I'm back! Sorry for the lack of posts again. I swear I am trying to be more consistent. My baby turned one a couple weeks ago. I like throwing big birthday parties for my girls. I feel like they're gypped by my illness. Most parents probably feel this way (good parents at least). I always want to do more for them. I don't want them to miss out on anything because of my illness. So, to make up for it I throw big birthday parties! I made a very cute butterfly cake and was surrounded by non-Paleo food and completely fell off the "Paleo Wagon". I was already teetering before the party. It was just the final straw.
My health has been up and down since (probably even before if I'm honest). I think the Paleo Diet helps my stomach issues but I don't have it all figured out yet. I was dealing with more fatigue and arm weakness. I fell off the wagon, ate some Gluten, had more energy, but the rest of my symptoms are back with a vengeance. My digestive system does not want to work at all, my heart is randomly racing constantly, and I have a TON of inflammation in my head. I know I need to go see an allergist, but honestly I need a little time to psych myself up for another appointment with a new Doctor. It's a little exhausting starting over with a new doctor, especially when you have conditions that are nearly unheard of.
Which brings me to my next topic... October is Dysautonomia Awareness Month! Spread the word Folks! Most sufferers of Dysautonomia fight for years before they are diagnosed. They go from doctor to doctor, receiving incorrect diagnoses, before they finally make their way to a specialist who puts the pieces together. Even then, it's an uphill fight. So, here's part of my story. I've had symptoms as long as I can remember so I won't bore you with the entire life story. I'll start in 2005, when I was in college and began searching for answers to my health problems.
Enter, my Knight in Shining Armour! My now-husband and I met in 2005 during our Freshman Year of College. I was going to a gym in a serious attempt to fight off the Freshman Fifteen, which may or may not have been brought on by too many nights of drinking beer and eating fast food. I somehow convinced this handsome guy to accompany me to the gym and he immediately knew something was not right (I was still convinced I was just out of shape). After lifting weights, we went to the track to run laps. He would run, I would struggle to jog. The grandma's were lapping me. He asked what was wrong and I shrugged and blew it off. He's a persistent guy though so it wasn't long before I was going to a doctor for a check-up. I wore a 24-hour Holter Monitor and the results were not good. I had crazy heart rates and was put on a Beta-Blocker (the first of many). I eventually was not happy with the lack of answers I was getting from my Primary Care Physician so I went to a Cardiologist. He informed me I should eat more. Ha! Trust me, that is not the answer! I just turned into a chubby, sick girl.
I then went to a Cardiologist, who didn't know what was wrong and then moved out of state. I then, self-referred myself to a third Cardiologist/Electrophysiologist in a neighboring state. I finally felt like I was in good hands. He performed a number of tests including a Stress Test, Echo, EKG, blood work, and we did a long-term, event monitor. It was a long time ago so excuse my lack of details on this one. I believe I wore it for about a month and I pushed a button when I felt symptomatic, which was pretty constant. I then was able to call a number, put the machine next to the phone, and it magically relayed my readings to the doctor. Technology is amazing! After trying every medication under the sun and finding no relief, it was decided I should have an Ablation on my Heart. I have a hard time even talking about this because it is the worst and scariest experience of my life. Wires were threaded through my groin and neck, into my heart. I immediately went into tachycardia, which sent the entire room into a frenzy. I was still awake at this point and completely strapped to a table so I couldn't move. After some medication slowed my heart rate, the mapping of my heart started. I'm not sure what was technically going on, but it literally felt like the doctor was stopping and starting my heart over and over again. It was miserable! I was relieved when the doctor announced the mapping portion was over and they would be putting me to sleep to do the ablation. They administered the anesthesia and told me to relax. The doctor then started the ablation and I had what felt like a seizure. My entire body was shaking out of control and I started yelling. Apparently, I have some issues with anesthesia because I was still awake. A nurse came and sat by my face to talk to me through the procedure and I made it through with a lot of praying. I remember them wheeling my bed into an elevator to go to recovery and then I fell asleep (after the surgery was over). Fantastic!
I was sore for a while, but went home the next day. And my heart raced non-stop for the next three months. The doctor was stumped. His suggestion, let's try the ablation again. My suggestion, why don't we go to Mayo Clinic. I won. One week at Mayo Clinic and I was diagnosed with Postural Orthostatic Tachycardia Syndrome and Neurocardiogenic Syncope (both are forms of Dysautonomia). That appointment was in January of 2008. After all of those appointments and a surgery on my heart (that was actually healthy), I finally had some answers. My heart wasn't the problem at all, my heart is simply responding to a bigger issue. I'm still struggling to determine what that bigger issue is. Honestly, I'll probably never know, but at least I know some ways to better handle my symptoms. I know not to let an uninformed doctor put a Pacemaker in my body (that is helpful to some POTS patients, but not my case). My heart is perfectly healthy.
Because of a lack of awareness, I was diagnosed with anxiety, basically anorexia although he wouldn't come out and say it, was giving countless medications that would not help, and had a surgery that nearly left me with a pacemaker. This was all at the hands of specialists! The medical world let me down. I needed help and was failed time and time again. There's no single person to blame. It's an obvious flaw in the system. How can people who specialize in heart conditions not be aware of an illness that directly affects the heart? It's mind boggling and extremely disappointing. And my story is nothing compared to some of the others I've heard. Dysautonomia needs more awareness! I can't say it enough! A healthy person does not wake up one day unable to stand because they have anxiety. That's ludicrous and it's insulting that a great many Dysautonomia patients are labeled with simply having anxiety when it just isn't the case.
I don't want others to go through this doctoring struggle. We already struggle every day! Doctors who are knowledgeable with POTS have compared our quality of life to that of a person suffering Heart Failure. We struggle just to make it through a simple day. We want to enjoy this one life we get to live, and instead we are forced to battle an uninformed medical world. I don't expect every doctor to know about every condition, but I do expect at least one out of three specialists to be able to correctly diagnose me. I absolutely expect that a specialist will not put my health and life at risk because they are uninformed. If I sound a little crabby about the situation, it's because I am. If I can save even one person from going through what I went through, I'll die happy. It's the entire reason I started this little blog. So, I'm attaching a couple links to some amazing websites. Please view them and share them. I will now crawl down off my soap box and continue on with my mundane life! :-)
Dysautonomia Information Network
Dysautonomia International
Tuesday, October 8, 2013
Wednesday, September 11, 2013
It's Invisible Illness Awareness Week!
So, I'm a little late in posting this as the week is already half over! As my two year old would say, "It's hump day!" She's a little obsessed with that camel commercial. If you haven't seen it, crawl out from under the rock you're living in and look it up on YouTube. It's pretty hilarious! Anyways, it's Invisible Illness Awareness Week and it's already half over! Only a few more precious days to celebrate being blessed with a chronic illness that nobody can see!
You might think I'm being sarcastic (maybe a little), but I'm actually quite serious. My chronic illness gives me an outlook on life that can't be found elsewhere. I have learned to appreciate the little moments in life and not take good days for granted. I live for the one day a week when I get to take my girls out grocery shopping. Woo Hoo! We're finally out of the house! I love watching my toddler ride in the cart, acting like the world is her stage. She literally sings and performs for the other shoppers the entire time we're in the store. And I just smile and laugh and soak it all in! Then, when we get home, I crash and it takes at least a day to recover. Our house falls to shambles, but it's all worth it for a few hours out of the house with my best friends.
The crazy thing about an invisible illness is that most people think you're fine. It's hard to recognize things we can't see. I don't help matters by being a Fakey! I've mastered the art of putting on the fake smile and pretending I feel fine. I just want to go to a gathering and not feel like death the entire time. So while I'm smiling, I'm actually thinking about how close the nearest chair is so I can sit before my blood pressure and heart rate go crazy. Or whether or not I remembered my medications because I need to take them a half hour before I eat. Or sitting close to an exit in case the room gets too warm. You get the idea. Then I get home and the real battle starts. The muscle weakness, aches, pains, tremors, tachycardia, stomach aches, FATIGUE, etc. So, I'm smiling because this is the hand I was dealt and I only get one shot at this life so I will enjoy it, but it doesn't mean it's not a struggle. Every second of every day, I'm reminded of this illness. I'm also reminded that everyone has struggles in their lives. Some far worse than mine and I count my blessings because I am so blessed!
So, this week is special to me because it reminds me of my struggles and blessings. It also brings awareness and hopefully understanding to these life-changing illnesses that are so poorly understood. I'm going to end this post with a survey that invisibleillnessweek.com is passing around. Maybe, it will bring even more understanding!
1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome. There's also an autoimmune issue going on but we have yet to figure that one out!
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: Very early childhood. I never remember a time when I could run a lap around a gym without blacking out.
4. The biggest adjustment I’ve had to make is: Recently switching to the Paleo Diet to work out my autoimmune issues. I feel lucky to have been born with this as I've never known any different. I can't imagine what it would be like to be perfectly healthy and then have it taken away.
5. Most people assume: I'm not sure. I'm very lucky to have supportive family and friends. If other people assume negative things about me, that's their problem. :-)
6. The hardest part about mornings are: Nothing! I usually feel really good in the mornings, even though I'm not a morning person!
7. My favorite medical TV show is: I avoid medical TV shows. I tend to self-diagnose. Haha!
8. A gadget I couldn’t live without is: My phone. Sad but true!
9. The hardest part about nights are: Right when I'm falling asleep. A lot of nights my heart is racing, my blood pressure is low, my body is aching, my stomach hurts, I have uncontrollable shaking, the room is spinning, my ears are ringing. Every night I think, "Just fall asleep and you'll feel like a new person in the morning." Sometimes easier said than done!
10. Each day I take __ pills & vitamins. 5 pills in the morning, 2 vials of liquid before each meal, and 2 vials at bedtime with 2 more pills.
11. Regarding alternative treatments I: Eat Paleo!
12. If I had to choose between an invisible illness or visible I would choose: Invisible! I love that I can pretend to be normal and don't get pre-judged.
13. Regarding working and career: I'm fortunate to be a stay-at-home mom. I hope to work again one day, but we'll see!
14. People would be surprised to know: I don't really have any surprises. I'm pretty Plain Jane!
15. The hardest thing to accept about my new reality has been: The fact that I was doing so much better throughout college and then I woke up from Gallbladder Surgery in the worst shape of my life. I'd do anything to go back in time and take better care of myself. I don't know if it would make a huge difference, but it couldn't hurt!
16. Something I never thought I could do with my illness that I did was: Have 2 beautiful babies!
17. The commercials about my illness: There aren't any. POTS is really unheard of, but in my opinion more common than people realize.
18. Something I really miss doing since I was diagnosed is: Eating a meal without worrying about how I'll feel a half hour later!
19. It was really hard to have to give up: Bread! I feel like all of my answers revolve around food, but I was already used to limiting myself physically because I grew up with the heart issues. The digestion stuff is all new to me!
20. A new hobby I have taken up since my diagnosis is: I love to crochet. I'm a Grandma at heart and I love making little hats for babies!
21. If I could have one day of feeling normal again I would: Spend it dancing with my babies and my husband!
22. My illness has taught me: To be compassionate. I don't know what other people deal with behind closed doors. Someone may seem like a complainer to me, but maybe they're really struggling with something I don't know about.
23. Want to know a secret? One thing people say that gets under my skin is: This generally comes from people who don't know me very well, but it's a little annoying when people assume you're healed because you're out in public. I have a chronic illness that I will deal with forever. It doesn't mean I will hole up in my house for the rest of my life. It also doesn't mean I'm making it up, just because I can spend a day out in public with a smile on my face!
24. But I love it when people: Are sincere. There are so many people who genuinely care about how I'm doing and that blows my mind sometimes!
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26
26. When someone is diagnosed I’d like to tell them: Keep the faith. You will adjust and things will get better. It won't be easy, but it does improve.
27. Something that has surprised me about living with an illness is: How it's much more difficult mentally than it is physically. Physical pain is easy, mental pain is a whole different ball game!
28. The nicest thing someone did for me when I wasn’t feeling well was: Pray for me! Those prayers helped and I was brought to tears every time someone called to tell me they had their church or bible study group pray for me! God listened!
29. I’m involved with Invisible Illness Week because: Awareness is powerful. People need to recognize and understand invisible illnesses.
30. The fact that you read this list makes me feel: In the words of my favorite reality tv star Phil Robertson from "Duck Dynasty": "Happy, Happy, Happy!"
You might think I'm being sarcastic (maybe a little), but I'm actually quite serious. My chronic illness gives me an outlook on life that can't be found elsewhere. I have learned to appreciate the little moments in life and not take good days for granted. I live for the one day a week when I get to take my girls out grocery shopping. Woo Hoo! We're finally out of the house! I love watching my toddler ride in the cart, acting like the world is her stage. She literally sings and performs for the other shoppers the entire time we're in the store. And I just smile and laugh and soak it all in! Then, when we get home, I crash and it takes at least a day to recover. Our house falls to shambles, but it's all worth it for a few hours out of the house with my best friends.
The crazy thing about an invisible illness is that most people think you're fine. It's hard to recognize things we can't see. I don't help matters by being a Fakey! I've mastered the art of putting on the fake smile and pretending I feel fine. I just want to go to a gathering and not feel like death the entire time. So while I'm smiling, I'm actually thinking about how close the nearest chair is so I can sit before my blood pressure and heart rate go crazy. Or whether or not I remembered my medications because I need to take them a half hour before I eat. Or sitting close to an exit in case the room gets too warm. You get the idea. Then I get home and the real battle starts. The muscle weakness, aches, pains, tremors, tachycardia, stomach aches, FATIGUE, etc. So, I'm smiling because this is the hand I was dealt and I only get one shot at this life so I will enjoy it, but it doesn't mean it's not a struggle. Every second of every day, I'm reminded of this illness. I'm also reminded that everyone has struggles in their lives. Some far worse than mine and I count my blessings because I am so blessed!
So, this week is special to me because it reminds me of my struggles and blessings. It also brings awareness and hopefully understanding to these life-changing illnesses that are so poorly understood. I'm going to end this post with a survey that invisibleillnessweek.com is passing around. Maybe, it will bring even more understanding!
1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome. There's also an autoimmune issue going on but we have yet to figure that one out!
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: Very early childhood. I never remember a time when I could run a lap around a gym without blacking out.
4. The biggest adjustment I’ve had to make is: Recently switching to the Paleo Diet to work out my autoimmune issues. I feel lucky to have been born with this as I've never known any different. I can't imagine what it would be like to be perfectly healthy and then have it taken away.
5. Most people assume: I'm not sure. I'm very lucky to have supportive family and friends. If other people assume negative things about me, that's their problem. :-)
6. The hardest part about mornings are: Nothing! I usually feel really good in the mornings, even though I'm not a morning person!
7. My favorite medical TV show is: I avoid medical TV shows. I tend to self-diagnose. Haha!
8. A gadget I couldn’t live without is: My phone. Sad but true!
9. The hardest part about nights are: Right when I'm falling asleep. A lot of nights my heart is racing, my blood pressure is low, my body is aching, my stomach hurts, I have uncontrollable shaking, the room is spinning, my ears are ringing. Every night I think, "Just fall asleep and you'll feel like a new person in the morning." Sometimes easier said than done!
10. Each day I take __ pills & vitamins. 5 pills in the morning, 2 vials of liquid before each meal, and 2 vials at bedtime with 2 more pills.
11. Regarding alternative treatments I: Eat Paleo!
12. If I had to choose between an invisible illness or visible I would choose: Invisible! I love that I can pretend to be normal and don't get pre-judged.
13. Regarding working and career: I'm fortunate to be a stay-at-home mom. I hope to work again one day, but we'll see!
14. People would be surprised to know: I don't really have any surprises. I'm pretty Plain Jane!
15. The hardest thing to accept about my new reality has been: The fact that I was doing so much better throughout college and then I woke up from Gallbladder Surgery in the worst shape of my life. I'd do anything to go back in time and take better care of myself. I don't know if it would make a huge difference, but it couldn't hurt!
16. Something I never thought I could do with my illness that I did was: Have 2 beautiful babies!
17. The commercials about my illness: There aren't any. POTS is really unheard of, but in my opinion more common than people realize.
18. Something I really miss doing since I was diagnosed is: Eating a meal without worrying about how I'll feel a half hour later!
19. It was really hard to have to give up: Bread! I feel like all of my answers revolve around food, but I was already used to limiting myself physically because I grew up with the heart issues. The digestion stuff is all new to me!
20. A new hobby I have taken up since my diagnosis is: I love to crochet. I'm a Grandma at heart and I love making little hats for babies!
21. If I could have one day of feeling normal again I would: Spend it dancing with my babies and my husband!
22. My illness has taught me: To be compassionate. I don't know what other people deal with behind closed doors. Someone may seem like a complainer to me, but maybe they're really struggling with something I don't know about.
23. Want to know a secret? One thing people say that gets under my skin is: This generally comes from people who don't know me very well, but it's a little annoying when people assume you're healed because you're out in public. I have a chronic illness that I will deal with forever. It doesn't mean I will hole up in my house for the rest of my life. It also doesn't mean I'm making it up, just because I can spend a day out in public with a smile on my face!
24. But I love it when people: Are sincere. There are so many people who genuinely care about how I'm doing and that blows my mind sometimes!
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26
26. When someone is diagnosed I’d like to tell them: Keep the faith. You will adjust and things will get better. It won't be easy, but it does improve.
27. Something that has surprised me about living with an illness is: How it's much more difficult mentally than it is physically. Physical pain is easy, mental pain is a whole different ball game!
28. The nicest thing someone did for me when I wasn’t feeling well was: Pray for me! Those prayers helped and I was brought to tears every time someone called to tell me they had their church or bible study group pray for me! God listened!
29. I’m involved with Invisible Illness Week because: Awareness is powerful. People need to recognize and understand invisible illnesses.
30. The fact that you read this list makes me feel: In the words of my favorite reality tv star Phil Robertson from "Duck Dynasty": "Happy, Happy, Happy!"
Tuesday, September 3, 2013
Hissy Fits and Meltdowns...
So last week I had a melt-down that would make a toddler's jaw drop. You would think I had dropped my lollipop in a sandbox or something. In reality, a nurse had called to tell me the seven vials of blood they had tested all came back normal. Only a chronically ill person could have a breakdown over good news.
I'm not even sure what tests they ran. Must be a sign that I'm officially tired of doctoring. I'm usually quite proactive. I do know they did the SED Rate test. It tests for inflammation and can indicate an autoimmune issue. The tears came because everyone (doctors included) knows I'm sick. It must be a part of human nature, but I have this insane need to have a name for what is happening to my poor body. I'm "sick" of being a medical mystery. That pun was totally intended! For once when someone asks what I have, I'd like to give a definite answer. I know I have POTS, but I also know there is something else going on. Something probably autoimmune related.
For now the search continues. My primary care doctor has prescribed a steroid that she would like me to try so I need to call my Doctor at Mayo and get his opinion on that. My primary doctor also referred me to a Rheumatologist but of course they can't see me until December so I wait!
OK, enough of that negativity! Let's talk about my improvements. I have been incredibly active lately. Just this weekend, I took my girls to a baby shower, parade, and barbecue. When I got home last night I had Gorilla arms (they were so weak and heavy it felt like my knuckles were dragging on the ground) and I had no energy but I'm living my life! Three cheers for that!
I also feel like the Paleo Diet has helped. It's going to be a slow process and I didn't think it was making a huge difference in how I was feeling. Then, I had a moment of baked goods weakness and ate a bun. A delicious, moist, piece of heaven that quickly turned to hell! A half hour later, I had a headache, my heart was racing, and I was nauseous. Lesson learned... again. I'm a really slow learner! One of these days I might catch on.
Another plus to the Paleo Diet is that I'm starting to love to cook! There is nothing more heart-warming than having my toddler say, "Mom, you're a good cooker!" My heart melted faster than Coconut Oil (my new favorite cooking ingredient) in a sizzling hot pan! It makes me happy to know that when my little girl moves out in sixteen years, she will actually miss her mom's cooking! That might be the only thing she misses of me, but at least it's something! Haha!
That's probably enough of my rambling for one day. I'll keep you updated on the steroids. Too bad they aren't the kind that will make me look like a supermodel. That would be a nice side effect!
"A man's heart deviseth his way: but the Lord directeth his steps." - Proverbs 16:9
Amy
Tuesday, August 13, 2013
It's About Time (My Recurring Theme)...
I know, it's been a while again. I just hate posting when I don't have good news. This "cocktail" has been a disappointment to me. In ways, I feel worse than I did before. Let me tell you, there is nothing more frustrating than fighting with your own body. It probably doesn't help that I'm hopelessly stuck in my old ways. You know how the saying goes, "Old dog, new tricks, blah, blah, blah." Well, just call me Fido because I'm a slow learner.
After my stint of not eating last winter, I swore that if I could get my stomach working again I would only eat healthy foods. Yeah, that lasted a good month before the devilish temptations of fried foods and baked treats started calling my name. It's not my fault, I'm American. It's how we're programmed. Eat what's easy and delicious now and worry about the consequences later. News flash: That's a terrible way to live! Trust me, the consequences really suck!
Now, I'm not an extremist. I, in no way think all of my health problems have been caused by my terrible eating habits. However, I haven't helped my cause by filling my body with processed, preserved, pre-made foods for the past twenty-seven years. I'd like to put partial blame on society but most of it falls back on me. Let's start with society, because I already feel rotten enough! I realize we live in a fast-paced world, but our health should remain a priority. When did this happen anyways? When did we get so caught up in life that we started gobbling down grease soaked burgers that taste like cardboard just to save a couple minutes during our lunch break? When did we have to start choosing between twenty versions of the same grocery item, all claiming to be "natural" when the ingredient list proves otherwise? I'd like to get back to the basics. I'm sure my Great-Grandparents are doing some fist pumps and happy dances up in Heaven, saying "It's about damn time!"
So now I have to point the finger back at myself. I have a chronic illness that controls more of my life than I like to admit and yet I haven't been able to buckle down and eat healthy. I was an insanely picky eater when I was young. I'm sure my poor, beef-raising parents never expected to have a child who wrinkled her nose at almost every form of meat. But now I'm 27 and I suppose it's time to grow up. Enter, the Paleo Diet (or at least my altered version of it). The concept is simple: Eat like a caveman. Fruits, veggies, meats, and all those other God-given foods that are filled with nutrients! What a concept! Eating to live instead of the other way around!
This is going to be a battle for me. For POTS patients, standing and being in heat are two HUGE symptom inducing factors. So naturally, cooking is not something I've been a big fan of. But, I'm learning. Instead of cooking the meal all at once, I break it up throughout the day. For instance, sitting at the table and chopping veggies while my girls are napping so when it's time to cook supper I just toss them in. I also have to admit that I'm not going to be a good role model for Paleo Wannabe's. I live on a farm where our main crop is wheat. I'm pretty sure if I told my husband we could no longer have wheat products in our house, he would have a heart attack and I love him so I don't want that. I, however, am avoiding gluten because I've always known it's a problem food for me (though I don't have Celiac Disease) and I've just never had the self-discipline to do anything about it. I'm thinking I've finally hit my rock bottom! I know, it's about damn time!
Ok, this post got a little lengthy, but I'm making some big changes and finally, FINALLY taking control of the few things in my life that I can. Naturally, I wanted to share my epiphanies! As a side note, I am still taking the cocktail of meds and will be seeing my primary care doctor soon to discuss where to go from here. Dr. G. suggested seeing an Allergist/Immunologist and I think that's a terrific idea. I've been having some issues with my tongue being constantly swollen and it's probably time to finally have some real allergy testing done. I'll keep you posted. Oh and speaking of wheat, I'm attaching a photo I took of the sunset by one of our fields last night. My personal paradise!
"The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower." - Psalms 18:2
Amy
Thursday, July 11, 2013
Well Hello Again...
It's been awhile! I think I've taken the stance of "If you don't have anything nice to say, don't say anything at all." I've definitely not had the miraculous recovery I was hoping for and my improvements have been small and slow. Logically, I knew this was to be expected but it's disappointing nonetheless.
I'll start with the positives. My energy level has improved. I would guess this has to do with the B12 supplement. I'm still taking an oral supplement and I think within the next month or so we'll be re-checking my levels to see if there's been an improvement. As I mentioned in an earlier post, my nausea has also improved. It's no longer 24/7 which is amazing! My "extreme episodes" which usually happen at night are also becoming more rare. Some nights I feel like I'm right on the verge of one of these episodes, but the Allegra/Zantac combination seems to put an end to it. I can feel it the moment those meds kick in and my body instantly relaxes, allowing me to pass out and sleep through the night! Hooray for that!
Logically, I know I've come leaps and bounds since last December. I've had a very active summer so far. Most active days cause me to feel a little like road kill the next day, but it's so worth it for the memories made. In December, I was so ill that being active wasn't an option. I wasn't able to shop for my girl's Christmas gifts and when they opened them, I watched from the couch. It was the worst form of torture ever, right behind waterboarding!
So, overall I'm doing much better but I'm still dealing with a ton of daily symptoms that are making me miserable! My everyday symptoms are congestion, ear ringing, tachycardia, shortness of breath, red irritated eyes, sore dry throat, painful joints, burning in my mouth and tongue, burning in my stomach, and palpitations. I've also been having days with extreme weakness and tremors in my arms. It's a lot like having the flu for the past seven months.
After discussing these symptoms with Dr. Goodman, he decided to add a small dose of Zyrtec to my cocktail. Hopefully that will take care of some of these symptoms. For now I'll say positive and push on and I promise to post again soon!
"But the Lord is my defence; and my God is the rock of my refuge." -Psalms 94:22
Amy
Saturday, June 15, 2013
A Terrible Night...
Ugh! One step forward, two steps back. And so the dance that is my life continues. Yesterday was not a great day. I woke up with very weak, stiff hands so I could tell my body was upset about something. I sure wish we could figure out what exactly caused my entire system to get its panties in a bunch. I'd be more than happy to do whatever I can to fix it!
I powered through the day and did alright. I had moments where I felt pretty good and moments where I felt like crud! Then I went to bed... My body entered attack mode. I think I've mentioned this before but it seems that all of my really bad episodes happen as I'm trying to fall asleep at night. I don't understand that.
I'm starting to recognize the signs of these episodes and had an idea my night was not going to go well. My arms were very weak and my stomach was burning/hurting and gurgling. I ate a lot of carbs yesterday so I'm sure I brought this on myself. Bread is like a drug to me. I know it's bad, but it's so soooo good!
So, as I'm lying down my heart decides to be crazy. I wasn't having tachycardia but I was having palpitations. It was doing some crazy flip-flops and each beat felt like my heart was going to come out of my chest (even though it wasn't racing). I didn't take my blood pressure because sometimes those numbers can just make me panic but I would guess my pulse pressure was really low. Pulse pressure is the difference between the top number and bottom number on your blood pressure by the way. I was also having some breathing problems. It feels like I have to concentrate to breath. Then, just as I start to drift to sleep my body forgets to breath and I end up jerking awake and gasping for air for a good thirty seconds. Then, the legs started feeling crazy. The muscles got very uncomfortable and they went tense and would not relax. The episode ended with waves of tingles and goosebumps over my entire body and a lot of stomach gurgling. Then, I finally drifted off to sleep! I can't tell you how many times I've chanted "Just go to sleep, you'll be fine in the morning" to myself.
Just for the record, I don't do any form of illegal drugs and this was not a panic attack. Haha! So many of us Potsies (myself included) are misdiagnosed as having anxiety. The biggest relief of my life was my first trip to Mayo when Dr. Fealey looked at me and said, "This is not anxiety. It's not in your head and it's nothing you can control. These are very real reactions caused by dysautonomia." I, of course, broke down in tears because I'm a lady and that's what we do!
Happily, today is a new day! I'm going to avoid carbs and enjoy the beautiful day I have been blessed with. Those episodes are scary and I hate not having control of my body, but they also put everything back into perspective. It was a privilege to wake up this morning (a lot of people didn't) and I will make the most of this day.
"For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God." Ephesians 2:8
Amy
I powered through the day and did alright. I had moments where I felt pretty good and moments where I felt like crud! Then I went to bed... My body entered attack mode. I think I've mentioned this before but it seems that all of my really bad episodes happen as I'm trying to fall asleep at night. I don't understand that.
I'm starting to recognize the signs of these episodes and had an idea my night was not going to go well. My arms were very weak and my stomach was burning/hurting and gurgling. I ate a lot of carbs yesterday so I'm sure I brought this on myself. Bread is like a drug to me. I know it's bad, but it's so soooo good!
So, as I'm lying down my heart decides to be crazy. I wasn't having tachycardia but I was having palpitations. It was doing some crazy flip-flops and each beat felt like my heart was going to come out of my chest (even though it wasn't racing). I didn't take my blood pressure because sometimes those numbers can just make me panic but I would guess my pulse pressure was really low. Pulse pressure is the difference between the top number and bottom number on your blood pressure by the way. I was also having some breathing problems. It feels like I have to concentrate to breath. Then, just as I start to drift to sleep my body forgets to breath and I end up jerking awake and gasping for air for a good thirty seconds. Then, the legs started feeling crazy. The muscles got very uncomfortable and they went tense and would not relax. The episode ended with waves of tingles and goosebumps over my entire body and a lot of stomach gurgling. Then, I finally drifted off to sleep! I can't tell you how many times I've chanted "Just go to sleep, you'll be fine in the morning" to myself.
Just for the record, I don't do any form of illegal drugs and this was not a panic attack. Haha! So many of us Potsies (myself included) are misdiagnosed as having anxiety. The biggest relief of my life was my first trip to Mayo when Dr. Fealey looked at me and said, "This is not anxiety. It's not in your head and it's nothing you can control. These are very real reactions caused by dysautonomia." I, of course, broke down in tears because I'm a lady and that's what we do!
Happily, today is a new day! I'm going to avoid carbs and enjoy the beautiful day I have been blessed with. Those episodes are scary and I hate not having control of my body, but they also put everything back into perspective. It was a privilege to wake up this morning (a lot of people didn't) and I will make the most of this day.
"For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God." Ephesians 2:8
Amy
Monday, June 10, 2013
Finding Positives During a Zombie Apocalypse...
Yup, that's how my mind is working today! I don't even believe in the zombie theory, but last night I felt like I was the victim of an apocalypse. A gory, brutal apocalypse.
We had an amazing, long weekend getaway with my hubby's family (see picture below). It was a true reminder of how far I've come since December. I was able to participate (and eat) the entire weekend and even had a few milestone moments. The best moment would have to be my first sip of alcohol in well over a year. I'm not a heavy drinker but I enjoy sitting on the deck with a beer in the summer so I was ecstatic to drink half of a Bud Light Lime! Oh, the simple things in life!
It all caught up to me when we got home yesterday afternoon. Enter, zombie apocalypse and not being able to get off the couch! Of course, my mood followed and I was a grumpy mess until I gave myself a proverbial kick in the pants. Pity party over! I just had an amazing, active weekend and in December I could barely get off the couch. It's frustrating to have a simple family weekend completely wipe me out, but it's not even comparable to how I felt just a few months ago. The best part is that after a good nights sleep, I felt much less like a victim of a zombie apocalypse and much more like a survivor! I've even been able to do some laundry and unpacking today.
As far as the MCAD cocktail, when changes are slow and subtle it's hard to notice them. I feel like my nausea is improving from 24/7 to maybe 5/3! That's pretty incredible! In all honesty, it has not been the miracle regimen I hoped it would be. I'm still dealing with some menacing symptoms, but I'm functioning so much better! I pray that I will someday be back to where I was pre-gallbladder removal but am so happy to be where I am today. If this has to be my new normal, I can live with that.
"The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance." 2 Peter 3:9
Amy
We had an amazing, long weekend getaway with my hubby's family (see picture below). It was a true reminder of how far I've come since December. I was able to participate (and eat) the entire weekend and even had a few milestone moments. The best moment would have to be my first sip of alcohol in well over a year. I'm not a heavy drinker but I enjoy sitting on the deck with a beer in the summer so I was ecstatic to drink half of a Bud Light Lime! Oh, the simple things in life!
It all caught up to me when we got home yesterday afternoon. Enter, zombie apocalypse and not being able to get off the couch! Of course, my mood followed and I was a grumpy mess until I gave myself a proverbial kick in the pants. Pity party over! I just had an amazing, active weekend and in December I could barely get off the couch. It's frustrating to have a simple family weekend completely wipe me out, but it's not even comparable to how I felt just a few months ago. The best part is that after a good nights sleep, I felt much less like a victim of a zombie apocalypse and much more like a survivor! I've even been able to do some laundry and unpacking today.
As far as the MCAD cocktail, when changes are slow and subtle it's hard to notice them. I feel like my nausea is improving from 24/7 to maybe 5/3! That's pretty incredible! In all honesty, it has not been the miracle regimen I hoped it would be. I'm still dealing with some menacing symptoms, but I'm functioning so much better! I pray that I will someday be back to where I was pre-gallbladder removal but am so happy to be where I am today. If this has to be my new normal, I can live with that.
"The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance." 2 Peter 3:9
Amy
Friday, May 31, 2013
Cocktail Update...
Wow. It's been a while! I wish I could say it's because I've been miraculously healed and too busy living life to blog. I would love to be climbing Mount Kilimanjaro, running a marathon, or bench pressing a small automobile! More realistically, I'd be ecstatic to carry my toddler up a flight of stairs, jog a half-mile, open a jar of baby food without struggling for five minutes, paint my kitchen ceiling, or mow my lawn. Baby steps.
So, the MCAD cocktail is slow-going. Slow as in watching a snail and a turtle race. I'm trying so hard to be patient and give it time. I know it's a gradual process but it's hard to take things a day at a time when you don't feel well. I think it's similar to having a job. It would be much more fun to go right to the promotions and pay raises and skip over all of that hard work nonsense!
The first few days on the Cocktail, I started with half-doses. Dr. Goodman didn't necessarily recommend I do this but I always get nervous with new meds. I had some pretty not fun reactions those first days. I'm now up to full doses (using name brand Allegra and Pepcid as I reacted to the generics). I'm no longer having the bad episodes but I feel pretty crummy overall. My stomach problems are worse than they've been for a while, my arms are extremely weak, and I'm having a lot of lightheadedness.
I'm going to call Dr. Goodman next week and check in with him. That will mark the two week point with the new meds. I'm interested to see what he says. I'm hoping my body is just slow to adjust and that things will get better. I expected these meds would either help or not, I wasn't expecting to actually feel worse. It's been a little discouraging and sometimes I feel like I'm digging my way out of quick sand, but I'm nowhere near finished with this battle. If these meds aren't my answer, then we'll try something else. There may come a day when I have to accept this as my new normal, but I'm stubborn and not ready for that yet.
"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1
Amy
So, the MCAD cocktail is slow-going. Slow as in watching a snail and a turtle race. I'm trying so hard to be patient and give it time. I know it's a gradual process but it's hard to take things a day at a time when you don't feel well. I think it's similar to having a job. It would be much more fun to go right to the promotions and pay raises and skip over all of that hard work nonsense!
The first few days on the Cocktail, I started with half-doses. Dr. Goodman didn't necessarily recommend I do this but I always get nervous with new meds. I had some pretty not fun reactions those first days. I'm now up to full doses (using name brand Allegra and Pepcid as I reacted to the generics). I'm no longer having the bad episodes but I feel pretty crummy overall. My stomach problems are worse than they've been for a while, my arms are extremely weak, and I'm having a lot of lightheadedness.
I'm going to call Dr. Goodman next week and check in with him. That will mark the two week point with the new meds. I'm interested to see what he says. I'm hoping my body is just slow to adjust and that things will get better. I expected these meds would either help or not, I wasn't expecting to actually feel worse. It's been a little discouraging and sometimes I feel like I'm digging my way out of quick sand, but I'm nowhere near finished with this battle. If these meds aren't my answer, then we'll try something else. There may come a day when I have to accept this as my new normal, but I'm stubborn and not ready for that yet.
"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1
Amy
Wednesday, May 22, 2013
My Not-So-Romantic Novel...
Every now and then I read a juicy Romantic Novel. I like that they don't require brain cells to comprehend. It's also nice to lose yourself in a completely unrealistic situation and forget about real life problems. Romantic novels and reality tv. Those two things give me a silly escape from the everyday stresses of living with a chronic illness. The only problem with Romantic Novels is that they aren't realistic... at all! For once, I would like to read a Romantic Novel filled with realistic situations. Awkward, uncomfortable situations. So, I'm writing one. Please enjoy this teaser to my Not-So-Romantic Novel.
Jane was pushing her squeaky cart down the busy aisles of the local Wal-Mart. Lost deep in thought about which spaghetti sauce she should buy, Jane recklessly pushed her cart forward. Just as she was about to turn the corner to the next aisle, she smashed into an oncoming cart filled with Chef Boyardi, Ramen Noodles, and the cheap toilet paper that scratches in all the wrong places. Slowly, Jane lifted her eyes to see the poor, broke owner of this cart. As soon as their eyes met, it was love. He was adorable with his pasty white skin, dark greasy hair, and chicken legs peaking out from under green plaid shorts. His tattered Star Wars t-shirt and white tube socks with sandals completed the intriguing ensemble. She couldn't wait to introduce herself and shake his clammy, sticky hand.
Yup, that's much more realistic! Haha! No, I'm not really writing a book. I just needed a little giggle today! Stay tuned to find out what happens with Jane and her mysterious, nerdy man friend! :-)
Jane was pushing her squeaky cart down the busy aisles of the local Wal-Mart. Lost deep in thought about which spaghetti sauce she should buy, Jane recklessly pushed her cart forward. Just as she was about to turn the corner to the next aisle, she smashed into an oncoming cart filled with Chef Boyardi, Ramen Noodles, and the cheap toilet paper that scratches in all the wrong places. Slowly, Jane lifted her eyes to see the poor, broke owner of this cart. As soon as their eyes met, it was love. He was adorable with his pasty white skin, dark greasy hair, and chicken legs peaking out from under green plaid shorts. His tattered Star Wars t-shirt and white tube socks with sandals completed the intriguing ensemble. She couldn't wait to introduce herself and shake his clammy, sticky hand.
Yup, that's much more realistic! Haha! No, I'm not really writing a book. I just needed a little giggle today! Stay tuned to find out what happens with Jane and her mysterious, nerdy man friend! :-)
Tuesday, May 21, 2013
First Day on the Cocktail
I started the cocktail of Cromolyn, Pepcid, and Allegra yesterday. It can take two to six weeks to start noticing improvements so I'm not surprised that I haven't noticed anything yet. I did have issues with the Allegra and Pepcid yesterday.
I took the Allegra in the morning and shortly after had a little episode. A wave of nausea, tingles all over, tachycardia, goosebumps, muscle weakness, etc. Then, I took the Pepcid at night and had issues with that as well. I kept having adrenaline surges as I was trying to fall asleep. Everyone has those moments right as you drift off to sleep when it feels like you're falling and you jerk awake. These adrenaline surges are similar to that but include tachycardia, gasping for breath, and sweating. Then I had another episode that was a mild form of the same episodes I dealt with after surgery.
It's common for people with Mast Cell issues to have sensitivities to medications. The pharmacy gave me the generic forms of the Allegra and Pepcid and I'm thinking that's what the issue was. A lot of MCAD patients react to the additives used in generic forms of medications. So, my hubby is going to get the name brand forms of those drugs and I'm hoping that makes all the difference!
On a side note, I had a great weekend! The girls and I went to my hometown for my cousin's graduation and it was great to see everyone! I've always felt so blessed to have grown up in a small town! At the graduation, I was bombarded by caring people. I received hugs and pats on the arm. I was asked sincere questions about how I'm feeling and what I've been going through. I was given many well wishes and reminded of all the prayers I'm still receiving. Unbelievable! That little community is so supportive and it was wonderful to be back! Thank you all so much!
"Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind." 1 Peter 3:8
Amy
I took the Allegra in the morning and shortly after had a little episode. A wave of nausea, tingles all over, tachycardia, goosebumps, muscle weakness, etc. Then, I took the Pepcid at night and had issues with that as well. I kept having adrenaline surges as I was trying to fall asleep. Everyone has those moments right as you drift off to sleep when it feels like you're falling and you jerk awake. These adrenaline surges are similar to that but include tachycardia, gasping for breath, and sweating. Then I had another episode that was a mild form of the same episodes I dealt with after surgery.
It's common for people with Mast Cell issues to have sensitivities to medications. The pharmacy gave me the generic forms of the Allegra and Pepcid and I'm thinking that's what the issue was. A lot of MCAD patients react to the additives used in generic forms of medications. So, my hubby is going to get the name brand forms of those drugs and I'm hoping that makes all the difference!
On a side note, I had a great weekend! The girls and I went to my hometown for my cousin's graduation and it was great to see everyone! I've always felt so blessed to have grown up in a small town! At the graduation, I was bombarded by caring people. I received hugs and pats on the arm. I was asked sincere questions about how I'm feeling and what I've been going through. I was given many well wishes and reminded of all the prayers I'm still receiving. Unbelievable! That little community is so supportive and it was wonderful to be back! Thank you all so much!
"Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind." 1 Peter 3:8
Amy
Tuesday, May 14, 2013
A New Cocktail...
Well, I'm starting a new cocktail. Not exactly the kind of cocktail I'm really craving, but hopefully it'll do the trick regardless. It's the Mast Cell Activation Disorder cocktail. That's a mouthful! Why can't these conditions have nice short names. Now, when a doctor asks if I have any known conditions I have to rattle off Postural Orthostatic Tachycardia Syndrome and (if these meds work) Mast Cell Activation Disorder. That mouthful will be shortly followed by a dumbfounded expression from the hypothetical Doc as most have never heard of either condition.
The cocktail consists of Cromolyn, Pepcid, and Allegra. The Cromolyn is a liquid that I will mix with water and take four times a day (30 minutes before each meal and at bedtime). It is used to prevent the mast cells from degranulating which is a fancy word for spilling their nasty toxins into my system. The Pepcid and Allegra are just your regular old H1 and H2 blockers. They block the histamine that the mast cells release as the Cromolyn won't be able to completely stabilize things.
I'm praying this will help as these past few weeks have been miserable. The shortness of breath has still been better and I'm thanking God for that! I didn't even realize how much of an issue it was until it was gone. Amazing and so thankful for that! The rest of my symptoms are being more stubborn. The nausea, brick in gut feeling, muscle weakness, tinnitus, puffy eyes, tachycardia, extremely dry throat and skin, etc. has all been terrible since I've been back from Arizona. I think it's probably a combination of seasonal allergies along with all the other things I have going on. Whatever it is, it's miserable.
For Mother's Day we took our kiddos to the zoo. Our toddler LOVED it! She didn't want to leave the Prairie Dogs which makes sense since her best friend is her stuffed Prairie Dog named Baby Jack. He's the ugliest stuffed animal I've ever seen, but she adores him! We were only there for a couple of hours but I felt as if I had walked for days! I had a migraine, my heart rate was through the roof, extreme muscle and joint pain, terrible nausea, and lots of pressure in my head and ears. It gets frustrating! Shouldn't a mom in her 20's be able to take her girls to the zoo without feeling like she's been hit by a truck? I'm sure it will take me a week (or more) to recover from that little outing. It was completely worth it for the memories made and time spent with my little family, but frustrating nonetheless. One of these days I may need to swallow my pride and use the train tours or (gasp) use a motorized scooter, but that's a topic that deserves a post all it's own. When you appear healthy on the outside, it's hard for people to understand you might actually be disabled! I'm afraid if I cave to the scooter concept I would ride around with a middle finger in the air in response to the dirty looks ignorant bystanders might give me. I should mention that I'm normally fine walking. I only struggle when it's excessive (such as at a zoo or shopping). Considering this new cocktail is going to work, I won't need to worry about a scooter! The power of positive thinking! :-)
"And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28
Amy
The cocktail consists of Cromolyn, Pepcid, and Allegra. The Cromolyn is a liquid that I will mix with water and take four times a day (30 minutes before each meal and at bedtime). It is used to prevent the mast cells from degranulating which is a fancy word for spilling their nasty toxins into my system. The Pepcid and Allegra are just your regular old H1 and H2 blockers. They block the histamine that the mast cells release as the Cromolyn won't be able to completely stabilize things.
I'm praying this will help as these past few weeks have been miserable. The shortness of breath has still been better and I'm thanking God for that! I didn't even realize how much of an issue it was until it was gone. Amazing and so thankful for that! The rest of my symptoms are being more stubborn. The nausea, brick in gut feeling, muscle weakness, tinnitus, puffy eyes, tachycardia, extremely dry throat and skin, etc. has all been terrible since I've been back from Arizona. I think it's probably a combination of seasonal allergies along with all the other things I have going on. Whatever it is, it's miserable.
For Mother's Day we took our kiddos to the zoo. Our toddler LOVED it! She didn't want to leave the Prairie Dogs which makes sense since her best friend is her stuffed Prairie Dog named Baby Jack. He's the ugliest stuffed animal I've ever seen, but she adores him! We were only there for a couple of hours but I felt as if I had walked for days! I had a migraine, my heart rate was through the roof, extreme muscle and joint pain, terrible nausea, and lots of pressure in my head and ears. It gets frustrating! Shouldn't a mom in her 20's be able to take her girls to the zoo without feeling like she's been hit by a truck? I'm sure it will take me a week (or more) to recover from that little outing. It was completely worth it for the memories made and time spent with my little family, but frustrating nonetheless. One of these days I may need to swallow my pride and use the train tours or (gasp) use a motorized scooter, but that's a topic that deserves a post all it's own. When you appear healthy on the outside, it's hard for people to understand you might actually be disabled! I'm afraid if I cave to the scooter concept I would ride around with a middle finger in the air in response to the dirty looks ignorant bystanders might give me. I should mention that I'm normally fine walking. I only struggle when it's excessive (such as at a zoo or shopping). Considering this new cocktail is going to work, I won't need to worry about a scooter! The power of positive thinking! :-)
"And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28
Amy
Thursday, May 9, 2013
Too Good to be True?
I'm almost afraid to write this post. I've got some good news and I'm afraid I'll jinx it if I write about it too soon! I'm praying its not just a fluke, but a sign of some real progress!
To make a short story long, I live in a two story farmhouse. My hubby and I sleep on the main floor and our girls sleep upstairs. Not ideal for many reasons. The main issue is that I've always had a terrible time with stairs. About half-way up, my heart begins to race, my lungs and legs burn, I start gasping for air, and then things go black. This leaves me with a couple of options: either sit down until my body stops hating me or go as fast as I can and hope I make it to the top without passing out. I feel the need to explain that this is more than an "out of shape" issue. I've always had this problem and just chalked it up to being a POTSie. Needless to say, I usually avoid the stairs.
Normally, the hubby is responsible for carrying the girls upstairs and tucking them into bed and getting them up in the morning. It's actually one of the hidden blessings of this illness. I'm home with the girls all day, so I love that they get this special time with their dad to start and end each day. Anyways, things have been hectic for him this week so the duty has been left to me. Last night, our two year old fell asleep on the couch before I could get her to bed. I knew the little zombie wasn't going to wake up and walk up the stairs to her room so I only had one option. I picked her up (along with her nightly essentials of her snuggle blanket, stuffed ladybug, and stuffed prairie dog named Baby Jack (don't ask!)), said a prayer, and started up the stairs. I got to the top and felt terrible. Something was wrong and I felt really off. It felt as if my body was forgetting to do something really important. I stopped at the top of the stairs and realized nothing was wrong, something was actually right! I wasn't gasping for air and it felt terribly unnatural! My heart was still racing, but my legs and lungs didn't burn and my breathing was normal. This is literally the first time this has happened in my entire life.
When I went to get her up this morning, still no gasping! You know you've been sick too long when you panic from feeling normal! Haha! I'm positive this has to do with the B12. One of the main symptoms of a B12 deficiency is shortness of breath. B12 plays a role in making mature, healthy red blood cells. Red blood cells carry oxygen throughout the body. No wonder I've always felt starved for oxygen. I'm not pretending B12 has been my miracle pill. In many ways, I've felt much worse the past couple of weeks (nausea, tinnitus, burning eyes), but this is a major development for me. This is a terrible symptom I've dealt with my entire life which may have just been a simple B12 deficiency issue. Oh, how I wish we would have caught this sooner!
On a side note, I'm working on a B12 post. I'm reading a book and some published studies first. B12 deficiency is a real, serious issue. It's not a fad diagnosis. My blood work showed evidence of a serious B12 problem all the way back in 2007 (enlarged red blood cells and anemia) and no doctors caught it. I'll get more into that with the B12 post, but it's frustrating nonetheless. For now, I'm going to be ecstatic about this new development. I'm letting my mind go crazy with thoughts of being able to jog in the near future! Dear God, please don't let this be a fluke! :-)
"The Lord upholds all who fall, And raises up all who are bowed down." Psalm 145:14
Amy
To make a short story long, I live in a two story farmhouse. My hubby and I sleep on the main floor and our girls sleep upstairs. Not ideal for many reasons. The main issue is that I've always had a terrible time with stairs. About half-way up, my heart begins to race, my lungs and legs burn, I start gasping for air, and then things go black. This leaves me with a couple of options: either sit down until my body stops hating me or go as fast as I can and hope I make it to the top without passing out. I feel the need to explain that this is more than an "out of shape" issue. I've always had this problem and just chalked it up to being a POTSie. Needless to say, I usually avoid the stairs.
Normally, the hubby is responsible for carrying the girls upstairs and tucking them into bed and getting them up in the morning. It's actually one of the hidden blessings of this illness. I'm home with the girls all day, so I love that they get this special time with their dad to start and end each day. Anyways, things have been hectic for him this week so the duty has been left to me. Last night, our two year old fell asleep on the couch before I could get her to bed. I knew the little zombie wasn't going to wake up and walk up the stairs to her room so I only had one option. I picked her up (along with her nightly essentials of her snuggle blanket, stuffed ladybug, and stuffed prairie dog named Baby Jack (don't ask!)), said a prayer, and started up the stairs. I got to the top and felt terrible. Something was wrong and I felt really off. It felt as if my body was forgetting to do something really important. I stopped at the top of the stairs and realized nothing was wrong, something was actually right! I wasn't gasping for air and it felt terribly unnatural! My heart was still racing, but my legs and lungs didn't burn and my breathing was normal. This is literally the first time this has happened in my entire life.
When I went to get her up this morning, still no gasping! You know you've been sick too long when you panic from feeling normal! Haha! I'm positive this has to do with the B12. One of the main symptoms of a B12 deficiency is shortness of breath. B12 plays a role in making mature, healthy red blood cells. Red blood cells carry oxygen throughout the body. No wonder I've always felt starved for oxygen. I'm not pretending B12 has been my miracle pill. In many ways, I've felt much worse the past couple of weeks (nausea, tinnitus, burning eyes), but this is a major development for me. This is a terrible symptom I've dealt with my entire life which may have just been a simple B12 deficiency issue. Oh, how I wish we would have caught this sooner!
On a side note, I'm working on a B12 post. I'm reading a book and some published studies first. B12 deficiency is a real, serious issue. It's not a fad diagnosis. My blood work showed evidence of a serious B12 problem all the way back in 2007 (enlarged red blood cells and anemia) and no doctors caught it. I'll get more into that with the B12 post, but it's frustrating nonetheless. For now, I'm going to be ecstatic about this new development. I'm letting my mind go crazy with thoughts of being able to jog in the near future! Dear God, please don't let this be a fluke! :-)
"The Lord upholds all who fall, And raises up all who are bowed down." Psalm 145:14
Amy
Monday, May 6, 2013
Three Cheers for Research!!!
Looking back at my posts lately, I realize they have been pretty whiny. Lots of complaining, when I have so much to be thankful for! For instance, I'm thankful God created mice. I despise mice! I'm famous for standing on the coffee table, screaming bloody murder if I see one. But these disgusting little creatures just might be a key component in making my life more livable! So, little mice, as long as you don't make my home your new home, please continue to multiply! But remember, mi casa es NOT su casa.
The month of April proved to be very exciting as far as POTS research! I have a brain that runs circles, but the mouse reference above did actually have a point. A group at Vanderbilt University School of Medicine in Nashville recently found a way to replicate POTS in mice. It involves a mutation in a norepinephrine transporter. This group previously found that POTS patients have this mutation, causing us to have some serious issues with adrenaline. I'm not a doctor and I didn't go to medical school so I'm not going to pretend to completely understand all of this. When I read these research studies, it's a long process that involves a lot of re-reading and Googling. Anyways, this is an exciting development in POTSie land. When studying actual humans, researchers are pretty limited in what they can do. While I feel a tiny little bit sorry for the hideous mice, they are opening a lot of doors in POTS research. Besides, I participated in a study at Mayo Clinic so I feel like I've paid my dues! ;-) Here's the link to that study by the way http://www.ncbi.nlm.nih.gov/pubmed/23580201.
This next bit of research came from some Doctors who I saw when I was first diagnosed at Mayo Clinic in Rochester. They found some new autoantibodies in some POTS patients. My very basic understanding is that anyone with an autoimmune disease has autoantibodies that attack certain parts of their body. For instance, people with Hashimoto's Disease have autoantibodies that attack the thyroid. The autoantibodies in this study attack a group of proteins responsible for many different functions in the body. They help regulate adrenaline signaling, calcium signaling, and energy metabolism, among other things. This makes perfect sense! It even explains why I might have a B12 deficiency. If my body is attacking proteins associated with energy metabolism, it seems that my body would use more B12 which is used for energy metabolism. Ding Ding Ding! We have a winner! :-) Again, I'm not a doctor so this is just my busy mind making speculations. Here is the link to that study http://www.ncbi.nlm.nih.gov/pubmed/23562385.
Those were the two main studies that caught my eye last month. There are others and I urge you to visit pubmed.org if you're interested in reading more. Pubmed is a wonderful resource. You can search any medical condition known to man and read research studies pertaining to them. Again, I'm sure I don't always decipher these studies accurately, but I like to try to stay up-to-date and informed on my condition. Plus, reading these studies gives me hope that good things are on the way! It amazes me how much they learn every year! Dr. Goodman told me that he thinks there is an autoimmune component to this illness and I feel like they are right on the crest of figuring it out. Exciting things on the horizon! Maybe when I get some extra energy and time, I'll go to medical school so I can solve this mystery myself! :-)
"An intelligent heart acquires knowledge, and the ear of the wise seeks knowledge." Proverbs 18:15
Amy
The month of April proved to be very exciting as far as POTS research! I have a brain that runs circles, but the mouse reference above did actually have a point. A group at Vanderbilt University School of Medicine in Nashville recently found a way to replicate POTS in mice. It involves a mutation in a norepinephrine transporter. This group previously found that POTS patients have this mutation, causing us to have some serious issues with adrenaline. I'm not a doctor and I didn't go to medical school so I'm not going to pretend to completely understand all of this. When I read these research studies, it's a long process that involves a lot of re-reading and Googling. Anyways, this is an exciting development in POTSie land. When studying actual humans, researchers are pretty limited in what they can do. While I feel a tiny little bit sorry for the hideous mice, they are opening a lot of doors in POTS research. Besides, I participated in a study at Mayo Clinic so I feel like I've paid my dues! ;-) Here's the link to that study by the way http://www.ncbi.nlm.nih.gov/pubmed/23580201.
This next bit of research came from some Doctors who I saw when I was first diagnosed at Mayo Clinic in Rochester. They found some new autoantibodies in some POTS patients. My very basic understanding is that anyone with an autoimmune disease has autoantibodies that attack certain parts of their body. For instance, people with Hashimoto's Disease have autoantibodies that attack the thyroid. The autoantibodies in this study attack a group of proteins responsible for many different functions in the body. They help regulate adrenaline signaling, calcium signaling, and energy metabolism, among other things. This makes perfect sense! It even explains why I might have a B12 deficiency. If my body is attacking proteins associated with energy metabolism, it seems that my body would use more B12 which is used for energy metabolism. Ding Ding Ding! We have a winner! :-) Again, I'm not a doctor so this is just my busy mind making speculations. Here is the link to that study http://www.ncbi.nlm.nih.gov/pubmed/23562385.
Those were the two main studies that caught my eye last month. There are others and I urge you to visit pubmed.org if you're interested in reading more. Pubmed is a wonderful resource. You can search any medical condition known to man and read research studies pertaining to them. Again, I'm sure I don't always decipher these studies accurately, but I like to try to stay up-to-date and informed on my condition. Plus, reading these studies gives me hope that good things are on the way! It amazes me how much they learn every year! Dr. Goodman told me that he thinks there is an autoimmune component to this illness and I feel like they are right on the crest of figuring it out. Exciting things on the horizon! Maybe when I get some extra energy and time, I'll go to medical school so I can solve this mystery myself! :-)
"An intelligent heart acquires knowledge, and the ear of the wise seeks knowledge." Proverbs 18:15
Amy
Tuesday, April 30, 2013
Flare, Flare Go Away...
For those of us in the chronic illness business, a flare is a period of time when our symptoms are markedly worse than usual. Starting last night, I'm having a flare within a flare. Lucky me!
On December 3, 2012, I woke up from gallbladder surgery and my life was different. I knew it the moment my eyes opened. My body was in full attack mode, the start of Flare #1. I've been doing much better the last month or so. Definitely not my old self, but I'm functioning and caring for my precious babies without assistance and that's a win in my book! Then last night my body decided to give me a little reminder flare. Just in case I forgot how bad it can be.
This episode wasn't as bad as the episodes I experienced last December, but it was bad enough. I felt off all day yesterday. I can't pinpoint exact symptoms, just a general yuck feeling. Tired, nauseous, just off! Then last night, I had an episode after eating supper. It's interesting to me that my bad episodes are either shortly after supper or just as I'm drifting off to sleep. Anyways, I ate and shortly after I got that all too familiar wave of tingles and chills. This is always how these episodes start. Soon after, I got extremely nauseous and my resting heart rate went to 132 beats per minute (it's usually closer to 60). Then, I got the strange burning sensation in my stomach. It's not like an indigestion burning. It's more like the way your muscles or lungs burn after a workout. Like they are starving for oxygen. Luckily, this all passed within an hour, but I was left exhausted.
This morning I'm left with the after effects. Some lingering nausea, very weak arms, and a heart that wants to race every time I lift my finger. So, I'm loading up on Gatorade and forced myself to exercise, which is not easy to do when your heart is racing just sitting down! I'm extremely proud of the fact that I now have my Body Mass Index back into the normal range and I intend to keep it there! There is so much in my body that I can't control, so I am adamant about controlling the things I can. If there's one positive that's come from this flare, it's that I'm now more focused on living a healthy lifestyle (I've got a long ways to go though)!
On a side note, this is the worst episode I've had since my body started making its turn around. Dr. Goodman had me stop taking Zyrtec and Zantac (which I had started when I suspected I might be dealing with a mast cell issue) so we could focus on correcting my deficiencies. I'm not sure if it's coincidence or not that this bad episode comes after I stopped those medications. It's the only change I've made that may have caused this flare within a flare. Not that my body ever needs an excuse to act wacky! Dr. G. really wanted me to give these supplements three or four weeks before adding in the "Mast Cell Cocktail" so I'm going to try my hardest to stick it out. As Dori from Finding Nemo would say, "Just keep swimming!"
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10
Amy
P.S. I hope I'm not being too much of a complainer with my posts lately, but this blog is a great way for me to journal these episodes! I'm very forgetful and by next week I probably won't even remember that I had an episode! :-)
On December 3, 2012, I woke up from gallbladder surgery and my life was different. I knew it the moment my eyes opened. My body was in full attack mode, the start of Flare #1. I've been doing much better the last month or so. Definitely not my old self, but I'm functioning and caring for my precious babies without assistance and that's a win in my book! Then last night my body decided to give me a little reminder flare. Just in case I forgot how bad it can be.
This episode wasn't as bad as the episodes I experienced last December, but it was bad enough. I felt off all day yesterday. I can't pinpoint exact symptoms, just a general yuck feeling. Tired, nauseous, just off! Then last night, I had an episode after eating supper. It's interesting to me that my bad episodes are either shortly after supper or just as I'm drifting off to sleep. Anyways, I ate and shortly after I got that all too familiar wave of tingles and chills. This is always how these episodes start. Soon after, I got extremely nauseous and my resting heart rate went to 132 beats per minute (it's usually closer to 60). Then, I got the strange burning sensation in my stomach. It's not like an indigestion burning. It's more like the way your muscles or lungs burn after a workout. Like they are starving for oxygen. Luckily, this all passed within an hour, but I was left exhausted.
This morning I'm left with the after effects. Some lingering nausea, very weak arms, and a heart that wants to race every time I lift my finger. So, I'm loading up on Gatorade and forced myself to exercise, which is not easy to do when your heart is racing just sitting down! I'm extremely proud of the fact that I now have my Body Mass Index back into the normal range and I intend to keep it there! There is so much in my body that I can't control, so I am adamant about controlling the things I can. If there's one positive that's come from this flare, it's that I'm now more focused on living a healthy lifestyle (I've got a long ways to go though)!
On a side note, this is the worst episode I've had since my body started making its turn around. Dr. Goodman had me stop taking Zyrtec and Zantac (which I had started when I suspected I might be dealing with a mast cell issue) so we could focus on correcting my deficiencies. I'm not sure if it's coincidence or not that this bad episode comes after I stopped those medications. It's the only change I've made that may have caused this flare within a flare. Not that my body ever needs an excuse to act wacky! Dr. G. really wanted me to give these supplements three or four weeks before adding in the "Mast Cell Cocktail" so I'm going to try my hardest to stick it out. As Dori from Finding Nemo would say, "Just keep swimming!"
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10
Amy
P.S. I hope I'm not being too much of a complainer with my posts lately, but this blog is a great way for me to journal these episodes! I'm very forgetful and by next week I probably won't even remember that I had an episode! :-)
Friday, April 26, 2013
Salty, salt, salt...
My life revolves around salt! When I first went to Mayo Clinic in 2007, it was recommended I consume 3 grams of salt a day. That has now been increased to 10 grams a day! That's crazy talk! It's nearly impossible and I'd challenge you to try it, but I don't want you to have a heart attack.
The theory behind eating all this salt is that it will raise my blood volume and pressure. Some people think I'm lucky to have low blood pressure, but I've had it drop to 60/45 and that's a trippy experience! Who needs alcohol or drugs when you have a psychotic body? Anyways, back to the salt. I know it's not the answer to my problems. I have rare episodes where my blood pressure spikes through the roof (once to 175/140), so it's really all over the place. To me, it's obvious there is an underlying issue causing my body to have these blood pressure variations. But, until we figure that out, I eat salt!
To put this all in perspective, I would need to eat about 67 slices of bacon to get 10 grams of salt. I could also eat 11.5 cups of plain baked beans. If I'm having a bad tummy day and need bland food, I could eat 59 slices of white bread. If I'm having a sweet tooth, I could eat 31.25 cups of pudding. If I'm super thirsty, I could drink 37 bottles of Gatorade. If I'm feeling lazy, I could just chomp down 4.5 teaspoons of table salt (I'm sure my stomach would love that, see picture below)! I think you get the point!
So, I'm pushing salts as much as I can but probably not anywhere near 10 grams a day. Dr. Goodman recommended it, so I'm obviously listening. He is the expert after all. A not-so-tiny part of my brain worries about the side effects this salt consumption might bring along down the road. There was a recent study that linked high sodium diets and autoimmune diseases and I already have autoimmune tendencies. But, I will trust my doctor. Maybe, all of this salt will actually preserve my internal organs and I will live forever! Ha!
"After this lived Job an hundred and forty years, and saw his sons, and his sons' sons, [even] four generations." Job 42:16 (Maybe he ate a lot of salt, too!)
Amy
*I should probably add that you should not go on a high sodium diet unless advised to do so by your doctor. For most people, this is a very bad idea! The only thing worse would be to go on a high fat diet in an attempt to add cushion and avoid injuries. Terrible idea!
The theory behind eating all this salt is that it will raise my blood volume and pressure. Some people think I'm lucky to have low blood pressure, but I've had it drop to 60/45 and that's a trippy experience! Who needs alcohol or drugs when you have a psychotic body? Anyways, back to the salt. I know it's not the answer to my problems. I have rare episodes where my blood pressure spikes through the roof (once to 175/140), so it's really all over the place. To me, it's obvious there is an underlying issue causing my body to have these blood pressure variations. But, until we figure that out, I eat salt!
To put this all in perspective, I would need to eat about 67 slices of bacon to get 10 grams of salt. I could also eat 11.5 cups of plain baked beans. If I'm having a bad tummy day and need bland food, I could eat 59 slices of white bread. If I'm having a sweet tooth, I could eat 31.25 cups of pudding. If I'm super thirsty, I could drink 37 bottles of Gatorade. If I'm feeling lazy, I could just chomp down 4.5 teaspoons of table salt (I'm sure my stomach would love that, see picture below)! I think you get the point!
So, I'm pushing salts as much as I can but probably not anywhere near 10 grams a day. Dr. Goodman recommended it, so I'm obviously listening. He is the expert after all. A not-so-tiny part of my brain worries about the side effects this salt consumption might bring along down the road. There was a recent study that linked high sodium diets and autoimmune diseases and I already have autoimmune tendencies. But, I will trust my doctor. Maybe, all of this salt will actually preserve my internal organs and I will live forever! Ha!
"After this lived Job an hundred and forty years, and saw his sons, and his sons' sons, [even] four generations." Job 42:16 (Maybe he ate a lot of salt, too!)
Amy
*I should probably add that you should not go on a high sodium diet unless advised to do so by your doctor. For most people, this is a very bad idea! The only thing worse would be to go on a high fat diet in an attempt to add cushion and avoid injuries. Terrible idea!
Tuesday, April 23, 2013
Just Call me Grammy Amy....
Gray hair! Seriously?! This is the third one I've found since this last flare started. Of course, I plucked those unwanted strands as fast as possible. I didn't want any any of their friends getting any ideas about making my head their new permanent home. Now I'm just crossing my fingers that the old wives tale about gray hair isn't true (something about plucking one gray hair will make a bajillion more appear). So, first I started losing my hair by the handfuls and now it's coming back in gray. I'm starting to doubt that fact that I'm actually 27 and not 77. I even have Grammy hobbies (reading and crochet).
Other than that small life catastrophe, the past couple of days have gone fairly well. I'm not feeling great, but it's much better than I expected. I've started taking the B12 and Iron supplements. So far, no noticeable difference but I know these things take time to build up in your system. One of the amazing things that happened while I was in Arizona was that my pesky head pressure/pain issues disappeared. Like magic! After being there for a couple of days, that symptom was completely gone and it was NICE!! Well, now it's back. I'm choosing to blame it on the cold weather and that I'm obviously just not supposed to live in the frozen tundra! That may be a stretch, but it honestly might have something to do with pressure systems. I don't know how many doctors would agree with this, but I feel like weather and climate play a huge role in our health and overall well-being. Any old-timer will tell you that their bones and joints get achy right before a big storm. I'm not a professional, but I don't think that's a coincidence. At least after having the "MRI From Hell" as I like to call it, I know that I'm not dealing with a brain tumor or aneurism. There is comfort in finding out what you don't have, even if you aren't sure what you do have!
That brings on a whole separate topic of being patient. I knew when I went to Mayo, that I wouldn't come home with a new diagnosis and a magic pill to fix it. That's just not how it works. As I suspected, my tests mostly looked good. The B12 and Iron deficiencies are huge and hopefully addressing those will make a big difference, but I doubt they are causing all of these symptoms. So, I have to find the patience to take things one step at a time. I start by addressing those issues because they were the only obvious things that showed up. If I still don't feel better, I try the Mast Cell Cocktail. If that doesn't work, it's back to the drawing board. It can get a little hard to see the light at the end of the tunnel, but at least I now have a plan and a knowledgeable doctor to help me along the way. That in itself is a huge comfort! Patience and prayer! I will get through this!
"I will instruct you and teach you about the direction you should go. I’ll advise you and keep my eye on you." Psalm 32:8
Amy
Other than that small life catastrophe, the past couple of days have gone fairly well. I'm not feeling great, but it's much better than I expected. I've started taking the B12 and Iron supplements. So far, no noticeable difference but I know these things take time to build up in your system. One of the amazing things that happened while I was in Arizona was that my pesky head pressure/pain issues disappeared. Like magic! After being there for a couple of days, that symptom was completely gone and it was NICE!! Well, now it's back. I'm choosing to blame it on the cold weather and that I'm obviously just not supposed to live in the frozen tundra! That may be a stretch, but it honestly might have something to do with pressure systems. I don't know how many doctors would agree with this, but I feel like weather and climate play a huge role in our health and overall well-being. Any old-timer will tell you that their bones and joints get achy right before a big storm. I'm not a professional, but I don't think that's a coincidence. At least after having the "MRI From Hell" as I like to call it, I know that I'm not dealing with a brain tumor or aneurism. There is comfort in finding out what you don't have, even if you aren't sure what you do have!
That brings on a whole separate topic of being patient. I knew when I went to Mayo, that I wouldn't come home with a new diagnosis and a magic pill to fix it. That's just not how it works. As I suspected, my tests mostly looked good. The B12 and Iron deficiencies are huge and hopefully addressing those will make a big difference, but I doubt they are causing all of these symptoms. So, I have to find the patience to take things one step at a time. I start by addressing those issues because they were the only obvious things that showed up. If I still don't feel better, I try the Mast Cell Cocktail. If that doesn't work, it's back to the drawing board. It can get a little hard to see the light at the end of the tunnel, but at least I now have a plan and a knowledgeable doctor to help me along the way. That in itself is a huge comfort! Patience and prayer! I will get through this!
"I will instruct you and teach you about the direction you should go. I’ll advise you and keep my eye on you." Psalm 32:8
Amy
Friday, April 19, 2013
Mayo Clinic - The Final Day!
I met with Dr. Goodman this morning. What a roller coaster of emotions again! Most importantly, my brain MRI was all clear! Thank The Lord! He thinks my head pressure issues can be attributed to the POTS (probably a mix of poor blood flow and some inflammation).
He ran a lot of tests looking for different autoimmune diseases. Nothing showed up on any if those and to my knowledge he didn't run the ANA which I know is sometimes used to look at the overall autoimmune system. Again, I'm not a doctor so don't quote me on any of this! :-) The only things that showed up on my tests were anemia and extremely low Vitamin B12 levels. So, the plan is to first correct those issues and then see how I'm feeling. If I'm still not having a noticeable improvement, he wrote me prescriptions for the Mast Cell cocktail (Cromolyn, Pepcid, and Allegra). One thing at a time though.
I don't have Hyper POTS. Hyper POTS is the type of POTS that usually is associated with mast cell issues, but with my symptoms Dr. G. still isn't willing to rule out mast cell. I should mention that Hyper POTS has to do with the body releasing too much norepinephrine. Mast Cells are responsible for allergic reactions and for some reason there is a group of POTSies who have over active mast cells which creates fake allergic reactions. The third condition that seems to frequently go with this trio diagnosis, is Ehlers-Danlos Syndrome. EDS is a connective tissue disorder. There are many forms of EDS, but from what I've read it has to do with the body not producing collagen correctly. I have symptoms of this as well (hyper mobile joints and fragile skin that doesn't heal well).
Doctors haven't put together all of the pieces about why these conditions tend to go together. EDS and Mast Cell Activation Disorder make sense because mast cells are housed in connective tissues. EDS is genetic and I feel there is a link on my Mom's side of the family. There is a history of joint problems and other issues that I feel fit the bill! I'm not sure what happened with me to create this perfect storm of health issues, though! Maybe one day, doctors will put all these pieces together and be able to help more! For now, I feel like I've paved the way for my own little family. There is a 50% chance that EDS can be passed on so I pray that my girls don't have it! But, if they do, we now know what it is and they won't have to go through the years of tests, doctors visits, and tears that I have.
Thank you all again for all of the thoughts and prayers! It honestly means the world to me. I am beyond excited to fly home to the frozen tundra in the morning and see my beautiful babies! I'm also going to try my best to get back into my normal routine! I'll keep updating frequently to let you all know how I'm doing! I've been absolutely blown away by the response I've received from this little blog. I'm obviously not a writer, but I'm ecstatic that my story seems to be helping others! God is good! :-)
Amy
He ran a lot of tests looking for different autoimmune diseases. Nothing showed up on any if those and to my knowledge he didn't run the ANA which I know is sometimes used to look at the overall autoimmune system. Again, I'm not a doctor so don't quote me on any of this! :-) The only things that showed up on my tests were anemia and extremely low Vitamin B12 levels. So, the plan is to first correct those issues and then see how I'm feeling. If I'm still not having a noticeable improvement, he wrote me prescriptions for the Mast Cell cocktail (Cromolyn, Pepcid, and Allegra). One thing at a time though.
I don't have Hyper POTS. Hyper POTS is the type of POTS that usually is associated with mast cell issues, but with my symptoms Dr. G. still isn't willing to rule out mast cell. I should mention that Hyper POTS has to do with the body releasing too much norepinephrine. Mast Cells are responsible for allergic reactions and for some reason there is a group of POTSies who have over active mast cells which creates fake allergic reactions. The third condition that seems to frequently go with this trio diagnosis, is Ehlers-Danlos Syndrome. EDS is a connective tissue disorder. There are many forms of EDS, but from what I've read it has to do with the body not producing collagen correctly. I have symptoms of this as well (hyper mobile joints and fragile skin that doesn't heal well).
Doctors haven't put together all of the pieces about why these conditions tend to go together. EDS and Mast Cell Activation Disorder make sense because mast cells are housed in connective tissues. EDS is genetic and I feel there is a link on my Mom's side of the family. There is a history of joint problems and other issues that I feel fit the bill! I'm not sure what happened with me to create this perfect storm of health issues, though! Maybe one day, doctors will put all these pieces together and be able to help more! For now, I feel like I've paved the way for my own little family. There is a 50% chance that EDS can be passed on so I pray that my girls don't have it! But, if they do, we now know what it is and they won't have to go through the years of tests, doctors visits, and tears that I have.
Thank you all again for all of the thoughts and prayers! It honestly means the world to me. I am beyond excited to fly home to the frozen tundra in the morning and see my beautiful babies! I'm also going to try my best to get back into my normal routine! I'll keep updating frequently to let you all know how I'm doing! I've been absolutely blown away by the response I've received from this little blog. I'm obviously not a writer, but I'm ecstatic that my story seems to be helping others! God is good! :-)
Amy
Thursday, April 18, 2013
Mayo Clinic - Day 4
No appointments today! Thank God for that! My poor body is in serious protest mode right now. That MRI episode seems to have sent me over the edge a bit.
Last night was pretty calm, but my body was acting out of control. I was nauseous and had a burning sensation through my entire digestive tract. I've had this feeling before after having a bad episode. It's almost like the cells in my body get all fired up and really irritate my digestive system. My heart also had a mind of its own. I was lying in bed and every time I wiggled (even just reposition my leg) my heart rate went through the roof. So, I took a Zyrtec and Zantac because I didn't know what else to do and I was eventually able to fall asleep.
Today has been a bit better, but still not great. This morning I had some serious arm weakness. We're talking "barely able to lift my coffee cup" kind of weakness. That passed (as it usually does) and I've been left with some nausea and vertigo. Hopefully, by tomorrow I'll be back to 50% again. That's quite the goal isn't it?! Ha!
I did muster up the energy to go to a park in Fountain Hills with my hubby. It was relaxing and fun to walk around, holding hands, watching the ducks. I'm getting very lonesome for my babies, though! I can't wait to get home to them on Saturday and get some serious cuddle time! Tomorrow, I meet with Dr. G. in the morning. I have a lot of questions for him and I'm praying I don't forget anything! So if you're the praying type, please say one for me so that I can sleep well tonight and my brain will be crisp and ready for my consultation in the morning! :-)
Amy
Last night was pretty calm, but my body was acting out of control. I was nauseous and had a burning sensation through my entire digestive tract. I've had this feeling before after having a bad episode. It's almost like the cells in my body get all fired up and really irritate my digestive system. My heart also had a mind of its own. I was lying in bed and every time I wiggled (even just reposition my leg) my heart rate went through the roof. So, I took a Zyrtec and Zantac because I didn't know what else to do and I was eventually able to fall asleep.
Today has been a bit better, but still not great. This morning I had some serious arm weakness. We're talking "barely able to lift my coffee cup" kind of weakness. That passed (as it usually does) and I've been left with some nausea and vertigo. Hopefully, by tomorrow I'll be back to 50% again. That's quite the goal isn't it?! Ha!
I did muster up the energy to go to a park in Fountain Hills with my hubby. It was relaxing and fun to walk around, holding hands, watching the ducks. I'm getting very lonesome for my babies, though! I can't wait to get home to them on Saturday and get some serious cuddle time! Tomorrow, I meet with Dr. G. in the morning. I have a lot of questions for him and I'm praying I don't forget anything! So if you're the praying type, please say one for me so that I can sleep well tonight and my brain will be crisp and ready for my consultation in the morning! :-)
Amy
Wednesday, April 17, 2013
Mayo Clinic - Day 3
Oh Day 3! How much I've hated you! I thought this was going to be such an easy day. The only thing on my schedule was an MRI on my head to address some of the pressure/ headache issues I've been having.
I'm not claustrophobic so I wasn't too nervous about the scan. I changed into some lovely apparel (see picture below) and then had to wait for an hour and a half because they were behind schedule! I'm a fairly patient person and we didn't have any other plans today so it wasn't that much of a problem. The beginning of the scan went fine. It took about twenty minutes total with each scan taking between two to five minutes. Then they pulled me out of the machine to inject the contrast. This is where things got interesting. I've had CT scans before and never had an issue with the contrast but I had a horrific episode with this one! She injected the contrast and right as she was telling me I shouldn't feel anything a wave of nausea came over me and my entire body started to feel warm. Then my heart kicked it into overdrive! I have never had my heart race like that while lying down! The room started going black so I started praying and focusing on breathing. After what seemed like an eternity (but was probably only a minute or two) my heart started to calm down and we were able to finish the scan.
I never got hives or had trouble breathing so I know it wasn't a true allergic reaction. I also got a sunburn (dumb I know) yesterday so I couldn't really tell if I was flushing. So, I have no idea if that was a Mast Cell issue or just my funky heart. I do know it wasn't an anxiety attack because I was completely calm at the time and excited to almost be done with the scan. My strange body!
The good news is I am done with my testing! Hooray! It was a scary and emotional day and I don't think I would be able to go through much more. We meet with Dr. Goodman Friday morning to discuss results and make a game plan. I'm hoping to view what results I can on my phone and make a list of questions for him. Me and my lists! :-)
By the way, I don't want my experience to scare anyone who needs to have an MRI. There is something crazy going on with my body right now that is causing it to over-react to things that normally would not bother me. Most people do fine with that contrast and there is nothing to worry about! Keep in mind that a couple of months ago my body was having similar reactions every time I took a bite of solid food! Also, I apologize for any typos as I'm still posting from my phone and this tiny keyboard is very annoying!
Until tomorrow,
Amy
I'm not claustrophobic so I wasn't too nervous about the scan. I changed into some lovely apparel (see picture below) and then had to wait for an hour and a half because they were behind schedule! I'm a fairly patient person and we didn't have any other plans today so it wasn't that much of a problem. The beginning of the scan went fine. It took about twenty minutes total with each scan taking between two to five minutes. Then they pulled me out of the machine to inject the contrast. This is where things got interesting. I've had CT scans before and never had an issue with the contrast but I had a horrific episode with this one! She injected the contrast and right as she was telling me I shouldn't feel anything a wave of nausea came over me and my entire body started to feel warm. Then my heart kicked it into overdrive! I have never had my heart race like that while lying down! The room started going black so I started praying and focusing on breathing. After what seemed like an eternity (but was probably only a minute or two) my heart started to calm down and we were able to finish the scan.
I never got hives or had trouble breathing so I know it wasn't a true allergic reaction. I also got a sunburn (dumb I know) yesterday so I couldn't really tell if I was flushing. So, I have no idea if that was a Mast Cell issue or just my funky heart. I do know it wasn't an anxiety attack because I was completely calm at the time and excited to almost be done with the scan. My strange body!
The good news is I am done with my testing! Hooray! It was a scary and emotional day and I don't think I would be able to go through much more. We meet with Dr. Goodman Friday morning to discuss results and make a game plan. I'm hoping to view what results I can on my phone and make a list of questions for him. Me and my lists! :-)
By the way, I don't want my experience to scare anyone who needs to have an MRI. There is something crazy going on with my body right now that is causing it to over-react to things that normally would not bother me. Most people do fine with that contrast and there is nothing to worry about! Keep in mind that a couple of months ago my body was having similar reactions every time I took a bite of solid food! Also, I apologize for any typos as I'm still posting from my phone and this tiny keyboard is very annoying!
Until tomorrow,
Amy
Tuesday, April 16, 2013
Mayo Clinic - Day 2
Exhausted! That's how I feel free my biggest day of testing. On paper it didn't look all that terrible but my body is telling me otherwise. I'm glad it's over and now I can enjoy the rest of my week!
Today started with lots of bloodwork. Mayo Clinic is fantastically efficient so it was all done at once with only one poke. Too bad that poke came from a needle the equivalent of a needle used for cow vaccines. Those at home know what I'm talking about. For those unfamiliar with bovine vaccinations, the needles are massive! The nurse was great and got me with one poke and all was well. She took about six vials of blood. Within the hour, I was able to review most of the results on my Mayo Patient app. They checked for a lot of things and I'll have a better understanding of it all after I follow-up with Dr. G. on Friday. What I can tell is that I don't have chronic kidney failure (hooray), I'm anemic (which I already knew), and I have low Vitamin B12 levels (which I've read is fairly common in POTSies).
Next, was the catecholamine test. The nurse started the IV with the above mentioned ginormous needle and then left me in a dark room to rest for thirty minutes. She then snuck into the room, drew some blood for the IV, and took a blood pressure and pulse reading. Then, the obnoxious fluorescent lights come back on and I had to stand for ten minutes (and I didn't pass out!), after which she repeated the blood draw, blood pressure, and pulse. This test measures your body's chemical reaction to standing. It determines if you have Hyperadrenergic POTS. I've always had symptoms of Hyper POTS but always passed this test so I guess I'm just a breed of my own! I don't yet know the results of today's test.
Then, we moved on to the Autonomic Reflex Screening. Ugh! This is the one that really wiped me out! It started with the sweat test. Four cells are placed on your skin (arm, leg, and foot). A chemical solution is then distributed through those cells onto your skin. The nurse then turned the machine on which activated the cells. This part got a little uncomfortable. It feels a little like a bee sting that lasts for five minutes. It's not terrible, but not the most comfortable either. Next was the breathing exercises. These always make me symptomatic. It started with deep breathing. A light indicator lets you know when to breath in and out. I took eight deep breaths and then rested before repeating the test. My heart rate went over 100 beats per minute with this test even though I was lying down. So crazy! Next, I had to blow in a straw until a pressure monitor read 40. I had to continue blowing and keep the pressure at 40 for 15 seconds. Nearly impossible for me! My heart rate went through the roof and I was light headed and miserable. This explains why I can't blow up balloons! :-) We finished up the screening with the lovely Tilt Table Test. I loath the TTT! They strapped me to the table and slowly raised it to a near standing position. I almost fainted instantly. I was not able to see my heart rate readings but the nurse said it spiked really high. I was able to push through and had waves of tachycardia. It never went away but got worse and then a little better and then worse, etc. I made it almost to the end of the ten minutes before asking her to lie me down!
And then I got to eat! Finally! A big yummy cheeseburger! :-) Now I'm feeling extremely fatigued and weak and will be spending the rest of the day relaxing. Tomorrow shouldn't be as bad, so we shall see! Another day, another adventure!
Amy
Today started with lots of bloodwork. Mayo Clinic is fantastically efficient so it was all done at once with only one poke. Too bad that poke came from a needle the equivalent of a needle used for cow vaccines. Those at home know what I'm talking about. For those unfamiliar with bovine vaccinations, the needles are massive! The nurse was great and got me with one poke and all was well. She took about six vials of blood. Within the hour, I was able to review most of the results on my Mayo Patient app. They checked for a lot of things and I'll have a better understanding of it all after I follow-up with Dr. G. on Friday. What I can tell is that I don't have chronic kidney failure (hooray), I'm anemic (which I already knew), and I have low Vitamin B12 levels (which I've read is fairly common in POTSies).
Next, was the catecholamine test. The nurse started the IV with the above mentioned ginormous needle and then left me in a dark room to rest for thirty minutes. She then snuck into the room, drew some blood for the IV, and took a blood pressure and pulse reading. Then, the obnoxious fluorescent lights come back on and I had to stand for ten minutes (and I didn't pass out!), after which she repeated the blood draw, blood pressure, and pulse. This test measures your body's chemical reaction to standing. It determines if you have Hyperadrenergic POTS. I've always had symptoms of Hyper POTS but always passed this test so I guess I'm just a breed of my own! I don't yet know the results of today's test.
Then, we moved on to the Autonomic Reflex Screening. Ugh! This is the one that really wiped me out! It started with the sweat test. Four cells are placed on your skin (arm, leg, and foot). A chemical solution is then distributed through those cells onto your skin. The nurse then turned the machine on which activated the cells. This part got a little uncomfortable. It feels a little like a bee sting that lasts for five minutes. It's not terrible, but not the most comfortable either. Next was the breathing exercises. These always make me symptomatic. It started with deep breathing. A light indicator lets you know when to breath in and out. I took eight deep breaths and then rested before repeating the test. My heart rate went over 100 beats per minute with this test even though I was lying down. So crazy! Next, I had to blow in a straw until a pressure monitor read 40. I had to continue blowing and keep the pressure at 40 for 15 seconds. Nearly impossible for me! My heart rate went through the roof and I was light headed and miserable. This explains why I can't blow up balloons! :-) We finished up the screening with the lovely Tilt Table Test. I loath the TTT! They strapped me to the table and slowly raised it to a near standing position. I almost fainted instantly. I was not able to see my heart rate readings but the nurse said it spiked really high. I was able to push through and had waves of tachycardia. It never went away but got worse and then a little better and then worse, etc. I made it almost to the end of the ten minutes before asking her to lie me down!
And then I got to eat! Finally! A big yummy cheeseburger! :-) Now I'm feeling extremely fatigued and weak and will be spending the rest of the day relaxing. Tomorrow shouldn't be as bad, so we shall see! Another day, another adventure!
Amy
Monday, April 15, 2013
Mayo Clinic -Day 1
Well, I had my consultation with Dr. Goodman this morning. As always, he was terrific. If you have POTS, Dr. G. really is the best of the best. He was not shocked at all to hear of my symptoms. He said that its common for us POTSies to have extreme symptoms after surgery. They aren't sure of the mechanisms but something about the surgery seems to fire up our autoimmune systems. Unfortunately, this doesn't always show up in blood work.
He also noted that I have joint hyper mobility. Anyone familiar with POTS, Ehlers Danlos Syndrome, and Mast Cell Activation Disorder knows that these three things commonly go together. Since my surgery, I've thought I might be a lucky winner who has this trio diagnosis. Dr. G. seems to think the same. For now this is all speculation.
Tomorrow, I will be the human pin cushion. Blood work and catecholemine tests in the morning. It's the test where you lie flat in a dark room for thirty minutes, they draw blood, then you stand with the lights on and they draw more blood. This tests your body's chemical response between being relaxed verses stimulated. Tomorrow, I will also do the Autonomic Reflex Screening. This consists of the Tilt Table Test, some breathing exercises, and a sweat/temperature test. All of this before noon! I expect to be completely worn out by then! Oh, I'll also be doing a 24 hour urine collection. Lucky me! I get to carry around a pee jug all day!
He has more tests planned for later in the week to address my anemia and head pressure issues. One day at a time, though! So for now I am relaxing and resting. A huge weight has been lifted off my shoulders and I'm finally getting some answers and help! Hooray!
Amy
He also noted that I have joint hyper mobility. Anyone familiar with POTS, Ehlers Danlos Syndrome, and Mast Cell Activation Disorder knows that these three things commonly go together. Since my surgery, I've thought I might be a lucky winner who has this trio diagnosis. Dr. G. seems to think the same. For now this is all speculation.
Tomorrow, I will be the human pin cushion. Blood work and catecholemine tests in the morning. It's the test where you lie flat in a dark room for thirty minutes, they draw blood, then you stand with the lights on and they draw more blood. This tests your body's chemical response between being relaxed verses stimulated. Tomorrow, I will also do the Autonomic Reflex Screening. This consists of the Tilt Table Test, some breathing exercises, and a sweat/temperature test. All of this before noon! I expect to be completely worn out by then! Oh, I'll also be doing a 24 hour urine collection. Lucky me! I get to carry around a pee jug all day!
He has more tests planned for later in the week to address my anemia and head pressure issues. One day at a time, though! So for now I am relaxing and resting. A huge weight has been lifted off my shoulders and I'm finally getting some answers and help! Hooray!
Amy
Sunday, April 14, 2013
Mayo Clinic Trip
Wow! What a crazy couple of days! Mother Nature got her panties in a bunch and put a kink in our travel plans! We had to leave a day early to avoid a Spring blizzard of epic proportions. It cost us a small fortune but we made it to Arizona and I am on my way to getting some much needed help!
We flew in yesterday and the stress of traveling really took its toll! I felt terrible last night. Just my usual racing heart, adrenaline surges, head pressure, et cetera, et cetera. After a good nights sleep, I felt much better and we've been able to do some shopping and enjoy our day.
My appointments start bright and early tomorrow. I check in at 7:30 and have a consultation with Dr. Goodman at 8:00. I'm strangely calm this trip. It's my fourth Mayo trip so I kind of know the routine and I already know I really like Dr. G. I'm just excited to hopefully get some more answers and help!
I'll try to keep posting frequently. It will obviously depend on how worn out I am from the tests. Also, I apologize in advance for the many typos you will probably see. I'm posting from my phone and my fat thumbs combined with my POTSie shakes and tiny phone keyboards is a combo for disaster.
Well, I'm off to soak up a little sun! For those of my family and friends battling this dangerous storm back home, please stay safe!
Amy
We flew in yesterday and the stress of traveling really took its toll! I felt terrible last night. Just my usual racing heart, adrenaline surges, head pressure, et cetera, et cetera. After a good nights sleep, I felt much better and we've been able to do some shopping and enjoy our day.
My appointments start bright and early tomorrow. I check in at 7:30 and have a consultation with Dr. Goodman at 8:00. I'm strangely calm this trip. It's my fourth Mayo trip so I kind of know the routine and I already know I really like Dr. G. I'm just excited to hopefully get some more answers and help!
I'll try to keep posting frequently. It will obviously depend on how worn out I am from the tests. Also, I apologize in advance for the many typos you will probably see. I'm posting from my phone and my fat thumbs combined with my POTSie shakes and tiny phone keyboards is a combo for disaster.
Well, I'm off to soak up a little sun! For those of my family and friends battling this dangerous storm back home, please stay safe!
Amy
Tuesday, April 9, 2013
Busy, Busy Bee...
Wow! What a hectic week! Both of my girlies came down with RSV! Here I thought we were going to make it through the winter without any major sicknesses (well besides me). My youngest even had to go to the Emergency Room on Saturday night because her wheezing got so bad. She's on Albuterol treatments now and slowly getting better. Thank God they both got sick last week and not this week! I don't know how I would have forced myself to get on a plane Sunday, if I had taken my baby to the ER the night before. Ugh! Everything worked out!
So now I'm busy packing and planning for my Mayo Clinic trip. We fly out this Sunday! I've spent the last couple of months impatiently waiting for this appointment and here it is! By the way, I've made a little discovery. Mayo Clinic has a patient app for iPhones and iPads and it is simply terrific! I've downloaded it and it has everything. My appointments are programmed in, with the options to add reminders to my phone. All of my doctors notes and lab reports are also listed in the program. I'm told that when I get to Mayo, I'll be able to check this app after my appointments and get instant test results (even before I've followed-up with the doctor). What an amazing world we live in! So, if you're going to Mayo Clinic or have been there in the past, I would download this app. Just go to the app store and search for Mayo Clinic. You will need to make a patient account. If you don't have an iPhone or iPad, you can still create a patient account at the Mayo Clinic website and I highly recommend you do! There is nothing better than instant test results and doctor's notes!
The packing portion of my week includes many, many lists! I don't trust my terrible memory for anything! I'm lucky I still know my own name! So I have lists. Lists of things for appointments, lists of everyday necessities, lists of symptoms, lists of weird medical issues I've had. I have lists coming out my ears! I'll probably still forget something! Did I mention we had a blizzard here yesterday? Bring on the sunshine! Arizona, I'll see you soon!
"The light shines in the darkness, and the darkness has not overcome it." John 1:5
Amy
So now I'm busy packing and planning for my Mayo Clinic trip. We fly out this Sunday! I've spent the last couple of months impatiently waiting for this appointment and here it is! By the way, I've made a little discovery. Mayo Clinic has a patient app for iPhones and iPads and it is simply terrific! I've downloaded it and it has everything. My appointments are programmed in, with the options to add reminders to my phone. All of my doctors notes and lab reports are also listed in the program. I'm told that when I get to Mayo, I'll be able to check this app after my appointments and get instant test results (even before I've followed-up with the doctor). What an amazing world we live in! So, if you're going to Mayo Clinic or have been there in the past, I would download this app. Just go to the app store and search for Mayo Clinic. You will need to make a patient account. If you don't have an iPhone or iPad, you can still create a patient account at the Mayo Clinic website and I highly recommend you do! There is nothing better than instant test results and doctor's notes!
The packing portion of my week includes many, many lists! I don't trust my terrible memory for anything! I'm lucky I still know my own name! So I have lists. Lists of things for appointments, lists of everyday necessities, lists of symptoms, lists of weird medical issues I've had. I have lists coming out my ears! I'll probably still forget something! Did I mention we had a blizzard here yesterday? Bring on the sunshine! Arizona, I'll see you soon!
"The light shines in the darkness, and the darkness has not overcome it." John 1:5
Amy
Tuesday, April 2, 2013
Some Things Are Worth Fighting For...
Ugh! That moment when you NEED coffee, really need it, but the hubby just left for work and I've realized all to late that my hands are not working this morning. They are completely stiff and achy! The foil cover on the coffee creamer was created by Lucifer himself! I can and do drink my coffee black, but I was craving creamer this morning! I've had sick kiddos the last couple of days. I've been surrounded by buggers, fevers, and poop and if I'm going to survive this day I NEED COFFEE WITH CREAMER!!! I was willing to fight for it and fight I did! Just as I was about to break down in tears, the heavens opened, the angels began to sing, and that devilish foil peeled off of the creamer container! Maybe I'm being slightly dramatic, but it was a moment worth celebrating!
Catastrophe averted! But, speaking of things worth fighting for... I had decided I wanted to be medication free when I went to Mayo in a couple of weeks. I'm not taking many meds right now. Just a Zyrtec and Zantac every morning so I thought it would be no big deal. I was wrong! Apparently those little pills are helping more than I realized. I tried to skip them yesterday and by noon I felt so crummy that I had to take them. I was shaking, had a headache, and was so nauseous I couldn't eat! So, now I have a decision. I've talked before about how great I am with decisions! Ha!
I was really hoping to be completely off all medications so the tests at Mayo reflected how my body is really acting on its own. If I only had a two hour car drive to get to Mayo, I would suffer through, stop the meds, and deal with the consequences. That's not the case, though. We're flying. Those who know me, realize what a basket case I can be on an airplane. It probably didn't help that the first time I ever flew, an older lady sitting next to me mentioned her worry that the landing gear wouldn't fully lock in place just as we were landing. Gee, thanks for putting that thought in my head! So, my stomach is usually a bit knotted up when I need to travel. I don't need to add nausea from stopping my "cocktail" as I call it! It's not so much myself that I worry about, as the other travelers around me. I'm sure they would rather I didn't share my morning breakfast with them. Not to mention the hassle of an emergency landing if I tried to jump out of my seat to make it to the delightful airplane restroom and subsequently pass out, hitting my head on the arm-rest of the poor business man next to me. Hypothetically of course! By the way, I don't think of myself as a pessimist. More a realist with a worriers perspective!
So, I'll go drink my lovely cup of coffee and mull it over. To med or not to med. Wish me luck!
“For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him." John 3:16-17
Amy
Tuesday, March 26, 2013
Rollercoaster of Emotions...
Apparently my body didn't get the memo about me being a princess. This week has been miserable and it's my birthday week. Yes, I take an entire week for my birthday. I am a princess after all! Some of it is probably my fault. I did clean and scrub cupboards yesterday. As an almost 27 year old, I feel I should be able to do tasks like these. As a POTSie, I should know better. As a result, I was awake most of the night with head pressure, vertigo, tachycardia, and some intense burning in my stomach. These days it seems if my POTS acts up, so does my stomach. On a positive note, my blood pressure was nearly perfect! Hooray for that!
Enter emotions... I'm excited and terrified for this trip to Mayo. I'm excited at the thought of getting answers and hopefully help. I'm terrified of what the answers might be or worse that I still won't have answers. I'm trying to prepare myself for all of the possibilities. I know there isn't going to be a magic pill that makes me feel like a new person over night. I'm terrified of what diagnoses I might get. I know that's silly, but for some reason putting a label on the issue makes it that much more real. I'm even more terrified that I'll hear those dreaded words, "Everything looks fine." I doubt that will happen, but I've heard those words too many times. I think it's a weird experience for doctors when they give a patient what they view as good news and that patient bursts into tears. How can every test look fine when I feel so close to death?
OK, time to push those nasty thoughts back into the dark hole where they belong. I'm finally getting the help I so desperately need! Plus a little trip with my husband! And, it's my birthday week! Another year older, another year bolder! What a year it was! This time last year, I was announcing to the world that I was having another baby! Life does not get any better than that moment when you first hold your child! It sometimes amazes me when I think of how quickly life can change. I went from that amazing moment when my daughter was born in September, to honestly feeling like my body was shutting down in December. I spent Christmas Day praying and wondering if I would have to get a feeding tube. I hadn't been able to eat any solid food for weeks. I've come so far since that day. I have major setbacks (like this week), but it's still nowhere near where I was Christmas Day. I'm extremely hopeful that with some help, my body will get back to "my normal" in no time! Maybe I'll even feel better than I've felt in years. A girl can dream right?! This next year is going to be a good one. I have so many things to look forward to and I can't wait to see what 27 has in store for me! Hopefully more ups than downs!
Enter emotions... I'm excited and terrified for this trip to Mayo. I'm excited at the thought of getting answers and hopefully help. I'm terrified of what the answers might be or worse that I still won't have answers. I'm trying to prepare myself for all of the possibilities. I know there isn't going to be a magic pill that makes me feel like a new person over night. I'm terrified of what diagnoses I might get. I know that's silly, but for some reason putting a label on the issue makes it that much more real. I'm even more terrified that I'll hear those dreaded words, "Everything looks fine." I doubt that will happen, but I've heard those words too many times. I think it's a weird experience for doctors when they give a patient what they view as good news and that patient bursts into tears. How can every test look fine when I feel so close to death?
OK, time to push those nasty thoughts back into the dark hole where they belong. I'm finally getting the help I so desperately need! Plus a little trip with my husband! And, it's my birthday week! Another year older, another year bolder! What a year it was! This time last year, I was announcing to the world that I was having another baby! Life does not get any better than that moment when you first hold your child! It sometimes amazes me when I think of how quickly life can change. I went from that amazing moment when my daughter was born in September, to honestly feeling like my body was shutting down in December. I spent Christmas Day praying and wondering if I would have to get a feeding tube. I hadn't been able to eat any solid food for weeks. I've come so far since that day. I have major setbacks (like this week), but it's still nowhere near where I was Christmas Day. I'm extremely hopeful that with some help, my body will get back to "my normal" in no time! Maybe I'll even feel better than I've felt in years. A girl can dream right?! This next year is going to be a good one. I have so many things to look forward to and I can't wait to see what 27 has in store for me! Hopefully more ups than downs!
"For whosoever shall call upon the name of the Lord shall be saved." Romans 10:13
Amy
Friday, March 22, 2013
I've Figured It Out!
The last couple of days have gone backwards for me. This strange pressure feeling in my head has become more intense, resulting in my ears ringing louder. It's not so much a sinus issue. It feels like I have too much fluid around my brain or something. Sometimes the pressure is behind my eyes, sometimes deep in my ears, sometimes at the base of my head, and sometimes in my forehead. It's uncomfortable to say the least. I also get some vertigo as the pressure builds. I've also been waking in the night with tachycardia. I'll be sound asleep and wake abruptly soaked in sweat and with a heart that's trying to escape my chest. I'm trying to push through and am convinced things will calm down again, rather than get worse.
These "down" times can be more difficult mentally than they are physically. I often start to ask God what he's trying to tell me. I'm a firm believer in the fact that we all go through experiences in life for a reason. There is a reason God decided I should live with a chronic illness. Well, yesterday I figured it out!
My life with a chronic illness would be perfect if I had a maid, cook, nanny, chauffeur, assistant, etc. God must be calling me to be a celebrity... or perhaps a princess. Definitely a princess. Gosh, I'm slow! All this time I thought it had to do with suffering on Earth to earn a lovelier place in Heaven. Nope! I was just born to be a princess! Ha! So, if anyone needs me, I'll be sitting on my Royal Couch with my Royal Coffee waiting for my Royal Entourage. They better get here fast, my house is a disaster!!
"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope." Jeremiah 29:11
Princess Amy
These "down" times can be more difficult mentally than they are physically. I often start to ask God what he's trying to tell me. I'm a firm believer in the fact that we all go through experiences in life for a reason. There is a reason God decided I should live with a chronic illness. Well, yesterday I figured it out!
My life with a chronic illness would be perfect if I had a maid, cook, nanny, chauffeur, assistant, etc. God must be calling me to be a celebrity... or perhaps a princess. Definitely a princess. Gosh, I'm slow! All this time I thought it had to do with suffering on Earth to earn a lovelier place in Heaven. Nope! I was just born to be a princess! Ha! So, if anyone needs me, I'll be sitting on my Royal Couch with my Royal Coffee waiting for my Royal Entourage. They better get here fast, my house is a disaster!!
"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope." Jeremiah 29:11
Princess Amy
Wednesday, March 20, 2013
The ABC's of PVC's...
Image from Wikipedia.
Everyone gets them at some point in their life. That yucky flip-flop feeling in your chest. I can only describe it as a sensation that your heart forgot to beat or maybe it decided to beat a little too hard. It's uncomfortable and can take your breath away or make you cough. If you're like me, it brings with it a little anxiety. Either there's a fish flopping around in my chest or I'm possibly having a heart attack and about to die.
These are called Premature Ventricular Contractions or PVC's. They occur when the lower portion of your heart begins to contract before it is completely filled with blood. Normally, the sinus node in your heart sends an electrical signal to tell the heart when to contract, but sometimes those lower chambers get a little anxious and decide to contract on their own too early. It's kind of like if the drummer in a band suddenly played a few beats really fast. It would throw off the rhythm of the entire band. The lower chambers contract too quickly and it disrupts the rhythm of the rest of the heart, causing the flip-flop sensation.
I get these quite frequently and I've gotten more used to them. Then I have days like Monday. I had six of these nasty things in one day. I'm sure there are people who've had more, but it started to make me rather panicky. I can handle one or two a week, but six in a day is a bit much. I was starting to get slightly worried that my "drummer" was really starting to act out and wanting to be a solo performer. I'd much rather he just stick to the band. He must have agreed because I haven't had one of these since.
On a side note, if you ever have six of these in one day you should probably go to the doctor. I know I sound like a hypocrite now and I'm sure I'll get some grief for not going. It was cold on Monday! Who wants to go out in the cold? OK, probably not funny but I am glad things seem to be back to normal now. I should add that nearly everyone experiences a PVC at some point in their life. For normal, healthy people they are nothing to worry about. Not dangerous at all, just uncomfortable. However, if you have a heart condition or experience flip-flops frequently, you should probably get it checked out. No worries, I plan on mentioning this to Dr. Goodman when I go to Mayo! Hopefully, my drummer behaves until then!
"When I am afraid, I will put my trust in Thee." Psalm 56:3
Amy
Monday, March 18, 2013
Medical History Bracelet
I posted a few days ago about my new Medical Alert bracelet and how much I love it! Well, here is my post I promised!! It's called the CARE medical history bracelet and its a USB and bracelet all in one! The bracelet is pictured to the right (I purchased the black bracelet). By the way, the picture to the right is from their website (where you can purchase a bracelet) www.medicalhistorybracelet.com. The bracelet is fool-proof. Plug it into your computer, open the file, and the program appears on your computer. I took some pictures of the program so you could see how easy it is to use (filled in with some personal info from a guy I like to call John Doe)!
My past bracelets, were ineffective because people would see "POTS patient" and still not know what my condition entails. It's a rare condition so it's amazing to now have the ability to store a ton of my medical information on one small bracelet (and easily change it, if needed). The picture to the right shows what a medical professional will see once they plug your USB into their computer. My bracelet actually has my picture on it so it appears under the "Medical History" heading.The picture to the left is a continued view of this page. Medical professionals also have the option to print this page.
OK, enough of me raving about this product! I am obviously in LOVE!! I also love that it is made out of a flexible, safe material that contains no latex! I've always had issues with past bracelets because I'm extremely sensitive to metals. Even bracelets claiming to be gold, could give me a rash! I've been wearing this bracelet for a week and no rash! Yay! So, go buy one! ;-) And no this company is not paying me, I just love their product this much! You can either order it from their website or find it in many stores. Here is a link to their Facebook page: http://www.facebook.com/MedicalHistoryBraceletbyCARE
OK, I've pounded it into your brains enough! I hope you all love this bracelet as much as I do!
"From the fullness of his grace we have all received one blessing after another." John 1:16
Have a great day!
Amy
Thursday, March 14, 2013
Sunshine and Blood-work...
Look out Arizona, I'll be there soon! The blood-work, pokes, and prods are just a small price I have to pay for a little sunshine and vacation time! I finally received my Mayo packet in the mail. Nothing super new or unexpected. I meet with Dr. Goodman bright and early on Monday morning for a consultation. In past appointments with him, he added more tests after this consultation. For anyone planning a trip to Mayo (especially if you are traveling a great distance), plan on being there for a week. It's not unusual for doctors to add more tests into your schedule. The only other thing he has planned right now is the full autonomic screening. Ugh! I was hoping I wouldn't have to repeat this, but I guess I'll suffer through. The packet wasn't specific about which tests are included in this screening but I'm assuming it will be similar to the screenings I've had in the past. The Tilt Table Test (hate this one, it makes me feel awful), the Sweat Test (tolerated this ok, just weird skin tingling sensation), the Stress Test (also not fun), and the test measuring adrenaline (not sure of its name but it involves lying in a dark room for about half an hour, having blood drawn, and then another blood draw after standing). I'm probably forgetting some tests. The last time I had them done was in 2008. I'm sure these tests will completely wipe me out and this really won't be a vacation at all, but I'm just looking forward to soaking in some sunshine and enjoying some quality alone-time with my hubby!
Here on the farm, it's feeling like spring! My favorite time of year! The snow is melting (it will freeze again next week), the new calves are being born, and the birds are chirping a little louder! I've started spring cleaning my house, which is quite the project for a POTSie! There's a lot of resting involved, but it's always satisfying looking at a room and knowing I've scrubbed every little corner! So long winter dust-bunnies and cobwebs! This time of year always gives me a new energy for life! Seeing all the calves running and playing in the pasture, soon my tulips will start peaking through the once-frozen ground, it's as if the entire farm is being re-born! Have I mentioned how much I love it? Ha Ha! So this Mayo appointment is coming at the perfect time for me! I'm energized and ready to battle for some answers! Now the trick is to keep this energy! I'm sure it will be waning by this afternoon! ;-)
"Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." Isaiah 40:28-31
I know that's kind of a long verse, but I think it was written just for us POTSies! How fitting! :-)
Amy
P.S.
I added a new Links page with links to some of my favorite pages, support groups, and blogs. It's a work in progress, but hopefully it will be helpful!
Here on the farm, it's feeling like spring! My favorite time of year! The snow is melting (it will freeze again next week), the new calves are being born, and the birds are chirping a little louder! I've started spring cleaning my house, which is quite the project for a POTSie! There's a lot of resting involved, but it's always satisfying looking at a room and knowing I've scrubbed every little corner! So long winter dust-bunnies and cobwebs! This time of year always gives me a new energy for life! Seeing all the calves running and playing in the pasture, soon my tulips will start peaking through the once-frozen ground, it's as if the entire farm is being re-born! Have I mentioned how much I love it? Ha Ha! So this Mayo appointment is coming at the perfect time for me! I'm energized and ready to battle for some answers! Now the trick is to keep this energy! I'm sure it will be waning by this afternoon! ;-)
"Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." Isaiah 40:28-31
I know that's kind of a long verse, but I think it was written just for us POTSies! How fitting! :-)
Amy
P.S.
I added a new Links page with links to some of my favorite pages, support groups, and blogs. It's a work in progress, but hopefully it will be helpful!
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