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
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