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
Friday, May 31, 2013
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
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