Well I haven't updated in quite awhile. I have been busy with school and not feeling 100% either. I have been experiencing several symptoms that I used to have from way back when, which is extremely frustrating!! A lot of my generalized muscular pain has lessened, but I have been experiencing much more:
- pin-point head and eye pains
- troubles with speaking, especially forming words into sentences and verbal expression (troubles saying what I want to say correctly and consistently)
- problems with short-term memory and remembering instructions (difficult to carry out a task that requires multiple steps)
- over-stimulation with sensory stimuli
- temperature over-sensitivity
- brain fogging!!!
- shortness of breath
These symptoms interfere with my everyday living. This is difficult for me to cope with because of the great impact it has. They affect my ability to complete my schoolwork and social life. Today is Christmas Day and everyone is at our house--grandparents, aunt, uncle, etc. The problem is that I am overwhelmed and very very fatigued. I cannot take part in the social experience of small talking with family members, or even sitting in the same room as everyone. I am exhausted by the time I get ready for everyone to come over (blow-drying my hair, putting on makeup, getting dressed, helping with last minute tasks), so this causes me to already hit my threshold. I am physically able to get ready, but that is too exhausting for my body that I cannot do anything afterwards. I become short-tempered, withdrawn/dazed, and sleepy. It feels as if I did not sleep at all for days and that everything around me is at a fast pace while I am stuck in slow motion.
Don't get me wrong, I am very fortunate to have such loving and supportive family and friends. I am also very lucky that I don't have to be stuck in a wheelchair or bedridden for the rest of my life. I can still do things. However, I feel as though I am stuck in someone else's body. I have the potential to do so much more than I am doing now, but I am held back by an uncooperative body. Sure, everyone has their own "disability". POTS is just my disability. I am hoping that with more research, more knowledge, and more help from my doctor in early January when I visit him again that I will feel better and be able to achieve more with each and every day. It is just extremely frustrating when I want to do something but I cannot. It will get better in time. I will have a Happy New Year once I see my doctor again :)
Sunday, December 25, 2011
Monday, November 28, 2011
November Updates
Well it has been another rough haul. I have been experiencing a lot more fatigue and weakness again. Lots of back and joint pain too. I have relied on my TENS unit on several occasions to get me through classes and social events. I do notice that my symptoms are revolved around the current weather trends (which are all over the place in the Midwest!!) and with stress. I will be going back up to see Dr. Fischer at the Mayo Clinic sometime in the next few months, so hopefully he can give me a reason why my symptoms are all over the place.
I have tried to increase my salt and fluid intake, talk to a counselor, exercise a bit more, rest more, but nothing is really helping my symptoms. It is frustrating because I was doing so well in the spring and summer months this year, but once fall hit, I experienced a lot more POTS symptoms again. In the spring and summer I was able to walk around for well over 4 hours and not get terribly fatigued. Now, I can't do that. I can only do the bare minimum with exercising--only walking to and from class and doing some squats right after I get out of bed.
It is frustrating but I have very supportive friends and family to help get me through the tough days. I hope all of you POTsies out there are as lucky as I am to have such a wonderful support system!
I have tried to increase my salt and fluid intake, talk to a counselor, exercise a bit more, rest more, but nothing is really helping my symptoms. It is frustrating because I was doing so well in the spring and summer months this year, but once fall hit, I experienced a lot more POTS symptoms again. In the spring and summer I was able to walk around for well over 4 hours and not get terribly fatigued. Now, I can't do that. I can only do the bare minimum with exercising--only walking to and from class and doing some squats right after I get out of bed.
It is frustrating but I have very supportive friends and family to help get me through the tough days. I hope all of you POTsies out there are as lucky as I am to have such a wonderful support system!
Tuesday, October 11, 2011
On a More Positive Note
I have experienced some good times along with the painful times since I've been at school again. I have been able to go to an apple orchard and pick apples, pick out pumpkins, go on an inflatable obstacle course, ride on a wagon ride, and go through a corn maze, not to mention cheering at home football games! So on a positive note, there are good times along with the bad. The good times are the ones I focus on the most because I don't want to be dragged down by the pains of P.O.T.S.! I work through them and have fun! Here are some pictures of my latest adventures...
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| As "Sara the Panther" at a home game! |
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| "Billy the Panther" carrying "Sara the Panther" |
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| At the orchard :) |
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| Right before entering the obstacle course |
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| At the pumpkin patch! We picked out 2 huge pumpkins and 1 smaller one too! |
Updates for October
Well so far this semester at school has been very interesting. I have really fun courses like Biological Psychology and Aging, which I enjoy! As for P.O.T.S., it has been a roller coaster! So many ups and downs with P.O.T.S. while I'm at school. I have been really fatigued since the start of this semester, which is normal due to the fact that I am doing a lot of things. I am involved in 4 clubs and have 5 classes to worry about. Anyone would be fatigued with the amount of work that I do...at least that's what I believe.
With this crazy weather changing from 90 degrees to 50 degrees overnight, I have been experiencing exaggerated symptoms. The fatigue is worse again and so is my back pain and brain fogging and shortness of breath. The brain fogging is at its worse over these last 4-5 weeks. I have been so brain fogged that my studies have been affected. I cannot concentrate on tasks that I need to get done, and I have fallen asleep in numerous classes too. This is something that I have never experienced before. I am one of the top students in all of my classes. I sleep roughly 7-9 hours every night. I shouldn't be falling asleep in class!
Also, when I do go to sleep, I cannot wake up in the mornings. I call it the "Sleeping Beauty" symptom. I cannot wake up even with 5 alarm clocks buzzing. My roommate has to shake me and yell my name for me to wake up at times. I get terrified sometimes when going to sleep because I don't want the "Sleeping Beauty" symptom to occur again. I have missed one class and almost missed an entire shift at work because I couldn't wake up. It is scary. I could understand if I wasn't getting enough sleep and then that occurred, but I am getting enough sleep!
Right now I just feel as though my body is improving in some aspects, but having more troubles in other areas. I am in recovery. It is not fun to NOT feel the improvements yet. I know that I have been feeling better as compared to the last few years. But I want to feel even better than I feel now. I know that day will come soon!
For now, my doctor says that I should drink Gatorade G2 in the mornings when I wake up and do some large muscle exercises like calf raises and bicep curls. He also said that I should exercise more consistently and reach a 30-minute time frame of continuous exercise. I have been working on that and have reached 15 minutes. I'm halfway there! It was also recommended that I check out a yoga class here at school since it is free and so that I can work on my blood flow. I should check out talking with a counselor too so that I can talk about the stresses of living with P.O.T.S. I am not thrilled about this last suggestion, but I am willing to do anything to make myself feel better, so I have an appointment set up for next Tuesday morning.
Until the next post, I will be smiling and laughing as always and improving my health with every step that I take! :)
With this crazy weather changing from 90 degrees to 50 degrees overnight, I have been experiencing exaggerated symptoms. The fatigue is worse again and so is my back pain and brain fogging and shortness of breath. The brain fogging is at its worse over these last 4-5 weeks. I have been so brain fogged that my studies have been affected. I cannot concentrate on tasks that I need to get done, and I have fallen asleep in numerous classes too. This is something that I have never experienced before. I am one of the top students in all of my classes. I sleep roughly 7-9 hours every night. I shouldn't be falling asleep in class!
Also, when I do go to sleep, I cannot wake up in the mornings. I call it the "Sleeping Beauty" symptom. I cannot wake up even with 5 alarm clocks buzzing. My roommate has to shake me and yell my name for me to wake up at times. I get terrified sometimes when going to sleep because I don't want the "Sleeping Beauty" symptom to occur again. I have missed one class and almost missed an entire shift at work because I couldn't wake up. It is scary. I could understand if I wasn't getting enough sleep and then that occurred, but I am getting enough sleep!
Right now I just feel as though my body is improving in some aspects, but having more troubles in other areas. I am in recovery. It is not fun to NOT feel the improvements yet. I know that I have been feeling better as compared to the last few years. But I want to feel even better than I feel now. I know that day will come soon!
For now, my doctor says that I should drink Gatorade G2 in the mornings when I wake up and do some large muscle exercises like calf raises and bicep curls. He also said that I should exercise more consistently and reach a 30-minute time frame of continuous exercise. I have been working on that and have reached 15 minutes. I'm halfway there! It was also recommended that I check out a yoga class here at school since it is free and so that I can work on my blood flow. I should check out talking with a counselor too so that I can talk about the stresses of living with P.O.T.S. I am not thrilled about this last suggestion, but I am willing to do anything to make myself feel better, so I have an appointment set up for next Tuesday morning.
Until the next post, I will be smiling and laughing as always and improving my health with every step that I take! :)
Monday, August 1, 2011
Other Girls With POTS
Check out a newspaper article at this site: http://www.pekintimes.com/features/x536831743/POTS-and-Jaclyn-One-girl-s-fight-against-the-invisible-illness?img=2
ABC News Video with a mother talking about her daughter's struggle with a diagnosis: http://abcnews.go.com/Health/video/girl-cured-from-mystery-pots-illness-11143304
ABC News Video with a mother talking about her daughter's struggle with a diagnosis: http://abcnews.go.com/Health/video/girl-cured-from-mystery-pots-illness-11143304
Updates for August
Well it has been a few weeks since I've updated. New news again...I'm slowly weaning off of another medication!! I am weaning off of the Relafen which is a pain medication to help with the muscle and joint pains that I experience. It has helped in the past but now that I am feeling better overall, I don't need to have all of these meds. I want to be feeling this great without my meds! That's the goal! I am just very surprised that I am off of so many of the medications I used to take. I am off of the Nadolol, Midodrine, and soon to be Relafen too.
It is so wonderful to be feeling pretty "normal" for a girl who has seen it all, experienced so much, and is finally able to fully enjoy life again. P.O.T.S. is a condition that did hold me back socially and physically, but not so much anymore! I am able to go out with friends, walk around town when it's so humid outside, play ping-pong competitively with my family, and shop too! I used to never be able to do that. I wasn't even able to walk the length of my house or go up a flight of stairs! I used to never to able to walk for more than a few minutes at the most, and now I am able to walk for hours outside when it's hot, humid, and in a loud atmosphere.
Handling all kinds of sensory things was a struggle for me in the past and it has been so much easier now. I used to get extremely overwhelmed. It felt as if I was delayed and the world was going by so fast. It felt like I was in molasses while everyone else was on the go. I don't feel that as much anymore. I don't feel like I'm held back anymore. I can handle loud noises, have a better reaction time when playing games, don't feel lost in complex situations, and I can physically do things I haven't been able to do since before 2005 when I started having symptoms.
I am lucky. I definitely realize that. Having my hospital bracelet collection reminds me of that every day. I was not sure if I was going to be able to outgrow P.O.T.S. I didn't know if I was going to be in a wheelchair for a good chunk of my life. I didn't know if the doctors would ever give me a promise of recovery. One thing I did know...I wasn't giving up! I wasn't going to sit back and let my condition hold me back. I tried my best to fit in and do things that other people were doing. I tried my best to enjoy every situation I was in and to truly make the most of it. I tried my best to work hard in order to recover.
Now I'm there. I am in recovery. I am not in a wheelchair or bedridden. I am extremely successful in college so far, and not stuck at home while my mom was to care for me like some doctors assumed would happen to me. I am getting stronger, faster, and more thankful each and every day. :)
It is so wonderful to be feeling pretty "normal" for a girl who has seen it all, experienced so much, and is finally able to fully enjoy life again. P.O.T.S. is a condition that did hold me back socially and physically, but not so much anymore! I am able to go out with friends, walk around town when it's so humid outside, play ping-pong competitively with my family, and shop too! I used to never be able to do that. I wasn't even able to walk the length of my house or go up a flight of stairs! I used to never to able to walk for more than a few minutes at the most, and now I am able to walk for hours outside when it's hot, humid, and in a loud atmosphere.
Handling all kinds of sensory things was a struggle for me in the past and it has been so much easier now. I used to get extremely overwhelmed. It felt as if I was delayed and the world was going by so fast. It felt like I was in molasses while everyone else was on the go. I don't feel that as much anymore. I don't feel like I'm held back anymore. I can handle loud noises, have a better reaction time when playing games, don't feel lost in complex situations, and I can physically do things I haven't been able to do since before 2005 when I started having symptoms.
I am lucky. I definitely realize that. Having my hospital bracelet collection reminds me of that every day. I was not sure if I was going to be able to outgrow P.O.T.S. I didn't know if I was going to be in a wheelchair for a good chunk of my life. I didn't know if the doctors would ever give me a promise of recovery. One thing I did know...I wasn't giving up! I wasn't going to sit back and let my condition hold me back. I tried my best to fit in and do things that other people were doing. I tried my best to enjoy every situation I was in and to truly make the most of it. I tried my best to work hard in order to recover.
Now I'm there. I am in recovery. I am not in a wheelchair or bedridden. I am extremely successful in college so far, and not stuck at home while my mom was to care for me like some doctors assumed would happen to me. I am getting stronger, faster, and more thankful each and every day. :)
Saturday, July 16, 2011
It is Frustrating
I am getting better. I know this for a fact. I can vacuum. I can drive. I can finally ride a bicycle! I haven't rode a bike since I first got symptoms of P.O.T.S. in fear that I would pass out or not be able to make it back home if I were to ride a good distance. I can do a lot now.
But my mind wants to do more. Go further. Push harder. But I know I can't do that just yet. I am so driven to push towards recovery, but I am not physically strong enough to do things that I want to do. That's incredibly difficult to handle. It's not like I'm depressed or terribly upset, but it sometimes makes me frustrated because my body does not cooperate with my determination! I'm feeling better and better each day so I get impatient. I want to continue to feel better but in less time! I want to be normal again. I know that is the goal of every person with a chronic condition also, just to feel better and feel a sense of normalcy.
I am extremely lucky. I have a diagnosis. I have a bright prognosis. I am starting recovery. I have such a wonderful support system of my family, boyfriend, and friends. I am lucky. I just have to realize that becoming "normal" again does take some time. If I continue pushing myself as I am doing now, I will feel even better in a faster time. So that is my hope! I am strong, and I will become stronger :)
But my mind wants to do more. Go further. Push harder. But I know I can't do that just yet. I am so driven to push towards recovery, but I am not physically strong enough to do things that I want to do. That's incredibly difficult to handle. It's not like I'm depressed or terribly upset, but it sometimes makes me frustrated because my body does not cooperate with my determination! I'm feeling better and better each day so I get impatient. I want to continue to feel better but in less time! I want to be normal again. I know that is the goal of every person with a chronic condition also, just to feel better and feel a sense of normalcy.
I am extremely lucky. I have a diagnosis. I have a bright prognosis. I am starting recovery. I have such a wonderful support system of my family, boyfriend, and friends. I am lucky. I just have to realize that becoming "normal" again does take some time. If I continue pushing myself as I am doing now, I will feel even better in a faster time. So that is my hope! I am strong, and I will become stronger :)
Sunday, July 3, 2011
RIP Meds
Today is day 2 of not having the Midodrine!! And I'm doing very well!
Yesterday I stopped taking it and I was able to vacuum 2 levels of my house! Including the stairs!!! It is amazing to me what I am now able to do. I really don't see a huge difference in having the Midodrine and not. It surprises me because I have been on the medication for well over 2 years or so and it has helped me dramatically in the past. Now that my POTS is getting better, I guess there's no need to take it and my body is working well on its own!
Besides the Midodrine, over the years I have taken and can also say Rest in Peace to since I've stopped taking these a long while ago:
-Ambien (for sleep)
-Amitriptyline (for pain)
-Celebrex (for pain)
-Diamox (to decrease eye pressure)
-Fludrocortisone (help treat cerebral salt wasting)
-Indomethacin (for pain)
-Melatonin (for sleep)
-Mestinon (decrease muscle weakness; also for myasthenia gravis treatment when doctors thought I had MG)
-Metoprolol (treat high blood pressure)
-Nadolol (increase blood flow)
-Neurontin (for pain)
-Norco (for severe pain)
-Thermotabs (salt tablets)
-Tylenol 3 (for severe pain)
For the POTsies out there like me, the ones on this list that have helped the most are: Nadolol, Thermotabs (if you don't like eating a lot of salt and would rather take a tablet of it), Midodrine (the life saver of a POTsie), and Fludrocortisone.
I only have a few more to add to this list one day. I'm still taking Provigil (helps with the loss of energy with POTS), Lyrica (helps with pain), Relafen (helps with pain), and iron supplements.
Much love to everyone out there on this wonderful holiday! Have a fantastic weekend!
And to all you POTsies, I wish for you to have an "RIP meds" list of your own very very soon too! Just know there is always hope! There is always a light at the end of the tunnel no matter how dark it may seem now. Leave a comment or e-mail me at sduncan36@gmail.com. I'm always here with an answer and a smile! :)
Yesterday I stopped taking it and I was able to vacuum 2 levels of my house! Including the stairs!!! It is amazing to me what I am now able to do. I really don't see a huge difference in having the Midodrine and not. It surprises me because I have been on the medication for well over 2 years or so and it has helped me dramatically in the past. Now that my POTS is getting better, I guess there's no need to take it and my body is working well on its own!
Besides the Midodrine, over the years I have taken and can also say Rest in Peace to since I've stopped taking these a long while ago:
-Ambien (for sleep)
-Amitriptyline (for pain)
-Celebrex (for pain)
-Diamox (to decrease eye pressure)
-Fludrocortisone (help treat cerebral salt wasting)
-Indomethacin (for pain)
-Melatonin (for sleep)
-Mestinon (decrease muscle weakness; also for myasthenia gravis treatment when doctors thought I had MG)
-Metoprolol (treat high blood pressure)
-Nadolol (increase blood flow)
-Neurontin (for pain)
-Norco (for severe pain)
-Thermotabs (salt tablets)
-Tylenol 3 (for severe pain)
For the POTsies out there like me, the ones on this list that have helped the most are: Nadolol, Thermotabs (if you don't like eating a lot of salt and would rather take a tablet of it), Midodrine (the life saver of a POTsie), and Fludrocortisone.
I only have a few more to add to this list one day. I'm still taking Provigil (helps with the loss of energy with POTS), Lyrica (helps with pain), Relafen (helps with pain), and iron supplements.
Much love to everyone out there on this wonderful holiday! Have a fantastic weekend!
And to all you POTsies, I wish for you to have an "RIP meds" list of your own very very soon too! Just know there is always hope! There is always a light at the end of the tunnel no matter how dark it may seem now. Leave a comment or e-mail me at sduncan36@gmail.com. I'm always here with an answer and a smile! :)
Sunday, June 26, 2011
No More Beta Blockers!
Well it has been a few weeks since I've been at Mayo and I have already stopped taking Nadolol, which is a beta-blocker. It helps to control my heart and such. I couldn't take that medication when I had my tilt-table test done at Mayo and when I saw my doctor, he said I don't need to take it ever again :) And I don't see much of a change. Occasionally I am more fatigued or have random heart palpitations, but nowhere near what I had expected would happen without having the medication.
Now that I'm off of the Nadolol, I am in the process of weaning off of the Midodrine. This medication has been very effective in the past so I was nervous when my doctor said this was the next medication to get off of. It has been over a week now that I have cut the dose in half. I used to take 10 mg three times a day. Now I am only taking 5 mg. I do feel a little different, but nothing drastic. I do feel fatigued at times. I do get some brain fogging sometimes too. But I am very functional. I can do so much. I never would have expected to be able to do the things I am doing. I was able to go clothes shopping the day I cut the dose in half. I was able to play ping-pong with my family for well over a half hour on several days this week. I can even drive! It is amazing to me that my body truly is recovering. I don't need to take so many medications anymore. I'm just so lucky!!
Now that I'm off of the Nadolol, I am in the process of weaning off of the Midodrine. This medication has been very effective in the past so I was nervous when my doctor said this was the next medication to get off of. It has been over a week now that I have cut the dose in half. I used to take 10 mg three times a day. Now I am only taking 5 mg. I do feel a little different, but nothing drastic. I do feel fatigued at times. I do get some brain fogging sometimes too. But I am very functional. I can do so much. I never would have expected to be able to do the things I am doing. I was able to go clothes shopping the day I cut the dose in half. I was able to play ping-pong with my family for well over a half hour on several days this week. I can even drive! It is amazing to me that my body truly is recovering. I don't need to take so many medications anymore. I'm just so lucky!!
Sunday, June 19, 2011
The Good. The Bad. The Ugly.
Well let's start with the bad and the ugly and then work our way to the happier things!
POTS poses many challenges: from not being understood by friends, classmates, and family, to the amount of physical difficulties endured. Most youth with POTS tend to be highly intelligent and fit the stereotype as high achievers. Living with a medical condition is stressful and difficult. It took time to adapt to all of the changes that went on with my body because of POTS. Being an over-achiever doesn't help this though. I wanted to be the best I could possibly be. I wanted to succeed in everything that I did. I just wished for some energy so I could get that "A" in class. I dreamed of becoming the best musician in my school's band and becoming a star athlete.
It was incredibly hard to adapt to my body's changes when I was so young because I didn't understand what exactly was going on and everyone else seemed to know what was best for me. I felt that I had no control over my own life. This is difficult still too even though I'm 20 now. Symptoms came and went, and varied dramatically in severity. I had to overcome many symptoms just to get out of bed in the mornings and force my body to move. I was lightheaded, was near fainting every time I attempted to stand up or wait in line, extreme fatigue, had heart palpitations, tremulousness, chest discomfort, generalized weakness and muscle pains, tight joints, shortness of breath, excessive sweating, blood pooling in my limbs, intolerance to heat, humidity, and temperature changes, cognitive impairment, dizziness, tachycardia (fast heart rate), chills, noise and light sensitivity, was easily over-stimulated, had numbness in my feet and legs, irregular menstrual cycles, loss of appetite, chemical sensitivities, bloating after eating meals, headaches, blurred vision, dysfunction of pupil contraction/dilation, disorientation, exercise intolerance, brain fogging, pressure behind the eye, and impaired concentration.
This made it extremely difficult to have a social life. Since POTS usually affects teens and young adults, like myself, it was especially difficult since these are the most important years to have a social life. I wasn't able to attend events anymore. I was not able to enjoy time with my friends and family because I was too exhausted.
I had been really active before the onset of POTS. I was a cross-country runner, played in the honors band at school, and took a few honors courses. I definitely fell under the description of an over-achiever. I was the teacher's pet of most of my classes as my classmates would say. Then when I was about 14, a freshman in high school, I started to feel pains in my feet that continued to travel upwards until my entire body was in extreme pain and I couldn't do anything about it. No longer could I do those things my life once revolved around. I was too exhausted to even complete some of my homework assignments. This dramatic change was difficult for me to accept and confusing to everyone around me. This is the bad and the ugly. It's very difficult and you feel as though you are walking up a mountain carrying an elephant. Every activity is challenging. I had to give up a lot that I loved, but I did gain some things too.
I gained an understanding of what it's really like to be bedridden, be stuck in a wheelchair, feel intense pain that I would imagine arthritis patients or fibromyalgia patients suffer from, be too exhausted to do things, feel as though the world is now against me, and feel as though I'm not worth it. Everything changed so dramatically and everything was so sudden. One day I was perfectly healthy and the next I had such a struggle physically pulling myself out of bed. I can understand what it's like for other patients and how they must feel. I gained a compassion and I learned to accept help from others. I learned to let my body do its own thing and I will catch up with everyone later. I learned to listen to my body even though I didn't want to. I learned more about anatomy, the medical field in general, and everything there is to know about insurance companies!! Ha Ha!!
I also learned that through humor I can overcome anything. Having that positive attitude and the hope that there will be a day when I get better motivated me every day. Having that high achieving mindset motivated me to keep going and force my body to do things like walking even when I was in such horrible pain and I was so dizzy. This is what helped in my recovery. Because of the things I learned and the motivation I had, I am now recovering from POTS. It may still be another 1 or 2 years until I'm truly better, but at least I can see the light at the end of the tunnel now! There may be plenty of ugly days, but the things I have gained through having a medical condition will forever be a part of me! :)
POTS poses many challenges: from not being understood by friends, classmates, and family, to the amount of physical difficulties endured. Most youth with POTS tend to be highly intelligent and fit the stereotype as high achievers. Living with a medical condition is stressful and difficult. It took time to adapt to all of the changes that went on with my body because of POTS. Being an over-achiever doesn't help this though. I wanted to be the best I could possibly be. I wanted to succeed in everything that I did. I just wished for some energy so I could get that "A" in class. I dreamed of becoming the best musician in my school's band and becoming a star athlete.
It was incredibly hard to adapt to my body's changes when I was so young because I didn't understand what exactly was going on and everyone else seemed to know what was best for me. I felt that I had no control over my own life. This is difficult still too even though I'm 20 now. Symptoms came and went, and varied dramatically in severity. I had to overcome many symptoms just to get out of bed in the mornings and force my body to move. I was lightheaded, was near fainting every time I attempted to stand up or wait in line, extreme fatigue, had heart palpitations, tremulousness, chest discomfort, generalized weakness and muscle pains, tight joints, shortness of breath, excessive sweating, blood pooling in my limbs, intolerance to heat, humidity, and temperature changes, cognitive impairment, dizziness, tachycardia (fast heart rate), chills, noise and light sensitivity, was easily over-stimulated, had numbness in my feet and legs, irregular menstrual cycles, loss of appetite, chemical sensitivities, bloating after eating meals, headaches, blurred vision, dysfunction of pupil contraction/dilation, disorientation, exercise intolerance, brain fogging, pressure behind the eye, and impaired concentration.
This made it extremely difficult to have a social life. Since POTS usually affects teens and young adults, like myself, it was especially difficult since these are the most important years to have a social life. I wasn't able to attend events anymore. I was not able to enjoy time with my friends and family because I was too exhausted.
I had been really active before the onset of POTS. I was a cross-country runner, played in the honors band at school, and took a few honors courses. I definitely fell under the description of an over-achiever. I was the teacher's pet of most of my classes as my classmates would say. Then when I was about 14, a freshman in high school, I started to feel pains in my feet that continued to travel upwards until my entire body was in extreme pain and I couldn't do anything about it. No longer could I do those things my life once revolved around. I was too exhausted to even complete some of my homework assignments. This dramatic change was difficult for me to accept and confusing to everyone around me. This is the bad and the ugly. It's very difficult and you feel as though you are walking up a mountain carrying an elephant. Every activity is challenging. I had to give up a lot that I loved, but I did gain some things too.
I gained an understanding of what it's really like to be bedridden, be stuck in a wheelchair, feel intense pain that I would imagine arthritis patients or fibromyalgia patients suffer from, be too exhausted to do things, feel as though the world is now against me, and feel as though I'm not worth it. Everything changed so dramatically and everything was so sudden. One day I was perfectly healthy and the next I had such a struggle physically pulling myself out of bed. I can understand what it's like for other patients and how they must feel. I gained a compassion and I learned to accept help from others. I learned to let my body do its own thing and I will catch up with everyone later. I learned to listen to my body even though I didn't want to. I learned more about anatomy, the medical field in general, and everything there is to know about insurance companies!! Ha Ha!!
I also learned that through humor I can overcome anything. Having that positive attitude and the hope that there will be a day when I get better motivated me every day. Having that high achieving mindset motivated me to keep going and force my body to do things like walking even when I was in such horrible pain and I was so dizzy. This is what helped in my recovery. Because of the things I learned and the motivation I had, I am now recovering from POTS. It may still be another 1 or 2 years until I'm truly better, but at least I can see the light at the end of the tunnel now! There may be plenty of ugly days, but the things I have gained through having a medical condition will forever be a part of me! :)
Wednesday, June 8, 2011
Monday, June 6, 2011
Mayo Trip Part 2
I'm still at Mayo, but we're going home tomorrow which is really nice. I had my tilt-table test done this morning. That wasn't so fun. I was really tired in the morning and I was slow moving. For the tilt-table test, you lie down on a table that has the capability to move from a horizontal position to vertical position. The tilt-table test has a few parts to it: the part where they tilt your bed so you're practically standing up and monitor your heart rate and blood pressure, the part where you have to exhale into a plastic tube in order to monitor lung capacity, and the part where they stimulate your sweat glands on some areas of your body.
Since I was tired and did not have my important POTS meds because they would affect the results of the test, I was not comfortable. Breathing into the tube was incredibly difficult and I felt like I was stuck underwater without any oxygen. I felt like I was going to pass out when they tilted my bed too. This was discouraging because I thought I would feel better during the test. I felt so awful during the test though. My mom saw what my numbers for my heart rate and blood pressure were though during the whole test. She thought I had improved.
When I saw Dr. Fischer, he said yes I am improving! He said my tilt-table test results were almost normal for a non-POTS person. My heart rate only increased 19 beats per minute as compared to about 50 beats per minute from my 2008 test!! So that means that my body is clinically improving! I may not be feeling quite where I want to be feeling, but my body is improving.
Dr. Fischer and I have an action plan that starts off with me not taking Nadolol (heart medication) ever again and see how my body reacts to that. Then, I will try to wean off of Midodrine (POTS medication) since my body is improving and is no longer needing the medication necessarily. He also said that within 1 or 2 years I may not have POTS anymore!! My body is improving so much that I may not experience anymore POTS symptoms next year! I'm definitely hoping for that!
I'll keep you all updated with my progress. Until next time :)
P.S. This fantastic news is also special because today is the Day of Visibility for POTS and other conditions. So to find out that I am recovering is so special on Day of Visibility :)
Since I was tired and did not have my important POTS meds because they would affect the results of the test, I was not comfortable. Breathing into the tube was incredibly difficult and I felt like I was stuck underwater without any oxygen. I felt like I was going to pass out when they tilted my bed too. This was discouraging because I thought I would feel better during the test. I felt so awful during the test though. My mom saw what my numbers for my heart rate and blood pressure were though during the whole test. She thought I had improved.
When I saw Dr. Fischer, he said yes I am improving! He said my tilt-table test results were almost normal for a non-POTS person. My heart rate only increased 19 beats per minute as compared to about 50 beats per minute from my 2008 test!! So that means that my body is clinically improving! I may not be feeling quite where I want to be feeling, but my body is improving.
Dr. Fischer and I have an action plan that starts off with me not taking Nadolol (heart medication) ever again and see how my body reacts to that. Then, I will try to wean off of Midodrine (POTS medication) since my body is improving and is no longer needing the medication necessarily. He also said that within 1 or 2 years I may not have POTS anymore!! My body is improving so much that I may not experience anymore POTS symptoms next year! I'm definitely hoping for that!
I'll keep you all updated with my progress. Until next time :)
P.S. This fantastic news is also special because today is the Day of Visibility for POTS and other conditions. So to find out that I am recovering is so special on Day of Visibility :)
Sunday, June 5, 2011
Mayo Trip Part 1
Well, along with my mom, I'm at the Mayo Clinic in Rochester, MN right now. I'm laying in this really nice comfy bed with my laptop on my lap and I'm just exhausted. We just got back from eating dinner at Olive Garden. Don't get me wrong, I love Olive Garden's food, but all that I wanted all day was sleep. Yesterday evening we arrived here in Rochester. I had to stop taking my Midodrine and Nadolol (2 POTS medications) yesterday because I will be having another tilt-table test done tomorrow morning. The meds help to counter some of my POTS symptoms, so now I'm not getting enough oxygen. And this leaves me super fatigued and sleepy.
It is difficult to carry out conversations because my words do not come out easily. I can't form my words or get my ideas across. My mom is constantly asking me to repeat myself because she doesn't understand what I'm saying, which takes even more energy out of me. It is frustrating. I have to focus a lot on my breathing so that I can get as much oxygen in my system as I can. I am experiencing a little more tremulousness than normal, which is expected also because this is another POTS symptom. Headaches and brain fogging are more prominent now too.
I'm toughing it out as much as I can. It's just very hard to have these symptoms that I haven't experienced in a long time. I haven't had very many headaches or days when I just can't physically do anything. I feel like a ragdoll because I just can't do anything and I'm so weak. Such a difference from yesterday or this morning because I was able to walk around for almost 3 hours just window shopping with my mom. We walked at a very slow pace, but I was still able to be on my feet for that long in the morning! Afterwards, though, we came back to the room and I felt exhausted as if I just ran 3 marathon races. I wanted so badly to go to sleep, but I knew I would be asleep for the rest of the day if I fell asleep! Ha ha! So since about 3 in the afternoon my energy level has plummeted. I'm running on empty and it's not even 9 o'clock!
Oh well...another busy day tomorrow so that's why I am splitting this post into 2 parts. Mayo Trip Part 1 was today. I'm always hoping for a better tomorrow whether I'm at Mayo or not :)
It is difficult to carry out conversations because my words do not come out easily. I can't form my words or get my ideas across. My mom is constantly asking me to repeat myself because she doesn't understand what I'm saying, which takes even more energy out of me. It is frustrating. I have to focus a lot on my breathing so that I can get as much oxygen in my system as I can. I am experiencing a little more tremulousness than normal, which is expected also because this is another POTS symptom. Headaches and brain fogging are more prominent now too.
I'm toughing it out as much as I can. It's just very hard to have these symptoms that I haven't experienced in a long time. I haven't had very many headaches or days when I just can't physically do anything. I feel like a ragdoll because I just can't do anything and I'm so weak. Such a difference from yesterday or this morning because I was able to walk around for almost 3 hours just window shopping with my mom. We walked at a very slow pace, but I was still able to be on my feet for that long in the morning! Afterwards, though, we came back to the room and I felt exhausted as if I just ran 3 marathon races. I wanted so badly to go to sleep, but I knew I would be asleep for the rest of the day if I fell asleep! Ha ha! So since about 3 in the afternoon my energy level has plummeted. I'm running on empty and it's not even 9 o'clock!
Oh well...another busy day tomorrow so that's why I am splitting this post into 2 parts. Mayo Trip Part 1 was today. I'm always hoping for a better tomorrow whether I'm at Mayo or not :)
Tuesday, May 31, 2011
Having POTS makes me feel like I'm 90 years old
If I were to describe what POTS does to me, without you knowing that I graduated from high school within the last 5 years, you might come to the conclusion that I am an elderly woman...
This is because:
- I forget what day it is. I forget names and places. I repeat the same story over and over again. And, I forget where I parked the car.
- I practically live at the doctors. The doctors and nurses know me by name without looking at my chart. Even some of the other staff recognize me. There was a point in time when I was going to get blood work and other tests done so often that I saw the same faces in the waiting room time and time again.
- I have a medication tote, not a box or a container, because I have to take so many medications. I have a dose box that has the days of the week spelled out and has separate boxes for the morning, afternoon, evening, and night.
- It takes me a lot while to get out of bed in the mornings and I can't do strenuous activities because of joint and muscle pains and I become winded easily.
- I have very weak muscles and have been to physical therapy to strengthen my muscles and joints. I had also done physical therapy activities in the warm and shallow pool when older ladies had their water aerobics class.
- I do not have a strong immune system so I have to get the flu shot every year.
- I own compression socks and have worn them countless times. Not exactly the hottest style, but it did give me some relief in the past.
**Please excuse my silliness if I offended anyone with this post. My only intention is to help people understand the effects of POTS.**
This is because:
- I forget what day it is. I forget names and places. I repeat the same story over and over again. And, I forget where I parked the car.
- I practically live at the doctors. The doctors and nurses know me by name without looking at my chart. Even some of the other staff recognize me. There was a point in time when I was going to get blood work and other tests done so often that I saw the same faces in the waiting room time and time again.
- I have a medication tote, not a box or a container, because I have to take so many medications. I have a dose box that has the days of the week spelled out and has separate boxes for the morning, afternoon, evening, and night.
- It takes me a lot while to get out of bed in the mornings and I can't do strenuous activities because of joint and muscle pains and I become winded easily.
- I have very weak muscles and have been to physical therapy to strengthen my muscles and joints. I had also done physical therapy activities in the warm and shallow pool when older ladies had their water aerobics class.
- I do not have a strong immune system so I have to get the flu shot every year.
- I own compression socks and have worn them countless times. Not exactly the hottest style, but it did give me some relief in the past.
**Please excuse my silliness if I offended anyone with this post. My only intention is to help people understand the effects of POTS.**
Hot Weather and POTS
It's summer. It gets really hot outside. Sometimes very humid. Since POTS mainly has to do with the body's inability to open and close its blood vessels like it should, hot weather makes it even more difficult. When it's hot and humid outside, a normal person's blood vessels relax a little more than usual. On the other hand, when it's cold outside, a normal person's blood vessels close a little more than usual to move the blood fast in the body.
Well, with POTS, my blood vessels are already too "relaxed" so they are even worse with the hot weather. This makes it difficult for the blood to come back up from my extremities, meaning there is pooling of blood in my extremities and not enough blood getting to my muscles and my brain. This can cause more pains throughout my body where there is a lack of blood. My body is screaming to have the blood, so this is the cause of the pain. I get headaches and can get very dizzy/lightheaded and experience a lot of brain fogginess because my brain doesn't have enough blood either.
Every symptom I experience is exaggerated with the hot weather, especially when it's really humid outside. I take a lot of deep breaths because my body needs more oxygen in the brain. This is a natural thing your body does on a normal basis, just as if you were to yawn when your body craves more oxygen. If I focus more on my breathing and take it easy during the days when it is very hot and humid, I have found that this can help, but it doesn't take away my symptoms completely.
It is especially hard to exercise even in the slightest of amounts on these days also because your muscles don't have the blood. Joint pains can be tremendous because of the humidity too. It's never a good combination! Ha ha! But I still have to do some sort of activity even when I don't feel well at all. Even if I am stuck in bed because I am too dizzy to stand up, I have to push myself to get out of bed.
I have to ask for help to stand up and walk around. I have to be supervised on these days, which is difficult for my family at times. I have to rely on my mom a lot to help me make meals, clothe myself, and drive me places. I carry my cell phone around with me everywhere I go just in case I feel too dizzy to take a shower or dry my hair with the blow dryer, for instance.
Living with POTS makes a person very cautious of what they do and not do, even when it comes to the everyday sort of activities/chores. I know I'm not going to vacuum my bedroom on a hot day or else I will pass out. I know I should not take a hot/warm shower or even being in the shower for a long time on hot days because I will pass out.
I know my limitations. It has taken me several years to figure out the best plan for everyday living on hot, humid days and on cool days too. It requires a lot of patience, a lot of guess work, a lot of planning, and a lot of help and understanding from family members. Hot weather makes POTS symptoms incredibly life-altering because you literally have to change around your normal routines when it is too hot for your body to handle.
It would be nice to live in Florida where it is sunny so often or in South Carolina where there are so many beautiful beaches to go to. However, to help with my POTS symptoms, I'll have to continue living where I'm at for now.
One day I know POTS will either be cured or there will be a treatment available for all POTS patients. Until then, good luck to you all in this crazy summer season!
Well, with POTS, my blood vessels are already too "relaxed" so they are even worse with the hot weather. This makes it difficult for the blood to come back up from my extremities, meaning there is pooling of blood in my extremities and not enough blood getting to my muscles and my brain. This can cause more pains throughout my body where there is a lack of blood. My body is screaming to have the blood, so this is the cause of the pain. I get headaches and can get very dizzy/lightheaded and experience a lot of brain fogginess because my brain doesn't have enough blood either.
Every symptom I experience is exaggerated with the hot weather, especially when it's really humid outside. I take a lot of deep breaths because my body needs more oxygen in the brain. This is a natural thing your body does on a normal basis, just as if you were to yawn when your body craves more oxygen. If I focus more on my breathing and take it easy during the days when it is very hot and humid, I have found that this can help, but it doesn't take away my symptoms completely.
It is especially hard to exercise even in the slightest of amounts on these days also because your muscles don't have the blood. Joint pains can be tremendous because of the humidity too. It's never a good combination! Ha ha! But I still have to do some sort of activity even when I don't feel well at all. Even if I am stuck in bed because I am too dizzy to stand up, I have to push myself to get out of bed.
I have to ask for help to stand up and walk around. I have to be supervised on these days, which is difficult for my family at times. I have to rely on my mom a lot to help me make meals, clothe myself, and drive me places. I carry my cell phone around with me everywhere I go just in case I feel too dizzy to take a shower or dry my hair with the blow dryer, for instance.
Living with POTS makes a person very cautious of what they do and not do, even when it comes to the everyday sort of activities/chores. I know I'm not going to vacuum my bedroom on a hot day or else I will pass out. I know I should not take a hot/warm shower or even being in the shower for a long time on hot days because I will pass out.
I know my limitations. It has taken me several years to figure out the best plan for everyday living on hot, humid days and on cool days too. It requires a lot of patience, a lot of guess work, a lot of planning, and a lot of help and understanding from family members. Hot weather makes POTS symptoms incredibly life-altering because you literally have to change around your normal routines when it is too hot for your body to handle.
It would be nice to live in Florida where it is sunny so often or in South Carolina where there are so many beautiful beaches to go to. However, to help with my POTS symptoms, I'll have to continue living where I'm at for now.
One day I know POTS will either be cured or there will be a treatment available for all POTS patients. Until then, good luck to you all in this crazy summer season!
Sunday, May 29, 2011
The Dysautonomia Aspect of POTS
POTS falls under the umbrella of Dysautonomia. Let's just break this down here. Dys-auto-nomia. It means dysfunction of the autonomic nervous system (ANS). We don't have to worry about making our heart beat or our lungs breathe. We don't have to concentrate on that because these functions are automatic. So, the autonomic nervous system is like an autopilot for our bodies. It makes changes within our bodies to keep us functioning. It controls our heart rate, blood pressure, breathing, body temperature, digestion, the way our pupils react to light, and so much more.
When our ANS fails or malfunctions, this is called Dysautonomia. POTS is like a subgroup underneath Dysautonomia. Other conditions include: inappropriate sinus tachycardia (IST), vasovagal syncope, mitral valve prolapse dysautonomia, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), and others.
Many doctors are unaware of Dysautonomia. It is notoriously hard to diagnose because of the fact that the symptoms of the condition are vague, sometimes unusual, and can mimic other medical conditions. Most patients are told that "it's all in your head" or it's depression or anxiety. Dysautonomia is real though. It can make life pretty difficult too.
If you look at all of the functions the ANS does for your body, you can truly realize how many things could go wrong. Not being able to control a malfunctioning autopilot is a scary idea to thing about. The worst part of it all is that Dysautonomia is unpredictable. This is what makes POTS symptoms unpredictable too. One day you can do something, and then the next you can't. One day you're experiencing heart palpitations and dizziness, the next you can't control your body temperature or you're near passing out. Some days it's a little better. Some days it's a lot better. While other times it's worse. This is the frustrating part.
It is extremely difficult when you go from being a fully functioning member of society to someone who can't get out of bed in the mornings. This is because Dysautonomia takes away your independence. It's even harder when others do not understand what you are going through. Yes I would love to go to the movies or spend the day going clothes shopping. I would even love to be able to go visit people that I love without worrying about whether I'll be able to drive home.
Sometimes I can manage, but sometimes I can't. I may have to cancel things at the last minute or need to leave early from an event. Sometimes I can do these things, but no one can truly realize the aftermath of the things and events that I can do. I may not be able to string a sentence together, stand or walk in a straight line, or I may need to sleep for a week to recoup after doing simple things like drive, go shopping, or hang out with friends for the day.
I do not want your pity. All that I ask is a little bit of understanding. With June 6th coming up, Invisible Illnesses need to be heard. All that I want you to gain is a realization that Dysautonomia and POTS do exist and they make life a challenge. Dysautonomia-- Say it. Remember it. Spread awareness.
When our ANS fails or malfunctions, this is called Dysautonomia. POTS is like a subgroup underneath Dysautonomia. Other conditions include: inappropriate sinus tachycardia (IST), vasovagal syncope, mitral valve prolapse dysautonomia, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), and others.
Many doctors are unaware of Dysautonomia. It is notoriously hard to diagnose because of the fact that the symptoms of the condition are vague, sometimes unusual, and can mimic other medical conditions. Most patients are told that "it's all in your head" or it's depression or anxiety. Dysautonomia is real though. It can make life pretty difficult too.
If you look at all of the functions the ANS does for your body, you can truly realize how many things could go wrong. Not being able to control a malfunctioning autopilot is a scary idea to thing about. The worst part of it all is that Dysautonomia is unpredictable. This is what makes POTS symptoms unpredictable too. One day you can do something, and then the next you can't. One day you're experiencing heart palpitations and dizziness, the next you can't control your body temperature or you're near passing out. Some days it's a little better. Some days it's a lot better. While other times it's worse. This is the frustrating part.
It is extremely difficult when you go from being a fully functioning member of society to someone who can't get out of bed in the mornings. This is because Dysautonomia takes away your independence. It's even harder when others do not understand what you are going through. Yes I would love to go to the movies or spend the day going clothes shopping. I would even love to be able to go visit people that I love without worrying about whether I'll be able to drive home.
Sometimes I can manage, but sometimes I can't. I may have to cancel things at the last minute or need to leave early from an event. Sometimes I can do these things, but no one can truly realize the aftermath of the things and events that I can do. I may not be able to string a sentence together, stand or walk in a straight line, or I may need to sleep for a week to recoup after doing simple things like drive, go shopping, or hang out with friends for the day.
I do not want your pity. All that I ask is a little bit of understanding. With June 6th coming up, Invisible Illnesses need to be heard. All that I want you to gain is a realization that Dysautonomia and POTS do exist and they make life a challenge. Dysautonomia-- Say it. Remember it. Spread awareness.
Friday, May 27, 2011
Finding Out Who Your True Friends Are
The experience of an illness is a time when people usually find out who their true friends are. Sometimes the extra stress of an illness can break a friendship. But sometimes the illness brings people closer. Maintaining friendships despite the undeniable difficulties faced by the impact of the illness is a tough feat. Illness takes a huge toll on any relationship whether a friendship, romance, or family bond. How people respond to it all defines their character and defines the strength of the friendship. A faithful friend, though, is the medicine of life. I always say that laughter is the most effective (and cheapest!) medication available to every single person. However, you need to share the laughter with others. That's when friends step in.
Friends support each other. You go to functions together. Share memories together. My friends and I would have lunch together and play in the school band together. We would have sleepovers and go bowling too. When I began to experience the first symptoms of POTS in 2005, my friends didn't understand at all. I suddenly missed lunches at school because of doctors' appointments. I began to not feel well so I would go to the nurse's office. I would not join them in sleepover nights when I was too exhausted to pull an all-nighter with them. I wanted to do the things I used to do with my friends. My body just wasn't on the same page as my mind.
My friends didn't understand because I didn't understand what was going on. I couldn't convey to them the pains I was feeling because I didn't know why I was in such pain. They thought I was making up my symptoms just so that I would have an excuse to not hang out with them. This was difficult especially when I needed their support at that time. My symptoms were complicated and were "invisible". I didn't have a broken leg or anything physically obvious going on. My symptoms were all internal. My autonomic nervous system was dysfunctional (dysautonomia) so my heart rate, blood pressure, respiration, digestion, blood vessel dilation and constriction, sensory regulation, and body temperature were all dysfunctional. These are not obvious to normal people.
I had to use extra energy to do very simple things, so that is why I was so exhausted. This can be described as the "invisible work" I have to do every second of the day. I have to compensate for the malfunctions in my body. My schoolwork, of course, was/is the most important thing in my life. Friends always came 2nd, and they understood that. I never had a problem with my schoolwork. I was always very bright and very efficient with my time. But when I exhibited the symptoms of POTS, it took me longer to complete my assignments. I experienced brain fogging throughout much of the day, so I would have to work harder to complete my work. I had to rest more because my body needed to regain energy. I didn't have as much time or energy to spend with my friends.
I constantly would explain to my friends that there is no cure or a "magic pill" to fix my symptoms. I had times where I did feel better. I would be able to hang out for the day at a friend's house. I would be able to go bum around at the mall. But there were times where I would not feel well again. There was always a constant up and down and up and down with my symptoms. Some symptoms would come at me at full force and then the next day I would be functioning rather well again. I was not able to see how my days would play out before they happened. I couldn't plan for get-togethers or RSVP to an event in fear that I wouldn't feel well that day.
This never went over well with my friends because they didn't understand. Sometimes when friends and/or classmates didn't understand what was going on with me, there would be plenty of gossip and rumors spread about me. I knew I shouldn't take it to heart, but it was still hard. I was still the same friend as I was before I got sick. I still cared deeply about my friends. I wanted to hang out and go places together. They treated me differently. They were always uncomfortable because they feared that I was going to faint if we played a game or something. They were always so cautious and talked behind my back. I am an approachable person. I'm not scary to talk to, and I always reminded my friends that if they had any questions that they should ask. I knew deep down that my friends cared and that they were not bad people.
I just think that the stress of a medical condition and the changes that I had to make because of POTS scared my friends away. I didn't get invited to many things after awhile because they assumed I would say no even though I didn't always say no. They hung out every weekend and had sleepovers and then came to school on Monday talking about the amazing weekend they had together. I was never invited to those though. It is difficult. I know countless people can relate, whether they have a medical condition or not. Friendships are always tested by life's events. How your friends handle these events shows you who is willing to stick around and who is not. Understanding makes the difference.
Friends support each other. You go to functions together. Share memories together. My friends and I would have lunch together and play in the school band together. We would have sleepovers and go bowling too. When I began to experience the first symptoms of POTS in 2005, my friends didn't understand at all. I suddenly missed lunches at school because of doctors' appointments. I began to not feel well so I would go to the nurse's office. I would not join them in sleepover nights when I was too exhausted to pull an all-nighter with them. I wanted to do the things I used to do with my friends. My body just wasn't on the same page as my mind.
My friends didn't understand because I didn't understand what was going on. I couldn't convey to them the pains I was feeling because I didn't know why I was in such pain. They thought I was making up my symptoms just so that I would have an excuse to not hang out with them. This was difficult especially when I needed their support at that time. My symptoms were complicated and were "invisible". I didn't have a broken leg or anything physically obvious going on. My symptoms were all internal. My autonomic nervous system was dysfunctional (dysautonomia) so my heart rate, blood pressure, respiration, digestion, blood vessel dilation and constriction, sensory regulation, and body temperature were all dysfunctional. These are not obvious to normal people.
I had to use extra energy to do very simple things, so that is why I was so exhausted. This can be described as the "invisible work" I have to do every second of the day. I have to compensate for the malfunctions in my body. My schoolwork, of course, was/is the most important thing in my life. Friends always came 2nd, and they understood that. I never had a problem with my schoolwork. I was always very bright and very efficient with my time. But when I exhibited the symptoms of POTS, it took me longer to complete my assignments. I experienced brain fogging throughout much of the day, so I would have to work harder to complete my work. I had to rest more because my body needed to regain energy. I didn't have as much time or energy to spend with my friends.
I constantly would explain to my friends that there is no cure or a "magic pill" to fix my symptoms. I had times where I did feel better. I would be able to hang out for the day at a friend's house. I would be able to go bum around at the mall. But there were times where I would not feel well again. There was always a constant up and down and up and down with my symptoms. Some symptoms would come at me at full force and then the next day I would be functioning rather well again. I was not able to see how my days would play out before they happened. I couldn't plan for get-togethers or RSVP to an event in fear that I wouldn't feel well that day.
This never went over well with my friends because they didn't understand. Sometimes when friends and/or classmates didn't understand what was going on with me, there would be plenty of gossip and rumors spread about me. I knew I shouldn't take it to heart, but it was still hard. I was still the same friend as I was before I got sick. I still cared deeply about my friends. I wanted to hang out and go places together. They treated me differently. They were always uncomfortable because they feared that I was going to faint if we played a game or something. They were always so cautious and talked behind my back. I am an approachable person. I'm not scary to talk to, and I always reminded my friends that if they had any questions that they should ask. I knew deep down that my friends cared and that they were not bad people.
I just think that the stress of a medical condition and the changes that I had to make because of POTS scared my friends away. I didn't get invited to many things after awhile because they assumed I would say no even though I didn't always say no. They hung out every weekend and had sleepovers and then came to school on Monday talking about the amazing weekend they had together. I was never invited to those though. It is difficult. I know countless people can relate, whether they have a medical condition or not. Friendships are always tested by life's events. How your friends handle these events shows you who is willing to stick around and who is not. Understanding makes the difference.
Thursday, May 26, 2011
"Just Keep Swimming..."
Alright so the Mayo Clinic is amazing. I will be going there again next week for a yearly check-up with Dr. Fischer. I will have another Tilt-Table Test done so that we can see my progress since 2008 when we did the first TTT. I'm nervous but excited at the same time. I do truly know that I have improved dramatically since 2008 because I was never really able to do any physical activity since winter 2006. I am now able to walk, dance, shop, and go to a college away from home! I was only able to achieve this today through hard work and motivation.
When I say that I was never really able to do any physical activity, I mean I wasn't able to walk continuously for 2 minutes without becoming dizzy and exhausted. Such a difference from being a cross-country runner! Ha ha! But, physical activity does help. My body screamed for me to stop moving. It was tired. It couldn't handle the postural changes or the gravity or the physical exertion. It took me several months to be able to walk around the inside of my house without feeling winded. It took me several more months to be able to make a lap around my small neighborhood (only about 3 blocks).
Then the spring of 2009 I was able to walk for 25 minutes continuously. This means that it took about 3 years to get to normal functioning. The fall of 2009 is when I started college. I had to walk to my classes, haul my laundry around the dorms, go up and down 3 flights of stairs during fire drills, and take part in activities that my friends and I did like cheer at football and basketball games meaning I was on my feet for 2 hours or so. What a difference determination made!
During this 3 year recovery stage, I went to physical therapy for several months to strengthen my joints and muscles to stimulate the blood flow. I had to push myself to get out of bed, to stand up, to force my body to walk around, and not get my hopes down when I was only able to walk for such a short amount of time. This was the most difficult challenge of them all. I was so accustomed to running for miles and miles while on the cross-country team. Having my body not cooperate with my expectations and wants was very difficult and very emotional. I use the term "disability" during this time. My body is not able to function correctly. If my body were a machine, it would be as if I had a broken part on the controls. My system is not working right.
To fix the problem, I have to keep going so that I do not have a disabled body anymore. I want to make that disabled body an able body again. And I am certainly getting there. Just like Dory says in Finding Nemo, "Just keep swimming. Just keep swimming...", well I just keep going. Keep pushing myself to go further. Walk 30 more seconds. Walk to the next street sign. To the next house. The more I move, the better I will feel. While I move I may not feel the greatest, but the pay-offs to what I do accomplish matter the most. I will be able to run again one day. I just have to work my way back up :)
When I say that I was never really able to do any physical activity, I mean I wasn't able to walk continuously for 2 minutes without becoming dizzy and exhausted. Such a difference from being a cross-country runner! Ha ha! But, physical activity does help. My body screamed for me to stop moving. It was tired. It couldn't handle the postural changes or the gravity or the physical exertion. It took me several months to be able to walk around the inside of my house without feeling winded. It took me several more months to be able to make a lap around my small neighborhood (only about 3 blocks).
Then the spring of 2009 I was able to walk for 25 minutes continuously. This means that it took about 3 years to get to normal functioning. The fall of 2009 is when I started college. I had to walk to my classes, haul my laundry around the dorms, go up and down 3 flights of stairs during fire drills, and take part in activities that my friends and I did like cheer at football and basketball games meaning I was on my feet for 2 hours or so. What a difference determination made!
During this 3 year recovery stage, I went to physical therapy for several months to strengthen my joints and muscles to stimulate the blood flow. I had to push myself to get out of bed, to stand up, to force my body to walk around, and not get my hopes down when I was only able to walk for such a short amount of time. This was the most difficult challenge of them all. I was so accustomed to running for miles and miles while on the cross-country team. Having my body not cooperate with my expectations and wants was very difficult and very emotional. I use the term "disability" during this time. My body is not able to function correctly. If my body were a machine, it would be as if I had a broken part on the controls. My system is not working right.
To fix the problem, I have to keep going so that I do not have a disabled body anymore. I want to make that disabled body an able body again. And I am certainly getting there. Just like Dory says in Finding Nemo, "Just keep swimming. Just keep swimming...", well I just keep going. Keep pushing myself to go further. Walk 30 more seconds. Walk to the next street sign. To the next house. The more I move, the better I will feel. While I move I may not feel the greatest, but the pay-offs to what I do accomplish matter the most. I will be able to run again one day. I just have to work my way back up :)
The Diagnosis and The Hero
So in my last post I talked about the process of misdiagnoses and such. Many POTS patients go back and forth and jumping from doctor to doctor, sometimes over a course of several years. I am one of these patients. 3 and a half years! Over 20 different doctors. At least 8 different hospitals. Countless blood draws. Some MRI's and CT scans. An EEG. 3 awful EMG's (painful). Some EKG's/ECG's. A sleep study. A few ultrasounds. An echocardiogram. And a lot of time spent with Mom in the car traveling to the medical tests and appointments!
But, I can't complain. I learned a lot about the human body during this process. Having this experience with POTS has allowed me to gain an understanding of people and their disabilities and/or physical difficulties that no one else may understand if they didn't have this all going on. Yes, there were plenty of drawbacks, but I'm young. I'm still young. I can bounce back. I have plenty of time to make up for the time lost during this 3 and a half year process!
Well, to get to the diagnosis, I had to go up to the Mayo Clinic in Rochester, MN. I had an appointment with a cardiologist, rheumatologist, and pain doctor. The doctors were very interested to hear my entire story from day 1. It was very nice to have doctors that were willing to listen rather than just attempt to treat me and send me away. They were very collaborative. Always updating one another with information. I had so many tests performed on me. It was amazing that the doctors accomplished so much in just a week (yes I said a week because when you're as strange of a case as me, the doctors want to check off every possibility).
One of the tests I had was called the Tilt Table Test (TTT). For those of you Star Wars fans, think about the end of Episode 3 when Darth Vader is slowly tilted upwards into an almost standing position when he is on the table. This is exactly what the TTT is like. I was strapped onto a hospital bed and hooked up to a few machines that measured my heart rate, blood pressure, body temperature, etc. I started off laying flat, parallel to the floor. I was then slowly tilted upward until I was just about standing, even though I was strapped onto the bed. I "stood" there for about 10 minutes while the machines were tracking my vitals and how they were different from the vitals taken while I was laying down.
POTS means that the body does not adjust to the pull of gravity. It means that while standing or with postural changes, the blood vessels in the body do not open and close as they should. So, the blood in the body pools in the extremities. When it does this, the body tries to pump the blood as fast as it can so it goes to the parts that need more blood like the brain. The heart rate increases. Blood pressure decreases. And the patient gets dizzy and may have brain fogging because of the lack of blood flow. Some get pains throughout the body because muscles and body parts do not get the amount of blood it needs.
When I had the TTT done, my heart rate increased from 78 beats/minute to 145 beats/minute within 2 minutes of me in the "standing" position. My blood pressure didn't significantly decrease, but it still did decrease. Just with this happening to me, my doctors knew that I had POTS.
When I had the test done, I went straight to get the good news from a doctor by the name of Dr. Phillip Fischer. He was the Head of the Pediatric and Adolescent Medical Unit of the hospital at the time. He has done a great deal of research on POTS. When the cardiologist sent me to see Dr. Fischer, I was very excited because I finally had a diagnosis. Dr. Fischer sat down and explained what POTS is, what is the prognosis of the condition, what I have to do to get better, and how he can help me get better. My mom and I probably talked to Dr. Fischer for at least 2 hours! He is literally the smartest man I have ever met. He's one of the kindest also.
Previous doctors always asked me whether I was depressed or was seeking attention from others. They believed that the pain I experienced and the fatigue and the palpitations and every POTS symptom I have was all in my head. How could I be in so much pain and no one was able to fix me? No doctor before Dr. Fischer knew what was wrong with me. All they could do was to give me another medication to add to my already long list from the previous doctors' prescriptions. That never helped me enough. Because those doctors all misdiagnosed me.
Dr. Fischer was different. He did not prescribe me more medications. He always asks me, "What do you want fixed?" This way of thinking is what every patient wishes their doctor to have. I'm lucky that Dr. Fischer was able to diagnose me correctly, or else I would still probably be down the medical mystery path right now. Others may see him as a colleague, a doctor, a mentor, a father, and a friend. I see him as an angel. He has changed my life for the better, just as he has done for so many other patients. He is the accurate definition of a hero in my eyes.
But, I can't complain. I learned a lot about the human body during this process. Having this experience with POTS has allowed me to gain an understanding of people and their disabilities and/or physical difficulties that no one else may understand if they didn't have this all going on. Yes, there were plenty of drawbacks, but I'm young. I'm still young. I can bounce back. I have plenty of time to make up for the time lost during this 3 and a half year process!
Well, to get to the diagnosis, I had to go up to the Mayo Clinic in Rochester, MN. I had an appointment with a cardiologist, rheumatologist, and pain doctor. The doctors were very interested to hear my entire story from day 1. It was very nice to have doctors that were willing to listen rather than just attempt to treat me and send me away. They were very collaborative. Always updating one another with information. I had so many tests performed on me. It was amazing that the doctors accomplished so much in just a week (yes I said a week because when you're as strange of a case as me, the doctors want to check off every possibility).
One of the tests I had was called the Tilt Table Test (TTT). For those of you Star Wars fans, think about the end of Episode 3 when Darth Vader is slowly tilted upwards into an almost standing position when he is on the table. This is exactly what the TTT is like. I was strapped onto a hospital bed and hooked up to a few machines that measured my heart rate, blood pressure, body temperature, etc. I started off laying flat, parallel to the floor. I was then slowly tilted upward until I was just about standing, even though I was strapped onto the bed. I "stood" there for about 10 minutes while the machines were tracking my vitals and how they were different from the vitals taken while I was laying down.
POTS means that the body does not adjust to the pull of gravity. It means that while standing or with postural changes, the blood vessels in the body do not open and close as they should. So, the blood in the body pools in the extremities. When it does this, the body tries to pump the blood as fast as it can so it goes to the parts that need more blood like the brain. The heart rate increases. Blood pressure decreases. And the patient gets dizzy and may have brain fogging because of the lack of blood flow. Some get pains throughout the body because muscles and body parts do not get the amount of blood it needs.
When I had the TTT done, my heart rate increased from 78 beats/minute to 145 beats/minute within 2 minutes of me in the "standing" position. My blood pressure didn't significantly decrease, but it still did decrease. Just with this happening to me, my doctors knew that I had POTS.
When I had the test done, I went straight to get the good news from a doctor by the name of Dr. Phillip Fischer. He was the Head of the Pediatric and Adolescent Medical Unit of the hospital at the time. He has done a great deal of research on POTS. When the cardiologist sent me to see Dr. Fischer, I was very excited because I finally had a diagnosis. Dr. Fischer sat down and explained what POTS is, what is the prognosis of the condition, what I have to do to get better, and how he can help me get better. My mom and I probably talked to Dr. Fischer for at least 2 hours! He is literally the smartest man I have ever met. He's one of the kindest also.
Previous doctors always asked me whether I was depressed or was seeking attention from others. They believed that the pain I experienced and the fatigue and the palpitations and every POTS symptom I have was all in my head. How could I be in so much pain and no one was able to fix me? No doctor before Dr. Fischer knew what was wrong with me. All they could do was to give me another medication to add to my already long list from the previous doctors' prescriptions. That never helped me enough. Because those doctors all misdiagnosed me.
Dr. Fischer was different. He did not prescribe me more medications. He always asks me, "What do you want fixed?" This way of thinking is what every patient wishes their doctor to have. I'm lucky that Dr. Fischer was able to diagnose me correctly, or else I would still probably be down the medical mystery path right now. Others may see him as a colleague, a doctor, a mentor, a father, and a friend. I see him as an angel. He has changed my life for the better, just as he has done for so many other patients. He is the accurate definition of a hero in my eyes.
Sunday, May 22, 2011
First Episode Down. Plenty More to Go...
Well after all of this chaos in October of my freshman year in high school, things weren't the same. I started getting intense pain in my feet and legs. Of course, being a runner, I thought it could be shin splints or something orthopedic. I went to several doctors, but they were clueless as to what was wrong. I went to a specialist and he recommended for me to be on crutches for awhile, thinking I did have shin splints. This was a mistake though. I began to have extreme and chronic lower back pain that ended up fixating itself throughout my entire back after some time. Being on crutches and having this pain was not helpful. So, of course I went to another specialist.
This time it was the back doctor. I had so many MRI's and CT scans done to see if there was anything physically wrong with me. After negative results on all of the tests, I was just a girl with lots of random pain. Then I was off to see a rheumatologist, oncologist (they found an abnormal MRI scan of my bone marrow one time, so they thought I had leukemia), plenty of neurologists, a few endocrinologists (since my hormones weren't cooperating and I was diagnosed with polycystic ovarian disease), and I was referred to a few psychiatrists (since they thought my pain could be caused by depression...uh no!! Everyone who knows me knows that I am the furthest away from being depressed!). This all took roughly 3 years to complete. So yes, this means that much of my high school social life consisted of making friends with all of the doctors and nurses I saw! Ha Ha! I had to have a sense of humor through all of this. And yes, it wasn't exactly what I wanted to do after school or miss school for, but going to figure out this mystery diagnosis is what I had to do.
I'm not the type of student who enjoys missing a few classes here and there. No! I would much rather be in school learning...I do have to admit that I am a bit of a nerd in that sense :) So instead of missing school, I would usually be able to go after school to the doctors (key word: "usually"). By the time winter came around my sophomore year of high school, I had to quit running and I was not doing so well in my honors band at school. I had to take the normal courses at school too rather than the honors and AP courses so that if I didn't feel well or I had to miss class for doctors' appointments, I would not be too far behind. But, at least I was still able to go to school!!
I began to have extreme pains throughout my entire body. Literally from head to toe in pain. Intense headaches and pin-point pains on my head, pains and pressure behind my eyes, muscular pain throughout my body, joint pains mainly in my hands, knees, and back, and extreme fatigue. I was a cross-country runner. I used to run a minimum of 5 miles a day. But during the winter of my sophomore year after the cross-country season had ended, I was not even able to walk for 10 minutes straight. Things were very different.
Standing up became a challenge. I had palpitations for the first time, which are the strangest feelings ever! I also had a very weak body. It is so difficult to describe it other than I felt like an elderly person with arthritis or something. Barely able to walk. Had to use the elevator in school because I couldn't walk up a flight of stairs without becoming very winded and lightheaded. There was just this exercise intolerance my body had. I had to get a note from my doctor saying that I could not perform in gym class, so I had a study hall in place of gym class. This was disappointing to me because gym was the most enjoyable class for me.
Sounds pretty depressing, doesn't it? But was I depressed...? HECK NO! I just kept going. I went to school when I probably shouldn't have gone because of the intense pains. I still went above and beyond all of my teachers' expectations, which landed me a 4.0 GPA. I was still achieving so much even with the chaos of an unpredictable and still rather unknown medical condition. As always, there were more struggles that I had to overcome in the following years. However, there were some very amazing times too. So don't be depressed with all of this. I have a very positive outlook on things. I never let POTS or anything get in my way of being happy :) I always have to live up to my nickname... "Smiles"!
This time it was the back doctor. I had so many MRI's and CT scans done to see if there was anything physically wrong with me. After negative results on all of the tests, I was just a girl with lots of random pain. Then I was off to see a rheumatologist, oncologist (they found an abnormal MRI scan of my bone marrow one time, so they thought I had leukemia), plenty of neurologists, a few endocrinologists (since my hormones weren't cooperating and I was diagnosed with polycystic ovarian disease), and I was referred to a few psychiatrists (since they thought my pain could be caused by depression...uh no!! Everyone who knows me knows that I am the furthest away from being depressed!). This all took roughly 3 years to complete. So yes, this means that much of my high school social life consisted of making friends with all of the doctors and nurses I saw! Ha Ha! I had to have a sense of humor through all of this. And yes, it wasn't exactly what I wanted to do after school or miss school for, but going to figure out this mystery diagnosis is what I had to do.
I'm not the type of student who enjoys missing a few classes here and there. No! I would much rather be in school learning...I do have to admit that I am a bit of a nerd in that sense :) So instead of missing school, I would usually be able to go after school to the doctors (key word: "usually"). By the time winter came around my sophomore year of high school, I had to quit running and I was not doing so well in my honors band at school. I had to take the normal courses at school too rather than the honors and AP courses so that if I didn't feel well or I had to miss class for doctors' appointments, I would not be too far behind. But, at least I was still able to go to school!!
I began to have extreme pains throughout my entire body. Literally from head to toe in pain. Intense headaches and pin-point pains on my head, pains and pressure behind my eyes, muscular pain throughout my body, joint pains mainly in my hands, knees, and back, and extreme fatigue. I was a cross-country runner. I used to run a minimum of 5 miles a day. But during the winter of my sophomore year after the cross-country season had ended, I was not even able to walk for 10 minutes straight. Things were very different.
Standing up became a challenge. I had palpitations for the first time, which are the strangest feelings ever! I also had a very weak body. It is so difficult to describe it other than I felt like an elderly person with arthritis or something. Barely able to walk. Had to use the elevator in school because I couldn't walk up a flight of stairs without becoming very winded and lightheaded. There was just this exercise intolerance my body had. I had to get a note from my doctor saying that I could not perform in gym class, so I had a study hall in place of gym class. This was disappointing to me because gym was the most enjoyable class for me.
Sounds pretty depressing, doesn't it? But was I depressed...? HECK NO! I just kept going. I went to school when I probably shouldn't have gone because of the intense pains. I still went above and beyond all of my teachers' expectations, which landed me a 4.0 GPA. I was still achieving so much even with the chaos of an unpredictable and still rather unknown medical condition. As always, there were more struggles that I had to overcome in the following years. However, there were some very amazing times too. So don't be depressed with all of this. I have a very positive outlook on things. I never let POTS or anything get in my way of being happy :) I always have to live up to my nickname... "Smiles"!
Saturday, May 21, 2011
How it all began
In June 2005 I moved on from 8th grade to high school. I was very excited, very driven, and very happy to start a new stage in my life. I decided to join my high school's summer running camp, which would help me in my decision of whether to join the school's cross-country team in the fall. I went to the camp. I accomplished my personal goals I had made. Ran my first 5K race only after a week's worth of running long distance. Still managed to obtain a 3rd place medal in my age group. I was on top of the world. Everything seemed to be going much better than according to plan. I was successful in the fall with my classes and I ran a few varsity races on the cross-country team as a freshman, which is pretty unheard of. All of this changed on October 1, 2005.
During a cross-country race, I ran perfectly. I ran well beyond my personal best and managed to get 17th place overall in a varsity race. However, the moment I ran across the finish line, I could not feel my feet. This was strange because I have never experienced that feeling after running. My shoes weren't too tight. The circulation in my body was normal. I just couldn't feel my feet. Then after a few minutes, I couldn't feel my legs and I got very dizzy. The paramedics at the race were worried and thought I was having a heart attack so they rushed me to the emergency room via the ambulance. It was quite fun riding in an ambulance for the first time. I was terrified though. I had no clue as to what was wrong with me. But what worried me most was that the paramedics did not know either.
At the hospital the doctors performed numerous tests on me. Urine tests. Blood tests. Heart rate monitors. Oxygen monitors. I felt fine. I just couldn't feel my legs and feet and felt dizzy. That was it. Since they could not find anything physically wrong with me, they sent me home and said I might be coming down with the flu. This seemed very odd to me. But sure enough, the week after this happening, I got flu-like symptoms. So, I thought I was going to be perfectly fine again. Oh boy was I wrong...
During a cross-country race, I ran perfectly. I ran well beyond my personal best and managed to get 17th place overall in a varsity race. However, the moment I ran across the finish line, I could not feel my feet. This was strange because I have never experienced that feeling after running. My shoes weren't too tight. The circulation in my body was normal. I just couldn't feel my feet. Then after a few minutes, I couldn't feel my legs and I got very dizzy. The paramedics at the race were worried and thought I was having a heart attack so they rushed me to the emergency room via the ambulance. It was quite fun riding in an ambulance for the first time. I was terrified though. I had no clue as to what was wrong with me. But what worried me most was that the paramedics did not know either.
At the hospital the doctors performed numerous tests on me. Urine tests. Blood tests. Heart rate monitors. Oxygen monitors. I felt fine. I just couldn't feel my legs and feet and felt dizzy. That was it. Since they could not find anything physically wrong with me, they sent me home and said I might be coming down with the flu. This seemed very odd to me. But sure enough, the week after this happening, I got flu-like symptoms. So, I thought I was going to be perfectly fine again. Oh boy was I wrong...
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