My story begins three and a half years ago...
*The Road to Finding POTS*
In March of 2008, I was in college and working close to full time at my customer service job. I was standing at the customer service desk when I started to feel very light headed and dizzy, and then started having chest pains. I started to feel so poorly, that I collapsed and was sent home. (After I waved off a trip to the hospital.) My doctor sent me for a stress test which was 'unremarkable.'
From that day on, I was violently ill (to my stomach) several times a day every single day. At first, the doctor told me it was the stomach flu. Then when it lasted longer than two weeks they called it food allergies and send me for an allergy test and blood work. When it went on for over a month, they claimed I had to have something wrong with my digestive system so they tested me for Crohn's. When all of my testing was, again, clean, they sent me for a colonoscopy and endoscopy. This was something that I felt was unnecessary, but I received a lot of pressure from both my doctors and Z's mom (who is a nurse) to do. After being threatened, by my doctors, that they wouldn't treat me further without the results of those tests, I gave in.
During the procedure, I had a problem with the anesthesia and slipped into a coma. They were unsure whether they would be able to wake up me at all, so they allowed my boyfriend (who had brought me) to come and see me. By a stroke of luck, they managed to bring me around three hours later. All I remember is wondering why the hell my boyfriend was at the edge of the bed bawling. The look on his face when I woke up and asked for cranberry juice is something that I will never forget. Ever.
Both results came back clean, so I almost died for nothing.
I was told that I had IBS, and that my collapse at work was anxiety. Despite numerous protests from me that it was NOT an anxiety attack, I was given an anti anxiety medication. Again, I was told I would receive no further treatment until I tried it, so I did. That gave me suicidal thoughts, so I stopped immediately. They wanted me to try others, but I refused. I knew the difference between a panic attack and what I was having. I'd had a panic attack before and with a panic/anxiety attack, there is a feeling of fear. I never had that during any of my 'episodes', and it's a very important distinction!
I was in and out of the doctors every couple of weeks because my digestive symptoms kept up despite drastic diet changes. My other symptoms continued as well and I was told that it was "all in my head". (Something that so many POTS patients are told.)
As I had dropped over 20lbs (weighing in at just around 80lbs at this point!) I was sent to an outpatient eating disorder clinic to try and gain weight. Again, my doctor felt it was 'all in my head' and that I was an anorexic. Three weeks into treatment, the center closed. I gained no weight. After this, my doctor sent me to yet another GI specialist; my third.
So, I went to see the third specialist. This woman read all of my work ups, and questioned me about my 'anxiety disorder'. I got extremely upset and told her that that was _not_ what I had, and explained to her what happened during my episodes. She asked me to lay down and took my blood pressure. She asked me to sit up, and to stand and took those blood pressures.
She looked at me, and goes "have you ever had a tilt table test?" I said that I hadn't. She goes "I'm going to send you for one. I think you have a condition called POTS. Postural Orthostatic Tachycardia Syndrome."
I asked her to write it down and went home to look it up. When I first read about it, I cried. This *had* to be it.
So, I went for a tilt table test. I was strapped to a table and tilted to almost standing. They took my blood pressures and monitored my heart rate every minute, and if I passed 45 minutes with no significant event then I had a 'clean' tilt table test. At minute 44, I crashed. Hard. My blood pressure dropped into the 30s, and my heart rate went into the 180s. It was official: I'd flunked!
They told me I had something called NCS or Neuro Cardiogenic Syncope.
When I went back to see the GI specialist, she told me that my tilt table showed "Delayed POTS"(an example of an EKG for delayed POTS).
So, there it was. Finally, at last, my condition was real! It has a name! I had POTS!
I was so relieved, and happy, to know that I wasn't crazy; that it wasn't "all in my head", that I cried.
*****
A Body Ravaged:
At this point, when my POTS was discovered, I'd lost over 20 lbs. I was so constantly sick that I'd had to both quit my job, and leave college. (I was fortunate in that I could switch my major to another in my field and graduate when I wanted to, but it was heartbreaking to be unable to finish what I'd started.) I could barely get out of bed in the morning, and would come close to blacking out trying to get up.
The first is 'before POTS' pictures, and the second is a 'now that I have POTS' picture (I actually was thinner than this photo, this is me last year at my highest post-contracting-POTS weight):
Struggles and Hurdles:
1. My biggest hurdle with POTS has been, and continues to be, lack of support.
Friends: When I first fell ill, I was sick so often that I couldn't go out. Being in my early 20s, all (most of) my friends wanted to do was go out, or drink, or both. I could do neither. Even when I felt well enough to meet someone for coffee or to go tot he movies, I could have episodes out of nowhere and would have to cancel or leave. I lost friends quickly. Some tried to stick around, but how long my disease has lasted, and the limitations that go with it, has cost me most of my friendships. Even those I had known almost my whole life. I felt abandoned then, and I'll admit to being a little resentful towards them now. The only reason that I can come up with for their actions is immaturity. Not that they're immature, but that they are unable to connect or understand an illness like this.
Thankfully, I've managed to find friends in other areas, including online through 43things.
Lack of Support Groups: There aren't any support groups for POTS, at least not in my area. I've joined facebook pages for the conditions, but it's not quite the same as being able to connect with someone in person who knows, to some extent, what you're going through.
Family: My family is actually one of the lease supportive groups in my life. It's unfortunate. Both my parents, but mostly my mom, insist that if I just tried harder that I would get better. As if I don't try. It's insulting. My specialist provided me with a DVD explaining all about POTS, and even though she's viewed it my mom still says all of the same things. I swear she's said everything on this list: Twenty things not to say to a Chronically Ill Person. I'm often being given a lot of grief when I have to say no to things, or am not up to participating. It's heartbreaking to hear that I don't try, that they're disappointed, that I'm perfectly fine, or that I need to "just suck it up and get over it" as if I'm lazy or have a cold.
Thankfully, I have an incredibly caring and supportive boyfriend who has stuck by my side.
2. My second biggest hurdle, has been dealing with businesses and school programs.
Jobs: I've gone on numerous job interviews just to be insulted when I bring up my health. I think a large part of this comes from the fact that I don't actually look sick. Another, in my mind, is the liability of my condition. Maybe, they hear "heart condition" and panic? Not to mention that no one seems to have ever heard of POTS, making it difficult to have credibility.
School programs: I've found, have been the same. I interviewed to join a master's program, and when I asked if there was a part-time program (because it would be better for my health) I was told, and I quote, "no one wants a broken toy." Yes. To them, I was nothing more than a broken product. I went home and cried.
3. My third hurdle is actually managing the disease.
Finding a doctor who's somewhat knowledgeable was a challenge, and so has been trying different treatments.Thankfully, I've found a specialist in my area but it's extremely costly, time consuming, and, sometimes it's heartbreaking when the treatments don't work or bring little relief.
Although, honestly, the disease would be easier to tolerate with support and a little understanding from some, or all, of the above.
4. Complications and uncertainties...
POTS has many complications that go along with it. POTS makes surgery very risky. The fluctuations in my BP make dealing with anesthesia tricky. I have a prolapsed Mitral Valve, my vitamin D and calcium are constantly depleted, and there's a chance that having children is hazardous to my health-if not fatal.
5. The Law.
My specialist believes, without a doubt, that the cause of my POTS was a (now) popular vaccine. It's the only thing that fits the timeline of when I fell ill. She had done a study on the vaccine and it's relation to another POTS patient, and there was a definitive link there as well.
I was told that I had a good case against the vaccine company, but no lawyer would take my case for two reasons:
1. the statute of limitations. The SoL is three years from the first onset of symptoms, and it had been just over three years. They thought they could get around it though because my condition wasn't actually FOUND until just last year and the statute can be read as from when the condition is first defined for the 'injury to have occurred'.
2. It would be a costly, long battle even though they could get around the statute of limitations. If I was in a class action suit with a lot of other people, it would have been worth their time and effort, but trying to face an entire company as one person with a little known disease had almost no chance of winning. If they don't have a pretty good chance of winning, or making money, they don't take the case.
It was devastating to me. Here, a company had effectively ruined my life- or at the very least thrown it way off track- and had cost me thousands in medical bills; not to mention the medications I'll have to take for the rest of my life. ($40+ per month is a LOT of money, especially for someone who's unable to work.) I wouldn't have asked for much, just enough to cover my medical expenses, but no one would take it.
I still find it incredible that they can harm someone, and then say 'well if you can't tell us in three years, we're no longer responsible.'
POTS has many complications that go along with it. POTS makes surgery very risky. The fluctuations in my BP make dealing with anesthesia tricky. I have a prolapsed Mitral Valve, my vitamin D and calcium are constantly depleted, and there's a chance that having children is hazardous to my health-if not fatal.
5. The Law.
My specialist believes, without a doubt, that the cause of my POTS was a (now) popular vaccine. It's the only thing that fits the timeline of when I fell ill. She had done a study on the vaccine and it's relation to another POTS patient, and there was a definitive link there as well.
I was told that I had a good case against the vaccine company, but no lawyer would take my case for two reasons:
1. the statute of limitations. The SoL is three years from the first onset of symptoms, and it had been just over three years. They thought they could get around it though because my condition wasn't actually FOUND until just last year and the statute can be read as from when the condition is first defined for the 'injury to have occurred'.
2. It would be a costly, long battle even though they could get around the statute of limitations. If I was in a class action suit with a lot of other people, it would have been worth their time and effort, but trying to face an entire company as one person with a little known disease had almost no chance of winning. If they don't have a pretty good chance of winning, or making money, they don't take the case.
It was devastating to me. Here, a company had effectively ruined my life- or at the very least thrown it way off track- and had cost me thousands in medical bills; not to mention the medications I'll have to take for the rest of my life. ($40+ per month is a LOT of money, especially for someone who's unable to work.) I wouldn't have asked for much, just enough to cover my medical expenses, but no one would take it.
I still find it incredible that they can harm someone, and then say 'well if you can't tell us in three years, we're no longer responsible.'
********
Where I am now:
Health stuff:
I'm not feeling that much better, but I've definitely made progress from the two years ago when I couldn't get out of bed, and would black out using the bathroom!
- I take two tabs of midodrine 3x daily, and 2 tabs of florinef 2x daily. I also take heartburn medication for my POTS induced acid reflux.
- My diet has drastically changed. On top of changes in what I eat, I drink appx 10 cups of water or more every day. I also take grams of salt.
- I wear compression hose. (Not very sexy, but they're a great help.)
- I haven't been able to gain weight, but I'm able to eat some meals now which is a leap ahead of where I used to be. In the past, the nausea was so bad (from blood rushing to my abdomen to help digestion) that eating was almost impossible.
Life Stuff:
- I now am able to: go to the grocery store, take a warm (not hot) shower, stand for more than a few minutes, and eat more than I could before. I have even taken both a short, and a long, road trip!
- I've recently started working part time. This was a HUGE step forward for me. It took me over two years to get to the point where I can work eight to twelve hours a week. Any more than that and I'm passed out sick for days.
- I'm planning on applying to graduate school for the first time since I had to drop out two years ago. Another huge step for me.
*****
I still have a long way to go, and I may never get where I hope to be, but I've made amazing progress from two years ago. I can only hope that two years from now I'll have made even more progress!
*****
Thank you so much for letting me share. ♥
