Growing Deeper Roots: My Story of Invisible Illness

We finally found a PT!  After asking around on the POTS Facebook page, I found a physical therapy office in Jarretsville, Maryland called McLaughlin Physical Therapy. The owner, Kevin McLaughlin, has 6 or 7 POTS patients and is pretty familiar with the exercises and therapy needed to help work against the mechanisms of POTS or neurocardiogenic syncope.  In his evaluation yesterday he determined that my posture could be improved to help the blood flow to my brain. Apparently my shoulders turn in too much, but since I am young, we can train them not to. He says this can happen from being on the computer, reading, or leaning over too much. I guess my years of leaning over a book are catching up to me.  He also noticed that my right shoulder is pulled back abnormally, indicating a weakness in my rotator cuff. I explained that in May 2013 I ripped my rotator cuff. I was hoping that he wouldn't ask how, but of course he did. Sports? Nope. Lifting something heavy? Nope. R...

Yesterday I had a migraine from hell and two syncopal episodes. I ended up spending most of the day resting and trying various things to remedy the migraine, with little success. Finally, I fell asleep at around 5 this morning.  Today, I woke up with a slight ache but by this afternoon it was gone. Feeling a little better, my mom and I decided to try some water aerobics. We've read online and heard from other POTS patients that water jogging can be a helpful exercise to recondition your body to vertical exercise and orthostatic tolerance. My aunt and uncle live down the road from us and have a pool so we spent the afternoon working on some water exercises.  I started by speed walking the border of the shallow end of the pool. Using my super awesome Fitbit Charge HR, I monitored my heart rate. Because this speed walk was a warm up, I aimed to keep my heart rate at "Base Pace," which is 145 bpm for me.  Then, I jogged in place for 30 minutes. I wanted to k...

So it has been another roller coaster of a week. And you all know how I feel about roller coasters.  After Monday's half productive half syncopal session of PT, I was given a lot of fluids and more medication.  Tuesday morning I was told that we were not at the point of discharge/transfer because my level of abilities and baseline health were too low. This was very upsetting because I felt ready. And I knew that if they would give me the chance to work with PT and OT, I could show them that I was ready. However, I was only ever given 30-45 minutes a day with them so I could never really prove my potential. To make it all worse, they never even saw me on Saturday, Sunday or Tuesday. This series of events made me very frustrated and angry. There were many tears of frustration.  Yesterday we were told that between the OT and PT recommendations and the insurance companies utter tomfoolery, I would probably only be approved for sub-acute rehab. Sub-acute rehab is basica...

If you have ever been in the hospital or a rehab center or suffered from chronic illness, you are probably familiar with frustration.  When you spend four months looking for answers from a dozen doctors in half a dozen different specialities but are still left empty handed, you get frustrated.  When you can't find the words to describe how you are feeling physically, mentally or emotionally and you feel completely misunderstood by your friends, family, and doctors, you get frustrated. When you wake up to your team of doctors saying that you haven't made enough progress to be discharged to rehab, you get frustrated.  You feel frustrated and angry and helpless with all of your doctors every time you get bad news.  You feel frustrated with PT and OT for not giving you more opportunities to make progress. You feel frustrated with PMR for not letting you prove to them that you are making progress.  But most of all, you feel frustrated with your weak, bro...