Why do I even bother with new testing?

You've been warned!

We've been home for a few days now after being at Cleveland Clinic for more testing. This time they were looking for POTS (Postural Orthostatic Tachycardia Syndrome). According to the Cleveland Clinic, Postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation (blood flow). POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down. The primary symptom of an orthostatic intolerance is lightheadedness, fainting, and an uncomfortable, rapid increase in heartbeat.
This also causes heat/cold intolerance, severe fatigue, pain, sweating like mad, digestive issues and many more. POTS would explain all my symptoms. I was hopeful that this will be the answer I have been looking for for many years. But yet cautious because I did not want to be let down again. I had a full day of testing. QSART, Tilt Table,  ECG, Echo and
Cardiovagal ANS. I was so exhausted by the time for the tilt table test that I could hardly stay awake.

And just what I predicted, the results for the Echo and Tilt Table are negative for POTS. On one hand, that's great that I have a healthy heart. It truly is. But, on the other hand, I am so sick and tired of doing this dance. Dance of having a false sense of getting closer to what is actually wrong with me, getting my hopes up, then be utterly disappointed and back to square one. It's torturous. Causes such depression and even self loathing. Seriously, I hate myself when I get negative or normal results. It makes me think "Maybe they are right. It is all in my head and there's nothing wrong". I feel useless, stupid and broken. I can't work. I can't thoroughly clean my house. I can't drive. I've missed functions that are outside because of the heat. I've missed functions because the pain and fatigue is too bad. And on the bad days, I can't get out of bed or need help walking 15 feet to the bathroom. 

So why do I keep agreeing to these tests knowing NOTHING will ever tell me exactly what is wrong with me? Ok yeah, some day maybe something will show. Ya know, AFTER I've had a disease associated stoke or heart attack. Or hey, maybe when I'm dead they will figure it out. Ok, Ok. I know I'm being a bit dramatic there but really, this is the angry thoughts that go through my head every time I hear nothing is found. I get pissed off. I yell, cuss and scream. I sob. I ugly cry. It's not pretty folks. I wanna say f**k it all. I'm never going to another doctor. I am never doing another test. I don't care if my arm is falling off. NO MORE TESTS!!

Ok, I'm done feeling sorry for myself. I do feel better getting that out. Oh and sobbing like a fool earlier. That helps. As did the bag of Unwrapped Starburst Minis. But that's neither here or there. I think I go through this pain and disappointment every time because I carry a glimmer of hope that my actual diagnosis will be found. I want vindication that there is truly something wrong with me. I want to know if I'm going to progress so I can plan things. I want to give Hubby and the kids a peace of mind that mom is not going to keel over tomorrow or become a huge burden in 10 years. You would think that after 10+ years of searching for a diagnosis that I would be used to the idea of a normal test result and that the mystery will not be solved. To know what the future brings. Look, I do not want MS, Systemic Lupus or some horrible incurable disease. No one wants that. I just want an answer. I deserve at least that much. 

Hugs!!

Jenn

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