I got thrown so off balance from that trip that it's nearly March and I'm still trying to reclaim my balance and stability. Going off all my supplements and cheating a bit on my diet really upset my body. It's been a roller coaster ride of extra long PMS (about half the month), mood swings including total lethargy/ apathy and depression, weight gain, fibromyalgia flares like I used to get before going to see my doctor for the first time, inflammation and sore joints, lots of gut irritability, extra dry peeling skin, increased sensitivity to light and sound, feeling jumpy and easily startled, continued palpations...
But honestly, the worst of all has been my temperature issues. I've been freezing to the point of shaking while sitting in an extra hot bath or in front of the space heater. My skin will turn red or swear, but I still feel hypothermic internally. I can't even feel the heat on my skin sometimes. Other times I'll feel like I'm running a fever, but if I let my skin be exposed to the air my skin will freeze. It's torture - I can't feel comfortable!
In the last few weeks I've started to have what I think are increasing histamine issues. Any food I eat is leaving my skin itchy with occasional small hives or welts, but worse than that is it leaves me fidgety. I can't sit still without feeling the need to squirm, like ants crawling in my blood stream.
Over the past week I've been fighting low blood pressure too, to the point that even salt and licorice aren't helping enough. Exercise raises my systolic about 5 points, but not my diastolic. I question the accuracy of my blood pressure machine a little bit, but it hasn't given me a reading over 95/55. The thing is... the readings feel accurate. I never feel truly sleepy - "tired" to me feels like I'm overspent but still have to burn off a chocolate bar before I can fall asleep (I don't eat sugar.) This week I've been feeling so sleepy often, and caffeine is making it worse. I'm fairly confident I crashed my adrenals. Again.
I'm fighting to regain stability. My body was really relying on my supplements and diet, and now I'm afraid to even consider stopping them again.
So was it worth it? The not taking my supplements and cheating on my diet for weeks so I could see a neurologist?
Well... I don't know yet. Dr. Cohen was great to work with, I really respect him. I don't have conclusive results from the testing yet, though. Based on the Zio Patch results he wants me to go see a cardiologist. I'm going to go, but I can't afford to go quiet yet. I also want winter to be over before I do more traveling. I've seen lots of cardiologists in my life for my Pulmonary Stenosis, and I'm tired of hearing the same thing from each one: "Not quite normal, but you're okay, I think, so just come back in a year to redo the tests." I think it's finally time to see a specialist - a cardiologist who is Dysautonomia literate. A cardiologist who can explain my heart rate issues. Someone who can actually tell me what's not quite normal and what to do about it.
I think what was worth it was getting the Zio Patch test done so that a cardiologist can worth with me right away rather than just doing more testing. My Zio Patch showed some issues. But I also have some issues with it.
The problem is that I clicked the button to record a symptom way more than it says. I was told on the phone that I didn't click the button during some of my heart's biggest results, therefore it wasn't considered to be problematic on my test results. The problem is, I'm fairly sure the Zio Patch only recorded about half of my button presses, so I'm willing to bet I did actually press the button during those times. It infuriates me. Their diary log for why I pressed buttons wasn't large enough, so I included a note page full of why I pressed the button. That note page was clearly ignored. But the results I do have do show problems. I just don't know if these results are concerning enough to get a cardiologist to take me seriously.
So no, I'm not sure if it was worth it yet. Either way, the Zio Patch left me a horribly itchy nasty rash for 2 weeks after I took it off, and that was tormenting at times. The rash crawled up into my neck and arm pits, so it wasn't possible to just ignore. So I need the results to be worth it to make up for that rash! :)
As for my other tests...
Lyme testing showed a past mycoplasma infection and one or two bands positive for Lyme - can't remember and can't find results. Either way, 3 bands are needed for a Lyme diagnoses. Yes, I did do the Quest testing, not the Igenix. It's very possible this test wasn't sensitive enough, I know. I chose to do the Quest testing knowing all this due to cost and availability. I knew it might only be a starting point.
The echo? Well no one ever contacted me to give me results. My doctor said he was told the results didn't show some other disease. The nurse that performed the echo was the only person to tell me he saw the valve with the Pulmonary Stenosis. So I know it's still there, at least. I'm hoping that the cardiologist I see can review the results for me.
Up next is my hearing with the judge for my disability case. 2.5 years of appeals are leading to this hearing. I don't have much conclusive evidence to present to them, just lots of doctor visits and labs. I know people who have won with less diagnoses than I have, but I highly doubt I'll win - at least not here in North Dakota. They don't normally give disability to people under age 50 because they say "young people are resilient." I'm not totally bedridden or in a coma, so therefore I can do some type of work. They have no understanding of how disabling chronic fatigue is, and it's been very obvious through the whole case. I keep arguing about the fatigue (and I am officially diagnosed with it), but they kept denying me saying the fatigue isn't "severe enough." They don't have a clue, and they're not trying to listen to my doctors or look at me themselves. I'm ready for it to be over. The stress the case has caused me has not helped at all. I often wish I never applied at all. I felt pressured into trying to do something for our financial situation, but this case has been more work than I've been able to handle.
Anyway, I'll update this blog when I have a plan for the cardiologist... yay... I'm so exhausted. I just want my life back. I don't want my life to be about my health anymore. Tired of this. I just want to be a person that can work towards life goals and dreams again. I want kids, I want to own a house, I want to be able to brag about achievements in my career... I want a career... yeah. I'm tired of this.
