Hope

So, like I mentioned in my last post, I’ve been out a long time. Again. The short version of the story is that I’ve been very, very sick. Sicker than I’ve ever been. It hasn’t been pretty.

I was doing so well for just a few short weeks. I woke up on top of the world, and I could do anything. I accomplished so many things in a day – more than I imagined I ever would be able to manage.

But then.

Everything has been sliding downhill. At first it was just a recurrence of the chest pain and breathing issues. Then it was random bouts of depression, leaving me in tears while playing Free Cell. I got worse, needing more and more sleep every day. I’ve been plagued with a low-grade fever for many weeks now. At some point my primary care doctor referred me to a cardiologist because she thought I might have a heart problem (I do, a mitral valve prolapse). The stress from my fears about heart disease (we die young of heart disease in my family, as young as in the mid 30s) caused me to start having panic attacks. Then every muscle, joint, and bone in my body started to hurt. I now see a massage therapist, a mental health therapist, and 2 chiropractors on a regular basis. Yeah, good times.

Anxiety about the tests to determine the severity of the mitral valve problem has really wrecked me. I knew I had a problem at that point, and I knew that no matter what the tests showed, I was going to lose. The simple answer for a mitral valve problem is that you can take beta-blockers. The cardiologist said that it won’t make you live longer, and it would just lower your blood pressure so the chest pain wasn’t so bad or so frequent. I can’t take beta-blockers. I know this because my blood pressure is always very low. I have a hard time getting out of bed. The chiropractor who does my adjustments noted that I have orthostatic hypotension (a condition in which your blood pressure falls when you stand up).  If I take beta-blockers, I will be completely non-functional – I’m sure of it.

So the two remaining possible outcomes are bad for me. Either the tests come out clean and I just have to live with it, or there is a severe problem and I’ll have to have open heart surgery. Either way, I lose. I managed to get the tests back sooner than they told me (it was supposed to be a week, but I got the echocardiogram back in two days and the stress test back the very next day), and they were clean. Fabulous.

The clean bill of cardiac health didn’t stop me from becoming debilitated. At some point, I tried to give up. I decided that it didn’t matter what the diagnosis was, I would only be treating symptoms and not the cause of the disease. Every possible option I had was a condition in which they couldn’t treat the disease, only the symptoms. I didn’t want to put myself through any more tests that were just going to freak me out.

But somehow, I couldn’t stop looking for the answer. So help me, I can’t not know. I kept researching, and I came across what I feel in my gut is a good lead: dysautonomia. Basically, it’s a broad term for an imbalance of the autonomic (involuntary) nervous system. I read pages and pages of information about dysautonomic conditions, and I have to say, it really fits. The symptoms describe things that were diagnosed in my childhood and young-adulthood (TMJ, loose ligaments from what is likely a connective tissue disorder, IBS, insomnia) and things that have just started happening now (numbness on one side of my face, searing pain in my right shoulder when I brush it against my pillow as I roll over, panic attacks, extreme fatigue, orthostatic hypotension, chest pain, trouble breathing… etc.). I just need to find a good neurologist, and I suspect that my diagnosis will be confirmed.

I was not myself anymore. I didn’t recognize the person I’d become. I hadn’t fostered in two months. I had limited tolerance for my knitting and crochet. I could barely get off the sofa. It was really, really bad.

Earlier this week, I saw the chiropractor who deals with nutrition. He has been trying his best to fix me, but it’s kind of hard to do when the symptoms I’ve had are things that no one in the office has seen before. It seemed that all this started when my immune system got out of balance again, so he tried to push it the other direction. No dice. On Tuesday, he gave me things to help control the inflammation, leaving the immune system balance out of it. The most notable difference is that he added B12 supplements to my list. He also added a cream with several other B-vitamins in it.

On Wednesday, I did get the low-grade fever, but it was truly less bad than it had been. I also stopped feeling borderline-suicidal (I’m not actually planning to kill myself, so don’t worry, I just found myself sincerely wishing for death to take me soon). This may have been a mistake, but I called the shelter and asked for kittens. I pick them up Thursday afternoon! Michael will have to be responsible for them if the one day was a fluke, but I don’t think it will come to that. I actually feel better for the first time in two months. Not on-top-of-the-world better, but just functional. Like I could see my old self again. I thought I was gone forever.

I mentioned the B-vitamins for a reason. A lot of the research I’ve done suggests that people with a dysautonomic condition are helped with the addition of B-vitamins. It seems to get the nervous system under control somehow. I can’t figure out if the vitamin deficiency causes the problem or if the vitamins just treat it, but either way,  I think it’s working. It makes my self-diagnosis that much more likely. The problem with self-diagnosis (for me, at any rate) is that I just know enough to get myself into trouble. Hence the confirmation from a neurologist.

So, I’m hoping this works. I’m hoping I get better. And I’m really hoping that this is the sort of thing that goes away on its own, and not the degenerative disorder that is has the possibility of being. Bottom line – I now have hope.

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6 thoughts on “Hope

  1. Hi Barb, hope you feel a little better each day- you have really been through the wringer, what you sound to be dealing with is tough. Im glad you stumbled across the vitamins, as sometimes, finding the right combo or even just one of the right ones can make a world of difference, without all the prescription drugs that cause almost more trouble than they help. If you have an open minded doctor who is willing to go with alternative medicines along with the western ones, the two of you may be able to uncover some different ways to treat whats happening with little to no side effect, but work with a doctor- I understand you saying you know just enough to get into trouble, same here, but I was amazed to find out that the doc that our family has had for years is open to the non traditional, and he as been a real help with several issues in the family that are oddball ones. Sending prayers and good wishes your way, and good luck with your new little ones, post pictures when you can!! Take care, and be good to yourself!

  2. All I can say is that I know if you can keep your “head in the game” (and, really, I don’t mean to quote “High School Musical” at you), I believe you’ll figure this out and be able to come through it. Don’t give up!! Best of luck…

  3. I’m sorry you’re going through all this. I really wish I knew what to do to help. Pet kittens, that always makes me feel better. 🙂

  4. Barbara,
    I’m so sorry you’ve been going through all of this, but glad to hear things are starting to turn around. Sending you lots of love and positive thoughts.

    xoxo
    Bee

  5. Wow, I had no idea so many people, especially people I don’t know, were paying attention. It brings a tear to my eye. Thanks, everyone! I will try to get through this. 🙂

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