Tuesday, May 10, 2016

Random Thoughts

Love this picture! Photo taken from here.
Dwayne noticed I'm writing a lot more lately.

I'm desperately trying to process what is happening to me. Writing/journaling/talking helps. I'm so thankful to my many friends who have allowed me to babble on about this thing. I'm sure more than one of my friends just thinks I'm crazy. But I have been told MANY TIMES that steroids don't fix crazy. The remarkable transformation I had on the IV steroid treatment is almost proof positive that attacking antibodies are the main issue.

My head is POUNDING. It's almost migraine level pain. My right ear has been hurting a lot. Yes, I plan to go to the dr to have them check it out but, again--that pain was GONE with the treatment.

I can't sleep. You might think that's a side effect but I slept SO WELL on the steroid it was AMAZING. Insomnia is a symptom and a side effect of treatment. Joy.

My hands HURT and the pain is moving up my arms. They tingle. My index fingers are numb. I don't know what this is but I don't like it. Gone with IV treatments.

My mood is CRAP. I think this has a lot to do with how I'm feeling physically. But, from what I understand it's also a symptom.

I'm glad I had a respite with the treatments. I had a break from this garbage. I had a return to ME. I like to think I'm a generally positive person. I try very hard to find the silver lining in the dump heap because there is ALWAYS a bright side. ALWAYS. This thing is wearing me down. Fast. It's almost harder after having such a good week. That reminder of what it feels like to not have pain and mental "struggle" makes this darkness even darker.

But in the darkness, the light is brighter too.

Blessings...I have so many wonderful friends who have been willing to ask me how I'm doing but who also don't let me wallow in the muck I feel I'm in. I have a saint for a husband. This man knows me and knows how to live with me in an understanding way. He knows how to ignore my mood but to also reframe my mood. He knows how to smooth and soothe me. He knows how to keep me from bowling him over with my misery. He knows how to talk me through what is happening and what needs to happen. I was connected with a doctor who knew right off what was happening to me. He was able to diagnose and point me in the direction of treatment.

Let me pause there...that's been a HUGE miracle in and of itself. When I started having symptoms that were too big to ignore I had a terrible thought it might be MS. I went to my family dr and they did some preliminary blood work-all normal. Dwayne said he wanted a referral to a neurologist (I think he was thinking early onset Alzheimer's). I didn't want to go. I thought it was just my diet. He insisted that I get the referral so the family dr made an appointment. But they made it with a headache only neurologist. At the time I was only having an occasional headache so when I got to that dr, she couldn't do anything at all. She wanted to send me to a friend of hers. I was talking to friends with MS who suggested I go to a "local" MS guru doctor so I asked my family dr for that appointment. She HIGHLY suggested I go see someone else.

Pause again...I have a BAD habit of not listening to people. I have had a tendency to do what I WANT, what I think is right for me. That's not a horrible thing in that it kept/keeps me from peer pressure but it's a bad thing when I don't have all the knowledge and insight needed to make a truly educated decision. In this instance I had the foresight to defer to the expertise of my doctor who know me and who knows the medical community.

When I found out who the appointment was with, I also found out he is a good friend of a friend of mine. The appointment was pretty far out because this guy is AMAZING so I played the friend card and asked if she might see if there was any way I could get in earlier. As it turned out they had a cancelation anyway so I got in much earlier than first expected. ((I don't know if I was moved up on the cancelation list, but my guess is that I was.)) This doctor listened so patiently to my list of symptoms and all the craziness I had been experiencing and had an immediate plan of action that started that very day with a ton of blood work.

I'm part of an online community of people with Autoimmune Encephalopathy...this is NOT the norm. Usually the symptoms are ignored (particularly in women). Sufferers are told it's stress, it's hormones, it's X, Y, Z... In all fairness, this is a rare disease. It's not the common cold. Doctors are trained to put people in boxes where they fit. It's like sorting them out I think. If a doctor hasn't ever heard of this rare thing they don't even know that's an available box! Not only that, when it's rare you wouldn't go there first. You'd go to the more obvious things--you are overtraining, you are overstressed, you are getting old, you are premenopausal.  NOT you have a brain disease that only .01% of the population of the world has ((I made that number up...I don't know current statistics.)) So people go to different doctors for years sometimes looking for answers to why they feel the way they do. I found an answer in less than three months from my first doctor visit!! THAT is a HUGE blessing.

Another random thing. My eyesight. I noticed a long time ago that my vision was intermittently double or blurred. It wasn't related to being tired or anything else that I could pinpoint. Fast forward...steroid treatments take that COMPLETELY away. I have been saying that is a symptom not just normal aging all this time and I was right. (Well, I'm saying I was right...I'm checking with a friend who is an ophthalmologist to be sure my theory is correct It seems like if steroids could magically cure vision issues they would use that first and not have people get glasses!)

Well...I'm typed out for now.  ...not really but I have other things I need to be doing so I have to be done.

Thanks for stopping in and for sticking around.

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