...that tomorrow will be better!

"... that the Lord hath made. I will rejoice and be glad in it." Psalm 118:24

This is also the day before the day that everything is going to get better! This is my new philosophy. This is what has kept me sane since February 10th. This is what happened.

Having a headache is nothing new. I woke up with a headache one morning in mid October, and I have had a headache every day since. On Feb. 9th and 10th, the headache was getting progressively worse. After relaying this to my doctor, I was told this was more than likely it was the diagnosis they had been toying with, Hashimotos Encephalopathy, and that I should start immediately taking 60mg of prednisone. 60?!?! Seriously?!? Anyone who has ever taken prednisone can understand my hesitation. My current dosage has been 5-10mg a day. I couldn't imagine the side effects of 60?! I was going to be bouncing off the walls hyper! Goodbye, sleep, nice knowing ya! Goodbye cheekbones, again. Well, I had to do something and maybe this would get it under control. I took the 60 and sat down in my recliner waiting for it to kick in.

My heart rate increased. Here it comes. Wait, I feel strange. I can't hold my head up. My head feels like it weighs a hundred pounds. My eyelids keep closing. It is an effort to keep them open. This definitely isn't the side effects I expected. My tongue wouldn't work like I wanted it to. My speech was slow. Uh oh. Not good. Better call someone. Mom n dad were getting ready for my niece's beauty pageant, so I didn't want to call them. I didn't want anyone getting scared because this was about to pass, I was sure of it. Called my sweet friend. She confirmed what my slow mind was telling me - might better go to the hospital. Then my tongue and the right side of my face went tingly then numb. My left arm started to ache and feel strange, then my left leg. I tried to get out of my recliner and almost passed out. Yep, might better do something. Called my super sweet neighbor, who was there in an instant. She confirmed the hospital plan and loaded up myself, her 2 kids, and my 2 kids and headed to the hospital. Thank you, Lord, for good friends!

As I sat in the ER waiting room, the symptoms got worse. The headache was bad and it felt as if there was lots of pressure in my head. I did finally call my parents, who were there in record time, of course. My mom kept telling me to wake up. I was awake and aware of what going on, I just couldn't keep my eyelids open and didn't want to move. It was all too much effort. This, my friends, is a very scary feeling. Then, an even stranger feeling hit. Now, I have never passed out, and have no idea what it feels like, but I assume it felt like this. I felt as if I were losing myself, as if I were sinking into something. This something wasn't scary while it was happening. It was somewhat comforting. Like snuggling down in a deep sleep. Then I heard my moms voice and felt an extreme wave of nausea and awful headache. I snapped out of it. Ok, that was scary.

Long story short, I got admitted for 3 days of high dose IV steroids, the first treatment for Hashimotos Encephalopathy. This, of course, after nurses and doctors alike said, "Hashimotos encephalopathy?! I've never seen that!" Then when seeing me later (after I know they went and googled it) telling me how rare that diagnosis really was! Lol! They began the IV steroids and by the next night, I was feeling better. After 2 days worth, the strange symptoms were gone. Awesome! This would cure it! Wonderful! I came home just in time to help Molly get her valentines ready for her class.

Then the symptoms came back: right side of face and tongue numb, left arm and leg weakness, pressure in head, bad headache, extreme lethargy, slow thought process. This is what I began referring to as "spells." during each spell, I would always wonder if the feeling in my face and the other symptoms would subside or leave permanent damage. The spell began lasting longer. I was out of the hospital a whole 10 days (on 60mg prednisone) before my neurologist at LSU agreed to try HE treatment #2-IVIG therapy. I was admitted to LSU for 5 days of IVIG. Now, I could write a book about what happened there, but I know you don't what to hear all that. I can sum it up by saying that my symptoms were doubted, unnecessary tests ran and crazy stupid diagnoses given. The only thing that got me through that without strangling anyone was knowing that the IVIG was the next line of treatment for HE.

I did feel somewhat better while in the hospital, but don't know if it was the IVIG or that I was just laying around not doing anything. I also learned that my neurologist, not being sure of the HE diagnosis, gave me the lowest recommended dose of the IVIG. Soooooo, when I got home and the symptoms once again returned, the question was, was the IVIG not working, or was the IVIG dosage too low?!? Ugh! But, I did get home just in time for my baby's 2nd birthday! Then the symptoms returned.

I was on my own again to try to find treatment. None of my doctors here would see me with neurological symptoms. My neurologist told me she was going to call it a "simple migraine" and to follow up in 6 weeks. Really?!?! Reeeeeeally?!?! Scratch her off the list. I do research to see what doctors close to us have ever treated HE. I found a doctor in Dallas at UT Southwestern that is a neuroimmunologist and has treated HE and done research on autoimmune diseases of the brain. I called. His first appointment is June. Seriously?!? Well, if he received ALL my medical records and it was determined I needed to be seen earlier, THEN he might get me an earlier appointment. Well, that was 3 weeks ago and LSU STILL hasn't sent my medical records!

In the meantime, I am still having "spells." On a good day, only 2 or 3, on a bad day, many more. I can't drive because of the spells. If I do too much, like try to pick up the house or simply take care of an active 2 year old, the spells are worse and/or last longer. Oh, and a new symptom was thrown in a couple weeks ago - nausea. So I take nausea meds at least twice a day.

I have to say that I couldn't have made it without my sweet momma. I thank God every day for her. She has practically lived with us to take care of me and the kids! Still can't be seen by a doctor. Tried to be seen by another neurologist in town just to be told that he had to have LSU records. Well, scratch that one off cause that'll never happen.

But life goes on. I might be watching it from the couch, but life goes on. I feel bad because I am tired of complaining. I know people probably don't want to call to check on me because I sound like a broken record. Things that I had volunteered for, and had every intention of doing, I can no longer do. I know people must think I'm just making excuses. I know it's hard for people to understand that I am having multiple episodes of stroke- like symptoms every day. I mean, seriously, who has that?! Well, me. I just hope they understand.

People say, "How are you?" My response here lately, "making it." because that is what I'm doing - making it. Taking one day at a a time. Every day saying, "Tomorrow will be better." one day, I'll be right. Well, today is a little better because I'm able to type this. Maybe tomorrow will be even better.

How often do you say "How are you?" to someone? Here in the south, probably quite a lot. Do you mean it? I think the two most overused and sometimes abused sayings in the south are "How are you doing?" and "I'll pray for you." Well, do you REALLY want to know how that person is doing? Do you have the time to really hear how that person is doing? Do you really even care? If not, don't say it. Try just saying Hi! Are you REALLY going to pray for that person or were you just letting the person know that you hated what that were going through or did it just look good on Facebook? I'm not saying I haven't ever been guilty of these, but after all this, I will listen closely when I ask "how are you?" and will surely pray after I say I will.

I will also not say " if there is anything you need, please let me know" without meaning it. I want to be that friend or relative that you can count on. In the hospital and so bored you could cry? I want you to feel free to call me and say "I just need someone here" or "could you bring me some movies or magazines." or "this food is horrible. Could you bring me something edible?" I can only hope to be that friend if ever needed. If we are going to be sicky sweet to people in the south, let's back it up and mean what we say!

Sorry, I digress. So, right now, I am waiting. Waiting on an appointment. Praying the symptoms don't get worse, only better. I don't care what the diagnosis may be, I just want to get better. But I am most definitely not waiting on God! He has been here with me through everything. Without him, I surely would've broken. The pain, symptoms, medication side effects that have altered my appearance like never before, all of this is bearable because He is with me. He assures me that I will make it through. He gives me the strength that I do have and emotional strength like never before. He pulls me out of my pity party and helps me to see all the many blessings in my life! Even through this, I am so blessed! And to think, tomorrow will be even better!!!

"This is the day that the Lord hath made. I will rejoice and be glad in it." Psalm 118:24

For more information about Hashimotos Encephalopathy

http://www.thyroid-info.com/hashimotos-encephalopathy.htm


http://thyroid.about.com/cs/hashimotos/a/encephalopathy.htm