Sunday, December 21, 2014

A huge difference.

   The stomachache is all gone now. I will probably have to take these stomach pills for the rest of my life, but I don't care. This new medicine, Fludrocortisone, is a life saver. They even put my 7 year old daughter on it. It has made the biggest difference in my life and in hers. We are new people. 

   I am going to try and explain why. 

   First, the problem was chronic brain hypoperfusion. There wasn't enough blood getting to enough of my brain, all the time. The official diagnosis is Neurocardiogenic Syncope. It was also called orthostatic hypotension or orthostatic Intolerance. I don't know if it caused permanent damage. I am going to ask for some scans soon to check. I am sure this has been going on since I was 6 or 7 years old and just getting worse every time I got sick. The last 7 or 8 years were the worst. 

   I was an angry, irritable, and mean person. Constantly. No one liked me, not even my kids or husband. For lack of a better word, I was a bitch. I can see that now. I was talking to my husband about it the other day and he said that it felt like a weight had been lifted off of him and everyone in the house. I was making them miserable. He admitted that he had been at the end of his rope with me and he was just barely hanging on until things changed. 

   Before, it felt like I was trapped inside my own head. I wasn't connected to my eyes, my ears, or my skin. Everything was on the other side of this huge wall of fog or water. Everything made my head hurt. The sound of my children laughing, music in the van if my windows were rolled up, the sun through the window in the morning. Heaven help us if someone yells, screams, cries, plays loud music or flicked the lights on and off. Instant meltdown on my part. I was crazy. It irritated me if the dishes were put away even just the littlest bit wrong or my chair was moved just one cm. I would fly off the handle about everything. Everything felt like a personal attack, everything felt like PAIN inflicted on on purpose. Granted part of that might be the PTSD reacting to a perceived threat. But I was treating my children like the threat, like they were intentionally hurting me. I lashed out at everyone constantly. 

   I did not enjoy anything. Ever. I did not smile or laugh. I did not like the company of people or my family. 

   Some other things I noticed was that I had a problem using words. They would sound right in my head but when they were said they were the wrong word or it was pronounced wrong. I also had a hard time finding the words. Filling out paperwork exhausted me. 

   It would take me 30 minutes to do the dishes. I would start hurting after 10. The pain was distinct. I have read it referred to as "coat hanger" pain, the area between your shoulder blades up the back of you neck. It would hurt so bad, my hearing would get dim and my brain didn't want to process anything else. Heaven help you if you asked me a question or talked to me while I was washing dishes. I could not pay attention to the dishes and the person at the same time. Now I can do 30 minutes of dishes, wash the counter and table, and sweep the floor, without the pain or confusion. My kids can ask me questions while I work and I can form intelligent replies. Just being able to hold conversations with my kids is a huge deal. They were starved for attention. 

   Speaking of attention, my libido is back. I feel more confident and secure in myself. 

   I am sure there are more differences I could name. Maybe I will come back and do that. 



Saturday, November 29, 2014

One thing after another.

I had just started feeling better. Better than I had in years. And then BAM! Another thing. Always one thing after another.

I had started having a stomach ache every night after dinner. The rest of the day had been fine and then bad stomach cramps. It hurts the most right under the bottom of my sternum. Pushing in on it made it feel better. I thought maybe my digestion had slowed down because I was throwing up every night. I thought maybe I was constipated so I tried stool softeners and miralax. That wasn't it either.

It went this way for about 3 days. The 3rd night it got so bad that I had to ask my dad to drive me to the ER. I was in a lot of pain.

The ER doctors were real nice and one of them even knew about EDS and NCS. I was surprised. They gave me a GI cocktail. It included Lidocaine to numb my stomach and several things to coat it and reduce the acid. They said if it worked then we knew it was my stomach. It didn't help. I was still in lots of pain. They were going to have to give my iv meds. They gave me dilaudid and zofran. That did the trick. I finally had some relief from the pain. They sent me home with lortabs, prilosec, and another med that coats the stomach. No one did any tests other than a few blood tests to rule out gall bladder or liver issues. All I know is that they think it is an ulcer or gastritis.

I have to wait until after the holidays now until I can call the GI and make an appt. If I don't take the pain pills I get real bad pains and I throw up. I have a feeling the new med I started contributed to it. I don't think I was eating enough food with it. Or eating the right kinds. I keep forgetting how sensitive my body is.