Friday, May 15, 2009
The Bad News
This is the post that is not so fun. So, if you are the type that doesn't want to hear anything negative...I would not read this post if I were you. :)
A lot of people ask what is wrong with me physically, that it is hard to understand. Imagine if it was hard for others to grasp....it is tremendously hard for me to grasp.
In a complete nutshell...I have an autoimmune disease that is affecting me neurologically (fainting, seizure like activity, hard to walk sometimes) which in turn affects the other parts of the organs. I can break it all down into medical terms someday. But, for right now...that is about as much I want to get into it, because it is so extensive.
My organs have begun to give me a very rough time. Numerous infections...lets see...I just had another staph/MRSA infection where the hospital pricked my finger to test my blood sugar. I left the hospital and there went my finger. That makes the third or fourth Staph infection from a hospital. I get sick often because of my immune system.
We have been going back and forth to Cleveland Clinic, who is supposed to work with UNC. Because that will make the 4th or 5th doctor to tell me that my colon (hopefully partial) will come out. Why? Well, my colon is not clinically "obstructed" But, because the muscles are so damaged that anything trying to come down stops. Because those muscles in there cannot move. So, this has been causing my body to become toxic.
Right now, I deal with daily pain. I have a hard time breathing because out of nowhere my stomach gets as huge as a basketball or larger. This presses against my diaphram, which pushes bile back up my throat. Now, my esophagus is burnt, so is the upper roof of my mouth and my tongue. I can't eat much other than yogurt or a cold popcicle, because of where the part of the colon is causing the traffic jam...the bile goes back up rather than down.
This is so horrible to me to watch my family go through what they are going through. As I mentioned, my husband has an amazing company with the best insurance. One of the hardest things we are going through is that we are drowning in Medical Debt, and we are talking a what a cost of a new BMW would cost. That is ridiculous to me since we have awesome insurance, and we live in the US. What about these people who do not have help? Like my parents. There final days are in ruin over medical expenses. I would give any thing, anything to take that burden off of their shoulders. Because dammit, that is not how we are supposed to go out in this life....in debt passed our ears because of medical bills.
We are moving, as much as I am excited about it. It is out of necessity however. The owners of the house we are renting are going into foreclosure. I pray we get moved out before the yellow sticker gets put back on. We have no idea where the money will come from to get out of here. But, as I told Blake (husband) when we were getting ready to take the contract over "Someway, somehow, this will happen if it is God's will") As silly as it sounds, we prayed over the contract and I let all the worry go. Because somehow as bad as it feels to let go...I knew that God had taken care of us before....he wasn't going to drop us now. I need help in the being scared department. By the way, the contract we prayed over is the house that we got. :)
Sometimes, we laugh...because one more thing happens...like the car dying the other day. If we didn't laugh, we would be heaped on the floor in a mess.
I really shouldn't be on my own, because my blood sugars go into the 30's and technically that is coma time. But, I need to be in my house, with my stuff. So, my amazing husband brings me a insulated bag with my days worth of food and drink and all I have to do is go to the bathroom, right? Right. Well, I am a type A "I can do this all by myself". So, I got up to take my chicken noodle soup back down. I fell down the entire flight of stairs because my legs just went out from under me. Good lord, I am so clumsy. The soup went flying, the bowl went flying...I hit my head and every other body part and I still hadn't made it to the bottom of the stairs yet. I tried to stand and slipped over the chicken noodle soup hitting my head again and my tush bones and lied there in the soup saying extremely foul things that would make a sailor quiver. Not my finest moment. I got up grumpling the whole time at the soup. Like the soup caused this.
Most days, I am not afraid. Because I know that it will work out. But, it is fear how our whole family is going to come out of this. Many days, I am not sure that I am going to make it out of this alive. I get so sick sometimes that I wonder if this is my day. And then, I think of my husband and my children and it gives me reason to fight. I have always been and always will be a fighter. I just hate to see them go through this. I want Blake to have a break from the illness. Working full time, taking care of the kids, and taking care of me, and then working until late hours... I pray every night for him. That he will have the strength at home and at work. In this economy, I worry myself sick that he will lose his job. I can't even go there or I will lose my mind.
Today is a hard day for me. I am having a hard time lifting my head up, I am so sick to my stomach that all I can do is get sick and this part is graphic....throw up blood.. And yet, when I call all of the doctors that i have...they are like "It is probably irritation"
One day, I will be in Medical Therapy. I am applying for the show "Medical mysteries" :)