My blog has been the target of multiple issues, attacks and locked down for months. I finally figured out how to use it again! Hurray! It is an outlet for me. I need to write. I need to do weird giveaways, review movies and books and generally engage in life in a different way. I try to keep this blog positive, but I am struggling to find the positive in my life or to be a positive type of person.
I have also been really sick all year. If I don’t have bronchitis, it is something else. In May I had a routine (for me) procedure on my neck that resulted in severe migraines, and unbearable pain. I tried everything, my doctors tried everything, and I ended up in the hospital for four days. The first night I was admitted I fell in the bathroom. I hit my head and split it open, bled all over everything, and had to have an emergency CT scan. I was never checked as far as the wound goes. No one there cleaned it, or disinfected the area. There were no real checks to see if I needed stitches. Turns out, I did. I had a 2cm gash that was at least 1cm deep. When I got home, and actually washed my hair, it opened up, and I ended up at quick care, but by then, it was too late to stitch it closed. It is still healing two months later. If I had been a few inches off, I could have blown the patch I have in my head because of Chiari decompression surgery, and that would have meant emergency brain surgery. I got lucky. They are not getting paid by my insurance because of the fall so I have been slammed with a bill for $151,00. I am not happy.
Besides the migraine and pain, my left leg suddenly went weak. It just stopped working and has not returned to normal. Tests show that the nerves are intact, my lower back is okay, and nothing should be causing this, but it is. So, I have been referred back to the Mayo Clinic. They are expensive, and it is unknown whether or not anyone can really help me anymore. If that isn’t enough for one year, or one person, my symptoms of dysautonomia have become more severe. I am having trouble eating without pain and other issues, I faint easily, I become dehydrated easily, and my body cannot seem to regulate its temperature correctly. So, Mayo Clinic for review by their dysautonomia team here I come.
Here is the question I have debated for months. At what point to I just find a doctor who will help me deal with this until it is done? I have no hope for a cure. I don’t expect it to get better. I am told often that it will just get worse until it eventually leads to my death. I can try diet, exercise, alternative cures etc. and I do. I have tried multiple approaches, but everything is expensive. My pituitary will never heal, and the medications I have to take to keep me alive because of its failure have terrible side effects. Heart disease and diabetes are the two that are in my future that are unavoidable and will eventually lead to my death. As is, my veins are shot from the steroids. During my last hospitalization I blew through five IV’s, and was subjected to multiple attempts before my doctor just ordered a central line. My weight gain is annoying, not my fault and the cause of multiple problems that I get blamed for. Steroids make you gain weight. I take high dose steroids on a regular basis simply because I get bronchitis and cannot breathe without them. I do not heal without high dose steroids. I will not live without constant low dose steroids. The weight gain caused by these lovely medications causes so many other problems, and is what things like partially collapsed lungs, joint pain and apnea are blamed on.
I have a son with ADHD, High-Functioning Autism, and multiple medical conditions. My husband is a school teacher. We do not own a car, or any assets, which is good considering how many people want money from us. We are in the process of declaring bankruptcy. Do I stop with the expensive medical tests and doctors visits to out-of-state clinics? Do I stop trying to make my life better because there really isn’t a better? Do we instead use the money to spend time with my son while he is younger? Do we save the money for him, and his needs? Do I pursue complex genetic testing for him and does he have what I have? If he does, what do I do? What is my quality of life worth in financial and concrete terms, and what lengths do I want to go to improve it? Even specialized diets, supplements and natural treatments cost money. Do we save for a car, or will we always be bankrupt? Do I sue the hospital that is coming after me because of my fall?
My insurance doesn’t want to cover the visit because I fell in their care. They also kicked me out with no answers, denied me access to an advocate or a social worker that was managing my case, refused to let me see the Pulmonologist that was working with me. I left with a partially collapsed lung, crashing off of steroids, on a medication that they had prescribed that caused hallucinations, severe weakness, fatigue and confusion, and unable to walk because of the weakness in my left leg. The weakness was present in the hospital. It was noted by therapists, but never checked while I was there. Promises to taper me off the steroids were ignored, and when I complained, I was told that I was given pain medication to go home with (which I wasn’t because I already have it). I was there because I was in severe pain. I still am. If anything, it continues to get worse. This week is bad because of the bronchitis, but I am so frustrated. I just want to know why. Somehow that helps. It also determines how I approach the issues. If it is just more of the same problem, there really isn’t much anyone can do to help me. If it is new, there are treatments available. If it is worse, another illness, etc. then I need new doctors and new therapies/medications/treatments. Do I even want to know?
I just want to live my life. I want to home school my son and be his mom while I can. I want to be a wife to my husband. I want to go to Church and see friends and volunteer for a few things when I am up to it. I would love to have the opportunity to work with kids and even to foster or adopt, but that is pretty much gone. I know this is a bit morbid and depressing, but it is my current reality. The crackdown on opioid medications means I only have so many options for pain control. My insurance gets worse every month, and my access to medications that help go with it. I live in a medical marijuana state, but it is bad for me to smoke it, and I have no idea which strains to use. There has to be a better life than this available to me that won’t bankrupt my family, and limit their access to medical care, life and generally anything good and fun. I just don’t know what it is, or where/how to get it.