Last night I was entirely loopy after taking my new medication. I have no idea what it is doing to my nervous system but whatever it is, it is strong! Aaron kept looking at me and laughing because my eyes kept rolling around and closing and I felt like I was intoxicated. The precious news is that I was able to sleep without the use of sleep aids, which is HUGE. For the last few years I have been unable to sleep without some kind of pill or cannabis. Even still, sometimes I have lain awake even with the help of sleep aids, but this new medication knocked me out. I might have woken up once or twice to use the bathroom but otherwise I was down for the count.
I'm not sure how I feel about it honestly. I started getting teary a bit as I was falling into slumber, because I do not relish the idea that I need so many pills just to function. I get these grand ideas sometimes, of chucking them all out and just not taking anything anymore. I have stopped taking certain ones that weren't really making much of a difference, but my attempts at stopping the important ones only bodes in chest pains or enhanced physical pain. It's quite frustrating. I am in my young adult years and I rely on these supplements to build up my weakened immune system, and these other pills to help combat the conditions I carry. Before I started taking the prescribed supplements I was getting sick with something new every week. Literally. Double eye infections, ear infections, numerous infections attacking my womanhood, colds, staph, etc. It was never-ending. And then I got treatment and whatever they put me on seemed to work.
I'm grateful to live in a country where I can receive medical care, even though at times it has been a dead end road and frustrating. I'm grateful for medication, I am, but I don't like the knowledge that I have to take them. It's a lot. And I really am not a fan of realizing that I will possibly have to take them for the rest of my life. I also don't like not knowing exactly what it is doing inside of my body. Everyone reacts differently to each pill and I am extremely sensitive to side effects now. Anti-anxiety medication worked for awhile and then I started getting really depressed and have rage attacks. Needless to say I stopped ingesting any pills from that family. So now, taking a pill that directly affects my nervous system makes me a bit uncomfortable. I held off on this kind of medication for a long time. In fact it was prescribed in 2010 but I never started it because I wanted to try to do everything as natural as possible. Now I am at the point where I can't ignore my need to at least try it. It's a double-edged sword. I already feel relief from restless legs and being able to sleep was priceless, but I have read that there can be weight gain, swelling of the hands, feet, and face, mood changes, and a plethora of other things. I pray, pray, pray that will not happen. I really do not like taking something that is directly altering my brain and my nervous system, but since that is my illness I don't see much other choice.
When I first got sick, I had this primary doctor and he was very nice....so open and available. He always answered my emails and seemed so very sincere about wanting to help me get answers. At that time I had a kidney infection and lower back pain. After an MRI and a bone scan I was told that I have the back of a 65 year old woman and would no longer be able to work with children. I was devastated. He sent me for physical therapy and when the girl told me to bend a certain way, I told her it hurt. She scoffed at me and told me I was not in pain. Yeah, that happened.
After I stopped working, I could no longer afford my health insurance and the doctor who had been so willing to help me figure out what was wrong literally told me that it was in my head. I went to see him after being up all night in severe pain and misery, throwing up and crying. When I got there I felt like I was on my way to death. He looked at me and told me that he had run all the tests and that he believed that I was unhappy and that when I came to see him I got happy. He basically told me I was faking it.
My heart was crushed. I had thought he was on my side. But he was the first doctor who told me that my very real pain was all in my head.
Over the years I saw doctor after doctor. As the skin on all of my fingers began to bubble and peel off so that I had to wear gauze on the bloody mess, as the pain got so severe that I couldn't do much at all anymore, as I got infection after infection, as I threw up for no reason at all, as I got so tired I could not keep my eyes open, as I bled from places people shouldn't bleed from, as I got urinary tract infections back to back, as I had diarrhea every single day, all day, as I got dizzy and overwhelmed easily, as I started to get numb in my fingers, as my knees buckled when I was walking, as the pain pretty much took over... I continued to believe the problem would be discovered and I would be fixed. That wasn't the case.
Instead, I encountered many doctors who were dismissive and few that actually took the time to help diagnose me. My diagnoses did not come all together, but instead spread out over the next 2 years until I finally learned all of my different conditions, and the main condition that was the most debilitating and the culprit of all of my daily pain and fatigue. I had so many examinations and tests. Prodded in places that never should be invaded. I had several out patient surgeries for my back, and some of those involved not even getting numbed when they stabbed the huge needle in me. I saw many emergency room doctors, an endocrinologist, a dermatologist, a pain management doctor, a GI doctor, an orthopedic doctor, and they even made me have a psych evaluation to make certain I am of sound mind and not just making all of this up. It took forever to see a rheumatologist because I had lost insurance and had to go through the county, and they put me on a wild goose chase, eventually telling me there were none in the surrounding areas who would see me. I ended up finding a Fibromyalgia Clinic online and got donations to be seen there. That was a godsend, as they tested me for viruses and actually validated my sickness. All of this happened while I had no income, and no ability to work. I was reapplying for food stamps and county insurance as soon as it was up. Many phone calls were made, and there were TOO many professional people who dismissed me and made me out to be a loony bin.
It was the most pressing, humiliating, humbling time of my life. There is no grace or dignity when you are bleeding, throwing up, breaking down. Nothing pleasant about being told they don't know what is wrong with you after having things shoved into you, and poked into you, and having so many different doctors and nurses see your most private parts like it is nothing.
I started to get night sweats, peed on myself a few times while sleeping, started skipping my periods, got super oily hair for awhile, started having skin issues like psoriasis and cherry agioma, my blood pressure started getting high, I got hives, benign cysts, my face got puffy... I could go on and on, and the truth is that it won't convey the hellish nightmare Fibromyalgia is.
We endure this, or some variation of this, on a daily basis. I have said before, and I will say it again, there is never a break. Now, I feel blessed to be at a point where I now have some answers and I know of my various illnesses that all work together to further destroy my immune system and nervous system, but it was a long, scary, maddening road to get to this place of medication and a certain equilibrium. Even knowing what I know, sometimes... well, a lot of the time... it is still very scary. There have been different seasons of sickness where I feel very dark and depressed, and other times when I feel very hopeful and determined to have a quality life. It just depends on what is going on in my brain at the time.
The point is this, this is not an easy road to travel. We start off not even knowing where we are going, or even that we are walking on a path, and pretty soon we are well on the trail and we can't turn back. Often times we continue to glance behind or stop and try to figure our how to turn around.... we long for what we knew before, we long for health. We may camp out at that spot for quite awhile because we believe that if we want it bad enough, we may wake up the next day and be off of the trail and back in the land of normalcy. Eventually we may realize that looking back doesn't work, and neither does standing still, so we trudge on because that is the only choice. A lot about who we are gets refined and purified and changed. We lose friends, family, jobs, security, and all of the things that we thought made us who we are. We change. Unwillingly at first, and then tentatively.
I can't say that we ever want to keep going on this trail, because I am still walking on mine. I can only say that walking on is the only thing to do. When the pain gets too much, when the dark thoughts come, when the will to keep living this way drags, we have to just keep walking. The sun will shine on the dark places, but we have to keep going even when it's pitch black and we can't even see where we are stepping. That isolation, that fear.... that is what propels us into being tenderized.
I cannot say I am glad to be sick. I'm not. What I can say is that after nearly 3 years (4 if we count the year before I got sick-sick with no rebound, which I kind of do because I was sick most of that year too) I am an emotional place where I can see how far I have come. I have forged this new life- complete with a cross country move, letting go of toxic relationships, embracing who I am now, and making life-long friendships with some amazing women. I have many moments of insecurity and comparison to the "heathies." I look in the mirror and don't always feel fondness for my reflection. I cry. I get down about my limitations. But that is the reality. That is the dark place. But when the sun comes out in my soul, I feel it all over my being. This sense of who I am now. This feeling of gratitude that I have come so far, and not on my own strength, but on the God who has never let me go, on the friends and family who have pushed me and encouraged me and supported me, on the other, immensely beautiful people going through this around the world.
My walk is not over. I still have a very long way to go, but I can say I am so grateful for this journey and I have discovered how to live again.
