The Struggle is Real
This is a post that I really don’t want to draft. It is a huge blow to my ego, my pride, and my well-being.
I had been managing my Fibromyalgia and Rheumatoid arthritis fairly well, that was until costochondritis had to show its freaking ugly face and wreck the good times. The costochondritis is really kicking my ass, and the medications to combat the pain from it are also wreaking havoc on my body. With the Fibro and RA, I know what to expect and besides the days when I have a flare-up, I can cope with it all and manage to be somewhat productive and feel human(ish). But with the costochondritis, the pain is so damn annoying and the medications make it worse I think. I tried OTC pain relievers and the costochondritis just laughed at them and said thank you for the candy. I want to avoid narcotics, for the simple reason of their addictive properties and I don’t want to add yet another problem to the delicate mix that is my life. So my doctor put me on Tramadol, three times a day and that manages the pain pretty well on most days. And on the days I have a costochondritis flare, I have Hydrocodone to take the edge off. I have been managing the pain fairly well, it is just all the side effects of the medication.
I get really annoying dry mouth, that feels like I have a mouth full of flour, and the only thing that seems to help with that is a nice ice-cold Coke, but that has its own issues. I also have some uncontrollable shaking of various body parts throughout the day. I have periods of minor nausea and loss of appetite, in fact, I’m down 40 pounds this year (I started taking Tramadol in early Jan). Hydrocodone has its own issues of course, and the biggest is being totally spaced out for a period of time. I try to only take the Hydrocodone in the evening on days that I need it, so I can actually get to relax and maybe do something without crying in pain. That allows me to calm down before bed and fall asleep and get some much-needed rest.
I also have some fun side effects from the Humira injections, which are hoarseness and loss of voice. I’m really hoping that will go away after a few more injections, if not I might have to stop the Humira, which I like over Enbrel.
Now back to the struggle. Some days, I’m a total space case and I can’t remember the names and faces of people I work with and of family members. Some days I’m uber tired and I can’t wake up no matter what I do, in fact, today is one of those days. I stopped this post for “a few minutes to close my eyes” and I woke up 30 minutes later, oops. I guess it could be worse, so I keep marching along the best that I can. I hope the costochondritis goes away and I get off the damn pain meds and function like a person again.
I’m so torn in my mind, I want to be able to get along day to day, without all the medications I have to take and I have actually “detoxed” twice, where I went cold turkey without my medications for a week. It is very difficult, extremely painful, and besides sucking to all holy hell, it really isn’t good for my body, but I let my pride get the best of me and I say screw it. I don’t know if that is me in general or the damn Jarhead in me, but…..
I try extremely hard to keep my pain to myself, keep my struggles to myself and I will actually hide my pain from my family. I have even lied about being in pain. My family doesn’t deserve to have a father/husband that can’t handle a little pain, they deserve better than that. And I want them to have better than that. Those are the times that are the hardest for me. I don’t like not being truthful t them, but I hate seeing the concern on their faces even more. So for the most part they often don’t know the real pain I’m in. I know that they don’t read my blog so my secret is safe.
To make things worse, I have to live with the knowledge that I gave my beautiful 20-year-old daughter fibro and likely RA. She is way too damn young to have to live with this shit and I’m the asshat that gave it to her. if I knew 20 years ago that I had fibro and RA, I would have insisted that we don’t have any children. I love my children and I love being their father, but it is so difficult looking into my daughter’s eyes, knowing that I’m the reason she is in pain and will have to live her life in pain. She is struggling with the thought of having to take hydroxychloroquine, which is the path that her rheumatologist is leaning toward for her. We have the same rheumatologist so I know she is in good hands and that does provide me a little comfort. I pray that my daughter does get RA or costochondritis. Especially the costochondritis, which seems to be a real ass-kicker for some reason.
I think for me my biggest struggle isn’t the fibro or the RA or even the Costo, it is the knowledge that I screwed over my daughter’s life and that there isn’t anything I can do about it. Trust me, I have toyed with the idea several times of just disappearing, but that doesn’t stop my daughter from having the issues she is having with her Fibro, it simply just removed me from the picture, but the disease is still there.
Alright, I have managed to ramble on in self-pity for a while now, sorry about that, but it does feel a little better to get that off my chest.
When I got home from work last night, I was coughing and feeling rough. So off to a doc in a box and they said that I still have an ear infection and bronchitis, so more steroids and a different antibiotic. I guess I don’t get to restart my Humira injections yet. I’m very curious to see if the hoarseness returns. I haven’t had it for a few weeks now.