I’m so happy to report that my new dermatologist’s office called today to inform me that they can see me next week (March 15th) instead of May 21st. I can’t wait to discuss Humira, different antibiotics, and anything else he thinks might help. I know there is no cure, but there has to be something better than what doctors have been (or have not been) doing thus far.
The 100mg of minocycline is not doing much so far. I guess I can say it’s taken some of the flare down, but I am 4 days into my period and it would have been going down like this anyway. I am taking an ultra strength probiotic, but the meds still make me feel nauseous and dizzy when I stand up. At least I think the meds are the culprit. I’m going to drink water all day and eat a few meals filled with kale, spinach, and turkey today to see if that helps. MMM stir frying up some of that with some lemon and garlic sounds delish right now.
My husband and I had a long talk about things yesterday. He’s feels depressed and sometimes mad that he can’t help me and, for a while, he thought I blamed him for my illness. I never blamed him, but I guess I have been a bit envious that he can get full medical care and free insurance through the VA and I can’t. None of that is his fault and I am very happy he gets the proper care he needs through the VA for his seizures, brain injury, PTSD, Bipolar, and hearing loss.
I sent an email asking my doctor for therapy. I’ve been feeling very depressed and hopeless and know it would help to have someone to talk to about my issues instead of being a burden to my family and husband. I get so tired of the pain, tiredness, and just not being able to do the things I once loved to do. I hate not being able to work out at the gym, cook and clean, go for long walks, and more because of the pain. I miss working, I miss having a purpose in life, I miss helping people when I was a nurse aid. My back pain and hidradenitis won’t allow me to do those things anymore. I can’t do any of those things without frequent breaks or laying down to subside the pain. Before my HS migrated from just my armpit to a permanent residence in my groin, leg, buttocks, and labia majora area….I had just back issues from scoliosis and arthritis. Now, I have both with added right knee pain and hip pain. Please excuse my French, but this is Fucked up! I want my life back! I worked jobs and pushed through the pain until I couldn’t anymore. Not only does my husband need me, but I can’t do the things I can’t do any longer and I am pissed! I need healthcare! I need help!
This brings me to my last point of this post. I’ve done a lot of thinking over the last year that the HS and scoliosis has progressed. I’ve been told by my husband and family/friends for years that I should just file for disability. I am a stubborn woman and refused to do so. I refused to lay down and admit defeat. I now realize this will never go into remission without proper medical care. My medical bills over the years have put me to the point that I need to file bankruptcy and file for disability. Between my HS and scoliosis/arthritis, I’m never going to be a nurse aid again, never going to be able to work a job where I sit, lift, or stand for long periods of time, and I’ll never make enough money to survive if I just work a couple hours a day somewhere. Therefore, I swallowed my pride and retained an attorney for social security disability yesterday. This is not for the money, it’s to get healthcare so that I can get the proper care I need to possibly have better quality of life. Who knows? Maybe in 3-4 years, I can put the HS into remission and get back surgery to be able to work again? I know there is no cure for my diseases, but I am determined to do whatever it takes to get some quality of life back. The life I have now is just not working for me anymore and I am putting my foot down.