this is a journal entry from the rheumatoid arthritis support website i visit daily. i really feel like i can be free there because no one knows me. i still worry about sharing some things on my blog because people i actually know in person read it.
just took my 8th injection of enbrel last night. that's two months in. i'm going to be on it for another 5 weeks minimum. so that will be 13 weeks, three months. and most literature/nurses/doctors say it will kick in within three months.
i'm sure some of you know i'm still not experiencing any relief. any at all. i'm taking supplements including omegas hoping to alleviate some swelling. i'm taking my folic acid. i take a multivitamin. biotin. probiotic. eat veggies and a little fruit. eat limited meat. eat very few moderately to heavily processed things (compared to others, at least. i still eat a veggie burger a week). no bleached flour in the house. organic, vegan, minimally processed sugar. limited cow dairy (mainly cheese). i have no food allergies or sensitivities that have been discovered, expect potentially aspartame. i haven't tested it again yet because i shouldn't be ingesting that anyway. i supplement my diet with fruit and veg juices to ensure i'm getting nutrients.
i don't crave anything. maybe once or twice a month i crave meat, usually a well done burger or a good steak. nothing seems to upset my stomach, but i don't really want to put anything in it but bland stuff - pasta, pretzels, corn tortillas. i eat veggies with a little dip or hummus. apples. i haven't had any real cravings except for meat since i started methotrexate. i never know what to make for dinner because i just don't 'want' anything. awesome husband @_antgas asks me about going out for dinner and i just don't know or care.
i've had trouble with my pain levels. when you take that rapid thingy at the doc's office - the 1-10 scale. i never know how to answer it and i found something excellent on tumblr the other day...
0 - Pain Free
1 - Very minor annoyance - occasional minor twinges. No medication needed.
2 - Minor Annoyance - occasional strong twinges. No medication needed.
3 - Annoying enough to be distracting. Mild painkillers take care of it. (Aspirin, Ibuprofen.)
4 - Can be ignored if you are really involved in your work, but still distracting. Mild painkillers remove pain for 3-4 hours.
5 - Can’t be ignored for more than 30 minutes. Mild painkillers ameliorate pain for 3-4 hours.
6 - Can’t be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.
7 - Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.
8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.
9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.
10 - Unconscious. Pain makes you pass out.
it reminded me that i'm justified in 6-8. i thought i didn't get dizzy or nauseous from the pain, but now i'm not so sure. i do get dizzy sometimes on bad days. i don't take painkillers. i don't even take advil right now because i don't know what my liver is up to. i have pain in the general area of my liver and will have my most recent test results tomorrow or saturday. my pain does not make it hard to concentrate, but i think that's because i am focused and good at compartmentalizing pain. my pain does interfere with my sleep. and as for 8, my physical activity is very limited. i can read and converse without effort but occasionally sharp pain causes me to stop. i have a small stockpile of medications that i shouldn't have but i kept - klonopin (won't help with the pain but will knock me the f**k out), oxycodone, cyclobenzaprine. i never throw out medications because i'm afraid no one will give them to me again. as a recovering addict, none of these medications are easy to come by unless your doctor trusts you a LOT. mine does - for now. i'm terrified that will stop though and i'll be seen as med seeking.
my hands and feel have these odd feelings. kind of cold or hot; full, pressurized feeling. it's not like swelling that i'm used to. i'm wondering if it's more severe swelling than i've experienced. my left wrist particularly has been bad. it is hard for me to roll over in bed. it is hard for me to support myself on my hands or knees. it is hard to get up and down off the couch, the bed, the toilet. my left shoulder is very painful and i feel like it's radiating into my back, which confuses me - is the shoulder pain due to rheumatoid disease or is it a muscle issue?
i am very tired. all of the time. the constant headaches don't help. sometimes i feel a touch of vertigo, i think. kind of like when you're really drunk and your head feels a little light and swimmy? i don't know what that's about, but it's my new normal now.
i do not like my new normal. so many people tell me it gets better, i'll find a good medication. i don't believe them. i spent most of my life wanting to die, wanting to kill myself, struggling with depression and anxiety and ptsd and suicidal obsessions and so many things. just so much. i spent twelve years on and off medications until i found something that helped with my symptoms. i didn't want to die. i sometimes want to now. it would be easier. i know in my head and heart that it isn't true, i know that i won't kill myself. i know i won't. but it doesn't mean the idea isn't appealing. that's part of my disease. i do not know how people do this without medication or without relief. i do not know how people go through medication after medication until they find something that works. i do not know what i'm supposed to do to have a quality of life that is more than sitting on the couch watching cartoons and drinking diluted green tea. dragging myself out of bed to intern for a job i'm going to love. experiencing pain while driving, while food shopping, while typing, while sitting still doing nothing. i just don't know.