Now that I have been out of work for 2 years, our bills have made it necessary that I need to get a job. The problem is- I don't think I could hold a job anymore. I used to do retail selling or lactation counseling, but on MTX and almost a year on prednisone, I am afraid to work a job that puts me so close to public. I'm not qualified for much else.
I don't have extreme pain, but I have moderate pain and irritation nearly all the time from RA. And I am also Bipolar. On the whole I am much more stable than I once was. I have learned coping techniques, and I am happy with my Bipolar meds on their own. I do have swings, but not nearly as pronounced or as often as I used to have. Some are worse than others. The RA meds are still a work in progress.
My last swing brought me 36 hours without sleep, and another couple days of very little sleep. Lots of fights, and I bought and read a book series that I knew I couldn't afford within that time. Afterward, I spent almost 3 days in bed. I didn't eat, and I didn't sleep, I was just there. After 3 days I made myself get moving, and after a few days of pushing myself through the fatigue I felt better. While I am better than I was before treatment, I am this way without the stress of employment. No employer would tolerate someone to flake out of work for 10 days or more in a row several time a year.
Because of the bipolar tendencies, I am nearly unable to make subjective decisions concerning the pain I feel over time. When I am in a high cycle, I can't seem to remember any pain. I don't seem to remember being depressed. I feel like I must have been over exagerating my intolerance and can do without most treatment. I will downplay symptoms in my own mind, and overstress my body without seeming to realize it. When I am in a low cycle any discomfort is excruciating and I am unable to cope with it. I can't remember ever feeling better, and I have no vision that it will ever get any better. I might not physically feel any worse than I did in a high, but I am unable to cope with the pain. Fatigue causes me to stop moving and joints become more painful. It all depends on when you speak to me as to how I feel I am doing- even if the situation is exactly the same. I must depend on my family and friends a journal to give perspective to the situation.
The worst part about all of this is the side effects and how it affects me mentally. My word recall is terrible. I sometimes just give up on what I want to say because I can't remember how to say it. It drives me crazy. Sometimes when I drive I forget to turn when I need to turn, or just pass by where I was supposed to stop without even realizing it. A few blocks later I figure it out and have to turn around and backtrack to where I wanted to be. Sometimes my car seems to just go on autopilot to church when I really wanted to go somewhere else. I get halfway there and have to turn around. I'm starting to think I should avoid driving, but how can I avoid it? I can't seen to make my brain do math. The concepts that my 2nd and 5th grade children are learning are hard for me to get my brain around. I used to love math, right up till I started some of the medications, now I can't do it without extreme difficulty. Also, be able to complete a series of tasks I must make detailed checklists and refer back to them consistently to remain on task. I have dry erase boards posted around the house to right TO DO lists of that day's chores and needed tasks. I check them off as they are done, and add to it as I come up with more. If I go out, I write the list out and carry it with me, checking it throughout the day. My calender is a lifesaver since I forget appointments without it and constantly overbook myself.
Because of the clinical aspect of both RA and Bipolar I don't have much in the way of actual times and locations of when I became "disabled". There is no "line in the sand" that I crossed on a particular day. I have lost no jobs over these conditions, but I have gotten worse over the 2 years I have been without a job. I could possibly find a job that I could do, but I would need a degree to get it, and without being able to concentrate in simple tasks, unable to handle stress (aggravates both conditions), unable to predict how much energy I will have in the future weeks, prone to extreme fatigue or strange decisions, I cannot foresee me passing many classes.
With just one of the conditions I think I would be able to "push on" to get a job and make money, I did it for over a year before I left my job to go to school. I pushed through school with Bipolar and learned great coping techniques from it. I don't believe I could do it with both conditions. I feel like I can barley get through being responsible for my own children sometimes. I have to rely so heavily on friends and family I find myself refusing to ask for help when it is not absolutely needed, because I absolutely need their help so often. I don't want to become the "needy friend".
So, after all of that to explain my position, do you think I have a case to get labeled as "disabled" and in need of a monthly check? Has anyone else done it? What kind of opposition did you face? I see it as swallowing a big chunk of my pride to say that I am unhireable and in need of public support. I don't see that I have any other choice. Do you think I should go ahead in my case? Just tell me I am not crazy.
Bipolar treatment-Lamictal, 200mg, Mood stabelizer, daily(main side effect: brain fog) Bipolar treatment-Cymbalta, 40mg, Antidepressant, daily(main side effect: GI upset, decreased clotting, insominia) Anemia, Fatigue treatment- Iron supplement, 65mg, daily(main side effect: constipation) Insominia treatment- Ambien, 10mg, daily(main side effect: amnesia eppisodes between taking pill and falling asleep) Mania treatment- Alprazolam, .25mg, Very rarely(main side effect: fatigue, slowing of thoughts, depression of CNS, can't take ambien or vicodin when on it) RA treatment- Plaquenil, 400mg, daily(main side effect: GI upset, decreased clotting) RA treatment- Methotrexate, 25mg, 1X weekly(main side effects: hair loss, stomach upset, mouth sores, sore muscles, fatigue, brain fog, compromised immune system, decreased Folic Acid absorption) GI upset treatment- Leucovorin Calcium, 10mg 1x weekly(main side effects: ?) Folic Acid defintioncy- Folic Acid, 1mg, daily(main side effects: ?) RA treatment- Prednisone, 8mg(and decreasing...)daily(main side effects: increased manic eppisodes, constipation, brain fog, bone density degeneration, compromised immune system) Multi-mineral Supplement (main side effects: constipation, GI upset) Constipation treatment- Docusate Sodium, 200mg, daily(main side effects:?) pain control- Motrin, 800mg, PRN Q6hours daily(main side effects: GI upset, decreased clotting) Pain Control- Vicodin, 5-500mg, PRN Q12hours regularly (main side effects: brain fog, fatigue)