Dear Doctor,
The anticipatory insurmountable pain levels prevent me from participating in my life right now, and I can't do this anymore. So I am writing in the hopes that we can get on the same page, as to how bad my pain is, and has gotten just by doing basic things like, having a friend over and being a good hostess, with all the anxieties that come with being around others (their judgments, possible emergency that could arise, the possibility of them backstabbing me, gossip feeding, etc.). At this time everything I do from dishes (with breaks between every 2-3 dishes loaded or handwashed), to bathing, causes me insurmountable pain levels and I need help. I need to have my safety net back. Where I know relief from the pain is always there for me when I finish living my life for the day. A nice warm bed to sleep in at night and a leg up during the day to keep me going strong through my day filled with agony.
Currently I am unable to carryout my daily tasks because when I do I face insurmountable pain with nothing to fall back on to bring my pain levels to a level that is manageable. Gabapentin helps take an edge off yes but no where near comfortable.
I am unable to work, engage in social activities, exercise, I am able to sleep once I get to sleep because my narcolepsy steps in and takes over because the pain is all I can think about, pain is here because of what little participation in normal living I did in the day, even bare minimum participation. I am unable to shop without a motorized cart and due to the insurmountable pain with bare necessities being completed, that is just out of the question for me right now. I can do dishes with breaks between 2-3 dishes where I go lay down for 5-15 mins between loading 2-3 dishes or washing them by hand. I cannot do laundry as there is no bed to lay down on at the laundromat. I can drive short distances (ride too.). I have an app that keeps track of my medications for me. I barely do stairs they cause my pain to sky rocket.
My pain levels make me irritable and unpleasant to be around, so, I have moved into the apartment above our garage to transition out of my own, soon as I can establish income of some form, Then I will be able to move where ever I need to so I can get the help I need. I can't even begin to imagine that being me going to a job with the state of my pain even, then factor in my mental health also, and even with my safety net in place I don't think I could do a job ever. I don't have enough work credits to get disability and I can't work to earn them, so I don't know what to do, so I need to talk to a disability lawyer I guess, and hope they can help me. The reason for my leaving is because I feel I cannot be around my family while I am this irritable and unpleasant to be around and my oldest two sons attitude towards my mental health and my pain is just teenagers I know but, it hurts none the less.
When asked to do something I feel like a mathematician solving a huge math problem, that sum could make or break my relationship with this person. The pressure is insurmountable and most of the time I am forced to decline because the insurmountable pain levels I'd face if I do participate in their activity they want to do with me. Be it go to the park with my family, or a concert that we won tickets to, or go to family or friends houses, or to run errands, or to go shopping and embarrass them using the cart looking all healthy getting on it. Ugh the judgments so overwhelming! so you see I cannot participate in my life because of this extreme pain I am facing.
At this point I'm ready for a pain pump. I feel like I'm never going to get in shape because it feels like I take one step forward and three steps back.
I just want to feel something different for awhile and have a much needed and deserving break from this constant emergent pain. Is that too much to ask for? I do not want to die from this pain. I want my life back. Fix the issue would be ideal but I will settle for a better mask.
Thank you for your time, understandings, sympathy, and much needed help,
Sincerely,
Beka
p.s. in case you wondered what hurts, I had many abdominal surgeries including L5S1 fusion, so my hips hurt like there is something inside them grinding down my joints I guess maybe more like razors inside trying to escape? they pop and pop often, so my S.I. Joint maybe? my dimples in my back hurt really bad, and all along the creases of my hip bend I don't know what else to call it? and the bones at the base of the buttocks all the way up to my dimples as well hurts and requires massages throughout the day. It is actually from the dimples down to my mid thigh requires this treatment. And my PT therapist I seen in the hospital recommended Physical Therapy and my two shoulders have bursitis in them. I would like to become paralyzed from bottom of the ribs down but I can't hardly hold a cup of water in my hand without getting agony from the bursitis so manual wheelchair would be out of the question and my inability to move about myself would be next to impossible with my shoulders the way they are. I also have torticolis when I become severely stressed and triggered. My muscles tend to dance at times like twitch...without doing something I do on a regular basis these muscles would spasms in the form of a Charley horse...have you ever had a Charley horse in your face? I wouldn't recommend it, speaking from experience. And I am required to quit said something to be able to get the help I need, but they fail to realize how bad my body has really gotten, but kinda they do if they look at the hospital records I am sure they documented my agony at least I hope they did. It is pretty sad when I have to push through just to do basic needs, I seriously need some help here. Please if you can't help me pass this on to someone who can. Thank you.
