Missie, if found this article that might be of interest on your question:
Post Edited (missie1227) : 1/27/2006 3:52:52 PM (GMT-7)
do you live by yourself? if i'm prying please don't feel obliged to answer.
having someone in person who really "gets" it, is a big help. like my friend, he's about 49 and has end stage kidney failure and nephrotic syndrome. it's a death sentence he's been living for the past 10 years. but when we talk, he gets it. he gets how it feels when doctors throw up their arms and say "i give up" or "i don't know".
it's very discouraging to have medications and procedures fail. we put so much hope into them, and then there is a feeling of almost abandonment? you know? why are so many people so much more successful with this?
you've been through a lot of trauma. you're in a lot of pain.
to me, when i'm at my worst...days where it takes 2 hours to get out of bed and all i can do is just get back into bed. or the time it took 10 tylenols and 8 hours to get from the bedroom to the kitchen...it's sickening. it's so brutal sometimes that it feels like punishment. not very fond of bedrest 5 out of 7 days a week myself. and 5 days is being generous! but i've learned and am still learning to take it by the hour. perhaps in a few months, maybe even next year...it won't be like this. i refuse to lose that optimism.
when was the last time you had a bearable day? or a day where you felt that you were able to manage your condition?
i have to say...majority of docs dislike taking on complex cases. been there too!
do you have access to specialty hospitals?
what about better pain management and physical therapy? a visiting nurse service? or even a visiting physical/rehab therapist?
do you have any sort of medical coverage?
write back when you can.
as you might tell, i don't sleep well! "The rule of the roost"...one of THOSE eh? let me guess, hubby is a.) only child b.) Italian family c.) the only child of some success or d.) in closest vicinity ....did i get it? ah, it was a crap shoot, so i could be wrong on all 4. this "responsibility" with the mother is taxing/stressful....a burden? you can do without right? there is no where else for her to go? no other family...or even a home health aid to care for her? that's a big issue, and i can see this being very emotionally tolling on not only your health but more importantly, your well-being. hmmm, you do say he is very helpful to you. does it make it worse the times where you both are apart?
no thank you needed in my taking interest. it's what i do. when my body catches up with my mind...i have a nice career in nursing awaiting. when in school, i always was the person who had the most inpact on patients. mainly because i've been on that side of the bed. and in being ill to a point where i could not walk when this all began...i do not think i would be the caregiver i was. with sickness and disease, especially of chronic progressive types....you gain strengths and knowledge that the person next to you might not have...nor ever have. that has got me through some of the worse roads through illness.
medical coverage is something you can look at as a blessing. hey....we're diggin' for gold here, so we'll take anything! be secure in that & also every now and then, think of how much harder THIS would be without insurance! Oy! i do this. even though my rheumatologist and GI do not accept my Medicaid, @ least i'm OK for my PCP & if need be, the hospital.
i understand when you say "if i were able to work....where i could support myself". this in itself is a major life change. i was always able to provide for myself and was always independent and worked and was able to pay for the mortgage, bills, everything and have a life on top! not the case now...when in reality not even my boyfriend knows i am on state assistance. but when you cannot work, get denied disibility, run out of savings....where else do you turn? i hate it. i never thought it would be like this. as you never thought you would have been in that accident! it's something we didn't choose.
ok...so you see the rheumatologist on the 7th. sit and talk to him about Enbrel injections for AS and PA. it will help slow the progression and perhaps even help with the rest of the arthritic conditions. Enbrel, if it did one thing...was it DID almost completely ease the AS back spasms and pain and all the other joys that go along with it. however, it did not help me with any other joints or RA. was on it for 1 and 1/2 years.
like my PCP said, "how can you not be depressed?" there's a lot of truth in that. i've avoided antidepressants. took Effexor and Prozac at the begining and it made me feel more depressed! go figure. i do believe though, that finding the right antidepressant is important and i do believe it helps with chronic pain and fibromyalgia.
starting with maybe the possiblility of Enbrel might be worth a shot, no pun intended!
you remind me of this girl i once knew, Stephanie. i went to school for Ultrasound right after highschool. she was in my class, and she, 9 months prior, was in a very bad motorcycle accident with her uncle. she was 18. and basically...built of steel. her whole spine had to be rebuilt, hips, ribs all of metal and bolts...lungs collapsed....almost died several times. that is a lot to handle. you've been through the mill gal!
be careful with the medications you are on. the restoril, xanax and pain meds all cause your central nervous system to become depressed...thus leaving you feeling not so great. but it's a catch 22 huh? medications have side effects...and then there are more medications to treat those side effects!
are you content with your current doctors? that's vital. otherwise, things will remain at a plateau.
on leaving (sorry to others who are reading this as i'm lengthy...but for good reason)...it sounds simple, but when bedridden...my cat is my savior! and i cherish the FoodNetwork! and also HW! and that every day that passes, is an opportunity for change and to learn. also very grateful i can on most occassions...wipe my own rear! LOL. missie...we're all rowing the boat along with ya! goodnight. erin
quality of care? i can see that being a BIG issue. when i had consults in NYC @ the Bone & Joint Disease Hospital...they were definitely more on top of things than my doctors in my county. now....i ask to find out where did they go to school & where do they do their research and teaching and so on.... seems like the docs who went to and performed @ one time or another out of Manhattan are more with it than others. if i had never went to NYC docs, i would have never started the TNF medications!
in the city where i live, if you're like under the age of 70 the doctors have no clue what to do with ya! so picture a 16 y/o kid at the time coming in and complaining of joint pain!! all my bloodwork was abnormal and they still told me to ignore it..."i would most likely get RA or some arthritic condition when i get old" ...in quote...
well, their definition of "old" turned out to be 21! everything shut down regarding the joints. and then they started to take it seriously. a "complicated case" of course, we all heard that before. but over the last 10 years i found 4 great doctors in all....and 3 of them i'm with now & at least trying the best route to get this in some sort of remission and get me to where i can be alone and fend for myself and have some sort of career for a while.
it's been a long hard road and still is. and making the best with what i've got.
thanks for sharing what's going on @ home. you're right...it would be nice if his mom was "alright" and was lovely to you and was able to be your friend. but, "we're not in heaven!"... as my grandma would say. "this is life". she's funny. she's 87 and she gets ticked off by "the seniors" LOL. it's hysterical! she can't stand "them" especially if one of "them" is driving. i hope to be like her when & if i get to 87!....spry and spunky and cussin' up a storm! LOL.