For 15 years I have been a chronic pain sufferer, dealt with a husband who has severe depression who is at times not compliant with his meds, two children who are high maintenace--and through it all I could always see the cup half full. Manage a smile, and move on--lately I feel like an animal in a cage that is chained down with huge chains to the floor and there is absolutely no way out of my current situation--I am not taliking about my marriage this time--I am talking about my rights as a disable person, I have worked for 35 years and put money away and i cannot qualify for anything-----------except SSI and they are so backed up in this state I will be back to work or homeless before anything happens on their end.
Now that my SSI was not only turned down without the proper doctors reports being considered, my paperwork sat on someones desk unnoticed for 6o days and is just now in the hands of the right person to request me records--"even then"' says my advocate," they now have 180 days to respond" --apparently the guidlines have changed now and they now have 180 days and not 90 to get back to you on appeal--this is all fine and dandy-----I do have a congressional order involved because I wrote my congressman and that has not lit the fire under their butt!
meanwhile--I am venting here so if you want to stop reading, stop now, --husband is loosing it, bills are piling up, I was taken off abx to see if my body's immune system would take over and have not been doing well at all--sleeping like 18 hours a day I am so weak and exhausted.
In the 10 years my advocate for the attorney's office that is taken care of my case she has never seen this type of mistake happen--this is the line I get from everyone--it is as if a little black cloud follows me around and as if it is not bad enmough to be sick--in the past insurance companies don't pay, I am still owed 17,000 from UMUM for ACL reconstruction on my leg which cost me my job 2 years ago--fighting them requesting medical records no one will send them--I am in the middle of a flippin nightmare here that has been 5 years long and won't end!
I pray daily and used to feel some peace inside no matter what was going on outside--today all I feel is hopeless and lost in the most devestating disease I have faces thus far.
I am one who has had this for ever and was misdiagnosed so it is in every organ in my body--4 days off abx and i get a UTI--I am not doing well cognatively, painwise, joints are swelling etc etc--looks to me like I could be relapsing but my doc wnat me off everyabx for 30 days before he decides next step--so here I am in limbo with no money, no frends to speak of, no social life, isolated from the world day after day in my dirty house because no one around here will clean and I am too sick to. I am hungry but too tired to fix anything--On top of that I quit smoking 4 days ago and I want a cigarette!!!!!!!1--
I quess that is enough for the pitty party--sorry but had to vent it somewhere.
thanks for listening
Cathy
Posted by lymemomtooo (Member # 5396) on :
Cathy, hang in there..This is a biddy..I do not have all of the things going on that you have so can't understand it all but my daughter is going thru Hell most of the time..She has severe psych problems with the disease.
Can you still eat chocolate? See if it helps the nicotine thing..
I have been at the end of my rope and the knot was coming undone..But had a couple of friends give me a pep talk today and then my daughter got some good news so all will be better.
I pray the same for you..lymemomtooo
Posted by Linda LD (Member # 6663) on :
Cathy,
I am so sorry you are going through this. You can not do all this by yourself. How old are the children? Even little ones can help a little. Can your doctor get you an antidepressant? I have no background in a lot of your other problems, but are you involved with a church? If there is a church near (or someone you know and trust who belongs to a reputable one) they might be able to offer support--at least take your kids on Wednesday nights.
On a lighter note--I bet my house has been worse than yours. My husband also has lymes and never has an upswing. long story short the basement got so bad (smell--my husband can't smell) that when I finally felt well enough to try to clean it (cat litter everywhere--three worthless kitties) I also found 5, yes FIVE dead mice. We bombed the house at one point when the fleas got real bad and it apparently got the mice. One little mouse had hidden under a rug and was left there so long he was smushed flat by the foot traffic--like a little road kill.
Surely that made you smile/wince just a little?
Hang in there and find a church--that is what they are there for--to help you.
Linda
Posted by griswoldgirl (Member # 5365) on :
thanks for your support--Linda D I have been ill since moving to Charlotte and haven't really found a churh home yet--I am very insterested in going--but not the rest of the family.
It is all a catch 22-most of the time I am too sick to get up and go to Tuesday morning woman's groups which would be a great opportunity to meet other woman and the Sunday service I like at the church I am looking at is at 930 am and I always sleep too late--
What ever steps I take towards wellness and making friends here is up to me and me alone-that part has to be done by me. I have been on iv abx for chronic late stage lyme for 8 months and now off them to see what comes next.
My family is so dysfunctional that a normal conversation cannot be had around here--then there is me with lyme rage seeping up from nowhere due to nicotine fits--thta is not helping--I am hanging in there
Posted by lymesux (Member # 6248) on :
Cathy, I'm sorry its gotten so bad, I hate to see you getting so discouraged.
I wish i had words of wisdom here but my situation is not much different so all I can say is we are all praying for you.
Please try to take care of yourself as much as you can. Betsy
Posted by lymemomtooo (Member # 5396) on :
Cathy, Good luck with the church thing..It probably doesn't matter which one..All can provide some level of help..All can give hope and be uplifting..
One of my good friends gave me a phone sermonette yesterday..And then some good things happened..
She also mentioned a tv preacher named Joyce Myers(I think..I do not normally catch those channels, but have listened to her before)..So you can get some help and not leave home..
I am convinced that there are greater powers in the universe, so hope you can get some confort somehow.
I think everyone has occasional lows. I do not have lyme disease(or so I hope) but just caring for my daughter can really get me down..Lymenet and you and others are always there for help...so soak up some peer support...Get well...We are all praying for you.
Posted by Linda LD (Member # 6663) on :
Cathy,
Do you go to the Jemsek Clinic? I am looking for a dr for my husband and found him.
If you see him he might know a church with lymes who would help you.
I know sometimes my church will take on a family and help them. opps boss...gotta go.
Posted by griswoldgirl (Member # 5365) on :
Yes I see Dr. Jemsek in Huntersville. I live in south Charlotte. I have asked around there about support groups etc and never really been gioven any information. I generally see a PA every time I go, only seen the great Dr. J two times since going there since February.
quote:Originally posted by Linda LD: Cathy,
Do you go to the Jemsek Clinic? I am looking for a dr for my husband and found him.
I have been part of churches that have done things like that for people, but usually the people were members or at least folks who have been going for a while. I am finding it hard to get out of bed lately. It is awful I sleep about 18 hours a day since they pulled me off antibiotics and I feel as if I am swimming in jello!
The church I found that I like is huge and has a lot of outreach programs--I just got to get there.
Then---------get over my foolish pride-it was hard enough to register my kids for operation green santa. I have never done anything like that.
I ususally read uplifting things every day and I have watched Joyce on and off for years--she is a hoot! I am limited right now to reading because my eyes are giving me trouble which reminds me I have to make an eye appointment --thanks for you input and encouragement--let me know what day your hubby will be there and if we have same appointment days and close times maybe we can say hi to each other
If you see him he might know a church with lymes who would help you.
I know sometimes my church will take on a family and help them. opps boss...gotta go.
Posted by Linda LD (Member # 6663) on :
Cathy,
Talked to husband last night about your doc.
Then called him at work and gave him number. Called back and he hasn't called. Ball is in his court.
I think he has secondary things. He never has a good day like I do. I am so new to this, but have watched my husband and me slide. We are making about half what we use to make and struggle just to keep things going...
Then i will have a burst of energy and get caught up only to pay for it later on.
I wasn't too concerned about this--ready to ride it out until my kids were diagnosed--now I'm Momma Bear.
How old are your children? Old enough to take them to church?
Call the church and ask if someone can pick you and the children up. I get so tired I don't want to go to church but then I make myself (or husband makes me--since this started he wants to move in practically :-) I really do feel better if only mentally afterwards.
--thanks for you input and encouragement--let me know what day your hubby will be there and if we have same appointment days and close times maybe we can say hi to each other