The Chronically Ill support Group

[eclectics]

I have chronic illness, i have blood disorder where I am prone ot blood clots, I am on blood thinner for the rest of my life. I also have a chronic back condition. It is ironic about people sick of beign sick. I know how that is, I go thru it alot with my blood problems, this year alone I have been in the hospital for a week already. ................. But I will tell you my best medicine is my beagle sulley. I had been a care taker for the last 15 years, so like from the time I was 15 til 30, then I lost my family and have been alone for the last two years. And my two beagles, sulley and zoie are the ones who have gotten me thru the pain and stresses of continually being sick
Stacie

Animals are great! And they don't talk back! Well, I take that back. One of my cats actually does. I know how hard it is being a caregiver, especially when you don't feel well. My 87 year old mom lives with me and she pretty much can't do anything for herself anymore. It's very difficult, but you do what you have to do. Thank God I have some help. God only gives us as much as we can handle. Sorry to hear about your family. My friend is on cumidin (sp?) and is constantly being checked. Maybe someday they'll find some meds that are easier to deal with. Hang in there!

 

[Mickey527]

This is a great topic. I don't feel so all alone anymore.
I started out with breast cancer. I was stage 3 grade 3 and had a total mastectomy. They did a TRAM flap during the mastectomy using my stomach to rebuild the breast. The cancer was too close to the chest wall so they didn't get enough clear margins. I had to go through chemo and radiation. The chemo caused neuropathy (numbness of the extremities). My feet are totally numb and I have no feeling in my pinkies or ring fingers.
I got lymphedema in my right arm because they took out all my lymph glands that had cancer in them. Now I have to wear this compression sleeve every day and go to PT once a week to have the lymph fluid manually drained from my arm.
I fought my work to take me back because they gave my job away a month before I was to come back. They didn't tell me they needed me so they were in the wrong. But they took me back nights when I used to work evenings. Night shift is killing me.
I was diagnosed with fibromyalgia last month and the pain is so intense sometimes. Sometimes I have no pain at all, but then when it hits, wow!
I also have Sojgren's syndrome, it is terrible sometimes, imagine the driest your mouth gets when you are getting a cavity filled and triple it. NO matter what you drink to moisten your mouth it only lasts until you swallow.
I am on two kinds of meds for the neuropathy but they knock me out. I am tired all the time anyhow and they have to medicate me to take away the little energy I had.
So now my doctors are telling me that working nights are making my symptoms worse and I will not get any better. I go on Long Term disability on March 1.
The Bad The Good
Breast Cancer TRAM flap- I have a really flat stomach
neuropathy I'm blank on this one
Disability More trips to WDW
Disability pay no money for trips to WDW

Well I got some free flights from saving Wendy's coupons and I booked a trip to visit my sister then we are going to WDW for a few days in April. I also booked a birthday trip for the end of May. So even though I am in pain I am hoping the sun might make me feel a little better. I am not looking forward to the snow that we are expected to get tomorrow, the cold makes me hurt more. Peggie

 

[Shugardrawers]

Looks like I have to quit my job. I really don't want to, it keeps me somewhat active and it's not a bad job but I really don't have a choice

I work as a merchandiser for a major greeting card company. I go into our Walmart and straighten and stock the card dept including gift wrap, party items and gift type items. It's a LOT more than it sounds like.

Supervisor calls DSis last night (we are co-workers) and gives her a long laundry list of complaints about the way we do things and that she's tired of us being lazy and having to come behind us to "clean up our messes". DSis is outraged and defends herself saying she busts her butt there and even picks up my slack and works my shifts when I can't. Supervisor tells her if she's doing that much that I don't have any business working there. Conversation keeps going with her laying more and more critisim on DSis about the both of us. It ends with DSis adamant that she will help me this weekend but will not return to work after that. Of course, DSis calls me immediately as I'm sure supervisor KNEW would happen.

I spent about 1/2 hr on the phone with DSis and supervisor never called me so it becomes even more obvious she expects her to pass the info to me. After hanging up with DSis I call supervisor and ask her WTH is going on. I tell her DSis is so upset she's not planning to return and remind her that we were hired as a team. (a bit of background, I was hired first by supervisor's boss who was fully aware of my condition. She knew accomodations would have to be made and she hired DSis to do that. If I'm not up to working a day, DSis goes for me. She does the heavy lifting and stays if I can't. They both know I can't physically keep up with them. Again, they KNEW all this when I was hired. I heard boss tell supervisor all about this. Boss has recently quit). Supervisor then does a COMPLETE 180 and denies she said most of the things DSis says she did. Says she never had a problem with the work we do other than some minor communication problems. She says her new boss and district manager came in and had a hissy over things not being done and that THEY are the ones having a problem with us and that THEY are the ones who said I shouldn't be working there. This all directly contradicts what DSis told me and I believe DSis. She loves this job and would never just walk out on it without a darn good reason.

Anyway, I call DSis back and tell her I got the complete opposite story. My guess is the real story is that district manager and new boss came in, complained about some things not done and supervisor turned it all on the easy scapegoats who weren't there. As I said, we aren't given anywhere near enough time to complete our work. The company has recently shaken things up and given us more work and cut our hours. It's not brain surgery to figure out what's going to happen. Former boss told us to do what we can and hopefully the company will realize we can't do it in those time constraints. We all knew we'd hear about this eventually. What we didn't expect was for DSis who works like a maniac to take the brunt of it and for my health to be blamed. So in the end, I convince DSis to stay at least through Weds since I'm scheduled all those days and it's the busiest time of year until Thurs when it will drop off considerably. She doesn't think the limited hours are worth the aggravation after that and Weds is her last day. That means it's my last day too. There's no way that anyone else would be willing to pick up the slack that DSis does for me. It's not THAT much but enough that anyone else would be annoyed.

Dh says we need to look into the Disabilities Act since all limitations and necessary accomodations were made known before I was hired.

So that was MY evening Guess Weds is my last day too.

 

[eclectics]

Looks like I have to quit my job. I really don't want to, it keeps me somewhat active and it's not a bad job but I really don't have a choice

I work as a merchandiser for a major greeting card company. I go into our Walmart and straighten and stock the card dept including gift wrap, party items and gift type items. It's a LOT more than it sounds like.

Supervisor calls DSis last night (we are co-workers) and gives her a long laundry list of complaints about the way we do things and that she's tired of us being lazy and having to come behind us to "clean up our messes". DSis is outraged and defends herself saying she busts her butt there and even picks up my slack and works my shifts when I can't. Supervisor tells her if she's doing that much that I don't have any business working there. Conversation keeps going with her laying more and more critisim on DSis about the both of us. It ends with DSis adamant that she will help me this weekend but will not return to work after that. Of course, DSis calls me immediately as I'm sure supervisor KNEW would happen.

I spent about 1/2 hr on the phone with DSis and supervisor never called me so it becomes even more obvious she expects her to pass the info to me. After hanging up with DSis I call supervisor and ask her WTH is going on. I tell her DSis is so upset she's not planning to return and remind her that we were hired as a team. (a bit of background, I was hired first by supervisor's boss who was fully aware of my condition. She knew accomodations would have to be made and she hired DSis to do that. If I'm not up to working a day, DSis goes for me. She does the heavy lifting and stays if I can't. They both know I can't physically keep up with them. Again, they KNEW all this when I was hired. I heard boss tell supervisor all about this. Boss has recently quit). Supervisor then does a COMPLETE 180 and denies she said most of the things DSis says she did. Says she never had a problem with the work we do other than some minor communication problems. She says her new boss and district manager came in and had a hissy over things not being done and that THEY are the ones having a problem with us and that THEY are the ones who said I shouldn't be working there. This all directly contradicts what DSis told me and I believe DSis. She loves this job and would never just walk out on it without a darn good reason.

Anyway, I call DSis back and tell her I got the complete opposite story. My guess is the real story is that district manager and new boss came in, complained about some things not done and supervisor turned it all on the easy scapegoats who weren't there. As I said, we aren't given anywhere near enough time to complete our work. The company has recently shaken things up and given us more work and cut our hours. It's not brain surgery to figure out what's going to happen. Former boss told us to do what we can and hopefully the company will realize we can't do it in those time constraints. We all knew we'd hear about this eventually. What we didn't expect was for DSis who works like a maniac to take the brunt of it and for my health to be blamed. So in the end, I convince DSis to stay at least through Weds since I'm scheduled all those days and it's the busiest time of year until Thurs when it will drop off considerably. She doesn't think the limited hours are worth the aggravation after that and Weds is her last day. That means it's my last day too. There's no way that anyone else would be willing to pick up the slack that DSis does for me. It's not THAT much but enough that anyone else would be annoyed.

Dh says we need to look into the Disabilities Act since all limitations and necessary accomodations were made known before I was hired.

So that was MY evening Guess Weds is my last day too.

That's a shame. I thought Walmart was sensitive to people with disabilities. Maybe there is someone higher up the ladder you make an appointment with and have a good talk? These retail regional managers are all from the same cloth. I have had firsthand and secondhand dealings with them. They march in, point their fingers and spout off about all the things that need to be done, yet they cut the workforce to the bone and reduce hours. Then they can't understand when things don't get done. It's the same with every big company. They must all go to the same "clueless" manager school! As a stop gap measure, maybe you could try talking to the store manager if you are on good terms with him or her. Hope things work out!

 

[Shugardrawers]

I don't actually work for Walmart. Walmart leases out there card dept to Hallmark and I'm employed by Hallmark. So the only chain of command is supervisor, then boss then district manager. we plan to call boss this weekend to get the real story and to give them notice that we are out of there after the holiday is over.

 

[eclectics]

I don't actually work for Walmart. Walmart leases out there card dept to Hallmark and I'm employed by Hallmark. So the only chain of command is supervisor, then boss then district manager. we plan to call boss this weekend to get the real story and to give them notice that we are out of there after the holiday is over.

Okay, now I understand. If your immediate supervisor is not sympathetic, then I suppose it's a lost cause. The pencil pushers higher up don't listen to excuses. They expect results and I suppose the boss and district manager are taking the brunt. Better to leave before things get ugly. I don't know the legal workings of the disabilities act so I can't say if that would affect things or not. I suspect your work agreement stating your disability would have to be in writing and signed off on, but I'm just guessing. I hope you find something else you like, hopefully with understanding management.

 

[disneydiva58]

Hi...im 48 and diagnosed with Lupus,sjogrens syndrome(tinks and christine I can relate)and rheumatoid arthritis.I used to work full time but now only work 3 days a week.I do not look ill but it kills me when people say "you are so lucky to only have to work 3 days a week" Id rather be healthy and be able to work full time.The meds I take really help but fatigue is a big issue.DH is the best, he helps out with all the housework and anything else that needs to be done.......The Best......You just have to hang in there and appreciate everything and every day Hugs and love to all

 

[Tinks]

Yes, the fatigue is awful! I really feel like a failure when it hits out of nowhere. I can be anywhere and feel my energy draining away and know immediately that I have to sleep. This makes life more challenging.

Are any of you Rheumatoid Arthritis, Sjogren's, Lupus etc, people on an antibiotic protocol? I just bought the book The New Arthritis Breakthrough and plan to learn a little about it. It does sound interesting and some people seem to have been put into a sort of remission on a regimin of Doxycycline. I have already talked to my Rheumatologist about it and plan to go on it if I develop worsening symptoms. I'm also on Restasis and hope this controls the eye dryness progression. We'll see----no pun intended!




Oh, and Tammi, I am very sorry this is happening with your job. I don't know what to say.

 

[disneydiva58]

Tink...how is the restasis working? I have almost total eye dryness.my eyes only get a little moisture when i cry.I havent been able to produce a tear in about 4 years. Did you see your eye doctor for it or your rheumatologist?Ive seen the commercials and am tempted to talk to dr. about it.

 

[Tinks]

My eye doctor prescribed the Restasis. I've only been on it for a couple of weeks, and I believe it takes several months for results. I can't really tell a difference yet, but I haven't had any dry eye flare ups. (some days my dry eye "flares" meaning increased dryness and pain!) I think the further you are along in the eye disease, the longer it takes to see results and the more stinging you may encounter when you apply the drops. I really don't notice too much discomfort from the Restasis but others have reported lots. I think it is definately worth a try. It is basically an immunosupressive medicine (cylosporine) that you are directly putting in your eye and the premise is to halt the body from attacking the tear productive cells/glands in your eye. That in itself makes Restasis different from just an ordinary eye wetting drop.

I hope it brings many people back to healthier more comfortable eyes because dry eyes are the pits!

There is a Sjogren's website that has a message board that has good information/help on dry eyes, dry mouth and all the other symptoms of Sjogren's. If you google Sjogren's Syndrome support you'll find it.

 

[tink2020]

What a fantastic thread! I think that chronic illness is something that REALLY plays on mental health, and far too many people are unaware of how true that is. Having support -- wherever it comes from -- is such a blessing!

I must say that I am quite blessed, in that my chronic illness is something I don't have to worry about on a day to day basis. My thoughts and prayers are with all of you that suffer day in and day out, and are faced with such tremendous fears.

I do appreciate a place, though, where even us "little guys" are welcome. I work in health care, and I can really relate to the notion that so many people think you are just a complainer, you don't know how well you have it, etc. The truth is, ANY chronic illness someone may have stinks. Period.

I have asthma and lower back pain (sacro-iliac joint, most likely caused from too many years of turning out in ballet). I'm only 22, and have been on daily NSAIDS for years.... which could be why I also was recently diagnosed with IBS. This actually came as a huge relief as DH and my doctor were extremely worried I was presenting with Crohn's or Ulcerative Colitis. That was so scary to me, so my heart really goes out to the many Crohn's folks who have replied.

But the kicker for me, is something that lots of people find controversial. I had mono when I was in the 8th grade. Since then, I have been diagnosed with "Chronic Epstein Barr Virus". Well, some doctors think that's a farce. Those of us who deal with it in our lives don't think so. I don't care what you want to label it, but I know that since that year my immune system has been absolutely crappy. I have bronchitis (and sometimes progression to pneumonia) every single year, without fail; very often 2 times/year. Same with strep throat, shingles, etc. I evey qualify for flu and pneumonia shots with the severly immunocompromised, even thought I don't have a "disease" that everyone knows about. The difficulty here is that there's nothing that can be done about it. I've gotten pretty good at recognizing symptoms right away and getting proper care before things get out of hand, but you can't stop the chronic fatigue, aches, etc -- and people get really tired of hearing that you're sick all the time.



Hmm... as I wrote this out I feel like a jerk for complaining about these things. I'm going to post it anyway, because this group has already been so supportive of one another. I appreciate all of your stories and encouragement.... I think I'll be checking back on this thread quite often.

 

[JennyMominRI]

So how are all of you sickos today and who is the sickest?

 

[ILUVMYBRIT]

Well I know Im not the sickest. My problems are so small compared to some which is what I am trying to remember today.
With everything in my life feeling so bad...Im just so down. I need to pull myself up and smack myself around a bit and stop being so negative. Its a beautiful sunshiny day....cant believe its going to snow.

I hope you are all feeling good physically and emotionally today. Know that you arent alone .

 

[JennyMominRI]

Well I know Im not the sickest. My problems are so small compared to some which is what I am trying to remember today.
With everything in my life feeling so bad...Im just so down. I need to pull myself up and smack myself around a bit and stop being so negative. Its a beautiful sunshiny day....cant believe its going to snow.

I hope you are all feeling good physically and emotionally today. Know that you arent alone .

I say that tongue in ceeck because I know that some days the *healthiest* one will feel the worst,and vice versa .I feel great today.I'm waiting for snow and making a bigpot of Lasagna,,Oh ad planning my April trip to the Wilderness Lodge

 

[tink2020]

I say that tongue in ceeck because I know that some days the *healthiest* one will feel the worst,and vice versa .I feel great today.I'm waiting for snow and making a bigpot of Lasagna,,Oh ad planning my April trip to the Wilderness Lodge

That's so true! This "healthy" household all have the flu.... blech! Achiness, respiratory junk, anorexia, etc all around! So no worries about stealing your lasagna here

Glad you're having a good day, though! And I think that planning a Disney trip might make all of us feel a bit better!

 

[chell]

Tink2002 do you have problems with your sacroiliac joint staying in place or just pain with it. Mine went out a few years ago and it will come out of place as well as my right pelvic bone.

 

[tink2020]

Tink2002 do you have problems with your sacroiliac joint staying in place or just pain with it. Mine went out a few years ago and it will come out of place as well as my right pelvic bone.

OUCH! No, mine is just severe inflammation and subsequently pain... that sounds awful! does it happen often?

 

[chell]

OUCH! No, mine is just severe inflammation and subsequently pain... that sounds awful! does it happen often?

Mine does that as well. Once it pops out the inflammation gets very bad. Luckily it doesn't happen near as often as it used to and now that I know how to fix it myself I don't have to suffer near as long with the pain. Typically it happens at least once a month depending on what I'm doing.

Sometimes it happens just walking around the store or something then all of a sudden I start walking with a strange limp.

I've gone through so much PT to fix it and try to make the muscles strong enough to keep everything in place but they simply won't get that strong again.

 

[clori]

I don't have a disability so I hope it is okay to post. Anyway my sil was diagnosed with Parkinson's Disease about a year ago. She is only in her 40s. I haven't told my 5 year anything yet but it is starting to become somewhat noticeable. I was wondering if anyone knows any good books to help me explain this to my daughter and possibly to explain it better to her 10 year old son (he knows but not sure his debt of understanding).

 

[Tiggeroo]

I've been following your thread. Hugs to everybody.
I've been having a medical problem and have been getting tests done. Right now i'm scared to death that i might have pancreatic cancer. Does anybody have any experience with this. I'm scheduled to meet with a gastro and have a cat scan on wed. My ultrasound was ok but slightly non-conclusive as they couldn't view the tail of the pancreas. I have kids and I'm truly terrified. My dh has bi-polar disorder and is no help at all with this.