The Chronically Ill support Group

[chell]

Hugs to you Tiggeroo! Sorry but I don't have any experience with that.

 

[LBAK]

tinks- I've been on Restasis for 6 months and I am just now starting to get relief. I have severe Sjogrens though. I put the restasis in the fridge and the stinging is less when I use it. I have very little moisture left anywhere. I make no saliva so I use evoxac for that and it helps somewhat. My tongue is so damaged from my dry mouth that I have trouble with spices, anything acidy like ketchup and on really bad days texture bothers me. You'd think I'd be thin with these problems. I just go one day at a time.

 

[Virgo10]

Well here's my thought for the day. It doesn't matter to my back if it's in the 50's in Massachusetts or in the 50's in Florida. It hurts no matter what the address when it gets this cool.

Bad cervical day with this big cold front coming in and the rain that's falling. I should probably be laying down with a pillow under my neck but I'm a tough broad!

 

[chell]

I was just sitting here wondering if anyone else was having a rough day because of the weather. All day long I have tried to be motivated and get some stuff done but I can't. I'm in the process of packing up everything for a move later in the month. Today I'm so COLD and in so much pain that I can't get started on moving. Good thing I've got a few more weeks to get this done.

 

[Obi-Wan Pinobi]

First, before I forget - Shug - call corporate Hallmark and tell them you want to file FMLA papers. They won't be able to touch you. Been there, done that with Lauri. I'm sorry this blasted company has gotten to you too

Now, back to business. Can spouses of people with chronic illnesses hang out here too? Sometimes its good to have a bit of support and to get an insight of how those affected feel.

For those of you that don't know, I'm married to MeanLaureen (Lauri), former Community Board mod, now on the crafts/cooking board. Back in May of 2000 she started getting sick with joint pain, sore throats, rashes on her face and fever spikes where she would be normal one minute and have a temperature of 103 the next. After several months of testing it was concluded that she had Adult Onset Stills Disease, a very rare Autoimmune disease.

Not much is known about AOSD - what causes it, how to treat it, etc. No drug companies are researching it because there are probably only under 10K cases in the world. The only thing known about it is that it strikes you normally when you are in your 30's. Majority of the AOSD cases will go into remission after 10-12 months. A small percentage of them will become chronic and will continue to worsen and worsen until the person dies from complications of the disease.

What the disease does is eat away at the persons joints and inflames and destroys their liver, spleen, lungs and the lining of their heart. It's basically a marriage of Lupus and RA without the deformation that RA can cause.

Anyway, Lauri has the chronic strain. For 3 yrs she tried everything from prednisone, dexamethasone to chemotherapy to try to get this stupid disease into remission. No luck. There is no making it stop. All they can do for her now is to try to make her as comfortable as they can, if you can call it comfortable. She takes on average 25 pills a day, of which 2/3rds of them are pain killers - from Morphine to Neurontin. Even with all the painkillers, she is still in constant pain. One of the downsides to her treatment is that she is severly limited on what she can take. She has a blood disorder called Von Willebrauns Disease. It's a variation of hemophilia. If she takes things that are aspirin or ibuprophen based, she bleeds. They did a bleeding time test on her back when she was in her 20's because she couldn't figure out why she was waking up covered in bruises. Normally when a person is cut, they should clot within minutes. After 15 minutes she still hadn't clotted. After that point, all forms of the above medicine were banned from her. She still bruises and bleeds easily, but its much more controlable.

She's also developed some lovely conditions on the side from the AOSD. Fibromyalgia came along about 2 yrs in. Pluerisy showed up after about 3 yrs. Now they think she could be developing MS. If it's not one thing, its another.

Sometimes I just don't know what to do for her. What more can you do when she wakes up screaming in pain in the middle of the night and cries until she passes out? Its so hard to be so helpless at times and I know she gets so frustrated and depressed. She feels her life is pretty much over.

Add to that the fact that she has to work to have insurance to pay for the monthly doctor visits and all the medicine, yet work is taking such a toll on her.

She joined a support group but it did more harm than good. She became friendly with several people on there. Then one day, one of them that was the same age as Lauri, was in remission, started having a flare up. She went upstairs to lay down in bed. Asked her husband to get her a cup of coffee. By the time he got back, she had died. Her heart gave out in the flare. I think a little part of Lauri died that day too. It made her realize that this could happen to her at any time and it scares her. It scares the hell out of me too.

 

[chell]

Matt I think you are more than welcome here. It is great that you are so supportive of Lauri. I'm sure she is very grateful to have you.

 

[Shugardrawers]

Of course you are welcome Matt! I hadn't thought about the FMLA thing. Part of me says it's just a piddly barely over minimum wage job and not worth the aggravation. The other part of me says I really like it. I'm so torn. The $60 or so I make a week sure isn't worth it. I don't know what I'll do yet.

Dh says it's almost as hard to sit by helplessly while your wife wastes away as it is for me to be sick. Men so want to fix things, be the hero and in cases like mine and especially Lauri's you can't. To know there is nothing that can be done and that nobody seems to care enough to learn must be absolutely devastating. Sometimes the only thing you can do is just be there. We women are pretty easy to please. We don't expect you to make it better or take it away, we just need your love, support and understanding.

 

[JennyMominRI]

First, before I forget - Shug - call corporate Hallmark and tell them you want to file FMLA papers. They won't be able to touch you. Been there, done that with Lauri. I'm sorry this blasted company has gotten to you too

Now, back to business. Can spouses of people with chronic illnesses hang out here too? Sometimes its good to have a bit of support and to get an insight of how those affected feel.

For those of you that don't know, I'm married to MeanLaureen (Lauri), former Community Board mod, now on the crafts/cooking board. Back in May of 2000 she started getting sick with joint pain, sore throats, rashes on her face and fever spikes where she would be normal one minute and have a temperature of 103 the next. After several months of testing it was concluded that she had Adult Onset Stills Disease, a very rare Autoimmune disease.

Not much is known about AOSD - what causes it, how to treat it, etc. No drug companies are researching it because there are probably only under 10K cases in the world. The only thing known about it is that it strikes you normally when you are in your 30's. Majority of the AOSD cases will go into remission after 10-12 months. A small percentage of them will become chronic and will continue to worsen and worsen until the person dies from complications of the disease.

What the disease does is eat away at the persons joints and inflames and destroys their liver, spleen, lungs and the lining of their heart. It's basically a marriage of Lupus and RA without the deformation that RA can cause.

Anyway, Lauri has the chronic strain. For 3 yrs she tried everything from prednisone, dexamethasone to chemotherapy to try to get this stupid disease into remission. No luck. There is no making it stop. All they can do for her now is to try to make her as comfortable as they can, if you can call it comfortable. She takes on average 25 pills a day, of which 2/3rds of them are pain killers - from Morphine to Neurontin. Even with all the painkillers, she is still in constant pain. One of the downsides to her treatment is that she is severly limited on what she can take. She has a blood disorder called Von Willebrauns Disease. It's a variation of hemophilia. If she takes things that are aspirin or ibuprophen based, she bleeds. They did a bleeding time test on her back when she was in her 20's because she couldn't figure out why she was waking up covered in bruises. Normally when a person is cut, they should clot within minutes. After 15 minutes she still hadn't clotted. After that point, all forms of the above medicine were banned from her. She still bruises and bleeds easily, but its much more controlable.

She's also developed some lovely conditions on the side from the AOSD. Fibromyalgia came along about 2 yrs in. Pluerisy showed up after about 3 yrs. Now they think she could be developing MS. If it's not one thing, its another.

Sometimes I just don't know what to do for her. What more can you do when she wakes up screaming in pain in the middle of the night and cries until she passes out? Its so hard to be so helpless at times and I know she gets so frustrated and depressed. She feels her life is pretty much over.

Add to that the fact that she has to work to have insurance to pay for the monthly doctor visits and all the medicine, yet work is taking such a toll on her.

She joined a support group but it did more harm than good. She became friendly with several people on there. Then one day, one of them that was the same age as Lauri, was in remission, started having a flare up. She went upstairs to lay down in bed. Asked her husband to get her a cup of coffee. By the time he got back, she had died. Her heart gave out in the flare. I think a little part of Lauri died that day too. It made her realize that this could happen to her at any time and it scares her. It scares the hell out of me too.

I think it's great to have you post here,and all other who love someone who is sick..I think you guys get the short end of the stick and it's a very hard osition to be put in..I know my other half feels helpless.. I fell asleep on on the couch and woke up when he had his hand in front of my mouth.He was making sure I was still alive.Poor guy

 

[Patty3]

I just wanted to give you all a big hug and tell you how courageous you all are. Matt, your post was so very touching, it brought me to tears.

 

[lovingthemouse]

Matt - mountains of hugs to you and Lauri. Over the years, we have conversed so many times about our spouses and the chronic illnesses they suffer from. True, we do not suffer the physical pain they endure, but the mental anguish is more than enough to remind us what the must experience!

I firmly believe if it were not for caregivers, more spouses would not keep trying... and it has taken me many years to acknowledge this point. People ask how we can keep up with with everything but many of us caregivers have learned that being tough helps us get through each day.

Of the 20 years we have been married, 16 of them have been in chronic pain for him, but he just keeps amazing me. Life has so much more to offer us!!

Our continuing prayers for you and Lauri and all others who see each day as another day to celebrate life. I am just so sorry that their quality of life isn't a more healthy one!! Caroline

 

[jabberpoo]

Rootskate my Mom was diagnosed with stage IV non small cell lung cancer last march. I feel your pain. In the last eleven months she has had to endure her lung being removed 3/05,two Pulmonary embolism5/05,radiation to her right hip 5/05, chemotherapy 6/05 to 9/05, pins and plates to her right leg 9/05, followed by a painful rehabilation 10/05, radiation to her right upper leg 11/05, followed by another admssion and rehab for a right groin tear caused from radiation. I am my mom's medical advocate everyone should have one. Write down everything (I have a notebook), get copies of reports and test and do not be afraid to ask questions. Lots of questions..... If you would like you can PM.. My family has planned a trip to Disney offsite in April with Mom can't wait. I can tell the most important thing is stay positive and focused. If you don't like the answers or treatment the doctor is giving you find another doctor. My Moms first oncologist was very down trodden and not very optimistic while my mom sat and listened to him tell her its bad, very bad ,I said check please we're outta here and found a more aggressive yet very compassionate oncologist. An most of all get your support anywhere you can I have found support/message boards and they are very helpful.... Jabberpoo

 

[Rootskate]

Thank you Jabberpoo.

 

[laurabelle]

Hey Jenny, great thread! I usually only hang out and post on the GAGWTA thread, but I certainly qualify here too, lol! I haven't read through it all (yet!) but I just wanted to say hello to everyone here and introduce myself to those I don't know.

I was dxed in Dec. 1998 with stage II breast cancer, treatment seems to be successful so far... I'm N.E.D. (no evidence of disease). Then about 3 yrs ago I was dxed with Ulcerative Colitis, an autoimmune disease. I've really been suffering with that, it's gone quickly from mild to severe, I was hospitalized on high dose steroids at the end of the summer, and it didn't help. They started me on Remicade (an immune suppressant) which was originally used to treat patients with Rheumatoid Arthritis, but had been used successfully to treat Crohn's patients. It had just come out of clinical trials for UC patients and I was started on it in the hospital and it was like a miracle drug for me! I went in complete remission immediately!

The Remicade infusions are given every two weeks, until you get to the 8 week mark and it is supposed to be given every 8 weeks from there. Unfortunately, once I got to that point, in Dec., I found out that by the third week, my disease starts flaring and I'm out of remission. I had an infusion on 1/20 and only got partial relief. I'm flaring again and have a sigmoidoscopy set for tomorrow morning. My GI doc wants to see what's going on before he tries giving me a double dose of the Remicade -probably to appease the insurance co. as this drug is very, very expensive!

I've been on every other med there is for this disease, and I'm told if I fail the Remicade, the only option left is removing my colon. I'm reading up on it now. I really hate the thought of it. Supposedly it's a cure, but I'd like to know that for certain. Logically, it doesn't make sense to me, if this is caused by a "defect" in my immune system, and I have my colon removed, wouldn't my immune system just move on and attack somewhere else in my body?

Matt- I wonder if this drug could help your wife Lauri...

 

[laurabelle]

ok, I'm reading this thread backwards,lol! Anyway, I wanted to respond to those of you talking about Lupron. I started taking the shots during chemo to shut down my ovaries and was supposed to remain on it indefinately, even after consulting about having an oopherectomy instead...I was told teh shots were "less invasive". I took it for 3 yrs and finally begged off. The side effects were awful for me. Everything Shugardrawers and luvwinne said. I was never told about any side effects either. I did see that website about Lupron Victims, too bad it's not around anymore. The potential long term side effects were bad. I do remember reading somewhere that no one should stay on it more than 6 months! I did get periods back about 4 months after I stopped Lupron and recently (finally!) had an ooph/hyst done.

 

[Shugardrawers]

Just wondering how everyone is feeling today?

 

[LBAK]

Thanks for asking Shugardrawers- I'm very sore today. I knew I shouldn't have gone out in all that snow yesterday but I wanted to be normal and enjoy it with my family. I just wanted normalcy. We had a blast but today I am paying the price. Thankfully school is closed so I don't have work and I can just lay around. Hopefully everyone else is having good start to the week. How are you doing today?

 

[iluvdisney]

Gentle to everyone today. Not a very good day for me today - got about 4 hours sleep last night and I have to get a move on today - didn't get much done yesterday - it wasn't a good day for me.

I went thru the Lupron treatment about 10 yrs ago - didn't work for me and eventually I wound up with a hysterectomy - not sure if any progress has been made with this treatment but I have not heard of too many success stories.

The explanation for the initials I gave the other day -

RSDS = Reflex Sympathetic Dystrophy Syndrome also known as -
CRPS = Complex Regional Pain Syndrome

IBS = Irritable Bowel Syndrome

 

[chris1gill]

I fell asleep on on the couch and woke up when he had his hand in front of my mouth.He was making sure I was still alive.Poor guy

Hey Jenny, your other half isn't alone, apparently I must have looked odd a few days ago... DH did the same thing, came over to see if I was still breathing Course I don't really appreciate that because I WAS still breathing....

As for how I'm doing today, I'm not, I can't move my legs for any distance to save my life, and since I hate using the wheelchair in the house, I'm just sitting here in front of the computer for the day... BLECH...

 

[luvwinnie]

Not too bad today, except for my horrible commute. Worrying a bit that my meds aren't doing their usual magic...past couple months I have hip and shoulder pain. I see my rheum. next month.

 

[luvwinnie]

Hey, where is everyone? All healed? Wouldn't THAT be wonderful?

Pretty bad shoulder pain today. Hoping Aleve will do the trick.