The Chronically Ill support Group

[arminnie]

Arminnie, your baby is gorgeous!!!!

Thank you - so is your little darling. My boy is now 13 1/2 - he's deaf and has some hip problems but other wise is still pretty active.

I got him from a cocker spaniel rescue group when I lived in CA. He'd originally been part of a drug deal!!! Someone traded him for drugs, and then the drug dealer's parents couldn't keep him and turned him over to the rescue group. He is so sweet.

 

[va32h]

My 70 year old mother has just been diagnosed with COPD - Chronic Obstructive Pulmonary Disease - which the dr. says is basically emphysema, no surprise given that she is a lifelong smoker.

She is absolutely terrified, and says she "is not ready to die". We've been given a lot of info to digest, information on steroid treatments, breathing exercises, use of oxygen, etc. The front of our little brochure proclaims that people with COPD will eventually die of it, or complications arising from it, which is not much of a cheerful greeting for the newly diagnosed.

She is coming to live with me in June. I am very worried about my ability to take care of her physically and emotionally. I am concerned that she will become depressed. She is prone to depression anyway, and my fear is that after the initial shock and "I don't want to die" attitude wears off, she will be unhappy with the way her life has changed (she has to quit smoking, and curtail a lot of her physical activity) and decide she'd rather just die happy than live on miserably.

And of course I am deeply worried about her health. I am not ready to lose her - if there even is such a thing.

What kind of advice can you give me about maintaining a positive attitude with a chronic illness?

 

[bexareaglecheryl]

This thread is great. It's wonderful to have it here amid all the wonderful Disney magic. I think those of us who have these chronic illnesses appreciate the love and happiness that Disney inspires. I know that my DH takes me to WDW because he knows it gives me a real spirit boost. He says that anyone who has to go through all I go through deserves whatever gives her pleasure and happiness.

I was diagnosed with interstitial cystitis about 5 years ago after a year of doctor bouncing without a diagnosis. I had never heard of the disease b4 and most people haven't ever heard of it when I mention it. It is a very painful bladder condition. My pain feels akin to childbirth. I found a great dr and am now on methadone and fentanyl lollipops, so I am able to get out of bed and function. Yet there are some weeks when I spend all day on the couch. I don't sleep well due to the pain. Chronic pain, as so many of you know, is a real bit** to live with - but I try to LIVE. My pain doesn't cause me to be depressed, it makes me angry. But many many people have problems so much worse - so I try to keep it in perspective. Luckily, my DH and my two teenage kids are wonderfully supportive.

A few words on Social Security Disability: When I was diagnosed I had only been working a few years part-time after being a stay at home Mom for about 13 years. So I don't have enough credits to qualify. I feel like I'm being penalized for staying home with my children when they were young. If I had not been diagnosed I would most certainly be working, but working is just a pipe dream to me. There is no way. I know the system is put in place for certain reasons, but it seems like there should be another way for women to be able to utilize the system when they have a true qualifying condition.

I will pray for all my fellow DIS'ers that their burden is lighter and that their strength is fortified through the love of our God and the support of their friends (even the online ones!).

 

[Shugardrawers]

va32h--I worked for a long time at a medical home oxygen supplier. I am not a respiratory therapist but I'll share the benefit of my training and above average knowledge of the subject.

The vast majority of our patients were diagnosed with COPD. I wish that there was something more positive I could tell you but the info you've been given is pretty accurate. There is no cure for COPD and it can't be reversed. It can however be slowed down. It is absolutely VITAL that your mom use her breathing meds and oxygen AS DIRECTED by her doctor. Many patients use them only when they feel wheezy. That just leaves the patient open to more frequent and intense attacks. Beg, plead, bribe, cajole, demand, whatever it takes DO IT to get your mom to use the meds and oxygen as directed ALL THE TIME . She'll feel better physically and mentally. Each has a direct impact on the other.

You may want to consider getting your mother on an anti-depressant too. Wellbutrin really helped my outlook and shifted the focus from dying to living for me. Eventually, your mother's lungs will start to give out. As she starts getting less oxygen to her brain she'll become more forgetful. Some people's personality changes completely. Get all her affairs in order now if she hasn't already while she's still herself enough to make decisions.

With good treatment your mother could actually live another 20 years. COPD in and of itself is not a death sentence. There is no reason for either of you to give up any time soon.

 

[luvwinnie]

If you cannot work because of illness, you may qualify for social security disability benefits. I don't think they start for six months or a year, and I think it is supposed to be for something that is not just temporary.

If you qualify for social security disability (must have a certain number of quarters of paying into SS) you are also eligible for medicare. This is not medicaid. Your assets do not count. It's as if you are 65. You are also eligible to obtain a medicare supplemental policy (although not all supplemental plans accept disability ss recipients).

I think the minimum payment is approximately $800 a month. Some of it may not be taxable depending on your other income and your state's tax code.

It is a long process though, and they turn down everyone at least once or twice and then you go for a hearing with an administrative judge. I have a friend who was diagnosed with stage III ovarian cancer, and she was turned down originally. I have another friend with fibromyalgia who was turned down even at the hearing but appealed and finally was approved.

Some companies offer disability insurance. In CA there is a mandatory short-term (1 year) disability insurance that all employees have to pay into. I think some other states have it also.

All of the plans that offer disability insurance really try very hard not to pay claims. It is important to keep pursuing it even if turned down if you truly cannot work.

Thank you. I know and that does help a BIT, but still wouldn't equal my salary I'm sure.

 

[Shugardrawers]

If you cannot work because of illness, you may qualify for social security disability benefits. I don't think they start for six months or a year, and I think it is supposed to be for something that is not just temporary.

If you qualify for social security disability (must have a certain number of quarters of paying into SS) you are also eligible for medicare. This is not medicaid. Your assets do not count. It's as if you are 65. You are also eligible to obtain a medicare supplemental policy (although not all supplemental plans accept disability ss recipients).

I think the minimum payment is approximately $800 a month. Some of it may not be taxable depending on your other income and your state's tax code.

It is a long process though, and they turn down everyone at least once or twice and then you go for a hearing with an administrative judge. I have a friend who was diagnosed with stage III ovarian cancer, and she was turned down originally. I have another friend with fibromyalgia who was turned down even at the hearing but appealed and finally was approved.

Some companies offer disability insurance. In CA there is a mandatory short-term (1 year) disability insurance that all employees have to pay into. I think some other states have it also.

All of the plans that offer disability insurance really try very hard not to pay claims. It is important to keep pursuing it even if turned down if you truly cannot work.

I have stage III primary peritoneal cancer, which is the equivilent of ovarian cancer only I don't have ovaries. In order to qualify for SSD your condition must be expected to be permanent or last for more than a year. There's just no telling with most cancers whether you'll respond to treatment or whether you'll eventually die from them. I'm struggling in that stalemate with SSD right now. By the time it's all decided, I won't need it anymore for whichever reason! It's not much comfort that you might get a back payment in a year when people are screaming for their money now. And those creditors wouldn't be an issue if I had medicare to pick up what Blue Cross doesn't. Dh makes enough that we can live (just barely) without me having an income. What I really need is help with the medical expenses.

It's really sad that you or your spouse can work for years never asking for anything but when you need the help your tax $$ are going to pay for you can't get it.

 

[luvwinnie]

It's really sad that you or your spouse can work for years never asking for anything but when you need the help your tax $$ are going to pay for you can't get it.

SO true!

 

[chell]

I was diagnosed with interstitial cystitis about 5 years ago after a year of doctor bouncing without a diagnosis.

Even though it sucks isn't it wonderful to have a name for it and actually know there really is something wrong. For years I thought I was getting bladder infections like crazy.

 

[luvwinnie]

How's everyone doing?

 

[Rajah]

I've been doing a LOT better between starting my new position at work and having to keep up with Scamp. Still haven't gotten rid of those headaches, though. Not entirely. Ugh.

 

[LBAK]

I'm hanging in there. Trying to get ready for the holiday and it's slow going! I'm going to just chug along and what gets done gets done and if the outlaws, er, I mean inlaws don't like it they can go eat somewhere else!

I hope everyone else is hanging in there!

 

[luvwinnie]

I'm hanging in there. Trying to get ready for the holiday and it's slow going! I'm going to just chug along and what gets done gets done and if the outlaws, er, I mean inlaws don't like it they can go eat somewhere else!

I hope everyone else is hanging in there!

I like your attitude!!

 

[Shugardrawers]

For some ridiculous reason we chose yet another holiday weekend to move. We've done Christmas weekend, 4th of July, Memorial day so might as well do Easter huh? I'm afraid Dh doesn't understand that I'm not being lazy about packing and moving, I just honestly don't feel well. We'll have DSis and BIL to help but we move Saturday and I think there are 6 boxes packed, that's it. It'll be a loooonnng weekend.

Now for the good news: Due to a confidentiality clause I can't reveal a lot but I will say I had some testing last week to check the progress of a drug trial I am taking part in. There *may* be some very good news to share in a few months when all is said and done. Keep your fingers crossed.

Now the bad news: The med I'm testing is really rough on my body and they've increased my dosage substantially. It sucks to be me right now but it might just pay off in the end.

 

[buckylarue]

We're not prayer kind of guys, but we could use some good thoughts. My partner goes in tomorrow morning for a liver biopsy to see how bad his HepC has damaged his liver, and determine if they need to start him on aggressive treatment again. Last time he was on Interferon, it really kicked his butt, so he is not looking forward to another 18 months of that!

Meantime, I am dealing with the wonderful world of Medicare. My State-funded assistance program to keep me insured until my disability-mandated Medicare kicks in ran for 2 years. My Medicare starts in June, and I just found out that , if I am eligible for assistance on my Part D (prescription drug benefit), I will no longer be covered by any state program, which means that I will be responsible for the full premiums and copays of the Medicare program, so I will be taking a significant hit to my income. I will be seeing a benefits counselor at my Doctor's office next week to see what they can do for me.

It ain't pretty getting old, at least under our medical system...

 

[LBAK]

Shugardrawers- Lots of pixie dust coming your way that you hear LOTS of good news from your trial meds. Keep chugging along!

 

[LBAK]

Just checking in. How is everyone feeling? We've had a great week here in NY. Yesterday was near 80 so I took a nice walk on the beach. Unfortunately they say rain all weekend so I will be hurting. Oh well, I'll have to hope for good weather Monday. How is everyone?

 

[buckylarue]

Well, my partner got his liver biopsy results back. There had been indicators on other tests that his fibrosis might have progressed to cirrosis, so we were pretty worried, but the biopsy showed no change from the last one, so his Dr. recommended doing nothing different for now and getting checked again in a year! We were so relieved! Now we can finally start planning for our December and June trips to WDW without having to worry about him being so totally dragged out from meds that he would hardly know he was there.

Meanwhile, I saw the Medicare benifits counselor, got my application in for assistance with my Part D premium and copays, and found that my Drs. clinic and hospital have a compassionate care plan that will accept what Medicare Part A abd B pay as payment in full, so I don't need to worry so much about not having a full Medicare add-on policy. That is a real relief too! Now, as long as all the paperwork gets processed before June 1st, everything should be hunky-dory!

Of course, we had beautiful weather here the past few weeks while we've been sweating out these things, and now that we can both finally relax and enjoy it, it's going to rain for 4 days straight...but we'll definitely take it as a trade-off!!

 

[JennyMominRI]

Well, my partner got his liver biopsy results back. There had been indicators on other tests that his fibrosis might have progressed to cirrosis, so we were pretty worried, but the biopsy showed no change from the last one, so his Dr. recommended doing nothing different for now and getting checked again in a year! We were so relieved! Now we can finally start planning for our December and June trips to WDW without having to worry about him being so totally dragged out from meds that he would hardly know he was there.

!!

When are you going in Dec. We are going then too

 

[buckylarue]

We'll be at the BoardWalk Villas December 5-11; planning on doing MVMCP on the 7th and going to Karen's DIS Meet at Jellyroll's on my birthday, the 8th...

 

[JennyMominRI]

We'll be at the BoardWalk Villas December 5-11; planning on doing MVMCP on the 7th and going to Karen's DIS Meet at Jellyroll's on my birthday, the 8th...

Oh man..Ed an I will be there until the 4th with our friend from the UK. We will just miss each other.