The Chronically Ill support Group

[luvwinnie]

How are you guys dealing with a spouse/so in denial? Dh just can't seem to grasp that my entire life has been turned upside down and that all the meds are making my hormones go wild. If I'm not little becky sunshine he accuses me of being mad at him. We NEVER argue, until tonight and boy did it blow I just can't get through to him that I'm tired, I don't feel well and to top it all off I quit smoking 10 days ago. Yeah, I'm kinda cranky!!!

It is NOT easy, I know that. DH will ask me what's wrong as if he does not GET that I have a chronic illness...I want YELL sometimes!! CHRONIC! Look it up! NEVER going away.

 

[Shugardrawers]

Well, thanks but don't congratulate me just yet. It's only been 11 days. This is probably 5 times in the past year I've tried to quit so I'm going to wait a couple months until I start to feel smug

I do realize that being sick doesn't give me the right to treat Dh badly but there are times he just needs to suck it up and understand. I'm hormonal and the meds are causing huge mood swings. Add to that some really irritating things Dh does (which I usually ignore) and it's a volitile combination. For the first time, and I mean FIRST time since we met, we fought. Actually yelled at each other and I stormed off to the bedroom and slammed the door.

I'm still not exactly sure what the real issue was, since we all know it's rarely truly about what you are arguing about. In a nutshell, I fixed dinner for Dh though I wasn't feeling like eating and called him when it was ready. I was puttering around the kitchen picking up and he came in and got 2 plates out of the cupboard. I said I wasn't going to eat. He put BOTH plates back. He refuses to eat until I'm ready (which is maybe once every other day) and he tries to coax me into eating (read: guilt me). After dealing with this for a year I finally lost it, shouted "Good Lord"!!! And threw the knife I had back in the dishwasher. He was all stunned then starting shouting about why I was so mad at him. I made this nice dinner for him and he was going to let it sit and go to waste because I wasn't eating that's why. Then he couldn't figure out why I made anything in the first place. Gee...he's gotta eat sometime! I figure he busts his butt at work all day, I struggle to work 10 or 15 hours a week and I never have the energy to clean the house. The least I can do is make a decent meal for him. Anyway, that's what set it off but I'm sure the real issue has to do with medication mood swings and stress. A couple hours later I was snuggled up to him in bed watching Boston Legal.

I just wish I knew how to make him understand that mood swings are normal and it doesn't mean I'm about to leave him. And that I'll eat when I'm darn good and ready and guilt doesn't do much for my appetite.

 

[minkydog]

Many days I feel depressed and mourn the loss of my old self. I am so fortunate to have a supportive husband but sometimes that adds to the guilt because I feel like I tricked him. I am definitely not the person that he married. It is great to hear about other people's problems and how they deal with them. Thanks to anyone who took the time to indulge me in my pity party!

I just had to thank you for your post. As the well spouse of a man with chronic,progressive heart/lung disease I definitely get where you're coming from. DH often feels guilty about his illness, like he pulled a fast one on me or changed the rules. We've been married "for better or worse" almost 25yrs now. I have never, ever felt like I got short-changed--sad that he, that we have to go through this, but never resentful of him. It makes me sad that he can't do the things he'd like to do and that some of our dreams have had to change. Some activities are no longer as pleasurable due to his illness. Everything hinges on whether he's healthy this week. But I try to be flexible about it. I find that my attitude strongly affects his attitude--if I'm accepting of his disabilities, then he tends to not dwell on them. So, thanks for reminding me of the importance of my care-giving role in DH's healthcare.

 

[luvwinnie]

How is everyone doing?

 

[Shugardrawers]

How is everyone today? I think I'm picking up a case of mono, not sure have to see the doc tomorrow. Swollen glands, sore throat and general fatigue which really isn't anything that new.

I did however manage to quit smoking 15 days ago. It still really sucks but hopefully will get better as time goes on. Wanted to share a pic taken a couple of weeks ago when Dh, Petey and I met up with Mean Laureen and Obi-Wan Pinobi at the Richmond pet expo. Petey and Riley made tentative friends and we all parted excited to spend more time together in Williamsburg when the weather is warmer. Here we are below: left to right: Obi-Wan (Matt) holding Riley, Mean Laureen (Lauri) and me in the hat (hair isn't quite presentable yet lol) and I'm holding Petey.

 

[luvwinnie]

Not mono!! I hope not. I had it at 14...horrible. How are you now?

LOVE the pic, thank you!

 

[Tinks]

have you seen this site?
http://www.roadback.org/

Yes! I am Vicki. I've posted several times and I've read the book! I even PM'ed Obi Wan about it. I really, really believe these diseases have an infectious origin. (as well as a genetic one, obviously) It is interesting to say the least. I want everyone with inflammatory type diseases to know about that site.

Now, see, it's hard....I've been having good days lately. I've put off calling my rheumatologist for further testing (that I want, not that he asked for). I'm still learning all I can and will make decisions based on that. It's easy to put things off when you feel good.


LBAK---thanks for the tip. I will look for that!

to everyone having a rough day.

 

[Shugardrawers]

Not mono!! I hope not. I had it at 14...horrible. How are you now?

LOVE the pic, thank you!

Well, it's confirmed. It's mono. Not a good thing for a cancer patient to have. Lovely, just freaking lovely. OTOH it doesn't make much difference since I haven't been feeling well for oh, a year now

But how is every one else feeling??

 

[luvwinnie]

Well, it's confirmed. It's mono. Not a good thing for a cancer patient to have. Lovely, just freaking lovely. OTOH it doesn't make much difference since I haven't been feeling well for oh, a year now

But how is every one else feeling??

This is HORRIBLE. I am so sorry. Took me months to recover. Hoping you don't feel TOO bad....

 

[Patty3]

This is minor compared to everyone else, but I wanted to share. Back in November, I was having chest pains and went to the ER. It turned out that it was related to either my hyernia or my escophagus. I have been on Nexium for over a year due to uclers in my escophagus, which do seem to be healing. Ok, Sunday night, I had a pain that ran down the escophagus which took my breath away and I almost passed out. Thank God, I was not driving a car, I would have wrecked. The pain did not last long, just felt like someone sucker punched me. About an hour later, I got another pain in the heart area. This one lasted a couple of minutes and I had a hard time breathing. Laying down or walking did not help. What did help was kneeling and bending over the bed. After about 3 to 4 minutes, I was fine, but a little shook up. Was this my heart or escophagus? I did not go to the ER. Yesterday, I called my doctor and he wanted to see me. I was scolded for not going to the ER. An EKG was done and it came out normal. He is sending me to a Cardiologist tomorrow. I am 57 today and have high blood pressure. He wants to see if it is the heart or if it is the escophagus. I also made an appt with the gastro guy for April 7. Thanks for listening.

 

[Tink's Pixieduster]

My troubles are not as significant as what others here are experiencing, but I was diagnosed with esophogitis 5 years ago. Nothing has healed it (Nexium, Prevacid, Prilosec). I would like to avoid Barrett's if at all possible.

In addition, I also have osteoarthritis in my hands and legs/feet, and full-blown osteoporosis in my back and hips. My doctor was shocked because when the osteoporosis was diagnosed I was only 51. I've been taking Actonel for two years to try to rebuild some of the bones and this spring I'll have another bone scan to find out if the med worked. My constant back pain tells me it might not have improved anything. The recent news that calcium doesn't seem to be as helpful as it was thought to be was really disappointing.

I also had knee surgery last year to repair a torn cartilage, but three different orthos have told me my knee will need replacement sooner or later from the osteoarthritis. I'm forced to walk with a limp that has worn out my weak hips and back, and aggravates the osteoarthritis in my legs/feet.

If there is a funny part to this it's the fact that the only thing that bums me about all my bone issues is it slows down my getting in and out of the rides as WDW, and my walking issues make it take longer for me to get from one attraction to another.

 

[Shugardrawers]

The thing about chronic illness is this: While some of us have more life threatening conditions than others, all of our lives have been affected. Ulcers mean you can't enjoy the foods your friends do and they mean pretty significant pain at times. Asthma can mean not being able to keep up with your children. Arthritis can mean, as someone pointed out, having trouble getting in and out of rides at WDW. And cancer can leave you wondering whether you'll live to see your niece's wedding in the fall. All of us are suffering in some way that is significant enough for us to feel a kinship with the others who've posted here, even if we don't really know much about their illness. So now all of you stop saying "I'm not as bad off as others" because it's not a contest you silly gooses!

Luvwinnie-I'm expecting this to be a looooong recovery but at least it explains why I've felt so awful the past few weeks, at least more than I usually do. It's also gonna be good to milk for getting out of doing the dishes for a while (I'm j/k here, I don't milk my illness...at least not much )

 

[geetey]

Hello Everyone!

May I join the mix? It appears that I am the only person with MS (Multiple Sclerosis) to join in. What a lovely fun disease this one is.

A little background: I was diagnosed in June 2004, just before my 40th birthday. We were in the process of relocating from TN to MO; dh had switched jobs and was living in MO. The neurologist was a real gem that told me that if I drove to St Louis for the weekend (as planned) don't be mad at him if I couldn't walk in a week. I had my MRIs done on Friday and received the diagnosis phone call that evening - my 'scars' are that big and obvious. We ditched the doctor since 1. we were moving out of state, 2. he told us to research the disease on the internet and come in Monday with a list of questions and then BLASTED dh for 'taking life too seriously and worrying too much" and 3. he had an unhealthy interest in DH's hair (he was balding - dh has a normal full head of hair).

Completed move to St Louis, was in the specialist's office the next Monday. She is a great doctor but, let's face it, everyone's MS symptoms are so different. Basically it seems like you get put on an interferon, treated with steriods for flare-ups, and go on with things. In my particular case, the cliche that the treatment makes you sicker than the disease is true. I suffer from *extreme* fatigue, moodiness, and some nausea as a result of my IM injection (huge ouch there!). I basically ignore the daily problems of MS - the numbness, the tingling, the random shots of pain. My DH complains because I don't tell him when I am not feeling good, but I feel like I would be complaining ALL of the time!

I also have severe allergies and asthma but those are so easily controlled for me that I don't give them a second thought. I just wish my shots didn't make me feel so sick. Depression is a common side effect of the interferons - I worry about that. I apologize to my dh and kids about being grumpy because I used to be Mary Sunshine , and now everone knows to avoid me on Sundays (shot day) and Mondays (hangover day). I recently reached my 1 year anniversary on treatment, so my doctor doesn't hold out much hope of the side effects getting better. I can take more prednisone, if I like. Not!

Oh - sorry. My name is Terry! I am a huge St Louis Cardinals fan, LOOOOOVE Disney, have 1 DH, 2 kids - dd & ds - and a cute Westie dog.

Oh, and I have a thing for smilies. They are fun!

 

[LBAK]

What a day this has been! I thought everything was in check for now, the RA and the Sjogren's. Today I decided to flare. I dropped everything I touched because my joints were so swollen. I broke my coffee pot, my iron, a china vase and my DH begged me not to touch the washing machine! Then I got brain fog really bad. (Sjorgrens symptom) Forgot where I was driving to and ended up 10 miles in the wrong direction. Seesh, it was just one of those days! I am heading to bed where hopefully I won't break anything else and I will call an end to this day.

Hope everyone has a good and painfree night!

 

[luvwinnie]

Hello Everyone!

May I join the mix? It appears that I am the only person with MS (Multiple Sclerosis) to join in. What a lovely fun disease this one is.

A little background: I was diagnosed in June 2004, just before my 40th birthday. We were in the process of relocating from TN to MO; dh had switched jobs and was living in MO. The neurologist was a real gem that told me that if I drove to St Louis for the weekend (as planned) don't be mad at him if I couldn't walk in a week. I had my MRIs done on Friday and received the diagnosis phone call that evening - my 'scars' are that big and obvious. We ditched the doctor since 1. we were moving out of state, 2. he told us to research the disease on the internet and come in Monday with a list of questions and then BLASTED dh for 'taking life too seriously and worrying too much" and 3. he had an unhealthy interest in DH's hair (he was balding - dh has a normal full head of hair).

Completed move to St Louis, was in the specialist's office the next Monday. She is a great doctor but, let's face it, everyone's MS symptoms are so different. Basically it seems like you get put on an interferon, treated with steriods for flare-ups, and go on with things. In my particular case, the cliche that the treatment makes you sicker than the disease is true. I suffer from *extreme* fatigue, moodiness, and some nausea as a result of my IM injection (huge ouch there!). I basically ignore the daily problems of MS - the numbness, the tingling, the random shots of pain. My DH complains because I don't tell him when I am not feeling good, but I feel like I would be complaining ALL of the time!

I also have severe allergies and asthma but those are so easily controlled for me that I don't give them a second thought. I just wish my shots didn't make me feel so sick. Depression is a common side effect of the interferons - I worry about that. I apologize to my dh and kids about being grumpy because I used to be Mary Sunshine , and now everone knows to avoid me on Sundays (shot day) and Mondays (hangover day). I recently reached my 1 year anniversary on treatment, so my doctor doesn't hold out much hope of the side effects getting better. I can take more prednisone, if I like. Not!

Oh - sorry. My name is Terry! I am a huge St Louis Cardinals fan, LOOOOOVE Disney, have 1 DH, 2 kids - dd & ds - and a cute Westie dog.

Oh, and I have a thing for smilies. They are fun!

Hi Terry! Wow, that dr. sounds like a wacko!

 

[luvwinnie]

What a day this has been! I thought everything was in check for now, the RA and the Sjogren's. Today I decided to flare. I dropped everything I touched because my joints were so swollen. I broke my coffee pot, my iron, a china vase and my DH begged me not to touch the washing machine! Then I got brain fog really bad. (Sjorgrens symptom) Forgot where I was driving to and ended up 10 miles in the wrong direction. Seesh, it was just one of those days! I am heading to bed where hopefully I won't break anything else and I will call an end to this day.

Hope everyone has a good and painfree night!

Brain fog was a serious symptom for me when I first got sick...I'm an editor and I had a lot of trouble recalling words. Very scary.

 

[chell]

Brain fog was a serious symptom for me when I first got sick...I'm an editor and I had a lot of trouble recalling words. Very scary.

During the last year brain fog has become a major issue for me. I even lost my job because of it. Now I'm beginning if I'll ever get another decent job because of my brain fog and concentration issues. But what can you do? Too bad there isn't some protection for jobs out there for people with brain fog.

 

[geetey]

Hi luvwinnie!
Yep, he was definitive a weirdo! How's everyone doing? Shugardrawers, how's the mono? I got that (and shingles) in collge. I hope you are doing okay!

 

[luvwinnie]

During the last year brain fog has become a major issue for me. I even lost my job because of it. Now I'm beginning if I'll ever get another decent job because of my brain fog and concentration issues. But what can you do? Too bad there isn't some protection for jobs out there for people with brain fog.

Chell, i'm sorry, remind me what your diagnosis. I have a lupus-like connective tissue disease and psoriatic arthritis. Prednison helped my brain fog within days.

Michele

 

[arminnie]

Was this my heart or escophagus? I did not go to the ER.

I hope you are doing better. Also - it could be gall bladder. I went to the ER FOUR different times (twice by ambulance) thinking it was heart problems or esophogeal spasm. It took my hairdresser to diagnose it as a gall bladder problem.

Once I finally got a sonogram, the doctors who at been at a total loss as to what was wrong with me (and told me that I was imagining this) officially diagnosed the gall bladder problems, and I had it out.

It is so easy to diagnose with a sonogram, but you cannot believe how many stories I've heard about it being misdiagnosed.