Hi Buttercup. None of its easy and no two days are the same. We don't have much choice about living with Poly. If you got it, you've got it but I find it earlier to try to be positive rather than get down about it. I don't research the Internet and investigate what may be. I hope your new treatment will really work for you and you can get to a place where 'there is life after Poly' best wishes to you. Autumm

Hi Kitty. Good question. I saved my money while teaching school. I now live with my mother. I am unemployed. I really would like to get a part-time job, but I am concerned that I would be unreliable. I have doctor appointments that are scheduled over the next several months that would interfere with a work schedule. I have DM with overlapping Scleroderma. I am concerned about running out of money. I do have high insurance premiums with the ACA.

I now have fatty liver thanks to Prednisone and Methotrexate use, along with an autoantibody that also causes liver damage. I have developed Chronic Kidney Disease from my liver shorting out. I also think my pulmonary hypertension works in sync with the liver & kidney problems. Notice that it is the filtering systems that seem to break down. People with liver issues are also at high risk for developing type 2 diabetes. I am not a diabetic yet, but I am watching my blood sugars. I know when there is a problem with one organ, that it does effect the working quality of other organs. It is sort of like having a bad transmission in a car. I also have severe osteoporosis since Prednisone, Omeprazole, and my kidneys seem to be sucking the calcium out of my bones. I do not think my supplements are able to keep up with the damage. I now have high calcium levels in my blood which is a symptom of kidney issues.

I am homebound most of the time. I will go out to the doctor or pick up an Rx. I watch my pastor/church on DVD everyday, but I do not attend regular bible classes. I get my DVD from church one week after the sermons were taught. I have been doing a lot of bible study since I am preparing to meet The Lord. I am definitely trying to learn as much as possible about The Lord and His Word.

I am now at a point where I have nausea a lot. I throw up at least twice a week. The nausea is related to liver/kidney issues. I know I will eventually get to the point where I will need medication to keep my food down - this is part of having kidney disease. I drink at least 72 ounces of water daily. I ride a stationary bike for exercise. I wake up at least twice at night to urinate. I have DM aches too. I have also been getting low grade headaches that do not go away.

My doctor recently had me lower my Cellcept from 1500mg daily to 750mg daily. The medication lowering is due to my liver not tolerating the meds. HA! This is going to get real interesting when I have a flare and need to go up on meds. A flare might mean that it is time to meet Jesus for me. I actually look forward with enthusiasm to meet The Lord and all the fine people mentioned in the scriptures.

I am not complaining or ungrateful about my health issues. I know my health is part of God's plan to bring me closer to Him - Literally physically and literally spiritually.

As Autumm mentioned, each day is different. Some days require a nap, but most days do not. PM has changed my life a lot. My former job was high-stress and long hours, but now I'm blessed to work from home (tutoring, bookkeeping, and sometimes other odds & ends). The current job situation is much less stressful, and (I believe) helps my health. Also, my eating has changed a lot. I have been gluten-free for 5+ years, often eat meatless meals, and, most recently, have begun working on digestive issues. It requires more prep time and a willingness to try new foods, but it has been a positive experience. And working from home provides the extra time I need for baking and food preparation.

For me, I do lots of online research, because it helps me feel empowered and provides info for creating question lists for my doctors. Also, this forum has been a source of encouragement, because others without this disease cannot understand what I/we experience. I only go shopping when I feel able, and I choose stores carefully, i.e., my strength determines the size of the store in which I shop. In addition to the above, I take supplements. It bothers me to ask people for help, so I don't ask unless it's absolutely necessary. But my family and friends are always gracious and willing. All-in-all it's a very different life, but it's still a blessed life, despite the limitations.

I too take it a day at a time. I have remained working but a few years ago, I arranged to work from home. This year, I put my foot down that I will no longer be traveling for work unless critical. Those business trips kill me. My work is lots of conference calls and stressful computer work. I need to keep at it as long as I can because I am single and don't have friends or family that can help me if I am no longer able to work.

I also find I am slowing down on my personal travel. This is a huge issue for me because I love to travel. But there is no sense if I stay holed up in a hotel room, unable to go explore.

My goal is to sell my house when my son moves out (graduates in a year) and hopefully find a condo that is cheap enough and flat leveled, I could afford it on disability SS. I don't have savings to cover any gap. I don't know if this goal is doable but it is a good thing to try for.

Socially, I am much more homebound then ever before. For each activity I've had to cut out, I've tried to find something to fill the gap. I've joined a book club, online scrapbook group, and support groups like this one where I can "socialize" sitting on the couch. I do get lonely sometimes and sad about how much my life has changed. I try to focus on the positive though and look for things that make me happy and feeling good.

Hi Buttercup. I know that if I feel better in the evening I have a very small minute of thinking maybe the next morning it won't hurt - but sure as eggs are eggs the morning brings stiff hands and muscles when I wake up. I get really fed up with it like the rest of us but know that by the afternoon it wears off a bit. I try to do a lot of my activities and housework in the afternoon and evening as I'm a bit useless in the morning. I cope by setting goals ahead. Even something like going out to a garden centre or visiting somewhere new where I can take my time to walk around and have plenty of rests. This DM won't get the better of me - I know that for a fact.

I second Buttercups question. How do you live with myositis and the chronic pain and the lifestyle changes it brings?

I thought having deg disc disease (back issues) and related muscle spasms and nerve pain was tough enough but now the myopathy is causing severe leg and foot pain that blows the doors off my back problems!

My calves feel on FIRE and my feet feel like the bones are pushing through the bottoms of my feet.

@DarrenM
I think you are new here. Welcome. This is a nice group of people. I hope you will be encouraged.

Nanny, thanks so much for the warm welcome!

I am not sure (yet) what kind of myopathy I have, but this group appeared to be the most relevant to my issue.

Well How I want to live with DM is basically to tell it to get out of my life for good. But in all I try to make the best of it. I have switched to the atkins diet and cut off breads and pasta. It's been working in keeping my flares from arising.

I started to excercise to try and lose the weight that prednisone made me gain. Thanks to the Wii Fit and my love of ballroom dancing, I am doing good in that area and so far have lost 7 pounds in the past two months. ^_^

Luckily for me I only have major joint pain in my right hand, from my wrist to my fingers. Also my flares and rashes do brake out all over my body. From my face, chest, arms, hands. stomach, back, lower back, knees and toes. Its such and uncomfortable experince. :/ But I cannot imagine how everyone else feels who expeince more extreem symptoms. My condition is nothing compared to others in the same boat.

I can work, go out and do errands, but not for long since I get tired extreemly easily these days. Just take one day at a time and dont push yourself.

Meow.

Thanks, everybody, for sharing your lives. Makes me feel less lonely, reading the posts. Keep fighting for the upper hand. Smack DM/PM/ICM right in the puss! Rowl.

May all of our Rheumy's help us create better futures.

I hope my sharing helps everybody seek better medical care, better meds, better mobility aids. I learn so much from each post, and I'm thankful to have a site like this one.

Hugs & Purrs & Prayers,

=^.,.^=

And the same back for you Buttercup. Autumm

Krissytin, Steroids make you retain fluid. We lost a good friend to the Atkins diet. I found that going on a vegan diet was most helpful. It helps you lose weight while giving you the nourishment you need.

I am sorry for our loss Pluggingon, i do think it depends on other factors too. The diet has helped me greatly, I am now down to the weight I was before my first symptoms of DM. I invited newer veggies/fruit into my diet as well like squash, zucchini, avacados, asparagus, kale, grapefruit and eggplant. I see improvements not only in weight but skin and nails.

*your loss