Gardenchick..its ok to feel like you do your not ranting at all ...its good to say how you feel .
i wish i could give you a hug but i'll send one this way ...hhuugggg :) its super hard missing the person that you are and feel like something big is keeping you from being that person....i'm sue since you are on the road to getting better as you said you feel better then in april...so you are on the way up ... can you go outsied and sit in the grass (sounds wierd i know ) staying out of the sun ? if so , please go site outside put your toes in the grass ..lokk up to the sky and breath calmly and picture yourself being "you"
Tami

sorry about my spelling again"

yeah, sitting in the shade even. and that brings me to the question of.. what do you do for vitamin D? deficiency can result in depression, and it seems you are pretty depressed.

Hi, gardenchic, and welcome to this forum. I was diagnosed with Polymyositis in 2008, and then with overlapping Dermatomyositis and Lupus in 2011. Along the way, doctors have felt that I also might have Sjogren's, Scleroderma, and/or Reynaud's. In addition, I have Osteoporosis. Yes, it can be overwhelming, but my philosophy is to "fight, fight, fight" these autoimmune diseases. FYI, there is a active myositis forum here at Daily Strength that you might want to join also.

xa1nbowxR mentioned Vitamin D deficiency, which is quite common with these diseases. I was VERY deficient and gained some strength once I supplemented per the doctor's instructions. Also, I found a connection between gluten and a worsening of my symptoms. Thus, I went on a strict gluten-free diet and will remain that way for life. Artificial sweeteners cause me much pain, so I avoid them, along with some refined sugars. I have joined Pinterest and found more than 1,500 recipes for gluten- or grain-free goodies, which allow me to eat desserts that don't harm me. In addition, someone on this forum gave me some dietary pointers, so I have added kefir and sauerkraut to my diet, and am saving money to purchase grass-fed beef. I'm already seeing improvements in my digestion.

I remain vigilant and constantly research health issues, and I am very proactive in caring for myself. Doctors told me that I would be on prednisone for life and would need additional meds, but I am currently off all prescription meds. Yay! Of course, I take several supplements daily, such as a natural anti-inflammatory. And I try to exercise everyday--walking on a treadmill, and dancing or bowling with my Wii.

There is life despite these illnesses. Look for ways to cope and conquer these diseases. You've taken a good first step by joining Daily Strength. Sorry that you have need to be here, but glad you found us. Hope you will be encouraged here. Hugs and best wishes to you!

Yes, i've been diagnosed with depression since 2010 and i have Vit D supplements that i take (drops). I'm also one of the lucky ones where the sun doesn't really affect me! So i do get outside in the sunshine to get vit. D from time to time as well. (wierd twist of fate that the sun doesn't affect me, but i'm ok with that).
I do know that gluten does cause me to go into a downward spiral. So yes, gluten is one of those things i've had to cut out (and i miss chewy crusty bread). I'm not strict, but i've cut gluten out by 90% and it has done a world of good.

It really felt good to just get all of that off my chest. I'm actually feeling more upbeat already. I just had that drowning feeling where i didn't know what to do or where to turn. My family is incredible supportive, but sometimes its hard. They try to understand, but just can't. I don't hold it against them in any way, but its nice to have someone to talk to who KNOWS what i'm going through. I'm going to try to focus on the positive and remember that it will get better (the evenings are the hardest, when i'm in the most pain and my thoughts sometimes turn negative). I really appreciate the hugs and kind words. Thanks again.

Welcome to the group.
Everyone here gets 'it' and you will always find someone to talk to. So don't drown, as Dori says, Just Keep On Swimming :)

Thanks SleepyT (I love that movie btw). I've planned some easy things to do in the next little while to help with distracting me. I'm trying to focus more on what i'm eating and putting into my body to try to control the disease. Unfortunately I ate some crappy food in the last while so that may be contributing to the depression and overall feeling sick.
I also got some bad news of a friend's husband passing away unexpectedly... which not to sound selfish, did not help the depression. I keep telling myself over and over it will get better.

It will get better! The best is yet to come! :)

Hello, I am so sorry about your situation.

I also have more than a handful of diseases, all connected with SLE/MCTD, in fact in my case it is rather two handfuls, so to speak.

I was in a similar situation like yourself, bewildered, confused, desperate and completely lost because the doctors/specialists did not help me either: all they seem to know is which drugs "most of SLE patients are prescribed", but that did not help me, because one of my big medical problems is my suffering from drug-intolerance and I suffer from so many allergies to all sorts of medications, foods, clothes...you name it and I am sure allergic to it...I also suffer from severe photosensitivity to sunlight and ultraviolet light...

It was all too much, but then I sat down and made a plan about my own health-management and for me to learn, how to deal with it all and I started to learn as much as I could about all "my" diseases and at the same time I started to observe my body carefully and learn how to listen to the signs my body gave me.

I then started to learn ways of how to calm my body and how to relax, because most of SLE/MCTD-flare-ups are due to stress and in my case my relaxation is baroque music and when I play the piano. I did start to learn play the piano from scratch as a total beginner and I make good progress with it.

My facing and managing my health problems is not a perfect system, but at least it helped me so far to keep alive and all my learning/studying helped me a lot to keep my kidneys in (irreversible) end stage kidney failure with only a 10-12% kidney function for almost seven (!) years without the symptoms to need dialysis.

Mind you, it is hard work and does not come easy. I have to stick to my strict vegetarian kidney friendly diet, have to go for regular walks, whether I like it or not, to keep the Urea as down as possible etc. and to assist my "two little fighters" (meaning my kidneys) as much as I possibly can..

What I am saying is that it can be hard work sometimes and unfortunately with SLE/MCTD etc. we do have to study and learn a lot about our body as well and about our different adding diseases, but it is really worth the effort.

I do wish you lots of luck and believe me, I do know where you come from and that it can be hard work sometimes, but it is worth it.

Best wishes and good luck from Kristina.

Thanks Kristina. I was doing so well for such a long time, it was really just a shock to go downhill so fast and to stay there. I've had minor bumps in the road, but nothing like this. My GP and Rheumatologist are both stumped. We (and I mean docs and me) decided to go back to the dosages of meds from the past that got me to doing so well in the first place. I thought it was a good first step to get me back to "livable".
Second step is managing my lifestyle. I have to keep exercising or I lost mobility in my hips and legs. I have an almost vegetarian diet and mostly gluten free. Any meat I do eat is local, organic, crap-free meat. It is so true that you are what you eat. And I refuse to be Lupus. Good luck with you too, its a long road, but there are people to help us along the way especially when you/I need someone to lean on. *feeling optimistic for the first time in months*
Pat

I haven't tried a gluten free diet, but I've significantly cut back on sugar, white bread, fats, and fatty meats. I have also added flaxseed oil with omega 3, vitamin D and very strong ginger tea, which have seemed to help with inflammation. I tried prednizone once when I had shingles and felt as though I was plugged into a light socket.rheumatologist suggested an anti-malarial drug which can damage your vision. As I am a librarian, I do have to see. I am also bipolar II and take a number of meds for that. It was suggested that I might have post-polio disorder, but no doctor has considered or tested for that. I take it one day at a time, pace myself, and sleep when I can. It's a struggle and there's no cure, just coping.

Thank you, gardenchic for your kind reply and thoughts, it is very much appreciated. I am so glad that you feel a little more optimistic and that you are on your way to come to terms with the up and downs of Lupus/MCTD. Our good survival is just a learning process and we learn as we go.

I send you my kind greetings and wish you good luck and I am sure we make it all the same despite Lupus/MCTD with all its different adding diseases and variations and ups and downs.

Best wishes and good luck from Kristina.

P.S. Don't forget to let us know how you are getting along..., best wishes.

I've had many ups and downs over the years. I've had times where i couldn't walk or breath without assistance. I've had times where i did 5-10K charity walks. I've climber Notre Dame Cathedral, and I've been hospitalized. I know its a journey and a long road ahead. I'm feeling fairly positive because i'm thinking the drugs are working (hoping maybe too). I find that "hoping" things will work makes me feel better even if things aren't great. *fingers crossed*