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Posted 7/11/2010 10:17 AM (GMT -8)
Hey everyone! It seems to have been a long time since I have seen some of you post. Just wandering how EVERYONE is doing and hopeing to here from several of the vets that haven't been around for awhile...


Anything big happening this summer for you?



I am doing well, Been having a busy week and 2 more weeks will be packed. My family from Costa Rica is visiting and my niece (4 yrs) and nephew(8 yrs) keeps me going and going and going. So having a blast but very tired!!!



What about you?
Posted 7/11/2010 11:22 PM (GMT -8)
I am seeing some improvement in my cns issues. I go to Cedar Point Wednesday and Thursday since the trip is prepaid and been planned for MONTHS with no chance of a refund or rescheduling. I just hope I can enjoy it, a lot of rides aren't made for fat people and I be a fat person in part thanks to prednisone and in part thanks to depression. Oh well, I will enjoy the waterpark more my husband is the rollercoaster person in the family.
Posted 7/12/2010 3:08 AM (GMT -8)
Hey Redrose!!! There is still some hope, I went to carowinds on Saturday and rode some of the rides, still managed to squeeze into them all. There was one I will never ride again because I think its purpose to is to cut of big tatas but somehow mine are still intact but I learned a very vaulable lesson, if you have trouble getting the thing on over your upper body and your a female...DON"T DO IT. LOL.

I hope you have lots of fun and you are able to enjoy your trip! I would recommend carrying an umbrella to protect you from the sun. It is seeming to be extra toxic to people around here this year!!
Posted 7/13/2010 8:34 AM (GMT -8)
Hi Amy, Always good to hear how everyone is doing. Sometimes "life" has a way of keeping us from checking in here as often as we'd like.
As for me, one year since I started CellCept and, other than a few things here and there, life has been good. My DH and I are taking the two grandsons (and their parents) to Wildwater Kingdom for their birthdays next week. I am a bit nervous but am determined to have a wonderful day and NOT go into a flare as a result of the trip.
Hope everyone else is doing well and enjoying themselves!
Posted 7/13/2010 1:48 PM (GMT -8)
On this side of the street -- my blood work has shown no signs of inflammation or ANA for about a year now, and I am feeling pretty good, with my prednisone at 4mg. Dropping to 4mg or even 3/4mg alternating just makes me so tired!

I still need 10-12 hours sleep per night, unfortunately that seems to come between 2am-noon most days. I get tired easily, so still stick with my "one activity a day" rule most of the time. If I do laundry, I don't clean house. If I get groceries I don't do laundry, that sort of thing. If I exercise, I read a book. If I have a DR appointment, that's it for the day.

I'm slowly trying to get my body back into some semblance of it's former shape -- like losing the 40 lbs of "prednsione cravings" weight (combined with the no-appetite attitude of "if I don't want to eat anything, then even eating bad things must be good") -- and being able to run 3 miles. (Marathon runner pre-lupus.) It seems my sense of "feeling good" is advancing more rapidly than my muscles & muscle tone & I'm hurting myself (nothing major) -- haven't yet learned when to stop vs. what little bit more is going to help me gain strength. So it's going rather slowly and I am impatient. But ever-so-grateful for what I can do!!

The cognitive involvement was truly stopped and reversed some with my 18 months of Cellcept. I still often type words that are SO NOT what I had in mind - good thing proofreading is a life-long habit or you guys would never know what I am talking about. I still get lost in conversations and can't think as I could previously, so my former profession is out of the question. I've recently found a place for "cognitive recovery" that I'm hoping might be helpful with some of this.

One difficultly is odd -- I've always been a bookworm. Even at my busiest times of life I read 2-3 books a week. Recently I get this sense of deja vu no matter what I read. One book I've checked publication date 3 times (first release last month) but I swear I've read it before - I can tell you what's on the next page! It occurred to me yesterday that maybe this deja vu feeling is common with brain damage?? I guess that's not really major in the scheme of things but it is driving me nuts! Anyone else have similar issues?

I'm sure that's more than you wanted to know...slowly catching up on household repairs that I didn't have the energy to face 2004-2009. Pets, friends, family okay. Need to work on regaining some face-2-face friends I lost when I couldn't do anything.

Cheers, I hope those of you who aren't posting are out having fun!
Posted 7/13/2010 4:05 PM (GMT -8)
Hey Fran, glad to hear you are doing so good! I hope you have a great time with the trip with the grandkids, I know you are so excited about that and hope you get to have fun and don't wear out to easily!

Hey Lynn- thats good news about being at 4 mg of Pred. I know you want to come off of it and I sure hope that eventually you will be able to! Thats a good idea about limiting what you do during each day, I hope that you will get more and more energy s that you can work out like you used to and build up your milage each day. Doesnt it stink how your mind is ready even when your body is not? But it sounds good you have a good grip on things and will get to wehre you want to be. I have not experienced the deja vu thing when reading because I don't really read but could it be that possibly that books you are reading close to another stories background that you have read???

It good hearing from you all so far...How is everyone else doing?
Posted 7/13/2010 4:34 PM (GMT -8)
Hi everyone!  I'm doing well!  Still off the prednisone and doing ok.  Have been getting a little sick every once in a while for the past couple of weeks because of all the stress of my upcoming move back home.  But, I'm still excited to move back home and closer to family! 

I've decided to take the easy route and get movers to move me rather than deal with the added stress of a Uhaul and getting everything there in one piece and making sure everything happens at the right time.  Especially, since my body's been flirting with illness because of all this.

 

Hopefully, I'll find a good rheumy once I get down there!  I hope everyone is well. 

Posted 7/13/2010 8:18 PM (GMT -8)
Hi Everyone -I haven't posted in ages, but I check in pretty regularly.  I'm still flying around in the land of limbo somewhat - although I did finally get in with a rheumy I am happy with and am being helped by.  He wasted no time treating me for bursitis in my hips (after previously being told my pain was all due to fibro) and referring me for help with my back and a blood issue, which we're still working on.  After finding out I have Celiac disease, I've been gluten free for very nearly a year.  I think it has caused some general improvement, but has not been the solution to all problems, that's for sure. 

 

Previous (2nd) rheumy attributed everything to fibro and told me to cut back to one dose of Plaquenil a day, which I did and things went along alright for a few weeks, and then I started flaring....just in time for my son's wedding in early June, which required traveling.  I went back to 2 right away then, but it was too late to save me completely - although I did enjoy the important moments of the wedding and family time - the general stress and traveling was rough and I ended up in the ER the day before we were to fly home.   New rheumy (3rd time is the charm) thinks I have sero negative RA with connective tissue overlap, (along with fibro) told me to stick with the Plaquenil, and I can use short Prednisone bursts if similar scenarios like the wedding/travel arise. 

 

I am feeling better now after a very rough spring and start to summer.  I have increased my walking distance (a block and a half!) and enjoy less pain doing it.

The fatigue has lessened, but I still find I run totally out of steam in the late afternoon and generally have to limit activity.  Like Lynn - I'm learning that pacing and rest periods are great tools.  I also have a hard time getting to sleep before 2 AM and up before 10....but I'm no longer working so what the hey.  I was born and raised out West - if I still lived out there - I'd be on a perfect schedule!

 

I am working on toning up some unused muscle also - as well as trying to increase social activity and reconnect with folks I've just been unable to keep up with.   I don't know what the course of progress will continue to be, but I'm sure happy to be feeling some improvement and am trying to enjoy the summer as much as I can and hope for and work toward the closest to the old "normal" I can be. 

Sure am grateful for this forum and all it's good folks.....hope everyone is enjoying a pleasant summer! 

Posted 7/14/2010 8:08 PM (GMT -8)
Hey Ames, thanks for asking! You know Lynnwood said somthing that I have been trying to talk myself into forthe past few weeks. "about being thankful for the good days". Well for the past 2 weeks I have had more good days then I had my who days combined over the past 2 years. I have vacummed the floors everyday this week just trying to pull dog hair out of the carpet I don't know if I will ever get all of it but I'm getting a lot. It's the first time since I have had an aide that I have done that stuff myself. I did up the dishes made my bed, did my laundry. Don't get me wrong my ankles have gotten swollen but pride I felt just being able to do a few things for myself was worth ever ache and pain. As long as I don't end up in the hospital it will be worth it. My aide was here yesterday and she was talking to me and my eyes were closing on her. She said are you going to sleep on me? LOL. truth is yeah I'm exhausted. But it's a good kind of tired. I've been on the compter and realized I had typed words like eeeee lol because I was falling asleep in the middle of a sentence. But hey the next time I get sick I don't have to get depressed. I can just think about how I really do have a life. It's just the road I'm traveling down has a few pot holes in it.
Let see what else. Taco is staying with my bro and SIL so that is helping me out with protecting the kittens from being eaten lol. Today I made polish sausage soup. I had to order it special from chicago and dry ice it to oklahoma. You can't find fresh polish sausage around here. Anyway I havn't had it since my hubby died. He was 100% polish and taught me how to make it. Well anyway I have the two kittens. 1 female is tiger striped and she ishwat I call an avg. american tabby. I dipped some sour dough bread in te juice and gave it to her. She stuck her nose up at it. then my other kitten. Her brother looks like a simese and he took it and growled if the girl got close to it. he loved it. So turns out I have a polish siameese cat! Some how bubba doesn't seem like a good name for him anymore. I mean a polish siamese cat named bubba. He's gonna grow up chasing his tail.! well it's 11:00 and I told myself I would get some sleep tonight. instead of up and down all nnight. So if I'm gonna be worth my salt tomorrow I better go do what I said.
thanks for asking how we are doing. Roll calls are a good thing sometimes. just to get caught up.
For all the good days, good friends, and sunshine I truely thank God.
carol
Posted 7/17/2010 5:48 AM (GMT -8)
This has been a strange summer for me. My daughter is getting married in two months so she and I have been busy working on plans for that while at the same time I'm in bed recovering from my second foot surgery in 6 months. The surgeon wants me to be extra careful because the bone didn't fuse last time, so he has me in a cast and wants me to keep my foot up for several weeks. I'm being a very good patient because my feet are very important to me! So it has been a summer of air conditioning, not much eating, (which is a good thing), a lot of knitting, and more TV than the law should allow. My girlfriends come over and bring me lunch or knit with me, and I've been able to spend lots of time with my daughter.

My lupus is real quiet and I've been off prednisone since December. Still take plaquenil and other non-lupus meds, but am real encouraged by this. Like you, Lynn, I've lost so much muscle tone. Just hope that at my age I can regain most of it.

Prior to my surgery I was going to a physical therapist twice a week and it was helping me with my muscles and my energy, and I can't wait to get back to him. He has a gym set-up so it's like having a personal trainer and letting my insurance company pay for it. Not a bad deal.

My very best friend (since we were 15) has a type of rare lung cancer that has no treatment. Watching her and her positive attitude and caused me to look at things differently. She isn't letting anything keep her down, and her spirits and attitude are inspirational.

I guess you could say I've been taking a break from the forum. Sometime it's nice not to think about my health issues for a while.

I'm glad everyone seems to be doing as well as can be expected. Thanks, Amy, for the post.
Posted 7/17/2010 1:24 PM (GMT -8)
Hi all, I haven't posted in a little while.....my rheumy FINALLY says I definitely have lupus! I had a positive ANA titer of 1:160. I'm not happy about having lupus but am glad to have a definite diagnosis after the back-and-forth yes-you-have-it/no-you-don't dance that he and I have been doing for the past several months.

I'm still on prednisone and Imuran, but my rheumy lowered my pred to 10 mg and raised the Imuran to 150 mg per day. My Lyme doctor is happy about that, because Lymies are not supposed to be on steroids! But I don't know if I will be able to ever get completely off the pred. Still, less prednisone is always good!

I've moved to the central coast of California....it's much cooler and cloudier here and my lupus and Lyme symptoms seem to flare in the heat and bright sunlight of southern CA so I'm hopeful that this move will help prevent flares. We are losing our house back in SoCal because my insurance won't pay for one of my Lyme meds (IV Rocephin) so we had to make the decision: mortgage payment or medicine. When our mortgage company suddenly informed us that our payment would go up by $650 per month starting in July, it was a no brainer! Our rental house at the beach saves us more than $1600 per month, which helps some towards the $2200 monthly price tag of the IV Rocephin + visiting nurse + IV supplies.

I'm still working part-time over the Internet, but don't know how much longer I will be able to do so. I just feel so overwhelmed sometimes; just doing what I need to do right now for my illnesses...getting to doctor's appts, figuring out what to do with/when to take all my meds and herbal supplements and probiotics, fighting with Blue Cross....all of that feels like a full-time job anyway. I don't have time to work because I'm too busy being sick! sad

Anyway, I hope that everyone is having a flare-free day today! Thanks Amy, I'm glad you asked how everyone is doing.

Take care,
JoAnn
Posted 7/19/2010 5:23 PM (GMT -8)
Thanks from me too Amy for asking the question, "How are you?" to so many of us. Over the past fall and winter, a bit in the spring too I was checking this site regularily, and I have to confess I haven't been as of lately. It just seems that I've kinda of taken off with life for the first time in quite a while. I was feeling darn aweful all winter 2009 (like a lot of people on here, I know). It was my worst winter yet out of three, and I had been experiencing a lot of new symptoms for me. In Feb I started on Imuran and was really scared to pop the first dose. I'm glad that I jumped over that hurdle though, 'cause it's helped me so much. My rheumy (I really really like him and am thankful for him) had told me, "Let's get your life back!" and let me tell you of the difference it's made.

I wasn't able to walk 5 min without huffing and puffing and being completely fatigued. I was feeling arthritis pain in all my joints, and my hair was falling out, I had no circulation in my feet, etc...I won't go on with the list as that was then. NOW my hair is growing back in my three bald spots (which I worked sooooo hard to hide), my fatigue has almost completely evaporated, and my favorite part is that I have been able to successfully build up to going for long walks quite often. I have been walking about 4-5 days a week. about once a week I'll go on a walk for over an hr (the longest being 1 1/2 hrs). Going from not even 5 min and I was wiped for the rest of the day, to that...now I have something to be thankful for. No, my work isn't perfect, nor is my health picture completely normal compared to other people...but who cares? I can get out and be a bit active without pain, which I LOVE LOVE LOVE!!! I just wanted to share that. I aim to enjoy it to the fullest while I can. I hope that it's long lived and that the medicine works for me for years to come. But if it isn't, I don't want to be saying to myself, "Why didn't I do that when I could?" Ya know?

I hope for those of you who are feeling aweful, that my post gives you some hope. Last winter I didn't think that I'd be out walking again and a bit physically active, and here I am...enjoying the fresh air..of course avoiding the sun like the plague (as the rest of you do too I'm sure), but lovin' it with a passion. Have a GREAT summer everyone and I'll be popping in from time to time...

Ellie
Posted 7/20/2010 3:09 PM (GMT -8)
Oh it is so good to here from all of you!! I am so sorry I can't respond to you each individually but I am so exhausted when I get home. I have been having to work 10-12 hr days to fix a big problem at the beginning of the month when our accounting program crashed. I do read what you all say and am so happy to read such good things :)!

I hope the people who havne't posted will post soon if they are lurking around out there!! I know I sure do miss you all but am taking it as a sign you are enjoying the summer!
Posted 7/24/2010 2:16 PM (GMT -8)
I havn't been posted for ages.  I was dealing with my own health problems and had no mood at all.   The good news is I am getting better.  

The Cellcept I am taking rocks.  My lupus is quiet down for more than half a year.  I am thankful.   My pred is now reduced to 2mg, which is a miracle for me.  From the past, when the pred is reduced lower than 2.5mg, a flare will usually happen, but not this time.  I think the cellcept does the trick.  My rhumty is aiming to get me off totally from this cold turkey, and I am looking forward to it.  Afterall, I had been on pred for ages (almost 20 years).    By the way, my rhumty is great.

As for my injured spine (due to TB), I will continue to use a cane for good.  Well!  At least it's better than sitting on a wheelchair for life. 

I am satisfied because there is hope for me to get off the cold turkey.  Keep fingers cross.

Posted 7/24/2010 7:24 PM (GMT -8)
Its nice catching up with so many members. I've been doing relatively well for a couple of years. I know my early warning signs and I'm pretty careful not to overdo and really careful about the sun . . . but I'm wondering if getting beyond menopause has also been part of my feeling better. Not sure . . . but I'm really thankful for being up and around more. I hope everyone here has better times ahead too! Blessings!
Posted 7/25/2010 3:26 PM (GMT -8)
A positive note is I've walked 10 minutes every day since April only missin one day. I went to an exhibit at the art museum and another at the natural history museum. I don't count any of the extra activities as my walk.

My daughter introduced me to her church before she went on trial run move to FL. I enjoy the church. A chronic illness support group has started with me and 2 black men- one with a kidney transplant and one HIV +. We hope to have more join, but these men are great to/for me.

We adopted an orange tabby manx cat whom we named Bob. Unfortunately my 17 y/o black cat Cosmic and my 10 y/o ragdoll Minuet both passed away. While my daughter was away we took care of her 2 pomeranians, 1 cat, & 2 guinea pigs. Move didn't work out and daughter now has her cat & dogs. I kept the pigs. One is B&W with a long piece of black hair across his face- Elvis. The orange pig was named Costello, but I've taken to calling him Little S**t. Don't get me wrong- they're really cute. 

As for my health I had swine flu (don't tell the guinea pigs) and had pleurisy 3 times this year. I had sinus surgery which was a big help. Rheumy thought it might help my pleurisy, but it didn't. If I drop my pred below 8mg the pleurisy is back. Currently at 8 mg I'm flaring, but no pleurisy. My docs have approved for me to get gastric bypass surgery- just waiting for Blue Cross. It won't be a problem cause of my high blood pressure & diabetes. I continue to see my therapist and psychiatrist to keep my mood somewhat normal. Cellcept helps keep my CNS issues in check. It's great reading how y'all are doing! Love, Butterflake

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