Hi! Long lost stranger here...
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| Thu, 01-26-2006 - 5:18am |
Hi everyone! I have been lurking for so long...keeping up on all of you as much as I can...but I thought I would uncloak myself and say hi!
Amazingly, I have been doing great. Last July, I switched to a combo of Arava, Enbrel, Plaquenil, and Mobic and I have been doing better than I have since diagnosis. I have completely stopped taking Prednisone. I was taking 100 mgs of Kadian (slow-release morphine) and 10 mgs of oxycodone daily and I am down to 60mgs of Kadian and NO oxy! I have been able to exercise more- I am up to 2-3 miles 5 days a week walking or doing a low impact walk-aerobics video. I have lost 27 pounds since last summer and I am amazed!! I know...sounds like a sappy Enbrel commercial that I hate so much. She gives herself one shot and heads out for some mild rock climbing or white water rafting!! LOL But really, my rheumy is amazed as well. I really didn't believe that the FM could get better with exercise because my joints were so stiff I could hardly move...but it is really helping me control my pain. I still hurt...especially in the morning of course...but it is far easier to control now. I have permanent joint damage in my ankles, toes, fingers, hips, knees, neck, jaw etc that still causes trouble but it is slowed down much more and I haven't lost any more range of motion lately.
I have the makers of MTX to thank...I switched to the Arava combo when I could no longer get MTX injectables very easily. I had tried Arava alone with no success but it is strange what the right drug cocktail can do.
At my worst, I was taking 35 pills a day and giving myself several shots a week. I am down to 15 pills a day and 1 shot a week. I am thanking God everyday and I hope it lasts. We had completely given up the idea of having any more kids as we have fertility problems and would need to be off my meds for a bit to try and get pregnant but after this, we are considering it since we know what works and can go back to it after the baby or if we are still unable to conceive. I am going to wait until I have felt good for a year, and then we will see.
I don't like to push stuff on people but if you are looking for a video that is a good workout that you can adjust to mild movements and NO jumping at all...I have been using Walk Away the Pounds by Leslie Sansone. They come in 1 mile, 2 mile, 3 mile etc...and you can be as gentle or as powerful as you need. My mom turned me on to it...she started it to help with her osteoporosis as she needed to exercise to slow her bone loss. It really makes me feel good and I don't get sore afterward. OK...I am off my soapbox.
I hope you are all doing well...please respond and catch me up on what you have been up to!!
Heidi

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Hi Heidi,
I am so happy that you are doing so much better!! Hooray!!! I know that when I was exercising, my FM was much better. My treadmill is in the garage and when it turned to winter, I got lazy and now it has been a year and no exercise. :o( I have osteoporosis now and I should be exercising. I will look for the video you mentioned, I need some incentive!
I am doing fine for having these problems. Julia will be 4 in 2 months, Emily is 4 months. Donna is in love (fingers crossed here)and her jaw is feeling much better, the rest of us are doing well.
I am still on Enbrel, MTX and Plaquenil. It is still working for me. Enbrel seems to be such a miracle drug for so many people. I do not care for those advertisements either!!! Heehee!!! BUT... I would not hesitate to try Enbrel, if any of you are contemplating taking it!
It is so good to hear from you. Don't be such a stranger! I am praying that another child is in your future.
Love & Hugs,
Vicki
Hi Sis!!!! I am so happy to see you post. You know how proud I am of you for losing weight right? It is awesome. As far as getting relief from your RA even if it is just a little I am grateful. You have needed a break for a long while now. GL
Heidi, I'm so happy for you, I'm doing the dance of joy!!!
Molly
Dear Heidi,
Well it is nice that you have come out of the closet.....and are not lurking anymore. it can be a bit lonely in the dark. So if you disappear for a long time again I will just whip out the big torch.
I just dont know how to respond to your post, other than I am so sad that your joints are just as rat-**** as mine. But happy that you have lost weight, whilst I am still thinking about it. Walking for me for exercise is now outta the question as the cartlidge in my toes is gone and my bones are flopping around and causing me think about chopping them off everyday.......My sister asked me tonight could she do anything for me, I said new feet..So she is going grocery shopping in the morning and going to get me a new pair for a present and post them up..Looks like next week might be a good feet week.
Apart from my feet my other joints are deteriorating at a slower pace, and I am starting to slowly get tired again all the time.
But on a brighter note the Roman Colosseum has deteriorated rather a lot over the centuries and its still standing, so no reason why we wont be in a few decades.
I am sorry that the disease has cast a shadow over your having more children at present, and it is just a damn shame that sometimes the price of having this disease is so high.
Well that is it from me, I am off to bed to dream about new feet. See ya soon and dont be a stranger Heidi, because it is people like us and our "joints" that make this board what it is. Lell.
Lell-
You always know what to say to make me smile! Let me know how the new feet go...I may be interested in a new pair myself fairly soon!! LOL I'm sorry you are having a rough go as of late...I think I hate my feet hurting the worst cause I can use only one hand if I need to but I tend to fall if I only use one foot! My cane is currently in my closet though and I hope it stays there for a while.
My friends at work comment frequently how much better I am getting around. I had to use a cane (an electric blue forearm crutch- had to at least make it pretty) for almost 2 years just to be able to get through at work. I haven't used it except a few days since August and that is a minor miracle. I'm not selling it on ebay just yet though... I used to need both crutches just to get out of my bedroom in the AM now I just hold the walls and stumble for a bit to get the juices flowing. My AM super stiffness is down to about 30 minutes instead of hours if it ever went away at all. I still have the best individual rendition of "Snap, Crackle, Pop" of anyone around though...just stand near me when I have to pick something off the floor! Someone once said they would make a great one woman band...I think I would too! LOL
Thanks for brightening my day, Lell.
Heidi
Hey Vicki!!
I was so excited to hear about your new granddaughter!! I hope the pregnancy wasn't too hard on Brian's wife..I know she has had a rough time before. What a lucky Grammi!!!
I have to say...I am usually not an exercise freak...never have been much since high school. But I really like the lady who does these videos. She shows you how to modify things to make it easier which is really important for me. She also has a couple of videos primary for the older adult...which would probably also be good for those of us who have joints just like an "older adult"! LOL I have so far just been modifying her Walk Away the Pounds Express and Abs videos and it has worked well. I don't do good with treadmills...I get bored or get tired and can't seem to stay motivated. It helps to have a person pushing me along.
I have really missed you guys here...I really need to stop by more...Maybe I will bring some Virgin Pina Coladas for you all for my next rheumy appt in February! I can't wait to get on the scale for him...he is gonna be amazed! I haven't seen him since September and while I was doing better, I have lost more than 20 lbs since then. He is so wonderful and has never talked at all about my weight. He just encourages me to eat healthy and stay active as much as I can. But I am excited to show off a little. I am no little thing yet but you never know!
Heidi
Hey you!!
I have to tell you something cool. Tonight, we had a whole unit from Elmendorf AFB shipping out to Iraq at the airport in ANC where I work. I just couldn't help myself...it made me think of Rick. So, I got on the PA before we boarded their flight and asked everyone in the boarding area to take notice and take a moment to say thank you for their sacrifice. They got a huge round of applause and a lot of pats on the back. A couple of the guys were a bit choked up and one even came up and said thanks- it made it a little easier to leave home knowing that his country and the people in it cared. It was the best. Even though I can't thank Rick and his unit directly...I could thank these guys. I don't think I could handle being without my husband and because these guys are willing, I don't have to worry about that. I can feel safe and enjoy my freedom. It is a most wonderful blessing. Thank you for your sacrifice. I pray he is safe and well and returns home soon safe and well.
I'm trying not to get too excited about the thought of another baby..it really is still a few months off and the fertilty treatments may not be successful. However, the doc said we have a good chance because we did conceive naturally once together and she was healthy and I had a fairly easy pregnancy. We aren't going to start slow...we are just gonna go for the gusto and do injectable medication and IUI. Can't really afford IVF but we will see how far we decide to go. I don't want to be off most of my meds for a long time TTC so we will give it a few months and if nothing happens, we will look at adoption instead. I just figured since I am doing better that I would just love to be PG one more time. Not much can rival the feeling of your newborn on your tummy straight from heaven.
I hope Jackie and Laura are good and liking it in Georgia. Get in that pool girl...I bet it would be great for you and feel good too!! Love ya...
Heidi
Molly-
Thanks for the hug! I can always use one...even if it's a cyber one!! LOL I have found that I really love to walk too and this has just added to it. When it was warmer, my daughter and I would go walk around the neighborhood but today it was -14 so NO WAY am I going outside for much!! LOL I have even got my husband doing the videos with me and although he laughs a little sometimes, he gets a good workout. He does things a bit more intense then me but I am getting there. That is the nice thing about these ones...she shows you how to do it gently and more powerfully and encourages you just to keep moving- even if you need to do it more gently.
Your floor sounds beautiful! We are in a constant state of remodel at my house. Seems we can hardly finish one project before we jump into another. Someday we will have it just the way we like it...probably the day we list it so we can buy a bigger house! LOL We had a great Christmas too. We spent Dec 25-30 in CA at Disneyland and Six Flags and San Diego Zoo. Boy am I glad I am in better shape. It was a lot of walking but I made it ok. I took my cane just in case but didn't use it too much. I just came back to the hotel for the hot tub each night! My husband, daughter, and I met my mom and dad and 2 of my brothers there and it was a lot of fun. Busy...but great. The holidays wouldn't be great without our friends and family.
I did have one other thing happen that I am thrilled about this summer...my best friend bought a house just 2 doors down from me! She is a wonderful help and support for me...couldn't survive with this disease without her. I am a truly blessed woman. God must love me a ton! Glad you are hanging in there...you have been such a wonderful CL for this board. Keep up the good work!
Heidi
Molly
Heidi, you deserve to show off with a 20 pound loss!! That is wonderful!! My dil, Kate, was not put on bed rest this pregnancy. She had gestational diabitis and was feeling contractions from the 7th month on. Much better than 4 1/2 months of bed rest!!
Hugs,
Vicki
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