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  • #300047
    GayG
    Participant

    Hello everyone! Even though I should have kept a journal of all of this I didn't so I lost some of the dates and events of things…but I have been seeing some turning around of my illness and it's reversing faster than I thought it would…I just completed 9 months of oral minocin (I also did 10 days of IV clindamycin last October with Dr. K. in Lufkin).   I also tried Cellcept for a short while but after a horrible bout with an upper respratory infection I decided not to continue with the cellcept and am improving without it anyway.

    It hasn't been that long ago, maybe a month or two that my legs were very tight and pulled when I stood up.  The pain was terrible most of the time and I took Oxcycontin for that which helps but not 100%, the pain that was left I just dealt with.  I couldn't do my own pedicures, put on my socks or tie my shoes.  I could dress myself but if I was tired I would have to have help.  I would most of the time need help getting my left arm into the sleeve of my coat.  Travel of any kind was out of the question.  Mornings were rough since I had trouble getting out of bed and getting ready w/o breaking out in a cold sweat and if I didn't sit down I would have passed out.  After several of those episodes I could then usually get going and finish the day. I had some fatigue but never had a really bad battle with that but the majority of the time I just didn't feel well. 

    I'm not in remission but these improvements are dramatic to me.  About a month ago (or at least I think it was about a month ago, see I should have journaled all of this!) I started noticing changes and they were enough that I did go to New York City on Spring break and did very well.  I feel better, I have energy but I wanted to wait to make sure I just wasn't having a few good days but it's been long enough now and the improvements dramatic enough that I felt the need to post this….I saw a post recently where someone had stated that over the years and particularly if you include Dr. Brown's 40 years of practice that thousands of patients have gotten their lives back on AP therapy (and some of you, including myself have actually met and talked to some of these patients) but only a few of us post here about our improvements, I find that sad but I can now say to anyone else that I meet and to my drs. (especially my rheumatologist) that this has helped me and can pass on how much it has helped me and hopefully that will help someone else.  

    I'm noticing more and more changes almost daily with loosening up of my legs and elsewhere…I still have skin involvement it's just not near as tight and it's more of a “loosening up” feeling.  It's not anywhere near as tight as it was and my pain level has decreased VERY dramatically.  I went to my pain management dr. yesterday and I told him I haven't been taking the 5 mg doses during the day for a while now and that I think we should start experimenting with “dosing down” on the 20 mg. so he gave me 10 mg. tablets to experiment with.   It feels like the healing is starting on the inside and working it's way to the outside. That's the only way I can explain it since that is how it feels.   I can now do my own pedicures, put on my own socks, tie my own shoes and because the pain level has decreased I can do a lot of other things….what was truly unbelievable to me is the increase in energy and I actually washed my car last Sunday afternoon…Now keep in mind my car hasn't been washed in over a year and it was VERY dirty and it took several hours to finish….my son helped but I did the majority of the work…this would have NEVER been possible even a few short weeks ago.  The first thing to improve though was the swelling, I haven't had the need for the diuretics in about 6 weeks so I guess I'm off that medication.  All recent bloodwork was normal and I've been VERY lucky to not have any involvement of internal organs except a mild case of GERD which Minocin takes care of…I attribute that to the fact that I found out about AP pretty soon after I was diagnosed hopefully halting that progression.  I do know that the kind of systemic SD that I have is not the good kind so I feel very fortunate to have dodged some of those bullets as far as internal involvement.  I just had a PFT last week when I saw Dr. Mayes…I don't have the results yet but if you can gauge how well you did during the test then I can say I feel the result will be normal and I don't have any shortness of breath, etc…..I've also noticed several weeks ago that my pulse rate is returning to normal…It was running between low 90's to 100 or over and now my resting pulse rate can be as low as 75 and normally now runs in the 80's to low 90's with activity so that's an improvement as well……I explained all of this to Dr. Mayes and even showed her how I can touch the floor with my hands now and she's like “that's wonderful”!…I didn't feel the need to say more, for myself seeing is believing….it doesn't take a rocket scientist to know what you have and what it's doing to your body and what would have happened by now, especially since the minocin is the only thing I've taken (except for the short bout of cellcelpt, maybe two weeks of that)….Dr, K. in Lufkin did tell my when I asked her that it's hard to know just how far it would have progressed by now w/o the AP treatments but she said that I probably wouldn't be able to work and for sure she felt that I wouldn't be walking (that much I am sure of as well considering the problems I've had with my legs through all of this)….Anyway, I will keep on posting as the weeks go by in hopes that this may help anyone that is considering AP treatment.  I have “almost” all of my life back (I'm even giving a baby shower for a friend soon and have arranged with my sister to start walking twice a week now that the weather is getting warmer).  None of this would have been possible at all several months ago.  Blessings and healing to everyone! Gay

     

     

    #310953
    Kim
    Participant

    Gay,

    Your story put a huge lump in my throat.  Wish I was there to give you a big hug and, of course, admire your pedi!!!!!!

    I am truly happy for you………kim

    #310954
    GayG
    Participant

    Thank you!…I'm not in what I would call actual remission but am hoping this is the beginning of it…I am certainly surprised by all of this.  I am also going back to traveling for work…we have a national meeting at the end of this month in Minneapolis and I'm well enough to attend that…….If I could send a picture of my feet you could see my pedicure!….it's funny how something like that turns into the biggest thing!  You all are the most caring people I have ever talked to! Love you all! Gay

    #310955
    Cheryl F
    Keymaster

    Gay,

    Between you and Randy, this is a very nice day.  Thank you for sharing your celebration!

    Cheryl

    #310956
    GayG
    Participant

    Thank you! I remember reading your post recently where you had said that a dr. told you that he believed that your daughter did very well because she also kept going and stayed active even through the worst of it…..I have more pain when I'm sitting at my desk Monday through Thursdays to work and then get up from my chair….I have almost no pain at all and have almost the same stamina that I had before I got sick when I'm active, which is one of the reasons the trip to New York went so well….but of course I had to get well enough to be active since I'm not that young anymore (52 this month)..,,but there is definitely something to that when it comes to pain control AND how well we do with SD and of course the minocin AND all the prayer…..I still feel like I'm dreaming that I actually washed my car…..Gay

    #310957
    Cheryl F
    Keymaster

    Gay,

    Yes, several of the doctors, including Dr. T in Boston have said that they think that remaining physically active, without overdoing it is a key element in recovery from Scleroderma. 

    Jess is having a really difficult time right now, the worst mental meltdown I have ever seen with her, because she is not able to exercise or swim.  She had surgery on her elbow a week ago, she has been in a great deal of pain and unable to do much for herself.  This combination of pain, helplessness, and not being able to move to generate positive energy is (I believe) a key point in a persons downward or upward slide with these diseases

    Get out there and go for a walk!

    Cheryl

    #310958
    GayG
    Participant

    I'm so sorry to hear about the pain Jess is having, I'll remember her in my prayers that she will have a speedy recovery from the elbow surgery and will be back out there soon.  She has youth on her side (you have beautiful daughters by the way and I really enjoyed seeing all of the pictures)  It's been mentioned before on this BB but wouldn't it be great if we could all have an annual get-together someday, even if it's for just a day……..I can identify with what Jess is feeling in a way…..I didn't mention this in my initial post because it was already so long but one other thing that snuck up on me that I've never had to deal with in my entire life was “depression”  It's has been with me for a while and started around the time I started recovering from my hospital visits last May….I didn't recognize what it was until my husband said something to me about it.  The first symptom was “irritability” and when he first mentioned it I just said “well I think I'm handling this very well and  I don't think you would handle this as well if it were you since you have trouble handling a cold”….well it got worse and I had to do something about it so I've been on Wellbutrin, much to everyone's relief, for about two weeks.  Wellbutrin took care of the “irritability” very quickly but I have bouts of what I consider at times to be a deep depression and if I don't force myself I could very easily just sit on the couch and watch TV all day and not want to do anything but disappear into the sofa.  It doesn't last long and I can shake it when I tell myself this is temporary and I force myself to get up and get going because to not do that just makes things worse, you definitely cannot become a couch potato w/o paying for it. From some of the posts I've read this depression is part of it and I definitely wasn't immune even though I had never battled depresssion before in my life.   

    That information is just another reason that I don't know what I would do w/o the help on this bulletin to get me through this…I would be completeley lost since the doctors aren't that much help.  They have their very important role in monitoring my care but for the most part I've been learning from the patients here and then going to them and saying”this is what I want to try” or “this is what I need to do”. Thankfully my rheumy is a great guy and very cooperative even though he doesn't believe in AP (or he says he doesn't). He sure gave it to me w/o any argument at all and for that I'm very grateful.  

    There is a big wonderful life still to be lived and my prayers are that everyone (except the ones that have already acheived it) get the remissions we are fighting for and get past these illnesses and on to better days and get back to living it w/o this getting in the way so much!  Love to all…Gay

    #310959
    suera
    Participant

    so happy or you gay.

    ditto on the husband thing, i handle my situation without complaining, never asking for help and hopeful for better days… he plays basketball and gets stiff/sore and complains to ME for days…ugh

    sue

    #310960
    Pip
    Participant

    Congrats as you move more to an actual remission!  Keep up the good work.  You must be so happy!

    Pip

    #310961
    Time_of_my_Life
    Participant

    Gay that is such good news!  Thank you so much for taking the time to share your story.  It really gives us that are new to AP much hope!  I wish you continued success and healing!  Keep us updated.

    Lori

Viewing 10 posts - 1 through 10 (of 10 total)

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