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Great idea Randy!
When I started AP, I felt really well. I had positive bloodwork with a few symptoms. I had to start off really slow because I was sensitive to minocin and had bad herxing. Therefore the results weren't quick or dramatic for me. I did have some really bad days in the beginning. My heartburn was awful. My digestive tract was starting to be affected and my muscles and joints were always sore. I was also very tired. Mentally I was a wreck (you guys probably remember some of my earlier posts). I even had to go on antidepressants.
Now it is a year later and I feel like I am improving. What's more important is that I feel like I am NOT getting worse. Mentally I am in a much better place. I am no longer on antidepressants. And I recently started playing hockey again which is a huge deal to me. I have played for over 30 years and it is my university varsity sport so I am thrilled. I play a bit of soccer (indoor) again too which I also love.
I still have bad days but I seem to have more good days now. Whereas before I felt bad every single day. When I do have a flare, it doesn't seem to last as long either. And I've even had a few days where I felt like I did prior to SD. So I feel like I am on the right track. I continue to use my sauna, get enough sleep and avoid any foods I am allergic to. As Kim would say, I'm doing “whatever it takes” to get better.
I am so very grateful to all of the wonderful people on this Board for getting me started on AP and for the advice and encouragement along the way. Thank you!
What a wonderful idea Randy!
It is so difficult for me to talk about this without bursting into tears. I have A LOT to be thankful for right now. A year ago, I was in the WORST place I could possibly be-afraid of what was happening to my body, and honestly made peace with the fact that I was dying. When I look back at how bad it was, I'm amazed that I even made it through a single day. (much less almost a year of pain!) Then came the Road Back Foundation, all the support and advice I got from everyone, and I'm happy to say that I'm almost in remission. The skin on my body is almost normal, I'm active, happy, and there are many days that I don't even feel sick at all. I have no doubt that I will be back to my old self in no time. I feel like all of you are my angels, and I personally believe that you were put in my life to help save me, at a time when I wasn't strong enough to know what to do. AP has given me my life back, and I'm so grateful for that. It hasn't been an easy road but, I've never looked back since I found AP. I can look at myself in the mirror and honestly say that I've beat this disease, and I can see the old Maria coming back. God bless each and every one of you, and THANK YOU a million times over for being there for me.
Maria
Great idea Randy! We all need encouragement and these types of posts are the kind that lift us up and keep us moving forward on this journey.
Everyone knows my mom's story because as they say “I am an open book.” I believe in transparency, humility and truth. All of these things will set you free. I guess that's why I get so frustrated about the lack of AP physicians, lack of knowledge about AP for all those suffering people out there and those that could get better but don't because of the secrecy, cover up and corruption in our medical society. I sound like I'm paranoid and a conspiracy theorist – I guess I am. We have become very jaded and its a damn shame. I weep for those out there (especially on that Inspire board) who for whatever reason are not getting better, will never get better and have given up.
Because of all of you, we have become fighters, optimists, AP touting cheerleaders and have taken control of our own medical treatment. I can't tell you all how grateful I am for you!
My mom has a long road still ahead of her. BUT, we are prepared for that road, we are patient, we are faithful and we are Praising God for the progress she HAS made.
My mom has been on Minocycline for about 6 months now and in that time we have had ups and downs. But as I write this, there are way more UPS. Unfortunately the scleroderma got her kidneys but it did not get her spirit or her fight. My mom is VERY sick. But, she's looking more like herself, mouth is not as drawn, her skin is healing, her stomach is better, she has more energy and we continue to notice improvements every day.
We look forward to beginning Zith in a couple of days and hopefully Clindy IVs soon.
Blessings,
MichelleHi Everyone,
Okay, it's my turn. What can I briefly say?
In general. I am doing tremendously well. Okay, perhaps I should say a bit more.
I tell everyone (who asks) that “I am improving and getting better every day!” That is my standard answer, no matter what.
Hey baby, you can lay me off because I have a serious medical condition (happened!); I can get another poke, another series of IV sticks – in fact I'll take a hundred or so…(happening!); I have to pay a couple of tens of thousands of dollars out-of-pocket, even with decent medical insurance (continuing to happen); I use a matrix to keep track of and properly take the ridiculous amount of needed daily sups and meds (you need a technical masters degree); I use detailed graphs to follow many blood test values (I know what's going on, and the docs know I know); I am in charge of my own improvement (it's not my fault that I got SD, but it is my responsibility to get better); I should rent out my ivory white icy cold Raynauds fingers for waking up little boys to go to school (they work great!); my Peripheral Neuropathy is under control (thanks to some Lyrica) and I'll soon beat it too; the bottoms of my feet and hard surfaces do not get along (but I can do cardio on the Elliptical Trainer and a bike); I will do “The Escape From Scleroderma Triathlon” with Maria and Jessie (This is just one goal!); I will be able to run again (the squats are helping my knees, and it's fine that I currently look 90 when I try to run); almost all my hair is back (soon my armpits will look like Capt Kirks!); I'm lifting more weights and can stretch without feeling tearing pains (the SD is rapidly fleeing my body); I can sweat (though I don't stink like Kim talks about); I will return to playing a decent level of squash (last month I was able to swing the racquet again, hit balls, and even beat a Laywer in my first match back on the court – watch out you Aussies!)
I can go on and on.…
I may never be totally out of the woods, but I am not content with not being back to normal. I will keep doing the best I can to continue improving everyday. Meanwhile, aren't we all getting such great encouragement from so many terrific fighters here on this BB.
Yes, “I am improving and getting better every day!”
Oh yea, “Blast the Bastards!”
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Randy,
Another perfect example of why I ALWAYS look forward to reading your posts!!
:roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh:
A HUGE THANK YOU for sharing this with us!! I look forward to hearing more about your progress in the very near future!
Keep it going!!
Connie
Geeeeez Randy you make me laugh and you know what they say about laughter…it is the best medecine.Along with all our great volunteers I was to thank all our resident clows such as you,Connie,Patty ,my darling dizzy Lizzie,Kimmie and a few others that I can't think of at the moment.I wish you all could understand French as English is so cut and dry and I have a terrible time expressing how I feel.
GROSSES BISES…I think you all understand that,if not,go find a dictionary. hehehe[user=31]Lynne G./SD[/user] wrote:
Geeeeez Randy you make me laugh and you know what they say about laughter…it is the best medecine.Along with all our great volunteers I was to thank all our resident clows such as you,Connie,Patty ,my darling dizzy Lizzie,Kimmie and a few others that I can't think of at the moment.I wish you all could understand French as English is so cut and dry and I have a terrible time expressing how I feel.
GROSSES BISES…I think you all understand that,if not,go find a dictionary. heheheWell, I have to confess I had to “look it up” and it means “many kisses”. Very sweet and just glad it wasn't something that needed to be censored. :roll-laugh:
Grosses bises to you too……..kim
[user=223]Randy[/user] wrote:
I may never be totally out of the woods, but I am not content with not being back to normal. I will keep doing the best I can to continue improving everyday. Meanwhile, aren't we all getting such great encouragement from so many terrific fighters here on this BB.
All I can say, Randy, is that you better be doing all you can to get better if I'm going to put my money down on Team USA for the “Escape from Scleroderma Triathalon”! You know those Aussies can be insanely competitive. 😉
Glad you're getting better. 😉
kim
Hi all:
I just wanted to add this link to this thread. Take a look if you have a second.
Cheryl,
Jessica looks SO happy and SO beautiful!! Tell her congratulations–she is such an inspiration to us all.
Maria
[user=2]Cheryl F[/user] wrote:
Take a look if you have a second.
Hi Cheryl–
Jessica is beautiful on the inside as well as the outside. You must be so proud! I am glad I took that second to view the video :).
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Kim said:
You know, it's funny when I see a new doctor who is doubting my story of getting better from SD using abx, they always grab my hands for the “cuticle check”. As soon as they see my shiny cuticles, they take note and may throw me a bone saying something like, “well, they've heard of a few people it's worked for.”
Kim, i have always wondered about the cuticle thing. This has been mentioned here before so i guess it time to ask. What does one see with cuticles and SD?
Just curious!
Cheryl, I'm so proud of Jess and she's not even my daughter, so you must be just beaming. She is truly amazing!
Casey, SD, being a vascular/collagen disease, does a lot of weird things. One of the oddities is we get shiny cuticles, it's something to do with damage to the capillaries in the nailfolds. My cuticles are so sensitive to touch that I cringe at even the thought of a manicure. At my hair salon there is a manicurist and I can barely stand to even watch others have manicures. 😯
Take care…..kim
If my idiot Rheumy #1 or #2 knew what to look for with SD and knew the benefits of AP, I could have started AP within 2 months of my first symptoms, which included the fingertip drop loop capillaries. Rheumy #1 was a total idiot! Well, I feel better now….
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"
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