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16/05/12
What can I say, it’s a month shy of 4 yrs since my journey with AP began.In the beginning I knew absolutely nothing about my disease/s and even less about AP, but month after month with the help of all the people on this wonderful website I actually started to get it. I started to understand how AP worked and more importantly my role in my own journey, what I could do to help myself! I will never forget those (& yes you know who you are) who held my hand & guided me down this path, you are etched into my memory forever.
I still remember the intensity of the pain when I flared, up night after night pacing the floor, then when it passed wondering when it would happen again. My disease is not bilateral, it travels and sometimes swelling is involved. One minute it was the back of my hand sometimes swollen so badly it looked like it would burst, then 20 min later my hand was perfectly normal & it had travelled to attack my thigh or my arm or back or triscep or biscep and so it went on. I must admit I hated this rotten disease with every ounce of my being. The unpredictable timing of the flares, the excruciating unrelenting agony, the disease decided where to attack, how long it would last & how frequently it would happen, I had no control over it whatsoever and in what can only be described as a very short time had taken so much of what I knew was my life.
Yes I still, around every 10 to 12 mths, have a mini flare that lasts perhaps 3-4 hrs, but nowhere near the intense pain it used to be.
I am still on AP, still taking my abx. My goal was to be in remission within 3-5 yrs, yes I still want that, but I think of that goal as a perfect situation; if it comes to pass terrific, if not too bad. I now realise, just like a diabetic with their insulin, if I have to be on abx for the rest of my life to feel this good again I don’t mind. For most of the year I am asymptomatic. Now I am looking forward to the rest of my life and I can tell you it’s looking very good.
Thank you to everyone here,
Thank you to the inventor of abx,
Thank you to the doctor & naturopath who look after me,
Thank you to whomever gave me the courage to say no to the specialists & their conventional medications.There is no doubt, that for me, I chose the right path.
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
Dear Maz.Aust,
Thank You so much for the encouraging post! I am so happy for you that your body has healed and is STILL healing from your RA. I spoke with a former Road Back member recently and he said that even at the 7 year mark he continues to get better and is very well these days even though he still takes abx. He said life was very good and he had just purchased a motorcycle at age 70! I say that’s real improvement after years of pain! 😀Susan
Hi Maz — nice to hear from you again — it has been awhile. Glad you are still thriving. I am pretty much in the same place you are. For the most part, I feel great, and live a normal life. There are clearly some issues still and my RA has not disappeared. But it is well managed and I am very grateful
Stay in touch! It’s good to hear regularly from the folks who are doing so well.
Bonnie
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Dear Maz.aust,
So encouraging…and yes, you, are the reason why I’m on AP and two years into it. You are the one who ‘plucked’ me out of the ditch from across the other side of the world. I still say to this day, I don’t know where I would be now had it not been for you. You were/are my inspiration to make this journey; you held my hand; and now you are such a dear and cherished friend. You rocked my world, girl! 🙂 Talk to you soon.
We have so many terrific people here caring and sharing. Without all of you…I would be in a very bad way. Two years ago, I was housebound, unable to walk. 🙁 In two days, I’m going on a cruise. 😀 I’m glad too that I didn’t listen to the specialists — that I did my own homework. I’m now patiently walking the road to wellness. I hope and pray that in two years from now, I will be in the place you are now. Thriving, accepting of my illness, courage to continue and keeping a brave spirit about myself despite the odds.
Thank you for sharing Maz. Aust. Thank you to all of you here at the RB.
With much love and thanks,
EileenMaz, I ditto all of the above! Lovely to see you pop by and so happy you are continuing to do so well. As Bonnie said, please stay in touch and keep us updated as time goes on…in the meantime, get out there and enjoy every pain-free second of this wonderful life. It doesn’t get much better than this! 😀
Eileen…safe voyage and enjoy every minute of your cruise! You’ll have a great time!!! 🙂 Wish I could pack myself into your suitcase and come along.
Maz,
So happy to hear that you are doing well. AP is a long haul but definitely worth it. Thank you for sharing!
Thanks everyone — I don’t come in very often any more but think of you guys every week, I think back to where I was at & where I am now, it’s just wonderful.
I will pop in every now & again, for a long time I think, so don’t think you can’t get rid of me that easily 😉
Hope everyone is well and better than they were yesterday,
Maz
ps – welcome BonnieLou to your new role here at the Roadback, I have no doubt you will do a great jobDec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
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