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It was a real shock to my system that I had developed a 'chronic illness', a disease so painful that it would bring me to my knees (in my case it is PRA)
Early days PRA took away a lot of things & absolutely controlled every thing I did; life as I knew it was over .. I was in excruciating pain, that hit me when I least expected it, & nothing a doctor prescribed helped. I guess what threw me the most was the attitude of the rheumies I was referred to; they all agreed on a few things, the first being that my my life would change (for the worse), the second being that they didn't have any answers to why I contracted this disease or how to control it, then the thing that really threw me was the knowledge that they didn't really care: they didn't care what I had lost, or what the disease was going to cost me in the future & they appeared to have no sympathy for the agony I was suffering; to them I was just another patient who had an AI disease. I left their surgeries despondant & troubled.
Over the next few weeks I decided to do 2 things; firstly, research the disease I had & find something, anything that may/could ease the pain & 2ndly, pain or not, made a choice to resume many of the activities I was previously involved with & if I had a bad day & couldn't continue with it, so be it. I was not going to apologise for the symptoms of a disease I had no control over.
Searching for information gave me some purpose. I was lucky enough to find AP along the way & a group of people I could turn to to help me through those first troublesome times we all know about – ie herxing & what to do about it, finding the right dose of meds etc. It has been about 1-1/2 yrs since I started my AP journey & although it has been difficult at times I am still very happy with the treatment path I chose, my numbers have stabilised & mentally I am still on track to reach my goal.
As difficult as it is, I believe an important part of this journey is how you personally handle the disease, along with its terrible, painful, sometimes destructive symptoms. There is no doubt in my mind it is up to me to maintain both a positive & determined attitude &, for me, that translates into my current mantra which is 'I will not let this disease control me, I will control it'. 😉
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
Well Said Maz, absolutely agree. Must be the weather the last few weeks I feel I am beating this thing, mentally I feel really strong and physically getting better bit by bit.
Cheerio
Annie
ps – I think the holiday helped. In fact holidays all the time would be a cure.
That was BEAUTIFULLY said! It brings tears to the eyes!
Your positive and determined attitude shines through your words!
You are a definite role model for us all!
Best of strength and blessings to you Maz.Aust not just today but all the way through your complete and total recovery!
MMW
[user=534]Annie[/user] wrote:
Well Said Maz, absolutely agree. Must be the weather the last few weeks I feel I am beating this thing, mentally I feel really strong and physically getting better bit by bit.
Cheerio
Annie
ps – I think the holiday helped. In fact holidays all the time would be a cure.
Lovely Annie, glad to hear you are feeling so mentally strong. It shows in your words how well you feel about your own situation …. 😉
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
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