My Very Positive Blog!
When I was diagnosed I searched desperately for any hope, then I found the NRAS HealthUnlocked site and I found hope from many of its members, one member in particular, Gina, especially as whenever I read her blogs I always felt uplifted. She achieved remission albeit a ‘chemically induced remission’.
Last November I was lying in bed, beautiful Baby Amy just 3 days old in my arms, snowing heavily outside, listening to the radio waiting to hear if the local primary school would close due to weather: it was, so my 10 year old son would be home with us, along with my husband; we were all together at home and snug for the day. A lovely song came on the radio and I had a cry as I was so very happy and content and my life felt complete.
5 weeks later I woke up in the middle of the night, I was in pain everywhere and couldn’t move or get up; this had been building up for a few weeks, I already had my phone beside me so I rang my husband who was on a night shift. I was so frightened in case Amy woke up and I couldn’t get to her; he came home straight away, rang our local A&E who prescribed some strong painkillers to help me through the night. That was our lowest point, we both thought this what our lives were going to be like from that moment. I was waiting to see the rheumatologist but my doctor had confirmed that it was very likely that I had RA, maybe this was due to a Rheumatoid Factor result of 1200 (when 400 is high and confirms RA there was no doubt).
The following weeks were terrible, there was so little I could do. When my husband went to work each day I faced the difficult challenge of looking after Amy; she wore pyjamas constantly as I couldn’t cope with poppers, I used my teeth to undress/dress her and always had to leave it to my husband to bath her. The few times I did get out of the house were to go to the doctor’s. I’d sit in the car with an ache in my heart to see mums out pushing prams and I remember seeing a mum on her bike with her baby in a seat: I was so jealous, envious and heartbroken as that was something I had dreamt of doing. Most of all I was scared - what was going to happen when Amy started crawling, walking and just getting too heavy to lift?
At the end of February I saw the consultant and even before I sat down he shook his head and said it was RA: he continued to assess me, gave me a DAS score of 7.6, followed by a couple of steroid injections and a combination of meds; Naproxen, Methotrexate, Hydroxychloroquine and Sulphasalazine, all to start at once using the step down method where they treat it aggressively; he would see me in a month.
The following night I bathed Amy.
I’ll skip a few months to July, I was feeling much better, not great but I could do so many things for myself now; my DAS score (Disease Activity Score) was at its lowest at 4.6 so in my consultant’s opinion not good enough, so I was started on Enbrel in August.
4 weeks later I realised I wasn’t hanging over to get undressed, then at 6 weeks I noticed that after walking a little that my limp was gone, I could open tins almost; 8 weeks I can peel an apple, not struggle with getting Amy in an out of car seat.
10 weeks later – In the last week I have worn a small pair of heels to go out for coffee(!) had a bath myself (after getting stuck previously I was too scared); danced around the house with Amy in my arms and wait for it ... have been out cycling with Amy happily babbling on the back!
I saw my consultant last week, I didn’t ask him what my DAS score was this time; I know I’m doing better than I ever hoped, I only have a few swollen finger joints, maybe some aches but nothing to complain about. I am so very lucky and live every day feeling thankful that for now my meds are working.
I truly don't know how I would have coped without NRAS: I rang when I was first diagnosed and got support from a lovely girl who let me have a cry; I asked her lots of questions, she listened and sent me out additional information which really helped not only myself but my family. I have had information for so many things including footwear, diet and exercise, and getting back to work (my employer also has the booklets) but what I have found the most important is information about medications available and to read of research into future medications is very comforting.
Thank you very much NRAS!
Winter 2011: Angela Paterson