It's been awhile since I have visited. It's been a rough couple of months. I was pretty well during the summer and I actually thought I have turned a corner and perhaps I was wrong to think my Rheumatologist should be more proactive and tell the powers that be that I should have the Rituxamab infustion without MXT because it was the best option open to me; ignorance is definately bliss.
The ever growing swelling in my legs that everyone around me kept commenting on as looking very painful and abnormal, I confidently dismissed as fluid retention due to the unsual hot summer was often met with 'Oh'. Of course this was in response to my GP's explanation as to why my ankles would swell as soon as I managed to get out of bed. As the weeks went on the swelling got worse, it was now from the knee down and wpuld never go down when I elevated my legs. The pain in my legs in particular my right was so bad I could not cover my legs with a sheet. After two months of this and the appearance of a dark discolouration around my ankles that spread pretty fast, the pain was unbearable. It was now August, I had been living with this since June and although I do have a high pain threshold this was definately too much. I called for a GP appointment, there was a three week wait and while everyone said go to the hospital I convinced myself it was fluid retention. It was summer, my birthday, I felt well beside this minor hiccup; I know now that deep down inside I just didn't want to spend another 'summer' in hospital.
Of course that's exactly what did happen. As soon as the GP saw my legs, she suggested it might be a R.A flare or DVT. The paramedics were called and I was taken into hospital. Turns out it was a R.A flare with surface blood clots. It has taken months to recover to whatever a sembalance of living with R.A normality is; my confidence went for a walk, the search party and the missing posters have all been in vain. After steriods and warfarin for a few months now the 12lbs I was so proud I lost was back on along with the fridge and it's contents. Of course what's the first thing the nurse specialist says to me 'you know weight loss will improve R.A symptoms'; REALLY? Of course it's that's easy.
My Rheumy was really surprised (his words) and he can't believe I was trying to walk around with my legs that size. This moved him to start the process to have me infused minus MXT his arguement was I was on Leflunomide and all other treatments he has tried so far has not made a jot of difference apart from the one time I had the Rituxumab infusion. The letter finally arrived and I am due to go in next week.
My family and friends response is happiness, they believe this is the break i need, only I don't feel that way. They can't understand why I don't see this as the genie granting my wish: Be Healthy. Instead I feel all day, every day, pain, sick and tired of false starts and dashed hopes. Missing a life I want to reclaim but it seems so far away it seems damn near impossible to regain the active, confident person I used to be.....
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Paisley58
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It must be sooo difficult when you have long standing health problems to feel hope when the next treatment option is produced. I guess not hoping feels protection against (potential) disappointment. If you have felt so wretched for months you aren't going to suddenly feel buoyed up unless you see evidence of improvement. I guess your friends and family are having hope on your behalf, but i can see you might feel they don't understand. Everyone here will totally understand i am sure. best wishes
Hi Paisley, we’re fools unto ourselves sometimes! 🙈🙈🙈Suffering for weeks before getting help, “I’ve done exactly the same myself,” try not to focus on your weight at the moment it’s not important!. Get your pain relief and meds sorted first and just take a step at a time balancing a bit of exercise ( I mean keeping mobile not lifting weights 😂 ) with rest, and bit by bit you’ll get there. I have experienced all you are saying and get where ya coming from so please don’t despair!!! it’s about tweaking lots of things in ya life because RA changes it, but we can get back on track! even if we fall off on the way. Positive thinking, and learning to listen to my body made a huge difference to my days. Take care and chin up we all hear what your saying.😇🤗💕xx
thank you, trying to take the advice on board. I feel so foolish for no listening and ignoring the obvious signs that something was wrong. Truly tired of taking more and more medication but well.....tomorrow is infusion day and hopefully this will turn the corner.
Your last sentence really struck a chord with me. I used to feel exactly that, the longing to return to the life I once had and the belief that "then things will get back to normal".
It was a long time before I realised that this looking back over my shoulder, though a necessary buffer to prolong my denial about just how much power this wretched disease had over my quality of life, was in fact holding me back from 're-framing' and being able to move on.
It took a while to see that looking back was literally, holding me back. What I needed to do was accept that maybe I was like a snake shedding a skin, going through some sort of metamorphosis.
Without that skin, which contains all your 'old' confidence and vitality, you are now naked and new, still moving forward, making it up as you go along.
You have battle scars understandably (pain, lack of sleep, loss of faith in medication etc) but you WILL emerge from this stronger, wiser and probably not the same person you once were. Aside from everything else, you are grieving, privately, the loss of your old self and your old life.
The phoenix rising from the ashes is a nice image to hold onto.
dearest MissMinto, you know how to make a girl cry, you are so right this is grief, i miss my life so much, i thought i was over it when i retrained as a therapist and had a whole new career doing something that I loved and was so rewarding. Holding on, convincing myself I can get back there is not helping me one bit; thanks for 'eyes wide open' response, I needed to hear what I already knew and just didn't want to face or accept.
This is just another phase in the fascinating/debilitating journey that is life with RA and thankfully it too will pass. It's taken ages for me to make the connection, but whenever I took oral steroids in the past I would also plunge into a tearful, hopeless depression...thankfully they don't affect me like that if I have a jab, so that's the only way I'll take them now. Maybe they made you feel weepy?
Hopefully you will get back to working as a therapist, you're maybe just 'on a break' as Ross in Friends used to say. In its perverse way RA shows us how tough and resilient and brave we are (often when we least feel like it) and gives us a clear understanding of what it is to live with fear, loss, anger, grief etc - all marvellous qualities in a good therapist of course
been a long time, how are you? I hope everything is good with you at the moment.
It has been a long road, just beginning to get back on track. I had the infusion but picked up an infection which they didn't realise I had until after I had the second round. Since then it has been one infection after the other;however, it has been a month so far of no infections and the pain in my joints are beginning to decrease.
Working on letting go, thanks for your support. Wish you well.x
Gosh Paisley, it's relentless isn't it?! What's the plan now, are you going back on the Rituxumab infusions?
I've just switched from Humira to Benepali (or Bengali as the autocorrect insists on calling it) as my ESR has been hovering in the mid 40s for over a couple of years now. This battle is exhausting!
I read a phrase the other day that made my eyes nearly pop out of my head - I think you as a therapist will appreciate it: "Autoimmunity is a failure of self-tolerance"...much to think about.
Hope you're feeling better - better days ahead for sure, as spring/summer is just around the corner. X
thank you, hopefully the infusion I am starting tomorrow will work. MissMinto was on point and I just have to work towards accepting my new skin and quit trying to get back to a life that's no longer mine; have to create a new life now.
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