After my septic knee scare last week, the doctors confirmed that it wasn't septic but I am clearly having a big flare across my body and was carrying way too much inflammation. They've decided that the Cimzia injections are not working and have planned to start me on Rituximab infusions at the end of this month!
For now I'm on a hearty dose of steroids which has given me such relief and left me feeling amazing. I was SO low for all of January, but didn't think I could have steroids while we we're testing to see if the Cimzia was effective or not. For now, I'm just on cloud 9, full of energy, can bend all my limbs and pain is hugely decreased - so a happy Savannah!
It's funny, but I'm kind of looking forward to the infusions. I've always felt guilty about relaxing at home. I feel anxious about not cleaning the house, not doing something productive like creating something or going for a walk, not doing enough work, not researching or planning trips/events, not organising things I need for the house or buying birthday presents ahead of time, not visiting family or friends, not cooking a healthy dinner that takes time, etc. It's an endless bad mind cycle! But with the infusions, I can't go anywhere or do anything, I'm just sat on the chair hooked to the iv, so i can read my book and just CHILL. Nothing else will be expected of me.
Is this a weird way of looking at it or do others feel this way too?
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Savannahseger
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Yay, that's good news and a positive mindset! I'm on rituximab now and the first couple of months I was upset that there was no change at all, but I'm on month 3 after the first cycle now and I'm almost afraid to type it, but I think it is working. I haven't taken an NSAID in 3 weeks and my blood tests just came back looking normal. Can't wait to show the rheumy! I must agree with you about relaxing during the infusion. I usually feel that I should always be doing something and feel a tad guilty when I'm being useless, but oooh the joy of binge watching Mad Men during both of the infusions (and snacking because the steroid IV prior to the infusion left me starving) I think it taught me to relax a bit more overall. The world didnt end when I just gave myself a break. Good luck to you!! Xxx
Thank you! So glad to hear it's working for you, I have high hopes too
And glad I'm not the only one who thinks this way! It is positive actually, you're right, because instead of dreading it, it's a relaxing day. I'll remember the tips of good snacks too!
Ohmigoodness. That was so me.. A little while ago lol. As you have youth on your side! 😉
I always used to feel like I had to be making the most of every moment, planning, organising, making lists lol.. Maybe from getting RA so young, like me.. It makes you feel like you have to make the most of, well everything! ?
My 'enforced' rests are my infusions, or longer term, my ops.. I always say that, that I'm forced to rest, which is my recharge mode!
Best of luck with the infusions, they are working well for me.. Think am in my 5th Yr now, but I did need a few steroid injections along the way over the first Yr or so, as for me, it took a while to totally control me. But compared to being uncontrolled, I wasn't terrible while it kicked in, just not 100%
Glad you can relate! You just put into words exactly what it's like, I think you're right, it is because I've had it since I was young that time seems so important. And don't get me started on lists haha!
I'm looking forward to some much needed 'forced rest' Glad to hear the infusions work for you, I'm feeling hopeful!
Maybe a similar thing happened to you.. Probably ❤️..
When I first had this, it wasn't controlled, so instead of being out.. Enjoying yourself being young, I was stuck in, in pain, couldn't walk, couldn't do anything.
So when I got better.. It was like.. Right!!!.. I must be out, I must be doing something, or at the very least planning something, or it was wasted time..
Yeah that's quite similar to my journey, however I've grown up with it so I've had years of bad flares ups and years of being completely fine, and just yo-yoing between both states of being.
To be honest I've always struggled with anxiety and I think it's related to the condition. I feel like it's the anxiety that makes me feel I need to do all things at once, and that I'm never doing enough.
I'm actually about to start a hypnotherapy course next week with a private specialist, who is going to help me train my brain to not get triggered in anxious situations - she says that my body is constantly in adrenaline mode, or freeze mode. And the excess adrenaline is making me panic about what I do. But the problem is, it's fighting a body that doesn't have the energy to do hardly anything, so it's not helping haha.
Anxiety vs. fatigue is not a good combination! I imagine you can relate?
I totally get it, in fact I didn't want to mention before, in case it made you over think, but you are right there anyway. Bless you.
I had to see a counsellor, as I was getting so stressed. Stressing myself over what I had to do and my lists (not lusts as predictive text said LOL) and never wanting to be in the house, getting upset if I didn't have plans.
I only needed a couple of sessions, and she made me realise why I was that way.. And yes it all came back to being poorly and being, well trapped..for want of a better word, in those dark times when I couldn't do anything.
Am sure that will work for you. We are allowed to be quiet and relax.. Not just when enforced. Ie infusions and operations!
Ps.. Lol was just reminded by my other lovely half.. That my nickname in the early 90s was..
Jojoeverywhereyougojo
Haha.. Cos I couldn't bare to miss a single night Out.. Like EVER. even when I had to drag myself out and along the path. (until alcohol kicked in, then I was quite a bit better! 😂) xxxx
yeah you totally get it then! I'm interested to see what comes out of my therapy sessions. People don't realise how much having this illness when young affects how you grow up to see the world, and how you plan your life.
That's a great nickname haha! I don't think it's a bad way to be, at least you're always getting the most out of life!
Balance balance balance is the key I'm learning! It's my birthday soon and because my parents are separated, I have to see different family members on different days and to be honest, it just sounds exhausting! All i want to do is stay in bed with my boyfriend, watch movies, eat treats and drink some wine! xxx
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(and snacking because the steroid IV prior to the infusion left me starving) I think it taught me to relax a bit more overall. The world didnt end when I just gave myself a break. Good luck to you!! Xxx
Glad to hear the infusions work for you, I'm feeling hopeful!
xxx
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