The past couple weeks have been very difficult. Not so much in the RA pain kind of way but rather in the psychological way of adapting to certain changes and limitations.
After my race a couple weeks back, I was in terrible pain. The RA was acting out and I even went back on the prednisone to help alleviate though it did not help much. I saw my rheumatologist and voiced my concerns about the humira injections not working and my pain increasing, he then told me what I already knew but didn’t want to accept, that I need to step back from training for a bit to let my body heal and allow more time for the injections to start working. He said in the best case, the injections can start after the 3-5th time.
I had been essentially trying to train as though I was never diagnosed. I would cut my sessions short and listen to my body but it was apparently not enough because I was still pushing myself really hard.
So about 2 weeks ago I had to accept that I should relax on the training and focus on taking care of myself. I figured that I would take it day by day and see how I felt, so that way I didn’t rule out training completely but rather on an as-feel basis.
Last week, I went in to have my nuclear medicine full body bone scan and MRI’s done. The day after I did my nuc med scan, I get a call from my Dr.s assistant first thing in the morning telling me that something came up on my bone scan in my left foot and my Dr. absolutely does not want me training. I made a follow-up apt for the 28th to discuss what’s going on.
So, I have wanted to write but I have been dealing with all this news and trying to cope with the onset of depression that it brought on.
The hardest to deal with are the limitations and the depression. It has recently become a daunting task to talk to a lot of my friends because the topic of conversation usually resolve around triathlon, or training or something to that effect and I find myself feeling left out and jealous. I’m typically not a jealous person but with the recent course of events, I feel like a bird that had it’s wings clipped and I have to watch from the ground while all my friends are flying around. It’s shitty.
I find myself becoming an introvert just hoping the days will go by as fast as they can and I can get back to being myself.
So, when I sit here and write this, I can’t pretend to be happy-go-lucky because I am sad, discouraged, and just trying to find my strength. I feel like I’m taking hit after hit and now it is starting to affect me mentally. My enthusiasm is fading and I am just hoping that with every next appointment, I will get good news, or I will start to feel better, or some miracle will happen.
I’m not sitting here feeling sorry for myself, I’m just trying to accept and adjust to my new limitations and needs, and for anyone that has gone through some medical adversity or daunting diagnosis, you know it’s not sunshine and rainbows.
My next apt is on the 28th, hopefully we can make a game plan to get me back on track.
I want my life back.
Well written my dear little(strong)friend…all my love honey<3micki obrien
Hi, My daughter, Cambria, is 10 1/2 with Juvenile RA. It is in ALL of her joints and she takes many meds daily/weekly. She was diagnosed right before her 9th birthday when she lost 20lb in a month and could no longer walk. She loves to play softball and has always been stellar-until RA. Last week she asked me to take her to a travel softball tryout. Ankles went after 1/2 hr, but she kept going through tears and finished the 3 hr tryout. She cried on the way home about how she CAN do it, but the arthritis won’t let her. I told her we would get her meds adjusted again so she can be the best she can be. Her response was, “I just want to be 10 and I want to be able to play like 10 year olds play” Just breaks my heart. She did make the team because she hit the heck outta the ball batting, but I am so worried about flares and the pain. Kinda just want to tell her to swim, swim, swim, but she isn’t there yet to give up on softball. I can feel the same struggle in your post I see in her. At times, she is can be so paralysed by the fear of “what if”. What if it starts to hurt because you can be fine one minute then in pain the next. What if my shoes become untied & I can’t tie them? What if the medicine kills me? What if I can’t hold my pencil? Her favorite saying she says to cut the anxiety and push through is, “It doesn’t have to be perfect, but I’m going to try,” Sometimes, I think, the effort you give and the joy you receive from doing something you love to do is more important than the result.
It is tough all right. I really resented having to adjust my life for my arthritis … but bit by bit I have clawed some of it back and hopefully with a change of meds .. I’ll get a bit more . Look after your self and don’t be too hard on your self either arthritis is a big deal … I can’t believe all you’ve done so far !!.
Hi Anglea,
I hope your appointment went well. Accepting our limitations with RA is very difficult. I have also watched people do things that I can’t do anymore and feel so depressed. Sometimes it is something so simple, like squatting, that I can’t do because of my bad knees.
I have had RA for about 11 years and I hate relying on medications, but if it were not for methotrexate I would be a mess. My whole body would hurt, my knee would be the size of a grapefruit and my shoulder pain would be unbearable. I am not the athlete you are, but I do enjoy walking and exercises that are not to hard on my joints, and I feel that it helps me a lot as well. I really need to improve my diet too!
Don’t give up. Sometimes it takes a while to find the right combinations of meds, exercise and diet to give the best results. I worry about long term affects of my meds, but I know my quality of life right now is so much better by taking them.
You sound like a very determined girl so hang in there! I wish you the very best.
Lori
YOU are the sunshine Angela! Keep being the type of introvert that reaches our to her friends, supporters and loved ones!
i think you mean extrovert Bruce…