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PRC: Week 2 Recap

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rdj on changeSo this week has been an interesting one. About Wednesday I started experiencing [unanticipated] withdrawal symptoms from my Tramadol, on the upside that only lasted about two days and I was doing better by Friday. This is what led to my run. I had talked to Physical Therapy [PT] prior to the Tramadol withdrawal and asked if it was possible for my to attempt to run due to all the hip and leg exercises I had been doing, they agreed to allow me :30-1:30 minutes to run under close supervision. On Friday it was agreed that I was looking well enough to attempt to run. I warmed up and started running on the treadmill with a physical therapist and a student watching me. They stopped me 30 seconds in and corrected my stride in a way that they believed would lead to less impact on my knees. I then ran for a 1:30 AND IT WAS AWESOME! I was sore the next day but that minute 30 was so worth it. PT says I was grinning from ear to ear and even snapped a few pics of me. I was honestly so excited to move that fast again [especially after being told I’d never be able to run again due to the impact on my joints] I was almost in tears with happiness.  I’m not sure if/when I’ll be able to run again due to my pain still not being in control but I’m going to talk to PT about it. In other good news my hand function has increased through use of a “Bow and Arrow” made out of resistance bands that one of the PT’s made for me, having almost a full range of motion in my hands again feels damn near magical. Now for all of the good news so far do know that PRC is still pretty tough. Life feels a lot harder when you don’t have your pain meds to fall back on and I have a lot left to work on.

 

On another note I am looking into new hobbies as a means of distraction per PRC suggestion, I’m thinking of going the ukulele route. Be excited ya’ll!

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Swing and a Miss

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make out with meSince Rheumatologist A [the one who diagnosed RA initially] didn’t specialize in Fibro care I thought I’d try my luck with a rheumatologist [B] and see if she had any ideas on how to better manage my pain as I am still having problems. Needless to say I’ve been looking forward to this appointment since I made it. This afternoon I showed up at rheumatologist B’s office after waiting for an hour I was called back by a very nice nurse [I mentioned this because nice nurses go a LONG way in my book] anyways so she takes me back and starts going through my history with me [RA, Fibro, occipital neuralgia, surgery, TB, etc..] the doctor comes in about 5 minutes and and starts barrating me with questions. I understand her need to be informed on the situation but she was very brisk and harsh. After getting up to speed I ask what she suggests I do for my pain as it is currently not managed well. She then proceeds to tell me to back off of my Tramadol and discontinue all Vicodin use [which I agree with and have been trying to do]. I told her that I was in too much pain to function without the low dose of Tramadol every 6 hours. She then tells me that I am clearly on too much medication and need to suck it up [not in those words but very close]. I get that I need to be off pain pills but have some compassion. She did however ask why I wasn’t seeing a doctor in Oklahoma, I told her I didn’t know of any and she referred me to a clinic in OKC. I appreciate the information regarding the clinic but will not be going back to rheumatologist B. I will continue treatment with rheumatologist A until I get in contact with this clinic.

Decisions

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nanami cowdroy cranesI will make this post brief as the dose of Vicodin that I finally caved in to is kicking in about now. I have decided to attend the 3-week long Pain rehabilitation program at the Mayo in Rochester. At present it is scheduled at a time that absolutely will not work, I am hoping that they will have appointments in October as there would be a lull is schoolwork around then. While the thought of missing 3 weeks of school appalls me to my core, the reason I am part-time this year is so that I can get my health under control. A fact that my best friend and roommate pointed out. The Lyrica is helping a lot but I’m still having some intense pain, the Tramadol barely takes the edge off and I’m trying to stay off of narcotics if I can hep it. As I am trying to find a job this trip may prove problematic in that regard, but I really need to go and will find some way around it. If I have to work a terrible job I can just quit [fast food maybe?] and then get a decent job upon my return so be it. Point being I WILL MAKE THIS HAPPEN. I am going to discuss it with my family very soon.

FREEDOM

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RDJ alcohol and narcoticsToday I went to see my rheumatologist. At the beginning of the appointment I was straightforward in telling her about my trip to the Mayo and what they had told me regarding my lack of RA symptoms and the presence of Fibro symptoms. She was very attentive and listened to my whole spiel. I asked if this meant that we questioned my initial diagnosis of RA and she said no, she pulled up a chart on her computer showing my total swollen joint count over time and pointed out how many swollen joints I’d had initially and how they decreased over time as we became more agressive in our treatment. She checked my trigger points and said that they had not been this bad previously and showed me a chart of my previous positive trigger points, neither of us are sure why it is suddenly worse but we agreed that continued use of Lyrica and Tramadol was in my best interest [due to the use of Tramadol I am COMPLETELY off of the Vicodin!]. Then I asked the question I have been dreading and fretting over: “Can I stop my methotrexate?” For those just tuning in Methotrexate [or MTX for short] is a chemotherapy drug that in small doses is used to treat autoimmune diseases such as RA. It is very harsh on your body and I personally have had the unfortunate side effects of mouth ulcers and nausea. In short I would very much like not to be taking MTX injections once a week. So I asked her if I could stop this horrible drug AND SHE SAID YES! I am officially off MTX! This is kind of a big deal. I then asked about my other RA medication Orencia, she said that if my RA is still in remission [which she confirmed is what happened] in 6 months that I can discontinue Orencia! BUT she was very adamant about this disclaimer, once RA is in control getting back to remission after a major flare can be hard to come back from, so from here we proceed with caution. On a positive note I begin tapering off of the NSAID Celebrax tomorrow as they think it may be contributing to my stomach issues.

Additionally I went to the ENT that my mother is very fond of to seek out help for my oral ulcers, he was very helpful and gave me MEGA oral ulcer solution with more drugs in it than I can remember [mostly used on chemotherapy and radiation patients] and some oralgel paste. They are already getting better!

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