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Battle Report

polly pocket lizards

So I met with my rheumatologist today and learned several things; my RA/RD is fully active again, I have Sjogren’s syndrome [not a surprise], joint damage in my hands and feet, and my Fibromyalgia is fully active. Obviously most of these things are less than ideal, however we have a course of action. I am a fan of practicing reckless optimism, so let us explore! I will be changing my infusions from my IV Orencia to IV Actemra. We will be taking advantage of me not being allowed to have my IV for 8 weeks due to surgery for me to transition over to my new biologic. For those who are not in the know Actemra is an IL-6 inhibitor which works with a part of the immune system no other drug currently addresses. In addition to this I have had extremely dry eyes and mouth for months and finally asked about it, I was told I had sjogren’s syndrome which my doctor had several medical solutions to help with symptoms. We decided to just take care of the imminent RA issue for now and to explore these options at a later date. At present it appears the joints in both my hands and feet are finally showing signs of irreversible deterioration however we had been aware that we were headed toward that for some time, we had just hoped we could stave it off until I was a bit older. She strongly encouraged my foot operation due to the fact that they are re-aligning the bone, shaving the bunion, and evaluating the deterioration of the joint capsule. My foot operation is scheduled for December 14th and I am to be off my feet for 4-6 weeks. I only have the option of 3-4 weeks so we will be hoping for the best. My husband, younger brother, and close friends will be helping me not lose my mind I also have adult coloring books, movies, and Fallout 4 to help distract me. Due to my history with pain medication I will be attempting to go off of it as soon as possible. They want me on Oxycodone and Percocet for almost a month, we are aiming for less than 2 weeks.

BELSOMRA UPDATE:

DO NOT ACCIDENTALLY DISCONTINUE, I did this due to a refill error on my part, this caused me to not sleep for close to a week. Prior to getting it back into my system I experienced mild withdrawal symptoms that made me a grouch. After 3 days back on my regular sleep schedule, all is well with Belsomra and my world.

Remember: Power, wisdom, courage

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PRC: Let the tapers begin

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why do we grarSo I have completed 2 OFFICIAL days of PRC programing and let me tell y’all what, it’s exhausting. I’m fairly sure that I could actually fall asleep standing up prior to us doing Tai Chi today. The program is rigorous and exhausting but so far it’s been worth it. The people I’ve met and the support they’ve offered even in the last couple of days has just been incredible. If I get nothing else out of this [which I highly doubt] the support and relationships alone will have been worth it. The physical therapy [PT] program is unlike any other that I have attended in that it addresses your body’s issues head to toe instead of focusing on one particular area. I like the idea of it by and large but also woke up feeling it in a very real way this morning so we will see what it accomplishes. Occupational therapy [OT] is interesting to attend as an adult [I went when I was very young],  So far in OT we have covered self-care and moderation and why they are critical to us leading happy, healthy lives [more on that later]. In other news today my care team and I discussed what steps we would begin to take towards reducing the medications I am currently on. It was decided to start with Tramadol as they want me off it the most and I am taking a fair amount of it. They also want to take me off of Vicodin, Tizanidine, and Amitriptyline. I begin the tapering off process tonight and the plan is to be off it completely by next week, I will report back with results as the program continues.

But Mooooom….

mermaidWhelp my friends it would appear we have reached an impasse. The Lyrica has either done all it’s going to do or something else is at work. While my pain is better and I am having more “good” and “okay” days the bad days are still pretty crummy. I mean I didn’t ask to ride the RA/Fibro train through life but it’s a bit late to get off it now isn’t it. Regardless my fatigue has increased in the last few days I’m unsure if it is (A )due to the weather shift (B)the higher dose of Lyrica is making me tired or (C) none of the above, because why should we have any idea what’s going on with your body. I’m betting (C) because it just seems likely at this point XD. I figure I’ll just play the waiting game until it is time for me to see whichever doctor I see next. I’m playing this new game in which whatever doc I see next gets ALL OF THE SYMPTOMS AND INFORMATION. It seems some tiny detail is what tends to matter and at this point I’m just gonna tell everyone everything. Possibly not the most solid plan but, eh… Additionally my migraines have returned with a vengeance I’ll be telling my orthopedist [who manages my migraines] shortly. I did speak with insurance and was a little appalled to learn that my Botox injections cost $1,500 a pop. BLERG, they made me put my card on file “in case the unforeseen occurs”, which begs the question “what the heck does that even mean?” It means if I’m ever without insurance I’m in trouble [for so many reasons]. On that note it would appear that there is a possibility of me losing that secondary insurance that has been saving my butt, more on that later.

In other news so far the straight A’s train has continued on the school front! Not really sure how but may I say, HELL YEAH.

Two doctors walk into a bar…

taxidermy for the ladiesAlrighty! So I went to both my Neurologist and the Rheumatologist yesterday and we learned a couple things. First I saw the neurologist who thinks that the pain issues are related to RA, she wanted to hear what the rheumatologist said. This is the part of the story where I tell you about the longest rheumatologist appointment I have ever had including the one when she diagnosed my RA. We sat there talking about specifically what type of pain it was what I had done for the last 48 hours leading up to it, what was going on in my life, school, work, everything. The best pain descriptor I could come up with was it felt like I was in a hamster ball full of stalactites. She believes that this was a pure Fibromyalgia flare up worse than any I’ve ever had due to the increased stress of failing my first college course, my boyfriend graduating, and the intense cold in the area I live in. She did an incredibly thorough physical and showed that NOT A SINGLE ONE of my joints was swollen granted I had had my Orencia IV two days prior. We did discuss the possibility of me having a minor RA flare as an explanation and she expressed that if we found swollen joints in the near future that she would want to change my IV to Actemra [I feel Orencia is doing a great job though]. The end result of the appointment was no medication change for the time being and both doctors urging my to go to the Mayo clinic’s ‘Pain rehabilitation center’ for the 3 week program. I will be resuming my yoga in an attempt to help with the day to day pain and we will re-assess my medications in 3 months once the cold weather is really gone. On the bright side while I’m not thrilled about not being able to fix this with medication at least I’m not on Methotrexate injections again.

Keep on walking 😉

So it has come to this…

bioticsThe last month has been a little [lot] rough RA/Fibro wise. I had to be taken to the ER twice in 3 weeks [in 2 states] the combined trips resulting in 2 Benedril, 2 Morphine, 1 Torridol, 1 Ativan, 1 steroid shot, and an allergic reaction. I find this to be an unacceptable way to live my life, being in pain to the point of throwing up is rarely a good sign. Tomorrow I will be meeting with my Rheumatologist and Neurologist to discuss options with them though there aren’t many ways this could go. The most likely option seems to be being put back on Methotrexate, which I cannot express my hatred of enough. It made me so nauseous all the time. I am so very terrified that they will put me back on this drug that I’ve had a tough time sleeping for the last couple nights. More than anything I don’t want my boyfriend to have to worry about me/ see me in bad shape. I am actually kind of hoping this is Fibromyalgia related then we can adjust that medication instead of the MTX. I will update after my appointments tomorrow.

Life As We Know It

945139_3182536500269_984301105_nRight after I got home I went to my rheumatologist for a check-up following my trip across the globe. After doing the normal check up she ran a few tests and FINALLY confirmed what the Mayo Clinic had determined in May, I am really in Remission! I am very excited to finally go into winter without active RA as I LOVE the cold but it always caused my RA to flare up. To be absolutely honest, I was and still am so grateful to be in remission but at the same time I am having a hard time adapting. I hadn’t realized how much of my time and energy was spent on being sick. To someone without a chronic condition that may seem like an odd statement but in my own personal experience I spent so much time looking up new treatments, scheduling appointments of all kinds, physical therapy, trying to save energy [spoons] anywhere I could, not going out with friends, or just downright feeling crummy. I would like to remind everyone that 3 years of my life were spent that way and while I do still have very active Fibromyalgia, it is GREATLY helped by the Lyrica. This massive change in my life actually sent me into a depressive state, luckily someone close to me realized something was off and got me to talk to them about what was going on and came to realize I was struggling with the fact that my state of being was changed. I am still working on accepting what my life is like now that I am doing better, which has been hard because this had hit me when I was 17-20 which is when many individuals truly find their identity, apparently my identity was a little tied up in being the sick girl who pushed herself too hard. Since realizing this I have actually gotten much better and am now able to really appreciate being better. To any CI patients out there who are in a similar place right now I want you to know that you are not the only one who feels this way and you do adjust. Because I am doing better now my life feels much more balanced, I am going to school, working a real job, and am able to have more healthy relationships with the people around me.

On another note my right shoulder has been painful for the last few years and it had been attributed to the RA. Since I am in remission my rheumatologist said it was a ‘mechanical issue’, she thinks it is hypermobile in a bad way or that the tendon is messed up. Either way I need to see a orthopedist about it, I have already done PT for it twice though so the referring doctor actually sent me to a surgeon. I DO NOT want shoulder surgery, the recovery time alone is enough to make me hesitant. I plan on asking if he has any suggestions other than PT, if not I guess I have to grow-up and get it taken care of as it does seem to be getting worse. I see the doctor for the consult on the 11th and really hope it goes well, the same day I see the AMAZING doctor who has been giving me botox injections for my horrible migraines [caused by occipital neuralgia, caused by fibromyalgia] for my 6 week check up. The shots have been helping me more than any other treatment tried on me in the past.

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.

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