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Tag Archives: breakthrough pain

Something Wicked This Way comes

courageWeird news everyone, in the last month I have had the pleasure of not 1 but 2 steroid packs! Until recently my medication cocktail has kept my RA/RD under control to where it wasn’t a constant issue, this may no longer be the case. My rheumatologist and I tend to use steroids rarely on me as I am overly sensitive to them and get mean, nauseous, and hungry very quickly [not fun]. The fact that she has just started throwing steroids at me concerns me, what worries me more though is that my joints are beginning to feel as though they are being ripped apart again. For those of you unfamiliar with this sensation imagine that there are weights you can’t drop that are pulling your shoulders and hips in ways they do not want to go, but all over, all the time. This could in part be due to my insanely heavy workload at school and the intense stress that comes with that. I’m meeting with my rheumatologist in a month to discuss our options. I have already missed more class than I had hope to for the entire semester, it’s not a ton but it’s more than I am comfortable with. What concerns me more is I am not controlling my pain as well as Mayo Clinic PRC taught me to. There is unfortunately a little seed in the back of my mind that toys with the idea of taking pain medication just until I graduate. Fear not, I have not forgotten how groggy and mean I was while on Tramadol and Vicodin. Nor have I forgotten the lovely sensation of withdrawal, not something I would recommend. Hopefully my rheumatologist and I will be able to alter my treatment plan and possibly switch me from my current biologic agent [Orencia IV] to another biologic. At this point in my treatment we have tried the biologics Humira, Remicade, and Orencia. Orencia has by far been the most successful in terms of effectiveness and minimal side effects. I will post an update on this issue once I have met with my rheumatologist.

REQUESTED BELSOMRA UPDATE:

I have now been on Belsomra for several months with no side effects whatsoever, we did have to increase my dose from 10mg to 15mg. All in all it has been highly useful, I continue to recommend it to people who suffer from insomnia. The only thing I have to report is YOU MUST allow yourself 7-8 hours after taking your medication before attempting to function, it makes me super groggy whenever I cut the cycle short. Other than that it’s been smooth sailing, for any further questions feel free to ask me in the comments or on the RA Supergirl facebook page.

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Hand Adventures and Wedding Jitters

fkphPSrSo first of all I would like to apologize for the lack of posts lately. My wonderful fiance and I will be getting married August 1st, 2015 and things have been crazy. Now when planning a wedding for not one but two people with chronic conditions it can feel like a huge game of chance. Luckily I have had a lot of help from both our mothers and an amazing MOH who has helped plan for everything imaginable. I’m looking forward to a nice relaxing honeymoon and some time with my new husband.

Hands, they matter. You would think this would go without saying however in the last two months my hands have been the biggest party poopers ever. Not only are all my fingers almost entirely numb but I keep dropping things due to the fact that I can’t feel how much pressure I’m applying when gripping something. So yesterday I went to see my neurologist for my botox injections and while getting them told her what was going on. At first she was a little vague saying it could be a lot of things and not to worry. She had a knowing look on her face that gave me the impression that she had a more specific idea of what could be causing this. After a bit of prodding she told me she thinks it could be a few things, the most likely being neuropathy due to rheumatoid arthritis. She explained that most RA patients eventually develop peripheral neuropathy due to the inflammation of the vessels in the hands and feet. She didn’t want to put me through a neuropathy test 10 days before the wedding so I will be going back in a month for some extensive testing. She did say that if I am just now developing neuropathy it could be a sign that my RA is less well controlled than we previously thought. Between that and the issues with my foot [also tied to RA] signs point to me possibly no longer being in remission. That being said just over a week ago I saw my rheumatologist who told me that my hand numbness wasn’t her department. She did however strongly agree with my upcoming foot operation but warned that it would not be an easy recovery. I will post updates as information rolls in.

Mega-Flares

unless its a trexIt’s a concerning feeling, knowing that  the ships going to go down and not being able to stop it in any way. Occasionally I will have what I refer to as a “mega-flare”. It brews like a storm starting a couple days out. I try to rest, sleep, eat well, exercise, whatever it is that I think will stave it off. Sometimes that works and all is well in the world, however when it doesn’t… my god. Now when I say mega-flare I am talking about both my rheumatoid disease and fibromyalgia flaring up with the occasional bonus of migraines. Well folks, I am on the verge of such a flare now. Symptoms of the elusive mega-flare involve: swelling [Joints, soft tissue, everything], pain, joint cracking, nausea, migraines, fever, exhaustion [not just fatigue], fever, inability to sleep, irritability, digestive weirdness, stress, anxiety, muscle spasms, and a profound sense of dread.

Now I am not posting this to complain or seek pity I’m posting this as someone who is on the downhill slide but found something to slow her slide. Folks, while I feel like this is the end of the world my amazing PRC friends have helped me keep my head above water with check ins and encouragement. My support system [PRC, friends, family, love of my life, etc…] plays a huge role in my survival of this. In the past I tended to close myself away when mega-flares were on the horizon as I didn’t want to worry those around me but time and experience have taught me that I need my people. It is with this newfound power and support that I choose to continue.

To anyone who feels like their head is barely above water, it’s okay. Seek support from those around you, should that not be enough find others like yourself. I promise you it will help you weather this storm.

Breakthrough Pain and Kittens

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Breakthrough Pain is probably my least favorite thing ever and let me tell you why. Besides the obvious suckage of being in pain it sneaks up on you. You can be going about your day thinking everything is going to be great and then BOOM down for the count. Today was one of those breakthrough days [my apologies if this post is a little wonky we are playing the staying awake on Vicodin game today]. Now I’ve said before that this blog exists so that relatives and friends of chronically ill patients have some idea what’s going on with their loved ones. Keeping this in mind I’m going to say that while you may be trying to help your friend/relative by pushing them and telling them they can do it, honestly sometimes we can’t and that makes us feel lazy and like we aren’t worth your time. There are days that we can be super hero’s and blast through our pain but there will still be days like today when all you can do is take your pain medicine, curl up in a ball, and pray it goes away. With any luck this will be a little better by tomorrow, if it’s not I will be calling my rheumatologist and seeing if I need to be taking prednisone [EWWWW] again and what else needs to happen, or even if there is anything that can be done right now.

On a happier note I will be seeing my psychiatrist in 2 days and am finally going to talk to her about an emotional support animal. Being stuck in bed on flare days can be very depressing and cause anxiety and I have heard many chronic illness patients talk about how having an animal with them really helps them cope and not feel like they are cut off from the world. With any luck the most wonderful Dr. Collins will see it my way and I will be able to get a cat next fall. I need her consent for this as the apartment I will be living in only allows animals under special circumstances [like my situation]. The plan is to get an young orange tabby and name him Tesla and training him to be a support animal myself [surprisingly not that hard to do from what I’ve been told].

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