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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.

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Boom Boom Pow

i failed my wayLadies and gentlemen we have a winner! And may I say about damn time. As soon as they upped my Lyrica dose the “Hamster ball full of stalactites and lava” that I have been dealing with daily finally lost it’s bite. That is to say there is no more burning pain [which is a MUCH bigger deal than the average bear realizes] and the stabbing went from a firm shanking to an unplesant finger poking, progress. In all seriousness though the 100mg 2x a day in combination with my Tramadol, Orencia, Tizanidine, Amitriptyline, etc… has made a huge difference and I am feeling like I can function better now. Additionally I AM BACK OFF OF VICODIN! I haven’t had progress this rapid since they put me on Lyrica in the first place, though to be fair the weather has significantly improved as well. Even if this progress is just a small step in the right direction it’s still progress. On the down side it has made me a bit drowsy but I’ve been powering through like a complete and total boss.

Mayo clinic should be contacting me in a few weeks regarding scheduling my 3 week pain treatment program. On one hand I am so very excited that there is somewhere that hasn’t given up on me and just said ‘you’re trapped, sorry about you’ [looking at you cruddy ER doc] on the other I am not looking forward to 3 weeks in a Microtel by myself, a full week was tough last time. I’m hoping that a couple people can come visit me the first 2 weekends but we shall see. On the upside I get to eat at “Mac’s” which is a fabulous restaurant right outside the Gonda building at Mayo. Let’s be honest food is usually the upside to most situations.

Let It Go

i have loved the stars too fondlyWhelp this winter just keeps on punching me down. Everytime the weather starts to improve a massive cold front comes through and knocks me on my ass. This last front was no exception BUT I did do something pretty awesome yesterday, I woke up with burning/stabbing pain [as I do] and decided I was going to do life as planned. This happened to include work, a long meeting, class, and a massive test [which I got a 92% on]. I did all of them and then crashed hard. My sympathies go out to those who are also struggling after storms Hercules and Pax brought in these aweful fronts. ANYWAYS, so I started trying to get in contact with my neurologist [my rheumatologist thinks this is all Fibro no RA this round], after multiple calls I finally got a hold of the nurse and asked if we could increase my Lyrica due to feeling like I’m “in a hamster ball of staligtites and lava” [the burning sensation is new] and “brain fog that makes alzeimers look tame”. She assured me she would call me back ASAP as she talked to the doctor and FINALLY called me back today telling me that they were going to change me from 150mg to 200mg of Lyrica and see is it makes a difference, I really hope it does. While I fel like a boss when I play life on hard mode I would rather not. My most fabulous and awesome boyfriend will be with me Saturday and will be hanging out with me should the extra 50 mg knock me on my butt.

I have been attempting meditation as a way of coping with the pain [pain pills really aren’t doing anything]. In attempting to find some suggestions online I happened accross something called a ¬†“float tank” [http://imgur.com/gallery/7rZco], it was suggested that this may help with the chronic pain situation, if not by helping the pain itself than by helping calm me. It’s a scary realization that you are literally trapped in a body that is trying to destroy itself. Knowing there isn’t a way to just walk away from the situation is enough to make anyone panic a little. On my last trip to the ER I started panicking when I realized the doctor was not going to help me and my boyfriend had to calm me down. Needless to say, I need to figure out a better way to deal with it. I am hoping to give the “float tank” a try the next time I’m in Dallas, the downside is it is roughly $85 a session… It’ll be great ya’ll ūüėÄ I will update with news on the Lyrica adventure.

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.

Breathe Easy

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sloth stripperAs some of you may remember last summer I tested positive for tuberculosis and went through a particularly nasty round of drugs [Isoniazid and Priftin]. I had¬†already¬†scheduled an appointment with my pulminologist [lung doctor] regarding my¬†alleged¬†‘reactive airway disease’ or RAD. I hade an appointment with said doctor today who assessed my lung function and checked up on my TB status. GOOD NEWS! My lung function is at 117% [not sure how that works], my X-ray was TB free and pretty awesome looking. I have been released into the wild with a rescue inhaler and told that I didn’t have to come back and that my yearly chest x-rays can be handled by my rheumatologist. My doctor was actually very surprised by the level of lung improvement he saw from my lung function test, he said that such improvement rarely happens and he can’t explain it.

 

My Lyrica and Tramadol regime has continued to help my fibromyalgia, I have however learned that if I forget a dose of Tramadol my body turns on me. I’m a bit worried abut the long run regarding my Tramadol use but for now as long as I stay on schedule I think I’ll be fine. I’m on the hunt for a rheumatologist closer to OSU that works with fibromyalgia and RA.

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!

You said how many shots?!

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Inevitable betrayal fireflyI have been being treated for ‘occipital¬†neuralgia’ by a very talented pain and back doctor, what we have been doing up until yesterday was injecting small amounts of lidocaine into my head and neck to relieve the muscle tension leading to pain and migraines. The down side of this treatment [besides the GIANT needle they use] is that I need new injections once a month. As I live 5 hours away from my doctor this has been very inconvenient. She had mentioned another option where they would inject small amounts of Botox mixed with saline into my head and neck instead as this prevented muscle spasms for 3 months. After going through hell with the insurance [I was the first patient she’s done this on in the practice she’s in], I finally, FINALLY got to get them. I showed up nice and early yesterday with my best friend for support, the doctor came in and told me she would start the injections in my forehead and work her way back. I had not anticipated that many shots and had foolishly assumed it would only be 4-6 injections like it was with the lidocaine. She then slowly injected me with the botox, the fluid itself didn’t hurt but the needle going into the muscle [they go deep] makes a terrible crunching noise and hurts. 23 shots later I was done. My friend decided to take me on a trip to the aquarium as a reward for not crying once [yes I’m slowly turning into a small child]. As of today the injection sites are a little tender but overall okay. My doctor told me that the botox wouldn’t take full effect for 2 weeks, I will update as to if they help.

 

I am back in Dallas and am in the process of attempting to find a new rheumatologist, the thing is I leave Texas in 2 weeks for school and usually any doctor who has openings that soon isn’t worth seeing. I see my original rheumatologist tomorrow and am ¬†anxious to see how she reacts to my new diagnosis. I hope she accepts in and agrees to treat me as currently my neurologist [who made it very clear that she is not a fibro specialist] is doing the best she can and has been writing me Lyrica and Tramadol. I’m overall better but there a certain points that are so bad that I feel the need to try and dig them out with a vegetable peeler [you’ll understand that someday when you have deep, shooting pain].

 

P.S. I have realized that in an ideal world I would live in a quiet room with minimal [soft] light that was roughly 64 degrees.

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