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Category Archives: Ranting

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.

Now That’s What I Call A Blaze of Glory

sad dino suitSo. For those of you who have followed me on facebook you may know that I started a small fire last Wednesday. Not in an ‘arsony-crazy-chick’ kind of way though so don’t get too worked up. So I had a candle that I’d moved to my nightstand and a box of issues was a little close. When I looked down I thought “hmmm, that’s toas– OH MY GOD FIRE”, in a fit of panic and not wanting to die I picked up the fiery ball of tissue death, ran towards my bathroom, drop the fiery ball, pick it back up, throw it towards sink, lands on mirror somehow sticking, I scraped fire monster into sink [RIP toothbrush]. At think point I’m amazed I didn’t burn down my damn house, I also realized that my right thumb had 2nd degree burns. My roommate was kind enough to drive me to walgreens because I thought I just needed some burn ointment [for the record I’m actually first aid trained], while in Walgreens my skin started to blister and hurt like crazy. My roommate took me to the ER where the nurse practitioner told me “I don’t give female patients ‘Silvadine’ [RX burn cream that EVERYONE uses] because it can discolor your delicate hands”. I told him I didn’t care and that fire also has that effect on hands. Here’s where things take a turn. They wrapped my hand and gave me something for pain. I thought it was a fairly low dose hydrocodone mix [like Vicodin] NOPE.

1 Lortab later I lost my house key and don’t remember going home. I do however remember waking up from my codeine induced coma thinking 2 things. 1) this is the most I’ve slept since Mayo PRC 2) Everything hurts and I feel like death. SO. I ditched the remaining Lortab I was given and got all eye of the tiger and soldiered on. This adventure made me realize that I really can’t have pain medication no matter the situation, at PRC they say that it’s okay if it’s an acute issue but for my own sake I can’t. On the upside I’m only 1 week out and my hand is bandage free for the first time today, the skin is still messed up but it’s not terrible.

Sincerely,

The girl on fire

Holy Petition Batman

always help someoneHey gang! Super fast! I wrote a petition for ‘We the people’ to be reviewed by the government. The petition I wrote asks that the social security administration add rheumatoid arthritis to the compassionate allowance list at the yearly hearing. I need 150 signatures for it to go public on the white house site. Any and all help is appreciated, petition in the link:

http://wh.gov/igTXY

I am very excited to go into the next semester of school. I did fairly well last semester given that it was my first time being back full-time in a bit. I’ll keep everyone up to date this semester and look forward to taking 15 hours [17 total including weekend classes]!

I’m going in!

                                                         weirdness

Alright gang by the grace of one or more celestial beings I managed to not only attend my two summer school classes but I aced both! I must say I was just as surprised as y’all are, my own family was surprised! I feel more prepared than ever to return to school full-time. This past year I had taken 6 hours of classes and worked 29 a week. I am going in at 12 hours and work 15 a week this semester and things are beginning to look much more doable than before. My grades are recovering from the past 1.5 years of extra health adventures! I owe a lot of this improvement to my friends, family, and PRC family that have helped me along allowing me to start to get my life back, mind you not as it was but as it realistically can be. Knowing that I can function without my illness being the center of my universe has helped a lot.

I will keep y’all updated on how things go as I continue on the ‘abundant adventure’ that is my life.

Gnawing frustration

bizarro 1May I start today off by saying “GRAAAAAAAHHHH…” this is directed towards my frustration at beginning to feel more fatigued than I have in a good while along with my solo pain management not going swell. Excuse this sorry excuse for a post, I’m running on empty today. I am both very nervous and excited for Mayo PRC and am very hopeful that it will be able to help me. I’m frustrated due to my inability to do a million things at once and having to pace myself even more than usual. I’ve met with my faculty advisor and am now set to graduate spring of 2017 slow and steady wins the race I suppose… My advisor looked me dead in the eyes and told me not to take more classes than I could handle. Now the Determined all-or-nothing part of me said 15 hours would be a good choice, my fabulous advisor admired my can-do attitude but informed me that if I was going full-time again I was to take 12-13 hours max. I both love and hate how easily she sees my wish to power through and my physical limitations. On the grade front I’ve somehow managed to keep straight A’s [It’s only 2 classes so it’s not a huge deal] but my GPA will get the boost it’s been desperately needing. So there’s hope that when I’m full time next fall that things will go a little better.

Here is an accurate depiction of my life via waking up. At this point every morning goes something like this:

Determined Me [DM]: You’re alarms going off get up.

*attempts sitting up*

Fibro Me[FM]: I feel like death, maybe I’ll call in..

DM: NO

FM: But really, I’m no-….

DM: NOOOOOO!!!!

FM: I might throw up or cry

DM: Do both or get moving

FM: FINE!

*gets ready for work*

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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