polar vortex flaring

days like today remind me why i treasure my good days, my great days.64917faabd5fe5a7059db2f1b0f2057a

i had a rough night last night & havent been feeling my greatest lately (scumbag lungs, fissure). im in a flare right now & its definitely affecting the rest of my body. ive been trying my best to do low impact exercises to keep up with my training plan, but even that seems to be too much lately.

i told a friend last night, most days, my positive attitude wins over my IBD, but there are some days you have to let it physically and emotionally defeat you, or youll never win your battle against it. i cried. i cried a lot last night and today. humility brings us back to a level where we know we can try to control our emotions/attitude as best we can, but we come to a point where we have to accept we cannot always control our bodies. and that is hard. i hate calling into work, but i know that i would be unable to physically do any job today. if can manage to get from point A on the couch today to point B being the bathroom, id be lucky. quite a shitty situation when you get the urge.

my fibro has been flaring badly the past week. my hands (thumbs & joints specifically) have been difficult to move lately. id chalk it up to cold weather, but its lasted too long & flaring doesnt help. ive been lucky enough to be blessed with a family doctor that knows me well & responds very quickly to my requests. the route wed had originally tried cost well over $200 with insurance, so we settled on a different med for the past few months, but it hasnt been working. today, he phoned in a topical pain solution and we tried the other drug again. $256 with insurance. tears, again.

im such its the lack of sleep, energy & exercise ive had this week, but im bummed/exhausted/fed up with my body. comically, im always the first one to say “oh, rub some dirt on it. youll be fine !” but to hell with the dirt today, ill cry instead. the dirt will be there tomorrow.

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was all this for nothing?

20131216-204808.jpggaining trust with me is hard. gaining trust with me & sticking your phalanges up in my icky part business is a whole nother level of trust.

though i knew it may be coming, we were told today our work would be changing insurances…. (i suppose this is good news, being that last week, we were told it may not be offered at all). what does this mean for me? starting over.  i find myself starting to cry writing this. after all of the scopes & scans and more xrays tomorrow & lab work and GI visits ive had over the past three months (GI appt every 3 weeks). tonight, i cannot help but think… was this all for nothing?

i started back up at Aurora hospital 3 months ago after changing from doctor(s) in milwaukee the past 5 years. Aurora will always be the place i call home. the place that saved my life & the place that gave me a second chance to live my life for the better.. it gave meaning and purpose to my life.

im terrified to change hospitals. lets be honest…. im terrible with change. i put off establishing a GI in milwaukee until i had to be hospitalized for a week. i had bad experience with many doctors at several different well-known medical facilities down there, even more the reason i hate this change.

not only do i lose my GI/go-to hospital, i also lose my primary care physician, whom i trust very much. i may still be able to go to him, but will be paying out of pocket. but who the $*#$ can afford out of pocket when you have so much medical debt already? him though, he is a GEM. for him, i would make this exception.   [i have never had insurance that hasnt allowed me to go to these doctors….]

most troubling is that my prescription benefits are changing. to a crohns patient, this can most important. im not even sure what to say, other than im terrified, ridden with anxiety & feel a little hopeless today knowing that my prescription regimen is going to change soon. im sure ill wind up back on a bi-weekly biologic that is more expensive than a down-payment on a car.

bringing me to the title of this…. was the last 3 months all for nothing? ive been seeing my current GI pretty consistently for the past 3 months about every 3 weeks. my next appointment with him was scheduled to be Jan 2…. my primary care physician on Jan 9.  now, usually i have no problem rescheduling later down the road, but i need to be seen by both of these doctors. so, that means i need to establish a new GI & fast. aint nobody got time fo dat!

last year, trying to find an assistance program that would let me pay a minimal amount for my Humira required taking off work for two days to find someone that would be able to help me afford the injection. it took more than 30 (THIRTY) calls to med companies before i finally had some type of solution.  i feel like im starting over. im mentally upset, physically not feeling well and having to fast for 24+ hours for xrays tomorrow has NOT helped either. knowing that tomorrow may be the last time im at Aurora (for at least 1 year) makes me really sad. im hopeful that this new chapter has good results, but i am ridden with anxiety.

i read this verse tonight & will say it over and over the next few weeks: “have I not commanded you? be strong & courageous. do not be afraid, do not be discouraged, for the Lord your God will be with you wherever you go” – Joshua 1:9

out of every challenge comes strength, right?