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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all i want for christmas is a set of functioning bowels (IBD awareness week 2013)

not to much to ask, right?? i know.. i know i should be grateful for the bowels i still do have, but for how often they hardly work (or is it working too hard??) i would appreciate a fresh set of them.

today i was supposed to have my follow-up to see how my levels are doing since being off Humira. so far the only physical things ive noticed as far as withdrawal from the injection are muscle aches and very sore joints; i can unfortunately tell with how much pain i have been in lately (not localized to one area). its been a long week at work & stress is trying to sneak its way in to my body. i think ive done a pretty good job of finding ways to eliminate most of my stress in healthy ways. i think most of the biological withdrawal will be evident in the next few months to come as far as increased stomach pains & more frequent trips to the bathroom, but for now, i want need to remain off biologics & enjoy the time im able to have without them in my system. ive only been off of them for a little over a month. even in just this short period of time my immune system is better, the psoriasis caused by the injection is lessening (but still evident), i have had no flu-like symptoms and my overall spirit has been lifted since i dont feel weighed down by an injection every other week.

ive been researching the two types of chemotherapy my GI would like to try out.  6mp & Methotrexate – both very risky drugs. Humira turned out to be a scary drug for me, but did not know this when i first started. unknown risks of long-term side effects.. obviously, anytime you start a new medication, there are risks, but these arent your typical run-of-the-mill side effects. these medications used to treat IBD are scary. these 2 specific therapies are used to treat different types of cancer including leukemia – thus proving how potent they can be.  its first side effect listed is obviously well-known, vomiting. next comes nausea, hair loss, easy bruising/bleeding (which is a huge concern in IBD patients; which is why blood tests are so frequent from possible worsened anemia), dizziness/fainting & joint pain/swelling. long term side effects include liver & lung damage.  i even read that one of these drugs is/was used for abortions in the past (!). there are many things to consider when choosing these drugs and which will prove to have more of a positive effect on ones body than worsening one’s health. how will these drugs impact my life? as much as i dont feel well since my colonoscopy, at what length do we have to go to achieve maintenance for my symptoms?

so why chemotherapy? for many patients that need to remain on steroids in order to stay out of a terrible cyclic flare, or have a severe flare after stopping the use of steroids, Methotrexate & Mercaptopurine are a way to achieve the same results without chronic steroid use. since i fall into the category of chronic steroid use and my body has seen an extent of long-term damage from them, its time to try it. i guess ill have the next week to continue my research and try to remain neutral regarding what i find. most of the articles that pop up are so negative, so im thankful for some of the online communities im a part of to help find the positive & put it into perspective, how these meds have been successful for them. i dont know what my future has in store for me, but im determined that i will find something that will work for me. the unknown is a really scary thing to me; im not great with change. researching and finding only negative response and feedback sucks to be honest. having a disease with no cure sucks.

here is more information on why treating IBD with chemotherapy has been effective in many patients:

http://www.med.unc.edu/gi/specialties/ibd/images/treatment-of-crohns/Methotrexate.pdf (VERY helpful website)

http://www.healthline.com/health/crohns-disease/6-mp-remicade-methotrexate