Flipped On Its Head

It’s happened so many times in the last 10 years that I wonder why I’m still shocked/surprised when it happens yet again…

Life gets flipped on its head by medical problems.

I may have a few months, even just a few weeks, where I am physically able to reach those happy “new normals” of increased function, sometimes despite incredible pain.  If you’ve followed along, you’ve read about how I have been exercising fairly hard core at the gym for 4-5 days per week, sticking to a very specific schedule from 7am-11pm, working part-time, and being as independent as possible with my home and health care.  It took God’s Grace every day to help me keep up with that schedule.  But I enjoyed it, I enjoyed being able to do that much, I enjoyed working out and working hard because it’s part of my nature, who I am.  Some days I just couldn’t do it all, I get too sick, but I was able to cut myself a little slack and move on.  It was super-duper hard, but it felt “successful” and that helped fuel me forward even when it felt like I was just living in “survival mode”.

Then you barely heard from me for a few weeks and it seemed I fell off the face of the planet. 

Truth is, I think I did.

I’ve learned just how much a bladder can hurt.  Even after the icky process of coming off the Lyrica cold turkey, my bladder issues have continued to worsen.  Two trips to the Emergency Room at two different hospitals followed; exploring the latest and greatest incontinence products on the shelves of WalMart while praying I didn’t wet my pants right there in the aisle; being a bit too open with my opinions about medical establishments in my Urologist’s office and nearly being kicked out; and begging for medication to reduce the pain without causing my GI system to flare into a rage that can rival the pain of RSD/CRPS any day. 

At this point we still have no clear answers as to what is wrong with my bladder.  In fact, dip stick UTI tests come out positive but the lab tests for specific bacterial strains (which also help determine which antibiotic(s) should be used) have all come back negative…so whether or not I truly have a UTI isn’t even sure after months of back-and-forth.  I’ve more or less been in bed for about two weeks, I’m getting quite weak and have lost a significant amount of the strength I’d gained by working out at the gym, and the CRPS/RSD pain in my legs is worse because I’m not walking or moving enough – bedrest is almost the worst thing for a person who has CRPS/RSD – and because I’m no longer taking the Lyrica which was definitely helping with the burning pains and the pain that feels like screwdrivers being screwed into my toes.  I’ve missed four days of work (and income) thus far and it’s putting my job of three plus years in jeopardy because I don’t have “sick time” despite the fact that I’m sick. 

This wasn’t a turn of events that I had in mind, not a “new normal” for which I was striving.  I honestly felt like the “survival mode” I was already living was challenging enough.  So what do I call this?  “Survivor, Season 2″…if that’s the case, “Survivor, Season 18” is probably more like it?  Sigh.  I’m trying to accept it well, not to be angry, just to take each moment as it comes.

It requires equal if not more of God’s grace operating through my body, mind, and heart to keep my ship afloat now.  It also requires the help of many people in my church because I’m quite unable to do many things for myself at this point.  I cannot drive, I cannot cook, I cannot manage my own medications independently, I cannot clean my house, I cannot go outside or even leave my house without intense CRPS pain due to temperatures, I cannot go to church, I cannot get the groceries.  I like my independence.  I became an Occupational Therapy Assistant a few years ago to do just that – help people with disabilities become as independent as possible…and so it seems to me such the perfect thorn in my side that this very passion of mine appears difficult, if not impossible, to attain consistently within my own life. 

Yet by golly gosh, if I’d not fought similar fights in years before, I’d probably be falling apart at the seams by now.  Instead, I just recognize with a few extra sighs that yeah, this is going to be one heck of a long exhausting uphill battle for me this year.  I may make some ground, lose it all over again, perhaps exceed the abilities I had in 2012, then develop some “new” disease I’d not had before.  It’s just the way this goes.  If nothing else, I can depend upon this consistency – my health is anything but consistent. 

Yes, I do recognize I sound negative, but I guess that’s the honest truth about what goes on in the life of a person – me – who is 29 and faced with some very challenging challenges and disabilities.  It’s not all peaches and cream…life is just hard sometimes.  I lost my innocence in believing otherwise a long time ago.

So, with the current state of affairs, I’ve had to make changes to my plans.

I am still pushing forward for the SCS trial (and psych screening prior to), and I was really trying to focus on building up my strength prior to dealing with the SCS and the mobility and functional restrictions involved with that.  Now my focus has to be the bladder so that I can get that calmed down to be able to move and build my strength up again, but this time I’ll have much less time to do so before going down the SCS road.  At the same time, I know I can only push my body so hard before the pushing to get better/stronger actually backfires and lands me on bedrest.  It’s a delicate balance.  I kind of feel like an Olympic athlete who has a very careful balance to strike between training, rest, which foods to eat and how much of each, etc.  Except that…I’m so NOT an olympian.   🙂  Obviously.

I will try to work from home this week as usual, though I’m out of certain bladder meds (why a doctor can’t prescribe enough meds to get you from at least one appointment to the next is simply beyond me!!!!) which may cause my pain to increase significantly and make working tomorrow impossible.  I really don’t want to lose my job; I’ve worked so hard to keep it.  I’ve had to think even more seriously about trying to take a leave of absence due to medical issues.  If I keep pursuing the SCS, it will involve one week off of work for the SCS trial, then several weeks off of work after the implant.  So I think medical leave, at that point, would be absolutely necessary.  In the meantime, I’ve tried valiantly to put it off as long as possible. 

That’s the tip of my iceberg at the moment.  Lots more happening, lots more jumbled up inside this brain of mine, but too tired and too much pain to write, as has been the case this month.  Hopefully more later.

I just need to quit being so surprised when this “life getting flipped on its head” thing happens again…maybe if I just expect it, I won’t be disappointed when it happens.