Tag Archives: spoonie

It's been a while since I posted. #gradSchoolSucks and all that.

I have been struggling with a lot of stuff this month.

The "on this day" feature of Facebook has made it clear that October is migraine month for me, and this month was no exception. In fact, my migraine monster decided to go for a personal record. I had three weeks straight at the end of September and beginning of October where I didn't go a single 48 hours without a migraine or other severe headache. I finally determined that sinus pressure, partially due to crazy weather changes, was playing a part, along with a bit of dehydration from the constant pain. Munchkin's first neurologist (who was a Godsend) said migraineurs cannot let themselves get hungry or thirsty or they risk a headache. Wiser words were likely never spoken. I signed my life away at Walgreen's for some real Sudafed, upped my water intake, and along with several rounds of a version of the ER Migraine Cocktail, finally got the cycle broken.

The #meToo wave crashed over Facebook, and I felt moved to share a little bit of my experience. This caused me to publicly state some things that went on in marriage #2 that I'd never spoken of publicly. That required a lot of emotional processing, and I'm currently re-evaluating people who remain in social circles with both Ex#2 and myself. I think it was worth it, as a couple of guys on my friends list posted that the #meToo wave showed them in perfect relief something they'd never realized before. That virtually every woman they know had suffered some degree of sexual harrassment, assault, or abuse in their lives. I really hope that this is the beginning of a sea change in the way we talk about violence against women.

I'd like to point out that I'm being gender specific with my terms, because the violence is also perpetrated against non-binary and trans people when they present or are percieved as female, so I have not changed my wording because I believe that this particular violence is against women specifically. Non-binary and trans people face ADDITIONAL violence because they are not conforming to societal gender norms, and this is equally wrong. I don't like conflating the issue because it dilutes the impact of the violence against women, and it also erases the idea that non-binary and trans people who present or are perceived as female get TWO kinds of violence directed at them. I also recognize that men are victims of sexual harrassment, assault, and abuse as well. They should also be believed and supported, no question. But again, I don't like conflating issues and want to see violence against male targets given its full due.

Anyway, enough social commentary for today. LOL.

Work is stressful. Grad school is stressful. I told my therapist last night that I think I've maxed myself out on stress. It's causing me to procrastinate with school stuff making this last semester that much more of a grind and adding more to the stress levels. It's causing me to become ambivalent about projects at work, which is never a recipe for my best effort and results.

In good news for the month, I'm back to my regular dose of the fibro meds, and my daily pain level is a 2-3 out of 10 which is a vast improvement from the 5-6 it was earlier in the year. My fatigue is getting better, but then I'm still recovering from the beating October delivered to me. I still hate having a fibro diagnosis because it's so non-specific and has a lot of stigma attached to it, but I have to be glad that I'm in the percentage of people for whom the meds seem to work well.

So I have basically seven more weeks of grad school to gut through, and then I'm hoping life gets a lot happier. In the meantime, I'm hanging on and pushing through. Now that the weather is starting to level out as Fall blows in, I'm hoping that November will be a lot better of a month for me.

chachaIt seems like every time I think I’m starting to make real forward progress, something sets me back.

I mentioned a few weeks ago that I was pretty sure my rheumatoid disease was not, in fact, in remission as Dr. B seemed to think.  My joint pain had been steadily escalating since spring, with some new joints joining in the fun.

However, my blood tests show zero elevation in any of the inflammatory factors, and there is zero visible swelling in my joints.  So I asked the nurse who called with the results what Dr. B thought might be causing my now 5/10 pain level.  She called me back later to let me know Dr. B thinks it’s “the fibro”.

The WHAT?

No one had ever talked to me about a fibromyalgia diagnosis.  I knew that I probably met the criteria for it, but it fully depends on self-reported information about pain and impact on daily activities.  So pretty much anyone who reports widespread pain with a  negative impact on daily activities without another diagnosis found, gets a fibro diagnosis.  It’s the bucket we all get thrown into if we keep insisting we hurt and the docs can’t find anything else.  Medically speaking, it’s a trash-can diagnosis.  It doesn’t help that frankly some people take advantage of the self-reported nature of the diagnostic criteria in order to gain sympathy, pain medication,  and even disability income.

At any rate, the nurse said the doc wanted to put me on Cymbalta and Gabapentin.  I’ve had trouble with Cymbalta in the past and told the nurse that I’d been on Savella for fatigue because of my past issues with Cymbalta.  She brightened up and said that Savella was even better, and since I’d been on it without issue, we’d just start it up again.  After I got off the phone, it occurred to me that I’d tapered off the Savella right about the time the pain started up, so it lent credence to Dr. B’s assessment.

So I’m ramping up my Savella doses again, and the pain is lessening.  So I guess that I really do have fibromyalgia, and I’m lucky in that there’s a medication that helps.  It’s a med I tolerated well, which given my history of side effects and adverse reactions, is a minor miracle.

I’m also finding that if I can drag my happy butt off the couch and go swimming or walking, I do feel better as long as the exercise is not overly strenuous.  It’s the dragging myself off the couch when I feel like hammered dog poo that’s the challenge.

I even managed to finish my first 5K with my new weight loss surgery support group.  The Mister did it with us, and my time actually puts me in the acceptable pace rates for many of the popular 5K walk/runs.  Part of me wants to start doing them periodically, but part of me doesn’t like the thought of joining huge crowds of people to walk 3.2 miles.  Once grad school is over, we’ll see what I have the time and energy for.

This forward and back pattern is discouraging but as the quote says, if you look at it right it’s a Cha-Cha.  I guess the trick is to keep finding ways to move forward, while finding the right music for the dance.

I hadn't reviewed the Pill Suite yet because I'd had issues with the bags.  I have since gotten replacements and am now THRILLED with this solution for my meds and want to share.

As most Spoonies, I have a LOT of medications/supplements I take multiple times a day.  I have struggled with the standard pill sorters, especially with travel and when I needed to take pills 3 times a day.

I happened on the little zip-lock medication bags at the pharmacy prior to one business trip, and found that it was a MUCH better solution - at least for travel - than the weekly organizers I'd been using.  I could prepare as many days as I needed, as many times a day as I needed, and put all of it in a sandwich zip-lock bag in my carryon.  It was a royal pain to load them all, though.  I first had to sort my pills into the standard weekly sorter, then close all of the lids and open each one to get the meds for that dose to put in the individual bag.  Still, better than nothing.

Then I found the Pill Suite on Grommet.  The sorter looks like a normal 7-day pill organizer, but it has a rotating lid with a funnel that lets you get just that one medication time's worth of pills without fussing with individual lids for each day.

For me, this invention alone would change the way I handled my meds.  In fact, I had already decided if the rest of the system didn't work out, it was worth it just to have this handy little dude.  I would just use these to sort and load the little zip-lock bags from the pharmacy.  I actually bought 2 so I can do a week's worth of am and pm at the same time, or 14 days of one or the other.

The selling point of the product however, is the sealer and the little recyclable bags that it uses.  This is like a tiny vacuum sealer, but without the vacuum.

The bags have a perforated edge that easily tears off in order to get the pills back out.  This makes them a one-time use product, but that's cleaner than a multi-use bag, and they are recyclable.

If you take more pills at a time than will fit in this bag, bless you.  My morning regimen currently has 7 pills including 1 horse-sized capsule, and I take a little less than 1/2 of the availble space for pills.  (You need to leave room for the sealing process at the top.)

I will note that the first set of bags I got with the system were incredibly difficult to open, to the point of aggravating the arthritis in my fingers and requiring me to pry the layers apart with a tool like a pen once open.  I contacted the manufacturer, and they said they'd had a bad manufacturing batch, and offered to send replacements.  I've had zero issues with the new bags.  They open super-easy off the roll and I've had no problems with them.

This seems like overkill, I know.  And I AM an admitted gadget freak.  This might be overkill for someone who doesn't have a lot of meds, or only takes them once, maybe twice a day.  But even at just 2 medication times a day (my current), this system is flexible enough for me to set up 1 week at a time, or a month at a time based on my needs.  And if I have to start taking a mid-day dose of something in the future, again that's easy to do.

Caretakers may find this better as well, as the bags can be labeled in any way needed, and as many medication times/days as needed can be prepared in advance.  Morning med packs can be stored in a different place than evening med packs if that's more appropriate.

Travellers will find this immensely helpful.  Of course, check with laws/regulations about needing original labels or other documentation.  (I have my pharmacy app on my phone that documents my presciptions and has pictures of the pills for reference, and I always leave controlled medications in their original package.)

Information and ordering are available at Pill Suite and I have also seen the system and refills available on Amazon and it was originally sold on Grommet.

And just so you know - I have received no money or other stuff of value from anyone for my review here.  I bought the system full price, and no one asked me to post this review.

One of the symptoms common to many chronic illnesses is "brain fog".  It's a nebulous thing that doesn't sound like much until you're dealing with it.  Once you have dealt with it, you realize how debilitating it is, all on its own.  Trying to describe it to someone else is probably futile, but here goes.  Imagine being incredibly hung over, and being woken up out of the dead sleep of the hung over by a blaring alarm.  If you can imagine (or remember) that feeling of complete disorientation when your brain is refusing to make connections with what's around you and you can't remember where you are, or what's happening and you can't figure it out because neurons seem to be mis-firing... well, that's about it.  Except it doesn't clear up once you wake up, shower, and get some coffee in you.  Or it only partially clears and like the fog that hangs over a swamp, clumps together and drifts in and out throughout the day.  Yep, loads of fun.

It occurred to me to check my blog today, and I was shocked to see that it has been two months since I've posted anything.  Surely not!  But of course, yes it has.  It doesn't seem like it's been that long from my perspective.  But I've been slogging through the days with worsening fatigue and brain fog and hadn't realized how bad it had gotten.  I mean, I *knew*, but I didn't really *realize*.

True to my nature, I realized things were sliding the wrong direction, and I researched the hell out of everything.  I determined that I had all the symptoms of low thyroid, and had requested labs drawn by my doctor.  I've had increased frequency and severity of my migraines since mid-December, and have essentially quit trying to work out or do anything beyond what I've had to in order to get through life.  This 6-week session in school has been a disaster by my standards, as I'm currently pulling a high "C", and while I'm still effective at work it's been an uphill challenge for me and I don't feel I've been as good as I should.

My labs showed my thyroid factors to mostly be in the low end of normal, and my doctor sent me for a sonogram.  Which showed a number of very small nodules which are not concerning for cancer or anything (thank goodness) but my research turned up a link to a medication I've been on for a couple of years now for my rheumatoid disease.  Dr. B had indicated she wanted to try taking me off of it at our last visit to see if I was in remission due to my lack of swollen joints and good labs, but I'd been resistant to that.  Now that it seems to be implicated in continuing joint pain, fatigue, and brain fog I guess it's not a bad idea.  I stopped taking it last week, and I believe my fatigue and brain fog are starting to lift.

Of course, chronic illness is teaching me (the hard way) not to trust it when I start feeling good.  I view it with total suspicion.  Is it a trap or a trick?  Is it luring me into trying to do too much today so I'll be flat on my back feeling like a truck ran me over tomorrow?  Or is it for real, but removing the only thing inhibiting my rheumatoid disease going to grant me a few days of blissful normality before the spikes grow back in the arches of my feet and my hands start feeling the vices closing in again?

Hope and trust is what chronic illness robs you of.  Today's post should be one of hope and achievement that I've located what was causing my problem (most likely) and that I'll start feeling better again.  That I'll be able to re-join activities that I've been wanting to, and my quality of life will get better.  Instead my attempt at realism likely reads as hopelessly pessimistic.  I really am not a pessimist.  I believe that I'll navigate this chronic illness and find a balance for my life that works for me.  I just have quit believing that I'll ever see what I used to think of as "normal" again.  Which is a little sad, and that's OK.  I'm one who believes that if you constantly expect the world to give you roses, and it doesn't, the disappointment crushes you.  But if you prepare for it to slap you in the face and every once in a while you get roses, then you're delighted.  Maybe there's a middle ground I've yet to find.  We'll see.

Winter is a hard time to be a Spoonie.  Well, it is for me, anyway.  Here in Texas, the weather is mostly mild, but weather fronts come through every few days and the temperature variances are crazy.  Yesterday it was in the high 70s, this morning it was in the low 30s and we'll have a high in the high 50s and by Friday it'll be in the 80s.  Even on medication, my joints don't know what to make of this insanity.  I woke up this morning incredibly fatigued even though I slept well most of the night, and all of my joints aching furiously.  Luckily, it's a work from home day for me, so I can wrap up in a blanket and turn the space heater on.

I'm still adjusting to the idea that I have a chronic condition and that my life will never be like it was before.  My brain stubbornly resists even thinking the word 'disability' even though I've technically had one most of my life, and now I have two.  Migraines run in my family and we all just live with it the best we can.  It's only after learning about my rheumatoid disease and researching about it that I've realized that it's really my second chronic condition, and yes, disability.  I don't know why I'm finding it painful and shaming to use that word.  It feels overly dramatic, and somehow minimizing of people with more profound disabilities.  I mean, after all, I can still get around, take care of myself, and hold down a job.  Where do I get off calling myself disabled?

Just typing that out, I find that I really, intensely hate the term 'disabled'.  I'm not disabled, dammit.  I have a condition, and one that imposes some disability, but I'm not disabled.  The distinction seems to be an argument about being politically correct, but I'm learning that it feels completely different to say I'm disabled versus I have a disability.  I don't think there should be a law about it or anything, but I think people who are impacted by something have the right to speak out about it and ask for consideration in the way people refer to it.

So yes, life looks different as a Spoonie.  I have to ask for accommodations at work.  Nothing huge, since I already have the ability to work from home, but I need to be able to use that as needed instead of on a regular schedule.  I have to prioritize things in my life, and some things just don't make the cut.  I can't burn the candle at both ends and then catch up on sleep a week or two later like I did when I was younger.  Something has to give.  Right now the top priorities are family, work, and school.  If I don't have the energy, cleaning and cooking don't make the cut.  I don't bounce back from illness and injury the way I used to, so I have to take an extra day or two when I've been sick.  I'm really having to learn to take better care of myself, because allowing one condition to flare up inevitably causes the other to as well.  The cascade of pain and illness costs are huge when that happens.

I've read articles by Spoonies who say their illness is a blessing.  I can't go that far.  What I can say is that there are beneficial lessons that can come from hardship.  Learning to let go of things that aren't as important as others and taking better care of myself are good things.  I won't ever be grateful that I developed rheumatoid disease, or migraines for that matter.  But I will figure out how to live the best life I can with them.

spoonie_explanation Christine Miserandino penned a story about how she shared with a friend what living with Lupus was like.  (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)  This metaphor gives language to the struggles people who live with chronic illness face, and a community of "spoonies" has arisen.  I joined the ranks of spoonies last year, and everything about my life has changed.

2014 was an intense year for me.  I'd spent a year as a nurse in the ICU at a long term acute care facility, and was thrilled to move on to my "dream job" as an ER nurse at a Level 1 Trauma Center.  I struggled with the intense patient load and unrelenting pace in that ER, and felt like I never really recovered from my working shifts.  I chalked it up to being in my 40's, out of shape, and unused to the pace.  When I felt something pop in the arches of both feet while pushing a particularly heavy patient up a ramp, I thought the pain would go away with some ibuprofen, ice, rest, and stretching.  I'd had plantar fasciitis before, but this time it didn't go away, and hard knots developed in my foot arches.  The doctor at the employee clinic insisted it was not an acute injury, but rather ongoing "wear and tear" fasciitis.  Little did I know it was a sign of something much more serious.

Between the pain in my feet and the unrelenting fatigue, I knew that I couldn't keep working at the pace needed by the ER I was in.  As hard as it was, I knew I needed to find a different environment.  I loved the people I worked with, loved the challenge, and really had a passion for the work.  I also knew if I continued, I would end up missing a lot of work, and putting more strain on my team through my absence and decreased performance.  I moved to an ER in my hometown, and it seemed perfect.  The pace was still brisk, but not as insane as the county ER, and I physically felt better for a while.  I loved working there, but my physical condition kept worsening.  A conversation with another nurse about kidney function being impacted by overuse of ibuprofen made me look hard at how much I was taking every week.  At 800 mg per dose for many doses per week, I realized I was taking almost 10,000 mg a week and had been for the better part of a year.  I decided my physician and I needed to start investigating what was going on.  (Luckily my kidneys were still working fine.)

My response to a round of steroids was the tip-off for me.  I knew my feet were hurting badly, what I hadn't realized was that many of my other joints had been developing an ever-increasing level of chronic pain.  A round of steroids brought my pain levels to near zero, all over my body.  Prior to that, I would have said my ongoing pain level, out of 10, was about 3.  What I realized once I didn't hurt anymore was that I'd been living at a 6 or better.  Many people feel like crap when they take steroids, but I felt human again for the first time in years.  My migraines completely went away, I had energy again, and my joint pain was almost completely gone.  My nursing reference books all pointed me toward an inflammatory process.  As auto-immune disorders run in my father's side of the family, it wasn't a far stretch to start suspecting rheumatoid arthritis (RA).  It took a bunch of blood tests and referral to a specialist (Dr. B) and many months, but it was confirmed as non-serologic RA in May of 2015.  Recently the diagnosis was changed to psoriatic arthritis (PsA) based on new information  Dr. B had after Munchkin started seeing her.  The treatment doesn't change significantly, as it's still an auto-immune arthritis.

I'll write more about the treatment of auto-immune disorders in future posts.  What became obvious to me is that bedside nursing was not going to be a viable option for me ongoing.  I couldn't stay on steroids because of the numerous side effects that make steroids problematic.  (There's a reason one RA blogger calls them "Satan's little tic-tacs".)  I couldn't leave the RA untreated, because the pain was becoming unbearable and I would start having degeneration in many joints.  But the treatment lowers my resistance to infection, and an ER is not a place to be working when I will pick up every cold, flu, and other communicable disease I come into contact with.  So I changed my career plan and moved to a job working in healthcare with computer systems.

It's been hard to change everything in my life, and many days I resent my illness for making it necessary.  But I realize how lucky I am that I have a mix of skills that is in demand and allows me to continue providing for my family and is not as physically demanding.  I'm still struggling with fatigue and pain, but I know I'm so much better off than many people.  I don't want to be defined by my illness, but it certainly is shaping my life at this point.  So for now, it's one spoon at a time and living life the best I can.