Ramblings of 2015

Here it is… New Year’s Eve.  Getting ready for 2016.   It’s been a bumpy 2015, though I realize I still have a lot to be thankful for.  A lot has happened.  A few things are still being diagnosed.    There have been family changes.   And like always, I seem to manage… but it’s getting harder to do it on my own.   Fortunately, I believe that God has it all figured out. I don’t have to understand it all…

Last year about this time, I did a home sleep study, that showed that I stop breathing about every 3.5 minutes….so basically I don’t sleep enough for it to be useful.  I hadn’t been getting to the REM stage, so restorative sleep was kaput.  I went in to get ‘fitted’ for a CPAP (continuous positive air pressure) machine, and it has really helped.  The morning headaches have pretty much disappeared (that alone was worth the price of admission).  I dream more- weird dreams, but not bad dreams, and I’m getting to the stage of sleep where I can dream.  Add a pulmonologist/sleep specialist to the list of doctors I see- but this guy is A-OK.  The increase in the quality of my sleep has perked me up, so I want to do more.  I can’t always physically get it done, but it’s nice not to feel like I’m a total slug.

Then the summer came around, and it seemed like my body decided to take a flying leap towards deterioration.  From the head down:  scalp psoriasis got much worse (no more dark colored shirts for these shoulders), swallowing got bad, GERD got worse, back pain intensified, blood sugars got nutty again,  legs started having intense burning pain (as in being set on fire… not sunburn), right leg  atrophy got worse (muscle shrinking), legs started getting weak to the point of feeling like they would give out, blood pressure and heart rate started to do their dysautonomia/POTS thing- again, and something I’m forgetting.  Oh, yeah…. the kidney function tests got weird after my blood pressure got really low.

The psoriasis is an autoimmune thing (not to be confused with autonomic… they are very different).  I keep my head shaved for the autonomic disorder (very heat intolerant, and what is more heat retaining than a head full of hair that is about as thick as a bear rug?), but now the psoriasis ointments benefit from not having a ton of hair to muck through.  SO, I’m usually mostly bald, and flaky.  Not like normal dandruff flakes (those are there with the psoriasis as well), but like sheets of skin the size of my little fingernail peeling off.  Lovely.  And, yet that is more of an annoyance than life-altering.

The swallowing is still being evaluated.  So far, it looks like achalasia (esophageal spasms that don’t allow for food to pass into the stomach normally; feels like a golfball is stuck in my pipes).  They also found a “clinically significant lesion” at the junction of my stomach and lower esophageal sphincter (end of the esophagus), which will be further checked in a couple of weeks when I have the third endoscopy in five months, but with an ultrasound and biopsy done this time.  I don’t like the word biopsy, and don’t like that it took about a MONTH to get the biopsy scheduled. To me, that’s not OK.    In the meantime, it hurts, and food choices are more limited, or I have to pull things out of my throat with my fingers. The safe foods are  more carbohydrate ‘intense’, which hasn’t done much for my blood sugars.  SO, add a gastroenterologist, and return visits to my endocrinologist.

The reflux was also really bad, but changing some of what I eat, as well as  a hefty dose of a proton pump inhibitor (GERD medicine) has helped somewhat.   I can no longer take ibuprofen, or any meds in that category because of chronic gastritis (inflammation of the lining of my stomach), so that is a problem with pain management with other stuff.

I’ve got degenerative disc disease, so it’s not all that unexpected that lower back pain gets worse over time, and I knew I was going to have to go back to my pain doc. I needed a current MRI so he knew what was going on.  That MRI was horrible.  I’ve had a lot of MRIs, and usually it’s no big deal.  This one was for both my lower back and neck (it’s in worse shape with messed up discs and bone spurs), with and without contrast, so it took a long time.  I bailed after the “without” part of the test. I got both the neck and lower back done, but  I couldn’t take  being on my back any longer, not able to move.   Anyway, I went back to the pain doc, where I got an injection in my back (have had a lot of those; they aren’t that helpful, but it does help a little for a few hours).   The next step with that whole mess is to have a spinal cord implant thingie that blocks how my brain perceives pain.  It fixes nothing except perception.  I’m going to have a pelvic CT just to make sure something else isn’t going on before I have something implanted in my back/spine.  In the meantime, it’s pain meds (that I don’t like).  They do help, but I am very careful about making sure I don’t get too used to taking them.  I’m not concerned about addiction.  I get no ‘perks’ other than pain relief.  I use them as directed.  But physical tolerance is something that happens with several types of meds even when used as directed.  It is not the same as addiction (no psychological component ), but can cause symptoms if the meds are suddenly stopped.  So I’m careful. I don’t use them every day.   I follow the dose instructions.  I don’t mess with them.

During a routine follow up appointment with my oncologist, my lab work came back funky for my kidney functions.  My blood pressure had been low for a while, and evidently low enough to mess up blood flow through my kidneys.  After a few medication adjustments, my blood pressure came up and my BUN and creatinine went back to normal, along with my glomerular filtration rate (which had put me in the stage 3 level of chronic kidney disease).  One thing that has always spooked me about being diabetic is kidney failure.  I’m not sure I’d agree to dialysis if it involved the sort that requires dialysis three times a week no matter what the weather, for 3-5 hours at a whack.  That’s not a life in my eyes.   Just my opinion, though I’m sure if it came down to it, I’d do dialysis for  a while, and make any other decisions along the way.

My right thigh had started to shrink (atrophy) a couple of years ago, and a muscle study (EMG) that involves pins stuck into the muscle with a bit of an electrical jolt thrown in showed that I have neuropathy.   Between being diabetic and a LOT of chemotherapy that often gives people neuropathy that don’t already have it, I was like a neuropathy magnet… and it was getting worse.  During the summer, I started having sensory issues.   As in it felt like my right thigh was literally on fire.  Ignited with an accelerant type of fire, not a sunburn.  I’ve got a pretty decent pain threshold (as in joking with nurses during bone marrow biopsies), but this pain would not only wake me up at night, but briefly immobilize me while I tried to make sense of the intense fire sensation, and no fire anywhere near me.  If/when I got myself rolled over ON to the burning leg, it would start to subside.  The same area was numb to touch all the time… Back to the neurologist for another EMG.  The sensory peripheral neuropathy was now said to be progressive (I think most of them are).    Then back to my regular doctor to discuss medication options that wouldn’t mess up the rest of the pharmacy I take.  And, to have her check my muscle strength.  The right leg isn’t so good, and if I’m standing for very long, I feel like it’s going to give out…. so I now have a wheelchair for more than walking around in my apartment, or to the dumpster- which I still do to keep using my legs as much as I can.  The other leg decided to join in the burning pain and numbness, so it’s a two-fer now.   The wheelchair has been a huge help  in getting around at church (I joined a women’s Bible study this fall- the first socialization in years).  I hope to go to the mall soon.  😀 DSCN4140

With my blood pressure and heart rate starting to be weird (kind of like it was in the beginning of the whole dysautonomia business), I was getting more symptomatic.  One night on the way to my dad’s girlfriend’s house for dinner, I started feeling like I was getting a bit foggy-headed, and my heart rate was going up.  Time to head for home.  Don’t pass go. Don’t collect $200.   My internal med doc (regular doc) had already adjusted my long-acting blood pressure med a couple of times,  (paradoxically helps keep my blood pressure UP, unless something isn’t working even more weirdly) , so she sent me off to a cardiologist – more specifically, an electrophysiologist who deals with heart rhythm problems, and dysautonomia.  The good news was that my EKG in the office was OK (which was expected).  My echocardiogram (ultrasound of heart) was OK.  Not perfect, but not bad for my age…. my AGE….. arghhh, I’m getting older on top of all of this  :p .  Thankfully, she didn’t want me to hook up to one of the 3-4 week King of Hearts monitors for extended testing. Those are annoying.  I’ve done them twice.  I end up with episodic tachycardia (fast heart rate), PVCs (not good if they keep going but a couple of them aren’t that big of a deal), and ‘burns’ from the electrode adhesive.   I’ll go see her again in a couple of months as a follow-up.

Sometime during all of this, I went back to my endocrinologist after my A1C (average blood sugar over about a 3 month period) went up more than I was OK with.  I hadn’t seen her in about two years…. I’m SO tired of seeing doctors.  But she got me some new fangled insulin samples, as well as the ‘good’ short acting stuff and told me what to take.  I found out that my Medicare part D (drug plan) would cover BOTH of them at the Tier 2 copays !!  That was huge !  I actually cried with joy at being able to get the ‘good stuff’, and not have to take the “disco insulin” anymore (it was popular in the 70s) .  God bless Walmart for making disco insulin available for $25 per vial ( good insulin can be 10x that price).  But I was going to be able to get the good stuff, AND the endocrinologist got me enough samples to get me from the beginning of October THROUGH the end of the year !  😮

SO, just from medical junk going on, I’ve seen a pulmonoligst/sleep specialist, internal med doc, oncologist, cardiologist, neurologist, endocrinologist, gastroenterologist, and board certified pain management doc.   Good to have all of those folks to help.

My 100 year old grandmother died on Halloween. There was a lot of really snotty stuff that went on with the living siblings (aunt and uncle) ‘passing along’ information to those of us grandkids whose sibling parent was already deceased.  From my standpoint, there is no more family besides my six cousins (in one family).   I am in contact with my mom’s deceased brother’s kids, and that’s it.  Toxic people can be prayed for from a distance.  I will always wish them well.  I will not be part of the games by pretending that it was all OK.  I couldn’t go to the funeral (see above), and the six cousins who also have a deceased ‘sibling parent’ weren’t even seated with the rest of the family.… ’nuff said.   Who knows what my other cousins have been told about how we were left in the dust with being informed about changes in grandma’s condition (admission to hospice) AFTER they’d all had a chance to go visit grandma from various parts of the country (not all did go, but they KNEW what was going on).  And it really doesn’t matter anymore.  It will be very clear in the end when we all meet our Maker.  The aunt and uncle (living siblings of my grandma’s) have to live with themselves.  I don’t.

I’m so thankful for my dad.  He’s my earthly ‘rock’.   He’s 83 years old, and going strong.  We talk every day, and see each other at least weekly.   It’s a gift to still have him in my life.    We joke with each other all the time, which is great- but I’m also so grateful for him.

Shelby turned three years old on Christmas Eve.  She’s still a ‘puppy’ at heart, and my baby.   She had to have a toe amputated this summer- it was benign (there was a swelling and firmness to it that was suspicious)… and she’s back to running around all over the place.   She really is a wonderful companion.  She’s nuts… but that’s fine ❤ DSCN4026

Joining a women’s Bible study was great and I look forward to the new semester starting next week.  It’s been a LONG time since I’ve had much continual socialization opportunities.  I have to take my cooling vest, wheelchair, and Bible with the  specific study guides, but it is such a blessing to feel like I’m a bit of a part of something.  It’s at the church where I grew up, so there’s a sense of familiarity, and I’ve met some really nice new people.  I also ran into the mom of one of the tiny babies I looked after in the church nursery (who was my favorite in the 0-7 month nursery- she was such a bitty little thing, and so cute; I claimed her as mine for an  hour each Sunday 😉 ).  It was great to see someone from the past.

A lot has gone on… it sounds like most of it was ‘bad’, but I don’t feel that way.  I’m getting some help with making life a bit easier (wheelchair, better insulin), as well as less isolating (Bible study).  That trumps the bad stuff to the moon and back.   I’ve accepted that I need help with some things, and have a couple of friends who are willing to help. My dad is healthy and a lot of fun.   I have a great relationship with my birth mom, as well as her extended family.   I can still live in my own apartment, and have my goofy dog.  Through Facebook, I can remain in contact with family,  friends from Texas, as well as those I’ve known from before then.   No matter what is going on, I believe that God has it all under control for His good.   I don’t have to understand it, but I do find comfort in His ability to get me through whatever goes on.  I always seem to land on my feet (more or less), and I believe that my faith is what gets me through things.   God is good.

Bring it on, 2016 !  😉

 

 

It’s Been A Bad Few Months…

I’m so frustrated with the increase in limitations over the last few months, especially with my grandma not doing well (and wanting to see her).  I haven’t said a lot recently, but it’s not because things are better.  More things are falling apart.  My aunt called this morning to offer to come and get me to go see grandma (about 50 miles round-trip), and I can’t do it.  I hate this.  I really want to see her.  I had a cousin offer as well (and an uncle volunteered my aunt)- so several offers.  I feel SO badly for declining.  But it’s just not physically safe at this time.  😦

It kind of started with the reflux/GERD getting really bad.  I have had an endoscopy and barium swallow.  Those showed chronic gastritis and some esophageal spasms.  I still have two tests I need to get done (gastric emptying and pressure of esophageal spasms), but haven’t been able to because my spine/back and leg pain being too bad to get through the tests.  I had one test a few days ago (EMG) that showed peripheral sensory neuropathy, that is progressive.   What that means is that my limbs (mostly legs at this point) are subject to strange pain and sensations, or lack of sensation.  At some time, this will lead to not feeling my feet on the floor when walking.   That’s a safety issue.  I also drop a lot of stuff, and have more trouble opening jars, even when ‘unlocking’ the vacuum with an old fashioned bottle opener.  I’m sending for one of those gimp things for opening jars soon.

The pain in my legs has been a burning pain unlike anything I’ve ever felt.  Fortunately, it’s not constant, and mostly at night (which makes sleeping unpleasant, if not impossible). I wake up frequently to that ‘what IS that?’ until I can fully become aware that it’s the neuropathy pain.  Now, both feet are beginning to burn at night, though not every night.  It seems like it’s progressing fairly quickly.  My neurologist did the EMG (pins into legs with electricity run through them, to measure muscle and nerve responses; sounds bad- isn’t that big of a deal).  The MRI was horrifically painful, which normally isn’t the case.  I couldn’t finish the “with” contrast part, as the “without” contrast part took about 1.5 hours, and by the end of that, I was in tears.  I joke around during bone marrow biopsies- so I’m not a wimp. I was just in too much pain this time around.

Over the last several months, I’ve been having more trouble with my blood pressure and heart rate.  The first time I was really aware of my BP being low was at an oncology follow-up appointment when it was 80/50.  I’d been really tired- but I’m  disabled with autonomic dysfunction- I’m tired a lot anyway.  BUT, at that visit, my kidney  function was moderately impaired (at the levels it was at, it would have been considered Stage 3 out of 5, of chronic kidney disease).  Thankfully, with some additional fluids, I was able to get it to the vague acceptable range (normal levels are 90-100; the standard lab values only measure >60, or the specific numbers if <60).  I’d prefer to know the actual number no matter what they are.  Even 60 is stage 2.   But anyway, I dodged a bullet with that.

At that same oncology appointment, I noticed that my A1C had gone up, so got myself off to my endocrinologist to have my insulin adjusted.  With my 2016 Medicare part D drug plan, I will be able to get the “good” insulin, instead of the half-assed stuff I’ve been able to afford over the past 3 years.  Insulin is ridiculously expensive- yet until next year, Medicare has been more wiling to pay for dialysis, amputations, blindness, heart attacks, and strokes before making good, up-to-date insulin a realistic possibility.

My blood pressure meds, which paradoxically maintain my blood pressure (or are supposed to) have been adjusted three times since this summer.  I’ve noticed some orthostatic intolerance on several occasions, but once the meds were adjusted, things would get better for a while.  But it seems that no matter what the dose,  after a couple of weeks, I get symptomatic again.  When driving to my dad’s friend’s house for dinner one night, I started getting lightheaded; that is a bad situation in the car.  I got home OK, but it shook me up. I’m being referred to a cardiologist/electrophysiologist for ANOTHER work-up on this.   I’ve looked up the name of the guy I’m being referred to- and he’s a specialist in heart rhythm and orthostatic issues… perfect for what is (and has been) going on.

I need to see my pain doc, now that there are some answers as to what type of pain is going on.   All pain isn’t  equal.  What is going on is more neuropathic pain, as well as the pain from degenerating discs in my spine (neck to tail).  I’m not sure what is going to be done about that. I don’t like the spine injections.  They aren’t painful, but just don’t last all that long.  I’m not a big fan of being on “routine” pain meds, either (instead of just “as needed”), but I may have to suck it up and just take them.

So, there’s my internal med doc (primary doc), gastroenterologist, oncologist (just follow-up at this point), endocrinologist, neurologist, pain doc, and cardiologist (to come).  Seven doctors in about four months.  I loathe adding doctors to an already complicated mess, but at least until things stabilize, I just have to see them.  Fortunately, my pulmonologist (sleep apnea), plastic surgeon (scalp cysts), and dermatologist (psoriasis) get a break for now.

But the timing on any of this is horrible.  My grandma is dying (as in actively).  I want to see her, and don’t feel it’s safe to go 25 miles each way to see her.  It’s not because I don’t want to.  She was my best friend during those early years on disability when I knew nobody here (and had no access to Facebook or other online social connections and reconnections).  We’d talk about so many things and laugh about stuff in the past.  We’d also reminisce about my mom (who died in 2003).  She’s almost 101 years old, and has been the glue holding our family together.  All get-togethers and gatherings centered around her.   I have called her care-taker who tells her I called, and that I love her.   I know she knows that I do, but it’s still hard not to be able to go down and hold her hand one last time.

Eating Ghosts and Body Image

I haven’t been diagnosed with body dysmorphic disorder, and I don’t really think I’d qualify since I’m actually a physical mess- no imagined defects. But I don’t like my body at all right now.  I need to lose weight, and I have to admit, I have had times when the ghosts of past eating disorders start to haunt me.   It’s been three years since I stopped the chemo for leukemia that lead to weight gain. I’ve lost some of the weight, but not where I need to be to not feel so ‘inflated’.   I’d FINALLY gotten to a place where I could tolerate what I looked like, and then BOOM.  Nineteen months of heavy duty chemo to keep me alive gave me jowls and a gut that I hadn’t seen since the 90s before the last anorexia relapse.   Throw in what seems like some diabetic complications that makes food stay in my stomach for longer than normal, with horrible, very visible bloating (and often bad diarrhea when it finally starts to ‘move’), and food is becoming something that is causing some bothersome battles .

I know way too well that once anorexia or bulimia gets a foothold, it is extremely difficult to get rid of.  I’ve also been through some times with abnormal weight loss when I had undiagnosed GERD (gastroesophageal reflux disorder).  So, on one hand, I’m terrified of an eating disorder relapse, and on the other, I really, really need to lose the chemo weight.  And, the discomfort from the stomach sluggishness adds to the feeling of ‘fat’ (yeah, I know, fat isn’t a feeling).  I don’t know how to lose weight without getting into trouble (I did Nutrisystem for a while, and it is very effective, but I had some sort of reaction to something in the products).  Nobody takes me seriously, when I show up at this weight, and mention a fear of getting trapped in those cycles again.

I’m 50 friggin’ years old, and an RN (disabled, but I’ve still got my license).  I’ve never felt ‘normal’ in terms of emotional developmental stages- partly because of the eating disorders disrupting normal emotional growth (which began by the time I was seventeen, in earnest, so part of me is still stuck there- as with any addiction, emotional progress halts at the time the addiction kicks in), and also because I’ve never gone through the ‘normal’ marriage, children, love, etc. that the vast majority of 50 year old women have been through (thank you rape in 1987, and working a lot of hours, and also hours that greatly sabotaged any chances of meeting someone to have any sort of relationship with).  My brain still has that craving to have the body I had in the past (during the un-fat years), and it’s  so much more complicated than that.  I don’t really care what I look like in someone else’s eyes.  I like that I no longer have to deal with peer issues with clothing and external appearance… the battle is with how I see myself more than anything.  Since I’m rarely around anybody else, my opinion is always the ‘loudest’.

I don’t want to be scrawny.  I find that incredibly unattractive. I’ve been on the lighter end of my weight range for my body type and height… I don’t like bone protrusion, but I do remember liking to be able to feel them not too far away.   My ‘good’ weight in terms of looks, and how I feel in my own skin is actually higher than what most people would probably be OK with.  When I began my last relapse with anorexia, I was seriously fat, give or take an ounce… so when I lost %40 of my starting weight , it was a huge difference (that I couldn’t see). While I didn’t look anorexic, my mindset was entrenched in disorder.  I looked like a ‘normal’ person.   I want to be at the weight I was when I got out of treatment last time- or where I settled out at when my eating stabilized for about 11 years.

I think that’s why it’s been so hard- I’d finally been relatively accepting of my body until the chemo blow-up.  Staying alive is a good thing; I’m thankful for that.  And yet the mechanism to do that has created some really miserable feelings about this carcass I lug around.  I was extremely ill with the leukemia- six weeks on isolation in the hospital, then 50 doses of IV arsenic given while I was connected to monitors (I did get to go home afterwards, but it was about 10 weeks of daily trips to the hospital for either the arsenic, or shots to increase my white blood cells; there were 2 5-week cycles).  There was no option but to go with the treatment plan, or I could have literally dropped dead at any time (know of two people with the same form I had who did just that- though it took them about 24-36 hours for docs and their families to know they were not coming back from the bleed in their brains from such deficits in blood clotting; one was 11 years old, and the great-nephew of a friend).  In so many ways, I’m SO incredibly fortunate.  Does that make me a shallow jerk for focusing on my weight?

It’s not really about my looks. It’s about feeling physically uncomfortable in my own skin.  The photo isn’t a great angle, and my usual jeans/t-shirt ensemble isn’t very flattering – but you get the idea.   At least I wasn’t gross.  I was also somewhat miserable in this photo from the GERD… but I didn’t feel fat.  I was 43 in that photo…

I could live with this... c. 2007-2009; leukemia diagnosed in 2010.

I could live with this… c. 2007-2009; leukemia diagnosed in 2010.

SO, how to figure this out.  I don’t want to get sick.  I don’t want the torment of being ruled by calories and food.  I don’t want to be a slave to the scale.  Those years (which were on and off for about 22 years) were horrific.  I see people  (media, wherever) who have been engrossed in EDs for decades, and what merit is there in that?  My identity is in being an RN… not a stick, or something that others know is unwell.   I don’t want the mental fog as it relates to everything but the ED.  There is no life outside of an ED when someone is IN it.  Relationships with anyone and anything else are half-assed at best.  I don’t like the victim mentality of being caught up in anorexia or bulimia.  It’s so incredibly selfish, and I know that.  People want to either ‘rescue’ (those people are nowhere to be found when things get better) or run like hell from the chaos of someone who is ruled by numbers (that really mean nothing).

I go see my MD in a couple of weeks for a flu shot, and to discuss the bloating issues, as well as some other things that have been unpleasant.  If some of that could be managed better, I might feel less inclined to have to restrict a lot  in order to just feel ‘comfortable’, which will lead to weight loss, which is good, but can also lead to getting swept up in cutting back even more.    I know the cycle.  But looking at me now, I’m not taken seriously- so will have to approach this with my doc from the physical standpoint of the horrible bloating.

Ramble, ramble, ramble….  now back to regular programming.  :/