Feeling My Body Fail

This has been a rough six months on top of a weird twenty years.  I’d learned to deal with diabetes, fibromyalgia, chronic pain, degenerative disc disease, nocturnal seizures (left temporal), degenerative joint disease, GERD, and the temporary effects of acute disorders like multiple pulmonary emboli (all three lobes of my right lung and right pulmonary artery), and acute promyelocytic leukemia (APL), or acute myelocytic leukemia- subtype M-3.   The longterm effects of chemo have been rough and more noticeable  in the last few months, and the thought at this time is that much (not all)  of what has been going on recently is a combination of chemo effects, and  the progressive nature of diabetes (even with good control, though chemo totally ripped my blood sugars to shreds).  I had chemo DAILY for 20 months (ATRA – all trans retinoic acid, M6 mercaptopurine, arsenic, methotrexate, and initially daunarubicin, ara-C, and assorted meds for nausea, fluid retention, and protective eye drops.  I was also on gentamicin and vancomycin for most of six weeks.  I think that things are just catching up.

This summer, a lot started to happen at once.  The GERD (reflux) got really bad, so I was sent to a gastroenterologist (GI) for some testing.  Most of those tests turned out relatively OK (to a cancer survivor, that means nothing malignant… something could be rotting and ready to fall off of my body, but if it’s not cancer, it’s pretty much OK).  I have chronic gastritis (so no more NSAIDs – or ibuprofen type meds which is a bummer for pain management), and some irritation in my esophagus, and I was supposed to have a gastric emptying test (related to gastroparesis- a diabetes complication, but because of pain, I can’t lie on my back as long as is required…. and if I burp yesterday’s lunch in the morning, that tells me something isn’t moving).  I tried to have the esophageal manometry test done last week, but SURPRISE !!!  I couldn’t swallow the tube !   I’m being tested for swallowing problems.  Now, I have to be knocked out, and have the tube put in under anesthesia, woken up, then swallow water 10-12 times, then have the tube pulled out).   I’ve had to eliminate a few foods/food groups, but that’s OK.   Marinara sauce, chili, fried foods, ‘high volume’ foods (like full meals), and some other things are out of the picture for the GERD. I cheat once in a while, but have to have Tums and Gas-X available.   For the swallowing issues, dry foods, meat without ‘lube’ (sauce, gravy, stewed), celery, hard breads, rice without some type of moisture, etc are out.  I literally have to pull the food out of my throat before inhaling when something gets stuck.  I keep 8-inch curved hemostats next to where I eat. It’s rather scary.

The pain.  Oy.  I don’t remember ‘pain free’.  I’d gotten used to just dealing with it, but this summer, the neuropathic pain got very noticeable, and the burning pain along my right outer thigh got really bad at night.  Now both of my feet burn at night- though neither of them are every night.  The sensation during the day along my right leg is weird.  If I stand too long, I feel like my leg will give out.  I got a wheelchair last week, and the one time I have used it so far (only need it away from home at this point) has been very helpful.  I’m going to have to use the scooter at the grocery store from now on, and not have a three-day recovery period every month when I go to do my main shopping. I’ve got a few volunteers who have agreed/offered to come with me to push the larger cart.  It’s just too much now to do monthly shopping.  The pain management  doctor (board certified in pain management, and ‘legit’… no lines around the block, no shady characters in the waiting room, and lots of rules about how he does things that I respect) said that if the methadone doesn’t work, then the next step is a peripheral nerve stimulator… kind of like  a pacemaker device implanted under my skin that sends out little zings to trick how my body perceives pain. (BTW, methadone is a legitimate pain med, not just used for exchanging it for heroin in drug addicts).    I am usually pretty tough during diagnostic tests, and have had many, many MRIs over the years, but this summer I had to bail before the “with” contrast part was done.  I was in tears just getting the “without” part done.

I did get through the EMG (done at my neurologist’s office, by her), which clarified that it’s a progressive sensory peripheral neuropathy… it’s gonna get worse.  The implications are kind of scary. I’m already noticing some altered sensation in my hands- so being in the kitchen is a little dicey (pun intended).  And, if I lose sensation in my right foot, driving will be out of the question.  Right now, I have enough sensation- and I don’t drive much, so it’s OK for now.   A couple of weeks ago, I was opening a box of stuff I’d ordered (monthly Amazon or Walmart supplies) and I didn’t feel the inner angle of the scissors ‘catching’ part of the ‘pad’ of  my right thumb… and it got cut off (about the size of a pencil eraser- and completely cut off about 1mm deep).  :/   That was pretty sore for a while.  It’s still not completely healed, but much better.  I’m going to have to pay much more attention to hands and feet.  The decrease in sensation means that I could whack something off, get an infection, and end up with an amputation (pretty common in diabetics).   ‘Help’ aids for opening jars, buying pre-cut veggies at the store, etc are going to be things to consider.  I got one jar opening thingie, and it was useless…. it fit around the tops of many sized jars, but without the strength to hold the jar in my left hand, it’s pointless.   I can still do the vacuum release move with an old cheesy can opener, and then get the lids off- at least for now.

My blood sugars were also getting wonky again so it was back to the endocrinologist. She wanted me to try a new type of long-acting insulin- but as usual, I had to check my Medicare plan D formulary to see if it was covered, and at what ‘tier’ for copay purposes… this year, it’s not good; next year I can get it !!  I’m so excited to be able to get a type of insulin that wasn’t popular in the 70s !!  She got me enough samples to get through until January 1st, which brought me to tears.  The short acting insulin is also going to be doable next year- and she got me samples of those as well !!    It requires me to pay three times more for my monthly premium next year, but it’s SO worth it for no deductible, full donut-hole coverage, and good monthly copays for each medication (I’m on something like 15 prescription meds and many over the counter meds that are always out of pocket).

Then there are the changes in the symptoms with the autonomic neuropathy /dysautonomia.  I was sent to a cardiologist (I’ve been trying to cut down on the number of docs I see, and that plan isn’t working well).  Because of multiple medication changes for my blood pressure meds (which is actually used to keep my blood pressure UP in a paradoxical way), and my blood pressure going down far enough for long enough to decrease blood flow to my kidneys ( that was ‘fixed’ with medication changes and more deliberate fluid intake), I needed someone to take a look at what is going on.  Dialysis has always been ‘the’ diabetic complication that I’m not sure I’d get treatment for; a machine 3 times a week indefinitely doesn’t sound like quality of life to me.  Anyway, the cardiologist sent me for a simple ultrasound of my heart (ECHO) and did a simple EKG.  No results on the ECHO yet.  She adjusted a couple of meds, and the next step is to add another med, which I do NOT want.   I’ve had a LOT of episodes of near syncope and increased heart rate (not necessarily at the same time, but if my heart rate stays up, I generally pass out because it will suddenly drop; I have to get home and get my feet up or just go to bed – which usually takes care of it).

So, I’ve seen my primary care doc, gastroenterologist, pain management doc, neurologist, endocrinologist, and cardiologist since this summer.  I do not like doctors’ appointments.  Leaving home is painful.  They usually want to order tests, which means more time away from home.   I appreciate their help (though the GI situation is horrible to get anything done; right now, I’m waiting to get the anesthesia assisted tube placement to measure esophageal spasms -achalasia is suspected-, and they have a very blasé attitude, even when I’m pulling food out of my throat because it won’t go down).   I need to get things treated to the point of maintaining independence as much as possible.  And, I’m going to have to suck it up and ask for help when needed.   That is hard, since most of my friends are 1200 miles away… or have lives/families/jobs/etc.   And I don’t like to be ‘dependent’.

I know I have a lot to be thankful for.  I’m still in my own apartment.  I still have my dog.  My dad is around (he’s 83, and has a full life; he’d help but the ongoing commentary at the grocery store for a full month’s shopping would be too much- he doesn’t shop for more than a few days since he eats out a lot), and he is a huge part of my life.  I have a lot of online friends and family.   I’ve got family in other states that I’m in contact with.  There’s a lot of good.   But it’s hard to see things changing.  Fortunately, as an RN- disabled, but still have my license- I know what to look for, and know what types of ‘help’ devices are out there.   I know when to ask my doc for things like the wheelchair.    I’ve got some word-finding issues, but my brain seems to be mostly intact- LOL.  😀   Always stuff to be thankful for 🙂

 

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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.

Sometimes Being Homebound and Isolated is Really Hard

Considering what has gone on with three people who have been very important in my life this year (they died), I have to know that I’m very fortunate.  Two had battles with horrible cancers between 9 and 10 months long, and one had a sudden collapse with an aortic dissection, but lived two more days…. she had been over a few weeks earlier talking about limited time. Maybe she know something was up, or was just being realistic that at 89 years old, she wanted to get things in order.   We had a really nice visit that I’m so thankful for.  The one who had the 9 month battle with colon cancer is a cousin I had a lot of  phone and e-mail contact with during her horrific struggle.  The other was my dad’s lady friend from church;she and  his first cousin (with the aortic dissection) had services last week.  I wasn’t able to go to either, but did at least meet the lady friend’s family, who I’d heard about for years, and felt a need to pay respects to them; we’d all heard about each other for years. I couldn’t stay long, but at least I popped in after the service for a few minutes.  I will miss them especially during the holidays, but also in general, as they were either family, or just about, as she and dad were buddies for church dinners, going out with friends, etc.

Overall, I really do realize how fortunate I am, but I don’t have many perky days when all is sunny and wonderful. There are some times when I just get overwhelmed when I think about what I used to be like.  Other days, I do my best to get by, and I do still have a lot that I enjoy from home. I still get to help out family and friends with medical  questions/translations- and I’m very glad to do that.  It helps me feel useful in some way.  And I get rather nostalgic about the days when I was working 3 12-hour shifts a week as a charge nurse in some sort of facility (hospital, drug/alcohol rehab, adolescent psych), or the Monday-Friday desk jobs entering assessment data into the computer for Medicare reimbursement and/or care planning for skilled nursing facilities.  I also did some stints on neuro floors, head injury rehab, and pediatrics- so a greatly varied career that I miss.  A great thing about nursing, especially in Central, rural Texas between 1985 – 2002, is that when I’d get bored with something, I had no problem finding another job within days.  Sometimes the offers were waiting for me on my answering machine when I got home from the interview.  Being an ADN, and not having a 4-year degree was never an issue, either as a staff nurse, charge nurse, weekend supervisor (only RN in the building/facility), or department head.  I was lucky to graduate from nursing school in 1985 when we were expected to know how to do procedures and skills, or we didn’t graduate.

Then came disability in 2004.  I fought through 8 years (starting in Texas) of trying different medications to regulate the fainting and weird episodes where I turn beet red, then a bluish red, before becoming pale and cold like a corpse. For eight years, I muddled through, and even had several decent years after the neurologist down there wanted to try an off-label medication.  By the time I was told I was no longer OK to work (by my boss in IL in 2004), it crushed me.  My identity had always been as an RN.  I didn’t have a husband or kids, so no other roles.  My relationships were all with co-workers in Texas ( even though I’d moved back to Illinois, where I was basically thrown away- nobody returned calls, and one former coworker went out of her way to avoid me at the grocery store).  I’d gotten sick- I hadn’t embezzled anything !  I guess it’s a Yankee thing. :/

That started some very chaotic years of figuring out what meds would help with the worsening symptoms (fainting more often, with some injuries including a concussion, and torn meniscus on my right knee requiring a knee replacement, some very strange medication interactions that caused a small stroke, many blood clots in my right lung, and ultimately leukemia (AML, subtype 3, or APL) which required chemo that worsened the autonomic disorder with thigh atrophy and increased sensitivity to heat).  I was a ‘regular’ at one of the ERs early on, and they treated me like trash.  Had I not gone to a decent ER with the blood clots in my lungs, I likely would have died – they were numerous in all three lobes of my right lung and pulmonary artery, and in various acute, subacute, and chronic stages.  The apex of my heart had pressure against it from my lung pushing into it.  It was bad. I only went to the hospital because I thought I was having a heart attack.

I’ve been essentially homebound for ten years.  I’m not sure that many people really understand what that means when “friends” here (coworkers) disappeared as soon as I left the parking lot on my last day.  I do have my dad, and a couple of friends here- one in particular makes an effort to come over periodically, and has done a LOT of work helping me get things organized so that I can get “stuff” minimized around here. She has been incredibly helpful once we found each other again on FB a few years ago.  I have been invited to family holiday parties- which I can attend one of, after everyone eats, since hot food in close proximity to body heat of other people is a problem- so I go when I’m less likely to stick out as being totally weird.  I really like that family bunch, and I hope I don’t come across as not liking them.  I just can’t tolerate a room over 66 degrees.

There are days when I don’t hear another human voice other than my dad (who is 82 and healthy, so I’m very thankful for that). We try to do daily “attendance” checks with each other, and he is really a huge asset in my life for many reasons… he always has my back.  I know he will never give me bad advice.   I might not see another human more than once a week (again, dad) for a few weeks at a time.  The phone rarely rings… usually it’s dad, my birth mom, or a reminder for  a doctors’ appointment or test (this week it’s an abdominal/pelvic CT for some intense bloating likely related to the autonomic problem).  Facebook is my primary form of contact, and I’m incredibly grateful for that; prior to getting this laptop from my birth mom and cousin, I was even more alone… now I can at least keep up with people I’ve known for years, whether from work, family, or childhood.   I challenge anyone to unplug the phone, have nobody show up at their door, and not hear another live voice in person for days (and occasionally weeks) at a time. It takes getting used to- and even now, it’s still hard.

I miss seeing co-workers and patients.  I miss being able to just go out and do something social without having to deal with the logistics of cooling vest equipment, distance from home, how I’m going to get there, can I leave if I need to, etc.  There are no ‘going out to lunch’ days (who would I go with?).  My dad is the one I go places with on the days when I can go (and I know I’m the most undependable ‘date’ with frequent last minute cancellations because of symptoms of some sort).  He knows that when my cheeks turn a deep bluish-red that it’s time to go.  And he’s always willing to take me anywhere.

People don’t understand that I can’t unload the dishwasher and fold laundry in the same day, or I end up with spasms from the base of my skull to my lower back, and am useless for a day or two.  Chronic pain isn’t ‘seen’.  Fibromyalgia and degenerative disc disease are chronic and  the DDD, will get worse (degenerative is a clue)- so I pace what I do as much as possible.  I miss the days when I’d set my mind to doing something around my apartment, and not stop until it was done.  That’s long gone.  I ‘look OK’, so I’m not sure people understand that I really am doing the best I can.  I live independently (getting many things delivered to my apartment from Schwan’s- frozen foods, Amazon, and Walmart).  I go to the store about once a month… maybe twice if it’s a good week about halfway between disability checks.   I still want to do as much as I can myself, so I don’t lose any more muscle mass.  The initial chemo took up about 20 pounds of muscle, and then the neuropathy in my thighs took much more – while I gained weight on chemo (not easy for my head to deal with, or to get rid of the poundage).

I’ve written about the expenses of Medicare and medications not covered in other posts. Buying insulin from a part D plan guarantees that anyone on it will go into the dreaded ‘donut hole’ where meds are NOT covered by the Medicare drug plans.  Most diabetics are on several medications.  The donut hole is dangerous.   The ‘good’ insulin is upwards of $200 per vial….between the two types of insulin I use , if I got it from the part D company, that would be $600 a month just for that- minimum… Thank God for the  cheap stuff from Walmart; I’d be sunk without it.  I don’t understand why insulin (the better stuff ) – a drug that is absolutely necessary for many diabetics- is so  unattainable.   I worry about this sort of stuff…

But mostly, I miss the things that I used to take for granted… seeing coworkers, having daily contact with other humans, having a purpose that felt like ‘me’ (being an RN), and not having to plan for every contingency every time I leave the apartment, even if it’s only for an hour.   My short term memory and word-finding are still not back to normal after chemo.   Going to the store for fresh produce every week has been long gone.  I might figure out something with dad, to go with him a couple of times  a week to get fresh fruit and veggies.

I really do have a LOT to be thankful for.  I have survived a lot.  During my 55 year old cousin’s final weeks, she weakly asked why I was allowed to live and she wasn’t- not in a nasty way, but in a tone that just sounded like she was trying to make sense of things.   I don’t know.  I know I must have some reason to still be here.  I hope I can make a difference somehow.  The blog helps… I keep track of my stats, and more than 100 countries have hit more than 16, 000 times.  At least people know I’m still here… that and Facebook. And my dad and a couple of people I see every month or two.  That they take time out of their busy lives (and they are busy !!) means a lot.

I’ve got God, my dad, my birth mom, folks on FB, and my dog- who is my main companion and pretty good at it 🙂   So, even though I miss what my life was, I’m at least alive, and still able to live alone, and figure out how to get things I need.   I truly am thankful for that. I know that there are others out there who struggle a lot more.  I remember those people I used to take care of that were never going to live on their own again.  I don’t know where the dysautonomia, diabetes, degenerative disc disease, degenerative  joint disease, or lung scars from the clots are going to lead me… but I’m sure I’ll figure it out.  I always seem to land on my feet 😉

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.  :/

 

Sorting Through The Symptoms…

 I’m whining.  *** Warning *** I’m not chipper and smiley right now…

Read at your own risk 😉

This has been a weird few weeks.  Actually, things started to get worse with the dysautonomia during chemo for leukemia, which was fairly expected, but it’s getting worse.  Chemo messes with autonomic dysfunction, especially with diabetics, or those with previously diagnosed dysautonomia.  Add in some menopause, and changes in some medications/insulin- and the party just keeps getting better.  I’m tired of trying to figure out what is from what (fibromyalgia/chronic pain, chronic migraines, chronic headaches, reactions to foods, etc).

This past weekend (a few days after two epidural injections- one in my thoracic spine, and one in the lumbar spine), I had some horrific nights with severe leg spasms and cramping. Normally, I don’t have any type of reaction to the steroid injections, other than a day or so of higher than usual blood sugars, so I didn’t really think that was the cause.   I’ve had these  spasms before, but usually getting up once and forcing my feet into a ‘flat’ position, then walking around for a few minutes generally helps.  Friday night was like that.  Saturday night was a nightmare.  I was up every 45-60 minutes, with spasms that actually made the calf muscle (the ‘drumstick’ one) have an indentation in it (like a shallow dish) until I could get the muscle relaxed.  These types of muscle spasms are incredibly painful, and I find myself doing  sort of breathing that reminds me of someone giving birth on TV. Or acting like it.

I finally gave in and called my pain doc early Sunday morning – around 7:30 a.m.  He was very prompt in calling back, and heard me out when I  asked about serotonin syndrome- which he didn’t think was likely. That was good news (no need to go to the ER).   He did  tell me to not take the tramadol anymore, just in case.  I’ve been on methadone for pain for several months now, and had noticed that it wasn’t working as well with that original dose (which spooks me after watching people detox from methadone when I worked drug/alcohol detox.  It’s THE worst type of detox that I’ve ever seen -and I’ve seen lots of alcoholics, cocaine/speed addicts, heroin/opiate addicts, and benzodiazepine addicts- they have a ‘bonus’ 10-15 days after they stop taking the benzos, with another round of acute symptoms, etc).  I’ve been chicken about even taking methadone- but it’s a legit pain med, not expensive- AND, when used as prescribed, it’s safe. I use it as prescribed, and it still gives me the creeps.  I’m lucky to have found a pain doc who doesn’t just write prescriptions right and left.  There are ‘rules’ for being one of his patients.  I respect that.  At any rate, he told me to take a bit more methadone then and another muscle relaxant, and try to get some rest.   I did as I was told, and did get some sleep.  During the worst part of the spasms, it feels like the muscle is being torn from the bone- that has stopped, thank God.   Today has been one of fatigue- but no more spasms.

Trying to figure out what is going on when I start having symptoms can be tricky.  I had e-mailed my primary doc about the symptoms on Friday evening, and she wants me to have some lab work done, which is a good thing.  As a diabetic, I’m a little on the paranoid side about my kidneys.  The chemo was hard on my blood sugars, and I’ve got them MUCH better- but still some wacky ones here and there.  I’ve had a lot of peripheral and autonomic neuropathy symptoms- so that’s sort of my ‘default’ assumption when something is weird.  I get flushed, my skin is hot- but I can feel cold (strange for me), I get blotchy areas on my chest, and in general don’t look OK….

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

It’s hard to know if muscle cramps could be from potassium, sodium, calcium, or magnesium deficiencies (and those can get really bad- as in don’t make plans for next weekend, since you could be six-foot under by then).  Bulimics are very prone to those- and electrolyte deficiencies are big in sudden deaths from eating disordered patients.  But I’m not in that category any longer, thank God.  The peripheral neuropathy (likely diabetes related) in my legs doesn’t help.  My thighs have deteriorated, and actually shrunk (posterior thighs)- so they tend to hurt faster than before, after doing anything.

My blood pressure has been crazy again (directly from dysautonomia changes), and I’m going to have to start a different form of propranolol (Inderal), as every Medicare part D (drug plan) formulary I checked has cut out the extended release from the generic list.  It’s been generic for a LONG time- but now it’s priced in the ‘preferred BRAND’ category.  I have too many meds to spend a $42 co-pay for 90 days for one med (well, actually two- they cut the extended release seizure meds as well- but I do OK on the regular release form of that).  I already have to pay out of pocket for insulin and syringes, since getting them would push me into the ‘coverage gap’ (donut hole) requiring ALL meds to be out of pocket- which is a map for going straight to non-compliance.  And a non-compliant patient is loathed by medical professionals.  Doesn’t matter WHY someone doesn’t take their meds. There are a LOT of us out here who have to juggle medical expenses to be sure there are funds for the entire year.   Medicare is not free.   Anyway, the symptoms are acting weird, and some days, it’s hard to get much of anything done.  BUT, I still have so much to be thankful for.  I can still think, and put together what I think is going on so I can tell my docs the information they need to know.

Menopause is a special little treat that makes the dysautonomia worse. I have had a few hot flashes- and thank GOD that they aren’t the same as my general heat intolerance.  They are brief, and feel like fire from inside… I adjust the air conditioner (had it on when it was 17 degrees Fahrenheit this winter), and ride it out.  I hadn’t expected the ‘morning sickness’ from the hormonal mayhem, so Phenergan and Zofran have become good friends.

Oh well, done venting 😉   It’s been unpleasant.  But, I’m still living indoors, and have the blog and other online interactions (though the public comments on most sites aren’t worth the nastiness).   I’ll get the blood test done this week.  Onward !

UPDATE:  The Propranolol LA 120mg (generic for many, many years) is actually $77 per MONTH out of pocket.  And I have to have it.  I tried the regular release and all I did was sleep, get up to take meds, and sleep some more.  My life is limited, but being awake is one of the perks I do look forward to.

Turning 50… and Already On Medicare For Six Years

I turned 50 years old today.  I can’t figure out where the time went !  I certainly don’t feel ‘old’, and think that 50 is the new 30, even with the physical limitations I’ve had for years.  I’ve never been one to get all depressed or stressed by ‘big’ birthdays- 21, 30, 40…. but I’m not so sure I like this one.  I started falling apart physically quite a while ago.  It makes me a bit nervous that things could slide downhill more quickly now.  😦   Mortality gets much more real.

I’ve heard (and said) that a lot of how old someone ‘really’ is depends a lot on how old they feel mentally, and how old they ‘think’.  My head still feels like I’m in my late 20s.  My body has felt older than dirt since the mid-90s, before I turned 40.  But I don’t ‘think’ old.  I’ve had to deal with chronic health issues and Medicare since my early 40s. The list of medical issues still hasn’t changed how old I ‘think’.  I have started thinking more about how I’ll manage if my body falls ‘more’ apart.  But my mental outlook is still pretty youngish.

My dad and I went out for lunch the other day (I rarely go out to eat because of the thermostats at most restaurants being set too high for me to be able to stay conscious, even with the ice vest).  I was really excited, as we went to a favorite Swedish restaurant that I’ve been quite fond of since I was a kid.  I mentioned to the waitress that it was the first stop in my 50th birthday celebration, and she was surprised that I was going to be 50… said I looked MUCH younger (quite nice of her).  I don’t have any wrinkles, and my hair is kept short on purpose to avoid being overheated, so the gray at my temples isn’t all that noticeable (though it is definitely there !).  That felt good- at least I don’t look ‘older’.

I’ve already gone through several life-threatening events/diseases (6-hour rape and beating when I was 23, leukemia and 19 months of chemo at 46, etc, blood clots in my right lung – all three lobes and right pulmonary artery), and have chronic illnesses that have required life adjustments or are disabling: diabetes at 31, dysautonomia diagnosed at age 32, epilepsy diagnosed at age 22, degenerative joint disease at 43, chronic pain/fibromyalgia at 32, chronic headaches since I was in high school, osteoarthritis at age 43,  degenerative disc disease at 43, yadda, yadda, yadda.  I’ve been disabled since early 2004. The chemo for the leukemia has made several of the pre-cancer disorders worse.  It sometimes gets a bit scary to think that I could become more of a train wreck with ‘normal’ aging.  I’ve recently been diagnosed with neuropathy in my legs (they’re literally losing muscle mass that is now visible).  They have been getting progressively weaker for a couple of years- since/during the chemo.  If I don’t have a shopping cart at the grocery store, I can’t  get through the building on my own.  Standing in line means increasing leg pain, and feeling like they’re turning to jello in terms of strength.

I’ve been on Medicare since I was nearly 44.  Though I’d dealt with Medicare as a nurse before becoming disabled, being ON Medicare is a totally different kind of circus.

Medicare costs a LOT to have.  People get the idea that it’s a free government program.  That is wrong.  First, working people pay into Medicare every paycheck in the form of Medicare taxes. For some people, it does cost to get Medicare part A  ($441/month in 2013) if specific situations apply. Those who paid into ‘the system’ while working don’t have to pay a part A premium.  Part A pays for a large portion of hospitalization charges  and rehab in a skilled nursing facility, home health care,  hospice, and inpatient care in a religious non medical health care institution.  If someone is admitted to a  hospital for ‘observation’, that doesn’t count as a hospital ‘admission’, so the charges come out of pocket !  In either case, Medicare doesn’t cover %100 of the costs.

Then there is a part B premium (around $110 per month), and covers outpatient doctor visits, various health screenings, ambulance charges, ambulatory surgical centers, diabetes education and blood sugar testing supplies, some chiropractor services, durable medical equipment (like walkers, wheelchairs, prosthetic items), emergency department visits, flu shots, and several other services- generally at %80 coverage.  That leaves %20 to be covered by the patient.  That can add up quickly.

The part D (prescription drug plan, or PDP) can cost a varying amounts. Because of my cancer history and extensive medication list, I get the highest level of benefit plan I can- so about $80/month.  It really pays to shop around.  One of my chemo drugs for the leukemia (that had no alternate option) was about $10,000 per MONTH.  With the PDP I had at the time, my co-pay was over $450 per month.  I’m on many, many other medications including insulin which doesn’t have a generic option.  When the social worker at the oncologist’s office helped me find a different PDP company, all generics- including that $10K drug- had a $0 copay when ordered through the mail-order pharmacy. But I couldn’t change to the new plan until open enrollment that begins in October… I left the hospital in May. Fortunately, a pharmacy agreed to help me after the Lymphoma and Leukemia Society agreed to help (which they later reneged on).  That pharmacy ended up ‘eating’ the cost, as I had no way to pay for it.

Part C refers to Medicare advantage plans.  Medicare contracts with private insurance companies to deal with the paperwork.  They are often very reasonable in terms of premiums, and often include the PDPs.  I’ve been on advantage plans, and while they look great on paper, with a 6 week hospital stay for the beginning of the leukemia treatment, the copays added up in a hurry.  I’m still paying off one hospital bill, 3 1/2 years later.  The cost for that inpatient stay was over $300K.  The plan paid a LOT.  But it still left a lot of out of pocket expenses… nobody plans on having something bad happening.   I can’t emphasize enough how important it is to plan for the worst and hope for the best.  I’ve had to file bankruptcy in the past (before the leukemia)  because of medical bills.  No credit card shopping sprees, no trips to wonderful places…. ‘just’ medical bills.  Getting extra disability insurance is also a huge help when it’s needed.  I have always insured myself to the hilt when I was working, and until my last job, never needed it.  But it’s literally keeping me living on my own at this point; disability from Social Security isn’t enough to live on with medical expenses.

Then there is the Medicare supplement plan (or Medigap) to cover the costs Medicare doesn’t pay for.  The first few days of any inpatient hospitalization generally cost the patient at least $200 per day (and there may be a several thousand dollar deductible).  There are also portions of physician charges, lab/x-ray/test costs, pharmacy costs, etc.  The supplement helps pay some or all of those charges, depending on what  level of  benefits someone decides to get in a supplement.  I go all out with my supplement plan (Plan F- all companies have the same coverage for each level of supplement insurance, so it comes down to premium cost and deductibles). I have NO co-pays for any inpatient or outpatient medical situation.  That will cost $325/month this coming year (2014)…and my insulin is about $50/month (not including syringes/supplies).  The MONTHLY total to be on Medicare (for me) is over $515.  On disability income. But, I know that I’m not going to have ‘extra’ medical costs.  That’s a sort of peace of mind that really doesn’t have a price tag.

Plan as if you will someday lose your job for medical reasons (and pray you won’t !).  If the time comes (and nobody ever knows if a car wreck, disease, or other medical problem will creep up on them), you will NOT regret having paid the premiums for all of those years.  And shop around with Medicare supplements and drug plans.  It makes a huge difference as well.

What NOT To Say To Someone Who Is Disabled or Dealing With a Serious Illness

I think most people are trying to be helpful or supportive when they make comments to someone about their health and/or treatments, but there are some things that  those who have not experienced the situation should just stay quiet about.  Some things are just not helpful, and some are ‘enough’ to ruin a relationship.  These are some of my ‘just don’t say it’ things:

1.  “You look OK.”… to me, that means “there must not be anything wrong with her- she’s just a wimp and making a big deal out of nothing”.  You spend a day in my body, and get back to me.  Diabetes, seizures, neuropathy, chronic pain, migraines, degenerative joint and disc disease, and a multitude of other disorders have no outward symptoms that scream out their identity.  There is a fine line between “You look OK.” and “You look good”.  When “You look good” is said following a long fight with an illness or its treatments, and someone is ‘coming back’ to their ‘usual’ self, I never found that offensive.  It’s a totally different situation.  But “You look OK” = “buck up and get with the program, you sloth.”   Trust me.  I’ve tried the best I can, and managed to get 8 years more to work with the initial medications (once the right ones were figured out). Going on disability was NOT my idea.  My employer at the time told me they couldn’t have me around (go figure, I was passing out all the time).

2. “Your doctors sound like idiots.” (opinion usually based on the online ‘research’ that is mostly from sites that are trying to sell a product– and have an 800 number at the bottom of the page, and/or ‘proven’ by someone with a plumbing or agriculture background).   Many times, this is ‘pushing’ some sort of Eastern or alternative medicine instead of the treatments that have been researched and gone through trials, with proven success rates that are better than not having that particular medication or treatment for that specific problem.  I have no issue with alternative medications, and use homeopathic headache medication as well as herbs and supplements for headache prevention/ minimization … but I have run those past my doctors before taking them. I also use Western medications for the same problem.  While I was on chemo, I took NOTHING that my oncologist didn’t approve.  There were very specific things I couldn’t have because of the type of chemo I was on.  There was  a massage/aromatherapy person who came by every day I was in the hospital, so some alternative things were offered.  I’ve been offered various products/ideas to replace medications by well-meaning friends.  Here’s the thing- it’s my body.  I trust who I trust, and it’s not someone online I’ve never met.  It’s not someone who has never seen me or my test results.  It’s not someone who has no interest in me if I don’t buy their products. When I have decided to switch doctors, it was MY decision based on how I felt about the care I was getting.  And, I never trust anybody who has credit card acceptance comments and images at the bottom of their ‘professional’ page.

I must admit, I have been annoyed by doctors I’ve heard about and gone off the rails with my responses- but once discussing the situation with the person- and I more fully understood what was going on, all was well- and bottom line, I respected their gut feeling about what was going on.  🙂 But, nobody needs to hear that their doctors are idiots… they’re depending on those doctors to be sure they’re still going to have a normal lifespan.

3.  “You should/shouldn’t eat X, Y, or Z.”  During chemo, it could have been lethal to eat fresh fruits and vegetables that someone else didn’t peel, because of the microbes that can still be on them even after washing. Because of the immune system ‘attacks’ from chemo (and in the case of the leukemia I had, the cancer itself long before the chemo kicked in), there are times when an otherwise harmless ‘bug’ could cause a fatal infection. Produce is covered in ‘normal’ bacteria, fungi, spores, and viruses- a normal immune system handles them with no problem (they can’t all be washed off).   And when my absolute neutrophil count (ANC) was below a specific number, I couldn’t have any fresh unpeeled produce around (and wasn’t given permission to peel them myself even with a mask and gloves– the risk was just too great).  I’d already had a couple of nasty infections from otherwise puny things that caused delays in chemo and/or the need for extremely potent IV antibiotics for 5 straight weeks, or antivirals for 3 weeks (BAD ear/neck infection,  and shingles during the first year).  Normally, fresh produce is felt to help prevent certain cancers… but with chemo and the effects on the immune system, it is critical to not violate the food rules !  It’s all temporary.  Better to go with what is likely not to cause more problems !  When it’s not potentially lethal, then of course- fresh foods are the way to go 🙂  There was also a very strict ‘don’t eat’ on things with a lot of Vitamin A, since one of my primary chemo medications (ATRA) was essentially a form of Vitamin A in mega form.  Vitamin A is fat soluble, and can become toxic in the body since it builds up (so can E, D, and K).   I had very specific instructions about not eating Vitamin A ‘heavy’ foods (carrots were a particular ‘loss’).

4. “Oh, disability must be just like an early retirement!”  Seriously?  People think this is some sort of ‘perk’ ?  My life was taken from me in terms of everything I knew to be my normal life.  I still grieve the loss of being a  working RN.  I’m having to make 2/3 of my income ‘work’.  I can’t leave home without medical equipment.  I have 32 pills to take on a ‘good day’ when I don’t have to take anything for an ‘as needed’ situation.  I’ve had to deal with Medicaid (a joke- they don’t help much at all, and it’s humiliating to need it), Medicare (very expensive to be on), the Part D prescription plan (which limits my access to the best insulins due to cost), the legal system, with bankruptcy prior to Medicare (extremely shameful to have to do that), etc.  It’s been hell.  Yes, I have many things to be thankful for- but this is no picnic.  I’d much rather be doing 40 hours a week and being useful. Now, it hurts to make a sandwich or empty the dishwasher.

5.  “Well, when you finally feel like it, we can ______.”  Don’t hold your breath, sister !   “Chronic” and “disability” don’t mean this will run its course, and I’ll be fine.  How I wish !   “Degenerative” means I’m going to decline.  I’m the one who should be having more trouble accepting that- why is it that others just can’t grasp the concept that some things can’t be fixed?   Don’t make it sound like it’s somehow up to me for this to all go away.  Don’t make it sound like I’m just not trying hard enough. Don’t make it feel like this is my CHOICE !  When someone says ‘finally’ it implies that there’s something voluntary about all of this.  If there were, I’d be in a way different place, working, and living a ‘normal’ life.

I’m doing the best I can.  If I were physically able to do more than I can, I’d be doing it.  I feel fortunate to be able to take out the trash and not need 2 hours to recover.  I’m always glad when I get home from the grocery store, and didn’t have to stop unloading the car because I felt like I was going to pass out.   I’m adjusting the best way I know how, which is to try and be thankful for what I have left that I enjoy, and am glad that no matter what happens to me, I still have God.  Some people don’t understand that.  For me, He’s a lifeline. ❤