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 😉

The Psychotic State University School of Nursing

I must say that the vast majority of nurses I’ve worked with over the years have been wonderful.  Some were a bit on the side of displaced sorority sisters in need of a house (annoying and way too old to be stuck in an early 20-something mentality). And there were some that just left me with my jaw dropped through to the floor below me or backing away in fear.  The graduates of Psychotic State University’s School of Nursing. A frightening lot of the eternal mystery of  WHO LET THESE PEOPLE GRADUATE?  I understand someone needing to be at the bottom of the class, but puhleeze….

One of these miracles in self-survival worked with me on an acute neurology floor. Most of our patients were at least partially dependent for just about everything. Everybody helped each other out when moving these patients up in bed, cleaning them up, or transferring them to recliners or chairs.  One ‘special’ nurse (I’ll call ‘J’) was nothing short of mind-boggling.  I’d gone in to help her move her patient up in bed, and since we all had helped each other do this a bazillion times, there was an unspoken ‘dance’ in getting the job done. Put the side rails down, put the head of the bed down, move the patient up, put the head of the bed back where it had been, make the blanket look spiffy, get the side rails back up, get the call light within reach, and leave. Done.  Depending on how tall the bed was, we’d raise it to a ‘working’ height (to save our backs).  Anyway, I had started putting the head of the bed down (it was still moving) and noticed ‘J’ fiddling around on the other side of the bed, mumbling to herself.  I asked what she needed and she replied “I’m trying to put the head of the bed down.” 😮   I’m sure my eyes bugged a bit.  Another night, a bunch of us had decided to order burgers from a nearby place, and I asked ‘J’ if she wanted to order anything. Her reply:  “I don’t like Chinese food.”  Alrighty then….no Chinese burgers for ‘J’.  *shaking head* While she never smelled of a particular herbaciousness, there were suspicions.

At this same hospital (which really was a nice place to work- these examples were the flukes of nature that joined us for a period of time), there had been some budget cuts and an associated long term care portion in a free-standing building across town was being closed down permanently.  The staff nurses there were being dispersed throughout the hospital, ready or not.  Long term care nursing is its own animal.  I’ve worked it, and loved it- but it is NOT the same as acute care nursing.  The skill set is much different- and in some ways much more varied than the specialty floors set up in that hospital.  Well, our ‘gift’ from the defunked facility was nearly a fossil herself. She had to be older than many of the patients she took care of.  She was pleasant enough, and easy enough to get along with, which was always tricky in a group that had worked together for any period of time and knew each others’ strength and weaknesses’.  But she was a bit ‘thick’.  Normal conversation seemed to be a bit of a struggle for her. And her hearing was fine. Evidently normal nursing skills were also a bit difficult.  We had a policy that all insulin doses were double checked by another nurse.  One day she asked me to check the dose she’d drawn up.  No problem. Glad to help.  I nearly passed out when she showed me a 3-cc syringe with the insulin in it.  For those not in the medical loop, insulin is drawn up in very specific insulin syringes with 1-unit increments marked on the side of a ONE-cc syringe.  I was dumbfounded. I think part of my jaw may still be on that hospital floor.  I asked her how she knew how much insulin she had in that thing.  She had crickets and the deer-in-the-headlight thing all going on at the same time. She didn’t know.  And it didn’t seem to bother her that she was about to kill someone or leave them in a vegetative state. I’m not sure exactly what I was supposed to check, but I checked my butt on over to the charge nurse after taking the syringe away from Nurse d’Permanent Sleep.  Oy.   Needless to say, Einstein was sent for some ‘remedial’ education. We never saw her again.

At a drug/alcohol rehab place I worked at, many of the nurses were primarily psychiatric or chemical dependency rehab nurses. No problem since that’s what we dealt with %99 of the time, and the medical complications that came up were usually pretty specific to detox.  But…we had patients who had some ‘side effects’ to their years of drug usage that were emergency situations when they happened.  One weekend night nurse (a ‘traveling’ nurse- who were also good for the most part) was giving me report one morning about a new patient who had a high fever earlier in the shift (let’s say 103 degrees for some reference point).  This nurse was SO proud of herself that she’d been on top of things with Tylenol, and the guy’s temp was now hovering in the 97-degree range. That was NOT good news. When someone becomes septic, the body fights with a fever as a way to help heal itself; when the temp goes sub-normal it means the body can’t cope any longer and is decompensating. The train to dead has left the station.  I couldn’t get out of report fast enough to see if the guy was even conscious anymore.  He was, but looked BAD.  I got the OK to send him to the local ER to get labs done (and I couldn’t imagine them not admitting him to ICU). I was pretty sure he was in septic shock.  The local ER didn’t like drug patients, and sent him BACK to us after drawing the labwork.  Scared me to death.  I’m not sure what we did that day to keep him from dying, but the next morning I got a call from the hospital telling me his blood cultures were bad. Ya think?  He was an IV drug user with a massive infection around his heart.  The drug rehab doc arranged to send the guy back to the hospital where he stayed for a couple of weeks on IV antibiotics before returning to complete his drug rehab, with another 4 weeks of IV antibiotics every 3 hours (at a facility where the nurses weren’t used to giving IV meds, or dealing with a PICC line- I didn’t mind).  He was a great guy who got a second chance, no thanks to the Tylenol dispenser.  He should have been shipped out while his fever was high.  High fevers were not typical of what we used to see, and in an IV drug user should be a huge clue that something is wrong.

One of my nursing student compadres was ‘interesting’.  He reminded me of Waldo from ‘Where’s Waldo’ fame, sans striped clothes and beret.  Tall, skinny, huge glasses, and screamed “I’ve got uber-geek genes’. But he was very sweet. I got paired up with him to do a report on riboflavin during our Nutrition class. We had arranged to me AT the library at a specific time.  I got there a bit early, and waited.  The arranged time came and went.  OK, maybe he got hung up somewhere. SO I waited a bit longer. Nada.  I peeked inside of the library, and he wasn’t there. I wandered around, looking around the library and inside of the library, and never found him.  The next time we had class, I asked him why he hadn’t shown up. He looked baffled and said “I was there !  I was in the back in one of the cubicles.”   Really?  I was supposed to find him in the library’s equivalent of a cave?  I asked him if he crawled in the trunk when someone told him to meet him at the car…   I did my own report, and got an A. 🙂 This guy- sweet as he was- didn’t make it through the first class that newbie RN students take (Fundamentals of Nursing).  God looked kindly on patients everywhere.

I’ll think of more ‘special’ nurses to write about.  I learned something from each of them, and wondered how they ever got through the nursing schools they went to, or hadn’t been reported to the nursing board for being dangerous (even if unintentionally- they weren’t ‘killer nurses’, they were idiots).  I was scared for their previous patients; maybe they were no longer able to complain about the nurses in question… 😮

Well Pancreas, It Was Nice To Know You

Sigh.  I’ve known something was wrong since my blood sugars started going insane while I was on chemotherapy for leukemia.  For the year on chemo pills methotrexate, tretinoin, and M6mercaptopurine, and the prior 50 doses of arsenic (IV), my blood sugars have been impossible to control if I ate anything at all.  So, I did some reading and found that the immunosuppression effects of chemo may have caused enough damage to my pancreas that it no longer produces any insulin.  The weight I gained on chemo make my body resist any insulin (‘homemade’ or shots).  So my blood sugars are insane.

Let me rephrase that.  I can’t get my blood sugars to the level of control I had prior to the chemo, which was essentially that of someone without diabetes.  I took 4-5 insulin shots a day to keep it ‘normal’, but that was a small price to pay to buy some insurance for my eyes, kidneys, and legs.  My last HgA1C (the number that shows 3 month ‘average’ blood sugar, that is helpful for showing overall control) wasn’t that bad in February 2012.  But it was up by 1.5 points from pre-chemo.  That’s not acceptable.

While I was still on the chemo pills, I had days when my blood sugars would actually go into the 300s.  It hasn’t been that high since I was diagnosed in 1995.  Most days I went into the 200s.  My ‘old’ normal was to have a fasting blood sugar between 65-85mg/dl, and a rare 100-105mg/dl.   Now, with tight monitoring over the last week (and a trial of different insulin dosing patterns), I can’t get it below 130mg/dl.  That’s not acceptable.  I’ve been ‘eye-balling’ my carbohydrate intake for months, but started writing down everything this week.  It’s not what I’m eating.

My weight gain since being on chemo has also been an issue.  Insulin stores fat (and I’ve had to use more insulin).  Fat makes the body resist insulin so it needs more insulin; it’s a vicious cycle.  I’ve been eating around 1400 calories, and I’m not losing weight (I was told to consume 1400-1600, so I’ve been at the low end).  But I’m having to use a lot of insulin, so what I’m eating is being stored.

I’ve seen my internal medicine (primary care) doctor regularly, and e-mailed her with what has been going on.  She confirmed that the chemo could have made my pancreas useless as far as insulin goes.  I’ve been resistant to seeing any of the local endocrinologists because of bad experience in the past.  The one I saw seemed to want things to get ‘bad’ on paper before doing anything  proactively.  I don’t work that way.  When I see trends going south, I want to do something to fix it.

What is the rationale behind watching something get to the undesirable stage before doing something?  When someone has a heart attack, does the doctor wait until they need CPR before doing anything? NO !  I don’t want vision problems.  I don’t want to go on dialysis. And I don’t want anything amputated.  I want to minimize my risks by taking care of things before I have other symptoms or complications.

I got an e-mail from my primary doc this morning.  She wants to refer me to an endocrinologist, and told me that we have a Joslin Diabetes Center doc here in town.  The Joslin Diabetes Center is the biggest researcher of diabetes in the world.  I’ve known about them for at least 15 years, and have read some of their older books.  They are ‘da bomb !   I told her I’d be happy to see someone that follows their protocols. No problem.  SO there is hope. There is someone with direct access to the biggest collection of data on diabetes. I can’t ask for more than that.

I’ll be doing even tighter monitoring and recording until I see this new doctor.  I want to have the most amount of information I can to give to him/her at the first appointment.  There’s no point in going in to be told to keep track of things, just to go back again if I can have it to start with.  I have to get this blood sugar business taken care of.  I’m enough of a medical train wreck.  If I can DO something, I want to get after it, and get it done.

Diabetic Inconveniences and Insulin Shots

I’m back to measuring everything I eat.  My blood sugars have been completely out of control since starting chemotherapy in April 2010.  The initial chemo didn’t seem to have the impact that the 50 doses of arsenic, and then the year of tretinoin, methotrexate, and M6 mercaptopurine had.  Those really messed things up.  This morning my ‘fasting’ blood sugar was 161 mg/dl. That is beyond unacceptable, and I’ve been off of all chemo for roughly 11 months.

Before the leukemia my blood sugars were those of someone without diabetes- but that doesn’t mean I wasn’t diabetic.  My diabetes was just in control.  Diabetes doesn’t go away; it gets controlled.  For 12 years I didn’t take any medications at all. I went from an A1C of 10.2 at diagnosis (random blood sugar was 389 mg/dl) to an A1C of 4.7 and fasting blood sugars between 65-85mg/dl about %95 of the time; rarely over 100 in the morning.  Even when my A1Cs started to rise and I started on metformin my numbers were still doing OK- but I saw that they were starting to go up, and asked to do something before they got ‘bad’.  I didn’t want to wait until things were in a higher risk range.  Proactive, not reactive.

The metformin ate my stomach. I couldn’t keep taking it, so I was started on Lantus (long-acting) and NovoLog (rapid acting, for right before eating) insulins.  My numbers went back to where they had been almost immediately.  I could see my risk for blindness, amputations, and dialysis going away. That was my whole point for starting insulin.  Keep the risk for complications as close to nil as possible.  I already have an autonomic nervous system disorder, so didn’t want that getting worse.  And it has since my blood sugars have been out of control.  I don’t know for sure if there’s any correlation (it could ‘just’ be progressing), but I don’t want it to keep going in the wrong direction if there’s something I can do to avoid that.  I need to get my blood sugars back under control.

When I hear people talk about their resistance to starting insulin, I do understand that.  I’d given countless insulin shots (and IV doses) to patients over the years I worked as an RN before becoming disabled.  That helped a lot in knowing how and where to give the shots.  But I didn’t realize how little the needles had gotten. They are tiny !  They are so easy to get used to, and the vast majority of the time I don’t feel the injections at all.  Initially, the Lantus burned some but my numbers were so much better I didn’t care.  Now, the shots don’t hurt at all.  There may be a bit of discomfort for a second or two, but it’s no big deal. 🙂 I’ve had worse fingerstick soreness than I have had with insulin shots.

Anyway, while on chemo, it didn’t matter what I ate or how much insulin I took- nothing helped keep my blood sugars ‘OK’.  I wasn’t supposed to ‘diet’ during active cancer treatment.  I was gaining weight, taking more insulin (which stores fat), and had high blood sugars which makes ones appetite weird.  Hyperglycemia causes increased appetite. I didn’t need that.

Now I’m getting used to the ‘new’ normal.  I’m having to recalculate my insulin-to-carbohydrate ratios.  I had been at a steady 1 unit for every 4 gms of carbs pre-leukemia. Now it’s a crapshoot.  SO back to measuring, weighing, and doing before and after meal blood sugar checks.  It’s annoying, but I’m guessing dialysis, getting used to a leg prosthesis, and learning Braille would be much worse.  I’m also having to tweak my Lantus dose, and am doing a trial of twice daily Lantus.  I’ve got to DO something !

I’ve got a nice digital food scale (measures in grams and ounces), multiple sets of measuring cups, and various measuring spoons. It’s a pain in the butt to have to measure out everything that goes into my mouth.  But it’s necessary.  I’ve got to get things back in check.  Surprisingly, my A1C was under 7 during my annual physical and diabetic lab work in February of this year.  I want it under 6- where non-diabetics live.  The closer to normal I can keep my blood sugars, the greater chance I have at not developing the big complications.  So it’s all a pain in the butt for a very good reason. 

What Do You Mean I’m Diabetic?

As an RN for 10 years in the summer of 1995, I knew the symptoms of diabetes.  I had them all. And I ignored them.  I peed a lot, couldn’t get enough to drink (non-alcoholic, thank you), was losing weight (a good thing), and had times when my vision was so blurred that I couldn’t differentiate the words on a page- it was all just gray blur.  I figured it was just because of a recent diet change (to lose weight), and I’d be fine.  *palm forehead*

I started (or restarted) a job at a community hospital in the Texas Hill Country.  It was their practice to do a urinalysis, drug test,  back x-rays, and have one of the ER docs do a viability check once the offer of employment tentatively had been made (adjusted if anything came back on the back x-rays, or drug test in particular).  I’d worked there before; I knew the drill.  I got a call to go talk to the employee health nurse. That was odd.  I knew Patsy (pseudonym) and she didn’t just call people to her office to chat.  She had something to tell me.

I got to her office, and she was her usual friendly self, but had a look of ‘this is business’ on her face.  She had me sit down across from her desk, and handed me my urinalysis.  She asked me if I saw anything wrong.  It was glaring.  There should be no glucose in urine.  I had a level over 2000.  There was only one logical deduction. I had diabetes.   I just looked up and started bawling.

She told me they’d get me into the diabetic teaching classes; being a nurse taking care of someone was way different than having the disease (boy, she wasn’t kidding).  She’d get me in contact with Charlene (not her real name, either), the in-house diabetic support person (who also taught the classes). And, they’d get me an appointment with a family practice doctor to get this all seen and verified with fasting lab work.  My random fingerstick was 389mg/dl- with no symptoms, and on a basic, ordinary day. Not good.

I saw the doctor, who ordered a fasting blood sugar (240mg/dl) and A1C- 10.2 (should be below 6 for a non-diabetic, and ideally below 7 for a diabetic).  She didn’t want to start insulin until a trial of diet and exercise was done.  She also didn’t want to start any oral diabetic meds.  I was fine with that.  I did well on diet and exercise- and before long had my blood sugars in the normal range for a non-diabetic.

I went to the classes and learned a LOT.  Charlene was a major advocate for diabetics, and knew a lot from having a diabetic son.  She had invaluable information.  She taught the day to day living stuff. As a nurse, I knew the clinical stuff. There’s a huge difference.

I’d been taught the signs and symptoms of low blood sugars, and one of my supervisors would go running for a half of a pimento cheese sandwich if I ever said I felt tired, edgy, shaky, had a headache, or felt my heart racing (never mind I’d be running around all over the hospital floor where I was the charge RN).  She was taking NO chances 🙂

I lost weight to the tune of about 100 pounds total, from the weight loss before being diagnosed, and then by not so healthy ways when I tried to lose weight after being diagnosed (focusing on food and weight loss had been an additional factor in relapsing into eating disorders about 5 months later).   My blood sugars were normal nearly all of the time.

I want to emphasize that this didn’t mean I was no longer diabetic.  I was in control of the diabetes.  There’s a huge difference.  I still had to monitor my blood sugars (though not as often), and let doctors know I was diabetic if I had to have any medical testing done.  I couldn’t go back to my pre-diagnosis state, and just ignore that it was there.  I did have episodic lows, which isn’t that common, but can happen in type IIs not on medication.

It took 12  years before I needed to start medication. That pill made my stomach a mess.  I started insulin later in 2007 ( a few months after the cruddy pill) , and that was the best thing ever for my blood sugar control.  It was some work initially to figure out the dosage of the long-acting ‘basal’ insulin (Lantus for me), and the rapid acting (NovoLog) for before meals.  I had to do a lot of testing before and after meals to get the right ratio down, and I found that the more tightly I calculated my carbohydrates, the more flexibility I actually had.  Things were going well until I was diagnosed with leukemia, and have had bizarre blood sugars on, and now off,  chemo.  I’m still working on getting it back to a reasonable level.  It gets frustrating.

I’m a stickler for numbers. When I saw my AIC going up prior to starting insulin, I wanted something done. I didn’t want to wait until it got into the ‘bad’ range.  I saw no reason not to  be proactive, and waiting around for bad numbers made me mad.  The endocrinologist I saw was dragging her feet so I talked to my Coumadin nurse (a nurse practitioner) who had no problem starting me on Lantus.  My numbers almost immediately got better.  I had to be my own advocate.  The fired endocrinologist wasn’t doing anything productive.

I also learned that having diabetes is so different than taking care of patients with diabetes as a nurse.  There is no connection.  Those sliding scale doses of insulin are useless unless they are very specific for the specific patient’s numbers. If I didn’t tell the doctors and nurses  I have my ratios figured out, I would have gotten some ridiculously low dose when in the hospital.  I had to speak up.  I also know what foods make my blood sugars weird- they’re different for each person.  I know to have proteins and/or fat with carbs to level things out. Some emergency room folks don’t have a clue about that when treating lows.  There was a lot to learn, and in the process I learned to look at each diabetic person I took care of as what they were- an individual.

Now, just to get things back to normal after chemo…that was a game changer.

Diabetes After Chemo

I woke up this morning with a blood sugar of 205mg/dl.  Very NOT OK.  Before chemo it was between 65-85 mg/dl nearly every day, and rarely over 100 mg/dl (where it’s still tolerable).  After getting off of all chemo, it’s been around 140; sometimes lower.  I don’t know what’s going on this morning.

Ever since being on chemo, my blood sugar control has been totally nuts. There has been no control, but oddly, my A1C in February was 6.7, or around there. I was amazed. I expected it to be over 7 for sure. Usually it’s well below 6.  I’ve had great control, with a fair amount of effort.  My body is still figuring out it’s new normal since the leukemia.  The blood sugars (and need for more insulin) don’t help the weight loss issue.  Insulin stores fat. I need to lose the forty pounds I gained while on chemo.

I have to admit, my carb counting has been ‘fair’.  I know the carb counts of most things, and do look at labels, but I’m not doing the extensive counting that I did before. I need to get back to doing that.   I don’t want to go blind, lose a leg, or have kidney failure.  Nope.  Don’t want those on top of what’s already wrong with me; I’d end up in assisted living before I’m 50 years old.

I took the usual amount of NovoLog insulin this morning, and added a bit because of the psycho fasting blood sugar.  Now (2 hours later), my blood sugar is 135mg/dl.  I’m glad it’s going down, but not sure I’d planned for it to drop that fast.  It still needs to get considerably lower before it’s a problem.  I’ll be sticking my fingers a lot today.  It’s sort of a ‘sick day’, except I can’t figure out what is ‘sick’…

Chemo changed a lot of what had been controlled: my weight, my blood sugars, and my insulin dose.  I’ve been off of chemo for nearly a year (11 months).  I’m going to have to go back to the rigid counting and figure out the new insulin:carb ratios.  My I:C ratios had been so steady before.   It’s been nearly 2 1/2 years since the initial diagnosis.  I have to remember my ‘old normal’ way of dealing with the diabetes, and apply it again to this ‘new normal’… which isn’t normal at all.  It’s a lot like starting from square one.

My physical situation is such that sitting exercises are all I can do.  If I walk more than the distances inside my apartment, I have to use a walker. Or shopping cart.  My balance gets iffy. So exercising is a problem.  I’d love to walk around the neighborhood on cooler days.   That IS my ‘old normal’ and ‘usual decrepit’ – LOL.  That is back to ‘normal’, which hasn’t been ‘normal’ for a long time.  I’d torn my left ACL and meniscus (mildly) the summer before the leukemia diagnosis, and because of beginning to feel lousy (thinking I was just being a slug) I postponed the knee replacement that was recommended.  When those big ball players roll around whimpering or screaming on the field after their knees go out, they aren’t being weenies- that HURTS. I’d been using a walker in my apartment up until the morning I was admitted to the hospital when I was diagnosed with leukemia.  Being physically limited is nothing new.  Anyway, I’d like to exercise more, but it isn’t generally safe.

So, I’ve got to buckle down and get these blood sugars under control.   I’ve got to lose weight. And I’ve got to get it done without triggering old eating disorder habits.  Sometimes it seems overwhelming.  Sigh.  But I’ve got to do something.