The Lull in Posts Over the Past Year

It’s certainly not for lack of material.  Or being too busy (well, having a new puppy has been interesting over this last 11+ months).  In many ways, it’s because I have too much rattling around in my brain, and trying to figure out what to write about (in a coherent fashion) has been more of a problem.

The last year has been wild.  In January of 2013, I was grieving the loss of my beloved Mandy- the miniature schnauzer I’d had since the summer of 2001.  She was my heart, my life, and my only consistent companion.  I knew the day would come, but it’s never easy.   I was really alone for a couple of months, and it hurt.  As in ‘boohoo’ type crying on and off for weeks.

Mandy Bluebonnet Tumbleweed Mar. 28, 2001- Dec. 27, 2012 This was her last photo… ever.

Mandy Bluebonnet Tumbleweed
Mar. 28, 2001- Dec. 27, 2012
This was her last photo… ever.

Then, I got my new miniature schnauzer puppy at the end of February.  She was a day short of 9 weeks old when I brought her home.  She wouldn’t get near me in her crate on the car seat until about 2 hours into the 2.5 hour drive home from where she was born (longest drive I’ve made in over 10 years, and my left knee still hurts).  Then she scooted to the wire door, and at least was close enough to see… she was so cute !  And the games began !!  She was  a crazy little thing, after being seen as the ‘shy, reserved little girl’ in the litter of three pups, two of which were males.   She got over that in a hurry !!  Just NUTS !!  But not a mean bone in her- she was just active, and always on the go.  It took quite a while for her to listen to my commands- which wasn’t about ‘dominating’ her, but making sure she was safe.  I had to get a shock collar, which broke my heart- but the little zap (about the same as when you rub your socks together on the carpet and touch someone, or something) was enough to catch her attention.  Now, I just have to ask her if she needs her collar. 😮

Shelby in one  of her toy bins :)  About 9 weeks old.

Shelby in one of her toy bins 🙂 About 9 weeks old.

Just a happy puppy kind of day !   Shelby- 4 months.  Silly girl !!

Just a happy puppy kind of day ! Shelby- 4 months.
Silly girl !!

Growing up !  About 10 months old in this photo…

Growing up ! About 9 months old in this photo…

Now, she is still active, and very much a young dog, but is such a sweetheart, and really understands a lot of what I tell her.  “Stay” needs some work, but otherwise, she knows the difference between the types of her toys, different rooms, and when she is NOT supposed to bark or whine at someone outside – I mean seriously, the mailman doesn’t require daily announcing !

My biological mom visited a couple of times, and it’s always great to see her 🙂   I’ve thought more and more about ‘biological bonds’ and how that never is severed by adoption- if anything it’s more intense.  Having my biological mom in my life has been such an amazing gift.  That’s something for a few blog posts.  My biological paternal uncle also visited- the first time I’ve met someone from my biological dad’s side of the family.  That was great !   I honestly enjoy both of them (as well as others I’ve met through my biological family tree- that is more like a group of trees).  Neat, really nice people.

This summer, my cousin was diagnosed with cancer.  It’s a tough kind of cancer, and she hasn’t  ever been really sick before, which makes all of the procedures, sensations, and inability to just do what she sets her mind out to do that much more difficult.   She has had so many side effects and complications- it’s been so hard for her (as it would be for anybody).  Since I’m the family ‘go-to’ for deciphering medical information, we talked and e-mailed a lot.  We still do.  I’m glad to be of some use to her (and other family members who know I’ve been an RN for nearly 29 years, even if I’m now disabled- which has increased my knowledge about a  lot of the little things with my own personal medical journey- it helps me find some ‘good’ in the bad I’ve been through).  She is SO strong mentally, and has such an amazing support system with friends and co-workers.  I told her how in awe I am, since the people around here (co-workers) dropped me like a hot rock when I had to leave work in 2004.  She is blessed with an employer who still sees what she can do, and co-workers who are really there for her.  It’s amazing how well she’s doing in such a truly lousy situation.

Last (early) summer, I started on a weight-loss plan, and did lose 35 pounds that have stayed off- but I had to stop the Nutrisystem products for the artificial sweeteners.  I had about 3 solid months of migraines… no days off. I might have some time during the day when my head didn’t hurt, but there were no days with no head pain (I’m never free of muscle pain, and that’s been for the last 19 years).  SO, I had to give in and start taking daily pain meds along with some ‘as needed’ migraine meds.  I’ve been avoiding regularly scheduled pain meds for years.  But, my quality of life is going down the tubes.  With the pain meds, I’m now able to do more around the apartment in short spurts, which has been good- though I’m in no way able to do ‘normal’ amounts of housework.

The dysautonomia is also getting considerably worse- so any activity has become incredibly painful and leads to problems with my heat intolerance, blood pressure and heart rate.  The chemo I was on for leukemia from early 2010 through the latter parts of 2011  is known to cause peripheral neuropathy (as are many types of chemo)- so with an already existent neuropathy, it makes sense that it doesn’t do it any favors.  The heat intolerance is much worse, and even though the ice vest helps considerably, I have the air conditioner on when it’s  less than 20 degrees outside because I’m over-heated inside, if I do any sort of activity that causes my internal thermostat to go whacky.  It’s miserable.

My thighs have begun to shrink.  As in visibly smaller, and not in the good way from weight loss, but in an abnormal way.  SO I had to have an EMG (electromyelogram).  That showed more neuropathy.  I was sent to physical therapy (PT) for exercises- which will be an ongoing thing to avoid ending up needing a walker (at best) or wheelchair (at worst) for just getting around my apartment.  That is scary.  Since last spring (or maybe before then- the time gets away from me), a childhood friend of mine has been volunteering to help me get my apartment straightened out and drag stuff off to the thrift store at one of the churches here.  That has been SUCH incredible help.  She will also go to the grocery store if I need something picked up, and we’ve made a sort of contingency plan if I can’t do much at the store  at all, where I ride the scooter and she pushes a cart.  My guess is that we’d spend a fair amount of time laughing with that arrangement, but it’s so nice to know she’s around.   Another junior/senior high school friend has also moved back to this area recently, and has also offered to help out – so I really do feel blessed to have two people (and my dad) who I trust, that are willing to help me out.   There are days when I feel like that’s the only way I’m going to be able to live outside of some type of facility- and having no longterm care insurance, I would have to go to some state run ‘pit’.

Last week, I went to the store for my monthly fresh food/dairy stuff.  I had my ice vest on, and when I got home, I was still in trouble.  I had to drag out my ‘arsenal’ of thigh squeezes, leaning over the counter, etc. to keep from passing out.  I am so thankful for days when nothing is so bad as to need some sort of quick ‘first aid’ maneuvers to stay conscious.  Or headaches that are bad enough to land me in bed.  Or muscle pain that causes me to be essentially immobile.   I’m getting more and more thankful for days that other people would consider to be very boring- but keep me from having to contact one of my doctors.

The first week and a half of January is rough every year because of two very painful anniversaries… the January 7, 1978 murders of my figure skating coach’s six children (by her husband)- and wondering how she has been all of these years. I miss her, even now.   And, the January 10, 1987  six-hour rape I went through by the uncle of a baby I took care of up to six days a week for about 6 months (back when 6 months of my life was a much bigger portion of my overall existence).

I’m not sure anybody ever ‘gets over’ things like either of those.  While I wasn’t physically hurt by the murders, it was one of the most traumatic things I’ve ever been through, and at age 14, I was miserably unprepared for how to ‘get through’ something so horrific. I knew the older girl a bit from the rink- which made it all hit so much closer to home.  She was a year younger than I was… and it was all so impossible to understand.  I was 23 at the time of the rape- and while I managed to keep myself alive, it was also something beyond my level of coping skills emotionally.  There isn’t a year that has gone by, or even a day or week since either of those events that I haven’t thought about the overall impact they have had in my life- and wondering how my skating coach has been.  Every few years, I have to deal with parole protest letters for the guy who raped me.  I’ve written other blogs about both of those.

So, I’ve had plenty to write about.  But sometimes, it’s just too much to try and put thought to writing.  Many things are rattling around in my thick skull… and writing about them does help me.  I feel ‘heard’ – even if the majority of things I write about won’t be seen by people I know- it still helps that ‘someone’ out there will have seen what I have to say.   Thank you for stopping by to ‘hear’ me.

*Ann, if you are out there… please comment.  I see a lot of people who look up information about that day.  If you are one of them – or know how she is… please let me know 🙂

 

 

I’m Grumpy Today

I’m not sure what my malfunction is, but I’m sorta grumpy.  I got up way earlier than usual (I’m one of those who is usually up half of the night and then sleeps until noon).  I’ve got a vague headache, but that’s nothing all that new. I have chronic headaches.  Christmas was really good- I got to see (and meet) family, and talked to my biological mom and half-brother on the phone, which is always good.  I got to spend time with family at the Swedish Christmas party since I’ve got the ice vest to wear when I leave home and don’t have as much chance of being overheated because of the dysautonomia. And yet, I’m a major dud this morning.

My 11.75 year old schnauzer with heart failure was so eager to eat some ‘meatloaf’ I made for her yesterday (with controlled sodium), and this morning she won’t touch it. I’m running out of options.  She started refusing the prescription dog food weeks ago, and prior to that had been eating a minimal amount (which wasn’t all that unusual for her- but she managed to keep her weight up). So now I’m trying to figure out other ideas… have been through ground beef/turkey/chicken, oatmeal, mashed potatoes, brown rice, white rice, baby food veggies, cooked carrots (gag), baby food applesauce and oatmeal,  and various combinations of the above.  She normally likes all of those things. Now, I’m lucky if she eats some of her Charlee Bear dog treats- they have minimal sodium, so she can still have them.  If she weren’t still alert and very interested in what is going on, as well as physically mobile and showing no signs of pain, I’d have her put to sleep…but I don’t want to ‘kill’ my best friend if she’s still getting some enjoyment out of life.  It’s a fine line right now, so as long as it’s not blatantly obvious, I’m holding out… but that time is coming.  There’s only so much I can do, and I think I’ve pretty much hit my limits. 😦

I’ve been extremely irritated at comments to news stories on various online sites and publications. So many people are so heartless and cruel.  Or pathologically immature and even psychopathic.  Responding that they’re ‘happy’ about an article where five people were made homeless by a fire that destroyed their home? How do people get that way?  Who dropped them on their head?  Or burned them?  And then there are the other ‘less’ disturbing posts that are just plain nasty and/or cruel.  Or ignorant.  I’m actually very thankful I don’t know those people or have to spend any IRL time with them.  A click of the back button takes them out of my life.

The onslaught of horrible stories that are on the news constantly is also a major bummer. I feel really badly for those folks and what they’re going through, but what good does it do anybody to have it dissected in the media for days to weeks on end?  I’ve been a crime survivor of a high profile case (before the 24/7 media, back in 1987).  It wasn’t helpful to see it on TV for days or see the newspaper coverage over and over.  The people who knew about it, and were my actual friends/family already knew what happened, and face it: most people really don’t want to know about real life horrors that happen to other people.  Or they don’t know what to do with the information, at least to the persons’ face. Behind their back, the chatter won’t stop. If people would have just asked me straight out what happened, or even if I wanted to talk about it would have been much  more helpful than days of media coverage  (without any input from me- I was an object).  I had one ‘different’ neighbor that responded to meeting me with “I never thought I’d meet you ! ”  Really?  Meeting someone who has been raped and beaten was a life goal?  Step away from the strange one !

I’m extremely disgusted with my weight, and have my food diary set up to start on January first. I don’t want to look like this on my 50th birthday next November.  I don’t want to be grotesque and repulsive going into the last third to half of my life. I have to restrict food. I’ve tried the ‘normal’ calorie amounts I’ve been given from the doctor and diabetic dietician, and that doesn’t work…so I’ve got to go lower. I can’t do much exercise because of the issue with passing out when my heart rate goes up or I get overheated, and my knees and spine issues.  So the calories have to go.  A slippery slope for me, so I’ve got to be careful- but I have to DO something beyond what I’ve been doing.  I didn’t look like this before chemo… and I want to lose any remnants of those days.

Losing weight will also save me some time before having to have my left knee replaced (I had the right one done in late 2006, and it was a very unpleasant experience with some complications and ‘dull’ response time by the doc and nurses to a bladder infection). I had to go to a rehab place for the medically defective. It was a good rehab facility- great care, but set up where people stayed in their rooms like a hospital between therapies (no common area), and since I was infective, I was in a private room- not a horrible thing, but friggin’ isolated. It’s not like there was a big risk of someone coming into contact with my pee.   My left knee has unrepaired, and questionably healed ACL and medial meniscus tears, done when I turned over in bed back in 2009- about a week before my closest friend from here in this town died suddenly (following several complications from a KNEE replacement). She’d moved to a different state to be closer to one of her daughters, but we were in contact by phone daily, even when she was in the hospital or rehab.  I was supposed to have the left knee replacement done, but then got leukemia and everything was put on hold to survive that.  Been a weird few years.

I’m frustrated that I don’t feel that people understand why I’m like I am.  I’ve got diagnoses that people haven’t heard of.  I ‘look’ like I’m capable of working, and I miss being a nurse SO much- but too much standing or walking, and the whole heat/heart rate thing = one unconscious middle-aged RN.  I’ve been an RN for nearly 28 years.  I’ve been on disability for 8 years.  But I still keep my license, because I still AM an RN.  I worked hard for that thing.  And I loved working with it…  And those days are done.  When people ask me what I’m doing to get back to work, it hurts- there isn’t anything that can be done by me or anyone else. Some things CAN’T BE FIXED !  SO those perky, blessed-to-be-clueless people need to shut up and go target someone who has some stuff going on that is treatable. I’ve been dealing with much of this since 1996- and worked until 2004- I held out as long as I could.  I fought to keep working.  QUIT asking me if I’m going back to work. NO, I can’t !

I was raised in an evangelical church, and am a born again Christian, without some of the judgmental drama that can go with those two things.  I hate the passive ‘I’ll pray for you’ stuff- prayer is wonderful, and I do it often, but if someone wants to help, some action would be really amazing ! Prayer is about as passive as a person can get and rationalize to themselves that they’re ‘doing’ something– and while I do believe in prayer and that it is a very positive and powerful thing (and pray for people on the news all of the time since I can’t do anything else), it’s not the be-all end-all answer to really being of use to someone.  It’s definitely better than nothing, but it really doesn’t show much in terms of actively supporting and helping someone. Sometimes it’s all people CAN do- and that’s appreciated.  But remember the ‘faith without works is dead’?  I’ve sensed a lot of dead.  I wish I could do more for others, and feel guilty about that.  Not like I know many people around here to be available for… back in the home where my heart is, I could be more useful, even if I’m not that physically ‘able’… I could drive someone to the store, or appointments.  I could water plants when they were gone, or change out cat litter. I couldn’t walk dogs or watch kids… but I’d do what I could.

I’ve contacted my ‘old’ church (from when I grew up and it was an amazingly positive experience) to find out about women’s Bible studies and other things in the past, and have been essentially blown off. I guess I’m not good enough for the ‘elite’ evangelicals anymore. My checkbook may not be deep enough or something.  I’ve tried again, and will hear back after the 31st when the contact person returns. I had really looked forward to going back there when I moved back from Texas.  I found it to be cold and a bit pretentious.  If someone can’t go back to the church they grew up in, where should they go?  Where is the ‘real’ message in that?   It hurt.  There were some really nice ladies (who I’ve known since I was a kid) who invited me to a type of ‘grief’ group, but I don’t want to sit and talk about dead family.  If that works for them, I’m really glad they have somewhere that feels right for their grieving process.  My mom is dead. Sitting in a room with folks who need that type of support doesn’t work for me.  I guess if I want to connect with anybody there, I have to be bummed out.  Not something I’m interested in.  I’m hoping the Bible study that starts on January 9th will work out- otherwise, I’m done trying to get back in to the church I grew up in. It shouldn’t be a ‘project’ just to find somewhere to fit in there.  The singles group wasn’t my bag – I want some ‘study’ group type thing.  🙂

Anyway, that’s a bit of what’s rattling through my head today.  I’m a little less grumpy now.

The New Oncologist

I saw the new oncologist yesterday. I was a bit nervous, but that ended up being wasted energy. The new guy is young, and the cancer center he’s associated with is pleasant. I told him that I’d been quite satisfied with the care the other guy gave regarding the cancer, but I was having a lot of trouble with how he handled my weight. About half of each appointment was spent telling me “you have to lose weight” over and over. I’m not stupid or blind… I know that I’m overweight, in a way that haunts me daily.  I told the last guy that I was working with my regular doctor (whose JOB it is to help with that -NOT his) and also an endocrinologist, since my blood sugars and insulin requirements went nuts during chemo.  There are so many things that were affected by the chemo, as well as weight gain, and now he gets very dismissive when I refer to the weight gain as being from the chemo. I didn’t weigh this much before chemo… during chemo when I complained about the weight gain, HE said it was the chemo- but not now?

The new guy understands about how the autonomic dysfunction (dysautonomia) fits into ‘exercise’. If I get my heart rate up, there’s a good chance I’ll lose consciousness. If I get overheated from exercise, there’s a good chance I’ll pass out as well. If the fibromyalgia or disc/joint pain gets booted up a notch from repetitive muscle/joint movement, the pain will trigger the dysautonomia. I can do some simple stretching, and if I  walk anywhere, I have to have my rolling walker (or a shopping cart), ice vest, cell phone, and blood pressure cuff.  I would love nothing more than to be able to take off and go walking, preferably with my camera, like I used to, and enjoy being outside. Unfortunately, that’s not safe.  Being unconscious is to be incredibly vulnerable to the not so nice people in the world.

The new oncologist said the only thing he really gets after patients about is smoking. I quit 5.5 years ago when I had the pulmonary emboli (multiple blood clots in all three lobes of my right lung, with enough ‘volume’ to push into my heart, causing the symptoms of a heart attack).  I smoked two cigarettes before driving myself to the emergency room … do not try that at home !  That was that. Cold turkey.  I’m lucky to be alive from so many things.  Anyway, the new doc told me that one day he’d lost three patients from smoking-related cancers…he was angry.  He hated what their smoking had done. On the way home, he’d stopped to get something to eat, and saw five guys smoking in the parking lot. He went over to them, and gave each one of those guys one of his business cards!  I like a doctor with cajones.

The new guy understands what a history of eating disorders can do to efforts to lose weight. It can’t be some crazy crash diet, or things can go south fast. I’m not sure I’d survive another relapse, regardless of my weight.  Eating disorders aren’t about weight, and the symptoms can be very severe in someone who looks like they could shed some serious pounds. Been there, done that. I don’t want to go back to that place.

The new guy has overweight sisters, and he’s been overweight himself. He understands that weight loss requires more activity than what I’m able to do right now.  He understands that I’m stuck between a rock and a hard place, figuring out the balance of calorie reduction, activity, and avoiding the other medical stuff I have to consider.  He didn’t make my weight a source of shame and humiliation. He saw more of the ‘whole’ me, and didn’t focus on something that I’m not there to have treated by him.

I signed consents so the new guy can get information about my cancer treatment from the other guy.  The other guy has no clue I’m not coming back, and I’m not sure how to handle that.  I am very thankful that he knew the current treatment for acute myelocytic leukemia, subtype M3.  I’m very thankful I’m still alive (again).  I also believe that the other guy’s reasons for badgering me about my weight are because of health risks- I get that.  But the way he did it, and the way he didn’t let up after I told him I was seeing other doctors for that (and wanting him to back off and stick to what I was seeing him about), or have any clue about how eating disorders fit into my history made seeing him a nightmare.  I dreaded appointments.  I refused to be weighed, and he still kept on for about half of each appointment telling me I needed to lose weight. The one time he backed off is when I started crying- THEN it became all about him, and how I “couldn’t be depressed” (I was frustrated- big difference) since HE had worked so hard to keep me alive when I was “dead sick”.  I had to be OK for him?  I don’t think so.  I’m very thankful to be alive, and I know his knowledge did that. But my obligation to him lies in my payment source. He’s getting paid. I don’t work for him or his need to feel good about how I’m doing.  That might sound cold- but normally I don’t have to make the distinction about who gets the care during an appointment.

I’m not sure about how to handle any contact from the other guy’s office, or him, when they get the requests for my medical information.  I don’t dislike the guy. I think he’s a good doctor. I think there may be some cultural influences in how he’s been talking to me, and also the seeming unawareness of my total situation.  I didn’t start out ‘normal’ when I was diagnosed with leukemia. I was already disabled. I have a history that he never was part of.  I don’t feel he really ‘got’ what I have to balance- and that wasn’t a big problem when I was lying in a hospital bed for six weeks.  The activity, temperature, and pain issues were minimal, so not something he had to deal with.  But I’m still stuck with those whether he ‘gets it’ or not- and I’ve got to take care of myself.  So, when/if I’m contacted by his office or him directly, I don’t know how to give him any more reasons than I already have. I’ve told him over and over again that the weight is something I’m painfully aware of, and am seeking help in dealing with…what more is there to say?  I don’t want to be nasty.

The new guy is someone I can work with.  He understands his role in my cancer follow-up care, and gets it that I am aware of my entire health history, and current medical issues. He understands that I’m an RN, and have that knowledge as well as my own ‘experience’ with living with myself, and managing the disorders I have.  He understands weight issues, and doesn’t use shame or demeaning comments. He’s also kinda cute!  He’s got a sense of humor. He was willing to do a different type of heart function test (a 2-D echocardiogram, instead of a MUGA scan- which isn’t a ‘bad’ test, but lying on a metal table for an hour is painful- if that had been the only option, I would have complied without question).

Even after just one appointment, I felt like more of a part of my own health care team.  The new guy talked about prognosis (very good), what can happen (and what can be done- also not horrible news), and expanded on more than just the here and now.  At one point, that’s all I needed to know- but now, during the longterm follow-up, I do need to know the big picture. The other guy was very good at telling me the ‘now’ stuff, and was spot on when things happened.  Maybe it’s not just my body that grew, but maybe I just outgrew that other doctor and his way of doing things.  Anyway, I’ve begun a new chapter.  I don’t feel judged or belittled at the new place, and that’s a good place to start. 🙂

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.

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.