Feeling Deformed… and Being Needed

I just got back from the endocrinologist’s appointment… they always weigh me there. I already know the number will be horrible before I walk in the door. I know it every time I look in the mirror, or remember the rings I can’t wear anymore, or wonder why I look like an orangutan (my chin has more than doubled).  I detest what I see when I look at myself, so I avoid it whenever I can.  But, bless the doc’s heart- she didn’t rag me about it.  My diabetes numbers are very good, my blood pressure was 98/60, and my blood sugar records were more likely to be on the low side than too high- so it’s not about too many carbohydrates.  And, I’ve stayed within 3-4 pounds for a  year.  But I’m not happy.  Not by a long shot. I look horrible.

I know that as a Child of God, I’m supposed to look at that to determine my self-worth.  I know that He has everything under control, and that He has some reason for this.  I’ve tried so many ways to lose weight, and it just won’t move. I’m afraid to get too radical, since I have a history of some pretty significant starvation and eating disorders. I don’t want to go back there.  SO, how am I supposed to learn to accept myself like this?   I’m unacceptable !  I don’t know what He can do with me like this to be of use to Him.  But I have to trust that He’s got it figured out.

My oncologist told me to just be thankful that I’m alive; many people with acute promyelocytic leukemia don’t make it… I know of two people by name who didn’t even know they were sick  until a day or two before they died from brain bleeds. One was 29 years old, the other was an 11 year old kid.  They both shook me up more than a little.  I was pretty sick in the hospital for six weeks… and initially I lost weight on the induction chemo. Then came the consolidation (arsenic), and maintenance (M6-mercaptopurine, methotrexate, and tretinoin)… 19 months total.  I blew up by 50 pounds from the lowest post-induction chemo weight (30 pounds from before the cancer diagnosis). It’s humiliating.  YES, I’m very thankful to be alive, but I feel like I’ve failed at getting my body into better condition.

My mobility is limited because of degenerative disc and joint disease, bone spurs, and fibromyalgia. My activity tolerance is limited by dysautonomia.  I’ve tried sitting exercising, and my heart rate gets to the point of making me dizzy and pre-syncopal.  I can’t get in a heated pool, or the heat will trigger my blood pressure to nosedive.  I’d slink under the surface of the water, and drown. Not helpful.  I can do some isometric stuff- but that hardly melts off the fat.

But I am thankful for a lot. I love my new puppy, and she needs me to be here for her.  She’s someone who notices if I’m around or not, and wants me close to her. I need that. I don’t get any sort of personal satisfaction from being a nurse anymore… I miss that a lot. I loved working, and am thankful that I had the years I did.  I am very thankful for the stuff I’ve survived.  I want to be here.  I’d rather hate my body than have it parked in a marble orchard somewhere (that’s what my dad calls cemeteries).  I enjoy many things (mostly on TV, or online).  I’m thankful that one day, I’m promised to have a new body in heaven.   I’ve requested a size six. 🙂  It’s just hard for now.

My puppy doesn’t care if I’m a size &^%&# or a size zero.  She just wants me here. When I call her name, she wags her tail as if I’d just given her the best prize in the world.  To her, I’m enough.  I’m hers.  I guess maybe I’ll just have to start there, and have that be enough ❤

Gotta Lose This Weight

I’ve carried on about my frustrations with my weight gain following chemotherapy for leukemia (APL).  It’s no secret that I’ve got a history of eating disorders (just about all of them).  I’ve got to admit, I’m nervous about doing much restricting, as I don’t want to trigger that hell of anorexia again. I was told the last time around (1996) that I probably wouldn’t live through another relapse. As it is, some of my medical diagnoses weren’t identified until after that last relapse, and they’ve disabled me.

But I’m getting desperate.  I’ve got some diet journals to start using on January first… I’m not much into New Year’s Resolutions, but I do want to have this weight gone by my 50th birthday in November.  I hope I can lose the weight without losing my mind.  I have severe intolerance to heart rate or heat increases, so exercising isn’t really an option that will be of any major benefit.  I can stretch. That’s about it.   If the dysautonomia wasn’t an issue, the disc and joint disease is.  Sounds like excuses… it’s my life. I used to walk like a maniac, and loved it. I’d love it again if I could take my MP3 and hit the sidewalks.  No dice. I’d end up laid out on the side of the road.

So, I’ve got to cut back on calories considerably.  I have to be diligent. But I can’t go crazy with it.  I really just want to be more healthy- not ‘skinny’.  I don’t know how this is going to work.  But I’ve got to do something.

Letter to My Oncologist

First of all, I can never express enough gratitude and appreciation for what you did to treat the leukemia I was diagnosed with in 2010.  I’m thankful to God for your skills and incredible knowledge that helped to save my life.  Your awareness of the latest treatments for acute promyelocytic leukemia is wonderful .  I’ll always be thankful for that.  I often wish I had the chance to find out more about Iran from you. I’m sure you could tell me things that I’d never know from a book or documentary.  Because of you, I’m more interested in TV shows that focus on Iran, as I have respect for you and your skill as an oncologist; I want to know more about where you’re from. 

But I feel so misunderstood by you when it comes to losing the weight I gained during chemo.  Every single appointment revolves around my weight, and I’m really sick of it.  I’ve told you about my history with eating disorders, and while I’m aware that you don’t specialize in them, you must be aware of the nature of EDs.  The only time you backed off was when I was in tears trying to explain that I KNOW I need to lose weight. Nobody beats me up more than I do over my weight.  It is painful to hear it from someone who doesn’t know me aside from the leukemia.

Did you have to openly chastise me in front of the med student?  Up until then YOU had said that the weight gain was a side effect of the chemo. When I said ‘chemo weight’ and you told me “don’t you blame the weight on the chemo” when the med student was there, it was confusing and shaming. Was that for the med student’s benefit?

When you thought I was depressed, as in clinically depressed, you backed off. I’m FRUSTRATED.  You backed off that day when you saw I was upset.  But yesterday, when I had no outward signs of being bummed out, you started in again. I’m not going to keep showing up to hear about my weight  from a doctor who doesn’t deal with weight issues.  Not gonna happen. You deal with the cancer. Period.

You suggested I go to the YWCA to swim. Do you understand that heated pools trigger the dysautonomia?  I wear an ice vest to appointments, and that didn’t occur to you?  Well, I guess that’s understandable since you don’t treat dysautonomia.  You don’t know enough about me to know that I can’t walk unsupported for very far. I do OK in my apartment, but if I go to the store, I need the cart for support.  I was using a walker IN my apartment up until the day I was admitted to the hospital for that first admission when the leukemia was diagnosed. I had a partially torn ACL and medial meniscus in my left knee; you didn’t know that. It never got fixed, and I’m not sure how well it healed since it still hurts now and then. I was supposed to get a knee replacement done.

You asked about specific high calorie snack foods yesterday.  Do you have any idea how long it’s been since I had chips, cookies, cake, or candy in my apartment?  No?  I don’t either.  I don’t buy them.  The biggest treats I have are freeze dried apple slices that pack in a whopping 38 calories per bag.  Oh, that’s right- you told me to quit eating fruit.  Really?  Unsweetened fruit is a very basic food.  It’s on the diabetic meal plan I have that was set up by a registered dietician. I’m sure she got more nutrition education than physicians do (or her job wouldn’t exist). I’ve read about the basic nutrition classes that US med schools require. I’m not convinced that Iranian med schools demand much more with instructions to not eat unsweetened fruit.

I don’t need anybody to tell me I need to lose weight. Do you think I’m blind, or stupid? Or maybe you just think I don’t care and sit around eating bon bons all day. How insulting.  There hasn’t been a day in over 35 years when I haven’t considered my weight.  Are you even 35 years old?   I was badgered by my mom about my weight from the time I was six years old.  Then I took over, and equated my weight with my self worth for decades. It has been something that has haunted me for years, and I’ve worked hard to keep from letting it destroy my life. I don’t need (OR WANT) you to keep harping on me about my weight.  I know it needs to come off.

I’ve been an RN for 27 years, and a diabetic for 17 years. I know how being overweight is hard on a body.  I get it !  I’ve seen my regular doctor about it, and will see an endocrinologist next week. My blood sugars were never the same after chemo.  Is that my fault also?  I know that insulin is a problem when someone gains weight, and insulin stores fat.  I can’t not take it.  You don’t realize that I was 40 pounds lighter when I started on insulin; I wasn’t ‘fat’… somewhat overweight, but more than 100 pounds less than my highest weight. You don’t know about that, because you don’t do anything but tell me to lose weight over and over and over again.  You don’t know my whole medical history, or the daily struggles because of being disabled (I do pretty damn well, considering). You see fat and cancer.  Well, I’m in remission; maybe it’s time to have someone else follow me until the five year mark when I’m considered cancer free.  Someone else can do the yearly bone marrow biopsies.

Do you get after your obese staff members in the oncology office like you do patients?  Is that why nurses no longer go over the medication lists with me when I first get there, and why I found 16 errors on my list when I went over it today? Did the nurses leave?  Or are there techs in place of nurses now to save money?  I know that isn’t something you can control, but look around.  Don’t talk to me like I’m the fattest person you’ve ever seen.  I’ve been in your office and in the hospital enough to know that isn’t true.

I feel like less of a person every day because of my weight.  I know that’s not right, but it’s the truth. You aren’t helping that. You only let up one time (when I was in tears) because YOU had done so much to keep me alive and didn’t want me to be depressed.  It’s not about you.  I appreciate what you DID.  But what you’re doing is damaging.  I hate coming to appointments, and will continue to refuse being weighed at your office if I keep coming at all.  You did a great job with the leukemia while I was still being treated, but now, it feels a whole lot more like harassment.  Continuing to tell me repeatedly that I need to lose weight is so counterproductive I can’t even explain it.  It drives home even deeper that my weight is more important than anything else.  That is a great way to trigger something I never want to go through again. And something you really don’t know much about in my history.

I have to make a decision about whether or not I’m coming back.  I know my primary doctor can refer me to another oncologist.  I don’t want to keep seeing you three times a year just to be lectured about the obvious in a way that is demeaning and shameful.  Thank you for the incredible job dealing with the leukemia. But get back when it comes to the continued lectures about my weight.  I’m not going to do it.  When appointments are more of a sense of dread than they are productive, it’s time to hit the road.

Update: My primary doc is sending a referral request to another oncologist 🙂

I’ve Discovered Sparkle.Com for Weight Issues !

Sounds like a way to get windows clean… but lo and behold, it’s a way to get healthy !

I was reading a random article about weight loss (again) and stumbled across Sparkle.com. It’s a site devoted to healthy weight and eating, with menu plans (that can be adjusted to taste), medical issues (like diabetes and cancer, among many others), and tracking tools, so I don’t have to keep writing everything down all the time.  I’m stoked. There are also communities and message boards for support.  The lady in the article lost over 200 pounds!

This could be used for anybody with eating issues- and is based on height, weight, and goals.  I like that it’s based on healthy eating- not some quick diet and be done. It’s about lifestyle change, and incorporates limitations (i.e. my exercise goal for now is stretching, not running a marathon).  There is some sort of point system, that I’m not all that familiar with since I’ve been doing this for about 45 minutes 😀   But I have gotten points already. I just have no clue what they’re good for.

I’m thinking this could be something really good, and it’s FREE (first criteria for any weight loss support on my disability income).   When I get myself more organized (shouldn’t take long, as I’m doing my grocery list now) I’ll be able to get the right things at the supermarket, and not just throw healthy stuff into the cart, and hope a meal shows up out of the mess.  I do buy healthy stuff; I’m just not good at making meals.  But with this, it’s showing me options, and letting me make exchanges within the proper food groups to keep all things balanced.   The options include meal plans for the culinarily challenged.  I can cook, and do a decent job of it, but it’s just gotten too painful. This will allow me to still follow a healthy meal plan with minimal prep required.

For the undereaters out there, this is a very concrete way to see what is ‘enough’ or ‘too much’.  It’s based on health- not emotions 🙂  There are snacks incorporated, even for weight loss, so the snacks aren’t just for those needing to get back UP to a healthy weight… I don’t like snacks either, and I’ve got a weight loss goal (ultimately) of 60 pounds.  One pound at a time.  No matter which way any of us needs to move.  (And for you bingers, you know that the best way to avoid bingeing is to not starve…. really, you know!).

I’ll be eager to see how this all works out.  Instead of having to dream up some sort of meal, I can fire up the laptop and see what is on the list for whatever particular meal- and make substitutions as needed (but not mess up the nutritional values), and get after it.  Then I just check off the boxes, and at the end of the day, it tells me how I did.  You can add stuff if you do go off the deep end, but honesty is the big part, so just add it in, and do better the next day 🙂

This could be a very good thing !

EDIT:  There is a community on Sparkle.com for those with all ranges of eating disorders- and ways to get support with weight gain or loss. 🙂

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.