Turning 50… and Already On Medicare For Six Years

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

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

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

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

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

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

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

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

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

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

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

Dieting With An Eating Disorder History

When I started Nutrisystem 80 days ago, I had some nagging concerns about how to lose the weight I’d gained on chemo without going nuts and ending up in a bonafide eating disorder relapse.  I’m not sure that concern ever goes away.  I haven’t done any purposeful eating disorder behaviors since 1996-1997 (it was a process), and no purging since March 1996.  Yet, there were so many years of my life, starting at a young age, when disordered eating was the only way I knew how to eat at all.  It was what I was taught.

I’ve lost 43 pounds in 80 days. That’s faster than the advertised 1-2 pounds/week on the Nutrisystem literature (and any healthy weight loss plan). I’m not purposely eating less than I’m supposed to- and when I tally the calories, fat, carbs, fiber, and protein (which is more for diabetic/insulin reasons),  I’m not compelled to cut back to crazy low numbers.  There have been days when I don’t eat all I’m supposed to, but it’s because of headaches and the accompanying queasiness.  I think some of that is because of the sucralose/Splenda in some of the Nutrisystem products (they don’t use aspartame/Equal)- so this week I called Customer Service, and was able to arrange to send back all of  the Cinnamon Buns and some of the Honey Wheat Bagels (had to do with the 30-day exchange policy).  They are sending me some Granola Cereal- no artificial sweeteners, low fat, and good protein (for granola).  I really liked those Cinnamon Buns. 😦  But, I’ve had a headache every day since I started eating those with the last order. It has been a constant 6 day headache.  I’m still not sure why bagels need an artificial sweetener.  Sure, the yeast needs honey or sugar, but adding sweetness just to make them sweeter?  Yuck.  They did still work with the salmon spread I came up with, but I’ll just have to find a store bagel that has good fiber and protein.  But I digress.

I still have the body image issues. When I look in the mirror, I don’t see 43 missing pounds. I know my clothing fits differently (or in the case of 3 pairs of shorts, just falls off).  I know the ‘numbers’ say I’m losing weight, but I don’t ‘feel’ it.  My ‘old’ pajama bottoms fit again. My t-shirts fit better. My bra doesn’t make me look like the Michelin Man.  But, I’m still waiting for my rings to fit again.  And I’m waiting to see the change in my appearance.  I took ‘before’ photos, so I will have something to compare myself to.  I hope I can see it.

I’m not sure how to see myself normally.  That part of the recovery puzzle never did work itself out.  My dad asked me how much I plan to lose, and I don’t know. I told him I’d know when I got there (which can be a scary thing to think about- those with eating disorders are never happy when they reach one goal). I have a BMI number I want to get under, but it’s not anywhere near unhealthy thinness.  When I was in the worst part of any given eating disorder period, I thought that the low 70s was a perfectly reasonable weight to aim for, at 5 feet 6 inches tall.  I do know that anything below a BMI of 18 isn’t good- and for my body type, I don’t want to go below a BMI that is much higher than that. I know I have to be careful not to keep looking for some ‘magic’ number- and that I have to be vigilant about not getting into numbers games in my head.

To look at me now, ‘eating disorders’ (the ‘thin’ ones)  are not what someone on the outside would even consider being a issue of mine , but I’ve been nearly 100 pounds heavier than I am now, and 70 pounds lighter during my adult life (18 or older). Between the relapses with anorexia, I’ve also been a compulsive undereater- people don’t talk about that. It’s not quite as bad as the internal demands of anorexia,  but the focus on food and weight is still abnormal enough to affect functioning around food and eating; social events with food are very difficult, even though the diagnostic criteria for anorexia aren’t all there.

I ate a lot when I first moved away from home in 1985, and no longer had the imposed restriction of my mom, or the original ‘diagnosed’ anorexia onset in 1981.  I’d been through inpatient psych hospitalization, and was ‘allowed’ to eat.  That led to unhealthy eating, and what I don’t really call bingeing, but more like finally being set free from a noose of thinness obsession.  My metabolism had to be messed up from so many years of dieting and starvation, which just made the weight pile on faster. “Normal” intake equaled weight gain.  I got morbidly obese- which is like a death nell for someone who has been anorexic/bulimic.  I relapsed a couple of times before the last one in 1995. Each time got worse faster.  The last one was really bad. But only those who saw what I was doing knew that I was in trouble.  To most people, I was too overweight to even consider that I was starving.  I lost 50 pounds in 3 months, and a total of 120 in about a year.  Some of that was from diabetes before it was diagnosed (weight loss is a symptom of undiagnosed high blood sugars), and then after the diagnosis I became very obsessed.

Now, I’ve lost 43 pounds in 80 days.  I  let my doctor know (that’s definitely not something I would have done during the ED years).  I know that the huge reduction in insulin is probably also a factor in how ‘easy’ this has been (when nothing I did before Nutrisystem helped budge the chemotherapy weight).  I am eating more protein than before NS.  The glycemic index of the food is much better.  Even the ‘junk food’ on NS is formulated to be healthy.  The Cheese Puffs, cookies, pretzels, and candy bars are tasty enough to order after I reach my goal weight.  It’s hard to find 8 gms of protein and 6 gms of fiber in 1 ounce of regular pretzels.

I still have a problem with feeling full. I loathe that feeling.  There is a lot to eat on NS.  Most days, I don’t get it all in, but it’s not about the numbers game- it’s about feeling really uncomfortable.  Gas-X has become its own food group.  On ‘headache days’ (whether from sucralose or not- I have chronic headaches), it’s hard to pack in every meal.  But on days when I don’t have the headaches or other pain, I like the NS food.  NS food is quite good for ‘diet food’.  I go off plan now and then and have restaurant food (and it hasn’t affected my weight loss). Some people on NS (per the discussion boards) must stay very rigid so they don’t end up in long binge cycles- kind of like alcoholics can’t have a drop of booze.  I understand that from my years of working drug/alcohol rehab, but I have to be less obsessive, and go ‘off grid’ now and then to keep some sort of balance with the real world.

One of my other reasons for wanting to lose weight (besides the chemo weight) is that I’ll be 50 years old later this year.  I didn’t want to hit that milestone at such an unhealthy weight.  I want to stack the odds in my favor for the ‘senior years’ (geez, I’ll get my AARP card soon- when did THAT happen?) 😮 . I plan to eat restaurant food on my 50th birthday in November, and I can pretty well guarantee there won’t be a carrot on the plate 😀  And I will have cake.  I don’t normally enjoy restaurants (mostly from the heat intolerance and dysautonomia), but I’ve been told the sky is the limit by my dad, since a 50th birthday doesn’t come around but once.  I don’t feel like I’m almost 50… no husband, kids, etc- I guess I bypassed some of the other milestones in life, and have a different frame of reference for a lot of things.  But, I don’t want to be fat when I turn 50.

So, I’m doing well on Nutrisystem, but I don’t think I’ll ever feel like a ‘normal’ eater.  I think that the risk of anorexia is always there once it’s ever taken hold.  It takes over very subtly at first, and then everything crashes and burns.  Being aware of this has been helpful.  The ultimate goal of being healthy has surpassed the desire to be ‘skinny’.  That part of my brain has finally grown up.  But the part of my brain that remembers the horrible years of torment from anorexia, bulimia, and other variations of those doesn’t want to get ‘close enough’ to the edge.  Ever. It has scarred me in many respects.  I guess that’s probably good.  Now to get rid of the rest of this unhealthy weight, and then maintain it like a ‘normal’ person.  I’m more than half-way to my random goal, set when I started NS  (I had to put something down) but people adjust them once they reach their original goals all the time.  I’ll just have to see what feels right.