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

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

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

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

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

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

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

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

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

Crazy Few Months…

I’m tired.  The last few months have been fairly miserable.  I’ve been on Nutrisystem since the latter part of May of this year.  That was all going well with more than 30 pounds lost and kept off even through the crazy stuff.  Then, sometime in late July (I think) I started having daily headaches with nausea. So it was hard to keep up with the eating like I should.  I gained back a few pounds (nothing disastrous), and just tried to get through the days.  Of course, with a history of cancer, horrible things come to mind when anything is different, so I felt I needed to get things checked out… one doc at a time. I had up-coming appointments (regular follow-up stuff) with most of my docs- so other than rescheduling one of them, I was already going to be seen.  It took me a while to get the energy to even get to the doctors’ offices, and timing the appointments in the afternoon, so if I woke up with the headaches and nausea I had some time to take something and get it better ‘enough’ to get to their offices.

The oncologist saw the muscle wasting in my thighs, and felt it was more of a ‘job’ for my neurologist.  He sent off another vial of blood for the genetic testing that detects changes in my DNA that would be consistent with a relapse of acute promyelocytic leukemia.  I haven’t gotten any calls saying it turned out badly, so that’s good.  He reminded me that chemo is hard on the peripheral nervous system, and since I already have dysautonomia, it could hit it harder. But, he still wasn’t the best  specialist to handle that.  I appreciate a doctor who knows when to turf someone to someone else 🙂

So, in the meantime, I had to see my endocrinologist.  Since being on Nutrisystem, my cholesterol is now normal, my AIC is %5.5 (from %5.8- I’ve had pretty good numbers since I was diagnosed in 1995- %10.2 then; the worst it got on chemo was %6.8- which is not acceptable to me, even though some diabetic references aim for under %7). My kidneys look good, and while my triglycerides are still high, they’re down by 100 !   That appointment went well.  A couple of weeks later, I found out that I was in the Medicare Part D (prescription coverage) ‘donut hole’ where there is no coverage until out of pocket reaches another dollar number.  I have a part D plan that covers many generics in the donut hole, but insulin is considered a ‘biological’ medication, so the patent never wears out, and there is no generic.  Walmart has partnered up with a big insulin company and offers the ‘older’ types of insulin for $25 per vial… that’s down from over $200 per vial for Lantus (and even NPH if not from Walmart and their ‘deal’).  Today, I’m switching over to NPH- so I’m watching my blood sugar more closely.  I had steroid injections yesterday (more on that later), so my blood sugar has been predictably higher. I’m a little nervous about the switching since NPH has an onset, peak, and duration that are much different than Lantus (which essentially stays at a steady level).  There’s more risk of hypoglycemia- so I have to eat (not great with nausea).  Anyway, I’m thankful for the Walmart insulin… I can’t afford the $300/month co-pay (the insulin companies offer a break in the donut hole- but it’s still more than I can afford).  Medicare is expensive !!

On to the neurologist.  She asked me a bunch of questions, saw my thighs (I wore shorts- partly because of the heat intolerance and mostly because I wanted her to see the difference).  She decided I needed an EMG test (electromyelogram).  It’s a test that sounds horrible, but wasn’t any big deal.  First she put prong thingies over various nerves  and zapped a little electricity in them to see what reaction showed up on the screen (and how my foot/leg twitched !!).  Then she put  thin needles in my muscles and applied pressure, then none, to see what that reaction was on the screen. It wasn’t a bad test at all.  Neuropathy is the diagnosis.  No big surprise there. She thinks it’s from the diabetes (and chemo making the neuropathy I already had worse), and that even with good numbers for YEARS in the diabetes department, it’s still possible to have damage.  Bummer.  I thought that’s why I was being careful with my blood sugars. 😦   She also ordered some lab work which got drawn yesterday, and I’ll return to see her in a couple of weeks to go over that.  I know I don’t have syphilis (ha !! 😀 ), and my thyroid has always tested OK.  I’m not sure about my sed rate (inflammation marker), B-12, or serum protein electrophoresis numbers.  She’s just being thorough… OK.  On to the next one.

I saw my pain guy yesterday after a horrible weekend of left shoulder and trapezius muscle pain (trap is between the shoulder and neck).  It was almost ER-worthy, but going to the ER when you have chronic pain AND a pain management doctor is never a good thing. You automatically get categorized as a ‘drug seeker’ and your credibility as a human being in general hits the toilet and swirls there.  So I stuck it out, taking the over the counter and prescription stuff I’ve got, as well as using Salonpas patches (like BenGay or Theragesic on tape), Absorbine Jr, and trying to stretch sore muscles out. Because of the dysautonomia, I can’t use heat packs. As it was, the pain was causing a lot of autonomic symptoms (severe flushing mostly on my left cheek, major heat issues- the outdoor temp was in the 40s (F) and I had the air conditioner on- and general ‘yuck’ feeling).  SO I punted.  It’s the pits to know if I went for help I’d be ridiculed and discounted.  It’s sad to not be able to get help because there are people who do nothing but beg for medications for their addiction, not for legitimate pain.  It’s hard to be lumped into the same category as those folks, when those judging don’t know me.

When I called on Monday to get the appointment, I was told the earliest was next week… I asked to be put on the cancellation list, and what do you know… I got a call 10 minutes later saying I could get in yesterday (Tuesday).  One o’clock p.m.   I’d be there come hell or high water (we had snow forecast, but that wasn’t a problem- and never materialized).

I got to the appointment a bit early to fill out the little person diagram showing where I was hurting and telling how much the pain had been helped since the last time I’d been there.  The last time, I got injections in my left jaw (TMJ- which could have been ‘helping’ the left neck and shoulder pain) and lower back epidural.  They helped.  The neck injections have never helped me, but those two did.  I wanted that again !

I also told him that the ‘as needed’ Norco 10/325 wasn’t doing anything (never really had), the Ultram was only marginally helpful (better than nothing), and I was ready to cry uncle and go back on the methadone.  I’ve been terrified of that stuff ever since watching people detox from it when I worked drug and alcohol rehab.  It is hands down THE worst med to detox from (this is from an objective view- I’m sure people coming off of other stuff thought theirs was bad enough !). But, it’s also a very ‘legit’ pain med, and has the perk of not having much of the ‘high’ feeling sought after by addicts.  Even though I’ve never had a drug abuse problem, I’m uber-careful with narcotics.  He ordered the methadone to be taken regularly instead of ‘as needed’ to get the maximum benefit- and it’s a relatively low dose, so I’m not as spazzed out as I was a few months ago, even thinking about methadone.  I need some relief.  It’s time to suck it up and use the bigger guns.  The other option was the fentanyl patch- which is probably in my future (I’ve been on them before).  There’s room to fiddle with the methadone dose (when instructed to) to get the best results, so I’m OK with taking it- and I know I’ve gotten ‘off’ of it before with no horrible symptoms, by tapering it.  I have to have some time when the pain isn’t there ALL the time, regardless of activity (or lack of activity) level.

I also got some low dose sumatriptan (active ingredient in Imitrex) to use with Aleve (naproxen sodium) and ‘make’ a sort of version of Treximet- which isn’t covered on the prescription thingie… I’d had samples of the Treximet before for the headaches, and it did have a noticeable impact on the pain, though it made me tired- when it gets to the point of needing meds, tired isn’t a bad trade-off.  I can still use the Ultram for breakthrough pain.

Then on to the injections, done by flouroscopy, or ‘moving’ x-ray.  The jaw injection does hurt enough to call it pain (and leaves a bump for a few hours until the meds are absorbed), but it has a lasting benefit, so it’s worth it to me.  The one in my lower spine doesn’t really hurt going in- there’s  a bit of a sting with the local anesthetic, but then it’s just a bit of pressure.  The steroids do have an impact on blood sugar (not the greatest timing when switching to a new insulin, but I had to get some relief).  I was glad to have them done.  The lumbar epidural will also help with the physical therapy exercises (more on that … NOW !).

That gave me just enough time to get to the physical therapy appointment (I was at the pain guy’s place for 2 1/2 hours ! ).  Now I’m rarely away from home for more than the time it takes to grocery shop.  I had the ice vest on (since the weather is cooling off, people turn on their heaters- so no break with the seasons), which helped, but it was starting to have a more ‘neutral’ feel to it.  The physical therapist was very pleasant and showed me exercises to do at HOME !   I told her that I’m horrible with appointments because of the headaches, nausea, and pain.  I can do stuff at home.  I also told her about the dysautonomia, and how heat, pain, and heart rate elevations can lead to me passing out cold.  Neither of us want that.  So, she showed me the exercises and gave me written instructions and a band thingie to tie around my knees for one of the exercises.   She also told me how to rig similar straps and things to squeeze between my knees, but I got home and ordered the same stuff she used from Amazon.  They weren’t that expensive, and I can see having to use them for a while…

I had to go to the pharmacy to get the prescriptions filled (one is not something that can be called or faxed).  While that was going on, I got some apples and Pecorino Romano cheese, and a couple of other things. I got home 4+ hours after leaving home.  I was exhausted.  But, glad to have it all ‘done’.

Today, I’m back to eating the Nutrisystem food  as it’s supposed to be eaten.  During the months of nausea, I was eating NS food when I could, but mostly not eating enough.  I had more carbs than I had been since they are often bland enough to tolerate.  My stomach has been ‘enough’ better to go back to meals.  I also got my nausea meds changed, and that has helped.  The stuff I’ve used for years just isn’t cutting it any longer.

So, that’s the last few months in a nutshell.  It helps that I’ve been an RN for 28 years. Keeping myself running, even on disability, is a job in itself.

Shelby (puppy) is doing well, and I was contacted this week by a dog treat company about using her photos in a video of still photos of various ‘fans’ of their product, so I’m excited about that!

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

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

 

Shelby !  Future 'movie' star :D

Shelby ! Future ‘movie’ star 😀

Growing up !

Growing up !