The Only Place I Can Write This…

….and not freak a bunch of people out.    This is the second Christmas without dad, whose family was the  core of all things Christmas when I was growing up.   Even until the Christmas before he died, those who were still around  got together to do the Swedish Christmas Eve party with a lot of traditions soaked into a few hours one night each year.  The music, food, memories- they were all part of something more than any one of us.  They were the bits and pieces of each family member who had been at any of those wonderful Christmas parties.   And now, everybody is either dead, lives somewhere else, or has more dependable people to spend the night with (and I completely understand that- I’m NOT reliable when it comes to showing up for gatherings, with the medical issues and equipment I need to lug along with me if I do go somewhere).   Christmas feels like it’s  over.  Of course, I know that the true meaning of Christmas will never be ‘over’… but everything visible that  I associate with Christmas is gone.  It makes the other pain more intense…    I did have a very nice invitation to go to a friend’s home for a Christmas brunch, which I so appreciate… but I’m just not in a mood to be around humans today.

I got mad at my older dog earlier today, and screamed at her.   My dad bought her for me after my previous dog died of heart failure at age 11 1/2.   Shelby (older dog) is my baby- my pride and joy, and best gift ever from my dad.   She was visibly upset at me being mad at her, since it’s not something she’s used to.  The little dog, Shiloh,  ( 5 1/2 months old) went and lied down on her ‘cube’ bed.  I just went and sat down, and started sobbing and repeating “I’m SO sorry”.    Shelby came over and got on my lap and didn’t seem any worse for the wear, but I feel terrible.   It’s never either of their ‘fault’ that I’m having a bad day.   I can’t take it out on them.  They mean too much, and are my only constant companions.    I feel like I’m sometimes no good for them, though I’d do anything to make their lives as good as is humanly possible to do.   My days revolve around feeding them, changing the pee pads, having them on my lap, etc.

When I feel like this, my thoughts get very dark.  I wonder why I’m still alive, and what possible purpose I could have being a disabled RN whose only hope is riding on being approved for medical marijuana.   Me.  A former detox RN in a drug/alcohol treatment center… HOPING that I can get some pain relief from MMJ.   The fibromyalgia has gotten worse, and add to that diabetic neuropathy pain and bone-on-bone knee pain (that can’t be fixed because of my history of pulmonary emboli… they call knee replacements “elective” surgery, and “pain won’t kill you”), and I don’t know what I’m going to do if I can’t get some relief soon.     Pain may not kill me physiologically, but it certainly could be the factor that decides when I’ve had enough of being alive, and make a very desperate decision to opt out.   I have opiates.  They don’t do much.   I’ve been through physical therapy, TENS units, chiropractors, steroid injections, etc.  I can’t take Aleve or Motrin because of my kidney function.   So, yeah… pain can kill.

I need to be very clear.  I am not suicidal.  I do not want to die.  I just wonder how I’m going to manage living when there is no relief from my body hurting.  Any contact with furniture, or sometimes even clothing, is miserable.   I’m relying on the hope that medical marijuana offers.  So many people are getting help from a simple little plant.   I know that I need  not to  pin all of my hopes on using weed for medication- but right now, it’s the only thing I haven’t tried.     I focus on how much I love the two dogs- and how much they depend on me.   That is huge.    I need to have very concrete reasons to get up each day and know that two little beings depend on me for everything in their lives.   They are my only immediate family.   I have biological and adoptive family all over the place, and I’m very thankful for them.  But the dogs are the only beings with me every day.

I know this is scattered.   My life is scattered.  My body is scattered.  And I need some peace and hope that feels like it’s never going to come.   Applying for the MMJ card was a last resort.   I just want to feel enough relief to make the thought of being alive in 10 years sound like something positive.   I really am grateful for a lot.  This post doesn’t sound like it, but I am.  I know that I have a lot to be thankful for… I’m just so ready for my body to be part of that.

Shelby and Shiloh
Christmas 2017

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It’s Been A Bad Few Months…

I’m so frustrated with the increase in limitations over the last few months, especially with my grandma not doing well (and wanting to see her).  I haven’t said a lot recently, but it’s not because things are better.  More things are falling apart.  My aunt called this morning to offer to come and get me to go see grandma (about 50 miles round-trip), and I can’t do it.  I hate this.  I really want to see her.  I had a cousin offer as well (and an uncle volunteered my aunt)- so several offers.  I feel SO badly for declining.  But it’s just not physically safe at this time.  😦

It kind of started with the reflux/GERD getting really bad.  I have had an endoscopy and barium swallow.  Those showed chronic gastritis and some esophageal spasms.  I still have two tests I need to get done (gastric emptying and pressure of esophageal spasms), but haven’t been able to because my spine/back and leg pain being too bad to get through the tests.  I had one test a few days ago (EMG) that showed peripheral sensory neuropathy, that is progressive.   What that means is that my limbs (mostly legs at this point) are subject to strange pain and sensations, or lack of sensation.  At some time, this will lead to not feeling my feet on the floor when walking.   That’s a safety issue.  I also drop a lot of stuff, and have more trouble opening jars, even when ‘unlocking’ the vacuum with an old fashioned bottle opener.  I’m sending for one of those gimp things for opening jars soon.

The pain in my legs has been a burning pain unlike anything I’ve ever felt.  Fortunately, it’s not constant, and mostly at night (which makes sleeping unpleasant, if not impossible). I wake up frequently to that ‘what IS that?’ until I can fully become aware that it’s the neuropathy pain.  Now, both feet are beginning to burn at night, though not every night.  It seems like it’s progressing fairly quickly.  My neurologist did the EMG (pins into legs with electricity run through them, to measure muscle and nerve responses; sounds bad- isn’t that big of a deal).  The MRI was horrifically painful, which normally isn’t the case.  I couldn’t finish the “with” contrast part, as the “without” contrast part took about 1.5 hours, and by the end of that, I was in tears.  I joke around during bone marrow biopsies- so I’m not a wimp. I was just in too much pain this time around.

Over the last several months, I’ve been having more trouble with my blood pressure and heart rate.  The first time I was really aware of my BP being low was at an oncology follow-up appointment when it was 80/50.  I’d been really tired- but I’m  disabled with autonomic dysfunction- I’m tired a lot anyway.  BUT, at that visit, my kidney  function was moderately impaired (at the levels it was at, it would have been considered Stage 3 out of 5, of chronic kidney disease).  Thankfully, with some additional fluids, I was able to get it to the vague acceptable range (normal levels are 90-100; the standard lab values only measure >60, or the specific numbers if <60).  I’d prefer to know the actual number no matter what they are.  Even 60 is stage 2.   But anyway, I dodged a bullet with that.

At that same oncology appointment, I noticed that my A1C had gone up, so got myself off to my endocrinologist to have my insulin adjusted.  With my 2016 Medicare part D drug plan, I will be able to get the “good” insulin, instead of the half-assed stuff I’ve been able to afford over the past 3 years.  Insulin is ridiculously expensive- yet until next year, Medicare has been more wiling to pay for dialysis, amputations, blindness, heart attacks, and strokes before making good, up-to-date insulin a realistic possibility.

My blood pressure meds, which paradoxically maintain my blood pressure (or are supposed to) have been adjusted three times since this summer.  I’ve noticed some orthostatic intolerance on several occasions, but once the meds were adjusted, things would get better for a while.  But it seems that no matter what the dose,  after a couple of weeks, I get symptomatic again.  When driving to my dad’s friend’s house for dinner one night, I started getting lightheaded; that is a bad situation in the car.  I got home OK, but it shook me up. I’m being referred to a cardiologist/electrophysiologist for ANOTHER work-up on this.   I’ve looked up the name of the guy I’m being referred to- and he’s a specialist in heart rhythm and orthostatic issues… perfect for what is (and has been) going on.

I need to see my pain doc, now that there are some answers as to what type of pain is going on.   All pain isn’t  equal.  What is going on is more neuropathic pain, as well as the pain from degenerating discs in my spine (neck to tail).  I’m not sure what is going to be done about that. I don’t like the spine injections.  They aren’t painful, but just don’t last all that long.  I’m not a big fan of being on “routine” pain meds, either (instead of just “as needed”), but I may have to suck it up and just take them.

So, there’s my internal med doc (primary doc), gastroenterologist, oncologist (just follow-up at this point), endocrinologist, neurologist, pain doc, and cardiologist (to come).  Seven doctors in about four months.  I loathe adding doctors to an already complicated mess, but at least until things stabilize, I just have to see them.  Fortunately, my pulmonologist (sleep apnea), plastic surgeon (scalp cysts), and dermatologist (psoriasis) get a break for now.

But the timing on any of this is horrible.  My grandma is dying (as in actively).  I want to see her, and don’t feel it’s safe to go 25 miles each way to see her.  It’s not because I don’t want to.  She was my best friend during those early years on disability when I knew nobody here (and had no access to Facebook or other online social connections and reconnections).  We’d talk about so many things and laugh about stuff in the past.  We’d also reminisce about my mom (who died in 2003).  She’s almost 101 years old, and has been the glue holding our family together.  All get-togethers and gatherings centered around her.   I have called her care-taker who tells her I called, and that I love her.   I know she knows that I do, but it’s still hard not to be able to go down and hold her hand one last time.

Does It Ever End?

I’m sure the dysautonomics out there will totally ‘get’ this.   Even as an RN for 30 years (the last 11 on disability, but I keep my license active to deal with myself !), I’m constantly learning about things I never bothered with much before.  It all ‘worked’, so no need to pay attention to some stuff.  Like the low blood pressure issues.  I’ve pretty much lived by the motto that if it doesn’t cause symptoms, don’t focus on it.  Well, that’s not a good philosophy.    I found out that my blood pressure had been low enough for long enough to decrease blood flow through my kidneys, leaving abnormal renal function tests.   I’d had a few ‘foggy’ episodes that correlate with hypotension, but I’ve got dysautonomia !  I always have some vital sign parameter that is off kilter.   Anyway, some medication changes have helped, which is a huge relief.  Dialysis has always been something I would seriously have to consider if I did it or not… and if not, that means life would be short.  If I could do the nighttime dialysis at home, I’d do that.  But going out three days a week, every week, indefinitely…. uh, no.   Especially when it’s 20 below zero windchill.  Fortunately, the last set of tests were better- so a definite scare, but not a disaster.

For the last few months, I’ve also had horrific right thing burning pain at night.  I only lasted through the “without” contrast MRI (lying on my back ‘in the tube’ had me in tears…. I’ve joked during bone marrow biopsies.  The MRI pain was worse; I’ve had many MRIs in the past, and they are no big deal… I left this one in tears).  The burning comes and goes- so it’s not like it’s every night, which is good.  My right thigh is also visibly ‘shrinking’.  So, with the pain and atrophy, I’m scheduled for another EMG in a few weeks.  It scares me that I won’t be fully ambulatory for as long as I’d hoped for…  I’ve been walking more, the further out from chemo I get.  I hope it’s enough to keep me vertical and independent.

I’ve also been having some GI tests done because my GERD/reflux has been bad.   The endoscopy just showed chronic gastritis, so nothing that’s going to kill me.  That’s good 🙂   I’m postponing two tests at this point until the leg thing gets taken care of, since the gastric emptying test requires me to be on my back for FOUR HOURS.   Not likely to happen at this point.  Nausea is pretty much a routine symptom.   I’m not sure that swallowing the manometry thingie would work all that well.  I also need a break from some of this stuff.

In the middle of all of this, my dog needed to have a toe amputated.   It has been about a  5 week ordeal, with trying antibiotics in case the swelling was an infection, then the surgery and sutures in for two weeks.  Now, she’s getting back to normal, and will go for a much-needed haircut at a good salon this week. The toe issues started (maybe coincidence ) after going to a chain store groomer. They lied on the ‘report’ that the nails had been done… they had not.  I have little tolerance for lying.   Anyway, she’s going to be OK.

I haven’t written a lot lately.  I’m tired.

Brain Dump… or Just Getting Weird

OK, for those who know me, the ‘getting weird’ part might be nothing newsworthy.  I go through times when I’m skating along fairly well with the medical stuff, and then something happens, which freaks me out because of the cancer history and neurological issues, and I get in a funk.  I’ve been having trouble swallowing consistently, and have finally asked for a referral to the ENT (should hear about an appointment time soon).  Raw carrots and medications get stuck regularly, and things like rice or dry chicken are sometimes downright scary.   I guess I’ll find out about that when I finally get to the appointment.

The continued atrophying of my thigh muscles is still an issue.  I do what I can to stretch, walk around the apartment, take out the trash, and do my own grocery shopping (very painful).  The days after my monthly grocery store trip are generally miserable- but I’m also not good at taking the pain meds.   I try to make them last, and since hydrocodone is now a Schedule II (and requires a paper prescription for each refill- no faxing from the pharmacy), it’s inconvenient and painful to go get them. But, I’m going to have to give up and just go get them.  My doc can give me two refills per trip- just all dated for different months – so have to be filled at spaced intervals.  And, I have to take them.  I’m meticulous with other meds- but the pain meds hit me the wrong way- like I just need to buck up and get a grip.  That doesn’t work well when I’m lightheaded from the pain.

My blood pressure is also shifting (going low), so that is a problem.  I’m adjusting the meds for that.   I’m requiring less insulin, which is good- but sort of trial and error as I readjust the dose.  None of these things are any big deal… but sometimes the pile-up of several things is exhausting.  I’ve also lost a little weight (about 25 pounds from highest chemo weight; 14 since March 1st )- so that’s good, but still trying to shed more.  But I bailed out of Nutrisystem.  It was getting too focused on numbers, and my history doesn’t bode well with compulsive number calculations.  I get back into thinking about how much easier it is to lose weight when I’m NOT following some relatively rigid rules.  I think it’s a good program, but NOT for someone with a history of eating disorders.  I could feel those old patterns swinging from the rafters of my brain.

Then I look at the world at large, and the horrible things people do to each other.  I’m not going to go into specifics, since I’ll just get upset.   When I see tragedy on TV, I just want to reach through the screen and wrap my arms around those who are suffering.  SO, I pick and choose what I watch anymore. Tonight I had the weather on, as we were having severe storms again, and more tornadoes hit the area.  We had an EF-4 come through on April 9th that really tore up one whole town, and heavily damaged another subdivision.  Tonight, a 6,200 ‘lot’ camping ground was hit.  They’re still looking for people as I write this.  The other towns hit in April haven’t got their lives back together, and now some folks 10-12 miles away are looking for their lives, that are scattered around the neighborhood.  As of now, they know of 5 who are injured, and trapped  by flood waters.  But they haven’t accounted for everyone yet.

The shooting in South Carolina was an abhorrent act- and the congregation of that church are amazing examples of how NOT to hate back.  Truly inspirational people, and all before a week has gone by since nine of their friends and family were mowed down.

My brain is tired.  My limited ability to DO anything to help is so frustrating  (I can’t be outside in this weather because of the heat intolerance).    And yet, I have SO MUCH to be thankful for- and I do realize that.  I’m very blessed in so many ways.    Today, I got something I’d wanted to try for a while – Mexican street tacos- they were outstanding, and a real treat since I don’t leave home more than 2-3 times a month for groceries and MD appointments.  This did make me happy today 🙂  They were so good.

Street Tacos with steak, pork, and beef tongue (which was like pot roast)

Street Tacos with steak, pork, and beef tongue (which was like pot roast)

Sometimes, I just need to blow off steam 🙂