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.

Advertisements

Need to Write More…Puppy-Motherhood is Tiring !

There’s something about just getting stuff out of my head, whether or not anybody reads it, but knowing that somebody somewhere is probably going to actually know what is going on in my little corner of the world makes my life seem so much less isolated.  I’ve been busy with my puppy…or should I say she’s been busy with me.  This one is a corker.  I’ve had four miniature schnauzers now, and this one has been the most challenging.  She’s very smart, very fast, and has a mind of her own. She also wags her tail at literally everything, so discipline is a crap shoot since she thinks everything is fun.   There is no association between me telling her ‘no’ and what I’m telling her ‘no’ about.  It’s just fun !  For her.  The only thing that she doesn’t like is the crate with a blanket over it. If she can’t see me, she is NOT amused.  Within a few minutes the crying starts.

Don’t get me wrong, I love her like crazy.  She’s got this look of perpetual happiness on her face. My dad says that in 20 years, when she’s been dead and gone for a few years, her tail will still wag.  After Mandy’s illness and being so ‘on guard’ the last month she was alive, it’s nice to have the upbeat energy around here. It’s also nice to be needed.  I miss being a working nurse, and somebody noticing  whether or not I am around and worth something.  Shelby needs me for her food and water, and clean pee pads. She also needs to be loved, and for me to interact with her and let her know that it matters that SHE is around. But she wears my butt out !   Some days I swear I need a net to round her up.  She has that puppy run of tucking her butt under, slicking her ears back, and just going for broke.  And she can stop on a dime. I’ve fallen once trying to avoid tripping over her.

She’s already learned quite a bit- fetch, ‘let go’ (when she doesn’t drop the fetched toy), “get on your chair”, “go potty” (she will go on command if she has to pee- or sit down and look at me if she doesn’t ), “sit”, “down”, “are you hungry?”, “do you want an ice cube?” (she loves ice on her teething-weary gums), and if I holler loudly enough, “NO!”.  She’s not really too good at “stay”.  She will come to her name being called, but sometimes it’s a ‘fly-by’ if she’s wound up and wants to play.  If there are dogs barking or cats meowing on TV, she stops what she’s doing and looks at them. If the bark sounds somewhat menacing, she joins in… it’s funny, but I’m trying to get her to know when barking is not OK (i.e. the neighbor taking out the trash…  I don’t need an alert for that).

She has little fear. She will jump from my arms, off of chairs, over toys, and off of my bed.  She’s growing, but she’s still not that big – I’m guessing about 13 pounds. We go to the vet tomorrow for the last Parvo shot, so she’ll get weighed then.  At least once during the day, she starts running like her butt is on fire, racing around tables, past chairs, down the hall, and sometimes over me (via a quick stop on my lap).  I haven’t done enough leash work with her because of the weather and my activity intolerance, but from what we have done, she’s not amused.  Though she did walk nicely on the leash last time we went to the vet for other puppy shots.

In the morning, she wakes up about 8:00 – 9:00 a.m. and wants to eat (she’s getting a gravity feeder tomorrow). I usually don’t go to bed until 2:00 – 4:00 a.m. (worked nights for a long time), and give her a puppy health biscuit before bed so she isn’t having to go too long without something in her tummy.   I get up and give her the 100gm scoop (heaping 1/3 cup) for her breakfast, and then go back to bed. She will putz around for a while, go poo, and then come back to bed with me. She likes to snuggle against my legs or back, and really is a cuddle bug when she slows down.  She seems to sense that I need to sleep and is really good about our routine.  She is very good about using her stairs to get up on the bed, and has her own bed and blankets up there, but prefers to snuggle.  She also brings toys to bed sometimes (as long as they aren’t the squeaky ones, they’re OK  🙂 ).

When I finally start moving around and she knows I’m awake, she gets SO excited. It’s so nice to be ‘wanted’ every day, and to have ‘someone’ show me that she’s glad I’m there for her.  Usually there is a fair amount of slurping on whatever part of me she can get to, and that tail literally wags too fast to actually see.  Boat motor speed.  And she’s so happy. It’s nice to start the awake part of my day with that.  Shelby can’t stand when I’m in the shower. I have to leave the shower curtain open about 8 inches so she can peek in to make sure I haven’t left her. I talk to her the whole time I’m in there, and it’s a transparent plastic curtain (but it’s green with turtles on it), so it’s not like I’m behind a concrete bunker, but to her I may as well be.

Sometimes she comes over to the recliner where I’m sitting and when I reach down to pet her, she flings herself over on her back, spread eagle, and waits for the belly rubs to commence. She has no shame. If I sit up, but reach down again, she throws herself down, and waits for more.  When she is ‘in the mood’ she will lie on her back in my arms like a baby, and doze off. She’s big enough now that with her arm in the crook of my elbow, her legs hanging off of my lap by a good 6 inches.

She LOVES her grandpa, and he loves her. She learned to climb up the couch using his inner thighs as a brace many weeks ago. Now she just takes a flying leap and gets on the couch. She can easily get on my lap in the recliner.  She loves the crazy playing with her grandpa; she’s not a prissy little girl- she’s ‘all in’ when it comes to playing. He’ll put her down in case she’s had enough and she always turns around immediately and wants more. 🙂

Last night, she walked over towards her pee pads and stopped cold. She leaned forward with her back legs planted firmly and acted like she was stalking some sort of evil prey.  I couldn’t figure out what in the world she was confronting, so went over there expecting something fierce. It was a plastic bag from her pee pads that had fallen on the floor.  Uh huh.  Go Killer!  I’ve seen her smack bugs with her paw and then eat them (yuck- but she’s too fast to pry them from her teeth), so thought that maybe it was at least something alive… nope. The dreaded pee pad bag.  Oooohhh. Gotta watch out for those !

Her curiosity is fun- it’s refreshing to see things for the first time with her.  Sometimes she does it from the safety of my arms, but most of the time she just charges in and pokes around. She does NOT like mirrors. She’s not curious about who that dog is, or why I’m over there and holding her.  I’ve got things ‘baby-proofed’, and so far she hasn’t been interested in chewing up my stuff.  She has an elk antler that she loves, as well as Nylabones for this teething that is making her kind of cranky and nippy. But there isn’t a mean bone in her. Even when she’s charging at something, her tail is going like crazy, ears are up, and a sort of ‘smile’ on her mouth… never bared teeth.  She’s just goofy !!

So that’s what I’ve been doing. I’m exhausted, but I love her.  The season change is hard with the pollens and erratic weather. We may have strong storms on Monday (possibly tornadoes), so I have more headaches and muscle pain.  I saw the pain guy last week.  Seems I got TMJ a few weeks ago, so he worked on that with a steroid injection.  I wanted to get some beef jerky, but figured my jaw would rebel… bummer, since jerky doesn’t mess up my blood sugar, and I’m always looking for protein sources that are ‘grab and go’.   I’ve been back to  reading other blogs more recently, but still miss regular updates from y’all.  Now that Shelby is playing on her own more, I can get back to writing and reading… funny how this blog world has become such an important community.  🙂

Big girl haircut !!

Big girl haircut !!

The view when I have been on the computer... Shelby brings me toys !!

The view when I have been on the computer… Shelby brings me toys !!

 

 

Just One of Those Months

For the past week and a half, I’ve had some moderately severe jaw pain on the same side where I broke a tooth, and had said tooth repaired, requiring me to open my mouth wide enough to swallow the Hindenburg.  It hurt.  But a few shots of novocaine, and I blew it off.  Until the novocaine wore off.  I’ve been hoping it would just get better on its own, but it isn’t, so I read up on some causes of jaw pain, and ended up going to an urgent care place this afternoon HOPING to get it checked out for being a fractured jaw bone.  The nurse practitioner was pleasant enough, but I’d never seen him, he didn’t know me, and as is common with weekend visits, I got the impression that they figured I wanted pain meds. I have pain meds. I want this fixed !  The intake people asked what pharmacy I wanted (since it’s Sunday), and I told them I  wouldn’t need any prescriptions (I tend to have ONLY my pain management doc deal with my pain prescriptions- keeps things much neater). The nurse practitioner informed me that ibuprofen or naproxen was the best option- which I agreed to without any issues- if this is TMJ- which he determined without feeling my jaw or doing an x-ray.  I felt dismissed.  I don’t go to urgent care places unless I’m pretty dang uncomfortable and need to at least get an x-ray done.  Waste of time.

It’s been a weird few weeks.  I fell about 3 weeks ago, dodging my puppy. It wasn’t her fault- she is just non-stop motion and can turn on a dime.  Fortunately, I landed ‘slowly’ and was able to sort of ease down to the floor, leaving my left side (same side as my jaw pain) the only thing bungled up, and even that was relatively benign considering what could have happened.  I didn’t even drop my microwave entree in my right hand !  But I was sore for a few days.  Maybe I jarred my tooth and jaw.

A week or so after that, one of my teeth (bottom LEFT) broke. I hadn’t noticed it being an issue before- it was simply not there when I was chewing a gum drop.  I found it by gingerly nibbling at the gum drop (too soft to cause a tooth to break), and made arrangements to get it checked- to at least file down the razor edge that was making my tongue hurt like crazy.  Then I got the tooth filled- which is where I had to open my mouth far beyond anything I’d done for decades, if ever.  I felt ‘something’, but didn’t say anything since I wanted the tooth fixed and then out of there.  The dentist is a decent guy- was a former neighbor when I was about 12 years old.  He got the tooth fixed, and I flew like dandelion seeds in the wind. I’m waiting until my dental insurance goes into effect on June 1st for anything major. I finally found a policy (Medicare doesn’t care about teeth) that I can afford and has decent coverage.

But since then, my jaw has been bumming me out, so I got it checked.  I am not pleased with the lack of diagnostics to make sure it’s not broken.  One x-ray would shut me up- I may call my regular doc tomorrow to see about it- she knows me and listens.  I just saw her last week for my disability paperwork review (pain in the butt paperwork for the insurance company).  I’ve declined over the last year.  She thinks that the chemo for the leukemia has pretty much trashed my body- but what was the option? If I didn’t take the 19 months of various IV and oral drugs, I would have been dead within  a week of diagnosis; I’d already had the bad lab work for about 3 weeks, and with APL, people are generally dead within a month if treatment isn’t started.  I had to do it.

We talked about the dysautonomia, and the probability that it’s from diabetes. My blood sugars were outrageous when I was diagnosed (like 389mg/dl for a random check, and an A1C of 10.2).  Nobody knows how long I had been undiagnosed. I was diagnosed with dysautonomia about a year after the diabetes diagnosis, so there’s a really good chance I had the diabetes a long time before it was confirmed.  I’d talked to my neurologist about what else could be done (since it’s a neurological disorder and all), but she didn’t know the cause (and didn’t seem too interested in finding out).  Now, I’m not sure if I should take it up with my endocrinologist, primary doc, or who.  I get tired of all of them, even though they’re all quite kind.  My oncologist tells me to just be thankful I’m alive- and I am. But I do have bummer times when I fell overwhelmed.

Since I’m not working as an RN, I feel so useless.  I have so many physical limitations, even though my brain functions pretty well most of the time. I have brain farts and some memory blips.  Sometimes my word-finding isn’t so great, and I can get emotional over stupid stuff.  And God forbid anybody have the thermostat over 65 degrees, or I panic because I know that I’ll pass out.  I wear the ice vest most of the time when I leave home.  Or, I shop at 2 a.m. to avoid the heat of the day.  I worked nights for years, so being awake isn’t hard.  It’s also nice to not have crowds who are impatient because I’m slow. I get tired of the heavy sighs behind me; I try to stay out of the way- but there’s always some grouch.  Why can’t people just be thankful it’s not them?

Sometimes I get worn out about my spine collapsing (degenerative disc disease), fibromyalgia, arthritis, degenerative joint disease (one knee already replaced- one with a partially torn ACL and medial meniscus that never got fixed because of that pesky leukemia), blah, blah, blah. My primary doc feels that some of the leg pain is from collapsed discs in my lower spine.  If I have ‘known’ collapsed discs in my neck and upper spine, there’s no reason to think they aren’t also in my lower back.  I haven’t had a pain free day since around 1995.  I don’t have that frame of reference anymore. When someone asks me to do one of those pain scales, it’s a joke.  A 5-6 is my normal.  That’s a good day.  I have to make something up to fit their paperwork.

But, I know I have a lot to be thankful for.  Yes- I’m declining. I am having trouble getting normal things done at home.   But, I’m still in my own apartment.  I am not captive to the schedules of some nursing home or assisted living place with employees that would rather work in a landfill.  My mind is still intact (or so I tell myself 😀 ) .  I have doctors that don’t judge me (now that I changed oncologists).  I have a puppy, who is really quite adorable, though she’s going through the ‘el destructo’ phase right now with teething.  But she’s a great little companion, and even though she’s only been here for 2 months, she’s got a place in my heart that isn’t going anywhere.  But some days are just the pits.

So, today I’m whining.  My body hurts.  I feel like a mutant.  A useless mutant.  And yet it could be so much worse.

Loves to play ALL. DAY. LONG.  4 months old now !

Loves to play ALL. DAY. LONG. 4 months old now !

Big girl haircut !!

Big girl haircut !!

 

But You Look OK….

Dysautonomia doesn’t ‘look sick’ when the symptoms aren’t present.  It only looks sick when the symptoms kick in, and that can happen just about any time for me.  My specific triggers are heat, pain, and fatigue.  I can’t leave home without an ice vest (about 5 pounds of ‘synthetic ice’ in four inserts that fit into a vest).  If I get overheated, even with the vest, the chances of my blood pressure and/or heart rate going bonkers is pretty good.

From the outside, it doesn’t look like anything is wrong with me.  But there isn’t any part of my life that isn’t affected.  My activity tolerance, even for basic household chores, is lousy.  I get things done, but it takes a  lot longer than it used to.  No matter where I go, I have to have a contingency plan in the event I start to feel like I’m going to lose consciousness.  I do have some warning, but if I’m away from home, the only thing I want to do is GET home.  I don’t want people around me when symptoms kick in.

Dysautonomia is a disorder of the autonomic nervous system.  It’s the stuff that is either reflex or not within my ability to  consciously  control.  Something goes haywire when I am up for too long, get overheated, or my chronic pain isn’t adequately controlled, and I simply pass out.  My body doesn’t compensate for the low blood pressure properly.  Or, I get a rapid heart rate that sometimes includes abnormal heartbeats and rhythms.

It’s frustrating when people don’t understand that I am not avoiding contact  just for the heck of it.   I would love to be able to do more.  I know my limitations.  I know when I can or can’t do something.   Every single day my ability to do things is affected.  Going anywhere is risky because of the temperature.  It may feel fine to others, but for my body it’s too warm.  Even in the winter I have to wear the ice vest.  When I do my once a month trip to the grocery store I have to wear the ice vest and remove my coat immediately when I get inside.  Usually I go in the middle of the night because there are fewer impatient people, and it’s cooler.

Making a sandwich or emptying the dishwasher is really painful.  I still have to do those things but I also have to rest afterwards.  Laundry is painful.  But it gets done.   I’m not feeling sorry for myself- it’s just the simple truth.  So I am responsible for avoiding things that make it worse, or could trigger completely losing consciousness.  That’s my ‘job’ since I can’t work.  I have to make my life as decent as possible without taking unnecessary risks.  Risks to me are simple things to most people.

I know I look fine.  But please don’t judge me for that when I say I can’t do something.  I’m thankful that I’m not any worse, though the dysautonomia seems to be progressing.  I still have a lot to be thankful for; I still live by myself, and get things done, even if slowly.  For those who haven’t seen what happens, please don’t assume I’m just being weird.

Outward appearance seldom tells the complete story about anybody.