Going on Palliative Care

And the biggest reason is that I can’t get specialists to listen, and am no longer willing to put this much energy into trying to maintain as much as I can of what I have left that works.   This week, I wasn’t even allowed to come to an appointment with MY concerns,.  I own the body.  I’ve been in it for nearly 55 years.  I get to have a say in my own health.  YOU do not have the final word- ESPECIALLY if you can’t bring yourself to just listen, or LET me come in to my scheduled appointment.  Help me see your view (I understand the surgeon’s need to know more- but it’s not about those two tests that are not needed- they were done, with no current changes in how that is going- there is a diagnosis; what is going on now is different).   That doesn’t seem to be part of medical practice in many of the specialists offices I’ve been in this year alone,  I’m done with the medical shit show in Northern IL.

I’m “complicated” on a good day.  Starting in January of this year, I started having some symptoms suggestive of gallbladder disease.  I got an ultrasound ordered by my primary doc, and yup. Big gallstones, but not inflamed.  OK.  Off to surgeon.  Saw him, then had some stuff come up with my kidneys, and because of nausea, I’d become dehydrated- so had to postpone gallbladder surgery.  Off to GI doc, whose nurse practitioner became absolutely rabid when I APOLOGIZED for coming across bitchy (I felt really lousy that day).  She went off on EVERYTHING I said after that, so I guess she assumed I was there for an old problem and proceeded to order tests already done TWO YEARS ago, for something that hadn’t changed, and it all seemed very punitive.  She didn’t even let me finish. The constant berating shut me down.  She chewed me out for not seeing the nephrology guy, when I’d been told they would call me.  Ended up the order got messed up, so they didn’t know to call- NOT MY FAULT.  Finally got kidney issues figured out after weeks of putting a tube in my own nose into my stomach to help get more fluids in (but not on good reflux meds because of kidney issues, so not flawless).  Then I broke my ankle on June 2nd.  I’m still healing from that.  I’m pretty sure my 5th metatarsal (toe) got whacked pretty well, also.

On Wednesday of this week, I was supposed to go see the surgeon again per MY request.  They called three hours before the appointment to tell me that the surgeon wouldn’t see me until I had the GI tests done.  I’d waited for weeks for that appointment. The nurse wouldn’t even let me explain MY side of things, and that I wanted the appointment to show the doc a possible epigastric hernia in case HE wanted to think for himself and order a test to see what was going on structurally…. nothing down my throat or inside of my stomach has changed, symptom wise, in two years.  A CT could be useful- if that showed something in my stomach, then of course I’d agree to repeat the EGD.  I also can’t do the follow-up that the GI folks wanted before because of transportation issues (my dad died- he was my transportation), so why do it all again, just to not be able to follow-up again?  Makes no sense to me.

I’ve been an RN for 33 years (disabled, but I keep my license and CEUs current).  I’m not stupid. But I am very frustrated.  I  absolutely understand the surgeon wanting to know what he was getting into, but I’d think that actually SEEING what I was talking about at the appointment I’d waited weeks for would have been useful.   I won’t see him again.  I was gutted after that phone call (no pun intended).   I was trying to be responsible by letting him see what was going on.  It hadn’t been as pronounced when I’d seen him before.  While spending weeks mostly in bed with my foot up, I’ve had to get up and down more (bathroom closer  in bedroom vs. living room), and that’s when it really popped up.  It’s been there before- but now it’s just weird.

If I have to fight this hard just to have a physician LISTEN, then I’m done.  I’m not in any shape to move somewhere with better medical care, and I think if I had to leave this house (last part of my parents left), I’d just die anyway.   No more specialists (except one required by Medicare for CPAP supplies). No more procedures. No more consultations.  Only simple lab work.  No more bad news. No more assholes.   No more being berated by unprofessional “professionals”.   No more having to fight to stay as healthy as possible.  I’ll be compliant with what I agree to with the palliative team, but otherwise, the less I have to have anything to do with the medical community in Rockford, IL, the better.

Thank GOD for the nursing care manager at my primary doc’s office.  She has been exceptional when all of this overwhelming stuff just becomes so crazy that I just fall apart. I’m still having issues with grieving my dad’s death.  The health issues, and never knowing what else is falling apart is exhausting.  I’m doing the best I can, but there are a lot of days when I’m really struggling.  Laura has been wonderful.  And she LISTENS.  If I feel heard, I can settle down pretty well.  None of the specialists even seem to think that there might be a lot more going on in someone’s life than the issue they seek help for.

Palliative care focuses on comfort, stress relief, and symptom control.  People don’t have to be terminally ill.  It’s also for life-altering chronic disorders… and I have several.   I can have things fixed if I want to (unlike hospice), but I really don’t see the point.  I don’t want to know if anything new is messed up. No more Pap smears or mammograms- I won’t go through cancer treatment again.    I. Am. Done.   Thankfully, my primary doc and case manager have been amazing.   Everyone in that office has been great. And, the doc is leaving, so will have to see a new one (gotta have a primary doc), but have some continuity going on there, and with the palliative folks getting on board, that should also help with the transition.

NOTE to Doctors who only see one body part:  You are part of the problem for any patient you see- not just me !   You need to talk to patients to get the whole picture before writing them off.  That other doctor whose ‘side’ you cling to has spent 10 minutes with me.  How is that very useful?   If you don’t HEAR patients, what good are you?   How much of your life do you expend just by listening? I’m guessing not much. In the meantime, shutting a patient down matters in every future healthcare decision they make. Nobody wants to put themselves in a painful situation on purpose- and YOU are a painful situation.  And any other medical people who are in contact with actual humans, take the high road if a patient is having a hard time.  It’s not personal (but can get there very quickly).  If you’ve only had 5 years of being an RN, and are a nurse practitioner, that sounds like you have ZIPPO clinical experience with more than one patient’s ‘stuff’ at a time.  It shows.  If you didn’t get laid last night, don’t take it out on me.   If your life sucks, don’t take it out on me.   And don’t blow off the patient’s ENTIRE history.  It is all connected.   Be civil.  Not cruel.

This is what you ignore, just with me:  psoriasis (autoimmune), nocturnal seizures, degenerative disc disease, degenerative joint disease (shoulders, hips, knees), dysautonomia, POTS, diabetes, GERD, history of multiple pulmonary emboli (at one time), gastro-esophageal outlet obstruction, acute kidney injury from dehydration (repeatedly), chronic pain from various causes, arthritis, history of leukemia,  peripheral neuropathy, carpal tunnel (bilateral),  progressive sensory neuropathy, severe heat intolerance, limited mobility, fibromyalgia,  limited ambulatory ‘distance’, bone spurs (neck, shoulders, hips, thoracic spine, lumbar spine), abdominal hernia of some sort (reminds me of ventral hernia I’d seen in the early 90s in a nursing home patient, but it’s a bit higher), sleep apnea,  and I’m sure I’m forgetting something.    It all effects everything else, so even if you don’t have to fix it, you MUST know about it to be prudent (i.e. not negligent).

I have had some great doctors here, but they are few and far between, and they leave.  Nobody wants to stay here if they can get away.   A couple have stayed.  I wonder about them 😉

For patients out there- the doctors work for you. Don’t put up with shoddy “care”.  Move on.   Cut your losses and run.  You deserve better- or at least to be heard.  They get paid for that.  Don’t be their victim.  Survive in a way that works for you ❤ 

Why Handicapped Parking Spaces Matter… Even If I “Look” OK

To look at me, I probably don’t look ‘disabled’- or ‘that bad’.  I have all of my limbs, don’t use a cane because of vision issues, am not in a wheelchair all of the time (though I will have a wheelchair by the end of the month for longer distances), etc.  I don’t have contracted or withered limbs, use braces to support my legs, or any other visible disability.  And yet handicapped parking spaces make it possible for me to go to the store on my own. Period.

My disabilities include peripheral neuropathy (my right leg is deteriorating and both feet burn at times), autonomic neuropathy (if I stand up for a period of time my heart rate accelerates and my blood pressure drops, or if I get overheated, I pass out), degenerative disc disease (my spine is ‘collapsing’ from the discs deteriorating- lots of pain), degenerative joint disease (have had one knee replacement, should have had another, but leukemia got in the way, and both hips have bone spurs), and at times my chronic pain is really bad.  (Did I mention fibromyalgia?)  It’s always there, but some days are worse than others.  I’m a gimp.  Who might keel over if I’m not careful and prepared.  I am also very intolerant of temperatures over about 65 degrees for any length of time.

Having handicapped parking makes going out at all possible.  That along with my cooling vest.  Those two things (and soon the wheelchair) make it possible to be ‘normal’- or at least take a stab at doing normal things.   I already look weird from leftover chemotherapy side effects: my eyebrows never grew back right, and I’m much heavier than I was prior to cancer.  I keep my head shaved because of how my hair affects severe heat intolerance.  But having a closer parking space gives me some freedom on the days when I am able to leave home.  It’s a big deal !

When I see someone park in a handicapped parking place, but leave someone IN the car in that place, and walk in to the store with no indication of disability, I get annoyed.  Now there are a lot of disabilities where the person is able to move around relatively normally.  Some folks have handicapped parking for emotional disabilities.  Those are valid.  But I’ve heard people talk (or read) about using their friend/spouse/partner’s disability placard to get good parking.  That is illegal, and morally reprehensible to me. Then there are those with no placard or handicapped license plate at all.  On a day when I can leave home, those closer parking places are crucial !  They’re not just a convenience.  I can’t leave home just any old day.   Walking an extra 20 feet can be incredibly painful.  More pain can cause unstable blood pressure and heart rate, and that can lead to losing consciousness.

I know which stores I can go to and be safe, because of the proximity of the handicapped places (one hospital here has the handicapped places down a flight of stairs or a lengthy ramp… great planning; they do have valet parking until 5 p.m., so I have to schedule any tests prior to then).  I know how far I can walk before getting a grocery cart to hold on to.  I haven’t been to a mall in about ten years, except for once when I was waiting for a new battery to be installed in my car- I gimped to the food court for a soda while waiting, then gimped back.   I’m hoping the wheelchair will allow me to ‘chair walk’ (use my feet to propel myself as a form of exercise and general mobility) in the mall.  I’m not a huge fan of shopping, so it’s more of an issue of seeing other human beings and being more mobile. As it is now, I shop about once a month, and aside from my dad, I might not see other people for weeks. It’s been like this for 11 1/2 years.  I have joined a Bible study recently, which has been great.  It’s hard to walk from the parking lot  (with handicapped parking) to the room we use, but I’m getting there. It takes about 36-48 hours to recover.

But without handicapped parking, leaving home is not even an option for me and millions of others.   Staying as independent as possible is really important- not only to maintain whatever physical mobility is left or do ‘routine’ chores,  but to interact with others.  For those who need handicapped parking, it is not a convenience.  It’s a necessity.

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. ❤

My Friend Gretchen

I moved back to my hometown in late 2002, and left my friends of 17 years back in Texas. I got a nursing (RN) job fairly quickly, but then the dysautonomia and seizures made it impossible for me to continue working, even after finding a ‘desk job’ as an RN. I passed out too often to be employable. SO, I was at home. People here don’t keep in touch with ‘throw away’ co-workers, so I didn’t really have friends. There was nobody to list on any ‘who to call’ paperwork, except for my dad. So I was at home pretty much all the time. I had some really nice neighbors. ‘L’ lived directly across the parking lot from me, and Gretchen, and her daughther ‘E’ lived upstairs from ‘L’.  I became friends with ‘L’ first- mostly since I saw her the most, though I saw Gretchen periodically, and ‘E’ when she was home from college.  ‘L’ eventually moved to a condo, and Gretchen moved ‘L”s apartment downstairs.

For a while, we saw each other in the parking lot, and also got used to each other’s routines. She knew when my vertical blinds had been closed too much, and I knew when she was grading papers at her dining room table. I later found out that when she thought I hadn’t been seen for ‘too long’ she’d call the apartment complex office to see if they’d heard anything- to be sure I was OK.  I spent a lot of time in the hospital for sometimes weeks at a time- so she’d check up on me. She’d see my dad checking in on my dog (Mandy), and since they knew someone in common, they’d chat.  Gretchen taught 4th grade for many years in a neighboring school district.  Eventually, we talked more. I’d see when her grandson (first grandchild) was brought to see her when he was tiny, and other times when her daughters (‘A’ – the baby’s mom, and ‘E’, the college student) visited.  Being on disability, and home the vast majority of the time, afforded me a lot of time to see who was coming and going.  We always talked when we saw each other, but it was more ‘parking lot neighbors’ kind of stuff.

I forget which one of us had a knee replacement first, but that gave us something in common. We’d commiserate over the rehab process.  Then Gretchen started having other health issues, and also had to go on disability.  I understood what it was like to have a profession taken awayIt’s not the same as retiring. It’s being robbed of something that is truly loved, and having no way to get it back. It hurts.  I ‘got it’.  We started talking more, and becoming actual friends. If she needed me to go get her car when she’d have to go to the hospital, I was glad to help out.   I don’t consider a friend someone who is paid to be in the same place at the same time (that’s a co-worker- and friendly co-workers are incredibly important, and can become friends). Someone who is paid to provide a service isn’t a friend- though they can be friendly. To me, a friend is someone who shares common interests and is loyal and fun to be around.  Gretchen was a friend.

She decided to move closer to ‘A’ and her son-in-law  in another state, which was really hard, but I was also happy for her. She had a grandson she adored, and a granddaughter on the way. She was so excited.  ‘E’ was doing well in school, and she was so proud of her.  And we still had my unlimited phone plan (I had a landline; she had her cell phone), so keeping in touch wasn’t a problem. It would be different, though.  I could call Gretchen when she lived across the parking lot and ask if she’d eaten yet… her reply was “I’ll get the car.”  And off we’d go in literally less than five minutes.  She’d show me her latest treasures from the Target discount racks, and be so excited. I think she went to Target at least 3-4 times a week; sometimes I’d tag along.  I haven’t been able to go there since she’s been gone…  She called me when she couldn’t get her quilts in a ‘Space Bag’, and we’d fold and shove and vacuum until the thing worked.

Gretchen had had another knee replacement and began having complications. She had fallen, and also had some tendons fall apart and an infection.  She had several more surgeries, and we’d talk daily about something, either in the hospital or in one of the rehab centers (she knew I’d worked in rehab and nursing homes as an RN, so I knew what was acceptable care), as well as during TV shows we both liked.  It was a rough time for her.  She did come back to this town for a month not long after her granddaughter was born, and ‘A’ and her family had taken a trip.  We did a lot of thrift store shopping for the grandkids (we packed the Jeep absolutely full), and had fun just goofing off together.  She had an infection brewing in her leg, and we’d gone to Walgreens…both of us had forgotten our glasses. Fortunately, she could see close up, and I could see distances, so between the two of us, we got some panty liners to put on her leg to sop up the drainage from her leg. It was a bit unconventional, but it worked.  We just laughed about our combined visual deficiencies, and how we made it work 🙂 We always found something to laugh about !

After she had the last surgery, she was in a long-leg cast, but Gretchen wasn’t one to sit around.  She wanted to be mobile ASAP, and didn’t let a wheelchair or cast keep her from moving herself from chair to bed, or wherever she needed to go (like in front of her computer to order stuff for the grandkids and her daughters).   She’d been through a lot after the last knee replacement, and it seemed like things were going well.  She was going to be by herself one weekend morning, and she’d asked me to call her just to see if she was OK- and I had no problem with that; we talked all the time anyway (or she’d e-mail me; I just found a few of her old e-mails that had been saved the other day… kinda freaked me out). 

I called as planned, and got no answer. I knew something was going on- ‘A’s home phone had multiple lines; even if someone was on one line, another would be open. And, they weren’t supposed to be there. Gretchen was supposed to be home alone. Something was wrong.  I tried several more times, and was trying to figure out what to do if I couldn’t get ahold of her.  And then ‘A’ called me. I knew before she told me.  Gretchen had died.  They’d found her on the floor that morning.  Whatever happened had been fast.  She had some other medical issues, so there were very plausible reasons for a sudden death… and it was sudden and unexpected.  It was later found that she’d been on the computer as late as 1:00 a.m. that morning; she was found before 8:00 a.m., or so.  I was stunned.  My friend was gone. My friend’s daughters, son-in-law (who she also adored), and grandkids had lost an amazing part of their family.

Since then,  twin granddaughters were born less than 2 years after Gretchen died. She would have been so excited and  having so much  fun with all four of those beautiful kids.  I keep in touch with ‘A’, and her husband, and ‘E’, which has been great.  I see the updated photos on FaceBook.  I know Gretchen would be so proud of all of them.  Her heart was so big, and she loved them all so much.

I don’t think Gretchen ever met a stranger, she was just one of those people who was kind and really cared about people. She got a bunch of kids’ hats, mittens, and socks when we’d go thrift store shopping for kids in her class who didn’t have much.  She thought about what other people were going through when she had a lot of her own stuff going on. But her family made her light up more than anything.  I was so angry that she was missing out on them… on those incredible grandkids growing up, on ‘E”s life after college and grad school (and that she’s working for Target !!), the twins (that she never knew about), and so many of her friends and her former students.

But I got to know Gretchen for a few years.  Very few people have been in my life for such a relatively short period of time and left such an impression.  She was a real friend. I’m lucky to have known her. ❤

Mourning the Old Me

Disability of any kind is a thief.  It takes away being considered as valuable as other humans. It steals identities (my existence WAS being a nurse). It robs people of a sense of purpose and value.  It is a constant reminder of what was.  And, no matter how hard I try to figure out some way to still be that younger, healthier (though the health stuff started decades before my body finally pooped out), and active person, my body says ‘nope- can’t do it’.  I’ve had to adjust to a new normal- and I haven’t been that good at it. I have days when just getting from morning to bedtime is a struggle emotionally and physically.  I miss my old life.

I do realize that I’ve got a lot to be thankful for. My body is essentially intact (I’ve got all four limbs, and they operate moderately well). I can still think, though I do get a bit foggy at times. My sense of humor is intact. I have a decent home (apartment). I love my dog- crazy as she is ❤  I have my doll collection, gemstones, and books.  I’ve got a great computer, and a lot of cable TV channels.  But I’m not ‘whole’ when my body is broken down and examined.

I look relatively intact, which is great- but it also gives the impression that I’m ‘fine’.  What people don’t see are the endless days of chronic pain from fibromyalgia, degenerative disc disease (most of spine), bone spurs on my spine, osteoarthritis, and chronic headaches.  Methadone and Norco don’t give much relief.  I had a neck injection today (steroids and numbing medicine); it lasted an hour.  People don’t see the dysautonomia symptoms (though they might see my ice vest that I have to wear to avoid passing out in public when I get overheated- which happens in any environment over 55-60 degrees).  Indoors with the heat on is horrible- I can’t go to appointments or to anybody’s house without being packed in ice.  Nobody sees the nocturnal temporal lobe epilepsy, or the chewed up cheeks  and funky ‘hit by a truck’ feeling I get when I wake up after them.

Nobody sees the  struggle to just get basic chores done.  Going to the grocery store is agonizing, and I’m slow, so I go in the middle of the night. It’s cooler (still wear the ice vest), and fewer nasty people are there to sigh loudly, in what sounds like disgust, as they try to get around me. I stay over to the side as much as I can- but at night, I don’t have to deal with them.  Getting things in from the car to the kitchen is very painful. I’m done for the day after that.  I get paper goods and cleaning supplies mailed from Walmart.

People don’t see that getting dressed is a careful dance of getting the clothes on and not losing my balance.  I don’t ‘bend’ well.  Socks are a major problem.  Now, with this crazy thing going on with one of my neck discs, using my left arm is getting harder. And I can’t use it for moving or carrying things as well.

My apartment needs to be thoroughly cleaned, but it hurts way too much for me to get after it with any sort of real productivity. I can get a small area done here and there, but not what I ‘approve of’, and not like I used to get done.  My kitchen floor is disgusting by the baseboards.  I’ve decided I will do six inches of it at a time with a Mr. Clean Eraser.  I have things I’d like to get donated to charity, but I can’t move the boxes.  I need help, and am hoping that the people from a church who agreed to help will pan out.  I’m hoping.  A lot.

Looking at me, I look ‘abled’.  If I move, it doesn’t take long for someone to see that I’m definitely limited, and some things are just not possible anymore. It bothers me every day.  I want to be more useful. I want to be of value somewhere. I want to be missed if I don’t show up.  I want to have something someone else can benefit from (nursing skills).  I want my old life. It wasn’t perfect, but I was functioning at a level that kept me employed.  Knowing that the last place I worked at found me more of a liability than an asset  hurts (they had to call an ambulance at least 10 times in about 2 months at the end). They had nothing I could do within my limitations.  Being unconscious isn’t good for a resume’.  I had a good reputation as a nurse when I was in Texas.  When I moved back here, the dysautonomia and seizures got too bad.  I wasn’t worth anything as a nurse.  But I’ll always identify myself as being  a nurse. I keep my license current.  I got that license 27 years ago.  It’s still mine.

And yet, I try to look at what I have. I’m not homeless (which I probably would be if I had to rely on Social Security alone).  I pay around $500/month (MONTH) in Medicare premiums and co-pays- but that’s better than nothing. (Medicare is not free by a long shot).  But, I don’t have much leftover for much ‘fun’ stuff.  This month, I got some good bread- and I’m so happy to have it.  I’d love to get more fresh produce on a regular basis, but it’s not possible. But I get by.  I’m not eligible for the $133.00/MONTH that food stamp recipients get… how are people supposed to eat ‘lean’ foods  on that?  Healthy stuff is expensive. I’m trying to get blood sugars straightened out after what chemo for leukemia did… So I do the best I can.

I miss what was.  I have days when accepting this ‘new’ normal is really hard, and I don’t do it well.  But, it’s what I have to accept- and I’ve got to figure out how to be of value in some other way.   I believe that God has a plan for all of this- I won’t pretend I ‘get it’ yet. But I do have faith that for some reason, my life is what it is- and that I can be used to help others. Or it would be in vain.  I won’t go there.  I’ve survived too much to just be some joke. I want to be able to help people who have been through or have similar stories. I want what I write about the rape I survived to be of some value to someone else who has been too scared to talk about what happened to her.

I have to really accept that I can’t do what I used to do, and just figure out ways to do what I can to continue living independently, and with relative quality of life.  I’ve got the dog- she helps a lot.  And I do have people who care about me. I really don’t have social contacts- though I’m rarely ‘ok’ enough to meet someone somewhere.  I do have much more to be thankful for than the ‘disasters’ that have come to be no big news when they occur.  I watch the news, and realize that I’m fortunate.  While it’s not a competition, my life is worth living, even though I’m not ‘intact’…my challenges are still valid reasons for frustration- but in the long run, I could be doing a lot worse.  Some days  I remember that more than others. ❤