The Wacky World of Peripheral Neuropathy and Methadone

This hasn’t been a good weekend.  I slept most of January 1, 2016  (Hey, welcome new year !!), and the next two days haven’t been anything to cheer about (although I am alive, so that gets points).  This peripheral neuropathy is kicking my butt, and this morning it felt like a literal kick just to the right of my butt cheek crack. It is like a deep bruising- definitely a muscle type pain… not the weird ‘nerve’ pain of burning, numbness, tingling, etc.   The burning pain in both outer thighs is also bad.  Generally, the burning pain has been when I’m in bed, but today it has decided to join me until ?  But when I touch those areas on my thighs, it feels numb.  And then gentle contact with those areas brings a type of pain that is disproportionate to the degree of the touch.   When I say ‘burning pain’, I’m not talking about sunburn pain… I’m talking about hot oil type pain, over an area the size of the sides of both thighs.  The first time it happened, I froze with confusion.   Chemo and diabetes can have some gnarly complications.

I know I have a lot to be thankful for.  Since getting the CPAP for sleep apnea last year (close to this time), my head feels much more clear, and the morning headaches have been reduced by about %99- that  is HUGE !!  I’m still tired, but not nearly as wiped out as I had been post chemo.  Chemo fatigue is indescribable.  I’ve had fibromyalgia fatigue since the late 1990s, and it’s bad…. but chemo fatigue can be immobilizing.  Just getting up out of the TV chair to go to bed was overwhelming.  Fibro-fatigue is bad- but at some point, it eases up a bit to take care of basic daily activities enough to function, even if minimally.   (I live alone, so nobody to ask to do something on the fly…. there are a couple of friends around here who are so willing to help, but they have jobs and lives, so it can be hard to schedule a good time for both of us- but they are so willing, which is great.  My 83 year old dad is around, but I want him to have a life… I do ask him for help at times, but I don’t want to take advantage of him or anybody else). 

I know I need to contact the pain doc again.   This next two weeks, I have lab work, a follow-up with my endocrinologist, a routine visit with my neurologist, and the endoscopy with the ultrasound and biopsy of the junction between my stomach and lower esophageal sphincter for the “clinically significant lesion” that was found during the esophageal manometry to clarify the spasms in my esophagus that make swallowing so difficult.  Sometime in all of that, I need to see the pain guy.   And the CT of my pelvic area.  Can’t forget that.  I actually need to get that done before the pain guy, since I don’t want to do any spinal cord implants (to sort of confuse my brain about pain perception in my lower spine area) until I’m sure that nothing lurks in my pelvis.  SO many symptoms are common to a bunch of things, and I don’t want to have a metal implant (kind of like a pacemaker sized thingie) put in if something else is going on.

In the meantime, I’ve been prescribed methadone (t’s not just for getting heroin users off of heroin and on to something that has no ‘buzz’- it is a legit pain med), and have already been on ‘adjunct’ meds for other disorders that also help with pain management, like gabapentin, carbamazepine, clonazepam, cyclobenzaprine, and topical things like Icy Hot ‘sticks’, Salonpas patches, and sometimes just lying still on my uber comfortable bed, with my CPAP machine.

About the methadone.   I don’t like the stuff.  It does work for pain (same category as morphine)…. but I worked drug and alcohol rehab for about two and a half years, and from an objective point of view as a detox RN, it is the worst substance for detoxing.   I’m not concerned about addiction for myself.  I generally have a lot of pain meds left over, to the point of throwing them away because they’ve been in my drawer for so long.   I don’t mess with the instructions or dosing set by my doctor (who is board certified in anesthesia and pain management…. not a doc-in-a-box who only accepts cash, and has a line around the block).   I get no emotional ‘perk’ from the stuff.  But with any controlled substance (as well as things like caffeine, nicotine, etc), there can be physical tolerance and dependence.  That gives me the willies, which I guess isn’t a bad thing, but it does make it hard to take the methadone as often as I can (three times a day), even when I’ve got pain that ‘justifies’ taking the stuff.  It’s common knowledge that pain is easier to manage when it’s treated before it gets really bad… but methadone is no joke.  I have a lot of conflicting feelings about taking it.  And yet, the pain I have now is interfering with just moving around my apartment.   I need pain relief.  I’ve discussed my fears with my pain doc… and he reassures me that he will never leave me hanging as far as dealing with physical tolerance.

My pain doc told me that if the methadone doesn’t help now, the spinal cord implant is the next thing he would recommend.  I trust this guy, mostly because he is not a pill pusher.  He does prescribe them, but he also does nerve block injections with steroids and numbing meds, and options like TENS units (little electrodes on the outside of the body to help ‘trick’ the brain about pain perception).  He has rules about how things work at his office (no dosage adjustments over the phone, no messing with doses/frequency without his approval, random urine drug screens, calls for refills have to be on certain days, etc.).  If he feels people are not following his rules, they’re gone.  No jerking around with pain meds.  I respect that a LOT.

I also consider my age.  I’m 52 years old, and might have another 25 years, give or take, to cope with the neuropathy (and other) pain.  It concerns me to take strong stuff now, knowing I have an unknown number of years to live with this crazy body and the weirdness going on with it.  And yet I hurt.  I can’t take NSAIDs (ibuprofen, naproxen, etc) because of chronic gastritis.  I deserve a decent quality of life with less pain, and if that means pain meds, I need to accept that.  The doc can only help me if I am willing to follow his instructions with the meds that scare me.  I don’t expect to be pain free- that is totally unrealistic.  But less pain would be good.  I’ve had daily pain since the mid 1990s… it’s getting worse, and from different sources.    I want to be able to have some times to enjoy time away from my apartment, and hopefully with friends (those I’ve known for a while, and those I’m meeting at the Bible study).

I thank God for the doctors I have.  They listen, do the proper testing to find out what is going on, and in the case of my primary doc, orders things like my wheelchair to help me be as ‘able’ as possible to get around outside of my apartment.  That has been huge.  Going to the weekly women’s Bible study has been a wonderful way to get away, be around others, and meet people !  I’ve been isolated for the most  part for nearly 12 years. It’s been SO good to be around others, and hopefully be a source of positive interaction for them.

 

 

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Ramblings of 2015

Here it is… New Year’s Eve.  Getting ready for 2016.   It’s been a bumpy 2015, though I realize I still have a lot to be thankful for.  A lot has happened.  A few things are still being diagnosed.    There have been family changes.   And like always, I seem to manage… but it’s getting harder to do it on my own.   Fortunately, I believe that God has it all figured out. I don’t have to understand it all…

Last year about this time, I did a home sleep study, that showed that I stop breathing about every 3.5 minutes….so basically I don’t sleep enough for it to be useful.  I hadn’t been getting to the REM stage, so restorative sleep was kaput.  I went in to get ‘fitted’ for a CPAP (continuous positive air pressure) machine, and it has really helped.  The morning headaches have pretty much disappeared (that alone was worth the price of admission).  I dream more- weird dreams, but not bad dreams, and I’m getting to the stage of sleep where I can dream.  Add a pulmonologist/sleep specialist to the list of doctors I see- but this guy is A-OK.  The increase in the quality of my sleep has perked me up, so I want to do more.  I can’t always physically get it done, but it’s nice not to feel like I’m a total slug.

Then the summer came around, and it seemed like my body decided to take a flying leap towards deterioration.  From the head down:  scalp psoriasis got much worse (no more dark colored shirts for these shoulders), swallowing got bad, GERD got worse, back pain intensified, blood sugars got nutty again,  legs started having intense burning pain (as in being set on fire… not sunburn), right leg  atrophy got worse (muscle shrinking), legs started getting weak to the point of feeling like they would give out, blood pressure and heart rate started to do their dysautonomia/POTS thing- again, and something I’m forgetting.  Oh, yeah…. the kidney function tests got weird after my blood pressure got really low.

The psoriasis is an autoimmune thing (not to be confused with autonomic… they are very different).  I keep my head shaved for the autonomic disorder (very heat intolerant, and what is more heat retaining than a head full of hair that is about as thick as a bear rug?), but now the psoriasis ointments benefit from not having a ton of hair to muck through.  SO, I’m usually mostly bald, and flaky.  Not like normal dandruff flakes (those are there with the psoriasis as well), but like sheets of skin the size of my little fingernail peeling off.  Lovely.  And, yet that is more of an annoyance than life-altering.

The swallowing is still being evaluated.  So far, it looks like achalasia (esophageal spasms that don’t allow for food to pass into the stomach normally; feels like a golfball is stuck in my pipes).  They also found a “clinically significant lesion” at the junction of my stomach and lower esophageal sphincter (end of the esophagus), which will be further checked in a couple of weeks when I have the third endoscopy in five months, but with an ultrasound and biopsy done this time.  I don’t like the word biopsy, and don’t like that it took about a MONTH to get the biopsy scheduled. To me, that’s not OK.    In the meantime, it hurts, and food choices are more limited, or I have to pull things out of my throat with my fingers. The safe foods are  more carbohydrate ‘intense’, which hasn’t done much for my blood sugars.  SO, add a gastroenterologist, and return visits to my endocrinologist.

The reflux was also really bad, but changing some of what I eat, as well as  a hefty dose of a proton pump inhibitor (GERD medicine) has helped somewhat.   I can no longer take ibuprofen, or any meds in that category because of chronic gastritis (inflammation of the lining of my stomach), so that is a problem with pain management with other stuff.

I’ve got degenerative disc disease, so it’s not all that unexpected that lower back pain gets worse over time, and I knew I was going to have to go back to my pain doc. I needed a current MRI so he knew what was going on.  That MRI was horrible.  I’ve had a lot of MRIs, and usually it’s no big deal.  This one was for both my lower back and neck (it’s in worse shape with messed up discs and bone spurs), with and without contrast, so it took a long time.  I bailed after the “without” part of the test. I got both the neck and lower back done, but  I couldn’t take  being on my back any longer, not able to move.   Anyway, I went back to the pain doc, where I got an injection in my back (have had a lot of those; they aren’t that helpful, but it does help a little for a few hours).   The next step with that whole mess is to have a spinal cord implant thingie that blocks how my brain perceives pain.  It fixes nothing except perception.  I’m going to have a pelvic CT just to make sure something else isn’t going on before I have something implanted in my back/spine.  In the meantime, it’s pain meds (that I don’t like).  They do help, but I am very careful about making sure I don’t get too used to taking them.  I’m not concerned about addiction.  I get no ‘perks’ other than pain relief.  I use them as directed.  But physical tolerance is something that happens with several types of meds even when used as directed.  It is not the same as addiction (no psychological component ), but can cause symptoms if the meds are suddenly stopped.  So I’m careful. I don’t use them every day.   I follow the dose instructions.  I don’t mess with them.

During a routine follow up appointment with my oncologist, my lab work came back funky for my kidney functions.  My blood pressure had been low for a while, and evidently low enough to mess up blood flow through my kidneys.  After a few medication adjustments, my blood pressure came up and my BUN and creatinine went back to normal, along with my glomerular filtration rate (which had put me in the stage 3 level of chronic kidney disease).  One thing that has always spooked me about being diabetic is kidney failure.  I’m not sure I’d agree to dialysis if it involved the sort that requires dialysis three times a week no matter what the weather, for 3-5 hours at a whack.  That’s not a life in my eyes.   Just my opinion, though I’m sure if it came down to it, I’d do dialysis for  a while, and make any other decisions along the way.

My right thigh had started to shrink (atrophy) a couple of years ago, and a muscle study (EMG) that involves pins stuck into the muscle with a bit of an electrical jolt thrown in showed that I have neuropathy.   Between being diabetic and a LOT of chemotherapy that often gives people neuropathy that don’t already have it, I was like a neuropathy magnet… and it was getting worse.  During the summer, I started having sensory issues.   As in it felt like my right thigh was literally on fire.  Ignited with an accelerant type of fire, not a sunburn.  I’ve got a pretty decent pain threshold (as in joking with nurses during bone marrow biopsies), but this pain would not only wake me up at night, but briefly immobilize me while I tried to make sense of the intense fire sensation, and no fire anywhere near me.  If/when I got myself rolled over ON to the burning leg, it would start to subside.  The same area was numb to touch all the time… Back to the neurologist for another EMG.  The sensory peripheral neuropathy was now said to be progressive (I think most of them are).    Then back to my regular doctor to discuss medication options that wouldn’t mess up the rest of the pharmacy I take.  And, to have her check my muscle strength.  The right leg isn’t so good, and if I’m standing for very long, I feel like it’s going to give out…. so I now have a wheelchair for more than walking around in my apartment, or to the dumpster- which I still do to keep using my legs as much as I can.  The other leg decided to join in the burning pain and numbness, so it’s a two-fer now.   The wheelchair has been a huge help  in getting around at church (I joined a women’s Bible study this fall- the first socialization in years).  I hope to go to the mall soon.  😀 DSCN4140

With my blood pressure and heart rate starting to be weird (kind of like it was in the beginning of the whole dysautonomia business), I was getting more symptomatic.  One night on the way to my dad’s girlfriend’s house for dinner, I started feeling like I was getting a bit foggy-headed, and my heart rate was going up.  Time to head for home.  Don’t pass go. Don’t collect $200.   My internal med doc (regular doc) had already adjusted my long-acting blood pressure med a couple of times,  (paradoxically helps keep my blood pressure UP, unless something isn’t working even more weirdly) , so she sent me off to a cardiologist – more specifically, an electrophysiologist who deals with heart rhythm problems, and dysautonomia.  The good news was that my EKG in the office was OK (which was expected).  My echocardiogram (ultrasound of heart) was OK.  Not perfect, but not bad for my age…. my AGE….. arghhh, I’m getting older on top of all of this  :p .  Thankfully, she didn’t want me to hook up to one of the 3-4 week King of Hearts monitors for extended testing. Those are annoying.  I’ve done them twice.  I end up with episodic tachycardia (fast heart rate), PVCs (not good if they keep going but a couple of them aren’t that big of a deal), and ‘burns’ from the electrode adhesive.   I’ll go see her again in a couple of months as a follow-up.

Sometime during all of this, I went back to my endocrinologist after my A1C (average blood sugar over about a 3 month period) went up more than I was OK with.  I hadn’t seen her in about two years…. I’m SO tired of seeing doctors.  But she got me some new fangled insulin samples, as well as the ‘good’ short acting stuff and told me what to take.  I found out that my Medicare part D (drug plan) would cover BOTH of them at the Tier 2 copays !!  That was huge !  I actually cried with joy at being able to get the ‘good stuff’, and not have to take the “disco insulin” anymore (it was popular in the 70s) .  God bless Walmart for making disco insulin available for $25 per vial ( good insulin can be 10x that price).  But I was going to be able to get the good stuff, AND the endocrinologist got me enough samples to get me from the beginning of October THROUGH the end of the year !  😮

SO, just from medical junk going on, I’ve seen a pulmonoligst/sleep specialist, internal med doc, oncologist, cardiologist, neurologist, endocrinologist, gastroenterologist, and board certified pain management doc.   Good to have all of those folks to help.

My 100 year old grandmother died on Halloween. There was a lot of really snotty stuff that went on with the living siblings (aunt and uncle) ‘passing along’ information to those of us grandkids whose sibling parent was already deceased.  From my standpoint, there is no more family besides my six cousins (in one family).   I am in contact with my mom’s deceased brother’s kids, and that’s it.  Toxic people can be prayed for from a distance.  I will always wish them well.  I will not be part of the games by pretending that it was all OK.  I couldn’t go to the funeral (see above), and the six cousins who also have a deceased ‘sibling parent’ weren’t even seated with the rest of the family.… ’nuff said.   Who knows what my other cousins have been told about how we were left in the dust with being informed about changes in grandma’s condition (admission to hospice) AFTER they’d all had a chance to go visit grandma from various parts of the country (not all did go, but they KNEW what was going on).  And it really doesn’t matter anymore.  It will be very clear in the end when we all meet our Maker.  The aunt and uncle (living siblings of my grandma’s) have to live with themselves.  I don’t.

I’m so thankful for my dad.  He’s my earthly ‘rock’.   He’s 83 years old, and going strong.  We talk every day, and see each other at least weekly.   It’s a gift to still have him in my life.    We joke with each other all the time, which is great- but I’m also so grateful for him.

Shelby turned three years old on Christmas Eve.  She’s still a ‘puppy’ at heart, and my baby.   She had to have a toe amputated this summer- it was benign (there was a swelling and firmness to it that was suspicious)… and she’s back to running around all over the place.   She really is a wonderful companion.  She’s nuts… but that’s fine ❤ DSCN4026

Joining a women’s Bible study was great and I look forward to the new semester starting next week.  It’s been a LONG time since I’ve had much continual socialization opportunities.  I have to take my cooling vest, wheelchair, and Bible with the  specific study guides, but it is such a blessing to feel like I’m a bit of a part of something.  It’s at the church where I grew up, so there’s a sense of familiarity, and I’ve met some really nice new people.  I also ran into the mom of one of the tiny babies I looked after in the church nursery (who was my favorite in the 0-7 month nursery- she was such a bitty little thing, and so cute; I claimed her as mine for an  hour each Sunday 😉 ).  It was great to see someone from the past.

A lot has gone on… it sounds like most of it was ‘bad’, but I don’t feel that way.  I’m getting some help with making life a bit easier (wheelchair, better insulin), as well as less isolating (Bible study).  That trumps the bad stuff to the moon and back.   I’ve accepted that I need help with some things, and have a couple of friends who are willing to help. My dad is healthy and a lot of fun.   I have a great relationship with my birth mom, as well as her extended family.   I can still live in my own apartment, and have my goofy dog.  Through Facebook, I can remain in contact with family,  friends from Texas, as well as those I’ve known from before then.   No matter what is going on, I believe that God has it all under control for His good.   I don’t have to understand it, but I do find comfort in His ability to get me through whatever goes on.  I always seem to land on my feet (more or less), and I believe that my faith is what gets me through things.   God is good.

Bring it on, 2016 !  😉

 

 

Tis The Season…..

….to have all sorts of things churned up.  I don’t really get ”depressed’ over the holiday season, but more a vague sense of being overwhelmed since there are a lot of ‘anniversaries’ around this time.  This year added a new one with the death of my amazing, crazy companion- my miniature schnauzer Mandy, who died on December 27, 2012.

I’m still crying pretty much every day when I think about her, and especially about that last day.  I’m very thankful that that ‘end’ part was pretty fast.  And she was in my arms.  At first, she whimpered enough to alarm me, and from that point until she was actually gone, no more than 15 minutes went by.  After she  peed, and then froze in her tracks, she seemed confused, and not sure what to do, so I just held her and told her how wonderful she’d been.  Her breathing slowly stopped as I held her on my lap.  The ‘new normal’ of not hearing her come running when I mess with the dishwasher or clothes dryer (she had a thing for appliances), of her not leaving the room when I sneeze (or even said the word ‘sneeze’), or escorting me to the door when I got my keys to get the mail.  I didn’t have to say anything; she just knew.  I miss her more than words really can describe.  She was my only companion here in this city, for the past 10 years.  I talk to my dad every day; I saw my dog 24/7- especially since being on disability since April 2004.

Then there is the whole issue of being disabled.  It is somewhat worse in the winter months since everybody has the heat on. I don’t tolerate heat- to the point I shaved my head again (well, I had a professional do it; I wanted to avoid slicing my ears off).  With my ‘normal’ hair (mine is really, really thick), I can’t tolerate the heat it retains. Think dead animal on my scalp.  I also have to see a surgeon this next week about some (more) cysts on my scalp that are painful.  They need to go, so the poor doc has to be able to see my head.  The other issues with disability include being in more pain when it’s cold outside, and my joints just not liking getting in and out of the car.  Sounds wimpy.  Maybe it is.  All I know is that I have to manage it the best I can- so whatever I can get delivered to my door (Schwann’s frozen foods, Walmart for laundry and paper goods, Amazon for miscellaneous stuff, etc), I do.   It’s still very painful just grocery shopping for the dairy/fresh items, but it definitely helps to get stuff delivered when possible.  I’m thankful that those things are available.

Early January is rough for anniversaries.  January 7, 1978 my figure skating coach’s six kids were murdered by her then husband.  I was 14 years old, and it rocked me to the core. I can’t imagine how she has done.  I think about her often, and have always prayed that somehow she’s managed to have a life after that.  January 10, 1987, I was raped and ‘tortured’ (word the newspaper used- don’t want to sound overly dramatic on my own) for 6 hours when the uncle of a baby I took care of regularly lied his way into my apartment… he did things to me I’d never heard of, being very naive…and a virgin.  I’ve never let anybody get close to me since then.  I’d always thought I’d have a family of my own.  That day changed a lot- but I survived.  And I’m thankful for that.

In 1982, the semester that started in late January was a bad one.  I was in the midst of some serious eating disorder stuff, and the depression I only get when I’m starving and purging.  I ended up getting sent to a psych hospital (no eating disorder ‘treatment centers’ back then) for several months.  That was a bad year. I ended up attempting suicide the next semester when I returned to the university.  I was in a coma, and then shipped back to the psych hospital for many more months, once I woke up and was medically cleared.  Things weren’t done in a week to 10 days back then.  I spent about 8 months altogether at Forest Hospital (Des Plaines, IL) in 1982.  They were good to me; I did do better, but the eating disorders were on-again/off-again for decades.

This is the first winter since early 2010 (when I was diagnosed with acute promyelocytic leukemia) that I haven’t been on chemotherapy or waiting for the built up amounts of toxins to leave my body.  I’m still dealing with the weight gain and changes in my blood sugars and insulin doses, as chemo messed that all up.  The diabetes is getting better faster (great endocrinologist with a Joslin Diabetes Center affiliate here in town). I wasn’t on steroids long enough for that to be an issue- it’s ‘just’ the arsenic, tretinoin (ATRA), methotrexate, and M6Mercaptopurine.  They rearranged my chromosomes (literally…. they ‘re-translocated’ the arms of 15 and 17). I guess it will take some time to get my body back to ‘normal’.  I hate the weight.  I’ve had a long history of eating disorders, so can’t just do some crash diet and hope for the best- it could easily trigger a relapse that I just can’t afford.  But I’m going to turn 50 in late 2013; I don’t want to  look like this when I turn 50.  I didn’t want to look like this at all… but it was chemo or die.

And yet, I have a lot to be thankful for. I’m alive- that’s the big one; people with APL sometimes aren’t diagnosed until autopsy (and I know of 2 people just a few months ago who only had one and two days from the time they were told the diagnosis and the time they died; one was 11 years old).  I’ve survived being raped, and other stuff. And, with my health, I am glad to just have a day when I can get the basics done around here.  I’d like to be around people more, and am hoping to get to that Bible Study I’d mentioned in another post; last week (the first meeting of this topic- Ephesians) I wasn’t feeling well- that doesn’t mix well with indoor heat, even with my ice vest.  A childhood friend who I’ve reconnected with on FB came over one Saturday, and helped me with some generalized clutter (result of not being able to unpack after the last time I’d packed to move BACK to Texas), and is coming again- that has been a huge help.  I want to get this place puppy-proofed for the new puppy I hope to get this spring.  That helps, too.  I can’t imagine not having that hope for a new little companion to fill the dog-shaped hole in my heart.

2013 isn’t starting badly… just ‘complicated’ by past and present stuff mixing together.   There is still more good than bad.  I still have a lot of interests, and while I can’t physically do a lot, I do find things to keep me happy and make me laugh, especially online.  Blogging has been a great way to blow off steam, and some days that makes  a big difference.  🙂

Women’s Bible Study Starting Soon !

It’s been a long time since I’ve been around groups of people for anything except medical appointments and tests.  I’ve wanted to get involved in a women’s Bible study at the church I grew up at for a long time, and for whatever reasons, it just hasn’t panned out.  I recently checked the church’s website for Bible studies and found one starting in early January, and left a message with the person who I was directed to in order to register. Understandably, she’s been out for the holidays and the answering machine said she’d be returning calls later this next week.  No problem.  I had been a bit skeptical of getting registered as I’ve had some issues in the past with getting through to anybody.  BUT, someone I knew from my ‘old days’ at the church let me know via FaceBook that I was welcome to come- I could register that night.  I’m so happy !!  🙂

I had attended some services and singles’ groups when I first moved back here in late 2002 and early 2003, after 17 years in Texas, and it all felt so foreign.  It wasn’t the same place I remembered. All ages post-high school were in the singles’ group, and I felt really out of place.  One of the people I’d known before (who is a couple of years older than I am, but we still remembered each other) made an effort to contact me several times for various things involving the singles’ group, which I still greatly appreciate.  At the time, I was working evening hours, and also beginning to have some increased health problems that involve a severe heat intolerance, so I wasn’t able to join in and get to know the new routine.  Things got worse from a health standpoint, and I was pretty much out of luck.  I have been really bummed out, as my childhood through college years at that church left me with wonderful memories and a strong desire to fit in somewhere again.  I’m so glad that I got the ‘OK’ to join this Bible study on Ephesians. I already ordered the book from Amazon so I could check things out, and I’m really looking forward to the group study.  The book looks good !

I’m not a super ‘religious’ person, but my belief in God is strong and has gotten me through some really crazy (and scary) times, whether with chronic health issues, being attacked, or the more recent leukemia.  I consider my relationship with Christ to be the most important one in my life.  I don’t attend regular church services because of the heat intolerance, but still make decisions based on my Christian roots.  With the ice vest I have now, I’m looking forward to being able to at least be involved in some sort of fellowship and study group. I’ve missed that.  I’ve missed having some connection to other people since I’ve been on disability, and am looking forward to meeting new people there as well as seeing any of the people I knew growing up at that church.

I’m a bit nervous about ‘sticking out’.  The ice vest I wear is something that allows me to leave home for a couple of hours at a time (unless I bring the ‘refill’ inserts- but I only do that if I’m leaving town or going to be gone for many hours).  It does look a bit like a white bullet-proof vest- but it’s opened up so many things; without it, the Bible study would be out of the question.  I’ve had to cut my hair almost completely off  (though it’s grown; need another trim) because I literally can’t tolerate the heat of having hair. I already keep my thermostat at home set at about 64 in the winter, and no higher than 72 in the summer.  Outside of those parameters, and I’m in trouble.  When I get ‘in trouble’,  I pass out.  I don’t want to risk that around other people.  It’s a distraction for them, and I get sent to the ER, which I absolutely loathe.  So, I worry about being a pain in the butt for other people if something gets funky.  Because of that, I tend to avoid being around anybody but a very few people who know that I may have to leave in the middle of something.  With the ice vest, I’m anticipating things going well from the heat standpoint.

So, venturing out to join a Bible study means things on many levels.  The spiritual connection (and desire for growth) is obvious.  The social connection is something that I’ve missed so much since I have been on disability (since April 2004); no work has meant no ‘in person’ interaction with anybody on a regular basis.  I do talk to my dad daily, and see him… otherwise, doctors are the people I see the most, and I’m tired of them!  The emotional connection has many components, and includes testing my own anxieties about being away from my temperature-controlled environment, as well as looking kind of ‘off’ (hair, ice vest, my eyebrows never really grew back after the 19 months of chemo- and the weight gain after the whole chemo thing; I got the ‘fat’ chemo- the ‘skinny’ chemo was only the first week).  There’s even a physical aspect to going to a regularly scheduled activity.  I’ll have to get out of my pajamas, and walk around a very large church (it’s not a mega-church like has become popular in many places, but it’s plenty big!!). Walking will be painful, but it will be worth it.  I’ve really missed being involved in something ‘positive’.  I won’t ever be able to work again (and I miss nursing a lot), but if I can get out for a couple of hours each week to see other live human beings for the purpose of spiritual growth and human contact, it will be great !

So, the new year brings with it something specific to look forward to that is new, but also familiar as it’s a church I spent a LOT of time in.  It’s a good beginning.  I don’t believe that God is only found in buildings- but the connection with other people who believe the same things is a strong way to feel more grounded in my faith.  We’re not meant to fly through this life completely on auto-pilot (I tend to be a loner in general, so this is outside of my comfort zone, even though I’m looking forward to it).  With some adaptive equipment and finding a form of fellowship that works for me, I am thankful to be able to join in with the other women at my ‘old’ church.