The Disaster That Was 2016

I’m not in a good mood.  This year has sucked rocks.  I won’t go through the myriad of shootings, public riots, celebrity deaths, cop shootings,  “unarmed” shootings, local crime rate, racial tension,   blah, blah, blah.  All that does is make me dislike humans more intensely (and with the racial stuff, it’s usually the arrogant white folks that piss me off the most).   Since my dad died in April of 2016, I have had few interactions that I really cared to be a part of.   They were ‘mandatory’ or required to be just social ‘enough’.   If I tried to escape  I’d turn on the TV  just to hear about how horrifically humans were treating each other, and it just made me grieve for civilization.   Thank God there were enough interactions with a  few people that at least kept my head above water enough to breathe.   I’m very grateful for them.

The presidential election process further lowered my respect for humans in general (a few exceptions helped me not lose all hope).  One relationship ended because of the rabid and incessant postings of negativity about Obama…. get the hell over it- he was elected nearly eight years ago… MOVE ON.  I can’t stand the constant and so ‘wing-nut right’ rants.     I didn’t much like any of the candidates this year, but the options in the end were  almost unbearably bleak… one much more  than the other (imho), and that’s who we’re stuck with now.  It does warm my heart that he didn’t win the popular vote.  There’s a glimmer of sunshine there. Doesn’t matter who specifically won the popular vote, as long as it wasn’t the sociopath.   I’m grateful for that bit of hope.

Back to my dad.   He died on April 4th at 12:50 a.m.  He wasn’t ‘expected’ to die during that period of illness, and like my mom, he had been blown off when he complained about pain/had symptoms.  Don’t go to rehab hospitals where they have such narrow focus.  They try to fit all symptoms into the disorder they are treating.  Dad’s former (very sweet) lady friend of eight years went to the same place, and she called me to ask what she should do since they weren’t dealing with the fluid accumulation in her abdomen (she had cancer).  I told her to ask to go to the ER for an evaluation.  She did, and ended up having to have multiple ‘drainings’ of the fluid. But the facility didn’t come up with the idea to send her in for evaluation on their own- she had to ask.    I wish I’d been more astute with dad’s pain.  He wasn’t great at describing pain, but I feel bad that I didn’t see more.  I am extremely relieved that I was with him during those last 19 hours.  To have missed that would have killed me.  I made sure he knew I wasn’t leaving him before he went into a coma.  I promised not to leave him, and I didn’t .    But as an RN since 1985 (regardless of being disabled, I keep my license), I have constant ‘brain drain’ about what I should have done to help him more.  He was a great dad.  He didn’t deserve that much pain.  He deserved to be listened to and believed by the people who were supposed to be caring for him.

There was another ‘lady friend’ ( “B”) that dad hung out with socially for about a year before he died, and who was around  like flies at a picnic during the last month of his life. She encouraged him to be dependent, and robbed him of whatever independent activities he could do… which weren’t many.   She turned into more of a nightmare after he died.  She obviously had some intense delusions about the type of relationship she had with dad.  Dad truly  liked the companionship (and her billionaire son in law fascinated him- only thing he mentioned if someone asked if he was seeing someone- never mentioned her by name).  She liked “possession” of him (and had a total hissy fit when I told another one of dad’s lady friends she could put photos on the photo table at the visitation; it was a pathological reaction- they were. not. married.  I included as many of his special lady friends as I could find photos of) .  She also hurt me intensely after the funeral, complaining that she wasn’t mentioned by name ‘enough’ during HIS funeral.  She said her church friends all noticed it and that the pastor who did the service had it in for her since she wasn’t a member of dad’s church… that pastor hadn’t even worked at that church for a while… “B” was clueless and so friggin’ insecure and paranoid.  She wanted to know why I hadn’t consulted her about financial matters (like it’s her business- she was fishing for info, imho).  She also told me (dad’s daughter) that SHE would miss dad the most.  Seriously?   He was my DAD.   She was a 1.2% part of his life. That’s it.  Barely existed (would you miss 1.2 cents from a buck?)  She told me that dad didn’t like the one  lady friend (with photos, who he’d known since high school), and I knew that wasn’t true.  That’s when I started to see “B”  more clearly.  She fabricated things to make her feel like his lifelong love… well, she missed that train when mom married him, and then the wonderful lady he saw for eight years after mom died.  I’d lost my dad, and she was ragging on about all sorts of stuff.  Sure, I knew she’d miss him.  But her degree of histrionics was exhausting and painful.  “B” was creepy- saying that she saw him looking back at her when she put his glasses on her kitchen table (she had a mild conniption at the visitation about when dad’s glasses were going to be taken off… I told her to take them just to shut her up).  I do hope she’s well ( and well away from me).  I pray that her macular degeneration is stable, and not getting worse.  And I want nothing to do with her.  I had to have the garage door opener codes changed because she refused to give me back the one she was last known to have.  I added keyless deadbolts.   When I think of her now, I wonder about her DSM-V diagnoses.   And I still wish her well.

I’ve been contacted via greeting cards by two of my deceased mom’s siblings who made sure I was excluded as ‘family’ while they manipulated and dismantled my late grandmother’s trust (grandma was spineless when it came to standing up for what was fair… she got bullied and she folded) . It was mangled after my mom died, and the surviving siblings kept ensuring they profited off of their dead siblings each time one of them died.   Once someone writes me off, it’s over.   I don’t want to  be reminded of their existence with hypocritical cards.   Either I’m part of the family, or not.  Can’t have both.  They deleted me based on lies they KNEW were lies.  That’s what gets me the most.  Screw the money.  I’d settle for truth – but that bunch is incapable.  Leifheit Logic in that generation has been sketchy at best for decades.    My mom was in that generation, and her biggest ‘flaw’ in regards to logic was keeping her marriage vows and having strong faith… maybe they resented her for that… ?  .    Hard to tell with narcissists. I do know that I want nothing to do with them.   They ‘cancelled’ my family ‘membership’ – and that’s just fine.  But be done with it already.   GO AWAY, even via mail.   I am thankful that the six cousins I have from the other ‘discarded’ sibling understand that we’re worth nothing to the greed-mongers.  I didn’t even tell mom’s surviving siblings  when dad died; they found out on Facebook…  never occurred to me to consider them part of the family to notify.  They dumped me about 5 months earlier.  It wasn’t even an issue in my mind/life.

I’m going in to 2017 with a questionable mass on my neck.  I have a CT scan scheduled for a week from tomorrow.  The hope is that it’s just a lipoma (nothing major), but with my crazy medical history, including a LOT of chemo for leukemia, there is always a  question about more cancer.  Chemo can cause cancer (isn’t that special?) .    It has no doubt contributed to the increase in peripheral neuropathy (including the dysautonomia/POTS).  But without it, I would have been dead in 2010.  Pain is more intense now, including the degenerative disc and joint disease.   I see a new chiropractor next week to hopefully put my neck ‘back in place’.  But, I’m alive.  That is still worth it.

I know I have a lot to be thankful for.  That isn’t lost on me by a long shot.  But like anybody I still have my bad days, and today is a really lousy one.   Next year, I MUST lose weight.  I need to do all I can to avoid future joint replacements and minimize joint and disc pain.   I have to get more focused on keeping track of carbohydrates and insulin requirements.   Right now, my blood sugars are very unstable.  Stress isn’t helping that.   But I’ve got my dog.  She is always happy to be around me, and I’m so thankful for her.

Mostly, I’m thankful for God.  That is my ‘Constant’ and my Hope.  I don’t generally find organized religion to be satisfying, but I do love the Lord.  Call it what you want if you don’t believe… for me , my faith is the only thing that keeps me going.   I know that this life is temporary, and that after this earth, it’s all good.   I don’t like the politics of Christians.   I aim to be more compassionate than the judging and ‘dismissing’ of entire groups of people – and I’m not unaware that my feelings about that are also judging and dismissing (I’m working on that).  And, I still love God more than any human I’ve ever met.  Fortunately, I had a  great earthly father to show me a small example of what a Heavenly Father feels for His children.   When this earth and its people depress me, I remember God.  He has this all in control.   I don’t have to worry about any of the mess going on… in the end, good wins.   I don’t have to worry about what others do, or use them as political pawns.  I only answer for what I do.  When there’s nobody to talk to, God is always there.   No matter what, God is my refuge and joy.  He is what makes tolerating this earth bearable.   I know it’s all going to be OK one day.  Maybe not soon, or maybe tomorrow. It doesn’t matter when.    He wins every time.    And I know that HE  alone can help me see things in a way that is less painful.  HE can remind me of the good that is already here.   I don’t think I’d be able to function if I didn’t have that hope and assurance.

Feeling My Body Fail

This has been a rough six months on top of a weird twenty years.  I’d learned to deal with diabetes, fibromyalgia, chronic pain, degenerative disc disease, nocturnal seizures (left temporal), degenerative joint disease, GERD, and the temporary effects of acute disorders like multiple pulmonary emboli (all three lobes of my right lung and right pulmonary artery), and acute promyelocytic leukemia (APL), or acute myelocytic leukemia- subtype M-3.   The longterm effects of chemo have been rough and more noticeable  in the last few months, and the thought at this time is that much (not all)  of what has been going on recently is a combination of chemo effects, and  the progressive nature of diabetes (even with good control, though chemo totally ripped my blood sugars to shreds).  I had chemo DAILY for 20 months (ATRA – all trans retinoic acid, M6 mercaptopurine, arsenic, methotrexate, and initially daunarubicin, ara-C, and assorted meds for nausea, fluid retention, and protective eye drops.  I was also on gentamicin and vancomycin for most of six weeks.  I think that things are just catching up.

This summer, a lot started to happen at once.  The GERD (reflux) got really bad, so I was sent to a gastroenterologist (GI) for some testing.  Most of those tests turned out relatively OK (to a cancer survivor, that means nothing malignant… something could be rotting and ready to fall off of my body, but if it’s not cancer, it’s pretty much OK).  I have chronic gastritis (so no more NSAIDs – or ibuprofen type meds which is a bummer for pain management), and some irritation in my esophagus, and I was supposed to have a gastric emptying test (related to gastroparesis- a diabetes complication, but because of pain, I can’t lie on my back as long as is required…. and if I burp yesterday’s lunch in the morning, that tells me something isn’t moving).  I tried to have the esophageal manometry test done last week, but SURPRISE !!!  I couldn’t swallow the tube !   I’m being tested for swallowing problems.  Now, I have to be knocked out, and have the tube put in under anesthesia, woken up, then swallow water 10-12 times, then have the tube pulled out).   I’ve had to eliminate a few foods/food groups, but that’s OK.   Marinara sauce, chili, fried foods, ‘high volume’ foods (like full meals), and some other things are out of the picture for the GERD. I cheat once in a while, but have to have Tums and Gas-X available.   For the swallowing issues, dry foods, meat without ‘lube’ (sauce, gravy, stewed), celery, hard breads, rice without some type of moisture, etc are out.  I literally have to pull the food out of my throat before inhaling when something gets stuck.  I keep 8-inch curved hemostats next to where I eat. It’s rather scary.

The pain.  Oy.  I don’t remember ‘pain free’.  I’d gotten used to just dealing with it, but this summer, the neuropathic pain got very noticeable, and the burning pain along my right outer thigh got really bad at night.  Now both of my feet burn at night- though neither of them are every night.  The sensation during the day along my right leg is weird.  If I stand too long, I feel like my leg will give out.  I got a wheelchair last week, and the one time I have used it so far (only need it away from home at this point) has been very helpful.  I’m going to have to use the scooter at the grocery store from now on, and not have a three-day recovery period every month when I go to do my main shopping. I’ve got a few volunteers who have agreed/offered to come with me to push the larger cart.  It’s just too much now to do monthly shopping.  The pain management  doctor (board certified in pain management, and ‘legit’… no lines around the block, no shady characters in the waiting room, and lots of rules about how he does things that I respect) said that if the methadone doesn’t work, then the next step is a peripheral nerve stimulator… kind of like  a pacemaker device implanted under my skin that sends out little zings to trick how my body perceives pain. (BTW, methadone is a legitimate pain med, not just used for exchanging it for heroin in drug addicts).    I am usually pretty tough during diagnostic tests, and have had many, many MRIs over the years, but this summer I had to bail before the “with” contrast part was done.  I was in tears just getting the “without” part done.

I did get through the EMG (done at my neurologist’s office, by her), which clarified that it’s a progressive sensory peripheral neuropathy… it’s gonna get worse.  The implications are kind of scary. I’m already noticing some altered sensation in my hands- so being in the kitchen is a little dicey (pun intended).  And, if I lose sensation in my right foot, driving will be out of the question.  Right now, I have enough sensation- and I don’t drive much, so it’s OK for now.   A couple of weeks ago, I was opening a box of stuff I’d ordered (monthly Amazon or Walmart supplies) and I didn’t feel the inner angle of the scissors ‘catching’ part of the ‘pad’ of  my right thumb… and it got cut off (about the size of a pencil eraser- and completely cut off about 1mm deep).  :/   That was pretty sore for a while.  It’s still not completely healed, but much better.  I’m going to have to pay much more attention to hands and feet.  The decrease in sensation means that I could whack something off, get an infection, and end up with an amputation (pretty common in diabetics).   ‘Help’ aids for opening jars, buying pre-cut veggies at the store, etc are going to be things to consider.  I got one jar opening thingie, and it was useless…. it fit around the tops of many sized jars, but without the strength to hold the jar in my left hand, it’s pointless.   I can still do the vacuum release move with an old cheesy can opener, and then get the lids off- at least for now.

My blood sugars were also getting wonky again so it was back to the endocrinologist. She wanted me to try a new type of long-acting insulin- but as usual, I had to check my Medicare plan D formulary to see if it was covered, and at what ‘tier’ for copay purposes… this year, it’s not good; next year I can get it !!  I’m so excited to be able to get a type of insulin that wasn’t popular in the 70s !!  She got me enough samples to get through until January 1st, which brought me to tears.  The short acting insulin is also going to be doable next year- and she got me samples of those as well !!    It requires me to pay three times more for my monthly premium next year, but it’s SO worth it for no deductible, full donut-hole coverage, and good monthly copays for each medication (I’m on something like 15 prescription meds and many over the counter meds that are always out of pocket).

Then there are the changes in the symptoms with the autonomic neuropathy /dysautonomia.  I was sent to a cardiologist (I’ve been trying to cut down on the number of docs I see, and that plan isn’t working well).  Because of multiple medication changes for my blood pressure meds (which is actually used to keep my blood pressure UP in a paradoxical way), and my blood pressure going down far enough for long enough to decrease blood flow to my kidneys ( that was ‘fixed’ with medication changes and more deliberate fluid intake), I needed someone to take a look at what is going on.  Dialysis has always been ‘the’ diabetic complication that I’m not sure I’d get treatment for; a machine 3 times a week indefinitely doesn’t sound like quality of life to me.  Anyway, the cardiologist sent me for a simple ultrasound of my heart (ECHO) and did a simple EKG.  No results on the ECHO yet.  She adjusted a couple of meds, and the next step is to add another med, which I do NOT want.   I’ve had a LOT of episodes of near syncope and increased heart rate (not necessarily at the same time, but if my heart rate stays up, I generally pass out because it will suddenly drop; I have to get home and get my feet up or just go to bed – which usually takes care of it).

So, I’ve seen my primary care doc, gastroenterologist, pain management doc, neurologist, endocrinologist, and cardiologist since this summer.  I do not like doctors’ appointments.  Leaving home is painful.  They usually want to order tests, which means more time away from home.   I appreciate their help (though the GI situation is horrible to get anything done; right now, I’m waiting to get the anesthesia assisted tube placement to measure esophageal spasms -achalasia is suspected-, and they have a very blasé attitude, even when I’m pulling food out of my throat because it won’t go down).   I need to get things treated to the point of maintaining independence as much as possible.  And, I’m going to have to suck it up and ask for help when needed.   That is hard, since most of my friends are 1200 miles away… or have lives/families/jobs/etc.   And I don’t like to be ‘dependent’.

I know I have a lot to be thankful for.  I’m still in my own apartment.  I still have my dog.  My dad is around (he’s 83, and has a full life; he’d help but the ongoing commentary at the grocery store for a full month’s shopping would be too much- he doesn’t shop for more than a few days since he eats out a lot), and he is a huge part of my life.  I have a lot of online friends and family.   I’ve got family in other states that I’m in contact with.  There’s a lot of good.   But it’s hard to see things changing.  Fortunately, as an RN- disabled, but still have my license- I know what to look for, and know what types of ‘help’ devices are out there.   I know when to ask my doc for things like the wheelchair.    I’ve got some word-finding issues, but my brain seems to be mostly intact- LOL.  😀   Always stuff to be thankful for 🙂

 

Sometimes Being Homebound and Isolated is Really Hard

Considering what has gone on with three people who have been very important in my life this year (they died), I have to know that I’m very fortunate.  Two had battles with horrible cancers between 9 and 10 months long, and one had a sudden collapse with an aortic dissection, but lived two more days…. she had been over a few weeks earlier talking about limited time. Maybe she know something was up, or was just being realistic that at 89 years old, she wanted to get things in order.   We had a really nice visit that I’m so thankful for.  The one who had the 9 month battle with colon cancer is a cousin I had a lot of  phone and e-mail contact with during her horrific struggle.  The other was my dad’s lady friend from church;she and  his first cousin (with the aortic dissection) had services last week.  I wasn’t able to go to either, but did at least meet the lady friend’s family, who I’d heard about for years, and felt a need to pay respects to them; we’d all heard about each other for years. I couldn’t stay long, but at least I popped in after the service for a few minutes.  I will miss them especially during the holidays, but also in general, as they were either family, or just about, as she and dad were buddies for church dinners, going out with friends, etc.

Overall, I really do realize how fortunate I am, but I don’t have many perky days when all is sunny and wonderful. There are some times when I just get overwhelmed when I think about what I used to be like.  Other days, I do my best to get by, and I do still have a lot that I enjoy from home. I still get to help out family and friends with medical  questions/translations- and I’m very glad to do that.  It helps me feel useful in some way.  And I get rather nostalgic about the days when I was working 3 12-hour shifts a week as a charge nurse in some sort of facility (hospital, drug/alcohol rehab, adolescent psych), or the Monday-Friday desk jobs entering assessment data into the computer for Medicare reimbursement and/or care planning for skilled nursing facilities.  I also did some stints on neuro floors, head injury rehab, and pediatrics- so a greatly varied career that I miss.  A great thing about nursing, especially in Central, rural Texas between 1985 – 2002, is that when I’d get bored with something, I had no problem finding another job within days.  Sometimes the offers were waiting for me on my answering machine when I got home from the interview.  Being an ADN, and not having a 4-year degree was never an issue, either as a staff nurse, charge nurse, weekend supervisor (only RN in the building/facility), or department head.  I was lucky to graduate from nursing school in 1985 when we were expected to know how to do procedures and skills, or we didn’t graduate.

Then came disability in 2004.  I fought through 8 years (starting in Texas) of trying different medications to regulate the fainting and weird episodes where I turn beet red, then a bluish red, before becoming pale and cold like a corpse. For eight years, I muddled through, and even had several decent years after the neurologist down there wanted to try an off-label medication.  By the time I was told I was no longer OK to work (by my boss in IL in 2004), it crushed me.  My identity had always been as an RN.  I didn’t have a husband or kids, so no other roles.  My relationships were all with co-workers in Texas ( even though I’d moved back to Illinois, where I was basically thrown away- nobody returned calls, and one former coworker went out of her way to avoid me at the grocery store).  I’d gotten sick- I hadn’t embezzled anything !  I guess it’s a Yankee thing. :/

That started some very chaotic years of figuring out what meds would help with the worsening symptoms (fainting more often, with some injuries including a concussion, and torn meniscus on my right knee requiring a knee replacement, some very strange medication interactions that caused a small stroke, many blood clots in my right lung, and ultimately leukemia (AML, subtype 3, or APL) which required chemo that worsened the autonomic disorder with thigh atrophy and increased sensitivity to heat).  I was a ‘regular’ at one of the ERs early on, and they treated me like trash.  Had I not gone to a decent ER with the blood clots in my lungs, I likely would have died – they were numerous in all three lobes of my right lung and pulmonary artery, and in various acute, subacute, and chronic stages.  The apex of my heart had pressure against it from my lung pushing into it.  It was bad. I only went to the hospital because I thought I was having a heart attack.

I’ve been essentially homebound for ten years.  I’m not sure that many people really understand what that means when “friends” here (coworkers) disappeared as soon as I left the parking lot on my last day.  I do have my dad, and a couple of friends here- one in particular makes an effort to come over periodically, and has done a LOT of work helping me get things organized so that I can get “stuff” minimized around here. She has been incredibly helpful once we found each other again on FB a few years ago.  I have been invited to family holiday parties- which I can attend one of, after everyone eats, since hot food in close proximity to body heat of other people is a problem- so I go when I’m less likely to stick out as being totally weird.  I really like that family bunch, and I hope I don’t come across as not liking them.  I just can’t tolerate a room over 66 degrees.

There are days when I don’t hear another human voice other than my dad (who is 82 and healthy, so I’m very thankful for that). We try to do daily “attendance” checks with each other, and he is really a huge asset in my life for many reasons… he always has my back.  I know he will never give me bad advice.   I might not see another human more than once a week (again, dad) for a few weeks at a time.  The phone rarely rings… usually it’s dad, my birth mom, or a reminder for  a doctors’ appointment or test (this week it’s an abdominal/pelvic CT for some intense bloating likely related to the autonomic problem).  Facebook is my primary form of contact, and I’m incredibly grateful for that; prior to getting this laptop from my birth mom and cousin, I was even more alone… now I can at least keep up with people I’ve known for years, whether from work, family, or childhood.   I challenge anyone to unplug the phone, have nobody show up at their door, and not hear another live voice in person for days (and occasionally weeks) at a time. It takes getting used to- and even now, it’s still hard.

I miss seeing co-workers and patients.  I miss being able to just go out and do something social without having to deal with the logistics of cooling vest equipment, distance from home, how I’m going to get there, can I leave if I need to, etc.  There are no ‘going out to lunch’ days (who would I go with?).  My dad is the one I go places with on the days when I can go (and I know I’m the most undependable ‘date’ with frequent last minute cancellations because of symptoms of some sort).  He knows that when my cheeks turn a deep bluish-red that it’s time to go.  And he’s always willing to take me anywhere.

People don’t understand that I can’t unload the dishwasher and fold laundry in the same day, or I end up with spasms from the base of my skull to my lower back, and am useless for a day or two.  Chronic pain isn’t ‘seen’.  Fibromyalgia and degenerative disc disease are chronic and  the DDD, will get worse (degenerative is a clue)- so I pace what I do as much as possible.  I miss the days when I’d set my mind to doing something around my apartment, and not stop until it was done.  That’s long gone.  I ‘look OK’, so I’m not sure people understand that I really am doing the best I can.  I live independently (getting many things delivered to my apartment from Schwan’s- frozen foods, Amazon, and Walmart).  I go to the store about once a month… maybe twice if it’s a good week about halfway between disability checks.   I still want to do as much as I can myself, so I don’t lose any more muscle mass.  The initial chemo took up about 20 pounds of muscle, and then the neuropathy in my thighs took much more – while I gained weight on chemo (not easy for my head to deal with, or to get rid of the poundage).

I’ve written about the expenses of Medicare and medications not covered in other posts. Buying insulin from a part D plan guarantees that anyone on it will go into the dreaded ‘donut hole’ where meds are NOT covered by the Medicare drug plans.  Most diabetics are on several medications.  The donut hole is dangerous.   The ‘good’ insulin is upwards of $200 per vial….between the two types of insulin I use , if I got it from the part D company, that would be $600 a month just for that- minimum… Thank God for the  cheap stuff from Walmart; I’d be sunk without it.  I don’t understand why insulin (the better stuff ) – a drug that is absolutely necessary for many diabetics- is so  unattainable.   I worry about this sort of stuff…

But mostly, I miss the things that I used to take for granted… seeing coworkers, having daily contact with other humans, having a purpose that felt like ‘me’ (being an RN), and not having to plan for every contingency every time I leave the apartment, even if it’s only for an hour.   My short term memory and word-finding are still not back to normal after chemo.   Going to the store for fresh produce every week has been long gone.  I might figure out something with dad, to go with him a couple of times  a week to get fresh fruit and veggies.

I really do have a LOT to be thankful for.  I have survived a lot.  During my 55 year old cousin’s final weeks, she weakly asked why I was allowed to live and she wasn’t- not in a nasty way, but in a tone that just sounded like she was trying to make sense of things.   I don’t know.  I know I must have some reason to still be here.  I hope I can make a difference somehow.  The blog helps… I keep track of my stats, and more than 100 countries have hit more than 16, 000 times.  At least people know I’m still here… that and Facebook. And my dad and a couple of people I see every month or two.  That they take time out of their busy lives (and they are busy !!) means a lot.

I’ve got God, my dad, my birth mom, folks on FB, and my dog- who is my main companion and pretty good at it 🙂   So, even though I miss what my life was, I’m at least alive, and still able to live alone, and figure out how to get things I need.   I truly am thankful for that. I know that there are others out there who struggle a lot more.  I remember those people I used to take care of that were never going to live on their own again.  I don’t know where the dysautonomia, diabetes, degenerative disc disease, degenerative  joint disease, or lung scars from the clots are going to lead me… but I’m sure I’ll figure it out.  I always seem to land on my feet 😉

Blowing Off Steam About Love and Respect

I need to blow off some steam. Some stuff has been bugging me for a while.  And in some ways, even writing this is making me guilty of what I am so deeply saddened and frustrated by.  For that, I ask God to search my heart for my core beliefs and motives,  that can be so hard to describe in words.  I hope I make sense with this and come from a place that pleases Him.

I’m a fairly conservative Christian,  though I don’t consider myself to be an ‘extremist’ – I don’t believe extremism is beneficial for anything. (Matthew 6:1…”Be careful not to do your ‘acts of righteousness’ before men, to be seen by them. If you do, you will have no reward from your Father in Heaven.”… ‘Appearances’, and not compassion, scream hypocrisy, and push people away from us- and the chance to share Jesus….Matthew 5:22 talks about anger, and the emotions that destroy relationships and spirituality – we’re to be in control of our actions, but our thoughts can also degrade our relationships spiritually… Life Application Bible notes).

It’s one thing to have a firm belief in God and His Word, and quite another to use it as a weapon against those who are either struggling, or have different beliefs- or are not Believers at all.   Nothing about God is  a weapon for destruction.  We’re instructed that our relationship with God is to be used for GOOD, not divisiveness.  Divisiveness is a tool of Satan.  James 3:5 “Likewise, consider the tongue as a small part of the body, but it makes great boasts. Consider what a great forest is set on fire by a small spark. The tongue is also a fire, a world of evil among the parts of the body.  It corrupts the whole person, sets the whole course of his life on fire, and is itself set on fire by hell.”  And it can be incredibly difficult to figure out how to love the sinner and hate the sin, and do it from a place of love and compassion for the person, without being judgmental.

Every week there is something else in the media (not from God) that turns on the “judgement switch” of a lot of Christians… and that’s not our job as Christians. I see it in people I know,  people I don’t know in articles and interviews, and I see it in myself at times, and must stop and ask God to help me deal with the situation in a way that pleases Him. I’m not always very good at that.  Every time ‘WE’ judge ‘the other side’, we do *exactly* what we accuse ‘them’ of doing.  I’m so tired of it!  I strongly believe in having a solid core belief system, and mine happens to be that of a conservative Christian. My goal from my heart is that  I become stronger with the  characteristics of a Biblical Christian (not humanly manufactured judgement spewers).   Living the Fruit of the Spirit is my daily goal (and I fail regularly)  😦  … Galatians 5:22… “But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. Against such things there is no law.”  When I disagree with someone, or feel I’m not being heard or treated fairly, those are the responses I am to have.  And it ain’t easy!

I have enough of my own character defects to work on to have ANY right to call out someone else.  Even if something is in the Bible as sin (and we are ALL sinners), I can only live and grow my own relationship with Jesus.  Even Jesus didn’t come to point fingers and judge- He came to save us; judgement will come at its due time, only known by God.   If Christians are so busy worrying about the actions/thoughts/beliefs of someone else, who is left to love them to the Lord?  Matthew 7 is a great chapter on judgement and forgiveness.

We have all sinned (Romans 3:23).  There is no hierarchy of sin.    I believe we  ALL need Jesus- every single day for our OWN spiritual lives. I understand that not everybody believes that- and God gave us free will to believe or not, so who am I to demand more than God? He wants genuine believers- not robotic, loveless stalkers!   We are commanded to go into the world and spread the word of God… How can we do that if we’re so busy condemning others?  Romans 12:18… “If it is possible, as far as it depends on you, live at peace with everyone.”   Salvation, and a relationship with God is a choice- we can’t earn it, we can’t lose it… but we must sincerely desire and choose it.  And I can only choose for myself.

Does that mean we condone everything? Of course not !  But we aren’t responsible for the actions and beliefs of others- and if we’re so busy being pious and judgmental, who is left to share the Gospel?  We are known by our actions first.  And there are many Christians who send non-believers running for the hills from the hypocrisy and absolute intolerance of various groups of people, or those who even believe differently. Some send ME running for the ‘hills’, and we’re supposed to believe the same thing !
There is not one person on this planet who can truly know what is in the heart of someone else- their struggles, pain, frustrations, BELIEFS, etc.  Christians are generally taught to appear like everything is wonderful- which is VERY hard to do 24/7.  And it’s disingenuous.  God gave us emotions.  But we do have to be careful about not directing them AT others, and instead using them to encourage and uplift others.   ‘Loathing’ is not from God.  Constant mockery, negative comments, and complaining are in direct contrast to what we are told to do in Philippians 2: 14-16… “Do everything without complaining or arguing, so that you may become blameless and pure, children of God , without fault in a crooked and depraved generation, in which you shine like stars in the universe as you hold out the Word of Life- in order that I may boast on the day of Christ that I did not run or labor for nothing.”  That’s hard !  But it lets me know that getting involved in negative ‘conversations’ isn’t anything I’m doing to praise God.  It’s purely self-serving when it’s not done out of love, and to offer something positive and encouraging.
I believe that there are a lot of Christians who truly love the Lord, and are still struggling with various issues.  When I worked drug and alcohol rehab, we saw a LOT of Christians… and had a special sub-group of recovery options for them in addition to the traditional  12-step treatment (which is completely spiritually based, and strongly reflective of the Sermon on The Mount).  Christians are not immune from continuing to (or starting another)  sin; for some it’s easier than other to ‘reform’ and/or recover. Some have condemned themselves much more than anybody else could- and are afraid God couldn’t possibly want anything to do with them. (So let’s throw some disdain their way, eh?) And some have lived their entire lives believing that they are guilty of something that was done TO them.
I’m so glad that the  God I know is more loving and forgiving than many of my fellow Christians- known personally or not. And HE knows MY heart!  He has access to the secret corners of my being, and loves me anyway!     Other humans only know what they assume- and that is dangerous ground for basing a relationship (or opinion) with anybody.   John 8: 2-11 is an outstanding example of how Jesus dealt with a woman accused of sexual sins.  He came from a place of love.
I spent many years with severe eating disorders –  clear abuse of the body God gave me, and where the Bible says the Holy Spirit dwells in Christians.  I was living in a state of daily sin by focusing on the flesh– and yet I still loved God deeply, and dealt with the shame of not living fully for Him when I was focused on something so destructive, and felt so stuck.  It’s painful to see Christians assume that because someone is ‘pro’ this or that, or in some sort of addiction (food, drugs, alcohol, etc.)  that they aren’t Believers.  “Let he who is without sin cast the first stone”… remember that one?   I’ve met a lot of Christian addicts (recovering, and  just going through detox)… some of the most solid Christians I’ve ever met.   Being a Christian never removes the fact that we’re still human.  We fail. We get up. We move on. And sometimes (a lot of times) we fail again, with the assurance of a loving God catching us in His arms.
Some (a lot of ? ) folks do appear to be clearly anti-Christian.  There’s someone on the news, other TV shows, radio, Facebook, Twitter, etc.  pretty much daily that come  only to verbally mock and shun Christians.  (one program last night had me fairly heated !). God has that covered !  We’ve been told about those who persecute Christians- it’s been going on for a couple of thousands of years now !   And it’s not our fight.  God will take care of those who harass His Children in due time.  I find comfort in that- I don’t have to waste time being angry or even hateful !  I can try and find things to be thankful for.  We’re instructed to be thankful in ALL things.  We’re instructed to have a very specific mindset about our ‘enemies’. ****  It is so much more freeing to not be worn down by things that I have no control over, that will be dealt with by God in HIS timing, and to look at the wonderful things I’ve been blessed with- however great or small… they are more uplifting than the negative people and situations :
****1 Peter 3:9…” Do not repay evil with evil, or insult with insult, but with blessing, because to this you were called so that you may inherit a blessing.”  
Matthew 5:44… “But I command you all, love your enemies and pray for your persecutors.”
Romans 12:14… “Invoke blessings on your persecutors, blessings- not curses.”
1 Peter 3:15…”But in your hearts, set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect, keeping a clear conscience, so that those who speak maliciously against your good behavior in Christ may be ashamed of their slander.  It is better, if it is God’s will, to suffer for doing good than for evil.”    Hmm… ‘in your hearts’ (don’t need a billboard).  Gentleness and respect…. (wow- don’t see much of that).  Is it good or evil to single out assorted ‘hot topics’ and make them a thermometer of morality and gauge of someone else’s heart?  Or would it be more in keeping with Jesus, being the definition of love, to reach out and show compassion?  I don’t have to agree with anybody to  be kind to them.
I can anticipate some who read this getting upset that I’m not focusing on pointing out  specific ‘hot topic’  sins of others  that they feel are clearly stated in the Bible.  I’m really not interested in pointing out someone else’s sin nearly as much as I am showing them the love that Jesus came to show us; the Holy Spirit  will convict someone of sin- I’m not that powerful, so why not show love and compassion?  I’m not always good at it- but that is my goal.   When anything comes across as hate, it will drive someone away who God loves, and wants a relationship with.  That’s not being obedient.  I don’t have to change my beliefs to show someone else what I believe- and I don’t have to do it with condescension or spite.  Neither of those are from God.  I don’t have to jump on every bandwagon that comes along to ‘prove a point’.  I know what I believe… I don’t have to repeatedly and frequently drive the point into the skulls of anyone I encounter.  My friends know what I believe, and IF someone asks me, I will aim for the gentle and respectful explanation.  🙂
Sometimes, there are people who will only know one or two ‘known’ Christians… do you want to show someone the love of God, or tear them down by talking about specific sins?  We are all sinners, and Jesus came for all of us.  There are no prerequisites for loving Jesus.  He takes us as we are.  All of us.  As. We. Are.  The miracles of being new creations happens after someone discovers Jesus, and the ultimate meaning of love.
So, what is my hope that I show people?  It’s very clear…  🙂  And it’s an ongoing process.  So, I’m really not at liberty to judge someone else.  I’ve got my own work to do.
I Corinthians 13:4-8a….”Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no records of wrongs. Love does not delight in evil, but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.
I wish everyone a very Merry Christmas, and New Year filled with peace, compassion, and joy of knowing that God supplies all of our needs.

 

 

 

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.

 

 

The Death of My Best Friend…Who Waits at The Rainbow Bridge

At 2:45 p.m. today (December 27, 2012), my best friend and amazing dog Mandy died in my arms.  About 15 minutes earlier, she had been lying on her ‘TV bed’ and made a sound that was similar to those she made when she’d faint, but not as loud and only one time (instead of the usual three deep, agonized moans). I immediately went to check on her, and she was semi-conscious.  I picked her up and she began to wake up, ears perky, and  looking at me. But something wasn’t right- normally when she started to wake up, she ‘came to’ quickly and was on her feet and steady. She did go over to her pee pads and peed, but she wouldn’t leave that area- she just kind of froze standing up. So I picked her up and brought her to my recliner, to hold her and see if she’d perk up.  I decided to get her onto her comforter with a disposable underpad beneath it (she has had ‘issues’ with bodily functions after fainting).  By then, she wasn’t able to support herself on the floor, so I laid her on her recliner as I got her situated (yes, the dog had her own recliner).  I picked her up to hold her  on my lap and see what was next.  She again picked her head up, but then essentially collapsed, and began some slow, agonizing breaths that became slower and slower until they stopped altogether.  I checked her heart rate with my stethoscope. There was silence. The entire process took about fifteen minutes as she died in my arms.

I’m extremely thankful that she didn’t have any prolonged suffering; just this morning she was looking at me and wanting her Charlee Bear dog treats (which she got), and eating Swedish meatballs (microwaved and low salt, just for her).  I’m extremely grateful that she was in my arms, and not alone or afraid. She just relaxed into my lap and let go. I told her she’d been an amazing friend and dog, and that I loved her more than I could ever make her understand, and that it was OK to stop fighting the heart failure.  I knew it had been hard for her for a couple of weeks, but she had been so alert and interested in what was going on, and had still been eating (though becoming very picky).  I’m so thankful that she took the reins, and it was fast.  I had agonized with the decision to put her to sleep last week, but unlike my last dog, the signs weren’t  so clear.  Mandy was still invested in life…until she wasn’t.  The end left no questions.

I’d called my dad when I noticed something wasn’t right, and he came over as fast as he could- thinking at best we’d be taking her to the vet to be put to sleep if she was still ‘not right’, or at worst to the animal crematorium.  I also called my birth-mother. She’s been keeping up with the gradual decline. Mandy  was ‘gone’ when dad got here, which was OK, since it gave me a few moments alone with her during that time when everything changes and the order of my world began the process of adapting to the void left behind without her.  I know it’s a process, and that I’ll be a mess on and off for a while.  I’ll miss her for a long time, just as I still miss the one before her, and the one before her.

I can’t explain in human words how much I loved that dog.  There is no ‘dog-language’ to explain how important she was as the one living thing I saw more than anybody else. Being home 24/7 about %98 of the time, she was my sole companion and closest friend.  All I could do was to do all I could do, and I did. I have no regrets about the level of treatment for her congestive heart failure. I have no regrets about letting her lead the way as far as when she was ‘done’ (and she was quite decisive 🙂 ).   I only know that there’s a hole in my heart left by her absence that will be raw for a while.  I know I’ll get another dog, though none of my dogs have ever replaced her predecessor. They just grew in my heart in their own way.

Thanks to the vets and staff at the Mulford Animal Hospital in Rockford, IL.  You have been so caring, and kind.

Mandy Bluebonnet Tumbleweed- my forever friend, who never let me down and always lifted me up. ❤

Mandy Bluebonnet TumbleweedMar. 28, 2001- Dec. 27, 2012

Mandy Bluebonnet Tumbleweed
Mar. 28, 2001- Dec. 27, 2012

 

"Mandy