The Only Place I Can Write This…

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

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

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

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

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

Shelby and Shiloh
Christmas 2017

Diabetic Inconveniences and Insulin Shots

I’m back to measuring everything I eat.  My blood sugars have been completely out of control since starting chemotherapy in April 2010.  The initial chemo didn’t seem to have the impact that the 50 doses of arsenic, and then the year of tretinoin, methotrexate, and M6 mercaptopurine had.  Those really messed things up.  This morning my ‘fasting’ blood sugar was 161 mg/dl. That is beyond unacceptable, and I’ve been off of all chemo for roughly 11 months.

Before the leukemia my blood sugars were those of someone without diabetes- but that doesn’t mean I wasn’t diabetic.  My diabetes was just in control.  Diabetes doesn’t go away; it gets controlled.  For 12 years I didn’t take any medications at all. I went from an A1C of 10.2 at diagnosis (random blood sugar was 389 mg/dl) to an A1C of 4.7 and fasting blood sugars between 65-85mg/dl about %95 of the time; rarely over 100 in the morning.  Even when my A1Cs started to rise and I started on metformin my numbers were still doing OK- but I saw that they were starting to go up, and asked to do something before they got ‘bad’.  I didn’t want to wait until things were in a higher risk range.  Proactive, not reactive.

The metformin ate my stomach. I couldn’t keep taking it, so I was started on Lantus (long-acting) and NovoLog (rapid acting, for right before eating) insulins.  My numbers went back to where they had been almost immediately.  I could see my risk for blindness, amputations, and dialysis going away. That was my whole point for starting insulin.  Keep the risk for complications as close to nil as possible.  I already have an autonomic nervous system disorder, so didn’t want that getting worse.  And it has since my blood sugars have been out of control.  I don’t know for sure if there’s any correlation (it could ‘just’ be progressing), but I don’t want it to keep going in the wrong direction if there’s something I can do to avoid that.  I need to get my blood sugars back under control.

When I hear people talk about their resistance to starting insulin, I do understand that.  I’d given countless insulin shots (and IV doses) to patients over the years I worked as an RN before becoming disabled.  That helped a lot in knowing how and where to give the shots.  But I didn’t realize how little the needles had gotten. They are tiny !  They are so easy to get used to, and the vast majority of the time I don’t feel the injections at all.  Initially, the Lantus burned some but my numbers were so much better I didn’t care.  Now, the shots don’t hurt at all.  There may be a bit of discomfort for a second or two, but it’s no big deal. 🙂 I’ve had worse fingerstick soreness than I have had with insulin shots.

Anyway, while on chemo, it didn’t matter what I ate or how much insulin I took- nothing helped keep my blood sugars ‘OK’.  I wasn’t supposed to ‘diet’ during active cancer treatment.  I was gaining weight, taking more insulin (which stores fat), and had high blood sugars which makes ones appetite weird.  Hyperglycemia causes increased appetite. I didn’t need that.

Now I’m getting used to the ‘new’ normal.  I’m having to recalculate my insulin-to-carbohydrate ratios.  I had been at a steady 1 unit for every 4 gms of carbs pre-leukemia. Now it’s a crapshoot.  SO back to measuring, weighing, and doing before and after meal blood sugar checks.  It’s annoying, but I’m guessing dialysis, getting used to a leg prosthesis, and learning Braille would be much worse.  I’m also having to tweak my Lantus dose, and am doing a trial of twice daily Lantus.  I’ve got to DO something !

I’ve got a nice digital food scale (measures in grams and ounces), multiple sets of measuring cups, and various measuring spoons. It’s a pain in the butt to have to measure out everything that goes into my mouth.  But it’s necessary.  I’ve got to get things back in check.  Surprisingly, my A1C was under 7 during my annual physical and diabetic lab work in February of this year.  I want it under 6- where non-diabetics live.  The closer to normal I can keep my blood sugars, the greater chance I have at not developing the big complications.  So it’s all a pain in the butt for a very good reason.