Month: January 2024

I have always lived by the old adage, “If you don’t have something good to say, don’t say anything at all”.  I really don’t know where, why or how it became so ingrained in me but it is just something that is deeply a part of my being.  Writing this blog, and the book that came from it, I have realized it is a sort of “brand” with me.  I think it has been/is a good coping mechanism for being chronically ill.

Well, BUMMER.  For one of the first times in this long assed saga I just don’t feel like I can put a hopeful spin on things.  Maybe, as I write this, I will get there.  Perhaps the clouds will part and the sun will come out and once again I will become the “warrior” people call me.  Well, let me just address that whole “warrior” label while I am at it.

I did not sign up for active duty:  I was drafted.  The only reason I am a warrior is because a gun was put in my hands and someone started shooting at me.  I started running and shooting back and it just never stopped.  And, Oh MY GAWD, but I am fatigued!  I am so tired of war.

Every time there is a pause in the fighting, I think it is over.  I sit down with a cup of tea and a cookie and pet my dog and start to plan a life beyond the battleground.  I even begin new projects.  I start to learn a  new language or challenge myself to walk further on my almost daily walks.

Then the sniper fire starts up again.  At first I can just hear it a little in the distance.  I tell myself I am hearing things.  There couldn’t possibly be another battle coming my way.  After all, I have had enough, haven’t I?

But the sounds get closer and I realize it is coming for me.  I hear the ratta-tat- ratta -tat -tat -tat-tat of the enemy’s arsenal trying to blow its way through my poorly built defenses and I tell myself I will not fold.  I cannot.  I just can’t go back to wherever it is going to take me; a hospital, a doctor’s office, bed bound, couch bound, zombie land.

And then it’s right in front of me.  It’s firing at me.   I am shooting and nothing is coming out of my weapon but blanks.  My body is not cooperating at all.  In fact, in the last few weeks everything has gone haywire and I have been so damned sick and depressed that I have had a circuit from the couch to my bed and that is about it.  I was in the hospital with pneumoia for the 3rd time in 10 mos and I have a couple of other things going haywire.

I am getting better.  I am not going to die of any of this shit right now.  I am just overwhelmed with the constant battle.  I don’t really have anything good to say.  The only good thing I can say is that my husband is pure gold.  He has done everything and more for me and for him I will try to get better.

I have a lady problem and the doctor in charge of my pneumonia is a very nice young man but he doesn’t get it.  He won’t prescribe the medication necessary to deal with a side effect of a great deal of steriods and antibiotics.  It is beyond upsetting and makes me feel angry and powerless and humiliated just when I have had enough of that.  When I see him on Monday, I plan to school him a bit and in a nice but firm way.  Medicine is not an exact science.  I hope he can hear what I have to say.  In the meantime I call around to doctors and beg for medicine.  It’s not pretty.

My colon is almost completely dead.  That’s right:  Colon doesn’t want to work anymore.  I have to go to physical therapy for my butt!  It is so stupid and gross that it would be funny if it wasn’t happening for real.

The good news is that my dependence on an oxygen tank is lessening.  I can get off the couch without getting dizzy.  So, you know, there is progress.

So, there it is.  I just confessed all of the disgusting realities of my war torn body.

I am a reluctant warrior.

My flak jacket is riddled with holes and no longer stopping the flak. There are holes in all of the places that are supposed to be covered and I no longer have a helmet.  My gun keeps jamming and the soles of my boots are flapping wildly when I try to run.

A large part of me is starting to say, “Why bother?” But, I will find a reason to keep running.  Even if I don’t run for myself, I will run for my family.  I know they care whether or not I am around.

So, you see, I don’t really have anything good to say today.  I know I should bring this back around to the Divine.  But truthfully,  I have no idea where the Divine is right now.  I think She is on hiatus from my life at the moment.  Maybe it is me that is on hiatus.  Probably that is the case.

To be honest, I am just sort of pissed.

That may be OK, to just be pissed.

I will leave it there for the day.

 

Well, the title tells it all here.  It is no secret to those that know me that I have struggled with my weight and with my self image all of my life.  I freely admit that my brain sometimes tells me to eat or to graze because it doesn’t tell me when it is full.  It is like having an evil angel on my shoulder whispering “Eat it! Screw the diet… just eat!”

In 2017 I had a gastric bypass.  After struggling with my health and being on steroids for years, I had hit my highest weight and I just could not get it to budge.  The surgery nearly killed me but I made it and I have a 75 lbs loss five years later.  I am in shape and I know what foods I can and cannot eat safely.

However, there is a final 25 to 30 lbs that  need to come off.  My ideal weight used to be 135 but I am not going to worry about that.  I think (know) I can be healthy at 150 lbs.  The problem is, how to  I get there?

Each and every year since the gastric bypass I have lost weight, very slowly. I exercise, I abstain from all meat except fish, and I limit dairy and gluten as much as I can.  I do not drink alcohol at all.  I have a very damaged pancreas (due to a birth defect) and that causes me to have problems with digestion.  I do not break down the food normally anymore. My liver has taken a hit somewhere along the line so I have to be nice to it as well.

About 6 months ago I had a gastric emptying study.  This is a radiologial exam  and  you go in fastng and they give you radioactive eggs and toast.  Then, they do a scan of your digestive process once an hour for five hours.  The findings were interesting.  As a result of the 2017 surgery I now have a syndrome called, “gastric dumping”.  What that means is that everything that goes in my little, or bypassed,  stomach falls right out of it without breaking it down very well.

I have wondered if that is causing me to hungry but I am not sure. I have, unfortunately, been on and off of prednisone through the summer and  fall so that could be a problem as well.  However, the real issue is that for the first time in years I am struggling with that angel from hell on my shoulder.  For most of the last few years I have been able to keep her fairly quiet.   Right now the bitch is out of control… she wants to control me.  Bitch is talking to me non-stop. She says, “Just eat this one cookie…. you are fine!” She is evil… pure evil.

I am fighting her with prayer and with accountability.  I pray the serenity prayer about 50 times a day.  I ask G-d  to help me quiet that voice.  At night I write down my food for the day, as honestly as I can, and send it off to my weight loss buddy.  She has a little bitch on her shoulder too.

The pattern I have gone through these last years is that all of this comes and goes.  I lost weight over the summer when I was in the hospital for most of a month.  I had zero appetite still when I got home so the loss continued.  The last month or so have just been hell.  I wish I knew why.

So, I am tired of doing all of this.  I am tired all the way down to my bones.  I want to lose that last bit of weight and see if I can possibly have surgery to remove some of my excess skin and put my boobs back up in the normal location on my chest, rather than my waistline.  It turns out that losing a great deal of weight in your 50’s has definite drawbacks.  So, what to do?

Well, my weight loss buddy is on a drug called Metformin.  It is an entry level, well studied, drug used for diabtetes and weight loss.  I decided to reach out to my endocrinologist and see if I can take it.  Apparently it doesn’t always work for people and I did find out that some of the other new weight loss drugs have possible pancreatic side effects. That basically rules them out for me.  So I may just have this one shot.  I really hope it works.

I saw my endocrinologist.  Long story short, Metformin had too many side effects.  He wanted me to try one of the new diet drugs but my insurance will not pay because I am not obese and I don’t have diabetes.  Besides, I am pretty sure I will react.  I did go back on a drug called Topomax at his suggestion.  It is initially a drug for nerve pain and migraines but it definitely reduces appetite.  I don’t know if I will stay on it or not. One of my doctors disagrees with it.  I will discuss it with my pain dr. when I see her next.

Today, I sit here on the other side of some very busy holidays and listen to the entire score of Handel’s “Messiah” while I bake and stay fairly quiet.  Before Christmas I met with my wonderful voice teacher.  He said something I knew in the back of my head but didn’t want to aknowledge; there is something wrong with my voice.  I have whole sections of it  missing.  It is not getting better.  If I talk for an extended period, it gives out.  If I try to warm up my voice and sing for a while, it just doesn’t work.  I had begun to think the part of my life when I was a singer was just gone.  I was trying to let myself understand and mourn that on some level.  However, I kept going to my lessons hoping for a miracle.  When my teacher pointed out the obvious it was a huge sense of relief but also sort of like the tiny hole in the dam came unplugged.  I have just been feeling a lot of sadness.  It is like having a limb cut off.  In fact, listening to all these familiar tunes from Handel, and I have sung every one of them, makes me smile but also makes me cry.  I don’t know if I will ever again perform any music with a symphony.  Even if I get my voice back I can’t seem to go to a rehearsal without the danger of getting sick.  It really feels like a sick twist to things.

I should not dwell on it or think of it at all.  It does me no good.  And yet, I feel this huge gaping hole in my center.  I don’t know how to fill it.

Help me Lord!