Happy, Sad, and Mad

I wrote in my last blog post that I needed fairly extensive surgery, fairly soon.  Since I wrote that I have been wrapping my head around it and I have had a CT of my belly region.

I just received a call from the surgeon.  He had looked over the CT and wanted to get back to me.  I really like the guy.  The news was not good, not really.

He confirmed that the hernia is one big mess and that it will probably involve going through muscle and a long recovery: yippee.  I was expecting to hear that so I was not surprised.  Then came the stink bomb.

I have lost 80 pounds in the last three years.  I have changed the way I eat and the amount I eat a whole hell of a lot.  I exercise three to four times a week even if I feel like shit. And I stick to a diet of no meat besides fish and try my damndest not to eat gluten.  And I only drink one glass of wine a year: at Passover! (G-d commands it:)

BUT THAT ISN’T ENOUGH.

I have to lose another 15 pounds to have this surgery.

I had already planned to take the summer off so I could do this and recover.  Besides, I will have a lot of people in the house and I thought this would help me in a lot of ways.  I was comfortable with the whole deal.  I had even told my boss that this was what I was doing.  Now, things have changed.

I feel smooshed.  I feel defeated.  What if I can’t do it?  How will I handle it if I have it in the fall and I am asked to teach a course at St. Ed’s which is what I am praying for?

This is not what I wanted.

Can I lose this weight really quickly?

I would be happy to starve my way to it.

I am generally not good at that nor do I think it is healthy but if means must, then maybe this is the time.

I know I should be happy that I am so close to a healthy BMI… (that is the issue).  I thought I would never be this close again.  My relationship to myself in terms of food has gotten so much better that I think I am just angry that it is somehow being questioned.

I have enjoyed just being my own boss and actually seeing changes that I have made all on my own.  I am afraid if I have to work on someone else’s program that I will do the thing I have always done: I will freak out and rebel and sabotage myself.

I pray that won’t be the case.  Maybe I can talk myself out it somehow.

No, I literally need to pray that is not the case.  I need to not take all of the responsibility for this on myself.  I need to share it.  I really can’t handle it on my own.

The old tapes, the ones in my head that are so old and so undesirable, still play when they are least welcome: “Katie, you’re just destined to be fat.  I mean look at you:  You suck.  Your mother warned you.  It’s your fault this is a problem in the first place.  If you had done everything right from the beginning after your surgery this wouldn’t be an issue.”

And yet I know what happened after the surgery is not my fault.  I was unconcious and almost dead for a month and then it took months to recover and then I had to get off of serious drugs.  Through all of that and through seven bouts of pneumonia and the flu and more, I still managed to reduce.

I did not really feel good about all of this until recently, during Covid,  when I started exercising religiously and keeping my diet laser focused.  Frankly, these things have helped.  I have lost another twenty five pounds in the last year and my body has just taken on a whole different shape.

I am proud of what I have achieved and I do not ever plan to go back where I was.  I am able to live a better life this way.

So, in the balance of things, fifteen measly pounds is no biggee. It is just that whole thing of having it imposed from outside and being put on a timeline not of my choosing. It is a mind game.  I suppose it is just like everything else.  It is something we want to control but we really can’t.  We know better and yet persist trying.  I am a capital offender when it comes to this.

So, after talking with others, which is the way I process information, I have come up with a plan:

  1. Be gentle and loving with myself.  I cannot take good care of me if I am angry at myself all the time.  I have to decide to model the care I would want to receive- on myself.
  2. I am going to ask for help even though I hate to.  I am contacting a dietician.  I have had a hard time with this in the past but I can do it again.  It cannot hurt to try.

I will let you know how it goes!

Viva los weightez…

(weak..I know)

 

A Surgery Date Coming Up

Well, Sports Fans,

It’s happening.  Around the beginning of June, as soon as I finish the semester and get the kiddos graduated and my son and his girlfriend moved, I am having hernia surgery.  Normally that would be a non thing.  People have those all the time, right?

Of course they do! And of course mine isn’t normal!

I have these huge bumps in the middle of my belly that have  gotten bigger and bigger since my 2017 surgery.  After I was healed and feeling better from that surgery I went to a surgeon here in Austin (I had that surgery in Dallas) and was told in no uncertain terms that the hernias were there to stay because no one in their right mind would touch me with a scalpel after  what had happened in Dallas.

So, I let that ride but decided that after three years and 80 pounds and building muscle I would see someone who specialized in hernias.  I found a very thorough and honest guy:  He was horrified.

Looking at me now he could not believe what I went through then.  He said I should have gotten this over with sooner. He was poking on me and looking as serious as death so I said, “Maybe we should just leave them alone.” He replied,

“No. The longer you wait the bigger it will get.  This is not three distinct hernias;  It is one giant one.  I don’t know if I can remove it laparscopically but I will try.  I have a feeling I will get two hours in to the surgery and have to open up your belly again.”

The thought of this freaks me out due to my experience three years ago when  I ended up in ICU for two weeks and  in the hospital another two beyond that.  It took me months to recover.  But, logically I know that won’t happen because I am at least 200% healthier than I was then.  It is just going to hurt a lot.

I also know he is not going to pull my innards out and re-arrange them like the Dr. in Dallas had to.

What this guy will be doing is just the opposite.  He will be stuffing everything back in to where it is supposed to go and using a piece of mesh to hold it in place.

I am trying to focus on the fact that I won’t have to always wear loose shirts anymore.  In fact, I had hoped this surgery would include a plastic surgeon that would take care of a few other key places that are, shall we say, baggy, since I lost all this weight.

Hahaha…. the joke’s on me.

What is really going on here is fear.  I used to march bravely into surgery no matter what it was;  I didn’t care.  I had total faith in both the outcome and in the medical community’s ability to keep me safe and comfortable.

All of that blind trust has been replaced with blind fear.  I feel broken and I have no faith whatsoever that a doctor with a scalpel, even one with good intentions, won’t either screw up or underestimate the weird ways my body reacts.

Here is the rub: Having a good attitude is key to success in this sort of thing.  Fear, and it’s first of kin, anxiety, work against having the best of outcomes. Both emotions stimulate the production of cortisol in the body and dampen the immune system.  Goodness knows I don’t need help in that area!

But, there is grace in abundance, even in  the parts of our lives where we experience fear.  In my case, grace has presented itself in the guise of time.

It is only the first week of April and I will not have the surgery for another seven or eight weeks.  This gives me plenty of time to work on my own monsters.  I will do that by processing all of what is going on with G-d and I can do that with his representatives in my life: my spiritual counselor, my family, my non-religious Jewish therapist, and many more people who come  and go in my day to day.

I will learn from them and reflect with them and take my uncertainty to the One who created me.

In the end I will trust that what happens, happens.  I cannot control all the outcomes.

In fact, I don’t even have to control all of the outcomes.  Maybe that should be comfort in and of itself.  I just don’t feel that way yet.

 

New Meds?

My lupusy shite has been flaring a lot.  It comes at me in waves of nasty rashes and joint pain and fatigue.  Let me tell you, it ain’t fun. I never know what causes it.  Is it my fault for over doing it or is it X, Y, or Z?

I never know why it is happening  but in any case I always try to just make do with it.  The last thing I want to do is go on more medication.  In fact, my goal in the last year has been to get off of as much medication as possible.  However, the only medical intervention for these flares is prednisone, i.e.  cortisone, which is not my friend.  I have been taking minimal amounts of it trying to get over these flares but it isn’t working anymore.  I had to go in to the doctor for a big injection.  That was ugly.  I couldn’t sleep for a few days and I was a basket case of emotions… (more than usual!).

So I have been discussing with my rheumatologist what to do.  For a long time, with other rheumy’s I have had, I was told there were no further options to try.  Between my primary immune disease and autoimmune disease, it was too dangerous.  Or, I had doctors who simply did not believe there was really anything wrong with me and I was crazy: loved those docs:(

This doctor and his partner have  been wonderful.  They know their stuff.  So, a couple of months ago we tried a new medication in addition to the plaquenil I always take.  It was Immuran, which is sort of an entry level drug and most people do great with it: Not Me!  I had an immediate reaction.  I was very dissapointed.

I waited a while to talk to the doctor and was hoping that the whole thing would just go away.  Of course it didn’t so I finally called him and we met.  He said it was time to try Methotrexate.  That would have probably been just fine and I would have already started it but, Damn The Internet!

I read all of the interaction and reaction warnings on the drug and now I am scared to death.  Methotrexate is an entry level chemotherapy drug.  I am going to be open to infection and it may hurt my liver and cause my gut problems.  Those are two, no three, areas where I already have problems.  The dr. wants me to start taking folic acid daily while I am on the medication. I am guessing that will protect my liver.

But all the thoughts run through my  head: Is it worth it? Can’t I just remain like I am?  Surely being sore and tired and rashy a lot of the time are acceptable.  I mean, what if I have a serious reaction? What if this? What if that?

I don’t mean to diminish people’s fears but I have little patience for people that fear a reaction from a flu shot or even a Covid shot.  For goodness sakes’ people, it is proven effective! Basically those are as certain as they can be and side effects are minimal for 98% of people. Besides, when it comes to Covid, the results of getting the disease are far worse.  Good grief but I am grateful to be vaccinated finally.  (And no I am not a robot or a pedophile nor have I been chipped…. well, corn chipped maybe… they get me every time.)

Sorry, I got off track there.

It is the serious drugs that have started to scare me.  I used to be willing to pop anything in my mouth.  I was raised by people who saw modern medicine as a miracle and believed that there was a pill for everything.  I believed that too.

But, over the last ten years, well, I guess over the last seventeen, (since my CVID/ primary immune disease) was diagnosed, I have learned otherwise.  Medicines all have a cost.  They can produce a miracle and have in my life.  Without some of them I would be dead.  But, it is a very delicate balance and I really don’t think any one doctor or human of any kind can tell what the best balance is for me personally or for anyone else.

Our medical system is disjointed, as we all know.  We see a different doctor for each different ailment and they do not talk to one another.  There is no coordination.  In fact all the coordination falls to the sick person.  You have to keep your files together and your medications up to date and ask all of the right questions if you don’t want to get into trouble and get cross medicated.  I found that out the hard way.

So where does all of this leave me?

Yikes, I don’t know.  Kind of freaked out but needing to just take the plunge and see I guess. I have been very fortunate with my autoimmune side of things.  A lot has gone wrong but so far I still have my major systems functioning.  It could be a lot worse.

I guess I will go for it and see what happens.

I will let you know how this next new adventure goes.