Scenes from the Immune System Wars

I have been trying to write a new post for a couple of months now.  For some reason, nothing I have written has really come together.  This little entry will be different.  I will just write until I am done and post it regardless of its quality:).

The holidays were really busy for us.  It has been a busy and exciting year.  First, hanukkah came early, right on the heels of Thanksgiving.  We invited our friends from Houston to come and share the final night of the festival of lights with us and I cooked a large meal.  It was very nice.  My latke-making, non-Jewish husband had a rough time this year and we ended up just having a single latke per person.  That was fine though because everything else went really well.

Next, I swung into action to get ready to take Christmakkuh on the road.  Our daughter’s new in-laws were coming from Brazil and we took the Austin based branch of the family to Colorado Springs to meet them.  Our little SUV was heavily laden with four adults, one chihuahua and lots of presents and cold weather clothes.  It was a very nice trip and we enjoyed meeting the Silva branch of the family immensely.  Now I want to go to Brazil!

Now, it is back to reality.  I am back at work and trying to tame the semester.  I have more to do than previous semesters, which is fine, really.  I just get frustrated at my body’s lack of cooperation.  For a job where I sit down in my own house you would think I wouldn’t get so tired, but I do.  For some reason I am still struggling with sleep deprivation.  When I don’t sleep everything seems to spiral out of control.

Monday, (non work day) I had a check in with my pain doctor.  He is very well educated and widely read as a doctor and I am grateful to him in many ways.  He helped me get off of the drugs that were cross listed and making me a zombie several years ago.  (Well, actually I took myself off of them after he explained to me what was happening.)  In any case, my appointment with him Monday reminded me yet again that many doctors, and many men, who are also doctors, don’t have any idea how to speak to women.  He was horrible.  He didn’t ask; he TOLD me I was going to try a new medication that would magically solve all of my problems.  It is not FDA approved (which is OK, in and of itself) and that there was no way to find a dosage for me other than just to take it and have someone near me in case it goes badly.  He spoke down to me and interrupted me.  He told me that I am, “a bundle of nerves and too freaked out to talk to him.”  I pointed out that I have no problem talking to people but that I have PTSD with doctors.  He promptly said, “this drug will fix that.” When I  tried to ask him about my sleep issues he said, “you should not even be talking to me about that.  It isn’t your concern.”

WTF?  It most certainly is my concern!

I am at a crossroads here.  I don’t think I can change doctors within this practice.  I also have another doctor in another specialty in this same practice who I really like so I don’t want to jeapordize that.  I guess I will just try to avoid him and see his PA when possible.

What an asshole.  I will try his miracle medicine and see what happens,  I am certainly not scared to try something new.

But, it is so ironic because the only prescription pain medication I have anymore is non addictive and it really does not work.  I rarely take it.  I have gotten used to pain.  It has to be pretty bad for me to reach for something.  I just don’t want to go down that road. As far as going to a hospital goes: forget it!

I really want to wrap up this long winded entry.  In an hour I have a televisit with my rheumatologist.  I have a few questions for him but nothing earth shattering will happen.  He always treats me as an intelligent person, which is refreshing!  I plan to ask his opinion about this “miracle drug” that has been recommended to me.  I certainly got the feeling that Dr. Demanding was not taking the whole picture of my health into account when he decided I should jump onto his latest band wagon.

We’ll see.  I find this dr. very reasonable.  Besides, he really IS a doctor on tv.

No joke, he is on a commercial.

Well, I didn’t promise you a rose garden, did I?  Nope, just a long winded non sensical blog.  I can think of so many other topics to cover but for now I will wish all of you well.  Stay healthy! Stay sane!

And just say no to Assholes!

 

 

 

 

 

 

I really don’t like to admit this.  I mean I don’t like to admit it to myself or to anyone else. But, sheesh… my connective tissue disease/Lupus and friends/ whatever/is flaring like a real mother ducker.

What is a flare?  Well, what isn’t it?  Let’s see:  It means the connective tissue in my body is all irritated and that my body is attacking its own autoimmune system.  I guess it is visually like a cut on the skin that keeps opening up and bleeding and hurting over and over and then it starts spreading.

I have a lot of pain in all of my joints: fingers, wrists, elbows, neck, headache, knees and hips.  I am ridiculously fatigued even though I sleep twelve hours a night.  I also feel like I have a brain fog sometimes.  I try to form an idea or remember the name of something and I can’t access it.  Oh, and there’s the rash.  It only strikes at night. Nothing helps it.  NOTHING.

Some of this stuff is normal for me at this point.  I can deal with it on a daily basis.  But, when it gets so loud that I am slogging through the day waiting for the next hour to be over with and it starts attacking my digestive system, which it does, I get really irritated, and I don’t just mean my cells:)

I take an immunosuppressant, Plaquenil, (and yes I take immunoboosting infusions as well… it’s complicated) twice a day and it helps tremendously.  And when I feel icky I can take a very low dose of prednisone (YUCK) and it usually shuts down the overactive, stupid cells.

However, the stupid cells have not gotten the message this time.  I will see the rheumatologist’s PA this afternoon and she will want to discuss another drug, beyond Plaquenil.  Most people in my situation take something other than Plaquenil.  I have tried several times to take something that might help but failed.  I always get a reaction and it usually involves my gastric system.  I can’t tolerate anything that puts a load on my liver or pancreas.  So, I will say no.

This leaves me with one option: A shot of prednisone in the fanny.

I don’t like it and I try to avoid it as much as possible but sometimes it is the lesser of many beasts.

So, I am sure that was fascinating for you:)

I guess the above situation and the fight I have been having with my insurance company, which I have won for now, over my infusion medication, is the point here though.

It irritates the hell out of me that I can’t just forget for a little while that I am chronically ill.

I try to forget.

I try really hard.

I don’t think it is mentally healthy to be stuck in your own mess all the time.

I have learned to take good care of myself.  I work hard to keep the body I have as healthy as possible.  I have come SO FAR.  I just want to be granted a “get out of jail free” card in the game of Katie Monopoly.

I should know better. I am doing good to have a stay of execution.  I am being greedy wanting more.

But isn’t that human nature?  We all want more so we strive for it.  Striving is what keeps us going.  Or, at least that is what keeps me going.  I am always reaching for the next thing.  I don’t like being static.

This is a period of change in my life.  My husband and I are really on our own.  Our kids are launched and we have a new chapter in our lives ahead of us.  I have a million things I want to do and be.  But, the reality of my life and my health is that I can’t do a million things:  I can only do a couple.  And even those few things I can manage are reliant on my good and bad days.

I guess it is no worse or better for anyone else.   I just take it really personally if my body doesn’t let me do something I want it to.  I wonder though, what would it be like to simply accept my body, for reals, and be grateful to it for still working at all.

Does anyone else have advice on this?  Well, I have gotten advice on this!

I just can’t seem to remember how to pull it off and I know it I can’t blame it on brain fog.

I will transition here to something I learned from my spiritual director.  She asked me if it is possible to sit with G-d in the discomfort and simply ask, not for miracles or for a lifting or freeing from chronic discomfort, both physical and existencial, but ask for just the presence of someone/thing/being greater than myself to Be with me in my pain.

I think the point is that every day is new and every day brings me to another point in my jouney, just like everyone else.  It just so happens that my journey includes physical difficulty.  But that doesn’t stop me from living and reaching for the next goal.  However, I should learn to scale back and not expect to run marathons like: work, home, choir practice, study, Friday night worship and to bed at 11:00.  I would love that schedule!  But, I will never be able to do that sort of thing again, and I need to remember that’s ok.

But, the days when I feel like I can barely crawl off the couch are the ones that irritate me the most.  I have more of those than I admit to.  Most of the time my motto is: Go and do and ignore whatever your body throws at you.  But sometimes that is stupid and just wrong. I often feel like if I don’t fight it, if I let it put me to bed that day, it will end me.  It will win.

This is where a little faith might be useful:)  It is hard to trust anyone with my health mess and my little spiral down the toilet that occurs when I don’t feel well, even G-d.

But I know better.  However, I think, for me, it is more realistic to sit with G-d in the discomfort and the anxiety it causes.  It is difficult, but perhaps possible.  I can even put it into a framework of faith that makes sense to me.  As many of you know, I come from a mixed family, and after being a Christian minister, have found my way to Judaism, the faith of my father’s,(pun intended) later in life.  I have been studying and I think I understand this:

The G-d I undersand and count on is in a covenantal relationship with me; We work together.  That means I have to hold up my end of the deal and it means G-d does too, but we were never promised an easy trip on this planet.  That is made pretty clear in the books and teachings of Judasim. (Oh, and by the way, the Jewish G-d is NOT one of judgement and retribution. This is an unfortunate and costly misunderstanding that has dogged Christian understanding of Judaism for over two thousand years.) No, we are guaranteed nothing of the sort.  The only things we do know to be true is that G-d made us, G-d cares for us, and that we have a purpose in this life we live, no matter how it pans out.

Our purpose is to walk this earth with a purpose of the giving kind and pursue justice for others.  In other words, we do not live for ourselves alone.  If there is anything that can jolt me out of my own pain and my own miserable musings about my chronic crap, it is  the realization that there is still Work to be done in this world and that as long as I am in it; it is my G-d given directive to do that Work, whenever and however much I can.  And when I can’t, it is ok to sit and ask my G-d to sit with me.

 

 

 

The last year has been an emotional roller coaster in so many ways  but the one that has me rocketing back and forth today is that fact that my children, my babies, have really flown the nest for good this time.  I know this is how the story is supposed to go!  It is just harder in practice than it looks:(

My daughter got engaged in July to her lovely, perfect, boyfriend from Brazil.   We couldn’t have been happier.  We love him and think she is very lucky to have found such a great match.  They are obviously very happy together and I think they have what it takes to succeed in marriage, which is a good thing,  because they got married in August!

For many practical reasons, they had a quick, court wedding by themselves and we were planning a wedding ceremony for April.  But, life stepped in and put it’s large, smelly foot in the middle of our plans.  Several things happened:

1. Our son in law got a great job offer in Colorado Springs!
2. Brazil decided to quit offering new visas to the U.S. for a while.  You see they have their own President Trump only he is still in office and this means some of his family can’t come for the wedding.
3. We just have to put a pin in the wedding thing and wait.

So they had a grand total of three weeks to pack and move from San Antonio to Colorado Springs.  They did a great job and we helped out.  All of last week was spent with them in their new city.  My husband and I pulled a trailer full of their stuff and their dog (not in the trailer!) up to meet them and we just did some moving stuff and some fun stuff together for a few days.  And then we left.

That was hard.

I am so happy they get to have this new adventure.  I think it is good for them and they will enjoy all the challenges and rise to them, of course.  It is just selfishness on my part that I can’t see them in a day.  I will just hold on to the fact that Christmas/Hannukah isn’t too far away and we will see them then.

My son, who turned 22 on Monday, and his lovely girlfriend, 23, found a place and were moving out of our house as we got home.  This is also a good thing.  They are happy to be back out on their own.  I could tell from my son’s frustrated responses of late that he was ready to be independant again and I totally get it.

Actually, I am so proud of both kids.  They are out doing what they are supposed to do: They are adulting! They are in steady relationships and are forming their own little families.  I just never knew it would be both of them at the same time.  And I never knew that when it happened I would see their rooms empty of their stuff and feel such a sense of nostalgia for days gone by.

I can’t help it but to rewind the clock, like a movie in reverse and see them coming out of their rooms at different times, different years, in different sizes and I hear their voices shrieking with laughter or shrieking at each other.   Each of them was always so different from the other but they both were always loving and sensitive to each other and to us.  I miss the shrieking:(.  I even miss the socks and stuffed animals strewn everywhere.

I noticed one the few things my son left in his closet was the stash of legos.  I am surprised because he was just using them a couple of weeks ago.  I am sure every parent can relate to the feeling of stepping on a sideways facing lego in the middle of the night: Crap but those things hurt!

So, here I am.  I am feeling terribly nostalgic for days gone by and yet I know there are good days to come.  They will just be different.  But it is hard because being mom has been my most favorite job ever.  Now I am just left with a tutoring job that is really frustrating and a body that doesn’t do all the things I would like it to.

But  that isn’t the whole truth, is it?

There is more.  I am just in a low place today.

Tomorrow I will climb back up into the valley of abundance and look down on all of the things that  are offered to people without dependant children.

I think at least 50% of what I am writing about here is fear.  What am I afraid of?

The rest of my life.

What will I do with it?

Am I too old to expect much?

Let me be clear here: I always used to say I would accept aging gracefully and embrace it, blah, blah, blah.  I said this in front of my mother who clearly DID NOT accept aging gracefully at all and she was not quiet about it.

She bitched all the way and complained.  And while she bitched and moaned and told everyone how she was resisting age, she looked fabulous doing it and never let much of anything slow her down or age her.  She fought breast cancer twice and stage four breast cancer for over ten years and had no intention of slowing down.  She always looked like she was in perfect health and she was always the boss lady.    I think I must have some of that in me.

But I am learning that the boss lady thing only goes over well in certain places.  Namely, it needs to be more of an internal attitude that than an external one.

Mom could be a bit pushy at times.

I don’t want to be that way.  But I do want to believe in my own ability to be in the driver’s seat in my life as I go forward from here.

I am not done just because my kids are grown.  I can’t be.

There are too many things I still want to do.

Screw Covid and Screw all my dumb diseases!

Watch out World!  I haven’t even gotten started.

 

 

 

My cousin, who I looked up to as a child and was very close to as an adult, is gone.  She died of ovarian cancer last week at the age of 64.

She is survived by her four children and a devoted second  husband of twenty one years.  He has been her friend and loved her for 45 years;  Their story is a long and sweet  one.

She fought the cancer with everything she had and never gave up until two weeks before she died.  And when she knew there was no recovery she was ready for her body to give out on her as soon as possible and frustrated when instead, the cancer ate her alive with pain and her tumors stuck out of her skin: It is a cruel disease, cancer; a real, live bitch.

I knew what was coming for her because I had seen it before.  It ate up my parents and three other people I love.

I realize that we are all terminal.

No one gets out of here alive.

I just feel angry and betrayed that someone so very vital and still so necessary to her loved ones is simply cut down, like a weed, like a blade of grass. It’s as though a life is somehow an inconvienence to the cosmos: How can it be?

I have now lost three of my family members before they even hit age 67.

How is that fair?

What is going to happen to me?

Does it even matter?

I don’t know.

My cousin was loved.  She was spectacular.  Her life was worth a great deal and she touched countless people with her beauty and kindness.  She was talented and loving and a good friend.

She was a beauty queen,  an accomplished educator, a pianist, a mother and a wife.

She was a sister to me.  I opened a place in my heart to her that sort of closed when my parents died.  Now that part feels like it’s dying again and it hurts.

This makes no sense.

Yet, she was at peace and told everyone it was fine.

She really felt that way.  Her faith never waivered.

I wonder if my faith would be so strong.  Even writing this I realize I am angry at Something.  Yet I know that Something doesn’t mean us harm.

Two things come to mind here:

A.  I found her faith, her witness in the funeral ceremony she created for herself, strangely compelling. I am angry that bad things happen to good people, even though I know it is not G-d’s will that these things happen.  I am just left again with this feeling that I am helpless.

B. This feeling of helplessness is something with which I am well aquainted. I think it is because it is easy to see myself in her position.  I don’t know when and I don’t know why or which of my problems will get me but at the end of the day, but I know that I have some scary things that do tend to kill people.

I really don’t think about it.  If I did I would go crazy.  I just sometimes have doctors that raise their eyebrows at me and say things like, “Oh my goodness, you sure do have a lot things going on.”  Sometimes they say it like I am nuts or lying and sometimes they look at me like I am about to explode at any moment.

So, maybe this death and this funeral caught me in ways that were very, very personal.  You see, I don’t want to die before I reach my mid sixties.  I just turned fifty six.  That doesn’t sit well with me.

My husband would say that we don’t know things like that so there is no reason whatsoever to think about them.  I agree with him.

However, my brain doesn’t work like his.  I don’t compartmentalize as well as he does.  My emotions and my brains bleed over into one another: Damn Them!

I think I am just going through the stages of grief in a different sort of way.

But I do have to admit my cousin’s witness reminded me that if I stay solely in my own head and don’t reach for that which is Unseen, I will be afraid.  In her own eulogy she wrote a list of catastrophes she had lived through, ending with a five year fight against cancer with  …. “she wanted you to know that G..d was faithful EVERY STEP OF THE WAY….because her G-d was faithful to the end, giving her His ‘peace that surpasses all understanding’ throughout her life.”

That says it all.  She was faithful and peaceful to the end.

I never quite understood her ability to believe in the goodness of G-d through all things, but that belief was real.

I plan to take note of it in my own life.

I want to stop more often and remind myself that freaking out about every little thing is really not useful.  (I don’t freak out THAT much.. but you get the point).

When I intellectualize G-d and I think too much about my own situation, I end up in a dark place.  There is no reason to go there.

As I said in the previous post: The light is just outside the dark and all I have to do is step into it.

Today, I step into it with a purpose in my step.

Life is tough.  People you love get sick and die.  People you think are awful live to be super old:) Why is that?

But, in the end, my journey starts and ends with my spiritual health.  Thank you, sweet, sweet cousin, for reminding me.

 

I have bad vision in the dark.  I mean, my eyes just don’t adjust quickly.  I bump into walls and fall over things and generally make a mess of it.  But when you sleep with another person and several beasts you don’t want to wake everyone so you try to be as quiet and stealthy as possible.  Well, that and the fact that my husband is one of these people that starts when he is wakened.  His reaction is “WHATTTTT?????? WHAT IS HAPPENING?  !!!!!”

It is so dramatic that I hate to be the person that brings it on.  I feel cruel.

So, most of the time I just stumble around in the dark and do my best not to fall.

I think that is all most of us can do.

Over the last couple of months I have been doing quite a bit of stumbling in the dark.  I have been groping my way towards the light but it seems as soon as I reach it the lights go off of their own accord.  It is infuriating. I refuse to believe I can’t find the light so I keep stumbling around, hands out, and muttering to myself.

I notice others around me seem to be walking in full sun.  It feels as though it is just me walking in the shadows.

Every once in a while I come to the edge of the darkness and I see the light and step into the very edge of it and think, “Ah, this is so easy, why haven’t I walked out this way before? ”  Then, without meaning to, I walk back towards the shade, because it’s cool and familiar, and before I know it, I am back in the dark.

I know the reasons for my attraction to the dark just now: I’m sad.

Someone I love is dying and I know all too well what it means and what it feels like and I just don’t want to be here.  I don’t want to feel it or hear it or think about it…. but I have to.

I know the other reasons too.  I am still recovering from the blow my body took in surgery and I don’t like to aknowledge that.  I am having a lupus flare and it has taken me several weeks to even figure it out.  I hide things from myself.  Maybe that is why I stumble around?

I prefer light.  Light is where I think living happens.  Living is the reason we are here.  Losing a loved one is a good reminder that we should celebrate the hell out of every day: Right?

I think so.

I think I will run into the sunshine.

Care to join me?

It will be two weeks tomorrow since my hernia from hell surgery.

Guess what? I LIVED!

It has been pretty nasty but today is a good day and I had a follow up with the surgeon this morning.  He said I am cleared for light exercise and can swim, which is great news, given the excruciating heat wave we are currently experiencing.

I spent six nights in the hospital and they were really awful.  All of the things I feared about pain control and nasty nurses came true, unfortunately.  But, there were also good nurses and things got sorted out eventually.  It was just so frustrating to be talked down to and at and misunderstood at a time when I was vulnerable.

If nothing else, between the nightmarish hospital stay and the sort of domino effect the surgery has had on my body, first I had a chest infection and then a gut issue and now I have a lovely case of oral thrush, I have determined that having surgery to ‘tone up’ the loose skin I have from weight loss is just a non starter.

Two days later:

I will have to gratefully accept myself the way that I am.  Gratefully.

I am working hard on that word and all that it contains.

I have good reason to be grateful.  It is almost my birthday and I am reminded of what my dear friend, Patricia Clark, used to say.  I would ask her if she ever worried about growing old.  Her reply was always the same, “It beats the alternative.”  Grateful.  Pat died of cancer in 2009.  I miss her but remember a lot of her wise counsel.

I can be saggy and baggy but grateful that I lost the weight.

I can be weak from surgery and have some bad pain days (today) and days where I am fatigued (today) but it all beats the alternative, so I am grateful.

Today I read the bad news that my sweet cousin, Kay, who has been fighting cancer for the last six years, is losing.  I am profoundly sad because she has always been such an important part of my life.  I feel so many things at once.  I don’t want her to be in the pain I know she is in now or in any more as she goes through what I know is a difficult process.  I will miss her like crazy, but I want,  what is best for her and I know she is going to be ok.  So much of our family is there on the other side, waiting to greet her.

But I am grateful.  I am grateful for her life and how it has touched mine so deeply.  And I am grateful for my own life, despite my health challenges.  I am still here and that in and of itself is proof to me there is a force greater than humans alone at work.  Because all the kings horsemen and all the kings men shouldn’t have been able to put me back together again but somehow they did.

And I am grateful.

 

I have often been asked by other women why I wear make up.

What is it that I am trying to cover up? They ask.

Do I feel I need it somehow?

Am I nervous or do I feel  deficient in my looks?

Nah.  It really isn’t any of those things.

I do it for myself.  I like to play with the products.  A new palette of eye shadow really turns me on.  Or, trying a new type of make up base that promises a porcelain finish and seems to really deliver; I am all over it.

I come by this honestly.  In high school and college I was involved in drama and opera and dramatic narrative and just generally on stage a lot .   I learned how to do stage make up and it fascinated me.  The idea of shading the face so it could be seen at different angles under different lights just seemed so amazing.  You can turn the human face into an artist’s canvas, just with make up.

As I have aged it has given me a great deal of comfort to know that I can still play with my paints and highlight and shade and bring out the best parts and de-emphasize the others.  It is like a magic trick.

However, there is one part of all of this I can’t really account for.

I don’t know when it started or why but when I put on my make up I completely clear my mind of the day ahead.  I go to another place  mentally.  I focus away from the things that keep me captured or tethered to myself.  My  mind wanders and skips over topics like a rock jumps over a river bed.  It lands completely wherever it wants to go.

It is a type of meditation.

I guess it isn’t something you would reccomend in a book on formal meditation, “Meditation: The Make-Up Method”. But, it works great for me.  Maybe it is because I have myself such a comfortable set up in my dressing table area.  A few years ago I decided I needed a make up table and I bought myself a hodge podge table that opened up and had a mirror inside and came with a bench.  After painting the table I realized the mirror was not going to work at all.  It is not magnified and has no lights.  Also, the table sits rather high, which is awkward.  However, the bench fits right under the space between the sinks in our master bathroom.

Voila! I already had a dressing table:)

I have also bought some organizational items so that I can have all of my latest faves neatly stored and easily accesible.  I even have a lighted mirror that is so high resolution it scares me!

So after I complete my morning ablutions I sit down on my bench and pull out all of the goodies I think I might use that day.  A lot of days I tell myself I am going to keep it really simple and I probably should… but I get carried away.  I am enjoying myself.  As soon as the process begins, I quit thinking about the things that trouble me.  I just focus on my face and on some inner voice.. (sometimes the inner voice speaks outwardly and my family thinks I am crazy but there is nothing new there)!

I titled this, “What I Make Up For” because the answer is I make up for me.  After being asked the questions and frankly traveling in a melieu in my professional life that is filled with women who don’t mess with make up because they don’t feel they have to, I am finally comfortable with just being me.

Yeah, I like lipstick.  I like it a lot.  Give me an expensive manicure and wax my brows any day!  And yes, I will show up to your house or event with make up.  I try to make it look very natural… that’s the point.  But if it seems weird or makes you feel uncomfortable, I am saying this to other women, I’m sorry.

It is not a competition.  I love to look at the faces of all my women friends and how they look beautiful just as they are.  Some days, I go around looking just as I are:)  But mostly, I play with my paints and go to my happy place.

So I guess what I make up for is my peace of mind.  That is a pretty good thing so I think I will keep doing it!

I feel silly writing about the same thing a third time.  I mean really, who cares?

After all that kvetching about weight and losing 15 pounds on a dime and the surgeon I actually did something really smart.  I spoke with a nutritionist and she ‘happened’ to be just what I needed.  (I don’t believe in accidents of that kind.)

She told me, “BMI is not a good measure of health and fitness. It is no longer used in my profession as a measure.  You are doing very well.  This doctor is telling you he doesn’t want to operate on you so please get a second opinion.”

That is the sum of what she said, anyway.

So I took her advice and after I thought about it for a minute I felt kinda silly for all the mental acrobatics I had been putting myself through.  After all, the doctor in question is human and fallible.  It is irritating that he couldn’t just be honest and say he was uncomfortable operating on me.  But, I think doctors, especially surgeons, are trained to say they can do anything.  Then I realized something else: it was his partner I had meant to see in the first place.

I went back online and realized that the practice of the Austin Hernia Center and the Austin Surgeons overlapped; same number.  There was only one doctor listed as a hernia specialist and I had seen the wrong one.  Apparently you have to figure that out for yourself.  So I made an appointment with the hernia surgeon.

I saw him on Monday and what a relief!  He will do the surgery robotically and feels quite confident.  He explained it in detail and showed me the CT scan, etc. He seemed baffled (who knows?) by his partner’s behavior and ultimatum to me.   He pointed out that a really high BMI or weight is a problem but that I am not in that category at all:) Yeah!!!!!!

It will still be lengthy surgery and recovery and I will be in the hospital a few days.  I want to get it the hell over with so I scheduled it for June 2.  He said he is clearing his calendar for that day because my surgery will take several hours: ugh.

My son is graduating from his college  and we are having a party for him and then  moving him and his sweet  girlfriend and all their stuff back to Austin in late May.  I figured I would just get it over with after that.  I might as well get the summer going as soon as possible after this mess is done. I am taking the summer off of work, which will be a real relief.

It looks like a summer of hope and I am excited for it.  I want to be healthy and active.  My husband and I acted on a whim, sorta, and bought a 1977 Chrysler Buccaneer,  18ft.  sailboat from a minister in north Texas.  The boat and trailer are in near perfect condition and it was very inexpensive.  We used to own a very small sailboat when we were first married and I know my husband has always missed it. So, when we saw the advert on Craigslist I told my husband to follow up on it.   The boat needs a little maintenance but considering its age, not too much.

So, I plan to be OUT IN THE OPEN! I can’t get too much sun or I have a damned lupus flare or if I dive into the lake I get a sinus infection., etc. etc. but..

I am so much better than I have been in years and I think it’s time to just put on my floppy hat and enjoy everything.

I am grateful to have found out my daughter is staying in the general area another year as her boyfriend does a postdoctoral fellowship with his dissertation supervisor.  My daughter just finished her Master’s thesis and is not ready to keep going academically at this point even though she is insanely gifted.  She needs to clear her head a bit.  Going to school in the pandemic has been hard on everyone; my son too.

So the summer looks bright and I want to be there!

Sad, dissapointing things happen and loved ones will continue to be sick, etc. but I feel like after I get the lumpy bits out  of my tummy (looks like I swallowed a small animal… hernia is BAD.) I think I just plan on some JOY.

I hope you all have some JOY too:)

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)

 

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.