Scenes from the Immune System Wars

 

I HAVE COVID. YEP AFTER ALMOST THREE YEARS OF CAREFUL AVOIDANCE I LET IT WALK RIGHT THROUGH MY FRONT DOOR.

OK: I obtained the antiviral, Paxlovid, quickly and felt bad for most of this past week.  Today is day zero as in I was exposed a week ago today.  I feel quite a bit better today.  I can’t believe I caught it from a doctor I invited to my house.  Irony is pretty much a bitch but she has a sense of humor!

I cannot say how thankful I am that I got this virus at this point.  I am four time vaccinated.  I got the antiviral medication.  The virus has become much less potent and we know much more about it.  I was still a bit nervous but nothing like the gripping fear that would have been the case even a year or a year and a half ago.

Did I want to get Covid?  Hell, no but I think it is almost inevitable at this point and thank goodness it is the summer and I am not working and it is all OK.

So, on that note I will shut up about Covid.

I do have something else on my mind but I will only mention in passing because it only pertains to this blog in the sense of mental health.  I think it is a drag not just on my mental health but on everyone’s at the moment.

Our state, Texas, is in the hands of facist meglomaniacs that wish to take away the rights of anyone who is not male, white, straight and wealthy.  These people have tentacles everywhere and have made inroads all the way to the Supreme Court, the Congress and the previous presidential travesty of an administration.  Things are getting scary and tense here.  Individual rights are being taken away, beginning with a woman’s right to choose.  Many young people no longer feel safe having children in this state. This is tragic and a brain drain on the state.

My family is directly effected and I am very down about all of this.  I am having a hard time pushing forward knowing things will most likely keep getting worse. I like to think hopefully but my husband keeps telling me the dye is cast and our federal gov’t will not hold together as a strong union much longer. Our country will split into red and blue states.  I think he is right.  Where to live? What does it mean?

I don’t know but I am searching for answers and I really wish I didn’t have the whole chronic health and doctors and specialists, etc, to factor in.  If anyone wants to comment on this… please do!

Thanks:)

 

 

This past week and a half have seen some dramatic news and quite a bit of work and excitement on the part of this chronic person.  I even had some Deep Thoughts. (Does anyone remember the Deep Thoughts skit on Saturday Night Live? I am probably aging myself again.)

Let’s see here:  Big news would be that my husband was offered a new gig with a new company, which is incredibly relieving to both of us.  For the last  14 months he has been on call 24/7 with no break and no extra compensation for completely cleaning up the mess of an entire department that had been previously ignored and mismananged.  He finally had to say he was done.  He has worked with the same group/company for seven years and loves the people.  Unfortunately, they were purchased by a fortune 500 company a little over a year ago and the job he was doing was basically no longer needed because the bigwigs didn’t see the importance in continuing process improvements.  He took his current job to just be a good guy with the idea he could work his way back out of it.  Getting out of that job or even getting a pay raise is no longer an option due to big company plans and politics. It is time to move on.  It has been an arduous process.

My daughter, who received a Master’s degree in her academic field of History last spring, has been searching for a job in something that would keep her connected to the University world but not force her to run out and get a Phd that would then force her into a publish or perish position.  She did it! She will be working for the Graduate School at her former University in the role of a grant specialist who works with mainly faculty grant applications but some graduate student applications as well.  I am so proud of her!

My son, too, has found a new job where he will be a team lead, and he is just one year out of technical school.  I am a proud mama!

I could go on… my neice is doing great at law school and my son in law is successful and my to-be daughter in law got promoted.  These kids are amazing.

What about me? Well, I have a harder time with singing my own praises:) I am taking the summer off, like I have mentioned, and plan to work on that, on me. I am bound and determined to finish my book and see it published this summer.  I am almost there. It is an arduous process for which I have had a lot of help.  I want to care for my house and get it ready for my son’s wedding in October.  The wedding will be very small and very low maitenance but still… I am having a wedding at my HOUSE!

I need to follow through on a few promises I have made to myself.  I have not been able to find a choir that is rehearsing at the moment and Covid is ever with us so I am going to go ahead with voice lessons.  I have some leads on that.  I think it is time to spend the money and just go for it. It means a great deal to me; heart and soul.

But mainly, I want to maintain a healthy relationship between myself and myself.  If that sounds weird, well, you should know me by now! In order to do this I have to be in open communication with my understanding of the Creator. How do I do that when I am really the kind of person that lives in her head most of the time?  Well, my spiritual mentor had some great ideas for that.  The one I have been using is the one I identified with and have clung onto the most readily.  It is the idea of visualizing getting direct  and  literal comfort from  God in the form of a touch or a hug. In other words, bringing God into the picture in a very personal way.

Many of us, whether we were raised in or out of a religious family, have a preconceived notion of God.  For Christians, the way to work this out  is often the familiarity of Jesus, who is believed to be both man and God, which is much more apprehendable than some big, celestial being floating around in the clouds and sitting on a throne. I don’t know about you guys but white dude with flowy beard and white robes sitting in judgement of all souls is something I find intimidating, and not the least bit warm and fuzzy.

Many years ago, I decided (after study) that my personal image of God was neither male or female, nor human nor anthing apprehendable in particular.  God is the ineffable. God is a force that is within us all and without us all.  Basically we have to apply human logic and imagination to something that is way beyond what we can understand. So I decided the most loving thing I could think of, the thing that brought the most comfort to me, was the love of my parents.  (I say this with a giant disclaimer! I know that for many this image of parental love does NOT work.) So for me, God is the divine parent who wants what is best for me but realizes that I am going to make mistakes and that I am going to fall and get bruised by life.

So where am I going with this?  Why is this blog post so damned long?  Because I am explaining how I got to my image of God that I can go to for encouragement and love and understanding and not think of it as a no no.  When I visualize a love that I can go to for absolutely no judgement and no words said, just a place where I can go to the sit at the feet of someone, lay my head down and know I will be understood and my head will be patted and I will be loved completely, that would be my father.  I can merge my heavenly father and my father, Harold Kelfer, who has been in heaven since I was 28.  That bond has never weakened.  I still feel it.

So, I have been going there, in my heart and in my mind, to rest and to restore.  And you know what? It’s working.  We are so loved.  We just have to let ourselves be known and let down whatever barriers we have up. Let love do it’s work in you and soon healing can begin.  I am starting to see this.  Try it yourself.

 

 

I  am looking forward to NOT trying to do so many things.  I hope this narrowing of scope will allow me to keep my self more at ease. Ease is good for a sick body and my body has been feeling unwell of late.  I don’t know where to begin with doctors to get things checked out or which part of me needs an overhaul so I just hang out and hope it will go away.

That may sound naive’ or stupid or like I am an ostrich, with her head buried deep in the sand.  I’m really not.  I am just badly burned by past experience.  I  can guess at it: “hmmm maybe this is rheumatological… I do have a low grade fever and my joints are hurting and I am really tired.” Or I might think a few more minutes and tell myself, “yeah, but my stomach seems upset all of the time so it could be a pancreas thing.”

The real point is that I don’t know.  If I start going to doctors and taking new pills it is like pulling one string in a ball of yarn.  It probably won’t unravel things, but it will just make more knots and each new knot will require more treatments and then the whole merry go ’round of doctors and symptoms could just get started again.

I really do have PTSD from the bad years of all of this.  I would rather accept a slightly lower quality of life than one that requires me to take any more weekly and daily treatments than I already do.

This probably isn’t rational.  But, I can’t help it.

I look things up on google like any idiot can and I see the life expectancy for people with even one of my diseases and wonder why the hell am I still here?  If I go poking any of the sleeping monsters that live inside me, will they wake up and carry me off?

I guess I am scared.

I know for a fact though, that after I feel bad for a while, I get to a point where between the aches and the fatigue and the other symptoms, I just want a solution.  So, I start digging.

I started digging this week.  On Monday I had to see a neurologist and I didn’t like it because she wants me back in two weeks for some mysterious testing and said it will be good if all I have is carpal tunnel.

I am getting tested for a big time UTI but no results yet.

I just left a message with rheumatology that I think I need bloodwork.  I have not woken up feeling well a single day this week.  It has been a struggle every single day.  It makes moving forward with anything difficult.

I am a big bore to myself and others this way.

So, I decided to not take classes at the seminary for now. I can’t.  I am tapped out from work and I want to finish editing my book and enjoy what energy I do have.  It is dissapointing in a way but a relief in others.

I will not work this summer.

I should, but I need the time off.  I have to priorize my health.  That is the fact and  I can’t change it and I have decided to aknowledge reality rather than keep running and being dissapointed when things don’t work. This is what I mean by a new focus.

I am grateful for many, many things:

My country is not being blown apart by Russians.

My children are safe and healthy.

I don’t want for anything,

My insurance doesn’t want to fill my igg prescription because the generic version is cheaper.  My doctor doesn’t approve because I have so many reactions. She argued and appealed a few months ago and won.  Now, she is doing it again.  I just got a call saying the appeal was turned down, again.

How is this possible?  How can insurance dictate medication prescribed by a doctor?

I am grateful though that she fights on my behalf.  Also I will send a note to our national Immune Defense Fund.  They are fighting this sort of thing in Congress.   Crazy world….

Anyway, may we all focus on the things/people and places that make us whole.

 

 

Well, readers, I have been on a learning curve.  It is steep, long and contains some pretty big switchbacks.  I am trying to learn about how to edit and publish a book.  I have a relatively easy time with some part of the process, i.e. I like to write and I don’t even mind the editing part too much. But the whole process of sending a book out for publication has grown quite complicated in the digital age.

There are at least 5 or 6 different ways to go about it and they all have pros and cons.  It is a bewildering forest where I cannot see the sky for all the trees. However, I do have some road maps.  I have an online aquaintance that has published 14 (soon more) books of fiction and she has written a great deal to me explaining all of the plusses and minuses of the  various ways to go about it.  So, I am going to go carefully down one road and see where it leads.  If it leads to a dead end, I will just try another.  I have to remember, there is no talking GPS here!

To that end and due to some other flashing red lights that I will talk about in a minute, I am going to take the summer off of work again.  I feel like my body, soul, and mind are all screaming at me to slow down.  I find that screaming really annoying so I have been telling it to shut the heck up for several months now.  I mean, come on!  I work half time FROM HOME.  How difficult can it be?  My children are grown.  I should have all the time in the world, right?

Yeah, no:  It doesn’t work that way.  It would seem that chronic fatigue is alive and well in my mixed up connective tissue/lupus addled, primary immune challenged body.  I really, really find the more I fight it out with myself the worse it becomes.  Intellectually I know this.  I have certainly heard it often from my loved ones.  But there are some voices in my head that say differently, ” Katie, if you give in, you won’t get anything done, ever.  Your life will dwindle into nothing but that of a sad couch potato.  DID YOU HEAR ME? GET UP AND MOVE, BITCH!”

Yep.  That’s kinda what I hear.  And I don’t just hear that voice; I have deep and solemn respect for it because part of it seems true.  I lost so much time being sick for years that I cannot get back that I am determined not to have that happen again.  I always have a nagging sense that I am operating on extra time. So, maybe that is natural considering where I have been.  But when I stop and examine what I really want from life, you know, bucket list items, being an online tutor that doesn’t make much difference in the household budget really isn’t high on the list.

My pride is getting in the way here. I had planned to be in a different place at this point in my career and life.  I had hoped to be a financial contributor of substance.  I studied hard and worked hard to learn skills that I knew would never make me rich, but would, I hoped, pay for a few things.  That just didn’t happen.

However, what did happen is that my husband and partner of 36 years made some good choices and those choices have led him to making a really good income that has allowed us to lean heavily on his work, and him, to bring home the bacon.  For this, I am eternally grateful

And now I am going to wander off on a tanget so you are forewarned: TANGENT AHEAD: SELECT ALTERNATE ROUTE IF YOU WISH TO GO AROUND.

Covid these days is really frustrating if you are in my situation, or if you are elderly or  have a tiny child, etc.  Case counts are dropping, which is wonderful, yet some of us  still have to be cautious despite our vaccination status.  We cannot relax as those around us have.  Over two years into this pandemic and I personally feel like I have been left behind.  I don’t want to tell people, “You can’t come over because I don’t know if you have it. ” Instead, I watch others resume all activities, such as eating inside restaurants , when it is a risk for someone like me.  I am sick and tired of this too! Yet, I understand that no one should have to stand still and alter their lives to protect me at this point: except my husband, who does and for that I love him unreservedly.  Life has to go on.  I just don’t want to miss it!

OK. I am done with my tangent.

Moving on, I realize that getting something published is pretty important to me.  I AM going to make it happen.  I am going to take the summer off of work and not feel at all guilty about it.  I will get my writing out there, birth it, and see what happens.  I will start the journey towards becoming a Spiritual Director, as I have mentioned before, and see where that leads.

I don’t picture myself as a full time writer.  I also don’t picture myself as a full time Spiritual Director.  I don’t know that I can do anything full time or even part time, based on my current work experience.  The only full time thing I can do consistenly is work on myself.  I have to get to doctor’s appointments, take zillions of meds and be nice to myself.

I guess that’s not so bad, really.

It is all in the way you view each day, right?

 

 

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.