Tuesday, July 4, 2017

July 4th.... Independence Day

A lot to update on since the last entry!  I have been working a lot (shocker) and have been on the road a lot.  Since mid June I have been in Florida twice, New Orleans once, and some other overnight travels that have been a bit more local.  My cats are to the point when they see my tote or my overnight case they get very angry.  I hate being away, but I have a friend who provides them excellent cat sitting services, and they love her.

First, the health stuff.  Lots and lots of testing since early May, and in the past two weeks I have made the nearly 2 hour trek to the nationally acclaimed teaching hospital (NATH for short) 4 times.  I go back tomorrow.  This is what I know at this point.

  1. The 'thing' in my pelvis is some sort of tumor attached to a small piece of the fallopian tube that apparently was left on my right ovary that has grown SOMETHING.  We have no reason to believe it is malignant (based on previous history) and in the past year it has not changed in size.  It is unclear if my remaining ovary is involved.
  2. I go tomorrow to schedule surgery to remove this mass.  My doctor will have an gynecologic oncologist on call just as a precaution, but she believes it is not going to do anything else.  She also feels strongly that she can get it laproscopically without cutting my mesh incisional hernia repair.  I hope so.  If she cannot, I am going to not allow more invasive surgery unless they see something that it becomes essential.  
  3. I will be off work 2 weeks, maybe, and have a recovery of 6 weeks.  
  4. I am continuing the discussion that I want the ovary removed.  My doctor is really against that due to family history of osteopenia and osteoporosis and heart disease, but I am just a few years under the age for menopause, and if it is left, I will continue to have a figurative 'sword of Damocles' hanging over my head for the remainder of my life, and I can almost predict it is going to have to come out at some point.
We meet tomorrow, and discuss details and I believe I will be scheduling surgery at that point.  The fact I have had 3 invasive surgeries, much scar tissue, and horrible endometriosis is going to make this challenging.  If they are successful, it will be outpatient and I will go home that day.  I just have to figure out how I am getting there and back.  I also may hire a cleaning service short term.

I had my final follow up with my GI clinic doctor.  I was her last patient on her last day at the NATH.  She is returning to the midwestern state her family is from.  This was a mixed bag.  It appears that I am consistent with a diagnosis of Ehlers Danlos Syndrome, and furthermore, a mentor and colleague of hers is researching a new disease that they will be publishing soon.  EDS is much more than just hypermobility, it has mast cell activation, an auto immune component, GI issues, and for some, a vascular component.  This new thing is apparently 'Super EDS'.  The working name for it right now is 'joint hypermobility, autonomic dysfunction, gastrointestinal cluster syndrome.  (JHADGCS?)  I have more testing, one is a tilt table test (due to my little stunt that landed me in the ER in mid-May) in August that I will need to have someone go with me (I HATE THIS!) and I have nuclear testing in October that is over 4 days. 

My momentary reaction to this once I got in my car?  OH F*^& ME.  Due my own choices and behavior, I am very, very alone on this all.  No one's fault but mine.  The good news is I am glad to have an answer, and I am now in process to see the doctor who is publishing on this.  Not the answer I hoped for, and I guess I have to accept that, like it or not, I am chronically ill with an autoimmune and autonomic disorder.  I will continue to fight this with all I have, do my best to work out, run, push myself that way, eat well, and I have absolutely GOT to get my work/life balance under control, and I have got to get more than 3 to 4 hours of sleep a night.  HAVE TO.  This past weekend I was DOWN.  No energy, slept a lot.  I am still exhausted, but I am coming back up.  

Now, my hoarding mother.  She never asks about how I am feeling, only questions she can boomerang to talk about herself.  I answer things very generally, and am very evasive which makes her angry.  She has said to me again that she wants to know what I have because she is 'sure she has it'.  I did mention that I would be scheduling surgery and she immediately began to talk about her scaly heels and thick toenails.  Alrighty then!  Oy.

My HM has been just horrible  All the same things I have been talking about.  She lives in a self isolated, self encapsulated world where she cannot perceive of any other reality than her perception.  It is so sad.  

In mid-May I got really sick in an upscale restaurant and passed out in the bathroom.  I left the restaurant once I could and drove myself to the emergency room, upsetting and angering quite a few friends.  I again sent the message I did not want to, that I do not want support, that I do not trust people to do right by me.  I know my intent is to not inconvenience people unnecessarily, but I also know that I am going to go through this surgery and its aftermath relatively alone.  Someone will take me and bring me home, but if I have to stay in the hospital any length of time, it will be in a strange city two hours away, so even if someone was able to visit or wanted to stay to keep an eye on things, they would not be able to.  Oh well.  I did almost 4 days mostly alone in 2013, and I did the whole hospitalization in 2014 alone.  I got this.  But I have to do better, and I may need to continue to look at who I have chosen to surround myself with.

Lots of stressors right now.  My job is tough, with financial concerns coming from a contractual impasse that our major funder was involved in.  My board of directors fractured, and I will have a relatively new board and an all new executive committee.  Internal and programmatic challenges abound.  The person I was seeing resurfaced, and I went out with him in late May as a friend, only to be rewarded with being asked to be a 'friend with benefits'.  He has reached out three times more, twice to ask if I want to go X or Y with him, which I suspect means he wants a ride (he does not drive due to a disability) and not sure what his intent was the last time.  Yeah.  NO.  My ex-husband, who I am very close to, has been having a hard time mental health wise, and is in a depressive spiral.  A couple of weeks ago he struck a deer on his new motorcycle, and managed to walk away from it with minor injuries.  Last week I was assaulted leaving a restaurant and got my debit card and credit card stolen (this happened while I was in Florida).  I was headbutted and knocked down 'by accident'.  The side of my head is still sore, but thankfully the headache has receded.  This happened right before I was to return to the airport.  No harm done, just inconvenienced, and I have a sore elbow and shoulder.  It could have been a lot worse, and I think it would have been if I had not sprung up immediately and confronted my attacker.  The past two weeks have been one minor annoyance after another.  I had a bad gig in Florida.  I got rolled.  I had to deal with cancelling my credit and debit card on the road.  I got to my car and the hood was damaged.  I got home and in the flurry of unpacking, I thought I put my brand new suit in the dry cleaner's sack but I did not.  I figured out the next day that I had put my suit jacket through the washer and the dryer.  It did not live.  I ruined my favorite designer handbag with a busted gel ink pen, and had to replace the liner in the console of my car for the same reason.  My cat has had to go to the emergency vet, and as a result of that bill, I will not be taking my Italy vacation, I will be deferring that for a while.  

But you know what?  Despite all this petty stuff, I have a pretty great and calm life, and so much to be grateful for.  Sometimes you are the windshield, sometimes the bug, as the country song says...  But these types of things make me appreciate smooth sailing so much more, and with all the minor stuff lately, I have been able to deal with all of it and it has not been that huge of a deal.  Some time, some money, and for the property damage stuff, at the end of the day, they are only things.  I cherish my time with my 'granny cats' and with the folks that comprise my inner circle.  And all of this stuff tells me that I possibly on the cusp of making some major, and positive changes.  I win, or I learn.  This is where I differ from my hoarding mother.  She would be ruminating on these things, blaming, pontificating, and making small annoyances into huge and overblown deals.  And they are not.  

Onward and upward.  I hope to write more regularly!  Thank you for reading.


  1. Oh, I am so sorry to hear about your mugging. The emotional trauma needs to heal as well. I will be thinking about you and upcoming medical interventions. And please, let people help you. I don't really know you, and I would volunteer to drive (and wait) to get you to and from the hospital. I know there are many who you interact with everyday who would gladly help you out. Take care.

  2. Thank you Valerie! ((Hugs)) I appreciate you so much.