Sunday, March 19, 2017

More questions, but we are getting there...

Thought I would post a quick update of my appointment with the specialist at the teaching hospital in a nearby state that I have sought medical care from.

Last Friday was my follow up, and I ended up spending over 3 hours in the G&I clinic.  So, what we know at this point from all the invasive and intensive testing I have had performed is as follows:

  • Part of my issues came from birth.  I was born with them since I have had severe GI issues my entire life that were never caught or addressed.  
  • Part of my issues come from the surgery to save my life in 2013.  Could not be helped with the damage the tumor did.  I am very lucky to not have a permanent colostomy or ileostomy.  
  • Crohn's is looking more and more unlikely.  
  • They are now chasing down a definitive confirmation of a diagnosis of EDS (Ehlers-Danlos Syndrome) or MS since something definitely major/autoimmune is happening.  I had a crapload of labs done, and a cancer panel is being run as part of the search to determine the autoimmune issue.  
  • The fact that I have Raynauld's and other smaller autoimmune issues point to a larger one.  Lupus has been ruled out previously, but they are testing for it again.  
  • They are already starting the process for me to see the EDS specialist, not a fellow, so I am on the list.  Seems they think this is it and is more than just stretchy skin and joint hypermobility with me.  
  • The ovary issue is still in play.  There remains a grapefruit or a bit larger pocket of fluid in scar tissue that has now been there since whatever ruptured on my sole remaining ovary last May.  I am being referred back to Gyn to develop a plan to have it potentially removed via a cannula.  (OUCH) and to determine that happens next with the Lone Ranger (ovary).  
Getting older is not quite the trip into hilarity I thought it would be, and quite bluntly, I am the age my father was when he passed away, and I realize how truly young that is.  If this is the price I pay to have survived 2013, I accept it. I remain firm in my belief that life is meant to be lived a full volume.  The bloating that I experience (losing and gaining as much as 13 pounds in a day) and the exhaustion may be what I deal with from here on out.  I will work to continue to be the healthiest person I can be.  I will be thoughtful (but not obsessive) about what I put in my body, and I will continue my fitness goal.  I plan on a 26.2 mile race this year, and possibly, a 50K shortly after.  I have an obstacle race scheduled for July, and I will take no prisoners.

Nothing will get in my way.  Not even me.  I have resumed crosstraining more as I got into the bad habit of 'just running'.  I am in pretty good shape, but I can do better.  Been eating more sugar and junk than I should, and have lapsed into eating animal based products from time to time.  Animal protein seems to not be my friend with whatever is happening.  Nor is sugar.  Everything in moderation... even moderation... to paraphrase Julia Child.  

The biggest thing I have to get in balance is work- life balance.  That is my addiction... My coping mechanism.  I will beat this too.  I do not want to die in harness a workaholic.  Small steps.

Hope everyone is having a great weekend.  I am planning a long run and a bit of lifting, then I sadly have to have my face shoved in my computer for most of the remainder of the day.  Looking forward to vacation this fall. 

Thank you for reading!

From the mouth of a hoarder!

Oh MY...  

So, it is time for the next installment of 'From The Mouth Of A Hoarder'...

"Do you fart a lot""

Excuse me?  What?

"Do you fart?"

Not having this discussion...

"Well, I ...

<End call button>

....[Rambling self absorbed monologue]... "So I started using vitamin E oil on my feet at night and now instead of the skin being crusty and flaking like a snowstorm the skin just rolls up into balls..."

GAH!  <<Retching>>
"You need to tell me whatever they diagnose you with because I am sure I have it too..."

I snorted laughter, and this set her off.  The reason I did was I was talking with a friend at dinner the night before my follow up appointment at the teaching hospital.  In our discussion I had stated that if I was diagnosed with anything, by the end of the week, my hoarding mother would have the worst case of it that medicine has ever seen.

You are welcome.  Enjoy your day!

Tuesday, March 14, 2017

Just an update from down the rabbit hole!

Been a while since I last contributed!  Today is a snowy, blizzard-esh day in the north east section of the United States.  As for many, I am snowed in with my two cats, and I have used the day to work from home.

Since mid-January, a bit has happened, but nothing earth shattering.  My hoarding mother is still hoarding.  Her malignant narcissism is unchanged.  She has not gained any insight, has not developed empathy, and still works to flog me with guilt and to conflate small annoyances and concerns into huge crises.  She still continues to say amazingly cruel, racist, xenophobic and classist things.  One of the latest?  She stated how tired she was of seeing that everyone on TV was black.  It should be 50/50 if anything.  I took her task, and she retreated to angry and confused silence, and then changed the subject.  She still talks about moles, her nasty feet, and things that would make the most seasoned gastroenterologist puke.  She is intrusive to others, and is extremely judgemental.  She refuses to accept that although it is human to be curious, it is not okay to ask or to speculate on many issues that are, simply, none of her business.  

I do not expect any miracles.  She is not willing to change.  And she is not going to.  Her newest schtick is to express concern she has dementia starting, temporal arteritis, and an who host of alarming diagnoses.  I just will not engage.  She complains about the mess in her house.  She complains about the neighbors, states they are stealing from her, conspiring against her, are trying to kill her.  

Sadly or not, she is not in a place where someone can secure assistance for her against her will.  Animal control, the police, Adult Protective Services, or any other entity.  The codes office cannot help.  She is an island unto herself.

How am I doing with this?  I continue to work to heal the incredibly abusive childhood I survived, and I had a revelation that 'child abuse' does not end when you are a legal adult.  The strategies the abusive parent may or may not change, but the power and control and the underlying premise that the child is 'entitled to' the abusive parent and is an extension of their will, but not a person themselves (to the abuser) will not.  I continue to low contact plan, and I continue to attempt to understand the reverberations that her decisions to be willfully cruel, to not address her mental health issues and her hoarding have on me.  At almost 48 years old, I think I have a pretty good understanding, and I am working to insulate myself as best I can from her toxicity.  I now recognize the reverberations from what I survived, and I also realize that my issues to address are workaholism, my inability to (often) seek or receive help or kindness, and that I have SERIOUS trust issues.  I suspect that it is unlikely I will ever successfully partner again because 1) I don't really want to after over 21 years in committed relationships and 2)I am very clear of what are deal breakers for me.  At the first sign of a red flag I am GONE.  And at my dating cohort age, it is unlikely I am going to find someone that does not trip my alarm in an area or two at some point.  If they are not willing to swim a moat and jump a wall or two (through communication) then I do not feel they are worth my time.  I will do the same for someone I care about....  And I expect no less.

To paraphrase a meme, I will not make someone a priority if I am merely an option.  I have been an option my entire life.  No more of that.  I have been blessed to have friends that are like family, and my sweet furry girls (my cats).  Some of those friends are evolving in their relationship with me, and sometimes relationships are for a season, are for many years, or for a lifetime.  Some relationships have a shelf life, and I refuse to put up with someone who takes me for granted, and for who relationships are not reciprocal.  (Note I do not say transactional... another lesson from my hoarding mother...)  I have been searching for a therapist that is trauma informed and has an understanding of being the adult child of a hoarder, the adult child of a malignant narcissist.  I will find that person, it may take time... And I may have to go out of the area to a large city to find that person.  I am willing to do that.  

I am still on the path of determining a diagnosis physically, and I go to the nationally known teaching hospital for a follow up this Friday after several really nasty and invasive tests that have been run.  We may be closer, or we may not.  I think they are still leaning towards Crohn's, and there was another discussion of attempting of ruling out MS.  Whatever happens this Friday, I look forward to knowing more.  I know this may be a process and not an event, and this has already been a 16 month journey so far.  They now suspect it is more than one issue.  I am ready to know so I can deal with it.  I am still running, I am still training and pushing myself.  I continue to live life at full volume, albeit those levels differ depending on where I am energy and healthwise.  But I will not use the excuses to 'not' like my mother does.  I can.  I will.  There is not other acceptable option.  I still plan another 1/2 marathon soon, and I am planning on an obstacle race in July.  This fall I should be ready for a full 26.2.  We will have to then see if I can jump and do an ultra.

Work is threatening my trip to southern Italy in mid September, but I am going.  If not then, SOON after.  Political changes make my job very difficult and the future of my organization is uncertain.  I do the best I can with what I have, and we will not go down without a fight.  

Life is currently not being kind to several people I care about, whether it is health, relationship, financial, or the like.  I have been in my rabbit hole of work, and I need to NOT do that, and keep reaching out.  

I have many goals over the next several months.  Onward and upward.  My next blog will have some humor, hopefully more 'From the Mouth of a Hoarder'.  

Have a great week.  And if you are in the path of Stella, stay warm and safe.