Sunday, October 9, 2016

An update and a bit of introspection...

How did it become mid October already?  Six and seven day work weeks putting in 60-80 hours a week is catching up with me.  This is a temporary thing, I had a staff member who went out early on Maternity leave, and we have many wrap up reporting things, new grant things, and new projects going on.  Such is life, and I hope things will pause for a moment in November.

I missed both half marathons due to work.  I am in the midst of another 'flare' of whatever this health issue is, and I am not sure my 26.2 is going to happen in mid November.  I will keep training and trying, however.  Sometimes life progress is not linear, it is the cha-cha.  I seem to be in the 'two steps back' phase.

My hoarding mother continues to wreak misery on anyone unwise enough to engage her or be within eye-view, sadly.  Her behavior continues to be selfish, self centered, and intentionally cruel.  She is consumed by resentment and paranoia, and she is simply unable to entertain any perspective but her own.  She cannot give anyone the benefit of the doubt, and does not have any understanding that folks are complex, are not singularly natured.  It is hard to tell what is even rooted in a bit of reality, and it makes me sad.  She did not ask for her trauma history, her mental illnesses... but she steadfastly refuses to be part of any solution.  

I keep thinking about her inability to be close to people.  How she alienates folks, engages in scorched earth reactions, and has no idea of boundaries or that other people exist independently of her and her wants.  

And I keep thinking of my challenges in trusting, allowing intimacy, and my current dating challenges. The person I am seeing is hanging on, barely, I think.  We have had the intimacy/trust conversation, and I think much of it is with all the stress (good and bad!) that is happening in my life at the moment I simply do not have the bandwidth to push through this.  He may simply be the right guy at the wrong time.  The question is... will there ever be a right time?  Will I allow that to happen?  

I did not adopt the Sphinx kitten, but tomorrow I pick up a 13 year kitty I filled out adoption papers on.  Her story tore my heart open, and I think my 14 year old rescue kitty needs a companion.  

I have been re-evaluating relationships and what is important.  I find my inner circle is shrinking, but the folks that are in that core group have great depth and my trust.  Maybe the person I am seeing is simply not there yet.  Maybe this is a marathon and not a sprint.  

I am making some small changes to try to get my health back in balance.  I do not have any answers as of yet, but considering I have had two flares pretty quickly, one right on top of the other, tells me that I am not dealing with stress as well as I would like to think.

I know I use work as a shield, and to insulate myself from pain.  I know that I have issues to address, and that trust will always be tough for me.  I know that I tend to focus on other things, putting everything else ahead of myself.  I also know I tend to be oh-so-critical of myself, and I need to cut myself a break.

Small steps, one day at a time.  I deserve that much!

Have a great evening.

Hoarding, no one wins.

Monday, September 5, 2016

Life in the 'Adult Child of a Hoarding Parent' Lane... Not quite as catchy as 'Life in the Fast Lane'...

[Referencing the title of this blog...]  Nor as fun.

Sorry it has been so long since my last post.  I did what I do when life gets complicated.  I went to ground.  I am trying to work on that behavior, but I seem to continue to suck spectacularly at it.  With that being said, where we are...

I could blame a lot of the challenges I have been experiencing on work, and that would be only partially true.  Work has been busy with year end stuff, staff turnover/hiring, and expanding the legal center and starting a therapy program that we were just funded for.  Work is expanding and growing, and with that, it is expanding beyond our current capacity and that is PAINFUL.  For all staff, and especially for me.  But I revel in these challenges.  I am still not consulting, and although my discretionary income feels the pinch, I needed to focus on my health and the day job.  

I have things I have got to get done.  Getting my 2015 taxes done (yeah, I know) and basic things.  I have been trying to regain my momentum in preparing for a marathon in November, and that has not been exactly linear.  I may or may not run a 1/2 marathon this coming weekend, and if not, I will run one 2-3 weeks later.  I was doing great, and have had a bit of a GI flare.  My GI consult was rescheduled for October, and now all my records have been secured, and it appears they are thinking Crohn's is the most likely diagnosis.  There are worse things, and I just want answers, and a plan to remove the fluid that is still in my pelvis.  But, overall, I am doing well despite not sleeping.  

My hoarding mother is continuing to be her normal, cruel and malevolent self.  She is to the point where no matter what, she cannot get along with anyone, and cannot get contractor and yard work done.  She is also getting declined all over town as a new patient for primary care physicians.  Word is out in the small Appalachian town she resides in.  Her delusions of persecution and of social status continue.  She continues to have violence ideations, and her 'conversations' with me are little more than a pontification pedestal for whatever she is zealously evangelizing about, in her disturbed and intentionally cruel way.  Every foray into town, every interaction with a neighbor, every phone call devolves into a confrontation and a scorched earth reaction.  

I had the pleasure of going to central Florida in late August for a week to stay with friends.  She has yet to ask about my trip.  I did not talk to her for over a week, and it was absolutely everything I hoped it could be.  My trip was relaxing, and full of fun, boats, airboats, alligators, shopping and the beach in Sarasota, relaxing and running in the sunshine.  It was simply perfect.  My mother has no frame of reference for friendship, nor taking a vacation.  

I have been trying to see my friends more and trying to not completely go to ground, and my dating life has been, um, interesting.  I have been seeing someone since early June, but we have not had the exclusivity conversation yet, and neither of us are ready for that.  So... I am continuing to date.  I have had three dates in less than 24 hours one weekend, and I am going to pull my profile soon.  I have realized that I have such deep, deep trust/intimacy issues that I may need help to broach them.  I am watching someone who would like to have a more physical relationship pull back because I do not know how to let someone love me.  I have several thoughts on this, but I am just so guarded and armored that it will take a while, and in 2016 middle aged dating moves fast.  I have to accept my deficit, and accept the consequences.  I am taking it one day at a time... but I feel pretty sure I have blown this relationship before it has gotten started.  It is really sad, and I seem stuck and unwilling to fix it.  I did mention to my mother I was dating, and she is, of course, overly critical of that.  She was excited I was seeing a doctor briefly, but it became clear he was looking for a wife and a stepmother to his teenage sons.  Um... NO.  Maybe I should stick to cats.

My ex husband, who is a dear friend, is on downward spiral.  He has left his long term life partner, has been off work on medical leave for the past 2 months, and is seemingly on a trajectory similar to the one that happened when he and I ended our marriage in 2008.  Again, not my circus, not my monkeys, but it has reopened some wounds that I thought were healed well and scarred over.  Apparently not.

Speaking of cats, my remaining kitty is doing well since the passing of my baby girl nearly two months ago, but in letting myself grieve and heal, I may have done her a disservice.  She seems more anxious when I am gone, and my Florida trip was hard for her.  It was compounded by the fact she had ended up in the emergency vet the week before, and what looked to be serious (as in putting her to sleep serious) turned out to be easily remedied.  I thought I was going to lose a third kitty girl in barely over 12 months, and it was horrible.  So... I found a Sphinx kitty to rescue, and I meet her tomorrow.  Hopefully she is compatible.  My hoarding mother is totally against me getting a hairless cat.  She has decided they are similar to the Chinese Crested dog, and stated it will die young, will be prone to skin cancer and problems, and all kinds of factually inaccurate information.  She is also against me getting another cat period, apparently... Who knows for what reason.  And I do not care what she thinks.  Not her circus, not her monkeys.  I have a lot of love to give a kitty, and I have always wanted a Sphinx kitty.  And now I have the opportunity.  And for some reason she simply cannot stand it.

She claims she is going to an attorney to put my name on her house.  One, I do not want it, and two, I will believe it when I see it.  I do not want to be on the hook for a 1960's rancher that is a level 5 hoard.  I know I can reject that when the time comes, but OY.  She was also allegedly told she needs a knee replacement.  That will not happen. She will be 80 in December, and I do not see any of this going any easier or any better.  I have connected with a local narcissistic mother group for women, and it has been extremely helpful to connect face to face with others struggling with the same thing.  I also had another 'aha' moment with them when I shared something I considered relatively minor in a self-deprecating, sarcastic and humorous way... I was eating sushi and was looking down, and since there was silence I looked up to 3 faces of varying degrees of horror, anger and compassion.  I have dissociated from the sheer awfulness of my growing up with her that I have no frame of reference it seems.  This is the second time this has happened, and it is shocking to me and strangely validating.  

I did experience intentional and malevolent abuse at the hands of my mother.  

I survived. 

I did not escape unscarred, however.

I will continue to learn, to love, to grow, and to combat my own demons.  

I will live life at full volume.  

This is the direct opposite of my hoarding mother.  Growth is painful.  Self examination can hurt.  But it is worth it in the end, and failure to do so results in merely existing and not living.  My hoarding mother is a shining example of that.

Onward and upward.  Hoarding and narcissism... No one wins.  No one.

Saturday, July 30, 2016

The whirlwind that has been the last three weeks...

The past three weeks has been a whirlwind.  My last couple of posts were full of medical uncertainty and the unexpected loss of my sweet little cat.  

First the medical update on me.  I returned to the teaching university hospital to have further testing and to continue to develop a plan for potential further intervention.  Long story shorter after additional ultrasounds and testing.  

  1. The mass on my ovary ruptured before my 7/8 consult, that is most likely what caused the 'Exorcist' bouts of vomiting and pain.
  2. I do NOT have a fallopian tube on my sole remaining right ovary, as I tried to tell the doctor in my area, and who would not listen to me.  The mass they are seeing is not something on the tube, it is a large amount of fluid in my pelvis that is trapped around that area due to the large amount of scar tissue/adhesions/endometriosis that I have.  
  3. The amount of fluid is significant and should be removed, but it is not increasing.  It is what is causing the pressure and pain I am experiencing in my lower right quadrant of my pelvis.
  4. The other symptoms, including grinding fatigue, bloating, and GI issues is not appearing to be related.  
Now- the game plan is as follows:
  • I will keep the appointment with the GI clinic, and they now have more testing and data.  My blood work and cancer markers were disgustingly normal.  This is good news, little to no concern of ovarian cancer.
  • I will continue to call every week to see if I can be seen sooner.
  • The referring doc will work with the GI clinic to see if they can develop a plan to remove the fluid without opening me up surgically, perhaps via a large cannula as long as they can avoid the bladder and the bowel.  Scar tissue, etc. and the fact that nothing is where it is supposed to be makes this a bit more complicated.
  • If they do have to open me up for any reason, the ovary will be removed.  Boom.
  • They are working to rule out Crohns and IBS, and my primary care doctor (not jerky, mansplaining, I-will-not-look-at-records-nor-listen-to-you-doctor who was going to open me up with a defective surgical plan) will continue to work to rule out MS. 
Not thrilled with the fact that any of these three options are what is on the table right now, but both Crohns and IBS run strongly in my family.  I am hoping to avoid surgery altogether even though that ovary could be problematic at any time in the future.  I still am in the place of 'waiting for the other shoe to drop'.  

I am making dietary changes, and am working gradually to resume a vegan diet (that in part, helped me on my journey to lose over 130 lbs and ease some of my PCOS and endocrine issues), and having started the changes in the past couple of weeks, I am seeing some improvement with the fatigue and the pesky GI stuff.  I am starting to push myself more in my running, and I am aiming to resume training for a local marathon in the late Fall.  My running had decreased 33% (mileage) but I am going to work on that.  I know truly understand 'spoon theory' and I know that my energy is not (seemingly) unlimited.  

My remaining cat and I are dealing with our grief, and moving on as best we can.  I got my little one's ashes last week, and that was a sad day, but she is home with me.

Through all of this, I have kept my hoarding mother on the low contact plan, and her decompensation mentally continues.  I am wondering if some of the recent repetition I am seeing might be the drop in to dementia, but it is so hard to tell what is true, what is not, and what is her attempts to maintain control.  What my mother's neighbor tells me is more likely than not closer to my mother's actual reality, and she is concerned.  

My mother's MO has not changed, but she engages in endless and pointless speculation on other people, their intentions, their lives, and it is so far removed from most folks healthy interest in others.  She continues to wage her wars with anyone who is in her path, and most 'wonderful strangers' fall from their pedestal almost immediately.  The world is a small, terrifying place to her, and it is just sad.  In every contact with her she says so many things that are fodder for the 'from the mouth of a hoarder' post, and she engages in what a friend calls 'verbal masturbation'.  Once I got over the need for brain bleach, she has a point.  My hoarding mother needs no input, all conversations are monologues that she sometimes has to navigate pesky other viewpoints or comments.  It is basically a sick, paranoid stream of consciousness that also includes a good dose of racism, xenophobia, and internalized misogyny.  And the blatant hypocrisy of the dearth between her actions and words and the expectations of others.  Ever conversation is about her, and about her feelings, experiences, thoughts, etc.  The level of introspection is poor, and the level of narcissism is off the charts.  

Life is stressful, and we all have our challenges, which somehow we navigate and move past.  I find with my hoarding mother, life is a burden, a disappointment, and something to be simply endured... Yet held onto as tightly as she hoards her belongings.  A life like that, is to me, the closest thing to utter hell one can endure.  A life of opportunity lost and of retraction, rather than growth.  

I conciously choose happiness, and although there was a couple of times in the past couple of weeks I wondered aloud how much more I could take, I knew the answer to that.  All of it.  Every bit, and more if it is dished out.  Because I believe that the 'sine curve' of life's experiences... some really happy and elevated, some really awful and the line drops below the median level... make up the learning and the richness of it.  I appreciate health because health challenges have helped me understand that I am not immortal and that health is precious and should be protected.  I value friends, and although they sometimes hurt me, betray me, leave, or die... Their presence left me with something positive, and I hope mine left them in a slightly better place, even if I was a 'lesson' to them.  

Life is meant to be lived at full volume, and I am going to continue to give it all I have.  I have to actually credit my hoarding mother with being an example that I can learn from.  From the abuse, the pain, and all she has meted out over my 47 years, from that I had to figure out that 'I can, and I will' and that failure is not an option, simply because I either win, or I learn.  I think I have her to thank for that.  It is a double edged sword, as are most gifts.  I can also use this resolve and resilience to isolate myself and to alienate others.  I work on that every day...

Now off to do a 2 hour training run.  I am feeling full of energy after a slow start and a lazy day enjoying the company of my 14 year old cat.  I have been spending more time with friends, and have dinner plans with friends tonight.  I also plan to see the gentleman I have been seeing tomorrow, our schedules have not aligned in the past week and half, and I have missed hanging out with him.  Monday I start the planning for my trip to Italy in the Fall of 2017.  Onward and upward.

Life is good, not in spite of the wrinkles, but with them.

I wish I could say the same for my hoarding mother.

I am starting to dig out at work and entering a very busy work phase of grants and reports, but I will try to not drop down the rabbit hole again, and I should have more blogs focused on my journey with my aging, hoarding mother soon.

Thank you for reading.

Monday, July 11, 2016

Hearts can break... Not hoarding related

Last night my 12 year old kitty who had the grand mal seizure this Saturday was unsettled and we did not sleep, she just snuggled and wanted petted.  We finally feel asleep around 4am, and at 7am the neuro who she was referred to called and I needed to get her to their clinic in the next state by 9:30am.  I made it happen, and my little one was NOT happy.  At the neuro they discovered her BP was elevated above the frenzy she works herself into when travelling to the vet, confirmed her heart murmur, and discovered that her pupils were not dilated at an even level and thought she might have some sight issues.  

His suggestion was that she could have a brain infection (unlikely, her platelets were low, but white blood cell counts and temp was normal) or have thrown a clot from her heart, had a stroke, or had a tumor.  He presented a plan for $5,000 in testing that included sedation (risky for her at 12 with a heart issue) and included a spinal tap.  I needed a moment to figure out whether to use a credit card, apply for credit, or figure out another option, and I called my vet who recommended coming to her.  I paid my bill, and they gave me antibiotics, and I left.  

When I arrived, the doctor had reviewed the information from the emergency vet this weekend and the neuro, and we discussed options.  It is very unlikely it was an infection with no fever, and the likelihood it was a tumor or heart issue was high, and the fact that she was showing neurological symptoms was not good.  The likelihood of her having another horrible seizure was not an if, but a when.  And most likely would be soon.  And what if I was at work, out of town, or in the hospital having my surgery?  She discussed how the seizures would most likely be worse and could be excruciatingly painful, and paralysis could result, or other horrible things.  Her recommendation was euthanasia.  She is very reluctant to move in the direction normally, so I knew... I said goodbye to her and she went cuddled in my arms.

Now my other kitty and I start a life without her.  I miss her so much.  She was my love bug, and my special sweetheart.  We did not have as long as I would have liked, but in the 10 1/2 short years we had, we loved multiple lifetimes.  I have to hold on that, and when the time is right, I will honor her memory with adopting another special needs kitty.  I owe her that much.

Hearts can break.  I felt mine rip on Saturday during her seizure, and it shattered today at 12:30pm when she left my life.

She was the best.  And I will miss her every day.  I do not know what I did to deserve her and her love.

Sunday, July 10, 2016

Update- I cancelled surgery for tomorrow

For once, I am counting down the minutes until Monday arrives.  This weekend has been simply awful and emotionally draining.

I was scheduled for surgery this Monday, tomorrow, first thing in the morning to remove a mass on my ovary.  I had a second opinion scheduled at a near-ish nationally renowned teaching hospital (NNRTH) this Friday, the business day prior to surgery.  I almost cancelled it, but friends objected vociferously, and two friends drove me down.  I am so glad...  This became a total mindf*ck.  Saw the doctor at NNRTH.  She recommended cancelling at the substandard local hospital (SLH) for a number of reasons. 

First of all, the Emergency Care Unit lab report differs from what the ultrasound tech and the ECU doctor told me that night in the ECU. 

The second is the fatigue and the GI symptoms are most likely NOT related to the whatever it is on the ovary.  She has scheduled me for a GI consult.  My friend who is a doctor suspects Crohn's or IBS.  Yay?

Third, she was a bit surprised that there is a rush to surgery without having a Gyn/oncologist consult and on call to be present at the Operating Suite, and the ability to take lymph nodes and further margins that the SLH surgeon and the SLH gyn doc are not trained to do. 

Fourth- she says even the most minor of surgeries will be a long, hard recovery (because of my previous surgeries, the mesh, the adhesions, the endometriosis, etc., and she would not leave the ovary if she operates.  I am too close to 51 (the average age of menopause) and the risk is too high, potentially. 

The SLH doctor in an email communication where I emailed to communicate my understanding that he would take the ovary and he said he changed his mind and would not unless he just had to.  Wait... WHAT?  He also stated that despite my history in 2007, 2013 and 2014 of my bladder not functioning until 12 hours after the pain pump is discontinued, the foley will be pulled prior to the discontinuation of the pain pump, sorry I will have to be repeatedly straight catheterized...

The doctor at the NNRTH is requesting all records from my 2007 hysterectomy, the 2013 surgeries, and from this incident.  SLH was not interested in previous surgeries at a decent local hospital I can no longer use due to insurance.  

I called and cancelled my surgery with the doctor on Monday as I was leaving the NNRTH.  Very scary since I had to fight tooth and nail to get it scheduled in the first place.

Yeesh, what a mess.

I had a CA 125 and other blood and urine samples pulled at NNRTH before leaving town, and I have ultrasounds on the 22nd, and she is double booking to see me on the 22nd.  She has already circled in the Gyn/Oncologist on this process.  

I will keep my PCP local, use the SLH ECU if I have no other choice, but I think the bulk of my care will happen at NNRTH.  I am so done with SLH.

Then... Saturday my youngest kitty (12 years old) had the most horrible and violent grand mal seizure.  I thought she would die in my arms.  I was sobbing and felt so helpless.  She was choking, drooling, flying around, falling, peeing, slamming headfirst repeatedly into walls and furniture and screaming.  I thought I felt my heart break,  No exaggeration.  It felt like it was ripping out.  I came very close to having a breakdown.  I called my vet, no answer- they are closed.  Called another by mistake, and the connected me to the emergency vet.  Called a friend who came over and helped me get her in the carrier and drove us to the emergency vet.  They kept her 12 hours, and she did have a seizure, but they do not know why.  I came home for a while, and spent an hour napping, and an additional hour or two sobbing in bed, holding my other cat.  I was supposed to go to a party with friends, but I just could not.  I picked my sweet girl up at midnight.  She has a consult in the same adjoining state as the NNRTH this week I hope.  She is home, and doing well.  We need to get to the bottom of this.

I have not called my hoarding mother.  I just cannot.  I cannot recall feeling like this before, not even when I was divorcing in 2008 and my whole life blew apart.  
I will be fine.  Honestly, I have no choice.  Failure, or softening in any way, is not an option.  Full speed ahead.

Thank you for all your kind words and support.  It means more than I can express.  I also have the honor of having such kind people in my life.  I am simply not worthy, but I am so grateful.  The guy I am seeing has been travelling a great deal, but he has been so supportive and empathetic.  I hardly know how to react to him...

Okay.  To bed.  Tomorrow, I return to work.  I feel awful, one day I gained 8 pounds in one day, lost 9 the next.  The bloating, the GI stuff and the fatigue, and the pain from this ovary thing is not helping me stay centered, and I am not sleeping.  I have not ever really felt fragile, but I feel like I am made of cracked glass that is only holding together from pressure.  I must suck this up and get over it, now.  

Thank you for reading.  Next time will be a better one.  It has to be.  And the kicker?  I know the abusive, narcissistic, hoarding quagmire I was raised in is contributing to the struggle I have to know what I need, to ask for it, to accept it, and to treat myself gently.  And I resent it.  I resent it mightily.  And I need to get over that too. Now.  NOW.


Thursday, June 23, 2016

Most recent update

A quick note of update.  I am scheduled for surgery July 11, 2016 and I have the appointment for the large teaching hospital nearby for July 8, 2016.  

This week I have been really, really weak, tired and nauseated.  A lot of pressure in my pelvis and pain in my chest.  Surgery time cannot get here soon enough.

My hoarding mother has been absolutely HORRIBLE.  I am keeping her on extremely low, low contact.  Nothing new, just her usual BS but I know she will attempt to make this miserable, and on the rare occasions she does ask how I am, it is to leap off and discuss herself, or to make dire predictions...

At this point all I know is I have a mass on my ovary about the size of a softball.  The large cyst has burst (probably what triggered the incident that mimicked gall bladder that drove me to seek help in the first place).  I have another incisional hernial at the top of the previous repair, and they will not know what surgery entails (less invasive options are unlikely due to previous surgeries and scar tissue, endometriosis and other issues) and what is there, and if it is benign.  I assume it is, since the last one was.  The hardest thing is I am getting sicker and weaker as the days pass, and today I again had the pleasure of getting really ill at work.

Fabulous.  Now I am spending the next couple of weeks preparing to be in the hospital for 4-6 days and for assistance post.  Or I will, when I feel well enough to reach out, and to ask for what I need.  And I have no idea what that is.  But I will figure it out.  I will.  My friends will rise to the occasion if I allow them to, and I trust them to help me.

Thanks for your support.  Sorry for the continued carping.  Oh- one interesting development... I met someone who seems to be someone that I could see myself spending more time with.  What timing, eh? But there is either a positive side to everything that happens, or a lesson.  Onward and upward.  No one said life would be easy, but I think it all is worth it, and at the end of the day, that is what keeps me looking ahead.

Thanks for reading.

Thursday, June 16, 2016

Lisabeth's Update- Medical Situation

Just a quick update.  Thank you for all the lovely comments, emails, and other communication expressing care, love and concern.  I have felt really isolated and alone through this, and I really appreciate it.  It is not that my friends do not want to help, will not help, but with the delays that are happening, I have no ability to plan for my impending surgery (or surgeries) and there is no quick end in sight. 

As some may know, I was diagnosed in the Emergency Care Unit on May 26 with a ovarian tumor and a rip in my 2013 mid line incision from the removal of a nearly 11b fallopian tumor that nearly killed me.  The intent of the ECU doctor was for this process to happen quickly, and it has been a comedy of delays, mistakes, insurance delays and mistakes... But I finally got to see the first surgeon, who wanted another CAT scan with a different type of contrast that was initially blocked by my insurance, then approved, then 2 days post test, determined to be outside of network so I have to pay.  A lot.  Next, the doctor wanted me to see a second surgeon who he wants to assist him.  It took me a bit, but I got in and saw him this Tuesday.  We had a plan, I thought, and I was told in a day or so I would get a call to schedule the surgery.  Thursday at 3:30pm I still had not heard from them, and they are closed on Friday, so I called.  

Yeah.  FML.  Surgeon number one is on vacation and will not be back until Tuesday.  Surgeon number two only has 2 surgery dates in the next few weeks that coordinate, and that is July 13 (maybe) or July 20.  Three or four weeks from today.  It has already been delayed by 3 flipping weeks, so that would take it to 6 or 7 weeks.  Last time, my tumor grew exponentially in 5 1/2 weeks, enough to nearly kill me.  Every day we wait, this thing is growing, and my less invasive options for surgery wane.  

I am calling a nearby teaching hospital and I am going to see if they can get me in, but I am not hopeful.  This hospital is about an hour away from my home, so this assures I will go through this alone as my friends will not be able to help me.  The last hospitalization in 2014 I went through completely alone, a dear friend took me and stayed with me the 8+ hours I was in recovery, and another dear friend came and picked me up and stayed with me when I left the hospital early, but ye gods it was miserable.  No one to advocate, no one to check in, I got really sick multiple times and they pulled my Foley too early and I had to be straight catheterized 3-4 times, had an adverse allergic reaction to an infused medicine (that was listed on my chart as an allergy and they gave it to me anyway) and it was just miserable.  I was alone a great deal of the time in 2013 as well, but I had a private room and was really, really ill.  Folks popped in, but I was able to rest.  Eleven months later I was in a semi private, and because I could not figure out or articulate what I needed, and due to hospital over enrollment I was not in a private room as they had stated.  I went through a really invasive surgery and a horrible hospital experience totally alone.  No one to blame but me.

And this time?  Yeah.  I suspect 2014 history is going to repeat itself, either out of necessity because I am out of the area, or because I am just so freaking overwhelmed, frustrated, and have no ability to plan since I do not know what is happening, and the time my surgery might happen will ensure that key folks may not be available... That is the current insurance or surgeons do not allow this to progress to a emergency point like in 2013 where I go into the ECU and end up in surgery a short time later with little delay.  The other thing that is scary is due to mergers and insurance crap I lost every single doctor I had, and these new doctors are not interested in my previous medical history and the past surgeries, and from the conversation today a flip comment was made that the incisional rupture may or may not be fixed if the surgeon coordination cannot be worked out.

SAY WHAT?  He stuck his finger in my abdominal wall up to his first knuckle.  

Sorry for such an unhappy post.  It will take me a day or two, but I will 'suck it up, cupcake' and move on.  I am planning on using the grievance procedure with both the hospital system and my insurance, and I will call the other medical provider ASAP.  I am working on several plans at once, but why does it have to be this hard?  The ECU doctor and the radiologist that evening were concerned about the growth rupturing, and the ECU doctor was concerned enough he called surgeon number one at home at 4am to try to get me in that day by 10am.  I was seen a week and a day later.  My second CAT scan was delayed from Friday to Monday, and I had to wait another week for the second specialist, and now another week has passed.  

I have good days and bad days, but I am exhausted and have a lot of pain.  I saw my primary care physician on Monday, and my blood work is a bit wonky due to this.  He assumed the surgery would happen by today, or early next week.

Again... I know I am doing this to myself, but I am obviously destined to walk alone through this the way this is playing out.  And sometimes, I am so tired of it.

But... I have little other choice.  I choose to progress onward and upward, and hopefully there are no other unpleasant surprises.  At this point we do not know what this growth/tumor is, and what its nature is.  The delay on this is not helpful if this goes badly, which I honestly do not expect.  

I just need this over.  I need to start rebuilding, healing and training for my marathon and the next month running goals.  

Thanks for reading.  Sorry so down.