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.

'Wow... seriously?' is most likely NOT an appropriate title for this, but...

First of all, it is ironic that I picked a Cafe' to get some blogging done, and I just realized that the table of young women near me (7 of them) are some sort of group that appears to be a group targeting folks with hoarding behaviors.  They are discussing their meddling families attempting clean ups.  It is fascinating, but triggering.  I am moving to another table...

Anyway, my hoarding mother's latest.  A neighbor's tree fell on her property, and according to her, he is an absentee slumlord who is inaccessible.  She got a tree trimming service to come trim the tree back so she can get out of her detached garage, then they returned the next day to haul away the tree.  This all heralded the normal amount of guano-loco that you can imagine.  She has been calling local attorney's offices, as she plans to sue them too.  Yay??

That same day, her garage door failed.  She had to call someone out to repair it.  The opener is over 25 years old, and may be older.  Now, she has decided that the reason the part failed is someone forced it up to place the items they stole from her small 'storage barn' (shed) from the yard.  She claims they put something in the lock after they forced it open, so she can no longer open it.  My question was... how does she know what was stolen if she cannot open the door?  That was ignored.  So now, whomever did this forced her garage door open, placed those stolen-from-her-objects in the hoarded garage behind her car, with other things that are not hers, along with 'writing'.  She did not read it because she is not getting close to it.  I asked her if she called the police, and go the usual bluster and excuses.  I ended the call.

Just.  Seriously?

Sunday, June 5, 2016

I simply cannot win...

I should have known, and it seems that I will keep having the same lesson until I learn...

Long story short, I have been having some health issues, that I have not yet had diagnosed.  They suspected an autoimmune issue, but I have been unconvinced.  In training for my upcoming marathon, I noticed my heart rate has been off, and I struggle to maintain endurance and speed goals that I should be surpassing, but I figured it was whatever was happening, and I now have a follow up appointment in mid June.  I started having dizziness a few weeks ago, and dismissed it as the residual damage from a huge fallopian tube tumor in 2013 that nearly took my life.  I also have had some other similarities to the days leading up to the discovery of this tumor, but I shook it off.

Why?  Because I am obviously stupid.  

So on Sunday May 22 I woke up sick, and it progressed quickly to everything exiting my body in one of two unpleasant routes, sometimes at the same time.  I had 36 hours of pain and vile GI stuff, and by Monday afternoon I was back at work.  Tuesday night I felt pretty good, and Wednesday was a repeat of Sunday, but with a lot of chest, back and lower right abdominal pain.  I finally called the tele nurse, who instructed me to go to the emergency care unit ASAP, she was concerned I might be having a gall bladder attack.  My wonderful friend who brought over groceries on Sunday so I would have the BRAT diet took control and drove me to the hospital.  Long story shorter, I have a small amount of sludge in my gall bladder, but they caught a glimpse of something in the CAT scan.  The ECU doctor thinks it is a softball sized ovarian tumor on my remaining ovary.  The doctor I was to follow up with is trying to determine if it is that, or a bowel tumor or a couple other equally unpleasant options.  Most likely, I will be going under the knife soon.  Very soon.  

My insurance is being a pain, and has slowed things down considerably, along with a couple of mistakes by the doctor I was referred to.  I am hanging in here, but I have good days that are not the best, (weak and a bit of pain) and bad days with nausea and vomiting that come on suddenly, along with passing out.  It is fantastic fun.  

My perspective is, whatever this is, I will deal with it and make the best of it.  Am I pissed that I am most likely now going to miss several goals that I set such as:

  1. Running 1,500 miles in under 12 months
  2. Running a full marathon this year (26.2 miles)
  3. Running an obstacle race in July
  4. Running a Spartan in the fall
I will meet these goals, it just may be next Spring and Summer.  I also know that there is a possibility of malignancy if this is a tumor, and that may require more treatment and surgery.  I will cross that bridge when I come to it.  

I decided after a few days that I would tell my hoarding mother so hopefully she would dial back the crazy for a few days... HAH.  

She immediately responded with "Oh no.  Your dad..." and I cut her off.  I am very aware that I am now 47 and my father died in his late 40's, thank you not so very much...

Her next statement was "Are you in pain?" and I replied that yes, I had pain, and I was given major painkillers but I am not taking them.  She then asked if my 'belly' hurt and if it was 'puffy' and then stated she wondered if that was what was wrong with her... blah blah blah.

I ended the call.  A co-worker called that conversation to the tee... Yikes.  So now, I am traversing the medical diagnosis process and trying to keep work balls in the air, and I have not told many folks much since I know so little.  But I am really ready for this to be over, and to move on.  

I am still running 6-7 days a week, albeit a bit less mileage and speed, and I am working shorter days but doing my level best to keep things moving forward.  I am also spending a lot of time with friends, even if they do not know, as I just do not want to stew in my own juices, I choose to spend time with fun, positive and uplifting people.  

Keep your fingers crossed for me.  No one said life would be fair or easy, but it is worth it.  In my opinion, everything that is worthwhile is sometimes a struggle.  I continue to live life at full volume.  I am now planning a trip to southern Italy with friends in 2017, and I will see friends in Florida in late Summer.  

My life, my terms, no compromises.  I refuse to live life on the 'safe side of the street' or 'look at it as opportunity lost' like my hoarding mother.  And I will learn this lesson.  Before it is too late, I will learn and integrate.

Thank you for reading.  I will post an update when I know more.

Saturday, June 4, 2016

Another episode of... From The Mouth Of A Hoarder!

Sharing a recent bit of craziness.  My hoarding mother has a mobile phone.  Not that it does her much good, as she refuses to give the number out, keep it on, keep it with her...  You know, somehow be part of her own solution.

So I called to check in.  And she starts off with her normal "I am so mad I could just KILL" bull crap.  She informs me that she was curious after having a mobile since 1995 or so, as to what her voice mail greeting sounds like.  So she called it.  And promptly went off the deep end.  It is a standard US major carrier that says something to the the effect of "You have reached..<insert my hoarding mother's name in her own voice> please leave a message."

Oh.  The. Horror.  Her name is out there for everyone to hear!  The mobile provider did this!  She called and spent hours on the phone arguing with random people who all told her the same thing I did.  No one did that 'to her' or 'for her'.  She did it.  She was furious at the 'smart asses' that 'were more interested in telling me I was wrong' than fixing it.  A person did tell her how to change her outgoing message, but that one said her phone number!!!  Jesus wept.  She finally found the option to do a personal greeting, and said that the phone now says "You have reached SALLY..." 

I explained to her that likely that she set that up in 1994 or 1995 and forgot, but I hear that message in occasion, and it is indeed her voice.  I got a lot of huffing, puffing and harrumphing type of noises, and she changed the subject and got off the phone quickly.

Before she got off the phone she wanted to know if she should buy a new spare since hers has been in her car since it was new (1994) and she wanted to know what she should do about getting her hearing aid serviced since they are in the same office as a doctor that discharged her from the practice, and according to her, she is not to be on their property even thought she did nothing to cause it.  (I remember the incident that likely resulted in that refusal of service, and it was earned... revisionist history much?)

Ai yi yi.  I have to laugh, or I would scream.  Thanks for reading...

Friday, June 3, 2016

My Hoarding Mother- the Godfather Wannabe

This has not been a spectacular week.  Ergo three posts in quick succession.

I get a text from my hoarding mother's neighbor, asking if I can call her.  I was in a meeting with my management staff, but I called as soon as I dropped them off at the office and went to park my car.

ARGH.  My mother called her, and was being cagey and obtuse.  She finally whisper-asked "Do you know anyone that would do something, well, ornery?"  The neighbor heard her, but made her ask a couple more times, and each time my mother asked a different way... calling it 'devious' and 'illegal' and mumbled something about she needed a 'bad' person to even things out, she was tired of the harassment she is receiving from a couple of neighbors.  I shared with the neighbor that my mother called yelling the other day that the hated neighbor "in the turn" came into her yard and stole her 40 year old tiger lily bush and it is now in his yard.  The neighbor replied that she has been past her yard, and there is nothing dug up or missing, and the things she is accusing this man of stealing are still hoarded in her yard.  Shocker...

The neighbor told her NO... All the people she knows are good, and recounted my hoarding mother's other attempts to 'hire someone' in 1995 and again in 2000.  I was aware of both since she had also contacted former friends of mine who she considered to be 'edgy' or 'bad'.  She was trying to find someone to harm my soon-to-be-first-ex-husband, and trying to find someone five years later to break into her estranged sister's home and dognap her beloved dog... I will not go into details what she intended to do with the dog, but it was soulless and horrible.  She was never able to execute either plan, and no one will speak up to law enforcement because they are afraid of her and what she personally might do.  

I urged the neighbor to talk to the chief of police in that town, but she is afraid that will result in a scorched earth reaction.  Ugh.  I feel so helpless to do anything helpful.  I waited a few days and called her, and she casually asked the name of a friend from high school and college that she considers 'questionable' and got very huffy and defensive when I asked her why... and did not provide her any information.  She will find him I am convinced, but we are connected on social media and I know he will contact me.  I suspect she will also contact others, who will reach out to me.

She is dangerous.  This is why I keep her very low contact, and have not gone no contact... but that day is coming.

The neighbor echoed my (second) ex-husband who is one of my best friends.  In the past month they have both stated they wish she would just quietly and quickly pass so I can be free.  I do not want that, but I understand the frustration and the caring for me that is behind such a terrible sentiment.

This is not going to end well.  My hope is my mother does not harm anyone else, and if she has to harm someone, that it is only herself.  I am reaching out to the police chief (who I went to high school with) to 'blue sky' this situation.  If I can do something to prevent harm to others, I have to.  

Wish me luck.