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Some scary things, but some good things too.

Aug 28, 2014 - 3 comments

Hi friends-

I've been MIA this week because it was registration week at my school.  I know I wasn't supposed to be busy, but I also had to get the money in the bank account before going away on vacay (tomorrow)
Unfortunately, the new hormone treatment is NOT working.  Two nights ago I experienced the worst pain I have ever felt in my life.  I seriously thought I was going to die, I probably should have gone to the hospital but it was the middle of the night and I couldn't even bring myself to wake Andrew (how he slept through my screaming and moaning is a mystery to me)
Anyways.  I was very scared and the lymph nodes are growing and growing and the pain is just...Mind blowing is the word.
I even took naproxen which is a big no-no but the pain meds weren't touching it and I was desperate for relief.  The pain continued all the next day, so I hired someone to help me do registration and all I did was sit there and enter data into the computer and take money.  Unfortunately, my small students do not understand I'm unwell and they insisted on coming to see me and climbing all over me.  Even when their parents admonished them to "Not break Lu" they flung themselves at me with such joy and love....Well....It was hard not to hug them back even though it almost made me scream every time.
The night before last.  Same pain, no sleep again.  Got up at 9 am finally and realized I was bleeding.  SH*T.  Called surgeon's nurse.  She said she was seeing the doc today and would discuss.  I may have to discontinue hormone YET AGAIN and bleed it out and start over.  It may be because I started a day or two late due to the fact that the pharmacy did not have this drug and had to order it in....OR- it's just not strong enough to suppress this disease and I need to do the Lupron.  I am praying with every bone and cell in my body that this is not true.

Last night at 6 pm I finally finished work for the year.  I am officially on vacay so of course Andrew took me to the doctor.  She examined me and felt my nodes and is VERY concerned.  She said she's never seen so much inflammation in anyone's pelvis.  I went for full blood work up and will have to wait until Tuesday (due to long weekend) to see whether I need to go in for biopsies.
She is just so worried.  She wants me to increase my pain meds but I said no.  I'd just do less.  I know Connie, I know I know I know and I'm sorry.  I did not slow down this week.  I tried to- I asked everybody I knew for help but NO ONE could help me.  A had to work, my mom had to work,my dad had eye surgery, and all my close friends are out of town.
I tried gently massaging the nodes with aromatherapy oils but I can't touch them- they hurt so much I scream.  Last night laying in bed with Andrew it looked like I had a baby inside me kicking.  You could actually see it spasming through my nightie.  So weird.

I haven't received a call back and it's after hours so I guess she will call me tomorrow.  We are supposed to leave tomorrow afternoon but if I don't sleep again we are going to stay home so I have a full 24 hours in bed before we go away.  

The good news is I have full registration and made good money at the box office so money is not a worry for the next couple of months at least.

The other good news is I am off work entirely until Sept.8 with ONE MONTH TO GO UNTIL SURGERY.
I am concerned about the nodes, obviously.  The surgeon says it's not from the endo, and my GP says it's not from my autoimmune illness as I've had my RA factor tested 3 times in the past 4 months and it is normal.
I wait and see again.
I don't appear to have any kind of infection, if I did I would be running a fever and it would have been discovered earlier as I've had lots of blood work done and my nodes have been like this (not this bad but bad) for 3 months.
I am just taking it one minute at a time and taking as good care of myself as possible.
I may have to cancel the vacation if I don't get better, but my worry is that it's very hard for me not to work when I am at home.  I only ever let go completely when I go away.  And I'd really like to be in that cabin on the sea with my folks and A and our dogs for a week.  I think it would do my spirit a world of good, and therefore my body a world of good too.

That's my update.
Love to all...

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9880688 tn?1414115647
by PurrfectlyKrazy, Aug 28, 2014
Oh honey...I'm so, so sorry that you had all that pain and that the hormone treatment didn't work!  I'm glad you don't have to worry about money right now or working but damn...I'm really worried about you.  Your poor body is going through hell.  Are you even going to be able to go on your retreat now?  I know if you don't it will be such a disappointment to you because you've been looking forward to it.  Please, please let me know if I can do anything for you.  If it is within my power I will.  xox Hugz and lots of prayers  Kaye

1926359 tn?1331588139
by lulu747, Aug 28, 2014
Awe Kaye-

Bless your heart.  I am going on this vacay come hell or high water.  If I'm going to feel like crap I may as well do it in a beautiful house on the ocean rather than my muggy condo in the city- BUT_
If I don't sleep tonight things may need to be re-evalutated.  So pray I sleep.
How are you feeling?  Is the disease under control?  Pain?
Hope so.

9880688 tn?1414115647
by PurrfectlyKrazy, Aug 28, 2014
I'm doing much better.  The pain is manageable now.  I got a massage today which help at least with my shoulders and neck.  Compared to you I'm doing awesome!  I'm going to pray hard that you get some sleep tonight.....I can't afford a you gotta make it for the two of us.  When you come back I want to hear all about that beautiful house on the ocean!!


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