Losing Hope

[lulu747]

I'm posting a new thread so you guys don't have to read all the way through the last one and I just REALLY REALLY need support right now.  I woke up in terrible horrific pain this morning after my crazy weekend of work on my year end show.  It filled me with joy and pride but absolutely ruined me physically.  I woke up screaming and crying and my man gave me my morning dose of long acting hydro which didn't even touch my pain.  Then I received a phone call from my surgeon's office with this news.  Her father is having a medical crisis and she is leaving the country until mid-July.  I have been holding on so hard waiting for our phone appointment on Friday which is now cancelled.  I am beside myself.  I don't know what to do.  I can't stop crying.  I still have no surgery date and now she is gone and I cannot even speak with her and tell her about the HELL I am going through.  I am so scared, so upset, so worn down from this constant pain.  Also I am afraid I am already developing hyperalgesia from the pain meds.  I have been on daily doses of hydromorphone for 6 weeks now.  I started at 4 mg and am now up to 16 mg as my pain and symptoms are increasing.  Yes there is already dependence which scares the crap out of me.  Now I've developed pain on my lower vertabrae that is so bad even my t-shirt touching it makes me wince.  And my left hip bone feels like a knife is stabbing it all the time.  I don't know if this pain is related to my endo pain or if it's something to do with the meds.  Anyone have any ideas?  WTH am I going to do???  I can't talk to her until the second week of July.  I go next week to attend a pain management workshop and speak with a counsellor and pain physiotherapist.  I just feel so hopeless right now.  I don't know how much longer I can live like this.  I am trying to be positive but it's hard for me to understand how this can be happening.  I know the Universe never gives you more than you can handle but I really don't feel like I can take this anymore.  I don't know what to do.  Please help.

[lulu747]

Okay so the past 24 hours have brought some blessings and some more serious burdens.
Let's start with the blessings :
8 hour pelvic pain seminar with a pain psychologist and pain physiotherapist and 12 other women suffering from this hellish disease.  My heart broke for the 23 year old girl who had an improper surgery done and is so badly scarred her only option is a full hysterectomy and a spinal nerve block for pain.
My heart broke for the woman who is in her early 40's and underwent an improperly done hysterectomy by a surgeon who not only DID not remove her endo but failed to remove her right ovary.  She finally got referred to this clinic and now has a little hope.
With stage 4 endo and 8 years of experience with this disease and a patient at this clinic since 2008 I was the most educated with the best care.  However, I still learned some valuable tools about coping with pain without drugs.  I learned about pacing and not catastrophizing which is huge.  Our brains can actually create more pain for us than we are actually in.  I have decided to return to a gentle restorative yoga practice.  After the gentle stretching and meditation I practiced yesterday I was in far less pain and only need HALF my rx'd dose to get a good night's sleep.

Now for the burdens....Ahhhh MH it is hard for me to type this.  I had two sleepless nights this week and the stress of worrying about money/pain/surgery has my immune system depleted.  I have been alternating between constipation and diahrrea and as a result I have developed a number of deep anal fissures that are unbearably painful as well as a mouth full of canker sores.  Now, the bowel problems COULD be caused by the endo (it's very common) and the canker sores COULD be caused by my stress and lowered immunity.  However, I went to a walk in clinic and saw a very lovely doc a few hours ago who is concerned I may be having a Crohn's flare.  I know that this is highly probable but am praying praying praying that it is not the case because how the HEL* can I deal with both of these things together???
For whatever reason I am suffering right now.  A LOT.  More than I have ever suffered.  I am just reminding myself that this, like everything, is temporary.
I pray that my blood work comes back with normal counts.  I cannot bear the thought of adding prednisone to this awful cocktail of drugs.

Happy Friday night everyone.  Lu is feeling pretty sorry for herself.  She is down.  But she's not out.
I will never stop fighting.
Lu

[lulu747]

Just got an email from the Pelvic Pain clinic.  It was a follow up to my visit 3 months ago and asked me a bunch of questions to evaluate my pain and what was working/not working and what symptoms were increasing.  Hopefully THE EXTREME increase in pain and symptoms will help them realize that surgery ASAP is NECESSARY.
I'm feeling angry this morning.
So angry.
End vent.
Lu

[lulu747]

((VICKI))
I hate suffering too.  But having improper surgery here, or bankrupting myself and my family to have surgery in the states is not an answer.  I double pinky swear promise that if I don't get a surgery date in the next month I will be moving heaven and earth to come stateside to get the surgery done by a proper surgeon.  I have already emailed the Centre For Endometriosis in the US to see what their policies are on out of country patients.  I am waiting for a response.  If I cannot get a surgery date next week when I go to the clinic for my appointment I will do whatever I have to do to get the best care I can.
Love you Vicki.  My suffering is lessened by all of you who give me their support, kindness, and wisdom.
xo
Lu

[vicki595]

It DOES sound crazy...LOL.   My only point of reference in a situation like this is how it would be handled in the US.  I'm spoiled by our healthcare delivery system.  In spite of greedy insurance companies and a ridiculous Affordable Healthcare Act, we have some of the best physicians and specialists in the world here and no one waits for care in an urgent situation.  There are endo centers on both coasts and the Mayo Clnic in Minnesota has a world renowned center.
But, you're there and have a plan going forward so hang on and please, please take enough pain med to handle your pain.  As I said, I hate suffering!
Godspeed-

[lulu747]

I know Vicki and I love you for that.  I would be posting the very same advice you are giving me to someone else.  I wish there were another way, and I won't stop looking for one.
I know this may sound crazy but my best friend is a psychic- she says July 15th is my surgery date.  She has made many predictions in the past that are accurate so I'm gonna hold on to this for hope.
Bless you Mama Vicki
xo
Lu

[vicki595]

I do understand your position. I understand you want that one, particular surgeon, and I know you want to keep the integrity of your reproductive organs intact. I don't like the length of time it's taking until you get the surgery and you still don't have a date. That's what I can't support.

But, I support you and your decision to wait it out. I can accept your choice. Just know that I'm an advocate for people working the medical system. I'm a fixer and a caregiver. It's part of who I am and what I do. I think you know that.

Mostly, I just want you feeling better. I hate suffering!  Be well. xo