Embracing life with chronic pain.

Posts tagged ‘medicine’

Insurance Update

Well….low and behold…my hiccup was actually caused by doctor’s staff.  Person responsible to place the order for the Lupron did not follow through.  Found this all out when going to appointment with my other specialist (colorectal specialist).  Talk about frustrating!

The positive side is my colorectal specialist is in full support of the Lupron injection.  He is hoping, like I am, that the injection along with the Neurontin will take care of the pain/discomfort I am in right now.

He said he will be in total support of removal of the ovaries and tumor if the injection is successful. It will mean that we have found the “culprit”!  Now I am anxiously awaiting the call to set up the appointment.  I will most certainly call my other doctor’s office Monday morning if I do not hear anything tomorrow!

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Spoke with Doctor Today

Well…my story is not yet over. The additional fluid build up that we anticipated was happening is not the case. CT Scan showed no additional fluid…just the small amount we knew was left.

I am once again causing my docs to scratch their heads. I could be dealing with residual nerve pain….the nerves continuing to fire even though situation is cleared up….will be seeing my other specialist…just waiting for appointment time. Docs are also talking…in the mean time, I have to take pain meds….am told that I must keep on top of the discomfort.

I am not good about taking drugs. I have always just focused my mind and selected to “ignore”…however, with current situation it is not in my best interest so I will pick up my meds in the morning and do as doc asked.

Hopefully adding the drug treatment until we can get what is going on truly diagnosed, will allow me to get some much needed rest. I know the reduced sleep is never good. Must sleep to allow the body to recover. What a crazy cycle our body’s can get into!

Why I Started This Blog

A few nights ago, our son was not quite himself.  After speaking with him for a while I found that he was upset about my current health battle….it has him worried….scared.  He is ready for me to be back at full speed!

Once he was in bed, I went on-line to find some resources for him.  I know that I have spent a lot of time over the last 14 years researching……especially the last 5 years when my health issues all came to a head. I was greatly disappointed in what I found.  I could not find much for kids of parents with illnesses or surgeries.  (Yes…a lot for cancer….however, my situation does not fall in that category.)

As parents, we have been honest with our son….talking to him…making sure that he has met my doctors…..letting him see that I have support and people working to make me better.  However, he sees his friends….with their parents going about their daily activities without the restrictions that poor health….or intermittent health issues cause.

I have dealt with anal fissures and spastic anal sphincter for over 14 years…..numerous procedures (fissurectomies and even sphincterotomy)….dealing with flare ups in between.  Then all came to a head about 5 years ago……extreme pain….trying to work and keep up with family life! (We are avid outdoorsmen!)  Three years ago doctor tried botox injections…..nothing worked….nothing even came close to touching the constant, severe pain…finally diagnosed with rectal prolapse!

In August of 2011, had my first major surgery…..total pelvic mesh repair with removal of uterus and colostomy (at which point was considered temporary).  That took care of the prolapse….however, it did nothing for the pain.  The spastic anal sphincter would not relax!

Within a few months I developed a peristomal hernia…..that in addition to the horrific pain   I was in was just overwhelming!  No medication…..no pain management/therapy made a difference.  I then underwent my second surgery to repair the peristomal hernia.  It was a relief to just be back to my constant, painful life.

I spent nights after our son was in bed searching….trying to find someone somewhere who had dealt with something similar……then finally discovered someone in Europe…..armed with his story and results I spoke in earnest with my specialist to take the ultimate step.

In October 2012,  I underwent my third major surgery….to remove my sigmoid colon and anus…making me a permanent ostomate.  I woke up after surgery with NO PAIN!  I wanted to shout…to dance…..my doctor did not believe me because the difference was so extreme!  WOW!  The first day in so many years with no pain.

My strength was returning….I was starting to exercise….we as a family were talking about camping trips we would be able to do…..then I felt discomfort in my abdomen.  Well….I figured that my ovaries were just acting up because of my hysterectomy and the hormonal support quitting.

Saw the doctor who ordered an ultrasound….then within a couple days I was back to the doctor to be told that I had tumors on my ovaries!  Talk about being hit with a brick!  Due to my unique situation (so many major surgeries and all the repairs inside), I was scheduled to meet a new specialist…..

New doctor ordered a CT Scan….wanted to rule out any possibility of fluid pockets or a combination of fluid tissue growth.  The scan showed fluid!  Two large pockets….one on the left side the other on the right.  So next step was what they call a CT Biopsy…..doctor drained a lot of fluid and then I was outfitted with drain tubes…..that I had for almost 2 weeks.  Felt better with having the pressure relieved.  There was some fluid left…..the hope was that my body would absorb the remainder.

As you can guess….my story is not over.  The discomfort returned quickly.  Follow up appointment resulted in scheduling another CT Scan…..the guess is the fluid is building back up.  Looking at another round of tubes followed by a scarring agent injected to the sites to prevent further fluid build up.

Doctors really want to put off another surgery since I have had so many so close together.  I am now anxiously awaiting the next step…..hoping for the tubes and scarring agent!

Our poor son now sees me doing all I can to try to keep up with work and doing what I can with him….however, I must rest so much in the evening and weekends due to my body’s status…..

I hope that my story will help you!  That this blog can become a helpful tool for other families dealing with health issues….that are disruptive…no matter how much we as parents try to be “Super Mom” or “Super Dad” as we battle away with our bodies!

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