The long story: Where I am, and how I got here. (Sept 09)

Hello friend and thanks for reading this.

I realize I need to update my sidebar:what is wrong with you.  Not only have things changed, but I’ve had new friends read this and still be confused on “what I have”.

So here is how I describe to people what I have.  Read the short story on another post here.

Pain sucks.   And you can’t see it, so I’m the only one who knows when it’s bad or okay.   Which really sucks.. 

What I have is permanent chronic pain in my back and left leg/foot.  I have chronic pain everywhere a bikini bottom would fit.   So far I have not been told that is permanent.   I still have pain my last surgery (a simple rectocele with a surprise hemorrhoid and fissure surgery).  I also have pain deep in my pelvis.  I have to wait 6 months after my last surgery to do further investigation of this pain.  I’m praying for no permanent nerve damage.    On top of this, I have a-typical, transient migraines.  Meaning they hit with no reason, and   they leave me in more pain that all my pain together,

I find that laying down relieves much of the pain in my pelvis and legs.  So I carry a pillow with me, and lay down when I can.  This is because when I stand or walk, I feel like I’ve been kicked between the legs with a baseball bat.  A bat so large that it hit my thighs too.    As you might expect, this does not feel good.  So of course I do what I can to avoid the pain.  I lay down.   

I look fine.  I look healthy.  But inside I’m a jumble of mixed emotions.  I can feel well enough some days to see a movie.  Other days I can’t even answer my phone from bed.   But I look fine, so must be feeling better, right?

For any guys, after 4 kids and so much pain and surgery, I'm not embarrassed about anything.  I only tone it down for my audiences comfort.   You have been warned.

In 2008 I was pregnant with #4.  2 months along, I felt like I was about to deliver.  Later I would describe the pain as “hit between the legs with a metal baseball bat.”    Midwife  said it was pelvic floor varicose veins and it would go away after birth.  It didn't.  It's been two years since then, and I still bring a pillow everywhere.  I lay down whenever I can.  It usually that helps the pain.  Sometimes it doesn't.   Getting thombrosed external hemorrhoids and a subsequent surgery, I had even more reason to lay down, and even bring a cot every where. 

Also during the pregnancy my gallbladder started to fail.  I didn’t gain any weight, and was on a diet of oatmeal, Jell-O, beans and rice.  During a painful labor with a failed epidural, I herniated a disk. 

So my 18 months of medical hell abbreviated in to “surgeries” is this:

Nov 2008 Thrombosed External Hemorrhoids surgically removed

Feb 21 2008 Baby Mark born

April 17 2008 Gallbladder taken out

May 2008 Rectal fissure surgery

Sept 2008 L4/L5 discectomy (sp) and clean out of left SI nerve root (lots of hip/foot pain)

April 17 2009 Prolapsed Rectum fixed, cystocele (bladder muscles sew back together to regain function), uterus lifted and sew back into place....all thru a c-section like cut.

Oh, I forgot that I had my tubes tied since they were all up and in there anyway.  Doc’s told me I would never recover from another birth.  But it took prayer and confirmation from the Lord that our family on earth was complete, then I agreed to be snipped. 

June 22 2009 Rectocele fixed, and surprise hemorrhoids and ANOTHER fissure fixed.

So everything should be back into place.  But I still feel like I've been hit between the legs with a baseball bat.  It moves down inside my thighs, and up into my cervix.  Sometimes I feels like there’s needles in my cervix.  Other times it feels like my...hmm...what's the word.  I don't have time to look up a map of the female body, but I think it's the labia  are burning or ripping. 

I've had 2 numbing shots to the pudenda nerve.   THEY WORK GREAT!! pain is gone for 2 whole days.  It only lasts a week until I'm back to normal pain.  But the break makes the pain more bearable.  (update, had another one end of Aug, didn’t help at all!)

The back surgery left me with permanent nerve damage to the left SI nerve root. Since it’s the root, it will NEVER heal.  I have constant foot pain/hip pain.  Like all pain, sometimes I can ignore it.  Sometimes it flares up to unbearable.  On top of that, I've always had a bad back, but since the surgery I've needed a TENS unit or medical patches to help the pain. 

I'm working with a team of chronic pain management people.  They are the people to just cope with pain, after all else has failed.  They do not diagnose.

I do plan on doing more testing to find out why I hurt.  But my docs says I must wait 3-6 month after this last rectal surgery's scar tissue to set before they can help me put the puzzle pieces back together.  

Even with pain med (right now it's Oxycontin, Lamictal, Lyrica, with Ketamine for breakthrough pain) I'm still in pain. 

After the first two surgeries I was still on lots of pain meds.  It was because I was doing too much.  We used all our Microsoft nanny hours, and had help for 2 weeks.  My husband even took time off work.   We did need someone to watch the kids all day, but we quickly realized it wasn’t going to be Mom or Dad.   Once we realized this was needed, we’ve had help while Grant is at work.  This has allowed me to reduce my pain and rest in bed.  And a good day, visit a friend or run an errand.   What we realized we needed was a nanny.

We've had nannies for over a year now (Since May 2008).  Every time I'm almost better, another surgery comes up.  Our current one has been amazing.  Cooks and cleans.  Hot dinner every night as I come out of my cave, and Grant comes home from work.  She takes kids, and sometimes me to doctor appointments.  Oversees kids chores and homework.  We are lucky to have found her. 

So since pregnancy, I knew I had a prolapsed rectum.  Pain and bowl issues made that surgery a higher priority.  And having a good nanny, we wanted to do this while we had help for the long recovery.  For about a month after surgery, I was just fine.  The pain went away!  Then I had my first period.  I later found out I had a huge ovarian cyst on the same side I had ovulated from...so I don't know how much that made a difference.  All I know was, the pain was back, like I had never had surgery.  Even upping my pain meds did little.  The next period was bad, but less bad.  And periods since them are less horrible, but still spike my pain.  Some docs talk about taking out my uterus.  But like I said, testing will take some time.

I want to be 150% sure that another surgery will help.  Waking up from this last one was horrible.  I could feel that every cell, every organ, every nerve had been taxed to the limit.  I knew that 5 surgeries…and another ~6 sedations for tests…was too much for my body.  I needed to wait.  I needed to heal.

I'm exhausted.  I'm depressed.  I'm missing out on so much. It adds up to  71/2 months I couldn't hold my last ever, new baby.    On top of that, resting means days that I miss with him.  So many firsts were for the nanny or my kids. 

Even longer that those 71/2 months,  sex was forbidden.  That sure ruined our last anniversary.  I'm lucky to have a strong, stoic husband.  He's been mom and dad for so long.  And held me up (or together) too. 

Imagine standing next to a  crying baby(don’t lift him!), and “refraining from embracing” a husband because you don’t want to ruin the doctors careful work.   Do that 5 times in 15 months.  Sucks doesn’t even cover it.  That is why swearing in now regular in our home. 

I don't have a diagnosis for the pelvic floor pain other than the general "Neuropathy" and "Entrapped Pudenda Nerve"  and the "Permanent Nerve Damage to Left SI nerve root".    All of my gut abnormalities have been fixed.    And now I wait.  Wait, in pain, for 3-6 months to do the next testing to tell me why it hurts to stand, to walk, to sit, to drive. 

To drive...that reminds me that all my cars have pillows.  So if someone else can drive, I lay in the back seat.  Sometimes squished next to a baby car seat.  But that is still better than even laying back in the front seat. 

I'm also working with a naturopath who gives homeopathic remedies to calm the cells, help in healing, and get my nerves to calm down.  She also does body work, that leaves me feeling human for many hours. 

Calming my nerves.  It's funny that when you talk about someone being nervous or having frayed nerves, it means that they are mentally struggling.  But for me, calming my nerves really means that the physical nerve pathways in my body are freaking out.  I have good and bad days, but change (doing something different) is sure to put my nerves on edge (ha, another mental term).    So pain turns ON very easily for me, all over my body.  But turning it OFF is a different matter.   It’s often an impossible matter.

I've already blogged here and here about other things I've done for the pain. 

So that’s me.  Oh, and to end the saga to you, three of my long time docs said that I look better than they’ve ever seen me before.   That was in September, and I was free of the worst of my pain till October.   Now it’s back.  Different, but still back. 

The saga continues, but only time will give me enough reflection and knowledge to write it down.