The 5 stages of GRIEF, are not necessarily done in order.

I have been working on Part 2 of my headache post, but was rudely interrupted by this new diagnosis.

I actually think I might have flip-flopped through the stages of grief, sometimes having more than one stage visit me a day.

Okay, so I have had to go far beyond Google for the answers I needed to what exactly "Stiff Person Syndrome" is.

Over the years, I have collected Medical Journals, and have multiple paid subscriptions to all of those "scientific study" websites that only give you abstracts.  (unless you pay)

I started doing this when, 5 years ago, I was told I had some "female disorder" that ended up being Chronic Appendicitis!  I ended up diagnosing myself after almost 2 years, and 19 doctors.  I had an exploratory abdominal laparoscopy, where the doctor found Stage 4 Endometriosis.  It was ablated, and I was sent home to recover.  I never did.  More doctors later, I had another one, more endometriomas were found, and removed.  I tried to explain to these doctors that I was still in pain, but no one would listen.

So, I did what anyone with my personality would do.  I made a list, and forced my regular doctor to perform every test I could think of to rule stuff out.

Finally, I drew up a legal paper, explaining that I would not sue, if a surgeon would just open me up and LOOK at my appendix.  That was on a Tuesday.  I took it to the head surgeon at BWMC, a hospital that didn't have any part of my previous surgeries, and I was in surgery AGAIN 2 days later.

I now have 9 small scars in my abdomen because of this.

When I was wheeled out of surgery, I was groggy, in pain, and the surgeon was actually waiting for me.

He looked sad, and apologetic.  He apologized for every other doctor that didn't take the time to explore my intestines.  He said that sometimes they don't, because there are miles of them.  I was a lucky girl, because my appendix was moments from rupture.  He was surprised I wasn't septic, and the reason he looked sad, was he knew that if it had ruptured, I would have ignored the severe pain, popped a couple of pills, and died.  (I will leave out the awful part of not knowing that stopping pain meds would make me sick...)

So, anyway, this is how I learned to become my own advocate.  I've said it before, and I will say it again.

They call it the PRACTICE of Medicine for a reason.  No one is perfect.  I understand that.

So, this brings me back to my original point, I have medical resources that most people don't have.

Sometimes, I wish I WAS limited to Google! 

When I was first told by my neurologist I had Stiff Person Syndrome, I didn't flinch.  It really doesn't sound that scary. I just figured it was why I couldn't stand up straight, and why I kept getting muscle spasms without any trauma.

It actually took me over a week to look into it.  When you have an auto-immune disease, it tends to spawn others, so, I wasn't that worried.

Then, when I went to my regular Pain Specialist appointment, he saw the new diagnosis, and looked at me like he wanted to hug me.  He talked about some pump for Bacolfen, once we titrated my meds to a certain level.  THAT was when I had questions.  He said he has only met one other person with it, but it was bad.

Not many DOCTORS even know what the hell it is...So, the research started.

Things started to make sense.

He's the "in a nutshell version".  And no, I am not writing this to make you feel sorry for me.  I want to educate people, and fight the odds.  Even though the odds are stacked against me.

 Stiff Person Syndrome is a VERY RARE disease.  Approximately one person per million is diagnosed, and it's not very widely understood.  Not many studies can be done, because there aren't enough of us to go around!

The good, the bad and the ugly;

•  The only "GOOD" I have found so far, is that I was already on IVIG for the CIDP. 
• Sudden Stimuli, (Loud noises, lights, doors slamming, honking) cause horrible spasms throughout my entire body. (IVIG helps lessen this)
• Muscle spasms aren't your typical spasms.  My entire body is involved.  Imagine doing a sit-up and staying in the "up" position.
• I have to take Valium or Baclofen daily, just to uncurl out of bed in the morning.
• I have to try to explain to a 2 year old that screaming actually HURTS Mommy.  Not easy.
• I can attempt to get the disease into a "plateau" phase, but have to get up to 80 mg a day of Bacolfen first.
• I am now stuck on IVIG for the rest of my life.  No remission. No cure. No pain relief.
• I will eventually have spasms so bad that the muscles will rupture, and need a surgical repair.
• The spasms will eventually try to break my bones, including my ribcage and spine.
• My life expectancy is now 15 years from date of diagnosis.

Now, that last one- There isn't a ton of "Google" research that explains it.  The studies that have been done by universities are grim.  The description of some of these poor people make me cry when I read them, because only 25% ever finished the 10 year study.  Half of the people died accidentally, because they stopped taking the medication.  That's a big NO-NO.  Once I am up to the amount needed, I can NEVER EVER stop taking it, or my body will shut down systematically, VERY quickly.

Luckily, I am the stubborn Bitch that I am.  (Yes, with a capital "B")  I will never stop fighting, even though I have gotten so sad that I considered it.

The way I see it, if I am one in a million, I am already an "odds breaker".  Why?

• I am a 31 year old female, who has ALWAYS done what I was told I COULDN'T.
• I worked in Construction my entire adult life, because someone told me I couldn't.
• I became a singer, even though I thought I couldn't.
• I was able to get back up and walk after being completely paralyzed.
• I had 2 daughters, even though multiple doctors told me I couldn't.
• I married the man of my dreams, even though LOTS of people told me I couldn't.
• I have managed to stay HAPPILY married to said man after being told I couldn't.
• I became a good mother, even thought I thought I couldn't.   

And there are SO MANY MORE!

I don't believe that I will only live 5-15 years.  I REFUSE to believe it. I am Penni Lynne.  If you know me, that's enough of a reason.  I have always been a tough bitch, and I will not let anything kill me.  I still have something left for this world.  I just don't know what it is yet.

My BUCKET LIST is still being written.  I have actually already crossed off a few things!

• I sang on stage...(Thanks to Doug, now I actually have my own fans!) (Oh, and I ROCK THE SHIT out of "Bobby McGee")
• I went skydiving...(Thanks to my friend Bill)

I still need to do things though, and now I will work on them a little faster.

• I WILL have full sleeves of tattoos.  (Sorry to my parents, but dammit, I love them.)
• I WILL record an entire album of my own songs.
• I WILL go back to school to become a nurse, or Patient Advocate.
• I WILL watch both of my daughters grow up and graduate High School.
• I WILL eliminate all of the negative shit heads in my life.  (even the ones related to me)
• I WILL help people every day.  
• I WILL teach people to help themselves.
• I WILL buy a house one day.  (Just have to figure out how to get a mortgage on SSI!)
• 
  
• I WILL have a 50th Wedding anniversary. (You just watch me....)

The list goes on.  I add to it every day, and Doug and I both are going to go to school together.

Now, to the 5 stages of Grief that I started this post with.

1.) Denial and Isolation;

 Yup, I already did that.  I was diagnosed a month ago, and I still want to deny that I am as sick as they say, but when I end up on the bathroom floor, clutching for a bottle of muscle relaxers, it it a pretty good reminder that I am sick.

One thing I am VERY guilty of; Hiding my symptoms.  Even from my husband.  Especially my kids.  Luckily, my husband is sweet enough to let me think I'm getting away with it...But I compare it to when people have the flu, and have to vomit, they don't want anyone to see them like that!  So, when I feel a spasm come on, I "have to take a shower", or "go to the bathroom",  or just plain old, "Mommy will be back in a minute". 

Right now, my kids are too young to understand the severity of the situation, and I just want them to be kids. My oldest has already seen me in a wheelchair, and it has made her a better person. She treats people with disabilities with respect and courtesy.  Other kids at school make fun of the "Special Needs" kids, and Patience has befriended them all.  She even went as far as to borrow my duct tape to bring to school one day, and made a drink holder for a little girls walker.

I don't let them see the bad stuff though.  I used to have home infusions, and it scared the hell out of her watching a lady shove needles into my arms, so I have them at the hospital, and will continue to do so, until it becomes a pain to get out of the house.

2.) Anger;

Now, this one comes and goes.  It can be pretty destructive as well. I get angry for lots of reasons;

• Why me?  Is this Karma?  
• No one understands my pain, my struggle.
• I can't open the peanut butter jar.
• I'm only 31.
• I can't sing today because of all of the medication I have on board.
• My husband doesn't deserve this.
• I don't want to die young.

and the list goes on...

I am SO LUCKY to have married the wonderful person that is my husband.  He is the POLAR opposite of me, and is an Optimist.  He keeps me grounded, and I am a better person because of him. Honestly, a LOT of people of better people because of him.  When you are around him, you CAN'T be angry.  He makes you want to be more like him.

I hate to admit this, but the reason I keep this blog is to educate, and help other people with my disease...I have HORRIBLE fits of rage.  Sometimes it's the medication ups and downs, and sometimes it's hormonal, and sometimes, I just need to be angry!

I want someone to blame, someone to take it out on, and just want to go back to being the person I was before all of this started.

I used to be a bad bitch.  I could carry 8-10 sticks of pressure treated lumber on one shoulder.  I could paint a room in a day, I could organize multiple crews of employees and always stay on track and under budget on jobs.  I was awesome at sales, and up-selling a job.  I was an incredibly talented painter, and I could make a wall look like glass.  I could build decks, install doors, and lay tile flooring like a beast.

I can't go back to that, ever again.  I can barely hold a pencil now.

3.) Bargaining;

I do this a lot.  If I had just gotten to the doctor sooner, If I had just worn a better respirator while sanding drywall, maybe if I went to church more, if, if, if...

Maybe if I do this, it will go away...I want to change the past, but I can't.

4.) Depression;

This is one of the stages that comes and goes.  I'm not depressed today, but I may be tomorrow.  And when it takes hold, it's hard to shake.  Sometimes it goes hand in hand with anger.  Usually, when I get depressed, I get angry that I am depressed.  Then, when I get angry, I sit and sulk, sometimes for days, which is horrible.  My husband tries everything he can think of, and sometimes it works, sometimes it doesn't.

Sometimes, when it circles back to anger, it can be productive!  I get so angry that I start trying to prove that I CAN do stuff, and my house will get cleaned, or the laundry will get done, or something to that nature!

I am actively searching for a Therapist right now, for both my husband and I, so he can understand better what happens in someone who is chronically ill.  It's hard for him, because he has never had anxiety, or phobias, or any kind of severe depression, so without personal knowledge, you can't explain it.

5.) Acceptance;

I think I am finally here, hence the blog post.  I have accepted the possibility of a pretty rough ride, and am preparing for it the best I can.

I am drafting a will, and my wishes for my kids, and keeping a journal for them, so they know how loved they are.

I am staying on top of my doctors appointments, and not avoiding them anymore, and taking my meds exactly as I should, and not fighting the fact that I have to take them.

I am stocking up on the things I will need when I am unable to walk, so I don't have to fight for them when the time comes.

I will work on my bucket list, get tattoos, not take any shit from bad medical staff or nurses, and live life.

I will not lose this battle without a fight.