Good days, Bad days and everything in between...Living with SPS

It's 3:17am as I start to write this blog post.

I made coffee, took my meds, and didn't tear up as I got out of my chair this morning.  My recliner has become my new "bed".  I miss sleeping next to my husband every night, but it's just not possible anymore.

My husband suggested we get "his and hers" recliners so we can both stay out in the Living Room together.  We've done it before, but the last time we camped out together, he had just gone thru and emergency back surgery due to a ruptured disc, and I was 9 months pregnant with our youngest, Mello.

Back then, it was a full sized futon that we squeezed on to with a needy German Shepherd.

After Mello was born, we moved a pack and play with a bassinet insert right next to the futon, and the Living area became a bedroom. There, I could take care of the middle of the night feedings, and keep my husbands medicine schedule covered.  Our house was less than 700 Square feet!  (I actually miss that.  I could vacuum the whole house from one outlet!!!)

That was 2 1/2 years ago.  Unreal.

Since then, we have lived in 3 different places, survived homelessness, and realized that FAMILY is a bond that isn't always made with bloodlines.  So, I'm no longer a believer in "Blood is thicker than Water"...Sorry!

People have asked about Stiff Person Syndrome almost every day since I was diagnosed.  I research EVERY DAY, and I can't find ONE single "foundation" or "association" to direct them to.  Just Google!

So, what I will tell you is what I deal with personally.  If you don't want to know, don't read this.  This is a very REAL account of parts of typical days, weeks and months for me, and tons of people with chronic illness.

I usually don't sugar coat much, but you will see some parts of this "lightened" a bit, in case a younger person reads this.

LIVING WITH STIFF PERSON SYNDROME

Like anything else, even though I was just diagnosed, I have had this disease for much longer than the month or so that I have carried the title.

When you have symptom after symptom, and already have a  chronic illness, you think of any new "symptom" as just another side effect of what you already have, or medication induced problems, or even stress.

That's exactly what I've done.

I have had a Pain Specialist for my diagnosis of Occipital Neuralgia for over a year now.  About 6 months ago, I explained to my doctor that I have had problems with muscle spasms for years, but that they were gradually getting worse.  Even the doctor thought my back spasms were related to everything else as well.

So, as I grew more uncomfortable, the spasm in my back actually started to bulge.  It looked like someone had taken a paper towel roll and slid it under my skin, parallel to my spine on the right side.  As it got worse, I wasn't able to stand up straight.  I stayed hunched over like a 90 year old woman, and limped around.

It was awful.  I ended up having to ASK for an MRI, because the pain had become unbearable, and I was having trouble getting around my own house.  I couldn't pick up the kids, put dishes away in cabinets above my head...I was frustrated.  I was convinced I had herniated a disc, or pinched a nerve.

I have become somewhat of an "expert" on herniated discs, because my husband had one for years.  After 2 years of conservative treatment, ie; PT, epidural injections, steroids, he RUPTURED his disc. 

How?  Well, we were in an elevator, it went down, and right before the doors opened, it dropped about 3 inches.  My husband went into shock the pain was so bad, and he was in Emergency Surgery 2 days later for a Micro-Discectomy. 

The MRI (L and T spine) came back with just evidence of severe spasms, and 2 herniated discs. (This was ODD to me, because I had no "trauma" in order to herniate discs. 

My C-Spine MRI (my neck) was the most telling.  The doctor said he had "never seen a neck so straight".  Apparently thats a BAD thing.  The spasms went from my neck to my hips, and hurt like hell!

So, I was put on a regular regimen of muscle relaxers, and went in for a few epidural procedures to relieve some of the rigidity.  That helped a little.  I was at least able to stand up straighter!

(need to finish this later....meds are kicking in...)




                                                                                                             

Headache HELL: Part 2 - The people who are supposed to help, that DON'T!

Before I start, I should explain something.

If you are sick, you trust your doctor and their office to make the right decisions for you.  To call in the right medication to the pharmacy, to know what medications you are on, what will interact with your medications, things like that.

Odds are, since a normal person only goes to a doctor once or twice a year, they can't screw much up.

Things are different for people like me.

I see a Pain Specialist 3 times a month.
I am in the Infusion Center every week, for 2 days in a row, 6-8 hours a day.
I have 2-3 days to recover from my infusions, due to the fact that I'm allergic to them. (Aseptic Meningitis)
I have to see my Neurologist 2 times a month.
Then, add in procedures for my back and neck, visits to my Regular Doctor, and time spent in the Pharmacy, and guess what?

It feels like I have a full time JOB.

The point I am attempting to make is, I think I had more "down time" when I ran a small business!  Being chronically ill is exhausting.

So, that point made, imagine spending your entire day in pain, just leaving the doctor's/pharmacy/hospital, picking up your kids from school, and when you check the mail, you get a notice that the ONLY pain medication that actually works has been denied by your insurance company.

No biggie, right?   I should just be able to call the doctor's office, tell them what happened, and they will send over some magical paper that explains that I NEED this certain medication, and poof, everything will be fine in a week or so.

In a perfect world, that would be the case.

Here's how the process of getting an "expensive" medicine approved is supposed to go:

1. Take the medication to the pharmacy, and they tell you that your insurance company has denied it.
2. The pharmacy is SUPPOSED to fax a letter to your doctor's office, informing them of the denial, and they can either give you your prescription back, or keep it until the medication is approved.
3. The doctor's office SHOULD replace your prescription with something that IS covered, and then start the "Prior Authorization" (PA) process for the medication you were originally prescribed.. 
4. Within 5-7 days, you get a call from the pharmacy letting you know that your prescription is ready.

That's the "poof" I was talking about.  Seems easy, right?

The problem I have been having is, depending on people to do their job.

Okay, let me get back to the headache, and try to explain how all of this comes into play.

Where was I?

Ah, the RHIZOTOMY.

After 2 cervical facet injections, one of which nearly scared me away from the pain specialist altogether, I was ready to fix this headache.

It had been an entire year of pain.  Unreal.

There is no long descriptive story about the Rhizotomy.  I was heavily sedated, and don't remember anything until I came out of the room.

I was told that I would know the SECOND that I was done whether or not it worked.  

I thought I knew what to expect, but yet again, as seems to be the case when I get my hopes up, I was wrong.  Again.

When I came out of the room after the Rhizotomy, I could still feel my headache pain.  I was worried sick, because I actually had a new pain.

The right side of my head was now ON FIRE.  A horrible burning sensation had stemmed from the procedure.

I panicked.  Not a little bit, either.

I started to cry, uncontrollably, in the recovery chair.  This drew the attention of the anesthesiologist, who came to check on me.  When I explained that I was still in pain, and thought that I was supposed to feel better immediately, he looked confused.  He sent the Medical Assistant over to see me.

I got the "You have to give it time..."  and when I asked how MUCH time???  The answer I got sent me into a downward spiral.  "4-6 weeks."

My poor husband.  I was discharged a weeping mess.  AGAIN.

This time, he didn't wait for me to calm down to ask me what was wrong.  He could tell I was still in pain, and got my verification.  See, he was under the same impression I was.  That once the procedure was done, I would absolutely KNOW that it worked.

So, he did what any loving husband would do.  He wanted someones head on a platter.

He asked for the doctor, or anyone that could tell him what went wrong.  He wanted an explanation, anything that would explain my pain.  He got me comfortable in the car, turned on the AC, and paced back and forth while the office staff got more and more uncomfortable.  When they realized he wasn't leaving until SOMEONE talked to him, they sent out the Medical Assistant.

The MA explained that in "most cases" the nerves react immediately, and a patient can tell that the procedure worked.  In other cases, it can take 4-6 weeks to work.  She folded and rung her hands, as I crawled out of the parked car.  I had heard what she said, and wasn't happy.

I apologized for being so upset, and told her that I had looked forward to this day for so long, because I thought I would be out of pain.  That was all I wanted.  I had gotten my hopes up, and really shouldn't have.

My husband went into the office, made another follow up, and we left.

An entire year had gone by, with no pain relief.

So, I don't mind saying this now, since I survived it, but I got depressed.  Pretty badly.

My husband packed me in the car, and we disappeared to Assateague Island for a day.

Alright, earlier I mentioned the medicine.  Here's the HELL part I'm talking about.

At any doctor's office, there is a staff member, (presumably more than one) that is in charge of PA's (Prior Authorizations), referrals to other doctors, and getting procedures approved by your insurance company.

At my neurologist's office, I have no issue with this.  The get me where I need to be, when I need to get there.

My problems started back in July.  Since I have to be on pain medication 24 hours a day, I have a Pain Specialist for  reason.  This is what they do for a living.  I was hoping for procedures to lessen or eliminate my pain, with the goal to come off of every pain medication I am on, so my body didn't develop a physical dependence. 

Since the procedures didn't work, I asked to go on "Long Acting" pain meds instead of short acting  (ie. Percocet, Norco, Morphine, etc.)  I hate having Percocet (oxycodone) laying around my house with kids around!

So, I was written a scrip for long actings, and a small scrip of short actings for breakthrough pain. I picked it up at the pharmacy with no issue.

Since it has to be titrated upwards, every month the prescription has to be upped, until a good level of pain relief is achieved.

Well, the next month, my prescription was denied.  With the cost being over $900 for the month, I couldn't afford to just pay cash for it, so they faxed a denial letter over to the Doc, who is supposed to send a PA over to the Insurance company, and within a week, I should have my scrip.

This DID NOT happen.  The pharmacy did their job, but when I called the doctors office, they explained to me that they had not sent over the Prior Authorization form yet.

Here's the timeline of how this went:

July 18- Received the prescription for LONG ACTING pain medicine.
(I was denied the same day, and contacted the Pain Doc's Office)

July 21-Called the PS (pain specialist) to confirm that they had sent over the PA form.
(I had to leave a message, because NO ONE gets to talk to the girl in charge)

August 10th- Received a denial letter in the mail from my insurance company, explaining that I could "APPEAL" the decision.  I opted for and "EXPEDITED APPEAL" which would give me an answer in 72 hours....IF, and only IF the doctor's office got the right paperwork faxed over to my "APPEALS COORDINATOR" 

August 18th- Made a call to the Appeals Coordinator, and she had received NOTHING from my doctor's office.  Nothing. 

***At this point, it had been a month since I was written the prescription.  I was in horrible pain, and taking MUCH less medication than I should have for 2 reasons.  1) I hate pain medication. 2) I had to spread 2 weeks of medication out over a MONTH.

So, pause on the timeline for a minute.  I am doing all of this fighting with the insurance company, and don't have any information as the MIDDLE MAN in the transaction. 

So, at my next appointment, I involve the doctor.  I show him my notes...( I am an AVID note taker) Names, dates, phone calls, etc. 

I explain that I don't have the fight in me when I am in THIS MUCH PAIN to do all this work.  It's bordering ridiculous. 

So, I thought to myself, "How do I get OFF of the pain meds altogether, so I don't have to do this anymore?"

FIX THE UNDERLYING PROBLEM!

So, my husband and I discuss other options for this headache.

How do we just MAKE THE PAIN GO AWAY?  That's all I want.  No pills, no doctors, just get rid of the headache. 

It's horrible!  I spend my days sensitive to light, I can't brush my hair, and by now, I'm avoiding taking a shower to wash my hair.  I used to LOVE my hair.  It has now reached my waist, and is a dreaded up mess, because I can't take care of it at all. 

I don't even remember now what month it was, but in the middle of all of this, I lost sight in my right eye.

Yup, JUST WENT BLIND.  Scared to death, I was sent to the infusion center immediately, to dose me full of steroids, in hopes that it was just inflammation. 

Okay back to the timeline:

Now Blind in my right eye, dealing with a full blown migraine 24 hours a day, unable to sleep in my bed, and I can't even have the window down in the car, because the wind MOVES my hair and puts me in excruciating pain....

August 20th: We decide to find a surgeon that will cut the nerve. 

*Of course, the one Doctor that does this, DOESN'T TAKE MY INSURANCE*

So, we look farther, and decide to get me into Johns Hopkin's Neurosurgery department, and pray they can do it.  I live 20 minutes from Hopkin's, so this should be EASY, right????

NOPE.  The same "Prior Authorization" girl in the office is in charge of this department as well.

Okay, so, I will skip over the bad parts.  I will fill them in later, but I am getting ANGRY just thinking about it. It's been 4 months.

Time on Deck: November 15th, 9:18am.  - I still don't have an appointment with Hopkin's. 

FOR MY HEADACHE, ALL I NEED IS *ONE* SURGEON TO CUT A NERVE.

I know it's a little more involved than that, but dammit, with 2 other diseases, my life would be SO much better if I could just get one guy to cut a hole near my spinal cord, and destroy this nasty little nerve that is making my life hell. 

So, I will call every day, until I have an appointment.

Oh, and I've decided to "name" the Occipital Nerve that has gone haywire, after the girl that hasn't done her job.  Yup.  I'm that pissed off.  I won't let you know her name just yet, but if I find out that she could have done this MUCH sooner, I will call them all out on the carpet.






 

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.

The HEADACHE, Part One. The HELL that led to a diagnosis.

*NOTE*- I started this Post MONTHS AGO, before my first post, so there is some repeated information, but, this was the beginning of my Occipital Neuralgia diagnosis and treatment.

*I wanted to post this, before PART 2, because of the paperwork HELL that has followed, and needs to be documented.  Sometimes, red tape can be so much worse than being chronically ill, and can actually lead to depression, and I honestly think some of these people need to be held accountable for delaying care of patients, due to their laziness or incompetence.

Laryngeal nerve damage; sounds scary, right?

It's just a possibility, but, I couldn't speak for over a month after an injection thru THE FRONT of my neck, in order to relieve my head pain.

In the Grand Scheme of all I've been through in the last 6 years it actually only ranks about a 2.

But, in my pre-paralysis life, trying to get out more, seeing people, and SINGING, it ranks about an 11.

Let me explain.

I'm not a doctor, just a patient. Sometimes I call myself a "Professional Patient", due to the fact that I have had SO many doctors, nurses, and surgical procedures, because I can tend to feel more qualified than the people practicing.

They do call it "Medical PRACTICE" for a reason. And just a note, in the medical field, "practice" doesn't always make "perfect"!

I have a chronic "condition". A rare, neurological, auto-immune disease, called CIDP. Not usually fatal, but can be in the wrong circumstances, and if you don't have the right team of doctors, the mis-diagnosis of every symptom you have can be hell!

I wont back-track into the last six years, I have a different blog for that.

Long story short, I was paralyzed on my right hand side, pregnancy exacerbated the condition, and IVIG treatments, and a GREAT neurologist saved my life. I am walking again, but dealing with side effects of treatments and medications.

I'm writing this in hopes a doctor reads it. Or maybe medical students, before they sell-out. (You will. Keep saying you won't, but you will.)

Where do I start? AHHH, the Headache.

June 2011;

I started to get a pain in the back of my neck. It ran up the side of my head in a perfect line, like someone poured lighter fluid on the right side above my ear, and set it blaze. Some days it wasn't too bad, and other days, it felt like someone was trying to pull an axe OUT of my head. (Imagine someone standing over you, foot on your neck, yanking an axe out of the side of your head...)

So, I did what I always do when something scares me... I ignored it.

You may shake your head at this...but when you've seen as many doctors as I have, you'd understand I wasn't in ANY hurry to go see another one.

It took me 9 days to admit I needed to see someone. The first 3 weren't too bad, the next 3 it got worse, and my husband started to notice my discomfort, and by day 7, I was yelling at the kids for just giggling too loud.

So, I went to see my regular neurologist. An MRI was ordered, as usual. I've actually lost count of how many I've had at this point. Normal. Well, normal for me. So, blood was ordered, and pain meds were prescribed.

So, when you have a demyelinating disease, things tend to get thrown in the same category.  "It's probably just a side effect of...(insert medical term here.)"

Maybe just a migraine.  (Which can be horrible)

Maybe its just swelling in your brain. (Aseptic Meningitis- To "non-chronic" patients, this is scary. It's in the normal category for me.)

So, after a lot of "maybe it's..." and blood work, MRI's and referrals, nerve pain medicine, pain medicine, anti-depression medicine, anti-inflammatory medicine, muscle relaxers, homeopathic remedies, I even PRAYED.....yes, I tried EVERYTHING.

Nothing worked.

So, as the headache made it's place known in my life, my brain and body started to cope as best they could.

If you've EVER been in pain for a long period of time, you know what I'm talking about.

But, for those who don't understand chronic pain, here's the long and short of it;

You learn how to deal. Here are the phases you go through.

FIRST, you panic, because pain that bad would send a normal person to the Emergency Department.
You think of the worst case scenario, brain tumor, stroke, aneurysm, things like that.

NEXT, after all of your tests come back normal, you question your sanity. (and everyone else's!)

THEN, you get angry.  REALLY angry.  You're in pain, and NO ONE KNOWS WHY?

FINALLY, depression sets in.  You become complacent, and forfeit to the pain.  Stupid things start running through your head, like "maybe karma has finally caught up with me." and "maybe it's psychological", or "they will never figure this out, and I will have to stay like this forever"

The worst part; NO ONE CAN SEE YOUR INJURY.  Although debilitating, paralyzing, and FAR worse than a broken bone, because it's not visible, NO ONE KNOWS, unless you tell them.

Right, because that's what you want to do, right?  Walk around trying to "explain" your unexplained pain!

Here's the important part.  You can stay depressed, like many people do.  You can stay on your pain meds, and let the disease, pain and side effects take over, and become a shell of a person you used to be.  Walk around in auto-pilot, and forget all that's important.  

Honestly; I think that's okay for a while.  It's normal.  But, you can't stay there forever.

I am a lucky enough person to have a damn-near perfect life, with true happiness, behind my disease.  My husband is wonderful, and I have 2 beautiful daughters that I have to live for.

My husband goes to EVERY doctors appointment with me, and we try not to let our kids be affected by the ups and downs of all we've been through.  So, I am not alone.

So, what I suggest you do; the same thing I did.

Fight.  Fight like hell.

My neuro, who I adore and respect, did what he could for a while.  He was hoping that is was some sort of horrible chronic migraine that would remedy with at least ONE of the meds we tried.

Trigger points would actually help get rid of the pain in about 1/4 of the scalp area, for 4 hours at a time, but I couldn't keep having him inject lidocaine into my scalp and neck every 4 hours, but I thought about it!

So, after a couple of months, he sent me to a Pain Specialist, so we could get a better diagnosis, and try to start non-medicine based treatments.  I hate pills.  I just want the pain to go away.

The new Pain Doc was pretty cool when I first met him.  With my permission, he TEXED my Neurologist while I was in the exam room, to get my diagnosis codes to understand my condition better.  It's hard to explain to every new doctor that, "Yes, I have an auto-immune disease", but, "No this is it's own thing"....blah blah blah.  He got the back story, and told me we could try a procedure similar to the Epidural injections I was used to, but in my neck.  He talked WAY too fast, even for me, but I liked him for the massive amounts of information he was giving me. 

He had a P.A. with him, who seemed to do all the "leg work", so after the initial visit, I left with yet another handful of orders for tests, and made my follow up with the P.A, instead of the main doctor.  It ended up being one of the best decisions I have made.

Okay, back to the beginning of this post; We spent months going back and forth with medications, to the point of me getting so frustrated that I detoxed myself from my pain meds, just so I could describe the pain better to the P.A.  He called me crazy, told me to take my pain meds, and I scheduled my first procedure for my headache, which is reached through my neck.  A cervical nerve block, from C-2 to C-5 is where the Occipital Nerve branches out, so this test was to serve as a diagnostic tool, as well as (hopefully) pain relief.

I waited a couple of weeks, and scheduled my procedure with the original Doctor that I had seen at the practice, and was told I had to be sedated during the procedure to reduce the chance of any movement.  I had NO problem being sedated during  procedure where they were going to stick long needles in my NECK, so I signed away!

My first procedure went pretty well.  I was face down on a procedure table that looked like a massage table, so, all I could see were the techs feet, and hear the overly ambitious female anesthesiologist trying to sound all tough and business-like in her male dominated profession.  (As a female who has spent my ENTIRE life surrounded by male dominated trades, and then choosing a career in one, I could relate.)  She spent a little too much time trying to use big words and look tough.  You can always spot the insecure ones by their over-assertion of power.

Anyway, I couldn't feel a thing after the local was inserted, and I could actually FEEL the feeling go away.  Does that even make sense?  I felt the pain from the back of my neck dissipate, all the way up the line of pain on the right side of my head. 

I was ecstatic.

I cried, hugged the doctor, and walked out to my husband with a huge smile on my face.  I think I talked about a hundred miles an hour on the way home.  Stuff I was going to do, I was going to dye my hair again, Look honey!  I can touch my head!  I even ran my fingers through my hair.  I was SO HAPPY!  I was tender in the injection site, but I didn't care!  My HEADACHE was GONE!

4 hours later; I cried again.  Very slowly, the local pain medicine, that accompanies the medicine in the shot, wore off.

And, just as it wore off, the headache came back.

I cried all night.  I hid in my bedroom, and my poor husband went and go the kids, and had to keep them away from me.  I felt horrible for him.  He looked happier than me when my headache went away, because he's watched his wife in pain for so long.

The next day, I made an Emergency Doctor's appointment.  I had to see the P.A., because the main doc's schedule was full.  No biggie.  I didn't care.  I just wanted a damn explanation.

I was a mess.  No makeup, I still had the same clothes on from the day before, and still had the yellow-orange tint to my skin from where the iodine was applied during the procedure.  Did I care?  Not one bit. My husband was with me, thankfully, because I was so emotionally unstable that I wasn't able to complete sentences.

When the P.A. walked in, I could actually see sympathy in his eyes.  You don't see much of that in Doctor's offices anymore.  They've usually either sold out, or become numb to people in pain.  No this one.  He asked me how I was doing.  I teared up as I explained, and my husband had to cut in, more than once, to get my point across for me.  The P.A. listened.  Intently.  When we were done, he apologized for the pain I was in, and I actually giggled a little.  It was like he was taking credit for the pain.  He felt obligated to get rid of it.

So, what he explained was; The injection is full of anti-inflammatory medication (Cortico-Steroids), and they take awhile to work.  The local pain medication got rid of my headache because it hit the base of the Occipital Nerve root, and did it's job.  So, the injection wasn't a waste...it was DIAGNOSTIC.  If it hadn't worked, even partially, then they would have known I had the wrong diagnosis.  Because it DID work, even just for a couple of hours, they were able to successfully diagnose me with Occipital Neuralgia. 

Now they could develop a system to get rid of the headache for me, because at least they knew exactly what we were dealing with, and I had an official diagnosis.

So, with this diagnosis, he told me my options.  I could wait it out, and see if within a week or two I had any relief, or I could work towards a Rhizotomy. In the mean time, I would be put on an oral medication regimen that would reduce my pain dramatically.***(More on the meds in Part 2)***

I chose both.  To work towards the Rhizotomy, I had to have a few more Cervical Facet Blocks that didn't work.  Sad, isn't it?  I had to go through procedures that I knew wouldn't do anything, in order to have a larger procedure that would HOPEFULLY help.  But, my insurance company dictated this, so I had to play by their rules.

I made the appointment for my next procedure for about 2 weeks later, but my regular Doc was on Vacation during that time frame.  Since we knew it probably wouldn't work anyway, I went ahead and scheduled the procedure with a brand new female Doctor that had just started with the practice.  She was "new" (to this office) so, her schedule was more open. 

We discussed that, if I improved at all, I would cancel the procedure, and make a follow-up  appointment to let them know.  That didn't happen.

The day of my procedure, I "Googled" the female doctor that would be performing the procedure.  On the Pain Specialists' website, it listed award after award, article after article, and I was highly impressed.  If you know me, you understand why.  If you don't know me; I have a soft spot for any female in a male-dominated profession, especially if they have dominated in their field.  There are 2 types of females that do this.  The "insecure, I need to do this to prove to other people I can do this" and then there is the "I need to prove to myself I can do this, because I have been made to think I couldn't".  (If you remember the anesthesiologist from earlier in my story, she was the first one.) I'd like to think that I, myself am in the second category.

Okay, so, now we've almost rounded back to the beginning of this post...I'm getting there, I swear!

My procedure was scheduled for the afternoon, which meant I wouldn't be able to eat or drink anything due to the sedation I was going to receive.  Well, the sedation I was supposed to receive.

Here goes; I got a call at around 1:30pm from the front desk girl at the procedure side of the Doctor's office.  Apparently, the Anesthesiologist didn't show up that day.  I was a little irritated about this.  He just didn't post for work?  Really?  I couldn't believe she actually told me this!  So, I was given the option to re-schedule, or proceed with the procedure.  (Sounds funny; proceed with a procedure? Sorry, it's early.)

My thinking; Since I had this procedure before, and we knew it wasn't going to work anyway, why not?

So, I let her know we'd be there, and then I chose to eat on my way, because I had been starving myself for the anesthesia part of it.  I don't do so well without food.  I was irritable and emotional on so many levels, because of the low blood sugar, the anxiety from pre-procedure jitters, and sad that I knew what was about to happen.  I was going to have 4 hours of relief, and then my headache would come back.  I took 2 Valium to calm myself.  Jesus, was I a mess, and my poor husband had been a punching bag all morning because of my instability!  (I think he was looking forward to me being sedated, and sleeping for the rest of the day, and I don't blame him one bit.)

Upon my arrival, I handed in my procedure paperwork, felt the Valium kick in, and handed my husband the Kindle (one of his versions of Valium), so he could combat the boredom that comes with the joys of being a caretaker.  

We waited for nearly an hour, which is ridiculous, because they had actually canceled patients, due to the Anesthesiologist being "Out".  I was brought back to the "Pre-Procedure Room", where they took my vitals, explained that I needed to stay VERY still during the procedure, because they were inserting a needle into my NECK, and if I jerked or moved, I could cause issues.  I signed my legal rights away, and prepped myself mentally for the procedure.  The mood in the room was somewhat frantic.  You could tell they were behind schedule, and I could hear the nurses and techs chatter about the female doc's bedside manner, and pushiness towards them.  I learned by "over-listening" to their conversations, that because this Doctor was new, they had to learn HER way of doing things; where she wanted them to stand during a procedure, what kind of drape, how many needles to prep, where she wanted the fluoroscope, etc. They were used to the other doctors' procedures, but apparently this ones' attention to detail was annoying the hell out of them.  The was particular about everything.  (You learn a LOT from overhearing conversations in these situations) I thought to myself; that I didn't really care what her bedside manner was like, as long as this didn't hurt.

I thought wrong.

When it was my turn to be brought into the room, she instructed the nurse to have me turn my gown around, so the opening was in the front.  I found two things wrong with this; 1) She was standing 4 feet away from me, and instructed someone else to instruct me, and 2) why in the hell would I need the gown open in the front, if she was placing one needle in the back of my neck???

All 3 of us, the tech, the nurse, and I looked at each other, puzzled.

My questions were answered 30 seconds later, when she did the "instructed" thing again.  This time, she was only 2 feet away from me, barking orders about the placement of EVERYTHING in the room to the tech.  She instructed the nurse to explain that she was going to go through the front of my neck in order to reach the facet joints in my C-spine where the medicine needed to be placed.  Even though I could hear her just fine, she gave the nurse a look, and the nurse had to repeat everything the doctor had just said.  The instructing thing was infuriating to me.  And now, on top of that, I was scared out of my mind.

Recap from my perspective; I'm doing a pointless procedure so I can qualify for another procedure.  I have already been through one of these procedures, so I think I know what to expect.  I made the decision to go through with the procedure un-sedated because, again, I thought I knew what to expect.  Now, within seconds of walking into the room, I'm scared, frustrated, and the only people in there that can help me, look just as scared and confused as I did.

So, my natural instinct kicked in, and I started to cry.  Quietly, tears rolled down my face, and I laid on my back on the table, in a huge hurry to get this over with.  The tech finished her set up, and came and held my hand.  I think she was squeezing as hard as I was, and I could tell that she felt incredibly sorry for me at this point.  The doctor barked orders to me about positioning myself, and I cried harder.  Not a sound came out of me, just tears.  Lots of them.  She growled at me to stay still, and did the infamous "instructed" thing the whole time.  Everything she said, was echoed to me by the nurse, like there was some sort of two-way mirror between the doctor and I.

Okay, watching a needle come at your neck is awful.  I'm pretty tough, but I am not ashamed to admit how terrified I was.  Even with Valium on board, I was afraid and rattled. 

But, watching 3 needles come at your neck is worse.

Tears, now steadily streaming down my face, were being wiped away by a nurse that looked like she wanted to cry with me.  I somehow squeezed out the words "I didn't know we were going to use 3 needles?"  I was answered by the doctor, who, apparently now could see me laying there.  She explained that she did things differently, and since my last procedure didn't work, this was a better thing to try.  She went on about how one needle was for the local, and it was actually just a "lead" and the other 2 were for putting the medicine in more than one spot, and blah, blah, blah. Oh, now you can acknowledge that I exist? I explained that I could feel a TON of pressure in my neck and throat, and she told me it was normal. 

When she was finally finished, I was walked out of the room by the nurse, who sat me down in the post-op chair, and got me tissues.  She grabbed the post-op nurse and filled her in, and got me an ice pack for the 3 new puncture wounds I had in my neck.  When I went to ask a question about the pain I was in, my voice was gone.  I assumed it was temporary, but cried harder.

The pain in the front of my neck was horrible.  The muscle that holds my head up felt like it was on fire, and hurt like hell.  I took a couple pain pills, meditated while they took my blood pressure, so it was low enough to go home, and got the hell out of there.

I waited to fill my husband in on the way home about what had happened, because the poor thing was handed a floppy mess of a wife when they let me leave the procedure room.  He probably asked 6 times if I was alright, to which I just shook my head, no, and kept walking until we were out of the office. 

I never wanted to go back there again.  My neck hurt for WEEKS afterwards, and I couldn't talk.  I had this awful raspy laryngitis sound coming out of my mouth, every time I needed to say something, and it felt like I was one swallow away from my throat closing.

So, I made another follow up with my P.A. and explained everything to him.  He couldn't tell me why she went through the from of my neck.  He had never heard of it before, but since she was a world renowned Pain Doc, she must've had her reasons. I called my neurologist as well, and he had never heard of it before, either. I told him I would NEVER do that procedure again.

So, he scheduled the Rhizotomy for 2 weeks later.  I had been tortured enough.

Let me give you the time-line; my Rhizotomy was scheduled on the 1 year anniversary of the start of the headache. A whole year of hell.

And this is only Part One.

To be continued...

New Day, New Diagnosis.

Well, if you've read my last posts, you know I already have a diagnosis of CIDP. 

The partial laundry list of symptoms and side effects of just that disease include severe weakness, loss of reflexes, loss of grip in my right hand (I tend to drop things, a LOT), small and large nerve fiber damage,  Optic Neuritis, (I went completely blind in my right eye) neuropathy in my feet, legs right arm and right hand, a nasty twitch in the right side of my face and neck, Foot Drop, and partial paralysis in my right leg, arm and face, including my vocal chords.  It has progressed pretty rapidly since I first noticed the symptoms, so we started IVIG as soon as I actually admitted to myself I was no longer in remission.  My husband tried to tell me MONTHS prior that I was showing symptoms, but I hoped that if I ignored them, maybe they'd go away.  That didn't work out for me.

And for 18 very LONG months now, I have suffered from Occipital Neuralgia. 

I have had 3 separate cervical facet injections, as well as a Rhizotomy to attempt to minimize the pain, to no avail.  I can no longer wash, brush, cut, or dye my hair, nor can I even touch my scalp without high doses of pain medicine.  I have adopted ways to cope with this, but it's not fun. 

So, I had started this blog to document my journey through the treatment and recovery of both of these nasty diseases.  What I didn't realize was that I'd be adding to that list.

This week, I was diagnosed with "Stiff Person Syndrome".

It really doesn't sound that bad.  I think the name is fairly misleading.  It should be "Miserable Person Syndrome" or "Walks like a 90 year old Syndrome"

So, let me back up a bit.  I didn't think I had any new symptoms, and I wasn't prepared for this kind of news this week.

My neurologist had given me an order to get some labs done, which is fairly routine, due to the fact that IVIG can be pretty rough on my kidneys, and the sheer amount of meds I'm on can be hazardous to my liver and pancreas.  The blood tests were only ordered to make sure I was healthy enough (HA!) to continue IVIG infusions.

I joked as he wrote the order, and aked if he could run extra tests, to rule out cancer.  Because all I needed was to have to endure Chemo AND IVIG!  It's odd what you joke about when you're chronically ill.

So, the next day, Doug and I both went to Quest Diagnostics, because I was able to use the fact that he had to drive me to get my blood tests, I was able to force him to FINALLY get his blood drawn as well.  He had been putting off his blood work from his annual physical for 2 years.  As a wife, I was concerned about his cholesterol levels because of his eating habits.  I poke fun at him, (because he's 6'5"), and call him a Great Dane.  It's a known fact, the larger the person, the higher the susceptibility to heart failure, disease and coronary events.  So, I was happy we here both having blood drawn!

It took forever to check me in, even though I had an appointment, because of the sheer magnitude of tests requested on my lab order.  Doug was in and out, and because the poor thing had to fast the morning of, he left to get us both coffee while they figured out how many tubes they needed for me.  It ended up being 26.

A couple days later, Doug received a letter in the mail from his Doctor stating that he was in perfect health, and all of his blood work came back normal.  I can't tell you how happy this made me, but Doug, of course, said something along the lines of "See, honey, I'm PERFECT!"  

I, on the other hand got a phone call from the Neurologist's office.  My tests had come back abnormal, and I needed to get a full body scan as soon as possible, before my next follow-up appointment less than a week later, so he would have the results by then.  I naturally questioned the nurse about why I needed a full body scan, and was given a generic "He wants to rule things OUT, before he goes over the blood work with you."

Well, to say the least, I am not one to sit and wait for anything.  Especially if it has to do with my health.  So, I got a copy of my own blood results, and started Google-ing.  I made an appointment for the body scan the same day, and had to scarf down liquid contrast beforehand.  UGH.  When I called the Neurologist's office back to let them know I was done with the scan, I asked more about the tests.  I got an honest answer.

I had signs of massive inflammation, a super high white blood cell count, high platelet count and a positive Anti-GAD antibody result.  Without being Diabetic, that's not good.

If you have already clicked the link on "Stiff Person Syndrome" above, you already know what it entails.

But, I will sum it up.  In a nutshell, it is another neurological auto-immune disease that makes my muscles spasm uncontrollably.  Loud noises, anger, anxiety, even bright lights can set off a series of muscle contractions that I can't control. It can get to the point where my muscles can actually tear, or break bones in the process of spasm.  So, the nutshell part of it, IT SUCKS.  There are 3 stages.  Early, Late and End Stage.  Due to my symptoms, I am in the Late Stage.

I try.  I try as hard as I can to not let things bother me.  I'm on pretty high doses of anti-anxiety medication anyway, which seems to have helped.

You know what's awful about it?  I never thought to talk to the doctor about the pain in my muscles.  I thought I was just rapidly deteriorating from the CIDP, and if I stayed on the treatments, it would just get better. When it came to noise and other things making me tense up the way it did, I attributed that to stress!  I assumed my body was just responding to stress, and that maybe I was just a little crazy.  Because, REALLY, who wants to admit that when the kids are running around screaming, it actually made my entire body hurt?

So, here's the "Glass Half Full" part of it:
(Credit for any positives I find, go to my husband for teaching me how to find them.)

Positive #1: So many questions have been answered.

Positive #2:  I'm NOT crazy.  (Well, when it comes to THESE symptoms anyway!)

Let me explain;

We think I have had this disease for quite a while.  As in "We", I mean my husband and I.  But, the neurologist says that since I was already on IVIG, daily muscle relaxers such as Valium and Baclofen, it wasn't easily detectable.  Why, you ask?  Well, because the first line of treatment for SPS (Stiff Person Syndrome) is IVIG, combined with high doses of Valium and/or Baclofen.

I avoided SO MANY places because I thought I had some sort of psychological issue that made me tense up, and my entire body hurt.  I wouldn't go out to crowded bars, I steer clear of the "Play Places" in every single fast food chain, and sporting events?   Forget it. 

But again, I thought I had some crazy anti-social personality disorder that manifested itself in a physical way.

Now that I know what it is...I actually wish it were a psychological thing.  It would be easier to treat.  It certainly wouldn't be very easy to admit, (this is the first time I've even said it "out loud") But, yes, it would be a hell of a lot easier to deal with than SPS.  What an awful thing to say.  

I'D RATHER BE CRAZY.

There, I said it. 

That's just about all I can come up with on the positive side of this.


The negatives, well, there are too many to mention right now.  I think I'm still in denial, because it hasn't quite hit me yet. So, I will try not to call these negatives, I will call them FACTS.  Just plain old factual statements that piss me off. 

The facts: I now have a Grand Total of 3 Neurologically based Auto-Immune Diseases.

• The CIDP, with continued IVIG Infusion treatments can be shoved into remission, and once in remission, maintenance infusions are scheduled to keep you in remission.  CIDP remission can last from moths to years. 
• The Occipital Neuralgia, although  horrible, can be surgically helped, or even eliminated completely.  Since the Rhizotomy didn't work, I need a Neurosurgeon to cut the nerve, but it CAN be done by the right doctor.  *NOTE- I have been trying for months to get into John's Hopkin's to accomplish this goal, but we are having some paperwork issues* (Pet Peeve Post includes the details of this-Coming Soon)
• I now know the SPS is the reason behind my disc herniations that seemed to come out of nowhere.
• I now know that SPS is the reason my Pain Specialist said he had "never seen a Cervical MRI that was in such a straight line" before.  (Due to the muscle spasms in my neck, it doesn't curve like it should)
• I was looking forward to the end of my course of IVIG infusion treatments, but now that I have been diagnosed with SPS, I can not stop them.  If I do, the spasms will get worse much faster.
• There is no cure.  Just symptom and pain management.
• The muscle spasms can get so bad that my bones can fracture and even break, especially as I get older.
• My muscles can literally tear themselves apart.
• This disease only affects 1 person per 1 million.

Okay, so, those are the negative, shitty facts.  Here's my list of facts in response to all I have learned so far about this disease, and the ones I already have; My own personal goals and positives.

• I always knew I was One in a Million.
• I can POSSIBLY get the symptoms to "Plateau". (meaning they can stay the same for a long while)
• I WILL dedicate myself to my treatments, and stop being so stubborn about taking medications I hate.
• I will NOT dwell on what COULD happen, I will focus on each days challenges.
• I will NOT let ANY Doctor, Nurse, or Medical staff slack off regarding my care ANYMORE.
• I will continue to be my own advocate when it comes to fighting for quality compassionate care from not only Doctors, but their office staff as well.
• I will not take NO for an answer when my Insurance Company denies YET ANOTHER medication, procedure, or treatment.
• I will educate myself on every aspect of all of my diseases, and  try every treatment available to improve my QUALITY of life.
• I will try my hardest, every day, not to let all of this bring me down.
• I will allow myself to take a break from being tough, and cry it out every once and a while, and stop pretending I am made of stone.
• I will ask for help when I need it. (After, of course, I'm stubborn first. :)
• Even on the days I want to hate the world, I will remember that my incredibly beautiful husband is in my corner, and try my hardest not to take out my self pity on him.
• I will teach my children, and the rest of the world that DISABLED does not mean BROKEN.
• I will still follow my dreams, be passionate about what I believe in, and show my daughters how to do the same.
• I will try to remember, even on my roughest days, that I have never let anything stand in my way before, and there is NO reason to let anything stand in my way now.   

• I will NEVER give up.

So, for those of you reading this, I can't thank you enough for just taking the time to connect, and listen to me vent.  I don't sugar coat anything, and have vowed to be brutally honest on this blog, throughout this journey.

Please know that this blog is for my own therapeutic reasons.  I also have severe memory deficits at this point in the illnesses, and it may be helpful one day to be able to come back here, and read about all I went through.  

I also aim to help other people in my situation, or similar situations, by letting them know they are not alone in this world.  

And like I said in an earlier post, I would love a Doctor or two to skim over it, and maybe, just maybe, it will prolong them from selling out too soon. 

I added links to a lot of the text, so if it's highlighted, it will open a new window with either a Wiki page or information page.

That's all for now.  I will probably write lots more about this new diagnosis as soon as it actually sinks in.  

I think I might have forgotten to mention that part; The news of the Stiff Person Syndrome hasn't hit me yet.

Not kidding.

So many Doctors, so little time. Just a visit to the dentist!

So, TODAY, I have 3 different Doctor's appointments.  Yes, 3 in one day.  Neurologist, followed by the Dentist, and finished up with a Pain Specialist appointment. 

This blog post is only about one of them. 

This is a typical week for me.  Most weeks I try to stick to 2, but I've let my self ignore "regular check-ups", and Primary Care Physicians, due to the fact that I already see so many doctors.  But, when you see so many specialists, a "regular check-up" is actually kind of exciting for me!  Hence, the reason for this post! 

Not making regular dental check-ups has become habit for me.

Now, I have to pay the price for that.  I have been ignoring my nagging wisdom teeth for well over 3 years.  When they first started to bother me, I went to a friend of the family, who was an oral surgeon, and WASN'T treated like a friend at all.  I was given a $3,500 estimate, and sent on my way.

I learned that "impacted" was much more expensive to remove, than if they just grew in.  So, I let them grow in.  Hindsight sure is 20/20.

Now, after years of neglect, they have grown in, and both have cracked, and broken.   I have actual pulp showing in one, and severe nerve pain in the other.  I'm a dental hygiene freak.  I brush 2 or 3 times a day, I floss regularly, and I own my own dental mirror and plaque remover.  Yup, I'm weird.  BUT, I still found an excuse to never go to the dentist.

I really don't like them.  Every time I have ever gone, it's always been a different one, because I haven't found one YET, that has made me comfortable in the chair.  They are all inconsistent too!  One will offer nitrous for just a simple cleaning, and others will rip your teeth out with just local anesthesia.  I don't get it.

So, my crazy reasoning behind avoiding the chair; my insurance covers normal check-ups, for preventative maintenance, and EMERGENCY extractions, or SIMPLE extractions.  I figured if they were above the gum line, that counted as a simple extraction.  

Well, it ended up being an Emergency extraction.  (well, 2 emergency extractions!)

I can very honestly say, I was impressed by the dentist.  His office staff on the other hand left a lot to be desired in the professionalism department, but hey, beggars can't be choosers, right?

*NOTE*- I may have taken a Valium or two (yes, I have a prescription) on the way there, so maybe that's why I wasn't so mad about the FaceBook "let me practice my duck-face" girls behind the desk.  I can't STAND incompetent medical assistants!

No exaggeration, I was called back the moment I got there, tools were laid out on the table, a short speech from the tech explaining what I should expect during and after the procedure, and signed a form with an "understanding" that my insurance did NOT cover any form of anesthesia, (other than local) WHATSOEVER.

The doctor walked in on cue, didn't say much, other than, "Open, Please." and numbed the back of my mouth.  Since they were wisdom teeth, naturally, it was the very back of my mouth that had to be numbed.  It was INCREDIBLY weird, due to the fact that my uvula, roof of my mouth, and part of my jaw went numb.

He walked out for a moment to let the local set in, while I started to wring my hands in anticipation of the impending pressure and noise I was warned about by the tech. I honestly did NOT want to hear cracking and crunching noises, so my anxiety level was through the roof.

Much to my surprise, the Dentist came back in the room, introduced himself to me, (don't ask me what his name was, my anxiety ATE any information I collected that day), and got to work.

All of my anxiety, worry, and nausea took more effort than extracting my teeth did.

He reached in, asked if I could feel anything, and upon my "NO" signal, he pulled.  He moved over to the other side of my mouth, and pulled.  He laid something on the tool tray, got up and shook my hand.  The tech asked me to bite down on some gauze, and I waited for him to come back and finish.

But, then I realized, he WAS finished!!!!  It took longer for the numbing agent to take effect than to pull my teeth!

Again, no exaggeration, 2 minutes, TOPS.  I was back in the chair for 20 minutes total.  Unbelievable.  I wasn't in any pain, and was surprised, and incredibly happy that a double tooth extraction took less time than me putting on make-up in the morning!

So, needless to say, I will actually go back to the dentist the next time I actually need to!

Check back for the other 2 doctor's appointments after I finish them!

Needles, needles and more needles.

It's a somewhat somber Monday here at the Infusion Center...maybe because it's Monday, maybe because I'm surrounded by people that have some sort of chronic or fatal illness...
I would actually put my money on the fact that it's Monday, because patients like me are used to this.

Non-sick people are usually a lot more uncomfortable here than the regulars.   What most of us have to deal with, from nurses that can't find a vein, to rotten side effects of these meds, would scare a regular person to death.

But not us. We are an army of long sleeve wearers.  We drink water like its going out of style, to stay hydrated enough ensure the "vein ninjas" don't have to fight to hard. We know the generic names of damn near every prescription medication, and where we can get it the cheapest. We choose Doctor's offices based on their office staff's ability to pre-authorize MRI's and expensive medicines.

So, this morning I got a pair of grumpy nurses that don't know me.

Even though I'm a regular here, I got the nurse I don't know, who apparently likes to run infusions as slow as possible.  I am supposed to have an epidural injection in my L-spine this afternoon, but at the rate this is going, I may have to re-schedule.

Situations like this always suck.  When you can tell, by body language and demeanor, that your nurse either doesn't like you, or doesn't want to be there.  This is the part where I feel like I can't communicate with them about why my drip got run so slow, or even ask what time they think I will be done.

I'm not the kind of person to really care what other people think of me, but when I have to come back, week after week, and you never know which nurse I'm are going to get, I try not to rock the boat too much.

So, because of my anxiety at the moment, I'm tormented about whether or not to call the pain specialist's office and reschedule, and torn between if I should or shouldn't ask the grumpy nurse if I would even be done for it. 

I'll just make my husband, Doug, ask her when he gets here with my breakfast.  He's SO MUCH BETTER with people than I am.  He has a way about him that just puts people at ease.  Me, well, not so much.

I took a Phenergan before the infusion started, and my eyes are getting heavy...will write more when I come out of my coma...

A day in the life of a Professional Patient...

That's what I call people like me. 

Professional Patients.  

We spend more than 20 hours a week in Doctor's offices, but less than an hour of that grand total is actually with a Doctor. 

I'm Penni, and I have a chronic illness. 

I try as hard as I can to NOT let it define me, but that becomes harder and harder the sicker I get.
 
My disease is one thing, but it has spawned multiple other illnesses, each of them unique.  So, I get to spend more than half of my awake hours in either a waiting room, an exam room, a procedure room, or an infusion room.
*NOTE; Infusion rooms are, by far, the most comfortable.

I figured I would keep this blog for the people like me, or maybe a Doctor will skim over it by accident, and see what it's like from this side of the fence, where I get to bitch about how inhumane Doctors can be, and how I can tell which ones have sold out already, and which Doc's still have a little "give a shit" left in them.

I figured I could write about my frustration with insurance companies, bad office staff, and medication side effects, just so I can come back and read all of this one day when I'm better...and hopefully pat myself on the back for surviving it all.

I have CIDP (Chronic Inflammatory Demyelenating Polyneuropathy).  Some people know it as Guillian Barre', but my disease is the chronic form.

I have already been thru a nasty bout of paralysis, and I thought it was horrible...

Then I went in to a remission phase, and thought I was fine.

Boy, was I wrong.



To sum up the last 3 years quickly...they are in another blog that I lost track of when I went into remission.  Since writing has always been therapeutic for me, I'm starting up again.  I was ill, progressed slowly, got pregnant with my daughter Mello, progressed MUCH more rapidly due to pregnancy hormones, survived IVIG, had a beautiful baby, and slowly regained my abiltiy to walk after her birth...

To see some of that blog, go HERE.

Okay, so FAST FORWARD to now (ish)

Tomorrow I will be back in the infusion center here in Annapolis, for more IVIG treatments.  I used to have them pump me full of Solumedrol while I was being infused, due to the wonderful side effect of aseptic meningitis that I seem to get EVERY TIME I get infused.  I stopped having them add the steroid because it didn't work to help the headache, and it made me eat $200 in groceries a week!

So, here's where I am so far;

15 months with Occipital Neuralgia-a horrible headache that doesn't quit.  The worst part of it, other than the chronic pain, is that I can't touch, brush, or wash my hair without serious difficulty.

It's called ON for short, and it's one of the most difficult things I've ever had to deal with.  The pain is always there, I would almost describe it as part migraine, because of the pain INSIDE my head and behind my eye and ear.  But the frustrating pain is the scalp pain.  My husband can't run his fingers through my hair, I have to duck from people with wandering hands, and it has to be pulled up in a pony-tail or bun most of the time to keep the pain "consistent"  on that side of my head.  If my hair is down, even small things, like the wind blowing, can make me have a horrible couple of minutes.  Once it's been triggered, it doesn't just go away on it's own. 

I'm known for my hair.  It's incredibly long, past my waist now, and I have a habit of dying it every color under the sun.  It used to just be chunky highlights or lowlights, with natural(ish) permanent colors, or bleach.

Once my treatments started, I was warned it would thin, or fall out, so I started choosing much bolder colors, usually red or purple, in anticipation of having to cut it all off, or shave my head.

I guess you could say I got lucky, and my hair stayed put, but now that my scalp feels like it's on fire...no more hair dye. 

I may go crazy one day, and make sure I have tons of pain meds on hand and try and color it, but since I can barely stand under a shower head, I don't know if I'm brave enough yet.

I found little things that help, such as ;

Dry Shampoo...(YES, there is such a thing!) It's an aerosol spray that reduces the oily feeling in your hair.

Ice...in just the right spot, for long enough, sometimes I can freeze the base of some of the nerves long enough to take a quick shower, (Downside-warm shower tends to heat up the "frozen" part quickly)

I have to sleep on my left side at all times now, which meant that instead of my husband and I switching sides of the bed, we sleep upside-down on our own sides.  I'm perfectly happy with this, other than the fact that I have to sleep in a pony-tail.  (You ladies understand what long term pony-tails can do...uuggghhh!)

So, if you suffer from ON, you may have the same issues I do.  Feel free to comment with any suggestions you may have!

As of right now, I also have issues with my L5/S1 and L4/L5 discs, which are herniated  to the point of sciatic pain. 

If I stand all the way up, both legs have a horrible shooting pain.  Depending on which way I lean, it can get numb, or stay in only one leg.

What I have become accustomed to now, is having to walk, while bent over at the waist.  Not the most comfortable thing in the world, but it's better than leg pain.

Now, due to my disease, my right leg is getting weaker and weaker.  I have "foot drop" more regularly now, and have started to rely heavily on a walker at home, and a wheelchair while out, to reduce my chance of falling.  I've developed a callous on the top of my right foot from being stubborn and trying to "walk" while I'm in my own house, but we have Berber carpet, so, the walker also keeps me from tearing the skin off of my foot.

My reflex is almost gone in my right leg, but my right hand has held up so far.  I drop things all the time, but I still have fairly good grip strength for now.

SO, there's a partial update! I will fill in more tomorrow and later this week about the trials and tribulations of fighting my insurance company for much needed medicines, and horrible office staff that has kept me from having the surgery I need due to their utter incompetence!

Feel free to comment, or send me a message if you have any questions, and you can click on the links for more info on the certain diseases.