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.