Rock Bottom Plunge

 

My body is currently on the plunge to rock bottom. I'm trying to stay positive. Live day to day. Hour to hour. Moment to moment.   I hope this is going to be a quick "ride" and I will be okay.

 

 It's so hard to be positive when there is no relief to look forward to. 

 

 It's like being on the top of a rollercoaster hill.

 

You hear the clicking sounds of the car as you get closer and closer to the edge.

With each sound your heart drops. You know at any moment you will be screaming as you plunge to the bottom.

 

 You tell yourself  "it's okay...no one dies on these rides...
Oh geeze...well sometimes accidents happen..
But what's the chance of that? Like one in a million?"

 

One in a million... Could I be a part of that doomed statistic?

Statistically I shouldn't be suffering with my chronic illness.

 

My brain doesn't function like it used to pre-illness...but then the math is intriguing me now.

So, my primary disease is Sarcoidosis ( I also now have fibromyalgia, small fiber neuropathy, lupus, and a few other things- that's for a later blog...). 

 

According to a Cleveland Clinic medical publication on Sarcoidosis :
As a Caucasian, my chances are 11 in 100,000 to get the illness.
Only 1/3 of those need treatment, then out of that third, only 20% are chronic.

 

Well....let me try to figure this (and please no comments because my math is probably so far off due to "brain farts  fog").

11 in 100,000 is equivalent to 110 in a million.

110 divided by 3. Now I'm 37 in a million.
Twenty percent of that makes me 7 IN A MILLION...?

 

So my chances of being doomed is really ONE in SEVEN?

 

I guess if I wasn't in so much pain (and if I cared at the moment), maybe I'd think of my lucky odds as an opportunity to play the lottery?  After all, there is more than a 1 in 15 chance to win a prize in mega millions...

 

 I just went WAY off course of what I was originally going to blog about!
 

 

So, anyhow,  now that I know I have a pretty good chance of being in an accident on a rollercoaster.....

 

 (yes, I think I've descended further in the last few paragraphs, however in "real time" it's six hours since I started the first sentence)

 

Back to discussing my ride to Rock Bottom. 

 

Over the past year  I was getting Remicade IV treatments every 4 weeks. What that did was not only help slow down my disease's destructive path, but it also put my body into a routine to the point of knowing within a day or two- of when I would have a "good day".

 

For example: On the first Friday of the month,  I would get my 3 hour IV treatment at the hospital.
 I would go home and be in bed for the weekend (due to extreme fatigue and pain from my illness, not from the IV).

By Monday, I started feeling a little better.
A little less fatigued.  

I'd start feeling a bit more clear-headed. 

 

Every day I would go uphill for a change!

 

By Wednesday I would be able to do little things like empty the dishwasher or put on makeup without getting exhausted beyond recovery. 

 

My sores on my skin would lessen, the burning nerve pain would get just a tad better, my muscle and bone pain would get lesser and lesser. 

 

Ten to eleven days after my treatment I would start to feel "normal" for one to two hours a day!

 I could take a shower and shave my legs and even have the energy to wash my hair too! (it really is the little things that count!)

I would have these little time frames for 4-5 days. I could plan things that week!
I could go out to lunch with a friend, go to a store... just get out of the house for an hour!

 

Then after that time frame,  I would start to decline a bit more every day until I ended up homebound again on the 3rd week of the month.
By the last week of the month I suffered and ended up couch/bedridden again, but I would get to count the days to my treatment  knowing I would get some relief again.

 

However, as of today, my insurance has declined further treatment. 

 

cartoony version of me...freaking out
 

 I know it's expensive. My bill is for almost $15,000 every month.
 I meet my deductible, and the insurance has paid for the rest. 
I'm sure they don't like me.

 But those TEN HOURS I get every month are PRICELESS.

 I look forward to it.
 It is the little bit of "living" I have.

 It makes the other 25 days of the month, and the rest of the 22 hours of the "good" days worth struggling through.
 It gave me HOPE.

 

I have a good doctor that is appealing the decision. That's why I said "as of today".
I know he will fight for me. 
The first time it took him five months to get it approved. What if it takes that long again?! What if they decline me all together?

 

So, here I am today.

Past due my treatment.

My legs are beginning to fail me already, the pain is getting unbearable, the" brain fog/ twilight zone/ drunk feeling" I get is also back.

I'm scared. I know every day will be harder and more painful. 

 

I have confidence my doctor will do the best he can, and if need be, probably find me alternative immune-suppressant medication. But I KNOW this one works for me.

 

 I've spent over two years finding the right combination of medications.

 

 I don't know if I have any more fight left in me to try again.

 

My positive attitude fades as the pain, fatigue, and other issues take over. 

 

This is so hard.

 

 I know I  have to look at it as "this moment".

 

 

I can only hope that I get my treatment soon so I don't continue to go downhill.

 

It doesn't matter whether you're fighting a chronic illness or not... 

Who hasn't been on the frightening ride going down?

 

If you're not fighting an illness, I know it's hard to comprehend how things can change in a blink of an eye.

 

  In one moment I'm happy and laughing, and in the next I have pain so extreme that it's almost like an outer-body experience because it's beyond what my brain can even register.

 

I am lucky to have family and friends that try to understand what I'm going through.

 

There is nothing greater than someone willing to hold on to you as you fall, and not give up on you.

They would rather go down with you fighting, than to let you hit rock bottom alone.

 

Luckily, I have people in my life that I know I can depend on to be there with that helping hand, just when I need it the most.

 

 

Heck, with all this luck,  maybe IT IS time I started playing the lottery...

 

 

 

 

Nervous, anxious and excitedly waiting

If you've ever waited in a long line for a crazy, scary roller coaster ride then you probably know the feeling I have right now.

The closer you get, the more your nerves start flaring. You start getting a bit anxious as all of a sudden you remember all the freak accidents that have ever happened in the last 10 years. One part of you wants to run from the unknown, but at the same time you are so excited and ready to go.

This is me today as I'm waiting to start a new treatment this afternoon.

It took five months and a lot of work from my doctors to get approval from my insurance company to be able to try this Remicade IV treatment for my sarcoidosis.

I'm excited because from what I've been told- this could be the treatment to give me back my "normal" life (although after fighting this illness I wonder what my "normal" is supposed to be. I don't want to be in pain anymore. I guess that's "normal"!) that the other medications haven't been able to do and it may even help get me into remission.


Well, in that statement alone I bet you can understand where the nervousness and anxiousness comes in.

What if I have a bad reaction and can't take it?

What if the insurance company doesn't approve enough treatments before it has time to work?

(Currently I'm only approved for the first 2 doses that are 2 weeks apart)
It is time enough to get the approval for the next one? It has to be dosed right especially at the start.

Will I have any side effects?

If it does make me feel better.. How long will it last?

Can I finally get off this darned prednisone?

What if it DOESN'T work ?!
Then what? This seems to be my "last hope" med.

So much seems to be riding on this new treatment plan.
It could be a miracle drug for me. It could keep me stable where I'm at without further damage or disease spreading. Or nothing- and I need to get used to my new not-so "normal".

I'm usually the calm, cool, collected one with the glass half-full, and I still am right now (ok- trying right now) but .. there are too many "what-if" scenarios going through my head.

Just as my thoughts start going over board crazy in the worst-case scenarios..
My husband interrupts me in deep thought. ( I dunno maybe by that point I was talking out loud like a crazy woman? Lol)
He is so caring. ( And brave! It takes a brave man deeply in love to interrupt a nervous, anxious, excitedly crazy wife deep in thought -or perhaps talking to herself out loud! )
As I was discussing my concerns with tears in my eyes, he grabs his phone and says "wait... I know what can help in this situation... Let me read this from my loving wife" (yeah, that's me he's referring to.)

And so he read a verse I sent to him earlier that morning as a devotional for the day.
 I kinda smiled at how smart I was to send it to him (and I think somewhere in the conversation he called me his "wise, beautiful,loving wife" as I now recall)
yet the "take your own advice" I heard him kindly saying 'in between the lines' did make me roll my eyes as he read Luke12:24-26.

Then guilt set in as I realized at some point I may have gulped down that last half that was in my glass.

 

I know God will provide.
I know there is a reason and purpose for this happening. I can see some of the good that has come from this already.
I know God is with me. Just one example is how blessed me with such a loving husband to walk this path with.


I know I should not worry.
I know I should just take it one day at a time and do my best with that day I'm in.
But I know knowing all that still makes it hard to stop wondering and worrying ...you know what I mean?