The Monster

I HATE prednisone.. I turn into a monster when I take it. My heart races, I can't sit still. I get this burst of energy and I know I shouldn't act upon it, but I do, and I make everyone else around me join me on the prednisone/monster ride.

 

A few days ago I couldn't walk.  For the last month I can count on my hand how many times I left the house because I had no energy or was too sick or in too much pain to even get dressed.

 

But today ...I had a CRAZY prednisone burst of energy...

 

 

I took down the Christmas tree, all the decorations, dusted,  did some laundry, changed and made my bed, put laundry away, and took a shower- before my body stopped.

 

That may be a "normal" day for most "normal" people. That would have been normal for me pre-illness,  but for me nowadays...that was crazy.

 

I KNEW I shouldn't be doing so much, but I felt like I just drank five Monster Energy Drinks!

(And yes, I DO know what that is like- I did that pre-illness around 7 years ago when I was working long hours and still wanted to have energy to mountain bike when I got home, then make dinner and clean the house. I advise NEVER, EVER, EVER do that!)

 

 

Most days getting dressed and showered is a chore.  I have to rest after I take a shower.

Then I have to rest after I get dressed.  It takes me an hour to unload the dishwasher most of the time because I have to rest in between putting things away due to exhaustion, feeling ill, muscle pain, etc.

 

Today my body was swollen and achy,  my heart was racing due to the meds, and my brain didn't care. I HAD to move. I was irritated that the house was dusty, the tree was taking up too much room, and if I didn't get it done...well there was no option. My brain was DEMANDING to get it done, while my body was like "dude, you're stupid and gonna pay for this tomorrow".

 

 

I was a MONSTER to my husband. Since I was working around the house, sweating, hoping not to pass out, and in pain, I of course got pissed because he was off doing his own thing and not helping.

 (yes, SMART MAN. I see that now that I'm calm)

 

 I think he saw my eyes glow red and long, sharp fangs protruding from my mouth as I was "talking" to him.

 

 The "monster" that comes out when I take prednisone is usually my clue that I can start reducing my prednisone, because my body feels like I'm on steroids....LOL. I laughed after I just said that in my head. It was funny because prednisone IS a steroid, just not the type I was referring to.

 

I have adrenal insufficiency due to long term prednisone use. 

 

I try my best to not have any extra stress in my life to avoid having to supplement my cortisol with prednisone, but that doesn't always work so well.

 

 

This last episode happened Christmas Eve. I guess my adrenaline may have been up due to the excitement of seeing my family, then add exhaustion form the long day, and then pain.

  ALL OF A SUDDEN MY BODY WANTED TO STOP WORKING.

 

It was horrible. I'm not sure what happened. I was getting tired as usual, I started feeling "drunk" (and I wasn't drinking), then it was becoming difficult to walk. My joints were stiffing up more than usual.  So of course, It was time to leave our family (although I did NOT want to go).

The short walk to the car felt like it took hours.

 

My entire body was stiffing up, every step to the car became harder and harder.

I had to concentrate to walk, and I was sobbing like a baby because I was in so much pain, and every step was like moving a concrete block.   I felt like I was turning to stone!

 

 

This happened to a lesser extent a week prior with my arms and hands, and I'm not sure if it's from adrenal insufficiency, or it could be from the Lupus. I don't think it's the sarcoidosis because others in the support group don't have these issues, but I just don't know. The doctors don't know.

But I DO know that just the overall stress from the pain made my body start crashing.

 

 

 With adrenal fatigue I usually get feverish, nauseated, sharp stomach pains, dizzy, I start blacking out, and sometimes pass out.

 

 I always carry prednisone in my purse for an emergency (as my doctor ordered me to do, since I'm determined NOT to take it every day of my life).  So I took the darned prednisone and felt better.

I usually take it for four days, then start tapering down as long as I don't start the symptoms again.

 

 

 When I was first diagnosed with Sarcoidosis, prednisone was the first medication I was given to reduce the swelling of the lymph nodes, and to help with swelling, skin rashes, breathing issues, and joint pain.

 I was on daily high doses of prednisone  for over 18 months until the side effects were more than I could bear. 

 

My moods were AWFUL. Some days I would swear like a sailor (and I don't like swearing). Everyone in the house would hide from me.

Then I would apologize and start sobbing because it was like my body was possessed and I felt out of control. 

 

I also started having vision problems then found out that the prednisone was causing pressure issues , and also gave me many cataracts in both of my eyes. 

 

That was when I wanted OFF the drug.

 

So, long story short, I tried and tried to wean off and my doctor had to keep bumping the dose back because my body would "crash" and I could not function.

It was a slow taper, and after six months, and monthly cortisol tests that showed adrenal insufficiency it was decided I had to continue to take a maintenance dose, especially with any little extra stress.

 

Well, it's almost 2 am.  I thought I was going to die around 8pm when my prednisone monster inside left me, and was hoping to fall asleep early today to recover,  but another side effect to this darned drug is insomnia.  I am so exhausted and hoping my brain will shut down soon. So I'm off to watch a documentary or read a boring book on my ipad in hopes of falling asleep within the next few hours.

 

I'm not looking forward to tomorrow. I will be lucky if I can walk, but at least I have nice clean sheets on my bed, and can relax on the couch tomorrow in an uncluttered living room with the tree put away. 

 

I must admit though, In some ways I like when my monster comes out. I feel accomplished. I get things done in one day that can otherwise take me a month or more,  but I sure wish it happened on days no one was around to see my crazy Jekyll / Hyde routine.

 

Good Night/ Morning! xo



The Hummingbird

 

A friend of mine told me about the "hummingbird theory" he uses to keep going every day.

He has been dealing with Sarcoidosis for a couple of decades now, and suffers much of the same pain, fatigue, and other disabiling symptoms as me, so I often get extremely useful advice from him. 

He also is great at bringing me back to earth when I'm flying off the handle due to pain, medicine issues, and all the other issues that can cause a quick dive into emotional and pain overdrive.

His "hummingbird theory" came up when I was frustrated and having a hard time physically and most definitely emotionally.  

 

I wanted to know HOW  the heck he deals with this disease AND he takes care of an aging parent. 

 (I am fortunate that my kids are grown!)

 

He said (from my memory that is known to be bad- so maybe it's better to say: "what I got out of it")

was:  "Hummingbirds technically shouldn't be able to fly like they do, but they don't know it, so they just do.."

Really powerful words when you're sick of being sick and feel like giving up. 

 

...just do...

 

I have to do what I need to do to the best of my abilities, and stop thinking or worrying about what I can't do. 

 

I try so hard to be positive all the time, and admittedly have my "down" times, but I do think I worry too much about tomorrow or upset at the things I miss out on, instead of just doing my best and being happy with that. 

I know I can't physically do all the things I used to love- like mountain biking-but I suppose I CAN work on finding new things to love to do....

 

Maybe I can't go out with my friends when I'd like- but I CAN schedule an alternative back up plan incase I'm having a bad day, like ordering take out instead of going out to dinner.... 

Maybe I can't control what meds my insurance approves, but I CAN use the techniques  and exercises I've learned from physical therapy.

I DO have alternative pain cream, a interferential TENS unit, and a great friends that give knowledgeable suggestions that usually help.

 

This illness has actually BLESSED me with so many friends [that are unfortunately also suffering from chronic pain and/or a chronic illness(es)].

 

But there is nothing like having other people who REALLY KNOW how you feel, who can give helpful advice, be an ear when you need one, or tell you that you need to JUST BE A HUMMINGBIRD!

 

 

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...

 

 

 

 

Abandoned

When I first was diagnosed with Sarcoidosis, I came cross blogs that were started and just stopped with no explanation. I wondered if they got better and had no time to blog, or the opposite- so bad that they couldn't exert energy on it- or even passed away.

I abandoned my blog. I haven't posted in ten months! 

I never intended on it,  but for several reasons I stopped posting.

1) I was trying not to think about my illness.  

I wanted to shut down my brain. I didn't want to think about being sick. I'm still not sure if it was because I was in denial or actually facing the fact that my life has changed forever. 

I was trying to live life as if it was "normal", well my "new" normal.  People with "normal" lives don't blog, because it's just life...normal with crazy ups and downs that normal people deal with every day.

OK, I must say it sounds like I DID succeed in shutting down my brain-or at least that my rational was "out of order". 

2) I had no energy to do much.

My "get up and go" was (and still is) very, very limited.

EVERYTHING takes time and SO MUCH of my little energy. 

 Heck, most days showering and getting back into Pajamas is a great accomplishment!  

Last December I started an aqua Arthritis class at my local Y.  That was scheduled twice a week for 45 minutes.  Between that and any doctor appointments-I had no energy left to even think straight.

One swim class would exhaust me for the rest of the day, AND the following full day, but it was so worth it.  I was learning how to properly use my time and energy. I also felt I had some control over my own health, pain relief, and socialization by making it to the classes when possible. 

3) I didn't want to be deemed as negative.

I want to use my blog for others to understand me a bit better, and mostly for other chronic illness suffers to feel like they weren't alone- but everything I wanted to blog was a downer. If I had a happy moment, it was soon followed by the payback of pain. 

No one said I was "complaining" but I know many friends and family were reading my blog, and I think I was happier with them thinking I was handling things well, and not knowing how it really is.

4) Life became more complicated.

I kept getting more and more issues and diagnoses on top of Sarcoidosis.

Add Fibromyalgia, double vision, small fiber neuropathy, menerie's disease, vertigo, adrenal insufficiency, endometrial ablation, migraines, muscle weakness, muscle spasms, lupus, and a ton of new meds to the mix.

It was more than complicated.  It was depressing. 

 

 

......So, there are the main reasons I stopped blogging the past 10 months. 

Honestly, I'm too tired to even think of writing anymore now.

I've been getting my Remicade treatment the past 2 1/2 hours, so I thought it would be a good time to make my comeback.

I can't promise how often I will blog, or that it will not seem negative.

I can promise that it will be true to what is in my heart at that time.

I pray that by continuing to blog that I may be able to help other sufferers know that they are not alone.

xo Amy 

The Ring Of Fire: I want off this ride!

Around and around and around I go on this "Ring of Fire" ride I've been the last couple of weeks.
When I look at these kinds of rides I know I'll puke on them. I don't like them and it would be torture to physically be on a dizzy ride like this for me.

Right now I feel disoriented, nauseated and my body is on fire. The burning pain is worse than ever. The really sucky thing is I just bogged about it, writing the last hour- and I didn't save the draft so I lost it all. But I'm still wide awake and nothing else to do so I'll try to make this redo shorter and better than the one I just wrote.

This is day two of lack of sleep. Yesterday I tossed an turned until after 4:30am and slept 3 hours. Today it's the same. It's so hard to sleep when you're in pain- and it's probably the meds too.

I saw a neuro/pain therapy Doc today. He drew the lovely circle of pain and said that the pain gets worse without sleep. I liked this dr.. But no duh! I could have drawn it and explained it in more detail. So now I'm on more meds, but thankfully they are to treat the nerve issues and not a narcotic. Although I would like to get rid of the pain. He told me he could do that...but I'd be sitting in a corner drolling. He will help me get to be able to function through the pain. He said "you have to break the cycle of the circle. So here I am with my sleep cycle broken?!  ugh. 
I usually sleep well. But days like these when I don't, the pain gets uncontrollable.

Last week a little cold almost put me in the hospital as it immediately settled in my chest so I had to get on antibiotics and increase the prednisone. I hate it. I get emotional and can't sleep while on higher doses but it keeps my body stable from crashing and kept me out if the hospital. It could have been because I just had my first Remicade IV treatment that caused the cold I caught to go rampant like that.

My first treatment went well other than being a test subject for a intern that poked me three times trying to do my IV. (Then the nurse had to do it). Next time I'm in pain and someone with a huge needle is looking unsure as they approach my vein... I'm going to say "no". When I'm in this kind of pain a little needle poke throws me off the deep end. The intern "doctor" weaving in and out poking my vein put me in tears. When people are getting treatments for cancer and other serious illnesses, it just doesn't seem to be the place to practice. At least I didn't think so that day. When feeling ok and not so sick I love helping- so don't get me wrong.


This babbling, um blogging thing is so much harder than I thought it would be. When you're not feeling well it's hard to get your words down so if someone wants to read it then it makes sense. I get all these great ideas in my head around my amusement park theme, but I haven't been jotting them down. It's hard sometimes to make my illness a fun theme I guess. I planned on blogging once a week but my days blur together and here I am. Just rambling on at 4 am. I figured it was better than tossing and turning.


So... Yeah I'm in pain... Blah blah blah. Ouch. Feels like I'm a burn victim and someone beat my bones with a metal pipe. I actually had two days after my IV treatment where the pain wasn't so bad. I walked into the kitchen one night and stood there in awe because I WALKED into the kitchen without grabbing the walls or furniture along the way! That lasted for two days. I still had to use my cane if I left the house, but more so to keep balance then for the pain. I tend to walk drunkardly and loose my balance for various reasons from low cortisol levels to leg muscles just giving out for a second.
So anyhow 2 good days then I started getting sick and I went 20 steps beyond pain I've had before.

I also saw a ENT doc this week since my ears always seem like I'm under water and I get buzzing and my sinuses have been awful for months and months. I see him next week to review the CT scan. Sarcoid can go into the sinuses. But the treatment is all the same so it's not a huge issue to me if it's that. I'm worried if there is damage to tissue or I need surgery. I'm also going to get the results of a allergy test. With my luck I'll find out I'm allergic to chocolate. Maybe I should go to Hershey Park this weekend just incase? Lol

Oh I think I'm delirious from the lack of sleep.

My next IV treatment is this Friday. I'm looking forward to it and hope between that and my six new meds I've taken this week that I will get rid of this pain.
The doc today said that though he knows the sarcoidosis is causing all this pain-When he looks at me I am fibromyalgia patient. Basically everything hurts right now. The blankets hurt my arms that are on fire. My husband lovingly touched my hand and it was pain. Wow. I'm so sad to know that there are so many other people going through this horrid pain.

I am so blessed to have a huge support group to help me through this and keep my spirits up. For example, My Mum- in- law dropped her plans to come to my dr visit. She's been my strongest support with love, friendship, spiritual guidance and true understanding since she battled cancer and is also a retired nurse.

I had those two days a couple weeks ago so I have hope of seeing that again. If not.. This level of pain will become my new 'normal' and I'll be ok. I am amazed at what our bodies/ brain can do to adjust to pain. I've learned my body is a 2 week cycle in most of these "rides". I just want to get off the circle of pain going around and around.

wow. It's 5:30 am. I bet I'll have to edit this crazy rambling- then again I guess that's why I have my blog. This is crazy, sleep deprived, steroid induced me. Lol

I think my brain dumped all it had into this blog so now I shall try to sleep.

I'm going to close my eyes and picture laying in a beautiful field , looking at the clouds and trees. I can feel the hot sun beaming down on me (that crazy hot tingling I have) yet there is a nice cool breeze ( the ceiling fan). Hmm.i may be able to sleep a few hours and have a nice dream of running around in sun on a beautiful summer day.