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.

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?

30 Things About My Invisible Illness You May Not Know

 

Please check out Invisibleillnessweek.com

 

1. The illness I live with is: Sarcoidosis.
Sarcoidosis is a disease that has no cure, and can effect your entire body.
It currently effects:
My lungs- which is controlled well with inhalers.
My joints and muscles- The joint pain throughout my body (from my jaw to my ankles) is my worst complaint. The occassional weak muscle and a leg just giving out can be very scary too.
My skin is effected with redness, bumps and sores.
The inflammation also effects my vision (recently confirmed the disease is not there, thank God- but on bad days my eyes swell).
My small nerves are effected- which results in a burning sensation in most of body.

When I was first diagnosed after many tests and a week in the hospital like a medical case on "House", the first Dr I had acted like it was no big deal, and it would go into remission within a couple of weeks. He spoke to his interns, not to me really, like I was not even there. Thankfully he referred me to see another (very caring) Dr to confirm the diagnosis, and I never went back to the other office.

2. I was diagnosed with it in the year: August 2011.

3. But I had symptoms since: at least since 2008.
 I was having bad "asthma" consistently, but after all these recent tests, I've been told I don't have asthma ( but my breathing issues are the same as they have been all these years). It's the sarcoidosis.

4. The biggest adjustment I’ve had to make is: Not being able to do the things I want to.
I can't go places where there is more than a little bit of walking or standing.
I have to be careful with the sunlight. My eyes are very sensitive, and other than the usual burn for a fair-skinned person, the sun increases my inflammation and fatigue.
 I have to make a plan of what's most important to get done- silly little things like going to the drug store to get my medications can be a big deal on a bad day .Have you ever read "The Spoon Theory"? If not, please do! It explains how most people with a Chronic Illness feel when trying to get through a day.

5. Most people assume: Because I don't look sick, It must not be THAT bad...and I will get better soon.
Now I must say that I ALSO hope I also get better soon! Even though there is no cure, Sarcoidosis can go into remission for some time. So compared to other illnesses, I am fortunate that this is a possibility. As long as my meds keep my body from having permanent damage, I have hope. But meanwhile it doesn't make this any easier.

6. The hardest part about mornings are: I don't feel "refreshed".
Even after a restful sleep I wake up exhausted, dizzy and the foggy feeling like I'm still in a dream and someone needs to wake me up (And yes- I had a sleep study and it's not sleep apnea).
 The first step out if bed is usually very painful and I grab the wall every morning for balance.

7. My favorite medical TV show is: It used to be House.
 It was the one place I would hear my illness almost every show. The first diagnosis for anything crazy you would hear "sarcoidosis"(or lupus).

8. A gadget I couldn’t live without is: My iPhone.
 It's awesome when you are at the dr office and he mentions a procedure, drug, or disorder you have and you can look it up when he leaves the room for a minute, then have good questions to ask, and leave with an educated understanding. It's also great to have while in the waiting room for all the office visits and tests to keep amused.

9. The hardest part about nights are: Night time comes too soon.
There was so much I WANTED to accomplish but didn't. Once I do go bed the bad things are: Being exhausted but can't sleep, or waking up in the middle of the night sweating or in pain.

10. Each day I take 13 pills & vitamins. (No comments, please)
1 vitamin, 12 pills,  plus my 2 inhalers. Fortunately my Dr likes to try to keep the meds minimized and reduce when possible (a few weeks ago I had 27 pills)

11. Regarding alternative treatments:
I tried chiropractic and herbal meds in the beginning. I learned a lot about eating healthy and stopped eating foods that are bad for inflammatory diseases. But I stopped going because they kept wanting me to take supplements- I was up to 30 a day. It was very expensive because insurance doesn't cover, and once I was given supplements to increase my immune system that made my sarcoidosis worse (since it is an immune disorder)- I was done. Overall It was worth it for the dietary info.

12. If I had to choose between an invisible illness or visible I would choose: NEITHER!

13. Regarding working and career:
I used to be a bank manager for over 5 years. Due to my illness, in February this year I stepped down out of management. It was a hard decision but my health had to come first, and how can you manage other people when you're sick and can barely make it through the day yourself? Last month my body just shut down so I went on short term disability. It has recently been extended to November. I will be starting IV treatments this month. I'm hoping it's going to be a miracle drug for me so I can feel "normal" again and go back to work. I miss my job and I'm afraid that I can lose my job since my FMLA is going to be used up. That brings up other fears. Once I go back and if I get sick...then what? But I'm trying to not look any further than TODAY right now. Thinking about the "what if's" isn't going to help anything, and stress is NOT good.

14. People would be surprised to know:  I get very anxious going places alone -because I can get "bad" quickly from the pain, inflammation and fatigue.

15. The hardest thing to accept about my new reality has been:  Asking for help. I'm really bad at this.  I want to do things like I used to. My family gets upset with me when I don't ask for help, especially because they don't know HOW to help me unless I tell them or ask. Sounds so easy to ask for help...but it is soooo hard.

16. Something I never thought I could do with my illness that I did was: I'm still trying to figure out my illness so I can't answer this one.

17. The commercials about my illness: None. Most doctors don't even know about my illness. Heck, spell check doesn't recognize the word sarcoidosis on most programs either!

18. Something I really miss doing since I was diagnosed is: just being able to go to the store or mall to walk around and just window shop.

19. It was really hard to have to give up: walking my dogs. I haven't walked my dogs in over a year. I miss that so much. I also miss biking.

20. A new hobby I have taken up since my diagnosis is: well..blogging. And I have been dabbling in some crafts. I have list of crafts I want to do when I feel up to it.

21. If I could have one day of feeling normal again I would: Grab my husband and kids and go mountain biking for the day, then take my dogs for a long walk....then....?
I have many different scenarios for this one. That was the first one that came to mind.

22. My illness has taught me:
 My husband is really my soul mate,  I have found who my true friends and family are, and all though some days I may feel like I'm going through this alone- I am not!

23. Want to know a secret? One thing people say that gets under my skin is:
"But you look good.."

24. But I love it when people: take time out of their busy day to stop by to put a smile on my face.

25. My favorite motto, scripture, quote that gets me through tough times is:
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. (Proverbs 3:5-6)
I know one day I shall look back at this time and be able to acknowledge good that has come from it.

26. When someone is diagnosed I’d like to tell them:
You're not alone, but it can seem like it more often than not. It is very hard for other people to comprehend what you're going through even when they want to- so find a support group of people who understand 100%. Also, educate yourself on your illness and don't settle until you have the right doctor that not only understands your disease, but also cares about YOU.

27. Something that has surprised me about living with an illness is:
Some of the people who you thought would be there for you- aren't.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Bring me some dinner, hold my hand in prayer, and then have some fun conversation.

29. I’m involved with Invisible Illness Week because:
There are so many people with invisible illnesses, yet so many of us can feel so alone at times.

30. The fact that you read this list makes me feel: Grateful and loved.
 If you read all of this, then you either love me, or you're probably going through an illness yourself.

If you know someone who has an invisible illness, pick up the phone just to say 'hi' and brighten their day.
Ask them some of these questions so you may be able to understand what they may be going through. Or just ask "What is a typical day like for you?"
Your love and understanding can help someone more than you may know....

Love, Amy

House of Mirrors

When I was younger I loved going into the house of mirrors. It was funny seeing all the distorted versions of myself and my friends as we laughed and made funny faces in the mirrors.

Of course mirrors started becoming less of a friend when I was a teenager. Image was everything. Looking at myself with a fat face or a bubbly waist just didn't seem as funny anymore.

I was going to say as an adult that whole image thing changed, but that would be a lie. I still like to look my best. Who doesn't?



(Note:this is an exaggeration)

When you're sick, the mirror can be scary. Sometimes it feels like you're in a dream and that image you're looking at couldn't possibly be you.

Sarcoidosis is an immune disorder and an inflammatory disease so there are many mornings I wake up and feel like the stay-puff marshmallow man. I've gasped in the mirror as my puffy face glares back at me as I poke at my cheeks wondering what happened.




Other days I look in the mirror to find my face, chest, legs and arms are full of redness and bumps that weren't there moments ago since the disease also effects my skin.
This usually happens a day or two after being outside even on an overcast day.



Some meds I've taken would make my hair fall out and give me horrible peach fuzz on my face and back that I would frantically get rid of.


I hate the days when I'm feeling pretty good, but then I look in the mirror and then feel otherwise.

Having an invisible chronic illness like sarcoidosis means to other people you don't look sick  on the outside even when you are feeling so much pain, fatigue and ' just blah' (like when you have the flu).


I suppose if I didn't look in the mirror everyday, or just didn't care how I looked, then I WOULD look SICK.


However,  mirrors are still my friend. Like a REALLY honest friend that says "Girl...you need some makeup...and that hair?!.." Yeah, that kind of friend that you wish would lie at least once in a while. LOL



I think when you are sick with an illness like mine,   you fight hard to try to stay healthy.  You  do everything in your power to at least try to look your best so you can feel good..... and try to keep your former "normal" self.
(yeah, there is a lot of "trying", but it's better than giving up!)


I'm on short term disability right now. I'm sick, fatigued, and in too much pain to work. Heck, it takes most of my energy (and sometimes the entire day) to get showered, dressed and presentable, but I do it for me.


 I also do it for my husband. OK, fine. I'll be realistic.  When I'm feeling this sick- unless I have to leave the house, the only reason I get out of my pjs and showered is for him.
 I usually am in a panic an hour before he gets home so I can look somewhat decent. lol


He takes such good care of me, and I like to look my best for him. I know he loves me no matter how I look, but I sure do like him looking at me with a twinkle in his eye. That's good medicine in itself.