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.