Freak Out

(This was written 12/3 and like many of my drafts- I never posted it but here it is)

Yes, there is a ride called "Freak Out". It's the type of ride that I wouldn't go on even if you paid me.
Right now this is my life.
Why am I freaking out?  That would be the question most of my friends and family would ask me, if you haven't already.  After all, I seem to be doing better after my treatment last week.
Yes, I can walk better this week and I am thankful for that! But...
*My pain has increased.
*I'm tired of putting on a smile that is fake most of the time.
*I just got the official notice in the mail that my job is being posted.
* I am questioning all the sacrifices I made over the last 10yrs to get a good career.
*I am an emotional wreak.

This has all been building. I actually "ran away" from home a couple days ago for a night.
I had been saying for a week that I just need to get away.
The four walls of the house have been closing in on me.
Every little stupid thing has been irritating me.
The morning I "ran away" was right after I called work about all the personal stuff I had at my desk that had been left the last day I unexpectedly left work and never returned.
After the conversation that someone would bring my stuff that was already packed up, I took a shower and cried and cried and cried.
When I got out of the shower...I just had the urge to go. I wanted to get away. I was in "Freak Out" mode.
The logical part of my brain was still working, because I managed to pack a bag, as well as gather up supplies to take one of my dogs.
Cujo is more of a companion dog. He always knows when I'm not feeling well, and he's always there to comfort me. I need him when I'm freaking out. So taking him was really a no-brainer.
I felt really bad leaving behind my other dog as she was trying to leave with me, but I just couldn't deal with her or anyone else at that moment.
Well, long story short- I ended up driving about 100 miles before ending up at my Grandma's house.

It was a nice drive. I wasn't emotionally driving. I didn't know where I was going, but I was enjoying the beautiful day with my dog listening to some music and making a couple short stops for a bathroom break and some food. 
I really wanted to go to a hotel by myself and just get out a good hard cry for a couple of days, but my husband liked my alternate idea of visiting my Grandma's place better.


I still need time away. The emotional part of me wants to run or just stay in bed and rot away.
The logical part wants to fight,  take care of the people around me, and not worry them.

 I started seeing a counselor that specializes in Chronic Pain.

First she helped me realize that I try too hard to ignore my pain.  She said it's good to try to keep my mind occupied with other things- but trying to "trick" my mind like it's not there isn't the way to deal with it.

I guess she didn't really make me "realize" I try so hard to ignore my pain. I already knew that was what I was doing.  Really what she did help me with was to make me understand that it's OK to be upset.. and angry... and frustrated that I'm in pain.
 I need to acknowledge it, let the the feelings happen for the moment and then try to find solutions to reduce the pain.

Then she opened my eyes when she handed me a chart on grieving.

I am grieving the death of my "old" self and the way life used to be.

I guess it all makes sense why I feel this way. I'm "freaked out" because I'm comprehending that this is a life time illness and that means my life is different and I have no control to change it.

Car Ride

 

I know I haven't blogged in over a month. It's not because I haven't had anything to blog about- I do and it's funny how I see my life more interesting when I look at a situation I'm going through and think "How would I blog about this?"

 

Oh the many ideas I've had, and the drafts that never posted- because on my bad days I can't concentrate enough to make sense, and on my better days I try to accomplish something or better yet try to have lunch with a friend, which uses my ENTIRE day to accomplish since showering, getting dressed and putting on makeup are now considered entriely sepererate events in my life.  Add going out of the house and having fun chit chat? Well..that is enough to send me to bed for the rest of the day (but well worth it!).

 

 

 

But as of right now at this moment I'm sitting here at a car dealership with my husband, and I'm waiting to see the financial manager to purchase a car.

My pain level is about a 7 today in my legs so I'm doing a dance in my chair with my restless achy legs while waiting, so I decided to keep my mind occupied by blogging while my husband is chatting and getting us a good deal.

I've decided to buy a car instead of leasing like I have since I now have a mechanically inclined husband to keep the car maintained, and well.. I don't know if or when I will ever get well enough to go to work and at this point I'm considered homebound.
 I basically only leave the house for doctor appointments or when assisted with someone else to go to church or the store if needed. So I don't drive many miles and buying a nice used car is smart.

I had to laugh out loud when we were checking out the car and when my husband opened the trunk, my first instinctual question I asked was "Will my wheelchair fit back there?" .
I haven't had to use my wheelchair yet, but knowing it's in the trunk of my car if I need it gives me less stress going places. 

I guess laughed because I realized how quickly my priorities have changed. Three years ago when looking for a car it was questions about the stereo and sunroof. I thought thinking about a wheelchair was for 30years down the road.


Yep, I think I am in a new phase of life.


With grown kids and my current health I now look at a car totally different. I'd rather not have to look at trunk features for space for a wheelchair, or safety features for me like Onstar so I don't have to mess with my mapquest phone app or GPS anymore.

I must admit I get lost some days going to the Dr I see every month if I take a different route due to construction or something- in the area I've lived my entire life!!

 That's why I don't drive much anywhere anymore even on my better "pain days". The brain fog and the chronic fatigue are sometimes the most debilitating part of my illness.

But I must admit then I got super excited when I saw the emergency button for Onstar. That will make me feel more secure too.
 It's scary when I can leave the house feeling good, and knowing within seconds a blanket of pain, nausea and almost a drunk feeling can come over me.
 I'm getting better at knowing when those days can happen, and will try to get someone to drive me.  Then I usually drive them crazy as I chit-chat non stop until I get too exhausted toget the words out the right way (I start mixing up words) .
Which reminds me I should finish my draft about verbally throwing up on people when I've been alone all day and not out of the house for a week. 


Well I just signed the papers for the new used car. It's a Pontiac Vibe GT for those of you who may wonder.

As soon as I hopped in the driver seat I knew this was my car. It has all the features I wanted-and more- and when all the controls and the overall feel of the car were the same as my current Camry SE, I was love with it.
I told my husband I'm going to get it decked out with 'Hello Kitty' seat covers. (To prevent him from driving MY car everywhere since he really liked it too). LOL I was kidding him. ..I think.  I dunno. This is kinda pukish cute. It's like driving a real live barbie car. Oooohhh. barbie theme...

Ok, Ok for my family and friends out there reading this...I really am joking and I haven't gone insane quite yet.

Anyways, I still have my lease car for another month so we are taking it back home too. So that means I need to drive 50 minutes home.
We have been here at the dealership for almost 4 hours now, and I'm not sure if I'm well enough to take the car home.
We are going to grab a bite to eat and then I have to see how I feel. Usually some food for energy and a sugary coke to drink will perk me up.

Worse case scenario, we have to leave one of the cars and my husband will come back later with someone.

Well lunch was delicious. I think my sugar may get messed up from the medicines I take if I skip a meal. I made it home with no problem and enjoyed driving my new car, although as I was following my husband in my old car that I will be turning in soon, I was sad too. I loved that car and it was the first time ever at the end of a lease I didn't want to turn it in for something newer and greater. (Yet I don't love it enough to buy it for 5 more years!)
It is just like my life.
I loved the road I was on and the life I had a couple years ago. Sometimes I get sad when I think about it, yet I'm so happy in so many ways with the newer version of me and this new adventurous road I'm on.

Want to know the best part of my new path?

I'm learning to stop and enjoy all the beautiful people, places and things in life everyday. (Even when I'm having a bad day and I'm stuck at home).

Because of that-If I were to pass away tomorrow, I have no regrets. Many wishes and dreams, but no regrets.

Luckily for me I have awesome doctors so that won't be happening anytime soon from my illness- but it's a great feeling to be complete in that way.

Yeah, deep thoughts from buying a car, huh?

Now it's time to sleep. The day at the dealership exhausted me. My brain is mush and my body feels like I ran a marathon ...then tripped and fell tiredly into the street.. and then a truck came by and ran me over. No joke- but it was a great day!

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.

 

The Parking Lot

Well, I guess this is the place to start: the parking lot.

I'm now one of those people who keep circling around before parking. I need to find the best spot to park. Sometimes when the lot is too full, I leave even when I REALLY want to be there.
I wasn't always like that.
Heck, I used to park far away and enjoy the walk in.

My life has changed a lot over the last year since I was diagnosed with sarcoidosis.

Most days I have pain in every joint from my jaw to my ankles. It feels like the pain you get when you burn yourself from a hot pan in the oven.

So a place like a parking lot is a scary place for me now. The entrance looks so far away.

Is there a handicap spot open?
I hate using my cane.
Is there a shopping cart nearby?
How many dirty looks am I going to get because I look too young and healthy to possibly need that spot? What if there is only one spot left and someone worse off than me needs it?
If there is a non-handicapped spot that is just as close and opened I will always use that space instead for that reason.
Sometimes the regular parking spots are even closer to the entrance than the handicapped spots.

I never noticed things like that before.

Heck, in the past I may have even looked at someone who parked in a handicapped spot with an unintentional odd look wondering if they borrowed grandma's car because they sure don't look sick. I know I at least thought that.
Of course now I see things differently.

Sometimes I walk into a place looking fine, maybe even with a little spark in my step on my good days. But on the way out I'm usually trying to hold the tears back from the pain as I struggle to make it to my car.

Shopping carts can be my best friends. 

I find one near my car whenever I can on my bad days so I don't get the stares if I have to use a cane- or the odd "what's wrong with you? Did you break a leg?" -usually from an elderly person also using a cane!
On my good days I always find a cart because when I make it out of the house I love wandering through the store and that cart can save me when the shooting pains start and its time to go.

My husband tells me to use the motorized scooters when they are available. I'm afraid to. I'd probably run into things like shopping displays and small children. Lol
But I think I'm really more afraid to NEED to use it. It almost feels like then I'm giving up, or not fighting my body back hard enough.
 
It took me months and months to even start using a cane. But I realize that using a cane on my bad days is better than walking/shuffling around looking like I may have a drinking problem, a severe case of hemorrhoids or a literal stick up my butt! Lol

A couple of weeks ago was the first time I used a wheelchair.

 I really wanted to go to a museum and I knew that was the only possible way, so agreed with my husband to use one they had available. In one way it was nice because I wasn't in pain and felt kinda special with my family pushing me. But of course it sucked because there were areas I couldn't go that had steps or was too full of people to get in.
After that I kinda want to buy/get a script from the Dr for a wheelchair so I can go places like an amusement park without worrying if they may have one. But, I just can't. Like I said earlier, it's like then I'm giving up the fight.

Well.. It took almost a week to post my first blog since I haven't been feeling the best and I was searching for the best way to start my blog. I was even thinking of not starting it, even though I need this blog to help get my feelings out.
I don't know if anyone will ever read this, or if this made much sense. I'm not going to proof read otherwise I'll never post it. So here I go.. I'm parking , um posting now :)