Don’t wait!

I moved away from my hometown 20 years ago.  Everytime we come home for visits we try to visit as many as possible.

The older everyone gets I feel worse all the time about not making more time or longer visits.  Over the past year I  had been trying to get together with my Great Aunt Shirley and Gr-Uncle Sam.  They are just as busy as I am and it seemed we would keep missing one another.  We would talk on the phone or send each other letters (you know the things people call snail mail).

I finally was able to connect with them both last December.  It was so much fun. We talked forever.  My Uncle (a young 82) had just been learning how to use his new laptop.  We searched various sites and he  saved my blog and facebook page so he could read my stuff.  He also had me add my email into his contact list.  I didn’t want to leave.  Not only were we sharing stories but my Uncle is wonderful at debating.

My Aunt is amazing in her own rite.  She started out singing as a young girl on a radio program.  She was in a band that played in (omg bars), and cut records (you know those vinyl things people are using to decorate their homes). I remember hearing that she would still get royalty checks (for like under a dollar).  She still teaches piano.  She has had so many students.

They both welcome all of the children and families into their home.  Shirley teaching music. Sam either reading a book or telling the best poems.

While visiting I kept looking at the clock.  I knew I had to go. My mom had a special dinner cooking for me.  It was hard but I finally left agreeing to stop and see them at Easter and would be looking forward to Sam’s emails. I also promised that if he would find all of his poems that I would type them up for him.  He loved that idea.

We exchanged a few emails in January.  Then in February he went into the hospital with what was thought to be the flu.  In a short time he was diagnosed with Lung Cancer.  The disease was progressing fast.  We had a free weekend- no volleyball or other commitments so we planned to go see him.  He was still in the hospital.

We were then hit with one of the worst snow storms we have had in a long time.  I kept watching the weather sure we could go.  My husband, mom and co-workers told me that I was not going.  I went into an empty office, called my Uncle – I kept apologizing to him,  I was so sorry that I could not be there.  He was so understanding.  We talked a little about what was going on with him both of us knowing it was the end.  We ended the call with “Love you’s” and promising that I would be home to see him at Easter.

The next day, on my way to work I knew that I had to write a poem.  I went back in the office that I had spoken to him last and the ink appeared on the paper.

I have written poems for loved ones before after they have left us.  This was for him – while he was here.  I wanted him to know how I thought of him.

I sent the poem to my Sister and my Mom went to the hospital and read it to him.  She said he reacted just like I had described in the poem.

The next few weeks I seemed to get daily updates.  He was going home.  They were not going to treat him.  My parents were going on a short trip.  The Doctors had given him between a year to two.  Hospice was being called in.  I gave him 2-3 weeks.

We always go to see my family on Good Friday for Easter weekend.  This year we went down there on Thursday.  I was going to visit him on Friday.  I called. My Aunt told me that he wasn’t the same and might not recognize me.

I don’t know what I expected.  My parents had prepared me. However,  they did not even know what I was walking into see.

I got there with my Grandma and Daughter. My Aunt said the nurse had been there in the a.m. and… I don’t even know what she said next. I didn’t wait for her to say I could go in – I went into his room.  He was laying in the bed hooked up to oxygen.  Sleeping.  I set on the bed next to him, holding his hand, talking to him.  I talked to him about everything.  I told him how sorry I was that I didn’t come earlier.  My Aunt said that last time that he responded to something correctly was when she had read the poem to him.  She read it to him twice.  I didn’t want to leave his side.  I cried.  I told him that I loved him.  I told him that I would keep my promise to find his poems and have them all typed up.  I told him it was okay.  He didn’t have to wait until I came back again.  I wasn’t coming back until Memorial Day weekend.  I kissed his hand and his forehead and said goodbye.  He never woke up the hours that we were there.

The next morning we received the phone call.  He was gone.  I  called my Sister to tell her what had happened.  She said, “He waited for you sis”.

I spent that day with my Great Aunt and my Grandmother helping make the arrangements.  In between the planning and crying, their were childhood stories being told that I will cherish my entire life.

His funeral is this Saturday.

I know so many of us with Fibromyalgia  put off doing things until we feel in less pain or are not as tired.  Our time with our loved ones is so short.  I decided 3 years ago that I would not let Fibro and it’s evil sidekicks make me stop living.  Now, I have decided I am not going to allow my living to keep me too busy from slowing down and seeing those who matter.

All I can say is Don’t Wait!

Alone in a Crowd

Originally Posted; Published on 3/6/2013

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Part I

I am in day 3 of a Flare.  It started on Sunday afternoon with my sciatic shooting pain down my right leg followed by my leg deciding to run a mile without me.  I was able to alternate walking and sitting, applied heat and some meds to get through Sunday.

On Monday, when everyone was watching the weather trying to determine whether it was going to hit us or not – I would simply reply – “We are getting some kind of strong weather – trust me”.  My body was already forecasting the weather to come.  The body aches were increasing.  I could feel the myofascial trigger points increasing in both my low back and between my shoulder blades.  I forced myself to go to the pool before work which did help immensely in being able to walk easier.   Note:  I still don’t need a cane or other walking assistance – I just walk like I am 100 years old when I have these days.  I worked a full day with an even fuller night being Mom chauffeur.

On Tuesday a.m. I awoke to the phone ringing telling us there would be no school due to the snow we had received over night.   I would have been calling in sick which I rarely do but the fact that my driveway and roads were not plowed gave me one more reason to stay home.

My body was rebelling the snow outside.  I kept the blinds pulled all day and yet still had a migraine and was wearing dark shades.  I took a long hot bath followed by ice on the back a warm blanket some meds and a NAP.    I woke with hoping to feel better.  There was a short time during the day when pain was lessened.  Then when fixing my family dinner – my body reminded me that it was still there.

It’s Wednesday now,  I woke with the same morning stiffness and aches that I always endure.  But as I continued to get ready for work the pain continued to increase.  Grateful to have only a headache and not a migraine with the rest of my body in high pain, jeans killing me as they touch my thighs.

I dropped our Daughter off at school and then the tears started to come.  I have a 25 minute drive to work which I never stopped crying.  I talked to my husband briefly; when hanging up he said I hope you feel better soon.  He was trying to say something to help but when you have a hysterical pain filled crying woman on the phone what can you say?

Part II – So Alone

As I was driving to work I thought who can I call.  I needed to talk to someone.  I love my Family and Friends but as I thought of each of them I knew they were not what I needed.  What could they do?  I know my Mom would have succeeded in calming me down but all it would have done was to stop the crying.  I needed more than that.  The same thing goes with my friends – I would have most likely calmed myself down until I hung up.

What did I need?  I needed a Fibromite friend.  I needed someone who would 100% know how I was feeling.  We say all the time that unless you have really experienced a Fibro Flare you can’t get it.  How can we make others really understand without going through it.

I think I will print out the following recipe to share with non-fibromites.

recipe cardRecipe for a Fibro Flare

  • Stay up for 3 or 4 days to get the proper feeling of exhaustion
  • Dress in clothing made of rough burlap material
  • Get the flu bug to add fever & body aches
  • Go out and drink way too much – this should give you the migraine, poor balance and queasy stomach
  • Ask someone to take a bat and beat you from head to toe
  • Spend too much time in the sun – giving you the worst sunburn you have ever experienced
  • Use your arms as a pin cushion
  • Add a good dose of memory loss
  • Top it off with someone stabbing you between the shoulder blades once in a while with a good sharp knife
  • Turn on bright spotlights and loud music several times throughout the day
  • Repeat all of the above for at least 3 days

I don’t know if this will help but it’s worth a try.

I continued thinking – how alone this pain makes us feel.

I keep think is that I have family, friends, online support groups and my page where I work so hard to keep a positive outlook for others and yet why do I feel like I am all alone?

How many of us have only have an online support group that we can post our bad days and get some sympathy; and maybe some advice, and really have no-one we can call.

So many times when on some of these sites what happens is we get others who chime in on how bad their day has been too.

Don’t get me wrong I find a big need for these support groups. Heck, I even have my own small one.  I believe in them.  There should be a place where you feel safe to express the pain, anger, etc and hopefully get some positive uplifting support with maybe a few new things to try.

I have a handful of people I have met on these support groups that have become what I would call my Friends.  These are people who I hope in my lifetime to meet and wish we lived in driving distance of each other.  However except for one I have never had any contact with any of these people except for online.

I began to wonder – is there a Hotline for Fibromites?  If not, how hard would it be to start one.  What if I started one? A way for others to have someone to text or call when they are in real need of someone who “has been there” and really can understand where we are coming from when we are in day 3 of a flare.

We use the closed online groups to keep our anonymity; what happens when we open up to others via text, online chat or a real phone conversation?

How can we be surrounded by so many people who care and love us and yet we still feel like we are all alone?sometime we all need a shoulder to cry on

I know that personally when I hit a flare I may start out by voicing it but the longer and stronger they become the more withdrawn I become.

I just want to lock myself up in my room and just be left alone.

This is exactly what I tell people not to do.  I know what I need to do.  I need to make myself go to the pool tomorrow, have my hot baths, keep moving as much as I can.

Tonight; I am going to lie low.  Tomorrow, I will find my inner fight and beat this thing.

I will put this out there to any Fibromites who are reading this – until I figure out the solution to the Fibro hotline – if you are feeling in pain and alone know that I have an ear, a shoulder and sometimes some ideas to share.

We are all Fibro Warriors ~ Living Life