My First Appointment at Cleveland Clinic

My First Appointment at Cleveland Clinic

Tomorrow I will be traveling to Cleveland Clinic to see the Sarcoidosis Specialist. I am a bit nervous as I will not have anyone go with me. Usually when I have big appointments like this I have a friend or relative with me. However, I will get through it fine. My first appointment is at 7:05 a.m. OMG! That is sooooo early! I guess I will be going to bed early the night before. While I am in Cleveland I hope to see some of the sites and maybe see a bit of Lake Erie! I am taking my bathing suit just in case.

Well I made it to Cleveland in grand fashion. My tire decided to break down and had to get it repaired. As I was going to repair shop I backed into a car who had pulled up in back of me. Just so you know they were not there when I looked in all directions. However, it is still my fault. That blows. Well anyway my trip was a bittersweet one. Found out I have an enlarged heart, degenerative thoracic spine, continue to struggle with Lymphadenopathy. I still have Sarcoidosis in my skin, but it is in remission in my lungs. That is the first good news I have heard in 22 years of dealing with this condition. I would have to say that it has torn my body up over the years! With that being said I continue to move forward and educate myself on whatever it is I want to learn.

I have decided to start enjoying my life much more. I hope you do too! Yesterday I downloaded two books on gluten-free and Paleo eating. I think I will take a peek and see if anything peaks my curiosity.  

Grueling Year

Grueling Year

Last year has been the roughest for me. I had both my secondary achilles repaired in both ankles. For the 1st repair I took only 2 weeks off and for the 2nd it was a long grueling 6 weeks (boredom). Anyhow, I got through both with some ease until it was time for the physical therapy. They are now doing what it called scraping and it is the most painful procedure I ever had to go through. Just thinking about it makes my skin crawl. Last week the therapist is suggesting therapy should now be two times a week; one for the scraping and the other for strengthening the achilles itself. Not looking forward to that at all. Other than this, seems like never ending procedure, all is well! Well at least I thought all was well. Fast forward to May 2017.

Had my lovely vacation schedule for the end of May. Taking this much needed road trip in honor of my brother who passed away 2 years ago. He was mentioned in previous posts. This trip I took is my first long trip without any human being or my lovely, now very old dog, Barak. As soon as work was over I was right on the highway for the next 7 hours. That was fine until I got halfway to my first destination when I found out I did not renew my truck tags. Man was I scared. When I arrived to my first stop, I got on the computer, paid for my tags, and the next morning went to FEDex and printed off my information to carry around with me. It felt a little better to have that done although my sticker was still out-of-date.

After getting that sticker I was back on the highway heading to my second destination. I was not even halfway and I began to feel ill, so I hopped off the highway, signed myself into the Holiday Inn. By this time I was in Atlanta. I called my niece to let her know what was going on with me. I met up with her the next day and she gave me something to relieve my swelling. Well after that I headed to my second destination. By the time I got to the designated place I was literally ill and a bit dismayed. I knew I would be spending the rest of the day in bed. The next morning we were heading to Florida. Still not feeling well I tried to enjoy myself as best as possible. We went home late evening and to bed I went. The next day we were going to the beach, however, that did not happen, we slept in. When I say slept in it was six in the evening. When Monday rolled around I called the Sarc specialist in Indianapolis. They tried to schedule me some appointments, but every time I had something more pressing to do. Like keep another doctor appointment made months ago. The rest of my vacation went well.

On the way back home I promised my niece would stop and stay the night with her. I met her at her school. I told her I would be her students patient for the time I would be there. It was funny and fun to have them check my vitals. But the one thing that was not funny was my blood pressure, It was absolutely high every time someone checked it. My niece could not believe it, so she took my pressure, she said yep the students were correct. UGH! Fast forward to now!

I am doing fine now and still in physical therapy. Have my Cleveland Clinic appointment on Thursday, August 10, 2016.

The Journey of the Purple Snowflake 2

The Journey of the Purple Snowflake

The journey to becoming Purple Snowflake is long and arduous!

It takes you through many parts of the body, mind, and soul

It cuts, slices, ravages

It destroys, it even kills

The journey to becoming

Why are we on this journey?

No one will ever know, not even us

We hit many roads of lumps, bumps, and pains unknowingly

We see many people who tell us what is wrong

They say you have a mysterious disease

We get looked at as if we are plagued – we are

The mysterious disease is called Sarcoidosis

We slide into the abyss of pulmonologist, dermatologist, neurologist, and cardiologist

But do they really know?

We get thrown into the world of medications

Remicade, Methotrexate, Plaquenil, Prednisone

But do they help?

Can there be a cure for this devastating journey….

Talking, walking, working, and waiting endlessly

Raising awareness

For that glorious cure

We wear purple to represent the regal fight against Sarcoidosis

The symbol…… a snowflake

Individuality – no one is the same – we are different

Awaiting for this mysterious disease to disseminate

We are the Purple Snowflakes….. Sarc Warriors

Which is our journey of becoming

We continue to grow limp and fatigue on a daily basis

Waiting for this journey to end!

In the meantime we will stand tall with all Sarc Warriors

Alongside the scientists, doctors, and….

The researchers who are working towards a magical cure

We reach out to others with this mysterious disease

We cry, we share, we support, we teach, we love

We wait, we pray

We continue to fight the fight

Sarcoidosis is our journey to becoming

A Purple Snowflake…..

Published by Regina Kay Gordon

Founder of Sarcoidosis Fort Wayne, Support Group

Updated 6/16/2017