This Dreadful Disease!

This Dreadful Disease!

Since I have been off the Methotrexate my pain has increased. Went to doctor today and she has put me on a low dose of Tramadol to help ease the pain. Sarcoidosis has truly ravaged my body. To prevent my heart from getting bigger I will now be taking lisinopril. Which is another type of blood pressure medication. I talked with my doctor today and she stated that I would not be in this condition if I did not have Sarcoidosis. The disease is truly dreadful! I HATE IT! #sarcoidosisawareness #findacure #support

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

My Brother and Me

My Brother and Me! 

My brother was my anchor! We talked on a daily basis. We both have autoimmune diseases. His is called polymyositis. You are wondering what this disease does to a person. It is a chronic inflammatory disease that attacks the muscles which is a very rare form of rheumatoid arthritis. This disease is mean and it does a body no good. My brother had a hard time swallowing as the disease weakened his muscles in his neck. He would always choke on his food. He had a hard time picking up items, because his hands trembled all the time. His lungs were in very bad shape due to smoking most of his life and was in part had to do a lot of how the disease attached his lungs. His lunged became very weak that he was going to be put on a lung transplant list. My brother eventually had to be put on oxygen to help him get around. His name never made it to the list because he wound up having cardiomyopathy. Which is fluid on the heart. His first attack was when he and I had returned from a visit with my daughter in Tennessee. We were going to pick up my dog. When he passed away he had a heart attack. My mom found him sitting up in bed with his oxygen tubes on. My brother and I shared some commonality with our diseases. Both diseases are rare autoimmune diseases and we also took the exact kinds of medicines. We would borrow meds from each other when we were out. We always wondered if the diseases we carry are hereditary. Somehow I believe we will never know that type of information. My brother lived with his disease for four (4) years and myself twenty-one (21) years. I am sure his condition when found was already in its latter stage. I am pretty sure I am in stage 2. Anything beyond stage 2 is really not a good sign. I am in several online support chat through Facebook. I read how many people are dying from this disease and how some of them are just feeling down on themselves. Well I don’t live like that. I may have my days, just as my bother did, but we don’t let it get us down. If anything we educate and show how strong we are to beat these diseases. I often talk about support it is because it is important to have that support backing you and this is what makes life much better for you. Especially because they understand and want to know about the condition itself. My family can now tell when I am not doing well. But I try not to tell them because I want them to worry about their self. I know it sound like I am rambling. But I am writing how I am feeling and what is always at the forefront of my thinking. My brother lived the life he wanted to live even after he found out he was dying. He said he was going to buy a BMW and he did that. He looked forward to working on that vehicle as he was restoring it. The BMW he brought was a 1992 model with a built in phone in the console. He said when he drove that car they are one of each other. The last trip my brother was about three years ago on a Labor day. That was his time to travel because his birthday almost always fell on that day. He would go to Tennessee to see a younger brother and stay at brother’s lake house. That is a beautiful place to go. My younger brother lived in the hills of Tennessee and my brother said he loved going around and winding down those roads. He says it makes him feel wonderful. That is how I feel about my SUV that I drive. Her name is QueenieBee! I am going to take the trip my brother could not make. I will travel to Tennessee, then to Atlanta, then to Jessup, Ga, and maybe Jacksonville, Fl. We have relatives in each of those places. I will for the first time in my life drive that far on the highways by myself. I know I will be fine because I have my brother watching over me. Just before he died he showed me how to night drive. I love him and miss him more than anyone would or could know.