Sunday, November 24, 2013

The calm after the storm

I just got back from a vacation with my lovely wife celebrating our 20th anniversary. We went on a Caribbean cruise for a week and the trip was nothing short of amazing. We swam with dolphins, being pushed along on a buggy board and pulled along by holding their fins. We ATV’ed through the rain forests of Roatan and then swam with a massive turtle who let us play and ever ride her. (Amazingly gentle creatures) We walked among the ruins of Tulum of the ancient Mayans and played in the glass like ocean waters so calm that you could float in them like swimming pools and sand so soft it felt like walking on powdered sugar. We cursed on a ship so large that it had 13 floors and is longer than three football fields.

I walked the stairs, played basketball, strolled the decks and watched flying fish sail away from the bow of the ship for astonishingly long distances. I walked the ruins, the beaches and the cities. I watched the shows, laughed at the jokes and soaked in the hot tubs. I ATV’ed, danced, and even did a charity walkathon for the make a wish foundation, and in all that time I never hurt. I didn’t even think of Sarcoidosis… other taking my pills morning and night, I never thought of it.

I started this blog not knowing what to expect. I didn’t know if I would suffer with Sarcoidosis all of my life, or if it would cripple my ankles, or if I would be forever fat because of the medicine. And through a lot of work, and finding the RIGHT doctors and the RIGHT medicine I have now entered a stage where Sarcoidosis doesn’t really affect my daily life. I have even lost a significant amount of weight!

If I knew back then where I would be now I would have had much more courage. I still hope to come off the medication all together in time, and know that I can, but for now… Life is wonderful again.

If you are suffering from Sarcoidosis, you hang in there. Don’t give up. Fight and push and keep looking for the answer. Work at finding a Doctor who will listen to you. If a medicine isn’t helping you progress, tell them and work to find better ones for you. Be willing to go through the roller-coaster of switching drugs and doses. Never give up, never stop fighting! Partner with your doctors, they have the knowledge and you have the experience with your body. Together you can figure it out!
I don’t that this will work for you, but I wanted to list what has been very effective for me. I am currently taking:

Imuran (Azathioprine) 100 mg twice per day (This is doing the heavy lifting)

Medrol (Methylprednisolone) 4mg twice per day (Much, Much fewer side effects than prednisone for me)

Prilosec (Omeprazole) 20mg twice per day (For heartburn that the pills can cause)

What an amazing difference this has been for me. You should know that I slowly stepped down on my drugs over a large amount of time. I plan to continue to do so after the first of the year. I want to reach the minimum dose possible or, hopefully, none at all. (Remission)

What a journey this has been and it isn’t over yet. I expect there may be more ups and downs in the future, but I am constantly amazed at how far I have come and how much better my daily life is.


Ps. My sister is doing VERY well also.


Foster Mom - R said...

Great to read! It's nice when the Sarcoidosis lets you live!

Mike said...

Thank you "Foster Mom"

I only hope most people who suffer with Sarcoidosis can get to this point, and I hope quicker than I did.