Happy FSGS Anniversay

The Chinese have their New Year. The Greeks & Romans had their calendars. Even the Mayans, now so do we.  It’s our one year FSGS anniversary.  Last year, March 28th, Terry and I found out that I had an incurable, degenerative Chronic Kidney Disease called Focal Segmental Glomuleroschlerosis or FSGS.  Yeah, we didn’t know what the hell it was either… we learn fast though.

It’s hard to believe that it has been a year already. I wish I could say that I have spent the last year in a drug induced fog, but that would be a lie. One could only hope….

I know this is my blog, but it wouldn’t be fair if I only gave you my thoughts all the time, so I want to provide you with some other perspectives. Terry is not only my husband and my caregiver, but my confidant and the other half of my soul, so I thought I’d give you his perspective on this disease.

Q= Question               T= Terry                E=Eve                   

Q.  What has been the biggest surprise or lesson you have learned in the last year?

T.  I was suprised to learn how much sodium is in the food we eat. I didn’t expect that. Finding low sodium foods is hard.

E.  Remission doesn’t mean remission for me. I’ll never be able to go back to eating salt. I’ll always have to take medications. This disease doesn’t just go away.

Q.  What would you like to share with people who are faced with this disease or any disease for that matter?

T.  I got the same diagnosis. We’re in this together. We share this disease. We’re on the same diet. When she’s in pain and up all night, so am I.  I go to all of the doctor’s appointments. I sit in the hospital with her.

E.  It is so important to have a good support system, a group of people who provide moral, emotional and sometimes physical support to you during the good and bad days of this disease. Just make sure you understand how important they are to you and don’t take them for granted.

Q.  What was the worst moment?

T.  The pain. I wasn’t prepared for the pain. Then knowing I couldn’t do anything to help.

E.  The moment of diagnosis. The terror of facing medications, pain, dialysis and transplantation.  The fear of living the rest of my life with this disease and knowing that the life I thought was perfect was now changed forever.

Q. If you could change one thing, what would it be and why?

T. If I couldn’t wish Eve healthy again, then I’d like for her to be able to quit work and not have to worry about money and working all the time.

E. I wouldn’t change a thing. As much as I hate my situation, the prospect of the future, I can’t help but feel that God has a purpose for me and I need to serve Him. I just feel guilty that Terry has to suffer too.

Q.  What has been the one thing that has changed in the last year, as far as the relationship is concerned?

T. I try to find ways that will make things easier on Eve so she doesn’t have to be in pain. I’ve tried to take on additional roles and duties.

E.  I have become a more dependent person. I need Terry and I’ve never needed anyone. I don’t like to be separated from him. He’s my “electric blanket,” my security.

At the end of the Q & A session, I asked Terry,  ”is there was anything I left out, any questions I should have asked or anything pertinent that people should know?”  He said he doesn’t believe that people understand how much pain, fatigue and discomfort that goes along with this disease.  If it’s not joint pain, indigestion, or abdominal cramps, then it’s the side effects to the medications.

If I had to say one thing, I’d have to say,”This disease doesn’t define who I am, it only defines certain limitations. I’m not as physical as I used to be. I’m not as active. What this disease has taken from me, it replaced with something just as important. It’s taken my active and adventurous spirit and turned it into a more sedate but creative soul.”

Happy Anniversary Everyone!!