I have been wanting to find some way to bring awareness to this horrific rare disease that I continue to battle and one way I thought that might be possible is if I start a blog.  My goal is to bring to light the severity of Fibrosing Mediastinitis, what it’s like living with such a rare disease as well as to show you through my journey, the struggles we go through just for doctors to listen to us and take us serious, all while keeping it uplifting and encouraging to others.  Yesterday, however, is one of those days where it is hard for me to find a positive in the events that had occurred over the last 12 hours.

It started with a follow-up appointment for my diabetes, nothing out of the ordinary, just a regular checkup.  I should have known when a peanut butter cup fell out of my purse in front of the diabetic nurse, it would be all downhill from that point on 🙂
While there, I decided to touch base with my endocrinologist regarding my leg to confirm that she did not feel it was any type of neuropathy due to my diabetes. She again stated that she still felt my leg pain was due to vascular concerns.
As she was listening to my heartbeat she also noticed my fingernails and came to the conclusion that my fingernails were another indicator that I do in deed have some sort of vascular issues going on. I fought back the tears wondering why my cardiologist would not acknowledge this.

The highlight of my appointment however, and I say this sarcastically, was when she went to review my normal blood work that I have drawn every couple of months for my diabetes, she found that the hospital had sent her a wrong report.  She went on to say that it was a test for congestive heart failure and my heart sank because I knew the results were meant for Iowa City.  This last week has been a nightmare trying to get my MRA, a test to look at the veins and arteries in my leg to determine any blockage,  as well as some other  tests ordered by my most recent orthopedic appointment.

I had planned to do all of the testing at Waverly hospital only for them to say they were not equipt to do the MRA so I was sent to Covenant Hospital which took almost a full week for the order to get switched due to so much unnecessary confusion.  The Waverly hospital had also told me the doctor had ordered more lab work and tests but once all of the orders got switched to Covenant, the only order they received was the MRA.

Regardless, I told her that must have been one of the lab orders Iowa City had requested.  I was given the report and we briefly went over the results as she did not want to say too much given this is not her specialty.  I looked on the sheet to see that my results were marked with an H indicating that my levels were higher and slightly over the normal range.

Trying to keep my composure, I was able to make it out to the car, buckle Asher in his seatbelt and there I sat in the driver’s seat with my head down finding myself to be crying once again.  The last several months have just been building up and I am getting so tired.  Just find the answers and help me, why does this have to be so complicated?!

I went home to email my orthopedic doctor regarding my labs however they were quick to respond that they did not order the test but pointed out that my pulmonologist had ordered it. This led me to contact yet another doctor trying to get everything all straightened out.  I had already done this lab work for congestive heart failure yet these results were even higher this time.  What are these doctors not telling me?

Anyway, did you follow all of that?  Confusing right???  This is just another day of dealing with too many doctors and a rare disease that so few doctors know so little about.  The simplest tests can take weeks to arrange and are usually only ordered after I have went in a circle of doctors passing me from one to the other and me not taking “no explanation” for my pain.  I want answers! While the orthopedic doctor told me I was “out of his range”, he is at least ordering tests to try and find some of those answers. Yet here I sit playing the waiting game again and I can’t help but get nervous when the waiting game is in regard to the condition of my heart this time.

As if that wasn’t enough for the day, my phone rang and it was Covenant hospital explaining that the MRA that was scheduled for Thursday, is such a rare test that they wanted to push my appointment back to February 3rd as this is when the radiologist who specializes in this testing would be in. This would allow him to be there during the procedure to make sure he is getting a good look at what he needs to see.

Ok, I like to think I handle myself pretty well overall when being in some of the situations I’ve been in, but sometimes enough is enough.  I did get a little snippy with her and said that was fine but followed up by saying I have been dealing with this extreme leg pain for over 5 months, and yes, I actually said “if I lose a leg I’m going to be pretty pissed off”. I’m to the point now where I’m embarrassed and can laugh about what I said, and I did apologize which she of course simply replied that she “understands my frustration”….another typical line I hear that only indicates they have no answers for me. I was able to refrain from saying anything more and simply thanked her for the call.

So that was my morning in a nutshell, fun right?!  As of now my MRA is scheduled for next Tuesday then I will see my heart doctor on Wednesday and go from there.

I also need to acknowledge that we lost yet another member from my Fibrosing Mediastinitis group the other night.  Gary was one who also had welcomed me when I joined the group and his posts were always so inspiring because no matter how bad of a day he was having, he always praised God for the life that he was living…and like Dave, Gary always made sure to encourage and let us know that he was holding us up in prayer.

When I joined the FM group years ago, my symptoms were very mild however Dave, Gary, Rick, Tricia and Gina all have a special place in my heart as they have all been around since I was diagnosed. I know they have no idea what an influence they have had on me because I was quiet on the site and did not post often.  I did however read everything everyone wrote and I laughed, I cried, I was inspired by the determination. I have gotten to know a lot of wonderful people through this group who impact my fight more than they will ever know.

With the loss of both Gary and Dave, I find the negative thoughts creeping back in to my mind when I was first diagnosed with a ten year prognosis…and I am going on 13 years. I have always considered Dave and Gary to be some of the “go to” men because they always had answers either from research or personal experience.  And now we have lost two of our dearest within 10 days apart causing the reality of this disease to be thrown right back in my face.

This disease is a silent killer and even worse, all of us look normal and healthy so we are put in a position to force doctors to listen to us and to help us.  Even now at the age of, well, now that I’m older 🙂 doctors still don’t consider heart failure or strokes to be even a possibility from just looking at me because I look healthy, like a “runner” which I’ve been referred to so often, which is far from the truth, haha.

Yesterday was one of those days. And as hard as it is, I wiped away my tears and reminded myself that God is good and He is going to get me through this.

Mom pointed out today that Gary had the same quote on his Facebook wall that is similar to what I have hanging in my kitchen “When life sends you storms learn how to dance in the rain” I sure am thankful that I love to dance 🙂 I was blessed to be able to spend another day playing with my kids, okay we are all sick but I had a day of cuddling and loving on my kids, I guess the day wasn’t so bad after all.

Please keep Gary’s family in your prayers as they deal with the loss of such a great man  but like Dave, hopefully Gary’s family can also find comfort knowing how many hearts he touched and how he is with our amazing God and no longer suffering.