I have been trying to research fibrosing mediastinitis a little more due to my new progression. Again, not much new information out there but I continue to go over all that I have read and I continue to add to my list of questions!

It’s kind of funny how others can see me worse off than I think that I am. While talking to the doctor last week, he had asked how long I had been experiencing these heightened symptoms. I explained it’s been awhile and maybe a few months…but Tim jumped right in and said I’ve had a bad year!!! Really? I look that sick to my husband??? But yeah, Tim’s probably right and I guess I don’t hide it as well as I thought I did!

So yes, I have six stents in my SVC due to SVC syndrome and then since 2013 I have had a blood clot in my chest and been diagnosed with several new things…pulmonary arterial hypertension (another rare disease caused by FM, my first rare disease), resulting in 2 stents in my right pulmonary artery, a blocked airway resulting in breathing treatments and inhalers, a moderately blocked coronary artery and heart disease which is undetermined at this time how we will treat that, along with lower oxygen levels…busy two years but hey, I think that’s it😉😬

But…I also have one good lung and that makes a big difference!!! If you read this article, which is quite lengthy and my fm is caused by histoplasmosis, at the end you will see that people with this disease can live for decades with just one lung. Of course from my experience, it’s definitely not easy…but I’m doing it! And I will continue to do it!

While this recent progression can sound very devastating, I have no intentions of this disease taking my life just yet. Plus, how would Tim figure out that instead of asking me if we have milk, he can just go to the fridge and look? And dont get me started on the kids and bedtime!😳😜

Anyway, this kind of news has been going on now for almost 14 years and trust me…I’ve been in this spot several times before and pretty soon you will get bored with my blogs and be like “seriously? she’s not dead yet?” Haha. Joking!! To me this is just another hiccup, right Miss?😍

I am so blessed to have a wonderful circle of support…friends, family and people I don’t even know who are encouraging me and praying with me! And while I have my bad days physically and emotionally, I pull out of it and push forward with a confident and positive attitude that I will find help. My amazing team of doctors are also fighting this with me and I know they are doing all they can to get me figured out!

On the flip side, regardless of my health, my situation, none of us know when our time will come to an end on this earth and unfortunately so many of us live not really paying attention to the many blessings we truly are surrounded by.

Because of this disease I have been faced with death, it’s been thrust in my face more times than I want to count and because of that, I am fortunate enough to recognize the beauty in every day! 

Like this picture…sure the sky and the trees are pretty…but the most beautiful thing about it to me…the big footprints and little footprints from all four kids tromping along next to me and Tim. 

I am learning to appreciate every moment… 

  

 No matter how many times they make me want to pull my hair out😉  

Sure I cry and get sad at times but just because I have an ongoing chronic illness doesn’t mean I should dwell on it. I am always in awe of how good God is and the peace that He gives me throughout this very long valley!    

 
I am fortunate that I have always been the sick one in my family because I think it’s more difficult at times for the loved ones to see their own loved ones going through such trials…so I just pray that all of my family and friends can find that same peace I have found as you continue to walk this journey with me. 

Life stinks sometimes…actually a lot of times and there are extremely difficult days but faith and attitude and family and humor are my keys to survival… I really am okay…the majority of the time☺️…so you should be okay for me too😉😭

Here’s the article about what fibrosing mediastinitis actually is and thankfully more progress is being made in regard to treatments!

http://rarediseases.org/rare-diseases/fibrosing-mediastinitis/