Instead of what does a fox say….get it? Like Tim says, at least I crack myself up!! Haha

Anyway, it was pointed out to me, of course by Tim, that I seem bitter about wearing this heart monitor…and yes, yes I am. I have had an insulin pump attached to me for years so I really don’t know why I’m struggling so much with this thing.

Maybe it’s the fact that it constantly seems to be beeping, implying that my heart is doing something that needs further looking in to. Maybe it’s the fact that when the nurse hooked me up she said one battery might last the entire month if there is low activity, yet I just put a third battery in after only 10 days. 

It beeps in the morning, it beeps throughout the day and it beeps in the middle of the night, which makes night time a lot worse. First off, the monitor has a constant flashing green light to indicate it’s recording. When my heart does something funky, the monitor beeps and then flashes a fast blue light to show that my results are being transferred to the phone, which is a calling system where my report is sent and reviewed. Once transmitted, the monitor goes back to a slow consistent green flashing light.

 Luckily, my symptoms have not been severe enough that I have had a call from them encouraging me to go to the hospital….but, I can’t help but find myself in the position that I so desperately hate being in…hoping, praying, that my results of this test will show something wrong, just so doctors have answers, proof that I am sick, so they can “fix” me, again. But 99% of the time, this is not the case. Maybe I am bitter with the fact that my results will show something, but whatever it is, even though it is something…it really won’t be anything because “it’s to be expected with FM”, something I just have to live with. 

I have pads stuck to my chest with wires dangling which then causes me to pull on them or get twisted up with every attempt I make to get comfortable at night. I have my insulin pump that brings on the same frustration yet now I have to make sure my tubing from my pump doesn’t get entangled with the wire from my heart monitor. Even better, how attractive do I feel when I have to ask my husband to help me reapply the electro pads to my ribs…who says romance dies after a few years of marriage?! 😉

I will admit that the last couple of weeks have been hard to push away the bitterness, the anger, the disappointment with no answers….and the fear with no answers. I have to somehow come to terms with the fact that I am going to have bad days. When first diagnosed with this disease, I struggled with my SVC symptoms but now with the heart and lung symptoms, this is a whole new ball game. I am really having a tough time accepting the limitations these new symptoms are putting on me. 

 Today I worked for my job and then organized Leah’s room but that being so minimal, still resulted in me having to lay down to rest, only to wake up 2 hours later! These are the days that I will solely have to rely on God to get me through, simply because I am not strong enough to overcome the really dark days of this disease on my own. These are the days when I pray more and also try to listen for what God has to say.

I still have so many people calling or messaging me to say they are sorry for not really knowing just how bad my situation is. I try to comfort them by saying I really was doing okay at the time we were in contact, but my FM has progressed. I never like to burden others with my problems. I do like sharing my story but I don’t want it to change the way people look at me, or act around me, but I know it does change things.

In all honesty, I have been dealing with all of this junk, just different symptoms, for so long that to me, it is no big deal. Yes, my situation can be life threatening and very serious, but to me it’s just another day, it’s a part of my “norm”. This, I know is hard for people to grasp, and actually this probably is the thing that upsets Tim the most is when I blow my situation off but I truly am thankful my situation isn’t worse. I keep telling myself God has a reason for all of the tremendous pain in our lives…

So tonight will most likely be another night of little sleep. I tend to sleep two or three hours at a time before I wake up and have to regroup and reposition, try to cover that dang flashing light up, maybe check Facebook and go back to sleep. Really though, what did I do before Facebook?! 

Also, for a final note, the Waterloo courier will be coming to visit with me tomorrow in regard to living with a rare disease. My mother in law was kind enough to send out a letter to the local newspapers in order to help share my story for rare disease day. While that day has come and gone, she still got someone’s attention so it worked! My whole reason is to bring awareness to Fibrosing Mediastinitis because more people are getting diagnosed with this disease! Please pray that this article will help to bring awareness in order to start research, which can lead to better treatments and cures for the next person to be diagnosed. 

I do not like attention on myself because in all reality, I am actually one of the few fortunate ones with FM as it only affects the right side of my heart, my SVC and only my right lung. That tells you how bad this disease can really get if my situation is considered to be fortunate. Stents have helped me but so many of my FM family, no treatments have been successful for them. 

On the other hand, new clinical studies are starting to show positive results in stopping or at least slowing down the growth of these masses so we need to keep pushing for research and for answers!  I guess if I need to step out of my comfort zone in order to hopefully help someone else down the road, and to bring awareness to this illness, then I guess it’s time for me to gear up and do what I need to do!

I really think God is trying to tell me something if I just pay close attention. Look at the picture of notes Skye took for me last week at church since I wasn’t able to be there due to a bad day…How Do We Stand Strong and Win the Battle? 

Sweet dreams 😉