Ok, so surprisingly I have gotten a tremendous amount of positive feedback regarding my blog so I will try to keep up to date with it.  Like I said, I do not want anyone feeling sorry for me because I truly am thankful my situation isn’t worse, and I truly am thankful that God has blessed me with the life I am living. The challenges I have faced have given me strength, determination and courage to keep pushing for answers, not to mention, I truly found the man that God intended me to be with! Without Tim, I truly believe that I would have lost this battle years ago.

I want to give people a true sense of what it’s like dealing with a rare disease that so many know nothing about.  I have had several family members and friends call me up crying that they were sorry they have not been here for me or they were sorry that they truly did not understand the severity of my disease.  They have also called saying my blog is hard to read because it makes my situation “real” and “raw” which I can definitely relate to, bc if I don’t talk about it, the truth is I am fine then!!

First off, don’t be sorry!  I know I use my sense of humor to deal with my sickness which I also know tends to divert people from the severity of my disease. The fact is, yes, this disease is horrible and sucks the life out of me on days, but I don’t want attention because people “feel sorry” for me.  If anything, I want people to say “wow, look at the will this girl has, and the “faith this girl has”.  I want people to see me for the obstacles I have overcome!

So here is an honest night of what living with my disease is like.  Remember that flu bug everybody is so concerned about?  Well, the last week I have been off and on with just not feeling right, however unlike “normal” people, I can’t fight the illness off that fast. For the last several days I am waking up in the middle of the night with EXTREME chest pressure and headaches, only to be accompanied by the never ending cough.  This cough leads me to getting, what I feel like is, “deathly sick”.  I am up all night coughing (yes, my FM friends, with blood but I will spare you details), getting sick and the head pressure is so intense that I just dread the thought of turning my head to reposition myself.

When I first met Tim he did not understand why I would avoid anybody who was sick, people are sick everywhere so what’s the big deal right?! HOWEVER, with my crappy immune system, I swear I can get sick just from looking at a person who is sick. Needless to say our daughter has had influenza A within the past couple of weeks and then our son had a double ear infection with a nasty cold.  While I know I should be taking precautions, and I do, I am not going to let this disease keep me from being a mom…..therefore when my kids are sick, I WILL take care of them, and 99% of the time I get sick regardless of how much I Lysol and wash my hands.

So here I am stuck, my body is fighting extreme fatigue yet laying down makes me feel worse so I can’t sleep. Tim leaves me to go do chores, with that look of doubt in his eyes, wondering if he really should be going. Nights are the times when I find myself reading my devotional, working, or writing in my journal…which is now my blog. These are the nights that I have to be honest and say that I hate this disease.  I mean, you have all had the lingering cough after a sickness that won’t go away, but that cough is a guarantee for me regardless if I’m sick or not, and the days I am sick it does make me question if fighting this disease is really worth it, and trust me I ask over and over for forgiveness of me thinking this way, but the thought still manages to creep in to my mind.

The funny thing about having faith and believing in God though, is that He puts whoever I need right in front of me when I need it the most.  Tonight was a bad night for me with getting sick from the extreme coughing and when I really started to get frustrated, Asher came over and flashed me that smile of his, one kind of like daddy, and hugged me and held on to me, not wanting to let go. This is when I again realized that yes, as horrible and miserable as I might feel, my kids…and my husband are worth me fighting this nasty disease.

SO, the sickness, the cough, the chest pressure the head pressure… this is a bad night but tomorrow is always a new day, and a new beginning. Don’t let my sense of humor fool you, but let it bring awareness to this monster I am fighting inside. “Just because I’m smiling doesn’t mean I’m happy, it means I’m strong “. My mom always said God blessed me with a sense of humor to get through the trials in life and I am thankful for that because without laughter all I would do is cry, and I CHOOSE laughter.

Again, I am not sure where God is leading me with all of this but I have had tremendous amounts of emails, encouragement, support and” thank you”s for sharing my blog so I will try to continue with it.  This is so completely out of my comfort zone but again, I have felt for several months that God was tugging at my heart to share my story so I am putting this out here for you all to see.  A lot of times I find myself thinking “who really cares” and “why should I do this”, but the overwhelming emails and responses have shown me that I am a voice for others, so I will continue on.

This week will have a lot of appointments once again to hopefully determine answers for me. It’s funny how I pray for something to show up on the test results…simply so doctors believe how sick I am.  It’s actually bitter sweet because I pray for the tests to show something but then the doctors don’t know what to do with me when I do get the bad test results back.  I just keep trying to remember that God is good and regardless of what I find out, in the long run, I will be free of pain and suffering so I can’t really lose no matter what the doctors say right? 🙂 This is the only hope that we can hang on to!

Tuesday is my MRA and Wednesday I meet with my cardiologist so we shall see what the week holds soon enough! Please keep me in your prayers and I have confidence that this will be a week of answers!!