A better start to the week 

A bit of good news to start out the week! I talked to my SVC doctors and the scans I did in December for my heart and lung were also able to show that my stents in my SVC look to be open…a little compressed but overall nothing to be too concerned about! This means I don’t have to go to Iowa City tomorrow!! Yeyyy! 

Even better, I don’t have to get my SVC checked until the fall AND instead of doing the venogram and prep for angioplasty which includes anywhere from one to three IVs…the interventional radiologist is going to do this same scan I did in December so that it will be a lot less invasive! This is a win for me😊 

It has been a rough weekend, to say the least, for Tim and me as we continue to let what the doctor told us on Friday sink in. It’s now a matter of wait and see what steps we will need to take in regard to treating my new issues. While we tried to use our sense of humor to deal with it over the weekend…the jokes usually resulted in me shedding tears and Tim was physically sick as well. 

My heart, my lung and my airway…all being affected by this disease a lot faster than we ever expected. I feel like I’m newly diagnosed with such nasty symptoms. And the doctors even seem to be at a loss with what to do with me as I think the fast progression of this disease has even taken them off guard.

I tried reading some of my blogs and geez, my upbeat attitude…I wanted to punch myself! Haha! I mean, this was a weekend where I didn’t want to be encouraged that things will be okay. I wanted to cry and be angry without feeling guilty for my emotions…without trying to be positive and brave in the midst of such discouraging news. 

And while Tim is an amazing support, this weekend he wasn’t! Haha…and that’s okay!! 

When he walked in on me crying he simply turned around and left the room. When I would have moments of panic and confirm with Tim by saying “arteries to my heart blocked, lung has collapsed more and my airway is blocked…to the point I might need oxygen…that’s kind of serious stuff…” he replied with “yep, don’t know what to tell ya.” 

It was then I realized how much this was weighing on him so I let him be. And of course I’m not mad by his reactions because this affects him just as much as me…just in different ways! It is killing him knowing he can’t do anything to fix this…to make me better. 

He has a right to be mad or silent and he has a right to distance himself from me…from all of my health crap! He should have all the time he needs to deal with this too! 

But, while there was a lot of fear and frustration and tears over the weekend, Tim also admitted he had to ignore everything right now. He said he was sorry but he didn’t want to talk about anything…and again I was fine with that. Because he was being honest with his feelings! 

So instead, we cuddled up on the couch every night to watch movies without saying much…living in the peace of perfection in those moments…well, until my cough set in…but then I was good after that😬   

 And then Tim was preparing things at work today so that he could be with me at my appointment tomorrow. So, while he needs time to ignore the problem when first hit with it head on…he also has no intention of missing my appointments…he is able to put his feelings aside when he knows I need him the most…he is always there for me and I cannot begin to express the gratitude for all of his support and hard work he does to keep our family going!  I think I’m doing pretty well now and can talk to people without crying! 😜 We’ve been in this spot before and we know what is to be expected with this disease….the unexpected.

My illness will always be ongoing…I will never get better, I will never be cured or to the point where I don’t have to have countless trips to Iowa City. That is not me giving up, it’s just the reality…BUT, I can maintain at the health I am in…and that has to be my focus! There is progress being made and I believe there will be a cure for fm very soon and while the new treatments can’t reverse my symptoms, it will be able to prevent more growth so I need to stay as healthy as I can! 

Plus the trips allow date days for my husband and me! We have to make the most of it right?! And I am glad to say that for the most part…Tim and I always have something to laugh about with every trip and every round of bad news!

So this is where my positive annoying attitude comes in! I think it’s okay that I had a bad weekend…but now I’m determined to fight for answers…for something to help me! I have to keep my attitude positive and when I begin to feel like I did over the weekend…actually that’s when I need to be encouraged the most…to hear what I don’t want to hear, so thank you to all who sent messages because each and every one of them made me smile!! The support is overwhelming and it’s a wonderful feeling knowing that we are not in this alone!

I need to keep my focus on God because without that focus, I would get lost in the sorrow and I would get stuck! A bad weekend would turn in to a bad week, a bad month, a bad year. I post verses and sayings on my FB page and in my blog because I need that constant reminder that God is with me…to be surrounded in His word as a comfort to me…  

 This is just another blessing in disguise and I know God will get us through it…His way and His time!

I am extremely thankful to have Tim by my side and if anything…Mayo Clinic might be a nice change of scenery for us if that is where God intends for me to be😉

No appointments now until monday!! Enjoy your week everyone and thank you so much for the much needed prayers! 

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