Dr. Thomas emailed me back in regard to all of the questions I had for my upcoming procedure. He stated I had a lot of good questions but he didn’t want to answer them via email. We scheduled to meet with him this week and then we can review things face to face. He also stated that he would be able to show us my scans and explain exactly what he wants to do. 

I’m not sure if having more details will make doing this procedure easier on me but at least Tim will feel better knowing what’s going on. I attached an article on bronchoscopy which sounds bad enough so  it’s probably better if I don’t know all the risks involved with actually stenting or trying to open the airways!

http://www.healthline.com/health/bronchoscopy#Recovery6

It was an extremely difficult weekend for me. My cough came back very sudden…and hard! I am coughing up a lot of junk and getting sick with just about every coughing attack. Needless to say, I am using my inhaler and nebulizer again. 

The only good thing about this horrible weekend is I am now more confident that I really do need something done. It’s weird because I always fight, fight and fight for answers with this disease…someone to acknowledge I really do have something very wrong with me! And once I get the verification from the doctor as to why I feel like death, or the test that finally show progression to justify my severe symptoms, I don’t believe them!!

I turn around and question myself….bombarding myself with self doubt! Is it really that bad? Enough to do such a risky procedure? Nah, it’s just a cough and who knows how much of these symptoms could be from the new blockage around my heart anyway so how much will this really improve things? I live in pain every day, and if I do this procedure it only helps a part of me…if it is successful! I still have the female junk and my heart to deal with….not to mention my SVC. What if this procedure only causes more problems? I just need to suck it up.

This is our life and while it really stinks sometimes and is beyond difficult at times…we adapt…we manage! 

But this weekend also reminded me of just how bad I have been and how much worse it can become. My viscous cycle all weekend included me coughing, getting sick then coughing again…only to get sick again. With one streak, I coughed consistently for 5 straight hours and that was after my inhaler, nebulizer, cough drops and cough syrup! 

The head pain was unbearable too as was the tightness in my chest! I was crying in pain, I was crying in defeat and I was crying in frustration.

What concerned me the most was the fact that this is how I felt before I went to Dr. Hornick when we discovered that more of my lung had collapsed and I had newly developed narrow airways. So of course fear struck this weekend as to if my lung had collapsed even more? Is my lung getting worse??

This was an extremely unbearable attack and I was surrendering! And while I prayed for God to get me through it and to help me remember that this is an opportunity for me to grow and be more dedicated and faithful towards Him…I joked that He could still change my circumstances…even just a little. 🙂 And then I saw this pop up on my timeline…  

The nebulizer every four hours as well as the inhaler every four hours, basically I am alternating the two so I am doing something every couple of hours, does seem to be helping so I guess this weekend was another reminder of why I need to be consistent with the breathing treatments…even when I feel I am getting better. I feel halfway alive tonight although my cough is sneaking back up the closer it gets to bedtime. Go figure!

The doctor had told me I would need to use the nebulizer every four hours as well as my inhaler. But, I didn’t want to believe that. I didn’t want to admit that I need breathing treatments in order to maintain my quality of life. 

The hopes are that opening my airways will take away my cough, help me breathe a little easier and then I won’t need the inhaler or nebulizer. 

So as you pray for my health, please say a prayer for Tim as well. We supposedly have a blizzard coming tonight which makes his job even more difficult and demanding, especially given that he is a one man show.  And we just had a blizzard last week!   

  

   
And unfortunately this weekend he was stuck at home helping me out and now we will have my appointment in Iowa City along with our regular weekly routine including dance, a solo orchestra performance, small group and church! All of which are very important and a must for attending! Meaning Tim has yet to be home tonight and is missing the complete super bowl because he’s playing catch up and preparing for a blizzard.

Oh and hon…as far as cleaning off my van…can I really say it’s the effort that counts?! At least leave me an ice scraper next time😘😍

 

I finally have a little bit of information to share with you in regard to our next steps!

First off, Monday was my appointment for the female issues I’ve been dealing with. And from my sarcastic post on Facebook the other day, you can probably gather that my appointment did not go well!

All of the treatment options they had me try, are not working! I have gotten a lot better at being patient with new doctors but this clinic I have no one specific doctor and simply see whoever is working that day. This was my third appointment and my third different doctor. It was very evident that they had not even looked at my chart because when they tried prescribing me something else, I reminded them I was on Plavix and questioned if this med would interact with it. He looked at me and asked “do you have medical issues?” So yeah, that’s when I began repeating in my head “respond with grace, respond with grace!”

I now have to go back to them in a month to do yet another ultrasound as well as to discuss surgery. They are concerned about doing this procedure due to my health problems, especially with my breathing issues because I would be put under. They plan to look into my situation further and assured me that they will have more answers for me the next time we meet.

But for now, I guess that whole situation is the least of my problems.

I heard from Dr. Thomas today and he first explained that he would like to do a bronchoscopy to get measurements and figure out just exactly how narrow my airways are. Due to them being my smaller airways, he is not sure if stents can even be placed so his plan is to dilate and try to open them up with ballooning to see if that relieves some of my issues. Then after getting measurements, they will try to find stents that are small enough to put in my airways…if that is an option.

I had been feeling better, to the point that I stopped using my nebulizer. And while my cough had let up, I know that doesn’t necessarily mean my situation is better!

And then just like that, this morning I had a ridiculous coughing spell, resulting in me getting sick and losing my voice…so needless to say I’m using the nebulizer and inhaler again😕😷

At this point, I say just put me under and line up the doctors! Thomas can do my airways, Rossen can do my heart and whoever can do the procedure for the other issues! 😁😜

I am waiting to hear back from Dr. Thomas in regard to some questions I had. He would also like to do the procedure on February 26th and apologized for it taking so long as he is in a different department so that’s the soonest he could see me. But, due to that being so close to Rare Disease Day, I have asked when the next available day would be to do this procedure as I do not want to miss this event! I also asked him just how many of my smaller airways are narrowed as he had reported to me that there are some “potential targets” he would like to try to open up by ballooning.

So enough with that…Tim hasn’t appreciated my humor with this so I will move on to bigger and more important things…RARE DISEASE DAY on February 29th at the State Capitol!!! 

I am attaching the link for you to sign up and attend! Scroll down to Iowa and sign up for the event at the State Capitol in Des Moines! We want the room to be packed so please consider coming to learn more about why this day is so special to us! And remember, I will be doing a brief little five minute speech as well😳

http://www.rarediseaseday.us/events/locations/

And then also, anyone who has read my book…please don’t forget to leave a review on Amazon!! More reviews the more advertisement Amazon gives us and with it being February, no better time than now to push any information that we can about this disease!! Here is the link for that as well 🙂

I know you all continue to pray for us and they sure will be appreciated for us now as we head in to the next few weeks! Thanks everyone and enjoy the upcoming weekend! 

 

With the blizzard and winter storm warnings issued last night, school was cancelled early and the kids were so excited to know that they would be able to sleep in! Which they did, and I was able to work most of the morning…but then it was time to clean house! I figured I would start with the toy box…and once I realized what a bad idea that was, I told Tim he was in charge of the kids and cleaning and I went back to working! 

After some continued encouragement…and bribing, all the kids chipped in to help…with Tim doing the majority of the deep cleaning 😉    
I didn’t say they were happy about it 😄

 

And while the kids didn’t really play outside, you definitely cannot have a snow day without baking cookies!   

 
Skyler always likes making one big cookie for dad!  

And then it was chore time again for Tim! 

As well as cleaning out our terribly long and steep driveway!   

   

I will admit…the first 15 minutes after the kids were up, I was starting to understand why some parents don’t like snow days…especially parents who work at home some days! 😳😬 

But, I got my hours in and I was still able to  have some fun with the kids so it was a win win for everyone…and I am extremely thankful that the day turned out so well! 

As of now no delays for tomorrow but sounds like another round coming through tonight so we will have to wait and see. In the meantime, bedtime for the kids and quiet time for me🙃
Enjoy the rest of your night everyone!
 

God’s timing is always right, and we saw this yet once again this week! 

The night before the marriage conference, Tim was mad that I sucked up all of our data while watching the debate online Thursday night. Apparently my phone had gotten kicked off of our wifi so I was using our data for the entire hour! After the debate I went to bed and shortly after, we got a message that we used 75%…and then shortly after that another message that we had used 100%. I apologized that I had not noticed it sooner but that was not enough and Tim simply replied…”This stuff always happens because you never pay attention.” 

Needless to say, the next day while getting ready to leave, I attempted to put in my contact and it was like the Home Alone scene with the aftershave! The contact touched my eye and I immediately screamed “what did he do to me?!” while grabbing my eye! Haha. Tim had gotten me new contact solution, which I assumed was like any other solution…but it wasn’t. Of course I should have known…it had peroxide and after the burning sensation began to go away, I opened my eye and then decided to read the directions. Directions that specifically told me not to do what I had just done.  

Okay, maybe Tim was on to something when he said I don’t pay attention! Regardless, I was grumpy…

And then it was time to go to the marriage conference! Honestly, at this point I was just ready to go so that Tim would realize how wrong he was to get so upset over something so little!! In reality, I was mad at myself because I knew there was some truth to what he had said.

We checked in to our hotel then went to meet up with a few other couples from our church at the Paul Tripp marriage conference! And boy did things really hit home…with every point that was made! 

Right away Mr. Tripp began talking about how behavior and words are formed from the inside of our heart, which also reveals more about the person saying the words and I’m thinking “oh yeah! This is going to be a good conference…for Tim!” 😃 But, just like that, Tripp then says we need to listen for ourselves…not for our spouses! Wait what?! No! I don’t have nearly as many contributing factors to the problems in our marriage 😉

And once I actually started listening “for myself”, I realized how many excuses I actually use!  

We were all laughing at different scenarios Tripp would share such as how a husband might feel his blood boil when someone eats the last blueberry muffin that he had been looking forward to, or how a wife might feel with kids “conspiring” to mess up the house after she has just cleaned it. Little things right? Not really because our lives live in these small moments! Those good things can turn bad if it results in us lashing out at the ones we love.

Tripp continued to say that money, intimacy, stress, work…”are not the issues of our problems but the location of where the problems show up!”

Dang it! The more I thought about that one quote, the more I realized my heart is still scared and bitter and I use almost everything I encounter throughout the day to justify why I get short with the kids or why I might snap at Tim…and a lot of the excuses stem from my health. I’m too sick, I’m too tired, I’m overwhelmed or I have too much work to do…and the list goes on! 

This is not what I was expecting out of the conference! 😳 

Tim and I went out to dinner afterwards and both agreed that while some of the things were hard to hear, and we admitted how wrong our actions and words were at times, it truly was an eye opener and we were so grateful that we were able to attend! 

As we were heading back to the hotel, we saw Ben Carson’s bus so we pulled over to snap a picture. Child locks were on so it took Tim forever to get them figured out in the dark but I finally got that picture…  

And then once we turned to drive away, we were all of a sudden facing a man across from us in a suit sitting in a dark car staring us down. Very apparent he was with secret service and I instantly felt uncomfortable. I opted not to snap a picture of him even though I desperately wanted to! His glare indicated that he did not have much of a sense of humor😳

The second day of the conference tugged on my heart just as much as the first day! And again, so much good stuff but I can’t even come close to describing everything! 

Marriage is a way for God to transform us and by far the best quote of the conference…”marriage is always victimized or enhanced by what we treasure.” And how true is that?! I want our marriage to be filled with love and joy and faithfulness. I want to make sure I’m seeking out the true treasure in order to enhance our marriage!

It was an amazing conference and I recommend it to anyone if given the opportunity to go to or even watch it on video! We laughed and maybe I cried a little too 😉

I have a blueberry muffin for my screensaver as a reminder that something as little as a “lump of dough with blueberries” isn’t worth getting upset over and crushing the spirit of those I love…nothing is! And even Tim apologized for his words over the data drama😉😍   

Hope you all have a good week and don’t forget to caucus on Monday! 

Okay, I need prayers now more than ever…as I will be talking at the state Capitol on Feb 29th for Rare Disease Day!! Haha, I bet I scared ya there for a minute but really, pray for me to say the right things and to be at peace while doing so.

Sharon has been doing so much for this event that the least I can do is talk for five minutes. My health has not been great recently but I am trying to do whatever I can to help her out!

But, I am also encouraging all of you, especially those who are close by the Des Moines area, to come to our event! It is from 1pm to 2:30pm and there will be snacks too😉 Please consider coming to support us and our cause!

This is from Sharon Ponce‎ Iowa Rare Disease Day Committee and hope the link works…

Hey everyone,

If you plan on attending the State House Event please go to rarediseaseday.us, go to the “Events” drop down screen, click “event locations” and scroll down to Iowa. Fill out the form to attend and submit it. I put the link below, hopefully it will take you there. Thank you!  

rarediseaseday.us

And as far as my health goes, no word yet from any of my doctors which again is fine as I have been dealing with a major sinus infection. Sunday I began to have extreme head pain while sitting in church and after it not letting up, I went to the walk in clinic. Doctor felt my sinuses looked clear so I was sent home to take over the counter medications. Waste of my time but Asher sure enjoyed the trip… 

And then Monday hit and I had the worst head pain I have ever experienced…and remember my SVC was completely blocked at one time😳 It was to the point where I avoided any and all type of movement for a few hours until I was able to function again in the late afternoon. But, I was back in bed early with the kids and okay…I am laughing at what I am about to share!!

Many of you know I usually sleep on the couch to elevate my head in order to reduce pain and pressure in my head and chest. Well lately I’ve been sleeping in our bed with pillows to prop me up…Leah’s huge giraffe pillow to be exact. And, I’ve been sleeping with compression socks to help the circulation in my legs…haha, I know, I’m a catch right?!

Today Tim informs me that he walked in to our bedroom last night, the smell of insulin in the air because my pump was unhooked and there I was spread across the bed sleeping high in the air on all of my pillows, including Leah’s huge giraffe pillow that takes up half the bed…and my legs with the compression socks were sticking out from beneath the blanket! 

Oh my gosh I about died when he told me that he just stared at me and seriously thought “wow, seven years of this!”

While it’s hard to let Tim see me at my sickest or help me after my procedures or bandaging me up, this is different and I can’t help but laugh at the site I must have been!! Hey, this is the reality of my illness and with all of my dreary news lately, I figured this might lighten things up😜 But yes Tim…you are one lucky man!!🤓🤓🤓

Haha, anyway another bad morning of head pain today was more than enough so I went back to the doctor who finally gave me some antibiotics to hopefully clear up the issue! And once again Asher was stuck coming along with mom to yet another doctor appointment but he did great and I am so thankful for cars and tractors😍 

So by the time I hear back from Iowa City, I should be over this sinus junk!

Today I also got the chance to go listen to Leah read at school for her reading celebration! All night and all this morning she was reminding me what time to come to her classroom so I am extremely grateful that I was feeling better by the time I had to be there…not that I would have missed it anyway!

So once again…I would love to meet all of my followers so don’t forget to mark your calendars and come support us in Des Moines on February 29th for Rare Disease Day.

Sharon explains the details in the following paragraphs…

 Rare Disease Day Awareness event on Monday, February 29, 2016 from 1 p.m. to 2:30 p.m. in the Legislative Dining Room #15 at the Iowa State Capital, 1007 E Grand Ave, Des Moines, IA 50319. This will be an excellent opportunity for you to learn about Rare Disease Day and Rare Diseases from the members of our community – your constituents – about how rare diseases affect people in the great state of Iowa.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed.

See you all then!!

Today Tim and I celebrated our 7th wedding anniversary and boy does it seem a lot longer than seven years! 😬 

As for celebrating, we took the family to church then over to grandpa and grandma’s for dinner. The kids got to play and have fun with their cousins while the adults were able to visit and catch up on how the week had been treating us! 

Once Tim was home from chores we pretty much did nothing! And that is okay! We hung out and just enjoyed the quiet after the kids were in bed 😉

And when I’m surrounded by quiet…I think! Sometimes that’s a good thing😏

As I have shared, I have had a lot of severely unexpected complications and progression with my disease recently. I have also shared that one of the worst things about this, is when I see how it affects my husband. And honestly, if the tables were turned I don’t know if I could be as supportive and strong as he is. 

I mean, if it was me watching him go through all of the health struggles, the pokes from routine testing, the constant scans due to new progression and trying to figure out what and if anything can be done to help him…to see him struggle every day and think that I could lose him far too soon than I ever dreamed I would?! I don’t know if I could handle it, so how does he deal with that?!

Well, from what I’ve seen…he deals with it through his sarcasm and sense of humor. And I give it right back to him! For instance, and my mom gets SOOO mad when we joke so skip this paragraph mom😉 but, Tim recently has been encouraging me to spend as much time as I can with the kids, basically incase I am dead soon, aka…really because he just doesn’t want to deal with the kids! Haha!

Well, anyone who knows me, knows I don’t keep quiet on things like that😬 I on the other hand encourage him to do baths and bedtimes and homework so that he is able to function without me! 

YESSSSS, I know this might be morbid but what else can we do?! Tim amd I continue to pray and laugh and live!! If we didn’t joke we would be crying!!

Because, while I love him dearly for making me laugh, it also pains me knowing he’s making jokes the same reason I do…to mask our underlying fears of what might be! I know my husband well, and the more sarcasm he has…the more sad or scared he is🙁

But these underlying fears are when we are able to step back and pray! Because if we lived in fear of what MIGHT be, what a sad life we would live! Of course Tim and I are fully aware of what I am facing! It doesn’t take a genius to figure out if my heart, my lung and my airways are affected…

Yet, Tim continues to be by my side at every appointment, well minus the female stuff☺️ While I know my illness is also killing him inside, he is always there for me!! And how amazing is he to put my needs ahead of his own fears and feelings!

Tim and I have had our share of rough patches, to say the least. We have done and said things to each other that we are not proud of but we didn’t just give up…and we didn’t ignore them either! We we able to reach out for help, we were able to admit our wrongdoings and we were able to forgive.

Marriage can stink at times! That is for sure, and throw in one of us with drastic health problems?! Honestly, it almost tore us apart…I felt inadequate as a wife and the stress and pain was too much for Tim at times, but I am thankful we pushed through and it has actually brought us closer together. 

Because honestly, I have often wondered what’s the point of building our marriage if I won’t be around long? And thankfully Tim and I both realized how wrong that is to think!  
If I’m not around long, I’m not going to simply stop living and caring about others! I’m actually going to love like I have never loved before and make ever moment count!   

So, while Tim and I have had our share of difficulties, I am so grateful that he has honored the vows he took before God! He is here through my sickness, and we know these new issues will bring on a whole new set of obstacles and challenges. Tim continues to work hard to provide for our family yet he also tries to help out with the kids or the house or the shopping when he can see me struggling…all while still being with me at all of my appointments.

God brought this man in to my life ten days after I had searched over five years to find a doctor who could help me. I believe Tim is my soulmate, the man God chose for me to be with! 

I am beyond grateful that God has him beside me to be my life partner, my shoulder to cry on, to support and encourage me throughout this crazy life and most importantly, to make me laugh. We have had so many laughs and so many tears and through all the tears, Tim always finds ways to make me smile!

Happy anniversy to an amazing father, husband and a great man! Here’s to seven years behind us and to many more ahead! 

So, thank you to my wonderful husband Tim for loving me at my best…and for standing by me through my worst! I love you always and forever 😉😍 

Well, never ended up hearing back from the doctors so we will see what next week brings. Actually that’s okay because I haven’t felt the best this week. I did skip out on my nebulizer a day or two because we’ve had some busy days, which resulted in chest pressure and my cough attacks coming back…so yes, I started it up again! 

Or I might also have a touch of a cold too so definitely not doing any type of surgery or procedure until I feel healthy…well no viral infection that is😉 

I had my diabetic follow up as well as labs this week and everything looks great on that end. Cholesterol is even perfect so my blocked coronary artery is definitely not the result of a bad diet😉 

It has been a long week but a great week! Nathan celebrated his 12th birthday…  

  

   
And Leah lost her first tooth!!  

Tim and I also had the opportunity to meet and hang out with some people from our new church as well!

And I even got to nap with this little guy earlier in the week…  

What a terrific week filled with all of the amazing people God has surrounded us with!!

I again can’t thank you enough for all of the unexpected blessings…so many praying for us along with the support and encouragement that continues to come our way. We are beyond blessed to have all of you on this journey with us! Thank you and I will keep you posted as to what next week brings!

Enjoy your weekend! 

Dr. Hornick called this morning and while we are still waiting to hear back on the next steps in regard to my heart…we do have the start of a game plan with my airways…that is, if I am willing to follow through. 

Hornick talked with Dr. Thomas…the doctor I met at Cody’s funeral…the doctor I told it was nice to meet him but hoped I never had to see him again. Oops!😳 He seems extremely nice and compassionate, however, I knew if I did see him again some day, it would be due to the progression of my illness. 

I just didn’t think it would be so soon. There is blooper number one for me not keeping my mouth shut😬

Unfortunately the next choice of words hit closer to home only to make me look like a fool later😦 Last night Tim and I got in to a little argument and it was very evident we were both simply tired and overwhelmed…me sick of being sick and him sick of seeing me sick. Some things were said, feelings were hurt and just like that…I told him he could forget coming with me to any more appointments and in fact, I wasn’t even going to tell him when they were! I will go alone and he can just keep himself at home. Okay, first of all…yeah, right!

And then I get the phone call first thing this morning from my doctor! And now I have to call Tim and tell him what has developed! 

I texted him immediately asking him to call me when he had a chance because my doctor had called. Well Tim called right away saying he assumed it was not good news since I wanted to talk to him! Haha. Boy did I feel dumb for my empty threats and all of the things I had said to him the night before! 

But, I am thankful for the call as it pulled me and Tim back together and regained our focus on who is the most important in our relationship! God!!   

So less than 12 hours after my stubbornness and spiteful independence…I was praying to God for strength and peace for what is to come and I was relying on Tim to be right by my side.

Anyway, after all that rambling, I am waiting for a call from Dr. Thomas in regard to setting up a procedure, I’m assuming a bronchoscopy, to dilate my lung in order to get a better picture of what’s going on. The ct scan definitely showed more narrowing of my right middle lobe bronchus so they feel it is a good idea to go in and see just how bad it really is. 

Hornick feels it is better to go in now and try to stent instead of waiting until it’s completely occluded then not being able to do anything. Assuming that it is not blocked 100% already.

Needless to say, this scares me and Tim terribly and I can’t help but think about Cody…as I’m sure all of my fm family does. Cody had a lot of the same issues I have and one of my biggest fears and one of my biggest what ifs with all of my procedures…I saw become a reality when he passed away. 

A lot of emotions running wild and a lot to think about. I still don’t have much information. I have questions to be answered and research to be studied on this airway business. I mean I live with one lung so this can’t be much worse right?!😏

Plus, Dr. Hornick is still trying to get in contact with the Mayo Clinic in regard to the clinical study. It will also give us the opportunity to get another opinion on my situation. 

So, that is where things are at and while it has been an emotional day, Tim and I were able to finish it off at small group filled with good discussion, good friends and some great laughs! 

Will keep you updated as I get more specific information from the doctor. 

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!

Fibrosing Mediastinitis

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!