Well, I had my appointment in Iowa City today and while I will be having surgery…it’s not necessarily what I expected.

I arrived early thinking I would get in and out but my ultrasound lead to some other concerns…concerns that were almost missed. There was a specific area on the ultrasound that looked “unusual” but the nurses kind of skimmed by it not really saying much. As they were finishing up, they suggested I wait where I was as they did have a concern about what they had seen…and when in doubt…they are supposed to follow up with the doctor.

Shortly after, the nurses came in, followed by the doctor, and a more intense ultrasound was done. It was discovered that I have a cyst on my ovaries, some other diagnosis that could be the cause of my current symptoms…and some polyps on my uterus. One of the polyps was quite large and very unusual so nurses had skimmed over it thinking it was some odd part of my body…because it did not appear as a “typical” polyp😜 But thankfully their intuition kicked in and they decided to have the doctor come check things out more closely.

Needless to say, the polyps are the major concerns! So…I will be having surgery. In fact, I will basically be doing three surgeries in one as I have three different issues going on. The hopes of course are that the polyps are not cancerous…and that the rest of the procedures will stop my current symptoms.

The downfall…6-8 weeks recovery!!! With all the procedures I have had, I have never been down that long! How do I do that with kids and a job?! A job that only a couple of us are left to do?! Nobody can do my job and this is an extremely critical time where I should not be missing work!

So, needless to say today was a very tough day! Due to all of my other health concerns, this will be an official surgery where I will go to the operating room instead of just an outpatient clinical procedure. The doctors confirmed that while all of these procedures are common…my health problems are not common and will be what makes the procedures risky!

With that being said, this last two weeks has come with extremely forceful challenges after challenges and my prayers have simply turned to silent prayers of tears! I am so overwhelmed with everything going on in our lives that I simply have no idea on how or what to pray for! So many things have bombarded us but I keep telling myself God is good and I need to believe that! 

And I also need to say that one thing that has been keeping me going is that our pastor and his wife came over to pray with us…before half of these issues even came about…and they prayed that they know how hard it is to be sick with kids…and for some reason that stuck out to me. They prayed acknowledging me as a mom…not just as an illness, but as a mommy…so I often think about their specific prayer and that truly helps me push forward through these challenges! 

I am so much more than just an illness or a burden but sometimes I forget that.  

 I am so thankful for all of you who encourage me or simply say things that make me laugh!

Life is extremely difficult and this season of sadness and obstacle after obstacle seems to be never ending…and while I have shed my share of tears, I know God will get me through all of these challenges!

So, that is all for now. Please pray for our entire family as we face some difficult times ahead of us! 

Tim and I took the kids to see my grandmas over the weekend and we had a very nice visit with them and my parents! My uncle from New Mexico is also in town and it’s always fun chatting with him as well! 

We also saw my brother Ryan and Sarah and their little ones so the cousins were able to get a chance to play together outside while we all visited at grandma Doris’!   Then we had a pizza party at grandma Ruth’s!  
And again grandma Ruth…I am really sorry that Asher tormented your bird and tried to let him out of the cage!!😬😳😜 He and Leah just couldn’t figure out how you “caught” the bird and why you were keeping him! Haha!

Then the rest of the weekend was spent laying low, hanging out with more family and cousins for Sunday dinner as well as trying to catch up on things around the house…seems like we’re always playing catch up these days though so nothing new there😉!

I am also back in Iowa City tomorrow to discuss the next and one of the last few resorts for all of my female issues…surgery😒 

Due to so many of my other health problems, no doctors have wanted to touch this issue. But, after the last SEVERAL months of trying different meds and treamtments…nothing is working. I will be doing another ultrasound to rule out any other causes for my pain/symptoms and if the ultrasound looks fine we will then weigh the pros and cons of doing the surgical procedure. 

It’s been an exhausting but good weekend. While I continue to battle my fm symptoms, we had a wonderful couple from church provide us a meal which really helped me out so that I didn’t have to stress about what to make, let alone have to cook…so thank you once again😍 We are so blessed!!

I am slowly feeling better and it’s just a matter of making sure I am being consistent with my nebulizer. And while it frustrates me knowing I need that to maintain my breathing…I am trying very hard to be thankful that there is at least something that CAN be done right now to maintain my level of health. 

With that being said, I’m tired, it’s past my bedtime and I have a long day ahead of me tomorrow so goodnight! 🙃 

Hope everyone has a great start to your week!

It has been a long week so I have really been looking forward to the weekend. A weekend to lay low and relax…but really, “relax” is not in the vocabulary when you have cows and kids like princess Leah…notice her sticker earrings  😍  Then this morning I was staying positive and ready to make it a happy Friday! I got up early to shower and do my daily devotion before the kids got up, because once they’re up…chaos begins🙄

And…as I was upstairs in my closet trying to find something to wear, Leah comes up and says we need to move. Tim and I asked her why and she nonchalantly says, as she waves her hands in the air, “because this is an old house and there is always water falling from the ceiling”😳

Yep, sure enough that got Tim out of bed real fast and as he went rushing downstairs to see what Leah was talking about, I yelled at Skyler through the door, who was taking a shower, to turn the water off…NOW!! Sorry Skye!

The water was leaking through the walls and the ceiling!!! Ugh, needless to say that sucked up a lot of my annoyingly peppy and happy mood! 

Oh…and words of advice…when water is flowing everywhere and the door and the walls and the floor are all wet….THIS is not a good time to remind your husband of the “good and angry” class you’re taking at church😬 The look he gave me reminded me that I should probably just let him be and go do my nebulizer😜

We were able to get it cleaned up and due to Tim never being eager to work on plumbing…that shower is definitely off limits for now!!

Thankfully Tim and I did not let this set our theme for the day! We said our goodbyes and went our seperate ways…which eventually ended up going better for both of us. 

As far as appointments, I get to enjoy one more FULL week before I go back to Iowa City!! Wahoo!! I will also go back to the eye doctor soon in hopes that all is still well and no more surgeries or injections will be needed!

So, with that being said, it’s time to unwind from the day. Time for movie night which also means popcorn! Hope I can stay awake 🙃   

Enjoy your weekend and the nice weather everyone!

First off…I need to thank all of you for the overwhelming response we received for Rare Disease Day!! Sharon did a great job and I was pleasantly surprised by how many of you came to the State Capitol to show your support!!   

It meant so much to me!!😍 I’ve always said what amazing families and friends Tim and I have and you guys showed just that so thank you! And thank you to all who sent encouraging messages and prayers as well!

And speaking of friends…even one of my besties from high school showed up and boy how she hasn’t changed!! Haha! I was laughing from the moment we started talking until the moment she left!  

Heather and I were stuck like glue all through high school along with another bestie Sara. Unfortunately after high school we lost touch BUT it was actually my disease that brought us all back to together!! When I did my very first newspaper article on my illness back in 2007, Heather’s dad had seen it in the paper and took the article to her, who then was able to find and contact me after several years of not seeing or talking to each other!!! So, a positive that resulted from my illness!

Now, back to the big day! I kept the kids out of school so they could come to the Capitol with us and they were excited…well, probably just excited to miss school😜  We loaded up and we were out of here…obviously a fun ride for everyone 😉  

And once we got to Des Moines we did some last minute touch ups on our wardrobes!  

We got to where we needed to be and then greeted those who started to arrive!

Our state representative Sandy Salmon stopped in to show her support and while Governor Branstad even spoke, they were not able to stay for the event.  

  

Other individuals shared their struggles about living with a rare disease, definitely very difficult to listen to. I was able to get through my speech without crying but my voice sure did tremble😁🤓  

I even got to meet another lady with fm but I won’t post our picture since I didn’t ask for her permission first! haha 😉 And while I was so grateful to meet her in person, it was also heartbreaking because it was her mom who said she read my book and felt as though I had written their story. And Tara stated we could be twins due to the similarity in symptoms and challenges we have both faced. I have always said how many amazing people I have met since my diagnosis, unfortunately though I wish I could have met them all under better circumstances. 

After our event, Tim and I walked around with the kids for a little bit and then headed home after such a long day!    

   
So much needs to be done to raise funds for research and medical treatment and it is overwhelming and frustrating at just how difficult that is to do. It’s just not feasible to have research for every rare disease, yet trying to get disability or any type of assistance is just as difficult so many of us are stuck! There needs to be a way to improve this!!

This was my first year of really being involved and again, so overwhelming! But, I am very thankful that I got the opportunity to share my story. Tim and I are trying to figure out a better game plan as to what specific area we need to target in order to gain attention and some sort of relief for so many of us who have been diagnosed with something so rare!! 

But, now we’ve got a whole year to prepare and improve for next time and any suggestions are always welcome 😉 

Thanks again for supporting Rare Disease Day…and for supporting me 😍

Another busy week has flown by and I am ready for the weekend! 

Monday night I stood up in front of the City council and was able to get a Proclamation for the City of Waverly to acknowledge Rare Disease Day annually! Yes!! 

Tuesday night Leah had her performance at school and at first she told me she didn’t want to do it because she’s shy. I reminded her that all she has ever talked about is singing and dancing on a stage and that is what she would be doing. She thought about it for a minute, said “oh yeah” and then got dressed and was ready to go! She did a great job of singing and dancing and oh how proud we were of her! 😍

   
 Afterwards, we went out to dinner with family…and ran in to even more family and friends so it turned out to be a big celebration which the kids really enjoyed!

Wednesday was dance and then church night for the kids. Tim and I also started a new class on Good and Angry…yeah, it will be a great class for us! Haha! The first night was excellent and really stirred up a lot of good conversation from Tim so I am looking forward to the next couple of weeks!

Tonight was our first night of nothing…and Nathan’s turn to cook which he chose little pizza burgers…surprisingly! He  did a great job and even offered for Asher to put the finishing touches on.    

 They turned out perfect and Nathan was already making suggestions to me for the next meal he wants to prepare!

Tomorrow night is Skyler’s band performance and then the weekend is here!!

I am still fighting my symptoms of fatigue and shortness of breathe, etc. but look at the week we have had…and this isn’t counting working and managing the house and kids! I am soooo thankful that I have had better days and am not missing out on life!!

And speaking of life…we have had two great couples that we know, have babies in the last couple of days! A little boy and then the other couple had a little girl so please keep them all in your prayers as they adjust to their new precious little loved ones! 

Thank you again for all of the texts and messages and cards full of support and encouragement! And mom and dad, thank you for the beautiful balloon and candy bouquet with the gift card! What a nice surprise today and extremely appreciated!   

It truly is overwhelming at how many prayers are being said for us and we are beyond grateful! 😍😍

Enjoy your weekend everyone and hope to see you on Monday!😉

What a couple of exciting days it has been around here! Before I get to that, however, I will do a quick update on test results so that we can get the discouraging news out of the way! 

As for the fluid on my lung and me feeling so awful…the cultures came back negative in regard to certain fungi and other infections. This is good news…expected news…but this also means there are no medications or treatments that will improve my symptoms. The doctor confirmed that all of my symptoms are related to the progression of my FM and he was simply ruling out other possible causes. Once again, this means I am left to deal with my symptoms but thankfully the nebulizer is at least helping my cough! 

I also got my new treadmill on Friday as my doctor had encouraged me to try to do 10 consecutive minutes of exercise a day, regardless of the fact that I am very active throughout the day with my kids…but it’s not the same. Tim got it all set up and I was very excited to try it out! But really, only 10 minutes? That’s nothing! I used to run miles!! 

After a lousy one minute though, my heartrate was up to 170…and I could feel the burn in my chest and head…instead of my legs! This should come as no surprise to me since I feel like this everytime I go up the stairs…but I thought for sure I could handle walking!! 

Needless to say I was a discouraged so I just went to bed 😩

With that being said, the start of a discouraging weekend ended with an amazing date night!! Tim and I are working on a bucket list and while we didn’t go to Chicago or New York to attend a play…I did get him tickets for the national Broadway show called Once, at the Gallagher Bluedorn Performing Arts Center!   

Skyler helped pretty me up for the big night😉
And even though we have not had 3 consecutive days of 60 degree weather which is Tim’s guideline for when the beard comes off, he shaved knowing how excited I was about this night!!!    

 And then Tim and I were off to dinner..

Finally a Broadway show and we weren’t sure what to expect. The voices and the songs and the performers…EVERYTHING about it was AMAZING!!! We had great box seats right up front in the second balcony and got the opportunity to move even closer after intermission!! Of course I cried but there was also a lot of laughter!! Such a powerful moving performance and sitting next to my husband with his arm around me made it that much better 😉  

   

  It was a perfect night and I loved everything about it…even Tim enjoyed himself and opened every door for me! What a perfect gentleman😉😍 

So while I got discouraging news on Friday, it didn’t keep me from enjoying the rest of the weekend! I know I will have more bad days to come but better days are always around the corner too and those better days are what makes the battle worth fighting!

Enjoy the rest of your week!!

Asher and I decided to play outside for a little bit this morning after the kids got on the bus. As we were walking around the corner of the house, we heard an extremely loud bellow and Tim instantly said “we have a cow dying.”

Tim assumed the cow was bloated from the glance he had taken so he went to get a few things from his truck that he might need to debloat the cow. The bellow became more frequent and even louder, scaring Asher back to the house, while I walked up to the pen prepared to help in any way that I could. 

Right as I arrived at the gate, I saw the cow tip over with his leg sticking straight up. I also observed what I assumed was cold air coming from the cow, which I didn’t understand as I was certain he had just fallen over and died. I then noticed that “air” was constant so I yelled back and questioned Tim “ummm is that cow smoking?!”

Tim came up and was shocked to see a cord beneath the cow and without thinking he ripped the cord out from beneath it, resulting in a crackling noise and flames shooting all over! 

I stood there dazed realizing I had just been watching a cow get electrocuted!!! I even saw the same bewildered expression on Tim’s face as he says ” I probably shouldn’t have grabbed the cord!”

We laughed in disbelief but also with unease as we acknowledged how fortunate we really were and how much worse the situation could have been! Thankfully this happened outside in the pen because if it would have happened in our barn…with all of the bedding…along with the strong winds…the whole barn would have been up in flames in no time! 

Apparently the cow was able to bend the gate over and reached the cord of the heaters used to keep the waters from freezing…kind of ironic huh?! 

Oh, and about 30 seconds after I thought I had witnessed the cow’s last breath, he stood back up, and was a little shaky, but he survived and is doing well now!! 😭  

After all the excitement was over, Asher was ready to get back in the house and I was ready to start working.    

Then we have also started something new as a family…kids cooking dinner!! Yeyyyy 😄 Our days are pretty full throughout the week, however, Thursday is our one free night of no activities! So, every Thursday each of the kids will be taking turns cooking dinner…which they are actually excited to do! They plan the meal, I get the groceries and then they prepare it! Skyler started off since she is the oldest and chose homemade pizza! She did it all…  

And had a lot of fun!!  

It turned out great and everyone loved it!! 

Nathan has already chosen his meal for next week and this is a win win for everyone! Kids are helping me out by cooking the meal while I offer assistance. And we have a lot of fun doing it…along with it being a great opportunity for me to have some one on one with each of the kids…not to mention them gaining some new skills and becoming more independent!

Definitely a good day to be thankful for…and we all learned some things along the way!!😬😍

Stay safe everyone 😜😂

I am still waiting to hear back from Dr. Thomas in regard to the results of the cultures they took from the fluid in my lung. I am hopeful it will be something that can be treated…and I am hopeful it will be something as simple as an antibiotic to clear it up.

I continue to have my ups and downs as far as my symptoms go and recently began experiencing night sweats which is very odd to say the least! And while the past few days have made it more difficult to keep pushing, I am getting through. 

Monday helped as when I texted my boss to say I would be working from home she replied only to remind me that due to it being President’s Day, we had the day off so that was a nice surprise! Haha 🤓 

Tim and I were able to have a little part of the day to ourselves in which we just bummed around and did lunch…but it was well needed for me.

And I was also able to get Asher a haircut…   

Finally!!!! 

And then for those of you who have heard me mention Cody, I am attaching a link to the segment his mother Sharon did on their local news channel. It is extremely difficult for me to watch especially now at a time when I am struggling so much with my own symptoms. 

I really appreciate all of the prayers and support that you all continue to surround me with! Please keep Cody’s family in your prayers as well, as they deal with such a loss. Sharon has been a HUGE advocate for all of us battling this disease and while I am so thankful for her, it came at such a big price that she shouldn’t have had to pay.

And as a reminder…my whole intent of blogging is not for sympathy or especially for pity…but simply to show what it’s really like to live with a rare disease!

The never ending doctor appointments, the countless scans and tests and procedures…only for it to lead to a guessing game of treatments. And while I am very fortunate that treatments have helped me in the past…I am blogging for awareness! 

This disease is so close to having a cure and I honestly believe that! Dr. Hornick in the attached link is part of my medical team and I am beyond grateful for him. So pray that more doctors can be like my team of doctors at Iowa City, doctors who care and are compassionate and passionate about helping each patient they encounter!   

My doctors have gone out of their ways to research this disease and help me search for answers. I wrote my book and I am blogging because like Dr. Hornick said, if you google Fibrosing Mediastinits, there is very little on this disease! My book and my blog are at least a couple more sources for others to learn from and to especially draw hope from!

So enough rambling…here is the segment and feel free to share and spread for awareness…

http://kwqc.com/2016/02/15/midwest-fungus-deadly-disease-a-young-mans-fight-for-his-life/

Friday has come and gone and I am thankful for that! While hearing there is nothing they can do, can be discouraging, I was extremely happy to hear the doctor say my airways looked better than what he thought he would see! 

First off, Dr.Thomas is AMAZING! He spent the first half hour going over my scans and explaining everything in great detail…and in a way we were able to understand what he was saying! As he began talking about stenting, I knew right away that in my position…I did not want them! The doctor even agreed that the benefits would not be worth the risk of stenting. But he also said he would just have to get in and look around to see how bad it was.

And then it was time to go get the bronchoscopy done!   

The team of nurses and doctors were wonderful and had the same humor I do🙃 They did have difficulty with my IV at first but once that was in we walked back to the surgical room. 

An ultrasound of my heart was done first to measure my pulmonary pressures and a med student, who was observing, questioned why a heart ultrasound for a bronchoscopy? I couldn’t help but laugh and waited for it…wait for it…”well, Rebecca is an unusual case.” 🙃

They made me gargle with some nasty stuff that numbed my mouth and throat. The nurse put on a face shield and I was tempted to ask if he was going to be welding something!! Then it was time for the meds, and they began to kick in as the nurse explained the next steps which included spray that would result in a lot of coughing.

While they continued to prep me one of the nurses asked how I was feeling and I said I was doing pretty well. In the back I heard another nurse yell, “did she just respond? She needs more meds” and that was the last thing I remember 😌 

I vaguely remember seeing the tube above me as they were pulling it out but then I went back to sleep. After the procedure Dr. Thomas talked to Tim and my sister until I was more aware of what was going on. I am so grateful for my sister coming to be with us but I don’t have a clue what she was talking about here…☺️ Love you Michelle😘 

Overall the airways looked pretty good and the doctor was actually glad they looked better than he thought! My pulmonary artery stents, however, are pushing on one of my major airways but thankfully it is nothing to be concerned of at this time. He reports that fortunately there is just enough opening in each of my airways for air to pass through so he feels that it’s very important for me to continue with the nebulizer to help keep those airways open.
The one area that was significantly narrowed is unfortunately not able to be stented due to the location. My middle lung is also more collapsed and he feels this is what might play in to my coughing and other symptoms. 

He also discovered some fluid in my lung and explained that blood is getting to my lung, however, the blood is not able to drain or flow back out of the lung due to the middle part of my lung collapsed…and the middle part can’t be stented due to it being completely blocked. So my vessels are buldging… 

He does think the fluid is venous blood, blood that should be going to the heart but don’t quote me on that? He was able to get samples of the fluid and hopefully we will hear back and have more clear answers by the beginning of the week. 

I will admit, normally I get grumpy with results like this…results that verify my symptoms, results that also confirm nothing can be done. But, the fact that my airways looked a lot better than expected is a huge relief! 

While of course I don’t like relying on the nebulizer to help maintain me, I am thankful there is something available to manage my symptoms. 

I also have to give a HUGE thank you to all of you who prayed for me and for all of those who prayed with me and Tim! I have a long list of verses I keep when people share them and I was reviewing them numerous times before my procedure. 

And once in the operating room, I had my life verse to give me comfort…although I am concerned that I said it out loud something like “she is clothed with strength and dignity…and oh boy am I going to laugh at this in the days to come!” And then I chuckled!! Haha! Oh well, if that’s the worst thing I said out loud then I should be okay😜

But point being, all of your prayers brought  calmness and comfort in a situation where I wasn’t sure I would be able to get through, so again, thank you!!!

Tim and I were able to make our date night out to dinner at church for Valentine’s Day!!   

 It was wonderful food and we got a chance to get to know a few more people along with a lot of laughs!

I am still a little sore and getting tired easily along with the coughing so it’s time to hit the nebulizer and go to bed! 

Another blessed day to be grateful for! Goodnight! 

I received an unexpected call from Dr. Thomas’ office yesterday and it sounds like after our consult on Friday…we are going to do the procedure!  Yikes!! I was able to get the majority of my questions answered via telephone so I do feel somewhat better about what is to come. 

Tim is hesitant about it happening so quickly…well, about me doing this at all but honestly, I had a really REALLY tough weekend…and something needs to be done. This procedure has to happen at one time or another and I would rather just get it over and done with. 

Friday will possibly just be the first step in the process anyway. Dr. Thomas plans to go in via bronchoscopy and get measurements as well as attempt to open some of the airways that are narrow. If I do need stents, they will not put them in that day but instead, they will have to order the appropriate sizes and then I would have to go back and get them put in at another time. Praying airways aren’t as bad as they think and this simple ballooning will keep them open without needing stents.

Of course we won’t know my exact situation until they are actually in to see what’s going on. And depending on how my airways look will depend on the level of risk the procedure involves as well as the time it takes. 

If all goes well, which it will, it sounds like I will only need to be in recovery for about an hour or so and then I can come back home!

My wonderful sister is also meeting us at the hospital on Friday so Tim will have someone to visit with while I’m in the surgical room. Thanks sis and while Tim is always by himself during my other numerous procedures, I know he will appreciate the company and distraction for this one!

I am confident it will go fast and I am confident all will go smooth. God already has this taken care of so no need to worry about the what ifs. I have been doing the nebulizer every four hours, every day which has drastically helped my cough, however, I continue to get shaky and my sugars spike after each use. I am hopeful that Friday will be a success and I won’t need to worry about anymore breathing treatments for awhile!

We have an amazing God and Tim and I also have a wonderful team of support with so many of you praying with us and for us! We cannot even begin to describe what a comfort that is so thank you all for the prayers and willingness to help in any way needed😭😊

Tim and I have dinner plans on Saturday night at church so I don’t intend on missing date night with my amazing husband😍

Excellent song I’ve been listening to…

And just because this little guy melts my heart and makes me smile…just like his daddy! 😍😄😍 

  

But those loafers…