Challenge accepted…

Now that I have all of my appointments out of the way, figured I would provide a quick update!

I did end up having angioplasty back in June to open up my SVC stents. I was more nervous this time due to my original interventional radiology doctor being out of the country. I even called Iowa City and voiced my hesitation questioning if I should try to hold off until my regular doctor comes back although I knew the intensity of my symptoms would prevent me from waiting. I was assured this doctor had read my history, knew of fm and was confident he could open up my stents. This new doctor would be only the 3rd doctor to open my SVC stents in the almost 15 years I’ve been doing this procedure!

With all the covid restrictions still in place, I was once again forced to wait by myself before and after my procedure so I killed time…and probably annoyed Tim who was sitting in the waiting room, with inappropriate text messages🤣 and selfies…

My stents were 80% occluded but the doctor was able to open them back up and there were no complications with my 26th angioplasty…yes, 26! I am only keeping track now because my husband said once I hit 30 angioplasties then he will take me anywhere I want to go! I mean forget monumental anniversaries or birthdays…I need to have four more angios for that milestone…such a romantic isn’t he? Haha!

Then this week I saw my cardiologist and pulmonologist and for the first time ever, I was scheduled to see both of them and do all of my testing on the same day! It definitely made for a very long day but it was nice to have them both over and done with!

I arrived by 7:30am and once again was not able to bring anyone with me.

Once the gown was on and the IV was in place, I did my ct scan and then saw my cardiologist. The appointment went fairly quickly since it has already been determined that we will no longer attempt to open the pulmonary artery stents. We will continue to monitor all of the other concerns with my jugular veins etc. but for now we will schedule a one year follow up unless my symptoms progress more rapidly. He also said depending on my symptoms at my next appointment might determine if we do a scan since I get them done so often for the other doctors and the last thing we want is for me to start having issues from all of the radiation and dye.

I then went over to do my pulmonary functioning tests which again went pretty quick and then I waited to see my pulmonologist. I was very impressed with how efficient the day had gone because you just never know if things will stay on schedule with back to back appointments!

To our surprise, the doctor said my breathing test results had actually gone up just a little bit for the first time since 2015 so I was very excited to hear that! He was quick to say though that of course I know tests results don’t always correlate with how I feel so maybe they just caught me on a good day. Either way, I took that one sentence as a challenge to make sure my tests are even better at my next appointment! This was a great way to end the long day!

So the plan right now is to follow up with pulmonary and cardiology in one year unless my symptoms get too bothersome.

As far as SVC, I am scheduled for another angioplasty in December as this new doctor feels I waited too long this last time. I will wait and see how I feel in December as to whether or not I push that appointment back because again, my care team and I have already discussed the extreme wear my body has had from so many tests and procedures. While we want to make sure we are still treating my symptoms, we also want to intervene the least amount as possible…and I am definitely okay with that!

I am hopeful that I will not have to provide another update on here for about a year but we will see what the next couple of months bring in regard to my SVC stents and overall symptoms! And while I don’t write as often as I used to, I am still getting a lot of messages from those of you newly diagnosed with fm who just happen to come across my blog while scrolling the internet for information so please continue to reach out to me! I am always eager to share my story but even more eager to hear yours and encourage you in any way that I can! Stay strong and battle on!

My New Year

As many of you know, today is Rare Disease Day,

Rare Disease Day is held on the last day in February and this is the day when millions of us come together as one in the rare disease community to share our stories in hopes of raising awareness…and in hopes of finding a cure!

I have given you a glimpse in to my life as to what it’s like to live with a rare disease that I was diagnosed with called Fibrosing Mediastinitis through slideshows, pictures and obviously a lot of writing but this year for Rare Disease Day I decided to do a video. It will probably be repetitive to many of you who are familiar with my story because it is a quick overview of the battle I have been facing ever since trying to find the right diagnosis!

With that being said, since it is a video, I wanted to clarify a couple of things that you will hear. I am extremely thankful to say that it has been 8 months since my last angioplasty. This past year, however, I did share with you back in some earlier blogs, that the doctors and I decided that we would no longer attempt to open up the stents in my pulmonary artery. My pulmonary stents had closed within a year after I first got them put in and then every attempt to open them back up throughout the years has been unsuccessful. My hypertension is stable and I have been able to manage these symptoms so we just decided the benefits do not outweigh the risks anymore.

I also shared awhile back that having so many angioplasties to keep my SVC stents open in which they accessed through my arms has really put a strain on my body and last year my arms basically gave out, meaning doctors are no longer able to access my stents through the arms so they have to go through the groin now. However, it is starting to become more of a challenge as well to access the SVC stents through my groin because that is how my other doctor accessed my pulmonary artery stents!

All of this has been shared throughout my previous blogs but it still seemed to take some of you off guard when I brought it up again this week on my personal page. I want to clarify that the challenges of accessing my stents are not the reasons why I haven’t had my stents open in 8 months.

I truly am feeling pretty well and overall I feel I had one of the best years I have had in a long time! I am extremely thankful that my body is still holding its own and while I always have symptoms, some days worse than others, I have not had a terrible amount of “bad days” that kept me in bed for long periods of time!

The kids and I continue to do school at home…

And the Lord has even provided me enough energy to walk two or three miles a day!! We have tried to make the most out of all this snow!

I just wanted to clarify real quick that the news I shared had already been discussed this past year so it really isn’t anything new. Yes, my body has been through a lot and it is getting tired but I have really focused on the things I am able to do now and stopped comparing myself to what I used to be able to do! I am beyond grateful that the Lord continues to provide all that I need for each passing day!

Thank you all for taking time out of your lives to not only follow my story but for all of your support and encouragement! And for all of you fighting Fibrosing Mediastinitis, I hope the following video encourages you!

https://m.youtube.com/watch?v=e9ckidFU-ik

Get comfortable…this is a long one!

What a crazy time it has been for all of us!! And just when I didn’t think things could get any more crazy, God put me on a new path I never imagined I would be on so blogging has kind of become less of a priority lately. A lot of you still reach out to me though and I am overwhelmed by the love and prayers I continue to receive from so many of you I don’t even know! I figured the least I could do was give an update on how things are going for us!

As far as health…it is what it is. I had a follow up last month in regard to the procedure I had done back in June and I am happy to report that everything seems to be mostly stable for now! I did have a few new masses noted in my chest and on my spleen but they do not seem to be causing issues at the moment so no point in stressing over what might become of those.

As far as my pulmonary stents go, like we had already discussed in the past, my cardiologist does not feel he can really do any more for me in regard to those. One stent is closed which we had tried to open up twice in the past but it closed back up almost immediately. The other stent in my right pulmonary artery is about 40% closed but we have also tried to open that one up as well and it never fully stayed open either. We discussed again how the benefits I would receive from them being open were not really worth the risk anymore of trying to go back in and open the stents back up.

We will continue to monitor all of my other issues with the closed jugular vein and new masses then just follow up if I notice any drastic changes in my symptoms. I do go to my pulmonologist next month for pulmonary breathing tests and to discuss those results with him then I will follow up with my interventional radiologist sometime after that!

So while my health is the same ole same ole, a major change has happened in our home! I have decided to homeschool Asher and Leah!!! Yes, I know, it’s crazy!! Me….homeschooling?! Well…let me share with you how that came about!

About 3 years ago, a friend from church approached me about BSF, Bible Study Fellowship, an international bible study for women. She asked me to join her but Asher was not in school at the time and the bible study was only during the day so I simply declined her invite. The following year this friend approached me again and asked me to join her since Asher would be in school. Okay, I will admit that I was a little disappointed when she remembered because now I had no excuse to say no. Haha!

I started the bible study and from the very first meeting I loved everything about it! This was the first really big women’s study I had done because while I knew the basics of the Bible, I felt like a lot of these groups were way out of my league. However, the women were all so welcoming and I was instantly drawn to how genuine everyone was. As discussions took place, everyone respected each other’s opinion and graciously expressed differences in their own interpretation if they had one. I was able to recognize that all this time I had let the enemy use my insecurities to keep me from joining any type of group. It was in my BSF class that my passion to build my relationship with Christ really grew and instead of being intimidated by their wisdom…I was finally able to see my sisters in Christ as women I could learn from, seek guidance and knowledge from!!

At the end of the year my group leader approached me to ask if I would be interested in being a group leader for the next year. I was extremely hesitant because this was my first year attending so I did not feel ready to take on any type of leadership role. I agreed to pray on it and went home to discuss things with Tim. And while I was coming up with excuses as to why I should not accept this position, I felt this tremendous calling that God wanted me to be involved somehow with BSF so how could I say no? I was so scared because I did not feel equipt to do it. Long story short, the following year, I became an administrative leader for BSF. It ended up being so much more than I was expecting and it seemed like every week we were faced with new challenges but every week God provided exactly what we needed when we needed it.

So fast forward to January of this year! BSF had just returned from Christmas break and our schedule is pretty similar to the school schedule which meant our year would be coming to an end in May. We were asked to prayerfully consider continuing with our leadership role and right away I felt that I would continue to be involved in BSF. And then March came and before we left for spring break we were asked again to pray over our positions but this time I immediately sensed the presence of the Lord say “no, I have prepared you for something else.”

I started crying when I shared this with Tim because I had never experienced such a strong sense of what the Lord was calling me to do. I was excited but I was scared because why would He want me to say no to being involved with a bible study? What is He preparing me to do? That meeting where I had felt the Lord so strongly ended up being our last in person meeting because of covid which caused our group to meet online for the remainder of the year!

Covid also meant the kids did not return to school the rest of the year and I began helping them with online learning. And thanks to the fact I had taken on an administrative position with BSF, I already had a couple of the apps downloaded for my kids and knew how to use them!! While Leah and Asher did pretty well at staying caught up, we had tears of frustration from them trying to figure out their assignments and me trying to figure out how the teachers had been teaching them. The google meets and zoom classes caused anxiety because they did not like talking to a screen…it just was not the same. It was during this time that I finally realized what the Lord had been preparing for me to do as I got an overwhelming calling that I needed to homeschool our children next year. I prayed over and over and cried once again because I was scared and I knew the Lord wanted me to do something I had no experience doing!!

I am not smart!! I don’t have the attention span to read about what I need to teach my kids let alone sit and do school work with them all day! Anyone who knows me knows that I do not take many things serious!! I am quick to laugh and make jokes about anything and everything so how can I be a teacher to my kids??? What if I dumb them down??? Why is the Lord asking me to do something I know absolutely nothing about?!

And then I looked back on my year as an administrative leader with BSF and realized I had the same insecurities and fears when I said yes to that calling. However, God had provided all of our needs throughout the year! It finally hit me that God did not use my leadership in BSF to only further my skills in administration so that I could continue to be involved with BSF, but He simply used that position to show me how to not rely on what I thought my skills were but to rely and trust in Him 110%!

As I began to research homeschool curriculums and prepare for a very different school year, I started to develop more symptoms from my fm. I was battling extreme fatigue, some chest pressure, which very well could have been from stress haha, and I was also having more frequent episodes with low oxygen…

I joked with Tim that I was feeling physically worse than I had in a long time yet was being called to do one of the most important things I will ever do!

The kids and I started our school year the second week in August and I was convinced they would be back in to the public schools within the month haha. But here we are still having school at home and things have been going better than I ever imagined they would go!

The Lord has blessed us all with eager attitudes and the kids have done so well at listening and doing what they are supposed to be doing!

Baking a cake and designing it with continents has probably been one of their favorite activities so far…I mean it is cake…

Then dad will usually take over in the evening with agriculture and more physical learning haha!!

One blessing I was not expecting is the fact that I even get excited when I sit down at night to prepare and review what I will be teaching my kids the following day! I cannot wait for the school day to start over again!!

I have just been in awe of how gracious the Lord has been and how He has shown me that regardless of the insecurities I have or the physical symptoms I experience, He gives me the strength and wisdom that is needed to get us through our day! When I feel I am at my weakest, He provides me the strength to keep going!

So, that is how I came about homeschooling!! It has been super busy but super amazing!!

We were also able to get away to South Carolina for vacation over Labor Day! We told the kids not to get too excited though because of covid and hurricane season so our prayers always began with “Lord willing!” We knew there were a lot of obstacles that could prevent us from going and our entire family put our trust in the Lord knowing that He already had everything figured out so if we went it would be awesome but if we couldn’t go then there was a reason!!

Well, the day finally came to leave…everyone was still healthy and the South Carolina weatherman had confirmed no chance of hurricanes over the next 10 days! We drove all night and got to Gatlinburg where we stayed the first night to get some rest. There just happened to be a car show in town so Nathan was super excited as he loaded up his phone with pictures of all the cool cars passing by. We continued to walk downtown and enjoy the beautiful weather.

We also drove through the Roaring Fork motor trail in the Smokies and got to see the beauty of God’s creation which also included some of His very cool wildlife!

Leah and I then went back to our hotel while Tim took Nathan and Asher back downtown to go to a car museum.

The boys loved it and Nathan said “this is the best vacation ever and it’s only our first day!”

The next morning we loaded in to the car and drove to our condo in Isle of Palms. We were pleasantly surprised to see that even though it was Labor Day weekend, the beach was not crowded and it felt like we had the entire ocean to ourselves! We spent the weekend playing in the waves…

…and then when I got exhausted from making sure the waves didn’t wash any of our kids away we went swimming in the pool…which gave me the chance to sit and relax haha!

Monday we all went to Morris Island which is only accessible by boat and searched for sharks teeth!! Leah and Tim had the best finds…

Nathan and I struggled though and pretty much just walked the beach and found a couple of smaller sharks teeth! Asher was really more interested in talking to our tour guide and asked questions the whole time!

Asher and the tour guy in the back still chatting it up!

It was a long day filled with beautiful weather, lots of sharks teeth and sand dollars! We also got to see a couple of sharks that scared me as I bent over to wash off our sand dollars only to look up and see fins!!! Another perfectly blessed day that ended with a beautiful sunset over the Charleston Harbor as we made our way back to Mt. Pleasant!

And since we knew there was a good chance we might not be able to go on vacation, the shark tooth tour was the only activity we scheduled so we spent our final days visiting Charleston…

Definitely a lot of changes from the last time we were there over Christmas. The red tint on the following picture is the spray paint that could not be fully removed…

If you are familiar with the Market in Charleston, all of the shopping has to be done from outside now due to covid…

….and we hung out on the beach!

Okay… so remember I did not find many shark’s teeth on our tour? Well during our morning walk at our own beach, I was trying to take a picture of the pelicans and just happened to look down and find this HUGE tooth!! Tim and the kids could not believe it and Leah said God blessed me with the biggest one since I didn’t find many the other day haha!

It had originally looked like it might rain every day but we had 80 and 90 degrees of dry weather every day instead!!! The only time it did rain was one day for about a half hour later in the afternoon so kids took the opportunity to swim in the pool again…

The day to leave came way too fast and we all expressed gratitude for such a beautiful time at the ocean. On our way home we stopped by the Smokies and this time we stayed in a cabin for two nights!

So that meant for Tim’s birthday he woke up on the beach…

and finished his day celebrating in the mountains…

We were very fortunate to see some more amazing wildlife!

As well as a couple more beautiful days filled with blue skies and warm temperatures to enjoy the scenery throughout the park…

With so many things that could have prevented us from going on this trip, we were extremely grateful for the Lord’s goodness to not only make this trip happen, but for everything to turn out perfectly from happy kids to beautiful warm weather and smooth travels with no major traffic or construction. Everyone stayed healthy and the kids were even excited to get back in to our school routine right away on Monday…even though I wanted to take one more day off to recuperate!

Again I jut cannot express our gratitude for how generous the Lord has been not only with homeschool but with such an amazing vacation too.

And while the last couple of months have been going extremely well, we have been facing some difficult challenges since arriving home. We know that the Lord is faithful not only in the good seasons but also in the hard ones and while circumstances can change by the day or even by the hour, our Lord is sovereign and He is good. And just like we said with vacation…the Lord already knows how these circumstances are going to play out and we are confident His glory will shine through any darkness that we encounter…Tim and I just need to hold on to each other and hold on to His truth!

The following is a Facebook link to our Sunday sermon that was filled with the encouragement we needed to hear at the most appropriate time so I highly encourage you to listen to it if you are able…

Thank you all for loving on my family and especially for your continued prayers!

Deuteronomy 31:8

I’ve had a lot of recent questions on how my procedure went a few weeks ago so figured it was time for an update!

I have always said no appointment is ever the same when I go to Iowa City. Once to the hospital, our masks went on proving yet again this was going to be a new experience for my otherwise ordinary routine procedure.

As we entered through the hospital we were stopped along the skywalk by nurses in masks, gowns and face shields to question us about possible COVID symptoms. We then followed the social distancing signs…

to the next stop where we were given name tags.

Shortly after we were seated in the waiting room, a nurse called my name and informed us that Tim could not come back with me. She explained that while one person is allowed with the patient to come to the hospital, they were not allowed in back where I would be prepped and recover.

Tim and I gave each other a quick kiss…through our masks and then he was left to sit in the waiting room until I was done.

I had originally prepared to be by myself but now I didn’t feel as brave as I once had when I played the scenario out in my head. I missed Tim. I missed him joking with me about something ridiculously silly only because he was trying to keep my mind distracted. I missed him tying my gown because for some reason I am completely incapable of tying it without getting my hair in to a tangled mess. I missed him winking at me as the nurse inserted the IVs in to my arms and I missed the sweet comfort of his hand on mine as we waited for the nurse to come in and say it was time to go.

And now, for the first time in the 13 years I have been doing these procedures, I was alone. But then I remembered one of the truths I had held on to that encouraged me…

Thankfully I was blessed to be the first case of the day so I did not have to wait long. Once in to the operating room, I was transferred to a cold table and covered with warm blankets as the nurses came from all directions to prep me for the procedure. I stated my name, birthdate and my interpretation of what the doctor would be doing as they put oxygen on me. I was told that I would be getting some medicine to relax and then that was that! I vaguely remember holding my breath on occasion for scans and having conversations with the nurses until the procedure was over.

After I got back to the recovery room, I texted Tim to let him know I was done and then the doctor came in to visit with me.

He began by saying that I had a new collateral vein in my neck which I reminded him was the reason I decided to call him. I had noticed odd veins after being out in the garden one day…

He said one vein unfortunately did not close but I questioned why the concern because collateral veins are good! He confirmed that yes, collateral veins can help develop new paths for blood to get where it needs to go but collateral veins can also be bad. He explained that I had reported some intense symptoms yet my stents were not all the way closed.

Even thought they weren’t completely closed, he was glad I did not wait to come in. They had narrowed enough to need angioplasty so when they opened the stents back up as much as they could, a collateral vein did not go away like they normally do. Since that vein is still open it kind of works as a detour because blood will continue to use that vein…which then can interfere with the efficiency of my main veins. We discussed that I had tests and a follow up with my heart doctor next month so we would determine our next steps from there.

I thanked him again for visiting with me and then he discussed all of this with Tim as well. After a couple of hours I walked out of the hospital with my husband, his strong hand finally back in mine, to head home.

I was starving and ready to hit our usual spot where we always get to eat together…Culver’s! But, I realized almost immediately that this trip home was going to be very long. I felt horribly sick! Tim pulled out of the parking garage and was able to somehow find a somewhat secluded area where he pulled over just in time…

After several minutes I got in to lay down in the back seat. We had to pull over two more times within the half hour so while I was not able to eat anything, Tim decided to stop and grab himself some lunch. With the busy interstate, so many meds on an empty stomach and being the sickest I have ever been after a procedure, packing a bowl after all these years had finally paid off! I couldn’t help but thank God for Tim who has done this with me enough times that nothing surprises him!

The kids were waiting to greet us when we arrived home.

Skye had come over to watch them and was quick to help with anything I needed before she headed back to work.

Tim had also planned to go to work the following day but I had been so sick through the night that he stayed home to help with the kids. I was absolutely miserable between the sickness and the soreness.

Once again, this procedure proved to be a little harder on me. The sickness lasted over 24 hours but the soreness is still going on. My chest is tight which is usually expected after angioplasty but I’ve also developed a cough again along with some fabulous brain fog. I can’t seem to shake the fatigue either and overall, I just don’t feel much relief this time around.

But that is okay because while I might need breaks throughout the day, I am still active and able to keep up with the kids…and that says a lot haha! And we were able to experience a little bit of summer after our local splash pad finally opened back up!

I had been dragging my feet about posting this update because it doesn’t seem very encouraging to people who aren’t living it.

For instance, I shared the following photo with someone a few days after my procedure and they were quick to reply “you aren’t even healed though,” so I asked where it said anything about physical healing?

Yes I am still experiencing physical symptoms but my soul is refreshed with every procedure because every procedure proves God’s goodness…regardless of the results! I may not be physically healed or physically stronger but the Lord healed my spirit…and with my salvation will eventually come that beautiful physical healing because of His love and sacrifice for me!

I am happy with the results! I went to the hospital, they were still able to access my veins and intervene! I did not die on the table and I got to come back home to my family! We will just have to try again next time!

As always, thank you for your prayers and words of encouragement!!

10 months

It has been 10 months since my last angioplasty!!! Back in February I had an appointment and my SVC stents were narrowing just enough that I could have set up angioplasty to open them back up. After talking with my doctor, he did agree we could wait until my next appointment with my cardiologist the first week in May. Depending on how everything looked in those scans would determine when I would need to schedule an angioplasty, which I was hoping I would still be able to push back.

But then Covid hit and who would have imagined we would be on lockdown for two months?!! After a lot of praying and discussion with my husband and doctors, I rescheduled my heart appointment from May to July, meaning that my angioplasty would get pushed back. By this time I was confident my stents needed to be open!

I told Tim if it wasn’t for being in the peak of this pandemic I would have called my doctor sooner to get in. Not too long after I had rescheduled in February, the chest pressure got tighter, the shortness of breath became more labored and fatigue was just too much. If this covid is as highly contagious as reported, chances were pretty high I would get it. My body feels extremely weak and vulnerable right now so I figured the wiser decision instead of putting off my angioplasty any longer was to actually go have it done. This way doctors could open my stents as much as possible giving my body a better chance of fighting any virus that I might come across!

So, tomorrow Tim and I will be heading to Iowa City for my procedure at 9am. A HUGE answer to prayer this week was that some restrictions were lifted meaning that Tim can actually come in to the hospital with me!! I was prepared to go in alone but am extremely grateful he will be with me for the nurses to harass him to make sure he gives me a sweet kiss and he will of course add some sarcastic encouragement as I am wheeled away to the operating room!

While my symptoms have been pretty intense, I have still been making the most of our family time together. I have been trying to maintain the health that I do have without putting too much pressure on my heart and bad lung. So speaking of trying not to overdue it…yesterday the kids and I went to one of our favorite spots on the bike trail. Asher had his bike, Leah had her rollerblades and I walked.

Now that they are older it is actually a good workout for me as I try to keep up with them. Well, we decided to do a different loop…a short loop that I thought brought us back to where we started. My plan was to do one mile and then just hit some of our other local spots. However, my husband was not with us like he normally is to navigate and I was wrong…dead wrong! The loop did not bring us back to where we started. It was not just a mile so it did not even come close to where we started!! Our one mile walk turned in to FOUR miles!!!

On the hottest day of the year!!! The kids handled it well overall, although by the time we made it back to our car they were complaining of sore muscles which resulted in me telling them they needed to be thankful they even have legs to walk with!! I was feeling their pain too and trying to find the positive haha!

Leah’s face says it all…

And yeah…as you can see my SVC syndrome was in full force! My chest was thumpin, my head was pounding, my breathing was painful and my face was deep red purplish?!

But the same way I encouraged my kids, I encouraged myself! I first thanked the Lord for factoring in my bad decision making and providing me enough air in my lung to make it back home!! Then I thanked Him for the fact that if I could do four miles in 90 degree weather knowing my stents are closing, even though it was a challenge, I still did it!!

I am eager to get back to Iowa City in the morning so that I can get my stents opened and work on getting my body even stronger.

I have been overwhelmed by how many of you have reached out to us and we are so grateful for your continued thoughts and prayers! I look forward to updating you in the next few days when I am feeling up to it!!

For God so loved the world

When I heard coronavirus/COVID-19, the respiratory disease caused by a new virus was now in the United States, my first thought was “why did I convince the doctors to let me wait another three months to open my stents?” I had just told Tim a few nights prior that I was going to call and see about getting in sooner due to some increased symptoms but now I have to wait until the end of April. And just like that the “what if” scenarios began dancing in my head.

Since my diagnosis of fibrosing mediastinitis back in 2002, I have experienced my share of fear over the unknown, anxiety over others dying from the same disease I have and wondering “am I next?” I have experienced depression and defeat from the overwhelming pain of one symptom leading to another symptom and frustration over the lack of treatment options to “fix” me. I was swallowed by bitterness and anger as I focused only on my circumstances.

And now I see the world consumed by all of the emotions I have experienced with my own disease and my heart aches! It aches for those who are being so cautious of not catching this disease that they have become paralyzed in their own fear. Or for those who have stocked up on supplies and left others who really need it with nothing. My heart aches for so many who are sick and have to suffer through the discomfort as they just wait out the symptoms or the fear of not knowing when they will get better. My heart aches for the families who have lost loved ones. It aches for those getting denied testing and care, for the medical teams who feel helpless and have to turn away yet another patient because there is simply nothing they can do without the adequate amount of medical supplies.

But my heart aches even more for those who do not have the hope in Jesus to get through what looks to be some very hard days, weeks and even months or years ahead of us! What will this do to our local small town businesses and how will this affect the world my kids are growing up in? What if I can’t get to my doctor at the end of April? What if my symptoms continue to get so bad that I cannot function throughout the day? What if my stents are closed all the way and doctors can’t open them back up? My husband has not been feeling well so what if he has this virus? What if my kids get it?? What about my other family members and friends? What if I get this COVID-19? What if…I die?

So much unknown right now but my hope in Jesus is the only thing that is able to push my “what if” fears to the back of my mind because He is the same as He was yesterday, today and tomorrow! He is faithful and calmed my “what ifs” by putting these words on my heart from my testimony I had shared a few years back…”No matter the outcome, my faith is in God and who He says that He is.”

The world is a scary place right now which has given me a passion to share my story and to especially encourage my kids in their walk with Jesus. When I get consumed with the number of deaths and the blunt press conferences urging people like myself to stay home and avoid life, I turn off the social media and focus on Jesus and my family. We pray together and my little Leah probably encourages me more than anyone as she randomly repeats words from the sermons we hear on Sunday such as “God has a plan and it might make us sad sometimes but He loves us!” Oh how I pray that everyone would have this assurance!!

Since my initial “what if” moment, I have had peace with this COVID-19 that has seemed to stop the world. I am going to deal with this just like I have dealt with the flu, the common cold season because a cold can turn in to pneumonia easily for me, or any other new sickness that arises…I will continue to take necessary precautions to limit my chances of getting sick. I avoid large crowds, I avoid any type of physical contact in public such as hand shaking and I am now trying to stay home as much as possible.

I am fully aware that I am in the 20% category the media keeps talking about. I know if I get this illness I could die but I am also not going to become so frightened that I stop living! I have already seen how God is drawing my family closer to each other but more important…how He is drawing us closer to Him!

With everything kind of at a standstill, we have had more sit down meals together this last week than we have had in a month! The kids have all gotten along and offered to do certain chores or help cook. All these little things we do throughout the day have been opportunities for us to pray together and have a lot of great conversations!

We have been playing games on the rainy days…

And enjoying the fresh air on sunny days!

We have had sweet friends encourage us with flowers….

And sweet friends make us laugh with toilet paper haha!

I let the kids give me a makeover…

Ohhh you noticed the messy attic in the background? Although it took all week, the kids did AMAZING at helping me organize!

I even let them keep their pet “Spots the ladybug” in their room…

Although I did panic one day when I thought I sucked it up with my vacuum! Haha!

We finished our week by watching church in our pajamas but what an amazing feeling it was knowing that my church family was at home too…focusing on Jesus and worshiping with me through social media!

As someone living with multiple chronic illnesses, I know we need to take this outbreak very serious. But we can’t make ourselves so anxiety filled that the emotional stress gets us sick too!! We need to apply that not only to this sickness but to any areas we have extreme stress over!

I am beyond grateful for so many of my friends who have reached out to see how I am doing, offering to help with anything I might need! With our world changing daily and with Tim working long hours seven days a week, I know the following weeks are going to be challenging but I am so thankful for a God who does not change. He is steadfast and sovereign, someone we can call out to day or night! He is the only thing stable in this unstable world! So I have pushed the fear and anxiety behind me and my family and I will continue to take it day by day with a lot of praying, laughter and love!!

We are in a very trying time so let’s use it as an opportunity! Our world is indeed changing and I have a feeling that this COVID-19 is just getting started in the United States, recently it has infected even more individuals in my area. Let’s make history not by the number of lives it took but by the way our communities…our world, came together as one in love, kindness, bravery and generosity! We can’t always control our circumstances but we can control how we respond to them.

“No matter the outcome, my faith is in God and who He says that He is”.

I thought we were past all that

“I thought we were past all that” was my husband’s sarcastic response when I reminded him of my appointment in Iowa City. I simply smiled, well, maybe I rolled my eyes at him then just walked away. It had only been three months since my last doctor appointment in Iowa City and five months since my last angioplasty to open my stents…but it had felt like a lifetime.

I headed to my appointment for scans and was prepared to have the doctor schedule a procedure. While sitting in the waiting room, a regular nurse of mine came out and said “Hey! There’s my patient who wrote the book” and took me back to get prepped for my CTA scan.

I was then sent back out to the waiting room in my gown and IV…

I did the fabulous scans with contrast that makes your body feel extremely hot then I was sent over to discuss the results with my doctor.

As expected, my stents were narrowing but I explained that while I was experiencing the sharp chest pain, fatigue, foggy memory and shortness of breath, I did not feel my symptoms were to the point of needing immediate intervention. I then joked saying that while I like seeing him, I was really hoping to hit that one year mark of no angioplasty! The doctor smiled and agreed that my scans did show that I still have some blood flow and since I had not reported any significant changes in my symptoms, he was fine with waiting to do another scan in three months and then possibly intervene at that time.

I was beyond ecstatic as I called Tim to tell him the good news even though he doubted if I was telling him the truth. I did confess that oxygen was brought up again and the doctor did say eventually we would need to do something about my jugular veins which are 100% and 50% blocked.

I hung up with Tim and thought about that word “eventually” when the doctor had said it. For a split second my heart had dropped. “Eventually” meant that I would someday need more stents so it wasn’t a matter of maybe, it was a matter of when. Then I thought of my husband’s remark knowing he too is fully aware….we will never be past this! It will always be.

I turned my radio on and pushed that word to the back of my mind. Why was I even worrying about it? It’s not like we don’t know the routine by now! But…God has been, is and will continue to be faithful so there is no need to worry about what doctors say “eventually” is to come!

I was blessed to finish out the week by having a Mom’s morning with Asher at his school…

I am extremely grateful for the health I have right now but regardless of whatever my test results might bring, I will continue to find joy in the every day ordinary moments because God has been, is and will continue to be good!

Hope💕💕

Fibrosing mediastinitis is for sure a devastating diagnosis. But for you newly diagnosed…I wanted to share this article!! I know several other individuals who were treated with these injections and are showing encouraging results! I know we might be diagnosed with the same illness but our bodies are so different on the inside that one treatment may work for some while doing nothing for the rest of us.

Either way though, more options are becoming available so please continue to push forward and fight for some form of treatment! I have heard great things about Dr. Peikert who is listed in the following article. My doctors have even visited via email with him so if you have a great medical team but they may not know what the next move should be…have them contact Dr. Peikert! He is usually eager to review scans and give advice. I am so happy for those who will benefit from this and will continue to pray for those who are still searching for the right form of treatment. #hopeforacure #dontgiveup

https://www.mayoclinic.org/medical-professionals/pulmonary-medicine/news/management-of-fibrosing-mediastinitis/mac-20471676

A short, but longer break from Iowa City!

I had a follow up with my cardiologist and overall it was an encouraging visit! I did the routine scan…

and after comparing it with my previous scans the doctor determined that all of my pulmonary veins and arteries looked pretty stable with no major changes! While it can still be frustrating when there is no “evidence” of what is causing my flare in symptoms, I am extremely grateful that my heart and pulmonary stents have not gotten worse. I am even more excited when my tests confirm that my left lung is still going strong with no masses!

And like I said in my last blog, my breathing tests were terrible the other week when I saw my pulmonologist so that could very well be the reason for my symptoms too. I am praying that the new inhaler will indeed provide relief, especially from this dang coughing and chest pressure!

I do not have to return to Iowa City, Lord willing, until at least March…that’s like a vacation!! The whole process will then start over again with scans and follow up appointments with each specialist!

Of course I am extremely grateful for such a good cardiology report and know that regardless of my symptoms, my heart is still holding its own! So while this has motivated me to move forward with my physical goals, it has also been a little discouraging at times when my symptoms are in full force like they have been so thank you all for the prayers and support you continue to send our way! God is so good💕💕

The start up of follow ups

It’s that time for all of my follow up appointments so here are a couple of updates!

First with the great news!!! Yesterday I had a follow up on my eyes and once again everything looked pretty stable so no injection and I go back in six months!!! I really cannot express in words how happy this makes me because that means a guaranteed six months of no eye injection! I am beyond grateful how God used my previous doctor leaving to lead me to this doctor! And not just because he hasn’t given any injections (although that does help haha) but because I truly do trust him and feel he is doing what is beneficial to me, and not to him!

Then today I was back in Iowa City to see my pulmonologist which was by far the worst I have failed at my breathing tests. On my last attempt to push out all of my air, there was a sudden loud bang that made my tech turn around and shoot straight up from her chair while I shoved the stupid tube away from my mouth and kind of crouched down in the booth. We discovered that part of the plastic thing in the tubing had popped like a balloon while I was blowing out!! She said that was the first and we were both laughing so hard after we thought about how ridiculous our reactions must have looked!! I told her I do these things every six months so guess it was time to make it a little more exciting! Unfortunately my breathing was the worst it has been so as a result of today’s appointment, I will be starting an inhaler again in hopes of helping with some of my symptoms…mainly the horrible chest pressure and my cough which I have been dealing with for about a month. I have had to leave church in the middle of service and sneak out of other activities or avoid them altogether because of extreme coughing spasms. They are horrible and very intense!

November 4th I will do more scans and see my cardiologist to get a better idea of the progression and discuss other options we might want to look in to.

Like I mentioned earlier…having a doctor you can truly trust is a must!! And while I have an amazing medical team, my pulmonologist is probably my favorite doctor! He is very knowledgeable about fm and all of the other health issues I have going on and he really listens to me. He does not sugarcoat anything and tries to rule out all options, not just assume what might typically be a given.

I have some personal fitness goals I am working on so while discussing them with him today he explained the whole muscles use oxygen and the stronger our muscles get the easier it is on our respiratory and body…all that stuff. I told him I’m pushing myself as hard as I can in hopes of getting stronger and building stamina to meet my goal. He then pointed out that is my human nature to push myself but that fibrosing mediastinitis is a very bad disease and does indeed cause extreme damage which will continue to put a limit on my abilities. For the first time I felt like my doctor was indicating that while I push myself as hard as I can, I may only be able to maintain what I can do now and not necessarily improve. I just smiled and thought to myself…challenge accepted!😉

I can’t wait to see him in six months and tell him all about meeting my goal…and I’m pretty sure he’s hoping I’ll have a story to tell as well!!

Thank you for all of the prayers and support today and every day!! Enjoy your weekend!!