Wear those stripes on Rare Disease Day!

I normally post on the last day of February which is Rare Disease Day but wanted to share a little early this year.

I have been struggling a bit over the news I shared in my last blog regarding my most recent appointment. While I have had random bursts of tears behind closed doors on occasion, I also think it’s more tears of overwhelmed gratitude for the life the Lord has blessed me with.

I started going through the last year of pictures for my video and noticed I didn’t have as many pictures from my procedures (I had angioplasty in January, March and September) because doctors had to start going through my groin again to intervene…too many angioplasties have damaged veins in my arms making them hard to access. Now we are trying to limit the amount of angioplasties altogether so I’ll have even fewer pictures.

As I was scrolling, a song came on and seemed to correlate perfectly so I couldn’t help but add a couple of old favorite pictures from earlier years in the video as well. While there is a lot of pain behind my smile, I think the song speaks for itself as to how my last year…and every year has been like living with fibrosing mediastinitis, SVC syndrome, congestive heart failure and pulmonary arterial hypertension…how can I not feel loved?💕

I am so grateful for all of you who not only reach out to see how I am doing, but to those who also share your story in hopes of finding better treatment options and a cure for the next person who is diagnosed with the same rare disease we continue to fight.

Make sure to wear your zebra print or black and white stripes on February 28th to show love and support for those battling a rare disease…alone we are rare, together we are strong💕

Another first

We had been preparing and praying for a really long time in regard to the day my husband would possibly make a career change…

Then, back in October, Tim got a wild idea (a God thing) to use our building downtown that has been vacant for a year…as a “market” for a variety of vendors and small businesses. Within a week, vendors had reached out and we apparently had a new business for Tim to manage!

We have been overwhelmed by such a positive response from the community! We finished out the year with the market then headed back down to Alabama to update the condo that we own as a short term rental! Our intentions were to just paint the rest of the rooms we hadn’t been able to finish the last time we were in town and update some furniture but we also decided to put in some backsplash, rip out a couple of kitchen cabinets and paint them…

It was a productive trip and we did what we could in the short time we had! We made sure to finish our time with a day at the beach before heading back home for my follow up appointment in Iowa City.

It was a busy week and a half of updating…we were all tired haha!

If my husband hadn’t switched back to being self employed, he would have been back at work saving his time off to use when I had angioplasty. And since it was just scans, I told Tim he should just stay home and focus on the market but he insisted he go with me (another God thing)…and I am so glad he did!

Once I was done with my scans, we met with the doctor to discuss the results. As he pulled my file up on the computer, I couldn’t help but cringe as I saw the picture of myself! It was from several years ago before my stents had been opened and my face was extremely puffy!! I kind of giggled and pointed it out to Tim but before he could say anything, the nurse standing behind us blurted out “it doesn’t even look like you!”

The doctor gave me one of his sincere smiles then looked back at the computer and began with “a couple of concerns…”

Apparently what they had been concerned about for so long, has happened. My stents are narrowing, which I expected, but scar tissue from the trauma of so many angioplasties is starting to cause problems as well. He was able to compare all of my scans over the past year and show us the new problematic spots. We discussed my symptoms and decided that we are going to try and hold off as long as possible before doing another intervention and again the doctor stressed the fine line I’m walking. We really need to limit the amount of intervention to avoid continued damage from the angioplasties…yet not wait too long where my stents close completely.

The second concern was adding another stent. We had discussed this in the past but it sounds like the new stent would be in a tricky spot that would possibly cause different blockage and more damage. The doctor thinks we should at least try this as a last result but praying it won’t come to that!

For the first time, I walked out of Iowa City without a follow up appointment and will just call to schedule the procedure when I think it’s time.

I was thrown off by the news and my voice trembled a bit when I called my mom so she knew I was fighting back tears. She was full of encouragement but I could tell she was trying to stay positive for both of us and the conversation was short. The next morning she called and was like “God knows, and that’s all that matters!” I agreed then the kids and I got back on track with school…

Tim and I also continued to stay busy preparing for a new year at the market and one day as I sat there painting…

I started playing out the last few months since Tim had switched jobs and was able to see how the Lord had provided for us each step of the way! From better insurance to starting up the market and now this was the first non procedure appointment my hubby had been able to attend with me in a very long time! God knew I would need this man by my side to make me laugh in the midst of a hard day! The results of my appointment had been a surprise to me…but not to my Heavenly Father. God truly is good and whatever the future holds…He already holds me in it!

Thanks again for all of you who continue to message me on the day of my appointments…and especially for the prayers💕💕 I don’t go back to Iowa City until July/August for my pulmonary and cardiology follow up so until then…stay strong and battle on…https://m.youtube.com/watch?v=EPIO-1n6T08

The Big 3 0!!!

My last angioplasty from March seemed to hold up pretty well but regardless of how much or what type of intervention is done, the fatigue never seems to go away. As the months went on, more intense symptoms returned just in time for all of my follow up appointments…starting with my pulmonologist .

Can you guess how I did with my pulmonary functioning tests?? Yep! Results were lower than last time but as we continued to discuss my symptoms, my doctor’s focus turned to my heart. We reviewed my history of exams and angioplasties and I informed him that I was supposed to see my cardiologist in a couple of days but might need to reschedule due to my kids starting their golf program. He smiled and said he understood kids take priority, especially golf and agreed he would like to visit with my cardiologist first so we pushed my heart appointment back a few weeks.

In the meantime he ordered an oximetry test for me to have done at home…

which did not interfere with me getting my kids to their golf lessons…

As long as my levels did not drop below 87 for 5 minutes I would not need supplemental oxygen and my oximetry results showed that my oxygen dropped for 4 minutes and 20 seconds!! Barely passed by on that one!!🤪

When I followed up with my cardiologist, a physical exam concluded that my jugular veins were distended so more tests were scheduled to be done later in the month to determine whether my pulmonary arterial hypertension and congestive heart failure was progressing.

In between seeing my cardiologist and the upcoming tests…I had angioplasty!

Unfortunately Tim could not be back with me before my procedure so I kept him updated through messages. I’m not sure who was more excited when I texted him that two of my favorite nurses who have been with me since this all began were caring for me! What a sweet comfort the Lord provided for my 30th angioplasty!!

Once back on the operating table, the nurses and techs made small talk as they began to prep me. As usual, they mentioned how I could probably tell them more about this procedure than they could but I pointed out every time I come to Iowa City, there always seems to be something a little different. And as if on cue, the tech then told the nurse they were doing the “starfish” prep. I had never heard that expression so I asked what that meant and she explained they were prepping four areas…both sides of my groin and both arms as there was a chance the doctor might need to use four different access points for this procedure. He hadn’t accessed my arms in a couple of years so why now? Why prep both arms AND both sides of the groin? The nurse began to administer meds to me and while I could not feel any pain, I was pretty jittery and talkative as they continued through the procedure. She joked how I must do this way too often to be used to all of the medicine so she gave me some Benadryl and that is all I remember. I later informed her that I can’t take Benadryl at home because it makes me too sleepy!

My SVC stents ended up being 80-90% narrowed so my interventional radiologist was able to open them back up to around 80%. And the whole point of doing a “starfish” prep was due to him knowing my jugular veins were narrowing so he would possibly be intervening. He did end up doing balloon angioplasty to open the jugular veins back up to about 70% and thankfully he was able to access all of the areas through only one side of my groin!

We were so grateful that all went smoothly and Tim and I were on our way home in no time!

Another big praise is that I am scheduled for a cta scan in four months to see how my stents and jugular veins are holding up…opposed to just scheduling another angioplasty!!

My recovery has gone well and each day brings a little more relief…minus that dang fatigue but I think that is just one symptom I will have to always deal with.

With my husband’s birthday also being the weekend of my angioplasty, we decided to take a quick little road trip up to Michigan in our old 1999 dodge van we converted in to a campervan haha! I must say though, as much grief as I got about leaving town within a couple of days after my procedure, I think it was the best recovery I’ve had since doing these procedures! I got to lay in the back with my feet kicked up…

and the kids knew meals were whatever they could make in the microwave or whatever dad was cooking on the grill…

And as far as this being my 30th angioplasty and Tim saying he would take me wherever I want to go…I am just happy to be doing what we are doing while I still can!! Someday we will get to Alaska or do our big road trip out west but for now we are able to take little weekend trips here and there or have simple campfires in our backyard. We have been to Charleston, Alabama, the Smoky Mountains, local parks, bike trails and all of the kids events in the last few months!! God has definitely provided beyond what we could have ever imagined for ourselves!!

Life is hard whether it’s medical, financial, relationships or all of the above! But I always said from the beginning when I was diagnosed with fibrosing mediastinitis in 2002, from when I got my first set of SVC stents in 2007, from when I was diagnosed with pulmonary arterial hypertension and congestive heart failure in 2015 and got stents in my pulmonary arteries…before 30 angioplasties…I am going through all of it so that I can continue to live this life the Lord has called me to live! Am I usually in pain? Yes! Am I overwhelmed and tired from the health junk? Absolutely!!! Do I stop enjoying life and sit on the sidelines?? No way, at least not until my body won’t allow it!

I still have frustration over what this disease has taken and continues to take from me physically but that’s just one aspect of my life. The Lord has been so kind to me not just with all of the good stuff, but with the hard stuff as well and I am extremely grateful that He continues to give me opportunities where I can lean in to Him and be an example of His loving mercy and Grace.


Thanks to all of you for your support! The Lord has provided so much comfort through your prayers and messages of encouragement to me over the years! I truly appreciate all of you!!

Is this what healthy feels like?

I had my appointment in Iowa City almost two weeks ago and first of all I just want to say to all of you nurses out there….you matter!! There is a story behind this picture…

…but all I am going to say about it is that I am so extremely thankful to still have one nurse on my team that has been with me from the very beginning of my health journey and it is nurses like her that make these really hard circumstances…a little more bearable! A cute husband helps too😉

As usual, I was prepped for surgery…

…and as suspected, my stents were closed so the doctor did do angioplasty to open them back up. It sounds like he used a couple of different sizes of balloons and was able to open all of my stents back up anywhere from 60-90% so we were thrilled with the results and will try to push my next procedure back to six months instead of two or three months!!

Recovery seems to be going well and I have had several people point out what a difference they have noticed in me this time around compared to my angioplasty two months ago that didn’t seem to help my symptoms at all. And after a few months of not being able to wear my wedding ring, I was finally able to slide it back on my finger again!

The last few months have been extremely stressful emotionally and physically with all of my fm symptoms which also makes it harder to manage my blood sugars…so on top of another angioplasty, I also got a new insulin pump along with a continued glucose monitor…

I have been very hesitant to try something new but I figured now that my stents are open again, why not get a fresh start on my blood sugars as well?! I have been a type 1 diabetic since I was 17 and for those of you who do not know much about diabetes or all of the technology, that means my body does not produce insulin but now I insert a monitor in to my stomach that constantly reads my blood sugars and communicates with my insulin pump…

If my sugars start to go higher than my set blood sugar levels then the pump will kick in and deliver more insulin. If my blood sugar starts to drop too low, the insulin pump will stop delivering insulin. I was ecstatic to see an instant improvement from switching. I mean this thing is amazing and works like a real pancreas! I went from sugars in the 200-300’s the last few months which is really bad…

…to being in my target range 89% of the time within a 24 hour period…

With it being just under two weeks since my angioplasty and getting on this new insulin pump, I am feeling pretty good! I have been able to keep up with my kids as far as our school schedule goes and I even started back up on my morning exercise routine. I still get tired and need to rest throughout the day or still battle some puffiness and chest pressure on occasion but overall I am so thankful to have minimized some of the fm symptoms along with healthier blood sugar levels again! Yes I have more devices and tubing all over my body but dang!! I forgot how good it feels…to feel healthy!!

While I consider this all to be great news, I still have so many family and friends shake their heads and look at me asking how do I keep doing this especially with a smile on my face? How do I consider this good news when I know it’s not a cure and I will have to have this procedure all over again? Well, first off, I am not always smiling but I do always keep pushing forward because that’s the only option I choose to have…

The Lord has used my health as an opportunity not only for me to know Him better but for my kids to know Him too. I wasn’t making Him a priority in my life so I definitely wasn’t making Him a priority in their lives…but when you finally realize God’s got a hold of you and your kids then you can always find something good in every day!

Love is in the shoes #RareDiseaseDay2022

With no obligations to be anywhere this past weekend, my husband and I were finally able to get caught up on a few things around the house. He was doing yard work and cleaning up his shop while I was inside working on some much needed organizing! I saw Tim over by the barn as I glanced out the window so I went out to see how he was doing and immediately recognized just how beautiful it was outside. I approached Tim and again pointed out the warmer weather and no wind made for a perfect winter day. He agreed and as I continued basking in the beauty of the sunshine…I somehow managed to slip on a piece of ice hidden under the snow…and I fell hard!!

And just like that, my admiration of God’s beauty around me changed in the instant my circumstances did and as I struggled to sit back up I mumbled under my breath “Yep…isn’t this how life is?! Just when you think it’s finally getting better, it knocks you back down again.” My knee was throbbing, my wrist was stinging and while I had not hit my head, the sudden pounding just from the jolt of my fall was excruciating. I was more upset though over the frustration of my clumsiness! Why don’t I pay more attention to what I am doing?? How did I not see that huge spot of ice peaking out from the snow I was standing on?

I looked up at Tim and the poor man was frozen with a look of confusion on his face. First off, I think he was trying to figure out what just happened because I hadn’t even been walking anymore and was just standing there…and I fell!!! Second, I don’t think he knew if he should laugh or come rushing over to help me back up but he did come over to extend a hand. That cute smirk started to creep across his face and he says to me “let’s stay positive babe.” I started laughing and replied “yep, today is a beautiful day.” Leah had walked out just in time to snap a couple of pictures haha!

Tim helped brushed me off and then we carried on with the rest of our day but I couldn’t help but think of this verse…not only spiritually but physically haha.

While I was still dealing with a headache, our Sunday was busy and I hadn’t even thought about that fall until I realized it was the day before Rare Disease Day and I hadn’t even considered writing a blog or sharing my story for awareness.

As I was struggling to write something, I justified that my health has not been the best since last July so I would plan to just skip sharing my story today and I would be more committed to my fm family in the upcoming year. I had to have angioplasty back in July, October and January to open my SVC stents back up and now I go again at the end of March. Needless to say, all of these angioplasties have been exhausting and emotional due to the fact that my stents are no longer staying open for more than a few months at a time anymore!

And just like my fall, it made me realize how a sudden jolt of suffering can so easily hinder my vision of all else that is good if I am not grounded in the one who Holds on to me.

I never imagined that a day in February would become so near and dear to me. Not Valentine’s Day but the last day in February, Rare Disease Day. A day where my husband randomly buys me a pair of zebra print shoes because he too knows how important this day is….love really is in the little things💕

A day where I come together with other people all around the world who are struggling to find the right diagnosis or any type of treatment…sharing our stories to anyone who will listen with the hope of shedding some sort of light on our diseases.

I have been involved with Rare Disease Day at our Capitol a few different times in the past but I stumbled across this speech from seven years ago when Sandy Salmon, our Iowa House of Representative, shared my story while they were in session in hopes of bringing more awareness to Rare Disease Day. I am extremely grateful for the love and support I get from our local community. There are people willing to listen…if we are willing to share.

I am also thankful for so many of you who continue to reach out to me with questions or to simply introduce yourselves and share your story with me as well! You are the reason I will continue to pray for our fm family and share my story alongside with the rest of you in hopes of bringing awareness and a cure to Fibrosing Mediastinitis. Alone we are rare, together we are strong💕💕

Here’s to another year

I decided to push my procedure back from December 27th until January 14th, the next available date, so that I could enjoy the holiday with my family. I assured Tim and my doctors that I had minimal symptoms and overall felt okay! My husband doesn’t get much vacation time for work but they do shut down over Christmas so we decided to head down to Gulf Shores to bring in the new year and we were blessed with beautiful weather…

The water was perfect!
Spent one day over in Florida seeing grandma and grandpa! Kids took a quick dip in their heated pool!
Faith, family…and the beach!
Eating at the Hangout with some pretty awesome views!
We did the Polar Plunge on New Year’s Day…at almost 80 degrees haha! Soooo fun with all four of us holding hands and running in to the Gulf! There were a lot of people so we stayed off to the side so the kids wouldn’t get run over…then dad runs us over🤣
Had a blast doing the plunge!
Mightier than the waves is His love for us

Once home, we took care of some odds and ends and the kids and I did a little bit of school…

They were doing school work then set down their glasses and asked me for a “refill”! I think we’ve been traveling too much 😜

Finally it was time for my procedure. Grandpa and grandma picked the kids up Thursday night then Tim and I took off early the next morning. Some things never change…

He makes me laugh!

I was so relieved to have some of my regular nurses and doctor this time! I was prepped for surgery and before I knew it they were wheeling me back to the operating room! Just as I’ve always described before…I was moved over to a long thin table and covered with warm blankets. Meds were given and even though this was my 28th angioplasty, it never gets easier! My stents ended up being completely closed so this time took a little longer to get them back open. While I have to stay awake during the procedure, I only remember bits and pieces but the nurse did have to wipe away my tears as my doctor informed me that I needed to come back in two months for another venogram and angio.

Two months…only eight weeks! Definitely not the news I wanted to hear but in that moment, I was just glad to see Tim in the recovery room! And knowing he was next to me….put me at ease and I was able to get some rest!

I was able to leave within a couple of hours and couldn’t wait to get in to my own bed.

I don’t know! Everything is just crazy right now! While our main objective has always been to do the least amount of intervention as possible…now our main objective is to do more intervention to keep my stents from closing all the way. The doctor who did my procedure back in October suggested maybe needing new stents but my doctor said we have already done stents inside of stents and I have six in one area so he did not feel this would be a good option. It’s like layers and if you keep adding layers, eventually the area gets more narrow so it would basically defeat our purpose. I am hopeful that in two months the stents will still be open and we can start pushing my appointments back again!

Either way, it is what it is and I have been slowly recovering and enjoying life with my family…even if it needs to be from the sidelines for a few days..

Finally enough snow to play in!

I am thankful that the Lord is still providing wisdom to my doctors in order for them to figure out the most beneficial ways to intervene!


Hope you all are having a great start to the new year and I will plan to update you after March 22nd!

Who was I putting my trust in…

Well…I didn’t quite make a year! I had angioplasty to open my stents up back in June but by the end of September I started to notice symptoms again. At first I put it off as a cold or allergies but as the days went on, symptoms began to intensify. First the fullness in my head, followed by swelling in the face and legs. After a short hike with the kids…

Asher pointed out that it looked like my feet had baseballs in them because I don’t always swell this bad!!

My face had also started to get puffy and the shortness of breath with fatigue kicked in. I assumed that my hypertension was getting worse but I tried to push on through the days until that horrid chest pain kicked in. I also had extreme pressure in my neck. I was feeling absolutely miserable so I decided to call Iowa City. I discovered that my regular interventional radiologist was back in the country so I was very happy when it was him who set me up with an appointment for another venogram and possible angioplasty.

Within two weeks Tim and I were back in Iowa City for another procedure.

We snagged a quick selfie before I was taken back to get prepped while he was stuck to hang out in the waiting room.

Nothing went the way I expected….I did not know any of the nurses, my doctor did not do the procedure and they drew up tons of blood work to the point the nurse was squeezing my upper arm in order to get enough blood to fill all the vials.

When I had shared with family and friends that I had to come in for yet another procedure only four months after my last one I was quick to follow up with “it’s fine! My regular doctor is back, so it’s fine! God is good!” So during this entire mess…I chuckled and was like “God why did you let me praise you for my doctor when you knew he wouldn’t be doing my procedure? When you knew this entire appointment was going to be absolutely confusing and overwhelming for me?” I then shot Tim a quick message to let him know I was being wheeled back to the operating room…

And once again…I knew nobody. I was reminded to breathe on several occasions and was instructed to hold my breath for certain images they were trying to get throughout the procedure. Turns out all three of my left stents were 100% blocked and my right stents were 50% blocked. The procedure took longer than normal as this is the first time any of my SVC stents have completely closed since getting them. After two hours of keeping my leg flat in recovery, I was released…in a wheelchair. I pointed out to the nurse that I never use a wheelchair but she had said I might still feel groggy from the medicine and insisted. As I got in to the wheelchair I looked at Tim and I could tell he knew what I was thinking…

Just get me around the corner and then I can walk!

I absolutely love this man and couldn’t help but giggle at some of the scenarios I get him in to!

I had been extremely overwhelmed by the way the whole day had played out and Tim could tell so there was a lot of silence on our drive home. In the midst of tears, however, the Lord blessed us with an amazing sunset…

and I was able to thank Him for providing me with a doctor who was able to open my stents back up.

Once home, the recovery seemed to be a little harder on me this time and by the third day I found myself withdrawing from everyone! I wasn’t answering my mom’s calls and I was keeping messages to friends short…if I even responded at all. My chest was pounding and it hurt to breathe. My back had obviously been agitated and I was no longer able to walk without being in pain. My oxygen wasn’t going above 90 and my sugars were completely out of whack…

I sent my favorite meme to Tim, a meme I send as a joke when I am not doing well physically…

While I laughed it off to Tim, I was crying on the inside and he sensed that. My pain was so intense that it took me back to when I was first diagnosed. I bounced from bed to couch tossing and turning, trying to position myself just right so that I could breathe with a little less pain. As I played the events over in my head I again realized that I seemed to be putting more trust in my regular doctor than I was putting in God. Because if I truly was giving God the glory then it should not matter which doctor I see…God is going to provide who I need and what I need…when I need it.

It’s now been over a week since my procedure and I am finally starting to feel life back in this old body of mine! I am so thankful that I continue to have these opportunities…as hard as they might be…to re-examine exactly where my heart is. I am grateful for God’s mercy as He hears my cries and wraps his love around me through people like you who send me messages of encouragement and through my church family who provides meals and prayers and love for my kiddos. I am also thankful for those of you who truly understand the reason why I share my story with you! I have said this from day one, I do not share looking for pity but I share because I want you to know you are not alone! I want God to use my story to encourage you just like some of your stories have encouraged me…

After talking with my doctor, my disease does not seem to be progressing which I am extremely thankful for but there is a chance the stents just aren’t holding up like they used to so I may need to get new ones. I am scheduled for another venogram with possible angioplasty in December…two days after my birthday.

Until then, I am just taking it one day at a time and we will see what December brings…or maybe January after we get back home from our holiday vacay.😉

Hope you all are staying healthy and can enjoy the holiday season with family and friends!

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!


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!