Ready for the holidays!

Well…I made it through another angioplasty! I tried skimming through my notes of all my doctor appointments in Iowa City and this looks to be about my 13th angio since 2013!! That is crazy!!

Anyway, we arrived at the hospital and when I walked in I was happy to see familiar faces! It seems like once in awhile I will get a whole new team of techs and nurses but some of the old gang were there this time! They always greet me with enthusiasm yet sadness saying “you’re back again” yet they are excited to hear about my life and especially how our kids have been doing! They also question if I’m working on a second book yet haha.

I got prepped for surgery and then we waited.

Usually anxiety kicks in once I’m hooked up to IVs and have so many wires attached to me. It’s when reality sets in that I will always have these procedures…a temporary fix to keeping me alive, yet nothing that cures me. Since finding out I was going to have this procedure last Thursday though…the Lord just bombarded me with comfort through so many of my family, friends and pastors praying for us. We also heard a great sermon on Sunday regarding comfort from Isaiah…

Psalms 34 readings in my bsf bible study and my daily devotion the morning of my surgery!

I felt God’s presence so strongly this time that I was able to laugh with the nurses and not get irritated by the slightest of things! I didn’t even give Tim any kind of “look” when the nurse was going to put my IV in a different spot than normal haha. I also gave my anesthesiologist Luke, a hard time when he came in and said “long time no see”. I told him I had been getting this done every five months recently so didn’t know what he was talking about. He apologized and said he’s obviously been slacking and taking too much time off.😜

Luke has been on my team since receiving my very first set of stents back in 2007, I think he was just an intern at the time but not for sure…either way, he was so young and just getting started in his profession! The relationships that I build with all of my nurses and doctors and technicians are so amazing and help all of these procedures to be a little more less stressful!

I did, however, catch the look of concern on my husband’s face while I was waiting to go back, a look I see at every procedure…and as much as I love my husband…I hate this look!!

He usually keeps the atmosphere light with his stupid jokes because he knows I’m nervous but for some reason, this time he struggled. I think the fact that Christmas is just around the corner made him concerned because we know the risks involved with any surgery, especially since I’ve had so many of these procedures done…and to do it right before Christmas.

And my heart aches more for him because he has to sit and wait. Not knowing if everything is okay until the doctor comes out to inform him of how I did. And then to wait and hear if the procedure was even successful. I know he just wishes he could fix me so that I didn’t have to go through this anymore. My husband is passionate for those he loves and it tears my heart to see him like this…the concern I cause him!

Once I was back to the surgical room, I had a couple of new techs who introduced themselves. They were very thorough in what they were doing to me as they stretched out my arms and began covering my entire arms with that terribly ice cold sterile soap. As they were apologizing for it being so cold, I heard another familiar voice say, “don’t worry about her, this isn’t Rebecca’s first rodeo” and I couldn’t help but smile. Ryan, a tech who is almost always in the room every time I have these procedures joked that I had been here even longer than he had. Once the tarp was in a tent like position over my head it was go time.

The meds kicked in but I still felt a tremendous amount of pressure from all the ballooning they did to open the stents back up. I giggled a couple of times as I felt the catheter move through different areas of my arms and sometimes I fought back tears from the intense pressure in my chest. I resorted to wearing oxygen again, something I normally didn’t have to worry about before, but the last few procedures, it has been required. Another reminder that my body just isn’t as strong as it once was. It seemed like this procedure had taken a lot longer…and it had.

I was wheeled back out to the recovery room where the nurse asked me if I wanted a meal. I always get a little nauseous after these procedures so I simply requested some crackers and a diet sprite. He joked if he should get my husband first or the snacks and I said “well, I am pretty thirsty” haha! The nurse returned with my crackers, pop…and my husband all at the same time😜

Finally the doctor came in and visited with us about the procedure. Apparently my scans had only shown the left stents to be closing but once they got in, my left SVC stents were closed 90% and my right stents were closed 80%!! I was thankful I at least had a reason for feeling so lousy this past few months!!!

Instead of six months, they would now like to have me start coming back every three months for ct scans and possible angio so we did discuss if I will ever get to the point where they say the angioplasties are not worth the risk anymore due to the stents closing so frequently.

The doctor did point out that was part of the reason they struggled so much this procedure. He said my arteries in my arms are pretty much shot from all the angioplasty I have had, however, he does feel that we should do whatever we can to make sure and keep the stents open and reported “we know what will happen if they stay closed”. For this reason, he said they plan to start going through the groin. Ugh!! You all know how much I do not like that haha!

This time I had to stay two hours in recovery and I was really getting anxious to get out of there! I was able to talk the nurse into letting me leave five minutes earlier is all haha. He told me they had done a lot of work and I had been given a lot of medication and suggested I take a wheelchair to my car. I got up with my coat, told him I had to get my steps in then he shook his head saying he didn’t think those devices were very adequate and pointed out how stubborn I was. We wished each other a Merry Christmas and then Tim and I were on our way home!!

I couldn’t help but observe my colorful arms with so many incisions on the way home.

Once home, I hung out with the kids a little bit to hear about their days then Tim took them to church and I went to bed. I noticed that one of my incision sites had started bleeding but thankfully it stopped and I did not have to go back in to the hospital!

I have been able to notice relief in some of my symptoms already but my arms and chest are still sore from them doing so much digging! I stayed in bed all day and then forced myself to get moving. Our town had Christmas on Main which we do every year, where the downtown businesses decorate their windows and then there are fun activities, snacks and hot chocolate!

And this year…we got in line early to actually do the trolley ride!!

The kids had a lot of fun doing some of the activities that were provided…

And of course eating some goodies while checking everything out downtown…

It was a beautiful night for a walk and I felt pretty good getting some fresh air. I was definitely exhausted by the time we got home and was able to go straight to bed!

But, the whole point of opening my stents, every few months if necessary, is to be able to keep doing things…and I was not going to miss one of our family traditions!!

I love my family and this beautiful life more than enough to do what I have to do to keep living it!

I just need to get through my eye injection on Monday and then I will be all fixed up to celebrate the holidays! Thank you all for your continued support!!

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Just because you make a wrong turn doesn’t mean you have to change your destination

I’ve had a lot of routine appointments in between Iowa City, my diabetes and eye injections but after this week I figured I would touch base with you all!

First off, yep, still getting injections in my left eye every five weeks and still not a fan of them. My last appointment actually consisted of two shots, one in my eye and one just below my eyelid. Apparently I had a lot more swelling and fluid so he wanted to hit it hard with a steroid injection on top of my regular injection to hopefully get some control on the situation before any vision loss occurs. My eye doctor stressed the importance of being “proactive not reactive” and that statement was enough for me to be compliant and not look for an excuse not to get the shots haha!

Then Tuesday was the six week checkup for my diabetes and lab work.

Wednesday I was in Iowa City for my routine ct scan of the chest to look at my SVC and pulmonary artery stents. The doctor concluded that after discussing my present symptoms and reviewing the scans, that I would need to have angioplasty again to open up the SVC stents.

Friday I had another ct scan except this time of my back. I have been having some pain in my lower back and my right foot has been getting numb for the last several months again so I will meet up with my surgeon in January to discuss my results and options. Praying praying PRAYING that whatever is causing this issue will not require surgery!

Tomorrow I have to go do lab work again for my upcoming procedure on Wednesday in Iowa City…then the following Monday back for my eye injection. Welcome to my world!

Crazy right?! When I have to see so many doctors every 5- 6 weeks or every few months…a lot of my weeks are like this!!

Now to the reason I’m blogging…my Iowa City report.

I was on my way to my appointment in Iowa City when I inadvertently took a wrong turn as if I was going to Cedar Falls for an appointment. I kind of grumbled and rolled my eyes at my unnecessary error. In fact, I was actually pretty frustrated with myself. But, I turned around at the next intersection and got back on the road I needed to be on.

Then, right before I got to the hospital exit there was a horrible crash on the other side of the interstate involving what looked to be four or five cars. Sirens were blaring, police and fire trucks and ambulances all rushing to the scene. It was over two miles of traffic backed up on the interstate and on exit ramps because of this accident. There were people standing by the crumpled up cars so hopefully that meant no serious injuries but regardless, they were probably pretty shaken up.

I got to the hospital and once I was checked in they put an IV in and I waited to be called back for my test.

Once back to the testing area, they hooked me up for an ekg to be completed during the scan as well. After about 25 minutes I was done!

I then met my interventional radiologist along with a med student and we reviewed that it had only been five months since they last opened up my stents. We went over my current symptoms…shortness of breath, chest pressure and a pain that shoots to my back below my shoulder blade, brain feeling fried and foggy…not to mention that darn fatigue!!! All my usual symptoms yet some of them have become a lot more intense recently.

They began reviewing my scans and I could tell right away that something was up. The doctor asked me if I had any lifestyle changes over the last few months and I informed him the only thing I could think of was that I was trying to be more active. He agreed that was a good thing for me to do and both he and the med student continued to investigate my current scan and the scan I had done five months ago. My doctor then pointed to the screen and asked the medical student “do you see that?” which the student replied “it’s like they’re getting organized”.

Getting organized?? What??? Haha! I’ve been doing these tests for 16 years and have never heard my disease described like that!

Are they lining up for battle?! Because seriously, I felt like I was in a sci-fi movie all of a sudden! You know, where the intense scientists discover that their non life blob research stuff is actually alive and smarter and building up to attack the world! Okay sorry…I have quite the imagination when Tim is not there to help me stay focused on what the doctors are saying.

I finally interrupted their conversation and asked if something was wrong and the doctor explained that my scans looked different than the last ones.

He first informed me that I would indeed need to get my SVC stents open. But then he went on to say that the masses are more condensed as he squeezed his hand to make a fist and finished his sentence with…”and that is when the problems occur with the masses crushing and damaging your organs, veins and arteries”.

I took a deep breath because I am fully aware that my illness can flare up so this should not be such a surprise to me. I refused to cry this time. We scheduled my angioplasty and then I was on my way.

And for some reason I started thinking about my drive here and how life…and my faith…truly are like one big road trip.

I woke up this morning and knew where I wanted to go…my destination was the hospital. I know how to get there but I made a wrong turn. However, I didn’t keep driving in the wrong direction or just stop and say forget it and not even attempt to get to the hospital. I mean…just because I made a wrong turn didn’t mean the hospital wasn’t still there.

Instead, I realized I made a mistake and knew the road I was on would not get me where I intended to go. But, I also understood that it was still possible for me to get to the hospital so…I stopped going in the direction I was headed, turned around and got back on the road I needed to be on.

And the car crash I had seen! This news of my illness progressing was my “crash”. Most likely the individuals involved were going about their normal business…obviously not expecting to get into an accident. Just like I was coming here for my routine checkup, not expecting to hear my fm was active again.

And I couldn’t help but think about my relationship with Jesus. I believe God sent his son Jesus to die on the cross for me and I believe my final destination is heaven. But I sure have made a lot of mistakes in my life…and I still mess up! I also know that just because I mess up, even when I think it is too big to be forgiven, that the Lord does forgive me and gets me back on the right path. He doesn’t just give up on me.

Instead, I acknowledge Him and what He is capable of because I know I can not get to my final destination without Him! I am so thankful for God’s never ending love….and He is what brings me comfort through my “crashes” and “wrong turns” in this crazy journey we call life.

So when my mom texted me because she had not heard from me after my appointment…

I was able to call her back without a tear shed and say “yes Mom….I am okay”.

My angioplasty is this Wednesday and when I am feeling halfway decent I will try to give a quick update as to how my procedure went!!

Thank you all for your continued prayers and messages and support!

Pulmonary update

Pretty crazy how many of you pay such close attention to what I write in my blog and just don’t scroll through to look at the pictures!!😜 Quite a few of you have messaged asking me about my follow up that I briefly mentioned in my last blog so figured I had better do a quick update!

I went in the other week for my routine pulmonary functioning tests as well as the six minute walk test….this time they had me use albuterol which I always enjoy…not really!

The results were bad…as bad as six months ago…but not worse…so consistently bad…which means that’s good for me!! Haha! I have had a tremendous about of chest pressure and pain, the sharp pain that shoots through the front of my chest to the underneath of my should blade. Shortness of breath and extreme fatigue have been challenging as well! I had also developed a nasty cough but thankfully it only lasted a few days and of course I used the excuse that maybe this is why I could have bombed my breathing tests, but my symptoms didn’t improve once I started feeling better.

So the doctor did have concerns of narrowing stents so I will see my heart doctor next month to reevaluate. But again, we’ve already decided that going in to open the pulmonary artery stents might not be worth the risk, especially since they narrowed so quickly after I first got them and then narrowed fairly quickly again after they tried opening them for a second time.

Orrrrr my symptoms could also be an indicator that my SVC stents might be closed again, which would be a bummer because they just opened them up back in July. BUT at least that is still an option and would provide some relief.

I did tell my doctor about our vacation and the amount of hiking I had done which he seemed pretty impressed that I had survived…that’s my interpretation haha. I mentioned to him that I definitely had some intense symptoms going on during our mountain stay which led to a pretty good conversation regarding oxygen. I apparently should have had it when I went hiking especially because of how high we were! And if we go to Colorado I definitely need to have it with me and was encouraged to call him! Oops, who knew?!

This led in to discussing whether or not I should be using oxygen at home. The doctor went on to say that I am very active for someone who has this disease and while I still have plenty of symptoms…I’ve done pretty well at fighting them. He explained that in a way my body is like a football player in training…extremely hard, to drop their oxygen so that their bodies can build the stamina to function and play ball in that condition…something like that…any of you coaches or football players might understand but not sure how many followers I have of them! Haha!

Basically, even though I have pulmonary arterial hypertension and some minor damage to my heart, my body is still fighting and the damage has not gotten worse from the activity that I am doing. It was decided that as long as my heart stays stable, I will not be put on oxygen…specific prayer for me right there please!!

It sure is hard to make it through some of the simple activities during the day, with fatigue being one of the hardest challenges but I am doing it. And if I get put on oxygen now, my body won’t have to fight as hard and I will lose some strength that I am slowly gaining. So of course I want my body to be as strong as possible…which means I just keep pushing on!

Other than that, nothing new to report!! I get my eye injection Friday…blahh!!! I go to Iowa City the following week for a second opinion then cardiology a few weeks after that!!

Thank you guys for always checking up on me! You have no idea how much a random “thinking of you” “praying for you” or even just a ” hey, how’s it going today” can mean!! Have a great week!

Taking My Kids To The Ocean ✔️

We just got back from our first vacation in almost five years and it was AMAZING! I am about ready to bombard you with pictures…really…I’m not joking…it’s a lot! Because as much as I enjoy sharing my life and what it’s like living with a rare disease, this is ultimately for my kids to look back on some day so feel free to skip this blog if need be haha!

But seriously…the week could not have gone any better because everything about it was perfect! We started out in the Smoky Mountains over Labor Day weekend and then stayed in South Carolina! We were very fortunate to get out of our beach resort when we did because just a few days after we left, the towns were asking everyone to evacuate due to the hurricane moving in. I cannot even begin to imagine the traffic we would have had to deal with if we had stayed just a couple of days longer!

This was kind of a last minute trip…we tend to make all of our plans last minute because of cows and my health…both of which have not been the greatest lately. I did have a follow up after we returned home so I will update on that in another blog!

But back to vacation!!!!! Tim and I went back and forth for weeks about planning a vacation and the fact that Skyler graduated, we knew this might be our last chance to have all four kids home for a big family trip.

I was very fortunate that my family did a lot of traveling when I was growing up. My dad worked his butt off at a job he wasn’t thrilled about and our family always did one big summer vacation every year. My parents took us on two week trips and we made it to almost ever state in the US. The only places I have not been to are Hawaii, California, Oregon and Washington…oh and Alaska! But those are all on my list to see…and I WILL see them!😉

I love talking with my parents, brother and sister about our vacations because we have a lot of fun and crazy memories!! This is why traveling was something I always wanted to do with my own kids someday! And the fact that I fell in love with the ocean on our trips growing up, taking my kids to see it was at the top of my “Memories in the Making” list. Yes…that is the name of my bucket list!

Tim, however, has not been to the ocean and really had no interest in going. He didn’t understand my passion for it! “It’s just all water, no new scenery” he said and preferred going to the mountains. I started researching and found a nice little cabin in the Smoky Mountains and joked with Tim that we could stay in the cabin over the weekend and then go to a townhouse that I had also found right on the beach near Charleston, South Carolina. Tim’s response…”go for it.” I could not believe he had just agreed to this but I didn’t argue and now we had only three weeks to line everything up!

It worked out perfect that both places we wanted to stay at were available and seriously, they were available only for the dates we needed! Tim had a pretty cool coworker who was willing to cover chores while we were gone and I had just done an eye injection and would not have any appointments until we got back! Plus, it was Labor Day weekend so kids would only miss four days of school yet we could be gone for 10 days with weekends!! Family and friends were also more than willing to take care of our animals at home so now all we had to do was tell the kids!!

We gave Skyler the dates so that she could get work off then decided to wait and tell the rest of the kids on the same day that we would be leaving!! Thankfully it was a half day at school so they had plenty of time to pack! I will warn you right now…my enthusiasm was through the roof so I had been acting like a pretty big dork! Tim and I have had some tremendous stress over the last few months and the fact that he agreed to take a vacation was huge!!!

ANDDD the fact that I was going to be fulfilling one of my “memories to be made” moments, overwhelmed me. I was really taking my kids to see the ocean!!!

So back to me being a dork…I decided that I would get out all of the food and our suitcases that I had been hiding and put them in the living room for the kids to see when they got home from school. And yep…I put on goggles and sat right in the middle of all of our supplies! I figured if anything, the kids would at least remember me in my goggles…sooooo not flattering haha! Skyler came downstairs and very hesitantly asked me what I was doing. She rolled her eyes and left the room…only to come back a few minutes later…

That’s my girl!!! Haha! We both could not remember the last time we had laughed so hard until we realized we had been sitting there almost 30 minutes in our goggles and the kids weren’t even going to be home for another half hour!!

Finally, the bus was here and after the kids stopped staring at us with such confusing yet concerned looks on their faces, we confessed that they better pack their bags because we were going on vacation!!! Needless to say, their reactions were priceless!!

Tim worked all day, did chores and got things lined up then we took off at midnight when Skyler got home from work!

The kids seriously all slept from about 1am until 7:30am and we only made three stops during the 15 hour drive to our cabin. We could not believe how smooth the drive had gone but were still on guard because it had went way too well! Haha! The location and cabin were perfect…

with such breathtaking views…

The cabin had fun games for the kids to play….

We were able to drive through the mountains and Cades Cove scenic loop…

…and do some hiking! I was not going to share some of these next photos because my SVC syndrome really kicked into high gear and I had symptoms pretty much the entire time we were in the mountains but hey…I can say I hiked in the Smokys, a little bit of the Appalachian Trail and up to Clingmans Dome, the highest point in Tennessee. The .5 mile hike up to the dome was extremely steep but I did it and I am alive so I’m sharing pictures even if my face and eyes are puffy!!

One of my favorites of the boys…

I’m just taking a breather but there were quite a few people huffin and puffin so I’d say I did pretty dang good for a one lunger!!😉

So after a great weekend in the mountains we got up early on Monday and headed to the beach!! At this point we were all wishing we could’ve stayed in the mountains longer…until the ocean came in to view!! And Tim immediately understood my passion for it!

Our townhouse was absolutely amazing and right on the beach! And again, the reaction from our kids…smiles and laughter as they all went running on to the beach was a moment that will live in my heart always!

We got settled in to our resort for the evening then the next day we took a ferry over to Fort Sumter…

and then we toured the USS Yorktown at Patriots Point! The whole experience was very surreal and emotional knowing the significance of what had taken place right where we had been standing.

Nathan claimed his plane since it had his initials!

We were surprised at how few people we had to deal with so we were able to take our time and not worry about crowds. Walking for four hours up and down the decks on the Yorktown about did me in as well though haha, so it was nice to get back to our resort and relax just in time to catch the sunset!

And the sunrises were just as beautiful…Leah always joined me for my morning stroll along the beach to search for sea shells!

Then Wednesday we headed in to spend the day at Charleston and the kids did very well given the fact that we basically just walked around looking at old buildings!

Tim and I went back later in the evening to walk on the pier and stroll one more time through Battery Park!

Now that we had done the things we wanted to see while we were in the area…Thursday was beach day!!!! We hung out and got to see dolphins and even a jellyfish and stingray washed up on shore!!

Everyone thought that was pretty cool but Asher wasn’t too excited when he finally realized those things were in the same water we had been playing in! Haha! But the kids splashed around in the waves and we searched for even more sea shells then would catch our last sunset on the Atlantic Ocean before heading home in the morning.

In the morning, we caught one more sunrise, took one more family photo from our townhouse…and headed home! We could not have asked for a better vacation!!

Andddd my husband extended his vacation into Monday so that we could celebrate his birthday golfing!!! Haha, yep…Tim and I used to golf before we met each other but health and our hectic lifestyle prevented us from ever golfing again so after ten years of not playing, we grabbed our clubs and played golf for the first time together!!

Surprisingly we could both still hit the ball…

We were great competition for each other…

But since it was Tim’s birthday I let him win by five strokes!🙃 haha! Couldn’t have wrapped up our vacation any other better way!

It was an amazing 10 days of family time and much needed me and Tim time! And while so many of you have mentioned that our trip was well deserved, while I appreciate your comments…I have to admit I don’t feel we “deserved” it. So many others have more struggles and hardships so I don’t think our circumstances make us any more deserving than the next person.

We are extremely grateful though that the Lord blessed us with an opportunity to take this vacation and that the entire trip went so much better than we ever could have planned ourselves. Beautiful weather, no traffic, no crowds!! Some pretty precious moments were shared between brothers and sisters, not to mention reflection on our own relationship…just something about being removed from our environment really helped my husband and me to reconnect as a couple again and focus on what really is important in life.

Tim has had a rough couple of years since his brother passed away and even agreed with me one night while sitting on the beach that over the last few months he was shutting everything out and not participating in life! He talked about invites from friends that he had turned down. He had been pulling away from everything and everybody…including me. That lead to a much needed discussion between the two of us. He probably doesn’t understand how much that conversation meant to me but I will never forget his words in that moment.

Being able to watch him laugh and play with the kids in the waves…and to see him truly relaxed and flashing that sexy smile of his that caught my attention over 11 years ago…was nice, to say the least…because I haven’t seen it nearly as often as I would like to….but that is slowly changing and I am beginning to see it more and more each day!💕💕

And then of course, being able to experience something I didn’t know if I would ever be around long enough to experience…to watch my kids as they saw the ocean and experience so many great things for the first time…no words to describe it!! I teared up a lot throughout the entire trip, and even now, from being consumed with so much joy, emotion and just pure awe of how good God is!! This vacation was not well deserved, it was an amazing blessing that we will forever be grateful for!

Such a bundle of fun

I know, I know!! I’ve been pretty quiet on here lately and while I do appreciate all of the messages I continue to get from so many of you…it has been kind of nice not blogging every week! Don’t get me wrong, I enjoy keeping you guys updated and this is a great way to raise awareness or reach out for prayers and support but at the same time…it seems like when I blog so often, my illness becomes the center of my life…and the more I write…the more I acknowledge and dwell on just how much damage this disease is actually doing to my body Every. Single. Day. I don’t want to fall back in to that trap of focusing on what I can’t do instead of living for what I can do!!

As far as appointments go, I haven’t had any major ones since the last time I blogged. My arm continued to get extremely bruised after the angioplasty…

but thankfully after a couple of weeks it began to heal so I didn’t need to go back to the doctor!!

I also got another eye injection today…making it only 269 more shots in my eye to go…if I live to the age of 80!😜 I know so many of you have parents and aunts or uncles and grandpas and grandmas that do these injections but to me…it still sucks!! I’m only in my very early 40’s!!😉

Today my eye had more swelling so I am back down to returning every four weeks. I don’t know why but I just can’t seem to shake it off. The shots do irritate my eye and cause some pain as he injects the medicine…my eye is usually blood shot for about a week and for some reason I always have a headache after I am done. Today, he also hit a blood vessel so they said my eye will get worse before it gets better. I’ve heard that plenty of times before so I know what’s coming and I’ll spare you any pictures!!

I did ask how my right eye was and they said that still looked great, which I am very grateful for!! So, I guess as long as I have one good right eye and one good left lung…I should be okay!😬🤣

But today while I was sitting in the waiting room…with not such a happy heart…two ladies sitting hunched over, one in her wheelchair, one with her walker, probably in their 80’s, began talking about their injections. One lady was getting an injection for the first time so the other went on to comfort her by saying it gets more tolerable the more you have it done and explained she had been getting them for about two years. Of course I kind of rolled my eyes because if I am blessed enough to become that old I will have to tell people I’ve been getting them for 40 years!!

The bitterness I have towards these shots is hard for me to swallow. And it’s silly because I have been through how many angioplasties and surgeries…so many painful experiences, yet this eye injection…it’s enough to make me want to throw in the towel!! The thought of me getting shots in my eyeball every four to five weeks for the rest of my life…ugh! I’ve told Tim on a few different occasions that it’s been a good run and enough is enough! I’m going to stop all appointments and procedures that are just prolonging my life and we’re going to run away, travel and see how long I last! Haha! No worries…I go back to Iowa City in a couple of weeks for my heart.🙄

But then their conversation turned to them both expressing gratitude for a treatment that can help prevent vision loss. They both agreed that they would do whatever it takes to make sure they can keep playing cards!!

Yep!! CARDS!! And here I am grumbling!! I have four gorgeous children that I am able to watch grow up…and this morning I was so bitter that I couldn’t even appreciate the fact that these injections are having a tremendous positive impact on my vision!!!Okay God…point noted!😉

And speaking of angioplasties, I had a memory pop up on Facebook today that made me tear up…five years ago is when my health would drastically decline…I will never forget the conversation I had with Leah that day…something for just me and her to always keep in our hearts💕💕💕

Unfortunately while the new stents held up for a little bit, this is when I began to develop new symptoms and my disease would progress and attack with a vengeance. It was such a scary and dark time for me because I thought my masses were done growing…at least that’s what the doctors had said!! It came on so fast and the next few months to follow would be filled with testing and procedures and labs all with no answers…and so many mixed emotions. I was absolutely miserable physically and emotionally and I lost focus on the Lord! I became angry and bitter…pushing so many that I loved, away…wanting to give up!

I would eventually be diagnosed with pulmonary arterial hypertension, another rare disease…caused by my first rare disease. Also with a short prognosis averaging five years…but I’ve learned not to pay any attention to those numbers!😉

This is also when I began having issues with my eyes and would go through six laser surgeries before having to result to these injections. And in the midst of all of this…Tim’s brother would be diagnosed with cancer only a few months later.

Oh…and my back to back…back surgeries just a few years later too!!! The recovery time seemed like forever!! But again, thanks to Facebook, I can also be reminded of the little things worth celebrating…

So yeah!! Am I a bundle of joy or what?? The last few years of memories filled with painful and extremely hard…and never changing seasons.

At the same time, it is refreshing because every time I have hesitated to post or blog thinking it’s too depressing…too much detail…or too “real” for others to handle…someone will message and thank me for writing a post about how they feel. My blogs are shared by a lot of you because you have told me I have expressed what so many others with this disease experience and have wanted to say themselves. I figure if what I am writing makes people feel uncomfortable then maybe I am writing something that needs to be said! The only way we will raise awareness and have a chance for a cure or even better treatment options is if we share our stories…the good…and the ugly bad!

And the ugly bad that I never thought I would get through…well God brought me through it! All these struggles are constant reminders that He will get me through the next battle…even these nasty eye injections!

So after a fun filled day of Facebook memories, I am extremely thankful that our July this year has been a good one…actually our entire summer has been going well for the most part. While I still have plenty of symptoms to fight through, I am staying busy with the kids!! We’ve had Fourth of July celebrations, time spent with our entire families and a lot of pool time …

The six of us were also able to get away to Galena for a weekend and do a little shopping while checking out some hot air balloons!!

Don’t let them fool you…they really were having a lot of fun!!And don’t even get me started on school shopping…for ASHER!! Now that will be a depressing blog come fall!!😉😩😩

And then Leah and I walked in the parade for our local Waverly Heritage Days over the weekend!! It wore me out but these little activities mean so much to me, knowing that just a few short years ago, my health was preventing me from even walking across the room!!! Have I mentioned how good God is?!

Whewwww…that’s the quick “catch up” for you!!! We’ve been busy…and I have loved every second of it!!

So while the injections are crap and the Iowa City follow ups continue to lead to angioplasties and more procedures, I am so thankful for the life I am able to enjoy in between all of the not so fun stuff.

Life is hard guys!!! You all know that though! Health issues, relationship strains, financial burdens…just to name a few…but dang, look at all of the other things in your life between the bad junk and you just might realize how blessed you truly are!

Remember, there is always something to smile about…you just have to be focused on the right things!

Quick update

I finally made it back to Iowa City today for a follow up on my SVC stents! Due to the fact that they were narrowing four months ago and the fact that I have also been having some pretty intense symptoms recently, including that infamous cough…I had no doubt in my mind that I would be having angioplasty today.

I was right! The right stents in my SVC were 80% occluded while the stents in the left side of my SVC were 40% occluded…or blocked. I am very thankful that the doctors were able to open them back up!! This is great news!

When doing angioplasty and ballooning for my SVC stents, the doctors are able to go through my upper arms. If you ever look close enough, you would see a bunch of tiny little white scars throughout my upper arms from all of the times that I have had this procedure done. Unfortunately, I think we had some issues going on today! Here is my left arm after the procedure which doesn’t look too bad…

And then the right side…which is the most challenging side of my body due to having the most damage from the fm. Not sure what happened but obviously there was a struggle and I did feel quite a bit of pain throughout the procedure…

Needless to say…this is what my good report looks like!! Haha! I was able to get out of the hospital fairly quick and I did not get sick on the way home!

However, as the night goes on I am starting to feel downright awful. I’m experiencing bouts of nausea as well as coughing quite a bit along with some chest pressure and a headache. They did a lot of messing around in my chest today so I am really starting to feel it. Not to mention my arms burn with any little movement I make.

Anyway, that’s all I’ve got. I just wanted to provide a quick update since we have been getting a lot of messages tonight and my guess is, I will be even more sore and tired tomorrow so I will not be up to visiting or doing much of anything! I have a few rough days of recovery ahead of me but after that, I am looking forward to healing fast and seeing how much better I will feel now that my stents are open!

Thank you for all of your prayers and messages today! It means a lot knowing that we are surrounded by great family and friends who are willing to support us in anyway possible!💕

And now off to bed!

Graduation Day

Graduation day came with so many crazy emotions because…

18 years ago this beautiful little girl came into my life and turned my world completely upside down. Her sassy attitude started immediately with such high demands!

I had to run the vacuum in her bedroom to get her to sleep or take her for late night car rides to calm her down…even buckling her into her car seat and setting her on top of the dryer while it was running to keep her from crying!

At the age of two, Skye was so full of energy and just beginning to discover life…

But that was when I was diagnosed with my illness and given no more than 10 years to live. I remember like it was yesterday when I had my major surgery, a thoracotomy, that caused such tremendous pain. I remember sitting on the couch crying with every breath because the pain was too much to bear…just from breathing….yet crying even harder because my little girl came running to jump in my lap on so many occasions and my mom had to stop her every time.

As she got older…Skyler had a few health scares of her own her. She developed seizures and for some reason tremendous guilt overwhelmed me. Was this somehow my fault? Had I already failed this precious little girl as a mother?

Thankfully Skyler outgrew the seizures by the age of 7, so one day while partaking in our daily routine of her riding bike while I ran along next to her, crazy symptoms attacked me with a vengeance, preventing me from going any further. The disappointment on Skye’s face as we turned around to head back home will always be in the back of my mind. I will also never forget the fear inside me wondering if I WOULD make it back home.

From that day on, our lives would be consumed with tests and doctor appointments only to be told over and over and over again that I was dying and my priority needed to be that Skyler would be taken care of after I was gone. Doctors could not help me nor provide any glimpse of hope. I was going to be another statistic to this disease.

And at the graduation ceremony while I watched my little girl walk across that stage to get her diploma, my heart was so full of pride! She did it!!! She graduated from high school! One part of her story coming to an end and now on to new beginnings!

I was there to see it!!

And to freak her out by sneaking some kisses..

Of course my mind did kind of wander off as I stared at her sitting in her chair waiting for her name to be called. This could all be happening without me. This is what doctor after doctor told me I would not be around for!

And then I thought about all the times I wasted sleepless nights and tears over the what ifs of missing this, yet God knew all along that I would be here to celebrate with her!! And while I would love to say, “In your face doctors, I proved you wrong” I couldn’t help but feel a little guilt come over me as I thought, “is this what God is saying to me?” Seriously though, all this time I wasn’t sure I would be here for this day and I fought hard to be here, to see my little girl grow up…yet it wasn’t me who had the final say…it wasn’t even my fight that got me this far. This is all His will. God knows how many days we will be on this earth so he could easily be saying “in your face Becky, in your face doctors.” How sad that made me feel when I realized that I really hadn’t had complete trust in His plans for me after all.

But then my thoughts went back to my gorgeous daughter walking across that stage!

Skyler has seen more sickness and death and tragedy and sadness and heartbreak in her life…way too much and way more than any 18 year old should have to experience. But…like our Pastor Jim once said, while it’s difficult and we don’t want to experience or see any of our loved ones hurting or experiencing pain, sometimes it’s better to see that life isn’t so easy at an earlier age…that life on this earth is filled with hardship and sadness and disappointment…unfortunately that’s just the way this world is. BUT, our hope is in Jesus because an everlasting life with Him in heaven is filled with joy, no tears and no pain…

I am so sorry for things I did that affected Skyler…and I am sorry if there was ever a time in her life when she didn’t feel like I was present because of my own health. I am sorry that all she has ever known is a sick mom. But, I am not sorry for the fact that such hard circumstances have made her a stronger and more caring young woman. Skyler is amazingly strong…but I pray that she doesn’t let that strength and independence prevent her from allowing anyone in to her heart like I so often have! As many times as she may have cried, she also rose up above those sucky situations and showed the world that she couldn’t be broken so easily. As much as she has shed tears…she has shown off that gorgeous smile of hers…so much more!!! Nothing will break her as long as she remembers who she belongs to…so straighten that crown😘

I have so much love for her and will do whatever is necessary to make sure she never loses hope because of this tough old world…to make sure none of our kids do!! I am so unbelievably proud of the young lady she has become!

Ohhhhh trust me when I say I do not want to let her go but at the same time I am excited to see the plans God has in store for her and I am excited to see what the next chapter holds!

While we have had our share of arguments…mostly because she didn’t agree with my rules 😜…I will always love her unconditionally! I will love her just as much on the hard days as I do on the easy days! Nothing she does will EVER make me love her less!

No matter what my aprilskye…my hunnybunny😜…my sunshine…my Skyler Marie…you are loved!! Life is going to throw so many tough crappy obstacles at you but have faith and fight through the tough days…because those tough days often lead to so many more beautiful days! I hope you have seen this through me!

Only God knows what is coming your way so trust Him, thank Him, turn to Him for all your needs, believe in Him, love others like He loves you and always find something to smile about Skyler…no matter what!💕💕

Love you always and forever💕💕💕

Follow up

Had my follow up appointment on my eyes today and I was ecstatic when I found out no contrast was needed…just a quick simple scan of my eyes! Whoot whoot!! It’s crazy but for some reason I just don’t like getting an IV and contrast at the eye doctor!

Now I just had to wait to see the doctor and then I would be able to head over to my next appointment! And I was ahead of schedule so thought I would even get some quick shopping in for Easter!

Unfortunately, the excitement I had been experiencing was short lived as the doctor came in and explained to me that I had more leakage and swelling. However, unlike the previous issues I have had that resulted in six eye surgeries, this time the leakage was throughout my entire eye and not just in one area meaning…laser surgery would not be an option.

He went on to explain how I would now need routine eye injections…and just like that, it took every ounce of me to keep from bawling. I smiled and nodded as he explained to me that of course I was the most complicated scenario out of what was possible. He felt with my diabetes, pulmonary hypertension and all of my trauma I have had to my chest, that my eyes indeed were also lacking oxygen, resulting in the issues I am having. He continued with informing me that I would need injections every four weeks most likely…indefinitely. Guys…that was so hard for me to swallow!! As much as I have come to terms with indefinite angioplasty and stent stuff…I just couldn’t shake the thought of this eye junk for the rest of my life!

I was sent back to the waiting room until I was called back in to the operating room. And of course…a whole new experience…that I really wish was the first…and last. They suited me up with a mask, a cap and tilted me back in a chair.

The technician then explained what was going to take place starting with A LOT of eye drops!! Once tons of eye drops were in, she took a long q-tip and had to wipe the inside of my eyelid with it…60 seconds three different times. And yes…that was very uncomfortable! Then more eye drops and two syringes full of liquid stuff in my eye. She then put iodine over the entire eye area just in time for the doctor to come in and give the injection.

I will admit, the pinch felt pretty intense and I jerked and grabbed the handle of my seat. Once it was over he asked if I could see his hand and when I said yes, he said “see you in four weeks” and I was done!

I checked out, got to my car…and just cried! I cried because at the beginning of my appointment, when things seemed to be going so well, I had remembered to thank God for blessing me with an easy test! Yet not even 10 minutes later I was told I would need these awful injections for the rest of my life!! I cried because I just didn’t know why every part of my body had to be so broken. And I cried because in that moment I was selfish and had nothing to thank God for. I mean seriously…I had just thanked Him for an easy test and thought the worst was behind me for the day!

I did acknowledge that He knew what He was doing but in that moment…I didn’t care. He could have made those test results perfect and clear of any swelling but…He didn’t.

I went to my next appointment and pushed through that then got home and put on a brave face for the kids as I walked through the door. Everyone was able to buy the smile I flashed them except for Skye. She always knows when I’m not feeling well or when something is wrong.

I filled her in on how my appointment went and when I showed her my eye…

She exclaimed, “you have a hole in your eyeball”. The red spot is where I got the injection.

I went upstairs, hid in my room and after about 10 more minutes of crying I finally was able to recognize something to be thankful for…”thank you Lord for letting the doctors catch this soon enough to prevent any vision loss”.

I went back downstairs and watched the kids play outside for a bit, made supper and went on with the rest of my night.

So, that was my day! While it definitely wasn’t the news I wanted to hear, I am grateful that I have not had any loss in vision and I am grateful that there are chances for the doctors to help prevent vision loss!

I am also hopeful that this doctor could be wrong and the next time I go back in four weeks the swelling will be completely gone and no injections will be needed!

Living Life Rare

As many of you know, today is Rare Disease Day! There are approximately 7,000 rare diseases with no cures and very limited treatment options. 1 in 10 people are living with a rare disease, making that around 30 million people! We really are not so rare after all!

The last day of February is a day dedicated to raising awareness for rare diseases as well as giving individuals a chance to share their stories as to how living with a rare disease affects them and their families.

Of course I am one of the rare ones but unfortunately I was not able to make it to a Rare Disease Day event today so figured I would share my story again on a day that has come to mean so much to me!

My life has definitely not been easy. For me, living rare means chronic pain, pure exhaustion, biopsies, I’ve had a thoracotomy, eight stents in my chest, six eye surgeries, two back surgeries, female issue surgeries, never ending tests, scans, lab work, countless doctor appointments and a ridiculous amount of angioplasty procedures…all of which I will continue to go through on a routine basis for the rest of my life because there is no cure for Fibrosing Mediastinitis. I will always have symptoms…some days feeling symptom free…and other days those symptoms will keep me in bed all day.

But, in the midst of all of the testing and recovering and pain and fatigue…I have also found hope. Living rare also means trusting in God, developing more meaningful relationships with my loved ones, enjoying the little things, appreciating the many blessings in every day life that so many tend to overlook.

Living rare has in fact taught me how to live life…how to live in the moment and it has opened my eyes to what truly is important!!

And of course I can’t share my story without mentioning my husband who has been by my side through it all. I met Tim 10 days after I got my first set of stents. One doctor finally had helped me and told me to go live my life after so many other doctors had told me to make arrangements for my one daughter at the time because I was dying. Meeting Tim at that moment was not a coincidence.

I could not have gotten through the last several years without him. No matter what we have faced he has always been able to make me laugh through it all. So glad to be pushing through this crazy life with him…together!💕

So for Rare Disease Day, if you have 9 minutes to spare😜…I have attached a link for you to get a more intimate look into our rare, yet beautiful life. #godisgood #fightforacure

https://m.youtube.com/watch?v=vu5kebbfG-A

Short and Sour😜

Today I had my follow up appointment regarding my newly diagnosis of Raynaud phenomenon in Iowa City ….well, I thought that was the reason for seeing this vascular doctor today. Really though, everything seemed like a whirlwind and I’m not sure what’s going on.

Right away the vascular surgeon admitted to knowing nothing about Fibrosing Mediastinitis so I knew where this was going to lead to. It was like I didn’t even have a chance of him figuring things out for me. One comment of me saying I can walk about 20 minutes before my hands and feet get so numb and tingly that I have to stop walking, was enough for him to conclude I don’t need surgery and it’s not peripheral arterial disease??? Which, I never thought I did need surgery??? And I thought I had Raynaud phenomenon??? He immediately went on to say how I would benefit from seeing a different doctor….very few questions or discussion was had about the rest of my symptoms.

Even though I expect stuff like this to happen, because it happens a lot, I was still confused at how fast he was pushing me off to somebody else. I tried asking about the meds the ARNP in his office had offered to me the last time I was there but he said the meds probably wouldn’t be good to take because of my “other disease”. He said for instance, today my symptoms probably aren’t bad and I don’t want to be taking a lot of meds with my “other disease” because I might not have symptoms every day? But…isn’t the point of taking meds to stabilize and make every day symptom free?? Next thing, he mentioned me possibly having Vasculitis and referred me to a rheumatologist???

I was still confused by the referral and I know I shouldn’t have snipped but I did get in a little dig to the nurse that I should’ve just taken the meds when they offered them to me at my first visit.

My mother in law took me today due to the fact that Tim just started a new job and can’t get off work yet so I did try my best to behave! Haha. Honestly though, I’m not sure I will follow through with this referral and might just wait to talk with my regular lung and heart doctors next month. Because after today, I’m not sure what they think I’m dealing with now?? Way too many different diagnosis’ were thrown out at me today!?

But regardless of such a frustrating appointment…it was a beautiful day for a drive and I had some wonderful company between my mother in law and Asher! And wow…I’m pretty sure Asher wore himself out from talking the entire trip!😜💕

On the way home my mother in law had asked me what positives we could bring from this and oh boy…I instantly realized how Tim might feel when I’m trying to be optimistic with him while he’s working his 17 hour shifts haha. I joked with her to give me a few hours because I think it was pretty obvious as to how frustrated I was.

But as time went on and my heartrate began to settle, I was able to put things back into perspective. The positives out of this appointment?? Well, while I see my mother in law all the time, we were able to have some one on one and I got to learn a little more about who she is as a person and not just as a grandma! I got to spend the day with my sweet boy because pretty soon he will be in school so these little trips will be no more! And…I guess I should be thankful I don’t need surgery…for whatever reason the doctor had in mind before talking with me!

Thank you all for the prayers and encouraging messages you sent me today…I had a good laugh over some of them!!😂😂😂 God’s got this!!

Enjoy your weekend!