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!

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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!

And yet another season

Welcome 2018!! I know it’s been awhile since I posted and I apologize for that but I do appreciate all of the messages from those of you who have checked up on me!!

Things have been going pretty well and it has been a great last couple of months celebrating the holidays with lots of family time and then just getting back in to the routine of school after the long Christmas break!

As far as my health goes, I am doing okay!! I unfortunately have some new symptoms and I do go to the doctor next Tuesday! I am still getting a lot of cramping in my right leg, my feet and hands are always cold and I have been losing my hair!! I have to admit I panicked a bit when I realized what was going on but thankfully I’ve always had really thick hair so I have a lot to lose before I am bald but it is getting really thin haha. Plus, Tim said he has enough hair for both of us and he’s not joking! One day Tim came home and asked if I got a haircut so that is when we realized these new symptoms were becoming more noticeable to those who are around me all the time. I did talk to one of my doctors and she feels it is definitely vascular and related to my autoimmune illnesses. So next Tuesday I go to a new vascular doctor to discuss these symptoms as well as some treatment options for the new diagnosis of Raynaud Phenomena.

While that aspect has been discouraging, I am not letting it get me down and I am still pushing forward the best I can. I have been trying to eat healthier and be more consistent with my exercise! Oh, and the more I exercise the more weight I gain but whatever right?! I AM WALKING!!! And while I do not walk at a very fast pace or for long distances on my treadmill…I am walking every day!! And that is a huge improvement!

Then over the weekend I got caught up on some housework. And while I was cleaning my bathtub, I got overwhelmed with how far God has brought me in just over a year. This bathtub is the tub I was so embarrassed to let my aunts clean a year ago! My back pain had been so excruciating and I was not walking for months, then I had two back surgeries and was down even longer! My mom, my aunt and their cousins came to help me with the housework…and I was beyond grateful for them!💕 And now…I am physically able to clean the tub myself!! And yes…cleaning my bathroom truly is a blessing and I actually enjoyed being able to clean it!!

While celebrating the progress I have made and the fact that one long painful season is behind me, I began to think about my husband and how he is still in a really tough season.

This week he started a new full time job which means benefits and insurance!! This truly is an answer to our prayers and we are extremely grateful for this opportunity. I really do think this is going to be wonderful and I am very excited to see where God takes us with this!! However, if you ask me how excited we are, I will most likely hesitate and struggle with how to respond.

Yes, a HUGE answer to our prayers, yes, health insurance that we finally will not have to pay out of pocket for ourselves, and yes, some financial stability…all wonderful things!!! But, Tim will also continue to run our cattle operation so this means he will be going back to extremely long days between his new full time job (which now includes extreme overtime of seven days a week) and his full time job with cattle.

And I struggle with my response only because while I am excited for him to get this job, I am not the one who has to be putting in the 16 hour work days. That’s just crazy!! I figure it’s probably like him getting excited when I get new stents….the stents might help me for a little bit which I am truly grateful for but the stents do not cure me…so like my stents, we are basically outweighing the pros and cons of this job…and even though this job is a wonderful thing…it doesn’t change the fact of how much time he will be away from his family and how much exhaustion he is going to have to take…physically and mentally.

When I look at things from his view…I’m sure he feels as though he has been in this same hard season forever! Unlike me celebrating the fact that I’m healthy enough to clean my bathroom, I just don’t think Tim has gotten to that point of praising God for 16 hour work days…and that’s okay…at the moment. Between his brother passing, my health, his nonstop work….and now another full time job…on top of his already long days, that is a lot to deal with!!

Cattle are demanding enough especially in the snowy cold weather…which by the way…I learned never to remind my husband that our joy comes from Jesus and not our circumstances when he is just about to go work out in -30 degree weather!!😂😂😂 And now another full time job brings on even more work and less rest for him!

But, Tim is an amazing father who has sacrificed a lot of his time and sleep to do whatever it takes to provide for his family. He is hardworking and determined to take care of us. And he does not do all of this work out of greed, but because of necessity! But regardless of the crazy hours he has worked over the years, he has still made it to the kids’ events and been there for them.

So I am asking that you especially keep Tim in your prayers this next couple of weeks as he adjusts to some pretty long working hours. This job is definitely what we need and we are so thankful that he was able to get benefits, but while we figure out this transition, it’s going to be a challenge for him to work at his new job, keep up on the cows and help take care of things that only he can take care of at home.

And while I was thinking about all of the challenges Tim and I have faced as a couple between my health, his work, family sicknesses and death…our seasons just seem to be so extremely hard, but I have also discovered how each new season leads to another opportunity for us to experience and testify to God’s grace, mercy and never ending love…but I might wait a few weeks to point this out to Tim!😜

All For His Glory

Back to Iowa City I went, this time for a follow up on my heart and pulmonary artery stents! I will be honest and admit that I did not want to go. The last couple of appointments I have been to whether for my heart, SVC or lungs have pretty much resulted in the conclusion that I am as good as I am going to be. Not necessarily a bad thing but what’s the point of going to Iowa City every month if nothing can be done?

Yes, not a good way to be thinking and it’s been a long time since I have even considered skipping any Iowa City appointments!

So, while still in that negative mindset, I began texting my sister the night before to fill her in about how my symptoms were bad enough to be a bother to me but at the same time, they had not really gotten much worse since my last appointment. She was asking questions and agreeing with me on everything I said until I complained that my appointment would be a wasted trip.

And without hesitation, she shot back a text that said “but it puts the rest of our minds at ease”.

And wow did that text hit me hard! She was absolutely right and I realized just how negative…and selfish I had been!! A reminder that these appointments don’t just affect me, but my entire family and a lot of my friends!

Instead of being grateful that I have not had a significant decline in my health…I was complaining about having to go to an appointment and wasting my day to confirm that?! That would be the best news ever to hear there is no progression!

That text message changed my whole attitude and got me excited for the next day. Not much change would mean a quick visit with the doctor and no surprise tests scheduled that would keep us stuck there all day so maybe Tim and I could go shopping for a change afterwards!

Asher got to tag along again with us and the highlight for him was pushing buttons and riding in the elevator…

…and going up and down the escalator!

My cardiologist had moved offices so it wasn’t until we actually arrived that we realized his office was now directly across the hall from where Tim’s brother had passed away and I couldn’t help but mumble in frustration to God…”really? Like it’s not hard enough for Tim to keep coming here anyway?”

So that didn’t start things off too well with Tim but Asher was able to be a good distraction and he got dad to play some games on their devices while we sat in the waiting room…but that darn Christmas tree in the background is where Tim and I shared some heartbreaking moments over the loss of his brother…

Thankfully we didn’t have to wait for too long before I was called back to discuss my symptoms with the nurse and a med student.

Okay, for those of you who have gone through this…it can get quite tiring to repeat ourselves over and over to nurses, medical students, the doctors and more medical students so I have learned to make things even more interesting for those that I discuss my issues with! I totally appreciate all of them taking the time to listen to me but frankly, yes, my situation can seem gloomy and depressing so I let my personality shine through right away to give everyone an idea of what type of person they are dealing with! I want them to know I am happy regardless of what they have to say!! I don’t want them to be afraid to tell me the “bad” news! I want my team of nurses and doctors to know I am okay if they don’t have “good” news. Yes, my health is terrible, sure I am slowly dying…but we all are! Yes, I have some extreme pain and symptoms…but I am still able to laugh!

And today, even my husband had a “deer in the headlights” look at me when we were discussing my symptoms.

I was informing a medical student that I have been extremely tired with chest pressure the last few months, however, I didn’t really think it had gotten worse from the last time I went through the heart cath procedure. Tim also pointed out that I have been pretty swollen in the mornings, especially in my head and held out his hands to expand on how much bigger my face was.

And I really don’t know where and why this came to my mind but without skipping a beat I looked at them and said “he goes to bed with a 10 and wakes up with a 2”!

Noooo, that was not appropriate and NO, I shouldn’t have said it and NO, I probably shouldn’t blog it but the look on their faces was absolutely priceless…😂😂

That was pretty much the end of our conversation and then Tim was able to manage a “I can’t believe you said that” in between laughs before the doctor came in.

We reviewed the most recent scans I had done a few months ago and as expected, he didn’t think much had probably changed from my last heart cath since my symptoms have still been manageable! Stable is good…I will take that over progression!! Here is my left lung which is working at 100%…the dark shaded areas indicate a healthy lung with significant blood flow. I really am praising the Lord every day for the lung function in my left lung!!

And then, here is a current picture of my right lung…unfortunately the stents in my pulmonary arteries did not hold up as well as we had hoped for so basically as seen…the only blood flow in my right lung is in the lower lobe, therefore, very little lung function.

My doctor did say that in order to know exactly what was going on, as well as to measure my numbers for the arterial hypertension, that we could schedule another heart cath procedure where he would go through the groin again and then intervene if need be. However, the cardiologist feels that he has done all that he can do from his standpoint and the fact that the rest of my lung is so bad…he doesn’t feel going in would benefit me much regardless. I agreed and confirmed that I did not want to go through that procedure again….especially if it will not benefit me…the risks are simply not worth it to me at this time.

I of course did take into consideration that it’s also important to intervene if need be as soon as symptoms arise but my symptoms have not gotten significantly worse in my opinion, from the last cath I did, so I am fine with continuing to just monitor. Plus, he pointed out that some of the vessels were completely gone now so stenting isn’t even an option anymore!

He then made small talk with Asher throughout the appointment but with so many different people trying to carry on a conversation with him, Asher decided to shy away from everyone…but he still flashed that smile of his!💕

So that is my update. I do go back to Iowa City in a few weeks to discuss the numbness in my right leg and arm as well as the new diagnosis of Raynaud syndrome.

Again, I did not want to post these pictures in order to gain your sympathy, but instead, I just wanted to give a visual of what I am dealing with and talking about when I say my lung is functioning at less than 1/4. Life is definitely more challenging for me but yet so much more rewarding!! I have been given a deadline for all of my illnesses yet I continue to fight past the dreaded prognosis….and every day is a reminder of how blessed I am to be living another day with my kids and husband!

And because of the extremely painful symptoms, the never ending doctor appointments and the continued uncomfortable procedures and surgeries that will always be a part of my life…I have learned to trust in the Lord and not lean on my own understanding! I have outlived all of the prognosis’ I was given which only proves God is in ultimate control and is the only one who knows how many days I have left! He is with me and has blessed me more than I ever could have imagined!

Life is not easy but He never promised that it would be!!! What He did promise is that I would be healed some day when I enter His kingdom and I know this to be true! My circumstances and illnesses may be difficult and never ending now but my hope is in an eternity of being pain free and filled with a joy I can’t even begin to understand through and with Jesus Christ!