Keeping up with Asher

Today was the follow up appointment from my SVC angioplasty back in December. I got prepped for my ct scan…

and then once the testing was done, I saw my doctor to review those scans. Not surprising…some of my stents are narrowing again. My right stents look to be holding up pretty well with good blood flow, however, my left stents closed back up to about 40%. After more discussion regarding my symptoms we decided to hold off on another angioplasty for now. Instead, I will schedule to do another ct scan in three or four months and then most likely I will probably need angioplasty to open up the SVC stents at that time.

While it is discouraging that my stents seem to be closing up fairly quickly after my procedures, I was ecstatic that this appointment did not result in immediate scheduling of another angioplasty! Like I have said, I am grateful that doctors can still intervene and help manage some of my symptoms but I just did a procedure in December for my SVC stents and then in February I had another angioplasty to open up my pulmonary stents. I’m kind of tired!!

And speaking of tired, Asher had Monday and Tuesday off from school so I got to spend some one on one with my little guy!! Our days were busy but so much fun!! He is so helpful and couldn’t wait to help me clean the kitchen…

…and bake cookies!!

He also helped me run errands…

But while we worked hard…we also played hard with puzzles and board games…

We were also blessed with some beautiful weather so Asher and I got to play at the park…

And enjoy a walk on our local bike trails!!

I am purely exhausted and we are only halfway through the week haha!

My next appointment in Iowa City is at the beginning of May to check my pulmonary stents and then I also have an eye appointment in May which will hopefully be my last eye injection for awhile!!!

I never know what my scans and appointments will bring so I really do try to enjoy my days to the fullest in between doctor visits!

And as resurrection Sunday approaches, I am reminded of the ultimate sacrifice Jesus made for me and I will continue to put my hope and trust in Him regardless of my test results.

John 3:16

John 11:25

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My fear doesn’t stand a chance

I had my follow up pulmonary appointment in Iowa City last week. All in all it went pretty well! I did the fun pulmonary functioning breathing tests…no pictures of me in the booth this time!

My results were consistent with what they were six months ago so no major changes there!

I do, however, still continue to battle that horrid brain fog later in the evening and especially in the morning. And while I don’t sleep the best, I do usually fall asleep extremely fast and then I wake up very confused throughout the night and in the morning.

Tim continues to joke about how super sweet he was the night before and it’s too bad I never remember but it only takes about five minutes for my brain to clear before I can assure him that was not the case haha. We are still finding ways to make light of my struggles and the way he has always been able to make me laugh is one of the many qualities I love about him!

Anyway, since I have had this morning brain fog for quite some time, my doctor questioned if I am getting enough oxygen during the night. He decided to order another oximetry test for me to do overnight and thankfully I was able to do this at home! I had this test done maybe three years ago so it’s not a big deal. I just wear it like a watch and clip the monitor on to my finger then it will record my oxygen levels while I am sleeping! The purple one is mine that I use to keep track of my oxygen during exercise or any other daily activities and right away I started the night out lower at 93.

Earlier in the day it had really dropped while I was cleaning house…I always tell Tim laundry is going to be the death of me!!😜

I was a little concerned about what my levels would do overnight! I obviously wasn’t too concerned though because I could not resist whispering in the dark with my raspy voice and glowing red finger… “ET phone home”!!

I still laugh thinking about it but Tim just shakes his head at me haha!!

I completed the test then took the meter back the next morning and went about my day!

And of course my day was filled with yet another doctor appointment. I had my follow up diabetic appointment which required more lab work…

…but thankfully all of those tests came back fine too!

And then Friday I got the call on my oximetry test!

Apparently I kind of “failed” the test! My oxygen had indeed dropped significantly over night, to the point where I qualify to wear oxygen at home. HOWEVER, I apparently was just over the qualifying mark by like one minute so now we needed to make a decision. The whole point of using oxygen is to help my body do something it can’t do so once I begin wearing oxygen at home my body will not have to work as hard which could then eventually make me more weak in the long run! And the fact that my levels only dropped one minute longer than needed for me to qualify isn’t that terrible considering I only have one really good working lung! I live every day with symptoms such as chest pain and shortness of breath that “normal” people would be encouraged to seek immediate medical attention for so why should this be different? If I start oxygen now because I skimmed past the qualifying point…will I ever be able to go back to not needing it or will I just start to gradually decline from that point on?

After more discussion with my doctor, we decided that while yes, the brain fog is annoying and I continue to struggle with fatigue, the oxygen most likely would really not benefit me much at this time.

So while my first initial reaction tends to be discouragement because I feel stuck in between too sick to be healthy and too healthy to be sick, the last thing I ever want to come off as is ungrateful! I am able to see how good the results really are! I also thought back to my initial diagnosis when I was searching for a doctor who could help me. When stents became a possibility I didn’t think twice about getting them because I felt like I had no other choice due to such severe symptoms. Right now I don’t feel that strong about needing oxygen.

Like one of my friends pointed out…my body is still functioning!!! It may have to work a little harder or it might be a little slower but my body is still trying to do what it needs to be doing! And I am extremely thankful my levels were not dangerously low to the point where it wouldn’t even be questioned as to if I needed oxygen.

I am also grateful that God has lined me up with such knowledgeable doctors who don’t ignore me or just push meds down my throat but instead encourage, support and challenge me!! My doctors genuinely care about my overall health and see me as someone’s wife, mom and daughter…not just as a patient so I know they will truly do what they feel is best for me!

After all of my doctor appointments and tests and labs were done for the week, I spent one afternoon observing as our older two kids helped Tim out on the farm!

Skyler had stopped home to visit…well to do laundry but I’ll take what I can get! She jumped right in to help Tim…

…and to play catch with her baby brother!

A simple every day moment…just watching my family do their ordinary daily chores and the fact that I was walking around outside breathing in the fresh air gave me an overwhelming sense of God’s presence. I don’t know how to really describe it but I had such a strong appreciation for the health that I have and I am so extremely thankful for all of the days God continues to give me on this side of heaven with my family! I mean…how can you look at this kid and not praise God for these precious little moments?! Nothing better than flip flops, football and a telescope out on the farm!

Next week I am back in Iowa City for a follow up on my heart stents. I will do another ct scan to make sure all of my stents stayed open from my last couple of angioplasties and I am praying there is no progression. But regardless of the results, I know Jesus has already gone before me and I have nothing to fear because in Him, I am already healed!

Injection Day…

I wasn’t able to make it to my eye injection last week so it got rescheduled for this morning and go figure the boys have been home sick. I decided to keep Asher home one more day because while he is feeling a lot better…and back to his silly old self again, he still looks rough and has that lingering cough.

After Leah got on the bus…

Asher and I took off for my appointment. Once we arrived, I started the whole process of checking my vision and pressures then getting my eyes dilated followed by scans. Asher asked a lot of questions while we waited to see the doctor and he was in awe of all the cool technology!

The doctor came in to review my scans and then I got prepped for my injection…and since Asher was in the room with me he got to wear a mask too!

Everything went well so I scheduled my next injection for eight weeks out and then Asher and I were on our way back home for him to rest!

Sooo…did you catch that?? I scheduled my next injection for EIGHT weeks!!! When discussing my scans today, the doctor said this new medicine we tried had definitely made a huge improvement with the leakage and swelling in my left eye!! I go back in eight weeks for one more injection and if everything still looks good…I can be done with the shots for awhile!!!! Ahhhhhhh!!

I began having laser surgery on my eyes for this issue over five years ago and then started receiving injections every four to five weeks almost one year ago so I don’t think you can even begin to grasp how excited I am!!! Asher definitely couldn’t figure out why I was crying happy tears the whole way home and Tim couldn’t figure out why I was so excited to see him at lunch today! Haha! Just kidding…I’m always excited to see my husband! 😜

Lots of tears, lots of pain and lots of discomfort but through all of that…even more prayers were said so thank you all who continue to pray for us!

This is my New Year…

While New Year’s Day is when the majority of people reflect on how their previous year has gone and make goals or set dreams for the upcoming year, for me, I tend to do this on the last day in February. Rare Disease Day…a day where many of us come together to raise awareness by sharing what it’s like living with a rare disease.

As many of you know, I was diagnosed with a rare disease Fibrosing Mediastinitis (fm) back in 2002 related to a histoplasmosis infection I possibly had contacted at some point during my early childhood. At the age of 27, I was given no more than ten years to live and was strongly encouraged to make arrangements for Skyler as doctor after doctor told me I was dying and needed to have her care in order before I passed. Here is an article I did a few years ago with my hometown newspaper to help spread awareness and my doctor describes what fm is pretty well!

https://www.google.com/amp/s/wcfcourier.com/news/local/waverly-woman-fights-rare-lung-disease/article_ceed296f-16da-5cba-970d-089e877adc8e.amp.html

In 2007 after extreme symptoms of turning purple, passing out just from bending over, ending up in the emergency room because of severe memory lapses and the chest pain which kept me up countless nights in pure anguish…it was discovered that my right lung was now functioning at less than 11%. I was also diagnosed with Superior Vena Cava Syndrome as a result from the fibrosing mediastinitis…the first of many symptoms I would eventually develop over time because of the fm…

As much as my secondary diseases mention cancer being the causes…fibrosing mediastinitis is not cancer, therefore, with no treatment to improve the fibrosing mediastinitis, there are no treatments to improve or cure any of my newly developed illnesses so our intervention becomes a guessing game…

https://www.verywellhealth.com/what-is-superior-vena-cava-syndrome-2249242

I finally found one doctor who knew what fm was and was still willing to put four stents in my SVC. This would not help my lung but it would possibly improve all of my symptoms I had been experiencing. It was a very risky move at the time but my parents and I concluded that I had no other option but to at least try the first promising intervention since my diagnosis five years prior!

In 2013 I was diagnosed with another rare disease called Pulmonary Arterial Hypertension…again, a result from my first rare disease of Fibrosing Mediastinitis.

https://www.webmd.com/lung/pah-overview

This is clearly why Rare Disease Day is so important to me and I want to continue to share my story in hopes that it will provide encouragement to someone else!

I have participated in Rare Disease Day a few different ways in the past by having our state representative read my story on the house floor at the Capitol and then one year I also spoke at the Capitol. I also went in front of our city council one year and requested a declaration that the Mayor have the city of Waverly declare the last day in February as Rare Disease Day which he did!! Last year I made a personal video of my life and what it’s like living with a rare disease. I received so much positive feedback that I decided to make another video this year! Unlike the first video that was a quick overview of the first 15 years living with a rare disease, this time I just highlighted the ups and downs of what the last year has brought….

Four angioplasty procedures in which the first three were done through incisions on both of my arms to open up my SVC stents in February 2018, June 2018 and December 2018. The fourth angioplasty with ballooning was done with incisions through both sides of my groin to open up my pulmonary artery stents at the beginning of February 2019. I also had pulmonary function breathing tests, countless ct scans, xrays, venograms and lab draws not only for the fm but for my diabetes, as well as a total of TEN injections in my right eye.

The past year also brought heartache as my grandma passed away and my uncle was diagnosed with stage four cancer, went through chemo and radiation and we are praying he continues to stay in remission!

HOWEVER, what a year of celebrating it was too!!! I had a good report on my follow up back surgeries, this past month there was significant improvement in my right eye meaning the eye injections got pushed back to every six weeks and Asher started kindergarten!! I started attending BSF, bible study fellowship in which I am digging into the Bible and learning just how sovereign our God truly is. That group has connected me with some wonderful women and I am excited to see where God leads each of us and our new friendships!

My husband and I took a vacation with all four of our kids to the Smoky Mountains and Charleston South Carolina in September, we took a weekend trip to see hot air balloons, I went golfing with Tim for the first time together (which is sad because we both love to golf haha) and then all six of us were able to go to Panama City Beach after Christmas to spend the New Year’s with my parents…a gift from my parents we could not refuse to turn down again!!

Tim and I were talking about how we had actually done more things this past year as a family than the entire ten years we have been married. And while we were extremely blessed that health and medical procedures, jobs, time and finances worked out for us to do these trips, we were also able to find joy in the day to day everyday activities. I don’t think we’ll be doing anymore big trips soon but it sure was a lot of fun to see the kids enjoying so many new experiences and I was able to cross a few things off my “memories in the making” list!!

What truly made this past year amazing, however, was the fact that I got to cross off the very first item I wrote on my list from over 15 years ago!!! I got to see Skyler graduate!!! Something so many didn’t think I would be around to see! Here is a picture of Skyler and me when she started kindergarten and then both of us on the last day of her senior year! We didn’t know it yet, but my face was swollen in that first picture because my superior vena cava was completely blocked…100% closed!!

I never liked the way I looked in this picture but now I want to show it off to the world…because this picture is a reminder to me of just how big our God is!! And He is so so good!!

I can still see myself back then as if it was yesterday…in bed every night crying and often times punching and screaming into my pillow for God to make the pain stop! I was so angry at Him for not “fixing” me. My life seemed unbearable and I had moments when I didn’t want to kill myself…but I really didn’t want to live either. That picture was from 2005 and I would not receive stents to relieve any symptoms until 2007! Five years since my diagnosis before I received any type of intervention to help me feel better!

While I am still not cured and in fact have even more health issues today and sometimes more pain than I did back then, my relationship with God has grown and that makes such a huge difference in how I view my health, my circumstances and life…because this life is extremely hard!

I have many horrible days where the pain and symptoms of this disease takes over, more times than anyone will ever know, and I am forced to stay in bed or take numerous breaks throughout whatever activity I am trying to accomplish for the day. And sometimes I get sad when I recognize how many pictures of me and my kids are at doctor appointments but I am confident in God’s love for me! Unlike those days in the past where my faith was easily shaken by the results of my medical tests…I am now more at peace during those dark times because I am hanging on to God and His promises with hope that I will be healed when I enter in to His presence someday!!

God has given me a new desire to live this life even if it’s filled with daily pain…even if it means angioplasty every three months to open my stents back up…even if I have to receive a shot in my eyeball every 4-6 weeks for the rest of my life (but that would definitely be challenging haha) even if I will consistently attend doctor appointments and have never ending tests…even if I suffer tremendous heartache.

There is so much life to be lived in between all of this junk though and hopefully that is reflected in my video. I want to encourage anyone who is facing hard circumstances right now whether it’s a rare disease or any type of health issue, failing relationships, struggling finances or whatever…don’t give up!!

Make your own video or write a list of all the positive things that have happened in your life big and small…because those small things are really big!! And when you look back on your past year I pray you will discover that perhaps…just maybe…you smiled a little more than you thought you did in the midst of all your hardships and you can be reminded of your motivation as to why you are still here!! Keep fighting!

Here is the link to my video…

https://m.youtube.com/watch?v=7ZPueflc7Yg&feature=youtu.be

One step at a time

My right heart cath with angioplasty was a success!

After I arrived at the hospital and was shown to my room the nurses came in introducing themselves and mentioned that one of the doctors was out there bragging about how I had written a book. I started laughing and said he was the doctor I had just met a few months ago. My regular doctor had told him about the book so while we were in the middle of my checkup he was on his phone ordering my book off of Amazon. The nurses and I continued to make small talk and seemed to do a lot of laughing as they put in my IVs and prepped me for surgery.

I had read my devotion earlier that morning and received so many encouraging messages from you guys and now to begin my appointment with such fun nurses and doctors…I was feeling pretty confident about this surgery.

Tim on the other hand clearly was not amused by my sass. Nobody likes hospitals but I have no choice and have to be here quite frequently so I try to make the most of it. I took a quick selfie in between the nurses coming in and out to check on me and Tim said the picture definitely tells the truth about our attitudes!!😜

I was then wheeled off to the operating room and like last time, I had to wear oxygen which is now apparently my new norm as my levels tend to drop too low during these procedures anymore.

I have a great medical team and they do the best they can to make me comfortable but in order to measure the pulmonary pressures and take pictures they have to go through the groin, meaning for the first part of this procedure I need to be awake enough to follow their directions such as when I need to hold my breath, breathe, etc. As much as they try to numb the incision site first, I am still pretty alert and feel quite a bit throughout this process.

I was on the table trying to convince the doctors and myself that I was okay as a couple of tears escaped my eyes. If I felt a sharp poke I would jump. I also felt a lot of pressure which made my body tense up and that weird feeling as I felt the catheter slithering through the inside of my body made me jittery. They would give me more medicine in hopes that I wouldn’t feel as much, yet could still be able to comprehend and do what they asked of me.

I don’t know if I was just overwhelmed by such an emotional week my family has had or what but I couldn’t seem to relax and apologized several times for being so jumpy.

It was determined that my artery was indeed closing so we were going to do angioplasty to open it back up. The doctors had already made the first incision in my right groin, however, they were not able to get the sheath through so they had to make a second incision on the other side of my groin. I’m never too excited about extra incisions. Throughout all of the discomfort I was experiencing, I lost focus on the fact that God was still with me…and that made matters so much worse. My mind went to a place it hadn’t been to in a long time. I began thinking about the what if’s…not necessarily in regard to this surgery, but…

What about the next angioplasty I will need? My heart doctor could not get through the right side of my groin and now my SVC doctor had said my arms were shot from so many procedures that they too might need to start going through my groin. But what if going through the groin won’t work again? What if I’ve had too much wear on my body that they can’t find access to do any intervention? What if these procedures won’t be an option for me soon? What if the doctors tell me there is nothing more they can do?

But then my morning devotion popped into my head…

One. Step. At. A. Time. I remembered the last line especially because I replaced the words and read it as “Walk by faith, not by sight, trusting Me to open up your stents and to keep them open.” Haha! I know that is probably weird but those words seriously popped into my head while I was reading it. I need to only focus on this moment. My what ifs are the cliffs referenced in my devotion and I do not need to worry about it!! God has already prepared a way for me and whatever mountains I face He will make sure I have everything I need to get over them.

And then just like that the meds really kicked in…or perhaps peace, and I didn’t feel anymore pain for the remainder of my procedure.

As for recovery, I had to lay flat for 4 hours before I could go home. I was not to lift my legs or even lift my head up the slightest bit so when I sat up to grab a drink the nurse held the straw up to my mouth and told me to stay down. Once I realized how strict they were on that rule, I would wait until she was out of the room and sneak a drink on my own. I was able to manage getting a drink while barely moving my head so don’t yell at me, it’s all good!! But yes…I also tend to push the limit with some of the restrictions I find silly.

After four hours of consistent checks on both my infusion sites, the nurse reviewed discharge instructions and then I was able to go home! I do have to come back in one month for a ct scan to make sure no new issues develop.

I didn’t realize how miserable I really was last night until I woke up this morning feeling pretty good. Tim is working today so I took Leah to gymnastics and then came back home to bed. I am still being very careful not to overdo anything and will make sure to get plenty of rest!!

So for now, I am going to relax and enjoy the fact in knowing that all eight of my stents are open today!!

Thanks again for all of your prayers and messages…and thank you to my mom’s cousin for some super warm and comfortable pajamas to recover in!

God wink

I had my eye injection today and after everything was said and done, I walked out of my appointment, tears of course filling my eyes because like my kids always say…I cry a lot, and I raised my hands while lifting my head to look up “thank you God.”

This morning was one of those moments when I sensed the Lord with me throughout the entire appointment. I had just gotten done with my vision and pressure checks then was sent back to the waiting room to wait for scans, which would then be followed by the injection in my right eye. An older lady approached me and asked if she could sit by me or if she would be invading my space as the chairs are quite close together. I assured her it was fine then she sat down and began making small talk about the cold weather.

She then switched the conversation over to the reason for her appointment today…an eye injection and she wasn’t happy about that. She asked if I had gotten the process started for my appointment yet and I said “Yep! Pressure, vision checks and scans done so now I wait for the injection.” She was taken off guard as she pulled her head back with a puzzled look on her face assuming I was just there for a regular eye exam. She continued by staying something I haven’t heard in a really long time…”but you’re so young.” And unlike when I was younger and frustrated by that comment…I smiled at her and simply replied thank you!! She thought I was in college!! I mean…it’s been a long time since I was mistaken for being so much younger so I soaked that in as a compliment this time!!

She began asking questions about my situation so I gave her a brief rundown of my illness, trying to highlight the basic points! I can still see the look on her face as she slowly nodded in complete awe mumbling “you are a true miracle.” I agreed and then told her about my book which she had me write down the title and my name as I apologized for not having one on hand.

She then filled me in on how much she dreads these injections, not that they’re terribly painful but more or less the thought of getting a needle in her eye and the entire process of what we have to go through…

She said the shots are uncomfortable but it’s over quick and today would be her third injection. When she heard I had been getting these injections every four to five weeks for about 9 months she felt ashamed for complaining which I reassured her she did not need to feel bad. She mentioned laser therapy as her next option if these shots didn’t work which again was something that made her very anxious. I was able to provide her some comfort by confirming I had done over six lasers on my left eye and two on my right eye so if she could do these injections, she could do the lasers. We both agreed if these options can help prevent blindness then a few moments of pain and discomfort here and there is worth it.

She then shared how she had realized this morning on her drive to the doctor that maybe all of the people in the waiting room felt the same way. She said maybe there are others who don’t want to be there either so she told herself “I am an 81 year old wuss and I just need to put on my big girl panties.” She decided that instead of being afraid, she was going to spend her time praying for everyone in the waiting room. And then again she gave me that look of awe as she says “and then I met you. What a God wink.”

I was called back for my injection and let her know I would be praying for her as well. Once back to the room I was pleasantly surprised as the tech filled me in on the great news of my scans. She informed me the first two words the doctor had written were “significant improvement.” I was ecstatic and even more amazed when I felt no pain this time during the injection!! That may have very well been because I was at so much ease from the conversation I had just had! My eye was still red from the last injection so I was nervous it might be more sensitive to another injection so what a relief!!! My appointment ended with the doctor telling me everything looked great so set up my next injection in six weeks….SIX weeks!!! I don’t know if it’s because he used a different medication in the injection last time or if it’s because I got six of my eight stents opened up but either way I was happy to have the next injection pushed back at least a week!!!

As I was leaving I saw the woman I had been visiting with. I thanked her for her prayers and shared my good report which I honestly think she was just as happy as I was! She thanked me for providing her hope as well and then we went our separate ways!

While I know God is with me at every appointment and procedure, today was just extra special as I was able to sense His presence so strongly…all because an 81 year old woman asked if she could sit by me! Enjoy your weekend everyone!

The date is set!

Wanted to give a super quick update and then I probably won’t be blogging again until my procedure…so don’t get used to me posting this much haha. I did receive a phone call on Tuesday from Iowa City and we scheduled to have my pulmonary angio with right heart cath on Friday February 1st!

They actually had an opening for me to come in early this morning but less than a 24 hour notice just wasn’t doable because I didn’t have anything prepared for recovery time or kid stuff figured out plus Tim likes to have things taken care of at work before he takes a day off. The plan is for me to come home the same day but the other times they went through my groin I ended up staying. The doctor did again stress that me staying overnight was still a possibility this time as well but I am confident all will go as planned and I’ll be back in my own bed by the end of the day!😉

The doctor was also in agreement that waiting another two weeks would be fine and I didn’t have to get to the hospital right away today. I was very happy to hear this considering the big week we have coming up!! Leah will be doing her gymnastics competition in Des Moines this weekend then Monday Nathan turns 15 and Thursday Tim and I will be celebrating our 10 year anniversary!! Very grateful that I can enjoy these special celebrations without worrying about recovering from my surgery!!

That’s all I’ve got for now! Enjoy your week and I can’t say thank you enough for your continued prayers and random words of encouragement throughout the days!!

Random 💭

Today was my follow appointment in regard to the ct scan I had done on my back before Christmas. I have been having more pain and discomfort in my lower back, not to mention the numbness in my right foot again. And due to no school today, I had some much welcomed company!!

Leah and Asher joined me and Leah asked if going to the doctor was the only thing I ever do when they are at school?! Yep…pretty much! I am very relieved to share that a third back surgery will not be required!! The doctor and I discussed my scans and I do have a bone spur along with some mild disc degeneration which could be the reason for my back discomfort. Unfortunately, the numbness in my foot is most likely the permanent side effect from when my back was so bad. However, at this time, she does not feel the issue is significant enough to do surgery and I agreed!! She encouraged me to possibly get an injection at the pain clinic if my pain worsens or I am always able to call their office back if needed. I should also continue with my stretches and treadmill. I was so thankful to hear this news!!

I called Tim to update him on my appointment and then he asked if I had heard anything in regard to when my pulmonary angioplasty will be. I gave him the same answer I have given everyone else who has been asking…nope, and I’m not going to call and beg to get it set up.

I’ve said it before but I just don’t like this procedure because they will be going through my groin again and for the most part I feel pretty good right now!! I mean yes, I still have the chest pressure, the shortness of breath, I still have that groggy feeling in the morning and I still struggle with fatigue but I am active!! These are just my normal…not normal symptoms!! I have been going strong since my SVC angioplasty in December and it feels so good to be doing things!

I was playing hard back in Florida between volleyball, swimming and so much walking!! I have been doing Fitbit challenges with friends and family which really motivates me!! I am also back on my treadmill or walking outside 20-40 minutes almost every day since the New Year!! I’ve been goofing around with the kids a lot and I even started a 30 day challenge in which I am decluttering my house!! By the way…if I die soon, for the first time ever I want you to actually OPEN THE CABINETS and LOOK IN MY CLOSETS!! Haha!

Anyway, I know my illness is confusing and I always refer to my eight stents and group them together but they are really two different sets of stents that require two different treatments by two different doctors. It has just been one month since my SVC angioplasty where I have six stents in my superior vena cava and now I need a pulmonary angioplasty to open one of the two stents in my pulmonary artery!

But I feel the best I have felt in a long time!! I was really hoping I could go at least six months without either of these procedures, well honestly I was hoping a year! I know when there is even a hint of any of my stents being closed that I need to get into the doctor right away! It’s always better for them to do this surgery sooner than later because if I wait too long I risk the chance of them not being able to open any of my veins and arteries back up again.

My whole fight with this disease though has been reactive and now I have a chance to be proactive. Before I felt lousy and nobody could help me…now I feel okay and they want to do angioplasty! I told my husband “why fix what isn’t broken?” but we both couldn’t help but laugh!

Uhhhh…the doctors are just trying to keep together the already broken pieces of me!! So with all of that being said, I will be calling the doctor again on Wednesday to schedule the procedure if I do not hear back from them by then.

I started going through and deleting pictures on my phone when I got home this afternoon and I came across a picture I typically don’t like to share…at least the first side of it. This is a comparison from Skye’s first day of kindergarten and then me and her on the last day of senior year before she graduated! I was diagnosed with fibrosing mediastinitis when she was 2 years old and here she is at the age of 5 just starting school! My face is extremely puffy as you can see…

…which we would finally discover two years later was because my superior vena cava was 100% blocked.

Yes…not until over two years later before someone finally figured it out! My symptoms were just starting to come on full force when she started school but nobody took me serious. Nobody could even begin to imagine how hard I would be fighting for my life those next several years.

I kid you not…I probably stared at that picture a good ten minutes crying and talking with God. I can look back now and see all the good He has done in my life when I was scared, angry, bitter, lonely and just consumed with that hopeless and defeated feeling.

But then that picture on the right!!! To be standing there with my daughter when so many doctors said I wouldn’t be made me cry and praise the Lord even more.

And to see a thinner face, not because I lost weight (I weigh a lot more now than I did back them haha) but because the Lord put in my path one doctor to help me in the midst of despair and me giving up…which then led to an amazing team of doctors who currently are doing what they can today to keep me alive!

Shortly after the picture of me and Skye on her last day of school…was a picture of me and Asher on his FIRST day of school!

And I had an overwhelming desire to keep living this life! God, please let me be able to have a comparison picture with him in 12 years!!

Don’t get me wrong, I have always wanted to live but this sense I had to keep pushing forward was so strong in that moment. I have always said I am blessed with my family and I am extremely thankful for the fact that God has carried me through so many days here on earth.

But looking at the pictures of me and Skye makes me want to be able to do the same thing with Asher when he is 18. I said in an earlier blog that I was blessed to turn 44 but that really isn’t that old like I had mentioned! I still have so much life to experience with all of my kids!!

And that picture of my swollen face, now knowing all the symptoms that would follow, the struggle it would be to find help…and then looking at where I am today, I guess that one doctor was right when he said I am a walking miracle.

Of course I want to be here to see my kids grow up but I also trust that God is still with me through all of the joys and struggles that I face today. I have faith that He is only working good in my life regardless of my circumstances so whether He brings me back home to Him this year, or in 40 years, I am thankful to God for every new day here that He blesses me with.

I blame Julie ;)

I don’t always recognize how much the ups and downs of my illness affect my family until we are kind of blindsided with discouraging news.

My cousin called me Monday joking that I am totally living the life…home by myself while kids are at school and the husband is at work. I can do anything I want, it’s like I’m on vacation she said!

She had the day off, had just gotten back from the gym and was going to start cleaning house. She was loving her alone time…but then she did get serious and asked how I was feeling. She knows my life is anything but a fun day off or vacation. I am very grateful for a family who really “gets it”.

Today, however, I had a good update for her! I explained that I was busy decluttering my house and had the motivation…and energy to finish the project I had started! I believe my exact words were “my stents obviously stayed open this time because I am able to do some things!” We continued our conversation for a little while longer, always including some laughter throughout our talks and then we both decided we should let each other go so we could keep our motivation going!

I decided to walk on my treadmill and take advantage of my good day but my workout got cut short as I received an unexpected phone call…from my heart doctor. Once he began talking…it all came back to me. Bear with me because I know my illness is very confusing and hard to follow at times!

I had forgotten I had seen him a few months prior to my SVC doctor and he had been anxious to do a scan of my chest to check my pulmonary artery stents. At the time, we had decided that he would just wait until I did my scans in December for my SVC doctor. This way both doctors could see what they needed to see and I would only have to do one set of tests.

While talking to my cardiologist the other day, he explained that he had some concerns about one of my stents…that problematic stent we had already decided probably wasn’t worth going in to open. He said the scans concerned him for the fact that not only did my one stent look to be closed, but I had more veins and arteries blocked. He discussed my options but then reminded me that they could not do anything for that section of my lung so the more damage that occurs, the more symptoms I just have to learn to deal with. For this reason, my cardiologist felt we should now try to open the stent he thinks might be closed and said “we need to keep whatever arteries and veins open that we can”.

It seriously had only been a few hours since I was telling my cousin how well I was doing…actually the best I had felt in a long time!!

My doctor and I discussed my situation in more detail then I told him I would get back to him as to whether or not I wanted to do this procedure.

Ugh. Another surgery! Another right heart cath in which they will go through the groin…all for minimal effect!! It hasn’t even been a month since my last procedure to open up my other SVC stents!

My husband and I talked it over and he agreed with the doctor that I should do the surgery. I, however, was not as eager and have been dragging my feet ever since. Another procedure means another week or two of recovery and taking this slow.

I have been praying over what to do even though I know the answer! I feel pretty good! I am cleaning house, doing my treadmill and participating in all of the kids events! I was playing volleyball and diving into the sand over Christmas break! I know my SVC stents finally stayed open after the most recent procedure this time because I have been so active.

And then I thought of one of my first bible study fellowship readings when we focused on Joshua! Have you all read that book? It seems like the same thing over and over…and over and you start to wonder what in the world God is up to. And I couldn’t help but think of my life as that…except not as gruesome haha!

So guess who the first person I called was?? Yep…I called my cousin and told her how I was living the dream life haha. She agreed it was discouraging but was able to make me laugh and recognize what I obviously needed to do. And then I reached out to my mom, my sister and a couple of others who don’t like reading my updates on the internet and want to hear from me first. Their reactions were all pretty similar. I could hear disappointment and frustration…and heartache in their responses and they told me I “had to do it”. They were almost pleading with me to do this procedure sooner than later. It was very clear some of them were fighting back tears as they continued to convince me to get things lined up and scheduled.

And it hit me again…the severity of this disease…the unknown. And how it doesn’t just affect me…but everyone who loves me. Like my mom said…she hates this disease!! I definitely agree with her on that!

My SVC stents we’re finally open and I felt the best I have felt in a long time…and now this!! And what’s even worse is this procedure is more preventative than reactive…which I guess really isn’t a bad thing but I might not even be able to tell much of a difference! And that is frustrating because I like to experience immediate results!

Needless to say, I am waiting for a call back to schedule the surgery.

I don’t know what God is doing in my life…I don’t know why he won’t simply cure me or “fix me”…but I trust Him. I know He is doing something amazing throughout all of this…I just might not know what it is that He is doing!!! But, I do know I am closer to Him more than I ever have been so that alone is worth the struggle!!

Unlike my last blog…I don’t have a lot of happy pictures and good news. But I do have this…and this beats a vacation picture any day!

“Happy Christmas Birthday Mom”

I was blessed to celebrate another birthday!!! I turned 44 on Christmas Day and wow am I old! I used to never share my age with people but I woke up Christmas morning realizing I am now 7 years past that dreaded prognosis so the older I get the more I celebrate and praise the Lord for giving me so many amazing days here on earth!

I am actually seeing side effects of getting old, something so many people said I would never experience! And for the first time when I looked in the mirror that morning…I didn’t just see myself as a sick girl. I saw a woman looking back at me who has beaten the odds! A woman with hints of silver shining through the once all dark auburn hair and wrinkles around the eyes…perhaps a few more pounds as well haha. But I also saw a woman God has carried through all of the trials and struggles…a woman God knew would be standing here reflecting on His goodness when doctors told me otherwise.

Asher was the first one to wish me a happy birthday but he was also excited for Christmas and wished me a “happy Christmas birthday Mom” haha! We were able to do our Christmas with all four kids early in the morning then hung out with some of Tim’s family for the rest of the afternoon!

And then once all of us were back home we got ready to celebrate my birthday/Christmas present!! After ten years of my parents wintering in Florida and always telling us every year to come down…we FINALLY were able to take them up on their offer!!! I am tearing up right now just thinking about it!!

The downfall was that this would be the first year we weren’t with Tim’s family for New Year’s Eve. For as long as I have known Tim, he and his siblings have always gotten together on New Year’s Eve to celebrate the new year. After Tim’s brother passed away, it was difficult to do, but we all continued the tradition. This year, however, his family had different plans which made us contemplate on what our own family should do. Tim was on shutdown…we have very few cows at the moment…all four kids were home…so we figured why not ring in the new year with my parents!! Like Tim said…we really had no reason NOT to go to Florida!!

And just like Charleston, we couldn’t have asked for a better trip!! We left early the morning after Christmas…

She’s so cute when she’s sleeping😉

and took our time, stopping at the Arch! Leah and I were having fun anyway haha!

Kids did a lot of swimming once we found a hotel outside of Nashville…

We got up early the next morning and were so excited when the gulf finally came into view!!

And even more excited when we reached our destination and saw my parents…

not to mention the view from our suite!!

It had been almost 30 years since I was in Florida so I shot straight down to the beach for a quick stroll!

Then once we got settled in we went to visit grandpa and grandma. Asher couldn’t wait to see grandpa so he could play Candy Crush with him.

Grandpa also shared some of his favorite foods with us and Asher obviously agreed with grandpa’s taste!!

We spent a lot of the time in the heated pools…

And hot tub!

The kids loved swimming with grandpa and grandma!!

And I don’t know if I was just really relaxed or maybe it was the fact that I was back in Florida with my parents and it reminded me of all our trips we took there when I was growing up but I felt like a kid again and if you hadn’t already noticed…my silliness definitely came out, especially in the pool we had all to ourselves!

Tim had a lot of fun as well and was throwing kids up in the air so I had to have a turn too!! And let’s just say, as bad as I look in this picture…it was the only one I am willing to share because Skye and Mom had some pretty ridiculous shots but our faces are priceless in this one!

My silliness was obviously contagious…Skyler cracked me up in this picture!!

The weather was cloudy while we were there but in the 70’s so we were still able to play out on the beach and look for shells…

The waves were pretty wild so we originally just planned to have our feet in the water but we got nailed with a big wave…and it was crazy windy!!

Asher was proud to write his name in the sand…

And Nathan was proud of his sand volcano!!

The water was a little cold one day though😂😂

We spent another day walking out on the pier which was also a lot of fun!

My dad took pictures from the beach of us all out there!

We saw about ten dolphins playing around and got to hear them too which the kids thought was super cool…and so did I! Not to mention the breathtaking views!

And while I wasn’t too sure how New Year’s Eve would turn out…it ended up being the highlight of our trip! The Panama City Beach beachball drop…10,000 beach balls would be dropped in the streets at 8pm! We had heard this event had brought up to 50,000 people in the past so I was very hesitant to go with the young kiddos even though it was designed for families. We reviewed strict rules that Leah and Asher were to be with us at all times, no roaming ahead of us and always holding on to our hand. Pier Park was just down the road from us so we walked down plenty early!

Tim then kicked the family out so he could have a solo picture with surfin Santa!😂

I might see now where my girls get their silly poses from!! Haha! I was so excited the entire trip!

The original plan was that I would stay off to the side with Asher while Tim, Skyler, Nathan and Leah got into the crowd to try and get some beach balls. The kids went and got their spot…right under the balls!

As it got closer to the drop, Asher and I decided to join them in the streets. Actually…Tim had to talk me into coming over by them and I am so glad he did! I told Asher to wrap his arms around my leg and no matter what…not to let go. I mean, we had heard some wild stories about how crazy it got so I was just ensuring that our kids would not get separated from us!! Soon enough, people started to volley really big beach balls!

And then shortly before 8pm we did the countdown and 10,000 balls came falling down!!

In the midst of grabbing the beach balls, we completely forgot about the fireworks that were scheduled to follow!

It was an absolutely surreal moment for me and I couldn’t help but tear up as I watched the expressions of pure amusement and joy on all four of our kids’ faces. A moment they would for sure always remember!!

And to think we wouldn’t get any beach balls!!!

We then rang in the New Year at midnight sitting out on our balcony watching the fireworks they shot off from the pier! Absolutely beautiful with the gulf crashing in the background!!

Overall, it was a great trip minus two minor issues! One when we were playing beach volleyball…Tim actually broke his toe but I’ll spare you that picture!

And the other minor issue was with our car. It had been acting up the last half of our drive down but thankfully Tim was able to figure out what it was, go get the part he needed and had it fixed within five minutes!! He had some extra support from my dad and their friends in case he had any questions!! Haha! Definitely a lot of great people down there willing to help out with anything that they could!!

Our final day there I went into my parents room to thank them and I couldn’t fight back the tears. I told them I didn’t know how to pay them back for all they had done while we were there and I couldn’t begin to thank them enough! My kids had so much fun hanging out with their grandparents and I was so grateful to finally see what my parents have called their second home for the last ten years!

Mom and dad know how blessed they are to winter in Florida and have always wanted to share that blessing with all of their kids and grandkids. The fact that Tim and I finally made it down with all four kids, and the fact that we all had a great time was the only thing my parents wanted from us. I couldn’t have asked for a better birthday/Christmas present!!!

Soooo, I am going to say it once more! Thank you Mom and Dad! Not only for this trip but for being an example of the type of parents God intends for us to be and giving God the glory in all you have…and in all you do! Love you💕💕