Started the Easter weekend off by attending PLC for GoodFriday, another intense and eye opening service!

Saturday we had my family over, 20 of us, everyone but my niece Mary who had to work. The food turned out great and as usual, we had more than enough!  

   Little kids had an egg hunt followed by the big kids. Aunt Sarah decided to pay $5 to the one who found the most eggs…wish I knew that was part of the deal before I hid the eggs! Everyone had a great time! But, ok, I have to confess, Asher MIGHT have gotten the most peanut butter cups in his eggs! 

    

 Sunday we got up and went to church. We were so excited to meet my parents at PLC. It was shortly lived as they disappeared 10 minutes into the service…it was about 15 minutes after that, that Tim leans over and says “I think your parents just ditched us…at church…on Easter!” Haha…they apparently had some issues come up at home and had to leave. Mom had whispered something and then shortly after they just disappeared! I thought they might have just changed seats but no, they were no where to be found…and they didn’t come back! Tim says they were just trying to beat the traffic 😉 Definitely a funny memory to share in the upcoming years. 

We then finished off the holiday by going to Tim’s parents for good food, great company and another Easter egg hunt! Asher was so excited as he ran up to the Easter egg, yelled “ball” then picked it up and threw it! Always a great time with the cousins!

   

   

Great weekend with great family to celebrate the resurrection of Jesus! Missed those who couldn’t make it and hope everyone had a great Easter! 

The heart monitor results came back and did show some abnormalities. I apparently have premature ventricular contractions, basically extra heart beats that occur before the expected regular heart beat. These beats interrupt the normal order of pumping and are less effective in pumping blood out to the rest of the body. This can be a common thing, therefore, no more testing or treatment is needed at this time…unless my symptoms get worse.

Again, I of course do not want anything to be wrong with my heart but I feel lousy. I am tired all the time, I want answers. And while they say these palpitations can be common in healthy people, they also say most people don’t feel them. However, I feel them quite frequently throughout the day but especially at night…and I am anything but healthy.

I’m frustrated because the last six months of my labs or the testing, whether for my leg or my lungs or my heart…all the tests never come back as a straight normal. There is always something “minor” to show up on the results that is considered to be abnormal, yet I continue to be told to just wait for my symptoms to worsen. I don’t understand why I must wait to feel worse when the symptoms I have now already interfere with my daily life. Regardless, I go to my heart doctor at the end of April to see if anything has changed, to discuss my results and our next steps.

I will admit…this is starting to wear on me. I was extremely grumpy this evening. However, we went to our small group tonight in which some great discussion was held as well as some much needed laughs for Tim and me. So blessed to have been introduced to such an amazing group of people who were able to help me regain focus tonight when discouragement was starting to settle in. It ended up being a great night after all.

Why can’t I figure out how long a month is?! Either way….WHO CARES?!?! 12:27am my monitor is flashing two of the lights non stop, something I’ve never seen before. Annoyed with this thing as usual, I went to check the “heart” phone to see if I lost the connection and…I am done!!! 

Minus the extremely irritated and itchy skin from where the electro pads were placed, this is a tremendous relief!! Haha! No more flashing…and tangled wires! Even better, kids and the hubby won’t be able to constantly hunt me down by tracking where those beeps are coming from 😉 

Now let’s pray that the results will bring some answers! Have a great weekend everyone!

   

I thought for sure once 12:30pm hit, my monitor would beep and flash the words “monitoring complete”, as about a month ago around that time is when I got hooked up, however, 12:30pm came and went. I reviewed the manual to make sure I did not have to turn it off myself but I had been correct in the fact that the monitor will indeed indicate when the testing is done.

Throughout the day, the anticipation was killing me….as bad as waiting those three minutes to see if the pregnancy test was positive back in the days…

  

Wayyyy back in the days…

I was constantly going back and forth checking the monitor, waiting for that message to start flashing so I could rip this thing off and ship it out, but that message never came. 

Then it hit me and I realized, while it has been a month that I have sounded like a dump truck backing up, being harrassed by this annoying, flashing and beeping device, a month does not necessarily mean it’s been 30 days, especially with it being stinking February! I got out my calendar and hesitantly counted out 30 days from my last heart procedure and you have got to be kidding…I have THREE days to go!!! And yes, my monitor began to beep at this point 🙂

Insulin pump to the left, heart monitor to the right and those annoying cords that hang from the electro pads plastered across my chest, constantly getting in the way of everything! I guess if this is the worst of my day, I can’t complain 😉 

 

Today was the start of more appointments in Iowa City again for the next month, and it began with dermatology.  I was referred for a second opinion in regard to my hands and fingers due to the extreme cracking and nasty indents in my fingernails. As the med student came in and introduced himself, he began flipping through the few pages I had filled out due to me being a new patient.  He looked up at me and says “so overall you are pretty healthy” and I burst his bubble by replying “not really.”

This of course led me to give my routine speech that I have a rare disease, I have 6 stents in my SVC, 2 stents in my PA, I have mild hypertension, it affects my lung and my heart and blah blah blah.  However, as much I as enjoy “the look”, his reaction was even better…it was the look of interest!  He would scribble down notes as I explained my disease then he began to examine my fingernails.  Every so often he would simply say “interesting” as he continued to move my hands back and forth to view them from all different angles. He did say that my fingernails do have the characteristics of a person with heart and lung diseases, therefore, he felt my FM was the culprit for my hands being so bad.  As he was leaving, he said he would have to research my disease and stated he would be back in to see me with the doctor.

Shortly after, both doctors returned and I reviewed my illness all over again.  This doctor also agreed that the curves in my fingernails were due to my coronary and pulmonary conditions, however, he pointed out that I also have a couple more issues going on. Go figure! As he was examining my hands he did notice I have extremely dry skin and then also pointed out that I do not have any cuticles.  Ok, sorry, this probably sounds like such a disgusting post…and it is! ha!  He went on to explain that lack of oxygen, which is a huge problem with my disease, can cause the damage that I have in my nails. He went through a list of ointments and lotions and creams that I will now make a part of my daily ritual. I will apply one ointment at night, two different ones in the morning, then yet a fourth one throughout the day. I did point out I have little children at home so constant hand washing is sometimes a necessity! He told me to do the best that I can. Personally, between my diabetes and my FM, I have enough medical junk to keep track of throughout the day but whatever, I guess if this helps, it will be worth it! Plus, I mentioned to the doctor I just want to be able to paint my fingernails again!! Then awkward silence followed 😉 While, the curving and some of the denting of my nails may not improve due to my FM, some of these ointments should help with the skin and the cuticles.  The hope is that I apply some of the lotions to my cuticle area, as he explained that is where the growth of the nail begins.  If we can get that area fixed up, hopefully I can begin to grow healthier nails and at least have some improvement with the appearance of my nails, not to mention improvement with the pain I feel at the slightest bump of my fingers.

Of course, the best part came at the end of my appointment as the doctor explained that the nurse would be in to take pictures of my nails.  This will show them if any progress has been made when I return in eight weeks for a follow up. As the nurse is taking pictures, the first med student takes out his phone and asks if he can take pictures as well.  I looked at him and he replies “it is for my own study” then jokes “no worries, it won’t end up on Facebook or anything like that.”  I of course told him that was fine as I was a medical mystery so if he wants to study me, go for it! Haha. I find that the doctors I had today are the best type of doctors…just like Dr. Hornick and Dr. Rossen.  They might not necessarily know all that is going on with me, but they are eager to research and see if they can’t figure it out. And with this disease being so rare and difficult to live with, I am willing to do whatever I can in order to help doctors find answers.

On another note, tonight is my LAST night with this heart monitor!!  I cannot wait to ship this thing off in the mail and even more, praying the results will bring answers to explain my continued symptoms of extreme fatigue, heart palpitations and shortness of breath!

Pretty boring stuff tonight, but for me, boring is good. I am happy with the way things turned out today. It is frustrating knowing that my fingernails may not get better completely, but we are at least trying something. It definitely beats them telling me there is nothing they can do and simply turning me away!

My FM friends and I have often shared stories about the “look” we get when explaining our illness to doctors and anyone in the medical field. Due to us being so few, chances are when we go to a new doctor, they have never heard of the disease. Their reactions are often priceless and to be honest, sometimes this is what gets me through some of my appointments.  

We get the “deer in the headlights” look, the “I don’t know what to say” look, the “confused but I’ll pretend like I know what that is” look, the “I’m sorry” look or the downright “what the heck did you just say” and “frightened” look. Well today I think I was able to pull off almost all of those looks in one shot!

The other morning I woke up with quite the allergy attack and sinus pressure. I continued to push through the day and tried allergy and sinus pills yet the sneezing, watery eyes and runny nose continued.  This morning I woke up with extreme, I mean extremely painful pressure in my left eye and on the left side of my head and nose. To the point I was laying in bed cupping the left side of my face with my hand. 

As much as I dreaded it, I was absolutely miserable so I went to the walk in clinic. Finally after over a half hour of waiting, I get called to a room and the fun begins as the nurse reviews my medical history. First off, I was very impressed that she pronounced Fibrosing Mediastinitis correctly. After going down the list of health problems she joked saying, other than that I am pretty healthy. 

Shortly after she left a doctor came in and explained she was a med student but assured me no worries because she’s had over 30 years of practice. Ok, I did giggle to myself as she began reviewing my history, knowing no number of years could prepare her for what I was about to explain to her. 

She started her exam by checking my vitals and then asked me to take off my heavy sweatshirt to listen to my heart, which I did. There was my heart monitor attached to my jeans and my electro pads were peeking out from underneath my tshirt. This led to several questions. As she began listening to my heart and lungs, even more questions. Why is my breathing so bad, why am I not getting full breaths, why am I not moving much air. She sat down in front of me waiting for my answers so I simply said my illness affects my breathing, especially when I am sick, hoping she would give me the “confused, but I’ll pretend like I know what that is” look. Nope, she asked me to explain what my disease was….crap!

I went on to say that for some reason my body developes an abundance of scar tissue and that scar tissue crushes the organs in my chest….and there it was…..the look…or I should say the lookS! Haha, her eyes got wide “deer in headlights” look, she pulled her head back as if I was going to hit her “frightened” look and her mouth opened so slightly “I don’t know what to say” look but then her face softened and she just stared at me “I’m sorry” look. She followed by saying she would go get the doctor. Yep, I’m guessing she’s never seen anything like this in her 30 years of practice! 

Her and the other doctor came in and again, the doctor listened to my heart, checked my vitals and then asked what my blood pressure was. The first doctor reported it was good then left the room for a second. As I was discussing my situation with this doctor I did share I had right pulmonary hypertension. She quickly jumped in stating I probably had them check my blood pressure on the left arm. We both laughed and I was impressed that she picked up on that right away.

Back to the reason I am there. I was diagnosed with acute sinusitis and bronchial issues, aka…sinus infection. Due to the fact I don’t handle medications well, I let her know zpacks work best for me however she said she usually doesn’t prescribe that for sinuses and got out her list. 

The first 3 meds at the top of her list were out due to me being allergic to them. A couple also didn’t work due to me being on Plavix. She then said the zpack is 8th on the list so began naming a few other ones. I pointed out that one of the meds she mentioned made me extremely sick so yep, I was ordered a zpack.

As we are figuring out medications my heart monitor is beeping. The doctor asks me what that means and I simply replied “nothing, it beeps all the time” and again, the “I don’t know what to say, frightened” look.

Hoping meds kick in soon and I can start to feel better. This week was the one week I didn’t have any tests or appointments in Iowa City so go figure I end up at urgent care! Oh well, tonight ended up being very entertaining for me and I was able to have a little fun in the midst of my lousy situation!

Tomorrow is a new day!

Shortly after Tim and I were engaged, he got a job overseeing two different hog buildings. Now, me growing up in Cedar Falls and being a city girl, I thought it would be fun to feed the cute little baby pigs. I would help Tim here and there with chores but, those cute little pigs turned in to 300 pound hogs that we had to load on to semis and at that point…those pigs….not so cute! 

Tim later found a foreclosed acreage with a calf building and bought it. After we had been married for a few years, he got the calf barn up and running. We have had our own cattle operation ever since. I thought cows would be so much cuter than pigs, and smell better so this will definitely be a lot more fun. Again, I found out cows are actually not the smartest animals….or that much fun!

I have helped Tim out as much as I can in between my own job, the kids and on days my health allows it. Today was one of those days where I knew he needed help doing a few jobs in the building so I had been prepping myself all day for when that time came. 

I will spare details, but these are not fun jobs, jobs that Tim felt kind of embarrassed doing in front of me when we first got the business running. I was experiencing a whole new life….a much harder life….country life! But, I wouldn’t change it for the world!

As I was helping Tim today, my allergic reaction to cows kicked in probably at the worst time possible. I continued to sneeze and sniffle while my eyes watered, wondering why I was doing this. I’m wearing a heart monitor, I’m allergic to cows yet here I am getting up close and personal. A lot of my family and friends question why I do this, why I put myself in such a position…or even how I can do this. I often share very minimal details with them yet the awkward silence still follows, indicating they want to say more, but don’t. I have sensed that they think I’m crazy for helping Tim, or that Tim forces me to help him but the simple fact is, we are married, we are in this together so if he needs help, I’m going to help him. Plain and simple.

So, today as I was watching Tim work, I couldn’t help but think of the sermon we heard in church this morning. We heard the story about how Jesus washed each and every one of his disciple’s feet…the week before he was going to be crucified. The fact that Jesus stooped down, to wash their feet, a slave job, to some of those who stole from Him and who would betray Him….that is the true example of love and Humility! 

A great saying today was “God can ask us to do anything, because He already did everything for us”! 

As I’m sneezing and starting to feel pretty miserable, and as Tim is getting dirty and frustrated, I brought up the sermon and we both laughed. We once again found ourselves in a position where we could relate to what the pastor was saying. Pastor Chip had said because Jesus did everything for us, that there was nothing too low or too painful that Jesus could ask us to do in order to serve, and in that moment, Tim and I felt we were the prime example for that! 

We were able to finish the job and while my eyes are still a little puffy and I continue to sneeze, I am surprised to say that my heart monitor did not go off at all while in the cow nursery! 

I am extremely proud of how hard my husband works, and how he does some of the not so pretty tasks of his job. I don’t like that he sometimes feels ashamed or embarrassed to talk about his job because he has no reason to feel that way. Livestock is a difficult and time consuming job that takes a lot of hard work and determination. 

“Humility isn’t thinking less of yourself, but thinking of yourself less”. I am thankful for Tim’s dedication to his job, and for introducing me to an amazing new way of living! Funny how cows can put a new perspective on things and truly be a blessing 😉

 

I am as bad with wearing this sweatshirt as the kids are with their Under Armour sweatshirts!! It is so comfortable and basically the only time I take it off is to wash it!! 

We do have a few leftover shirts and then we also need to order some so if anyone is interested in buying a t shirt, they are $15. The price is what we actually pay to make them so we get nothing and can even get receipts for you 😉 

This is just one little fun way to raise awareness…for a not so fun situation!

Just message me if you are interested in buying one…the sweatshirt saying is mine though….I can’t help it, I crack myself up sometimes!  😉

After a slow start with the courier today, I think the article is a go! The reporter ended up having a glitch in her schedule so she actually was not able to meet with us and instead scheduled a phone interview later in the day.

The photographer did show up as scheduled and we did a few pictures with Leah and Asher outside with the cows. We also took some pictures of us all, minus Skyler and Nathan due to them being in school. That was pretty much it, we thanked him for taking the time to come out and then we were done! Tim was a little disappointed as once again, he mopped floors and cleaned house, just for nobody to really show up! Haha, yes you small group people….I’m referencing this to you! Honestly, I have a clean house so I’m good either way 😉

I also think the phone interview went well as the reporter had a lot of good questions in regard to my actual disease. She will also be calling some of my doctors in Iowa City for their input on the disease for further description and information as well. 

I really appreciate my in laws for contacting the local papers in order to help me bring awareness!! 

As far as my heart monitor, last night was another long night. I did end up calling this morning to ensure that I didn’t have something hooked up wrong as last night was a continuous night of beeping and flashing lights. The lady on the other end of the phone confirmed that they are receiving the recordings. She went on to say it is most likely beeping to indicate something my doctor set up for the monitor to alert them if certain symptoms occur. Well, I guess on the positive, that’s reassuring that I’m hooked up right!

So overall not a bad day! The weather was gorgeous and got to watch little miss Leah at watch night for dance. I am so proud of how well she listens to her instructors and tries her best to follow the dance steps. 

I am also hopeful that this article is one step closer to bringing awareness to Fibrosing Mediastinitis! 

Good night, or in other words, let the beeping begin! 😉

Instead of what does a fox say….get it? Like Tim says, at least I crack myself up!! Haha

Anyway, it was pointed out to me, of course by Tim, that I seem bitter about wearing this heart monitor…and yes, yes I am. I have had an insulin pump attached to me for years so I really don’t know why I’m struggling so much with this thing.

Maybe it’s the fact that it constantly seems to be beeping, implying that my heart is doing something that needs further looking in to. Maybe it’s the fact that when the nurse hooked me up she said one battery might last the entire month if there is low activity, yet I just put a third battery in after only 10 days. 

It beeps in the morning, it beeps throughout the day and it beeps in the middle of the night, which makes night time a lot worse. First off, the monitor has a constant flashing green light to indicate it’s recording. When my heart does something funky, the monitor beeps and then flashes a fast blue light to show that my results are being transferred to the phone, which is a calling system where my report is sent and reviewed. Once transmitted, the monitor goes back to a slow consistent green flashing light.

 Luckily, my symptoms have not been severe enough that I have had a call from them encouraging me to go to the hospital….but, I can’t help but find myself in the position that I so desperately hate being in…hoping, praying, that my results of this test will show something wrong, just so doctors have answers, proof that I am sick, so they can “fix” me, again. But 99% of the time, this is not the case. Maybe I am bitter with the fact that my results will show something, but whatever it is, even though it is something…it really won’t be anything because “it’s to be expected with FM”, something I just have to live with. 

I have pads stuck to my chest with wires dangling which then causes me to pull on them or get twisted up with every attempt I make to get comfortable at night. I have my insulin pump that brings on the same frustration yet now I have to make sure my tubing from my pump doesn’t get entangled with the wire from my heart monitor. Even better, how attractive do I feel when I have to ask my husband to help me reapply the electro pads to my ribs…who says romance dies after a few years of marriage?! 😉

I will admit that the last couple of weeks have been hard to push away the bitterness, the anger, the disappointment with no answers….and the fear with no answers. I have to somehow come to terms with the fact that I am going to have bad days. When first diagnosed with this disease, I struggled with my SVC symptoms but now with the heart and lung symptoms, this is a whole new ball game. I am really having a tough time accepting the limitations these new symptoms are putting on me. 

 Today I worked for my job and then organized Leah’s room but that being so minimal, still resulted in me having to lay down to rest, only to wake up 2 hours later! These are the days that I will solely have to rely on God to get me through, simply because I am not strong enough to overcome the really dark days of this disease on my own. These are the days when I pray more and also try to listen for what God has to say.

I still have so many people calling or messaging me to say they are sorry for not really knowing just how bad my situation is. I try to comfort them by saying I really was doing okay at the time we were in contact, but my FM has progressed. I never like to burden others with my problems. I do like sharing my story but I don’t want it to change the way people look at me, or act around me, but I know it does change things.

In all honesty, I have been dealing with all of this junk, just different symptoms, for so long that to me, it is no big deal. Yes, my situation can be life threatening and very serious, but to me it’s just another day, it’s a part of my “norm”. This, I know is hard for people to grasp, and actually this probably is the thing that upsets Tim the most is when I blow my situation off but I truly am thankful my situation isn’t worse. I keep telling myself God has a reason for all of the tremendous pain in our lives…

So tonight will most likely be another night of little sleep. I tend to sleep two or three hours at a time before I wake up and have to regroup and reposition, try to cover that dang flashing light up, maybe check Facebook and go back to sleep. Really though, what did I do before Facebook?! 

Also, for a final note, the Waterloo courier will be coming to visit with me tomorrow in regard to living with a rare disease. My mother in law was kind enough to send out a letter to the local newspapers in order to help share my story for rare disease day. While that day has come and gone, she still got someone’s attention so it worked! My whole reason is to bring awareness to Fibrosing Mediastinitis because more people are getting diagnosed with this disease! Please pray that this article will help to bring awareness in order to start research, which can lead to better treatments and cures for the next person to be diagnosed. 

I do not like attention on myself because in all reality, I am actually one of the few fortunate ones with FM as it only affects the right side of my heart, my SVC and only my right lung. That tells you how bad this disease can really get if my situation is considered to be fortunate. Stents have helped me but so many of my FM family, no treatments have been successful for them. 

On the other hand, new clinical studies are starting to show positive results in stopping or at least slowing down the growth of these masses so we need to keep pushing for research and for answers!  I guess if I need to step out of my comfort zone in order to hopefully help someone else down the road, and to bring awareness to this illness, then I guess it’s time for me to gear up and do what I need to do!

I really think God is trying to tell me something if I just pay close attention. Look at the picture of notes Skye took for me last week at church since I wasn’t able to be there due to a bad day…How Do We Stand Strong and Win the Battle? 

Sweet dreams 😉