Today I got a visit from my mom and two of her cousins Suzan and Diane. They came all the way from Dike to bless us with a delicious meal and dessert! Unfortunately Tim was not able to be here due to work so while he is sorry that he missed them, he does appreciate their thoughtfulness…and the food!

As long as I can remember…these women, mom included, have been crazy! Haha! In a good way of course and these are only three out of how many Paige’s?! They truly are sincere and simply say things the way they are.  All of the Paige reunions that were held at great grandpa Virgil’s farm, always came with a lot of laughter! I specifically remember shooting glances at my sister and brother Michelle and Ryan along with our cousin Julie indicating that there was something wrong with our family. Ha! All of us younger cousins would eventually sneak off to the basement where we engaged in some pool or played with Patty, great grandpa’s Doberman Pincher. 

It was fun to see them today especially because they are exactly like I remember. I think we were laughing from the minute they stepped in the house until they left. Picture time is always such a struggle though isn’t it?! 😉  

Oh, and I also have to admit, it was weird seeing Skyler have the same look on her face that I did when growing up because I know exactly what she is thinking! 

When mom, Diane and Suzan left they were able to get a hug from Leah and even Asher willingly reached his arms out to them…after a little hesitation. The only thing Skyler said after they walked out the door, however, was “I have a feeling that’s going to me, Emma and Ashley”…and I have a feeling she’s right! Haha 😊

The food was absolutely delicious! So thank you again Suzan and Diane for thinking of us and going out of your way to provide us with a meal! 

And thank you for encouraging me to keep writing and for letting me know you are reading my blogs! Putting myself out there for everyone to read is difficult and I still have doubts if I should be doing this. But hey, I know I’ve got two dedicated readers so I will keep on keeping on 😉 

I must say though…the one disturbing thing I did note from our visit today…I think those ladies handled all the stairs in my house a lot better than I did!! Haha. Thank you again so much for taking the time to stop by. And Skyler really liked the angel food cake…oh wait, but it wasn’t as good as grandma Ruth’s…my third dedicated blog reader 😉 Tim and I are blessed to have such amazing family and friends!

  

OK, so the weekend really didn’t go as well as I had hoped for. I continue to struggle with fatigue and that dang chest and head pain has been indescribable for the last few days…which is fine because even if I could describe it nobody would really understand anyways.😉

My oldest nephew Tyler’s soon-to-be wife had a bridal shower and unfortunately I just wasn’t feeling well enough to make the trip on Saturday. This is when frustration sets in, when my disease flares up and prevents me from being somewhere fun, somewhere spending time with family!

On top of all of my FM symptoms, Saturday night my achy heavy, hard to describe, pain in my right leg was back keeping me up and extremely restless. Desperate for one part of me to feel normal, I decided to apply coconut oil to my leg after reading some success stories in regard to the symptoms I was experiencing.

First off, that stuff is oily!! I had just tried a little bit but wow, a little bit sure goes a long way. And due to having so much more than I thought, I rubbed it over both legs and feet, however, due to it also being more oily than I ever imagined, I held my legs straight up in the air to avoid getting any on the couch and panic set in…now what? I can’t move or walk, I’m all greasy!! My legs were glistening and Tim then of course walks in and also panics saying I need a sheet. But then he stops, shakes his head and says ” Nevermind, I’m better off not knowing what you do, gnite” and he left me there! Ha!

I can be skeptical about things working, especially when doctors can’t seem to bring me relief, but my legs did eventually start to feel better and I was able to sleep the rest of the night through! Regardless if it was the oil or not, I will probably try it again, except in an even smaller amount! Any other suggestions are appreciated as the oils are new to me…and I thank God for these idiotic moments simply because it gives me and Tim something to laugh about. Haha! I love my husband for being so patient with me 😉

Then Sunday, I also skipped out on lunch with the in laws hoping that the extra rest would ease some of my symptoms. Instead of getting much rest, I cried. It was during this time of being in such a still house, no kids off in the distance to listen to, but complete silence, that I realized I haven’t really been alone to “think” since discovering all of these changes that are happening to me.

And until Tim took the kids to lunch at his parents, the reality hadn’t really sunk in…the disease I thought was done, the damage I thought would be no more…continues to grow, it continues to affect my life more and more each day…and nobody understanding the extent of just how much. But now, I’m starting to look sick…

Being left with no distractions gave me a chance to cry and reflect and appreciate what is going on in my life. I also took the time to reread a chapter in Daniel as the book of Daniel is what we are studying right now in our small group…such a powerful and influential book to read and of course at a well needed time in my life!

The silence also brought out my stubbornness in the fact that I am not going to allow this disease to win. I am not going to accept this as a way of life and I am not going to accept the fact that there is nothing anybody can do for me.

I am happy to say this was not a pity cry but simply a chance for me to come to terms with what is going on, to let everything sink in as well as to move ahead to search for answers. While I will continue to focus on what I can do, I’m still going to push forward to do the impossible. And with God in my corner…anything is possible! Wouldn’t it be nice if the next time I got a chance to be by myself…I could do something fun and actually enjoy it?! 😌

I was able to do some yard work and pick up around the house at my own pace, as well as to see my husband act like an…well you just see for yourself! This was our weekend and again, something I definitely cannot complain about…this is how we make our own fun out here on the farm…redneck fun that is…thank you Tim for making me laugh…although Asher didn’t enjoy himself as much as daddy thought he would 🙂

So I emailed my doctor at the beginning of the week hoping for him to interpret my ct scan and lab results. Unfortunately I am still waiting for an email or a call back and will just have to try again next week. It’s one of those things where I want to know but at the same time, don’t really want to hear what he has to say. 

The ct scan was a comparison from the last one I had in 2013. One change noted was that I had pulmonary stents and those were open, no surprise. Another change noted was in reference to my bronchial wall thickening and then also a change in one area of my lung…findings possibly representing a “developing infection” which I assume is related to my FM but I want to clarify what “developing infection” really means. 

And then there were also more findings noted in regard to my right lung indicating more scarring. I also had masses on my spleen but they are completely calcified. The breathing tests also indicated moderate obstruction, which I had already known, well I thought it was mild but whatever, doesn’t really matter. But, nothing mentioned about my left lung having damage so that is a positive! 

Part of me thinks this is good news that he’s in no hurry to discuss the results meaning nothing to be too concerned about with little changes, but then another part of me wonders if there is something he needs to discuss with my other doctors before calling me. Obviously the scan showed that the masses are still growing but hopefully just at a slow rate…I guess that is what I want to hear? 

I did also get my sleep study scheduled but not until September so they put me on the cancellation list. First off, that is Tim’s birthday month so I am hoping they will call me in sooner as I would hate to take away from his special MONTH 😉

So, basically no real clarification on how much damage my disease is doing minus the fact that the scan did indeed show more growth…which unfortunately is to be expected 😕 

With my diabetes, I have continued to be in contact with my doctor and my sugars are finally starting to improve after some major changes to my insulin. Oh, and I am experimenting with oils and healthier eating, even making brownies with coconut oil…but is that really healthy?! Ha! And I even shocked my coworkers for out to eat Friday…I brought my own lunch instead (not the best but a start, and healthier than fast food) as well as splurged on a pop…after drinking my lemon water of course!! I think my coworkers are starting to get concerned now! Haha!

  
As far as my book, also waiting patiently for Westbow to get back to me in regard to the next stages so this too is going slower than I planned….good thing God’s plans always turn out better than mine! 

So, I am going to go enjoy the weekend with my family and try to figure out a game plan on how to train for my upcoming 5k! A 5k and carrots for a snack…desperate measures for desperate times! 😉 

Have a great weekend everyone!

This might be the first summer our family doesn’t get to take a vacation so Tim and I were trying to think of a few fun day trips we can do in between chores. We thought about the Omaha zoo or the Minnesota zoo and even considered St. Louis but after more researching we decided those places would be impossible to do within our 12 hour time frame so…we went to Amish country! Haha! 40 minutes away! I was able to take a vacation day so I loaded up the kids and picked Tim up on the way! Roadtrip!!! Let the fun begin!

Minus the hot weather, no air conditioning in the van and gravel roads which prevented us from rolling down the windows…everyone had a good time! I did question In the beginning, however, just how long this trip would last with Leah and Asher. 

The VERY FIRST store, Leah had shown us a big bag of gumballs she wanted and we told her to just put them back and wait. She walked back to put them away with Skyler and Nathan while Tim, Asher and I continued to browse. As I’m talking I hear something hit the floor and roll…followed by another one and another and then it’s very apparent that somebody had dropped a whole bag of something. For some reason I didn’t even consider it to be my kids and I looked at Tim and said “well that doesn’t sound very good.” Tim looked at me like “duh” and said “that was our kids I guarantee it.” Sure enough, the bag of gumballs had somehow spilled all across the floor…what a way to start the trip! We did later discover the bag did have a slit in it so with Leah carrying it, it must have finally just broken free! Ohhhh the joys of children…but she did get her gumballs after all because we paid for the bag and she was able to chew the few that were left!

Skyler especially enjoyed seeing all of the little children out working or playing in the fields! We also got to visit with a lady who gave us the whole history on one of the Amish families who have ten boys and one little girl! That right there tells me I could not be Amish! 😉 

The shops were great and the little kids were fun to visit with. The lifestyle amazes me with their simplicity yet extremely hard work! 

I was looking forward to some baked goods but unfortunately we did not come across a bakery that was open so we ended up with…a necklace Leah picked out, rock candy for the rest of the kids, homemade noodles for Tim, then virgin coconut oil, a Minnesota Vikings potholder and an Iowa Hawkeyes potholder for myself! Haha, what a combo right?!

   
  

 Those kids were too adorable though not to buy anything from! Probably the reason parents have the kids managing the shops! 

We then hit the Pizza Ranch for lunch…

  
Follwed  by Fontana Park where the kids had fun seeing the animals and painting turtles…as well as leaving their names and drawings on the white board to mark their presence!   

  

  

     

We were able to make it back just in time for chores! It turned out to be a fun little day and thankfully, it is just stairs and inclines where I begin to struggle, and the walking is never bad, so I was able to enjoy the trip without any issues regarding my FM! Not even a skipped heart beat with Skyler driving!!! And no worries mom…the van was stopped while I was pumping gas 😉

  

And now, I do have a request for some prayers as Asher goes to the ear doctor tomorrow for a follow up on his tubes! He continues to have problems with his speech and is still a very loud talker at times. Asher also has a raspy voice so there are concerns that he might have developed some nodules in his throat. Please pray that his tubes are still open and working and that his little “rockstar” voice will be nothing to worry about! 

I will now end with…miss Leah!

Wardrobe change and lipgloss…no better way to work with cattle…

 

It was one of those weekends that started out with relief of finally getting the tests done that I wanted, followed by frustration and ended in appreciation. After being in Iowa City all day Friday I couldn’t help but start thinking about all of the “what if” results that the tests might bring. It’s actually silly that I let this get to me because I have been in this same position how many times?! The symptoms affecting my daily life, doctors doing test after test with nothing to excuse my symptoms, and then finally, I get that one test back, always that bittersweet answer finally justifying my symptoms…more damage from my disease…all while nothing can be done for me.

This fear and anxiety of “what if” actually overcame me after spending Saturday night with my family at fireworks. We always go to the golf course because we can see great from there and as we began walking up the first hill, here came that all-too-familiar chest pressure but I continued walking. And then another hill yet I continued to push Asher up, slowly falling behind the rest of the gang.

Tim and the kids still wanted to go see if we could get even closer and I finally had to stop at the top of one hill as my chest and head were pounding and I had to catch my breath. Luckily it was almost dark so nobody could see how bad I really was struggling but I let that fear creep in. And then Tim and Skyler said they found the perfect spot so we all went over a couple more hills and finally were able to sit and relax…until they shot off the fireworks. By this time I was getting that cough from overexerting myself and my head and chest continued to feel like they might explode at any minute…meaning the extremely loud noise and bright lights from being so close to the fireworks did not help my situation.

As I sat there watching everybody else enjoying themselves, along with Leah in my lap, I couldn’t help but think how much do I really hold them back? What kind of wife and mother am I to not even be able to enjoy something as fun as fireworks?! Am I making any good memories for my kids? What if this is the best I will ever feel? What if this disease really does kill me sooner than later? What if Tim is regretting the fact that he vowed to spend the rest of his life with me…in sickness and in health?

While I am so happy my family had a great time Saturday night, I was absolutely miserable physically, which resulted in the rest of the weekend with me pretty much resting and wearing the most loose fit clothing as possible because my chest was so tight and constricted from all of that pressure…all because of searching for that perfect spot too see the fireworks. So stupid and not fair! I used to be so active…and I like to think I was tough…just ask my brother ☺️

Tim asked me how I was feeling the next day and if it had “really been that bad” on me. I again got extremely frustrated and thought he really has no clue what this disease does to me. He’s just like everybody else who doesn’t understand how much effort it really takes for me to get through the day sometimes….and he sees me every day!

This led to some tension and arguing because I felt so awful yet he couldn’t possibly understand…and I am definitely not one to show any signs of defeat…but this weekend I couldn’t help it. Tim couldn’t grasp why it had been so bad and simply offered to drive me next time because in all reality, there was no reason we had to take the course that we did…the spot was actually right by the clubhouse so we could have indeed driven there. And, I couldn’t give him an answer as to why I struggled so much this time…just a bad day I guess.

Anyway, I saw the frustration in my husband’s eyes as well…and I hate that more than going through this myself. So again I found myself thinking how boring I must be as a wife and how annoying it must be to live with me…and all of my health issues.

But then on my way to work 101.9 was on and the first thing I heard mentioned was the four military men that were killed in Tennessee and how all of the restaurants had started to set up a table in memory of them. How these wives and their kids and their families never got a chance to say goodbye to them. These women would give anything to be arguing with their husbands, to at least have them here by their side, and here I was taking life and the man God blessed me with…taking it all for granted…not appreciating how truly blessed I am.

Instantly, I started crying and I asked God to forgive me for letting such negative thoughts creep back in. I realized again that I was being selfish and I was starting to focus on all of the stuff that I couldn’t do…everything that is wrong. I was relying on myself and I was not trusting God in this situation.

Later on in the day, I was faced with the choice of letting fear overtake me again as I was able to read all of my lab work and ct scan results in my-chart. I stopped and prayed and decided I would not jump to any conclusions until I can discuss it with my doctor. I am not going to waste anymore time worried about something God already has played out for me. I do think the results might be able to provide some answers as to why I don’t feel well but again, I will just have to wait and talk with the doctor.

So, after a long weekend of taking pity on myself the only thing left to do…I signed up for a 5k! Haha! While I felt absolutely miserable for a couple of days, it did not kill me and I am feeling better today. I am ready to push myself even harder!! Well ok, I’ll be walking while I’m pushing Asher in his stroller but still! I am not going to give up or let this disease get the best of me. 

Again, I don’t write this for attention and I definitely do not want pity but hopefully you can see how this disease can so easily overtake and consume my life when I don’t let God in to be my strength and my hope! I made the weekend what it is and the only reason it was a bad weekend is because I did not trust God. I lost focus of the big picture and what He really is doing with me. 

And, thankfully the bad days don’t last and God puts what and who I need in front of me at the exact times when I need to be reaching out to Him the most. I can regain focus and trust knowing that God has His hand in all of this. Look how far He’s brought me…my story isn’t over yet;   Get it?? The semicolon? ☺️

Well, overall, today was a decent day and at least I am working towards finding some answers! The morning started out with the pulmonary function tests and this time I actually had three different breathing tests to do. This resulted in some uncomfortable chest pain and that head pain for the remainder of the day…but I was able to push through and get it completed! It was then time to talk with the doctor! And there was a lot of info so I will do my best to explain it all!

I again reviewed my symptoms as well as new symptoms I’ve been experiencing that I don’t feel are FM related. Dr. Hornick verified my feelings by stating I’m “a complicated case” simply because I have too many other health factors to contribute to my symptoms as well. Tim says he could have told the doctor I was complicated years ago!! 😉 Dr. Hornick said he is going to dig deeper and basically look at every possible scenario to make sure we aren’t missing something else.

The medical student had shared with us earlier that due to my PA stents being open that they were thinking my symptoms were most likely now due to my lungs and not my heart. When we met with Dr. Hornick, he went on to explain that my pulmonary function tests indicate that I do have obstruction in my airways however there was no real significant change from the last time. This is good but at the same time he warned this is what histoplasmosis does…testing may indicate minor damage or even normal results however the symptoms are very real and severe. They simply don’t know how extensive the damage is just from these tests. With my lung function I am hanging on tight at 67 which is mild obstruction..but 65 and under is moderate obstruction. I basically had the same results for my pulmonary arterial hypertension…so right on the line for moderate with all of my problems.

We then talked about some of the experimental drugs that have been used for this disease and I did have a feeling I would not qualify as a candidate simply because I’ve had this disease too long. Dr. Hornick explained that while these new treatments have shown progress for others, he has also seen where the masses did shrink yet the symptoms remained. Nothing can fix or reverse damage that has been done. And again, I know I probably will never benefit from a cure or treatment options that prevent damage but I really hope that my body and my journey is teaching doctors how to help the next person who is diagnosed with this disease!

So anyway, it was decided that since I do have signs of obstruction in my lungs that he would order a CT scan of my entire chest and then go from there. He agreed he would like to see how the masses look now. I did not ask if this means both lungs might now be affected but I am pretty sure the damage is still constricted to my right lung…at least I am praying so…

As far as my extreme fatigue, he again wants to make sure nothing more is going on instead of just blaming my FM for this problem as well. He ordered a sleep study but unfortunately this cannot be done at home. He will be setting up a night for me to go into a clinic and have this test performed. Definitely sounds interesting as I will have wires connected to my head and a tube in my nose??? Tim tried to convince Dr. Hornick to allow the kids to stay the night in the clinic with me so that I could have a more realistic environment but that didn’t fly! Haha!

So, a lot of great clarification about what my body is doing, and while nothing can be done for my symptoms, I at least am getting answers and a better understanding of what is happening to me…and I had someone agree that I really am not a wimp or exaggerating how lousy I feel at times! 

Once we were done visiting I did the six minute walk which I typically have no problems with and then I moved on to do lab work. I finally finished the appointment with my CT scan! For some reason I was prepped and then sent back out to the waiting room until they were ready for me…  

So, I will be anxious to see what the CT scan results show and I should hear back early next week. And while my husband didn’t take me to Brett Michaels…I did get to help with chores…so it equals out right?!  

Topped the long day off at the car show in town with the kids so I really can’t complain about how the day turned out! God is good!

   
 

Skyler being Skyler…. 

    
Thank you all for your prayers and kind words! And thank you mom for helping with the kids but I can’t believe Asher broke your toe!! Have I said how much I love and appreciate you? 😉

Well, I am back at it tomorrow! 9:30am I will go through a battery of testing most likely including labs, lung scans and the ridiculous breathing tests. I fail those every time but always get a compliment for my “good patient effort.” But seriously, who does pass those tests?! For any of you who have done them…you know what I’m talking about…and it’s impossible! I mean they put a tube in your mouth so that your mouth is wide open, then basically put a clothes pin on your nose and expect you to breathe normal?!

And even worse the tech person is encouraging me by yelling “go go, go, go, keep blowing, keep blowing, go, go, go” because I have to breathe out as much air as I can into that tube for as long as possible. I’m sorry but when someone is yelling at me like that the only thing I want to do is laugh! But, this is probably an entertaining job on their end as well! Oh, and Tim came in one time to watch me while I did this test…and never again is he allowed back!

I will also be talking to my lung doctor about options…if there are any. Again, I understand that with this disease I am going to have good days and bad days but I have a few simple questions I hope they can answer. 

With my SVC stents, when I got the stents I felt instantly better, and if the stents are closed I usually will know it, but once they’re opened back up I always get that instant relief. With my PA stents, not so much anymore. I still experience the deathly fatigue, heart palpitations, chest/head pressure and shortness of breath. I felt amazing the first several months after receiving my pulmonary stents but now, for almost a year, I continue to battle symptoms as if I don’t even have stents in my pulmonary artery…yet the stents are open.

Doctors have said my disease is progressing, my numbers have been higher to indicate congestive heart failure(but with my disease, that’s supposedly expected so apparently the numbers can be even higher before I should be concerned), I have pulmonary arterial hypertension and even on one of my reports it said COPD…yet none of these issues are being followed up on. 

The last CT scan of my entire chest was back in 2013 which indicated several non calcified masses throughout my chest and even on my spleen. Yet again I have not had a CT scan since 2013 to determine if the non calcified spots have grown or spread. My Iowa City doctors tell me my family physician should be able to do that CT scan but my family doctor basically feels anything to do with my FM should be done by the doctors in Iowa City. I really do love all of my doctors but again the doctors I see are specialists. I’m looking for a doctor who can see me and view my FM as a whole, not just a lung specialist…or the heart specialist…or the interventional radiologist. And in August…chalk up two more new specialists I will see! Unfortunately, there aren’t many of those out there who specialize in FM as a whole.

This disease is known to grow very slow, however, it can also attack very fast and I feel that is what mine has been doing since 2013. I also want all of the other issues with the congestive heart failure and hypertension to be monitored…I don’t want to just “sit on it” and wait until I get bad enough to need intervention. Yes, I can see the doctor’s point of wanting to help me with doing the least amount of damage to my body but…my body is damaging itself…my symptoms are present, my numbers are borderline…my disease is affecting my day to day living. 

It’s time to get proactive, to learn more about what my body is doing and to at least monitor the problems I am having instead of running one test which indicates something and then just letting it be. All the labs I do for regular panels on a routine basis…just add these tests in with it! And all of the non calcified masses in my chest, let’s do a routine CT scan of my entire chest annually to see what this ugly disease is doing. Are those masses growing with the potential of damaging my one good lung or to do more damage to my heart? 

Its not that I necessarily want intervention…but I do want to stay on top of these potentially dangerous symptoms so that one of these times we don’t  discover that I waited too long and intervention is no longer an option.

So please say a prayer that I will find some answers or that they will at least do this one CT scan of my chest I’ve been wanting to do again since 2013. That would give me a good indicator as to if and how fast anything else might be progressing. Or if these symptoms are the results of the calcified masses and nothing indeed can be done then ok…but at least we are monitoring and following up instead of just waiting until something else possibly more severe happens. 

And also pray for Tim because I am usually not the best of company on these trips. I know God has this all figured out and this too shall pass but that doesn’t mean it’s easy. Oh, and if the day doesn’t go well maybe Tim will take me to the fair to see Brett Michaels  😉

Below, I am attaching a blog written by Sharon.  She has been a huge advocate for her son Cody who has FM, as well as an advocate for all of us who are battling this disease. Her blog was hard for me to read because the frustration, the anger, the sadness she expresses…I have felt…but only as someone fighting this disease…not as a mother having to watch her child, no matter what age, dealing with something so horrible.

With that being said, I just want my parents to know that I love them for all of their support over the years, for all of their faith, for their love and for their courage as they continue to watch me have good days and bad days of dealing with this nasty disease! Having a rare disease comes with tremendous barriers and like Sharon says, with less than only 1% diagnosed with FM, nobody really cares about research. 

Every time I read Sharon’s posts I cry because I could not imagine having to watch any of my children go through something like this, being thankful that I have this and not my kids…and then it dawns on me…my own mother is in Sharon’s position so I know my mom can relate to what Sharon might say. Please keep Cody and his mom in your prayers. And to my mom and all of you other moms who have been in similar situations of having to watch your kids whether younger or older endure so much, you are all strong and amazing moms…and truly appreciated by us kids!

Love you mom 🙂

Spending the morning with Leah and Asher at the doctor. Not the greatest news received in regard to my diabetes so prayers are appreciated as we try to get my sugars figured out. I think a big part is my FM and the doctor reiterated the obvious stating that physical stress and mental stress is the worst thing for my body…and my sugars, leaving us to wonder if my diabetes is out of control because of my FM or if my FM is so bad because of my diabetes….regardless of the reason, I just want it to get better before my eye sight becomes affected.

 

Later we did some grocery shopping. The kids were great company and for the most part did fairly well. Minus one little shove from Asher after this cute picture that landed Leah in a pile of canned goods…
  

Tim was also busy this week unloading his second trailer of hay bales…

  

And Asher and daddy are figuring out if those hay bales are actually going to fit in the barn…

  

Health wise, as for my FM, I continue to struggle with the fatigue, heart palpitations, memory issues and chest/head pain. My hands are also starting to swell and turn white…so just another day…

I have also been experiencing some new and more frequent symptoms for the last couple of months. Shocker right? It is unclear as to if it’s related to my FM but the intense pain is more than I can bear at times. And again, due to the fact that I do have a very rare disease, no local doctors want to attempt to help me with these new and possibly common symptoms, meaning yet another referral to Iowa City. Yeyyy…that’s sarcasm by the way!

Tim has been nice enough to tell me how “deathly” I look just about every night, including my pale skin yet my extremely flush cheeks, or circles around my eyes so dark it almost looks like I was punched. After all these years the sweet nothings continue to be whispered in my ear 😉 Regardless, I couldn’t resist sharing this picture with our little blessing!

  

And then there’s Skyler and Nathan catching up on some sleep after a hard morning of chores…

  

We also attended a Fourth of July parade and as Leah would say…”the best parade ever!” 
  
Our little Asher…

And his contagious smile…Now that is some serious bed head!! 

Then there’s miss Leah getting ready for princess dance camp all week….
  

As we were waiting to go in I asked Leah if she liked the camp and she replies “mom, it’s amazing!”  
  

It has been a busy month and the summer is flying by! While I enjoyed my month of June, almost appointment free, focusing on the kids and my job, I am anxious to get back to Iowa City next week for a follow up on my lung which will include a morning of tests and then a visit with the doctor. 

Tim and I continue to push on. It almost feels like we are back at square one though because I have so many symptoms, and no answers. But we do have faith that this too shall pass because we can look back to see how much God has already brought us through. 

And, as far as my book, I sent my official and completed manuscript in yesterday and it is on to production!! I felt extremely sick and I guess this could be the reasoning as to why my complexion takes on a ghostly tone! 

So that’s it for now. I will keep you posted on my appointment next week and again, thank you all for your encouraging words and prayers!!

I was finally able to meet Cody who is in his early 20’s, his stepsister and his mom the other day. Cody is also battling Fibrosing Mediastinitis and his mother Sharon has been a very strong advocate for him, for all of us with this ugly disease. 

I have also met Martin, another FM fighter and it’s always emotional for me. Less than 600 people diagnosed and I have been able to meet two now in person. And to be able to talk to someone face to face with so many similarities in our stories… We have almost died due to the lack of knowledge doctors have, trying to treat us in ways that we would later find out could have done more harm than good, or even killed us! The frustration can be consuming. People, doctors not understanding just how much pain we endure, how much effort it really takes to make it through the day sometimes…all while looking “normal” on the outside.

As we were getting to know each other, I was sharing stories about my job, our farm, our kids, and Cody asks “how do you do it?” My heart instantly ached for him being so young, having even more struggles than I have to deal with. 

I honestly believe it is only by God and His strength that I am able to fight on…the kids also keep me on my toes and Tim pushes me. When Tim learned of my disease I know he had no clue as to the effects it truly has so in the beginning he tried pushing me too hard. “If you think you’re sick you will be”, one of his biggest motivators for me to get up and moving…didn’t happen because the more I pushed the worse I became. Plus I felt like my husband thought I was a lazy whimp…nobody understands that fatique, that awful chest and head pain, the effort just to take a breath because if you breathe too deep that horrid stabbing pain shoots through the chest to the back of the shoulder blades….especially when we look healthy on the outside.

But then Tim came to an appointment with me…and everything changed. Tim, now sitting next to me rubbing my hand, trying to comfort me at that appointment while he heard the doctor tell me, it has progressed, there is no cure and they will do the best they can to make me “comfortable.” Tim got angry, bitter and ignored it….telling me once again if I don’t think I’m sick I won’t be…I know he only told me that in hopes of convincing himself.  Tim now knows me well enough to know when I really do need that push to get moving because I’m losing focus…and he also knows when to encourage me to rest. He has been amazing…for the most part 😉 But, the thing I love most is his sense of humor and I know God blessed me with this man to make me laugh on the darkest days, to help keep joy in my life and to help hold me accountable for my personal relationship with Jesus!

So, I guess that is how I do it. Purely by God’s grace, a lot of praying and a lot of laughter. 

Now I am in the process of helping Sharon get our event figured out for the next rare disease day to bring awareness to FM. We are figuring out how to get grants to help with some of the costs and we are lining up our personal doctors to be guest speakers, not to mention advertisement, poster boards, shirts and pamphlets. With only two of us it seems overwhelming and actually this is all new to me so I haven’t done much…so if anyone is interested in helping or has any other suggestions on how to make this event a success please contact me with a personal message through Facebook or Twitter!! 

Cody is an amazing young man full of courage and humor and kindness. Cody and I were talking and while we know the chances of any medical intervention “curing” us most likely will not happen for us, we continue fighting for the next person who is diagnosed with FM! We hope that doctors will continue to learn from us so that they can provide answers, treatment, cures and hope for their next patients diagnosed with Fibrosing Mediastinitis!! I really believe there is a cure just around the corner so please help us bring awareness!!