Today we switched things up a bit and went to a local church here in town. There were a lot of people that welcomed us and the pastor also came over to introduce himself and welcome us as well. Leah and Asher did absolutely amazing for sitting in the service with us the entire time! Well, about five minutes before it was over, Asher got the giggles and thought it would be funny to kick off his shoes…over and over again, so I took him out for the remainder of the service. Very nice church and very friendly people!

We then came home, grabbed a quick lunch and headed to the Falls in Cedar Falls. Kids were so excited to go…

And me, well I was excited to FINALLY use my 31 tote I got specifically for the pool! I asked Skyler to take a picture of my bag and she of course had to take it as a selfie showing how excited she was too (smartie pants)…but look!!! Flip flops on the tote!!! Simple pleasures 😊

Everyone had a great time!   

It’s always snack time for Asher!   

 Skye gets her love for photography from grandpa Steve…although he never took selfies  😉   

   
And you can’t have a day at the pool without stopping for ice cream…  

Which then led to bath time, supper time and bedtime!! 

People often read my blog and shake their head while asking me, “how do you do it?” Well…God blesses me with days like this 😉

Funny how I signed up for a 5k then shortly after, I was bombarded with medical appointments. Well today was my day to get back on track with exercise and the kids sure did keep me motivated! Skyler and Nathan put on their rollerblades while Leah rode her bike and I pushed Asher in his stroller down the bike trail.   

Of course we couldn’t go without taking a selfie, and yes, that’s me lagging behind!  

Then Leah had to stop and freshen up her lipstick…   

This is the mile marker right after the tunnel, but that hill!! How do I forget about it every time?! And here’s my confession of being a bad mom…instead of telling the kids to walk down in the grass…I simply did not watch them go down!!

Everyone survived the two mile stretch, and even with smiles on their faces…

Right when we got home and drove up the driveway Skyler noticed some of our bigger cows were out of their fenced area. And with Tim being gone, it was up to me and Skyler to round up four, 700 pound cows back into their original spot. I have to admit, I was quite impressed that we were able to remain calm and pull it off…because those things are big when you are up close and personal with them!! Thankfully they were still in a fenced area or yes, I might have panicked!

Later on in the day my brother Ryan stopped by with Caden and Keira. Kids disappeared within minutes and Ryan and I were able to have a nice visit…and some laughs! It’s always great seeing them and the kids sure do have fun when they get the chance to play together! 

Tim was gone all day due to work and power washing so he didn’t get home until after chores tonight, making his day not as eventful as ours. Tomorrow is Sunday and while he can’t completely be off from work, Tim does try to keep Sundays restricted to only chores so that he can spend most of the day with family and tomorrow we are looking forward to doing a little something fun with the kids after church! 

Enjoy the rest of your weekend!

According to my own interpretation after reading my results online😊, I am happy to say the MRI results look to have come back negative for fluid on my brain and brain disease! Haha, those are apparently the specific things they checked for. I do still need to wait for the call from my neurologist but with that being said, I am not going to proceed with the spinal tap, even if my sleep study shows nothing. 

Again, not that I’m giving up but my lung doctor had just confirmed that a lot of these tests aren’t going to show just how severe my symptoms are. That’s the bad part about FM. While I am glad the doctors are ruling out all of the other possibilities, I do think I have been through enough testing in the last couple of weeks to be content with the fact that all of my symptoms are indeed due to my disease…which I assumed.

Of course I would like something to verify why my head is so foggy and yes answers would be nice to justify these other symptoms but like I said before, it’s a matter of just accepting what it is and knowing that I am going to have bad days…or weeks, but they will pass…eventually…or I simply learn to live with the symptoms 😊 At least we now know there are no other serious health issues going on with me.

So let’s get the eye surgery and sleep study out of the way and then I can just continue with my natural remedies and try to cure myself! 😉

And for the next couple of days, it’s time to focus on my husband and all of his hard work that he does to keep us moving forward. Monday is our special day at the Iowa State Fair and we are looking so forward to it. Again, we are just so honored that our friends thought of us to nominate for the Way We Live award. I know Tim is doubting himself big time on being deserving of this award but he has worked so extremely hard to get us where we are today…all while being with me at every procedure and almost every medical appointment…and that’s been a lot especially over the past few years!

And of course we know that God has played every part in this because with all of the recent discouraging news about my health, my eyes and all of the crazy tests that seem to be never ending…well thank You God for giving us some exciting news, a little break from the rain! All in His time! 

To be getting away and actually going somewhere other than the hospital…an actual family day together after such a long and uneventful summer is going to be great!!! God has truly blessed us more than we deserve!

And thanks again Dave and Angie!! ☺️ You guys are awesome and Monday is going to be a good day!!!

Tomorrow I am off to Iowa City for an MRI of my brain. It has been a trying week so I opted to do this trip alone! I’m hoping that I can maybe hit a few little shops afterwards and try to make the most of it, but we will just have to wait and see. I thought the MRA of my leg was bad but at least I got to wear headphones for that! I doubt I can wear headphones for a brain scan?? And I’m really not looking forward to my head being inside the machine this time…and for almost an entire hour!! So once again I am asking for prayers that I don’t freak out once the procedure starts! 😳😁

My sleep study was also rescheduled for a night next week and I am hopeful that they will be able to get what they need this time around! 

As far as my eye surgery, I still don’t want to do it and have been coming up with excuses as to how to get out of it. We do still need to call and visit with the doctor to get clarification on a few things before I have the surgery on Tuesday.

So, not much new to report and unfortunately it looks to be another long week ahead.

On a more positive note…I received my draft of my book and have already went through and made a few minor changes. Once we get these last few changes made, I do believe that my book will be on the market!!! Here is a one page preview…📖 Ahhhh!!! 

I get to the sleep study last night and we quickly review my symptoms as to why I am there. I usually go to bed around 10pm and the nurse said it takes about 30 minutes to get hooked up so at 9:20pm she comes in and starts the process.

I’ve got wires everywhere!! On my legs to test for restless leg syndrome, belts around my chest and stomach to determine my breathing pattern or something, wires on my face, in my hair, on my chest, a wire taped to my throat, a tube taped in my nose to monitor my breathing and then I also have the oxygen clip taped to my finger. Yeah, let’s see how well I sleep!

But then there was a problem and something wasn’t registering. Now two nurses are working on me and they are swapping wires, reapplying things to my head, but nothing. They switched out cords, restarted the computer, nothing. They made phone calls to get other suggestions and switched me to a different room, still nothing.

They were very apologetic and it was apparent how frustrated they were that this was happening and continued to apologize as they constantly had been scraping my head to find new areas to reapply the electro pads.

One nurse stated she has been doing this for 12 years and has never had this big of an issue. So, I asked if it could be my head. Haha! She kind of laughed and says “at this point it makes you wonder.” We began talking about my disease and the symptoms as to what led me to come in for a sleep study. The nurse was very interested (as usual) and goes on to say they can’t get, basically a reading on my head. She said the number they need is usually around 5 but mine was in the 60s. She said some people have higher numbers but they can usually still get the signal so to speak. She explained that with me everything else is good to go…my legs, my face and my chest, but my head…just isn’t cooperating. Go figure!

  
I felt like a walking bomb!

Sooo, after almost three hours of trying….no success and all those wires and all that tape was taken off only for me to be sent home at 12:15am!!! 

The nurses had also called their boss during this whole ordeal but the suggestions he had made didn’t work either so he is supposed to be talking to my doctor to see what needs to be done, and if and when I will come in to try the sleep study again. I’m sure it was just bad equipment or something not right, a fluke, but this stuff sure does happen to me…a lot!!

On another note, Leah gets up this morning and asks if the doctor let me come home and I said yes. She sits there a minute with her “thinking” look then says “did you stay at the hospital or jail”? Wait, what?! Where on earth did she get jail?!! I must have misheard her! I made her repeat the question to make sure I heard her right and yep, I will definitely be talking to Tim when he gets home from chores!!

As far as timing and appointments running back to back from 11:30am to 2:00pm, it couldn’t have gone any smoother! I was able to get in and out with each appointment so that I made it to the next one on time. 

I started with dermatology and while my hands and arms looked awful from the rash I tend to get on occasion, I was proud to tell him my fingernails looked better. After reviewing pictures from the last time I was there in March though…the doctor said my nails really weren’t any better. Darn! Again, they were fascinated by my skin and decided to scrape some spots and run it under the microscope, but nothing was found. Still intrigued, they decided to do a punch biopsy to see if that would help them be able to determine the reason why my skin and fingers get so bad.

 The doctor said he was hopeful that the biopsy would bring answers but if nothing showed up then he really would not be able to tell me what was causing this. 

As far as my other appointments, well, it’s been due to female problems and once again they could not determine the direct cause. Some of my symptoms could be due to the medications I take for my stents, and as noted in my chart, nobody had ever seen anything like this. And again, because of my FM, they chose to make surgery the last resort, however, because of my diabetes, some of the medications I could not take, so I was really left with one option to try. I am hopeful that in a couple of months most of my symptoms will have gotten better and this treatment works otherwise the doctor did say we will have to eventually look at doing surgery.

After talking with Tim, I have decided that the sleep study and MRI that I have coming up this week will be it for tests. If the results come back normal I am going to be done with seeking answers and accept what it is. I have a chronic and rare disease so symptoms are going to flare up without reason. 

I have also decided that I am going to have Tim talk to my eye doctor because when I did my first eye surgery Tim remembers the doctor saying he would never do more than two on each eye, yet I am scheduled for my fourth surgery on my left eye. Hopefully Tim can get some clarification as to what exactly we are aiming for and if this is a surgery that is just to be expected in order to prevent any vision loss, or if another alternative is available. 

While I have prayed so hard to have just one appointment where I can walk in, the doctor can give me a straight answer as to what is wrong with me, and actually do something to ease my pain and symptoms, I do realize that will probably never be the case because of my disease.  I do know I am complicated and they need to make sure and check things from every angle 😉 But that’s ok because I know God has a purpose for all of this and will continue to lead me down the right path. 

I am extremely grateful for how much the doctors have helped me and especially so thankful that the doctors today are listening and trying to find answers. But with this disease, sometimes answers simply can’t be found. 

With that being said, I will continue to drink my “special” water and my lemon oil because the energy it has given me is amazing, and who knows, maybe that will end up being the answer I’ve been searching for all these years! 😏

Thanks mom for helping with the kids and for a delicious dinner! Have a great weekend everyone!

Today was another day of unexpected answers.  Instead of the shots I was dreading, I am going to need surgery again in order to once again hopefully fix the damage and prevent any permanent vision loss. After reviewing my chart, the doctor was reminded that I have already had three eye surgeries on my left eye and one surgery on my right eye so he did agree that instead of doing both eyes again, that we would start with the left eye which is definitely the worst, and then we will monitor the right one. To be honest, I’m not sure what to do. Do I get another opinion because how many of these surgeries can I really do?! My doctor is great but this will be my fifth eye surgery in a year and a half.

Needless to say, between the crazy suggestions yesterday of fluid on my brain and a possible spinal tap, then waiting to schedule an MRI for my brain and now waiting to set up eye surgery…well, it takes a toll pretty fast…and not just on me but also on Tim and our family. I mean, this seems to be turning in to a joke doesn’t it?! How can I have so many things wrong with so many parts of my body?! What is happening to me??

I also received a call this morning that I am now going to be able to get in for my sleep study this upcoming Monday night so that is great that I won’t have to wait until September, but again, with all this new testing and surgery coming up, the next couple of weeks look to be rough…and mind you I still need to make it through three more appointments this Friday in Iowa City.

With that being said, I did have a different blog started but then my mother sent me an email in regard to the last couple of days that seem to be spiraling downward for me. While I have been listening to my songs for encouragement and praying…it’s still hard.  Mom had sent me a quick text saying “check email sometime, I had a moment! And yes I am fine. lol.” So, I am going to share the email because I don’t think I could have written my blog any better!  I will admit, it has been a couple of rough days for me and Tim so thank you mom, for reminding me of everything God truly has blessed us with. Love you…and nice writing by the way!!! 😉

Today is one of those days I just wanna crawl in bed and pull the covers over my head. By morning I will be fine and probably will be ok within the next few hours. And if Becky chooses to share this I will be perfectly fine by the time you read this. But for now I am “upset” and wondering what Gods plan is. And the word upset? Those who know me know what I really mean. Beck has to have yet another surgery on her eyes. It is something that is treatable. But once again it’s something else to deal with. She is so brave. I know she has her moments but she always bounces back! I don’t know if I would!

Tim is so supportive but it has to wear him down too. They wed almost seven years ago and I know they both take those vows seriously. I just want to ask God “where is the richer, where is the better, where is the health?” Like I said I will be better soon. You moms out there know where I’m coming from. When our kids hurt, we hurt! I just wanna yell “God, give ’em a break!”

But I know God has already done more than we ever thought possible or deserve. I am so thankful  for the doctors who have listened to us. I am thankful for medical technology that Becky has benefitted from. I am thankful for Him bringing a godly man into her life and the blessing of two beautiful babies born when Mayo said she should be dying. I am thankful for Becky’s sense of humor, her wit and even her sarcasm! The girl can be a handful and Tim’s gotta be on his toes with her! They are truly two of a kind!

Most of all I am thankful for God’s grace. Where would we be without it?!

Well, see? I think I am better already. Please keep Becky and her  entire family in your prayers! We need them desperately!

So I met with neurology today and in the beginning I wasn’t sure how it would go. When they checked me in of course they had to do my blood pressure. The nurse was going to do my right arm so I told him the pressure is always higher in that arm but I don’t think he heard me or thought I was joking because he continued to wrap the cuff around my right arm. Once he saw the result was high he simply said “you must be excited to see us.” I just smiled and looked at Tim. 

Once back to the room, the med student began his series of questions asking about my symptoms, how long I’ve had the symptoms, if I feel it’s getting worse, etc. He then pulled out a sheet of paper with even more questions, except this…was an evaluation…for dementia. I was asked to remember certain words, to draw what he drew, to write a sentence, he asked what date it was, where I was and then asked what county I was in. I looked at him and said I did not know but that I lived in Bremer County. He looked at Tim to confirm this then said he would give me the points. Ha, well thank you! He also asked me what was on his wrist and what it was used for aka…watch. Whewww, glad I got that one right! But really, what am I doing here?!

Tim was then asked a few questions about my symptoms and one of his responses was something to the fact that he had told me he figured the doctors would just confirm that I was goofy! Seriously?!  I mean I can see him telling my regular doctor this, but a new one?! Oh, and the guy did not laugh!!

After about 40 minutes of this, he finally left the room then returned with the doctor. As the doctor was reading through my chart he looks up at me and says “when you were diagnosed with Fibrosing Mediastinitis you were automatically put in to the weird category.” Everytime he said my disease he would look at my shirt as if to help him remember!! Haha! He admitted that with this disease, it’s very hard to figure out what is going on. I had informed him that I was scheduled for a sleep study in September, which he thought was a good idea, however, due to that being so far away he decided that he would also like to have an MRI of my brain done as soon as possible. Then, the twist comes.

He went on to say that it could be a number of issues from here to here (putting one hand at each end of the table on opposite sides) and anything in between. Again, he said with my FM, it is very hard to diagnose the real problem. 

IFFFF the MRI or sleep study does not show anything then he would encourage me to have a spinal tap done to make sure I do not have a build up of spinal fluid somewhere that would cause my symptoms due to the fluid not being able to drain adequately because of my SVC syndrome. Whoa, what?! I asked him if he did a spinal tap if that would for sure give me answers and he said no but it would at least rule out this possibility which is a very serious issue.

So, that is that and something I really wasn’t expecting, and something I probably won’t do…and I’m going to definitely give this one to God and not worry about it. Will just have to pray that answers are discovered on the MRI or with the sleep study.  

On another note though, I took Skyler to go get her school permit so no appointments that I have this week will be as hard on me as that was!! 😉😂 

Tomorrow is the big eye appointment so…to be continued!

The week is finally here. It is going to be filled with five appointments, four of which are in Iowa City but thankfully I was able to manage to get all but one scheduled on the same day there! In the eight years I’ve been going, that is as rare as my disease!

Tomorrow afternoon I go to neurology for my brain. I am hoping to find answers as to why my head is so messed up…so to speak. I continue to have that foggy hangover feeling every morning, forcing me to take the first few minutes of my day trying to figure out what I did last night, what day it is and what I am supposed to be doing. I also have the head pressure that is unremarkable. Not to mention the extreme forgetfullness I experience every day throughtout the entire day! Tim has even acknowledged that I am bad and seem to slowly be getting worse.

While filling out the questionnaire online, which is a joke because I experience every symptom listed on there…but remember, that’s ok because I have FM 🙂 Anyway, I noticed the doctor I  am seeing tomorrow specializes in dementia! So, while I am praying for answers tomorrow, I am praying all this extreme head fog and confusion and forgetfullness will indeed just be due to me being so busy, too much going on in our lives…and nothing more.

Tuesday will come the dreaded eye appointment, finding out if my eye has gotten worse and if so, possibly resulting in immediate intervention…shots in my eye. I don’t actually know what I will do, if I would actually get the injection right then and there, or if I would leave to go searching for a second opinion. But, wouldn’t that be a joke because of my disease and how long would that take to get lined up? Would more damage happen to my eye in the meantime? I’m in for a lot of praying over the next couple of days!

Regardless of what I find out Monday or Tuesday, the following couple of days will be focused on family. Leah will be getting registered Thursday night for the next year of dance and she sure is excited! Skyler will be going to volleyball camp this week and we will finally be working our way back in to the school routine including Leah starting kindergarten and Nathan starting football…more craziness…but so much to be thankful for!

Then on Friday I am back to Iowa City for a dermatology check up on my fingers and hands, which haven’t shown much improvement, and then I will go to my new referral for the new issues I have been experiencing over the last three months. I also have some scheduled tests set up for that day as well in regard to the new referral and I am really praying they will find answers to help me!

On a positive note, while I still experience my symptoms of chest/head pressure, shortness of breath, forgetfullness, etc…I have had energy!!! Since Wednesday I have been a cleaning fool! And not just cleaning but actually sorting through and organizing! I have even been cooking dinner every night and playing with the kids!  I did cartwheels and handstands with Leah and boy was the look on her face priceless!! And so was Tim’s, haha! I absolutely love it because I am staying up past the kids’ bedtime, spending quality time with them during the day and being productive throughout the day as well!! I am excited about cleaning simply because I have the energy to do it!

And yes that probably sounds crazy but when sickness overtakes me, I truly do appreciate the times I am well enough to enjoy the simplest things with my kids or accomplish even the smallest tasks! Whatever this new energy is from, I am going to make sure and continue with my routine!

This is going to be a long and emotional week for me because regardless of what happens, it scares me that I am…well, I am not old enough to be going to a doctor in regard to dementia, but then I guess I’m not old enough to have eight stents or to be going to a heart doctor or a lung doctor… Anyway, yes that’s just his specialty but sometimes I just get frustrated with the positions and testing that I find myself in.  Please say a prayer for me that I do not lose focus of how good God is no matter what the outcome might me.  Also please pray for my family as they continue to walk with me on this journey as well. I came across this song the other day in my play list and think it will need to be close to me this week…

After being up early and working most of the morning, I decided to take a break and walk. I figure with the 5k coming up, I better see just how much “training” I will need to do! Leah was with Tim at chores so I loaded up Asher, along with my lemon water and we hit the bike trail. It was a beautiful day but after we started walking, I was extremely thankful for the cool breeze!

I’ve always been a fast walker so I was able to push Asher in his stroller at a fairly decent pace. I have an app on my phone to record my distance and speed so I pulled it out to see how I was doing. I was at .8 miles and just under 11 minutes so I decided I would run the last .2 miles to get under 11 and sure enough I was able to get a 10.55 pace! Yes…but noo!! I have to walk that mile back now! Asher sure did love it when I was running but sorry kiddo, that’s as much as I run for just starting back up again!

I put my phone away so I could focus on my walking, and on my breathing at this point, to just finish out my route…which we did! I now have my baseline. I finished with 1.8 miles around a 12 minute pace. Ouch, but now I have something to improve on over the next two months before the 5k walk. 

While I will admit I felt like I was going to be sick afterwards, along with the chest and head pressure, it felt great to get some real exercise in…just don’t mind my red face!☺️

I mean, we’re always on the run and I’m constantly chasing kids around or going up and down the stairs non stop throughout the day, our life is hectic but it felt good to be doing something consistent…and to be feeling that burn from my own intentional doing! 

After this weekend of really thinking about my situation, I figure I’m going to have my symptoms no matter what I’m doing whether I’m at home or out and about so I just as well be doing something that gives me a chance at feeling healthier! Don’t get me wrong though, as much as I hate to admit it, this little walk was tough for me to do and I will probably still need my naps during the day, but I did it! It’s a start and I will take what I can get 😉

We came back home and I was able to put the rest of my work hours in for the day. Once Tim arrived home, I finally agreed to try something he’s been pushing me to do…but when you have to wear gloves to avoid burning your skin?! Skyler said she felt like we were scientists!

Well, Tim says he did a year’s trial with hydrogen peroxide on his cows and they have never been healthier…so I’ll be good to go right? With a very minimal dose…right?!

Awww, how sweet for him to join me…kind of like Romeo and Juliet perhaps???   

I would also like to share that I got a call from the Waverly Hospital and I will be able to set up a table on February 29th for rare disease day!! While I hate not being able to attend that day in Iowa City, I do feel this is a great opportunity for me to bring awareness locally! And if Sharon covers Iowa City with me covering Waverly, maybe we will have a better chance of peeking interest in some local doctors who want to get involved with our care as well! It’s worth the shot anyway!