Happy Anniversary

So I have been out of the blogging mode for awhile even though I do continue to write…I just haven’t shared much. So, I thought why not get a little sentimental and wish my husband a late anniversary. 

Last week Tim and I celebrated eight years of marriage. Grandma and grandpa took the kids for the night so we ordered in dinner and watched Alaska the Last Frontier. Exciting right? Ha! But, he ended up working late then I had to be in Iowa City the following morning so our options were limited. But really, I love that show so it was not a night wasted! Haha! We had a nice night celebrating regardless because we were together…something we have learned to never take for granted. 

Because, if I’m honest…I must say that the last year was by far the most difficult for us individually, which has also made it challenging for us as a couple.

I was down most of the year due to my severe back issues that resulted in two back surgeries within three weeks apart. Several months of horrible pain, which eventually led to me not being able to walk…literally crawling if I needed to move. Excrutiating physical pain like I had never experienced before!! Can you imagine how fun I was?? Not to mention, on top of my bad attitude, Tim had his hectic job to do while juggling almost everything at home for me and the kids!

Once the back was manageable…I had to play catch up with all of my fm, eye and diabetic appointments…which has only led to more procedures and more doctor appointments. It has been a very long and hard year for me physically. But I would go through it all over again in a heartbeat if things could have ended up differently for Tim…

Because my physical pain cannot even begin to compare to the emotional pain my husband has had to endure from losing his older brother Aaron to cancer at the age of 39, back in November. And while I can’t write this without crying, I cannot even begin to comprehend what Tim is feeling. Watching the man I love most, struggling every day with anger, bitterness, sadness, trying to figure out how to go on with life…when such a huge piece of his life is missing…his big brother.

The strain on our marriage has been tremendous from one extremely gut wrenching circumstance to the other. 

Eight years ago, this was not what our life was going to be like. Tim and I were all smiles, so madly in love with each other…

Aaron giving Tim some words of wisdom and Tim giving me a creepy wink…haha!

Our nights were filled with me laying my head on his chest discussing our dreams and our hopes…thinking about the new life we were starting together. We were going to have several more kids on top of Skyler and Nathan, talking about our careers, trips we were going to take, where we were going to build a house and the list went on. 

We always took the kids to church together when we were dating and we were going to continue to do that as a family. But, as I was reflecting this last year, it made me realize how much our dreams have changed and how different we want things to look in our lives going forward. 

Health issues prevented us from having as many children as we were planning to have…but we were blessed with four amazing kids! 

And all the other stuff I dreamed about…it was just stuff. I never dreamed about joining a small group, getting more involved with church and like I said, we wanted to make sure we took the kids to church…but my ten year life plan did not include me reading the bible more and actually growing in my faith, having a more personal relationship with Jesus…but it should have. 

Eight years ago I fell in love with an idea of Tim and what being married to him was going to be like. Our idea of marriage was so completely different and we couldn’t have prepared ourselves, even if we tried, for what the few short years being together were going to throw at us. Deteriorating health, loss of jobs, kids and sickness, financial stress, more bad health, the deaths of grandmas and grandpas and hardest yet…a brother…all of this in our first eight years.

And now, instead of laying on Tim’s chest dreaming about the little cabin we were going to put up in Minnesota, we often sit next to each other in silence, trying to absorb the day’s events, reviewing what appointment is coming next or we cuddle up to watch a movie because we are simply exhausted and just don’t want to think about anything…these are on the few nights I feel good enough to stay up after the kids go to bed.

So how does a marriage survive one slam after the other? I mean, every time I go to Iowa City…I know they won’t be telling me all of the tumors throughout my chest are gone and I don’t have to go back. I will always have procedures and tests.

And Tim will still face things every day that will be a constant reminder that Aaron is no longer here…

It it by the grace of God that Tim and I are still married. And, while we love each other so much, we have both had to learn how to ask each other for forgiveness as well as accept it and then start over again…one day at a time.

Throughout all the hardships, the pain, the suffering and the sorrow…we have also been showered with blessings and we still find something to laugh about…no matter how dark our season is. And I always say it but I love how my husband can still make me laugh, even through all the pain. I am able to see a little more how God is shaping my husband in to the man that he is today…a hard working man…

an amazing father…

a husband filled with love, support and encouragement…

…dedication, commitment…

…a lot of goofiness and fun…

…adventure……psst…I caught the fish by the way…😜…charm…and soooo good lookinπŸ˜‰πŸ’žπŸ’ž
…and that smile!πŸ’ž

Each circumstance is an opportunity for us to grow….and each situation has its own pace to work through but we still push forward…together. 

And don’t get me wrong, we still dream, we still have our bucket list and we talk about how amazing the next family trip to wherever would be as well as our dreams for our kids but we are also finding joy in everyday life…good or bad days, we try to smile regardless.

While we would love to get away on a crazy fantasy family vacation, we cherish just being with the kids. We appreciate each day given to us and we don’t take time for granted. But ultimately, having Jesus in our own lives and praying our kids have a relationship with Him as well are the things we focus on. Take nothing for granted because it can all drastically change in the blink of an eye.

So yeah, this might be on the sad side to most of you but to me…this is our life and it is absolutely beautiful.

I love everything about you Timothy Lalk. God knew exactly what I needed and He has made you so amazingly better than what my idea of a great husband could ever be…happy anniversary.

And yes hon…this is our wedding song! We went for some non traditional music!πŸ˜‰

Open for business!

Now that I am up and walking and my back seems to be healing, it’s time to get back on track with my fm!

I had my pulmonary artery stents checked in December and then I had to recover from that procedure before I went back for my SVC stents, which a few of them had appeared to be closed on the scans I had done back in December. 

So that makes it almost two years that my stents stayed open and considering all the other health junk I’ve been dealing with…that’s pretty good!

Tim and I left for my appointment in Iowa City a little earlier than usual due to the six inches of snow that had fallen and was still coming down! Thankfully the weather didn’t get us too far behind so my husband was still able to stop at our usual spot for breakfast. And I just tried not to breathe in or look at all that deliciousness…and yes, I was fasting so I’m talking about the biscuit, not my husband! 😜

 Once we arrived at the hospital I was greeted by some of my usual nurses…and some new ones. As they got me hooked up with an IV and antibiotics, we played catch up reviewing my most recent symptoms as well as how old our kids were and what we had been up to.

The nurses then rolled me back to the operating room and same ole thing…I was moved to a long thin table, heart monitor and a blood pressure cuff was put on me, cold dye to the arm and then the plastic tarp set up like a tent over my face. And yeah, I say I’m not claustrophobic but when a plastic sheet goes over my head…my anxiety tends to kick in a little bit.

And due to my oxygen levels not being the best, especially under anesthesia, I am now required to wear oxygen with every procedure. 

Doctors started with my right arm in which they made a tiny incision for the camera and catheter to slide through my arm and in to my chest…one of the most bizarre feelings I will ever experience. Some times giggling from the tickling sensation when it gets to my underarm…then tearing up from the pressure and pain when they get to the blockage. This time I really felt a lot of heart palpitations as well. They then performed angioplasty with a balloon to open up the stents and instant pressure was released from my chest. 

Since my scan had shown minimal narrowing on the left side, doctors decided that while I was there they would go in to my left arm as well and I think to everyone’s surprise, they discovered that the remainder of my stents on the left side were completely closed! Thankfully they were able to balloon the stents open and then I was done! 

I was rolled back to recovery where I was supposed to stay a few hours to make sure I handled the procedure okay but since I know everyone and this is “just another day” for me, I was able to leave after an hour! So, I got dressed and Tim drove me home. And this time, I was able to get all the way home before getting sick from the anesthesia!

The doctor did say if anymore symptoms come up to call them immediately and stressed several times throughout our coversation how important it is to call even if in doubt because it’s better to check and do nothing, instead of waiting too long and then not being able to open the stents back up again. He also explained that even though he opened all six of my SVC stents, they will close again but we just don’t know how soon. Again stressing the importance of calling if I develope symptoms.

I have been pretty sleepy from the meds and uncomfortable from all the messing around in my chest. Even though I have done this procedure countless times, I always forget that I tend to be a little more sore than anticipated. 

I also had a little problem with one of my incision sites bleeding but thankfully I was able to get it slowed down so I’ve definitely been taking it as easy as I can. I always look pretty beat up when I return home…

Right arm…Left arm uncovered and it always amazes me at how much doctors can do through such a tiny incision…and how much a tiny incision can sting!!Other than that though, the doctor orders are fairly simple. Continue to take it easy for a few days and call if I have any symptoms otherwise I don’t have to follow up for six months!! 

The procedure went as smooth as it could have and I am extremely grateful for that. I am also thankful that doctors are still able to intervene and provide some sort of treatment to me! 

Like I’ve said in the past, appointments are always constant reminders that I have this illness with no cure but this procedure hit me a little harder…simply for the fact that back in December when my scans were done…my left stents had looked fine. The doctor had mentioned they looked a little narrow but nothing as concerning as the right stents had looked. 

And then only a month later my left stents had completely closed on top of my right stents being over 70% narrowed! I did have new symptoms of my arms and fingers going numb and I was feeling pretty lousy though so I knew at least some stents were closed…it just discourages me when things happen so fast.

These pictures resemble what I have had to deal with since getting my first set of stents back in 2007…yet all this is for just one problem of so many that has been caused by the fm. Sometimes I do these procedures every three months, sometimes the stents stay open for a couple of years before intervention is needed. We just never know. I am in Iowa City almost monthly for scans, labs, procedures to ensure that we catch any progression early enough in order to “fix” me…temporarily. Is it frustrating? Yes! Is it painful? Most definitely! Is it worth it? Absolutely…at least I choose to believe so! 

So now that all six of my SVC stents and two pulmonary artery stents are open, I’m ready to see just how much they can handle…within my limits of course!πŸ˜‰ 

Thank you again for all of your prayers and being such an encouragement to me and my family! 

Always bitter sweet

Made it the month without getting sick again so I was able to keep my scheduled procedure last week.

For as many times as I have been to Iowa City…there is always something just a little bit different about the same procedure or testing that I do every time. Which I know a lot of it has to do with different nurses or techs so I have always said as long as it doesn’t require anymore pokes or torture on my body…they can do things the way they feel it should be done.

After I got prepped and had the ivs in, the nurse asked me what type of music I like to listen to. I was a little confused by this because the only time I have ever been asked my preference in music is when I am having an MRI done. I chose Christian contemporary and wondered why I would need to have headphones during an actual surgery? But whatever.

Once it was time to go back for my procedure Tim and I said our “see ya laters” and I was rolled away in my bed…until we went up a little slope and stopped…and then I proceeded to roll backwards a little bit. Apparently the battery on my bed had died and since it died going up a little hill, I had instantly started to roll back. Nurses were behind me to catch me so it wasn’t a big deal but everyone got a kick out of it…and definitely the first time in all these years that has happened. 

When they got me back to the surgical room, I was moved to the cold table and then covered up with warm blankets. This is when my anxiety really kicks in as doctors, nurses, wires and machines and tubing are surrounding me…and then the tarp was placed over the part of my body where they were going to be working on. The ice cold dye was applied to both of my legs in case the doctor needed to access both sides of the groin. Two years since I have had to do this but it seemed like just yesterday…

And then I heard the music come on over the speakers! So no headphones would be needed but I had picked what music to listen to during my procedure…that all of the nurses and doctors would be listening to!

After the music had been playing for a few minutes I heard one person say “did she pick this?” and when another tech replied that I had he simply said “oh” making me think he didn’t like my preference. But within a few minutes he was singing to the song so I knew I was good to go! Haha!

Shortly after doctors began the procedure, due to my health concerns with my blood pressure dropping during surgeries, I ended up needing oxygen for the remainder of the time that I was back there. Doctors checked my stents and while yes the stents were narrowing, they decided not to intervene at this time so I was taken back to the recovery room to lay flat for an hour before going home!

The doctor had explained to us that the right upper part of my pulmonary vein was completely gone…meaning the lack of blood flow had finally killed that area of the vein off and it was basically no longer there!! Isn’t it amazing how God created our bodies?! 

Then the doctor confirmed that my stents were more narrow but not much of a change from 2015, the last time they had went in to check them. He felt the narrowing was not significant enough at this time to risk trying to open them up any further. 

As far as my heart palpitations, he suggested we could do another holter monitor for 30 days but honestly, at this point, I’m tired of one thing after the other. I follow up with him in six months so if the palpitations are still going strong then I will consider wearing the monitor again. 

So, even though I was fairly confident that they would not intervene to open my stents, it is still bitter sweet. A reminder that nothing really can help improve my symptoms from a medical standpoint, especially when part of my vein is no longer there to fix. But I will continue to pray and I know so many of you are praying for me as well so regardless if God answers those prayers the way I think they should be answered…I know He’s right here with me working through all of this and that alone is bringing me comfort. 

With that being said, it’s time for me to be proactive again! I am starting back up on my treadmill and since my heartrate jumps up to almost 200 after only a few minutes, I have just been going slow and am trying to pace myself again. Now that my back is healing and I am gaining more strength, hopefully being able to do the treadmill again will help improve my lung and heart not to mention my back too! 

Just because doctors can’t fix me doesn’t mean that God can’t right?!πŸ’ž

My next procedure is scheduled in January as scans did indicate that a few of the stents in my SVC are blocked so until then I shouldn’t have too much to report! 

Have a Merry Christmas and enjoy this special holiday season with your loved ones! 

Well Shoot!

Okay, no more blogging from here on out until I get confirmation and clarification from the doctors first in regard to any test results! 😬

Apparently my scan DID show some more concerns. When contrast was injected in to my veins, the doctor did not see any of the contrast flow through my right SVC stents, an indicator that those stents are indeed closed. We reviewed my symptoms again but now we don’t know if those symptoms are a result of my pulmonary artery stents or my SVC stents being closed…but of course either way, any stents closing will cause problems…and the more stents that are closed…the more symptoms I will have.

The doctor reviewed with me that he would like to do a venogram with possible angioplasty where they put catheters in through the veins in my arms…a procedure I have done countless times unfortunately, in order to determine if in fact my SVC stents are closed. He also thought there was some narrowing of the SVC stents on my left side as well so his plan is to check all six SVC stents when they go in.

With that being said, the fact that no contrast went through the stents could mean that they are 100% blocked, so the longer we wait, the harder it might be to open them back up. HOWEVER, I have to go in for my pulmonary angiography next Thursday and regardless if the stents need to be opened or not, doctors will still be going through my groin to check things out, meaning some recovery time regardless.

My interventional radiologist is going to give me a few weeks to recover from my pulmonary procedure and then we will try to schedule my SVC procedure the first or second week in January as he did not want to wait much longer if they could help it. 

My instant reaction of course was frustration but once I took a deep breath…well, not really because my illness make it difficult for me to breathe!😜 But after some prayer I thanked God that I still have options available to me that could improve my health…and if not, there is still so much in my life to be thankful for.

Plus, it’s been almost two years since I have needed any intervention with any of my stents so maybe 5 out of 8 stents closed in two years isn’t too bad after all right?!

And as the doctor got up to leave the room he complimented me on my book! πŸ˜‰

Enjoy the rest of your week and until next time…

Follow up galore!

I know I’ve been pretty quiet on here but a lot of you have been asking how I have been doing so figured I would give a quick update.

As many of you know, I was scheduled to go in the Wednesday before Thanksgiving for a pulmonary angiogram/angioplasty procedure to possibly open up my pulmonary artery stents as my symptoms and test results indicate they are closing. However, I came down with a nasty cold and the procedure had to be postponed. Doctors did not want to risk working on my lungs and around my heart when I was congested and already struggling with my breathing. Makes sense even though I was ready to just get it over and done with! 

But, since I was not in the hospital, I had the opportunity to see my family and parents for our final get together over the long Thanskgiving weekend before my parents headed south for the winter! Skyler and some of the cousins catching up…

And due to my heart doctor wanting a pediatric cardiologist assisting with this surgery, scheduling the two doctors together at the same time is apparently very challenging so I’ve been waiting patiently to hear back from them. They finally got a date set for December 15th. This gives me less than two weeks to start…and finish all of my Christmas shopping before my procedure!! Yikes! Thankful for Amazon prime!!!😜

Unfortunately though I have a follow up scheduled over the next week on almost every one of my health issues so needless to say, things are about to get really crazy! 

Tomorrow I go to Iowa City for a follow up on my SVC. My interventional radiologist was able to look at my SVC stents from the scans I just did for my heart and lungs so thankfully I will not need to redo any testing. He did think that everything looked okay, however, with all of the symptoms I’ve been dealing with, he still wants to “look at me in person” to do a physical exam and make sure all is well from my SVC standpoint. Praying he is right and that I won’t need to be doing any back to back procedures on all of my stents!

Then next week I will also have a diabetic check up Tuesday, a ct scan and follow up of my back on Wednesday then my procedure for my pulmonary artery stents Thursday in Iowa City followed by another pulmonary appointment with pulmonary functioning tests in Iowa City on Friday…which I will have to reschedule due to already being in the hospital. Did you catch all that?! Have I mentioned that I have a really big calendar?! Haha!

Then that’s pretty much all I have for now!! 😜

I do not expect any complications from my appointment tomorrow dealing with my SVC so I won’t update unless anything “interesting” happens.  

As far as my procedure on December 15th, part of me believes that the pulmonary stents just aren’t working as well as we thought they would so my symptoms will just be a part of my daily life. I’m still thinking I could go in and doctors will decide not to risk messing with anything and if that’s the case then I could be home that same night! But, on the other hand…with the way I have been feeling, the other part of me is convinced that my stents are definitely closing and they will have to open them up which means an overnight hospital stay. 

Of course my hope is that it is indeed my stents closing, and as frustrating as that would be, at least there would be answers and a reason for my symptoms…and the potential to help me feel better.

Either way, only time will tell and God already has the outcome lined up so no point in stressing over what might not be. And even though I haven’t been feeling well, I’m still enjoying the family time as we slowly begin to get in to the Christmas spirit! 

Starting with our family tradition of cutting down our tree! 

Asher sure is watching daddy close!

Not to mention seeing Santa and enjoying the first snowfall of the year!

Leah and her snow angels!

πŸ’žToo blessed to be stressed is my new saying!! πŸ’ž πŸ˜‰ Hope you are all finding joy in the important things this holiday season. 

Okay, so my interpretations were half right…

I was finally able to talk with my nurse Pam in regard to my scan last week. My cardiologist does indeed have some concerns about one of my stents in the pulmonary artery, therefore, I will be returning to the heart cath lab for a procedure I have had done twice, making this surgery number three on the same spot.

I assumed I would need some type of intervention due to other areas where the masses have grown but since the results stated that my stents were open I was relieved that I would not have to deal with this procedure. Pam agreed with how the test results were confusing but stated after the doctor reviewed my scans he definitely had concerns and really feels one of my stents has enough narrowing that he wants to go in. Since I have not been feeling well and with the symptoms of a fast heartrate, chest pressure and palpitations, not to mention the deathly fatigue right Julie? Haha…I really can’t argue the fact that I don’t have to follow through with this surgery. 

But hey, my SVC stents look to be good and praying that really is the case so that I won’t have to go through this again next month!! 😜

So, while I have been trying to do my treadmill every other morning to build my body back up from being down so long from the back surgeries, now that my stents are closing and the fact that my heartrate gets up to almost 180 just from walking on the treadmill…I am taking a break from it until after my surgery so that I don’t put any extra stress on my heart that will overwork it and cause my hypertension to get worse.

What really stinks is that my surgery is scheduled for November 23rd, yep, the day before Thanksgiving.

I initially did try to tell the nurse that the date would not work and tried to reschedule but Pam hesitated and said that a pediatric cardiologist will also be helping my regular cardiologist with the surgery. She said trying to get their schedules to work together is like lining the stars up with the moon. Haha! 

If I do not go in on November 23rd the next date would be in December and she again stressed the concerns the doctor had. We also discussed once again that I have been having these symptoms for several months now and the sooner they can go in and fix it the better because the last thing we want is for the stents to close all the way, or the masses to completely block the arteries off because the longer we wait the more complicated the surgery becomes. And the chances of not being able to open up the arteries, veins or airways again. I don’t like it, but it has to be done.

Like I’ve said many times before, this is my illness, this is to be expected…this is our life. Sometimes it stinks, okay it stinks a lot but who has the perfect life without struggles right? I trust that God knows exactly what He is doing and while I am not thrilled to be in the hospital on Thanskgiving and missing out on all of the family holiday celebration time, it is what it is and like always, Tim and I will get through it.

 I am just grateful that doctors can still at least intervene and try to improve my symptoms and (yes to that darn doctor nine years ago)…focus on my “quality of life”. Again, if you don’t know the story behind “the quality of life” quote…go buy my book! πŸ˜‰

Female issues…maybe too personal yet too unreal not to share!

Okay friends, I have been debating if I should write about my follow up appointment that I had yesterday in Iowa City regarding the female issues I have been dealing with yet once again. And honestly, it was the PERFECT example of the way things go when you have a rare disease that doctors know so little about. It was so absolutely ridiculous that I figured yes, I will share my experience of knowing what is wrong yet not being able to fix it because I am rare!                          

If you remember, before my crazy back surgeries, I had another surgery that included three different procedures for the female issues I was having that involved a lot of pain and other difficult symptoms. Shortly after though, the symptoms returned, indicating the surgery did not work, however, my back then went out and due to me not being able to walk, that became my priority. Everything else was now at a standstill.

So, during the MRI of my back, they discovered I had a very large cyst and I was referred back to Iowa City. And finally, I made it back for the overdue follow up regarding the failed surgery six months ago along with an ultrasound and to visit with the doctor. 

The ultrasound revealed that my cyst was resolving on its own, but it also indicated that I had several new cysts developing. The technician literally said to me “well, be prepared to experience more of that pain you’ve been having”. I was also informed that they do not get concerned about a cyst until they are a certain size…and my cyst had been twice the size of what they consider to be concerning!! 

I then followed up with the doctor, and in this department, probably my 6th doctor I have had since going there for these issues. Yes my body is unique and yes I am on plavix which can cause undesired side effects. But, I have been diagnosed with unusual scar tissue and endometriosis, even though some doctors feel maybe this issue is really from my fm and not truly endometriosis…but my fm doctors deny that to be the case. I have tried everything from different birth control to ablation and procedures in order to fix my issues yet I continue to have such severe pain that it doubles me over at least once a week. 

A full blown hysterectomy is what I most likely need…even the doctor said this! But in the next breath she said that with my heart and vascular issues, they really don’t want to perform the surgery. So their plan?! Basically try to figure out how to control my pain until I go in to menopause!! Whaaaa?!?! I knew in that moment, this was another problem I was going to have to figure out how to live through the pain. 

But here comes the real kicker!! Next thing I know, due to some symptoms i described and from the testing and exams today, the doctor wants to refer me to a GI specialist…and start me on some type of physical therapy!!!!! OMGoshhhhh! 

Once she left the room to consult with more doctors I let Tim have it! Haha! I could not believe what I had just heard. They know my history with being diagnosed supposedly with endometriosis, and the procedures they did back in May were supposed to be the last resort before doing a hysterectomy! And really….the surgery in May wasn’t much easier anyway so if I can do it once….lets do it one more time and get it right! C’mon ladies…you know the sharp stabbing pain I’m talking about! 

The doctor came back in and began going over instructions with me as well as the referrals she had made. At this point, I was so dumbfounded by everything she had been telling me that I had to clench my teeth until I knew I would be able to speak without busting out in to tears of laughter. I asked if I agreed to see these next specialists and did the testing and it still showed nothing…would they do a hysterectomy if I still had symptoms?! Her response…”we can discuss it at that point”!!! 

I walked out of the room, looked at Tim and said nope, I’m not following through with any of this. What a bunch of crap! All because of my rare disease and vascular junk….they are avoiding the common fix to some of the most painful symptoms I am having. And what in the world with physical therapy??? What does that even mean?!?! Either way, this is where I have to draw the line!! Haha!

Thankfully, the whole conversation was so ridiculous that my frustration didn’t last long and all I could do was laugh! Even now I am laughing and in disbelief. They know the cause, the reason for what is wrong with me but won’t help me because of my dang fibrosing mediastinitis. Instead, I am getting pushed off to a different doctor. 

So there you have it guys! Quite an interesting day and one more thing I will probably be forced to suffer through the pain simply because my body is too complicated for doctors that they are afraid to do anything to me. 

Needless to say, Tim and I have already had a lot of laughs from this…mostly inappropriate jokes that I can’t share! πŸ˜‚ 

But, in a few days I might change my mind and decide to go through the next round of testing with the new GI specialist just to rule out any other possibilities that could be the cause for my symptoms…but we already know the reason!!! !😬😬😬😬 

I know this is a lot of personal information and I hesitated to share. But, I also feel like these are the exact situations we do need to talk about in order for more doctors to realize just how discouraging and frustrating being diagnosed with a rare disease can be. Yes I know I am at high risk but being so rare makes even the smallest things a huge ordeal leading to test after test, specialist to specialist or downright avoidance…the obstacles and challenges are  indescribable. 

And don’t get me wrong, I do appreciate the doctors trying to take their time and evaluate me before jumping in and assuming, but at the same time, I’ve been dealing with so much for so long, and know my own body better than anyone so please doctors, just listen to me! 

Ohhh how true my favorite doctor was when he called me “consistently complicated”. πŸ˜‰πŸ˜

Choose to make today a good day!

Good morning!

So I finally got to see some of my test results in mychart and from my interpretation, while my stents all look to be open which is great news, there does seem to be more  growth. However, it looks to be around my SVC, which would definitely explain the reason for my head issues…well, most of the head issues anyway! 😜 

And then there also looks to be that darn problem area in the right lung again but until I talk to the doctor, no reason to stress away the next few days with my beautiful family and gorgeous November weather that we are having. I didn’t mean to leave you all hanging on my test results but I haven’t talked to the doctor yet so I really don’t know much. Praying the progression isn’t enough to need intervention, and from the looks of it, I am guessing I won’t need to do anything quite yet, but if so, whatever it takes to keep pushing forward! 

Anyway, I really just wanted to share a blog from a FB page I follow. I was reading it while I was doing the treadmill this morning. Did you catch that?? I am doing the treadmill!! Hey, it might only be 7 minutes at a slow pace but my back, foot and leg are healing well enough that I am able to start exercising and strengthen my body again!! How amazing is God?!!!

And the blog I read was absolutely perfect! When our lives drastically change it is so easy to get sucked in to the negativity, the depression of not being the person we once knew ourselves to be… For instance, 7 minutes on a treadmill used to just be a warmup for me when I was young, yet now I am rejoicing over God blessing me with being able to do it at all! Appreciate the little things people…health issues or not!

Yes, life is hard, it really stinks at times and the hardest seasons sometime seems to last forever.  But if I keep comparing myself to the mother or wife or friend I was before my illness, I would still be extremely bitter and my life would be absolutely depressing and miserable. 

My body has changed but I have also changed. I have developed and continue to grow in a more personal relationship with Christ! So even though Tim and I are facing some of our biggest struggles, and not only with my health, I am finding peace and comfort through God’s faithfulness. My spirit is finally beginning to soar! Which just made me think of Isaiah 40:31! Go check it out! 😍

Anyway, we don’t always have a choice in our circumstances but we do have the choice…and the responsibility on how we react and handle them. Don’t get me wrong, it is hard to do and I still don’t always react the best, but I am conscious of where I go wrong and try to do better the next time I am faced with difficult situations. Live in the moment, focus on the good and find something every day to be thankful for!

Plus, this blog has a Beatles video so some of my readers should know who they are!😜 Haha! Here is the link. Enjoy your weekend everyone!


Sweet company

I finally had my heart follow up yesterday in Iowa City, however, I am still waiting for the results. Even though it was a very long and trying 10 hour day, which we always expect, yet hope for a quick in and out visit, I was beyond blessed to spend it with my husband and son! Asher did amazing! First off, he fell asleep on the way there almost immediately which I think really prepared him for our long adventure! He did however wake up in time to join his father in tormenting me with eating in front of my face, not only once…But twice!! And seriously…a diabetic going 17 hours without food is not pretty!After seeing my cardiologist, explaining my recent symptoms along with him doing a physical exam…and listening to my heart for quite some time, it was decided that we needed to do some labs and scans. Again, we expect this but always pray for a day of skipping out on pokes, nasty contrast and more radiation exposure from the machines. 

My doctor first wanted to confide in my pulmonologist to discuss his thoughts as well, and to see if my lung doctor wanted to run anymore tests on me before I left. They have been extremely hesitant to do scans because of the ridiculous amount I do on a routine basis. The last thing I need they said is to start having issues from all of the dye and radiation. 

The nurse had also explained that unfortunately I have “too many eggs in my basket”, making it extremely difficult to determine which problem is causing my symptoms. Of course back surgeries, the pain and stress on my body from all of that can also put more strain on my heart which already is working harder than it should be due to my fm but after my examination they felt it was best to do the heart angiogram with both doctors wanting to focus specifically on one area of my heart and one specific area of my lung. I am still hopeful that my symptoms have been full force due to me being more active since my back surgeries.

So we patiently waited in the waiting room while doctors hashed out their game plan and got everything set up. And Asher’s sweet contagious smiles and silliness… 

were truly God’s way of providing me comfort and amazing peace as I waited! 

Once doctors had talked, we were left waiting for another two hours before the next round of tests. Thankfully there had just been a cancellation or we would have been there longer! So, we hit all of the hot spots including the museum, library, gift shops and then spent the majority of our time on the roof enjoying the unusual warm and beautiful October weather.

And how deprived my child is that he has never been on an escalator so Asher and dad going up and down for ten minutes was a highlight of the trip…well for Asher, not for Tim! Haha! So labs were drawn from one arm and then as we were checking in for the next test I saw one of my regular nurses from interventional radiology and she stopped us in the hall to catch up on me. When she found out we had been at the hospital all day she told me to come and find her next time and she would make sure I got in immediately! 

If you have read my book, this is the nurse Deb who was able to talk my doctor in to giving me “bathroom privelages” when I had my blood clot and was not supposed to get out of bed for anything. So hey, if you haven’t read my book yet, make sure and go order it!😜

Anyway, she asked what I was having done and once I confirmed that yes I would need contrast she said “let’s go” and zipped me right back to a room to get prepped with an IV in my other arm. I must say, my enormous team of nurses and doctors and technicians truly do provide some relief…and lots of humor from our conversations to help lighten up the atmosphere when I am there so often.

And just like that we were done! Thankfully, with Tim driving and me getting something to eat right away, I did not get as sick as the last time I went alone and was able to make it home without having to pull over! 

I should be getting results back soon and was instructed to call my doctor by noon on Monday if I don’t hear back from them by then. I have been in this spot so many times and God has always gotten us through no matter what the outcome of my tests have been so I am prepared for whatever the results might show. 

This is our life and while the constant strain and pain and stress of one health issue leading to another health issue…we are okay! Each trip to Iowa City or each result from a test is another opportunity for Tim and I to grow as a couple, even though it can be challenging at times, and it is an opportunity to trust our loving Father even more! I know God is working through us and we have learned to appreciate the little things and when you appreciate the little things…you truly see how big they really are! 

So, while today I woke up in a tremendous amount of pain and fatigue, I was able to fight through another day and take the kids to the park by myself…not Skyler, not daddy…but me!!! It was maybe an hour tops between swinging, playing and walking across the bridge throwing rocks in the water! When we got home….from something so simple as taking them to the park…Leah and Asher went running to tell daddy all about it! 

Leah finished with telling him “this was the best day ever”…and I couldn’t agree with her more! Well, minus tonight when they decided to sneak a dry eraser marker upstairs to draw on the carpets but we’ll save that story for another day!!

Trials and blessings…

I am officially two months past my second back surgery so I will give a quick update on the little setbacks before I share what we have been up to! 

As for my back, I have definitely been doing a lot better than I was. I am walking without my walker, I am walking without my foot brace and I don’t have to use a shower chair! Amen to that and I never imagined I would be praising the Lord for not having to use a walker at my age!😜There is one particular spot, however, that has been extremely sore and has caused some new problem areas for me. Basically, my back has been so bad and I have been down for so long that extra stress was put on other areas in my back causing more wear which has led to more pain in which some of my joints are now being affected. The doctor did suggest a cortisone injection but I graciously declined.πŸ˜‰ 

First off, I am nowhere near ready to be going in for any further type of procedures. Also, I would need to be off of my plavix and then the injection would also make my sugars skyrocket and at this point, I don’t feel my health is stable enough at this time to be off plavix or to be messing with my diabetes. So prayers are appreciated that I can begin walking to build up strength so that my back does not get to the point of needing surgical intervention or injections again. 

As far as my fm symptoms go, they have been kicking in full force. My heart is crazy fast with the heart palpitations and I usually have to sit down to catch my breath after I walk upstairs. My head has had that fun filled groggy and “full” feeling at night, in the mornings or even when I am just out and about. But again, I am hopeful that my stents are still open, the masses have not grown and possibly my symptoms are just the result of me doing the most I have done in over five months! I do go to Iowa City in a couple of weeks for my heart and should be able to get some more answers then. 

That has been the downfall of my health but I am hopeful it’s simply because I am starting to become more active again! I am back to church on Sunday mornings, I am doing a women’s bible study one night out of the week, small group a different night followed by finally being able to participate in life again with my family!! And I am living it up!!

We have celebrated Asher’s birthday…  

We have done lunch with princesses…   

 Pumpkins and hayrides…   

Nathan’s 1st orchestra concert of the year…  
And we even got the chance to take Asher and Leah up to Wisconsin to check out the pretty fall leaves and buy some delicious apples! Okay, honestly, the drive started off a little rough! I for some reason felt extremely sick. My fm symptoms were raging against me, my head felt like it was going to explode, my chest was pounding, my heart skipping beats and my tummy was churning. Are you kidding me?!

None of us have ever had motion sickness but this trip was making me reconsider if it was a wise choice for my first outing after five months stuck at home to be consumed with hills…and lots of curvy roads for over two hours!! Leah had to go to the bathroom “really really bad” and Asher also complained that his tummy hurt…which yep, he looked like I felt! 

I will spare details but once we found a gravel road…we all felt a lot better! And I have to give a huge shout out to my hubby because that first hour was, well, a nightmare, and I only contributed to it!! Oh how I am glad God continues to work in Tim’s heart because I am a very challenging wife at times…okay, a lot of times!πŸ˜πŸ˜œπŸ˜‚

Once we made it to our destination, the rest of the trip went smoothly and we all had a great time! 


Asher is definitely feeling better! 
   Tim might have lost it though from the ride there…




I got about halfway down the maze and decided I should probably stay back and just take pictures!😜

  Not to mention, best donuts ever…  

 It has been a long slow road to recovery with my back. And while I do continue to have my share of health struggles…that is really nothing new. Tim says the ups and downs with the weather is hard on his cows so he is convinced that is what is causing my problems as well right now!! Have I mentioned how much I love it when he compares me to his cows?! 😜

Praise the Lord that I have feeling in my leg and foot though! I am even able to drive and get groceries! I am moving, I am walking, I have seen Skyler and the colorguard team perform at the football game along with watching activities that Nathan and Leah are involved in. 

I am thanking God every day for the amount of blessings He provides, for putting the right people in our path that continue to encourage and support us through such a difficult season.  

But, I have to admit, even though it might have been a distraction to those around us…the most encouraging part of the week…Asher got the giggles during church…which led to Leah laughing! To me that is the most precious sound but since we were in the beginning of the service, I sat down to silence Asher…and instead…I buried my face in his head and giggled myself…only to sneak a peek up at Tim to find him laughing! In the midst of such trying times…we still have laughter! God still provides us with joy! 

I am cherishing every moment given to me and have faith that God is capable of absolutely anything and everything…and I know He is using my broken body and this very long and challenging season for our good and to glorify Him.