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! 😉

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! 😂 

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”. 😉😏

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!

https://themighty.com/2016/11/how-the-beatles-song-hello-goodbye-explains-being-sick/

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!!

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.😉 

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!😍😜😂

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. 

So I had another blog started that I intended to share but something pretty cool happened the other night that I wanted to write about.

First of all we have been so overwhelmed by the amount of blessings we have been receiving from so many of you. And again our church has blessed us in ways we never imagined and there are simply not enough words to thank them for everything they have provided and done for us! I keep saying I can’t wait to get better so that I can be on the other end of providing the blessings to others instead of always receiving the blessings. 

And yet when I thank them, each and every one of them tells me that it’s really no big deal…but to us it is. It’s a HUGE deal! The meals, the help with childcare, just everything that you guys have done for us are tremendous blessings and we cannot thank you enough. You really have no idea how picking up the kids to play for a couple of hours while Tim is at chores, or providing a meal makes things so much easier…especially on Tim because he is the one stuck doing everything right now! 

And I really do continue to pray that there is going to be a day where I will be able to make a meal for someone in need…or I will do whatever I can to help someone who is struggling. You blessing us encourages and gets us excited to bless others!! And the best part about it all?? We get to explain to our kids that you are helping us because I am sick and you are doing what God wants us to do! 

God wants us to love each other and help each other and what an amazing example you are to our children. So yeah…it really is a big deal what you all do because you are also making an impact on our kids…and to me, that is the most important thing! Leah loves to pray at meals and has started to pray and thank  Jesus for having people bring us food…and for doing nice things for us! You may be blessing us with meals and childcare but you are also blessing our children by showing them how to be servants. How can we ever thank you for that?!😭

We even had one of the pastors and his family come over to worship and pray with us at our home one Sunday since I have not been able to attend church in so long, but again that’s in the other blog I had started to write so I will try to finish that up and share it within the next day or two.

But, the hardest thing for me with basically being bedridden was the fact that my daughter is in colorguard and Friday night was the first football game of the year. I am still having quite the pain and discomfort and of course due to the restrictions of me basically only being able to do extremely minimal walking, I was not able to go to the game.

And yes I am one of those parents who tries to make it to every event my kids are in but unfortunately that has been a struggle for me to accomplish because of my health this last couple of years. I have missed volleyball games, football games and then colorguard performances just to name a few. And with this summer of me having three surgeries all within a couple of months and losing some mobility of my right leg and foot, along with all of the restrictions, I was obviously going to miss the first football game of the season and that was killing me.

All week I continued to bug Skye asking her if any of the parents were going to be videotaping the performance or if their coach would be taping it and posting it on Facebook and she just kept replying that she didn’t know. 

So Friday night came and as she was getting ready to head back to the high school to get ready for the game, I of course started my routine speech of encouragement that she would do great, she had nothing to be nervous about and that their team always does such an awesome job. I wished her luck, told her I that I loved her and then when she got into her car and left I sat down and cried. 

Again, you might think I’m overreacting but when I encourage my kids to participate in things I feel it’s just as important for us as parents to be there to show them that we are supporting them. Because honestly what’s the point of them going out for something and then us not showing up? What does that say for me as a mom when I tell them they need to be participating in things, at least trying different opportunities that are given to them and having things to do because it’s important for them, yet then I never go to watch? Personally if that was me and my parents never showed up for my stuff I would be disappointed.

Anyway. Tim took the kids to chores with him and then I took a nap. My medications seem to make me very tired and I have also been struggling with low blood pressure so I have been sleeping a lot. When Tim got home from chores he said “hey I’ve got something for you outside I want you to see but give me a few minutes” so I said okay but thought oh great, what did he bring home now? Another cow? Another horse? What kind of animal? 

But, just like that I fell back to sleep. So Tim comes in again and said seriously are you ready to come outside but then again he said he just needed like two minutes and left and yes I fell asleep that fast once again ha ha! Finally he comes in and says he’s ready for me to come out so I went to put on my beautiful white compression socks that I wear for circulation and he says “uh you know, I don’t think you really need those you’re not gonna be outside very long.” 

I thought that was weird because he is always on me making sure I’m doing exactly what the doctor says but whatever, so in my lounge Iowa Hawkeye shorts and sweatshirt, Tim helped me up the stairs then I put on my fancy foot brace along with my tennis shoes, grabbed my walker and went outside to see Skyler and the entire colorguard standing in my driveway! 😩😭😩😭😍😍😜

I immediately started crying and Melissa, the coach stated since I couldn’t come to them they came to me. And then they went on to perform an amazing routine and yes I cried the entire time, I cried after they left, I cried when I called my family and friends to tell them about it and yes, I’m crying right now!🤓I’m just so overwhelmed by the surprise and the thoughtfulness of these young ladies and men who went out of their way to do this for me.

This is an excellent example of the character, the kindness, the generosity and the support not only that the coaches and instructors and the principals demonstrate but also that the students have at our schools and what great role models they were for our younger kids! Leah absolutely loved it!

I believe this is by far the best surprise I have ever received and you young ladies and gentleman have no idea how much it meant to me so thank you very much.

Here is the video…

 https://www.facebook.com/permalink.php?story_fbid=1765434193742636&id=100008282165875

Love you always and forever Skyler and I didn’t want to let you go!💞💞
 

Well I’m back already so that didn’t take long for things to change…but I guess that should be no surprise right?

So I believe I left things at if anything major changed I would make sure and keep you guys updated. Well as stated in my last blog, I was starting to walk funny and getting a little more pain from the first back surgery I had just done. If it got worse I was instructed by my doctor to call them and they would schedule another MRI. This was on Wednesday…and by Friday morning I was not able to walk again.

I called my doctor and informed them of my symptoms stating that I almost felt worse than I did before my back surgery so of course they instructed me to get to the ER. Tim had already left with Leah for chores so I called my parents and they came and picked me and Asher up to take me to the emergency room. The pain in my leg was excruciating so I was not able to even pack a bag or get Asher cleaned up. My parents helped me out to the car and cleaned Asher up along the way because, well, that kid never has a clean face.😋Edit

Once to the ER, it was very apparent that I was not able to stand so the receptionist brought me a wheelchair, however, the pain was also back to preventing me from sitting long so I was alternating as often as I could from sitting to standing but fortunately the nurses could see my discomfort and immediately took me back to get checked in and then they sent me straight back to a room. 

The ER doctor came in to visit with me about my symptoms and explained that this pain could simply be inflammation even though it had been three weeks since my surgery. I felt some instant relief because the last thing I wanted to do was have another back surgery. The ER doctor was in communication with my original doctor who did my surgery and he ordered another MRI which was a little tougher this time due to being in such pain and having to stay still flat on my back for 45 minutes. Needless to say I did a lot of praying and focusing on the words of the songs that I was listening to. 

Once back to my room, I couldn’t help but giggle to myself as I watched my dad and Asher kill time by playing their separate games on their separate tablets. And as much as Asher would lean over to show my dad the progress he had made on his game, my dad would do the same thing by tapping Asher on his shoulder and pointing to how far he was on candy crush ha ha…all while my mother just shook her head and rolled her eyes! And as entertaining as this was to watch I could also see the worry in my parents faces.

I was given some pain medication that did provide some relief but trust me I still had quite the pain. My parents continued to encourage me that everything would be OK because God knew what He was doing. We were hopeful it was inflammation and the worst thing about that was I would have to take some pills that would totally spike my blood sugars but at this point I was willing to deal with crazy high blood sugar instead of the pain I was dealing with now. And then the doctor came in…

The new MRI indicated that my back was actually worse than it was before the first surgery, therefore, I was going to be admitted to the hospital immediately. Unfortunately, due to me taking Plavix for my heart and stents, they were not able to do surgery until that medication was completely out of my system. The doctor explained that with spinal surgery the last thing they want is too much bleeding so they wanted to make sure the Plavix would be out of my system because this would be a much more risky and intense surgery.

I was frustrated and questioned how my back could be worse. I even pleaded my case stating that I had done everything by the books for three weeks! I hadn’t been stubborn and pushed myself! I hadn’t done any lifting, bending or twisting and our wonderful church family had provided meals so I didn’t even cook! The doctor agreed and assured me it was nothing I had done. He had said from the first surgery I had some more space than normal in an unusual spot and it did concern him when he did the surgery. He was worried about that spot due to so much damage as well and that is why he had prescribed me a brace to wear hoping that might give my body enough support and not re-herniate, unfortunately that was not the case.

So I was admitted to a room for five days in order to control my pain until the Plavix was out of my system and the surgery could be done. This too was a challenge as communication was a problem in the beginning between nurses so some of the medications were not given to me and I did not have any relief from my pain.

But I kept praying and I had hope that this second surgery would do the trick because the first surgery had given me instant relief for two weeks and it felt amazing. This surgery was more intense as he was going to fuse two of my bones together and in fact ended up fusing three of them due to the third bone showing some wear so he was afraid if he didn’t fix it now that I would have problems with it in the near future.

So the morning of surgery after I was prepped and ready to go… I said my “see ya later” and our I love yous to my parents and my husband. It was to be a 2 1/2 hour surgery and I would see them shortly. But once again unlike my oxygen being low with my last surgery and causing problems, it was my blood pressure that was extremely low this time,therefore, my family was not able to see me until 10:30pm that night which was about 10 hours later than planned.

And of course due to me having  dangerously low pressure of 80/40 if not lower, and the fact that pain pills cause blood pressure to drop, I was not given the option to have pain pills so after one of the most painful surgeries, nurses resorted to ice packs and Tylenol to provide some sort of relief…which did not work. 

I do remember being very uncomfortable and in a lot of pain and I do remember questioning why once again everything had to be so complicated and hard for me. From the start of this back problem nothing (according to my plan) had gone right.

The course of my back problems began when I tried physical therapy and injections but still ended up not being able to walk and had emergency surgery, which lasted for 3 1/2 weeks before I could not walk again with extreme pain and was hospitalized but had to wait several days to have the surgery in order to get the blood thinner medication out of my system to avoid excess bleeding…and then the low blood pressure causes me not to be able to take any pain medications for such a painful procedure…oh, and don’t get me started on the 19 pounds of fluid weight I gained by once again lack of communication!😬 

In my mind I felt like everything that could go wrong did, in fact it went more wrong than I ever could have imagined because seriously…how many people have these many issues? I just couldn’t understand why and how much suffering God has been putting me through.

The day after my surgery my blood pressure slowly began to rise and once it got up to 98 the nurses began giving me pain medication but then it would drop my blood pressure again so we would skip the next round of meds. This was the game we played for the first day until finally my blood pressure stayed up enough where we were able to be consistent with the pain medication which made me comfortable enough to get up and walk! And the kids enjoyed going for a walk with me also…  After my family and company left one day, which I truly did enjoy all of the visits, I thought about my situation and laughed out of disbelief. Nothing with my health seems to go smooth…if there’s a chance of an obstacle I better be ready to jump! I know I might not get answers right now as to why this is happening and why everything seems to be such a struggle but that’s okay! After the surgery and before the surgery when the pain was so horrific all I could think was “Lord, my suffering cannot even begin to compare to the suffering that Jesus had when he died for me on that cross.” So really, I am okay! I can’t complain.

As for recovery, the doctor did stress that this will take a lot of time with minimal movement. I cannot drive or even be in a car which means all of the important appointments coming up in Iowa City next week for my heart and female issues have to be pushed back at least one month until after my 3 week follow up on my back…which is disappointing since I still continue to have issues with my low blood pressure and fast heart rate.

I will also be using a brace along with a walker because of my leg/foot being so numb that most likely I would fall, which I do tend to stumble at times even with the walker. The doctor described just how bad my muscles and nerves had been, and bad for so long, so I would be dealing with pain and limited mobility for quite some time, however, he does have some confidence that the use of my foot and leg will come back…with time. He also showed me some scans where he put in rods, screws and spacers….and with my eight stents I just might be the next bionic woman😜  
With my right foot being numb I can’t move it in certain directions and then my right calf about halfway down is also kind of like deadweight so while I can walk on it with a walker, when I get into bed I have to use my hands to pull my leg up or I will use my other foot to kind of support the leg and kick it up. I also can get on all fours on the bed and then just kind of drop down and use my hands to reposition my leg. It is quite the site to see me do this and the doctor even laughed when he asked me to show him how I was adjusting, saying this was the first he had seen anybody try it like that.

So once the doctor and I had a good laugh I was discharged back home!!      And better yet the kids were waiting home for me (with my walker) when we pulled up…    The family was wonderful enough to make our basement pretty much in to my own little apartment so I’ve got a fridge down there with a microwave, a bed and a treadmill because I will eventually be able to walk on the treadmill for five minutes a day.    

   
And Skyler found a place to display all of the beautiful flowers, balloons and stuffed animals I got delivered to me at the hospital from all of my wonderful friends and family…  

Tim has also been great doing everything with the kids and Skyler has been absolutely amazing with making sure I have everything that I need. I came out of the shower one night, which I was excited to do on my own, even though I had to use a shower chair, and when I came out Skye had my supper sitting on the table for me!  

Everyone has been so supportive and is filling me with words of encouragement! It means so much to me knowing I’m not in this alone and I am so thankful for each and every one of you!

And while I know this is going to be a slow process, it just amazes me how God uses these type of situations for good and to glorify Him. But I was kind of thinking one day, “hey Lord I think I’ve done a pretty good job of growing and glorifying you in my suffering so could we be done with this part now?” ha ha!

I don’t understand why God does what He does, but the amazing family and friends and blessings we are surrounded by shows how He is faithful and steadfast in His love for us. 

   

As always, thank you for your support and prayers!😍

Can you believe I’ve been blogging for almost two full years?! Wow, that’s a long time of sharing our lives with you! And while the support has been absolutely overwhelming, I think it’s time for me to take a break from writing…at least publicly that is. And don’t get me wrong, I will update on my health but only if something drastically changes…just won’t be as consistent with blogging as I have been in the past.

The whole intention of me starting a blog was due to the fact that I had some new issues arise with my fm. I knew the process would be challenging, to say the least, in order to figure out what was going on with me. I wanted to show what it’s like when diagnosed with a rare disease, and the many obstacles and testing and appointments…the discouragement…yet the hope, that comes along with trying to find answers. While I continue to face ongoing challenges, God always sends something to put a smile on my face so I hope I have accomplished what I set out to do!

And the funny thing is, it wasn’t too long before I started blogging that I was writing in regard to my leg pain!!! Haha! Hey, two years later God has blessed me with at least one answer! That’s a start!😉

Unfortunately, with the other initial issues I had written about, I thought I would have had those answers as well and been more stable by now but that is not the case. In fact more issues continue to come up…but they are my “typical” issues, if that makes sense?! 

While the recent MRI of my back resulted in me having emergency back surgery, I am still continuing to struggle with some pain and numbness. I was under the impression this was to be expected but after my follow up appointment today, no…it’s not. I have given up my pain pills due to them making me extremely sick so this is possibly why I may be noticing more pain. At least that is my hope! If I am not better by Monday, I need to call the doctor and they will schedule another MRI of my spine to see what might be causing my reoccurring symptoms. Not excited about that…

I am also back to walking “weird” according to Tim and Skyler. I am definitely not walking tall anymore but I am still praising God that I am at least walking and the pain is nothing like it was before my surgery!! 

I will admit though, I hit another weak spot today and when I came out of the doctor’s office I was frustrated and started to tear up, telling Tim I was sick of it all, sick of not getting better. After 7 years, Tim has learned he’s better off not talking during moments like this!😜

Instead, his response to my cries is to turn up the radio and rub my back in efforts to comfort me as I keep my face turned away from him…my pathetic attempt to hide my vulnerability. But his silent gestures definitely say more than enough and then the first song we heard on the radio was playing at my favorite part…  

The MRI findings also showed that I have what appears to be a very large cyst on my right ovary. I was encouraged to follow up with my other doctor in regard to that, which I did. I was confident it would be no big deal because back in May an ultrasound I had done also showed cysts so I had underwent surgery to take care of all the female issues I had been dealing with. 

This, however, is a new cyst that has grown very large on my right ovary in just the last few months and the other cysts noted back in May had been on my left ovary. Needless to say I am scheduled for another ultrasound.

I will also be seeing my heart doctor in a few weeks as well to monitor and address the new heart symptoms I have had since December…basically the same ole story for us. But, for those of us who struggle with something so rare…this is the life we live. Our bodies think they are protecting us but in reality they are destroying us. One health issue to the next…a chain reaction in which one problem triggers another problem. 

With that being said, I have given you some clear pictures of what my good days look like…and a glimpse in to surviving a bad day so at this point, I do not feel like I need to continue blogging in regard to the regular “routine” symptoms and appointments. 

It’s just that with our situation “burn out” can happen and I don’t want to get my readers to that point…especially our friends and family. While my illness is extremely serious, I have been living it for 14 years…7 of those years Tim has been living it too. It gets frustrating, exhausting and the seasons get long…VERY long. 

So, Tim and I have no choice but to manage and learn how to live with the different level of challenges we face on a daily basis. Some days better than others but we are faithful in prayer and trust that God is answering our prayers the way that He sees fit…even though sometimes I don’t understand and wish He would have answered them differently! And some prayers we are still waiting on but He knows what is best more than what we think is best…and here was the next song that came on after Danny Gokey…

Okay God!! I hear you!! I am listening and trusting…and working on obedience!!!😉

I seriously cannot express the gratitude I feel for all of the prayers and support and willingness to help…even from those we don’t know! You have all provided us tremendous comfort during some of our tougher days!

And while the response has been so overwhelming, I do hope you can all understand that for now, I think it’s just best to take a break from blogging. Tim and I have been in a tough season for the last few years and it looks to stay that way for awhile but we are surrounded by amazing family and friends! God’s Grace has held me up for the last 41 years…and I trust that He will get me through the next 41!😍

I will definitely stay in touch with my health updates but please feel free to continue and contact me through email, Facebook or Twitter! I am always up to chatting and answering any questions and I love getting to know all of you!

Oh, and hey speaking of that…remember to tell others about my book, I’ll Take My Disease Rare Please, as well…and seriously people…between twitter, Facebook and my blog, I have over 600 friends/followers yet only 14 reviews on Amazon??? 

C’mon…please just take a few minutes out of your day to give it five stars…you don’t even have to comment!😜😍😂 

But, most important…don’t forget…make sure and find something to smile about in each and every day…here’s my something…my everything…which is all I need! 😍😘😍 God is so good!!!  

       My family that I love dearly and have been so supportive! They have laughed and cried with me and been a true blessing on some of my really bad days…through my entire life journey!!!😍  

    Then there are these wonderful ladies! My wonderful mom, my favorite aunt😉 and a few of their crazy cousins!! Beyond blessed with such loving family and friends!😍☺️  And PLEASE continue to keep Aaron and Cathy, my amazing brother in law and sister in law in your prayers as well! Their faith and sense of humor throughout their own cancer journeys have been a tremendous encouragement to me!!  So, sorry Lalk’s but love you too and I’m one of you!😜😬 Each and every one of you has reached out to me with verses, songs and words of encouragement when I needed them the most so had to share the only pictures I have!!😍 

And can’t help but love this picture from a few years ago even though Aaron might hate it. He was the first person I knew so close to be diagnosed with cancer. Very difficult to see but at the same time, God has His hand in all of this and from an outside view I can see Him working in and through Aaron and Cathy…the Lalk’s have faith that will not be shaken!!

        

Love to you all!!!!

Another week down and I have slowly been making progress. I’m up and moving around as much as my body will allow me. I have still been struggling with nausea but thankfully I was finally able to make it back to church on Sunday followed by the tradition of enjoying Sunday dinner with the family!

This week was also the Bremer County Fair so Tim and I decided to take the kids down to watch our niece and nephews show sheep. I was so excited to get out of the house!!! Minus getting out for church, I had yet another opportunity to get out of my lounge clothes!😜

Unfortunately though, once down to the fair, my body told me it was too soon so I did a lot of alternating between sitting and standing. I absolutely loved being out and seeing my kids able to enjoy themselves though! But I was also able to listen to my body and not push myself. Miss Leah pretty much petted every animal she could get her hands on… 

     While Asher attempted to pet them from a distance…  I think he preferred sitting on the bench to keep me company…    I was also able to take Leah and Asher over to a slip n slide dinner party with some wonderful friends the following day! I am so thankful that another friend offered to pick us up since I am still on no driving restrictions! The kids had a blast and I loved being able to visit…ADULT coversation with great friends and delicious food!!

Needless to say, this is the most I have been able to do in the last nine weeks and what a blessing it has been!

With that being said, it was also enough to tire me out so I have been taking it easy the remainder of the week which means no more outings. I am definitely learning my new limits in regard to my back and leg and I also continue to follow the strict doctor orders of no lifting, bending, twisting or driving. But I will admit…it is a challenge!

Next week I will have my three week post surgery appointment and then it is also time to register kids for school and dance!! Our schedule is going to start picking up so I am praying I will be able to start driving again next week even though I will still have another three weeks of recovery!😬

I again cannot thank all of you enough for your encouragement and support through this very long season we have been enduring. Our church family has continued to provide meals and my parents also came one day and prepared meals for us to freeze so we just have to warm them up at our convenience.

Texts, calls, meals, prayers…all of the gestures that you think are simple or nothing to be thanked for are truly huge blessings to us and it is because of you guys that Tim and I can put smiles on our faces during some of our most challenging days! Thank you!!

Hope you are all able to enjoy your weekend!

Oh my goodness I don’t even know where to begin!

As for my back, I am sore from surgery but again, nothing like I have been experiencing the last six weeks! I am following doctor orders and listening to my body when it is indicating for me to rest. Friends and family have started bringing meals for us and the first night I sat down at the table the kids seemed so confused. Again, over six weeks it has been of me not eating at the dinner table due to being in too much pain to sit through an entire meal and kids were ecstatic when I was able to join them!

Finally, family meals again where we can catch up on each other’s day and visit about what we would like the rest of our summer to look like! 

As long as I rotate positions between laying, sitting and standing, the pain is bearable. However, I am still not able to travel long distances in the car, preferably no longer than a 10 minute drive. But I am okay with that!! It really has only been five days since my surgery and I am extremely grateful for the progress I have made thus far! 

And today, what an overwhelming day of being blessed by my family and friends. My aunt Barb apparently set up a “cleaning crew” to come over and clean our house! Don’t get excited though…they specifically said they won’t do this for just anyone! 😜

So bright and early this morning, my aunt Barb, my mom and then their cousins Lori, Diane and Suzan all showed up with cleaning supplies, vacuums and plenty of food!

While I know some of them are pretty determined when it comes to cleaning, it wasn’t until I heard my aunt Barb say “let’s walk through and assess the situation,” that I realized this was probably going to be a little more intense than I imagined!😍

Once they had an idea on what needed to be done they got their game plan figured out as to who was doing what…  …and then it was go time! When Suzan took a rug outside to beat it and a storm of dust came flying back at her, she got a good taste of how much work they were really in for!! Followed by sweeping, dusting, polishing, stairs, toilets, bedrooms…   

   

 Even vacuuming beds?! And that was all before lunch…which according to aunt Barb…lunch was scheduled for 11:30am…no sooner…no later, just kidding! 😜This gave us an opportunity to pose for some pictures…and ya gotta love Skye’s photo bomb…        

 And our friend Alyssa came over to visit and help out as well while Leah and her daughter got the chance to play together! Alyssa and Asher worked out in the garden picking beans, lettuce and a lot of weeds! She totally made Tim’s day when he came home to see fewer weeds in the garden!

Tim and Nathan were also able to grab a quick lunch before heading back to the farm!    After some good food, everyone was back at it to finish up the last loads of laundry, more sweeping, more mopping and a quick run to Wal-Mart for last minute supplies! 

And instead of one mom telling me to lay down, I had five moms staying on top of me to make sure I wasn’t overdoing anything. So while resting,   I think by far the best part of the day was listening to what these women said to each other and all of the laughs that they shared…sometimes at each other’s expense!  

And while I would love to share some of the things I heard…we were all sworn in on oath, by aunt Barb of course, that what is said or happens at the farm…stays at the farm!😂😂😂 

But, to give you an idea of some of the craziness that went on…my mom and Lori came in to show me what Suzan was using for rags to clean with!😳We might need to go through and clean again!😂😂😂  What a long day for everyone and I cannot begin to thank them enough!! Every room in our house became spotless, even the wooden floor and stairs seemed to shine! Tim said we have to eat outside from now on!😉

We gave aunt Barb a hard time for being in charge and a working fool but everything got accomplished!!😀

Aunt Barb was also the last one to leave, give me hugs and say goodbye…and once she was out the door I sat down and just cried…overwhelmed by the amazing support from my family. Aunt Barb drove a couple of hours while the others didn’t have to drive as far, but still sacrificed a day to help me out. They cleaned, provided meals, bought new bedding and rugs and supplies for our home! And throughout the full eight hours that they were here, they still gave the kids attention and made sure I was doing okay…making sure I didn’t need anything along the way! 😍

I also know that while I would love to do something for them in return, they would not accept it. I love our family and I love how they have rallied together in order to provide Tim and me some comfort in having one less BIG thing such as housekeeping…to worry about during my long road to recovery. And I think this is the first time EVER that I have no laundry!!

So to mom, aunt Barb, Lori, Suzan, Diane and Alyssa…thank you…thank you…thank you for being such a tremendous blessing to our family! We love you all dearly and know God is going to bless you all because of your extreme kindness and generosity!

And thank you to our great kids, especially Nathan and Skyler for helping extra around the house and farm as well!

Overwhelmed by all that the ladies have done today but it makes life so much more enjoyable when clutter is no more and our living environment is organized!

From the bottom of my heart…thank you!