Temporarily fixed as usual

As I was sending my family off to church tonight and zipping up Asher’s coat, it was hard for me to hold in the emotions that have consumed me from such a stressful afternoon. 

Today I had eye surgery for my left eye…hence the letter “L” sticker on my forehead…😜

And it was as fun, if not more fun, than the right eye surgery I had done two weeks ago. Yes, that is pure sarcasm.

The afternoon was a tough one due to the uncomfortable burning sensation in my eye, the pounding headache and a sudden onset of not feeling so well after the laser. My vision is still off and I am praying it will just take time for my eye to adjust back to normal. These surgeries are to help prevent any type of vision loss and as much as I flinched from pain during the laser surgery today, I can’t help but wonder “what if I jolted too much and it caused the doctor to zap me where he shouldn’t have.” 

Once I was done and we were back out in the car I joked with Tim about the fact that yet once again, his “magnificent” beard was a topic of conversation! But then I sat quietly the rest of the car ride home. 

Of course I am extremely relieved to have the surgeries over but at the same time, just like my back and my heart, my lung and all the other fibrosing mediastinitis and health junk…the surgery is not a permanent fix. I will always have these problems, and just like all of my lung and heart procedures, I will eventually have to go through all of this eye stuff all over again too…for the rest of my life. Today was the sixth laser eye surgery for my left eye and the right eye has been done twice, all over the past four years. I am hopeful that with my diabetes back under control and with my fm being stable at the moment, that I will be able to go a little longer than the last time before injections or intervention is needed again. 

And while laser surgery is no fun, especially because my eyes get more sensitive the more I have it done, I am extremely grateful that the doctor is catching it soon enough to help prevent any loss of vision. Actually this can be said for all of my other doctors and health issues…the symptoms and tests and procedures are no fun but I am thankful that I still have options available to help me.

Today was definitely a hard day but that doesn’t mean I am giving up or losing hope, it simply means that today was one of those days where I pushed through the pain and smiled through the tears…because I definitely have so much to smile about.πŸ’ž

That rare word again…

Improved!! The word “improved” showed up once again in another test of mine…the pulmonary functioning tests!! The test that I usually get “good patient effort” for had better results this time around!!

I was fairly confident that the follow up for my lung appointment was going to go smooth so I had told Tim I would just go by myself. He was a little hesitant but I assured him that everything would be fine. 

Once to the hospital, I checked in and waited for my name to be called. The nurse that met with me first went over any symptoms I had been dealing with and did my vitals. Blood pressure, lungs, heart and oxygen all good so far!

Then the medical student came in introducing herself. She admitted that she had not heard of my disease so she went to prep the night before our appointment and that is when Dr. Hornick informed her I had written a book. She followed by saying she learned a few new things from me! I refrained from asking her to write a review on Amazon even though I knew if my husband had come with me he would have interrupted and told her to do so!

I reviewed my symptoms with her and I also shared with her that I was up to doing about 30 minutes of exercise five days a week, yet was continuing to gain weight and questioned if I should be concerned about that. She said she would talk with Dr. Hornick and then he would be back in.

Once the doctor came in we discussed my symptoms yet once again. I let him know of my exercise regimen and have to admit that I felt pretty proud to say that I am exercising on a regular routine…that I am ABLE to exercise! He seemed pleased and explained how the stronger my leg and back muscles become, the less my heart has to work which will also help with my hypertension. He encouraged me to keep doing what I was doing yet stressed the importance that my heartrate not get above 160. Oops…I might need to slow my pace a little then!😬

I also mentioned my continued weight gain and he informed me that by no means was I overweight or at a weight that we needed to worry about yet. He also stated that the fact I’m gaining weight could be a good thing if it’s what he was thinking.

He explained that my illness is all inflammatory and when my body is working extremely hard to fight my sickness, I will actually lose weight when I’m not trying to because of the way my body is fighting my disease. He said the fact that I am gaining weight could be a sign that my illness is stable. And the fact I can exercise as long as I am without getting extremely short of breath or without my oxygen dropping down to dangerously low levels…are also indicators that I am most likely stable for now! 

He then said he would like to have me do some pulmonary functioning tests to see how they compared to six months ago. He stressed the fact that while I have been exercising, he really did not expect to see much change in my breathing tests, let alone improvement. Because, while I was getting stronger physically, these tests were measuring something completely different…strictly my lung capacity. He told me not to get disappointed if the numbers were even lower than last time even though I am feeling physically stronger. I agreed saying that I was doing the most I have done in a long time and would not let any numbers discourage me! I mean, I could barely walk seven months ago!! So the plan was that I would go do my breathing tests and if there was a drastic decline I would come back and meet with him, otherwise if they were about the same I could go home.

I headed over to the next department and then got called back in to the telephone booth like box where I began the tests. Once I was done I waited for the tech to compare my last results and there it was…I could see the comparison on the screen…the abbreviations Imp%…meaning…IMPROVED!! I could barely contain myself as the tech read that word out loud and told me I was free to go! I was ecstatic as I walked out of the hospital!! In fact, so ecstatic that I took three flights of stairs instead of the elevator…just because I could!!! But my pounding chest and throbbing head reminded me how lousy I always feel after the effort I put in for those tests so maybe I should’ve taken the elevator!

Once to the car, emotions of joy consumed me and I couldn’t wait to call Tim and tell him about my good report because the word “improved” on any of my tests is as rare as my disease!!😜 

Again, I know I am not cured but like my doctor said, I am surprisingly stable at the moment. I know things can change fast and drastically so I don’t want to pass up on any opportunities available to me on my good days…even something as little as taking the stairs instead of the elevator! I understand what this disease is capable of because of what it has already done and that is why I am going to do as much as I can (without pushing too hard), for as long as I am able! 

For now I am making doctors shake their heads because I am improving! And I am going to fight to keep them guessing…not because of how mysteriously sick I am…but because of how miraculously well I continue to do!!

Faith, love, health and time are precious gifts that should never be taken for granted. It took me over a month to be able to walk 2 miles without my heart feeling like it was going to beat out of my chest…and for the ache in my back to subside! While I am defintely not where I was at 15 years ago physically, I am beyond where I ever thought I would be 15 years later spiritually and I am beyond grateful for that.

God is amazing through my encouraging fm results and He is still amazing through my discouraging eye surgeries…because I know He has me and will keep His promises! I know when I get to my final destination…He will give me ultimate healing! My pastor has often shared this verse with me…and what a great reminder it always is…

“When we hope in God, we pursue and experience joy in the midst of suffering”

Well kids…yesterday was no fun! I should know by now that no matter how many times I do any type of procedure or surgery or test…that things always change when least expected.

Went in for a laser eye surgery to seal up the blood vessels that were hemorrhaging and they did my right eye…my “better” eye first. As they started to prep me for the surgery I noticed a few things were different but nothing major. They tested my vision, checked my pressures then applied the dilating and numbing drops. And then I waited patiently for the doctor to come in and administer the dreaded shot in my eye that would numb it even more and cause it to swell and puff up. 

Instead, my doctor came in, turned my seat, gave Tim the sunglasses to put on…and began the laser surgery. It all took me off guard and happened so fast that I didn’t have a chance to ask questions.

Okay, a little stinging to start out and before I knew it I was flinching and pulling back in my chair. The pain and bright light made it impossible for me to keep the tears from running down my cheeks as he continued with the laser, apologizing every so often and assuring me we were just about done. I tried telling myself I’ve been through so much pain with other procedures that I could do this but my self talk couldn’t distract me enough from what felt like an eternity of my eye burning so I started praying repeatedly “please God let this be over…now!” 

Finally, after a very long ten minutes we were done. I sat back, wiped my tears that were continuing to flow and before I could ask, Tim beat me to the punch and asked why I didn’t get the shot in my eye. The doctor explained that they had discovered there was too much risk involved of actually doing more harm than good with that type of anesthesia so the injections were no longer being approved by insurances companies. Nice.

I asked if that was why it hurt so dang much this time and he explained partially but also the more laser you have done the more sensitive the eyes become. I did not find this very encouraging beings how he did my right eye which had only been worked on once…and as much as that hurt, I can’t imagine what the left eye will feel like since that has had the laser five times.

That was that, not even a patch to cover up my eye so I reluctantly scheduled the next laser surgery for my left eye then we were on our way.

Overall, I think I handled it pretty well. I didn’t really yell at Tim haha but instead sat quietly the whole way home and tried not to cry.

When I got home even the kids were confused as to why I didn’t have a patch and Skyler asked if I even did anything. Tim went to chores and as soon as he got back home I went to bed and he took over with the kids.

My eye had that sharp painful feeling as though there was dirt in it all evening so it felt really good to lay down and close them. So many other sad things have went on this week and I reminded myself that if this was the worst of my circumstances then I really had to be thankful. 

I also started thinking about what we had discussed at our Wednesday night bible study as well as the previous sermon and again tears welled up. There is so much pain and sadness in this world and I can’t imagine going through life without having the hope in Jesus Christ. Having faith and believing that there is a heaven and someday the trials on this earth will be no more. And even better, there will be no sickness or death or sin…pure happiness and love and peace like we can not even begin to understand in this lifetime.

I have attached the sermon from last week February 26…please take some time to listen, especially if you need some encouragement…


I spy with my little eyes something not fun πŸ˜œ

Well, the dreaded eye appointment I had scheduled for last week went as expected.  But before we get to that fun filled adventure, let’s discuss how my follow up for my diabetes went!

First off, I have got to say I have been doing the treadmill faithfully now going on four weeks…five days a week with a pretty aggressive incline and speed. And I love it!! I love feeling the “burn” from an actual workout instead of feeling the lack of oxygen from walking up the stairs!πŸ˜‰ I had been monitoring my blood sugars and from the times I was checking them they were pretty spot on. By now I am well aware of how to compensate the amount of insulin for what I am eating. Sadly, my lab results said differently and somehow my sugars  got completely out of whack over the last few weeks.

I am a brittle diabetic, extremely sensitive and hard to control my blood sugars because of extreme health issues. While I have been so encouraged by exercising, my doctor does feel the amount of exercise actually put too much stress on my body, causing my sugars to go all over the place so she recommended a new pump for me. It is one of the most recent devices that will be out on the market in April. The new pump will also have a sensor to help monitor and regulate better blood sugar control. While this is great, it also means that I will have two infusion sites, one for the sensor, then one with tubing to deliver my insulin, like the one I have now.

I am trying to remain positive because I know the pros will definitely outweigh the cons but the thought of two sites inserted into my stomach or hip just sounds like a pain…literally!

So, that was Wednesday and then Thursday came along and it was time for my eye appointment. I was called back almost immediately after I arrived to the doctor’s office and the fun began…not. I started out pretty good with 20/20 vision while wearing my glasses and then my eye pressure was also great! Okay, things are going well…maybe I will be pleasantly surprised with this outcome like I was with my back!

Once my eyes were fully dilated I was called back to yet a different room where a few pictures of my eyes were taken. And due to the fact that I have done this several times in the past, I knew what her hesitation and then going to speak to the doctor meant…

Yep, I had to get that nasty red dye injected into my arm so that they could get more detailed pictures of the vessels and potential damage that was occurring in my eyes. And even at the eye doctor, I was once again reminded by the tech that I am “just way too young to be having problems like this already.”

The doctor then reviewed the scans with me, referring to my case on numerous occasions as “complicated,” that he was so sorry for my “tough situation” and when explaining why and what was causing all the problems, he repeated it had a lot to do with my overall “bad health.” He explained that a combination of diabetes and my disease is a “very bad deal” and he questioned if I was on any type of oxygen therapy.😞 He also informed me that I have new swelling and vessels that are hemorrhaging so laser surgery is required…for both eyes. Darn it!!  I’ve already had five laser surgeries on my left and one on my right…at least I think that’s where I am at, after so many I tend to lose track.

Before I left however, not only did I get poked in the arm twice to find a vein for the contrast they had used, but I also got an injection just below my eye. This is to help take down some of the swelling vessels before I have laser surgery on my eyes im the upcoming day and weeks. A little pinch and sting from the shot then I was on my way home…

It got a little puffy but after a couple of days it was hardly noticeable.

Definitely not a great week for checkups but dang, after my whole back ordeal, I am just thankful that I can drive to my appointments and walk on my treadmill…taking it back down a notch of course. πŸ˜‰

But, in the middle of all the lousy appointments, we also had a great couple of busy weeks getting to see Leah do a school performance, Nathan had an orchestra concert and Skyler had a band concert! And I was beyond grateful that I got to attend them all!!!

It’s all about finding joy in the midst of troubles! πŸ’ž

“Wow, that is a lot of hardware you have”

Ahhh, I have learned to become entertained by the things said to me when discussing my rare disease…and now, with two back surgeries under my belt, including a fusion at “such a young age,” I can add that to my list of things to shock others with as well!

Today was my six month follow up from my back surgeries so I had to get an X-ray  to make sure everything looked okay before meeting up with my doctor. The technician had me change in to some of the fabulous blue pants before performing the tests. And yes…I snagged a quick selfie just because I felt like it. With as many tests and surgeries and procedures I have done…and will continue to do…I decided why not try to catch some of these fabulous moments with pictures?! Because won’t that be a great photo album for my kids some day?! Haha!😜

Anyway, once back in the room, I discussed my symptoms with the tech and as she continued to ask questions, I clarified that this was not a new injury but a follow up from back surgery. She seemed to accept that answer as she stopped talking and focused on getting me positioned in front of the machine….and then here it came.

When she went back to her booth and got the first glimpse of me from the “inside”, I obviously wasn’t what she expected as she kind of blurted out “wow, that is a lot of hardware you have.” So I went on to tell her that yes I had a lot of screws and rods due to one of the surgeries being a fusion and then the infamous quote…”you are so young though.” I just gave her a quick little smile and refrained from saying “if you think that’s bad you should do a scan of my chest.”

After she got the pictures needed, I went over to the doctor’s office to discuss the results. I was a little nervous due to the fact that I’ve had some pretty significant pain in my lower back again, but I can walk so obviously noting like I experienced before. 

The doctor came in and we went over my symptoms along with what I had been doing for activity. I finally asked how my X-ray looked and they said “your back looks beautiful.” They went on to say that  they were actually really surprised with how well everything looked due to how bad I had been, on top of me having so many other health issues that can be a huge barrier to normal healing time. 

They did remind me that the back surgery won’t make me 100% and the pain and numbness I am having could possibly be permanent but I am also just halfway through recovery so I am still staying positive that I have room for improvement. Regardless, doctors continued to be amazed with the progress I have made. No follow up for six months and at that time we will do another X-ray as it will be one full year since the surgeries.

Okay, I have to be honest here…and as silly as this is…I went out to my car and just started bawling! I seriously was so happy that you would’ve thought my husband just surprised me with a big trip or something!! Haha! But…I cannot remember the last time I had such an encouraging doctor’s appointment…and it was wonderful!!! 

Tim was pretty happy for me too, maybe more so because I really have minimal limitations. I’ve been walking on my treadmill and trying to get regular exercise so the doctor told me to keep doing what I’m doing! They of course did stress the importance of stopping any activity that causes a lot of pain or basically just don’t do anything dumb! Haha. 

Tim was worried I was pushing myself too hard on the treadmill but it doesn’t hurt my back when I walk and I have assured him that while I don’t have a lot of limitations now, I still have pain and will continue to pace myself! I will not do anything, especially out of stubbornness, that would risk putting me back in the hospital with all that pain!!

So, I would consider this an extremely great day!! Just six months ago I was crawling, not able to walk and in excruciating pain…and now I am healing better than doctors expected! Seriously, I cannot express with words just how happy I have been! Not to mention being extremely grateful that I am on the mend just in time for summer!! 

And speaking of summer…we had a beautiful, what felt like a spring day, the other day, so I’ve been enjoying the weather when I can and Asher even helped me trim down some of our raspberry bushes! 

I missed all of last spring and summer due to so many health problems so needless to say I have been overwhelmed with joy by how much I am already participating in!! I’m walking and driving and able to get outside! I am going to teacher meetings and seeing the kids perform in their school events and making it to church…I am experiencing life again!!!

Tim and I have had a lot of darkness in our lives, especially the last few months, but we always try to find something to be thankful for regardless. But it’s also nice to have days like today,  when it’s not so hard to see His goodness! πŸ’žπŸ’ž

Appreciate the little things…because those little things…are really the big things! #faith #family #love #health

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.