Challenging but successful!

Friday I had my procedure and once we got to Iowa City, I told Tim I did not feel too confident because not one single nurse from my team was working…all new people! With something so rare, I can’t help but get nervous when someone new climbs on board but they all did great (minus a few tries and issues with getting my IV in…but when isn’t that an issue!) and they all had fun personalities! So began another date day with my gorgeous hubby…yeah, best we can do with hospital selfies…we were both so thrilled to be there!πŸ˜‚

However, when I got back to the operating room, Ryan, one of the original techs from my team who has always prepped me, was there. Before I could say anything about being happy to see a familiar face, he went on to say that all of his coworkers are new so he was just talking about me and filling them in on how him and I have been having these little “rendezvous’s” ever since he started working at the hospital! Haha! 

He is quite the character and while his name wasn’t actually written…he was one of the techs described in my book who always made me feel comfortable and joked around to distract me from what was to come. This time, however, he took me off guard and said “I just want to thank you for writing your book”.

He went on to say that his wife read my book and finally got what his job was all about. He said because of my book she was able to get a better picture of what he does and how important his job really is. He thanked me again and I told him, no, I was the one who needs to thank him and all of the techs and nurses and doctors who put up with and help me!! But then the sedation meds kicked in and I don’t remember the rest of our conversation!πŸ™ƒ

Two of my stents were almost all the way closed so they did have to do angioplasty and ballooning to open them. I of course resulted in wearing an oxygen mask again and they said the procedure was a little more challenging this time so they weren’t able to open the stents all the way up. They  did get them back open up to about 75% so praying that is enough to relieve some of my symptoms! I crashed pretty hard though and recovered for an hour before I was released.

I am happy to say that I did not get sick on the way home and was even able to finish off the date night with Tim by swinging through the drive thru at Culver’s for a little something to eat. 

The weekend went pretty well although I am still pretty sore and tired so I have been laying low and doing bare minimum! I was able to take the bandages off and before I could get my incisions covered back up with regular bandaids, kids caught a glimpse of my arms and as Asher said, it “freaked” them out!😬 Actually, this doesn’t look too bad compared to other times…

Thank you for all of your help with the kids as well as blessing us with some meals and especially for the prayers! I am so grateful to be surrounded by such thoughtful, loving, caring and praying friends and family! And a special verse that brought me tremendous comfort throughout surgery day as well as the weekendπŸ˜‰πŸ’•πŸ’•πŸ’•


Why do you have so many nails in your back mommy?!

I forgot that I had to get an X-ray for my upcoming back appointment today so running last minute to get scans done last week meant that Asher and Leah got to tag along! They are at the age where they can both sit and behave now anyway so I figured while I was getting a scan they could sit back in the waiting room where I got changed into scrubs. 

Well, the nurses decided that the kids could actually just come in to the exam room and stand by them as they took the pictures. I don’t think the nurses planned to see so much hardware and I think Leah and Asher were pretty amazed as well. When we walked out of the room Leah’s eyes were real big as she asked why I had so many “nails” in me. 

So then today was the one year follow up from my second back surgery and I am happy to say I am finally officially released!! I don’t have to go back!! This means one less doctor for me to have to follow up with!! 

I do still have back pain on occasion and my right foot has a little bit of a numbing sensation, but compared to where I was at a year ago…this is an appointment worth celebrating!! The doctor stated again today that I was in a very “bad, bad situation” and we knew most likely my right leg/foot would never be the same. She reminded me of how bad I was and how little movement I had one year ago which had been concerning to them and even made them question how much healing would actually happen! Although I have some numbing, my strength has come back quite a bit and everyone is amazed with how far I have come!

As for my fm, I did end up going in last Thursday for a scan as I have had some pretty intense symptoms that won’t let up. Extreme fatigue is one of them but then I have also been throwing up blood and getting the infamous head pressure. 

My scans did reveal that my stents indeed are narrowing and possibly closed so I will be going back to Iowa City at the end of this week for a venogram with potential angioplasty and ballooning to open them back up. My doctor followed up by saying “usually you are seeing me within six months so this time you lasted a little longer” umm it’s been seven months since I had to get all six SVC stents opened up. Haha! I like his sense of humor and hey, I did last a month longer so I can’t complain. However, after he opens them up Friday I’m going to shoot for them to stay open at least a year!πŸ˜‰

With that being said, I thankfully don’t have too much else to report. This past weekend we were able to have one more family day out with all four of our kids before school begins and the chaos of activity schedules pick up!! 

We started off at Texas Roadhouse for lunch…

Followed by some go cart races…

And some miniature golf!

It wasn’t much but it was something different and we all had a great time…AND go figure it was Leah and Asher who got the hole in ones!! Haha! I also forgot how competitive I am!! Sorry for all the digs I got in Tim just because you were killin us!😬 

So that’s about it for now! My symptoms have definitely made life a little more challenging again these last couple of months but they haven’t gotten to the point of keeping me down! I know all will go as planned on Friday and I will make sure to update you on how my procedure goes!!

The manly man behind the beard…

Yes, Tim still has his beard. No, he hasn’t cut his hair. I don’t know when he will cut his hair or shave…

Those are my typical responses to the questions that come up in just about every conversation with family and friends. While the majority of you know why Tim went against his annual rule of shaving his beard after three consecutive days of 70 degree spring weather, for those of you who might not know, let me fill you in….

On November 13, 2016, Tim lost a big part of his life…his older and only brother Aaron passed away after battling leukemia for over three years. This would turn “no shave November” into “no shave at all”. The day of Aaron’s funeral, the weather was beautiful and sunny but the following days, it turned cold and windy and the sun had disappeared, a good indicator that winter had settled in. 

As the months went on, Tim’s beard really took off and it grew in thicker and longer. By the time spring rolled around, I was patiently waiting for him to shave that thing off!!🀣

He continued to struggle over the loss of his brother so in order to somehow find comfort in Aaron’s death, Tim got back in to  reading the Bible and his devotions. He came across this verse…
Judges 16:17 “If my head is shaved, then my strength will leave me, and I shall become weak and be like any other man”…and he figured that was the perfect verse haha. He decided he would see how long he could go without shaving or getting his haircut as a way to honor his brother. I did point out to Tim that if Aaron knew he was doing this he would probably make fun of him, tell him he was an idiot and looked like a homeless man. Tim agreed. 😊

As his beard continued to grow, Tim started to receive several compliments and his beard became the topic of daily conversation.

Everywhere he went, even if it was just to the gas station, guys were stopping him to admire his beard!!! And if they didn’t stop, they made comments to him in passing….at least this is what Tim was saying, until I witnessed it myself! 

For instance, awhile back Tim and I got invited to a charity dinner. I asked Tim if he was going to shave for something a little more formal…I didn’t tell him to shave because when he is growing his beard for his brother…well, I didn’t feel it’s my place to tell him otherwise. Tim said no he was not going to shave and I will admit a part of me was saying to myself “dang it….c’mon!!”

So, we got dressed up and headed to the dinner. Tim and I joked that they would probably call security once they saw him with such a long beard, but NO! The FIRST thing that happens when the man opens the door for us….the guy looked at Tim and said “man I wish I could grow a beard like that!” 

I couldn’t even make eye contact with Tim but once we were out of the man’s earshot I turned to him as we were both already laughing! I quietly yelled to him “are you kidding me?” Tim simply replied “told ya so babe” and gave me a wink with his cocky head nod!πŸ˜‚πŸ˜‚

I figured okay, whatever, one guy said something but I know Tim is exaggerating about how many people really compliment his beard.

Yet once again, the next time I was out with him…we were walking along the sidewalk and this guy walks past and says “good beard game man”. Seriously?! After that I began paying attention and realized Tim was right!!! Everywhere we went he was getting compliments!!! And it was guaranteed that just about every guy that talked to him said they wished they could grow a beard like him. Are you kidding me?!πŸ˜‚ And these guys are genuine!!! They’re not just saying it to mock him or to humor him!!!

I will say that Tim has put a lot of time and effort in to his beard and exactly 8 months 12 days, since Aaron passed away…is how long it has been since Tim shaved or had a haircut. 

For the most part πŸ˜‰, I have not discouraged him in any way to shave because of the reason he was growing it. I love him for being so passionate when it comes to his family…bearded or not.

I also know that it will be extremely difficult when he does decide to shave because him and Aaron were infamous for shaving weird designs or seeing who could do the most outrageous thing when they shaved their beards. And now when Tim decides to shave, whatever crazy style he comes up with, this time we will not be showing the pictures to Aaron for him to come up with a better design than Tim. 

Tim has wanted to explain to others why he has long hair and hasn’t shaved but he says his “beard chats” are always so positive and upbeat that he doesn’t want to bring the conversation down by discussing the reason behind it. And even though the reason is heart wrenching, I think the compliments and ridiculous amount of conversation it stirs up…has been an encouragement to Tim and helped him through some of his tougher days. 
He has a big heart for those that he loves and I admire him for that. 

And not to mention the wink he gives me when he comes home from chores!! 

Haha…His sense of humor still shines through that wild and massive beard!!!

So there you have it. Tim could shave before I post this or…oh wait…what’s this?! What is going on??

Is it really so?

It doesn’t seem real! He’s shaving!!! These are for you Aaron…and while the beard is gone, nothing can shave away the amazing memories we have of you. You will never be forgotten!

Not to mention… I’m kind of excited to have my hubby back…and the long hair isn’t too bad either!πŸ’•πŸ˜πŸ˜˜

Catch daddy in a moment of weakness and run with it!

No dogs he said…

I’m not a dog person he said…

Absolutely no dog in the house he said…

Isn’t she the sweetest thing ever?? Tim and I have been back and forth about getting a dog for quite some time. Of course I play the “kid” card…every kid needs a puppy right? Especially when we live on a farm! And then when he is on board, I have usually changed my mind because I am thinking I really don’t need anything else to deal with.

Finally we both agreed…at the same time…that maybe a dog would be good!  But of course we couldn’t settle on the same type of dog! I like the big dogs while Tim originally said if we got any dog it would be a smaller outdoor dog. 

Then a few of the kids were begging for an inside dog so the debate began between inside verses outside. Tim didn’t necessarily say no, but simply said he didn’t want to get stuck cleaning up the mess.

After a lot of researching for a dog that would fit our family, I of course only found the big dogs. The Great Pyrenees or the Bernese mountain dog is what I really began to have interest in. They are both great for cattle and amazing with children…but they are huge dogs so Tim said no…the first 10 times I brought them up to him!☺️

And then I see this sweet little Great Pyrenees for sale and really wanted her!! 

I showed Tim and he hesitantly agreed that she was a pretty cute dog! He also began to research them and told me to get it if I wanted. Wait! What?!

I obviously had expected him to say no just like every other time but this time he didn’t! I started researching even more to make sure this breed of dog would in fact be a good match for us. 

We attempted to set up a time to go meet the puppies but we would be driving 2 1/2 hours one way to go meet them…and Tim definitely did not have the time this weekend since he was working all of his jobs. I handled it well and accepted the fact that we would just have to wait until next week and if the dogs were still available then we would go.

But then Friday morning I received this text from Tim…

And that’s all it took…me and the three kids were out the door within the hour road tripping to go meet some puppies!!

She handled the drive home very well!πŸ˜‰

While she has been inside the house since we got her, we haven’t completely decided that she will be an indoor dog. If anything, she will stay inside until Tim can get the outside all ready for her with an invisible fence and dog house. But she sure is making herself comfy until then and the kids are loving so much on her…

Skyler has been out of town at her cousins so she was definitely surprised when she came home and asked me how I convinced dad to allow a puppy inside?!! I told her this cute dog did not need any covincing!

And even better… the puppy only got up once during the night for me to take her outside AND she has done awesome with only one accident in the house during the 36 hours we’ve had her!! Which that one little accident was due to me losing track of time!  

Now the final decision is what to name her.😬 We should hopefully have it picked out within the next day or so!! 

So…that’s what we’ve been up to on top of Tim’s 16 hour days! I mean, regardless of how busy we might be…we will make time for this sweet little puppy because kids have to grow up with a dog when we live on a farm right?! 

One year…

Yesterday marked the one year anniversary of my first back surgery! I guess one thing good about posting on Facebook is the fact that we always have exact dates as to when events take place in our lives. Just reading Tim’s update made me cringe as the pain I had experienced for so long back then…is hard to forget…

While this surgery gave me some relief, it would be short lived as I believe in the following couple of weeks I would begin to have even worse back pain than before which would lead to my second back surgery resulting in several rods and screws being placed in my back. But hey, when Facebook pops up that fun filled memory I’ll make sure to share!😜

But again, I will always remember the tremendous pain I endured for so long…physical therapy and cortisone injections could not even touch it.

And one year later, here I am, helping my husband with cow chores…it’s not a glamous job… 

Especially when on blood thinners…

And unlike last year, I was able to take the kids to their swim lessons this time…

As well as to the swimming pool and parks…

We even hit a round of golf balls for the first time as a family!

And with Tim getting another full time job, my garden was the last thing on his list of things to do so I took it upon myself to do the entire garden this year! Even tilling and putting up a little fence to keep the critters away!! I was able to get him to water it a few times tho!

And the produce is turning out to be delicious!!

With me finally feeling halfway decent, I know Tim wishes he could be taking me on vacation, especially since it’s been several years now that we went anywhere. But compared to where I was at this time last year…I am living a vacation now!! 

Walks, swimming pools, parks, fireworks, parades and just having fun outside…to many of you that probably doesn’t sound like anything too exciting but to someone who couldn’t even walk to the bathroom, let alone go outside the entire summer last year…these little things are everything!

And while my fm symptoms have begun to flare up and slow me down again, they’re not stopping me from being outside enjoying the time with my kids…and getting a date night in here and there with my hubby! #nohehasntshaved

Life has been difficult and last year was even harder with me not being able to walk or do anything. I spent the entire summer down in the basement, using a foot brace and walker to get back and forth to the bathroom…going to the bathroom or doing my physical therapy exercises were the extent of my activity. Tim was left to do it all. It almost broke me physically and emotionally…and it almost broke our marriage…but we kept praying and looking to our family and friends for support…and we got through it! 

And while we both know that will not be the last time I need to rely 110% on Tim, he knows that I would do the same for him if the tables were turned. I am so extremely grateful that Tim has chosen to stick by me through it all and after the last year we had…I know he’s not going anywhere and is with me until death us do part! 

I am so thankful for how far the Lord has brought me this past year but no matter how bad the circumstances…you can still choose joy, and remember…there is always something to smile about!

I’ll Take It As A Good Thing…

Three months since I’ve been in Iowa City and it was a long day, but that’s to be expected…especially when we have a couple of appointments. First off for some of you who might have known…Nathan had his eye surgery today. The surgery went well, however, when he returned back to his room he continued to experience a lot of eye pain and his blood pressure dropped so recovery took a little longer than planned. Thankfully he eventually became more comfortable and was ready for discharge!

I also had a heart appointment today and it was uneventful…which is a good thing…for the most part! My cardiologist discussed the condition of my lungs and did not feel that was the cause for my recent symptoms. He did suggest we could do a scan to recheck my heart but expressed a lot more concern over the amount of radiation I have been exposed to from all of the scans I have received, especially over the last four years due to the progression of my illness. He also suggested we could do another heart cath to get a more accurate picture instead of a scan but of course that is more intense and I’m really not up to it since I just did one in December. Not to mention that procedure is very uncomfortable and carries plenty of risks as well.

While my symptoms are a little more frequent now, they are manageable so we decided to hold off on any further testing and just continue to monitor. 

He recommended I follow up with my SVC doctor and if that doctor has any concerns then they might go ahead with a scan. I was also encouraged to call him if my symptoms become worse. 

The only downfall to waiting is that monitoring the progression through Ct and lung scans are key for this illness. I am now at the point though where doctors are concerned about all of the radiation exposure causing different health issues so they do not want to do any type of lung or heart scan unless my symptoms indicate a significant change in my fm. 

Yet by not doing the scan I risk the fm progressing too far to the point where they possibly might not be able to intervene because it’s too late. A constant battle we face with rare illnesses…trying to figure out which option will do the least amount of damage to my body…and sometimes that’s a sucky thing to have to choose.

But regardless, today I will consider this appointment a good report! I mean yes, my symptoms have slowly been progressing again but like I said before, as long as I take frequent breaks and rest throughout the day, then I am able to manage. I will rejoice in the fact that while I still have bad days, they are not the worst of my bad days! 

I am attaching one of my favorite songs as I rarely can get through it without crying because of the overwhelming comfort the words bring me. Our worship band just happened to sing it in church on Sunday which gave me assurance that all would go well today…not necessarily because of good test results, but because of the fact that He has brought me so far and I am never alone!

He’s making diamonds…

Today I got up early to help out with cow chores. While the cattle operation is running fairly slow right now compared to how many cows Tim typically has, it was still enough to make me exhausted by the time I got home. 

I was greeted at the door with screaming kids, well, by Asher screaming and the other kids just saying “hey” as they went about their morning. As I was helping Leah and Asher with their breakfast the heart palpitations kicked in, to the point that I found myself gasping for air, followed by some coughing. This is an annoying symptom nobody can figure out how to stop and thankfully, for the most part, they aren’t always this severe.

I told Skyler I was going to go rest for a few minutes and an hour later she woke me up to let me know she was heading out to go tubing with her friends for the day. I could hear the kids playing downstairs so I took my time getting out of bed. Things seem to be working in our favor right now so I told myself “of course, now my fm is going to harass me”.

I was having a pretty rough day with my symptoms so this naturally led to some guilt and negative self talk about the stress and challenges I bring on as being a sick wife. Because of my sickness, I can no longer carry a full time job, therefore, losing our family health insurance and my life insurance, not to mention the extra income. Because of my sickness, my husband is working another job on top of our cattle operation to bring in extra money…to pay for insurance that we now have to pay out of pocket. Because of my sickness my husband can’t rely on me to help with anything bc we just never know how healthy I am going to wake up and be able to function for the day…oh and the thoughts could go on and on. Not to mention all of the insecurities of being a woman! How can my husband love me when I am always sick? How can he find me attractive when my bad days seem to be more often resulting in extreme fatigue and going to bed when the kids do…making no time for him!

I started to become angry and sadly…I became angry at Tim. I started justifying my insecurities by thinking if he didn’t expect so much from me then I wouldn’t push myself so hard which only results in me being sick. He has no clue how I feel and no idea how hard it is to go through life with one lung and a bad heart! I was in a self pity mode and decided I had better pray and get my devotion in if I was going to get through the rest of the day!! 

Tim was going to be home soon for lunch so I had to calm myself down before I lashed out on him the minute he walked in the door…and all because of my negative self esteem!!

Lunch time rolls around and Tim came home for a quick ham and cheese sandwich that I had prepared for him. He was filling me in on how his morning had gone and randomly expressed some verbal emotional gushy stuff to me…and he is not one to do that very often haha. 

And of course the tears just started to flow!! I’m pretty sure from here on out…Tim will debate if he should ever come home for lunch again haha! Here I had let my insecurities about being sick make me doubt my ability as a wife…and yet Tim had been at work all morning thinking the complete opposite…appreciating how lucky he was to have me as his wife! 

To hear your spouse say how much they love you on some of your worst days is the best medicine!! Those three minutes of him expressing how blessed he felt to have me in his life was exactly what I needed to hear and God’s timing was right once again! 

Tim is tough and can be a downright stinker yet it is almost always because of the fact that he can’t stand to see his loved ones hurting. He hates the fact that he can’t “fix” what is wrong and make things all better! But the fact that he randomly proclaimed his love for me…in that moment…did make things better! I was able to praise the Lord for showing His grace though Tim…and I was able to get on with my day! 

And that little push was what I needed! I instantly became overwhelmed by the little things that I have been able to accomplish! 

And I reflected on how far the Lord has brought me over the past year! 

At this time last year, I was recovering from an unsuccessful surgery in regard to my endometriosis. I was pretty discouraged knowing that yet once again, this health issue would be another “learn to live with the pain” scenario and since the surgery didn’t work, I still had a lot of physical discomfort…but then only a couple of weeks later, I began experiencing horrific back pain. The pain was tremendous, even with the slightest amount of movement and my right leg and foot had become so numb that I could barely move it well enough to walk, which the pain had already prevented me from walking anyway. The only time I even attempted to move from the floor was if I had to go to the bathroom, I would crawl on my hands and knees to get to my destination…all while flinching in extreme pain. And as you all know, this resulted in not one, but two back surgeries within a few weeks apart due to the severity of damage in my lower back.

For some reason, the other day was an emotional day for me and everything I did, I found myself tearing up from overwhelming joy. Like I said in the last blog, circumstances have kept us even more busy this last few months and I am so thankful that my body has been behaving…for the most part, minus a bad day here and there. I am able to help my husband out…I am actually able to follow through with what needs to be done. And that is huge for me! 

Of course I am doing it at my pace, a slower pace than Tim probably prefers, but I’m doing it! And I take naps throughout the day!πŸ˜‰

Everything I did that day just brought me so much happiness…so what did I do?? 

Well, I ran to the bank, I did the morning cow chores, even washed a few buckets, started some laundry, emptied and filled the dishwasher and worked out in the yard. As I was mowing I looked over to check on Asher…and I couldn’t stop smiling! Top half dressed in winter clothes while his bottom half in summer clothes! Hey, in his defense, Iowa weather does change fast!πŸ˜‚πŸ˜

I also had the cutest 10 minute conversation with him about how God is making us into diamonds…a song we heard on the radio while running errands…which apparently he was paying closer attention to than I thought…

The gratitude continued as I made the family dinner, was able to drive Leah to dance and picked up a few groceries. Once everyone was home from all of the nightly activities, we spent the remainder of the evening outside. As I watched Nathan and Tim put up fence in between his peas…

that sense of peace and joy rushed over me yet again! 

I did just about everything for the garden this year! I tilled it, I planted the seeds in rows, which may be a little crooked but hey, the first time I ever did it by myself. Haha! I even put up a little fence around the entire garden to keep the bunnies out…and last year, I had never even made it outside due to all of my health issues.

So, while the other day was “just another day,” it was a day that I was healthy enough to live it. My back and leg pain were not significant enough to prevent me from carrying in the groceries or driving Leah to dance, my heart was strong enough to keep up with the activities I did and while I still took frequent breaks due to the shortness of breathe…I was able to continue on with my day! 

With my illnesses, I know all of my health issues can strike at anytime, and a good day today does not guarantee a good day tomorrow, in fact, my really good days almost guarantees tougher days to come…the previous days had proved that!

 So, if I wake up again tomorrow consumed with pain and nasty symptoms that keep me in bed all day, while my circumstances change daily, sometimes even by the minute, the only thing that does not and will not change is God’s love for me. And while I am extremely thankful for such a healthy day, I will continue to praise Him in all circumstances. God is good!!

While I can, I will

Sorry I’ve been missing in action lately! I wasn’t able to access a lot of my apps or Internet so I finally got a new phone and will do a brief catch-up for you!

Things have been nonstop this past month and I am so grateful that I have been able to participate in life as much as I have been!

We have had a few changes in some personal circumstances which has made Tim extremely busy, even more so than he already has been, and this has also led to more responsibilities on my part…meaning, I really need to pay attention to my symptoms so that I don’t push myself too hard because the last thing we need right now is for either one of us to be out of commission!

Not to mention, kids are wrapping up the school year so we have had end of the year band concerts and orchestra programs on top of all the other daily household stuff. I also volunteered with Skyler and the colorguard team to help out at a color run race which was definitely a lot of fun…personally I just enjoyed the fact that I got to spend time with my teenage daughter!image

We have celebrated birthdays and did a spur of the moment weekend trip to the Omaha Zoo…the first little family getaway in about three years. The weather was perfect, it wasn’t too busy and we all had a lot of fun…



Asher also started tball and how happy my heart has been watching him play!!

By the time all of these activities are done, swim lessons, colorguard events, gymnastics and new dance classes will begin! 

My fm symptoms are still present but not severe enough to keep me down for days. I have finally accepted the fact that if I want to stay involved in things, I need to pace myself and rest along the way! I try very hard not to get frustrated when the fatigue or heart palpitations and shortness of breathe kicks in, which is still several times throughout the day, but I do recognize that is the way my body is telling me I’m getting to my limit so it’s time for me to slow down. 

And, as long as I listen to my body and rest when symptoms arise instead of pushing them off a little while longer, then I tend to be able to keep on with my day.

I also started my new insulin pump with the sensor and I don’t know what to think. It sure is a lot of stuff to keep track of…

The first night I wanted to throw it out the window because it was constantly beeping and vibrating. I was starting to think it might even explode!! It even woke Tim up the first couple of nights because the sensor has to get used to my body so to speak. I do ,however, definitely like the fact that I can just look down at my pump and read what my blood sugar is instead of constantly poking my finger to check.

But, since it is new, I have had a lot of inconsistent readings which has led to too much insulin and I have dropped down into the 30s…which again results in loud beeping and vibrating as the warning flashes across my screen…

My pump will beep to warn me that I am getting low but then I drop so fast that it really doesn’t do me much good. The consistent lows have resulted in me eating at 2 o’clock in the morning to get my blood sugar up and then I feel sick the next day from eating in the middle of the night and from being so low. A not so fun cycle to be in!

Thankfully I am getting the pump figured out and my sensor is stabilizing so the lows are becoming less frequent. I have also changed my settings to alert me sooner when it appears as my sugars are going to drop and then I can grab a snack before they get into the dangerous range.

So, that is what we have been up to the last month or so. I have enjoyed my few months of no doctor appointments but now the follow ups will start to come in June and July. I am not going to stress about what my symptoms could be an indicator of or what news the follow ups might bring.

Instead, I am going to continue to do what I can do while I am able! I am going to savor every day filled with sweet little moments whether it’s playing with the kids and seeing the beautiful smiles on their faces as they talk about their day or simply being able to be outside experiencing the warmth of the sun as I help Tim with yard work. Appreciate the little things…

On the mend

Well, my eyes seem to have recovered, for the most part, from the past couple of eye surgeries. My vision is okay but doesn’t seem to be as strong in my left eye…and once in awhile I get an extremely sharp, quick and painful sensation in my left eye as well. I am trying to keep track of when and how often it occurs so that I can discuss it with my doctor at my follow up appointment.

And then to add to that fun…my infamous cough is back, which triggered Tim to tell me I should stop blogging about how well I am doing…because then things go downhill for me! Oh if only I had the ability to control things by what I write in my blogs!πŸ˜‰

A few days later after the encouraging news of improved breathing test results, I was going up the stairs and found myself resting on our bed before proceeding with why I had gone up there in the first place. Dang it!! I got short of breath and had to sit down! Doing what I do best, I ignored it and pushed on through with my day. 

But the shortness of breath seemed to become more noticeable throughout the following days and my stamina on the treadmill also seemed to be dwindling. And then just like that, the nasty cough was keeping me up at night.

But the cough went away, I was back to doing two miles on my treadmill and I was going up and down the stairs like “normal.”

Yet as fast as the coughing left, even more symptoms came back full force. 

I found myself with the severe coughing again. The tightness in my chest was tremendous, to the point that laying down was not an option. My shirt felt like it was suffocating me and even my hair just laying across my neck aggitated me.

Down to the couch I went and I was able to find some relief by switching into one of Tim’s t-shirts to help me feel less restricted then I also propped up three pillows on the couch to elevate my head. The stabbing sharp pain wasn’t giving up in my chest so I continued to reposition myself several times from my back but the pain was excruciating and the heart palpitations became stronger. I alternated from side to side but the weight simply from resting my arm on my side caused tremendous pain and pressure in my chest making it impossible to breathe. 

I finally resulted to sitting slightly upright on the couch against all of the pillows and this seemed to alleviate a little of the pain and pressure…

Needless to say not much sleep was had.

The next morning I felt like death and Leah had developed a cough as well so I made an appointment for myself and figured I would also take her with me just to make sure she didn’t need antibiotics. Once to the doctor’s office, the masks came on. 

Leah did not like the mask and said she was sad and we need to pray for the people who have to wear them all the time.😞

All turned out fine, in fact Leah had pretty much stopped coughing by the time we went to the doctor… but I was given antibiotics in hopes that whatever this was, would not turn to pneumonia.

And then again, just like that, Leah and I were good the rest of the day! Maybe we were over it!

Since I was doing well I continued my weeks as scheduled with school stuff, my women’s bible study and activities I had been invited to but eventually my cough was back full force…persistent, consistent and not letting up. The pain was so intense again and the pressure had been so bad that I questioned if this was something the kids had brought home from school because Leah had gotten sick again along with Nathan…or perhaps it was all due to my fm?

I have continued to keep an eye on my body and I have had some swelling in my neck, an indicator that my stents could be closed…or maybe just swollen lymphnodes from the cough? While the coughing was sporadic throughout the first couple of weeks, it then became more forceful and intense causing me to get sick…which then was starting to put a lot of pressure on my back as well. 

I was trying extremely hard to stay positive and be thankful that I was still able to walk…obviously that back surgery junk really traumatized me haha. 

But finally…the two kids got better and seem to be over the worst of it…and I think I am too!! The cough still seems to be lingering but it usually does! I am back to doing my nebulizer treatments which has seemed to help me as well.

So after a few weeks of being down, I have been cleaning house and getting caught back up on things…and I am loving it!! It’s so funny because I have been telling people I’m living again and basically all I am doing is cleaning and cooking…but I am ecstatic to be doing so! Haha! A lot of times people will offer assistance to us but while I am actually ABLE to do stuff…don’t be offended if I say no because I’m simply appreciating the fact that I CAN clean my house or cook a meal! 

Before, I used to get so frustrated with a messy house and grumble the famous line “if I don’t do it nobody else will.” Don’t get me wrong, I still find myself mumbling that but then I remember how I could barely get up to go to the bathroom and how I had to use a brace and walker at this time last year…and that haunting thought motivates me to hop up and clean with such a happiness in my heart and a sense of accomplishment. Yes, that’s kind of sad haha.

Not to mention, I have also been able to run our errands and stay on top of appointments. I took Skyler to get her braces off and how excited was she!?! What a beautiful smile…

And her first food request…an apple!

Then today Asher had his preschool checkup and we got a great report! According to his doctor, Asher is “healthy and strong and rockin the long hair!”πŸ˜‰πŸ’ž 

He did have to get a finger poke to check for lead and he didn’t cry, but he wasn’t sure what to think of it!

I am beyond grateful that God has shown me mercy and fortunately my really bad days have been on days I didn’t have too many big plans. Tim and I have a couple of things coming up this week that we have really been looking forward to and I am so thankful that as of now it looks as though I will be healthy enough to keep my commitment and attend the events!! 

It has definitely been a challenging few weeks with health but so rewarding as well!

Off to finish some laundry before bed!πŸ˜‰ Enjoy your night and appreciate the little things!πŸ’ž

“In Times Like These”

This week was the start of a new local chronically ill support group (In Times Like These)! A lady and her husband from a nearby town started this group because she was diagnosed with mast cell activation syndrome, basically she is allergic to life! I met her at the rare disease day event they held back in February and her story humbled me, inspired me yet also provided comfort because again while we all might have different illnesses, sitting face to face with someone who really can relate to what I am going through is one of the biggest supports you can have! 

The chronically ill support group streamed live because a lot of times, those of us with illnesses, get sick and can’t make it to events. If you can’t watch it broadcasted live then everyone has the opportunity to watch it at their own leisure. The pastor gave some background information about how the church and this group got started. Peg and her husband Chad also shared a little bit of their story and the sad truth is that Tim and I could relate with so much of what they said. 

For instance, in the link attached you will hear Chad discuss a pretty scary and serious situation one time while him and his wife were on his motorcycle. Tim and I have had several types of those incidents as well, especially when it comes to my fm. But, in all the commotion with what my fm has been doing to my heart and lungs, I sometimes forget how serious my diabetes can be as well.

With so many health issues, they tend to trigger other symptoms for each issue. Meaning, while my diabetes affects my fm, my fm symptoms can affect my diabetes and blood sugars. My body is constantly fighting itself trying to figure out how to balance out from one sickness to the other…and a lot of times that is not possible, no matter how hard I try.

Chad’s story he shared reminded me of the time not too long ago when my sugars dropped down in to the 20s. For those of you who have diabetes, you know where this is going…for those of you who don’t know, my blood sugars should never go below 80 for dangerous reasons. I began blacking out..and of all places…while I was helping Tim move our big 1200 pound pregnant mama cows!! I remember my legs buckling and I let out a bloodcurdling scream because I was so out of it, yet aware just enough to know something really bad was about to happen. I remember Tim yelling at Leah “go get mommy a Mountain Dew”…as he used his arm and leg to hold me up against the gate ALL while trying to keep the big cows from running out of the pen with his other arm and the rest of his body. 

Next thing I know, I am in Tim’s arms with Mountain Dew running down my chin as he explained to me that I had started convulsing…and he had poured pop down my throat. By the way…even though the Mountain Dew probably saved my life…don’t do that if you don’t have to haha. I went to the doctor the next day and got a “glucagon” which is the proper and safest way to treat life threatening low blood sugars.

This is a story I never shared because first of all, to this day Tim hates the thought of that incident and says that was probably one of the scariest things he has ever experienced. I felt embarrassed, angry and guilty for my blood sugars getting so low. I hated myself for putting so much fear into my baby girl as well as the horrified look I remember splattered across my husband’s face as he tried to keep me from falling and cracking my head open on the cement….not to mention possibly being stomped on by cows!

Thankfully I have never had many issues with my diabetes like that before but this is our reality…with just one of several of my illnesses! Tim has also seen me with low oxygen and low blood pressure, to the point of me being hard to wake up from procedures, he has seen doctors hesitate when trying to give us encouraging news in the worst situations. My husband has seen me almost die on a few different occasions and every appointment we go to is always one more appointment closer to them finally saying nothing else can be done for me.

This is life living with chronic illnesses!! These are the daily “challenges” we face. 

And, as much as I HATE how all of my illnesses affects my family too, I HAVE faith that the Lord is working in all of this!! Because on days like I just explained, it is hard for me to find any value as a wife and a mother who is always sick…but thankfully that is not where our value comes from and Peg and Chad explained it so well with the dollar bill demonstration.

I am doing a women’s study on Esther, a book in the bible, and so many things have jumped out at me since starting this series but one saying in particular seemed to be the only line on the page of my workbook one day…”the ending to each story is happy (if we accept Jesus as our personal savior), but before the happy ending is realized, much grief occurs.” 

How comforting that is to me! I am in God’s hands and I am confident of who He says He is. Yes there is pain and we will all endure suffering, there is no getting around it! But someday all of our sorrows will be gone, our bodies will be healed and we will have an eternity with Jesus filled with joy and love like we cannot even begin to imagine! 

Peg and Chad seem to use their sense of humor, but more importantly, their faith to help them push through and survive each day that passes…something else Tim and I can relate to.

Sadly life changing circumstances can happen to anyone and it will happen in the blink of an eye….because that’s how we ended up in our situation! So, always rejoice in Jesus, love your family, appreciate your health and enjoy the little things in life! 

Please take the time to watch this link…it is on standby and starts right at the 9 minute mark…