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!😉

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!😂😍


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…


 

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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!😉

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!”😉💞 


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!😉 Enjoy your night and appreciate the little things!💞

“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…

https://m.youtube.com/watch?v=ZHOBo7_S8Uo&feature=share

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.💞

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…

https://waverlygrace.org/sermons/

I spy with my little eyes something not fun 😜

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!😉 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. 😉

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! 💞

“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! 💞💞

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