Short and Sour😜

Today I had my follow up appointment regarding my newly diagnosis of Raynaud phenomenon in Iowa City ….well, I thought that was the reason for seeing this vascular doctor today. Really though, everything seemed like a whirlwind and I’m not sure what’s going on.

Right away the vascular surgeon admitted to knowing nothing about Fibrosing Mediastinitis so I knew where this was going to lead to. It was like I didn’t even have a chance of him figuring things out for me. One comment of me saying I can walk about 20 minutes before my hands and feet get so numb and tingly that I have to stop walking, was enough for him to conclude I don’t need surgery and it’s not peripheral arterial disease??? Which, I never thought I did need surgery??? And I thought I had Raynaud phenomenon??? He immediately went on to say how I would benefit from seeing a different doctor….very few questions or discussion was had about the rest of my symptoms.

Even though I expect stuff like this to happen, because it happens a lot, I was still confused at how fast he was pushing me off to somebody else. I tried asking about the meds the ARNP in his office had offered to me the last time I was there but he said the meds probably wouldn’t be good to take because of my “other disease”. He said for instance, today my symptoms probably aren’t bad and I don’t want to be taking a lot of meds with my “other disease” because I might not have symptoms every day? But…isn’t the point of taking meds to stabilize and make every day symptom free?? Next thing, he mentioned me possibly having Vasculitis and referred me to a rheumatologist???

I was still confused by the referral and I know I shouldn’t have snipped but I did get in a little dig to the nurse that I should’ve just taken the meds when they offered them to me at my first visit.

My mother in law took me today due to the fact that Tim just started a new job and can’t get off work yet so I did try my best to behave! Haha. Honestly though, I’m not sure I will follow through with this referral and might just wait to talk with my regular lung and heart doctors next month. Because after today, I’m not sure what they think I’m dealing with now?? Way too many different diagnosis’ were thrown out at me today!?

But regardless of such a frustrating appointment…it was a beautiful day for a drive and I had some wonderful company between my mother in law and Asher! And wow…I’m pretty sure Asher wore himself out from talking the entire trip!😜💕

On the way home my mother in law had asked me what positives we could bring from this and oh boy…I instantly realized how Tim might feel when I’m trying to be optimistic with him while he’s working his 17 hour shifts haha. I joked with her to give me a few hours because I think it was pretty obvious as to how frustrated I was.

But as time went on and my heartrate began to settle, I was able to put things back into perspective. The positives out of this appointment?? Well, while I see my mother in law all the time, we were able to have some one on one and I got to learn a little more about who she is as a person and not just as a grandma! I got to spend the day with my sweet boy because pretty soon he will be in school so these little trips will be no more! And…I guess I should be thankful I don’t need surgery…for whatever reason the doctor had in mind before talking with me!

Thank you all for the prayers and encouraging messages you sent me today…I had a good laugh over some of them!!😂😂😂 God’s got this!!

Enjoy your weekend!

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And yet another season

Welcome 2018!! I know it’s been awhile since I posted and I apologize for that but I do appreciate all of the messages from those of you who have checked up on me!!

Things have been going pretty well and it has been a great last couple of months celebrating the holidays with lots of family time and then just getting back in to the routine of school after the long Christmas break!

As far as my health goes, I am doing okay!! I unfortunately have some new symptoms and I do go to the doctor next Tuesday! I am still getting a lot of cramping in my right leg, my feet and hands are always cold and I have been losing my hair!! I have to admit I panicked a bit when I realized what was going on but thankfully I’ve always had really thick hair so I have a lot to lose before I am bald but it is getting really thin haha. Plus, Tim said he has enough hair for both of us and he’s not joking! One day Tim came home and asked if I got a haircut so that is when we realized these new symptoms were becoming more noticeable to those who are around me all the time. I did talk to one of my doctors and she feels it is definitely vascular and related to my autoimmune illnesses. So next Tuesday I go to a new vascular doctor to discuss these symptoms as well as some treatment options for the new diagnosis of Raynaud Phenomena.

While that aspect has been discouraging, I am not letting it get me down and I am still pushing forward the best I can. I have been trying to eat healthier and be more consistent with my exercise! Oh, and the more I exercise the more weight I gain but whatever right?! I AM WALKING!!! And while I do not walk at a very fast pace or for long distances on my treadmill…I am walking every day!! And that is a huge improvement!

Then over the weekend I got caught up on some housework. And while I was cleaning my bathtub, I got overwhelmed with how far God has brought me in just over a year. This bathtub is the tub I was so embarrassed to let my aunts clean a year ago! My back pain had been so excruciating and I was not walking for months, then I had two back surgeries and was down even longer! My mom, my aunt and their cousins came to help me with the housework…and I was beyond grateful for them!💕 And now…I am physically able to clean the tub myself!! And yes…cleaning my bathroom truly is a blessing and I actually enjoyed being able to clean it!!

While celebrating the progress I have made and the fact that one long painful season is behind me, I began to think about my husband and how he is still in a really tough season.

This week he started a new full time job which means benefits and insurance!! This truly is an answer to our prayers and we are extremely grateful for this opportunity. I really do think this is going to be wonderful and I am very excited to see where God takes us with this!! However, if you ask me how excited we are, I will most likely hesitate and struggle with how to respond.

Yes, a HUGE answer to our prayers, yes, health insurance that we finally will not have to pay out of pocket for ourselves, and yes, some financial stability…all wonderful things!!! But, Tim will also continue to run our cattle operation so this means he will be going back to extremely long days between his new full time job (which now includes extreme overtime of seven days a week) and his full time job with cattle.

And I struggle with my response only because while I am excited for him to get this job, I am not the one who has to be putting in the 16 hour work days. That’s just crazy!! I figure it’s probably like him getting excited when I get new stents….the stents might help me for a little bit which I am truly grateful for but the stents do not cure me…so like my stents, we are basically outweighing the pros and cons of this job…and even though this job is a wonderful thing…it doesn’t change the fact of how much time he will be away from his family and how much exhaustion he is going to have to take…physically and mentally.

When I look at things from his view…I’m sure he feels as though he has been in this same hard season forever! Unlike me celebrating the fact that I’m healthy enough to clean my bathroom, I just don’t think Tim has gotten to that point of praising God for 16 hour work days…and that’s okay…at the moment. Between his brother passing, my health, his nonstop work….and now another full time job…on top of his already long days, that is a lot to deal with!!

Cattle are demanding enough especially in the snowy cold weather…which by the way…I learned never to remind my husband that our joy comes from Jesus and not our circumstances when he is just about to go work out in -30 degree weather!!😂😂😂 And now another full time job brings on even more work and less rest for him!

But, Tim is an amazing father who has sacrificed a lot of his time and sleep to do whatever it takes to provide for his family. He is hardworking and determined to take care of us. And he does not do all of this work out of greed, but because of necessity! But regardless of the crazy hours he has worked over the years, he has still made it to the kids’ events and been there for them.

So I am asking that you especially keep Tim in your prayers this next couple of weeks as he adjusts to some pretty long working hours. This job is definitely what we need and we are so thankful that he was able to get benefits, but while we figure out this transition, it’s going to be a challenge for him to work at his new job, keep up on the cows and help take care of things that only he can take care of at home.

And while I was thinking about all of the challenges Tim and I have faced as a couple between my health, his work, family sicknesses and death…our seasons just seem to be so extremely hard, but I have also discovered how each new season leads to another opportunity for us to experience and testify to God’s grace, mercy and never ending love…but I might wait a few weeks to point this out to Tim!😜

All For His Glory

Back to Iowa City I went, this time for a follow up on my heart and pulmonary artery stents! I will be honest and admit that I did not want to go. The last couple of appointments I have been to whether for my heart, SVC or lungs have pretty much resulted in the conclusion that I am as good as I am going to be. Not necessarily a bad thing but what’s the point of going to Iowa City every month if nothing can be done?

Yes, not a good way to be thinking and it’s been a long time since I have even considered skipping any Iowa City appointments!

So, while still in that negative mindset, I began texting my sister the night before to fill her in about how my symptoms were bad enough to be a bother to me but at the same time, they had not really gotten much worse since my last appointment. She was asking questions and agreeing with me on everything I said until I complained that my appointment would be a wasted trip.

And without hesitation, she shot back a text that said “but it puts the rest of our minds at ease”.

And wow did that text hit me hard! She was absolutely right and I realized just how negative…and selfish I had been!! A reminder that these appointments don’t just affect me, but my entire family and a lot of my friends!

Instead of being grateful that I have not had a significant decline in my health…I was complaining about having to go to an appointment and wasting my day to confirm that?! That would be the best news ever to hear there is no progression!

That text message changed my whole attitude and got me excited for the next day. Not much change would mean a quick visit with the doctor and no surprise tests scheduled that would keep us stuck there all day so maybe Tim and I could go shopping for a change afterwards!

Asher got to tag along again with us and the highlight for him was pushing buttons and riding in the elevator…

…and going up and down the escalator!

My cardiologist had moved offices so it wasn’t until we actually arrived that we realized his office was now directly across the hall from where Tim’s brother had passed away and I couldn’t help but mumble in frustration to God…”really? Like it’s not hard enough for Tim to keep coming here anyway?”

So that didn’t start things off too well with Tim but Asher was able to be a good distraction and he got dad to play some games on their devices while we sat in the waiting room…but that darn Christmas tree in the background is where Tim and I shared some heartbreaking moments over the loss of his brother…

Thankfully we didn’t have to wait for too long before I was called back to discuss my symptoms with the nurse and a med student.

Okay, for those of you who have gone through this…it can get quite tiring to repeat ourselves over and over to nurses, medical students, the doctors and more medical students so I have learned to make things even more interesting for those that I discuss my issues with! I totally appreciate all of them taking the time to listen to me but frankly, yes, my situation can seem gloomy and depressing so I let my personality shine through right away to give everyone an idea of what type of person they are dealing with! I want them to know I am happy regardless of what they have to say!! I don’t want them to be afraid to tell me the “bad” news! I want my team of nurses and doctors to know I am okay if they don’t have “good” news. Yes, my health is terrible, sure I am slowly dying…but we all are! Yes, I have some extreme pain and symptoms…but I am still able to laugh!

And today, even my husband had a “deer in the headlights” look at me when we were discussing my symptoms.

I was informing a medical student that I have been extremely tired with chest pressure the last few months, however, I didn’t really think it had gotten worse from the last time I went through the heart cath procedure. Tim also pointed out that I have been pretty swollen in the mornings, especially in my head and held out his hands to expand on how much bigger my face was.

And I really don’t know where and why this came to my mind but without skipping a beat I looked at them and said “he goes to bed with a 10 and wakes up with a 2”!

Noooo, that was not appropriate and NO, I shouldn’t have said it and NO, I probably shouldn’t blog it but the look on their faces was absolutely priceless…😂😂

That was pretty much the end of our conversation and then Tim was able to manage a “I can’t believe you said that” in between laughs before the doctor came in.

We reviewed the most recent scans I had done a few months ago and as expected, he didn’t think much had probably changed from my last heart cath since my symptoms have still been manageable! Stable is good…I will take that over progression!! Here is my left lung which is working at 100%…the dark shaded areas indicate a healthy lung with significant blood flow. I really am praising the Lord every day for the lung function in my left lung!!

And then, here is a current picture of my right lung…unfortunately the stents in my pulmonary arteries did not hold up as well as we had hoped for so basically as seen…the only blood flow in my right lung is in the lower lobe, therefore, very little lung function.

My doctor did say that in order to know exactly what was going on, as well as to measure my numbers for the arterial hypertension, that we could schedule another heart cath procedure where he would go through the groin again and then intervene if need be. However, the cardiologist feels that he has done all that he can do from his standpoint and the fact that the rest of my lung is so bad…he doesn’t feel going in would benefit me much regardless. I agreed and confirmed that I did not want to go through that procedure again….especially if it will not benefit me…the risks are simply not worth it to me at this time.

I of course did take into consideration that it’s also important to intervene if need be as soon as symptoms arise but my symptoms have not gotten significantly worse in my opinion, from the last cath I did, so I am fine with continuing to just monitor. Plus, he pointed out that some of the vessels were completely gone now so stenting isn’t even an option anymore!

He then made small talk with Asher throughout the appointment but with so many different people trying to carry on a conversation with him, Asher decided to shy away from everyone…but he still flashed that smile of his!💕

So that is my update. I do go back to Iowa City in a few weeks to discuss the numbness in my right leg and arm as well as the new diagnosis of Raynaud syndrome.

Again, I did not want to post these pictures in order to gain your sympathy, but instead, I just wanted to give a visual of what I am dealing with and talking about when I say my lung is functioning at less than 1/4. Life is definitely more challenging for me but yet so much more rewarding!! I have been given a deadline for all of my illnesses yet I continue to fight past the dreaded prognosis….and every day is a reminder of how blessed I am to be living another day with my kids and husband!

And because of the extremely painful symptoms, the never ending doctor appointments and the continued uncomfortable procedures and surgeries that will always be a part of my life…I have learned to trust in the Lord and not lean on my own understanding! I have outlived all of the prognosis’ I was given which only proves God is in ultimate control and is the only one who knows how many days I have left! He is with me and has blessed me more than I ever could have imagined!

Life is not easy but He never promised that it would be!!! What He did promise is that I would be healed some day when I enter His kingdom and I know this to be true! My circumstances and illnesses may be difficult and never ending now but my hope is in an eternity of being pain free and filled with a joy I can’t even begin to understand through and with Jesus Christ!

Long time since I had an appointment like this one!

I’m sure I will get some slack from my family on this one but I wasn’t in the mood to share until after I had some results!

So, Monday I went to see my diabetic doctor for a checkup and we got to discussing my symptoms again in regard to my most recent diagnosis of Raynaud syndrome. The more we talked the more concerned she became about different issues and possible stenting needed in my legs so she decided to refer me to a vascular specialist in Iowa City. I pointed out that I already had a cardiologist who was heart and vascular but she preferred I see a vascular doctor who doesn’t just specialize in the heart. Due to my symptoms, she felt I needed a doctor to check out my vessels and veins throughout the rest of my body, specifically for my legs and arms due to the fact that those areas continue to go numb and change colors quite often. I also have extreme painful cramping in my legs that have been keeping me up at night. She was concerned that I could have some blockage elsewhere.

And then Tuesday, a nurse called to tell me that they had gotten me in to see the specialist this Thursday!! I will admit, I got a little nervous as to how fast they got me in to see a specialist but at the same time, I also had a very strong feeling that the appointment would be kind of pointless. Just for the fact that so many of my issues are the result of my fm…and in order to fix these issues…we need to fix the problem that is causing them. And again, my fm cannot be fixed!

I had every intention of going alone and actually argued with Tim that he stay back to work but…I lost that argument! And I’m glad I did!! Asher got to come along too and experience a day in the life of traveling to Iowa City…starting with McD’s breakfast which he really enjoyed!!

We got to the hospital and I checked in for my tests. I was under the impression that I would be doing some type of ultrasound on my body to look at the vessels and veins that go into my legs and arms…but I was way wrong!!

Instead, they simply checked my blood pressure then proceeded to check pressures in my hands by putting a miniature little blood pressure cuff around each finger. Once that was over, I was done! The tech went and got the nurse who she was working under so that she could make sure everything looked good enough to send to the doctor…and this is when I got cranky…

As the nurse was looking at my results she asked me what type of symptoms I had been experiencing. Once I explained them to her she asked if I had Lupus.

I said no, that I had a rare disease and went in to explaining what fm is. Without skipping a beat she replied in an upbeat voice “awesome” and continued saying she only asked if I had lupus because they had learned in schooling that my symptoms often stem from lupus. I looked at her and was like “yeah, you’re not going to learn about me in any college course but yep…it’s pretty awesome that I have a rare disease crushing my organs and suffocating me from the inside”!!

It’s been a long time since I have gotten worked up at an appointment so when I walked out of the room I motioned Tim from across the room where he had been hanging out with Asher…

…and we headed upstairs to discuss the results with the new doctor I had yet to see. Unfortunately things didn’t get much better. But I am so thankful my husband saw through my stubbornness earlier in the week and came along with me despite me telling him not to!! I always feel like such an inconvenience and burden to him yet those are the times when I truly do need him the most. Him and Asher were able to help distract me and make me smile as we waited patiently to discuss the results!💕💕

While I had done testing just on my fingers and hands, the doctor immediately began asking me questions about my legs and feet. At this point I was extremely frustrated because it was very apparent that nobody really knew why I was here. She brought up the fact that I had “A” stent so when I corrected her that it was eight stents due to my rare disease that had also caused pulmonary arterial hypertension and SVC syndrome, the look on her face said it all and I knew this was game over! Haha!

I won’t go into all the details because it just seemed to be a big pointless mess of confusion. I was offered medications to try and treat some of my symptoms but some of the side effects from the medication were symptoms I already experience. Plus my regular team of doctors had already said medications would not work because we need to treat the underlying issues which is the fm…and that can’t be treated!!

I declined the medications and she set me up to see a different vascular doctor in eight weeks to possibly do a bunch of testing, basically a full body scan to make sure nothing else was going on…yet admitted the fm was probably the main culprit behind all of my symptoms.

So, you are probably asking, what did this appointment accomplish? Nothing! Absolutely nothing! While I always hold on to that hope that something will help me or be able to calm my symptoms, today was another day with answers I expected, yet answers that are always difficult to hear!

Nothing can be done. Suffer through the pain and pray for a better tomorrow! I will continue to use my home remedies in hopes of getting some temporary comfort and I have also been trying to do my treadmill as my body allows. I take breaks throughout the day and just continue to push through each day that I am blessed to live.

The thing is, I expected to hear what I heard today in regard to my health. But what frustrates me isn’t just the fact that nothing can be done to help me…it’s the fact that when the nurse replied “awesome” it was a clear indicator that she was not listening and had not paid any attention to a word I said…and with my condition…we cannot have doctors and nurses who are more focused about telling patients what they learned in college classes over listening and learning from their patients!!

I am scheduled to see all three of my specialists over the next six months…cardiology next month, SVC stents in February and pulmonary in April. All appointments will require testing so I am confident that my team of doctors will be able to provide some answers and do whatever they can in hopes to help me!

And as far as today goes…I got to spend the entire day with my husband…something that seems to be even more rare than my disease these days! Not the ideal date or the best of circumstances…but it never has been for us💕💕

November 13, 2016

I wrote this blog last year after Thanskgiving and had no intention of sharing it. However, while it was a day filled with so much sadness, it was also a day filled with joy and hope as I expressed my love for Jesus through baptism. I decided to share this exactly one year later just as I had written it back then without changing anything about it…

What an amazing day this was going to be. After 41 years (yikes I’m old!), on November 13th, I was excited to share with you a decision I had made…to show my dedication in following Jesus Christ through baptism!! November 13th is also my father in law’s birthday so I had even made some homemade ice cream for him to enjoy at the lunch we planned for afterwards. But plans can change fast and now you will know why it took so long for me to write about such an important event in my life.

Again, for those who don’t know my story, I grew up in a Lutheran home where I got “baptized” as a baby and was confirmed my freshman year and while I did accept Jesus as my personal savior when I was younger, I did not develop a meaningful relationship with Him until many years later.

My 20s were difficult on me, well, even in to my 30s…and I got lost in what I wanted…what I thought could bring me happiness. And while I was diagnosed with my rare disease at the age of 27, with doctors giving me no more than ten years to live, I did begin to reach out to God. I started going to church again but really, that was it. I was consistent in prayer but my prayers were always asking for God to change my situation…to make me feel physically better…to make this nightmare of bad health disappear…to give me what I thought I needed…selfish prayers really.

Tim and I got married and while I would like to say we had the true romance and that fabulous honeymoon phase, we didn’t. The struggles just got harder…life got harder. Tim and I were faced with so many challenges to the extreme shortly after our marriage with not knowing if we would be able to have any children together and an ectopic pregnancy that was physically and emotionally draining on me…then my health drastically changed for the worse…his extreme working hours…extreme financial struggles…and watching many of our loved ones facing challenges as well. There was absolutely nothing on this earth that could help me and while I had loved ones trying to support me, they couldn’t even begin to understand what I was going through with my health, or the strain of our life that was being put on Tim. I mean, everyone has health and marital struggles right?

And even some of my loved ones agreed with doctors and felt there was no hope for me. Absolutely nothing…or nobody could make me feel better about our situation. I was in a very dark place and I realized God was the only one I had left to depend on. Life was so difficult for us and if I was going to get through it I knew I needed to be an active participant in my relationship with Jesus because while church was great and made me feel refreshed on sunday…it wasn’t getting me through the week, let alone barely through the day!

Aaron, Tim’s brother that I have mentioned on occasion, was diagnosed with leukemia back in 2013 and what a difficult time that was for Tim, to say the least. In the midst of all of our marriage struggles Tim and I just couldn’t understand why life had to be so hard. I mean, I had just been hospitalized two months prior due to a blood clot in my chest so wasn’t that enough? Now his brother had cancer??? It was all just too much in such a short time and none of it seemed real!

And then just like that, within only a month after Aaron was diagnosed with cancer, Tim was back in the doctor’s office sitting with me, holding my hand, as I sat there crying and listening to doctors tell us that my disease was progressing quite rapidly, my lung was worse and now my heart was being affected as well. I was diagnosed with another rare disease called pulmonary arterial hypertension with a life expectancy anywhere from 3-5 years…this new illness now a result from my first rare disease of fm.

All doctors could promise was that they would TRY to address my symptoms as they arose while doing the least amount of damage to my body as possible. This was my only option?! Reality hit me hard that I was not going to get better…that this disease would still continue to attack my body and there was nothing anyone could do to stop it.

2013 is the year that I finally broke…but in my brokeness is where I found God’s mercy and grace.

Month after month I still prayed for God to cure me, to cure Aaron, to make life a little easier on my husband. While I continued to go to church and pray…

I also started digging more in to my bible and Tim and I joined a small group. We surrounded ourselves with other believers and as I read more and prayed more, I knew God was working my heart as I felt a new sense of peace being washed over me. I finally was starting to have a real relationship with Christ and seeing Him for who He is. I was finally starting to get it, not only from what I was hearing on Sundays in church but also from what I was reading in the bible. And that brought me comfort not only during the good times…but also during the bad times because in the next three years…things would only get worse…

I had been praying all wrong and I was only praising God when what I thought was good happened in our lives. I mean God did bless us with two more children when the odds of having anymore were highly against us, but it just seemed like everytime we took one step forward, something forcefully slammed us ten steps back. But God was there all along and working in us! I hadn’t been using my suffering to glorify Him by seeing and appreciating the true beauty in things…the true beauty in our Father and his unfailing love for us! God really was doing amazing things in my life and even though circumstances were getting harder…I had this overwhelming sense of calm as I started to focus on Jesus instead of my situation…and this is when I started thinking about baptism.

Aaron and I were once talking about how we were two very physically sick people yet we were still happy. And while we talked about our own situations and the ridiculous amount of junk we have both gone through, we also acknowledged how sad it was that so many people were looking for joy in the wrong places…like Aaron and I admitted doing before, and even in the midst of our sickness when we shift our focus from God to ourselves. Aaron made the comment that if people would just stop and actually look for God, they would find Him because He is always with us.

I was growing in my faith throughout all of my trials and knew that God only wants the best for us…even if that is through suffering…because there is good that God will bring from suffering…I truly trust Him in this, even though I might not see the goodness.

So Sunday November 13th I decided would be the day to get baptized.


My whole testimony was based on circumstances and how for so long my faith had really fluctuated in the outcome of my circumstances instead of my faith in God. A whole three minutes on me encouraging the congregation to trust the Lord in all things and to truly believe that no matter the outcome, have faith in God and who He says that He is. He is a God of love, kindness, mercy, grace and so much more. And I was able to share my testimony boldly because I am finally starting to understand who God is and I am confident that He is exactly who He claims to be. God is faithful and steadfast in His love for us no matter what bad…or good circumstance we are in! Yes our circumstances change but God doesn’t!!

And then the phone call came just three hours after I was baptized as we were all sitting around the table finishing up our meal…Aaron had passed away. My husband just lost his brother, only 39 years old.

Of course I cried because I was sad and I was angry but then guilt set in because not only my parents, but Tim’s father and sisters had come to my baptism, minus his mom who was with Aaron. If I wouldn’t have gotten baptized maybe his family would have been there with Aaron instead.

And then more guilt because I was the one who was sick, the one according to doctors who shouldn’t be here. Apparently Aaron had always been the healthy one up to three years ago when he was diagnosed with cancer…yet I was diagnosed with diabetes at age 17 and now had been fighting multiple rare illnesses for the last 14 years so why Aaron? This isn’t fair God!!!

And then it was like God took my line out of my testimony and smacked me right in the forehead…”no matter the outcome, my faith is in God and who He says that He is”. And comfort instantly consumed me. Aaron is with the Lord…what an amazing peace to know that!

Needless to say it has still been hard, and of course so much worse on my husband. How do we function with so much heartache? How do we go about living life with smiles and happiness? How do we do Sunday dinner without Aaron there cracking his jokes and making us all laugh, causing us to choke on our food?!…”No matter the outcome, my faith is in God and who He says that He is”.

Most of my tears are over Tim as I cannot begin to understand the grieving that he is going through. I can see the struggle and just a glimpse of how hard this must be for him. I knew Aaron for almost ten years through family gatherings and Sunday dinners. Once he was diagnosed with cancer, we began to visit and encourage each other more often through text messages because we were both “sick” and could relate to one another. But Tim had known him his whole life for 37 years…a true brother. Here are Aaron and Tim when they were younger…my hubby is the one who looks cranky…but still so cute!💞 😉

And then there’s also the selfish part of me that cries because I have seen my husband stop living and become angry and bitter and grieve over the loss of someone so close, so what if my health takes me next? And I cry because I know Tim thinks the same thing…in fact he’s even said that is one of his biggest fears.

“No matter the outcome, my faith is in God and who He says that He is”.

This is extremely heartbreaking to share but at the same time, we have to keep our eyes on Jesus. I wanted to share the happy news of being baptized because while I am ashamed to admit that I am a sinner, I can declare that God sent His son Jesus to die on the cross for me! I am grateful to know that He has accepted my forgiveness and I am doing the best I can to live and love for Jesus.

Life is hard and it’s okay to grieve. A “new normal” is going to take a long time to find and adjust to especially with the holidays coming up. Thanksgiving was hard and to be honest Tim and I didn’t want to do anything…but some pretty awesome friends invited us over and were patient with us as we decided last minute to join them for lunch on Thanksgiving Day. A couple hours out of the house did us some good and it was nice to see my husband’s gorgeous smile again.

There is definitely sadness and a piece of our lives will forever be missed but Aaron is no longer suffering…he’s done with the tests and needles and never ending guessing games of what chemo to try next. He has a new body and is probably running around in his undies as Tim told the kids, making all of the angels blush! Because one thing was for sure..the cancer did not take away Aaron’s sense of humor!😂💕💕

I can now look back and see that while the progression of my illness has given me the opportunity to grow in my faith…over the last three years it also gave Tim and me the opportunity to see Aaron more often…usually at the hospital when I had appointments. But Tim also stopped over for coffee on occasion to get some brother time in as well…and that meant some great in debth conversations with Aaron that we will have to cherish forever.

Aaron loved his family which was his main focus…and he also had his faith so while I continued to pray that healing miracle for him, Aaron knew God was the one in ultimate control and he was accepting of how his ending might turn out…which is really his beginning because of his personal relationship with Jesus Christ.

Aaron will now always be a special part of such an important day in my life….and, as hard as it is, if you think about it though, the whole day is such a representation of  what believing in Jesus Christ as our personal savior is really all about…

Now is a time for grieving and trying to get back to living which is hard no matter how much faith you have. It pains me to see Tim hurting so deeply but I continue to pray that my amazing husband and his family can find a little more peace and healing with every day that passes knowing that Aaron is with the Lord…and some day they will all be reunited. And if Aaron were here I would tell him that’s a “win win.” 💞💞💞

“No matter the outcome, my faith is in God and who He says that He is”.

Rare Disease on the Mighty

Please take some time to read the attached article at the bottom of this blog because I couldn’t have said it any better myself. I am very thankful for all of my friends and family who have supported me through the years with so many procedures, not such encouraging news and just some down right low moments in my life. The prayers and little messages just to say hi or to see how I am doing, truly make a world of difference!! Thanks to all of you who are still standing by me!!💕💕💕       

But…to my husband…the man who is supposed to get my best yet is the first to get my worst on bad days, or after seemingly defeated doctor appointments at the time….thank you for looking past those not so great moments. I don’t get the choice but you do so thank you for CHOOSING to live rare with me!! 

https://themighty.com/2017/05/rare-disease-supporters/?utm_source=Facebook&utm_medium=RareDisease_Page

Add it to my list…

Hello hello! I have been getting a lot of messages about how my appointment in Iowa City went on Friday so finally after a busy weekend, and busy start to the week…I can provide an update!

Well, it’s Iowa City so we know to expect the worst and hope for the best…or whatever that saying is! As far as my pulmonary testing…aka…breathing tests…they have slightly gotten worse. Not a surprise though because I have had some pretty intense symptoms. However, good news is that my oxygen actually went up a point during my six minute walk so I am praising the Lord that no oxygen is needed for me at this time! 

I have also been getting puffy in the mornings and the chest pressure and shortness of breath are slowly working their way back to making daily life a little more challenging for me so I decided to bring those issues up while I was there as well.

The doctor first assured me that he had been keeping a close eye on a certain area of masses in my chest and informed me that he had looked over my scans from a few months ago when I had my SVC stents opened up and not much looked to have changed. Very good news!! He also pointed out that a lot of these symptoms I’ve continued to have are the result of my SVC syndrome as the doctors were not able to open up my stents last time as far as they typically have been able to in the past. Blah!

The doctor and I then reviewed my most recent symptoms in regard to when I exercise. Okay people…I walked 40-50 minutes a day for five days…and gained almost 10 pounds…in FIVE days!!! Also when walking, my right foot and hands would start to go numb and then my hands would turn all kinds of crazy colors from white to blue or red! Naturally I stopped walking but then I would notice my hands did the same thing just from walking from my house to the car…not a terribly long distance. I assumed it was lack of oxygen but again, I had passed the six minute walk so the doctor was pretty confident my oxygen was okay.

And this is when I was diagnosed with a new disease, Raynaud phenomenon, a rare blood vessels disease. 



Of course I would have to be diagnosed with the less common and more severe type right? Haha! The result from my autoimmune disease…again, no surprise.

The doctor simply encouraged me to wear gloves and to keep warm as much as possible…even wearing gloves on warmer days when I don’t think I need them. 

The doctor and I continued to discuss how the progression of my fm thankfully seems to be slow for now. And as far as my symptoms, unfortunately I just need to figure out how to deal with them because doctors are starting to be limited with how much they can do…which brought us back to my walking. He asked me if I had stopped walking because of my concerns or because I physically couldn’t do it anymore and I replied…”I stopped walking because I didn’t want to gain another 10 pounds”!! Haha!

The fact of the matter is…I have already learned how to deal with my symptoms…I push myself. A regular day of getting the kids up and off to school, simple meals or light housekeeping…is harder than anyone will ever know. Everything I do requires more effort than it appears, but I do it. I’m stubborn and don’t want this disease to overtake me, but I’ve also matured…just a little😉…so I know when I need to stop or slow  down because I am at my limit.

So when the doctor asked “do you think you’ll push yourself to get back to walking?”…

You bet I will!!! I was back on the trail the next day!! 

I push myself through life every day so I can push myself through some exercise! I just need to pace myself and continue to listen to my body! I need to challenge my right lung in order to build its capacity and try not to lose what little function I have left, all while being careful not to put too much strain on my left lung and heart to cause even more damage by overworking them because I’m compensating for my bad lung. It’s a fine line but I know it’s doable…I mean I’ve been doing it for 15 years so I can do it another 35 years right?!

While another diagnosis is definitely not what I want and can be very frustrating because it’s just one more way for my own body to attack me, if the only medical recommendation it requires for now is that I wear gloves and stay warm…I’ll take it. Now that I’m thinking though…I should’ve told him to write a prescription for me to move south during the Iowa winter months!

So that’s my update. Basically…I’m tired and puffy! Haha! And honestly, I thought I was handling things pretty well until I sat down to write this blog and found myself bawling! But, I almost never cry for myself anymore. The Lord has proven himself to be faithful over and over to me so I know He has a purpose for allowing yet another medical issue to consume my already broken body. I trust Him and know that my healing will come because He already promised that to me! 

I really am okay!! But…I cry for my husband. Tim wasn’t able to come with me to this appointment so I knew he would be waiting eagerly for my call to hear the outcome of my day. He has rarely missed any of my appointments but with the crazy hectic life we live, he has had to miss a few recently and I know he hates it! Especially because I have called him crying each time to discuss the progression. This time though, I was happy to say I didn’t cry when I called him. While my breathing was worse and I had a new diagnosis, I focused on the fact that my oxygen was up. I was also encouraged that I have a doctor who is supporting me when it comes to pushing myself! Of course I still need to be careful but…I don’t know, it’s hard to explain but having a doctor who believes I can still improve even if it’s my own doing without medical intervention…and seems so hopeful right along with me…makes a huge difference!!

And while I consider this to be a decent appointment, I cry because I will never be able to make that phone call to my husband and tell him I’m cured. I will always have to come back for an appointment and sometimes that makes me feel like I am disappointing Tim…even though I can’t help my illness…I still feel like I’m letting him down when I have to tell him my disease has progressed. 

I cry for my children. Asher has been to more hospitals and doctors with me than any five year old should have to be….just last week at a diabetic appointment…

And then to the hospital the next day for labs…

I cry because my kids have a sick mom and while I know God is using me for something, to my kids…I am still sick. I cry for the times when I’m too tired to play or too sick to go to one of their activities. Although I am extremely grateful to be able to say that I have not missed a single activity or event this year!! I have seen Skye perform at every event for colorguard!! 

I cry because I will never be able to come home from a doctor’s appointment and tell my family…mommy is all better. 

But, I am happy! I love my life and I have been blessed with an amazing family!! I will never get better but I can pray and fight like crazy to maintain the health that I have now!! And again, I know that Jesus died on the cross for me and someday when I come face to face with Him, I will be healed. I truly know this!! 

So I cry for my family because I do not want to be the reason they lose faith. I don’t want them to turn hard and bitter or angry and cold just because I am sick and have had to “go through so much”. 

And I cry for the rest of my family and friends because I know so many of you feel helpless and don’t know how to respond.

I will tell you this though…please never tell me you are sorry because there is nothing to be sorry for!! I am able to enjoy and appreciate the little things that so many take for granted!! I can praise the Lord for appointments when there is no progression and I can also praise the Lord when I receive what seems like discouraging news at the time.

Friday I was told my breathing tests had gotten worse and I was diagnosed with a new illness. Saturday I was out walking then Sunday my family and I went for a drive to the apple orchard…


Monday, the kids didn’t have school so Leah woke up bright and early to help me do chores so daddy could sleep in a little before going to his other job…Then when we got home from chores, I took the kids for a walk on the bike trail…


Tuesday we celebrated our youngest baby turning 5 years old!!

And the rest of the week is going to be filled with orchestra concerts, dance clinics and colorguard performances!! 

So see?! I have had a blessed and fun filled week!! The new diagnosis and progression of my illness might prevent me from doing some things…but it won’t keep me from living in the moment and appreciating what I can do! And the only reason I am able to see sunshine through so much stinking rain is because of Jesus!

When you’re diagnosed with FM…you get a whole other family…

One thing about writing my book and attempting to keep up on my blog is that people have reached out to me because they stumbled across my name when researching fibrosing mediastinitis. And while I have had quite a few private messages over the last couple of years from people all over the world either diagnosed with fm, or have a loved one diagnosed…some of the most recent messages have left me feeling sad and frustrated that there are still doctors providing no hope for those newly diagnosed with this disease.  

And my heart aches because I have been there and understand how devastating the initial diagnosis can be!! I started researching fm again, trying to compile a blog filled with encouraging educational materials and current studies…but (not really to my surprise) there is still limited information and definitely not much encouraging news when trying to research this illness.

For those of you who are angry, scared, discouraged, isolated and overwhelmed by your new diagnosis…we have all been there!! Almost all of us diagnosed with fibrosing mediastinitis…have had our breath knocked out of us as we got our diagnosis. We have sat in that chair face to face with one doctor or 10 doctors who looked at us with sympathy in their eyes trying to explain what this disease is, worse yet, struggled to say anything positive about the prognosis and treatments that simply resulted in…”I’m sorry…this is a terrible disease, there is nothing more we can do. I’m sorry.”

So, I am doing something else that will maybe provide some encouragement to those of you who just had the life as you know it, pulled out from underneath your feet. I went to the best resource I know on the internet…my fm support group!! And I asked them to share a little bit of their story because a lot of them have been given little information as well! While living with this disease definitely is not easy and has made everyday life more challenging, so many of us are still fighting!!

I copied the stories as written so these are personal opinions and experiences in regard to fm…and due to the pure honesty from this great group of people I have gotten to know throughout the years…some stories may be difficult to read. BUT, they also show strength, determination, perseverance, appreciation and hope! This group will always be there to listen, educate, love, pray and support!! And if anyone wants to join the group or if one particular story hits closer to home for you let me know and I can get you connected. Any of these people would love to reach out and help in any way that they can!

I have attached quite a few stories but I do hope you will take the time to read all of them as this is how we raise awareness!! And a special thank you to my wonderful fm family for taking the time to comment as well as letting me share your stories!💕


Penny– I was diagnosed with FM on September 25, 2006. Doctors gave me 7 years. I was told that I needed to be getting my affairs in order and that they had done all that they could do. Today marks 11 years! 🙏🏼🙌🏻🙏🏼

Monica– I was diagnosed in march of 2015 I took sporonox and prednisone. I had the masses intertwined in the arteries of my heart and it was inoperable. They told me it didn’t look good. These medications shrunk the masses in my chest from fm . Mine come from histoplasmosis from inhalation of bat feces from attic. I am cured now. The medications worked. I lost some right lung function but no longer require oxygen.

Brenda– I was diagnosed in 1997. At first they thought I had cancer. It was like a very bad dream. When they assumed the diagnosis as Histo related FM, I took my Doc’s advice and kept on living as normal a life as possible. It hasn’t been easy but I am still here!!!!! I get 10% oxygen from left lung and 90% from right lung. I just had a CT Scan and can post it if anyone is interested. The original Doc. who diagnosed it did not want to ever “open me up” or go in to see, he said he didn’t want to let any oxygen into my chest (which might disturb and help the FM grow). My new Doc wanted to go in (he said he wanted to rule out cancer lol). Since 1997 my growth which has occluded my left pulmonary artery has tripled. My heart has slightly shifted. My right PA is clear, but I do have some calcification in the bottom of right lung. They are now watching and I get regular CT scans. It has been really hard for me most of the time living with the horrible disease, but I live each day the best that I can, and count all my blessings. Love to you all

Trish– I got my actual correct diagnosis in August 2016. I unfortunately had the wrong diagnosis for 15 years. I lost all function in my right lung, left lung is good! This disease is scary and mind-boggling but also let’s you know how tough you are!!!!

Tara– I had my first issues and thoracotomy in 2007 and the surgeon told my husband that he had no idea what was going on and I would probably be dead in a few weeks. I wasn’t correctly diagnosed for several years later. My current doctors, who are amazing, do not give me any timeframes. I’ve lost all function in my left lung but do pretty well unless I overdo it.

Elvin– I was diagnosed in October of 2014 and like Monica mine is around my arteries of my heart and aorta. I have been treated with prednisone and Rituximab and also I have been placed five stents in my arteries of my heart. The treatment shrunk the mass a little and now it’s just stable. Right now I’m able to exercise (cardio) daily for at least 30 minutes and keeps me going with my battle of this disease.

Dana– My husband was diagnosed in oct 2014. His left lung doesn’t have much function left but his right is clear. Dr Lloyd told him that he should be fine as long as it doesn’t progress to the right. So no time frame. He said it was a rare slim chance it would spread over to the right lung but that it could. So far so good!

Kimberli– I first started feeling sick in 2010. The doctors that I was being sent to thought I had lymphoma. I wasn’t diagnosed with FM until April of this year. I have some calcification in my lungs and numerous CT scans. I’ve had stent placement and feel so much better. I haven’t been started on any medication as of yet and haven’t been given a prognosis.
Danielle– My first mass was found 7 years ago, September 16, 2010, I was then tested for cancer and a number of other things, it was an abnormally large unknown mass at this point and from this point on I had to undergo ct scans with contrast every three months, 2012 I had gotten fed up with being a “test tube “ being watched for change and learning purposes and also 4 biopsy surgeries later, so I called and got an appointment at Mayo Clinic in Rochester, mn, waited two months for the appt and finally October of 2012 I got in and the doctor diagnosed me with fm, and told me to just live my life I was fine, (looking back I am unsure how much he really knew about fm) July 2013 I called the blood donation center asking if I could donate blood while having fm, much to my surprise they said “absolutely not, this is a LIFE THREATENING DISEASE” well this was a game changer, so immediately I called the University of minnesota, I learned there was in fact a doctor there that had specialized in this disease and had an appointment available 3 months out, I took it and got in October 2013 another biopsy surgery and a bunch more blood tests and other tests later, we found 1 more abnormally large mass, and 3 other small masses, totaling in 5 masses of various sizes. Two that press in my aortic arch and trachea, the other 3 in random places. I went in for short check ups every 6 months with minimal changes until October 2015when it was decided that the progress has gone “dormant “ and we will just do a check up every October. Now this all being said through all of this I have not been back in just about 2 years because I am afraid of getting bad news, maybe I am dumb for this, I don’t know, I have been told there is no fixing fm, so if it is not fixable why get the bad news vs just being able to live my life with a constant smile and loving every second of it? I have since gotten a will and life insurance all squared away so my son will be okay. Long term effects I have developed
-I cannot run around , climb stairs or hills, like a normal person without getting light headed, dizzy and extremely winded, this has gotten slowly worse and worse over the year.                                                                       – joint problems (specialist told me this can be a side effect of the disease) not sure if it’s true or not, but this also has gotten worse.    -random spells of chest pain more frequent as time goes                                                           – 2 autoimmune diseases that is believed to branch off FM

There is my FM story 🙂 Officially diagnosed October of 2012 and never given a you have ___ years to live…..Instead I have learned to appreciate everything as it comes, good or bad and I don’t let things bring me down or dwell on them… I live every day like it’s my last and wouldn’t have it any other way

                                                                              

Melissa– Started showing symptoms around 2003 had all kinds of test done still nothing. Changed primary Dr and the one I have now sent me to Vanderbilt. Finally got a diagnosis in 2006. After having 8 stents in my SVC still going just have to keep watch on my symptoms.                                    

                                                                    

Tiffany– No one ever gave me an expiration date. If they would have I would’ve said🖕. 

                                                                      

Holly– Diagnosed FM in 1990’s, but symptoms of SVC syndrome due to post histo began in 1974. My pediatrician even questioned FM in her hospital report, but back then no one did CT Scans. Around 1991, I had a car accident and after a chest xray I was referred to a pulmonologist who ordered the CT Scan which answered my mystery veins and symptoms. No one gave me time limits. I was 12 when I was exposed (chicken coop/farm) and 14 when symptoms began. The only thing my pragmatic thoracic surgeon said to me was, “Live your life to the fullest and as best you can.” And, “I am more worried about the calcification involving your esophagus, because one day it will erode and you will bleed out.” I am now almost 57 years old. I live and adjust to symptoms and believe my time is completely in God’s Hands. All in all, it has been a 45 year battle. And I’ve had seven children!

                                                                 

Suzanne– Mass found in 2008. SVC fully blocked by then. Like a lot here, cancer had to be ruled out. Drs afraid to open chest due to triggering it to grow. FM dx came in 2012. Due to position of mass I cannot be stented. Mass is growing but slowly. Gets a little closer to the right pulmonary artery every year. Last year it was close to touching, so this year who knows. No “timeframe” given as it’s such an unstable and unpredictable disease. It could stay slow or flare up from what I’m told.

                                                                      

Carol– I was diagnosed in September of 08 I went to Jefferson Hospital and they did get the diagnosis right but sent me to Mayo Clinic for a second opinion and if Mayo could do anything for me. It has been very difficult . Mayo Clinic said I would have about 7 years and said don’t let anyone do surgery or I would be dead in a year, seems like if you do anything it is a dangerous operation . My FM just went active within the last two months , I had a bad fall that broke my 4th rib and I have more opacities in my lung which were not there before. Feeling fragile but everyone says how wonderful I look,,,,,”Just Great” nobody thinks I am sick. My right lung does not function I have Superior vena cava obstruction my SVC does not function at all. Well love you all, be well and yes don’t go overboard. You will hurt yourself. In extreme pain as well.

Teresa– Over 10 years for me. Luckily mine has not advanced since diagnosis. A Dr said I had a moderate case. Daily pain that I live with but not severe. Right lung is mostly non-functional and I get short of breathe easily but no oxygen use. Heart works harder to compensate but no heart problems.
                                                                             

Kj– I was diagnosed in 2010 and kept having drs tell me there was nothing more. I finally went to Mayo in Rochester MN in 2013 and they have been helping me since. I have Dr Carmona Pequira and Dr Megan Dulohary. Both wonderful doctors. I have a stent put in and then my lung respected by them

                                                                         

Persi– I was diagnosed in 1984 with FM at the age of 21, they didn’t really know a lot back then about FM so couldn’t really give me a prognosis just that there was no cure ……if u have any questions feel free to message me 🙂

                                                                

Christina– I was diagnosed in October of 2016 after being hospitalized for multiple pulmonary embolisms. The cough I was experiencing didn’t get better after being treated with blood thinners for my PE. Further testing revealed a mass in my right lung and because of a very persistent pulmonary specialist, Dr. Wittmer, he diagnosed me and sent me to Dr. Baker at the University of Iowa hospital for a second opinion. They have a tumor board there, which consists of multiple surgeons, and they are studying my case as I get more scans, which was every 3 months. I go back in October for another scan. No lung function lost yet….fingers crossed!

                                                               

Elisabeth– I was diagnosed in April Of 2015. They felt I most likely had it for 10 years at that point. Initially I was told I had cancer due to the large mass around my carotid artery. Biopsies proved it to be Fm. I had fairly severe SVC syndrome. I have also lost function of my top right lobe of my lung. They will try to catch it as it goes into the middle Lobe and stent, so I can keep function.This month marks 2 years since I received my stents. They have made all the difference in the worlds for me. I am extremely active with weight lifting and lots of cardio. I refuse to go down easy:) I do get short of breath easy, but have learned to just go with it. Dr Loyd told me that due to my age and the progression and it only being in the top of my lung so far, that I should have a normal life expectancy. But time will tell. Until then I just keep living!

                                                                       

Terry– I was diagnosed with FM, in May of 2011. I have a completely block SVC, the left upper pulmonary vein is gone. Only 20 percent of my left lung still works. And I have fibrosis in several organs. They gave me less than 18 months. But I’m still here.:-)


Cindy-I was diagnosed with FM in 2014 at Mayo in Jax. I was originally misdiagnosed with Wegner’s Granulomatosis in 1972 which can also be in the lungs and is autoimmune. I could see the calcifications on Chest Xray as far back as 2000 but was told that was normal. In 2013 I had a bronchoscopy where the doc tried to stretch my bronch. What happened was scar tissue formed and along came the calcification almost immediately. I could barely breathe for well over six months and it took 3 months to get O2. I saw a rheumy that didn’t think I had Wegener’s and suggested I go to a teaching hospital. I went to Mayo in Jax about 3 months after the bronch. They ran all the usual tests and told me I had FM. Dr. Loyd confirmed it within a couple of months. That’s when I learned there wasn’t much you could do for it. The bronch and subsequent calcification of the right bronch caused loss of function of my lower and mid right lung. I’m still on O2 because the shortness of breath is still with me and exertion like walking shoots my pulse to about 115 where resting is now 80-85. I’m in relatively decent health but have diabetes and high blood pressure. I feel fairly well most of the time but do tire easily. I’ve just gone into remission with major depressive disorder with the help of medication. So I’ve basically had this since 1972. I’m now 65 so I should continue on for as long as the good Lord wants me here. Because FM grows on scar tissue I will NEVER have another bronch or lung surgery. I feel blessed to be where I am. 🙂                
                                                                        

Erin– I was officially diagnosed with “Fibrosing Mediastinitis with multiple pulmonary obstructions” at Mayo last September after about 4 years of being sick with no solid answers. I had severe recurrent lung infections requiring multiple hospitalizations, strong IV antibiotics and prednisone (My Dr S in Spfd worked hard to keep me chugging along), severe persistent asthma (uncontrolled), coughing blood, lots of pain and breathing issues and low oxygen levels. I had no blood flow from left upper lobe to heart. They recommended a lobectomy since it had progressed so far and had so many collateral veins (stents were not an option for me). Did lobectomy via thoracotomy at Mayo in under 2 months of diagnosis. Removed upper left lobe and 9 lynphnodes. They never really talked about life expectancy and I didn’t really ask. I do have other spots in other lobes, but Dr D and Dr P at Mayo believe those spots are dormant right now. I hope and pray they stay that way. I now only have to go once a year for scans unless I have specific symptoms.


Nita-Diagnosed in 1988, at the age of 35, I was told to go home & get my affairs in order, because most people die before they are 40. The surgeon who discovered my disease (during an attempt to bypass the right pulmonary artery) had only seen one case of FM/MY ever. I contacted the top ten medical centers in the nation for a referral, & they recommended James E. Loud, M.D., at VUMC, Nashville, TN as the leading authority. I saw Dr. Loyd in the fall of 1988, & it changed my life. He assured me that although this is a life threatening disease, it isn’t necessarily a death sentence. I learned he had patients who had survived & thrived decades after diagnosis. Now, at 64, I am thankful to be a 29 year survivor Although diagnosed in 1988, Dr. Loyd suspects the problems I usually started more than a decade before that, as I had symptoms for years, & it takes several years for the disease to progress. My disease has remained stable for the most part, for the past 10-15 years. The damage that was done cannot be reversed, but I am alive! Every birthday is a celebration of life. Even the chest pain & deep, constant & sometimes disabling pain behind the right scapula is a reminder that I am a survivor. I only have to see Dr. Loyd every 5 years now, unless there are new symptoms. I last saw him a year ago.

Kimberly-I was diagnosed in 2004. I was never given a time limit and I never wanted one. I will go on living life like it is. FM kicks my butt some days but as long as I get up everyday I’m going to keep doing me. I’ve been on oxygen since 2009 and lasiks n aspirin for 2 yrs. Have been giving 2 treatments of rutaximib n it has helped. I only have my lower left lobe left.I have stents placed in my left lung and that’s pretty much it.
                                                                       

Yvette– I was diagnosed in December 2013. Prognosis was 6 months. It will be 4 years this December. God is the only one that knows how long we have. Enjoy every day! ❤️ 

So there you have it. These are just a few of the amazing people in my fm group! They are full of fight and strength and each of their stories provide great comfort to me knowing I am not in this alone! They truly can relate to what I am going through!

Yes, we still have extremely difficult days and in fact I will be going back to Iowa City next week to evaluate some continued symptoms I just can’t seem to shake. Life is definitely harder than it used to be with this disease, but at the same time…life is so much more beautiful💕

Always find something in every day to smile about! And if today you are struggling…maybe this will make you laugh. I couldn’t resist sharing due to the two conditions mentioned!! I seriously crack up over this every time I read it…maybe I’m tired!! I did make sure my hubby was okay with me posting this but he really didn’t get it anyway!😜

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!😂



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!🙃

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 weekend😉💕💕💕

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!😉

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!!