Quick update

I finally made it back to Iowa City today for a follow up on my SVC stents! Due to the fact that they were narrowing four months ago and the fact that I have also been having some pretty intense symptoms recently, including that infamous cough…I had no doubt in my mind that I would be having angioplasty today.

I was right! The right stents in my SVC were 80% occluded while the stents in the left side of my SVC were 40% occluded…or blocked. I am very thankful that the doctors were able to open them back up!! This is great news!

When doing angioplasty and ballooning for my SVC stents, the doctors are able to go through my upper arms. If you ever look close enough, you would see a bunch of tiny little white scars throughout my upper arms from all of the times that I have had this procedure done. Unfortunately, I think we had some issues going on today! Here is my left arm after the procedure which doesn’t look too bad…

And then the right side…which is the most challenging side of my body due to having the most damage from the fm. Not sure what happened but obviously there was a struggle and I did feel quite a bit of pain throughout the procedure…

Needless to say…this is what my good report looks like!! Haha! I was able to get out of the hospital fairly quick and I did not get sick on the way home!

However, as the night goes on I am starting to feel downright awful. I’m experiencing bouts of nausea as well as coughing quite a bit along with some chest pressure and a headache. They did a lot of messing around in my chest today so I am really starting to feel it. Not to mention my arms burn with any little movement I make.

Anyway, that’s all I’ve got. I just wanted to provide a quick update since we have been getting a lot of messages tonight and my guess is, I will be even more sore and tired tomorrow so I will not be up to visiting or doing much of anything! I have a few rough days of recovery ahead of me but after that, I am looking forward to healing fast and seeing how much better I will feel now that my stents are open!

Thank you for all of your prayers and messages today! It means a lot knowing that we are surrounded by great family and friends who are willing to support us in anyway possible!💕

And now off to bed!


Graduation Day

Graduation day came with so many crazy emotions because…

18 years ago this beautiful little girl came into my life and turned my world completely upside down. Her sassy attitude started immediately with such high demands!

I had to run the vacuum in her bedroom to get her to sleep or take her for late night car rides to calm her down…even buckling her into her car seat and setting her on top of the dryer while it was running to keep her from crying!

At the age of two, Skye was so full of energy and just beginning to discover life…

But that was when I was diagnosed with my illness and given no more than 10 years to live. I remember like it was yesterday when I had my major surgery, a thoracotomy, that caused such tremendous pain. I remember sitting on the couch crying with every breath because the pain was too much to bear…just from breathing….yet crying even harder because my little girl came running to jump in my lap on so many occasions and my mom had to stop her every time.

As she got older…Skyler had a few health scares of her own her. She developed seizures and for some reason tremendous guilt overwhelmed me. Was this somehow my fault? Had I already failed this precious little girl as a mother?

Thankfully Skyler outgrew the seizures by the age of 7, so one day while partaking in our daily routine of her riding bike while I ran along next to her, crazy symptoms attacked me with a vengeance, preventing me from going any further. The disappointment on Skye’s face as we turned around to head back home will always be in the back of my mind. I will also never forget the fear inside me wondering if I WOULD make it back home.

From that day on, our lives would be consumed with tests and doctor appointments only to be told over and over and over again that I was dying and my priority needed to be that Skyler would be taken care of after I was gone. Doctors could not help me nor provide any glimpse of hope. I was going to be another statistic to this disease.

And at the graduation ceremony while I watched my little girl walk across that stage to get her diploma, my heart was so full of pride! She did it!!! She graduated from high school! One part of her story coming to an end and now on to new beginnings!

I was there to see it!!

And to freak her out by sneaking some kisses..

Of course my mind did kind of wander off as I stared at her sitting in her chair waiting for her name to be called. This could all be happening without me. This is what doctor after doctor told me I would not be around for!

And then I thought about all the times I wasted sleepless nights and tears over the what ifs of missing this, yet God knew all along that I would be here to celebrate with her!! And while I would love to say, “In your face doctors, I proved you wrong” I couldn’t help but feel a little guilt come over me as I thought, “is this what God is saying to me?” Seriously though, all this time I wasn’t sure I would be here for this day and I fought hard to be here, to see my little girl grow up…yet it wasn’t me who had the final say…it wasn’t even my fight that got me this far. This is all His will. God knows how many days we will be on this earth so he could easily be saying “in your face Becky, in your face doctors.” How sad that made me feel when I realized that I really hadn’t had complete trust in His plans for me after all.

But then my thoughts went back to my gorgeous daughter walking across that stage!

Skyler has seen more sickness and death and tragedy and sadness and heartbreak in her life…way too much and way more than any 18 year old should have to experience. But…like our Pastor Jim once said, while it’s difficult and we don’t want to experience or see any of our loved ones hurting or experiencing pain, sometimes it’s better to see that life isn’t so easy at an earlier age…that life on this earth is filled with hardship and sadness and disappointment…unfortunately that’s just the way this world is. BUT, our hope is in Jesus because an everlasting life with Him in heaven is filled with joy, no tears and no pain…

I am so sorry for things I did that affected Skyler…and I am sorry if there was ever a time in her life when she didn’t feel like I was present because of my own health. I am sorry that all she has ever known is a sick mom. But, I am not sorry for the fact that such hard circumstances have made her a stronger and more caring young woman. Skyler is amazingly strong…but I pray that she doesn’t let that strength and independence prevent her from allowing anyone in to her heart like I so often have! As many times as she may have cried, she also rose up above those sucky situations and showed the world that she couldn’t be broken so easily. As much as she has shed tears…she has shown off that gorgeous smile of hers…so much more!!! Nothing will break her as long as she remembers who she belongs to…so straighten that crown😘

I have so much love for her and will do whatever is necessary to make sure she never loses hope because of this tough old world…to make sure none of our kids do!! I am so unbelievably proud of the young lady she has become!

Ohhhhh trust me when I say I do not want to let her go but at the same time I am excited to see the plans God has in store for her and I am excited to see what the next chapter holds!

While we have had our share of arguments…mostly because she didn’t agree with my rules 😜…I will always love her unconditionally! I will love her just as much on the hard days as I do on the easy days! Nothing she does will EVER make me love her less!

No matter what my aprilskye…my hunnybunny😜…my sunshine…my Skyler Marie…you are loved!! Life is going to throw so many tough crappy obstacles at you but have faith and fight through the tough days…because those tough days often lead to so many more beautiful days! I hope you have seen this through me!

Only God knows what is coming your way so trust Him, thank Him, turn to Him for all your needs, believe in Him, love others like He loves you and always find something to smile about Skyler…no matter what!💕💕

Love you always and forever💕💕💕

Follow up

Had my follow up appointment on my eyes today and I was ecstatic when I found out no contrast was needed…just a quick simple scan of my eyes! Whoot whoot!! It’s crazy but for some reason I just don’t like getting an IV and contrast at the eye doctor!

Now I just had to wait to see the doctor and then I would be able to head over to my next appointment! And I was ahead of schedule so thought I would even get some quick shopping in for Easter!

Unfortunately, the excitement I had been experiencing was short lived as the doctor came in and explained to me that I had more leakage and swelling. However, unlike the previous issues I have had that resulted in six eye surgeries, this time the leakage was throughout my entire eye and not just in one area meaning…laser surgery would not be an option.

He went on to explain how I would now need routine eye injections…and just like that, it took every ounce of me to keep from bawling. I smiled and nodded as he explained to me that of course I was the most complicated scenario out of what was possible. He felt with my diabetes, pulmonary hypertension and all of my trauma I have had to my chest, that my eyes indeed were also lacking oxygen, resulting in the issues I am having. He continued with informing me that I would need injections every four weeks most likely…indefinitely. Guys…that was so hard for me to swallow!! As much as I have come to terms with indefinite angioplasty and stent stuff…I just couldn’t shake the thought of this eye junk for the rest of my life!

I was sent back to the waiting room until I was called back in to the operating room. And of course…a whole new experience…that I really wish was the first…and last. They suited me up with a mask, a cap and tilted me back in a chair.

The technician then explained what was going to take place starting with A LOT of eye drops!! Once tons of eye drops were in, she took a long q-tip and had to wipe the inside of my eyelid with it…60 seconds three different times. And yes…that was very uncomfortable! Then more eye drops and two syringes full of liquid stuff in my eye. She then put iodine over the entire eye area just in time for the doctor to come in and give the injection.

I will admit, the pinch felt pretty intense and I jerked and grabbed the handle of my seat. Once it was over he asked if I could see his hand and when I said yes, he said “see you in four weeks” and I was done!

I checked out, got to my car…and just cried! I cried because at the beginning of my appointment, when things seemed to be going so well, I had remembered to thank God for blessing me with an easy test! Yet not even 10 minutes later I was told I would need these awful injections for the rest of my life!! I cried because I just didn’t know why every part of my body had to be so broken. And I cried because in that moment I was selfish and had nothing to thank God for. I mean seriously…I had just thanked Him for an easy test and thought the worst was behind me for the day!

I did acknowledge that He knew what He was doing but in that moment…I didn’t care. He could have made those test results perfect and clear of any swelling but…He didn’t.

I went to my next appointment and pushed through that then got home and put on a brave face for the kids as I walked through the door. Everyone was able to buy the smile I flashed them except for Skye. She always knows when I’m not feeling well or when something is wrong.

I filled her in on how my appointment went and when I showed her my eye…

She exclaimed, “you have a hole in your eyeball”. The red spot is where I got the injection.

I went upstairs, hid in my room and after about 10 more minutes of crying I finally was able to recognize something to be thankful for…”thank you Lord for letting the doctors catch this soon enough to prevent any vision loss”.

I went back downstairs and watched the kids play outside for a bit, made supper and went on with the rest of my night.

So, that was my day! While it definitely wasn’t the news I wanted to hear, I am grateful that I have not had any loss in vision and I am grateful that there are chances for the doctors to help prevent vision loss!

I am also hopeful that this doctor could be wrong and the next time I go back in four weeks the swelling will be completely gone and no injections will be needed!

Living Life Rare

As many of you know, today is Rare Disease Day! There are approximately 7,000 rare diseases with no cures and very limited treatment options. 1 in 10 people are living with a rare disease, making that around 30 million people! We really are not so rare after all!

The last day of February is a day dedicated to raising awareness for rare diseases as well as giving individuals a chance to share their stories as to how living with a rare disease affects them and their families.

Of course I am one of the rare ones but unfortunately I was not able to make it to a Rare Disease Day event today so figured I would share my story again on a day that has come to mean so much to me!

My life has definitely not been easy. For me, living rare means chronic pain, pure exhaustion, biopsies, I’ve had a thoracotomy, eight stents in my chest, six eye surgeries, two back surgeries, female issue surgeries, never ending tests, scans, lab work, countless doctor appointments and a ridiculous amount of angioplasty procedures…all of which I will continue to go through on a routine basis for the rest of my life because there is no cure for Fibrosing Mediastinitis. I will always have symptoms…some days feeling symptom free…and other days those symptoms will keep me in bed all day.

But, in the midst of all of the testing and recovering and pain and fatigue…I have also found hope. Living rare also means trusting in God, developing more meaningful relationships with my loved ones, enjoying the little things, appreciating the many blessings in every day life that so many tend to overlook.

Living rare has in fact taught me how to live life…how to live in the moment and it has opened my eyes to what truly is important!!

And of course I can’t share my story without mentioning my husband who has been by my side through it all. I met Tim 10 days after I got my first set of stents. One doctor finally had helped me and told me to go live my life after so many other doctors had told me to make arrangements for my one daughter at the time because I was dying. Meeting Tim at that moment was not a coincidence.

I could not have gotten through the last several years without him. No matter what we have faced he has always been able to make me laugh through it all. So glad to be pushing through this crazy life with him…together!💕

So for Rare Disease Day, if you have 9 minutes to spare😜…I have attached a link for you to get a more intimate look into our rare, yet beautiful life. #godisgood #fightforacure


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!

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!!