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!! 



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!!

The manly man behind the beard…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Is it really so?

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

Not to mention… I’m kind of excited to have my hubby back…and the long hair isn’t too bad either!💕😍😘

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

No dogs he said…

I’m not a dog person he said…

Absolutely no dog in the house he said…

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

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

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

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

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

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

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

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

But then Friday morning I received this text from Tim…

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

She handled the drive home very well!😉

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

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

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

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

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

One year…

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

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

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

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

Especially when on blood thinners…

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

As well as to the swimming pool and parks…

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

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

And the produce is turning out to be delicious!!

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

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

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

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

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

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

I’ll Take It As A Good Thing…

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

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

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

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

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

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

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

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

He’s making diamonds…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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