After “previewing” this, Tim was quiet and simply said this is a heavy blog so I wanted to give you a heads up…
I am attaching Sharon’s post for those of you who do not follow her Facebook page. Her son Cody also has Fibrosing Mediastinitis and is in need of some major prayers right now. He was recently in the hospital for a collapsed lung, pneumonia and now he is back in the hospital due to continuing to cough up significant amounts of blood. This was one of her last updates…
“Dr. Thomas decided with Cody coughing up blood from the left lung he doesn’t want to take a chance of it going into the right lung, so they are going to intubate Cody & for now just put a balloon in the left lung to hold the blood in the lung until they figure out what to do with his lung. So chemical induced coma”
Recently, I have been approached by more people and they are trying to grasp how I live like this…how can I go through life with a smile on my face when I have so many challenges and a nasty disease that is sucking the life out of me…literally?!
Well, it is because of Cody and others fighting this illness that have even greater struggles than I do. While looking at Cody in the hospital takes me back to the days of my most severe symptoms and how I overcame them, it is also a reminder of what this disease can do…a reminder as to why I must cherish every day given to me. While my story sounds horrible to others, I am actually one of the “less complicated” cases of what this disease is capable of. Cody is only 23 and has been through more than anyone should have to go through! My heart aches for him and I can’t imagine the pain his mom is feeling.
I do know, the only way I have gotten this far is by God’s strength and by His grace.
We have been attending some churches in Waverly and while my family absolutely loves Praire Lakes in Cedar Falls, it would be nice to find a church more local, especially where the kids can become more involved.
Just over the weekend, we attended a church we have been to a few times, and the sermon was on blessings and broken. It is smaller than Prairie Lakes so I had to hold in my tears as I could relate to every stinking point the pastor was discussing but I didn’t want to be the new visitor sobbing😉 When he began the sermon with saying “God graciously works through our messy lives,” I knew it was going to be a long hour! Point being, through all of the heartache and disappointment, the hardships and the struggles, God is doing good.
It took me a while to get over the anger and bitterness of my disease, which again, the pastor specifically cited this week “fight bitterness by remembering God is doing good,” because bitterness is my biggest struggle…especially now seeing Cody in his hospital bed in an induced coma. It makes me hate this disease even more, and the fact that we continue to be a guessing game to all of the doctors in regard to what can be done to help us, can be even more frustrating…but God is doing good and we must keep Him as our focus!
All I can say to Cody and his family is that I am so sorry and I will continue to keep all of you in my prayers. And I ask anyone who reads this blog that you please do the same for my FM brother!
I had my two week follow up with my doctor and he suggested that I could do another injection but since I am showing some progress, I am waiting to see if my back/leg continues to improve over time.
I am down to physical therapy twice a week and while I still notice pain in my leg, it is significantly better and I am back to being able to do most of the things I need to be doing…but still with frequent breaks in between.
As for my FM, it’s that time of year. With the cold and windy air, my symptoms have started to flare up especially the headaches and increased chest pressure which brings on the cough, but otherwise I am hopeful that I will not need to go see any of my doctors before my scheduled appointments in December and January. A full 6 months!! That seems forever after this last bout of problems I have had, so 6 months is an extremely huge blessing!!
This was our last week of crazy, at least with sports! Skyler is done with volleyball and had her last performance for color guard. Way to pull off another year!!
Okay…the day you see me in a picture without my right leg bent…you will know I am at 100% hahaNathan also finished up football with a parents verses players night. Parents won and showed no mercy on the 6th graders!
Nathan also finished the season pulling off the last three of the five plays in the last game with a good run of the ball one play, making a tackle another time and for the final play of the game, he recovered a fumble!! So proud of our kids for their hard work! He’s number 28, right in front of number 60 and they are showing off their “Super Bowl” rings😃
So, no more volleyball and no football…now what? Ha. Kids have been attending a Wednesday night church program locally and all four of them really enjoy it…it also allows Tim and me an hour and a half to ourselves! Something we have been lacking while the kids have been so active with sports!
Leah also continues to dance and soon we will be having orchestra and band concerts and dance recitals and school programs so maybe things won’t be less crazy 😉
Enjoy your week and don’t forget to find something in every day, to smile about!
I am happy to say I am FINALLY getting some relief in regard to my back and leg!! I’m not sure if it’s the injection kicking in or the fact I had almost been home bound the last three months…but I feel better…and just in time for a fun filled weekend!
Saturday we celebrated Asher’s birthday and he was potty trained by Friday so officially before 3 years old! No more diapers!! We had a busy day of playing outside then we went to the Bremer Diner for delicious dinner! The kids did great as this was the first time in a long time, that we had taken them out to eat!
Asher even got a special piece of birthday cake which we planned to take home with us…but once he started eating…he didn’t stop!
Then it was time to come home and open presents!
Sunday morning…bright and early, Nathan played football in the Unidome…
We played against Sumner, Tim’s hometown, meaning Nathan also played against his cousin! We lost by two points but it was a close game and it was a lot of fun to see them play together! I cheered for Waverly but of course when Trey made some good plays, we cheered for him too because of course we want to seem them both do well!
We then finished celebrating Asher’s birthday by attempting his first movie ever at the movie theater! This time big sister got to celebrate with us…and he did great! We were all able to watch the entire movie without any fits….or potty breaks!
Then we were able to come home and do cake!
Tim went and did chores then we finished off our busy weekend at small group…which was much appreciated as Tim and I were able to regroup, let go of some frustrations that had been building up and get back on track with focusing on what really matters!
Today I got to do my very first promotion for my book on our local radio station 99.3 Kway Waverly! I sure was nervous but Tim and Asher were there to keep me distracted until it was time for me to do the interview.
Once they came out to get me I felt like I was walking in to the principal’s office…not that I would really know what that’s like though 😉 Before I went live, the djs asked me a few questions which made me feel more at ease knowing I would be able to answer them. And then it was go time…
I was a little nervous and had been praying for God to give me the right words to say. Again, I am a very shy person and when younger, I was always the first one to class, the first one to anything…just so I didn’t have to walk in front of anyone and direct attention towards myself…and now I’m live on radio, trying to get peoeple to read my story where I am sharing all of my emotions and feelings that I put down on paper….the emotions and feelings I had tried so hard to hide at times! Never in my wildest imagination did I think this is where God would lead me…soooo far out of my comfort zone. It’s crazy but absolutely amazing!
After about 10 minutes it was over. My voice didn’t tremble so bad that they couldn’t understand me, I didn’t get sick or pass out 😉 and minus forgetting to explain some of the most important details…what fibrosing mediastinitis actually is and how ill I was…or giving my website, I think it went okay! I am attaching the interview for those who aren’t on Facebook or in the local area to hear it.
Thanks again to 99.3 Kway Waverly for giving me the chance to share my story!
As for a quick update on my back..still not much relief from the injection. Unfortunately after talking to my physical therapist, I am wondering if I just need to wait the pain out. At my appointment Friday, my physical therapist is still trying to figure out how she can help me to avoid surgery. She feels that the herniated disc is simply too large, however, she is being patient with me because I am standing very firm on my decision that I will not do any type of back surgery. My back is okay but my leg has yet to show much improvement. I continue to struggle with standing or sitting too long. I still have hope that it will get better and I am praying within a few days that I will start to notice a difference from the injection.
Then this weekend was my nephew Tyler’s wedding and what a great time it was! The wedding was beautiful and I could not believe that it was my sister Michelle and her husband Jeff walking down the aisle with their oldest son Tyler!! If you’ve read my book, you will be able to put some of the names to faces. Tyler is my nephew who ran my first 5k with me after I received my first set of stents.
The entire Runde clan and my dad were the ones who took me on my first portaging experience in the boundary waters! These guys will do anything and everything to help out and support family! Love you all!
While Asher did not do well flashing a smile for pictures… he did start a new trend called “the Asher” in which the entire wedding party put their heads down and then peeked up with a frown for the picture…which I can’t wait to see!
Of course he was all smiles later on and most importantly…he walked down the aisle!!
The wedding was followed by a great reception and I got to see Julie!!!! My amazing cousin!! Growing up it was always my cousin Julie, me and my sister…we always had a blast together and even though we don’t see each other as often, we can always pick right up from where we left off.
This weekend we realized…we are the “oldies” and now here our kids are growing up! Here are Ashley and Emma, my brother’s daughters with Skye…It was so fun to hear the girls laughing together and brought back all the memories of when they were younger and inseparable…but they’re all teenagers!!
When everyone was leaving and saying our goodbyes I couldn’t help but tear up. I get to see my siblings and their families throughout the year but cousin Julie…was the hardest to say goodbye to. It has been over four years since we had seen each other…and we used to call each other daily!! She has gotten me through a lot of tough times in life…and she was the crazy one to go see New Kids on the Block with me at age 15..and 30!! Haha! Where has the time gone and why do we wait for just “special” occasions to get together??
My other bestie and sister in law Sarah was here as well so it was great seeing her but we didn’t get a picture 😦 And this is our Uncle Matt…who experienced the aftermath of us seeing New Kids On The Block during our teen years 😀
A little Becky and Julie…watch out world!
Leah loved dancing with cousin Mary and it was hard to get Leah off the dance floor!
It was a great weekend to celebrate with family along with my nephew and his wife on their new start as husband and wife together!!
I also got a lot of questions over the weekend just exactly where to buy my book from so I will give a quick update on that as well. I am very happy to say that Wiley’s Christian bookstore in Cedar Falls has agreed to stock their shelf with my book and already put an order in on Friday!! Thank you mom and Wanda for supporting me and if anyone’s in that area make sure and check it out within the next couple of weeks!
Tim also continues to plug away and with Sumner being his hometown, he got a lot of response! Lande, a real estate company/antique store out of Sumner, bought books on the spot from Tim and they are selling them out of their location. The new shop Maker’s Market in Sumner will also be selling my book on their shelves, I believe starting next Thursday! That shop is pretty neat and has some amazing things, especially some very cool personalized engravings so check it out if you are close by!
As far as places to purchase in Waverly, the Waverly Democrat, our local newspaper, took some of my books immediately to sell so you can pick one up there. She apparently was extremely excited and will also be calling to do an article in the newspaper as well as a possible video for the Internet! Yikes! Not to mention Renewed Purpose, a local shop in Waverly already has a few of my books on their shelf too!! We are so thankful for some of our local retailers being so willing to support us!
And finally, this Tuesday October 6th at 8:30am I am doing a live interview on 99.3Kway, our local radio station here in Waverly, to promote my book and bring awareness to fibrosing mediastinitis, as well as to encourage others to never give up…another yikes!!
So write the interview on your calendar now if you want to listen otherwise I am not giving out reminders😉 For those of you who know me…I ramble and don’t make sense when put on the spot! Yes, I am one of those people who leaves a 3 minute message then will call back and leave another 3 minute message apologizing for the first message…right Sarah?! ☺️
So that’s the update and thank you Tim! While I am pretty nervous about some of the interviews, this is God’s book and it is all in His hands! Just pray He gives me the right words to speak 😉
Thank you to all who have either bought a form of my book, have shared posts or have left reviews! We truly do appreciate all of your support in helping me bring awareness to this nasty disease!!
Well, the epidural injection has finally happened, and while I didn’t get instant relief, I do think my leg might be a little bit better tonight! I started getting nervous on the way to the appointment today and told Tim how painful it sounded. He just blew it off and said “are you kidding? I know how tough you are, this is nothing compared to what you have had done to you.” And that was that.
Tim has been pushing my book and for those of you who follow us in the Twitter world…I am sorry! I am sorry that he is blowing up Twitter by tweeting everyone and their mother! So, of course since we were going to Waterloo, he wanted to hit a few potential “selling spots” before my appointment.
I had to pick up some pants for Skyler so he dropped me off at the mall then took Asher over to the Christian bookstore to see about getting my book on their shelf. While the ladies were extremely nice, they had no control over what goes on the shelf and directed him to call corporate then gave him the contact information.
Meanwhile, I am still at the mall patiently waiting, perhaps a little frustrated at the fact that he’s taking so long because remember, my back and leg have yet to feel better and it doesn’t take much walking…or sitting, before the pain flares up. Finally, he pulled up and I saw this on the front seat…a study bible, something I’ve been looking to get for a long time. He sure does know how to lift me up when I need it the most.
So off to my injection I went and yes I was instantly annoyed the minute I sat down to wait. Nothing particular, just the fact that here I am again, waiting for yet another not so comfortable procedure, all while knowing Tim is racking his brain figuring out how much work he has to do when he gets back because of another day at the doctor with me. But he doesn’t show his frustration, surprisingly, and instead finds ways to make me laugh and keep me calm.
I really like the doctor and as I was back in the surgical room he told me about how he had taken the time to research my disease and how rare it truly is…perhaps simply trying to distract me from what was to come. We then started the procedure. The injection to numb the area stung and a lot of pressure was felt as he injected the medicine but then it was over. I was given the run down on the recovery and instructed to do no driving, heavy lifting or bending such as laundry or vacuuming, etc. I told Tim and he just laughed saying I’d obviously been on that restriction for a long time. 😛 And of course due to it being a steroid shot…yep, gotta keep an eye on my sugars the next couple of days due to them spiking higher from the injection.
I did not get instant relief but the nurse did say I might feel worse before it gets better. Plus my mom is just happy I will start taking my Plavix again tomorrow! We came home…well after Tim was crushed…and I’ll spare details but say this…just because a barn might be happy does not mean Tim is happy 😉
I have been resting and icing my back most of the night while Tim is rushing to get chores done between taking and picking Nathan up from football. The kids have been playing great so that I don’t have to worry about any lifting or bending.
I also missed yet another volleyball match but thankful for my dear friend Dusty who provided updates via text on how Skyler was doing as her daughter was playing against Waverly tonight. Dusty was even nice enough to share with me that Waverly beat them! What a good friend! Haha!
I will continue with my physical therapy and hopefully in the next few days I will start to see results with my back and that the leg pain especially, will start to disappear! The good news is that I know I will not be worse off than I started for my nephew’s wedding this weekend!!
Thank you for all the prayers and thank you Tim for the overwhelming excitement you have been expressing over my book! While I might be just a little bit embarrassed, I am glad to have you by my side knowing that you are my biggest supporter in life! Love you!
Ohh, P.S….Please pray for Tim as his back is really hurting him tonight…😁😒😊
After one more phone call to Iowa City this morning regarding the pain I am in, also reminding them that I am going on two weeks of no Plavix when they were concerned about me being off it for only seven days, I am finally scheduled to get the injection for my back this Thursday! It sounds like there was a lack of communication between the two doctors but regardless, I finally have a date!
Otherwise, nothing new to report! I continue to be hung up every other day for physical therapy with traction and I continue to work on the stretching exercises, however, I am not showing many results and I am still a mystery 😉
My nephew Tyler will be getting married this weekend and Asher will be wearing a tuxedo and walking down the aisle as well so you know I will be blogging again after the wedding 😉 We are looking so forward to seeing a lot of family we haven’t seen in awhile not to mention celebrating a new beginning for Tyler and his soon to be wife! How do they grow up so fast?! 😉
It does sound like I will be sore for awhile from the injection and I will also need to ice it and rest the first 24 hours…making this very close for being recovered in time for the rehearsal night and the big wedding day. Prayers are appreciated that my injection goes well on Thursday so that I am good to go by the wedding!
Julie!!!! We will see you this weekend…and I am sorry in advance for whatever my husband might say 😉 haha!
That’s all I’ve got for now! Enjoy the rest of your week and again, thank you all so much for the prayers and support!!
Well, with all the excitement of my book, I must say it was a great distraction from yet another frustrating week. After emails and phone calls to Iowa City, still no word back from pulmonology in regard to giving the final approval for my injection. I did talk to the local nurse who informed me that this local doctor has been reading up on what fibrosing mediastinitis actually is, which I thought was pretty cool! BUT, he again does not want to do the injection until he gets that final approval! Which I completely understand…but still frustrating! And I continue to wait.
I also started physical therapy and this too was extremely disappointing. The pt was of course very intrigued by my illness and had many questions which I was more than happy to answer. As she began to examine me she had a puzzled look on her face and at one point just stared at me. Instantly my heart raced because I know what that look means…but this is my back…I should not be getting “the look.”
Unfortunately that same look implied what it always has in the past, followed by her telling me that I was not exhibiting the “usual” symptoms for a herniated disc. She reports that there were four things wrong with my back listed on the order she received, which was already “different.” She them stated that she was wondering if I could have a bulge in an unusual spot, something very “uncommon” but she said it has been known to happen. Really? “Uncommon” and “different” for back problems? So yes, you know where this blog is going.
She continued to exam me and noticed all of my extra pain and sensitivity was in the right side of my spine pretty much from the middle of my back all the way down. She also said it appeared that I had a lot of inflammation. Did you read that honey?! Not gaining weight…I’m just full of inflammation 😊
Due to such “unusual” symptoms she said she was going to call my doctor to visit with him as well as request to see the MRI. And then it was time for…traction! Due to me not being able to lay on my stomach, she had me lay flat on my back and then put a belt around my stomach and made it tight. Okay, to those of you reading this, probably thinking no big deal, but to those with FM…you are well aware of the problem here. I have 8 stents in my chest, I sleep elevated, I get heart palpitations and my breathing is not regular, so laying flat with my stomach constricted was not good.
She then put a rope around this bar thing that was above me then attached the rope and lifted my whole middle up, turned off the light, shut the door and there I hung…for 45 minutes!! While I couldn’t always get full breaths on occasion, it did relieve some of the pain in my leg and back…until it was over.
As she unhooked me and lowered me down, the pain in my leg and back was instantly back even stronger. I figured this was common as any type of therapy always takes time before you notice results, but she thought differently. She was actually shocked that my pain had returned so fast after such a long session of traction. Again she stared at me and shook her head then said “I was going to have you see another therapist but you’re too complicated so I’m keeping you for myself.”
I actually got a kick out of her honesty and the fact that she didn’t pretend to know what my body was doing. At the same time I was quite disappointed that this turned out to be another problem that couldn’t be cut and dried for me. Unlike the typical patient who would be receiving exercises to do at home, she told me to avoid all activities that bring on the pain, but then she realized that I have pain when I walk, stand or sit. Again she gave me “the look” then basically just said for me to do the best I can.
My second session I thought would be better because I told her my back seemed to improve but this darn right leg was still excruciating. She burst my bubble by stating she would have liked it better if I would have said it the other way around…that my leg was better but the back was still bad. She did state that she had seen my MRI which had shown the bulge was pressing on a nerve…an unusual spot of the nerve…making it difficult for them to exactly pin down what is needed to improve my pain. She then questioned what the doctors would think about surgery…back surgery that is. Since she has been so blunt and upfront with me I decided to do the same with her by responding “the doctors might be okay with it but I’m not and I won’t have surgery.” Well that is that she said and then she discussed the pros and cons of back surgery. I again said I would not do it.
We did the traction again but I got no relief from it. But, this time she had come up with some exercises for me to try at home. It’s a start!
So, that’s where things are!
I also picked up the 5k packets for dad and myself and yes, seeing the shirts made me even more disappointed that I will not be participating due to this back and leg pain….because of BACK pain, not because of my FM! Ugh! Nice shirts though and I will have to walk the route someday when I am better to feel like I earned the shirt 😉 And from looking at the pictures I’m posting, makes me realize that I haven’t heard the phrase “but you don’t look sick” in a long time! I get a lot of “you look tired” and yes, yes I am tired ☺️
I know, it’s not like this is the only 5k and I will have plenty more to partake in! And that is my next goal!
So with all the frustration over my appointments, still getting no relief for my back and missing out on the first 5k I had signed up to do in so long, well…I think God’s timing with the book was perfect!! After almost two years, it is complete and I actually have a book, a huge accomplishment for myself that I couldn’t have done without my husband encouraging me along the way! And so much support from all of our family and friends who shared my links and our posts to get the book out there in order to help bring awareness to fibrosing mediastinitis!
A little sunshine peeking through the rain…a big God showing His grace!
And I got to hang out with this cutie for the night while everyone else was at the football game so as far as I am concerned, what’s a little back pain when I’m surrounded by so many blessings?! Enjoy the beautiful weekend everyone!
I’ll Take My Disease Rare Please, is complete and I am ready to share my story with you….I think!!! 🙂
Almost two years ago God put the idea on my heart to write a book, which I thought was impossible, and just crazy, but after praying and receiving encouragement from Tim, here it is! Wahooo!! God is good and I am so glad I put my trust in Him! No turning back now as this is all in His hands 🙂
Here is the link to my website for you to preview and purchase if you would like to see how this all began 🙂 It is available on Amazon but just for kindle at the time. We prefer that everything be purchased through Westbow and eventually they should have an ebook available sometime soon in the future. AHHHHH!! Thank you all for your prayers and support and please if you buy my book, make sure and leave some good positive feedback. Haha 🙂
While I really liked this doctor, when he first came in staring at my chart, fumbling over what to say until finally settling with ” wow…you’ve got quite the medical stuff. I’ve never worked with anyone with such an extensive history,” I knew I would probably not get the results I was hoping for. He was very intrigued by what Fibrosing Mediastinitis was and had a lot of questions. Once I mentioned I had eight stents and what FM actually does, he looked at me and seemed hesitant to ask the severity of my condition, so I joked by saying I was given 10 years to live but am going on 13 so it’s kind of life threatening 🙂 He didn’t laugh and continued to read through my chart.
We reviewed my symptoms and he also pulled up the MRI which showed that I had a very large herniated disc and then the disc below it was torn. And after doing a physical exam and me not presenting “normal” symptoms, he felt more than just one nerve must be affected. After discussing options, he did feel I would be a good candidate for the injection, “however”…and this is where I tried my hardest to keep my composure as I knew what was coming.
Because of my FM, he wants to talk to my Iowa City doctors to make sure this injection would not cause any complications due to my FM. He also informed me that I would need to be taken off of plavix for seven days before I could get the injection so he also needed that approval from my doctor as well. This doctor explained some of the risks with the injection and while he said he had no issues actually doing the procedure, he knew nothing about my illness and wanted to discuss everything with my Iowa City doctors before proceeding.
By this time I was unable to prevent the tears from flowing down my face. This was the final punch I could take. I explained how miserable I have been over the last couple of months from the pain and how I can barely function, I can’t sit long yet I can’t walk or stand long either, not to mention my eye surgery and all of the testing I’ve been through but then…I just stopped talking, feeling helpless and back in that all too familiar spot, knowing my pleas would only get me a remorseful look from the doctor saying he was sorry. But thankfully Tim spoke up after I shut down.
We discussed stronger pain medications but again I want something to actually help the problem, not just cover it up. It was decided that I would try some medications that actually target the nerves that are being affected, hoping that might alleviate some of the discomfort. We also plan to set up physical therapy with traction that he said is specifically used in situations like mine where the herniated disc is so big. I had no idea what that was and when Tim began telling me they basically strap me in and hang me upside down…I just told him to stop😳 The plan is for me to talk to my pulmonologist and then he would talk to my cardiologist and hopefully things will get lined up for me to get the injection.
I thanked him for his help as he did seem extremely sincere but the minute we were out of his office, I completely broke down…in front of Tim. I tried to control my sobs as I walked as fast as I could to the bathroom, wanting to cry in privacy…but remember my back and leg are bad so this was not a fast walk ( run Forrest run!)…which made me cry even more! Ha!
I tried to pull myself together while in the bathroom and then Tim and I got to the truck and of course this is the song that was playing….which only led to more crying…and more uncomfortableness for Tim 🙂 Yes, God, I know You are still with me, so I continued to listen to the lyrics as Tim and I sat in silence.
Once calmed down, I was able to call my favorite nurse in Iowa City only to discover she is on vacation until next Monday. I just chuckled and thought “really God, you’re going to even make this difficult?” I was then able to leave a message for another nurse asking her to have my doctor call this new doctor asap in regard to my pain and getting an injection set up. I have yet to hear anything back.
Then as I was talking to mom, I mentioned things will probably turn into a bigger mess, if that’s even possible, now that we are getting Iowa City involved. She told me to stop thinking like that and I got short with her and basically said the reality of my health is that it is ever lasting and everything will always be a hassle. It’s always been that way so why should I think that’s going to change now? I’m not thinking negatively, I’m accepting reality. This doesn’t mean I’m giving up though.
To top the day off, I got my sleep study results back indicating that I don’t get much deep sleep or much REM sleep. The doctor felt this could be due to the pain I have at night from my FM but again, to treat this, we must treat the “underlying medical issue”…which is my FM…but there is no treatment for FM…
It’s frustrating yes, and once again, this is by far the worst stretch of health problems I’ve had since 2013 when we discovered my disease was progressing. Tim and I both feel that my body has not been the same since the blood clot in my chest back in 2013. My body is completely broken! I am back to symptoms and answers, but no help. Now I wait for doctors to contact each other so that hopefully maybe in a couple of weeks I can proceed with the injection. Until then I will pray that these other medications provide at least some sort of relief.
I was pretty upset after my appointment and have had a rough day, even crying the entire time while writing this blog. I know my disease is rare and I can’t blame the doctors for not wanting to do anything, actually I like the fact that they won’t doing anything until they know for sure what they are dealing with…which I always tell them…I am a medical mystery. But still frustrating. And then part of me gets mad at myself because I know I am complicated and I know it’s going to be a battle getting help for the simplest things…so maybe I just need to always go straight to Iowa City instead of trying to stay local. But I already see SIX specialists in Iowa City and do you know I can never schedule appointments on the same day because they all have different days that they are in the clinic. This was supposed to be a simple injection! I really did not think it would be a big deal, it’s an injection, not surgery.
I started thinking what am I doing wrong or what areas of my life must I be failing to keep being tested like this. What am I missing God??? Why do You keep putting me through this? But then I stop and know that it’s nothing I have done or anything I have failed at…and in fact these doubts are the enemy trying to make me turn away and not trust God. Everything I have gone through in the past that I thought was going to finally break me, actually brought me to amazing and beautiful things…and one of the most important things my trials have brought me to is a stronger relationship with God. I do know He has a plan for all of this so I will continue to pray and trust and rely on His strength and His mercy to pull me through.
And in my last blog I encouraged everyone to find something to smile about in every day? Well, when I got home I was able to cuddle with Asher, put a bandaid on Leah to make her ouchy better and I was able to talk with Skyler and Nathan about their day…so this was my something to make me smile today.
Oh, and tomorrow is fashion disaster day at the high school for homecoming week…Tim says these vests were his brother’s but I’m not convinced…and this definitely made me smile…yet a little disturbing! Thank you for all of your prayers and words of encouragement.
Faith, Family, Cows, Fibrosing Mediastinitis #mylife 