So, I will tell you right now, if you don’t want to waste five or ten minutes of your life….stop reading here! There have been a lot of hard days, weeks and months going on and sometimes it feels like there’s a new battle every day for someone so this blog is absolutely pointless. Just think I will share my day in hopes to give people a chuckle!

First off, as I’m getting oatmeal made for the kids, I turn around just in time to see Asher drinking water and attempting to spit it across the dining room floor! Instantly I yelled “no” wondering where on earth he learned that from! Not even five minutes later, I kid you not, I go to take a drink of my pop and spit it out in the sink as fast as I picked up the can, acknowledging that it’s an old can from the previous night. I turn around and yep, there stands Asher looking at me and laughing! But really, I don’t do that enough for him to have learned that from me, and please, no harsh words as to why I’m drinking a pop at 730 in the morning! 

After kids are fed I try to grab a quick shower and usually let Asher play on my phone. While I was trying to finish up, all of a sudden I hear a blaring “shake that…” and whip the shower curtain open to see Asher dancing to Pitbull that he was some how able to access from somewhere?!

 On to the next highlights of the day and it’s only 8:30am! Leah had kindergarten roundup!!😩😩😩 I cannot believe she will be starting school in the fall! Tim constantly insisted that I get there early in case of a line but I just shrugged it off saying we just need to drop off the forms…I printed them from online and filled them out already so I’m on top of the game! I even had the doctor fax over her immunizations!

Well, me being in the airhead state that I am, I take Leah to daycare and ask the receptionist if she wants Leah’s registration papers for kindergarten. Her look right away sends signals off in my head, duh, I need to go to the actual elementary that Leah will be attending! The receptionist laughed and said I was too funny. Yes, I like to just joke and pretend that I’m really this flaky 🙂 

So Leah and I walk over to the school and of course with the cold air, it triggers my heart monitor and I start beeping! Gotta love it and poor Leah gets introduced to some of the administration as her mom sounds like a tow truck backing up, okay the beeping isn’t that bad but still! And as much as it pains me to say this….Tim was right…there was a line! Leah and I waited about 20 minutes but she is finally registered for school this fall!

Later on in the day, Leah decided that she wanted to play beautician and got all of her equipment needed. I of course was distracted and not paying any attention until Leah tells me “the brush is stuck”. I reached back and felt the biggest knot, realizing she had used the new brush she picked out at the store when she was with daddy…a pretty ROUND brush! I think any lady knows that when using round brushes you must be VERY careful to avoid getting that dang thing wrapped up in the hair! I tried over a half hour to get that stupid brush out of my hair before panic set in because I was to be leaving within the hour to take Leah to dance….or maybe just to get myself a haircut! I had a vision of the embarrassment I would feel if I had to go down to the salon with a brush dangling from my head asking them to cut it out. Thankfully Skyler got home from school and was able to work her magic and within about 15 minutes my hair was bristle free!!!

I took Leah to dance and was looking forward to having the next 45 minutes to myself. I started out by going to Renewed Purpose, a local retail store that I haven’t been to in a while. After browsing for a few minutes and picking up some items, I got in the van thinking where I should go next….a half hour of no kids made the possibilities endless…and then I turned the key to start the van and nothing! I turned it again…and again….and again! Are you kidding me?! We just got this thing out of the shop yesterday after they put in a new starter!!

I called Tim because of course he was over in Sumner doing chores, he’s never in town when this stuff happens! I laugh now thinking about the conversation we had! I am sorry but do not ask me what noises the vehicle is making. I think for five minutes Tim was getting frustrated because he was asking me if the van was turning over and I said yes so Tim figured it must be the battery until I attempted to make the sound that the van was doing, which then led to another couple of minutes of me trying to answer his simple question….does it “turn over?”!! For the love of God, I made the sound!! What else do you want?!

It was decided that Tim would finish chores and then come get us. Ok, no kids yet, I can still enjoy my time!! The next half hour I tried sitting in the van but it’s cold outside!!!! I finally walked over to get Leah from dance and then I called Tim hoping he would tell me he was on his way but that wasn’t the case as he still had to finish up chores. Leah and I took our time getting her coat on and then we decided to walk over to the diner for a pop and to color! Thanks for being a blessing to us Matt! The hospitality is always wonderful at the East Bremer Diner 😉

Tim arrived 1 1/2 hours later from the first time I called him!!! He was able to get the van started then followed me back home. Thinking it’s still the starter so he plans to call the shop back in the morning.

Ok, that’s it, that’s all I’ve got! I warned you so don’t be mad for wasting part of your life that you’ll never get back for reading this! Absolutely no point to this blog but figured why not share our amusing….yet every day experiences! There’s so much heart ache all around so thought I’d make things light tonight!

Tomorrow is a new day! Prayers and love going out to all of our family and friends💞 



Ok, I think I will get the bitterness out of the way so I can end things on a more positive note. 

First off, I must say the surgery itself was the worst procedure I have ever experienced. I was extremely nervous and throughout the whole procedure, I pretty much felt everything!  After I was prepped I thought I heard one of the nurses say that they didn’t apply the Lidocaine on my leg to numb the skin. I felt the sharp prick of the needle as they attempted to numb me that way but shortly after, I had quite the discomfort as they made the incision in my right groin, even worse I felt the weird poking and worm like sensation going up my body as they were guiding the catheter up through my vessels. I did have some medication, so parts are foggy yet I do recal jumping every time I felt pain or flenching simply from feeling the touch of the doctor’s hand. I remember this new doctor several times throughout the procedure asking “you feel that?” as I stiffened my leg or tensed up from the pressure. This is the doctor who told us before the procedure that he has done two or three of these surgeries. I knew that was not encouraging! The nurse said she gave me more medicine every time I noticed pain however I continued to be beyond uncomfortable.

After almost 2 hours of doctors poking and stabbing me they finalized the procedure by saying that my PA stents were open. As they were cleaning me up, getting ready to wheel me back to my room, the 3rd doctor who is new to my “case” tells me something to the effect that I should not be crying followed by…”crying does not help your situation”. I swear to God if my leg wasn’t throbbing he would have felt my foot in his groin and then I could have told him crying doesn’t help him either!! And yes, not lady like or Christian like at all but seriously, isn’t that a little insensitive?! I feel sorry for his first two or three patients he did surgery on because for me being his third or fourth, he really sucked!! Instantly angered, I kept my mouth shut the rest of the time in that operating room except to reply with a very sarcastic “oh no, I’m just fine” as the nurses questioned if I was doing ok. I mean, they were just cleaning me up and now they were concerned with my well being? 

Needless to say I was not happy with the results I received after my surgery. In my mind, the worst thing that could have happened did…my stents were open and in fact, even looked great…but now what?

I got back to my room where I would be laying flat for a few hours and the look on my face apparently showed my disappointment and frustration. My mom tried to reassure me that we would find answers yet I got grumpy with her, telling my parents, my sister and Tim that I was done. I am done! I am not putting myself through anything more. Done! I know, I was being selfish but in that moment, I did not care.

It’s the fact that after an awful procedure, I am coming home to battle the same symptoms I went in for, because nobody has answers for me. With a rare disease, doctors are pretty much playing the guessing game. After how many months of me saying something is not right, they decide to review my scans from how many months ago then call me up and says my stents might be narrowing. That was the only reason I agreed to doing the procedure as I thought it was a for sure thing needed to “fix” me. Unfortunately, the only way to truly know, is for doctors to go in and do these procedures. I honestly cannot believe my stents aren’t closed because these are some of the symptoms I was exhibiting before I got the PA stents. I know my body and something is going on, something is not right! If my stents had been closed, that would have been an easy fix, instant relief, and reassurance that nothing else is wrong.

It’s just like when I was first diagnosed in 2002, it’s just like 2007 and it’s just like I felt in 2013, the years when new symptoms flared up. In 2013 I received a couple more stents in my SVC and was to be good to go, however, that wasn’t the case and for a few months I felt awful! I was slowly feeling worse every day. Doctors checked my SVC stents and they were open so I was continually sent back home bc stents looked good. It took over 3 months of me being forceful, and annoying the doctors by telling them that I was not okay, before they were able to discover that my pulmonary artery was blocked, causing my symptoms, which resulted in the two stents.  These are the times leaving me to question, how is this improving my quality of life when I am constantly doing testing and fighting for answers. Mind you I have diabetes so all of the stupid contrast they use for all of these tests can mess with the kidneys and that’s what’s going to end up killing me! 

Ok, my rant is over…I think! So after a few days of rest…and crying…and praying, I am better today and truly am grateful that my PA stents are open. Even better, my GOOD doctor explained that since the stents have not closed yet, that is a good indicator that they will stay open longer. That is wonderful news because after this ordeal, I do not plan to do this procedure again anytime soon, if at all!! It was just the initial shock and fear and unknowing that overtook me, not to mention a lack of meds and a doctor who definitely needs more experience. 

 Luckily my heart has calmed down from that one episode a couple of weeks ago but I am still fighting heart palpitations, shortness of breath, crazy memory issues and most of all that dang fatigue. There are days I’m ready to go and I have the motivation to get stuff done, but then just like that, I’m fried and literally cannot keep my eyes open. I will tell Tim or Skye I need to lay down and next thing I know I’m waking up with my glasses still on trying to figure out if I passed out or if I really intended to fall asleep! I am able to tell when I’m getting to that point of exhaustion so I am fortunate that I can make sure someone is caring for the little ones. I am wearing a heart monitor for the next month to try and catch the symptoms I’ve been experiencing so that doctors can try to figure things out. 

Unfortunately, I am afraid that it might just come down to me accepting the fact that these are what bad days consist of with this disease. I mean, I did develope pulmonary arterial hypertension in 2013, which we recently learned is another rare disease when Tim was watching the list of diseases at the end of the new video for rare disease day!! Wow how lucky am I to have TWO rare diseases?! So while all of my symptoms I had those few days a couple of weeks ago, is an exact description of what hypertension is, my hypertension is “unique” and we all know, especially my brother in law, that is not a good thing. 

And this time at my hospital visit, I did learn that my blood pressure is a lot higher when it is taken on my right arm compared to my left arm as the nurse had checked it on both sides. This of course makes sense and is due to the fact that the FM attacked the right side of my body, the right side of my heart, my right lung, which caused the uncommon hypertension, etc. But again, I’ve had that odd hypertension since 2013 so why is this the first a nurse has ever checked both arms when doing my blood pressure?! Such a lack of knowledge is beyond frustrating. So NO people, me eating Culver’s all the time has noting to do with my hypertension!! 😉

So, I am sorry to my family for being down right awful after my procedure. My sister Michelle did of course have some great comments to make me laugh. Once again, her being there helped to keep my mind distracted, although unlike my last surgery, she did not eat her candy bar over me, causing it to crumble on my blankets 🙂 Her help with the kids has been awesome! I will admit though, one of the worst feelings as a mom is having your kids crying for mommy with their arms wide open and having to turn away, only for someone else to pick them up. However, I’ve pushed my limit too far, too fast in the past and suffered for it, so I’m slowly getting rid of my stubbornness and accepting help. I couldn’t have done the couple of days without her, and it was nice to hang out! Kids clinged to Michelle from the start so it was hard seeing her leave.  I’m pretty sure though my kids have reinforced to her that she should be thankful that all of her kids are almost out of the house 😉

And to my brother Ryan and sister in law Sarah, I know they were disappointed that a snow storm prevented Sarah from being here but it’s not like I won’t be doing something like this again! Shoot, in April I get to do it all over for my SVC stents so I will put her on the top of the list to take care of the kids 😉 Plus Ryan and Sarah provided us with some delicious meals…from our favorite place to eat!!

Thanks to Sarah’s brother Ken for the pretty flowers and umm card. Haha! He too knows the struggles that are faced as he lives with a rare disease himself so he could always use some prayers as well.

Thank you to my mom’s cousin Lori for bringing over some wonderful meals!!

Thank you to Tim’s family for all the support and prayers and meals! And to my awesome parents in laws who wrote a letter about my illness and what it’s like to live with a rare disease, sent it in and actually got the house of representatives to read their letter about my disease! Mom in law Debbie was kind enough to get up at a crazy hour so she could get over to our house early and help with the kids when we went to the hospital! Brother in law John and father in law David battled the cold air and did chores for Tim so that he could deal with my grumpy self…before and after the procedure 🙂 But, payback is always around the corner as it was me dealing with a grumpy Tim the day after my procedure when ALL 3 of our vehicles didn’t start due to the bitterly cold weather! Ha go figure!

My other sister in law Dawn and brother in law Aaron are pretty awesome too for cooking up some meals in the midst of their own battle with Aaron fighting leukemia. Please keep them in your prayers always!!!

Then there’s my darn parents for coming home early from Florida to support me as well as to keep Tim company during his long hours of waiting. I have amazing parents who have been on this journey with me from the very beginning. Experiencing so many ups and downs with what this awful disease can do. They have been able to ignore my cries of outrage and frustration and still manage to push forward for me. They have been so supportive and it is because of them that I found answers because so many times I wanted to quit searching…I mean every single doctor over how many years told me I was dying, so why wouldn’t I believe them? My parents have shown me how determination and most of all FAITH in knowing that God does answer prayers, will get us through anything and everything. Thank you mom and dad!!! But, my parents then passed me on to Tim…well kind of 😉

When I told Tim about my illness he supported me but I also told him I was good to go, no more problems. Mom reinforced this too simply because this was what doctors told us! I had received 4 stents in my SVC and that had improved my symptoms dramatically to the point I was symptom free! Of course I was better because doctors told me the damage was done, and stents had fixed that damage! We would soon find this was not the case.

My symptoms came back about 4 years after receiving my stents back in 2007 and it was making life harder to function. Tim and I had been married two years and he had never experienced any of the nastiness this disease can do. I was becoming weak, physically and emotionally! Tim was quick to blow the symptoms off as fast as I was. But I only got worse, staying in bed for days, from extreme chest and head pain or simply because I was too exhausted to lift my head from my pillow. If I was in bed, these were the times when Tim doubted how sick I really was and told me “if you think you’re sick, you will feel worse” and I just needed to be moving, basically telling me to buck up. I could sense his frustration with me but I really couldn’t help it. 

His attitude changed very fast when he came to an appointment with me and heard the severity of my illness from how the doctor explained it to us. Before driving back home from Iowa City, Tim was mad and even yelled at me that I told him I was fine and stents had made it all better. I mean, he was mad! I started crying, saying I was sorry as that’s what doctors had told us and the whole ride home all I could think was Tim had regretted marrying me. After me crying and Tim not talking, the 2 hours of silence made me sick to my stomach as I felt my husband of only two years, hated me, on top of thinking he’d never be able to look at me the same now that he finally understood how sick I was. We got home and this water came flowing from my husbands eyes, something I had never seen 😉 Tim told me he was sorry, sorry that I had this awful “thing” an sorry for not believing me. From that point on Tim has been to every procedure and almost every appointment…and that’s been a lot. When I doubt my qualities as a wife and mother he is quick to lift me up…well sometimes! Ha! When I take my frustrations out on him he is quick to forgive and when we were struggling with the strain of it all and things got pretty bad between us, he was able to lay down his pride and go talk to our local pastor with me. But, he has also made me laugh through it all and his sense of humor is the most amazing quality that I love about him. He knows me well and knows when to joke…and when to keep quiet….but then he jokes anyway which leads me to being mad at him for laughing because I don’t want to be laughing! It’s never failed that when I am weak, he is there to be strong for me.

Tim came into my life 10 days after I received my first set of stents and after that one doctor who finally had helped me and told me to “go live your life”.. .God obviously made Tim and I for each other and we are both working hard at not letting this stupid disease ruin us! Don’t get me wrong though, there are days that are much harder especially when I’m down for longer than 3 days….that tends to be Tim’s limit with taking care of things…and I can’t blame him! The reality is though, when symptoms strike it’s impossible to make them go away any faster, I’m basically just trying to function and trying to wait them out! However, as hard as I try, I cannot conquer the really bad days of this disease!!!! I know Tim can’t fully grasp that, nobody does and the longer I go with symptoms, the more people question if it’s really symptoms or something else and start throwing excuses as to why I might be feeling so lousy… depression, weather, the craziness of life. Regardless, these are the days that test me and Tim the most and we have to make the conscious decision, and effort, as to if we are going to react the way we want to, or let God handle things. This was also discussed in our small group so while Tim and I are still pretty quiet in our group, we have already learned so much!

We have both seen the ugliness and sinning out of anger that occurs when we try dealing with things on our own so I know we will make it as long as we keep God in the center of our marriage, while improving our own relationships with Jesus! So thank you Tim for the man that you are! 

Anyway, I’m just extremely emotional and rambling but I’ll wrap things up 😉 We are just so overwhelmed by the thoughtfulness of everybody, and everyone willing to put their own lives to the side to help us! We are truly blessed with our family and the circle of friends we have! Thank you to you all! Praying is the best thing you can do for us so please keep it up….and meals have been nice too 😉 

Oh and to mom, dad, Michelle and Tim…new rule after my confusing start this time…what happens in the hospital, stays in the hosptial 😉 

Ok, obviously I am keeping my mind busy by taking the time to list all of these. Here are some of the songs I had mentioned in my previous post, along with a couple more.  “Today is the Day” was our wedding song and then a couple of years later Tim and I had a miscarriage due to an ectopic pregnancy.  This was extremely devastating to me and one day as I was driving back home from the doctor, “Blessings” came on the radio. The rest of the songs would come at our most challenging times from 2013 on, when my health was deteriorating and Tim and I were really starting to struggle with our marriage. I can tell you every specific appointment that Tim and I were coming home from, or going to, when these songs came on the radio. This is kind of a timeline of my life over the last couple of years….through music 🙂

https://www.youtube.com/watch?v=zKHRfCHUFOk   Today is the Day

https://www.youtube.com/watch?v=WvgzjNb_X3Q  Blessings

https://www.youtube.com/watch?v=h_gCfA0Dmgg  Strong Enough

https://www.youtube.com/watch?v=UUEy8nZvpdM  Worn

https://www.youtube.com/watch?v=yLr6G8Xy5uc   Lead Me

https://www.youtube.com/watch?v=AiIwpJcQ34Q   Healing Begins

https://www.youtube.com/watch?v=ECGZz5ScfL8  Restore

https://www.youtube.com/watch?v=H7mr-wy2ONU  Lay It Down

https://www.youtube.com/watch?v=qmDiaeXjrC4  Move

Well, tomorrow is the big day and it’s a time that no matter what the outcome, it is always bitter sweet. When they do the heart cath, and if my stents are open then that’s great news! But then what? What is the reasoning behind my fast heart rate, crazy heart palpitations, extreme fatigue and all of the lousy symptoms I have been experiencing? Is my FM progressing this fast or are these just the bad days to be expected due to the way my nasty disease works??

If my stents are narrowing and closed then that is good news only because I now have justification for the last several months of me feeling like death on certain days. I guess out of all the possibilities, stents being closed would be my best option. I would finally have answers, yet that also means my pulmonary artery stents only stayed open about 8 months and that would be extremely discouraging.  My SVC stents stayed open 5 years before I began having problems so I was hoping the same for the PA stents, if not longer.

Tim is the one who has to tell me the results when I wake up from the sedation so he is preparing himself for my reaction 😉 Honestly, no matter what the outcome, it’s kind of a lose lose, at least right now I feel this way simply because I have forgotten how healthy the stents once made me feel. The last several months have been extremely difficult for me, physically and emotionally. Having to get my stents opened is just a reminder that I really am not “cured”, these procedures that have turned in to every 3 months whether for my PA stents….or my SVC stents only confirms that haunting phrase once said to me “we need to focus on the quality of life, not the quantity of life”.

So yeah, this is how I feel everytime I am due to go in for a procedure. Negativity kind of takes over but I know I just need to keep praying and putting my trust in God.  At first though I am fine with having to go in for the procedure and I am thankful that I have something that can be “fixed”. The closer my procedure gets, my emotions turn to doubt and I question if my symptoms are really as severe as I think they are. I mean, I just need to get more exercise and rest right? Then the night before and the morning of my procedure, I feel sorry for anyone who is around me! I turn extremely bitter not to mention terrified thinking about all of the what ifs?! And I think of some crazy off the wall stuff! Or even worse, what will the results bring.

So while I try to read my bible for peace, I swear I turn ADHD trying to understand some of the verses…but I still read and do find a sense of comfort. However, I really feel music has been God’s major source of communication with me. Every situation I’ve gone through, certain songs have come on the radio describing exactly what I was going through along with finding hope in the fact that God is with me, not to mention the reassurance I feel from turning these songs on at the most appropriate times in my life.

In July of 2013 I had developed a blood clot in my chest and ended up in the hospital for the weekend which then resulted in 2 more stents for a total of 6 stents just in my SVC.  The following months would be dreadful as my health began to deteriorate yet my SVC stents were open so I was becoming depressed and frustrated not knowing what was happening to me. On October 24, 2013 we discovered the disease in which I was once told “the damage is done”, was not true. My FM was indeed progressing and attacking my heart.

Through the months of feeling awful, every time I got into the car certain songs played, one being “Worn”, and all I could do was cry and think how depressing! “Lead Me” was another song during this time as I had started to give up my fight, and it was Tim that fought for me and reminded me that all of these tests and procedures were indeed worth it if I could have more time with my family.

The obstacles of facing health issues also took its toll on our marriage and another song “Restore” came on the radio during one of our toughest times. I made Tim listen to it but he just had some smart comments to make, indicating to me that the lyrics had touched him as well. Such amazing songs yet tough to hear just because it was such an emotional time.

But these songs also followed with “Healing Begins” and the song “Move” which motivated me to keep pushing forward.

The last couple of weeks I have been discouraged and every time I get into the car that dang song “Move” comes on which I hadn’t heard it in quite some time. Sometimes I cry because I know this is God’s way of letting me know He’s with me and everything will be fine but sometimes I cry bc I am tired and simply do not want to listen. However, I don’t change the station but instead force myself to listen and let the lyrics sink in. These are the times when I pray even harder because no good ever comes from shutting God out.

So, tomorrow is just another trip to the hospital, another day of Tim taking the brunt of my nasty personality but in my defense, it’s kind of mean for him to eat breakfast in front of me 😉 Another day of me getting grumpy with the nurses because they will probably have to try two or three times to get my IV in, but instead of saying anything, I flash Tim my “look” indicating how annoyed I am. Then I’ll get grumpy about waiting to go in to surgery if they’re behind schedule…I mean it will have been well over 8 hours since I last ate and I am diabetic but yeah, let’s push things back a few more hours! So with that positivity, all should go well right?! 🙂

I am extremely hopeful that after tomorrow I will be feeling a lot better and my blogs will become fewer about the struggles with this disease, but more about the life I am able to live when things are going well for me.

Thanks again for all of your prayers and please pray for all of my family that will be driving. This storm caused a set back with some of them getting to town early but I am so thankful and overwhelmed by all of the offers and support we have received.

Today Asher had his follow up appointment for his ears and the tubes look great. He does still have some drainage however, so the doctor put him on an antibiotic to hopefully clear things up. Asher doesn’t have to go back until his 6 month follow up unless there are any new concerns. We are still hopeful for a chance that he will quiet down one of these days soon;)

As for me, today was a better day. The weakness is slowly subsiding and I have been able to resume some of my regular activities. I was able to go get labs done in preparation for my upcoming surgery so as long as those come back good, then everything (minus me) ha, should be a go for next week.

I did also decide to email the Mayo clinic about some of the clinical studies they have been doing in regard to Fibrosing Mediastinitis. I have had quite a few people in my FM group participate in the study and they have had a lot of success with slowing down and even stopping the growth of their masses! While it can’t fix the damage that has already occurred, it sounds like it can prevent future damage. The drawback for me is that I have had this disease for so long. I also have diabetes so I do not know if I will qualify for the study as some of the treatment options are a no go for me due to the fact they would wreak havoc on my blood sugars. But, after the way this week started out, I figure it can’t hurt to look in to.

The heart palpitations do continue along with the shortness of breath and chest pressure, my typical hypertension symptoms, but thankfully nothing like I had previously experienced! I’m still getting a little flush from the smallest amount of movement but that racing heartbeat is no more!

Actually, the worst part of the day was probably when we rented a movie and I made sure to put it out of Asher’s reach and in a place where I wouldn’t forget it….and yep, it took the whole family over an hour of looking before Tim found it stuck in our junk drawer! I don’t think Tim was amused but it made me giggle. Hey, I keep things interesting around here and if that’s as bad as things got today, then I am extremely grateful God has blessed me with a good day!

And the 50+ extra pounds may be cause for some of the chest pressure….but sooo worth it and see…I don’t look sick right?!! 😉

Ok ladies, how many of you remember being pregnant and the week before you are due, you start having contractions.  They get stronger and stronger but it’s not your official due date yet so you keep putting it off, worried about going in to the hospital early just for them to say you’re not really in labor and send you back home.  Well the last few nights I have felt this way in regard to my heart. Nice, huh?!

Monday morning I woke up feeling absolutely awful.  I was able to get the kids up and ready for school but I felt extremely weak….that weakness you feel after being in bed a few days with the flu, but I haven’t been sick. My whole upper body felt extremely heavy, it took every effort in my bones to just get out of bed, my heart was racing fast and I was beyond exhausted.  Tim instantly knew I wasn’t feeling well by the way I spontaneously shot off smart comments about how he never helps out with the kids and blah blah blah.  I should have at least said good morning to him first 🙂

Tim was able to do chores and come home in time to get Leah from preschool, this prevented me from having to bundle Asher up and load him in the car just to go get her.  My heart began to race even faster throughout the morning, to the point I could not walk from our living room to the kitchen, maybe 15 feet, without having to sit down. I couldn’t go up or down the stairs without feeling like my heart might pop out of my chest and the weakness was just too much so I had to sit on the stairs halfway up. I will admit, I even crawled up the last couple of stairs on occasion to get to our bedroom.  I was absolutely miserable so I pretty much had just stayed in bed.  I simply could not function.

When I got out of bed Monday evening to try and make dinner, the fast heart rate was still occurring along with the extreme weakness but now the lightheadedness and dizziness had settled in. Tim then decided to check my pulse and it was running anywhere from 108 to about 160 just from when I walked across the room.  I should say 108 was resting when I was laying in bed and my heart rate, mind you, is very weird, so we don’t think we even managed to count all of the beats. I should also point out that Tim got out the camera to take pictures as he had never seen so many veins be as dominant as they were in my upper arms. I’m still not sure how I feel about that! Ha! I have had collateral veins in my chest in the past when my SVC stents were closed, yet my arms have never been this bad.

I felt absolutely horrible, yet once again, if I laid down my head and chest instantly began throbbing and I was getting the heart palpitations but if I stayed up I continued to feel weak, dizzy and my heart was racing like something I have never experienced.

Tim and I talked about me going to the walk in clinic but I decided against it.  If I went in and told them I was having shortness of breath, an extremely fast heart rate with heart palpitations and extreme fatigue they would have me on the ambulance to Iowa City in no time. Most likely that would then result in them just telling me to follow up with my heart doctor as scheduled. So I am trying to hold off until I go in for my heart procedure and frankly, the situation really stinks.

I am waiting another week to go see the doctor because this “is to be expected” with my disease. While these symptoms could easily be an indicator of something crazy like a heart attack, to me, they simply indicate that most likely my stents are closed. I have to admit, this episode has scared me because it is the worst I have ever felt.

It has been an absolutely miserable few days but I was able to manage to make it to our small group and that did provide some comfort to me.  We are going through the book of Ephesians and talking about what our roles are.  It really makes me sit back and evaluate if I am living my life worthy of God’s grace.  Battling an illness that doctors know so little about is hard. It is hard sometimes to praise God in these situations. I mean, I am praying my stents are closed just so I will have answers as to why I feel so awful because if they aren’t closed, I’ll be forced to continue to live like this because doctors will have no clue what my crazy body is doing! Yey God, right?!

Not to mention, I had another awful night of coughing and found myself on the bathroom floor praying, PLEADING with God, to make this all stop, make it all go away! I am sick of it!! I am back to doubting myself, doubting my symptoms and even worse doubting my self worth. I have doubted myself as a good wife because again, with all of these appointments I’ve had, come the bills and yet Tim is the one going to work then rushing home to help with the kids, while I’m in bed.  I am doubting my skills as a mother because all my kids want to do is play and hang out with me yet I have been hiding in my room simply because I hate being weak in front of my family. 

And then I think…is this the way to live like I am worthy of God’s grace? Why am I trying to hide my weaknesses and being swallowed by self pity? I mean, it’s not me that is overcoming my illness, it’s only because of God that I am still holding on! I can’t get through this alone…not a chance without Him.

Don’t get me wrong, I do have a lot of great days, better days than bad, but living with a life threatening rare disease also comes with horrific days filled with doubt, fear, pain and defeat. Not to mention even the closest people to me, including Tim, who sees it on a daily basis, I can sense their doubt when talking with them. They too begin to lose sight about the severity of my symptoms and blow it off to my busy lifestyle or having “a touch of something” or I just don’t get enough rest. Hey, I don’t look sick right?!

BUT God is my strength and I shouldn’t hide my weakness or fears, and I sure shouldn’t be focusing on the negativity of this horrible disease, otherwise you can’t see how amazing God’s work truly is and how far He has brought me! So, I’ve had a few awful days but tomorrow is a chance for it to be better. These bad days have led me to sit back and reevaluate my role as a Christian as well as what areas I need to focus on in my relationship with Him. I know He has to be up to something and there is a reason for all of this so as hard as it is sometimes, I still find something to praise Him for every day.

Asher had a successful procedure Friday!  I have to say though, he is a lot smarter than he acts.  We got to the hospital and he was fine until the nurse came in and talked to us.  After she left he kept saying “bye bye” and tried convincing me to put his coat on.  I showed him the blanket and the cool stuffed animals along with the toys and books that were left by the hospital and his doctor for him to take home,however, Asher wanted nothing to do with them and tried putting everything back in to the bag…he knew it was just a bribe for something worse to come.

The nurses came in and I put him in a little wagon and Asher did not fight it, but simply kept his head down the entire walk down the hall.  I think that was worse than if he would have been screaming. Thankfully before I could barely post an update on Facebook, the doctor came in to say that he was done.  He did comment that Asher was a “serious little boy” and then laughed so I can imagine Asher must’ve been giving them one of his looks.

When they brought him back to me he cuddled in my arms but then fought his way over to daddy.  I was so relieved to have him back in our arms and looked forward to a day of cuddling and loving on my little guy.  BUT, by the time we got home he was bouncing off the walls. Needless to say, it was just another day of craziness, on top of following him around everywhere to make sure he didn’t crawl on the table or climb the stairs due to him still being a little loopy from the medication.

He went down for his usual nap and he cried once then stopped so Tim and I were ecstatic thinking maybe he won’t be so loud anymore!  WRONG, he woke up from his nap and when I brought him downstairs I said something about pizza and immediately he began screaming “eat”.

It has been a good weekend and he seems to be adjusting just fine. As long as the tubes help his overall well being and speech, I guess I can live with him getting excited about food.  I have found that it sounds like Tim did this as a child so I guess nothing can fix the genes our kids get from their daddy 😉  I am just so thankful that all went well and the procedure didn’t seem to faze him too much!

As for a follow up on my leg…I did decide to email my local physician in regard to what the orthopedic doctor from Iowa City had suggested. I told him they encourage my local doctor do a full scan to figure out what is causing my pain.  Well, my local doctor did get back to me and said my “leg is a puzzle” and suggested sending me to the pain clinic as well as to come in and discuss treatment options. I really have no idea what the pain clinic is and Tim pointed out it basically just uses pain meds or injections as well as tips on how to manage the pain.

So after all of the last ridiculous 2 weeks, I am back to square one. This is when doubt rushes in and I start to question if maybe the pain isn’t as bad as I think it is. I guess I do what I do when dealing with my FM…I suck it up, deal with the pain and know that one of these days I am going to find a doctor who has answers for me.

Also, I have 2 people close to us that will be having surgery this week, one person on Monday and another person on Tuesday. Please keep them both in your prayers that they do not become consumed with anxiety and worry but can look up and have comfort knowing that God is with them always! Pray for their family to find peace, patience and comfort as well throughout the procedure and recovery time. Pray for the procedures to go well, pray that answers are found and pray for overall improvement with their health!

Oh wait….don’t pray for patience!!! 😉

Finally, yesterday I got the news that the MRI and ultrasound came back normal, however, the doctor wanted me to come in to discuss the results as well as our next steps.  I pointed out if the results were normal then why did I really need to come in?  After yet getting more of the run around, the nurse finally called today and left me a message saying that I did not have to come in Monday for a follow up.  She reports she talked to the doctor and he agrees that I did not need to come back as from an orthopedic stand point, there is nothing he can do.  She did however say that the doctor once again feels that my leg could be due to something vascular and suggested I go back to my family physician and get a complete “full scan” in order to try to pinpoint why I am having such difficulty with my right leg. So yeah, basically back to square one.

The findings did report some abnormalities that should be followed up on so If anything, I will have my family doctor review all of my results and see what he might suggest. I also might email my heart doctor to see once again, if he can think of any vascular reasons that would cause leg pain.  Regardless, I am fried with this whole ordeal from that clinic and now my attention has to be on Asher.

Asher gets his tubes in both ears tomorrow. OK, I know it’s an easy procedure but I am terrified, more so than having to go back to the doctor for an angiogram!  This is my baby boy who is going to be put to sleep!!  All of the “what ifs” I think about when I go in to surgery, I now think about with Asher, and that is a lot harder to deal with. 

Yes, it’s a simple and common  procedure and yes it will only take about 20 minutes but this is my baby they’re going to take away from me for a period of time.  I am extremely thankful though that our small group leader’s wife will be one of the nurses in the room when Asher has the procedure done.  I have only known her for a little while but she is so sweet and sincere and Asher loved her when we took the kids over for our little holiday get together.  We are extremely thankful that Adrienne will be in that room with Asher when we aren’t able to because she will take good care of him.

So tomorrow all of my focus is on Asher, praying the surgery goes well and helps to prevent some of the constant sickness he’s been dealing with, not to mention hopefully improving his speech.

Appreciate all of your prayers for a successful procedure tomorrow, oh and that Asher survives not being able to eat first thing when he gets up! Yikes!! 🙂

And yes, that is Mr. Bean in part of the video haha!

I walked back in to the Sports Medicine Clinic today not really wanting to be there at all.  I at least had confidence that after my phone call from Carol last week with the disappointment in her office, that I would be in and out for my MRI….wrong!!  The nurse took my sheet that I filled out in regard to all of the metal in my body and then visited with me for a bit about the symptoms I’ve been having with my right leg.  He went back to the room to get things ready and then came back out saying “we have a few problems”.  I didn’t even respond and just looked at him.  He went on to say the first was an easy fix as the order was written for my left leg so he would have the doctor rewrite it.  However, I also needed to have labs done for the MRI and since they do not draw blood I was going to have to drive over to the hospital and then come back.  This did not fly with me and I knew I was just being tested again….and yep, once again I failed!

I instantly got upset and said I did not understand why this clinic had such a hard time getting my tests ordered.  I pointed out how extremely unorganized they were from the first appointment I had and questioned how the entire office can have such a poor lack of communication.  I explained I had just had the labs done at Covenant hospital along with the MRA, which was ordered from this doctor.  The nurse said they did not have those results and I once again said it was just done last week.  He went to go visit with the doctor then came back and said he had all of the paperwork from Covenant however not the lab report.  I basically told him if I had to leave to get blood drawn, I would not be back for the MRI….and he left again.  Shortly after, he showed me to the room and said they would get the results from Covenant…and I went and did the MRI!

As I was leaving he apologized once again and said he was sorry for getting me worked up.  I said “oh no, that wasn’t me worked up” then hesitantly thanked him and left.  I really hope I don’t have to go back there!!

I then went over to their other clinic to do the ultrasound of my leg.  After driving up and down the street for over 10 minutes and not finding the office, I called the clinic and realized the name was different.  I was able to drive right back to the clinic because it was indeed the big building I had been driving by and stopping in front of to try to figure out where it was.  It simply had a different name on the outside.  As I finished the ultrasound the nurse said the doctor will call me with the results later today, and then followed with saying if it was anything too serious she would not be able to let me leave, indicating she had not seen anything on the ultrasound that needs immediate attention.

So 5pm came and went but I did not receive a call from the doctor on any results from either test….so maybe tomorrow I will hear something.  Now I am back at that bitter sweet spot where the MRI is the only test left to show if something is wrong with my leg.  If that turns out okay then I am back at a stand still with not knowing what is causing the pain, however if it comes back that there is something wrong, then I am more likely faced with more tests and inconvienent appointments.

I did also get a call for my stents and am scheduled to go back in to surgery on Thursday February 26th.  Due to me being the most complicated case, I will be the first surgery of the day so I will be arriving early.  They asked me several questions about my heart then informed me that unlike going to interventional radiology like I always do, I will be going to the adult cardiac area to have the procedure.  I asked why this was and she said they would have more cameras and simply be more equip for whatever I might need during the procedure.  She also informed me that there will be three doctors.  I guess with three doctors, they can’t go wrong right?

And the last phone call for the day came from my pulmonologist in regard to a lot of questions I had about the progression of my disease, how fast it might be progressing and if I should be concerned that my stents in my pulmonary artery did not stay open longer than 6 months.  He began with saying I would need additional testing in regard to my “condition”.  He said as far as determining the progression of my disease, I would also need to do some more scans such as a ct scan to determine just how fast my FM is progressing as the last scan they had was from 2013.  He also said as far as my stents becoming narrow so fast, it could be from my FM growing, however he also said there are other factors to be considered but did not elaborate. They will not know for sure until they do the surgery and see.  Unfortunately this was a message left by him as I had missed his call but at least I know he is not ignoring me and is trying to find the answers.

So, no news on my leg, no news on my heart, but I am scheduled for my surgery and it is in the cardiac unit. This is different than I have done in the past, so it is hard not to be a little concerned about what they might find…or what they might be looking for.

I guess we will wait and see what tomorrow brings. By the way, whoever’s praying for me to have patience…please stop 😜