What a week it’s been…but a great one! Started out with normal kid stuff, work, cows and a doctor appointment.  Once Wednesday hit it was go time for Leah! Wednesday she had dance rehearsal followed by a three hour dress rehearsal on Thursday to prepare the girls for recital on Friday night and Saturday afternoon! Leah handled rehearsal like a champ knowing that once home, she would be eating cake and opening presents for her 5th birthday! 

 

 

Even her cousins Haley, Jace and Garret popped in to celebrate with us. 

And then Friday came around, the big night for showtime but first a day of work and school! Asher was really excited about his new shoes and while I was putting them on him, he decided to headbutt me…right in the eye and right on the bone. Of all times….it has to be on one of our busiest weekends! One reason plavix and kids do not mix as my eye instantly began to bruise!   

So yes, a black eye just in time for the recital! I soon forgot about the throbbing pain and horrific color of my eye though as I saw Leah up on stage! She looked beautiful and did all of her dance steps on cue! She was precious! Humbled once again at how truly blessed I am with the role of being a mother! 

Proud mom watching Skyler in band and volleyball, Nathan in orchestra and football, and now our little Leah in dance recitals! We are also fortunate that we have family close by so all the grandparents were able to come watch Leah…and boy did she love getting flowers! I told my father in law I wasn’t going to blog this but the pictures were too good and we are so thankful that Grandpa and Grandma Lalk as well as Grandpa Steve and Grandma Vicky were able to come. It really made Leah happy knowing they were all there just to watch her!  

  

Big brother Nathan and older sister Skye even got to enjoy the show! 

      

Saturday night Tim and I were able to stop in to wish his cousin a happy birthday as a surprise party had been planned…and it was a success! It was nice to visit with family and friends we haven’t seen in a while. We then cruised around on the Harley shortly before returning home to relax with the kids from such a busy week.

The weekend ended with a perfect Mother’s Day! Kids surprised me with gifts before church. Boys got me a hanging basket, Leah made me a keychain in school and most surprisingly Skyler who turned 15 a couple of weeks ago got me a very neat cross. It’s hard raising a teenage daughter and a lot of times I find myself doubting the decisions I make for her and wonder if I’m too hard on her at times. It’s been a little bumpy with us lately but it’s the little out of the blue suprises and moments like this that ease those worries…so proud of all our kids!

  
After church Tim and Asher went to have lunch with his mom and family. Happy Mother’s Day to my amazing mother in law and while I’m sorry I missed their celebration, I was happy to be able to spend the day with my wonderful mom. We went with Grandpa Steve and Grandma Vicky along with my niece Mary, out for lunch at Carlos Okelley’s. Thanks again for lunch dad!

  

Leah, Skyler and I then tagged along to go see my grandmas who were pleasantly surprised as we did not tell them we would be coming along with my parents. As we crawled in to the back of the car the girls got excited for a road trip! 

First to great grandma doris’…

And then to great grandma Ruth’s…        

Was great seeing so much of our family and friends over the last few days! Too bad I have to have a black eye in all the pictures but I guess it will make for a good story later on when the kids are older! Perfect end to a perfect week and now I’m going to bed 😉 Hope you all had a nice celebration with the mothers in your life! 

This is a little late but wanted to share some pictures from the great weekend we had. We were blessed with perfect weather and got the opportunity to take advantage of the sunny skies! Saturday started out with hitting up the farmer’s market followed by the art walk in Waverly. Think kids would have been happy just walking over the bridge 😉

 And the sidewalk chalk…leave it to Asher to commit vandalism instead of drawing on the actual sidewalk 😉 

 

We were able to finish up some things in the garden and even got our potatoes, watermelon and pumpkins planted.  

And asher watered the flowers!

Finally by Sunday the weather was warm enough that we were able to get the sprinkler out and have some fun! Asher absolutely loved following his sister’s lead!  

       

Topped the weekend off with a ranger ride…well me and Asher took selfies while daddy worked, followed by some kisses from the ponies 😉  

It was a busy weekend…but a fun weekend. These moments can easily be overlooked and taken for granted. It’s times like this where we need to live in the moment and cherish every beautiful day that we are given. 

While this was a good weekend, I did continue to have my “usual” symptoms, but it’s time to start focusing again, on what I can do, not what I can’t do. I don’t want to look back with regret, I want to look back knowing I gave it my all, that I took every opportunity that was given to me to show my kids the love I have for Jesus and the unconditional love I have for them…I guess I should say that goes for Tim too 😉  God is good…if you just let Him in 😉

So the last couple days of appointments didn’t go quite the way I hoped…but that’s ok. From my cardiologist’s view, I am bad but he has fixed me the best that he can.

He encouraged me that I need to keep pushing myself. He said yes, I will feel pretty lousy while I’m pushing myself and after I’ve pushed myself…but I won’t drop dead of a heart attack from trying. First off, where does he get the idea I’m not trying?! And with a tap on the shoulder followed by “keep the faith” the doctor left the room and my appointment was done.

As for my memory, they did a quick overview ct of my brain to rule out any tumors and to make sure I haven’t had a stroke, which turned out fine. However, I was still referred to neurology for a more detailed evaluation in regard to the forgetfulness I am experiencing. Just as well rule out one more problem from one more doctor.

As hard as it is to sit and hear some of these things from the doctors, it’s even harder to hear the man of your life pleading with doctors to understand how sick his wife is. Tim didn’t shut up about the memory issues and he also explained how rough I have looked the last few days along with my never ending cough.

It was hard seeing Tim forced once again to realize something I’ve known for all too long….there really is no cure and sometimes doctors can’t help me. I need to just learn to live with the symptoms but hopefully we can get the memory issues addressed at my next appointment. 

As discouraging as today and yesterday was, I am grateful for all the things I am still able to do. The Iowa City doctors really have done a lot for me and have improved my health tremendously!

It has been gorgeous weather so in between work and appointments, we were able to get out to plant in the evening and enjoy the night! We are working on making our garden bigger and better this year and have even tried a few new things! 

  
And while Tim tilled, I did help plant! It’s when the weeds start to appear that I might play my “sick” card and have to just watch him and the kids pull weeds while I “rest” Ha!

So, I know God’s plan is playing out and it’s time for me to “learn how to dance in the rain.” The last couple nights of beautiful weather, things accomplished with family…and lots of smiles…make it impossible to complain about anything. I truly am blessed!

   

 

Tomorrow I am off to Iowa City for a follow up in regard to the results from my heart monitor. I don’t know what to expect. The results showed abnormalities, but supposedly everyone has these arrythmias…yet I feel them a lot, they interrupt my sleep and my life. With my major health issues will they attempt some type of treatment or wait until I become worse? With the rare hypertension, treatment may not even be an option regardless. 

Is it time for me to accept this is the best I might ever feel? Will I spend a 4 hour round trip in the car just to be sent home with a sympathetic look from the doctor because he can’t help me?

To be honest, it has been a long week…and it’s only Tuesday. I am tired and it seems that once again, our strength and faith are being tested. I have failed miserably with my patience and it was the one day I didn’t take the first 10 minutes out of my day to pray. Funny how praying…or not praying can end up setting the whole tone for the day. 

And Tim is still working tonight, trying to get things done over at the farm so that he can be with me tomorrow. Of course it never fails that when he tries to get ahead of the game…well…one step forward, two steps back. Everything that could have went wrong for him today, did. 

This set him off into panic mode and frustration but surprisingly he was able to catch himself and be thankful as he knows things can be worse. I however, was left blaming myself for his struggles. If I didn’t have all of these appointments all the time, he wouldn’t have to bust his butt so much. (Ok, that just made me giggle because I thought of what his sisters Cathy and Brenda said last weekend about Tim’s work ethic as a kid…along with some very funny stories!) 

But really, he does works hard to provide for his family, nothing has come easy for us and everything we’ve been blessed with is because of his determination, hard work and simply by God’s grace. 

I have tried to talk him in to letting me go alone tomorrow, the quiet time might do me some good. But he wants to be there to make sure I ask the questions needed to be asked. Plus, he told me I looked like death yesterday so I think he has a few questions of his own! Ha! Compliments sure do change when the chronic illness comes out in a girl! 

So regardless, we know we are both being tested and we are trying to encourage each other to stay faithful with whatever God has in store for us.

BECAUSE…we do have some exciting things coming up, however, we aren’t able to share just yet, but very soon. And NOOOO, I am not pregnant!! The closer we get though, the trickier things seem to be so we just keep pushing forward and know that things will all work out in God’s time.

Thank you again for all your prayers and let’s see what tomorrow brings!

Last Sunday was national grilled cheese day and I was excited to celebrate by making that our Sunday night dinner…something quick and easy as I was still fighting fatigue and all of my nasty symptoms. But, God had other plans! 

Last Sunday, on the way home from chores Tim texted me not to worry about dinner. I was laying on the couch watching golf so I really didn’t argue with him! Shortly after, Skyler yells from upstairs for me to come up. I yelled back “why?” and continued to stay on the couch but Skye didn’t reply. Ok, I guess I better be a good mom, go upstairs and make sure everything is ok.

I went up and Skye was standing in the kitchen with a smirk. That smirk quickly faded and she says “go get dressed!” as I stood in my running pants and sweatshirt. I noticed the kitchen was clean and praised her but again she ignored me, asking why I had changed clothes. She shook her head and said “nevermind, it’s too late, we have company” then laughed and pointed out the window.

Angie, from our small group, was walking up to the door with dinner! I of course started to tear up by the pleasant surprise…and maybe a little embarrassed for being in my pjs already 😉 Angie went on to explain that Katie, another girl in our group had contacted everyone and it was set up that they would all be taking turns with bringing meals over to us this week! Of course I started to cry again 😉 Angie prayed with us then we enjoyed a delicious meal!

Now it all made sense…Matt, our group leader had texted me Sunday after church wanting Tim’s number. I later joked with him and his wife Adrienne, that I should have questioned him why he needed it 😉

It has always been hard for me to accept help but the thoughtfulness from our small group has been overwhelming. Yes the meals are wonderful but even better, they are praying for us and encouraging us more that they know.

Probably about 1 1/2 years ago, Tim and I had been praying for someone healthy to come into our lives, a prayer encouraged by one of our pastors during a sermon. Shortly after we began praying that prayer, we found out my disease was progressing and the strain of a chronic illness wreaked havoc on our marriage. We ended up going to talk to another pastor of ours and I thought wow, here is someone healthy in our lives. But, that was really only the beginning. Tim and I were encouraged to attend Financial Peace University through the church, which we did. 

We met a great couple at that class and to be honest, while we looked forward to learning the next steps to financial freedom, we were even more excited just to visit with Mike and Sally afterwards.

Tim and I felt like God was really tugging at us to continue making steps forward. We agreed that we both wanted to be involved with other couples who shared our beliefs and could also kind of hold us accountable with things in our lives including our personal relationship with God. 

We did some procrastinating, ok, a lot of procrastinating, always using excuses as to why we shouldn’t. BUT, after a few months, Tim and I finally filled out that one little form verifying that we were interested in joining a small group! Yikes!!

So needless to say, we joined a group which actually, two of the couples are neighbors to each other and they are both literally like two minutes from our house!

I had been nervous just for the fact that my “bible skills” are lacking and I didn’t want to sound stupid. I have always done daily devotions but I had really drifted from digging in and actually getting a better understanding of the bible, or making God a priority in my life. And while I do feel I have spiritually grown and put more focus on God over the last several years of my life, I will admit I was still doing it at my own will…when it was convenient for me and within my own comfort zone. 

It’s crazy how God works because that one argument Tim and I had, led us to talking to our pastor, which led to taking a financial class which in turn led us to some financial freedom and less stress in our marriage! 

Don’t get me wrong, our marriage is anything but perfect and we still struggle with being on a budget. We sometimes even take steps backwards whether because of circumstances or by our own doing, but thankfully God is right there to get us back on track. That financial class then led us both to take another step way out of our comfort zone…the small group…which led us to some amazing and HEALTHY people!  

We are both looking forward to what this next chapter in our lives might bring and we are even more excited to develop some great friendships that can also encourage Tim and I on our faith walk…and we hope to do the same for them or whoever else we come across! I just can’t believe I was so nervous to sign up 😉 

Sorry to ramble but anyway…;) It is by God that they decided to help us out when they discovered we were struggling, but I ended up needing the rest of the week off due to my procedure!! No better timing than to have delicious meals delivered for our family! They provided meals through Friday…which happened to be the last day I had to worry about restrictions! But, I guess God’s timing is always perfect and He always knows what we need and when we need it the most 😉

I continue to battle my usual symptoms, but I am feeling a lot better from my procedure. Even though they didn’t have to open up my stents, they still ended up going in, which resulted in an incision on both arms and lots of “digging” around in my chest. Thankful that the achy upper body feeling is starting to subside!

So again, thank you Matt and Adrienne, Dave and Angie, and Ryan and Katie! So extremely thoughtful and such a blessing. You truly have no idea how much you helped us out this week!  Asher’s face says it all as to how the family felt all week with such awesome meals and desserts!! 

 

We look forward to seeing you Tuesday!

Saw a new interventional doctor today since my original doctor, Dr. Youness left the hospital. I really liked him today and overall, not a terrible outcome.

I got set up for my venogram and then after explaining my symptoms, the nurses decided to prep me for intervention. I did tell them that I had these symptoms 6 months ago and my SVC stents had been open at that time, so I highly doubted they would be closed today. They prepped me anyway. An IV in both arms, oxygen and heart monitors along with a blood pressure cuff around my leg as they would be accessing my arms. I was wheeled into surgery and techs provided small talk while they explained what would be taking place. Nothing new to me, let’s get this show on the road. I did have to wear oxygen this time, however. I was then given meds to relax and meds for pain, and unlike my procedure last month for my pulmonary stents, these medications worked! And since the meds worked I didn’t ask why doctors were making incisions in both of my arms but instead I just admired the blue tarp like tent above me 😉 Soon I felt the slithering of the catheter going through my arms and I drifted in and out as they finished up. 

While cleaning me up, the doctor informed me that my stents looked good, they were open and therefore, instead of a 6 month follow up, I had graduated to not coming back for 9 months. I truly was grateful for this report! They got me back in to my regular bed to roll me to my room and the nurse said after 2 hours, I would be able to go home. Wait…what??

I questioned why 2 hours if they did no intervention but I knew the answer. She went on to say that since they had made the incisions and went in through my arms, they had to observe me for a couple of hours to make sure the incision sites were ok. I was instantly upset but didn’t say a word. 

Tim came back to my room and I simply said “I’m being nice” and he laughed, knowing my tone was proof that I would probably start bleeding from biting my tongue. Tim too said he had asked the nurse why my procedure took so long if my stents were open and she had told him it was for a learning experience. Have I mentioned how much I despise being “special?” Luckily the doctor came in to make things a little more clear.

The doctor started off by saying my SVC stents are open and after comparing with my previous reports, there was no significant change. He right away questioned my heart arrythmia and palpitations, asking if I see anyone for those. I informed him of all that has been going on with my heart symptoms and testing. 

He then began explaining why they had gone in to prepare for ballooning. He stated that when they put the dye in my arms, it took a lot longer for the dye to get to my right lung/right side of heart. They assumed my stents were closed so they went to perform angioplasty but found that my stents were indeed open. He very hesitantly asked if anyone mentioned pulmonary…and then he paused. I finished his sentence by saying yes, I have pulmonary arterial hypertension on the right side, high blood pressure in the artery that goes from my lung to my heart. He was then more eager to talk stating that the hypertension was the reason for the dye moving extremely slowly to my lung/heart. He also stated that the hypertension was higher than the last time they had done this procedure….whatever that means!

 He encouraged me to make sure I talk with my cardiologist because his main concerns were my heart arrythmia and hypertension. He went on to say that all of my symptoms I have been dealing with over the last several months, could most likely be due to the hypertension. 

He mentioned there might be medications to help my hypertension but after researching, in order to improve it, you have to treat the the problem that is causing the hypertension, therefore, I might be screwed. Ha! I took from our visit that the only way to improve my hypertension is to improve my FM as that is the cause, and nobody knows how to do that.

Oh, and the doctors did make an unnecessary extra incision (kind of, but they don’t really know how well the stents are working, unless they go in) so the nurse gave us free parking passes! Tim says for free parking they can give me as many incisions as they want! Deb, our nurse looked at me with sympathy saying what a nice husband! She is a regular nurse that has known me since I got my stents back in 2007. She is a riot and we like to go back and forth with each other. 

I also told her a 2 hour stay was ridiculous when they didn’t do anything. She agreed and told me to go so I got dressed and left! In the picture below, the two smaller white bandages in each upper arm is where they always go through for my procedure and then the green bandages were from my IVs. Crazy this is what a good report looks like for me! A lot to go through just for things to be fine!

 So, overall I am happy with the outcome today, minus some limitations and discomfort over the next few days to come. My SVC stents are open and I feel like I got some answers in regard to my symptoms, even though it means more testing and possibly more news I won’t want to hear. Thankfully though, God is still blessing me with better days than bad, and while these bad days the last couple of weeks have been hard to get through, I know that they will not last and better days are always just around the corner. 

Thank you to our parents and aunt Brenda for helping with the kids, to our small group for yet another great meal and most of all, thanks for all your prayers! Now it’s time for me to go to bed before the meds wear off and I get cranky 😉

 

So you know how my memory is an issue with me lately? Well it hasn’t improved much this week! The little things continued like putting the keys on the counter underneath the microwave, something I never do leaving me to search endlessly when it’s time to leave, or leaving the back van door open and my 4 year old pointing out that I didn’t close it, setting my glasses on the couch and realizing where I had set them…after I sat on them and caused them to bend so now they look goofy on my face, or walking away from the kitchen sink after I rinse off the dishes…only to leave the water running…and the list goes on.

This week I threw in a couple of new things “to spice things up” as Tim likes to call it. I decided to clean out the downstairs freezer on Saturday…and yeah, you know where this is going! Tim went in to get something today and walked in to quite the mess. While organizing the freezer Saturday, I realized we had about 3 pounds of expired meat. So, I had put that in a bag and continued to organize and whew, I got it done…pat on the back to me for getting something accomplished! Now it’s time to rest!

Apparently though, I put that bag of meat on top of the freezer…and forgot it there…and it was warmer weather Sunday and today! Yep, it thawed and I had even a bigger mess to clean up….a mess that could almost turn me into a vegetarian! So much for my pat on the back 😉

Also, tonight we were blessed to have someone from our small group bring us a meal, which I will be blogging about later in the week 😉 The meal was wonderful, however, Tim had to get last minute things lined up at the cow barn for tomorrow since he will be wasting a full day of beautiful weather to keep me company at my appointment. The kids and I ate then I put the dinner back in the oven so it would stay warm. 

Well, since I am known to burn things, I decided to check on it to make sure I didn’t have the oven too warm, and there on top of the casserole was the lid, shriveled up into a ball. Yes, I had put a plastic lid in the oven, which obviously I should not have done…and I honestly do know better! 

Tim was home shortly after and was able to enjoy a great meal we had been blessed with…and I had not ruined it!

While talking to mom I told her about dinner and she just laughed. I then pointed out that it’s a good thing I’m going to Iowa City tomorrow because the way this week has been, and it’s only Monday, my stents must be closed! Without hesitation, my mom quickly replies “you can’t blame stupid on stents!” I immediately cracked up and she immediately started apologizing! She even called me a few more times later in the night to make sure I knew she was kidding!

I know we all have our moments of forgetfulness and the busy of life can make for easy distractions but at the same time, this is a different kind of memory lapse, it’s hard to explain. My mom also knows, this is not my normal behavior, and that is why she too was quick to joke.

Tomorrow I go to Iowa City to check my SVC stents and again, I’m just not sure what I want the outcome to be. If my stents are closed, I would have something to justify my foggy memory and headaches and chest pressure. But if they’re open, which is ultimately what I always want, then that is great…but that also means back to the drawing board. This will just begin more testing, which is what my doctors have been discussing anyway due to my other symptoms. Either way, it’s all in God’s hands and in His time…so I need to put my trust in Him.

We truly have appreciated the meals provided by our friends from our small group and it has been beyond wonderful to eat dinner and then just relax with the family, to actually enjoy the rest of our evening! I have been able to put my little energy that I have, into time with Tim and the kids!

 Not only do Tim and I appreciate the break from cooking…but I think our kids are enjoying it as well 😉 Skye would have a fit if she knew I posted this but that’s what she gets for being silly over brownies 😉  

Ok, have you all seen that show Toddlers and Tierra’s? That is how Skyler and I felt today! First off, I grew up doing sports such as volleyball, tennis or racquetball, golf, etc…so give me knee pads and a volleyball, I can handle that! But Leah…is in dance! A whole new world to me!

Today was our first experience with dance pictures and a big shout out to older sister Skye for doing it all!! While I love going “girly” once in awhile by doing my hair, makeup and getting dressed up, I have no style and no ability to do hair! If my hair is curled in pictures…that means Skyler did it! 

So anyway, back to Leah. I first found out that you never wait until the last minute to buy what you need for pictures, that has never worked, so I don’t know why I thought it would work today! Then, once home, I also found out that 20 minutes does not allow Skyler enough time to curl Leah’s hair… 

Or do her makeup…  

But, after Skyler and I snipping at each other and rushing around to make sure we had tights and shoes and hair pieces, it all worked out! Leah looks beautiful…oh but her red hair piece…I honestly thought it was a bow tie that went around her neck! Haha!    A first experience with dance pictures and I learned a lot! Now if we can make it through the recital next month we will be good! 

Thank you Skyler!!! And thankful for such a beautiful day to spend with my girls! #blessed

I hit another rough patch and I think my illness was getting to Tim this week as well. The stabbing chest pressure shooting through to my back, the pounding headaches, the overall body weakness, not to mention the extreme fatigue I just can’t seem to shake. Probably because I can only sleep no more than 2 hours at a time before the discomfort of laying down kicks in! I am getting the chills with sudden attacks of sickness but it doesn’t seem to be a flu bug as it tends to just come and go unexpectedly. My blood sugars are a complete disaster because of all the strain on my body…What is happening to me?

It’s a battle every day to get my work hours in and I am extremely grateful to be able to work from home at my own pace. However, by the time my hours are in for the day, I am exhausted and I am fighting to stay awake until the kids go to bed. 

I am fixing dinner then skipping meals to sleep while everyone eats, nothing tastes good and just makes me sick. I help clean up then back to the couch I go while the kids play with dad. Once bedtime comes I put Asher down then go to bed again, leaving Tim to get Leah and Nathan settled in…these unfortunately were my good days this week.

The last couple of days I have been down right useless. Tim is working then coming home to take care of the kids while I work. Once work is done for the day, I find myself on the couch or even better, up in bed. Tim is even cooking, cleaning house and doing bedtime routines…all while I just lay in bed…and if I can’t sleep, which is usually the case, I think…and cry.

I finally broke…at Tim’s expense. He simply made the comment that I should get out of the house, get some fresh air and that will help me. Did he really just say that out loud to me?! Yes, he did, he said it twice! The last week of frustration, insecurities and anger over my disease that I had been consumed with, came spitting out at him. 

Sarcastically I replied “all these years I’ve wasted going from doctor to doctor, getting stabbed, poked, prodded and yet the cure is so simple…fresh air! I just need to buck up and do something! Boy am I stupid!” My anger then turned to defeat and the tears began to flow. 

I continued to remind Tim that over 6 months ago, I went to the doctor because I felt awful, deathly tired, pounding headaches, palpitations, my messed up head because I don’t remember anything…the only thing out of that appointment…it led to more appointments and no answers! “What makes you think I feel better? Oh and by the way…my flipping leg still hurts!” 

Without skipping a beat, Tim simply suggested I go get a taco!!! And the “fresh air” was really the grocery store. Haha! Now I can laugh about it but at the time I wanted to scream at him “what is wrong with you? You don’t have a clue!” But, Tim knows me better than anyone. He knows it takes a lot for me to break so when I do break, that scares him because he knows I must be feeling pretty awful. The worst thing in the world for a spouse is seeing their “other” half going through something so difficult and feeling helpless. Tim can’t “fix” me and that kills him inside.

These are the blogs I find hardest to share. How do I expose my bad days then turn around and expect others to believe that I am fine the next day when they ask how I am feeling? Do I not share these and stick to a journal just for myself? 

But then I think no, I should share this. This is my disease, this is anyone living with a chronic illness! We have bad days, bad nights and bad moments, but we also have a lot of amazing moments! I can vent out my frustrations in a blog, which surprisingly really helps me…then I can move on to fight another day! 

And after some rough days, today was an awesome day, a day that makes the bad days worth it! We all spent the day as a family doing work around the farm, catch up for Tim since he has been taking care of so many things around here! The weather was beautiful, the kids did awesome with helping out…and no complaining, even though the day turned out a lot longer than planned!    

 

And while I was extremely exhausted, Tim and I were still able to go out to dinner for date night! Something we haven’t done for awhile so it was well past due! Away from the craziness of life, just us as a couple…no talk of cows and no talk of sickness.

Today was truly a day that I am extremely grateful for…a day much needed to remind me what my fight is all about.

  

I was searching some things in regard to my disease tonight and came across one of the first FM sites I joined about 8 years ago. Unfortunately, it is not an active site anymore, however, if you go under patient stories you will find me as Rebecca about half way down the page. It’s a picture of me and Skyler at the Waterloo airport. We would sit and watch the planes come in and take off, something she absolutely loved to do after we had spent the day at the beach out at George Wyth! 

I later found out that Tim had actually worked there at the time Skye and I would do this…it’s crazy how Tim and I had so many chances for our paths to cross! Lucky for him…our paths did finally meet. Haha!

Anyway, so many of the stories posted here are very similar. My entry, I actually posted right after the doctors told me to get arrangements made for Skyler because I was dying. In my post, I talked about going back to see a surgeon but he would also tell me there was nothing he could do for me. I actually saw a few more doctors who told me “it’s a horrible disease, I’m sorry, there is nothing we can do,” before I found one who had heard of my disease and was able to put 4 stents in my SVC!!

I didn’t put all that detail in the post but I did do a follow up entry on my successful procedure.

I found this very interesting to read because as much as I was trying to be positive and keep my faith…I was terrified with what the reality of this disease could mean. 

I had over 10 doctors tell me I was dying, they strongly encouraged me to make arrangements for Skyler. I can see the specific doctor’s face, like it was yesterday, asking me who was going to take care of my daughter, urging me to make that a priority. I said I was going to take care of her… and I am still here today doing just that!

No matter how bad the situation might be, no matter if anyone else provides encouragement, never give up hope and never stop fighting. God is good and I am so thankful for how far He has brought me! Here is the site…

http://www.thefmfoundation.org