Funny how on this little blog I never hesitate to post when I'm happy, or when I feel good, or when something comical takes place because of this disease. But, for some reason, when it comes to posting the hard things, or the more personal issues I face with this, I second guess making a post. I talk myself into it, then out of it, into it, then out of it. I guess I never want to appear like I'm whining, complaining or being a baby about the whole thing. I know first hand, that there are definitely a lot of things harder in this life than living with MS. However, the whole reason I felt inspired to start this blog was to share everything about just that......living with MS. When I was first diagnosed back in March, I came right home and searched the web over hoping to find someone to relate to, rather than just info about Multiple Sclerosis. I wanted to see people. Pictures. Faces. I guess I was hoping to see that they were fine and living a normal life, as much as possible. I wanted to read their stories. How they found out they had it. What shots they were taking. If they had children with the disease. I wanted to know what life was like for them since the diagnosis. I searched, only to come up short. There are hundreds of sites that will give you all the info you can digest about MS. But, very few had real stories. So, with that in mind, I will share with you the latest in my journey, in hopes that it finds its way to someone else searching for the same help.
I am so glad I published the last post about finally feeling close to 100% healthy again, and being grateful for it. Because, I am quickly realizing those days are far and few in between. Yes, I look ok, nothing real physically noticeable. But on most given days, something is going on inside that is not visible. Since my last post, I have had a couple of days with tingling sensations in my arms. I had a horrible migraine accompanied with nausea on Saturday night. I was in Kaysville at the time and couldn't even drive myself home. I ended up on my sweet Dad's sofa for 2 hours before I could get up and get home. It knocked me out. Is this MS related? Not sure. National MS website says the possibility of it is very high. Usually a sign that the body has over done it and needs to rest. So, I took Sunday off. Stayed in bed most the day. My little Tyler was worried about me. Trav said he came in crying while I was at my dad's wondering if I was ok. Sunday after church, he climbed up in bed with me and handed me a card. He had gone off, all to himself without any prodding from anyone else and wrote me the cutest little card. Truly heartfelt. It made my day. I'm sure my kids have many questions, but don't quite know how to ask. It's hard to know how much to share with them as well. They know I have MS and they also know and feel that it has changed the dynamics of our home a little.
Now, for the more Personal issue. The last couple of days, I have felt sure that I was coming down with a bladder infection. We women know exactly what they feel like and the symptoms that come with it. So, without going into further detail, I have been experiencing these symptoms and decided I should call my O.B. to get checked before it got worse. Before I did though, I called my MS confidant Anna and asked her if she has had many of these, and if our Dr. H. had anything to say about them in relation to our MS. She gave me some insight, but still thought I should call my Doc. too. (Thank you Anna for being there for me!) Long story short, I went in to my other hero Dr. H. (Whom, aside from my Heavenly Father and my husband, I give huge credit to for the fact that we even have children. But that's another post for another day and place!), gave the sample and waited. The nurse quietly turned around to Dr. H. and whispered, "Should I send it in for a culture? It came back negative for infection." Dr. H. then came over to me and asked what my symptoms were. As I described them he said they did match that of an infection, but that my results were negative. We then discussed how this could be part of the MS and that the connections aren't being made to completely release everything. There......that's about as personal as it gets! TMI, I'm sure. Anyway, feeling pretty silly for wasting everyone's time I got up to leave. He told me if it got worse I could call him, but he recommended calling Dr. H. my Neurologist. I loaded Julia and I into the car, got down the road and sobbed the rest of the way home. I was truly hoping to go there, find that I had an infection, grab the prescription and get on the road to recovery. Instead, I walked off with the realization that this is really happening. MS is in there reeking havoc all over the place and there's not much I can really do to stop it. There isn't a quick fix for this one. Heavenly Father was mindful of me today, and answered my prayer through my dear friend Heidi, who showed up with lunch for me and my little Sis. (And no, I'm not always praying that someone will show up with Chocolate Covered Cinnamon Bears or lunch! :) Just comfort!) Thank you Heidi, you cheered me up. That in the long run was better than any medication. I am feeling a little better tonight, so hopefully that is a good sign.
Hardest part of all of this is the unknown and figuring out how to listen to my body. I'm hoping within a couple of years, I'll have a good system down and can keep from experiencing some of these little things, just by being a pro. and knowing this new little partner of mine better. These early stages are the pits some days. Good night.....here's hoping for a better tomorrow!
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6 comments:
Sarah~ You are brave and you are tough. This blog needs to be a place you can post whatever is in your heart and mind. Don't ever worry you are complaining or whining, and if you are... who cares, it's ok to do that ya know, because it is the pits! Please know that prayers are being sent your way. Franklin Family loves you. :)
The hard stuff is important. It lets others', even those without MS, feel normalized in their moments of hardship. It's always good to be real:)
And...on a different note...I am so glad you shared this info, private as it may be. I had the EXACT same thing happen a few weeks ago. I thought it was nuts. The mysterious "infection" went away as quickly as it had come (after a few miserable days). I had "read" issues like that can happen, but just kind of blew it off. Comforting to know I wasn't crazy!!:)
The card is very sweet that your son wrote; you must have great kids!
Sarah Burke--giving TMI is just you, thats why soooo many of us love you!!! Thats Sarah, and not one of us would change you:) Please continue to share all the highs and lows, the ins and the outs, those that love you are the ones that read this and want to know how you are. I so apologize for not texting more when all you said was you are ok, I knew something was up but didn't push anything, I'm sorry for being caught up in my own little world that day. Please forgive me. Love you sweet girl, and remember I am always in that corner cheering you on:)
IN CASE ANY OF YOU ARE WONDERING I HAVE THE MOST AMAZING WIFE ANYONE COULD ASK FOR. SARAH YOU HAVE SUCH AN AMAZING WAY OF SHARING YOUR THOUGHTS AND FEELINGS, YOU HAVE SUCH A POSITIVE ATTITUDE ABOUT LIFE. I RARELY HEAR YOU COMPLAIN OR MURMUR ABOUT ANYTHING.
I ALWAYS FIND COMFORT WHEN TIMES GET TOUGH, WITH THE WORDS "THIS TOO SHALL PASS" AND I DON'T KNOW WHEN OR HOW, BUT I KNOW "THIS TOO SHALL PASS". UNTIL IT DOES I WILL BE BY YOUR SIDE HELPING YOU FIGHT, UNTIL WE CAN'T FIGHT ANY MORE. I LOVE YOU.
Sarah I love you too! We will have a steam party soon. When I grow up I want to be just like you!!
Hope it gets better soon! Thanks for being real. It is hard to do that sometimes. Todd tells me I always minimize things. I'm glad you are willing to share. Bladder issues are NO fun.
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