Can you believe I’ve been blogging for almost two full years?! Wow, that’s a long time of sharing our lives with you! And while the support has been absolutely overwhelming, I think it’s time for me to take a break from writing…at least publicly that is. And don’t get me wrong, I will update on my health but only if something drastically changes…just won’t be as consistent with blogging as I have been in the past.
The whole intention of me starting a blog was due to the fact that I had some new issues arise with my fm. I knew the process would be challenging, to say the least, in order to figure out what was going on with me. I wanted to show what it’s like when diagnosed with a rare disease, and the many obstacles and testing and appointments…the discouragement…yet the hope, that comes along with trying to find answers. While I continue to face ongoing challenges, God always sends something to put a smile on my face so I hope I have accomplished what I set out to do!
And the funny thing is, it wasn’t too long before I started blogging that I was writing in regard to my leg pain!!! Haha! Hey, two years later God has blessed me with at least one answer! That’s a start!😉
Unfortunately, with the other initial issues I had written about, I thought I would have had those answers as well and been more stable by now but that is not the case. In fact more issues continue to come up…but they are my “typical” issues, if that makes sense?!
While the recent MRI of my back resulted in me having emergency back surgery, I am still continuing to struggle with some pain and numbness. I was under the impression this was to be expected but after my follow up appointment today, no…it’s not. I have given up my pain pills due to them making me extremely sick so this is possibly why I may be noticing more pain. At least that is my hope! If I am not better by Monday, I need to call the doctor and they will schedule another MRI of my spine to see what might be causing my reoccurring symptoms. Not excited about that…
I am also back to walking “weird” according to Tim and Skyler. I am definitely not walking tall anymore but I am still praising God that I am at least walking and the pain is nothing like it was before my surgery!!
I will admit though, I hit another weak spot today and when I came out of the doctor’s office I was frustrated and started to tear up, telling Tim I was sick of it all, sick of not getting better. After 7 years, Tim has learned he’s better off not talking during moments like this!😜
Instead, his response to my cries is to turn up the radio and rub my back in efforts to comfort me as I keep my face turned away from him…my pathetic attempt to hide my vulnerability. But his silent gestures definitely say more than enough and then the first song we heard on the radio was playing at my favorite part…
The MRI findings also showed that I have what appears to be a very large cyst on my right ovary. I was encouraged to follow up with my other doctor in regard to that, which I did. I was confident it would be no big deal because back in May an ultrasound I had done also showed cysts so I had underwent surgery to take care of all the female issues I had been dealing with.
This, however, is a new cyst that has grown very large on my right ovary in just the last few months and the other cysts noted back in May had been on my left ovary. Needless to say I am scheduled for another ultrasound.
I will also be seeing my heart doctor in a few weeks as well to monitor and address the new heart symptoms I have had since December…basically the same ole story for us. But, for those of us who struggle with something so rare…this is the life we live. Our bodies think they are protecting us but in reality they are destroying us. One health issue to the next…a chain reaction in which one problem triggers another problem.
With that being said, I have given you some clear pictures of what my good days look like…and a glimpse in to surviving a bad day so at this point, I do not feel like I need to continue blogging in regard to the regular “routine” symptoms and appointments.
It’s just that with our situation “burn out” can happen and I don’t want to get my readers to that point…especially our friends and family. While my illness is extremely serious, I have been living it for 14 years…7 of those years Tim has been living it too. It gets frustrating, exhausting and the seasons get long…VERY long.
So, Tim and I have no choice but to manage and learn how to live with the different level of challenges we face on a daily basis. Some days better than others but we are faithful in prayer and trust that God is answering our prayers the way that He sees fit…even though sometimes I don’t understand and wish He would have answered them differently! And some prayers we are still waiting on but He knows what is best more than what we think is best…and here was the next song that came on after Danny Gokey…
Okay God!! I hear you!! I am listening and trusting…and working on obedience!!!😉
I seriously cannot express the gratitude I feel for all of the prayers and support and willingness to help…even from those we don’t know! You have all provided us tremendous comfort during some of our tougher days!
And while the response has been so overwhelming, I do hope you can all understand that for now, I think it’s just best to take a break from blogging. Tim and I have been in a tough season for the last few years and it looks to stay that way for awhile but we are surrounded by amazing family and friends! God’s Grace has held me up for the last 41 years…and I trust that He will get me through the next 41!😍
I will definitely stay in touch with my health updates but please feel free to continue and contact me through email, Facebook or Twitter! I am always up to chatting and answering any questions and I love getting to know all of you!
Oh, and hey speaking of that…remember to tell others about my book, I’ll Take My Disease Rare Please, as well…and seriously people…between twitter, Facebook and my blog, I have over 600 friends/followers yet only 14 reviews on Amazon???
C’mon…please just take a few minutes out of your day to give it five stars…you don’t even have to comment!😜😍😂
Then there are these wonderful ladies! My wonderful mom, my favorite aunt😉 and a few of their crazy cousins!! Beyond blessed with such loving family and friends!😍☺️ And PLEASE continue to keep Aaron and Cathy, my amazing brother in law and sister in law in your prayers as well! Their faith and sense of humor throughout their own cancer journeys have been a tremendous encouragement to me!! So, sorry Lalk’s but love you too and I’m one of you!😜😬 Each and every one of you has reached out to me with verses, songs and words of encouragement when I needed them the most so had to share the only pictures I have!!😍
And can’t help but love this picture from a few years ago even though Aaron might hate it. He was the first person I knew so close to be diagnosed with cancer. Very difficult to see but at the same time, God has His hand in all of this and from an outside view I can see Him working in and through Aaron and Cathy…the Lalk’s have faith that will not be shaken!!
Love to you all!!!!