How sweet it is to be seizure freeeeee! 16 days seizure free, that is!!!! I have NO idea how long it's been since Mike's gone that long.
I should stop there, because that is the BIGGEST thing going on in our lives right now . . . . but I'm never at a loss for words. ahem. Sunday I take off for a week of vacation with my mom and sister. I am very excited, and so many Cincy friends have stepped up to look in on Mike and cook for him - he may be sad to see me back, he's gonna eat so well! With our break in the seizure action, my anxiety has actually gotten worse. I want desperately to hold on to this. As we know, this thing has been on again off again and the last round we were "on again" I wasn't sure I was gonna make it through. There is so much anxiety that it will get that bad again. I'm just waiting for us to crack under life's tremendous pressure when I should be at peace about seizure free days. I've lived for so long waiting for the other shoe to drop and this has given way to anxiety. I'm trying, friends - trying to pray through it, trying to trust through it, trying to be thankful and enjoy every seizure free moment. My hope is the vacation will be restoring and relaxing and Mike will be fine while I am gone . . . I'm choosing to trust he will be.
Signing off for a week or so. Be blessed, friends.
Becka
Thursday, March 24, 2011
Sunday, March 20, 2011
Let's talk numbers!
12 - Mike has been 12 DAYS/NIGHTS seizure free!!! I'm not sure when the last time is he's gone that long, but that means rest . . . for both of us. I continue to struggle with anxiety at night and wake up during the times he typically seizes or lie awake waiting for it. I've prayed about this, tried different things to get over it, but it lasts. Prayers for my anxiety are appreciated.
7 - In 7 days I am going on vacation with my mom and sister. We are headed on a Disney cruise! Mom is taking us to celebrate Liz's graduation and my birthday. She's saved up her Disney points and we are off for a week! I'm SOOOO looking forward to vacation and time with my family. Mike will be here, with people checking in on him daily and family a few hours drive away should he need anyone. The recent seizure free days bring me hope he will be okay while I'm gone. I have mixed emotions about leaving him, but everyone assures me I should go.
5 - We spent 5 hours in the ER this week, weary of appendicitis. After fluids, a CT scan with barium, and a diagnosis of "just a virus", we were on our way home. This is a record SHORT time in the ER for us!
3 - We now have 3 months of mortgage in savings. Last time I wrote, we had 2. With Mike being unable to work and my salary not being quite enough to pay all the bills, we have drained savings, and have lived on God's grace for almost a year.
1 - In 1 month Mike goes to NIH for a free study re: his endocrine issues. He applied and was denied about a year ago, and we are thankful he has been accepted. The recent MRI he had at Ohio State showed some growth of the pituitary tumor, but you will remember that every doctor we have seen has said the tumor is very tiny and cannot be affecting anything. NIH will offer another opinion about this.
0 - I have 0 things to complain about, because I am blessed, seriously and wonderfully blessed.
Love and thanks to you all for praying and supporting us, friends!
Becka
7 - In 7 days I am going on vacation with my mom and sister. We are headed on a Disney cruise! Mom is taking us to celebrate Liz's graduation and my birthday. She's saved up her Disney points and we are off for a week! I'm SOOOO looking forward to vacation and time with my family. Mike will be here, with people checking in on him daily and family a few hours drive away should he need anyone. The recent seizure free days bring me hope he will be okay while I'm gone. I have mixed emotions about leaving him, but everyone assures me I should go.
5 - We spent 5 hours in the ER this week, weary of appendicitis. After fluids, a CT scan with barium, and a diagnosis of "just a virus", we were on our way home. This is a record SHORT time in the ER for us!
3 - We now have 3 months of mortgage in savings. Last time I wrote, we had 2. With Mike being unable to work and my salary not being quite enough to pay all the bills, we have drained savings, and have lived on God's grace for almost a year.
1 - In 1 month Mike goes to NIH for a free study re: his endocrine issues. He applied and was denied about a year ago, and we are thankful he has been accepted. The recent MRI he had at Ohio State showed some growth of the pituitary tumor, but you will remember that every doctor we have seen has said the tumor is very tiny and cannot be affecting anything. NIH will offer another opinion about this.
0 - I have 0 things to complain about, because I am blessed, seriously and wonderfully blessed.
Love and thanks to you all for praying and supporting us, friends!
Becka
Wednesday, March 9, 2011
What goes up, must come down
After my "I can't do life anymore" post last week, I felt like Mike and I were as low as we had been in a very very long time. We were both sleep deprived and seizures were more frequent and intense. There was an overwhelming and crushing blow that the very difficult withdrawal Mike and I have lived since December, resulted in more seizure activity when we had hope that coming off the medication would perhaps be the answer. It not only was not the answer, things got worse! Talk about getting hit while you were already down. It's no secret I have battled hopelessness throughout this journey and the fact that I had put my hope in this small chance for an answer . . . . it was a smack in the face - I fought against the "Why do you bother hoping - it gets you nowhere every time" lie in the depths of my heart.
Mike left last weekend to go to Columbus - Ohio State - as their neuroendocrinology reputation is stellar. He, unfortunately, could not see one in the hospital. He was told it was not a life or death situation and therefore could not see one. You'll remember that Mike has yet to see a neuroendocrinologist. Our hope is that someone who has knowledge with the endocrine system (which is the only test that has shown anything is wrong with Mike) as well as neurology, will put together the endocrine issues (pituitary and adrenal glands) with his neurological symptoms. Mike was given an appointment in June but got a sooner appointment at the end of this month at the Cleveland Clinic. Mike has family in Cleveland.
Perhaps as the old saying goes, "what goes up must come down", the opposite may also be true. What was so far down last week, has come up. Here are some answers to prayer:
Mike has been accepted by the NIH to be a part of some medical studies that pertain to the endocrine system. He will see a neuroendocrinologist as a part of the study. Because this is a study, there is no charge to us. They may even pay for travel. This takes place in April. The exact date is TBD.
Mike has been in Cleveland with his family which has allowed me to sleep at night. What is comical is that the times Mike seized at night I am automatically waking up. I do love my routine. Ha! He will return home Friday.
Mike was taken off the Depakote (seizure medicine) as it had too many side effects. He has gone from 6 medications to 4!
Our mortgage is paid through May. We had $270 to pay our mortgage due April 1st and were trying to sell what we could to help pay for this. I was thinking about how sad it would be that on my birthday, I couldn't make my house payment. God was, and remains, faithful to us in providing funds to pay the bills. Mike has also applied for temporary disability. He was denied the first time and has applied again. Some of you have asked why we don't sell the house and move closer to family. This is complicated for 2 reasons. I would have to have a contracted teaching job before we could consider moving as we have to have income and health insurance. In this economy it is difficult to find a job, and I would have to retransfer my teaching license as well as fly back and forth for interviews. We would also have to sell our house which would be difficult in this economy. Our house also presents complication because when we bought it, the previous owners did not disclose some information and our basement is cracked all the way around. It leaks terribly. We would most definitely need to have this fixed before selling it. So, as easy as it sounds to move, there are many factors. Not to mention we really like Cincinnati and have friends here and love our house and neighborhood. To give this up would feel like yet another loss.
On a final note, I spent some much needed time with the Lord Sunday. When I get low, I feel like David - pleading with the Lord to "show up" . . . . and He always does. I read about trials and saw things in a new light. I also listened to a sermon online and there were many things that stood out to me, but this is what hit me the hardest - if you have long time unmet expectations of the Lord, it's because He is trying to exceed them. And that, my friends, is sweet.
Love and thanks and blessings to all of you for all that you are to us . . .
~Becka
Mike left last weekend to go to Columbus - Ohio State - as their neuroendocrinology reputation is stellar. He, unfortunately, could not see one in the hospital. He was told it was not a life or death situation and therefore could not see one. You'll remember that Mike has yet to see a neuroendocrinologist. Our hope is that someone who has knowledge with the endocrine system (which is the only test that has shown anything is wrong with Mike) as well as neurology, will put together the endocrine issues (pituitary and adrenal glands) with his neurological symptoms. Mike was given an appointment in June but got a sooner appointment at the end of this month at the Cleveland Clinic. Mike has family in Cleveland.
Perhaps as the old saying goes, "what goes up must come down", the opposite may also be true. What was so far down last week, has come up. Here are some answers to prayer:
Mike has been accepted by the NIH to be a part of some medical studies that pertain to the endocrine system. He will see a neuroendocrinologist as a part of the study. Because this is a study, there is no charge to us. They may even pay for travel. This takes place in April. The exact date is TBD.
Mike has been in Cleveland with his family which has allowed me to sleep at night. What is comical is that the times Mike seized at night I am automatically waking up. I do love my routine. Ha! He will return home Friday.
Mike was taken off the Depakote (seizure medicine) as it had too many side effects. He has gone from 6 medications to 4!
Our mortgage is paid through May. We had $270 to pay our mortgage due April 1st and were trying to sell what we could to help pay for this. I was thinking about how sad it would be that on my birthday, I couldn't make my house payment. God was, and remains, faithful to us in providing funds to pay the bills. Mike has also applied for temporary disability. He was denied the first time and has applied again. Some of you have asked why we don't sell the house and move closer to family. This is complicated for 2 reasons. I would have to have a contracted teaching job before we could consider moving as we have to have income and health insurance. In this economy it is difficult to find a job, and I would have to retransfer my teaching license as well as fly back and forth for interviews. We would also have to sell our house which would be difficult in this economy. Our house also presents complication because when we bought it, the previous owners did not disclose some information and our basement is cracked all the way around. It leaks terribly. We would most definitely need to have this fixed before selling it. So, as easy as it sounds to move, there are many factors. Not to mention we really like Cincinnati and have friends here and love our house and neighborhood. To give this up would feel like yet another loss.
On a final note, I spent some much needed time with the Lord Sunday. When I get low, I feel like David - pleading with the Lord to "show up" . . . . and He always does. I read about trials and saw things in a new light. I also listened to a sermon online and there were many things that stood out to me, but this is what hit me the hardest - if you have long time unmet expectations of the Lord, it's because He is trying to exceed them. And that, my friends, is sweet.
Love and thanks and blessings to all of you for all that you are to us . . .
~Becka
Thursday, March 3, 2011
no answers
Mike's EEG showed nothing - shocking. He is having the MRI of the pituitary tumor tonight and will probably be discharged tomorrow. Another wasted trip, another stay of no answers, and a big question mark of where do we go from here???? He couldn't see a neuroendocrinologist until June at OSU. He can see one on March 23 at the Cleveland Clinic. He was taken off the Depakote (seizure med) as it was having too many side effects, and the doctors agreed they wanted to see what Mike's body would do off of both medications. The questions we have to answer now are: where does Mike stay until the 23rd? He has family in Cleveland. If he comes home, how do I manage the seizing sleepless nights and working full time as we are barely staying afloat financially (only by God's grace have we sustained our house and not declared bankruptcy)? If the seizing continues, what is the long term plan? Where do we go from here and where is God???? That's what I really want to ask. Where is He? What is He doing? And does He realize that I am at a very large breaking point of not being able to do life anymore?? DEEP DEEP down in my heart, I know He's there. I know b/c you are all praying for us. I know b/c my bills are paid. I know b/c He's promised to be . . . . but I still ask "Where are You?"
Thank you for the prayers, encouragement and constant phone calls. I'm so sorry I haven't returned many - it is a blessing I haven't b/c I've been overwhelmed by how many of you have called. Blessings to you all. Hug your family tonight. Be thankful for everything. Don't forget us - we need prayer desperately . . . .
Thank you for the prayers, encouragement and constant phone calls. I'm so sorry I haven't returned many - it is a blessing I haven't b/c I've been overwhelmed by how many of you have called. Blessings to you all. Hug your family tonight. Be thankful for everything. Don't forget us - we need prayer desperately . . . .
Tuesday, March 1, 2011
back to the hospital
Mike finished his withdrawal, and what we hoped might be the answer to the seizures, only brought more heartbreak. This weekend and through today Mike has had many seizures, among other symptoms. He is headed back to the hospital tonight. A good friend of ours is taking him to OSU hospital, a 2 hour drive, as I am so worn out emotionally and physically. This weekend has taken a toll on us and we are ready to be done. Mike is saying he wished I didn't have to take care of him anymore and this breaks my heart in so many ways. I'm so emotionally spent I can't imagine doing this anymore, not one more day. I'm all done. We both are.
Please pray Mike gets admitted to OSU and he is able to see a neuroendocrinologist. Mike has 2 ongoing issues - neurological and endocrine - thus far we have seen no one who has looked at these issues as connected. We are hopeful someone at OSU will. Mike's family, who lives in Cleveland, is meeting him at the hospital tonight. I, or my family, will keep you updated.
Thank you for praying - it is always enough.
Becka
Please pray Mike gets admitted to OSU and he is able to see a neuroendocrinologist. Mike has 2 ongoing issues - neurological and endocrine - thus far we have seen no one who has looked at these issues as connected. We are hopeful someone at OSU will. Mike's family, who lives in Cleveland, is meeting him at the hospital tonight. I, or my family, will keep you updated.
Thank you for praying - it is always enough.
Becka
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