Songs That Save

First thing's first. I haven't written in a while so I just want to let you know that we are doing well. Me?  No seizures since the one in May. I still struggle with headaches and getting enough sleep and trying to find some kind of regularity in my energy level but for the most part I'm OK. Oh, and I battle lots of memory issues like word fishing and name/face recognition and such but post-it notes are my new best friends.  Bob?  He's been struggling. Losing both his parents in a 3-week span of time this summer was hard for him. Also, he's lost a lot of muscle strength and partial use of one arm due to the progression of his Muscular Dystrophy. Thankfully we have a great support system in place and his social worker and doctors have really been a force for the positive in his (our) life. Also, there is a local artist that is using Bob and his life (as well as others with disabilities) as inspiration for his new show. We will keep you updated on where and when that will be when the time comes.

Now to the reason I'm writing today. When I was in my teens and early 20's (and 30's) I was a bit... melancholy and angsty. Oh yes I was!  I know it's hard to believe but it's true. It probably didn't help that I had untreated depression for many of those years either but let's just say I was a hot mess of emotions and leave it at that. Anywhoodle, one of my favorite remedies for the angst was music. I loved (and still love) complex music with inventive production and literary lyrics or simple, folksy music with poetic lyrics. I worked in Christian radio and one of my jobs was to listen to all the new CDs and mark them for play. I found the best music that way. I really loved artists that were Christians but didn't sing "Christian" music. They wrote and sang music from their heart that appealed to me as a fellow Christian. Get the difference?

I loved Margaret Becker, Kim Hill, Carolyn Arrends, Sarah Masen, Wes King, Mitch McVicker, Rich Mullins, Steven Curtis Chapman, and Charlie Peacock. CP was among my favorites. I discovered him via his CD Secret of Time in 1990 or '91. I devoured that CD. I memorized every song. Then I bought everything he'd ever done up to that and everything he did after. So many of his songs spoke to me on a personal and spiritual level. There are a couple that I have carried with me as songs of my soul because they have ministered to me in different times and places in my life. 

The first song that I consider to me "my" Charlie Peacock song is called "Almost Threw it All Away". It has ministered to me over 3 distinct times in my life. Before I tell you how God used this song to save me 3 times, let me show you the words:

ALMOST THREW IT ALL AWAY

I remember when you were just a girl, and I was a boy in a big man's world,
We had know idea what time would reveal,
Little did we know that over a million tears had to fall,
That is no exaggeration, 'cause I counted them all,
Every sad and senseless incident has been mine to recall.

But, you never gave up,
You never gave in,
You didn't say "No, I can't take anymore of this,"
You never gave up,
You never gave in,
You refused to believe that love had come to an end.

Oh, I almost threw it all away; traded truth for a lie, diamonds for clay,
Oh, I almost threw it all away.

Through some clever thinking and a strong imagination,
I could twist the truth in any configuration, I'd find myself doing things that I never dreamed I could do. (It;s a sad thing.)
I've known the kind of pain where to can't catch your breath,
You say, "If this is life, then please bring me death,"
Thank God that wish I made never, ever came true.

You never gave up,
You never gave in,
You didn't say "No, I can't take anymore of this,"
You never gave up on me,
You never gave in,
You refused to believe that love had come to an end.

Oh, I almost threw it all away; traded truth for a lie, diamonds for clay,
Oh, I almost threw it all away.

True love doesn't come and go; here today then gone tomorrow,
Doesn't speak the wicked word that breaks the heart in two,
Doesn't renegotiate what it knows is true,
Doesn't give up, give in, throw it all away.

The first time this song saved me I was single. I know the words are written from the perspective of a man to a woman but I was struggling desperately with depression and in my struggle I ended up in the psych ward of a hospital for a week. Upon my discharge, I got in my car, started it up and this song came on. It was as though God was saying He'd never give up on me even though I had almost thrown everything away and nearly ended my life. God never gave up or gave in or refused to believe love would come to an end and yet I almost traded what He had given me for something far less. I DID say "if this is life, please bring me death" and I do thank God that wish I made never came true. I almost threw it all away and God saved me and loved me.

The second time this song saved me was when I was still single but had entered the online dating world. It was 2001 and I was "seeing" a man named Ed (Not his real name). Ed would call me only when he had nothing better to do or was in trouble and needed help. Ed would get mad if he called me and I had other plans. Ed would try and get me to do things I was not comfortable doing and then get mad if I didn't comply. Ed was using me and I knew it but I was afraid to cut him off completely because I felt as though Ed was better than nothing. One day I was praying about this and God seemed to speak to me. He said, "Amy, if Ed is what you really want, I will give this to you. Just know that Ed is not My best for you. I have plans for you better than Ed." I didn't believe it. I didn't think I deserved anything good at the time. Then I heard this song and I thought how I could hold on to Mr. OK for now and lose out on God's best or I could let go and wait for whatever God had in mind. The only trouble was that God didn't give me a timeline. But the kicker was the last stanza of this song about true love. Ed was not showing me true love and in fact wasn't even treating me like he liked me very much. So I said goodbye to Ed and thankfully, shortly after, I met the man that is now my husband.

The third time this song saved me was well after Bob and I were married. Our marriage has not been easy (well, whose is?) but not because we don't get along. We do. When we were dating we talked a lot about what we wanted in a marriage. We agreed that we were not going to get married just because it was the thing to do or because our friends and families expected it or for any other reason other than it was what God wanted us to do. We also agreed that if we got married, we would do whatever it took to stay together. We were older (Bob was on the verge of 40 and I was 33) and weren't going to stand and say vows to one another that we weren't prepared to fight for and keep. Ah, the idealism of the unknown. 

Most people know our story. Bob was diagnosed with Muscular Dystrophy 6 months after our marriage. He lost his job and went on SSDI. We had to declare bankruptcy due to medical bills and other debt. I became the main breadwinner. Bob was told he needed a wheelchair and then had a medical issue that landed him in ICU for a week. I had gastric bypass surgery and had a medical issue that landed me in the hospital for a couple of days. We tried and tried to have a baby to no avail. We had money trouble. Our dreams were shattered. I went back to school to finish my degree only to end up becoming Bob's PCA due his failing health and a bad fall he'd had while I was gone. Throughout all of this Bob told me it would be OK if I left him because neither of us knew about the MD before we fell in love and got married. I was indignant and angry that he would tell me this. I told him that vows are written the way they are to cover the contingencies of life. People might be saying "For better or for worse" but mean for better and better-er. I wanted him to know I was not like that. Ah, the idealism of the indignant.

During our most challenging time of trying to get pregnant, I was a wreck. Our insurance paid for 3 IUI tries. None of them worked. I felt like I'd had my last chance to be a mom ripped from me and I fell apart. I hated God and stopped going to church. I stopped reading my Bible and stopped listening to Christian music. I stopped praying except to yell at God. And I almost left Bob. Not because I felt like he was the reason we weren't getting pregnant but because I felt like if I couldn't be a mom, what was the point in even being married? I could be single and not be a mom and still let Bob go on to find someone who could conceive and bear his children. Plus I was a mess. I was sad...so sad. All the time. I was broken and could not find a fix. I hated my body because it could not do what women's bodies were meant to do. I hated myself because I wanted something so much and could not find a way to get it. I thought Bob would be better off without me. Better off without a defective, emotional wreck of a wife. Then I heard this song again. It reminded me that I could not leave Bob. I was reminded of the talks we had had about how we didn't want a marriage that was easily dissolved. I was reminded of the times we talked about how the devil lies to us about our situation about how even if I were to leave, I'd be taking all my crap and the things I hated about myself with me. Plus, even if he or I left so the other could have a "better life with someone else" that doesn't mean there won't be other issues, problems, and troubles. THAT is the lie. There will always be troubles. Always. What we wanted...what we still want is someone that will face the troubles with us. We want a partner who will go into life's battles with us, side by side.

September 29th was our 11th wedding anniversary and while a scant dozen years doesn't seem like much to some, we feel otherwise. I want to say thank you to Charlie Peacock for writing this song. I want to say thank you to God for using it to save me 3 times from making stupid decisions that could have had drastic consequences and altered my life in dramatic ways. Most of all I want to thank my amazing husband Robert A. Mingo for sticking by me and staying married to me throughout all the crud, all the stress, all the crap life has thrown at us. Thank you for not giving up, giving in, and throwing it all away. Thank you for not letting me throw it all away. Thank you for the amazing times, fun time, laughter, travel, sacrifice, kindness, dreams, hopes, prayers, and holding on. Thank you for never saying "I can't take any more of this". Thank you for not giving up on me or on God or on our marriage. I dedicate "my Charlie Peacock song" to you and our marriage. Here's to however many more years the Good Lord seeks to give us and here's to us for hanging on and not trading our diamonds for clay. 

Taking Hits

I don't know where to start...or even what to say. I guess I should start by saying things have been tough. Bob and I both feel as though we've been in the ring with a prize fighter. Or rolled on by large vehicle. The hits keep coming.

After we got married nearly 11 years ago Bob was diagnosed with Muscular Dystrophy about 6 months later. We have come to terms with that and have dealt with almost all that comes with that after spending months and years suffering a bit from what could be PTSD and waiting for the other shoe to drop. Then there was the time Bob was in ICU and we thought he would either die or come out attached to a ventilator. Praise God neither happened but we again felt a bit on the battered side.  Since then there have been other issues and hard times of course. What family, couple, or individual doesn't struggle with hard times and issues?

Once, Bob told me that he wouldn't hold me to our vows and that I could leave him. He said he would understand and there would be no hard feelings. I told him that I made those vows seriously and I take them seriously. Plus, leaving him would not mean I wouldn't have struggles or hard times. I'd just be trading one set of difficulties for another and why not stick with the struggles in which I was already familiar? Isn't it just like the enemy of our souls to tempt us with the lie that what we have isn't as good as what else could be out there? And yet when we succumb to the temptation and find what we thought was better than what we had, we find that what we NOW have is also difficult and full of issues.

Anyway. In the last year we have had more than just Bob's Muscular Dystrophy issues to deal with. Suddenly my health was an issue. Out of the blue, a seizure. Then another. Then another. Three seizures means a total of 9 months I am unable to drive. So suddenly mobility is an issue. Thankfully, the doctors found reasons for the seizures and treatments. Treatments mean surgeries and procedures...on my brain. Treatments also mean medications and medication adjustments. Treatments also mean healing. Doctors perform the treatments/procedures and then I have to heal.

During this time I experienced a  lot of lost. I lost some of my hair and shaved off the rest. I lost my energy. I lost my ability to go, go, go. I lost my independence. I lost some of the peace we had built up waiting for a shoe that never dropped. I lost my claim to good health. I can now technically be classified as having epilepsy. I wear a medic alert necklace whenever I go out and I have an ICE app on my phone in case I should have a seizure while out in public. It's been challenging.

Since spring started, we have experienced more hits. 

1.) Our beloved neighbor Mrs. Roberts passed away the day before mother's day. Right now her house is on the market and who knows how that will play out. 

2.) I was dropped out of the blue by MNCare (thankfully after my biggest brain surgery) and am in the process of reapplying. This is a ridiculously long and drawn out process. In the meantime I was told I owe the hospital approximately the cost of a brand new mid-size import car.

3.) Bob lost both of his parents within 3 weeks of one another. This has been a huge loss and the grief he is feeling and dealing with has been immense. We are thankful he has no regrets in regards to his relationship to them and that he was able to say goodbye and spend time with them before they passed. 

4.) We are struggling financially. Enough that we've had to ask for some different kinds of help and seek out some kind of low income helps as well. We know God is faithful and He has always provided in the past so we have hope, it's just difficult living in the midst of it.

5.) Grief. It hits us both in different ways, at different times, and affects us in different ways as well. My first inclination is to isolate and disengage. This is not a good way to run a household or keep things going. I have made several mistakes in the past few months due to the ways I am grieving and dealing with my grief.

6.) Housemates. We LOVE our girls but they are all also struggling with their own problems and issues. Their troubles undoubtedly bring some drama and issues into our home that we don't really have any control over. 

7.) My parents were here for a visit and when they left, I felt a blast of sadness fall over me that may or may not have had its roots in their actual leaving. They live so far away now. It used to be I could drive 4 hours and see them for a couple of days. Now, we drive a couple of days to stay a couple of more days. I miss them and I was so thankful for their support while they were here.

8.) A couple of other issues I am not able to freely discuss here but are weighing heavily on both me and Bob.

I know in light of the fires in CO and the flooding in Duluth and problems in every other part of the world, our problems may not seem like much. However, we learned a long time ago that you cannot compare pain. Our pain is our pain. My grief is my grief. These are hits we have taken and we are hurting. We are struggling. We are grieving. This doesn't dismiss or diminish others pain, grief, or hurt. That is theirs to own and deal with. Our lives have changed again and we are working at rolling with the punches. So far, we've not been to light on our feet or very agile in it all. We are learning to give ourselves time and grace to get through it. We just hope others are as patient with us as we try to figure this all out.

Let me end by saying this. Our hope is NOT in the things of this world. We have seen God at work in our lives and we have seen Him work miraculously. We KNOW He is aware of our hurt, our lives, and our finances. We are trusting Him to guide us through this. Though the sands may shift around us, God never will. He is our rock, our fortress, our place of refuge. THAT is what gets us through these tough times. Well, that and the community He puts around us. This community is Jesus with skin on and they love us unconditionally, totally, and without limits. We can't wait until we are back in a place to begin giving back to them again.

My Mother In Law's Obituatry

LINDSHOLM, Barbara J., age 74, of Robbinsdale, formerly of McGregor, passed away peacefully on June 19, 2012. She was preceded in death by her husband, Harry on May 30, 2012; parents, Jim & Grace Smith. She will be deeply missed by her children, Donald (Kathy) Mingo, Barry (Sharon) Mingo, Kristi (Tim) Nelson, Karri (Mike) Zallar, Robert (Amy) Mingo, Kelli (Dan) Harty; 12 grandchildren; 6 great grandchildren; sisters, Bev (Jerry), Sandy (Dick), Joan (Cal); many other relatives and good friends. Memorials will be accepted by the family for Muscular Dystrophy research and the Salvation Army. Visitation 1 hr. before service. Memorial Service 11:00am Thursday, June 28 at Cremation Society of Minnesota, 7835 Brooklyn Blvd., Brooklyn Park (763-560-3100) with interment to follow at Fort Snelling.

Grief is Weird

The death of my husband's mother has hit me pretty hard. Grief is so weird. You can't really control it and you just never know when a memory, feeling, or thought is going to hit you in a nostalgic way. 

I've been going through photos I've taken of Bob's family gatherings since 2000 when we began dating. I've found some really good pictures of his mom and his dad. I also found a box of photos in our storage area that Bob's mom gave him one Christmas (I think). I found some of her in there too (Plus some doozies of my 'fro loving, polyester disco wearing hubby). I edited all the photos in Elements and put them in an online album and sent it to Bob's sister. She had asked me to do something similar for his dad but I procrastinated and she didn't get it in time for his memorial service. THIS time I got it all together right away.

Bob and I haven't really felt like doing much.  Wednesday we both stayed in our jammies and just napped, read, chilled. Yesterday I managed to get dressed and do laundry and Bob got dressed and took Max for 2 walks. Today we both showered and dressed. I vacuumed. Bob walked Max. We're not sure what the rest of the day will bring.  At this point I wish there was a pizza or Asian food fairy that would magically deliver a meal to us as I just don't feel up to cooking or cleaning up the mess cooking makes right now.  I know we could reach out to folks and ask for a "meal train" but I feel like we have used up so much of our community's kindness towards us with the help we received after my seizures and brain operations and after the death of Bob's dad. We're like tragedy sponges right now and I wish we could wring out some of this grief and sadness and help others instead of soaking it all up ourselves right now.

I don't think I am depressed. I am just sad. I am a teeny bit sad for me but I am a TON sad for Bob. Since September he has had to watch his wife have 3 grand mal seizures, one of which resulted in her stopping breathing and turning blue. He has had to also watch his wife go through and recover from 3 brain procedures, one of which resulted in her losing 1/4 of her hair due to radiation.  He has lost his father. He has lost his mother. He has had to resume driving since his wife can't drive for 3 months after each seizure.  All of this in the past 9 1/2 months. He is struggling and sad. He can't help me fully come to terms with my new health issues and the changes they bring to my body, mind, and life and I can't fully help him deal with his grief and sadness over all these changes and loss. Thankfully we both know we are there for each other should we need some kind of emotional support or shoulder to cry on. Sometimes we both wish we could just wave a magic wand and make all the hard times and sadness go away. Not so life is easier but just to feel carefree again for a time. Maybe that's why God says to cast our cares on Him...?

I should end by saying though I liked her and thought she was amazing for raising 6 young kids as a single mom in North Minneapolis I wasn't particularly close to Bob's mom. She was always very nice to me. She was kind to me. She complimented me. She "liked" all my Facebook stuff and our last interaction on Facebook 5 days before she died was as follows: 

Amy B. Nelson Mingoposted toBarbara J Lindsholm

June 13

I Love you!

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  Barbara J Lindsholm and Elizabeth Peterson Nelson like this.
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    Barbara J Lindsholm Thanks Amy----I love you also. I just don't tell you often enough, xoxoxoxoxox
    

    June 14 at 7:04pm ·  · 1

Hard Times

Bob's mom passed away yesterday. It was not unexpected as she'd been ill but Bob admits he thought she passed faster than expected. Since his dad passed 3 weeks ago it has been a difficult time for him admittedly.

I am thankful my parents are here visiting from Florida. Dad's been keeping Bob busy by beating his pants off in cribbage. Mom and Dad have driven me on errands and we've spent time with my brother and his family as well. They have been supportive and encouraging and I love having them here.

Today we did nothing. We napped. We talked. We hid in our bedroom. We watched mindless afternoon TV. Watched the storm clouds gather and wane. Were thankful for the rain because it fit our moods and attitudes today.

Two good things happened this week though. The first happened early yesterday. We are the Minneapolis drop for our favorite local CSA. Though we have bought shares in previous years, we were not able to afford our usual half share this year. We thought we would just order eggs as we needed them and partake in the occasional forgotten box. After 3 weeks of the same person/family not picking up their full share and 3 dozen eggs, our farmer called to say that it was a share purchased as a gift for someone else and she would like to gift it to us instead. So now we have veggies and eggs all season!  What a sweet and generous gift.

The second good thing just happened. We were told that our favorite family camp event was full and didn't have room for us this year. We were so bummed. Especially since we really felt we needed some kind of get away and something fun to look forward to. Today I was told space opened up and we can go!  Now all we have to do is pay for it:-)  But yay!  Come this August, we will be soaking up rest, relaxation, relationships, and fun at Camp Castaway in Detroit Lakes.

Finally, if you are a praying person please pray for my husband Bob. In the last 10 months his wife has suddenly developed a seizure disorder and had 3 seizures...all of which he had to witness. His wife also had to undergo 3 different types of brain surgery/procedures. He lost his dad. He lost his mom. That's a lot for one guy to go through. I am thankful for our church family and neighborhood community. We have been so loved and supported through them. I am thankful for Bob and his love and care and patience with me in all things. I am thankful to God who never changes and is a solid rock even though the sands be shifting all the time.

I will miss Bob's Mom's Facebook comments and "likes" on my pictures and posts. I will miss her laugh at the antics of her kids. I will miss her stories of the specific antics of my husband. I will miss her kindness towards me. I will miss her.

Grief

My husband Bob's dad passed away last night around 10pm. Harry was Bob's step-dad but was more a dad to him than his biological dad. Services will most likely be held on Tuesday at Fort Snelling since Harry was a Vet. We covet your prayers.

Based on the comment of an anonymous commenter (which I didn't think my settings allowed...hmmm) I would like to clarify that the wording about Bob's dad comes from Bob himself and is how he felt about Harry. That's the last I will say in response to anyone who posts comments without name or identification.

AVM Surgery - The Biggest Brain Update

It's been a while since my cyber knife gamma radial surgery. Quite a bit has happened since then. I should probably write about the surgery just in case anyone else needs to have it and doesn't know what to expect.  Here is the gist of that day.

I woke up at 3:30 and since we had to leave between 5:30 and 5:45, I just stayed up. I packed a bag just in case but I didn't end up needing it at all. 

We were at U of M hospital by 6am. I went to the gamma surgery center to meet w/Pam the neurology nurse. I remember she was wearing an EFCA pin but I forgot to ever ask her anything about it. She put numbing gel on my forehead and on the back of my head in preparation for the brace I was going to have to wear later. 

I then went to the Gold waiting room where I signed in and was soon called back and brought to my own out-patient room and bed. I was told to gown up and put my clothes and shoes in the plastic bag provided. I hadn't eaten since 6pm the night before and by this time was so hungry. Not helping matters was the fact that we had to pass by the hospital coffee bar a couple of times and it smelled amazing. 

Once the gown was a nurse came in and got an IV started and my vitals were taken. Then a neurologist came in and a neuro exam performed. Then a surprise; Dr. Tekle! He was/is part of my neuro team at HCMC and performed 2 or 3 of my previous angiograms. He asked some questions, signed some papers and then prescribed sweet Adavan! 

While I waited for the next thing I was able to relax in my bed and watch HGTV and Mike Holmes. All too soon I was taken to get fitted for the skull frame. When I got to the room, I saw all the frame pieces and small tools laid out. The frame fitting was the most difficult part of the day. To get the frame on and set, they use ear bars! Though my ears are rather large, the canals are freakishly small and the ear bars hurt like the dickens. Also, as they were tightening the screws of the frame into my scalp I could feel the skin wrap around screw. I didn't faint or vomit but I definitely felt shaky and must have looked green or white because the nurse originally was going to have me walk to the next room but instead wheeled me to the MRI. 

Once I was in the MRI, I was given ear plugs that might as well have been made of sugar because, SO LOUD! Once inside the machine I could see a sticker with the letters RSTLN. I never asked what they meant. To me, they are the most used letters on Wheel of Forture, minus the E. I had to redo the MRI because I moved my mouth yawning. Hey, I was up pretty early and SO tired. After a while it was finally done and I could hear again.

Next on the docket was the angiogram. The atmosphere in the surgical room was festive and upbeat. My favorite medical professional aside from Dr. Tekle was Fern the karoke nurse. They played music during the procedure and it was mostly classic 80's tunes. Score! Also found out that many of the folks working with me had dogs so of course we all resorted to Dog talk. I was given sleepy meds and felt so relaxed. The angiogram was performed just easy peasy and then I was taken back to my room to rest for 2 hours. 

The best part of my day was to come. LUNCH! My nurse brought me a turkey sandwich, applesauce, and vanilla shake. It was the best lunch ever. After that I napped a bit before being given the OK to sit/stand up and have the gamma radial surgery. The nurse came and helped me check out of my outpatient room and she wheeled downstairs for gamma surgery while Bob, his sister Karri, and our friend Monica waved goodbye. 

Once I got to the gamma surgical room, my brace was rechecked for placement. Dr. Juang took photos for me:-) I was moved to the gamma surgery bed and my head frame was fitted to the surgical frame. This machine was similar to the MRI machine but it was blissfully quiet. I was told I could bring a CD and I asked them to put it in. I listened to Streams and it was the perfect music in which to have brain surgery. So lovely, mellow, hopeful, and dreamy. I dozed and was in and out of sleep during the procedure. Before I knew it, we were done. 40 minutes total.

Once done, the nurse came back and the head frame was removed and my head bandaged. I was given instructions, an RX, and my clothes. I dressed while Bob got the van and then we drove home. We were home by 3:30. I was in bed asleep by 5. I slept all night long for a total of 15 hours straight sleep.

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Since surgery I've been doing OK. I had daily headaches for 3 straight weeks. Now I'm down to about 3 headaches a week or so. I am back to having more energy though every now and then I have a day where I don't feel well at all. I have nausea, pain, lethargy, and fatigue. It only lasts a day or so and then I feel better. Oh, and I also have no appetite. Not like me at all. I can't predict when I will feel this way so that's kind of a bummer.

On May 7th I had a 3rd seizure.  This one came out of the blue. No idea why since I am on anti-seizure medicine and had not missed any doses. My seizure specialist wanted to check the med levels in my system and the test came back with the med levels within the prescribed therapy doses.

I met with my seizure specialist on Thursday. We talked about the surgery and I was reminded that I didn't have the surgery to minimilize the seizures but instead the threat of brain bleeding and/or aneurysm. The seizures MAY stop as the AVM shrinks over time but there is no guarantee. She also put me on Depakote. This is another anti-seizure medicine and it has an added benefit of helping to relieve headaches. The only negative is the time it takes me to get used to new medicines. The drowsy side effects bum me out but I usually get through them after 3 weeks or so.

In the midst of all this, my health insurance was not renewed. I wasn't really worried about it because if I've learned nothing else over the course of my life is that God is faithful and provides what I need when I need it. I was right. When I called the pharmacy to see what the out of pocket costs were on the new med I was told $163.00. So I called my seizure specialist to see if there was anything she or HCMC could do to help and she suggested calling the HCMC financial services. Turns out we qualify for their 80/20 co-pay program. Since all my docs are now at HCMC anyway, this works out. And my meds are $3! Quite a bit more affordable than $163. 

I am to go back for a blood test in 3 weeks. Turns out Depakote has a side effect of being a liver killer so they want to watch that. They also want to make sure my levels are in the therapeutic range on the new med. I am confident in my neurology team at HCMC and am happy they are so helpful and available.  Even though all of this is still new to me, it is old hat to them and they are happy to help me get more familiar with this new road I'm traveling. I am really thankful for them and their expertise. I still thank God that after that 1st surprising seizure Bob chose to tell the ambulance to take me to HCMC. 

Seized

Out of the blue I had another seizure yesterday. This time I hadn't missed a dose of my anti-seizure meds so we don't know what the deal was. I DO know that I wasn't feeling well so I was in bed, which was fortunate. I was reading and realized I was not making sense of what I was reading...aphasia. I put the book down hoping the aphasia would pass. It passed alright. It passed into a full blown grand mal seizure. 

Based on what Bob has said, he heard the screeching noise I make prior to a seizure and came in to find me convulsing but breathing and otherwise OK. He said this seizure didn't last as long as the other 2 but I still took a while to get my bearings. He said I didn't know where I was, who he was, or much of anything else. That lasted about 10-20 minutes before I realized where I was and "came to" myself. However I was still groggy, sore, and shaky and once again, my lip was (continues to be) numb. I could not stand or walk on my own. I called my neurology nurse and she said to come in. Thinking back to it now, she probably meant to come in to the neurology office but I'd just had a seizure. So we went to the ER. 

The ER was freezing and held an interesting assortment of humanity. There was a guy there with a stab wound. He was there when we got there and still there when we decided to leave 4 hours later. We left because all I wanted to do was lie down and go to sleep. Plus I was FREEZING. So we left, got home, and went to bed. It wasn't the best night's sleep I've ever had but it felt great to be warm and be in my own bed.

Today I am just hanging out at home. I called the neurology office again and left a message. Hoping to hear back from them soon.  Now we will probably go on a quest to find the right combination of meds or the right amount of meds to keep the seizures at bay. The only thing I can think of is that for at least 2 of my 3 seizures I was menstruating. I've been reading and hormone fluctuations have been suspected to cause seizures in women. I wondered too if the change from The Pill to Lupron shot could be to blame or a partial cause.

I still haven't written about the surgery...I intended to do that this week. But they told me that the surgery would most likely not stop the seizures but would decrease the threat of aneurysm and bleeding. Once you have a seizure, your likelihood of having other seizures is greater. Each seizure creates tiny amounts of brain damage and once your brain is damaged, it is easier to damage. Makes sense I guess. However, Bob did say that this seizure seemed shorter and not as violent as the other 2 I've had. So I guess that's good.

Just another speed bump on this journey. This speed bump means I can't drive for another 3 months though!  Grrr.