This too shall Pass

This morning I am just too tired to be witty, clever or upbeat.  So here I go straight forward and simple... well as simple as I get.

****WARNING****

This post will be considered TMI (Too Much Information) by some  and will contain topics of menstrual bleeding. You have been warned so go back now if you don't want to hear it.

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Remember how I had this amazing talent to bleed for weeks and not die? Well I have still been dealing with that having constant doctor appointments, test and more hormones than I can count. With the aid of all the medication my uterine lining finally thinned enough that they could get a clearer view and they found two growths that have vessels. The doctor is pretty confident that they are just obnoxious polyps, really obnoxious polyps. He did say it is abnormal that such small growths would cause such extensive trouble but I guess I would have been more surprised if it was just totally normal. I can't have anything the easy way right?!

Anyway we finally had an answer and I was glad for that and felt confident that we could now "fix" it/me. So surgery was scheduled for Nov. 14 and I was supposed to start taking a hormone 10 days out to suppressing the bleeding to make surgery easier. Begrudgingly but hopeful I started taking the hormone again. The one that makes me feel like I'm and emotional roller coaster and not the kind at a fun theme park, Noo like a traveling carnival rickety type roller coaster that makes you unsure if you will survive it.

Now here I am the day before surgery and thinking I made it, in the clear and things are going to get better soon. In true Savanna style I had to complicate things. Today I started bleeding. I took the hormones just like I was suppose to and still it has happened. My doctor new that was a possibility because it happened before but he thought we had figured out just the right hormone and just the right dose.

Surgery is still happening tomorrow but this will complicate things. I feel like this entire ordeal has turned into one of those stories by Laura Numeroff. If Savanna sees a doctor he will want to prescribe her something. If she takes that medication it will not work and she will be referred to a surgeon and if she sees a surgeon he will most certainly want to operate...

 

So, that's the update!

 

To stay positive I have been thinking about this and it helps!

A good day is a good day.

A bad day is a good story.

At the end of the day it's all good.

- Glennon Melton

 

 

 

I may not look sick...

Oh.. where to start? I am about 2 months and 2 weeks post op. I have bad days and ok days. Let me just get this out of the way and say life after brain surgery is weird. It is! Just saying I had brain surgery is weird and sounds odd to hear. Life since surgery has been... challenging. I like to think I rose to the occasion under the circumstances but it's hard to feel positive about not have complete control over your own body.

****WARNING****

This post will be considered TMI (Too Much Information) by some  and will contain topics of menstrual bleeding. You have been warned so go back now if you don't want to hear it.

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To understand some of what I am gong through now I have to back to pre surgery. When I got the date for surgery I knew I would be on my period and the idea of dealing with both at the same time made me very uncomfortable. I spoke with the Dr.'s and they assured me it would be fine and I could handle it. They even went so far as to say I probably would skip my period just because of the stress of the upcoming surgery. So when I started my period on June 10th I was not surprised but not thrilled either. I managed it fine after surgery but it was one more thing to deal with. For most women a normal period cycle will last 5-7 days so when I reached the 10 day mark I called at talked to the doctor. I was told it shouldn't concern me too much that my body had been through a lot and it probably just needed more time to get back into a routine. I kept bleeding for a month before I finally got help! To make a long story short the Neurosurgeon said it couldn't possibly have been anything effected by the surgery and my primary Dr. seemed convinced that it had to be. My PCM (Primary Care Manager) started lab tests right away and put me on hormones to stop the bleeding in the meantime. I was suppose o take the hormones for 10 days straight and they were suppose to reset my menstrual cycle. They didn't.

 

I have since had more lab work done that always comes back normal. That would be something to be thankful for except that now we have nothing to help figure out why my body will not stop bleeding on it's own. I have also had ultrasounds done that come back inconclusive because the lining of my uterine wall is so thick they are not able to check for polyps or fibroids.  I must say it's a horrible feeling to have your body not due the simple things it is designed to do naturally. After I stopped the hormones I started bleeding again and when I reached the 2 week mark that time I was sent straight to a OBGYN specialist. He was stumped! He did more lab work and again it came back normal. I am back on the hormone meds again because they are currently the only thing that will stop the bleeding.  The plan going forward was to take them for two weeks at a time for two months. This will force my body to stop bleeding and then bleed only on the two week off period before I start them again. Our hope is that with a longer time period and the forced bleeding and stopping that my body will remember what it is suppose to do by itself. The hormone pills make my cranky and agitated but then stopping them is even worse. It's just a really horrible mess.

 

The bleeding aside I had some really not terrible weeks. Recently things have gotten tough. I have sharp pain at my incision site at times that forces me to stop what I'm doing. I get tired really easy and not my usual kind like I have hit a suddenly totally  and completely exhausted wall. I can't explain it guys but something is just not right. (It is incredibly hard to admit that I'm not as strong as people think I am.) I had my follow up MRI last week and I have my follow up with Dr. Boggan (the Neurosurgeon) on Thursday August 28th and a follow up with the OBGYN specialist on September 30th.

 

I know it may seem weird to see me out and I look like all is well and then your read this...

I have such great support and amazing friends that when somebody does make a negative remark it takes me by surprise.  I try really hard to still function like a "normal" mom, wife, friend, etc. and it really does take a lot of work. To the nay sayers I say if you could see the amount of effort or thought behind everything I do you would never feel the same. I would also invite you to read the Spoon Theory and hope that it will provide you with a more understanding outlook. It is an amazing story that helps answer the "But you don't look sick" comments and I think we could all learn something from it. It is hard to be sick but not look sick. I'm not saying it's easier to be sick if you actually looks sick but I do feel there is a difference in how some people treat you (good or bad) and what they expect of you.

 

I guess that's all for now and I will let ya'll know what I learn at my follow up on Thursday!



My Brain Surgery Journey

I cannot believe it's only been almost a month since surgery, it feels like it was just a couple days ago. I have good days and bad days or maybe it would be more accurate to say I have good hours and bad hours.
You might be curious/ interested to know:

• At the hospital when I was first woke up I am told that I refused to answer any questions or admit to any pain until they let Derek come back to see me. I don't remember this at all but apparently I would only answer their questions with response about how Derek and I met and how much I love him and how great a dad he is... I am stubborn. They brought him back and had him ask me my pain level and let him stay.
• When I first came home I had trouble understanding what common sounds were like sweeping, the kids walking around upstairs, the dishwasher or the car pulling into the driveway. I would constantly ask what's that, is that an ok noise, what are you doing? NOW I recognize those sounds again! Some take me a second to think about but then I figure it out.
• I currently sleep with 8 pillows! I layer them this way and that way until they are made into the perfect little pillow nest of comfort.
• I am very possessive of previously mentioned pillows!!!! So much so that in the hospital I had a dream that a man "came to visit" me at the hospital and tried to convince me to trade my pillows for pop-tarts! hahaha The nurses said that all the meds were probably to blame for such a weird dream but I was adamant ( hey it felt super real and I was extremely loopy) it really happened and requested that no visitors be allowed in my room.

I am currently taking things half days at a time and trying to celebrate all my little accomplishments no matter how small they are. I get frustrated because sometimes I can't do thing I could earlier and some things are just still hard to do at all.

• I hate washing my hair! It is so thick that as soon as it gets wet it feels like cement has been poured on my head and is so heavy. LIKE REALLY HEAVY!
• I cannot bend over. I'm pretty clumsy right now so if I drop something (which I do a lot) it stays there until the kids or Derek can get it.
• I have to sit down to shower. This might not seem like a big deal but I don't like it. It just feels weird.

On a higher note:

• I can go to the bathroom by myself! Seriously people take this for granted!
• So far I can walk, not far or super fast but I can do it. I can kind of dress myself depending on the outfit and my pain level at the time.
• I can eat solid food if it can be smooshed down or cut into small pieces. I sometimes cannot open my mouth very wide. The Dr. say that will get better as my neck muscles and what not grow back.
• I can read now! When I first came home I couldn't hold my head and arms up the right way to read a book. Weird huh?
• My hair is so thick you cannot really see my shaved spot/ incision/scar. I don't really know what to call it at this point.
• I can stand and walk long enough now to get my own drinks. I still have to drink everything from a straw but now I can get it myself.

Derek took lots of pictures to document it. I told him when this is all over I want to be able look back at the good and the bad and be able to remind myself I can do hard things and a bad or tough time doesn't make for a bad or tough life. My sincerest thanks to all who have helped in every way possible, I couldn't do it without you!
(The video has little comments shared on most of the slides. If your not really interested in them but just want to see the photos you can just view it here. If you would like to be able to read them you should probably view it from Youtube or just make it full screen) You should also go easy on me for any typos or what-nots because Hey I did just have brain surgery!

Tomorrow is the BIG day

  The day is almost finally here! I got my phone call and I'm #1!!! For surgery, that is. I'm his first of the day so I have to be there at 5:30am and surgery should start between 7-7:20am. The operating room is reserved for 3 hours and 45 minutes but Dr. Boggan thinks it should only be 3 hours. SO, it's happening. Bright and early tomorrow I'm having brain surgery.

  I cannot eat after 10pm tonight and Derek says I can have whatever I want. MWUHAHAHAHA SO far I want a Peach milkshake from Chick Fil A, Sweet Corn Tamales from The Cheesecake Factory and PIZZA! That's sounds delicious right?!!! haha We will see.
  I wanted to give the kids a fun gift just to have for summer and to kind of say sorry I've been grumpy and sick. I finished these super awesome Teepees and they LOVE them! So today we are just hanging out enjoying each others company!

I just want to feel better

People have a lot of questions! How can I help, How are you feeling, Are you nervous, What do you need....
The list goes on. I don't know the answers, I don't know how you can help because I don't know how to help myself. I'm kind of nervous but mostly I just want to get it over with. I feel like I need to just get it over with. Maybe I just need a new brain. Do you have one that you can spare?

  By far the hardest question to answer is how are you feeling. This question makes me a liar because I almost always say Oh I'm fine or I'm having a good day or when I feel guilty about being a liar I say I'm tired. I don't want to be a liar, I teach my kids not to lie but it's just easier to sweep the question under the rug. I do not like the truth about that question. It's not that I don't feel loved by you all or cared about it's just that... UGH.  There is no easy way to say I fell down the stairs trying to quickly get the sick dog outside and ended up laying in a puddle of my own vomit. Before any of you say "Why didn't you tell me" think about it. Is that something you would want to tell people? It's embarrassing and if any of you ever bring it up to me in person I will act like I have no idea what your talking about. Surgery is on Friday, I can claim amnesia on that incident, right?!

Vomiting, falling and questions aside I am doing good. I choose to be happy everyday and have so many things to be thankful for.  It's not always an easy choice but it's the choice I make!

Help Wanted!

  Friends! OK, I'm read y to say it..... I need help! I am planning to make a bunch of freezer meals to help ease the work load after surgery. Do you have a favorite freezer meal? Know of any tried and true recipes that even your kids love? Spam me with your favorites, please! You can send them to my e-mail, post them on Facebook, send me your pins for it on Pinterest or post them in the comments here.
   I've frozen meals before but never like a bunch at once. I would love to hear any tips and tricks you have to offer!
Thanks

Pre-Op

Soooo yes I know, I'm the worst blogger ever! I said I would have dates a while a go and I did. I just didn't ever get around to blogging it. SORRY! I actually had my Pre-Op appointment today. It was just A LOT of paperwork and then lab work. My surgery date is June 13th. The lady that called me made sure to let me know it was Friday the 13th and then even said EEK! :{ I am not a superstitious person but I still didn't need to hear that, I mean really what did she think that would contribute to the conversation?

Oh well, that happened.
Surgery is Friday, June the 13th. From now until then I plan to have tons of fun with my family and keep trucking along with my sewing projects. It's been fun having time to just sew whatever I want.

I made these cargo Shorts for Seth from the Peek-A-Boo Pattern Castaway Cargos. I love that I finally found something to make for Seth that he thought was cool. He had really been wanting corduroy shorts for some reason.

This is The Adelaide A-Line dress from Seamingly Smitten. I love how the fabric fit over this pattern!                   

This year I made Roni's Easter dress! I used the Peppermint Swirl Dress Pattern from Candy Castle Patterns. This dress looks like a dream and it came together so easily! I'm already planning a rainbow swirl version of this for her too!







 We are going to celebrate Father's Day a week early since I will be in the Hospital for the actual day. Derek is taking leave and is happy to get to spend some time with the kids. It's been really cute listening to Derek and the kids plan all the fun stuff they are going to do, I just hope that they remember to feed me.
This should be an interesting summer!!!
-Savanna

May 1st

   So.... Derek and I met Dr. Boggan today. Dr. Boggan was very kind and friendly. He feels that due to my complete lack of CSF flow behind the brain Decompression Surgery is not just recommend but really needed.
    I feel hopeful. I've always known that things could get worse but I finally feel like I'm doing some thing that kind (long term) make things better. I am aware that recovery will be long and hard with ups and downs. Please remember that surgery is not a cure and I feel like I have a realistic expectation for life after surgery. I was told that I should expect to have surgery end of May or beginning of June and I should have an actual date for pre-op and surgery in about a week. Chiarians that have had surgery are lovingly referred to as a Zipperhead because of the appearance of the scar after surgery. I like that there is a name for, it feels more like owning it as opposed to being embarrassed by it. My hair is longer so once I don't have to have it pulled back, so it doesn't irritate the incision, it probably will not be visible at all or that's what Dr. Boggan said. It sort of feels like it will be a badge of honor showing I made it! The scar is just proof I made it, I was tougher, I was braver, I was more than my Chiari!
Want to see some Zipperheads? click here
Everybody has a different size scar and different amount of hair that is shaved. If you see some and think AHHH they have no hair, don't panic. Many people choose to either cut their hair very short or shave it themselves before surgery. I hear it is itchy and obnoxious but I think I'm going to try really hard to hold out and just let the Dr. cut/shave what's needed. I'm already giving up part of my head, I would like to keep as much as I can! :)


   I will let you all know when I have an actual date, until then thank you all for your continued support.

- Savanna

Happy Days

   For all your love, support, help, and encouragement THANK YOU! I'm having some good days. I get tired really easy but then I just rest. Common sense, right? I honestly cannot logically explain why it has taken me so long to figure that one out. If I had to guess I would say pride was a factor. Nobody likes to be told they can't do something. Lesson learned now.....mostly. Hey, a girls got to do what a girls got to do. Many of you have asked what you can do or how you can help. Please continue to pray for me. Pray for me to have courage, strength and a sense of humor. I need those things daily.

   On a lighter note, it's spring! The weather is nice and I have fallen in love with several new sewing patterns for spring clothes. Several people have asked if it is driving me crazy waiting for my May appt. and the simple answer is nope. I wish it was sooner but it's not so life goes on. I'm thinking fun sewing projects is just the way to pass the time!

Thanks again for the support and prayers. For now I'm happy!

So I had a bad day.....

    Many of you know but for those that don't I had a really rough day yesterday. It really started Sunday when I woke up with a nasty headache so I stayed home from church and rested all day. Day after day it got a little worse and finally on Wednesday I reached my breaking point. I was vomiting on and off all Wednesday and just kept telling myself if I can just make it to school pick up then I can get the kids home, take some medicine and sleep it off. So my Mommy adrenaline kicked in and I made it to school pick up. I felt horrible and I am so sorry to any of my friends that felt I was being short or rude to them. I really just was trying to forge ahead in survival mode and I did not intend to hurt any feelings. Once the kids were home and having a snack I called Derek and said "I need help now". He must have known I was serious because he didn't ask any question and said he was on his way. Next I sent a text and asked for help for someone to pick up my kids, and then I called my Primary President and asked her if she would cancel scouts for me. Beyond getting those things taken care of it just hurt to much to think. I would start to cry on and off but mostly just tried to stay quiet and calm because truthfully the crying made me hurt worse.

    My kids were picked up, I got a blessing and Derek took me straight to the ER. As soon as we got there I was vomiting again and convulsing so they saw me right away before Derek had finished checking me in. They kept asking question that I could barely understand and couldn't even think to answer so they started and IV with nausea and pain medicine to stop the convulsions. Once the nausea stopped I could finally tell them how I was feeling and what was going on. I explained I have Chiari 1 Malformation and that this was the worst headache I had ever had in my life. They did a CT scan to check for hydrocephalous and that came back clear. The ER Doctor spoke to my Neurologists and they decided if they could just break the pain cycle and stop the nausea that would provide enough relief that I could be released to go home and follow up with my Neurologist while waiting for my appointment with the Neurosurgeon which is set for May 1st. (That's a long way out I know!)
    After a couple bags of fluids to rehydrate me, 2 bags of Magnesium, some other pain med and nausea medicine I got the ok to go home and straight to bed! They did also send me home with nausea and anti inflammatory medicine.  Honestly I'm feeling better today, just really sleepy but I'm going to be ok. I will post updates to the blog so that it is easier to let everyone know what is going on in a more healthy way than having to call and talking about it over and over.  I really am very grateful for everyone's texts, calls, e-mails, concerns, offers of help, support and encouragement. Thank you all!

MY JOURNEY WITH ARNOLD CHIARI 1 MALFORMATION

 

In high school I ran Cross Country and Track. My senior year (2002) I just couldn't keep up. It was all I could do to finish a race and many times I would pass out. I really struggled with these new limitations and matters where only made worse when doctors couldn't find any explanation for my pain. I started having debilitating headaches that caused extreme nausea. I knew something was wrong, other people had headaches and it didn't seem to really interfere with their daily life. Doctors would give me pain meds and send me home. Several Doctors grew frustrated with my constant complaints told me it was all in my head and. The pain and headaches continued and I learned to just keep it to myself thinking maybe it is in my head.
 
Fast forward several years and I was married with my first child. After delivery of my son my headaches were more frequent and I had a painful numbness in my right arm and my depth perception couldn't be trusted at all. I fell frequently and started to consider myself extremely clumsy. I will skip the details and just say that Doctors (including the Neurologist I started seeing) were not helpful. The only thing that could be agreed on was that I did not have MS. That was great news but not really helpful.
 
Finally in 2009 I had a new Neurologist and after a new MRI I got a diagnosis! The Dr. said "Oh! That's interesting"... He described to me what it was and pretty much said this is what you have, lets watch it and see how you feel, take these and these and these for pain and come back in 3 months. I left his office feeling hopeful and  justified. Those next 3 months were lousy!!! The meds made me feel exhausted, nauseous, and dazed but did absolutely nothing for the pain. At my next doctors appointment I explained to the doctor I hated the medicine and it wasn't helping. He prescribed different meds and sent me home again. Leaving this appointment I realized that having the diagnosis felt good but didn't actually help and the medicine was just suppose to make me comfortable because there is no cure for Chiari 1 Malformation.

Again the pain meds had nothing but undesirable side effects. I stopped taking the meds and didn't go back to the Neurologist. All of my doctors had made me feel insignificant and crazy.

3 and a half years later I was in a new state and at an appointment with my Primary Care Dr. she put in a referral to a Neurologist. This Neurologist was different than all the others. He was kind, really listened to me, was comforting and made me feel like he was genuinely interested in my care. He requested new MRI's and I was excited and hopeful to visit him again. I never receive a phone call or letter about the MRI appointment. I called my insurance company and checked the request status, it was good so I called the hospital to schedule it myself. The soonest they could get me in was 10 weeks. Annoyed I made the appointment and waited and waited and waited. The I got a phone call and was told they needed to reschedule and there was absolutely nothing they could do about it. The new appointment was 7 weeks later than the last!! At that point I had to call and postpone my follow up appointment with the neurologist because I still hadn't had the MRI yet. The time for the MRI came and I missed the appointment. I was so mad at myself and frustrated with the situation that I just gave up on it.

I waited another year to see the neurologist. It happened by chance. I went to my Primary Care Doctor for what I thought was just a nasty sinus infection. After checking me out she said I had a sinus infection but also wanted to know what my Neurologist thought. I didn't understand she just said I had a sinus infection, what was he going to do about it. She put through the referral to see the neurologist again and just said it had been too long since I saw him last.

You can only imagine my surprise when I got a phone call the next day and had an appointment scheduled for the following day. I went in, had a brief conversation and he looked in my ears. I still wasn't sure what it mattered but it seemed like it did. Either way I left the office with new MRI and Cine requests. The very next day I got a phone call and had an MRI scheduled for 2 days later!!!
The MRI was on a Friday and by Tuesday (Monday was a holiday) afternoon I had a follow appointment with the neurologist to read the MRI report.

It wasn't good. He said things like this is serious Savanna, See your C2 here and how it leans back on the brain stem, this is serious Savanna, doesn't this look sunken more than before, Surgery is really needed,  look at your CSF flow, do you see that, There is no CSF flow behind your brain, this isn't normal, you have a spontaneous CSF leak, this is serious, it's coming out your ears, You have to see a Neurosurgeon, SERIOUS Serious serious.
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This is my journey. In the beginning all the doctors said it was all in my head and they were MOSTLY right. This is the story of my brain falling out of my head. It's been hard but made me stronger too. I have Chiari but Chiari doesn't have me, it's just a bully I beat up every morning when I get up!