Kim and Calvin

I am so happy right now. My sister Kim(3rd one) is engaged. She is going to be married in the Manti Temple August 17, 2013. I can't wait to see her get sealed with her wonderful sweetheart for time and all eternity. They are so great together and I love them! I will have a great brother-in-law. When we were in Utah my kids just clung to Calvin and loved him. They loved having a fun man figure to give them anything in the world....including and apps that Braeden wanted on Calvin's iPad that were free :) I went wedding dress shopping with Kim and that was so fun and special. I will remember that and she will be a beautiful, blushing bride.

Updates

I have gone to two appointment in the last month and a half for just the neurologist. The first one he recommended that I try some new medications again and that I get botox in my neck, head, and temples. It is for pain management as well as to reduce the tension in my neck. My neck always feels like it is on fire and it is so tight and just hurts. I was thankful that he decided to try some pain management in that way. Ben and I had Haley watch out boys that day. We didn't think it was going to be a long appointment  but we were so wrong. It was about 4 hours because I had to wait for my meds. Ben went to the commissary and bought Haley a pan she can cook with for watching our kids that long. I am so thankful for Haley in that she is an angel and has saved me many times by watching my sweet angels.

A few days after I went to my appointment, the boys and I left on a plane for Utah. I will write all about that in my next post.

When I returned from Utah I had another appointment for botox and then the next day for my neurologist. I hired a young women from our ward to watch the kids the morning I went get botox because I wasn't sure what it would be like. I am thankful for Anna, and being willing to watch my boys. It made the appointment go more smoothly. On my way to get onto base before my appt, I couldn't find my military id. I panicked  I called Anna and asked her to look in another purse because maybe it was there. I had no time to turn around and go home to look for it. I prayed to Heavenly Father to help me find my ID.  As I was searching frantically for my id, something told me that it was home in the backpack I used as a carry-on to fly to Utah. I then knew exactly where it was. If anyone has ever read the book..."The Message" by Lance Richardson, it tells that Heavenly Father sends out family members to help us remember things. I know without a doubt that one of my family members helped me out that day. They were sent to whisper directly to me to tell me where my id was so that I could calm down and get to my appointment. From there, I called the neurology clinic and told them I didn't have my id. They told me they would see me and that I should be able to get onto base with my drivers license. For some reason, Heavenly Father allowed things to go smoothly and I was allowed on base.

My appt the next day with my doctor was good. He told me that I need to just keep doing what I was doing, and that the botox should kick in in 2-3 weeks. I am on enough different types of meds that there is one med each for three different types of headaches. He told me that if I am having one headache that is more prevalent to up the dose of a certain medication. He said he has a plan and just smiled at me. He had a secret agenda and I am okay with that as long as he is helping me feel better. I have also been using peppermint oil when I am really in pain and tight in my neck and face. It takes the EDGE off and I can usually function better when I use that. Some days are just off though and nothing helps.

I am so thankful to my Heavenly Father for sending us to this wonderful doctor who can help me and has helped me and will continue to help me. He is amazing and so so smart. I believe that everything is in the Lord's timing.  I see the botox docs and my doc again in May.

Neurology Consultation Today

This morning at 8:45 am was my neurology consultation  By some tender mercy of our Heavenly Father, Ben was able to be there with me. My wonderful friend Haley agreed to watch the boys for me. They were so excited. Ben and I ended up being 10 minutes late which means we were 5 minutes early. I checked in and we ended up waiting for what seemed forever. I had a huge pit in my stomach all morning. I don't know if it was a terrible feeling or what, but I felt absolutely sick and nauseous like I needed to throw up. I never did. We finally got called back and the crazy nurse was wack-o. I didn't like him at all. He wasn't friendly and he just took my blood pressure and asked if I got headaches more in the morning or evening. I told him I get them after naps sometimes, but never at the same time. From there I already knew this appointment was going to be a waste of time. I didn't want Ben to know that I didn't want to be there anymore. I wished Ben was my nurse. He would have have been friendly and made me feel at least a little bit more comfortable to be there, and he probably would have made me laugh. He is just wonderful like that. The nurse then asked if I had a CT scan recently. I told him I had one in November. He asked if that was my most recent scan and I told him no and that I had two MRI's done very recently. He said, okay and walked out...he left the door wide open and never came back. Then the doctor came in. He shook my hand and then asked "What can I do for you?" WHAT!!!! I was floored. Dear neurologist...I am here for you to take my birth control out. Why do you think I am here you moron? I replied," I would like you to help me feel better." I though all along that he knew what was going on, that he knew my condition, and that he had taken the time to read my medical history. No...he had no idea what was going on with me. He could have thought I had some nerve in my head that kept twitching for all he knew. He had absolutely NO idea what was wrong with me. There was no mention of the word Chairi on either part because I though he knew....so did Ben I am pretty sure. Ben asked him if he had taken the time to read my history and he said no. So then Ben and I had to do our best to go over my entire medical history with him and not miss any dates or details that might be pertinent to the situation. By this point my blood is boiling and I just want to slap a doctor...a so called important doctor. He asks me very few questions about headache pertaining to my numb arm (which I had to clarify happened only one time). He then asked me up on the table to do an exam. I have no neurological deficits at this time which is good, but that could change. For some reason when I am at the doctor (especially this time) I numb up and totally forget everything I want to say. This time, he didn't ask my anything so what was I supposed to do, read his stinking dang mind. No, because I cannot do that. He got done with his exam and told he was going to go look at my films (my MRI's). I was so mad because that was more waiting and he should have done that before he came in. By the time he came back, I was crying and I was so upset. He proceeded to tell me that I have something called Chairi...which duh...I already know. When he started to describe it he said the words "oh, but that is probably over your head." Oh my gosh! Like I don't know what I already have, and it is not over my head because I have researched it and I know what I have because I HAVE IT! As he continued to explain what Chairi is, he got to my 7mm herniation and he said that it wasn't triangular and that is wasn't pressing against my spinal cord(because it is JUST 7mm), and that he doesn't' recommend surgery because...wait for it...I have MIGRAINES! Bahahahahaha...it is almost laughable. I don't know whether to laugh, cry, be really upset or laugh at him. He asked if I had questions I paused, looked at Ben...heard Ben reply kind of upset-ly "Nope." Then I wanted to punch him in the face. That is what I wanted my question to be...Sir, can I punch you in the face, because you have no respect for me, my situation, my husband, and you care enough to look up my information before you come to see me...Oh wait you didn't. I wanted to ask him what he would do if he had a mild headache all day everyday. He hung us out to dry and basically said good luck taking care of your migraines because you have Chiari, but you don't have the symptoms you need to call it Chairi. I am calling him laughable.

As I walked out of the doctor's office...I was trying my best to hold in my tears. Ben said, "Well, that wasn't what you wanted to hear was it?" Then I lost it. No it wasn't. Many things filled my mind that I wanted to say to the doctor now. Questions I had, things I wanted to say, statements I wanted to demand that someone hear. Today was the opposite of what I had imagined. I have imagined for weeks of a doctor who cares and who is going to sit with me and understand what I am going through and care...care at all. I wanted to be happy walking out of my appointment today, but I was so so sad. Sad, that I may not get to have anymore children and that I am going to have to suffer for the rest of my life. I am 24 for goodness sake and I don't want to be miserable forever. I just keep praying for comfort and that I will know what to do. I KNOW that things will work out, but this suffering along the way is almost unbearable.

My friend Haley told me that if the doctor today was as much of a jerk as he was, then I don't want him operating on my head for this risky surgery. Thank you Haley for that. It is true. That is another tender mercy. I most definitely don't want him touching me again or talking to me as a matter of fact. He was just disrespectful in someways and he definitely was one of those "I am higher ranking than you on the medical food chain" people. He told me I should go back to THAT Doctor Leidner guy so that he can figure out what is wrong. Oh, and he has no idea who my neurologist is....that made me uncomfortable too!

For now, I will meet with my neurologist, whom I LOVE. He has helped me so much and he know so much about Chiari and he actually takes the time to talk to me. I am so blessed to have his help at least. He may not care for my children, and he may not joke...but he knows his stuff and he is experienced in what he does.  I appreciate him and his help to help and care for me. He is a wonderful. I will be telling him about what has gone on today and hopefully he can give me some in site onto what goes next.

THEN...for some great news, I am going to Utah! It has been almost 5 months. Which is way too long for the boys and I. Ben told me that I can fly out and see my family. I am so excited and I cannot wait for this much needed vacation and break. It has been a really long 5 months for us. Ben will have some alone time while I am gone and that is what he enjoys. He just got a kayak and he will enjoy that thoroughly while I am gone I am positive of that. I can't wait to go to Utah and just enjoy some down time, and see my family, grandparents, sisters, my home, and where I grew up. Oh how I miss it. I want my boys to be able to outside and play without me being scared they are going to get stolen or anything. If you knew where I grew up...you would be so jealous! The ones that do know...you know what I am talking about. I also just need my mom and dad...I just need to talk to her, and have them give me a big hug. I am still a big baby at heart. I am weak and I love more than anything to have them hug me and be with me. It is wonderful.

I would like to give a BIG shoutout to all of those who have helped us or sent cards or called, texted, messed, etc. My inlaws, my parents, ALL of my sisters, my sister in law Edith, my old roomie Devri, My new friend Haley and her family, my ward here, and many others out there. It would take too long to name you all. I know some of you speak to Ben and I may not hear about it :) ...so I am thanking you all too! For now, the journey continues and here's to finding the joy in it. Love to you all.

Waiting for the Other Shoe to Drop

Last week something happened that I knew was going to happen sometime. I just didn't know when. I GOT mad. I needed to be mad. I wanted to be mad. Not at my family, not at Heavenly Father, not at my friends, not anything like that. I just needed to be mad. Mad that this has happened and that potentially these symptoms of Chiari will never go away. 

Well, as I was vacuuming last week...the other shoe dropped. It dropped hard. I was mad. SO MAD! I wanted to be alone, but I wanted Ben to hold me and love me. So I cried and cried and cried. I vacuumed as I cried. The kids were in the bath and Ben just kept asking me what was wrong, what did I need, what happened, the house wasn't that bad, etc. Which made me more mad. Poor guy! I just kept vacuuming ..the stairs, upstairs, crying I vacuumed cracks and crevices and closets. Ben left to return a movie. Later on after the kids were out of their bath and in bed, I  pulled Ben aside because he hadn't talked to me for about an hour. I calmly told him that I just needed to be mad. The tears kept coming. I told him I was sorry and he totally understood. That was a breakthrough moment for me. He totally got what I needed and stopped asking me. I didn't get mad at him or anything. I was just attacking the crumbs all over the house. I didn't know how to tell him at that moment that I just needed to finally get mad. Mad at what was happening to me, to my body, to our family, and to our relationship.  I don't want to be mad, I just want to be normal. I know that is not going to happen. 

I am scared to go to my neurosurgeon appointment in 12 days. Is he going to be good? Will we have to do a run around and find another doctor? Will he listen to us? Will be acknowledge that I am scared out of my mind...literally?

As I sit here at 5:58 pm I have a headache. One of the worst I have had in a long time. My neck is burning and it hurts. My eyes hurt. I feel like they are just going to burst out of my head. I would really love some hardcore pain meds...but taking them scares me. My kids are a mess, my house is a wreck, no dinner in sight, there are folded clothes from three days ago on the love seat, dishes in the sink, laundry piled high in my bedroom, and my bed is not even made. My husband will walk through through the door in about an hour and wonder what is wrong. I feel terrible because this is not me. I enjoy having a clean house for my husband to come home to with dinner made and a joyful smile on my face. Tonight, I will be laying on the couch in pain, kids in bed tummies full of macenroni cheese and Braeden calls it and Ben will come home and I will have to tell him, "Honey, you are going to have to find something to make for dinner because I can barely move." I hate feeling like this. I don't like the word hate and I can hear my 4 year old saying, "mommy, we don't say hate." But for now, I can say hate because there are things I hate.

Tomorrow will be a better day. Ben will be home and those days are ALWAYS better. I am so thankful to have a supportive husband...he may not know what it is like to have Chiari and he has a different viewpoint that most people, but when I am miserable...he helps me try to feel better. He tried to understand what is going on, I guess that I all I can ask for. Thank you Ben for being wonderful and understanding through all of this.  

Exercise Program

Above is what I have been doing for exercise. It is like insanity for moms. It is a 60 day program. I have used her (Lindsay Brin) workouts before, but when she came out with this I knew I had get it. It was 59.99 but in the two weeks I have been doing this program, I have seen results. Oh my goodness, I am so happy. I have lost 2.5 inches around my waist and that is all I have measured so far. I have gained muscle mass, which is great because then I am not flabby. It is intense, it is crazy, it hurts, but it is so worth it. I didn't think I could do it because of my disease, but I have been able to do it okay. I decided I could either sit and be miserable, or be miserable and lose some weight so that brain surgery recovery would be easier. I have had some more energy and I have felt my self esteem about my body going up. Thank you Lindsay for making this program. The workouts are short. I think the longest one is 40 minutes. She works all of your areas and it is just awesome. You can order from her website, www.momsintofitness.com or amazon.com. She knows what she is doing and I love that. She also gives you the eating plan for two weeks. The other program she has is called Pretty Fierce Lean Out. It is more intense. I plan on buying it later down the road after I have saved some money. It is about 75.00. Good luck let me know if you have any questions!

San Antonio we Stay

Ben got his assignment for after his fellowship is over in August and we get to stay here in San Antonio. As much as we would love to live somewhere of out picking...we do not want to move again or another major area change in our life. I would say another major change, but brain surgery in the pending future is kind of a big change. The last few days have been good. I boycotted one of my new meds because I am pretty sure it was causing these frontal headaches that would last all day. Since I stopped taking it, I had 2.5 headache free days. I thought I was in heaven. Then I woke up from a nap yesterday and BAM...there is was. Not happy about it. Same thing thing happened today. I may have to boycott naps if that happens every time. I have no energy today. I need to do tons of laundry and clean and even vacuum but that is probably not going to happen. Oh well, there is always Monday...because tomorrow is Sunday. Thank Heaven for that (except we finally have to speak in our ward).

Neurosurgeon Consultation Scheduled

Yesterday when we got back from the beach, there was a message from the neurosurgeons office. I knew just knew that because so many bad things were happening to us lately, that something good had to happen. There is a  little glimmer of hope that shone through when I called their office back and they wanted to set up an appointment for me to meet with the neurosurgeon.

I am scheduled for February 19th in the am. Less than a month...I can do that right?! Today so far, no major headache. Just tired from our vacation and I haven't even unpacked yet. I guess that can wait until tomorrow. For today, I am going to sit here and love my boys who are not quite themselves yet from being sick. Everything else can wait.

Chairi Stats...

Only 300,000 people in the entire United States have what I have. That is about 1 in every 1,000 births. To put that into context there were over 226,870 new cases of invasive breast cancer  in the United States in 2012, 400,000 people in the US have MS and they estimate 200 new cases are diagnosed each week, 1.5 Million Americans have some form of Lupus, so that puts my Chiari I Malformation (pronounced kee-AHR-ee) into perspective. 

The NIH (National Institute of Health) defines Chiari as:

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.

Christmas Pictures of my Boys

Christmas 2012...a Month Late

We had a GREAT Christmas. Ben was off for two weeks and we didn't do much. Which sometimes is wonderful. Ben's parents came from Missouri and got here Christmas night. They stayed for a few days. We just enjoyed seeing some family. We went on a train ride and got to see the Japanese Tea Gardens again. That never gets old. It is so beautiful. The boys really enjoyed having grandmom and grandad here. Ben and I actually got to go on a date one of the nights they were here too! We went to a frozen custard place and went to see Les Miserables. It was a great night. We loved being out without the kids and just had fun being together, laughing and talking. I will just let the pictures do the talking on this one...