Friday, May 4, 2012

MS 4: My Long Awaited Neurologist Appointment & Diagnosis

The 12 days leading up to my neurologist appointment were really hard. I was under a lot of stress and I was scared. I just couldn't sleep at night because I had too many thoughts. So I would get out of bed and soothe them with a bowl of ice cream- such a bad two weeks to be an emotional eater!!

My appointment was scheduled for the nurse practitioner with the neurologist being available to step in at the end of the appointment. I wondered if the nurse practitioner would be able to help me or if I would have to schedule a follow up appointment to have more time with the neurologist.

I wondered if my neurologist would think I was "crazy" and then I would have to be referred to a neuropsychiatrist. 

I spent a lot of time wondering if this new neurologist would think I was crazy for wanting another baby.

I wondered if he would tell me I couldn't have a baby because I needed to be on medication.

I worried about why I wanted to have another baby when there were so many days that I felt guilty because I couldn't be there for my boys 100% of the time. There were a lot of days that I relied on help from others- my parents, neighbors, and friends to help take care of my boys and my house.

I felt guilty that my boys were stuck inside of the house when I couldn't move or walk. I felt like it was my fault when Hunter randomly stops what he is doing and says, "Sorry, Mom. I can't do that because my legs don't work."

I wondered about my future and my boys future and if I could give them a fulfilling childhood or if they would be lacking because their mom had problems.

I wondered if my husband, parents, friends, and neighbors would just get tired of trying to help me and if I would be a burden to them.

I wondered what I would do if they just couldn't find anything wrong at all.

I am pretty sure I gained 10 lbs from all the stress and ice cream. I just didn't know how to deal with it all. Those thoughts and fears were just too much. I knew it wasn't smart to stay up late by myself to think about those things. I know I would have just felt better to have gone to sleep and woke up with a new start the next day. I know people are probably wondering where my faith is.

But fear is real. Depression is real. Anxiety is real. Sometimes, it feels like you just can't escape it.

When I woke up the morning of my neurology appointment, a bunch of snow showed up on the ground. I was already anxious about the appointment and didn't want to have to deal with the snow too. I packed my boys in the car and drove them to my in law's house so they could be babysat. It was early and the snow had not yet been plowed.  Everyone was driving slow and I was getting nervous about being late. I dropped the boys off and then went to pick up my mom so she could go to the appointment with me. She is the best person to bring to my appointments. She has seen all of my symptoms and issues since I was a teenager and knows my medical history like the back of her hand. It is all still new to my husband, so I take my mom instead. I made my mom drive my car. I had so much anxiety over this appointment that my hands were shaking and I didn't feel comfortable driving in the snow. My mom took over for me and she told me to relax.

When we made it to the Dr.'s office, I checked in and prepared myself for the long wait. I was surprised that I only had to wait a few minutes before I got called back. Things were looking good so far. When the nurse practitioner came in, I was glad to see it was a woman. She was kind and careful and was a great listener. We went over my medical history, which took a good 2 hours, and then she did an exam. My favorite things from my time with her were:

1) When I told her how I felt about having more children and how I was worried about it, she said, "Of course who want more children. We will help make that happen."  Her answer was like taking a burden off of my shoulders. Finally, someone who understood. As a woman and a mother of 5, she understood my feelings, where as all the other male doctors I talked to just didn't get it. I asked her about the medical testing on medicines that would help me and what would happen if I had a "surprise" pregnancy while taking the meds. She talked about how dangerous it could be and it just further solidified my choice to not take any medicine that could be a risk until I was ready to be done having children.

2) I asked her about neuropsychiatrists and what they do. After she told me a little bit about them, I decided to ask her point blank if she thought I was crazy. She said, "Absolutely not. No one would make this up and then cause themselves to have a panic attack. That is not how the body works. This is REAL." Those words were so comforting to me.

Afterwards, she went and consulted with the neurologist and then they both came back into the office. He wanted me to have a CT scan to check for a tumor in my pelvis, an EEG to see if I was having mini seizures, a nerve conduction study in my arms and then another in my legs, and then more blood work.

The next week was spring break for the school district and I didn't have to babysit because my friend had it off. I asked if we could schedule all the tests in one week so I could do it without having to worry about the baby. The receptionist was able to make all of my appointments when I needed them and I left the Dr.'s office feeling positive and optimistic, with a much lighter burden on my shoulders. That is rare for me and Dr. appointments. I felt that even though it took months to get in and I was frustrated being switched from Dr. to Dr., Heavenly Father knew which one was the right for me to see.

The CT scan was only 10 minutes long. I had to drink 2 bottles of "contrast" that tasted disgusting. They also put more contrast in my IV and it makes you feel like you are burning and also like you are urinating all over. Such a weird feeling!

The EEG was interesting. I could only sleep from the hours of midnight to 4am, so that I would be sleep deprived enough to be able to sleep during a little segment of the test. They stick about 40 little electrodes all over your scalp with some goop. The lady placing all of the electrodes commented that people with long and dark hair are the hardest to get the electrodes placed. I did the test, which involved hyperventilating, closing my eyes and having a strobe light flicker like crazy, and then had to sleep for the last portion. The worst part was trying to get all of the electrodes out of my hair. Afterwards, I had to run home to shower so I didn't look like a nasty goopy haired person for my nerve conduction study that was scheduled a couple hours after the EEG.

I headed back to my neurologists office so he could perform the nerve studies and Chuck met me there. As I mentioned before, the only way I can describe a nerve conduction study is like being tased over and over again so they can check on the health of your nerves. Then they stick you with needles and test you some more.  I found the test really annoying, but it was a good chance to talk to my neurologist about everything. Between ever tase/shock and every needle stick, we would talk about my symptoms, my family, the funny things my boys did, my hobbies, my husbands job, our insurance, the economy, etc. The test took a while and my neurologist was kind. Every time he would shock me, and you see my whole body spasm and I would just laugh to mask the pain and embarrassment, he would put his hand on me and just say, "I'm sorry."

He told me that the CT Scan and EEG had come back normal and that the nerve study on my arms was looking normal as well. He told me he had an idea of what was going on with me, but would talk to me more about it the next day when I came back for the nerve study on my legs.  He ended the appointment by telling me that I was "legit." That this was absolutely real. That I was "normal" and not making it up. He told me the hardest thing he has to do is figure out if someone's symptoms are real or psychological and he said he sees a lot of people with both problems. He said, "I have gotten to know you and learn about you. You are positive and happy. You get frustrated, but you are legit."

I came back the next day, with my husband and my mom, to do my last nerve study and to learn my diagnosis. We had a good visit and the nerves in my legs were healthy. When he finished the test he said he was sure about what was going on with but he needed to check on the results of my blood work.

As he was looking at the results on the computer and said, "Hmmm, this is interesting."

All I could say was, "What? Is it normal? Like everything else?"

And he said, "No."

My blood work supported his theory that I have an autoimmune disease. The blood work didn't prove which disease I had, but it proved that I had antibody's that were attacking my central nervous system causing these problems.  My Dr. knew exactly what autoimmune disease he was going to classify me with. He drew out a spectrum on paper to explain what he believed about me.  This is what he drew:



 In med school, my neurologist studied under a doctor who was an MS guru. He felt my symptoms were enough to classify me on the spectrum of Multiple Sclerosis. My medical history documents all of my good and bad cycles or my "attacks" and they are consistent over the years and progressively getting worse. I don't think he thought lightly about placing me on the MS spectrum. After a lot of reading, I know there are many neurologist that won't even say "MS" to a patient unless they have the lesions on their brain and their spinal tap is positive.

My Dr. told me to be grateful that all my tests are normal so far, because it provides me with a healthy body to try to fight the autoimmune disease attacks, but that he also knew it was hard to deal with these "duck bites" that immobilize me. I will never be in full control of my limbs at any given time throughout my life.  Luckily, because I don't have the lesions on my brain right this moment, I am not currently at risk of paralysis and other life threatening symptoms that people with MS struggle with.

However, there is no way to say that I will stay on this place on the spectrum forever. MS is a progressive disease for most people. I cannot say that I have a 100% chance of never getting lesions. That is something only time will tell and I am still really young.

My doctor knew I didn't want to take any medication, so he asked if I would try a natural supplement that would be safe for me to take with pregnancy. It is called SAM-e and is actually used to improve "mood," but testing has shown that it helps strengthen the myelin sheath around the nerve to help fight the antibodys that try to attack your nervous system. He kindly said that even though he felt I wasn't fully depressed, he knew I had anxiety and got frustrated over my symptoms and felt this supplement would also benefit me in that area. He told me it would take 3 months before it fully worked. I am giving it a try. So far, it makes me tired and it upsets my stomach.

I left my appointment feeling so much "lighter" than I had in a long time. The three things I wanted (to have a name for what I had, to know whether or not I was crazy, and to see if having another baby was a possibility) were answered.

I thought back to the prayer I had so desperately said in October, asking my Heavenly Father if something was wrong with me. I knew there was something wrong and I felt that MS was definitely a possibility. As I thought about the appointment that I had just had and the diagnosis I was given, I felt that the answers to my prayer in the car that frustrating night were to prepare me for this day and this diagnosis. It prepared me to not second guess what my Dr. was telling me. It prepared me to trust him. It allowed me to listen to what he was telling me and to have peace inside confirming that it was ok to believe him and to not have fear in his diagnosis. Heavenly Father's love for me and watch care over me led me to a Dr. that I finally trusted and knew would help me.

I am so thankful for answered prayers.

Wednesday, May 2, 2012

MS 3: Panic

Have I mentioned that a babysit the sweetest little baby during the days? I started watching him at the end of February when he was just 6 weeks old (M-F, 8-5ish). He and my son Ryan are 11 months apart. Talk about a crazy time at this house! My friend is a school teacher and needed someone to watch her little one until the end of May. My body wasn't working the best, but there was something inside of me that knew I had to help her out. She had no family that lived close enough to watch him paying for day care is just so expensive. I felt strongly that this was a service I could do for her to help save money for their little family.

Several people were skeptical of my choice to offer help. My legs weren't very trustworthy and I didn't know what other symptoms would just appear.  I was often really fatigued and it was already hard for me to just keep up with my own boys. But if I have learned anything from my life, it is to never avoid the whisperings to your soul that tell you what you should do.

The first few days were really rough. Hunter and Ryan really struggled with the shared attention this little baby was getting. I had to figure out how to get the baby and Ryan down for a nap at the same time in the morning, and then all 3 boys to take a nap at the same time in the afternoon. I had to learn the hard way that my house was going to be destroyed by my two sons in the the time it took for this little baby to drink his bottle. I had to learn how to rock all three kids in the rocking chair at the same time so no one would feel left out. Some days it felt like I was cycling through duties for each child and never focused on myself- first Hunter, then Ryan, then baby, Hunter, Ryan, baby, baby, Ryan, baby, Hunter, etc. My husband quickly learned that there were going to be many days that the house wasn't clean and the dishes weren't done and the only thing that I accomplished was taking care of the emotional and physical needs of each child.

A couple weeks into my babysitting, I noticed something very interesting. When I was babysitting, my body worked well. I could take care of the 3 kids with little to no physical problems or limitations. However, after the baby was picked up, it was back to my old weird self, complete with leg issues, etc. The nights and weekends were exceptionally bad. Also, when I babysat, this sweet little baby was such a good little guy! He ate, played, and slept. He seriously sleeps about 2/3 of the time he is at my house. As I was pondering about this, I had some strong feelings about what it means to make a sacrifice.
 
I felt that it was a sacrifice for me to watch this baby. It was a sacrifice for my body and it was a sacrifice for my boys as my attention for them had to be shared.  It was a hard thing that I felt I had to do. I didn't know how my body was going to hold up when I told my friend I would babysit, but I offered my help because the Spirit told me to.

Just a couple weeks ago in Relief Society there was a comment about sacrifice during the lesson saying, "To sacrifice is to give up something for something better" and I have learned that to be true. Because I was willing to babysit, I felt that Heavenly Father was blessing me. He allowed me to have a body that worked, during the day, to help me keep good on my promise because I was obedient. He helped me where I lacked and needed it most. But when the baby was picked up, and the responsibility was over, my body went back to it's weird routine of not working well. I was and still am so grateful for that extra help during the day. We all know I need it.

2 weeks before my neurologist appointment and 3 weeks after I started babysitting, Chuck and I had plans to go on a double date with some good friends on a Saturday. We were meeting up to see the Hunger Games and then go to dinner. The Hunger Games had not been out very long and the theater was packed. The only seats available were on the 3rd row and I had the isle seat. While the movie was playing, I got that warning feeling that I wasn't going to be able to move my legs. They instantly became so, so heavy and I couldn't lift them.

"This is so not happening right now." I told myself. We were on a date! In public! With friends! This date had been planned for over a month and I was not planning on it being ruined. Whenever my legs would "release" and I could move them again, I kept switching positions in my chair. I figured if I could keep them moving, they wouldn't freeze up. No such luck. I had a hard time focusing on the movie. I kept thinking about how things were going to play out when it was over. This was really one of the first times I hadn't been able to movie in public and I was getting panicky.

When the movie ended, we all stood up to exit the theater. Because it was a full house, everyone seemed to be trying to get out at the same time. My whole row was waiting for me to exit. I took a couple steps and then I froze. I could.not.move. I few people brushed against me and then some starting cutting in front of me. I was holding everybody up. I started having this flash back to when I was 20 at BYU. I was remembering the awful experience when I couldn't move my legs for the very first time. I had been studying with friends in the library and I needed something from the bookstore that was attached to the Wilkinson Center. When I was in the bookstore (up a few flights of stairs on the top floor) it was in between classes and my legs froze in the flow of students walking and I couldn't move. Students kept pushing into me and then had to move around me. It was so embarrassing. When I was able to move my right leg (left leg was still frozen), I hobbled through the bookstore, down the flights of stairs, and to the library on campus where my backpack was.  Thankfully, I had some really great friends at BYU and my friend Bryan had to drive me home to my parents house in Spanish Fork from Provo. It was an awful night. I wasn't able to move my legs for more than 48 hours and I had the worst nerve spasms to go with it. I woke up with bruised legs and feet.

Back to the theater... something about remembering that night from BYU and feeling like everyone in the theater was going to run me over (which I'm sure they wouldn't have) sent me into panic mode. I was scared. I kept telling Chuck, "Just get me to the bathroom. Just get me to the bathroom." I guess I hobbled with the limited use of my right leg and made it into the bathroom stall where I had my first full blown panic attack.

I couldn't move my legs.
I couldn't move my arms.
The room was spinning.
My heart felt like it was going to explode out of my chest.
I felt like I was going to pass out.
It was so awful.

Thoughts kept rushing through my head: "I can't believe my husband is married to such a weirdo." "I am so embarrassed for him!" "How am I going to get out of here?" "I can't move... anything!" "My husband is going to have to come in the girl's bathroom to check on me." "What is the couple we are on this date with going to think of me?" "What are people in the bathroom going to think of me?" "HOW AM I GOING TO GET OUT OF HERE?!!!"

And then I realized I was having having a panic attack.

 I started telling myself, "You can control your legs... you can control your mind... you can control your legs... you can control your mind.  Breathe... breathe.... breathe... breathe.... And then I prayed.... "Heavenly Father... you can control my legs.... you can control my mind.... help me breathe.... you can control my legs.... you can control my mind.... help me breathe....

And with help, I calmed down. Amazingly, this whole experience only had to have taken about 4-5 minutes, but it felt like forever. I jaggedly walked to the sink to wash my hands feeling like everybody was staring at me, as if they knew what had just happened in that stall. When I left the bathroom, I didn't want anyone to know what just happened. I exited the bathroom and found my little group waiting for me.  I started talking about the movie- how I liked it, but thought it lacked some important things from the book. Our friends told us where they wanted to head to dinner and as we headed our separate ways to get into our separate cars, panic set in again... how is my body going to act at dinner? What random surprised did it have in store for me this time?

Enter panic attack #2.

Tears instantly started flowing out of nowhere and I was shocked when I felt them on my cheeks without my approval. I have never just cried without realizing it before. My husband looks at me very concerned and all I could say is, "Get me to the car... just get me to the car. Please get me to the car... just get me to the car."

The poor guy. I am finding this is such a hard thing for him to try to fix. There really isn't many ways he can help me. I told him I just needed time to breathe and I sarcastically (ok, seriously) mentioned what a screwed up wife he had.

"You are not screwed up. You are normal. Everyone has problems. I don't think there is anything wrong with you. I wouldn't have married anyone else. I love you." If you want to help someone who is struggling, say those words. It works.

He went to dinner and I couldn't move my legs under the the table the whole time, but I just let it go. I was learning that I had absolutely no control over it and I wasn't going to let it ruin my night. After a great dinner, we went home and I was emotionally and physically exhausted. I went to lay down and my body just started flipping out. It was as if I could feel everything little nerve movement from my hips down. My legs felt like they were on fire. I got out of bed and moved to couch. I couldn't sleep. It all just hurt so bad. I finally fell asleep out of exhaustion at 4:30am.

I didn't make it to Sacrament Meeting or Sunday School, but I pulled myself out of bed to go to Relief Society. My good friend was teaching and I wanted to be there. I know I looked worn out and scary, but I just needed some spiritual goodness in my soul. I tried to avoid people at church, but one good friend asked how I was and when I quickly walked past her without looking at her and left behind an "I'm fine," she called my bluff and then tears that I was so desperately trying to avoid came. again.

For some reason, I think I have to be strong and hold everything inside. I felt like if I cried, it showed that I was week and couldn't handle the problems that were given to my body.  But that moment I was very weak and very tired. Everything was just so hard and frustrating.  The only thing I could think about was the 12 days until my neurologist appointment that I had waited months for. I seriously needed some help.

Tuesday, May 1, 2012

MS part 2: Three Things

After I was released from the hospital and my spinal headache was fixed, it only took a few days to get my full strength back and to get back to normal. I was frustrated that they couldn't figure things out, but happy to be using my legs again and taking care of my family. I started to play volleyball, celebrated my 26th birthday, had a great Christmas, and started going to spin class. At this point the only thing I really struggled with was sleeping. There were many nights I couldn't get my brain to calm down. I just kept thinking about what had happened with my legs and why no one could figure it out.

Life was pretty good until January rolled around. My back started having some major issues and it hurt all the time and it was starting to go numb. I made an appointment with my back doctor and we talked a long time about my hospital visit and all the weird things that were going on with my body. He told me he wanted me to take some medication to see if it would help. I instantly declined. I had been having feelings that I needed to prepare my body for another pregnancy and taking medicine wouldn't be a possibility. When I brought it up with my Dr. he was really surprised that I was already making plans for another child.

"Really? Another one? Why?"

I was kind of shocked when he wasn't supportive of my choices and little tears brimmed in my eyes. I started feeling the feelings I had struggled with for the past 8 years- Doctors who didn't understand me or my body and the pressure to try some new medicine to "fix it."

He could sense my frustration and then said,

"Are you depressed? Maybe we should find a medication for depression that could help you and some are safe to take when you are pregnant."

Now I was frustrated. 1) I am not depressed 2) Didn't he hear that I didn't want any medications and 3) The last time I had taken a medication for depression (which they gave me to treat fibromyalgia), I turned into "Zombie Stacie"- lifeless, blank, boring, lonely, etc. The thought of "Zombie Stacie" just makes me cringe. There was NO WAY I was going to take medication for depression.

As an alternative to my strong feelings about no medication, I was written a prescription for physical therapy, to help strengthen my back and a referral to get me into a neurologist that was personable and would help me. My Dr. made me promise that if I ever couldn't move my legs again, I would come in immediately.

For the rest of January, I did my physical therapy and loved it. It really helped my back and my body and it helped ease the burden of carrying around my 30 lb. 1 year old and my 38 lb. 3 year old.

In Mid January, one of my volleyball games was cancelled and my husband and I decided to go and see a Jon Schmidt concert/fundraiser at the concert by our house. We hurried and got a babysitter for the boys and made it to the concert just in time. Mid way through the show, I got this scary/familiar feeling, like a wave rushing down my legs, like a warning that I wouldn't be able to move soon, rush down my hips, legs, and to my feet.

I could not move. Again.

I had this feeling of panic at the concert. What I am I going to do? I can't move. Will I be able to get out of here? How I am going to get home? Chuck and I drove 2 separate cars- I came to get tickets and Chuck took our boys to his parents to be babysat. When the concert ended, I couldn't move my left leg, but I had a little use of my right. I hobbled out to the car and Chuck helped push me in and closed the door. I immediately called my neighbor Kelly and asked if she would just stay on the phone with me, while I tried to drive home with the limited use of my right leg. The high school is only a couple blocks from my house and it would only take me 2 minutes to get home. I laughed with her on the phone about how ridiculous the whole thing was and we both laughed at the thought of wondering how I was going to get myself out of my car and into my house from the garage. I made it home safely, practically fell out of my car, and hobbled into my house and straight onto my bed with my computer where I just started "googling" anything and everything about the symptoms I had. Finally I took a melatonin to help me fall asleep because my brain would not shut down. I had too many questions and I just wanted answers.

When I woke up, I still could not move my left leg and had about 50% strength in my right leg. I called my Dr. to try and get in to show him what was going on. I was told he was doing "procedures" and would not be in the office. Of course this would happen to me! How was I supposed to get medical advice if he wasn't going to be in the office? My husband informed me it was time for him to go to work and I was left alone to take care of the boys with a nice gimp leg. I dragged my left leg around the house and into the kitchen. What a disaster! I hadn't cleaned up dinner from the night before because we were in a hurry to get to the concert and then when I got home I went right to bed. Ryan was covered head to toe in yogurt and so was the floor and Hunter was running around in his underwear. I dragged to leg back to my room for one more google session when I heard the doorbell ring. Then I hear Hunter say, "Come on in!"

Panic sets in! What strangers did Hunter let into my insanely messy house? Am I even wearing a bra? My boys look homeless! I look homeless!

I dragged my leg into to living room to find my Visiting Teachers, realizing I had made an appointment for them to come and visit me the previous week. What a tender mercy! They saw that things were rough and offered to babysit my boys and brought me dinner. They were so kind and thoughtful as I started crying out of frustration that I couldn't keep up with my house, I felt like a bad mother for not being able to fully take care of my children, and I was SO FRUSTRATED by not knowing what was wrong with me. I believe Heavenly Father knew I needed help and comfort that morning and he blessed with with two ladies from my church who came to check up on me when I needed it most.

With their help, I was able to work out a babysitter so I could drive down (remember I had a little use of my right leg) to show my physical therapist what was going on. He asked me if it was MS and then when I said my tests were normal, he was really confused. I came home frustrated that he had never seen anything like that before. I laid on the couch for the rest of the day and eventually fell asleep. When I woke up the next morning I could  move. Hallelujah!

I had waited 3 weeks without news about my referral to the neurologists office. Finally I called me Dr.'s office to ask what the hold up was and they had forgotten to fax over the referral (seriously?!). I couple hours later I got a call from the neurologist office saying the Dr. wanted me to get an updated spinal MRI and that I needed it scheduled immediately. I made arrangements for a babysitter and headed over to get the MRI.

I was starting to get really frustrated by the medical bills that were starting to pile up. Luckily, it was January and all the money to pay for physical therapy and this MRI would go towards the new deductible for the year. That is until my husband called me, a day or two after the MRI, saying he just found out our insurance would be changing on the first of February with his company, which meant that $1,800 I just paid to go towards my deductible for the year now meant nothing. I was so frustrated. Our insurance switched to a high deductible plan where we would pay for everything out of pocket until we met our deductible. I knew I would have a lot of Dr.'s appointments and testing coming up, so I knew we would be hitting our $3,000 deductible quickly. Add the $1,800 from the month of January (ugh!!) and I knew my total medical bills would be $4,800. I started crying. I felt like a financial burden to my family. We still needed to finish our yard, and the basement, and if I wanted another baby we would need a bigger vehicle soon. The instant stress of finances was on my shoulders and it was my body's fault that so much money was disappearing in an instant.

Once February came, my symptoms started increasing like crazy. I started not being able to move my legs about once a day, then twice a day, then every time I wanted to stand, etc. It was becoming a "regular" thing not being able to move my legs. I got neck shocks here and there. I felt like my brain function was decreasing. I wasn't sleeping well at all.

I happened to have a Foot Dr. appointment and even he was surprised I didn't have MS. He then asked me about medication, I told him I didn't want any because I wanted another baby, he told me I was crazy, I got upset, etc. Then he told me, "I think you need to see a Neuro Psychiatric Dr. I think this is in your head." which instantly made me feel like I was crazy. I held my tears until I got in the car and just broke down.

He thinks I'm crazy. I started to believe him.

Now I really wasn't sleeping well and things were just getting worse. I decided there was only 3 things I wanted from all of this:

1) To find out what was wrong with me
2) To find out if I was crazy- if it was all in my head
3) To find a Dr. that would work with me to have another baby

That is all I wanted.

I found out that the neurologist I was hoping to get into (and had already waited 2 months to be referred to) was not accepted under my new insurance that we just received (I so was not a fan of the insurance switch and was still mad that it switched in February instead of January). I then was referred to a neurosurgeon in the same office, and spent a month waiting for an appointment, but was refused because I was not "surgical." Finally, I get a phone call saying I have been referred to one last neurologist that would take me, but I had to wait until April for the appointment. I was so desperate that I agreed and in that extra month of waiting I really struggled.

I struggled with another Dr. telling me that he was surprised I wanted another baby (is two years apart for children really that crazy or does he just think I can't handle it?) I struggled with the thought that I might be a crazy person, making this up somehow. I still struggled with the feeling that I knew something was wrong with me and that no one could figure it out. I struggled with the amount of money we were going to have to spend on Dr.'s and tests. I struggled physically, and emotionally, and spiritually and often I would ask myself, "Am I depressed?" "Is this what depression looks like?" "Is this what depression feels like?" And I would pray for help.

Tuesday, April 24, 2012

MS Part 1- "Normal"

*Warning: This is what I have been dealing with the past few months. I found this very therapeutic to write, but it is really long.
 
As you can see from my medical history, I had a few really good years in the middle.  My nerve/back pain was occasional and bearable and I was enjoying married life and being a mother. I had gotten off of the medicine (for Fibromyalgia) I was taking when we had decided to get pregnant with our first, Hunter, and I was doing really, really well without it. My husband had yet to see me in any intense pain (besides the birth of our children) and it seemed that all the warnings he had been given about "what life could really be like" being married to me was just something that had blown away with the wind.

Six months ago, in October (2 months before my 26th birthday) things just weren't right. I remember when I was sitting on my living room floor folding laundry while my 2 boys were napping. My brother, Sean, had just returned home from his 2 year mission to Japan and he came over with my mom to borrow a movie. I remember being so tired because I hadn't been sleeping well. My arms were "heavy" and hard to move. My tongue would go numb and I honestly felt like my IQ was dropping. Words would not come out how I had intended them to and I was frustrated.

Sean and I were having a conversation when all of a sudden I had this electric surge strike me from my neck all the way down to my foot on the left side. I have never in my life felt such pain (100 x's worse than being "tased" for my EMG). I dropped the laundry and screamed. Tears brimmed in my eyes and embarrassment engulfed me as I had no control over my body. The look on my little brother's face was so sad. My mom later told me how shocked he was that that was the life I lived and was used to. I ran to the bathroom and you could see a red mark that traveled from my neck (the starting point) down my chest, etc. to my feet (the end point) where the electric surge had just occurred.

I am used to nerve pain. I have lived with it for 8 years and because of it, I now have a really high pain tolerance.  But this electric shock, it was new and scary and so awful and it happened almost every day for over two weeks.

It was then that I started getting anxiety- what if I got one of those incredibly painful shocks in public? What if I screamed in public? What if I were to give the prayer in church and then get shocked and then scream during the prayer? It is a scary thing when you have no control of what your body does and those feelings of anxiety were so real for me. It was around this time I started to get a feeling that something was really wrong with me.

One night, after a long day trying to take care of my boys with a body that just wasn't cooperating, I was headed to the store and I was telling Heavenly Father about my day and how my body just wasn't working. My aunt within the last 3 or 4 years had been diagnosed with Multiple Sclerosis and I had been reading a lot about it. I could see MS as being a possible diagnosis for me and I wanted to get Heavenly Father's opinion.  For those of you who aren't familiar with Mormon beliefs, I believe in personal revelation- that Heavenly Father will answers my prayers to help me with my personal needs. I pulled the car over and told my Father that I thought something was wrong with my body and I instantly felt that was true. I asked if it could be Multiple Sclerosis and I felt strongly that it was a definite possibility.

In Mid October, we were scheduled to have our family pictures taken. My body had been acting weird the morning of pictures, but I was getting used to it. My biggest fear was that I would just looked really fatigued, but if I was wanting an accurate picture of what life was like at this stage/age then so be it. Amazingly, we were able to get dressed and ready on time (I think) and headed up Deer Creek Canyon for some pictures taken by my dear friend (no pun intended) Stephanie Tueller. We had a blast during our session and I remember feeling SO HAPPY. This was a good day!

After pictures were done, we came home and grabbed a pizza. Chuck headed off to do some church work and my mom (who I always bring for family pics- best way to get my boys to smile) was hanging out with us enjoying dinner. Hunter, who had just turned 3, had gotten up to go to the bathroom (yay for being potty trained!) and needed help snapping his pants. I headed into the bathroom, did my motherly duty, and as I tried to walk back to the kitchen table I could couldn't move my legs. It was like my legs were heavy, like cement, and like they were bolted to the ground. I could not move them no matter how hard I willed it.

My mom noticed my struggle and asked what was up. I told her I couldn't move and I just stood there. She asked if it was a nerve spasm and I said no. Nerve spasms are normally very painful and this time I couldn't feel anything. I decided to stand there until I could move again, which thankfully, was about 1 minute later. I got the feeling back in my right leg and then eventually my left. Thankful it was over, I went back to eating my pizza. I got a text on my phone and when I tried to walk to my phone, my legs stopped working again. Soon they recovered, just in time for it to happen again. Chuck came home and I asked if he could call our neighbor Garrick over to help give me a Priesthood blessing.  Things calmed down for a bit and then I got a text from my friend Stephanie saying she had a little preview of our family pictures up on her blog. As I grabbed for the computer my legs stopped working again and I was getting really frustrated. Why couldn't I move my legs?
These are the beautiful pictures Stephanie had posted:






When I saw them, I was filled with so much gratitude in my heart. I had had a beautiful day and I have such a beautiful family. My boys were happy and loving life. I thanked Heavenly Father for the tremendous gift of this little family I had been blessed with. How could I be so lucky?! I was instantly filled with optimism and love and the fear and frustration I had about my legs melted away. I will always be thankful for the gift Stephanie gave me that night.

I was so pleased with the pictures that I wanted my mom to see them right away. As I tried to switch from one side of the couch to the other to show my Mom, my legs quit moving and I ended up sliding straight to the floor, with my head stuck between two couches. This really freaked me out and my body started to spasm all over head to toe, like a mini seizure (but not really a seizure). I wasn't able to move both of my arms and I just started to cry. Here I was, crammed between two couches, having nerve spasms all over my whole body and I was unable to move my arms and my legs (it was later explained to me that this was probably an anxiety attack). My mom looked at me sweetly and very tenderly told me it was time to go to the ER. I knew I couldn't object.

After my neighbor Kelly came to stay with my boys while they were sleeping, my mom and Chuck helped me get into the car. I remember laughing about how ridiculous I must have looked laying on the floor like that. On the way to the hospital I told Chuck some very specific things:
1) You will probably hear that I have MS. Brace yourself.
2) I am OK with having MS. It doesn't scare me. I would rather know and have a game plan than not know what is wrong with me.
3) One day, I may end up in a wheel chair. How are you going to lift me into bed? You better work out.
4) There is only one thing that really does scare me. What if one day we move into a new neighborhood and a new ward and all they see is a girl in a wheel chair. And they don't know how capable I am? I don't ever want people to think that I am not capable. MS or a wheel chair will not define me. It might slow me down, but it will not dictate what I do.

When we got to the ER, I was able to slowly walk into the hospital by myself. The second the automatic doors closed behind me I could not move my legs and I was frozen 20 feet away from the check in desk (From this point on, I was unable to move my legs for 3 days straight). The girl looks up and rudely says, "Excuse me, but you have to actually come to the desk to check in!" in which I told her I couldn't move both of my legs and then she freaked out and ran to grab me a wheel chair. I remember a cute little 3 year old girl, so sick, in a princess nightgown, that I sat by. We talked about her favorite books and movies and Disney characters and I made her laugh and smile. I loved helping her feel better and it was better than worrying about my ridiculous legs.

They took me back and asked me a million questions- my medical history, what other symptoms did I have, could I feel this, could I feel that, can you feel these needles, etc. (For the record, when I am unable to move my legs, I still have feeling to them- you can touch/poke me and I feel it all). The Dr.'s main concern was MS and they told me I would have lots of testing done in the morning. I had a brain, neck, thoracic spine, and lumbar spine MRI, a spinal tap, and loads of blood tests performed. My heart was being a bit goofy so I also had an EKG that showed that my heart skips a bottom beat every now and again (seriously, another thing that doesn't work right?!)

My spirits were really positive and happy at the hospital. I made friends with all the nurses, I ate delicious hospital comfort food cake, and was able to laugh about my increasingly weird and messed up body. I was doing pretty good until 3 things happened:

1) I had a couple Dr.'s and nursers giving me a hard time about being a mom- how could you have 2 kids? Why would you want 2 kids at this age? Did you not have plans for your life? (Yes, I have 2 kids. Yes, I love my kids and miss them, and it doesn't help that they are being taken care of by other people while I am here, without them, in a hospital bed missing them. Are we really having this conversation? Also, I am SO thankful that I already have 2 kids here before my body decided to freak out!)

2) You are just too young to be going through all of this. It is such a shame, etc. etc. (Thanks for making me feel great about myself!)

3) ALL OF YOUR TESTS ARE NORMAL- (complete shock and flood of tears)

How can my tests results be normal? All of them? And nothing? ARE YOU SURE?!

What if this happens again?

Do you think I'm crazy?

Are you seriously sending me home without figuring this out?

What is wrong with me that I am actually disappointed that I am normal?

I felt so strongly that Heavenly Father told me something was wrong...

And so they sent me home. Telling me to be happy that I didn't have cancer, or a tumor, or something "big" that would kill me. I had been in the hospital for 3 days before I could walk again. They told me that if it happened again, they wanted me to come back so they could "monitor" me. But there was NO way that I was going to go back to a hospital, where tests had already been done and declared "normal" to lay in a bed and be babysat thinking it was all in my head, when I could do that at home with out the expensive bill to pay.

They wanted me out of there so badly (I'm not going to lie, I wanted to leave too), that they got me up too soon after my spinal tap to do physical therapy so I could meet the requirements to go home, that I ended up getting a spinal headache hours after being home. I had to live with it for 2 days before they said I could go back to the ER to get a blood patch to get it fixed (worst medical experience of my life- a story for another time).

Those were hard days. I was so sure about those feelings I had about something being wrong with me and here I was, sitting at home, frustrated by being normal.

Who does that?

*Up next, MS Part 2- "3 Things," where we talk about life after the hospital and my diagnosis.

Sunday, April 22, 2012

Diagnosed...

Let's be honest. I am not good at updating this blog. As a matter of fact, I tend to purposely stay away from it because I am nervous about posting what "really" goes on around here. I stopped blogging because just doing cute posts about my kids isn't the whole story of my life and if I wasn't willing to share all of it, I wasn't going to share any of it. I became afraid of this space- afraid of looking weak and vulnerable. However, my favorite blogs to read are the ones that are REAL- blogs that convey the good and the bad, the easy and the hard, the cute and the ugly. So maybe, if I lay it all out there, this may become a more populated space.

Sitting in my neurologist's office two weeks ago, I had to give a thorough account of my medical history (which, took a good 2 hours). It went something like this:

18 yrs. old: fatigue, lack of REM sleep, pain in head, neck, back, legs, nerves, burning feet

19 yrs. old: fatigue, lack of REM sleep, pain (everywhere), nerve spasms in lower back and legs, nerve spasms that cause bruising in legs and feet, unable to move legs (one time), burning feet, surgery on both knees, physical therapy

20 yrs old: Diagnosis of Fibromyalgia and Degenerative Disc Disease (DDD), all above symptoms, pinched nerves, swollen tail bone with monthly cortisone shots in tailbone joint (with surgery set for tailbone removal), and about 10 different medications that turned me into "Zombie Stacie"- tired, lifeless, nauseous, and shaky.

21 yrs old: 4 days after my birthday I went through the Salt Lake Temple. My body went through a miraculous change- no longer had major symptoms and no longer needed tailbone surgery or medicine. That was a very sacred and special day in my life and I have so much gratitude for the healing and blessings I received that day. I occasionally would have a few nerve spasms, but they were short and not very painful. This was also the year I met and married my husband and graduated from BYU.

22 yrs old: Gave birth to Hunter, had occasional nerve spasms

23 yrs old: Occasional nerve spasms, occasional pain with my DDD.

24 yrs. old: had some major pain/issues with my DDD and had increasing nerve pain. Really starting to believe this is not Fibromyalgia.

25 yrs old: Gave birth to Ryan, tail bone problems, electric shocks from neck to feet, numb tongue, leg/arm weakness, slow brain, extreme fatigue, nerve spasms, and then the lovely hospital stay where I couldn't move my legs for 3 days. Had brain, neck, lumbar spine, and thoracic spine MRI's, insane amounts of blood work, spinal tap, and then a blood patch to fix spinal headache from spinal tap.

26 years old (now): Can't move legs on a regular basis, electric shock in neck, nerve spasms in neck/legs/feet, burning legs/feet, severe headaches, numbness, extreme exhaustion, panic attacks from not being able to move in public places. 

After discussing this medical history with my Dr. he immediately scheduled me for a CT scan, EEG, more blood work, and 2 nerve conduction studies (also called "EMG"- which I describe and being "tased" over and over again- my least favorite test), which were all completed last week.

As you can see, I am a wreck. But finally, after 8 years, I have been diagnosed with Multiple Sclerosis. More to come on the diagnosis and my thoughts/feelings about all this. I will say, at the moment, that my case with MS is not life threatening.  It's just really, really annoying.

Monday, February 20, 2012

One in a Flash

Ryan turned one on February 11.  My dad was out of town for work, so we had his party last night. Here are pictures of the party. The theme was "One in a Flash."  I felt like this past year has been the fastest of my life. It seems impossible to me that Ryan is so big. I remember vividly bringing him home from the hospital. How can he be 1 already? So, I found this theme described my feelings towards Ryan's birthday perfectly.

















Ryan is such an adventurous little boy.  He has grown so fast and I just can't keep up with him. Crawling at 6 months, walking at 9 months, climbing at 12 months on everything. He is a mover and has to be do doing something with his hands (especially using them to drive cars around the house going vvvvrrrrmmmm). He MUST feed himself- no negotiations -and it always resorts in a bath after each meal. He is in the 95% for head, weight, and length. He adores his brother and loves to wrestle, tackle, and sit on Hunter daily. Funny thing is, Ryan thinks that wrestling, tackling, and sitting on someone is the only way to interact with other kid/babies. We are still working on that, little girls don't always find that to be endearing.  Ryan loves to give kisses and loves for me to hold him when he doesn't feel like running around. However, he does not like to cuddle when is tired. He wants to be put right to bed. He has 9 teeth- 7 in the front and 2 molars. He has the cutest curly hair and has had 5 haircuts so far. His favorite words are "mom, dad, yay, amen, bite, hello, hi, dance, ni ni (ni-night), down, up, yes" and for two days straight he said "Hunta" for Hunter and then he hasn't said it since.  Ryan is a joy and I can't imagine life with out him.  It is a blessing to be his mom.

Wednesday, June 15, 2011

Life...

 Warning: Picture Overload!!
Also, Ryan's newborn pics are in the post below.

Ryan's Baby Blessing - Sadly not one picture I have was of Ryan alone in his outfit. Oops! Pretty sure he is 8 weeks here.






 Hunter's first time dying Easter eggs


 The Easter Bunny gave him paint supplies! Hunter loves it!


 Ryan ready for church


Reading "The Potty Book"- trying to promote positive potty vibes

 This is how Hunter felt about the potty most of the time.  This is the first day of potty training.  He was so mad at me for making him sit on it!

Success! He was so proud of himself and was hooked from then on.  He rarely had any accidents and if he did it was because I was feeding Ryan and could not get to him fast enough.  It took 3 days to potty train this boy.  I am one lucky mom! Now he loves to "stand and squirt," but I will refrain from posting pics. (Probably too much info. sorry.)

 Reading his Book of Mormon Scripture Reader

He loves his big boy underwear! This is what he looks like most mornings.
 1st time in the Bumbo

 Gettin' chubby!


 Playing in Grandma's Backyard - How did Hunter get soooooo big?!


 



Ryan @ 4 months old. Stats: 27.5 inches (99%) and 18.8 lbs (96%).  He is the HAPPIEST baby.  He smiles and laughs all day long and is in love with Hunter. We call him "Mister Smiles."  He goes to bed between 8 and 9 and sleeps until 6:30 or 7:00am without waking up in between.  He takes a 2-3 hour nap in the morning and about 3 small afternoon/evening naps that are about 45 min. each.  I am excited for the day that we can transition to one good morning nap and one good afternoon nap.

In other news we are finally finishing our yard! Cement added, fence is in, sprinklers are almost done, and soon to come are the grass and plants! We are so excited!!  This project has taken most of our time and resources.  Hopefully pics will come soon.