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.


Ryan & Amanda said...

Stacie, you are so strong and inspiring! Thank you so much for sharing your story, I hope you have peace and comfort and that you are able to do the things you need to as a mom because that has to be so frustrating! You have such a beautiful family!!! And you are definitely SOOOO capable, I don't think anything could ever stop you!

Lindsay said...

Amen to the comment above mine. I don't think anything could ever stop you. But I do know how frustrating getting doctors to understand what's going on. I guess that's why it's called practicing medicine. I am so glad that your Visiting Teachers came by when you needed them most. I love reading your story. It is real, and it inspires me as well. You do hard things.

Bethany said...

I don't think that having kids 2 years apart is crazy at all. I'm just sorry that all your doctors are telling you so. My doctor could never tell me that because she has been having her kids 18 months apart (her oldest just turned 2 and she's pregnant with her third). I'm sorry that you're going through all of this. I'm glad that your VTers are on top of things, and I'm sure that you're on top of things as well. You are wonder woman. Keep up the great work.

Kristen said...

Stacie - thank you so much for sharing your story. You are such an inspiration. I don't know you all that well, but from our days in the ElEd program at BYU, and from reading your blog, all I can say is "wow". You are strong, capable, and real. You're in my prayers. And one more thing: your boys are so stinkin' cute!