ALS with Anna Vol.6

Trigger warning this is raw and emotional. I’m letting you deep into my heart and soul on this one.

After leaving Dr. Pulley’s office we were still in shock. We had so many questions: Why me? I have three boys to raise, they need their mama. My worst nightmare had come true. I wouldn’t live long enough to raise my own kids. That rocked my world the most. I was their main caregiver. No one could take care of my boys like me.

However, I was not scared of dying. I know where I’m going. I know when I leave this world I will be better off than everyone I leave behind. At that time I had just had an aunt that passed very suddenly. I was still grieving her sudden loss. One of my first positive thoughts was that I would get to be with her sooner rather than later, and it brought me a little peace. I knew I was going to be fine, but I was most worried about the effect this awful disease was going to have on my family. I remember telling Jason on the way home I was going to be fine, and I meant it. I wasn’t just telling him that to make him feel better. I knew, God told me I was going to be okay.

Sidenote: The one thing you don’t realize about getting a diagnosis of a terminal disease is you start the grieving process immediately. I didn’t realize till later after talking to a therapist that I was grieving my own loss of life. Jason was grieving losing me too and grief comes in stages. Finding out you are going to die is a very complicated process. You have ups and downs, sadness, anger, dental and acceptance. They come in different stages and come and go. It is different for all people and everyone is different. I know Jason and I are definitely grieving differently. So some of this is going to high, low, acceptance, dental, and back again. Can you say #rollercoaster!

The next step was telling our family. Especially since we knew many of them were waiting by the phone to know what we found out. What do you do? Put it off, so we can tell them in person? Emotionally, we couldn’t. Still, how do you tell the ones who love you the most this information over the phone? Now, mind you I’ve kept it together thus far. We are probably an hour or more out of Jacksonville. Jason and I have been talking and processing everything, as Jason drove. I decided it would be best to tell Jason’s mom and step dad first. I called her using the Bluetooth in our car. She answered and I said, “ Well we didn’t get the answers we were hoping for, I have…” Then I finally broke down. I had yet to actually verbalize the words, I yet had to openly admit I had ALS. Words are a powerful tool, and to actually tell someone and say “ I have ALS” was extremely hard that first time. I honestly don’t remember if I finally said it or if Jason did. Then I told her what it meant to have ALS.Because ALS isn’t widely known. Unfortunately I think it’s becoming more widely known. Thus my reasons for starting this blog. Do you know the word that stuck out the most when Dr. Pulley was explaining to us what ALS was: TERMINAL. When he told us that I knew how bad it really was. So I had to use that word to explain the gravity of the situation. I now hate that word. It is a heavy word for me. That is what ALS means to me….terminal. That’s a lot to soak up and accept from one little word.  

Then I had to make the phone call I dreaded most telling my Aunt Brenda. Of all days it was her birthday. She was more than an aunt, she was my grandmother and my second mom all rolled into one. I hated to tell her, but she was positive about the whole conversation. She even made me feel comfort just from talking to her. I even asked her to tell our other family members. Looking back now that was a heavy burden for her to carry for me, but at the time I could not do it. I still had to tell my mom and dad. 

Even after I told my mom and dad I thought the hardest part was over. The hardest part was seeing our boys the next day and pretending life was still normal.I realize now that first day I was in shock. Shock is a good thing; it means you are numb. The problem is when that shock wears off and you are hit with the raw pain. Then my mind tormented me. I would dwell on all of the things I was going to miss. I remember sitting in the back yard the next day. It was our normal routine, but the gravity of our new reality kicked in. Jason took a picture of me and Brody and it hit me. He was creating memories to show the boys in the future of mama. That’s when I realized I wasn’t prepared. I was living in denial that this wasn’t really. BUT this was our new reality.

Remember the appointment I had already made with the original neurologist I wanted to see, back in April. I had made that appointment back in May, it was in my last post. Well, I remember that appointment a few weeks after leaving Pulley’s office and began to pray this doctor would have a different opinion. I convinced myself that Dr. Pulley was just ALS driven and he made a rushed decision. Now, this is partly because we never actually wanted to go see him. We were adamant that we wanted to go to Mayo. Also when he actually diagnosed me he hesitated for a moment like it could be something different. Then he refused to tell us what he thought it might have been. So I was holding out hope. I would pray, cry, and beg God every night to let it be anything that would give me more time with my children and Jason. I wasn’t asking for a miracle, though it would be nice, I just wanted more time. I know I’m pulling on your heart strings, but this blog is about raw honest truth. I was in this phase every night for a few weeks. Then every night turned into every other night. Eventually, I could pray at night without crying and it was not always about ALS. This took about a month.

Which leads to July 22: A lot happens in July.

One person I had yet to tell was my principal. I know you are thinking what is the big deal I was scared to death. I  loved being a teacher and that was very important to me. I didn’t want to lose that. My principal was amazing. She made it possible for me to stay at work and in the classroom as long as possible. I probably stayed too long, but that was all on me. Leaving was one of the hardest things I have done. I loved being a teacher. I had a true passion for it. I was very angry that it was being taken from me. My kids were wonderful though they helped me so much. I had two goals and I made one of them. My biggest goal was to finish out the year. Then by November I realized that wasn’t going to happen. I wanted to make it to Christmas. I knew I was pushing it, but I was determined. I even went back in January for our planning days. I ended up leaving early because I was so tired. I just couldn’t do it anymore.

Okay I got off track a little. Back to July 22.

Dr. Pulley’s office called to schedule me for my first ALS clinic. It was to be on July 18th the same day as my appointment in Savannah with the neurologist I wanted to see originally back in April. By this time Jason and I both had resentment and anger towards Pulley. Granted I know now it was not his fault. He didn’t “give me” ALS, but at the same time in our minds he did in a way. I just could never walk back in that building, too much negativity. So we never returned to that building and never saw him again. I’m sure he is a great doctor but I believe God was leading me somewhere else. 

In the meantime I waited on July 18th to get here to get a second. While I waited I took control of my own ALS journey. Since apparently no one else was going to get me into Mayo, I was going to do it myself. This is actually a funny story. Maybe I’m being too honest, but if I made you cry now you might laugh. I know we all do it but if you have kids the quietest place in your house is in your bathroom on your toilet. Laugh if you must. But that is where I was on my phone Googling how to get a referral to Mayo. It isn’t hard at all. You can actually do it yourself, on your phone, while on the potty. I filled out the referral request, submitted it and scheduled the phone interview the following week all while on my porcelain throne. Call it doing paperwork! Lol I don’t care who you are, that is puny. Okay, I’m done.

I did go get that second option. I was left with a little hope. The doctor told me he was pretty sure, just from a physical exam, I had ALS or PLS. Now, the good news was PLS gives you a much longer time line like 20 plus years. I was like heck yeah I will take that! It gave me hope. I leaned on that very hard. That doctor didn’t order any test because I told him I was going to Mayo. He believed that Mayo was the best place for me. He wished me luck and he wanted me to let him know what I found out.

I ended up getting an appointment with Mayo in August about a month and a half after I requested an appointment. I didn’t think that was too bad for the best medical facility there is. By the time I got to Mayo I had pretty much accepted my fate. I just needed them to tell me. I will do a more detailed blog on Mayo later. When I meet with Dr. Shaw he was very nice. Treated me with kid gloves, what I had really needed the first time I was diagnosed. I told him about got UF health and all that. He asked me a lot of questions before he even started the physical exam. He was not in a rush and gave me all the time in the world. By this time I just wanted an answer from the medical professionals I trusted. After he did the physical assessment he sat in front of me and I could tell it pained him to tell me I did in fact have ALS. I accept it. I just shook my head like I know it’s okay.

My mom went with me to that appointment. Jason was waiting at the hotel with Dane. He was 8 months old at the time. He just couldn’t hear a doctor say it again yet. He had not recovered from our experience and he still had hope. I dreaded having to wreck Jason’s hope. Unlike me he still couldn’t accept it. He was shattered when I told him. Mayo was his last hope.

The appointment had been on a Wednesday and I took the rest of the week off to process everything. Then I moved on. I wasn’t going to waste what time I had being sad, mad, or in denial. I was going to live my best life and do what I enjoyed while I could. I had spent from June the 24th to August the 18th in many different stages of denial, hope, and ever other emotion I was done. Now that doesn’t mean every day was good. I still have my moments, but I don’t let them last long. No point in dwelling over something I can’t change. I want to focus on the positive. Life is too short for sadness, anger, and drama.

~ He has a plan and I have a purpose ~

• ALS with Anna