My MS/HSCT Journey

     Today is the day I am taking my life back. I want to use today to fix my mistakes. I realized that for the last 10 years I have drank to excess almost every night and wasted all my free time that I could have used for self improvement on getting drunk and numbing my emotions.      Today I make the choice to stop smoking. This is the first big change. I also want to quit drinking, eat healthier, learn more about nutrition, exercise daily, get to a healthy weight, and get healthier mentally.       By doing these things I feel like despite my disease it will help me get some semblance of control back into my life. It will also comfort me and by having that comfort it will help mentally. 

     Today I was diagnosed with Multiple Sclerosis. It is both unbelievable and also made total sense. I guess I have and wanted to dismiss MS as a possibility. I felt that because my uncle had MS, that I wouldn't because it is rare. Only 400,000 people in the United States have MS and only 20,000 people are diagnosed each year so it seemed more likely that it was something else.      Quite honestly, the idea of having MS scared the living daylights out of me. I remember being 8 or 9 years old and going to meet my uncle for the first time. He lived close to 300 miles away from me and it was a 5-hour trip north to see him. I remember my grandmother coaching me and preparing me along the way. When I saw him for the first time the gravity and severity of his disability hit me. I was worried for him and sad that he was unable to move. He died in 1998 shortly after he suffered a 2nd stroke due to complications of multiple sclerosis. Those memories of that visit ...

Today was my Lumbar Puncture and I didn't sleep at all. I was too anxious and nervous. Once we got to the hospital I was shaking because I was terrified. While Kurt and I were waiting I joked about just sneaking out but I wasn't kidding. I have to admit, when they called me back for the lumbar puncture I was holding back tears. In fact, there was a moment when I was seriously ready to bolt. Thank God Kurt was with me or I am sure I would have ran. It was difficult walking with the nurse. Call me a whimp but never in my whole life have I ever wanted my grandmother so so much.  The nurses were so nice. They told my husband he had to wait in the room next to mine while they put the needle in. It was separated by glass so he could see me. Because of the way I was lying, I couldn't see him so I just kept telling myself, reassuring myself that he was right there, I was in the hospital if anything went wrong, and that everything was going to be okay. The nurses told me to lay on m...

Today I met with a neurologist. I have never met a neurosurgeon or a neurologist until all this started. The neurologist did some strange tests. He asked me to push and pull his hands, tested my strength, looked at my eyes which blinded me, and held this vibrating fork against different parts of my legs and arms. The neurologist told me it's definitely not a tumor or cancer and that they really do think it's a demyelinating disease. They are leaning towards MS but want me to do a lumbar puncture to be absolutely certain. The neurosurgeon came in and told me what a lumbar puncture was and how they performed them. She asked if I wanted to lay down and she could visually show me what they were going to do. She told me that sometimes you can get a bad headache after and to just drink lots of water and lay flat. I told her that I didn't need her to show me, I understood. Kurt and I were kind of thrown. We didn't know what to say, what to ask, or really anything. I won't ...

Today has been so hard. I can't help but feel terrified and think of the worst-case scenario. What if it's a brain tumor? What if they have to do brain surgery? Just imagining preparing for something like that scares me to death. I just can't do it. I'll die. I have been trying not to think about it or research it because I start to shake or I start to cry. I never thought this would happen to me.  I keep thinking of how much I want my mom, my sister, and most of all my grandmother. I feel like I have to be strong because I feel so alone. My family, the ones who I trust to give me logical advice in situations like this, are all dead. I guess the shock wore off and that's why I am scared. I just feel so betrayed, hurt, and overwhelmed. I just want to cry and even though I am terrified of what is wrong, I need to know what I need to do to fix it. I will do or try anything. God, just give me a chance to fix this. I went to our garage for privacy and let mysel...

Today was pretty stressful. I was terrified on the way to the neurology office. We waited for them to call us back. When they did, we sat down and waited for the doctor.  She came in, asked how I was doing, and told us that the mass was a lesion. She had said they thought I might have had a demyelinating disease, possibly multiple sclerosis but because the MRI I had done in Yreka isn't clear, they can't give me a definitive answer. She asked me if I had seen a neurologist which I hadn't. She wants me to see a neurologist and to have a more advanced MRI done at Oregon Advanced Imaging. I clarified that it wasn’t a tumor or cancer and she repeated that they wouldn’t know for sure until they had a clear image. So, I need to do another MRI and then a neurologist can tell me for sure what is wrong. So, now I am waiting for a call to schedule my MRI so I can finally figure out what is going on. My right leg is still weak and feels like I am dragging it around like an anchor. ...

    So, I went to Starbucks and to McDonald's to get breakfast for my family. When I came home, I wanted a cigarette so I sat down and as I was smoking, I felt a sudden tightness going up my leg and arm. In a matter of seconds, it got super intense, my arm folded inward and my leg extended outwards but I had no control over either my leg or my arm. I realized I was tensing up trying to fight it but It wasn't helping so I gave in and relaxed. Slowly the tightness eased and my arm and leg started to relax. My husband, witnessing the whole thing was worried and kept asking if I was okay. I told him that something wasn't right and that I wanted to go to the hospital.     When we got to the Emergency room, they hooked me to all the machines, drew blood, gave me an IV, and tested my heart. When those all came back normal, they tested me for a stroke. When I cleared that, they did an MRI with and without contrast.      Finally, the doctor came in w...