When I'm feeling under the weather my body just doesn't know what to do. I imagine 50 million little SpongeBobs, or the Three Stooges in operation central trying to run the show only end up pressing all the wrong buttons and spilling milk in the 'no spill' zone.
I can never be certain if I am getting sick or having a flare up anyway. I'm allergic to pretty much all pills ever, so it's not like I can pop in some penicillin and be fine. Which means I have to go to my doctor and say "I'm not sure if I'm sick or if it's MS." He's wonderful. He doesn't say "How can you not tell the difference?" like most people do. He just knows me. There was a period when EVERYTHING was blamed on the MS tho. Sometimes it's easy to do that. It's a crutch. Oh, your face hurts, it's the MS. Oh, you're going into anaphalaxis, it's the MS. Oh, you have a migraine? It's the MS. Even great doctors can be shitty sometimes. So I put my foot down, demanding I be checked out for other things, and please stop seeing me as MS Sonja. I'm Sonja, with MS.
First thing I did when I was diagnosed with MS was I signed up for the annual MS 5K walk. I don't do 5K's. Ever. I was still partially numb, but dammit, I was going to walk while I still could! I posted about it, raised about $500 or so, and my husband and daughter (7 at the time) came along. I did it again the next year, and the next year, raising money and walking in the 5K. Rain or shine, I'm there. This has reminded me that there are things that are much bigger than I having a major impact on their lives. I remember sobbing while I tried to hold a brush, and my daughter asking me "Mom, I want you to brush my hair. I want you to do your best. I don't care if it hurts, I want you to do it. I love you" She was 7. She understood that little ritual of hair brushing meant the world to me, and that I (while completely numb then) was still important and capable. She's pretty cool eh?
So today I have a weird headache and my face cannot decide if it wants to be numb or not. I prefer not of course. I'm also SUPER sleepy. And my legs feel like they are wrapped in plastic. What's different tho is that my throat hurts. Anyone ever been happy over a sore throat? I'm telling you this, I could scream for joy off the top of Pikes Peak about it! That means that I'm under the weather. So I can go to the doctor and say "I'm sick. I know this. Isn't that AWESOME!" It's like finding out you're pregnant- you wait for the test to give you a positive or negative result... Well, I just got a little plus sign and I am thrilled that I know what it is!
This surgery I am so desperately trying to raise funds for will have an impact on every portion of my life. If you recall I talked about that cognitive fog, extreme fatigue, the numbness, and so forth? The theory is this- people with MS have build up in their veins. A vein in their chest, and 2 jugular veins. All people with MS reportedly do. All is a lot if you think about it. Some non-MS people also have this build up. When they do, they go to the doctor, get a venogram, get angioplasty, bill their insurance, and life is good. When you have MS, you go to the doctor, they say "that's experimental" you're left to suffer and silently scream, and pray. However, the clinical trials started popping up. Mostly overseas. Then FINALLY the FDA approved ONE site in the states. It's in Dayton, Ohio. It's where I am trying to go.
I spoke with the doctor for an hour yesterday about the procedure, the success rate, the process, the risks, the benefits, the cost, all of it. Let me tell you I cannot get there fast enough! 70% of his patients have seen significant improvement, and the other 30% had (at a minimum) at least some improvement. So 100% of his patients improved. HOLY SHIT THAT'S AWESOME!
Here is what he said the patients had improve- cognitive fog, numbness, tingling, severe fatigue, urination frequency (yes I have that thank you), constipation (yes I have that too thank you), unexplained pain in the neck (I've been trying to get mine diagnosed for almost a year), headaches, fine motor, balance, and so on. WHO DOES THIS SOUND LIKE TO YOU!?!?!?!?!
That is why I want this surgery so badly! I can regain all my Sonja bits! I can stay awake! I can feel things! I can be the word-smithing Sonja! I could feel like I have to go to the bathroom and actually have to go! I could feel my FACE!!! I can brush my daughters hair, I can work, I can hold a pencil, I can know when I'm sick, I can leave the pain meds in the dust, I can be me again! That is why this is so important. If I don't get the surgery the likelihood that I have a stroke is greatly increased. If I get the surgery, I will feel, think, awake, and do more than a 5K to give back. I am a licensed counselor, I have a much needed skill, I can give to those with MS suffering from depression, I can make it to birthday parties, I can do anything! In 10 years it will probably be available for the population. 10 years. In 10 years I will be 48. In 10 years a lot can happen. I pray that the universe will take care of me and make this happen. I am a tigress, I am a fighter, I am funny, and smart, and I have MS. I need my face. That's who.
Click here to donate to Sonja's surgery fees
