Wednesday, May 12, 2010
New at Blogging, so be patient:)
I guess I should start out by introducing myself. I have no idea if anybody will even read this, but I figure it will be a good outlet for me, and if something I post on this blog helps just one person, I will feel like it was worth the effort. My name is Toby Bushman. I am 26 years old and have been married for over 7 years. I have four children, ages 6, 4, 2, and 1 and stay at home with them. When people ask me, "Do you work?" I respond, "Yes, I work my butt off. I'm a stay at home mom." :) I recently graduated with my associate’s degree from Utah Valley University and am transferring to BYU next semester to pursue a Bachelors in Psychology and a Masters in Social Work, all through distance education while my kids are sleeping. It's a lot of work, but it's something I'm passionate about and determined to complete. My husband, Jake, is an air traffic controller for the SLC airport.
I was diagnosed with Multiple Sclerosis on November 4, 2004. Two of my aunts have MS, so when the left side of my body went numb, and I was having neck pain and dizzy spells, I knew I needed to have some MRIs. I have 4 lesions on my brain and 2 on my spine.
MS is a difficult disease to have for many reasons. It is difficult to explain to people how MS affects me. So when I am going through a relapse of symptoms, like I am now, it is very lonely. Seems like nobody understands what it's like to appear normal, and yet struggle silently with overwhelming fatigue, dizziness, weakness, and pain. It is very scary to not know what the future holds for me. My biggest fear is becoming a nuisance to my family...having my husband and children have to feed me or, worse, change my diapers. The thought terrifies me. If I can just make it on my own until my children graduate high school, I will be extremely thankful.
But, for the first time since my diagnosis, I feel hope. The knew research about CCSVI (Chronic cerebro-spinal venous insufficiency) makes so much sense to me, and now it's just a matter of figuring out how to get tested and treated! I first heard about CCSVI when my aunt (who has MS) emailed me this link: http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5
I cried tears of joy that day at the thought of living a life free of this disease. I have tried to be tested here in Utah, and have had some progress, but not much. I tried to get into Stanford, but they are currently not taking patients and waiting for approval for a clinical trial. I've applied to be a part of the trial in Buffalo, NY but even if I do get a call for that, it does not include treatment, just imaging. So, I've decided to pursue going to Poland to have Dr. Simke and Dr. Ludyga treat me. Currently, the wait is until 2012, but I'm hoping they might be able to at least get me in for imaging while I'm in Germany visiting my in laws this December. If you're interested in the Poland route for CCSVI, the place that is doing the Liberation Treatment is called Euromedic, and their official website is http://www.euromedicpoland.com/. The information to register is on this site. If you call the main phone number, it's difficult to find someone who speaks English, but I got a hold of a woman named Marta who is the manager there and she spoke good English. You can reach her at 011 48 692 015 969. You're welcome to email me at firstname.lastname@example.org if you have any questions or advice for me.
I have never been on any of the traditional treatments for MS, mostly because I've been having babies since I was diagnosed:) But now that I am finished bearing children, I've begun taking LDN (Low Dose Naltrexone), and it has helped me tremendously. Before starting LDN, I was ALWAYS numb somewhere, and now, I am very rarely numb anywhere. Until the past 2 weeks, I have not relapsed in well over a year, and it has been wonderful. If you decide to try LDN, I highly recommend getting it from Skips Pharmacy in Boca Raton, FL. They send it to me every 3 months and Dr. Skip is a pioneer in compounding and researching the drug as it relates to MS. Ok, well I think that's enough for now. I'll be in touch.