I'm sad that everyone doesn't have the same results as I did.
This week I responded to a person who had stem cell treatment at the same clinic I went to. Unfortunately this person did not have good results and now feels like I am somewhat of a "bad person" for sharing my personal story. I don't share and answer questions to hurt or mislead anyone, so I thought I would share my response to those who think I am a fraud:
"I understand that you may not be in a good place. If I hadn't experienced favorable results, I think it would be reasonable to have extreme feelings of animosity and hostility.
If you really followed me and knew the candid dialogue that I have with so many different people every day, you would know that I have never misrepresented my story. I have shared my joys as well as my struggles. I shared with the world about my recent MS exacerbation that sent me back to an extremely dark place, but then how I had the strength to keep fighting and work to recover.
I am just one person - not paid by anyone or partnered with anyone for some agenda. In October 2008 I posted on MSWorld.org that I would share my experience - good and bad - and that's what I continue to do.
My website was not out of design, but only done to help alleviate the overwhelming amount of time it was taking to personally answer so many questions I was getting by Feb 2009. I am not good at daily blogging and I have been honest about that in many posts and emails. I'm not getting a dime to share and I paid for my website myself. When I returned home in Nov 2008, I was blessed to start feeling benefits. By early 2009, I could see and drive and think clearly again, but I still had many things to deal with and continue to address in my daily life as a result of aggressively fighting the adverse effects that MS had taken on my life in just 4 years. My website is not up to date, buy my Facebook is. My YouTube videos tell the whole story and are easy to find for anyone looking and doing their homework.
I had to file bankruptcy and I worry monthly about keeping my home. I know what it’s like to spend every last dime on medical expenses and worry about how I’m going to pay my utility bills monthly. I pay very close attention to my health overall including eating right, limiting stress, exercising, and living the healthiest lifestyle I possible can.
I have never played the "pity card" or tried to be a martyr. I am a positive person by nature and use that outlook and personality trait to keep going.
I have NEVER presented stem cell treatment as a cure and NEVER tell anyone that they should do it just because I did well. What I do tell people everyday is to learn as much as you can, be a self advocate in your own healthcare, and understand that MS is so very different for each individual.
I didn't know if the treatment would work, but I had exhausted all of my options here in the US. It was worth the minimal risk and comparative cost to what I had been paying per year for disease modifying drugs and I knew that I didn't want to sit at home as my MS continued to progress and wait the many years it will take for a comparable stem cell treatment here in the US.
It's not the right choice for everyone and many don't have the financial resources, but thankfully people and researchers and scientists worldwide continue to do the work that will make it an option here someday.
It's extremely hard to be somewhat of a pioneer in emerging medical fields like stem cell treatments. By some of us making the choice to try something new, we are the pioneers.
I have never lied or skewed the truth. I have never purposly ignored or not responded to anyone before making the decision to go or after returning home. I’m just one person and sometimes it’s not immediate, but I do my best to respond, just as I’m doing to you now.
I’ve always told everyone to keep in touch after they got home. Many do not and I understand why. It takes so much time and energy and many people have so much going on ... good and bad.
You are free to call me directly or email me anytime to voice more concerns and have an open discussion about what we went through.
A 13 mile bike ride on my new 3 speed beach cruiser!
We had sold my bicycle just the season before. I had lost the strength to ride even a few blocks and my balance was hit and miss. I was slowly surrendering to my limitations.
When we returned home from my stem cell treatment, it was soon evident that I was regaining strength, balance, and stamina. Santa was nice enough to give me another beach cruiser, and this one had a basket and all all the bells and whistles =)
First I rode 4 blocks to the market to buy a weekly lotto ticket. Then it was on to 8 blocks to the beach. After that, I rode the entire length of the Mission Bay boardwalk. Soon I was able to ride with the boys all around Mission Bay - a 13 mile ride from our house and back. It's not always easy. The boys are faster sometimes and the last 6 blocks are uphill towards our house, but none the less, I CAN DO IT! Life is good, the ocean breeze is refreshing on the face, and iLoveMyNewStemCells for sure now.
March 25, 2009
Meet my dad.
My dad was so thrilled with my astonishing improvement since I had my stem cell treatment for Multiple Sclerosis. He was inspired to ask about stem cell treatment for his Type II Diabetes. His motivation to become more proactive in his own healthcare led him to fill out the application. Now we are heading back down to Cost Rica for his treatment in May. Hooray, another trip back to Costa Rica. He's a good Dad. He's going to let me share his experience with you all too.
March 24, 2009
Doctor's Gag Orders - Great commentary on NPR
Talk of the Nation - You can find Web reviews of just about anything these days, and some sites are making it easy to find and broadcast and opinions and complaints about doctors — offering no recourse if a doctor is unfairly maligned. Some physicians are asking patients to sign a legal document waiving their right to post an unauthorized online review. Dr. Jeffrey Segal, CEO and founder of Medical Justice, talks about leading the organization that is behind the waiver.
I know you don't want to talk to me right now and I can't say I blame you.I'm sure it was quite a shock, finding me camped on your doorstep that day, with my luggage packed.And I know you didn't "exactly" invite me in, but here I am.
I'm certain you're probably wondering how I got your address in the first place, aren't you?Everybody always asks me that stupid question.It was easy really.I looked you up in a statistical manual, calculated your genetics and environment, crunched some numbers about your childhood illnesses, relatives illnesses, and basic habits, and I located you.It wasn't hard at all.I chose you because I could.
Now, I'm not saying we have to be friends here.Frankly, I'd be a bit surprised if we got along very well at all.You and I are very different in many ways.For instance, I thrive on surprises, whereas you prefer to always know what lies ahead.I enjoy a big dose of sardonic humor… you prefer a kinder, more mellow approach.I see nothing wrong with pain and suffering… you try to avoid it.A good time for me is kicking ass and taking no names… you prefer a reasonable fight.
Here's the part that's probably really going to piss you off, so I might as well just get it out of the way.To date, no one, and I mean no one, has ever been able to evict me once I decide to move in.Oh sure, some people try to slow me down by scaring me with needles and the like, but I don't leave.I get quiet and reflective sometimes, but I'll never leave you totally.That you can count on, my friend.
So here's how this is going to work with me, like it or not.I'm here and I'm not leaving so we might as well try our best to co-exist.You do some things for me, and I'll occasionally scratch your back (and anywhere I else I choose to itch you, just for the record).I'll give you some good days and if I like you, maybe even a few good months or years.I'll teach you some important life lessons about not taking things for granted, which you'll thank me for later.I'll encourage you to get out of bed and live today to the fullest and to enjoy whatever morsel of goodness the Universe is throwing on your plate.I'll teach you how to appreciate the simple things in life and how not to sweat the small stuff.I'm definitely gonna make you laugh sometimes, even if you don't want to.Likewise, I'm gonna make you cry sometimes because you need to.You WILL learn to respect me or I'll kill you trying.
If you think about it from my point of view, I'm not asking for much in return really.I just want to have a good time messing you up.A few laughs when I surprise you with being unable to walk or see.A little chuckle for me when you accidentally wet yourself because I've messed with your bladder.Maybe even a full, belly laugh when I make you ride around in one of those electric chairs or something.It's all in good fun.And again, if I like you, I may not make it a permanent event.
So what do you say, roomie?We got a deal?Personally I think you're getting the better end of the stick out of this arrangement, but that's just my perspective.
Take your time thinking over your answer.I've got your whole life to await your response.
A top congressional Republican on Sunday criticized President Barack Obama's expected decision to reverse the Bush administration's limits on embryonic stem-cell research, calling it a distraction from the country's economic slump.
March 4, 2009
MS Awareness Week
Progress on MS can’t wait. Move it… and move us closer to a world free of MS during MS Awareness Week, March 2-8.
Every hour someone is diagnosed with MS, a chronic disease of the central nervous system for which there is no cure. Multiple sclerosis interrupts the flow of information between the brain and the body and stops people from moving. Many have trouble imagining what their lives would be without the ability to move, but I know the effects of MS; I have experienced the devastation first hand.
MS Awareness Week takes place March 2-8. I encourage people to join the movement to end MS and help people with MS move their lives forward.
It’s easy to get involved. It only takes a few minutes to make a difference in the lives of the millions of people worldwide who live with this disease.
Some simple things you can do: • Visit nationalMSsociety.org to learn more about MS. • Tell 10 people that MS Awareness Week is March 2-8 and ask them to tell 10 people they know. • Sponsor a walker or cyclist in a Walk MS or Bike MS event, or participate yourself!
Progress on MS can’t wait. Move It during MS Awareness Week and move us closer to a world free of MS.
February 28, 2009
I have done more research than most read or understand
Here is some more clarification for all of you who are interested and may still be misinformed.
I had stem cell treatment done outside the United States. Forget about politics and FDA approvals and US trials. Just try to wrap your head around the factual information.
I had 8 intrathecal injections of adult stem cells extracted from donated umbilical cord blood and 2 IV infusions of stem cells extracted from my own fat tissue.
My own stem cells that were extracted from my fat tissue are autologous stem cells, just like bone marrow stem cells are. Autologous stem cells refer to stem cells that are collected from an individual and given back to that same individual.
My stem cells that came from my own fat tissue are mesenchymal stem cells. Stem cells that come from bone marrow are hematopoietic stem cells.
Mesenchymal stem cells have immune regulatory properties. It is thought that through their regulatory effect of the immune system, they may help stop the immune attack on the myelin sheath. Mesenchymal cells also may potentially help remyelination of the affected neurons.
Currently the University of Cambridge is conducting formal clinical studies using mesenchymal stem cells for treatment of MS.
Unlike autologous hematopoietic stem cells, mesenchymal stem cells have an innate immune-modulating effect that suppresses autoimmunity without using a chemotherapy preparative regimen.
Northwestern University and Cambridge University and other U.S. institutes do recognize that a less toxic stem cell therapy is probable and makes “real scientific sense”.
There is scientific data! I did months and months of research, much more than I would ever be able to share here on a blog.
In my humble opinion, the FDA isn’t always the most efficient government agency. Politics DO have an influence. Money DOES have an influence. Their actions (or lack thereof) aren’t always just based on factual scientific information. There are other influences that play a part.
I had non-FDA approved stem cell treatment done outside of the United States because I wasn’t willing to put my health on hold until the FDA decided that the scientific research done on our own soil has the possibility of helping me stay mobile and healthy. It sure was less of a risk that taking Tysabri for 2 years with it’s black label warning, “increases your chance of getting a rare brain infection that usually causes death or severe disability.” My copay with Blue Cross PPO insurance for Tysabri was $1450 a month.
Do you think Biogen Idec really wants me to benefit from stem cell therapy?
February 8, 2009
A long awaited update ...
I apologize for not updating you all on my progress sooner. It has been somewhat of a whirlwind since the beginning of the year. I have been getting phone calls and responding to emails daily asking about my stem cell treatment experience.
I have continued to experience good results since having the stem cell treatment in Costa Rica last November. My balance is excellent and I continue to see well out of my right eye. The best is that I still have not had a bladder or bowel "incident" since coming home! The fatigue is noticeably less and my stamina continues to increase. Cognitive function is clearer, some days clearer than others. Numbness continues to lessen.
As of tomorrow I will have been off my MS medication, Tysabri, for 17 weeks. I wasn't sure if I was going to continue the medication when I got home, but so far, so good.
I call my boyfriend Sergeant Raj. He set up a regiment for me to follow to help the stem cells keep working (per his conversation with the doctors at ICM). He bought me some weights and some stretch bands and a new beach cruiser. Basically I am doing somewhat of the same physical therapy routine I was doing there. I didn't have a choice, the drill sergeant made me, but I am glad he did
The physical therapy is simple and not too overwhelming. I spend about 40 minutes in the morning using light weights (2 lb.) with my arms and legs. I stretch and I also use "chip clips" and "hair clips" to strengthen my fingers. I also either ride my bicycle or swim everyday as well. It seems like a lot, but I'm not giving this a chance not to work. I can tell that the daily exercise and movement really does help.
Because I am back working, sitting at my computer, reading, writing, and being on the phone again, I am noticing changes. I type better because of the increased sensation in my fingers. I'm reading better because I can see better. Before I left for Costa Rica, I was having trouble working at all. Couldn't concentrate, frustrated with the difficulty in typing, and was having trouble seeing out of my right eye.
Because I was feeling so much better than before I had the treatment, I did try to "push the envelope" and had to step back and reassess. If I sit too long, I notice the tingling and cold feeling coming back into my hands and feet. That was the same sensation I had before being diagnosed. The first few times it happened, it really stressed me out. But after readjusting my behavior, I realized that it wasn't permanent and that I can't go back to my old habits and work environment of before I was DX with MS just because I am feeling better. The stem cell treatment wasn't a miracle. It is a medical treatment and I need to keep remembering that I need to help my body help itself. Sounds so cliché, but it's the fact and science of how the cells work.
I am happy so far with my progress. I am still doing the "alternative" stuff I was doing before I left, like acupuncture, massage therapy, yoga, and diet. I was drinking a Chai Tea Latte mix during the holidays that was warm and sugar sweet, but I had to stop. My fingers would tingle and feel more numb the days I drank the Chai, so again I paid attention to my body and stopped, and felt better immediately.
I finally am feeling comfortable enough to increase my liquid intake. I am up to about 32 oz. of water a day. I know I NEED at least 64 oz., but I will get there. I had stopped drinking water all together before the stem cell treatment because I did not want to have bladder incontinence. I am educated and do know that just because I didn’t drink water, it didn’t mean that I still wouldn’t have incontinence. It was just a subconscious act of not wanting to deal with the bladder urgency and incontinence. The more people I talk to, the more I realize that so many of us have the same feelings, same behaviors, and same symptoms. I didn’t think I would ever feel comfortable taking about the bladder and bowl problems that sometime come with MS. The topic used to make me cry
Now I have had the opportunity to talk to other patients who have had treatment at ICM Costa Rica for MS, Diabetes, Spinal Cord Injury, and Autism. I have also spoke with patients who have been to Europe, Russia, Israel, China, and Mexico for stem cell treatments. I have been told more good thing than bad, and trust me, I had looked for the bad before I decided to try this because I didn’t want to make a mistake because of being blinded by false promises of miraculous cures. I am fortunate that I was not at such a desperate place yet because of immobility or total loss of function so that I did not just take internet stories of wellness and success with stem cell therapy as fact. I did the research, listened to classes at Stanford and other Universities about stem cells, called medical specialists ad researchers. I am lucky that I had the resources available, the clarity to still understand what I was learning, and the desire to not give in. I’m glad I made the decision to give the stem cell treatment a try.
That’s all of my update for today. Sorry it's so long and sorry it's been a while.