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Dear McDougall

Noticed I didn’t use the word “doctor” because I reserve that title for those in the field who practice legitimately. You are a quack of the worse kind: self-serving. At first I thought you were just perhaps slightly brain-damaged from the stroke you suffered at an early age or perhaps you have had some recent undiagnosed damage. Sadly, that isn’t the case. You are just a quack.

The first couple of days I struggled with your absolutely false information forced upon us. You stated that within ten years of diagnosed all MS patients would either be disabled or dead. And that current MS meds were useless. I’m not sure why you would state that because sitting in your audience were three MS patients who were at the 10 year mark or more and yet only one of them used a cane and had never used the disease modifying drugs. Who knew what a difference d-m-d would have had on her. But you were absolutely certain you could cure MS with diet. I find ¬†your statements completely insane and misleading. You are a quack.

For 10 days I listened to your non-sense. For 10 days I plotted my escape. I tried to show enough respect to not detract for those kind people present who wanted desperately to feel better. For their sake I sat on my hands and said nothing. I am ashamed of myself, but I believed I wasn’t there to disrupt the hope of others. They are truly sick people who want something more for themselves and they paid (way too much) to hear your garbage. So I sat quietly. But make no mistake about it: I do not agree with you. You are a quack.

As you maligned the entire field of doctors as being owned by the pharmaceutical companies (and many of my dear friends are doctors) I winced and remained silent. You are entitled to your opinion. You claimed some of the doctors have even taken to pushing supplement lines on their patients. You discredit all the greedy doctors who try to convince unsuspecting patients of the merits of pills they don’t need. You are so much better than them. You would never profit from someone else’s poor health. Well, except for the diet books and food products you market. Yeah, I didn’t forget about that. But you are going to cure the world with your food (order form attached).

Here’s the bottom line: you should count your lucky stars I made it into the control group because I promise you I would have quit the study on Monday if I had to spend one year of my life eating your diet for your sake. I have no faith in anything you state as fact when I know you are a liar for something as well known as the disease progression in MS. Anyone can google it and find out that you erroneously state facts to support you own greed: sell books, sell products. You would have wasted nearly $20k on me.

My opinion is that OHSU should not be conducting any studies for you or lending any credibility to you. You are a quack. I plan on letting Dr. Bourdette and his MS clinic know that I am very disappointed they allowed MS patients anywhere near you. This definitely shines a dim light on them and they should sever all ties with you or risk their own reputation. You are a quack.

So you got 10 days of my life and I learned a valuable lesson about greedy, ignorant professionals. From the bottom of my heart I ask that you stop infecting innocent patients with your garbage. If you can’t just preach to the value of a vegan diet (and leave it at that) then please retire and stop practicing this type of medicine. Closing down your “health and medical center” should be simple: just turn in the hotel key card at the front desk. (Yes, I thought that was a joke as well. Nice job trying to put lipstick on a pig.)

 
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Posted by on March 31, 2011 in Uncategorized

 

Twas the night before McDougall’s

I think I’m all packed up and ready to go. Now to get a good night’s sleep…yeah, right!

Since early this morning (or perhaps late last night) I’ve been reconsidering this decision to leave my family for ten days. I know ten days doesn’t seem like eternity to most folks, but I don’t think I can go that long without hugs from my husband, from Beebee or Maxaroni. (I got my good bye hug from Abbsey tonight at my birthday dinner celebration. It was wonderful!) How will I know if this is the right or wrong choice? After I set foot in Santa Rosa and cry buckets of tears? (It doesn’t help matters that just now I started my period. Ugh! No wonder I’ve been an emotional mess the past few days.)

I know I can suck it up and do the right thing: complete the entire study. Plus I realize there is good, helpful (although slightly skewed) information to be had. And what stay at home mom wouldn’t like a ten day vacation from her life? And adventure? Sort of. Relaxing? Well, not so much, but I won’t be cooking, cleaning, or taking care of anyone except for myself. That’s a good vacation even without meat, dairy and olive oil.

Another way to look at it is that this is the EXTREME LENTEN JOURNEY. Talk about denying myself all the pleasures in my life: my family, good food, good drink, luxuries like Direct TV and a vehicle at my disposal and all my dear friends to hang with over spring break. Additionally, I’m denying myself my 43rd birthday celebration. Yes, this is my 40 days in the desert except it is ten days and the desert is a resort in Santa Rosa, California. But the food won’t be much better. And the drink…can’t forget the drink.

So, to recap: anxious about tomorrow, going to miss my family like crazy, and sucking it up for the good of medical science (and the need to take a 10 day break from reality). Yep, that about sums it up. Gotta get some shut eye before the mad dash to the airport begins. Wish me luck!

 
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Posted by on March 18, 2011 in Uncategorized

 

The McDougall Diet 10 Day program here I come

Perhaps you were wondering why I am ditching my wonderful husband and kids for 10 days in Santa Rosa…well, it is part of a MS & Diet Study I have participated in for the past year. I was in the control group so I was to maintain my typical diet. But now that my year is up I can go to Santa Rosa and learn the McDougall vegan diet and choose to make it part of my life or not.

I’ll let you know if I decide this way of eating is right for me and my family. It is a healthy but restrictive diet so I’m not sure if I’ll adopt it entirely or not. It certainly has me thinking about my food choices and how they impact my health.

 

Here is a link to a video about the 10 Day program:

http://www.drmcdougall.com/health_10_day_program_video.html

 
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Posted by on March 14, 2011 in Uncategorized

 

Today was the final visit to the OHSU MS Clinic for the Diet & MS study I am participating in. Ahhhh, glorious day! Except it won’t be my final visit because the lab techs poked me four times and couldn’t get a decent blood sample. Tomorrow morning I shall give them another shot. Hopefully my veins produce more blood in the morning.

Tonight I am trying out a few diet recipes on my family. They will enjoy Pasta e fagioli soup, garlic bread, and carrot cake. I just want to see their reaction so I’ll know if this way of eating will agree with all of us.

I’ve got to head back to OHSU tonight to do my final MRI for the study. I’m a little concerned that there isn’t a decent vein left for the contrast dye. I will try to remain positive.

I’m so thankful the year long study has ended and I stuck with it. I’m hopeful that the trip to Santa Rosa, California will be enjoyable. I heard that five or six other study participants will be joining me at the 10 day live in clinic. In addition the study coordinator will be joining us during the last few days. It is nice to know a few people are on the same journey as I am.

 
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Posted by on March 14, 2011 in Uncategorized

 

Before the diagnosis

Maxaroni and Mom at the school Halloween Carnival. This is when I first presented with Multiple Sclerosis symptoms.

This is me Halloween 2004 with Maxaroni in a Baby Bjorn. I used to wear that little guy all the time. One of Beebee’s preschool friends remarked that I always had that baby on. Well, it was easier then. But this photo reminds me of that time when I still tried to honor my mommy duties even though I was scared out of my mind as to what was wrong with my feet. Just a little more than a month after this photo was taken I was told I had MS.

 
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Posted by on March 13, 2011 in Uncategorized

 

Busy, Busy, oops…life come to a standstill

You know how they say God sends you little messages if you remain still enough to hear them? Yeah, well, God got tired of me ignoring his messages. I mean, I wasn’t ignoring them so much as I was way toooooo busy to receive them. So God took a stronger approach: he sent me a blessing in disguise called Multiple Sclerosis.

Now I know what you are thinking: how is MS a blessing? Well, when you are a “stay at home mom” who rarely stayed home because she overcommitted to EVERYTHING then receiving the diagnosis of MS stopped me in my tracks.

Allow me to paint the picture:
I had three beautiful children (Abbsy was 8th grade, Beebee was preschool and Maxaroni was a newborn) and a loving devoted husband Mr.E. We were your typical family who ate dinner together every night (although I hear that is less and less typical) went to church every Sunday (or Saturday night since we are Catholics), and supported each other in our pursuits. Abbsey was involved in a lot of stuff (swim team, football team, track team, choosing her Catholic high school, youth ministry) and I was right there supporting her all the while wrangling the two little ones. In fact, the month I presented with my first symptoms I had just taken over coaching the grade school swim team. Yes, my plate was full. And then my feet went numb.

At first I ignored the symptoms and chalked it up to a flare up of my sciatic problem from adult tap class years prior. But after more than a week with no relief my husband asked me to call our advice nurse line for our insurance. (Note to self: never do this on a Friday night.)

The kind nurse on the other end of the phone line listened to me describe my numb feet and then she got real serious with me. She said I needed to be seen the next day. (Clearly she has never had to make an appointment on a weekend.) What was so urgent I asked. You could have MS she responded. I think I stopped breathing. Possibly my heart stopped, too. The air was sucked out of the room. Huh? What?

So at this point you might be asking yourself what MS is or did I even know…the answer is no. I had no idea. At first I thought it was the Jerry Lewis stuff…you know…the Labor Day weekend telethon. But that made no sense since they are not known as Jerry’s Adults but Jerry’s Kids. Hmm….to Google we went with flying fingers.

Here’s the thing about the internet: it can provide you with a lot of useful information, but it could also be your worst enemy since there is no kind-hearted friend there to distill it for you. Go ahead and google MS. I dare you. It isn’t the best news you’ll ever hear, but there are also other issues like Guillian-Barre syndrome that will stop you in your tracks. Yeah, so glad that isn’t my fate!

So here I sat, glued to the tube, trying to figure out what I was going to do and what the heck was wrong with my feet and how would I drive Abbsey to all her stuff and get Beebee to her playdates and how would I care for Maxaroni or for this enormous house of ours and my head was swirling.

I went in the next day for bloodwork and to rule out nice things like a vitamin B deficiency or thyroid issues, etc. Then when that didn’t answer anything I went in on Monday and was signed up for more testing. Another note to self: never agree to any testing called Nerve Conduction Testing. That is a torture device used to extract information from enemies. OUCH! And it told us nothing. I’d like to think it was just to amuse the physicians.

Finally on Tuesday I noticed the numbness was creeping up my legs. Now I tried not to panic. (You have to realize that every morning since Friday night’s nurses call I worried that I might wake up and no longer be able to use my limbs. I was afraid to fall asleep because it may be the last time I would be able to hold my baby or hug my daughters. I was a mess. My husband was equally worried and spent hours reading up on it.) So by Tuesday I had had enough of dilly dallying around. I needed answers quickly. I went to my doctor’s office and asked to be referred to a neurologist. He was wonderful and had me hooked up with an MRI and neuro exam the very next day.

The neurologist, Dr. JJ, looked at my MRI and saw a spot on my cervical spine. He sent me for another MRI of my brain (with and without contrast) to see if more spots show up. (Last note to self: Never, EVER, agree to having them access a vein in your foot because all your arm/hand veins are used up. That mother hurts like you wouldn’t believe.) Sure enough, seven spots on the old noggin. So Dr. JJ sent me off for a spinal tap, which is less painful than you think. However, if you do not remain flat on back for a good 24 hours you may develop the mother of all headaches called, aptly enough, a spinal headache for which you go back to the hospital for a blood patch. I won’t go into the details, but it instantly cured the headache. (Why didn’t I stay flat on back? Because Busy Mom that I am wanted to attend my daughter’s football banquet that night. If you have a daughter who played on a boys football team as a guard/tackle her 8th grade year AND they won every game including championships then you better believe I am obnoxious enough to have a spinal tap and go to the banquet. Yep, I’m that mom.)

The spinal tap was conclusive: I have MS. I could finally exhale. I was going to be fine. I read the comforting words: Most people diagnosed with MS die WITH the disease and not BECAUSE of MS.

I did a bunch of reading, attended countless lectures, dinners, and MS related events. I was a student of MS. Sometimes I felt over-saturated and had to pull back, but I never gave up my quest for what will keep me disability-free the longest. Four months after my diagnosis I was in a lecture hall at St. Vincent’s Hospital listening to Dr. C talk about MS.

He was so experienced having worked with MS patients over 30 years and as head of Georgetown neurology. He helped bring Avonex, a disease-modifying drug, to the market. He knows MS in and out. I knew I needed him in my life. Mr. E agreed this was the doc for me.

After some persistence and my blunt showing up at his clinic asking for an appointment (and also getting to meet him) I had an appointment within a week. I have never regretted my decision to make Dr. C the caretaker of my MS. I never have to worry because he is on top of things. Between his constant care, my trusty weekly injection of Avonex, and the love and support of Mr. E, I have a life that is truly blessed.

Abbsey is now in college, Beebee is a fourth grader, and Maxaroni is in first grade. Mr. E and I share a love that will never diminish and we gladly travel side by side through all that God puts before us. I’ve tried to say “no” to volunteer work that drains my energy so I will have more energy for myself and my family. I lean on my friends and my faith to support me and my family. We’ve downsized our home from the 3900 sq ft of abundance to a manageable 2800 sq ft ranch rambler. I’ve learned to identify the signs of a relapse coming on which hasn’t happened in more than two years. That has required me to slow down and be still more often. I’m adjusting.

Join me on the journey.

 
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Posted by on March 13, 2011 in Uncategorized

 

Hello world!

I decided to start blogging about my life to keep myself sane. No, really! I’m a wreck of a human being most days. I try to keep on top of my chores: raising kids, making lunches, shopping, cooking, volunteering, and sometimes I even clean house! This journey I am on I hope ends with me closer to God and having left a piece of my heart with the people I encounter along the way. God blessed me with a loving husband, 3 beautiful children, treasured extended family and countless friends. Life is so very good.

I have MS which should be a foot note in my life, but sometimes it takes the headline. Most days I can go about life without giving it much thought. (I know I am blessed to be able to say that since so many people with MS have had a MUCH harder time. They are always in my prayers.) Hopefully one day there will be a cure for MS.

 
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Posted by on March 13, 2011 in Uncategorized