Taking Charge of My Health

 

When I remember how I felt this time last year I can say that I have come a long way. I have gotten off a lot of medication, which has helped me lose over 45 pounds. Last October I came to the hard realization I was over medicating myself and on the wrong medication. After consulting with my doctors we decided to take me off Lyrica and try Gabapentin instead. A month later I lost 20 lbs! This motivated me to lose   more weight so I evaluated my diet and acknowledged that I wasn’t getting enough exercise.

 

Over the last 2 years at the Guthy-Jackson Patient Day for neuromyelitis optica I listened to Elizabeth Yarnell’s talk on nutrition and if certain foods were contributing to our poor health. I finally decided to call her and see what she had to offer since losing weight was important for me and for my family. The first step was a parasite cleanse that lasted 20 days. It was very simple and easy to do. Next, Elizabeth had me draw blood to determine what foods made me more inflamed. Then we tested my urine for 24 hours to see how I digested food. After a week waiting for the results Elizabeth called me for a 2 hour phone conversation explaining my results and a plan.

I couldn’t believe what I learned! I was eating so many wrong foods that were making me more inflamed. For 2 weeks I was on a strict diet and could hardly eat anything. That was tough. But after that we started introducing certain foods again. I’m 4 months into the program and I’ve lost another 25 lbs. Elizabeth has totally opened my eyes about what I should be eating. All of my family and friends keep telling me that they can’t believe how healthy I look. They say I am glowing, they can’t believe how much weight I have lost and that I don’t have that bloated look anymore.

 

I am also working a personal trainer at the gym 2-3 times a week and I do Pilates twice a week. I am 23 lbs away from my goal weight, which was where I was before I was pregnant with Allen. My goal is to lose the last 23 pounds by June 25. My ultimate goal is get back down to my college weight in the next year or so. Between Elizabeth and my personal trainer I think I can do this.

 

Erin wins her disability support case

There’s been a lot of conversation lately from several patients who have been seeking support, guidance and prayers as they apply for Disability Support. We know every state has different rules and laws governing who qualifies and we’re by no means experts but what we can do is sympathize with those patients who are struggling to be approved. The reality is, every case of NMO is different, which is why some patients are able to work, others like Christine and I (Jenna) have been able to modify our work environments or work for ourselves, and others like Erin, have a more difficult time with their symptoms and aren’t able to work at all. Erin recently won her case for Disability Support so I asked her a few questions about her experience:

1. Why did you make the decision to apply for Disability Support?
When my family sold the hotel we ran in Frisco the new owners were unable to accommodate my needs. I tried to find other work but with the number of doctor appointments Neuromyelitis Optica (NMO) patients have and days when our symptoms become a challenge I couldn’t find employment.

2. Why was it denied?
I’m not sure. I applied in May 2011 and in February 2012 I received a letter that it was denied.

3. After it was denied what were your options as a next step?
Our only option was to find a great disability lawyer, which we found in March 2012.

4. I imagine you were quite disappointed with the decision for it to be denied. What did you do to manage your stress and NMO symptoms?
I was very stressed! I just had Allen so like any Mom will tell you, that’s an adjustment on its own. My NMO symptoms had also come back with a vengeance after my pregnancy so I was spending a lot of time with my doctors to manage medications that would control my pain.

5. What was the appeal process and how long did it take?
It took me over 2 years from start to finish. I attended an appeals hearing in November where I submitted over 700 pages of documentation to the judge. Over an hour, the judge and occupational expert asked a lot of tough questions, which was very nerve racking! After the hearing the judge requested more documentation and would make a decision in 60 days. I was finally approved the end of January this year.

6. Obviously filing for Disability Support and filing an appeal are costly burdens on you and your family. How did it impact you financially?
Colorado has it written in their laws that should one win their disability support case then any outstanding amounts (ie. Legal expenses) are taken immediately from the back pay. That meant for my family the only out of pocket expenses we had was when my lawyer requested medical records I had to get from my doctors or the hospital.

7. I’m glad to hear you rightfully won your appeal. Tell our readers how that felt after it was all done.
It’s a huge relief off my shoulders. Now I don’t feel that our family will solely rely on just Eric’s income alone anymore. Unfortunately, there is also a part of me that is quite sad that I’m not able to work. I love what I used to do, which was working in the restaurant and hotel business since I was fifteen. I even went to college for culinary arts and food service management. It’s one chapter of my life I’ve now had to close although I’m very grateful my disability support was approved and I no longer have to worry about how I am going to work while managing this disease.

Share your NMO Experience

I have this overwhelming urge to apologize to you all for our infrequent posts but Erin, Christine and I are doing exactly what we encourage on this blog – to live life to the fullest despite having NMO (Neuromyelitis Optica).

Erin’s son Allen is a toddler now who is full of energy and eager to melt your heart. Recently Erin planned his first birthday party with a guest list of over 60 people! Post pregnancy, Erin has struggled with her NMO symptoms and tried her first round of PLEX (aka plasma exchange) with some success. You might catch her on the various NMO support groups on Facebook.

 

 

 

 

 

 

 

With her win of MasterChef, Christine is (reluctantly) our new poster woman for NMO. After her win, she’s been touring all across the US to be on various talk shows and recently travelled to Vietnam to be on their production of MasterChef. Look for her cookbook to be released May 14th.

Buy her new cookbook here!

 

 

 

 

 

While I’m still enjoying my maternity leave with Sophie (in Canada we get 1 year), I have also returned to school online to complete my marketing degree, am focusing on my health by way of obsessing over working out and am in talks for a special project that I’m unable to speak about right now. As a new family we recently travelled to Mexico and Whistler, BC.

 

 

 

 

Since we are out exploring our great world (and we’ll continue sharing those experiences) we thought it might be great to put a call out to other NMO patients to join us. We’re looking for guest bloggers to share an experience on NMO Diaries. You can write a blog, do a video diary or be interviewed by us. So share your MS walk, running a marathon, recovering from an attack or any other experience that excites you. Email your interest to nmodiaries@gmail.com.

Christine skiing

After all her hardwork, check out Christine skiing like a pro!  Remember, this is her first time skiing in a long time and she was brave enough to learn with a visual impairment due to NMO (Neuromyelitis Optica).  Note her stylin’ safety vest!

For Christine’s thoughts on her day, check out her blog, The Blind Cook.

 

YouTube Preview Image
04
Mar 2011
POSTED BY Jenna
DISCUSSION 1 Comment

Keystone Day 2

The footage that was taken was on day 2 at Keystone of us skiing; it probably was not a smart choice we went 2 days in a row because our NMO (Neuromyelitis Optica) was definitely acting up. This was the first time I used my Flip camera, please bare with me with my video recording skills.

 

YouTube Preview Image
04
Mar 2011
POSTED BY Erin
DISCUSSION 1 Comment

Traumatic experience

Poor Jenna almost had a traumatic experience when John and her decided to do a run together. I sat down at the bottom of the mountain with Christine – we were just talking and hanging out waiting for everyone to return.  When Jenna returned and started telling the story, I was thinking take out the camera and start recording her traumatic experience. This is going to be great for the website!  You can’t even tell she has NMO (Neuromyelitis Optica)!

 

YouTube Preview Image
04
Mar 2011
POSTED BY Erin
DISCUSSION No Comments

Colorado Ski Reunion

Every year we try to head out to Whistler, British Columbia because we love the mountains and the ski village mentality but this year we jumped at the chance to visit Erin and Eric in Frisco, Colorado at the same time that Christine and John, who flew in from Houston, Texas. We were all a little surprised that our first reunion since meeting at the Guthy-Jackson Patient Day in November would happen so soon but Erin, Christine and I have become a close team of warriors battling our disease, NMO (Neuromyelitis Optica) together.

This was the first time that Erin and I attempted to take up an old hobby since our diagnosis. I was terrified of the pain and you’ll see my first run was really like the first time again but truth be told, I was more scared of breaking a promise I made to myself a long time ago. Christine took up skiing for the very first time – now that’s courage!

I’m so blessed to have shared this experience with such an amazing support network. You’ll hear us laugh a lot (especially Erin) through our pain, our bad jokes about my butt pads, and John who was so hard core on the mountain he actually ripped the crotch right out of his board pants!

Note: Sorry about some of the bad video footage. I’m still learning how to use my Flip Camera.

YouTube Preview Image
27
Feb 2011
POSTED BY Jenna
DISCUSSION 6 Comments