The Holiday Season is Here!

As I am gearing up for the next few weeks it’s going to be very busy time. First I would like to wish everyone a Happy Thanksgiving! We are traveling to Kansas to see my husband’s family this year for 4 days. This time of the year just seems like chaos for everyone till after New Year’s. As NMO patients this can be challenging for us trying to keep up with everything and trying to take of ourselves. I know for me this time of year is very exhausting and for that I need to thank Starbucks since I will be visiting them everyday till after New Year’s.  Once we get back from Kansas I will be decorating the house for Christmas. I am one of those weird people that put up four Christmas trees because I love Christmas trees! Also it’s that time of the year for Elf on the Shelf to appear and this year we are having another elf joining our elf Buddy I love doing elf on the shelf even though I stress about it too much some times. The look on Allen’s face is just worth it every morning when he is looking for Buddy. The following weekend we are staying downtown for one night and will be watching the Christmas lights parade. Then it will be my 35th birthday which I am absolutely dreading to me that means I am 5 years closer to being 40. I think I will have a hard time with that one well I know I will. I recently watched that movie “This is 40.” Yes I will be like her and will be celebrating my 38th birthday for several years. Four days after my birthday I will be doing my Rituxan which we all know that’s a party in its self. Which means I will not be feeling well for a couple weeks. The next thing on my schedule is my husband’s company Christmas party. Which means Eric and I will be wrapping about twenty gifts for the Christmas party gift raffle. Also squeezing in wrapping all the gifts for the kids and family members. I am hoping I will have time to do Christmas cookies with the kids. Started this tradition with Allen ever since he was a baby. Alana was not into it last year but I think this year she will be more into it. Well at least eating the frosting out of the bowl when I am not looking. Then before I know it will be Christmas. We are staying home this year for Christmas so the kids can enjoy playing with their toys.

Even though it will be a hectic time of the year, I am very thankful for the many blessing in my life such as my family. I think we all can to relate to that when it’s the holiday time we forget what matters the most sometimes.

 

 

8 years living with NMO

June 23rd marks my 8th year being diagnosed with NMO. It’s a bitter sweet day to reflect on as I remember how much my life changed within a week. I remember so clearly; I was working at my family’s hotel in Frisco and I was riding the elevator down to the lobby when all of a sudden I couldn’t control my left arm. I walked into my husband’s office since he was the general manager. He looked at me and asked what the heck is wrong with me and to stop waving my arm around. I said something is not right and I need to get to the hospital. Within hours I was diagnosed with Transverse Myelitis, which they thought would likely be my only attack. They suggested that I should be fine after my 5 days of steroids in the hospital.

Almost 1 month later I had another attack where this time my whole body started shaking uncontrollably and I started to go paralyzed on my left side. This time we drove down to Denver and I was admitted to the hospital for 5 days again for IV steroids. They did another MRI and they changed my diagnoses to relapsing remitting MS. I didn’t know what to think when they told me I had MS but I focused on finding a neurologist to start MS medication right away. What a whirl wind experience I had to find a doctor and to start educating myself about MS and all the different medications I had to take. At one point I was taking 15 different pills, which did not include my MS medication that I had to inject into myself everyday.

In August again 1 month after my second attack I started to go blind in my left eye and the doctors did not understand why I was having such horrible attacks since I was on MS medication. My neurologist was second guessing I had MS so I was admitted again to the hospital for 5 days of IV steroids. My doctor recommended I go to the Mayo Clinic and get a second opinion as he thought I had Neuromyelitis Optica. When my doctor told me that I might have NMO he looked at Eric and I and said I would have a better chance winning of the powerball then being diagnosed with NMO. Well within a month I went to the Mayo Clinic and the doctor there agreed I had NMO. Now my life was going to change even more they originally told me. I needed to start taking Rituxan right away and the doctors could not guarantee I would get my vision back in my left eye.

Looking back all I went through and how much my life changed after being diagnosed with NMO it’s been bitter sweet. At one point through my journey I thought I would never be able to have kids and I would never see out of my left eye and I would never recover being paralyzed on my left side. I beat all those things; I have two adorable children, my left eye I can see out of, and for my left side it’s just more weaker then my right. I am very thankful I have seen some wonderful doctors that helped my dream of having kids come true. I have also met some incredible people because of having NMO and I wouldn’t have met them if it wasn’t for NMO.

Rituxan vs. Breastfeeding

I wanted to talk about the difference between when I had Allen compared to when I had Alana. I have had a very different experience with my NMO with each kid after I gave birth. After I had Allen I had to make sure I did Rituxan within 8 hours after childbirth. So needless to say I did not get much time with him after he was delivered. I had to go to a completely different floor to get my Rituxan since it’s a chemotherapy drug I had to be moved to the cancer floor. It took over 12 hours for them to infuse the Rituxan the nurse ran it very slow since I just gave birth. That was very hard for me as being a first time mom being away from my son for over 12 hours. By doing the Rituxan so quickly after childbirth my doctors were hoping it would help really decrease my chance having a relapse. After the first infusion I would have to do another round of Rituxan 2 weeks later at my doctors office. About week after my second round of Rituxan my NMO symptoms came back very badly. I started back on my daily symptom pills and was hoping for the best. About 9 months later I had a relapse ended up in the hospital to do PLEX. Within a month I had another Relapse ended back in the hospital for another round of PLEX. I was good for about 4 months when another relapse occurred and was admitted to the hospital again for another round of PLEX. After having Allen I really battle with my NMO even though I did my Rituxan very quickly it didn’t seem like it worked very well.

 

When I decided to have another baby this time I really wanted not to do Rituxan right after childbirth and try to breastfeed. Hoping that would maybe help prevent having a relapse. I had Alana 3 months ago and I am doing fairly well! Breastfeeding has been a challenge but I am hanging in there! My NMO symptoms are mild right now about a week ago they started coming back. The one symptom I am battling is horrible headaches, I went in for a nerve block and I hope it will work. I will honestly say I feel so much better breastfeeding vs doing Rituxan. My doctor is giving me till September to breastfeed then I will have to do Rituxan. I am hoping I will make it that long! I am being closely monitored by the doctors to make sure I do not flare. I go in every couple weeks to get my blood work checked, to make sure my levels are absolute. My whole family can’t believe so far how well I am doing with my NMO since having Alana. I am truly hoping this time I stay relapse free for awhile.

Update on Erin

Hi NMO patients and supporters,

I received a surprise call from Erin last night so I thought to update everyone on how she’s doing. It was a surprise because we haven’t spoken much. Ok – AT ALL. Erin and I used to speak several times a week and email almost daily but now that we have kids I’m happy to report that we’re just too busy.

Unfortunately, Erin’s had a rough go of her NMO (Neuromyelitis Optica) symptoms recently. She just returned home from her third round of PLEX and I could just hear in her voice the happiness to get out of the hospital and back to her beautiful son, Allen. Her MRI scans aren’t showing any new lesions so her doctors are having to rely on her word that she’s suffering in extreme pain. Although Erin receives regular Rituxan sessions, it just wasn’t enough to keep the symptoms at bay. Now her doctors wonder if she’ll need a daily dose of immune suppression like Cellcept or Imuran.

Besides the NMO, Erin has now become anemic and will require iron infusions via intravenous. This week will be quite trying as she’ll receive IV work for both her iron infusion and Rituxan.

Of course, we all understand how frustrating NMO can be. We get tired of telling others we aren’t feeling good and sometimes don’t even have the strength to say so. We get angry at our ever changing bodies. (Erin is fed up with the weight gain and inability to do anything about it. She’s tried juicing, Pilates and cardio workouts but when you’re in pain, you’re in pain.) So I was relieved to hear that Erin plans to speak to someone about her experience. She’s blessed to have a great support network. Her husband, Eric, is a God send and her extended family help her with her son, Allen. However, it’s just as important to work on our mental health so receiving perception from an outside party is not only ideal, it’s a necessity.

Mid May Erin plans to fly out and see Dr. Greenberg. She has a great team of doctors in the Denver area but like we all should be, Erin is an advocate for her own health so she’s chosen to receive an additional point of view and have Dr. Greenberg provide her with a check up.

Erin is providing almost daily updates on the Facebook groups and I know she’s grateful for all the support and kind words through her current challenges.

Mi Vida Loca

Well, well, well. It’s been a while, dear readers. This third season of “MasterChef” is more than half over, and I’m proud to say I’m still in the game. As of last night, top 6, baby!

I’ve become the fan favorite of this season, and if you would’ve told me this while I was filming the show, I would’ve rolled my eyes and said, “Get outta here!” I don’t know why, but I found it hard to imagine my life becoming a topic of public interest. I guess when you’ve lived 30+ years of your life in obscure anonymity, fame is hard to fathom. But here it is, thanks to a little summer primetime competitive cooking show and Gordon Ramsay.

It’s weird to even say I get fan mail. But I appreciate all of it so much. It’s wonderful to know that I’ve inspired thousands of people all over the world; it makes all the stress I underwent while cooking my arse off on the show all worth it.

But the important question here is how is my health? And how have I managed to keep my NMO under control? That’s a mystery to me. With the level of stress and fatigue I’d endured at “MasterChef” and even the roller coaster I’ve been on since the show’s started airing, I’m quite surprised my NMO has remained quiet. I still make time to get to the lab and have the routine blood work done. And a few weeks ago, I made a trip up to Dallas to visit with my neurologist. Everything has been checking out a-okay, and I really need to thank my lucky stars that my health hasn’t been compromised after having undergone what was undoubtedly one of the most crazy experiences of my life.

Amidst the press and thesis, I should be going in for another routine round of Rituxan in the upcoming weeks. Even though my CD-19 count has been 0, my neuro and I decided I should go ahead and flush out my B-cells before life gets too crazy and chemo time becomes hard to schedule. Is it a bit ironic (masochistic?) that I’m sort of looking forward to the Rituxan appointments? Jennifer the nurse pushes liquid Benadryl straight into my veins, and I have an excuse to take a slumber from the writing, the press, the social networks, the phone calls, the emails, the requests…

It’s been a very positive experience for the most part. But all change—even good change—is stressful. And all of we NMOers seem to be innate stress-balls. Here’s to good health and good fortune. Oh, and excuses to take a respite.

Thanks, everyone, for watching “MasterChef” and supporting #teamchristine: Mondays and Tuesdays on FOX at 9/8 CT. Visit my Facebook fan page and hit the “like” button, and follow me on Twitter. Much love to the NMO community.

18
Jul 2012
POSTED BY Christine
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