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.

Patient Day 2016

Guthy Jackson NMO Patient day is always a special day for me. It’s the one-day a year I get to connect with my NMO family. This year marked my 5th time attending this special day, this year I brought my mom. I wanted her to meet my NMO family and some of the doctors that I have talked with. Every year at Patient day Ms. Jackson does a fabulous job putting on this event for patients. It is such a great opportunity for patients to connect with each other and talk to some of the top NMO doctors. It is so nice to talk to another person that has NMO and talk about what you are feeling and they completely understand. This event is so special Ms. Jackson has doctors all over the world to come talk to us patients about whatever questions we might have. Also patients get to find out what’s happening new in the medical world of NMO.

The big topic this year was researchers talking to us patients about trying medical trials for new drugs for NMO. It was very interesting and there were some good points made about this topic. If you are interested to learn more about the clinical trials please visit the Guthy Jackson website there are some great resources there. The also had several breakout sessions this year from asking the Docs, nutrition, mediation, navigating insurance, managing pain and simplifying the science of NMO. It is a day where you can learn as much as you can about having NMO or being a caregiver for a NMO patient.

The other big thing is donating the blood to the Circles program that hopefully helps a cure for NMO. I strongly encourage you to do this if you are a NMO patient and your family. We all have a piece in this very large puzzle and we need to work together to help find the cure.

When the conference is all over with the patients gather around and have dinner and just talk to each other and have a good time. We are all like one big family and we really enjoy spending time with each other and like I said this is a one-day thing we get to bond like this. Its hard to say goodbye at the end of the night to each other. But we know in 364 more days we will be reunited together again.

http://guthyjacksonfoundation.org

IMG_0831 IMG_0836 IMG_0843 IMG_0841 IMG_0840 IMG_0839 IMG_0838 IMG_0844 IMG_0848 IMG_0846 IMG_0850 IMG_1199

Happy 4th Birthday Allen

image image image image image

 

Allen just celebrated his 4th birthday and I can’t be how blessed I am. When I was first diagnosed with NMO in 2009. It was a huge question if I would be able to have kids. After having three bad attacks it was hard to see having child. After meeting with two NMO doctors we got the green light to have Kids. When we started the IVF process in 2011 I knew it was going to be a journey to have a baby. When Allen was born in 2012 I couldn’t believe I did it! Despite having a very terrifying disease and all I went through I got to a very healthy baby boy.

Allen was such a good baby always happy and just had the most adorable grin. When he turned one year old I could believe how fast it went by. As a first time mom it’s hard sometimes to enjoy every moment, because you don’t really understand how fast it goes by. Allen loved cars since he was a baby but when turned one it was different game. He wanted to drive them, wash them and park them. When he turned two my mom got him a Mickey car he could sit on and push with his feet. To this day he still plays with that car. That’s his favorite car to play within side the house. He loves to go outside and drive his power wheels around the back of the house. He recently gave Alana a ride in his mustang and she was smiling ear to ear. Alana just adores her big brother Allen teacher her about cars and how to drag race. He is in heaven right now drag racing has started and he love to watch John Force. He can’t wait till the drag strip opens up for the summer. Luckily it’s 10 mins from our house. We spend a lot of time up there in the summer. I am pretty sure Allen would sleep up all summer if I let him. He is super excited cause only one more year then he is allowed to do Jr. Dragster. I am hoping I will do ok letting him race. Thankfully I am into cars and love the drag strip too.

Allen had his 4th birthday party at Jumpstreet and had a ball! That’s were he wanted to have it and he wanted the theme to be Jurassic park. He helped me pick out all the decorations to how he wanted his cake. This was the first year he made the decision where he wanted it and what the theme would be. For a week before his birthday he was telling everyone it was his birthday! Like every kid he was sad his birthday came to an end.

01
Mar 2016
POSTED BY Erin
POSTED IN

Uncategorized

DISCUSSION 2 Comments

Elf on the shelf

When Allen was a baby people were telling me about this Elf doll that comes the 1st of December and watches their children every day till Christmas Eve to see if they are being naughty or nice. Then at night he flies back to the North Pole and gives Santa the report on their child. I just could not believe what I was hearing about all the rules and to what great lengths these moms have gone to make the elf do certain things. I kept thinking in the back of my head. This seems like a lot of work? But every mom told me it so much fun and to see the look on their child’s face when they woke up in the morning looking for the elf to see what the elf go into that night.

Forward to this last Christmas I broke down and bought an Elf on shelf. A Couple of weeks before December 1st I started looking on Pinterst, The web, and Blog sites for ideas of what to make this elf do cute things every morning for Allen to see and get interested finding him every morning. Finding a way for him to arrive was the easiest part. Buddy that’s his name that Allen gave him arrived in a box with a letter from Santa telling Allen why he was here to visit him and all the rules about not touching him. For the first few weeks Buddy was with us I had it covered what to do with him every day. The one thing I had to do is wait till Allen went to sleep that night and then go set up Buddy. I did not want to do it in the morning since I never know really what time Allen would wake up. Like I said for the first few weeks I was great with ideas for Buddy but after that I would sometimes struggle with ideas for him. As I would look for ideas on the web I couldn’t help but think do some Moms have a special container for all the props for their elf? I could not believe some of the stuff they had their elf doing and how much time it would take to set it up. I am sure when Allen gets older I will have to be more creative but this year I think I did a pretty good job for my first year. Allen was very happy with his elf, he was very sad when he left with Santa for the year. I told Allen he should be back next year if he continues to be a good boy. Now the next question is do I get Alana her own elf the girl version? Then I tell myself that’s just more work and more ideas I will have to come up with. We will see I have a few more years to decide.

IMG_9379 IMG_9470 IMG_9522 IMG_9526 IMG_9552 IMG_9543 IMG_9536 IMG_9531 IMG_9589 IMG_9587 IMG_9576 IMG_9570 IMG_9280 IMG_9278 IMG_9276 IMG_9269 FullSizeRender

03
Feb 2016
POSTED BY Erin
DISCUSSION No Comments

Surviving the Holidays with NMO

As we all can agree with from Thanksgiving all the way to New Years is just chaos for a lot of people. I just survived my first year hosting for twenty people at my house. While trying to manage my NMO, having a terrible cold and two sick kids. For people who have never cooked a Thanksgiving dinner may not realize what a production it takes. It takes me a couple of weeks to organize and make a menu. Then a few days to go shopping and pick up everything then a few days of cooking. Then a few days after Thanksgiving to clean it all up and put everything back. While trying to get all this done I try to rest whenever I can even if that means sitting on a tall bar stool to cook. Try to nap when the kids are napping and breaking up my shopping trips into a few days rather go all day running around to all the stores. This year I had two very helpful helpers my mother and Mother in law. They helped me cook, clean or watch the kids. That was so very helpful.

Next during the busy holiday season is my birthday, which is not so stressful on me I get to enjoy being with my family and spending time with them. Eric treated me to a hotel in downtown Denver to watch the parade of lights. It was so nice and enjoyable for all of us especially the kids I didn’t have to worry about if they were getting cold. Now that Christmas is going to be here before I know it. I am buying a lot of my gifts online this year so I don’t have to load and unload kids and bags from the car. Plus how can you argue with buying most of your gifts online while sitting on the sofa with your pajamas on. I just can’t deal with crowds like I use to before NMO and shopping all day. I simply can’t do it. It wears me down so fast then I am in too much pain to deal with Christmas stuff. I want to enjoy Christmas especially with Allen getting older he has been so much fun this year with Christmas. This will be Alana’s first Christmas and that’s always a fun one too. We also decided not to run around to a bunch of houses this year during Christmas. We all can agree its hard living life with NMO then you add all the holiday things that need to get done this time of the year. It can be very hard and can wear you out very quickly. I just try to pace myself the best I can and do a little bit every day so I am not pushing my self too much.

 

Happy Holidays!

The Miller Family

 

IMG_9429

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.

Happy Birthday Allen

Happy 3rd Birthday Allen! I can’t believe three years have gone by already. I feel so blessed that I am his mother. Every year around his birthday I can’t help myself to reflect on the journey Eric and I went on to have him. I remember when I was first diagnosed I just cried cause we didn’t know for sure if I could have kids and if I would pass NMO on to them. After seeing some pretty incredible doctors they assured me I could get pregnant and there was a very small chance I could pass NMO onto my children. I am just so happy and blessed Allen is a healthy boy!

 

Allen is quite the character and really building up his personality. I have really seen him grow up this last year. I love how much he can talk now and the stuff he comes up with can always make Eric and I get a good laugh. He is 100% boy; He loves his cars, tractors and trains. His favorite thing to do is tell me he is a racecar and makes racing noises as he runs through the house. Allen is almost 100% potty trained we have been working with him for a month now and he is getting pretty darn good at it. Allen also got a new room and bunk beds this last month. He was pretty excited since I decorated his room in cars for him. He now calls his old room the baby’s room. Allen kind of knows there is a baby coming soon. If you ask him where the baby is he points to my tummy. I know he will be a great big Brother!

 

Erin’s pregnancy update

I wanted to give everyone an update on how my pregnancy is going. The last 3 months have been challenging I have been really sick with a bad sinus infection, ear infection and bronchitis. I have been seeing up to 3 doctors a week trying to get me better but between being pregnant and having NMO I just can’t win. I am now on my fifth round of antibiotics and three different inhalers I am hoping this will do the trick. Eric has even been blessed with me not having a voice for over a week now. Other then that baby girl Miller is doing well she is over three pounds and is always moving around in my tummy. I am currently 32 weeks which is almost 7 ½ months and I have been really blessed and I have not been having any issues with my NMO I am still getting my CD 19 count checked every month by my neurologist. I got the green light this month to try to breast feed this time as long as a do some pulse steroids, I am very excited about this since with Allen I could not since I did Rituxan three hours after having him. I am hoping this time with breastfeeding I will not flare at all after having her.

These last 2 months are going to busy around here we will be moving Allen out of his room and into what use to be our office. He is joining the big kids club and getting bunk beds, He wants his room to be decorated in cars and planes. I am trying to complete this project in the next few weeks so he can get adjusted to being in a new room. I also need to start decorating Allen’s old room for baby girl and getting everything ready for her. This last weekend we went through our storage unit and pulled out all the baby stuff and the bassinett. I am defiantly in nesting mode and trying to get everything ready cause I know she will be here before I know it. I am trying not to drive Eric crazy with all the things that need to get done cause I feel like we are under the gun and I just want to have as much done as possible before she is born. As we all know your life is pretty hectic after having a baby not to mention having a three old adjust to having a baby sister now.

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.