I'll admit that in the beginning when I realized the severity of my condition I did get emotional. When the drug high finally cleared I made the decision that this disease wouldn't defeat me. Instead of NMO being who I am, it will only be a part of me. I remember a therapist asking me in early days who I was. I thought it was an easy assignment except when I started listing my attributes he pointed out that they were just things I did, not elements of my being.
I remember speaking with a Mom who has NMO. I asked her how she managed being a parent with our condition and she said, "you know what? Having kids is a good thing. They don't give me a chance to think about how much it hurts." I feel that way about work, my hobbies, my social life.
So, I guess the reverse is also true.
This week I spent more than my usual share speaking with other NMO patients, reading the support group posts and educating others. I love being able to be there for others however focusing on NMO highlighted how it affects me. Suddenly I had trouble sleeping, my legs felt like lead and the fatigue kicked in. I also noticed that the support group identified that a lot of patients had increased symptoms after the patient day event in LA. Now, there are obviously a lot of factors to consider but I can't help but wonder if we influence each other more than we identify.
It must be true that it's best with everything in moderation.
Wednesday, November 24, 2010
Sunday, November 21, 2010
Fighting Fatigue
As the Christmas season quickly approaches I've started to worry about several things. My biggest concern is how to manage my exhaustion. With just a full time job I find myself wiped out. This weekend I wanted to clean the house, work out on the elliptical machine, start and maybe finish my Christmas shopping, try baking a new recipe. Instead I found myself completely spent and sleeping most of each day.
For an extrovert with endless goals and aspirations, this is very frustrating.
Looking at our social calendar I feel an overwhelming panic. There are work functions, private holiday drop ins, throw in a couple birthday parties, Christmas concerts and family obligations. Just thinking about them all makes me feel like tapping out. It's not that I don't want to attend - it's quite the opposite - but when you're tired and it shows, people get concerned. I hate making others worry about me. I never want to be one of those who withdraws from public because of an illness but I hate it when others fuss over me.
I'm also very worried about the weather. It's cold here in Canada. Last year I was just recovering from my transverse myelitis attack so with the combination of the numbing pain killers and a spine that hadn't quite recovered its sense of feeling, I was immune to the cold. I've heard that other NMO patients are greatly affected by the weather so naturally this year, I'm quietly concerned.
I have to remember to take it one day at a time. Every morning I take a deep breath in, swing my feet over the bed, exhale, then say, "Please help me accept the things I cannot change and the things I can do my best to put the right foot forward". Then I take my first step of the day.
For an extrovert with endless goals and aspirations, this is very frustrating.
Looking at our social calendar I feel an overwhelming panic. There are work functions, private holiday drop ins, throw in a couple birthday parties, Christmas concerts and family obligations. Just thinking about them all makes me feel like tapping out. It's not that I don't want to attend - it's quite the opposite - but when you're tired and it shows, people get concerned. I hate making others worry about me. I never want to be one of those who withdraws from public because of an illness but I hate it when others fuss over me.
I'm also very worried about the weather. It's cold here in Canada. Last year I was just recovering from my transverse myelitis attack so with the combination of the numbing pain killers and a spine that hadn't quite recovered its sense of feeling, I was immune to the cold. I've heard that other NMO patients are greatly affected by the weather so naturally this year, I'm quietly concerned.
I have to remember to take it one day at a time. Every morning I take a deep breath in, swing my feet over the bed, exhale, then say, "Please help me accept the things I cannot change and the things I can do my best to put the right foot forward". Then I take my first step of the day.
Tuesday, November 16, 2010
Rheumatology Visit
Preventative action is really important especially with NMO where one must try to eliminate attacks. This is done by suppressing your immune system. There are a lot of different drugs to accomplish this including Imuran, Cellcept and Rituxan. We tried Imuran but I think I was allergic to it. I couldn't stop vomiting once we got up to the dose I needed to be on. My neurologist, who we'll call Dr. S., had to bring in a rheumatologist, who we'll call Dr. R. because Dr. S. has no experience with Cellcept. Oddly enough, the Americans all use Rituxan as their first drug of choice, which is actually considered a form of chemotherapy. I asked Dr. S. about Rituxan 2 weeks ago but he tells me that he doesn't have access to this therapy - only oncology does.
Today I sat down with Dr. R. I wanted to know if he thought it was possible for us to one day get pregnant. Although he was thrilled to see that I am doing so much better than I was in the spring (I wore high heels on purpose today), he was hesitant because it hasn't even been a year since my last attack. One of the biggest challenges with a pregnancy and NMO is that most immune suppressant drugs aren't safe for a baby. So, for now, the plan is to re-visit this in January, when it has been a year. In the meantime, we'll need to get checked out to make sure we both have working parts.
Possible options to keep me protected from an attack during a pregnancy:
Today I sat down with Dr. R. I wanted to know if he thought it was possible for us to one day get pregnant. Although he was thrilled to see that I am doing so much better than I was in the spring (I wore high heels on purpose today), he was hesitant because it hasn't even been a year since my last attack. One of the biggest challenges with a pregnancy and NMO is that most immune suppressant drugs aren't safe for a baby. So, for now, the plan is to re-visit this in January, when it has been a year. In the meantime, we'll need to get checked out to make sure we both have working parts.
Possible options to keep me protected from an attack during a pregnancy:
- get off Cellcept then use artificial insemination (or as Erin calls it, the turkey bastor method)
- use prednisone at a low dose during the pregnancy
- possibly use Rituxan before the pregnancy, provided it's safe for the baby (Dr. R. says he needs to do some homework)
- breast feeding is NOT an option because post partum is difficult and we'll need to get back on some sort of immune suppressant
While in LA, the panel of neurologists did say that doctors in France who worked with NMO pregnancies found that symptoms decreased dramatically during the pregnancy but all patients suffered extreme attacks post partum. Risky? Definitely. Frightening? Absolutely. Necessary? Debatable.
On a side note, Dr. R. did ask if we had private insurance for Rituxan. I guess it isn't offered under the universal health system in Canada. Odd. So as George Michaels says, "you gotta have faith," and that's exactly what I plan to do.
Monday, November 15, 2010
Jenna's Story
I used to think I was special, maybe even better than you. Truth is, I was a wide eyed, self declared brat who in her 20's thought she was invincible. I curse myself now that I didn't get a life insurance policy earlier when I was a super hero.
I was travelling through Europe the summer of 2008 with a close friend. I remember the day...the sun was shining, I had just bought a new purse, we were in Venice, Italy. Then my right forearm caught on fire. It felt like a bad sunburn but it wasn't red, it had no rash. I was confused. We ran to the "farmacia" and I lathered an entire bottle of aloe vera on my arm. Nothing helped but I refused to miss gelato and our group so we trekked on. The next day the pain went away and I was once again invincible. An entire year went by and every time I felt stressed out or tired that burn would show up. It moved to a new place on my body each time but would disappear again by the next day so I never saw a doctor. Besides, what would I say? My body is on fire but I see nothing?
Finally in the summer of 2009 I went in for a routine check up. Turns out a lot of women saunter around with bladder infections so I was put on antibiotics. Unfortunately I had a bad allergic reaction but with the standard inflammed ears, swollen throat and vomiting, the horrible burning returned except this time it was my entire body. Once the symptoms from the reaction went away the burning never left. Finally my GP flagged a serious concern. Now, I have to mention that at this point it was 30 degrees celsius outside so no one noticed that I wore very little clothing but the truth is, even the dog brushing his tail by me set me off in a scream similar to a bad slasher flick. Being in Canada and all, I had to cold call myself into a MRI (which I finally found a cancellation for at 3am) or wait 6-9 months for my appointment. Then I had to cold call myself into a neurologist or wait the same amount for one to read the MRI. My American friends always seem so envious of our universal health care system (thank you Michael Moore for painting such a beautiful picture) and up until this moment I was very proud of it too but since I've really had to rely on this system, I'd vote NO with conviction. Anyways, the first neurologist didn't see lesions on my MRI so he flat out said I was crazy. The next neurologist thought it was leftovers from the allergic reaction so finally in a desperate state I found naturopathic solutions. I hate needles but I was that desperate I tried acupuncture and it worked...for the short term.
I love high heels. Yes, even the most expensive heels still hurt but geez, they look fantastic. I have a pair of Cole Haans, leopard print with Nike Air in them. I know, crazy they make those, right? It was September 22, 2009, the same day as my niece's birthday and I always remember the shoes because they later become a goal. I got out of the subway system amongst the crowd and within the 2 blocks walk to my office I had this awful sensation go up both my legs at the same time. It felt identical to your foot falling asleep, except I was walking and I hadn't been sitting before that. Maybe it was cold, maybe these shoes are really bad for me, maybe I shouldn't have gone out to a film festival party for so late the night before. Just as quickly as the feeling happened it passed so I thought nothing of it and carried on to work. It wasn't until mid afternoon that I realized I hadn't moved from my desk all day. I hadn't even felt the need to go pee. When I tried to get up it was as if I had lost control of the bottom half of my body. I should have gone straight to the hospital but I didn't. Truth be told, I hate doctors or rather, I hate people touching me, so I taxied home, ordered a pizza and waited on the couch for my fiance. Another hour went by and I had to admit to him that I probably needed to go pee except I didn't know for sure. He gave me this odd look or the TMI face and when I tried to get up I toppled over. The next 12 hours were a blur in the ER. I had several doctors perform neuro function tests, several MRIs, evoke potential test and even a spinal tap. I was checked into a room with a cranky roommate and they even took my blackberry. It took a week to get out of that hole. The nurses were nice but transverse myelitis sucks. I wanted to play with my dog, go to the movies with my fiance, finish the projects at work. It took almost 2 months of hard work to walk again. If I hadn't been so high on the painkillers I probably would have been really scared. They sent my blood to the Mayo Clinic but it came back negative for NMO.
Months went by then the spasms happened. I called off our destination wedding in Mexico. Spasms are 2 minutes of hell. I've even blacked out from the pain. I gained weight from the steroids but I never noticed because I was so confused. I even lost my job so I lived off of credit until I figured out what was happening.
It was now January 2010. My fiance was called to Haiti to cover the earthquake (he's a journalist). I promised to hold the fort down but the day after he left I suddenly lost vision in my left eye. I wear contacts so I actually thought I damaged the eye because it didn't hurt. Since I had a doctor's appointment on Tuesday I thought to just wait the weekend. When I saw my specialist and told him the symptom he panicked. I didn't know why everyone was making a big deal. No one laughed at my bad jokes. I was rushed to the ER. Our contractor called that he could start renovations on our bathroom earlier than scheduled (tomorrow!) and could he please start. I called our rental property to arrange the change in date. My sister went home to let the dog out since I was apparently spending time in the ER. I still didn't get what the big deal was. My fiance called. Wanted to know why I wasn't at home. I know his job is stressful so I told him I was out with friends, all this from a bed in the ER. All alone. Then my (new) neurologist walked in. They aren't known for their bedside manner by the way. In 2 sentences he diagnosed me with an optic neuritis attack and subsequently, Devic's, put me on steroids and sent me home. I took a cab home and let myself in to the greeting of our dog. I was confused. What just happened here? So I googled naturally! As an exercise, Google should google an obscure reference/disease/anything every once in awhile just to see what really pops up. It's actually quite frightening. It took me 2 minutes to realize this was definitely not a good thing but I had to pack and move us out before tomorrow morning. So blind in one eye, I did. It wasn't until I (half) saw our photos on the wall that I suddenly burst into tears. How was I going to tell him that today I was labelled with a disease? How was I going to make this move happen, right now, without asking for help so no one clued in? Trying to drown my tears I got into the shower, still wearing clothes but the water beating down on me just made my skin burn more, so I cried harder. What just happened?! That's when my sister found me. She had let herself in when the hospital told her I had already left.
I managed to make that move happen. Our new bathroom is my favourite room in the house. I found a way to tell my fiance the truth when he got home. I sent an email to everyone in full disclosure. I even got my vision back in my left eye. But now everyday I live with NMO. It's not who I am but it is a part of me.
So as Coldplay sings it, "Nobody said it was easy. Nobody said it would be this hard. I'm going back to the start." And that's exactly what I did.
I was travelling through Europe the summer of 2008 with a close friend. I remember the day...the sun was shining, I had just bought a new purse, we were in Venice, Italy. Then my right forearm caught on fire. It felt like a bad sunburn but it wasn't red, it had no rash. I was confused. We ran to the "farmacia" and I lathered an entire bottle of aloe vera on my arm. Nothing helped but I refused to miss gelato and our group so we trekked on. The next day the pain went away and I was once again invincible. An entire year went by and every time I felt stressed out or tired that burn would show up. It moved to a new place on my body each time but would disappear again by the next day so I never saw a doctor. Besides, what would I say? My body is on fire but I see nothing?
Finally in the summer of 2009 I went in for a routine check up. Turns out a lot of women saunter around with bladder infections so I was put on antibiotics. Unfortunately I had a bad allergic reaction but with the standard inflammed ears, swollen throat and vomiting, the horrible burning returned except this time it was my entire body. Once the symptoms from the reaction went away the burning never left. Finally my GP flagged a serious concern. Now, I have to mention that at this point it was 30 degrees celsius outside so no one noticed that I wore very little clothing but the truth is, even the dog brushing his tail by me set me off in a scream similar to a bad slasher flick. Being in Canada and all, I had to cold call myself into a MRI (which I finally found a cancellation for at 3am) or wait 6-9 months for my appointment. Then I had to cold call myself into a neurologist or wait the same amount for one to read the MRI. My American friends always seem so envious of our universal health care system (thank you Michael Moore for painting such a beautiful picture) and up until this moment I was very proud of it too but since I've really had to rely on this system, I'd vote NO with conviction. Anyways, the first neurologist didn't see lesions on my MRI so he flat out said I was crazy. The next neurologist thought it was leftovers from the allergic reaction so finally in a desperate state I found naturopathic solutions. I hate needles but I was that desperate I tried acupuncture and it worked...for the short term.
I love high heels. Yes, even the most expensive heels still hurt but geez, they look fantastic. I have a pair of Cole Haans, leopard print with Nike Air in them. I know, crazy they make those, right? It was September 22, 2009, the same day as my niece's birthday and I always remember the shoes because they later become a goal. I got out of the subway system amongst the crowd and within the 2 blocks walk to my office I had this awful sensation go up both my legs at the same time. It felt identical to your foot falling asleep, except I was walking and I hadn't been sitting before that. Maybe it was cold, maybe these shoes are really bad for me, maybe I shouldn't have gone out to a film festival party for so late the night before. Just as quickly as the feeling happened it passed so I thought nothing of it and carried on to work. It wasn't until mid afternoon that I realized I hadn't moved from my desk all day. I hadn't even felt the need to go pee. When I tried to get up it was as if I had lost control of the bottom half of my body. I should have gone straight to the hospital but I didn't. Truth be told, I hate doctors or rather, I hate people touching me, so I taxied home, ordered a pizza and waited on the couch for my fiance. Another hour went by and I had to admit to him that I probably needed to go pee except I didn't know for sure. He gave me this odd look or the TMI face and when I tried to get up I toppled over. The next 12 hours were a blur in the ER. I had several doctors perform neuro function tests, several MRIs, evoke potential test and even a spinal tap. I was checked into a room with a cranky roommate and they even took my blackberry. It took a week to get out of that hole. The nurses were nice but transverse myelitis sucks. I wanted to play with my dog, go to the movies with my fiance, finish the projects at work. It took almost 2 months of hard work to walk again. If I hadn't been so high on the painkillers I probably would have been really scared. They sent my blood to the Mayo Clinic but it came back negative for NMO.
Months went by then the spasms happened. I called off our destination wedding in Mexico. Spasms are 2 minutes of hell. I've even blacked out from the pain. I gained weight from the steroids but I never noticed because I was so confused. I even lost my job so I lived off of credit until I figured out what was happening.
It was now January 2010. My fiance was called to Haiti to cover the earthquake (he's a journalist). I promised to hold the fort down but the day after he left I suddenly lost vision in my left eye. I wear contacts so I actually thought I damaged the eye because it didn't hurt. Since I had a doctor's appointment on Tuesday I thought to just wait the weekend. When I saw my specialist and told him the symptom he panicked. I didn't know why everyone was making a big deal. No one laughed at my bad jokes. I was rushed to the ER. Our contractor called that he could start renovations on our bathroom earlier than scheduled (tomorrow!) and could he please start. I called our rental property to arrange the change in date. My sister went home to let the dog out since I was apparently spending time in the ER. I still didn't get what the big deal was. My fiance called. Wanted to know why I wasn't at home. I know his job is stressful so I told him I was out with friends, all this from a bed in the ER. All alone. Then my (new) neurologist walked in. They aren't known for their bedside manner by the way. In 2 sentences he diagnosed me with an optic neuritis attack and subsequently, Devic's, put me on steroids and sent me home. I took a cab home and let myself in to the greeting of our dog. I was confused. What just happened here? So I googled naturally! As an exercise, Google should google an obscure reference/disease/anything every once in awhile just to see what really pops up. It's actually quite frightening. It took me 2 minutes to realize this was definitely not a good thing but I had to pack and move us out before tomorrow morning. So blind in one eye, I did. It wasn't until I (half) saw our photos on the wall that I suddenly burst into tears. How was I going to tell him that today I was labelled with a disease? How was I going to make this move happen, right now, without asking for help so no one clued in? Trying to drown my tears I got into the shower, still wearing clothes but the water beating down on me just made my skin burn more, so I cried harder. What just happened?! That's when my sister found me. She had let herself in when the hospital told her I had already left.
I managed to make that move happen. Our new bathroom is my favourite room in the house. I found a way to tell my fiance the truth when he got home. I sent an email to everyone in full disclosure. I even got my vision back in my left eye. But now everyday I live with NMO. It's not who I am but it is a part of me.
So as Coldplay sings it, "Nobody said it was easy. Nobody said it would be this hard. I'm going back to the start." And that's exactly what I did.
NMO Confessions
For the longest time I thought I deserved this disease because of all the horrible things I've done in life, for all the horrible ways I've behaved. My sister calls that growing up and maybe one day I'll fess up and tell you all about it but for now just understand I have underlying guilt. It wasn't until recent though that I started to feel that maybe this happened for a reason. Title it my calling in life, fate or even payback but this is what I have become.
My name is Jenna. I'm 29 years old and live in Canada. I have neuro myelitis optica or for short, NMO aka Devic's Disease. A little over a year ago it became obvious to me that my life had changed forever. I know that sounds really dramatic (and trust me, I did everything I could to act normal) but the truth is, I was really scared. As things started to unfold over the last year I found there were little or no resources. Last week I attended the Guthy-Jackson Foundation patient day in LA (thankfully found on the internet) and the one thing I kept hearing over and over again from all the patients, including Erin and Chris who I hope to be co-bloggers here, was how alone we all felt in the beginning. We all have a lot of love and support from our families and friends but we still feel/felt lonely because none of them really know what it's like in our skin everyday. So here it is: my NMO Confessions. Whether you're a loved one, a patient or even a clinician, I'm hoping that by sharing my daily struggles, triumphs and unfortunate disappointments I can make the NMO world just a little less lonely.
My name is Jenna. I'm 29 years old and live in Canada. I have neuro myelitis optica or for short, NMO aka Devic's Disease. A little over a year ago it became obvious to me that my life had changed forever. I know that sounds really dramatic (and trust me, I did everything I could to act normal) but the truth is, I was really scared. As things started to unfold over the last year I found there were little or no resources. Last week I attended the Guthy-Jackson Foundation patient day in LA (thankfully found on the internet) and the one thing I kept hearing over and over again from all the patients, including Erin and Chris who I hope to be co-bloggers here, was how alone we all felt in the beginning. We all have a lot of love and support from our families and friends but we still feel/felt lonely because none of them really know what it's like in our skin everyday. So here it is: my NMO Confessions. Whether you're a loved one, a patient or even a clinician, I'm hoping that by sharing my daily struggles, triumphs and unfortunate disappointments I can make the NMO world just a little less lonely.
Subscribe to:
Posts (Atom)