It’s been a bit of a rough month. In early February, I was pretty sick with a cold. (This is a very rare occurrence for me.) In a moment of desperation, I broke one of my own cardinal rules of “no over the counter medications.” I was experiencing an itchy cough that would leave me gagging and gasping for air, so I took something to try and help calm it. I was so focused on making sure the medicine didn’t contain red food dye (I am allergic to it and 99% of cough syrups contain red food dye) that I didn’t realize the medication contained acetaminophen, which I am also allergic to. I ended up with swelling and hives that burned like I’d been dipped in hot oil and I felt terrible. It took 6 days of steroids and 10 days of Benadryl every 4 hours before it was under control. I won’t ever make that mistake again!
I am about a week away from my second round of Rituxan infusions for NMO and RA. I am really curious to see if I can get through an entire summer without an NMO relapse. If I do, it would be the first time in 10 years. I dread summer because I always end up having to do IV steroids and I don’t do well in the heat. I hibernate the entire season, going out as little as possible, unless it’s cooler and raining. This year will be an experiment to see if things can be better or not with the new treatment.
I am still working on getting the RA under control. My knee joints have thankfully stopped hurting for now. That’s a huge relief-the pain was excruciating to the point that I was wondering how feasible it would be to chop my legs off. (Okay not for real, but you know what I mean.) My hands and fingers are still painful off and on, but better that they were. I still have what’s being called tendonitis in my right elbow which is giving me grief. It affects my ability to do even the simplest of things and greatly impacts my ability to sleep. I am going to have a cortisone injection in the joint after my Rituxan infusion. I am completely freaked out about this, (I had a cortisone injection in my wrist once and it was awful experience) but if it helps, then it will be worth it. In addition to Rituxan, I am also doing weekly injections of a chemo drug and taking a heavy duty anti-inflammatory to try and get the RA to settle down. This means I am struggling with a fair level of nausea on an ongoing basis, which is not fun.
So, I am muddling along. I am grateful for the small improvements as they’ve happened and hope the trend towards less inflammation and pain continues. I am not the most patient person, as my friends will tell you. I tend to want to accelerate the rate at which things get done-that’s just my nature. Dealing with all of this has forced me to surrender to the process, which is hard. I am not very good at “wait and see” however, that’s about where things are at.
Wishing those of you who are lucky enough to be able to go to Patient Day in LA in a couple of weeks a safe journey and I look forward to hearing all about it.
I am, and have always been, pretty independent. Even after I was diagnosed with Neuromyelitis Optica/NMO, I drove to my doctor’s appointments and outpatient treatments alone. Then I began losing my vision because of the NMO, and I continued to live by myself, learned to prepare food and pay bills and do laundry all on my own.
And then I met John, now my husband. He respects my need for independence, but I’ve since learned it’s nice to sometimes count on others, too. Whether it’s reading an expiration date on an item in the pantry, discerning between the shampoo and shower gel in a hotel bathroom, or navigating the New York City streets or the grocery store aisles, it’s easier to ask John than to figure it out on my own.
NMO and vision loss have taught me that it’s okay to ask for support. I’ve learned that most people are willing to assist, and that if you express gratitude, they’re even happier to help.
For that, I value my husband, and I want to dedicate this week’s post, in honor of Valentine’s Day, to all our caregivers, from parents to siblings to spouses to friends. Without you, we’d still survive, but with you, we’re much happier doing so. Thank you for making our lives with NMO that much more bearable.
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.
**This post was originally published on my blog on October 28, 2016.
This video shows Sady, a woman with cerebral palsy, using Apple technology to edit videos. What’s mind-blowing is the video was actually edited by Sady herself using the very same assistive technology.
Last Wednesday, Apple announced the launch of their redesigned Apple accessibility website, which now includes videos showing how people of all ability levels use Apple technology to achieve vocational goals and do everyday tasks. These videos not only empower people living with disabilities, they also challenge everyone to rethink what a person can and cannot do regardless of abilities.
Thank you, Apple, for keeping the bar high and being a pioneer for adaptive technology!
An Apple Fangirl
P.S. In keeping with their mission, here’s an audio-described version of the above video.
Two weeks ago I had an Appointment with Dr. Michael Levy at John Hopkins. Since Eric and I were traveling all the way from Colorado we decided to Make a long weekend trip and see some of the Monuments in Washington D.C. It was my first time to the east coast and it has been over 10 years since Eric was there. We decided it would be best to leave the kids at home and enjoy a couple’s getaway.
Our flight left late Wednesday night and we flew into Dulles we arrived at 11:30 p.m. Time we got the rental car and drove to the hotel which was in Old town Alexandria in Virginia. It was 1:00 a.m. so we were exhausted. Thursday morning we slept in little and woke up and explored Old town for a while and had breakfast before heading into D.C. We decided to take the metro train into D.C so we didn’t have to worry about parking and traffic. We got off the train at the National Archives and walked through the National Mall heading to the Washington Monument. I couldn’t believe all the museums at the National Mall. You could spend weeks going through all the Smithsonian Malls and other museums. As we approached the Washington Memorial it was just incredible how tall it was and all the different people from around the world was just staring up to the top of it.
Next we walked down to the World War II monument that was very beautiful to see and peaceful. As we headed to the Lincoln memorial we walked right along the reflecting pool. Which is way bigger in person then what you see on TV. When we were at the bottom of the Lincoln memorial I was thinking how am I going to climb all these steps since my NMO Symptoms are starting to hurt from walking so much? I have been walking a ton and I didn’t want to burn myself out since we still want to go see the Vietnam Wall and the White House. When I slowly climbed the stairs to the Lincoln monument and reached the top it was just gorgeous to see! It was remarkable to see how big it is and seeing it on T.V is just not the same. The Lincoln memorial was my favorite memorial to see by far. Once we were done looking at it and reading all the stuff from Lincoln we sat on top of the steps and people watched. I just could not get over how many foreigners where there looking at our American History. The sad part that there were not very many Americans there looking at our history. I had to rest for little bit before we started to walk down all the steps.
The next memorial we looked at was the Vietnam wall that was very humbling to see. Just seeing all the names and all the flowers and gifts people leave there at the wall. After that we caught a cab to head over to the White house since I was getting worn down. It was kind of crazy getting out of the cab and having to walk to get close to the White House. Since you can longer drive on the street in front of the white house and the back of the white house. The have barricades up so you can’t even get close to the fence that surrounds the house. The secret Service guys are very on point and can be a little rude and kind of jumpy with people. We simply just walked all around the White house then I had to take a rest on the Southside of the lawn. So we could walk even more to get back to the train station and head back to Old Town. When we arrived back to Old Town we ate at a great Oyster bar called Hank’s Oyster’s I highly recommend checking it out if you are ever in that area. By time dinner was over we were wiped out and ready for bed since we had a 45-minute drive to Johns Hopkins in the morning and I needed to be there at 9:30 a.m.
Friday morning bright and early with a Starbucks in my hand we headed off to Baltimore to John Hopkins to see Dr. Levy. Eric was worried that traffic would be very bad and would take awhile to get there. We made good timing arriving at 9:00a.m. I have always enjoyed Dr.Levy I have seen and listen to him speak at Guthy Jackson Patient Day for seven years. I have always wanted to fly out and go see him and I was thrilled I got that opportunity, Dr. Levy and I spent a over an hour going through my NMO history and what issues I would like to address. He would like to switch some medications around and do some blood tests and follow up in a few weeks. Since I have been diagnosed for 8 years there was a lot of information that needs to be talked about. Plus he wants to look at my MRI’s when I was first diagnosed to my latest MRI’S to see how my lesions are doing.
After leaving the Hospital we drove around Baltimore a little bit then we went to a crab place that had really good reviews for crab. Eric wanted crabs right out of the bucket. Like when he lived in Virginia Beach. So that was a nice lunch. We decided to take a scenic route back to D.C I wanted to check out Georgetown. LOL it seemed like a good idea but it kind of a pain but we made it to Georgetown the next tricky part was finding parking. It took us awhile but Eric got it done. I wanted to go shopping and stop at my favorite cupcake store Sprinkles! If anyone really knows me I am very addictive to these cupcakes. If I am visiting a city and they have Sprinkle store I will be most defiantly will be stopping by and buying cupcakes. After shopping for a while we headed back to the hotel and rested for a bit and went to a late dinner at a fabulous Southern food restaurant called Hen’s Quarters. It was the best-fried chicken I have had in a long time. We took a nice stroll down King Street after dinner and headed back to hotel cause we were pretty beat.
Saturday was a very special day we decided to spend the day at Arlington Cemetery. I wanted to see the tomb of the unknown solider and the changing of the guard. But also were the Kennedy’s are buried. Also I wanted to spend our last day at a place that was not going to be too crowded with people and was going to be not so noisy and just spend a quite day getting ready to go back to reality. I loved watching the changing of the guard and over all seeing the cemetery and seeing where JFK is buried. We spent about 4 hours walking around the cemetery. We headed back to hotel around 3 and went to a local bar and had a few drinks and went shopping a little bit then off to Hank Oyster Bar again because they had the best crab cake we found during our vacation. We enjoyed our last romantic dinner. Since we had an early flight on Sunday Morning.
Now that I am back home I am still waiting to hear back about the blood tests and on Friday I have an Appointment with my neurologist about what Dr.Levy said and the new medications I Need to try. So I will keep you all posted!
Happy autumn everyone! Here in Canada, we’re on the last day of our Thanksgiving weekend. Mine started out Friday morning with an early morning field trip to the University of British Columbia’s Museum of Anthropology (MOA). Visiting this particular museum has been on my life list for ages and I finally had the opportunity to see it thanks to an amazing local group I belong to called Creative Mornings Vancouver. This month, they arranged for members to attend one of two tours before the museum opened for the day. One was about the tools the MOA uses to preserve and treat the pieces in their collection and the other was learning about the stories behind some of the pieces that were created to provoke social change. The day began with a lovely breakfast of pastries and tea and coffee and after the guided tours, we were able to enjoy the rest of the museum at our leisure.
MOA is home to an impressive collection of Canada’s First Nations’ art, but also exhibits indigenous art from other parts of the world. The size and diversity of what’s on display is almost too much to take in in a single visit. My favourite part of the museum is the great hall. The totems and other large scale pieces housed there are incredible. The outer wall of the hall is floor to ceiling glass, giving the illusion of being outdoors. The natural light in the hall really shows off the beauty of the wood and the colours used in the totems. It’s been 3 days since I was there and I am STILL absorbing everything I saw. As an artist, it was incredibly inspiring.
Sunday, we had friends and family over for turkey dinner. I always do our Thanksgiving on the Sunday so Monday we can coast on leftovers and relax before everyone has to go back to work. I was a bit apprehensive about hosting the dinner this year because I have really been struggling with my heath and especially with pain from RA. I don’t know what I was worried about though-every time I asked someone for help with something, they were great about jumping in. My son set the table, my best friend carved the bird, my husband and son took care of all the dishes afterwards (we don’t have a dishwasher) and somehow managed to get all the leftovers to fit in our fridge. (It’s like Tetris in there, but hey, whatever works!)
Today, I am relaxing and feeling grateful for such a great weekend. It’s good to be reminded that there is beauty in the world and to be surrounded by the people I adore.
Happy Thanksgiving to my fellow Canadians! I hope your weekend was full of good memories, great food and time with those you love.
Last month, I started on Rituxan. My first infusion was going to be run over four hours, but ended up taking four and a half hours. I was fine for the first hour and a half and then my throat started to feel really raw, I began to cough and eventually I was sneezing so I asked the nurse if this was a reaction to the infusion. Turns out it was. At first, she tried to talk me into toughing it out. I am really drug sensitive so didn’t think this was a good idea, especially when she said she would be turning the flow rate of the IV up. I insisted she give me some Benedryl and steroids to stop the reaction. She turned the IV off for about half an hour to give the medications time to work and once I felt better, turned it back on. I was fine for the remainder of the infusion. The first day after the infusion, I felt okay. By the second day, fatigue hit and I spent the next two days napping off and on. It took me a bit to figure out that this was how my body was dealing with the infusion.
For the second infusion, two weeks later, I was told to take 50 mg of prednisone (steroids) early in the morning, instead of late the night before, with the hope that I would sail through the infusion more smoothly. I woke up at 5 a.m. to take the steroids. Not the best taste first thing in the morning (or any time for that matter) but it seemed to do the trick. This time, I was able to do my infusion in just three hours. My next round will be in late February next year and those infusions should be done in two hours.
It’s been interesting switching to a biologic. I am taking it to treat another autoimmune disease I was diagnosed with recently-the fact that it also works for NMO is just a bonus. For the first time in nine years, I am not constantly taking a handful of pills or giving myself a daily injection. I am also no longer taking prednisone, aside from the 50 mg pulse I do right before the infusions. It’s really hard to wrap my head around this. Weirdly, I feel like I should be doing more. I am really hoping that this biologic works for both diseases and I can finally feel better. As I mentioned in my previous post, it’s been a really rough summer-I have been the sickest I’ve ever been and it’s been pretty scary.
So far, I have the fatigue for a few days after the infusions. I’ve lost my appetite-I am only picking at meals. I am still in a considerable amount of pain which right now is my biggest concern. I was told it can take a month or more to see the benefits of the Rituxan. I am hoping it kicks in soon. Meanwhile, I am working on recovering as best I can and trying to get on with my life. We are transitioning to autumn weather here on the west coast of Canada, so the cooler temps are lifting my spirits. (Autumn is my most favourite time of year.)
I hope things are good in your neck of the woods!
Things have been quiet at my end for the last 3 months because I’ve been pretty sick. My time has been taken up with medical appointments, tests, referrals and just trying to survive. I’ve spent a lot of time in bed, feeling awful. That’s not my normal-I am usually quite busy and like it that way.
To try and keep myself entertained I’ve been falling back on photography, which I enjoy. I have a DSLR camera, but it’s too heavy to lug around, especially when I’m not feeling well and seeing as my “outings” are simply to walk my dog, my iPhone has been my go-to. Nothing wrong with an iPhone camera-it does just fine, as you can see.
Being home more has meant my best friend Indiana Jones has been keeping me company. He’s a good pal to nap with. I did manage to get up to the lake early one morning before it got too hot and manage to capture this half out of frame shot of him with his water Kong, which I actually really like.
It’s also meant slowing down and noticing the small details around me like the lichen and moss on the bark of a tree in the park near our home and the secret apple tree I found by accident. I am now watching these apples and plan to pick some when they are big enough!
The Olympics are now on, followed by the Paralympics. Anyone who knows me, knows I am a huge fan of the Games. I’ve been watching on my iPad and cheering for Team Canada. Team Canada is made up of 60% women athletes! Our ladies have been having huge success and we’re only on day 3! I am watching women’s footie (soccer) and women’s 7’s rugby obsessively. GO CANADA!!
So that’s pretty much been my summer in a nutshell. I am keeping this short because my vision is blurry and my hands are not typing as well as they usually do. I am waiting for treatment, which I am hoping to have booked some time in the next week or so. I am more than ready to get my life back.
I imagine I’m probably one of the worst patients to treat. I fully understand the advice I receive but I’m horrible at following them. We’ve all been told it; Stress can really affect how we handle existing and future problems arising from having neuromyelitis optica (NMO) and admittedly, I’m in the habit of taking on quite a lot.
I love to work hard and I work to live well. The type who suffers from wanderlust, adventure and trying new things, I generally only operate at hyper speed. A couple of months ago I knew I was at yet another crossroad. Where previously I could manage daytime fatigue, the burning sensation and general pain, my body had started to feel sluggish, unresponsive and exhausted. I tried to sleep it off, eat well and rest but I couldn’t bounce back. I recently blogged about a flare as a result but still couldn’t feel better. (more…)