Just Between Friends or JBF

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For the last three years I found a great franchise that I participate in to buy and sell my kids clothing, toys shoes and etc. It is called Just between Friends they have sales across the United States. The first year I was just a buyer and I couldn’t believe the prices on everything! Things are 50-80% from regular prices. All the items are gently used or some times brand new with tags on. I said to myself after my kids move past the 12 months size in clothing I will consign to the sale. So twice a year I sale to JBF it takes me about a week to get ready for the sale and now that I have been doing this for 3+ years I have came up with a system and figured out what it takes and how to price my items so they sale well. Once I hang up all the outfits on the hangers and secure them on the hanger so they do not fall off. I jump on the computer and login to the JBF system and enter in all my tags then I print them off and start tagging all the clothes and whatever kid’s items I need to sale. Once all my items are tagged I load all the items into the car, which is the night before I have to drop them off.

 

The next day I have someone watch the kids while I go drop off the items at the JBF sale. It roughly takes me an hour to put all the items on the sales floor. Since I sell items at the sale I get a free pass for myself and a guest to go shopping before the sale opens for the public. My mom comes with me to help shop and it can take us 3-4 hours shopping at this massive sale for two kids. It all depends how much stuff I need to buy and how much clothes we have to look through and shoes. I found some awesome deals on toys as well. I cannot say enough good things about going to these JBF sales it has saved me a lot of money for clothes, shoes and toys. I usually make enough money selling my items that it covers half of what I spend at the sale. Keep in mind I have not started selling my daughters clothes yet she is still in 12 month clothing. I encourage you all to spread the word about this great organization. Below is the website to see if there is a sale near you!

 

http://jbfsale.com

 

 

22
Sep 2016
POSTED BY Erin
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Medicinal Marijuana for NMO

Throughout my NMO journey I’ve tried to keep an open mind towards alternative medicines. I’ve had great success with naturopathic care, acupuncture and osteopathy so when many of my trusted friends suggested cannabis, or medicinal marijuana, I thought it worthwhile to look into it. Cannabis has a bad reputation; Many people think marijuana is for a bunch of hippies getting high and eating Cheetos. Others think getting a marijuana prescription is just for those making up mild conditions who want to get high. Whilst both might be true in our world there are some fantastic testimonials from real patients.

I’m not the type to role a joint and get high but throughout my research I discovered CBD oil, or Cannabidiol, which can be consumed with a few drops on food, in drinks or straight under the tongue.  You can even diffuse CBD oil but others in the room will also feel the effects. There are many strains that have low or no THC levels, which is the component that gives the feeling of being high. I was transparent with my family doctor that medicinal marijuana was something I was considering. He was honest that he didn’t have extensive experience nor could he prescribe it but he did refer me to a reputable clinic that did.

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I’m fortunate that a close friend happens to be a key sales rep for one of the major distributors of medicinal marijuana products in North America. He spent a lot of time understanding my symptoms and suggesting the best CBD oil products. Here are my take-aways of CBD oil:

  • It still stinks. If you dislike the skunky smell of marijuana you still won’t like the oil.
  • Marijuana strains are very different and have names like Indica, Sativa or Hybrid. ie. Some help with insomnia, pain management, fatigue and/or several different combinations.
  • Each production changes so although manufacturers try to keep the potency levels as close to the last run it’s never exact. Remember, marijuana is a plant.
  • Because of production changes, prescriptions suggest amounts but the patient will need to dose up or down for each new bottle.

I tried CBD oil for several days and I’ve made the decision it isn’t for me. I dosed up and then more (and then more) and could never get the same relieve prescription medication provides me. I struggled with the taste (it was not that noticeable but did have an aftertaste) and after a certain amount I did feel somewhat paranoid. The one positive about CBD oil was that it helped with my insomnia but my other needs were not met. I felt frustrated trying to convert the prescribed grams into millilitres and then into how many drops that translated into.

I think there’s a place for medicinal marijuana but we’re still in the infancy stage. Doctors don’t have enough historical data to understand how the drug might best help different diseases. I can certainly see how marijuana might one day be part of the treatment plan for NMO patients and I know many who already do. The marijuana drug industry is regulated (and legal in many countries and states) but it’s tough for governments to monitor it. Uneducated patients may purchase from small retailers instead of one of the larger manufacturers direct and might purchase marijuana that is unsafe (ie. With pesticides or cross contamination). If you do decide that medicinal marijuana is something you want to try spend the time researching and choose a reputable clinic, doctors and distributors.

Update on Erin after 11 days in the hospital doing PLEX

Here is a video update and some pictures of me doing PLEX.

 

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25
Aug 2016
POSTED BY Erin
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In Survival Mode

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.

 

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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.

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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!

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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.

 

08
Aug 2016
POSTED BY Lelainia Lloyd
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ALLEN 1st year playing Tball

YouTube Preview ImageThis year marked my 1st year being a sports mom. Allen started Tball in April and finished playing the end of June. We signed him up to play Tball for a few reasons one main reason was so he could play with other kids and second was his best friend from school was also playing Tball. I was nervous about not knowing if he really would enjoy playing and of coarse his attention span. For this being his first year he did a pretty good job. Allen really enjoyed hitting the ball but that’s about it. When he was suppose to play in outfield he would just sit there and play in the dirt. It took him a little while to learn the base patterns but for 4 years old he did a pretty good job! He was Happy T ball was over the end of June since it started to get hot and some of the games he played was almost 100 degrees. The most important thing out of this is that Allen had fun and he met new friends. Hope you all enjoy the photos and the video of him playing. The lesson I learned out of being a sports parent that I wanted to be one of the parents that helps with the team and get to know the kids that are playing on the same team as my son. The other lesson was learning to juggle everything on Saturday for games that were right in the middle of the day.

 

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18
Jul 2016
POSTED BY Erin
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So Many Pills

I know it’s a gripe that I share with most NMO patients – having to swallow a lot of pills several times a day. I organize my medication in a daily pill organizer. Because it has become part of my daily rituals, I find myself often second guessing if I even took them today. Being able to check my pill organizer answers that question.

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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.

Accidental Event Planner

Thank you to the lovely ladies of NMO Diaries for asking me to guest blog about our 5km Walk/Run which takes place on Sunday June 19 at Rocky Point Park in Port Moody, British Columbia, CANADA.

As we enter year 4…yes that’s right…year 4 and as I sit down to type this out now, I find myself reflecting a lot on why this event even exists. The short answer to that is that this event exists because my son, Riley, was diagnosed with Neuromyelitis Optica (NMO) on November 23, 2011.

I recently happened upon the following quote and really, it describes perfectly why I do what I do for my child.

MY PROMISE TO YOU:

To fight for you

To protect you

To be your voice

To always love you.

 

Pretty simple right? As parents, this is basically our job, but throw in a diagnosis that you have no control over and these words take on a whole new meaning. Early on in Riley’s diagnosis, I learned that I had no control over what was happening to him and that no matter how hard I prayed and pleaded, NMO was not something that I could take away from Riley and transfer to myself. I must admit, that has been, and continues to be, the hardest part of this journey….I cannot take it away and I cannot transfer it to myself!!!! What I have discovered, however, is that I CAN fight, I CAN protect, I CAN be his voice, and I CAN love!!!!

Once I figured that out, I thought about what I could do to fight this monster that had grasped my child so tightly. Those who traveled with us for that part of the journey, will remember the seemingly endless violent relapses and the happy homecomings and then another relapse. This repeated itself over and over in that first year, and as I type this now, I stop over and over to collect myself as the waves of memories from that horrible time almost suffocate me. As I catch my breath, I can only think “Thank God that right here, right now, we are no longer there”, and yet during those times it seemed like it would never ever end. (you can read a glimpse of the story at www.nomorenmo.com ). In those days, I was a runner and found very quickly that running allowed me to process and to grieve as I pounded my feet into the earth. It became for me, my therapy, and I am grateful to have had the strength and the endurance to be able to run and work through this very difficult part of our NMO journey. It was during one of those runs that the thought came to me to have a run specific to NMO. I visualized a sea of green and what a blessing it has been to see that become a reality. When I founded the First Ever 5km Walk/Run for Neuromyelitis Optica (NMO) in 2013, I had no training in event planning. It was then, and continues to be, frustrating at times, but then I remember my promise…to fight, to protect, to be his voice and to love. This event is my promise come to life in battling the monster that lives in my child. It has become so very much more than that now. In times of grief and desperation, we find comfort in those who just “know” exactly what we are feeling. Early in Riley’s diagnosis, I sought out support. I was searching for people who understood what I was going through and that search produced so much more than I could have ever imagined. What I found was a family…a group of people that opened their arms and their hearts and invited me in. At the very lowest times, they have been the arms that have surrounded me and at the highest moments, they have rejoiced and celebrated loudly with us. I have been blessed so far beyond what I ever imagined and I struggle to find a word big enough, loud enough, to express my gratitude for this incredible group of people that never would have been a part of my life had NMO never entered our world. So you see, an event that was started because one little boy received a diagnosis, now continues because that monster has grabbed ahold of too many people that I love. To each of you who battles this disease, I extend my promise also to you. I will fight for you, I will protect you, I will be your voice and I will always love you.

As we prepare for year 4, there are many emotions, and over the years, I have started to see a pattern in that. At this moment today, I am wondering what our sea of green will look like this year. Our registration, although off to a good start, is very slow moving right now. Those who know me well, know that causes much panic in me. I celebrate every registration as it comes in and with each name I see, I hear the words, “I’ve got your back”. I always think back to the movie, Field of Dreams and the line “if you build it, they will come.” I think okay…”if you plan it, they will come”, which totally makes sense because there is no way the people in our lives would leave us standing alone!!! Last year, we had 16 people with the diagnosis of NMO on our race site and what a blessing it was, and will continue to be, to provide a place for these amazing people where they can feel loved and supported while we work towards our common goal of a CURE! Who wouldn’t want to be a part of such an amazing experience!!!! We have made it so easy for anyone, anywhere, to be a part of this event. If you are unable to be there in person, we have a virtual participant option which just lets you say, “we can’t be there physically, but we CAN fight this with you.” Each year, I write the names of all of our virtual participants on my race shirt so that I bring you with me onto the race site.

So there you have it! Never in my wildest dreams or plans did I ever even think that I would found an event or become a rare disease Advocate, but each year, each speaking engagement, confirms that I am exactly where I am supposed to be at this moment, on this journey. It is a wild, emotional, scary, never ending ride, but it has been filled to overflowing with blessings and has taken me places that I never ever imagined I would go. Thank you to the amazing people in my life, who even when this journey has been at its most treacherous, buckled up their seatbelts, and stayed by our side.

 

Would you like to register for our event? Please do so here:   https://www.raceonline.ca/events/details/?id=1186

 

Would you like to donate to our team/event? Please do so here: Team Reimer pledge page: http://pledge.at/teamreimer or General donations: http://pledge.at/nmo

 

Would you like to see what all the hype is about, watch highlights from our last 3 years here: https://animoto.com/play/hHjb2xjvnYgUtFQeSek2ZQ

 

Please join us, in whatever capacity you are able, in making a difference in the lives of those who live daily with NMO. Every dollar donated and every step taken brings us closer to a CURE!!! #BecauseItMatters

 

10
May 2016
POSTED BY Erin
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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

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What it’s like to get IVSM treatment

I do not cry wolf. In fact, I’m the type who will try to fight the wolf alone then only when it has half eaten my arm will I contemplate if perhaps I should have asked for help. That is how I am with this disease. Stubborn, relentless and unapologetic about it. It’s not the best strategy but it works for me.

2 weeks ago I had to finally admit defeat when I found myself in the ER and was prescribed 3 days of IVSM (intravenous solumedrol). Truthfully I’d been struggling for weeks before, noticing fatigue, weakness and then excruciating back pain. I first visited my family doctor, desperately hoping it was all in my head, but the moment he saw me he calmly said, “I think this time we can’t ride this out.” It was upsetting because I’ve been holding stable for several years now. In a lot of ways, I’ve been carrying on like the disease doesn’t exist in my life. I felt defeated, overwhelmed and angry. When I finally made my way to the ER it was dirtier and sicker than I remembered. I was uncomfortable with the fuss everyone made. My first dose was administered in the ER and then I was sent home, where a home care nurse would visit and administer the 2nd and 3rd doses. I managed that 1st dose alright. It instantly made me feel sick but it also started to relieve the back pain. And then this is where I really struggled.

I had to take a forced break from work. In my head I was trying to tough it out and carry on but my body just gave up. I barely remember the days that followed, living in my bed with my supportive husband raising our daughter alone and bringing me meals. I refused to tell friends and family my condition. Some found out and each time I felt like I let them down.

My daughter is almost 4 now. She’s intuitive and knew “Mommy is really sick”. She spilled the dirt to everyone she ran into, obviously really concerned. The home nurse had to put in the IV. I didn’t want her to worry so I let her watch and made it very matter of fact. I hate needles and hate IVs more but as a parent my first concern is how she feels. The moment tested my strength because I didn’t want her to see how tough this really was. Afterwards we wore matching mesh armbands, mine to cover the IV plug, hers as a fashion statement.

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I’m not at 100% yet but I’m doing my best to pretend I am. Last week I returned to the hospital for a 2.5 hour MRI. This disease has so many ugly moments and for me this was one of those. I tell myself that unfortunately not every day can be a good day but instead I’m focusing on those things I’m so grateful for – my family, the medical care, and that it’s been a decent run between flares.