This is only the second time I am posting specifically about my illness. When I was diagnosed with Multiple Sclerosis, I was so afraid that it would be how people defined me: 'Oh that girl with MS.' 'Did you know Emily has MS?' But I feel like the events of this last year regarding my health are too important to not share...
I find it interesting that when I am finally public about my challenges with this disease on social media a year ago, I then proceed to have one of the hardest years in the last decade. I had been blessed for so long with good health that I'm pretty sure I took it for granted. I may have even been a little arrogant about it.
I started losing my energy after Boy was born. He, as I have mentioned so many times, was a very challenging baby. I just believed that my unbelievable fatigue was because not only was he not easy to raise, but I had two kids now and a husband who was gone for work a lot.
It was after Boy was born that I also decided to go off of the injections I had been taking for so long. They presented another host of challenges. I wasn't comfortable with the other options on the market, so that's when I started an experimental treatment. Just because it may have worked for a large majority of those taking it, it didn't necessarily work for me.
I had my annual MRI done in January of 2014. (I should have known something would be off--it was #13.) The scan showed an extensive amount of new lesions. MS, in case you don't know, is scarring in the central nervous system when a person's own immune system dymyelinates the protective sheath that surround the neurons. When this happens, these scars flare bright white when a contrast dye is injected into the blood during an MRI. Let's just say that my brain looked like a fireworks show.
I was so upset. I hadn't had to deal with this for years and I didn't really want to deal with it now! I convinced my then-neuro PA that we should just repeat the scan in 6 months. After all, I had just been through some of the hardest 18 months of my life. Stress is known to have a negative effect on people in my condition.
At around this time I received a tip that the company my neurologist worked for was going to be closing after some sort of scandal. To this day I think they are still open, but it was enough for me to jump ship. I had been so unhappy there for so long that, looking back, I'm surprised I stayed around as long as I did. S has a coworker with MS and she highly recommended the clinic she went to. So I called and made an appointment and officially had all of my records transferred.
The physician I see now is really, really nice but, upon reviewing my prior MRI, he proceeded to give me an 'are you crazy?' lecture. He basically told me that patients in my condition, without intervention, will not be walking in 10 years. I told him my concern with the drugs. He provided reassurance and convinced me to start the testing process for an IV drug called Tysabri.
Now one of my biggest complaints about having MS isn't the disease itself, but the fact that every single time I start a new therapy, there is something wrong with me that makes the drug not a great match for me. With interferon drugs, I felt like I had the flu all of the time. With Copaxone I felt fine, but had horrible injection site reactions (I have not a lot of subcutaneous tissue which is mandatory for this drug.) So I shouldn't have been surprised when I ended up testing positive for a virus when, in conjunction with Tysabri, puts me at a great risk to develop a fatal brain infection. In fact, not only did I test positive, I tested high positive. And not only that, my risk was even higher because I'm considered low-weight.
Great.
My doctor and PA assured me that this was still my best option and the agreement was that I would only continue with this therapy for a year. The titer levels wouldn't be high enough to put me at real risk and, as soon as I stop, the levels go down. In other words, this drug doesn't have a memory. In other words, it looks like I'll be taking medical vacations every other year for the rest of my life. That is, unless something better comes out or, even better, a cure is found!
I started the treatment late June and within a week became sicker than I have been in a really, really long time. What started out as a simple cold spread like crazy and put me at risk for pneumonia. I was like, 'what the heck?' Tysabri lowers my immune system and I was suddenly looking at a long road of constant illness. There was no way I wanted that! In the weeks that followed I also started losing a lot of weight for no apparent reason. I'm still not sure why it happened, but I can tell you one thing: gaining a lot of weight isn't ideal, but losing a lot of weight isn't ideal either. I felt awful. After several rounds of antibiotics I finally got my strength back. And luckily, that was the only time I have been really, really sick. So far I have remained relatively healthy. I even survived a round of a GI virus that hit our home a few weeks ago.
8 treatments later and, call me weird, I absolutely look forward to my infusion days. It is so quiet and relaxing. It's kind of nice to have people take care of me. And the best part, of course, is that I feel fantastic. I didn't know until recently how bad I was doing last May when I had my first appointment at the new clinic. I failed all of my tests miserably. I never fail. It was depressing. I remember feeling so dizzy and tired all of the time. And now it's all gone! Though the risks are there, I am so grateful that this medicine has worked so well for me. I am grateful that, through financial assistance provided by the manufacturer, I don't have to pay a dime for it! (No one does--I still don't know how they can afford to do this, but it is a blessing for a lot of people who are used to paying a lot in medical expenses each year.)
So I'm moving forward in 2015 feeling more like my old self--and so quickly. It may not be an absolute cure, but I think Tysabri is pretty close. And I am SO grateful that I moved to the clinic I did. The whole year was a change for the better!
Saturday, January 24, 2015
Thursday, January 22, 2015
Lessons Learned from 2014: Turning Lemons into Lemonade
The beginning of this story actually starts at the end of 2013. You may or may not remember me telling you that S was studying for a promotional test. I have never seen anyone as prepared to go take a test in my life.
Which is why I, along with his family, friends, and almost the whole fire department was shocked when he didn't pass.
Here's what happened in a nutshell:
This particular promotional test is split into to parts: skills and written. There were, I believe, 3 or 4 skills that he needed to pass. He aced almost every single portion of the skills and written tests. Then there was what was called the ESO. The ESO is the way that firefighters/paramedics do their 'paperwork' on medical calls. This portion of the test was subjective to how the person who wrote it wanted it graded. Meaning that S could have seen the situation one way but if the author saw it another, he was docked points. The worst part is that there was no manual or course on how to study for it, so no one was able to study for it.
S along with two of his coworkers failed this portion. It didn't matter that S was the top scorer in every other area that day--failing one portion meant that he failed the entire test.
I don't know if you can even imagine how devastating this was to S and our family at that time. I was so angry. (And I wasn't the only one!) Never had I seen anyone so prepared or so qualified for a promotion.
S was angry, too, at first. He decided to submit the legal paperwork--arguing that the test wasn't fair. If anyone had a hard time seeing that there was a problem with this process, then they should just look at him as a worthy candidate not passing. The two other coworkers also went forward with the process of challenging the fire department.
Then something changed in S. I think he realized that arguing would only make more problems. If anything would change, it would likely affect his coworkers who did pass (one of whom is a very good friend of his.) So instead, he withdrew his challenge and accepted that he just wouldn't get the promotion this time around. I feel this was extremely hard for him to admit. In doing so, he likely wouldn't be qualified in time to test for Engineer, which is his career goal.
So rather than just sulk in his misery (which, honestly, no one could blame him if he did!) he decided to look at the testing process and find a way to improve it. Remember me telling you that there was no way for candidates to study for the ESO portion? S decided that this needed to change. With permission, he started constructing an ESO manual. I don't remember how long it took him, but it was at least half of last year. I still remember the look of pride on his face when he finished.
Something else was happening, too. All of the chiefs and other people 'in charge' were starting to take notice. The two that fought the test ended up losing and causing some bad feelings in the department. Then there was S who was quietly going to work to improve something in the only way he knew how.
It was at this point I started to see what a blessing it had been that he didn't pass. I have told him so many times that he's probably sick hearing it: him not passing and his reaction to the situation put him in a better light professionally than if he had passed the first time around. It speaks volumes to his character and I know that when it comes time for the big promotions that count, people are really going to remember him now.
So of course the promotional test became available again in December 2014. He spent a lot of time studying again, but his attitude was different. Before he was aiming for the #1 spot--this time he just wanted to pass! We were a bundle of nerves for a couple of months. A week before Christmas he went to take his test. I was on edge all morning but then the texts started rolling in saying that he had passed certain skills that we'd worried about. He came home a completely different person than he'd been the year prior. About 5 o'clock that evening he received an email confirming that, not only had he passed, he scored the highest score. And by highest score, I mean it was near perfect! It was such a great end to what had been a hard lesson.
I was one happy wife. If I have to be honest, though, I'm still more proud of how he handled himself after not passing than I was when he scored first place. I sure love that man!
Tuesday, January 20, 2015
Lessons learned from 2014: #myotherjob
Ideally I would have been posting this next series of posts at the end of December, but as I previously mentioned, I actually had the holiday off so I am not getting to it until now.
If you follow me on Instagram, then you know that every time I post a picture from my job in transfusion, I use the label #myotherjob. I have now been at my current full time job as stay-at-home-mommy for just over a year. And it has absolutely changed me. Here are some things I have learned from my new job.
1. Patience is a virtue...which I don't have
But I am striving to get there, I promise!
I think there is nothing more frustrating in the world than trying to convince a 2 year old that it is time to get in bed for either his nap or for the night. Especially when I am on the verge of falling asleep there on the spot. I cannot tell you how many times I use the "5...4...3..." tactic on Boy each day (at least it works!) I just read a great article the other day which, yet again, reminded me that their behavior is normal. And that I just need to take a chill pill.
I think I lose my patience, on average, more with Bean. I guess I figure that she's older and she knows better. This article I'm referring to (sorry, I didn't think to save the link) reminded me just how often each day school-aged kids have to conform to routine and it's really good to just let them chill for awhile after school. I was especially diligent to give Bean her space after school today and the evening went much, much better.
2. Money Matters
I know, I know. Talking about money is taboo. But I feel like it is such a huge part of my story this year.
S and I started off super poor when we first got married. I am grateful every single day for this. We had nowhere to go but up. I graduated and started working and was essentially the bread-winner for our family for some time. S went through school, got hired on with the fire department, and eventually took over as bread-winner. The whole transition was so seamless that I hardly noticed it. You can imagine, though, that my decision to leave work would leave a huge financial hole in our lives.
The concept freaked me out, at first. But the numbers were working somehow (I still don't know how, to be honest.) I couldn't believe it as months were going by and we were noticing very little difference to our lifestyles. Of course there were some things that we wouldn't be able to do (i.e. extravagant trips to Central America...) but at the end of the year I really didn't feel much different than I had the year before.
I think our financial success has come from four things: (a) we were so smart to buy a home that we could afford on a single income. Trust me, there were some beautiful homes that we could have afforded when we were looking, but I am so grateful that S stuck to his guns. (b) I had to give up shopping at Harmon's. I love Harmon's. This was sad at first. But as I realized Fall 2013 that our lives would be changing in the next few months, I started shopping at our local Smiths and was astounded (and a little disgusted) at how much I'd been overpaying for things at Harmon's. I have also learned to love to cut out coupons. And I got a Target Red Card. Little steps make huge differences. (c) we kept saving. Now one of the things that helped when I quit is that we had already been stocking so much of my paycheck each month into savings. We had such great momentum that we decided to keep paying into our retirement and savings accounts. It's still a big hit each spring, but we also decided to keep paying our financial adviser. I don't feel like we can afford not to. And (d) charitable contributions. I felt almost apologetic at first when my tithing checks were suddenly very, very small. It was a simple, but important, lesson to learn that Heavenly Father really doesn't care how much money I give. On months that we needed extra blessings, I paid extra fast offerings. I have such a testimony of paying tithing and fast offerings. I think S and I have both learned in our marriage that the more generous we are, the more temporal and spiritual blessing we receive when we are in need.
3. I need to take care of me.
This is so much easier said than done.
About June last year I literally almost had a breakdown. I don't know what the events were leading up to it. I know S was working a lot and I was home with the kids for days on end with no end in sight. S had a very real conversation with me, saying he could be home more if he needed to. I told him that I felt like I just needed to know that there was an adult around that would have my back! Our kids are great and everything, but most of our conversations at home revolve around fictitious Disney characters.
I've tried to do better at taking time for myself. I am trying to make the Temple more of a regular part of my life. That helps a lot!! I also try not to feel guilty when I leave the kids with someone else, even if it's just S, while I go run errands or go out with friends. I think I mentioned this before, too, but it is vital that I wake up early enough to have quiet time. I can really tell a difference when I don't.
4. I LOVE my children (and my husband ;) )
My life was always such a blur while I was working. Looking back on it, I don't know how I remained a full-time working mom for as long as I did. I am still so busy that I don't see how I ever made time to work 70 hour weeks.
I've really had to dig deep (refer to items 1 and 3 again, if needed) some days just to make it to bedtime. I've also realized that I have anger issues. I don't think I've ever yelled in my life as much as I have this year. But I realize that I am not infallible and that I'm also, probably, pretty normal.
That said, I think I've been able to realize just how awesome my kids are. When I was working full time, I don't think I allowed myself the time to just sit down and enjoy them. I love Bean's artistic creativity. I love Boy's charm. There are so many things they do and say that bring so much joy to my life. Being able to be home with them is truly an honor.
And (refer to item 3) more often than not, the adult that has my back is my dear husband S. I thought that by being home all of the time we would be able to go out all of the time, but this last year I think we were as busy as we were while I was working full time. This makes our evenings home together that much more important. We often just hang out at home in the evening after the kids go to bed--these are some of my best memories from the past year.
Of the past 10 years, I feel like this past year has gone faster than any of them. I can't believe that by the end of 2015 I will have celebrated a 13th wedding anniversary, and I will have a 3- and 6-year old. I look forward to seeing what this family of mine teaches me this year!
If you follow me on Instagram, then you know that every time I post a picture from my job in transfusion, I use the label #myotherjob. I have now been at my current full time job as stay-at-home-mommy for just over a year. And it has absolutely changed me. Here are some things I have learned from my new job.
1. Patience is a virtue...which I don't have
But I am striving to get there, I promise!
I think there is nothing more frustrating in the world than trying to convince a 2 year old that it is time to get in bed for either his nap or for the night. Especially when I am on the verge of falling asleep there on the spot. I cannot tell you how many times I use the "5...4...3..." tactic on Boy each day (at least it works!) I just read a great article the other day which, yet again, reminded me that their behavior is normal. And that I just need to take a chill pill.
I think I lose my patience, on average, more with Bean. I guess I figure that she's older and she knows better. This article I'm referring to (sorry, I didn't think to save the link) reminded me just how often each day school-aged kids have to conform to routine and it's really good to just let them chill for awhile after school. I was especially diligent to give Bean her space after school today and the evening went much, much better.
2. Money Matters
I know, I know. Talking about money is taboo. But I feel like it is such a huge part of my story this year.
S and I started off super poor when we first got married. I am grateful every single day for this. We had nowhere to go but up. I graduated and started working and was essentially the bread-winner for our family for some time. S went through school, got hired on with the fire department, and eventually took over as bread-winner. The whole transition was so seamless that I hardly noticed it. You can imagine, though, that my decision to leave work would leave a huge financial hole in our lives.
The concept freaked me out, at first. But the numbers were working somehow (I still don't know how, to be honest.) I couldn't believe it as months were going by and we were noticing very little difference to our lifestyles. Of course there were some things that we wouldn't be able to do (i.e. extravagant trips to Central America...) but at the end of the year I really didn't feel much different than I had the year before.
I think our financial success has come from four things: (a) we were so smart to buy a home that we could afford on a single income. Trust me, there were some beautiful homes that we could have afforded when we were looking, but I am so grateful that S stuck to his guns. (b) I had to give up shopping at Harmon's. I love Harmon's. This was sad at first. But as I realized Fall 2013 that our lives would be changing in the next few months, I started shopping at our local Smiths and was astounded (and a little disgusted) at how much I'd been overpaying for things at Harmon's. I have also learned to love to cut out coupons. And I got a Target Red Card. Little steps make huge differences. (c) we kept saving. Now one of the things that helped when I quit is that we had already been stocking so much of my paycheck each month into savings. We had such great momentum that we decided to keep paying into our retirement and savings accounts. It's still a big hit each spring, but we also decided to keep paying our financial adviser. I don't feel like we can afford not to. And (d) charitable contributions. I felt almost apologetic at first when my tithing checks were suddenly very, very small. It was a simple, but important, lesson to learn that Heavenly Father really doesn't care how much money I give. On months that we needed extra blessings, I paid extra fast offerings. I have such a testimony of paying tithing and fast offerings. I think S and I have both learned in our marriage that the more generous we are, the more temporal and spiritual blessing we receive when we are in need.
3. I need to take care of me.
This is so much easier said than done.
About June last year I literally almost had a breakdown. I don't know what the events were leading up to it. I know S was working a lot and I was home with the kids for days on end with no end in sight. S had a very real conversation with me, saying he could be home more if he needed to. I told him that I felt like I just needed to know that there was an adult around that would have my back! Our kids are great and everything, but most of our conversations at home revolve around fictitious Disney characters.
I've tried to do better at taking time for myself. I am trying to make the Temple more of a regular part of my life. That helps a lot!! I also try not to feel guilty when I leave the kids with someone else, even if it's just S, while I go run errands or go out with friends. I think I mentioned this before, too, but it is vital that I wake up early enough to have quiet time. I can really tell a difference when I don't.
4. I LOVE my children (and my husband ;) )
My life was always such a blur while I was working. Looking back on it, I don't know how I remained a full-time working mom for as long as I did. I am still so busy that I don't see how I ever made time to work 70 hour weeks.
I've really had to dig deep (refer to items 1 and 3 again, if needed) some days just to make it to bedtime. I've also realized that I have anger issues. I don't think I've ever yelled in my life as much as I have this year. But I realize that I am not infallible and that I'm also, probably, pretty normal.
That said, I think I've been able to realize just how awesome my kids are. When I was working full time, I don't think I allowed myself the time to just sit down and enjoy them. I love Bean's artistic creativity. I love Boy's charm. There are so many things they do and say that bring so much joy to my life. Being able to be home with them is truly an honor.
And (refer to item 3) more often than not, the adult that has my back is my dear husband S. I thought that by being home all of the time we would be able to go out all of the time, but this last year I think we were as busy as we were while I was working full time. This makes our evenings home together that much more important. We often just hang out at home in the evening after the kids go to bed--these are some of my best memories from the past year.
Of the past 10 years, I feel like this past year has gone faster than any of them. I can't believe that by the end of 2015 I will have celebrated a 13th wedding anniversary, and I will have a 3- and 6-year old. I look forward to seeing what this family of mine teaches me this year!
Wednesday, January 7, 2015
Random Superlatives of 2014
How was your New Years? Mine was great! Especially considering that I didn't have to work it for the first time in several years! Bean spent the night at Grandma's with her cousins. S and I celebrated a bit with his family and then brought a sleepy Boy home and had a quiet celebration (we actually missed the countdown: S was making nachos and I was trying to find a decent countdown on television--I miss Dick Clark...) Anyway, it still beats the last several New Years holidays! I spent New Years Eve cleaning up Christmas which, I think I have mentioned before, is highly cathartic for me. S took the kids with their cousins to the aquarium. I stayed home and cleaned in my pajamas and bawled my eyes out unapologetically when Mike Delfino was killed off of my most recent binge watching show Desperate Housewives.
Anyway.
In recent years past I have spent the quiet holiday reflecting on the past year and making goals for the next year. I am still going to do that, just a little later than normal! So on to my superlatives...
Favorite new restaurant: Guras Spice House. I eat a lot of Indian food and I would have to say this is my new favorite. And I'm lucky they are local. One of the reasons I love where I live is because it is so far from anything, but I would recommend this place (and the drive) to anyone.
Best book read: This was a year of series reading for me. I finished Harry Potter. I started reading alll of my Boxcar Children books again (and there are a lot.) I started a new suspense/thriller series about Jack Reacher. But my favorite series was probably "The Girl with the Dragon Tattoo" trilogy. These books are rather graphic, which is unusual for me to stick with something like that, but the story is so good and the good guys prevail and the bad guys definitely get what's coming to them.
Favorite vacation: We went camping and cabin-ing a lot this year. There was Disneyland, of course. And don't forget the week I ditched my family to go to San Fran with my friends. But the thing that sticks out in my mind the most was the day that S and I went up to our family cabin in the dead of winter and then went tubing at Soldier Hollow. Sure it wasn't technically a vacation, but it sure felt like one!
Favorite date: see above
Artist that I'm afraid to admit I like as much as I do: Ariana Grande. I blame this partially on her brother Frankie's appearance on Big Brother.
Best new-to-me hairstyle: the braid. Thank you Elsa. I was mad when I cut my hair just 2 inches last summer and I couldn't do my braid anymore. Thankfully my hair grows fast.
Cutest imitation of an animal: Monkey by Boy. Rooster by Boy is a close second. Also, just for your information he believes that both Dinosaurs and Crocodiles say 'Chomp chomp.' I'm not about to correct him.
Most heart-breaking mommy moment: Sending Bean off to school (and knowing she was having a really hard time saying goodbye.)
Most triumphant mommy moment: A three way tie between Bean telling me she didn't need me to walk her to the playground anymore, Bean telling me that she wanted to carpool to school with her friends, and Bean telling me she no longer wanted me to wait for her at the bus stop. I could also categorize these under "Most heart-breaking mommy moment."
Craftiest thing I did: it was not a very crafty year for me, but I did make this Easter egg wreath that I absolutely loved.
Movie I have memorized, but have only actually sat down and watched twice: Frozen
Favorite song: I wasn't sure what I was going to do this year because I really didn't have any favorites for most of the year, but then just in the last few months I've discovered two. Cool Kids by Echo Smith (mostly because my kids love it and it's really, really cute to hear Boy try to sing along.) And Ghost by Ella Henderson (though Bean can't understand why I listen to it now because obviously it's a Halloween song.)
Favorite New App: HAS to be Project Life by Becky Higgins. This app is seriously going to change how I scrapbook. While I downloaded the app last November, I just started using it for the new year. My goal is to 'scrapbook' all of my photos from the previous week each Sunday. This week it took me a whopping 6 minutes and the pages look adorable. I am So. Excited.
Anyway.
In recent years past I have spent the quiet holiday reflecting on the past year and making goals for the next year. I am still going to do that, just a little later than normal! So on to my superlatives...
Favorite new restaurant: Guras Spice House. I eat a lot of Indian food and I would have to say this is my new favorite. And I'm lucky they are local. One of the reasons I love where I live is because it is so far from anything, but I would recommend this place (and the drive) to anyone.
Best book read: This was a year of series reading for me. I finished Harry Potter. I started reading alll of my Boxcar Children books again (and there are a lot.) I started a new suspense/thriller series about Jack Reacher. But my favorite series was probably "The Girl with the Dragon Tattoo" trilogy. These books are rather graphic, which is unusual for me to stick with something like that, but the story is so good and the good guys prevail and the bad guys definitely get what's coming to them.
Favorite vacation: We went camping and cabin-ing a lot this year. There was Disneyland, of course. And don't forget the week I ditched my family to go to San Fran with my friends. But the thing that sticks out in my mind the most was the day that S and I went up to our family cabin in the dead of winter and then went tubing at Soldier Hollow. Sure it wasn't technically a vacation, but it sure felt like one!
Favorite date: see above
Artist that I'm afraid to admit I like as much as I do: Ariana Grande. I blame this partially on her brother Frankie's appearance on Big Brother.
Best new-to-me hairstyle: the braid. Thank you Elsa. I was mad when I cut my hair just 2 inches last summer and I couldn't do my braid anymore. Thankfully my hair grows fast.
Cutest imitation of an animal: Monkey by Boy. Rooster by Boy is a close second. Also, just for your information he believes that both Dinosaurs and Crocodiles say 'Chomp chomp.' I'm not about to correct him.
Most heart-breaking mommy moment: Sending Bean off to school (and knowing she was having a really hard time saying goodbye.)
Most triumphant mommy moment: A three way tie between Bean telling me she didn't need me to walk her to the playground anymore, Bean telling me that she wanted to carpool to school with her friends, and Bean telling me she no longer wanted me to wait for her at the bus stop. I could also categorize these under "Most heart-breaking mommy moment."
Craftiest thing I did: it was not a very crafty year for me, but I did make this Easter egg wreath that I absolutely loved.
Movie I have memorized, but have only actually sat down and watched twice: Frozen
Favorite song: I wasn't sure what I was going to do this year because I really didn't have any favorites for most of the year, but then just in the last few months I've discovered two. Cool Kids by Echo Smith (mostly because my kids love it and it's really, really cute to hear Boy try to sing along.) And Ghost by Ella Henderson (though Bean can't understand why I listen to it now because obviously it's a Halloween song.)
Favorite New App: HAS to be Project Life by Becky Higgins. This app is seriously going to change how I scrapbook. While I downloaded the app last November, I just started using it for the new year. My goal is to 'scrapbook' all of my photos from the previous week each Sunday. This week it took me a whopping 6 minutes and the pages look adorable. I am So. Excited.
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