My 1st Remicade Infusion

Hopefully you aren’t sick of my posts or me talking about my disease on this little blog of mine, because well, I have the disease, it affects my daily life, so…I will talk about it! Unfortunately, it is a big deal. Maybe it will be helpful for someone out there ;) Anyways, so I decided on Remicade (infusion) vs. shots (Enbrel or Humira). The infusions are less frequent (every 6-8 weeks- not sure how many weeks apart mine are actually). If I did shots, I would do them every 2 weeks. I probably, over time, would get brave and the shots wouldn’t be a big deal, but what if, they really sucked, and every 2 weeks I was begging Kevin to give me one or my parents (if he was out of town)…or random nurses that I know here. Random, but I actually know quite a few nurses here! I didn’t want to dread that day and have to deal with disposing of the medical waste/sharps, traveling with the shots and keeping them refrigerated, etc. So I decided to go for it! Kevin helped me decide to do so. I was so nervous to just decide to do it. I decided to take advantage of modern medicine since it is out there to help people and it is the only type of medicine that could prevent fusing of my spine (no brainer there). If I get lymphoma cancer or a serious disease from it, well, that really sucks, but I guess I am taking my chances…. So I was told to drink a lot of water the day before to help my veins be lovely to poke for the meds to run in…I think I did ok. Anyone have a hard time just DRINKING? I would much rather eat. I struggle with staying hydrated haha. Side note- I could NEVER be an alcoholic! By the way, I have never tried alcohol haha… Anyways, I went to bed late, also a problem I have…I have a hard time going to bed before midnight which is like 4.5 hours after Ryder has been asleep, lol. So I go to bed and then in one of my dreams was I was at my rheumatology office, was SO delusional, and couldn’t find the infusion room! I remember being lost in the office and out of it. Thank goodness I woke up and I wasn’t all delusional in there. My infusion was at 8:30 am and was supposed to go 20 minutes early, so basically, I woke up dang early. The infusion takes 2 and a half hours so Kevin took Ryder to work because I couldn’t take him there. Ryder’s first tooth literally popped up 2 days prior to this and he had a little cold so he wasn’t in the best mood. I had a feeling he may be crazier than normal for Kevin and he was. The photo above is Ryder chilling in a chair in Kevin’s office! I love my cute boy! I had my first infusion, Tuesday, May 14th, 2013. They say the meds could start working the following day or a couple of months. That is a big variance! Cyndi (who does the infusions and goes to my church) got my meds ready and gave me my IV. She was explaining how there is a thing that goes into my arm that is kind of plastic-y (sorry don’t know the names of IV parts lol) so when you move your arm the needle won’t poke you or something. Basically, I was SO nervous I was getting lightheaded. < It reminded me of when I passed out at a post surgery appointment at an ENT (Ear, Nose, Throat dr.) appointment. Awhile ago, I had sinus surgery and they also fixed a deviated septum. I was at a check up and he was putting something up my nose like I swear, back into my brain haha and it made me feel so weird I passed out. >  Now back to the infusion, basically, I’m glad I didn’t pass out. I’ve never passed out giving blood or getting an IV but it was just weirding me out. I was just so nervous to get these meds because they are hardcore and the strongest drugs for my disease. Basically, after Remicade and the shots, I don’t know what else there is out there. Hopefully LOTS of options in clinical trials?! Anyways, I brought my laptop (in case I wanted to blog, shop, etc.) and an iPad with Kevin’s Bose headphones. I also brought thank you notes and random things to do. Instead, I sat there asking Cyndi lots of questions and worrying about the side affects haha. Also, I brought a Naked drink because they are yummy, oh and chocolate too :) I ended up getting calm at the end and watching a little of What to Expect When You’re Expecting and then it was all over! Basically the meds just dripped into my body and made my arm cold for a couple of hours. Also, you are allowed to go to the bathroom if you wheel your tower of meds into the restroom with you ha! All in all, it wasn’t too bad, but at the end, I started feeling like I was getting a headache but think it may have been mental haha. Afterwards, Kevin, Ryder, and I went out to lunch at Subway. I told him all about it and he said, “Let’s do lunch or dinner after every infusion to make it a good day!” I think that is a splendid idea. It sucks to have a disease and we can make the day special haha. Then I said, “And I will go shopping!!!'” Just kidding, maybe. That would be an awesome post-infusion tradition! So far, I haven’t noticed anything crazy with the drugs but a positive is that I stopped taking Vicadin 2 evenings ago. I didn’t take the pill and didn’t wake up in the middle of the night from pain! It is hard to say if it is the Remicade working (which would be pretty early) or if my flare-up is going down for a bit. I swear, every day it is something new. Last weekend and earlier this week it hurt to breathe (in the front of the rib cage) and my knees got really bad a couple of weeks ago. I think my knees have gradually gotten better and luckily I am breathing better. Now, my lower back/SI joints are achy which is annoying but definitely better than freaking limping. I am ready to hit the gym hard and not ‘take it easy’! So frustrating. Anyways, I get my 2nd infusion not this week but the following. Hopefully by then, the drugs will be working in full effect! Crossing my fingers!

Also- if you are wondering why I Instagram random IV photos or health ones, it isn’t to gross you out. There is a whole arthritis world out there on Instagram lol. Basically, if I hashtag #Remicade or #Enbrel or #Humira I get a lot of good comments and feedback from people who are on it! I’ve also hashtagged my disease #AnkylosingSpondylitis and found people who have it as well. However, there aren’t too many since the disease is pretty rare. I have gotten good info by doing that so just in case you are wondering :)

Mother’s Day 2013

First of all, hope all of you mamas had a good Mother’s Day, especially my mom, mother-in-law, sisters-in-laws, and friends!

My mom, NiKol, & I after I got married

Kevin & Kathy

My first Mother’s Day…

This was my first Mother’s Day as a mommy! Well…last year I was one, but Ryder was in the womb, hehe. Growing a human (little Ryder), being pregnant, giving birth, and adjusting to life with a baby and all of what has happened with my disease has been one of the hardest things I have ever done. It has been hard but SO worth it. I am so thankful to be a mom and to our amazing son, Ryder. I feel like I have got the mom thing down pretty good for the most part lol. It is still harder to get things done, keep things clean, and stay on top of everything compared to before but it is ok. That is something I struggle with daily! I like things to be orderly, organized, and in control…key word, in control haha. You can’t really control another human being…lol. But having Ryder in our life and little family has been awesome! He brings so much joy to our lives. He is hysterical, sweet, precious, and I am just obsessed with him…as you can tell from my blog since I post a gazillion photos of him every blog post haha! We just LOVE him! So glad he made me a mom. Anyways, a little about the day…Kevin, Ryder, and I went to church and it was great. Ryder slept during 2nd and 3rd hour in his car seat like a champ. He has been pooped out the past few days because he is teething and has a little cold. Anyways, all of the women attended Relief Society which was fun. I remember a year ago, I was in nursery, and I hadn’t been to Relief Society for months and months and was able to on Mother’s Day since the men fill in for the women who have callings 3rd hour. It was SO weird to go to Relief Society I thought! Now I am so lucky I can go each week…depending on Ryder. After church, I watched Ryder while Kevin took a nap and then we ate chicken sandwich croissants with my family for a late lunch. Then I took a little nap while Kevin watched Ryder. My friend Amanda Johnson brought over some Doterra oil for my back (Ankylosing Spondylitis disease, whatever my immune system is deciding to attack at that time) so I will try that soon. That was so nice of her. For Mother’s Day, Kevin and Ryder got me that pink suitcase (here) so I am super excited to use that on our next trip, my in-laws got me an awesome CD, and my parents got me a manicure that I got the day prior. Not a bad day ;) My dad cooked an amazing German dinner - dumplings, goulash, cauliflower, rolls, berries! It was bomb. I love German food, so much. Oh, and my brother, Patrick came home from Boulder to celebrate this day so that was nice. Then while listening to my new CD, Kevin, Hunter, my dad, and I played a game of Rummikub. Then Kevin and Hunter played Jenga and some other game while I tried to keep Ryder happy. All in all, it was a pretty good day!

Hunter’s 11th Birthday Weekend

Hunter turned 11 years old on Thursday, May 9th, 2013! While he was off at school, I went to workout. I had a feeling I wouldn’t really be able to do much at all because of my knees (AS disease) but I was stubborn. I walked into a Step class and walked out before it started. I knew it would make them worse. I then tried doing a mile on a bunch of cardio machines and my knees felt horrible so I left after 4 miles. So frustrating! Then I hurried home and got ready to meet my mom, dad, Zach, and Hunter at Larkburger for lunch.

On the way, it was pouring rain, then it started raining harder, then all of a sudden I realized cars were driving through slush, then I was like, “Is it snowing?” It was the most confusing thing ever. I then realized that it was hailing! So that was an interesting drive down College ha.

Anyone been to Larkburger? What do you think? My first time I was weirded out because they have fancy fries that stink horribly. This was my second time and it was much better. My brothers love this place.

On the way home, I printed the ward bulletins for the upcoming Sunday. Afterwards, Hunter opened some presents and here is a really bad photo of us with bad lighting lol.

Hunter wanted to eat at Mount Fuji for dinner. At this restaurant you can sit on the floor in some booths so we did that. Ryder sat right next to Kevin and I on the floor ha! It is a fun place to eat Japanese food! I got a beef, vegetable, rice bowl. Kevin got a bunch of sushi!

Also- how does one get a good photo with a crazy active baby who wants to move around so much? Seriously, it is getting harder to take photos of him because most of them are now turning out SO blurry!

Afterwards, my aunt NaNet and her kids came over and we all had angel food cake! Here is the birthday boy and Ryder! Also, I wish I had better photos from this day! I feel like the lighting is so weird in all of them!

On Friday, the 10th, my knees were feeling a little better so I went to my friend, Mindy’s yoga class! It was amazing! I love going to her classes. Also, Ryder tried bananas for a little breakfast snack and we both learned they are super slippery haha. How can I expect him to pick up little banana chunks when I can’t pick them up myself?

Hunter’s birthday kind of extended into Friday evening because he had a birthday get together with some yo-yo friends. Ryder watched them yo-yoing and enjoyed his first graham cracker! He ate a little more than 1 graham cracker and it was amazing but…BOY did it make a mess!

We had pizza and Mary’s Mountain Cookies for dessert. Seriously, my family is ADDICTED to Mary’s Mountain Cookies!!! They are heavenly and probably over 1000 calories per cookie. I should probably look into how many calories one is but I don’t even want to know. Meanwhile, Kevin was working on the house with some church friends so I brought him some food over!

We moved the high chair so Ryder could watch the yo-yoers! Also, I think a graham cracker chunk is falling out of his mouth ha!

I would say that Hunter had a good birthday! :D

Saturday, the 11th, Kevin worked on house stuff with friends and Ryder and I hit up the gym. I went to another yoga class and it wasn’t as good. I was having costochondritis (inflammation of the ribs) so it was hurting to breathe. It is SO annoying. But it was good I worked out anyway, I think ha.

Oh, and Ryder’s new thing is sleeping on his tummy?! I know this isn’t crazy at all to most people but up unti this point he really hasn’t slept like this! I think it is so cute. But sleeping on your back is better (Back is best- or whatever) so, I roll him sometimes lol.

My friend Emily Vail came in town so we went with my mom to get manicures. I actually had a really bad experience. An old lady did my nails and it was the worst manicure I had ever gotten, like only half of my nails were painted. Let me explain. Look at one of your finger nails. Now paint half. Welp, that is what happened on a lot of them. She asked at the end, if it was good and I am not usually one to complain…AT ALL. But, I was going to be pissed and not want to pay if they looked crappy, I mean, hey, I could have painted them myself like that! So I said, “Can you paint the rest of the nails?” She did and it kept getting worse and worse. She kept asking “Good?” and trying to paint a clear coat at the end and I told her “I just want my nails to look the same.” By then, each nail looked different because she put different layers on each nail and there were streaks. Then another employee noticed and told her to take it all off and have me wash my hands. Then a different employee finished my nails and they looked much better. Maybe she was in training? Oh my word, it was so bad lol.

Emily came over and hung out a little bit before she had to go and Ryder was a big fan of her.

Hope you had a great weekend and Mother’s Day!!!

Souvenirs, FHE Night, + a Rheumatology Appointment

^^ On Sunday, my dad and Kevin returned from Bangladesh and Dubai…(last week’s post here). While they were away, Kevin would text me at their hotel at odd hours due to the time change, being practically at the opposite side of the world! Got to love free wifi so we were able to text without outrageous phone bills :)  Also, we Face timed a few times but the connection wasn’t that great. Anyways, he once was like, “What do you want from Bangladesh or Dubai?” I was like, “I don’t know…a cool shirt or clothes or something?” Typical me…clothes :) Well, I thought he would maybe…get me a t-shirt and then when they got back it felt like Christmas lol. My dad and Kevin had too much fun shopping - plus apparently Bangladesh has a lot of cheap stuff - so they had to buy an extra suitcase to bring everything back! My ‘Big Blue’ suitcase died right after Kevin and I got married in 2008 at the Kansas City airport, and I’ve been using Kevin’s old missionary suitcases ever since! I called my suitcase ‘Big Blue’ because 1. It was bright blue and 2. It was just huge. I could fit so much stuff in it and that is what ruined it…I packed it so full, it broke haha.  I’m so cheap, I didn’t want to buy a new suitcase until I absolutely had to! Lucky for me, they got me a pink one, with spinner wheels, so I’ve got a NEW suitcase! Seriously, so excited. I want to visit Dubai now. I know I’ve talked about Dubai before but it sounds awesome and I want to visit.

* Loot above: authentic handmade shoes from Dubai, dried fruit (yummy dried strawberries in the mix), Milk Chocolate Elephant Covered Macadamia Nuts from Japan where they had a layover, postcards from Dubai that Kevin wants to hoard and not mail lol, pink suitcase, caramel chocolate, vase thing, Dubai playing cards, colorful bracelet, gold cuff bracelet, wallet, camel handbag, vanilla coconut macaroons (maybe my first time trying macaroons?), mango dried fruit, turquoise necklace, and green and red shirts from Bangladesh).

Um yeah, like more than I get for Christmas hahaha. The suitcase is for Mother’s Day…so fun!

^^ Like every week, I feel like I go to Target. Good thing I finally got a Red card. Took me long enough but hey saving 5% is better than nothing, especially if you have to buy stuff there anyways! Now I am always telling people to get Red cards haha. Anyways, I came from working out and these past couple of weeks have been BAD with my knees. I think it is arthritis from my disease. So…I’m always driving to the gym thinking, I bet this will make them worse, but I don’t know what to do to make them better…and I am not going to sit at home for months or how long it takes for them to stop hurting so I am going to go and be in pain lol. So I lifted weights and then my knees felt crazy weird/painful walking through Target.

^^ Our friends Neal and Amanda Johnson invited us over for FHE along with Michael and Bekah Wilkey and their baby girl Carmen. We all ate tons of desserts and played a fun pirate-y board game. I have no clue what it is called haha. Also, they have 2 birds and in the photo above, Ryder is trying to pet one. So cute! Also, this is probably the only photo I got of Ryder and Carmen both looking at me, haha!

Tuesday, I went to Step Challenge. Knees hurt. Went to Group. Ryder is packing on the pounds! He currently weighs 19 lbs. 5 oz.! Ahh! Then I met my mom and dad at Charley’s out at Centerra. Charley’s has really good sub sandwiches. I also had some good times shopping at Ann Taylor Loft and Baby Gap. I got a final sale striped peplum top for $9 and some pink cropped skinnies for $17 (originally $60, on sale for $30, then 40% off sale) :) I LOVE getting good quality things for a deal haha. So I’m excited. I need to go through a bunch of my clothes and get rid of some. My summer attire is seriously lacking. A lot of the shirts are cotton-y, old, faded, and have shrunken over time. Out with the old, in with the new! Well, it is a good concept. Got to see what I can sell everything for :) But it is time to revamp my summer clothes! I would say my winter wardrobe is much better than my summer because I got Christmas and my Birthday in the winter. Then when summer rolls around, I don’t really spend much money on summer things. Anyways, as you can see I love clothes. I really do. Then Ryder and I got our Mazda’s emission checked so we could register our car’s plates and all that fun stuff for another year. Each year, I dread doing that.

^^ Ryder loves his baths, especially with his toys! Just not when they all float to the opposite end of the tub and he can’t reach ;) (photo below)

^^ Also, I caught Ryder sleeping on his side. He is usually a back sleeper so I thought it was cute.

Rheumatology Appointment: Wednesday rolled around and Kevin, Ryder, and I went to my second rheumatology appointment with Dr. Levine at my new rheumatology office. It was Kevin’s first time meeting him and I wanted Kevin to meet him if I was going to switch to him. My Diclofenac (75 mg., 2x daily, anti-inflammatory) and Vicadin (1/2 5-500 mg pill every night) didn’t seem to be doing much for me and I knew we were going to end up talking about biologics (Enbrel, Humira, Remicade). Plus my knees started hurting a couple of weeks ago and it was sometimes hurting to walk. I also had to stop working out as hard as I was and honestly, I felt like how I was working out was not as hard as I really wanted to be. I was definitely holding back because my body wasn’t able to work out harder :( I was doing tons of lunges and squats (and had started running after workouts as well) and had to stop when my knees got really bad. Anyways, that was a new symptom. After seeing 3 rheumatologists and them always bringing it up, I knew I probably would try biologics at some time in my life unless my disease randomly disappeared forever…ha…that would be lovely! So, I asked him a gazillion questions about it. There are SO many bad and scary side affects of these meds which is why it has taken me SO long and being in so much pain to finally decide to give them a try. He says I am low risk for a lot of the side affects or complications that the medicines can cause but it doesn’t mean the medicine is safe. They increase your risk for lymphoma (cancer), lower your ability to fight infections so you are more apt to get weird infectious diseases (TB – you have to get a TB test before you are allowed to start them which I already got and I got the OK to start the meds, random infections in dry climates (like AZ/so-Cal) and southern places like around Kansas City area (when he said that, I was like “Oh great, Kevin is from there!”), and is a immunosuppressant so you may get sick more often because your immune system is basically shot, and more. SOOO…we will see how it goes! He said Enbrel, Humira, and Remicade are all so similar and so I basically chose which medicine I wanted to try. Would I rather give myself a shot every 2 weeks or get a 2 hour infusion at my rheumatology office every 8 weeks? I chose the infusions. Hopefully that is the right choice! I would just rather not give myself shots. I could probably get over the fact that I am giving myself a shot but what if I couldn’t? Then every 2 weeks I would be begging Kevin or a family member or a random nurse I know to give me the shot lol. Plus, you got to keep them refrigerated and pack them for trips, etc. Anyways, I start my infusions on Tuesday morning! I hope that I get quick relief and no bad side affects!!! Wish me luck!

^^ After the appointment, I hung out at my casa with Katinka and Ryder, did a ton of laundry, and did a yoga/Pilates workout in the evening. Kevin worked on the house with a guy from church and they moved some electrical outlets. And Ryder had fun sharing his binky with Katinka and untying my shoes!

Next up: Hunter’s Birthday & Mother’s Day :)

Have a good Mother’s Day!

While Kevin is in Bangladesh & Dubai…

Ryder & I have a party. Jk. But we keep busy and have ourselves a good time.

See for yourself.

{Scenes from April 29 – May 5, 2013. Kevin & my dad were actually in Bangladesh & Dubai from April 28 – May 5 on a business trip.}

^^ Ryder’s favorite sleeping position. Always. He takes naps like this and sleeps all night like this. Sometimes when he is tired he will move his left arm over his face and hold his right hand in a little fist. He LOVES to sleep like this! It is never the other way around (like right arm over his face lol.) // My mom, Zach, Hunter, Ryder, and I all went to Fossil Creek Park and had a QDoba dinner picnic. It was a good time. Then we pushed Ryder in the swing for awhile and it was so much fun!

^^ The photo on the right cracks me up! He loves to scream randomly and here he is in action haha!

^^ One fine Tuesday, I worked out (Step Challenge) probably the hardest I had ever did in that class and literally didn’t know if I would be able to finish lol. I peaked too early! But it was good. Then I went to group and found out Ryder weighed exactly 19 lbs.! He is packing on the pounds! Then I went visit teaching and spent the rest of the day cleaning, doing laundry, blogging, etc. I decided I need to introduce Ryder to more ‘adult foods’ and not always the pureed stuff so here he is sucking on an orange! He loved it. Also, my mom brought home some Panda Express and I got jipped. There was NO fortune in my fortune cookie! I felt so ripped off haha. Like has that ever happened to you?

^^ Let me tell you about Ryder’s pj’s. He has been growing like a weed so a few weeks ago I bought him some bigger pj’s and found these taekwondo/karate (same thing, right ;)) monkey pj’s at Baby Gap. I immediately thought of my brother Hunter since he does taekwondo. He almost has his black belt actually. Anyways, they were on sale, in his size, and he needed them, so I got them! I had been wanting to get a photo of Hunter (after his practice) and Ryder together in their attire haha. Here they are! By the way, it is getting much harder to take a good photo of Ryder since he moves SO much and then all the photos are blurry! o_o

^^ MAY FIRST, guys, MAY 1st, we had a SNOW DAY! Not only did it just snow, but it snowed so much school was cancelled for my brothers! Craziness I tell you. PS. Do you see the blue heron? I decided to hang out at home since my knees were starting to bug me (dang arthritis and new symptom for my Ankylosing Spondylitis :( ) and do the elliptical instead of push myself too hard at the gym. A highlight of the day was talking to my Returned Missionary home girl Celestine Yeung!!! It was so good to catch up with her! Also, I attended a Relief Society Activity the next day but I did not take any photos! It was fun though.

^^ After my workout, Ryder and I went to Fossil Creek Park to hang out one last time (for awhile) with Ryder’s friend Everett and some other baby friends. Everett is currently in Denver having a bone marrow transplant! We wanted to get together one last time for awhile since he won’t be able to play or really leave the hospital for months. Everett had to leave early (so he is not in the picture) since the weather was colder than expected and he really CAN’T get sick before the transplant. He is such a trooper! Here Ryder is with Sophie & Valencia. In the left photo, it looks like Sophie & Ryder are doing some magic on the picnic food or something lol.

^^ Excuse my post workout nastiness in the left photo above but I think Ryder’s face is so cute! He had just woken from a nap so I was snuggling with him! // Ryder ready to go and playing with the seat belt!

^^ In the evening, my mom, Zach, Hunter, Ryder, and I went to find Zach a bowtie and order a corsage because he was going to Prom the next day. We stopped by Palmer Flowers, Men’s Warehouse, and Macy’s and as you can see Ryder had a lot of fun playing in front of the mirror. // I caught him kissing the baby in the mirror! // Ryder giving himself a high five. // Ryder focusing…that is his focusing face and I love it! Afterwards we all ate at the I Star of India and I got Chicken Tikka Masala. I LOVE INDIAN FOOD! Unfortunately, the Indian food here isn’t as good as The Bombay House in Provo, Utah :( Also, Ryder tried naan and was a fan! He got carried away with the rice and got a little bit too much under the booth…ha. Whoops!

^^ I redeemed my birthday present from Zach. Yes my birthday was in February! Our friend Mindy did my nails…nautical! I got the idea from Pinterest and searching images on Google. I tweaked the ideas I found online and ended up with the toesies above! I love it!

^^ My mom, Hunter, Ryder, & I went to take pictures of Zach and his prom date, Michelle at one of his friend’s houses! Ahhh I remember the prom days. They were such a big deal haha! This was Zach’s first prom and he had a good time! // Hunter and I noticed that Ryder’s first tooth was starting to come up so I kept trying to take pictures of it and it was basically impossible. I just get tons of pictures of him like the photo above on the right haha. On Saturday it seemed like there was kind of a slit in his bottom gums and then Sunday it felt harder and like there was a little sharp tooth…it is definitely happening!!!

^^ Ryder and I went to my parent’s ward and anxiously awaited for my dad and Kevin to return from Dubai! Not kidding. In the left photo above, Ryder was SERIOUSLY holding the hymn book all by himself! I had the left side of the book and he held the right! It was so funny! Strong kid! // Finally Kevin and dad made it home and we had a great day! They actually brought us a ton of souvenirs (more on that later) which was unexpected and fun. My dad, Hunter, Kevin, Ryder, and I went on a walk in the neighborhood. The sister missionaries in our ward came over to Kevin’s and our house and gave us a short message. Then we had a yummy curry dinner made by my dad. We all watched a sweet movie of Dubai and heard tons of stories about it (and Bangladesh too, but probably isn’t as cool as Dubai haha). Now we all want to go there so bad! It seems amazing!

What did you do last week/end?!