My First Infusion

After trying Enbrel for over 6 months, my rheumy decided to put me on something else. The Enbrel simply did not work for me. It doesn't work for everyone. I hate the commercials for all biologics, like Enbrel and Humira. It makes it seem that if we take this shot, we will be cured. Ya, right. It takes about 3-6 months for them to start working, if they do at all.

Anyway, at my last appointment with my rheumy, he decided to put me on Actemra. It has the same side effects as Enbrel does but it could also raise my cholesterol levels. I have always had an issue with my cholesterol. He did lots of blood work and then called me the next day. Apparently my cholesterol is great, for once. It was 167, down from 264 from last year. Because of the cholesterol risk, he decided to put me on Remicade instead. Fine with me. I have herd lots about it and it works for them.

So, today was my first infusion. I got there a few minutes before my appointment, just in case. The infusion center is a big open room. We have recliners, our own tv's and our own headphones that will stay there. They offered me snacks and something to drink. I was kinda dehydrated so they gave me a bottle of water and gave me intravenous fluids before the infusion. I was even given a nice hot blanket.

My nurse, Cindy was so nice and explained everything to me. She started my iv in a vein in the middle of my hand. She missed the vein or went through it because the saline started to build up in the area around the vein. It didn't hurt but I started to get very light headed almost right away. IV came out and I got put in the blood pressure machine and layed back in the recliner. I was sweating and felt like I was going to pass out. Hate that feeling.

After a few minutes, I felt back to normal and Cindy went back to starting up the IV. Second time was on the top of my wrist. It didn't hurt but man when that tape came off, that hurt.

I guess it takes 30 minutes to mix my Remicade because it goes by your weight, so they gave me my fluids while I waited. I also got a Benadryl and a couple of Tylenol. Good thing I asked my neighbor, Nancy, to drive me. Benadryl makes me tired and I sure was once this was all done.

Once the Remicade was ready, that got hooked up to me. It took 2 hours for that to get into me. I had my phone, a book and come needlework to do while there. I tried to do some of the needlework, but I think me moving my hand, even the little I was, messed up with the IV. I think the alarm on the pump went off like 5 times because the needle kept bending inside my vein. Didn't hurt thank goodness.

So once the Remicade was done, I had to stay an extra half hour to make sure I didn't have any issues. They kept me hooked up to the IV and finished off my bag of fluids. The last hour I was really cold and dozed a little. I was really tired from both the Benadryl and the fact that I was there for over 3 hours. Long draining day. The next infusion is in 2 weeks and that one should go faster, plus I don't have to stay for the extra half hour after.

I took an hour and half long nap when I got home.I think the only reason I woke up was because I herd Matt come home from school. I would have slept longer I think. I am hoping that this stuff works. I am so sick and tired of being sick and tired.

Happy Halloween 2012

Thanks to Hurricane Sandy's arrival tomorrow, our town celebrated Halloween tonight. For the past few years, Matt has always been dressed for the military, but this year he decided on something different. After seeing some ninja weapons at Walmart, that is what he wanted to be.

All I did was dig out some black sweats, a black turtleneck and made a head piece out of a black shirt. All I really paid for was the weapons, which cost me 8.00. After I put on his head piece, he looks at me and says he looks like a terrorist. I was like, Ummm don't say that outside this house. He kinda did, I guess.

A week ago we decided to carve one of our pumpkins. I saved all the seeds to roast up.

 

Not bad, eyes are a little off though.

Seeds all cleaned and dried all ready to be oiled and salted up to roast. Yumm!

The pumpkin all lite up with a taplight. LOL

We also grew our own pumpkins this year, with help from my dad. He gave us the seeds. We gave him the biggest one that grew.

These are the ones we kept. They eventually turned a little darker orange red.

The pumpkin that went to dad.

My new toy

This summer we grew a ton (and I mean a ton) of tomatoes. We ate a ton and the rest I cut up and froze till I could borrow a food strainer to process all my Roma's into sauce. Towards the end of summer, we were getting sick of eating the Grape and Beef Steak tomatoes, so I chopped them all up and froze them all.

Three gallon sized bags, 2 quart and one sandwich sized bags full. Then the hubby said to go ahead and buy myself the strainer I wanted. This showed up this past Monday afternoon:

My food strainer and additional screens for pumpkins, berry's, grapes, and salsa. So I put all my tomato bags into the fridge to thaw out. I had to dump out a lot of water from the ice melting.

 Here it is all set up, just ignore my clean dishes in the background. hehe

In use. Look at all the yummy tomato goodness.

Full pot of sauce cooking on the stove to thicken it up a little. It was still very thin even after letting it simmer for a long time and adding tomato paste. Still smells yummy though.

Leftover tomato skin and seeds for my compost bin. I wonder if any tomato plant will start to grow?

All canned and cooling on the counter. I got 8 pints out of all those tomatoes. Not bad for a first time.

Squeakers Spoon Swap

I found this wonderful support group on Facebook, of all places, called Squeaky Joints. Fits for those of us with RA and other auto-immune diseases. On September 11th the group celebrated its first birthday. As a little celebration, the group admins decided to do a spoon swap. For those that read the Spoon Theory in the past posts about my RA you will understand the reasoning for this.

So, it took me a bit to find the spoon for me to send out. I wanted to find something that screamed Heather. I wanted something that would tell the person who receives my spoon to know a little about me by just looking at it. This is the spoon I found.

It's a spoon that looks like a shovel. I love gardening. The spoon is a pretty good sized and can be used as a tablespoon measure or as a tea bag holder (I love my tea also). Today I received my spoon from a fellow Squeaker. It is a tiny charm on a necklace. It is soo cute! I need to get a bigger chain for it (I like them around 22" so I don't feel like I am being choked. This is my spoon.

I actually wrapped the necklace chain around my wrist twice so this is my hand, not my neck. Isn't the spoon cute? I love it!

Living with Rheumatoid Arthritis Part 3 ~ Daily Life

So, what do I do everyday that is different from everyone else that is not suffering from chronic pain? Please read the Spoon Theory, if you haven't yet, to better understand my daily life and this post.

Now that I am no longer working, my days are a lot less stressful. This is just a brief

When I was working, I would try to get everything done (aka chores) within 3 hours. That includes laundry, dishes, picking up the house, showering, making the bed, sweeping the whole house, any kind of shopping, and making dinner by 4pm. I had to take a nap to function at my late night job, I was down at around 1pm and up at 3pm. I would get home from work at midnight and finally settled and in bed by 2am only to wake up at 7am and start my day all over.

Now that I am not working, I have created a schedule that I try to follow. If something doesn't get done on it, then oh well. I also get up at 6am so that Matt gets up and eats before leaving for school at 7am. I try to be in bed by 11, but that doesn't always happen. This is my daily morning routine:

Get up
Make bed
Get dressed
Eat breakfast
Take meds & vitamins
Brush teeth
Put on make up/moisturizer
Fix hair
Clean bathroom sink
Brush toilet
Do load of laundry
Feed pets
Clean litter box
Wash/put dishes away
Thaw dinner
Pickup & put away
Hot spots
Check e-mail/Facebook
Meditation time

This is based on the book Sink Reflections by Fly Lady. The pick up & put away is the basic picking up things that might be laying around, like a magazine on the sofa. The hot spots are areas in my house that tend to gather clutter very fast. Those areas are my kitchen table, my side of the bedroom (I tend to have a ton of books/magazines on the floor and a drink from the night before).

Again, following the Fly Lady method of cleaning, My house is divided into zones. Each zone gets a one week focus and a deep cleaning. Next week is my kitchen. It is also the week my dad is visiting and the week that the new World of Warcraft expansion comes out. so I may be slacking in the cleaning a lot more. LOL You're probably thinking that this is easy and you can do it in like an hour. Well, this takes me about 3 hours, not including the weekly zone cleaning, any shopping that needs to be done and dinner to cook.

Everyday is also assigned a little list of things that need to get done on that day. For instance, today is Thursday, so I have these to do in addition to my morning routine:

Pay the bills
File papers
Clean out purse (mine is huge and accumulates fast)
Clean out car (my backseat is bad and I have been slacking bad on this)
Clean laundry area

Fridays and Saturdays I try to finish up anything that did not get done during the week for an assigned day. Sundays I relax and go through my coupon binder and new coupons.

This morning I was reading a post that I wrote back in March of 2011 when I was first diagnosed with RA. Man, how my views have changed since then. Back then, I did not want to be on any medication and to do a more natural way. Well, there is no "natural" way that is safe. Even though my joints have not gotten better and seem to be worse, I know the medication has slowed down the damage than if I did not take anything at all. Yes, I hate the side effects, but I also like to be able to walk and use my hands.

Dinner Plans for the week of 9/17 - 9/23

Monday - Tuna Casserole


Tuesday - Homemade Veggie Pizza


Wednesday - Roasted Chicken, Roasted Potatoes, Salad


Thursday - Taco's, Chips & Salsa


Friday - Stuffed Peppers


Saturday - Stuffed Shells, Bread Sticks, Salad


Sunday - Cheese Burgers & Hand Cut Fries

Coastal Clean-Up, Jenness Beach Rye, NH

Today our scout troop cleaned up the beach in Rye, NH. It was a beautiful day. Started out kinda chilly and cloudy, but warmed right up. The sand was so not nice to my arthritic ankles, but it was nice to get out. Now I am resting up and hoping that the swelling goes down. Here is a little picture montage of our morning.

Love the sun rays shinning down through the clouds

Lots of surfers out there today

The hubby, Matt and some of the other boys

My feet. Man was the water cold. Kinda felt good for a bit

Love the rocks

Sandpipers hanging out till we showed up

Digging out trash

Looking for more trash

and more trash

My footprints in the sand

Having a little break

I love the water. Sounds so soothing

The waves

Seaweed. There were tons of it

Trying to get out some thick styrofoam from under the rocks.

Dinner Plans for the week of 9/10 - 9/16

Monday - Cookout with a neighbor


Tuesday - Frank & Beans


Wednesday - Baked Ziti, Garlic Bread, Salad


Thursday - Penne Pasta w/ Kielbasa, Salad


Friday - Bourbon Street Chicken, Brown Rice, Peas, Salad


Saturday - Chicken Cordon Bleu, Corn, Mashed Potatoes, Salad


Sunday - Grilled Chicken Salad

Living with Rheumatoid Arthritis part 2 ~ My Medication

One thing about RA is that it is an invisible disease. If you look at me you would never know that I have this life changing chronic systemic inflammatory disorder. There is no cure. Only different medications to help treat it, but it will never go away.

The first course of medication the rheumy started me on was Methotrexate (mtx), as well as continuing the Prednisone. The Prednisone acts like a bridge so that when the mtx finally starts to work, I would be weened off the Prednisone. Didn't really work. Due to the Prednisone weakening my bones (I have been on it many times before because of my asthma), I also take extra calcium and vitamin D.

Over the past year I have come to dread Mondays and Tuesdays. Monday is the day that I take the mtx. It makes me feel like shit, to put it nicely. Imagine your worse morning sickness (or flu for those who never have had children). That is what I feel like, only I don't throw up. It does take a few hours to kick in and then it kicks my butt. I get super ass tired and tend to spend the next two days in bed. Tuesdays I am still tired and nauseous, but I am also in the bathroom. A lot. I will spare you the details. Methotrexate in very high dosages is used to treat cancer such as Leukemia in children. If I feel this bad taking 30mg once a week, I feel for the kids who have to take 1100mg every day.

I started taking the pill form of mtx then changed to the injectable form. I really had no problems giving myself the shot. Maybe at first, but you get use to it. I would close my eyes before stabbing myself in my belly fat, then I would open them and push the plunger. The shot made me more tired but a little less sick. I eventually changed back to the pill form when I learned there was a shortage of the injectable. The kids with cancer need it more than me in my opinion.

Not only does mtx make me feel like crap, but it also damages my liver. I have to have blood work done once a month to make sure my enzyme levels are ok. If they are high (which has happened a few times so far), I have to stop taking the mtx. Eventually a flare happens about a week or so later on. I have to watch my alcohol consumption. Not that I am a drinker, but I do enjoy a margarita during girls night out. My first rheumy told me that I can never ever drink again. He was older, like my dads age and always seemed kind of tired and grumpy. My new rheumy (who is hot and near my age) said that an occasional drink is ok. He said that my girls night out, birthday and anniversary drinks are ok. Both of them also said to not get pregnant. No worries there unless God wants to play a cruel joke on me. The mtx is a very toxic drug and can cause lots of birth defects.

Now, you're probably thinking, "Why don't you take one of those medications they show on tv and be all better?". Well, I am. I have been taking Enbrel for the past few months. What the commercials don't tell you is that it can take 3-9 months before it could work. It doesn't work for everyone and if it does work, eventually it may stop working and then another drug is used instead. Rinse and repeat. It is not a "magic pill" like it seems on tv. So far I don't feel better. In fact for the past few days my ankles have been hurting bad. I know I am in a flare right now. I still have joint swelling and damage being done. I am still stiff and sore. I am still in pain.

Here is all the medications I take just for my RA. Some people take even more than I do.

The orange pills and the vial with the orange tipped syringe are both Methotrexate. I have both forms but only use the pills. The mtx and Enbrel are taken once a week. Everything else is taken daily. They are from left to right, Calcium, Naproxen (I am asking for better pain pills at my next appointment. I have been taking some of my husbands Vicodin at times), Folic Acid, Vitamin D, and Prednisone (which I am not on right now but have extra in case).

Currently I am not on the mtx. My last enzyme levels were extremely high and the rheumy asked me to stop taking it. He called me personally to tell me a few hours after the blood was drawn. Scary times. When he put me on the Enbrel, I asked if I could stay off the mtx. He agreed to see if the Enbrel alone will work. So far it hasn't, so I have a feeling that I will be back on it come my next appointment in November. Uggg.

Off to take a shower and use up a bunch of spoons.

Living with Rheumatoid Arthritis Part 1 ~ The diagnosis

What does the face of Rheumatoid Arthritis look like? This does.

This is me last year sometime. I am 35 (will be 36 in 2 months Ack!). I am a wife, a mother, a sister, a daughter, a friend. As you can see I am not elderly. RA is not an elderly person disease. Anyone at any age can get RA. Women have a higher tendency to get it and it may be hereditary. My grandmother and great grandmother on my mothers side both have/had it. My mother does not, she has another form of arthritis.

I was diagnosed with Rheumatoid Arthritis in April of 2011, but I suspect I had it way before then. I can remember back in December of 2010 I had this intense shoulder pains. It felt like my arms were being ripped from their sockets. Being the usual stubborn me, I put off going to the doctor. I hate them. I would go for my yearly physical and whenever my asthma was bothering me, but I figured I just pulled something or slept wrong.

I finally went to see my primary doctor (whom I love and have had since I was 18) in February of 2011. She didn't suspect RA at this point and thought the same as me, that I might have just pulled or sprained my shoulders. She gave me a prescription for Naproxen. I was to take 1 pill twice a day and to call her if it does not go away or gets worse. We all know how much I love the phone, so we know that never happened.

I took Matt on an over night trip to the Museum of Science in Boston with the Cub Scouts towards the end of February. I was in so much pain then. Sleeping on an air mattress on the museum floor and carrying around my purse (which is a wanna be Vera Bradly bag that I got when I worked at CBD). You can check it out here. It's a rather large bag and I had it filled with snacks, a couple of water bottles and my usual stuff (wallet, book, Kindle (yes both a book and Kindle), planner, meds and other little things).

Next change came to my middle finger on my right hand. The middle finger joint was purple and swollen. I got a kick out of flipping people off to show them my finger. LOL. It hurt to write (I am a righty of course), eat, type, use it for anything period. This kind of freaked me out and when I showed it to my mom, she mentioned I might have arthritis.

So, off to my primary doctor I went. She scolded me for not calling her months ago. This was the end of March at this point. My shoulder was still hurting, but by this point, I got use to dealing with the pain. It was still there, but I just toughed it out. Well, when she looked at my finger, the first thing she said was that I might have RA.

Blood tests were done and the next day Dr. Rodman called me herself. She never ever calls. Normally I get my test results in a message via this system her office uses then a letter. Maybe her nurse calls, but usually not. Well, right away this had me super ass freaked out. She said that my RF factor was very high and she had already set up an appointment for me to see a Rheumatologist the next month.

April comes around and I go to my first (of many) appointments with the Rheumatologist. I felt odd in the waiting room. I was the youngest person there, well my son was, but he does not count. I meet the doctor and he goes over soooo much stuff that my head was spinning. He recommended a book from the Arthritis Foundation to get, which became my "bible" of sorts so help me get the basics of what I have. I still flip through it every now and then. He gave me a ton of pamphlets to go over and we talked about different medications out there. He was giving me 2 weeks to think about and absorb all I could. I left with a prescription of Predisone, which I have been on a ton before because my asthma.

More blood was taken, pee'd in a cup and had a bunch of x-rays done. Mostly of my hands, shoulder and my lungs. Because I am an asthmatic and RA can affect the lungs, he needed a baseline shot of my lungs.

Well, my hands are killing me now. I know I used up a ton of spoons to type this post. Read this story about the "Spoon Theory" to understand what on earth I am talking about

Dinner Plans for the week of 9/3 - 9/9

Monday - Homemade Chicken Salad Subs

Tuesday - Grilled Chicken Salads

Wednesday - Pasta and Salad

Thursday - Sliced Turkey, Mashed Potatoes, Salad

Friday - Italian Sausage, Pepper, Onion Subs, Salad

Saturday - Crockpot ribs, Rice, Beans, Salad

Sunday - Bourbon Street Chicken, Rice, Salad

First day of 6th grade

This past Monday was Matt's first day of school for the new school year. It is his first year in middle school. All the papers that the teacher have given Matt for me to sign have some pretty specific "rules" for each class, and every class is different. None of the classes seem to use notebooks. They all want him to use loose leaf paper in a binder. He has a binder, but it is for all the papers that he will be doing in school or bringing home. Notebooks hold paper easier and nicer than a binder anyway.

This year Matt and I have to get up at 6am (I am not normally a morning person) so that he can get the bus at 7. The bus stop is at the end of our street, so not to far away. I joined him at the bus stop of the first day, but since then, I have let him go by himself. There are three other neighborhood kids at his stop this year too. Oh and the bus driver he has this year is nicer than last years. Hopefully there will not be any issues on the bus like there were last year.

Matt's 12th Birthday Party

Today was Matt's little party. I just invited my sisters family over to play/hang out. They had never been to our new place, so it was the perfect time to have them over. It was kind of nice to have a low key party where I didn't have to play hostess for long. Once everyone knew where things were, they just helped themselves, which was nice. 

Matt got some pretty cool gifts that my sister made. She showed me the grenade a few weeks ago and I asked her if she could make one for Matt. She also made a bomb and a stick of dynamite. They are soo adorable.

We got him a couple of books. I know boring. He hates to read but has been totally into the Diary of a Wimpy Kid books. I found a Zombie Diary series and Undead Ned, all are written like the Wimpy Kid books. He thought they were funny and are next to his bed on top of the books he is currently reading. We also got him the Guitar Hero Metallica game. He is really into the music I use to listen to back in high school. Oh and a bomb bird mug. His favorite Angry Bird. Maybe now he will stop using my butterfly mugs. LOL

The weather was perfect out. Nice and cool and sunny out. I even had to put pants on because I got cold. Although I have been cold most of this summer and have hardly wore shorts much. 

Birds I printed out and colored for our front door. I thought they were cute and needed a little something else.

Angry Bird Birthday - Prepping stages

This Sunday is Matt's birthday. We can't afford a big party like we normally do because I am no longer working, so we are just having my sister's family over. Matt has asked to have an Angry Bird's theme to his little party. So, like most people do nowadays, I hit Pinterest for ideas.

I made Pig Goody bags. The birds tend to get the main focus and I thought the pigs were cute. Inside the goody bags we have stickers, gummies and cookies all Angry Bird themed.

We also found this cute little printable for "Angry Bird Poop" that I just had to have. Matt got a kick out of it too.

I bought all different colored plates, cups and plastic wear to represent the different birds. I have seen some places that put faces on the plates for the birds and just used a clear charger on top of the plate for the food. I didn't have the money for that and honestly thought I had enough bird things going on. However, I had to make our blue cups into birds.

What party isn't complete without a Pinata. Seeing how a pinata always gets beat up, I had to make a King Pig, cause well the birds don't get beat up, the pigs do. After working my butt off for days making it, I didn't want to have the kids beat the crap out of it and ruin it. Matt also loves it and wants to keep it after the party. So, we decided not to use it as a pinata, but as a table centerpiece. LOL

Seeing how this is suppose to be an Angry Bird party and not the pigs party, I had to have more birds around. So I printed out some pages to make Angry Bird balloons. All the kids were attacking each other (and me when I went into the house for a minute) pretending they were the bird they had.

No party is not complete without food. Of course they sell crackers that look like Angry Birds now, which the kids were acting out as they were eating them.

And of course there is the cupcakes. Instead of a cake, I figured these were easier to make. I have a ton left over that I will be bringing to a cookout on Sunday.

You can find all the items I used to make all my things here:
Balloon, pinata, and goody bag printables
Angry Bird Poop Printable
Angry Bird Cupcake Idea