Goodbye!

Goodbye Orencia! I would like to say it was nice knowing you but I can't. You did nothing good for me. This week I have my kidney surgery then we try Enbrel. I only had one TNF fail before going on Orencia so Dr. V wants to get another one under my belt just to make sure we are going in the right direction. If Enbrel works I can get my port out! Woot woot! Thank God I already have a man with these scars on my chest. Hey it's not like I have to advertise any more right?

I have recruited my exes wife to give me the Enbrel. Last time I gave myself a shot I passed out and hit my head. So she offered to do the deed. She admitted that she just likes to help so she can say she stabbed her husbands ex. Nice huh? Actually she's really very sweet to help out. Plus she just had a baby so I get baby time!

So right now I am off biologics, off NSAIDs, and of DMARDs. So far things are manageable. I still can't do all that I'd like but I'm holding my own. Please pray that this kidney surgery does not send me into a flare.

I'm looking forward to May because I will finally meet my Peggy. We have big plans for that week including a little mini vacation. More people are signing up for the Arthritis Walk including more Squeakers. Oh and I almost forgot. As I am typing this I am wearing my Squeaky Joints T-Shirt! We just got them in this week and they are super cute!

So that's all I've got. Hopefully I can do one more post before the surgery. Hope everyone is having a pain free day!

A Cute Story

My daughter wrote this story and I thought it was really cute. With the Arthritis Foundation Walk coming up
in our area it has been a topic of conversation around our house. I love the innocence of a child.

The Lemonade Stand

By Julia age 8

One Friday afternoon as you and your B.F.F’S Molly, Chloe, and Kaylee where sitting on your front porch when Chloe, Kaylee, and Molly heard a big sigh. That sigh was coming from you. “Julia, what’s wrong!” said Kaylee. “Tell us.” said Molly. “Yeah.” said Chloe. “Well, my mom goes to the Arthritis Walk every year and I want to do something you know to raise money and awareness for Arthritis. What should I do?” you say. “How about a barber stand.” said Molly. “Molly you know everything we do doesn’t have to do with hair.” said Kaylee. “Well that wasn’t very nice.” said Molly. “O.K. Anywho instead doing a barber stand and all of the hair stuff. How about, a face painting stand.” said Chloe. “Well that is a good idea but I don’t know how to paint.” you say. “Well how about a-” When Kaylee almost finished her sentence your mom walked to the front porch and said “Refreshments!” “Sure.” you say. You, Chloe, Kaylee, and Molly each take a glass. “Mom. Why do you have an extra glass?” you ask your mom. “That’s for Mike.” your mom said. You turn your and head then say…

“MIKE!”

“What?” said Mike. “Go! Stay out of our business!” you say. “O.k.” said Mike. “I’m goin’.” “Good,” you say. “Now. We were thinking about stands right?” you say. “Right!” said Molly, Kaylee, Chloe, and…

“MIKE!”

You say. “What are still doing here?” “Mom said I could sit here if I wanted to. So I did.”

“MOM!”

You say. Mom came rushing out. “Mike is annoying us!” you say. “Mike inside now!” said your mom. “Hmm. I think I’ll have some lemonade.” you say. While you were slurping you had an idea! “I got it! We could do a lemonade stand.” You went inside and told mom about the lemonade stand and your mom said “You can do the lemonade stand if you could do it by yourself.” “It’ll easy peasy. Don’t worry.” You say exiting and going back outside. But you had something to worry about. How will you do it?

“My mom has a table?” said Chloe. “My mom has big paper?” said Kaylee. “My mom has a lemonade recipe?” said Molly. “Perfect. Girls were in business!”

THE END

You want the good or the bad news?

So much going on! I'm sorry I haven't posted at all. I will break these last few weeks down for you....the good, the bad, and the ugly. Last we left off I had gone to Boston to my Rheumatologist and we were revisiting my treatment plan and medications. I'm doing well off the Arava. I don't think I was even on it long enough to really make a difference anyways.

I have been having abdominal pain in my upper right quadrant for weeks now. At first we thought it was my kidney stones but then my GP (general practitioner) said the kidney stones were on my left side. She was so sure it was my gallbladder so she sent me for a few tests to confirm. This past Monday I had what they call a HIDA scan where they inject a medication into you to simulate your gallbladder having an attack and they take pictures to see how it's functioning. This test was done in the morning and as the day progressed my pain got worse. By that night I was doubled over and could not lay flat on my back. Tuesday morning I started throwing up from the pain and I was sweating and my blood pressure was high. I called my GP and she told me to come in and see her. During the visit she told me my gallbladder is pristine and functioning perfectly and I needed to go right to the emergency room. Aaaaaaand there came the waterworks. On a side note my GP is one of the most compassionate people I know. Her bedside manner can put anyone at ease and that is what she did. She said I am not giving up on you. We are getting to the bottom of this and fast. She left the room and called the best GI doctor in town. He said to have me go to the emergency room and get hydrated he will run another test. He wanted to get the pain under control so I would stop throwing up. Hydromorphone, you are my BFF, for realz. Both doctors called ahead to the ER while I headed over there. I got hydrated and drugged and then I went home. The next morning my phone rang and it was the GI doctors office. They wanted to see me in their office that day. Keep in mind this doctor called me and I am not a patient yet. We go in and talk with his physicians assistant and she sets me up for an emergency endoscopy with the GI doc the next day. Which was yesterday, Thursday. I go in for the endoscopy and I literally meet my new doctor in the operating room. (normally I would research the bageezes out of a new doctor just to even walk into their office let alone let him come near me with sharp objects but I trust my GP fully. That and my GP has been my GP since I was 15. Yep you don't have to do the math. That's 21 years!) So here I am on the operating table shaking hands, saying nice to meet you, thanking him profusely for fitting me in when I wasn't a patient. He said "Well you are now. Now let's figure this out" and out I go. I wake up and learn that my duodenum is inflamed and they took a biopsy. I have to stop the Celebrex ASAP. Celebrex is a NSAID and one of the only things working right now to combat my puffy joints. So now no DMARDs (my liver can't tolerate) and no NSAIDs which in the RA world is huge. Rheumy and I have lots to talk about in my next visit. GI doctor gave me some Nexium to repair the damage and in a few weeks I'll be golden.

Now on to the kidney stones. Today I met with my urologist up at UCONN medical. (go Huskies) She showed me the CT Scan results. WOW! Yup I have stones. The urologist measured them in CM not MM because they are so big. They are at least 1 CM. Thank God they don't hurt yet! Knock on wood. The theory is RA meds. She doesn't want to blast them because she wants to study them so surgery it is. Fine by me! Knock me out, take the stones, I remember NOTHING. Now I don't have to feel like a ticking time bomb waiting for them to drop. These were found by mistake when they were taking pictures of my gallbladder. Now that all the crappy stuff is out of the way I'm going let you in on the exciting things happening.

First I want to tell you that Peggy and I launched our website on January 1st. Would love for you to check it out. Just click on our logo below.  We are building it to be a great resource and support system. Your feedback on the site would be much appreciated because we are still in the early days.

Second I was named the 2012 Arthritis Walk Ambassador. This is a great honor to be recognized for the work I've been doing on getting the awareness out about Rheumatoid Arthritis. I am excited to be a part of the walk committee this year and I'm working with lots of great people from the Arthritis Foundation. To top it all off I get to wear a sash at the walk. I think all those years doing pageants is coming out in me because I am very excited about the sash! This year several people from our Squeaky Joints group will be coming to Connecticut to participate with me at the walk. Peggy and her family will be flying out and we finally get to meet in person. To read our story you can refer to the "about us" tab on our website. Then after the walk on to some quality time with our 2 families on a mini vacation to NYC. If you happen to be in the CT area on May 20, 2012 come join us! It's going to be a great day! Click here to join the Squeaky Joints Team.

Last our Facebook support group has been growing. If you have Rheumatoid Arthritis please stop by. No pressure. If it's not for you, you can leave. If you stay we would love to get to know you. Here is the link.

So there we go! The last few weeks in a nutshell. Off to spend some quality family time. I hope everyone enjoys their weekend!

Boston visit and my meds

Just wanted to update you guys on where I am at with my new doctor. Yesterday we took the drive to Boston to for my appointment. Can I just say I LOVE everyone up at Beth Israel Deaconess Medical Center! The doctors, the support staff, the nurses; all are amazing to me.

Ok so I am off the Arava (in your face chemo pill!) until the whole kidney stone/infection issue is clear. Because my old doctor put me on Orencia after only 1 TNF fail (Humira) she will be switching me to Enbrel next month. I am very unhappy because I have the port. As you all know this port experience has been the suckiest (is that a word?) thing ever! If you don't know you can read about it here. So basically I have to get shots in my thigh and stomach twice a week and go every few weeks to get my port flushed out. What she said makes sense though and she knows best. She said Humira and Remicade (the I.V. one I wanted to go on) are very similar because you can build up antibodies quicker than Enbrel. For that reason she is optimistic about Enbrel seeing that I failed Humira.

I also need to get an MRI on my knee because it's bad. I fall in that slim percent of people that don't take well to cortisone shots. Apparently the cortisone can form crystals in your joint causing pain. Nice huh? I also have to go to an Orthopedic doctor for my knees and hip. Something every RA patient dreads hearing. When you get sent to that type of doctor it means deterioration has happened and surgery is in your future.

Then she lectured me on not calling her enough. She said I should not wait until my next appointment if I am hurting or something is wrong. I need to check in with her and she wants to hear my voice to know I'm ok. Have I mentioned how much I love her? She's amazing.

I thought I would list for you the medications I am on. Just in case you are on them too or your doctor is planning to put you on them and you have any questions about side effects. I know there are different uses for these medications. I have listed what I use them for.

1. Orencia ~ I.V. biologic that reprograms my cells to not be inflamed.
2. Celebrex ~ inflammation
3. Amitriptyline ~ pain
4. Cartia ~ blood pressure 
5. Clonazepam ~ calms me the day of my infusion
6. Cymbalta ~ pain
7. Folic Acid ~ helps with nausea from chemo pill
8. Hydrochlorothiazide ~ blood pressure
9. Lidoderm patch ~ pain from port (sitting on brachial nerve)
10. Minocycline ~ works with Orencia to get rid of that flu like feeling
11. Lisinipril ~ blood pressure

I think I feel a nap coming on so I'm ending this here.

a small milestone

My husband and I are coming up on our 11th wedding anniversary. We have seen so many things good and bad in our relationship. I'd say the biggest challenge has been my RA and all the complications that come along. We have survived thus far and will continue.

Last February we celebrated our 10 year anniversary with a great weekend away in Newport, RI (a special place for us). That weekend I wore my wedding rings, actually squeezed them on these sausage fingers is more like it. That weekend I came home, put my beautiful rings in a jewelry box and never wore them again. My fingers had swelled permanently just way to much. Size 7 to a 10 to be exact!

At the time I wasn't to disappointed. I was ready to go shopping for a temporary set until we had the money to get them reset because the setting was wearing thin. I ordered a new set and it came in a few days. This set of course was not the real thing. I'm not made of money!

Over the next few months I found myself getting sad looking down at my hand. RA had won. I felt defeated. What else was I gonna have to change? These are not the rings I got married with. These are not the rings that made me smile when I was having a rough day because they were so beautiful. These were not the rings that were there for the birth of my daughter and all the other important things in our lives. These rings were a symbol of the disease. Not a symbol of our family's fight.

I relayed my feelings to Joe and he got right on it. Saving money here and there so I could get them fixed, spruced up, and appraised. Today I picked up my rings. Today I won a small battle with RA. Now when I look down I will think of my family and how perfect they are and smile.

What you may not know about calcium

It's funny the little things you think about when you are laid up in bed. Today I was thinking about some of the questions and concerns regarding muscles I've seen in the group. If you haven't seen my video on why we get muscle spasms you might want to watch that first.

Ok that being said I want to tell you about calcium. You have heard that calcium is a very important part of your diet. Growing up your mom always said it was good for your bones. What you might not know is that it is also important for your muscles. One of the components to helping your muscle contract is calcium. From running a marathon to just changing the channel on the remote you are using calcium to help move those muscles. Even your heart muscle uses calcium. Think of all the muscles involved in one little movement. 

Now knowing how much your body relies on calcium to work answer this question. If  you are not getting the recommended calcium in your diet everyday where is it coming from? What is supplying your muscles with the calcium needed to move? With 99% of your bodies calcium being stored in your bones and 1% in your blood you bet it'll be coming from your bones. That can lead to frail bones that break easily. Add to that the fact that you have RA and doesn't that just make your joints hurt thinking about it? 

If you do take in the recommended amount of calcium which is about 1,000mg/day your muscles will use the calcium you supply that ends up in your blood stream and that will be enough. Your muscles won't look to your bones for it's supply. So like your mama said "drink your milk"!

You have a choice

This time last year was so hard. I was depressed. I had gone through 3 port surgeries in a month because of infections and failed ports. I felt like a human pin cushion getting poked 2-3 times a day. I had a hole in my chest carved out that looked like a bullet hole. I spent my Thanksgiving with my visiting nurse unpacking and packing the wound. One port surgery wasn't so bad but 3 in a month, in my chest, that was painful.

I was convinced at 36 that was how my life would be forever.  That's when your mind starts playing tricks on you.  Why should I expect my husband to stay around? I'm not who he married. We met playing street ball against each other in the park. I couldn't even walk to the court from the knee pain. Julia, I was convinced, was going to resent me. Missing out on a home, a yard, and other things because of this disease. My friends, I knew them through Facebook and text messages. What could I offer them? I couldn't show them a good time.

I had no hope of a brighter tomorrow. Let me tell you, that's a bitter lonely place to be.  Looking back I wouldn't change a thing. I would do it all again. What I'm realizing is in my mind I had accepted my RA to that point. I hadn't in my heart. My heart was mourning. My heart was angry. My heart was exhausted from staying strong. I was a robot. Just going though the motions.

At the end of the summer my life changed. I met Peggy. She was a ray of sunshine. She gave me hope. She was newly diagnosed. I found my strength again. She needed me. She was like a deer in headlights so scared and unsure of the path ahead. I rose to the challenge and guided her. Amazingly that last piece of hatred in my heart healed.

Suddenly, almost overnight, I changed. I found my road again. I knew my way. Now with a Facebook support group 350 strong and growing I feel fulfilled.  We trademarked a logo and the name of the group. We are raising awareness all over the world.  It was so hard for whomever in the last generation that had AIDS. No one knew what it was. They always had to explain. That's us now. The next generation, they will know RA like we now know AIDS. That's a promise.

RA can be horrid. RA can be rewarding. It's your choice. Find the answer in your heart