Sunday, January 29, 2012

It Took Years (& Tears) To Get That Smile

“You take the bad with the good, Rise up through it. Live in the mist of it. It's the bad that lets you know how good the good really is. Don't let the bad leave you thinking like there ain't any good. There is, and lots of it, too. ”
― Charles Martin, Chasing Fireflies
Life with a chronic illness isn't easy. Often people who are diagnosed with RA, or kids with JA, have suffered through a lot of testing, different medications and of course, pain. People look at us and think, "She looks great! She can't possibly be THAT sick." Well, yes, we can be.

What the public doesn't see is the stuff that we must endure to look so good. They don't see the shots we give our kids, many are on methotrexate. MTX is a chemotherapy drug used in cancer patients. It's used in lower doses for autoimmune arthritis treatment, but the side effects are the same. Hair loss, nausea and vomiting, extreme fatigue, liver damage, ect. Many of us describe the days following our weekly dose of MTX as a hangover feeling. It's not nice. You don't see us sitting at the infusion clinic for hours while medications drip slowly into our bodies all while praying for relief. You don't see the bottles of medications sitting on the kitchen counter, night stands or dining room table. All you see is that smiling photo the media CHOOSES to show you.  

I'm all for showing the happy face. However, there is a lot that goes into looking this good and the world will never understand how serious these disease are if we don't show the BAD with the GOOD. Jordan doesn't always roll out of bed with a smile. Like several other kids and adults, she doesn't sleep well when she's flaring. She's still stiff most mornings no matter how controlled her disease seems to be, but she hides it.

Over the years, we've had to put Jordan on a lot of medications. MTX scared me, but she needed it. We added Enbrel but she failed it after about 9 months. We had to switch to Humira. Humira, in Jordan's opinion, is the worst med she has ever been on. MTX made her sick but Humira sent her into a hysterical fit every 2 weeks. It took us hours to get J to even sit down so we could attempt the shot. Humira burns. J says it's like injecting acid into your body, only a million times worse. Once we got Jordan to sit with me, it sometimes took another hour to let us give the shot to her. I can still hear the scream the first few times she had the injection. To know something hurts your child like that, but can save her vision and her body is the worst feeling in the world. After about one year, we were able to count through the shot. Eventually she allowed me to record her injections so she could help others get through their Humira shots.

In November 2010 Jordan started Remicade infusions because her body stopped responding to Humira. I hated the thought of doing this but I knew we didn't have any other option. She was swollen and her eyes were flaring. It wouldn't be long before the disease made it to where she couldn't walk again. Jordan responded well for 13 months. In January 2012 we switched her to Orencia because, in true Jordan fashion, her body stopped responding to the Remicade. While there are still a few meds left for us to try to help the JA, Jordan has the added issue of uveitis. Some meds are used to treat both diseases but many are not. Right now are choosing to treat the JA and pray that her eyes respond as well. If they don't, I don't know what we'll do next.

I guess my point in all this rambling is, Jordan, like myself and MILLIONS of others, MUST do stuff like this,


So we can keep smiling.



We cannot allow the media to keep showing the good, without the bad. People know what cancer can do to a person. Shouldn't the public know what autoimmune arthritis can do to us? Shouldn't the public know that people DIE from this disease? CHILDREN DIE. That sweet boy who lost his life to to JA was just a few weeks younger than Matthew. It's unacceptable. The world needs to know how serious and complicated autoimmune arthritis diseases are. 


Friday, January 27, 2012

Help us change the way the world sees Autoimmune Arthritis

Are you tired of hearing, "Oh, it's JUST arthritis. I have that in my ____." "I take Aleve for my arthritis." And if you are a parent of a JA child how about, "Are you sure it's arthritis? He's not old enough to have ARTHRITIS!" I am!

Here's how you can help change the way the world looks at people with AUTOIMMUNE arthritis DISEASES. The International Autoimmune Arthritis Movement is looking for photos of children and adults, of all ages and races from all over the world, who have the diseases IAAM defines as autoimmune arthritis -- Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Sjogren's Syndrome (SS), Systemic Lupus Erythematosis (SLE), Still's Disease, Juvenile Arthritis (JA), Mixed and Undifferentiated Connective Tissue Diseases (MCTD/UCTD)

via IAAM on Facebook,
IAAM will soon be starting our advertising for World Autoimmune Arthritis Day. In doing this, we are searching for photos of EACH of the diseases we represent. We would be asking for 2 photos from the same person: The first SHOWS the disease- nodules, fever, fatigue, rashes, xrays, inflammation of various body parts. The 2nd would be a portrait style photo (headshot) of the same person. You must be willing to have BOTH images published, first names only used. We will select 15-20 photos based on impact, male to female and adult to child ratio, ethnicity representation and need to include all disease strands. If you are interested, please email tiffany@IAAMovement.org to request additional details! Pass it on!

For more information about this project, please contact Tiffany at tiffany@iaamovement.org 
 


 

Monday, January 23, 2012

January 11 -- Mammogram

This was written on Jan. 11, 2012 but wasn't published until Jan. 23, 2012

On 1/11/12 I had my first mammogram. And, the second one about 1 hour later.

I've always had "lumpy" boobs so when I found another lump in mid December I assumed it was the same thing. It felt different but I was positive it was nothing. I had an appointment with my GP for an unrelated issue so I figured I'd hold out until after Christmas. After all, it was nothing.

January 6, 2012 I saw Dr. A. We talked about the other stuff going on and I told her that I had found a lump in my left breast.  She asks me to show her where the lump is. She feels around and agrees that there is something there that needs to be checked out. Before I left the clinic I had an appointment for Wednesday, January 11, 2012 at 9 AM.

January 11th comes. I get myself down to the breast clinic around 8:30. I'm taken in before 9. The tech I had was awesome. She made me feel totally comfortable and reassured me that most findings are benign.

She asks me a few questions, explains what's going to happen and we do the mammogram. It was over in about 15-20 minutes. I sit in the room while she takes the films to the radiologist to make sure everything looks OK. She comes back in, and tells me I can get dressed. I change, and wait for someone to take me to the main hospital for the ultrasound.

I register, change and wait. And wait. A nurse calls me into a room to tell me that there was something on the mammogram and that we needed to get more images. My first thought was, "I expected this." I obviously had a mass. That's why I brought it up with Dr. A. I'm taken to the newer part of the hospital and do about 5 more images on each side. I'm taken back to the area to have the u/s done. I wait for about 15 minutes before I'm called in. The tech does the u/s and I'm sent back out to wait. I swear, I think I was sitting around for at least 2 hours. I'm called back into the room and told I can change but I need to see the doctor because there was a "suspicious mass" that didn't show up on the u/s but it was on the mammograms. So, I change, and wait. And wait, I waited for a good hour, probably more, while other women who came in AFTER me had their mammograms and u/s done. Some needed to see the doctor while others were able to leave shortly after. They were in and out. I finally asked why I wasn't being called back to see the doctor. Seems they "lost" my stuff. Just  my luck. They magically find it about 2 minutes after I asked but the doctor was too busy to see me and he still needed to have lunch so I got to see a nurse.

The nurse told me I had 5 masses and that I needed a biopsy. She said someone would call me with more info. She couldn't answer any of my questions. I gave her my cell number so someone could call me back after lunch with more info. I was sent on my way and told to expect a call later that afternoon.

When I got home, I went into the den and cried. I expected them to find 1 mass, not 5. A few hours later I got a call from the clinic and the nurse explained things better.

5 "cysts" showed up on the u/s. That wasn't really news to me because I did have an u/s when Matthew was about 2 and I was told I had cysts. I did ask why they needed to be drained because 5 years ago, it wasn't an issue. She explained to me that sometimes a mass can look like a cyst but it won't be. So, we need to try to drain it, or in my case them, to make sure that's all there is. I was fine with that explanation.

A few days later I got the call to schedule the procedure. January 18. Should be fun!

Friday, January 20, 2012

A little 'lump' in the road

In early December I noticed a lump in my left breast. Finding these little lumps was nothing new to me. I have what doctors call fibrocystic breast disease, better know in my house as lumpy boobs. Fibrocycstic breasts are very common and despite "disease" being in the name, it's not a disease.  I've have several breast exams and nothing was ever cause for concern until this one lump showed up. I didn't rush to my doctor because I knew what it was and I had an appointment with her for the first week of January.

My appointment with Dr. A went pretty much as expected. I showed her where the new lump was and she agreed that it was probably nothing but since it was new and it did feel a little different than the others, we needed to get a better look at it. I was scheduled for a mammogram and an ultrasound before I even left the clinic.

Wednesday, January 11 was my appointment for my mammogram and ultrasound. I got there before my scheduled appointment so they took me in right away. We did the mammogram and I was sent to the hospital for the breast ultrasound. There I waited for a while. About 30-40 minutes later a nurse came up to me and said that the doctor needed more images. Off for another mammogram. This mammogram was a little more painful the the first one because they needed to compress the breast tissue more since they were looking for something specific.

We finish up and I head back to the area where they do the ultrasounds. The tech calls me in and I'm done within 10 minutes. As expected, I have several cysts. I could see them on the screen. I get dressed and wait to hear if I can leave or if I need to see the doctor. Of course, I need to see the doctor.

I wait. And wait. And wait some more. Finally, I asked the nurse what was taking so long. I had been waiting for over 1 hour and I really wanted to get home. She calls me back to tell me, "The doctor is too busy to talk and he hasn't had lunch yet." Nice, huh? She goes on to say that I have 5 masses. 3 in the left breast and 2 in the right. She sends me off saying someone will contact me soon to discuss the biopsy.

Later that afternoon someone does call and explains things a little bit better. She said that I do have a total of 5 masses but 4 look to be cysts. 1 is a solid mass, it didn't show up on the ultrasound but it could also be a cyst. They won't know until they try to drain it. She tells me someone will call me to schedule the procedure soon.

I didn't hear anything for a few days and I really didn't tell anyone what was going on. I debated telling the kids because I didn't want to scare them. Granny had breast cancer, twice, so they know what breast cancer is. I didn't want to keep this from them either. Jordan knew already. She's quick and catches bits of info and can piece things together. She was fine. I asked her not to tell Matthew and she said she wouldn't. I decided to tell Matthew a few days before I got a call to schedule the biopsy. I told him that there was going to be a day where someone else might need to pick him up. He asked who and I told him. The first thing he said was, "What if it's breast cancer?" I told him if it was, we would worry about that when the tests came back. He gave me a hug and went on his way.

I got a call on Tuesday, 1/17 to schedule the biopsy. They had an appointment for Wednesday, 1/18 at 10. I took it. We went over everything again and she told me there were only cysts. I had her double check because I was told there was a mass to biopsy and I didn't want to go back if they messed up. I was right.

Wednesday morning I get the kids up and get them off to school. I remind them that someone else might be there to pick them up. Rick and I leave around 8:40. As we're driving to the hospital we drive by the cemetery where Granny is buried. I started crying. It wasn't until that moment that everything became real. But still, I kept all this to myself. I wanted to post on FB and Twitter that I needed thoughts and prayers but I didn't. Only a few people knew what was going on and I wanted to keep it that way.

We get to the clinic and I register. Rick and I are sent to this little waiting area. A nurse calls us into a treatment room and explains that the radiologist is going to hopefully drain the cysts. After that is done I'll have another mammogram done to see if I need the biopsy.

I go change and she calls me into the room. I lay on the table and the radiologist comes in and does a quick ultrasound so she can see where the cysts are. They clean my breast, numb the skin with a spray then the lidocaine shots. I felt the poke but nothing more. She was able to get 2 pretty easily but there were several (5 or 6 in the left breast alone) that were hard to reach. I felt a lot of pressure as she tried to reach those. She was done with the left side in about 10 minutes. I flipped around so she could do the right side. There were only 2 on that side so it took about 5 minutes.

I go back for the mammogram then sit with Rick for a few minutes. A nurse comes out to tell me that I do need to have the biopsy done and they were prepping the room. The mass they were going to biopsy is something that was found on my first mammogram on 1/11. I had no idea there was anything in that spot - I can't feel a lump.

I go into the room and they have me lay on a table with a hole. This type of biopsy is called a stereotactic breast biopsy. It was uncomfortable. you have to lay perfectly still because they need to know exactly where the mass is so they can get a tissue sample from the mass. Again, the skin is numbed with the spray, then the lidocaine shot. The doctor makes a small incision and the computer does the rest. Once it's all done there needs to be pressure applied for 10 minutes so the bleeding stops.

I get up, and I think I had another mammogram done. I don't remember. They put steri strips on the incision and band-aids on the holes where they drained the cysts. I got ice packs to wear inside my bra and I was sent home.

Something that was supposed to take 2 hours turned into 4. I was exhausted and emotionally drained. I know that the chances of having cancer are slim. I was told that 80% of women who have biopsies do not have cancer, and that is great. But my mind kept going to that 20% who do. How many of them are young like I am? How many have young children?

On the way home I had enough. I think I posted on FB that the biopsy was done and I had ice in my bra. About 75% of my FB friends are autoimmune friends and they have always been there for me when I needed them. I was overwhelmed and needed support. So, pretty much everyone knows now.

We got home and I didn't do much of anything. I sat with frozen vegetables on my chest all night. I fell asleep around midnight and didn't wake up until 5:30 PM on Thursday. I'm still tired.

Results should be in late next week. I'm still confident that I'm OK. This experience has showed me how unbelievably stressful a simple biopsy can be for any woman. If I had a strong family history of breast cancer I would, without a doubt, be a complete mess.


2/5/12 --

 I decided to add this photo. This is the biopsy site about 5 days later. The site where they drained the cysts was a lot worse. I counted at least 10 needle holes. The bruising is still there almost 3 weeks later. While it looks and feels nothing like it did, I'm still tender around the entire left breast.   

Sunday, January 15, 2012

How it All Started

In December 2004 we were a typical family of 4 with a active toddler and needy newborn. Jordan was 2.5 and Matthew was just about 3 months old. Jordan adored her brother, I was getting into a routine with the kids and had pretty much totally recovered from the c-section. Life was good.

At some point Rick and I had noticed that Jordan would limp from time to time. It wasn't anything consistent but back in October we noticed she was limping while we were at a friends house. Looking back now, that's when it all began. Every Christmas Eve I make cookies. This was going to be the first year Jordan and I were going to actually bake them together. I got Matthew down for his morning nap and as I was getting things started I realized Jordan was walking really weird. After watching her for a minute I went and checked her over and asked if she fell or hurt anywhere. She told me no but after I saw her knee I don't know how we had missed something that huge on her.

I called Rick told him I was taking her to urgent care, grabbed Matthew and we were off. We saw the doc pretty quick and we were sent for x-rays. I was told there was no fracture and everything looked OK and that I should give her Motrin if she needed it. Her knee was red, hot and HUGE! How could it be OK?! But I believed him. On my way out I was told to follow up with our primary ped in a few weeks if there was still a problem. We went on with our Christmas as planned but by no means was Jordan ever 'OK' again.

We followed up with our ped and he repeated the x-rays and ordered blood work. This time I was told her knee had some fluid and that we should probably follow up with a pediatric orthopedic surgeon. OK, so something IS wrong. Our ped wanted us to be seen ASAP but the only ped ortho in the area was booked for 4-5 weeks so I took Jordan to another ortho in the same practice. He told us that she probably fell and would be fine. At this point she had had the swelling and had been limping for about 5-6 weeks. I noticed that the mornings were hard on her. She would call me to get her out of bed and bring her down stairs. She'd sit and watch TV or read books with me for a while then she'd start getting active. The same thing would happen after she woke up from a nap. We kept the appointment with the pediatric specialist because we knew something was wrong. Within seconds he told me she had JRA. Juvenile Rheumatoid Arthritis. After months of not knowing what was wrong with Jordan we finally had an answer and it wasn't anything we were expecting. I remember thinking, “She’s not even three....kids don't get arthritis. There has to be another explanation. My daughter does NOT have arthritis.” Dr. S wanted to do surgery to rule out anything mechanically wrong with the joint, to drain the fluid and take a tissue sample but he was sure it was JRA so he referred us to a ped rheumatologist as well.

Jordan had surgery a few weeks before she turned three, which confirmed the JRA diagnosis. A month later we saw a pediatric rheumatologist. It took us 6 months to finally see the specialist who was going to help her. Six months after her JRA diagnosis we found out that she had uveitis, inflammation in her eyes. It's been a roller coaster ride ever since. She's gone from taking naproxen twice a day to having to take low dose chemotherapy weekly and having IV infusions every 4 weeks. The meds she's been on over the years are scary. They increase the risk if cancer and leave you with no immune system to fight off a simple cold. Jordan has had countless infections which left me scared not knowing if she'd be able to fight it or not.

I've spend years educating myself and others about juvenile arthritis. I can't even begin to count how many times I've heard "Kids don't get arthritis." or "She's too young for that. My Grandma has arthritis!" I wish that were true. The type of arthritis Jordan has is an autoimmune disease which means her immune system doesn't know the difference between her own cells and a virus. It attacks the joints, connective tissue, hair, skin and organs.

I keep reminding myself that Jordan has a mild case of JRA. Yes, she has days where she’s miserable but there are so many other kids who are sicker then she is. They can't walk, run or play. This is no way for a child to live. As a mother it breaks my heart to see my baby in pain and uncomfortable. I know first hand how she feels because I also have RA. It's not just the disease that makes a person with autoimmune arthritis feel bad-- the meds and their side effects are awful. Imagine the flu times a million. You're close but not quite there. I would gladly take the flu over RA and everything that goes with it any day.

But, Jordan is amazing. She takes all this as it comes. I'm not sure how she does it because there are days when I just want to crawl in a hole and die. If she can can deal with this disease then I can too. She's willing to try anything and if it hurts she stops. She does her best to keep up with the kids at school and for the most part she does pretty well. I'm so proud of her and hopefully in time she will beat this disease.

Friday, January 13, 2012

Next PT Session... 3 weeks!

Today is just about over and we survived the week! 5 appointments in one week was tough. But sometimes you can't choose how things fall. When a doctor cancels an appointment, you take the next available. When you're told you need to have a test done ASAP, you find a way to work it in. And I did.

Jordan had PT this afternoon and it went well. She does have swelling in her knees and a few other joints but Ms. Rose told her she could re start her at home exercises again, with 2 added. Jordan fights sometimes - OK, a lot - but I've told her over and over that this is the only body she will ever have. She needs to do this stuff or she will end up with contractors again. We are working on fixing her hips right now. Knees look good.

The best news of the week came today. J should have been going to PT every week. We stretched it to every 2 weeks because I was on top of her at home. We did slack off in October because I was really sick. Then Jordan flared and got sick. I guess even with us being sick and madness that is Christmas, Jordan has improved so much Ms. Rose is stretching her to 3 weeks! I do need to get some weights to work with at home but that extra week before we need to drive out to PT will be nice! That's one less day I need to pull J out of school.

Not a big deal to most people, but at this point, I'll take any and all progress Jordan has and celebrate it!

Wednesday, January 11, 2012

Well that plan went out the window!

We knew J wasn't really getting the full benefit with Remicade anymore. She had decided that she wanted to stick it out until Spring to see if she was swelling because she had been sick. It was possible since an infection ramps up the immune system. And, we all know an over active immune system is what causes autoimmune arthritis in the first place.

Jordan has spent much of her Winter break outside playing. Riding her bike or scooter and climbing the tree. On Sunday she went for a ride with her friends and their dad. She kept up and she was proud of herself. Later that night she was miserable. Both knees were warm and obviously swollen. She sat with me for a long time Sunday night and had me rub her legs. Monday morning she was sore but she tried to go out to play. It didn't last long. She stayed inside with me most of the afternoon while Matthew and the neighbor kids played outside.

Tuesday we got up at 6:30 to leave the house by 7:15 because J had her infusion and appointment with Dr. G at 9. J didn't get up right away. She was very stiff and sore. She didn't want to get out of bed and I had to help her get dressed. That doesn't happen at all anymore so I knew she was hurting. We drop Matthew off with my Dad and we head to LA. On the way there Jordan tells me she thinks she needs to switch to Orencia. She knew her body wasn't responding to Remicade anymore and she doesn't like not being able to keep up with Matthew and her friends. So, Orencia it is.

For those keeping track, this is Jordan's fourth biologic in a little over 3 years.

Right now both knees, both feet and her right wrist are swollen. Her back, neck and hips are hurting too. And, she's back on prednisone. Hoping it's short term, I do not want her on this stuff long term like I am.

Tuesday after her infusion she wasn't feeling well. She had a headache, her stomach was a mess and she just felt ill. This morning she woke up feeling the same way. I had an appointment this morning and I hated to leave her but I didn't have a choice. By time I got home 6 hours later she was dressed and bouncing around.

For those following me, I saw my rheumy on Monday. I'm still not under control but I am better. I can feel the Remicade wear off right around 4 weeks post infusion so we're moving me up from 6 weeks to every 4. We tried 8 and 6. We can up my dose if 4 week intervals don't help but if that doesn't do the trick either, I'm going to Orencia.

Me and my girl. We're 2 peas in a pod. I wish we could get our treatment done at the same place. It would save us so much time and gas!

Sunday, January 8, 2012

It's Jordan's body

As you may or may not know, Jordan has been in this on and off flare for several months. Labs and swelling are creeping back up. Her PT noticed swelling I didn't see a few weeks ago. We were told no at home PT while she is swollen but we do have 1 exercise to do to try to avoid contractures. We've both been doing them. I don't want contractures either!

We've been talking about med changes for a few months. With the last set of labs showing an even higher ERS then the previous one 4 weeks earlier, Dr. G had suggested switching J to Orencia. J's eyes have been responding to Remicade but the last 2 times she's seen the optha she has had a few inflammation cells floating around. My fear is that she's building up a resistance to Remicade just like she did Enbrel and Humira. In June 2011 we took J off MTX and started CellCept. If you've taken MTX or know someone close who has you know it's not a pleasant drug. Jordan could no longer tolerate MTX so it was best if we tried something else.

Dr. G called me last week to suggested Arava or Orencia. J has an appointment on Tuesday so we had a few days to think and research the meds. I already knew I didn't like Arava but I decided to research it more. I'm not putting my child on that. No one can convince me to. Orencia, it's new but it's a biologic so the side effects are very similar to the ones she's been on before. It's hard to make these decisions for your child. We really don't know what the long term side effects of these medications are. But, what choice do we have?

I talked to Jordan about her options and at first she said, "I don't want to take ANY of them. I want to stop ALL of the medicine." That's not an option and she knows it. Later that night or the following day she told me she wanted to stick out her current meds until Spring. She's been sick on and off so she's thinking her swelling and elevated labs could be because of the illness. She could very well be right.

So, as of right now, nothing is going to change. Of course, if she gets worse then we will move on to Orencia. Praying we won't need to.

Wednesday, January 4, 2012

The 'Net and Social Media Can Be A Wonderful Thing

Yesterday I decided to create a Jordan's Pink Angels page on Facebook to keep friends and family updated about Jordan and our upcoming walk. I sent out invites to other JA families and to our family members I knew would be interested. I also put a status on my personal Facebook page saying that I created J's page so anyone could go "like" it. When I went to bed this morning (at 4) I think we were at 45 likes. When I woke up at 9:30 we were around 60-ish. J's goal was to get 100 likes before the end of today so I posted and asked people to share her page. It is currently 8:36 PM Pacific time and we have 266 likes.

Over the last few years Jordan's goal has been to raise awareness. If you've followed us for a while you know she's had some trouble with people believing her. In June 2011 we even had an incident where a pharmacist questioned her JA. The videos we have posted on YouTube of Jordan at the infusion center and those of us doing our injections were her idea. She wants other kids to know they are not alone and she wants adults to know that kids get arthritis too BUT it's a different type of arthritis. Jordan knows the difference between the type of arthritis her Granny had, osteoarthritis (OA) and the type that we have which is autoimmune. She also knows there is no cure. She knows more about this disease then any child should.

What started out as a page to keep friends and family updated had quickly turned into an all out awareness campaign. I will be posting information about juvenile arthritis as well as other forms of autoimmune arthritis. Several of our JA families have pages and blogs so we will be sharing those as well. There are 300,000 children in the US alone who live with some type of arthritis and that is simply unacceptable. As Jordan says, "Even if it takes ONE THOUSAND years, we WILL find a cure!"