Wednesday, October 3, 2012

It's October.

I will start by saying, if you are offended by breasts, don't read this. Just close the page.

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I haven't really updated in months for several reasons. The main one being J is doing really well. I'm up and down but that's just the way I am.

I decided to post today because it is October and as you all know October is breast cancer awareness month.

I'm not going to go into my scare but if you'd like to read about it, it's here.

Today I spent much of the day in bed thanks to my chemo shot, methotrexate, I get every Tuesday.  I won't debate the whole, cancer patients go through so much more than someone with RA/lupus/JA thing. My Dad is currently undergoing his fourth round of chemo. I know what it's like! Just because I don't get the same dose at one time doesn't mean it isn't chemotherapy. It is, and it sucks and it makes me sick.

Anyway, today I kept thinking back to the conversations I had with Granny over the years. She made me promise to get any and all breast lumps I ever found checked. I kept my promise. If you read about what I went through in January you know that everything looked good and that my follow up in July showed that the cysts are all back but the mass they found has not grown.

I decided to share a few of the photos I took right after the procedures. They are edited and honestly do not show how bad I bruised. This is NOTHING compared to what women with breast cancer go through. I had 1 biopsy and several, like 10, cyst aspirations but that is nothing when you are faced with loosing your breasts. I am thankful that my biopsy came back OK but I know a mom, my age, who went through this same thing a few months before me who needed a double mastectomy I believe right before Christmas.

Cancer sucks. It doesn't matter what kind it is. It's a horrible, horrible disease and none of us can say that we don't know someone who is currently fighting, won or lost their battle.

There isn't a day that goes by that I don't miss my Granny. She fought a long battle but in the end breast cancer won. She stayed long enough to see Rick and I FINALLY get married, she met her great grand kids and she had a strong bond with both of them. I wasn't her granddaughter "in law". I was her granddaughter. And I miss her. 

Friday, July 20, 2012

"Jordan has Juvenile Rheumatoid Arthritis."

In February 2005 those 5 words changed our world -- Jordan had the official diagnosis. I had no idea what JRA really meant or the fight J would have just to be a normal kid. I believed our first rheumatologist, and everyone else, who said she would be fine in a year or 2. Well, we are now in 2012 and Jordan is in her seventh year of this disease. Guess what? She wasn't fine in a year or 2.

In 2008 we did our first Arthritis Walk and I started this blog. The blog was intended to keep family and close friends updated with what was going on with J. Little did I know that 2 of ladies I would come across by chance, just by searching for other JA/uveitis blogs, would become family to me.

I don't remember who I found first but Amy and Joanne are 2 fellow JA/uveitis moms. I followed both blogs for quite a while before we found our way to a JA support group on Facebook. We've made new friends over the year via our blogs, Facebook pages and private groups but there we have a core group of JA moms that have become sisters. We vent, celebrate our kids JA victories and set backs. We laugh, we cry and we make fun of some silly southern sayings. Those of us who are within driving distance see each other as often as possible and those of us who aren't, talk or text just about daily. 

This week is the annual Arthritis Foundation JA conference. Every year I say, "We'll go next year." Well, that has yet to happen. Until this year. Thanks to my awesome, wonderful, ever so funny sisters, I'm there. Kinda. Someone had the brilliant idea of bring "flat" versions of those of us who couldn't make it to St. Louis.


Throughout the conference we are getting photos of our flat selves seeing the sites, having dinner and participating in the conference.

Here is flat Stacey at dinner last night

 
See, even flat Stacey takes her meds! 
 

If you really know me, you know how much something so silly means to me. Every time I look at these photos, I cry. Apparently flat Stacey cries too because her face is a mess ;)

I love you girls.

Wednesday, July 18, 2012

The "Old" Me

Summer is here. I have a love/hate relationship with summer. Usually summer is miserable for me. I swell, I hurt and I'm generally very, very grouchy. This year I was hoping things would be different. So far they are.

A month ago I had extremely swollen feet and I was unable to walk. My hands and hips hurt so I was needed pain meds and  muscle relaxers pretty much 24/7. I had my second upped infusion on 6/20. Within a week I noticed I didn't need the meds. Over the next week or so my swelling went down. As of last week, my swelling is GONE. I have some mild swelling in my right ankle when I'm on my feet all day. That's it.

My feet, 6/11/12 (By the way, this is the day the LA Kings won the Stanley Cup)



Last week I decided to take the chicklets to the beach. Totally random, spur of the moment type thing. We tried going to our usual beach but it was crowded. I decided to go further north to the beach Rick and I started going to about 13 years ago. There is a long path/trail heading down to the beach at a pretty steep incline. I didn't have a problem with this walk before getting sick. But after, it became almost impossible for me to do. 

I went from those feet, to being able to walk a couple of miles and climbing rocks at the beach in less than a month.


It's the very small things that I get excited about. Things that I haven't been able to do in years that I can do now make me so very thankful for our current medications. I've got a little part of the old me back.

Saturday, June 16, 2012

Boy Scout troop 621's PSA about Juvenile Arthritis

A dear friend of ours sent me this video. Boy Scout troop 621 put together this PSA about juvenile arthritis. In order to get credit for the video, they are trying to get it posted on different blogs or websites. Please SHARE!!!

Friday, June 1, 2012

May

May has been a crazy month for us. We had a several medical appointments between the kids and I. Matthew had his tube removed, Jordan had her normal rheumy stuff and an eye exam. The eye exam didn't go as well as we hoped. Jordan has cells in her right eye. She's at a 1+ so it needs to be treated. We go back on 6/22 to see how things are. If she's clear, we can finish the drop taper. If not, we'll need to make some changes to her systemic meds.

One of the newer meds Jordan is on is called plaquenil. This is a very old med that was originally used to treat malaria. Overall, plaquenil is a pretty safe med. Some people don't tolerate it well and have stomach issues. Jordan and I have had no problems with it at all. Plaquenil has been wonderful for me as far as my rashes go. And for Jordan, it seems to have given her body that extra boost to kick her JA. Yes, you read that right. JORDAN HAS NO VISIBLE SIGNS OF JA. Her joints look perfect. But, there is that pesky uveitis hanging around. Her inflammation labs came back elevated but that could be because of the uveitis. The eye flare isn't anything major so we aren't sure if that is what is causing her labs to be elevated. They aren't super high but after last months labs being close to normal, this isn't good.

So, for now nothing is changing. When we go back in June to see Dr. G, if her eye/s are still flaring, something will be changing. Dr. G did say that Jordan has gained weight, which in itself is HUGE, so just increasing her CellCept might quiet her eyes.

Today we will be heading back to the opth for a vision check. I take the kids every year for a vision screening but because J is now on plaquenil, she must have her vision checked twice a year. One of the rare side effects from plaq is hydroxychloroquine (plaquenil) retinopathy. I'm not worried about it, but J will now be getting her eyes checked twice a year, just like me.

Overall Jordan is doing really well. She says she feels the best she's felt in a very long time. Her energy is back up, she's not asking for pain meds or asking to soak in the tub. Her swelling is gone and we can start weaning her off of pred. It's going to be a slow wean since I had issues last year but I'm hoping she will be off by time school starts again in August.

These are a few pics from the walk in LA on May 19. Jordan was interviewed TWICE, once by the National Arthritis Foundation and once by our local CBS station.




This is our friend Jena. A year ago Jena started a local support group for people with lupus, RA and fibro. Our family instantly bonded with Jena. She's been a blessing to me but I am most thankful for the bond she has with Jordan. I think seeing what Jena has accomplished with RA and lupus has helped Jordan realize that even if you are sick, you can still change the world.  


Friday, May 25, 2012

My Bubby

It's always hard to write when I haven't written anything in a while. I think I take long breaks sometimes because I need a break away from all medical stuff. This week was one of those weeks where we had back to back appointments. And next week is the same.

Thursday Matthew had to have a minor procedure done on his ear. He's one of those kids who suffered from constant ear infections pretty much his entire life. He had 2 sets of tubes put in at age 2 and again when he was 4. After a while, the tubes are supposed to fall out. That didn't happen. Well, I take that back. The right tube on the set he had placed when he was 4 did come out on it's own about 2 months ago. The left wouldn't budge. Our wonderful  ENT tried twice to get it out but it was stuck. So, Matthew had the tube removed in the OR. He wasn't happy about being there but he did great! Now we hope and pray that he doesn't end up with infections again!

Before we did anything, I put emla on him. He's not afraid of needles but I thought it would be best if I numbed him up. The nurses we not happy with me and a few questioned where I got the emla. I told one I had a prescription for it and she left me alone after that.


It doesn't matter how many times your baby goes in for surgery, it's never easy. Thankfully Matty was not combative when he woke up. 


Matthew woke up enough to have a Popsicle, some juice then we headed home!


He was fine today. Running around playing like nothing happened. He s saying it hurts to breathe a little and his throat is sore but  don't know why. They didn't tube him because everything went so well, so fast.

I'm happy this is over with. Summer will be here before you know it and he'll be wanting to swim. Dr. T said he's good to go in a few weeks. Just in time for school to be out!

Wednesday, April 4, 2012

I write about my health because…


Wednesday, April 4, 2012

 As I sit here with Jordan hooked up to Orencia, I remember why I started this blog. When she was diagnosed in 2005 I remember feeling totally lost, confused and alone. I had no idea that kids could get arthritis. 6 months later Jordan’s eyes became involved.  I knew it was possible but I didn’t think it would actually happen. She was supposed to “grow out of” JA in a year or 2. When her eyes started in her rheumy reassured me that she still had a mild case of JA and that the eye involvement wasn’t really serious. Of course now I know different.

In 2008 I decided to research more and I set out to find other families like ours. I wanted to hear first hand what exactly we were dealing with from parents who were living with the diseases. I stumbled upon a Yahoo! forum but I didn’t feel like I belonged. I’d ask questions but often didn’t get a reply. I learned a lot just from reading the Q and A from the core group. I realized that J was being grossly under treated. The fact that her eyes were in a constant flare didn’t seem to bother her rheumy or opth. They both felt that her uveitis would eventually “burn out” and she’s be fine. No lasting affects. Well, no such luck. We’re now of year 7 with the JA and 6 ½ with uveitis. She has damage in her knees and eyes.

I’ve learned so much about our health and how you need to advocate for yourself. You MUST go with your gut if something feels wrong. Because I didn’t follow my gut, Jordan will suffer with the lasting affects of her disease. Had she been treated properly in the beginning, I don’t think we’d be where we are now. 

I’ve had people contact me through Facebook, YouTube, Twitter and via this blog. At least once a week I have someone telling me that are glad they found us because they felt alone for so long. That’s exactly why we blog.   

Superpower Day


Tuesday, April 3, 2012

If I had a super power for a day, I would fly. I would fly because I think it would be really cool and people might call me Superman , LOL!

In the middle of the night I would sneak out of my house, I would go up into space and touch a star.

Jordan, 10

Quotation Inspiration


Monday, April 2, 2012

“I have this thing called psoriatic arthritis….”
                                    Phil Mickelson for Enbrel

If you know me, you know how much I hate care for this commercial. First let me say, IF this drug really works for him, that’s great. He’s one of the few who I have talked to who responded to Enbrel. I wonder what other meds Mr. Mckelson is on because these type of meds work best when used with a disease modifying anti-rheumatic drug, DMARD, like MTX.

One of the things that bugs me most about this is the fact that this commercial downplays the severity of autoimmune (AI) arthritis. It shows Mr. Mickelson out playing golf like he always has. If you live with AI arthritis, you know life isn’t so easy. Just getting out of bed in the morning isn’t easy. There are days where I need to take pain meds just to put my feet on the floor.

I wish people in the public eye would use their celebrity to show the world the REALITY we face day in and day out.

Sunday, March 18, 2012

Its been a while...

 I know, I know... we're half way through March and I haven't updated since the first week of February. There hasn't been anything positive to update about so I decided not to blog.

Those of you close to us know Jordan isn't responding well to Orencia. She saw the opth on 2/22 and her right eye was flaring. Left had a few cells but not like the right. She had her third Orencia infusion on March 6. Her labs were also done at that time and her inflammation markers doubled in 4 weeks. And, she's on prednisone. This is not like J at all. Prednisone has always been able to keep things under control.

During the last infusion J did something she hasn't done in almost a year. She reached for my hand when the nurse started her IV. She was kinda off at this appointment. Very quiet and reserved. Not typical Jordan.

Over the last 2 weeks she has decided to fight me about meds. She doesn't want to take them anymore. After 7 years, I don't blame her. She does this every once in a while and usually I let her go a few days but with her labs a mess and her eyes, I can't allow it this time. While she understands a lot about her diseases, I don't think she fully understands what can happen when she stops her meds suddenly. Especially prednisone. Even a slow wean off prednisone, like I did last summer, can go very, very bad. 

I'm not sure what our next move is going to be. She goes back for to check her eyes on Thursday. I'm hoping she's clear but I know how this disease works. We are tapering eye drops right now and she's down to 1 a day. I'm hoping the left eye didn't decide to flare up.


Through all this, she still smiles.  




Sunday, February 5, 2012

Hearts for Heroes

I think this is pretty self explanatory!






Looks like we're on our own

Over the last couple days there has been a huge amount of disappointment in the JA community. Someone who wants to be a voice and advocate for us won't show the negative side of the disease that Jordan and 300,000 other kids in the US live with. She only wants to see smiles and happy faces. That's fine if you want to keep the stigma that autoimmune arthritis diseases like RA, JA, PsA and lupus aren't serious.

A few other parents have reached out to try to get an explanation as to why she won't show how our life really is. We've all had the same type of reply, it's not what the media wants to see. "I have worked my entire career in the media. I know for a fact that if I start showing all the negative sides of arthritis I will NEVER get any attention for these kids or be able to change the stigma attached to arthritis." Yesterday I got, "I guarantee if I do what this community is asking, there will be no more national segments." Several of us don't believe that.

Today, Super Bowl Sunday, one of the first commercials shown during the pre game show was a commercial for The Ronald McDonald House Charities featuring three year old Anastacio, a leukemia survivor. That brought me back to one of the questions I asked, why does St. Jude show sick children? Their commercials show children being wheeled into the OR and bald from chemotherapy. When you hear the St. Jude telethons, they tell the REAL stories of the patients they help in order to get support from the public. The stories touch hearts and that opens wallets. The money raised during these telethons is used for research or programs for families and patients. Yes, we have the Arthritis Foundation but they don't show the truth about RA or JA either.

Why can other diseases show the real daily battles, but those of us with RA have to hide ours? Why are celebrities ashamed to show our real stories? 



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!"