Trying something different

So, here is something that I typically don't do. I am a firm believer in science and studies and PROOF that something works as far as my medical treatment goes. After all these years, and med after med after med, I decided to look into stones and the healing powers some believe they hold. I have ALWAYS been drawn to amethyst and sapphire. Once I started researching healing stones I realized out why. Of course, they're beautiful but now I'm wondering if there is more to it.

"Sapphires--

Known as the "wisdom stone", each colour of Sapphire brings its own particular wisdom.  It releases mental tension, depression, unwanted thoughts and spiritual confusion.  Sapphire restores balance within the body, aligning the physical, mental and spiritual planes, bringing serenity and peace of mind.  It stimulates concentration, brings lightness, joy and peace of mind.  Sapphire is also known as a "stone of prosperity", attracting gifts of all kinds and fulfilling dreams and desires.

Sapphire treats blood disorders, combatting excessive bleeding and strengthening the walls of the veins.  It is used for cellular disorders, regulates the glands and calms overactive body systems."

Interesting. "It is used for cellular disorders, regulates the glands and calms overactive body systems."

Most autoimmune diseases are caused by an overactive immune system. My AI diseases are a result of an overactive immune system.


"Amethyst--

Amethyst is a powerful and protective stone.  It guards against psychic attack, transmuting the energy into love and protecting the wearer from all types of harm, including geopathic or electromagnetic stress and ill wishes from others.  Amethyst is a natural tranquilizer, it relieves stress and strain, soothes irritability, balances mood swings, dispels anger, rage, fear and anxiety.  Alleviates sadness and grief, and dissolves negativity.  Amethyst activates spiritual awareness, opens intuition and enhances psychic abilities.  It has strong healing and cleansing powers.  Amethyst encourages sobriety, having a sobering effect on overindulgence of alcohol, drugs or other addictions.  It calms and stimulates the mind, helping you become more focused, enhancing memory and improving motivation.  Amethyst assists in remembering and understanding dreams.  It relieves insomnia.  Encourages selflessness and spiritual wisdom.

Amethyst boosts hormone production, tunes the endocrine system and metabolism.  It strengthens the immune system, reduces pain and strengthens the body to fight against cancer. It destroys malignant tumours and aids in tissue regeneration.  Cleanses the blood.  Relieves physical, emotional and psychological pain or stress.  Amethyst eases headaches and releases tension.  It reduces bruising, swellings, injuries, and treats hearing disorders.  Amethyst heals diseases of the lungs and respiratory tract, skin conditions, cellular disorders and diseases of the digestive tract."

Most of what amethyst claims to do, would be nice. I stress. A lot. I worry about things that I have absolutely no control over and never would in a million years. It's just who I am. 

"Relieves physical, emotional and psychological pain or stress.  Amethyst eases headaches and releases tension.  It reduces bruising, swellings, injuries, and treats hearing disorders.  Amethyst heals diseases of the lungs and respiratory tract, skin conditions, cellular disorders and diseases of the digestive tract."

Did you read that? Amethyst could help relieve tension, stress, headaches and PAIN. PAIN. 

Again, I am one who needs scientific proof that something works. So, why am I willing to give this a chance? Because I've lived my entire life in PAIN. Some days are worse than others and there were years where I don't remember having constant pain. I guess some could say I'm getting desperate or I'm giving up on traditional therapies. Neither are true. I'm willing to open myself up to different options. I'm not so stuck in my ways that I only see one answer anymore. Science and medicine haven't failed me or Jordan. I know without our current treatments we would be much worse than we are now. I asked Rick if he thought I was crazy for researching healing stones and he told me no. He said he's all for trying anything as long as we also stick to traditional medicine. We, Jordan and I, have changed our diet. I followed her lead. She wanted to go gluten free to see how her stomach felt. She did good. I know you are supposed to go totally GF to see results but we see them now. We know that when she has too much of something that she knows has gluten, she won't feel well. Her stomach will bother her and she knows she has the power to control that.

I've started eating more fresh fruit and vegetables. I don't eat much red meat to begin with so that really isn't an issue for me. I've been having GI issues for about 18 months now and my doctors don't know why. I've had test after test, but nothing shows up. Typical Stacey. They'll figure it out in about 10 years. In the mean time, I've lost over 30 pounds. 25 of that was before I changed my diet. Nothing has changed except my stomach hurts almost daily. I have to eat small meals, if I can eat at all. I drink mostly water these days. On occasion I'll have an adult drink or a coke but I can go months without it. I don't drink milk or have dairy often so it's not my lactose intolerance acting up. I believe my RA is attacking my GI system. I have no proof but, no one has proof it isn't. Tests mean nothing when it comes to me. "But your rheumatoid factor, CRP, ESR and all those other tests we do for RA are all negative. You can't have RA so I'll diagnose you with UCTD, undifferentiated connective tissue disease," said rheumatologist number one. Turns out that he gives just about all his patients that diagnosis when he can't figure out what's really going on. It's now well known that I do have RA, I just don't make the typical antibodies that are seen in the disease. In fact, 30% of RA patients don't which is why it takes some of us years to get an official diagnosis. Rheumy number 4 took a chance, looked at my family history and started me on Enbrel. It worked enough to prove I have RA but it wasn't enough so I started Remicade because J did so well on it at the time.

All this long babbling nonsense has brought me to this: 

I bought myself this heart amethyst pendant. It's not cut all fancy and it's not what you would find in a typical jewelery store. I was drawn to it as soon as I walked into the store. Is it going to help me feel better? I don't know. I wear sapphire daily and it hasn't done much to calm my overactive immune system. Or, maybe it has. Maybe I should be much worse or have severe organ involvement like others I know but don't because I'm always wearing my ring. The fact is, no one knows for sure. For $25 I have a pretty pendant that I like to touch because it is smooth. Which in turn, does calm me. Is it going to reduce my pain or swelling? I'd like to think it might.

Yes, May is Arthritis Awareness Month. Here's a bit about how our April ended and May is starting

I will warn you now. Some of you may get really sick of me sharing JA related stuff. However, this is a JA awareness page and you need to understand this is a lifelong disease Jordan has. There is no cure. I really, really hate to compare it to cancer, CF, T1 diabetes or any other childhood disease but the truth is, there is very little out there for kids with rheumatic diseases. Read the info on this page on the Juvenile Arthritis Association website.

  Disease*                              Prevalence*         Private Funding (Annual)*

Leukemia                            1 in 25,000          $270m

Juvenile Diabetes                 1 in 500               $198m

Muscular Dystrophy            1 in 10,000           $157m

Cystic Fibrosis                     1 in 2,500             $126m

Ped Rheumatic Diseases   1 in 250                $2m

*JAA



We get $2 Million in private funding for the most common childhood disease in the United States. Before you tell me this is not a serious disease, tell the mom who is currently fighting insurance BS to get her son the medication he needs to LIVE. I know too many children who have come close to dying because of a complication of systemic JA. Tell the parents who pray every time they see the eye doc that there is improvement in their child's eyes, that this isn't serious. Did you know that even with today's modern treatment, something like 10-12% of children with JA STILL go blind? This is not just a little pain. This disease takes the lives of children and makes them grow up WAY too fast. The proof is in my daughter. If you know her personally, you know she is not the typical 11 year old. She didn't ask for this life. It was given to her because she's strong enough to live it. She denies the pain and refuses meds unless it is way beyond her "normal" pain level. I witnessed this by another JA warrior, L, this weekend.

Juvenile Arthritis, the most common childhood disease, the least funded and no one knows about us.

Please consider donating to the JAA this month in honor of that JA kid you know and love. Or, in honor of the one you don't know about but lives with this devastating diseases. *1 in 250 children.* I guarantee you, Jordan is not the only kid you know with this disease.

As our April went out and May came in, we've spent hours at different doctors with Jordan. On April 19 I took J in to the ped, Her regular ped was booked so I agreed, once again against my better judgement, to see another doctor. I was told she was having asthmatic symptoms. That her inhaler and 5 days on prednisone would help. Day 5 was April 23.  Jordan was having trouble breathing AND the poor kid had a migraine that took away her peripheral vision in her right eye. She had numbness in her face and hand. Now, as uveitis parents, and a mother with APS, antiphospholipid syndrome, I immediately took her to urgent care. The things that were running through my mind were terrifying.

She missed her first choir performance because she was sitting in urgent care hooked up to IV fluids, antibiotics, benadryl and zofran. She was taken in as soon as we got there, labs were ordered, we  got the nebulizer going and IV hooked up all within 15 minutes.  Chest x-ray was done once she was a little more stable.

This may seem extreme to some, but this is the life of a family with juvenile arthritis. A doctor who believes a child may just have allergies or asthma but doesn't understand that something as common as that, can land a child like mine in the hospital. Thankfully, Jordan knows her body well enough to know when something is off. When she came home on Tuesday, she told me she needed to go to the doctor. When her vision started going, we were out the door in about 5 minutes. 

I can't say enough about doctors who don't think I'm a paranoid mother. I know my children and they know their bodies. I've been blown off by doctors who think I'm overreacting or that I WANT her to be sick. Yes, I want my baby laying in a bed hooked up to all these things, miserable. If you've never had to sit there with your child in the hospital, consider yourself lucky. I've done it a few times with both kids and it will never get easier.

As I watched Jordan finally sleeping peacefully I thought about a lot of things. Of course, WHY???? is always a big one. It's something I'll never know. Did I give this to her? Could it have been prevented? She is my little clone, so of course, I think about how alike we are and how many diseases we have in common. Then, my thoughts turn to the other JA kids who are in the hospital for weeks at a time. To Jess, who is this AMAZING young lady who can't catch a break to save her life. Jess is who I want Jordan to be like as she gets older. She's determined to make a difference in the world. I believe she will. Em, Dakota, Parker.... the list goes on and on and on but you don't know that because there are no telethons for JA. There are no sad commercials for OUR kids like there are for the kids at St. Jude. I know children who have cancer and I know families who have lost their child, and I'm not discounting their disease. NO CHILD SHOULD HAVE TO SUFFER DAILY OR LOSE THEIR CHILDHOOD TO ANY DISEASE. THEY ALL DESERVE A CURE.

Remission is possible but not likely for Jordan because she was treated so poorly in the beginning. Her labs look amazing, eyes are clear. The little ones I know, are in medicated or UN medicated remission. The older kids like J, not so lucky. Early and aggressive treatment is KEY and I've seen that with my own eyes. E and Bev are doing great. They were put on MTX almost immediately. Here we are a few years later, both girls are weaning meds. Am I jealous? A little. See, Jordan was the same age the girls were when they were diagnosed. Had Jordan been treated by a competent pediatric rheumatologist from day one, perhaps she'd be in remission too. When Jordan's eyes became involved it's a no brainer to add systemic meds. Of course, hindsight is 20/20. 

We end our April at an amazing event hosted by Teri Hatcher, her Celebrity Yard Sale. Jordan was well enough to go AND work a booth! She kicked butt! Jordan met 2 older JA girls and they gave Jordan HOPE that she will still be able to be whatever she wishes to be in the future. And she won't be short ;)

Recognize anyone? 
L to R
Me, Katie, (JA advocate), Mel, (fellow RA bada$$ and meetup.com SoCal Rheumatoid Arthritis and Autoimmune Support Group leader) Teri Hatcher, Britt, (TheHurtBlogger) Alexa, (fellow JA advocate)
Jordan, (you all know) and Brielle. One of our friends who came out to support Jordan!

Jordan and Teri!

 Mel, J and Britt

We even put Matthew to work!

Some of the best gimps, volunteers and friends a girl can have. I will never be able to tell you how much it meant to me to have you three come out. I'm missing a few in this photo, Katy and Jena, You know I love you guys and I would be LOST without both. 

Matthew and Teri

 Matthew and Jena, who finally graced us with her presence ♥

Me and my Bub. The best son a mother could ask for! 

And that guy standing behind me in the black LA Kings shirt, that's my husband. He worked his butt off all day too and had to be nice to people ;) My aunt and uncle also came out and worked from 7 to 7. As did my friend Heather, Brielle's mom. I know there are a few who really wanted to be there for us but were unable to make it. Don't worry, this was just the first event. I will be harassing you again :)

This was the first BIG event for JAA and I'd like to say it was a success but I don't know for sure. I do know that I took every chance I had to educated someone about JA. As did Matthew. 

This is the result of being on my feet all day Saturday. I'll do it again, and again, and again until there is a cure.  

Again, thank you for everything. All the prayers as J was sick, all the help on Saturday and always keeping out family in your thoughts and prayers. Off to begin out May at the doctor to see if J's lungs are clear so she can have her infusion on Monday! YAY!!!

Things About My Invisible Illness(es) -- April 2013

I originally posted this blog back in November 2009 but, I thought it was time to update it now that I'm a few years in to what were new diseases and meds back then. Since posting the original blog in 2009, I've had a few new things added to my bag of tricks because my body is SO awesome and it feels it must be an overachiever. 

 If you don't know already know, autoimmune diseases are a result of one's immune system attacking healthy tissue. That includes joints, the eyes, major organs, hair, skin and connective tissue in ANY part of the body. 

For a list of Autoimmune and Autoimmune-Related Diseases, visit The American Autoimmune Related Diseases Association, INC. 

https://www.aarda.org/research_display.php?ID=47

Things About My Invisible Illness(es) You May Not Know

All of my newer issues are in red. Some of my original diseases, like UCTD, have become more defined as the years have gone on.

1. The illness(es) I live with: Interstitial cystitis, adenomyosis & ovarian cysts (hystererctomy 2 months after I turned 34), antiphospholipid syndrome; AKA APS or sticky blood, (undifferentiated) connective tissue disease similar to lupus and RA. In October 2010 I was diagnosed as sero-negative RA. Lupus markers have come down, a lot! We've added firbomyalgia and Raynaud's in the last 2 years.

2. I was diagnosed with it in the year: 2009, and we're still counting in 2013

3. But I had symptoms since: the age of 8-10

4. The biggest adjustment I’ve had to make is: remembering to take all my meds and to stop when it hurts. And telling people no!!

5. Most people assume: I am just fine or faking it.

6. The hardest part about mornings are: getting out of bed.

7. My favorite medical TV show is: Mystery Diagnosis

8. A gadget I couldn’t live without is: my computer, phone

9. The hardest part about nights are: not being able to sleep because I can't get comfortable and waking up several times because of pain.

10. Each day I take about 15-16 pills & vitamins. PLUS, a weekly methotrexate injection and Remicade infusion every 4 weeks, just to keep walking.

11. Regarding alternative treatments I: if I had the extra money I'd try anything to feel better. And I'd do the same for Jordan.

12. If I had to choose between an invisible illness or visible I would choose: invisible -- I can fake looking and feeling good really well when I need to.

13. Regarding working and career: not sure if I could go back to work at this point. I won't be going back to work

14. People would be surprised to know: I feel alone often.

15. The hardest thing to accept about my new reality has been: this is it. This is my life now.

16. Something I never thought I could do with my illness that I did was: ?????

17. The commercials about my illness: Flat out piss me off. None of them are accurate, you can't just take a pill, a shot or sit in an infusion clinic for a few hours a month and magically be cured. These may work for some people but for the majority of us, it's not even close. 

18. Something I really miss doing since I was diagnosed is: walking without some degree of pain, but this has been going on for years and years. I miss the beach weekends more than anything.

19. It was really hard to have to give up: being in control of everything

20. A new hobby I have taken up since my diagnosis is: nothing so far!

21. If I could have one day of feeling normal again I would: spend it playing with the family.

22. My illness has taught me: No one is safe. Young, old, we're ALL at risk.

23. Want to know a secret? One thing people say that gets under my skin is: "If you'd get out and exercise more...." " My ______ has arthritis, too. S/he took _____ and was cured. You should try it." I really do appreciate the well meaning advice but unless your cousin's, best friend's, great aunt had an *autoimmune* disease that causes arthritis and the other issues I have, I doubt their treatment will help. 

24. But I love it when people: help when I really need it. Our neighbor has been wonderful on the mornings I can't get the kids to school.

25. My favorite motto, scripture, quote that gets me through tough times is: I just look at my Peanut. If she can do this I can too.

26. When someone is diagnosed I’d like to tell them: It's overwhelming and scary but you will be OK. Contact me, I'll get you in touch with others in your area going through the same thing.

27. Something that has surprised me about living with an illness is: how many other people have the same issues I have.

28. The nicest thing someone did for me when I wasn’t feeling well was: take the kids for a few hours so I could rest. During my last flare, where I had no idea what was going on, some friends called, sent messages or contacted Rick to see if I'm OK after not hearing from me for a few days. No one has ever done that before.

29. The fact that you read this: means you want to know about what's wrong with me :)  Or you're bored and have nothing better to do! 

Good days

Not so good days

A birthday, an infusion and the beach

Well, she's 11. It doesn't seem possible but it is. It took so long for her to get here and now the years are flying by.

Jordan ended up celebrating her birthday pretty much all weekend. Rick had to work Monday, her birthday, so we had dinner with my Mom, sisters and their kids on Saturday. We gave Jordan the option of having a party or giving her the cash that we would have used on a party. She opted for the cash. Between what we gave her and what she received as gifts, she was able to buy herself a little netbook.

On Sunday we celebrated with Rick's Mom and Grandpa. More gifts! Monday was her birthday. Much to her surprise the birthday fairy, AKA Mommy, had a few little things for her. Then, when we got to the clinic for her infusion, one of our JA friends had brought a gift for her as well  :)

Jordan's infusion could have been better. She was poked twice, there were issues with her line and she just CRASHED. That's not normal for her. I do think part of it was because when we left in the morning, I grabbed the Benadryl without checking to see if I had any cut in the bottle. Jordan takes half a tab, 12.5mg, before her infusion. She can take a full 25 but she's never had a reaction and we, Dr.G and I, decided to keep her at the lower dose unless we needed to up it. She's gained weight, up to 65 pounds now!, so the full 25mg doesn't hurt her but it seems to zonk her out.

When we left the clinic, Jordan was very moody. Matthew was with us and that didn't help. He was bored and starting to get very annoying. We were on our way home when one of the kids asked if we could go to the beach. I debated because of how Jordan was. But the car seemed to magically veer to the right to the 101N toward Ventura, or as the kids call it, "home."

We went to our favorite park on the beach. The kids played, we walked along the dock, went to In-N-Out for dinner then headed back to the beach. Apparently "Only get your feet wet." is kid for "Go ahead, play in the water!" Since this was an unplanned trip, we didn't have extra clothes or towels. They were cold so we headed home around 6:30.

Overall, Jordan had a pretty good birthday. 3 days of gifts will make anyone happy! Top it off with a trip "home" and I had a very happy girl.

J and one of the therapy dogs, Dreamer, that comes in every Monday. 

And, my zonked out Peanut.

One more thing, her labs that were drawn on Monday, are perfect! 

Her liver enzymes are still a little elevated but they're not too bad.. But all her inflammation markers are within normal range. This is the first year, since diagnosis, that her medical issues have been quiet around her birthday. Hopefully this is the first year of many!!!

FINALLY!

It’s March. Jordan’s 11^th birthday is in 4 short weeks. For the last 8 years we’ve never had any good news come her way this time of year in regard to JA or uveitis. She was officially diagnosed 8 years ago THIS week, right before she turned 3 years old.

That changed yesterday.

Jordan has been doing really well for a while now. I’m always cautious because with her history, she will go from good to bad in a matter of days just like a lot of other JA kids. Her uveitis has been quiet for 9 months; joints have looked really good for about 6 months. She’s had some minor swelling in her knees here and there but it’s been linked to her level of activity on a certain day or a fall. Morning stiffness is still there when it’s been real cold, and that will never change, but it only lasts at most about 45 minutes.

I’m sure you’re wondering if we heard that magical “R” word yesterday. The answer is a bit complicated. About 2 months ago we decided to lower her daily CellCept dose by 250mg. Jordan, on her own, stopped taking her other daily med, plaquenil. Don’t worry, we had a long talk about stopping meds without doctor input and I have taken away her being responsible for her own meds. Anyway, her eyes didn’t go crazy and she had no swelling. Her body did great. Based on monthly labs, her eye exam on Thursday and yesterday’s physical exam, we are lowering her CellCept by another 250mg. This brings her to 750mg a day. If she continues to do well, we will decrease her another 250 at the end of April. That will give her body time to adjust, 2 rounds of labs and an eye exam. If she flares, she’ll be back up to 1000mg. The only prescription meds she is currently on are Orencia, CellCept and as needed, mobic.

If you’ve followed Jordan for a few years you know that while she isn’t as sick as some other kids with JA, she has had several challenges. I think in 8 years she has only had a few times when her diseases have been inactive but it only lasted 2-3 months before something went off. She’s battled so many infections due to the immune suppressing meds she needs to keep her JA and uveitis in check. Physical therapy, eye drops, shots, blood draws, nasty, NASTY prednisone, way too many failed meds, daily pain for YEARS have all brought us to where she is now. While I want to say she is in medicated remission, it really is still too early to tell. But we am cautiously optimistic that she is headed that way. And if you know me at all, you know I just typed that though tears.

I know there hasn’t been any activity on our blog since October. There is a reason and I will go into that another day. Right now I wanted to share our awesome “birthday” news. 

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. 

"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.

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.

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!!!

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.