Sunday, May 5, 2013

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.

Friday, May 3, 2013

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!!!