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Month: March 2010

Have lupus? The Lupus Alliance of America needs your help

Have lupus? The Lupus Alliance of America needs your help

In the beginning of my illness, I was told that I had lupus. I immediately went home, cried, then read everything I could get my hands on. I was online reading medical journal material, lupus blogs, lab reference sites, everything and anything (except for sites with no reputation, and the ‘cure all’ sites, ugh).

I joined a support group for people with lupus and friends and family of lupies. We shared stories of pain, grief, frustration, triumphs, symptoms gone mad, remissions, and bonded because of a common link-chronic invisible autoimmune disease: lupus. I have never in my life met so many strong women. Of course when I got sick I felt very alone. I soon found out that there were thousands of women and dozens of men on this site who were going through, or had gone through everything I was experiencing. I learned how to stand up for myself at the docs, how to keep records and manage them, find out where to look for lab explanations and the many acronyms, and most of all I learned that I COULD survive this. I could even conquer it some day. After about a year and a half, I let go of that group. It wasn’t because I didn’t enjoy it anymore, or that the docs told me they didn’t think it was lupus. It was just time. As I was leaving, dozens more were joining. Each one as scared as I was that first day in the room.

I will always advocate for a cure for lupus. Whether I have lupus or not it has a place in my heart forever. It is such a devastating disease, and was one of the most overlooked.

Now lupus is finally getting out there getting talked about and people in the entertainment industry are advocating for research and a cure. Say what you will, but when famous people stand behind a cause, people listen. Lupus voices are being heard. And a new drug! The first one in 50 years!!! Can you believe that? 50 years. It’s just unforgivable that it was ignored for so long, but thank God there is a new medicine.

We should all keep talking and bringing awareness to this disease and other autoimmune diseases; Multiple Sclerosis, Ankylosing Spondylitis, Antiphospholipid Antibody Syndrome, Graves Disease, Chron’s Disease, Dermatomyositis, Meniere Disease, Rheumatoid Arthritis, Insulin dependent Diabetes, Mixed Connective Tissue Disease, Schleroderma, Myasthenia Gravis, Ulcerative Colitis, Cardiomyopathy, Addison’s disease, Vasculitis and many, many more.

I’m gonna stop here and just ask, if you have lupus or are a parent of a child with lupus, will you please take the survey? It’s put out by The Lupus Alliance of America, it takes about 30 minutes and it’s results will help them learn what people with lupus are in need of, and the data will help spread awareness and speak of what effects lupus has on the people with the disease. Remember, awareness is key. It’s not going to be able to be swept under the rug anymore. It needs immediate attention, more funding for research to find a cure. Check this statistic out, it’s from the AARDA site

NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).(AD: autoimmune disease)

You can go directly to the survey by clicking on the survey logo below.  At the bottom of the page is a link to the Lupus Alliance of America’s website.  Thank you.

Until next time,

2michelle


Survey

In the last ten years Lupus has finally started to get the attention the over 2 million Americans who suffer from it have long dreamed of.  From garnering special focus at the National Office of Women`s Health and the Office of Minority Health, to National Awareness campaigns and more research on lupus, and the development of new medications to treat lupus, those living with the disease are more encouraged than
ever before. But more work is yet to be done.

This is a very important time for lupus research and the Lupus
Alliance of America needs your help. To further the dream of greater public awareness, much needed government support and diligent research into the cause, cure and treatment of lupus, The Lupus Alliance of America, its affiliates and L.I. CW Post have designed a voluntary survey to help gather statistics to assist them in achieving those goals.

JC VanderPutten
Lupus Alliance of America

http://www.lupusalliance.org


Optimistic and Reconnecting

Optimistic and Reconnecting

the city2

I can honestly say these last few months have been pure torture. Pain, sickness, stress and depression. No exaggeration there.  And yet, I feel optimistic.  Why?  Because God is with me, and the rheumatologist at the teaching hospital ROCKS!!!  I asked him if he’d be mine, and he said yes!  My new rheumy I mean.  Big C approves 🙂  I’ve never had such instant access to a doc before.  In my experience, you call the office and they have a system of blockers.  The front desk, then the assistant.  You don’t get to speak to the doc him/or herself unless you make an appointment.  I might get some flack for that, but I was an assistant and we were taught that in school.  It is your job to keep the patients away from the doc so he can get through his day.  And I mean patients calling in, not the ones in the office, lol.  Docs are busy and they always have a full schedule.  So medical assistants are crazy-busy and work especially hard.  Next time you go to the docs, let them know you appreciate them. They do all the behind the scenes work that no one sees.  Stepping down from the soapbox.  Anyway-the hospital has an e-chart system.  I always said I would never want my medical info online and now I love e-chart.  You can see all of your test results as soon as they come in, you can email your doc with any questions, and mine gets back to me THE SAME DAY!  Wee hoooo!  OK, it’s been a while since I’ve been here so I need to get my thoughts together and pick up where I left off.

New Doc told us to email him as soon as my rash came back.  On our previous visit, I brought pictures of my hand rash, knuckle-red-scaly-yuck, chest rash and my legs when they turn all pink/red.  He already told us that it’s really hard to diagnose retroactively.  After seeing the pics you could see the wheels turning.  He told us that there are two paths to take with treatment; IVIG therapy if it’s dermatomyositis or ‘the next step’ if it’s RA, Still’s.  He said since I’ve already tried and failed with methotrexate and Imuran, it’s the next step.  I didn’t ask which med for the RA, I was overwhelmed with his efficiency.  I found out that when my muscle symptoms and rashes first started I could have had a muscle biopsy to find myositis.  Now, he says, I have plaquenil and prednisone in me for 3 years it would mask the results.  So I’m scheduled for an MRI of my femur.  That should show disease.  I’ve gotten set up with an ophthalmologist because of the double vision that I have.  Turns out the yearly and baseline eye exams that I read about when I started plaquenil really ARE needed.  My (old) rheumy said I didn’t need them, that the percentage of eye issues was so low. sigh.  So I’m getting checked for toxicity in my eyeballs.  I’ve got an appt. with the Derm to biopsy my rash, a bone density scan, and a neuro appt to rule out Myasthenia Gravis.  I’ve only lost my legs a couple of times and fallen down the stairs but he wants to rule it out.  I feel like I struck gold in the healthcare hills.  Bout time and I deserve it!

The hospital has a tram that takes patients from the top of the hill to the bottom.  And vice-versa.  It reminds me of the ride at Great America that takes you from one end of the park to the other.  Boring, but you take it anyway.  It was a beautiful day so I asked C to pull off at the vista spot so I could get some shots of it.  So we got out and I started snapping away with my soon-to-be-broken camera. yes, broken. and this was my point and shoot.  my Nikon D60 is laying in it’s bag, broken too…

weeeeeee
weeeeeee

I noticed when I was resizing this that there is a person on board and it looks like he/she is looking at me.  It looks kind of ghostly actually, spoooooookyyyyyy.


through the treees

This next shot is one of the tram but with many, many trees in the way.  Even though it goes along that wire pretty slow, I was panicked that I wouldn’t get a shot. So I kept my eye on the viewfinder while screaming over to C “where’s it at? Is it coming yet? Argghh, all I can see are trees!!!”  Good times.

Everything in our backyard is either blooming, budding or just screaming to be photographed.  It’s been driving me nuts so I’ve channeled that creative energy into editing my old photos.  I have a couple thousand on this computer but it only goes back a few years.  I have every great pic of my kids when they were younger sitting in a dead desktop comp on my closet floor.  But-I was visiting my dad a few days back and in his iPhoto are shots from the 90’s!!!  I almost started screaming, my kids! my kids!  Instead I said in a high-pitched squeal ‘Can I burn all of these on to disk?!?!’  He didn’t have his hearing aids in and I startled him, lol.

Alright, my eyes are blurring.  I’m on the 3rd day of a migraine.  This is a first for me.  I’ve had a weird head pain that lasted for months, but this is a true blue migraine.  I’m sitting here typing in my J-Lo pink glasses…Yah, I think it’s time to buy a new pair.  I’m coming back tomorrow.  I need to keep writing or I’m just going to isolate again, and I just can’t have that.

Until next time,

2michelle


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