Lupus/Fibro Support Group

If you read my blog or know me personally, you know that I have 3 incurable diseases; lupus, fibromyalgia and sjogrens syndrome (scroll down for descriptions and symptoms).  I’m talking again about them today because an acquaintance and I are starting a support group for these diseases, or anyone with another chronic pain disease, in Phoenix. The first meeting is this Saturday. It seemed appropriate to talk a bit more these diseases to raise awareness and possibly have the blog find some people who could join us this weekend.

Information about the support group meeting:  August 13th, 10 a.m at Wildflower Bread Co. on Litchfield/McDowell in Phoenix, AZ.

It’s sad to say but there are no support groups in Phoenix. None that I have found and I have actively searched for 2 years. The Lupus Foundation of America had a state of Arizona chapter which has been shut down.  In the time I have been in Phoenix the only things they had done were a fund raiser at a clothing boutique and a  “Run for Lupus”. Really? Are you serious? We have joint problems, fatigue  and a sensitivity to sun exposure. And you want us to run five miles in the Arizona heat? Ok, so they raised money a couple times a year for the foundation. great. but what were they actually doing for the patients? There were no support groups assembled by the foundation. It kinda pissed me off.

I kept comparing Phoenix to the bay area, where information, studies, support groups, and Doctor seminars were common. Every month there were at least 3 different things i could attend for information, or to ask questions, or just to talk. So some of them charged, but who cares.  15 bucks to hear a medical professional give me detailed information about all the latest news about the disease that reeks havoc on my immune system and has the potential to kill me, i’d damn well pay for it. I couldn’t believe that in a city this sized no one in the medical field took any kind of initiative to help out patients with the kind of problems and symptoms we face.

I finally got fed up with the lack of help from medical professionals. I really wanted to talk and relate with people who know what it feels like to be tired and in pain all the time. Not the fatigue of stress or working to hard. No. Unless you have one of these autoimmune diseases you cannot relate to the way they make you feel, physically or emotionally.  We all try to help our loved ones understand but in the end you really dont. It’s not because your dense, it’s simply because you’ve never been through it. Your mind trys to relate therefore you go “yeah i get headaches all the time too’. Thats nice but do you have one that never goes away? Of course we dont say that, but were thinking it. But people that have these diseases too know immediatley what your feeling as soon as you describe your day. You dont have to elabroate, they simply know. Its a great feeling even under the crummy circumstances. But i’ll try again for you to give you an idea, its broad but good enough to emphasize what our lives are like.

The best way to describe a typical day: Imagine the last time you had the flu. Remember that full body ache and the muscle weakness, how tired your brain felt? Not to mention the tiredness, the desperate need for sleep. Forget about the runny nose and cough. You can keep the sore throat, headache and chest ache, a lot of us have that daily too. Now, a week of that isnt horrible right? you start to feel better and the world moves on. Imagine 2 weeks of that, a month, 5 years. Constant. Symptoms ease or assault you, every day is different and you have no idea what it will be when you wake in the morning.  Some days you can push through it, its still there but not so bad. Thats a good day. The next day you can’t get out of bed.  Your body is attacking itself, the flu is in full force, if you will. Thats a bad day.

Like I said, its a general description but the point is, its  constant. All the symptoms by themselves and in small doses are easy enough to deal with. Try mixing them together and having them all day, everyday, all month for a full year. It wears on you heavily after a time. You either learn to deal with it any way you can or it begins eating at your life and making a mess of it.  I knew there are plenty of people in the valley that are going through the same things as me and need an outlet so they dont feel alone. Online support groups only go so far. And finally i said ‘to hell with the medical community’ I’ll try to do it and see what happens. Even if there are only 3 of us there, it’s a start. So here we are. Come on come all! lol. Just come. If you know someone with a chronic pain disease, tell them to come. Were not discriminating. Want to bring a loved one, no prob. Just come. We all need someone to talk to about it.

A bit about my diseases:

Lupus: Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Fibromyalgia: is a medical disorder characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure. It is an example of a diagnosis of exclusion. Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition.

Sjogrens Syndrome :is a systemic autoimmune disease in which immune cells attack and destroy the exocrine glandsthat produce tears and saliva.

Some symptoms of the above diseases that typically occur daily for a lot of people who have them:

  • extreme fatigue (tiredness)
  • headaches
  • painful or swollen joints
  • fever
  • anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
  • swelling (edema) in feet, legs, hands, and/or around eyes
  • pain in chest on deep breathing (pleurisy)
  • butterfly-shaped rash across cheeks and nose
  • sun- or light-sensitivity (photosensitivity)
  • hair loss
  • abnormal blood clotting
  • fingers turning white and/or blue when cold (Raynaud’s phenomenon)
  • mouth or nose ulcers
  • a dry, gritty or burning sensation in the eyes
  • dry mouth
  • difficulty talking, chewing or swallowing
  • a sore or cracked tongue
  • dry or burning throat
  • dry or peeling lips

All of these symptoms are the basic everyday symptoms for a lot of us. There are extreme health issues that are also there lurking in the shadows like kidney failure and blood clots. 15 years ago, being diagnosed with Lupus was still considered a death sentence.  Not long ago medicine was found that can help suppress the worst of the disease from shutting our organs down. An anti- malarial drug sadly keeps most of us healthy. The first drug to ever be produced for Lupus just came out this year and costs about 30k a year, even with insurance. The anti-malarial drug costs me 2 bucks a month.  At least the medical community is doing some3thing about it. Research is going on and people are shedding light on the these diseases.  Maybe one day they’ll even find the cause.

For those of you who know someone with an auto-immune disease, please remember why there also called ‘invisible’ diseases: they are easy to hide. Almost all the symptoms are internal. We become masters of putting on a good face to fool ourselves in to feeling good for a few hours. Our symptoms are still there under the skin but we ignore them for a time, then shut the door and sag to the floor in exhaustion.  The symptoms are always there under the skin but invisible to you.

For those of you reading with chronic diseases and those who don’t: take a minute to take a deep breath, let it out slow and smile. Tomorrow is another day.

” Love yourself – accept yourself – forgive yourself – and be good to yourself, because without you the rest of us are without a source of many wonderful things.”  ~Leo F. Buscaglia~

Duh.

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4 thoughts on “Lupus/Fibro Support Group

  1. Love this description. I plan on “borrowing” it to pass on to family members and friends here in Louisiana. Unfortunately Arizona is a bit far for me to come! lol … But I will be checking in on your posts from time to time. If you haven’t already looked at it, there is a fb page called Fibromyagia Funhouse. It’s pretty good. Thanks for becoming proactive for the rest of us!

    • Thank you for reading! And feel free to use what you can. I know how hard it can be to find the right words to describe things in an efficient way they can relate to. I’ll certainly check out the fb page!
      cheers!

  2. kudos to you for starting your own group! I did this myself back in 94 when i was recovering from my first bout with lupus, and it helped a lot. Our group was snot affiliated with any organization so we could do whatever we wanted. it was really nice. And I had to LO about the run for lupus. seriously?! i’ve had the same thought. and at the crack of dawn, like a few hours after most of us have finally managed to fall asleep. yeahhhh, right. Cheers, my friend, and keep on being you. great post.

    • Thank you Carla! Any advice on running meetings? We’ve have a long list of topics to move conversations but we havent development any further then that. But like you we dont plan to affiliate with anyone so that we can do things that the group wants to do. Any fun exercises/games or fund raiser ideas, etc etc advice?

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