Tag Archives: autoimmune

AutoImmune Disease Awareness

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March has been named National AutoImmune Disease Awareness Month!

This is so close to my heart since I am passionate about spreading awareness.  It is the reason I started writing here.  We have to raise awareness and educate people.  The more we bring AutoImmune Disease into our national dialogue the more attention it will get –which means funding for research and eventually finding cures and/or prevention for these terrifying diseases.

“Today, fewer than 13% of Americans can name, unaided, an autoimmune diseases.This is staggering when one considers that there are 100+ known autoimmune diseases, all of which are chronic, many life threatening, and that as a category, autoimmune diseases are one of the top 10 killers of women under the age of 65. With the designation of March as ‘National Autoimmune Diseases Awareness Month,’ we begin to focus national attention on this issue, and it’s long overdue,” says Ladd.

According to the American Autoimmune Related Diseases Association (AARDA) here are some things we can do to spread awareness:

1. Be aware that autoimmune diseases target women; 75% of patients are women.
2. Know that autoimmune diseases tend to cluster in families. If your mother had rheumatoid arthritis and your sister had Crohn’s disease, you could be at higher risk than usual.
3. Autoimmune diseases are on the rise in the U.S. and around the world, celiac disease has tripled in the past 10 years in Minnesota alone.
4. Because of lack of early diagnosis and onset of treatment, healthcare costs for autoimmune diseases are overwhelming for patients and the healthcare system.
5. Everyone should know the facts about autoimmune disease.

Please spread the love.  It can be so simple… you can feel free to share my story with one or two people that you know this month.  There are so many like me who may not have a voice.  So many (mostly women) who have been treated like hypochondriacs and often don’t find a diagnosis for their symptoms an average of three years after the onset of their health crisis.  It NEEDS to be talked about.  Let’s talk about it all month long.

Biofeedback Therapy

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I have plans to look further into therapies like Biofeedback Therapy to manage my chronic pain as opposed to painkillers and meds. I can’t go one like this forever –in pain and exhausted for about 70% of my life.

It’s been on my mind for a while now to give it a try. I found this article interesting.  I am always amazed at how slow the “medical community” is on the mind body connection.  It was only in very recent history that this has become an acceptable thought in the medical world.

They are finally acknowledging legitemate treatments like acupuncture, cognitive behavior therapy and bio feedback therapy as medicine!  Great news. I look back and wonder what took so long?  Another twenty years from now this “lag”  will seem ridiculous to everyone, not just some of us.

I Rode the Subway!

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After Tuesday’s yoga setback I was feeling adventurous yesterday.

Although I was still feeling a bit run-down T and I were headed out for the day and he suggested we take the subway since we were together.  It’s been over two years since I have taken the subway.  I jumped at the chance.

Two years ago when I was fainting all over Manhattan I felt trapped down in the subway many times.  Aside from the fear of “white-ing out” underground and having to find my way to street level for help or fainting amongst strangers, the subway stairs have proven to be too diffiult for too long now.  Many days I have to make choices as to what I will spend my energy on.  Will I attempt subway stairs today or do I want to be able to run some errands or cook dinner?  Do I want to wash my hair or should I save my energy for some doctor appointment I have or should I clean ?  It’s ongoing.   Now that the bad days are occurring less and less I am doing more and more.  I couldn’t wait to try the subway with T by my side and again later in the day while I was with my sister.

It felt amazing.  Really great.  I had to stop a couple of times on the way up the stairs.  I still don’t feel confident enough to do it on my own but I’m definitely getting there.

At the end of the day my legs were aching from my subway adventure but it was so satisfying to know they were aching for a great reason.

Staying Focused

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After my post about yoga I was so set for Tuesday afternoon!

Well, my body had other plans.  I felt absolutely awful, it was one of those days where everything hurt. Bad.

I couldn’t imagine moving far from bed so attending a yoga class wasn’t a realistic goal for the day.  I am  getting better at accepting the bad days so for once I didn’t dwell on the fact that I couldn’t do what I wanted.  I’m getting better at it.  Head up, move on.

I’m going to try again the end of the week.  Hoping my body is up for it then.

Icy – Scleroderma and the Cold

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This body of mine is not built for the cold.

For the past couple of weeks I can’t stop talking about the weather.  I’m even get sick of hearing myself!  But I just cannot believe how cold I get.  Due to my Scleroderma, I do not have good circulation.  Among my symptoms of the disease is something called Raynaud’s.  My left middle finger turns blue and my toes turn into white popsicles when in the cold.  Yesterday I spent the entire day trying to keep warm.  I had leggings, jeans, serious antarctic socks, toe warmers, and many layers yet still a short walk in the cold left me shivering for hours.

I definitely wouldn’t last without these babies.  I just stocked up on these toasty stick-ons.  I highly recommend them for anyone walking around with cold feet.

I am two people

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Yesterday i felt so amazing.  Tons of energy, no pain, no achy muscles… I did as much as I possibly could in one day.  I did not want it to end.  It was magical! To feel able-bodied, wow.

I’ll never understand how I could experience a day like yesterday and then wake up like this today.  My head feels like it is filled with a thick fog, like all I can do is stare.  I feel exhausted, as if I had an intense workout for hours.  Muscles ache, and I can’t do much else than sit on the couch.

I’ve given up trying to make sense of this because I’ll never find it.  Guess I have to just sit back and let it pass.  I have no energy to do otherwise.

Rheumatologist today

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Off to an appointment with my new Rheumatologist Dr. B.

There is a controversial decision that I am about to make and hopefully today will help.  So far, I’ve spoken to all of my trusted doctors and healers and they seem to be 50/50 on the subject of using antibiotics (minocycline) as a cure/ control for Scleroderma and autoimmune diseases.

The theory is best explained here Roadback.org

It is an interesting theory and out of my desperation I will try anything to get rid of illness and disease in my body.  I am not sure what my gut feeling says anymore, it’s a battle between knowing there probably isn’t a quick fix to anything health related and wanting to be better… taking a pill and BAM it’s gone!  I want to believe that but after speaking with my Osteopath yesterday he made a good case to stay away from months of antibiotic therapy.

I’m so confused.  It’s so hard to make decisions when there are no answers.  I want to be patient as Dr. V (my Osteopath) advised me yesterday.  He says he believes I will make a full recovery, that I’m in the process of doing so,  but it’s up to my body to decide how long this will take.  Patience is hard however when you feel stuck and you’re wondering when this will end.  I always like to think I’ve tried everything I possibly can…

At this moment I am leaning away from the antibiotics.  Something about it doesn’t seem to be “right” for me.

Gall Bladder Flush – Getting rid of all the junk

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Remember when I got so sick a little over one week ago?  Well, what I thought was a stomach virus turns out to be a Gall Bladder attack.

I didn’t even know what the gall bladder was or its function but apparently mine was angry.  I wasn’t exaggerating when I said I was getting sick for hours.  So gross.

After this diagnosis I went to a book that I use for almost everything.  It’s called Healing With Whole Foods by Paul Pitchford.  It based on Chinese medicine and it offers remedies for everything through certain foods.  I love it.  I feel so in control when I open that book and find so many ways to help it.

Anyway, I am going to do a gall bladder flush suggested in the book.  I have to wait to do this on a day I will be home the entire time but lucky you, I will write all about it.

For some reason, I did feel good when I read this part in the book:

Most chronically ill people need gall bladder cleansing before recovery is complete; this includes individuals who regularly experience stress.

It made me feel like I’m towards the end of this.  Like there may be a light at the end of this chronically ill tunnel…

29 Gifts

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To counteract my gloomy post of this morning I wanted to share this.

This book was sent to me recently, and I read it within one day.  It really spoke to me because I honestly could’ve written it.  There were many similarities between the author and myself.  It’s a story of a woman’s struggle with her diagnosis of MS and the amazing way she has changed her life.

The book is based on a prescription the author’s spiritual advisor gave to her one day when she called in pain and desperation looking for help.  It was to give 29 gifts in 29 days.  The rest is a beautiful story of healing and self-empowerment.

Visit the website for the book here.  You’ll be so happy you did.

Thank you to the lovely Stephanie Jeanne

I’m starting my 29 Days of Giving next week.  This week is filled with doctor appointments so I’ve decided to begin my giving at a time when my brain is usually spinning out of control … after seeing tons of docs.  I can’t wait to start. I really love giving gifts.