Heart to Heart Group for Women


Heart to Heart Group for Women

Where Women can Gather and Discuss our Unique  Issues.

Members: 112
Latest Activity: Aug 22

I AM Woman

I am woman, hear me roar
In numbers too big to ignore
And I know too much to go back an' pretend
'cause I've heard it all before
And I've been down there on the floor
No one's ever gonna keep me down again

Oh yes I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong (strong)
I am invincible (invincible)
I am woman

You can bend but never break me
'cause it only serves to make me
More determined to achieve my final goal
And I come back even stronger
Not a novice any longer
'cause you've deepened the conviction in my soul


I am woman watch me grow
See me standing toe to toe
As I spread my lovin' arms across the land
But I'm still an embryo
With a long long way to go
Until I make my brother understand

Oh yes I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to I can face anything
I am strong (strong)
I am invincible (invincible)
I am woman
Oh, I am woman
I am invincible
I am strong

I am woman
I am invincible
I am strong
I am woman

Discussion Forum

Got my own MRI"s have to wait until Tuesday for them to read the mean time the notes are scary!

Started by broken1977. Last reply by TracyZ Dec 22, 2013. 3 Replies

his little excerpt on my CT Scan that says nothing else other than still has Chiari with notes that i have mild Emphaysema i cannot remember the word for word but i copy pasted it and it was BAD the…Continue

Pregnancy with Chiari

Started by JFalgione. Last reply by A Jackson Aug 24, 2013. 6 Replies

Hi!!I joined to try to find out some information on Chairi during pregnancy and delivery. I was diagnosed with Chairi when I was 7 and had a decompression and later a C1 C2 laminectomy. Since my last…Continue

Menopause and Chiari

Started by DeniseH. Last reply by Puggles Aug 22, 2013. 2 Replies

Does anyone know if perimenopause can exacerbate the Chiari symptoms?  I've had some signs of approaching menopause the last couple months.  And the last month all my Chiari symptoms seem to be…Continue


Started by Surya. Last reply by TracyZ Aug 22, 2013. 4 Replies

Hey Ladies, here's a fun subject! Chiari and Sex! Now, I don't have a boyfriend and I'm not into one night stands, but I've recently heard there can be problems associated with sex and having…Continue

Comment Wall


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Comment by Mandy on May 3, 2014 at 4:11pm

Furie, very glad to hear breast surgery went well!  Sorry to hear about the job though, working was tough for me when I did it.  Keeping you in my thoughts :)

Comment by Furie18 on May 1, 2014 at 10:35pm

I am definitely healing up well. But unfortunately my job has made my back and neck worse i think. Until i can find a different job or one outside of retail, i am stuck here since i can't afford to not have a job. but, i am dealing, as is my husband. He is hardly ever home but the more he goes out of town, the more he makes so it comes in handy. He does what he can for me though. :-)

Comment by jcdemar on May 1, 2014 at 4:15pm
Thank goodness. Thank you for posting Furie and I hope you are healing up well. Yay!!
Comment by Furie18 on April 30, 2014 at 9:55pm

I just realized i never came in here to post an update about my breast surgery. :-) I am all clear. It was a fibroadenooma and once removed, it should not come back. they took it all out and it is healing fine. No side effects that i know of and no more worries. YAY!! 

Comment by Furie18 on February 25, 2014 at 9:35pm

Thanks, I will definitely check into it.

Comment by Abby on February 24, 2014 at 3:51pm


The Driscoll Theory is a good place to start.  She actually has Ehlers Danlos and is a doctor.  She has done a lot of studies on cell mass and Ehlers  Danlos.

here is a little of her site.

Mast Cell Disease is at the root of the Driscoll Theory. In mast cell disease – mastocytosis or mast cell activation syndrome – mast cells degranulate and release a host of toxic chemicals throughout the body.  Mast cells can hide all over the body – in the gut, in the brain, in the bladder, etc. When they are in the brain, they can affect the production of CSF and cause autonomic dysfunction symptoms. They can damage blood vessels, causing them to be ” ‘leakier’ and weaker” than they already are in EDS patients. In the gut, they cause serious GI issues, including food sensitivities that mimic gluten intolerance and more. Flushing, tachycardia, fainting/near fainting, abdominal pain,headaches, fatigue are symptoms of mast cell disease and, not coincidentally, are also symptoms of POTS. Treatment includes H1 and H2 histamine blockers, like Zyrtec and Zantac. A mast cell stabilizer like Gastrocrom is the next line of treatment. Some researchers believe that POTS = mast cell disease (there is certainly a connection with hyperadrenergic POTS); other doctors are successfully treating IBS with mast cell stabilizers. Mast cell disease is a big area of research for the EDS community and offers a very interesting avenue of investigation.

We are here to help you and if you need anything, please let us know.  Mandy is great for her research.  Some of us have all three conditions, Chiari, EDS and Dysautonomia. 

Comment by Furie18 on February 24, 2014 at 1:09pm

Im glad I made your day! To be honest, I dont know how to feel about it. Im relieved its not cancer but I know from research that if left untreated, cell growth of this kind could possibly lead to cancer. So I have mixed feelings. With my allergies, stomach problems, and now the Chiari and syrinx, I just dont know how my immune system will be for anything else. Im not afraid of surgery as I have had some done in the past for my allergies but the rapid cell growth kinda scares me a little as I prefer to know why something like that is happening. 

Comment by jcdemar on February 24, 2014 at 12:29pm
Furie, you made my day! Thank goodness! So sorry for the surgery though :( please let us know how your appt goes. How do you feel about this?
Comment by Furie18 on February 24, 2014 at 12:22pm
Abby, I have not been tested for anything else as my neurologist swears my headaches and other stuff aren't from Chiari. I am going to try seeing the Dr in Hershey who deals with it to get another opinion but I will ask about the mast cells thing when I go in on the 4th to the breast health center. I have been looking up info on these other diseases and such so I will have a definitive list to ask the Dr in Hershey when I can get in to see him.

Comment by Abby on February 24, 2014 at 9:26am


I am so thankful it is not cancer my friend.  I am sorry you still have to have surgery. Have they tested you for Ehlers Danlos?  It is a connected tissue disorder.  I have read about Mass Cell, here is a little information for you. 

Mast cells are part of connective tissue.  They can be found in the skin, the linings of the stomach and intestine, and in other organs.  Mastocytosis results from proliferation of these cells. Mast cell activation disease (MCAD), a more common but less recognized group of disorders, is characterized by accumulation of genetically altered mast cells and/or aberrant release of these cells' mediators.  The symptoms of mastocyotosis and MCAD, or “masto” collectively, are similar and include fatigue, skin lesions/hives, flushing, bone and muscle pain, nausea, vomiting, bloating, malabsorption, food and drug intolerance and other environmental sensitivities, infections, ear/nose/throat inflammation, anaphylaxis, chronic sinus infections, episodes of low blood pressure and faintness, tachycardia, headache, memory impairment and brain fog.  HEDS patients complain of many of these same symptoms and some, like me, have been diagnosed with mast cell disease.

Dysautonomia is associated with EDS and mast cell disease, as well as a number of other medical conditions.  The term dysautonomia refers to any disease or malfunction of the autonomic nervous system. This includes postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia, vasovagal syncope, mitral valve prolapse dysautonomia,
pure autonomic failure, neurocardiogenic syncope, and neurally mediated hypotension static intolerance,  thermoregulation disturbances and sleep disorders are some of the more common symptoms of autonomic dysfunction in HEDS and masto patients.  In HEDS, one known cause of dysautonomia is increased venous pooling derived from collagen weakness of the venous wall. [2] As with HEDS and Masto, dysautonomia and its causes are not fully understood. 


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