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Fall Brings Renewed Energy - Hello Everyone

Hello everyone:

As most of you have noticed I have been quiet for some time.  This was unintentional.  

I have been having some serious personal challenges related to my illness which are really taking their toll on me, unfortunately they are of a legal nature and therefore I cannot discuss.

I know others on this site have also had similar challenges...just extremely unfortunate that on top of everything there are those who see fit to try to knock you down and drain you further, when you are sick, rather than support, but I guess that is the nature of some individuals and companies.  Having a rare disease is challenging enough, especially one of the nature of GM...to then have your integrity challenged on top of that, and to be judged, when you are trying to explain the horrific symptoms and the side-effects of the treatment medications, to foster understanding, anyway to be judged lacking in this state, and found 'not to be as happy as others' for one thing -  rather than given any type of support through these horrific flare ups of the disease, when you are contemplating mastectomy to end the pain - I mean it is almost enough to break you in the end.  Anyway I have been enduring this type of thing on top of my medical issues for years now and I am drained.  But I am not a quitter.

I know that I am in the right.  So there is no option but to continue my battle for my rights. Certainly health insurance and other legal issues are items that many of us are faced with as GM knocks us out of the stream of life for awhile...

This site means a lot to me and I intend to stay active in posts and as my health permits, continue to develop www.granulomatismastitis.com, which is currently down...

Anyway, I wish members new and old all the best and hope that all had a restful and healing summer.

Jo
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Avatar universal
Thanks for all of your support.

This site is of value because of our diverse membership, symptoms, treatments and sharing of information of our experiences with others...so it is truly a team effort and I encourage everyone to post their questions and experiences as we are still building data here.  

I so appreciate all of the members -- current and past who have helped each other.

Happy Thanksgiving to the Canadians!

Jo
Helpful - 0
1832634 tn?1325651318
Hi Jo -

I, too, am also sorry to hear about all the difficulties you are going through.  I can only imagine the pains, frustrations and many other feelings that you are rightly feeling as a result of this whole big mess.  You are in my prayers.  After just joining the group tonight, I have seen the dedication you have given to provide a support system for people who have GM.  You are an inspiring person.

Please take care and best wishes,
Maddie
Helpful - 0
1551642 tn?1294351934
Hi Jo--

I've been away from the forums a long time. I'm so sorry to hear what you're going through. This forum is how we found out about Dr. Laya (who has been wonderful), and the support here (especially from you) has been phenomenal. I know that's cold comfort when you're going through so much in your life, but I hope it helps to know that you have helped so many people bear this condition.

With thanks,
Margaret Ann
Helpful - 0
Avatar universal
Kristie - I am glad you are receiving better care because of this forum - some of our members have been really instrumental in sharing best doctor information, and that has been one of our great succcesses, being able to steer women to proper care from the outset.  What a difference that can make.  Thanks for the feedback - I hope the women who have posted and shared and had this effect in your life read this and know what they have done has mattered!

Red - you have been one of our best members for so long, I am really saddened to hear that things have been tough for you, not just with the GM, but life in general.  Keep your chin up.  Your sharing has been a big factor in developing a site here of value, helping other women.  Thanks for your personal support to me, it makes a difference.

Trying to work with GM is a challenge in and of itself.  Trying to maintain professionalism through everything is such an unbelievable effort...truly exhausting.  I do know that well and totally sympathize.

Prior to this I had worked for 25+ years but never had to be off sick or to deal with insurance matters, etc.  It is enlightening, but not in a good way.   No option but to fight though, so I do...

I wish us all some good stuff coming our way!

Jo

Helpful - 0
1702100 tn?1307227324
Hi JoJo,

I'm sorry you're going through a really difficult time. I had an exhausting 2 years of stressful family problems previous to being diagnosed with GM and it just felt like--Really? Something else I have to deal with?

Thank you for all your work and trying to educate and help others. Please keep it up as you are able!

If it weren't for finding this forum, I never would've found a doctor in Seattle who has basically instructed my local OBGYN (she's clueless and not very helpful because she never heard of it) on how to treat and monitor my GM. I'm on Clarithromycin right now that is clearing up my previous 3 lumps/sites, thanks to the Seattle doctor. However, I'm also getting a new one at the same time. I kind of 'forget' that I have this disease but then I have weird symptoms or days that I don't want to get out of bed and I can't figure out why until I remember 'Oh, I have GM.'

Anyway, best to you. Perseverance only makes you stronger! Thanks for all your time invested in helping other women with this disease. It means a lot!

Kristie
Helpful - 0
1548207 tn?1303454180
Jo
I hate to hear u are struggling lately. I agree there is such an ignorance of our disease and it alone can be stressful enough then add on daily life it gets hard.

work is tough cuz u only can describe so much to try for understanding but I think some people think im exaggerating or trying for sympathy. Sometimes I just want to show them how it looks and be like does this look comfortable does being nasueas for 3 days after meds sound like fun cuz its not, it *****. I have only missed a day here and there of work but when i have an abcess its rough the pain is awful and its exhausting. I wish people had more empathy and knowledge.

I too have been quiet recently just trying to deal with it all work, being a mom, meds, dr bills and gm. Then to top it off my bf and I broke up after almost 2 years together about 2 months ago. I can see the light though and know its got to get better for all of us. This group has been such a blessing to have no one should have to go through this alone.If you ever want to talk I am here for u Jo,

Nicole
Helpful - 0
Avatar universal
Thanks Ladies -

just having you post your support and knowing that you do truly know what I mean, is incredibly powerful - that is the true power of this group I think, everyone needs someone that really 'knows' to validate them sometimes...

I want to foster understanding of GM so that this happens less...it has been the worse part of the disease for me - how callously I have been treated by some (this would never happen if you had breast cancer, or at least I hope it does not), how I have been judged during extreme pain and stress and strong treatment medications for not holding up perfectly - you just have to excuse some for their low level of evolution I guess, or maybe it is just plain cruelty

one women posted some time ago about losing her job, and then being refused her insurance due to GM not being recognized yet as a disease, and so she took her insurance company to court and ultimately won...these types of battles are not fun, but will ultimately help with awareness and set precedents, so need to be done

it has been almost five years that I have been fighting GM or its fallouts though and must say I am tired!

thanks to all of you for being such good friends and supports - it really means a lot.

Jo
Helpful - 0
1729351 tn?1310054111
I'm sorry your having a difficult time, but I am glad your keeping your head up. Stay strong and remember we are all here for each other. Email me if you ever need my number to talk. I had a double mest. and it really wasn't as bad as I thought it was going to be. I'm pain free and healing well. God Bless.
Tara
Helpful - 0
Avatar universal
I'm sorry Jo.  I know your frustrations so well.  You're right; you're fighting enough for your health, your sanity, your happiness - adding legal and insurance issues into the mix is almost too much to bear sometimes.  

I hate GM.  I really do.  It's not fair. It takes so much.

And the fact that it's rare only makes it that much more frustrating because NO ONE UNDERSTANDS.

I'm sorry Jo.  I wish I could make it better.
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