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Avatar universal

Wow - everyone is quiet

Hope that means that everyone is healing, or maybe just enjoying the summer.

I am not well - feel inflamed all over, but mostly my spine right now - I hate the pain..how can there be so much pain, when I am taking the painkillers and muscle relaxants, etc., sometimes I think they do nothing but sap my energy even more.   I try to stay active and positive but it is really hard.  Walking is the only thing that seems to help.  I haven't been feeling well enough to exercise beyond that, which means I am losing strength - not good.  Many days I am just sitting in my apartment all day...very isolating and hard.

Anyway I have not been doing much on this site or the other, note feeling up to it really, but am hoping to get some references up soon.

As always, thinking of you all and hoping everyone is relatively well.

Jo
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Avatar universal
Hi Twig...I was a bit worried when we hadn't heard from you in so long, that you might be dealing with things getting worse - and I am so sorry to hear that is the case.

I do hope your little girl does well.  Having such a strong Mommy will stand her in the long run.  So she is lucky in that regard.

You know I am in Toronto and you are more than welcome to stay at my place, with your husband, family whatever - I have a decent one bedroom downtown and I could stay at my sister's home which is nearby, if you ever wanted to come to the big city for a second opinion or therapy - I have wonderful doctors here at Women's College Hospital (just a few minutes away from my apartment).  Not an empty offer - so please keep in it mind.  The pathology at WCH is known for its excellence and I have a wonderful breast surgeon and rheumatologist (he is at Western, but whatever), great guy who I totally trust.  So you have a place to stay for free if you ever wanted to entertain this - I know it is hard to travel with small children...anyway a thought.  See us Torontonians are not all that bad :)

Wide excision is pretty common in treating this disease, I guess that is what he is proposing - excision of the mass?  I do hope your breast settles.  Yes, as you say, infection and hemorrhaging is pretty much the byproduct of the GM inflammation...is this guy your only hope?  I am sure he is a good surgeon and will treat you well, but I wish he was more open about GM.

And I agree sometimes you have to laugh or you will cry - both are good for you anyway :0

Sorry to hear you have so much on your plate right now.

Hang in there!

With love, Jo
Helpful - 0
1356482 tn?1283629287
Hi Jo.
I am soooo sorry to hear that you are feeling so bad. I too have been preoccupied with...life, I guess you could call it. I too am also guilty of being out of touch with the group. Guess life does tend to get in the way sometimes. I do hope that things turn around for you Jo. It is horrible to feel in pain all the time. This darn disease takes soooo much away from us!!
I am still have a flare up...suppose to be having surgery on the 30th of August. The surgeon wants to remove "the mass". He says that he doesn't like it. The ultrasound says that "whatever" it is is seems like it is infected and hemmoraging inside. Sounds lovely, huh?!! I don't know what to say anymore. I am going along with what the surgeon is saying because when I tried talking about my GM diagnosis he totally ignored me and just kept saying that this is not normal and needs to be removed. Well, duh.....like I didn't know that this was not normal? Give me a break!! These doctor's here in Newfoundland don't know their arse from a hole in the ground...excuse my french,lol.
I have also been busy seeing doctor's with my little girl, who is 4. She was diagnosed as being autistic on the 13 of July. Sooooo.....now I have a whole new world that has to open up for us. More doctor's appointment's for her and hiring home therapists, speech therapists, child management specialists...and the list goes on. Stress? yeah, Jo, I hear ya. Wonder if that may cause these flare ups? Hrmmm....if so I guess mine will be  around for awhile,lol. I gotta joke and laugh cause if not..what is the other alternative? And, I'm sorry, I am not ready to lay down and die yet!! Hope you feels better, JoJo. You have been such a good shoulder for everyone else here, I hope you feel that you can vent to us anytime!!
Take Care
Twig
Helpful - 0
Avatar universal
Hello !

So sorry, I have not bin so active at the moment. It has bin so nice weather in Norway and I have bin trying to start walking in the mouintans again so I have not bin in at all.
So sad reading about the situation at the moment. I wish there was something I could do. Have u talked about witch treatment you are taking? Its so good of u to write to us, and I know when I have bin very ill its bin so good for me to write to you and you have always bin sutch a good support for me. You are a fantastic person who gives so mutch of your self and I feel a bit bad not writing before now. Hope you are feeling a bit better.
I will talk to my doc ( i know i migth have bin talking about this before) therapy. I feel also VERY isolated some days. Some days I dont see the point of getting up from bed. Being sick for a very long time is very lonely. I hope that the help of this GM group gives many woman out there help.
You are always in my mind.

Lill.
Helpful - 0
Avatar universal
Hi - thanks for the good wishes.

No, I am not working at all right now...I lost my job.  One of my stresses :)  Really has effected me negatively mentally and physically, emotionally.

I see a rheumatologist and he had done tests - spinal MRIS, full body bone scan, etc. and I have pockets of severe inflammation in my back, but also in my hip, knee and shoulder, in addition to the breast...but of course, no one knows why...he things they may be related.  He even did a fluid and bone spinal biopsy but it is negative for bacterias, just like the GM.

I think that may be why my case is a bit different - mine is throughout my body in a way, although I know others have made this comment too - when my breast flares, usually the rest of my body is also very stiff and painful and I feel very unwell and I will then have a flare of my spine pain.

Miriam, I spent THOUSANDS of dollars last year on acupuncture for my spine, and it did help, it managed to get me out of a time when I couldn't straighten or move without intense pain, but I can't afford it anymore.  But yes it does work for my spine, I have never tried for my breast.

Frankie - glad to hear you have a good doctor - I have never heard of Tamoxifen for GM...methotrexate would normally be the second line drug after methotrexate - anyway, hopefully you don't ever need either.

Thanks for being good friends.

Jo



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Avatar universal
I've been busy with life and almost forgot to update my situation.
I feel so bad for you since you've helped me out so much.  I really appreciated all the kind and encouraging words and advice you've given me! I took all your advice and searched for a doctor like crazy especially after my Breast Surgeon removed the mass then dismissed me later to pass me on to another doctor who knew nothing of GM. I hit rock bottom and felt so alone!

I got back on my feet and called friends other doctors searching and I found a doctor who is treating GM patients now! This particular doctor is a Breast Surgeon that specializes in Oncology and takes rare and unusual cases.  She met with me and made a game plan.  Since the Mastitis mass was already removed this past May, she wants to see me in 6 months.  If I have a reoccurrence, then she prescribes a steroid treatment.  With her experience, she said that usually stops it.  If not, then Tamoxifen which I hope to never go there.  In the meantime, I'm eating healthy and planning to never have a reoccurrence.  
I was wondering why do you feel inflamed all over.  Is it the Mastitis spreading or do you feel pain from the medication? Thanks for everything and hang in there!
Frankie53
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Avatar universal
So sorry you are not feeling well. Have you been able to work at all? Have you tried acupuncture at all to address the spinal inflammation/pain? I think it really helps some people.
You are generally so positive on this site, that this pain must really be dragging you down, so I hope it goes away soon so you can function again.

Miriam
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