Emotional Side effects

[MzMonica2011]

Good evening Ladies,

I have been following this group for the last couple of months and I would like to say that I am so GRATEFUL to know that I'm not alone in this journey. I have been struggling how to deal with this disease on a positive note. It has been hard, especially when I have to explain to people what the disease is ("Its not breast cancer, but it mimics the symptoms of breast cancer.....") and how the recovery process is. I want to know how are you guys handling this emotionally? Ever since I was diagnosed (August 18th) I've been on a "emotional rollercoaster". I'm not sure if it is the 60mg of Prednisone a day, or just the fact that I'm dealing with something that doctors has limited medical info. What ever the case, I've been trying to figure out how to handle the jumbo-sized bowl of emotions that swirl around daily. thanks again ladies for your help.

[JoJo45]

Hi Monica:

Yes, you have every good reason to be going loonie!  Most of us have been there or are there. (Think I am still there, maybe permanently now).   Prednisone is a very, very powerful drug, so good and bad side effects.  It shuts down your own adrenal system at anything over 5-7 mg a day I believe it is, so a whole bunch of psychiatric side effects are possible.

Myself I was revved up, lots of energy, very out of it though and then horrible anxiety when they tried to taper me off - really painful.

So welcome to the loonie club and we can all support each other....

Seriously though, the experience of being diagnosed with such a rare and potentially serious disease, with very serious treatment decisions to be made with inadequate information, when you are feeling very ill, is one of the toughest times most of us will hopefully be faced with.  The effect can be profound and far-reaching.

I encourage you to be as kind to yourself as you can, to your body as it may change, and to seek out professional counselling if you can - personally I have done so for many years and it has helped immensely.

And we are here for you too.  We may pop in and out but we are here and we care.

Cheers, JoJo

[SherpaTat]

gosh, I am sorry that I read your post a month after you wrote it.  It sounds like I could have written it!  I felt the exact same way.  I believe that the high dosages of prednisone, actually any of the prednisone made me practically insane.  I felt so miserable all the time.  I cried all the time.  I would sleep 2-3 hours per night then do it all again the next day.  My friends took me  to a famous spa to cheer me up and I sat in the locker area and cried - I didn't even want to be there.  
I was diagnosed only the month before you - in July 2011.  For me, the fact that I still grew abscesses while on the prednisone and methotrexate, I decided to get a double mastectomy. I had it on Jan 19 and am still recovering, it was a hard surgery for me.  Today I feel very good though.  I feel hopeful for my future...a little scared to go under general anesthesia twice more this year for reconstruction, but every day is a step towards normalcy!  You are not alone.

[jackpat]

I have not visited this forum for a while.  I have been dealing with IGM for a while.  The emotional part has been difficult on myself and my family but, we are all getting through it.  I saw all because it does affect the whole family and friends.   There were weeks at a time when I would isolate myself in my room, playing on the computer.    I think that it was more frustrating that doctors know little about this disease.  After my mastectomy I decided to check into a therapy group.  I didn' qualify for the one at the cancer centre because "I didn't have a mastectomy due to cancer or for a proactive approach".  I called a top notch breast care centre and they researched and called back a few days later and told me that they too were sorry that they couldn't find anything.   I am now seeing a wonderful counsellor (less frequently now) who has let me vent my emotions without bias.  My family would get frustrated and angry on my behalf.   I am now seeing a great doctor in Hamilton, Ontario who has started me on IV gamma gobulin which the hope that the introduction of new antibiodies will do the trick.    This is a great site;  it has been beneficial to myself and others.   You may also message myself.    Pat

[Red11483]

Its okay to not be happy all the time this is not easy! Its normal and an adjustment and honestly a bit hard on the ego. I can tell u I felt very much uncomfortable and self conscious at first til I got comfortable with my new normal as I consider it. I still have moments especially as a single woman dating now( long story but my bf and I broke up about 6 months after being diagnosed). This group is great and its nice to relate and have people that really understand.  If it becomes too much though ask for help if u need it whether its a counselor or meds. I have had anxiety and depression and I know when I need extra help too there is no shame in that. My doc said we experience grief and are mourning the loss of our idea of our breast. Just take it one day at a time and keep your head up. If you ever want to talk I'm here just message me.