Great saying about depression
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Good morning ladies and welcome LindaM! Ditto what Stanzie &
Kate said above. Before I was first diagnosed I felt there wasn't a light at the end of the tunnel so I truly know how you feel. And to go through surgery again must be crushing and scary all at the same time. This is a great place to come to rant and scream and cry and to actually have someone to listen to you! It's strange, but in many ways my life is so much better now then it was before. BC made me make some hard changes that I never would have had the courage to do if it weren't for my diagnosis. It also taught me to say no. Gentle hugs and please continue to come and share and let us know how you are doing.
Barbe: Wow, you really do have a full plate! I am sure you have done much research on FM but there are many supplements you can take to help ease your pain! My dr. has me take Wobenzyme 5 pills with 1000 mg Vit C but I also take Iodoral with selenium, magnesium, Vit E, Vit D--all of these things can greatly help you! since my diagnosis I am in pain constantly and these things work. If you would like some info breastcancerchoices explains the iodine protocol and how it can cure fiberous masses in our breasts and this is a specific site for FM: http://www.holisticonline.com/remedies/cfs/fib_nutrition.htm
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Kate: My job is beautifying homes and replacing things that are broken, removing things you no longer love in the home or just cleaning out closets is so freeing. It's literally like taking a load off. Very Feng Shui. Congratulations on your new, beautiful dishes.
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Linda - you will find lots of support here! Glad you decided to post sometimes that first post is hard to do. I think Barb is right admitting a lot of the stuff is definately a good first step.
Barb - I'm so sorry people didn't understand FM. I have a couple of friends who have that and it is truly debilitating at times. I have MS and my Doc thinks I have had it since I was a child. I used to talk/complain about pains, numbness, dizziness and such and my family actually just made fun of me. Later they started calling it my "affliction". When I was finally diagnosed at 42 my Mother admitted they all thought I was a hypochondroic and was making it all up for attention. Family is sometimes just so precious! But I am sorry your friends deserted, I would have thought better of them. And to think how much they are missing - you have more personality and one of the best senses of humor - they totally blew it losing someone as grand as you are.
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Kate - Oh I have gotten to love dishes!!! I never thought about them but now I have some that I keep checking to see if they will ever go on sale! Congratulations!
This weekend for fun, my son with DS wants to make Valentines so that is what we have planned.
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Thank you Stanzie. How did the finally diagnose MS? It is very similar to FM as it comes in flares.
I think we have to see these dishes of Kates!! PICTURES, PICTURES, PICTURES!!!!!
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Mee too! Kate show off that pretty china!
Barb- yes I think there are similarities. I had had leg pains so horrible I had seen a neurologist about 5 years before but luckily he didn't diagnose it as I didn't have insurance at the time. Anyway, my step-mother-in-law had died very suddenly and all of a sudden one side of my tongue went numb. I thought I had burned it but it stayed that way for several weeks. So finally called my Doc. and when I told them part of my tongue was numb he immediatly came on the phone asking what part. Apparently if it had been like one half or the other it could indicate a brain tumor but mine was only on one side. He said he knew then it was MS but sent me to a neurologist who sent me for an MRI and that along with my lists of years of symptoms diagnosed MS.
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Ah, the sheaths on your brain. That's a big test. I just had a brain MRI last year and it was clear. Life is very interesting, isn't it?
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I have been lurking on this thread and have finally decided to post. I have been going through a lot of emotions lately and I don't know where to turn. I had a BMX with implant reconstruction. I had my first implant exchange in November 2009 with a revision in April of 2010. I am having still having a hard time trying to feel "normal". My family and friends have moved on from all this but I haven't. I have no one that I feel I can talk to when I am feeling anxious about all of this. My family and friends just don't get it. I think a lot of my feeling down begins and ends with my DH. I know that he loves me but ...... I really have no one to talk to and I'm hoping I can come here for some support and guidance.
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what a great forum- thank you all
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Hi Don23, sorry you are going through this nonsense. There are many wonderful women who can help when you have no where to turn. I understand the wanting to get back to normal, problem is you don't know what that is? Everyone else moves on and you sit there thinking what the hell? I'm sorry you are in this place. (((((((((((((((((hugs))))))))))))))))))))
Maureen
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Don23 - well I think you are in the right place cause that is exactly what we are all trying to figure out while supporting each other's fears, frustrations, anger and sadness. I don't know it is just hard but hopefully we will all get through this and think back of it as a transitional period ......at least I'm certainly hoping so...
Barb - wanted to ask you how was your FM diagnosed - isn't that difficult to pin down or am I thinking of something else. I just know it is very painful and hard. So glad your MRI came out clear! I'm just thrilled when they tell me nothing new has happened!
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FM was diagnosed as I was "text-book" before there was even a textbook!! 18 points of pain, symmetrical, weakness, pain, stimulus stress, foggy brain, inflamation etc. I was diagnosed 11 years before my doc admitted it. He didn't want me to "live it". I was SO angry as for all that time I thought I was a hypochondriac and/or going crazy!!!
Sometimes FM is used as an "umbrella" dianosis when the docs can't find anything else, same as chronic fatigue. But FM is truly debilitating. I was in Greece for 2 weeks once and spent a day and a half in bed (that was an expense "nap"). I had a cane with me too and didn't even question myself!! Then I find out it was all justified!
It's like when people say they had a migraine yesterday. Really? My migraines used to burst blood vessels in my eyes so all the white was red. I would lose 3-6 pounds in a couple of days, too. Couldn't even lift my head off the pillow. And you had a migraine? Do tell.....
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I don't understand why on earth Doctor's do that - it certainly isn't helpful to anyone , are they scared to be the one to give the diagnosis or worried they are not correct? Wow, so awful!
Thanks that is what I'm remembering that sometimes it is used a s you say, " an umbrella condition" but that is what I thought I read that there were specific pains that are indicitive of FM.
When you say "used to" with the more than migranes suffers can imagine migranes , does that mean you have found something that helps so you don't have them as bad? Gosh I certainly hope so. And I'm gathering it is also neurological - I think I now understand why my neurologist also specializes in migranes and has a specific headache specialist. Wow, that is worse than I knew. You and your husband are amazing! Doesn't seem right you both would have such huge diagnosis'?
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Stanzie, apparently your body chemistry changes every 7 years. I grew OUT of migraines and INTO allergies...sigh. I'll take the allergies hands down though! I keep hoping the FM will change but it's been 19 years...sigh.
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Really??? Wow, I want to keep track of that one? Very interesting! I'm hoping your FM will decide this is the year to leave!!!!
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don23 I am glad you posted. This is such a long process and I don't know that it ever ends but will probably become more manageable. At least that is what I am hoping. You can't feel normal because what we feel isn't normal. To be numb and no sensation is not normal for a woman. Everything has changed for us. Our appearance, our sensation, our intimacy, our future...... everything. It is NOT over when the incision heals. Because our families and friends do not understand the surgery impact or the diagnosis and what it means to live with it the rest of your life they think we our not moving forward at times I think.
Do not be afraid to share what you feel here. This is a group of very supportive people. I am a little over a year out. Had multiple complications and still heavy into sadness over all the losses and dealing with being angry at times for all the things that went wrong due to the hospitals lack of care. And the things that have been said to me.
My dear husband actually read two books about breast cancer the emotional aspect of it and he said it helped very much. Would your husband be willing to do that?
Keep coming back and sharing. It helps sometims just to put our feelings down in words.
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Welcome Don23 and Linda_M,
((((Barbe))))) and ((((Stanzie)))), it just stinks when you have multiple chronic diseases. You both make great points above. I'm far too tired to go back up and quote them, but when I read them I said "Right on!" and "You go girl!".
I'm in a no-sleep zone. My night sweats are so terrible right now (they wax and wane, but right now they are in full-on mode). I'm going to be extra nice to myself today and take the afternoon off.
docs who say "oh yes, we knew that was cancer two years ago" just bug the living daylights out of me. Makes me distrust them when they say "things look good." Blah, blah, blah. Geez, I'm so exhausted and crabby, I'm just going to stop now.
time for me to go get an attitude adjustment. I might find it at the bookstore.
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Barbie, you can help your night sweats by not sleeping in polyester night gowns and making sure your linens aren't a poly/cotton blend. I sleep on a towel when they're really bad and use a towel on my pillow case too. At least I can sleep through most of it anyway. Give it a try! Have a good nap when you get home.....zzzzzzzzzzz
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Thanks for the welcome ladies.
Determined - You are lucky your DH read up about this terrible disease so he can understand more. I don't think I'd be able to get mine to read any books about the subject. He is the type of person that if we don't talk about it and sweep it under the rug it will go away. Well I can't do that. I can't pretend this never happened. My reconstruction did turn out OK but it is not perfect. I'm not sure anybody's is but I am OK with that part. The part I have a hard time with is when I am getting changed and look in the mirror and realize what BC has taken away from me. This is on a daily basis (maybe I should stop looking in the mirror - LOL). I don't regret any of my decisions I have made along the way regarding any of my surgeries. What I hate is the fact that I had to make those decisions at all and I'm still angry. In a few months I will be two years out from my diagnosis and I don't feel this is getting any easier to deal with. Any little ache or pain my mind goes to a dark place. Did I tell you that I hate this disease?
I'm sorry to rant because I know all of have your own situations to deal with. It does feel better to express myself than to hold it in. Thanks for listening!
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Wow! This thread is starting to move quickly. I've been off for a few days and am trying to catch up with everyone! First of all, welcome to all the new posters. We are really glad you're here and we'll help in any way we can. We're all there with the friends and family who don't get it, can't get it, never will get it and who expect everything to go back to normal when there is no such thing. There will be a new normal some day but most of us aren't there yet. So feel free to "let it all out" so to speak.
barbe- If it helps I've had the same issues with friends regarding my FM. It's the invisible diseases that are so challenging. From the outside I look the same on my "good" days and my high pain ones so no one really understands who bad it can be. So I can definitely empathize with all of that. Have you ever done the clothespin test on them? Ask them to clip a clothespin on one of their fingers. Tell them to keep it on as long as they can stand it. (Most people last about 2 minutes before they have to take if off.) Then tell them that having FM is like having clothespins all over your body but you can never take them off. Did that with my family and they kind of got it after that.
So, ladies, I have some news! I had my first job interview in decades. (Been a stay-at-home mom.) It was a phone interview and have now been asked to come in for a group interview on February 24th! It is for a flight attendant position with US Airways! (I used to be a flight attendant before I had my son.) Kind of don't feel like I'm ready but my DH is having health problems so we really need a second income to supplement the disability he will get. I'm kind of freaking out but trying to be optimistic. Keep your fingers crossed!
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Kate - Congrats on the job interview! I'll be keeping my fingers crossed for you. Sorry about your DH's health problems. Keep us posted on the job.
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Oh Kate that is fabulous!!! I'm so happy for you! Once they meet you in person they will have to hire you. I'm sure you will be fabulous and everything will come back to you including your confidence. I'm sure you were and will be again an amazing flight attendent!!! Will be keeping all gingers and toes crossed for you!
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Kate: Congratulations on your first interview! I had no idea your DH was having health problems but I hope that it all works out for you. I have a really good friend who works for American!
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Kate, that's amazing! You passed first base....now, go into the group interview as if you are just practicing. Don't go in desperate or they'll sense it. Passion about what you do is understandable though....you go girlfriend!!
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don23 don't apologize that is why we are here. I feel the same way. The intensity has softened a bit but still get angry, hate what I have lost, miss the old me in the physical as well as the joyful, spontaneous, goofy person I use to be. This is the part that people don't get.
I go to a mastectomy support group and it is so nice to talk to women that have walked in my shoes. Right now I am trying to figure why I have hip pain. They did an xray and it was negative, but would a normal xray pick up cancer in early stages? I know how we fear the unknown and the fact it could always come back.
I hope that you and your husband will be able to talk at some time, it would be really hard not to bounce my feelings off of mine. I think they always want to fix things. My husband said he has learned that it is so important to just listen not fix sometimes. I told him I didn't want him to try to fix it just listen.
Take care and I hope you can find some peace today
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That is very wise of your DH to understand and "get" that. Just listen. Don't tell me it'll all be okay. My DH just sits there, but I don't think he is even listening, but I like what was said above about "just be a mirror". That is an excellent point! So he is my mirror. I can say things like, "When I die...." and he doesn't even flinch.
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Thanks for the good thoughts everyone!
MBJ- My DH is a pilot and years ago was diagnosed with essential tremor. Now, though, he's exhibiting symptoms more like Parkinson's. He hasn't been officially diagnosed. We were waiting for some new tax free disability to kick in. Once he is (if it's PD) then he will almost certainly be grounded and have to go on disability. At least with the new insurance, combined with a paycheck from me, we will hopefully be able to stay in our house.
Determined- I'm sorry about your hip pain. I can understand your fears. Just wondering if you are or have gone to PT after your MX. I had heard that we can start having neck, back and hip issues just from holding ourselves differently We don't realize how much we are "tucking" in our chests and hunching over which can affect our walk, stance, etc. I was actually having all kinds of issues just from using bad posture while logging hundreds of hours on my lap top on BCO! Hope it turns out to be something minor! (((hugs)))
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Don - no need to apologize, this is why we have this thread. I rant often.
Barbe - I had a great nap, thank you. I've been using the towels for a while now. No polyester jammies (but jammies are better than no jammies... skin on skin is by far the worst). I found fleece sheets to be wonderful. Like the towel, they are nappy, so they wick away the moisture.
Kate - Good luck on the interview!! And like others have said, just be your fabulous self.
Determined - WOW. You said in less than 20 words, what I've been trying to say for three years. With far more words and less accuracy. "miss the old me in the physical as well as the joyful, spontaneous, goofy person I use to be." THANK YOU!! Not only have you given me words to explain it, but I think in a way you helped my define it.... for ME. I'm going to take this one to my cancer therapist tomorrow. Maybe we can begin to work on finding the joyful, spontaneous, goofy person that I used to be.
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I sometimes think this whole thread should be printed out and sent to every BS, PS, hospital and cancer center so they would have a better understanding of how to help women after MX. So many of you seem to reach into my brain and dictate my thoughts summing up perfectly (and eloquently) my anguish at times. I am so grateful for all of you.
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Kate - good luck on your interview! Just stay optimistic and you'll do fine. You already have the experience - now you just have to wow them with your personality. I have a sister that is a flight attendant and she just loves it.
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