Fuzzy's Romp Room

sas-schatzi

to all, this link has several posts re:the work of the liver pathways. For all the drugs we take this genetic testing is IMPORTANT. Please read and ask your insurers and docs for testing sheila

http://community.breastcancer.org/forum/73/topic/798301?page=1#idx_8

thefuzzylemon

Well...today I went to my shrink. I told her that I don't believe anyone can help me. I'm certain no one can understand what I went through, how I got into the position I'm in and etc blah blah. I told her this is crap. I will Keep trying therapy but I'm not sure why. She respected that...and I think she can relate to this hopeless feeling, if nothing else. And, oddly enough, that felt like

progress. I think she listened. But, whatever. I'm guessing that I'll have to fix all this stuff on my own. She said I should be honest with the group therapy people...and I sure will...see what they say about this situation. Ugh. I think im rambling....off to la la land!! Night night lovelies!!!! XOXOXXXXOOO

Chevyboy

Morning all.... Sassy, I could have PM'd you this, but thought maybe by us talking about it, it might help someone else. 

I have ALWAYS had skin and allergy problems... I remember getting ultra-violet treatments on my stomach when I was 9, for some sort of rash going up under my arms.... And when I was 16 the allergies started.  They got sooooo bad, nothing would help.  I became addicted to Neo-synephrine nose spray... even bought the stronger strength and diluted it with saline myself. 

Finally had to do something that would stop that cycle.  Allergy shots ARE the only thing that would help me.... It took maybe 2 years of testing, and the de-sensitizing shots, but it worked.  Then I could finally breathe, and hear!   I haven't needed anything else now for maybe 20 years.   I do get Asthma, when I get sick, but maybe only once a year.

I don't have food allergies....   It's my skin.  I have had 2 small skin cancers.... and then the breast cancer, but not until I was 72.

I know I cannot be around any ammonia smell, or strong solvents.  It is absorbed through your skin...and your hair!   When my DH uses Epoxy, he has to do it out in the garage, and let it dry there.  THAT is the worst.  I can smell it, and KNOW if it is anywhere around.    Same with Paint Stripper.  Even that glue used to lay down kitchen flooring.   It's funny that the nail acrylic I used to use didn't bother me.  

I do take Omega 3... and the multi-vitamin, along with my new PRO nutrients.... 

Did you ever hear of the "Black Pearls?"  They were bought in Chinese shops, and supposed to cure everything!  My Dad told me this.... But I think I remember them having Ephedrin in them? 

Fuzzy, is there any way we could make you feel better?  Man!  Do they ever offer you any kind of anti-depressants, or is that something they have already tried? 

Feeling hopeless AND helpless has got to be the worst.....  hugs to you...... 

sas-schatzi

Chevy, thanks for sharing your story, with the MRT food testing, my list ihas 6 in the RED zone, 24 in the Yellow zone. Prior to the testing I had suspicions about certain foods, but no outright signs of an allergic response as you did with the ER trips. Yours is a severe immune response>>histamine release that triggers the whole allergic cascade, some of your responses have been just this side of anaphylaxsis which is cardiorespiratory collapse due to the severest antibody antigen response. Actually in saying that, have you got a medic alert braclet and epipen. Seriously, you should talk with your doc. The fact that you had to receive epinephrine in the ER-duh, I should have had this thought then(Epipen). I'm in the phase ---kick me in the head with the problem and it'll cause the right info to fall out LOL.

On the Omegas Udo Irasmus's PHD. , book is "Fats that heal, and Fats that Kill". Try the library, it's what I call the bible on omegas and fats,Insulin resistance, cell wall functioning, Cholesterol and lipid function, so much that explains so much why illness occurs. The forward and preface are a must read b/c he teaches you how to read and use the book. The first chapter is heavy duty biochemistry. He states in the forward that he did this purposefully b/c he wanted Doctrate level folks to see that the material is based scientifically. For us regular folks he says pass it by LOL.

Supplements are so divergent in who takes what and why. What each IMHO tries to do is make sense of what is there, if orthodox medicine isn't supplying what we preceive we need, we turn to what is considered alternative. Outcome of both orthodox and alternative is unknown really until all is over. AND even then it's an unknown b/c each body is so different. What I do believe that we have made it as a species over tens of thousands years b/c we learn to observe and the respond to what is around us.

Cousins here and up toodles L&H's sheila

sas-schatzi

Fuzzy, will check in later, thinking of your dilemma, been there most all my life.

ridergirl

SAS the info that you can just pull outof a hat is soo amazing to me considering that I can't remember what the hell i walked in to a room for right now?  Did you go through that phase ever or no? And if you did, is that a good sign that some of my memory will come back when the chemo is done?

(((hugs)))

sas-schatzi

Rider--sure did, sometimes I would pray to get through the next minute.  09&10, were pretty shitty. We both had cancer. Chemo(1) nearly killed me, Dh had been dx'd with lymphoma, the 4 typical sx's for boobs & his chemo, then Dh had 10 hospital admissions in 2010. Then passed. Then brain tumor started growing in 2011. Then brain sx in 2012. Sucked. My mind that was once pretty good, couldn't hold on to things and it was scary. Gave up on reading. No ability to comprehend a single paragraph, even with rereading several times. 2012 in summer(?),I noticed that I could read and hold on to info more, not the same as in the past, but I'm hopeful that it keeps improving. So, yeah HOPE, as DBF would say "It's a good thing".

If you read the link on the genetics info, the scariest in that late time of 09 into 10 mind was the worst. Uncontrolled pain, depression, fiasco after fiasco. Then when I found Genelex, I was trying to learn what I didn't know to apply it to DH's meds b/c I knew enough that all his drugs were bumping into each other and fighting for pathways in the liver. Was able to put together a drug plan that the MO, cardiologist, pharmacist couldn't-wouldn't. With a mind that wasssn't worKing! That's why I feel so strongly about the genetics. It will guide them all, to the right drug plan, instead of guess work. Dh by statistics should have lived for only 5-6 months after dx b/c of a certain gene that if present in Lymphoma is a death sentence. He lived 16 months. 4months longer than the average for those that had a stem cell transplant. I think it's b/c of the drug management. Who knows? Surmising.

Do know coming to BCO saved my sanity, and away from dispare(sic?).

thefuzzylemon

Howdy!! Hey, thanks for listening to my crap. I think I've accepted that no one can help and...that's ok. I wouldn't really want anyone to experience what I went through, go through and what its done. So, I've set a course. Keep moving forward...find that next step. I WILL figure this out. I will straighten out all this twisted shit in my head. So, thank you again for letting me just say what I need to say...how I need to say it...you are all great therapy to me!! I don't know what I'd do without you.

dunesleeper

The is the only place I have found where people seem to understand my emotional roller-coaster rides and are able to communicate that to me. I've tried Al-Anon, counseling, psychiatrist, friends, and my mother. My mother let me cry on her shoulder, but she admitted she could not understand. The others think they understand but then so easily lose their patience with me. And, yeah fuzzy, there ain't no magic wand. I spent most of my life waiting for shrinks to pull that magic wand out of their desk drawer and make me all better. I just knew it was in there somewhere, and if they would just understand how bad I hurt, they would pull it out and use it. They never did (although they did pull out the occasional "have her picked up by the cops and taken to the hospital" form). Sorry, I forgot the name of that form. I had one shrink who told me he had a stack of them just form me. How very nice!

Rider, damn, I'm sorry you got this terrible news. I guess you need to get as much information as you can to make your decision. I don't know that any of us can know what we will do until we are faced with having to make the decision.

I've been thinking a lot about that lately myself. On Monday I go for the ultrasound. This will be the equivalent of everyone's first mammogram after the cancer and operations and treatment. It is nearly a year since I found the cancer. You know how I am. I have pretty much convinced myself that they will find something. And then I will be faced with having to make a decision. Thinking about that terrifies me. However, if something shows up, I will be forced to conclude that my natural treatment did not work and then I will have to decide whether or not to do the chemo.

On that note, I'm gonna take another xanax.

SherylB

dunesleeper,

I have been where you are for most of my life. Have dealt with depression since I was a kid, addiction my whole life (food, gambling, retail therapy, and substance). I always said I wish I could become a sex addict because the 12-Step meetings would be more interesting. LOL. Spent many years in therapy and the form you are referring to in Florida is called a Baker or Marchman Act, they get to lock you up against your will for at least 72 hours if you are a threat to yourself or others. The funny thing is that I have been a successful human being who has contributed to my life and others, because the problems I have and the emotional pain are all on the inside. I have put on a brave face and tackled the world. You are so right the only ones who can really understand the pain are folks who go through the same or similar stuff. For me it is my friends that I have met in 12-Step meetings. Do they make it go away? ABSOLUTELY NOT! But sharing with someone who has walked the walk usually feels good and freeing.

This cancer has been a whole new ball game. I have to reveal to my doctors that I have a history of substance abuse and when I request pain meds because of the surgeries, my perception is that they think I am drug seeking, (my perception, no one has actually said so). The way the mind of an addict works is relly weird too. It is hard for me to say that my pain is as bad as I think it is or that my brain is telling me I need more opiates. Just another issue to deal with.

Facing my own mortality has made me realize that I do want to live and I want to find joy and peace. It's funny (weird) that I haven't asked myself, why me? I believe that life has to slap me upside the head for me to realize what is really important. Cancer has also shown me how important I am to others and how much they care. So really cancer has been a gift and a blessing for me. Now I still think it sucks the big one. I have lymphedema and cording on my left breast and armpit. I have a port site on the right put in 8 days ago that put me in the hospital 2 days later with severe cellulitis, IV antibiotics and more pain. I have a really sore right arm from IV's that infiltrated and my arm is swollen and sore. On top of that I am scared sh...tless about chemo starting on Thursday, my port site is so sore that the thought of them accessing it make me want to puke. It's kind of ironic that cancer has been a blessing and a curse for me, however, the lesson is that I am on this ride and not getting off till it's OVER!

Hang tough girl, try to find gratitude (I know that makes me crazy when someone says that to me), look for people less fortunate, and find what you are blessed to have. OR NOT!! Totally your choice.

I love you and everyone else who is in pain especially emotional pain, the pain pills don't take that away. I have probably shared way more than anyone wants to hear but sharing for me takes the power out of the pain.

Sheryl

ridergirl

Sheryl in my mind there is no such thing as sharing too much...or too little on this site. Thats why we're here, to listen and learn together from whatever we aech feel up to sharing. Sounds like you have some other issues on top of the b/c that make it even tougher to deal with, but also sounds like you have a great attitude which cis sure to help you along

In any case, come here with whatever you need to bring along and someone will be here to listen, encourage or whatever we can do.

(((hugs)))

Linda-n3

Fuzzy, I may have missed your posts on why you are feeling so hopeless and sad, but I have also been there much of my life.  I often get the overwhelming feeling that NO ONE can help me, and that is when I feel most hopeless and panicky.  I am participating in a face-to-face support group in which we are not allowed to give any advice to anyone else, but we are invited to work on "being in the present moment", and we do a lot of mindfuless-based work.  We are all at different stages of cancer (not everyone with breast cancer), but the principles and concepts are the same.  We are all facing our mortality, uncertainty, pain, frustration, changed relationships, fear.... and we are getting through it minute-by-minute some days, and I have fewer and less severe episodes of panic.  I have developed a philosophy for pessimists:

There are no good days.  And then there are worse days.  But each day has at least ONE MOMENT of grace. 

That moment of grace may be joy, peace, laughter, faith insight.  It may be a soft breeze, a sunrise or sunset, beautiful sky, birds at the feeders, a cat purring in my lap, a text from DH or a friend, a song on the radio, or a half hour "wasted" on some TV sitcom rerun.  It could be the feel of putting dishes into the dishwasher and seeing a clean kitchen counter, smelling clean laundry coming out of the drier.  It could be finishing an unpleasant taks like filing or making a phone call to the insurance company.

DH suggested that we each write down at least one thing each day that brought us pleasure or was at least a good moment, and I put mine in a crystal biscuit (cookie) jar on my kitchen counter.  I love crystal, and this piece usually sits tucked away out of use, but now it is something that is pretty and I like looking at it.  And I can pull out those little slips of paper on days when I feel really bad to help me remember that not all of life is bad.

I have been guilty of being ungrateful for my life.  Recently I have wondered what people will say about me after I'm gone, and I was thinking of all the wonderful people who I have loved and are no longer with us, many of whom died from various types of cancer.  What I realized is that they gave so much of themselves, even when they were ill, and I remember them as kind, loving, funny, and a couple just completely outrageous.  I would rather be remembered this way than as a grumpy, complaining, bitter woman, and I often see myself this way, even when others may not.  I think a lot of it has to do with how much lovingkindness we can give to ourselves and not just others. 

I may be rambling and not saying this very well.  But there is so much love in this world if we open our lives to it.  That love is all around us, and can help us each minute, but we have to remind ourselves that it is there.  It is when we forget this that we become hopeless and miserable and afraid.  We are a very powerful bunch of women here on BCO, with an infinite amount of love to share, and I want you to remember that.  Fuzzy, no matter what, you are loved and we are here for you.  I am sending you a million virtual hugs and much love, along with prayers that you may be free from fear, free from pain.  And that goes for all the rest of you, too!

dunesleeper

I go for my ultrasound tomorrow morning 9:30. I'm wearing clothes with lots of pockets.

dunesleeper

Sheryl, thanks for your share. Remember to take us with you to your chemo on Thursday. Keep letting us know what you are doing and how you are feeling. I'm sorryabout your sore arm and port site. Does anybody else know if it is normal for the port site to be so sore?

Fuzzy, I hope I will be seeing a post from you soon. Is your mom doing OK?

Linda-n3

Dunesleeper, I will be with you for ultrasound.  Sheryl, will be thinking of you on Thursday also.

thefuzzylemon

Hello most amazing sisters....Cheryl, its true...this is a safe place to say it/drop it/set it free any way you want!! Welcome and thank you for your story.

Ya know, its ok...and really a kind of blessing...that I have to get through this without help (ok, I can't say without help...you all help me every single day...the professionals can't help). No one should be put in a position to know how I got where I am...its ludicrous to think about the environment and conditions that sent me here. But, you called it....I'll get out of this and probably be better than ever...stronger, louder and hell bent to make wrongs right! It almost feels like I slapped myself and said, "dumbass...did you think fairydust Would work???" LOL or a magic wand!! Nope. This is par for course....this is my battle and I can finally get ready for it...and I have an army of sisters beside me!!

In your pocket!!! You bet cha!!

Goooood luck at chemo!

I love you all so much.

thefuzzylemon

Oh...mom is still in the hospital but she is slowly progressing in the right direction. Whew she's getting crabby but..who Could blame her!! LOL. Its been over 2 weeks!

dunesleeper

((( Fuzzy ))) You loon!

I'm glad you feel ready to get ready for it. LOL. Make sure you let us know how we can help. I know it is your battle, but keep remembering that we are here to help when you want it.

It was a pretty day here in Baltimore today. Not cold. Not damp. There was actually sunshine. Mom came over here for her birthday. It was her 78th. She wouldn't accept the camera I bought her, so I have to return that tomorrow. I cooked her dinner, which turned out pretty good. She didn't get a cake since I avoid sugar, so I sang happy birthday to her over stewed pears and blueberries. LOL

Your mom is STILL in the hospital. Ugh. Is the food any good there? LOL If I have to go back in the hospital I hope someone will bring me some good food. Franklin Square Hospital has crappy food. I like the way they treated me. I liked my room. I liked the people in outpatient surgery and the whole setup there. However, I really didn't like the food. Still, the absolutely worst hospital food was in Johns Hopkins in 2009. I was in the Burn ICU and can you believe they gave us SMOKED SAUSAGE???? OMG! Smelling that smoked sausage with my back and arm being all crispy, I thought, WTF! Why in God's name would they send SMOKED sausage to a BURN unit? Disgusting!

thefuzzylemon

((((Dunes)))) I'd loooove to have you sing to me over those little yummies!!!! How sweet you are!

You know, that's the beauty of all of us here, together...you help me without asking...selflessly give stories, thoughts, ideas, experience, love, hugs...all without asking. What I need is just what you are...:)

XOXOXXXXOOOO

thefuzzylemon

OMG!! SMOKED SAUSAGE IN THE BURN UNIT!! WHAT THE HELL WERE THEY THINKING???? OMG THATS GROSS!!!

ridergirl

Dunes i will be in your pocket for ultrasound tomorrow, and for anyone else who needs me. Thursday I go for all this bullshit to see if I am going to have hip surgery so any and all company will be greatly appreciated

((((hugs all))))

dunesleeper

You gotit Rider. I'm a little scared about tomorrow, so I do appreciate the pocket party.

And LOL at Fuzzy. Really! What could they have been thinking? Every morning that they served them that burnt smell would linger throughout the unit. It really did seem like a sick joke. But I can laugh about it now. LOL

crog234

Dune I am in your pocket tomorrow.....



Cindy

Anonymous

Me too! I'm in the pockets too.

sas-schatzi

Just throw me a line and Ill climb in. sassy

Wren44

In all pockets. Looks like a busy week. I have to agree about the sausage. WHAT were they thinking?

ptdreamers

Dune and Rider I am in both of your pockets. Waiting for results of my MRI.

heymoose

Wishing you both good luck and I am in your pockets.

Hugs, Cheryl

ridergirl

Pt right there waiting with you ((((hugs))))

Alyson

 Hoping all tests go well for Dune and Rider. Holding your hands and anyone else who is waiting on results.. Have been reading but not commenting as I have been helping DD1 proof her doctoral thesis. DD2 has been as well, thank goodness as she has a PHD in English. DD1 now has to do her final recital.

Am approaching checkup time again and have several queries for the docs. I am tired all the time and have severe pain in shoulder and collar bone. Just wish they could find out why. I know I have joint pain from RA but this is different. Shouldn't complain as I know I am lucky to be here - its six years next week.

Big hugs..