Okay--This is too much!!!

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saluki
saluki Member Posts: 2,287
edited June 2014 in Life After Breast Cancer
I can't make excuses or jokes about this any more. This is the second time I've burned myself badly on the stove and just forgot to tend to it between the stove and walking to the bathroom for the Silvadene. My sister came into my house yesterday and was horrified to see all the blistering on my arm. I had not only forgotten to tend to it but forgot that anything happened.

A few months before I'd been in the Breast surgeons office
and he looked at my arm wondering how I'd gotten another nasty burn. He said that must have hurt bad. I joked as I do have RSD that pain is relative.----but I still find it disturbing.

It's not that I don't feel pain when it happens. And I guess after a few minutes it may get hidden in the pervasiveness of my chronic pain. But thats not the point.

That I could completely forget within the time it takes to walk a hallway to at least do the basic care --run it under water to get the heat out---put some Silvadene on it.

These are such basic things and I'm 4 years out from chemo.
I mean this no longer comes under the classification of
chem-brain but to me brings into question my very ability to take care of myself.

Bad enough, to be afraid to answer the phone because of the creditors on the other end of the line not because I don't
want to pay my bills but because I haven't a clue where any of them are. I can't figure out where the mail is disappearing between the door and the time it hits my hands.

And since I went cold turkey off most of my meds because of the liver enzyme issues I cannot even blame it on that.

I am working very hard on systems that will give me clues and hints on focusing but frankly its an unending challenge.

I did hear last night at the BCO online conference about a
supplement called Phosphatidylserine that may help.
Has anyone heard of this? And, if you have taken it has it helped? I'd appreciate any experience you may have as I am sooooo frustrated.

I would consider the Panax Ginseng since it has shown some promise but it sounds too dicey for me since I am ER+/PR+.

Its just not funny anymore------

Susie
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  • LiveForToday
    LiveForToday Member Posts: 311
    edited July 2007
    Susie, just sending you a big cyber hug from Arkansas. I am so sorry that you are having such a bad time. You are such an inspiration to all of us with your posts and you are always encouraging someone else.

    We are all here for you...sorry I don't know about the supplements but someone else will.

    lots of huggs, Sherry
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  • JoanofArdmore
    JoanofArdmore Member Posts: 1,012
    edited July 2007
    Susie, I so know.
    I'm thinking it's the femara.Because I was NOT this way after tx.
    In fact I wasnt this way after 2 years on femara/AI.
    "Cognative difficulties", on the Femara insert? I think this comes under that heading.


    I dont burn myself, but I live mostly on salad--a hard trick to burn one'sself making salad.I do make simple things like sauteed chicken and fish, but "can MANAGE this."
    BUT: I am constantly stopping still, and standing in a spot, and asking myself out loud "What did I come here for?"
    Thank GOD, it actually comes to me, after I bit.
    That's my advice: refuse to move until it comes to you why you went there (from the kitchen.) No copping out that you came to go potty.You just have to keep standing there.

    I've been having nice luck wih WFs bee energy thing, and ALA, and Acetyl-carniine(which Edge recommended instead of plain L-carnitine.)
    I also find it helps to refuse to wander away until I recall WHY I am there.

    Good luck. I hear you. j
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  • saluki
    saluki Member Posts: 2,287
    edited July 2007
    You are right Joan--Hard to burn yourself on salad.

    But its human nature that when you feel a little better you try a little more--

    I've lived on nuked food so long--half because I couldn't stand long enough to cook it--the other because I'd forget to turn the stove off and burn everything---At my worst, I put a paper plate in the toaster oven and turned it on and walked away!

    I am such a foodie---I just wanted to do something I truly enjoyed. I've spent so much of the last 4 years adapting
    to this "new reality".

    I Guess no more "Chicken under a brick" for me!

    Haven't done the Bee energy but I do take the Source natural combo of Acetyl L Carnitine and Alpha-Lipoic Acid.

    Separately I also take "R" Dihydro-Lipoic Acid

    It sounds right to stand there till it comes to you why you went there in the first place but I often don't come up with that same reason but get side-tracked by another.

    Well for better or worse I just ordered the Phosphatidylserine--little concerned as it has some soy lecithin. The other issue is how it will interact with the Sam-e

    I'll let you know if it helps.

    Thank you so much for the kind words and encouragement Sherry.---Some days "normal" seems so far away.
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  • LiveForToday
    LiveForToday Member Posts: 311
    edited July 2007
    You know, I don't really think there is a "normal" for us anymore....we just adjust to each day and pray for a better day tomorrow! But, we are still here, just different!!

    huggs, Sherry
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  • Sachi
    Sachi Member Posts: 351
    edited July 2007
    Susie, I've met you...we've talked... I've read all your intelligent, insightful replies to others. What you're saying here does not sound like the Susie I know. What supplements are you on? I know you said you've stopped the meds - is femara all you take? It just sounds like something is interfering with your memory. We all have memory lapses...I have them many times a day... but to be burned and to forget to treat it? That doesn't sound like you. Have you talked to the doctor?

    I'm sorry - I don't mean to make you feel worse. I just don't think what you've described sounds like the usual you.

    take care, Barb
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  • Hope_M
    Hope_M Member Posts: 261
    edited July 2007
    Dear Susie,

    You know, it may be time to request some cognitive testing referrals from your GP or onc. What you describe does seem beyond the norm. I'm not sure what could be done, but there are tests which will establish how far off "normal" you are and I would not be surprised to hear that there are therapies to help you.

    Good luck,
    Hope M.
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  • cmb35
    cmb35 Member Posts: 1,106
    edited July 2007
    Susie - I don't have any specific advice to offer, but I'm sorry you're having a bad time, and I can certainly commiserate (sp?) My son has significant attention/focus/executive function (processing/decision making) issues and I now understand what it's like to not be able to pay attetion, absorb information, or know what the heck you went upstairs for! I'm almost 2 years out of chemo, and not on any meds now.

    I hope tomorrow is a better day...
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  • saluki
    saluki Member Posts: 2,287
    edited July 2007

    I wish I could say it hasn't been an issue but it has. My Doctors have been working to help me focus and I recently, had to give up what little remained of my job because there was no way of me focusing for any amount of time.

    Thats why they put me on Strattera an ADHD medication---to get me to focus, and it helped for a while--unfortunately it pooped out on me and stopped working and it can be toxic to the liver.

    They also put me on Provigil whose only prescribed use is for Narcolepsy and time shifting. It was amazingly helpful
    but insurance will not cover it at $400 a month for my dose.
    So when the samples were at an end, so was my functioning.

    My Docs idea was to use it for special occasions when I have to function.---talk about reality check---

    Its been an issue since chemo--not like this, but add the distraction and fatigue caused by the RSD; And who know's what additional cognitive effects have come from 4 years on Femara.

    I caught a gander of my arm in the mirror and realized why Arlette was so alarmed. Hence, my totally frustrated posting.

    Yes, I went off everything but my Blood pressure meds. The Femara I've been off for 2 and a half weeks but went back on tonight.

    My supplements have all been not only Okayed but encouraged
    by my Doctors.

    I'm hoping as the medical community becomes more aware of this they will come up with ways to treat it and maybe find out and do studies on what supplements could help.

    At the very least they could push the FDA to approve Provigil for cognative dysfunction caused by chemo and other conditions.

    That would force insurance to have to pay.

    I'm not sure its as much of a memory issue as it is one of focusing---

    You are right Barb--It certainly isn't me which is why its so frustrating.
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  • BlindedByScience
    BlindedByScience Member Posts: 314
    edited July 2007
    Susie, if Provigil worked then you know there's help.

    http://www.provigil.com/patient/reimbursement/reimbursement.aspx

    The link above will take you to Cephalon's page on getting reimbursement for Provigil. There's a number to call and they will try to help you get the insurance company to cover it. As you mentioned, ADHD and chemobrain are off-label applications and insurance doesn't have to pay for it for those uses, but...maybe the drug company can give you a strategy.

    Failing that, the link below is for people who cannot afford to pay for Provigil because they have no insurance or meet other criteria. This program is supported by the "National Organization for Rare Disorders (NORD), a not-for-profit organization dedicated to the identification, treatment, and cure of rare "orphan" diseases". While chemobrain isn't exactly an orphan disease, there isn't an approved treatment either. I'd give it try if option 1 falls through.

    http://www.provigil.com/patient/reimbursement/assistance.aspx

    If all that fails, we'll just have to figure something else out!
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  • saluki
    saluki Member Posts: 2,287
    edited July 2007
    Thanks BBS, I'm thinking NORD may be viable for me because although, Chemobrain may not be considered rare orphan disease RSD is considered rare, without an approved treatment, and lack of focus is one of the hallmarks of RSD.

    Thanks for the advise. I'm going to discuss it with my Doctor.

    Mind you, It would be nice if this Phosphatidyl Serine would work and I wouldn't have to deal with any more SE's from crazy meds. LOL

    Personally, I think I have a memory like an elephant and as strange as it sounds, I think the whole issue is one of complete lack of focusing ability except for a crazily limited amount of time.
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  • NoH8
    NoH8 Member Posts: 2,726
    edited July 2007

    OMG, I thought I was the only one who did tha, although our stories are a bit different. I usually burn my fingers or thumb in the toaster oven.I attribute this, in part to neuropathy, because my hands don't usually feel the heat until they've been close to or on the burner for a few seconds. I also have to wear oven mitts when I use a big knife, because I went through a period of time where I kept cutting my thumb and forefingers. I also did an airheaded thing by dropping the knife and catching it on the blade mid flight. My dr sent me to a neurologist to be checked out after all that and, of course, they found no problems.

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  • saluki
    saluki Member Posts: 2,287
    edited July 2007
    Amy--My Life in the past few years has become a constant search for adaption---I probably should put a thread up as some of this stuff I've found could conceivably be helpful to others.

    The stove is not the place for me as there are some sections of my RSD affected arm that have no feeling at all---Wouldn't you know it was the good arm I burned (don't know if you guys would consider that arm good since its the node arm).

    Oven mitts are out for me since you can't touch my thumb never mind try to bring a glove near it.

    But as I often do also what you describe in the oven and particularly the toaster oven---I ordered this yesterday.
    It looks like it will be a good work-around.

    http://owgd3.onewebgroup.net/Merchant2/m...KIT_Oven_Puller

    http://candochefs.com/oven-rack-push-pull-ruler.html

    The Ruler type has a magnet on the back so it can live on the fridge--or the oven I suppose.

    For the knives I'm safer with a mini food processor that lives in my regular food processor---quite handy these days.
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  • wallan
    wallan Member Posts: 1,275
    edited July 2007
    HUGS to you.... it is disconcerting when you have memory problems, isn't it??

    I am working on my PhD and need my memory. But its gone--ALOT. Its embarrassing too. I mean, I am explaining research results or something and I can't remember technical terms or even sometimes I stop in the middle of a sentence because I can't remember what I am talking about it. People at school thing I am losing it, I swear.

    And I regularly forget things at home too. All the time. I had chemo 3 years ago now. But I have also lost all my estrogen due to ooph and AI.

    You just gotta laugh at yourself...

    Wendy A
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  • saluki
    saluki Member Posts: 2,287
    edited July 2007
    Wendy
    Congrats to you. I have often thought how much I would enjoy auditing some classes but taking on another degree with these learning disabilities has to be a huge undertaking.

    I have boundless admiration for you in attempting to do this.
    Can I ask what field?

    Yes, you have to laugh.

    I was roaring with laughter the day the SSD determination came in--I was approved and it looked like they weren't expecting my functioning to get any better since they don't want to re-eval me for 5 to 7 years.

    Allot of gallows humor.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007
    Susie, gee I'm so sorry you're going through this and worrying about it. I'm hoping you can either get the med you think will help or that the supplement helps. Lord knows I'm always doing something stupid.

    Thanks for posting the above links. That looks great for us who are afraid of getting burned while getting something out of the oven. Would even make a nice little Christmas gift or stocking stuffer.
    Shirley
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  • Toronto
    Toronto Member Posts: 118
    edited July 2007
    I just hate being awkward. I fumble around with the bags at the grocery story, can't get the d##m things open. Anything that requires fine motor control is beyond me. My handwriting is atrocious. I am amazed that the bank lets checks I write go through because at time I can hardly hold a pen.

    My sense of balance - just isn't. Walking up 3 steps with out a handrail on them is like a highwire act for me.

    No one ever talks about this stuff to others. I always just say "I'm fine", cause I figure that's all people really want to hear anyway.
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  • JoanofArdmore
    JoanofArdmore Member Posts: 1,012
    edited July 2007
    "I just hate being awkward. I fumble around with the bags at the grocery story, can't get the d##m things open. Anything that requires fine motor control is beyond me. My handwriting is atrocious. I am amazed that the bank lets checks I write go through because at time I can hardly hold a pen.

    My sense of balance - just isn't. Walking up 3 steps with out a handrail on them is like a highwire act for me.

    No one ever talks about this stuff to others. I always just say "I'm fine", cause I figure that's all people really want to hear anyway."

    Did I write this?Dont remember doing so, but it's all my truth.Too.
    Might sdd "it is all people want to hear, and discussing it wont help anyway."
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  • junie
    junie Member Posts: 1,216
    edited July 2007

    Saluki--check your PMs--I'm trying to get you re-connected to SusieQ from big A!!! hugggssss, junie

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  • NoH8
    NoH8 Member Posts: 2,726
    edited July 2007

    Thanks Saluki-- I'll look into them.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007
    Quote:

    "I just hate being awkward. I fumble around with the bags at the grocery story, can't get the d##m things open. Anything that requires fine motor control is beyond me. My handwriting is atrocious. I am amazed that the bank lets checks I write go through because at time I can hardly hold a pen.

    My sense of balance - just isn't. Walking up 3 steps with out a handrail on them is like a highwire act for me.

    No one ever talks about this stuff to others. I always just say "I'm fine", cause I figure that's all people really want to hear anyway."



    Then Joan writes:

    Quote:

    Did I write this?Dont remember doing so, but it's all my truth.Too.
    Might sdd "it is all people want to hear, and discussing it wont help anyway."



    ME TOO!
    Shirley
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