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Author Topic: Can I donate my still-living (but somewhat worn) body for medical research?  (Read 74681 times)

Offline Karen W.

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Yeah we still have lots of pollen and the weather is warm although I am so cold its nuts! My dog gone fingers are blue...! Feels damp outside and the sun is currently hiding.. its overcast but I hope it burns off soon as I am cold!..

The horse sounds pretty.. you should post a piccy someday when you get your camera working again!

Hope you are well!

Those horses are smart and they do have minds of their own.

Have a nice day.
 

Offline OldDragon

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Sorry to learn that you feel so cold. Here the weather is wet, but still really humid.

This is the youngster - photo was the last I took before the camera broke...
I've hogged her mane (and Merlyn's) since it was taken, as there are masses of burrs around at the moment, and I was having to spend two hours a day disentangling them from their manes, and then kept on getting little infections in my hands from where the burrs were hooking into my fingers - and I can't afford for that to happen at the moment.  :( Actually, they both look quite smart hogged. Was concerned afterwards over what my grandson would say, but he liked Bron's 'haircut' and announced that he wanted one too!  :D Kids, eh?

It's strange how, when in my stuation, one starts really looking at the little, practicalities of life.

Still not caught up again with all the work related things, though. That all seems never-ending, but it helps to be keeping busy.  :)

 

Offline Karen W.

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She's beautiful Alison...How old is she?

Yeah I am pretty practical for the most part, but I think it stemmed from necessity more then anything.. the frugality part too! LOL.. I have just started to indulge myself more these days.. as if I don't I may never know what thats like! LOL..

Yes I know what you mean with the infections....I have to be real careful right now too.. especially cuts and such!

Alison.. I had some trouble at the physical therapists office the other day.. and was wondering have you ever experienced any thing like this...

 She was giving me a evaluation you know checking for the range of motion for my legs knees hips etc...

 She asked me to brace myself on the wall and stand on one foot..... right? Easy piece of cake.. so I looked at her and went to do it but it was as if I couldn't remember how... I could see myself doing it like I have always done but when the message went from my head to my feet I drew a blank and could not figure out how to do it.. I felt confused and disoriented.. I kept asking her tell me what you want me to do... and she repeated and showed me with her body and I still could not do it.... It took me ten minutes to stand on one foot once I was there I was really wobbly..

OK then she asked me to stand tip toed raising my heels up and holding that position ... I could repeat back the instructions but could not get my brain and feet on the same page.. as if I had forgotten how to operate my feet!! I was so frustrated that I started to cry.. and I don't know why!... I tried to introduce a very old friend of the family to somewho stopped by and I mean this guy was always here at the house Bobs friend..2 or 3 times a week.. But I looked at him smiled and said Sharon this is a ______________ ! I could not remember his name known him 20 years very well... but All of a sudden I did not know him by name.... Can meds do that... Its been happening a lot...lately... I am even having trouble keeping the year right... you know the date?? It is becoming more confuddled in my head...I think I am loosing my mind! LOL..(but not really so funny You know!)

I have not had a chance to talk with my Doctor yet but I will.  Has that ever happened to you?? I have to go at 2:00 pm today for another session at physical therapy! It is sort of intimidating.... I was so embarrassed!!!
 

Offline OldDragon

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The filly is 2 years old now, Karen.

If you have FM, Karen, then what you described doesn't surprise me at all. It has happened to me loads of times - although not since doing the IBT trial! (Could it be related to a lack of sleep?

I have often confused the date - especially when writing cheques. I really have to concentrate hard when tired and doing such things. As for names and words - yes, my mind has often drawn a blank, and the more frustrated I become as a result, the worse it gets.

In the early days of FM, one of the symptoms I kept asking the doctor about related to my legs not working when I told them to, and as if the messages just were not getting through. It was on one such occasion that I ended up falling as a result and breaking my elbow. ::)

« Last Edit: 01/08/2008 18:36:37 by OldDragon »
 

Offline Karen W.

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FM? Is that Fibromyalgia (spelling)? I don't know what is causing it but it is unnerving.. I have also had several bouts of cramps where my whole body was cramping.. calves front of shins feet toes thighs, buttocks back lower and upper as well as both arms all at the same time.. I couldn't move.. It hurt so badly.. I have never experienced a pain like that.. my whole body cramped and it litterally took my breath away.. Rob had to stretch my legs out and push on my toes trying to get me stretched out of the cramp.. It took 20 minutes or so.. I was crying so bad and I could not even describe the pain.. I was sore for 2 weeks all over my body.. and for a week every time I tried to move a Charlie Horse started and began to try to spread all over...I am scared and need to talk with the doctor Monday about it its happened 3 or 4 times now.. and I don't want it to continue....
 Think about the worse Cramp you ever had if had and then think about one in every muscle across your body at the same time... I don't know what is causing it but When it happened last I asked my physical therapist if she knew why that might be happening and she said Tell the Doctor right away so Monday I will! She said it could kill me .. ...I thought she was nuts but she explained to me about the heart being a muscle and what if it cramped to... I never thought of my heart like a muscle like that until yesterday! That scared me...too.. I am glad we were talking about cramps.. as I got one there.. on her table.. while exercising. She looked at me like I was nuts and said .. you did go to the doctor didn't you.......I said for the big body cramp.. No.. I cried and thought Wholly cow.. Now I know how bad cramps can really be.. and thought I best increase my potassium... but I did not because I thought I would wait till she did the new blood work...

 I am thinking low potassium might do that?

I haven't slept well last few weeks... days of no sleep then a 12 hour sleep just very sporadic...

The date thing is bad.. like what year is it? uh I don't remember.. some days I do remember...body parts not working when I try to move them.. its very weird..

They sent me to the medical supply to pick out a 4 wheeled walker with a seat as it seems that my hips have a lot of degenerative arthritis severe.. she said my walking on the treadmill has only made it worse.. and she started me on some Biomechanic exercises that will take the impact off my hips and strengthen the gluteous maxi mus, or buttocks muscles.. and that big muscle coming down the front of my thighs to the knees.. My knees have another problem they have some kind of grissley sounding thing happening when I bend them and all the other parts are popping loudly when walking.. pelvic bone hips and knees.. so we have to strengthen before we walk cause right now it is just grinding away the bone...This walker has 4 wheels a couple hand breaks and a seat with a basket so instead of falling down I can sit when I can't walk any more....

 It seems like a big cumbersome pain in the behind! In the mean time I have a metal single sided 4 footed single armed walker that hold your arm.. it is supposed to help take some of the weight from the hip joint! which is fine.. but it is awkward and I am having trouble keeping the cane part in step with the foot step.. I haven't figured it out yet... do I step first then move the cane or move the cane then step.. Its all confusing.. sometimes I step faster then the cane moves.. LOL.. Its confusing and stairs are a booger!

It's not like I can't walk I can.. but am supposed to remove some pressure from the hips.. we will see how it goes..


The Philly is pretty..

 I am sorry you had broken your elbow.. Man I am nervous and wish they would figure out what all is going on... seems something new all the time.. as if whatever I have is spreading or progressing very fast!

 My Great grandma was crippled by some kind of disease.. I don't know what it was but at the last few years was in a walker then finally sticken to bed... My grandma had heart problems and died in the hospital the night before her trip to Stanford.. she took a saved up mess of medication and killed herself! She had enphasyma also with other problems she was a chain smoker also! My Mom was too!

 I just want to go and get some answers.. I want to know everything thats wrong .. and I do not want it swept under the rug... I can't fix things if I don't know what all is wrong..

I just hope that at least some of it is resolvable.... if not at least perhaps the painful parts anyway...

sorry.. I think I am rattling .. am just a bit scared thats all..

feel like a condemned person...  I don't have all my affairs in order and am trying to line up all my ducks..... Caught my self thinking about who I care about enough to ask to be with my daughter should she ever decide that a baby may be in her future... I want to find someone to give her some good Mommie advice....... and help her when her time comes to be a Mom..She is really going to need help.. first time she has to clean up feces or puke she is going to fall apart.. God help her if The doctor has to give the baby a shot! LOL.... Oh my.. I so wanted to be a grandma..... and Laugh at her as she learned to be a Mom too..

 sorry... I am so dang nervous....

« Last Edit: 02/08/2008 10:52:49 by Karen W. »
 

Offline Karen W.

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Hi Hope your weekend is leaving you feeling better still.  Its been very Hot here and I have had a slow weary day.. I did not sleep again last night and its already 12:30 am an I am not sleeping yet.. I tried for two hours earlier around 7:00 pm but no go! Will try again soon...

Hope you are sleeping and getting some good rest! HAve a nice Sunday and good morning to you!
 

Offline OldDragon

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I seem to have lost a post here... probably only typed it in and forgot to hit the post button!  ::)

Anyway, I do hope that you are feeling easier now, Karen, and less stressed or bothered by sleeplessness.

I overslept on the morning I was due to start the chemo, so had a rush and no chance even for a cup of tea before flying out of the house! My son had been supposed to drive me to the hospital, but I couldn't reach him on the phone at all, and he was three-quarters of an hour late by then. I decided to drive myself there and worry about getting the car home later if unable to drive it myself then.

Funny how slowly the rush hour traffic seemed to be travelling... or maybe how fast my ancient old Merc can glide along when it gets the chance? (Did we pass any speed cameras???  [8D] )

Whatever, I was in and having the chemo by the time my son arrived at the hospital to look for me. Discovered then that the terror of a grandson had finally woken his father at 9am to tell him his phones had been making an awful racket, so he had switched them off!  ;D Nice one, eh?

Yesterday, I didn't feel too clever following the chemo, but much more myself today, so hopeful this will keep up, and I'll not find it too bad. Finding my mouth is a bit sore and I am really thirsty for cool, refreshing drinks... funny how suddenly everyone else around me wants the same ones I like, when normally they go for the horrible, sweet variety I hate!  :-\

« Last Edit: 06/08/2008 18:33:18 by OldDragon »
 

Offline Karen W.

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I seem to have lost a post here... probably only typed it in and forgot to hit the post button!  ::)

Anyway, I do hope that you are feeling easier now, Karen, and less stressed or bothered by sleeplessness.

I overslept on the morning I was due to start the chemo, so had a rush and no chance even for a cup of tea before flying out of the house! My son had been supposed to drive me to the hospital, but I couldn't reach him on the phone at all, and he was three-quarters of an hour late by then. I decided to drive myself there and worry about getting the car home later if unable to drive it myself then.

Funny how slowly the rush hour traffic seemed to be travelling... or maybe how fast my ancient old Merc can glide along when it gets the chance? (Did we pass any speed cameras???  [8D] )

Whatever, I was in and having the chemo by the time my son arrived at the hospital to look for me. Discovered then that the terror of a grandson had finally woken his father at 9am to tell him his phones had been making an awful racket, so he had switched them off!  ;D Nice one, eh?

Yesterday, I didn't feel too clever following the chemo, but much more myself today, so hopeful this will keep up, and I'll not find it too bad. Finding my mouth is a bit sore and I am really thirsty for cool, refreshing drinks... funny how suddenly everyone else around me wants the same ones I like, when normally they go for the horrible, sweet variety I hate!  :-\



I have done that with my posts before.. and the back key saved me.. There have been times where they just vanished and I think I dreamed I made a post to a certain thread... LOL
 I hate traffic like that.. it does sometimes seem to be forever before it moves along!

Well thats a new excuse..LOL.. I think I better try that one out on someone! LOL.. Glad he finally made it though!

Yes when my mom did her Chemo she got a very dry mouth also.. She did not do so well with it... But times are better and there are so many things to do to ease the side effects.. Like the anti nausea that they add.. It used to be they would not give you that unless you paid extra for it , but it was so hard on the system that the anti nausea worked well even at the price!

Well I bought a bunch of green tea to try with some honey we will see how I like it!

Hope you are well!

I am sorry you felt badly that day and hope you are doing some better. Just keep on going... I am sending good thoughts to help you along!
 

Offline Karen W.

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I am guessing you are not feeling so hot and I am sending as many good wishes to you in hopes you will soon feel better. Hang in there..Alison!
 

Offline OldDragon

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Thanks, Karen.  :)

I am hanging in there. Have a few rough days but those largely brought upon myself! (My head is always out to get me.  ;D )

I went to town last Thursday in the car and to pop in the computer shop then collect another case of the elderflower and springwater drink that I find so refreshing. Went in late and parked in a disabled bay along the exit road, bit stupidly front end in and up against the wall. I usually park that way, as then it's my tow hitch left hanging out over the end of the bays, which aren't made for darned great old estate cars/station waggons! Mine's a big old Merc, and there are many around who are a bit prejudiced now against disabled drivers, big cars and even women!  :D Whatever, when I got back to the car, the exit road was in rush hour mode, and I just couldn't be bothered with the hassle of throwing my car's weight around in order to force someone to let me out. Instead, I had a snack with me, a can of the spring water and wasn't in a hurry. Had warm sunshine of my shoulder, a comfy seat and wasn't in a rush.  Stupidly decided to rest my eyes while waiting... and woke up four and a half hours later! Doh!

Had been wearing my wellies, intending to feed the horses on my way home, which I then had to do by moonlight and a torch, and was very aware of a niggling pain by my right knee and the wellies being very tight. Yes, I'd brought on phlebitis!

As I'd also been laughing my head off over the stuff coming in for Bed Blockers (screenplay/black comedy and about Andrew's IBT - but set in a crazy geriatric commune/residential car home) off the writing team's members) I'd started triggering my back off again and into spasms.  ::) Same old story - sleep disorder kicked back in, too! Trying now to get that back under control but at least it gave me the opportunity to get my own doctor in on the act/team, so he'll get to read the draft script, and even if he's officially only on the team in an advisory/consultancy role as a medical professional, as almost all of the writers involved are inclining their beds and noting any improvements or otherwise in whatever they may be doing it for, or basing characters on people's real case histories when using IBT, at least that part of the screenplay will be real! (In fact, as everyone writing appears to have been typecast, the lines between fantasy and reality and becoming somewhat blurred! However, when I counted all the submissions for sex scenes yesterday, those numbered 50! Alas, Lots of the most unlikely of fellows seem to be experiencing erectile dysfunctions! Not so much the usual ones - more the opposite problem!  :D

But enough of my activities and my batty bits of fun, how are you doing, Karen?
 

Offline Karen W.

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Hi Alison..
  Glad you are hanging in there! I know about them rough days.. and I do know that my attitude on those days and my inability to rest completely plays a big part in it! Yes I think our heads do tend to do that to us! LOL..

  That is quite a surprise isn't it! I have had rounds to town made a couple of stops,and had to park somewhere lock my doors and lie down and rest.. The time does get away from me.. have had just that happen and it is quite surprising..I just need to stop and can't move another minute without a break!

Is phlebitis some kind of inflammation.. as I do not know exactly what it is?
I am sorry though.. I have knee issues this week myself my therapy is making my knee caps hurt real bad when I walk.. am now confined to a walker if It is more then just hobbling round the house.. I can manage inside on my own.. according to me.. LOL.. The Doctor says use the walker  but I hate it.. it is awkward big and hard to maneuver in my home! LOL If i used it inside that would mean I have to rid my house of lots of collections.. LOL... I need a Ebay Honey to Help me get rid of some stuff! LOL...Anyway the walker is helpful out and about, be it awkward or not.. takes the pressure off my hips and knees..It is hard on my shoulders however but at this point I am losing use of both shoulders and my hips and knees... I am determined not to give in to this.. I am having trouble with muscle tissue as well as bone deterioration.. Dr. Thinks he has found something and my next trip down.. will hopefully be a revealing trip...
 The anti-inflammatory the Doctor put me on is finally helping with some of the pain issues although at night I am still having to take 1 powerful pain killer to sleep , as my shoulder is in bad shape by evening.. But down to 1 pain med a day is really good as it was 4 a day before sometimes less if the arm was feeling better...

 Anti-inflammatory helps.. its a herbal one that will not hurt my liver or kidneys!

Sounds like a good screen play! :) That is so cool.
I am sorry your back has acted up again and I hope you can get it all back under control.. Sometimes pain control is hard when so many things can trigger spasms.. I am sorry to hear that!

%o submissions for sex scenes.. LOL.. I don't doubt it! Hee hee! Gee Maybe I should meet some of those dysfunctional Guys,, LOL.. LOL.. Just kidding... Maybe! LOL..

I feel pretty good today, Just very worried about a friend, and some personal problems.. I am trying to deal with....

The weather is weird has rained and been sultry and doesn't look as if it knows what to do out there today..

I went to my kiddos graduation yesterday.. at the preschool... All of the children I was teaching were graduating.. they all made me a "we miss you Teacher Karen" video.. brought me to tears.. I miss them so bad... and now they are are gone moving to kindergarten... I guess they are good tears as well as sad.. It sure doesn't take much to bring them on lately...
 I wish I could share their Video.. but privacy will not allow it.. in public view.. But it was very touching and so sweet!

Hey Alison..

why did the Boy Bubble Chase the Girl Bubble??? Cause he wanted to see her BUST! LOL..LOL..

I heard that the other day somewhere and I loved it! LOL.. So simple and cute... LOL..

Well Hope you are well today and smiles are in your heart! Stay strong!



   
   
« Last Edit: 24/08/2008 00:20:21 by Karen W. »
 

Offline OldDragon

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Phlebitis is an inflamation, Karen, and in my case of the varicose vein below my right knee. It's caused because the valves in the vein are compromised and don't work properly. By falling asleep in the care wearing those wellies which put pressure on and further constricted the circulation there, with my legs bent as they were, blood became trapped between the vein's valves.

Besides antibiotics to help prevent an infection, I have cream to apply and that helps to breakdown any blood clots to prevent thrombosis. I think it's officially termed 'thrombo-phlebitis', when of the nature mine is.

At least it's responding to the treatment, but my own fault entirely for bringing it on this last time. I have such a history of it, that I should know better!

Glad to hear that you have been able to get out a bit, even though being around the children must bring out many mixed emotions.

Physically, I've been quite up and down of late, but still trying to keep busy - just at a steadier pace than normal! I find that jusy being able to take small steps to deal with things that I can manage, a bit at a time, is better for me that feeling daunted or down over the amount of things I can't manage at the moment. At least then a little progress can be seen and that gives me a boost.

So far I've managed only three part-car loads of things transferred to the new workshop/storage place, but it's a start.

I also seem to have managed to get the back spasms back under control again witout having them escalate into their really bad stage, and when I have to resort to the steroid anti-inflammatories.

I'm trying to address my sleep patterns now, so that the hours I sleep are more on a par with the 'normal' world's! I seem to have a lot of early morning (for me) hopsital appointments coming up, and as I often find I don't sleep at all until 5 or 6 am - waking and getting up, and then through rush hour traffic to the hospital for 9am is a nightmare! Lol

I have my second chemo cycle tomorrow, and was at the clinic yesterday ofor blood tests etc., but at least those all showed that my blood count and immune system has recovered okay from the first cycle three weeks ago. Thankfully, I don't have to be at the hospital until 2pm tomorrow, but will still need to arrive their early, so that I can get a parking space! Think I'll plan to have lunch there, as they do nice meals in the dining room, and very reasonably priced. It will save me needing to cook, and I can always take a book... or fall asleep (as I often do) in the waiting room! The nurses there were cracking jokes yesterday about me having nodded off in just about every area or room they have put me in so far! Lol At least I can laugh, but however true, is it such a bad thing to be relaxed enough about it all to nod off? ;D
 

Offline Karen W.

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Phlebitis is an inflamation, Karen, and in my case of the varicose vein below my right knee. It's caused because the valves in the vein are compromised and don't work properly. By falling asleep in the care wearing those wellies which put pressure on and further constricted the circulation there, with my legs bent as they were, blood became trapped between the vein's valves.

Besides antibiotics to help prevent an infection, I have cream to apply and that helps to breakdown any blood clots to prevent thrombosis. I think it's officially termed 'thrombo-phlebitis', when of the nature mine is.

At least it's responding to the treatment, but my own fault entirely for bringing it on this last time. I have such a history of it, that I should know better!

Glad to hear that you have been able to get out a bit, even though being around the children must bring out many mixed emotions.

Physically, I've been quite up and down of late, but still trying to keep busy - just at a steadier pace than normal! I find that jusy being able to take small steps to deal with things that I can manage, a bit at a time, is better for me that feeling daunted or down over the amount of things I can't manage at the moment. At least then a little progress can be seen and that gives me a boost.

So far I've managed only three part-car loads of things transferred to the new workshop/storage place, but it's a start.

I also seem to have managed to get the back spasms back under control again witout having them escalate into their really bad stage, and when I have to resort to the steroid anti-inflammatories.

I'm trying to address my sleep patterns now, so that the hours I sleep are more on a par with the 'normal' world's! I seem to have a lot of early morning (for me) hopsital appointments coming up, and as I often find I don't sleep at all until 5 or 6 am - waking and getting up, and then through rush hour traffic to the hospital for 9am is a nightmare! Lol

I have my second chemo cycle tomorrow, and was at the clinic yesterday ofor blood tests etc., but at least those all showed that my blood count and immune system has recovered okay from the first cycle three weeks ago. Thankfully, I don't have to be at the hospital until 2pm tomorrow, but will still need to arrive their early, so that I can get a parking space! Think I'll plan to have lunch there, as they do nice meals in the dining room, and very reasonably priced. It will save me needing to cook, and I can always take a book... or fall asleep (as I often do) in the waiting room! The nurses there were cracking jokes yesterday about me having nodded off in just about every area or room they have put me in so far! Lol At least I can laugh, but however true, is it such a bad thing to be relaxed enough about it all to nod off? ;D

Thanks Alison.. I did not know that could happen in or around a varicose vein. I am sorry your nap created such a problem!Good that the treatment is working this time.. I take it it doesn't always work?

Yes I loved seeing the kids and the parents.. it was amazing seeing them leaving sooooo soon. It went so fast being away from them.. I do feel a bit cheated.. Is that bad... I wanted to be able to complete what I started with them and I feel like I messed up.


I wish you were feeling so much better. It is very difficult to be so up and down and emotional roller coaster is a hard ride.. I wish you better and understand!

Well three loads is very good.. You beat my record... LOL... Now I have someone to catch up with... YAYYYYYYYYYY! Motivation.. Thanks Alison.

Sounds like you have a lively clan of doctors and nurses there to keep you smiling.. Awww you should experiment while you are dozing in different parts of the room and see if you dream different kinds of dreams in different places in the room..?

Looks like we both have our sleep all messed up.. I give up trying to fix it.. LOL.. I am too tired..  I just go to sleep any time I can anymore as if I don't I feel horrible not sleeping really takes the wind out of my sails and my functioning level drops off to nothing! I make mistakes can't remember things correctly and today I spent a long time trying to remember my forum password.. Now that is just not something I forget! BUT I did less then an hour before I typed it in and was posting.. then boom when I came back to sign in I lost it.. I had a real good cry as I feared I was never going to be able to keep my head about me to get back in... I was hot and miserable so that probably did not help was a bit dehydrated.. my dang pills creep up on me and then the heat socks it to me and compounds my water intake..problem..I forget to drink more liquids.. today I had a glass of water and a 8 or so ounce glass of green tea.. then I was blahhhhhhhh it hits you fast then its too late and you need help.. I hate the really hot weather!

Please be safe in the traffic traveling to and from Chemo.. You really should have someone drive you if possible.. I remember your son was going to that day and was late.. do you usually have a ride? I hope so! I went yesterday and had a whole battery of Blood tests done for Stanford yesterday.I hope it was enough.. I have not much left to give em.. LOL I just feel like a pin cushion thats all...

poke poke poke poke poke!!!! They might as well just open their mouth and bite me! It might be faster! Better find a nice handsome Doctor that is a part time vampire and do a little necking.. LOL Might be more fun!

I hope you get some rest and all goes well for the weekend Take care Alison.. be well.







 

Offline OldDragon

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I don't feel too bad today, Karen, thanks, just need to be handy to the bathroom, but did manage to do the poultry, although got a friend to see to the horses for me.


The roller-coaster ride I mentioned is more of a physical that an emotional one, though. I have so many things to try and get done, so not knowing from one day to the next how I might feel makes it difficult to make plans. Still, two chemo sessions down now and only more to go... then the radiotherapy and hormone treatment... Hmmmm
 ;)

Let's hope we ca both get the sleep thing sorted soon. I think it must have been around 5am before I go off to sleep yesterday morning, and I feel now as if I've only just had lunch!  :D (I have!) It's no wonder I get days and dates mixed up! Not at all sleepy now, and it's nearly 1am here already - I thought it was about 10am! Where does the time go?
 

Offline Karen W.

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Alison.. Tell me about radio treatment do you mean radiation? If so I have just never heard it called Radio treatment, but assume thats what it is?

 I do understand the physical roller coaster I have been doing that for over a year now and it is really hard to handle.. Just take it one day at a time.. thats what a friend impressed upon me.. and to my surprise that is what has helped me so much!

Hope you get your days and nights sorted out..

I really don't care when I sleep anymore as long as sleep comes. I have had to take my sleep at face value and whenever it comes its good no matter when .. That way I don't go crazy trying to remember the last day I had any sleep.. if I try not to dwell on it I feel better...
 Am glad you were not feeling bad today and am hoping tomorrow goes as well!

HUGS YOU...

 I spent the evening in Eureka having a pot luck Mexican dinner with old friends and watched goofy old sci-fi movies and just came home.. it is 1:08 AM. Not very tired!
Tried to blow the candles out on my Birthday cake and had an episode with chest pain and severe coughing.. I took a big breath and went to blow and good grief couldn't breath worth anything felt as though when I blew the air out that it wouldn't refill my lung and got really sharp pain in my chest and in my lung area.. If I didn't know better I would have said my lung felt as if it had collapsed.. I felt like I couldn't get air... scared the soup out of me.. I  was able to get my inhalers and try to inhale .. had barely enough air to get any in... but then after a couple minutes it lightened up and the pain got better and I was able to breath better..which was great..! I think I just emptied my lung or irritated something I don't know!

Boy I tell you... Blowing out candles is for kids..!!! LOL.. At that rate its good there were not 48 candles on that darn cake! Took me ten minutes or so to get it all calmed down.. then I was fine..  I am fine and felt fine after breathing was better and the pain subsided... so weird...

Anyway made it to year 48.. so now I need to work on 49 LOL.. ;)

I hope tomorrow is nice for you and the sun shines in more ways then one!  :)
 

Offline OldDragon

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It could be different terms for the different sides of the pond, Karen? I don't know that much about it ye, but have been told I'll need a number of 'radiotherapy' treatments after the chemo, and understand that these are short blasts of radiation to the area that was affected by the tumours that have been removed. That's only for a very short duration and carefully targeted, but on a daily basis and for about three weeks, I think.

I don't know about blowing candles out on a cake, but 1/2 hour of my grandson earlier this evening, and I feel exhausted! I don't know how teachers cope with maybe thirty of these three year olds, I can't cope with one!  ;D Know the feeling though about the pain of taking a deep breath, only in my case it comes from my back and just manifests itself in the chest!

Today's been a really chaotic day here, lots of things causing disruptions to plans, and the rain's not helped. Can hardly believe it, but I'm about ready to head off for an early night already! Just as well, as loads to try and do tomorrow, due to things going pear-shaped today. ::)
 

Offline Karen W.

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Yeah Thats radiation therapy.. They usually give you a couple very precise tatoos for the machine to aim at then they are able to set the machine precisely in place so it is only targeting the spots it needs to hit... It is a pretty precise thing.. and I am sending you good wishes that you will do well.

I am glad you visited with the grandson.. they have tons of energy don't they.. Being a preschool teacher is tons of fun and lots of work for most people but I found it exhilarating and way fun! Kids are the best!

I hope tomorrow finds you rested and you are able to manage your days activities without wearing your self out.. Pace yourself and be careful..

Lots of hugs
Karen

 

Offline OldDragon

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Pace myself? Chance would be a fine thing! It has been a manic day, Karen, and pouring with rain too.

I managed to see my doc today, despite the raptor receptionist who refused me an appointment until next week - when, incidentally, my doctor is on leave! (One of these days I really will write a letter of complaint about that woman!)

I'd actually written a letter to my doctor, and took it up to the local surgery, where the receptionist there is lovely and the daughter of a friend. She took my letter straight through, along with the eggs for the doctor that he likes, and it seemed he wanted to see me! Felt bad, as I was queue-jumped straight in but could easily have waited.

Whatever, he wanted just to check me for signs of dehydration, because I'd mentioned in the letter about the low body water percentage, and he was satisfied I was okay that way. The other thing that being on the IBT trial and with people following my case study there had been suggesting - no, insisting - that I spoke to my doctor about was the possibility that I have arachnoiditis? I'd dismissed that originally, as I've not had spinal surgery or an epidural, which is what some were asking me about, or directing me to websites that were dealing with that aspect.

BINGO! The doctor only had to look back through my medical file and to see for himself what various other doctors in the practice had recorded over the years, and the symptoms I'd presented with, to realise that the medical research and qualified people on here were very probably correct.

We had a little chat about it, but I was able to say that, for now, and with the history that I have of these symptoms, even though it is incurable, at least I feel that between us we have the measure of it as it affects me, and it's under control. At least with that diagnosis now on my records, it may make any surgeons, or 'Dr. Gods' I might encounter later on, pay attention and listen to me when I tell them my back's a bigger concern to me than the cancer!

Had a long chat on the phone tonight with Andrew, which was nice, although he probably thinks I burned his ears a bit on a few things ;D  Aim to pass on some more stuff of Andrew's to my doctor, who seems to have certainly eaten his words now about my oedema getting worse on IBT!  He's really amazed how much it's helping me and has seen the evidence in front of him, along with the records of my stats to back it all up. I don't think he has ever been able to actually SEE the bones in my legs before, but now I can even feel the old chip's and injury sites on my shin bones and from riding accidents I've had (kicks and various collisions with jumps/fences etc) that date back to my teens! 

One more thing that I have noticed, and was told that IBT can help - my eyesight seems to be improving! Yes, really! Weird as it sounds, I was borderline for needing glasses to drive with last year when tested, but couldn't see the instrument panel dials well enough to read them clearly, as I'm very long sighted. Today, my specs kept steaming up with all the rain, and when I drove from the fields and seeing to the horses up to the doctor's, I took the specs off and suddenly realised I could read the numbers on my speedo!

Whatever, despite having had it confirmed about the arachnoiditis, I feel really good at the moment. Nothing's really changed, anyway regarding the back, and because I've lived with it for years anyway, so there's no point getting down on that score. Better, surely, to look at the positives that can result from the diagnosis, and all the other things that I feel are coming along better.
 

Offline OldDragon

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Today, I am definitely having a 'weak and wobbly' day. Immune system likely on the floor, I guess. Started shivering last night and just couldn't stop. Crawled into bed with a heat pad and two dogs, plus extra jumper and two duvets... what a shape to get into, eh? Crawling around from one bit of furniture to the next today.

Hard to believe what a difference a few days can make. Think I'll hibernate until the system picks up again! ;D
 

Offline Karen W.

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Today, I am definitely having a 'weak and wobbly' day. Immune system likely on the floor, I guess. Started shivering last night and just couldn't stop. Crawled into bed with a heat pad and two dogs, plus extra jumper and two duvets... what a shape to get into, eh? Crawling around from one bit of furniture to the next today.

Hard to believe what a difference a few days can make. Think I'll hibernate until the system picks up again! ;D

Yes..Rest you need. If you need anything else that I can help you with... Please don't hesitate...
maybe a goofy story or two or just a hug...There with you anyways.. you know.. please rest up and dream sweet dreams... tonight... by the way ...Stanford is known for quality care but should also be known for some seriously brutally handsome young Doctors!!!  Lol....
Put on some good music and relax..... I'll be here when you are feeling some better....
hee hee as if thats any consolation. .Lol...  Keep your chin up! Feel better soon Alison... Hugs to you!
« Last Edit: 10/09/2008 02:08:48 by Karen W. »
 

Offline OldDragon

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Now, a nice pic of Raphael Nadal's muscles just might work wonders, Karen!  ;D I felt sorry for him being beaten by Andrew Murray in the US Open the other day - and that even though I'm part Scot! (Blame it on my hormones, I guess! Lol)

Yes, you are right, Karen, I do need extra rest at the moment. Went to bed early last night, then woke up at 5am this morning. A friend came in to lend a hand around 9.30, and left about noon, after which I felt ready again for another nap, and slept most of the afternoon, too. Will be ready for my bed again soon, too.

At least this should pass by next week, and as my immune system bebuilds itself again.

For now, though, I'll just try and listen to my body and go with the flow.
 

Offline Karen W.

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Now, a nice pic of Raphael Nadal's muscles just might work wonders, Karen!  ;D I felt sorry for him being beaten by Andrew Murray in the US Open the other day - and that even though I'm part Scot! (Blame it on my hormones, I guess! Lol)

Yes, you are right, Karen, I do need extra rest at the moment. Went to bed early last night, then woke up at 5am this morning. A friend came in to lend a hand around 9.30, and left about noon, after which I felt ready again for another nap, and slept most of the afternoon, too. Will be ready for my bed again soon, too.

At least this should pass by next week, and as my immune system bebuilds itself again.

For now, though, I'll just try and listen to my body and go with the flow.

OH my He is baby faced and young enough to be one of my children! OH MY!! He is cute! LOL..

Yep I blame lots on the Hormones.. LOL... Just kidding...but maybe not!

I am glad you are listening to your Body.. sometimes it takes a bit longer to rebuild that immune system.. so really rest!..

I have finally gotten some good sleep at odd hours but sleep none the less and it is good!


Well I hope you rest good tonight and have a good day tomorrow... I missed physical therapy this morning due to lack of sleep and a headache.. I finally got to sleep and slept soundly.. so much so I woke ten minutes before an 11:00 am appointment that was 35 minutes drive away.. so I called and will go on Thursday!
I have woken with a headache for three days even after just nodding off for minutes.. I think it was the lack of sleep... Feel slightly better head wise this evening!


Big Hugs to You and feel better!

karen
« Last Edit: 10/09/2008 02:19:01 by Karen W. »
 

Offline OldDragon

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Hope your headache's now disappeared, Karen?

It turned out that I'd managed to inflame a spinal root nerve rather well, and after paying attention to one of the cancer doctors, who was concerned about me taking the aspirins at the same time as the chemo would be affecting my blood! Now the next chemo cycle's had to be delayed a week while I get the spine back under control again!  ::)

Ended up having to get my doc to do a house call yesterday, and he's now prescribed Gabapentin to try and damp down the muscle spasms, as I've been feeling as if a horse has booted me in the ribs, and as a result of all the cramping chest spasms!

Yesterday I felt as if I'd an alien attempting to chew its way out of my armpit and where the last lot of surgery was! (Try explaining that to a doc and watch the cogs turning and him wondering if he should send for the men in white coats with the straight jacket!  :o  ) I am just glad  it was my own doc on duty, as he, at least, knows what I mean! ;D
« Last Edit: 17/09/2008 19:43:19 by OldDragon »
 

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Offline Karen W.

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Hope your headache's now disappeared, Karen?

It turned out that I'd managed to inflame a spinal root nerve rather well, and after paying attention to one of the cancer doctors, who was concerned about me taking the aspirins at the same time as the chemo would be affecting my blood! Now the next chemo cycle's had to be delayed a week while I get the spine back under control again!  ::)

Ended up having to get my doc to do a house call yesterday, and he's now prescribed Gabapentin to try and damp down the muscle spasms, as I've been feeling as if a horse has booted me in the ribs, and as a result of all the cramping chest spasms!

Yesterday I felt as if I'd an alien attempting to chew its way out of my armpit and where the last lot of surgery was! (Try explaining that to a doc and watch the cogs turning and him wondering if he should send for the men in white coats with the straight jacket!  :o  ) I am just glad  it was my own doc on duty, as he, at least, knows what I mean! ;D
Hi Alison.. It come and goes.. been getting them in the mornings and in the late evenings seems to be spiky blood pressure! I am keeping record and it seems to be starting when my blood pressure has risen!

OH dear.. thats not good.. I hope that you a have been able to get it under control this last week? I am sorry that it has been so very painful...I have never heard of
Gabapentin, is it a muscle relaxant? I am so sorry the chest spasms are terrible if they are anything like mine... They are uncomfortable and very painful. I wish you so much better!
 I would  and do known exactly what you meant by that..You describe things similar to the way that I do.. nice job! That is miserable pain and I wish I could do something to help you with it... I cry a lot.. and try all sorts of things but when you get off on your pain meds you tend to get a lot of bleed through pain and then its hard to get it under control again... which really sucks...
 

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