Re: Colleen, check out this link re removal of ulcerating tissue

[Guest guest]

Thanks ,

The doctors have removed tissue each time the I & D my leg and it still

happens over and over again. I just tried talking to my mom about

things and she just walked away. I tried agin thinking she might not

have heard me and she did the same thing.

It is offical though I am getting a new spot on the top of my scar on

my calf. That brings the count to three. The one in the middle of the

scar on my calf is open and draining and my knee is starting to peel

open where the last spot to close was. Ugh.

Oh well no use crying over spilt milk...it could be worse.

~Colleen

*A few fries short of a happy meal, something like PG and an immune

system is good for nothing*

(does that work for what i have... )

[Guest guest]

rebecca,

i have to " object " , your honor...nicely of course, hee, hee.

pathergy. there is too much risk of the ulceration spreading like

wild fire the minute you put a knife to it.

infection. this is not an infection. you can treat it, won't hurt,

but won't help either...waste of $$$.

i know you are suggesting an alternate, but i think with colleen's

dx wavering pg, not pg, pg, not pg......well, close enough we know

it is some form of autoimmune related subcutanious ulceration that

does not respond to much of anything. most of these don't unless

you get out the heavy artillary drugs like i am on.

all in good spirit,

love,

jeff

imed class of 1999

cd, class of 2000

pg, class of 2001

>

> Hi Colleen,

> I just found this

>

> link with reference to Panniculitis

> <http://www.dermnetnz.org/dermal-infiltrative/panniculitis.html> :

>

> http://www.dermnetnz.org/dermal-infiltrative/panniculitis.html

> <http://www.dermnetnz.org/dermal-infiltrative/panniculitis.html>

>

> [Panniculitis]

> <http://www.dermnetnz.org/common/image.php?path=/dermal-

infiltrative/img\

> /pan-feet.jpg> [Panniculitis]

> <http://www.dermnetnz.org/common/image.php?path=/dermal-

infiltrative/img\

> /s/pannic2.jpg> [Panniculitis]

> <http://www.dermnetnz.org/common/image.php?path=/dermal-

infiltrative/img\

> /s/pannic3.jpg> Panniculitis

> Treatment

> Treatment includes:

>

> * Treat the underlying cause, if known (e.g. stop a

medication,

> treat an infection)

> * Rest and elevate the affected area

> * Compression hosiery

> <http://www.dermnetnz.org/procedures/compression.html> (18-25mm Hg

> pressure) if these can be tolerated

> * Pain relief using anti-inflammatory medications such as

> aspirin, ibuprofen or diclofenac

> * Systemic steroids

> <http://www.dermnetnz.org/treatments/systemic-steroids.html>

(oral or

> injected) to settle the inflammation

> * Anti-inflammatory antibiotics including tetracycline

> <http://www.dermnetnz.org/treatments/tetracycline.html> or

> hydroxychloroquine

> <http://www.dermnetnz.org/treatments/hydroxychloroquine.html>

> * Potassium iodide

> <http://www.dermnetnz.org/treatments/potassium-iodide.html>

> * Surgical removal of persistent or ulcerated lesions.

> *******

> Your doctor might want to remove the ulcerating area before doing a

> drastic amputation. I have never heard of anyone having surgery to

treat

> EN, which normally doesn't ulcerate, but it could prove to be

useful

> where the inflammed area is the same spot all the time,

>

> Love,

>

> idio. EN '68

>

[Guest guest]

colleen,

sounds like you don't have much support from your mom. that has got

to be tough.

don't mean to sound like a dad or granddad here, so please, i beg

your forgiveness if i do......

go to where your support is. where there is none, there likely will

never be any (sorry for being so straight forward). i doubt your

mom's response was a surprise to you. you know, i think we all end

up dealing with this with family members at some point.......it

sucks. butttttttt, we find out who our true friends are when we are

in need, especially emotionally. and you know, it works in the

reverse as well. but, for example, just because you are supportive

of a particular person, does not mean they are capable of returning

the favor. keep that in mind.

i have to tell you a little story. when i was in so much pain a

couple of years ago, i think my wife learned something about herself

she never knew and so did my daughters. my pain and suffering, and

being 100 miles away in u of m medical center hit home. all of a

sudden dad was struggling, i mean really struggling. i think my

wife really struggled with the situation and in the end found out

how important it was to be my " best friend " . it changed our

relationship that day a certain way that gives each of us a certain

amount of respect for one another. life is fragile and we have to

be there for each other. you never know what that entails or how

demanding that may be until you are faced with it. we joke about it

today now.

moral of the story? some people can't deal with other's pain and

suffering, and for some reason, it always seems to be someone close

to you or a family member.

okay, stepping off my soap box now.

your friend,

jeff

>

> Thanks ,

> The doctors have removed tissue each time the I & D my leg and it

still

> happens over and over again. I just tried talking to my mom about

> things and she just walked away. I tried agin thinking she might

not

> have heard me and she did the same thing.

> It is offical though I am getting a new spot on the top of my scar

on

> my calf. That brings the count to three. The one in the middle of

the

> scar on my calf is open and draining and my knee is starting to

peel

> open where the last spot to close was. Ugh.

> Oh well no use crying over spilt milk...it could be worse.

> ~Colleen

> *A few fries short of a happy meal, something like PG and an

immune

> system is good for nothing*

> (does that work for what i have... )

>

[Guest guest]

Jeff`

I always welcome your 2cents.

Yes I know anything could happen anywhere else on my body but for

the fact that I had to have surgery to have a cut down done to put

in a PICC line and nothing happened with that scar or when they had

to do a few things to get my Hickman in, again nothing happened.

None of my spots from PICC lines have done anything but leave the

normal scars…It is just from my knee down on my right leg. Again I

know anything can happen but what is life without risk sometimes? I

know this seems like a really stupid risk but I have done A LOT of

thinking. This is not just something I came up with over night. Plus

I never said I was defiantly going to do it. I was just seeing if

anyone else had done it and see what they had to say about it.

As I said in a message to , I do know of someone who WOULD do

it. I am still thinking and IF I did anything I would most likely

wait until this summer because I would have time to heal during the

summer before returning to school. I have mentioned having an AKA

done numerous times but my parents tune me out. I have some very

close people that I have talked to about having an AKA and we are

weighing out everything. I have a great friend that has been given

the name Superwoman because she too had her own set of medical

problems and the doctors could not figure her out. We spent many

nights crying together, laughing at the doctors stupidity and

talking about how it felt to go from doctor to doctor and endure

procedures just to find out they are even more confused. We decided

when we both were diagnosed we were going to take a trip to

celebrate, a little treat for ourselves. Well she got diagnosed and

the trip was what kept me going. Our plans were being finalized when

my diagnoses of PG went the way with the wind. So goodbye to that

trip but a new one will come with time… As I said before this is

something that I have spent A LOT of time thinking about and just

wanted to see if anyone else had done it to hear what their

experience was.

I know that in life without pain you will gain nothing. The fact

that I am getting a new spot, my pain seems to be getting worse (as

it always does in the colder weather) and the fact that I was

invited to go out for my friend's birthday and couldn't because of

my leg just made me decide to see what others here had to say about

it. Trust me Jeff I know you know what it is like and your not

talking the talk without walking the walk.

As for grand rounds, they became even more confused then they

originally were. Things they thought I didn't have now are coming

back, things they said I had, they now say no… In other words they

are still super confused. I am supposed to go back on the 6th of

December to hear what they have to say or see what they want to

try. If they are still clueless and have no suggestions except to

give them more time, I am not going to be a happy camper at all. If

I do find out something I will be extreamly happy, it would be an

AWESOME birthday present (since the next day I turn 19 :/ ).

I am still chugging through some days better then others but I have

not given up yet. Just taking it one step and one hobble at a time.

~Colleen

*a few fries short of a happy meal, messed up leg and an even more

messed up immune system*

[Guest guest]

Hi Jeff, Colleen and Group,

That's right, Jeff. I forgot about the pathergy aspect. And I agree

that cutting off the offending area is no guarantee that it won't pop

up elsewhere. In fact I mentioned Colleen's post to Hubby and he said

" So what does she do if it starts to affect someplace else? " I have a

feeling that until the trigger is adequately addressed, PG or similar

autoimmune probs, will just keep expressing themselves. Of course I

have not experienced the excrutiating pain that our PG members have,

so I feel reluctant to make any suggestions, but I hope that

amputation will be the absolute last resort and done only after

everything else has failed.

The post about learning who you can count on in your time of illness

and need is so right on target, Jeff. YES that is a wonderful lesson

to learn. In fact, that part about how some people you are supportive

of are not able to be supportive of you is another keen observation. I

don't think anyone needs to suffer to learn these important life

lessons, but as long as you are going through it, you might as well

get some value from the experience. Like it or not, you WILL learn who

your truest friends are and who can and who can't support you.

Case in point, my girlfriend's sister had breast cancer. Their Mom

could not help. All she did was " bitch " about how horrible it was that

cancer struck her family. Like it was a blemish on their perfect

family health. Her dtr suffered 5 yrs. before her death a few months

ago. Now Mom is devestated by losing her dtr. It was all about her,

not her dtr. She simply could not be supportive. She is now in

psychotherapy trying to learn to cope with her loss. I just mention

this to illustrate that unfortunately these kinds of scenerios are all

too commmon.

Ok, I finally got my bathtub--but the color is wrong and I had to

reorder it at Home Depot. Lesson learned: don't shop at night and look

at your colors in the natural daylight, not under flurescent light. I

had to pay a 15% restocking fee to learn that lesson. Some lessons are

cheaper than others ;-/

Love,

idio. EN '68

[Guest guest]

Colleen,

Even though I am hoping that you find an effective and less drastic

treatment than amputation, I want you to know that I'm here to support

you in whatever you decide.

Love,

idio. EN '68

[Guest guest]

Thanks ,

I hope that the doctors can figure out whats wrong with me and get it

under control but if it comes down to it ...

Everything everyone does, involves some sort of risk. I myself have

weighed out the idea of whatever I have spreading and that thought

doesn't make me happy at all. What if I do have my leg removed and it

spreads...at the same time...what if i have my leg removed and it

stops whatever is happening from reoccuring? Life is about taking

chances.

~Colleen

*a few fries short of a happy meal, bad leg and even worse immune

system* ( I have to come up with something better for my sign off)

[Guest guest]

Wise advise Jeff. It's actually a relief to move on once we realize that our support and sympathy aren't going to come from the place we had expected. A word of caution: we have to be careful not to let bitterness root in our hearts for those who, for whatever reason, aren't there for us. Bitterness that goes unchecked will do more damage to us than we ever dreamed! Cheers!KimJeff wrote: colleen, sounds like you don't have much support from your mom. that has got to be

tough. don't mean to sound like a dad or granddad here, so please, i beg your forgiveness if i do...... go to where your support is. where there is none, there likely will never be any (sorry for being so straight forward). i doubt your mom's response was a surprise to you. you know, i think we all end up dealing with this with family members at some point.......it sucks. butttttttt, we find out who our true friends are when we are in need, especially emotionally. and you know, it works in the reverse as well. but, for example, just because you are supportive of a particular person, does not mean they are capable of returning the favor. keep that in mind. i have to tell you a little story. when i was in so much pain a couple of years ago, i think my wife learned something about herself she never knew and so did my daughters. my pain and suffering, and being 100 miles away

in u of m medical center hit home. all of a sudden dad was struggling, i mean really struggling. i think my wife really struggled with the situation and in the end found out how important it was to be my "best friend". it changed our relationship that day a certain way that gives each of us a certain amount of respect for one another. life is fragile and we have to be there for each other. you never know what that entails or how demanding that may be until you are faced with it. we joke about it today now. moral of the story? some people can't deal with other's pain and suffering, and for some reason, it always seems to be someone close to you or a family member. okay, stepping off my soap box now. your friend, jeff

> > Thanks , > The doctors have removed tissue each time the I & D my leg and it still > happens over and over again. I just tried talking to my mom about > things and she just walked away. I tried agin thinking she might not > have heard me and she did the same thing. > It is offical though I am getting a new spot on the top of my scar on > my calf. That brings the count to three. The one in the middle of the > scar on my calf is open and draining and my knee is starting to peel > open where the last spot to close was. Ugh. > Oh well no use crying over spilt milk...it could be worse. > ~Colleen > *A few fries short of a happy meal, something like PG and an immune > system is good for nothing* > (does that work for what i have... ) >

[Guest guest]

kim,

thanks, and you know, i was just thinking that after i sent that and

had wished i had put that in. thanks for the reminder and a valuable

point about this whole thing!

jeff

>

> Wise advise Jeff. It's actually a relief to move on once we realize

that our support and sympathy aren't going to come from the place we

had expected. A word of caution: we have to be careful not to let

bitterness root in our hearts for those who, for whatever reason,

aren't there for us. Bitterness that goes unchecked will do more

damage to us than we ever dreamed! Cheers!

>

> Kim

[Guest guest]

colleen,

i know you didn't ask my opinion. i will give it anyway. at this

point this would be a very bad decision (okay, punch me in the nose

now). i know i shouldn't say that, i " tend " to speak what is on my

mind (and sometimes, yeah, i do get in trouble).

the pain level i went thru, well, you saw my pics. i knew i had to

wait it out for an answer. what bothers me is you still have not

been on any kind of immunomodulator therapy. this whole thing just

frustrates me so! the more i think about this, the more angry i get

over the lack of starting a treatment option.

i understand the frustration and i am totally baffled as to why your

grand rounds did not come up with a treatment plan of some sorts,

and i would have though an immunomodulator program! dang, enough is

enough already!

love,

jeff (still shaking his head.....maybe i am a few french fries short

of a big mac!)

>

> Jeff`

> I always welcome your 2cents.

> Yes I know anything could happen anywhere else on my body but for

> the fact that I had to have surgery to have a cut down done to put

> in a PICC line and nothing happened with that scar or when they

had

> to do a few things to get my Hickman in, again nothing happened.

> None of my spots from PICC lines have done anything but leave the

> normal scars…It is just from my knee down on my right leg. Again I

> know anything can happen but what is life without risk sometimes?

I

> know this seems like a really stupid risk but I have done A LOT of

> thinking. This is not just something I came up with over night.

Plus

> I never said I was defiantly going to do it. I was just seeing if

> anyone else had done it and see what they had to say about it.

>

> As I said in a message to , I do know of someone who WOULD

do

> it. I am still thinking and IF I did anything I would most likely

> wait until this summer because I would have time to heal during

the

> summer before returning to school. I have mentioned having an AKA

> done numerous times but my parents tune me out. I have some very

> close people that I have talked to about having an AKA and we are

> weighing out everything. I have a great friend that has been

given

> the name Superwoman because she too had her own set of medical

> problems and the doctors could not figure her out. We spent many

> nights crying together, laughing at the doctors stupidity and

> talking about how it felt to go from doctor to doctor and endure

> procedures just to find out they are even more confused. We

decided

> when we both were diagnosed we were going to take a trip to

> celebrate, a little treat for ourselves. Well she got diagnosed

and

> the trip was what kept me going. Our plans were being finalized

when

> my diagnoses of PG went the way with the wind. So goodbye to that

> trip but a new one will come with time… As I said before this is

> something that I have spent A LOT of time thinking about and just

> wanted to see if anyone else had done it to hear what their

> experience was.

> I know that in life without pain you will gain nothing. The fact

> that I am getting a new spot, my pain seems to be getting worse

(as

> it always does in the colder weather) and the fact that I was

> invited to go out for my friend's birthday and couldn't because of

> my leg just made me decide to see what others here had to say

about

> it. Trust me Jeff I know you know what it is like and your not

> talking the talk without walking the walk.

>

> As for grand rounds, they became even more confused then they

> originally were. Things they thought I didn't have now are coming

> back, things they said I had, they now say no… In other words they

> are still super confused. I am supposed to go back on the 6th of

> December to hear what they have to say or see what they want to

> try. If they are still clueless and have no suggestions except to

> give them more time, I am not going to be a happy camper at all.

If

> I do find out something I will be extreamly happy, it would be an

> AWESOME birthday present (since the next day I turn 19 :/ ).

> I am still chugging through some days better then others but I

have

> not given up yet. Just taking it one step and one hobble at a time.

>

> ~Colleen

> *a few fries short of a happy meal, messed up leg and an even more

> messed up immune system*

>

[Guest guest]

Jeff,

I always welcome your opinion. I know many think it is a really bad

decision and I am still looking into things. I just wanted to hear

if anyone had done it on this board and if they did to see what they

had to say or if people had considered it, why they didn't do it. I

want to find out as much as possible and just flat out reading

medical text doesn't cut it. I want to make a well informed choice.

As I have said this is not some spur of the moment idea. March 29th

will be 3 years and as I said NOTHING would be done until I atleast

get to that point.

As for speaking your mind it is a great thing. The people that

matter to you won't care and those that do care don't really matter.

I have been known to get myself in trouble for speaking my mind but

I say what I mean. No use pretending sometimes.

I am still waiting for my answer. They do not want to start me on

anything until they know what is wrong with me because if they do

something and it starts working then my symptoms may be gone and

then they would not look as hard at finding a cause. Atleast that's

what they told me.

Grand rounds was not that great. I was going to be seen along with

another lady. We were both there on time (actually early) sitting

where we were told to go and our residents didn't show up until 15

minutes after they wanted to meet us. We were both put into exam

rooms, a nurse came by to make sure that they could see my leg so

that I didn't have to put on an exam gown then left. My door was

left open and people came in and out as they please. It wasn't group

by group or anything like that. It was just come and go as you

please for 30 minutes. My resident then came in and told me I could

go, meanwhile my leg has fluid dripping down it and everything (he

knew it because he was playing with it) so I was like can I please

have a bandaid? You would have thought I was asking for something

major based on his reaction. My dad asked if he could stay and sit

in during grand rounds seeing how he was a doctor and was a med

student at Mt. Sinai but the resident couldn't let him because he

couldn't find the guy that was in charge so he said as soon as they

got out he would call my dad and let him know what was said (yeah

call my dad not call me the patient…its only my body afterall).

Three hours later my dad gets a call and was told that they were

even more confused then originally. They were going to once again go

over my path slides, order more of them to be sent over and to make

an appt in a few weeks. I was to continue using the ointment they

gave me and hope for the best. One would think if they figured

something out they would let me know as soon as they did so that we

can get some sort of treatment underway so I am assuming ( I know im

making an ass out of you and me) that they are still clueless.

Now on to your closing Jeff. You can't be a few fries short of a big

mac. Big Macs don't come with fries unless you make it a meal. You

can have the big mac without the fries and that is ok. A happy meal

is not a happy meal without the fries (even though now adays you can

get apples but when I was a kid (haha) they came with fries. That

means only a few fries short of a happy meal works.

~Colleen

*a few fries short of a happy meal, a bad leg and even worse immune

system*

[Guest guest]

colleen,

you are too funny sometimes. i love your sense of humor. maybe i

am a few pickles short of a big mac (do they put pickles on a big

mac???)..hee, hee.

we just don't know enough about our immune systems to say in any way

what causes your pg or pg " like " looking ulceration. sometimes the

only way to know, believe this or not, is treat and see the

reaction, this helps confirm thereby then also helps dx the

ailment. the only really important thing to watch out for is to be

sure this is not something else, like infection for example. with

the work up they did, they know it is not that or they would have

you on anitbiotics. is the fk-47 ointment doing anything for it?

as rebecca has elluded to several times, there are prolly 80

autoimmune diseases, all are difficult to dx at best. i dunno, i

think they need to treat you based on what they know, get you

comfortable, then go from there. if it improves, that says

something. sometimes i think our medical profession acts

to " pure " . it's almost, like, the hell with the patient.

yeah, " may i have a band aid please " , like, you are asking for the

world or something. i know, i have had some of the worst treatment

by some docs and nurses.......makes you wonder why the f *$* & % they

are in the profession.

there are docs in various specialities that specialize in

particularily difficult cases. my doc at u of m confired with a doc

at northwestern university, chicago. this doc, don't remember his

name, is supposedly the leading and most knownledgeable authority on

pg. well, he did me right because i had a case that was by far the

most exteme my doc had ever seen in his career. in this business of

being a patient with a difficult case, the doc you go to makes all

the difference in the world. you have to have one that, if he does

not know the answer, he is willing to go out and look to find

it...use his resources. i was lucky to find one that fit that

category, if you will. i don't think you have gotten to that point

yet. i am still amazed that they aren't doing more for you, you are

at one of the best clinics around.

what they did at grand rounds was normal. you really don't learn

anything from that, but the results of that should be giving you a

definate direction. you could be waiting forever, you/they may

never figure out what in particular is at the root of all of this.

i think our bodies are too complicated. look at me. they don't

know what causes pg or my cd and it was trial and error medicating

to find something that gave me my life back. even if they do find

out what the underlying cause is, the way treatment for autoimmune

is, it is trial and error medicating......period.....in many cases

the treatments are worse than the disease itself! maybe you see why

i am befuddled by this now.

hang in there kid, i am hanging with you and so is everyone in this

group,

love,

jeff

>

> Jeff,

> I always welcome your opinion. I know many think it is a really

bad

> decision and I am still looking into things. I just wanted to hear

> if anyone had done it on this board and if they did to see what

they

> had to say or if people had considered it, why they didn't do it.

I

> want to find out as much as possible and just flat out reading

> medical text doesn't cut it. I want to make a well informed

choice.

> As I have said this is not some spur of the moment idea. March

29th

> will be 3 years and as I said NOTHING would be done until I

atleast

> get to that point.

> As for speaking your mind it is a great thing. The people that

> matter to you won't care and those that do care don't really

matter.

> I have been known to get myself in trouble for speaking my mind

but

> I say what I mean. No use pretending sometimes.

>

> I am still waiting for my answer. They do not want to start me on

> anything until they know what is wrong with me because if they do

> something and it starts working then my symptoms may be gone and

> then they would not look as hard at finding a cause. Atleast

that's

> what they told me.

>

> Grand rounds was not that great. I was going to be seen along with

> another lady. We were both there on time (actually early) sitting

> where we were told to go and our residents didn't show up until 15

> minutes after they wanted to meet us. We were both put into exam

> rooms, a nurse came by to make sure that they could see my leg so

> that I didn't have to put on an exam gown then left. My door was

> left open and people came in and out as they please. It wasn't

group

> by group or anything like that. It was just come and go as you

> please for 30 minutes. My resident then came in and told me I

could

> go, meanwhile my leg has fluid dripping down it and everything (he

> knew it because he was playing with it) so I was like can I please

> have a bandaid? You would have thought I was asking for something

> major based on his reaction. My dad asked if he could stay and sit

> in during grand rounds seeing how he was a doctor and was a med

> student at Mt. Sinai but the resident couldn't let him because he

> couldn't find the guy that was in charge so he said as soon as

they

> got out he would call my dad and let him know what was said (yeah

> call my dad not call me the patient…its only my body afterall).

> Three hours later my dad gets a call and was told that they were

> even more confused then originally. They were going to once again

go

> over my path slides, order more of them to be sent over and to

make

> an appt in a few weeks. I was to continue using the ointment they

> gave me and hope for the best. One would think if they figured

> something out they would let me know as soon as they did so that

we

> can get some sort of treatment underway so I am assuming ( I know

im

> making an ass out of you and me) that they are still clueless.

>

> Now on to your closing Jeff. You can't be a few fries short of a

big

> mac. Big Macs don't come with fries unless you make it a meal. You

> can have the big mac without the fries and that is ok. A happy

meal

> is not a happy meal without the fries (even though now adays you

can

> get apples but when I was a kid (haha) they came with fries. That

> means only a few fries short of a happy meal works.

>

> ~Colleen

> *a few fries short of a happy meal, a bad leg and even worse

immune

> system*

>

[Guest guest]

colleen,

good quote....soooooooooo true.

well then, how can you be a few fries short of a happy meal if all

you eat is their broccoli cheese soup??? :-) (now this should be

interesting).

a couple of comments, then i will let you go.

i was really thinking more in line with infections on the wound when

i said that, that is what i was referring to. maybe you are also,

wasn't sure. you can have a secondary infection on the wound but it

is not the underlying cause nor is it anything serious, " normally " .

" I personally think we should treat and see. It was the doctor who

made the comment. " YES! hurray for him!!!

" My mom and I really think that I have some form of lupus. The lupus

would not fully explain my leg problem,... " uh, not so fast here

now. i do believe pg can be a secondary side effect of lupus. i

think this is worthy of investigation. i have had this in the back

of my mind, but since i have never experienced it, i couldn't really

speak from any knowledgeable background.

" She smelt the stuff coming out of my leg. " what does it smell

like? is it really gross and nothing you can relate it to? that is

what my situation was. it had this pungent odor that i could never

describe in 100 years.

well, you enjoy the rest of your weekend, take care of that leg and

we's be talk'in with ya.

love,

jeff

>

> Jeff,

> Considering the only thing I eat at Mcs is their broccoli

> cheese soup I can¡¦t tell you what¡¦s in a Big Mac. If you would

like

> to be a few pickles short of a big mac go for it. If pickles are

not

> on them people can add them (even though its not burger king so

you

> really aren¡¦t supposed to have it your way) and maybe a big mac

is

> not complete to them until the pickles are there. My sense of

humor

> is what keeps me going sometimes. They say laugher is the best

> medicine. Besides its great to burn calories.

>

> I personally think we should treat and see. It was the doctor who

> made the comment. We know infections are not causing my leg

problems

> because I can have some major pockets without having ANY

infection.

> Once in a blue moon I do come up with an infection and its just a

> minor thing of staph or strep that is not resistant to anything.

> Plus when I was on IV antibiotics for 15 straight weeks (the

doctors

> were questioning me having and Osteo) my leg still had the pockets

> and did what it does now. The ointment has not really done

anything

> besides make my skin peel. My knee is starting to look like its

> reopening (with NO POCKET!!!! Just a hole ƒ¼).

>

> My mom and I really think that I have some form of lupus. The

lupus

> would not fully explain my leg problem, HOWEVER it would explain a

> lot of other things that are happening to me. My paternal

> grandmother died when she was around 43 of complications due to

her

> Lupus. I have had doctors straight up say that they really think I

> have lupus but wont diagnose me with it until I have a positive

> blood test for it even though some cases will never have that test

> be positive.

>

> The doctor that I am talking about seems to love his profession. I

> think he was just a little out of it because I was his case to

> present and I am no easy case. The fact that I showed up to my

first

> appointment with a binder that had 158 pages of test results

(that¡¦s

> just the strange test results), 5 CDs that had copies of MRIs,

CTs,

> Xrays, ultrasound and a WBC nuclear study tends to make the

> residents and med students go a bit nuts. However I am going to

see

> what he does next time I ask because if he responds like he did

> again I really think that I will have to ask for a new resident.

Am

> I being a bit picky, maybe, but after dealing with doctors who I

> really think are only there for the money I get to be a bit grumpy.

>

> My immunologist was a great guy(although he did tell me that I

HAD

> AIDS or HIV¡Kmy tcell count was on the bored of HIV/AIDS¡Kno ifs

and

> or buts about it¡Kthen he apologized when I didn¡¦t). He tried his

> hardest to figure out was wrong with me. When he knew my case was

> beyond his abilities he started making copy of my records and sent

> them to big name hospitals and to his friends at some smaller

places

> to see if anyone could help me. That is how I ended up in Boston

> with the three doctors who decided that I had PG¡K He called after

I

> came back from Boston to see how things went. He spent hours on

the

> phone with those doctors and he is still trying to figure out what

> is going on with me now that I no longer have a PG diagnoses. I

may

> no longer go there every two weeks to have countless test ordered

> but he still tries to find something for me.

> I also had an ID doctor who was one of the best in her field treat

> me. The only problem was she only worked in the hospital and did

not

> see out patients. However when I was in the hospital she was

great.

> She sat in my room and watched my leg exploded one time. It was

> great because she was there and as she was on the phone (with my

> dad) she saw my leg get worse and worse and then just burst. She

> smelt the stuff coming out of my leg. She hand picked the doctors

> that would work on my case. When I returned again she started

> looking into different treatments and she made suggestions and

even

> referred me to Children¡¦s Hospital of Philly (Don¡¦t even get me

> started on that place¡Ktalk about a soapbox).

>

> As for grand rounds the whole residents showing up late is not

> really normal. The other stuff was in a way normal but I guess you

> just had to be there for it. My dad even said it was a bit off. I

> wish they could give me an idea on what is happening and any

> treatment they want to try sooner rather then later. If they do

try

> something new I will basically be starting it on my birthday¡Kno

fun.

> Most of the time when I take any sort of medication I lose my

> appetite, get nausea or have a funny taste in my mouth, even with

> the drugs that aren¡¦t supposed to do that to you. To top that all

> off I have something like a week before my first final. Nothing

like

> trying to get used to a new medication while studying for finals

and

> getting any end of the semester projects done especially if its

one

> of those lovely drugs which is worse then the whole leg thing.

>

> Well enough of me rambling but before I sign or sing(as

puts

> it) off I wanted to share this quote that someone from campus sent

> me today¡K

> ¡§Anyone can give up, it's the easiest thing in the world to do.

But

> to hold it together when everyone else would understand if you

fell

> apart, that's true strength¡¨

> ~Colleen

> * a few fries short of a happy meal, a bad leg and even worse

immune

> system*

>

[Guest guest]

Jeff~

When I was younger I would get the happy meal just for the toy and

someone would eat everything in it. I personally prefer to go to

taco bell and get a kiddie meal with two soft shell tacos¡Kminus the

meat (talk about interesting you should see and hear the reactions I

get) but it doesn¡¦t sound right to say a few nachos short of a

kiddie meal.

I was referring to the wound when I was talking about the

infections.

The first thing doctors looked into was me having an infection as an

underlying problem.

" I personally think we should treat and see. It was the doctor who

made the comment. " YES! hurray for him!!! I guess I made that a bit

confusing. I think we should do the treat and see. It was the doctor

who made the comment about not treating until we know what is going

on. So booooo for him, Hurray for me.

I figure if the doctors come up with something then we can go back

and try the lupus thing again and be like we told you I really had

something wrong with me, I am not doing this to myself and at first

you didn¡¦t believe us¡Know lets try with lupus. Some battles you

have to put off for a little bit and then try again later.

My leg normally doesn¡¦t have too bad of an odor. Sometimes it will

have this really strange smell but I can¡¦t put my finger on it . The

only pungent odor I ever had was when they left my packing in for a

bit too long and when they pulled it out it didn¡¦t smell that nice.

I am going out to lunch with my gym teacher (well more like my

therapist since I never really did gym where I live now¡K) who has

been my saving grace, later today. Then the rest of the weekend is

more bonding time with the couch and whirlpool ļ.

I hope you have a great rest of the weekend.

~Colleen

*A few fries short of a happy meal, bad leg and even worse immune

system*

I cant wait to actually have a real thing to sign off with..ha

[Guest guest]

Jeff

The candy cigarettes used to be my favorite. Especially the ones that

when you blew on had powder come off to make `smoke " . I still have the

wax bottle candy things a few times throughout the year, but I don't

like them as much anymore…they are too sweet. I can't go with you on

the 10cent cokes or the 25 cent bread but I do remember when gas was

around a dollar.

You should know by now my doctors aren't the sharpest tools in the

shed (or OR in my case). Maybe everything will change on the 6th. A

girl can dream can't she…

~Colleen

A few fries short of a happy meal, bad leg and worse immune system