Re: Bummed

[Guest guest]

Heidi,

I am so sorry about your finger. What a bummer! I am thinking of you and I

can relate to your feelings of being defective...I also have multiple health

issues going on and have to wonder myself....why?

I am so sorry that the Estrace has stopped working . Hmmm....what a mystery

VV is, huh?

Well, my good thoughts are with you and remember, you are not having any

feelings that are not perfectly natural in your situation...it would be odd

if you didn't have these difficult feelings.

Smiles and peaceful wishes,

A

[Guest guest]

Hiedi,

Sorry about your finger. That really stinks. Do you think your vv may be

acting up more lately because you are having sex more because you are trying

to get pregnant? I do not know if you already do this but, you may want to

monitor your cycles and take your basal body temperature. This will tell you

when you are ovulating. If you only have sex on those few days maybe you won't

be so sore. You can find the kit at most drug stores. Also, talk to your

ob/gyn, they can explain to you how to do this. I am not sure if you know this

but you should take folic acid. This is shown to greatly reduce any kind of

spinal disorders in the baby ( just my 2 cents). This should be taken before

you get pregnant.

Beckie

[Guest guest]

Hiedi,

Sorry about your finger. That really stinks. Do you think your vv may be

acting up more lately because you are having sex more because you are trying

to get pregnant? I do not know if you already do this but, you may want to

monitor your cycles and take your basal body temperature. This will tell you

when you are ovulating. If you only have sex on those few days maybe you won't

be so sore. You can find the kit at most drug stores. Also, talk to your

ob/gyn, they can explain to you how to do this. I am not sure if you know this

but you should take folic acid. This is shown to greatly reduce any kind of

spinal disorders in the baby ( just my 2 cents). This should be taken before

you get pregnant.

Beckie

[Guest guest]

Hi Heidi and friends...

I know EXACTLY where you are coming from!! When I was 32, after the birth of

my daughter....I developed Grave's Disease...(which at first...my

Endocrinologist thought that I might have Pheochromocytoma...a growth on the

Adrenal glands! Scared me to death!!) then hypertension...and then was

diagnosed with also the " baseline " for Glaucoma...to top it off...I went into

a deep- post-partum depression. Friends and family (other than my husband)

couldn't understand the depression part...as I had had two boys and then had

my daughter. People are VERY ignorant to emotional issues. I kept hearing

over and over... " why are you depressed? You just had a girl! " My mother-in-

law was the worst with this...as she had four sons and never a had a daughter.

I didn't matter what ANYONE said...I felt like I was falling apart.

To complicate things...I was put on Vasotec for high-blood pressure. It was

making my ENTIRE body turned flushed red. I went from Dr to Dr as they NEVER

had seen such a reaction. Finally the Vasculor Surgeon in my Cardiologist's

office figured it out. Then...My blood pressure was up to 188/110..and was

put on Toprol XL100. For you newbies...My Allergist believes that the Toprol

is suppressing my immune system..thus, giving making my body's immune system

not able to ward off yeast..thus, causing VV. I will see my Cardiologist on

Dec. 17 to suggest a possible change in meds..here's hoping he doesn't look at

me like I have three heads.

I've also in my life...had horrendous knee problems. A girl tripped me in a

basketball game intentionally, (jockette rivalry at it's best, at age of 13)

I have had to have surgery 5 times on my left knee...and need a new one. I am

much too young for an artificial knee..so my Othro. just did what he could to

hopefully tie it over until I'm at least around 50 or so. I have very bad

osteoarthritis in it...but, I take occasional Ibuprofen for it. Have spent

about 6 years total of my life being on crutches at one time or another...and

years of physical therapy. I went from a VERY athlectic young girl, (had a

scholarship to pitch softball at the Univ. of RI) to a somewhat disabled

person. I have ALWAYS felt cheated by this whole mess...I have not been able

to do ANY sports of any kind anymore, except for bike riding and swimming.

This has been devasting for me...as I have been always...very active and

recreational sport's minded.

I've also had 3 ankles surgeries from a multiple fracture...I had only been

married 3 months when this happened.

The past three years...I've been sick all of the time. So sick...that I even

got tested for HIV...(I had been going for Electrolysis, need type, and

started to worry that maybe the technician forgot to change the needle

once!!!) Flus, colds, sore throats, stomach/diaherrea bugs, Thrush, Yeast,

UTI's, blood in my stool, (which I ended up having to have a Colonscopy for

last Feb...what fun! My Dad had pre-cancerous polyps and my grandfather has

Colon Cancer so they wanted to make sure it wasn't being caused by Cancer...VV

was going on too, all through this)...you name it...I've had it. Right now I

have Bronchitis..and won' t take the antibiotics for it. After talking with

my GYN..I decided against it. He said the cause of URI's are usually viral

and that antibiotics won't help. I started taking a vitamin with Vit. A, C,

Zinc and Echinacea..and since have been getting better. Don't know if it's

coincidental or not....but, whatever it is...I'll take it.

Lump on top of all of this...The VV!! My friends and family...don't

understand what this condition is like. I think sometimes they think it's all

in my head and that it can't be as possibly bad as I make it out to be. Now,

I know you girls know what it's like to have VV...and I'm SURE you can relate

to this scenario. Especially after I went from Dr. to Dr...Eight Dr's in all,

and was claiming to still have the problem. No Dr's could cure me or had the

answer, other than the VV diagnosis. Even when I was asked about my recent

trip to NYC to see the Specialist..and was asked many times how it went...I

can tell most people were taken back by the fact that I thought I knew much

more about VV than he did, (sure you gals know what I'm talking about here!)

Some of my closest friends, were doubting me. It hurt me SO much. There were

many times when I was tempted to drop my drawers so they could see for

themselves. My heart really goes out to the girls who have no visible

symptoms! That must be awful!!! My symptoms have always been visible to the

Dr's I've seen.

I was also sexually abused/raped by a friend of the family twice at the ages

of 13 and then again 14. My Mom is Manic-Depressive and

Sczihophrenic..SP?.(she had 13 nervous breakdowns and wasn't even aware of

what was going on). I was in a extremely mentally abusive relationship for

three years...from age 17-21. Did the drugs/alcohol thing..looking for

someone to notice me and acceptance. I had such low self-esteem..that I took

the abuse. My Dad was working 16 hours a day...and never was home. I kept it

bottled up inside me for eleven years..(about the rapes) before finally

telling my husband. God, I wished I could have told somebody years ago...as

the person who did this to me was 21...they would have strung him up by the

you-know-whats!

When I was 29...and my sister was 32...My sister developed Brain Cancer. She

actually had two different types of Cancer in the Brain..this was only the

THIRD time in history such an occurence has ever-been documented in the US.

She had two surgeries in two years...(I ended-up miscarrying a baby through

all of this. at 11 weeks gestation and had to have a D & C)..I believe that is

was due to the stress from the whole thing) and she underwent massives doses

of Radiation and Chemo. So massive, that she had to sign a disclaimer not

holding the hospital (s) responsible if she died from the treatment. She is

now sterile and can not have any kids. She hadn't had children yet before

this happened..so, now she never will be able too. I cry for her about this

from time to time. She was stage 4 Cancer..and still is here 6 years later!

We are lucky that she is still alive.

I've actually left out some other things tragic things...but, knew I was

already getting way TOO winded!!! Thanks to those who have stuck with me

through this NOVEL I've just typed...and read it! I've actually found this

therapuetic..just typing all of this!

Well...at age 36 Heidi...and friends...I can FULLY sympathize with those who

feel like they are falling apart! For me...every day can bring a new

symptom...I have found the GREATEST comfort from all of you...and had to have

been my own advocate in my quest to rid myself of what is just another

physical thing I've had to deal with. All of my friends/family are healthy

and they are CLUELESS as to how lucky they are. It's so frustrating at times.

I WILL NOT give up until I am given back the quality of life I know I can

have. If it means having to keep trying new things...so be it. Sooner or

later..something's gotta work! Right now for me, the answer is

Diflucan...but, I must keep looking for the underlying cause (s). Think low-

carb..no yeast diet is in my near future, like Donna P!!! (I will attempt this

after the Holidays..and am going to a Nutrionist for this)

Thanks for listening friends... Remember...we are all in this together. We

share a common link..and together..we will find the solution to our

problems..sooner or later!!!

I think God for all of you...and this list!

Hugs and yours in healing....

Carla

[Guest guest]

Dear Carla,

I don't think I could hold up as well as you do with all that going on!

Especially for so many years. All of us go through so much but some of us have

more on our plate than others. You are a rare soul to have so much fight left

and so little bitterness.

About the bronchitis. My son has asthma and all the things that go with

it. The miracle of modern medicine has failed him (surprise!) so I give him

wild cherry bark for his lungs. It will work for your bronchitis if you would

like to give it a try? Let me know.

On other notes. I also notice my urine is stronger at times and have

seen that 'sheen' in the bowl. It does seem these things coincide with flair

ups of IC and vulvodynia to me as well. And...I notice the discharge for a

few days after intercourse. I have no irritation to my lovers sperm or the

Conceptrol I use for BC. I just get a discharge. I think it's from irritation

from the act itself on my sensitive tissues.

Blessings and Be Well,

Shirley.

[Guest guest]

Heidi,

You're certainly entitled, as we all are, to have those days/times when it

all is just too much. I have plenty myself. It's strange how when

something starts bothering you or flares up, everything else follows suit.

I notice that my pain threshhold seems lower, so everything hurts more,

disables me more, and it's definitely affected by (or it affects) low

seratonin, because then the depression hits, and it all becomes one lousy

cycle.

I'm 48 and have many, many times wondered how I will ever be able to handle

70 and 80 years old. My parents are both 71, pretty healthy, drive to

Florida from New England every year and stay for 7 months, golf, play

tennis, play bridge, go out to dinner, movies, concerts, throw dinner

parties, socialize all the time. When I go to visit them, it's like going

to see my parents at camp. I just tell them, " Don't make any plans for me

-- I can't keep up. You just go do your things and I'll be fine here. " I

feel like their mother. (When I'm even healthy enough to make the trip to

visit!)

I used to sit and talk with my 89-year-old grandmother before she passed

away and we'd compare our aches, pains, ailments, etc. We were almost

exactly alike -- except she could stay up watching TV until 1:00 in the

morning and I had to be in bed by 9:00. Gosh, I couldn't even keep up with

my Grandmother!

One thing I've always felt is that for us to get well, there must be ONE

thing that has to be done to affect our entire system and get everything

moving right. Not this band-aid stuff where every organ, system, etc. is

being treated differently. It's just not going to work that way, I don't

believe.

That's why I had decided to try guaifenesin and see if it was the answer to

clearing out and rejuvenating my entire body. From what I've read, many

people are doing a lot better and have had major changes with energy, FMS

pain, chemical sensitivity, vulvodynia, etc. I haven't tried it yet, but

plan to soon and will keep you posted.

Sorry you're in this ugly place, but luckily we know that it is changeable

and will let up soon.

Hugs,

Janis

----------

[Guest guest]

Heidi,

You're certainly entitled, as we all are, to have those days/times when it

all is just too much. I have plenty myself. It's strange how when

something starts bothering you or flares up, everything else follows suit.

I notice that my pain threshhold seems lower, so everything hurts more,

disables me more, and it's definitely affected by (or it affects) low

seratonin, because then the depression hits, and it all becomes one lousy

cycle.

I'm 48 and have many, many times wondered how I will ever be able to handle

70 and 80 years old. My parents are both 71, pretty healthy, drive to

Florida from New England every year and stay for 7 months, golf, play

tennis, play bridge, go out to dinner, movies, concerts, throw dinner

parties, socialize all the time. When I go to visit them, it's like going

to see my parents at camp. I just tell them, " Don't make any plans for me

-- I can't keep up. You just go do your things and I'll be fine here. " I

feel like their mother. (When I'm even healthy enough to make the trip to

visit!)

I used to sit and talk with my 89-year-old grandmother before she passed

away and we'd compare our aches, pains, ailments, etc. We were almost

exactly alike -- except she could stay up watching TV until 1:00 in the

morning and I had to be in bed by 9:00. Gosh, I couldn't even keep up with

my Grandmother!

One thing I've always felt is that for us to get well, there must be ONE

thing that has to be done to affect our entire system and get everything

moving right. Not this band-aid stuff where every organ, system, etc. is

being treated differently. It's just not going to work that way, I don't

believe.

That's why I had decided to try guaifenesin and see if it was the answer to

clearing out and rejuvenating my entire body. From what I've read, many

people are doing a lot better and have had major changes with energy, FMS

pain, chemical sensitivity, vulvodynia, etc. I haven't tried it yet, but

plan to soon and will keep you posted.

Sorry you're in this ugly place, but luckily we know that it is changeable

and will let up soon.

Hugs,

Janis

----------

[Guest guest]

Heidi,

You're certainly entitled, as we all are, to have those days/times when it

all is just too much. I have plenty myself. It's strange how when

something starts bothering you or flares up, everything else follows suit.

I notice that my pain threshhold seems lower, so everything hurts more,

disables me more, and it's definitely affected by (or it affects) low

seratonin, because then the depression hits, and it all becomes one lousy

cycle.

I'm 48 and have many, many times wondered how I will ever be able to handle

70 and 80 years old. My parents are both 71, pretty healthy, drive to

Florida from New England every year and stay for 7 months, golf, play

tennis, play bridge, go out to dinner, movies, concerts, throw dinner

parties, socialize all the time. When I go to visit them, it's like going

to see my parents at camp. I just tell them, " Don't make any plans for me

-- I can't keep up. You just go do your things and I'll be fine here. " I

feel like their mother. (When I'm even healthy enough to make the trip to

visit!)

I used to sit and talk with my 89-year-old grandmother before she passed

away and we'd compare our aches, pains, ailments, etc. We were almost

exactly alike -- except she could stay up watching TV until 1:00 in the

morning and I had to be in bed by 9:00. Gosh, I couldn't even keep up with

my Grandmother!

One thing I've always felt is that for us to get well, there must be ONE

thing that has to be done to affect our entire system and get everything

moving right. Not this band-aid stuff where every organ, system, etc. is

being treated differently. It's just not going to work that way, I don't

believe.

That's why I had decided to try guaifenesin and see if it was the answer to

clearing out and rejuvenating my entire body. From what I've read, many

people are doing a lot better and have had major changes with energy, FMS

pain, chemical sensitivity, vulvodynia, etc. I haven't tried it yet, but

plan to soon and will keep you posted.

Sorry you're in this ugly place, but luckily we know that it is changeable

and will let up soon.

Hugs,

Janis

----------

[Guest guest]

Wow, Carla! You had me in tears! That is quite a story! My thoughts and

positive vibes are with you. I am so sorry you have gone through so much.

You are an amazing and strong woman to endure all that.

Thinking of you.... A:)

[Guest guest]

Actually - that might be a part of it. I took a pregnancy test today -

not pregnant. I guess I might try that basal temperature stuff.

Thanks for the suggestion. And thanks to everyone else who has written

to try and cheer me up. I really appreciate you all!

Warmly,

Heidi

> Do you think your vv may be acting up more lately because you are

> having sex more because you are trying to get pregnant?

[Guest guest]

HEIDI: I can MORE than empathize!!! I can't COunt all the things that are

wrong with me. When i first went to my Internist about 4 years ago..after

being battle scarred by dozens of Urologists, she said I had an overhwleming

amount of " challenges " !!! More, by far, than trying to simply get out and

" enjoy life " , being almost housebound for l4 years with first one and then

another ,ad infinatum..the past week a really biggie has begun..on top of the

VV, IV, FMS etc., etc., etc.

SORRY to hear about your finger and that you are " down " ..I hardly ever get

UP!!!

I have been unable to get ON here for 4 days or so and there were over 240

emails today..have been on since mid day and am NOT answering many

anymore..but still am not half thru them...Hang in there! Lorane