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Kathy,

With what you've stated with a bite

and rash your doctors attitude of " wait

and see " is NOT correct!

If you truly have Lyme then you'll just be

allowing this bug to dig in deeper. I know that

sounds harsh but it's true.

Here are some of the most honest Lyme sites

on the web and I would suggest that you take

a look and educate yourself about Lyme.

Next, then you'll need to find out if anyone

knows of what we call a LLMD (Lyme Literate, MD)

in your area.

I know this is scary, and we've all been where

you are. You need to get medical attention very

soon and continue to post your concerns to us

and we'll do the best we can to be there for you.

My best,

Marleen

<A HREF= " http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html " >http:

//www.geocities.com/HotSprings/Oasis/6455/lyme-links.html</A>

<A HREF= " http://www.jersey.net/~joebur/emblaze.htm " >http://www.jersey.net/~joe

bur/emblaze.htm</A>

<A HREF= " http://www.lyme.org " >http://www.lyme.org</A> ~ <A

HREF= " http://www.lymenet.org " >http://www.lymenet.org</A>

<A HREF= " http://www.lymealliance.org " >http://www.lymealliance.org</A> ~ <A

HREF= " http://www.Lymetruth.org/ " >http://www.Lymetruth.org/</A>

K717@... writes:

> am new to the list and new to Lyme Disease just diagnoised one month ago. I

> have already taken 30 days of Doxycycline and started to feel much better

> the last two weeks before completing the med. I have been off the med

since

> Thurs of last week and my pain has returned and getting worse each day. I

don't

> think my doctor is familar with the disease and I would like help from

this

> list to know what to expect next. My doctor said to " wait and see " I'm

not

> sure what I am waiting on. I live in South Carolina and I still work full

> time but some days I don't think I can make it. I don't know when I

> contacted

> the disease but I did have a bite that I thought was a flea bite and a

rash

> that developed back in late spring early summer.

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Kathy,

I don't know what your doctor is waiting on either. But seems to me you need

to find a doctor that is more knowledgeable in Lyme disease. Or print out as

much information that you can and bring it to your doctor. At least that way

you can tell if your doctor is interested in learning. I'm attaching a few

sites with good articles. Hopefully it helps. Hang in there and good luck.

Vicki

[Lyme-aid] Newbie

>From: K717@...

>

>Hello everyone,

>I am new to the list and new to Lyme Disease just diagnoised one month ago.

I

>have already taken 30 days of Doxycycline and started to feel much better

the

>last two weeks before completing the med. I have been off the med since

Thurs

>of last week and my pain has returned and getting worse each day. I don't

>think my doctor is familar with the disease and I would like help from this

>list to know what to expect next. My doctor said to " wait and see " I'm not

>sure what I am waiting on. I live in South Carolina and I still work full

>time but some days I don't think I can make it. I don't know when I

contacted

>the disease but I did have a bite that I thought was a flea bite and a rash

>that developed back in late spring early summer. I have been trying to

find

>out everything that I can about this disease. I never realized that it was

a

>serious as it is. If anyone would like to email me directly I would love to

>have one on one chats about Lyme since I still work I don't have time to

read

>all the emails on the list and may miss something that is really important.

>Thanks for any info that you can give me. Your friend Kathy

>(kscott717@...)

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

>To unsubscribe, send email to -unsubscribeonelist

>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

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I printed out all sorts of material for my doctor when I went to her and

asked her to treat me for Lyme. I watched her put the entire packet in my

file and I'm sure that's where it's been ever since. It's still a good idea

to take material along with you, but be prepared to be blown off.

(Michigan)

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The things Kathy wrote about are exactly why it's

so very important to go to a Lyme literate doctor

who is treating Lyme patients on a daily basis. Most

physicians will not prescribe antibiotics in large enough

doses and for long enough periods of time. What can

happen due to this is that the bacteria becomes resistant

to that antibiotic and there are just a handful at this point

proven to kill the bacteria.

Also, they don't want to make waves and get into trouble

with the state medical boards and other powers that be.

So patients end up undertreated because of our good

buddy A Steere and his cronies at Yale and those like

him who have moved on to other institutions.

Even a physician with the best intentions and the purest

motives willing to deal with very real threats has to learn,

but let the physician learn by attending the Lyme meetings

and confrences, not on you! Everyone has to learn at

sometime, but if you need effective medical attention now

seek out a LLMD. Then maybe that LLMD can work

with a willing family doctor or whatever and through this

kind of connection help to teach a non literate physician

about Lyme Disease.

Wishing us all health and freedom from pain,

both physical and emotional -

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,

Is she treating you for Lyme? If not, are you looking for another doctor?

Hate doctors that aren't even willing to learn new information. My second

visit to my LLMD I had piles of stuff off the internet, he looked at it all

and told me to be careful what I believe, but chose several of my articles

that he said he believed were reliable sources, then told my husband not to

allow me on the internet anymore than one hour a day, yeah right! Its all

I'm capable of these days. Good luck

Vicki

Re: [ ] Newbie

>From: lisa86@...

>

>I printed out all sorts of material for my doctor when I went to her and

>asked her to treat me for Lyme. I watched her put the entire packet in my

>file and I'm sure that's where it's been ever since. It's still a good idea

>to take material along with you, but be prepared to be blown off.

>

> (Michigan)

>

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Sometimes it's best to send the material ahead of time so the doc can read

it before you get there. Of course you'd need a doc you would care enough

to read it in the first place. At least then you can say, " Did you read the

materials I sent you " . If the answer is " no " you can quickly ascertain that

this doc isn't very good.

Robynn

Re: [Lyme-aid] Newbie

> From: lisa86@...

>

> I printed out all sorts of material for my doctor when I went to her and

> asked her to treat me for Lyme. I watched her put the entire packet in my

> file and I'm sure that's where it's been ever since. It's still a good

idea

> to take material along with you, but be prepared to be blown off.

>

> (Michigan)

>

> > Send to -Offtopiconelist messages unrelated to lyme, please.

> /archive/lyme-aid

> /archives.cgi/Lyme-Documents

> To unsubscribe, send email to -unsubscribeonelist

> You may substitute " subscribe " , or " digest " or " normal " for

> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave

blank both the message and subject header.

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  • 2 months later...

Welcome, Al. I agree that it feels nice to " belong " to this mottly crue! I

have spent some many years in isolation with this disease and now my walk is

lighter because I know I am not walking this road alone anymore.

Thank you to and and the others who put so much time into

keeping this list going.

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  • 1 year later...

Hi,

My name is Tina, I'm dx CFS, have a 12 yr old daughter dx ADHD/CFS/Learning

Disability, and a 10 yr old daughter dx autism. I've posted a couple of

times before introducing myself...life has been very busy preparing for an

upcoming event. Our family has always been very active in advocacy and

promoting progress for healing our diseases. I am looking forward to

learning from and sharing with you all.

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

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Hi, Tina!

We are glad you are here. It's a great place to learn and share.

> Hi,

> My name is Tina, I'm dx CFS, have a 12 yr old daughter dx

ADHD/CFS/Learning

> Disability, and a 10 yr old daughter dx autism. I've posted a

couple of

> times before introducing myself...life has been very busy preparing

for an

> upcoming event. Our family has always been very active in advocacy

and

> promoting progress for healing our diseases. I am looking forward

to

> learning from and sharing with you all.

>

>

> Tina M. Hendrix

> Cure2000@a...

> Vice-President, California Coalition

> Neuro-Immune Dysfunction Syndromes

> Autism Spectrum Disorder, ADD/ADHD, Learning Disorders,

Hyperactivity, CFS,

> etc.

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Thanks, !

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

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  • 3 months later...
Guest guest

Hi Betty, my name is Terry. I live in southern Az northwest of Phoenix. Every year for several years I kept asking my Doctor why I was tired all of the time. They kept telling me it was because I was getting older "I am only 48". Then last year while having some blood work done, the Nurse got pricked with my needle. So they had to have me tested for HIV Hep A B C. I tested postive for Hep C. I started combo treatment this January. From what I have read Hep C is a slowly progeive. So the 6 months shouldn't hurt that much. Their are several in this group that can give you better answears then I can.

I will be keeping you & your husband in my prayers

Terry

mystic <mystic1@...> wrote:

Hello Everyone, I am Betty and my husband has just been given a diagnosis of hep c. He is in the first stage of denial and I am focusing my anger on the doctors,,,he goes to the VA. :-) He has been trying to find out what he is suffering with for 4 years now and they "say" they have done every test known and that everything has come out negative or within normal limits. For these past 4 years (it just one day started out of the blue) he has been experiencing severe fatigue,muscle pain and weakness,joint pain,sleep disturbances and even an unexplained itching with no rash or skin disorder associated. There are some other symptoms as well.Not once did they ever suggest a hep c test. On our most recent visit to the VA with yet another new doctor,,they do not seem to stick around too long at the VA,she tells him she is overwhelmed with his chart and possibly he should see a psychiatrist for all these unexplained ailments for it might be depression. We are so sick and tired of this dance they do when they have no answers!!! THEN she says,Some of these symptoms might be from the hep c ,I am sure they have discussed this with you!!!! Our mouths dropped open and she could see the shock on our faces. What HEP C ???? Apparently in November of 2001 they did a hep c test and it came back positive,but failed to contact him!We left the Va in shock , but somewhat relieved to have a possible answer for all that he is experiencing.We drove to the nearest bookstore where we looked at a few of the popular hep c books,,,,,then we were not sure we were relieved LOLOL ,,,just no pleasing us! They have done another test to make sure the first one was correct it came back positive and now they have done a pcr test which has come back positive. I understand that there are two types of pcr tests one is qualitive and one is quantitive ,,is it true that only one gives viral load amounts??? We are so new to this and struggling to make sense of it all. We are told that he has probably had this in his system for 30 years as he used to be an IV drug user,,however we are confused as he had a life insurance exam less than 2 years ago and nothing came up at that time. He did have a spinal tap just under 2 years ago,,,blah blah blah,,I realize that many people never find out when or where but this time frame seems strange to us because of the life insurance exam. We are pretty positive minded people and I have no doubt that we will get through this especially since I have seen so much support available like this group.One last thing,,,, we feel that because they did not tell him that he has lost 6 months of possible treatment and they claim 6 months does not make a bit of difference ,,is this true and if so how do they know that without any sort of biopsy or blood work?.He was also told that his symptoms must be from something else because the symptoms he explains would only come in the later stages. He has an appt at the end of June............Sorry for this short novel and all the rantings,,,thanks for being here ,Blessings to all,Betty

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Thanks Terry,,,,That is exactly what my husbands first doctor told him 4 years ago !! He was just 46 at the time.

Re: [ ] Newbie

Hi Betty, my name is Terry. I live in southern Az northwest of Phoenix. Every year for several years I kept asking my Doctor why I was tired all of the time. They kept telling me it was because I was getting older "I am only 48". Then last year while having some blood work done, the Nurse got pricked with my needle. So they had to have me tested for HIV Hep A B C. I tested postive for Hep C. I started combo treatment this January. From what I have read Hep C is a slowly progeive. So the 6 months shouldn't hurt that much. Their are several in this group that can give you better answears then I can. I will be keeping you & your husband in my prayers Terry mystic <mystic1@...> wrote:

Hello Everyone, I am Betty and my husband has just been given a diagnosis of hep c. He is in the first stage of denial and I am focusing my anger on the doctors,,,he goes to the VA. :-) He has been trying to find out what he is suffering with for 4 years now and they "say" they have done every test known and that everything has come out negative or within normal limits. For these past 4 years (it just one day started out of the blue) he has been experiencing severe fatigue,muscle pain and weakness,joint pain,sleep disturbances and even an unexplained itching with no rash or skin disorder associated. There are some other symptoms as well.Not once did they ever suggest a hep c test. On our most recent visit to the VA with yet another new doctor,,they do not seem to stick around too long at the VA,she tells him she is overwhelmed with his chart and possibly he should see a psychiatrist for all these unexplained ailments for it might be depression. We are so sick and tired of this dance they do when they have no answers!!! THEN she says,Some of these symptoms might be from the hep c ,I am sure they have discussed this with you!!!! Our mouths dropped open and she could see the shock on our faces. What HEP C ???? Apparently in November of 2001 they did a hep c test and it came back positive,but failed to contact him!We left the Va in shock , but somewhat relieved to have a possible answer for all that he is experiencing.We drove to the nearest bookstore where we looked at a few of the popular hep c books,,,,,then we were not sure we were relieved LOLOL ,,,just no pleasing us! They have done another test to make sure the first one was correct it came back positive and now they have done a pcr test which has come back positive. I understand that there are two types of pcr tests one is qualitive and one is quantitive ,,is it true that only one gives viral load amounts??? We are so new to this and struggling to make sense of it all. We are told that he has probably had this in his system for 30 years as he used to be an IV drug user,,however we are confused as he had a life insurance exam less than 2 years ago and nothing came up at that time. He did have a spinal tap just under 2 years ago,,,blah blah blah,,I realize that many people never find out when or where but this time frame seems strange to us because of the life insurance exam. We are pretty positive minded people and I have no doubt that we will get through this especially since I have seen so much support available like this group.One last thing,,,, we feel that because they did not tell him that he has lost 6 months of possible treatment and they claim 6 months does not make a bit of difference ,,is this true and if so how do they know that without any sort of biopsy or blood work?.He was also told that his symptoms must be from something else because the symptoms he explains would only come in the later stages. He has an appt at the end of June............Sorry for this short novel and all the rantings,,,thanks for being here ,Blessings to all,Betty

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Guest guest

If they haven't done a biopsy, they don't know what

stage he's in. If your interested I have a ton of

websites I can send you that will tell you more than

you ever wanted to know. Physically, I don't think 6

months will make that much difference. Mentally, when

I found out I had this I wanted to treat it RIGHT NOW.

Sharon

__________________________________________________

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Guest guest

Thanks Sharon ,It would be great to have a list of sites mystic1@...

Re: [ ] Newbie

If they haven't done a biopsy, they don't know whatstage he's in. If your interested I have a ton ofwebsites I can send you that will tell you more thanyou ever wanted to know. Physically, I don't think 6months will make that much difference. Mentally, whenI found out I had this I wanted to treat it RIGHT NOW. Sharon__________________________________________________

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Hi Betty

Welcome to the group

All of the symptoms that you listed are part of the disease.

I understand completely what it is like to deal with the VA. I to have had to deal with them for my second round of treatment. It took me two years and a letter to my congressman to get them to start treatment. I don't know where you live, but I was treated at the VA hospital in San . They had a real good program for treatment there once I got started. It was run by an RN who worked with the DR. I think they did it that way because of all of us vets that have been infected. She had about 4 or 5 thousand patients a month. Hang in there the VA works at their own speed but will probably get your husband started on treatment eventually. Luckily it is a very slow progressing disease.

[ ] Newbie

Hello Everyone, I am Betty and my husband has just been given a diagnosis of hep c. He is in the first stage of denial and I am focusing my anger on the doctors,,,he goes to the VA. :-) He has been trying to find out what he is suffering with for 4 years now and they "say" they have done every test known and that everything has come out negative or within normal limits. For these past 4 years (it just one day started out of the blue) he has been experiencing severe fatigue,muscle pain and weakness,joint pain,sleep disturbances and even an unexplained itching with no rash or skin disorder associated. There are some other symptoms as well.Not once did they ever suggest a hep c test. On our most recent visit to the VA with yet another new doctor,,they do not seem to stick around too long at the VA,she tells him she is overwhelmed with his chart and possibly he should see a psychiatrist for all these unexplained ailments for it might be depression. We are so sick and tired of this dance they do when they have no answers!!! THEN she says,Some of these symptoms might be from the hep c ,I am sure they have discussed this with you!!!! Our mouths dropped open and she could see the shock on our faces. What HEP C ???? Apparently in November of 2001 they did a hep c test and it came back positive,but failed to contact him!We left the Va in shock , but somewhat relieved to have a possible answer for all that he is experiencing.We drove to the nearest bookstore where we looked at a few of the popular hep c books,,,,,then we were not sure we were relieved LOLOL ,,,just no pleasing us! They have done another test to make sure the first one was correct it came back positive and now they have done a pcr test which has come back positive. I understand that there are two types of pcr tests one is qualitive and one is quantitive ,,is it true that only one gives viral load amounts??? We are so new to this and struggling to make sense of it all. We are told that he has probably had this in his system for 30 years as he used to be an IV drug user,,however we are confused as he had a life insurance exam less than 2 years ago and nothing came up at that time. He did have a spinal tap just under 2 years ago,,,blah blah blah,,I realize that many people never find out when or where but this time frame seems strange to us because of the life insurance exam. We are pretty positive minded people and I have no doubt that we will get through this especially since I have seen so much support available like this group.One last thing,,,, we feel that because they did not tell him that he has lost 6 months of possible treatment and they claim 6 months does not make a bit of difference ,,is this true and if so how do they know that without any sort of biopsy or blood work?.He was also told that his symptoms must be from something else because the symptoms he explains would only come in the later stages. He has an appt at the end of June............Sorry for this short novel and all the rantings,,,thanks for being here ,Blessings to all,Betty

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Hi Betty. The VA has been notoriously slow in recognizing and/or admitting the governments role in the spread of it. The disease is very slow progressing, so the 6 mos delay may not be a big factor, but not knowing you have hcv raises the potential of you unknowingly passing the disease on to others. We have to take certain precautions with our . (Razors, toothbrushes, etc.) We have found that the dr's often do not believe that many of our symptoms come from the hcv when we know better. A normal physical will not necessarily catch the presence of hcv, I had several physicals between the time I had it and found out I had it. Elevated enzyme levels on a liver panel should be the first red light, but drs often ignore this, as these levels can fluctuate from other influences (aspirin, alcohol, etc.). I believe you are right about the PCR. There are many different ones they do. Mine would only measure up to 1 million units, so all I knew was that I was over that. I have been through the combo treatment and am currently in remission. Welcome to the group and feel free to ask any questions that come to mind. I have found I got much more information from others going through this than I did from the drs. Many symptoms you may not think are related to the hcv, are. -dz-

mystic <mystic1@...> wrote:

Hello Everyone, I am Betty and my husband has just been given a diagnosis of hep c. He is in the first stage of denial and I am focusing my anger on the doctors,,,he goes to the VA. :-) He has been trying to find out what he is suffering with for 4 years now and they "say" they have done every test known and that everything has come out negative or within normal limits. For these past 4 years (it just one day started out of the blue) he has been experiencing severe fatigue,muscle pain and weakness,joint pain,sleep disturbances and even an unexplained itching with no rash or skin disorder associated. There are some other symptoms as well.Not once did they ever suggest a hep c test. On our most recent visit to the VA with yet another new doctor,,they do not seem to stick around too long at the VA,she tells him she is overwhelmed with his chart and possibly he should see a psychiatrist for all these unexplained ailments for it might be depression. We are so sick and tired of this dance they do when they have no answers!!! THEN she says,Some of these symptoms might be from the hep c ,I am sure they have discussed this with you!!!! Our mouths dropped open and she could see the shock on our faces. What HEP C ???? Apparently in November of 2001 they did a hep c test and it came back positive,but failed to contact him!We left the Va in shock , but somewhat relieved to have a possible answer for all that he is experiencing.We drove to the nearest bookstore where we looked at a few of the popular hep c books,,,,,then we were not sure we were relieved LOLOL ,,,just no pleasing us! They have done another test to make sure the first one was correct it came back positive and now they have done a pcr test which has come back positive. I understand that there are two types of pcr tests one is qualitive and one is quantitive ,,is it true that only one gives viral load amounts??? We are so new to this and struggling to make sense of it all. We are told that he has probably had this in his system for 30 years as he used to be an IV user,,however we are confused as he had a life insurance exam less than 2 years ago and nothing came up at that time. He did have a spinal tap just under 2 years ago,,,blah blah blah,,I realize that many people never find out when or where but this time frame seems strange to us because of the life insurance exam. We are pretty positive minded people and I have no doubt that we will get through this especially since I have seen so much support available like this group.One last thing,,,, we feel that because they did not tell him that he has lost 6 months of possible treatment and they claim 6 months does not make a bit of difference ,,is this true and if so how do they know that without any sort of biopsy or work?.He was also told that his symptoms must be from something else because the symptoms he explains would only come in the later stages. He has an appt at the end of June............Sorry for this short novel and all the rantings,,,thanks for being here ,Blessings to all,Betty

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  • 4 months later...

I think you are right about the hep b vaccination. Something doesn't sound right there. Hopefully the answer is that he does not have hep B only C. It's hard to get clear information from these people. You have to eventually find the right person to talk to to get the straight facts. When I was diagnosed with hep C, they tested for the presence of hep B and hep A antibodies before vaccinating me. They found the presence of hep A antibodies, so I did not have to have that vaccination. Good luck, it takes a while to get a good handle on the information you need. -dz-

laura_reynolds0 wrote:

Hi, and thanks for the welcome....I am here because my husband was just diagnosed with Hep B & C.....He went to the Dr. on the 21st of Aug and all they did was a bunch of blood work and told him to come back in 6 weeks and they will discuse doing the biopsy...The Dr. also told him he needed to get a vacc. for Hep A and B.....I can understand geting the hep A vacc, but why the Hep B when he already has the disease?? What would be the point....I have worked in Healthcare for 11 yrs and have never heard this.....Does anyone know??My husband is 36, and dont know where he got the virus, could have been a blood transfusion years ago....Who knows, anyway, he wont join a support group, so I did......Hope I can learn alot from all of you......

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Hi , welcome to the group. That sounds a little weird to me too. If he already has it, he shouldn't need the vaccine too. He might ask the dr. again. We're always here to listen and try to help.

Sharon

laura_reynolds0 wrote:

Hi, and thanks for the welcome....I am here because my husband was just diagnosed with Hep B & C.....He went to the Dr. on the 21st of Aug and all they did was a bunch of blood work and told him to come back in 6 weeks and they will discuse doing the biopsy...The Dr. also told him he needed to get a vacc. for Hep A and B.....I can understand geting the hep A vacc, but why the Hep B when he already has the disease?? What would be the point....I have worked in Healthcare for 11 yrs and have never heard this.....Does anyone know??My husband is 36, and dont know where he got the virus, could have been a blood transfusion years ago....Who knows, anyway, he wont join a support group, so I did......Hope I can learn alot from all of you......

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I hope you can find all your answers here..This is a great group of people who are more than happy to answer your questions or give you some support..I am Jan...Please keep in touch.

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Hey Jan, how's Cajun country today? We got a little

rain the last two days. They keep saying it's going to

rain but if it doesn't hurry I'm going to have to

water my garden.

Sharon

--- Jannewilms43@... wrote:

> Sharon are you getting any bad weather yet?? Looks

> like it's heading your

> way..We are suppose to get some of it here..

>

__________________________________________________

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Sharon I think you should be getting rain now..I been watching the weather almost all day today..We haven't gotten any yet but we are waiting for alittle too...Let me know if ya need a canoe or something ok?? RUN Sharon...RUN

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It started raining a little after 6. I waited all day

for the last shipment of my meds. The guy got here

around 6, so I've managed to go out and get movies and

food and I'm hunkering down for the duration. You know

how these storms go, it could be horrible or it could

be no big deal. If I don't run soon, I may have to

swim away.

Sharon

--- Jannewilms43@... wrote:

> Sharon I think you should be getting rain now..I

> been watching the weather

> almost all day today..We haven't gotten any yet but

> we are waiting for

> alittle too...Let me know if ya need a canoe or

> something ok?? RUN

> Sharon...RUN

>

__________________________________________________

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We finally got some rain here. At least here at work in southwest part of Phoenix. Susy said they got some at the house.

Terry

Jannewilms43@... wrote:

Sharon I think you should be getting rain now..I been watching the weather almost all day today..We haven't gotten any yet but we are waiting for alittle too...Let me know if ya need a canoe or something ok?? RUN Sharon...RUN

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We haven't gotten any rain here at all......It's cloudy here but no rain yet..I think we will get some after all though..I think there is a 50% chance of it..I don't know for sure but I do't plan on going anywhere today anyway so it can rain all it wants to..LOL...

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