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Sharon,

I'm from North Ridgeville in Lorain County.

My husband works in Euclid. He works for Metropolitan Bank. Where do you live in Euclid? We are not that far from each other.

Sandy

So am I! What part are you from? I'm in Euclid OH. That still is Cuyahoga County but just a couple of streets away from Lake County. Love, Sharon DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Oh My Gosh, Sandy, we are very close to each other. I live right on Lloyd Rd by the lake in the condos that start on LakeShore and go right into Lloyd Rd.

What part of Euclid does your husband work in.

Love, Sharon

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Hi Sharon,

My husband works at the Metro Bank on East 260th. He said he is very close to where you live.

Sandy

Re: Sandy

Oh My Gosh, Sandy, we are very close to each other. I live right on Lloyd Rd by the lake in the condos that start on LakeShore and go right into Lloyd Rd. What part of Euclid does your husband work in. Love, Sharon DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Hi Sandy, I will pray for your daughter and for you.

Please keep us informed when you can. love, squeek

--- Sandy Catalusci wrote:

> Glenda,

> Ruthann and Sharon will be in my prayers.

> Also, I would like to ask for prayers for my

> daughter . She has not felt well and went for

> blood work yesterday.Her PCP called her first thing

> this morning and told her to get to the hospital.

> They think it is her pancreas as they found 2

> masses. I just talked to her and she just had a CAT

> Scan done but does not know anything yet.

> Love,

> Sandy

>

>

>

> Evening All

> I just wanted to let you know that one of the

> members is having a really rough time. She is fight

> RP big time. Please keep Ruthann in your thoughts

> and prayers. She is going to be taking mega doses

> of Pred to get the RP under control. This is life

> threatening so please, please bond together now and

> send her good thoughts.

>

> Also Sharon is still fighting RP and complications

> from the surgery. Lets uplift her also. I hope she

> makes an appt. soon with the pain management dr. It

> has to be a step in the right direction. When you

> are hurting there is just no relief from anything.

>

> Come on guys! I know you can do it! We have

> before and we can do it again! Remember GOOD

> Thoughts! For all of our members that are hurting I

> am sending mega good thoughts and prayers.

> Lots of love

> Glenda

>

>

>

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Thanks Squeek.

I'll let you know how she is doing.

Sandy

Hi Sandy, I will pray for your daughter and for you. Please keep us informed when you can. love, squeek--- Sandy Catalusci wrote:> Glenda,> Ruthann and Sharon will be in my prayers.> Also, I would like to ask for prayers for my> daughter . She has not felt well and went for> blood work yesterday.Her PCP called her first thing> this morning and told her to get to the hospital.> They think it is her pancreas as they found 2> masses. I just talked to her and she just had a CAT> Scan done but does not know anything yet.> Love,> Sandy> > > > Evening All> I just wanted to let you know that one of the> members is having a really rough time. She is fight> RP big time. Please keep Ruthann in your thoughts> and prayers. She is going to be taking mega doses> of Pred to get the RP under control. This is life> threatening so please, please bond together now and> send her good thoughts.> > Also Sharon is still fighting RP and complications> from the surgery. Lets uplift her also. I hope she> makes an appt. soon with the pain management dr. It> has to be a step in the right direction. When you> are hurting there is just no relief from anything.> > Come on guys! I know you can do it! We have> before and we can do it again! Remember GOOD> Thoughts! For all of our members that are hurting I> am sending mega good thoughts and prayers.> Lots of love> Glenda> > >

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  • 4 weeks later...

gosh, It is so good to hear from you. Bet you had a busy summer. I'm sorry

about 's seizures, but like the good news that the tumor is the same.

How are you doing? I worry about you Sandy and have missed hearing from

you. Hope you can be back on line more. Know that you and your family are

in my thoughts and prayers daily. Tell and Hi for me. They sure

are sweeties.

hugs

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Hi ,

Had a lot of health problems this summer, but I'm doing better now.

How are you doing? Is your recovery continuing to go well? I am amazed by how well you have been doing.

How are your daughters doing?

I will pass on your greeting to my girls.

Love Ya,

Sandygosh, It is so good to hear from you. Bet you had a busy summer. I'm sorry about 's seizures, but like the good news that the tumor is the same. How are you doing? I worry about you Sandy and have missed hearing from you. Hope you can be back on line more. Know that you and your family are in my thoughts and prayers daily. Tell and Hi for me. They sure are sweeties. hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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--- Sandy Catalusci wrote:

> Hi Lu,

> I'm doing okay. Are you doing any better?

> is doing better, had some trouble last

> week. They are having trouble regulating her

> Dilantin and she had 2 grand mal seizures back to

> back last week. She ended up staying with me for a

> couple of days. Her hubby was concerned about

> leaving her alone till she felt better. At her last

> exam her tumor was still the same size which made

> her Docs happy.

> Love Ya,

> Sandy

Hi Sandy,

So good to see posts from you. Everytime I see one, I

think of and wonder how she is, so thanks for

the update. Sorry to hear about the seizures, but it

is good that the tumor is not growing.

Take good care of yourself! Love, squeek

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY

> INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE

> ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

> ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE

> FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE.

> REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE

> DIFFERENT FOR MANY OF US. THANK YOU

>

>

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Sandy

Good to hear that the tumor is the same size. Sorry to hear that had the two seizures that doesn't sound too good. Hope they get a handle on the meds soon. Has to be scary for you all. I will keep and you in my thoughts and prayers.

Lots of love

Glenda

Re: Digest Number 2711/ Sandy

Hi Lu,

I'm doing okay. Are you doing any better?

is doing better, had some trouble last week. They are having trouble regulating her Dilantin and she had 2 grand mal seizures back to back last week. She ended up staying with me for a couple of days. Her hubby was concerned about leaving her alone till she felt better. At her last exam her tumor was still the same size which made her Docs happy.

Love Ya,

Sandy

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Hi Sandy, I just read the post about Valarie having the two seizures. I'm sorry to hear this but please know that she will be in my Prayers. How are you doing Sandy?

I am sending hugs your way.

Love, Sharon

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Hi Sharon,

I'm doing okay. Thanks for the hugs and know I will be keeping your husband in my prayers.

Where is he having his biopsy done?

SandyHi Sandy, I just read the post about Valarie having the two seizures. I'm sorry to hear this but please know that she will be in my Prayers. How are you doing Sandy? I am sending hugs your way. Love, Sharon DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Sharon,

Yes I know where Metro is.

Sandy

Sandy, do you mean what hospital? He's having it done at Metro. Do you know where that's at? Thanks for your Prayers. Sharon DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Thanks so much, Sandy! You know how mom's are...when

our kids hurt, we hurt right along with them. It has

been a long day and I am exhausted, but he is o.k. and

that is what matters. Love, squeek

--- Sandy Catalusci wrote:

> Hi Squeek,

> Glad to hear you son is doing okay.

>

> Sandy

>

> -- Re: Glenda/Everyone

>

> Geesh! I got a worrier confused with a nagger! Oh

> well, will be back soon and if we need

> nagging

> before then Heidi will notice.

>

> Just a note to all. My son is home after his oral

> surgery and doing o.k. He bled a bit more than they

> expected and has thrown up a couple of times as the

> anesthesia wears off. We did the tea bag trick and

> the bleeding is down to a small trickle now. I am

> making him stay down...not a hard thing to do at

> this

> point. He is just now starting to feel pain, but

> still sorta nauseated and does not want to eat.

> Can't

> take the percocet until he eats, so just got some

> tylenol down him. If anyone wants to send some

> prayers up for him---feel free. According to the

> instructions, the worst is yet to come.

>

> Love to all, squeek

> --- Glenda McClennen wrote:

> > Squeek,

> > I am not a very good nagger. Dawn just has to get

> > well fast so she can do it. She is definitely a

> > good one!

> > Lots of love

> > Glenda

> >

> > Now who will nag until

> > gets home tomorrow? Glenda....where are

> > you?

> > Feel like nagging? Rest, Dawn, and take good

> care

> > of

> > yourself. Hope you get over this flare really

> > quickly.

> >

> > Love, squeek

> >

>

>

> =====

>

>

> __________________________________________________

>

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  • 1 month later...

Sandy:

Does increase in pred make the pain lessen any? How much pred are you currently on. There is alot of controversy over whether to biopsy or not so technically ophthalmologist is not out of line.

Please keep a close check on your vision. Check each eye individually each day. Pick a scare area like a cupboard or someplace you can put something with writing on it and do a quick check each day to make sure vision is not changing. You can actually lose up to 1/2 of your vision in 1 eye before your brain can really tell something is wrong because the field of vision in eyes overlap. That is why it is important to check each eye separately. Mind you don't drive yourself crazy it really only takes about 20 seconds to do.

You may want to watch your hearing also. I remember Pete lost his hearing within hours due to inflammation in the nerve in his ear (I think I'm correct but then again I'm on pred!!). In any case if your vision gets blurry, we always tell patients to up pred just to make sure because vision loss is almost alway permanent.

Interestingly enough when I was so anemic my my SED rate went to 70 which was really high. Was due in my case due to the way the test works. They measure the blood cells as they settle at the bottom of a test tube over an hour and the more there are the higher the SED rate. In my case I was told I didn't have enough blood cells circulating to hold each other up so they fell to the bottom real quick, ie: high SED rate. Hematologist I saw took one look at labs and said with iron infusions he could get my hemaglobin back to normal and then everything should settle down. Sure enough he was exactly right. Most primary care docs don't pay enough attention to abnormal blood work especially the funky stuff. Even my rheumy didn't suggest anything. In fact I wouldn't have known how anemic I was except for the fact that I alway carbon copy the results to my doctors office so I can have for my records. In this case it may have saved my life. Rheumy never even called with results. I had to call them. Anyway. I highly suggest if anyone is severly anemic or even if blood gets out of whack from methotrexate etc, that they get a referral to a hematologist. They work with patients with our blood counts all the time. I can't believe all this time no one except the new primary I went to suggested this. I know him personally and he runs tons of tests, but he does usually find out stuff. Of note also is that hematologist listened to my history better ( I believe since they deal with such sick people all the time), and he is the one that said I had too many neurological things going on and that I needed to see the Neurologist. Sure enough it was Myasthenia Gravis so he helped explain alot of those problems. The hematologist is one doctor I haven't heard too many talk of referrals to, maybe they can be of benefit to those of us with complicated labs.

Sorry post so long, but you know me I always throw stuff out for people to think about. Again for the newer members, I am not a doctor or professing to follow what I am doing, just want to help out those of us who are running out of resources and give hope that things can get somewhat better.

Hope your pain subsides, let me know if I can help in any other way!

Cath

Since Rheumy wanted biopsy I would think you have an elevated SED rate. Make sure you get bloodwork when it seems worse.

Re: Sandy

Gee Sandy, You should call the doctor or go see one, your right you don't know what is going on and falling out with a sharp pain to the head could be many things, which I won't go into. But please let him know about this soon. I pray you start feeling better soon. I'm so happy is doing better. I love you! Lu

Had my daughter and grandkids over for dinner last night and got up from the table and fell to the floor. I was not dizzy nor did I lose consciousness. My daughter caught me before I hit my head.After I fell I got a severe pain in my right temple and my scalp felt like it was on fire. I have no clue as to what is going on. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Sandy

What am I going to do with you! Heidi is going to have to send you some of her pain meds. I knew you were being to quiet. I hope that things start to settle down for you soon. Gish you don't need those bones disappearing you are already short enough as it is. Sandy you are such a sweetie I wish I could make you feel all better.

Glad to hear that is still doing well and the tumor is minding it's own business. Wow no more bus for . Have you rode with her yet!LOL She is such a sweetie probably is a great driver. Your grandkids are so lucky to have such a neat grandma. Are you making the doll dresses or outfits this year?

Take care and please take care you. We miss you when you are not here.

Lots of love

Glenda

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  • 2 months later...

I AM FROM MICHIGAN. THEY SAID IT IS ABOUT A 4 HOUR DRIVE FOR ME.

SHERRIE

-- Hi all,,, its me finally

Well,,, I have good news and bad news.... The good news is My biopsies finally came back and the were benign so I just have to watch it every so many months. It has been very busy here with both girls and there concerts (choir,orchestra), and then dance and church youth group parties. I haven't even found time to do my usual baking let alone the energy in which to do it. I have an orthopedic appt on Thurs. which brings some of the bad news... a week ago I collided with our German shepherd out on the driveway. Fell hard on both knees, but the left one I have barely no cartlidge in, well they think I tore part of my medial collateral ligament, they have me in a brace, I am totally bruised up on the inside and no one can touch it. so we will see what they say.. I also have an appt to see a neurologist as my headaches are getting worse and it is affecting my eyes. Plus my memory I remember about half of what i am being told. It drives me nuts as my memory was one of the best things about me that i had. Another good news,,, we got snow,,,,,,, albiet maybe a few inches but its snow...... for Christmas........ woohooo. I pray that all is well with each and every one of you. I miss not being on here alot. and being with you as I need you all lots... am glad you got a good rheumy, now maybe that stress can go away. Heidi how are things going for you and hubby? Michell c., sherrie, dawn, carol keep smiling the Lord has brighter days ahead. susiecue hang in there.... squeeks, nan hope you are doing well. How is judy doing by the way? havent been on soo don't know. Glenda have a wonderful time with your family. To all those I didn't mention you are in my prayers and my God Bless You. If any of you have any sites or newsletters on rp pleease re send.... my comp has been acting up soo much lately I can't even get my scanner to work again,,,ughh,,,,... Well all I want to wish each and everyone of you a

Very Merry Christmas and a Safe Happy and Healthy New Year

Always,,,, Barbara aka bj

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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  • 1 year later...

Hi Sandy,

Are you taking pancreatic enzymes? They can help with the problem that you

describe. If you are already taking them, maybe your dose needs to be increased.

Sue

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