Sandy

[Guest guest]

Sandy Catalusci wrote:

Squeek,

Your mouse pictures are cute.

I'm doing okay today. How are you doing?

Sandy

O.K. Up and down! You know how that goes. Glad you are having a good day today. Take care! Love, squeek

Sandy Catalusci wrote:

-- Re: squeek

There, I changed my dress. Does this one look more like me? What is my life coming too? You see a mouse and think of me....Heidi sees cheese or wants a cheese sandwich and thinks of me. I guess it will all be o.k. so long as I don't leave any droppings at the reunion. YUCK! Love you, squeek Glenda McClennen wrote:

Squeek

Love the picture now I will think of you when I see a mouse!LOL How cute. Can't say it looks like you much!LOL

Lots of love

Glenda

Re: squeek

Oh Dawn, You have proven yourself to be an excellent nagger so I can only assume that you excel at worry too. Now, just take some time off from all that stuff and get well. Love, squeek P.S. How do you like my picture, here? Dawn wrote: 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

[Guest guest]

How are you doing today?

The Question Sandy is HOW ARE YOU??? You never tell us anymore!! Come on now, you have to stop being so quiet, it's not like you. lOL

How is and the girls doing? How is the rest of the family? Fill us all in. Are you sewing for Christmas yet?? Oh..... I have to get started!

I think of you all the time...

hugs

[Guest guest]

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.

[Guest guest]

Hi ,

Yes, I started my Christmas sewing on Sept 1st. If I don't start early I would never get it done.

The girls are doing fine. had her MRI this week and the Tumor is still the same.

My little is driving now.

No more school bus for her. LOL

I'm having a hard time keeping up with the mail. Thought about going no mail for awhile but don't want to miss anything.

Have not been doing well at all.

You know me though, I don't like to complain. And yes Glenda, I am stubborn. LOL

Must be the German in me.

Went through a bad 2 month flare of Vasculitis. Having real bad flares in my inner ears. I saw the eye Doc last week and was dx. with ocular migraines.

Got my bone density done and I am losing bone mass, so am now on a med. for that.

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. It probably upset me more that it happened in front of my grandkids.

I've just been feeling down because I've been having so many problems lately. My Rheumy does not think the Cytoxan is working for me. All it is doing is making all my hair fall out. What a pretty sight I am. LOL

Well, thats the latest with me.

Hugs,

Sandy

-- Re: Sandy

How are you doing today?The Question Sandy is HOW ARE YOU??? You never tell us anymore!! Come on now, you have to stop being so quiet, it's not like you. lOL How is and the girls doing? How is the rest of the family? Fill us all in. Are you sewing for Christmas yet?? Oh..... I have to get started! I think of you all the time... hugs 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

[Guest guest]

Hi Sandy:

Cath here, trying to get caught up on lots of e-mails. Have you had a SED rate done recently. There is something called temporal arteritis that is an inflammation of the main artery in the temporal area. It can cause pain in the temporal area and people say that is feels like their nerves are on fire in their scalp. Patients I work with say brushing their hair hurts them. Other symptoms associated are headache,neck stiffness, jaw pain, nausea, loss of weight (ha on Pred). It is real serious when it occurs and needs immediate treatment. Haven't seen a case where pain was only for a very short duration, but some with it do not have pain at all.

Inflammation of the artery causes a decrease in the blood flow and can cause sudden decrease in vision in one or both eyes too. If it is temporal arteritis I know we have patients start on 80 mg of Pred and see a neurologist immediately. The SED rate can detect the condition, but sometimes SED rate comes back ok and they do a temporal artery biopsy and it is positive. Have even seen a few where they felt even though all results were negative, they felt they had it.

In any case, I know if in question, we always start patients on Pred immediately because of potential problems and then start testing. In their minds, it is better or over treat on this than not treat due to problems that can occur.

In any case, I am not a doctor so am just throwing this out for you in case it might help. I've been in the medical field for 19 years so have seen alot of cases of this.

Hope this helps a little but under any circumstances, call your rheumy and speak with him immediately. Have him paged if not in.

Hope everything is ok by now. Please keep us posted on how you are doing.

Take care,

Cath

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

[Guest guest]

Hi Cath,

I am currently on 18mg of Pred.

It would be hard to check my vision because I have cataracts. My right eye has the worse cataract of the two. I have been having terrible pain deep inside my right ear for several weeks.

I really appreciate all the info you share with us.

Thank you so much.

Sandy

-- Re: Sandy

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

[Guest guest]

Hi Glenda,

I have lost 1 1/2 inches in height

so far. Wasn't very tall to begin with so I would prefer not to get any shorter. LOL

I have not started my doll clothes yet. I have to finish 42

pair of flannel lounge pants first.

Yes, I have been letting

drive me around. She is a very good driver. My husband is very

happy because he has a fit every time I drive the car. He does not

like me driving because of the cataracts. I told him not to worry because I take with me so she can tell me what color the traffic lights are. LOL Drives

him crazy!!

Did you finish Shae's room yet?

I'm waiting to see pictures.

Hugs,

Sandy

-- Re: Sandy

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

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

[Guest guest]

Thank you Sharon.

Know that I am also praying for you

and your family. I am so sorry that you

and your family are going through so

much pain.

Gentle hugs,

Sandy

-- Sandy

Sandy, I hope you start to feel better real soon. I will be saying a Prayer for you and your darling daugher. 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

[Guest guest]

Sandy the Doc at Cleveland name is Sudhakar T Sridharan he just sent me a letter I just don't know if this is a one day visit or longer. I think I will call to find out?

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

[Guest guest]

Sherrie,

I do not know this Doctor.

Are you from Ohio?

Sandy

-- 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

[Guest guest]

Sandy:

I don't post often, but every once in a while something hits me, like what

you posted today about your appointment with the doctor about your thyroid.

I know I need to loose weight, and I thought well maybe that doesn't sound

too bad for a week, if I would really loose that amount of weight, though it

sounds like once I got back to eating other food, I'd probably gain it all

back, and probably more! But what really hit me was, if the diet is so good,

why on earth would he need to prescribe medication (amphetamines no less) to

take along with it? Maybe there is something a bit more in between? Just my

thoughts on the subject!

I don't know how comfortable you are with your current doctors. Would there

be any point, in your opinion, to see the new doctors he recommends? Wonder

if they're like him? It's a conspiracy!

Hope you are ok, and don't let it get you down. Usually in these situations,

I try to take what information is useful, and leave that information that

isn't!

HUGS!

Robin