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View Full Version : Ignorance is not bliss!



Southernbelle
01-12-2007, 04:04 PM
I am just wondering what your sed rates are. My hubby, Larry, as some of you may know from prior posts, has SLE Lupus, among other autoimmune diseases, and today was the first time we have been told his sed rate. We were both so ignorant of Lupus facts, that we didn't even know what to ask and his doctor never volunteered any information. We went to see a brand new doctor, and boy what a difference! Today his rate was 7 and so when we got home, I called his old doctor and told them I wanted to know all of his previous sed rates from June until December 2006. They only had three recorded, September, October and December. In September it was 66, October it was 22, and in December it was 12, and now he's down to 7. It looks like the plaquenil is working! I am aware that this may change according to inflamation, but at least I know what it is now.

SoleSinger
01-12-2007, 05:29 PM
Mine was 108 when I was diagnosed... now it's like 69 or something... Normal is between 0 and 20 So YAY! I'm glad your husband's results are looking better!!!

MARYCAIN
01-12-2007, 06:12 PM
A women's sed rate is normally slighter higher than a man's, and your normal rate increases slightly with age. So for men younger than 50, the normal range is zero to 15 mm/hour, for a man over 50 it's zero to 20 mm/hour. The "normal" range for women under fifty is zero to 25 mm/hour, for women fifty and over it's zero to 30 mm/hour. And things like an acute infection, or appendicitis can send it very high. Mine always goes up when my prednisone dose is lowered. But I'm really happy the meds seem to be working for Larry.

Southernbelle
01-12-2007, 06:34 PM
Yes, finally it appears that at least a few things are looking better. Larry is a young 60, so we are very pleased with the new number. We have no idea what his rate was when he first was diagnosed. There's not much telling. I will be glad when we get the rest of the results. Also, the cyst on his pancreas has gotten alot smaller, about an inch round now, and his pancreas duct is no longer blocked. So in the last 2 weeks, we have found out that his heart is in good shape and his cyst has gotten smaller, the duct is no longer blocked and he has a good sed rate. Thank God, it's been a rough way to go for a long while now. You all know what I'm talking about. You live it! A little relief is so appreciated. Thanks to all on this board who have been so helpful from the first time I posted!

Grace

littlered
01-12-2007, 08:50 PM
Southernbelle, I am glad to hear such good news! *happyhappyjoyjoy dance* Love, Kathy

Southernbelle
01-12-2007, 09:07 PM
Kathy, thank you so much! I know he will never be cured, I just want him to feel better! Our lives have changed so much.......I would just love to have at least a small part of our old lives back!

:) Grace

IloveHistory
01-13-2007, 05:59 AM
Hi Southernbelle

I'm SO pleased to hear that your husband's health is improving day by day! :) I have read some of your previous posts and was really quite worried about him!

I'm sure that your love and support are among the main reasons why he is getting better. He is very lucky to have you! :)

Keep well! :)

mnjodette
01-13-2007, 12:29 PM
Great news, Southernbelle! What a relief for both of you. An answer to prayers!

cryssyjojo
01-13-2007, 04:41 PM
I will keep saying my prayers fro your husband.. I'm really happy things are getting better.. God bless your both

Southernbelle
01-13-2007, 05:51 PM
Thanks to all of you! He has felt better today, and I can't help but think that some of it is because he felt alot of relief after seeing the new doctor yesterday. I am, on the other hand not having a great day. I just got the news about an hour ago that my cousin just died. Totally unexpected. We played together all the time as kids and this is hard.

Grace

Missy
01-13-2007, 10:58 PM
I was so sorry to read of your loss. You have had so much on you rplate lately, too. Sometimes life is just so unfair. Please know I'm thinking of you.

To answer your question - My sed rate at diagnosis was 120 and currently is 8.

IloveHistory
01-13-2007, 11:34 PM
Oh, Southernbelle! I am SO sorry for your loss. I know that this is a really hard time for you. I will continue to pray for both of you. God bless you.

Southernbelle
01-14-2007, 10:10 AM
I have really started to look at life and the way I should live it alot differently since my mom died in June, actually a little even before that. Our daughter-inlaw committed suicide Christmas Day 2005 ( that was horrible! ), then (for doggie lovers ) I lost my precious little toy poodle, Angel, on May 9th, who was so fat she looked like a sumo wrestler, but was my baby! She was 13 years old and had Cushings disease. She was not your normal poodle, not prissy or girlie, she was so cute. Then on June 23 my mom died, the first week in July we had to put my dad in the Health Center, where he will be until his last day, about a week later we got all the news about my husband having the 4 autoimmune diseases he has, and then he lost his job with the company he had been with for over 20 years. So it has been rough, but this board has helped me so much. I know in my heart that I would not have come along this far without you all. You have no idea how many xanax and how many antidepressants I have been through. Now I am down to Lexapro once a day. Even when I lost friends because they did not understand how this all feels, I have made it to where I am now with prayer and the help of this board. I was previously on another private board with only 7 ladies on it. It was a board for ladies who had motorcycles, or rode with their husbands. We have a 2005 honda goldwing 1800. Everything went great for over a year, we called each other, sent each other cards and talked on the phone and emailed constantly. I thought we were close. When Larry got sick, I got comments like "put your big girl panties on" or I have sympathy, but not that much" or " you have a choice to stay weak or make yourself stronger," and I know all of you can see how this put me into a black pit. I resigned and found this board, and only one person from the old board has continued to be my friend. My doctor told me that when you are in a crisis, that you will find that 1 out of 10 people are truly your friend. I was so stupid in thinking they would understand. It is so nice to be able to come here and just say how I feel and know that I will be understood. How cool is that?? I constantly thank the higher power for making our lives get better day by day. It has been a struggle, but as I said before, I truly believe that 2007 will be better. I know that my husband and I are not alone in all of this. I know all of you have your constant ups and downs and I know how much your lives have been changed also. I also know how hard it can be on the whole family. I guess we are all in this together, and since we all are having these problems, I can think of no better place to come to. Thanks to you all!

Grace

Milagro
01-14-2007, 11:28 AM
about me until this past summer (I am 39). My SED rate doesn't seem to register any inflammation, even though I am in extreme pain AND have visible inflammation. Does this make sense?

BTW, I am on plaquenil, relafen, and methotrexate.

MARYCAIN
01-14-2007, 01:20 PM
Grace, the people who turned away from you because of your husband's illness are the real losers here, because they will never experience the joys, blessings and sometimes pains of a deep and true friendship that both gives and receives. Friendship truly is a two-way street. And when those people find themselves in need - and someday they will - who will they have left to turn to? I feel sorry for people who are that shallow because they are missing out on a lot in life.

I am very sorry for your cousin's loss - it must seem like one grief piling on top of another right now.

val
01-14-2007, 01:45 PM
Hi Milagro,
Sorry I pop i infrequently but have had lots of support here too. Unlike most of you I am in the Uk. My Sed rate is 41, its been about the same since I started to be ill in 2001. i am on low dose prednisolone but it doesn't seem to alter much
I have lost lots of my friends too. They think you look fine and can't understand why you cannot do what you used too. I have just let them go
Val

Southernbelle
01-14-2007, 06:08 PM
I don't understand how you could not have inflamation. Did your doctor explain it to you? My husband, Larry, has a sed rate of 7 now, down from who knows what, because his old doctor did not see fit to record anything. He hurts alot and I know he is not faking! I just wish everyone on this board who has these awful diseases would just get better. After going through this with Larry, I would not even wish any of this on my worst enemy.

Take care,
Grace

Southernbelle
01-14-2007, 06:17 PM
You know even though I mentioned it in my post, it is something that I do not worry about anymore! I get awesome support here and my family is great and that is all I need. This board is a lifesaver for me. Not only do I learn immense information, I get major support! I haven't had one person on this board to tell me to put my big girl panties on and that other people have it worse than me. I know there are many people out there who are in bad shape, I don't have to be told this.
My cousins death was so unexpected, it really caught me off guard. I am so much stronger now than I was just a few months ago. I will not let this get me back down. I like to think that right now she is with my mom and my grandma!
Grace

Southernbelle
01-14-2007, 06:28 PM
I know for a fact that people just do not understand how someone can be so sick and not look bad. Sometimes if I am in a mood, :evil: I also think they don't care to understand as long as it doesn't affect them. My husband still looks good to me, except when he is in a flare, and then it shows all over his face. I think I saw somewhere online that there is a book out there called "But you don't look sick." Have you heard of it?

Grace