Help me out here ladies. I had a Doctor's appointment Friday and didn't get very good news. I have some new signs and symptoms, that the Doctor is very concerned about. I have said that my Doctor is 99% I have Lupus, but no official diagnosis until I have the brain scan. Well, now he is going....It's Lupus and very progressive right now. My thyroid appears to be enlarged, which is common for Lupus, but normally takes a few years. I have also developed some major hip and knee pain, which is also common. I was running a mild fever, but not sick, which is also a major sign.
So he will be calling this week to schedule a full thyroid blood panel and a ultrasound. He is also referring me on to a Rheumatologist because he feels like it is Lupus and progressing too fast. Ok, I can handle all that. I think the biggie is he said if the Rheumatologist does agree that it is Lupus and very progressive right now, they will start me on rounds of medication that will make me very sick. He said the medicines are the same they use in Chemo, and no fun. But, they have to attack it before it starts attacking my organs.
So I am asking for good thoughts from you guys that the Rheumatologist says it's something else that can be cured, or that I can tolerate the treatment well as I am not looking forward to it.
Sending all kinds of positive vibes. That sounds scary and I am with you every step of the way.
Oh no, Pooh!
I'm sorry about this...I'll be hoping for the best outcome. Please keep us posted. I know that must be very scary.
Thanks guys. I am not going to lie, I am scared. I will deal with it and do what I must, but scared none the less. Want to hear the worst part of my fear? I hate to throw up! I mean...hate it with a passion. I know its not funny, but part of me is like, so that's what you are dreading? That's sooo sad. And just so you guys know, DH and I had our first kind-of fight because I withheld information from him. He showed up for my Doc's appointment (I wasn't expecting him to be there) and when my Doc started poking and asking questions, I had to admit in front of him some more of the symptoms. I purposefully didn't tell him some of them, because he worries...so I got in major trouble!
Pooh.. I have a feeling that you will handle anything thrown your way. The most important thing to me would be finding out exactly what is going on, you can't combat an unknown enemy.
You complaint of hip pain may be the results of wild weekend mornings.. so they might rule that problem out.
Of course our thought, hopes, love, and fears are with you.. every step of the way... anything we can do name it..
Quote from: Pooh on February 06, 2011, 02:11:01 PM
Thanks guys. I am not going to lie, I am scared. I will deal with it and do what I must, but scared none the less. Want to hear the worst part of my fear? I hate to throw up! I mean...hate it with a passion. I know its not funny, but part of me is like, so that's what you are dreading? That's sooo sad. And just so you guys know, DH and I had our first kind-of fight because I withheld information from him. He showed up for my Doc's appointment (I wasn't expecting him to be there) and when my Doc started poking and asking questions, I had to admit in front of him some more of the symptoms. I purposefully didn't tell him some of them, because he worries...so I got in major trouble!
As well you should have been in trouble.. he can't help you if you aren't upfront and honest... don't do that again Pooh
Yeah, I know. In my defense, he takes my pain hard. He hates it with a passion and I have developed what they call "hot spots". Basically, at any time you can touch me somewhere, just innocently on the arm and you will hit one of those and it hurts like the dickens for a second. He is always touching me...just holding my hand, stroking my arm and stuff. So I know him well enough to know if he knew it hurt sometimes, he would quit.
I have told him all my major stuff, just a couple of little things like that to hold down on his worrying. But when they said I had a mild fever, I mentioned, you know...I have been feeling like I have ran one off and on for the last couple of months. Yeah, I didn't tell him that either, cause it comes and goes and I figured it was nothing.
So I did make a promise to tell him everything now, even if it was something I didn't think was important.
And thank you all for the well wishes. I will let you know what happens this week.
We're walking the walk, Pooh! Sending love...
Sending Love, Hugs, Prayers, and good thoughts your way...Remember you are also a WWU Warrior!!!!!!
Faith
Sending all good wishes, Pooh.
I don't know if this will help but I interned in a chiro's office for a while and there was a patient with lupus who felt it really helped her. I don't know any details but maybe?
Pooh, we're thinking of you and sending all good thoughts your way. I understand why you didn't tell DH everything - who wants to be seen as an invalid by their spouse? But I think he has let you know he doesn't see it that way and wants to be informed. You've got a keeper there, Pooh.
Pooh,
It also occured to me that there is a patient with Lupus at my chiro office as well (thanks, Pam)...she said it has helped her. My mom is a massage therapist, and a lot of her clients have lupus as well. Would muscle stimulation help?
Hi Pooh,
Just wanted to know I am wishing you well, will say a prayer for you. I am always amazed in your posts how upbeat and positive you sound, and I am sure you will do well. Best wishes...Jill
:):):):)
You guys are the best! Thank you.
Holli and Pam, I am not sure about the chiro (I do believe in them). They haven't mentioned that, but of course they are still trying to figure out if it is 100% Lupus. There are 2 blood markers that guarantee it is, one shows up in 97% of lupus patients, one shows up in 30%. So if you have both, it's a definate. If you don't, then only a Rheumatologist can offically give a diagnosis of Lupus, based on symptoms, blood and other things. I am throwing the first marker, but not the second, which he says is common. But I now have about 8 of the big 10 symptoms.
I don't know about the chiro, but I could definately see the massage therapist helping as my muscles spasm and tighten up. All my scans show my neck and back in alignment with just normal (cough cough) aging. The 6 weeks of physical therapy he sent me to a few months ago, to try and help the shoulder and arm, the girls ended up just doing massage and the tens machine because my muscles were so tight I couldn't do many of the exercises. It helped bunches just relaxing the muscles. I am on a daily muscle relaxer...Lol...and I am such a weenie when it comes to medicine, I take it before bed and sleep through the fog. (Everything puts me to sleep).
I'm sending you my best wishes, my finest prayers, and my fervent hopes. May your body improve and may you maintain your exceptionally generous spirit. We want to have you around us always, because we love to read your thoughts and laugh at your stories and jokes.
seasage
Thank you seasage. I truly, truly appreciate it.
We are in you corner rooting for yo 100%! Sending love...
I know I'm a newbie here Pooh ,but I always imagine you like your icon ...a huggable bear !
You have been really kind to me and I'm sorry for your troubles .
I receive acupuncture for my muscles every week and it helps them from becoming like rocks.
I have arthritis of the spine and all that goes with it .
Don't despair till you have the full story ....and let your DH in ,he loves you .
Sending healing thoughts across the miles ..x
Pooh,
I'll be keeping you in my prayers. I know this is scary.
One of my best friends has lupus and she has lived quite normal
life, but she takes meds and swims as exercise and has to carry a back jack around
to support her back when she goes to events. I'm wishing you all
the best
Sending love
Thanks Luise. No call yet to schedule everything, but I figured I wouldn't hear from them til later in the week.
LL, thank you. I am still holding out hope that the new doc will go, "Nah, you simply have this and we will fix it." Now I have to ask. Does acupuncture hurt? I can't wrap my brain around being stuck over and over.
Thank you Tara. Whats a back jack?
Pooh;
Acupuncture doesnt hurt a jolt !
they use very fine needles ,and my muscles are sore anyway so you don't feel them going in .
It stimulates the the natural pain killers in your muscles and helps them relax .
I hate popping pills so this kinda stops you having to take so many .
I have it every week ,and know when I miss a session .
A weekly massage would help too .
Fingers crossed for good news ..
Thank you. I am not a fan of needles and the only experience I have is when they did an electrical test on my nerves and poked me over and over...and dang it...that hurt! Lol.
I am very lucky to have a DH that gives me nightly massages to help, but I am thinking a weekly one from a professional might help bunches.
I love acupuncture for my thyroid/arthritis symptoms. My acupuncturist also massages a bit after the session. Aaahhh....
My DH will massage me if I ask, but it's perfunctory and thus not very effective. You do whatever it takes to hang on to that man of yours, Pooh! I hope he doesn't feel like he's not appreciated if you start seeing a pro masseuse.
I will Pen...I'll just take him with me and get him one too ;D
Great idea! Your DH sounds more amazing with every post, BTW. My DH would rather stick acupuncture needles in his eye than get a massage.
I'd love just once getting a massage that didn't have to end up with sex. The thought of just paying for the massage with cash isn't all that bad is it?
Trying to remember, trying to remember trying to remem....zzzzzzzzzzzzzzzzzzzzzzzzzzzzz
Quote from: luise.volta on February 08, 2011, 08:15:31 AM
Trying to remember, trying to remember trying to remem....zzzzzzzzzzzzzzzzzzzzzzzzzzzzz
funny ;D
Pooh,
the "back jack" my friend schleps around who has lupus is a back support device. She has it in her car and takes it anywhere to help
with her back issues, which I assume to some degree are related to the Lupus. Also, she found out that she is very allergic
to gluten in a serious way. Not sure if she is celiac. That seems to have made a significant difference for her. But every on
is different. Here is an interesting link: http://bastyrcenter.org/content/view/703/
There is a good book called the autoimmune epidemic which I bought on amazon after hearing about it through some complementary medicine providers. . I have Hashimotos Thryoiditis which is autoimmune. Lupus is autoimmune as well.
That was an interesting article Tara. I don't each much gluton, but I do some. I don't have back issues although I have talked to a couple of people that have Lupus, and they are having major back issues. But something to remember. If anything comes back and I do have anything relating to the autoimmune area, I will check that book out too. Thank you.
They just called me and I am going in a couple of hours for the Thyroid scan, so baby steps, we shall see if we can rule that one out.
Quote from: Laurie on February 08, 2011, 08:05:34 AM
I'd love just once getting a massage that didn't have to end up with sex. The thought of just paying for the massage with cash isn't all that bad is it?
Ha ha ha...ok, sometimes mine does lead to that, but not every time. Most of the time he is just being sweet. I can not say enough good things about my DH, I truly can't. He truly is a prince and one in a million. As opposed to I can't say enough bad things about my Ex! Lol.
WAKE UP LUISE!!!!!
Quote from: Tara on February 08, 2011, 08:55:57 AM
....There is a good book called the autoimmune epidemic which I bought on amazon after hearing about it through some complementary medicine providers. . I have Hashimotos Thryoiditis which is autoimmune. Lupus is autoimmune as well.
I'm Hashi's too. I find being gluten-free helps, but it's a day-to-day wild ride for me.
Bless your hearts, both of you dealing with that. I'm so sorry.
Pen,
thats interesting. I've had hashimotos for a long time.
Generally I'm fine. I recently changed medications and went
to a compounded thryoid and the change was hard, but I'm
adjusted now. I'm making a committment to go completely
off gluten for a year as my antibodies are still really high and
there is some thought that it is gluten related according to the
functional medicine docs. My brother went off gluten for a
year so I figured this would be a good way to get and give support
to do it.
I ate alot of delicious chapatis in India. Now back on the wagon.
8)
It's not as hard these days to give up gluten. There are many more palatable products on the market now for those times when you must have a yummy. Tinkyada pastas are really good and Udi's baked items are also tasty.
Thats right Pen. We don't have Udi's in our area.
Well that was easy...scan done and they went ahead and took the blood panel too why I was there. So now, the waiting game...Lol.
Waiting to hear some news. The waiting part is the hardest! My thoughts are with you!
Keeping my fingers crossed, Pooh, and sending you my best vibes.
Quote from: Tara on February 08, 2011, 11:16:47 AM
Thats right Pen. We don't have Udi's in our area.
Tara, I may be a carb-enabler for doing this but...Udi's ships!!! http://udisglutenfree.com/products (http://udisglutenfree.com/products)
Penn, those products look pretty tasty! also sugar lower on the ingredients list.
Pooh,
I'm a little late reading your post but wanted to let you that I'm thinking of you and wishing you the best.
Hugs.
Carb. enabler! Now there's one I hadn't heard but I can sure relate. (I just got hand-dipped chocolate-covered cashews for Valentine's Day! Lordy!!
Pooh
I have been out of this site because of computer problems. Now that I read what your going through....I feel sad but at the same time I am confident that you will be fine. I will keep you in my prayers. I am falling in love with your husband... he is really sweet with you. Count your blessings.
Love you Pooh
Yeah, I think we're all crushing on Pooh's DH a little bit :-*
Dear Pooh
your in my thoughts and prayers....do you know it's real important for you to stay out of the sun, and wear long sleeves and a large brimmed hat when you do venture outside?
I don't know why, but I had a friend who had Lupus and that was one thing I remember that she had to do.
love and hugs
Creme
Thank you Barbie, Holli, everybody! Your good wishes do lift my spirits. Nana, Thank you. I so miss your always heartwarming posts and yes he is a keeper and I am very lucky.
Pen, you all can crush on him as much as you want. He is much deserving of all the love he can get! ;D
Thanks Creme. Lucky for me, if it does turn out to be Lupus, that will not be a change for me. I have to take all those precautions anyway, as this Snow White will sunburn after 15 minutes anyway. Now the hat thing may be a problem....I hate hats and look terrible in them! ;D
So my phone rings this morning and it's the Doctor's office. My immediate reaction was, "Uh oh, this can't be good for them to already be calling." Seems I have a nodule on my left lower lobe. And the right side...oh you guys will love this....is, I quote "The Upper Limit of Normal" . Ha ha ha....Ok, it's not funny....but seriously.... Anyway, he says that means it is not normal but nothing glaring out to say "abnormal". Ha ha ha....Ok, still not funny but can radiologists not talk normal instead of abnormal?
So, he is referring me to a surgeon to see if they will do a "Aspirating Biopsy". They really need to stop using big words with me. Just tell me they are going to stick a big ole' honking needle in my neck and see if they can get fluid. He said it is small, but with everything going on, he would like to play it safe and check it. I will also now have to do scans every 3 months to watch everything. They will not have the bloodwork back for a few more days.
So, back to the waiting game. I am now waiting for a call on the Rheumatologist, and now a Surgeon. Shoot me...just shoot me now....
Ok Pooh if that is what you want... bang... now I have first dibs on that husband
I hope you can deal with him breaking out into the "Running Man" right in the middle of the mall.......
does he do the escalator spin?
He has not tried it yet, but I am sure it is coming. He does not care what people think of him...at my work Christmas party, he entertained everyone by breaking out on the dance floor into the sprinkler, MC Hammer time, Thriller, you name it...he was doing it...all from the 80's. And we will not even go into his Karaoke fetish. I am telling you, he does not care where he is...he will do something.
Quote from: Pooh on February 09, 2011, 07:07:56 AM
Thank you Barbie, Holli, everybody! Your good wishes do lift my spirits. Nana, Thank you. I so miss your always heartwarming posts and yes he is a keeper and I am very lucky.
Pen, you all can crush on him as much as you want. He is much deserving of all the love he can get! ;D
Thanks Creme. Lucky for me, if it does turn out to be Lupus, that will not be a change for me. I have to take all those precautions anyway, as this Snow White will sunburn after 15 minutes anyway. Now the hat thing may be a problem....I hate hats and look terrible in them! ;D
So my phone rings this morning and it's the Doctor's office. My immediate reaction was, "Uh oh, this can't be good for them to already be calling." Seems I have a nodule on my left lower lobe. And the right side...oh you guys will love this....is, I quote "The Upper Limit of Normal" . Ha ha ha....Ok, it's not funny....but seriously.... Anyway, he says that means it is not normal but nothing glaring out to say "abnormal". Ha ha ha....Ok, still not funny but can radiologists not talk normal instead of abnormal?
So, he is referring me to a surgeon to see if they will do a "Aspirating Biopsy". They really need to stop using big words with me. Just tell me they are going to stick a big ole' honking needle in my neck and see if they can get fluid. He said it is small, but with everything going on, he would like to play it safe and check it. I will also now have to do scans every 3 months to watch everything. They will not have the bloodwork back for a few more days.
So, back to the waiting game. I am now waiting for a call on the Rheumatologist, and now a Surgeon. Shoot me...just shoot me now....
Oh Pooh....and I don't mean you.....you were never normal anyway, you'd have to be a little abnormal to be hobknobbing with us, so, cheer up....
and no, I won't shoot you, none of us will....because we'd miss you terribly, so you lucked out....
huggies to ya hun...we love you whole bunches....
Creme
Pooh,
I had a needle aspiration biopsy of my thryoid as I have nodeles/ or have had and I was surprised that it wasn't
really painful or a big deal, I expected it to be more difficult. Also, 10% of women in this country are hypothryoid
so if it turns out to be that, its very treatable. Thinking positive thoughts for you Pooh.
Pooh... I just tried to learn the running man.. needless to say.. I disarmed my weapon.. he's all yours
Thanks Tara, that helps to know it wasn't that bad.
Lol Laurie! I can't do it either.....
They called. I am seeing the ENT surgeon in the morning.
Quote from: Pooh on February 09, 2011, 01:43:02 PM
They called. I am seeing the ENT surgeon in the morning.
Hey at least they are not stringing this out for days... let us know if you need anything after your appt..
Sending love...
Try to get some rest...I am thinking about you.
I'll be thinking of you too. If you can, take a moment at a time. Even during the procedure, one second at a time and
keep breathing.
Every cloud has a silver lining .....hope yours is shining....keep smiling Pooh...x
Didn't do the biopsy. He said it was very small and he wants me to have another scan in 4 months and just monitor it for awhile. If it gets any bigger, then they will do it. He said my thyroid glands are a little on the big side, but with nothing to compare it to prior, will have to wait and get additional scans to see if its enlarging or just normal for me. He said when we get the blood work results and if I am having problems, the medicine will more than likely shrink the nodule and glands anyway. So just going to monitor it for now and wait on the blood work. Yay!
He said I definately needed to be with a Rheumatologist because my arm would drive them batty! Lol. WWU Warriors Rock!
At this moment things are looking a little more stable.. hope this helps to keep from over fearing the unknown.... Still if there is anything you need.. we're still here
Sounds like good news to me...
We do rock! We were/are were with you every moment! Sending love...
Hey, thats good news Pooh. I'm glad for you
Good news, Pooh. Thanks for letting us know. Yay!
Whew, Pooh, thanks so much for keeping us abreast....we love you and are rootin for you....
You Rock!!!!
Update: I had my follow-up to get all the test results yesterday. All my bloodwork is fine. No thyroid problems and estrogen is normal. So cross two more off the list. So good news that I don't have all kinds of stuff going on, but he said that just makes him more than ever believe it's lupus. He was also a little upset that the Rheumo office had not called me yet to schedule, so he was going to have his Nurse call today and nudge them along.
So down to waiting on the Rheumo.
Pooh! I'm glad he said there is not all kinds of stuff going on. I hope the Rheumo office calls soon!
Good Pooh...so happy for you. Hope everything will turn out fine. We are all here for you.
Love you Pooh
Thanks guys! Although I am not thrilled about it possibly being lupus, it is a relief to know that I don't have multiple issues going on. So yes, good news.
Yeah Pooh !! Rooting for you ..... ;D
Glad to hear your good news, Pooh!
We are walking the walk with you, Pooh. I agree that they are ruling out some things that you would rather have it be. Keep us posted. Sending love...
women are warriors ...you have climbed every mountain set in front of you so far! you will beat it or control it so your in charge . strength is something you have. failure is not in falling down its in not getting back up :P
I am so sorry for this issue you are facing, how scary it must be for you. I also have a friend with Lupus and she is a nurse. The other posters mentioned massage and chiropractic care, I was told it was helpful too. It sounds like your husband is a sweet and caring man, how great you have him to support you right now. Blessings to you. Take care.
I honestly don't know much about Lupus and the differing types. I'm a nurse but I went through training in the 1940s. Do they have any explicit data yet on what you may be facing? In the meantime I am sending generic juju...with love.
Pooh,
Hope you can take a day at a time.
If you do have lupus, early intervention is good and there are more ways to manage it than in the past, so that is
hopeful.
Pooh,
Sorry for the late post - I just saw this thread. I am praying for you and hoping for the best. I can imagine how scary it must be, but it's comforting to know that new treatments are being discovered all the time. You are a sweetie and I don't want to see you suffer. There is power in love. Do you feel it from all of us?
Hugs, Hope
Quote from: luise.volta on March 05, 2011, 10:46:35 AM
I honestly don't know much about Lupus and the differing types. I'm a nurse but I went through training in the 1940s. Do they have any explicit data yet on what you may be facing? In the meantime I am sending generic juju...with love.
Thank you everyone for your support. It means so much to have you all in my corner.
Luise, my MD has been very helpful in explaining things to me. If the Rheumo decides it's Lupus, there are several different treatment options depending on the "aggressiveness" of the Lupus. The disease goes from mild forms to severe forms. The mild forms are usually just treated with anti-inflammatories and things to concentrate on the pain and immune system. More severe forms they treat with medicines to quickly suppress your immune system like anti-malaria drugs.
Lupus makes your body over produce antibodies. My MD got me tickled with his analogy. He said the your antibodies are your army men. So when something attacks your body (like a virus or infection) they spring to action and go into war. When the war is over, they retreat back into their barracks. He said in Lupus, your Army is huge and they want to fight all the time. So when you don't give them an enemy, they get bored and decide to attack your healthy tissue. If you don't give them something to fight, they create their own battles....Lol...isn't that a cute way to describe it. My stupid Army men refuse to go back to their barracks.
If you have a mild form, they will attack muscle and tissue, causing pain and inflammation. If you have a severe form, it attacks your organs, which is when it's bad. But in every case, they have medication to deal with it. The are other things it causes like a face rash, mouth sores, extreme fatigue (stupid Army), headaches, anemia, swelling, heart inflammation, etc. But all of them except the rash are related to the overproduction of antibodies. Get a handle on that, most of the symptoms are controllable and it more resembles RA.
If I have it, we want it to be mild to semi-aggressive. The aggressive kind they have to use chemo drugs on you to suppress your immune system and the MD says they are no fun. But the good news is years ago, it was fatal because they didn't know how to stop it from attacking your organs eventually, now they do and it is no longer considered fatal as long as you treat it. The only cases of fatality now are those that do not get it diagnosed or do anything about it because they normally end up with heart or kidney failure.
Crossing my fingers, eyes and ankles! :o Sending love...
Yes, fingers crossed and best of wishes for your good health Pooh