View Full Version : newbie and confused
01-30-2009, 06:11 PM
Hi everyone! I'm new at this whole forum thing so please have patience with me.lol I've been reading your posts on and off for a while now and I finally decided to share my story because i feel so alone and confused quite often these days. My name is Jeannette and i'm a 36 yr old wife and mother of 2. I started feeling arthritis symptoms about 10yrs ago,so bad that i couldn't hold my mascara tube! My husband took me to the Dr. who told me i must have caught something airborn. It subsided over time until 3 yrs ago when it came back along with many other symptoms. I thought i was going CRAZY because i was weak,tired,joints hurt,muscles hurt,nausea,headaches(migrains),dizzy spells,severe nosebleeds,ringing in ears,memory loss,cant focus,hard to breath at times,hoars voice,hard to swallow,swollen lymph nodes,sensitivity to light........My husband and i found out that the gym we were at had covered up mold with a new floor,my doctor said well theres your problem. I havnt been there in 2 yrs but my symptoms have gotten WORSE. I've been to my doctor so much that she rolls her eyes when she sees me. She tells me i'm to young and healthy to have anything seriously wrong with me.I thought i was losing my mind and my husband continued to worry about me. I charted when my symptoms hit,went back to her,she did some blood tests,rolled her eyes again telling me its in my head! I reminded her of a low white blood cell count that showed up previously along with bad nose bleeds and other bleeding,she says i never told her that and she doesnt recall the low white blood cell count. She opens her chart and says "sorry,omg,you're right,that's not normal". Now she says if it will make me feel better she'll send me to a couple specialists. Slight deterioration around my joints in my fingers,the rheumatologist rolled his eyes when he saw my charted symptoms,he says im young and healthy and "look at you,you look good". If one more doctor says that i'll scream! I dont feel good,and believe me i'm not one to complain,that's why this is soooo long. lol I do feel lucky though cuz my husband has been GREAT through this,he's the one who's made me push things with the dr.I'm used to taking care of everyone else so i let this go for a while and now i flare BAD. The sun really makes my symptoms bad. I have an MRI of my brain on Mon. but i've had so many tests i'm scared this will show up nothing once again. My doctor is annoyed w me and i feel alone in the medical world of doctors! Thanks for listening to my ramble,my friends look at me like the doctors do,"well,you look ok and you eat right and exercise,there's nothing wrong with you".I dont even talk to them much anymore cuz it makes me feel worse,thank gosh for my husband at least!
01-30-2009, 06:23 PM
Gentle hugs to ya lucky7
Glad you found us, and glad you decided to post.
We've all had our fair share of "but you look great"
To make matters worse, I have a rheumy who believes that lupus is just a catch phrase that doctors use when they dont know what's wrong with you....I pointed out to her that she has not found out what's wrong with me either...she didn't like that too much...HA!
I've had possitive and negative and boarderline ANA tests. I have facial rashes, sensativity to sunlight, headaches, joint issues, digestive issues..and on and on and on.
Coming here has been a huge support to me. Gives me the courage to go back and face my rheumy for the next battle.
It's because of this board that she finally tried me on plaquenil which has helped me alot.
Good luck with your upcoming MRI. Let us know how it turns out.
01-30-2009, 06:34 PM
Awwww,thank you soooo much for that! It feels good to hear someone who understands and believes me instead of looking at me like "oh no,it's you again"! My neurologist is the one dr who hasnt rolled his eyes,yet! lol He tells me he KNOWS somethings not right,that gives me some hope! I'll let ya know what happens next! THANKS AGAIN!
01-30-2009, 06:44 PM
I'm very glad to hear you have someone in your corner. My family doctor is my main support.
It took some convincing and her finding a lost blood test that actually came back with a possitive ANA to get her in my corner. But she's been great ever since.
I hope you get the answers you need soon. :)
01-30-2009, 07:02 PM
Hello and Welcome Lucky 7,
Your avatar is soooo sweet. :)
Sorry you're getting the run around with the docs...dealing with the friends that aren't really being friends...and that you're suffering with all these symptoms. Gentle hugs to you.
You have the added challenge of being a mom to two children who rely on you. That can be so overwhelming, to have to continue to meet their needs when you feel awful and can barely meet your own. Seems like if your friends were really friends they would offer to come over and help you out by watching the kids and letting you rest.....instead of saying you don't look sick. Why do we have to look sick in order for people to believe us. I wonder sometimes, would people say that to someone that had a mental illness?
You are very fortunate to have your husband for a strong support. That is huge! I've had Lupus for 27 years and my husband is my rock. He has been there for everything and is my #1 advocate. He never ever let me go to the emergency room without him to be there and speak up for me. He has held my hand through the most horrible of tests, carried me up stairs when I couldn't walk, and has never ever let me down when I need a big, strong, comforting hug.
Hang in there.....don't give up your fight to get the medical care and treatment that you deserve and are entitled to. And don't think a thing about any doctor that rolls their eyes at you or doesn't believe. Try rolling you eyes back at them, and say, 'yeah, I feel the same way about you'.
I'll say a prayer for your MRI, and please let us know how things turn out. This is a safe place to come and share anything you need to.
01-30-2009, 07:15 PM
You should tell those eye rollers...Didn't your Mum tell you if you do that, your eyes might stay like that?...then poke 'em out if they aren't going to use them right. In my family we consider that rude...
Are they treating any of your symptoms?
Have you ever been tested for Sjogrens Syndrome..typical signs and symptoms include but not limited to...
The mouth normally contains saliva, which aids chewing and swallowing. In people with Sjogren's syndrome, the amount of saliva is much less. This makes chewing, swallowing, and speaking difficult. It may also cause a decreased sense of taste.
Your eyes may feel dry, "gritty," or "sandy." They may burn and look red. A thick substance may accumulate in the inner corner of your eyes while you sleep. Your eyes may be more sensitive to sunlight. If not properly treated, Sjogren's syndrome can lead to ulcers of the cornea (the clear covering of the eyeball). On rare occasions, this can cause blindness.
Swollen salivary glands
There are three set of glands that produce saliva. They're located under your tongue, in the cheeks in front of your ears, and in the back of your mouth. They may feel swollen and tender. This may occur along with a fever. This affects about one-half of people with the disorder.
This is a common problem that results from a dry mouth. Saliva fights bacteria and defends against cavities. Because you have decreased saliva, your teeth may develop cavities more easily.
Dry nose, throat, and lungs
This may make your throat feel dry and tickly. You may have a dry cough, hoarseness, a decreased sense of smell, and nosebleeds. It can also lead to pneumonia, bronchitis, and ear problems.
Dryness of the vagina
This can cause painful intercourse for women with Sjogren's syndrome.
Fatigue is a common complaint. You may get easily exhausted and feel tired and worn out.
Sjogren's syndrome can affect other parts of the body, such as blood vessels, the nervous system, muscles, skin, and other organs. This can lead to muscle weakness, confusion and memory problems, dry skin, and feelings of numbness and tingling.
* Joint pain, swelling and stiffness
If not tested, ask for these...Tests for specific blood markers can determine if you have Sjogren's syndrome. However, not everyone with Sjogren's has these markers.
* SS-A antibody blood test - also called SS-Ro
* SS-B antibodies - also called SS-La
* Antinuclear antibodies (ANAs)
* Antithyroid antibody blood test
* Immunoglobulins blood test
* Gamma globulins blood test
* Cryoglobulin test
* Chest x ray
* Kidney urine tests
Keep educating yourself...so they next time when they say, your too young, healthy..you look great, you can roll your eyes and explain to them your symptoms and your conclusion...
Enjoy the night..
01-30-2009, 07:18 PM
thought I better answer to your post too....
01-30-2009, 07:19 PM
Thank You soooo much Lori,it means alot to hear those kind words from you.
Yes,its tireing,and there are days i do wish a friend would offer some sort of support. My husband tells me im there too much taking care of them and there problems that they dont know how to be there for me. Oh well,maybe i need to make new friends i guess! lol
I find alot of peace with my pets and nature,that helps at times. There are just those times i want to cry(sometimes i do!) because i feel so tired. Im glad you understand,it feels good :cry:
Im happy you have had a supportive husband through your illness, it deffinately helps.
Thank you again for your understanding and kind words!
01-30-2009, 07:25 PM
yeh lupus ain't great....
Specially because u don't look to sick most of the time..
But Lucky chin up and all will be ok....
Glad u have a good hubby for support...
and it seems that u/ we might find some support here too.... :D
01-30-2009, 07:30 PM
Hi oluwa! Thanks for your reply!
No,no treatments,just a muscle relaxer to help me sleep better at night.
My doctor has told me my last visit that"Jeannette,theres nothing wrong with you,its stress and the rest is in your head"! "You need to destress and you'll be fine". I wish that were the case!
So she hasnt done many tests, anemia,diabetes,thyroid, a low white blood cell count showed up 2 times but she said i must have been sick those 2 times! I wasnt though!
Still seeing specialists,i think my charts read "annoying" or something because when my chart got sent to a specialist all of a sudden he sends me away without further testing saying "im young and i look healthy". AHHHHHHHHH! I dont want to hear that anymore
01-30-2009, 07:36 PM
By the way Lori you made me smile about my avatar! I love dogs!
Aluwa, i forgot to mention that when i last went in i asked if she could do specific blood work and she got offended telling me that she knows what she needs to do!
I left without the tests needless to say.
My husband says i need to find a new dr but i feel lost on where to go cuz of my experiences w so many others
01-30-2009, 07:54 PM
You're welcome...You have to be your own advocate. Insist, or ensure you bring someone with you for support and their insistence at your next appointment. Insist on these test that are listed about this forum to be conducted....
Remember, you hired them for your care...through insurance premiums, coinsurance and copay...or through other benefits. Doesn't matter..your body, your tests...
Worry not about offending a doctor...if they offend easily, then seek out another until you find one who listens, who cares the way you need. Just look in the yellow pages, ask friends, ask your GYN, ask at the nearby hospital for a doctor, Rheumatologist. Call up your insurance and ask for a provider name...
Keep plucking, we know how you feel...many of us have been there. You just have to pick yourself up and have a go at it again. Prevention, early detection and treating any disease early is important...
Enjoy the night.
01-30-2009, 08:00 PM
well said that Oluwa
01-30-2009, 08:18 PM
Thank you, yes i still keep weeding out the bad,before i registered w your forum i printed out some info on some doctors at our university medical center. Im calling on monday! woo hoo! Im gonna keep on trying cuz i have to admit i get pretty scared when i cant breath and i can barely keep my eyes open etc.........
I do usually go to my appts. alone though,i do feel the need for backup sometimes,im just so used to taking care of things that need to be done on my own. lol Its called being a wife,mother,and caretaker to ill parents!
I will take your advice & talk to the hubby about him joining me!
Thanks so much,i havent felt so happy to talk to people about my issues before!
Gotta go, up early for sports activities for one of my babies! :D
The hardest thing for me to overcome was the feeling that you shouldnít question your doctor. Now that seems like thatís all I do! Doctors have to balance keeping the insurance companies happy and making sure patients are taken care of. If a doctor isnít taking your symptoms seriously, then you have to find one that will and thatís no small feat. You may have to go through several. Don't feel bad for changing doctors. It is your health, not your doctors.
01-31-2009, 01:24 PM
Thanks, Lucky 7.....
I love dogs as well. :D I've got a 6 year old Golden Retriever named Cooper. He is the sweetest dog ever.
I know he thinks I'm his adopted 'Mom', whenever I sit down for even a second, he's right there, leaning against my legs and waiting for a doggy backrub.
Dogs are great cuz they're so non-judgemental, unlike some humans. Mine seems to know when I'm down or moving a little slowly that day....he'll lay his head on my lap and nuzzle my hand.
Enjoy your day, all............
02-02-2009, 04:55 PM
Hi Bama! Just jumped online while i had a few seconds to myself! lol Boy is it the truth about doctors!
I was in a waiting room once and a cute little old man next to me said "boy its like a revolving door around here isnt it?" SOOOO TRUE!
And you're right about questioning my dr. I didnt do it for the longest time until my symptoms got so bad it affected my whole family. I just took her word for it because i thought,well shes the dr.
Not anymore. I know my own body and its screaming somethings wrong and its only getting worse, which really frightens me.
Thanks for the advice, this site is really giving me some strength! i read your posts for a long time and i feel so good having registered now! Thanks! I dont feel so alone! :olympic:
02-02-2009, 05:03 PM
Hi Lori! Just wanted to say I have a 8yr old golden and an 11yr old lab mix we saved from the pound when she was 3 months old!
Thats funny what you said about animals! I tell my husband that all the time! Thats why i get serenity from my backyard animals and my doggies!
Thy're there for you whenever you need them. as i get older i realize i'd rather be with my animals than around people! People seem so angry and judgemental more than ever these days. We live in a very selfish and self centered world sadly enough.
I find myself appreciating the simple and the small things around me. I know my illness has magnified that but i've always tried to be that way.
I appreciate your comments,they make me smile! :D
02-02-2009, 05:08 PM
Oooops! I wanted to comment on what you said about how your golden acts when you feel ill Lori.
They are so intuitive arent they! mine do the same! its amazing how they sense your illness and/or emotions.
They're our babies!