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Thread: New here and newly diagnosed

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    Default New here and newly diagnosed

    Hello Everyone!

    I am looking forward too "meeting" others in this forum.

    I was diagnosed a month ago and I think I am dealing well with things. It is so nice to know that it "isn't all in my head" and that I "am not just lazy".

    I know I like to read others stories, so here is mine.

    About 10 years ago, I developed what I thought was a sun allergy. I also had a facial rash, digestive issues and an allergic reaction to medication all in the same summer. I was a student at the time and the clinic doctors either explained away each individual symptom or sent me to different doctors so the issues were dealt with in isolation. About 7 years ago I was told I had mono (which I now know was likely a false positive). I was extremely fatigued and had to think about getting up to say go to the bathroom for about 20 min before I could actually get my body to do it. Interestingly I have felt the exact same way at least 7 times since then (for months at a time). In the last five years, I have had two miscarriages and then with the help of an understanding doctor who let me try taking aspirin and prometrium saying they couldn't hurt, I gave birth to a son. His birth signalled the increasing severity of my symptoms. I have had even greater fatigue and lethargy to the point where I asked if I might have PPD when he was 9 months old. I have mouth ulcers, strange rashes, almost daily migraines, aches and pains like I had a fever even though I didn't, stiff joints, etc. I have also had low WBC count and at least one incidence of protein in my urine. Thankfully last summer a family physician put two and two together. She sent me for a series of blood tests "just to rule out anything auto-immune, like lupus" before she sent me to an allergist for my sun allergy.

    Turns out lupus wasn't ruled out. It took more than six months to see a rheumatologist and he diagnosed me on my first visit, thanks in part to the many, many blood tests my doctor had ordered prior to referral.

    I am now taking plaquinil and another drug that is supposed to decrease my migraines. The frequency of headaches has already decreased. I feel lucky to have a diagnoses while my symptoms are more troublesome than dangerous.

    For now, I am hoping to look at this like being diagnosed with diabetes. If not monitored and if not taking the required medication, then the possible consequences are pretty scary....but if I do what doctors tell me, take precautions and report any new symptoms, it is my hope that any scary things can be caught early enough to be dealt with.

    I am most scared that I have passed this on to my son or even someday to his children. For that reason, I am taking back some power and will be participating in a lupus fundraiser soon. I have also decided not to hide my condition. I am lucky to be in a position professionally where it can not be used against me...so I think I am a good person to raise awareness. I didn't have a clue what lupus was before its possibility was mentioned to me by my doctor...I would like others to know about it. I am thankful to have lupus now with all of the prevention that is now in place instead of 50 years ago when I understand it was a completely different story.

    I look forward to a time when I don't use up all of my energy at work and I have something left for my husband, my son and my family. I am hoping that plaquinil will help me get there. I look forward to meeting others who are knowledgeable about the many hurdles, I am sure we will encouter on this journey through living with lupus.

    Thank you.
    Bunny

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    Hi Bunny;
    Welcome to our family. I am so glad that you are here I am also glad to hear that you had a thorough doctor who ran the appropriate tests which, in turn, allowed your rheumatologist to make a quick and definite diagnosis with immediate treatment. As such, you may be right in the hope that taking immediate action (lifestyle changes, appropriate precautions, good medical care, etc.) will allow you to manage your Lupus and maintain a relatively normal lifestyle.
    It sounds as if you've done (and continue to do) research about the disease and that you are dedicated to learning, as well as teaching others, about the disease. I am happy to hear that you've decided to be open about your Lupus in order to spread awareness. That is a very noble and brave thing for you to do and I want to thank you personally for doing so.
    A word about the Plaquenil, please know that this medication is cumulative and, as such, can take several months before you see any significant improvements. However, once it does start working, most find that it works well for them. If you and your doctor do not feel that you are improving enough on the Plaquenil alone, you can discuss the possiblity of adding Prednisone or one of the several immunosuppressant drugs used to suppress the over-active immune system that is the primary issue with this disease.
    With reference to your children inheriting this disease. There are some studies that have shown that the disease can be genetic. However, it is not felt that it is heriditary. But, this particular study continues as there are no concrete answers in either regard. So, do keep an eye on your children, for any type of auto-immune issue..not just Lupus (children may develop RA, Rheumatic Fever, or any of a long list of auto-immune disorders (I've just placed a sticky in "Symptoms" listing 63 AI disorders).
    Again..we are so glad that you are here and we are here to help you in any way that we can. Welcome to our family..again

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Wow, the mouth sores are so bad can't even tell me I too have to really put thought into moving I told the dr that and was to get over myself it's a choice but I so understand I feel awful most of the time just want energy to move about, seems like such a small thing to want

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    Hi again Bunny! I know we spoke a bit in chat but it is great to get an idea of what is going on with you. Susie is right, don't be scared of the plaq. We take low enough doses that we don't often see the side effects. Just to ease your mind you do want to get an eye test now and then every year. You need to tell the eye doctor that you are on plaq. so they give you the complete test. This way you have a baseline test to compare latter ones to.

    So glad to have both of you with us!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    welcome bunny to whl i am kiml and i am from sydney australia look forward to chatting to you in future hugs

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    Quote Originally Posted by Nancyhuntress View Post
    Wow, the mouth sores are so bad can't even tell me I too have to really put thought into moving I told the dr that and was to get over myself it's a choice but I so understand I feel awful most of the time just want energy to move about, seems like such a small thing to want
    Nancy - it is a small thing but it matters a great deal. I hope you find a doctor who will listen to all of your complaints and not make you feel like it is in your head.

    Currently I have mouth ulcers again...but luckily they aren't stopping me from eating (yet, this time, lol)

    I am excited for the plaquenil to work

    tgal - thanks for the reminder about the eye doctor. I have been meaning to make an appointment. I will probably forget again tomorrow, lol but now I can see it when I come back to check this thread.

    Saysusie - thank you for all of your wonderful, supportive and calming feedback. I am in a much different place than I was a month ago. For me research or rather knowledge is calming. I am so glad to find somewhere where the power of knowledge is shared.

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    Hello Bunny,
    Welcome to the WHL and the symtoms you was having is what a great many of us have but with the rashes and so on be careful with heat outside because it can cause problems with 10-15mins and 50 block is always recommended and refering your tiedness it takes me nearly 2 full hours to come round in a morning besides other meds besides plaquenil i'm taking.
    I am pleased in one way you was diagnosed to put your mind at rest but not in another concerning having lupus because some days can be a nightmare with the condition.
    I do admire you though for wanting to go ahead and do fundraising for the disease and making it alert, alot of conditions which are seriously bad are not acknowledged enough.

    It's lovely having you here with we and i hope you learn alot from our threads as well all suffer in different ways.

    Terri xxx

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    Hi Bunny,

    Your post was inspiring-made me tear up. Thank you. I look forward to getting to know you. I'm still in diagnostic limbo-my first appt. with rheumy is this afternoon. Like you, symptoms have been creeping up on me for years-and at this point I'm missing work and having a hard time functionning most days. I'm nervous as hell to see this Doctor-hopefully I'll have some good news when I get back. Wish me luck!
    Wendy
    Quote Originally Posted by bunny28 View Post
    Hello Everyone!

    I am looking forward too "meeting" others in this forum.

    I was diagnosed a month ago and I think I am dealing well with things. It is so nice to know that it "isn't all in my head" and that I "am not just lazy".

    I know I like to read others stories, so here is mine.

    About 10 years ago, I developed what I thought was a sun allergy. I also had a facial rash, digestive issues and an allergic reaction to medication all in the same summer. I was a student at the time and the clinic doctors either explained away each individual symptom or sent me to different doctors so the issues were dealt with in isolation. About 7 years ago I was told I had mono (which I now know was likely a false positive). I was extremely fatigued and had to think about getting up to say go to the bathroom for about 20 min before I could actually get my body to do it. Interestingly I have felt the exact same way at least 7 times since then (for months at a time). In the last five years, I have had two miscarriages and then with the help of an understanding doctor who let me try taking aspirin and prometrium saying they couldn't hurt, I gave birth to a son. His birth signalled the increasing severity of my symptoms. I have had even greater fatigue and lethargy to the point where I asked if I might have PPD when he was 9 months old. I have mouth ulcers, strange rashes, almost daily migraines, aches and pains like I had a fever even though I didn't, stiff joints, etc. I have also had low WBC count and at least one incidence of protein in my urine. Thankfully last summer a family physician put two and two together. She sent me for a series of blood tests "just to rule out anything auto-immune, like lupus" before she sent me to an allergist for my sun allergy.

    Turns out lupus wasn't ruled out. It took more than six months to see a rheumatologist and he diagnosed me on my first visit, thanks in part to the many, many blood tests my doctor had ordered prior to referral.

    I am now taking plaquinil and another drug that is supposed to decrease my migraines. The frequency of headaches has already decreased. I feel lucky to have a diagnoses while my symptoms are more troublesome than dangerous.

    For now, I am hoping to look at this like being diagnosed with diabetes. If not monitored and if not taking the required medication, then the possible consequences are pretty scary....but if I do what doctors tell me, take precautions and report any new symptoms, it is my hope that any scary things can be caught early enough to be dealt with.

    I am most scared that I have passed this on to my son or even someday to his children. For that reason, I am taking back some power and will be participating in a lupus fundraiser soon. I have also decided not to hide my condition. I am lucky to be in a position professionally where it can not be used against me...so I think I am a good person to raise awareness. I didn't have a clue what lupus was before its possibility was mentioned to me by my doctor...I would like others to know about it. I am thankful to have lupus now with all of the prevention that is now in place instead of 50 years ago when I understand it was a completely different story.

    I look forward to a time when I don't use up all of my energy at work and I have something left for my husband, my son and my family. I am hoping that plaquinil will help me get there. I look forward to meeting others who are knowledgeable about the many hurdles, I am sure we will encouter on this journey through living with lupus.

    Thank you.
    Bunny

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    Wendy - Thank you for commenting. I hope that you get all the answers you need this afternoon. IF it helps I was terrified to see the rheumi. I even snapped at my husband that morning as I was so on edge. He didn't understand why I was nervous...He kept saying this is a good thing. Honestly, I didn't know what the doctor would say and part of me was terrified, he would tell me it was all in my head and another part of me was scared he would say I had lupus. Huge hugs and courage to you. Good luck today.

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    Morning bunny

    I'm really new to Lupus also and can completely relate to your fears and i am sure we all have had the same thoughts.. Lupus is such a complicated thing with so many strange symptoms. I dont know about you but i really was in fear that i was having a breakdown. My mother suffered from mental illness[ Mostly brought on by Prescription drugs] and that has always been a huge fear of mine. So when i did get a Lupus dx i said out loud that i was so relieved.. Wow my husband went into shock and asked me how i could say such a thing. But it was a relief to know that it was't my mind fabricating all these wierd feelings. Ha, i used to blame it on Menopause and you can only use that one for so long.. I hope you have a wonderful day.

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