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Thread: New guy here, the love of my life has Lupus

  1. #11
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    hi scott and tanya.
    i like quite a few here suffer both lupus and fibro.

    welcome, please ask questions,we will try to help you both learn.

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    there is a thread in this "new members" section, called "what next".
    in that thread i have added some information about fibro that might help.

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    Hi Tanya, I'm so glad you joined us! I have SLE, fibromyalgia, and Hoshimotos thyroiditis. I get so tired I can hardly stand it. I keep wondering how long I can keep working, as I fall asleep at the wheel sometimes. I'm so sorry to hear you are so sick and have been for a long time. I pray you get in quicker and that the doc treats this seriously. We all know how it feels to be treated like we are hypochondriacs or just depressed. I once told one of the docs in the ER, "Ya'll are making me depressed!"

    Read all you can, write every symptom down and keep pictures, records, bloodwork results,etc.

    Again welcome to a great group.

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    Welcome, Tanya! I'm blown away that you can't get SSDI with all that you have going on. I've heard that it's worth the money to get a lawyer who specializes in SSDI. They usually don't get paid unless you get a settlement - and I believe that if that happens, the settlement is retroactive to when you applied, so you do get a lump sum that you can pay the lawyer from. I'm not a lawyer, so don't quote me on that.

    My Dad is a "sunshine and exercise" kind of guy. Once he sent me out to run off a migraine when I was half blind with pain and lights! With him it was definitely denial - it was the only way he could cope. He has improved over the years, but every new health issue in the family gets shrugged off by him at first. If you live in at big city, the Lupus Foundation might give information classes for patients and their families. A little education might help.

    I hope you and Scott continue to participate in this group. After all you have been through, you must have alot of information you can share with us, too.

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    Hi Scott,

    Welcome to WHL and i'm abit slow on replying to your thread about Tanya but it's lovely to know she's now joined.

    I do hope you and Tanya get helped very much from the members as we're all suffering the same in so many ways and your support and love goes along way and wanting the knowledge of what she's going through.

    Hugs to you both Terry xxx
    Last edited by Peridot20_Gem; 06-23-2011 at 10:26 AM.

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    Quote Originally Posted by Tanya's guy View Post
    Thank you for the warm welcome.

    I couldn't agree more on the Type A personality. I tell her over, and over to slow down but she just keeps going until she crashes. Her current doctor is in my opinion is USELESS!!! No prescriptions at all just tells her there is nothing that can be done. REALLY? Nothing? Her new doctor isn't able to see her until Sept. 2nd. My gosh, that's a long ways away. There must be thousands of people with Lupus here in the Sacramento area for it to take 3 months to be seen..... As for support, her family has all but turned their heads and tell her she should exercise more. Yeah like that is what she needs more physical activity. Or the say she should get out in the sun. Well the sun causes itching and rashes on her skin in just a few minutes depending on how hot it is out. She had to cover up her legs in the car the other day because 4 hours of indirect sun caused the rash to appear. I have to support her... I love her more than anything in this world and will never leave her regardless how sick she becomes. (hopefully she gets better )It took me 43 years to find the woman of my dreams and I am not leaving her side. But this disease is SO frustrating..........
    Hi Scott,

    I do respect you in so many ways for standing by the woman you love, as Lupus is such a difficult disease at times and can completley ware you out but you seem so contented in pushing forward with Tanya through thick and thin...well words are speechless. xxxx

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    Hello Tanya,

    It's lovely to have you with us after your (rock) scott posted about you and your situation...good on ya for joining and it will help you so much in learning the condition and what may occur in the future.

    Well in your 3rd and 4th line alone you've been through so much...Lupus causes miscarriages and can even cause a woman not to get pregnant as i'm one on the list and all the rest you've mentioned comes accompanied with Lupus it's such a testing disease.
    Tanya you need to also be seeing a dermo about your skin concerning a flare/flares as steriod based creams are excellent on removing those but once a course as been finished you need at least 6mths break in between each one as they're also an aging cream and they're pushing you for ant-depressents is because if you are depressed Lupus thrieves on it so much and makes you feel your symptoms alot worse.
    The reason for your bloods showing different readings on your ANA and any other bloods you have done is lupus fluctuates your bloods and can give off false readings, so anything showing negative could be actually positive, that's why bloods keep being taken.
    You've gone through alot with surgery's but SLE can cause issues with the organs to the body also, i've just devolped a tumour on my liver and they reckon my immune system wants surpressing bad to slow it down, so with what your going through and the SLE going hypo no wonder you feel like you do.
    Well i do admire you for at least going at different subjects to keep you going but lupus does ware you out and keep on at your rheumo to get an appointment sooner, it's not good enough with how ill you are. My dermo goes mad because my rheumo leaves seeing me for 6-8mths at a time and his words are (does'nt he realize you have sle) lol.
    Yes keep out the sun, unless your covered well and even with sunblock and go in the shade and if you feel the slightest irritation get out of it.

    Well you do have an excellent partner by how you speak and scott does also and that's very important, as we all need someone.

    Please keep we updated Tanya now you've joined also.

    Hugzzzzzzzzz you way Terry xxxx

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    GREAT! Tanya chimed in. I can tell you this I had tears streaming down my face last night as I was reading her post. My GOD, I was crying like a little girl. She hasn't received support like this ever! How wonderful and what a great bunch of folks. I'm sure you will be hearing much, much more from us. In fact, I guarantee it.

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    Hi Tanya! Welcome to WHL! We are so glad that you joined us and we completely understand what you are going through! Although radiation is not a treatment of Lupus Chemo is so we even have an idea about that (not to the extreme that you are though).

    Lupus is a horrible disease. I too can look back to my teen years and see that I had it then. The good news is that there are things that can be done to help make you feel better but, as you know, it doesn't go away. You are not lazy, crazy, whimpy or whatever other name they want to give you. You are sick and you need to learn to slow down. I know how hard that is because it feels like giving up and giving in. That isn't the case. It is simply taking care of yourself so you and your wonderful rock can enjoy more of life.

    Social Security is a nightmare in the states. You can't be working and apply but it takes forever to get. I was one of the lucky ones as it only (yes ONLY) took me a year. I too would suggest an attorney. I tried without it at first but as soon as I hired one I was approved. Someone above me stated about the attorneys not getting pain unless you win. That is true. The law does not allow them to be pain unless you are. I now tell you all of the negative things to tell you that it was the best thing that ever happened to me. I won't bore you with that story right now but if you ever want to discuss it let me know.

    I really am glad that both of you found us. Please make yourself at home here. You are now part of our WHL family and you will never be alone.
    Mari

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

    ~Winston Churchill~







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    Red face Smiles and Warm Feelings!

    Thank you all so much for the warm Welcomes, Hugs and information.

    SSDI is a nightmare and I knew going into it. I applied almost a year ago and yes went through a lawyer however, I am looking to switch attorneys due to he not being proactive on the case either.

    It has been a long hard road and taxing all the way around. I am SO happy to have found this site and all involved. I am looking forward to it as it truly brightened my day today and was somewhat theraputic to write my short versioned story.

    Thank you all again and looking forward to many more!

    Also, I sent my PCP a message regarding a trial med(Any Suggestions? for the first one to try) (I have tried Lyrica but it didn't do much for me) before Sept. and keep a daily diary of my symptoms already, I will start keeping photos for the Rhuemo to see as well.

    Yes, my kidneys are affected by my flares as well as my heart. Then the Fibro varies day to day on the level of pain or tingling. But always wake up about a 5-6 on the pain scale daily. I am learning to slow down (some) and not be so OCD about things getting done. It is so hard to do though.

    Thank you again all and I will talk to you soon!

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