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

  1. #21
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    It sounds like you are doing a fine job of trying to keep from over doing. I too have a strong work ethic, but for two days I had to look at my dirty dishes, because my arms & neck hurt so badly. I just had to lower my clean standards, use paper plates sometimes, I even hired the little neighbor boys to carry bags of potting soil for me. They were worth every penny. I'm.learning to ask for help, which is the last of my pride to go (grin). The doctors took the first of my pride!

    I hope and pray you get SSDI. I have helped several of my clients apply and get it. The thing that seemed to help them the most was when I wrote details as to what I witnessed as I worked with them in my mental health program. If we could get good docs to validate that we are a mess (smile), I believe it would help. I live in PA. I don't trust their docs 1/2 hr diagnostics. If you are denied appeal. Trust me on this.

    Keep up the good work!

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  3. #22
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    Hi Tanya and Scott!

    : )

    Welcome, I hope we can ease your burden, even if all it is, is to listen to you vent and get stuck into some rheumy bashing lol

    I too show and breed dogs! : ) It is a fantastic hobby for someone that likes to keep busy ALLLLL the time.

    Like a lot of us here, I too am going through a bad doctor run... mine has lasted six years. And for this reason, I have become a great advocate of putting your foot down and speaking up for yourself. I let it all go and ignored my illness for nearly 6 years... I just kept on keeping on... the consequences were this... I now have a tremor that looks to be permanent and severe cognitive decline. Soon enough I wont be able to work anymore, not in any 'job'. So I am starting my own dog training business.
    SO my dear Tanya... may I strongly suggest that you throw all your energy into your dogs, thank your lucky stars you have such a fantastic man by your side and try not to push yourself too hard. Because this disease has a habit of MAKING you stop, perhaps permanently. I know how hard it is to change your busy lifestyle to accommodate your illness... and honestly it is even harder to do so, when everyone around you has always admired you for your energy and your go go go attitude. Sometimes it becomes expected of you, regardless of what is going on.

    As for meds... you should at least be on plaquenil. It doesn't eliminate the disease or the majority of symptoms, but it will take the edge off, I find especially regarding lupus rash and overwhelming fatigue. Not that I am a doctor... but its often the general standard.

    Anyway, greetings! I hope you get that new rheumy appointment soon. Maybe tell the receptionist next time you call that going through this cancer treatment is bad enough, but there is barely enough of you left with the lupus in full effect... sometimes a little back story can help you get the next canceled appointment... otherwise you are just another person with lupus waiting.

    Forgot to add... I too dont have a supportive family. I think it may be more common than people expect. I have always seen families on TV, on the news and in movies, banding together around a sick family member. I've been jealous and cynical of the support I see in families on TV. In reality, my parents left me to die, when a tumour I had hemorrhaged and I needed emergency life saving surgery... and they wouldnt help me get a loan to pay for it. It broke my heart forever.

    My sister now is going through diagnosis of her own. She has always been small and fit and lived an EXTREMELY health conscious life being a personal trainer etc etc. But over the past five years she has developed signs of pre-diabetes. She needs to eat every hour or she becomes dizzy, gets the shakes and eventually passes out. She has the symptoms of low blood sugar, but when they test her blood sugar, it comes back extremely high. Recently, she passed out and broke her front teeth : (
    Tests revealed cysts on her brain and ovaries. Her T bilirubin was doubled and her iron levels were double the acceptable level!!!
    She lives over 1000kms away from me... so I asked my other sister to go with her to the specialist appointment. Her response was "No... she is a big girl, she can look after herself. Stop worrying so much.". Nice family huh?

    Anyway... she had to go alone. The specialist did nothing, no diagnosis, no follow up, nothing. Didnt even ask her if she had abdominal pains, didn't send her off for a CT for her liver or pancreas. Told her to eat healthy, stay active and dont put on weight.
    She has clear signs of liver or pancreatic disease... and they did nothing! When I move down to where she is I am taking her to the god damn specialist and making them do the appropriate tests! She almost passes out in the car for goodness sake... her condition is serious!

    Anyway lol sorry for hijacking your thread.
    Last edited by giggle; 06-23-2011 at 03:08 PM.

  4. #23
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    I am SO sorry to hear of your sister! Yes, in spite of how your relationship is she needs you! If anything to speak up and not take the "I don't know" as an answer.
    My positive energy and thoughts are in her direction.

    Without my dogs and starting my small business I would have gone insane! I have never NOT worked! I enjoy the shows as much if not more than when I showed horses and competed. It helps take the focus off how crummy I am feeling and forces me to stay out of bed after gettting my kids off to school.

    I have contacted my PCP about the Plaquenil. It is not in my nature to be a vampire however am/have learned to make adjustments to when and how long I am in the sun.

    SSDI I have appealed and will continue to fight. The whole process is just frustratitng. Especially when I see those younger than I (I'm 37) by 10 years and because their mom drank alcohol while she was prego they automatically got it at 18 without ever working a day in their life. Ugh! Like the bad doctor subject of which before I was diagnosed I saw 16 different doctors in 14 months, I could go on and on.

    My family loves me however, is a large family and well dysfunctional. My mom thinks everyone should get a ribbon and sort of gets it. My dad blantently does not believe in medications and I am sick because of my blood pressure medication and the medications I have been prescribed for the pain and headaches. (Topamax and Tramadol) I do take Celexa 10mg as a mild 'chronic pain management' and anxiety medication. However, my hypertension I have been on since I was 26 and if I don't take it I would stroke out or have a heartattack. He feels I need to exercise and get into the sunshine more. Not getting it. I can't do either! Well, I walk my dogs on my good days and Scott bought me a really nice bicycle to just liesurely ride around and is less impact on my joints. My brother is too wrapped up into his own world to even call and just say "how are you?" Therefore, my teenage children and Scott have been my rocks and shoulders to cry on when I need it. But, trying to not be a burden on anyone I do a lot on my own and my dogs get an earful A LOT!

    Just reading through the threads all my symptoms and the way I feel it's just nice to have people who can FINALLY relate! Like today drove to have an Ultrasound done on my neck as my routine yearly post Thyroidectomy, the sun coming thru my tinted car window for 45 miles there and back, left my arm in a rash and my cheeks and lips feeling stingy, itchy and red. The unbearable fatigue we get sometimes. OR how we crash and HAVE to lay down at somepoint in our afternoon.

    All I can say is this site is my new BFF and I am incredibly happy to have found you all.

  5. #24
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    I totally get the car issues. You can get UV tinting put on your car windows, and it helps alot. In Colorado there are legal limits for how dark your windows can be, but supposedly with a doctor's note you can go beyond that. The tinting place should be able to tell you what is legal. My rheumy told me they make clear UV coating, but I wasn't able to find it. A sunshirt and sun gloves are great investments - keep them in the car to pop on every time you get in. I keep sunscreen in the car, too, in case I forget before I leave the house. You can buy face masks and scarves to keep the sun off of your face - but some of them might get you pulled over if there is a bank robbery or murder in the neighborhood LOL.

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  7. #25
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    I carry sunscreen in my purse as well since I have trouble with UV lighting. Cars and stores are the places people don't think about but they can cause a world of trouble
    Mari

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

    ~Winston Churchill~







  8. #26
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    All great information. Such a useful site. Tanya, how did we get this far without these folks? I wish I had something constructive to add but unfortunately I'm learning about this as we go along.

  9. #27
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    Quote Originally Posted by Tanya's guy View Post
    All great information. Such a useful site. Tanya, how did we get this far without these folks? I wish I had something constructive to add but unfortunately I'm learning about this as we go along.
    Don't worry - your time will come to help someone else along this road. You have a unique perspective as a significant other and caregiver and your voice is an important one for us to hear.

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  11. #28
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    I wish someone could talk her into moving in with me. That way she would have much less to do. I would do all the physical stuff that makes her uncomfortable. I love that woman more than any words could ever put together. It just breaks my heart to see her going thru this. What really hurts is if she did live with me then I know she would be doing much better. Kids kind of are getting the way of that right now so I just need patients.... Our day will come. I'm certain of it.... And when it does I will be there with open arms even if it's 20 years from today.

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  13. #29
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    aw dude, you are so sweet! What a lucky girl you are Tanya : )
    I guess she will move when she is ready. She sounds like a very independent lady. It might be a huge undertaking to move as well, relocating children and dogs and horses? lol

    Thank you for your thoughts regarding my sister... its been playing on my mind a lot... I want her to be safe.

  14. #30
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    Quote Originally Posted by Tanya's guy View Post
    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.
    Hi Scott,

    It's lovely how Tanya eventually came on and poured her heart out as it will help you both in so many ways because not just having one another but you both have joined a close family with us all at the WHL who will support and give advice as best we can, as we're all living in the same situation's.

    Hugs to you both Terry xxx

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