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Thread: Rough Patch

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    Default Rough Patch

    I am mostly new to this forum. I have made a few posts and have been reading posts andinformation for a few years on this site. I am having a pretty miserable go and am feeling very overwhelmed. I have been in a flare for a while now and feel like I caannot get back to normal at all. The flares, i think, are from the fact that I am now getting ovarian cysts every month and that is just making me more weak and allowing the flare to really settle in. low grade fever, joint pain, joint sweling, sjorens flare with my eyes, emotional issues and nerve pain are at their worst. And the fatigue!!!

    I work fulltime and I have had lupus and RA since I was 8, well lupus wasn't diagnosed till mid twenties but JRA and then RA when I was 8, and lupus symtoms since childhood. For about the past 5-6 years (i am 32 now) i have been pretty good. I take plaquenil but that is it, tylenol arthritis for inflamation. mild flares, nothing i can't handle but this time it is so much worse. no matter how much i rest or nap or whatever, i feel exhausted and if i lay down to rest my eyes, next thing i know 4 hours have gone by.

    I type, and i type the wrong letter. I talk and i stumble over every word. I hear someone talking and I say what because my brain can't process what i am hearing. the brain fog at its worst.

    I am just praying that the worst will pass quickly. My mother also has lupus and I tend to keep my venting to myself because I am always scared she will be worried about me and that wil set her into a flare. But of course, when you are sick, you just want your mom so sometimes i get upset that i have to bottle it all up. Its a strange situation because the one person who can understand how you feel is the one person you don't want to talk to. So i am hoping some of you can keep me in my thoughts and send strong vibes my way... i really need them right now.

    Catherine

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    Hello and Welcome, Catherine....

    I am so sorry...you've been through more than any person should have to...and I'm sorry you've been having to suffer with the symptoms of JRA from such a young age...and then Lupus too. What a huge life struggle for you! Man, you need more than just positive vibes sent your way...you need a huge HUG and a shoulder to cry on. Sending gentle HUGS to you and my most positive, encouraging vibes....and I'll throw in a special prayer for you too. In fact, I'll put you at the top of my prayer list today.

    I'm terribly sorry your recent flare is such an energy draining, debilitating one. I've had Lupus since I was 18 (27 years now) and I remember so well the low grade fevers day after day and the joint pains that moved to different joints every day and I understand exactly, the fatigue that can make you sleep for hours...this can all make you feel miserable and very ovewhelmed..and like it's never gonna end. It can quickly spiral you into such frustration and depression, especially if you don't have anyone close to you to talk with and share your feelings. Everyone needs that outlet to vent and cry and just tell someone how awful you're feeling. With this disease, it can make it even worse if you have to bottle it up and keep everything to yourself. That causes us great stress in and of itself. I'm sorry the one person you wish you could open up to, your mom, isn't an option for you...you're such a sweet daughter to try to protect her...and I'm sorry she has Lupus too.

    You mention you've been on Plaquenil for your treatment and it's worked well up till now...Have you talked to your doctor/Rheumatologist about the severity of this particular flare and what you're going through? Perhaps he or she may want to adjust your medication dosage (I don't know if this is possible with Plaquenil, I've only been on Prednisone and Imuran), or maybe add another med for the short term to get on top of this. I'm certain there are some options for combining different meds to try to get on top of the worse kinds of flares. I would encourage you to give your doctor a call right away.

    And I'm wondering if you've ever used a therapist or counselor, as a person to talk to about your struggles with your illnesses? When I reached a point with my Lupus where I just couldn't take the pain and suffering anymore and I was extremely overwhelmed and had no one to talk to that truly understood what I was going through, I finally sought help from an excellent therapist. And she was a Godsend...she helped me deal with my frustration with the disease, my anger at the world, my depression, and she gave me some great tangible ideas to incorporate into my day to day life with Lupus. I am of the mind that every person with Lupus should ask their doctor to give them a referral to a therapist...I believe we can all use their services at some point in our journey with Lupus. I feel like they are another important part of our team of doctors and professionals to help us with our treatment...actually, to me one of the most important after your Rheumatologist. I don't know what your insurance coverage situation is, but you might check to see if you have benefits for a mental health counselor or therapist.

    Lastly, I'm glad you took the step and decided to join us in conversation on this forum and not just read from the sidelines. I'm positive you're going to find that the people on this site are the greatest for support and understanding and I know they will make you feel very welcome. There is always someone here to listen when you want to vent or share, or just plain throw your hands in the air and scream....we've all had the chance to do that. And this is a great place for acceptance for who you are and for whatever stage your Lupus and your life are in.

    Please keep coming back and know that you've found a group of people that want to help you in any way we can...and will do our best to lift you up when you're down and encourage you through your days.

    Catherine...you are in my prayers...

    Fondly,

    Lori

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    Hi Catherine,

    You can vent as long and as often as you like., we are good listeners. In Germany, we have a saying, shared misery, is half the misery. Sometimes it helps just to write everything that bothers us, down. I hope you will start feeling better, very, very soon.

    Debbie

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    Hi Catherine and Welcome. Im sorry you have been having such bad flares lately Lori makes a VERY GOOD point about talking to a therapist. I have done the same for the past 3yrs and it HELPED me SO MUCH. I say we need to do what is in our power to take care of ourselves because no one else can. Sure we can get support from loved ones and they can help us in alot of ways but WE have to take the bull by the horns ourselves. Have you talked to your dr. about why you keep getting these cists and is there anything that can be done to stop them or get them under control somehow? I believe you're right about them causing your more difficult flares. It makes sense because when our bodies are in any kind of turmoil it effects us that much worse due to our illness. Ive read, and now am experiencing it myself, that one of our worst times as a woman with Lupus can be during PMS or other hormonal changes. Im going to talk to my gyno about the options i have to make this less of an issue now because i dont need to (or want to) be going through these HORRIBLE FLARES for about 2weeks out of EVERY month. Its too taxing on my body. I
    DOnt need to speed up this process of my body detereorating and YOU dont either so i would talk to your dr about options for YOU. We're ALL here for you whenever you need us! Please take care of yourself
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    hey Catherine,

    Sorry to hear that you have dealt with this stuff for so long.

    I to have the cognitive problems and they have gotten worse lately...it is the pits...

    I can understand you wanting to spare your mom, but were it me, I might want to try to be there for my kids...at the moment, I have one daughter who they think has chrohns disease, and a baby granddaughter who is being tested for autoimmune.

    But if your mom's health is fragile and you don't wish for her to get depressed over your pain, then you do need to see a therapist...that enables you to vent all you want...
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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