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  1. #1
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    Wink Newbie

    Let me start off by introducing myself....

    My name is Kristin with an "I"... not an "E", "A" or "O". It is not Kristine, Kristi, Kristian, or Kris. Just plain Kristin with an "I".

    I originally left Vancouver- WA... in March of 1995- however I missed my friends/family so much that I spent 2 years going back and forth. In Sept of 1997, I left Vancouver,WA - to Sunny and Hot Las Vegas.... for good ~ and I am still not sure if I will be able to give that up for the clouds... rain... drizzle... mist... and snow/ice. We have gone back and forth as to where we are going to go after my husband retires from the police department, and Vancouver has been one of the top running places... of course retiring in the Cayman Islands is more like it for me. We still have a couple years to decide as I am in no rush to leave Vegas. So when the sun is out and skies are blue I am happy and no one is happy unless the Mama is happy! My favorite saying.... "Happy Wife, Equals Happy Life..."
    I have lived in the Las Vegas / Henderson area since leaving Vancouver in 97. I have 2 beautiful daughters. I am married to a LVMPD Traffic Officer. 20 years on the department, 11 in the k9 unit and the past 2 1/2 in motors. He is also on the Sgt's list... waiting for promotion. I work for the BEST company ever! Bo & DeeMo! Bo & DeeMo is a Nine Bully Breed Couture Clothing Line Company. My Bulldog is a current Ambassador- however her year reign is almost over and since I do work for the company now... she will be the Official Bo & DeeMo Princess. Nothing like a job that includes your dog on every occassion! There is nothing that makes me happier than my English Bulldog Sophie. Sophie has played a very important role in my life the past 2 1/2 years. Gaining her Canine Good Citizen, among being a Registered Therapy Dog, she is also my Service Dog. My biggest vice is shopping. Frank’s theme for me is… “Spend, spend, spend!” I played 13 years of fast pitch softball when I was younger. All of these experiences have enriched me, helped me to realize that I am a person that can be counted on, that I follow through with my commitments, and that when driven by a passion I am very successful in whatever task lies ahead of me.
    I often find that when the realities of the everyday life tend to be crazy and complicated - I sit back and realize just how lucky we are to have everything that we do. At this point in my life- I could not ask for anything more. And enjoy it to its fullest - Yet without taking anything for granted!

    So that is my life wrapped up in a nutshell... however that is not including my life living with Lupus. I am 35 years old... and just before my 35th birthday did they finally diagnose me with Lupus. I have been battling Lupus since I was 3 years old. However, I am among the very few who do not have a positive ANA. Mind you I had test after test done... hospitalizarions, MRI's, Nerve Conductions, you name it. One would think--- to dig a little deeper when I spent an entire year battling horrific mouth ulcers at age 19. Or months upon months with antibiotic after antibiotic trying to get rid of a bacterial infection which resulted me in having my tonsils taken out when I was 18. From the age of 3, when the symptoms started, and the first hospitalization began... I was a mystery case. As they couldn't find the underlying condition as to the cause of it. Of course the symptoms would stop- and go into remission. Leaving my doctors scratching thier heads. The flares would come and go and the tests would show inflammation but aside from that the other labs would come back normal. Along with a negative ANA. As most people know- once they get that negative ANA, they do not run any further tests. To this past May. Where I had taken my Bulldog to the Veteran's Home for a visit we were there 1 1/2 hours and then a bit later that afternoon had taken her out to a Las Vegas Bulldogs Football game- which consisted of 3 hours. By the time I got home, I could not keep my eyes open. My hands, feet, and ankles were swollen beyond belief, and the stiffness had set in. The next day was a Sunday... I could not even get out of bed. I had a splotchy rash on my stomach, which would go away and return on my right leg and hip, then go away and return somewhere else, I had pain in my joints of my hands, my wrists, elbows, knees, feet, and neck. That doesn't even include the pain I had in my muscles. To touch me with the slightest touch sent me into tears. The fatigue was overwhelming. I couldn't stay up for longer than an hour without having to go back to sleep for another 2-3 hours. My hair was thinning, I had lost a significant amount of weight just before this. I couldn't walk from one end of my house to let my dogs out without getting winded and extremely run down... not to mention waiting for them to go out and then having to walk back to where I had originally come from in the second master. We are talking some 300 feet... give or take. I couldn't talk without stumbling on words, forgetting words... heck one day, my husband was driving and a truck next to us had dice in the rearview mirror. I knew what color they were... I could see it- and think it- but when I said it... I said Blue... they were Red! So, back to the doctor I go... he thought I had Polymyalgia Rhuematica... but I didn't. So he sends me to a Neurologist. Who thought it was Fibromyalgia. In fact he was insistant upon that. Of course having to rule everything else out first. I told him about my family medical history- so at the last minute he decides to run a full panel ANA. (Now, I have 2 friends with Lupus here... both of them said it's Lupus! Go to the Rhuemie) So I had scheduled an appt however here in Vegas there are only 5... which 3 are worth going to. I couldn't get in for 6 weeks. I see the Rheumie- he confirmed... that it was Lupus. See my Primary Care Doctor after... he looks over the lab results.... and said- Yep--- you have Lupus. And then asked how he could have missed that. I told him he never ran my ANA panel. He swore up and down he had... looked through my labs- and he was wrong. But, I was glad to hear he agreed with the diagnosis. I am still at a loss however. As no one has been able to tell me exactly what I am dealing with. We do know at this point- my kidneys are not being affected. I do have blood in my urine all the time, I had an ulcer removed out of my bladder, take meds for inflammation/thinning of my bladder lining. I've had inflammation of my uterus and ovaries... leading to surgery to remove scar tissue that had built up from the inflammation, - of course these all had occured before my diagnosis. They helped that is for sure... as my Nephrologist went way back with my medical history. And he said he could not believe I had not been diagnosed years ago. But- like most people... your neck hurts, you can't turn it, you have no feeling and prickly sensations going on... you often go to the Chiro... You have issues with your uterus etc... you see your OB/GYN... I had blood in my urine that I could physically see... I got sent to a Urologist... chronic ringing in my ears and vertigo... ENT... then my Neurologist... a Dermatologist- that told me I had trunkal acne... which wasn't even acne! I had painful spots that looked like acne- they hurt to touch, they never would come to a head like a normal zit. I would get them on my neck and jawline as well... I battled bronchittis for 4 months this past winter... hmmm... seems really wrong doesn't it... for that long! but Never once did anyone put the pieces together. Until now of course. I am seriously thinking of seeing an Immunologist. No one seems to be able to give me any direct answers as to what my Lupus is affecting. I had blood work done for Vasculitis- of course it came back normal... but no skin biopsy. I've had nerve conduction tests and MRI's come back all normal... but no explanation as to why for all these years I have been dealing with numb hands and feet... no sensation to the touch. My husband used to get upset as to how long I would take to shower. Well- it never dawned on me... I was shaving my legs over and over- I could feel the pressure of touching my legs- but couldn't feel the sensation as to whether they were smooth or not. Someone has got to have answers for me. I've been taking Predisone and Plaquenil since May. And thank you Prednisone... gained 40 pounds since May. Told my Rheumie in November- I can't stand it any longer. I can't deal with the weight gain. Much less having to buy clothes every few weeks because mine no longer fit. LOL So, he started me on Methotrexate and Folic Acid. I still get mouth ulcers, the pain and stiffness hasn't changed, I still have my splotchy rash that likes to migrate all over my body... so I suspect we will increase the dosage when I see him the end of this month. Oh lucky me! Not to forget taking Naproxen for the joint pain. Among my other meds I have to take for my bladder. Ya gotta love it though! This is my life now. I like my husband... want my old self back. But have come to terms with myself and my Lupus that this is as good as it gets. I live my life the best that I can and the best to what my disease will allow me to do not only day to day. But often times hour by hour or minute by minute.

    And now that I have typed a novel... and my hands can no longer type- but chicken peck as they have stiffened up and are screaming at me in pain. I shall say- I am glad to have found this site!

  2. #2
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    Welcome to WHL Kristin,
    your story is a common one here. I can identify with most of your problems. I agree with your thoughts about specialists, I asked them all to send reports to my primary and had her review with me so that she had the overall picture. Getting the doctors to communicate with each other helps.
    I have no thyroid due to AI diseases so between that and the prednisone my weight is troubling. I love that you played fast pitch softball; my daughter played and coached. Now my granddaughters play travel.

    Read the threads and stickies they are a help and a comfort. The chat box on the forum page is a good place to go and talk with each other.

    Welcome again we are here for each other
    hugs
    nonna

  3. #3
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    Good Morning Kristin. Welcome to WHL! I am so sorry that you have had to go through all of this. This site is full of people that are still fighting for a diagnosis (me being one of them) so we feel your pain! When they did the full ANA panel do you know what they found that made the difference? One of the things that angers me so often when I hear stories like yours is that according to the criteria set up for diagnosing Lupus you don't have to have the blood work to make the diagnosis if there are enough of the other criteria met. You should not have had to suffer through all of this, even without the blood work behind you, if a doctor would have been doing his job!

    Please make yourself at home. Feel free to look through the old threads or start new ones if you wish. This site is full of wonderful people who are always glad to help, visit or simply talk if that is what you need. I look forward to getting to know you!

    One more thing...Since I have such a terrible memory I will most likely call you KS628 most of the time so I don't spell your name wrong!
    Mari

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

    ~Winston Churchill~







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    Hello Kristin,
    Welcome to the WHL and i enjoyed reading your novel as you put it. lol
    I'm 42 and was born with it and like yourself, had alot of the same affects like yourself so i know what your going through, i'm under ENT, Dermatology, Rheumatology and Gyno now because of so much loss of blood they can't understand why as all scans and test's are clear besides a neurologist. Like yourself before you was put on the meds i'm as thin as a rake but have gland trouble and at the mo it's hypo, i've just been put on folic acid tablets for life as my anemia as come back and refering joint pains etc, we're all going through it so we do understand where your coming from but we all deal with it mentally in different ways, at the moment i'm not coping with it to great it gets me realy depressed.

    I love my husband like yourself but my baby in my life like yourself is my staffordshire bull terrier Bruno, not having no children because of my epilepsey being to dangerous i put all my energy i do have into him and he's brill with my illness's.

    You've joined the best family going for understanding you because since i've joined i've done some venting on here because sometimes i'm sure i'm doing my hubby's head in unless i'm totally paranoid but for some reason when i'm talking to him he shows a look of oh not again.

    Terri xxx

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    Hi Kristin,
    I would also like to welcome you to WHL! I can also identify with a lot of your promlems,
    and so sorry that you have had to go down the same road as a lot of us here.
    You will find a lot of careing & compassionate people on here, and a wealth of information!
    They have surley been a life saver for me! As im also finaly newly diagnosed sle & Sjogrens
    and cns vasculitis dr's still trying to find out if it's sle gone to my brain or sjogrens.
    Please excuse my spelling another gift of the brain disease! I have good days & bad.

    Have a happy New Year!!!! And a wonderful day!!!! Diane
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Kristen it is good to see another member join this forum. We are all looking forward to the valuable lessons we can learn from the difficulties you have faced so far. As your medication is sorted, you may see some of your symptoms start to finally settle down a bit. But in the mean time, it is so frustrating wondering what is happening to your body. Lupus is such an difficult disease to understand as it affects different people in many different ways. But usually, there is someone here who can relate to you. Take your time to read over the many threads, try not to get too overwhelmed, and if you remember reading something that was really useful, and you want to read up on the information again but you can't find it, just pop into the chat feature and someone there might be able to help you to find the information again.
    Diagnosed with Lupus - 22 June, 2010

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