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Thread: Oh My Gosh! I'm finally on!

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    Default Oh My Gosh! I'm finally on!

    Wow! I cannot tell you how anxious I am that I finally have made it on here. I've been reading posts and learning so much here but because I kept messing up my registration I have not been able to get an account set up. Geez, I finally managed after a few tries this morning and HERE I AM!
    SO, good morning and my name is Kim. Many call me Kimmie (perhaps because of my short stature of 5 feet tall). Iím 42, married, 4 mostly grown boys ages 17, 19, 20 and 21 (two live at home). I live in Alabama and working outside the home. I have been searching for medical answers for years now. It mainly started with shortness of breath. Nothing could be pinpointed. Then August of 2009 my already slightly broken back exit issue became debilitating and very embarrassing. I had to go through 3 gastroenterologists before one finally gave me a diagnosis. I was positive for H. Pylori and had high lymphocytic infiltrates from stomach all the way out which he deemed Microscopic Colitis (this is questionable amongst other doctors). He also said I have way too much bile. I was treated for H. Pylori. Iím free now of the bacteria but still have to take meds, Welchol, for my bathroom/bile issue. But it still didnít explain some of my other symptoms that didnít go away, in fact just the opposite. I started getting MORE symptoms! Facial rash (which is now permanent but resembles more of a rosacia then the malar type rash), bone and joint pain, sensitivity to heat/sun that rash out my face, arms and chest. I now have more symptoms then what I can retain in my memory long enough to jot down here although I do have a printed copy for doctor visits(yup have the brain fog thingy everyone talks about). Well back in December of 2009 my family doc tested me for Lupus (I think it was just an ANA test) and I was one point from a positive. (She also diagnosed me with Raynauds) She sent me to a local Rheumatologist (who now is no longer in business) and he told me a negative is a negative and there is nothing he could do. So my family doc sent me to another Rheumatologist who put me on pain meds that didnít work. Ok this story is getting lengthyÖ.so the short is after family doc eventually suggested I see an acupuncturist I left that doc and sought out a new one. He has since diagnosed me with slight hypothyroid and tachycardia and put me on Toprol heart med. It worked ok for a few days but Iím still having some issues there. I have TERRIBLE flank pain, headaches, vision issues, memory issues, bone/join pain, chest pain, rashes, metallic mouth, mouth sores, hair thinning, ears ringing, shortness of breath, heart palpitations/racing heart rate, frequent UTIís, leg cramps at night, fatigue and Iíve probably left a few things off of this list but you get the idea. My new doc sent me to Vanderbilt in TN to see a Rheumatologist and this doc ordered a full Lupus Panel on me. I will find out in just over a week what the results are. He also started me on Prednisone thinking my flank pain may be pleurisy type symptom.
    In the meantime, my work is frustrated that Iíve missed so much time at work. Iím frustrated because I canít help it but I know itís not good for job security, hubby pushes me HARD to not miss work unless Iím dying so I feel like he just doesnít understand me. Now my family not understanding is mostly my fault because Iíve tried so hard to be strong for them and not show how I truly feel. Itís getting harder to do that and Iím working on slowly introducing them to Ďnot feeling goodí days and Iím having to learn how to be sick. Does that sound crazy?
    Iíve read MANY posts here and would sit reading while I nodded and wanted to interact but just couldnít wrap my brain around the registration issues I was having. So Iím VERY excited that Iím finally here and looking forward to becoming a part of this wonderful family of sharing and learning and great people that Iíve been (stalking) following for weeksÖ.LOL! Iím so sorry for the extremely long post .
    Kimmie

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    Well Hello Kimmie! We are glad you made it through the registration issues to post!

    As you probably know from reading you are going through what many people on here are going through. I remember trying to work with this disease. Because often you don't LOOK like you are sick they think you are being lazy. There is no way for someone who doesn't have it to feel what we feel. I usually give those really close to me a copy of "the spoon theory "http://butyoudontlooksick.com/naviga...poonTheory.pdf It doesn't help everything but it gives a great start to dialog;

    The doctors are another thing that ticks me off but my hands are not working well today so it is time for me to go. Once again I want to welcome you to the WHL family
    Mari

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

    ~Winston Churchill~







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    Thanks Mari for the welcome. I actually checked out the spoon theory a few weeks ago when I saw it in an older post perhaps you or someone else had posted. I related SO MUCH to it that I cried!!!!!

    I understand the frustration of doctors since I've seen almost 10 now in the past 1 1/2 years. I'm trying very hard to keep an open mind and learn to grow more of a backbone. I hope that your hands get better fast! I look forward to interacting with all of you and learning more as I go.

    Keep your chin up and get to feeling better soon

    Kimmie

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    Hi Kimmi,

    Welcome to WHL.
    I am glad you figured out how to sign up.
    You sound like a person who will bring alot of laughs to this site.
    Most of us know, that it is a battle until you finally get a diagnosis. So hang in there, hopefully it is right around the corner.
    As for your husband, he might be in denial. It is so hard for us lupies to wrap our head around this disease, just amagine how hard it is for your husband. Why is he pushing you so hard to work? Is your family depending on your income?
    It is different for me, my husband wants me to stop working, but I know, that we can't afford it. So I push myself and very rarely tell him how bad I feel. But he can see it and feels bad, that I have to work. We need my income and my good health insurance. Maybe once you have a diagnosis, he can educate himself and learn everything there is to know about lupus.
    Keep coming here and talk to us, you will see, how much it helps to talk to people who understand.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Hi Kimmie; I am so sorry that you had such a difficult time getting here. I also apologize for the fact that our request for help went unanswered :-( But, I am so happy to see you here and to see your post. Welcome to our family
    As has been said, the diagnositc merry-go-round that you find yourself on is one that is too familiar to many of us. It is especially frustrating when the doctors who are supposed to be specialists in our field, outright dismiss us. I am finding that we have more difficulties with our rheumatologists than we do with our GPs/PCPs/Nurse Practitioners/dermatologists/etc. Too many times, these professionals are more learned, concerned, and willing to work with us than are our rheumatologists who, instead, ignore our symptoms, dismiss us, belittle us, dis-respect us, and often leave us to suffer to the point of hospitalization and organ failure. There is something systemically amiss in the profession of medical doctors who are supposed to be specialists in auto-immune disorders. Its almost as if they took an oath (contradictory to their Hypocratic Oath) to do all that is possible to deny the existence of auto-immune disorders, to ensure that any patient presenting with symptoms of AI diseases be told that they are insane, and to withhold diagnosis and treatment until the patient dies (and then to list the death as something completely unrelated to the AI issues!).
    Forgive my rant about this subject, but it is one that has always been a sore point for me.
    So, back to you I am glad that you found the Spoon Theory was helpful. Have you thought about letting your husband (and other family members) read it to help them gain a better understanding of what you are dealing with and going through? I am glad that you have now started to be completely honest about how you feel and are learning "how to be sick". It is important that those who are closest to you have an understanding of the disease and how it affects you. Educating yourself and them can be one of the most important things that you do while trying to manage your life with this disease.
    Also, please know that you can come to us at any time and we will always be here to help you. You will find that there is always someone here when you have a need. This forum is filled with the kindest, most supportive, understanding, knowledgeable, and caring people on the web. Once again..I am so happy that you are here.......Welcome

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

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    Good luck to you and I hope you find out what is going on when you go back to the doc. take care we are always here. I love this site.
    Michele

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    Quote Originally Posted by Saysusie View Post
    Hi Kimmie; I am so sorry that you had such a difficult time getting here. I also apologize for the fact that our request for help went unanswered :-( But, I am so happy to see you here and to see your post. Welcome to our family
    As has been said, the diagnositc merry-go-round that you find yourself on is one that is too familiar to many of us. It is especially frustrating when the doctors who are supposed to be specialists in our field, outright dismiss us. I am finding that we have more difficulties with our rheumatologists than we do with our GPs/PCPs/Nurse Practitioners/dermatologists/etc. Too many times, these professionals are more learned, concerned, and willing to work with us than are our rheumatologists who, instead, ignore our symptoms, dismiss us, belittle us, dis-respect us, and often leave us to suffer to the point of hospitalization and organ failure. There is something systemically amiss in the profession of medical doctors who are supposed to be specialists in auto-immune disorders. Its almost as if they took an oath (contradictory to their Hypocratic Oath) to do all that is possible to deny the existence of auto-immune disorders, to ensure that any patient presenting with symptoms of AI diseases be told that they are insane, and to withhold diagnosis and treatment until the patient dies (and then to list the death as something completely unrelated to the AI issues!).
    Forgive my rant about this subject, but it is one that has always been a sore point for me.
    So, back to you I am glad that you found the Spoon Theory was helpful. Have you thought about letting your husband (and other family members) read it to help them gain a better understanding of what you are dealing with and going through? I am glad that you have now started to be completely honest about how you feel and are learning "how to be sick". It is important that those who are closest to you have an understanding of the disease and how it affects you. Educating yourself and them can be one of the most important things that you do while trying to manage your life with this disease.
    Also, please know that you can come to us at any time and we will always be here to help you. You will find that there is always someone here when you have a need. This forum is filled with the kindest, most supportive, understanding, knowledgeable, and caring people on the web. Once again..I am so happy that you are here.......Welcome

    Peace and Blessings
    Namaste
    Saysusie
    Oh my! Where was the request sent? I try to look at every post and I missed it. I am so sorry!!
    Mari

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

    ~Winston Churchill~







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    Hi kimmi! Welcome to WHL.

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    hi kimmi welcome whl we are a good bunch here and will answer and help with any questions you might have sorry it was hard for you to register it is good place just to talk when you need to and you will find someone always on to talk to as we come from all over the world and different time zones i am from sydney australia hope you doctors can give you the answers you need but know matter what we will be here hugs kim l

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    Thanks ALL for the wonderful welcome. Don't be concerned about my confusion with registering. It all worked out in the long run I was doing all sorts of bizarre things. Those type things we do and go, "Did I REALLY just do that?!" SIGH!

    Saysusie, I completely understand your rant over our doctors. I suppose it's not until you or a loved one suffers some sort of chronic illness that it becomes apparent that doctors really are a sad group. BUT on the same token what would we do without them, right? So with that knowledge that I've unfortunitely had to learn the hard way, I realize now how important it is for us to learn to the best of our ability to be our own advocates by educating ourselves (as we are all doing here by asking questions and learning from others) and learn to listen to our bodies and KNOW when things are not right and don't stop until we get an answer. It's a very difficult road and I know there are LOADS of others on here that also have had to go through this.

    I have thought about sharing the "Spoon Theory" with my family but I want to wait until I have a diagnosis confirmed.

    Debbie-b, in answer to your question about hubby pushing for me to work, I want to clarify that he is supportive of me and knows that I'm not well and IF I get bad enough where I'm not able to work outside the house, he would support that. However, we are both old school and feel like you had better be REALLY bad off to not go to work. Well as time progresses and my symptoms increase I often feel and wonder "Why in the world am I here working today" but I push myself because I hide how I'm really feeling from everyone. This is something I'm trying to change and work on. Being sick is harder than most would imagine.

    Well enough for now. I hope I responded to all. Talk with you all again soon.

    Kimmi

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