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Thread: Hello! I am a new member.

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    Default Hello! I am a new member.

    Good morning everyone! I joined because my wonderful husband of 36 years was recently diagnosed. I am hoping this forum will help me help him live life to the fullest with a slight "turn".

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    Welcome Ferretsmom...really? A ferret? LOL! Sorry about your husband's 'new normal'...he will do fine with his slight turn in life. There will be many protocols to be followed, more drugs than one can imagine, and many avenues to explore. Please ask any and all questions you both may have, share your stories, vent if you're frustrated (we've all been there!), and know that the people on here are here for your (and their) best interests. Best to you!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hello Ferretsmom,

    I'm sorry to read about your husband, but know that there is an 'out' of the hole he, and you are feeling in right now.

    There are great people on here who will help you with a myriad of issues that arise out of this situation. I know they empowered me and have made me into an educated, self sufficient and strong patient and advocate.
    This is a great place to be in a crappy situation. I also have some great stories written by Weggies on my blog that can give you hope and inspiration. Weggies Unite: Other Weggie Stories

    All the best and wishing your husband a quick recovery.

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    Welcome, Ferretsmom! I don't know what I can add to what Don and Marta have said, except that I'm glad you found us, now that your husband has WG. You and he will both feel a lot less alone by being here, and will find encouragement that he can recover from the worst of this and move on to living a fairly normal life. All the same, I'm sorry about his diagnosis, but it is better than not knowing what he has, and I trust he is getting the proper treatment, which should make him feel a lot better, and I hope that will be before too long.
    Anne, dx'ed April 2011

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    Hi Ferretsmom and welcome to you and your husband - from me, in Australia.

    I'm so glad that you have found us - but as we always say - Sorry that you had to

    We would love to hear more about your husband, his symptoms and what type of medication they have him on.

    Someone is on this forum, any time of the day as we come from all parts of the world.
    If you ever need some advice, someone to yell at to let of steam, or just a laugh - you know where to come

    Take care of both of you and .........
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Hello ferretsmom, I'm a wife of a weggie too. You will find lots of great information here and lots of support. Any more details on hubby's story?m
    - You can judge the character of a person by how they treat those who can do nothing for them.

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    Hi Ferretsmom, Welcome to the forum and ditto what has already been said. When you are ready please share some more of your husbands travels to/in/through the world of Wegs. Someone is always here if you need to talk. Also there are extensive archives with a wealth of information in them. Remember to take time for yourself to. It's rough being a caregiver. Again welcome to the forum.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Hi, and welcome.
    can you tell us please, what is your husband suffering from ? what medications is he taking ? where do you live ? and whatever you wish to tell....
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Welcome! This is an awesome place for venting and information. Can you tell us more about your husband's situation?

  10. #10
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    Thank you everyone for replying so quickly. I am sorry I have not been on for awhile. My husband helped me sum up his history and the list of meds he is on. So, here it is:
    His medications are as follows - AmLODIPine Besylate 5 mg oral tablet (one daily), Cyclophosphamide 50 mg oral tablet (one tablet 2 times daily), Gabapentin 300 mg (2 capsules 3 times daily), Hydrochlorothiazide 25 mg oral tablet (one tablet daily), Sulfameth/Trimethoprm (one daily 3 times week).

    Here is a short summary of how things happened: six months of missed diagnosis, foot pain (misdiagnosed as gout), sever muscle pain from waist down, shoulder and arm pain, blood work, severe sinus infection, MRI showed something behind inner ear, GP referred him to ENT, ENT put tube in right ear, more blood work, did a nasal scope, said I had Weg/go to a rheumatologist, mmore blood work, positive for Weg, started medications 12-19-13. He still suffers from feet pain.

    Now I will share a little personal history with you. My husband and I have been married 36 years. We have two beautiful daughters. One is in heaven - Donna died 5 years ago from complications of juvenile diabetes. The other daughter, Valerie lives in Milwaukee. She is a graphic designer and has a wonderful dog, Pickles - our grandog. We also have a wonderful grandaughter, Kylie who live with her Dad in Oklahoma. Kylie is Donna's daughter. In a short time span of ten years I lost my Dad, daughter, mother and sister. My great husband helped me cope with all of this. Of course all those deaths affected him too. So you can understand my first reaction after hearing my husband's diagnosis - can you spell "not again". However, we are both being VERY positive about this "turn" in our lives.
    My husband built his own company - 30 years strong last year. He owns Precision Laser Alignment. He has traveled all over the country. He has not been able to work for months and that is hurting him. He takes such pride in his work and hates to tell customers to put a job on hold. He uses lasers to align machines. It is a very specialized line of work.
    His other passion in life is boating on the Mississippi River. We love boating! That is one place my husband relaxes - at the wheel of his boat.
    Right now we are trying to decide if he should retire. I have gone on too long in this post. I will try to come here more often.
    Oh, I work at the courthouse. I am in charge of the judges schedules and jury summons. Thanks for listening everyone! Please reply - thanks!

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