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Thread: Poconos, PA

  1. #11
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    Well, here's what I think. My nose issues started during the 3rd month of my last pregnancy. My nose became so stuffed up that I couldn't take it! During the winter I actually kept the window down in the car as I felt like I was suffocating. They kept telling me they couldn't do much until after I delivered and to take Sudafed. Obviously, between not breathing through my nose and all that Sudafed, my BP went way up! By my 8th month I had such sleep deprivation that one day I was crying and I picked up the coffee table, threw it and it broke. I was 15 days overdue, had to check in to the hospital everyday and be on BP and Fetal monitor from 9-5. BORING!!! On the 15th day I was getting contractions but would not dilate at all. Then my water broke, so they had to do an emergency C-section. Oh! Back on topic! Two days after I got home from the hospital I was in the allergist's office to see WHAT was wrong with my nose! He ordered a cat scan; massive inflammation, 21 days strong antibiotic, Prednisone, prescription decongestant, cool mist humidifier, etc. Allergy testing showed only one allergy and it was severe, to mold. He diagnosed me with pregnancy rhinitis, but to this day I believe that was the beginning of my Wegener's! Through the years, I've had MANY sinus infections, bronchitis, laryngitis, non-allergic rhinitis, etc. Then a lung nodule showed up on a cat scan. My ESR was always high, but they said my blood showed no indication of WG nor SS. I now know it doesn't always show by labs. So my current rheumatologist is certain it's Wegener's. I've had the RA at least 8 years.

    Quote Originally Posted by mrtmeo View Post
    Hannibal has a face just like an orange cat I had, named Tigger.
    His belly gets me every time I see it....LOL

    You said that you had problems with your nose for 22 years, could you have had weg's that long?
    How long have u had the RA?

  2. #12
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    Hi Karen!

    Thank you!


    Quote Originally Posted by kaysee View Post
    Welcome Spirit,
    I love your kitty too. Welcome to the forum. I am 68 years old and also divorced. I live alone with my cocker spaniel. It took over two years for my diagnosis. I have a lot of "used tos" as well, seems we all do. I had to retire from teaching this past June because of this dumb disease. You have come to a great place to get some good advice from people going through the same experience or to just vent when you need to.

  3. #13
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    Hi Lisa! Thank you!

  4. #14
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    Hi Michelle!

    It's good to be here! I wasn't diagnosed until last year!!! I couldn't understand why it took so long! Meds? Too many! LOL Off and on Prednisone more than I want to be! Had to stop my Humira injections cause of my brain lesion. Hopefully can go back on after my new MRI. Etododol for inflammation.

    Quote Originally Posted by mishb View Post
    Hi Spirit
    Welcome to the best forum in town. I'm so glad you found us.

    What a horrid 3 years you have had, no-one should ever have to go through that much in one go, even though many on here do - unfortunately.

    I love your sense of humour. You have to laugh because no-one takes any notice when you cry anyway

    How long ago were you finally diagnosed and what meds are you taking?

  5. #15
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    Thank you!

    Ummm...'and even one who has climbed Mt. Everest and runs sled dogs in the Iditarod race each year.' Ohhhh nooooo. My daughter and I LOVE recreational mushing!!! She's a natural! >3 But I can't do it anymore, and can no longer cross country ski and I MISS THOSE THINGS TERRIBLY! We are snow lovers. The Iditarod...I used to love it until I did some research and read some news and sorry to say but no one will ever convince me that those doggies aren't neglected and abused. Yes, I'm on FB and belong to a WG group.

    Quote Originally Posted by annekat View Post
    Hi, Spirit, and welcome! So far, I'm really enjoying your posts, except for the unfortunate parts about your health issues and "used tos", of course, which you are dealing with as well as could be expected. Sometimes effective treatment takes a few years, and you may eventually be able to resume the activities that you've had to cut back on. I have a small pottery business and Wegs has taken its toll on my ability to produce a lot, but after almost 4 years of treatment, am feeling myself bounce back better than ever. Not that it takes everyone that long. But there are people on here who very actively ski, work out, and even one who has climbed Mt. Everest and runs sled dogs in the Iditarod race each year. So a cake business, writing, and working at a ski lodge are not at all out of the question. BTW, I am 62, so right in your age range, as are several of us on here.

    I also help feed feral cats, and am a great cat lover in general. The farmers market where I sell pottery has a very small, established colony of only three cats, an old mama and two of her offspring, who have all been TNR'd. (Trap, neuter, and return, for those who don't know.) Before she was fixed, babies were popping up in people's stalls. I've taken home several of the babies and presently have three. Of course, being near a downtown waterfront area, there are probably dozens or even hundreds of other ferals nearby, who come out at night, but our little colony has rarely been intruded upon by other cats, and we just cannot encourage more at an open-air farmers market setting. We are lucky the management lets us keep the ones we have. Occasionally we will have raccoons around, so try not to leave food out unmonitored. I could go on and on and am only telling you this because you are a fellow cat lover and rescuer.

    So, anyway, I'm glad to hear your story, and that you have joined this wonderful group of people. There's plenty of time to hear more about each other's Wegeners and all. If you are on Facebook, so are a bunch of us and I can get you involved there if you'd like, just let me know either here or by private message. We can initiate a friend request and get you hooked up with some individuals and some groups if you are not already aware of them. Looking forward to more posts from you!

  6. #16
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    Thank you, Debra!

    Thank you!!! Yes, I have several specialists. I'll go to Phila. for my mouth issues.

    Quote Originally Posted by Debra C View Post
    Hi Spirit, I also just wanted to welcome you to the group. I am sorry to hear ALL the issues you have.Are you on SS disability,that will help a lot if you need it ? Have you tried the Hosp. in Philly or even the University of Cleveland Hosp.,they both have excellent drs as well as Cleveland Clinic. That's one thing with this disease,you need a different dr for just about every part of you . I think I have at least 7. Good luck to you and I hope you find a dr with the right meds for you soon.

  7. #17
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    Spirit, I saw you on TV, right? With the mountain climbing and the sled racing. I cried cause I always tell people that I can live with this disease, I won't ever climb a mountain or anything like that...and then I saw you climb a mountain.

  8. #18
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    Oh! Yes, I was approved about 8 years ago for SSI.

  9. #19
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    Me? Climb a mountain?? NEVER! I'm afraid of heights! LOL As far as racing the dogs, I think that's wrong. But I DO think that RECREATIONAL dog mushing is GREAT for the doggies AND people!

    Quote Originally Posted by LisaMac View Post
    Spirit, I saw you on TV, right? With the mountain climbing and the sled racing. I cried cause I always tell people that I can live with this disease, I won't ever climb a mountain or anything like that...and then I saw you climb a mountain.

  10. #20
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    Oh yes, I see more clearly, what you wrote was that 'one of I'd has climbed My Everest. I saw her on TV and immediately felt like a failure. I mean hooray for her, but my body 'climbs mountains' just getting through a day. Lol. O guess we all have our own mountains, right?

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