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  1. #16
    Join Date
    Feb 2005
    Location
    Concord, MA
    Posts
    13,394

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    I really don't think I have Lyme Disease. I've had some of these weird things for over 20 years; I lived in AZ when it started.
    I am not adverse to alternative medicine, but in this case, that will not help if I have thyroid cancer. I have tried chiro and found it to be most unsuccessful. I would rather investigate PT or accupuncture if I go that route.
    Silver, they would not put me through the "radioative" thing first, I would have the needle biopsy. I already had the regular ultra sound, which confirmed what the dr. felt. I am nervous because one of the nodules is solid and I think it is causing the pain in my ear (not common but can happen).

  2. #17
    Join Date
    Jul 2003
    Location
    Traveling Nomad
    Posts
    6,763
    Robyn,

    I have nothing new or useful to add, just wanted to lend my support and caring. The community here is wonderfully supportive, so I am really glad that you divulged your situation. Please do keep us updated, and know that we're all pulling for your improved health and for a benign diagnosis.

    Warm thoughts,
    Emily
    Emily

    2011 Jamis Dakar XC "Toto" - Selle Italia Ldy Gel Flow
    2007 Trek Pilot 5.0 WSD "Gloria" - Selle Italia Diva Gel Flow
    2004 Bike Friday Petite Pocket Crusoe - Selle Italia Diva Gel Flow

  3. #18
    Join Date
    Feb 2006
    Location
    San Antonio, TX
    Posts
    2,024
    I know you are freaked out at the possiblity of thyroid cancer, but benign thyroid nodules are relatively common, and you know that the probablity is that yours are indeed benign. So operate on that assumption until proven otherwise. I know its easier to say than do, but I think the best thing is to not worry about it until your doc tells you there is something to worry about. That is why we get screened. Without screens, lots of nasty stuff goes undetected, but when screens turn up stuff that could be scary, we need to hang tough until the real test results are in. Thanks for sharing, and warm wishes go out your way to hope you and your docs get to the bottom on your problems.

  4. #19
    Join Date
    Jan 2006
    Location
    Pacific Northwest
    Posts
    3,436
    Quote Originally Posted by spokewench View Post
    Fibromyalgia - is what is coming to my mind, the phantom pains, etc. I know a couple of ladies that have this; it is a hard diagnosis and something you want to be careful with being diagnosed with since it can ruin your ability to get healthcare paid for. Of course, I'm not doctor or anything of the sort, but some of your symptoms sound familiar to how some of these ladies described their problems.

    Anyone else on TE have fibromyalgia that might be able to help with websites or something?
    EXACTLY what I was thinking, and it's because it sounds so completely like what I went through years ago before my fibromyalgia was diagnosed. In the process of many scary years, I thought I had MS. I've been tested for lupus three times (don't have it). I've had tingling and odd muscle twitches and headaches. I had these symptoms and others (visual symptoms, for example) for many years before I got diagnosed. Thyroid nodules are really common and usually aren't cancerous.

    My advice is: find a well-trained, young rheumatologist and ask about whether this could be fibromyalgia. I have never had any trouble getting health care coverage, by the way.

    PM me if you want. I can't tell you how familiar this all sounds, although I realize that doesn't automatically mean it's the same thing. I am doing very well, by the way, so please know that you will not always be this scared. And feel free to ask my spouse sometime how insanely anxious I got the first time I was tested for lupus.
    Last edited by salsabike; 10-02-2007 at 08:39 PM.
    "My predominant feeling is one of gratitude. I have loved and been loved;I have been given much and I have given something in return...Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and an adventure." O. Sacks

  5. #20
    Join Date
    Feb 2005
    Location
    Concord, MA
    Posts
    13,394
    Again, thank you, everyone, for the incredible support. I had a really bad night. I can't fall asleep and then when I do, it's for about 2 hours. Then I wake up and the whole cycle starts again. I managed to sleep until 7:15, so I probably got 5 hours? My husband is working from home most of the next 2 weeks, since this is when we were supposed to be away. He doesn't know what to do with me. We are both very pragmatic people, but in this case, I seem to have lost all perspective. Anyway, after an hour of crying, I called the endocrinologist back and told the receptionist what was going on. They are seeing me tomorrow (I think when I said i can't eat, sleep, and my blood pressure is up helped). At least the whole process will go forward sooner.
    Intellectually I know most of these things are benign, but my neck is hurting and the ringing in my ear is making me believe it is connected to the thyroid thing. I keep assuming all of my other pains are a big scary cancer all running together. I know it's stupid and not likely, but the thoughts are there.
    In answer to the other points, I know about fibromalaygia (sp?) and will definitely bring it up with the rheumo. He is fairly young (40s), Harvard trained and practices in Boston one day a week, so he is hooked into all of the medical research community here. He listened well. I have excellent medical insurance, don't need referrals, so there's no problem there.
    My husband got the name of a therapist for me, but I really don't want to start there. My other concern is that Steve will be going away Oct. 27-Nov. 3 to Japan and Korea and I am freaked out about being alone with this issue. All of my friends work, except for one who is really crazy and over reacts to everything. She doesn't know about this.
    I will keep you posted.

  6. #21
    Join Date
    Feb 2006
    Location
    San Antonio, TX
    Posts
    2,024
    Hi Robyn. So sorry you are going through this. Hopefully getting in sooner rather than later with the endo. will help. I agree, I think having the facts now is all that can stop your imagination from going wild. Do you have any family members that could come and stay with you while Steve is away? While sometimes its hard to ask for help, sometimes that is the best thing to do. -eileen

  7. #22
    Join Date
    Feb 2005
    Location
    Concord, MA
    Posts
    13,394
    Well, not really. I mean my son lives and works in the city, and does stay here once in awhile, but it would be a hellish commute for him. He is coming over tonight and I will ask him. My other son is in the military. My only other relative here is my aunt who I am not on good terms with. She is a negative super conservative, hateful person who never got over the fact that her husband died when she was 50. She focuses on health problems and would try to take over, as she did when my mom was sick.My cousins (her children) are useless. One is a gun toting Jewish redneck and the other is Orthodox and won't even come into my house. My female cousin is OK, but she's young and not particularly effective with things. My dad and brother live in San Diego. I have lived most of my adult life with friends as my family.
    Well, I am getting off the computer for awhile!

  8. #23
    Join Date
    Oct 2005
    Location
    Israel (Middle East)
    Posts
    1,199
    Nothing hellovan intelligent to offer but thoughts.

    And to suggest that you try not to worry yourself into a tail-spin. Easy to say but you have a brilliant mind that I reckon you could get it to convince your brain's "worrying" circuits that it's in everybody's best interests that they should stay quiet for a while!
    You have family, friends, TE and a string of good doctors. If there is something to find it will be found. In the meantime several terrible things have been crossed of the "possibles" list.
    And remember : at any given moment chances are that nothing terrible is actually happening to you. So if you live in the moment and say this to yourself (the above) when you start to "think thoughts" you can calm yourself remarkably effectively.
    I also recommend nice music (like those Nature Sounds ones) and nice pleasant art or pictures.

    btw, I love your description of your extended family!

    All you need is love...la-dee-da-dee-da...all you need is love!

  9. #24
    Join Date
    Apr 2006
    Posts
    3,867
    Ditto what Margo said. What you need is distraction. Do something to change your state of mind, and what's best is usually something physical. Can you take a walk or get you and dh in the car and go out somewhere that you won't have to interact with a lot of people? (Or maybe where you DO.)

    Maybe there's a nice calm place you can walk around with your husband--a botanic garden or something? That way you can still sort your thoughts, but have more opportunity to focus on something else? Even if you don't feel like it, give it a try, knowing ahead of time that you can leave if you really can't handle it.

    I often use this idea with my children, kind of a 3-way communication. They tell me more about their thoughts and feelings when we're doing something else that doesn't require too much attention, like a hike down a nature trail. I suppose there's something mind clearing about it.

    How about some stream-of-consciousness journaling? Pour it all out on the page.

    Do something else to make the time pass, because that's the goal--allowing the time to pass. Don't think too much about when your husband will be away--it's still a ways off and this can all be over by then.

    Still vibing,
    Karen

  10. #25
    Join Date
    Feb 2005
    Location
    Concord, MA
    Posts
    13,394
    I did go out with hubby today. We are building a patio and finishing backyard landscaping, so we went to buy some things related to that. Then we went out to lunch. I was afraid I wouldn't be able to eat, but I did. I have been trying to exercise, still, but last week was a wash; all I did was the ride on Sunday, which was really good. Yesterday i walked the 2.5 mile loop of my street, which is a climb. I may go walking today, still, but maybe on a trail. I feel better when I am out there (mentally), but it doesn't do much once I get back.
    Margo, my family is weird. Since my mom died, I realy don't have much to do with them. And, when we got home from lunch, I had a message from my aunt. I told her I hadn't called her back because I didn't like the hateful political message she left on my voice mail when she was wishing me Shana Tova a couple of weeks ago (a real contradiction, wouldn't you say?). I gave her a brief run down of what was going on and then said i would call her when i had more info.

  11. #26
    Join Date
    Apr 2007
    Location
    Limbo
    Posts
    8,769
    Robyn, I have a thyroid ultrasound scheduled for next Wednesday. For some reason i just don't worry about things. That's my personality. If it's ok, then good for me. if not, I'll do what I gotta do.

    People deal with things in their own way but try to relax somehow. all that stress and worry only raises your cortisol (and other hormone) levels.
    2008 Trek FX 7.2/Terry Cite X
    2009 Jamis Aurora/Brooks B-68
    2010 Trek FX 7.6 WSD/stock bontrager

  12. #27
    Join Date
    Oct 2006
    Location
    Arlington, VA
    Posts
    1,071
    Robyn --- Nothing helpful to add in terms of advice. I will, however, say a couple prayers for you and will send lots of good thoughts your way. Try to think positive and realize that you have a lot of folks who care about you.

    FWIW, I understand about the family. Same thing happened when my dad died in '05 (my mom's been gone since '01). Although I have three siblings, I'm in very limited contact w/only my younger brother. The other two, forget it. It's sad, but for me, it's for the best.

  13. #28
    Join Date
    Apr 2007
    Location
    Limbo
    Posts
    8,769
    Quote Originally Posted by Velobambina View Post
    Although I have three siblings, I'm in very limited contact w/only my younger brother. The other two, forget it. It's sad, but for me, it's for the best.
    There are more than a few of us here who are "orphans".
    2008 Trek FX 7.2/Terry Cite X
    2009 Jamis Aurora/Brooks B-68
    2010 Trek FX 7.6 WSD/stock bontrager

  14. #29
    Join Date
    Feb 2005
    Location
    Concord, MA
    Posts
    13,394

    Update

    OK, I just got back from the endo, a very nice woman. I made Steve come with me, for an extra pair of ears. Basically, after reading the report and examining me, she told me the following: 1) 50% of women over 50 have nodules on their thyroid 2) if the nodules are less than 2 cm they are too small to biopsy as they would not be able to get enough tissue (both of mine are smaller). So the plan is to have another ultra sound in 6 months to see if they have changed and if not, then have one once a year.

    She did listen to my whole medical saga and I got a stern "you are extremely anxious" and that i should consider meds. I told her that was out of the question that I ride to reduce my stress, so she said to consider yoga. I did a lot of yoga for cyclists at home last winter and spring, which I really liked, but when I went to a class at the health club, I hated it. I am not much for "spiritual" stuff, chanting, etc. I mean i'm not too spiritual even when i go to synagogue. But, I will try again since it is boring to do it alone most of the time, even though I have 3 different dvds.

    So, tomorrow I go to the GI doc. I have a few concerns there, will bring up the celieac (sp.) thing and discuss my reduced appetite (which is improving), the fact that I am still losing weight, and some pain in my buttock area (a pain in the a$$?).I am sure I will be hyper focusing on that for the next 24 hours! I already have a colonoscopy scheduled for Nov. After tomorrow, I only have to go back to get all of my results from the rheumo. on the 15th.
    Thanks again, everyone for your support. I have come to the conclusion that maybe I shouldn't have stopped working. But, so far I haven't felt good enough to go out and ride the way i had planned to.
    We might actually go away for 3 days next week, to make up a little for our cancelled vacation.

  15. #30
    Join Date
    Jul 2007
    Location
    foothills of the Ozarks aka Tornado Alley
    Posts
    4,193
    Robyn, I hope you can find a relaxing, tranquil and peaceful vacation. I am sorry you are having to battle so much. I am keeping you close in my thoughts and prayers.

 

 

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