Life with Autoimmune Diseases & Chronic Illnesses

Fibromyalgia: Does Your Family ‘Get It?’

heathersday:

 

It’s an exhausting, debilitating condition, but fibromyalgia can feel even worse if your family doesn’t support you. You can turn them around by helping them better understand what you’re experiencing.

By Marie SuszynskiMedically reviewed by Niya Jones, MD, MPH

Having fibromyalgia is usually a life-altering condition — in fact, a survey of more than 3,000 people living with fibromyalgia and other chronic pain conditions by the American Pain Foundation and the National Fibromyalgia Association found that nearly 90 percent don’t feel like the person they used to be. And because of this pain, 63 percent said they need to ask for help from family and friends to accomplish daily activities.

But what happens when your family isn’t supportive? You might feel as if you can’t ask for the fibromyalgia support you so desperately need.

Some people have treated fibromyalgia as if it’s not a real disease, says Jacob Teitelbaum, MD, the Kona, Hawaii-based author of From Fatigued to Fantastic! and medical director of the Fibromyalgia and Fatigue Centers, Inc.

But it is a real disease with very real symptoms. Gaining support from family members who just don’t “get it” or aren’t as supportive as they could be starts with being a good communicator.

Fibromyalgia Pain: How to Help Your Family Understand

It’s difficult for someone who doesn’t have chronic pain to imagine what living with fibromyalgia is like. Here’s how you might approach a conversation about what you’re going through.

• Dispel their doubts. Educate your family about fibromyalgia with information from respected experts and institutions, such as the National Institute of Arthritis and Musculoskeletal and Skin Diseases (which states that more than 5 million people in the United States live with the syndrome).
• Explain that fibro is like blowing a fuse. Tell your family members that fibromyalgia is like an energy crisis: You use more energy than your body can make, Dr. Teitelbaum says. “You’ve gotten to the point where you’ve blown a fuse,” he adds. 
  
  Another way to help people understand fibromyalgia pain is to tell them it’s like having the flu every day, including feeling achy,fatigued, and foggy. 
  
  Let family members know, however, that you’re doing what you can to beat fibromyalgia pain and to make yourself feel better. It’s what Teitelbaum calls SHINE: getting enough Sleep, gettingHormone treatment if you need it, treating Infections as soon as they occur, taking Nutrition supplements, and Exercising as you’re able to. Letting your family members know about this strategy will help them understand how to help you feel better.
• Explain about the need to listen to your body. An unfortunate part of living with fibromyalgia is that you often won’t know if you’re capable of doing something ahead of time, Teitelbaum says. It’s common for people to have to wait until the last minute before they know if they can participate in an activity or if they need help. Explain to your family that this is part of life for people who live with fibromyalgia, but that you’ll do everything you can on the days that you feel up to it.

Three Steps to Getting Fibromyalgia Support

As you prepare to ask for help, know that three things need to happen for fibromyalgia support to go smoothly:

• People with fibromyalgia need to be able to ask for help. You need help just like anyone else who has an illness, so don’t shy away from asking. The best way to ask for help is to be specific about what you need, such as asking someone to make dinner so you can have time to recharge.
• Family members need to be able to answer yes or no. As much as you may need help, your family members should be able to offer a helping hand without becoming exhausted themselves. “Family members and caregivers need to be able to say no when they don’t feel like helping,” Teitelbaum says. “Otherwise they’re going to burn out.”
• People with fibromyalgia need to be able to accept an honest answer from loved ones.Accepting help can be a relief, and you should take it when family members are willing. But it’s also important to accept a “no” from a relative who may be feeling overwhelmed.

Following these steps will help you garner support from friends and family now and into the future. When you have support from loved ones, living with fibromyalgia will be easier.

Up, down, up, down, up, down

n-morgan

Wednesday, October 19, 2011

No that isn’t a seesaw. That’s my internal body temperature - thank-you-Femara (or what ever its generic name is these days). I asked my oncologist about it. Most people get hot flashes. I don’t. It gave me the inability to regulate my body temperature. This means I can go from normal to boiling hot to freezing cold and back in the space of about five minutes without moving or changing anything or turning a fan on and off.

I am overjoyed to be coping with such a minor side effect (not) in that at least I am not freezing cold all the time. My husband tells me I am a lizard because I am always cold. I tell him when I married him his job was to keep me warm. But now, I bounce wildly from one end of the temperature spectrum to the other. An example is yesterday afternoon I was driving home I alternately had the heat on, the AC on and the window open. That was in a 30 minute time period.

But in the spectrum of cancer side effects this is relatively mild and I only have another 15 months to cope with it. That’s okay, its getting progressively worse as time goes on. By then I’m sure I’ll be vacillating between the South Pole and a preheated oven. I can’t wait.

But one thing I can wait for is my lovely day I have scheduled. I will get off my lazy but and go to the gym in pursuit of deflabbiness. After that I have a quick meeting and then will come home and attempt to productively work from home before I have a medical misadventure scheduled. Another needle under my knee cap. Now I know its not that bad. I had the other knee done in June and it was relatively pain free. I did have a lot of pressure in my knee after and had to sit there for twenty minutes to make sure I wouldn’t pass out or something. Its just the idea of a needle under my knee cap. Ick! Its like fingernails on the blackboard.

When was the last time you saw a blackboard anyway? They have gone to obsolescence. Generations of children will grow up unable to irritate their classmates by running their fingernails down the black board. But I digress. Both the ideas of fingernails on the blackboard and needles under the knee cap make my spine tingle.

But I digress. I will take my over/underheated body to deflab at the gym. Later I will approach my needle misadventure with my inner wimp (who is accompanied by my inner size six person) by telling them about my needle phobia and they will attempt to distract me (which they are pretty good at) and I will plan on spending 20 minutes with a book on ice before proceeding back home. I can be such a wimp at times. But I have learned to put my wimpiness to good use.

Posted by Caroline at 6:20 AM

Source

Some links to helpful sites

extra-baggage:

INFO:

United Ostomy Associations- http://www.ostomy.org/

IDEAS- http://www.weneedideas.com/

Uncover Ostomy- http://uncoverostomy.com/

PRODUCT:

Clothes- http://www.whiterosecollection.com/

http://ibdcrohns.about.com/od/ostomyinformation/a/ostomydressing.htm

~*~Intimate Wear~*~ (with squiggles because I act 9 years old sometimes)-

http://www.wearclose.com/ostomy_primera.html

http://www.intimatemomentsapparel.com/

http://www.ostomyconfidence.com/products.htm

Supplies- http://www.ostomy.org/ostomy_info/suppliers.shtml

http://www.coloplast.com/Pages/home.aspx

http://www.hollister.com/

http://www.convatec.com/en/cvtus-homeus/cvt-home/0/home/399/393/0/default.html

http://stomocur.com/index2_us.htm

http://www.genairex.com/

http://nu-hope.com/

SUPPORT:

http://www.healingwell.com/community/default.aspx?f=33

http://www.ostomysupport.org/

http://ostomyland.com/mainsite/

https://www.ostomy.org/forum/index.php

http://www.meetanostomate.com/index.php?page=index_new

If you guys have any to suggest, let me know!

Doctors out of context

n-morgan

Thursday, September 22, 2011

I expect to see my doctor in a nice little exam room where I am the patient and they are the doctor. When I see the out of context, meaning out of an exam room, I am little put off. First of all, do they even recognize me and know my name when they don’t have my file in their hand? They have hundreds of patients and I am not sure my newer doctors do know me in the blur of the patient roster without a little prompt.

But I always recognize my doctors. A few weeks ago I was at my PCP’s nurse practitioner about my shoulder. When I walked into the waiting room, my PCP was walking out. I said hello and she said hello back. but I’m not sure she knew who I was. I was just a little startled to have someone coming out the door I was going in simultaneously as it was an ‘excuse me’ situation.

When I was looking for a new PCP last year, there is one doctor I ruled out automatically. She is the sister in law of a friend of mine. I have been to parties with her. I have always thought of her husband as my friend’s hunky older brother. I don’t think I want a doctor who I think of more as a friend. I know some people are friends with their doctors. Not me.

I belong to a monthly breast cancer support group at the hospital where I am treated. They often have a speaker come in - usually a physician or nutritionist, etc. But next month the speaker is my oncologist who is coming to talk about women’s health issues. I just saw her a couple of weeks ago and am not sure I want to be in a discussion group situation with her. I can never keep my mouth shut in the first place and I want my conversations with her to be more one on one. I am not sure I feel comfortable enough to attend.

Then later in October is a free seminar at the hospital on the ‘Promising Future of Cancer Care’. I am attending for several reasons - its free, the keynote speaker is Dr. Susan Love (and I have always wanted to hear more from her), they will have hors d’oeuvres after (and snacks are always good), and they will have speakers on several types of cancer - breast, lung, colorectal, head and neck, and prostate - and might even have some promising news for those of us in the two cancer category, and I always want to hear good news in regard to cancer care. If they can offer me more in the future, I am happy.

But the speakers are their oncologists. So I assume my oncologist will be there and possibly some of my other doctors. I think I can handle this as it will be a group situation.

I just always feel weird when I see my doctors out of context.

Posted by Caroline at 6:37 AM

Caroline’s Breast Cancer Blog

Calling All Lupus Patients, Reblog if you have Lupus.

elizarianez:

 Any type of Lupus. I feel like we need to unite a bit more so I’m gonna follow you if you reblog. I’ll listen to you if you listen to me and we’ll support each other. I know that I need it so much right now.

(via autoimmunelife)

To all followers:

I know all of you are going through your own rough journeys right now but I would kindly ask that all of us keep mylifewithlupus in our thoughts and prayers right now, as she is having a particularly rough go of it right now. If you don’t follow her blog, she is in the hospital with a very, very bad flare of lupus and she’s feeling a bit down and in a tremendous amount of pain and her body just does not want to cooperate with her at all.
Please, if everyone could, take a couple minutes and send her some warm words of encouragement.
We hope you start feeling better very soon Ashley and that you’re out of that hospital and off the chemo ASAP!
Best of luck, lots of love,
Em & livingwithautoimmune