Comments for Bee's eclectic life

Comment on Fibromyalgia Article in Woman’s Day Magazine by sandrar

sandrar — Thu, 10 Sep 2009 23:21:53 +0000

Hi! I was surfing and found your blog post… nice! I love your blog. Cheers! Sandra. R.

Comment on Too Tired to Write by sandrar

sandrar — Thu, 10 Sep 2009 14:43:25 +0000

Hi! I was surfing and found your blog post… nice! I love your blog. Cheers! Sandra. R.

Comment on My fibromyalgia history by Amy

Amy — Wed, 26 Aug 2009 06:35:44 +0000

Someone on another site referred me to this blog. I’m so glad I read it. You did a wonderful job on the research. I really appreciate your making this available online. Your symptoms are so similar to my FM symptoms, too.

Comment on Fibromyalgia/Lyrica Commercial #3 by Carol

Carol — Mon, 24 Aug 2009 22:10:40 +0000

To Samantha,

I just Googled your question (TV commercial showing woman with bruises) and found what you were seeking. pharmamkting dot blogspot dot com/ 2008/06/ battered-woman -imagery-in- pfizers-new dot html. The link wouldn’t print so I have tried it again using the word dot and left spaces. I hope you can follow my code and find the link.

As far as correct information, please look at the Fibromyalgia.com sites. There are now many. There is even a social part of eBay called Groups in the Community area, where people chat about various topics. The Auto Immune Diseases Support Group, where I am an active member, does discusses Fibromyalgia. A person does not have to sell or buy on eBay to become a member of or start any eBay Group. Although much time has elapsed, I hope information this helps you or someone else reading this.

Gentle hugs to my Fibro friends,
Carol

Comment on Fibromyalgia/Lyrica Commercial #3 by Carol

Carol — Mon, 24 Aug 2009 22:09:35 +0000

To Samantha,

I just Googled your question (TV commercial showing woman with bruised) and found what you were seeking. pharmamkting dot blogspot dot com/ 2008/06/ battered-woman -imagery-in- pfizers-new dot html. The link wouldn’t print so I have tried it again using the word dot and left spaces. I hope you can follow my code and find the link.

Gentle hugs to my Fibro friends,
Carol

Comment on Fibromyalgia/Lyrica Commercial #3 by Carol

Carol — Mon, 24 Aug 2009 22:05:38 +0000

To Samantha,

I just Googled your question and found what you were seeking. .

Gentle hugs to my Fibro friends,
Carol

Comment on Fibromyalgia/Lyrica Commercial #3 by Carol

Carol — Mon, 24 Aug 2009 21:51:19 +0000

That Lyrica commercial causes me such mental anguish! It has more warnings than information and what they try for information is absolutely not correct. I have had Fibromyalgia for 25 years and never heard such a statement as made in that commercial about “doctors say that Fibromyalgia is thought to be caused by the over use of muscles.” Bologna! That’s just so far from the truth. Maybe one doctor, but to speak as it is a consensus is misleading. Fibromyalgia is not just about muscles!!! No one knows exactly the what’s or why’s of Fibromyalgia, there are many ideas, none yet firmly founded. That statement should be clarified should be in the commercial and not so misleading. It’s no wonder no one recognizes that we are in real pain with misinformation publicized.

I was told 20+ years ago that Fibro (Fibromyalgia) was caused by some type virus activating or awakening a latent Fibromyalgia gene. (I know that I had a small virus hit when I was babysitting 15 children, ages 2-11, in my home full time for two months. I earned that disease from lack of sleep and a proper diet.) I was also told that I lost the chemical in my brain that would put me into the deepest form of sleep that allows the body to regenerate. That’s why we sleep, to regenerate. That makes sense to me. If I can’t sleep deeply then it means that my body is on awake mode day and night. It’s no wonder I would hurt.

According to the internet, Fibro is magnified pain affecting the body many in different ways. (I personally describe it as “bone crunching pain” because the pain is not always in muscles or joints.”) Then there should be a link to more information. That information should discuss the trigger points, sleep, fatigue, exhaustion, fibro fog, etc. the list goes on and on, as we who have this disease know for certain.

The bit: “If you think that you have Fibromyalgia, ask your doctor for Lyrica”. NO! It should state,”If you think that you have Fibromyalgia ask your doctor for more details.” Then ask about Lyrica. Has anyone noticed that in the commercial at one point she reaches for a white cupcake or muffin? We all know that there are no white foods on the Fibromyalgia diet. I have to turn the station when that irritation airs. Lyrica is also just one of many medications for Fibromyalgia. It’s just the first US. approved medication since Fibromyalgia became classed as a disease from the World Council of Pain who met in Europe in 2000. Only once classified as a disease, medical research and drug companies can legally allocate money, as is allowed by US law. Let us remember and remind others that Fibromyalgia is not a syndrome, but a disease and the distinction rightly earned.

How sad that Fibromyalgia has been around since Biblical days and only in 2000 it became available for funding. (Well better then than never.) It’s my belief that it only became more in public view now that more woman are in the workplace. Although it mainly attacks woman, it can be found in men and children, anyone of any age. We must also remember that all drugs have side affects. Each individual must try and use what works for their own bodies. As for myself, I’m still waiting for

Comment on Apartments and Asperger’s by eclecticwoman

eclecticwoman — Tue, 09 Jun 2009 18:15:22 +0000

Carol Lynn,
A support group is good but it isn’t everything. I belong to the Asperger’s Assn of New England but I don’t attend meetings. I use their web site, which I have a link for here, for information and direction.
My son was 19 and away at college when he was finally diagnosed. To get onto SS Disability wasn’t difficult. It was tedious, time consuming and frustrating – the same as all goverment interaction. You need a specific diagnosis from a therapist, which it sounds like you must have. The forms can be downloaded online from the Social Security website. They also have helpful information for the process. Even if the first attempt is rejected, appeal. They get an awful lot of applications and I suspect some don’t get read carefully. You will want to have your son sign a document that allows them to speak with you as well as himself (legally they can’t speak with another person when it is an adult applying unless they have permission – privacy laws and all that.)
Massachusetts doesn’t have much for adults with AS. I don’t know what your state has. However, Mass does have a program with their Dept of Rehab that helps AS adults obtain and retain work positions.
You didn’t say what your son is studying, but I assume it is something that does not require a lot of “people contact.” You may want to look into employment that he can do from home. Today there are a lot more options because of the internet. You may also want to speak with the administration at his college. I know there is a tug-of-war we all feel about whether to disclose AS or not. I have found it has always been a good thing for us. All colleges are required by the ADA (Amer w/Disabilities Act) to make accessibility and assistance available to those with any kind of disability (visible or not) if the college receives any kind of federal funds (most do). If you can get your son to sign permission for the administration to discuss the matter with you, you may be able to arrange for them to contact you before okaying any changes in his course schedule, etc..
The hardest part is the work you have to do – the leg work, the paper work. We both know that although our children may be adults chronologically, they are still children when it comes to dealing with government, beaurocrats and rules they think are silly. My husband and I have often wondered how the government, for example, can expect some disabled persons to read and understand the forms they publish.
I can’t tell you that it is easy. It isn’t. But for every detour, roadblock or dead end, you may also run into assistance. That makes the effort worthwhile. Every person with AS is different. I will say that at every milestone, my son seemed behind – when he was 12, he acted 8; when he was 18, he acted 15; he is now 27 and in the years between 21 & 27 he has made great strides in handling himself in the outside world. The AS is not gone. He has learned how to cope with it better.
I wish you God’s blessings, which I believe can make amazing things happen.

Comment on Apartments and Asperger’s by Pop and Ice

Pop and Ice — Tue, 09 Jun 2009 04:18:17 +0000

I know it’s probably my own fault for not joining an Asperger’s Syndrome Support group, but my 20 year old son who is in local college is terrified of getting a job. And I hate pushing him because it causes him to fall apart in other ways which are bad, but I am worried that he is 20 and never had a job. This economy doesn’t help either.

I have seriously thought about disability but wasn’t sure how hard it was to get through the system to try to get him on disability since he *appears* perfectly fine. Except that he won’t answer the phone. Or call on the phone. Unless he knows who it is. How he can’t go shopping (too many people). Freaks out during certain classes and drops or fails without telling me, etc. etc. etc.

Any words of wisdom or can you point me to some assistance? Many thanks!

Carol Lynn
Pop and Ice

Comment on About by Ellen M.

Ellen M. — Thu, 07 May 2009 19:23:40 +0000

Hello!

This may come across as quite random, but I feel I may know you (possibly). I was browsing the internet amid a bout of boredom in the office, and began researching places to stay on the ‘Block this summer. I recall my father telling my sister and I a few years ago that the Surf was never again to be. I was incredibly upset, as this was an annual summer destination for my family while I was growing up (mid 90’s). I’m not sure if you were part of the crowd of folks that would return to the Surf Hotel the same week(s) every summer. Do you remember a woman named Sharon (I recall her having a son named Danny, whom always brought a friend named Ben), or a fellow named Roger (married with two daughters, one being named Elizabeth)? My father is Loren, and mother is Nancy. My father was known to play bocci on the hill with Paul and the gang, and we would both play Scat at night with the rest of the crew.

If you are not one of the people that my family and I grew to love and return to see every summer, I apologize for coming across as a crazy person! If you are, I’m glad to have come across your blog post! Please advise if I am simply jumping to conclusions based on one simple fact, or not. Hope you’re doing well, regardless.

Take care,

Ellen M.