Archive for the ‘Fibromyalgia’ Category

Psychscribe Quote #57

March 27, 2009

©www.clipart.com 2008

 

“If you watch how nature deals with adversity, continually renewing itself, you can’t help but learn”  Bernie Siegel

Doctor Knows Best

March 2, 2009

Lupus vs Fibromyalgia Symptoms?

December 28, 2008

You know, from what I’ve read, there is much similarity in symptoms of lupus and fibro flares.  I’ve been diagnosed with both, so I find it confusing to know which is which when I’m flaring. My doctor, quite honestly and to his integrity, I might add, also finds it to be confusing.

Would you mind  identifying your diagnosis and symptoms? I will then compile them and make a front page, unifying post out of your comments. Then you, me, and everyone else who suffers from these diseases can benefit from your input.

Thank you.

Psychscribe Quote # 48

December 16, 2008

 

Image from www.globalcollage.com

rain

 

“Life isn’t about how to survive the storm, but how to dance in the rain.” Author unknown.

CALLING ALL RACIAL MINORITIES! No New Lupus Drug in HALF A CENTURY???!!!!!

December 3, 2008

What does “No New Lupus Drug in 50 Years” mean to you? Do you have lupus? Do you love someone with it? Did you love someone you lost to lupus?  What can you do?

And WHY has there been such a shameful lack of research??? Interesting that the majority of victims are minority women…blacks, Asians, Hispanics…. I can’t help wondering how much faster they’d be moving if the majority of victims were white, upper class men… The YouTube I’ve inserted here talks all about the difficulties of research due to the complexity of the disease and the genetic variations of the patients. But still…you have to wonder…

The Lupus Foundation of America invites you to share your story with Congress. FIGHT for more money for research!

Share photos, personal stories, put faces and details on the stats they don’t even have.

God helps those who help themselves. LET’S ALL DO IT! LET’S FIGHT FOR OURSELVES! Go to the LFA  website (link below) for details on how to make your voice be heard in Congress.

I know I will.  C’mon guys. We are all we have. Lets stick together and do this together. Look what Rosa Parks, one woman, was able to accomplish with a single act.

From the LFA Website:

November 20, 2008 marked the 50th anniversary of the last time the U.S. Food and Drug Administration (FDA) approved a treatment for lupus. Lupus Foundation of America (LFA) Medical Director Dr. Joan Merrill and LFA Medical-Scientific Advisory Council Chair Dr. Gary Gilkeson discuss this urgent issue and what LFA has been doing to bring down barriers to lupus drug development.

Homeopathic Medicine? or Scam?

November 28, 2008

Here are the facts of my recent consult. I would really like to know what you think or have experienced, positive or negative, in this area of medicine.

I wanted to try alternative medicine for my lupus since there doesn’t seem to be anything else to try except for chemo which I don’t want to do. I can still function and work and don’t want to live my life around that. I called this particular doctor of osteopathy because I heard he’d really helped a women with lupus for the past 20 years. He’s  in practice with his son,  a tech. First I met with the doctor, who spent over an hour taking a very comprehensive history.  He said traditional medicine teaches doctors to start with the symptoms, come to a diagnosis, and then treat the symptoms.  He explained that what he does is different in that he looks further back to the causes of the disease and starts his treatment there. Ok….sounded reasonable. He took quite a few vials of blood.

The next step was to go downstairs to his son and get tested for the causes. With blind faith I went, not even asking about what the procedure entailed. What it turned out to be was three hours of testing using some kind of probe on the meridians of my fingers which produced computerized data for his father. (For the uninitiated, meridians are the energy fields used in accupuncture.) This cost $550. and was not covered by insurance.

I then went back to the doctor at a later date for the results. The blood tests were unremarkable. But  the computerized meridian tests indicated all sorts of parasites, bacteria, viruses, low functioning adrenals, and lymes disease which I have apparently had for at least 8 years. I have been tested many times by my rheumatologist for lymes and adrenal functioning but he and his son explained the test was for “stealth” organisms which hide by embedding in the organs and escaping detection of traditional medical tests….He said that the hidden stealth organisms are what cause the autoimmune system to attack the body. 

He offered an eight month treatment plan, to the tune of several thousand dollars, none of which is covered by insurance. To start with, animal stem cell injections. Then various kits from his son with herbal remedies which would definitely help my immune system. I reminded him I’d come in for help with lupus and he said, “Oh? IS it lupus?” He suggested I not tell my regular medical doctor about the treatment since they’re so skeptical of alternative medicine, and then let him be surprised after the treatment with the improvement in my health and THEN tell him how I’d gotten better. (Ok, even as I write that I am embarrassed…what BAD medicine it is to NOT practice coordination of care!)

So now I finally decided to do some research (duh) and I find out that homeopathic remedies are so diluted that basically there is nothing of the original “essence” left by they time you take it. Lots of talk by traditional medicine of no research, just placebo effect. 

Responses, anyone? I would so appreciate them….

Baby Laughing at Wii

November 7, 2008

Ok, this may be a sign of my obsession with wanting a grandchild, but I ask you….can you watch this and NOT laugh just hearing him? I hope this brings a smile, or a laugh, to you today.

 

Being Thankful for Chronic Illness

November 4, 2008

I am rushing off to work right now, so thankful to be in remission these last few weeks. But I read an essay called Being Thankful at But You Don’t Look Sick  which I’d really like to share.  Enjoy your day.

Lupus News

October 31, 2008

Headlines from the  Lupus Foundation of America :

 

“Congress Reaffirms Support and Continues Funding For Lupus Research, Education and Patient Registry

Congress has again provided funding for critically important lupus research and education programs advocated by the Lupus Foundation of America.  President Bush recently signed the Consolidated Security, Disaster Assistance, and Continuing Appropriations Act of 2009 (H.R. 2638).  This legislation continues funding for important lupus programs, including basic, clinical and epidemiological research, and public education and awareness initiatives.
Read more >>>


Fluorescent Light Bulbs and People with Lupus  

 

Some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus. Are you one of the people affected by fluorescent light bulbs? Please share your story with us atadvocacy@lupus.org.


Save the Date for Advocacy Day 2009 — March 2-3, 2009!  

 

The Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill will take place March 2-3, 2009! Mark your calendars today!

In 2008, more than 300 people with lupus, their families, and health professionals visited with Members of Congress, and asked them to increase government funding for lupus medical research and to enact legislation that will greatly expand federal efforts on lupus.
Read what others had to say about Advocacy Day 2008.


Sign up to be an e-Advocate for the Lupus Foundation of America  

 

LFA e-Advocates are an important group of lupus activists who stand ready to spring into action when called upon. Our e-Advocates will respond to legislative alerts by contacting their federal or state elected officials to educate them on issues of critical importance to people with lupus, their families and health professionals.
Sign up today.”


 



 


The Present for You

October 17, 2008

 

Here is a present for you:

Focus solely on the present below, thinking of nothing else but the image of that present…the colors….the shapes…focus for as long as you can…and then, when you’re ready, open the present and see what you find…

 

 

In  doing this exercise you are already practicing being present…experiencing peace and release from worries about tomorrow.

What did you find when you opened your present?

Knowledge is Power

September 30, 2008

I liked this article about being an empowered patient in today’s New York Times. Its nice to know that times are changing, where the “good patient” is not necessarily the passive, compliant one

 

 

Sometimes a Cigar is Just a Cigar

September 30, 2008

Ok…so…how embarrassing is this? For two weeks now I’ve been blaming my aches, pains, weakness and malaise on my “lupus flare”. I mean, it has felt the same as it always does, plus factor in the wedding and attendant stresses and of course its a flare, right?

Wrong. I’ve been noticing I have sniffles and a sore throat..then it occurred to me that back in the old days, 4 years ago, before I knew I had lupus, I used to get flu like symptoms every fall and spring. I mean I always felt  REALLY sick. Only now, ever since I was diagnosed with lupus, I think that every single ache and pain I ever get is a lupus thing.

Well, the rest of the story is obvious from my title. Today I dimly remembered how I used to feel, pre-lupus, so I  tried my favorite allergy medication and it worked like a charm. I feel like a new woman! Hear me roar, everyone!

So, this supports Freud’s famous line…sometimes flu like symptoms are just…flu like symptoms…

Psychscribe Quote #41

September 28, 2008

Copyright Jupiter Images 2008

 

“We are not human beings having a
spiritual experience. We are spiritual beings having a 
human
experience
” (Pierre Teilhard de Chardin).

Psychscribe Quote #39

July 27, 2008

Perhaps we are like race horses – one of the old traditions was to ‘handicap’ the greatest horses so that they would not run away from the pack. They would pile on lead weights, whatever was needed to get up to the amount of weight the handicapper said they should carry. We’re handicapped because otherwise the world could not keep up with us.” Anonymous

No Posts Lately – Sorry

July 27, 2008

 

Copyright 2008 Jupiter Images

Copyright 2008 Jupiter Images

Chronic illness can have an effect on even the strongest relationships…So Alph and I are going through some tough times right now…causing me to be too depressed to write…anyway, thanks for still checking in and I will be back soon I hope….

When Mother of the Bride is Ill

July 18, 2008

Yup, that’s been my title for the past year or so, since we began planning my daughter’s wedding. We’ve been planning the fairy tale since she was a little girl, and so excited to get started once she got engaged. Also, for the past year, my lupus has been getting worse. More work obligations cancelled. More social plans cancelled. More pain. More bed.  I cannot make any commitments. Everything is tentative. Living a tentative life is stressful, and stress makes lupus worse.

We are coming down the wire here and I only pray that I will get a remission in time for the September wedding.  I’ve already had to disappoint her, and me, by  canceling some plans with her. It looks like today will be another one, since I’m in a lot of pain though fighting it. We are supposed to go for her first bridal fitting, and also to a make up trial. This is supposed to be a fun  thing that moms and daughters do together.  I feel so terrible, terrible, terrible to have to disappoint her (and me) again.

I try to tell myself its all in my mind, but its not. Its in my bones and in my foggy brain. Yesterday, I had to ask my sister to drive me to the pharmacy and to the lab for a blood draw. I NEVER ask people for help…yet today I am actually considering driving up to my daughter’s to do what we had planned. I simply cannot bear to disappoint her…

But then I think, I almost died four years ago when I had my stroke. And  I think, one of her oldest friends lost her mother to cancer just two months before the wedding. Can you imagine how sad that was? So then I think, we’re fortunate that I’m alive and able to share the wedding experience with her, albeit at a distance.  And as my father used to say, you have to roll with the punches….

Abuse & Disease: A New Spin

July 1, 2008

Chronic illness feels like an abusive relationship. I should know, I was in one. 

I only just made this analogy  yesterday. A friend was talking about a controlling relationship which her daughter, M.,  is stuck with until M.’s child turns 18. Every time she gets thru one crisis with the father of her child, who feeds on her angst like a shark feeds on a flailing, tasty human, calm returns and for a while she feels some semblance of normalcy.  

She goes on living as if no further emotional assault will occur, and is truly re-traumatized each and every time.  How could this be happening again????…..the raging powerlessness I know she feels as he uses their child as a pawn between them, a pawn in a game she cannot win.

She will not use Solomon’s sword. He would.

Jump back to me, stuck in bed again with my lupus flare. Like it or not, stuck with it. My body, my life, my work, my marriage,  my family –  all affected by this nasty disease. Assaulted by it.  And I feel powerless, and furious…. so furious….  a  raging powerlessness in a fight I cannot win. A fight which will probably kill me. An abusive relationship doesn’t get much worse than that.

And then I feel better again, a semblance of normalcy is restored (key word semblance) , until the next assault by the disease.  At which point I feel shocked and traumatized that the flare has flattened me again.  Just like M. feels. 

There’s nothing we can do about it, right? 

Wrong, actually. I heard myself advising M.’s mom that M. needs to accept that it is what it is. He will never change. His tactics will never change. I would imagine any boxer would tell you its the punch they didn’t see coming that knocked them out.  So…umm…when are M. and I going to admit to ourselves that she had a child with a power and control freak, and I have a very serious medical condition which does not go away just because I get remissions? 

What we both need to do is to see it coming, know its coming, but accept the breaks in between with  the grace,  joy and  wisdom to appreciate the present.  When you know its coming you can have a back up plan. For her it might be disengaging from his game and gathering  the support she needs. Not to detail her victimization but to go out with her friends for a good time,  or treat herself to a day at the spa. It won’t change a blessed thing about the situation, but regardless of whether she suffers or pampers herself while he does his thing- nothing else will change. So since it is what it is, I vote for pampering at such times. Nurturing herself rather than berate herself because she can’t win.

So, as is often the case, in giving my friend advice I gave it to myself. I stopped fighting this flare today and accepted the reality that I need to take a week off from work even though  I HATE canceling clients. I decided to take advantage of the abusive (insert your favorite curse word here) lupus and treat myself. I mean, just because I can’t go to work doesn’t mean I can’t work on my hobbies which I never have enough time for.  I can decoupage, make jewelry, plan craft projects, read, watch movies, all from the comfort of my nice snuggy bed.  It won’t change anything, but…to tell you the truth… I am actually looking forward to my week off now… 

It is what it is.  😉

 

 

Illness Caused by Stress? Or Not….?

June 29, 2008

I just found this artifact of life before computers on www.stressrelatedillness.com.. Makes a good lead in for what I’ve got for you today: an interesting, tongue in cheek essay that you might enjoy too, in todays’ New York Times Magazine. I guess this means I’m emerging from my murderous funk: 

 The Way We Live Now by Peggy Orenstein

I don’t FEEL like counting my blessings

June 27, 2008

I think I do count them frequently on my blog, but today is not one of those days. I’m down with a flare again. I’m in pain which the pain killers dull but do not eradicate. Had to cancel plans  with my sister, my son, and my daughter. I was really looking forward to them. I realize I did just count three blessings, but you know what I mean. Please don’t anyone point my blessings out to me by way of comment because I will have to ban you from my blog. I mean, what would

 

Copyright Jupiter Images 2008

 

 I do with all this anger????? And if anyone asks me what advice do you give your clients, they are also banned from my blog. Is anyone out there having as bad a day as I am? 

I can’t believe you read this far. 

Psychscribe Quote # 36

June 19, 2008

Love is what you’ve been through with somebody. James Thurber

 

Save Money on Rx Drugs

May 7, 2008

I just read an article on abc news that is worth looking at. They talk about a Consumer Reports analysis of the huge differences in prices for the same rx drugs in different states and even in different pharmacies within your state. Overall they found Costco to be the least expensive, and Rite Aid to be the most expensive. They also recommend independent pharmacies, which I was pleased to see since my sister owns one! Also, if you can’t afford your meds, or are strapped, most pharmaceutical companies have programs to help. All you have to do is call and ask if you qualify. Anyway, I hope this helps someone.

Fibromyalgia as Symptom of Hypothyroidism

May 4, 2008

Flowers for You

May 1, 2008

(c) (2008) Jupiter Images Corporation

I’m just wondering…. when was the last time you sent flowers to someone that you love?

Why the Worst Thing That Ever Happened to Me is the Best Thing That Ever Happened to Me

April 15, 2008

I had a major stroke in Dec. 2004 at the age of 52.  I could, should have died or been severely impaired. Instead, I have all of my functioning intact except for occaisional glitches finding words.  It was truly a miracle. There were so many people praying for me.

It was the best thing that ever happened to me because:

1. Eventually they figured out that I had lupus, which caused the stroke, and I am now being closely monitored and treated.

2. My husband and I decided that it was time to stop putting off my life’s dreams because if you wait too long you may never realize them. So since my dream was to go into private practice (psychotherapy) with my daughter, we left a state we hated living in and moved  two states away to be near her to open the practice. Working with my daughter is one of the biggest joys of my life.

3. We then, most unexpectedly, bought a lovely, perfect for us weekend/retirement house around the corner from my sister (who found it for us). My only sister and I had always had a conflicted relationship. But after the stroke, and moving near her, she is now my dearest friend and I love her with all my heart. Actually, it wasn’t until the stroke that I understood how much she loved me.

4. I have reconnected with other dear friends who live in this area.

5. I learned the true character of the man that I love, which I’ve also learned you only really know when the chips are REALLY down.

6. I’ve learned to allow myself play time.  Doing something for the process, not the result. Enjoying being in the moment of creation. For me that is decoupage. Sometimes the products are lovely, sometimes not. Doesn’t matter! Also have allowed myself to read novels, which don’t teach me anything but which I thoroughly enjoy. I guess you could say basically I’m allowing myself to enjoy.

7. I’ve learned that it is really quite lovely to feel so nurtured and cared for by so many people in my life…that used to be my job…

I’m sure there is more, but you get the idea.  Enjoy your day! Well, actually that is one more. I’ve learned to enjoy every moment of work and play because I appreciate that I’m here to do so!

Blessings to all,

Psychscribe

What Goes Up Must Come Down…

April 9, 2008

Well, I raised hell for two days and paid for it for three days – still, it was worth it. As the lupus Spoon Lady has already explained, we Lupies are allotted only a certain amount of spoons per day. We never know how many. Sometimes we can borrow from tomorrow’s spoons, but eventually we find our stash empty and need to sleep while new ones morph back into our bodies…