#94 - Neurology Update

Okay... I am done sulking about my crummy appointment last week.

Here is the scoop about what is going on.

I was put immediately on a new migraine medication in an effort to break the unremitting migraine cycle.

The neurologist prescribed Frova to be taken twice daily for three days in a row.

And thus, I spent three days pretty much slunking from the couch to bed. That stuff made me dopey.

But, the Mabel the migraine monster seems to have exitted stage left. Hope she never comes back. Ptooey!

This Wednesday I have to go for an MRI of the brain. The doctor is going to compare my old MRI's with a new one to see if there are any changes.

I also am waiting to be scheduled for neuropsychological testing. This will be my second evaluation. The first one is considered a baseline. The doctors will see if there have been any cognitive changes since last time.

The neurologist fobbed off at the end of that dreadful appointment that my cognitive challenges could be due to depression and/ or anxiety.

Ahem... based on what diagnostic criteria?!!

I hate when doctors play mental health expert.

I don't meet the DSM IV criterion for depression or anxiety, but try telling that to an arrogant doc.

I didn't bother.

The plan, for now is to just get through the testing.

Afterwards, Hubby and I will be requesting a different neurologist from the same practice. We were informed by someone who has worked closely with this group that there is an excellent neurologist on staff.

If I am, given any problems about requesting a doctor switch I will not play nice.

TRANSLATION: I will contact my insurance company about my poor treatment from the neurologist last week (I have a witness and that neurologist has a reputation for being difficult). And I will contact whatever professional boards need contacting to file a complaint against him if they give me any problems.

ALWAYS REMEMBER: Your physicians work for you. Without you, they would not have a job.
Don't be intimidated...
and don't burn bridges.
If you are going to be confrontational with a physician make sure you have someplace else to go, and that you know the appropriate channels for handling a grievance.

In my case last week, I did not raise a fuss during the appointment.
I was way too upset, and shocked by the doctor's horrendous behavior.

Hubby and I took some time to think out an appropriate plan after tempers cooled off.

And there you have it.

Getting the old brain photographed this week.

Can we all say, CHEESE?"


RESOURCES:
Drugs and Treatments - WebMD with AOL Health Frova Oral - (Frova) - Patient Handout

#93 - Neurologist Etiquette

1. Be nice.

2. Be polite.

3. Don't scold.

4. Don't yell at your patient (especially in front of her husband).

5. Don't talk about your patient like she isn't in the room.

6. Don't dismiss your patients primary concerns.

7. Don't send your pateint off for a glob of testing without answering her questions.

8. And never ever change your patients medication regimen while stating that the new drug will make her "...feel stupid".
(I kid you not.)

Any questions?

I had a disastrous neurologist appointment yesterday.

Please make my day...

if you know any physicians...

send them a copy of this.

If they are a particularly grouchy physician...

staple gun it to their shirt.

'nuf said.

#92 - Parenting with Lupus: How to Have Fun

Here are some more suggestions for times when you are stuck in bed or on the couch:


1. Try tossing a small beach ball back and forth.

Little Bear and I have had some of our best belly laughs when I have been stuck laying on my side.

We enjoy buncing the beach ball off of each other.

We are also guilty of flinging stuffed animals.

2. Planned television viewing.

Pick out something together, cuddle up and giggle through the show.

For added closeness wrap one blanket around the two of you.

Too hot?

Lay on top of a shared blankie.

3. Have your child play on the floor near your face.

Younger children don't require you to do a dog and pony show to entertain them.

Children need you to WATCH.

They feel good when you are present and observing their play.

Play is the language of children... this is how they communicate their deepest feelings.

Your child will feel secure and loved, even if you have to be lying down to watch them play.

If your child does try to engage you in building blocks or whatever... and you really are too ill to join in, just tell your child that you love to watch them play... and that you are enjoying them with your eyes and heart.

4. Age appropriate tasks:

Younger children enjoy counting. Give your child something to count or sort... like 100 macaroni, or sorting the colors of Legoes.

Little Bear (age 7) is moving into the next developmental phase which includes a passion for collecting. He goes through sports cards and coin collections daily. I am able to be present with him while he organizes without being too fatigued from his activities. He likes to show-off his collections.

#91- Profiles in Lupus: Kathy Walters Pays It Forward

In the October of 2002, at the age of 44, Kathy Walters received a wake up call that would set her on an unexpected journey.

She was diagnosed with systemic lupus.

Kathy describes herself now as a homemaker, wife, mom, and grandmother. Before her health decline, Kathy was a small business owner in Modesto, California.

Full of energy and talent, Kathy has that enviable talent of being able to create without use of pattern. Confidence, and the vision to see what is not there now serves her well as she has been making a new life that can work around the lupus.

Before the lupus took center stage in Kathy’s life, she had found a way to make her passion for creating beautiful things into a livelihood. In the 1980’s, Kathy was the owner of The Country Peddlers Gift Shoppe.

Her online business, Mother Earth Gifts, was formed in 1999 as the fatigue from the as yet undiagnosed lupus took its toll on Kathy’s ability to continue working with the machinery used for her wood crafts.

And the lupus has robbed Kathy even of this online business.

Her world has been tipped askew.

Lupus has made Kathy adapt in ways she had never planned.

In the process of letting go, Kathy has created a safe harbor for those with lupus by creating the online community:

www.LupusMCTD.com

She calls her efforts “Paying it forward… giving back to lupus patients and their families.”

This is her story.

**********************************************************************
The first suspicions that something was seriously wrong with Kathy’s health occurred in April of 1975.

Kathy was only 16 years old.

She had convulsions which were described as having “unknown origins”. Kathy was started on anti-seizure medications, Dilantin and Phenobarbital.

During this disease onset, Kathy also suffered with high fevers and frequent bouts of pneumonia. She missed so much school that she did not graduate.

Kathy felt “ashamed and embarrassed” about this health problem. So when she met her future husband, Dave, she did not initially share with him her private struggles.

Dave soon learned quickly about Kathy’s health problems when Kathy had a grand mal seizure a month after they were married.

As usual with seizures, Kathy was “out of it” for the next four hours. When she came around, Dave was there. Kathy told him about the seizures and states:

“…he had tears in his eyes and said, ‘It was OK to tell me you had them [the seizures]. I love you for you and if that means I'd have to love your seizures, then I love them because it's a part of you."

Kathy and Dave have been married now for 30 years. And they became parents to a son and daughter.

Dave was very supportive of Kathy as her health gradually declined. She began suffering with the migraines and irritable bowel syndrome (IBS).
I had asked Kathy to talk about what it was like coping with IBS. This is a challenge for a number of us with lupus, but a condition that we so rarely discuss.

Kathy shared that her condition was so bad that she would need to pull over to the side of the road when traveling. Dave was sensitive and protective of Kathy. He would shield her so she would have privacy, provide tissues, and make sure she was okay. Dave was able to understand how embarrassing this was for Kathy. They learned to plan trips closer to home and to map out longer trips to make sure they could locate restrooms along the way.

The well known lupus fatigue hit Kathy when her children entered their middle school years. Dave became Kathy’s “voice” in advocating for her with doctors. Dave also helped Kathy by teaching the children to help out around the home, keep things quiet when she was seriously ill, and to protect their mother from stress that exacerbates lupus symptoms.

Kathy shared that her children quickly learned to adapt to Kathy’s worsening condition.

By Junior High, her children were able to recognize when Kathy was having a bad day and to adjust their after school plans accordingly. Her daughter would tell her friends “I’ll talk to you later.” Then both children would help by bringing Kathy 7UP, crackers, medication and a wet washcloth for her face. Kathy’s daughter volunteered to hold Kathy’s hair when the pain caused Kathy to vomit. Her son would close the curtains to the windows to keep the rooms comfortably dark.

(People with severe migraines suffer intense pain from loud noise and light.)

Kathy reports that :

“If I am sick, they [family] respond and do everything they can to help me to this day. But if I ‘look and act normal’ then we all live a normal live day at home.”

On the Path to a Lupus Diagnosis:

Kathy first realized that her health problems were serious in 1985.

Kathy’s beloved sister, Sheryl, died of Polymyositis. This is a condition frequently associated with Mixed Connective Tissue Disorder.

Polymyositis often overlaps autoimmune conditions such as lupus.

In her grief, Kathy turned to medical books to try to understand what had happened to her sister. Kathy’s fatigue increased significantly during this time.

Kathy’s migraines became unbearable and she had to make frequent trips to the Emergency Room. Her health problems were considered to be the result of “stress” or “hormone related”.

Kathy kept hearing the word “lupus” pop up.

Lab results showed nothing significant until 2002.

Kathy received a confirmed lupus diagnosis in October of that year due to her ANA lab results taken in conjunction with the other symptoms she had presented with over the years. Her neurologist and Primary Care Physician (PCP) finally agreed that she had been right all along.

And that is a long time to suffer through the humiliation of not being taken seriously by medical professionals.

So upon receiving the confirmed diagnosis, Kathy states:

“I was happy. I know this must sound strange to some, but I was so happy I called everyone. I was tired of trying to show and prove to Doctors what I had been living like; I just needed proof to them so I could get treatment to feel better.”

And thus explains Kathy’s deep empathy for those waiting for a confirmed diagnosis, and those with Mixed Connective Tissue Disease who may never receive a confirmed diagnosis.
But, having lupus is not easy.

And Kathy has shared that she misses the energetic woman she used to be. Kathy misses the ability to be able to help others by being physically present. Her illness has left her barely able to tend to her own household.

Kathy also misses the social contact of running her own business.
The computer has been Kathy’s life preserver as she has made her way in learning to cope with lupus.

Kathy has started creating her original designs on the computer. She has taken the patterns that she loved so much and is putting them together into a CD to share with others. She also has been making “Do It Yourself” sewing packets that come complete with the pattern and all the materials needed to make Kathy’s favorite Raggedy Ann dolls.

More importantly, Kathy discovered that the computer is a lifeline for the chronically ill.

Kathy describes her transition into using the computer as:

“ Letting go, I learned to use the computer to create a new way of still using my talents and be able to continue making money at what I love to do. It's not the finished product, but I create from start to finish patterns, photographs for a CD with instructions for others to be able to create dolls

Letting go has just allowed me to expand my talents in other areas... the computer.”

And Kathy found a lupus support network online.

Kathy had been participating on AOL’s Lupus Message Board. Kathy saw some needs that were not being met, though, and eventually came up with a better design that would meet the needs of others like herself.

Kathy’s website features an information library that is easy to access. She also has a design that allows readers to change fonts and size for easier reading. Kathy has access to a wealth of information that is easily available to participants on her website.

Her goal is to get that information out there to the public.

A typical day for Kathy starts with checking online to respond to e-mails and questions. She makes it her number one priority to try to respond to everyone before the end of the day by checking online again at night before she turns off her computer.

During the day, Kathy likes to get creative with the website. Recently she has added live chats, and a filmloop that shows photos of actual symptom manifestations.

I asked Kathy if there is anything she would like to add to the website… what is the next step.

She jokingly responded live video chat. She has been tinkering with the idea though… and if it is possible, Kathy is certainly up to the task.

Kathy’s hope for LupusMCTD.com is:

“I would LOVE to be able to get each visitor to either make a post, if not, at least sign the guestbook, so we have a general geographical idea where they are from. I created maps to track visitor & member's IP Addresses on a map powered by Google. With that and our Face of Lupus Film Loops, we become more than a screen name, we are human and we are real. “

I asked Kathy has she ever had the “WHY ME?” question that so many of us face in time of crisis. Here is Kathy’s response:

“I have thought of this one many times when I think, ‘Why me?’
Then I think, ‘Why not me?’

If it were not for this all happening, I wouldn’t of met the wonderful people I have met via Internet, I wouldn't of created the website to be able to help others.

I lost 2 of my sisters and without them and now my parents are gone, I have Dave and the kids in my life.

That's it.

But I can say it with tears in my eyes and a happy heart,

I have true caring friends who understand what my physical health problems were, still are, and will continue to be.

That is why I think I have it for.

Otherwise, I honestly don't know where I'd be during the day.

I try to think about it, I no longer physically have my family members here, I always used to spend time at my parents and at my sisters doing for them. (decorating, baking, things family members do)..

And now with the invention of computer technology, I can be a help and friend to others like a family, as we all share one thing in common. Something not even some family members understand what you are going through. “

And so Kathy “Pays it forward”.

Through years of challenges and loss (most recently her sister in June 2005), Kathy continues to be who Kathy always has been…

an innovative, caring, woman with a “can do” spirit that resists the bonds of lupus.

VISIT KATHY’S WEBSITE (don’t forget to sign the guestbook!) at:


www.LupusMCTD.com

#90 - Yes, I Still Have Lupus

I have not written much lately about my personal experiences with lupus.

I guess I just have not felt much like doing that of late.

The limited energy I have has been swirling around creative projects and coping with a family health crisis.

And the best of all is that this is probably been the first summer since Little Bear was two inwhich I have been able to tend to him pretty much full-time.

Of course, I am a drooling idiot by lunchtime, but Little Bear is a forgiving soul and we have new next door neighbors who are his age.

This has turned into a perfect arrangement. The kids take turns bouncing from the Cozy Cottage to the neighbor's house for a six hour stretch most days.

Bear is elated, I get to sit back and watch him being a kid, and the lovely mom of the other kids give me a huge two hour chunk of time mid-afternoon in which I can rest alone.

Regarding Ms. Lupus... she still hangs around here, even though I have told her everyway I know how to go away.

I have a neurologist appointment in about two weeks.

Mabel the migraine monster has taken on such a life of her own that she is here daily.

When she is not making pain, she makes my brain feel like it is being tightly squeezed. She makes vertigo and nausea. She makes it difficult for me to comprehend what is being said to me, and I have grown increasingly exacerbated by trying to carry on a conversation.

The movement disorder stuff has also worsened. I feel like one of those old stop action figures from the black and white films about dinosaurs and King Kong duking it out.

The hope is that I am having side effects from my medications. Although that is a very unpleasant specualtion, the alternatives feel worse to me.

My greatest concern is CNS lupus or "sticky blood" (vasculitis).

Getting hit in the brain with lupus really is a stinker.

It hits at the core of who you are as a person.

I am not my old self.

Oh well, I have grown so accustomed to this that I hardly fret any more.

You just build up this incredible tolerance level for various body things that fall apart when you have lupus.

So when one of us with lupus says, Ow! That hurts!" we are talking MAJOR hurt, not a stubbed toe.

Stubbed toe hurt is just the status quo for many of us.

This morning I actually missed having a good old sick day from work.

Can you belive that?

I have been so ill the past several days, that I definitely never would have gone into the office.

But, I would have gotten better, and returned to work, and had my workmates say, "How you doing? Feel better now?"

You don't get that with lupus.

You don't get to feel the joy of recuperation and a return to health.

Yesterday I toggled between, "Oh Lord, please don't let me throw up," to "Okay now, I can manage the next five minutes, let's see if I can cram some laundry into the washer."

You have to function.

You just can't lay in bed and take sick days.

Because Well days rarely if ever occur.

So you can't go waiting around for that.

Still once in awhile I long for a day of bed rest. Just to curl up under the blankets, watch bad t.v., eat my toast and ginger ale, get horribly pampered, and then pretend that tomorrow I will be all beter and life will go on healthy and happy.

Nope, not healthy here.

But, I am happy.

I met with an astrologer while at the Canyon Ranch Spa.

Please do not ask me "What were you thinking?"

Because I honestly couldn't tell you.

But, she had somethingto share from her personal life that flipped my eyes and mind open like a cork flying out of a bottle.

Her lover was in a car accident that has forced her into life in a wheelchair.

She and her partner went to see a very wise person who is a healer.

Her partner had asked "Why me?"

And this wise person told her, "I can not answer this for you, but here is what you need to do. Write a list of everything in this life that this accident has given you."

Wow.

A Zen moment if ever there was one.

Without lupus, I would never have met so many wonderfully delightful friends from all walks of life.

Without lupus, I would not have discovered that I am a writer.

Without lupus, I would not be spending my summer days, blissfully and crazy in love happy watching my little boy at home.

Without lupus, my family would not be as emotionally close as we have become now.

Without lupus, my heart would not have been broken and poured open as it has now.

Without lupus, I never would have truly begun to understand the depth of human suffering.

Without lupus, I would not have discovered that I can paint with a computer mouse.

Really, the list becomes endless.

Lupus has given me so much.

Most recently, lupus landed me a free trip to Canyon Ranch Spa... because someone read my stuff, liked what they saw and asked me to write some more.

Never in my wildest dreams could I have imagined that.

So, yes, I still have lupus.

I have to see a neurologist in two weeks.

And I will probably be miserable as they screw around with my medications or push me through miserable tests or tsk-tsk away my concerns leaving me feel invalidated and ridiculous.

But as I have said many times before:

"I have lupus... Ms. Lupus does not have me."


RESOURCES: Jess Kielman - Feng Shui, Tarot & Astology, Guided Imagery, Graphology

Basic Feng Shui, Canyon Ranch Feng Shui, Feng Shui Weekly Tips

#89 - Missing Woman - Legitimate Source

I recieved this bulletin from an online friend who is a journalist. This is not a hoax.

Loretta


This is legit. Here's a link to a recent news story. The girl's name is Lori Slesinski.

-------------

This girl has been missing from Auburn for a about two weeks now and if you would help us keep reposting it so that people could see her face, maybe someone will recognize her.. Her car was found and it was burned up... but no signs of her.



This is her myspace profile

http://www.myspace.com/52273957

Please repost this message. It's amazing how we all have time to repost all these messages about ourselves...I think we can all take a minute to copy and paste this message.

(To copy this bulletin with the picture, hit the reply button, copy all of the info (BUT DON'T ACTUALLY REPLY)...then go to post bulletin and paste it all there....)

#88 - SICKO Update

Filmmaker, Michael Moore, sent a general letter out today to his subscribers regarding the progress of his upcoming documentary about the American health care system.

"Friends,
Just a quick note to let you know how things are going.
Back in February, I asked if people would send me letters describing their experiences with our health care system. I received over 19,000 of them. It was truly overwhelming as we literally took a month and read them all. To read about the misery people are put through on a daily basis by our profit-based system was both moving and revolting. That's all I will say right now.
We've spent the better part of this year shooting our next movie, "Sicko." As we've done with our other films, we don't discuss them while we are making them. If people ask, we tell them "Sicko" is "a comedy about 45 million people with no health care in the richest country on earth."
But like my other movies, what we start with (General Motors, guns, 9/11) is not always what we end with. Along the way, we discover new roads to go down, roads that often surprise us and lead us to new ideas -- and challenge us to reconsider the ones we began with. That, I can say with certainty, is happening now as we shoot "Sicko." I don't think the country needs a movie that tells you that HMOs and the pharmaceutical companies suck. Everybody knows that. I'd like to show you some things you don't know. So stay tuned for where this movie has led me. I think you might enjoy it.
At this point, we've shot about 75% of "Sicko" and will soon begin putting it together. It will be released in theaters sometime in 2007. "

You can read the letter in full at the link below:

Welcome to MichaelMoore.com : Mike's Letter

I would love to hear from any readers who have participated in this film project!