Sunday, April 29, 2012

5 Helpful Things to do to Help Someone You Love That Is Chronically Ill

1. Just Listen~  Don't try to find a solution. Most likely someone who is ill has researched and already found the obvious treatments. They just need to be able to open up about their feelings without feeling like someone is judging them for feeling sad, angry or scared.

2. Just do it, don't ask~  If you stop by and see there are dishes in the sink, of course it will help if you do them. Someone who is ill will appreciate that so much. It is little things like that, that are huge to a person that is sick. Stop by with an already made dinner, or offer to give their kids rides to school. Things like this help tremendously. Just don't ask. People don't want to feel like a burden and it is hard to swallow your pride and admit you need help.

3. Support their diet~ Sometimes to someone who isn't sick, diets of those who are might seem extreme. Trust them that there are reasons for them to eat how they do. Remember it is hard for them too. I'm sure they would rather be eating a chocolate chip cookie then a salad with gluten free dressing, but certain foods triggers inflammatory  responses or allergic reactions. So understand that they have certain dietary needs and support them.

4. Support their treatment~ This is another time when you just need to support, and not judge or try to give advice. When a person becomes chronically ill, they have ample time to research and learn about their disease. They will know all the treatments, join all the support groups and hear all the advice out there being given on there specific disease. When you see an ad in the back of some magazine that says, "(blah blah blah) cures this disease in six weeks, dont' clip it out and give it to them. If it sounds to good to be true, it is. When you are chronically ill, it is because there is no cure. So all a person can do is try different treatments to find what works for them. There will be no easy answer and each person will respond differently to each treatment. Just because your cousin Jack got cured in five weeks from something doesn't mean the next person will.

5. Don't Invalidate~ When someone says they are in pain, they are in pain. It doesn't matter that they "look" fine. There is no official face for pain. If they are moving slow, then let them take their time. Just because one day they had a "good" moment, doesn't mean they are fine now. With chronic illness symptoms wax and wain. One day might not be as bad, or above baseline, and they might be able to work out in the garden for an hour. This does not mean that at the drop of a hat they can go out to eat or do the dishes. When you are ill you learn to take the moment at is comes or to live "five minutes at a time." So try not to compare days or activites. The person is not faking. It is normal for a chronically ill person to have good times and bad times. Most likely their "good" times might land a normal person in the hospital, but they have learned to live around their symptoms and not panic anymore at certain aches and pain or strange neurological symptoms.

Wednesday, April 25, 2012

Lyme Disease Memorials~ Videos and Sites

Here's the links to my Lyme Disease Memorial Videos and website. They are all the same just different music so if someone wants to add their own they can or they can pick which one they want to play at which walks or benefits..

Lyme Memorial with rock/country songs
Lyme Memorial with no music
Lyme Memorial with classical music

Heres the online memorial that you can leave comments on each person who passed pictures...

Another online memorial~

They are geared more towards nonlyme people..i know that a lymie might not be able to sit and watch this and read everything, but I wanted to make them so that they could be played and loop at events on a background screen or whatever.

Lisa Hilton

Memorial  Video with Rock/Country Music

Memorial Video with No Music (Add your own playlist at events)

Memorial Video with Classical Music

Saturday, April 21, 2012

We lost more friends...

But God gained more angels...

Beverly Casey- Bev wasn't a Lymie but a good friend to many and a supporter of our cause.

Patrick Wylie Kelly April 2012

Andrea Raphael- Andrea’s Obituary

Mary Shea-  March 31, 2012

Friday, April 20, 2012

The Reality of Lyme Disease

I might rock the boat a bit with what I'm about to say, but here goes. Why do we fight so hard for long term abx and in every single lyme show, it looks like it is hard to get diagnosed, but once you find that perfect dr, they put you on a picc line, and voila, you are better?

I feel like we are short changing ourselves. 

Why are we not fighting for research to identify exactly what we have? We need more accurate tests so that we are not blindly treating for things we may not even have and possible further damaging ourselves. I know I have been treated for Mold, heavy metals, bartonella, lyme, chlamydial pneumonia and many  many more. But yet there is not one accurate test telling me that I really have these things.

I know that our LLMDS and LLNDS are doing the best they can and are willing to at least "hear" and "believe" us. It is not them that I am knocking. As for now they HAVE to treat us based on symptoms. But why are we settling for that? We need to demand accurate tests. I want to know I have something, not just guess and spend precious money and time on treating something that is not my issue.

"When my family watched "Under Our Skin" and the "Dr Phil Show", they all said, it looks like if you just get a picc line you will be ok. Where as I LOVE that these shows were done, really love it and think both were awesome, it is just a peek through a slightly opened door at Lyme, and are slightly misleading.

These shows make it look like the people in them live happily ever after once they got that iv antibiotics. This is not the case. I was thinking about something Brooke Landau said in one of her interviews, about how we have to not "expect a cure." I totally agree. Right now we can't expect that. Want it, yes, but the reality of Lyme is it's a lifelong battle for most of the people who end up chronic. It is also reality that a huge amount of us are not getting better no matter what treatment we are doing. I know a lot of people who have gone through the gamut of antibiotics and supplements and one alternative treatment after another and are still sicker or even sicker then when they started.

Yet, I hear people swear by their dr or their they lay in bed day after day, not really living, just surviving. I say we fight to "live" not just "survive."

And what about the people who simply cannot afford to treat? I am in this catergory myself. Is it fair that one person gets a port and long term abx and the next person can't even make it to a dr appointment because it costs $2,000? And that's just for the first appointment. Then how do you follow up or pay for blood tests, meds or supplements?

Here are the things I wish we would be trying to achieve:

1. Recognition of Chronic Lyme

2. More Accurate Tests
3. Research
I think that we need these three things to move along any further. I hope with the airing of the Dr Phil show and all the things that Lyme Patients are doing out there, that these things will start to happen. Once they recognize it is chronic then I'd think companies would want to be the first to come up with a cure, right? I'm just not sure where to start or "who" we need doing the research. ~Just my thoughts for the day. 

Saturday, April 14, 2012

My personal feelings on the Dr Phil show

When Dr Phil first started talking about Lyme Disease, I almost lost it. I almost went into a panic attack or some kind of shock. Just hearing the words "Lyme Disease" being spoken for the first time on a popular mainstream tv show seemed surreal. In the several years that we Lymies have been fighting to be heard and taken seriously, it was the FIRST time I ever felt like someone who could make a difference was doing something about it. And it was Dr Phil.

I really want to show my appreciation for Dr. Chitra Bhakta, Stephanie, Kathy and Brooke for going on the show and speaking up on the behalf of Lymies everywhere. Brooke could easily choose to keep it quiet as to not hurt her career, even though I know she has never done that, and on the contrary. Dr Bhakta could of not chosen to be on the show out of fear of repercussions that we all know. My own drs have had their license taken away as I write this. Stephanie no doubt, knew that people would question her and call her seizures fake and that she is just addicted to drugs. All these women and Kathy are sooo brave to come forward and we truly appeciate it. We all know it wasn't easy at all for any of you to do under the stigma of Lyme Disease, not to mention that you all probably felt really sick!

So, thank you!

Tuesday, April 10, 2012

Sign Up For The Wisconsin "Lace Up For Lyme" Walk Here!!

Sign Up For The Wisconsin "Lace Up For Lyme" Walk Here!!

To Register Click Here--->>  Register
          Online Registration
                                                      by PlanetReg

Saturday, May 19, 2012
Raffles, Silent Auction…………………... 10:00am
Walk………………………………………. 11:00pm
Close of Raffles/ Silent Auction/Food…..2:00pm

Milwaukee County Zoo
Maple Cove Picnic Area
10001 West Bluemound Rd. Milwaukee, WI 53226

Pre-Registration Fees
Adults (13 and up): $15.00
Children (3-12): $12.00
Family of 4: $40.00 – Pledges Required
Family of 5: $50.00 – Pledges Required
Family of 6: $60.00 – Pledges Required
Families larger than 6 please contact Jennifer Guzdek at

On-Site Registration Fees
Adults (13 and up): $20.00
Children (3-12): $15.00
Family of 4: $50.00 – Pledges Required
Family of 5: $60.00 – Pledges Required
Family of 6: $70.00 – Pledges Required
Cash or Check Only; we cannot accept credit cards

Pre-Ordered T-Shirts:$15.00
Please make sure to pre order your shirts, there won't be too many available on site!
Sizes 2X and 3X will be $17.

Food will be available for purchase for a nominal fee
Hamburgers, hot dogs, Lyme-friendly options, soda and water
Door Prizes will also be awarded.

Cash and Check ONLY; we cannot accept credit cards.
Jennifer Guzdek

 To Register Click Here--->>  Register

Monday, April 9, 2012

Lymie Dating and Friendship Site

My friend made this site to help people with chronic illnesses meet. Whether you're looking for friendship or more join in, and make a profile. You can select which disease you have and meet others in the same boat. It's a great way to get support.

Wednesday, April 4, 2012

Dr Phil Show airs on...

Brooke Landau, Emmy Award Winning Weathercaster with the CW Network in San Diego will appear on the Dr. Phil Show on Friday, April 13th. Brooke shares her 17 year battle with Lyme Disease. One which some doctors have called, the worst documented case in the country. Brooke went to bed fine one day, and woke up paralyzed. She overcame that battle and today she continues to fight and survive. Brooke’s survival story has been featured on the Today Show, Good Morning America, Fox News, ABC, Discovery Health, Mystery ER, CW Network…and now the Dr. Phil Show. Brooke says she continues to speak out for those you can’t.

LLMD, Dr. Chitra Bhakta will also be on the show. Dr Bhakta and Brooke both go up against an IDSA dr. Thank you to both of you brave women!

Here is Brooke's News interview from before.

Click On Picture To Play

Tuesday, April 3, 2012

Take The Pinkie Swear

Lyme Disease is such a devastating disease. It is so easy to become isolated and desperate with the never ending symptoms that Lyme Disease causes. Not to mention the abandonment of friends and family, and the rejection of the medical community. If you are feeling this way please reach out. There are lots of groups that can help. It can be hard to reach out, or even embarrassing. But those are NOTHING compared to the loss that your family and friends will feel if they lose you. So please reach out to others. Other Lymies will understand. I’ts okay to feel lonely, depressed, angry, or alone. These are real feelings just as happiness, joy, and all those are. But remember this is an infection in your brain making you feel this way. It may be just temporary. Try to hold on. You never know what is around the  corner.
There was a young boy named Shea. Shea had Lyme disease and was very sick.  The day before he went to heaven he asked his mom to “double pinkie swear” that she wouldn’t ever take her own life if something happened to him.  It was hard, Roxi lived through some terrible losses, first her son, then her mom. But she kept her promise and today is on lyme treatment herself and enjoying a life with her grandkids. Had she done something different, she wouldn’t be here enjoying her life and her two grandkids, making memories. So to honor little Shea’s wishes, I would like to ask everyone who reads this to “double pinkie swear” that you will never make the decision to take your own life. Please close your eyes and picture yourself pinkie swearing with little Shea. Then go to the bottom of this page and sign your name in the comments section. This is your contract with Shea that you will always reach out to others when you need help and you will never do anything to hurt yourself.                                                                       To read more about Shea Click Here