Confessions Of A “Functioning Lymie”

My Color Is Lyme

I look fine. I may seem fine. I probably sound fine. There are some new photos on Facebook from a couple weeks ago of me out with friends, smiling and having fun, having a few days of normalcy that are momentous and rare to me, but would probably not be a big deal for you and just a normal part of life. They were taken during one of those glorious and all too rare periods when I had several consecutive days of energy and feeling pretty good. (Today is not one of those days.)

(*disclaimer; I have to attest to the fact that I am still on an upward track with my overall health and what I am experiencing right now as far as this current setback is die off from recent treatment on May 23rd….at least I believe so).

But what people don’t see are the days inbetween, the…

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Rape Culture in the USA

I am literally sick and disgusted at #RapistBrockTurner, his father and Judge Aaron Persky that I have to blog about this and share a story.

As a professional woman I have dealt with my share of sexual harassment.  I started my professional career as a CPA doing tax work in January 1986.  In the 1980’s no one cared that sexual harassment happened in the work place.  Not even the HR department! Shocking, I know.  It’s true.  If you were sexually harassed at work you just had to keep working with the person.

I worked 5 1/2 years in public accounting and then 6 years in a corporate tax department of a large company.  Sexual harassment happened to me and other woman I worked with but no one cared.  The men never got in trouble, never got fired, nothing ever happened. So why would a woman even mention that she was sexually harassed at all?  We stop mentioning it because of people like #RapistBrockTurner, his father and Judge Persky.  They don’t think there is anything wrong with it.  They blame it on alcohol, drugs and promiscuity.  They are more concerned about the rapist than the victim.  Wake up Dan Turner! Your son is a convicted rapist!

I’m going to share a horrible story that still makes me sick to this day and I was the lucky one.  I was not drunk and I was able to fight off my attacker!  My roommate wasn’t so lucky.

It was 1991.  I had a job I liked and had just bought my first home. To help with the payments I decided to get a roommate.  I will call my roommate Samantha for purposes of this post.  Samantha and I decided it would be fun to have a summer BBQ/pool party.  I owned a townhouse and our community had a pool so we both invited friends and co-workers over one afternoon on a weekend.  The afternoon was fun and people started leaving so by evening time there was only a small group left.   At some point I went into my bedroom for something and was attacked by one of my co-workers who I will call Brian.  Brian pushed me down on my bed and because I wasn’t drunk and he was really drunk I was able to fight him off and get myself out of the situation.  The music was loud so no one else heard this happening.  I was extremely pissed and went back downstairs and wanted Brian to leave.

At that point one friend (I will call Steve) was passed out on the couch which was fine because he was too drunk to drive home. Brian’s ride, Jeremy was ready to leave and I thought Brian was in the bathroom but when we went down the hall we heard Brian in Samantha’s room.  We both were confused but thought maybe Brian and Samantha liked each other.  So Jeremy left.  At that time, we had no idea that Samantha apparently was so drunk she took off her bathing suit and passed out naked in her bedroom while the rest of us were still hanging out and talking.

To this day, I regret not knocking on her door.  But I know this was not my fault or Samantha’s.  I had no idea what was happening to her.  I couldn’t even imagine that someone I knew and worked with would be committing a horrific violent act in my home.   But it happened.  A rape occurred in my home by someone I knew.

The next morning Samantha told me what happened. I was shocked, pissed, angry and Brian was still in my house. Thankfully Steve had slept on my couch and was still there.  I told Steve that he can’t leave my house without taking Brian so he did and they left.

Samantha and I contacted the police and she went to the hospital. The story continues like so many other rape victims.  His word against hers.  I remember the prosecutor coming to my house to record a phone conversation between Samantha and Brian on speaker phone. They were trying to get him to admit what he did.  He didn’t. I remember being at work that following Monday when they said they were going to arrest him.  It ended up the police didn’t have enough evidence to arrest him so nothing happened to him.

I had to face him every day at work.  He continued to harass me at work by constantly asking me out even though he was dating someone in our department.  He would constantly tell me that I was the one he wanted not the person that he was currently sleeping with in the office.  Luckily, his part of the department was moving out of state but not for 6 months.  I liked my job but wanted to quit because of him.  I couldn’t afford to quit because I had to pay my mortgage.   I was so angry that one day I started screaming at him when he stepped into my office.

Then one day my boss walked in my office and said he had great news.  They decided that we needed more help in my area and were going to have Brian stay on.  I could only respond by saying “I will quit if he Brian stays”.  I never had to quit because they didn’t keep Brian.

I wasn’t the one raped so I can only imagine how horrible it is to be a rape victim.  I’m sure Brian has raped other woman without any consequences.  It’s disgusting and there was nothing we could do.

The strong woman who survived being raped by #RapistBrockTurner has to live with that the rest of her life.  Rapists have one goal and #RapistBrockTurner was no different.  He wanted his “20 minutes of action” as his father put it.  His father is part of the problem.  He didn’t teach his son that rape is wrong. He didn’t teach him you don’t rape.   He is a white male.  If he was non-white his sentence would have been different and we all know that.

I get it.  He loves his son and doesn’t want to see him in prison but he is a convicted felon. He was caught in the act and convicted by a jury.  Convicted of 3 felonies!!!  His mother wrote a letter to the judge as well and stated this “My first thought upon wakening every morning is “this isn’t real, this can’t be real. Why him? Why HIM? WHY? WHY?”  

REALLY?  WHY DID YOUR SON DO THIS? HE IS A CONVICTED FELON AND SHOULD BE PUNISHED ACCORDINGLY!  

He should be sentenced to prison.  His mother begged for no jail or prison time.  She said her family “will never be happy again.”  

WTH?  DO YOU EVEN CARE ABOUT WHAT YOUR SON DID TO THE YOUNG WOMEN?

No, I don’t think you care.  Your son is not a “trust-worthy and honest person” like you think.  Getting drunk or taking drugs doesn’t make you a rapist.  Raping someone makes you a rapist.  Your son is not “considerate, and respectful” like you say. There are consequences to committing violent crimes and the punishment in this case didn’t fit the crime. The Turner family would feel completely different if some young guy did this to their daughter.  

I’m so sorry this happened to this women and that this has happened to so many other women.  I wish the best for this woman.  She stood up and faced him and read her letter.  I can’t imagine how difficult that must have been.  I have already read her letter twice.  I won’t forget it.  I hope her letter helps other rape victims.  I wish justice was properly served.

-A big thanks to the two Swedish men that helped her –

Here are links to the heroes in this case and the letter the victim read in court  

The Heros of the Case

The Victim’s Letter She Read in Court


More good links

What does Rape Culture Mean?

I’m a Dad of 3 Boys. I Married a Rape Victim—& I Have Something to Say to Brock Turner’s Father

The Conversation You Must Have With Your Sons

A Sexual Assault Survivor Responds To The Stanford Rape Case


Here are other links to the #RapistBrockTurner Case

#RapistBrockTurner Letter

www.rapistbrockturner.com

Summary of the Case

Guilty Verdict

#RapistBrockTurner Lied

Did He Send Out Pics of Victim’s Breasts?

Rapist Blames Party Culture on Campus

Dan Turner Plea to Judge for Leniency for His Son

Carleen Turner Letter to Judge

Fallout by Brock Turner’s Friend 

Vice President Joe Biden’s Thoughts

Philip DeFranco Stanford Rapist Brock Turner Video

Philip DeFranco Update

Ban from USA Swimming

Racism in Sentencing 

Recall Judge Persky

#RapistBrockTurner Legal Defense

 

 

 

 

 

 

 

 

 

 

Food Sensitivities and Migraine

I’m not saying this will get rid of all your #Migraine but if you haven’t had a food sensitivity test you really should get one.  It’s a simple blood test and different than allergies.  If you are allergic to something you get a reaction to it right away.  A food sensitivity can come out days later.  That’s why continuing to do a #migrainefooddiary is so difficult.

Check out this Immuno Labs Video and Immuno Labs Website

In the 18 years of going to “Headache” Specialists not one ever suggested food sensitivities as a possibly trigger.  Nope!  Just do a food diary.  Really!!

 

Lyme Disease and Fluoroquinolone Antibiotics

Thank you Lisa for the article. I regret taking Cipro this past week for Colitis. I ended up in the emergency room again from the side effects of it. It is horrible drug! #lymesucks

Floxie Hope

Lyme Disease Ribbon

To my dear friends with chronic Lyme Disease,

I am so sorry for all that you are going through!  The pain, the exhaustion, the fear, the frustration – all of it.  My heart goes out to all of you!

I know that treatment options are a touchy topic, and that antibiotics are often a necessary part of dealing with Lyme Disease.  However, I’m going to jump right into a volatile sea and say, PLEASE, please, please be careful with antibiotics, and know that they are not all created equally.  Fluoroquinolone antibiotics – Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin – are chemo drugs that can do absurd amounts of harm.  I would hate for you to have to deal with two chronic illnesses at once – chronic Lyme and Fluoroquinolone Toxicity Syndrome.  Both are horrible.

Words of Wisdom from a Floxie with Lyme

A few comments on this site, from…

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Gut Problems

I’m reading more and more about how your gut influences your health, physically and mentally.  People have always said “you are what you eat”.  Well after having so many migraines I have tried to change what I put in my body, what products I put on my body and what products I use in my house.  And even more since I have found out I have Lyme Disease, co-infections, candida and other infections that I don’t understand.  You can check out my Getting Healthy section on my blog.  

Last Thursday was going to be a day hanging with a friend with the dogs but instead I texted her saying I needed to go to the ER.  Thanks Sue!  Sucks big time!   I ended up with Colitis (inflamed colon) and then today was listening to this webinar and decided to summarize it for you.  I hope this helps some of you.

Healing Leaky Gut webinar by Dr. Josh Axe so I have decided to summarize some of it for you.

*80% of immune issues are in your gut*

*To heal your body you must get to the root cause of your diseases*

6 main things that cause gut problems

1.  GMO’s

2.  Antibiotics

3.  Gluten

4.  Processed Sugar

5. Dairy, conventional dairy contain over 20 different chemicals and medications, including antibiotics.  

6.  Food Sensitivities, different for everyone

Super Healing Foods (different for everyone)

  1. Bone Broth
  2. Coconut oil
  3. Sauerkraut or fermented vegetables 
  4. Goats milk Kefer
  5. Blueberries
  6. Orange and yellow foods

Supplements to help

  1. Probiotics
  2. Digestive enzymes
  3. Adaptogenic  herbs if you have adrenal or thyroid issues
  4. L-Glutamine

 

So I’ll begin with 6 main things that cause gut problems.  GMO’s should be on our food labels.  I’m pissed I am on antibiotics right now for colitis even though they don’t know it’s a bacterial infection.   My stomach is already hurting worse from them and some yeast symptoms are back.  I tested negative for gluten sensitivity so I’m not 100% gluten free.  I’ve eliminated processed sugar 90% and I don’t eat dairy (cow products). 

Super Healing Foods  Here is a good recipe for Bone Broth and the reasons it’s healing.  I am going to start back on the coconut oil.  I do eat sauerkraut but probably should more.  I love blueberries and eat them a lot. Organic frozen blueberries are great for drinks when they are not in season.  I eat goat milk cheese and yogurt but will try Kefer.  I eat squash but will have to do it more often.

Supplements to help

I take probiotics every day.  I take enzymes recommended by my Naturopathic Doctor.  I’m not sure about adaptogenic herbs, never heard of them.  I interested in finding out about  L-Glutamine.  

 

 

 

 

Opioid Painkillers & Chronic Pain

We have a HUGE problem in this county with people with chronic pain.  The result can be an accidental overdose, dependency or addiction.  Let’s find answers to all the millions of people with chronic pain and stop treating them as drug seekers.  Stop limiting opioid painkillers for people that legitimately need it. That is not solving the problem.

It’s horrible when an accidental overdose of pain medications happens, or a chronic pain patient commits suicide because they have no where else to turn, or a person with chronic pain becomes dependent on opioids or when a person becomes an addict.  It’s just horrible but there is so much more to the chronic pain epidemic we have in this county.

  1. Chronic pain is not handled well at all within our health care system.
    • Some doctors and nurses don’t believe the pain is real.
    • Some Psychiatrists think the pain is “all in your head”
    • Some diseases/illnesses are not considered legitimate.
    • CDC lies about diseases and other health issues
    • Most medical doctors treat symptoms only.  Most don’t try to get to the cause of your pain.
    • Many medical professionals believe alternative treatments are quack doctors scamming patients.
  2. Most “alternative” or natural painkillers don’t work for people with chronic pain.
  3. Most people are not addicts so stop assuming that everyone who needs help with pain is an addict when they go to the ER.  An ER visit is horrible enough.
  4. Alternative or natural treatments are not covered by insurance so most people can’t afford to try them.  So they have no choice but to go to an MD and possibly suffer consequences.
  5. Some medical doctors treating Lyme patients have lost their license even though their patients were getting better.

I really try and limit my use of opioids but some days when the pain is unbearable I take it. And as most of you know, I do MANY alternative and natural things to try and get rid of my illnesses and pain. I know long term-daily opioid use can make your pain worse but somedays it’s necessary.

Making it more difficult for someone in pain to get medication isn’t solving the problem.  Making people feel like they are drug seekers isn’t solving the problem.  And cutting off medication from people who just have had surgery is so wrong.  Why should someone be made to suffer unnecessarily?

Check out this article about a women made to suffer  @NikiLeith @XOjane

Check out the New Jersey Emergency Room Article They will no longer give opioid pain medications at this hospital.  I can tell you based on my experience Stanford Hospital doesn’t either.

Here is what you need to know about Chronic Pain

  • We ARE NOT making this up. Our pain is very real.
  • We DO NOT want to live like this.
    • We are regular people like everyone else.
    • We can only imagine and hope for a life without pain.
    • We would give anything to feel normal again.
  • We did not do anything wrong to deserve a life of constant pain.
  • We try very very hard everyday to accomplish every day tasks that the rest of you take for granted.
    • Getting the the grocery store, cooking dinner, making beds, feeding the pets, vacuuming, unloading the dishwasher, paying bills, remembering appointments are EXTREMELY difficult.
    • Driving to doctors appointments is really hard.
  • Socializing with family and friends can be stressful because when you plan an event you never know how you will feel when that day arrives.  Committing to be somewhere and having to cancel at the last minute makes you feel horrible.   Once again you feel you have let everyone down.  But if we just need to lay down in one of your rooms for a bit then let us.
  • Remember that just because someone feels fine one minute doesn’t mean that can’t change the next minute.
  • We may be able to walk a bit one day but not the next.
  • Having to leave events because you are to ill to stay or need to be taken to the ER is embarrassing and emotionally draining.
  • We may feel like a burden to our family but we don’t want to be a burden to anyone.
  • We don’t want to complain constantly because who wants to be around someone who complains all the time.
  • We try not to be negative but sometimes the pain gets the best of us.
  • We pretend and to try and look normal even thought we feel like crap.  But we can only pretend for so long.  Just because we look fine to you doesn’t mean we feel fine.  We learn to fake it!

Here is what can help someone with chronic pain

  • Email, text, or pick up the phone and call just to say hi.
  • Offer to listen to them without judging their treatment methods.
  • Offer advice without being pushing.  Don’t say you have to do this or that or your not going to get better.
  • Take them grocery shopping when you are planning on going anyways.
  • Don’t even ask to help with chores, just come over and do it.
  • Don’t ever be upset that someone has to leave early or cancel last minute on a planned event.  No one wants to do that.  We want to go back to how life was before our chronic pain. We want to get out of our house.
  • Support their dietary needs and choices.  Many of us have foods that make us worse so don’t push if someone says I can’t eat that dessert.
  • Help with their kids.  Even just taking them for an afternoon can be a nice needed break for someone.
  • Educate yourself on their illness and feel free to ask questions and share what you have learned.

I can’t even tell you how many time I have a level 7-8+ migraine and taught an aerobics class, stayed in an meeting when I was ready to puke, went to dinner or stayed at family events when I was about to pass out.  I have learned and I don’t do that anymore.  I have learned to say NO and put myself first.

When you have a chronic illness you need to be selfish.  You need to take care of yourself first.  You know on flights when they say to put on your oxygen mask first before your child.  You are no good to your kid if you don’t get oxygen.  So probably for the first time in your life PUT YOURSELF FIRST.  It’s hard to do because we always want to be seen as strong and that we can handle anything.  We also feel that we will be judged if we stop and take care of our needs.

Well let me say this to all the other people with chronic pain  

YOU ARE STRONG

YOU ARE AMAZING

YOU ARE BRAVE

YOU ARE A FIGHTER

YOU ARE A WARRIOR

YOU ARE SO MUCH MORE THAN YOUR PAIN

Lyme sucks the life out of you!

Since November 2015 I have been doing many different treatments to fight my Lyme Disease.  The main one has been almost twice a week IV ozone treatments. The IV Ozone is a fascinating process.  The doctor makes one needle poke in a vein on your arm and attaches a bag.  The bag is put below you to fill up your blood.  Once its full the bag is hung up and ozone injected in it.  The ozone mixes in with your blood and then it is run right back into your vein. I’ve been doing this and other treatments and numerous supplements since November 2015 when I found out I had Lyme Disease.

Lyme Disease is so complicated, overwhelming and confusing.  I keep reading and reading to learn more like I did with my migraines.  But every time I think I understand it a bit more I really become more confused and overwhelmed.

I found out I have more than just Lyme Disease and one co-infection.  Every time I get a test done I find out I have more things wrong with me and treatment goes a different way.  I see the Naturopathic Doctor twice a week, the Lyme Literate Nurse Practitioner once a month and my Primary Care Doctor once a month.  That’s a lot of doctor appointments.

The last few weeks I have been having a lot of set backs. I do have some positives too.  And I always try to see the positive in this even if it’s the littlest thing.  But melt downs happen frequently.  No matter how strong you feel you are lyme sucks the life out of you.  This disease is no joke and the CDC thinks it’s no big deal and easily cured.  FYI:  There is NO CURE for lyme disease.

Since I have candida we have been trying to focus on that but killing the yeast and lyme buggers is killing me, physically and mentally.

So I was just reading about how your gut flora is so important to your health, physically and mentally.  Here’s some info:

All of this just makes me question everything and what is really the best way to deal with all of the lyme disease, co-infections and candida.  I need a Lyme Coach!  Yes, I actually was told that they exist.

Unsupportive Comments

This young girl has a lot of good points and suggestions. I’ve dealt with some but not from close family or my close friends. But from others yes! Even from medical professionals. I always appreciate any articles or info about migraines or Lyme someone sends me. I learn from everything. I’ve also learned to do what I need to take care of myself. It’s taken time but when you have a chronic illness or 2 you have to put your needs first or you won’t get better.

From: Thee Crohnie Grace
Every once in a while my family will say something that is unsupportive, I know they mean no wrong by it, I assume they just don’t really know how to deal with it or what to say. In which cases, if you do not have positive things to say then just say “I don’t really […]

https://theecrohniegrace.wordpress.com/2016/04/26/unsupportive-comments/

Mayday 2016

Very cool!

shelby's LIFE WITH LYME

For the first time, I was able to go to the Mayday event held in Washington, D.C. yesterday!

The Mayday project has been going on for several years now and rallies Lyme patients together in order to protest the IDSA.

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According to themaydayproject.org:

The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for accurate tests, better guidelines, improved access to treatment, more education for physicians, and increased funding for research.

My mom, my best friend and I traveled to D.C. yesterday to attend the Science Forum (more on that in another post). In the evening, the Mayday project held a vigil for all the lives that have been lost to Lyme disease.

Here are a few pictures…

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My Lyme – My Voice

My Guest Post.  Thank you LA Edwards!

Click below to read my story

My Lyme – My Voice

 

 

Sarah-A Lyme Disease Advocate

Thank you Sarah for supporting us Lyme Patients!

Read Sarah’s post

#LymeDisease

#MultipleSclerosis

#MS

If I Were the Devil…I Would Give You Lyme Disease

shelby's LIFE WITH LYME

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If I were the devil…I would give people Lyme disease.

  I would cause them to contract Lyme disease, whether through a bug bite or through another human being.  I would make sure that there was no good test available so that they wouldn’t figure out they had Lyme.  I would order Doctors to ignore the reality of Lyme disease and believe the CDC.  I would make sure that Doctors told their patients that their symptoms were all in their head, that they were crazy. I would make Doctors give them false diagnosis so they never figured out the real issue.

  I would give people unexplained headaches that drove them to their knees. I would give them so much joint and muscle pain they couldn’t move. I would cause them to have brain fog so they couldn’t go about their daily duties.  I would make sure that their immune system…

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Lyme Disease Awareness Month

May is Lyme Disease Awareness Month

Check out my video.

Share with your friends on social media.

Click here for YouTube Lyme Disease Challenge Video

 

 

Why I am Anti-Fibromyalgia

Don’t get me wrong.  I believe anyone that says they have pain.  I’m not only sympathetic to it I also understand it because I’ve had chronic pain for 21 years.  I’m just frustrated by a diagnosis of Fibromyalgia for myself or anyone else.  I didn’t accept it and neither should you.

This article discusses causes of Fibromyalgia, Chronic Fatigue Syndrome and other Auto-Immune Diseases.  There is also a good interview with the CEO of LymeDisease.org.  If you have been given any of these diagnoses it’s worth reading it and listening to the interview.

Is Fibromyalgia the Real Diagnosis? by Envita

#LymeDisease #Fibromyalgia #ChronicFatigueSyndrome #AutoImmuneDisease #CDCSUCKS

 

For more updates follow my blog via email

 

Why isn’t every doctor trained in Functional Medicine?

So Conventional medicine is probably what we are most familiar with because we have been going to these type of doctors since we were young.  Conventional medical doctors are trained to determine what disease you have, give you a diagnosis and treat your symptoms with either a pill or surgery.  Conventional doctors are not trained to figure out the cause of your symptoms.  They are paid to diagnose diseases.

My understanding of Functional medicine is that the doctor is looking to determine the underlying cause of your symptoms.  These doctors will do thorough digging into your history and lifestyle and try to determine if something is causing your symptoms.  Doesn’t that make sense?  They can give you a diagnosis but also tell you why you have a particular disease.  They may incorporate conventional medicine and alternative medicine in their treatment plan.  Alternative medicine may incorporate herbs, homeopathic, nutritional supplements and more.  They want to determine if you body is working properly and fix it is it’s not.

You may also see Integrative medical practitioners.  They are medical professionals that integrate alternative treatments in their practice.  So you might see a Neurologist that uses Chinese Herbs or does acupuncture.

I feel that medical professionals are failing patients.  It’s maddening to me that I went to “Top” Headache Specialists in the San Francisco Bay Area for 18 years and not one had any other options but pills or injections.

Here is how migraine patients are treated:  Generally, you wait several months for an appointment and when you finally get in you are with the doctor for 10 minutes.  And you most likely had to drive a long distance to see them.  You feel pressured to remember everything you wanted to ask before they start to get up and leave the room.  You are usually given numerous prescriptions to try and told to come back in 3 months.

NOT ONE of my doctors thought to test for possible allergies, food sensitivities, hormonal imbalances, nutritional deficiencies, environmental toxins or anything else that would be causing a migraine. I was always told that they don’t know why I had a migraine every day.

Here is how Lyme patients are treated:  You start with your primary doctor who does blood tests and then gives you some general meds to relieve the symptoms.  Then after months of that you move on to a specialist or 2 or 3 or 4 or 5…  The specialists give you a diagnosis in their field of expertise and sends you away with more meds.  Then when your symptoms don’t go away they send you to a psychiatrist because they think it’s all in your head.

Somewhere at some point the medical profession lost site of their goal of helping patients.