​(This is another really long post. Apologies in advance!)

On September 25th, I attended “An Evening with Spirit” hosted by James Van Praagh. I had read his most recent book, Adventures of the Soul, earlier this year, so I was intrigued by the idea of hearing Van Praagh speak when my mentor alerted me to this event. The event was held at Unity Church of the Hills in northwest Austin, just 10 minutes from my home.

As I have had issues around disability accommodation in recent months (in particular trying to see another psychic medium), I was concerned about being able to access this event without challenges. In particular, there were no paper tickets issued for the event. Instead, one had to show one’s driver’s license to gain admission. I feared that this would mean a huge line at the door to get in, and right now, I am not physically capable of standing for any extended amount of time. Thus, I contacted the ticketing company through their website the week before the event. I received no response. A few days before the event, I tried contacting the organizing company through their website. When I didn’t get a quick response, I tried calling the church. A volunteer named Joan answered the phone, and she responded with compassion and friendliness. I felt completely welcomed by her. She didn’t know the answers to my question and the paid staff was in a meeting, but she called me back within an hour with answers. She told me that there were benches in the lobby and that there would be church volunteers in the lobby who could assist me if I needed help with the line. I would be able to hand one of them my driver’s license and they could get me checked in. I felt so relieved by this information. 

When I did eventually get a response from the organizing company, and it was far from adequate. The email I sent read, “I sent a message last week through your website but never heard back from anyone. I require disability assistance for the event and need to talk to someone who can assist me.” The woman who responded said, “The church is fully handicapped accessible, but we are not equipped to provide personal assistance.  What kind of assistance were you looking for?” That response is a “no” in advance of knowing what I need which legally is the wrong answer under the ADA. Public events like this are required to provide reasonable accommodations. I was not asking for personal assistance, but the woman responding made assumptions before finding out the situation. My response to her was, “‘Fully handicapped accessible’ is relative; it actually doesn't encompass several of my disabilities. What that means in most cases the building is wheelchair accessible. I am mobility impaired but not in a wheelchair and need different accommodations.” Mercifully I had already talked to the church who had given me a compassionate response unlike the event organizers who said no in advance of finding out what I needed. This is the kind of thing that is VERY frustrating for someone who is disabled and has found the strength to ask for the help that they need to attend an event.

The evening of the event, I arrived at the church at 6:57 for a 7:30 pm event, and when I drove up to the parking lot and a volunteer attendant, I held up my disabled permit. The volunteer had me stop and roll down my window. He informed me that all the disabled parking was already taken, and I felt my heart sink and my stomach clench in a panic. However, he quickly remedied the issue: The parking attendant “created” a disabled spot for me by having me pull on the grass next to his own truck not far from the door to the church. Had we been in Central Austin, I would have been concerned about getting towed for such a maneuver, but I decided to trust this man. On my way out, I noticed that he had done the same for several other disabled attendees who arrived later than me. Clearly the church was aware of the problem of having more disabled attendees than spots and had worked through this issue before. I was grateful.

Walking into the lobby of the church, there were six volunteers standing at podiums, each with a portion of the alphabet. That meant that there was absolutely no wait, and I did not have to stand for any length of time. I went straight up to the “G” person, was checked in, and got my wristband to enter the auditorium. It was that simple. Once again, I was so grateful. While I wanted to browse the offerings in the lobby including an amazing looking gift shop, I knew I had to sit down and save my energy just to get through the night. I pulled out a book and read for a great deal during the wait for the event to start. The people in front of me were pretty heavily saturated with fabric softener, and the woman had on some perfume as well, but I was doing ok. Another woman was wandering around looking for a seat, and I invited her to sit next to me as I could tell she wasn’t loaded with fragrance. While my skin felt mildly irritated from the fabric softener in the air around me by the time I left, overall my body did well handling all of the chemicals it faced that evening. I was so pleased with how my body did under circumstances that would have left me in horrid pain for days afterward.

James Van Praagh was a far more entertaining speaker than I had expected. The person who introduced Van Praagh noted he has been doing this for thirty years, and when Van Praagh took the microphone, he noted, “Thirty years. Wow I am old. And I’m still short.” He called himself a comedium (a comedian plus a medium). Van Praagh said that he works in the Light, but he also has to keep it light, and his humor throughout the evening did help prevent the event from becoming overwhelmingly deep and depressing. He also noted that life on the road is just him and the dead people, so he has to do something to amuse himself. He made puns on sicko, psycho, and psychic as well. I agree with him that spending so much time in contact with the spirit world definitely gives one a different perspective, and it has changed my sense of humor as well. I find many things funny that I never would have laughed at before.

While most of the evening was talking with souls on the other side, Van Praagh also presented some philosophical and spiritual ideas. He said that the two biggest illusions most of us have is a sense of separation and death. We are all one: We are drops in the same ocean. In addition, death is not an end. It’s just a change. The spirits are still alive. They refer to us as “the living dead” because so many of us don’t actually live our lives but instead act out of fear. In addition, Van Praagh stressed that thoughts are real things. We create our own heaven or hell based on thoughts and vibrations. Most importantly, Van Praagh brought a message of love, stressing how important it is that we love and be guided by love.

By this point in the evening, my heart chakra was hurting terribly. I couldn’t figure out why. I was in a good mood and was feeling so blessed that I had actually made it into the event without any major problems. However, when Van Praagh mentioned empaths, I wanted to do a facepalm. Der! It wasn’t my heart hurting. It was everyone else around me who was wanting so desperately to hear from their loved ones. I was picking up on that and feeling heartache. I worked to boost my shield a bit and offered thanks that I was not in a place of personal pain and grief as so many clearly were.

When Van Praagh asked how many people had been to a reading with a psychic medium before, I wasn’t sure what to do. I ended up raising my hand. I’ve never been to a reading with another psychic medium, but I talk to the dead on a regular basis myself and I receive messages for other people. That counts, right? A large number of people there were first timers, and it was obvious from the energy in the air that many were very excited to be there.

Van Praagh took questions from the audience before he began receiving messages from the spirit world. Someone asked if they could set up signs with a loved one before that person died so that they could know that the other person was around. Van Praagh said that it was absolutely possible, but it was easier in some ways to do it after the loved one died. In that case, one would simply ask the loved one to send butterflies or raccoons or whatever to show that the loved one was around them.

Someone then proceeded to ask a question about reincarnation which led to Van Praagh wandering a bit in his answer. However, it was the most interesting thing for me all evening. Van Praagh very much believes in reincarnation. He believes we are souls having human experiences. This is only one world, one communication. In comparison to the rest of the Universe, the Earth is only a grain of sand on the beach. Van Praagh also believes that only 20% of the soul is in the body, and 80% is outside. He thinks this is how one can experience several lifetimes simultaneously. He believes that we are experiencing far more than what is going on in our bodies right now and we just aren’t aware.

Before Van Praagh began receiving messages from the other side, he emphasized that what he does is a three way conversation between the other side, him, and the audience. It is communicating in different language that is thought based, and it is very different than spoken language. He was the translator for all of us. I realized why he gave such a strong preface once the readings were under way because Van Praagh often makes comments to the spirits saying things like “slow down” or “I don’t know.” He definitely serves as a channel, often speaking in the first person as if he were the spirit who is coming through. I found it fascinating to watch him work.

Also before beginning receiving messages for loved ones in the audience, Van Praagh lead the group in a mediation which was a great way to calm the energy of the room a bit. However, this was the one and only time during the evening where I strongly disagreed with what Van Praagh did and said, but that is influenced by my personal experiences. I can understand that others who have walked a different path don’t see the world in the way that I do, and Van Praagh’s experiences may be very different than mine. The meditation was based on the idea that the heart is the center of the soul, and idea I had no problem with. However, in the middle of the meditative exercise, Van Praagh encouraged people to let spirits around them merge with their bodies so that they could feel their deceased ones’ love for them in a deep and personal way. As someone who had many unhappy and unhealthy souls attached to me which we had to clear in my journey to health, this made me cringe. I don’t invite others to randomly share my body space if I don’t know whom I am working with, and most people in the audience had no idea whom or what they were inviting in (though they certainly wanted to feel the love of family and friends). Unless the setting were one where I knew that everyone was properly grounded and shielded, I would not lead an exercise like that because of the negative consequences it could have for less than spiritually prepared individuals.

From there, Van Praagh began receiving messages. In between messages, he would often take a metaphysical break, talking a bit about important topics related to what he had just related from the other side. Some of his wisdom included:

• Memories create our experiences.
• Prayer is unconditional love. It doesn’t matter what words come out.
• LIfe is a series of choices: We can act out of love or fear. When we work from a place of judgment, that is a place of fear, and that creates a false ego.
• After we die, love and thoughts live on. After death, we all have a life review when we discuss what we did and didn’t do with others who were part of our lives. We judge ourselves in the life review.
• We are works in progress.
• We should give unconditionally even if we know we’ll never get it back.
• We shouldn’t waste time. We should make the most of it.
• Van Praagh feels the movie Ghost is very true about presence of the dead. Also based on that movie, Van Praagh wants us not to think of our loved ones how they died. If we think about their deaths, we make them die every day. Instead, think of how they lived.

I didn’t take a lot of notes on the messages he brought through, in part because I was so captivated and in part because they felt very private even in a room of 500 people. One of the most poignant was a widow whose late husband came through. Their love for each other was palpable even across the divide. When the husband told her that he cuddles her in bed every night, the whole room let out a sigh because it was such an emotional sentiment. In another message, Van Praagh was bringing through someone who had committed suicide with a gun. When he said that, eight people stood up, to which Van Praagh made a comment along the lines of, “Oy. Texas and its guns” which caused the entire audience to laugh. When Van Praagh added that this person had a collection of guns, only two people sat down. Clearly Texans do love their guns. The other memorable message for me was a twenty-something son coming through for his mother (and his father who was not there). The young man was an empath who didn’t know how to deal with the energy he was feeling in this life which lead to him eventually overdosing. On the other side, he was helping animals who had crossed over alone, another comment that deeply moved the audience on an emotional level. Van Praagh asked the mother to remember this side of her son, the young compassionate man who rescued animals, not the man who died an unfortunate early death.

For me, the biggest takeaway from the evening was to be reminded how I am so blessed with my metaphysical gifts to be able to connect with the dead. It has given me a sense of power over death that many others don’t have. Watching people who don’t have such strong gifts connect with Van Praagh’s help was deeply moving, and it made me realize how much I undervalue on a personal level what I can do. I also realized during the evening that I really didn’t have anyone I *needed* to come through. For a moment I thought my paternal grandfather might be coming through because Van Praagh was in my area talking about one of the health issues that my grandfather had and that he was a veteran of WWII, but as he progressed, it was clear that it wasn’t for me. That was fine by me. I am comfortable with where my loved ones are. I’m fairly certain that my daughter has reincarnated, so I didn’t expect or need to hear from her either. Anyone else I might want to hear from, I have. As a result, seeing others connect with ones they needed to get closure with was a far more powerful gift than receiving a message for me.

I am grateful that I was able to make this event. I appreciated having such a great experience with Unity Church of the Hills which has made me quite willing to go back to other events there. I was thrilled to watch Van Praagh in action. I didn’t attend the rest of the events that weekend, but I am sure they brought a great deal of healing, hope, and education to those who did.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

loneliness is a sign
you are in desperate
need of yourself
-rupi kaur

This poem recently showed up in my Facebook feed. It’s intended to be an inspirational thought. I believe that what it means to convey is that if someone feels lonely they may need to do some soul-searching to find out why they are lonely and what it is within them personally that is causing loneliness. While I can see this statement being true for someone who is surrounded by people and activity yet feels lonely, I found the thought pretty ignorant and insensitive as someone who was homebound for six years and is still limited in her ability to socialize.

The life of someone who is homebound is generally pretty lonely. Our society often forgets about or chooses to ignore homebound people when they stop attending various events as I discovered all too well when I was so incredibly sick. With the multiple chemical sensitivities that I have thanks to Lyme disease and weak genetics, my reactions were severe enough that not only was I homebound but I had to limit who could come in my home. Unless people used all natural and unscented detergents, soaps, and body products, I would get physically sick from people coming in my home. At one point I had my least scented friends come over and help me clean since I couldn’t do it and my ex-husband was not able to keep up with cleaning, everyday tasks, parenting the kids and working full time. The day the friends spent in my house was a highlight of my years of being homebound, and yet I ended up with a three day migraine after they left as “payback” for them being in my house and not being 100% chemical free.

Unless a person has a disease like cancer which is considered a socially acceptable cause to rally around, most people who are homebound end up being abandoned by a large number of their friends. While internet “friends” helped me maintain my sanity while I was home alone, it really wasn’t enough to stave off the loneliness. Most of my former friends didn’t even call any more since they felt awkward and didn’t know what to say to me. Once a month or so I would see my doctor, the nurse and the receptionist at his office. The only other physical contact with adults I had during that time on a regular basis was with my now ex-husband. However, as his way of punishing me for being ill and not being the person he wanted me to be, he would use the silent treatment against me frequently. Thus, I was living with a person who would not talk to me or acknowledge me for days or weeks on end, yet I was too sick to leave this toxic relationship. I was too chemically sensitive to have other people come into my house without giving me migraines. I was also too chemically sensitive to function in the world. It’s a horrid situation of isolation and loneliness that I wouldn’t wish on my worst enemy.

Loneliness may be a sign that some people are in need of themselves, but it’s also a sign that some people have been ignored and forgotten by their family and so-called friends. Some people may have spent ten years alone with themselves and have gotten to know themselves pretty darn well as I did. However, that won’t ever fulfill the need for socialization and love. There is a reason that isolation and solitary confinement are used as forms of extreme punishment in prison systems. They cause all kinds of physical and psychological effects such as warping the mind and causing delusions, hypersensitivity to noise and touch, insomnia, PTSD, and uncontrollable feelings of rage or fear. Isolation can also cause severe cognitive impairment, as well as impairing the immune system and lengthening healing time for those with health issues. As one article on the topic states, “They have proved that long-lasting loneliness not only makes you sick; it can kill you.” The reality is that while we all need to spend some introspective time, we also all need friends to survive. It doesn't just take a village to raise a child. It takes a village to be a healthy human being.

In my case, loneliness certainly was not because I needed to spend time with myself. Loneliness was a horrible side effect of having an isolating illness. Before deciding that loneliness is a sign that someone is out of touch with their needs, perhaps people should consider all the true causes of loneliness and how they might be contributing to others feeling isolated and alone.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

(Apologies in advance for the super long post!)

Three years ago when Jenny Lawson published her first book, Let’s Pretend This Never Happened (A Mostly True Memoir), I was still mostly homebound, not yet well enough to attend social functions. The night Lawson read at BookPeople, I threw myself a pity party as I sat at home staring at the clock knowing that just 20 minutes from my house there was an event happening that I wanted to attend but my health would not let me be at. It was crazy making for me.

This time around, my life is very different both personally and professionally. I am so grateful to be in a much better place. I’m still not able to do nearly what most people do on an ordinary day, but I am doing so much more than three years ago. Hence, I made plans to attend Lawson’s reading of her new book, Furiously Happy: A Funny Book About Horrible Things, switching custody nights and various appointments so that I would have enough energy to attend the event. Yesterday afternoon, my body tried to give me a migraine, but I wasn’t going to let that stop me from attending. I took the drugs I can take for migraines and headed out.

As I sat waiting to turn left onto Lamar to get to the bookstore, my stomach started churning with nervousness. Despite how much better I am doing, there’s always the fear that I will get to an event and not be able to physically handle it. I do still have to leave certain situations when the chemical fragrance is more than I can handle. After the issues I had last week around disability accommodations, I was really worried about what the Universe might throw at me. It’s still a physical challenge for me to get from point A to point B, and sometimes I just can’t do it no matter how much determination I have.

When I arrived at Bookpeople, the parking lot was full but mercifully the two disabled spots closest to the door were still available. Once in the building, I debated the stairs versus elevator issues I have, and I decided to take the stairs mainly because it was what other people were doing and since I haven’t been in BookPeople for 11+ years, I wasn’t sure where I was going. When I arrived at the top of the stairs at 6:40 for a 7 pm reading, it was already standing room only. There were no chairs available in my vision nor were there any places to sit on the floor anywhere within visual range of the podium. I approached a store employee and asked him if they had disabled seating; I let him know that I could sit on the floor but I couldn’t stand for the event. He asked if I had called ahead, and I had not because it hadn’t dawned on me to do so. I now know for next time! However, they had a few extra seats set aside as reserved for those who needed them. The reserved seats were in the first and second rows. At first, former Catholic that I am, I tried to sit in the second row (because Catholics never sit in the front row in church unless it’s the only available seating, and even then, sometimes they prefer to stand). However, I quickly discovered that I couldn’t sit in that second row because the seats were too close to the row in front of them and I couldn’t bend my legs at an angle that was relatively painless. So I moved up to the front row between another woman who was likely in her 20s or 30s and a senior citizen couple. None of them were loaded with perfume, thank heavens, so I was ok for the entire reading.

While we were sitting there waiting for the presentation to begin (15 minutes late), the older couple next to me were chatting with each other. To preface this, I have to say that I have issues around fame and people’s private lives being in the public eye. I had to do a great deal of personal work before I could be comfortable with having a website with my picture on it on the web. So part of me still feels strongly that what people choose to share publicly should be respected as the limit; paparazzi, reporters and fans should respect those limits. However, this couple next to me were talking about Hailey and Victor, Jenny Lawson’s daughter and husband, in a weird way that sounded like they knew everything about the Lawsons just from her blog. It was kind of freaking me out that I had managed to end up seated next to a couple of senior citizen stalkers who seemed to think they were actually part of Lawson’s life. It also was a reality call for me to recognize my own prejudice that stalkers are only young people. These senior citizens were teaching me otherwise.

Before the reading began, a BookPeople manager came over to our section with another employee and told us that he would be escorting us upstairs via the elevator to get our books signed first. I actually had not bought a book because I wasn’t sure if I was going to be able to handle the full evening and because waiting to get it signed at the last book signing I attended at another store was hard on my body. If I had known that BookPeople was aware of this kind of issue for the disabled, I definitely would have pre-ordered one; I now know that for future events as well. However, I’m actually grateful I didn’t order the hardcover because after listening to Lawson read two chapters last night, I really want to listen to the audiobook. I’m not a fan of audiobooks 99.9% of the time which makes this is an exception to my norm. Lawson also mentioned during her “no pants party” on Tuesday night that there is an extra chapter in the audiobook, so there’s that incentive as well.

When Jenny Lawson finally made her appearance, she looked around with grateful and amazed tears in her eyes and said, “Holy shit, you guys! There are so many of you here." She was greeted with a raucous round of laughter that along with her comment set the tone for the whole evening. It was a truly amazing crowd; I’d bet there were 250-300 people there. Lawson’s phone wouldn’t let her take a panoramic of the whole crowd because it was too big! (My leg is on the far right of the top photo; I’m cut out of it mostly, though.)

Lawson began by reading two chapters from Furiously Happy. After reading one in which she describes the advantages of passing out with a speculum in one’s vagina, she commented that she had been practicing looking up and making eye contact while she read about her body parts at the gynecologist’s office. When she actually did look up during the reading, she saw her grandparents listening to her read about her vagina. She then said, “Hi Granny and Pop-Pop!” and waved at the senior citizens sitting next to me. Oh. No wonder they sounded like they knew the Lawson family so well. They weren’t actually crazy stalkers after all! Not even once did it dawn on me that they might be relatives of hers even though she lives in central Texas.

Moving on to the Q&A session, Lawson began by addressing a question about parenting with mental illness; she gave a similar answer during her No Pants Party. She said that the amount of openness one can have with a child about one’s condition is going to depend on the age and personality of the child. Lawson said that her daughter Hailey knows now that she has mental illness, but Hailey knows that no matter how bad things are for Lawson that Lawson will always have time for her. Even if all they can do is watch Doctor Who or Miss Fisher’s Murder Mystery Series together on the couch, it’s still time spent together. Lawson does not allow her daughter to read her blog though many of her daughter’s friends do. Hailey does get to read anything written about her and has veto power about what is said. There are some things about Hailey that Lawson doesn't share because she doesn't want her to be tormented by mean 14 year old girls. When Lawson does share something to Hailey, she reads the blog entry out loud so she can censor the language in it. Lawson believes that most kids are far more perceptive than we realize when it comes to what is going on around them.

Another woman from the audience asked how one balances taking care of one’s self when dealing with a mental illness and still actually managing to get writing done. Lawson responded that a great deal of it is about respecting the need to not write at times. She admitted that writing about certain topics can be triggering for her, especially the darkest parts. At those times, she had to give herself permission not to write and just take care of herself. She said her editor helped her to see that sometimes the best breakthroughs for writer’s block come when engaged in recreation such as when she was refilling her creative cup such as watching Doctor Who or reading. In addition, Lawson mentioned the phrase, “If you can’t write, just sit down and write.” She said that while that used to make no sense to her, she’s learned that some days that she has to write stuff that’s not very good but which will eventually evolve. Lawson said she’s got a thousand pages of stuff that may someday actually be good enough but they’re not there yet.

On a lighter note, someone asked Lawson if there was a piece of taxidermy she really regretted not buying. Lawson said that she limits herself in that the pieces must not be too expensive, they must have died a natural death, and they need to be old. She said the one piece that she is still haunted by is a unicorn at Paxton Gate in San Francisco which is actually a French horse head. She said it’s not white like the typical unicorn but brown and actually rather jinky looking. The unicorn is missing some of its teeth and is “so messed up.” From there, Lawson went on a very long-winded and extremely funny diversion about her Bank of America credit card recently being put on a fraud suspicion hold because Victor had bought a taxidermied beaver for her at Paxton Gate while he was there with a friend. Any transcript of the story would simply not do justice to Lawson’s fabulous storytelling ability. She’s just one of those people you could listen to for hours while she talked about almost anything because she could find a way to make it funny.

When asked which author Lawson herself would line up to meet, she said that she still has difficulty doing this because she’ll get in line to meet an idol and then panics when she gets close to the front. She said she is a fangirl of anyone who manages to finish anything, but more specifically she loves Neil Gaiman whom she got to meet backstage at an event. She also loves David Sedaris but she hasn’t met him; her friend Dylan Brody opened for Sedaris and got him to autograph a book to Lawson which says, “Any friend of Dylan’s is a whore.” (See comment 68 here). Most of all, she would bring Ray Bradbury back from the dead because he really does it for her.

A more recent fan asked Jenny Lawson why she began the Bloggess. Lawson said that many years ago she was working at a non-profit in human resources ironically teaching people how to act appropriately. She had actually started writing as a child as an outlet for her anxiety disorder. Eventually another mom blogger in Houston decided to quit her job because that blogger didn’t think one could be a good blogger and a good parent. Lawson decided she must be the crappiest parent ever because she volunteered to not only write on that blog but to do it for free. However, she was frequently getting in trouble for what she wrote, so eventually she started her own blog where she could write whatever she wanted without censorship. She said she now blogs to read the comments because the humor from her readers makes her laugh quite often. (And it's true. While I generally abide by the rule "never read the comments," I love reading the responses on her blog.)

Lawson ended the evening with a great question from a man in the audience: “What do you think of The new Doctor [Who]?” Lawson asked if they couldn’t discuss something easier like abortion. After loud laughter from the audience, Lawson said that she is still getting used to him. She thinks that it is an interesting take on The Doctor, and he is “way alien” but doesn’t make a very good human. He’s definitely not her favorite, but for her the pinnacle was Doctor Donna. And with that, Jenny Lawson closed the Q&A and headed upstairs to beginning the signing portion of the evening.

After 75 minutes sitting in the same chair, my body was definitely ready to leave. So much has changed for me physically since just four months ago when I went to see Chris Harrison's book release. When I left the book signing this time, I could feel that my body was exhausted, but I wasn’t having many of the symptoms I had when I walked out of the last event. I didn’t go into a lot of pain last night (aside from the migraine I was already trying to fight off), and I slept really well-- no fibro flares or any other assorted misery. I am so happy that my health is finally returning to a place where attending events like this is a reality for me. It was a wonderful evening filled with great people watching an abundant laughter. I was also incredibly grateful to have a positive experience around disability accommodation thanks to BookPeople instead of the obstacles I’ve encountered in so many other places of late.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

This week, I have been working on preparing an October meeting for my Meetup group on jealousy. I asked members which topics were of greatest interest to them, and to my surprise, jealousy came out near the top of the list. Jealousy is not something I have dealt with at the levels other people have, so it took me a minute or two to think about when I have been most envious of others in my adult life. The first thing that jumped to my mind was paint envy. Yes, you read that correctly. I have spent the past 10+ years being jealous of other people’s colorful paint jobs in their homes. The walls of my house were painted right before we moved in 14 years ago, and they are a very serviceable and resellable white. However, after 14 years of dogs and kids and regular life, the walls are showing lots of wear and need a new coat of paint.

When my ex-husband and I made the decision as to who was going to stay in the house and who was going to move out, there really was not much of a decision to make. Because of my chemical sensitivities, it made the most sense for me to stay in the house that we’d spent thousands of dollars upgrading to make it safe enough for me to tolerate. It has electric appliances, has all hardwood and ceramic tile floors, and hasn’t had fragrance or chemicals used in it in 12+ years. Finding a house like that is a needle in a haystack, and finding another for me in our price range that meets my needs seemed like a very daunting task. My ex wanted to move to a new location to start over, and I really understood that feeling. I was jealous that he got to leave and I had to stay in the house where I’d felt like I’d been trapped for all of the years of my illness including the six that I was homebound.

As we began dividing possessions for him to take things with him, I asked if he would take the white dishes we had registered for as wedding presents. Ceramic dishes don’t usually need to be off-gassed, so this was something that I could get new and not have to worry about reacting to any chemicals on them. My ex agreed, and so I set forth in looking for new dishes. I knew I wanted Fiestaware, and I knew I wanted color. Lots of color. I told my kids that they could help pick out the new dishes I was going to buy. My older son jokingly told me he wanted orange plates with sharks on them. I told him I couldn’t help him with the sharks, but we could have orange for sure. He thought I’d gone crazy that I was letting him have his way with the dishes, but since orange was part of my plan, it was good by me! We now have Fiestaware in lapis, peacock, cobalt, plum, scarlet, tangerine, sunflower and shamrock. Our table is very festive!

For the first few years after my ex moved out, I could only do limited things to change up the house because my health was still struggling and my chemical sensitivities were still so strong. I rearranged furniture, hung some of my photographic artwork on the walls (which my ex didn’t like so I’d never had it up before), and did a few other little things to make the house feel different. It wasn’t as much as I wanted, but it was what I could do at the time.

This calendar year, my chemical sensitivities have lessened further. I finally hit the point where I could paint the interior of my house. I tested a few paints and determined that Dunn & Edwards’ Spartazero no-VOC paint was the easiest for me to tolerate. My daughter and I spent a few weeks debating colors of paint samples and finally settled on our choices. We bought paint, and as I have energy and time, my kids and I are slowly painting the house. We started with the downstairs bathroom and hallway, and the difference between white and peach paint was radical. All of us were so impressed with the difference. Today we started painting the laundry room a deep lavender. I find myself just standing there and staring at the newly painted walls in awe. I am amazed at how beautiful the color is.

So what does all of this have to do with jealousy? Yes, I was jealous of other people’s paint on their walls. But what I was really jealous of was the color in their lives. I felt like I was living my life all in white, just like my house had previously been. It was the safe choice. My life until a few years ago was the safe and logical choice, too. I was with a man whom I loved but who was not passionate about me. I hid from my metaphysical gifts. I didn’t explore things in the world but rather stayed within what were deemed safe margins. Now, I want color in my life. Not just my dishes and my walls, but my entire life. I am still rational and sensible, but I want to explore new ideas, new places, and new people. I want my life to be truly vibrant.

Sometimes examining the deeper roots of our jealousy can be very telling. It might seem like we are coveting someone else’s new sports car or their fancy house or their promotion, but perhaps there are deeper issues underneath the jealousy that we need to explore. Once we identify the true source of our jealousy, it becomes easier to work on the problem and create a situation in our own lives that helps us reduce our jealousy towards others.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

(This post is based on an Advance Reader Copy of Upside won through Goodreads’ First Reads program.)

As I read through Upside: The New Science of Post-Traumatic Growth by Jim Rendon, I had plenty of thoughts that didn’t necessarily fit in my official review of the book. The book certainly prompted some thinking and questioning on my part; I always appreciate it when a book stimulates my brain cells. Some of these questions I’m asking probably haven’t been answered by studies yet, so I can’t fault the author for not including things that don’t yet exist! The following are some of those thoughts shared in a rather random order.

- It wasn’t until very late in Upside that a divorce was mentioned among the case studies of those who have undergone trauma. However, I suspect that this representation is not accurate. Chronic illness and PTSD were major contributions toward my divorce, and I know I’m not alone in that. I’d be curious as to what the actual divorce rate is among those who suffer from PTSD as well as what the divorce rate is among those who suffer from PTSD but have come to a place of positive growth. Further questioning would ask how many people saw their divorce as a part of their positive growth (as I definitely do).

- As I read the chapter on family support, I questioned, “What about those who didn’t have family support?” I would like to see a study of how support for patients with cancer compares to those with other illnesses. Because Rendon focused on cancer, he may not be aware that other diseases actually can cause families to abandon loved ones. This certainly was my situation with extended family, and again, it was a contribution to the end of my marriage. In my experience with late disseminated Lyme disease which is legally diagnosed as fibromyalgia and chronic fatigue syndrome, compassion and support was not overwhelming. In many cases, friends and extended family abandoned me and my family unit. One extended family member pointed out to me not so subtly that two other family members with type 1 diabetes and gallstones had REAL health problems (implying that mine were not significant, real and/or valid despite the fact that I was homebound and mostly bedbound at that point).

- While Rendon completely failed to discuss the problems surround childbirth and infant loss as they apply to women, he did devote a chapter to a group of dads who have lost children. This is a rare perspective that is often ignored in our culture, and I appreciate that he shared this reality with the world. Too often, men’s grief is poorly processed and disregarded contributing to the ongoing problem in our society of men who are out of touch with their emotions including grief.

- I felt like the chapter on religion and spirituality was one of the weakest. From what was written, I suspect that the author does not identify with religion or spirituality and may in fact be hostile towards them. I felt like he neglected the major differences between religion and spirituality, for they are two different things. It is very possible to be spiritual without being religious. I also wondered as I read the chapter how many people with PTSD experience a radical change in their beliefs or spirituality. In my life I went from being Catholic to being agnostic to experiencing PTSD and becoming highly spiritual without identifying with any religion (and in fact shunning most of them). I suspect I am not alone in this process of spiritual growth that is a part of personal growth with PTSD. This spiritual growth I experienced is a far different experience than someone becoming more vested in an established religion or turning to their pastor for counseling.

- Rendon argues that support groups are instrumental in the personal growth of individuals because they allow those with PTSD to be with those “who get it.” On one hand this is very true. However, I am curious about the reality of support groups for a wider population. I actually found that the pessimism and negativity of many support groups were pulling me down and were impeding my personal growth. They weren’t “better-informed optimists” as Rendon writes. Instead, they were people filled with unhealthy attitudes, bitterness, and often ignorance. I switched to digest for many online groups to avoid reading the posts of the worst offenders; some groups I left altogether. The two health related in-person groups I tried attending, one for those who had lost a baby and one for those who were chemically sensitive, I quickly left because the energy in them was awful. My better-informed optimism did not fit there. Thus, I would be curious about studies that showed that support groups actually have an ability to hamper personal growth rather than assist it. My experiences show that this is a potential reality.

- I cringed at the idea of 46 pills being a lot as Rendon dramatically presents when discussing a cancer patient. I currently take 14 Western medical pills per day plus 65 pill supplements, seven doses of liquid supplements, and a nebulizer treatment per day. At times my pill total has been well over 100 a day. This is what it has taken to get me functional and to continue to heal. I look forward to dropping back to “only” 46 pills and then the day when I need less than 20 per day to maintain my health. Again, if Rendon had talked to people with other health issues outside of cancer, his perspective would have been broadened and enlightened in many ways.

- Rendon has an implicit (and very valid in my opinion) judgment of how deficient psychological treatment is for soldiers and vets with PTSD. He also notes how others involved in other traumas also received very little or no psychotherapy as part of their recovery processes. It would be great to see what the studies show about why this happens other than the lack of funding for mental health care that is an endemic problem in our nation.

- I appreciated the way Rendon approached the topic of “gratitude as a way of life.” As I’ve noted in another blog post, gratitude is the only way I got through many days when my illness was at its worst. I think most people who have not undergone a major trauma understand what gratitude really is and what it can do for us.

- The chapter on activity and exercise as healing was very frustrating to me. I think this is a concept that is fairly well understood in our society as almost all less-than-informed healthcare practitioners I have worked with over the years have pushed exercise as one of the main solutions to healing. However, there is an important distinction between using exercise during a time of hellish illness and using it after one has regained significant health. Rendon discusses women who have survived breast cancer and now row together; he mentions but does not dwell on the fact that they could not have done this kind of activity when they were in the worst phases of their treatment. That distinction is very important for those undergoing health trauma because the overwhelming pressure to exercise when they are too sick to do so can be very emotionally defeating. As someone whose Lyme disease has caused chronic fatigue syndrome, I have had to deal with the conflict that exercise can actually cause more damage than good a great deal of the time, and our society does not seem to understand that because it is so pro-exercise as the cure to all that ails you.

- I really loved that Rendon stressed the importance of not pushing post-traumatic growth on those with PTSD. This book would have been devastating to read in the worst years of my illness; I was not ready to hear its message. I definitely would not give the book to someone who was at a point when they were at rock bottom. The lesson of “bitter blessings” is one that each person has to come to individually on their own time.

- When discussing one person who has survived brain cancer, Rendon reveals the very unhealthy brave face platitudes that are a very problematic part of emotional health in our society. However, Rendon doesn't expand on the problem that "the brave face" ideology creates in relation to PTSD. Rendon writes, “[The patient with brain cancer] maintained a brave face, but beneath it all he was terrified. ‘He never once said, “This really sucks,”’ said [his best friend]. ‘But you could see it in his eyes, you could see him thinking, Holy heck what am I going to do?’” Society expects those with chronic illness to hide behind those brave faces. They’re expected not to show the pain they’re in or the suffering they’re enduring. If they do show that illness, that fear, that pain, that loss, then they risk losing those around them who are unwilling or unable to deal with the realities of health challenges including the possibility of death. This only contributes to the issues surrounding PTSD when one is expected to put on a brave face but is actually falling apart inside.

- I would be curious to see studies about those who manage to achieve positive post-traumatic growth without most of the key items that Rendon cites as contributory factors. I am someone who is lacking in extended family support. I was isolated and alone because of my chemical sensitivities. I was the person whom others looked at and said, “It doesn’t get much worse than that.” Yet somehow I have grown in ways I never would have believed possible. I wonder how other characteristics such as personality and intelligence factor in for those whom growth seemed to be unlikely to happen even according to the standards Rendon establishes.

- Finally, in the last paragraphs of Upside, Rendon writes, “And given that they came so close to death, that they lost so many things they once took for granted, they understand on a much deeper level, in a much more informed way, what it means to be alive.” This association of PTSD with facing death is a flawed one, and it’s something that contributes to a large portion of people enduring PTSD not seeking appropriate help in my opinion. Our society erroneously interprets PTSD to mean former soldiers or those whose lives were endangered. Yet as Rendon demonstrates throughout the book, for many people, PTSD does not result from a life threatening event. I would have added a clause to this sentence about how “some have come so close to death.”

(I do have another upcoming blog post motivated by Upside that I will link to once it publishes.)

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

One of the quickest ways to piss me off is to tell me directly or indirectly that my pain is not real. I’ve spent the past 12+ years living in chronic pain. I don’t function in the world in the way most people can because of that pain and the associated disabilities that come along with it. No part of my life has been untouched because of what I have endured. Yet despite knowing I am a much happier and better person now than I was 12 years ago, I wouldn’t wish the hell I’ve been through on anyone; the only exception to that is when someone tells me that my pain doesn’t exist. Then I would like those people to spend a month in my body. I would bet you anything that when they came out of my body after having spent a month literally walking (or unable to walk at all on some days) in my shoes, they would be singing a very different tune.

Today, I managed to let someone push this button of mine yet again. In a discussion about the overprescription of antidepressants in our society on Facebook, I put up a links to blog post I had written that talks about Lyme patients being erroneously misdiagnosed as depressed and put on antidepressants rather than the physicians actually looking for the real problem. I also linked another post I had written about how depression is sometimes caused by issues beyond brain chemistry but that most Western doctors are ignorant of those other causes. One of the people involved in the discussion, clearly not my lifelong friend, immediately responded that chronic Lyme does not exist and there’s no scientific proof that it does. Wow. You mean like this recently released study from a researcher at Northeastern University talking about the biological mechanism through which borrelia burgdorferi survives the standard antibiotic doses recommended by the CDC? That kind of evidence?

This is the point at which I hit the block button on Facebook. I have a zero tolerance policy for people who will directly attack me or my life. If you want to believe differently than I do, that’s your choice, but don’t tell me directly and rudely that my diagnosis doesn’t exist and that the pain I’m in isn’t real. What was most stupefying to me was that this person stated that she has a mental illness that requires antidepressants. I would bet that at some point at her life she has been told that she just needs to pull herself up by her bootstraps and she’ll be fine. Mental illnesses are still not accepted by our society, and they are poorly understood. However, that doesn’t give this woman the right to turn around and tell others their diseases don’t exist either. Compassion to all who are suffering is appropriate even if you don’t agree with their diagnosis or choice of medical treatment.

The cyberbullying that our culture continues to foster in this regard is amazing. So many people believe that they are anonymous on the internet. They don’t have a problem spewing hateful words and demeaning obscenities at total strangers. Somehow the internet creates a situation that causes people to forget their basic manners. Most of the time strangers are polite to each other in public, but the internet removes that civility and results in a great deal of anger and pain.

Last week on The Bachelorette: The Men Tell All, host Chris Harrison and bachelorette Kaitlyn Bristowe addressed the problem of cyberbullying. Bristowe has made choices that not everyone agrees with this season, and she has been the recipient of a lot of vitriolic criticism as a result. During the show last week, Harrison read some of the worst of the tweets that Bristowe has received including death threats. As he read the tweets (with the usernames blacked out to protect the not-so-innocent), Bristowe’s eyes filled with tears. A great number of the comments on Twitter at that point were in support of The Bachelorette’s decision to address cyberbullying. However, many were not. Even some people whom I usually find to be fairly level-headed and rational disparaged the decision to discuss this topic. I read quite a few attacks on Harrison for “torturing” Bristowe by reading those comments out loud. From what I can tell of Harrison, he is a genuinely nice guy who did not pull this discussion about cyberbullying out of thin air. I’m positive he had Bristowe’s consent before he started especially based on the quiet comments he made to her as they went to commercial break. Bristowe’s genuine tear-filled response was important for America to see even if (or especially because) it makes us uncomfortable. Those users on the internet whom the cyberbullies are attacking have real feelings and real emotions. The tears and pain are real, too. The mere fact that so many people bristled against this discussion shows how desperately it is needed. If television stars and societal leaders aren’t willing to speak up against this kind of bullying behavior, change will be much slower in bringing about its end.

I’ve mentioned before that I left online dating, tired of the rude behavior and horrid comments about overweight women. What was clear to me in the world of online dating and again today on Facebook is that cyberbullying is real. Compassion is sorely lacking on the internet. Our world is full of so many wonderful reasons for living, and the internet brings about so much positive change in the world in ways that couldn’t have happened before its existence. It is long past time for that change to include an end to discriminatory words, hateful posts, and demeaning responses. We can be better than this as a society.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

Consumer Reports recently issued a statement advising families with children under six to stop buying toxic laundry pods. The report cites a two year, 17,000 incident survey where children were injured from “swallowing, inhaling or being exposed to the chemical in the detergent pods.” Studies like this should make the average consumer pause and think: If the chemicals in the detergents are enough to cause serious injury to children merely from being exposed to them, then is it really a good idea to be using them on clothing that we wear and sheets we sleep on for a total of almost 24 hours a day?

It’s true that water rinses out a large portion of laundry detergent, but if you take your clothes and put them in the washing machine with no new detergent, you will be amazed at the amount of soap suds that arise. Generally speaking, manufacturers of laundry detergents recommend using far more soap than in necessary. I only use one quarter to one half the recommended detergent amount, and I still can get suds in my machine when putting a theoretically clean load of laundry back in the machine. Residue is designed to stay in our clothing to give them the "fresh" scent that manufacturers tell us we want to smell in our clean laundry.

I never really thought about what was actually in my laundry detergent until I got sick with late disseminated Lyme disease which caused multiple chemical sensitivities. I understood that some laundry detergents were far more harsh than others. Tide causes contact dermitis issues for my dad. I used All Free & Clear for my family because it was what most dermatologists recommended for those with sensitive skin. We avoided “baby” formulations or brands like Dreft which contained fragrances that are likely to cause skin irritation and which aren’t actually better for babies. They’re just marketing gimmicks to sell more expensive detergents. But the fact that all of these mainstream detergents and their competitors contain chemicals made from petroleum products was novel information to me. I began to ask why would I want to put that in my clothes that went on my body.

However, once I realized how sick pesticides, cleaning chemicals and other synthetic products were making me, I began switching my family to natural products in an effort to maintain a modicum of health. When we switched to Seventh Generation Free & Clear, my ears no longer clogged up so terribly. Previous to the laundry detergent switch, I had to take pseudoephedrine 24 hours a day or I couldn’t stand up straight because the fluid in my ears made me so dizzy. Yet when I switched laundry detergents to a natural formula rather than a petrochemical one, I solved the “allergy” problems I had dealt with for the past 10 years that no doctor had found a solution for. I no longer had problems with my ears being full of fluid.

I now strongly dislike all synthetic detergents. They are petrochemical based, and none of them are really all that safe despite what their manufacturers tell us. Their components are highly toxic to my super sensitive nose which acts as my first line of defense against such things. I have a hard time being around people who use heavily scented laundry detergents in areas without good ventilation; even All Free & Clear or other free and clear petrochemical detergents aren’t the best for me to be around for extensive amounts of time though it is still my preference for those who insist on using mainstream petrochemical detergents.

When you wash your clothes, start thinking about what is in your laundry detergent. Begin looking at the list of ingredients. Read the warnings. If you are feeling ambitious, look online for the material safety data sheet (MSDS) for your detergent. See what warnings are attached to it. What can the chemicals in it possibly do to your body and to your loved one's bodies? Medical science has proven time and again that we absorb a lot through our skin which is why there are nicotine, pain, and birth control patches. Do you really want all of those toxic laundry chemicals going into your body all day every day?

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

A friend recently apologized to me for having used soap at a house where she had previously been. She said that the soap reeked even though the label said unscented; it was strong enough that it was bothering her. She didn't understand why that was. Unfortunately, this is an issue I'm all too familiar with and have had to explain to others before.

In the commercial market of the United States, unscented products don't actually have to be unscented. What unscented means is that there is no obvious flowery fragrance to most people's noses. However, to those who are sensitive, there is fragrance, and if you look at the label, there is fragrance in the ingredients. What unscented can mean is that the company has created a product that has an odor to it, so it has added a masking fragrance to make the product smell more neutral. This masking fragrance is how they define unscented, though it's certainly not what most of us would consider unscented.

So how does one get a truly unscented soap (or detergent or other body product)? The label needs to read "fragrance free." This will almost always guarantee that there is no synthetic fragrance added to the product. There may be natural essential oils added to create scents, though, which can be a problem for those with strong chemical sensitivities. Be sure to read the label carefully to see what is in the product. It's amazing how many products, including medicines like hydrocortisone creams, contain synthetic fragrance despite the fact that 15+% of the population is sensitive to fragrances. 

If a company does not fully disclose a product's ingredients, including what is in the fragrances themselves, consider whether or not you really want to use products from a company that is not honest enough to tell you what you are putting in or on your body. We absorb a great deal through our skin, and many fragrances contain carcinogens and other toxins. However, labeling laws don't force companies to list the contents of "fragrance" which means we don't know what we are putting on our skin. 

For my family's part, we do not buy or use any product that contains synthetic fragrances. Because I react strongly to synthetic fragrances due to multiple chemical sensitivities, this was a choice we were forced to make for health reasons. However, as one person told me many years ago, we're all chemically sensitive in some way. It just depends on whether we get migraines or fibromyalgia flares now or cancer in 20 or 30 years from the toxins. 

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

I don’t drink alcohol, but recently I had to make an expedition to the local booze store to buy more vodka as I had run out. This was the first time in my life I had ever bought alcohol despite being almost 41 years old. Previously, my ex-husband had purchased it for our household use, and I’d finally run out of the big bottle which he’d bought many years ago.

So what do I do with the vodka if I don’t drink it? For starters, I clean with it. Vodka has great antibacterial properties yet is a non-toxic liquid that doesn’t bother most with chemical sensitivities (at least if they don’t drink it). So I keep a spray bottle of vodka by the kitchen sink, and any time we scrub the kitchen counter especially after cutting up raw meat, we spray it down with vodka on the first pass.

I also keep a spray bottle of vodka in the bathroom, and my ex-husband did the same. We use it as deodorant, again because of the great anti-bacterial properties it has. The bacteria in our armpits are part of what create the body odors that our society doesn’t enjoy. Using vodka as a deodorant helps kill the bacteria and reduce the odors. For me, I am able to just use a vodka spritz most of the time (along with soap and water in the shower, too). My ex-husband found that for him, he needed more. The safer, natural deodorants were not strong enough alone to handle his body odor. However, if he combined the deodorants with the vodka, he was able to get a workable natural solution.

Theater companies often use vodka to spritz the costumes between performances. Rather than having to professionally dry clean costumes on a daily basis, a complicated, expensive and often impossible task, the vodka is used for its deodorzing properties to keep the costumes, worn by the actors under very hot lights, from reeking after a long series of performances. So too can vodka be used to spritz up ordinary clothes that aren't too scented. Simply spritz the area of concern and let hang to air dry.

I find it very amusing that my children now think of vodka as an antibacterial. At one point, one of them asked me, “Do people actually drink that stuff? Why?” I suspect I’ve probably unintentionally created some kind of Pavlovian response in them that vodka will forever be a cleaning agent that they can’t imagine using for other purposes! We keep the bottle under the kitchen sink with cleaning supplies or in the laundry room next to the detergents, probably the last place most people would keep their alcohol collection.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

When one struggles with major health issues, especially ones that have been as life changing as the ones I have faced courtesy of late disseminated Lyme disease, one learns to find the bitter blessings in places that one never would have previously found them. When faced with struggles and challenges, the silver lining almost always seems to be present if you can set your mind to find it. It’s that ability to see the “little” things that can make it possible to accomplish what seem like insurmountable difficulties on a daily basis. Those challenges include simple outings that most wouldn’t see as a big deal at all.

Earlier this week, my Bachelor/ette watching buddy in New York and I were alerted to a book signing with Chris Harrison, the host and one of the producers of the show, from our favorite blog on the show. The Barnes and Noble bookstore in Austin at which it was being held is only ten minutes from my house. As we messaged back and forth, my friend helped me get the enthusiasm to face the possibly insurmountable challenge of attending Wednesday night. Quite honestly, if the treatment I am undergoing right now hadn’t hit a breakthrough point on Monday, I couldn’t have gone; last week it would have been impossible. Next week it might be impossible again, but on Wednesday at around 5 pm, I realized my health was actually going to allow me to do this.

However, I’ve had false starts with many events in the past. I don’t get my hopes up until I am actually engaged in the event. I know all too well that it could all fall apart before I get there due to health-based logistical complications. Furthermore, I haven’t attended an indoor event with a large crowd of random people in a chemically saturated environment since 2004. That’s 11 years. The last time I walked in a bookstore was also probably in 2004. While I’ve been able to do much more over the past two years than I previously could, especially than in the six years that I was homebound and the two that I was almost bedbound, I still had no idea if my body was going to be able to handle it. I was worried about parking (because anyone who lives in north Austin can tell you that the parking lot at the Arboretum is weird and often overcrowded). I was concerned about too large of a fragrant crowd wearing perfumes that my body can’t tolerate, and I worried about the store itself being more than my chemical sensitivities could handle. As a result, I took my grocery list with me since Whole Foods is only a few blocks away. Then, if I had to leave without attending the book signing, I would not feel like the effort of getting dressed and heading out was a complete loss. I’ve learned from past events that this is one of the things I need to do to find a silver lining when an event falls through for me.

When I arrived at the parking lot, all of the five or six disabled spots were taken, but someone walked up to his car in one of them as I pulled up. I offered gratitude to whatever higher powers gave me the closest possible parking spot and headed in hoping that was a sign of good things to come. It was. I was able to tell from the parking lot and the noise level when I walked in the store that the crowd was not huge; at that point it was probably only 50 people though by the end of the night it was likely closer to 125. Feeling confident, I bought a copy of The Perfect Letter, and then headed to the second floor area where the signing was taking place. Here I met the first challenge of the evening: The escalators to the second floor were either broken or turned off. So I was left with a choice: Either walk to the far end of the store where the elevator is and then traverse back to the gathering area, or climb the escalators manually. Which was least taxing on my body? Since my knees weren’t in bad shape last night, I opted for climbing the escalator which my body handled.

Upon reaching the second floor balcony area, I faced the next major challenge: There were no more available chairs. It was already standing room only with about ten people mulling around. Given the pain and issues in my lower half of my body right now, standing right now for more than about five minutes is a physical impossibility for me. I approached an employee, let her know that I am disabled, and verified that it was ok to just sit on the floor. I’ve been at other events at other locations in the distant past where employees get very snippity about fire marshall rules and not sitting: SRO means literally standing. However, this employee didn’t seem to care, so I sat next to a bookcase where I could get partial back support. In retrospect, I wish I’d brought my backjack, but it’s a lesson learned for similar future events I might attend. At past points in my life, I would have been very self-conscious about the fact that I was the only person sitting on the floor, but after so many years of bodily limitation, I’ve learned to do what I need for my body and ignore any judgment, verbal or nonverbal, that comes my way.

After Chris Harrison spoke for an hour, the area was rearranged for the actual book signing which was done in order of wristband grouping. I was somewhere in the middle of the crowd, but there was no way I could stand in the line to wait. I approached the employee who was the gatekeeper for things, let her know my situation, and asked if I could go sit in a chair until it was my turn. She was quite friendly and willing to accommodate; I know she’d seen me sitting on the floor through the earlier part of the event. When my group got to the front of the line, I let her know that I was willing to wait until the end of that group if she would just call me up when it was my turn. Most mercifully, she immediately plopped me at the front of the line at that point since I’m guessing my face was starting to show my pain and fatigue levels at that point. I got my photo (above) and my book signed and headed out, walking back down the escalators.

The recovery process began when I got to my car as I had to just sit there for a few minutes and let my body decompress from the work it had just done for me. Once I got home, I began doing the things I have to do to support my liver in detoxification to ensure that I wouldn’t get a migraine or a fibromyalgia flare from the event.  By the time I headed to bed two hours later, my body was very cranky about what I had put it through, though after an hour of in ice pack on the worst pain, I was able to fall asleep. The next morning my body was very sore, but I can’t tell how much of the pain I have was from the event and how much was from the therapeutic treatments I had on Wednesday morning.

So after all that, was it worth it? Absolutely. I picked a great speaker for my return to book events. It’s not always the case that someone who is a good author or a great tv star makes an equally entertaining public speaker, but in this case, Chris Harrison is just as successful in front of a crowd as he is in front of the camera. I never know how much other people perceive of what I pick up on, but to me, it seemed as though Harrison was actually a bit nervous for the first few minutes as he began talking. By the time he switched to the question and answer part of the evening, Harrison was totally in his element. The fabulous sense of humor that we see glimpses of on The Bachelor/ette came through loud and clear as he talked extemporaneously on whatever topics the crowd quizzed him on. Harrison also maintains a grounded sense about him despite the circles he travels in. When he discusses people such as Matthew McConaughey or Nicholas Sparks, he isn’t dropping names or showing off. He’s just talking about the guys he’s spent some time with.

The evening was filled with a great deal of laughter, and I felt like I came away from it with a better understanding of the behind the scenes efforts that go into making The Bachelor/ette. I would have loved to engage with Harrison about a few of the issues I have with the show, but given that I was on the floor in the back and that I know my questions aren’t the typical ones, I just chose to enjoy others’ questions instead. I was thoroughly engaged for the entire evening. If I’d had to pay an admission price beyond the optional buying of a book, it would have still been worth it. An evening with Chris Harrison makes for fabulous entertainment!

Part of why I enjoy The Bachelor/ette so much is because of the allure of the travel. The idea of international or even domestic travel is still a fantasy in my life, so watching others enjoy their travels gives me hope for when I am able to travel as well. Even though attending this book signing might seem like a small step toward travel to most, my closest friends recognize what a huge step forward it was for me in the long journey of my recovery. As part of that slow movement forward, I find great pleasure in rediscovering the world around me that I haven’t been able to engage with for so long. I would bet money that I was the only one at the book signing who found incredible awe and pleasure in the setting. Seeing so many books on the shelves was a truly amazing sight for me, almost as though I had never walked in a bookstore before. I am so grateful for this illness-induced perspective on life that lets me find the wonder in things that most people wouldn’t think twice about. This awe for our society and the world around us is one of the things I hope that I carry away from living with chronic illness and keep with me for the rest of my life.

UPDATE 5/28/15: I sent this post to the manager at this location of Barnes and Noble who was in charge of the event. He responded quickly and politely, apologizing for the first bookseller who did not follow the proper procedure for helping the disabled; he will be addressing the issue with her so that she is fully informed for future events. He let me know that there are always additional seats held back for situations like mine so that I should not have needed to sit on the floor. He also explained that the store has wheelchairs available for helping to get customers to the second floor area, a courtesy I would not have expected. Finally, he said that the escalators are always turned off for events like this because of noise issues but that they are easily turned on and off at a moment's notice for a situation like mine. I appreciate all of this information so that any future experiences I have at that store will be much more accessible for me.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance

When my ex-husband’s grandmother was in her late 80s, her health began to fail. She complained bitterly to me on one visit that she had to take TWO pills every day. TWO!!! For her, this was an unimaginable travesty. Given that I had to take two allergy pills daily at the age of 20, I was less than impressed by this horrific fate she was dealing with. However, it was a matter of perspective. She’d been in excellent health all of her life, but now she was facing decline. Two pills was symbolic of the end to her.

For those who deal with chronic illness, the idea of only taking two pills a day is a funny joke. Taking that few pills is no different than brushing one’s teeth: It's just a basic part of daily life. Right now, I take 13+ Western medical drug capsules per day. Then there are the supplements. Unlike Western drugs which are chemically based and therefore often quite small in size, herbal supplements are not compact. They often require multiple pills per supplement daily in order to get the necessary dose. I don’t even keep track of the total number of pills anymore, but it’s in the dozens per day. Whenever I see new practitioners, they look at my list of supplements and immediately declare, “You are taking too many things.” However, once we review the list and I tell them what each supplement is for and what side effects I have when I stop it, they agree that I shouldn't mess with the system I have going which helps keep my body relatively stable and decreases my pain levels.

Managing all of those supplements requires a system of organization that most individuals with health issues work out after a while. Opening a dozen bottles at every meal each day gets tedious. The typical pill keepers on the market are meant for someone taking only a few small Western drugs per day. They’re pretty pointless for someone using large numbers of herbal supplements. Early in my illness, a fellow patient showed me her technique for managing pills: An organizer she found at the hardware store for sorting nuts, bolts, and nails. I picked a similar plastic box organizer (pictured above), and it has become vital to my supplement management. These can be found at craft stores, organizer stores, hardware stores, and superstores. My supplement doses change regularly, so I prefer not to mete out more than five days at a time lest I have to redo them. On every fifth day, though, I sit down and listen to music for 15 minutes while I fill my supplement box. As I fill the box, I try to integrate mindfulness meditation into the process: I remember consciously what each supplement is for, and I ask for help in achieving its goal.

Keeping track of the doses of each supplement is also a task when one’s mind is filled with brain fog. My practitioners taught me to write the dose on the lid or label using a permanent marker. However, for those with chemical sensitivities, it’s often difficult to tolerate the chemicals in markers. An alternate solution is to write the dose on self-adhesive labels and stick them on the lid or bottle. I also keep an up-to-date list of supplements on my computer with doses so that whenever I see a new practitioner, I can simply print out my list of supplements and say “see attached” rather than trying to remember and cram everything onto two small lines on an application form. 

Chronic illness affects every aspect of a person’s life. Taking supplements becomes an integral part of life, one that can often seem like a burden. Finding ways to make the process a little easier can help relieve some of the resentment one feels about needing assistance in order to be semi-functional.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

Recently, the notification of the suicide by a patient with Lyme came across on a Lyme group I’m a member of. Unfortunately, this is not a rare occurrence. Lyme may not kill directly the way a disease like cancer does, but the hell it causes for the patients and their families makes suicide a common form of death for Lyme patients. Early in my battle with Lyme, I read this speech made by Joseph G. Jemsek, MD, FACP, AAHIVS made before the North Carolina Medical Board on July 20, 2006. It became deeply seared into my brain, and I have unfortunately found out firsthand how true it is:

I was in high school when HIV and AIDS were finally starting to be understood. One of my youth group leaders said to us at one point, “You kids don’t understand how big of a deal AIDS is going to be.” (We’ve all suspected that he died from AIDS-related cancer a few years after that, but for religious reasons, his true medical history was not given to the public.) AIDS was the most terrible disease anyone could imagine at that point. Yet only 20 years later with the rapid innovations in HIV treatment, a doctor who works with both HIV/AIDS and Lyme patients clearly states that the Lyme patients are the ones with the inferior quality of life.

Unfortunately, suicide is not uncommon among those with Lyme because the quality of life that Lyme and accompanying tick-borne diseases leave people with is so low. There are a variety of reasons that can lead to patients taking their own lives. First and foremost, Lyme causes horrible physical pain that leaves them living in a hellish existence. Many have difficulties finding doctors to prescribe adequate pain relief as they’re seen as drug seekers and/or because of restrictions due to the “war on drugs.” For many pain doctors who don’t understand late disseminated or chronic Lyme disease, they can’t tell nor do they believe how bad the pain really is.

Getting treatment for Lyme disease itself is also difficult due to medical politics around Lyme disease. The nearest medical practitioner to Austin who openly treats Lyme is in a suburb outside Dallas; the second nearest doctor is in Louisiana and is over a six hour drive away. (There are others who practice covertly within Texas, but one won't find them on an internet search.) When I was first diagnosed with Lyme, my chemical sensitivities were too severe for me to be able to travel out of Austin to find treatment which greatly limited my options. For others, their difficult financial situations prevent travel and seeing doctors who are out-of-network. Many years ago, there was a nurse practitioner who used to openly treat Lyme in Austin, but she now practices in Washington, D.C. due to Texas Medical Board politics. Both the doctors who treat Lyme and the patients with Lyme suffer greatly due to these political issues when treatment is difficult to administer and receive.

The fatigue that accompanies Lyme is debilitating for many. At the worst of the illness, I wanted to end my marriage, but I could not because I literally could not take care of myself. I required a caregiver to buy me food and prepare it for me quite often. I couldn’t drive myself to the doctor. I couldn’t walk to the mailbox to get my Netflix discs (before the days of streaming) to keep me entertained. If I’d left my husband, I would have lost custody of my children because I couldn't have taken care of them in any meaningful way. Without my children, I would have lost everything that was important to me at that point and I would have had no reason to keep living.

Many Lyme patients are put on drug such as antipsychotics and antidepressants which carry suicide risk warnings. When I first began having severe Lyme related symptoms, my caring but misguided primary care provider decided I was suffering from postpartum depression and tried to convince me I needed an antidepressant. That is a fairly typical for most people who are dealing with the overwhelming symptoms of Lyme: Their doctors decide that this bizarre and long list of symptoms they are reporting must all be in their heads. Rather than pursuing testing and realistic solutions, the patients are put on drugs that have a potential to do more harm than good. The antidepressant that most doctors chose as a first line of defense is one that subsequent genetic testing has shown that my body cannot detoxify. Thus, taking that drug could have made me very ill or even suicidal.

Lyme can also cause mineral imbalances that cause emotional instability: I've experienced this personally when a sudden zinc deficiency cause a severe round of depression and crying. Imbalances in brain chemistry can happen with Lyme patients as well. Unfortunately, most practitioners aren't looking to find these simple-to-treat causes of depression and so patients don’t get the supplements they need to remain stable. 

Likewise, the extreme lack of quality sleep that can accompany Lyme disease can lead to suicidal thoughts. During the worst years of the Lyme battle, I was only getting one hour stretches of sleep even though I was sleeping 12-16 hours a day. Continuous sleep deprivation can destroy one’s body and mind, creating all kinds of dysfunction. There's a good reason sleep deprivation is used as a form of torture.

Soon after I was diagnosed with Lyme, a friend with Lyme warned me of a severe depression that can accompany Lyme dying off. Another patient with Lyme also talked to me about it at a later date. The toxins released during a Lyme die off create a depression which makes the entire universe seem blacker than black. It is dark and awful; it defies description in ways that are unspeakable because of how horrid it is. It in no way resembles situational depression or minor depression that most of us have experienced at some point in our lives. During the Lyme induced depression, nothing in one's thoughts is accurate. I always knew that the hellish blackness would only last 48-72 hours, but there were times when I wasn't sure I would be able to make it through those few days of complete darkness.

It's not uncommon for friends and family to disappear into the woodwork over the course of a patient's Lyme struggles. When I first began having symptoms and had no diagnosis, many of my friends and family members didn't understand. Some did things that were physically harmful to me even though my ex-husband and I asked them to stop: They thought my chemical sensitivities were just delusions. Others thought the whole thing was delusional because surely no one could have as many symptoms as I was having and still have a normal CBC. They also falsely assumed that doctors can easily diagnose everything in this modern day. One of the default responses of people is that when they don't know what to do or don't know how to cope, they abandon the person in need. This happens all too often to Lyme patients who after years of suffering find themselves down to only a core group of friends who really care, and in some cases, they might not even have that.

Financial ruin is not unusual for those with late disseminated Lyme disease. I was blessed to be married to a man who earns a very successful salary. He was able to keep supporting me when I was no longer contributing to the family economy. His job provided decent health insurance, and while it doesn’t cover anywhere near half of my medical expenses, it does still pay on some of them. I applied for and upon appeal received SSDI, but the cost of my Lyme-related treatment has been over twice what I receive from SSDI in most years, and that doesn't even include needing money to pay a mortgage or eating or any of those other pesky living experiences. Were it not for my ex-husband, I would not have been able to afford the treatments that got me well. Healthcare and wellness are still a privilege of the wealthy in this nation, not a universal right.

When watching an ILADS conference video a few years, one of the keynote speakers, a doctor who was one of the best known in the field, told those attending something similar to the following: “If your patients didn’t have PTSD before they got Lyme, they will have it by the time they reach your office. They will have spent years and thousands of dollars going to doctors who don’t believe them and who can’t help them despite the fact that they have very real health problems.” The emotional distress of PTSD from health-related problems cannot be undervalued: It alone is enough to cause depression and suicidal idealization. This doesn't have to be, though, and it shouldn't be. If doctors were educated on Lyme treatment and insurance companies were willing to pay for it, the quality of the lives of patients with Lyme would increase rapidly. Instead, however, many Lyme patients are left broken, broke, and alone at the end of their battle. Is it any wonder that they choose suicide over a life of continuing struggle and pain?

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

(As always, I am not a medical doctor. This information is based on my personal experiences and should not be substituted for medical diagnosis or treatment. Please speak to your health care providers about your personal situation.)

Health issues go through popular fads just like foods do. The latest food cure-all at one point was açai; goji berries got prime billing for some time, too. Kale and chia have been the health food darlings for a while now, so it’s about time for a new “miracle” food to be marketed. With regards to healing trends, vitamin D deficiency was all the rage for several years. It truly exists, and solving it helps many people. However, just because it gives some people relief doesn't necessarily mean it is the root of the problem. It’s often just a symptom of other larger issue.  

The most recent health “fad” that I've seen in this regard is the MTHFR genetic defect.  There are actually multiple genes that relate to this detoxification process, and I have two of the most common defects involved. I can’t tell you how many people have approached me absolutely certain that they've discovered the root cause of my health issues and how I would be miraculously better just by switching my B vitamins.  This is not news to me, and no, it was not a miracle cure.  It actually didn't make any impact at all upon my health in the grand perspective of things.

Any good holistic professional will already be aware of MTHFR defects, and most will be able to recommend B vitamins that are in the correct form for those who have MTHFR defects. In my case, we actually didn't do the genetic testing until about a year ago; we just correctly presumed based on my symptoms that I had the defects and treated me appropriately. The only reason we ran the tests when we did was because they were included in another genetic profile that my pain specialist wanted to run.

While many people believe that MTHFR defects are the cause of health problems, I believe they are often a symptom of a larger issue. I suspect (but cannot prove) that this is an epigenetic situation: Until an insult to the body occurs, the methylation problems don’t manifest for many individuals. In my case, it was Lyme disease that activated the problematic genes and left me with major detoxification issues.

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

Back on March 9th, I was jolted awake during the night to receive a message from higher powers.  I saw a symbol that I think was representative of a car battery not working.  I knew when I saw the symbol that my car battery or alternator would be going out soon. This alone is not shocking. My car burns through 60 month batteries every 12-18 months.  It’s the first time I've gotten notice about it, though. So I began parking my car facing out in the driveway so that it would be easier to jump or tow. Usually my car won’t start first thing in the morning if this is going to be an issue.

Jumping forward to this week, my oldest son came back from a spring break trip with influenza B.  Within 24 hours, I had succumbed as well.  Any time my kids or I get sick, I check in with higher powers as to what would be the best treatment path for us.  For my son, it was a goldenseal blend plus vitamin C.  For me, I got told I needed vitamin D plus other things that I am already on because of my Lyme treatment.

Two days into the illness, I went to see my chiropractor.  We’d texted beforehand, so he knew I was coming in with the flu; he knew as I do that chiropractic work makes it much easier for my body to fight whatever it is up against.  The session went well and was not unexpected for me:  My body was more interested in talking about the Lyme that was rapidly dying off because of the fever the flu is inducing.  

On the way home, I ran into a local establishment where I had called in an order for several salads so that I wouldn't have to prepare foods over the next few days.  I was in the store for less than two minutes (and I took germ spreading precautions), but when I went back out to the car, it would not start.  I was feeling terrible and wasn't at home; this was not where I wanted to be stuck.  Mercifully, one of the employees was able to jump my car and chatted with me from a safe distance while we waited for enough juice to start my car.  

Five minutes later, the car died while I was going 55 mph on a major road coming home.  Thankfully, I was at the top of a hill, and when I got to the bottom of the hill, I was able to pull over next to an inlet area.  There wasn't enough power in the car for my flashers to even work.  The temperature was only in the 70s, but it was 100% full sun.  I grabbed my Kindle and went to sit over on the blacktop inlet.  Between my fever, the sun, and the blacktop, I was sweating up a storm for the half-hour until my ex-husband could get there and get my car going again.

I’m sure if outsiders were to listen in to my conversations with my spirit guides, many would think me a madwoman.  Most of us talk to ourselves, though not all of us get answers back from unseen others!  Once I got home from the whole ordeal, I complained to my spirit guides about how hot and sweaty I was.  Someone responded to me, “That was the point!”  Clearly they hadn't meant that I needed Vitamin D in a bottle:  They wanted me to get it straight from the source with a good deal of sweating included.  

What’s amazing is that after I napped when I got home, I woke up feeling WAY better than I had in the previous 48 hours.  All of that sun and sweat had done me good.  In addition, my body had been able to tolerate all the chemical exposures to the engine and exhaust toxins along this adventure.  Not so long ago, an event like this would have given me a fibro flare at a minimum and most likely a bonus migraine, too.  My liver is in better shape and is handling chemical exposures better.  

When crazy things happen around me, I trust that higher powers are involved and there is a reason for it all even if I can’t understand it all.  I now have a translation for that symbol I saw in my vision, plus I know that I can handle more than I previously could with regards to exhaust.  Moreover, this flu is serving a major purpose in my life of helping my immune system fight off the Lyme at a faster rate than it could previously.  Never would I have thought that I would be grateful for the flu or car trouble, but here I am, seeing these challenges as unexpected blessings in my life!

© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC

Up until several years ago, my sensitivities were so severe that I had difficulty tolerating even airborne unadulterated essential oils (EOs).  Since then, my body has healed enough that I am sometimes able to use EOs for spiritual and healing purposes, but I still don’t use them often and I don’t use them like perfume.  On those occasions when I do use them, I follow safety protocols to protect my health.

When I first was exposed to some of the multi-level marketing (MLM) essential oils such that are now flooding our society, I was instinctively repulsed by them.  I wasn’t sure exactly why, but I knew that the energy that was coming across was completely wrong.  In the years that followed, I’ve been able to discern and pinpoint more specific reasons why I had that initial and correct repulsion.

The first and foremost reason is that the sales tactics used by many agents of MLM essential oils are little more than fear mongering.  This shows up frequently in their sales pitches be it on Facebook, on their websites, or in Meetup groups.   Many of the sales agents bring up the horrific dangers of life in our world and then inaccurately argue that EOs are the solution to all of these problems.  While essential oils are extremely powerful healing agents, they are not the new miracle solution to everything.  Anyone who promises you a magic cure to everything should be held a distance.

Beyond the fear based tactics, I am dismayed by the poor education of many of the sales people for MLM EOs.  Most of these people have only had minimal training with essential oils and are trying to work well beyond their educational limits.  Essential oils can be incredibly dangerous when not administered properly.  While one can argue that these people are well-intended and want to help people heal, that argument is undercut by the fact that the more oils the salespeople sell, the more money they make.  Healing is only part of their goal in most cases.

From the lack of education stems more serious health related issues involving essential oils.  EOs need to be diluted properly.  If they are not, long term dangerous effects can result including permanent sensitization.  Techniques such as the Raindrop Therapy actually expose skin to unsafe levels of many essential oils, and the redness that many practitioners claim is detoxification is actually a reaction.  Likewise, inappropriately ingesting EOs can cause severe organ damage and even death.  Essential oils aren’t water flavorings!  (If you do suffer from an injury or illness due to essential oils, please report your problems here.)

Furthermore, most essential oils have not been approved by the FDA for use as drugs.  Thus, MLM essential oil sales agents claiming healing properties are actually in violation of national laws through some of their advertising techniques.  Recently the FDA warned two of the major MLM essential oil companies that they were in violation of these laws.

Finally, one of the most disturbing things to me is the deceit practiced by some of the companies and their founders.  This includes scientific proof of adulteration of theoretically pure essential oils with synthetic ingredients and the subsequent cover up of those findings.  A video of the deposition of one of the scientists uncovering the deception can currently be found here, but as threats of lawsuits abound, this video keeps being removed from the internet though the courts have already given permission for it to be published from what I understand.

As a result, I do not use or advocate the use of multi-level marketing EOs.  However, I do still support using essential oils, especially for spiritual healing practices.  So how does one go about doing this safely?  First of all, it’s always best to use a highly educated aromatherapist who has extensive hours of training.  In addition, one should look for objective scientific research on the safety of whatever oil one chooses to use just as one should investigate any new drug before taking it.  A great resource on essential oils is the safety manual written by Robert Tisserand.

© 2014 Green Heart Guidance

In many articles about decluttering and minimizing, one of the popular suggestions is that if you haven’t worn a piece of clothing in over a year, you should purge it.  However, in my life, I have found this to be very bad advice.  While I agree that generally we as modern Americans have way too much crap around our houses, having multiple chemical sensitivities (MCS) changes the rules of the game.  Individuals with MCS learn how to selectively hoard things that may be of future use.

MCS is a condition that is technically known as Idiopathic Environmental Intolerance; that translates roughly into, “We don’t know why your body can’t handle the synthetic chemicals that most people can handle.”  For me, a combination of genetics and Lyme disease have made it so that my liver has a great deal of difficulty detoxing the multitude of synthetic chemicals in the modern world. 

For those with MCS, new products provide health challenges because of the chemical off-gassing they do.  Off-gassing is the releasing of volatile compounds into the air (and thereby into our lungs and bodies).  A common example most people are familiar with is paint:  Everyone knows what new paint often smells like. Those are volatile organic compounds (VOCs) that you smell being released from the paint.  There is now no-VOC paint which is almost odorless, and it doesn’t have as many synthetic chemicals to release thereby making it more tolerable (sometimes) to those who are sensitive to typical paint.  It's not the smell that is the actual problem but the chemicals that are released:  Low odor paint can still be a huge problem for those with MCS because the low odor paint has masking chemicals added to cover up the more toxic smelling components of the other chemicals.

Many products that we buy release chemicals in the off-gassing process.  Vinyl or PVC is one of the nastier ones.  New cars are loaded with toxic synthetic chemicals (aka the new car smell).  Many finishes on furniture are created through synthetic chemicals.  So when a chemically sensitive person purchases most things, they must first off-gas the products in order to release as many of the synthetic chemicals as possible before trying to use the product near them.  If one doesn’t off-gas many new products, someone with MCS will likely get very ill from them.  It can take between days and years to off-gas products, and some things never truly off-gas completely.

Clothes are no exception to this:  The preservative “sizing” that manufacturers use in fabric is actually formaldehyde or similar chemicals which are extremely difficult for most with MCS to handle.  Likewise, there are chemicals used in dying the clothing, and there are chemicals used in processing the raw materials.  Some elastics have fragrances added to unsuccessfully cover the cheap rubber smell of them.  New clothing, unless it is incredibly well processed organic clothing, is toxic by default.  Washing the clothing eventually pulls out some of the chemicals, but how many washes it takes can vary widely by the clothing itself.  There are various tricks one can use to help accelerate the detoxification process for clothing such as using enzymes, vinegar, baking soda, hot water, and for non-red clothing, buttermilk soaks, but repeated washing in water and drying on hot in the dryer really is the best way to make new clothing safer for use.  I have to wash new clothing between eight and 20 times to make it possible for me to wear, and I have had some clothing that I’ve given up after 20 washes and passed it on to others who aren’t as chemically sensitive as me.

Buying used clothing is often not much of a help:  It can be even harder to get out fragrances and chemicals from petrochemical based detergents, fabric softeners and dryer sheets than it is to get the chemicals out of new clothing.  It makes me very sick to even try as those fragrances and chemicals release into the air of my home during washing, and so I gave up buying used clothing long ago even though secondhand clothing previously was my preferred way of shopping for both environmental and financial reasons.  I still will buy used clothing if it comes from another chemically sensitive person, but it's hard to find clothes that fit those standards!

One of the additional issues I’ve deal with in battling Lyme is massive weight fluctuation.  When I am doing well, I drop weight quickly and without effort.  However, when I am facing new health challenges, I gain weight equally easily and with no negative dietary changes.  Thus, I have clothes in my closet that range from size 8 to size 24.  I was settled comfortably into a size 16 for over a year until last March when suddenly I started dealing with pancreatic issues; my weight shot back up to a size 22 within a few months even with me eating less carbohydrates, no sugars, and no fruits.  It was (and is) utterly frustrating.  As we kill bartonella and eliminate parasites from my pancreas, my weight has worked its way back down to a size 18 and continues to slowly drop back off.

I had been just about ready to let go of my largest clothes in sizes 22 and 24 last spring when the sudden weight gain happened, and mercifully, I still had all my larger clothes waiting in storage buckets in my closet.  Had I not, I would have had to invest in all new clothing, plus I would have had to go through the hassle and expense of detoxing the new clothing.  Thus, for someone like me who deals with chemical sensitivities and fluctuating weight, holding onto clothing for more than a year makes a great deal of sense.

While I am working to minimize the amount of “stuff” in my house, my clothing collection is not something I am willing to purge.  For my life and for others like me, the advice of getting rid of clothing I haven’t worn in a year is well-intentioned but impractical.

© 2014 Green Heart Guidance

This holiday season, please think twice before you give scented products as holiday gifts.  Many studies over the years have concluded that between 11% and 30% of the population is sensitive to fragrances at some level; there are probably more who don’t recognize that their health issues are due to fragrance sensitivity.  Those people include Cindy McCain, wife of former presidential candidate Senator John McCain, who though she suffers from disabling migraines, still carried perfume in her luggage and made herself very sick when the bottle broke. 

Periodically, new studies confirm that scented products contain dozens of toxic chemicals that can have dangerous short term and long term effects (including being carcinogens).  These products include but are not limited to synthetic scented candles, air fresheners, perfumes, colognes, aftershaves, lotions, and more.  Those most at risk for short term problems are those with allergies, asthma, eczema, and migraines.  All of us are at risk for the long term problems.

I am one of those who is sensitive to fragrances, and I have been all my life.  I’ve always been at risk of breaking out into a rash if I touched a scented product.  Many years ago when I was a newlywed and not yet sick with MCS and Lyme, one of my new in-laws gave me perfume as a Christmas present.  I politely thanked her, set it aside, and mentally noted that I would send it to Goodwill as soon as possible.  The giver, however, kept pressing my then-husband to tell her how much I liked the gift.  He finally had to tell her, “Look, she’s sensitive to perfume.  She can’t wear it.”  While the gift was given from a place of generosity, it was one that had the potential to cause a reaction for me.

Since Lyme disrupted my health, however, I’ve become one of the estimated 1-2% who are severely reactive to synthetic chemicals.  I have a diagnosis of multiple chemical sensitivities (MCS).  My sensitivities are so severe that I can’t be in a room with a plug-in air freshener or a lit scented candle.  If someone gets near me wearing perfume, I have to get up and move or leave the room depending on its size or ventilation.  If I don’t, I end up with fibromyalgia flares, asthma attacks and migraines.  At one point, the chemical sensitivities were so severe that I became homebound because minor exposures would incapacitate me for days.

So this holiday season, as you think about giving scented products as gifts to others, consider whether or not those items really are the best choice for the recipient or those around them.  Scented products can cause short term pain and long term health issues.   As alternatives, consider attending a local farmers’ market, visiting a craft festival, or shopping at a holistic store.  Investigate options in those places for safer products including natural perfumes, candles, and lotions crafted from essential oils; better yet, consider fragrance free items that are far less likely to cause issues for the person receiving the gift.

© 2014 Green Heart Guidance

(As always, I am not a medical doctor.  This information is based on my personal experiences and should not be substituted for medical diagnosis or treatment.  Please speak to your health care providers about your personal situation.)

Late disseminated Lyme disease (also known as chronic Lyme) is a highly contentious diagnosis at this point: The CDC still does not admit that it exists.  As someone who has it, I assure you it does.  It’s maddening to suffer greatly from a disease that authorities refuse to admit is even an issue.  Late disseminated Lyme disease is Lyme disease that was not caught early on and treated; as a result, the bacteria borrelia burgdorferi has spread extensively through the body creating an infection highly resistant to treatment.

My legal diagnoses are for fibromyalgia and chronic fatigue syndrome (CFS), both of which I legitimately have.  However, for me, both the fibro and CFS are symptoms of the Lyme disease.  Treatment for me didn’t make significant progress until we began treating the true issue (a deeply engrained systemic bacterial infection) rather than just the symptoms (pain and fatigue).  A comparable analogy would be taking painkillers and a cough suppressant for tuberculosis.  They might treat the pain and coughing, but it won’t help you with fighting the infection causing the coughing.

In my experience, anyone I know who has been diagnosed with fibromyalgia, chronic fatigue syndrome or multiple chemical sensitivities (MCS) and has been tested for Lyme disease using the appropriate tests (see below) under the appropriate conditions has had results come back positive.  If you have any of these diagnoses, please consider speaking with a health care practitioner recommended by ILADS about Lyme disease testing.

Most people with these diagnoses mentioned above will not remember a tick bite which will keep them from being tested for Lyme.  However, only an estimated 30-40% of patients who have been diagnosed with Lyme disease remember a tick bite.*  Additionally, very few patients with Lyme had the classic bullseye Lyme rash.  In my case, my Lyme disease diagnosis was made fifteen years after a tick bite with a non-bullseye rash that had originally been misdiagnosed.  I had been suffering from fibro, CFS, and MCS for six years at that point.  Lyme is found extensively in ticks in Texas and across the nation.

So why are patients not diagnosed immediately with Lyme disease when symptoms appear and then later end up with other red herring health problems?  There are the issues of Western medicine missing the diagnosis initially.  But beyond that, in my personal theory, when bit by a tick transmitting the Lyme bacteria, most people have strong enough immune systems that their bodies can handle the insult with few side effects.  Their immune systems keep fighting the bacteria at a low and constant level with only a few side effects.  In my case, I initially had flu-like symptoms, but they resolved only leaving me with worsened allergies and frequent sinus infections for nine years.

So what causes the immune system to lose control over the Lyme and for it to become full-blown late disseminated Lyme disease? In most of the cases I’ve heard about, there is either a trauma or a hormonal event that disrupts the immune system’s control over the Lyme resulting in massive health issues.  In cases of trauma, it may be physical, emotional or sexual trauma including but not limited to an accident, a rape, abuse, surgery, toxic mold exposure, or a toxic insect bite. Moreover, the people whose immune systems are most likely to lose control after these traumas are usually (but not always) highly sensitive people as defined by Elaine Aron; others suffer from PTSD at some level.  In the case of a hormonal stressor causing the Lyme to flare, contributors include puberty, hormonal birth control, pregnancy, childbirth, lactation, and menopause.

Once the Lyme has settled into the body, a host of problems may occur.  If you have a great number of these problems and have not been diagnosed with fibromylagia, CFS, or MCS, you may also want to talk to a Lyme literate doctor (LLMD) about Lyme testing.  Symptoms include but are not limited to: adrenal fatigue, allergies, anemia (often quite severe), arthritis, asthma, any autoimmune disease, bipolar and other mental disorders diagnosed at an abnormally late age,  “brain fog,” chronic or recurring candida (yeast, jock itch) issues, depression, eczema, EMF sensitivity, food sensitivities (especially gluten intolerance), gallbladder problems, Gulf War Syndrome, hormonal problems, hypothyroidism, infertility, insulin resistance or diabetes, irritable bowel syndrome, low blood pressure, low body temperatures, low vitamin B12 levels, low vitamin D levels, menstrual problems (often serious enough to lead to hysterectomy), migraines, parasitic infections, sleep issues, swollen lymph nodes, and unexplained weight gain/loss.  Please note that not all Lyme patients have all of these symptoms:  I personally have not dealt with eight of these.  Likewise, if you have only had a few of the issues but have never experienced any of the other symptoms, it’s not likely you have Lyme.

Additionally, if you are a mother and you have had biological children since the time of your tick bite and the onset of your health issues, your children also probably have issues related to the Lyme.  The children of mothers with Lyme are often on the Autism spectrum, have food sensitivities, were highly colicky babies with reflux, and have allergies, asthma or eczema.  These children are also likely highly sensitive people.  Again, not all of those symptoms are required, and if you gave birth to your children before your tick bite, your children may not show any of these symptoms at all.

If you’ve read through this post and have seen yourself in what I’ve written, consider finding a physician through ILADS who will test for Lyme disease.  If you go to your general practitioner, s/he will run a Lyme test that has a 50% false negative rate rendering it statistically useless yet still commonly administered as insurance will pay for it.  Most insurances unfortunately will not pay for the expensive test from IgeneX which has been the best test available for quite a while.  There is also a newer yet still very expensvie DNA-based test available from Advanced Laboratory Services; this test was developed in conjunction with Dr. Burrascano who is one of the leading LLMDs.  If you decide to pursue Lyme testing, be sure to ask your doctor about whether an antibiotic challenge may help increase the accuracy of the test you choose to run.

*All statistics regarding Lyme disease vary widely due to a lack of serious study of the disease, a lack of sophisticated record keeping, and an underreporting and underdiagnosing of the disease itself.

© 2014 Green Heart Guidance