How are you liking Rifampin?

4 Days ago I started Rifampin in addition to my other antibiotics. I feel like ripping my own hair out.

It is honestly a luxury to complain about my emotional symptoms more than my physical ones. My heart palpatations have calmed down, my overheating is tolerable, lightheadedness not bad… I don’t feel great, but damn am I irritable.

With so much going on in the last few month I’ve learned to manage the demands of my virtual job, Lyme Warrior, and Beautycounter in addition to travel and family, but now that I’m home and things have slowed down I find myself stewing over the things I’m waiting on or the problems I can’t immediately fix. Maybe it wasn’t a brilliant idea to try to run a company while dealing with illness. I find myself really wishing I had some in-person friends to distract me but its become easier to work all day then to have close friendships while sick. I mostly blame this on not being able to drive.

I find myself closer than I have been in the last 2 years to being better but so disorientingly far from where I thought my life would be. Living on a mountain top with my parents working my butt off and scrounging for money for medical treatment wasn’t really the plan. There is no doubt to me I’m on my way out but maybe the drugs are making my cynical. In not so short, I really am not enjoying Rifampin but I am getting better.

 

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How are you liking Rifampin?

Chronic Beauty

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As I crack my eyes open first thing in the morning, I groan. Its another day, a day I don’t feel good, and worse, a day I need to do something. Regardless of the activity there’s always a part of me that is just too sick and tired to do what I need to do. However, today people are waiting on me. I drag my carcass out of bed, make breakfast with my friend, Lydia, who came down to help me. I whine through breakfast and pile myself into her car, arms stacked with supplements and detoxers to get me through the day.

 

We arrive at the studio and I try to pull myself together. We start walking supplies up to the second floor and the planning begins. In comes the photographer, hair stylist, and makeup artists and it takes off. Today is the first day of the Chronic Beauty photo shoot.

 

Chronic Beauty is an idea that came to me one of the millionth times someone commented how good I was looking when I felt like I was dying. I considered the opposite and imagined what I would look like if I looked as sick as I felt and I sure didn’t like that either.

When you have the flu, it is empathetic to tell someone they don’t look good. You are acknowledging their problems. When your illness is chronic, you don’t want to look bad, but you don’t want to look good either. So, I sought 12 women with different chronic conditions to tell their story of what being Chronically Beautiful meant to them.

 

As I was still trying to pull myself together, the day started rolling. Our first model showed up and the shoot began. Hair brushes and make-up brushes were flying while photography equipment was set up. We rolled through the prep and shoot until we stopped to interview our first model and ask her about living with Cerebral Palsy. “I’ve lived with Cerebral Palsy all my life,” she said. When we asked what her symptoms were like, she said she has none. “I don’t have any symptoms but I have to use this chair”. She said referring to her wheelchair. “People treat me well. They are usually willing to help me wherever I go. I work at the Y (YMCA) and I get to help the kids all day. It’s great and people are very supportive.”

I exchanged a glance with Lydia, with the same look of surprise at how opposite this was from our battles with illness. I found her statement of having no symptoms and frequent help completely intriguing. If given the time, I could have talked to her all day but the other models were arriving and the shoot must go on.

The day became a constant flurry of chatter and laughing, all the warm good vibes I had hoped to accomplish bringing all these women together. What was different about the room was this unspoken haze of empathy. No one complained of symptoms or even discussed it for the most part, just a quiet respect for each other and the knowledge that we were all fighting conditions that had changed our lives.

The day was chipper and fun. As always, the amusing wardrobe issues surfaced and having people’s noses tickled by makeup brushes kept us laughing. This was only broken by the times we sat down to interview the women and talk to them honestly about their lives. Many models gave stories I was more familiar with. Conditions that were not obvious and were disbelieved by their doctors, their friends, and sometimes their families. When you hear someone else with a chronic condition say “It’s hard”, it holds an entirely different weight than those words would have meant before I experienced chronic illness myself. I frequently wanted to hug the women speaking because I knew how heavy and hard their experiences have been that have lead them to where they are now. But realized they didn’t need my comfort to be strong and tell their story, all these women are warriors.

As the interviews rolled on, myself and Lydia occasionally looked down to pull the tears out of the edges of our eyes. It wasn’t how unfair the diseases and symptoms were, but the stories of how people treat you and how you have to pull strength from deep inside yourself to keep moving forward when it’s far easier to give up.

I could spend hours telling you about each of these amazing women but you will just have to wait for the calendar and footage. Leaving that day, I felt so humbled being around not only beautiful but some of the strongest women I’ve ever met. I thought, if this is only a few amazing women, I know there are a million other stories out there to be told. I encourage all women to start telling their stories, to be honest that there is almost nothing about illness that is easy. There are more than a few moments where you want to give up and the lows are things that people should never have to experience. It’s each person’s ability to keep overcoming those times of extreme illness and hurt and to continue to give and contribute to the world that I find to be the most amazing part. I hope people will buy these calendars so that they can look at it every day of the year and be inspired to face the issues they are dealing with and find it in themselves to overcome them. This inner strength is Chronic Beauty.

Proceeds from this Calendar and other products benefit research for these conditions.

We are all in this together.

http://lymewarrior.us/shop/chronic-beauty

Chronic Beauty

My Lyme & Autoimmune response

As many of you know, I have been treating with Jemsek Specialty clinic for over a year now. I have made a lot of improvement but as they tell me I will be entering my last round of intense antibiotics and I am still not my normal functional self, I have found myself moving to the belief that antibiotics are not the full solution to Lyme Disease.

I want to make it very clear that I am still an advocate of long term pulsed antibiotics. They have taken my life from couch-bound daily to being able to be functional around the house and having more and more good days going out. That being said, I think there is a large component of Lyme that is the autoimmune systems reaction to Lyme that we don’t understand. Like some people are allergic to foods, it is not that the food is bad but that our systems over react to it. I think the antibiotics have done a great job of killing the invaders but that much of my issues come now from my body being unable to settle back into its normal ways.

I will be finishing my last rounds with Jemsek, I have added in herbals, and I will begin DIV Ozone in October. My intent is to continue to use herbals to kill any invaders that antibiotics did not get while using Ozone and other alternative methods to calm my autoimmune issues. My new doctor is optimistic that I will be able to calm my neurological flares that keep me from driving relatively soon.

While all this treatment has been more expensive than I can afford, I am optimistic that it will all be worth it soon and I can return to a functioning lifestyle where I can do more to bring Lyme awareness and return to my career that has been left for dead over the last two years. I have to admit I am thoroughly exhausted from running from place to place trying to cure this disease and frequently struggling with finances, I feel closer to the end than ever before.

My Lyme & Autoimmune response

Life update – Things are coming.

Sorry for the lack of consistent good blogging. Its been a crazy few weeks for me and its just getting started.

I was going strong today till a herx snuck up on me and knocked me out. I took a few hours off to watch Ink Masters and detox. This was probably best because I leave for Pennsylvania tomorrow for a 36hr trip that I haven’t packed for. I will be doing my initial consult with a new Lyme doctor that I have high expectations for. For anyone following my medical saga, I will be continuing long term antibiotics with Dr. J but adding a new protocol on to that and my small assortment of herbals. I will update more details when I learn them Friday.

I have made some pretty big improvements recently. I’ve been able to stay out for most of the day sometimes with the photo shoot and then rested without huge repercussions. My herxes now seem to come on in intense short spans rather than the long miserable ones. I think this is better? I’m happy to report only one illogical emotional breakdown from symptoms this month so far. With Bartonella treatment coming up, I’m not sure that will hold though.

I am extremely hopefully that with new treatment, soon I will be able to drive myself again and re-claim some independence. For anyone dealing with Lyme, I don’t have to explain how huge this will be.

Till then, thank you so much to everyone who buys Beautycounter from me and buys LW products. Beautycounter sales allow me to get treatment and LW purchases allow me to create and fund larger and larger campaigns to further change. I feel like both are on the verge of some great things. ❤

Life update – Things are coming.