Chronic Disease choices

I remember hearing a few years ago someone talk about the reality that when we say "yes" to one thing, we say "no" to another. That isn't any truer than when you are sick.

Some of the choices I have to make each day:

- Whether to go to bed early or read to my son at night. I have a portable IV pump, which was supposed to make this a moot point, but after the night when I had a line full (yes full) of air, I decided the best thing was to stay still during my infusion. We put Kellen to bed, and then I start my meds, which means I finish after 10.

- Coffee or extreme fatigue. Kellen gets up between 6 and 7 every morning. Since I don't finish infusing until after 10, I often am awake until close to 11. I'm lucky if I get eight hours of sleep. Dan goes to school, and then I have Kellen. He's taking swimming lessons, so my only real option if I'm going to survive the morning is some form of caffeine. I have stomach problems so this only complicates those. It also means that I likely won't take an afternoon nap, even though I should.

- Pain or well, pain. Speaking of stomach problems, I get to choose between the types of pain I get to experience each day. I have chest wall inflammation (pleurisy in medical speak). I went to the ER several times for chest pain before I learned what was wrong. Advil pretty much reduces the inflammation so that I'm no longer in pain (at least that way). But if I take Advil, I risk stomach pain and causing further damage to my GI tract.

- Sugar or no. Because of the systemic overload of bacteria, a lot of lyme patients have trouble with things like yeast overgrowth, and as a result are encouraged to eat a low carb diet. The problem for me is that not eating sugar has led to hypoglycemia, which causes dizziness. I'm already dizzy enough, TYVM. I am currently on the "fuck-it-diet."

- Pixar or Bravo. I would just like to thank Pixar for creating such brilliant kids movies. They are actually quite enjoyable for adults. As much as it saddens me that Kellen watches so much TV, some days that's how we survive. We have already decided that Kellen will be getting more DVDs for Christmas because I know nearly every word to Cars. I'd love to find Lion King (though I think it's in the "vault"). We're also looking at Ratatoille and Aristocats. I'd love other suggestions. I used to have a great disney collection, but they are no longer in existence! (The movies we do have are Cars, Up, Nemo, Shrek (all 3), Toy Story, A Bug's Life, Tarzan, Happy Feet.)

--
On another note, several blogging friends have asked what they can do to help. I've been thinking about that, and I think the greatest thing would be cards. There is something about opening the mail to find a personal card that brings a smile to my face. It reminds us we are thought of. I used to have a large collection of cards, which burned up in the fire. I've been trying to decide if I should post my address or get a P.O. Box. Our address has been so publicized that I don't know if publishing it again would matter much. But I'm also a little nervous about doing so. More details this week. Thank you all for caring. The support I've gotten in the last couple of days has been overwhelming. Thank you.

It's not enough to just be alive

I apologize if the title is shocking.

I've been reading this morning more tales of Lyme and re-watched the trailer to Under Our Skin (which used to be available online but apparently isn't anymore).

Someone said it isn't enough to be alive. Oh how that resonated with me this week. There was a time where simply being alive was enough. I could appreciate the pleasantness of life just simply by being.

That's not enough.

Just being is too painful. My body hurts, my head spins, I feel exhausted both physically and mentally. Living for the sake of living is not enough for me. I have to find other reasons to live.

I was talking recently to another Lyme survivor on Twitter about good and bad days. She said something about counting the moments not the days or the weeks. That phrase has changed my life. I certainly am not yet able to count good months. I am barely able to count good weeks. I can sometimes count good days. But I can always count good moments. I am so used to quantifying my life more globally, so each day was good or bad. And when I strung bad days together one after the next, my life seemed pretty gloomy. Let's be real, it is pretty sad.

But no matter how bad my day is there is ALWAYS a good moment that interrupts the bad.

It might be Kellen giggling with me when we are singing on the couch. Or lying in bed with him asking to read the "Be Butt" book (belly button). There is joy in picking the ripened tomatoes off the vine or walking out to the mailbox to find an unexpected card.

This illness has made me painfully aware of how those moments can save us from our pain, our suffering. It's no longer enough for me to just be alive. I have to live in those moments, stringing one second of joy to another in hopes that I will create a necklace of days that turn into weeks and eventually into months.

Letter to Family and Friends

Has it really been over two weeks since my last post? Time just seems to melt, one day into the next into the next. Several of my symptoms have returned, and it was all I could do to hold it together for Kellen's birthday party. I'm now recovering from that day even though it's over a week later.

Last night I came across a post from Infectiously Optimistic with a letter to friends and family explaining her Lyme disease and the struggle she endures day after day (please read this if anyone you know suffers with chronic illness. It's really beneficial). I have been struggling lately with how to ask for help from those closest to me. As someone who finds care giving natural, I have a hard time with needing to directly ask for the support I need. I feel like I shouldn't have to explain how to care. But I'm learning that those expectations only breed resentment if I'm not clearer about my needs.

I'm borrowing some of the language from that post in crafting my own letter:

Dear Family and Friends:
I have late stage Lyme Disease.

"Late Stage Lyme Disease is a neurological disease, much like Multiple Sclerosis, Parkinsons, and ALS are. When a person is initially infected with the bacteria, the disease is not neurological in nature and is easily treated with a course of antibiotics, but if the infection goes unnoticed and is left untreated, the bacteria continues to replicate and spread throughout the body. The systemic bacteria is able to morph itself into a resistant form that can hide itself in places in the body that the immune system cannot easily penetrate, like the joints, eyes, and the brain. The patient then becomes a Late Stage Lyme Disease patient.

"I know that this information is controversial, and if you do a google search on it, you are likely to come up with conflicting information. The disease itself devastates a Lyme patient's life, but the controversy surrounding the disease makes it that much harder. Understandably, it breeds doubt amongst other doctors, friends, and family members of a patient. I like to explain it this way though:

"The way Lyme Disease is currently being handled is much like the way AIDS was handled when the AIDS epidemic first arose. Patients who were infected with HIV were doubted, because the infection was so rare, understudied, and controversial. The patients were denied treatment and made to feel as though they were crazy, and that it was all in their head, despite their obvious illness and failing bodies. One of the leading Lyme doctors on the East Coast was actually initially an HIV doctor, and diagnosed one of the first cases of AIDS in North Carolina. He stuck loyal to his HIV patients despite the controversy surrounding the disease. He now primarily treats Late Stage Lyme Patients. It is reported that unfortunately, Lyme Disease is shaping up to look like an even greater epidemic than AIDS. This doctor asserts though, that compared to the research that was being done on HIV in the beginning of the AIDS epidemic, Lyme Disease research right now is alarmingly elementary and rather non-existent.

"I'm sure that controversy exists in the early stages of any new disease or epidemic, because typically the initial reaction to something that we don't understand is to either fear it and avoid it, or ridicule it. Unfortunately though, as this happens, lives are coming to a screeching halt, much like mine has.

"When Lyme Disease moves from it's early stages to its late stages, the symptom list grows exponentially. Initially, a patient may have 2, 3, maybe 4 symptoms that are easily ignored. By the late stage of the disease, the official symptom list expands to over 57 symptoms. This may seem nearly impossible and like an exaggeration, but think of it this way: the brain is the control center for the entire body. If there's an issue in the brain, then virtually anything in the body can go wrong, because the brain is the commander of every organ, cell and function in the body."

I do not know when I was bitten by a tick, whether it was the bite in Virginia when I was ten or whether it was a bite when I was pregnant. I've struggled with bizarre medical issues since I was young and have had bouts of extreme fatigue that were inexplicable. But those episodes seemed to be controllable.

After having Kellen, my face went paralyzed, Bell's Palsy, seemingly benign. If I had known then that I had Lyme disease, I could have been treated with antibiotics and hopefully gotten better quickly. Instead, I was prescribed steroids, which is actually devastating to a Lyme patient as it provides an environment ripe for bacteria replication. Because of the fire, my diagnosis was even further delayed because it was easy to assume my symptoms were a stress response or related to my PTSD. Each day from November 2008-September 2009 I continued to get sicker and sicker as the bacteria ravaged my body, most notably my nervous system with profound dizziness, light sensitivity, peripheral neuropathy, shooting electric shock pains down my arms, migrating joint pain, muscle pain, and fatigue merely from waking up. In that time, I probably had thirty healthy days.

Lyme patients are often written off as head cases, merely imagining their symptoms. Why anyone would imagine this hell is beyond my scope of comprehension, and if you knew how badly I felt on a day to day basis, you would never accuse me of hypochondriasis or pretending to be sick for attention. By questioning my diagnosis, you create even further isolation when chronic illness is isolating enough.

Despite the pain in my body, I have continued to try to live something resembling a life. I know to some of you it seems that I am wallowing in self-pity, eager to share my pains with anyone who will listen. You don't see the strength it takes for me to get out of bed and take care of my son. There are days where my only goal is to be able to cook dinner. I endure great pain to live half the life that I imagined I would live at 28. When Kellen goes to the Little Gym, I experience increased dizziness because I'm so sensitive to light and noise. But it's important to me that he not sacrifice because of my illness. We have people over for football games because we enjoy it, and yet the energy I expend cleaning my house and cooking takes me several days to recover from, nevermind the dizziness that comes along with the noise. I can no longer do so many of the things I love (like reading and scrapbooking), so any activity feels like I've crossed the finish line of a marathon.

I know there are many of you who feel that we are neglecting you. My entire day is focused on surviving to the next day, and I'm sorry if I have hurt you or otherwise not been engaged in your life. It is not because I do not care (and I need to remember that just because I haven't from you that it is not because you do not care). As the other blogger noted: "A lot of the time though, when you're chronically sick, you're "out of sight, out of mind" because the nature of normal everyday life tends to swallow up those around you." And because of my illness, I am no longer engaged in normal everyday life with you.

There are also family members who don't understand why we don't make the effort to come over (more). They don't realize that there are days where simply getting out of bed requires incredible effort. I have to give myself an IV infusion everyday for two hours. I have to take my medicine out of the fridge one to two hours before my meds start. While you might not mind my infusing at your house, it feels like a hassle to bring my supplies with me, not to mention the inevitable reality that I will need to drive home connected to my IV. Additionally, if we are at your house, I have to spend more time corralling my son and making sure he doesn't break something or hurt himself. Ultimately it's just so much additional effort for me to go anywhere that we just stay home. On my good days (and hopefully weeks), I'm trying to make up for two years worth of projects. The reality is that I still have yet to fully move in to our house because I've been sick for so long. As I've said many times, we are more than happy to have you over as long as you don't mind the clutter that seems to overtake my house.

The doctor of that blogger said that this disease takes a village to overcome, both in terms of medical professionals and support. She says, "I also believe that at the end of the day, if the patient doesn't have their own village of supportive, accepting, educated family and friends to come home to, the puzzle is incomplete. You just can't do this alone." I know that I cannot beat this alone, both mentally and physically. I know that learning to ask for help is only one small part of my long journey in this life, and I am continually reminded that I need to seek out the support I need. I need you as a part of my village if I am going to come out of this on the other side.

Things you can do to support me:

- Educate yourself about Lyme disease. This is a very controversial disease, but I trust my doctor. No one would question me if the doctor said I had cancer. Please don't question this either. The doctors and patients are, in a way, unlucky to be at the forefront of this disease (possibly a major epidemic) because there is just so much that is unknown and treatment often feels like an arrow flying through the air in a dark room just hoping to land on the target... and if you're especially lucky the bullseye. The documentary Under Our Skin is a great start as is the book Cure Unknown.

- Don't assume that because I've had good weeks that this week is a good one. The worst weeks I've had have followed some of the best weeks because it's so mentally draining to have a bad day after so many good ones.

- Reach out. Chronic illness is, as I said, very isolating. The loneliness only enhances the depression that comes along with this disease. While I may not have the energy to go out to lunch or even get coffee, I need friends, whether you call or come over and hang out for a bit.

- Leave out the puppies and rainbows stuff. Positive thinking is great, but my sharing with you how badly I feel isn't negative thinking. It's just my sharing my struggle with you because I am trying so hard to get you to understand the pain I'm living with so that you don't think my laying on the couch is laziness or made up. I don't need you to tell me to think happy thoughts. If you do, I promise to annoy the heck out of you one day with the same rainbow up the ass crap, and I don't think you'll like it!

- Dinners. Evenings are especially hard for me, so having some frozen meals would be helpful.

- Other household help. Simply doing laundry takes an enormous amount of energy, much less weeding as my meds cause sun sensitivity. Any help is always appreciated.

- Patience. I do believe that I will get through this and get to experience health again. In the meantime, please be patient. If I'm short with you, I don't mean to be. I just don't feel well. If I cancel plans, please know it's not personal. If I don't call for months, I promise I still care.

This journey is hard. But I know I can't do it alone. I need you.

Be well.
Brooke