Bloody Lymey

A Blog About Living with Lyme Disease

Positive Attitude = Better Days with Lyme Disease

I had to repost this:

Thirty things to stop doing to yourself.

I think with chronic illnesses, it is natural to feel jealous of people who have good health. I think it’s natural to fixate on blame – blaming doctors for not finding it faster, ticks for carrying their biological warfare ….. It’s easy for us to reject new relationships because we don’t feel like we’re as much fun. It’s natural to feel sorry for oneself now and then. Sometimes we feel compelled to explain ourselves to other – why we “forgot” something or why we were unable to adequately complete an obligation of some kind. We try to “make” people understand. We look pretty good. We’re not skinny or wasting away. So we chirp on and on about the fatigue and weakness or pain or whatever the malaise du jour is.

This post, thirty things …. if I could do every single one of them on a given day, my life would be outstanding. The closer I come to doing all of these things, the better I am and the better my coping skills are.

Also, for this recovering alcoholic who is in AA – it’s a layperson’s list of a remedy for “stinkin’ thinkin’.”

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The 99% – Occupy Lyme Disease

I was thinking about the whole “we are the 99%” thingy.  This blog is based on my chronic illness:  chronic Lyme disease.  In the past year period, I have been bounced from health insurance policy to health insurance policy like four times.  I’m again in “deductible” land and I haven’t finished paying off my specialist for my last visit due to a deductible.  Mercifully my co-pays on my meds are manageable.  

My symptoms have been up and down and there have been some changes that make me think I ought to see the doctor again. I don’t know if Lyme has upped the ante or if there’s something new to concern myself with.  Lyme disease has shown me it is like a house of cards with causing auto-immune things.  From a strange sensation in my feet akin to jumping burning embers to the pressure in my head to the sudden changes in eyesight throughout the day to episodic incontinence …. I am worried.  I have a $500 deductible and Christmas is coming.  My bout with unemployment this summer set me back a little bit with my savings.  I can keep my head above water, but this fork in the road with my health and finances makes me think of other people in other states.  

Let me qualify that statement.  

I live in Massachusetts.  We are obligated to have health care.  If we cannot afford it, it will be afforded for us through Mass Health.  If it is not offered because we are part time or work for too small of a company, we can buy the often affordable Commonwealth Care.  Unfortunately, if we CAN afford it and it IS offered, we are forced to take it.  I’m glad for this because when my Lyme disease was in its early phases I was newly separated from my then-husband, working 30 hours for $10/hour and living with my mother because I couldn’t pay rent after childcare.  Talk about being the 99% ….

But if it wasn’t for Mass Health, my finances would be a shambles right now.  Or I might have solidified my denial – in the early days I was rationalizing my symptoms with “I’m getting older’ and “I have an energetic young boy and I’m a single mom and of COURSE I’m tired.”  If anything else could have talked me out of going to the doctor (and that could be just a few bucks), then I would have not gone I’m sure.  Some of those Lyme tests themselves can be a few hundred bucks – and let’s not touch the specialists and the doctor’s visits.  

So I’m thinking – what if I lived in California or New York or Alaska or anywhere else?  What if I was in that financial situation where my job did NOT offer insurance because they were small or because I didn’t work enough hours or I didn’t work there long enough or some other thing?  Massachusetts offers Safety Net if you get a job that offers insurance after a 3-month period or whatever the magic month is.  It didn’t get me into the doctor’s office, but if I was hit by a car or some other tragic and unforeseen circumstance then it wouldn’t have ruined me financially.  

With this in mind, why are people SO against the government giving us another option?  Why can big wig CEO’s in companies pay the same rates that the most fortunate of us can pay when other people are struggling, trying to scrape together money for their baby’s Ibuprofen because they have a fever?  Why are the top dogs with the top dollars treating their aging rich wives to plastic surgery while everyday people are shirking their responsibilities to themselves and their families to seek preventive medical help with an annual physical?  Why are the richest of the rich lounging in spas and getting their pores sucked clean with mud while the working class winds up with cancer because it wasn’t caught in time?  

I’m lucky.  I’m damned lucky.  Thank you, Massachusetts, for the healthcare.  I keep thinking where I would be right now if I had let it go longer.  

I had a rough patch last week with the exhaustion and pain.  Today the walk upstairs isn’t such a long walk.  I worked from 9:30 this morning until 6:30 tonight, cooked dinner, cleaned the kitchen up after, went to an AA meeting, and here I sit.  Thank God.  Thank God.  

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When Pain Shows….

Grarrrrr! I hate it when I’m gimpy. I hate it when my pain is noticeable.

Then comes the paradox – I love that people care enough to ask if I’m okay or what’s wrong, but I hate people noticing my pain. I bristle at the sympathy.

I went to see Stone Temple Pilots in Hampton Beach, NH recently and it was “general admission.” Nowhere to sit. I sat on the floor during the opening acts, knowing that my knees would hate me halfway through the main event.

Being hot in there, the bouncers opened the door. I could smell the ocean across the street and feel the cool damp air. It felt great at first and the air quality was wonderful to breathe.

After a while, my knees started to rebel. I alternated the weight of my body on each knee, trying to give each of them a much-needed break.

The sea air …. the sea air and standing…. woof.

By the end of the show, I was limping. Going down the stairs was a painstaking event. Gimping the three blocks to where we parked was embarrassing.

I think my pride hurt worse than my body. In fact, I know it did.

Maybe this is why my symptoms are coming and going. I have more “work” to do on myself. The inside self …. a part of me that anti-inflammatories can’t touch.

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Get Me Out of Me …..

There is no way to get out of my body, to get out of the pain. Astral projection is not feasible for me at this time. Especially after watching “Insidious.”

I no longer drink or do drugs. This is not an option for “getting out of myself.” I probably could have gotten a prescription for most anything at all, but opted to simply take more Motrin (per my doctor’s approval). My sponsor helped me clarify the fine line between what I “want” and what I “need.” What I wanted was the pain eliminated. What I needed was for it to be eased. More Motrin did the trick.

Nothing touched the nerve pain. Lyrica was on the table, but the side effects cited included fatigue and that was my worst lyme symptom. I opted to suck it up.

Sometimes, what I NEED is to get out of the lyme-induced emotional state. The best way to do this is to do something for someone less fortunate.

Having worked with the homeless, I was able to do this daily at work. Being an active member of AA, I am able to do this with newcomers or people struggling to stay sober.

In AA they suggest, “Move a muscle, change a thought.” Sometimes just going to a meeting helps. Sometimes just going for a walk helps (if my knees aren’t awful). Sometimes calling someone and saying “How are YOU?” and listening helps. Sometimes reading for a bit ….. or watching a movie ….. There are plenty of ways.

I think the worst thing for me is to sit around and dwell on how I’m feeling. It amplifies it.

Today I had a good health day. I was fortunate enough to encounter someone I knew from the shelter who needed help. I spent some time with him, listening. It helped me probably as much as it helped him. In this world we only have each other.

At night, I was home – home … what a beautiful word – with a heightened awareness. I was more aware of (and more grateful for) my son and I chasing the ice cream truck. I was more aware of the balmy evening walk we embarked on – and so grateful for it. I was more aware of cooking corn on the cob for me and my son, a nice taste of summer and food in our bellies. I could stand there in front of that boiling water and endure it … happily. I was more aware and more present when I read my son a book. I had the concentration tonight. I had the mental alertness. I was present. I was involved. I was grounded. That’s luck.

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Doctor, Doctor, Give Me the News….

I fired a doctor who said I was depressed. I found another doctor who wanted to give me Ativan for my symptoms; he didn’t come


and tell me it was “in my head.” But I know Ativan is an anxiety med. He didn’t say that it’s used for other things or anything. Just that it would help.

I also told this quack that I’m a recovering alcoholic and that taking something from the Benzo family would be …. less than desirable. Especially since I had a love affair with Valium when I was 14. He chuckled and looked at me like, “Isn’t she cute?”

He said they use it in detoxes for alcoholics all the time (here I was sober for several years already … 4 maybe?). I took the piece of paper, the prescription, to shut him up. I threw it in my glove compartment and threw it out when I got home.

Now what?!

I switched doctors again. My mom was lamenting for months that I didn’t have a smart doctor like hers. So? I switched to hers.

I have difficulty stating how badly I feel, so mom came with me and did the talking. At this time, my heart was flipping out. I woke up at night not breathing –


was scary. My knees were becoming arthritic and I was scared to cross the street because it would take me so long.

I had a heart to heart talk with close family members about what would happen to my son …. what would happen IF ….

Yeah. I thought I was going to die. The heart stuff was nothing I’d ever experienced (I was an anorexic when I was younger so heart palpitations aren’t foreign to me. This was something else entirely.). The breathing terrified me. What if I didn’t wake up when it happened? I’d sit up, gasping for air with my heart rattling in the darkness.

Finally I saw Dr. C. She was sympathetic and seemed to genuinely believe me. This was new. She felt my knees and agreed they were swollen. I don’t remember what she gave me, but she gave me something and asked me to return in a week.

And there were scads of blood tests: Rheumatoid Arthritis, Lupus, Vitamin Deficiencies ….. Lyme Disease. I sat there with the needle in my arm as the lady switched vial after vial after vial. I asked her if they were conspiring to sell them on the black market.

I tried to keep doing things with my son and it was April 2008. I took him for a walk in the woods. Bundled up in layers, we took a walk on a dirt path with a large wake between us and the trees. I trudged along, my knees screaming in pain. I kept my hands in my pockets because the weight of my arms felt such a burden to my shoulders; it was like carrying 50 lb weights all day with no relief. The sun was warm, a benign breeze filtering fresh air over us. In the shade were residual snow piles.

The next morning, my butt was itchy. ITCHY. My fingertips wandered under the elastic waist of my pajamas and scratched furiously. There was a bump. A big, scabby bump. I had my mom look at it.

“It’s a spider bite,” she informed me. With tweezers in hand, she picked at it. “See? The spider’s still here. He’s small….”

She presented the insectile carcass to me, and I saw a tick. A deer tick. We stashed it in a Ziploc and headed back to the doctor.

She chose to treat me for lyme disease after hearing that I walked in the woods ALL the time. Dr. C. didn’t think this particular tick was to be incriminated in what’s happening to me, obviously. My symptoms predated this nasty little guy by who knows how long. She declined to test him. It was obviously irrelevant. But she had questions.

My answers:
No, there was no other tick that I recalled. No, there was no bull’s eye rash. No, there was no rash at all. No, I don’t recall any initial flu symptoms. No, I don’t remember when this started – but the worst of it seemed to be last summer.

And so I was on Doxycycline. Three weeks, twice a day.

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Still Adjusting After 5+ Years

Why begin at the beginning?  Besides, the beginning is a bit skewed.  Even I don’t know when the beginning is.  I first saw the specialist 3 years ago.  Dr. H. thought I had been infected for 2-3 years at that point. 

For today I’ll begin with where we are today.  I’ll get to the beginning in the next one.  Today I’m off antibiotics.  I lost count of the months I spent on them after 18.  Of course it wasn’t all at once.  It was 3 weeks here, a month there, 3 months here, 6 months there ….

Right now I’m on Zoloft (an antidepressant) for the muscle fatigue and exhaustion.  I’m also on Low Dose Naltrexone to supress the autoimmune dysfunction I’ve been experiencing. 

My knees told me it was going to rain the other day.  I don’t feel like much of a hottie when I’m waddling stiffly around and crawling upstairs, but that’s okay.  I’m trying to get used to being a 39 year old with a sometimes 80-year old gait.

I started to cry yesterday. My voice rose into a childish wail when I was telling my boyfriend I didn’t get sober to be the kind of mom who passes out on the couch. (I have been sober since 1/2/03).

But I forgot. I forgot that I have help. I forgot that my child is not alone. I forgot that his needs are met – food, clothing, bathing, tucked-into-bed and kissed ….. even if I can’t chase him around outside or play boardgames ad nauseum. Besides, he has THOSE needs met by his grandparents and aunts and my boyfriend and friends. Hell, I have a whole army of people at my disposal.

I also forgot how BAD it used to be. I forgot that there was a lonnnng stretch where I wasn’t treated for this. I forgot they thought I had MS, then lupus, then Rheumatoid Arthritis, then fibromyalgia, then chronic fatigue, then depression (had to fire that doctor who got stuck on this one ), then some type of anemia that has to do with a vitamin B deficiency …. oh, they had lots of theories and none panned out. I can’t even remember them all.

I forgot that there was a time when I genuinely thought I might die. I genuinely thought I might have to go on disability. I genuinely thought someone might be one day wiping my ass and pushing my wheelchair for me.

I forgot to be grateful that I can crawl upstairs. I forgot that one day I left my cell phone upstairs when I was leaving for work and how I stood at the bottom of the stairs and sobbed because I wanted to conserve energy and going upstairs might compromise my ability to do something else later. I forgot I was afraid to cross the street because it took me so damn long. I forgot I suffered from nerve pain …. the stabbing-hot-electrical jolts made me nearly faint; if it wasn’t a stabbing and intermittent pain, I surely would have.

If my attitude is okay, then I’m okay.

My downfall is my remembering who I was before this happened: a strong, healthy, athletic lady who liked to hike in the woods. Oh, those hikes in the woods. That’s where this all began.

I also forgot to be grateful that it wasn’t my son who contracted this. He might have been 2 when I was infected that fateful day … whenever it was. I myself can’t articulate what it feels like sometimes; how the hell would he have made his symptoms known?

Yes. There’s a lot to be grateful for. And as miserable as it is sometimes, it’s always getting better. There were months and months and months where it just kept getting worse. And just when I thought the pain and the fatigue couldn’t


be worse, that I had hit the lowest bottom possible, it would always become worse.

Today there are more good days than bad. There was a stretch where I only felt something like normal twice in one summer.

I have to stay on top of this attitude of mine. It makes all the difference.

I think what another problem has been has been my clinging to and internalizing everything my specialist says. She maintains that if it’s treated aggressively enough then it can be overcome. Period. So any glimpse of normalcy flooded me with elated feelings of “this is IT.” And then there would be a setback. And I’d be devastated. There was even a 7-month period where I didn’t see her. She officially graduated me. And now I’m back.

My primary doctor told me that it’s possible I’m free of the bacteria, but that there’s permanent damage and the symptoms will have to be addressed as they present themselves. That’s had me down, too.

On the other hand? I had a whopping dose of antibiotics for Strep Throat this winter. While I was on them, my symptoms came back. My primary is puzzled by this, wondering if I still have live bacteria. When they die, they release toxins that aggravate lyme symptoms. On the other hand, she’s worried about drug-resistant bacteria, superbugs, the toll the antibiotics take on the body ….

My specialist is treating me for “Post Lyme Syndrome.” There is another buzzword that I feel even less affection for: “Chronic Lyme Disease.” Chronic. I hate that word. And no medical authority has really used it on me yet, just dangled it under my nose now and then.

I have to keep it all in the day. Another part of my problem is looking back too much, looking back and counting the months and years that that fateful walk in the woods has stolen from me. Another problem is looking forward too much, squinting ahead at a light at the end of the tunnel that may not even exist; maybe that light is an optical illusion caused by my squinting. I look ahead and wonder if this will be resolved in the next month, the next year, the next decade.

I have to keep my feet on the ground right where they are (insert date): ____________. I can’t keep living all the past days I’ve lived with this and I can’t keep living through future events that may not even come to fruition. I can’t keep worrying about events that may never happen or get too attached to a resolution that may never come (and disguise that attachment as “optimism”). An open mind is all I need.

Keeping an open mind, keeping gratitude, and keeping my wits about me. These are the things I have to remember to do.

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