Bloody Lymey

A Blog About Living with Lyme Disease

I’d Rather Show Smiles than Sjogren’s

Of course today was my doctor’s appointment and I was FINE. A topic came up: Sjogren’s Syndrome (Pronounced: “Show-grins”).

“Why?” You ask?

Well. I mentioned my sweating – or lack thereof. I haven’t mentioned it before because …. it’s natural to go to doctors with COMPLAINTS. Feeling confident, confident, dry and secure on a hot and muggy August day when my friends have damp curly hair and wet underarms isn’t such a bad thing. Is it? But …. I brought it up. She asked me some other questions. Yes, the heat does bother me sometimes – even sans sweat. Headache? Why yes! For two days with neck pain. Dryness? Well….. I’ve been a thirsty person since I was born. That’s my baseline. I wake up sometimes with dry eyes – like anyone! – and blink a few times and it passes. But my eyes …. pressure and sometimes blurry. [I told her during my last visit when my complaints were neurological]. Neurological. That sounds more like Sjogren’s than RA – and she’s going to test me for that, too, since my last test was four years ago.

I read about it and a website mentioned the metallic taste. Hmmmmmm. I’ve rassled with this one for years. Sometimes my coffee tastes horrible. Sometimes I’m bitterly disappointed in Dunkin’ Donuts. And my coffee maker at home. And Starbucks. How can they ALL suck? Well. It’s not them. It’s me.

Reading more about it, it might explain better the horrible progression of my teeth. Two dainty lil’ cavities and my teeth are rising far above my gum line and the dentist has used the term “bone recession” with regard to my jaw. He said it doesn’t flush with the condition of my teeth. The lady who did the “deep cleaning” told me to expect it to take a long time. It didn’t. She was amazed by how “clean” they were below the gum line, adding it didn’t match my x-rays. Two puzzled dentists. Two.

So the plan: I’ll be tested for a rash of things – but not a rash itself – in the next fiscal year (starting July 1st) so I’ll pay one deductible for alllllll these services. Why pay one thou’ when I can shell out a mere $500? A mere $500. Har har har. Yeah, I’m miss money bags [not at all]. But it sounds better than $1,000. No commas. No commas are GOOD.

And I’m going to be referred to a Rheumatologist. And that sounds good to me, just to have a second opinion (and my brilliant and aggressive Dr. C. used that term).

I’m glad I felt good. I don’t think this doctor has seen my everyday non-sick self like …. EVER. I could also articulate my symptoms better than I might have last week when I had that massive brain fog.

So, I’m back to wondering what’s going on.

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Lyme Support Group Berkshire County, Western Massachusetts

Here’s the newsletter I got –

I haven’t been to any of their meetings yet, but they have been going on for some time now. They must be pretty good! I hope to get out to one soon. It’s fairly accessible to Eastern New York and Southern Vermont. It may be a stretch, but Northern Connecticut, too. Lyme Disease is a pretty lonely illness – there’s support if you need it. I know there are other groups out near Springfield, MA as well – Longmeadow area. Here’s info on the Berkshires one:

The monthly Lyme Disease support group hosted by the Lyme Alliance of the Berkshires is set to meet this month and has also scheduled meetings for March and April.

Adams Free Library
92 Park Street
Adams, MA 01220

6 to 7:30 pm

Next Meeting: Tuesday, February 28th, 2012

Upcoming Meetings: March 15th, 2012 & April 19th, 2012

I look forward to seeing you there.



She Wore an Itsy Bitsy Teensy Weensy …. Tick.

They can be VERRRRRY small:

If you’re a hairy guy – what do you think the odds are that you will feel this tiny little varmint burrowing into your skin? To anyone – do you think this tiny guy cannot burrow into your socks that your pant legs are tucked into? Have you ever seen socks under a microscope? They’re pretty holey! These little buggers are simply insidious.

Remember to stay in the middle of trails. Check yourself CAREFULLY after a walk in the woods. Take a shower if you can. Have your outdoor pets wear flea & tick collars to reduce the odds they will have this teensy little hitchhiker.

Statistics say that 50% or more of people stricken with Lyme disease do NOT remember a tick and have not seen the telling bull’s eye rash. It does not always appear and when it does, it might be on the back or somewhere the person cannot see.

Please remember how small ticks are. If there was one thing that might have helped me avoid infection, it would have been my own complacency and the whole “it won’t happen to me” mindset.

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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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They Shoot People Without Rashes, Don’t They?

The more I talked to people, the more I heard the same thing: “I didn’t get diagnosed because I never had the bull’s eye rash.”

Rewind several years:
Now ask me what my concept of lyme disease is, and this would be my longwinded answer—

“It’s a rare disease contracted by ticks [and here I don’t discern between dog ticks or deer ticks]. You feel a tick embedded in you and someone helps dig it out with tweezers [isn’t that cute? I thought you always feel them or see them!]. After this, you get a bull’s eye rash if you have lyme. You get flu symptoms. Doctor gives you meds. After a month, you’re okay. It sucks, but …. ”

And so that explains my complacency in the woods. I trudged through bushes. I waded through tall grass. Laying in a meadow was no big whoop. I had not a care in the world. The RASH would tip me off. The RASH!!!

Unfortunately, this is the problem with the medical community as well. No rash? No diagnosis. If the glove don’t fit, you must acquit.

The more I talk to people, the more I hear this same story. Mystery symptoms with no treatment. Everyone has a story. EVERYONE. Even if it’s a friend’s husband’s fifth cousin once removed. I can’t get over how many people have been touched by this illness – even if indirectly.

I found out (the hard way) that a deer tick in its nymphancy (I made that word up) can be as small as the period at the end of this sentence.

Now take some hairy guy, put him in the woods, and YOU tell ME how he’s going to find this thing sucking on him?

After a stroll in the woods (or after gardening or being in your yard), you might have an itch on the back of your neck. You scratch it. You feel a fleeting little speck of something and dismiss it as dirt. And you think nothing of it. You’re not going to be so hyperaware of this that you’ll think to tell this to the doctor months or years later when you’re exhausted.

I knew an older man, very overweight. He had arthritis and used a cane. It would take infinite eternities for him to cross a room. One day? I hadn’t seen him in a while. He walked in and just … walked across the room. Effortlessly. He always accepted his fate with the arthritic knees because he was older and overweight. It turned out to be lyme. He gushed that he hadn’t felt this good in 5 years or so.

THAT is the cunning thing. It settles in so slowly. You don’t even notice it. You rationalize the symptoms. You’re getting a little older or you’re working a bit more or you have kids or …. something. And when the doctors tell you this, you find yourself nodding and agreeing. Sometimes.

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Lyme Zest …

Spring 2009-January 2010

Following my graduation from the specialist, recovery was long and slow. I had been on antibiotics off and on for countless months. I think it was closing in on a year, counting the meds my primary had me on.

This time, however, was spent rebuilding myself. Prior to being sick, I was slim and trim and quite athletic. Now? I was flabby, untoned and totally sans stamina. I heard that lyme disease makes the muscle tissue naturally degenerate and then being rather sedentary for a couple of years compounded this.

My bedroom was on the second floor and the laundry machinery was in the basement. A trip down two flights of stairs and a trip up one was cause to lay down for 20 minutes.

I attempted to start walking. I’d walk maybe ten minutes from the house and would get scared I couldn’t make it home again.

After a few months of doing just a few more steps each day, I found myself wandering aimlessly about the neighborhood without any concern about how far I’d gone – except maybe that my son was going to be dropped off shortly and I had a time-sensitive matter.

I took to hiking again. (Am I crazy?! I hope not. I guess I look at it like this: I was in the woods countless times and was infected once. Now that I know more, I know to stick to the trails and not go traipsing through the woods and to wear longer clothing and inspect myself after …. the area I live in is quite wooded anyway so it’s probably hard to avoid).

I climbed a small mountain. I remember nearing the top and my legs were trembling from overexertion. I could see the rocks and the hawks beyond. I goaded myself to keep going. I hadn’t come this far to walk back down to the freaking parking lot! I made it to the top and sat for the longest time, looking down at treetops and hawks and lakes. My lip trembled. I cried. I never thought I’d be on this mountain top ever again.

My clothes started to fit better. I could wear the smaller sizes that I couldn’t bring myself to donate.

I thought I felt perfect. But there was something …. dull….? …. about the way I felt. I had a cigarette. It was the first one I had in a year and some months. I barfed after, but somehow I felt “put together” again.

After my graduation from the specialist, I had low blood pressure. Mine was low by nature, but this was epic. I never fainted or had dizzy spells. But the cigarettes elevated my blood pressure. I felt more alive. It was supposed to be temporary …. but after a couple of months, I was back to my former pack-a-day habit.

An isolated day in November brought me an unusual gift. You know those days when you’re bursting with energy? You can hardly contain yourself? Everyone has them now and then. I had my first in a few years. I couldn’t believe it. I cleaned and played with my son and dashed around. I could hardly contain myself.

Months passed. Ten to be exact. I talked about lyme in the past tense. I didn’t remember it as vividly. I was back to taking my health for granted.

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Spring 2009:

Gradually, I felt more and more like my old self. I was elated. I can’t even describe it. Not only was my body healing, but my spirituality had deepened.

It might sound corny, but I believed God had a Plan for me and that lyme disease was a part of it. This faith ebbed and flowed throughout the sickness, but now that my body was feeling better and my thoughts were gaining a new clarity, it was easier to see.

God pounded some sense into me – along with AA and my sponsor. Here’s a short list that could go on forever of what I learned:

1. Assertiveness – it was always far beyond my comfort level to get pushy with doctors. I had to. I had to. I like to think they know more than me. I feel like it’s out of my league to try and push them to do more when they’re reluctant. Who do I think I am? I learned that I know what I’m feeling from the inside out. They do NOT.

2. Empathy – I never had much empathy for people with physical issues. I thought I did. I was very sorry when they complained. What I didn’t realize was that I was sorry they were pissmoaning to me about their problems and I wasn’t sorry that they weren’t feeling well. Now that I had something to identify with, I am far more interested in other people’s ordeals. I also found ways to stay off the pity pot by getting out of myself more and asking people how THEY are doing. This, too, cultivated empathy and a deeper interest in my fellow man.

3. Getting off the pity pot – See above. Or see the other entry I have in this blog titled “Being a Real MOTHER on Mother’s Day.”

4. Faith – In AA step three reads: “Made a decision to turn our will and our lives over to the care of God as we understood Him.” This is the essence of faith, unconditional faith. This step, when done perfectly, is done unconditionally. Sure, we alcoholics usually have conditions. We’ll turn our will and our lives over to God, but not … our kids. Not … our careers. Not …. our finances. For me? I wrestled with surrendering my health to God. This being sick business beat some sense into me.

I have a refrigerator magnet that says “Faith is belief that when there is no solid ground to stand on, that I’ll be taught to fly.” I was taught to fly.

5. Adapting – I had to learn to live like this. There was so much involved in this. SO much.

6. Living Life One Day at a Time – Yes. YES. Perhaps you’re moaning. Another AA cliche. I used to roll my eyes at them, too. But this was life or death for me when I quit drinking. Now it was a life skill I needed to get through a tough time. I did FINE with being practically crippled if it was just for 24 hours. When I started looking over my shoulder and seeing that months and years amassed, I’d be a wreck. If I looked too far ahead to a salvation that may never come or a permanence to this condition, I’d be anxious or bitter … or something. Going through life’s up’s and down’s just for 24 hours is so much easier.

7. Asking for Help – My pride always forbade this. Lyme disease made it necessary. I learned that to ask for help is not a weakness, but a strength!

8. Honesty – I had to be honest with others about how I was feeling – mostly in AA. Telling people I was “fine” and smiling wasn’t doing me a great service. It also prevented me from really bonding with other people. It prevented me from receiving other people’s care and love. I didn’t get into the whole nuts and bolts, the pain and the fatigue. But I had a safe forum to talk about the feelings about it – the fear, the despair, the anger, the sadness …. Again. This made a transformation from being a weakness to a strength.

9. I’m Not Handicapped! – I had to learn that with these disabilities I had/have/had/have had, it was no excuse to just lay down and let it happen. I had to work harder to do some things than other people. I had to take more time doing things than other people. I had to keep plugging along.

10. I’m not a Victim – This isn’t bad luck. It’s not misfortune. God isn’t out to get me. Why me? Well? Why NOT me? Why should this happen to someone else? It is what it is. This took vigilance on my part.

In April 2009, I was promoted to a case manager at work, but I was transferred to the individual’s shelter. I loved it. It’s a tough crowd, but it’s a crowd that I care about (and I still work there). There was more money. It was full time. There were benefits. It was more like a career than a job. Things were gelling.

In April 2009, I saw the specialist. She liked what she saw. She graduated me.

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Light at the End of the Tunnel

I told my boss I was looking for a new job because it was too cold at work. It wasn’t just me. I actually brought in a thermometer to show them it was frigid (it was in the 50’s), but I lacked my ordinary emotional fortitude on top of my physical problems to go through with more than checking the temperature back there.

So I told my boss I was looking for a new job. Unfortunately, I didn’t have a job and no real prospect of a job. The boss asked how long I planned to stay and I blurted out that I hoped to be out in two months. Unfortunately, she held me to this. Unfortunately, I didn’t have another job yet.

An animated corpse. That is what I felt like. That animated corpse was kind of relieved to be nearly unemployed and now the coldness felt more bearable. There was an end in sight.

At an AA meeting, I made an offhand comment about being nearly unemployed. And scared. Afterward, an AA acquaintance said he knew of a place hiring entry level with room for growth. It was at the homeless shelters in town. I bit.

I applied in mid October. I called in late October. I called in early November. I sent an email in mid November. Finally … the call.

This friend from AA came with me to my interview and I got the job. I started the third day of December 2008. Three days per week. This job didn’t have the freedom the other job had, so if I had to do stairs? I had to do stairs. Gimpy or not!

Also, there was no solitude like that the other job afforded me. In fact, homeless people could be emotionally draining – you’d never guess it, would you? But I got a job at the family shelter and I liked the little kids (AND the parents). Sometimes I was paid to sit and hold a baby while the mom did job searches on the computer. I loved it.

The money was low, compounded by the part time hours. But I lived with my mom. I had to. So I could use it for food and gas…….

I had two days to rest while my son was in school. This balanced things out considerably. I was gaining mobility. I was feeling like “this is it.”

By day’s end, I was exceptionally tired. However, it felt more like a normal kind of tired. Maybe this WAS “it.”

I saw the specialist again later in the month (December). She suggested I continue with the Ceftin. I did. I continued the vitamins, too. BOY was my pee ever yellow …. neon! But the color in my face was pinkening.

I could see the light wafting in through the darkness. And my eyes were adjusting to it.

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Antibiotics with a Twist of Lyme

The antibiotics made me incredibly bloated and incredibly constipated. The literature promised me diarrhea – which by contrast sounded like bliss. However, had I had diarrhea then constipation would sound like bliss. The grass is always greener. The manure is always browner. Why am I telling you this?

So … my symptoms did get worse, just like the doctors promised. My knees got it the worst and the jolts from the nerve pain were now bodily moving me.

I still felt horribly cold (thyroid symptom). A balmy Indian Summer came our way that autumn, and I was bundled up in hoodies. Compounding matters was that my boss had an affinity for wearing heavy sweaters and keeping the AC cranked up at work (this led me to quitting there after 6 years+). I almost couldn’t function. Looking back, I honestly don’t know what possessed me to keep working.

As I write this, I guess the answer is a refusal to surrender. I tried to keep moving. I tried to do as much as I could on a daily basis – and honestly, I overdid it quite a bit. I overdid it in doing so little. Cooking dinner for my son was a crowning achievement. Crawling up the stairs was a triumph. Getting out of my car in less than four minutes felt like setting a Guinness Book Record. My priority was to keep working.

I had nightmares of going on disability: collecting a check for like $800 if I was lucky, getting subsidized housing (was that what I wanted for my son? Cheap housing in a bad neighborhood?!), collecting food stamps, getting Medicaid …. the notion of other people taking care of me and my son made me sick.

So I kept on trudging through the fall of 2008, bloated and constipated and cautiously optimistic. The specialist said that if it’s treated aggressively, it will go away. She said that the concept of it being a permanent condition is a fallacy. I believed her. I had to.

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Ticked Off

In late August of 2008, I saw the specialist. She explained my lab work to me and ordered sexier tests in the city.

My thryoid readings were good. Except the antibodies test. My PCP wheeled herself over next to me to show me her laptop: normal is like 1-7. Mine said: “>1,000.” She explained that the test only goes up to 1,000.

The specialist reiterated this and offered a more in depth explanation: one of the hormones that the thyroid needs is shaped identically to the bacteria that causes lyme; my immune system is fighting everything shaped like that. This is why I’m cold. And this is why my teeth may fall out. For many many countless months I wasn’t metabolizing calcium and other essential vitamins and minerals. I had calcium in my diet, but my body wasn’t absorbing it. Hence the halitosis. Hence the bone recession. Hence my being “long in the tooth.”

The sexier tests came back and the results came in the mail. I had lyme. Did I EVER. The other tests were geared toward people with very new infections. I had mine too long.

She increased my dose of Ceftin. I was now at 1,000 mg/day. She discussed some mail-order vitamins. I agreed. At this point I actually wore an amber necklace to try and get my thyroid back on track. Yes, it does sound ridiculous. I’d have bought snake oil if someone promised any results. ANY results.

At this point, I had quit smoking 9 months prior. I hadn’t had a drink in over 5 years. My heart, liver and lungs were fine.

Damn those hikes in the woods.

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