Lyme Link

Or at least I feel like there is! The second I say I have Lyme, I am offered doctor referrals for someone who wasn’t getting better and saw a Lyme Literate Doctor -  always 2nd or 3rd hand, so I can’t get the whole scoop. I don’t know. Do they really know better than the CDC? I know I’ve read that many of the treatments given are actually dangerous or have been proven not to be effective and I’ve heard, even from referrers, that the doctors charge big bucks.

I have a lot of joint pain and some short term memory problems (usually at the same time I’m having the pain, so I think it is just that it hurts too much to remember stuff…) but I don’t think it is worth dying over with risky treatments.

Have you been to a doctor specializing in Lyme? Did it work for you or was it a bad decision?

Battered butterfly

Originally uploaded by StampingMad

I went out to the garden today and saw this butterfly. Battered, missing a half a wing, but still beautiful and very determined to get nectar from every flower blossom it could. Anyway, just thought it was a very inspirational sight. I’ve got some pains, but this little guy is actually missing parts!

I was feeling pretty good - just mild pain - and went out for a bit yesterday. From the pain I’m in today, you’d think I was doing hard labor in a field for eight hours. Not hardly. I spent three hours sitting at a table doing a bit of rubberstamping and listening to technique discussions. Three hours mostly just sitting there and today I hurt about an 11 on a scale of 1-10. Six weeks of medication and my joints are still really affected by the Lyme disease. Any activity gives me a major pain relapse. Has anyone else had this stuff happen?

If you work full time and have a bad case of Lyme disease, you have a few options - sick leave, short term disability and long term disability. Of course, you’ll have to use up all of that sick leave you’ve saved up before moving on to the next step. However, you get at least part of your income if you choose any of these options. For people who work part time, the options aren’t as nice - quit your job or take unpaid leave under the family medical leave act.

What do you do to make ends meet now? Well, there aren’t really many options. I’m fortunate enough to be able to freelance when I can’t work out of the house, but I still had to turn down quite a few freelancing jobs when my brain wasn’t functioning at peak performance. If you are looking at a month or two of unpaid leave, try:

• Cleaning out your closets. Resale shops and eBay have saved more than one person from living in the dark during lean times.
• Taking on low stress odd jobs at home. Sometimes, you can’t get off the sofa long enough to work four to eight hours a day on your feet, but you can hem pants or edit a paper.
• Discussing work from home options with your boss. If you have a job that could actually be done at least part-time from home,  it is a win-win situation. You can rest part of the day and still be paid a partial salary and your boss isn’t buried in a pile of extra work.

If you have any hints on dealing with job issues while you have Lyme disease, I’d love to hear them.

The worst thing about Lyme disease for me is the joint pain. I don’t like taking medication, so I asked for something much weaker than the Percocet that was initially recommended. I’m taking what amounts to an extra strength Aleve and it pretty much does the job. However, I’ve had tears in my eyes after it wore off more than once during “strenuous” activities  like sitting at a table for four hours. I’m thinking about investing in one of those massage chairs you see at the mall or moving into a family member’s hot tub as additional pain management techniques.

Anyone have some good tips for dealing with joint pain?

When people find out I have Lyme Disease, I get some interesting reactions. The most common is fear that I will give them the disease somehow. They all but form the sign of a cross if I ask if they want a sip of my drink. So, to put fears at rest: 

If one family member develops Lyme disease, others are not at risk unless also bitten. Human-to-human transmission has not been noted. Although dogs and cats can get Lyme disease, there is no evidence that they spread directly to their owners. However, pets can bring infected ticks into your home or yard. Consider protecting your pet through the use of tick control products for animals.

I am lucky enough to have a doctor that sits and actually chats during the visit, so I never feel funny about asking questions. However, even if your doctor is in a hurry, don’t feel uncomfortable asking questions. Make sure you ask things like:

• Exactly what symptoms should I be looking for?
• How long should I take the medication before I come back for a follow up?
• Can I take something for joint pain along with this?
• Is there anything special I should be doing?

There are no stupid questions when it comes to your health!

I know my brain. It whips out four blog entries and responds to ten emails before 9 a.m. and multi-tasks the entire time. I chat with the kids, answer the phone and make a to do list for that day’s work tasks while I’m typing away. So, I knew right away that Lyme Disease was affecting my ability to think clearly and work effectively. Suddenly, a few morning tasks were taking half the day. And don’t even ask about freelance writing. It is a huge effort to get one 400 word article written in 2 hours when it used to take about a half hour. (These are how to articles and I’ve already completed the project I’m writing about the day before.) Then, I have to read through and edit the article twice to find all the sentences I started and left hanging, etc.

So, despite the fact that family members claimed there was no difference, I knew Lyme Disease was affecting my ability to think clearly and process things quickly. Sure enough, the Lyme Disease Research Center says:

Lyme disease may affect the brain in many ways, the most common of which is a disturbance in thinking (cognition).

Oh, joy. I’m making lists out the wazoo and that helps a lot, except sometimes I forget what I was going to write down before I get it written. It seems a bit better this week, though. I actually got two how to articles done today.

I am so burned. I thought I stayed in the shade pretty well when I went and hobbled through the John Smith 400 celebration Saturday, but I so didn’t. If the antibiotic you are taking says it causes light sensitivity, that is code for “If the sun’s rays even think about touching your skin, you will fry like an egg on asphalt.” If you have to go out, slather on sun screen, wear long sleeves and wear a hat. The area I was in had no grasses or trees, so I wasn’t worrying about wearing long sleeves to avoid ticks and I was ducking from tent to tent and didn’t worry about sun screen. Anyway, hopefully my experience will help someone else avoid turing tomato red.