Lyme Link

I was talking to someone yesterday who got Lyme disease 5 years ago. She says she was full of energy and never sick in 70 years. Then, she became a Lyme victim and got arthritis and a list of other ailments one after the other. She says she’s had many relapses over the past few years.

A woman standing nearby said she must have meant to say Lyme survivor. She responded immediately that she definitely meant victim because she hasn’t overcome the Lyme disease - it still is bothering her.

I don’t like the thought of being a victim, though. Maybe Lyme fighter?

I’m personally doing pretty well this week, although I still have no stamina to speak of!

I still have pain in almost all my joints and have problems walking without hobbling around like I’m 300 years old, but now I am really having problems with joint stiffness from the Lyme disease, too. Last night, I was helping my niece with her math work. She’s learning to add and was really struggling, so I suggested that we make the two numbers and count on our fingers, which is something we take for granted, right? Well, I did the five with no problem - just held up one hand. Then I went to make a 3 with my other hand. I couldn’t. Both the last two fingers just won’t bend. I guess it is back to the doctor again.

I can’t believe I am back to all of the constant joint pain. I’m not taking any pain medications that cause water retention and I’m all puffy handed again, too. Other symptoms, such as dizziness, nausea and whatnot are back, too. The worst part is that I’m still on antibiotics. What a mess!

No matter what the CDC says, Lyme disease doesn’t always just up and vanish after a 30 day dose of antibiotics and I am living (although slightly whiney!) proof.

By the way, I was talking to someone today who was in pain from Lyme disease for quite some time and could barely function. He thinks that Lyme disease may actually leave behind a condition like fibromylagia. His doctor treated the symptoms he had like they were being caused by fibromylagia and gave him a medication for nerve pain and I must say, he looks like he feels 99% better than the last time I saw him. It was really interesting hearing him talk about this right after I read the news article on chronic Lyme disease not existing. Perhaps calling it post Lyme disease syndrome is the correct thing to do.

This new antibiotic seems to be working much better. I can add again, which is really a nice thing. I used to get 99% on my math report cards, but some strange Lyme disease side effect made me lose all ability to do math, including balancing checkbooks. I also can multi-task again, which is also very useful, especially when you are teaching.

Unfortunately, I still have swollen fingers and ankles and my joints still hurt, although some of them do not hurt quite as bad as they used to. I stopped taking pain killers because the Dr. thought they might be causing the swelling, but no change. Hopefully, I will continue to improve and the pain and swelling will go away.

I started really feeling tired and having a ton of joint pain again, so I went back to the Dr. to find out if I have some kind of permanent arthritis problem. She thinks I still have Lyme disease and decided to try another antibiotic for 90 days to see if there are better results. You’re supposed to notify your doctor if you have any of this list of side effects from the medication, one of which is bad joint pain. How to figure out that one is beyond me, unless my joints decide to start talking.

“Hello, out there. This is your hand. Just wanted to let you know that this particular pain is Lyme related.”

“Well, this is your knee and the pain you feel here is from the antibiotic. Call your Dr. right away!”

tick

Originally uploaded by John Carleton

You come back from a nature walk and you find a tick embedded in your skin. Ick. As you run for the vaseline, you hesitate. Didn’t you hear that wasn’t really the way to remove ticks? Maybe you should get a lighter instead and burn the little biter. No, wait…how do you remove ticks anyway?

Well, there really is only one way to remove a tick properly and it involves tweezers and pulling. Sorry, folks, I know it is gross, but if you don’t take it off properly, you risk infections and ticks hanging around on you for a few more days. Grasp the tick with the tweezers as close to the head as possible and pull it out. It is important to get the whole tick.

You may want to save the dead tick to show your doctor if you suspect Lyme disease. Make sure it is in a container it can’t get out of!

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.