Friday, December 18, 2009

Working in Bed

Perhaps knitting is the 4th oldest profession? At any rate, it's nice to have a job that I can do while I'm laid up with this - well - whatever it is.

Lupus - test negative
Mono - test negative
Lyme - test very slight positive*
H1N1 - test negative

I swear, I've had everything but a pregnancy test. Now I'm waiting for my Christmas Eve appt with a Rheumatologists (my first ever) and may just get a handle on what ails me. I love the whole Tiny Tim pathos, I hope it's snowing when I go, and that there are carrollers. I may carry Gerry in on my shoulder...

Here I am, for the 4th week in a row, with my swollen glands so painful I can barely swallow (tonsils out at age 13, it's not that) and my joints aching and creaky. I'm either feverish, or chilled, or my skin hurts.

Yesterday I stayed in bed all day, didn't leave once except to go downstairs and say 'Hi!' to the family. I missed Max's band concert (they're doing it again on Tuesday) and - perhaps because of the rest - the onset of my evening's fever was delayed until 7:00 from it's usual 5:00 arrival.

A very good friend took the kids out last night to do their holiday shopping, it was SO lovely of her, and when she brought them home we were able to do a bit of sitting and knitting for a half hour or so. I hadn't realized how much I missed in person contact - well, someone besides Gerry and the kids - and it was a lovely evening. And my fever had passed by then - yay!

Today I'm taking the day off of getting my online classes together to work on a scarf for Hannah for Christmas. I want to finish this up and try to get something made up for Max and Gerry, too.

But first, to sleep a bit...
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21 Comments:

Blogger Lyndsey-Jane said...

Have they considered chronic Fatigue Syndrome, as what you experiencing is very close to when I was first diagnosed after getting Epstein Barr Virus. Hope you feel better soon and get a diagnosis sorted.

December 18, 2009 12:23 PM  
Anonymous Anonymous said...

Have they done a TB test or x-ray?

December 18, 2009 12:57 PM  
Blogger NancyFancyPants said...

All it takes is a very slight positive on Lymes to produce awful results, and it is often misdiagnosed. Make sure they're not dismissing this one out of hand. One of my friends was mis-diagnosed with rhuematoid arthritis when it was really Lymes.

December 18, 2009 1:02 PM  
Blogger Penny said...

I agree. That sounds much like my Fibromyalgia test results... I cut out the gluten and try for natural whole soy and feel much better than I did six years ago... (note: my captcha word is: active)

December 18, 2009 1:04 PM  
Anonymous Linda S said...

I hope you're feeling a whole lot better soon!

December 18, 2009 2:36 PM  
Blogger grammilou said...

Oh Annie, I hope you feel better SOON!! This has been going on long enough. Thank heaven for good friends to help out. My thoughts and prayers are with you.

December 18, 2009 6:25 PM  
Blogger Sarah said...

I am so sorry you are feeling unwell. I hope you feel better soon.

Sarah

December 18, 2009 8:29 PM  
Anonymous anna McCarthy said...

My dear, you have Lyme disease plus some other co- infections-sounds like Babesia. A 9.5 on the Elisa is very high on that most useless of tests. The cut off is somthing like 1.3. Read Melissa Knits for July of this year for a thorough explanation or Lyme MD blog. Regular doctors are totally ignorant about Lyme disease due to CDC conflicts of interests. Watch Under Our Skin if you can find it. Netfliks? Don't know about doctors in your area who know about Lyme but it was a huge tick year due to so much rain. The worst ticks are the teeny ones which you will not notice on your nice pinko blonde skin. Stick ot your guns and be disagreeable if you need to.

December 18, 2009 10:16 PM  
Anonymous Anonymous said...

Have the Rheumy check for PMR (Polymyalgia Rheumatica).

December 18, 2009 11:50 PM  
Blogger Winnie M said...

It sucks to have an undiagnosed illness. And so yet another sugestion - a friend recently went through hell when she was misdiagnosed with rhuematoid arthritis and/or depression. The meds didn't work at all. Finally a brilliant doctor sent her to the sleep clinic and lo and behold she had apnea (sp?) She was startling awake up to 15 times per minute. It was so slight that she didn't remember being awake at all and her husband didn't notice anything. She now has a machine she wears at night and her husband says after the first night, when she slept 14 hours, she was like a different person. Her physical symptoms have cleared up and she once again feels 35 instead of 105.

December 19, 2009 2:42 PM  
Anonymous Paula said...

Geez Annie ... a month is a long time to feel horrible ... does Mayo have specialists in Lyme and/or any other ailment that is a possibility ? Good thoughts and positivity being sent your way

December 19, 2009 4:04 PM  
Blogger Susan said...

We have searched for answers for my daughter for years. We finally found a wonderful naturopath in Maine who helped us sort things out. In her case, it was Lyme that exacerbated underlying issues of celiac and thyroid.

Please contact me offline if you want to discuss things further.

You are in my prayers.

December 19, 2009 5:06 PM  
Anonymous Gayle said...

Check the symptoms of fibromyalgia it has many of the same symptoms of arthritis, Lupus, and usually comes with Chronic Fatigue. It's an exclusionary thing, they can't test for it, they just eliminate everything else but usually if the trigger points hurt that's what it is.

Hope they figure out what it is so you can have a shot at feeling better.

December 19, 2009 9:00 PM  
Blogger Susan said...

@Gayle,

In my experience, fibromyalgia is the diagnosis they lump people into when they don't know what else to call it. When the mainstream medicine folks ran out of ideas about my daughter, that is what they told us she had. They also said they could not do anything about it so I found myself thinking, "What good is the label?"

December 19, 2009 9:13 PM  
Blogger Lisa said...

Alpha-1 Antitrypsin Deficiency. Annie, could I direct your attention to an article in the 12/20 Indianapolis Star about Nancy Irsay? As I was reading it, I thought of you. She says any doctor can perform a simple blood test...just wanted you to know.

Your friend, Lisa

December 20, 2009 6:24 AM  
Blogger knitbysue said...

You didn't mention it but I hope they ruled out Strep Throat. Several years ago I had a case of that, the test gave a false negative and I had symptoms that came and went. After they cultured the test longer it turned up positive.

December 20, 2009 8:07 AM  
Blogger pdxknitterati/MicheleLB said...

Sorry you're still under the weather! Feel better, and knit in bed some more.

December 20, 2009 10:23 AM  
Blogger Marigold said...

Hope you feel better soon! Knitting in bed may be the best possible way to take care of yourself, it would be my favorite! Have the kids take turns bringing you tea, and knit away :)

December 20, 2009 4:14 PM  
OpenID mwknitter said...

You didn't mention being tested for rheumatoid arthritis. Your symptoms arre very similar to what I had when I was first diagnosed. And the test is only about 80% accurate. I was diagnosed based on symptoms & it wasn't unitl 15 or so years later that I ever had a positive RA test. You have my sympathies - I know what it feels like. I also have fibromylagia which your symptoms also fit - in fact, the most recent theory I've heard of says that Chronic Fatigue & Fibromylagia are different manifestation of the same disease. If so, god luck - the current issue of Chicago Magazine has an article about the 345 best doctors in the Chicago area & I could not find one that specializes in either. You may have better luck with Mayo.

December 21, 2009 6:06 PM  
Blogger Debbie said...

Sorry to hear you're having such a miserable time. Hope you are soon better and it's just something frustrating like a nasty virus that just goes away. Wishing you well and good health and happiness for Christmas and 2010. Debbie xx

December 22, 2009 4:32 AM  
Anonymous Debra said...

Did you know you can have RA symptoms in your throat,jaw and most anywhere on your body? I have even had it in an eye! You can also have it without testing positive for RA. You are doing the right thing waiting to see a good Rheumy. One thing my MD found helpful is when I kept a calendar of my symptoms day by day. Take your temp at the same time each day and mark that down too.

December 22, 2009 6:50 PM  

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