Immunitas Autopilotas
Posted on 10/07/2009 11:58 am by kagranju
Lately, I’ve been working really hard. And I’ve had a lot of stiffness and soreness in my neck and upper shoulders that I had been attributing to working at my computer too much. I found myself clutching at my neck and shoulder muscles a lot lately, massaging them involuntarily and trying to get some relief from the tightness and discomfort. I’d had several great massages from Kneighbor Knox lately, but even his Mad Massage Skillz weren’t fixing this problem.
Last week, the soreness and stiffness in my neck and upper shoulders got worse and worse. And all day Friday, I felt generally more run down. (My co-worker, Shane later told me that I seemed a little “out of it” and “groggy” all day Friday, and that’s how I felt, too.)
On Friday evening, Jon noticed that I had developed some kind of terrible rash all over my back and neck and arms. It looked like I had been attacked by mosquitoes, only I didn’t feel it at all. It just looked bad. And I had also noticed earlier in the day that I had some sort of weird, sore lump on my jaw, I thought it was a stress knot in my jaw muscle (turns out it was one among many horribly swollen lymph nodes all over my body; that’s why my neck and shoulders had been so sore.). But after the rash popped up, I called my very smart neighbor, Dr. D (She’s an actual doctor. See how wonderful our neighborhood is?) and asked her what she thought the rash might be. She wasn’t overdramatic, but she suggested that stiff neck + sudden rash might equal meningitis. She strongly urged me to head to the ER.
I was not happy about this idea because it was after 9pm on a Friday night, but she explained how serious meningitis COULD be, and how a few hours of inconvenience at the ER was a small price to pay for being wrong about meningitis, and that if it did turn out to be meningitis, heading over to the ER could be lifesaving.
Sigh.
So at about 10:30 pm, my sister Betsy drove me to the ER (the older kids were at their Dad’s, and C was asleep. I was sure I would be home soon, and I didn’t want C to wake up and be confused, so we decided that Betsy would drive me to UT Medical Center while Jon would sleep at home with C.) By this time, I was feeling dizzy and weak. When I got to the ER, I couldn’t even sign my name because my arm strength was so poor.
You can probably guess the rest of the story.
Here it is, five full days later, and I am typing this from my hospital room. I’ve been hospitalized since Friday night, and since that time, I’ve had a lymph biopsy, a skin biopsy, three CAT scans, an MRI, dozens of blood tests, and I have seen an oncologist, an endocrinologist, an infectious disease specialist, a hospitalist, a neurologist, and lots and lots of amazing nurses. My ailment(s) have been quite a medical mystery, worthy of a an episode of House, M.D.. But they have finally figured out what’s wrong with me.
It’s kind of complicated, but the good news is that it isn’t lymphoma, which was definitely a leading possibility for about 36 hours. It turns out that I had some kind of viral syndrome – something that either suppressed my immune system or got a toehold in my body because my immune system was already suppressed. The virus (not contagious – not that kind of virus) triggered an autoimmune response that made my thyroid and lymphatic system go all whacked out and berserk.
Took a break from writing this to be released from the hospital, and it’s now the next day.
Basically, I had a sudden onset autoimmune “issue,” and now I’ll need to be followed by an endocrinologist and a rheumatologist to be sure that this doesn’t develop into an actual autoimmune disease. I will also have to let the oncologist keep an eye on things for a few months to make sure my lymphatic system starts acting normal again. But in general, I am fine, and I am going to be fine, and for that, I feel extremely lucky because this was all really scary. Suddenly losing the use of your arms will put the fear o’ God into a girl, let me tell you.
This was a very jarring wake-up call when it comes to taking better care of myself. I had not been eating well, sleeping enough or exercising at all. I’d been all about workworkwork, and hadn’t been making enough time to relax or do anything for the people I love, who do an awful lot for me. Which brings me to my gratitude list. I can’t begin to thank all of the people who have helped me since this happened, and who continue to help (because I am still kind of physically weak and floppy at the moment.)
I am SO GRATEFUL for the logistical help with the children, and for the flowers and food, and for the fabulous trashy magazines and the companionship and the pet care…. I am especially grateful to my dear friend Dr. D., who not only was the one who insisted that I get medical care in the first place (I would have ignored my symptoms until I collapsed), but who then acted as my advocate and health mystery detective while I was in the hospital, coordinating care with all the specialists who saw me, and helping to pull all the pieces together to figure out what the heck was wrong with me.
Because it’s where Dr. D.initially instructed me to go to the ER (and trust me, if you knew her, you would do exactly what she suggests, too!), I ended up hospitalized at the University of Tennessee Medical Center for all of this, and I want to give UTMC a definite shout-out in my gratitude list. I can’t say enough good things about the fantastic medical and nursing care I received while I was a patient there. I was on the 4th floor, and all of the nurses were great – especially Ruth, Sarah, Larisa and Caitlin. As anyone who has ever been hospitalized can tell you, nurses make all the difference, and UTMC seems to have an abundance of great, experienced nurses on that floor. Everyone at the hospital was just so good natured and bright and friendly and compassionate, and the doctors really did work overtime to try to figure out what was wrong with me. The impression Jon and I got was that the people who work at UTMC truly love their jobs, and this was reflected in the whole attitude of the place. There was an enthusiasm and an energy with the whole staff – from the specialist doctors right down to the person who cleaned the hospital room – and it really made being hospitalized a much better experience for me as the patient, and for my family.
The big kids stayed with their father while I was sick, and C stayed mostly with her Hickman grandparents (Thanks R and J). C had never spent the night away from both parents before this week, and it was stressful for all of us to be separated. Last night she couldn’t stop giving hugs to Jon and me, and to her older siblings. She was glad to have everyone back at home together.
And now? Now I think I will take a nap. Because I am still so tired that just writing this blog post completely wore me out…
10/07/2009 at 12:57 pm
my mom was diagnosed with polymyalgia rheumatica a little more than a year ago. she also had extreme achyness in her shoulders (couldn’t raise her arms by the time i convinced her to go in) and a rash. it’s an autoimmune syndrome often kicked off by a virus (she’d had a bad flu/pneumonia shortly before) and requires treatment with steroids. most of the time, it goes away after about 2 years of treatment. hers is getting better! hope your issues start to improve, too. i’ve had lupus/RA forever…
10/07/2009 at 12:59 pm
Katie, I went to school with Robert at Webb. I started reading your blog because I read Julie Anderson’s page. Anyway, I had a lot of neck pain last spring, fatigue, etc. and attributed it to stress because my husband had made five trips to Iraq that year. It turned out to be thyroid. Testing showed low thyroid and further testing showed that it was autoimmune. It has taken me about 6 monthes to get my dosage right, but I am starting to feel better. My favorite thyroid website is About.com then look up thyroid disease. There is tons of info… and the more I read the more I see that everyone’s symptoms are different. Hope this helps. Oh, another favorite book is The Thyroid Solution (Ridha Arem) who believes that many depression patients are actually low thyroid… Good Luck, Peggy Fite Collins
10/07/2009 at 1:37 pm
I hope you get better soon. Glad it was nothing life-threatening but it still sounds scary!
10/07/2009 at 1:49 pm
Thank God it’s not cancer. Whew! Best wishes for a speedy recovery.
10/07/2009 at 3:37 pm
My gut told me something was wrong because you hadn’t post in days! Glad you are getting discharged and they figured out what the issue was. Get rest (if you can) and hope you get well really soon!
10/07/2009 at 4:08 pm
What an ordeal.
Wishing you a Speedy recovery.
10/07/2009 at 5:00 pm
Thinking about you and hoping you’re on the mend very soon.
10/07/2009 at 10:36 pm
in case you are not sure what the definition of the word “REST” is:
1. refreshing ease or inactivity after exertion or labor:
just soz you know.
10/07/2009 at 11:19 pm
So sorry to hear of your latest physical problem. Get well asap ’cause everyone missed you!
10/08/2009 at 7:27 am
Soooo glad it wasn’t lymphoma!!
And now for a little “assvice”:
I’m no all natural “health nut” type and I used to LOOOOVE my diet coke with lime but I must say after I kicked the habit my health improved greatly. It’s not an easy habit to kick but all those chemicals can’t be good for your body.
I now mostly drink water with lemons floating around in it. I will have diet coke every now and then. I still find it delicious but I notice that I actually eat more and feel more tired if I have a few in a row.
Your family needs you and I wish you continued improvement in your health.
10/08/2009 at 8:42 am
Wow! I’m glad to hear you are going to be OK!
I agree completely about your decision to “wake-up” in terms of practicing a healthier lifestyle, especially in terms of work. It’s ironic that many of us work very hard to achieve the lifestyle we want, but then suffer for it with bad health. Many times it prevents us from enjoying that lifestyle we worked so hard to acquire.
10/08/2009 at 10:46 am
Very glad to hear you are on the path to mend. Love that photo of everyone snuggled: that’s exactly what my kids would do after a crisis.
Please take it slow from here, because there’s always time to build in for health.
10/08/2009 at 8:02 pm
v. v. glad you’re okay and home with your crew of beautiful kids!
10/09/2009 at 7:28 pm
A family friend recently developed a stiff neck and a rash after not feeling very well all day, and though she didn’t know it, it WAS meningitis. Just like you, she took good advice and went to the ER — where, just a few hours later, she nearly died. Had she still been at home when she collapsed, she would not have made it. Thanks to the fine ER and ICU staff at a wonderful hospital, she is home now and well again. But the lesson is, if you think maybe you need a doctor — you do. Don’t wait. I’m glad you didn’t.
10/09/2009 at 9:02 pm
I could have written this post, up to the point where you went to the ER and were hospitalized for 5 days. I did not realize that it was something that might be going around!
I went to the doctor because I didn’t like all the bumps that were all over my head (I assumed lymph nodes), and my parotid glands were inflamed. All of this seemed too close to my brain for comfort. The doctor gave me an antibiotic and did blood work, then sent me home. This was on the Saturday before Labor Day holiday. My fever went to 103, I felt like I had been beaten, I broke out in a rash, which I assumed was from Keflex, the antibiotic, even though I have taken Keflex without a problem in the past.
When I discontinued the antibiotic, I knew I still needed help but it was the holiday weekend. I thought of meningitis and the ER, but there was no headache. I’m a homeopath and a craniosacral therapist, so I called my colleague, another homeopath. I was too stupid from the illness to figure out my own case.
She worked up my case and treated me homeopathically, and I began to turn around in a couple of hours. She went through four or five different homeopathic medicines as the case changed, and I recovered over the next three days, except for dizziness which continued for nearly a week. I went to another colleague, a craniosacral therapist, who did a Raindrop Technique, which is an application of ten or so essential oils to the feet, back and head. The dizziness began to abate in about two hours, and by the next morning was gone completely.
The blood work came back the Thursday after I went to the doctor. It showed a virus of some sort, so the antibiotic would not have done any good anyway. I have been fine since, except for a bit of swelling on the right parotid that was returning last Sunday. Monday I had an appointment with my craniosacral therapist friend, and she was able to get that to resolve in about 15 minutes. Feeling great now!
10/09/2009 at 9:45 pm
MathMom turns out to be a homeopath. Katie, it’s an advertisement for homeopathic ‘cures’. Note that serious symptoms were aleviated in a few hours or just a couple, or :15!!!, by the application of tap water. It’s a Miracle, I tells ya!!! Holy Water!!!
“CranialSacral therapist”???, oh, give me strength. This is magical medicine at it’s most obvious. Such practitioners are quite dangerous.
10/09/2009 at 9:55 pm
Craniosacral. Not CranialSacral.
Sometimes there is more than one way to get to your destination. It’s not an “advertisement”, it’s just the way I got better. I hope you have great success with whatever methods you employ when you are sick. One thing is for certain, I will not mock you for your choices.
10/09/2009 at 9:59 pm
I’m glad your better and will make a full recovery, hopefully soon. I am also glad you live in a country where (a) you can still pick your doctor, (b) don’t have to go through a governmental gatekeeper who will waste five or six hours of a physician’s time before the physician gets to proceed with your care, (c) have access to all sorts of modern medical equipment and technology and the treating proferssionals aren’t afraid to use it all, and (d) as evidenced by the recent Nobel Prizes in Medicine, Chemistry and Physics awarded to Americans, still has the money for medical research thanks to big Pharma and funded (though not as much as I’d like) governmental institutes like the CDC, NIH, NCI and others. If the government takes over most of medical care, the squeeze on big pharma and the need to suck money from fundamental medical research in order to move the funds to cover routine medical care (think sore throats and scraped knees)will shut down funding for more research, leaving treatment options frozen at 2015 levels. The 800 pound gorilla on PCP in the room in the health care debate is fundamental research, and nobody of either party wants to address it. Thankfully, you have a good diagnosis, and an available, presently existing cure and thus a favorable prognosis. Get well soon.
10/10/2009 at 6:53 am
Wow! So glad to hear you are doing better. I can’t imagine how scary that must have been. Stress (working too hard, not taking care of ourselves) can cause havoc to our bodies. Please, take care and take it easy.