Leslie Uncut.
22 days. That’s how long it’s been since I’ve revealed anything in my own life. That’s how long I’ve been thinking and writing this post in my head – trying, failing, and trying again to tell you what I’m going through.
I think I’m ready now.
I was born on June 18, 1983. I was perfectly healthy except for an unexplained and dreadfully slow metabolism. For the first few years, it was my mom’s problem. For the rest of my life, it was mine – my humiliating, debilitating problem.
When I was 13, I went through the Adam back-bend test with school. Eyebrows were raised so I was sent to the pediatrician, where she diagnosed me with Scoliosis and sent me home. For the next few years, my mother and I bounced from orthopedist to physical therapist, hoping for an answer to my lower back pain. Nothing worked.
I was 19 when the real pain started. It radiated from my neck, down my shoulders, into my shoulder blades, and through the small of my back. Then my joints started to ache. My parents enrolled me into a strict, life restrictive Scoliosis program in Baton Rouge. For 2 years I gave up my entire way of life and skipped vacations so I could live 24/7 in my back brace. I was put on a strict diet and exercise program with innumerable contraptions. I watched my life pass me by…with each tick of the clock, I lost a little more hope that I’d ever be normal or pain-free.
I was 21 when I decided to live. I threw all my body braces, electrical contraptions, and special pills into my closet, gave it the bird, and said, “Fuck you, I’m going to find another way.” In truth, I didn’t know if there was another way. Meanwhile, my body screamed in pain.
2 months ago I was diagnosed with Fibromyalgia, a mysterious disease whose main characteristic is chronic pain very similar to rheumatoid arthritis. All the pain I had been experiencing for 3 years had been from Fibromyalgia, not Scoliosis. I also fit the bill of other Fibromyalgia symptoms: headaches, fatigue, easy bruising, ear ringing, and easy irritation. I’d finally named the demon. Now I knew whom to fight. Only problem was that now I had to fight it.
1 month ago I was additionally diagnosed with Sciatica, a disease that causes pain and weakness in the lower back, through the buttocks, and down the legs. By then, I could only stand or walk for 30 minutes at a time. Any more than that would leave me limping with pain.
Around the same time, my boss called me into his office and told me he wouldn’t be hiring me onto full-time staff because he didn’t have enough work for me to do. Despite my disappointment and fear for my future, I knew that I wasn’t happy at the company. The people were kind but gossipy and often talked over me. I was also miserable because I was spending 8 hours a day staring at a computer doing nothing, waiting for my Sciatica to flare because of the hard chair and waiting for my Fibromyalgia to flare because of the computer screen glare. I had a choice: either leave the company now and be happier or stay through the end of my internship to show my resolve. I decided to stay.
3 weeks ago, Jason and I had a pregnancy scare. Needless to say, we were paralyzed with fear and regret. Days later I swallowed my fear and, with my head hung low, swiped through Walgreen’s to buy a test. Negative. Oh the relief…
2 weeks ago I started feeling much more tired than usual. It started as morning fatigue but, over the course of a week, blew up into coma-like episodes. I would wake up feeling unrefreshed and, an hour later, I would feel like I’d been stung with 5 tranquilizers. My brain would become a foggy mush; when someone asked me a question, I could barely think of an answer, let alone give it through him or her. I was dying in a prison of exhaustion and I didn’t know why.
1 week ago my jaw began to click. Then it began to ache until it gave me severe headaches. Even after the pain subsided, my jaw would dislocate when I talked. I had TMJ.
I didn’t know what was wrong with me and I knew that, if I didn’t figure it out soon, I wouldn’t be able to work at all. I was sick. Really, really sick.
By Friday afternoon, I had completely unraveled. Clutching the edge of my desk, I desperately tried to restrain an explosion. Teetering on the edge of sanity, I sent Jason a series of quick, ambiguous text messages over the phone. I knew I was scaring him, but I couldn’t help it…I was scaring myself.
Within half an hour, I’d excused myself from work and flew home where he met me with a glass vase brimming with a dozen roses and baby’s breath. (Apparently, he was already on his way to my place when I contacted him. He’d planned to drop off the roses and leave me a note as a surprise...to make up for all the Almost Flowers [see old post] he gave me. The timing was uncanny…I don’t think it was coincidence, but rather a supreme act of grace on God’s part.) My eyes brimming with tears, I flew into his arms and said, “I’ve had a bad day…”
For the next several hours, he held me close and talked softly into my ear, telling me how much he missed me and loved me. There in his arms, I felt myself unclench in the one good thing I had left in this world: love.
This morning I visited the doctor – my third visit in 3 months. Thankfully, he is a conservative and caring doctor. The physical therapy I’d undergone for a month had failed to relieve my Sciatica pain, but he still wasn’t willing to try surgery. Instead, he gave me a lidocaine shot in one of my most painful areas and then prescribed a medication for the Sciatica pain.
As for the fatigue, there are many possibilities. However, he suspects that I have…are you ready for this?…infectious mononucleosis.…fondly nicknamed “the kissing disease” or “mono”. Believe it or not, this is GOOD NEWS. Other possible causes, like Fibromyalgia, Hypothyroidism, or Chronic Fatigue Syndrome, are MUCH harder to treat. At least with Mono, I know it will pass in a few months.
So I have a little more hope this morning. I have to go back in a week for more blood tests to test for the Epstein-Barr Virus (cause of Mono). Then in another month I go back to the doctor’s for more follow-up and a possible CT scan.
In the meantime, I’m nursing a persistent sore throat that I’ve had since the fatigue sent in. I’m trying my best to listen closely to my body, stay hydrated, shoot myself up with vitamins, and sleep a lot.
On a side note, I’ve decided to see my internship ending as an opportunity to reevaluate my career path. While I’m not giving up on my dream of being a copywriter, I realize that the job as a whole is very unstable. Plus, sitting on a hard chair staring at a computer screen for 8 hours a day is really taking a toll on my health. SO…last week I decided to try my hand at being a full-time nanny. I found a wonderful family with a sweet, adorable 11-month-old boy named Max. Tonight I am looking after him for 3 hours as my first “test”. I really want this job! I’ll let you know what happens…
P.S. Thanks for reading this entire spiel! Bet you’re as tired as I am now!
I think I’m ready now.
I was born on June 18, 1983. I was perfectly healthy except for an unexplained and dreadfully slow metabolism. For the first few years, it was my mom’s problem. For the rest of my life, it was mine – my humiliating, debilitating problem.
When I was 13, I went through the Adam back-bend test with school. Eyebrows were raised so I was sent to the pediatrician, where she diagnosed me with Scoliosis and sent me home. For the next few years, my mother and I bounced from orthopedist to physical therapist, hoping for an answer to my lower back pain. Nothing worked.
I was 19 when the real pain started. It radiated from my neck, down my shoulders, into my shoulder blades, and through the small of my back. Then my joints started to ache. My parents enrolled me into a strict, life restrictive Scoliosis program in Baton Rouge. For 2 years I gave up my entire way of life and skipped vacations so I could live 24/7 in my back brace. I was put on a strict diet and exercise program with innumerable contraptions. I watched my life pass me by…with each tick of the clock, I lost a little more hope that I’d ever be normal or pain-free.
I was 21 when I decided to live. I threw all my body braces, electrical contraptions, and special pills into my closet, gave it the bird, and said, “Fuck you, I’m going to find another way.” In truth, I didn’t know if there was another way. Meanwhile, my body screamed in pain.
2 months ago I was diagnosed with Fibromyalgia, a mysterious disease whose main characteristic is chronic pain very similar to rheumatoid arthritis. All the pain I had been experiencing for 3 years had been from Fibromyalgia, not Scoliosis. I also fit the bill of other Fibromyalgia symptoms: headaches, fatigue, easy bruising, ear ringing, and easy irritation. I’d finally named the demon. Now I knew whom to fight. Only problem was that now I had to fight it.
1 month ago I was additionally diagnosed with Sciatica, a disease that causes pain and weakness in the lower back, through the buttocks, and down the legs. By then, I could only stand or walk for 30 minutes at a time. Any more than that would leave me limping with pain.
Around the same time, my boss called me into his office and told me he wouldn’t be hiring me onto full-time staff because he didn’t have enough work for me to do. Despite my disappointment and fear for my future, I knew that I wasn’t happy at the company. The people were kind but gossipy and often talked over me. I was also miserable because I was spending 8 hours a day staring at a computer doing nothing, waiting for my Sciatica to flare because of the hard chair and waiting for my Fibromyalgia to flare because of the computer screen glare. I had a choice: either leave the company now and be happier or stay through the end of my internship to show my resolve. I decided to stay.
3 weeks ago, Jason and I had a pregnancy scare. Needless to say, we were paralyzed with fear and regret. Days later I swallowed my fear and, with my head hung low, swiped through Walgreen’s to buy a test. Negative. Oh the relief…
2 weeks ago I started feeling much more tired than usual. It started as morning fatigue but, over the course of a week, blew up into coma-like episodes. I would wake up feeling unrefreshed and, an hour later, I would feel like I’d been stung with 5 tranquilizers. My brain would become a foggy mush; when someone asked me a question, I could barely think of an answer, let alone give it through him or her. I was dying in a prison of exhaustion and I didn’t know why.
1 week ago my jaw began to click. Then it began to ache until it gave me severe headaches. Even after the pain subsided, my jaw would dislocate when I talked. I had TMJ.
I didn’t know what was wrong with me and I knew that, if I didn’t figure it out soon, I wouldn’t be able to work at all. I was sick. Really, really sick.
By Friday afternoon, I had completely unraveled. Clutching the edge of my desk, I desperately tried to restrain an explosion. Teetering on the edge of sanity, I sent Jason a series of quick, ambiguous text messages over the phone. I knew I was scaring him, but I couldn’t help it…I was scaring myself.
Within half an hour, I’d excused myself from work and flew home where he met me with a glass vase brimming with a dozen roses and baby’s breath. (Apparently, he was already on his way to my place when I contacted him. He’d planned to drop off the roses and leave me a note as a surprise...to make up for all the Almost Flowers [see old post] he gave me. The timing was uncanny…I don’t think it was coincidence, but rather a supreme act of grace on God’s part.) My eyes brimming with tears, I flew into his arms and said, “I’ve had a bad day…”
For the next several hours, he held me close and talked softly into my ear, telling me how much he missed me and loved me. There in his arms, I felt myself unclench in the one good thing I had left in this world: love.
This morning I visited the doctor – my third visit in 3 months. Thankfully, he is a conservative and caring doctor. The physical therapy I’d undergone for a month had failed to relieve my Sciatica pain, but he still wasn’t willing to try surgery. Instead, he gave me a lidocaine shot in one of my most painful areas and then prescribed a medication for the Sciatica pain.
As for the fatigue, there are many possibilities. However, he suspects that I have…are you ready for this?…infectious mononucleosis.…fondly nicknamed “the kissing disease” or “mono”. Believe it or not, this is GOOD NEWS. Other possible causes, like Fibromyalgia, Hypothyroidism, or Chronic Fatigue Syndrome, are MUCH harder to treat. At least with Mono, I know it will pass in a few months.
So I have a little more hope this morning. I have to go back in a week for more blood tests to test for the Epstein-Barr Virus (cause of Mono). Then in another month I go back to the doctor’s for more follow-up and a possible CT scan.
In the meantime, I’m nursing a persistent sore throat that I’ve had since the fatigue sent in. I’m trying my best to listen closely to my body, stay hydrated, shoot myself up with vitamins, and sleep a lot.
On a side note, I’ve decided to see my internship ending as an opportunity to reevaluate my career path. While I’m not giving up on my dream of being a copywriter, I realize that the job as a whole is very unstable. Plus, sitting on a hard chair staring at a computer screen for 8 hours a day is really taking a toll on my health. SO…last week I decided to try my hand at being a full-time nanny. I found a wonderful family with a sweet, adorable 11-month-old boy named Max. Tonight I am looking after him for 3 hours as my first “test”. I really want this job! I’ll let you know what happens…
P.S. Thanks for reading this entire spiel! Bet you’re as tired as I am now!
posted by The mini ninja at 5:04 PM
11 Comments:
Good luck with the new job, honey! Take care of yourself, sounds like Jason is doing a great job being there for you when you need him.
Good luck with the Nanny gig.
Glad to hear you are figuring out your medical problems. Mono isn't the worst thing, and now that you know it should be easy to beat.
Rest up sweetie and let life take care of itself for a week or two. I am a firm believer in the fact that everything always works out for the best because the big guy knows what he's doing.
I am so jealous that you get to try out being a nanny. I think that was supposed to be my calling in life and I missed out. I'm sure you'll be PERFECT! Hope you have a great time!
heh, and here I would have loved to have been a copywriter....different strokes I guess. Anyway, 3 weeks ago I had a pregnancy scare too! I'm glad you admitted it first *whew!* test came back negative, but I am still not getting a visit from aunt flo...I was excited because for 4 straight months i've been regular, and now it seems that PCOS has again reared it's ugly head.
also, a close friend of ours has fibromyalgia, and she is so exhausted from it, she often has to quit her job and has so little energy at points she was unable to lift her head to take a sip of water off of the pillow....just a thought for ya...hope you get better.
Hi Leslie - Sounds like we've both been struggling to give birth to a blogpost! Ouch - do I gather you spent two years in a back brace but the problem wasn't relevant to the supposed cure??? Bummer!!
Mono is sooo American! We don't get it over here, or our GPs don't recognise it. Just like the French solution for everything is related to their liver function!! guess the Brits just stoically stick to their tea and aspirin!!! ;-)
Seriously, have you investigated food intolerances? Yes, I realise that may sound like it came out of left field...and kinesiology and sacro-cranial osteopathy. If you were my daughter, I'd have you on those couches before you could say 'those kids will adore having you care for them'. What a wise choice you're making. :-)
You are going through a lot, but fighting well. And I can so see you as a nanny!
Leslie, I'm so sorry to hear that you're suffering so badly. I'd never know from your posts that you were going through so much. You are a terrific writer, but I'm glad that you have the opportunity to do something that will give you such joy. And Jason sounds like a gem. All the best to you.
I knwo that with auto immune diseases that if you have one then you are likely to have another...I am especially sad to hear you ahve fibromyalgia--it's a terrible painful disease that doesn't get the respect is deserves from outsiders. My mom has Anklyosing Spondylitis and I have Osteoarthritis, Sciatica and something else that we haven't figured out yet. So if you ever need to vent to someone who understands just how hard it is somedays to get through the day with pain...the feel free to email me. hazel100@gmail.com
*Jason sounds wonderful!
Wow: you have quite a bit going on these days! It's wonderful that you have such a great guy sticking by your side through all of this.
And hey: if all else fails, and you just have to scream just remember how great it felt to stomp your feet! ;)
Mono?!
(That's as far as I got reading your post because I am tired, too... feeling a lot like I did when *I* had mono my Junior year of high school.)
Hugs to you.
Gab At Les
<< Home