Here's my "secret": I'm in pain almost all of the time. I try to deny it even to myself on all but my worst days. I don't like to talk about it that much because talking about it makes it real. And I don't want to sound like a whiney wimp, either. I dream of being the strong, limber person that I was 10 years ago. But some days I cannot deny the pain and fatigue because it is overwhelming. Today is one of those days.
It started immediately upon waking. I had the lower abdominal pain that I've been facing for 5 months now from the minute I woke up. This newish pain was supposedly from the ovarian cyst that they found on CT scan in February. But the cyst was gone at the beginning of April on ultrasound. And the pain is still there. And I am also having the back pain again that I was supposedly experiencing from my kidney stones in February and March. Well, those were crushed by lithotripsy and passed and the last X-ray in March showed no kidney stones remaining. So, I either have new ones (please no) or the pain wasn't really from the stones at all. Is it all from fibromyalgia?
See, this is what they tell me I have: fibromyalgia. It means that I have widespread pain and fatigue that comes and goes with very little warning. I also have stomach trouble that keeps me from eating dairy (oh ice cream, how I long for you!) and "brain fog" which makes me forget words while I'm speaking among other things like putting the wet clothes that I 've just put in the dryer back into the washer. I've been given this diagnosis by 3 different doctors over the past 7 years or so. And each time I wish they would tell me that I have something else. Something more treatable. Something that you can take a pill for. Something that people have heard of and believe in. Well, there are a handful of pills now approved by the oh-so-estimable FDA for treatment of fibromyalgia. And more people have heard of it now than had heard of it when I was first diagnosed 7 years ago. But I still hate it. And I'm embarrassed to say that I'd rather have something else. (I know, I know, be careful what you wish for...)
But here's the thing: I don't LOOK SICK. And, of course, I don't want to look sick. But, feeling like shit and looking normal can be so very frustrating sometimes. People expect me to be able to continue saving the world like I do, and then when I a) forget the special cookies for daycare or b) have to take a nap instead of playing with my kids or c) just plain old do not feel up to dealing with the public at work or, honestly, even my own family, well, then I just feel guilty. I do not allow myself to say to anyone "I am having a major fibromyalgia flare and I will not be able to lead small group this week at church." I do not take sick days from work. I do not really slow down that much until I get home and then I will often crash. Dishes and dirty clothes pile up around me. The dog lays down next to me gratefully because too much motion makes her nervous and here is finally someone who will sit still with her for a bit.
Tonight I am at work typing through the pain of majorly aching fingers and hands. I think of the pain meter they ask you about at the dr. "How much pain are you in on a scale of 1 to 10 with 10 being the most pain?" Uh, well, I've had two babies pass through my body, so that was 10... so I guess this is a 7?? Every pain I have now is colored by that ultimate pain of childbirth. I'm not sure if this helps my cause or not. Maybe the finger pain is really a 9. I can say that in the realm of finger pain that I have endured in the past, today is worse than I've ever had. But my fingers aren't swollen. You can't tell that my fingers hurt if you just look at them. Thumbs to pinkies ache like an old arthritic woman. Wrists and hands and arms, too.
And then there are my hips. Ah, the old hips. When I was prego with Nate, my hips hurt so much that Maia started saying that her hips were hurting. Maybe they were, who knows. But I have to say that at age 33, it really sucks to not be able to walk a fast mile like I used to for exercise. I can walk 15 minutes now at a medium pace, maybe 25 minutes on a good day, before my hips will start hurting. On a bad day, however, they hurt all of the time regardless of whether or not I am sitting, standing, or walking. That being today, I find myself shifting around frequently at work to try to "shake out" the pain a bit. I have started noticing that I walk like my mother. She was born breach with genetic hip dysplasia and got two, new bionic hips 2 years ago. But I wasn't born breach. Mine is just fibromyalgia. Just...
I know that I need to see the chiropractor when I start to feel this way, and I may have to try for a lunch-hour appointment on Friday. Typically that will help my whole body feel better for a while. But what I am most concerned about right now is the abdominal pain that only subsides for a few days and then comes back with a vengeance. It has turned into a burning, spreading pain now and I know that if I go to the dr they will want to do more tests. I already owe the hospital over $1000 right now, and I don't want to waste time and money to undergo more tests that will come back saying that I look normal. I know that I look normal. I always look normal, even on the inside. (Well, almost always.) I have seen the MRI scans of my own brain. Normal!! Well, I'll be! Tell me it's normal while I'm having a seizure, then, if it's so normal. And when they DID find things wrong with me, the ovarian cyst and kidney stones, those were also maybe not the source of my actual pain. Suffice it so say, I don't believe much of what they tell me anymore after I have tests done.
Unfortunately, the people who bear the brunt of my whining and complaining are those closest to me, and to them I want to apologize for any complaining and carrying on I do about my pain and discomfort and exhaustion. To the rest of the world, I try to put on a happy face. When I have a migraine I usually take some meds and stick it out at work. Back and neck pain waits weeks sometimes until I can see the chiropractor without having to alter my work schedule. On days like today, however, it is almost impossible. I am trying to ride out the evening at work without totally snapping on the creepy guy who thinks he needs kids books (who has been told before not to come upstairs unless his kids are with him because he is clearly stalking me....) And then I will go home and collapse. And my kids will need me and Shad will still be painting the bedroom and nobody will be ready for bed yet at 8:30. I will just want to close my eyes, lay on the bed and let the fan blow cool air on my skin. My normal, albeit pale, skin that doesn't look sick in any way, that doesn't bely the pain that festers beneath it.
Wednesday, May 20, 2009
Wednesday, March 04, 2009
Pebbles Huddlestone's Hurry Up And Wait Diary '09
How sad is it that I haven't blogged one time yet in 2009? What is up with that?
Well, lots of things are up with that, namely root canals, kidney stones, ovarian cysts and other painful things like trying to sell our house (so far, I think that is the most painful of them all, so much do I hate moving). Yes, 2008 ended with me chewing all of my holiday goodies on the right side of my mouth because I hadn't yet made it to the endodontist (scared and then also too much ice on the road the day of my first appointment) for the dreaded root canal to fix my bad tooh on the left side of my mouth. So, January 12th, my mommy took me to Decatur for my very first root canal. It was nice of my mother to drive me. And the procedure itself was actually not that bad. Really. It wasn't any worse than getting an extended filling. And it didn't hurt afterwards. Until the next day.
And then it hurt for three weeks. All of the time. And I couldn't chew on the left side of my mouth still. I took constant ibuprofen and listened to my mother warn me that I would ruin my stomach. The dentist in town gave me an antibiotic in case I had an infection. It still hurt. I finally went in to have the tooth filed down and prepped for a crown and that seemed to fix it but the three weeks in between sucked. Evidently I grind my teeth at night and that had aggrivated it. Nice. I cause my own pain and misery while I sleep.
Enter pelvic pain. Yes, whilst I was enduring the tooth pain, I started to have pretty sharp pain in my ovary area. My right ovary. After a few weeks of this, I couldn't sleep for three nights and decided I better see the doctor. That was the first week of February. Two days later I had a CT scan of my entire abdomen for which I had to drink 40 ounces of water AND be injected with dye. I peed four times while waiting for them to call me for the test. I almost peed on the table during the test. I thought I might die from the pain of having to pee so badly (or at least of embarrassment when I peed everywhere). Leave it to me to have pain during a CT scan which is a relatively painless procedure.
It took 6 days for the doctor to call me with the results of the scan:
"Laura, you have 4 kidney stones and a large ovarian cyst."
"Ok, well, that's why I feel like crap then, huh."
I went back to the doctor the next day. She was unconcerned with the stones, which were in my left kidney. Said they were small and I would pass them without noticing. She said that the cyst (on my left ovary, even though the pain was on my right side) was 5cm, big enough to need to be removed, and they called the ob/gyn for me to try to get me in soon.
It was a week before I could get in. Nevermind that I was in pain. And even then I had to visit my ob/gyn in her Savoy office instead of her Charleston office. You know, Charleston which is 10 minutes from my house as opposed to Savoy which is 45 minutes from my house. But whatever. My mommy took me.
While I was there they did the regular yearly exam and took blood to check for the ovarian cancer marker. The ob/gyn examined me to find.... Nothing. She did not think that I could have a 5cm ovarian cyst. She said that she would be able to feel it if I did have one and she couldn't feel it. Plan of action: ultrasound in 4 weeks to check on the girls. Come with a full bladder. Awesome.
In the meantime... we put our house on the market and it started showing immediately. It showed more than 10 times in 2 1/2 weeks. We were exhausted from getting the house ready and exhausted from keeping it tidy. (They say that if you do something for 3 weeks it will become a habit. Does that mean that I will make my bed from now on and swiffer the floors every day? I doubt it.) Also in the meantime, while the pelvic pain had dissipated some, I had started to have back pain. Sometimes sharp, shooting pain and sometimes crampy, achey pain. On both sides. The pain was directly where my kidneys are. Kidneys that are harboring stones, or at least one of them was.
I did get a letter in the mail that the test for the ovarian cancer marker was negative, so that made me feel better. But then I got a call from the ob/gyn office to say that my pap came back abnormal. And they were sending the sample out to check for how bad it was. What? Well, a pap smear only checks for one thing: HPV which causes cervical cancer. And HPV is an STD. WTH? Yeah. And they would call me in a WEEK to tell me what was going on. (Ok, I will spare you the details here, but suffice it say I was sufficiently freaked out and we had some heated discussions at home that mostly ended in us not talking to each other much for a few days.)
Well, two days ago, just shy of 3 weeks on the market, our house got an offer from a woman who is buying with cash. My mother-in-law, our realtor, calls her a Cash Buyer. This is supposed to be a really good thing because it means that she will not need to get a loan and we don't have to worry about trouble on that end of the sale. This lady looked at our house 3 times last week and never with a lot of notice, either, but we managed to get the dog out and get the kids out and all of that so that the Cash Buyer could keep looking the house over. After her viewing on Saturday, we were told that she really liked it and wanted to see the utilities reports. That's a good sign that you're going to get an offer. And we waited and waited, and then finally on Monday the call came in. She had offered lower than we were hoping but it was CASH and also she only wanted a partial inspection. Her offer was non-negotiable.
Fine. We accepted the offer and said that we would not be fixing anything for her in the house due to the low offer but we would take it. And we all signed on it. That was Monday. And we made an offer on the house we have been waiting to offer on for a month now. And it was accepted. Great.
Yesterday, Tuesday, Shad was home with Maia (who developed a lovely stomach flu onMonday night, of course). He received no fewer than 7 calls from his mother, the realtor, about the inspection. The Cash Buyer first decided that she didn't want any inspection at all. Weird, but ok. Later in the day she wanted not only an inspection, but a full inspection, which was contrary to the paper that we all signed detailing her offer and her wish for a partial inspection only. But if we didn't go ahead and grant her the full inspection then it would look like we have something to hide, which we don't have. So, we were forced to allow the full inspection. Well, she wanted it today, Wednesday. Fine. Whatever. And now we are still waiting tonight to hear how the inspection went and with every passing minute my stomach feels sicker and sicker that this strange, wishy-washy woman is going to find some reason to not buy our house.
But I've had other things to occupy my mind like...
The pap results. Which came back negative for HPV. They called me yesterday, one week to the day, as promised. It had been a false positive. Big relief and WHY did that have to happen in the middle of all this? I apologized to my husband for accusing him of giving me a disease. Not that I really blamed him, but I still accused him, you know?
Today, one month after my first dr. appt. and CT scan, I went back to the doctor for the stones. I have been drinking liters of water and cranberry juice, visiting the girls room more than I wish to in an effort to float the suckers out in some kind of tidal wave, but I still have pain in my kidneys. The stones have not passed. The doctor said I should see the urologist. They called for me to try to get me in soon. Sound familiar?
The urologist's office said to come RIGHT AWAY. As in, right that minute. Come now to our office and see our doctor, poor dear girl who is in pain and needs a professional opinion quickly. I went. I peed in the cup. I wore the paper tablecloth. I saw my kidneys (and all of my other organs) on a Dell flat screen where my CT scan from one month ago was detailed in excellent black and white, slices of my kidneys displayed to reveal, AH HA, stones in both kidneys.
And the doctor said:
"I'm not convinced that your pain is from your kidney stones."
WTH? I have pain in my kidneys, and there are stones in them. Why would the pain NOT be from the kidney stones? He says that the location of the stones are not painful spots. Well, right, and when I had the CT scan done a month ago they DIDN'T HURT YET. But now they do. Quite a bit, actually. So, he said he will do lithotripsy on them to crush them into powder so they will pass. But he doesn't know that it will end my pain. He gave me a prescription for Vicodin.
I am confused. But the longer I sit here today and think about it and the more my back hurts, the more I think that I will call and schedule the lithotripsy. Of course, like it's the rocko-planes at the county fair, they only have the super high-tech travelling lithotripsy machine at our country bumpkin hospital every other week. So, I'll have to wait because it was just here this Monday.
And that has been the saga of my first 9 weeks of 2009. I was hoping that by the time I finished this writing that I could end it with news that the inspection of our house went well and that we will be moving in a few weeks. (Did I mention that the Cash Buyer also wants to close in 3 weeks and we said ok because we had to? THREE WEEKS! Well, the bank isn't sure they can have it all ready in 3 weeks, but we'll see.) Alas, as of almost 7pm, we have no word on the inspection.
And I am still waiting...
Well, lots of things are up with that, namely root canals, kidney stones, ovarian cysts and other painful things like trying to sell our house (so far, I think that is the most painful of them all, so much do I hate moving). Yes, 2008 ended with me chewing all of my holiday goodies on the right side of my mouth because I hadn't yet made it to the endodontist (scared and then also too much ice on the road the day of my first appointment) for the dreaded root canal to fix my bad tooh on the left side of my mouth. So, January 12th, my mommy took me to Decatur for my very first root canal. It was nice of my mother to drive me. And the procedure itself was actually not that bad. Really. It wasn't any worse than getting an extended filling. And it didn't hurt afterwards. Until the next day.
And then it hurt for three weeks. All of the time. And I couldn't chew on the left side of my mouth still. I took constant ibuprofen and listened to my mother warn me that I would ruin my stomach. The dentist in town gave me an antibiotic in case I had an infection. It still hurt. I finally went in to have the tooth filed down and prepped for a crown and that seemed to fix it but the three weeks in between sucked. Evidently I grind my teeth at night and that had aggrivated it. Nice. I cause my own pain and misery while I sleep.
Enter pelvic pain. Yes, whilst I was enduring the tooth pain, I started to have pretty sharp pain in my ovary area. My right ovary. After a few weeks of this, I couldn't sleep for three nights and decided I better see the doctor. That was the first week of February. Two days later I had a CT scan of my entire abdomen for which I had to drink 40 ounces of water AND be injected with dye. I peed four times while waiting for them to call me for the test. I almost peed on the table during the test. I thought I might die from the pain of having to pee so badly (or at least of embarrassment when I peed everywhere). Leave it to me to have pain during a CT scan which is a relatively painless procedure.
It took 6 days for the doctor to call me with the results of the scan:
"Laura, you have 4 kidney stones and a large ovarian cyst."
"Ok, well, that's why I feel like crap then, huh."
I went back to the doctor the next day. She was unconcerned with the stones, which were in my left kidney. Said they were small and I would pass them without noticing. She said that the cyst (on my left ovary, even though the pain was on my right side) was 5cm, big enough to need to be removed, and they called the ob/gyn for me to try to get me in soon.
It was a week before I could get in. Nevermind that I was in pain. And even then I had to visit my ob/gyn in her Savoy office instead of her Charleston office. You know, Charleston which is 10 minutes from my house as opposed to Savoy which is 45 minutes from my house. But whatever. My mommy took me.
While I was there they did the regular yearly exam and took blood to check for the ovarian cancer marker. The ob/gyn examined me to find.... Nothing. She did not think that I could have a 5cm ovarian cyst. She said that she would be able to feel it if I did have one and she couldn't feel it. Plan of action: ultrasound in 4 weeks to check on the girls. Come with a full bladder. Awesome.
In the meantime... we put our house on the market and it started showing immediately. It showed more than 10 times in 2 1/2 weeks. We were exhausted from getting the house ready and exhausted from keeping it tidy. (They say that if you do something for 3 weeks it will become a habit. Does that mean that I will make my bed from now on and swiffer the floors every day? I doubt it.) Also in the meantime, while the pelvic pain had dissipated some, I had started to have back pain. Sometimes sharp, shooting pain and sometimes crampy, achey pain. On both sides. The pain was directly where my kidneys are. Kidneys that are harboring stones, or at least one of them was.
I did get a letter in the mail that the test for the ovarian cancer marker was negative, so that made me feel better. But then I got a call from the ob/gyn office to say that my pap came back abnormal. And they were sending the sample out to check for how bad it was. What? Well, a pap smear only checks for one thing: HPV which causes cervical cancer. And HPV is an STD. WTH? Yeah. And they would call me in a WEEK to tell me what was going on. (Ok, I will spare you the details here, but suffice it say I was sufficiently freaked out and we had some heated discussions at home that mostly ended in us not talking to each other much for a few days.)
Well, two days ago, just shy of 3 weeks on the market, our house got an offer from a woman who is buying with cash. My mother-in-law, our realtor, calls her a Cash Buyer. This is supposed to be a really good thing because it means that she will not need to get a loan and we don't have to worry about trouble on that end of the sale. This lady looked at our house 3 times last week and never with a lot of notice, either, but we managed to get the dog out and get the kids out and all of that so that the Cash Buyer could keep looking the house over. After her viewing on Saturday, we were told that she really liked it and wanted to see the utilities reports. That's a good sign that you're going to get an offer. And we waited and waited, and then finally on Monday the call came in. She had offered lower than we were hoping but it was CASH and also she only wanted a partial inspection. Her offer was non-negotiable.
Fine. We accepted the offer and said that we would not be fixing anything for her in the house due to the low offer but we would take it. And we all signed on it. That was Monday. And we made an offer on the house we have been waiting to offer on for a month now. And it was accepted. Great.
Yesterday, Tuesday, Shad was home with Maia (who developed a lovely stomach flu onMonday night, of course). He received no fewer than 7 calls from his mother, the realtor, about the inspection. The Cash Buyer first decided that she didn't want any inspection at all. Weird, but ok. Later in the day she wanted not only an inspection, but a full inspection, which was contrary to the paper that we all signed detailing her offer and her wish for a partial inspection only. But if we didn't go ahead and grant her the full inspection then it would look like we have something to hide, which we don't have. So, we were forced to allow the full inspection. Well, she wanted it today, Wednesday. Fine. Whatever. And now we are still waiting tonight to hear how the inspection went and with every passing minute my stomach feels sicker and sicker that this strange, wishy-washy woman is going to find some reason to not buy our house.
But I've had other things to occupy my mind like...
The pap results. Which came back negative for HPV. They called me yesterday, one week to the day, as promised. It had been a false positive. Big relief and WHY did that have to happen in the middle of all this? I apologized to my husband for accusing him of giving me a disease. Not that I really blamed him, but I still accused him, you know?
Today, one month after my first dr. appt. and CT scan, I went back to the doctor for the stones. I have been drinking liters of water and cranberry juice, visiting the girls room more than I wish to in an effort to float the suckers out in some kind of tidal wave, but I still have pain in my kidneys. The stones have not passed. The doctor said I should see the urologist. They called for me to try to get me in soon. Sound familiar?
The urologist's office said to come RIGHT AWAY. As in, right that minute. Come now to our office and see our doctor, poor dear girl who is in pain and needs a professional opinion quickly. I went. I peed in the cup. I wore the paper tablecloth. I saw my kidneys (and all of my other organs) on a Dell flat screen where my CT scan from one month ago was detailed in excellent black and white, slices of my kidneys displayed to reveal, AH HA, stones in both kidneys.
And the doctor said:
"I'm not convinced that your pain is from your kidney stones."
WTH? I have pain in my kidneys, and there are stones in them. Why would the pain NOT be from the kidney stones? He says that the location of the stones are not painful spots. Well, right, and when I had the CT scan done a month ago they DIDN'T HURT YET. But now they do. Quite a bit, actually. So, he said he will do lithotripsy on them to crush them into powder so they will pass. But he doesn't know that it will end my pain. He gave me a prescription for Vicodin.
I am confused. But the longer I sit here today and think about it and the more my back hurts, the more I think that I will call and schedule the lithotripsy. Of course, like it's the rocko-planes at the county fair, they only have the super high-tech travelling lithotripsy machine at our country bumpkin hospital every other week. So, I'll have to wait because it was just here this Monday.
And that has been the saga of my first 9 weeks of 2009. I was hoping that by the time I finished this writing that I could end it with news that the inspection of our house went well and that we will be moving in a few weeks. (Did I mention that the Cash Buyer also wants to close in 3 weeks and we said ok because we had to? THREE WEEKS! Well, the bank isn't sure they can have it all ready in 3 weeks, but we'll see.) Alas, as of almost 7pm, we have no word on the inspection.
And I am still waiting...
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