I think I'm having a flare. I have mouth ulcers, feel crummy, and running a bit of a low grade temp....even if the thermometer says "98.6" that's not normal for me. That's a bit of a fever. And thirsty! My gosh, i could drink the lake dry.....although in this drought-stricken part of TX, the lakes wouldn't be that much to drink.....we need some rain. Woke up this morning to the sound of thunder. Just a few sprinkles, then nothing. Back to 103 degrees today.
And if dealing with a flare isn't enough, there is the continuing saga of the Social Security mess made when I made a simple request to file for disability.
I was, for some strange reason, treated as a new SS Recipient, with a welcome and everything. Trying to unravel that error involved three trips to the local Fort Worth SSA office, and today I discovered I no longer exist in any pharmacy files. I know, because Walgreen's had no information on me, and I couldn't get my Lantus.
Besides having lupus, I also have diabetes, and must take Humalog during the day and Lantus at night. It was time to refill the Lantus yesterday. Son went up to Walgreen's and they said I wasn't in their records. Have I died? Evidently.
WalMart gave me a refill of amitryptiline but charged $10.00. I will get reimbursed, I heard when I called my Medicare Provider, Secure Horizons. After some time of clicking and typing heard on the other end of the phone, they said it was all okay, now.
Until the next time Social Security decides I don't exist.
If you want something really messed up, go to any government agency. Tell 'em I sent ya.....
Lupus
Social Security
Tuesday, August 30, 2011
Thursday, August 4, 2011
How Weather Affects Us
I have a problem with the heat that is currently cloaking N Central TX like a heavy overcoat. Yesterday was 110 degrees, give or take a degree or so.
I'm praying the air conditioner holds out and continues to keep my house cool. I hate to go outside in this heat, so when I have an errand to run, I do that in the early morning, when it's "cooler" -- say, 90 degrees or so.
I know I sound like a big baby, but I literally cannot tolerate the heat.....my body rebels and I might find myself in the hospital if I'm not careful. I also find myself getting kind of paranoid about possibly being stranded on the road if my car conks out....I can hear you asking, "What about the winter time? Wouldn't you just about freeze to death if you were stranded in the snow?" Well, yeah. But I would hope that I have enough good sense to wear protective clothing, maybe even throw a blanket in the back seat, and get out of the biting wind by sitting in the car.....
It's soooo much different in the summer heat. You can't remove any more clothing than what's covering you now....there are laws about that. You can't sit in the car while you're waiting for help -- that would be counterproductive, since the car would just block any vagrant, although hot, breeze. And, anyone with lupus MUST stay out of the sun.
So you can see why this season is hard on me. And on anyone who has lupus.
I'm waiting for October. It might be cooler by then.
I'm praying the air conditioner holds out and continues to keep my house cool. I hate to go outside in this heat, so when I have an errand to run, I do that in the early morning, when it's "cooler" -- say, 90 degrees or so.
I know I sound like a big baby, but I literally cannot tolerate the heat.....my body rebels and I might find myself in the hospital if I'm not careful. I also find myself getting kind of paranoid about possibly being stranded on the road if my car conks out....I can hear you asking, "What about the winter time? Wouldn't you just about freeze to death if you were stranded in the snow?" Well, yeah. But I would hope that I have enough good sense to wear protective clothing, maybe even throw a blanket in the back seat, and get out of the biting wind by sitting in the car.....
It's soooo much different in the summer heat. You can't remove any more clothing than what's covering you now....there are laws about that. You can't sit in the car while you're waiting for help -- that would be counterproductive, since the car would just block any vagrant, although hot, breeze. And, anyone with lupus MUST stay out of the sun.
So you can see why this season is hard on me. And on anyone who has lupus.
I'm waiting for October. It might be cooler by then.
Monday, May 30, 2011
The Lupie as Caregiver....
My 52 year old son who lives with me, has been almost bedridden for the last month. After three trips to the ER, one by ambulance, we finally have a "sort of" diagnosis. Something is wrong with his back. He had focused on his knee, and the medical personnel at the ER focused on his knee, also. He was given a prescript for Vicodin, which made him sleep all the time, and surly.
At the third visit, we got a doctor who knew what he was doing. "It's bulging discs in your spine," he told him.
So he's now on Tramadol and seeing a specialist, who, God help us,. will no doubt order another MRI when we visit his office tomorrow. It seems each doctor wants his "own" test results, and this orthopedist seemed to think it's something other than disc problems, perhaps a pinched nerve.
Meanwhile, I am coping as best as I can, hoping to stave off a visit from my own medical nightmare, Lupus. I've been getting as much rest as I can, between fetching and carrying, and the house shows it. I'm fretting over the state of the house -- needs a good cleaning, but I can no longer do anything more than light housekeeping, and I sure can't afford a cleaning service.
I'm having overnight company on June 8th, before I go to OK for my high school reunion.
This is MY goal. I can't make my son's goal for him; that's between him and his doctor.
I'm so glad I know this. While I am concerned for my son's health, I am also remembering that if I'm knocked flat by a lupus flare, I'm no good to anybody.
So, lessons learned the hard way.....Take care of yourself. There's only so much a person can do.
My friend just might have to arrive to a house in disarray. And that's okay. I know she's not coming to see how I keep house, but coming to see ME. An old high school friend.
My job today is to just breathe.......
Lupus
At the third visit, we got a doctor who knew what he was doing. "It's bulging discs in your spine," he told him.
So he's now on Tramadol and seeing a specialist, who, God help us,. will no doubt order another MRI when we visit his office tomorrow. It seems each doctor wants his "own" test results, and this orthopedist seemed to think it's something other than disc problems, perhaps a pinched nerve.
Meanwhile, I am coping as best as I can, hoping to stave off a visit from my own medical nightmare, Lupus. I've been getting as much rest as I can, between fetching and carrying, and the house shows it. I'm fretting over the state of the house -- needs a good cleaning, but I can no longer do anything more than light housekeeping, and I sure can't afford a cleaning service.
I'm having overnight company on June 8th, before I go to OK for my high school reunion.
This is MY goal. I can't make my son's goal for him; that's between him and his doctor.
I'm so glad I know this. While I am concerned for my son's health, I am also remembering that if I'm knocked flat by a lupus flare, I'm no good to anybody.
So, lessons learned the hard way.....Take care of yourself. There's only so much a person can do.
My friend just might have to arrive to a house in disarray. And that's okay. I know she's not coming to see how I keep house, but coming to see ME. An old high school friend.
My job today is to just breathe.......
Lupus
Tuesday, April 19, 2011
And Another Eye Doctor Appointment....
It took about an hour to get into the exam room, have the tests done and then leave the facility yesterday, stunned at the information I need to remember. Fortunately, the technician handed me some written instructions for the day of the first surgery, scheduled for 6 AM on Tuesday, 26th. I'll be in a "twilight sleep" and can wear my own clothes, is the best of the information I absorbed. Fortunately, my son was with me, the voice of reason, he is, and he asked the pithy questions, mostly about "How Much" will all this cost?
We thought we knew, but we didn't count on getting prescription eye drops for pre-op and post-op use. So we went to our friendly neighborhood Walgreen's and asked the clerk to see how much this will set me back.
Heh. Too much. Over $160.00 in copays for three kinds of eye drops. The only good news is, I can use them for both surgeries. Big deal.
So I'm calling the dr's office to beg for samples. The tech implied that she might be able to get me some samples. I called the office yesterday and left a message for her to call back, but you all know it's the squeaky wheel that gets the grease.
I'm kind of bummed about the whole thing. One is the cost, of course. Another is believing that I'm really getting old.....which I am....and a third is, I don't do well with any kind of sedative. I tend to throw up. A lot.
Oh, and my blood pressure was really LOW. It is normally 120/80, but yesterday it was 90/60. Should I be concerned? The tech didn't say much, except that my heart rate was high. Can you say, "Anxiety?"
Oh, and btw, I asked the tech about the "wrinkle" on the retina on my left eye. Asked her if the doctor could fix it in this surgery.....
Heh. Of course not. I'll have to be referred to "a retina guy."
Trying not to cross that bridge before I come to it......
Who has more fun than a Lupie?
Lupus
We thought we knew, but we didn't count on getting prescription eye drops for pre-op and post-op use. So we went to our friendly neighborhood Walgreen's and asked the clerk to see how much this will set me back.
Heh. Too much. Over $160.00 in copays for three kinds of eye drops. The only good news is, I can use them for both surgeries. Big deal.
So I'm calling the dr's office to beg for samples. The tech implied that she might be able to get me some samples. I called the office yesterday and left a message for her to call back, but you all know it's the squeaky wheel that gets the grease.
I'm kind of bummed about the whole thing. One is the cost, of course. Another is believing that I'm really getting old.....which I am....and a third is, I don't do well with any kind of sedative. I tend to throw up. A lot.
Oh, and my blood pressure was really LOW. It is normally 120/80, but yesterday it was 90/60. Should I be concerned? The tech didn't say much, except that my heart rate was high. Can you say, "Anxiety?"
Oh, and btw, I asked the tech about the "wrinkle" on the retina on my left eye. Asked her if the doctor could fix it in this surgery.....
Heh. Of course not. I'll have to be referred to "a retina guy."
Trying not to cross that bridge before I come to it......
Who has more fun than a Lupie?
Lupus
Wednesday, April 13, 2011
More with the Eyes
Well, thanks to the Lovely Lady Lupe, I now have cataracts that need to be removed. Partially due to all the prednisone and Plaquenil I've had to take thru the years. Of course, I tell myself it has nothing to do with my age, which is getting right up there to the mid-70s. In fact, I have a birthday on Thursday, 21st. But all things considered, I'd rather have that birthday than not. Problem is, with my cataract surgery, I don't have the $$$ available, and they don't take American Express, which is my credit card. My only credit card. So what to do? I can postpone the surgeries and save up, which would take me until oh, April of 2020, maybe. I wonder what people do who can't afford this surgery and absolutely have to have it? I'm not too proud to look for alternatives in funding. Other than my grown kids, who have enough on their plates without taking on Mom's eye care. My daughter in CA has agreed to help me with my dental bills, which thanks to Sjogren's, are considerable, and my teeth really need to be cleaned and a cap put on one of my front teeth that is cracked, vertically. I told her if it cracks any more, I'll end up looking like a hillbilly with an IQ of 50. But back to the eye problems. I have a couple of days before I have to call and postpone, and my son is working hard to see how we can afford this.... I'm well aware that I have no money sense whatsoever, as my kids have been pointing out for years.... I tell them I'm an artiste, not an accountant. I have a day or two before we have to call and postpone, so we can "explore our options." Meaning, do we eat, or do we put gas in the cars, or have the eye surgery? It's about that bad, folks. I never thought I would be one of those Senior Citizens who would have to choose between groceries or medications, but I'm there. I need to order more Humalog and Lantus, and even with my co-pay, it's expensive. I get the Humalog via Canadian meds, so I save a bit there. Okay, enough of this. Everybody has problems. So far, I have a roof over my head, groceries in the pantry and fridge, enough gas in the car to get me to my doctor's appt. this afternoon (unrelated to this cataract thingy) and all is well, today. Wish me luck. Lupus
Wednesday, March 9, 2011
Eyes Again....
For about a month, I experienced daily auras in each eye (they took turns) and developed a twitching of my left eyelid. Constant. Daily.
So I had made an appointment with a neurologist to see what was going on.
And then the symptoms stopped. No more eye blinking, no more auras.
So for that I was glad. Didn't need the hassle of yet another referral to yet another doctor.
Until.....this week. They're baaaaaack.
Concensus among the Lupies yahoo group is the aura is probably caused by a migraine (painless) caused by stress, and they're probably right. I had been to Wal-mart to pick up a prescription and they had ONE person at the prescription counter. I waited 30 minutes in the drive through until I decided to hike into the facility and get my refill in person. And there was a line of six people. So I just sidled up to the person behind the sign that said "Consultation" and I said, as clearly and calmly as I could, "I know this is not your job. But I have been waiting for 30 minutes in the drive-through lane, and I would like to pick up my prescription NOW."
And she dropped what she was doing and went over to where the refills were stored and returned with my prescription. I thanked her as civilly as I could and returned home.
It was about thirty minutes later that my right eye developed the aura that was intense but beautiful(!) and it lasted for about half an hour.
Just the same amount of time I boiled over not getting my refill picked up.....
And as soon as the aura faded, my eyelid began to twitch.
Stress, huh? Just what I don't need.....
Lupus
So I had made an appointment with a neurologist to see what was going on.
And then the symptoms stopped. No more eye blinking, no more auras.
So for that I was glad. Didn't need the hassle of yet another referral to yet another doctor.
Until.....this week. They're baaaaaack.
Concensus among the Lupies yahoo group is the aura is probably caused by a migraine (painless) caused by stress, and they're probably right. I had been to Wal-mart to pick up a prescription and they had ONE person at the prescription counter. I waited 30 minutes in the drive through until I decided to hike into the facility and get my refill in person. And there was a line of six people. So I just sidled up to the person behind the sign that said "Consultation" and I said, as clearly and calmly as I could, "I know this is not your job. But I have been waiting for 30 minutes in the drive-through lane, and I would like to pick up my prescription NOW."
And she dropped what she was doing and went over to where the refills were stored and returned with my prescription. I thanked her as civilly as I could and returned home.
It was about thirty minutes later that my right eye developed the aura that was intense but beautiful(!) and it lasted for about half an hour.
Just the same amount of time I boiled over not getting my refill picked up.....
And as soon as the aura faded, my eyelid began to twitch.
Stress, huh? Just what I don't need.....
Lupus
Tuesday, March 1, 2011
The More I Learn, The Less I Know....
Life as a Lupie isn't easy. I'm fairly acquainted with most of the symptoms and medications used to treat this condition, but every once in a while, I'm kind of blindsided by another new symptom that reminds me that Lupus is Still Here.
This morning, after I finished taking my handful of necessary meds, I felt a strange tingling, then a feeling of numbness along my left leg, my left arm and hand.
OMG, I'm having a stroke, was my first thought. Yep, always go to the Worst Case Scenario, and then the REAL explanation won't seem nearly so bad. Right?
I then went to my computer to check my emails, and sure enough, there's an email from a fellow Lupie on the board, telling me about peripheral neuropathy.
Now, I have peripheral neuropathy in my feet, since I'm also a Type ! diabetic, so I'm acquainted wiith the feeling of pain/numbness/tingling if I don't take the Flexeril for a day or two. Of all my meds that I refill faithfully, this is the top one. I can do without the Plaquenil for a day, or the high blood pressure med, even, for a night, but oh, I can't do without the Flexeril.
I had tried Neurontin and had an adverse reaction after two weeks. I won't go into details, aren't you glad -- because I think I've already blogged about it earlier. Anyway, I told my rheumy of that awful experience, so we brainstormed on what type of med I could tolerate, and landed on good old Flexeril, which I had taken a long time ago.
So, long story short, now I know, thanks to the online support groups called LUPIES, a yahoo group, I have the information I needed to deal with this latest odd syndrome.
If you're reading this, and are not in a support group, go online to LUPIES@yahoogroups.com . You'll find answers to your questions and a whole lot of understanding.
Lupus
This morning, after I finished taking my handful of necessary meds, I felt a strange tingling, then a feeling of numbness along my left leg, my left arm and hand.
OMG, I'm having a stroke, was my first thought. Yep, always go to the Worst Case Scenario, and then the REAL explanation won't seem nearly so bad. Right?
I then went to my computer to check my emails, and sure enough, there's an email from a fellow Lupie on the board, telling me about peripheral neuropathy.
Now, I have peripheral neuropathy in my feet, since I'm also a Type ! diabetic, so I'm acquainted wiith the feeling of pain/numbness/tingling if I don't take the Flexeril for a day or two. Of all my meds that I refill faithfully, this is the top one. I can do without the Plaquenil for a day, or the high blood pressure med, even, for a night, but oh, I can't do without the Flexeril.
I had tried Neurontin and had an adverse reaction after two weeks. I won't go into details, aren't you glad -- because I think I've already blogged about it earlier. Anyway, I told my rheumy of that awful experience, so we brainstormed on what type of med I could tolerate, and landed on good old Flexeril, which I had taken a long time ago.
So, long story short, now I know, thanks to the online support groups called LUPIES, a yahoo group, I have the information I needed to deal with this latest odd syndrome.
If you're reading this, and are not in a support group, go online to LUPIES@yahoogroups.com . You'll find answers to your questions and a whole lot of understanding.
Lupus
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