hello!
August. sigh. What's up with the heat? I am happy to report that this has been an unusually cool summer here in my neck of the woods. Which is good. Because I melt in temperatures above 70 degrees. Evidently, one of the muscular dystrophies is very heat sensitive. When the temperature goes up, I get very weak, woozy, double vision, numb on one side of my head, and much more. My Neurologist wrote me a prescription for a Cooling Vest (MS patients use them, but so do race car drivers and mascot costume wearers) and I'll be asking my insurance company to see if it could be covered under my medical plan since the vest I need has a baseline price of $300-not including the accessories. Evidently, there's quite a bit of science involved in these cooling vests! You want 58 degrees, and long lasting without freeze burning yourself or overcooling the outside of the body and the inside temperature then paradoxically rises to compensate for the low skin temperatures. I hope the insurance will pay.
I started volunteering, and it's so much fun. I volunteer 2 hours a day, four days a week. I've been doing it since mid-May? Anyway, I've had 12 sick days and an excess of 21 doctor visits and 1 ER visit in this time. I can't imagine starting back to a paid job right now, as I'd probably lose that job lickety-split with all that time off for illness related problems.
Hmmmm, what else? I can't feel my right leg. It starts from the top of the hip to the sole of my foot. I've had patchy numbness on both legs for years, but this one runs deeper. It is so bizarre and I don't like the feeling.
You know what I'm especially thankful for? My family and friends that take the effort to try to understand and there are even quite a few now that can sense when I'm struggling! So, thanks everybody! You help keep my spirits up!
More later
Tuesday, August 10, 2010
Tuesday, May 4, 2010
11 months later
Hi,
Let's see, today is May 4th, 2010. It's been almost a year since my last post! Please forgive the absence!
So, how are things now? I am happy to report progress, I think I've hit a plateau though on ability. Thanks to my family, we reconfigured simple things like the kitchen cupboards so that all the dishes are now stowed near the dishwasher (less work to empty the dishwasher!), we put all the food in the upper cabinets to make it more accessible for me without aggrivating the symptoms I get when bending or lifting. I've redesigned my day so that I am ready to face the day before I go downstairs because I know I won't want to go back up if I can avoid it.
In July last year, I caught a cold and because of the heavy immune suppressants I ended up in the hospital for 6 days. Went home, rested for a couple of weeks, got the clearance to go on a vacation with my family. On day 3 of my vacation, ended up with another Lupus Flare and was hospitalized at Yale in Connecticuit. I spent most of the vacation in the hospital or in my hotel room while I sent the family to play. Thankfully, my brother and my sister in law lived near where we were staying for most of the trip, and it was a real blessing to spend more time with them. Oh! Another good thing, the "NON refundable" hotel reservation that I had???? They gave me my money back!
So, how are things now.......I do best: indoors, in temperatures less than 70 degress and on level surfaces, no sun. My thinking processes are smoother, I feel relief when I can reach and get things for myself. I am now doing some cooking, and I can wash dishes all by myself from start to finish. I have less double-vision and less blurry vision episodes. I keep my Mestinon on hand for when my body doesn't respond to my requests to MOVE.
I had hoped I would have made more progress by now, I look fine, I look normal but if I lift the laundry then I end up dizzy for hours and hours and hours.....the worst was when I inflated the air in my car tires...I could do it....but the dizziniess and wooziness that I had went on for the rest of the day.
I rode my bike this week! I rode it down my street and then turned around and made it halfway back! I no longer use a cane, or crutches but still can't walk in crowds worth a darn so I ask for wheelchair assistance or avoid it altogether. (want to go to Disney, but need to plan how to avoid the sun, heat and crowds) I also ask for help when walking down a slope and on uneven surfaces. Sometimes even ordinary things require an enormous amount of effort and I am fortunate that I have a few friends I can be real with, without fear of gossip or that they're going to share my story with anyone.....and that's a very good place to be.
I also want to thank my doctors because now, when I feel sick....I just send an email and POOF within 2 hours.....I get answers and treatment. I love how my world famous Lupus doctor says...."Teresa, parts of you are rocket science."
Since I haven't recovered as quickly or as throughly as I had expected/planned/hoped.....we are planning to sell our very tall 2 story house and move into a single story home. I hope it will be in my same neighborhood as we get more fog (less sun!!!!) and have cooler air and more wind here in my neighborhood. also, then I can get one of those rolling carts so I can push my laundry baskets around!!!!! At the rate I'm going with the organizing to move.....we won't have the house ready to sell for a year! LOL
So, that's a brief update. I'm celebrating my new record! What record is that???? LOL, It's been 9 months since my last hospitalization!!!!!!!! WHOOOOOOOOOeeeeeeeeeee!
Thanks you guys!!!!!!!
xo
TLC
Let's see, today is May 4th, 2010. It's been almost a year since my last post! Please forgive the absence!
So, how are things now? I am happy to report progress, I think I've hit a plateau though on ability. Thanks to my family, we reconfigured simple things like the kitchen cupboards so that all the dishes are now stowed near the dishwasher (less work to empty the dishwasher!), we put all the food in the upper cabinets to make it more accessible for me without aggrivating the symptoms I get when bending or lifting. I've redesigned my day so that I am ready to face the day before I go downstairs because I know I won't want to go back up if I can avoid it.
In July last year, I caught a cold and because of the heavy immune suppressants I ended up in the hospital for 6 days. Went home, rested for a couple of weeks, got the clearance to go on a vacation with my family. On day 3 of my vacation, ended up with another Lupus Flare and was hospitalized at Yale in Connecticuit. I spent most of the vacation in the hospital or in my hotel room while I sent the family to play. Thankfully, my brother and my sister in law lived near where we were staying for most of the trip, and it was a real blessing to spend more time with them. Oh! Another good thing, the "NON refundable" hotel reservation that I had???? They gave me my money back!
So, how are things now.......I do best: indoors, in temperatures less than 70 degress and on level surfaces, no sun. My thinking processes are smoother, I feel relief when I can reach and get things for myself. I am now doing some cooking, and I can wash dishes all by myself from start to finish. I have less double-vision and less blurry vision episodes. I keep my Mestinon on hand for when my body doesn't respond to my requests to MOVE.
I had hoped I would have made more progress by now, I look fine, I look normal but if I lift the laundry then I end up dizzy for hours and hours and hours.....the worst was when I inflated the air in my car tires...I could do it....but the dizziniess and wooziness that I had went on for the rest of the day.
I rode my bike this week! I rode it down my street and then turned around and made it halfway back! I no longer use a cane, or crutches but still can't walk in crowds worth a darn so I ask for wheelchair assistance or avoid it altogether. (want to go to Disney, but need to plan how to avoid the sun, heat and crowds) I also ask for help when walking down a slope and on uneven surfaces. Sometimes even ordinary things require an enormous amount of effort and I am fortunate that I have a few friends I can be real with, without fear of gossip or that they're going to share my story with anyone.....and that's a very good place to be.
I also want to thank my doctors because now, when I feel sick....I just send an email and POOF within 2 hours.....I get answers and treatment. I love how my world famous Lupus doctor says...."Teresa, parts of you are rocket science."
Since I haven't recovered as quickly or as throughly as I had expected/planned/hoped.....we are planning to sell our very tall 2 story house and move into a single story home. I hope it will be in my same neighborhood as we get more fog (less sun!!!!) and have cooler air and more wind here in my neighborhood. also, then I can get one of those rolling carts so I can push my laundry baskets around!!!!! At the rate I'm going with the organizing to move.....we won't have the house ready to sell for a year! LOL
So, that's a brief update. I'm celebrating my new record! What record is that???? LOL, It's been 9 months since my last hospitalization!!!!!!!! WHOOOOOOOOOeeeeeeeeeee!
Thanks you guys!!!!!!!
xo
TLC
Thursday, June 11, 2009
Wow, oh WOW!
Hi!
OK, I love this Enbrel stuff! It is helping in ways that I didn't expect! A lot of the neuro symptoms are showing amazing improvement, the joint pain and swelling are much more manageable, I'm walking more, standing more, doing more, and my spine quit hurting!
Instead of walking with a cane about .6 to 1.8 mph on a flat treadmill, I am up to a walking speed of 2.0 to 2.6 mph for up to 10 minutes. I can go to church and sit through church! I still am very much in need of more recovery but I am happy for what I've got.
We started weaning off the Prednisone and I'm looking forward to being able to lose the medication weight! Sad news is that when we lower the dose, the symptoms worsen for like 3 weeks or so....
My medications cost over $2500/month, my insurance covers a lot but not all. I endeavor to make those medications pay off!
Had my final consult with UCLA and they were nice! What? Nice? Yes, they were nice because they figured out what was going on, and they were all excited about it because it was rare. LOL.
I'm looking at Bible College but can't afford it, so I'm thinking of auditing a class to see if I can even keep up. The good news is that the audit is very cheap and I can do it on one of their online classes.
So, who wants to go on a walk with me????
Love,
T
OK, I love this Enbrel stuff! It is helping in ways that I didn't expect! A lot of the neuro symptoms are showing amazing improvement, the joint pain and swelling are much more manageable, I'm walking more, standing more, doing more, and my spine quit hurting!
Instead of walking with a cane about .6 to 1.8 mph on a flat treadmill, I am up to a walking speed of 2.0 to 2.6 mph for up to 10 minutes. I can go to church and sit through church! I still am very much in need of more recovery but I am happy for what I've got.
We started weaning off the Prednisone and I'm looking forward to being able to lose the medication weight! Sad news is that when we lower the dose, the symptoms worsen for like 3 weeks or so....
My medications cost over $2500/month, my insurance covers a lot but not all. I endeavor to make those medications pay off!
Had my final consult with UCLA and they were nice! What? Nice? Yes, they were nice because they figured out what was going on, and they were all excited about it because it was rare. LOL.
I'm looking at Bible College but can't afford it, so I'm thinking of auditing a class to see if I can even keep up. The good news is that the audit is very cheap and I can do it on one of their online classes.
So, who wants to go on a walk with me????
Love,
T
Tuesday, April 28, 2009
Cooling Down
Hi,
I'm my own personal furnace. Great in the winter, not great in the summer. Today, I was at my Rheumatologist and he saw so much joint swelling and pain in my hands that I am on a new medicine named Enbrel. I have to give myself a shot once a week. Not too bad, glad it's not into the muscle. I now take 4 immune suppressant drugs and I'm starting to get a lot better!
So, if I have to hide from germs......I just have to be very careful! No colds, flus, etc.
I am finished with my hospital stay at UCLA and now am getting more tests done at home. I am ready to be done with this UCLA team. They come into my room and announce my symptoms to me (and guess what, they were wrong). So, pray for wisdom. I described them as ninny moggins as the Fellows (special training after Residency but not a full fledged specialist) have a much higher opinion of themselves than I think is warranted. I was able to stop one medication safely while in the hospital though, so that is very good.
TTFN
I'm my own personal furnace. Great in the winter, not great in the summer. Today, I was at my Rheumatologist and he saw so much joint swelling and pain in my hands that I am on a new medicine named Enbrel. I have to give myself a shot once a week. Not too bad, glad it's not into the muscle. I now take 4 immune suppressant drugs and I'm starting to get a lot better!
So, if I have to hide from germs......I just have to be very careful! No colds, flus, etc.
I am finished with my hospital stay at UCLA and now am getting more tests done at home. I am ready to be done with this UCLA team. They come into my room and announce my symptoms to me (and guess what, they were wrong). So, pray for wisdom. I described them as ninny moggins as the Fellows (special training after Residency but not a full fledged specialist) have a much higher opinion of themselves than I think is warranted. I was able to stop one medication safely while in the hospital though, so that is very good.
TTFN
Monday, March 23, 2009
next hospital stay
Hi!
I am being admitted to UCLA Medical Center on Thursday April 2nd.
It is with the boo boo head doctor and the team. (I did report the doctor by the way, as he has not finished his specialty training and the Attendings should know about his interview skills.)
The admission will be to trigger the one last troublesome symptom to see if we can fix/cure/treat it. It is a highly specialised program of proceedures, sleep depriviation, medication manipulation and they video the whole thing to watch the reactions.
Anyway, they tell me to expect to stay there for 4 or 5 days or more. Visitors encouraged!!!!
Love,
Teresa
I am being admitted to UCLA Medical Center on Thursday April 2nd.
It is with the boo boo head doctor and the team. (I did report the doctor by the way, as he has not finished his specialty training and the Attendings should know about his interview skills.)
The admission will be to trigger the one last troublesome symptom to see if we can fix/cure/treat it. It is a highly specialised program of proceedures, sleep depriviation, medication manipulation and they video the whole thing to watch the reactions.
Anyway, they tell me to expect to stay there for 4 or 5 days or more. Visitors encouraged!!!!
Love,
Teresa
Sunday, March 15, 2009
snooze alarms
I don't think they should exist. Really, it encourages what? Procrastination? Like I'm not going to have to wake up anyway. Well, my snooze alarm broke and now my alarm broke and now my alarm goes off every 12 hours when the clock goes past the point where the alarm was before I turned it off, repeatedly. So, out came the batteries of my very pretty clock.
I had a scope of my nose/throat. YUCK, I still have bloody noses. Anyway, you're not supposed to breathe in stomach acids. It can cause swollen vocal cords, and stuff, and evidently.....your food is supposed to go down into the stomach and not get stuck mid-way. These are the things I learned from my scope. So, now I have more medicine.
I went to the YMCA today with my stand by assistant. Did a little bit on the treadmill. Couldn't handle the "incline" feature so I didnt' do it much
My granddaughter came over a bunch this weekend! What a treat to see her! Last year I didn't get to see much of her at all because of all the medical problems that kept me so confined, but now my son has been bringing her over and she and I are most happy!
I was playing a little piano today and singing along, and she said she wanted to sing with me so I taught her the song from "Oklahoma" of "Why should a woman who is healthy and strong...blubber like a baby if her man goes away....a weepin' and a walin' like he's done her wrong....that's one thing you'll never hear me say....etc." She wants me to teach her piano and singing, but I really dont' know how to teach piano.
The forearm crutches are cool, people are HIGHLY encouraging. WOW! I didn't realise there would be a difference between the wheelchair to the walker to the crutches. Children often look, I smile. Adults say things "How are you doing?" and I give them a little grin and say "I'm doing super! Thanks" and then after a little chit chat they have said things like "Hooray for you! At least you're trying!" and "Keep on moving! That's great!"
I took video of Warren and Emma jamming and dancing to "Bohemian Rhapsody" tonight, might post it on youtube when my computer is fixed. It's really funny.
I had a scope of my nose/throat. YUCK, I still have bloody noses. Anyway, you're not supposed to breathe in stomach acids. It can cause swollen vocal cords, and stuff, and evidently.....your food is supposed to go down into the stomach and not get stuck mid-way. These are the things I learned from my scope. So, now I have more medicine.
I went to the YMCA today with my stand by assistant. Did a little bit on the treadmill. Couldn't handle the "incline" feature so I didnt' do it much
My granddaughter came over a bunch this weekend! What a treat to see her! Last year I didn't get to see much of her at all because of all the medical problems that kept me so confined, but now my son has been bringing her over and she and I are most happy!
I was playing a little piano today and singing along, and she said she wanted to sing with me so I taught her the song from "Oklahoma" of "Why should a woman who is healthy and strong...blubber like a baby if her man goes away....a weepin' and a walin' like he's done her wrong....that's one thing you'll never hear me say....etc." She wants me to teach her piano and singing, but I really dont' know how to teach piano.
The forearm crutches are cool, people are HIGHLY encouraging. WOW! I didn't realise there would be a difference between the wheelchair to the walker to the crutches. Children often look, I smile. Adults say things "How are you doing?" and I give them a little grin and say "I'm doing super! Thanks" and then after a little chit chat they have said things like "Hooray for you! At least you're trying!" and "Keep on moving! That's great!"
I took video of Warren and Emma jamming and dancing to "Bohemian Rhapsody" tonight, might post it on youtube when my computer is fixed. It's really funny.
Friday, February 27, 2009
take a break
Hi,
Had an awesome weekend with Phil to celebrate his birthday and our anniversary. It was nice to get away from the routine, see new things, take my mind off these tests of endurance.
My next hospital stay has been moved up to April 2nd. This is a planned admission to find out what that one last piece of symptoms is caused by.
The doctors asked for a 4 day admission but the insurance approved only 1.
I hope it works out ok. I feel like if they can find the source of the problem, then they can treat it. Let nothing remain hidden, bring it to light!
T
Had an awesome weekend with Phil to celebrate his birthday and our anniversary. It was nice to get away from the routine, see new things, take my mind off these tests of endurance.
My next hospital stay has been moved up to April 2nd. This is a planned admission to find out what that one last piece of symptoms is caused by.
The doctors asked for a 4 day admission but the insurance approved only 1.
I hope it works out ok. I feel like if they can find the source of the problem, then they can treat it. Let nothing remain hidden, bring it to light!
T
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