Well I'm doing okay after all the running around I did. My son and I had a long drive in traffic, took 3 hours for a 1 1/2 hour drive to San Diego for the Cowboy game. All that mattered to me was that he enjoyed it since it was his first Pro football game experience for him. I'm so glad I got to share that with him, who knows if we will ever have that opportunity again since he is growing up so fast. I dream of seeing the Dallas stadium some day and so does he! The Disney watershow was fun too, I liked the dinner outside in the patio under the shade. Thanks to both Scott & Judy looking out for me! I made it through the two adventures.
As for my job, I just found out yesterday, sadly our part-time receptionist was layed off to hire another more experienced full-time person to cover if I'm ever out sick. It's like how can you feel happy or relieved you weren't the one "cut". It made me feel so sad and I cried because it was all my fault things had to change at our office because of my Lupus. Even though she tells me it was better her than me because I have two kids to support, it still was just so wrong. (Had to stop-crying again) I felt like running into the closed office door and tell my boss, just let me go, I'm the issue here! But I had to swallow my words, because it was true, I have two kids to support, one with Diabetes and the other with no Dad around. I'm all they have. It all just felt horrible, like the lamb being slaughtered right before your eyes and you do nothing. What could I do?
Tuesday, August 31, 2010
Saturday, August 21, 2010
August 21, 2010 Major Insomnia
It's now Saturday 12:23 a.m. I've just been internet surfing passing time. I'm not sleepy and it's been like this for a while now. I'm kind of avoiding crawling into my bed because I'll toss and turn, cover myself then uncover myself because I'm cold then hot. My arms and legs have to be in a full body stretch to help avoid the joint pain I'll feel as my body starts to curl back up again. Luckily I have a king sized bed so I get to be a bed hog but it doesn't last long before I'm at the edge of the bed falling off after tossing and turning like I said. By the time I do start falling asleep which almost feels like 4 or 5 in the morning, the dumb dreams start then I'm glad when my alarm gets me out of it at 6:30 a.m. I can't wait to see my doctor Sept 20th, still a ways to go until I can talk to him about sleeping pills.
Well at work yesterday I did feel a small flare come up and took my lunch break to lay down in my blanket and pillow in the empty office since I had gotten the ok from my boss. I stretched on the floor, took some deep breaths, closed my eyes, and it all really helped me to recupperate. It helped me to be able to stay at work and finish the day. So that was a good sign that this will help me continue working and not have to go home just because I didn't feel good for the short time.
I'm hoping I didn't overdo my plans this weekend having two outings planned which normally I have maybe one or NONE at all lately. A good new friend, which I have to say Thank you Jerry! gave me two tickets to see my Dallas Cowboys play here in San Diego, CA. I am from Texas, what can I say. So it will be my 16 year old son and I driving down there today. It's a two hour drive so with my son's new drivers permit he will do his practice driving on the freeway to get ready for his official drivers license test this Sept 15th. This is going to be a nice load off my shoulders so he can then drive himself to school and football practice. He is a Senior in High School so it's time. Boy, do I feel old now.
As for my other adventure for tomorrow my other good friends, Judy and Scott, invited me to join them at California Adventure to see the new World of Color show:
http://disneyland.disney.go.com/disneys-california-adventure/world-of-color/
The World of Color nighttime water spectacular weaves water, color, fire and light into a kaleidoscope of fantasy and imagination. More than 1,000 jets of water form incredible shapes in time to the music as Disney characters come to life on a shimmering veil of mist.Be immersed in this dazzling new dimension of magic at Disney's California Adventure Park.
So for me, this feels like a once in a lifetime to go and see this. I'm turning in my Annual Disney pass this year when it expires. My daughter helped buy it for my last birthday. I just don't have the energy to go anymore and also risk being in the sun too long. I used to go year's before so I'm happy I got the opportunity to enjoy it while I could. Since this show is at night, the plan is to have dinner and get reserved seating for the show, which is a great special treat for me, one not being at risk triggering my lupus in the sun, two I get to be out and with good friends which I miss, and last, I get to see this cool show!
Well wish me luck on my adventurous weekend, I've been a little afraid now to be out and about. I know it's my own anxiety, I just feel afraid of being alone driving or being too far from my home if something was to happen to me, but I really, really want to see my Cowboys and this new Disney show, so I hope God will help take care of me to enjoy it.
Well at work yesterday I did feel a small flare come up and took my lunch break to lay down in my blanket and pillow in the empty office since I had gotten the ok from my boss. I stretched on the floor, took some deep breaths, closed my eyes, and it all really helped me to recupperate. It helped me to be able to stay at work and finish the day. So that was a good sign that this will help me continue working and not have to go home just because I didn't feel good for the short time.
I'm hoping I didn't overdo my plans this weekend having two outings planned which normally I have maybe one or NONE at all lately. A good new friend, which I have to say Thank you Jerry! gave me two tickets to see my Dallas Cowboys play here in San Diego, CA. I am from Texas, what can I say. So it will be my 16 year old son and I driving down there today. It's a two hour drive so with my son's new drivers permit he will do his practice driving on the freeway to get ready for his official drivers license test this Sept 15th. This is going to be a nice load off my shoulders so he can then drive himself to school and football practice. He is a Senior in High School so it's time. Boy, do I feel old now.
As for my other adventure for tomorrow my other good friends, Judy and Scott, invited me to join them at California Adventure to see the new World of Color show:
http://disneyland.disney.go.com/disneys-california-adventure/world-of-color/
The World of Color nighttime water spectacular weaves water, color, fire and light into a kaleidoscope of fantasy and imagination. More than 1,000 jets of water form incredible shapes in time to the music as Disney characters come to life on a shimmering veil of mist.Be immersed in this dazzling new dimension of magic at Disney's California Adventure Park.
So for me, this feels like a once in a lifetime to go and see this. I'm turning in my Annual Disney pass this year when it expires. My daughter helped buy it for my last birthday. I just don't have the energy to go anymore and also risk being in the sun too long. I used to go year's before so I'm happy I got the opportunity to enjoy it while I could. Since this show is at night, the plan is to have dinner and get reserved seating for the show, which is a great special treat for me, one not being at risk triggering my lupus in the sun, two I get to be out and with good friends which I miss, and last, I get to see this cool show!
Well wish me luck on my adventurous weekend, I've been a little afraid now to be out and about. I know it's my own anxiety, I just feel afraid of being alone driving or being too far from my home if something was to happen to me, but I really, really want to see my Cowboys and this new Disney show, so I hope God will help take care of me to enjoy it.
Tuesday, August 17, 2010
August 17, 2010 Boss keeps Pushing me to Disability
Yesterday was not the greatest day thusfar, considering it has only been 8 months into taking my new meds for the Lupus and being diagnosed just last September 2009. My boss is ready to put me on my death bed. He and his human resource employee he hired to help make sure he doesn't do the wrong thing with employment laws. They both had me in the worst category of worst case employee scenarios. If there's one thing I've hated the most in all my life in working is being put in the same category as others, the flakes that call in sick to work when really they're just hung over,anyway, my point is my wonderful boss and his accomplice feel I'm putting up a "facade" that I'm not that sick, and that I really am and don't want to tell him for fear of losing my job. That he knows two other people with Lupus, one that already died from it and other not in the best situation, and that's why I'm missing so many days at work being out sick lately.
Well thank God, by my friend's advice at work, I had just tallied up all my days out being sick since January 1st and to date it has only been 3 1/2 days...I'm paid 5 days sick pay. Which I clearly stated to them both.."am I not allowed to take my sick pay benefit?" Other workerbees I have been around in my last umpteen years got paid even when they were out going to Disneyland, as one came into the office the next day wearing a souvenir which gave it away. But nope, I'm the bad seed now. I've never had a history of being out sick a lot or being a flake not even for this employer in the last three years to date, now I'm becoming "expendable" and being told I really need to look at Disability. Talk about putting me out to pasture now, I still have a functioning body at my nice age of 42, but let's not bring in the fact that I've missed 3 1/2 days of worktime all because I have Lupus.
In defending myself, I stated my body has just been getting adjusted to the new meds I just started this first of the year, I go see my doctors to make sure I'm doing well and nothing is wrong, that's why I pay my own health insurance so I can get good healthcare, I myself, am getting used to the new way of living, avoiding the sun, living like a hermit, fitting very little social events on my upcoming weekends so as not to tire myself out..isn't this enough for a compassionate person to say, I'm sorry your life has had to change because of Lupus, and it hasn't even been a year yet, but instead I get from my boss " You need to think about getting on Disability".
Oh, and because this is the second time my boss has brought this subject up so bluntly, last time he found me crying in the office because of him telling me I should start looking into Disability because it took his friend years to get the benefit, well reading and finding out SLE is on the Social Security Disabilities list of acceptable conditions is not something you get a sense of Wow that's great, I'm so happy and relieved to know I'm on that wonderful list! It is in fact, depressing to know you are one of the many poor bodies being dragged into that category..which again I'm telling you, I don't like being put in a category! so my being caught crying was another big cause for concern...my response to that was a very heartfelt, "because I am a human being, I was sad so I cried" and in turn looking directly eye to eye with my boss asked him "are you not a human being, don't you ever cry?"
Well all my defenses were up and I'm sure they realized that and seemed to back down. Normally a situation like this would cause my neck to spasm and my nerves all over my body to pulse with exploding poundings but I guess because I am not ready to throw in the towel on my own behalf, as I told them both, right now my body is still working perfectly just fine thank you but when it's starts to give out on me, you will be the first to know.
Is this even legal?? to be so harrassed by my boss when my work performance has not even affected his business?? From the beginning the whole reason for this so called meeting with me was to tell me that they were concerned that my Lupus is affecting my job now and that Lupus makes me feel tired and that makes me not want to sell and do my job. In the end, I was just being advised, they were then concerned, and that I know about the Family Medical Leave Act and what disability is if ever needed through the State Disability..again, why are we here already??
Well thank God, by my friend's advice at work, I had just tallied up all my days out being sick since January 1st and to date it has only been 3 1/2 days...I'm paid 5 days sick pay. Which I clearly stated to them both.."am I not allowed to take my sick pay benefit?" Other workerbees I have been around in my last umpteen years got paid even when they were out going to Disneyland, as one came into the office the next day wearing a souvenir which gave it away. But nope, I'm the bad seed now. I've never had a history of being out sick a lot or being a flake not even for this employer in the last three years to date, now I'm becoming "expendable" and being told I really need to look at Disability. Talk about putting me out to pasture now, I still have a functioning body at my nice age of 42, but let's not bring in the fact that I've missed 3 1/2 days of worktime all because I have Lupus.
In defending myself, I stated my body has just been getting adjusted to the new meds I just started this first of the year, I go see my doctors to make sure I'm doing well and nothing is wrong, that's why I pay my own health insurance so I can get good healthcare, I myself, am getting used to the new way of living, avoiding the sun, living like a hermit, fitting very little social events on my upcoming weekends so as not to tire myself out..isn't this enough for a compassionate person to say, I'm sorry your life has had to change because of Lupus, and it hasn't even been a year yet, but instead I get from my boss " You need to think about getting on Disability".
Oh, and because this is the second time my boss has brought this subject up so bluntly, last time he found me crying in the office because of him telling me I should start looking into Disability because it took his friend years to get the benefit, well reading and finding out SLE is on the Social Security Disabilities list of acceptable conditions is not something you get a sense of Wow that's great, I'm so happy and relieved to know I'm on that wonderful list! It is in fact, depressing to know you are one of the many poor bodies being dragged into that category..which again I'm telling you, I don't like being put in a category! so my being caught crying was another big cause for concern...my response to that was a very heartfelt, "because I am a human being, I was sad so I cried" and in turn looking directly eye to eye with my boss asked him "are you not a human being, don't you ever cry?"
Well all my defenses were up and I'm sure they realized that and seemed to back down. Normally a situation like this would cause my neck to spasm and my nerves all over my body to pulse with exploding poundings but I guess because I am not ready to throw in the towel on my own behalf, as I told them both, right now my body is still working perfectly just fine thank you but when it's starts to give out on me, you will be the first to know.
Is this even legal?? to be so harrassed by my boss when my work performance has not even affected his business?? From the beginning the whole reason for this so called meeting with me was to tell me that they were concerned that my Lupus is affecting my job now and that Lupus makes me feel tired and that makes me not want to sell and do my job. In the end, I was just being advised, they were then concerned, and that I know about the Family Medical Leave Act and what disability is if ever needed through the State Disability..again, why are we here already??
Monday, August 9, 2010
August 9, 2010 New Pain Med/Insomnia
Now that I feel better, I don't have much to complain about. When I feel bad I feel like I should get in here and write about it because then the emotions and feelings are real when they are happening. I wish I had a personal assistant that I could just tell to take a note and to also help remind me to talk to my doctor about it before I forget. I'm so forgetful about everything nowadays, I know I will forget what I just went through last week and by then I don't want to even bother to bring it up anymore because it's now behind me and I'd like to keep it that way. It's like now you're good, keep the positive momentum going.
But I know I need to now talk to him that my other pain med is no longer working 24 hours like it used to. I don't want to head towards another medication, I want to just keep the three meds I am taking now PLEASE!!
I ended up last week going to see my regular family doctor since my Rheumy was out on vacation and he offered to put me on something "stronger". He said it was less potent than Vicodin, called Tramadol (Ultram) low dose 50 mg. Big mistake, I was in an out of a mind daze and extreme nausea for hours and even though it did help numb my major back pain, it's not worth the side effects. I've also had really bad insomnia this past week, I think I've only slept a total of 11 hours these past 4 days. I can't get a deep sleep. My brain just doesn't shut off and keeps going and going no matter if I closed my eyes and toss and turn to get some sleep..just not happening.
So now I've got two more issues to talk to my Rheumy in September, is there something stronger than Naproxen 500 mg for my back pain and for the joint pain causing the numbness in my hands and legs again. What about sleeping pills? I don't want to add more to my list but not sleeping 4 days, and if more adding, it's going to catch up with me and I don't think in a very good way. I've also lost my appetite here and there which is okay as far as the weight department goes, but I know it's not normal or healthy for me to be that way.
The positive things I've done to try to help myself, not sure if it works or not but thought it couldn't hurt. I finally bought me a crossword puzzle book, to help my brain figure things out, these used to be so easy for me before. Now,...not so easy. I gave up on the Sudoku I also bought, my brain just doesn't get it..I was that 4.0 student with honors,I absorbed things like a sponge, now it doesn't feel that way anymore. I also started taking some vitamins, even though my Rheumy hasn't talked to me about taking any. I just thought it couldn't hurt, but another thing to talk to him about I guess when I see him just to make sure. I read so much information on the Internet, from what you hear on the news and from friends and family telling you so much stuff, it's confusing on what is or isn't good for you anymore.
Missed another day and 1/2 work last week due to major back pain (couldn't even walk, sit or drive) then had to recover from the new pain meds the next day to get it out of my system. I thought it was my right kidney that was causing the pain, doctor checked urine sample, said not my kidneys, which is still the best thing to hear.
But I know I need to now talk to him that my other pain med is no longer working 24 hours like it used to. I don't want to head towards another medication, I want to just keep the three meds I am taking now PLEASE!!
I ended up last week going to see my regular family doctor since my Rheumy was out on vacation and he offered to put me on something "stronger". He said it was less potent than Vicodin, called Tramadol (Ultram) low dose 50 mg. Big mistake, I was in an out of a mind daze and extreme nausea for hours and even though it did help numb my major back pain, it's not worth the side effects. I've also had really bad insomnia this past week, I think I've only slept a total of 11 hours these past 4 days. I can't get a deep sleep. My brain just doesn't shut off and keeps going and going no matter if I closed my eyes and toss and turn to get some sleep..just not happening.
So now I've got two more issues to talk to my Rheumy in September, is there something stronger than Naproxen 500 mg for my back pain and for the joint pain causing the numbness in my hands and legs again. What about sleeping pills? I don't want to add more to my list but not sleeping 4 days, and if more adding, it's going to catch up with me and I don't think in a very good way. I've also lost my appetite here and there which is okay as far as the weight department goes, but I know it's not normal or healthy for me to be that way.
The positive things I've done to try to help myself, not sure if it works or not but thought it couldn't hurt. I finally bought me a crossword puzzle book, to help my brain figure things out, these used to be so easy for me before. Now,...not so easy. I gave up on the Sudoku I also bought, my brain just doesn't get it..I was that 4.0 student with honors,I absorbed things like a sponge, now it doesn't feel that way anymore. I also started taking some vitamins, even though my Rheumy hasn't talked to me about taking any. I just thought it couldn't hurt, but another thing to talk to him about I guess when I see him just to make sure. I read so much information on the Internet, from what you hear on the news and from friends and family telling you so much stuff, it's confusing on what is or isn't good for you anymore.
Missed another day and 1/2 work last week due to major back pain (couldn't even walk, sit or drive) then had to recover from the new pain meds the next day to get it out of my system. I thought it was my right kidney that was causing the pain, doctor checked urine sample, said not my kidneys, which is still the best thing to hear.
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