I'm dead tired right now and it's only 8 p.m. I have not had any flares since my last blog but boy I have had major stress in my life these past few weeks. I don't want my blog to be my "personal journal" because I mainly want this blog to help me and others understand how having Lupus from day one to...,whenever I stop writing my blog, has affected me and what are some of the symptoms to expect or the medications that come with it change or not, as my body adjusts throughtout the years.
I have been feeling tired and my back hurts a lot again. I get really bad chills and I've been getting dry eyes again, similar to allergies which I've never had in all my life, now irritate a lot while I'm at work. I've got a constant dry cough, not sure if this is because of the cold weather. This house is pretty cold since it is a raised foundation and there is no carpet, all hardwood. I still get the random chest pains by my heart but I've learned now not to run to take Naproxen unless desperately needed.
I'm worried about my move back home to Texas next year in July 2011. So in a sense, I have created my own stress. But because I have always been a planner, I like to prepare for the changes way ahead.
First , my kids, they want to stay here in California, which as any mother would tell anyone, it breaks my heart, but they are my little birdies that someday I knew would want to leave the nest. I just can't leave without them having a plan, where they will live, eat, put gas in their car?? all those expenses, and what if something happens, we have no family here except my ex-husband's who now are probably on his side now and we have drifted apart this past year.
My second and most important concern, is my medical insurance that I pay for myself and my daughter who has Type 1 Diabetes. What are the choices??? my niece who is a nurse in Texas tells me either you are on welfare and you can't live with family without disclosing their income because the counts as well, I pay for health ins which we don't qualify for on the Obama plan until 2014, or my only hope is to get a job that offers health ins benefits.
Ugggggh! so much burden on my shoulders! Luckily I have family that will help when we get there until I can figure out what to do next.
I could stay here in California but my job is stressful, it has sales quotas, which in today's market, nobody wants to buy! Also if I get sick I don't have enough sick days to make up for the lost income being out and my child support ends next November 2011. So it all is coming down on me next year which I want to head back home to have some family support not only financially but emotionally. I'm pretty lonely now, my kids go out with their friends so I'm alone here at home. I go out too once in awhile but I don't always have the energy or the money to go out.
As for my Lupus, nothing much has changed as far as meds, all the same. I just take them all the time like I'm supposed to. I have started walking my dog Shadow a few times around my new neighborhood since I gave up my house this past April to move to this rental house. I don't know the area too well to trust that I'm safe if something happens to me while walking around on my own.
A good thing did change though, I stopped having my bad long dreams finally. I feel it is because I decided to only drink two things, water and milk. I don't drink any soda (used to drink diet coke) and no alcohol period! So my brain seems to like the change and I have been sleeping better.
ok well I'm tired and heading to bed now
Wednesday, December 1, 2010
Thursday, October 14, 2010
October 14, 2010- In Remission I think??
I haven't written in here for quite a while because I think, so far, that I am in remission. I barely break out in hives as much so haven't had to take any Benedryl at all for the past hmm... two months I think or whenever was my last blog. I still have the joint stiffness and toss and turn at night. I can sleep now, not total insomnia, but I still have those wonderful long movie dreams all through the night because I'll wake up from the stiffness then go back to sleep to start another dream. My hands still close up in a tight fist on their own so my wrist and fingers hurt. I get really hot all of a sudden, like fevers, sometimes out of nowhere. The pain on my chest has changed to a different spot near my left side of my heart but it's still the same sharp pain inside. I've just learned to deal with it when it happens.
I think I'm in remission because I've avoided having any stress in my life, but by doing that, I hardly go out with my friends, I don't date at all by avoiding to get a boyfriend only because I'm very emotional about stuff, so best for his sake, not to be around me! and of course, my least favorite part, avoiding being out in the sun. Living in sunny California is really hard because you want to ride your bike, walk your dog at the beach, you want to be at the county fair and walk around and just be alive. I know for a fact now that if I am in the sun for a long time and/or I have stress I get a flare. I provoke it. Soooo, this is why I am in remission.
I did go see my Rheume this past September. Well, what's to say, from my 1st visit in July he was so thorough, concerned, a good listener. This 2nd visit was not so much the same. You can tell when your doctor hasn't read your chart and they say, "so where are we at?" Well Duh? you had me do bloodwork so I think we should discuss the results maybe? would be nice to know. So according to him all is good, which I felt was true as far as I could tell on my own. He didn't really ask me what I felt lately so I said I had written a list, which he barely even seemed to absorb. My list had like 23 or so items to discuss. I think because my bloodwork was showing I was "normal" my symptoms didn't matter much, so I just said straight out, I guess this is all part of having Lupus. So the doc now is sending me for my next follow-up with a "Physician's Assistant" at a different location so that just tells me I'm not in the top 5 of being in that bad shape. I took that as a good sign. I guess I could have taken it a different way, if I was a pessimist, and thought he made me feel not that important to keep me under his personal care as his patient, but sending me off to the lower key assistant actually made me feel okay. I'm okay..... get that through my thick head!
I did get the sleeping pills prescription out of him as he was running out the door, 5 mg Ambian I think it was, but my friends talked me out of taking it, said I didn't need any more junk pills destroying my body, so I didn't get the med. They suggested I stay up watching TV when I can't sleep, which I never thought of, really I didn't, so that has worked, but now I don't even try to sleep because I'm addicted to shows like Snapped, Bones and House re-runs, and HGTV and..well the list goes on. I'm sure you fellow insomniacs know which ones I'm talking about.
Also, as Doc is running out the door, I asked shouldn't I get my eyes checked? After a year aren't I supposed to since I'm taking Plaquenil? Which he realizes, yes, that would be a good idea to check them. Only later when I get my referral it's to see an Optometrist. I don't know about you all but I don't know all the Doctor titles but when I called to make my appointment with the Optometrist I asked if they were going to dilate my eyes so I'd make sure I had a ride home and not drive myself, they tell me no, they're only going to check to see if I need glasses. Well duh?, I already wear glasses so this does me no good for my Lupus annual eye checkup. So I pull out my old business card from my last year's eye exam and it states the doctor was an Ophthalmologist. So I call my Rheume Doc and tell the nurse I think I'm being sent to the wrong eye doctor. I explain to her to tell my Doc, I already wear glasses, I really don't think I need to see an Optometrist, so reluctantly she tells me she will call the Doc and ask him. So the next day, I'm told I'm getting a Referral to an Ophthalmologist. So as I have read other Lupus blogs say, us patients really need to stand up for ourselves and say what we have to say for our own well being. Doctors can make mistakes, I'm sure they don't like to be corrected, but it's your body and your insurance. Don't be afraid to speak out for yourself to get the care you need. It took me two years, but I finally got my own Primary Family doctor to believe me when I said I need the 5 day Z-Pack antibiotic when I had bronchitus two weeks ago. I told him frankly, I'll come in to see you, you give me Amoxicillian and two days later I will be at the Emergency room at midnight fighting to breathe, so why don't you just do me the big favor and prescribe me what I really need now. So he has now for the past two years. I like my Primary doctor, he believes me now, he's the one that I kept insisting something was wrong with me since last year June 2009 until he diagnosed me himself by November 2009 that I probably had Lupus. So he believes me a lot more now when I say, I know what's wrong with me Doc.
So as for my work, things are okay, I'm not stressed. I just go to work and do my job. My boss has backed off now that he hired the "back up" lady even though she bluntly told me from day one, that she was not hired to be the back up. Okay that's fine. I haven't missed work being out sick so that has been a good sign too, about the remission part, not the new lady my boss hired.
My plan now is to maybe move back home now to my hometown in Texas. My son is going to graduate high school next year and once he picks out a college to go to whether here in California or if he wants to go back home with me and go to college over there will be figured out by next July. I've been gone over 18 years from my hometown. I have no family here except for my kids. I only moved to California when I was married as my ex-husband is from here. I only stayed for my son to be around his Dad after our divorce and for my daughter to finish college, avoiding pregnancy issues or my son getting in the bad crowd if he couldn't make new friends had we moved back to Texas while he was still a teenager. All the responsibilities I have put on my own shoulders to raise my two kids without their Dad's being around but they turned out great and I'm proud. But now Mama is dead tired and beat. I want to get a simple job, a small little place for myself and my dog, hang out with my sister and my brothers back home. I miss them and I have been gone for a long time. Later there will be grandkids so I'll need some rest to recupperate and get ready for the next cycle in my life...being a Grandma. Boy, I'm old, but you know what, I'm really looking forward to it! (just don't tell my daughter)
I think I'm in remission because I've avoided having any stress in my life, but by doing that, I hardly go out with my friends, I don't date at all by avoiding to get a boyfriend only because I'm very emotional about stuff, so best for his sake, not to be around me! and of course, my least favorite part, avoiding being out in the sun. Living in sunny California is really hard because you want to ride your bike, walk your dog at the beach, you want to be at the county fair and walk around and just be alive. I know for a fact now that if I am in the sun for a long time and/or I have stress I get a flare. I provoke it. Soooo, this is why I am in remission.
I did go see my Rheume this past September. Well, what's to say, from my 1st visit in July he was so thorough, concerned, a good listener. This 2nd visit was not so much the same. You can tell when your doctor hasn't read your chart and they say, "so where are we at?" Well Duh? you had me do bloodwork so I think we should discuss the results maybe? would be nice to know. So according to him all is good, which I felt was true as far as I could tell on my own. He didn't really ask me what I felt lately so I said I had written a list, which he barely even seemed to absorb. My list had like 23 or so items to discuss. I think because my bloodwork was showing I was "normal" my symptoms didn't matter much, so I just said straight out, I guess this is all part of having Lupus. So the doc now is sending me for my next follow-up with a "Physician's Assistant" at a different location so that just tells me I'm not in the top 5 of being in that bad shape. I took that as a good sign. I guess I could have taken it a different way, if I was a pessimist, and thought he made me feel not that important to keep me under his personal care as his patient, but sending me off to the lower key assistant actually made me feel okay. I'm okay..... get that through my thick head!
I did get the sleeping pills prescription out of him as he was running out the door, 5 mg Ambian I think it was, but my friends talked me out of taking it, said I didn't need any more junk pills destroying my body, so I didn't get the med. They suggested I stay up watching TV when I can't sleep, which I never thought of, really I didn't, so that has worked, but now I don't even try to sleep because I'm addicted to shows like Snapped, Bones and House re-runs, and HGTV and..well the list goes on. I'm sure you fellow insomniacs know which ones I'm talking about.
Also, as Doc is running out the door, I asked shouldn't I get my eyes checked? After a year aren't I supposed to since I'm taking Plaquenil? Which he realizes, yes, that would be a good idea to check them. Only later when I get my referral it's to see an Optometrist. I don't know about you all but I don't know all the Doctor titles but when I called to make my appointment with the Optometrist I asked if they were going to dilate my eyes so I'd make sure I had a ride home and not drive myself, they tell me no, they're only going to check to see if I need glasses. Well duh?, I already wear glasses so this does me no good for my Lupus annual eye checkup. So I pull out my old business card from my last year's eye exam and it states the doctor was an Ophthalmologist. So I call my Rheume Doc and tell the nurse I think I'm being sent to the wrong eye doctor. I explain to her to tell my Doc, I already wear glasses, I really don't think I need to see an Optometrist, so reluctantly she tells me she will call the Doc and ask him. So the next day, I'm told I'm getting a Referral to an Ophthalmologist. So as I have read other Lupus blogs say, us patients really need to stand up for ourselves and say what we have to say for our own well being. Doctors can make mistakes, I'm sure they don't like to be corrected, but it's your body and your insurance. Don't be afraid to speak out for yourself to get the care you need. It took me two years, but I finally got my own Primary Family doctor to believe me when I said I need the 5 day Z-Pack antibiotic when I had bronchitus two weeks ago. I told him frankly, I'll come in to see you, you give me Amoxicillian and two days later I will be at the Emergency room at midnight fighting to breathe, so why don't you just do me the big favor and prescribe me what I really need now. So he has now for the past two years. I like my Primary doctor, he believes me now, he's the one that I kept insisting something was wrong with me since last year June 2009 until he diagnosed me himself by November 2009 that I probably had Lupus. So he believes me a lot more now when I say, I know what's wrong with me Doc.
So as for my work, things are okay, I'm not stressed. I just go to work and do my job. My boss has backed off now that he hired the "back up" lady even though she bluntly told me from day one, that she was not hired to be the back up. Okay that's fine. I haven't missed work being out sick so that has been a good sign too, about the remission part, not the new lady my boss hired.
My plan now is to maybe move back home now to my hometown in Texas. My son is going to graduate high school next year and once he picks out a college to go to whether here in California or if he wants to go back home with me and go to college over there will be figured out by next July. I've been gone over 18 years from my hometown. I have no family here except for my kids. I only moved to California when I was married as my ex-husband is from here. I only stayed for my son to be around his Dad after our divorce and for my daughter to finish college, avoiding pregnancy issues or my son getting in the bad crowd if he couldn't make new friends had we moved back to Texas while he was still a teenager. All the responsibilities I have put on my own shoulders to raise my two kids without their Dad's being around but they turned out great and I'm proud. But now Mama is dead tired and beat. I want to get a simple job, a small little place for myself and my dog, hang out with my sister and my brothers back home. I miss them and I have been gone for a long time. Later there will be grandkids so I'll need some rest to recupperate and get ready for the next cycle in my life...being a Grandma. Boy, I'm old, but you know what, I'm really looking forward to it! (just don't tell my daughter)
Tuesday, August 31, 2010
August 31, 2010- My Job is Safe
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?
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?
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.
Tuesday, July 27, 2010
July 27, 2010 Missing Work and Disability
I think it is July 27th, I don't remember. I hadn't written anything because I was holding off until I felt well enough to type in here but every day seems to change one good day I accomplish things I need to get done around the house, then the next day I don't feel so great. I read someone's blog that dismayed me a little, about not wanting to read the whining, complaining about aches and pains type of blogs about SLE but this is my blog, my own outlet to what I feel, just like I used to write in my paper journals.
Well where I am at now, I don't know, I have had these weird sudden symptoms, I don't think they are considered a flare because they go away after I rest. I just get this overwhelming feeling that I just don't feel good. I don't get nausea or dizzy or feel faint, it's hard to describe, I just feel sick all of a sudden and feel no strength or energy, not even to lift a pen or push a button I can't get my brain to tell my hand movement. Then the feeling comes back where I can and I move around just enough to get me home from work. Which now I realize, I shouldn't be doing. I have no where to lay down at work and I can't lay in my car because it is hot and that makes me feel sick too.
I just found that out the hard way couple of weeks ago, I was waiting in my car for my son to get out of his football practice and I didn't think I was affected by the sunlight because I am dark-skinned but I was wrong, just being in the heat raised my temperature and I got this overwhelming feeling of not feeling too good. Luckily my son came out of his football practice in time to drive us home. I just didn't understand what had suddenly happened. It was another wake up call that stuff is still happening. I'm not too aware of it all yet or exposed to what is to come.
I still break out in hives, take Benadryl when I can't stand the itching anymore, I get fevers especially at night, I get the "fog" and forget things, my lower back spine hurts more especially in the mornings when I try to get up, I don't sleep all night anymore because I'm tossing and turning again from the pain in my arms and hands when I lay on them for awhile. I still keep having the weird long, long dreams. At least now they are not nightmares with blood and gorey stuff. They just go on and on like a movie. I wake up feeling tired and restless. But I'm not kidding, every single night, I have these stupid dreams.
I left my work a couple of times last week without pay and that hurts me a lot financially and it just adds to my stress. I just have no control of the feeling that just happens I don't feel good and just need to lie down. My co-worker suggested I lay down in the empty office and just bring a sleeping bag and pillow and told me I shouldn't be driving in that condition either. All true, I just didn't want to upset my boss or risk loosing my job when this happens all of a sudden.
Well I finally told my Boss yesterday if it was okay to have a blanket and pillow to lie down only when I really needed and using either my breaks, lunch, or I'd clock out to see if I can feel better to keep working for the day, he said that he didn't have much of a choice and that I should start looking at Disability.
Today I just started crying at work when I searched about Disability and it was overwhelming to read, even though SLE is on the list of disabilities, it depressed me to think I was getting there at age 42.
Social Security Disability Listings of Impairments:General.Systemic lupus erythematosus (SLE) is a chronic inflammatory disease that can affect any organ or body system. It is frequently, but not always, accompanied by constitutional symptoms or signs (severe fatigue, fever, malaise, involuntary weight loss). Major organ or body system involvement can include: Respiratory (pleuritis, pneumonitis), cardiovascular (endocarditis, myocarditis, pericarditis, vasculitis), renal (glomerulonephritis), hematologic (anemia, leukopenia, thrombocytopenia), skin (photosensitivity), neurologic (seizures), mental (anxiety, fluctuating cognition (“lupus fog”), mood disorders, organic brain syndrome, psychosis), or immune system disorders (inflammatory arthritis). Immunologically, there is an array of circulating serum autoantibodies and pro- and anti-coagulant proteins that may occur in a highly variable pattern.
Reading about All these symptoms, diagnoses and stuff it said, just seemed like so much. I've read other people's blogs and they have all seem to have several of these symptoms, it just made me think, now which one is next for me to go through.
Well where I am at now, I don't know, I have had these weird sudden symptoms, I don't think they are considered a flare because they go away after I rest. I just get this overwhelming feeling that I just don't feel good. I don't get nausea or dizzy or feel faint, it's hard to describe, I just feel sick all of a sudden and feel no strength or energy, not even to lift a pen or push a button I can't get my brain to tell my hand movement. Then the feeling comes back where I can and I move around just enough to get me home from work. Which now I realize, I shouldn't be doing. I have no where to lay down at work and I can't lay in my car because it is hot and that makes me feel sick too.
I just found that out the hard way couple of weeks ago, I was waiting in my car for my son to get out of his football practice and I didn't think I was affected by the sunlight because I am dark-skinned but I was wrong, just being in the heat raised my temperature and I got this overwhelming feeling of not feeling too good. Luckily my son came out of his football practice in time to drive us home. I just didn't understand what had suddenly happened. It was another wake up call that stuff is still happening. I'm not too aware of it all yet or exposed to what is to come.
I still break out in hives, take Benadryl when I can't stand the itching anymore, I get fevers especially at night, I get the "fog" and forget things, my lower back spine hurts more especially in the mornings when I try to get up, I don't sleep all night anymore because I'm tossing and turning again from the pain in my arms and hands when I lay on them for awhile. I still keep having the weird long, long dreams. At least now they are not nightmares with blood and gorey stuff. They just go on and on like a movie. I wake up feeling tired and restless. But I'm not kidding, every single night, I have these stupid dreams.
I left my work a couple of times last week without pay and that hurts me a lot financially and it just adds to my stress. I just have no control of the feeling that just happens I don't feel good and just need to lie down. My co-worker suggested I lay down in the empty office and just bring a sleeping bag and pillow and told me I shouldn't be driving in that condition either. All true, I just didn't want to upset my boss or risk loosing my job when this happens all of a sudden.
Well I finally told my Boss yesterday if it was okay to have a blanket and pillow to lie down only when I really needed and using either my breaks, lunch, or I'd clock out to see if I can feel better to keep working for the day, he said that he didn't have much of a choice and that I should start looking at Disability.
Today I just started crying at work when I searched about Disability and it was overwhelming to read, even though SLE is on the list of disabilities, it depressed me to think I was getting there at age 42.
Social Security Disability Listings of Impairments:General.Systemic lupus erythematosus (SLE) is a chronic inflammatory disease that can affect any organ or body system. It is frequently, but not always, accompanied by constitutional symptoms or signs (severe fatigue, fever, malaise, involuntary weight loss). Major organ or body system involvement can include: Respiratory (pleuritis, pneumonitis), cardiovascular (endocarditis, myocarditis, pericarditis, vasculitis), renal (glomerulonephritis), hematologic (anemia, leukopenia, thrombocytopenia), skin (photosensitivity), neurologic (seizures), mental (anxiety, fluctuating cognition (“lupus fog”), mood disorders, organic brain syndrome, psychosis), or immune system disorders (inflammatory arthritis). Immunologically, there is an array of circulating serum autoantibodies and pro- and anti-coagulant proteins that may occur in a highly variable pattern.
Reading about All these symptoms, diagnoses and stuff it said, just seemed like so much. I've read other people's blogs and they have all seem to have several of these symptoms, it just made me think, now which one is next for me to go through.
Monday, July 19, 2010
June 13, 2010 old paper journals
I haven't written in over a month. Well I saw my new Doctor again and he confirmed a second time, after eleven blood tests, that I do have Lupus. So far I have had no major flares, just chest pain by my heart once in a while. I still get bad back pain and headaches but I now take the Naproxen 500 mg when I need to and the pain goes away. Right now I don't have the pain in my hands. I get dry eyes sometimes so I put eye drops that help moisturize them. I just hate my stress at work on sales quotas that frustrates me. Otherwise I could be happy and more relaxed. I hope to lose some weight by exercising again. I've started to use my treadmill for thirty minutes, other days I use a low impact aerobics or resistance band video workout. I feel it helps my joints to stretch out, it helps my stress, and I sleep a lot better at night. I know the difference now, from a flare, and now that I am in remission.
I have been able to hang out now with my friends again and go out. Before I had no strength or energy to go anywhere much less stay up late. I still break out in hives more on my hands and back legs and arms, I get blisters and I hate having to take the Benadryl again because it just puts me to sleep and it's hard for me to come out of the daze in the morning. I wake up having weird dreams than go back to sleep to only wake up from another weird dream. I don't have a loss of appetite or nausea anymore. I'll get random headaches and then sinus pressure on my nose so I take the Naproxen and feel better.
I finally figured out what I thought was a loss in memory when I forget things, what I'm saying or where I'm going, they call it "brain fog" which is what makes more sense to me now. Because I don't really forget, I'll remember a few seconds later but by then I've already driven the wrong direction, or said the wrong word, so yes, having "brain fog" is what it is, a cloudy thought that later becomes clear and your focused again.
I have been able to hang out now with my friends again and go out. Before I had no strength or energy to go anywhere much less stay up late. I still break out in hives more on my hands and back legs and arms, I get blisters and I hate having to take the Benadryl again because it just puts me to sleep and it's hard for me to come out of the daze in the morning. I wake up having weird dreams than go back to sleep to only wake up from another weird dream. I don't have a loss of appetite or nausea anymore. I'll get random headaches and then sinus pressure on my nose so I take the Naproxen and feel better.
I finally figured out what I thought was a loss in memory when I forget things, what I'm saying or where I'm going, they call it "brain fog" which is what makes more sense to me now. Because I don't really forget, I'll remember a few seconds later but by then I've already driven the wrong direction, or said the wrong word, so yes, having "brain fog" is what it is, a cloudy thought that later becomes clear and your focused again.
May11 and May 16, 2010 old paper journals
May 11, 2010-Last time I wrote in my notebook was 3/13/10, time flys. I wasn't writing for awhile I haven't had any flares. I'm not as tired or sleeping a lot as much. I still get itchy but not hives like before so I don't take the Benadryl anymore. I'm trying to be active again. Now that we have moved to a rental house. I had to let my house go in order to keep our health insurance. This helped alot in lowering my stress. We are all happy here and that's all that matters to me. I do worry about 1 1/2 years from now when the child support ends how we will make ends meet but I hope all will work out that by then my daughter gets her Masters Degree, she will get a better paying job with medical benefits. She has Diabetes Type 1 and needs two types of insulin, humalog & lantus, syringes, test strips, and test needles. She has financial aid and student loans helping to get her through college and she works three jobs to help us make ends meet. I don't know my son's future once he graduates high school next year, we will all figure it out by then I guess.
I saw my new Rheumatologist, Dr. M. today. He was such a good doctor and asked me lots of questions and took lots of notes. A very big difference from my other Dr. D. who only talked to me like three minutes on my three visits with her. I still remember my first visit, she comes in tells me, You have Lupus, we'll start you on Plaquenil after an eye exam, see you in a month. No info no brochures, no questions about my symptoms. I'm so glad I changed doctors!
So for now my new doctor wants to do a full blood work testing, a test on my heart, echocardium sonogram of my heart. He is a litte concerned about why I have the chest pain. For now he wants me to stop taking the Naproxen (pain medication) to see if I still feel joint pain and if it is worse than before I started taking it. I usually take my pain medication twice a day at 7am and 8 pm.
I didn't take the 8pm pill it is now 10:45pm and I feel lower back pain. I was lying on my stomach earlier writing (doing my bills) and I had a lot of pain in my lower back. I could not turn myself over from so much pain. I couldn't even call out to my son to come help me from the pain. Finally I turned over on my back but I had no strength and felt a sharp pain in my lower back. I waited and little by little I got up. I want to try one day 24 hours just to see how I do without the pain medication. I am curious myself where my body is at. I also have that dry cough again and the sharp chest pain. I want to see what happens just so I can know. The Doctor thought it was rare and too soon for me to have been diagnosed with Lupus so quickly. He wants to make sure that is what I have. If I feel pain (more) than what I have, he wants to put me on steroids, which I don't want or he can tell me I don't have Lupus but something else. We will see with the blood test.
May 16, 2010- Today has been an odd day. I woke up early kind of like in a daze like sleep walking, it's 7am. I was so exhausted yet I was able to get up early I had my morning coffee and I wanted to sit outside in the backyard patio steps and just be by myself in thought and sounds. Hearing the birds chirping, I played ball with my dog Shadow, she makes me laugh. I smelled my pretty roses. I came inside and decided to watch a movie, it was about Dr. Kivorkian, the suicide doctor. Not the best movie to see I guess when you have Lupus. It's an interesting subject though. At first seeing the beginning of the movie, it made lots of sense to me by ending someone's suffering with compassion, someone that wants to die. If terminal and there is no hope for them. As for me, I know I have some sort of illness whether it is Lupus or not I won't know for sure until my new doctor tells me different. I am off my pain pills and even though there has been a few instances when I want to take them, like now, my lower back spine is hurting or I've had some bad headaches, I choose not to take the pain killers (Naproxen). I like the free will I have to say no yet I allow myself to suffer. Why?? because I am testing my own body on how much pain I can endure, not as a punishment or sacrifice thing, but to show myself, if and when it does get worse, what could be the maximum I can take. I feel my body is just that, a body, parts, organs, flesh, it should not have any bearing on my soul. I don't feel I have to suffer for God to see my soul do I?
Today I felt some shortness of breath, my dry cough, my eyes hurt so I'll need to close them pretty soon, but I don't feel tired or exhausted, just struggling to work at breathing like my lungs are not working too good right now. But back to my thoughts about Dr. Kivorkian and my opinion if I was to get to the point of wanting to end my life, I feel my faith in God would have to step in and say no. We as human beings cannot play God. Our life is not at our own will. The world could be in a better place if we all took some time and just stopped and listened. We all are born with a body, a heart, a soul, a brain, it is what we choose to do with all of it that could make a difference. It can make a difference to someone else. If we have money are we going to hoard it and save it for when and if we get to be old when there is someone who could use your help now? If we have hands and legs, are we not going to lend a helping hand to help lift someone else off the ground that is truly down? Doesn't our heart feel the pain or anquish of someone else's? Yet we don't even try to reach out to them. Our soul is going to be the only part of our body that will be going to heaven, you should ask yourself sometime, if you think you are going to heaven, "have you done more for others?"
I saw my new Rheumatologist, Dr. M. today. He was such a good doctor and asked me lots of questions and took lots of notes. A very big difference from my other Dr. D. who only talked to me like three minutes on my three visits with her. I still remember my first visit, she comes in tells me, You have Lupus, we'll start you on Plaquenil after an eye exam, see you in a month. No info no brochures, no questions about my symptoms. I'm so glad I changed doctors!
So for now my new doctor wants to do a full blood work testing, a test on my heart, echocardium sonogram of my heart. He is a litte concerned about why I have the chest pain. For now he wants me to stop taking the Naproxen (pain medication) to see if I still feel joint pain and if it is worse than before I started taking it. I usually take my pain medication twice a day at 7am and 8 pm.
I didn't take the 8pm pill it is now 10:45pm and I feel lower back pain. I was lying on my stomach earlier writing (doing my bills) and I had a lot of pain in my lower back. I could not turn myself over from so much pain. I couldn't even call out to my son to come help me from the pain. Finally I turned over on my back but I had no strength and felt a sharp pain in my lower back. I waited and little by little I got up. I want to try one day 24 hours just to see how I do without the pain medication. I am curious myself where my body is at. I also have that dry cough again and the sharp chest pain. I want to see what happens just so I can know. The Doctor thought it was rare and too soon for me to have been diagnosed with Lupus so quickly. He wants to make sure that is what I have. If I feel pain (more) than what I have, he wants to put me on steroids, which I don't want or he can tell me I don't have Lupus but something else. We will see with the blood test.
May 16, 2010- Today has been an odd day. I woke up early kind of like in a daze like sleep walking, it's 7am. I was so exhausted yet I was able to get up early I had my morning coffee and I wanted to sit outside in the backyard patio steps and just be by myself in thought and sounds. Hearing the birds chirping, I played ball with my dog Shadow, she makes me laugh. I smelled my pretty roses. I came inside and decided to watch a movie, it was about Dr. Kivorkian, the suicide doctor. Not the best movie to see I guess when you have Lupus. It's an interesting subject though. At first seeing the beginning of the movie, it made lots of sense to me by ending someone's suffering with compassion, someone that wants to die. If terminal and there is no hope for them. As for me, I know I have some sort of illness whether it is Lupus or not I won't know for sure until my new doctor tells me different. I am off my pain pills and even though there has been a few instances when I want to take them, like now, my lower back spine is hurting or I've had some bad headaches, I choose not to take the pain killers (Naproxen). I like the free will I have to say no yet I allow myself to suffer. Why?? because I am testing my own body on how much pain I can endure, not as a punishment or sacrifice thing, but to show myself, if and when it does get worse, what could be the maximum I can take. I feel my body is just that, a body, parts, organs, flesh, it should not have any bearing on my soul. I don't feel I have to suffer for God to see my soul do I?
Today I felt some shortness of breath, my dry cough, my eyes hurt so I'll need to close them pretty soon, but I don't feel tired or exhausted, just struggling to work at breathing like my lungs are not working too good right now. But back to my thoughts about Dr. Kivorkian and my opinion if I was to get to the point of wanting to end my life, I feel my faith in God would have to step in and say no. We as human beings cannot play God. Our life is not at our own will. The world could be in a better place if we all took some time and just stopped and listened. We all are born with a body, a heart, a soul, a brain, it is what we choose to do with all of it that could make a difference. It can make a difference to someone else. If we have money are we going to hoard it and save it for when and if we get to be old when there is someone who could use your help now? If we have hands and legs, are we not going to lend a helping hand to help lift someone else off the ground that is truly down? Doesn't our heart feel the pain or anquish of someone else's? Yet we don't even try to reach out to them. Our soul is going to be the only part of our body that will be going to heaven, you should ask yourself sometime, if you think you are going to heaven, "have you done more for others?"
March 1 and March 13, 2010 old paper journal
Real quick note going to bed now. I'm really, really tired doing my taxes, my budget, planning our move. So far everything is working out. I'm not going to Hawaii on vacation guess it's for the best until all is done. I feel okay just tired and my eyes hurt, got eye drops to help but just know they get tired easier from working on a computer at my job. My hand hurts writing so I know my writing is getting sloppier guess I should type instead of writing this journal. Going to bed tired.
March 13,2010-almost time to move in a couple of weeks. Makes me a little sad yet a little excited for something new. My kids are okay with it and that makes it a whole lot easier for me. They have grown up here in this house and it's time to move on to our next journey. I'm happy we are all still together. There has been some rough times. I never understood my daughter's illness, she has juvenile Diabetes Type 1, since she was 15 years old. We now have it better under control, she only weighed 120 and went down to 90 lbs before the ER told us what she had, other docs couldn't figure it out, just didn't do that one single blood test and she would have been diagnosed before I almost lost her. My son has grown into a good kid and I seem him and my daughter going places in their lives that should be better than mine was. That was always my goals for my kids not to be without things they wanted, a roof over their heads, their friends they grew up with around them after my divorce 10 years ago. They did their part too by being good kids getting good grades, no drugs or alcohol problems, it makes me more proud to see them now.
Now I'm just getting the house ready to move out now, I have good friends helping us move. As for my Lupus, I still have my good days and bad days. More good days lately guess I am in remission. Right now no flares, I just feel the usual joint pains, headaches and my face rash comes and goes. I am starting to itch a lot more and I break out in hives and I'll take Benadryl but it will knock me out for two hours or for the rest of the night. I can't take it while I'm at work so I end up having to go home and losing pay. I go to bed now at 7:30, 8 or 9pm when I feel tired and I wake up feeling better if I rest enough. My eyes still hurt and I can't see as great as I used to but I don't think I'm going blind or see blurry just my eyes hurt and I need to close them for awhile to not strain them. I'm thinking it could be the nerves inside my eyes that hurt the most.
So far only two months taking my meds. But I do forget things, I say stupid things that come out wrong when I talk. I forget directions North/South, or names. I forget what day it is sometimes especially on weekends. I had overdosed on my pills on Sunday thinking it was Monday so I took the pills twice in one day. My daughter helped me fix this problem by searching online and found me a pill machine that is battery operated, it has am./pm. and up to 3 weeks of pills so everyday it automatically goes off with a loud buzz and ejects my pill to take.
March 13,2010-almost time to move in a couple of weeks. Makes me a little sad yet a little excited for something new. My kids are okay with it and that makes it a whole lot easier for me. They have grown up here in this house and it's time to move on to our next journey. I'm happy we are all still together. There has been some rough times. I never understood my daughter's illness, she has juvenile Diabetes Type 1, since she was 15 years old. We now have it better under control, she only weighed 120 and went down to 90 lbs before the ER told us what she had, other docs couldn't figure it out, just didn't do that one single blood test and she would have been diagnosed before I almost lost her. My son has grown into a good kid and I seem him and my daughter going places in their lives that should be better than mine was. That was always my goals for my kids not to be without things they wanted, a roof over their heads, their friends they grew up with around them after my divorce 10 years ago. They did their part too by being good kids getting good grades, no drugs or alcohol problems, it makes me more proud to see them now.
Now I'm just getting the house ready to move out now, I have good friends helping us move. As for my Lupus, I still have my good days and bad days. More good days lately guess I am in remission. Right now no flares, I just feel the usual joint pains, headaches and my face rash comes and goes. I am starting to itch a lot more and I break out in hives and I'll take Benadryl but it will knock me out for two hours or for the rest of the night. I can't take it while I'm at work so I end up having to go home and losing pay. I go to bed now at 7:30, 8 or 9pm when I feel tired and I wake up feeling better if I rest enough. My eyes still hurt and I can't see as great as I used to but I don't think I'm going blind or see blurry just my eyes hurt and I need to close them for awhile to not strain them. I'm thinking it could be the nerves inside my eyes that hurt the most.
So far only two months taking my meds. But I do forget things, I say stupid things that come out wrong when I talk. I forget directions North/South, or names. I forget what day it is sometimes especially on weekends. I had overdosed on my pills on Sunday thinking it was Monday so I took the pills twice in one day. My daughter helped me fix this problem by searching online and found me a pill machine that is battery operated, it has am./pm. and up to 3 weeks of pills so everyday it automatically goes off with a loud buzz and ejects my pill to take.
Feb 21, 2010 old paper journal
Now about a month & 3 weeks taking the Plaquenil (200mg) 2 a day. I'm beginning to feel the side effects. The bad itching, hives, I get hot then really cold. My heart aches and it seems to make me more weak after when that happens. I took two 81 mg aspirins that seemed to help with the chest pain but it takes awhile. I get the red rash on my face when I feel a flare coming then I start to feel better as it goes away. I also notice my vocabulary stumbles on words that I say and come out all wrong. I think the thought but the words I use are incorrect which I hate, it makes me feel like I'm dumb. I forget things, like my bank PIN#, my alarm code at home or sometimes even where I am going. It's not all the time just random times. My vision has gotten a little blurry that now I need to wear my glasses right away when it starts to get dark. I get bruised easier that I don't know how I got them or when. My hands get real cold and hurt, I seem to make fists a lot but it hurts that I have to force my hands to stay open and flat especially when I sleep at night. I have been sleeping a lot more, I could sleep all day if I let myself but I force myself to get up because if I lay down all day my body hurts more and my joints are sore from not moving around. I don't think I am that sensitive to the sun as others. I don't intentionally lay out in the sun but I don't put hats or sunscreen on and I seem to be okay after a little while being in the sun probably because I am brown skinned. When I have a sudden flare I lose my appetite, I find it hard to swallow and I have lost all my energy. I just want to get home and lie down, then after 3-4 hours, I'll feel a little better. I don't seem to have much control of my body with the flares, they control me. The only thing I can control is taking my medications every day morning and night and making myself get up to go to work or make myself breakfast to make sure I ate at least once that day. I give myself the time to rest and sleep as much as I can so I can last the week at work. Right now my hand is starting to hurt from holding this pen to write. (from old journals I wrote with pen on paper)
I feel I have been taken away from things I liked to do but I'm thankful that I got to experience them. It's like going blind not but at least I got to see colors, I got to see my kids, a rainbow. I got to travel to sunny places, I rode my bike for miles on the beach and enjoyed the days in the sun. I have no regrets. My life will need to be at a slower pace now but I am okay with that. I've danced, I've ran around, I've enjoyed the company of my family and friends. Now I just need to slow down and take care of myself. I am not afraid though of whatever is to happen. I have always had a great faith in God and either here on earth or in heaven, I know that he is always by my side.
Next Dr appointment in July with my new Rhemutologist, Dr. M. No bad dreams anymore just really tired.
I feel I have been taken away from things I liked to do but I'm thankful that I got to experience them. It's like going blind not but at least I got to see colors, I got to see my kids, a rainbow. I got to travel to sunny places, I rode my bike for miles on the beach and enjoyed the days in the sun. I have no regrets. My life will need to be at a slower pace now but I am okay with that. I've danced, I've ran around, I've enjoyed the company of my family and friends. Now I just need to slow down and take care of myself. I am not afraid though of whatever is to happen. I have always had a great faith in God and either here on earth or in heaven, I know that he is always by my side.
Next Dr appointment in July with my new Rhemutologist, Dr. M. No bad dreams anymore just really tired.
Jan 28-28, 2010 old paper journal
Thursday, 4pm. had chest pain since 8pm the night before comes and goes very sharp pain, scared me, thought could be a heart attack or very bad heartburn, which I never get-drove myself to Urgent Care. The doctor gave me an aspirin and nitroglycerin pill helped me feel better. Doctor took 4 vials of blood, x-rays and EKG said I was okay with the Lupus. Doctor said I will get chest pain to take ibruprofen told him I take 500 mg Naproxen said that works.
Jan 29, 2010 went to work called my Specialist Rhemutalogist, Dr. D, said she didn't understand why I went to the Urgent Care told her I had sharp chest pain, still felt my chest bone sore. Doctor asked if was taking the Naproxen, told her Yes! Twice a day am/pm, said to see her if over weekend got worse. I read on the internet it could be Pericarditis, it felt like I had those symptoms but it wasn't Thank God! I will get a new doctor in Rheumatology, Dr. D. does not explain any of my Lupus care or symptoms to me!
Jan 29, 2010 went to work called my Specialist Rhemutalogist, Dr. D, said she didn't understand why I went to the Urgent Care told her I had sharp chest pain, still felt my chest bone sore. Doctor asked if was taking the Naproxen, told her Yes! Twice a day am/pm, said to see her if over weekend got worse. I read on the internet it could be Pericarditis, it felt like I had those symptoms but it wasn't Thank God! I will get a new doctor in Rheumatology, Dr. D. does not explain any of my Lupus care or symptoms to me!
January 18, 2010 from my old paperJournal
I had a small flare, if that's what it was, I don't exactly know what a real flare is supposed to feel like. I had back pain, neck pain, headache and nausea. I couldn't eat. I needed to lie down. When my neck hurts it's very uncomfortable felling lying down helps me feel better. I woke up with some sensation on my neck but no more nausea. I lose my appetite when I feel a flare. I worry about my bills. I'm late for the 1st time ever in my mortgage short $700 this month because I missed two days of work and then had a car accident that wasn't my fault and had to pay a $250 deductible to fix my car. Not much I can do about it.
January 18, 2010 Started taking Plaquenil
Now taking Plaquenil. It's been 1 1/2 weeks (200 mg) two a day. I feel anxiety, dry mouth, get bloated, loss of appetite, and minor diarrhea. I have really long weird dreams. I now weigh 200 used to weigh 175 last year. I get full eating quick at every meal. I kind of force myself to eat since I have no appetite. The good thing is I have a sudden boost of energy. I don't feel as exhausted. Just right now, I am on my monthly thing and I ache more than normal. I feel that burning sensation on my neck and upper back. I do feel some loss of hearing, my eyes get blurry once in a while and I mispell or get my vocabulary all wrong on what I write or try to talk about. But at least I have no nausea or vomiting which I would hate! and so far no loss of my hair. But it's only been 12 days into it so we'll see.
Starting from the beginning - Before I was Diagnosed
July 2009- Sick Nausea/Dizzy for a week-went to Doctor- Blood test done-nothing wrong
August 2009- out of breath climbing small flight of stairs, never felt before, went to doctor had stress test at Cardiologist-all ok, took X-rays of lungs-all okay, Blood Anemia-all okay, Thyroid checked-okay, cholesterol-ok at 150 very good, said I had a low immune system doctor checking why
September 2009-more blood- went to see Specialist Rheumatologist- said I have an autoimmune disease-Lupus SLE- ANA test positive- only Good News, all organs are OK
December 2009 Prescribed Naproxen 500 mg 2 per day for joint pain felt all over legs, hands, fingers, shoulder, upper and lower back. I also had my eyes tested and dilated for a baseline on my current eye status to start taking Plaquenil January 2010. I went to get the H1n1 Swine flu shot-6 hours later I got a really high fever, faint, nausea,but later felt better. I drank lots of water. I woke up with a sudden pain on my back shoulder blade on my right side, put an ice pack, took Naproxen and felt sore the next day. I started getting warm sensations in my shoulders and upper back, had neck pain, rapid heartbeat and dry cough. I just slept all day. For the rest of the month, I had sore joints and felt really tired and had no energy.
August 2009- out of breath climbing small flight of stairs, never felt before, went to doctor had stress test at Cardiologist-all ok, took X-rays of lungs-all okay, Blood Anemia-all okay, Thyroid checked-okay, cholesterol-ok at 150 very good, said I had a low immune system doctor checking why
September 2009-more blood- went to see Specialist Rheumatologist- said I have an autoimmune disease-Lupus SLE- ANA test positive- only Good News, all organs are OK
December 2009 Prescribed Naproxen 500 mg 2 per day for joint pain felt all over legs, hands, fingers, shoulder, upper and lower back. I also had my eyes tested and dilated for a baseline on my current eye status to start taking Plaquenil January 2010. I went to get the H1n1 Swine flu shot-6 hours later I got a really high fever, faint, nausea,but later felt better. I drank lots of water. I woke up with a sudden pain on my back shoulder blade on my right side, put an ice pack, took Naproxen and felt sore the next day. I started getting warm sensations in my shoulders and upper back, had neck pain, rapid heartbeat and dry cough. I just slept all day. For the rest of the month, I had sore joints and felt really tired and had no energy.
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