It's Monday. It's a very difficult Monday. I didn't really think I had over done it over the weekend but apparently I did. I tried my best to rest, sat when I could. Fell asleep before 10:30 and yesterday I spent the afternoon in bed.
And yet when I woke up this morning I wanted nothing more than to stay in bed. The problem. No sick time. I have used it all up and I am reluctant to use my vacation time for days off. But as I sit here at my desk I feel like I am going to loose it. I am going crazy. I would give my right arm to lay down, cry my eyes out, scream in pain. This really sucks. Tylenol is doing nothing and I can't take anything stronger at work... what a huge frustration.
I love my job, I love working and right now I can't afford not to work. Life is so frustrating and such a challenge. How do I manage to sit here for 8+ hours a day? I really need a vacation. Can I make it through this week... I don't know. I know today I will go home and spend the entire evening in bed, leaving my wonderful husband to cook and take care of my 9 year old.... but I really don't have a choice. I need something.. maybe a million dollars so I can take a few years off. :-). So today I will continue to sit at my desk, fight back the tears and pray that 4:00 comes much quicker than normal.
Monday, November 15, 2010
Wednesday, November 10, 2010
One of the Most Frustrating things about having Lupus
Let me just start this post by saying my Rhuemy & PCP are AMAZING. This post stems from issues with specialist.
The first most frusting things is when I am dismissed. In August I was really, really sick. I spent days in bed, a trip to the ER and trip after trip to the doctor for tests and IV fluids. Both my normal doctors were on vacation but I saw a new family doctor who didn't dismiss me, I was amazed. I know my body better than the average person. I know when I have a fever and I know when it's not Lupus. After a few weeks I went to a GI who did more tests and I learned that everything was "fine". So there it was "It's Lupus".
It is really frustrating. Now I am dealing with new symptoms. I am dizzy all the time, my core temptature has dropped to 94.5* and these headaches are INSANE. But it's Lupus.
The dizzyiness makes me so sick. walking down the hall is intersting, I sometimes wonder if people think I'm drunk. But of course it is blown off, I have Lupus therefore they can't help me, unless I want to take steriods and steriods don't work.
The core tempature thing is really interesting. I didn't know that it WAS lupus related. I had never heard of this side effect, but it really sucks. Frist of all I'm cold all the time! When I get home from work I usually take a burning shower just to warm my bones & joints up. then I crawl into bed under 5 or 6 blankets and a heating pad just to warm up. This is also an issue when I go to the doctors & they ask if I have had a fever. I know when I have a fever, if I'm "normal" they think nothing of it. to me 98.6* means I am clamy and sick. So if I am asked if I have had a fever I say "yes, but I don't know what it is because I don't take it, I just know when I have a fever". So now to find a cure for being cold, because nothing is more miserable than spending my day shivering or in so much pain from my cold, cold bones.
So I guess I just need to learn that most things are "just Lupus". But what if something isn't "Just Lupus"? what do I do then?
The first most frusting things is when I am dismissed. In August I was really, really sick. I spent days in bed, a trip to the ER and trip after trip to the doctor for tests and IV fluids. Both my normal doctors were on vacation but I saw a new family doctor who didn't dismiss me, I was amazed. I know my body better than the average person. I know when I have a fever and I know when it's not Lupus. After a few weeks I went to a GI who did more tests and I learned that everything was "fine". So there it was "It's Lupus".
It is really frustrating. Now I am dealing with new symptoms. I am dizzy all the time, my core temptature has dropped to 94.5* and these headaches are INSANE. But it's Lupus.
The dizzyiness makes me so sick. walking down the hall is intersting, I sometimes wonder if people think I'm drunk. But of course it is blown off, I have Lupus therefore they can't help me, unless I want to take steriods and steriods don't work.
The core tempature thing is really interesting. I didn't know that it WAS lupus related. I had never heard of this side effect, but it really sucks. Frist of all I'm cold all the time! When I get home from work I usually take a burning shower just to warm my bones & joints up. then I crawl into bed under 5 or 6 blankets and a heating pad just to warm up. This is also an issue when I go to the doctors & they ask if I have had a fever. I know when I have a fever, if I'm "normal" they think nothing of it. to me 98.6* means I am clamy and sick. So if I am asked if I have had a fever I say "yes, but I don't know what it is because I don't take it, I just know when I have a fever". So now to find a cure for being cold, because nothing is more miserable than spending my day shivering or in so much pain from my cold, cold bones.
So I guess I just need to learn that most things are "just Lupus". But what if something isn't "Just Lupus"? what do I do then?
Tuesday, October 5, 2010
From My Heart
I have a feeling I have really annoyed some of you with all my post for the Lupus Walk, but it is really important to me and let me tell you why.
First, of course, I have Lupus. But I hope that many of you don't actually see it in me. For some reason I try to hide it. I don't want to be discounted because of Lupus so I do everything I can to make it "go away" when I'm around others. I know I fail sometimes, but I try.
I have had Lupus for 10 years and as Lupus does it affects each person differently. For me it mainly affects my Lungs and joints plus the exhaustion I deal with plus a number of other small things.
I live in pain 90% of the time (the other 10% I'm medicated) :-). Small things are extremely painful, holding a pencil or handle for too long, sitting in one place, walking across a room and so on.
I am lucky if I go a month without seeing a doctor. as soon as I get a cold it is only a matter of time before it becomes a serious infection. And don't get me started on all the medication and thier side effects. I take some meds just to off set the side effects of others.
Secondly, two years ago I attended the Seattle Lupus walk for the first time with the invation of my Lupus buddy Gracie (Then 7 years old). It was a lot of fun but I wanted it to be bigger so I contacted the office to join the committee for the following walk.
Last's years walk was my first as a committee member and even with the rain DUMPING down we had record numbers. 700+ attenders, $70,000+ in money raised. It was amazing.
This year I want to see those numbers go higher, even though they are slowly creeping up there I am getting nervous with just 11 days til the walk. The success of this walk is such a strong desire of my heart. I don't want someone to hear the word "Lupus" and ask what in the world that is, or is that serious. I want to out grow Magnuson Park. I want Purple to be as noticeable as Pink.
So I ask, encourage and beg you to join in with this walk in 1 of 3 ways:
1. Join our team! We have a ton of fun
2. Donate to our team. Even the smallest amount will make a HUGE differnce
and/or
3. Repost this. Share it with your friends and family. Let's raise awareness... and if you have Lupus please add how it affects you... since it affects each of us differently your story could make a huge difference.
You can Click here to donate or join our team
And for another great story of how Lupus affects others, check out the Spoon Theory Click Here
First, of course, I have Lupus. But I hope that many of you don't actually see it in me. For some reason I try to hide it. I don't want to be discounted because of Lupus so I do everything I can to make it "go away" when I'm around others. I know I fail sometimes, but I try.
I have had Lupus for 10 years and as Lupus does it affects each person differently. For me it mainly affects my Lungs and joints plus the exhaustion I deal with plus a number of other small things.
I live in pain 90% of the time (the other 10% I'm medicated) :-). Small things are extremely painful, holding a pencil or handle for too long, sitting in one place, walking across a room and so on.
I am lucky if I go a month without seeing a doctor. as soon as I get a cold it is only a matter of time before it becomes a serious infection. And don't get me started on all the medication and thier side effects. I take some meds just to off set the side effects of others.
Secondly, two years ago I attended the Seattle Lupus walk for the first time with the invation of my Lupus buddy Gracie (Then 7 years old). It was a lot of fun but I wanted it to be bigger so I contacted the office to join the committee for the following walk.
Last's years walk was my first as a committee member and even with the rain DUMPING down we had record numbers. 700+ attenders, $70,000+ in money raised. It was amazing.
This year I want to see those numbers go higher, even though they are slowly creeping up there I am getting nervous with just 11 days til the walk. The success of this walk is such a strong desire of my heart. I don't want someone to hear the word "Lupus" and ask what in the world that is, or is that serious. I want to out grow Magnuson Park. I want Purple to be as noticeable as Pink.
So I ask, encourage and beg you to join in with this walk in 1 of 3 ways:
1. Join our team! We have a ton of fun
2. Donate to our team. Even the smallest amount will make a HUGE differnce
and/or
3. Repost this. Share it with your friends and family. Let's raise awareness... and if you have Lupus please add how it affects you... since it affects each of us differently your story could make a huge difference.
You can Click here to donate or join our team
And for another great story of how Lupus affects others, check out the Spoon Theory Click Here
Wednesday, September 15, 2010
Reposting this note I put on Facebook today:
It first started just over 10 years ago. A couple of weeks after David & I got married I was in and out of the doctor’s & ER with chest pain. I had several tests done, my heart & lungs were normal, so there was no explanation for what was going on.
One month after it all started, I was talking with my mom & she asked if they had tested me for Lupus. At that time Lupus was a disease my mom had, that is all I knew. So I went online and did some of my own research. I learned that I had 7 of the 11 symptoms, the only thing missing was a blood test to confirm the diagnosis. I headed to my doctor’s armed with new information and the request for a blood test. I was surprised to find that it took her some serious convincing to get her to order the test. She told me I was too young and that even if the test was positive it was highly unlikely that I have this disease (I was 22 at the time).
The ANA test takes a week to come back and I anxiously awaited. When I got the call that it was positive I immediately made an appointment with my mom’s rheumatologist, the best in the state . We discussed my symptoms and took more blood and moved on with the treatment.
During the first 3 years I took drug after drug, none worked. At one point I was on such heavy doses of steroids that my liver started to have issues- not to mention the weight I had gained. So I finally stood up and said enough. The put me on oral metho and the side effects were so bad, but at that time I lost my medical insurance, so I was on my own.
I then took a couple years off with no treatments for my lupus, I was in severe denial. Someday I may regret that denial, but for now I am learning to live on medication. Learning that pain is a constant and to stop blaming my pain & to stop making excuses for every little pain, or side effect to the disease I face. I know I can survive this, and I know I will survive this but it is only with God’s strength & love that I can get out of bed each day
Now I am back on trying new meds and seeing what works and what doesn't. I still refuse steriods, even though my doctors always mention them as a first step to whatever is bothering me. I am living my life trying not to make "Lupus" define my life. Yes, I should probably slow down, yes I should learn to say no more often. But for now I am going to continue to do what my heart wants with the amazing support of my husband and family.
So today I post this note because on October 16, 2010 is the annual Seattle Mad Hatter, Walk, Run & Roll for Lupus. This walk is importnat to me on so many levels. One, I am on the planning committee and it's something I am passionate about. Two, It is an amazing feeling to see so many friends & family come together for me and Gracie. The support I feel on that day gets me through so many bad days. and three, it's a good cause. One that doesn't get much attention but needs it. There hasn't been a new drug to treat Lupus in over 50 years! It's time to start standing up and making a difference in this disease!!
I hope you can join our team and walk with us on Oct 16th. if you can't, would you consider donating to our team
http://bit.ly/bLR64O
It first started just over 10 years ago. A couple of weeks after David & I got married I was in and out of the doctor’s & ER with chest pain. I had several tests done, my heart & lungs were normal, so there was no explanation for what was going on.
One month after it all started, I was talking with my mom & she asked if they had tested me for Lupus. At that time Lupus was a disease my mom had, that is all I knew. So I went online and did some of my own research. I learned that I had 7 of the 11 symptoms, the only thing missing was a blood test to confirm the diagnosis. I headed to my doctor’s armed with new information and the request for a blood test. I was surprised to find that it took her some serious convincing to get her to order the test. She told me I was too young and that even if the test was positive it was highly unlikely that I have this disease (I was 22 at the time).
The ANA test takes a week to come back and I anxiously awaited. When I got the call that it was positive I immediately made an appointment with my mom’s rheumatologist, the best in the state . We discussed my symptoms and took more blood and moved on with the treatment.
During the first 3 years I took drug after drug, none worked. At one point I was on such heavy doses of steroids that my liver started to have issues- not to mention the weight I had gained. So I finally stood up and said enough. The put me on oral metho and the side effects were so bad, but at that time I lost my medical insurance, so I was on my own.
I then took a couple years off with no treatments for my lupus, I was in severe denial. Someday I may regret that denial, but for now I am learning to live on medication. Learning that pain is a constant and to stop blaming my pain & to stop making excuses for every little pain, or side effect to the disease I face. I know I can survive this, and I know I will survive this but it is only with God’s strength & love that I can get out of bed each day
Now I am back on trying new meds and seeing what works and what doesn't. I still refuse steriods, even though my doctors always mention them as a first step to whatever is bothering me. I am living my life trying not to make "Lupus" define my life. Yes, I should probably slow down, yes I should learn to say no more often. But for now I am going to continue to do what my heart wants with the amazing support of my husband and family.
So today I post this note because on October 16, 2010 is the annual Seattle Mad Hatter, Walk, Run & Roll for Lupus. This walk is importnat to me on so many levels. One, I am on the planning committee and it's something I am passionate about. Two, It is an amazing feeling to see so many friends & family come together for me and Gracie. The support I feel on that day gets me through so many bad days. and three, it's a good cause. One that doesn't get much attention but needs it. There hasn't been a new drug to treat Lupus in over 50 years! It's time to start standing up and making a difference in this disease!!
I hope you can join our team and walk with us on Oct 16th. if you can't, would you consider donating to our team
http://bit.ly/bLR64O
Saturday, June 5, 2010
Friends
I am posting this from my phone while camping, so be kind and pantient with typos.
I am frustrated...... I don't know how to get my friends to realize that I'm sick. They know I have Lupus but they seem to forget.
Right now I'm camping with a large group of friends and when I say I need to go to bed early or take a nap they want to know why and they are annoyed- or at least that is how I take it. Maybe I'm taking it wrong? I don't know. And it's not everyone. Sometimes it's the ones really close to me. I don't want to say " my chest hurts" or "I'm tired because of lupus". I don't want to draw attention to the fact that I need extra care. How do I tell them that so they will hear me?
I am frustrated...... I don't know how to get my friends to realize that I'm sick. They know I have Lupus but they seem to forget.
Right now I'm camping with a large group of friends and when I say I need to go to bed early or take a nap they want to know why and they are annoyed- or at least that is how I take it. Maybe I'm taking it wrong? I don't know. And it's not everyone. Sometimes it's the ones really close to me. I don't want to say " my chest hurts" or "I'm tired because of lupus". I don't want to draw attention to the fact that I need extra care. How do I tell them that so they will hear me?
Friends
I am posting this from my phone while camping, so be kind and pantient with typos.
I am frustrated...... I don't know how to get my friends to realize that I'm sick. They know I have Lupus but they seem to forget.
Right now I'm camping with a large group of friends and when I say I need to go to bed early or take a nap they want to know why and they are annoyed- or at least that is how I take it. Maybe I'm taking it wrong? I don't know. And it's not everyone. Sometimes it's the ones really close to me. I don't want to say " my chest hurts" or "I'm tired because of lupus". I don't want to draw attention to the fact that I need extra care. How do I tell them that so they will hear me?
I am frustrated...... I don't know how to get my friends to realize that I'm sick. They know I have Lupus but they seem to forget.
Right now I'm camping with a large group of friends and when I say I need to go to bed early or take a nap they want to know why and they are annoyed- or at least that is how I take it. Maybe I'm taking it wrong? I don't know. And it's not everyone. Sometimes it's the ones really close to me. I don't want to say " my chest hurts" or "I'm tired because of lupus". I don't want to draw attention to the fact that I need extra care. How do I tell them that so they will hear me?
Monday, April 26, 2010
Change, Change, Change
I hate change. I don't handle change well, especially when it comes to my health. I have had a headache for 6 weeks. So I had the regular battle of do I see my PCP or my Rhuemy. I opted for my PCP because I hadn't seen him in a while. After a week of trying a couple of meds I went back and he decided it was time to try Prednisone. Woo! I hate that drug, it doesn't work. But I agreed.
So today I saw my Rhuemy for a routine check up and talked about the headaches and it is possible that the medication I take for my chest pain is causing the headache. So now I have to decide if I deal with the headaches or the chest pain. This is so disappointing. they both are annoying in there own way.
So I will go off it for one week and see what happens. If the headaches stay I have to have more tests done. If the headaches go I have a terrible decision to make.
So today I saw my Rhuemy for a routine check up and talked about the headaches and it is possible that the medication I take for my chest pain is causing the headache. So now I have to decide if I deal with the headaches or the chest pain. This is so disappointing. they both are annoying in there own way.
So I will go off it for one week and see what happens. If the headaches stay I have to have more tests done. If the headaches go I have a terrible decision to make.
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