I use the term "Success" lightly. I left with that feeling of not knowing whether or not this was a "Great" appointment. I felt great, but some news had the potenial to be troubling (Waiting on the blood work). Anyways, she really understands me. Knows the right questions to ask and everything.
I started back up on the injections. I am very excited about this, they seem to have worked in the past. The problem for me is that I don't feel like my friends understand what it means. I say all the time that if you are sick please stay away, or at least tell me so I can be aware. Being on a TNF blocker means that if I get sick I have to stop the meds immediately (And I take it every two weeks, so stopping it isn't easy). That means that when I can go back on it I start over. Start getting it back in my system.
Getting sick for me is not what getting sick for a healthy person is like. If I get a cold I also get a flare. So imagine being conjested and dealing with pluerisy or joint pains. Imagine that cold lasting weeks and having the list of antibotics you've try being as long as your arm. And imagine missing all that work.
So to my friends, family and coworkers if you are sick stay away email or call. I wont be offended if you cancel plans I will be over joyed that you thought enough of me to not want me to get sick.
So I'm happily back on the meds. Looking for something for sleep. I have tried everything... well almost everything- tonight a bottle of wine is on the menu- I don't reccommend this I just need the sleep!
Tuesday, December 21, 2010
Thursday, December 16, 2010
My latest Doctor's appointment
So today I went and saw my Rhuemy. It was really great to see her and laugh and all, but it was hard to talk about what was going on. As you read earlier you know that when I got sick in August I went off everything. I wasn't doing too bad up until a month ago. I have been increasing my pain meds and a few weeks ago I finally got tired of it and made an appointment.
I mentioned two things to her. One some of the chest pain doesn't feel like my lungs, so she doesn't think it's anything but I'm going to a heart doctor so we can get a baseline. My mom had heart issues with her Lupus when she was about my age (Same doctor, and she remembers) so it's better safe than sorry. And two my liver. I have a gut feeling (no pun intended) that something is wrong with my liver. The blood tests say it's normal. But she did more tests and ones that hadn't been done before, so we will see.
So I am back on the TNF blocker and other stuff. She mentioned a GF diet again. I really just don't think I can handle it... I've tried and it is really hard and I have to do it for 6 weeks to see if it makes a difference. I am such a picky eater as it is that if you add that into it I wont be eating anything.
So the bottom line, hopefully going back on some of these meds will help my joints so I can start working out again. My goal is to loose 100 pounds by next year (Every pound is prednisone weight). So here goes nothing...
I mentioned two things to her. One some of the chest pain doesn't feel like my lungs, so she doesn't think it's anything but I'm going to a heart doctor so we can get a baseline. My mom had heart issues with her Lupus when she was about my age (Same doctor, and she remembers) so it's better safe than sorry. And two my liver. I have a gut feeling (no pun intended) that something is wrong with my liver. The blood tests say it's normal. But she did more tests and ones that hadn't been done before, so we will see.
So I am back on the TNF blocker and other stuff. She mentioned a GF diet again. I really just don't think I can handle it... I've tried and it is really hard and I have to do it for 6 weeks to see if it makes a difference. I am such a picky eater as it is that if you add that into it I wont be eating anything.
So the bottom line, hopefully going back on some of these meds will help my joints so I can start working out again. My goal is to loose 100 pounds by next year (Every pound is prednisone weight). So here goes nothing...
Wednesday, December 15, 2010
Hello Flare!!!
Ahh, another flare. I thought I had been so good lately but not good enough. As I was dealing with one of the issues this morning I kept repeating "I love having Lupus" or "Lupus isn't so bad". I think I thought that if I kept saying it that I could handle my Lupus, that the flare wouldn't be so bad but I was wrong. I noticed the rash last week, but when it went away I didn't think much of it.
So today starts the rice, applesauce and toast diet... so much fun. Again I always wonder why if I have to suffer with with a crappy diet why can't I loose weight?
So Mr. Flare, how long are you sticking around? you see I have a few things today over the next week, including work, so as much as I'd like to have you hang around can you please just go away.
Thanks- Love me.
So today starts the rice, applesauce and toast diet... so much fun. Again I always wonder why if I have to suffer with with a crappy diet why can't I loose weight?
So Mr. Flare, how long are you sticking around? you see I have a few things today over the next week, including work, so as much as I'd like to have you hang around can you please just go away.
Thanks- Love me.
Advocacy Day
Definition: The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support more funding for lupus research.
I want to do this, badly. In 2011 it's at the end of February and I plan on going. The problem... I don't want to spend an arm & a leg. So today I posted on my social media that I'm looking for airline miles.
Why do I want to do this? Because I want to make a difference, I want to go to Washington and talk about the need for Lupus research. I want my elected officials to know that people back home need their help.
So here goes, my plea for airline miles is posted here too.
I want to do this, badly. In 2011 it's at the end of February and I plan on going. The problem... I don't want to spend an arm & a leg. So today I posted on my social media that I'm looking for airline miles.
Why do I want to do this? Because I want to make a difference, I want to go to Washington and talk about the need for Lupus research. I want my elected officials to know that people back home need their help.
So here goes, my plea for airline miles is posted here too.
Tuesday, December 14, 2010
Another great tool
I found another great toy/tool. An iPad. Now I know, they aren't cheap but I can't believe how great it is. When I can't sleep I no longer have to drag myself out to the living room to watch tv or keep my mind busy I just turn on the iPad. Sometimes it's hard to hold or type on but it has done wonders for me... I just lvoe it.
Monday, December 13, 2010
Tired
I think the hardest part of having Lupus is the exhaustion. I am always so stinking tired. Monday is the hardest. I do what I can to make Sunday a rest day but I can't do it every weekend (Especially during football season). Today is no different, I can usually make it through but by the time I get home I am collasping on the bed. I can hardly hold my eyes open and most Monday's I'm asleep by 8:30. I hate it, I really do.
UPDATE: I wrote this yesterday but I didn't post it... I didn't want to. But last night was a HARD night. Not long after dinner I kissed my boys good night and crashed. Falling asleep at 7:00 is not the greatest idea but I couldn't hold my head up any longer. It's sad that my bed time is before my 9 year olds.
I ended up not sleeping well which makes today harder than yesterday. I feel every rain drop in my joints. Last night i just didn't feel well, couldn't get comfortable. Life just sucked. I'm tired of being on pain meds. Tired of waking up feeling crummy. Will it ever end?
Ok, now that I've let that out, I've decided I'm going to really focus on loosing weight. Prednisone weight is extremely hard to loose. I've tried a handful of times, but this time I'm going to do anything I can... plus I'm not on any meds right now so nothing can hinder it.
UPDATE: I wrote this yesterday but I didn't post it... I didn't want to. But last night was a HARD night. Not long after dinner I kissed my boys good night and crashed. Falling asleep at 7:00 is not the greatest idea but I couldn't hold my head up any longer. It's sad that my bed time is before my 9 year olds.
I ended up not sleeping well which makes today harder than yesterday. I feel every rain drop in my joints. Last night i just didn't feel well, couldn't get comfortable. Life just sucked. I'm tired of being on pain meds. Tired of waking up feeling crummy. Will it ever end?
Ok, now that I've let that out, I've decided I'm going to really focus on loosing weight. Prednisone weight is extremely hard to loose. I've tried a handful of times, but this time I'm going to do anything I can... plus I'm not on any meds right now so nothing can hinder it.
Wednesday, December 8, 2010
Lupus & Traveling
***DISCLAIMER- if you are the person traveling with me there is NOTHING in this posts that was negative towards you... it's just my internal thoughts and frustrations with myself***
So a couple of weeks ago I won a trip to Las Vegas for the American Country Awards. My first thougth was to take my husband, but he doesn't like country music so I asked my dearest friend to go with me. When I did this my Lupus didn't come to mind. You see when I travel I get pretty sick, and this trip was no different.
First, we didn't have a direct flight. That should have been a red flag for me, but it wasn't. We had to get up at 3:30 am to catch our flight and ended up traveling for 7 hours before finally touching down in Las Vegas. It takes a lot of energy to change planes. Carrying luggage from one gate to another.
I was very excited to know that is wasn't going to be hot in Vegas... it was perfect right around 50*. So I didn't think my stomach issues would come into play but boy was I wrong.
So we finally crashed at about 9:00 pm. It was a rough day, I was exhausted and beyond my number of "Spoons" for the day (maybe even the week).
My biggest frustration was having my friend see my sick. It was so hard to make 17 trips to the bathroom, not being able to eat and having to call it a night so early. I know this is something I have to get over. And someday I will. But this was a hard weekend. I know it will take a few days to get over all I did.
So today I start resting and getting ready for another weekend full of Christmas events. I can't wait for the holidays to be over.
So a couple of weeks ago I won a trip to Las Vegas for the American Country Awards. My first thougth was to take my husband, but he doesn't like country music so I asked my dearest friend to go with me. When I did this my Lupus didn't come to mind. You see when I travel I get pretty sick, and this trip was no different.
First, we didn't have a direct flight. That should have been a red flag for me, but it wasn't. We had to get up at 3:30 am to catch our flight and ended up traveling for 7 hours before finally touching down in Las Vegas. It takes a lot of energy to change planes. Carrying luggage from one gate to another.
I was very excited to know that is wasn't going to be hot in Vegas... it was perfect right around 50*. So I didn't think my stomach issues would come into play but boy was I wrong.
So we finally crashed at about 9:00 pm. It was a rough day, I was exhausted and beyond my number of "Spoons" for the day (maybe even the week).
My biggest frustration was having my friend see my sick. It was so hard to make 17 trips to the bathroom, not being able to eat and having to call it a night so early. I know this is something I have to get over. And someday I will. But this was a hard weekend. I know it will take a few days to get over all I did.
So today I start resting and getting ready for another weekend full of Christmas events. I can't wait for the holidays to be over.
Wednesday, December 1, 2010
Life is funny
Life is funny, isn't it? Today is a bad day, it's been a bad week. I'm tired and my pain level is through the roof. I just want to crawl under a table. I haven't seen my dr. since July and honestly, I don't want to. I keep staring at the phone telling myself to call, but I just can't. I can't because it means new drugs. Or old drugs that I have tried and failed on before.
Having Lupus has it's ups and downs. (Wait- who am I kidding- what ups?). The meds I try are crazy, the side effects are nuts and frankly I'm tired. I'm tired of the medical card in my wallet having to be changed every six weeks. I'm tired of wondering if the new symptom is a side effect. But most of all I'm tired of finding a drug that works so well only to have it cause a side effect so unbearable I can't stand it.
Lupus is definately a game changer for me. I quit playing softball, I rest more than I play and just last month I stepped down from a volunteer job that I have loved for 15 years. One of the hardest things I have had to sacrifice because of Lupus. But I know that there will be other opportunities for me to help others that wont cause me and my family the sacrifices I don't want to make.
Lupus is a thorn in my side and yet, because of it I have met new friends. Cried with old ones and been there for those going through this dianosis.
Bottom line- I love my life. If a cure for Lupus comes I will be first in line, but for now I will hold my head up high and try and do everything I can to just get through my day.
Having Lupus has it's ups and downs. (Wait- who am I kidding- what ups?). The meds I try are crazy, the side effects are nuts and frankly I'm tired. I'm tired of the medical card in my wallet having to be changed every six weeks. I'm tired of wondering if the new symptom is a side effect. But most of all I'm tired of finding a drug that works so well only to have it cause a side effect so unbearable I can't stand it.
Lupus is definately a game changer for me. I quit playing softball, I rest more than I play and just last month I stepped down from a volunteer job that I have loved for 15 years. One of the hardest things I have had to sacrifice because of Lupus. But I know that there will be other opportunities for me to help others that wont cause me and my family the sacrifices I don't want to make.
Lupus is a thorn in my side and yet, because of it I have met new friends. Cried with old ones and been there for those going through this dianosis.
Bottom line- I love my life. If a cure for Lupus comes I will be first in line, but for now I will hold my head up high and try and do everything I can to just get through my day.
Support system
Last night I was reminded once again what an amazing support system I have. It also reminded me of those that don't have a support system. I don't know how you go through your life without one.
My husband has been at my side through thick and thin. It hasn't been all roses, we have had our ups and downs.
I have a full time job. Mainly, because I have too. I don't mind working, I actually enjoy it most days. My family needs me to have the job. But because I work some days I get home and have nothing left. I collapse on my bed. I try to get up after Dave gets home and help make dinner but 9 times out of 10 he wont let me (Although, this might be because I can't cook). I suffer from guilt. I hate hearing my son giggle in the other room and have no idea what's going on. I hate the idea of feeling like I need to push myself.. but not being able too. I hate the internal battle I have of "Am I really out of energy today" or "Am I just lazy?". It's hard because my mind says go, go, go, but my body says not a chance.
My husband is amazing, he knows when I am at my wits end. He knows when I just need to sit down. He is amazing. I am so thankful for the man that God brought me. I am blessed.
My husband has been at my side through thick and thin. It hasn't been all roses, we have had our ups and downs.
I have a full time job. Mainly, because I have too. I don't mind working, I actually enjoy it most days. My family needs me to have the job. But because I work some days I get home and have nothing left. I collapse on my bed. I try to get up after Dave gets home and help make dinner but 9 times out of 10 he wont let me (Although, this might be because I can't cook). I suffer from guilt. I hate hearing my son giggle in the other room and have no idea what's going on. I hate the idea of feeling like I need to push myself.. but not being able too. I hate the internal battle I have of "Am I really out of energy today" or "Am I just lazy?". It's hard because my mind says go, go, go, but my body says not a chance.
My husband is amazing, he knows when I am at my wits end. He knows when I just need to sit down. He is amazing. I am so thankful for the man that God brought me. I am blessed.
Monday, November 15, 2010
What to do....
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.
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.
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.
Monday, April 12, 2010
moving day is coming
Oh boy. We move from an apartment to a 5 bedroom house in just 5 days. Aside from the actual moving part I'm doing ok. But this weekend made me realize that I really can't do anything.
I tried to help my parents move their stuff downstairs and I couldn't do it. what am I thinking?
I am really glad our friends have jumped in but I just don't know if I can stand on teh side and do nothing. This weekend is going to be crazy.
just thought I would share.
I tried to help my parents move their stuff downstairs and I couldn't do it. what am I thinking?
I am really glad our friends have jumped in but I just don't know if I can stand on teh side and do nothing. This weekend is going to be crazy.
just thought I would share.
Friday, April 9, 2010
Pain
In the last few months my pain has been managable, but today it's gone through the roof. I have taken everything I can take while at work and nothing is taking the edge off.
I hate it when pain takes over every thought. I just want to forget about it and have it go away.
I hate it when pain takes over every thought. I just want to forget about it and have it go away.
Wednesday, April 7, 2010
What's it like?
Sometimes i dread this question and sometimes I yearn for the right person to ask it. I want those that care to ask. Friends that have been there for years and years and still don't understand. But I also don't want to tell someone that is just asking to kill time or show sympathy.
I have accepted the pain, the drugs, the doctors and all the unknowns. This week has turned into an interesting one. I went to my PCP on Monday about a 3 week long headache. To me going to the doctor was a waste of time since I knew the answer would end up being "just Lupus" but with all the people nagging me I figured I would kill two birds with one stone and ask about a side pain that was getting worse. And of course, my addiction to social media sites meant that I would share where I was. But I wasn't ready for what people told me.
"I'm sorry" that's what they said. I want to scream. Did you give me Lupus? then don't say you are sorry, cause you have no reason to be. It drives me crazy and really I know these people are just trying to give me some encouragement and show they care. But the words "I'm sorry" don't show me that. I don't want people to apologize for me having Lupus. After 10 years of dealing with it I have accepted it as my path in life and I am going to do everything I can to make sure I follow it as best I can and share my pain and resources with the many others that have it.
My other issue is friends that have been around me for years and still expect me to pitch in or go out. I can't always do the things I want to. Maybe I have been "faking" it too much. Maybe they can't see that holding a handful of playing cards is crazy painful. Maybe they don't see that when we go out on a friday night I spend Saturday napping off and on. Maybe they don't see that the weekend getaway would take me another 2 days to survive.
And i know that some of their ignorance is my fault. I don't want to talk about it publicly, I don't want to draw attention to myself when I am feeling the worst, and I don't want you to make me feel bad for having to say no.
As I am writing this I just realized that this month marks the 10 year mark to my diagnosis. Wow 10 years. Part of me wants to weep and the other just block it from my mind. It's hard, really truly hard. But I know my Lupus only effects a fraction of what it does to others and I need to be greatful that it hasn't gotten worse.
tomorrow I go in for a CAT Scan of my liver. We will see what happens in there. I really hope this is just nothing, but I fear it is something....
I have accepted the pain, the drugs, the doctors and all the unknowns. This week has turned into an interesting one. I went to my PCP on Monday about a 3 week long headache. To me going to the doctor was a waste of time since I knew the answer would end up being "just Lupus" but with all the people nagging me I figured I would kill two birds with one stone and ask about a side pain that was getting worse. And of course, my addiction to social media sites meant that I would share where I was. But I wasn't ready for what people told me.
"I'm sorry" that's what they said. I want to scream. Did you give me Lupus? then don't say you are sorry, cause you have no reason to be. It drives me crazy and really I know these people are just trying to give me some encouragement and show they care. But the words "I'm sorry" don't show me that. I don't want people to apologize for me having Lupus. After 10 years of dealing with it I have accepted it as my path in life and I am going to do everything I can to make sure I follow it as best I can and share my pain and resources with the many others that have it.
My other issue is friends that have been around me for years and still expect me to pitch in or go out. I can't always do the things I want to. Maybe I have been "faking" it too much. Maybe they can't see that holding a handful of playing cards is crazy painful. Maybe they don't see that when we go out on a friday night I spend Saturday napping off and on. Maybe they don't see that the weekend getaway would take me another 2 days to survive.
And i know that some of their ignorance is my fault. I don't want to talk about it publicly, I don't want to draw attention to myself when I am feeling the worst, and I don't want you to make me feel bad for having to say no.
As I am writing this I just realized that this month marks the 10 year mark to my diagnosis. Wow 10 years. Part of me wants to weep and the other just block it from my mind. It's hard, really truly hard. But I know my Lupus only effects a fraction of what it does to others and I need to be greatful that it hasn't gotten worse.
tomorrow I go in for a CAT Scan of my liver. We will see what happens in there. I really hope this is just nothing, but I fear it is something....
Monday, April 5, 2010
Once again I have failed to update my blog :-(. I really need to get into a habbit of taking care of this blog. So once again, forgive me.
A LOT has happened since mid January. My family & I went on an 8 day vacation to Orlando. It was AMAZING! But I spent a few weeks after to just trying to get over the travel and all that came with it. I did think it was well worth it.
February came and went & so did March. So hard to believe.
3 weeks ago I started getting headaches and finally went to the Doctor today. So I start some more Rx in hopes of dealing with it... the list of drugs I take is getting longer & longer. Hopefully it will take care of it though so I can go a day with out head pain.
I also asked the doc about a side pain I have been having. He checked it out and immediatly ordered liver function test and an immediate ultrasound. GOOD times!
So the Lupus fight continues. I'm sure I will waste my time on all these tests only to be told "it's just Lupus".
A LOT has happened since mid January. My family & I went on an 8 day vacation to Orlando. It was AMAZING! But I spent a few weeks after to just trying to get over the travel and all that came with it. I did think it was well worth it.
February came and went & so did March. So hard to believe.
3 weeks ago I started getting headaches and finally went to the Doctor today. So I start some more Rx in hopes of dealing with it... the list of drugs I take is getting longer & longer. Hopefully it will take care of it though so I can go a day with out head pain.
I also asked the doc about a side pain I have been having. He checked it out and immediatly ordered liver function test and an immediate ultrasound. GOOD times!
So the Lupus fight continues. I'm sure I will waste my time on all these tests only to be told "it's just Lupus".
Wednesday, January 20, 2010
My new favorite item
My new favorite gadget. I have to say I LOVE, LOVE, LOVE this. I hate having to ask my husband to open my pill bottles and with my kids in the house I don't feel right about getting regular caps.
This tool is a wonderful gadget. The magnifying glass may come in handy some day but for now it just opens my bottlesClick here to learn more
Wednesday, January 13, 2010
immunosuppressant
I have a love hate relationship with my immunosuppressants. I LOVE what they do to me.. I feel so much better when I'm on them. My Lupus rarely rears it's ugly head and I have enrgy and no pain. I just feel fabulous.
My hate is because if you get sick you have to go off of them until you are better. So right now I take one shot a week. On Monday night I knew I should have held off a day or two because my brother and his family spent the whole weekend at my house and his wife & both kids had a cold. But I thought, no... I wont get it. Sure, I've kissed, hugged, shared food with my nephews but there is no way I'm getting sick- I feel great! Well today I woke up with a soar throat and nose issues.... NOOOOOOOOO!
so when Monday comes around I will need to make a decision. take the shot or not. last time I had to go off my shot I suffered horribly. So here is to hoping that my body will kick this cold ASAP and not have me make a decision to take it or to not.
My hate is because if you get sick you have to go off of them until you are better. So right now I take one shot a week. On Monday night I knew I should have held off a day or two because my brother and his family spent the whole weekend at my house and his wife & both kids had a cold. But I thought, no... I wont get it. Sure, I've kissed, hugged, shared food with my nephews but there is no way I'm getting sick- I feel great! Well today I woke up with a soar throat and nose issues.... NOOOOOOOOO!
so when Monday comes around I will need to make a decision. take the shot or not. last time I had to go off my shot I suffered horribly. So here is to hoping that my body will kick this cold ASAP and not have me make a decision to take it or to not.
Thursday, January 7, 2010
Why can't I sleep????
You know what sucks about not being able to sleep? that you can't get up and do anything cause you will wake others up and you are begging your body to just drift off. not being able to sleep is sign one that a flare is coming. Some would think that my body would be CRAVING rest when a flare is on it's way, but no. Mine says "time to get up".
I am a greedy sleeper. I like my sleep and I do not like to loose one minute of it, so you can imagine that I am VERY cranky today. I have a big weekend ahead and i don't have time for a flare.
Hmmmmm.... now that I type that, I realize I say that every time I have a flare.
Happy Thursday!
I am a greedy sleeper. I like my sleep and I do not like to loose one minute of it, so you can imagine that I am VERY cranky today. I have a big weekend ahead and i don't have time for a flare.
Hmmmmm.... now that I type that, I realize I say that every time I have a flare.
Happy Thursday!
Tuesday, January 5, 2010
Joints
JOINTS: (N)
1. junction between bones: a part of the body where bones are connected, e.g. the knee, elbow, or skull.
2. junction between segments of invertebrate body: any of the points of connection between movable segments of the body in an insect, spider, crab, or other invertebrate
As I see this definition of the word "Joint" it makes me chuckle. Joints to me are more than just where the body connects... they are a source or REAL pain. My last chest xray showed signs of arthritis in my back- wait your back has joints? I am always shocked to learn something is a "joint" because I never really thought of it that way. My ear pain, is actually my jaw- which is a joint! this probably doesn't shock most people but it shocked me... just another thing to blame on Lupus.
Today my index finger is in severe pain. I'm trying not to use it at all but when my job is sitting at a computer that makes it IMPOSSIBLE. I look like a dork trying to type with nine fingers and I'm dealing with a TON of typos.
Cori's definition of Joints:
A source of pain, a place where your body connects and can cause severe pain at times.
I wish I knew what I did to my finger but I'm sure it's just Lupus related as everything else is. Time to continue my week.
1. junction between bones: a part of the body where bones are connected, e.g. the knee, elbow, or skull.
2. junction between segments of invertebrate body: any of the points of connection between movable segments of the body in an insect, spider, crab, or other invertebrate
As I see this definition of the word "Joint" it makes me chuckle. Joints to me are more than just where the body connects... they are a source or REAL pain. My last chest xray showed signs of arthritis in my back- wait your back has joints? I am always shocked to learn something is a "joint" because I never really thought of it that way. My ear pain, is actually my jaw- which is a joint! this probably doesn't shock most people but it shocked me... just another thing to blame on Lupus.
Today my index finger is in severe pain. I'm trying not to use it at all but when my job is sitting at a computer that makes it IMPOSSIBLE. I look like a dork trying to type with nine fingers and I'm dealing with a TON of typos.
Cori's definition of Joints:
A source of pain, a place where your body connects and can cause severe pain at times.
I wish I knew what I did to my finger but I'm sure it's just Lupus related as everything else is. Time to continue my week.
Monday, January 4, 2010
I'm back
It's a shock I know. But I think it's time to start keeping track of all that is going on in my Lupus world. I sure have missed having a place to dump it all and recent comments made me realize that people are actually reading this!
The remainder of this year was ok. I had some severe flairs and one that lasted several weeks. I am getting better at managing them, but sometimes the pain is just so unbearable. I also decided to help out with the Seattle Lupus Walk in October and had such a great time I decided to sit on the committee again. It was so awesome to see our ideas and hard work become a huge success.
In November I suffered a BAD flair with massive chest pains. It was to the point that I couldn't move. My Lupus Dr. decided to try a new medication with me, one that isn't treated for Lupus. After being on it for 4 weeks I was amazed at how I felt. We then tried to push the expensive ($2,000 a month) drug through my insurance and with a huge praise they paid it! God is so great!
I have been on it 6 weeks and it still seems to be working GREAT with little side effects. My Dr. thinks that by the time we go to Disneyworld at the end of the month I should be 110% better and wont need any assistance while I'm there (wheelchair) which makes me even MORE excited!!! WOO!
So that was the rest of my year. I hope to keep this blog up from now on.
The remainder of this year was ok. I had some severe flairs and one that lasted several weeks. I am getting better at managing them, but sometimes the pain is just so unbearable. I also decided to help out with the Seattle Lupus Walk in October and had such a great time I decided to sit on the committee again. It was so awesome to see our ideas and hard work become a huge success.
In November I suffered a BAD flair with massive chest pains. It was to the point that I couldn't move. My Lupus Dr. decided to try a new medication with me, one that isn't treated for Lupus. After being on it for 4 weeks I was amazed at how I felt. We then tried to push the expensive ($2,000 a month) drug through my insurance and with a huge praise they paid it! God is so great!
I have been on it 6 weeks and it still seems to be working GREAT with little side effects. My Dr. thinks that by the time we go to Disneyworld at the end of the month I should be 110% better and wont need any assistance while I'm there (wheelchair) which makes me even MORE excited!!! WOO!
So that was the rest of my year. I hope to keep this blog up from now on.
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