I woke up for the first time in weeks without joint pain and stiffness (okay, maybe just a little, but much improved)!
I went to do my blood work and there was no line!
I went to the hospital mail room to mail out my perscription drug claims and caught the mail man before he left with the outgoing mail for the day!
I got out of the parking structure within the grace period and didn't have to pay!
Today is shaping up to be a good day! What I've learned is that I have to make the most of these good days because I never know how I'm going to feel tomorrow...
- a little lupie -
Saturday, December 29, 2012
Friday, December 28, 2012
My View Series #1
I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.
- a little lupie -
*****
It's going to be a fight, but you will find a strength inside you that you never thought you could have. When doors to life and normalcy shut, fight like hell to find a window. If you keep fighting back, lupus will never be able to take over your life.—Charlene
- a little lupie -
Sunday, December 16, 2012
Tis the Season...
...for lupus flares :(
I think I've mentioned before, but the holidays seem to be the time for my lupus to flare. It may have to do with the weather and the additional flurry of activities. I don't feel particularly stressed, but I do have a lot more going on, both at work and at home.
This year, I am also dealing with being off of some of my medications. I'm no longer taking prednisone, azathioprine, and procrit. Some of the symptoms I've noticed are joint pain, fatigue, and mouth sores. For the past week, my eyes have felt strained and I've been getting bad headaches...but I'm not sure if that is due to the lupus or not.
I had another outdoor service project that I had to go to for work on Friday. I was dreading it all month. The service project is "mandatory" and while I probably could get a medical exemption, I haven't decided how "public" I want to be with my condition. I don't want people to define me by my condition and I don't want people to feel sorry for me. At the same time, I do want people to understand why I may not be full of energy and excited to do these types of activities. So, I went to the service project on Friday but tried to lay low and stay in the shade. There were a few others doing the same, and I've learned not to judge people as being "lazy" or "unmotivated," because I never know what their story is. Sometimes I do wonder if others are dealing with the same thing as I am.
I did get a few mosquito bites that are large and painful. As I've mentioned in a previous post, I'm wondering if my extreme reaction to mosquito bites is related to lupus. I think I'll ask Rheumy about this at my next appointment.
I don't get the typical malar rash from the sun that other lupies get, but I am wondering if I have some kind of photosensitivity. The sun seems to zap my energy and can make the malaise kick-in. When I got home from the service project, I took a shower and knocked out at about 4:30 pm. I slept all the way until 8:30 am the next morning and still felt tired. I forced myself out of bed to eat and move around but was dealing with a headache that only got worse with bright lights. I decided to head in early again that evening and finally feel back to normal today.
I've kind of been in denial about this flare because I was doing so well. I was just about to hit my 6-month remission milestone, and I'd hate to have to restart my clock again. I feel like it is passing, so I'll see what Rheumy says when I meet with him in a couple weeks.
- a little lupie -
I think I've mentioned before, but the holidays seem to be the time for my lupus to flare. It may have to do with the weather and the additional flurry of activities. I don't feel particularly stressed, but I do have a lot more going on, both at work and at home.
This year, I am also dealing with being off of some of my medications. I'm no longer taking prednisone, azathioprine, and procrit. Some of the symptoms I've noticed are joint pain, fatigue, and mouth sores. For the past week, my eyes have felt strained and I've been getting bad headaches...but I'm not sure if that is due to the lupus or not.
I had another outdoor service project that I had to go to for work on Friday. I was dreading it all month. The service project is "mandatory" and while I probably could get a medical exemption, I haven't decided how "public" I want to be with my condition. I don't want people to define me by my condition and I don't want people to feel sorry for me. At the same time, I do want people to understand why I may not be full of energy and excited to do these types of activities. So, I went to the service project on Friday but tried to lay low and stay in the shade. There were a few others doing the same, and I've learned not to judge people as being "lazy" or "unmotivated," because I never know what their story is. Sometimes I do wonder if others are dealing with the same thing as I am.
I did get a few mosquito bites that are large and painful. As I've mentioned in a previous post, I'm wondering if my extreme reaction to mosquito bites is related to lupus. I think I'll ask Rheumy about this at my next appointment.
I don't get the typical malar rash from the sun that other lupies get, but I am wondering if I have some kind of photosensitivity. The sun seems to zap my energy and can make the malaise kick-in. When I got home from the service project, I took a shower and knocked out at about 4:30 pm. I slept all the way until 8:30 am the next morning and still felt tired. I forced myself out of bed to eat and move around but was dealing with a headache that only got worse with bright lights. I decided to head in early again that evening and finally feel back to normal today.
I've kind of been in denial about this flare because I was doing so well. I was just about to hit my 6-month remission milestone, and I'd hate to have to restart my clock again. I feel like it is passing, so I'll see what Rheumy says when I meet with him in a couple weeks.
- a little lupie -
Sunday, November 4, 2012
Update
Okay, I am horrible at updating these days, but that is a good thing! When I first started this blog, I wrote regularly because lupus was always on my mind. These days, it is something that I keep in the back of my mind, but I've learned to manage and live with.
In my last post, I mentioned that I have been gaining weight like crazy. I checked my thyroid level and it is in the normal range, so that's likely not the cause. I'm trying to make an effort to "get moving" more. Now that the weather has cooled down a little, we're taking our dog walking after work more often. Nothing too strenuous, but it gets the blood flowing a bit.
I've been tapering down my Prednisone for the past few months and have been completely off of it as of October 1st. I had a little joint pain and fatigue the first couple days, but my body has adjusted and I am doing well. My blood test last week showed that I am stable. My next visit with Rheumy is in two months, and if I remain stable, he'll give us the all-clear to start trying for a baby. I'm not sure if we're ready for that yet, but it is nice to have one hurdle out of the way.
- a little lupie -
In my last post, I mentioned that I have been gaining weight like crazy. I checked my thyroid level and it is in the normal range, so that's likely not the cause. I'm trying to make an effort to "get moving" more. Now that the weather has cooled down a little, we're taking our dog walking after work more often. Nothing too strenuous, but it gets the blood flowing a bit.
I've been tapering down my Prednisone for the past few months and have been completely off of it as of October 1st. I had a little joint pain and fatigue the first couple days, but my body has adjusted and I am doing well. My blood test last week showed that I am stable. My next visit with Rheumy is in two months, and if I remain stable, he'll give us the all-clear to start trying for a baby. I'm not sure if we're ready for that yet, but it is nice to have one hurdle out of the way.
- a little lupie -
Wednesday, September 12, 2012
Not so Little Lupie
I have been really bad at updating. I am still doing well. My blood counts continue to remain stable and somewhat normal (low side of normal). I am down to 1 mg of prednisone daily, but despite that, I am gaining weight like crazy!!! I've been gaining about 2 pounds a month, and I feel like I haven't been eating more or exercising less than normal. I've tried to make smarter choices when eating and even went to a crossfit class (where I DIED), but the scale keeps going up. I brought this up to Rheumy at my last visit and we're going to check my thyroid to see if my medication needs to be adjusted.
Other than that, all is good in lupie land. I still don't feel like I have tons of energy, but when I look back at how I felt a year ago, I am 1000% better. It is hard to relate to how fatigued I was back then...even though I went through it, I have a hard time remembering exactly how debilitating it was. I'm thankful to be able to make it through a day of work now and even have energy to run some errands or go out to dinner afterwards. I still have to be careful not to overdo it and try to keep a day free to just relax and recuperate.
In case anyone still reads this, I'll try to be better about updating...
- a (not so) little lupie -
Other than that, all is good in lupie land. I still don't feel like I have tons of energy, but when I look back at how I felt a year ago, I am 1000% better. It is hard to relate to how fatigued I was back then...even though I went through it, I have a hard time remembering exactly how debilitating it was. I'm thankful to be able to make it through a day of work now and even have energy to run some errands or go out to dinner afterwards. I still have to be careful not to overdo it and try to keep a day free to just relax and recuperate.
In case anyone still reads this, I'll try to be better about updating...
- a (not so) little lupie -
Thursday, August 23, 2012
Wednesday, July 18, 2012
Still doing good!
I didn't update after my last Rheumy visit, but he agreed that I am doing well. The ds-DNA level is an indicator of how active lupus is, and it is much, much lower than it was a year ago. It isn't down to "normal" levels, but Rheumy said that since I am feeling good and have no other symptoms, there wouldn't be much benefit for me to increase medication in order to get these numbers down. In fact, it would probably increase side effects. We are going to start weening off the Prednisone now and continue monitoring to see how that goes. The good news is that I am considered "in remission" and I can start the 6 month clock for time in remission before trying to get pregnant.
In not so good news, I went to see Hemey today and think it is time to get a new doctor. I waited in his office for an hour and a half on my lunch break then saw him for 2 minutes as he looked at my blood work, told me I was too healthy for a shot, then told me to come back in a few weeks. Since my blood work has been consistently stable, I asked if I could come in once a month instead of every other week. He said one month this time (probably since he is going to be on vacation for the next couple weeks), but that I shouldn't count on it because I could go downhill at any time. I explained to him that it is difficult for me to take so much time off of work (his office hours are 8:30 am - 4:00 pm, with the last appointment at 3:45), but then he started lecturing me about how I have to make my health a priority. I said I know, but it is still hard to take off of work so often. He then told me again how important it is to make my health a priority...especially because I didn't before. WTF?! As if it is my fault I have lupus? Since I was diagnosed I have been very diligent about taking care of myself and following doctors orders, and now he tells me I don't prioritize my health because I don't want to pay him to see me for 2 minutes every other week to read my blood test results?! Anyways, I am not impressed with his level of care or bedside manner, so at my next Rheumy appointment I am going to ask for another referral. Sorry, just had to vent...
- a little lupie -
In not so good news, I went to see Hemey today and think it is time to get a new doctor. I waited in his office for an hour and a half on my lunch break then saw him for 2 minutes as he looked at my blood work, told me I was too healthy for a shot, then told me to come back in a few weeks. Since my blood work has been consistently stable, I asked if I could come in once a month instead of every other week. He said one month this time (probably since he is going to be on vacation for the next couple weeks), but that I shouldn't count on it because I could go downhill at any time. I explained to him that it is difficult for me to take so much time off of work (his office hours are 8:30 am - 4:00 pm, with the last appointment at 3:45), but then he started lecturing me about how I have to make my health a priority. I said I know, but it is still hard to take off of work so often. He then told me again how important it is to make my health a priority...especially because I didn't before. WTF?! As if it is my fault I have lupus? Since I was diagnosed I have been very diligent about taking care of myself and following doctors orders, and now he tells me I don't prioritize my health because I don't want to pay him to see me for 2 minutes every other week to read my blood test results?! Anyways, I am not impressed with his level of care or bedside manner, so at my next Rheumy appointment I am going to ask for another referral. Sorry, just had to vent...
- a little lupie -
Tuesday, June 19, 2012
Doing Better
I got my lab results in the mail today. I don't go see Rheumy until Friday, but he had me take the labs a week before since some of the tests he ordered would take longer than the normal CBC. One of the tests he ordered was the Anti-dsDNA test, which is a specific test for lupus. If these antibodies are present, it is a strong indication of lupus. When I was first diagnosed, Dr. C ordered the test and the result came back as ">300". A result of <=4 is considered negative, 5-9 indeterminate, and >=10 is positive. Needless to say, >300 was a huge indicator. The lab results I just got today show my Anti-dsDNA level at 29, which is way lower than it was back last January. I'll have to ask Rheumy about what that means...perhaps it is lower because I'm not flaring?
I don't want to jinx it, but my other lab results look good too! My White Blood Cell Count is 3.9, which is considered in the normal range (3.8-10.8). My Red Blood Cell Count is still a little low at 3.3, but my Hemoglobin is 12.1! That is the highest it has been since my diagnosis, and it is considered in the normal range (12.0-16.0). I have been feeling a lot better, so I'm glad my lab results are reflective of that. My sedimentation rate is still a little high, indicating some inflammation, and there are trace amounts of blood in my urine, so that is something we'll need to continue to monitor.
I have a sore in my mouth under my tongue which has been bothering me for the past few days. It is a symptom of lupus, so I'll let Rheumy know about it on Friday. Other than that, I have been doing well. I hope Rheumy agrees!
- a little lupie -
I don't want to jinx it, but my other lab results look good too! My White Blood Cell Count is 3.9, which is considered in the normal range (3.8-10.8). My Red Blood Cell Count is still a little low at 3.3, but my Hemoglobin is 12.1! That is the highest it has been since my diagnosis, and it is considered in the normal range (12.0-16.0). I have been feeling a lot better, so I'm glad my lab results are reflective of that. My sedimentation rate is still a little high, indicating some inflammation, and there are trace amounts of blood in my urine, so that is something we'll need to continue to monitor.
I have a sore in my mouth under my tongue which has been bothering me for the past few days. It is a symptom of lupus, so I'll let Rheumy know about it on Friday. Other than that, I have been doing well. I hope Rheumy agrees!
- a little lupie -
Monday, June 11, 2012
A Belated Happy World Lupus Day
I really have been neglecting my lupus updates! Not only that, I have been neglecting checking in on some of the other lupies that I follow through their blogs. I just read a post from Cori and realized that I missed World Lupus Day on May 10.
Check out her post here: http://corislupusupdates.blogspot.com/2012/05/what-world-lupus-day-lupus-awareness.html
I relate to a lot of what Cori says in this post. I disclose and vent a lot about my lupus situation on this blog, but I don't go advertising it or my situation on Facebook or in daily interactions. My family and close friends know about my condition and will occasionally ask how I am doing, but I never know if they want to know more than just "fine" or "good". This blog gives me the opportunity to just let everything out and people can choose to read it or not. For those of you who do read, please know that I appreciate that you are interested in learning more about lupus. This has definitely been a learning experience for me -- not only in learning about the disease itself, but also in how to cope and to be more empathetic to others who are dealing with what life has dealt them. If you ever have questions or want to know more, feel free to ask (or leave a comment)...I'm happy to discuss!
- a little lupie -
Check out her post here: http://corislupusupdates.blogspot.com/2012/05/what-world-lupus-day-lupus-awareness.html
I relate to a lot of what Cori says in this post. I disclose and vent a lot about my lupus situation on this blog, but I don't go advertising it or my situation on Facebook or in daily interactions. My family and close friends know about my condition and will occasionally ask how I am doing, but I never know if they want to know more than just "fine" or "good". This blog gives me the opportunity to just let everything out and people can choose to read it or not. For those of you who do read, please know that I appreciate that you are interested in learning more about lupus. This has definitely been a learning experience for me -- not only in learning about the disease itself, but also in how to cope and to be more empathetic to others who are dealing with what life has dealt them. If you ever have questions or want to know more, feel free to ask (or leave a comment)...I'm happy to discuss!
- a little lupie -
Sunday, June 10, 2012
No News is Good News!
I know it's been a long time since I've updated, and it is because I have been busy living life! My hemoglobin levels over the past month have been just above 11. That means that I don't qualify for the Procrit shot because according to the insurance companies, I'm "too healthy." I'm still not in the normal range (which for women would be 12-15), but I do feel a whole lot better than when I was in the 9-10 range. I have energy to get through a full day of work and go out for dinner or run errands afterwards. I no longer go to bed at 8. I'm able to do things on the weekend other than recuperate from the work week. I'm finally beginning to feel "normal"! I just need to be careful to not over-extend myself.
I have also stopped taking the azathioprine in hopes of having the option of getting pregnant in the next few years. In order to aid with me getting off the medication, we've increased my Prednisone dose to 5 mg, which is still considered a low dosage. This may be why my hemoglobin levels, red blood cell, and white blood cell counts have all improved -- they are all at the highest levels since my lupus diagnosis. Hopefully they will remain where they are as I ween off the Prednisone. Technically, I could continue taking Prednisone while pregnant, but of course, the less medication the better.
Rheumy is running a few additional lab tests on me this week to check for antibodies that may affect me and/or baby if I get pregnant. I see him next week for the results, and I hope I have more good news to share!
- a little lupie
P.S. For those who read my last couple of posts and thought I was pregnant, sorry! I forgot about the backwards chronological aspect of blog posts and now realize that I should have put my "not pregnant!" disclaimer on all the pregnancy series posts! I'm not done with the series yet, but I have been slacking because the next post in the series ( how lupus affects pregnancy) is the most complex aspect and will require more research. It will be coming, though!
P.P.S. Sorry for any typos or inadvertent auto-corrects! I am trying to become more mobile-saavy and typed this whole thing out on my phone! Okay, maybe it has less to do with becoming mobile-savvy and more to do with me being too lazy to go get my computer :)
I have also stopped taking the azathioprine in hopes of having the option of getting pregnant in the next few years. In order to aid with me getting off the medication, we've increased my Prednisone dose to 5 mg, which is still considered a low dosage. This may be why my hemoglobin levels, red blood cell, and white blood cell counts have all improved -- they are all at the highest levels since my lupus diagnosis. Hopefully they will remain where they are as I ween off the Prednisone. Technically, I could continue taking Prednisone while pregnant, but of course, the less medication the better.
Rheumy is running a few additional lab tests on me this week to check for antibodies that may affect me and/or baby if I get pregnant. I see him next week for the results, and I hope I have more good news to share!
- a little lupie
P.S. For those who read my last couple of posts and thought I was pregnant, sorry! I forgot about the backwards chronological aspect of blog posts and now realize that I should have put my "not pregnant!" disclaimer on all the pregnancy series posts! I'm not done with the series yet, but I have been slacking because the next post in the series ( how lupus affects pregnancy) is the most complex aspect and will require more research. It will be coming, though!
P.P.S. Sorry for any typos or inadvertent auto-corrects! I am trying to become more mobile-saavy and typed this whole thing out on my phone! Okay, maybe it has less to do with becoming mobile-savvy and more to do with me being too lazy to go get my computer :)
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