of my last blog post, where I talk about my skin clearing up and feeling better. Not so anymore :( My skin has really gone off the deep end, my face, neck chest, belly and back are all covered with angry, red, painful rash. Man, it hurts. I can't really find any cream or anything to make it feel better either, though some salves have helped a bit.
I have added another doctor to my list, this one is a Holistic Dermatologist named Dr. Dattner. I had an appointment with him a couple weeks ago, and I'm hopeful that he will help. He is helping me deal with the disease from a nutritional perspective and we're working on decreasing the inflammation using supplements and eventually some dietary changes.
But in the meantime, I'm coming here to whine. It hurts, it really does. And I want to itch it...which makes it hurt more. It feels like bad sunburn all over. Totally sucks.
I'm still on the Prednisone, have gradually tapered down to 8mg (going down a mg a month), and am also still on the Plaquenil. Besides the skin, I feel fine, no aches and pains. My hair is even coming back somewhat, so that's great.
I may have to change the name of this blog though...Dr. W told me at my appointment that I don't technically have Lupus, rather I have Mixed Connective Tissue Disease. This is most likely good news, MCTD has a lower chance of effecting my internal organs, so that's a big relief. It's even more amorphous than Lupus though, so it just makes is seem difficult to fix. She also said I have indicators for Sjogren's, so that can jump on the list, too.
Mentally I'm feeling pretty crappy these days. I've had to accept the fact that I just can't get as much done as I used to. Spoke to sweet hubby and basically told him we're just going to have to deal until I start feeling better. All this on top of work and Christmas right around the corner, arg, lots going on.
Tuesday, December 9, 2008
Wednesday, September 3, 2008
feeling somewhat better
I went to see Dr. W last week, and we agreed it made sense for me to go on some stronger drugs. I have been in some fairly bad pain for over a month, and it's not really getting better. So I am now on a short course of prednisone.
I started with 20 mg (last time I was on it I started on 40 mg and was a crazy person). This time, the side effects aren't as bad, but it didn't make my pain go away completely either. Still some pain in the mornings, but by afternoon, I'm feeling almost no pain (whoo hoo!).
I've been on the pred for 7 days and am now on 10mg. I'm feeling pretty good, though my knuckles and elbows still hurt a bit.
I am happy with working with the new doc and hoping that things will get under control soon. My skin is MUCH better. My face is almost clear, and the rashes on my neck, chest and arms has faded a lot. The newer rash on my legs is not great, but at least my legs are easy to hide under a pair of pants!
I've still got some bald-ish spots on the top of my head, but bit the bullett and got a haircut at the barber's when Simon had his cut (see Simon's blog for details: http://sweetsimonsays.blogspot.com/). He cut it a bit too short, but not too bad.
One lovely thing about being on the prednisone is now I can get stuff done! I have the energy to update my blogs, post photos, get 2 year old paperwork done, huzzah! Also, the crazy hunger it causes isn't that big a deal this time because I'm getting too skinny anyways...ah, lupus, you crazy disease you!
Saturday, August 23, 2008
ouch, lupus hurts!
so, these past few weeks have basically s*cked. I have been in pretty intense pain much of the time, most severe in the morning and the evening.
I've been taking 3 ibuprophen 3 times a day, and it really hasn't been doing much...though I guess it's doing something, because when it's wearing off I can really tell.
The pain has gradually been getting worse and worse, in my fingers, wrists, elbows, shoulders and back...and my ankles are starting to join in the fun as well.
Rolling over in bed at night, especially with my sweet son in the mix, is a big challenge. Lifting 30 lb Simon is getting to be a challenge, I sortof have to lift him with my wrists rather than my hands...
BUT do not despair...hope is on the way in the form of...
acupuncture!
I had lower back pain for years - from the time I was in high school until my 30's. I'd tried chiropracty, physical therapy, exercise...but nothing worked until the acupuncture. And it wasn't a mind over matter thing, either, I really didn't think it was going to work until one day I woke up and it dawned on me that I was pain free - for the first time in YEARS.
So I started up with acupuncture again. I had been getting acupuncture a few months ago, but stopped because it didn't seem to be doing anything and it was a burden financially.
Now that we're in a better place money-wise, and my pain was getting so bad, I decided to give it another try. I figured it was a better path than the "adding more and more drugs" path.
I went to a session on Wed night, and didn't notice much relief, though I may have had a little more energy the next day or so. I went again on Friday morning.
Friday afternoon, I looked at the clock and noticed it was 4pm...and I hadn't taken my afternoon does of ibuprophen yet, hadn't even noticed that I needed it. Recently, I'd started looking at the clock around 1pm or so, waiting for 2pm so I could take my pills. But the pain had diminished so 2pm came and went without me even noticing.
So that's where I stand now. I still have painful joints, but at least it's moving in a feeling better direction rather than the worse-and-worse direction. And the acupuncture worked fairly quickly, so hopefully with additional treatments, it will continue to make me feel better.
I have any appointment with Dr. W (rheumatologist) on Wednesday, we'll see what she thinks.
I've been taking 3 ibuprophen 3 times a day, and it really hasn't been doing much...though I guess it's doing something, because when it's wearing off I can really tell.
The pain has gradually been getting worse and worse, in my fingers, wrists, elbows, shoulders and back...and my ankles are starting to join in the fun as well.
Rolling over in bed at night, especially with my sweet son in the mix, is a big challenge. Lifting 30 lb Simon is getting to be a challenge, I sortof have to lift him with my wrists rather than my hands...
BUT do not despair...hope is on the way in the form of...
acupuncture!
I had lower back pain for years - from the time I was in high school until my 30's. I'd tried chiropracty, physical therapy, exercise...but nothing worked until the acupuncture. And it wasn't a mind over matter thing, either, I really didn't think it was going to work until one day I woke up and it dawned on me that I was pain free - for the first time in YEARS.
So I started up with acupuncture again. I had been getting acupuncture a few months ago, but stopped because it didn't seem to be doing anything and it was a burden financially.
Now that we're in a better place money-wise, and my pain was getting so bad, I decided to give it another try. I figured it was a better path than the "adding more and more drugs" path.
I went to a session on Wed night, and didn't notice much relief, though I may have had a little more energy the next day or so. I went again on Friday morning.
Friday afternoon, I looked at the clock and noticed it was 4pm...and I hadn't taken my afternoon does of ibuprophen yet, hadn't even noticed that I needed it. Recently, I'd started looking at the clock around 1pm or so, waiting for 2pm so I could take my pills. But the pain had diminished so 2pm came and went without me even noticing.
So that's where I stand now. I still have painful joints, but at least it's moving in a feeling better direction rather than the worse-and-worse direction. And the acupuncture worked fairly quickly, so hopefully with additional treatments, it will continue to make me feel better.
I have any appointment with Dr. W (rheumatologist) on Wednesday, we'll see what she thinks.
Friday, August 8, 2008
the current "state of the lupus"
In my previous post, I shared how I have found a new doctor that I am happy with. Well, that's the good news. The not-so-great news is that I feel like cr*p.
I have two major issues going on. One is related to going off the plaquenil for about a month, and the other is not.
First, the aches and pains. Ummm, ow? I'm up to 3 ibuprofen 3 times a day now (that's a ton for me). My shoulders, neck and back (and elbows??) hurt a lot in the morning, are so-so all day long and then hurt a lot at night again. It makes lifting my sweet son awfully tough.
The other issue are the two rashes. I have two distinct rashes, one that came back when I stopped taking the plaquenil, and one that has been consistently there for months now.
There is a rash on my legs...it's sporadic dots (look like small bug bites) on my thighs and a bunch on the back of both my calves. It doesn't really bother me too much, doesn't hurt etc.
Then the *other* rash. This has been the bane of my existence for a while now. It finally has calmed down on my face, so now I have just mildly red skin all over my face. But my neck and chest are covered in red dry rash. And it itches and hurts. My arms are also covered from my hands up to my t-shirt line. This is how I finally accepted the fact that the sun was causing this stuff. Every exposed area is covered in nasty red scaly stuff :( Basically, it's like all the skin on my arms died and peeled off and left dry scaly skin behind (gross, I know, sorry, but it's what is going on).
This arms/face/neck rash is really depressing. I also have hair loss, so I wear a bandanna every day. I've tried lotions and creams, anti-itch and moisturizing, natural and not natural, for the rash, but nothing seems to do any good. It's really frustrating, annoying, painful, and a also embarrassing.
My knuckles are a bit swollen, and for a couple weeks, the fatigue in the evening was pretty bad. Not so much fatigue now, I'm not sure if the plaquenil is starting to kick in, or if it's the ibuprofen or what, but I'm glad that's calmed down.
I'm considering calling Dr. W and seeing if she recommends taking anything stronger than the ibuprofen, or if I should try and tough it out until the plaquenil starts working (it takes a few months to kick in, it took around 5 months last time).
So that's pretty much it for now. Basically feeling crappy and crossing my fingers that the drugs will start working soon. The rash really sucks, it's so ugly.
One bit of good news is that Dr. W mentioned that lupus usually sticks to the one manifestation it shows itself in in the beginning, so since mine is skin and aches and pains, it probably wont jump over and start affecting the internal organs. That was a relief to hear, reassuring.
I've started doing the qi gong again, and hope to add acupuncture soon, too. I'm also seeing a counselor to try and help deal with all this junk.
Hoping to feel better soon!
I have two major issues going on. One is related to going off the plaquenil for about a month, and the other is not.
First, the aches and pains. Ummm, ow? I'm up to 3 ibuprofen 3 times a day now (that's a ton for me). My shoulders, neck and back (and elbows??) hurt a lot in the morning, are so-so all day long and then hurt a lot at night again. It makes lifting my sweet son awfully tough.
The other issue are the two rashes. I have two distinct rashes, one that came back when I stopped taking the plaquenil, and one that has been consistently there for months now.
There is a rash on my legs...it's sporadic dots (look like small bug bites) on my thighs and a bunch on the back of both my calves. It doesn't really bother me too much, doesn't hurt etc.
Then the *other* rash. This has been the bane of my existence for a while now. It finally has calmed down on my face, so now I have just mildly red skin all over my face. But my neck and chest are covered in red dry rash. And it itches and hurts. My arms are also covered from my hands up to my t-shirt line. This is how I finally accepted the fact that the sun was causing this stuff. Every exposed area is covered in nasty red scaly stuff :( Basically, it's like all the skin on my arms died and peeled off and left dry scaly skin behind (gross, I know, sorry, but it's what is going on).
This arms/face/neck rash is really depressing. I also have hair loss, so I wear a bandanna every day. I've tried lotions and creams, anti-itch and moisturizing, natural and not natural, for the rash, but nothing seems to do any good. It's really frustrating, annoying, painful, and a also embarrassing.
My knuckles are a bit swollen, and for a couple weeks, the fatigue in the evening was pretty bad. Not so much fatigue now, I'm not sure if the plaquenil is starting to kick in, or if it's the ibuprofen or what, but I'm glad that's calmed down.
I'm considering calling Dr. W and seeing if she recommends taking anything stronger than the ibuprofen, or if I should try and tough it out until the plaquenil starts working (it takes a few months to kick in, it took around 5 months last time).
So that's pretty much it for now. Basically feeling crappy and crossing my fingers that the drugs will start working soon. The rash really sucks, it's so ugly.
One bit of good news is that Dr. W mentioned that lupus usually sticks to the one manifestation it shows itself in in the beginning, so since mine is skin and aches and pains, it probably wont jump over and start affecting the internal organs. That was a relief to hear, reassuring.
I've started doing the qi gong again, and hope to add acupuncture soon, too. I'm also seeing a counselor to try and help deal with all this junk.
Hoping to feel better soon!
yes, moved on to another doctor...
so, my most recent posts featured a holistic doctor, Dr. F. After working with him for about a month and a half, I finally decided that it wasn't really working for me.
I did have another appointment with him where we went over my treatment plan. I left his office with over 20 (yes *twenty*) different nutriceuticals & supplements to take, as well as some Chinese herbal tea. He wanted me off the Plaquenil, but didn't give me any guidance about stopping the meds. He also put me on an *extremely* restricted diet - no salt, no sugar etc. - though I believe he recommends this diet for all his patients.
I took the supplements twice a day for a few weeks, but started feeling worse and worse, I'm assuming because I stopped taking the Plaquenil. Back were the aches and pains, back was the early-evening low grade fever. And back came rash #2, primarily on my legs (more on that later, I've determined I have two separate skin issues going on...).
Now, I was not expecting a miracle cure, and I realize that I only gave this treatment plan a very short trial. I didn't give up on this treatment because I thought it wasn't working, but I decided I didn't have enough confidence in Dr. F to continue with him as my primary doctor. I finally decided that I just didn't feel comfortable enough with how we were communicating. I needed a lot more guidance concerning the restricted diet and stopping the plaquenil. Also, he didn't mention anything about staying out of the sunlight (I have finally accepted the fact that I am allergic to the sun...more on this later, also). My mother was extremely concerned about the fact that he didn't mention anything about monitoring the health of my kidneys and internal organs.
So.
I decided to try a new doctor (shocker!).
Although I do feel like I'm doctor hopping a bit, there have been valid reasons to leave the doctors that I have left. And as my mom reminds me, this is the first year of the disease, and we're still feeling our way around this whole thing.
One of the doctors I had been considering seeing before was Dr. Susan Ward of The Consciousness Institute, but it's about an hour south west of Philadelphia, so it's around 2 hours from my house. I originally didn't see her because of the distance, but at this point, the distance didn't seem to matter as much, I really needed to find a doctor whose healing philosophy meshed with my own.
I had a bit of an epiphany and I was able to step back and look at my actions with some perspective. I recalled reading posts in my online mothering forum, and thinking "wow, these mom's really need to add some common sense to their thinking". Well, so did I.
Although I would love the pursue a natural treatment plan, the bottom line is -- I am sick. There is medication available that will help me, even though nobody really knows why. But I am sick and the meds will help, therefore, I should take the meds. It's not like I am taking these pills for no reason, or taking a zillion pills. So I finally faced up to this fact, thereby allowing myself to go back to a rheumatologist, rather than a naturopath or other doctor who was not going to have me on plaquenil.
So, back to Dr. Ward. The first appointment went very well. She is thorough, thoughtful, willing to answer questions...and she is supportive of alternative therapies in addition to the traditional treatment (she recommends meditation and acupuncture, aw well as natural supplements). So far she has been conservative with the meds, which is really what I'm looking for. I was looking for a doctor that would really look at me as the patient, rather than just prescribe meds based on a generic treatment plan (this is a similar experience I had with my son during his first year - please look at my baby, not just a growth chart!!).
So besides the fact that she is two hours away, Dr. W seems to be the doc for me. She did recommend me finding a rheumy that was closer and associated with a University hospital, in case of emergency, and I'm working on that. There's no real hurry because I have seen Dr. Buyon in NYC and she is associated with NYU hospital.
It is a big relief to have found a doctor who I feel is on the same page as me. Now hopefully we will get my health moving in the right direction!
I did have another appointment with him where we went over my treatment plan. I left his office with over 20 (yes *twenty*) different nutriceuticals & supplements to take, as well as some Chinese herbal tea. He wanted me off the Plaquenil, but didn't give me any guidance about stopping the meds. He also put me on an *extremely* restricted diet - no salt, no sugar etc. - though I believe he recommends this diet for all his patients.
I took the supplements twice a day for a few weeks, but started feeling worse and worse, I'm assuming because I stopped taking the Plaquenil. Back were the aches and pains, back was the early-evening low grade fever. And back came rash #2, primarily on my legs (more on that later, I've determined I have two separate skin issues going on...).
Now, I was not expecting a miracle cure, and I realize that I only gave this treatment plan a very short trial. I didn't give up on this treatment because I thought it wasn't working, but I decided I didn't have enough confidence in Dr. F to continue with him as my primary doctor. I finally decided that I just didn't feel comfortable enough with how we were communicating. I needed a lot more guidance concerning the restricted diet and stopping the plaquenil. Also, he didn't mention anything about staying out of the sunlight (I have finally accepted the fact that I am allergic to the sun...more on this later, also). My mother was extremely concerned about the fact that he didn't mention anything about monitoring the health of my kidneys and internal organs.
So.
I decided to try a new doctor (shocker!).
Although I do feel like I'm doctor hopping a bit, there have been valid reasons to leave the doctors that I have left. And as my mom reminds me, this is the first year of the disease, and we're still feeling our way around this whole thing.
One of the doctors I had been considering seeing before was Dr. Susan Ward of The Consciousness Institute, but it's about an hour south west of Philadelphia, so it's around 2 hours from my house. I originally didn't see her because of the distance, but at this point, the distance didn't seem to matter as much, I really needed to find a doctor whose healing philosophy meshed with my own.
I had a bit of an epiphany and I was able to step back and look at my actions with some perspective. I recalled reading posts in my online mothering forum, and thinking "wow, these mom's really need to add some common sense to their thinking". Well, so did I.
Although I would love the pursue a natural treatment plan, the bottom line is -- I am sick. There is medication available that will help me, even though nobody really knows why. But I am sick and the meds will help, therefore, I should take the meds. It's not like I am taking these pills for no reason, or taking a zillion pills. So I finally faced up to this fact, thereby allowing myself to go back to a rheumatologist, rather than a naturopath or other doctor who was not going to have me on plaquenil.
So, back to Dr. Ward. The first appointment went very well. She is thorough, thoughtful, willing to answer questions...and she is supportive of alternative therapies in addition to the traditional treatment (she recommends meditation and acupuncture, aw well as natural supplements). So far she has been conservative with the meds, which is really what I'm looking for. I was looking for a doctor that would really look at me as the patient, rather than just prescribe meds based on a generic treatment plan (this is a similar experience I had with my son during his first year - please look at my baby, not just a growth chart!!).
So besides the fact that she is two hours away, Dr. W seems to be the doc for me. She did recommend me finding a rheumy that was closer and associated with a University hospital, in case of emergency, and I'm working on that. There's no real hurry because I have seen Dr. Buyon in NYC and she is associated with NYU hospital.
It is a big relief to have found a doctor who I feel is on the same page as me. Now hopefully we will get my health moving in the right direction!
Tuesday, June 17, 2008
the results are in...
After having tons of blood taken and submitted various other bodily fluids for testing, the results are in. I went to an appointment last week to meet with Dr. F to go over the test results. Mom accompanied me to the appointment for moral support. Wow, did I leave that appointment with mixed feelings!
I have been able to open my mind to alternative treatments over the past 10 years. I have had success with acupuncture, chinese herbs, meditation and yoga, and have had some negative experiences with traditional Western medicine. My mother doesn't believe in taking a lot of medication either, but her feet are both firmly on the ground (where my head may be up among the clouds a bit...).
Dr. F presented us with a lengthy list of test results, and as he walked through them he jotted down supplements that he felt would work to remedy the problems he came across. We ended up with a pretty big list, and that was just the beginning.
We started discussing my food sensitivities and started off with a bang - "Do you like cherries?" he asked. Mom and I look at each other with wide eyes, as not 5 minutes earlier in the waiting room we had just been raving about how much we loved cherries and sharing our stories of the times we had stopped at side-of-the-road fruit stands and gorged on entire bags of cherries. "Well, yes, I do like cherries" I reply. "Well, you are extremely allergic" was the reply.
*shock*
I was prepared to come to this appointment and hear that I should cut our refined sugar, dairy, fried and processed foods etc. But cherries? Ouch. That's just mean.
Dr. F continued to go through the results, and he found some serious issues in my gut. Words like "fungus" and "parasite" were mentioned. Joy. The good news is that, although the stomach issues were fairly severe, they are an obvious and treatable problem, so fixing them could be a big step in the right direction.
So, that pretty much sums up the appointment - today we were just reviewing the results, we'll discuss the treatment plan at the next appointment. I was pretty shell shocked, and mom and I went out to the car to talk things over.
I was pretty floored by all of this. It really felt like I was diagnosed with a whole bunch of new stuff on top of the lupus and I just wasn't in the mood to hear that I was *more* sick! But after I had a chance to sleep on it, and talk it over with a few folks, I started to wrap my brain around it.
I'm at a fork in the road, and although turning back in 6 months or a year is not out of the question, choosing this alternative path is a fairly weighty decision. I'm the type of person who likes things in black and white, so it's really hard for me to deal with all of this gray.
I need to set up an appointment to go over the treatment plan with Dr. F in the next week or so. I'm hopeful that I'm beginning a path to better health.
I have been able to open my mind to alternative treatments over the past 10 years. I have had success with acupuncture, chinese herbs, meditation and yoga, and have had some negative experiences with traditional Western medicine. My mother doesn't believe in taking a lot of medication either, but her feet are both firmly on the ground (where my head may be up among the clouds a bit...).
Dr. F presented us with a lengthy list of test results, and as he walked through them he jotted down supplements that he felt would work to remedy the problems he came across. We ended up with a pretty big list, and that was just the beginning.
We started discussing my food sensitivities and started off with a bang - "Do you like cherries?" he asked. Mom and I look at each other with wide eyes, as not 5 minutes earlier in the waiting room we had just been raving about how much we loved cherries and sharing our stories of the times we had stopped at side-of-the-road fruit stands and gorged on entire bags of cherries. "Well, yes, I do like cherries" I reply. "Well, you are extremely allergic" was the reply.
*shock*
I was prepared to come to this appointment and hear that I should cut our refined sugar, dairy, fried and processed foods etc. But cherries? Ouch. That's just mean.
Dr. F continued to go through the results, and he found some serious issues in my gut. Words like "fungus" and "parasite" were mentioned. Joy. The good news is that, although the stomach issues were fairly severe, they are an obvious and treatable problem, so fixing them could be a big step in the right direction.
So, that pretty much sums up the appointment - today we were just reviewing the results, we'll discuss the treatment plan at the next appointment. I was pretty shell shocked, and mom and I went out to the car to talk things over.
I was pretty floored by all of this. It really felt like I was diagnosed with a whole bunch of new stuff on top of the lupus and I just wasn't in the mood to hear that I was *more* sick! But after I had a chance to sleep on it, and talk it over with a few folks, I started to wrap my brain around it.
I'm at a fork in the road, and although turning back in 6 months or a year is not out of the question, choosing this alternative path is a fairly weighty decision. I'm the type of person who likes things in black and white, so it's really hard for me to deal with all of this gray.
I need to set up an appointment to go over the treatment plan with Dr. F in the next week or so. I'm hopeful that I'm beginning a path to better health.
Monday, April 28, 2008
have been on the down low...
I haven't posted in a while because I was waiting to go to my new doctor. Yep, another new one, but this time I'm changing course a bit.
Today I saw Dr. Flowers - an MD who is certified in acupuncture and Chinese herbal medicine. I finally feel like I found a doctor who has the same healing philosophy as me and I am relieved.
Dr. F is quite a character, and a talker :) My appointment today was over 3 hours long - a full health history, lots of discussion of the details of what's going on with me physically and mentally, and a full exam. He is going to do a multitude of tests, including allergy testing for a huge list of foods and chemicals, to see if we can determine what is making my immune system go all wacky.
For the first time in my life I feel like I am going on faith. Faith that this style of medicine, although not a mainstream, traditional approach, is the right path for me. There won't be a magic pill to fix the problem, I'm sure there will be lifestyle changes involved, but it will all be for the better.
I have another appointment in a couple weeks to have blood taken for the main allergy test. After all the results come in, Dr. F will go over the data, and then we will have an appointment to discuss treatment.
Seeking alternative treatment for lupus causes a lot of people to freak out a bit. In my opinion, if I can find a treatment that will not require me to be on medication for the rest of my life, I will be so relieved. If the alternative treatment doesn't work, I will most likely go back on the meds, and the only risk will have been experiencing a few months of additional pain. Being that I've had pain for a good part of my life anyway, this risk is acceptable to me.
Wish me luck on this new leg of my journey to better health! I'll keep you posted...
Today I saw Dr. Flowers - an MD who is certified in acupuncture and Chinese herbal medicine. I finally feel like I found a doctor who has the same healing philosophy as me and I am relieved.
Dr. F is quite a character, and a talker :) My appointment today was over 3 hours long - a full health history, lots of discussion of the details of what's going on with me physically and mentally, and a full exam. He is going to do a multitude of tests, including allergy testing for a huge list of foods and chemicals, to see if we can determine what is making my immune system go all wacky.
For the first time in my life I feel like I am going on faith. Faith that this style of medicine, although not a mainstream, traditional approach, is the right path for me. There won't be a magic pill to fix the problem, I'm sure there will be lifestyle changes involved, but it will all be for the better.
I have another appointment in a couple weeks to have blood taken for the main allergy test. After all the results come in, Dr. F will go over the data, and then we will have an appointment to discuss treatment.
Seeking alternative treatment for lupus causes a lot of people to freak out a bit. In my opinion, if I can find a treatment that will not require me to be on medication for the rest of my life, I will be so relieved. If the alternative treatment doesn't work, I will most likely go back on the meds, and the only risk will have been experiencing a few months of additional pain. Being that I've had pain for a good part of my life anyway, this risk is acceptable to me.
Wish me luck on this new leg of my journey to better health! I'll keep you posted...
Monday, March 24, 2008
the eye doctor ...
Another joy of being a lupus patient is that you have to go to an opthalmologist for regular eye check-ups, because there is a small chance that the plaquenil can mess up your retina.
OK, no biggie, an eye doctor appointment, right? Ummm, yeah biggie! I thought it would be a quick thing, maybe 1/2 hour max, in and out no problem. Well, I was there for two hours!
The field of vision test thingy (the one specifically to test the retina dealio) is a pain.in.the.butt! I had to stick my head in this small white light-box type thing with one eye closed, and for 7+ minutes stare at this little yellow dot...and if I saw any other red dots lighting up, I had to press this Jeopardy-type button...and then I had to do it for the other eye. OK, it might not sound that bad, but it was quite tortuous. This is in addition to the lovely drops the sting into my eyes, the prying open of the eyes etc. etc.
And I have to go through the same mess every 6 months! Wazzap with that? Ugh.
OK, no biggie, an eye doctor appointment, right? Ummm, yeah biggie! I thought it would be a quick thing, maybe 1/2 hour max, in and out no problem. Well, I was there for two hours!
The field of vision test thingy (the one specifically to test the retina dealio) is a pain.in.the.butt! I had to stick my head in this small white light-box type thing with one eye closed, and for 7+ minutes stare at this little yellow dot...and if I saw any other red dots lighting up, I had to press this Jeopardy-type button...and then I had to do it for the other eye. OK, it might not sound that bad, but it was quite tortuous. This is in addition to the lovely drops the sting into my eyes, the prying open of the eyes etc. etc.
And I have to go through the same mess every 6 months! Wazzap with that? Ugh.
Thursday, March 6, 2008
feeling better
It seems that the plaquenil is actually kicking in. I've been on plaquenil for about 5 months now, and am feeling pretty good. Most of the aches and pains are gone, though my pre-lupus pain in my lower back/hip area seems to have come back...so strange.
I'm still having skin issues - lesions on various parts of the body, rash on face, losing hair (hate that one...) - but at least none of these are painful.
I'm pretty much living life as if I don't have lupus. I am trying to simplify if possible, but I've decided that I might as well live my life how I want to while I can...seize the day and all that... :D
I've lost a bunch of weight. It's hard to tell exactly how much because before the lupus I was pregnant, then had the baby and was nursing...so I lost a lot of weight after the baby was born and it just sortof kept going. It really feels weird to be so skinny - around 110 lbs. I haven't been this small since high school. It's nice to be skinny, but think I'd rather be fatter with no lupus than skinny with lupus...
I'm still having skin issues - lesions on various parts of the body, rash on face, losing hair (hate that one...) - but at least none of these are painful.
I'm pretty much living life as if I don't have lupus. I am trying to simplify if possible, but I've decided that I might as well live my life how I want to while I can...seize the day and all that... :D
I've lost a bunch of weight. It's hard to tell exactly how much because before the lupus I was pregnant, then had the baby and was nursing...so I lost a lot of weight after the baby was born and it just sortof kept going. It really feels weird to be so skinny - around 110 lbs. I haven't been this small since high school. It's nice to be skinny, but think I'd rather be fatter with no lupus than skinny with lupus...
Friday, February 22, 2008
starting to sink in
So, I think the fact that I have lupus is finally starting to sink in. I've started developing symptoms that are starting to bother me more...sure, pain all over all day is no big deal, but now I'm LOSING MY HAIR!! :( And I have a couple small rash spots on my jaw and ears (not to mention the lesions on my leg...), and they bug me too.
I've decided to start a symptoms journal so I can keep track of my symptoms all in one place (so I don't need to make separate posts for the various complaints...complaining is starting to get old....).
I sortof find it weird that these new symptoms bother me more than the old stuff. They are less debilitating than the other painful symptoms. But the hair loss really stinks. I've always disliked my fairly thin hair, and now I have even less of it and it really sucks. It's receding at the hairline and there are almost-bald spots, too. Guess it's time to do some hat shopping :/
I've also started thinking that I might want to find a new doctor (yes, again). This is part of the whole "sinking in" part. I'm realizing that I will be working with my doctor for the rest of my life, and although I do like Dr. A, she's kindof my rebound doctor from Dr. Jerk. I was happy with Dr. A because she was very hopeful and nice, and that was what I really needed after the discouraging start with Dr. Jerk, but Dr. A has some drawbacks. Primarily, she isn't really open to working with alternative or complimentary therapies, and that's very important to me. She doesn't tell me I can't, but I'd like to work with someone who is knowledgeable about them.
I found the name of a rheumy in NJ that is a DO (rather than an MD), and I thought that might be a good start. It turns out that she is not currently practicing, but she did recommend a doctor over in PA. Dr. Susan Ward, a rheumatologist, runs The Consciousness Institute, a rheumatology medical practice. The Institute offers an array of alternative solutions, including meditation, massage, nutrition counseling etc. I'm really excited about this place, it sounds like just what I was looking for, though it is far away (about 2 hours). I am planning to contact them and see what they think. I would be willing to travel that far a few times a year if they would work with me that way. Maybe I could check in more often by email, and have my blood tests done locally...I guess I'll see what they say.
I've decided to start a symptoms journal so I can keep track of my symptoms all in one place (so I don't need to make separate posts for the various complaints...complaining is starting to get old....).
I sortof find it weird that these new symptoms bother me more than the old stuff. They are less debilitating than the other painful symptoms. But the hair loss really stinks. I've always disliked my fairly thin hair, and now I have even less of it and it really sucks. It's receding at the hairline and there are almost-bald spots, too. Guess it's time to do some hat shopping :/
I've also started thinking that I might want to find a new doctor (yes, again). This is part of the whole "sinking in" part. I'm realizing that I will be working with my doctor for the rest of my life, and although I do like Dr. A, she's kindof my rebound doctor from Dr. Jerk. I was happy with Dr. A because she was very hopeful and nice, and that was what I really needed after the discouraging start with Dr. Jerk, but Dr. A has some drawbacks. Primarily, she isn't really open to working with alternative or complimentary therapies, and that's very important to me. She doesn't tell me I can't, but I'd like to work with someone who is knowledgeable about them.
I found the name of a rheumy in NJ that is a DO (rather than an MD), and I thought that might be a good start. It turns out that she is not currently practicing, but she did recommend a doctor over in PA. Dr. Susan Ward, a rheumatologist, runs The Consciousness Institute, a rheumatology medical practice. The Institute offers an array of alternative solutions, including meditation, massage, nutrition counseling etc. I'm really excited about this place, it sounds like just what I was looking for, though it is far away (about 2 hours). I am planning to contact them and see what they think. I would be willing to travel that far a few times a year if they would work with me that way. Maybe I could check in more often by email, and have my blood tests done locally...I guess I'll see what they say.
symptom and meds journal - 2007/2008
I've decided to make one post where I can keep a record of my symptoms so I can track if they're are improving or worsening. I plan to try and update monthly
Summary thus far:
October 2007
faint rash on nose, aches and pains
rash spread to whole face, neck, chest, some on legs and arms
aches and pains (muscles and joints) worsened
low grade fever
pain under scalp (so weird!)
started Plaquenil (200mg), didn't notice any major changes
November 2007
did about a month of Prednisone (the miracle drug!)
felt alllll better...
but couldn't sleep, started getting shaky hands, ate like a horse, gained weight etc.
still taking plaquenil
December 2007
tapered off the prednisone
symptoms slowly came back
and achy joint here one day, there the next
sore muscles, mainly in the back, neck, shoulders
classic malar rash on nose and cheeks
January/February 2008
general malaise
sore muscles (shoulders, back)
occasional sore joints (fingers, wrists)
thinning hair, receding hairline & almost-bald spots
lesions on leg (about 1/2 dozen) - biopsy by dermatologist diagnosed ... lupus! (surprise!)
rash in ears and just under ears (on jawline), also on right eyebrow and top of forehead at hairline
still taking 200 mg plaquenil (also calcium w/ D, fish oil, multivitamin, and fenugreek (for nursing))
march 2008
feeling better, think the plaquenil is kicking in (whoo hoo!)
most joint aches and pains are gone
old pain in lower back/hip area is back (??)
still have skin lesions on face, chest, leg, hand...
mild malar rash, rash above eyebrow and at hairline and jawline
down to a size 2/4
still taking 200 mg plaquenil (also calcium w/ D, fish oil, multivitamin, and fenugreek (for nursing))
end of March 2008
had a pretty bad flare with pain throughout body (started in shoulder blades, very odd) - only lasted around 24 hours - also great fatigue for one day
not sure what brought on the flare, had some tummy issues which may have been a stomach bug or from eating too much sugar/white flour
in general - pain is mostly gone, but skin is worse
face still has malar rash, spread to jawline, hairline
spots on hands, legs, chest, belly
hair loss is worse
started chi gong (like tai chi) this morning (march 21)
working on eating less sugar, more whole grains, fruits and veggies
June 2008
haven't posted in a while because things have been pretty stable
haven't had any pain in a few months
my skin is still bad -- it lightened up for a bit, but now have the rash on forehead, jaw, malar rash on cheeks, rash on back of neck, red splotchy on back of hands and creeping up arms -- starting to agree that sun is a problem and have ordered sun protective clothing so I don't have to become a vampire
hair loss is still there - three baldish spots running up my scalp - am wearing a bandanna most days, luckily they look kinda cute :)
have slacked off on tai chi due to major scheduling changes (P got a job and so I don't have free time anymore in the mornings) -- would like to start again soon
have just stopped taking Plaquenil (June 16, 2008)
started seeing new doctor (Dr. Flowers) and will be getting new treatment plan in the next week or two
am still taking Fenugreek, but that's pretty much it
have been eating poorly in anticipation of new treatment plan including nutritional restrictions (ie. fear I'll never be able to eat cheese again!)
June 30, 2008
Started taking nutritional supplements today - the list is too long to write here.
Current health update:
Severe rash on chest, neck (front and back) and arms and hands. Rash feels like mild sunburn and is red and raised with some peeling parts. It's very uncomfortable and sensitive.
Rash on face is not as bad, but face is still mostly covered in red/pink rash.
Took a walk around noon today and was very tired this afternoon. Not sure if it was sun exposure or lack of sleep due to big storm last night.
No aches and pains, still have hair loss.
Working on reducing sugar and salt from my diet. Will start making herbal tea in the next day or two.
July 5, 2008
Still feeling pretty good. I think my joints in my fingers are slightly swollen but are not painful. I do have pain in my lower rear hip (right side), but it feels like the pain I used to have, long before the lupus was even an issue. I'm hoping to be able to add acupuncture in a couple times a month, and hopefully that will help with this pain. I think it is exacerbated by driving long distances, so will try to minimize long drives.
My rash on my arms, neck, hands and face is still bad. My arms and neck are the worst, red, peely and painful. It hurts and is raw like sunburn and it looks quite awful.
Am taking supplements twice a day. Tried the chinese herbal tea yesterday and it tastes disgusting. It will be hard to drink it once a day, much less twice.
Need to be more strict on diet -- cutting out salt and sugar is *extremely* difficult, so cheating is easier, so eating poorly is easier.
Summary thus far:
October 2007
faint rash on nose, aches and pains
rash spread to whole face, neck, chest, some on legs and arms
aches and pains (muscles and joints) worsened
low grade fever
pain under scalp (so weird!)
started Plaquenil (200mg), didn't notice any major changes
November 2007
did about a month of Prednisone (the miracle drug!)
felt alllll better...
but couldn't sleep, started getting shaky hands, ate like a horse, gained weight etc.
still taking plaquenil
December 2007
tapered off the prednisone
symptoms slowly came back
and achy joint here one day, there the next
sore muscles, mainly in the back, neck, shoulders
classic malar rash on nose and cheeks
January/February 2008
general malaise
sore muscles (shoulders, back)
occasional sore joints (fingers, wrists)
thinning hair, receding hairline & almost-bald spots
lesions on leg (about 1/2 dozen) - biopsy by dermatologist diagnosed ... lupus! (surprise!)
rash in ears and just under ears (on jawline), also on right eyebrow and top of forehead at hairline
still taking 200 mg plaquenil (also calcium w/ D, fish oil, multivitamin, and fenugreek (for nursing))
march 2008
feeling better, think the plaquenil is kicking in (whoo hoo!)
most joint aches and pains are gone
old pain in lower back/hip area is back (??)
still have skin lesions on face, chest, leg, hand...
mild malar rash, rash above eyebrow and at hairline and jawline
down to a size 2/4
still taking 200 mg plaquenil (also calcium w/ D, fish oil, multivitamin, and fenugreek (for nursing))
end of March 2008
had a pretty bad flare with pain throughout body (started in shoulder blades, very odd) - only lasted around 24 hours - also great fatigue for one day
not sure what brought on the flare, had some tummy issues which may have been a stomach bug or from eating too much sugar/white flour
in general - pain is mostly gone, but skin is worse
face still has malar rash, spread to jawline, hairline
spots on hands, legs, chest, belly
hair loss is worse
started chi gong (like tai chi) this morning (march 21)
working on eating less sugar, more whole grains, fruits and veggies
June 2008
haven't posted in a while because things have been pretty stable
haven't had any pain in a few months
my skin is still bad -- it lightened up for a bit, but now have the rash on forehead, jaw, malar rash on cheeks, rash on back of neck, red splotchy on back of hands and creeping up arms -- starting to agree that sun is a problem and have ordered sun protective clothing so I don't have to become a vampire
hair loss is still there - three baldish spots running up my scalp - am wearing a bandanna most days, luckily they look kinda cute :)
have slacked off on tai chi due to major scheduling changes (P got a job and so I don't have free time anymore in the mornings) -- would like to start again soon
have just stopped taking Plaquenil (June 16, 2008)
started seeing new doctor (Dr. Flowers) and will be getting new treatment plan in the next week or two
am still taking Fenugreek, but that's pretty much it
have been eating poorly in anticipation of new treatment plan including nutritional restrictions (ie. fear I'll never be able to eat cheese again!)
June 30, 2008
Started taking nutritional supplements today - the list is too long to write here.
Current health update:
Severe rash on chest, neck (front and back) and arms and hands. Rash feels like mild sunburn and is red and raised with some peeling parts. It's very uncomfortable and sensitive.
Rash on face is not as bad, but face is still mostly covered in red/pink rash.
Took a walk around noon today and was very tired this afternoon. Not sure if it was sun exposure or lack of sleep due to big storm last night.
No aches and pains, still have hair loss.
Working on reducing sugar and salt from my diet. Will start making herbal tea in the next day or two.
July 5, 2008
Still feeling pretty good. I think my joints in my fingers are slightly swollen but are not painful. I do have pain in my lower rear hip (right side), but it feels like the pain I used to have, long before the lupus was even an issue. I'm hoping to be able to add acupuncture in a couple times a month, and hopefully that will help with this pain. I think it is exacerbated by driving long distances, so will try to minimize long drives.
My rash on my arms, neck, hands and face is still bad. My arms and neck are the worst, red, peely and painful. It hurts and is raw like sunburn and it looks quite awful.
Am taking supplements twice a day. Tried the chinese herbal tea yesterday and it tastes disgusting. It will be hard to drink it once a day, much less twice.
Need to be more strict on diet -- cutting out salt and sugar is *extremely* difficult, so cheating is easier, so eating poorly is easier.
Friday, February 1, 2008
so many blogs, so little time...
Realized I haven't posted in a month, and that is bad blogging etiquette (yay, I finally remembered how to spell "etiquette"!). Not much good news on the lupus side of things. I've been feeling fairly cruddy since going off the prednisone...gradually getting a little worse each day it seems. Mostly muscle pain in my back and neck and arms...it's quite hard carrying my sweet baby who is now over 25 lbs!
It's frustrating really...I am still in a bit of denial I'm sure. I know I should be cutting back, reducing stress, increasing sleep...but these are momentous tasks when you have a 17 month old baby and run your own business. Can't really cut back on being a mommy, and working at the store is enjoyable and stressful at the same time.
The rash on my face is back, though not as bad as before...just the classic malar rash on the nose and cheeks. I have these weird rash/spot things on my leg...I went to the dermatologist and he did a biopsy of them...surprise, they're lupus!
The dermatologist also commented on my thinning hair...I guess it's been so gradual that I didn't really notice, but I guess it is thinner than before...oh joy.
Anyway, not the cheerfullest post, but it's not the cheerfullest time. Have a lupus support meeting tomorrow, hopefully that will be interesting.
It's frustrating really...I am still in a bit of denial I'm sure. I know I should be cutting back, reducing stress, increasing sleep...but these are momentous tasks when you have a 17 month old baby and run your own business. Can't really cut back on being a mommy, and working at the store is enjoyable and stressful at the same time.
The rash on my face is back, though not as bad as before...just the classic malar rash on the nose and cheeks. I have these weird rash/spot things on my leg...I went to the dermatologist and he did a biopsy of them...surprise, they're lupus!
The dermatologist also commented on my thinning hair...I guess it's been so gradual that I didn't really notice, but I guess it is thinner than before...oh joy.
Anyway, not the cheerfullest post, but it's not the cheerfullest time. Have a lupus support meeting tomorrow, hopefully that will be interesting.
Tuesday, January 1, 2008
off the prednisone...
So, it's been about a week since I've been completely off the prednisone. The first few days I was a little nervous because the pain started creeping back in...sore knuckles on one hand one day, two knuckles on the other hand the next day...a sore wrist, then two painful thighs...
But now things seem to have balanced out and I'm doing OK. I have some pain in my back, but taking a couple Advil is enough. I'm very relieved, I was pretty worried that the pain would all come back when I stopped the prednisone completely.
So, I'm still feeling pretty draggy, it's still hard to get stuff done. I have a little pink in the nose and cheeks, but most of the rash is gone. I'm not sure if the flare is totally gone, or if the plaquenil is kicking in, but I feel pretty good thank goodness.
I've started having little "chats" with my immune system, telling it that it really doesn't have to work so hard and that maybe it wants to take a vacation? Maybe it's working! :)
I had more tests done last Friday, hopefully the results will come back soon and they will be better than the last round...
But now things seem to have balanced out and I'm doing OK. I have some pain in my back, but taking a couple Advil is enough. I'm very relieved, I was pretty worried that the pain would all come back when I stopped the prednisone completely.
So, I'm still feeling pretty draggy, it's still hard to get stuff done. I have a little pink in the nose and cheeks, but most of the rash is gone. I'm not sure if the flare is totally gone, or if the plaquenil is kicking in, but I feel pretty good thank goodness.
I've started having little "chats" with my immune system, telling it that it really doesn't have to work so hard and that maybe it wants to take a vacation? Maybe it's working! :)
I had more tests done last Friday, hopefully the results will come back soon and they will be better than the last round...
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