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.
Friday, February 22, 2008
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.
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