I mentioned it earlier, but haven't summarized my latest Dr. visit (June 25th).
I had Jim come with me because I was afraid Obediah would yell at me again for not staying out of the sun, or not getting better, or because the rhumatologist didn't agree with him. Not sure if it was because Jim was there or not, but Obediah was actually nice this time.
He had the rhumatologist results: all clear. Nothing abnormal. Perfectly fine.
He saw that the rash was getting better, but not at the speed he was comfortable with. He wanted to move me to a new drug (Methotrexate). But the side effects sounded like they would harm my organs faster than this disease could. I am waiting to talk to the rhumatologist before I make that decision.
As stated in my earlier post, Obediah did change my topical ointment, which is clearing up my hands nicely, and he gave me an serum for my scalp to curb the itching there. That itching stops all together, which has been WONDERFUL.
In other news, my PCP heard back from the pathologists in Arizona. They agreed immediately with Obediah's diagnosis. No need for further testing. It is confirmed that I have a "classic case" of dermatomyositis - though I don't have the "myositis" part...yet...
Need to keep my physical activity up and keep sticking to my diet to help ensure that doesn't happen.
Keep Calm
Keri On
Showing posts with label dermatologist. Show all posts
Showing posts with label dermatologist. Show all posts
Thursday, July 11, 2013
Tuesday, July 9, 2013
My hair is falling out today
I feel like I am losing it by the handfuls today. Though, there have been times in my past where this happens sporadically - hypothyroid and curly hair in general falls out more than most. There are still no big gaping holes where hair used to be. But there was a ton of hair in the sink this morning.
That is scary as hell. It always makes me feel like I'm losing this battle.
The rash is about the same as it has been. The dermatologist put me on a new ointment that is doing very well on the bumps on my hands. The rest of the rash is still migrating around my body. This week, it is prevalent on my forearms, when a week or so ago, it was worst on my shoulders and back.
The dermatologist also gave me a serum for my scalp to ease the itching there. This has been a godsend, but I think it is impacting my hair loss. There is a ton of alcohol in it, so I think it is drying out my scalp? Maybe?
I am going though sunblock like crazy.
The Dr. also pointed me to the Mayo Clinic to read up more on my disease: http://www.mayoclinic.com/health/dermatomyositis/DS00335. Good information. Nothing really new. I think the fact that it isn't anything new or earth-shattering there has made me feel a bit better.
Everyone is being very supportive. I know they don't know what to say in order to help. I feel bad that I look for so much strength from others when they are already giving me everything they have.
Just keep swimming.
Breathe
stretch
walk
ride
BREATHE
That is scary as hell. It always makes me feel like I'm losing this battle.
The rash is about the same as it has been. The dermatologist put me on a new ointment that is doing very well on the bumps on my hands. The rest of the rash is still migrating around my body. This week, it is prevalent on my forearms, when a week or so ago, it was worst on my shoulders and back.
The dermatologist also gave me a serum for my scalp to ease the itching there. This has been a godsend, but I think it is impacting my hair loss. There is a ton of alcohol in it, so I think it is drying out my scalp? Maybe?
I am going though sunblock like crazy.
The Dr. also pointed me to the Mayo Clinic to read up more on my disease: http://www.mayoclinic.com/health/dermatomyositis/DS00335. Good information. Nothing really new. I think the fact that it isn't anything new or earth-shattering there has made me feel a bit better.
Everyone is being very supportive. I know they don't know what to say in order to help. I feel bad that I look for so much strength from others when they are already giving me everything they have.
Just keep swimming.
Breathe
stretch
walk
ride
BREATHE
Friday, April 26, 2013
mixed bag
I had three doctor appointments this week, and unfortunately, it resulted in a mixed bag of emotions and findings.
Monday was my appointment with the rhumatologist. She was very friendly and interested in my case. She asked tons of questions about what I may be experiencing as far as symptoms. Most of which I answered "no, I wasn't experiencing that". Then she did a few muscle strength tests, such as holding my hands apart and telling me to put them together and then the reverse, holding my shins against the bench I was sitting on and telling me to push her away, and pushing down on my thighs while I was sitting and telling me to lift her. I must have passed those tests. Not only did I push her halfway across the room, she didn't order any rhumatology labs except for more blood work and a chest xray.
She ordered 7 vials-worth of blood tests.
She also is not completely convinced that I have dermatomyositis.
What.
She can see where the dermatologist was going with that diagnosis, but she also saw way too many things that didn't support it. Like the line of bumps along my fingers. Like the fact that ALL of my blood tests have come back normal. And the blood test that showed my ANA elevated was a "minimal bump" in the scale. Barely worth noting.
I left her office with "don't worry, we'll figure this out, I'm optimistic. Come back in a few weeks after the Plaquenil has time to do its thing (it takes up to 3 months to come to full strength in my body). And we'll see what your blood test say."
I felt like there was a glimmer of hope that this might be something different. Something not as major. I tried not to think it might be something worse.
Tuesday I pissed off the dermatologist when I told him that the rhumatologist wasn't convinced of his diagnosis. He actually got pissed. She didn't run any of the tests he wanted her to. She questioned his diagnosis.
Note that he has never made mention of the bumps on the sides of my index fingers and he diagnosed me almost immediately upon seeing me with dermatomyositis.
He said that I wasn't getting better that next steps may include a CT scan to look for malignancies an a stronger drug. (even though the current drug isn't up to speed yet). He scolded me for not staying out of the sun. I had to stay as far from it as possible - even windows. Apply and reapply sunblock. He was almost yelling.
I told him I wasn't going to live in a black box. I would wear the sunscrean and cover up as much as possible, but I would not live in a hole.
He filled out a form for my next visit in 8 weeks and left the room saying that he had to have a talk with the rhumatologist. H left the paper on the counter and barely said goodbye.
Wow.
I cried the rest of the day.
Wednesday, thankfully, I had no appointments. I enjoyed the day of rest.
Thursday I saw my PCP or general practitioner, Matt. He is so mellow. I actually enjoy going to see him. We talked about the results of the tests he ran. I am a very healthy person according to him. My cholesterol ratios of good:bad were off the charts he said. He was amazed. Everything else was spot on.
I told him about my previous appointments and how the dermatologist reacted. He said I was right to be concerned about that reaction. No doctor should be offended that another disagrees with him. And he agreed with the rhumatologist that the bumps on my index fingers didn't coincide with the current diagnosis.
Then he said that he had just met with a group of dermatological pathologists. The lead is nationally known and tours the country giving talks, etc. They told him that if he ever came across an odd or cool or exciting skin case, to send them photos and a back story and they would investigate it.
Lo and behold - here I am!
He took all kinds of photos and asked me questions to write up the back story...including what types of "outdoor chemicals" have I been exposed to. That was interesting. "Outdoor chemicals"? Like pesticides and auto stripper and paints. I told him I grew up on a farm and probably got crop dusted more than I should have. He took tons of notes and said he'd send it all off.
So I left feeling hopeful again.
Thankfully I don't see another doctor for 8 weeks...unless my nerves fuck up my flora:fauna ratio...
I can't wait to hear what the pathologist team comes back with. There will probably be another biopsy, but I'm ready and willing to hear another opinion. Another opinion means more options. I'm always good with that.
Monday was my appointment with the rhumatologist. She was very friendly and interested in my case. She asked tons of questions about what I may be experiencing as far as symptoms. Most of which I answered "no, I wasn't experiencing that". Then she did a few muscle strength tests, such as holding my hands apart and telling me to put them together and then the reverse, holding my shins against the bench I was sitting on and telling me to push her away, and pushing down on my thighs while I was sitting and telling me to lift her. I must have passed those tests. Not only did I push her halfway across the room, she didn't order any rhumatology labs except for more blood work and a chest xray.
She ordered 7 vials-worth of blood tests.
She also is not completely convinced that I have dermatomyositis.
What.
She can see where the dermatologist was going with that diagnosis, but she also saw way too many things that didn't support it. Like the line of bumps along my fingers. Like the fact that ALL of my blood tests have come back normal. And the blood test that showed my ANA elevated was a "minimal bump" in the scale. Barely worth noting.
I left her office with "don't worry, we'll figure this out, I'm optimistic. Come back in a few weeks after the Plaquenil has time to do its thing (it takes up to 3 months to come to full strength in my body). And we'll see what your blood test say."
I felt like there was a glimmer of hope that this might be something different. Something not as major. I tried not to think it might be something worse.
Tuesday I pissed off the dermatologist when I told him that the rhumatologist wasn't convinced of his diagnosis. He actually got pissed. She didn't run any of the tests he wanted her to. She questioned his diagnosis.
Note that he has never made mention of the bumps on the sides of my index fingers and he diagnosed me almost immediately upon seeing me with dermatomyositis.
He said that I wasn't getting better that next steps may include a CT scan to look for malignancies an a stronger drug. (even though the current drug isn't up to speed yet). He scolded me for not staying out of the sun. I had to stay as far from it as possible - even windows. Apply and reapply sunblock. He was almost yelling.
I told him I wasn't going to live in a black box. I would wear the sunscrean and cover up as much as possible, but I would not live in a hole.
He filled out a form for my next visit in 8 weeks and left the room saying that he had to have a talk with the rhumatologist. H left the paper on the counter and barely said goodbye.
Wow.
I cried the rest of the day.
Wednesday, thankfully, I had no appointments. I enjoyed the day of rest.
Thursday I saw my PCP or general practitioner, Matt. He is so mellow. I actually enjoy going to see him. We talked about the results of the tests he ran. I am a very healthy person according to him. My cholesterol ratios of good:bad were off the charts he said. He was amazed. Everything else was spot on.
I told him about my previous appointments and how the dermatologist reacted. He said I was right to be concerned about that reaction. No doctor should be offended that another disagrees with him. And he agreed with the rhumatologist that the bumps on my index fingers didn't coincide with the current diagnosis.
Then he said that he had just met with a group of dermatological pathologists. The lead is nationally known and tours the country giving talks, etc. They told him that if he ever came across an odd or cool or exciting skin case, to send them photos and a back story and they would investigate it.
Lo and behold - here I am!
He took all kinds of photos and asked me questions to write up the back story...including what types of "outdoor chemicals" have I been exposed to. That was interesting. "Outdoor chemicals"? Like pesticides and auto stripper and paints. I told him I grew up on a farm and probably got crop dusted more than I should have. He took tons of notes and said he'd send it all off.
So I left feeling hopeful again.
Thankfully I don't see another doctor for 8 weeks...unless my nerves fuck up my flora:fauna ratio...
I can't wait to hear what the pathologist team comes back with. There will probably be another biopsy, but I'm ready and willing to hear another opinion. Another opinion means more options. I'm always good with that.
Monday, April 8, 2013
getting poked
Have I mentioned that I love Sharon at Rose City Acupuncture? Well, I do.
I told her about what Dr. Rose wanted her to check out on me - the tender spot on the right side of my sternum. She looked at it, barely touched it, and said "You have a rib out. Easy. What else is going on?"
Whew. No cardiac BS to pile on top of everything else!
So this was my first time face up on the table as she inserted needs in my chest and in my knees and my right hip to help the achiness that I've been experiencing.
I also have to begin stretching out my big right toe to aid my knee and therefore my hip.
See?
I love her.
I go back next Monday :)
OB: food log
I am really liking my calorie counter app so I am logging everything there.
So far, I've been able to stay under the daily alotted calories and not feel like I'm deprived or starving.
No real flare ups this weekend until today. For lunch I had baked chicken breast and sauteed zucchini with a dab of Ranch dressing wrapped in romaine leaves.
Healthy right?
I felt like I should be on some weight loss show showing how easy this is.
But by the time I made it to my desk, my hands were hot and red. Not REALLY red, but more red than they have been all weekend.
...must need more spankings....
it seems that after a night/morning of sex and spankings, my hands are not red at ALL and the bumps are very small..
...not sure if I should share that with my dermatologist? I think Dr. Rose would laugh. :)
I told her about what Dr. Rose wanted her to check out on me - the tender spot on the right side of my sternum. She looked at it, barely touched it, and said "You have a rib out. Easy. What else is going on?"
Whew. No cardiac BS to pile on top of everything else!
So this was my first time face up on the table as she inserted needs in my chest and in my knees and my right hip to help the achiness that I've been experiencing.
I also have to begin stretching out my big right toe to aid my knee and therefore my hip.
See?
I love her.
I go back next Monday :)
OB: food log
I am really liking my calorie counter app so I am logging everything there.
So far, I've been able to stay under the daily alotted calories and not feel like I'm deprived or starving.
No real flare ups this weekend until today. For lunch I had baked chicken breast and sauteed zucchini with a dab of Ranch dressing wrapped in romaine leaves.
Healthy right?
I felt like I should be on some weight loss show showing how easy this is.
But by the time I made it to my desk, my hands were hot and red. Not REALLY red, but more red than they have been all weekend.
...must need more spankings....
it seems that after a night/morning of sex and spankings, my hands are not red at ALL and the bumps are very small..
...not sure if I should share that with my dermatologist? I think Dr. Rose would laugh. :)
Tuesday, April 2, 2013
dermatomyositis
From Wikipedia: http://en.wikipedia.org/wiki/Dermatomyositis
Dermatomyositis (DM) is a connective-tissue disease related to polymyositis (PM) that is characterized by inflammation of the muscles and the skin. While DM most frequently affects the skin and muscles, it is a systemic disorder that may also affect the joints, the esophagus, the lungs, and, less commonly, the heart.
I can't even pronounce it yet.
From Websters: http://www.merriam-webster.com/dictionary/dermatomyositis
der·ma·to·my·o·si·tis
So far, I only have the skin part of this disease. My blood tests have all come back clear except for the ANA test, which came back positive, which is why the dermatologist diagnosed me with dermatomyositis. There! I spelled it out myself instead of cut/paste from Google. (little win)
So why do I feel I have to keep my dermatologist under control? Because he was so fricking excited to see the rash I came in with. It is apparently his area of interest, so he geeked out on me. LARGE LONG words, lots of hand flailing, talking 1000rpm. He scared me. I wasn't sure if I was going to die, or if he thought this was a cool thing to have. It wasn't until I started crying (lots of that these days) while he took the skin biopsies that he realized that I was scared.
After that, he was great. Spoke to me in common terms, gave me a printed list of to do items, told me that we caught this early and he didn't expect this to become too big of a problem. He sent me home with a prescription for an ointment (clobetasol propionate) two handfuls of sunblock and did the parental finger pointing when he said to use all of it. "Reapply!" and to wear a broad brimmed hat.
At my second visit to get the results of the bloodtests and the biopsy, he said he wasn't happy with how long it was taking for the ointment to work. He prescribed a drug then and set me up with another list of appointments to make with a rhumatologist (for testing muscles) and an optimologist (for a baseline test for my eyes). That last part scared me again. They drug he prescribed is hydroxychloroquine (Plaquenil). It actually messes with my DNA to hinder it from reacting to UV rays.
My DNA?!?!?
Plus it could cause liver inflammation and impact my eyesight - hence the baseline eye exam. Yay me!
He promises that the effects are reversible after stopping the medication....How long am I going to be on this again?!?!
So now I'm looking into naturopaths to help me make it so this mutant-causing (paging Dr. Xavier) drug become unnecessary...I hope...
to do:
Dermatomyositis (DM) is a connective-tissue disease related to polymyositis (PM) that is characterized by inflammation of the muscles and the skin. While DM most frequently affects the skin and muscles, it is a systemic disorder that may also affect the joints, the esophagus, the lungs, and, less commonly, the heart.
I can't even pronounce it yet.
From Websters: http://www.merriam-webster.com/dictionary/dermatomyositis
der·ma·to·my·o·si·tis
dər-mə-tō-ˌmī-ə-ˈsī-təs
So why do I feel I have to keep my dermatologist under control? Because he was so fricking excited to see the rash I came in with. It is apparently his area of interest, so he geeked out on me. LARGE LONG words, lots of hand flailing, talking 1000rpm. He scared me. I wasn't sure if I was going to die, or if he thought this was a cool thing to have. It wasn't until I started crying (lots of that these days) while he took the skin biopsies that he realized that I was scared.
After that, he was great. Spoke to me in common terms, gave me a printed list of to do items, told me that we caught this early and he didn't expect this to become too big of a problem. He sent me home with a prescription for an ointment (clobetasol propionate) two handfuls of sunblock and did the parental finger pointing when he said to use all of it. "Reapply!" and to wear a broad brimmed hat.
At my second visit to get the results of the bloodtests and the biopsy, he said he wasn't happy with how long it was taking for the ointment to work. He prescribed a drug then and set me up with another list of appointments to make with a rhumatologist (for testing muscles) and an optimologist (for a baseline test for my eyes). That last part scared me again. They drug he prescribed is hydroxychloroquine (Plaquenil). It actually messes with my DNA to hinder it from reacting to UV rays.
My DNA?!?!?
Plus it could cause liver inflammation and impact my eyesight - hence the baseline eye exam. Yay me!
He promises that the effects are reversible after stopping the medication....How long am I going to be on this again?!?!
So now I'm looking into naturopaths to help me make it so this mutant-causing (paging Dr. Xavier) drug become unnecessary...I hope...
to do:
- start taking Plaquenil (done)
- make appointment with rhumatology (done. April 22nd)
- make appointment with eye doctor (done! going in on April 5th!)
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