The drainage on my bottom and groin areas have been horrendous lately. I just finished a period, so I thought that might be it, but several days later I was still draining. Needing to stop it, what I did was put some Neosporin + Pain Relief on a pad and the drainage has slowed considerably.
This is just a little tip of something that worked for me. Maybe it will work for you. Or maybe it will stop working for me tomorrow. With HS you never know.
Tuesday, July 17, 2007
Tuesday, July 3, 2007
In the deep end
Truth be told, I run multiple blogs. I had one for parenting that I just disabled, but then I have another one that I use to keep up with friends. This blog is on Live Journal. Throughout my short time as a LJ member I have met a few people that I know solely online and overall it has been a good experience.
Today one of the people that I recently "friended" (a non HS-sufferer to my knowledge) innocently mentioned signs that displayed rules she had seen at the pool in one of her blog entries. She mentioned that there were a couple of rules that were no-brainers like "Don't run," and "Do not enter pool if you have oozing wound." That second one made me sit up straight, for I have never seen a sign that read that. Have you?
All of a sudden I felt very unwelcome in the public pool world. Then this makes me wonder if people with HS would be asked to leave a pool if someone discovered their disease. On the one hand, open wounds on strangers can be scary in such a communal place. I get that. But at the same time, we know that our condition is not communicable. How would we present that to the proper authorities if need be? In fact, should we even be expected to do so?
Personally, I find the prospect of being approached about the wounds under my arms and on my thighs a little on the terrifying side. I am constantly trying to improve my self-confidence about my scars and the leakage in my own head, so to have to do it in a public place with a stranger would bring me to a new low with this disease and I think I would just retreat.
I know that for many people the swimming pool and sun are excellent sources of comfort for those HS aliens. Surely there are some of you out there going to public pools. In the public pool situation, what do you do? Do you go for full coverage? Are you careful not to raise your arms? Do you just dip your toes in, claiming that you have cramps or just ate?
Have any of you been approached about your wounds and scars?
What strikes me as a tad humorous about all of this is that the woman on Live Journal was just making an off-handed comment, probably trying to throw a little humor into her post. For me, it was something completely different. The thought of there being a rule specifically meant for my condition remained on my mind all day and obviously got me thinking enough to post about it here. It goes to show us that even with the most innocent of topics, we HS sufferers do not have the luxury of treading lightly.
Today one of the people that I recently "friended" (a non HS-sufferer to my knowledge) innocently mentioned signs that displayed rules she had seen at the pool in one of her blog entries. She mentioned that there were a couple of rules that were no-brainers like "Don't run," and "Do not enter pool if you have oozing wound." That second one made me sit up straight, for I have never seen a sign that read that. Have you?
All of a sudden I felt very unwelcome in the public pool world. Then this makes me wonder if people with HS would be asked to leave a pool if someone discovered their disease. On the one hand, open wounds on strangers can be scary in such a communal place. I get that. But at the same time, we know that our condition is not communicable. How would we present that to the proper authorities if need be? In fact, should we even be expected to do so?
Personally, I find the prospect of being approached about the wounds under my arms and on my thighs a little on the terrifying side. I am constantly trying to improve my self-confidence about my scars and the leakage in my own head, so to have to do it in a public place with a stranger would bring me to a new low with this disease and I think I would just retreat.
I know that for many people the swimming pool and sun are excellent sources of comfort for those HS aliens. Surely there are some of you out there going to public pools. In the public pool situation, what do you do? Do you go for full coverage? Are you careful not to raise your arms? Do you just dip your toes in, claiming that you have cramps or just ate?
Have any of you been approached about your wounds and scars?
What strikes me as a tad humorous about all of this is that the woman on Live Journal was just making an off-handed comment, probably trying to throw a little humor into her post. For me, it was something completely different. The thought of there being a rule specifically meant for my condition remained on my mind all day and obviously got me thinking enough to post about it here. It goes to show us that even with the most innocent of topics, we HS sufferers do not have the luxury of treading lightly.
Wednesday, June 27, 2007
Just an udpate . . .
Getting back to my old regime is working. Old wounds are starting to heal and I'm getting that itching sensation that signifies healing everywhere- under my arms, groin, breasts, etc. Plus, I've managed to lose two more pounds this week so far. I've lost a total of 12 pounds since Easter- huzaah!
In addition to the old routine, I have upped my water intake to just over 80 oz per day. We'll see if this has any long-term effects on my body. I'll keep you posted.
Also, I did finally order one of those swim miniskirts from Landsend. I'm not sure what I think about it. It runs a little bigger than I thought, and I think I have the wrong size. Anyway, I wore it to the pool for my son's swimming lessons anyway. I felt more confident about walking around the Y in it even though I did get a couple of looks. People assume that you're trying to cover up weight when you wear those and that is frustrating because I don't so much care about the weight (even though I am overweight, but I'm working on losing it!). But then if you tell people you are covering up because of your scars then I guess it defeats the purpose of hiding in the first place, right? Anyway, the scar issue continues to be an internal struggle for me.
One other thing- this weekend I intend on getting some agave nectar as I heard that it is a good, all natural sugar substitute with a low glycemic index. It can even be used in baking. Currently I use spenda, and it's pretty swell, but I'm always looking out for new alternatives. Does anyone have any experience with it?
In addition to the old routine, I have upped my water intake to just over 80 oz per day. We'll see if this has any long-term effects on my body. I'll keep you posted.
Also, I did finally order one of those swim miniskirts from Landsend. I'm not sure what I think about it. It runs a little bigger than I thought, and I think I have the wrong size. Anyway, I wore it to the pool for my son's swimming lessons anyway. I felt more confident about walking around the Y in it even though I did get a couple of looks. People assume that you're trying to cover up weight when you wear those and that is frustrating because I don't so much care about the weight (even though I am overweight, but I'm working on losing it!). But then if you tell people you are covering up because of your scars then I guess it defeats the purpose of hiding in the first place, right? Anyway, the scar issue continues to be an internal struggle for me.
One other thing- this weekend I intend on getting some agave nectar as I heard that it is a good, all natural sugar substitute with a low glycemic index. It can even be used in baking. Currently I use spenda, and it's pretty swell, but I'm always looking out for new alternatives. Does anyone have any experience with it?
Sunday, June 17, 2007
A Call for Action
Lately I have found a routine that works nicely in keeping the aliens at bay. While I still have them and some drainage (Hi, can you say let's invest our money in Always?!?!? Oh, the number of pads I go through for those vaginal/bottom leaks!), they are not as big and new ones do not surface as often. Here has been my plan of action:
Diet: South Beach Diet, Phase II
Exercise: Moderate walking 4-5 times per week
Skin treatments: Tea tree oil spray & bubble bath, some baths with Lush products containing honey
Hormone treatment: Natural Progesterone Cream
I have found over the last three months that if I do all of these things with minimal skipping or cheating, my HS is better controlled. However, just stopping one of these elements causes HS to come back in its ugliest, most painful form faster than you can say "I'll have a large Cherry Coke, please."
Over the last two weeks I became a little lax and my diet allowed a few too many sweets and I stopped the progesterone cream. Since then I have had several new aliens on my bottom and the threat of one under my arm, as I previously mentioned.
Aside from all of the pain, the quality of life is just abysmal. I felt more tired, achy, spaced-out, and lethargic. Nobody should have to live like that, so today, I am committing myself to the above-mentioned program again, though I am going to go back to Phase I of South Beach for at least a week. While I know we all need to be bad sometimes, I am challenging myself to stay with it religiously, with no more than one diet cheat per week (after this first week, of course), until we leave for vacation on August 18.
Diet: South Beach Diet, Phase II
Exercise: Moderate walking 4-5 times per week
Skin treatments: Tea tree oil spray & bubble bath, some baths with Lush products containing honey
Hormone treatment: Natural Progesterone Cream
I have found over the last three months that if I do all of these things with minimal skipping or cheating, my HS is better controlled. However, just stopping one of these elements causes HS to come back in its ugliest, most painful form faster than you can say "I'll have a large Cherry Coke, please."
Over the last two weeks I became a little lax and my diet allowed a few too many sweets and I stopped the progesterone cream. Since then I have had several new aliens on my bottom and the threat of one under my arm, as I previously mentioned.
Aside from all of the pain, the quality of life is just abysmal. I felt more tired, achy, spaced-out, and lethargic. Nobody should have to live like that, so today, I am committing myself to the above-mentioned program again, though I am going to go back to Phase I of South Beach for at least a week. While I know we all need to be bad sometimes, I am challenging myself to stay with it religiously, with no more than one diet cheat per week (after this first week, of course), until we leave for vacation on August 18.
Tuesday, June 12, 2007
That Feeling Deep Inside
If you have HS, you know the feeling my title mentions. THAT feeling. The one that threatens for a new alien to pop up at any moment, even though the feeling you have is just a little pressure right now. In fact, it's only pressure when pressure is put on it.
Well, after a good 7 years of dormancy under my arms I'm starting to get "that feeling" underneath my right arm. The pain is deep inside right now, at least 2 inches below the surface.
This could be nothing. OR. This could be devastating. I was just trusting my underarms again. Scarred as they are, they don't ooze or hurt any longer. I am praying that this pressure does not turn into pain or redness. I hope that this pressure gives up after realizing that there is nowhere else to scar in this area.
Hell, even when HS goes dormant for a little while my life is still antagonized with that feeling, reminding me that it can return to a somewhat healed area. That it probably will return to a somewhat healed area. And this is the worst part about that feeling inside, that it could or could not return and I have little control over it at this point.
Well, after a good 7 years of dormancy under my arms I'm starting to get "that feeling" underneath my right arm. The pain is deep inside right now, at least 2 inches below the surface.
This could be nothing. OR. This could be devastating. I was just trusting my underarms again. Scarred as they are, they don't ooze or hurt any longer. I am praying that this pressure does not turn into pain or redness. I hope that this pressure gives up after realizing that there is nowhere else to scar in this area.
Hell, even when HS goes dormant for a little while my life is still antagonized with that feeling, reminding me that it can return to a somewhat healed area. That it probably will return to a somewhat healed area. And this is the worst part about that feeling inside, that it could or could not return and I have little control over it at this point.
Friday, June 8, 2007
On Being Branded
"I guess I should buy one of those bathing suits with the skirt bottom soon."
"Oh, for our vacation to the Michigan beaches?"
"Yeah, but I don't want people to think I'm wearing the skirt bottom because I think my thighs or ass are too fat. I just want to cover my scars."
*********** *********** ***********
The above conversation was had with my husband during a walk at the park recently. Thinking about it, I wonder if other HS-ers chat like this with their spouses, friends, family, or even in their heads. Surely they do. But what really gets me thinking is how much the scars are a part of their daily lives. Are they as much of their lives as they are mine?
Did the sleeve of my shirt come up too high when I raised my hand?
Was the purple blemish on my breast exposed when I bent over?
Can she see the sink hole on my upper thigh through the slit in the restroom stall?
I'm in constant scar-check mode.
I have scars everywhere- under my arms, on my bottom, in the groin area, and on my breasts. Even my feet are plagued with scars due to being born with yet another anomaly. Scars are my life, yet for most of my life I've been running away from them. Buying clothing to hide them and not sharing them with the people I know. It is exhausting. While I am old enough to not care what people think in most areas of my life, I am still an awkward teenager when it comes to my scars. I'm constantly touching my scars the way I once obsessively ran my fingers over the red bumps on my teenage skin.
There is one scar that I have that I cannot hide. There is no denying the limp in my walk when I get tired. My feet are not like others' feet, so my stride differs when I can no longer put the effort into carrying my body. Inevitably, people ask, "Are you ok? You are limping. What happened?"
Deep down I know that their questions come from a place of sincere concern for me. They want to find out if I am fine, find out if I need anything. Yet, conjuring an answer to a question that seems so simple to the truly unafflicted ties me up in knots. How do I respond? How much detail do I give? How can I reassure them of my well-being? The answer to those questions varies depending upon my mood. Sometimes I shoot back a quick twisted ankle tale. Other times, I am frank about being born crippled and then, mostly, healed.
But with HS I go to greater efforts to hide it because I can. My exhaustion never gives me away. I do not wear tank tops or bathing suits around others. I do not raise my arms in fear of a shadow of a glimpse being eyed by another. A lot of time is spent wondering if I will accidentally let down my guard and then how someone would react.
How would I react to someone else's scars? After being branded with HS I have more compassion for others. So much is out of our control that to cringe from someone based on appearance is cruel and out of the question to me. Living with scars and the potential of adding even more each day gives you a certain level of tolerance for others. I make fewer snap-decisions about those around me, always thinking “You never know what’s going on under those clothes.”
Having earned my own scars early, I know that those who look at me with disgust will experience their own disfigurement. We are all branded in some way, be it on the skin, mind, spirit or heart. Life leaves its mark on us and I would guess that nobody escapes this world without their own scars. Because scars brand me with life, uniquely expressing that yes, I am alive, I am comfortable having scars. Sharing them? Well, that's between me, the bathing suit, and my therapist.
"Oh, for our vacation to the Michigan beaches?"
"Yeah, but I don't want people to think I'm wearing the skirt bottom because I think my thighs or ass are too fat. I just want to cover my scars."
*********** *********** ***********
The above conversation was had with my husband during a walk at the park recently. Thinking about it, I wonder if other HS-ers chat like this with their spouses, friends, family, or even in their heads. Surely they do. But what really gets me thinking is how much the scars are a part of their daily lives. Are they as much of their lives as they are mine?
Did the sleeve of my shirt come up too high when I raised my hand?
Was the purple blemish on my breast exposed when I bent over?
Can she see the sink hole on my upper thigh through the slit in the restroom stall?
I'm in constant scar-check mode.
I have scars everywhere- under my arms, on my bottom, in the groin area, and on my breasts. Even my feet are plagued with scars due to being born with yet another anomaly. Scars are my life, yet for most of my life I've been running away from them. Buying clothing to hide them and not sharing them with the people I know. It is exhausting. While I am old enough to not care what people think in most areas of my life, I am still an awkward teenager when it comes to my scars. I'm constantly touching my scars the way I once obsessively ran my fingers over the red bumps on my teenage skin.
There is one scar that I have that I cannot hide. There is no denying the limp in my walk when I get tired. My feet are not like others' feet, so my stride differs when I can no longer put the effort into carrying my body. Inevitably, people ask, "Are you ok? You are limping. What happened?"
Deep down I know that their questions come from a place of sincere concern for me. They want to find out if I am fine, find out if I need anything. Yet, conjuring an answer to a question that seems so simple to the truly unafflicted ties me up in knots. How do I respond? How much detail do I give? How can I reassure them of my well-being? The answer to those questions varies depending upon my mood. Sometimes I shoot back a quick twisted ankle tale. Other times, I am frank about being born crippled and then, mostly, healed.
But with HS I go to greater efforts to hide it because I can. My exhaustion never gives me away. I do not wear tank tops or bathing suits around others. I do not raise my arms in fear of a shadow of a glimpse being eyed by another. A lot of time is spent wondering if I will accidentally let down my guard and then how someone would react.
How would I react to someone else's scars? After being branded with HS I have more compassion for others. So much is out of our control that to cringe from someone based on appearance is cruel and out of the question to me. Living with scars and the potential of adding even more each day gives you a certain level of tolerance for others. I make fewer snap-decisions about those around me, always thinking “You never know what’s going on under those clothes.”
Having earned my own scars early, I know that those who look at me with disgust will experience their own disfigurement. We are all branded in some way, be it on the skin, mind, spirit or heart. Life leaves its mark on us and I would guess that nobody escapes this world without their own scars. Because scars brand me with life, uniquely expressing that yes, I am alive, I am comfortable having scars. Sharing them? Well, that's between me, the bathing suit, and my therapist.
Thursday, June 7, 2007
My Story
Welcome to this site!
Either you are here because you have been googling Hidradenitis (HS) because you want to put a name to your suffering, you are a member of one of my HS groups, or you (hopefully!! maybe!!) are a doctor researching HS.
It doesn't matter why you are here. I am just happy to have you.
When I was 13 I was very active, playing softball on multiple competitive teams throughout the summer. Suddenly, under my arms I started to have these red bumps that were tender to any pressure or touch. Eventually, these bumps grew into massive, golf-ball sized monstrosities and, finally, they would leak pus.
Initially, I thought these were a result of the friction from playing softball. After all, I was a fast-pitch softball pitcher. However, once winter came and my games were fewer and fewer, these bumps were coming just as ferociously as before. Concerned, my mother took me to a doctor who put me on antibiotics.
This didn't help.
Accepting this pain as a part of life, my life, I continued on until I started to get them in my groin area. I continued searching for a doctor who could assist me beyond a script for antibiotics, but nobody was familiar with this condition. In fact, it wasn't until I was 16 that a name was put to it by an elderly doctor who matter-of-factly told me the only cure was antibiotics. A little shy, I always took the prescription, but never filled it. Instead, I just looked for another doctor.
This pattern followed me through college, moving to Paris, France, moving back to the U.S., through graduate school, getting married, and the birth of my first child. None of the doctors I have met know anything, but were always happy to provide me with a prescription. One of my doctors, the same wonderful woman who delivered my son, was very sympathetic, but again, she did not know anything.
Because my "aliens" were now popping up on my breasts and bottom as well, I finally decided to take my health into my own hands and did a lot of online research. I found HS-USA as well as the HS Natural Healing yahoo group. These two groups have given me more comfort than I can express. I am now semi-controlling my HS by lowering my stress levels, exercising, eating whole grains instead of white sugar and flour, using tea tree oil products directly on the lesions, natural progesterone, and relying on my other sufferers for advice, and sometimes even a shoulder.
I still have days where I am in a lot of pain and feel limited. And I definitely, nearly every day, feel the pain of having a scarred body. I am getting closer to self-acceptance, but it is all a process, really. This is exactly why I have started this site.
Do you have your own site? If you share it in the comments section, I'll link to you. Feel free to link here or share this site as well.
Either you are here because you have been googling Hidradenitis (HS) because you want to put a name to your suffering, you are a member of one of my HS groups, or you (hopefully!! maybe!!) are a doctor researching HS.
It doesn't matter why you are here. I am just happy to have you.
When I was 13 I was very active, playing softball on multiple competitive teams throughout the summer. Suddenly, under my arms I started to have these red bumps that were tender to any pressure or touch. Eventually, these bumps grew into massive, golf-ball sized monstrosities and, finally, they would leak pus.
Initially, I thought these were a result of the friction from playing softball. After all, I was a fast-pitch softball pitcher. However, once winter came and my games were fewer and fewer, these bumps were coming just as ferociously as before. Concerned, my mother took me to a doctor who put me on antibiotics.
This didn't help.
Accepting this pain as a part of life, my life, I continued on until I started to get them in my groin area. I continued searching for a doctor who could assist me beyond a script for antibiotics, but nobody was familiar with this condition. In fact, it wasn't until I was 16 that a name was put to it by an elderly doctor who matter-of-factly told me the only cure was antibiotics. A little shy, I always took the prescription, but never filled it. Instead, I just looked for another doctor.
This pattern followed me through college, moving to Paris, France, moving back to the U.S., through graduate school, getting married, and the birth of my first child. None of the doctors I have met know anything, but were always happy to provide me with a prescription. One of my doctors, the same wonderful woman who delivered my son, was very sympathetic, but again, she did not know anything.
Because my "aliens" were now popping up on my breasts and bottom as well, I finally decided to take my health into my own hands and did a lot of online research. I found HS-USA as well as the HS Natural Healing yahoo group. These two groups have given me more comfort than I can express. I am now semi-controlling my HS by lowering my stress levels, exercising, eating whole grains instead of white sugar and flour, using tea tree oil products directly on the lesions, natural progesterone, and relying on my other sufferers for advice, and sometimes even a shoulder.
I still have days where I am in a lot of pain and feel limited. And I definitely, nearly every day, feel the pain of having a scarred body. I am getting closer to self-acceptance, but it is all a process, really. This is exactly why I have started this site.
Do you have your own site? If you share it in the comments section, I'll link to you. Feel free to link here or share this site as well.
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