DO NOT assume because I look well that I feel well. Looks can be very deceiving. Many days I look great, but I feel terrible.
DO NOT tell me you know how I feel. No one knows how anyone else feels. Two people with the same disease may feel totally different. We all have varying thresholds of pain, and pain cannot be measured.
DO NOT tell me about your great-aunt GERTRUDE and her HS, and how well she managed in spite of it. I am not AUNT GRETRUDE, and I am doing my best.
DO NOT tell me, " It could be worse. Yes, it could be, but I don't need to be reminded.
DO NOT decide what I am capable of doing. HS doesn't affect the brain. Allow me to decide what activities I can participate in. There may be times I might make the wrong decision, and if I do, I'll know it soon enough.
DO NOT be upset that you cannot ease my pain. It won't do any good for both of us to be miserable.
DO NOT ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.
DO NOT assume because I did a certain activity yesterday that I can do it today. HS is ever- changing.
DO NOT tell me about the latest fad 'cure'. I want to be cured more than anything, and if there is a legitimate cure out there, my doctor will let me know.
DO learn everything you can about the disease. The more you know, the better equipped you will be to know what to expect.
DO realize I am angry and frustrated with the disease, not with you.
DO let me know you are available to help me when I ask. I'll be grateful. DO offer me lots of hugs and encouragement.
DO understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. HS is like that.
DO continue to invite me to all the activities. Just because I am not able to bike ride along with the gang does not mean I can't meet you for the picnic at the end of the trail. Please let me decide-
Monday, December 19, 2011
Friday, October 21, 2011
Been awhile.....
Haven't done a update is quite some time, so here it goes.......
First things first, I'm thrilled that my twin sis is prego with twins. A boy and a girl! I'm beyond thrilled, as being a Aunt is the best gift I've ever received. Spoiling my nieces and nephews is going to be even more expensive now with 5! :) She is due in Jan so prayers please!
My hidradenitis is a pain as usual. I just got medicare so a lot of doors are now open medically so I'll have more options to explore. I've put off any other surgery for now. I still need to have my arm and ear repaired, but honestly I just don't emotionally have anything left to give at the moment for this damn disease, and believe me surgery is equally emotional as it is physical. I've had an extremely difficult time lately looking at what the last surgery did to me. I really didn't think I would have such a hard time having the breast surgery, but since things didn't go as planned, any reconstruction is out of the question now, and the scars are MUCH worse than anticipated, I'm just messed up in the head. I hate having to see them everyday, most of the time I won't even look in the mirror at them. You can never truly prepare yourself for the aftermath of a surgery that takes part of being a woman away from you. So my warning to anyone considering breast surgery for their HS, think hard, I don't know if I would do it again, knowing what i know now, but in saying that, my surgery went WRONG, I had a ton of complications which left me unable to have reconstruction and with a lot more damage than a normal surgery. You just always believe that the "warnings" prior to surgery won't happen to you. They can. Other than that, I spent 6 days in the hospital last week with my HS, seems to be once every 4=6 months now I end up in the hospital for a week or so...... Never gets easier. The meds I'm taking for nerve damage have completely made my memory go. I'm seriously forgetting days, and people and events, even if I stop taking the meds my memory won't get better, seriously makes me cry. It just amazes me of how much this disease really takes from us.
I'm having gastric bypass in a couple months, doing all the pre testing and paper work process now. Should happen in Dec. I'm excited and nervous, but ready to get to a healthier me. I'm sure I'll be updating about that. :)
I wish all my HS sufferers, gentle hugs and pain free days....we need em! Prayers and love.
First things first, I'm thrilled that my twin sis is prego with twins. A boy and a girl! I'm beyond thrilled, as being a Aunt is the best gift I've ever received. Spoiling my nieces and nephews is going to be even more expensive now with 5! :) She is due in Jan so prayers please!
My hidradenitis is a pain as usual. I just got medicare so a lot of doors are now open medically so I'll have more options to explore. I've put off any other surgery for now. I still need to have my arm and ear repaired, but honestly I just don't emotionally have anything left to give at the moment for this damn disease, and believe me surgery is equally emotional as it is physical. I've had an extremely difficult time lately looking at what the last surgery did to me. I really didn't think I would have such a hard time having the breast surgery, but since things didn't go as planned, any reconstruction is out of the question now, and the scars are MUCH worse than anticipated, I'm just messed up in the head. I hate having to see them everyday, most of the time I won't even look in the mirror at them. You can never truly prepare yourself for the aftermath of a surgery that takes part of being a woman away from you. So my warning to anyone considering breast surgery for their HS, think hard, I don't know if I would do it again, knowing what i know now, but in saying that, my surgery went WRONG, I had a ton of complications which left me unable to have reconstruction and with a lot more damage than a normal surgery. You just always believe that the "warnings" prior to surgery won't happen to you. They can. Other than that, I spent 6 days in the hospital last week with my HS, seems to be once every 4=6 months now I end up in the hospital for a week or so...... Never gets easier. The meds I'm taking for nerve damage have completely made my memory go. I'm seriously forgetting days, and people and events, even if I stop taking the meds my memory won't get better, seriously makes me cry. It just amazes me of how much this disease really takes from us.
I'm having gastric bypass in a couple months, doing all the pre testing and paper work process now. Should happen in Dec. I'm excited and nervous, but ready to get to a healthier me. I'm sure I'll be updating about that. :)
I wish all my HS sufferers, gentle hugs and pain free days....we need em! Prayers and love.
Sunday, July 3, 2011
July Trip/Surgery Update/Weight Loss Update.
Anxious, stressed, excited...a few of the emotions running through me at the moment. In less than a week I'm going to be gone for 10 days, other than hospital stays I've never been away from home that long. I'll be in Lynchburg, VA., for about 3 days then we leave and drive over 8 hours and crash in Tennessee for the night then onward to Arkansas. I can't wait for the HS (hidradenitis suppurativa) gathering, it will be so nice to see so many people who have played a active roll in my everyday life over the past few years. Internet, phone calls, mail... is all wonderful, but to finally wrap my arms around them and look them in the eyes and say thank you for being such wonderful supporters over the past years and through all my hardship is going to be nothing short of amazing. I honestly feel very sad for those who can't make it. Until a few weeks ago I didn't think I was going, and I was beyond jealous and feeling left out. So for all those who won't be there, you will be with us in spirit. I want to give a special thanks to Dale Rickwood who is just an amazing woman..I will be spending my time in Lynchburg VA with her. Thanks also, to Mechelle, who has planned the entire HS Meet and Greet weekend and providing the hotel rooms making it possible for the trip. Tanya Owen is flying to the states from Australia as we speak, she will be in VA on the 12th. Good times ahead. Now, I just HAVE to stay healthy for another week. Best I stay in a bubble, huh?
As for a surgery update. As of about 3-4 weeks ago, I'm almost completely healed, FINALLY! I have no more open flesh however I still have large holes on my stomach from scaring. It could take years for my skin to grow back, or it may never. Unfortunately the scar tissue there is starting to cause some issues. I also have a small area where the internal sutures did not dissolve and they are growing out of my body and causing pain. Nerve damage is still HORRIBLE. But as I learned with my prior surgeries that just takes a LONG time. I'm happy to be feeling a bit more like myself these days. Good timing, too. I've postponed my next surgery until the end of August, but honestly may postpone it even further. I need to have it done, but this past year has been so tough and I just need a break. I'm off all my narcotic pain meds for the first time in over 5 years. Feels good to mentally be able to focus more..but still having physical pain, and withdrawal symptoms.
I've lost 32 pounds now, which has taken me 11 weeks thus far, slow going but going none the less. I'm thrilled about it, but honestly I gained 30 pounds throughout the past year with all the surgeries and recovery time, so I'm really just now back down where I was before. I'm motivated and will continue to fight the battle of the bulge. My medicare finally kicks in on Oct. 1, 2011, and I've already been "approved" for gastric bypass. I'm going to continue to do this on my own, and if I'm steady losing weight come Oct. I will not do it, however, if I stumble I will be having the surgery. I want to get healthy once and for all. My niece and nephews deserve a healthy aunt, I want to give them more.
As for a surgery update. As of about 3-4 weeks ago, I'm almost completely healed, FINALLY! I have no more open flesh however I still have large holes on my stomach from scaring. It could take years for my skin to grow back, or it may never. Unfortunately the scar tissue there is starting to cause some issues. I also have a small area where the internal sutures did not dissolve and they are growing out of my body and causing pain. Nerve damage is still HORRIBLE. But as I learned with my prior surgeries that just takes a LONG time. I'm happy to be feeling a bit more like myself these days. Good timing, too. I've postponed my next surgery until the end of August, but honestly may postpone it even further. I need to have it done, but this past year has been so tough and I just need a break. I'm off all my narcotic pain meds for the first time in over 5 years. Feels good to mentally be able to focus more..but still having physical pain, and withdrawal symptoms.
I've lost 32 pounds now, which has taken me 11 weeks thus far, slow going but going none the less. I'm thrilled about it, but honestly I gained 30 pounds throughout the past year with all the surgeries and recovery time, so I'm really just now back down where I was before. I'm motivated and will continue to fight the battle of the bulge. My medicare finally kicks in on Oct. 1, 2011, and I've already been "approved" for gastric bypass. I'm going to continue to do this on my own, and if I'm steady losing weight come Oct. I will not do it, however, if I stumble I will be having the surgery. I want to get healthy once and for all. My niece and nephews deserve a healthy aunt, I want to give them more.
Wednesday, May 25, 2011
Photo Update
This is the last photo I took, it was before they burned it. It is looking so good. I have to look back at my photos over the past 2 months and remind myself just how strong I really am. I never thought I would be facing all of this, but God doesn't give us anything we can't handle.
Slowly but Surely
My last surgeon appt. was overwhelming to say the least. They had to use silver nitrate sticks to burn down the open flesh to promote healing, my nerves are so sensitive right now while they are growing back, so it didn't feel good. It was pretty gross, it smoked up and you could smell it. YUCK! It burned, but luckily I'm feeling much better now. The charred skin came off with my bandage change. I'm hoping now it won't be long before its completely closed. They renewed my morphine and delaudid, and upped my nerve blocker (neurotin) to 600mg 3 times a day which I need because my nerves are screaming constantly but the meds just knock me out. She said I will hopefully adjust to them, so I guess in the meantime, I'll just be a zombie. We also planned my next surgery which will be to repair the skin under my left arm that healed wrong with my last surgery and also to remove my left ear lobe and reconstruct a new one by doing a skin graft. I had surgery on my ear in August but when she got in the disease was through and through, since I didn't sign consent for her to remove it and do a skin graft she just sewed it back up, and it looks all crazy, it healed down my neck and is preventing range of motion in my neck. The next surgery will be the end of June beginning of July. I should have a date in a few weeks. After this corrective surgery I will be taking a long break, I think. I need a long break, but it depends on how this disease continues to invade my body.
I did a radio interview about HS for a Australian radio show. It airs on June 28th and I'll have a link to it online afterwards. I think the interview went well, I hope others are pleased with how I depicted this disease. I will be recording again tonight for the show, she asked me to read a letter I wrote years ago, so that will be nice too.
Nothing new to update. I'm healing, slowly but surely!
I did a radio interview about HS for a Australian radio show. It airs on June 28th and I'll have a link to it online afterwards. I think the interview went well, I hope others are pleased with how I depicted this disease. I will be recording again tonight for the show, she asked me to read a letter I wrote years ago, so that will be nice too.
Nothing new to update. I'm healing, slowly but surely!
Tuesday, April 12, 2011
NO MORE CUTTING!
Had a surgeons appt yesterday and they did the last of the cutting, wooohooo! NO MORE CUTTING. Only now I wish I would start healing faster. I'm healing, just slowly. They now have me using the Dankins solution to soak the packing in, which burns like crazy, and just found out that its actually a bleach solution...DUR...no wonder it burns. I use the Dankins for two days then use the collagenase cream for a day then alternate back to the Dankins. I tried to think which I liked better, which one hurt less, and, well they both hurt like hell, so they are tied. I'm just happy to post the last picture where you will see new area cut. Hopefully from now on, there will be reports of healing and pictures of a smaller area! Please just keep praying for healing, faster healing even, or better yet a miracle!
As big as its going to get, yay!
This photo is just a different angle so you can see how deep the wound is a little better and how much healing needs to happen!
As big as its going to get, yay!
This photo is just a different angle so you can see how deep the wound is a little better and how much healing needs to happen!
Wednesday, April 6, 2011
April Update
I can't believe its been a month since my surgery, time went so fast, yet so slow, hard to explain. It has been a very trying month, a roller-coaster that I'd love to get off of. I remember seeing my incisions for the first time and thinking how great they looked, the sutures were in such clean lines, and I was so happy that at least the scarring would look "okay". Slowly but surely things unraveled and now I sit with holes in my stomach and things I used to call "boobs". I'm happy with the fact I can wear clothing and I have a "shape" that appears to be a chest, but looking at them gets more depressing every time. Unfortunately, that is the least of my worries right now, and something I'll obsess over when this is all taken care of, doesn't look like it will be anytime soon.
This past appointment with the surgeons they were supposed to remove the rest of the dying tissue, but they said it was "too hard" and they wanted to soften it some to make it easier to cut out. They gave me this cream called Santyl (Collagenase), which they said would soften the dead skin/tissue...and I have to say it works very, very well, maybe too well, too fast. My skin seems like it is melting, dressing changes are gross as the skin and tissue are coming off and out with the packing. Its hurting pretty bad. I was happy I was able to stop using the Dankins solution which is what I was soaking the packing in before and it burned horribly, but this stuff is just as bad, actually worse. The pain has intensified and every moment is tougher. Every dressing change mom and I say, "One down, only a million more to go" its said jokingly with a underlying sadness that this is life for God only knows how long. I said this morning to my mom as she came in for the dressing change "I hate this routine, it sucks, and I hate this life" All she could do is reply with a "I know". Not much else that can be said. This all sucks, and we literally have no clue how many months of this are ahead. I'm drained and tired from all the pain meds that I have to take, I try and cut back, but I always end up having to take the full doses. I'm emotionally at a breaking point. I just want to be able to do simple things without help, I need help with every single thing it seems, and I just want some independence back.
I have to seriously thank my mom, she is the one who takes care of me, who does all the simple things I want to do, but can't. I want to thank her for everything she does and I want to apologize that I brought this on her. I know its not my fault, I know I didn't ask for this to happen, but it did, and I'm sorry that its landed in her lap. She is amazing and I'm so lucky to have her. This has not been easy on her as she has had to become a nurse to me (A very good nurse, she even got props from my surgeons on how well she is doing). She never thought she'd be taking cream and using her fingers to rub down my open flesh. I see it in her face as she does it, how much it makes her sick, but more so how much it hurts her to see me hurt. I guess that is a mothers love, and there is nothing like it.
To end with I have to say, I know that I'm complaining all the time, and I'm miserable sounding, but that is my life right now, however, I am truly aware at how much worse things could be. Not for me, but just in life generally. I see the kids faces at the hospital when they roll or walk by who have cancer, and I see the face of the parents with that child. What could be worse?! I know how much worse life could be. Its easy for people to say that to you when you're facing something like this..."You know it could be worse." Yes, well, I also know it could be better. If that is selfish of me, then so be it. It could be better.
This is the most recent picture of the one wound. Monday the will cut the section at the bottom right, about 3 more inches round.
*If you read my blog then you know that I can't spell, my grammar sucks, I use run on sentences and there is nothing correct about my writing. I simply put my thoughts down. I'd also like to blame my pain meds. Thank you.
This past appointment with the surgeons they were supposed to remove the rest of the dying tissue, but they said it was "too hard" and they wanted to soften it some to make it easier to cut out. They gave me this cream called Santyl (Collagenase), which they said would soften the dead skin/tissue...and I have to say it works very, very well, maybe too well, too fast. My skin seems like it is melting, dressing changes are gross as the skin and tissue are coming off and out with the packing. Its hurting pretty bad. I was happy I was able to stop using the Dankins solution which is what I was soaking the packing in before and it burned horribly, but this stuff is just as bad, actually worse. The pain has intensified and every moment is tougher. Every dressing change mom and I say, "One down, only a million more to go" its said jokingly with a underlying sadness that this is life for God only knows how long. I said this morning to my mom as she came in for the dressing change "I hate this routine, it sucks, and I hate this life" All she could do is reply with a "I know". Not much else that can be said. This all sucks, and we literally have no clue how many months of this are ahead. I'm drained and tired from all the pain meds that I have to take, I try and cut back, but I always end up having to take the full doses. I'm emotionally at a breaking point. I just want to be able to do simple things without help, I need help with every single thing it seems, and I just want some independence back.
I have to seriously thank my mom, she is the one who takes care of me, who does all the simple things I want to do, but can't. I want to thank her for everything she does and I want to apologize that I brought this on her. I know its not my fault, I know I didn't ask for this to happen, but it did, and I'm sorry that its landed in her lap. She is amazing and I'm so lucky to have her. This has not been easy on her as she has had to become a nurse to me (A very good nurse, she even got props from my surgeons on how well she is doing). She never thought she'd be taking cream and using her fingers to rub down my open flesh. I see it in her face as she does it, how much it makes her sick, but more so how much it hurts her to see me hurt. I guess that is a mothers love, and there is nothing like it.
To end with I have to say, I know that I'm complaining all the time, and I'm miserable sounding, but that is my life right now, however, I am truly aware at how much worse things could be. Not for me, but just in life generally. I see the kids faces at the hospital when they roll or walk by who have cancer, and I see the face of the parents with that child. What could be worse?! I know how much worse life could be. Its easy for people to say that to you when you're facing something like this..."You know it could be worse." Yes, well, I also know it could be better. If that is selfish of me, then so be it. It could be better.
This is the most recent picture of the one wound. Monday the will cut the section at the bottom right, about 3 more inches round.
*If you read my blog then you know that I can't spell, my grammar sucks, I use run on sentences and there is nothing correct about my writing. I simply put my thoughts down. I'd also like to blame my pain meds. Thank you.
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