A Letter to People Without Chronic Pain
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN
**********************************
Saturday, December 24, 2011
Monday, December 19, 2011
THE SCARS OF LIFE
THE SCARS OF LIFE
Some years ago, on a hot summer day in south Florida ,
a little boy decided to go for a swim in the old
swimming hole behind his house. In a hurry to dive
into the cool water, he ran out the back door, leaving
behind shoes, socks, and shirt as he went.
He flew into the water, not realizing that as he swam
toward the middle of the lake, an alligator was
swimming toward the shore.
His father working in the yard saw the two as they got
closer and closer together. In utter fear, he ran
toward the water, yelling to his son as loudly as he
could.
Hearing his voice, the little boy became alarmed and
made a U-turn to swim to his father. It was too late.
Just as he reached his father, the alligator reached
him. From the dock, the father grabbed his little boy
by the arms just as the alligator snatched his legs.
That began an incredible tug-of-war between the two.
The alligator was much stronger than the father, but
the father was much too passionate to let go. A farmer
happened to drive by, heard his screams, raced from
his truck, took aim and shot the alligator.
Remarkably, after weeks and weeks in the hospital, the
little boy survived. His legs were extremely scarred
by the vicious attack of the animal. And, on his arms,
were deep scratches where his father's fingernails dug
into his flesh in his effort to hang on to the son he
loved.
The newspaper reporter who interviewed the boy after
the trauma, asked if he would show him his scars. The
boy lifted his pant legs. And then, with obvious
pride, he said to the reporter, "But look at my arms.
I have great scars on my arms, too. I have them
because my Dad wouldn't let go."
You and I can identify with that little boy. We have
scars, too. No, not from an alligator, but the scars
of a painful past. Some of those scars are unsightly
and have caused us deep regret. But, some wounds, my
friend, are because God has refused to let go. In the
midst of your struggle, He's been there holding on to
you.
The Scripture teaches that God loves you. You are a
child of God. He wants to protect you and provide for
you in every way But sometimes we foolishly wade into
dangerous situations, not knowing what lies ahead. The
swimming hole of life is filled with peril - and we
forget that the enemy is waiting to attack. That's
when the tug-of-war begins - and if you have the scars
of His love on your arms, be very, very grateful. He
did not and will not ever let you go.
Please pass this on to those you love. God has blessed
you, so that you can be a blessing to others. You just
never know where a person is in his/her life and what
they are going through.
Never judge another persons scars, because you don't
know how they got them. Also, it is so important that
we are not selfish, to receive the blessings of these
messages, without forwarding them to someone else.
Right now, someone needs to know that God loves them,
and you love them, too- enough to not let them go.
Some years ago, on a hot summer day in south Florida ,
a little boy decided to go for a swim in the old
swimming hole behind his house. In a hurry to dive
into the cool water, he ran out the back door, leaving
behind shoes, socks, and shirt as he went.
He flew into the water, not realizing that as he swam
toward the middle of the lake, an alligator was
swimming toward the shore.
His father working in the yard saw the two as they got
closer and closer together. In utter fear, he ran
toward the water, yelling to his son as loudly as he
could.
Hearing his voice, the little boy became alarmed and
made a U-turn to swim to his father. It was too late.
Just as he reached his father, the alligator reached
him. From the dock, the father grabbed his little boy
by the arms just as the alligator snatched his legs.
That began an incredible tug-of-war between the two.
The alligator was much stronger than the father, but
the father was much too passionate to let go. A farmer
happened to drive by, heard his screams, raced from
his truck, took aim and shot the alligator.
Remarkably, after weeks and weeks in the hospital, the
little boy survived. His legs were extremely scarred
by the vicious attack of the animal. And, on his arms,
were deep scratches where his father's fingernails dug
into his flesh in his effort to hang on to the son he
loved.
The newspaper reporter who interviewed the boy after
the trauma, asked if he would show him his scars. The
boy lifted his pant legs. And then, with obvious
pride, he said to the reporter, "But look at my arms.
I have great scars on my arms, too. I have them
because my Dad wouldn't let go."
You and I can identify with that little boy. We have
scars, too. No, not from an alligator, but the scars
of a painful past. Some of those scars are unsightly
and have caused us deep regret. But, some wounds, my
friend, are because God has refused to let go. In the
midst of your struggle, He's been there holding on to
you.
The Scripture teaches that God loves you. You are a
child of God. He wants to protect you and provide for
you in every way But sometimes we foolishly wade into
dangerous situations, not knowing what lies ahead. The
swimming hole of life is filled with peril - and we
forget that the enemy is waiting to attack. That's
when the tug-of-war begins - and if you have the scars
of His love on your arms, be very, very grateful. He
did not and will not ever let you go.
Please pass this on to those you love. God has blessed
you, so that you can be a blessing to others. You just
never know where a person is in his/her life and what
they are going through.
Never judge another persons scars, because you don't
know how they got them. Also, it is so important that
we are not selfish, to receive the blessings of these
messages, without forwarding them to someone else.
Right now, someone needs to know that God loves them,
and you love them, too- enough to not let them go.
10 Things I’ve Learned From Living With Chronic Illness
10 Things I’ve Learned From Living With Chronic Illness
1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.
2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.
3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.
4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.
5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)
6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.
7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.
8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)
9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.
10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.
(http://www.rheumatoidarthritisguy.com/2011/11/10-things-ive-learned-from-living-with-chronic-illness/)
1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.
2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.
3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.
4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.
5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)
6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.
7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.
8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)
9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.
10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.
(http://www.rheumatoidarthritisguy.com/2011/11/10-things-ive-learned-from-living-with-chronic-illness/)
Do's and Don'ts of Chronic Pain
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-
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-
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.
Thursday, March 24, 2011
Tuesday, March 22, 2011
Not for the squeamish. Update
As many of you know I've been suffering with ulcers from my breast surgery on both sides, things just kept getting worse, 2 ER visits, its been a mess. I finally went in for my scheduled appt. and got the dreaded news of dead/dying tissue. They were going to schedule surgery but decided to do it right then. They numbed me up and cut away the tissue they kept my face turned/covered and mom said it would be awhile before she'd let me look at it. It hurts so bad, the bigger side is the right side but they did both sides. Its going to take a while to heal. It is very painful, obviously, but they upped my pain meds to 100mg of morphine every 8 hours and 12mg delaudid every 3 hours and 2mg xanax as needed. Good meds, but never enough. I'm freaking out pretty bad, one bad infection and it could be it for me. I'm very scared with my bad immune system from the HS. Its can go bad very quickly. SO please pray for me. I'm tired and not sleeping like I should just have so much on my mind, but I'm so exhausted this morning I might just drop out of it. I convinced mom to do some pictures this morning during dressing change to share, I still will not look at this on my body but a pic helps seperate it. She only took a couple. Again please just pray or send me good vibes love while I fight and go through this, its incredibly painful and scary. Lots of love.
Saturday, March 19, 2011
Sunday, March 13, 2011
Ulcer photos
Right Breast Ulcer
Left Breast Ulcer
Few other surgery pics, hard to post breast photos, cause I'm trying to crop pics correctly.
Left Breast Ulcer
Few other surgery pics, hard to post breast photos, cause I'm trying to crop pics correctly.
Saturday, March 12, 2011
Can you hear me SCREAMING?
All I do is complain, I know everyone is so sick of it, dammit I'm sick of it too, but I sick of feeling it even more. This surgery has become a nightmare. I formed two ulcers one under each breast so I've been having to do dressing changes. Well during a dressing change on Thursday night, as soon as we took the bandage of it looked like a horror film it started spewing this yellow liquid and blood mixture everywhere, the moment we put a new THICK bandage one, literally within sec. it was saturated. So we scrambled to get some clothes on me, and bandage it up thick then mom ran to get ready and off to the hospital, by the time we got to the hospital, which at night only took maybe 10 mins, it had soaked threw all the bandages, my shirt, my coat the arm of my coat, it was everywhere. Luckily, since I looked like I just came off the set of a horror flick, or was just shot, they took me back immediately. I'm not going to go through all the crap they did and didn't do at the hospital, but in the end, they took the drainage tubes out to early at last weeks appointment. The fluid didn't have anywhere to go, to it formed some type of pocket, and then it found a opening at the ulcer to have the fluid burst out of. Nice, right. They told me I'd just have to keep bandages on it. Luckily the burst only lasted about 6 more times, now we are down to just a steady leaking, out of BOTH breast ulcers. So I"m having to change bandages on each breast about every hour. Its horrible. On top of that the moisture from this liquid has made the ulcer openings larger. The one on the right is probably almost a 3 inch opening now. All my pain meds where wonderful at first, but now they aren't touching a thing, I had already lowered some, and not going to up them again, which means they are going to have to find something else to help. I don't know what else, but something. I'm in constant horrible pain. I just want to cry all the time, but I honestly have no tears left. Friends all made visits last weekend, so of course I'm alone this weekend and might be for the next 3 months. I hope someone comes back. But I understand I'm not fun. This sucks right now. Maybe I'm just looking for sympathy, but who cares, wouldn't you in my position?. I think I'm just looking for empathy cause right now I just feel so lost, so alone, so sad. I knew this wouldn't be easy, but I never imagined it would be this hard.
Saturday, March 5, 2011
4 days post op updateit
Just wanted to update for myself really. Put it in writing. I can't believe its only been 4 days, seems like I've been drowning in pain for much longer. Doctors said it would get worse before it gets better, they were right. The swelling hasn't stopped, and the bruising gets worse by the hour. I'm just ready to be off that ride, and get on the healing train. I'm still in agony but my body has adjusted to the pain, I don't scream in anguish everytime I stand up, although it feels the same I'm adjusting, inside I still scream. I've gotten the nicotine patch so that I don't have to go up and down the stairs everytime I need a smoke, I still do a couple times a day, but thats because I go down to get food or a drink and I smoke, but I'm down to only a few a day, and no I don't plan on quitting, its simply because it hurts to go down the steps. So ya'll who know me, know I'm in pain if I'm giving up smoke breaks lol. Every surgery I end up doing to much to soon, I had a bit of that the day after I got home, and paid for it. I have to remember that I'm on pain meds that are doing their job. Just because I feel a bit better doesn't mean I am, just means I'm staying on top of my meds correctly. Dr. said stop taking a dose and see how ya feel. Ummm. no thanks. I'm on so many meds, it keeps me very out of it and loopy. I don't mind, I sleep all the time, but that is good for my body. I have my first post op on monday, will see how that goes, I'm a little worried, thats when they do their poking and prodding and pulling me every which way, sucks. They will adjust my meds then, or just write the same things. The Ativan has been a life saver it really helps me sleep and keeps me from crying every 5 minutes which I needed, the crying only made me hurt worse, but I couldn't stop. Its a very emotionally and physically thing to face so my tears aren't unjustified. Anywyas just rambling to my self, I'm slipping off into sleepy land right now, so I'll write more later. Bur before I go, I have to say that the HS community, my HS family, my family, and my friends have been nothing but amazing. I appreciate all the kindness and love. It keeps me going. Love you.
Thursday, March 3, 2011
Surgery 3 fast update
Surgery went well. I'm so happy to say that my breast look good, not deformed at all like I thought I would be. The surgeons ended up going with a different plan once they got in there. However with how good they look, comes the HORRIBLE pain. I never knew someone could survive in this much pain. Its truly agonizing. Its from the stretching of my skin, and bruising...etc. They swept me out the door still since I have no reg. insurance but they gave me enough pain meds to keep me knocked out and I'm literally drifting in and out of consciousness even now, this is constant. I'm on Fentanyl patch 75 mcg every two days, 60 mg, MScontin, which is time release morphine every 12 hours, 16mg of delaudid every 3 hours, ativan whenever I want it, and countless other meds such as antibiotics, stomaach meds...etc. I'll post a couple pics then I'm done online for a few days.
This is my left ear, they removed the back of my ear then did skin flaps from my neck.
This is my right breast area, left looks the same pretty much. You can't tell in this pic, but there are incisions going all the way across the bottom of my breast as well. All the dark lines are incisions, and you can see the bruising, which is spreading. The skin is so tight its unbearable. I also have two drainage tubes one on each side of my breast.
This is my left ear, they removed the back of my ear then did skin flaps from my neck.
This is my right breast area, left looks the same pretty much. You can't tell in this pic, but there are incisions going all the way across the bottom of my breast as well. All the dark lines are incisions, and you can see the bruising, which is spreading. The skin is so tight its unbearable. I also have two drainage tubes one on each side of my breast.
Saturday, January 15, 2011
Frustrated.
I'm almost 5 months post op and I just got out of bandages a couple weeks ago, today I wake up and I'm back in bandages again. My last surgery was such a mess, I can't wait to have it fixed, but it will be at least July before that can happen since I have surgery again March 1st. The incision keeps getting ulcers and getting red and splitting. I'm tired. Urgg.
I just took this, doesn't it look horrible for 5 MONTHS later?!
I just took this, doesn't it look horrible for 5 MONTHS later?!
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