It's been a while since I've written about anything. The year ended very sour in 2012 and didn't get any better in 2013.
I am finally waking up from what I would like to call a nightmare.
My hysterectomy was anything but your "run of the mill" surgery.
The news is that the endometriosis is still there.
I had a total hysterectomy, which did include the removal of both ovaries. Unfortunately there is still ovarian tissue left behind. I know my surgeon had a very difficult time, and the entire procedure took about seven hours.
I was extremely upset. I went into my own little world for a while.
Having a total hysterectomy, when you have no children, or even if you do have children, is no joke.
I feel cheated. I gave up so much, only for the disease to still be there?
My doctor ordered Lupron. My estrogen levels are still quite high, so despite the fact that I did have the surgery, I am not in menopause yet. The levels are substantially lower, but are not where they should be.
Endometriosis feeds and spreads with a high estrogen level, which is the reason I need to go on Lupron again.
Disappointing, and surreal is what I am feeling when it comes to this.
I am keeping the faith and praying every day and offering up any pain to God. There is really nothing else I can do, but live day by day with God's grace, everyday.
Thursday, August 22, 2013
Tuesday, December 4, 2012
After hysterectomy
I had a very difficult hysterectomy. It was a total of seven hours long. I knew that it was going to be difficult, and there were many possible things that could go wrong. I didn't really read up on what would happen "post-hysterectomy" though. I was more concerned with making it through the procedure itself.
I had severe endometriosis, which was complicated with another problem. I had no idea what was going to come just ten days later.
I had to have a "c-section" hysterectomy. The uterus was too large for a vaginal or laproscopic surgery. I know my surgeon did everything he could to avoid this situation. The problem, however didn't stop there.
I was sitting in bed relaxing, when I began to notice wetness on the bed. I didn't feel anything, but everything was soaked. I noticed that the fluid was coming out of the incision site. I went to the doctor and 79% of my incision opened. It was very deep. I was to spend the next two and a half months on a vac pack, that automatically took out any moisture out of the area, as to avoid infection. I was to endure two and a half months of a wonderful nurse coming to inspect my wound, clean it and pack it.
Here I am now. It has now been six months to the day!
My ordeal is not over.
I had an excess of estrogen, so I did not go into menopause right away. This is something you will not find on the internet. I have looked high and low, especially when the physical complications ended for me back in August.
I am now going through Menopause. I was not at all prepared for this. Anything at all that has been bothering me that was in anyway connected to the surgery and my illness has come up to the surface. I have become a lunatic. I am trying very hard to keep calm, now that I realize what these feelings are.
In addition, I am moving. Have major surgery, so obviously the next "smart" thing to do is move. I didn't really have a choice in the matter.
I have a terrible landlord who didn't care that there was mold growing in the basement. I spoke to him on several occasions, and then after getting a form of the flu and pleurasy, I decided to report him. Hey! It got the basement clean! But now he hates me and has been harassing me. He's a moron.
A home has been opened that I can rent. I have been packing only to realize last night that my incision site has gotten swollen, wet and red.
Today I have been lying in bed. I really can't do anything right now. I have been on my back for more than three years, and I don't want to go backward, only forward.
My point is this. When you have a hysterectomy, if at all possible, do not make any plans to do anything big. Six months later, I am still having issues.
I do not regret my decision at all. Don't get me wrong. I just wish I had realized what type of difficult, unnatural recovery this would be.
Read up on holistic things you can do to make the time go by easier. And if you can, don't plan anything stressful.
I am not saying this will happen to you, but it might. Everyone is different.
I had severe endometriosis, which was complicated with another problem. I had no idea what was going to come just ten days later.
I had to have a "c-section" hysterectomy. The uterus was too large for a vaginal or laproscopic surgery. I know my surgeon did everything he could to avoid this situation. The problem, however didn't stop there.
I was sitting in bed relaxing, when I began to notice wetness on the bed. I didn't feel anything, but everything was soaked. I noticed that the fluid was coming out of the incision site. I went to the doctor and 79% of my incision opened. It was very deep. I was to spend the next two and a half months on a vac pack, that automatically took out any moisture out of the area, as to avoid infection. I was to endure two and a half months of a wonderful nurse coming to inspect my wound, clean it and pack it.
Here I am now. It has now been six months to the day!
My ordeal is not over.
I had an excess of estrogen, so I did not go into menopause right away. This is something you will not find on the internet. I have looked high and low, especially when the physical complications ended for me back in August.
I am now going through Menopause. I was not at all prepared for this. Anything at all that has been bothering me that was in anyway connected to the surgery and my illness has come up to the surface. I have become a lunatic. I am trying very hard to keep calm, now that I realize what these feelings are.
In addition, I am moving. Have major surgery, so obviously the next "smart" thing to do is move. I didn't really have a choice in the matter.
I have a terrible landlord who didn't care that there was mold growing in the basement. I spoke to him on several occasions, and then after getting a form of the flu and pleurasy, I decided to report him. Hey! It got the basement clean! But now he hates me and has been harassing me. He's a moron.
A home has been opened that I can rent. I have been packing only to realize last night that my incision site has gotten swollen, wet and red.
Today I have been lying in bed. I really can't do anything right now. I have been on my back for more than three years, and I don't want to go backward, only forward.
My point is this. When you have a hysterectomy, if at all possible, do not make any plans to do anything big. Six months later, I am still having issues.
I do not regret my decision at all. Don't get me wrong. I just wish I had realized what type of difficult, unnatural recovery this would be.
Read up on holistic things you can do to make the time go by easier. And if you can, don't plan anything stressful.
I am not saying this will happen to you, but it might. Everyone is different.
Monday, November 12, 2012
Pain Medication
When a person has a disease such as endometriosis, it is extremely debilitating. In 2007, the very first hospital I was admitted to had a solution for this. They prescribed Percoset, or Vicodin. These medicatons do absolutely nothing for pain, but dull it enough so that it is tolerable.
We had a storm this week, Megastorm Sandy. My doctor that I see on a regular basis was not available to me. He wrote me out a prescription for Percoset and I was only too happy to take it. I did not have a problem falling asleep. I would moan and toss and turn a whole lot, but I was not really aware of any of it.
Not having the percoset to take, I started to have some very bad symptoms. Without realizing it, I was in withdrawal.
I stopped the percoset cold turkey. I had to do, what I had to do. I had terrible sweats. I actually haulucinated one night.
I could not sleep.
I felt irritable.
The pain that was normally an annoyance at night, and sometimes severe become intolerable suddenly.
I felt like my legs were on fire. The pain radiated from my ankles up to my knees. It was incredible pain, like I had never felt before.
I realized that my body was looking for percoset, and becaue I had not taken it for three days, my body began to react.
I will never take this medication or any narcotic ever again.
These medications are highly addictive and contain an insane amount of tyleonol, which is very bad for your liver. That can lead to a slew of other problems.
I am finally feeling better for the first time in two weeks.
I was able to sleep and rest without feeling like I was put into a drug induced sleep. I got REST.
Amazing.
Be careful of which drugs you take for pain. Even though a doctor or hospital may be the ones prescribing it, it is your body and the ultimate decision is yours.
By all means, do what you have to do, to have some semblance of a normal existance without absolute writhing pain.
Just remember that when you stop taking these types of medications, no matter how infrequent they may be taken, you will have a problem.
We had a storm this week, Megastorm Sandy. My doctor that I see on a regular basis was not available to me. He wrote me out a prescription for Percoset and I was only too happy to take it. I did not have a problem falling asleep. I would moan and toss and turn a whole lot, but I was not really aware of any of it.
Not having the percoset to take, I started to have some very bad symptoms. Without realizing it, I was in withdrawal.
I stopped the percoset cold turkey. I had to do, what I had to do. I had terrible sweats. I actually haulucinated one night.
I could not sleep.
I felt irritable.
The pain that was normally an annoyance at night, and sometimes severe become intolerable suddenly.
I felt like my legs were on fire. The pain radiated from my ankles up to my knees. It was incredible pain, like I had never felt before.
I realized that my body was looking for percoset, and becaue I had not taken it for three days, my body began to react.
I will never take this medication or any narcotic ever again.
These medications are highly addictive and contain an insane amount of tyleonol, which is very bad for your liver. That can lead to a slew of other problems.
I am finally feeling better for the first time in two weeks.
I was able to sleep and rest without feeling like I was put into a drug induced sleep. I got REST.
Amazing.
Be careful of which drugs you take for pain. Even though a doctor or hospital may be the ones prescribing it, it is your body and the ultimate decision is yours.
By all means, do what you have to do, to have some semblance of a normal existance without absolute writhing pain.
Just remember that when you stop taking these types of medications, no matter how infrequent they may be taken, you will have a problem.
Thursday, October 25, 2012
Pain Journals
When you have endometriosis, having pain is the part of the disease that becomes absolutely unbearable.
In my experience, doctors look at you like you have ten heads, if you tell them you are in excruciating pain. That is not enough for them.
It is very important to keep a pain journal. Keep track of this daily. The way I had mine was I set up different columns.
1. Day
2. Time of day
3. Activity I was doing
4. Duration of pain (how long it lasted)
5. Scale of 1 to 10, the severity of it.
6. Medication taken
7. How long it took for medication to take effect (if at all)
8. Pain scale of 1 to 10 1/2 hour after taking the medication
Also keep track of what foods you are eating! Remember that endometriosis is partly a hormonal imbalance that thrives on excess estrogen. For example, although soy products are supposed to be healthy, they are incredibly unhealthy for women with endometriosis.
I hope this helps! Namaste and don't give up!
In my experience, doctors look at you like you have ten heads, if you tell them you are in excruciating pain. That is not enough for them.
It is very important to keep a pain journal. Keep track of this daily. The way I had mine was I set up different columns.
1. Day
2. Time of day
3. Activity I was doing
4. Duration of pain (how long it lasted)
5. Scale of 1 to 10, the severity of it.
6. Medication taken
7. How long it took for medication to take effect (if at all)
8. Pain scale of 1 to 10 1/2 hour after taking the medication
Also keep track of what foods you are eating! Remember that endometriosis is partly a hormonal imbalance that thrives on excess estrogen. For example, although soy products are supposed to be healthy, they are incredibly unhealthy for women with endometriosis.
I hope this helps! Namaste and don't give up!
Thursday, October 18, 2012
Goodbye to Michael
It has been four months since I had the total hysterectomy. I see my scar and I think about the fact that it wasn't a child, but it was my uterus that was "delivered". It is hurtful. I don't think I will ever get over this hurt. It is something that I will carry. It is a sorrow that will always be with me, weighing down my heart. I have a small section in my bedroom for my "Michael Anthony". I know that if I had a child it would have been a boy. He would have had large dark eyes, and a cute little button nose. His smile would light up a room. I am upset that I will not get to meet this child, but I know in another time, in another life, I will meet him. I have a statue of St. Michael the Archangel, next to a candle and a teddy bear. I see it every day. I am greiving this loss. At the same time, it is allowing me to acknowledge his "existence" in some way. I have already loved a child I do not have.
With time, however this loss is becoming more of a memory and less of a cut that was just inflicted. I hope he knows that I did try to hang in there as long as I could. I tried to "ignore" the pain I was in, and pretend that it wasn't impacting my life. I knew I would eventually find a doctor who would help me. That help never came. The truth is that the help wasn't meant to be.
Thanks to a pervert in my life a long time ago, he saw to it that he would satisfy himself, and destroy my dreams of ever having my own blood family. He filled his need, while depleting my hopes. That is however, what my other blog is meant for. I will not get too much into this fact now.
Yes I had the endometriosis, but it was however complicated.
Well R.I.P. my little baby boy who was never meant to be. Ironic how the first name of my doctor is Michael.
With time, however this loss is becoming more of a memory and less of a cut that was just inflicted. I hope he knows that I did try to hang in there as long as I could. I tried to "ignore" the pain I was in, and pretend that it wasn't impacting my life. I knew I would eventually find a doctor who would help me. That help never came. The truth is that the help wasn't meant to be.
Thanks to a pervert in my life a long time ago, he saw to it that he would satisfy himself, and destroy my dreams of ever having my own blood family. He filled his need, while depleting my hopes. That is however, what my other blog is meant for. I will not get too much into this fact now.
Yes I had the endometriosis, but it was however complicated.
Well R.I.P. my little baby boy who was never meant to be. Ironic how the first name of my doctor is Michael.
Thursday, October 4, 2012
Mental Stress
I am realizing now how much I went through these past four to five years. The pain I was having due to the endometriosis and adenomyosis, was terrible. It affected me in so many ways. It reduced my quality of life to the point that I had to leave my job. I wasn't able to get together with friends. I alienated people that I truly cared about because I just didn't have patience for anything or anyone. I would overreact to so many things without realizing it. I did not know how to handle my illness.
An interesting point has come up though. When I think back to those years, I realize I remember very few specifics. For example, I was a teacher, but I don't remember my peers names. I can't remember my students names. Everything is a big blur to me right, when I think back in retrospect.
The mind is an amazing thing. It can shut down when you are at peaks of stress. It does this to protect you. The aftermath of this however, is very frightening.
I feel as though I floated through those days. I got through them every day, just to get them over with.
The fact is, I really liked teaching. The students for the most part were very sweet children. I loved to make things interesting and grade papers and give advice. I loved when a student came up to me to tell me their troubles. Maybe there was something I could say to them that would make them feel better. Teaching was the best time of my life. Amazing that I can remember so little of it.
The truth is, that I was not at my best when I was a teacher. I feel like I need to hit a reset button. I left my teaching position due to illness only after teaching summer school and one semester. I worked very hard to get that job, but endometriosis had other plans for me.
The endometriosis was planning on taking my life. I am fortunate to have finally found wonderful doctors. The endometriosis traveled to my liver, and could have destroyed it. What a bitch she is! She's out of my body now, and I plan to keep it that way. I plan to reclaim my life.
To anyone that I truly don't remember, I apologize. That period of my life is a huge blur, due to the high levels of stress I was under.
I can't wait to go back to the life I was meant to live. My primary doctor told me I would feel better after the surgery. He was right.
He also told me I would feel even better next year! I am sure he is right about that as well.
Mental stress put my mind on defense mode, so that I would not be traumatized by all that I had to endure. It is fine. I will not however, allow that to stop me forever.
An interesting point has come up though. When I think back to those years, I realize I remember very few specifics. For example, I was a teacher, but I don't remember my peers names. I can't remember my students names. Everything is a big blur to me right, when I think back in retrospect.
The mind is an amazing thing. It can shut down when you are at peaks of stress. It does this to protect you. The aftermath of this however, is very frightening.
I feel as though I floated through those days. I got through them every day, just to get them over with.
The fact is, I really liked teaching. The students for the most part were very sweet children. I loved to make things interesting and grade papers and give advice. I loved when a student came up to me to tell me their troubles. Maybe there was something I could say to them that would make them feel better. Teaching was the best time of my life. Amazing that I can remember so little of it.
The truth is, that I was not at my best when I was a teacher. I feel like I need to hit a reset button. I left my teaching position due to illness only after teaching summer school and one semester. I worked very hard to get that job, but endometriosis had other plans for me.
The endometriosis was planning on taking my life. I am fortunate to have finally found wonderful doctors. The endometriosis traveled to my liver, and could have destroyed it. What a bitch she is! She's out of my body now, and I plan to keep it that way. I plan to reclaim my life.
To anyone that I truly don't remember, I apologize. That period of my life is a huge blur, due to the high levels of stress I was under.
I can't wait to go back to the life I was meant to live. My primary doctor told me I would feel better after the surgery. He was right.
He also told me I would feel even better next year! I am sure he is right about that as well.
Mental stress put my mind on defense mode, so that I would not be traumatized by all that I had to endure. It is fine. I will not however, allow that to stop me forever.
Medicare
I watched the debates yesterday between President Obama and Mitt Romney. I was very disappointed in President Obama. He did not seem "there" to me, and wasn't really fighting back. I was so surprised and disappointed.
An issue that I am very interested in is medical insurance.
I am disabled. I have a connective tissue disease, without a specific name or treatment. I have severe arthritis in my spine and joints. I have radicular, and ulnar neuropathies. On top of this I also had Endometriosis and Adenomyosis.
I could not wait to get Medicare! I wasn't happy that all of this was going on, but I had such a problem with my old insurance. This doctor wouldn't accept it. That doctor was enrolled, but wasn't taking more patients. Blue Cross/Blue Shield PPO, made me wait SIX MONTHS before I was allowed to get treated for Endometriosis. This was right in the middle of having surgeries and being on dangerous medications. I had to stop everything for six months, because they would not pay for a pre-existing condition. I knew Medicare would be a great insurance for me.
I was right.
I was enrolled in medicare last year, and had the surgery I needed this year, after finding a doctor to work with. It was a very lucky thing for me to have had the hysterectomy done, as the endometrios was spreading to my liver. It was on my liver already, but no deep adhesion had formed yet, thankfully.
I owe it to Medicare, which enabled me to see the doctors I needed to see, have all the tests done, that I needed to have.
I still have medical issues, but I know what they are. There is no longer a "mystery" as to why my body seems to break down and I feel terrible pain. I still have the problems with arthrtis and so on, but I am allowed to be on whatever drugs I need. I can get whatever tests I need.
Mitt Romney thinks that private insurance is great? Private insurance is there to make money off of other peoples illnesses and misfortunes which should NOT be allowed.
I am living proof that Medicare is a great insurance. Medicare for everyone is a very good idea.
I am hoping that President Obama comes back to himself, and continues to fight for us. He fought so hard for this insurance to be passed, yet he seemed absent at the debate.
I am wondering if this idea was truly his. Are any of his ideas real, or is he just reading from a cue card?
An issue that I am very interested in is medical insurance.
I am disabled. I have a connective tissue disease, without a specific name or treatment. I have severe arthritis in my spine and joints. I have radicular, and ulnar neuropathies. On top of this I also had Endometriosis and Adenomyosis.
I could not wait to get Medicare! I wasn't happy that all of this was going on, but I had such a problem with my old insurance. This doctor wouldn't accept it. That doctor was enrolled, but wasn't taking more patients. Blue Cross/Blue Shield PPO, made me wait SIX MONTHS before I was allowed to get treated for Endometriosis. This was right in the middle of having surgeries and being on dangerous medications. I had to stop everything for six months, because they would not pay for a pre-existing condition. I knew Medicare would be a great insurance for me.
I was right.
I was enrolled in medicare last year, and had the surgery I needed this year, after finding a doctor to work with. It was a very lucky thing for me to have had the hysterectomy done, as the endometrios was spreading to my liver. It was on my liver already, but no deep adhesion had formed yet, thankfully.
I owe it to Medicare, which enabled me to see the doctors I needed to see, have all the tests done, that I needed to have.
I still have medical issues, but I know what they are. There is no longer a "mystery" as to why my body seems to break down and I feel terrible pain. I still have the problems with arthrtis and so on, but I am allowed to be on whatever drugs I need. I can get whatever tests I need.
Mitt Romney thinks that private insurance is great? Private insurance is there to make money off of other peoples illnesses and misfortunes which should NOT be allowed.
I am living proof that Medicare is a great insurance. Medicare for everyone is a very good idea.
I am hoping that President Obama comes back to himself, and continues to fight for us. He fought so hard for this insurance to be passed, yet he seemed absent at the debate.
I am wondering if this idea was truly his. Are any of his ideas real, or is he just reading from a cue card?
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