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| Feeling a little nervous waiting for the dr to come in |
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| Learned a little about the GI tract |
Boy has it been a difficult week. I saw the new GI specialist I was referred to and I've not felt so un-listened to in a very long time. He was out of the room before he even listened to my symptoms, so I followed him out and continued telling him what was going on, my god after waiting for 1.5 hours to see him, I wasn't going to leave without him hearing what I had to say. His response, well, why don't you try this new medication and I know it'll help you. I'll see you in a month. Naively I thought, maybe this "new" medication will help, but then realized when I picked up this "new" medication from the pharmacy that i've been on it before, with little to no benefit. So that was disappointing for several reasons.
While trying to remain as positive as I can while feeling this overwhelming sense of hopelessness and despair I've fallen in love with these two following quotes/mantras that I find super useful:
Neither of these quotes take away my pain nor my feelings and fears; however they help me realize that though I am struggling today (and boy has today been a hard hard hard day) but it makes me feel as though I will be able to draw some benefit out of this experience, deepen my self-exploration, and even more importantly be able to use this struggle to help others.
I wanted to share a post I stumbled across this afternoon, written about an endo sister who unfortunately could no longer handle the chronic pain and suffering of endometriois and killed herself. They interview her mother. I will copy and paste the interview here because I feel it is important to read and I will provide the link here.
Kristi An Rose suffered with endometriosis for 12 years, from 1997 until May 7, 2009 – the day she put a gun to her head and pulled the trigger.
It was a tragic ending of a life that held great promise, a life that is dearly missed, a life that could have been different if more in the medical community knew how debilitating the condition is, knew how much those with it suffer, and knew to take it more seriously, according to her mother, Sherill Rose Hill.
Nightmare begins
In school, Kristi was very outgoing. After graduating from Northwestern High School, she was a workaholic, said Sherill. Kristi worked several jobs and loved it. She always loved art, especially photography. But at the age of 17, she was already having medical problems.
“Kristi had really bad pains in her abdomen during her periods,” Sherill said. “It wasn’t your typical cramps. It was abnormal. I took her to a couple of doctors. They all said, ‘She’s a teenager trying to get attention.’ That wasn’t Kristi at all. I ended up taking her to Indianapolis to Dr. David McLaughlin of Women’s Specialty Health Centers. He said, ‘I think I know what’s wrong.’ He did a laparoscopy on Feb. 12, 1997. He said she had endometriosis. She was so thrilled to know what was going on because everybody had said she was making it up. She knew she wasn’t.”
Endometriosis “occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus – usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity,” according to the Endometriosis Association.
According to the Cleveland Clinic, symptoms of endometriosis can include but are not limited to the following:
•extremely painful (or disabling) menstrual cramps; pain may get worse over time•chronic pelvic pain (includes lower back pain and pelvic pain)•pain during or after sex•intestinal pain•painful bowel movements or painful urination during menstrual periods•heavy menstrual periods•premenstrual spotting or bleeding between periods•infertility
A few months later, Kristi had a microlaser laparotomy to vaporize the endometriosis.For the first time in years, she felt better. The pain was gone. She was happy. So was Sherill. It’s excruciating to watch your child in such pain, Kristi’s mom said.But then the endometriosis came back.
“The most recent studies have shown that endometriosis recurs at a rate of 20 to 40 percent within five years following surgery,” according to the Cleveland Clinic.Kristi’s came back in less than a year. She had another surgery to vaporize more of the tissue. It returned again.
In October 2000, Kristi and Sherill flew to Oregon to see a specialist. That doctor performed an oophorectomy, removing her left ovary. They found out that her fallopian tubes were packed with eggs. The endometriosis had prevented them from dropping down to the uterus monthly. Some would ask why Kristi didn’t have a hysterectomy. Doctors were hesitant to do that considering how young she was, Sherill said.
Besides, a hysterectomy is not a cure. Currently, there is no cure for endometriosis. Even having a hysterectomy or removing the ovaries does not guarantee that the endometriosis areas and/or the symptoms of endometriosis will not come back.
After the surgery in Oregon, Kristi was still in pain. “That was a big let down,” Sherill said. “We thought it would be great. We thought it’d be all over.”
Kristi was in constant pain. Her mom searched the Internet trying to find someone who could help. In 2003, Kristi and Sherill headed to Birmingham, Ala., to see a specialist at the Chronic Pelvic Pain Treatment Center.
“When we drove there, we had big hopes,” Sherill said. “By the time we walked out of there, they’d diagnosed her with five different problems – all related to endometriosis.”Severe pelvic congestive syndrome, vulvar vestibulitis, pelvic floor myalgia, irritable bowel syndrome, and abdominal wall trigger points.
Kristi also suffered from severe interstitial fibrosis of the bladder with chronic interstitial cystitis, a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.
The autopsy report gives a glimpse of just have pervasive the endometriosis was in Kristi’s body. It was on her liver. It was on her bowels. It was on her right kidney. Her right ovary had multiple cysts with large “chocolate cysts” (cysts that form when endometrial tissue invades an ovary), including one that had ruptured right before her death. Her fallopian tubes and right ovary had adhered to her uterus and pelvic wall. There were multiple fibrous pelvic adhesions.
“The doctor who did the autopsy said she had more endometriosis than anyone he’d ever seen,” Sherill said.
To say she was in pain is an understatement.
Kristi gave up. She was tired of doctors. She was tired of hospitals. She was tired of the pain.
In 2006, Sherill’s husband, Kristi’s stepfather, Mike Hill, developed cancer. Sherill was torn between helping her daughter who was suffering and her husband who was suffering.“I told her, ‘We’re going to find something for you,’ ” Sherill said. She pleaded with her daughter to hang in there until they found someone who could help. By then Kristi had no insurance. Her mom and stepdad helped pay for her medical expenses. Kristi hated that. She was independent. She wanted to take care of herself.
On April 16, 2009, Mike Hill died.
“Kristi said, ‘Look at him. He’s at peace. I would love to be at peace,” Sherill said.She began to worry about her daughter. She was sinking deeper and deeper into depression. A letter Kristi wrote on April 4 details her thoughts:
“I am so tired of the pain. It is enough to drive someone crazy. Having constant pain all the time is enough to want to give up. Enough to want to put my fragile body to rest. My body can’t take any more. My brain is past the breaking point. My heart is broken. God, my heart is broken.” “She was having grand mal seizures and pretty much bed-ridden then,” Sherill said of her daughter. “I got an uneasy feeling,” Sherill said. “So I hid the gun we kept in the house. Three days prior to her dying, she said, ‘I don’t want this anymore. They can’t fix me.’ I begged her. I said, ‘Please, let me see what I can find out. We’ll find something. She said no. ‘You’re not going to take me to another doctor, who will just take your money and say, ‘Well, we don’t know what else to do for her.’ ”
On May 7, 2009, Sherill was on her way home from a short trip to Kentucky and called her daughter.
“I told her I was almost home,” Sherill said, tears flowing down her cheeks. “She said, ‘I want you to remember one thing.’ I said, ‘What?’ She said, ‘I love you very, very, very, very, very, very, very, very, very, very much, Mom, and she just kept saying it. And I said I love you very, very, very much, too.’ ”
As Sherill drove home, Kristi searched the house and found the gun. She went outside to the back yard. She put the gun to her head. She pulled the trigger.
“When I got home, the police were in the yard,” Sherill said, sobbing. “I couldn’t pull into the driveway. My son, Tom, was there. I have another son, Michael. Tom had been in the house, and the neighbors came and got him. They said, ‘Your sister’s lying in the backyard.’ My son went out and got her. That’s just been very hard for him. He said, ‘I held her and she wasn’t talking.’ He said he kept thinking, ‘I gotta get this fixed before mom gets home.’ When I pulled up in the yard, as soon as I got out of the car, Tom grabbed a hold of me so tightly I could hardly breathe. He said, ‘Kristi shot herself.’ He held me so tight and he wouldn’t let go. I said, ‘Is she alive?’ He said, ‘Yes. They’re trying to get her stable.’ They wouldn’t let me go to the back yard. It seemed like forever and then they brought her to the front and put her in the ambulance. I yelled at her to fight like hell, and then we were on our way to the hospital. It wasn’t very long before they came out and said she didn’t make it. I said, ‘Can I see her?’ They let me see her, and when I looked at her I knew it was over for her. She suffered so much pain. Pain was a daily thing. The doctors didn’t take it as seriously as they could or should have.”There was no funeral. Kristi had always said she wanted to be cremated. “I was with her every step of the way, I wasn’t going to let her go through that by herself,” Sherill said. “I’m not going to let her down now. I went down to Greenwood where they do it. I kissed her. I talked to her and then I watched as they took care of her.”
Sherill broke down in tears.
Her daughter killed herself 20 days after her husband died. Twenty days after her daughter’s suicide, Sherill had a dream. In it, Kristi was smiling, running, happy, free.“That’s the one thing that’s kept me going because I know she’s not in pain anymore,” Sherill said, crying. “I’m just crying for myself now. I’m just so lonely I don’t know what to do with myself. I just don’t know what to do.”
What she has done, with her from her two sons, is have a fundraiser in Kristi’s memory, with the proceeds going to the Endometriosis Research Center.
“I wanted to help somebody else,” Sherill said. “So no one else has to live that way. I just want everybody to know how much pain she went through, how much she suffered, so this doesn’t happen to anybody else.”
Nightmare begins
In school, Kristi was very outgoing. After graduating from Northwestern High School, she was a workaholic, said Sherill. Kristi worked several jobs and loved it. She always loved art, especially photography. But at the age of 17, she was already having medical problems.
“Kristi had really bad pains in her abdomen during her periods,” Sherill said. “It wasn’t your typical cramps. It was abnormal. I took her to a couple of doctors. They all said, ‘She’s a teenager trying to get attention.’ That wasn’t Kristi at all. I ended up taking her to Indianapolis to Dr. David McLaughlin of Women’s Specialty Health Centers. He said, ‘I think I know what’s wrong.’ He did a laparoscopy on Feb. 12, 1997. He said she had endometriosis. She was so thrilled to know what was going on because everybody had said she was making it up. She knew she wasn’t.”
Endometriosis “occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus – usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity,” according to the Endometriosis Association.
According to the Cleveland Clinic, symptoms of endometriosis can include but are not limited to the following:
•extremely painful (or disabling) menstrual cramps; pain may get worse over time•chronic pelvic pain (includes lower back pain and pelvic pain)•pain during or after sex•intestinal pain•painful bowel movements or painful urination during menstrual periods•heavy menstrual periods•premenstrual spotting or bleeding between periods•infertility
A few months later, Kristi had a microlaser laparotomy to vaporize the endometriosis.For the first time in years, she felt better. The pain was gone. She was happy. So was Sherill. It’s excruciating to watch your child in such pain, Kristi’s mom said.But then the endometriosis came back.
“The most recent studies have shown that endometriosis recurs at a rate of 20 to 40 percent within five years following surgery,” according to the Cleveland Clinic.Kristi’s came back in less than a year. She had another surgery to vaporize more of the tissue. It returned again.
In October 2000, Kristi and Sherill flew to Oregon to see a specialist. That doctor performed an oophorectomy, removing her left ovary. They found out that her fallopian tubes were packed with eggs. The endometriosis had prevented them from dropping down to the uterus monthly. Some would ask why Kristi didn’t have a hysterectomy. Doctors were hesitant to do that considering how young she was, Sherill said.
Besides, a hysterectomy is not a cure. Currently, there is no cure for endometriosis. Even having a hysterectomy or removing the ovaries does not guarantee that the endometriosis areas and/or the symptoms of endometriosis will not come back.
After the surgery in Oregon, Kristi was still in pain. “That was a big let down,” Sherill said. “We thought it would be great. We thought it’d be all over.”
Kristi was in constant pain. Her mom searched the Internet trying to find someone who could help. In 2003, Kristi and Sherill headed to Birmingham, Ala., to see a specialist at the Chronic Pelvic Pain Treatment Center.
“When we drove there, we had big hopes,” Sherill said. “By the time we walked out of there, they’d diagnosed her with five different problems – all related to endometriosis.”Severe pelvic congestive syndrome, vulvar vestibulitis, pelvic floor myalgia, irritable bowel syndrome, and abdominal wall trigger points.
Kristi also suffered from severe interstitial fibrosis of the bladder with chronic interstitial cystitis, a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.
The autopsy report gives a glimpse of just have pervasive the endometriosis was in Kristi’s body. It was on her liver. It was on her bowels. It was on her right kidney. Her right ovary had multiple cysts with large “chocolate cysts” (cysts that form when endometrial tissue invades an ovary), including one that had ruptured right before her death. Her fallopian tubes and right ovary had adhered to her uterus and pelvic wall. There were multiple fibrous pelvic adhesions.
“The doctor who did the autopsy said she had more endometriosis than anyone he’d ever seen,” Sherill said.
To say she was in pain is an understatement.
Kristi gave up. She was tired of doctors. She was tired of hospitals. She was tired of the pain.
In 2006, Sherill’s husband, Kristi’s stepfather, Mike Hill, developed cancer. Sherill was torn between helping her daughter who was suffering and her husband who was suffering.“I told her, ‘We’re going to find something for you,’ ” Sherill said. She pleaded with her daughter to hang in there until they found someone who could help. By then Kristi had no insurance. Her mom and stepdad helped pay for her medical expenses. Kristi hated that. She was independent. She wanted to take care of herself.
On April 16, 2009, Mike Hill died.
“Kristi said, ‘Look at him. He’s at peace. I would love to be at peace,” Sherill said.She began to worry about her daughter. She was sinking deeper and deeper into depression. A letter Kristi wrote on April 4 details her thoughts:
“I am so tired of the pain. It is enough to drive someone crazy. Having constant pain all the time is enough to want to give up. Enough to want to put my fragile body to rest. My body can’t take any more. My brain is past the breaking point. My heart is broken. God, my heart is broken.” “She was having grand mal seizures and pretty much bed-ridden then,” Sherill said of her daughter. “I got an uneasy feeling,” Sherill said. “So I hid the gun we kept in the house. Three days prior to her dying, she said, ‘I don’t want this anymore. They can’t fix me.’ I begged her. I said, ‘Please, let me see what I can find out. We’ll find something. She said no. ‘You’re not going to take me to another doctor, who will just take your money and say, ‘Well, we don’t know what else to do for her.’ ”
On May 7, 2009, Sherill was on her way home from a short trip to Kentucky and called her daughter.
“I told her I was almost home,” Sherill said, tears flowing down her cheeks. “She said, ‘I want you to remember one thing.’ I said, ‘What?’ She said, ‘I love you very, very, very, very, very, very, very, very, very, very much, Mom, and she just kept saying it. And I said I love you very, very, very much, too.’ ”
As Sherill drove home, Kristi searched the house and found the gun. She went outside to the back yard. She put the gun to her head. She pulled the trigger.
“When I got home, the police were in the yard,” Sherill said, sobbing. “I couldn’t pull into the driveway. My son, Tom, was there. I have another son, Michael. Tom had been in the house, and the neighbors came and got him. They said, ‘Your sister’s lying in the backyard.’ My son went out and got her. That’s just been very hard for him. He said, ‘I held her and she wasn’t talking.’ He said he kept thinking, ‘I gotta get this fixed before mom gets home.’ When I pulled up in the yard, as soon as I got out of the car, Tom grabbed a hold of me so tightly I could hardly breathe. He said, ‘Kristi shot herself.’ He held me so tight and he wouldn’t let go. I said, ‘Is she alive?’ He said, ‘Yes. They’re trying to get her stable.’ They wouldn’t let me go to the back yard. It seemed like forever and then they brought her to the front and put her in the ambulance. I yelled at her to fight like hell, and then we were on our way to the hospital. It wasn’t very long before they came out and said she didn’t make it. I said, ‘Can I see her?’ They let me see her, and when I looked at her I knew it was over for her. She suffered so much pain. Pain was a daily thing. The doctors didn’t take it as seriously as they could or should have.”There was no funeral. Kristi had always said she wanted to be cremated. “I was with her every step of the way, I wasn’t going to let her go through that by herself,” Sherill said. “I’m not going to let her down now. I went down to Greenwood where they do it. I kissed her. I talked to her and then I watched as they took care of her.”
Sherill broke down in tears.
Her daughter killed herself 20 days after her husband died. Twenty days after her daughter’s suicide, Sherill had a dream. In it, Kristi was smiling, running, happy, free.“That’s the one thing that’s kept me going because I know she’s not in pain anymore,” Sherill said, crying. “I’m just crying for myself now. I’m just so lonely I don’t know what to do with myself. I just don’t know what to do.”
What she has done, with her from her two sons, is have a fundraiser in Kristi’s memory, with the proceeds going to the Endometriosis Research Center.
“I wanted to help somebody else,” Sherill said. “So no one else has to live that way. I just want everybody to know how much pain she went through, how much she suffered, so this doesn’t happen to anybody else.”
To contact Sherill about the fundraiser, send an e-mail to endokristi@yahoo.com
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I feel like this article is the perfect tool to show the intense impact that endometriosis, along with the stigmas, medical ignorance and emotional strains have on our lives. It is easy to get to the place where you want to give up, throw in the towel, and just stop having chronic pain. It is truly exhausting and overwhelming to have pain all the time, especially when diagnosed with a disease that most people have never heard of, mostly downplayed and the medical community itself even ignores our severe struggle and the battle we have to fight everyday to do things that everyone else does without much, if any, effort.
In my personal experience as of late, I've been in a place of not having much hope, NOT feeding suicidal, but having a feeling of "what's the point?" It is exhausting to try day in and day out to have a normal life while living in excruciating pain, that happens to be invisible to the outside world. Just because I can put make up on and look somewhat normal, if not pretty on occasion, that is not at all correlated to pain, or any lessening of pain. With my return to work approaching I am starting to get up earlier and put effort in everyday to get ready, whether or not I'm doing anything or going anywhere. I have got to get back in the habit of going into the world again, after nearly 6 weeks.
Right now with the pain I'm experiencing I am struggling holding onto hope. Actually to be more accurate, due to the nearly 20 year long stint with this disease, I feel I am no longer able to afford the cost of hope.
That is where I am now. Sigh.
Signing off with love and sending healing love to any sisters reading this,
Stephanie
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