In my appointment with Dr. Grogg, he also told me of a possible treatment, or at least a way that might prove the existence of Adenomyosis. The treatment would involve taking shots of Lupron, a drug that basically shuts down the reproductive system and mimics menopause. However, the hormones that the reproductive system makes also helps keep bones calcified, so treatment can’t be for more than 6 months. My current OB/GYN felt that I should continue birth control pills for several more months, as they are supposed to help. I didn’t see what harm a few more months would do when I’d already been on them for years. Luckily, the other OB/GYN HMO doctor (only 2 of them with my current plan) agreed to treat me immediately and I started seeing him from then on.
It was amazing – gradually, over a month or so, I started to notice a difference. I started feeling “high” on my strong painkillers, so I began reducing my dosages each time I noticed this. Eventually, I was able to ease off all painkillers. I was thrilled, but relief from pain was short-lived. I was then taken off Lupron and the pain did return within a month as my reproductive system began to function again. I was at least thankful to have confirmation and the new HMO doctor offered to do my hysterectomy himself. By that time, I think it was early December and I decided I still wanted to wait for Dr. Grogg, the doctor I knew and trusted most. In my extensive organ testing, I had my intestines tested (endoscopy), kidneys tested (dye through out my system and x-ray), back examined (x-ray, physical therapy, specialist opinion) and my mental state evaluated. I had all my medical records sent to Dr. Grogg’s office and scheduled the initial appointment with him for January 2, with surgery set for January 27. With the mountain of paperwork and testing, the approval from the new insurance went through without any complication.
I thought I had made peace with not being able to have children. During this whole process, my husband and I had been discussing the issue and he fully supported me. We both discovered that we didn’t want children. For me, the issue of having children was one of those unconscious assumptions – you just assume that you’re going to someday meet someone, get married and have kids. It’s what everyone does. But on closer inspection, I realized that I enjoy my freedom and don’t really want to be tied down. I like doing things with my husband. We have many common interests – interests that children can’t be a part of, such as scuba diving, whitewater rafting, motorcycle riding and so on.
However, now that all the fight was over and I had time to contemplate the upcoming hysterectomy, the reality of not being able to have children hit me. There’s a huge difference between choosing to not have kids and not being able to. I continued to grieve for a period of time after the surgery. People would try to console me by saying, “You can always adopt.” I know they are only trying to help, but it’s not the same.
I realized that I only felt the urge to have a family for brief periods (maybe a half hour) every once in a while – usually when I’m forced to face the issue, such as at baby showers. This DOES NOT justify having a child and attempting to care for it for 18 years. The desire to have someone to take care of you when you’re old is not a good reason to have a child, either. There is no guarantee that they will want to care for you.
I was nervous that Adenomyosis may not be the problem, but at least surgery would prevent further reproductive problems. I was nervous about how this would change my sexual relations, although my husband reassured me that this did not matter, he just wanted me to have better quality of life. In the end, the surgery was a success and I was once again able to take myself off the pain meds before the doctors even required me to. It took around 1 1/2 years for me to feel like I was myself again as far as strength goes. Even now, when I get really sick or run-down my scars still hurt a little. I take hormones daily and all other functions are normal. The negatives – increased risk of Osteoporosis. The positives – no more PMS and no going through menopause for me!
I’m so very fortunate and thankful that this problem was curable. It is wonderful to be able to get up in the morning and say, “I feel good.” Even on my bad days now, I try to step back and remind myself that it could always be worse. The best part is, I now understand my mother more and we get along much better. We had talked some things out before I got sick, but I never understood how exhausting pain is and always thought she was being lazy. For that, and many other misunderstandings, I’m so very sorry. She had suffered from reproductive problems for quite some time. She also has a very demanding job. Mom didn’t care for me through the whole illness, but was there for me for several weeks after my surgery. She and my husband split schedules. However, it really was a healing experience all the way around and I appreciate people and life so much more now. I want to capture every moment and opportunity – and am now learning that I have to pace myself! I want to feel every grain of sand as I walk along the beach, feel each tiny droplet of water hit my cheek, and notice every distinct detail around me. I get overwhelmed in my excitement sometimes. It’s strange that I’m actually thankful for getting sick! There are lessons to learn and grow from, even when bad things happen. It’s about finding the silver lining, which sometimes I can’t see until much later after the event.
Another amazing happening is that I’ve discovered so many new hobbies from being ill. After I had my drop in hope, I began to fight back. I figured I could sit around the house and contemplate killing myself, or I could get out and do something I enjoyed. That year, my husband and I started tent camping, canoeing, rafting, antiquing, gardening, caving, watching hockey and so on. I know it sounds crazy and yes; I was in extreme pain and very wiped out. I really had to work on timing my pills and how much energy I would have to do things. There were many times when I would cry for a good long while, then pull myself together and go do whatever might give me some happiness and distraction. It was not easy. My mood swings were horrible, too. Some things I probably shouldn’t have done. I drew the line at scuba diving – much too dangerous to risk doing at that time. We also probably shouldn’t have traveled beyond what cash would allow, as this was a costly treatment. But it helped.
Watching TV also helped take my mind off pain. Our society may look down on couch potatoes, but TV can serve good purpose! I didn’t notice being in pain so much until commercials! Movies were longer painkillers! I now know why Mom likes these so much – one of her favorite hobbies, more so now that she’s ill. I was often too tired to concentrate on reading a book, especially something serious. Journaling also helped get out my frustrations. At this time, I also started getting into inspirational quotes more. I tried to remember all that I was thankful for. Anything to remind me that better days lay ahead.
The reason I sought out Empowering Caregivers was due to my need to care for my mother now. I won’t go into full detail, as I’ve already written a lot and most of you are probably more familiar with these diseases.
My husband and I sold our condo and bought land with hopes of building in the near future. We moved in with my mother and if I wasn’t here to call 911, I think I would have lost her last year when she suffered a gall bladder attack and was so sick she couldn’t get up to make it to the phone. The vomiting threw her diabetes for a loop and by the time the squad got her to the hospital, the doctor said her heart was starved for oxygen. Since her gall bladder surgery, she has had a surgery to remove a huge lymphoma (fatty tumor) from the back of her neck, a surgery to replace disks and fuse vertebrae in her lower back and an additional surgery to replace disks and fuse vertebrae in her neck. After her lower back surgery, she couldn’t get around well enough to come home and had to go to a nursing home for rehabilitation. It was sad to see her there and I was thankful to have her home for Christmas. She is still in a great deal of pain with recovery and I’ve been taking her to the pool to do light exercises to help with recovery. We still don’t know if she’ll fully recover. Other health problems of Mom’s include high blood pressure, migraines, fibromyalgia, arthritis and now possibly autonomic neuropathy.
I am doing my best to caregive out of love, not merely doing a duty. At times, when I’m really tired from my job and trying to do too much at home, this is difficult. My husband is having a difficult time adjusting as well and sometimes I feel like I’m in a balancing act. This situation is new to me and I know that it is just a matter of figuring out how to go about it and also learn new life lessons. As with life in general, it is a continuous learning process, one that I don’t expect to solve overnight – or a lifetime! I’m making progress, though and am already seeing a difference in my mother and husband in just the past couple of weeks. I still have my bad days, though, and if you ask me then (or read my posts!) I may have a different answer! I’m only human!
My grandmother, Gwendolyn, has also been such a terrific help with Mom. She came to stay with us last fall, when the worst of Mom’s surgeries took place. She’s so adorable and such a delight to have around. I’m learning so much about her and am grateful to have the time together. She recently became ill with intestinal blockage and congestive heart failure as well and for a while my aunt and I took turns caring for her. She’s getting better, though.
What’s especially hilarious is to see my mom struggling with issues with her mom! Not that they fight or anything like that, but they just frustrate each other sometimes when they have different ideas on how to get something done. However, there are lots of laughs involved. Mom interrupted Grandma one time, so I grinned and said to Mom, “Don’t interrupt your mother when she’s speaking! You should respect your elders!” Then I turned to Grandma and said,” Daughters! Sometimes they just won’t listen!” And yes, they tease me just as bad! Laughter is such a wonderful medicine!
Other happenings in my life the past six months include my husband being in the hospital for pancreatitis. He had extreme stomach pain but no nausea and we had to call the squad. The inflammation in his pancreas spread to his lungs, which were filling with fluid. He was even in intensive care for several days. I was quite frightened, and did the best I could to care for him. He’s up and well now, but it was odd seeing him ill when it’s always been him taking care of me. I love him so much.
I’ve also lost my grandfather (Mom’s father), grandmother (Dad’s “step-mom”) and my good friend Deb this last year. I love and miss my grandparents, but Deb especially was a great influence as she gave so much of herself to so many charities. Losing her has also convinced me all the more to live life to the fullest. She used to talk about how she and her husband were going to do so much when they retired. How life would be so much better then. She passed away last Easter at age 48 and never got to enjoy her retirement. I consider her my angel.
I guess this is where I end my story, for now. Even though things have been quite hectic lately and there’s issues that need discussed, I still feel so much more at peace. My husband, family and I will work out our differences as we always do. I also see now what a great job my parents did, despite everything. Considering their own upbringings (the examples they had to go by), they did the best they could. They didn’t have life easy when they were little and were abused. They gave me so much more than they had – and I’m not just talking toys. I’m happy for my Dad and Patti and miss them – they live a good distance away. They have been a good source of support the past several years, too. I’m praying for Mom to get better and for her pain to at least subside to a more bearable level. I’d like for us to be able to do more together.
My thanks again to Gail. God Bless.
Dedra Woner
A few more from Leaves of Gold (1996):
“When we serve, we rule; when we give, we have; when we surrender ourselves we are victors.” John Henry Newman
“Live for something. Do good and leave behind you a monument of virtue that the storm of time can never destroy. Write your name in kindness, love and mercy on the hearts of thousands you come into contact with year by year; you will never be forgotten. No, your name, your deeds will be as legible on the hearts you leave behind as the stars on the brow of evening. Good deeds will shine as the stars of heaven.” Chalmers
“It is only with gratitude that life becomes rich.” Dietrich Bonhoffer
“Those who bring sunshine to the lives of others cannot keep it from themselves.” James M. Barrie
“I still find each day too short for all the thoughts I want to think, all the walks I want to take, all the books I want to read, and all the friends I want to see. The longer I live, the more my mind dwells upon the beauty and wonder of the world.” John Burroughs
“Love is an act of endless forgiveness, a tender look which becomes a habit.” Peter Ustinov
“As in nature, as in art, so in grace; it is rough treatment that gives souls, as well as stones, their lustre. The more the diamond is cut the brighter it sparkles; and in what seems hard dealing, there God has no end in view but to perfect His people.” Guthrie
“The tests of life are to make, not break us. Trouble may demolish a man’s business but build up his character. The blow at the outward man may be the greatest blessing to the inner man. If God, then, puts or permits anything hard in our lives, be sure that the real peril, the real trouble, is that we shall lose if we flinch or rebel.” M.D. Babcock
