Interestingly, I have participated in several studies and for various academic papers and one question recently posed was for me to share advice I'd give to a newly diagnosed Addison's patient. First of all, whenever I say "Addison's," please know that the term, for me, includes all persons with adrenal insufficiency.
The answer to that question is wide and varied. However, after dealing with Addison's disease that was officially diagnosed by a huge medical team, while hospitalized during a crisis in 2001, I've dealt with many lessons this odd disease will bring into your life.
Lately though, I've discovered that this disease has caused me to go into complete Ovarian failure. It must have begun last year, at 42 years of age. To be quite descriptive, I have been without a period for over nine months, but the last few that I did have were quite different from the endometriosis nightmare monthlies I'd suffered with during my "good" ovary days.
My last gynecologist had told me, about two years ago, that he believed I was going into ovarian failure. He stated that I was too young to be in menopause and my estrogen levels, etc., showed I was not pre-menopausal, but Addison's disease has a different plan for these glands. We must remember that ovaries are glands. Apparently, my body has decided to do away with these as well.
This past week, my new gyn was fairly nervous about broaching this subject, until I assured him that I've been through the medical ringer and he did not need to treat me with kid-gloves. Unlike other women I know with Addison's who are very young, in their 20's, and experiencing devastation at their ovarian failure, I am 43 and have had the blessing to give birth to two daughters when I was very young.
As my gyn put it, "The eggs are forever gone, no more left to do business with in the uterus."
For me, I'd already mourned the loss of my childbearing years in the last five years. I guess most women do this at the realization that those beautiful days are gone. Those beautiful, frantic, exhausting, rewarding, frustrating days are in the past. My days with raising kids has been fulfilled.
Yes, to be honest, I loved making children with my husband! I can't imagine any other parents being as joyful as we had been to produce offspring. We were giddy in love and crazy about our babies before they were even born. My husband would put his face against my belly every evening and talk to the baby...he wanted to make SURE they recognized his voice upon their birth. He never failed to make sure he told the forming babe that he loved them and couldn't wait to meet them in person.
Myself, I'd read books to my growing abdomen and dreamed of the day I'd read those same books with the child in my arms. It happened. My dreams came true.
So, I've been blessed. To be told at 43 years of age that my ovaries are kaput is not anything but more dreary news about my body sputtering with problems due to health issues. My dentist friend joked with me this past week about it (we've known each other for 20 years), he said, "Better it be a gland to fail than an organ."
Yes, that is true. And better it be a gland or two that I've already put to work so beautifully. I must say, my ovaries and my genes combined with my husband's did produce two remarkable beauties. So, I feel blessed in spite of being told that a hysterectomy might be in order.
The next step to follow all the urine samplings and extensive tubes of blood for every test imaginable to a gyn...I am scheduled for a mammogram, as a precaution since my mother died at 57 from breast cancer, and to get the "magic wand" ultrasound. For those of you who don't know what that is, well, it's an internal ultrasound for women...use the imagination...a wand that is inserted to get an up close view of the uterus, firsthand.
The first time I showed up for one of these ultrasounds, I thought I was to have a normal, abdominal ultrasound and was literally horrified by the contraption that the technician pulled out and waved about as if it were a sword. I felt tricked. I felt as if I were about to experience a technological violation! However, she quickly discovered by my fallen open jaw and shocked expression that I had never even imagined such a test existed. She stopped everything and explained the ultrasound thoroughly before going further.
Obviously, I have lived under a lot of "protection" from these kinds of things. To each their own. For me, it was disturbing.
Now, I must have another tryst with the magic wand so that we can see what is happening with the uterus and the fibroids that have long been present, yet stable. I'm not relishing the idea of another surgery. I'd been hoping to get by without ever needing another since I've had a minimum of seven surgeries already, each a major surgery. We all know that Addison's disease brings great risks with surgery. The doctor already mentioned the risks several times during our appointment, but he already thinks it is probably necessary.
I wondered, if the ovaries are failing, is it necessary to remove them because they might do further harm by remaining inside the body? I know nothing about any of this stuff. If anyone knows, I'd love to get your experienced or friend-shared knowledge.
For now, I sit here with my withering ovaries and wonder what else is withering? Pretty soon, I'll be completely vacant inside! So much will be removed from my body that I'll be hollowed out. Well, it seems like it.
I guess I had always wanted to be the Bionic Woman when I was a young girl. I'm half-way there. I have all of the loss and removals, but none of the military bionic parts that would make me super-human. I guess I should be fair and mention the titaniam parts I have throughout my body. Oh well, I guess I will be content to be myself, even if that means there is less of me to end with than had been with me to start.
Life is like that sometimes.
For those women who are newly diagnosed, I'd give advice to you to see a specialized OB-GYN right away, if you feel like going and expect to have children. Do not delay. I've personally known too many women with Addison's who have experienced ovarian failure because of this disease. For some, it happens sooner than for others. If it is possible, you could have your eggs harvested and stored for future decisions about children, at least the stored eggs would allow a decision to be made with less stress pressing down upon you. With the ovaries failing, you often still have the uterus and the ability to carry a child. So, think it over and spread the word.
When I was first diagnosed, I was told that ovarian failure was a possibility, but no one discussed the options. No one pressed upon me the decisions that I could make to enable us to have more children down the line. Since I was only 33 years of age at the time of diagnosis, this might have been imperative to us, had we wanted more children. To be fair, I had been critically ill for an extended period of time and it would probably have been impossible for me to carry a child to term. I still do not feel that any physician ever took the time to fully explain the ramifications of this disease upon other glands, bones, etc., because none of them really seemed to understand it themselves. The hint of information passed along seemed to come from what little textbook notes were available at the time...not much and often outdated with faded information that no longer proved valuable.
So, we must pass this critical information along on our own, by personal experience with having this disease, especially to the younger women who are finding themselves officially diagnosed with this condition. They need to be able to make every decision possible for themselves concerning their body's potential for more problems down the road. Explanations in the most simple form is best --- straight to the matter and without holding back. Treating the issue lightly will not make the problem less daunting. It would be best to lay potential problems on the table and let the woman with Addison's make her own decisions that will impact the remainder of her life. To NOT be told is the worst scenario. Knowledge can cause anguish, but knowledge definitely holds power.
These days, I am delighted to have grown daughters who will probably discover what it means to have their own children and their own set of challenges in this regard, pretty soon. The thought delights me in more ways than one. I am also delighted with my little niece Shaye because she is more like a grandchild to me than a niece. Since my mother passed away, I dote upon her as if she were a grand-daughter. My sister has been exceedingly beautiful in character by making sure that her daughter and me are well connected. Such a good heart is exposed by this depth of sharing.
Of course, my sister knows I'm up for babysitting whenever she and her husband want a date night, but if I happen to be busy doing something else, she doesn't seek to persecute me for having a life of my own either...so generous of her! Most of all, my sister is wise enough to know that her daughter will benefit from having other family members, older family members, in her circle of love. Denying a child that benefit is a form of cruelty and ugly selfishness. My children were always exposed to the elders in the family, on both my side and my husband's side. This is how they learn that being older doesn't mean you aren't fun and this helped them to respect the elderly for their position in life.
|This past week, me and my niece, Shaye.|
Anyway, I wanted to pass on the latest in the Addison's disease saga, yet not leave you with worry or sadness. My life is full and rich. The Lord blessed me young. My young daughters still have a great deal of growing up to do, but my position these days is to kind of stand back and let them do the rest of it pretty much on their own. My "mothering" is not really needed any longer. My ovaries retired long ago in the truest sense and the cords have been cut. If my daughters ever need motherly advice, I'm here. If I'm not able to answer the phone the first time around, it surely doesn't mean I'm not here, it just means I couldn't get to the phone that time! My ovaries may be out of commission, but the best part of my mothering is still here...ME!
Bottom line is...they have a mom who is available. Since I no longer have a mom to answer the phone on the other line, I understand fully what the absence of a mother truly means. If my girls need a friend, I'm also here, but at times it might be good for their actual "friends" to fulfill this role. That said, I am thrilled that my youngest daughter and I hit that mutual respect of friendship very quickly...I respect what she tells me and she is respectful and a true friend with what I tell her. I can tell that she is a mature little thing, at only 21 years of age, unlike so many other young people her age that spew anything they know during a fit because it seems to suit their mood in ugliness. It's sad that it's so difficult for young people to find a true friend; too many are so self-involved that they are incapable of being a loyal friend to anyone, yet they expect everyone else to be loyal to them. One day, maybe they'll learn that friendship is a two-way street. I'm thankful Stefie is a wise friend at such a young age. I'm thankful that my sister is such a meaningful best-friend, then I have so many others as well who are dear friends. I am not lacking. But, it is certainly a wonder to behold as you realize that you gave birth to one of your best-friends! Yes, my ovaries have been good to me.
I cannot hold back my great happiness with my youngest child and there is no reason why I shouldn't make it known to everyone...she is a treasure in my life because she makes missing my mother less painful...my friendship with her is highly valued. I'd literally trust Stefie with making decisions about my life. If only all mothers could feel that way about their children. Again, I am blessed!
Talking with her comforts me. I'll always remember her for being here for me during these past few months of great upheaval during my disability filing, during the administrative hearing sadness and through ongoing compounded medical issues in addition to other areas of big change in our lives. She knows better than anyone how I am impacted. Her compassion and selflessness is a salve for the soul. Is it no wonder that I am eager to return her friendship?
Ovaries, you failed me with perfect timing. I cannot complain. Addison's disease could not rob me this time around for I am already blessed indeed!