Thursday, March 29, 2012

# 116 - More Glandular Failure

As a woman with Addison's disease, one of the heightened areas of concern has been for my doctors to keep an eye on other glands in my body, watching for multi-glandular failure.

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 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.
March 2012
Speaking of ovaries, it had been thought that my sister would never be able to have children of her own, so her ability to give birth to her child, Shaye, has been a massive blessing. Shaye is her one and only biological child, yet she is blessed to also have a step-son. My sister is a wonderful mother and one of my best-friends. We work hard to enrich each other's life and never to do anything to destruct it. That is the most wonderful kind of love anyone can experience.

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 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!

I'm sure my niece will be a great friend to her own mother, once she is in her
20's and I hope to also include her in my tight circle of true friends one day.
For now, she gets full attention as the five year old who has unending questions,
and I am glad to provide unending answers to keep her on her toes!
Speaking of deep friendships, I had discussed these woman-issues with my daughter Stefie over the past few months. It's odd, yet she had already suggested to me that I was in ovarian failure before the doctor confirmed it. She's very involved in her own life with working to finish her degree and has her own issues to confront, yet she still cares about her mom enough to delve a little into the issue and pay attention to the "Addison's disease" complications. So, the diagnosis was not a surprise to her, yet she's always saddened to discover a new way that this disease is trying to take me down.

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!

Saturday, March 3, 2012

# 114 - Heartache for Victims of Mother Nature

I have been spending part of my morning looking over the pictures. the widespread devastation and I've been reading heart-wrenching stories about the loss of life from the five state weather system of destructive tornadoes to hit again yesterday.

This has been a week of profound loss for so many people. A week of unimaginable terror and horror as survivors muddle their way through their own loss while trying to be supportive to their neighbors.

Since we've lived through the devastation of Mother Nature ourselves, we know about the horrible heartache that comes with a landscape that is wrecked and lives that are forever lost; it can be the worst scene imaginable.

I have a heart and soul that aches for everyone touched by these tragic events that are difficult to understand. I pray that all of our combined heartaches will indeed help the victims bear the burdens of loss. I hope that our tears for those who are suffering will somehow let others know that we are thinking of them and praying for them, even if we aren't close by.

Regardless, you don't have to live through such an event to understand loss. We Americans pull together in such times; it is our way of life. I am eager to take some of our household belongings to any local church that will be making donations to the victims of these tragic circumstances.

May God's all-knowing love be tangible for us in this very imperfect world as we endure the hardships of this life. May those who were taken by the destructive winds be embraced in the peace of Heaven and free from all material things that the rest of us are left to sift through and put back together as best as we can.

And know that all of you who are closest to the tragedy...I pray that God strengthens you so that you may make a difference to those who are suffering, no matter how big or small the hand that reaches out, may it be blessed ten-fold for its compassion.


Thursday, March 1, 2012

# 113 - Up and Down and Up and Down

The thing about Addison's disease that irks me to no end happens to be the ups and downs that come with this disease. Of course, those ups and downs have a good side and a bad side to it.

For some, there are more downs than ups. There are people with Addison's disease who have been severely impacted, even with brain damage from the lack of oxygen that takes place during an Addisonian Crisis as blood pressure plummets. If this happens during the night, there can be little prior warning to an oncoming crisis.

Unfortunately, I've been in the position to have an Addisonian moment during the night or in the wee morning hours and that time-frame can add even more challenging difficulties in getting the right help in fast order. Keep your medicine bedside is the lesson I learned off the bat with this disease.

Most of us know that there are many people who lose their life to this condition, so it is imperative that we people with a "brittle" condition, which means we are more subjected to difficulties managing the disease due to other uncontrollable circumstances or conditions, we who struggle with this disease must stay extra vigilent in doing our best to ward off an impending crisis.

For me, it was difficult to realize that I needed to up my medication for ANY kind of stressor...did I know that physical exertion would be necessary in my foreseeable future? If yes, then up that medication. Did I know that a big emotional event is on the horizon, such as a child's graduation, getting a call that your teenager has been in a car accident, having a loved one require your care during their own illness, or was I facing the imminent death of a loved? Yes? Up those meds. There are so many areas that can tax your body---don't be unprepared to up the meds.

Of course, life has a habit of throwing curve balls, so there won't always be a ready-answer for upcoming hardships and stresses, just be prepared to take extra meds as fast as possible. It should be the first thing you do...before freaking out about a car accident, before you start mourning, before the shock sets in and before you decide do something unusual, such as paint a room in your house. Be aware. The little and big things in life should prompt your attention to first go to your medicine bottle and then continue on with life's ups and downs.

A couple of months ago, I had to drive my youngest daughter and I back to the southside of Houston, all the way from the Dallas area...a five-hour drive. To make matters worse, we were traveling with THREE dogs, one of which was extremely car-sick and vomiting frequently, in spite of every kind of remedy. Topping it off, we had to make the trip late at night and it began raining on us as we were driving down the black-top slick two-lane highway in-the-boonies of Texas, without street lighting. The danger of a deer or stray animal running out in front of our truck remained in our minds in this country-setting. Then, we hit horrible road construction that had less than ample signage. Soon after beginning our trip, I began to experience "adrenaline dumps" on a regular basis; it soon became clear that my condition would make this drive a horrendous experience.

To combat this constant adrenaline rush upon my body, which Addison's disease prevents us from being able to confront without medication, I was required to do something I'd not experienced on this level ---- in over ten years of living with this disease --- for the five hour drive, I was forced to take a couple of lump boosts of my Hydrocortisone up front, then keep taking 5mg of Hydrocortisone approximately every 15-20 minutes for the entire trip to ward off the clear signs that I was going into a danger zone because of the constant stress while driving.

For two hours straight, there wasn't even a safe zone to stop at, not with us two gals. We decided that I could pull off the road and get into real trouble with my Addison's, in the middle of nowhere and without a hospital in sight, or keep going and keep trying to feed the disease with increased meds. My injection was out and ready to use.

It took a long while to get to a safe point on the far outskirts of Houston. Even then, we knew we couldn't pull over to sleep in a hotel for the night because of the three dogs. A strange hotel would certainly mean barking dogs. We debated the possibility, but it would not be easy to sneak a Collie/Boxer mix, a Black-Tri colored Australian Shepherd and a Yorkie into a hotel room. Even more unthinkable would be to try to keep all three quiet for the duration. It was another recipe for misery.

So, we plugged along and kept heading for Houston.

However, I learned that even though I have great driving abilities, I discovered that the stresses of driving under difficult conditions for a prolonged period of time is definitely a time of trouble that requires increasing my medications significantly. I have always driven all over the problem. But, I had to admit that times are different since I developed this disease. You can't avoid some conditions on the road, such as a sudden rain-storm or construction that is ever-changing.

I can guarantee that I won't be ready to drive at night any longer. I won't be taking long distance trips with a dog that is a vomit bag and makes me worry about whether or not she will survive the trip due to severe dehydration. And I won't necessarily be able to always escape rain during a long trip, but I will continue to depend on weather reports...hoping they will be more accurate than not. Anyone who knows Texas, knows this is the 50/50 rule of the weatherman, which means, "I just don't really know." Texas is subject to isolated rain showers at any moment. Period.

Plus, during any travels, I'll continue to be sure to keep large amounts of Hydrocortisone on me, in 5mg tablets because they gave me the most perfect increments to consume. I'd initially begun the extra steroid dosing when I first felt the wavy head and the vision blurring...taking 30mg, then another 15 mg, and when my symptoms began to fade, but the adrenaline dumps were clearly still taking place, I then continued to take another 5mg every 5-10 minutes to replace the synthetic amounts I was expending for each stressor.

Not knowing the roads didn't help. Once I reached those lovely far out-skirts of Houston, I began to relax and man-made lighting from Houston's city limits brightened the entire sky, as if a huge flash-light were being shone from a giant hand. All the city conveniences, especially the wide roads, not having to drive next to concrete construction barricades for miles and miles and the concrete highways instead of asphalt made the trip much less stressful.

This was a very different experience for me with Addison's disease. My youngest daughter had known how dangerous my condition had been and she kept volunteering to drive, but my condition was still a better option with driving than her inexperience on highways would've been for both of us, especially on wet roads that were under construction and doggie distractions. Experience can indeed make-up for many short-comings. If I had found myself going too far into an Addisonian crunch, I would've immediately pulled off the road and put my hands in the air. I very well came close to doing this several times. If we hadn't been so very alone on the roads, I might have considered it more easily.

Photo of a Texas highway during the day.
We were on more narrow roads, without another
soul in sight, in the dark.
To tell the truth, I didn't want to "give-in" to my condition...I wanted to keep battling and taking the meds that would force my body to behave more properly under stress. Regardless, I was amazed at how much extra HC it took before I began to feel "normal" again. It probably took an easy 80mg for the entire five hour trip, and we didn't make one stop, we drove the entire way through in our desperation to reach home.

In the end, I learned a valuable lesson about traveling...from now on, I will personally take extra meds up front, perhaps an even higher dose than I believe is necessary before the trip commences. I won't mistakenly think that traveling, just because I've done extensive travel my whole life, will be no big deal.

It's better to be safe than sorry.