Monday, June 25, 2012

# 125 - The Biggest Bouquet in Texas

The Hill Country of Texas can often look like a vibrant painted canvas during Springtime. The coloring that carpets the ground from various wildflowers is a sight to behold. While growing up, my parents would take many road trips, these included weekend jaunts with the sole aim to see the wildflowers in full bloom.

In fact, people travel from all over the world to come to the Texas Hill Country during Bluebonnet season. The rolling hills are blanketed in these violet blue flowers dotted with white accents that have petals and a structure appearing most unusual.

One of the most loving things I can remember passing between my parents was during each Spring as they readied to leave for one of these trips. After we kids grew up and left home, my dad and mother continued taking those trips simply to go see the wildflowers. They'd pack a bag and leave the house, heading for the Brenham area in general, but without any particular destination in mind. The only thing propelling them forward was the chance to see the hills covered in flowers as far as the eye can see.

In this Hill Country, even small spots of available earth are crammed with wildflowers. You see highway overpasses skirted with wildflowers. Driving down the road, it's almost as if there is a sea of flowers spread before you, it's indescribable. There are bursts of color in nearly every conceivable place that has dirt.

In fact, the sight strikes my heart deeply because I always find it amazing that such beauty can spring forth from brown, colorless dirt. I guess we all come from humble beginnings and to the same we will one day return.

Most of all, these flowers remind me of a kind of love that carries such a sweeping depth of sweetness. Even though my mother had so many tribulations in her earthly body, my father looked upon her as his wife and a woman with more to give than a woman who could be defined by her condition. Even in her worst moments of being overwhelmed with uncontrollable pain and suffering resulting from her body being riddled and left forever marked by Polio, he believed in her strength.

Even though she had the dreaded title of "Polio Victim" from a young age, he never accused her of being a "victim" or of having "victim mentality." In fact, when she did have moments of weakness, he did not belittle her for being human. Better yet, he could've easily used this dreaded word against her during their worst moments as a couple, but he never tried to punish her further for something she had absolutely no control over. I've found that a person who is close to another enduring major health challenges is given their own opportunity to show uncanny strength and to shine in their own way. I am glad to have never heard my father accuse my mother of being a "victim." Sure, she'd sometimes cry and feel extremely frustrated during certain moments of her life and things were not always rosy, but he did not try to capitalize upon her weaknesses. If anything, his downfall would be that he could not see her weaknesses clearly enough and she liked it that way.

I thank my father for never making my mother feel as if she were a victim...not of her own weakness as a human and not of the failings of her body. It takes a big man indeed to let his woman have weak moments without taking advantage of the same for his own ego.

It's wonderful that we, as a family, celebrated her triumphant nature. She was a fighter. And the wildflowers remind me that instead of doing things for her with a mindset of pity or with a hidden heart of feeling nothing more than charity, he did things with her out of true love, mutual enjoyment, and out of seeing her as his partner with a smile.

Together, they savored the wildflowers. He may have not have sent many flowers to her in their lifetime from a florist in a glass vase, but every year he never missed a chance to personally escort her to the biggest, boldest bouquet in Texas. There will be no one else in his life with whom he can share the wildflowers like he did with the wife of his youth and of his increasing years. He's tried, but he's found it to be disappointing because the wildflowers just aren't as pretty or as enjoyable without her by his side. No one else has the child-like excitement about those flowers as she had so willingly and openly expressed. To me, it makes me happy to know that it is a tradition that he still can't find as complete without my mother and that is an authentic expression of his heart.

I'm so happy to know that every year my mother was able to fill her mind and spirit with a beauty that only nature can provide. And now, her strength is my strength. Her determination is my determination. Her willingness to sacrifice, even when others were blinded and could not be gracious about it, she continued to sacrifice...that is my legacy.

It's a good one, and I am fulfilled. For the flowers and for so much more...I am grateful.

Monday, June 4, 2012

# 124 - A Birthday Addisonian Crash

First of all, let's make it clear to my readers and to others who might possibly miscontrue this blog as being anything other than the relaying of my personal experiences with Addison's most of you well know, the purpose of my writing is to share with others who might also be tangled in a life with Addison's. I share the good and the bad; I share unspoken truths that most of us Addisonians have already experienced, but my words are certainly not meant to be used as medical advice or treatment recommendations. This blog expresses my experiences with this disease and you can read all about it, but always remember to consult your doctor for personal medical advice.

Going for longer and longer spurts of time in between being forced to experience some level of Addison's troubles is a wonderful goal for me to attain. Since my body is full of other issues and has great difficulty fighting off infection, I seem to become aware of any illness, whether it be bacterial or viral, with signs of Addison's symptoms before the illness itself sets in to make the sickness known.

I haven't written about my last Addison's crisis, until now, because the circumstances that surrounded it had been extremely disconcerting. My 44th birthday was on May16th. I had a wonderful day planned. My best-friend was taking me out to lunch to a nearby tea-room, then my youngest daughter and I were supposed to go see a movie later that afternoon.

That morning, I woke up feeling so-so. I'd been experiencing added joint pain, overwhelming fatigue and abdominal pains over the past few weeks, but since I have had so many medical problems, I've learned to keep going, in spite of problems. I'd also been going to the doctor and nothing additional had been discovered, not as of that date. So, I kept going, as best as I could...besides, if I stopped for every ache and pain, I'd never have a life left to live. But, the general idea here is that I was up and about while happy about getting to enjoy lunch with my life-long friend.

The day began wonderfully. Kelly and I left the house around 11am for the tea-room, located about two miles from my house. Upon arrival to the tea-room, Kelly parked her suburban and we walked up to the front doors of the tea-room that was tucked in the middle of other shops, in the historic part of town, off Main Street. Little did I know, the tea-room had closed. I felt terrible for the owners of the restaurant, but we got a giggle after I had read the sign on the door wrong. I thought it had read, "Closed for an event," but it actually started out, "Closed forever."

One hour from now, my condition will be unstable, in crisis.

We stopped to take a picture of our lunch plans gone awry, then decided to go to a hot spot around the corner that prepares a unique chef's menu every day. Neither of us had been there before, so we were glad to try out something new.

After we ate our meal and the server was bringing out dessert, I began to feel a wave, a HUGE WAVE of weakness. My hearing began to fade, my vision started to narrow into a tunneled viewpoint, my stomach began to cramp with a vicious grip upon me, and I could barely sit in my seat. The white tablecloth at our table became my focus. Kelly was talking, but I was no longer hearing anything. I remember looking up to find the bathroom. Since I'd never been in this restaurant before, I had no idea where the bathroom was located. Meanwhile, I've become so adept at masking my condition that Kelly had no idea that I was going into crisis mode. I don't want to make a scene or let anyone know. This is my personality at work...if I can handle it myself, I's terribly embarrassing to me to call attention to myself during a medical problem. I just wanted to "get through it." Besides, I have been hospitalized a few times for a crisis and I've unfortunately discovered that being in the hands of medical staff, without a family member around who is well versed in protocol needed for Addison's is often MORE dangerous for my health. My friend knows of my disease, but she doesn't know I have an injection in my purse, and she doesn't know how to administer it. I do wear a Medic Alert bracelet, but like I said, it's not something that I go around announcing to each person I dine with and it's not something that is understood by the general medical population, so it's a dilemma.

This is part of a huge problem for every person with Addison's disease...the rarity of the disease makes it more difficult to get proper treatment, as needed.

I realized, as I scanned the restaurant for the restroom, that I was not going to be able to make it to the bathroom because wherever I ended up would be where I'd end up for the rest of the afternoon. I didn't relish the unpleasant thought of landing on the floor of a public bathroom. By this time, severe stomach cramping was underway with the pain becoming almost unbearable.

Looking back down at the table, I see the black book used to accept payment at restaurants and felt like bolting. Kelly looks at me and asks, "Are you okay?" She looked a tad alarmed, so I think my growing discomfort and struggle was becoming evident to her. I responded, "Not so much, my body does this every now and then...I can't believe it's happening right now, of all times."

This is NOT how I wanted to treat my friend who was taking me out for my birthday luncheon!

She said, "Well, I've already paid the bill, so let's go."

At this time, I was SHOCKED that the waitress had managed to bring the bill, get payment and bring the receipt back...all while I was "out of it" to the extent that I'd not been able to register the actions because of my deteriorating condition.

Kelly hurriedly left her seat and we headed out the door, straight for her vehicle while I felt wobbly, but acutely aware of my condition and didn't want to scare my friend. She was nearly running at this point to get to her suburban. I think she opened my door for me...I'm fuzzy on this part. I kept praying, silently, to not have a full crisis in front of my friend. It would have been horribly upsetting to her and the position she would have been forced into would not have been pleasant.

I told her, "I just need to get home and lie down horizontal; I can tell my blood pressure is plummeting, but my medicine should kick in and I'll pull out of it."

Kelly glanced at me sideways with an unconvinced expression. We rushed to my house, located nearby. Meanwhile, I had my tea glass with me, as always when I'm in a vehicle, and I took a handful of Hydrocortisone, equaling at least 65mg.

Once we arrived at my house, I gave her a quick hug and rushed out of the vehicle and toward my front door, still praying that I wouldn't fall in front of her. I felt as if I might pass out at any time, but didn't want her to worry since she was leaving straight from lunch to head for Houston's Medical Center to handle her own health maintenance. She didn't need to worry about me on top of her own concerns.

I managed to make it into the house and to my bed. Lying down, I put a pillow over my head and figured I would pull out of it, as long as I gave my body the rest it needed. But, I faded out of consciousness while wondering how this Addison's Crisis could've snuck up on me so rapidly and without the normal red flags I'm accustomed to getting prior to a crisis? I had set my cell phone my the nightstand, then I must have essentially passed out.

Vaguely, I recall my youngest being by my side, sitting on the bed next to me and leaning across me to ask if I was okay. I told her I just wasn't feeling well. I was not able to talk very well. She was very concerned and contacted her daddy (my husband) to see if she should call EMS. I think her own alarm bells were going off, loudly. Poor thing, she was scared. However, she's personally witnessed my life being put in further jeopardy by the entire EMS situation, especially after my body is put through more agony with prodding and testing and delays for "triage" as my life-saving treatment is withheld and I spiral downward faster than I would have, if I were treated at home.

Stefie gave me another hand-full of HC and I managed to swallow them all in one gulp, without lifting my head off the pillow. I couldn't even hold my eyes open.

I apologized to her for ruining our trip to the movies, but she wasn't worried about such things, she was simply wanting to stay close by to make sure I was breathing and to keep giving her daddy updates as he was stuck downtown at work without anyone available to relieve his position.

I think she realized that EMS, for ME, at this point, would have been more upsetting. She knows enough about Addison's and my own successes with treating a crisis to know dosaging changes that are needed to pull me out of this state of trouble; she had already asked me how much of a stress dose had I already taken, in addition to my regular morning dose and she knew right where to get my HC bottle to dish out more additional meds. She also knew where to find my injection, but she's terrified of the prospect of giving me an injection, as most family and friends would be during such a situation.

With humor, I reassured my daughter, "Believe me, I no more want to receive an injection from you than you want to give it!"

It took SIX HOURS for me to recover enough to hold my head up or to reach out my arm. I'd become so weak during this "attack" that I could not even reach back to the night-stand to retrieve my cell phone. I could not force my eyelids to open for an extended period of time. It was as severe of an Addison's Crisis as I've ever suffered.

Later, I discover that my body is battling a dangerous bacterial infection. I believe the Addison's Crisis was again the first warning that something in my body was going very wrong. However, I still can't believe that it came on so suddenly and so harshly.

Looking back, I can see many opportunities where I could've made different decisions. But, part of being in a crisis is that you begin to lose the ability to think clearly. However, that being said, my personal preference is to NOT be hauled into the E.R. at every sign of trouble because I've had such bad experiences while hospitalized. I've even had one physician purposefully withhold my life-saving medications because he'd never had a patient with Addison's. Needless to say, the hospital soon fired him from being one of my medical overseers. However, a person with Addison's disease does not have the luxury of always surviving such ignorance. At times, I can't help but feel that my chances are better taken in the safety and comfort of my own home, with proactive intervention, rather than going through potential additional physical and emotional stress that might make my condition more precarious, unless extremely rapid medical response is put into motion.

Again, looking back, I can see that my window of time to self-inject the Solu-Cortef had been narrow. Hind-sight is always 20/20, but at the moment of living through the worst situation I could imagine, feeling myself fading faster than I dared imagine, in public, and once I got home, I soon didn't have the strength to hold my head up...there would have been no way possible for me to handle the vial, the syringe and to have the strength to self-inject. My body became a ragdoll.

Fortunately, the right things I did were to administer an oral stress dose, right away and to get into a lying position so I didn't hit the floor and lay unconscious for someone to find me. For the past couple of weeks since this crisis, I had been extremely distressed over that possibility...of my daughter finding me unconscious on the floor with her home alone. In that situation, she'd certainly call 911. But, with me protesting, as her mother, it's another story. She believes me when I say to her, "Just leave me alone for a while to rest and I'll pull out of it."

I truly felt as if I needed to be left alone for my body to be given quiet time for the stress dose to work its way into my body.

For those of your who have not experienced a rapid onset Addisonian Crisis, know that it can happen. If it does, your situation will likely be imperfect as well. Even if you do everything in the best order and according to "textbook" standards, you might still find yourself in trouble. If you begin to feel odd, immediately take an oral stress dose, at the least. I'm glad I was wearing a Medic-Alert bracelet so that could've provided some level of communication on my behalf, if I'd not been able to help myself.

In our family, even though we've seen just about every angle of Addison's disease, it can still be very intimidating and terrifying during an attack. In my situation, my health is often so precarious that I fight back by orally taking stress dosing as soon as I feel in danger. Very often, I just need to lie down for a while, then I am able to pull out of it. However, I will admit, this day was a close call. Now I know what the problem might have been...a lurking infection preparing to rear its ugly head, but my Addison's disease beat it to the punch.

Trusting your instincts is difficult to do, but after you have followed your own protocol to ensure your survival to the best of your ability, even if that includes calling 911 and being hauled off in an ambulance, you must find it within yourself to be at peace with how you handled the situation.

Fortunately, the Lord decided that I was not to die on my 44th birthday, but it was probably a close call. I did go to the doctor after this crisis. I've had this disease long enough to know that the crisis was a sign that something more was going on in my body, and I was right.

Hopefully, I'll continue to have chances to pull out of such a severe Addison's crisis and if the day comes when I am at the mercy of those around me due to being unconscious or if I am unable to boss others around about my treatment, then I hope that the ordeal won't be too traumatizing on the person making arrangements for my help or by injecting me. After all, I don't think I'd complain too loudly, if I'm still alive to complain!

For now, my doctor increased my daily dose for Hydrocortisone so that it will more than adequately cover my daily dose and to include a stress dose. Battling this infection will create a need to daily take a stress dose, so my prescription had to be altered to reflect this ongoing battle. It's always great to have a doctor with whom you can talk about these concerns and hurdles and to know that the doctor will be intelligent enough to provide the help you need.

I'm still here --- just a tad over 44 years of age and I'm still kicking!

Thank you God for more time to walk around in this imperfect body!

Friday, June 1, 2012

# 123 - Serving and Struggling

In the midst of trying to keep up with my health, as much as possible, I took on a task that I thought might be approachable. First of all, before I had heard back from the Social Security Administration on my disability hearing decision, I had been summoned to appear before court as a potential Grand Jury member.

Never did I imagine that I would be selected. I could not check the "disability" box at that date because a formal decision had not been made and this was a court summons I am dealing with. I figured I would show up, go through the selection process, then go home.

Since I am struggling with my health on a day to day basis, I wake up and never can tell if the day will find me feeling strong or in a bad place. All I can do with the level of deterioration I have experienced is to go at the pace my body sets for me and try to do the right things to give myself as many good days, per week, as I can grab.

Oh, I am good at putting on a smile and appearing as healthy as possible to outsiders. But, I cannot hold up to prolonged activities. Those who are around me regularly know more about my limitations and are prepared for a sudden crash. Others...I make my exit before it happens. Well, at least I do my best to make an exit so I am not embarrassed terribly by my body not cooperating.

As luck would have it, the judge selected me to serve on the Grand Jury panel. I sat there and tried to breath normally. Two days per week. That doesn't seem like much, but the issue with MY body is that I can never rely upon my body to operate correctly. I might have two good days per week, but those days might not fall upon the days that I'm needed for service. I felt a bit panicked.

I sit there among the others being selected and I keep telling myself that I will simply cater my life around serving on the Grand Jury so that I can make it through those two days per week, as best as I can. The big problem is that service is for three months. But, a good part of this difficult situation was that my husband works in the same building I would be serving as a Grand Juror...this means I could ride to court with him and go home with him as the driver. Being on the road is very challenging for me because of my reconstructed cervical spine. I don't like having this difficulty, but it's part of my life and part of the considerations I must make when needing to travel.

After the selection process and after hearing my name called for service, I kept telling myself that I could do it. Positive talk began to flow through my head. I could do this! Yes, I am indeed disabled, but I am ALLOWED to earn poverty level income and to do minimal work --- once a formal decision had been made --- so I knew I would still be okay with serving, even with a disability label attached to me. Many disabled persons find the energy and time to volunteer or to serve the community in whatever capacity their body allows. The problem is...the capacity is not reliable enough to earn a paying position that would require consistency and good health to keep up.

However, as I sat in the jury box with my name on the list as those who would serve for this Grand Jury term, I held my breath as I heard the judge select me as Grand Jury Foreman.


How could I lead a Grand Jury for three months when I could not even guarantee that I could lift my head off the pillow each morning? Everyone sitting in the jury box with me began to look my direction. I gave a smile of appreciation and remembered that my position allowed for absences.

To date, I've served two months on the Grand Jury. After my service had begun, I finally got my letter of disability in the mail and my attorney said there was no problem with me serving on a Grand Jury, that many disabled persons serve because they are one of the few, along with the retired, who have the time to dedicate two days per week for this kind of service. Although, my attorney also expressed concern at my physical ability to keep up with this service.

I knew, all along, that this service would take a hard toll on my body. I knew it would eat into my "good days" left for myself and for my family during the rest of the week. I knew this position would expose me to mass populations in the city and to germs that I have great difficulty battling with my suppressed immune system. But, once I was selected to be Foreman, I felt tremendously compelled to fulfill the duty while knowing that I would never again be able to do so. In the future, I would have my disability ruling to provide so that I can avoid putting myself in this situation.

Yes, it's been very challenging for me on a physical level. There are many nights I am not able to sleep but three hours before having to go in for a hard day of service. We hear approximately 80 cases per day, which include many sexual assaults of a child, brutal murders, investigations and everything else you can imagine. Since I live in the Greater Houston area, we see it all. Some of it makes my stomach turn. Having Addison's does not add to my situation of being in extremely stressful situations two days per week. Anyone who knows of serving on a Grand Jury knows it goes above and beyond serving on a regular's for an extended commitment and includes heavy case-load and a broad scope of felonies. We do not hear misdemeanor stuff, we hear the disturbing part of criminal nature.

I have no problem admitting that I am a strong, yet diplomatic leader. If I am going to be Foreman, I am there and we have order in our proceedings. However, it's not a popularity contest. I must be firm, guiding, ensuring that respect remains among all jury members and keep us on track.

However, I have had to miss twice. On average, many jurors seem to miss about two times. Others never miss one date of service. If I am feeling very weak and there doesn't seem to be enough Hydrocortisone to get me up and going on a functional level, then I don't try to put myself in an early grave. I call in and miss my whopping $28.00 for the day. The month of May also gave us a holiday which fell on one day of service, so that gave me an additional break.

During the last few weeks, I've had doctor appointment after doctor appointment. As usual, I am battling constant viruses and bacterial infections. I have even had a double biopsy of the uterus. Other doctors have ran invasive, painful tests to reveal one of my cultures being positive for Klebsiella Pneumoniae, which is a type of bacteria you do not want to battle.

The toll that serving has caused is fully apparent to me when I look at my house. The two days that I'm gone for Grand Jury, trying my best to keep up and paying a price that impacts me for, at least, the following day of being down and out, I can see that my house is neglected. That two days per week of extra rest allows me to somewhat keep up with the house on a level that keeps it clean and tidy. Serving on the Grand Jury has created a dip into my reserves that are taking a huge toll on my homelife and my daily health. I just don't have it in me to do this week after week, without a break to "recover" and to allow my body to rest while battling other issues. It's been a hard pill for me to swallow, a confirmation that I am more weak than I had even imagined. This past year, my increased resting state had allowed me to more fully enjoy moments with my family or moments on our acreage. But, this service that has now been going on for two months has shown me that I have little left to give. I must reserve my energy and prepare my body to be able to efficiently endure next week's two days of great stress and strain.

I have June left. Then, it's over. My husband has been very concerned and thinks I should bow out gracefully. However, I feel as if I've come this far and can keep trying until the very end. It's difficult on me, but here I am, in this situation and I want the Grand Jury to finish their commitment. Since other members of the jury have high absenteeism, I cannot add mine to the mix. They have twelve people and need nine for a vote, they prefer to have ten present for a vote to neutralize a rogue radical that might be on board. So, there's a lot of pressure to make it to service every Monday and Thursday.

Since I now have a very dangerous bacteria to battle, it's become more precarious for me to continue doing more than I am really capable of doing. I'm in a bad position. My body hurts, is weakened from the immune system being attacked by this bacteria and the medications have their own side-effects. I want to give my body every possible angle to do a good battle, so I am having to be in a resting state during my days at home, much more often. It is frustrating to me. I feel completely drained.

And it doesn't help the Addison's situation to go to the courthouse to see pictures and to have a jail house inmate testifying in front of you about his baby's head being smashed in like a pumpkin that hit the concrete, over and over. After all, he only wanted to play his video games in peace!

Hearing of families being sexually assaulted, together, by a crazed intruder can wreak havoc upon your emotions. I keep it cool while serving as Foreman, but I have my days when I come home and cry and wonder about the direction of humanity. Being on a Grand Jury is very trying. One of the men just told me that he leaves every session with an extremely heavy heart. He is in his 60's and has told me that no other life event has impacted him as hard as serving on this Grand Jury. Yes, it includes horrific moments.

Then, there are the moments when we all laugh about certain cases, such as the robbery team that broke into a sex shop, took off their masks to be caught on video and then one of the robbers actually tried to return stolen goods the next day because it was disappointing. Yes, those moments give you pause to laugh so hard that your side hurts.

Anyway, I continue forward. Not knowing whether or not I'll be able to keep up until the end and if I can't, I will be humiliated by my body's inability to do what I want and need it to do. I feel compelled to serve my city in the capacity for which I was selected. I have citizens who have been accused and citizens who have been terribly victimized that are counting on our Grand Jury to help them have their day in court so that justice can be administered. I don't want to hinder the process.

For those of you who pray out there...I could use your prayers. I want to beat this bacteria that has a 50-50%  survival rate because of it being so difficult to beat. So far, for over ten years, I have continued to beat the odds, and I want to keep doing so.

For now, I'll probably have a high level of frustration with my non-cooperating body. I cannot keep showing our house to potential buyers during this increased weakness of my abilities. Things feel strained and difficult, yet I continue to move forward as best I can and having the love of my husband is the best salve I can have during these problems. He is loving and supportive; knowing I am stubborn, he respects my decisions, but knows I am struggling every day and feeling very sick.

I don't like feeling sick so many days per week. I think some of my Grand Jury members see it in me. I'm a business woman, so I can handle the proceedings, even under difficult conditions, but there are a couple who look as if they've had a few battles of their own so they are wearing eyes of understanding that seem to drill into the core of me.

Rushing time by is not a way to live, wanting time to quickly pass is not a way to live, but I can't deny that I will be celebrating the end of June. My service will be at an official end and I will be free to obey my body in a more respectful, healthy way so it can be stronger for its continued, ongoing battles. Meanwhile, I am finding my needed strength in prayer and extra down-time. I pray that my service makes a difference to someone out there...