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!


  1. I'm so sorry you had this experience, especially on your birthday! Thank you so much for sharing. Your detailed description of what an Addison crisis is like is so helpful for us newbies who still have so many questions.


  2. Thank you Lana for sharing, sorry you had to go through this. I too appreciate your detailed description. Happy belated birthday!


  3. Alicia, I had not been able to write about it because it had been so scary and it didn't seem right to happen on a birthday! haha! But, now I know why it hit me; trying to battle the infection. We must keep fighting back in positive ways to make our lives as full and as healthy as they can be, even with a chronic condition that impacts our immunity. In spite of it all, I had a wonderful birthday, surrounded by love.

    Bridgette - I appreciate your thank you note in the comment for my detailed description...I force myself to write the details because I feel they might be critical to someone else. Brushing lightly over these things won't help others, so I am glad to put each struggle into digestible form. (I hope) But, I must admit, it took me a LONG time to be able to vocalize or to put down these things in such a way because I remained in denial for too long. I cannot express how much I fought against my diagnosis, but I did. Being free with myself in acceptance allows me to reach out to others. I hope you or someone else will benefit from the ridiculous amount of time it took for me to come to terms with having an irreversible condition that would not be going away...I hope more and more people with Addison's will blog and be candid about their experiences. My heart feels lighter because of all the people who are now trying to write about living with this disease, in their own way, it is incredible.

    Thank you for reading and for letting me know you're out there!!


  4. Those details are SO helpful. Thank you for sharing. I had a crisis last year and it was pretty much the same as yours, although I was not quite as foggy. I think I had another crisis recently and, like you, I 'lost time.' So far I've been lucky on the ER front (although they still need to be faster with stress doses) and treating it myself.

    My only problem is my blood work is now normal, but I suspect my system is slowly starting to fail. Too many insults with steroids to treat asthma for it to come back fully. I only qualify for steroids now b/c I'm still in that one year period of risk after having been insufficient. (I don't take daily, just stress dose...for pretty much everything except lying down.)


  5. Bless your heart.....I hope your doing ok I'm emailing you!

  6. Lana, Horrible story....I'm glad you made it home safe and that your daughter was home to keep an eye on you. When I feel myself headed for a crisis I do the same things....try to deny it is happening....swallow a bunch of pills...and lay down. I have given myself a shot a few times, and so has hubby and a girlfriend. Usually the decision to go to the ER is made by one of my guys because I never want to go. I hope whatever bug you are fighting goes away quickly and doesn't cause any more problems. Drat that dreaded Addison's!

    p.s. I've been taking florinef, even though I am secondary, and actually feeling better, but it elevated for blood pressure. If it ain't one thing, it's another huh?



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