August 2001: About a Month Before Receiving Testing and an Official Addison's Diagnosis
The kids have just started back in school. I've been going further downhill. God...what is wrong with me? I can't even sit up for a couple of minutes without beginning to pass out. I'm watching life pass me by. Somewhere, there is a cork in my body that has been pulled and my life-force is slowly draining out, bit by bit. No one can find the pulled plug so it can be re-corked, but I sure do feel it missing. Forget driving; forget working; forget making dinner or doing the dishes or folding laundry or playing the piano or having lunch with a friend...forget everything mundane, normal and everything that is "me."
Above all, I mourn to just be a healthy mommy again. I don't miss the money from being unable to work, even though we desperately need it; I don't miss having a clean house...I miss the little things like getting up with my girls and making their lunches, driving them to school and being completely present in mind and body. I wake up with them, but my body won't let me sit, stand, walk and do "mommy" things. They look at me and do not even ask for anything because they are so scared. I can see it plainly in their little faces. I want to reassure them, but the truth is written all over my body and my sudden inabilities. What kind of guarantees can I make to them? Should I say, "Don't worry; go to school and I'll be here when you get home...Mommy will be fine." Should I lie? What if that doesn't happen? God forbid...I do not want to die a liar.
I am devastated. Besides me...Who can be a mommy to my daughters? Who else pushed them out of their body? Who nursed them at the breast so that they could grow up to be beautiful and strong? Were my antibodies worth forgoing the formula? Obviously, I am flawed. Who will read Ms. Piggly Wiggly to them? Who will listen to all their stories about all those "stupid" boys that I know are secret crushes? Who will wrap my children in their arms and provide that Mommy-Softness? I am that mommy. I am here!! Somewhere inside all of this mush that used to be a working, strong body...I am being buried alive! Yes, I am lying here, barely able to move, but I am still their mommy.
Truthfully, I am SICK and TIRED of lying here. It's been a couple of months now. I've not even driven in over two months. If I can't stay conscious, it's just not possible. I can't force myself to remain conscious; lives would definitely be in danger. So far, there have been at least two dozen trips to various doctors and no one has an answer. Where are the answers? Where is my magical test? Maybe I just need a vitamin of some sort.
The latest creative diagnosis I've received is the M.S. diagnosis. The neurologist in downtown Houston's medical center told me that I PROBABLY have M.S., but that it is perplexing because it wouldn't cause the symptoms I now experience. The MRI is clear of any lesions - the brain and spinal cord look decent. Still, he said there is no definitive test for M.S. That stinks. I don't think I have M.S., but I know it'd be an easy answer for these doctors and they'd be finally rid of me. I keep reappearing. Still desperate. Dr. Chairman of the Neurology Department stared at me and said, "Your symptoms are above and beyond those with M.S." He continues, "I won't chart you as having M.S., but I am strongly concluding this to be your problem." My mother is sitting next to me. We look at each other in confusion. So, I stare back at Dr. Neurology in disbelief and ask, "You don't want to CHART me as having M.S.? That means you are not convinced, so, I ask again, WHAT IS WRONG WITH ME?" He shakes his head, says he is sorry for the news and walks out. My mom and I now must figure out how to get me back home again. These trips are definitely NOT a walk in the park, especially since I cannot walk but a few steps any longer.
Doctor after doctor we see. My husband has no more time available to take off work because he has been forced to call in on so many days for me being so ill or in the hospital. My mother and I are together most every day. She is my ultimate hero. Many doctors say the same thing, like non-thinking puppets, I constantly hear the same conclusions, "You have chronic low blood pressure and a salt deficiency. Go home and eat more salt on your food." The doctors send me back home, and I sometimes feel as if they're rolling their eyes behind my back as I struggle to walk out of the room.
So, here, in my master bedroom, I lie and wait. The t.v. drones on and I can't focus on the words. My husband drops into bed beside me each night, exhausted. He's never had to do this much around here, but he is rising to the challenge. He's always been wonderful, but I mostly took care of the house-cleaning, my own job and the girls. He is amazing and adaptable. He and my mother know the ugly truth...things are not getting better. I am really trying to appear brave and "healthy" to those who walk into the room, but I am very afraid. I avoid mirrors because my skin looks odd and my eyes have dark rings. My thick, luxurious hair is rapidly thinning. Something is very wrong. My body feels as if it wants to die; it tries to die, but I fight back. Dear God, have mercy upon me, I don't want my husband or my children to find me lifeless. I want to live. I want to be normal again.
..............................that was a barely legible journal entry from near ten years ago, before my diagnosis. About a month later, in yet another hospitalization, I discovered that I had been miraculously surviving in a prolonged state of Addisonian Crisis. If you read my blog entries, you will start to see the reasons I suspect that I did survive. At that time, I would never have imagined that things could have gotten worse, but they did. To all those who suffer with Addison's and who experience a piece of hell before diagnosis or for those who are not as fortunate as I have been...I reach out to you with deep compassion. For those of us who try to live day by day with this disease...I shout the rally call of, "Don't Give Up!!! Do your best to get through the bad days, then SAVOR, SAVOR, SAVOR the good days!!" The doctors had no answers for far too long. I cannot even believe some of the ignorance that me and my family endured. Thanks to one brilliant doctor, I did survive. That account is for later. For now, after nearly ten years of trying to hide my disease, I set aside my pride to TELL ALL OF IT so that HOPEFULLY it will help others to KEEP LIVING TOO!!!
Hi Lana!
ReplyDeletethanks for the comments on my blog, it's so weird to not know anyone in person who has Addison's. That makes it such a blessing to connect with people online who do.
I go back and forth between wanting to read and learn about the disease to wanting to just keep going as I am. I get anxious sometimes when I read about the horrible things some of us have had to go through. Despite the bad, I'm thankful for what I've learned about faith and whats important in life. It's so crazy to hate the experience as much as I am grateful for what I have gained. ;)
Thanks for all of the information you are putting out there on Addison's. I feel like the internet doesn't have nearly enough resources about it.
Suzanna
Suzanna, I hear you girl!!! We take the bitter parts & hope to process all of it so that the end result is beautiful peace.
ReplyDeleteThere is something healing & soothing about meeting up with other people of have been touched by Addison's Disease. Since it is such a rare disease, we're not likely to meet someone in Walmart, or church, or in the neighborhood that has Addison's...by statistics, we are definitely more isolated.
It's human nature...There is always a longing to connect with others who can understand by relating directly to the physical and emotional battles that come with having Addison's Disease.
I also agree with you that it's easy to hate the experience of having Addison's, but to enjoy the good that comes out of it. It wasn't our choice to sign up for this disease, but look at all of us...we're forming our own unique tribe.
I am Lana, but I have Addison's Disease...the disease does not define me, but it is a part of my life. The struggles with Addison's makes me strong; it makes me appreciate everything more; it has taught me the meaning of a really good day and how to try to limit the "bad" moments into as short of a time as is possible - to not classify a hard time as a "bad" day. I try to keep the bad moments on a short leash. I just try to not give it that much power. It's an ongoing journey. Life is so precious...we all have so much to give. Even your pain and your suffering and your own personal trials thru this disease (or whatever else) is REAL and you can use it to reach out to others - the goal - to keep sharing and know ou are not alone - I am not alone - we dredge thru this mess and know that Addison's Disease is linking many of us with very similar stories, great resources, support sources and new information about the Disease that might be critical to all of our future. I hope we can learn from each other so our "down" days aren't so low and so we may live each day as healthy and as joyful as possible. For now, I am thankful and praying that my own sharing helps others to feel less self-conscious about their own sharing. I'm being authentic, even when it's tough...because someone else might need to hear that another person with Addison's is just as messed up, but it all balances out...with patience.