For many years I’ve walked into your office and listened to you. I’ve heard many things come from your mouths that I had to go along with thinking it was the answers I needed to get well. Then when it came my time to tell you all how I felt, you just brushed me off like I was some crazy person and couldn’t possibly be feeling that way. How can you know? You don’t live in my body. All you can see is the outside and what’s going on inside my body you can never feel. You’ll never know the suffering I’ve had to endure and the many days and nights that I prayed to die, yes I was and still at times that desperate but if it hadn’t been for a far Greater Power than any of you I would not be here today.
I’ve tried telling you all for years that something was badly wrong and you just shook your head or brushed it off as being a part of aging. What about all the times I saw you when I was in my thirties and tried to tell you about the strange symptoms I was having? At the age of 39 I was either on the sofa or the bed for a whole year. I was even hospitalized three times in that one year and sent to many different specialists before one specialist uncovered my problem in some labs and it wasn’t even in his specialty to treat me. After three stays in the hospital one would think with so much blood drawn it would have been uncovered. The specialist told me I had Hypothyroidism and sent me back to some of you to be treated. What did you do? You made me even sicker by putting me on one dose of thyroid meds. after the other, not knowing what you were even doing till I was so sick I prayed to die. You never run the much needed tests on my thyroid that would have told the whole story. After many gruesome months and needless suffering, one of you finally hit the right dose and I was on the road to recovery, or so I thought.
But it didn’t stop there, it was only the beginning. All of those days and nights that I was laid up I started having bladder problems and hurting so bad I couldn’t walk with one infection after another. After you all wasted my precious time deciding what to do, one of you finally decided to take a little of his time to put me in the OR and find the answer. It was another Autoimmune Disease in my bladder and the lining was inflamed. You even put a name to it but I call it IC.
After many years of dealing with this bladder disease and walking in your office for four straight years having catheters put in my bladder for you to put medicine through, and it burning my bladder so bad that I sometimes cried after I walked out. After all of this and the treatments lasting maybe a week if I was lucky I finally found my own treatment that still keeps me going today. Yes, I had to find my own medicine and it turned out to be a simple supplement to which you turned your nose up at and told me you didn’t see how that would work.
A few more years passed with me walking into your office for regular visits and labs just to be told everything looked good when deep inside it was far from being good. Inside my body a raging storm was brewing. I finally got so sick I barley could go and I’ll never forget how you treated me as if I was crazy yet again and talked down to me like I was a child or some crazy person and one of you went far enough to call me a hypochondriac.
Finally, after you all got tired of seeing my face walk through the door you decided to dig a little deeper only to find out I had Hashimoto’s Thyroiditis and there was no hope for my thyroid gland. Finally an answer, but you all told me I would feel so much better once it was gone and like an idiot I listened to you. But here I am today still suffering more than ever before and nary a dose of thyroid meds, have I taken that’s stabilized me. I’m even more sick now than the day I had it removed.
The way of life I once knew is gone. I’ve had to change my whole lifestyle and diet, tried to heal my gut, take iron, other supplements, etc. to no avail. I’ve went from being a very get up and go person, finding pleasure in the little things like cleaning my house, shopping, working in my flowers etc. to not being able to get up and do anything but watch others do it for me and take care of me. And if that wasn’t a hard enough pill to swallow , it’s the feelings of this horrific disease beating my body into the ground more each passing day and to top all of this my Adrenal Glands have collapsed from trying to carry my body so long due to all of your negligence and uncaring. I’m now dealing with the craziest and scariest symptoms I’ve ever felt yet and there’s a new one to contend with each day. And all the thyroid medication in the world is not going to be able to help me now. You and I both know with Adrenal Fatigue, Thyroid medication can’t pull me up when the adrenals are pulling me down. And dealing with that awful fatigue that can never be explained. It’s like no other tiredness in the world and that awful feeling of aching all over and not being able to raise your arms or pick your feet up to walk due to weakness and trembling.
You’ll never know how many sleepless night I’ve went through or that dreaded feeling of going to bed each night knowing I’m going to wake up at the same time, in the wee hours of the morning because the Stress Hormone called Cortisol is to high.
You’ll never have the feeling of being so wired you can’t bat an eye or what it’s like to lay in bed and cry because you need to sleep so bad and uncontrollable depression hits you right between the eyes in those wee, lonely hours of the morning.
You’ll never know what it’s like to cry out for God to help you get just one good night’s sleep. Needless to say he and I have had many long talks in the middle of those long nights and days and if it hadn’t been for him helping me I wouldn’t even be here today.
He’s surely been there for those awful panic attacks and the anxiety that never ends. He’s listened to me so many days and nights when I tried to talk myself down and find that peace and calm that I yearned for so much.
None of you will ever know what it’s like for me to drag myself out of bed with the feeling that I could sleep a week and so tired I can’t hold my eyes open long enough to eat my breakfast, all because my Cortisol has decided to drop to Low when it’s supposed to be the other way around with a normal person’s body.
And my eyes are so sore all the time and I have a headache that would kill a bull.
Nor will you ever know what it’s like when the Cortisol spikes again during the day time and I’m so light headed I feel like I’m walking on clouds and someone has to help me to the restroom for fear of falling.
And trying my best to stay away from stress because I have zero tolerance and those crazy adrenal rushes that race through my body at the least bit of stress.
And those uncontrollable shakes that won’t go away day or night inside my body.
And that awful itching on my body that comes and goes and there’s nary a bump or a bit of redness to be found.
And having to time myself on how much TV I can watch at night or be on the computer and try to shut it off at least an hour or two before bedtime due to seeing blue lights in front of my eyes when I close them to sleep and pray hard I can.
Then I roll and tumble all night burning up and sweating on the coldest nights due to that other Hormone the adrenals put out called Aldosterone when it decides to drop to low.
And a simple thing as taking a shower is a huge chore and for someone that’s always been independent, to need help is so degrading.
But the hardest thing to accept is knowing I may lose my eyesight altogether and that fear that someday I may wake up blind.
And having to live with needing Dental Work done and knowing with Adrenal Fatigue there’s no way they’ll touch my mouth because they can’t give any numbing medicine or anesthesia.
That’s what Adrenal Fatigue does to a body. But how can I forget, you don’t even acknowledge it just like you don’t acknowledge Hashimoto’s till it’s to late. You all say things like it’s all in your head but what hurts me the most is when one of you so called know it alls, tell me I should see my Psychiatrist. None of you will never know the true meaning of how bad words can hurt when your body is so sick and it causes you to lose what little mind you have left. A Psychiatrist can’t fix the source, that’s your job.
I know the road is getting longer by the day but nary one of you will ever care because you can’t feel my feelings or go through a nightmare like this or you wouldn’t be so fast to brush people like me off and hurry to get out the door to see that next patient so you can get that dollar. I have always been just a number to you and a dollar sign. You do not live in my body, nor have you had to lay down and give up your life the way you once knew it and feel like you’re living in the twilight zone every day and night of your life. You’ll never know what it’s like to lay in the recliner or on the sofa all day with your muscles wasting away and can barely walk over the house. You’ll never know the feeling of looking out the windows and wanting to be outside and your body can’t carry you. And you’ll never understand how bad it makes your heart hurt to see the finest man and biggest blessing of my life, my husband have to do everything in the house, cook, wash dishes, run errands, do the yard and gardening work, take me to see all of you, no matter how long the wait or trip, and take care of me at the same time and never once complain. You’ve never seen him kneel down beside me and pray for me and cry with me or feel the hurt in his heart because he can’t do anything to take it all away. But I see it every day and my hearts aches for him and what he’s had to see and go through .
I miss so many things that I used to take for granted. I see my sewing machine sitting in the corner and haven’t stitched a quilt in three years. I loved my writing and the joy it brought to my heart knowing I was preserving my heritage and roots by keeping it alive. I long to do so much with my life and live it to the fullest but that’s left up to the one that knows everything about me and you for that matter. And in case you don’t know his name, it’s God and he’s our Heavenly Father and the Great Healer, not you. You think you’re so high and mighty but remember one thing, he gave you the ability to care about your patients and have compassion but somewhere along the way you’ve dropped that by the wayside or you’ve never come to know him from the start.
So, when you see me in your office in my wheelchair I ask you to take a good look at what and who I’ve become. I’m someone that looks in the mirror every day and doesn’t recognize the person looking back. I’m someone that’s lost so much weight that my skin is sagging. I’m someone that has to eat every two to three hours or I’ll pass out due to developing Hypoglycemia because my adrenals can’t put out enough energy and my sugar drops and all the symptoms that come with it.
All of this should have and could have been prevented if you’d took the time to really listen to me and let me tell you how I was feeling instead of shrugging me off. You could have easily found out if you’d done the necessary Labs that I ask you to do instead of telling me that you didn’t go by those Labs. When someone is so sick they barely can crawl and all else has failed, would it have wasted that much of your time to take it a step farther in finding the root cause or be willing to change their thyroid meds, for something that might have worked.
It shouldn’t be so hard to remember the person that walked in your office so many times, even though she had to crawl and not recognize her today. She’s still here but only by the Mercy and Grace of God. I promise, it was nothing you did and she will keep on researching and trying to help herself just like she’s always done. Maybe, one of these days God will see fit for her to find that one special supplement or miracle pill that she so longs for that will heal her and put her back on her feet. And she can honestly say it’ll be, no thanks to all of you.
I ask God every day to take this anger away from me towards all of you for my own sake as well as others so I can live what’s left of my life regardless and find some peace. And that I can accept what comes my way and try to go on living till God calls me home. I want you to know it has taken every ounce of my strength and what little efforts I have and many weeks to even write this letter. The only thing left for me to say to all of you is…..
I’m praying that every one of you with the MD at the end of your name will find some of that much needed caring, and understanding and be willing to take the time to really listen so you can have compassion for the many others that’s like me or the ones following in my footsteps. I ask you all to remember one thing, we’re all human beings put on this earth for a reason . We all have our own battles to fight. Please do not let another person walk in your office or go down this same road without trying to help them. We only ask for help, nothing more, nothing less and we will not give up.
Each day we wake and choose to carry on another 24 hours in agony, we prove ourselves. We’re all Warriors. Who knew that we would be conceived into such existence where pain and death are inevitable. We didn’t ask for this. But….there’s a plan far Greater waiting for us and a Great Destiny for each of us. We’re Strong, We’re able. Let’s keep fighting Soldiers. We will not give up.
© Susie Swanson, 2017