This is the interview that was done with Patricia Smith, she tells her story in essay form. She shares her journey living with Systemic Mastocytosis, Dysautonomia, Dystonia, Eosinophilic, Eosinophilic Esophagitis, Type 2 Diabetes, Degenerative disk disease, scoliosis, and depression. Please be respectful of her and her story told in her own words.
Degenerative Disk Disease http://www.spine-health.com/conditions/degenerative-disc-disease/what-degenerative-disc-disease
My dad is from East Tennessee, my mom from Germany. Being a military brat, I’m not really sure where I’m “from” but have lived the majority of my adult life in middle Tennessee. I am 54 and I have systemic mastocytosis as well as dysautonomia, dystonia, eosinophilic esophagitis, type 2 diabetes, degenerative disk disease, scoliosis and probably a few things I have forgotten! I also suffer from clinical depression.
My story is a bit different from many. When I was a child, I was always the one that had to sit down and rest because I was bright red and out of breath. My parents just attributed it to me playing too hard, even though none of my siblings, cousins or friends ever had to take a time out. When I was 12, I wrote in my diary that something was wrong with me and nobody would believe me. I was getting dizzy and passing out (which was a combination of the masto and dysautonomia I know now).
When I was 16, I had my first anaphylaxis. I was working at a theme park and took something I shouldn’t have. My parents did take me to the doctor then, one of which was a cardiologist who said my problems were all because I loved my father more than my mother. I am a daddy’s girl, but I love them equally, and this was a cardiologist not a psychiatrist!
Anyways, they found nothing wrong with me and pretty much believed I was just faking it to get attention. Fast forward three years later, I was working at Vanderbilt University in the clinical pharmacology department. I was a secretary for the head of the department, typing up reports and journal articles.
One day, I had typed up a paper on masto, and told a co-worker that I had all of the symptoms. She urged me to tell the doctor, but after years of being told I was crazy there was no way I was going to mention this to my boss! When I was out sick, she told him and he had me admitted to the Clinical Research Center that day. I spent many weeks after that in the hospital over the next year.
Very little was known about masto then (1981) and I was largely a Guinea pig. My first treatment was 16 aspirin, 8 clorphenirimine and 4 Tagamet a day. Epipens were not prominent then so I had a vial and syringes, which are not very practical. Shortly thereafter, I got married and a year later, had my first child. This is where things veer off strangely. During my childbearing years (1983-1998) I had very little symptoms. I would still shock occasionally and had occasion other issues, but masto was really in the back corner of my mind.
I had a hysterectomy in 1998 and everything came back much worse than it had been. At first it didn’t even dawn on me that it was the masto. Late one night, after a particularly rough time, I googled mastocytosis and put two and two together. Since then, masto has been my daily companion. While it was technically after my diagnosis, my life during those “good” years was pretty normal. I had two children, raised them alone most of the time, very active both with them and my personal life, ran an extremely successful business. I guess life was pretty “normal”.
Now, every day is a challenge. Some days are better than others. I go very much by the “spoon theory” in that you get so much energy each day and you have to decide how to spend it because once it’s gone, it’s gone. Right now, I am not working but hoping to go back to work soon. With me, I am one of the ones that can eat most anything. Some days that works out fine, other days it nearly kills me. And I never know which one it’s going to be. I also for about the past five years, have had totally unexplained anaphylaxis. That being that I can just be sitting in a room perfectly fine and go into anaphylaxis. My biggest triggers are probably smells and pain. If I stub my toe, I can expect anaphylaxis. I hate the out of the blue attacks.
My most recent one was less than two weeks ago. I was sitting in the living room and suddenly started vomiting and big D. I have no idea what caused it but thought I would die right then and there. I have been staying at my sons since then until I can get a medical alert system set up. Right now, a day in my life consists of television and Internet. I am hoping to get back to work, would love to get back into social situations but perfumes and lotions make that very difficult so I tend to isolate myself much more than is healthy.
I tell others living with this that I have been doing this for 35 years diagnosed, 54 years total, and we can support each other and we can get through this together.
The thing that I wish others understood is that I am not my disease. I was seeing a guy for a very short while recently, until he saw me shock. And it wasn’t even a bad one, but he was outta there shortly after. Said he couldn’t handle it. I wish people understood that making plans is hard for me because I feel fine one moment and horrible the next. I wish they understood that just because I look fine does not mean that I am.
I think I have learned to be a more compassionate person. I have learned that life is fleeting and there are no guarantees so you just have to do what you can do, when you can do it, and accept that you have limitations (that has been the hardest to accept). I’ve learned that I am not alone in this illness and have met some of the most amazing friends through it. And although this disease sucks and will probably one day kill me, I would not trade the friends that I have made for anything.
Thank you for sharing your story with me. You are a brace woman and I admire your strength. Thank you for sharing your story with me.
Hopeful for you always.