Living with Hashimotos, Autoimmune Disease, Lymphedema and Allergies And Much More
Continued from: The Day My Life Changed.
After that fateful day on the beach, life was never the same. I can't count how many times I was hospitalized, never mind in the Emergency Room. It got to the point where my doctor's office would send me to the ER because they couldn't help me.
But, there's still always something to laugh about. See my funny story below:
I've been accused of being "crazy", told it's "all in my head" and was accused of being a drug seeker. Had they checked my file, they would have seen that I always refused pain medication. I wanted a cure. But the doctors were baffled.
List of Symptoms and Issues:
Numbness and swelling on left side of face
Pain under arms, swollen lymph nodes
Urinate at night 5 times or more
Constipation, then diarrhea
Weakness, especially in legs
Short term memory problems
Hard to swallow at times
Itching, especially on back
Pain on left side of neck
Pain in upper and lower left side of stomach
Lymphedema left leg (more severe) also in right leg
Dry eyes per the eye doctor
Always cold, can’t take cold weather
Repeating myself without realizing it
Autoimmune issues – allergies/asthma (it got to the point where I could barely eat anything)
Was in Kidney failure (hospitalize over a week)
Recently had issues with Atrial Fibrillation and Pericardial effusion (I'm wearing a heart monitor as I type this and have had stress tests, blood work, CAT scans, x-rays, and many other tests during my recent hospitalization in October)
I see more "gists" than one can count. Endocrinologist, hematologist, gynecologists, cardiologist, etc. etc. I have a long list of doctors in my phone and an even longer list of medications. For someone who hated popping pills, I'm currently swallowing a ton of them
I found solace by joining Facebook groups. I've learned from people and they learned from me. There were many questions I asked my doctors from suggestion made by strangers (now friends).
I've been through about ten allergists/immunologists, five gastroenterologists, and a host of ER physicians and specialists. I've also been through several pharmacies (they need to order me medications from manufacturers that are sure there's nothing I'm allergic to in each medication)
Funny Story: I was trying to get pregnant for the first time. It had been over a year and nothing. I spoke to my gynecologist who gave me the name of something to help determine ovulation. I forgot the name and was too busy working during the week to call and ask again during the doctor's office hours. One weekend, I called the pharmacy and asked to speak to the pharmacist. After a long hold, a man who sounded to be in his 40's, answered.
Twenty-three year old Me; "Hi, I'm trying to get pregnant and I need your help."
Pharmacist; "Where would you like to meet me, lady."
We both had a good laugh and I never lived that one down. Well, he did help, I had my son.
Finally, I found a great allergist/immunologist. She's a Russian doctor. I mention that only because of the accent. Some of my doctors, especially the Indian doctors, are difficult to understand. She does have an accent, but she is easy to understand.
My current cardiologist, which I found when the hospital called the team into the ER, is Indian, I think. In either case, his accent is not so thick that I have no idea what he's saying. I had to leave two doctors because I simply could not understand.
I found the Allergist/Immunologist through, of all people, my accountant. I asked if he had any candles in his office or had recently used bleach, sprays, chemicals. All would cause an allergy/asthma attack.
I'm by no means cured. Not even close. But at least I can eat a bit more than before because of this allergist's treatments It doesn't help with chemicals.
There were several holidays where I couldn't eat a thing and couldn't even eat my own food except for very, very limited items. For someone who loves to cook, not being able to cook (smells bothered me too) or eat, truly hindered my quality of life. Food is the heart of all we do.
I was terrified to step out of my house. I wound up spending 8 hours in the ER after being at my sister's house. The man who delivered the food to the Christmas party she was throwing lit a sterno when my back was turned. My sister requested they not light them, but, he automatically did. Suddenly, I couldn't breathe, severe allergy/asthma attack. I didn't even know what happened! One minute I was chatting with some ladies, the next I was gasping for air. That's how fast it happens.
The nurses at my job called an ambulance so often, recognizing the problem. I was so sick constantly, that I wound up having to resign. The last time I left work in an ambulance resulted in a hospitalization for over a week. I was still at home with a port, administering IV antibiotics to myself, when I ran out of FMLA. There was absolutely no way I could go back to work. I wasn't physically able, and not one of my many doctors would have signed off on it.
It was COSTING me money. I had to resign or I would have owed the company a fortune. As it was, I already owed over $200 for benefits, etc. Getting sick is very costly.
I couldn't go into restaurants or other public places, and once, I was in the ER for an allergy attack (my dad poured liquid drain unclogger into the sink) and as I was getting better, when a hospital employee sprayed bleach in the area right next to me. Only a flimsy curtain divided us. I wound up getting worse again. I wasn't even safe in the ER!
You can imagine the anxiety every time I left the house. I always carry two EpiPens wherever I go.
In one day, in one instant, your life could change. Never take what you have for granted. I still always count my blessings, I have much to be thankful for. I have an amazing family, friends since my middle school days that have become family, food on the table, loving pets (I'm a huge dog lover) and I always remember, things could be worse for me.
I always help when and where I can. Visit my article on how you can use your passion to help others. I had good role models. My mom used to keep dog food in the back of her car and feed strays years ago. Today, you don't see as many strays. My great aunt knitted sweaters, hats and mittens for neighbors whose father lost their job when he had five kids to support. I watched my mom send food to people in their time of need. She'd spend hours in the kitchen making huge trays. We even had an adopted grandma, it was an elderly neighbor my mom saw walking with groceries and stopped to offer her a ride.
When I was living in chaos for a few months last year during my kitchen remodel, anxiety was through the roof, especially since a close family member was having surgery at the same time. But, I remembered that at least I had a kitchen of my own and soon I'd be back doing what I love - cooking. My two passions are cooking and writing - short stories. I've taken writing classes and been involved with writing groups since middle school.
So, yes, I live with these things and a lot of it isn't pleasant. But, I remember, it could be worse and I am thankful for all I do have. I lived to see another sunrise.
I always try to help those less fortunate, who often, through no fault of their own, are struggling.
Wishing everyone a very safe, healthy Merry Christmas and Happy Hanukkah and the ability to stay strong through these challenging times. Check on your loved ones and neighbors, they may need your help.
On a happy note, Santa came to town today! Who better than the chubby little fella to cheer up the crowd.