You may have noticed my withdrawal from social media, my blog, and in my real life. Grab a cup of something and snuggle into your favorite chair and let’s catch up…
My husband traveled for a business trip. His return flight took him through multiple international airports for 24 hours. Ten days later, a virus ripped through my home that would alter my world for over a year. We had the very highly contagious virus plus 5 other secondary infections at once. All were antibiotic resistant.
Still recovering from the virus and other infections when I also came down with Influenza .
March 2020-April 2021
I experienced an exhaustion so severe that I was not able to complete mundane tasks. Everything took hours to complete instead of minutes. I was left in a constant state of exhaustion that just wouldn’t end. Daily naps were just a thing that I had to take to function for the rest of the day. The exhaustion was severe enough that emptying and refilling my dishwasher took over an hour. I gained a LOT of weight during this time. I was also experiencing heart palpitations and lung function restrictions.
February 1, 2021
I began making appointments with my cardiologist, pulmonologist, GI, GYN, and Endometriosis Surgical GYN to make sure there was no residual effects from the illnesses and extreme exhaustion.
February 2021-May 2021
I spent at least 3-4 days a week getting some form of blood work, tests preformed, or with my specialists getting the results of everything and deciding on the next course of action.
April 1, 2021 & April 29, 2021
I received my first and second COVID vaccines. Within a week of the first vax, my smell and taste returned. They were lost January 2020. The exhaustion that had plagued me for so long was G.O.N.E. Daily naps were no longer needed or taken.
ALL test results and blood panels came back better than expected. My heart and lungs were actually in fantastic shape for all they had been through. I had double pneumonia and bronchitis twice in 6 months (June 2019 and January 2020.
All previous restrictions were lifted for the first time in 11 years! I was told to take it slowly as to not injure myself but enjoy my life and get the weight off as quickly and safely as possible.
I started taking walks, using my Max Trainer, and implementing other things into a daily workout routine. I was listening to my specialists advice of taking things slowly and building from there.
July 2, 2021
I made my yearly physical appointment with my PCP. I also made an appointment with a dermatologist for my cheeks (Thinking Rosacea?) and weird “freckle like” spots on various parts of my body. My skin is CRAZY dry too.
July 7, 2021
As I unloaded a cart of groceries into my truck, I felt stabbing needle like pricks all over my body. When I unloaded my truck in my driveway, the stabbing pains returned and I broke out in hives all over my body.
July 8, 2021-July 22, 2021
The exhaustion has returned. Daily naps for several hours are mandatory! Every time I am outside, in front of windows, or under certain lights in my home, I break out in hives. My “freckles” are spreading to other areas of my body. I am down 25 pounds! Foggy brained. Hard to speak sometimes. I know what I am trying to say but getting it out is harder than it should be. Joints hurt. Body aches. Headaches constantly. Blurry vision all the time to varying degrees. Little ulcers in my mouth. My GI tract is on overdrive!
July 22, 2021
PCP appointment. I ask to be tested for any and all autoimmune diseases she can, routine yearly blood work, and vitamins/mineral panels as well. She tells me keep my dermatologist appointment at all costs and to take the results of my blood work with me.
July 23, 2021
Get all blood work done
July 24, 2021
Blood work is back. As I am looking over it…I am already seeing things that are NOT what you want to see. Waiting to see how long until my doctor’s office calls me and tells me to get in to see her immediately.
Me: HOLY SHIT! WHAT THE EVER LOVING FUCK!
July 28, 2021
Dermatologist appointment. Almost every dermatologist in the practice and 2 HOURS later…
Me: ARE YOU FUCKING KIDDING ME? You can’t be serious!
Them: Yes, we are completely serious! This is very rare and probably permanent. Get into an endocrinologist immediately.
Also Them: Calling in several prescriptions to your pharmacy. Here is a daily routine you need to do several times a day.
July 28, 2021
Immediately go home from the dermatologist’s appointment and research endocrinologist and start up the evaluation process to see if I qualify for an appointment.
July 28, 2021-August 1, 2021
Brain processing everything. Hours spent on Google researching diagnoses and coming up with literally 1 or 2 sites that reference each other. Left with MANY unanswered questions.
August 2, 2021
Called allergist to make appointment because medication was changed and things were added. Called dermatologist to make a Q&A appointment. Hubby was authorized to come to this appointment to get his questions answered and to understand my diagnosis better.
PCP’s PA called to set up results appointment.
August 3, 2021
Allergist and dermatologist appointments. Some answers given. Some unknown. Left feeling less clueless.
Endocrinologist’s “scheduler” contacted me. Appointment needed sooner vs when she has an opening in December. Appointment scheduled.
August 6, 2021
Endometriosis GYN surgical consult and confirmation of GYN’s diagnosis appointment. GYN’s original diagnosis was confirmed and a secondary diagnosis was given. I need surgery but realistically it can’t and won’t happen for a least a yr. I was placed on meds to attempt to help me with the symptoms.
Her: You do NOTHING half assed do you?
Me: I like to overachieve whenever possible.
August 9, 2021
PCP results appointment. Talk to me about the other appointments you have had in the last 2 weeks. I have not gotten their notes yet.
PCP: (Mouth Wide) OH. My. GOD. You went BOOM.
1 hour later: Meds called into the pharmacy. Routine and medications have been segregated into morning, mid morning, and evening times. PA called in to show me how to do self medication and practices done. Then “show me” you know how to do it all on your own now.
PCP: Understand this is not the end of the medications. The endocrinologist will be adding new medications to and adjusting current meds doses.
August 10, 2021-August 19, 2021
Naps still required. Body shuts down when I attempt to ignore the exhaustion. GI tract is really not thrilled with me. Adjusting to meds and diagnoses.
August 20, 2021
Endocrinologist appointment today. Confirmed diagnoses and increased 2 medications. Can’t rule anything out for now. I have a follow up in 2 months. May need to see a rheumatologist. They hope that the medications will begin to regulate. Concerned at how quickly everything developed.
A rare sun allergy/autoimmune disease that is triggered by exposing the skin to sunlight (UVA, UVB, direct and indirect sun exposure, and certain types of lightbulbs (including surgical, day light bulbs, etc.). The allergy causes the release of histamine from cells in the skin called mast cells. I break out in hives, welts, “freckles”, and burn when exposed within minutes. It can take up to a day or two before my body returns to “normal”. However, the freckles are remaining. I am now more susceptible to skin cancers. There is no cure and scientists have no idea what actually causes it. There are VERY few studies and very limited research on it. Several times a day, I have to apply broad spectrum sun blocks and avoid sitting near windows. I have to wear thick weaved dark clothing that covers my entire body. Nothing like wearing long sleeve sweatshirts, hoodies, sweat pants in 100+ degree weather!
Type II Diabetes
My A1C was shockingly high and my blood glucose levels were well over 350 every time they were checked. I am on several medications right now to lower it slowly but also quickly.
They are not even concerned about this at the time. It is on their radar but…Hahahaha!
Stage 3 Non-Alcoholic Fatty Liver Disease
They are not even concerned about this at the time. It is on their radar but like the cholesterol…Hahahaha!
Endometriosis is caused when endometrial-type tissue grow outside of the uterus. These tissues attach the uterus to various organs.
Adenomyosis is a uterine condition (often referred to as the ‘evil sister’ of endometriosis) that occurs when the endometrial cells from the inner lining of the uterus migrate from that lining into the muscle wall of the uterus (the myometrium). The uterus walls can thicken and the uterus can grow larger than it should. The growth can breach nearby organs like your ovaries, fallopian tubes, and bladder.
This diagnosis has confused my specialists as my thyroid panels have all come back perfect but the markers for Hashimoto’s have definitely not.
Depending on the time of day and which dermatologist, it goes from being Rosacea to HMMMM…We are going to treat you for Rosacea and see if we can get it to calm down. Add some of the creams to your nose as well.
Inflammation Blood Markers
These markers were crazy high. I am on multiple antihistamines daily to try and help bring this down to normal-ish levels.
Although my blood markers came back normal-ish, there is enough there and I have enough symptoms that Lupus can not be officially ruled out yet. While it’s not common, you can have both Hashimoto’s Disease and Lupus.
Adjusting To My New Normal
It will take several months for my body to adjust to all the new medications, then we get to start to adjust the doses as blood work results dictate.
I am listening to my body. If I need to not move that day, then I rest. If I have extra energy then I use to clean or meal prep quick and easy meals for me to reheat. I am now eating completely different then the rest of my family.
1. My skin won’t be sun damaged when I am older
2. I get a whole new wardrobe of UPF 50+ (IF the Solar Urticaria is not temporary)
3. New nicknames (Sweet Summer Vampire is my favorite so far!)
4. Medically tinted windows means you can’t see me dancing and singing in my truck (IF the Solar Urticaria is not temporary)
5. Weight loss
6. Cleaner diet
7. Amazing hat collection
8. Black, black, and more black!
9. Dreary Rainy Days mean less layers.
10. I am now the perfect excuse for not going the outdoor gatherings you were trying to figure out how to get out of.
11. I am getting to know my specialists and pharmacists REALLY well!
12. Not feeling guilty about ignoring the front door when strangers knock.
13. Window clings offer way more privacy at night.
14. A reason to use/wear parasols, umbrellas, and driving gloves.
15. No idea but I find another one soon!