The older I get the more I realize that mental health issues may actually go hand-in-hand with physical health issues because they will make you feel crazy So why do I say that and how can I prove that?
Well because I’m living proof of how the healthcare system keeps running you around in circles for not just days or weeks but for months and years until it literally makes you go crazy! I only thought I was tired in my forties, now well into my fifties there are days I contemplate is it really even worth the time and effort to get out of bed. Then once I do decide that “my zoo” of 19 animals plus their friends still depend on me to feed, water and give them a shelter every day, I begrudgingly accept my responsibility and get up moaning and groaning as my knees pop and legs stiffen as I walk like Frankenstein to the coffee pot (my true best friend) and pray that God will somehow help me through one more day Now, should anyone feel this bad only in their fifties? Heck no! I used to play sports, was fit even out of high school and after having both my children. However, as time ticked on, hormones changed and MY health was put on the back burner as I started taking care of everything ana everyone besides me, well MY health went downhill and downhill quickly.
Sadly, I had been trying to be more preventative knowing that I had a family history of diabetes, cancer, scoliosis, high blood pressure and even mental illness. But even with all that I still feel like doctors missed a lot of my symptoms because as a woman (especially a mother) you just run yourself ragged you think it’s just normal fatigue when it’s really an avalanche fixing to happen.
So a few years back I found the doctor I finally needed to answer some of the crazy fatigue going on in my body and even mind. After chasing this doctor from Muskogee to Tulsa he finally had some answers for me and had me on compounds that were actually making me feel better and a C-pap machine that kept me breathing better in my sleep. But that fairytale romance ended when he went on to just wound care and unfortunately I haven’t been diagnosed yet with diabetes just pre-diabetes (because he believed in preventative measures to keep my numbers in check) and I had no wounds so I was referred to another doctor and another doctor and …well you get the picture. Here lies the first problem with our flawed healthcare system – you don’t get to pick who is right for you, your insurance who knows absolutely nothing about you gets to pick it for you.
So now over ten years down the road and eight doctors later I’m now diabetic have tested positive for at least one autoimmune disease and still haven’t gotten into a specialist after being referred for over a year. Yes, believe it or not I have had a referral to get in with a rheumatologist for over a year now. Though this is not my general doctor’s fault because there seems to be a shortage of specialty doctors and nurses, I am still the one who suffers day in and day out waiting for answers that may never come.
So while you wait and go around and around like a merrygo- round trying to get any answers, you begin to study symptoms and self-diagnose yourself because nobody else seems to know your body better than you do – doctor or no doctor.
You definitely know when you’re feeling good and when something feels terribly off.
So after several different doctors and diagnoses, I still having to go in time after time and ask for specific bloodwork to be done because I’ve felt so lousy for the past three years and no one wants to address the elephant in the room- and it isn’t my weight, people – it’s the autoimmune that has been charted for the past three years but no one knows what to do to fix it. So every three months, here I am pouring out my concerns to my doctors over and over again as my body betrays me with aches and pains a 90-year-old should have not a 56-year-old as I patiently wait to see a specialist who will hopefully give me some answers not just more pills and a handicap sign for my rearview mirror.
Meanwhile, as tendons in my legs tighten so severely that they tear and I can’t walk, I again find myself in crazy scenarios where I show up for three days in a row just trying to get my bloodwork done. When I have to call and speak with one doctor’s nurse while sitting in the office with my other nurse so they can figure out how many tubes of blood they need to take out of my hand (Because the veins in my arms are shot and collapse due to the diabetes or the autoimmune you knows) and they finally figure out what tests they needed to do.
Meanwhile I swear I have been very patient even though I’ve wanted to pull out my own hair during the whole process because for three days now I’ve forfeited my coffee and I’m not a happy camper because I desperately need it to keep working and doing my job. But finally I am scheduled to see a rheumatologist in Febbills ruary, after getting a call from their office back in March of 2024.
To understand my current situation a bit better, for over three years now I’ve tested positive for Sjogren’s syndrome which I had never heard of either. So Sjogren’s syndrome, pronounced “SHOWgrins”, is an autoimmune disorder where your own immune system mistakenly attacks your body’s own cells and tissues.
Scientists aren’t certain why some people develop Sjogren’s syndrome but certain genes put people at higher risk of the disorder. Because it appears that a triggering mechanism — such as infection with a particular virus or strain of bacteria (hmm like COVID-19) — is also necessary to have Sjogren’s, its two most common symptoms — dry eyes and a dry mouth I had suffered from for years (first red flag). The condition also often accompanies other immune system disorders, such as rheumatoid arthritis which my maternal grandmother had and lupus.
In Sjogren’s syndrome, the mucous membranes and moisture- secreting glands of your eyes and mouth are usually affected first — resulting in decreased tears and saliva (which I struggled over six years ago just trying to do saliva test that took me hours to collect when it should have taken me minutes-second red flag) In fact almost five years ago my eyes got so dry it felt like I had poured sand in them and they were burning and itchy so badly I couldn’t even drive myself to the eye doctor. So a friend finally drove me to the third eye doctor I had seen through all this craziness. My eyes had gotten so light sensitive that some days I would have to pull over while driving because I couldn’t see. So now knowing the two main symptoms of Sjogren’s syndrome are:
• Dry eyes and Vision problems that lead to light sensitivity, blurred vision and corneal damage.
• Dry mouth. You might feel like your mouth is full of cotton, making it difficult to swallow or speak.
This helps explain why I kept drinking water like a fish and why I had to wear sunglasses every time I walked outside. Light would literally blind me and stop me in my tracks.
As I read more on the auto immune disease I found that some people with Sjogren’s syndrome also have one or more of the following:
• Joint pain, swelling and stiffness (check)
• Swollen salivary glands — particularly the set located behind your jaw and in front of your ears (check)
• Skin rashes, patches or dry skin (check)
• Persistent dry cough (check)
• Prolonged fatigue (check) All of these symptoms I had been struggling with for several years now and some symptoms to the highest degrees -every single one of them.
So why is my immune system mistakenly attacking my body’s own cells and tissues?
Doctors really don’t know why and neither do I, I definitely link it back to vitamin and mineral deficiencies but it also does so much damage to other parts of your body too, such as:
• Thyroid
• Kidneys
• Liver
• Lungs
• Skin
• Nerves
• Rheumatic disease. It’s common for people who have Sjogren’s syndrome to also have a rheumatic disease — such as rheumatoid arthritis or lupus, (check)
• Lungs, kidneys or liver. Inflammation can cause pneumonia, bronchitis or other problems in your lungs; lead to problems with kidney function; and cause hepatitis or cirrhosis in your liver.(check)
• Lymph nodes. A small percentage of people with Sjogren’s syndrome develop cancer of the lymph nodes (lymphoma).
• Nerves. You might develop numbness, tingling and burning in your hands and feet (peripheral neuropathy), (check) Now I am also seeing an orthopedist because the tendons in my legs and knees joints are so tight I can barely walk which is driving me nuts. Just another attack on my body’s own tissues but I’m not giving up yet. In fact, this just makes me want to dig deeper and find more answers for not just myself, but for my daughter who also battles autoimmune disorders. There’s got to be more studies done and more doctors looking into the beginning stages of all these diseases. Because in the end being chronically sick for half your life will definitely make you feel like you’re going crazy and of course it will mess with your head mentally. However, I still believe there are answers out there and I believe in a hope that is bigger than my ailments. So as I raise my tea cup filled with Kombucha, ginger, honey and lemon and say, “Here’s to another year along with our health and our pursuit of happiness where questions are answered and money grows on trees to pay for it all.”