Dealing with chronic illness!

Who knew when I was diagnosed with Psoriasis when I was a child that it would lead to a life of health problems? Not my family and most certainly not me. So here I am, over 20 years later writing a post about my life and wondering if I will keep uncovering new issues connected to Psoriasis as I continue my life.

I was very young when I was diagnosed with Psoriasis; somewhere between 2 and 4 years old. The biggest things I remember about having Psoriasis were: It’s itchy, scalp treatments were painful, the smell of tea tree oil, and being reminded over and over again about how I painted my expensive ointment all over the brick wall of my grandparent’s house. Yeah, I will never live that one down. Ever.

I was frustrated because I would be teased for having a flakey scalp. (In junior high, my personal bully went around telling everyone that I had fungus. Partly because of my psoriasis and partly because after my parent’s divorced, my father didn’t force me to take a bath, so I could go a month or more without bathing—I didn’t have much of a sense of hygiene then. Though my mom usually tried to get me in the tub when I visited her if she could.)

It wasn’t until I was an adult that I actually took the time to learn about psoriasis. Up until that point, I had thought that Psoriasis was a skin issue. I was surprised to find out what it really was. Psoriasis: “A condition in which skin cells build up and form scales and itchy, dry patches.” The basic definition doesn’t actually give any information about what psoriasis really is.

First, Psoriasis isn’t contagious. Second, it is NOT a skin condition. So what IS psoriasis? Psoriasis is a life-long auto-immune disorder. It is not curable. My immune system basically attacks itself.

According to Psoriasis connect, “Normally, skin cells that form in the deepest layers of your skin make their way to the surface of your skin. They then flake off and are replaced with new skin cells. This takes about a month. However, in people with psoriasis, the immune system sends signals that make skin cells grow faster than normal. Cells move to the surface of the skin in about four days. Since they move so quickly, they don’t have time to fully mature and flake off.”

There are many types of psoriasis: Plaque psoriasis, Guttate psoriasis, Inverse psoriasism Pustular Psoriasis, Erythrodermic psoriasis, and Psoriatic Arthritis. (Learn more here)

I personally have a few of these, luckily, still fairly mild. I have plaque psoriasis (red patched covered in silvery white scales) on my feet and on my scalp, though I used to have it in my ears and on my back and every once in a while I get it on the backs of my hands. I get guttate psoriasis (small red dots) on my limbs and torso. Inverse psoriasis (smooth, red patched without scales) in similar areas to the guttate psoriasis. And I am fairly certain that I have psoriatic arthritis, though I have not yet been diagnosed.

What you do not learn right away is that it is considered an inflammatory disease. Basically the immune system’s response is to protect your body against infection and disease through inflammation. So certain parts of my immune system are over active.

Now, a reader might wonder why all this is relevant, and that has to do with the last several years of my life. I’m going to give a little back story about my “recent” health.

Spring 2007 – Abdominal pain, vomiting, fever high enough to hallucinate. I was eventually taken to urgent care who sent me to the ER. They ran blood tests and gave me a CT, but were unsure as to why I was having my symptoms. I was told that I could possibly have Chronic Appendicitis, ovarian cysts, or a third option that I cannot remember. I had noticed around this point that sometimes I didn’t feel right after eating, my stomach would feel heavy. I just attributed it to eating too much junk food.

My eating habits didn’t concern me much. I knew that certain foods made me feel sick, and I avoided them without thinking about why I couldn’t stand them.

2009-2010 I started college in Virginia. I kept ending up in the campus health office with abdominal issues. And each time they were convinced that it was a UTI. One time they ran a culture and found I had a yeast infection, no UTI, and no idea why I was in so much pain.

Wait, that really didn’t give you any information. The important date to remember was in the spring—2010. (I know it was then because I had just started talking to my ex-girlfriend again and she was pissed at how health services had treated me and wanted to go smack them, however she was in Utah and could do nothing.) I had woken up in the morning for class and had gotten an email that class was canceled that morning, I was relieved and went back to sleep. It was around lunch time when I woke up sitting straight up in bed, clutching my stomach and crying out in pain. I tried to get up and realized that I could not move.

Initially I tried to call my roommate, no answer. RA, no answer.  A girl who lived down the hall in my dorm finally answered, she was eating and wanted to know what I wanted. I couldn’t respond, I just started crying, the pain was increasing. She was suddenly very serious: “Luna, where are you?” I croaked out my response and she hung up. When she arrived she helped me put on shoes and supported me all the way to the health services office, half dragging me most of the way. I made her leave me there so that she could finish eating her lunch.

Health services ran tests, and told me “if your pain gets any worse, you will need to go to the ER.” (Keep in mind that I couldn’t move I was in so much pain, They probably should have sent me into the ER then.) I went to my Japanese class, trying to pretend that I was not in pain, and that is when my ex called me in response to my text message saying that I wasn’t feeling very well. She was not very happy.

A couple days later, it was gone and I returned to my life, fairly normally—for me anyway.

6 months later, start of sophomore year, I had a strange experience. I could not stop eating. I felt like I was starving. I ate over 4000 calories on day one, and probably over 5000 on day two. (day one: bagles with cream cheese, fruit, doughnuts, Subs, chips, cookies, soda, fried chicken, potato salad, chips, extra chicken, more potatoes, snacks… went to bed hungry. Day 2, same breakfast items, similar lunch, 2 large plates of shrimp scampi –I even drank the butter sauce—3 bananas, spaghetti-o’s, protein bars, granola bars, other food I cannot remember.) I was at my girlfriend of the time’s house. I was shaking, nauseated, could hardly move. Had an on and off fever ranging from 96*F to 104*F over a couple of minutes.

I was forced to go to the hospital. Seriously. She had a very strong male friend carry me down 3 flights of stairs and put me into a car. He then drove over 100MPH to the hospital while on the phone with dispatch so that we wouldn’t get pulled over.

It was a long wait in the ER waiting room. I ended up having severe Diarrhea a few times before they took me back to a room. (and then the nurse, worse nurse ever. Couldn’t find my vain, so she kept pumping the damn needle all over in my arm, without taking it out. I told her I was going to puke and she didn’t believe me. I told her again and was ignored. It took my GF threatening her to get her to give me a puke bag, which I immediately filled.) They found my Blood sugar to be severely low. In the 50’s. I was given an injection of sugar water into my IV. When my blood pressure was read, it was low enough that they had to keep me over night.

Again, no answers.

Over the next couple of years, my chronic abdominal pain and nausea got more prominent. Winter 2012, Getting ready for work I collapsed in the hall in pain and had uncontrollable vomiting. At first was accused of making it up to get out of going to work. I insisted on a hospital trip when it got to the point where I couldn’t breathe much. My CT scan found a growth on my ovaries, they were unsure if it was cancer or a cyst. Ultrasound showed several cysts on either ovary. (we are still unsure if they were the cause of the pain.)

Every time I got abdominal pain for the next year, I blamed it on a cyst bursting and just took a Vicodin and slept. However, 2013, my body started to revolt. Diarrhea, vomiting, constipation, vomiting, diarrhea. I went to the Dr and was sent to a gastroenterologist. I had a stool test, a urine test, and many blood tests. Finding nothing, I was sent in for a colonoscopy and endoscopy. They found nothing, even in their biopsies.

Very shortly after that test, my life went to hell. My wife attempted suicide and I lived in constant pure anxiety for over 2 weeks. I couldn’t eat, I couldn’t sleep. I lost 30lbs. Constantly nauseated.

When I returned to Utah, I had to retrain my body how to accept food. I had to eat tiny amounts of food whenever I could. My nausea didn’t stop.

August or September 2013 I was out late and ate a plate of smothered nacho’s, almost exactly 3 hours later it came back up. There was no stomach acid in it. It tasted just like it did going down. This was confusing and strange. I stopped eating beef. For a little while my stomach seemed to settle. I had moved in with a friend family and I had less stress in my life.

October 19, 2014: I thought I had food poisoning. I woke up at 3am vomiting. I couldn’t keep anything down throughout the day, not even tiny amounts of water. After over 12hours, I was taken to the Emergency room. After several tests, it was assumed that a cyst must have burst. I was told that I would feel fine within a couple of days. A couple days later, I visited my Primary care Physician because my pain had not improved. I was sent in for a pelvic ultrasound to check on my ovaries. They found no obvious cysts.

By the 23rd, I still had not improved and went back to my doctor. He was very concerned and sent me back to the hospital for blood work and a repeated CT scan. CT was normal, but blood work showed a possible issue with my pancreas. I was given IV therapy with nausea medication and sent home on a strict liquid diet for a few days.

By the 27th, (after more doctor visits) I was referred to a gastroenterologist who I got to see on November 7th. After many tests over the next several months. I had a Hida scan and it was determined that I should have my gallbladder removed. (January 22nd 2015). After recovery and healing, it was decided that the gallbladder had not been my issue, and it was getting worse.

February 8th, I had a gastric emptying study and was diagnosed with delayed gastric emptying (or gastroparesis).

July 28th, had more tests and was put on creon, a pancreatic enzyme to help with digestion. Also started on a medication called Pentasa that I didn’t start right away (probably waited about a month)

November 9th, I had a capsule study. I had results in a little over a week and was diagnosed with Crohn’s.

Did I lose you yet? I’ll connect everything now. Crohn’s Disease is…an autoimmune disorder! (yup, another one!) When I looked it up, it is more likely for someone that has Psoriasis to also have Crohn’s, though it doesn’t cause it. So what is Crohn’s? My immune system causes inflammation (and ulcers) in my gastrointestinal tract. (Find out more here)

So, treatment of Crohn’s comes in a few levels. First is a special anti-inflammatory called Aminosalicylates. (This is my Pentasa). Now, Pentasa has done nothing for me, so my gastroenterologist added an immunemodulator or suppressant. It increases my risk of infection and puts me at higher risk of developing cancer. I am currently on Imuran on top of my Pentasa. If this class of medications do not work I will have a class called “Biologics” added to my medications. They have to be given via injection or IV therapy.

I thought that finding a diagnosis, I would be relieved. But I am still stressed and feeling hopeless. Partly because I am showing signs of other autoimmune disorders that are slowly showing their ugly heads. I don’t know where my life is leading me right now, but I have to keep trying to fight to keep positivity in my life. Just because I am sick, doesn’t mean that I do not want to have friends.

Maybe things will improve, maybe they won’t, but it is not worth giving up.

~The Resident Lesbian~

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