A Very Perplexing Situation

It’s been the same every year. July/August is the time I catch a flu every year. At other times of the year, I can get sneezed at, or coughed at, nothing would happen. But come July/August, no matter how I try to evade it, it will come out from an unexpected corner, shout ‘BOO’ and strike me.

This year was no different. 

The mother of all flu struck in mid-August. I did not have any sorethroat at all this time and only had a very mild fever. By one week I was well again. And it didn’t end up in a cough! No cough at all this year. I thought that my immune system must have gotten so much stronger. How wonderful I had thought.

I started to have terrible joint and muscle pains. But then again, all these viruses cause joints and muscle pain. But it got so severe that I was having trouble walking. I went to the ER and the doctor did blood tests and swabbed for influenza as it was ‘influenza season’. Everything came back normal and he said that I most probably had a post-viral myalgia. The doctor told me to get more rest and wait it out.

As time went on, I started to have more pain. My bladder hurt to the point I thought I was down with a severe bladder infection. And then my back hurt where the kidneys are. Every movement hurt so much. Once again, I went to the ER. They again did blood tests and this time for the kidneys and liver too. They also tested my urine. All results came back excellent! I was in ‘perfect health’!! The doctor said if I was worried, I could take some antibiotics for a week. I decided against it as all the results were excellent. I thought it could be my ‘voiding dysfunction’ which was acting up due to me being ill.

And then I started jumping up from my sleep in the middle of the night from pain. I felt as though fire was coursing through my veins. And then a fiery itch would start. My muscles were so weak and my joints felt as though they were ‘locked up’. My bones felt like they were corroding. I couldn’t walk down the stairs without feeling as though I could break my ankle at any point of time. Climbing up the stairs was even worse. It became so difficult to even bend my knees. 

The fatigue was terrible and I started feeling like I caught some bug.  I started feeling feverish but yet I had no fever. 

As the haze this year was so very bad and extra toxic, I thought it was the haze that was affecting me. I had gone to the hospital twice and twice the blood tests at two different times came back excellent. 

And then the intensity reduced and I thought I must have fought off whatever bug that had invaded me. I continued to move and walk as much as I could. 

It was then that I suddenly noticed some red dots at the bottom of my legs. They didn’t itch or hurt. And they were just a few little dots. So I just left it but observed them. Soon they became bigger than dots and started to spread to the back of the bottom of both legs. And they turned dark red and then became purple. 

I then went to see a doctor about it. He said I had musculum contagiusum virus which spreads by contact! Where did I get that from? Could it be from the holiday? The doctor had no idea too. He told me that I would be fine after a few weeks or a month. He also said that it is a self-contained virus. I came home and threw away my razor and bath scrub. I was worried about spreading it to both the guys that I told them not to hug me or even touch me. I thought my immune system was really screwed to have contracted such a virus. 

And then the stomach pains came. They were not gastritis or even reflux pain. The pain felt so different. Something was really not right. By now, the red spots had spread to my knees and thighs and to my arms. Funny that my body and face were spared. It was only the legs and arms. Which virus does this?!

By this time, I was in so much pain that I felt as though I had arthritis, fibromyalgia and rheumatism all at one go. The 1 to 10 pain chart that the hospital used to gauge pain could be thrown out of the window. I was on Richter scale 9 to the point tsunami had wiped out everything. My joints, nerves, bones and muscles were in chronic pain. I could barely walk by this time. I was shuffling. Every movement took great effort. 

I became delusional. I thought finally Death had caught up with me. I managed to evade Death for 10 years and now my time is up.

I thought I had lupus, or even multiple sclerosis. Maybe I even have what Stephen Hawking had! Or worse, Parkinson’s.

I thought maybe in my past life I was a murderer or rapist or even a psychopath serial killer. And karma has caught up with me. 

Or maybe I had cancer and I was in my last days. 

Maybe I was imagining all of these and that I was actually losing my mind.

It came to a point that I was ok with dying. 

I slapped myself mentally and went to see another doctor. He said I had folliculitis. I told him that I had used up every single steroidal cream in the house. Hydrocortisone, Elomet, Fucicort, Beprospan. You name it, I’ve tried it. If it was folliculitis as the had doctor said, it would have stopped it. He said sometimes oral antibiotics are needed plus a soap with sulphur to stop it.  I told him to write me a referral to see a dermatologist as I wanted everything to stop. I then asked him about this fiery pain coursing through my veins. This extreme pain that I was in. I felt like I was Elizabeth Sherman from Hellboy. I felt like I was doused with kerosene and set on fire. He gave me vitamin B12 to help the nerves.

I made an appointment to see the dermatologist that very same day. And when I saw the doctor, and after she saw my legs and heard me explain the whole history of what had happened, she smiled a very sad smile and said,

“You have vasculitis.”

What?!? 

What on earth is that?!? 

“It’s an auto-immune disease and your body decided to attack itself after an illness.”

I had disbelief on my face. 

“Did you fall sick?” 

“Did you get joints and body aches?”

“Did you get bad abdominal pain?”

“And the spots started only at the bottom of your legs!”

Everything was a yes. 

“It’s confirmed - you have vasculitis!”

Shit.

I still couldn’t accept what she had said. 

“Your immune system attacked your blood vessels and they became inflamed and burst,” she continued. 

She said my immune system had fought off the virus but was so over stimulated that they continued fighting even when the virus was already defeated. They turned and attack myself. 

The bad news was that vasculitis could attack the organs too and cause severe damage. The dermatologist sent me for blood tests and urine tests. When I went back to see her the next day, she said the blood results were fine. My kidneys and liver were still functioning well. My red blood cells were still good. That meant I wasn’t bleeding to the point of being anaemic. I was still ok. Since I was still ok, the doctor decided not to put me on steroids. But I was to return the following week to have blood and urine tests again.

The dermatologist also said that once a person has vasculitis, it is for life. It doesn’t go away. And one would never know when it would strike again. She said it’s like having asthma. No one knows when asthma could strike or when it could just lie dormant. 

I felt numb upon hearing this. I have fought so well for the past 10 years and had gotten to a place where I could actually have bites of outside food here and there. I could tolerate food with high salicylate levels so much now. My health had improved so much that I only fall sick once a year without consuming supplements where else people who eat supplements fall sick so many times a year. I was at a good place in life and this shit had to happen. And of all things, it had to be an autoimmune disease. 

I was still in so much pain. 

The pain peaked the following day to the point that I had to shut my mind off in order to survive the day. By night time, I decided that I couldn’t wait until the following week to see the doctor again. I went to the ER the next day. I was in so much pain that I begged the doctor for steroids!!!! The word ‘pain’ was an understatement. I was in the lowest level of hell where the demon called Pain had overtaken my body. I told the ER doctor that I wanted a gun to blow my brains out. ( I now think that chicken pox pain is a walk in the park!)

He again confirmed that I had vasculitis and he said it causes pain to such levels. He said it also causes abdominal pain. That was what I had been having. He referred me to a rheumatologist. And they took blood again to run more tests. 

They injected Tramadol into my veins to give me some relief. 

Since Tramadol causes nausea and vomiting, it is usually administered together with an anti-vomit medication. But I have bad side effects to anti-vomit medication. It causes a feeling of doom and a panic attack for me. Besides, I don’t get nausea or vomit with Tramadol. So I did not take the anti-vomit medication.

The rheumatologist said that it’s definitely vasculitis that I was having. She believed that it was virus induced. My blood tests came back excellent again. And I tested negative for arthritis. And based on the blood tests results, it wasn’t lupus too. She said my nerves had become so overly sensitive from the viral sickness. They had become heightened. So she put me on LYRICA to help settle the hypersensitivity of the nerves while the body slowly overcomes the vasculitis attack. Steroids is the last option if the body is unable to overcome the vasculitis attack. 

Right now LYRICA is heaven sent. The pain has reduced so much. But the side effects are drowsiness and dizziness for me. I’m currently trying to adjust the timing of the medication so that when it wears off, I’m able to at least function for that period of time. The rheumatologist said that it causes brain fog too. Brain fog is better than pain anytime. 

Looking back at my food diary where I noted down all that was happening for these 1 1/2 months, everything now makes sense. The pain, feeling ill, the fatigue and the rash. Right now I am unable to feel anything. I just feel numb. Maybe partly it’s due to the medication - brain fog. Maybe it hasn’t sunken fully yet into my brain that I have vasculitis. Maybe I’m just exhausted from fighting the pain. I’m currently still feeling terribly ill from the vasculitis. I'm just going to rest and stay numb and blah until I can find it in me to decide what's next. 

And then I’ll try to rise up again. 

P.s. I have written posts for this blog until mid-November.