For those of you who probably are not aware I have a Chronic Pain Condition.
Who knew? But did you know there are millions of people around us every day who are suffering and fighting with them selves constantly and you might have no idea? Every once in a while we see a post on Facebook, reminding us that we don't know what other peoples struggles are, and to be kinder to one another.
I'm going to let you into my personal hell that is my story of how I was diagnosed with a Chronic Illness. So its going to be a tough read, and I thank you in advance for going along for the ride.
Chapter 1: Ouch, That Hurts Fall 2017
So this chapter is pretty straight forward. It started with, and I cant even remember which one, maybe my right knee. I don't remember doing anything to it. I just noticed something different.
Ouch. That hurts. Its Swollen too. What the heck. Oh well, lets take it easy maybe? Its getting cold, maybe I wont go to karaoke unless I have a ride or something, I'm sure they wont really miss me. I just drink Southern Comfort on ice and sing the same damn Audioslave and Chili Peppers songs every week. Maybe someone else wants to sing them.
Some time went by and regular things that normally wouldn't bother me, like moving around furniture or crouching in a cupboard seemed to cause incredible pain or discomfort. Then, my other knee would bug me, it seemed to go back and forth.
Oh its because I'm compensating for my shit knee, no biggie, just take it easy! My knees haven't been great, remember that time I think I tore it "play wrestling" with the boys on the gym mats in the mezzanine? I limped for 3 months, I don't think I went to the doctor about it either, wow I probably should have.. why didn't my parents take me? Oh right, I'm like a cat, and like to hide my injuries instead of using them for attention. Maybe they didn't know how bad it was? Wow I am a dumb, proud creature. Its ok, it will pass...
Chapter 2: Something is Wrong Winter 2017
By this time I was starting to realize that this wasn't going away. I would have maybe one day every week or so that felt a tiny bit better and then it would be right back again. It also startted to happen in my elbows and hands.
It was coming up on Christmas, and I was working Monday to Friday and we were slammed, which means no ducking out early for a doctors appointment. We just received a ton of new retail so that meant hundreds of new SKU's and I was the only person who knew how to create these in the system. I was just too busy to deal with it then, so I suffered silently, perhaps too silently.
Christmas is coming, so Ill have some time off, and see my family, it will be really nice. I cant wait.
I didn't say much to my family about what I was going through, but by this time, I couldn't stand for more than 2 minutes or walk for more than 10. It was really bad, but I didn't know what to say about it because I didn't know what it was. I didn't want to make a big deal about it because I didn't know what was wrong with me. I didn't want people to think I was getting fat and lazy.
But that is exactly what one of them said to me, that I was just fucking lazy.
I wont say who it was, and in hindsight, they are sorry they said it. I know that person will probably read this. I know that they are sorry, especially now that they know what it is. However at the time, this comment fucking destroyed me. I am a sensitive person, and I talk a big game but I am fragile as fuck both mentally and physically sometimes. I am also a stupidly proud person and don''t want to be that person who complains for attention. I don't want people to feel sorry for me. So if I do say anything out loud, ever about my pain, either physical or emotional, it might be 10x worse than I say it is. However, I was very visibly in a great deal of pain. I had a obvious limp and slow pace when I walked, and I grimaced quite noticeably, and audibly when I got out of a chair. So this comment upset me because I wasn't lazy, I was suffering. I thought that much was obvious.
So that kinda ruined my Christmas honestly.
Chapter 3: Paging Doctor Fuck-Around Winter 2018
So Christmas came and went, I could finally take a half day to see the doctor. Now I used to have the most amazing doctor. She was caring and kind. She was one of the only people to ask how I was doing, that seemed like she really meant it. However, she retired. Or so I am told. There are no doctors taking new patients where I live, and any that are, fill up before you can hear about them. However, the Clinic I went to, had passed on her clients to either one of the new doctors in that clinic as they were taking over the practice. Except, they are both going on maternity leave in staggering times of 2018, so its going to be a mess around, but they promise me in a year or two I will get to have one doctor.
I could tell immediately, the stone cold, un-caring face of this doctor as I told her how I was feeling, struggling to describe what it was maybe made her think I was making it up to get some real nice pain medications or maybe a green card. But I wasn't. I just wanted to know what was going on with my body, it seemed really bizarre to be a 30 and sound like I am 60 when I get out of a chair. I couldn't actually tell what she was thinking, I just didn't get the vibe from her like she gave a shit at all. She tossed some blood work requisitions forms at me, didn't tell me what she was testing for and sent me on my way.
So I did these tests, and I am a nightmare for nurses at the lab clinic. I really don't mean to be, but I have deep and tiny veins. I also couldn't straighten my arm all the way. It was too swollen. So my veins are so hard to get blood from and most nurses roll them which make me get light headed and sometimes nearly pass out.
At this first of many visits the nurse pulled 5 vials before the blood catheter clogged and they would have to poke me again with a new one and re draw the last vial. I agreed, but my body didn't. It had enough. I started to pass out. So I had to wait until I had my legs under me again, and then come back for the last one another day.
I'm going to skim over the re visits to the clinic to get that last vile, and the other times I had to go back to re check for weak positives or false negatives. Even though they are huge clues to my final diagnosis, its was long and annoying for me to go through at the time, I don't really want you to go through it either. But by the looks of the blood work, we were checking for Lupus, Rheumatoid Arthritis, and other Auto Immune markers in my blood.
I will go on a mini rant about the "no news is good news" policy in Canada's Health System. If you don't hear from them about your test results, it means nothing bad was found. No this isn't good news. It means we don't know what it is and we should keep looking. For you to not call me into the office to go over the fact these results yielded no answers, and we need to try something else, means you are shit at your job. I obviously have to come back in, just call me and tell me so I don't wait around a couple weeks when my lack of results have reached you 4 or so days later.
So when I did go in and ask about my results it gave me more questions than answers. Rheumatoid Factor was Negative. There was a weak positive on my Auto Nuclear Anti Bodies (auto immune stuff) to which my doctor wasn't worried about, but I was. She said she would refer me to a rheumatologist but it was going to be a long wait. So I saw the other doctor in the clinic for a second opinion and got re tested, negative. But the other doctor gave me some stretches to help me get going in the morning and prescribed some Naproxen for the pain.
Chapter 4: The Lonely Hospitalization March 2018
It turns out I am allergic to Naproxen. I'm allergic to a lot of stuff, mostly just sulphites, which are in everything. Though I have reactions with medications from time to time too. So having an anaphylactic reaction, having to use my Epi-pen, call 911 and wait for the ambulance is something I have had to do before, twice. This doesn't include the 5 or so other times Ive got to the hospital with out an ambulance or an EpiPen However, this was the first time I took that ambulance ride alone. This was the first time I went to the new hospital, and it was grossly understaffed that night. It was 4 hours before a doctor saw me. The triage nurse poked me with a catheter in my hand for an IV when I got there, but never used it. The EpiPen had done its job and since I had another one at home, they just let me go home after 4 hours of sitting there, by my self. They didn't give me prednisone for 3 days after my reaction like they usually do (to prevent a recurring reaction) I had no one to call to come get me so I spent the last $20 bucks in my wallet on a cab home from the hospital at 3 am because I couldn't think of anyone who would answer that call if I tried. When the triage nurse asked me who my next of kin was, I said no one. Which confused them, so I left my co workers name and number because if anyone needed to know I wouldn't be there in the morning its the person who has to cover my shift.
This is where the story goes from an annoying mystery, to emotionally damaging. I could deal with the doctors fucking me around, it just meant I had to push a bit to get some head way, and I was okay with that. Id been single for a while and it was in this moment I realized how alone I was. I honestly had thoughts of dying, and no one other than work noticing. This was the first time I actually shared what I was going through on Facebook. I was reluctant to do so, as I didn't want to be that person and I didn't want people to feel sorry for me. But I needed help to get through this. I had a mini mental breakdown. I sprang back, as I always do. However this was the first time I was starting to see the emotional repercussions of having an un-diagnosed pain condition. I felt helpless, and hopeless.
Chapter 5: Doctor Google Spring 2018
After I got out of the hospital I was told not to take Aspirin or Ibuprofen as they are in the same drug family as Naproxen. So what the hell could I take then? Tylenol. How much? Up to 4 grams a day if you need it. That is about 7 Extra Strength tablets a day. Okay so, sorry liver but yeah, even 7 doesn't do a whole lot. So this was about the time everyone on Facebook started offering well intended advice. Try Tumeric, DMSO, CBD, ect. I'm going to re visit this later too, and all though some of the ones I tried offered minor improvements to the symptoms, and your intentions were good, it was like trying to treat a gun shot with a band-aid. I didn't have money to waste either, some of this stuff, because its trending, is expensive and also difficult to acquire... legally right now. It also wasn't treating the cause, whatever that was, so whatever did offer relief, I had to use TONS of it. I couldn't even have a hot bath because I couldn't pull my self out of the tub. Nothing really helped.
I was also getting people trying to diagnose me VIA Facebook, which turned into a downward spiral of obsessing over my symptoms on the Internet. I had convinced my self on several and separate occasions, that I did have Lupus, Fibromyalgia or some form of Arthritis. My doctors were checking for these at various times, because I had he symptoms. So when all these were coming up negative, I had more questions then answers, and would jump on and obsess over the next one. I wanted answers, and solutions. I couldn't sit there and do nothing. But this was toxic and probably didn't help my situation at all. I wasted so much time and energy on it. But the wait lists for specialists are long. I'm impatient. Waiting it out would have been the best thing for me to do, but I couldn't. In April, I finally got a phone call for my rheumatologist appointment, they can see me on July 3rd.
Chapter 6: Identifying as Disabled Spring 2018
As this developed, I had to make very big changes to my lifestyle. I don't drive so I walk every where. It used to take 12 minutes to walk to work, it now took me 20-30 minutes. Some days by the time I walked into the front door of my work and saw the expression on the face of my colleagues at the desk change from greeting to concern, as the walk caused me so much pain, I couldn't hide it in my face, sometimes it would make me burst into tears. I couldn't live like this anymore. It was taking a toll on me mentally and very negatively impacted me at work. Those who worked closely with me were very understanding, and I still cant thank them enough for their patience and understanding through all of it. The doctors were afraid to try any medication for depression and anxiety because of my history with drug allergies. I really was doing everything I could, but there were days I would fall apart.
I was later told by specialists I should not have been working, but with out a diagnosis, you don't have a good reason not to work and still get paid, so I had no choice
I was also acutely aware of the struggles disabled people had when venturing out in the public. I suddenly realized why crotchety old people were so old and crotchety. It was an incredible challenge to do simple tasks like get groceries or wait in line. Waiting in line It was terrible, I couldn't stand for more than 2 minutes so if that line wasn't moving fast enough for me to reach the limit of trying to ignore the pain I was in, then I got pretty cranky. I was not having a happy life. That much was clear.
By this time I thought, I needed to swallow my pride from time to time and except that my body cant do everything it used to. By this time, since everything except fibromyalgia was ruled out, I was identifying as having fibromyalgia to conveniently explain my needs to others in one sentence. I honestly believed I had it at the time, since to diagnose fibromyalgia, you rule everything else out first. Believing my doctor had done that, it seemed this was the path I was on, and my appointment in July would merely confirm it. Looking back on it, I feel like I lied to people. For that, I am sorry. Fibromyalgia is actually much worse than what I have. But I otherwise didn't know what to say.
There are a scenarios where I struggled to explain my needs to strangers, even though I shouldn't have to.
Between my work, and my home is a huge construction project. The entire road, and side walk has been town up to be re done. This project is still on going, it started in the spring and was supposed to be done by October 1st, and still isn't done. Going around this site results in a 15-20 minute detour to an able bodied person in the opposite direction. (on foot) However the first time I tried to walk my usual path home from work, I was stopped by one of the flaggers. They told me the side walk was closed, and I had to go around. "I cant go around I have fibromyalgia" She looked at me rather puzzled "Is that some kind of phobia or something?" At first I thought she was mocking me, but I ignored it. "No it means I am in a lot of pain and walking is already really painful as it is" Then her tone seemed a bit more sincere "Oh you are disabled..." (This was the first time anyone had ever referred to me as disabled. Honestly the words hit me like a brick shit house) She clearly was just trying to do her job, she kind of looked around and finally said "We'll okay, I just don't want to get in trouble, if anyone says anything to you, you tell them I tried to stop you" I agreed, and thanked her and like the bad ass that I am, I walked on that closed side walk every damn day. One of the side streets in this zone has a minor short cut. It is one of many otherwise dead end streets along the road, so I used this to my advantage. I would duck down this street as it was closed to local traffic only and use a short cut that came out near my street. I had, with out words, convinced the crew I lived on that street so they kind of had to let me through. It wasn't the only way home, but its was my only way home.
I didn't speak up about my being disabled often. Only when there was no damn way I could suffer to walk a detour there and back 5 days a week for several months. No freaking way. there were a lot of times I sat in frustrated silence at able bodied people, or their back packs occupying the last seats on the bus. I even went to Vancouver to go to a concert with my friend at a night club. Great fucking idea that was, I cant even dance. But this person was really important to me, I don't see her much and we were getting to see an artist that pioneered a music genre that means so much to us both now. I really didn't want to cancel, and I didn't have much to look forward to these days. We set up camp at some stools that over looked the stage and dance floor, had some drinks, I stood and danced when I could in front of my stool, for 2 minute intervals from time to time and sat back down. People to either side of us changed through out the night, and it had become apparent that other people were eyeing up our spot. I started to notice some eye burning in the back of my head after a while. My friends boyfriend guarded our stools when we went to grab a drink, go to the bathroom or stand up for my 2 minute dance interval. Shows go super late so it wasn't completely over but we had a good night. so when we went to leave, the girl burning a hole in the back of my head brought up an image on her phone and showed it to me. It was Black Background, White Text, and it said Savage. I was kind of puzzled at first, but we were leaving anyways, so I just made a "wtf" face, shrugged it off and walked away with my friends. If the stool was what she wanted, she could have it, we were leaving. When we got outside away from the loud music, I explained to my friends what I had just experienced. I cant even be sure, I can only assume it was because I was hogging the stool all night. It was crowded, its not like my limp was obvious when you are playing frogger getting around a busy night club, so I will give her the benefit of the doubt. But it made me more acutely aware of how so many of us suffer, not so obvious struggles. By this time I got really exhausted explaining my limitations to people all the time to my peers, I didn't feel I owed it to strangers.
This instance bothered me a little, and it made me realize that big cities are not disability friendly. Standing on the sky-train and waiting as a foot passenger on the ferry is a nightmare.
PSA: Those seats are not for your back pack. I have social anxiety and I don't want to sit next to you either. I'd rather an empty chair between me on either side too, but when its that fucking busy, you suck it up and share. You are being an asshole. Just because I look able bodied, doesn't mean I am, and I shouldn't have to say I have something like fibromyalgia for you to let me have the seat.
Chapter 7: The Wait is Over July 2018
Finally. I was nervous and excited. I was excited to finally have answers, but I was also nervous about how I would feel if we didn't have answers. By this time I was in so much pain and if they couldn't help me, I didn't know how I was going to live like this. The specialist was out of town, about an hour drive. My friend has a specialist they see in this area too, and we conveniently had appointments on the same day, so he offered to drive me.
I felt good about this because it wasn't out of the way so much for them compared to anyone else I would have swallowed my pride enough to ask. I don't like to ask people for much, as a strong independent woman who has her own place I have enough to get by on my own, but not much wiggle room. So even giving people whats fair for gas comes out of my over draft, so I don't ask for rides if there is a manageable alternative. I also don't like to bug people.
The specialist, was amazing. She reminded me very much of my family doctor who had retired, she even knew of her. I spent over an hour in that appointment. She was thorough, and caring. I as she started to examine my joints and range of motion, I asked her flat out, if we were looking at fibromyalgia. She said no, and explained why. She said, all though I have a laundry list of symptoms, she knows its not fibromyalgia, because I have inflammation. my family doctor should have been able to tell me that, honestly... With fibro, The joints will still bend all the way if you manipulate them too, it just hurts. because everything hurts when you have fibromyalgia, in short your brain is constantly firing, or mis-firing pain signals all the time, its neurological which is why there are lots of pain and inflammation treatments that don't work So all though it wasn't an un warranted thought for me to think I had it, she knew this wasn't it. After my physical examination, and questioning, we sat down and she took out a sheet of paper. She wrote out and showed me 7 different types of arthritis I thought there was only 2, osteo and rheumatoid and crossed off which ones she was sure I didn't have and explained why. It left us with 3. She explained how we could narrow that down further with blood work, but since treatment for it was all very similar, we could start that right away, and tweak it based on that final diagnosis. Either way, it was auto immune arthritis. We just needed to confirm which one. Then she wrote out drug options, on a scale of light to heavy medication, there were maybe 5 of them. I wish I took the sheet with me And we crossed off ones I might be allergic to, ones she thought might not be effective enough and ones that they don't often recommend to women of child bearing age. She also suggested some physio therapy to help get me active again once I had relief from my medication. Adjusting to my medication was going to be a journey, but she had a plan. I was starting prednisone for relief now that I would take every day, then my other long term medication, methotrexate, was only once a week. It takes 6-8 weeks to work so the prednisone is to tide me over till the methotrexate takes over, then I wean off of prednisone as its not advised to stay on it for long periods of time. However after one day of being on it, I could bend my elbows and knees again, for the first time in almost a year.
The funny thing is, if the hospital had given me prednisone when I was hospitalized in March, like they usually do when you recover from anaphylaxis, I might have had an earlier clue to provide my doctors. Prednisone is an auto immune suppressant. This is why its used to combat anaphylaxis, and auto immune disorders as they are essentially your immune system over reacting to something. I would have noticed changes in my pain symptoms if they had given it to me back then.
But after this appointment I finally had some answers and finally was speaking to someone who actually cared. I cant tell you how happy this made me, how relieved I was. I really was going to get my life back. Words, really cant describe the relief. I couldn't wait to tell my loved ones that eventually, everything will be ok. After all this had effected some people very close to me, they wanted answers just as much as I did. We made so much progress, in one hour. One hour with the right person literally changed my life. Just a little more digging and the final answer would be there.
Chapter 8: The Final Diagnosis Sept 2018
We have 3 finalists so lets test to see which one is the winner! More blood work Yay! Its okay, this one was only a couple of vials, I took this one like a champ and I was happy to do it. I could actually straighten my arm much better now to make getting a vein a little easier for the nurse. I then just had to wait for a follow up with the specialist, and set so many drug alarms in my phone to keep my medication schedule trucking along. I did well with it, and had very mild side effects to my medications other than fatigue. I'm prone to very upset stomach so this was a relief that it was only minor.
So off to the specialist again I go, this appointment was pretty quick. We had our answer.
Sero-Negative Rheumatoid Arthritis (SNRA) In short, its an auto immune arthritis that does not show a Rheumatoid Factor (RF) in blood work, but its still there. This is why there was no RF in my first rounds of blood work I did in the winter time. SNRA is the less severe than Sero-Positive Rheumatoid Arthritis (which does show RF in blood work) However SNRA can evolve into SPRA over time.
So there we have it. My diagnosis. I will be on the secondary medication methotrexate for the foreseeable future.
In Closure
When I said "I will talk about that later" in this post I meant it, but it will be in Volume 2 in a series of posts about living with Chronic Illness, instead of at the end of this post like I had originally planned. Creative process is neat.
There is a blog someone who actually has fibromyalgia shared with me and in my next post about this topic I'm going to talk about some points in this blog and tell you why they are so important and why they stuck with me so much, and why I wish I read it before I started sharing my symptoms and struggles on social media.
If you are some how not tired of hearing about this topic after my super long post, I will share the referring post for you now. If not it will be highlighted in my next post regarding this topic, so you can save it for then too.
https://broadly.vice.com/en_us/article/mb4kzx/how-to-support-people-with-chronic-illness
The only other thing I want to say is this, if you read this whole post, please learn from my experience. If you have self diagnosed yourself with medically unlicensed peers, or Dr. Google, please don't.
Remember when I said that one hour with the right person literally changed my life forever? Keep pushing your doctors, all of them, any of them to get you to the person who is capable of helping you. You are not going to get a short cut to a diagnosis, I'm sorry. We are an advanced society, but not that advanced. There is still so much we don't know about our bodies and the environment in which we live in. There are new things happening in the medical field every day, new conditions being discovered and treatments for them. Of course there is a portion of the medical field that is a money making industry, every sector has corruption in it, it doesn't make the whole system a fallacy. Just use your opened eyes to be able to recognize a doctor who hears your needs. Someone who treats you like a person and not a pay check. They might be hard to find, but they are worth fighting for.
Don't give up. Get a real diagnosis.
Don't just be a victim, be a survivor.
No comments:
Post a Comment