When you needs answers…

First off I just really want to say a big thank you so so much to everyone who has commented or even just read my posts over the last few months. Your support and comments have meant the world to me. Not even one bit of negativity or bashing from anyone. Just all kind thoughts and support and I really really appreciate it. This is why I love blogging and all of you guys!

As you may have guess from the title I want to write a little about things that have been going on with me in part over the last few months but really ever since all of this started years ago. In all of this there is one thing that has really really been bothering me. The need to basically “self-diagnose” because our health care system is so broken that it takes 5, 10, 15, 20 plus years to get a diagnosis and for me at least the diagnosis’s I have gotten just never really seem to fit or make sense fully.

I kind of feel like all that is now coming to a head and that I am actually starting to get somewhere, but not because of my doctor or the healthcare system here in Nova Scotia (or Canada in general), but instead because myself, my husband, my mom and my aunt (who is a nurse) have been doing tons and tons of research and trying to really figure out what is going on with me.

The health care system here has really failed me as it has so many people for both my mental and my physical health. Sure we have free health care. I can go to a hospital and not worry about getting a bill for it or have a MRI done in a provincial hospital and not worry about the bill, but at what cost? If I had a broken bone or a very typical illness or an emergency, this is great and I would get the help that I need.

However, if like myself or the thousands of people in my province  or the tens or even hundreds of thousands of people in the country like myself who have a “invisible illness” this is not the case. I have waited probably half my life for a proper diagnosis and treatment for all my symptoms. The wait time for specialists such as Internal Medicine, Cardiology, Neurology, Rheumetology and tons more (due to shortages as we do not pay them enough) is months if not years.

The wait for public funded services such as Mamograms, CTs, MRIs, Physio, etc is months or years as well unless an emergency in which it can still be a few days, weeks, or even months sometimes. I have a been referred to a pain clinic and my wait time as of right now is 9 to 12 months, once they find a doctor, they do not even have a doctor at the moment! She retired and there is literally no one to replace her. They have been searching for months. So when they finally do find one my wait will be another 9-12 months after that.

So what does that mean? I had to be put on the lists for places, 1, 2, 3 or more hours away and hope that maybe just maybe they will have an opening before the original one does and I will have to drive half way or more across the province to get the help I need and that is not even the worst of it, some people have to go out of province, sometimes 1, 2 or 3 provinces away to get the help they need.

It’s no wonder myself and so many other people are turning to self-diagnosis. My family doctor has been my family doctor now for almost 20 years. He is a great guy and I used to trust him completely. Lately though he like so many other family doctors around here have to double and triple book patients every 15 minutes because there is so many of them. I get maybe 5 min if I am lucky with him. By the time he reads my chart he is already thinking about the next patient and not giving me his full attention. It’s not his fault. He works from 8:30 a.m. to 9 p.m. 6 days a week. He fills in for the on call doctors. I get no where because he doesn’t have time to listen and just rattles off a prescription.

The waiting list for Nova Scotian’s without a family doctor has topped 50,000 last year from 10,000 less then two years before that. Doctors are retiring or moving and there is no one to replace them fast enough. Same with nurses and other health care professionals and health care service providers. Most are understaffed, underpaid and don’t have the resources they need. I know it could be worse and probably will be at some point.

So because of this I have been making a list of my symptoms, which I will list below and I have been doing research on sites such as WebMD, Mayo Clinic, University hospital sites, etc, as well as watching a ton of YouTube videos by people suffering from similar symptoms to see what their diagnosis’s are and see if I can find some common ground with some of my symptoms. Now, I am a Type 2 diabetic and I do have Fibromyalgia and those I do not doubt. It’s plainly obvious I am diabetic and medication works. As for Fibro I am sure I have it and don’t doubt that diagnosis at all, however I do not feel that it even covers a quarter of my symptoms.

Here is a list:

  • – constant fatigue that is not helped by sleep
  • – brain fog or a fuzzy feeling in my head
  • – weakness in my neck, arm and leg muscles
  • – difficulty concentrating and finding words or forming sentences
  • – constant headache (feels like a tension type headache or pressure and in the back of my head around where my skull meets my neck and basically all over)
  • – head feels heavy and I feel like a bobble-head doll (literally swaying and bouncing feeling even when sitting or standing still)
  • – pain in my head, neck and also in my back, and legs when standing
  • – numbness and tingling in my extremities
  • – constant thirst (could be from my diabetes but happens even when my sugars are controlled and stable and not going up and down drastically and are in the normal range)
  • – constantly have to pee every 15-30 minutes, very little pee (same as above, even when sugars are stable, etc)
  • – sleep disturbances (waking up nauseous, dizzy, heart pounding)
  • – feel dizzy when standing from a sitting or laying position (sometimes I pass out and fall or just black out, I can still hear when my vision starts to fade into a “black out” and stand but I can’t walk because I have no sense of direction or where I am or what is around me)
  • – heart rate increases when standing from a sitting or laying position (when laying down I am about 70-75 and when sitting 80-85, when standing I go to 120 or higher quite often, but not always. I have gone from 70 to 145 in about 3 minutes)
  • – nausea and vomiting (I pass out just about every time if I bend over the toilet, a bucket, whatever while vomiting so I have to vomit in the bathroom sink then clean the sink after or hold a bucket on my lap while sitting).
  • – when sitting my hands and feet get really cold and blue or mottled looking
  • – when I stand my feet and shins get red and hot the longer I stand same with my hands and arms below my elbows (this is not super noticeable and not bothersome)
  • – when standing up my vision blurs, sometimes I get black spots (not floaters but almost like grey or black paint ball shaped spots, sometimes somewhat see-through)
  • – ringing in the ears
  • – balance issues and falling easily
  • – issues swallowing sometimes out of no where
  • – get hot really easily and feel like I am going to pass out especially when sitting up or standing, face flushes but my hands and feet are still cold
  • – heartburn, vomiting undigested food a lot
  • – chronic diarrhea and constipation both sometimes at the same time (ie, constipation for hours followed by diarrhea when I can finally go)
  • – shortness of breath
  • – chest pain
  • – palpitations
  • – increased sweating/night sweats (I still feel cold)
  • – asthma like symptoms even though I have been tested and pass the tests, my doctor still treats me with inhalers.
  • – shakiness
  • – panic attacks/anxiety
  • – depression

So what do all of those symptoms have in common? Well, for the longest time all I could say was “Hell if I know”. I could not get any doctor to make sense of them. At that point I had not actually checked my heart rate and I have never taken note of my blood pressure when standing so they would not have had any of that information at the time. I also likely never listed it all out at once, It was symptoms that came on over months and I would complain about them and he would try a medication to treat the symptom without really trying to get to much at the reason why. After I while I would stop mentioning it but was still happening and I would just mention new ones as they came along.

After my aunt did a lot of research she mentioned to me a couple months ago it sounds like POTS or Postural Orthostatic Tachycardia Syndrome which is essentially not enough blood getting back up to your heart when standing from a sitting or lying position which makes your heart beat faster and causes dizziness and can sometimes cause syncope (fainting) in a certain percentage of people with it. It is commonly caused by or associated with EDS or Ehlers-Danlos Syndrome but can be caused by other things. She wondered if I might have EDS due to the pain I was in and the fact I have dislocated joints a lot more then most people and the fact that every scar I have (and I have a few) are keloid scars which is common in people with EDS because of thin stretch skin.

However EDS didn’t quite fit because even though I have dislocated joints it wasn’t doing day to day activities it was from injuries such as falls and such. I do not appear to have hypermobility of joints at all as an adult in fact quite the opposite. As a child I was only mildly hypermobile but I was into a lot of sports, gymnastics, figure skating, etc. I also do not have stretch or thin skin even though all my scars become keloid scars, the skin itself does not stretch far and does not rip easily at all.

POTS fits almost all of my symptoms perfectly. I finally felt like I had a possible answer that made sense. While researching to more I wondered if any of my previous car accidents had anything to do with it. Up until my car accident in 2009 I was doing really well and though I did not think I got hurt in the car accident I am now starting to wonder if it did cause some issues, since then I have been in 3 more. One where we were hit head on on an 80km road by someone turning left and then the two with deer. The last of which was just a few months ago. 3 of the 4 accidents totaled the cars we were in. Only the last one did total the car but it came super close.

On a POTS Facebook group someone asked if others felt like they were “floating” all the time. I replied and said that I yes but more of a “bobble-head” sensation and someone else replied to look up Craniocervical instability and I did and it fits the rest of my symptoms perfectly and even explains the cause of the POTS if I do indeed have them. Now, I know the dangers of self-diagnosing but at the same time, when you have no other choice you start looking for answers and I am wondering if I could potentially finally have them. I know I as well I have said that before and again that is the danger of self-diagnosing but again at this point I feel that I really need to advocate for myself and really need to push to be checked and tested for these two things. I am really hoping for once I am on the right track but I know there is a good chance we could be wrong as well.

I just wish I knew how to get the help I need to get to the root of all the symptoms whether or not it is these two things or something else all together. I am so tired of being tired and in pain. It’s affecting my life so bad right now that I am struggling so hard to cope and I am concerned of the toll it is taking on my mental health. It’s not like I can just go to a new doctor, since there are none to switch too. So I have to keep trying on my own to get them to listen and help me.

It all came tumbling down

Image Credit: PublicDomainPictures from Pixabay

Trigger warning: This post could be triggering to some, please read with caution.

I am in a bit of a dark place right now. I am crying a bit as I write this but I need to get it out. I am really having a hard time right now. More so than I ever would have imagined. The car accident has really affected me in more ways then I could ever really have realized. I have become depressed, anxious and having panic attacks, all things that I really thought I had put behind me, that I had gotten under control and then even seemed to have pretty much disappeared. I have been doing so well, even through some pretty rough and tough times. I have been off medication years and not having many symptoms of anxiety and none of depression at all.

Well, it all came crashing down the day before yesterday when I was driving on my way into work in Bridgetown (I will get into that later in the post more) and I will admit I have been nervous since the accident and even to the point of crying or shaking a little bit while driving. I have had nightmares and just your typical nervousness or anxiety after an accident, or so I thought. We picked up the rental on Tuesday (a week ago) and I drove it to Digby with Eddie in the car with me to get a coffee for him than home. I drove him into work Wednesday and drove back and was nervous but nothing major, at least I don’t think. Mom picked me than him up that night cause I accidentally locked myself out of the car and house.

Thursday I had to work at 9:15 or 9:45 I can’t remember. I left about an hour early and was going down the old highway. At some point, while driving I remember thinking about the accident and I started crying. I am not sure why, hitting deer around here is quite common and there are always ones along the road along with skunks, raccoon, porcupines and sometimes bears. You see it all the time. Lots of drivers hit deer and while you feel bad about it (it’s not my first time) you get your car fixed and you move on. If you have injuries they heal and you move on. For some reason though this really bothered me that the dear walked away injured.

Department of Natural Resources said they don’t try to do anything if they wander back into the woods they just leave them be, let nature take its course. Makes sense I guess. I just can’t get the sight of the deer standing in front of me staring straight at me out of my mind though or the feel of the car hitting it. I didn’t see it coming. I never saw it to the left of me at all. I did not see it till it was standing still in front of me caught in the headlights as its head turned towards me.

So anyways, on Thursday this crossed my mind a few times as I was driving and I found tears rolling silently down my cheek which progressed to light sobs, all the way into work. I got there, parked, wiped the tears off my cheeks, took a deep breath and walked from the parking lot into work. It was bitter cold. So I figured the redness in my face could be explained by the cold or maybe I didn’t even really think about it. I’m not sure.

Work went okay. I was really sore and had a hard time getting up onto my chair and my abdomen and hip were really hurting. By 5 o’clock I was glad to be heading home and was exhausted. I had been asked to work in Annapolis the next day. They needed someone and my manager, aware I was sore and tired thought it might be better. So I left for home and it was almost dark by then, just a little bit of light left. All the way home I kept seeing things everywhere and I was really nervous and jumpy and again found myself half sobbing all the way home.

Friday I worked 1-5 in Annapolis. I will admit I was excited to work in a new branch and to learn some new things. I took Eddie to work for about 10, he worked at 11 but wanted to be early. I had 3 hours to kill and was hungry but didn’t want breakfast at McDonalds so I drove the short distance out to Point Prim Lighthouse and walked to few feet needed to just be able to see the lighthouse, the ocean, the cliffs and Victoria beach across Digby Gut.

I had been feeling pretty down since the accident and even before that ever since the aftermath of having my toothttps://storyboutagirl.org/photography/point-prim-lighthouse-april-14-2019/h pulled. I had so much anxiety about getting it pulled and then everything that happened after just increased my anxiety overall. So I was thinking the view before heading to work would cheer me up a bit and the fresh cold wintery air might just help me feel a bit better.

I left there, got food and headed to Annapolis taking my time. I was fine through the 50 & 60 km areas. But after getting on the highway as I got up to 70, 80, 90 and closer to 100 I started shaking and feeling really anxious again. I drove as far as Smith’s cove and got off the highway onto the old road, that part’s mostly 50, 60 & 70 km and the road is windy. So I went slow and my anxiety eased a little. Eventually, that ends and you have to go back onto the highway and over the Bear River bridge, I did and then I went off the Deep Brook exit and headed past my place and up the old road into Annapolis. Before I even got past my place I was shaking and crying lightly again. I pushed on and got to Annapolis, parked, dried my eyes and went to work. The way home was much of the same.

The weekend we didn’t go very far. I’m still in a fair bit of pain and really sore all over. I think that the accident has probably caused a Fibromyalgia flare. So I am really in pain pretty much all over. I am suffering from really bad fatigue, I outright feel depressed. I don’t want to do anything or go anywhere. I don’t even really want to leave the house. I think we went out once and it was much the same, anxiety and tears but we got were we were going and made it home.

Fast forward to Monday morning. I was scheduled to work in Bridgetown for 9:45. I started out early about 8:30 because I knew I was anxious and would likely get teary and drive slow. It was much of the same. I got to just before Bridgetown and was driving by a farmhouse with a big tree in the front yard. There was a flock of birds in the branches of the tree and as I drove by they startled and flew in front and over the car. I could see them coming at me and gliding over the top of me and over my hood and in front of the car down low in front of the grill. Well to put it politely it scared the living shit out of me. I thought I heard a clunk. I wasn’t sure if I hit anything.

I started screaming, and then crying and shaking all the while still driving at about 85 to 90km on the road. The tears started coming hot and fast, I started sobbing to the point I couldn’t catch my breath. I knew that about half a kilometer or so down the road on the left-hand side just around the bend that I could see that there was a church and a big parking lot and there was no one else on the road. So through my tears, I kept driving and pulled off at the church checking to see no one was coming at me. At this point, the sobs were coming hard and fast and I could barely see. I figured I just needed to pull over, let it out and then calm down and move on. Boy as I ever wrong.

I couldn’t stop sobbing. There were more of the same birds, I think they are called Brewer’s Blackbirds, in the yard of the church and they kept stirring and flying to the trees and back and every time they did I would start sobbing and even screaming all over again. I had put the car in park but it was still running as it was kinda cold and I had the heated seat on. My legs at this point were really tingling and I felt week. I called my mom as I knew at this point I couldn’t drive any further. When sobbing really hard I would close my eyes and I would see the bridge ahead of me (even though it’s 35-40 km away) with the deer between me and the bridge and it stopped and was staring at me as my car bore down on it. I could see look in its eyes, even though I am not even sure I ever did. Maybe that parts just my imagination.

Mom tried to calm me down. I am asthmatic as well and crying, hyperventilating or panicking will often set off an asthma attack as well, so of course, she was concerned. She tried for a few minutes to calm me down and when she couldn’t and I was just hyperventilating worse and worse she asked me where I was. I told her as best I could in between sobs and hyperventilating and she told me that she was coming to get me. At that point my manager called me from Bridgetown (it was still early and I was not late yet), I answered and she asked me what was wrong because  I was still sobbing and still hyperventilating to a point. I tried to explain. I told said my mom was on the other line. She said she would hang up but for me to text her when I was okay.

Only I never was okay. It just got worse and worse. Mom and Dad climbed in the truck and kept the phone on speaker and headed out towards me but they were at best 50 minutes away. I was getting worse and could barely feel my legs and my fingers were going tingly. At this point, while trying to talk to me in which I was only responding in between screams, sobs, etc with one or two words or even grunts, she and dad decided to hang up and call 911. While they were on the phone with 911 I had managed to hit the hazard lights on the car and I turned it off because I couldn’t find the hand brake, thankfully it was only a button to turn it off and after a few tries, it worked.

Apparently an ambulance going back to its base in Bridgetown went by me (I didn’t notice) and they thought it looked off and were in the process of turning around just down the street when they actually got the call from 911 to go back to the church. So they there pretty quick after mom called. I had hit the unlock button as things were starting to get bad just in case I passed out thankfully. They got there parked and came out. There were two of them, a young guy named Travis and a young woman named Emily. Travis climbed in the passenger side beside me and Emily came around the driver’s side to my window which either Travis or I got rolled down, not even sure which.

They tried for what felt like hours but which they told me later was about 35 minutes to calm me down. At first, I was gasping for air and hyperventilating still and every time I closed my eyes I would see the deer and/or hear the birds and I would start all over again. Slowly they got me calmed down a bit then the birds would fly around or make sound and I would start screaming again. Finally, they got me calmed down enough to get me sitting with my feet outside the car and they brought the stretcher over and I tried to get on it but my legs gave out and Travis leaned forward and caught me. I remember him saying laughingly “okay, you are going to give me a great big hug now and I am going to lift you and guide you to the stretcher”.

After getting me on the stretcher they got me in the ambulance and hooked up to the heart rate monitor, blood pressure cuff and oxygen monitor. My heart rate when they got me in there was in the high 160s, my respiration was in the high 30’s/low 40’s and my oxygen was in the low 90s. They showed me each of them and told me where we needed to get them and that I had control and that with their help I could get them back where they should be. They tried some breathing techniques which were starting to work but then I would hear the birds outside again and start to panic again. They were concerned about my heart rate and said it was tachycardic so they did an EEG which also showed the same thing but showed nothing else wrong.

Emily climbed in the front and started driving and Travis stayed in the back with me and continued to try and get me calmed down. We both watched as my heart rate and respirations climbed and my oxygen dropped as she picked up speed so he called into the doctor who told them to turn off the lights and slow down as he figured that was adding to my anxiety after that Travis was able to really talk to me and calm me down and I was doing a lot better by the time they got me there. They took me through triage and got me in a wheelchair and by then mom was there and I was put out in the waiting room.

We ended up waiting for quite a while (not uncommon even coming in via ambulance, still have to be triaged as someone walking in could still be sicker). Finally, we saw the doctor. I explained everything that happened that morning and over the last few days since the accident and about the accident itself and about everything that happened with my tooth and also about my history of depression, anxiety, and panic attacks. He diagnosed me with PTSD (Post-Traumatic Stress Disorder) and gave me a prescription for Ativan for 10 days and suggested I see a counselor and that I follow up with my family doctor as soon as possible.

He also figured I would benefit from being put back on some medication for depression and anxiety but thought it would be more beneficial for my family doctor who knows my history and what drugs have worked in the past to be the one who prescribed them. He gave me a note for that day and the next but suggested I take more time off work and to talk to my family doctor about how long, but said he did not think I should be driving right now or working at the moment either. He was concerned about how I would be able to handle difficult customers, difficult situations and the impact it would have on my mental health at the moment.

While waiting to see the doctor at the ER my mom called my family doctor’s office in Halifax as she had to go up there yesterday to see a doctor in the same office for something so she wanted to see if she could get me in and bring me up. He just happened to be on call yesterday and she was told to call back in the morning. So we headed up to Halifax yesterday morning. She gave me a half of one of her Ativan as we had not filed the prescription for mine yet and wanted to talk to my doctor first. The way up was hard. I really had a hard time but Dad came with us as well and was in the back seat of the truck and they did their best to distract me and we stopped a lot so I could get out and move around.

My doctor also agreed that I was suffering from what he called a post-traumatic adjustment disorder which appears to be similar but not quite the same. He also suggested seeing a psychologist and also agreed that I should not be working at the moment due to the stress and my overall mental health from not just the accident but all the stuff leading up to it such as my uncle’s death in October, the tooth extraction which as he said in itself for me is super traumatic as I have a phobia of dentists and dental procedures and when I was forced to go due to the crown falling out and then having such a horrible extraction and then the experiences after it with the dry socket, infections, swelling and nerve injury and then the car accident and my fear of driving and getting into moving vehicles.

He really figured I should get a grip on it before going back to work. He also said the same thing as the other doctor about how I would react to stress at work such as issues with a client or difficult situations and thinks that I should be off until at least after Christmas to give myself some time to get situated with counseling and seeing a psychologist. He did not prescribe me anything which was something I was really hoping he was. I really feel I need something to help cope. Something to help with the depression and anxiety and maybe even help inadvertently with the pain from fibromyalgia as a lot of the same medications are prescribed.

However, he said that he felt and that it has been proven that medications don’t usually help for these “situational” depressions, anxieties and panic attacks. He didn’t really seem to take into consideration my history at all. Which is of Depression, anxiety and panic disorder both as well as Agoraphobia which I managed to overcome years ago and have had no issues with. He suggested as well that I get into physio and get assessed for my injuries from the accident as I was really sore and tender and he thought I had some soft tissue injuries that needed to be addressed.

I will admit I have had no outright suicidal thoughts. Nothing serious as thinking about doing it or how to do it, etc. I have however had some pretty dark thoughts about worst-case scenarios of what could have happened with the accident, which I am sure would happen to a lot of people. I have even caught myself wishing at times that I had died or at the very least sometimes I just wish I could disappear and not have to worry about anything. Does that mean I wish myself dead? I don’t really know. I think more just that I was thinking along the lines of just not having to deal with all this and not having to worry about anything more so than dying or killing myself.

It concerns me some but I have talked to my doctor, who honestly just brushed over it as being situational and my parents who are more concerned and my husband who is more concerned as well. I am not suicidal. I would not do anything. I would never put them through that. I am however concerned about my mental health and I am in a bit of a dark place right now…

A little update

Image Credit: StockSnap from Pixabay
Anyone who read my last post knows I hit a deer on Saturday in our new car. I have already been off for a month due to the infection I had after the tooth extraction and then missed three more days due to the accident.  These last three days I have mostly slept. The night of the accident the doctor on call at the ER gave me prescriptions for morphine, cyclobenzaprine, and naproxen. Needless to say, I have mostly been sleeping or nodding off.

Sunday I was still in a lot of pain despite the medication and my abdomen really hurt. I wasn’t sure if it was pulled muscles or from the seatbelt or what it was but it was getting worse so my mom convinced me to go back to the ER. She took me and the doctor on was concerned I might have a small bleed in my abdomen called a mesenteric bleed. Turns out that there was nothing serious but some bruising. He believes I had injuries both from the seatbelt and steering wheel but nothing that wouldn’t resolve on its own.

Yesterday we picked up our rental car, a 2019 Chevy Cruze hatchback which is remarkably similar to our 2019 Hyundai Elantra GT hatchback which is now in the shop. After that, I came home took some pills and just laid on the couch all day and evening watching TV and working on this theme. The other one was cute but just not me. This one is much more me and I am really happy with it. I am pretty sure that I do have a cracked rib or two. It hurts when I sneeze or cough or when I try to bend down or move around too much.

Today I went to get blood work done as the contrast they gave me for the CT Scan Sunday can apparently cause lactic acidosis in diabetics on metformin so I had to stop my metformin and can’t start it again until I get the results of the test and find out there are issues. When I go there they could not find the requisition my doctor’s office sent so I had to call them and get them to resend. Tomorrow sometime I have to call and see if they have the results before I start the metformin again.

Monday took the pills every 8 hours (4 for the morphine) and yesterday I took them a bit less. Today I have not taken anything at all since I have to work tomorrow and won’t be able to take them due to having to drive so I wanted to get a good gauge of where my pain is. It’s moderate. I hurt a lot when I get up and move around. Tomorrow should be interesting but in order to continue my short term claim, I would need to go back to my family doctor in Halifax which is a 2.5-hour drive each way which I don’t know if I could handle right now to get him to fill out the forms for me to submit.

At this point, I just don’t want to deal with it anymore and just want to get back to normal as much as possible and get on with my life. I am really tired of this kind of thing and just wish I could put it all behind me and not have to deal with accidents and illnesses as much.