Note To Self

Don’t play with your WordPress theme at 2 a.m. because you can’t sleep. You are bound to mess it up, or worse yet, accidentally delete it altogether. I guess it’s about time I started from scratch anyway. For now I am going to have to find something to use until the weekend…

COVID-19 Testing

After weeks of being sick and getting steadily worse and worse, I was finally able to get tested for COVID-19 as a part of the community spread options they had. My symptoms fit what a lot of people recovering were saying. The testing itself was not as bad as I thought it would be. I looked it up and it showed them shoving essentially a q-tip up your nose as far as the back of your throat. I had had a test a few years ago for whooping cough and I remember that as being pretty unpleasant and because of the sinus issues I have been having I was really dreading the test but it was not bad at all.

After getting ahold of my family doctor via phone and him prescribing antibiotics again I was a little hesitant to take them as I had taken so much of them at the end of last year (almost 3 months on them) and so I talked to my pharmacist on the phone and he suggested that the symptoms met the criteria for COVID-19 and suggested I call 811 (our telehealth network) so I did and they agreed that the symptoms and timeline fit and that I should be tested. I got the call the next day to go to the hospital in Digby and get tested.

They asked that anyone being tested wear a mask of some kind or have a cloth or facecloth with them to put over their mouth and nose, we had some new dusk masks that had never been opened so I used one of them. You can not get N95 masks here anywhere, I am assuming that is the same for most places. Once I got there they had me hold my health card up to the glass while the receptionist took down my info so they didn’t have to touch anything and they were behind a glass, then I took a seat.

Every second seat was blocked off with tape and a sign saying not to sit there, I am assuming the ER is like that as well in the waiting room upstairs. They had it in a completely separate area of the hospital with its own separate entrance. I was surprised it was even in Digby actually because last I heard people from our area had to drive to Yarmouth or Kentville depending on where they sent them. The nurse came out and brought me into the room. She told me most people didn’t tolerate the test well and complained it hurt or even had nosebleeds after. I had neither pain or a nosebleed and since I had had a few nosebleeds over the few days before I was a bit surprised, but she did not seem to go back very far, did both sides and also did the back of my throat separately.

It took 48 hours or so to get the results back and thankfully for me they were negative so I am able to go back to what everyone else has to do and just do social distancing and all the other precautions because for a few days Eddie and I both had to remain 100% in quarantine until we got the results back (from the day I had the test until the day I had the results, previously I had been told that I did not have to quarantine fully because it was just a cold and couldn’t be COVID-19 as there was no community spread.

I isolated myself as much as possible before I was told to quarantine anyways though and was not coming into contact with anyone but Eddie as much to protect others as myself in as I did not want to give someone a bad cold or flu at a time when it would make them more vulnerable to something like this (I wasn’t sure what it was but now I believe it was a combo of a cold, sinus infection and maybe even a bit of a respiratory infection unrelated to COVID-19).

When I got the call with the results the public health nurse who was a nurse practitioner agreed with my doctor that as it had been so long and with the inability to get x-rays right now unless admitted that I should take the antibiotics so here I am again on another round of antibiotics but at least I do not have COVID-19. That being said I was told to watch my symptoms and call back if it seemed like it went away completely and then came back again as it might then actually be COVID-19. So for that reason, Eddie and I decided he would continue not working and take two weeks off from the first day so that I can get better in hopes that if he does work and end up bringing it home I would have a better chance of fighting it since I would not already have a respiratory illness which with diabetes and asthma.

I know asthma does not mean I have a compromised immune system but diabetes can make me more susceptible to viral and bacterial infections. Fibromyalgia according to many sources, including my doctor does not affect your immune system and does not make you more susceptible or compromise your immune system in any way. Other sources say it does. Honestly, I have no idea what to believe I just know I get colds, flu, and infections easily whether they are viral or bacterial but with the diagnosis of diabetes maybe that makes more sense? I am not sure. If there are other underlying health issues there that I don’t know about then I suppose they could be an issue as well.

Either way. I don’t have COVID-19 at this moment in time so that’s what I need to concentrate on and be thankful for that as I was concerned about the pre-symptom days and the people I came into contact with, and their safety. At least that is not an issue.

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.