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.

What do I want to do with my life?

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Image Credit: Mudassar Iqbal from Pixabay

A lot has happened in the last month. I have not felt much like posting or doing anything really. I have been really struggling with a lot of stuff. The good news is we have our car back we got it just before Christmas. I am driving again and doing well with it and starting to enjoy it again. I am pretty much back to where I was pre-accident during the day when driving. At night however is still a whole other story. I driven quite a bit at night to pick Edward up but I am so nervous. I figure though that I just need to do it and eventually I will gain that confidence back. I am doing well in that respect.

As for the anxiety and depression I was put on Cymbalta and it is helping. I am now at 60mg and the side effects are low and tolerable. Mostly dry mouth. I am not sleeping at all but wasn’t before starting it so it’s not from the Cymbalta. I am really struggling with being restless at night and being in pain and uncomfortable. I started physio as I mentioned in a previous post but only got to do a few sessions. I had applied again for short-term on the advise of my employer and my doctor but was denied. Short-term in denying me did suggest a gradual return to work so they set that up.

It did not go very well, quite horrible actually. I was actually excited and happy to go back but a little scared on how I would handle it but either way I showed up at about 12:30 for my 1 pm shift. Used the washroom and then was in the lunch room when the branch’s assistant manager (there is no branch manager at that location just an assistant as it is so small) requested I come into her office to talk about my return. I went in and the community manager was sitting there as well.

I am not going to go into great detail but essentially I am now unemployed I was really upset. They bullied me into quitting. They ganged up on me and made me feel really uncomfortable, made me upset and made me cry and start to panic and then when they had me right where they wanted me they pressured me into quitting. They essentially made me feel that if I did not quit they would fire me and advised me of the consequences of that happening (ie. no way to claim EI, looks bad on me, etc.) and eventually after a humiliating and very uncomfortable conversation I really felt I had no other option. So I eventually agreed.

Initially I refused to quit but they just kept at me and telling me that it was for my own good and that I was not fit to come back yet and since I was not approved for short term I had to make a decision on how I wanted it to go. Without outright saying it they made it very clear I was not staying and not going to be starting work. What else was I supposed to do?

I drove home in a snow storm in tears on the phone with my husband while he tried to calm me down. I was so upset. After talking further to him and telling him what was said, the atmosphere, etc and then talking to my parents as well they all suggested that it was discrimination and that they did not want to deal with me because they did not want to deal with panic attacks, depression, etc. They convinced me to contact the labour board. I did but because I had not yet been there 12 months they could not do anything but they did suggest I contact the Canadian Human Rights Commission so I did.

The woman at the Canadian Human Rights Commission listed to me and agreed that I had a valid complaint and that it was something they could help with and directed me to file a complaint online which I did. I received an email saying that they were taking it to the next step and starting to officially review it.

You may be wondering about the title of this blog post and the image. Well, this has opened up a lot of things. Being the end of January there are literally very few jobs at the moment. I have applied for EI and provided them all the details in hopes they will approve me until I am able to find a job. I have applied to a bunch but was really unsure what I really wanted to do. I am kind of soured towards banking now and don’t want to work for another bank.

I want a change of scenery and honestly I want to go back to school. That opened up the question “What do I want to do with my life?” and what kinds of things can I do around here that pay decent. I am not looking for a high 5 figure income that would be unlikely here. I am looking to find something I will really enjoy and make a difference in peoples lives. One thing I always come back to is I want to work with children and I have a special spot for children with disabilities because of my brother.

I am really hoping to be able to go back to school and take something that will get me working with kids with disabilities both physical and/or mental. I am willing to take whatever job in the meantime will help support us while I do that. I am going to apply to a college or university (still looking into programs) for the fall and apply for a student loan. I have no idea if I can get one but I am going to try.

Counselling & Other Things

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Image Credit: Mohamed Hassan from Pixabay

I finally got a call today from Mental Health Services and the Digby Hospital today. It seems that there is a free wellness clinic on Thursdays at the hospital from 9 – 3. She said all I have to do is show up and register at the registration desk and then I can see a counselor who will do an intake and determine where to go from there. I am unsure how it works but I am glad that at least there is somewhere to start. She said they can determine if some counselling sessions are needed and how often or if I need to be referred to someone else from there. It’s a bit of a relief. I was getting really frustrated and upset about it and feeling like I really needed to talk to someone.

With that and going to physiotherapy tomorrow to be assessed and get some help for the pain that is still there after the accident at least I am now starting to feel like I am getting somewhere. I was told by her today that to see a psychiatrist through mental health is a 3-5 month or longer wait. I go back to work after Christmas and still have not driven at all. I don’t even miss it. Usually, after a day or two of not driving, I am itching to get behind the wheel and go somewhere. At this point, I wouldn’t even get in a car if I didn’t have to and if I even think about driving I start to shake.

I made a bit of a mistake earlier though, my Libre sensor finished yesterday while Eddie was at work and he brought me home two sensors and I should have put one on last night but I didn’t feel like it. This morning I wanted to get a shower and had to wait a bit to ensure my skin was not wet before putting it on or it will just start peeling off. He had left for work already and before leaving we were talking a bit about everything and I still had not got the call I just mentioned yet from mental health and after he left I started feeling shaky and felt like a panic attack was coming on. By this time it was about 3 PM and I had not eaten since breakfast but I failed to notice that at first.

I tried to calm myself down and was talking to him on messenger and told him what was going on (he was on the bus to work) and he tried to calm me down but I just kept feeling shaky and then weak. Thankfully at some point, it occurred to me that maybe this one time it was not a panic attack and was maybe low sugar. I looked for my glucose monitor, test strips and lancet and could not find the case with them in it so I said the hell with it and went and got some glucose tabs and took them then made myself an English muffin.

After about 10 -15 minutes I started feeling less shaky. I put on a new sensor and activated it and waited the hour and sure enough, I was 5.7 which in the grand scheme of things is not low, in fact, it’s perfect but knowing that for the last month and a half (even before the accident) I have been in the teens and ’20s for the most part and after testing it a few times and seeing it curve upwards I know it was likely much lower then that about an hour and twenty or thirty minutes before. Which would have been before I ate and before I had taken anything to try and bring my sugar up.

I honestly don’t know how low I went but it must have been pretty low for me to get shaky because I don’t always get shaky sometimes I don’t know until I pass out. I am damn lucky I figured it out. I still feel pretty weak and now I have a headache on top of it. So, now I have the added anxiety of not being able to tell a panic attack from low blood sugar. Which terrifies the absolute hell out of me. I have to be more careful and I have to ensure I am checking and double-checking (with test strips) my blood sugar right now.

One other thing that’s been bothering me is wondering if some of the pain and fatigue I am feeling after the car accident is maybe because it has triggered a flare with my Fibromyalgia. I have probably mentioned that before and I know I have thought about that since the accident, especially this last week. Even earlier though this morning right after getting a shower I put my pajama’s on like yesterday to dry my hair with the intention of getting changed after and instead I dried my hair and then I fell asleep for an hour on the couch after sleeping about 10 hours the night before. I am so tired. No matter how much sleep I get I just don’t feel rested and each day seems to be adding to the previous day. Each day I am feeling more and more tired and weaker.

I am hoping maybe the physiotherapist might have some ideas or maybe one I tell them everything they might be able to shed some light on it. I feel like if I go back to my family doctor now he is just going to blame it on the accident or the fibromyalgia and not really do anything about it. If there even is anything that can be done. I just hope physio tomorrow does not make me feel worse and not better. I am not sure I can handle feeling much worse then I do now and I feel like one thing is feeding off another.