Who is Edith?

I have mentioned my parent’s house before in my blog. The picture above is a house similar to theirs only theirs has been added onto on the right-hand side of the house (if you’re facing the house) in a couple of sections. The house was built sometime in the 1840s-1860s, we don’t know the exact date. It’s beautiful and old. I have also mentioned before about it being haunted by a woman who at the time we were told was named Ethel (or Edna, poor ghosts been called all kinds of things). I want to tell you a bit more about the haunting(s) and some stories about things that have happened in the house since they moved in. I believe I might have mentioned in a previous post about one of the earlier things that happened, however, I can’t remember if I have so if this is not new, I’m sorry

My parents moved into the house knowing it was supposedly haunted. For the first few weeks, they didn’t sense, hear, or see anything at all, and neither did we when we visited or stayed over. Within a few weeks though, they started hearing some footsteps upstairs. Nothing too alarming just steps when they knew there was no one up there, knowing the history of the experiences past owners had of the house they didn’t think a whole lot about it.

Within the first few months of living in the house, something rather spectacular happened, depending on how you look at it. My parents were asleep in the house one night when my Mom was woken up by knocking on the wall above her bed. She described it to me later as three knocks in a row, followed by quiet and then repeated. This went on for a little while becoming more insistent over time. Knowing the stories about the house Mom said somewhat jokingly “Ethel, what in the hell do you want?” After that, she said the knocking stopped for a bit. The master bedroom basically covers the whole left side of the top floor when looking at the house from the front. Their bed was against the back wall of the house at that time and the knocking started over her head, but she said it sounded like it was coming from the outside of the house. Well, that would be on the second floor.

It continued and started to move around the side of the house onto the left side of the bedroom, so Mom woke my dad and he listened and said he heard it too. Being skeptic he assumed someone was outside trying to steal something and the sound was echoing up to them. He woke up my younger brother who lives at home and they went outside and looked around, not finding anything at all. They headed back into the house and back to bed. As Dad was falling back to sleep they heard the knocking again, they talked a bit trying to ignore it but it was still quite insistent. Dad grudgingly got back up, got my brother again who said he could also hear it, it was echoing. They headed back outside again to look around and on the side of the house, they found the electricity wires going into the box on the side of the house on fire and sparking and the siding starting to melt.

My brother took off running into the house, called 911 asking them to send the fire department, yelled for my Mom to get dressed fast and get downstairs while my Dad grabbed a ladder. The fire department showed up in a few minutes as they were just down the road about a kilometer and a half, they put out the fire, turned off the electricity and told my parents to call Nova Scotia Power and an electrician before it could be turned back on. One of the firefighters asked my parents how in the middle of the night while asleep did they manage to wake up and find it and my parents said: “You wouldn’t believe us if we told you”.

The next day they moved into the house we are in now temporarily which they own and they called me and told me and my husband what happened, all of it including the knocks, the fire, everything Mom was convinced they were being warned of danger. Even my Dad seemed to think that “Ethel” the ghost was trying to warn them of what was about to happen and trying to get them to save her house and to save themselves and I have to say, I agree. After that, even Dad seemed to enjoy their housemate and talk to her when he thought she might be listening. They thanked her and things quieted down for a time. During this time they were told by the previous owner that her name was Edith not Ethel. Mom never really questioned if this was a name they were told by someone or if it was a name they gave her but we both really feel that it’s the correct name. Odd as that sounds.

More recently my parents have been experiencing things again at the house. I have also had a few experiences as well before we started social distancing. Things had settled down between then and recently however, they still heard footprints, had the feeling they weren’t alone but never felt uneasy during the time in between. Instead, they said they felt welcome and felt that there was someone watching over them and the house and felt peaceful and comfortable in the house. They have never felt anything menacing or felt overly uneasy beyond the idea of sharing the house with someone who left the world years ago. In fact, Mom said numerous times she would wake up to a warm feeling after feeling cold and more than once woke up to watch a blanket being pulled up after falling off her by an invisible hand and feeling comforted by it.

So over the last few months, my Dad has been having issues with his legs due to a slipped disk causing issues with going up and down the stairs which are steep and narrow. The upstairs landing has a small alcove, if you look at the image above which is similar to their house it would be where the window is upstairs on the front, so the stairs and landing or hall area or whatever you call it are in the middle of that section of the house and there is a low railing all along with the stair opening so you don’t fall down. The flooring is tilted toward the railing and it gives you the feeling of being in a funhouse in a fair or theme park. It’s a bit unsettling and combined with the stairs makes it unsafe for Dad to go up and down right now so they have been sleeping on the couches downstairs (which are thankfully recliners) in the living room under the master bedroom on the bottom floor. This is significant for the next part of the story I am going to tell you because if they were upstairs I don’t think they would be experiencing it.

Since sleeping downstairs Mom said she has been seeing a light shining in the window waking her up early every morning before the sun was even coming up. She described the light to me as a lantern light when she finally told me about it. It actually took her a few months to tell me. It’s been months of it every morning at the same exact time. At first, she was scared and woke my Dad up and he saw it numerous times as well and says the same thing, that it’s a flickering lantern-like light. Thinking someone was trying to break in and they scared them off they went back to sleep. After a few times of this happening, they started to realize it was the same time every morning at exactly 4 a.m. and they started feeling less afraid and more intrigued. They never told me though, not at that point. It was a few months before they finally told me about it. It’s still happening to this day but they are no longer afraid.

Before they actually started experiencing the light in the window I actually experienced something that was outside the window on the lawn when I was in the kitchen downstairs, which I never told them about as I thought my Dad was uneasy about everything and because my brother gets really freaked out by some of it, so I kept it to myself. Over Christmas Edward and I stayed a few nights. The night before Christmas Eve I woke up in the middle of the night to use the washroom. I don’t like the one upstairs, it’s small, claustrophobic and I have to walk the part of the landing area I don’t particularly like to walk on so I usually go downstairs to the one down there.

I went down the stairs, across the kitchen, and turned the kitchen light on. The bathroom downstairs is off the kitchen which is on the right side of the house under my brother’s bedroom and the spare bedroom we sleep in when we stay there for the night. It’s in one of the add-on parts to the right of the main original part of the house and so I used the washroom, left, turned the kitchen light off, and turned towards the front window in the kitchen and out on the lawn out front was a floating light. It looked like a lantern, I say this because it was more yellow then white which a newer led flashlight would be, it was flickering like a flame but also bouncing up and down while basically going across the lawn.

I never really thought much of it and just sort of shrugged it off. No one else at that point was mentioning having any experiences other than the footsteps, which I had heard as well, but stuff like that never bothered me as I experienced it before when we lived in Germany and also when we lived in my grandparent’s house on Digby Neck when I was in high school. I’ll tell that story and some other ones another day. On the property behind the house there is a path down through the backyard, then woods, then a field and down to the beach. I think they mentioned it’s a little over a kilometer. Over the summer camping there I found the woods sometimes I felt like I was being watched but again I never really felt more than slightly uncomfortable. I still felt and I think we all feel that whatever presence is protective extends out there even if the actual spirit can’t.

It wasn’t until about 2 weeks ago when Mom and I were having a conversation that she finally told me. The day before she told me about a dream she had one night a few weeks ago. I don’t remember the exact conversation but in the dream, there was a poem and when she woke up she felt she needed to write it down, so she did:

RAY OF LIGHT

He came to me on a ray of light
He came to chat in the middle of the night
He came to say God needs me home
Where God needs me I will roam

He took me home on his wings of white
All the way on that ray of light
To see my family again at last
All of them who have previously passed

Mom and Dad were there
And my brothers too
With open arms
That said we all missed you

Smiles and hugs all around
Love and joy did abound
God said you have family here
But your earthly family also cares

If you feel they need you still
It can be arranged with your free will
I had the choice to stay or go
My earthly family still needs me so

I still had things to do down there
Before my time on earth was done
He said the choice was mine to make
All the time I needed I could take

I hugged my family and said goodbye
My time left on earth would surely fly
He took me back through the ray of light
To my earthly home on his wings of white

To finish what I started there
And for my earthly family to prepare
For my journey on earth would soon be done
And I would then be in my heavenly home

At first, the night she sent me the poem I was concerned about her. I thought it was about her as she has two brothers in heaven but no sisters. Her sisters are alive and both her parents have passed on (third paragraph). I don’t know what I thought but it didn’t sit right with me at the time. Then the next day she told me about what was happening at 4 a.m. and what she thought it meant and that Dad agreed with her and that they both believe that the poem was not about Mom, that it was about her, about Edith. I’ll go into that a bit more near the end.

They believe that the person or spirit outside the house is likely the husband of the woman inside the house and is looking for her and that they either don’t know each other is there or that they can see each other but can’t interact for some reason or something similar. They have the feeling they both want to. It kind of fits with stories we have heard from the previous owners about a Sea Captain and his wife. That his wife passed away while he was out to sea and she was put in a shed waiting for him and for the ground to thaw out as it was winter. A common practice in the Maritimes at the time they would have been alive.

Mom did some research on a genweb website for the area and found some couples who she believes lived in the house or on the property around the time the house was built and one of the women was named Edith, her husband William. I was able to pull up quite a bit of information on the couple with Ancestry.ca and Ancestry.com as well as some other sites including the dates they were born, their parent’s names, and addresses. His parents actually correspond with the right timeframe the house would have been built and are listed as living at what would be the address now. Her parents were from the next community over and she was born there and married him in their early 20s in a church close by. After that though, it doesn’t quite seem to fit as they moved to Massachusetts.

She died in Massachusetts in her late 40’s leaving behind 2 young kids. He didn’t die until his 80s also in Massachusetts. There is no record of where she was buried even though there are records for him and both children as well as a baby they lost in between the two children, all buried in Massachusetts except her, or at least as I said there is no record of her being buried there that I can find. Somehow it makes Mom and I both wonder if she was sent back to Nova Scotia for some reason for burial. William’s brother got the property we believe is Mom and Dad’s house. We are wondering if she was sent to be buried on the land or maybe her parent’s land or a cemetery here. I plan to go looking when we finally can get out.

I don’t know why but I really think we are onto something but at the same time, there are a lot of things that don’t quite fit. Mom feels the same. As mom said she felt the poem was about Edith, in fact she said she feels Edith gave her the poem. I didn’t mention it above but after Mom told me she wrote it, that it was not a poem someone else wrote but that she wrote based on the dream I literally looked the poem up line by line on google trying to find it, trying to find proof that someone else wrote it. I couldn’t find anything at all. It appears she did write it, or Edith did. Of everything, it’s the one thing that really unsettles me. It’s a beautiful poem but at the same time, I did not want it to be about Mom or Edith, who at this point feels like family, and interestingly enough we did find out that the Edith we researched is related. So maybe there is something in that?

 

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.

How fibromyalgia affects other illnesses and injuries

Image Credit: Vargazs from Pixabay.

Fibromyalgia & Oseoarthritis

One thing I have noticed over the years since being diagnosed in my early 20’s with fibromyalgia is that it tends to intensify everything else that is going on. Whether it is a psych issue such as anxiety or depression, a physical issue such as osteoarthritis or a disease such as type 2 diabetes, fibromyalgia seems to make dealing with them so much harder. I have learned a lot over the years about my chronic illnesses but there are times when they still take me by surprise and times when I wish things could go back to the days before any of this started affecting me. If there ever really was such days. Honestly, I can’t really remember a time that I didn’t get sick easily or injured easily. Even as a child I had strep throat and ear infections constantly. I caught everything going around from rubella as a baby to chickenpox to scarlet fever mumps, measles, and hand, foot, and mouth among others. I’m surprised I didn’t have the plague to be absolutely honest.

I am very prone to injury. I am not sure if this is just because I am clumsy or if it is more related to the fact that people with fibromyalgia seem to be more prone to falls. One study mentioned on WebMD suggests that this is because people with fibromyalgia tend to have balance issues. We apparently score worse on balance tests than people who don’t have fibromyalgia. It also mentions that the number of medications had no relationship with the scores but as we take more medications typically it can’t be ruled out. Not sure how they came up with that one…

In the early years of my diagnosis, my balance seemed to be pretty good. I really didn’t have many issues. Over the years, however, my balance has really declined. I started suffering about 10 years ago with severe bouts of vertigo that would render me immobile. This seems to come and go. Remittent and recurring it seems.

When I am injured either due to a fall or impact or something else I tend to heal a lot slower them most healthy people. Even long before the type 2 diabetes diagnosis, this has been something I have noticed a lot I seem to take two to three times as long as most people I know who are relatively healthy. Sometimes I even start to get better and then easily re-injure myself or if it’s an illness then I seem to get better only to then start getting worse, sometimes even worse than the first time.

Image Credit: Kirsten Corbett

This was the case with my leg the summer before last. One fall caused me to injure my knee and ankle and it took forever to heal. When I was finally starting to feel better I fell again and the second time through the fall was less of an impact (falling in the tub vs a fall downstairs) I was hurt even worse. Then the time I spent on crutches causes a shoulder and wrist injury that took forever to heal and I ended up having to forgo the crutches for a rented wheelchair for over a month. I’m actually still not fully healed. I still have tons of pain from all the injuries almost a year and a half ago. I was diagnosed with Osteoarthritis in my left hip and knee during all this and was sent to a specialist.

It would take both my fingers and toes to count the number of sprains, strains, pulls, tears and even breaks I have had over the years. Even when I was a child actually. They put it down to be being clumsy but honestly looking back I really wasn’t. I have always been careful and paid attention and gone slow. I was never one to rush anything just ask my husband and parents

 

Dermatographia & Rosacea

Image Credit: WikiMedia

I also have two skin conditions known as dermatographia and rosacea. Both are quite common in people with fibromyalgia, comorbid conditions (oddly enough they are not listed in that list) that are often present in people with fibromyalgia. Rosacea primarily affects the face but can affect your chest and neck as well. It causes inflammation and swelling on the cheeks, nose, and forehead. The skin typically looks red and inflamed. Facial flushing is common with rosacea as well as a bumpy look. One of the main causes for me is stress or just being overtired or sick. Any sort of stress causes a flare. With rosacea itself, I do not experience and pain or itchiness typically.

Then there is the second condition dermatographia aka skin writing. This comes and goes for me as well in flares and is usually worse when sick, overtired or stressed. This one causes me a lot of annoyance. My skin is always itchy and dry no matter how much I moisturize it or what moisturizer I use. Most moisturizers actually aggravate it. Anything with feverfew is a no go for me. Typically suggested for rosacea it just makes me miserable. I found this out with Aveeno Ultra Calming lotion. It made my skin crawl for days after using just a little. I was tested for an allergy to it and I do not have one. My dermatologist at the time thought it might be from the dermatographia but was not really sure.

I can skin write. Sometimes very plainly and easily but I don’t because it really makes my symptoms worse and makes me miserable so anytime anyone who finds out I have it asks I refuse to show them typically. It just makes me so uncomfortable and itchy. My diagnosis with it was a weird one: about 3 years ago Eddie and I were trying to get pregnant and as part of the blood work etc, I was diagnosed officially (finally) with type 2 diabetes. During this time they decided it would be best for me to start on insulin right away.

I was put on the fast-acting insulin Humalog. I had a 15-minute appointment with a nurse who showed me how to inject the insulin in my stomach and was provided with a Novopen 3, a box of BD ultrafine pen needles and a script for Humalog and one for test strips. This was my pre-Freestyle Libre days. I was also given a 15 minute consultation with a nutritionist who said I should avoid eating sugar and sugary foods and eat some vegetables (no shit sherlock) and proceeded to provide me with a couple of recipies by email with turned out to be smoothies with a ton of sugar and some sort of protein pancake recipe which my best friend (who is a nutritionist) said was full of carbs and not so good for me.

Once home I started injecting myself at the next meal. Very little info was given on how to bolus for carbs etc. It was just “make your meals each a set number of carbs and use this much insulin at each meal” kind thing. I struggled with it. After about a week I noticed big welts each time I injected. I thought I was doing something wrong. Called them up went back was told I was likely not sticking the needle in far enough (I was, it was a 4mm needle and it was flush with my skin) and told to go to a 5mm needle. So I bought a new box. This did not help.

After injecting my skin around it would become really itchy, inflamed and welted. My dad injects insulin and said this should not be happening. Ocassionally yes if I actually did not get it in all the way and the insulin was too close to the surface but not each and every time. He watched me inject, gave me pointers and still it persisted.

They switched me about 4 times to different types of fast-acting insulin but it still happened. It sometimes would stick around long enough that the next time I would still have an old one. I took pictures and posted them on a facebook group for diabetics and was told no, this should not happen. So off to an allergist I went. She did allergy testing and said I was not allergic to insulin. Instead, she diagnosed me with dermatographia. I could always skin write but had no idea it was a “condition” or not normal.

Type 2 Diabetes & Neuropathy

Image Credit: Kirsten Corbett

As mentioned above I was diagnosed in 2016 with type 2 diabetes and later with associated neuropathy in my hands and feet. Obviously this is a totally unrelated disease but sometimes the two seem to feed off each other for me. Especially the neuropathy. Fibromyalgia seems to make it so much harder to bear at times as I am so sensitive to pain, especially nerve-related pain.

Diabetes itself is not really made worse by fibromyalgia. Fibromyalgia in itself will not cause or make my sugars any higher. That’s mostly diet, lack of exercise and the fact that my body either does not produce enough insulin or can not use the insulin it does produce effectively. One really has nothing to do with the other.

My body must have had issues now for a while though utilizing or producing insulin though because I have been diagnosed with diabetic neuropathy rather early in my diabetes diagnosis. It was only about 8 months before my diagnosis that my doctor suggesting I might be pre-diabetic.

Diabetic neuropathy is caused by high blood sugar injuring your nerves. It can cause a burning sensation (pain) and numbness (tingling) in your hands, legs, and feet. It can cause issues with your digestive tract and urinary tract and issues with your blood vessels and heart.

I have both peripheral neuropathy and autonomic neuropathy. Peripheral neuropathy is what causes the burning sensations, numbness or tingling, loss of sensation, reduced ability to feel pain or temperature changes, muscle weakness, and sharp pains or cramps. loss of reflexes, balance and coordination, ulcers and other serious foot problems and infections. Mine is mild to moderate.

The autonomic nervous system is what controls your stomach and intestines, your heart, bladder, your sex organs, and your eyes. Autonomic neuropathy is when diabetes affects the nerves in these areas. The main symptom for me with this is a lack of awareness when my blood sugar goes low called hypoglycemia unawareness, something else I have been diagnosed with. For some reason, I find fibromyalgia really seems to play havoc with this. Instead of just not knowing when I am low I seem to get false symptoms, high symptoms when I am low and low when I am high, etc. I have no idea what the reasoning behind this is and I can find little to no information on it. However, when I am in a fibro flare this always seems to be much worse.

One of the things I am really looking forward to and really hoping my insurance will cover is the Freestyle Libre 2. Which has added Bluetooth and alarms that push to your phone or reader when you go below a certain blood sugar level. While not a full CGM like Dexcom because you still have to “scan” to get your actual glucose level it will at least alarm you when you are going low so that you can head off an extreme low. This will help with someone like me who doesn’t feel when they are going low or for peace of mind when your diabetic child is sleeping at night and goes low.

My insurance will not cover a Dexcom continuous glucose monitor unless you are type 1. Which I think is antiquated as for one, studies have shown there is actually 5 types of diabetes, something that is becoming widely more accepted.

This sums it up pretty well (source: LiveScience):

  • Cluster 1: Called “severe autoimmune diabetes,” this form is similar to type 1 diabetes. People in this cluster were relatively young when they were diagnosed, and they were not overweight. They had an immune system (autoimmune) disease that prevented them from producing inulin.
  • Cluster 2: Called “severe insulin-deficient diabetes,” this form was similar to cluster 1 — people were relatively young at diagnosis and were not overweight. They were also not producing much insulin. But, crucially, their immune system was not the cause of their disease. People in this cluster “looked for all the world like [they had] type 1” diabetes, but they didn’t have “autoantibodies” that indicate type 1, Wyne said. Researchers aren’t sure why this happens, but people in this group may have a deficiency in the cells that produce insulin.
  • Cluster 3: Called “severe insulin-resistant diabetes,” this form occurred in people who were overweight and had high insulin resistance, meaning their bodies were making insulin, but their cells were not responding to it.
  • Cluster 4: Called “mild obesity-related diabetes,” this form occurred in people who had a milder form of the disease, without as many metabolic problems as those in cluster 3, and they tended to be obese.
  • Cluster 5: Called “mild age-related diabetes,” this form was similar to cluster 4, but the people were older at their age of diagnosis. This was the most common form of diabetes, affecting about 40 percent of people in the study.

So I really hope that they will cover the Freestyle Libre 2 since they cover the original. If Health Canada ever approves it for sale in Canada. Anyway, end rant, so basically the neuropathies cause some major issues and combined with fibromyalgia as well it can be a bit of a nightmare. As with what I mentioned above about injuring my leg last year and then the whole thing with my Wisdom teeth and now what I have gone through the last month with a simple tooth extraction of a tooth with a failed root canal and infection, fibromyalgia can really exacerbate and make things that much worse.

Does it technically do this or does it just feel like it does? I really don’t know. All I know is tons of other people I have talked to with fibromyalgia agree that 1) they usually have multiple comorbid and not comorbid conditions along with it. It’s such a broad diagnosis anyways and 2) that they feel that it worsens their symptoms for other things such as depression and anxiety or other mental disorders as well as many other disorders, diseases, conditions, syndromes, etc.

If you made it to the end of this post I commend you and would offer you a lollipop but I don’t have any