My life lately
My black out spells are worse.....my rate is constantly above 100 anytime I am standing.....so that is my update.......on my life :)
I went to Yellowstone a week and a half ago, wasn't able to do much, Left early, did to much when I got home, and I have been sleeping a lot and at the weirdest times.... So I am in a bit of a funk, and trying to get back somewhat of a normalized schedule back.
I hate having a chronic illness, and people who don't even know my situation giving me a hard time about missing an appointment (a rude doctors secretary) should live in my shoes for a couple of days, and then maybe she wouldn't be so rude, and it is the doctor giving her a hard time and she is passing it onto the patients, then the doctor should live be given a chronic illness for a couple of days.....
YOU SHOULDN'T"T GIVE ANYONE A HARD TIME IF YOU DON'T KNOW WHAT THEY ARE GOING THROUGH FIRST!!!!!!!!!!!!!!
Tuesday, August 13, 2019
Let see if I can write all this down
I know this is littered with many errors....ugh my brain doesn't work well some days, but I would love anyone to correct the mistakes and give me insight on how I can make this more of a piece that can be understood. because my brain literally is doing this... I promise I won't be offended :)
I have had this dilemma brewing in my mind and I guess literately my body for a while now.
I really feel like if I would to just write it all down then maybe my brain will feel a little bit better and not so unorganized.
I guess I should start at the beginning, of where my brain started going crazy. I got a genetic report done, just for the fun of it to see where my ancestors are from. It was fun to see, but I also had the option to download my RAW DNA. I found this really cool site, that you can pretty much get all the data that is out there about DNA. It's a research based company. The health reports that are generated from ancestry sites usually get their data from this company. So I was able to pay only 5 dollars and get a 40 page genetic report. Wow, it was a lot to sift through, since it wasn't in a easy readable format, but that is ok, I figured most of it out.
It came back with a bunch of new things for me to research! It was great! That's half sarcasm :) I got a lot of things that were heterogeneous and did the research and determined that I didn't have those conditions, but towards the end of my digging, I came a crossed a term that I hadn't really hear of, called Elhers Danlos Syndome, or EDS. Now this wasn't a Heterogeneous or homozygous Gene for EDS it was a "this Gene is related to a ton of people who have EDS and we haven't quite figured out the connection". So I started researching this EDS.....and the Hyper mobility EDS was me to a T!
https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf
Just in case you were wondering, I added the picture above explaining a bit about when I filled out the document. It isn't that pretty, but I think it gets my point across.
This is the new criteria and I according to this I qualify at being diagnosed with EDS, but the one problem is that it seems the only doctor who will diagnose me is a geneticist, And there are only two in the state I live in and they both have year waiting lists. Even if I get in I am not sure how long it will take to get an actual diagnosis, maybe that day? but who knows.
My thinking is that I have always had EDS but it didn't effect me enough to get a diagnosis and it is super rare. And when doctors know that it is super rare, they just assume not to check for it.
So here I am doing research on this EDS when I notice that the lady who has ME/CFS (the condition I have also been diagnosed with) that made a very popular documentary, had a ton of updates on her story about what has happened after her documentary came out. She was contacted by an EDS doctor who had watched her documentary and was like "hey, that MRI of your brain was not actually normal"
https://medium.com/@jenbrea/cci-tethered-cord-series-e1e098b5edf
Here is the story, because I do a terrible job at reiterating it.
So next thing she knows, she is basically diagnosed with EDS and there are a lot of people with EDS that after a really bad viral bout get whats called Cranial Cervical Instability that caused them to have a whole slew of other symptoms including the very debilitating POTS! SO if you you have kept up on my story, you know that I was pretty dang healthy until I came down with the Epstein Barr virus about ten years ago. So my thinking, I have always had EDS, but led an active lifestyle and it didn't give me any big red flags to actually get diagnosed. I get hit with an incredibly stupid virus, and my life is never the same. I have been diagnosed with POTS, if you were wondering. I feel like I am just connecting the dots. One of those dots, are my face tingles and bouts of face paralysis, that is a sign of Cranial Cervical instability.
I am adding a lot of the resources I have found of my journey, this is from a PDF about connecting the dots on EDS, POTS, and CCI. The above picture is from one of the pages, I checked everything I had. I have pretty good vision, so of course I didn't check that.
https://www.ehlers-danlos.com/pdf/2018-EDS-Webinar-Chopra.pdf
This link above is where a great resource on all things EDS, CCI, and POTS. Its crazy as I am reading through the article I just keep shaking my head in agreement.
I could keep putting article after article in about why my brain is heading in this direction.
If you read the whole story of Jennifer Brea and you know me personally I am not nearly as bad as she got. I am not sure what my next steps are, I would love to get rid of my POTS, but it seems like it will be a long road to even see if I qualify to get my neck fused together ( if you don't understand how I jumped to neck fusion surgery, go back and read the first link I put in). and honestly I would rather go down any other avenue to see if I can find relief from my symptoms before having to go through what Jennifer Brea had to go through, to just see if she qualified for surgery....ugh talk able rods in neck, being woke up after rods are placed, get a bunch of test done on rods, then put back under anesthesia to take rods out.......just read her story and you will know what I am talking about.
I have had this dilemma brewing in my mind and I guess literately my body for a while now.
I really feel like if I would to just write it all down then maybe my brain will feel a little bit better and not so unorganized.
I guess I should start at the beginning, of where my brain started going crazy. I got a genetic report done, just for the fun of it to see where my ancestors are from. It was fun to see, but I also had the option to download my RAW DNA. I found this really cool site, that you can pretty much get all the data that is out there about DNA. It's a research based company. The health reports that are generated from ancestry sites usually get their data from this company. So I was able to pay only 5 dollars and get a 40 page genetic report. Wow, it was a lot to sift through, since it wasn't in a easy readable format, but that is ok, I figured most of it out.
It came back with a bunch of new things for me to research! It was great! That's half sarcasm :) I got a lot of things that were heterogeneous and did the research and determined that I didn't have those conditions, but towards the end of my digging, I came a crossed a term that I hadn't really hear of, called Elhers Danlos Syndome, or EDS. Now this wasn't a Heterogeneous or homozygous Gene for EDS it was a "this Gene is related to a ton of people who have EDS and we haven't quite figured out the connection". So I started researching this EDS.....and the Hyper mobility EDS was me to a T!
https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf
This is the new criteria and I according to this I qualify at being diagnosed with EDS, but the one problem is that it seems the only doctor who will diagnose me is a geneticist, And there are only two in the state I live in and they both have year waiting lists. Even if I get in I am not sure how long it will take to get an actual diagnosis, maybe that day? but who knows.
My thinking is that I have always had EDS but it didn't effect me enough to get a diagnosis and it is super rare. And when doctors know that it is super rare, they just assume not to check for it.
So here I am doing research on this EDS when I notice that the lady who has ME/CFS (the condition I have also been diagnosed with) that made a very popular documentary, had a ton of updates on her story about what has happened after her documentary came out. She was contacted by an EDS doctor who had watched her documentary and was like "hey, that MRI of your brain was not actually normal"
https://medium.com/@jenbrea/cci-tethered-cord-series-e1e098b5edf
Here is the story, because I do a terrible job at reiterating it.
So next thing she knows, she is basically diagnosed with EDS and there are a lot of people with EDS that after a really bad viral bout get whats called Cranial Cervical Instability that caused them to have a whole slew of other symptoms including the very debilitating POTS! SO if you you have kept up on my story, you know that I was pretty dang healthy until I came down with the Epstein Barr virus about ten years ago. So my thinking, I have always had EDS, but led an active lifestyle and it didn't give me any big red flags to actually get diagnosed. I get hit with an incredibly stupid virus, and my life is never the same. I have been diagnosed with POTS, if you were wondering. I feel like I am just connecting the dots. One of those dots, are my face tingles and bouts of face paralysis, that is a sign of Cranial Cervical instability.
https://www.ehlers-danlos.com/pdf/2018-EDS-Webinar-Chopra.pdf
This link above is where a great resource on all things EDS, CCI, and POTS. Its crazy as I am reading through the article I just keep shaking my head in agreement.
I could keep putting article after article in about why my brain is heading in this direction.
If you read the whole story of Jennifer Brea and you know me personally I am not nearly as bad as she got. I am not sure what my next steps are, I would love to get rid of my POTS, but it seems like it will be a long road to even see if I qualify to get my neck fused together ( if you don't understand how I jumped to neck fusion surgery, go back and read the first link I put in). and honestly I would rather go down any other avenue to see if I can find relief from my symptoms before having to go through what Jennifer Brea had to go through, to just see if she qualified for surgery....ugh talk able rods in neck, being woke up after rods are placed, get a bunch of test done on rods, then put back under anesthesia to take rods out.......just read her story and you will know what I am talking about.
Tuesday, January 29, 2019
There goes another six months
I decided I should really write on my blog! First this will be a picture journal!
Since I have a yard to call my own now, I was able to purchase a hobby greenhouse, nothing big. My husband did most of the work in putting it together. I had read some reviewers warning about it flipping in the wind, so I had come up with a solution ( at least I thought) and was going to use a thick wire to anchor it down to the ground. I got one put in before I was out of energy and it was going to have to be done another day, thinking one was fine for now.... It took me a couple of days to feel well enough to go out and work on it, and it had been just fine and dandy out back. No problem at all, even though it had been a bit windy. Anyways I am literally staring out my back door putting on my shoes to go work on anchoring it better, when I see my green house get picked up by just the right angle of wind and start tumbling away! I scream and rush out there, grabbing the one wire I thought I had anchored well enough down. I am holding this wire, and I am pretty much panicking by now as I fight against the wind. I step on the wire and try to start calling people on my phone... of course my husband doesn't answer....next person, my dad, who answers and helps me breath a bit and at least gives me the idea to stack a bunch of stepping stones on top of the wire. I was distraught trying to get a hold of my husband, I was pretty sure my greenhouse was a goner.... I actually ended up calling the lady who works the front desk to transfer me to him! Anyways I finally get a hold of him and he comes home. By this time the greenhouse has tumbled about 30 feet from its original spot. He was able to push the greenhouse over and scoot it back to a safer spot. It now has many bent metal pieces and I am just not sure how well sealed up it is.....I promise I took pictures, but I just can't seem to find them! So when I find them, I will defiantly post them.
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| My House! I believe this was the day I moved in, I am in love! |
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| My beautiful kitchen complete! Except for the fridge, This was a couple days before moving in and was still going through the cleaning process. |
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| Keys to my house! |
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| My sister published a book! I showed up later to her first book signing, and she had almost sold out of books! Its a really good book! |
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| End of July I started having weirder symptoms then I normally have. After a couple of scans, comes to find out I had a kidney stone lodged just outside my kidney, Well since it wasn't passing I had to go get it surgically removed. Wasn't bad, but until I had to get a stent in me...worst pain of my life for the couple of days I had that in......it was horrible. Ended up back in the ER because I wasn't given enough pain medicine. It was not fun. |
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| My sunflower from my back yard I grew! |
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| This is how I garden.... walker and all. |
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| My sister, her room mate and I were looking for fall colors one Saturday! It was fun. |
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| I was fostering litter of kitties and the mama cat ( we kept two of them). I got this cat tree. It is a lot bigger then I expected it to be, but my cats love it. |
Since I have a yard to call my own now, I was able to purchase a hobby greenhouse, nothing big. My husband did most of the work in putting it together. I had read some reviewers warning about it flipping in the wind, so I had come up with a solution ( at least I thought) and was going to use a thick wire to anchor it down to the ground. I got one put in before I was out of energy and it was going to have to be done another day, thinking one was fine for now.... It took me a couple of days to feel well enough to go out and work on it, and it had been just fine and dandy out back. No problem at all, even though it had been a bit windy. Anyways I am literally staring out my back door putting on my shoes to go work on anchoring it better, when I see my green house get picked up by just the right angle of wind and start tumbling away! I scream and rush out there, grabbing the one wire I thought I had anchored well enough down. I am holding this wire, and I am pretty much panicking by now as I fight against the wind. I step on the wire and try to start calling people on my phone... of course my husband doesn't answer....next person, my dad, who answers and helps me breath a bit and at least gives me the idea to stack a bunch of stepping stones on top of the wire. I was distraught trying to get a hold of my husband, I was pretty sure my greenhouse was a goner.... I actually ended up calling the lady who works the front desk to transfer me to him! Anyways I finally get a hold of him and he comes home. By this time the greenhouse has tumbled about 30 feet from its original spot. He was able to push the greenhouse over and scoot it back to a safer spot. It now has many bent metal pieces and I am just not sure how well sealed up it is.....I promise I took pictures, but I just can't seem to find them! So when I find them, I will defiantly post them.
Monday, July 23, 2018
Crazy summer
It is wonderful summer again....Life is going too quickly for me....
I have moved into my beautiful new home! I am loving this house, it took a while in coming,but it seems as if it was worth the wait, and the extra money (at least I hope). The moving in process is going slow. I have all my stuff in this house, but it is taking its time in being put away. It comes with this sickness.... I haven't really taken any pictures yet, because things are not in place yet, like my whole front office area is piled with cardboard, from the moving boxes and the big boxes some of our furniture came in, it is crazy......Any one need big pieces of cardboard?
I have a really cute little garden out back that my sister has been helping me out with, so far 1 cucumber and 2 zucchinis have come out of it. It is full of weeds, but as long as I can keep them out of the area of my veggie plants, it should be fine. Funny story, I planted some "red double wave" petunia seeds last January in my apartment, but they didn't bloom double red for sure, they are pink and white. I just bought them off of eBay, so I am thinking they didn't realize that just because they come from a "red double wave" plant, doesn't mean they will be red. They are still gorgeous :) I hopefully will be collecting some seeds so I can plant some next January :) I love watching seedlings grow.
Even though I have a nice house now, I still find my depression coming at me really bad some days....Like a couple weeks ago.....I just went and bought a puppy.....without talking to my husband......bad idea for several reasons....IT WAS A PUPPY, it took all my energy out of me, and I was in bed for days after, I should have realized this before I bought it....stupid krista. I didn't technically buy it, I asked the lady for a trial period, It was like a I babysat it for 6 hours. I got it's nails trimmed and it had a little sanitizing bath. It was actually quite happy to go back to its siblings and mom. Sometimes during bad depression I make awful decisions......
I have moved into my beautiful new home! I am loving this house, it took a while in coming,but it seems as if it was worth the wait, and the extra money (at least I hope). The moving in process is going slow. I have all my stuff in this house, but it is taking its time in being put away. It comes with this sickness.... I haven't really taken any pictures yet, because things are not in place yet, like my whole front office area is piled with cardboard, from the moving boxes and the big boxes some of our furniture came in, it is crazy......Any one need big pieces of cardboard?
I have a really cute little garden out back that my sister has been helping me out with, so far 1 cucumber and 2 zucchinis have come out of it. It is full of weeds, but as long as I can keep them out of the area of my veggie plants, it should be fine. Funny story, I planted some "red double wave" petunia seeds last January in my apartment, but they didn't bloom double red for sure, they are pink and white. I just bought them off of eBay, so I am thinking they didn't realize that just because they come from a "red double wave" plant, doesn't mean they will be red. They are still gorgeous :) I hopefully will be collecting some seeds so I can plant some next January :) I love watching seedlings grow.
Even though I have a nice house now, I still find my depression coming at me really bad some days....Like a couple weeks ago.....I just went and bought a puppy.....without talking to my husband......bad idea for several reasons....IT WAS A PUPPY, it took all my energy out of me, and I was in bed for days after, I should have realized this before I bought it....stupid krista. I didn't technically buy it, I asked the lady for a trial period, It was like a I babysat it for 6 hours. I got it's nails trimmed and it had a little sanitizing bath. It was actually quite happy to go back to its siblings and mom. Sometimes during bad depression I make awful decisions......
Sunday, May 6, 2018
Tired of being tired
I am really grumpy today and the last couple of days.....
I am extremely angry at this sickness I have
I don't see an end in sight of the continual exhaustion
It's always there, sometimes pounding so hard on my brain I can't speak clearly
I hate the heart palpitations I get for doing the tiniest little things
I am tired of being tired
Doctors have failed me, they have no cure, only things they can do is MAYBE help with some of the symptoms.
It is just so weird to think about how my life was before, this was not something that got progressively worse....it just hit me.....flu like symptoms that NEVER went away!
I am extremely angry at this sickness I have
I don't see an end in sight of the continual exhaustion
It's always there, sometimes pounding so hard on my brain I can't speak clearly
I hate the heart palpitations I get for doing the tiniest little things
I am tired of being tired
Doctors have failed me, they have no cure, only things they can do is MAYBE help with some of the symptoms.
It is just so weird to think about how my life was before, this was not something that got progressively worse....it just hit me.....flu like symptoms that NEVER went away!
Sunday, April 22, 2018
PEM
I have been doing really bad at updating this blog, A lot of it is me thinking "my life really hasn't changed that much", it is just the same old same old most days.
MECFS: Today I want to talk about PEM, because I am having it pretty bad today. I was at my family farm yesterday and the weather was beautiful! I just wanted to play with the cats and dogs, talk to my family and have fun! I don't regret it, even though I am in pain throughout most of my body today, I feel like it was good for my soul. I listened to my body and when I was having bad dizzy/heart palps, I would rest, if I was outside I would usually get a cute dog by me begging to be petted, which I was happy to oblige.
I was excited yesterday because the mama cat had her kittens, but I went looking for them and found them all passed away! I was heart broken! I wanted to bring a couple to my house when it is done :( I am not sure what happened, they were born alive ( at least three) because they had been feeding on the mama cat and I could tell. I am not sure if another animal got to them, the mama abandoned them, or they just were born unhealthy. I was pretty bummed out all night after I got home and kept having nightmares about dead kittens.....
My house is still being built! It is getting closer to being finished! I am super excited!!!
MECFS: Today I want to talk about PEM, because I am having it pretty bad today. I was at my family farm yesterday and the weather was beautiful! I just wanted to play with the cats and dogs, talk to my family and have fun! I don't regret it, even though I am in pain throughout most of my body today, I feel like it was good for my soul. I listened to my body and when I was having bad dizzy/heart palps, I would rest, if I was outside I would usually get a cute dog by me begging to be petted, which I was happy to oblige.
I was excited yesterday because the mama cat had her kittens, but I went looking for them and found them all passed away! I was heart broken! I wanted to bring a couple to my house when it is done :( I am not sure what happened, they were born alive ( at least three) because they had been feeding on the mama cat and I could tell. I am not sure if another animal got to them, the mama abandoned them, or they just were born unhealthy. I was pretty bummed out all night after I got home and kept having nightmares about dead kittens.....
My house is still being built! It is getting closer to being finished! I am super excited!!!
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| My soaker Tub! This is one of the things I am most excited about my new house! |
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| The sun was setting so its not the best picture, but here is part of my kitchen and my banister on the stairs |
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| Trevor decided he liked the middle the best |
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| Tried to take picture of my dad and me but he started coughing just as I took it :) lol |
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| Here is a better one, I love it! Me, Lisa, and Dad |
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| Can you believe my little brother is getting married in less then a month! Look how cute he was as a baby! |
Wednesday, February 28, 2018
hola
I seem to have lost my password for a while and I am finally getting around to getting it changed again.
So
Our house has finally began to be built! Last post I thought it never was going to happen, but we came to an agreement about the price (yes it is still more then what we thought).
The Framing is complete and they are working on the system rough-ins this week.
My back and shoulders have been hurting this last week, I think I have been sleeping funny on them.
I was sick for most of January.....Not fun
Sick for a chunk of February. Decided I needed to be better at staying in and not exposing myself to other people and their sicknesses, it has been a horrible flu season.
So
Our house has finally began to be built! Last post I thought it never was going to happen, but we came to an agreement about the price (yes it is still more then what we thought).
The Framing is complete and they are working on the system rough-ins this week.
My back and shoulders have been hurting this last week, I think I have been sleeping funny on them.
I was sick for most of January.....Not fun
Sick for a chunk of February. Decided I needed to be better at staying in and not exposing myself to other people and their sicknesses, it has been a horrible flu season.
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