Life isn't defined by problems, it's defined by how you deal with them!
Do you ever feel like you are taking one step forward, only to go two steps back? Your life is finally on this wonderful track, you have everything that you could ever want, you're happy, you're in love, you're at peace.....then out of nowhere you get smacked in your face by something. Health, finances, relationships, family, friends, whatever it is, it knocks you quite literally on your ass.
For me, it's been my health. I haven't really told anyone what's been going on, I've closed it off from all but 2 or 3 friends, and I haven't shared it with anyone outside of my family. There's still a road ahead of me before I even really know what is going on, and it's been almost a year now. A year of tests, and struggles, and doubts, and tears, and when those tears came on I've never felt more loved than I do with this wonderful man that I'm engaged to. The man I'm luckily enough to marry in less than 3 months. YIKES! No pressure or anything. So, while we should be incredibly happy and planning a wedding (and don't get me wrong we TOTALLY ARE!) we've also got the added stress of health issues.
Well, what's been going on you ask, and I really don't know how to answer that. I guess it kinda started around the time we were moving back to Illinois, last July, and we really just put it down as something that was happening with the stress of the move, the heat, the packing, loading, unloading, and you know just all of it. What happened was that I started feeling like I was going to pass out, frequently. I'd stand up, and have to grab the arm of the chair or couch, or Shawn would thankfully grab me to keep me from falling. Then the fluttering in my chest started, and I really thought it was just my Mitral Valve Prolapse, so I didn't think anything of it at first. Then it continued and continued and November of last year it was bad enough that Dr Love (my awesome primary doc) decided it was time to put me on a halter monitor. The freaking week of Thanksgiving of all times. That was fun to try and hide, and try I did, although I later found out that I didn't do such a great job of hiding it after all. People saw it and knew what it was after all. Eh, well you gotta try, right? So I wore that one and things were fine in the results for the most part. Next I wore another one the beginning of this year, and then finally an event monitor once I started going to my awesome cardiac doc, Dr E (Efstradiatis). Then of course I had an allergic reaction to the different patches used with the event monitor. Go figure that my wacko self had some random allergic reaction. It was bad enough that my skin was terribly inflamed, pealing, swollen, blistered. It was NOT a pretty site. So the next decision made was to have an actual heart monitor implanted. So I had that procedure done on 05/13/15 and have a Medtronic Implant in my chest. I hate my scar, it still hurts at times, and well let's just say I don't like that you can feel it, and it freaks me out sometimes still. Below is a picture of it. It's really not that big but it sucks all the same.
So a week after I had this implanted I had a Nuclear Cardiac Stress test, which to be honest, at the time I thought was the worst thing I had ever had to experience in my life. After all it took them 6 tries to get a damn IV in and then you truly feel like you are having a heart attack. After all it's induced with a shot of medication. Then a week after that I had a tilt table test, and then finally a week after that it was back to see Dr E. It felt like the longest month ever. After all of these tests and the implant and everything the doctors then decide that guess what, the passing out etc, was not because of my heart.
So off to yet another new doctor I went on June 15th. I don't really have anything nice to say about this next doctor, so I won't name him. Needless to say, he did a lot of hearing and vision tests and decided it wasn't because of any of those things either. Then he said a few things that scared the, excuse my language, shit out of me. He said that because I was also having numbness in extremities, because I was losing use of my arm for sometimes hours at a time, I was unable to feel different things that I needed to have a Brain Scan MRI. I asked why I would need that, he said to check for Multiple Sclerosis. I voiced my opinion that I probably didn't really need that then, and he came back with, yes you do, I believe you've been mis-diagnosed with Fibromyalgia and you may actually have MS. I never, not in a million years, expected to be told this.
I realize that everyone that has been told this in their lifetime, probably had some sort of melt down, I of course had my own melt down. A rather large one I believe. It took me quite a long time to accept my fibro diagnosis, and when I did I became obsessed with learning everything I possibly could about it. I wanted to learn how to manage it, I wanted to help other people that had questions. That's really what brought this whole blog to life. It was a place for me to make sense of everything. I loved saying, I may have fibromyalgia, but it doesn't have me. So what would I say now???? I realize how dramatized this may seem to some people, but I've lived with this for almost 10 years now. Knowing what I had, and learning each year new ways to try and manage it. I've made friends with tons of other fibro warriors, and we've shared our own issues with one another. I learned to accept it and move forward with my life. And now.........now I may have to do that all over again.
So, on June 22nd I woke up with a Migraine, which I'm sure was brought on by all of the stress of worrying and wondering and just not really knowing how to deal with it all or what to think. I went in to my doctors office and got my 3 shot cocktail which usually works great and knocks me out for the day. This time however it wasn't able to do what I needed it to do and woke up on the 23rd with an even worse one and ended up spending the day in the hospital. Yeah. the whole day basically. With an IV in my arm, that took them multiple try's to get and resulted in me threatening a young nurse and telling her to get someone that knew what they were doing. Fun.
Fast forward to June 25th, two days before my amazing bridal shower, and it was time to go in for a brain scan. I didn't have anyone there with me, because we knew Shawn needed to be able to take off work for the results, and at this time I still hadn't told ANYONE else. We were just trying to deal with all of this the best that we could. Saying it was horrendous, just isn't enough. It was truly one of the worst things I've ever experienced. Having a cage over my face, with an IV in my arm, and having to lay there for an hour, with my head in a machine, with headphones on to try and drown out the noise because it's so ungodly loud. Even the smooth jazz on Satellite Radio I requested couldn't drown out the massive machine.
Truer words have never been said. This guy has it correct! Then comes the cage, like laying on a slab of metal isn't enough, they then lock a FREAKING CAGE over your face. No no no they couldn't just lay it over my face, they LOCKED THE DAMN THING OVER MY FACE. You cannot move your head, you cannot do anything really. I realize that saying don't move your head seems like nothing, but come the hell on, you cannot move your head even an inch. IF you do, they will all of a sudden be talking in your headphones telling you that they have to restart the scan and you must hold still. You go through the first round of scans, and you think okay I can do this.......this isn't that bad, I have got this! Then you apparently breathe funny and it's started over. By the time they pulled me out of that damn tube I was ready to scream. Then it was time to get stuck and have contrast through my veins and into my brain so they could see if everything looked the same both ways. Now here is the kicker, I told these people going in, you have ONE try to stick me. ONE. I have my bridal shower this weekend and I will NOT be covered in bruises. Luckily enough, they took me seriously and got one of the lab techs to come down and stick me. She was able to get it on the first try. She was my hero for that day. No lie, my HERO.
Then came the waiting......waiting......waiting.......
Anyone that knows me should know that I have ZERO patience, I know it's a virtue, I know I should work on it, but if I haven't gained any patience in almost 36yrs I don't really see myself starting to now. Thankfully, my doctor knows this already and told me to be in his office that following Tuesday for the results.
In the meantime we had the most wonderful wedding shower imaginable. There was amazing food, drinks, people we love and adore, and babies galore for me to play with. I do believe at one point Shawn pointed out that I was using the opportunity to play with babies as a way to avoid socializing. What can I say, babies are more fun. lol It was such a great weekend though, and I will be forever grateful to everyone that helped keep my mind occupied while waiting for test results. They of course had no idea they were helping me wait, but it still meant so much. We are really lucky to have such great families and friends.
Then came the 29th, one more day and I get results! ONE DAY! Should be easy right? I can get through one freaking day. Instead I had a bit of a melt down and hated the world. I imagined all the worst case scenarios, looked crap up on Google because by this time my results were posted to my "MyUnity" account through the clinic I go to, so I could see what it said, just not decipher everything. Google was both my friend and enemy when doing this. Poor Shawn, he deserves a medal for dealing with me for that day alone. He had to take my phone away to keep me from looking crap up. As we say, I went down the rabbit hole and was imagining all of the worst case possibilities.
The 30th was easier for some reason, not only did I get to keep my absolutely beautiful niece Kayzley for the day to keep my mind off of things, she is a GREAT distraction. :) Soooo......the time finally came to go pick Shawn up from work, drop Kayzley off to her parents and go get results.
The results were not conclusive to say the least, they were a mixed review. My primary doc talked to us about the results and it basically came down to this. The radiologist said there are three lesions (VERY SMALL) in the upper left ventricle, that are representative of mild micro-vascular ischemic disease. If he's correct then yes, it would mean that I have MS. However, my primary doc didn't agree with the radiologist, I do have lesions yes, but he then showed us my brain scan, and then a brain scan of someone with progressive MS. They look incredibly different, and mine are considerably better looking to be honest. Doc wasn't comfortable saying one way or another conclusively, so it's off to a neurologist next. Dr Hafez will be the next doctor I have to see for this, and this won't happen until August 19th. So I'm back to waiting, and not knowing. Have I happened to mention how incredibly much I HATE HATE HATE waiting.
Now if that wasn't enough.....I'm having surgery on August 5th, I am having yet another Hysterscopy, and having polyps removed because on July 9th I also had Sonohysterogram and they did another biopsy on my cervix. So there's that too.
So, I think that's about everything health related. That's not all of my life though, we've started canning, and we're living our lives as fully as humanly possible, and I'm so incredibly in love and lucky to have found the love of my life in Shawn.
I'm sorry if anyone is offended by not being called and told what's going on, but through the years I've found that it's a whole lot easier for me to simply write about it, to process everything on my own in this way. Plus, our families are huge and I have like a million friends and if we took the time to call everyone, there would be like two weeks of our life gone. (OK OK maybe that's an exaggeration) Hopefully all of you understand and love y'all!
Btw.....this is what TRUE happiness and love looks like!!
For me, it's been my health. I haven't really told anyone what's been going on, I've closed it off from all but 2 or 3 friends, and I haven't shared it with anyone outside of my family. There's still a road ahead of me before I even really know what is going on, and it's been almost a year now. A year of tests, and struggles, and doubts, and tears, and when those tears came on I've never felt more loved than I do with this wonderful man that I'm engaged to. The man I'm luckily enough to marry in less than 3 months. YIKES! No pressure or anything. So, while we should be incredibly happy and planning a wedding (and don't get me wrong we TOTALLY ARE!) we've also got the added stress of health issues.
Well, what's been going on you ask, and I really don't know how to answer that. I guess it kinda started around the time we were moving back to Illinois, last July, and we really just put it down as something that was happening with the stress of the move, the heat, the packing, loading, unloading, and you know just all of it. What happened was that I started feeling like I was going to pass out, frequently. I'd stand up, and have to grab the arm of the chair or couch, or Shawn would thankfully grab me to keep me from falling. Then the fluttering in my chest started, and I really thought it was just my Mitral Valve Prolapse, so I didn't think anything of it at first. Then it continued and continued and November of last year it was bad enough that Dr Love (my awesome primary doc) decided it was time to put me on a halter monitor. The freaking week of Thanksgiving of all times. That was fun to try and hide, and try I did, although I later found out that I didn't do such a great job of hiding it after all. People saw it and knew what it was after all. Eh, well you gotta try, right? So I wore that one and things were fine in the results for the most part. Next I wore another one the beginning of this year, and then finally an event monitor once I started going to my awesome cardiac doc, Dr E (Efstradiatis). Then of course I had an allergic reaction to the different patches used with the event monitor. Go figure that my wacko self had some random allergic reaction. It was bad enough that my skin was terribly inflamed, pealing, swollen, blistered. It was NOT a pretty site. So the next decision made was to have an actual heart monitor implanted. So I had that procedure done on 05/13/15 and have a Medtronic Implant in my chest. I hate my scar, it still hurts at times, and well let's just say I don't like that you can feel it, and it freaks me out sometimes still. Below is a picture of it. It's really not that big but it sucks all the same.
So a week after I had this implanted I had a Nuclear Cardiac Stress test, which to be honest, at the time I thought was the worst thing I had ever had to experience in my life. After all it took them 6 tries to get a damn IV in and then you truly feel like you are having a heart attack. After all it's induced with a shot of medication. Then a week after that I had a tilt table test, and then finally a week after that it was back to see Dr E. It felt like the longest month ever. After all of these tests and the implant and everything the doctors then decide that guess what, the passing out etc, was not because of my heart.
So off to yet another new doctor I went on June 15th. I don't really have anything nice to say about this next doctor, so I won't name him. Needless to say, he did a lot of hearing and vision tests and decided it wasn't because of any of those things either. Then he said a few things that scared the, excuse my language, shit out of me. He said that because I was also having numbness in extremities, because I was losing use of my arm for sometimes hours at a time, I was unable to feel different things that I needed to have a Brain Scan MRI. I asked why I would need that, he said to check for Multiple Sclerosis. I voiced my opinion that I probably didn't really need that then, and he came back with, yes you do, I believe you've been mis-diagnosed with Fibromyalgia and you may actually have MS. I never, not in a million years, expected to be told this.
I realize that everyone that has been told this in their lifetime, probably had some sort of melt down, I of course had my own melt down. A rather large one I believe. It took me quite a long time to accept my fibro diagnosis, and when I did I became obsessed with learning everything I possibly could about it. I wanted to learn how to manage it, I wanted to help other people that had questions. That's really what brought this whole blog to life. It was a place for me to make sense of everything. I loved saying, I may have fibromyalgia, but it doesn't have me. So what would I say now???? I realize how dramatized this may seem to some people, but I've lived with this for almost 10 years now. Knowing what I had, and learning each year new ways to try and manage it. I've made friends with tons of other fibro warriors, and we've shared our own issues with one another. I learned to accept it and move forward with my life. And now.........now I may have to do that all over again.
So, on June 22nd I woke up with a Migraine, which I'm sure was brought on by all of the stress of worrying and wondering and just not really knowing how to deal with it all or what to think. I went in to my doctors office and got my 3 shot cocktail which usually works great and knocks me out for the day. This time however it wasn't able to do what I needed it to do and woke up on the 23rd with an even worse one and ended up spending the day in the hospital. Yeah. the whole day basically. With an IV in my arm, that took them multiple try's to get and resulted in me threatening a young nurse and telling her to get someone that knew what they were doing. Fun.
Fast forward to June 25th, two days before my amazing bridal shower, and it was time to go in for a brain scan. I didn't have anyone there with me, because we knew Shawn needed to be able to take off work for the results, and at this time I still hadn't told ANYONE else. We were just trying to deal with all of this the best that we could. Saying it was horrendous, just isn't enough. It was truly one of the worst things I've ever experienced. Having a cage over my face, with an IV in my arm, and having to lay there for an hour, with my head in a machine, with headphones on to try and drown out the noise because it's so ungodly loud. Even the smooth jazz on Satellite Radio I requested couldn't drown out the massive machine.
Truer words have never been said. This guy has it correct! Then comes the cage, like laying on a slab of metal isn't enough, they then lock a FREAKING CAGE over your face. No no no they couldn't just lay it over my face, they LOCKED THE DAMN THING OVER MY FACE. You cannot move your head, you cannot do anything really. I realize that saying don't move your head seems like nothing, but come the hell on, you cannot move your head even an inch. IF you do, they will all of a sudden be talking in your headphones telling you that they have to restart the scan and you must hold still. You go through the first round of scans, and you think okay I can do this.......this isn't that bad, I have got this! Then you apparently breathe funny and it's started over. By the time they pulled me out of that damn tube I was ready to scream. Then it was time to get stuck and have contrast through my veins and into my brain so they could see if everything looked the same both ways. Now here is the kicker, I told these people going in, you have ONE try to stick me. ONE. I have my bridal shower this weekend and I will NOT be covered in bruises. Luckily enough, they took me seriously and got one of the lab techs to come down and stick me. She was able to get it on the first try. She was my hero for that day. No lie, my HERO.
Then came the waiting......waiting......waiting.......
Anyone that knows me should know that I have ZERO patience, I know it's a virtue, I know I should work on it, but if I haven't gained any patience in almost 36yrs I don't really see myself starting to now. Thankfully, my doctor knows this already and told me to be in his office that following Tuesday for the results.
In the meantime we had the most wonderful wedding shower imaginable. There was amazing food, drinks, people we love and adore, and babies galore for me to play with. I do believe at one point Shawn pointed out that I was using the opportunity to play with babies as a way to avoid socializing. What can I say, babies are more fun. lol It was such a great weekend though, and I will be forever grateful to everyone that helped keep my mind occupied while waiting for test results. They of course had no idea they were helping me wait, but it still meant so much. We are really lucky to have such great families and friends.
Then came the 29th, one more day and I get results! ONE DAY! Should be easy right? I can get through one freaking day. Instead I had a bit of a melt down and hated the world. I imagined all the worst case scenarios, looked crap up on Google because by this time my results were posted to my "MyUnity" account through the clinic I go to, so I could see what it said, just not decipher everything. Google was both my friend and enemy when doing this. Poor Shawn, he deserves a medal for dealing with me for that day alone. He had to take my phone away to keep me from looking crap up. As we say, I went down the rabbit hole and was imagining all of the worst case possibilities.
The 30th was easier for some reason, not only did I get to keep my absolutely beautiful niece Kayzley for the day to keep my mind off of things, she is a GREAT distraction. :) Soooo......the time finally came to go pick Shawn up from work, drop Kayzley off to her parents and go get results.
The results were not conclusive to say the least, they were a mixed review. My primary doc talked to us about the results and it basically came down to this. The radiologist said there are three lesions (VERY SMALL) in the upper left ventricle, that are representative of mild micro-vascular ischemic disease. If he's correct then yes, it would mean that I have MS. However, my primary doc didn't agree with the radiologist, I do have lesions yes, but he then showed us my brain scan, and then a brain scan of someone with progressive MS. They look incredibly different, and mine are considerably better looking to be honest. Doc wasn't comfortable saying one way or another conclusively, so it's off to a neurologist next. Dr Hafez will be the next doctor I have to see for this, and this won't happen until August 19th. So I'm back to waiting, and not knowing. Have I happened to mention how incredibly much I HATE HATE HATE waiting.
Now if that wasn't enough.....I'm having surgery on August 5th, I am having yet another Hysterscopy, and having polyps removed because on July 9th I also had Sonohysterogram and they did another biopsy on my cervix. So there's that too.
So, I think that's about everything health related. That's not all of my life though, we've started canning, and we're living our lives as fully as humanly possible, and I'm so incredibly in love and lucky to have found the love of my life in Shawn.
I'm sorry if anyone is offended by not being called and told what's going on, but through the years I've found that it's a whole lot easier for me to simply write about it, to process everything on my own in this way. Plus, our families are huge and I have like a million friends and if we took the time to call everyone, there would be like two weeks of our life gone. (OK OK maybe that's an exaggeration) Hopefully all of you understand and love y'all!
Btw.....this is what TRUE happiness and love looks like!!
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