Well the most recent bruises are interesting... I just got back from Vegas!! Whooo yep I won... OH YEAH! :) But I bumped my "good" knee on the side of the pool and walking... hahaha walking... anyway walking up on our last day in Sin City I felt my giant bruise that was rock hard and interestingly feeling but I can NOT figure out how, when, or why I got these bruises but it wasn't until Monday June 10, 2013 about halfway through the day we had gone to the minus 5 bar for free thanks to Marlene's brother who actually helped create the bar!! And then we went to go start walking back to the casino we had gotten about halfway back and I had to at this point switch my lovely walking cane into my right hand to take some pressure off of my left leg and foot well I started having weird shooting pain and the feeling that it was actually moving up my stupid leg! Well we had to stop and I broke down.... I cried and both Marlene and Tricia tried comforting me and they were trying to convince me to go to the doctor, but I knew I did NOT want to stay in Vegas! :) lol
I finally got through the pain and we got home, and here I am now going through CRAZY leg pains in both... I am having spasms, and sharp pain, and dull deep pain, and pain pain!! So imagine that you want to sleep so bad but someone is constantly gabbing your right knee with a red poker, that a giant fat man is then sitting on your left lower leg just pressing down harder and harder while you try to breath through the pain as a technique! Oh and did I mention that all the while BOTH legs are sitting on top of a awesome campfire that you can't put out and at times it feels like some flames are getting close enough and that they are burning epic holes into your skin and you can't put ice on it for fear of oh just making it spread even further throughout your body..... yeah not tough to see why I can't sleep right... ugh this new pain is something out of this world though.... ugh oh well I am sure I can get a couple hours...
Well I FINALLY got an appointment to see Dr. Kramer and hope fully we can figure out the stupid left leg issue and the left ovary pain issue... oh life I feel like Dr. Kramer must think I'm a hypochondriac.
Thursday, June 13, 2013
A LOT to cover!! Life as it appears to the outsiders
Well... it has been quite a LONG time since I have been on here... I am at this point tonight that I truly haven't been at before. I am truly thankful for the people that I have in my life, and one thing I am most definitely sure of is that I COULDN'T do this without my family and friends support and love.
So to recap the last oh about 5 months for you;
I have FINALLY come to terms with the neurological disease I have been saddled with... or diagnosed with. I understand what life is and how precious it is to me now! I try to live life to the fullest while reading, researching and doing everything I can to truly get, and learn what my body, mind, and soul is going through at the current time and what my future will look like. How I choose to go through this process with determine my goals, life, and attitude. RSD is a REAL and HARD disease to go through and though I have been told that remission is rare at the stage and point I am in, I can always look forward to good days and I need to make those days count!
"Pain is the way of the body to let you know you're alive, and without pain how can we possibly understand and truly enjoy JOY itself?"
After 3 failed attempts at getting insurance to cover the SCS we moved from this idea onto well... nothing at the moment.
March 2-5 I was admitted to Virginia Mason to try and figure out why my body won't allow me to eat, and after TONS of tests I left VM with no answers.... not one!
I have tried new medications.... and I have gotten rid of medications. My current list of medications is still pretty long, I know all the names but explaining these things to people makes my life rather difficult if you can pick up what I'm trying to throw down... :)
Well I take a medication for the nerves and depression. Yes... I was diagnosed with clinical depression which is not a disease I worry about anymore! At first I was nervous to hear my doctor tell me this and as I was crying... again way out of character for me, she said right there, this isn't you! You need to understand that this isn't you, it's not YOUR fault that you are here and that you have reached this place I am just glad you know how to ask for the right help and trust me... this has been a difficult journey. Clinical depression comes hand in hand with RSD/ CRPS, in fact RSD causes depression because the nervous are as Dr. Kramer explains it to me my entire central nervous system is on FIRE. And the nervous are working at a different pace in a different way so the clinically are creating depression... it was better to hear when she explained it but lets not lie at 26 years old I was not thinking I would be dealing with a progressive neurological disease that was now causing me to be depressed... now many people don't know, or didn't know that I was depressed but that is because I always want to show an attitude and mindset that is a role model for my students, and for my family and friends. I don't want to be an inspiration... I just want others to see all you can accomplish when you TRULY choose what and who you want the world to see and treasure you as. That being said I am grateful I got the help I needed so that I can continue and love the person I am and constantly strive to be not only for me but for my students and family!
I also take ondansetron which is just fun for me to say because a drug about dancing is just fun.... right.. well it's for the nausea... ugh and now I get dissolvable tabs to put right under my tongue SOOOO much better now! And I take promathizne for stomach issues, and liquid malox mixed with lidocane so that I can swallow the pills needed. It is haaarrddah sometimes to keep those pills down... ugh let me tell you!
I was taken off of the gabapentin... again... this time they fear I may be having some weird nocturnal seizures, so now two days after my lovely bday I will be having a sleeping eeg done... I am hoping it all goes well and shows nothing just maybe a reaction to the gaba! I also learned more about gabapentin and what it does for your body! I am now gaba free (every time I write it I think yo gabba gabba.... lol) Like that it does help with RSD but some people don't interact as well with the medication because it interacts in the brain and for me is just not liking my body. So it has now been a good month off of it and I truly am just not liking the feeling of not being me... primarily because I feel A LOT more pain as of lately! :( I have just been having issues left and right! But it is not all that one medication...
I am also still on the morphine! :( to be honest I don't even feel the effects as of lately... like tonight I took 3 morphine.... two hours ago and I CAN NOT SLEEP!! I try and take it at night to sleep but doesn't seem to be working... but it worked in Vegas a few nights!
Well I also STILL currently have scurvy... yep folks I seem to be a pirate at this rate... hilarious right I mean I Have the peg leg... well my weird walk, and the cane just need the eye patch and the parrot for my shoulder... meeek polly wanna cracker? No polly too late for theatrics! So for those of you who don't know... yes it is a lack in vitamin C... not seen often... or even really in the US! My email from my doctor was... Hi Hannah, it appears your vitamin C is indeed very low. You are my first case of "scurvy" in my 21 plus years of clinical practice. She then wrote about how to get it back up and got another blood test kinda went up, and another blood test... slightly up!
To add to the lovely scurvy apparently my body doesn't get rid of bruises fast so I am sitting here with a bruises from when I fell down two flights of stairs... yeah yeah I know! But seriously life is getting crazy for me and I feel that I am trying to fight a mystery or non-existent disease that just keeps changing as time goes by! Well when I started this blog I was LITERALLY 10 months to the day that I had injured my lovely knee and spiraled my life down this interesting path of life called ughhhh pain I hate you, you suck go kick rocks across 405 during rush hour!
Well another diagnoses that came was kind of scary for me... I was doing EVERYTHING for RSD by the book, but I was still just having issue after issue. So I had a brain MRI without contrast dye and with contrast dye. It looked normal for now which I have been assured to not get to comfortable with that as my body changes and the RSD adapts that could began to cause more issues in the brain. Well I was then diagnosed by Dr. Kramer to have widespread RSD now as it was mimicking in my hands and my left leg... and she believes is the reason I still can not keep down food... almost 6 months now friends... horrible right! :/
Well I was diagnosed with RND, Reflex Neurovascular Dystrophy when it turned out I didn't have the stomach issues they thought it was and on so the my primary doctor diagnosed me with another type of RSD that demonstrates more of a widespread symptoms, until now I had only heard of RSD/CRPS. So when I went to go look at what the hell this new thing was I am still confused at this point but it sounds like oh yeah only children get it!! But it is essentially getting to the point where my whole body is in pain and widespread to everywhere.
April we learned that the RSD has in fact travelled to my upper extremities, my hands and arms are reacting just as my right leg is to the heat and cold, and even just simply typing on the computer can be horrible and makes them over react. I showed Dr. Kramer and that is when she ordered the MRI.
A lot has also happened in between there. I had to have a lovely... Colonoscopy... yeah who knew at the ripe old age of 26 I would have a wonderful colonoscopy... NOT ME!! Well I was nervous going in because I knew I was not going under general which I thought was a mistake because I have been on high levels of morphine for months at this time and that barely took the edge off he explained everything and then it was time to wheel me back. Well he prepped the room with me in there and I was joking with the nurses and he said ok you ready me thinking uhh hell no! But they placed the oxygen things in my nostrils and then gave me a double dose of the medication.... as I was talking full sentences that made PERFECT sense the doctor asked do you feel anything, I looked at the nurses and said crap did you seriously already give me the dose.... they said um yeah the double dose. He authorized another double dose and again I was just talking and he said well one more guys at that point I started to feel the meds kick in... but TOTALLY not enough. The doctor talked to me a little and focused at one point I yelled out, "Ummm I think you're going the wrong way please stop." He assured me that there was only one.. :) Well about half way my heart rate started going up and my oxygen levels decreased and I just muttered loud enough, "Oh my god I can feel anything, this super sucks in my book."
He said, "I think we may have to stop her stats are dropping."
"Wait, how far are you?" I added.
"A good halfway," Dr. Lord answered.
"OH heck no am I drinking and throwing up that nasty stuff again, gameface just finish I'll be fine."
Well at the end they wheeled me into recovery and warned the staff I have had 3 doublt doses and I will most likely be here "a while." When that nurse left I looked at the recovery nurse and said can I please just get dressed and can you call my ride!!
Well the let me get dressed and Marlene came and asked what took so long as we were walking out, I explained the WHOLE story and Marlene laughed. And I don't why they wanted to keep me in recovery longer. Marlene asked how long I was there I said... about 20 minutes. Marlene's face was like seriously that's it?? How do you feel. I honestly was not one bit groggy or tired. So as we were talking in the car she goes wow you are seriously fine aren't you... I said yep not even one bit tired. So she asked if we could do some shopping at dollar tree I said alright lets go. Marlene was still amazed even until she dropped me off that I was seriously fine! I told Marlene if only they didn't have that stupid policy to make sure you have someone drive you home I would have been fine and could have easily driven myself home! Hahaha oh man...
Well that is all I am sharing in this one! It is ending in April towards the end! I will write more about May and June. But I should finish grading and what not! :) Until then enjoy my Stranger then fiction life!
So to recap the last oh about 5 months for you;
I have FINALLY come to terms with the neurological disease I have been saddled with... or diagnosed with. I understand what life is and how precious it is to me now! I try to live life to the fullest while reading, researching and doing everything I can to truly get, and learn what my body, mind, and soul is going through at the current time and what my future will look like. How I choose to go through this process with determine my goals, life, and attitude. RSD is a REAL and HARD disease to go through and though I have been told that remission is rare at the stage and point I am in, I can always look forward to good days and I need to make those days count!
"Pain is the way of the body to let you know you're alive, and without pain how can we possibly understand and truly enjoy JOY itself?"
After 3 failed attempts at getting insurance to cover the SCS we moved from this idea onto well... nothing at the moment.
March 2-5 I was admitted to Virginia Mason to try and figure out why my body won't allow me to eat, and after TONS of tests I left VM with no answers.... not one!
I have tried new medications.... and I have gotten rid of medications. My current list of medications is still pretty long, I know all the names but explaining these things to people makes my life rather difficult if you can pick up what I'm trying to throw down... :)
Well I take a medication for the nerves and depression. Yes... I was diagnosed with clinical depression which is not a disease I worry about anymore! At first I was nervous to hear my doctor tell me this and as I was crying... again way out of character for me, she said right there, this isn't you! You need to understand that this isn't you, it's not YOUR fault that you are here and that you have reached this place I am just glad you know how to ask for the right help and trust me... this has been a difficult journey. Clinical depression comes hand in hand with RSD/ CRPS, in fact RSD causes depression because the nervous are as Dr. Kramer explains it to me my entire central nervous system is on FIRE. And the nervous are working at a different pace in a different way so the clinically are creating depression... it was better to hear when she explained it but lets not lie at 26 years old I was not thinking I would be dealing with a progressive neurological disease that was now causing me to be depressed... now many people don't know, or didn't know that I was depressed but that is because I always want to show an attitude and mindset that is a role model for my students, and for my family and friends. I don't want to be an inspiration... I just want others to see all you can accomplish when you TRULY choose what and who you want the world to see and treasure you as. That being said I am grateful I got the help I needed so that I can continue and love the person I am and constantly strive to be not only for me but for my students and family!
I also take ondansetron which is just fun for me to say because a drug about dancing is just fun.... right.. well it's for the nausea... ugh and now I get dissolvable tabs to put right under my tongue SOOOO much better now! And I take promathizne for stomach issues, and liquid malox mixed with lidocane so that I can swallow the pills needed. It is haaarrddah sometimes to keep those pills down... ugh let me tell you!
I was taken off of the gabapentin... again... this time they fear I may be having some weird nocturnal seizures, so now two days after my lovely bday I will be having a sleeping eeg done... I am hoping it all goes well and shows nothing just maybe a reaction to the gaba! I also learned more about gabapentin and what it does for your body! I am now gaba free (every time I write it I think yo gabba gabba.... lol) Like that it does help with RSD but some people don't interact as well with the medication because it interacts in the brain and for me is just not liking my body. So it has now been a good month off of it and I truly am just not liking the feeling of not being me... primarily because I feel A LOT more pain as of lately! :( I have just been having issues left and right! But it is not all that one medication...
I am also still on the morphine! :( to be honest I don't even feel the effects as of lately... like tonight I took 3 morphine.... two hours ago and I CAN NOT SLEEP!! I try and take it at night to sleep but doesn't seem to be working... but it worked in Vegas a few nights!
Well I also STILL currently have scurvy... yep folks I seem to be a pirate at this rate... hilarious right I mean I Have the peg leg... well my weird walk, and the cane just need the eye patch and the parrot for my shoulder... meeek polly wanna cracker? No polly too late for theatrics! So for those of you who don't know... yes it is a lack in vitamin C... not seen often... or even really in the US! My email from my doctor was... Hi Hannah, it appears your vitamin C is indeed very low. You are my first case of "scurvy" in my 21 plus years of clinical practice. She then wrote about how to get it back up and got another blood test kinda went up, and another blood test... slightly up!
To add to the lovely scurvy apparently my body doesn't get rid of bruises fast so I am sitting here with a bruises from when I fell down two flights of stairs... yeah yeah I know! But seriously life is getting crazy for me and I feel that I am trying to fight a mystery or non-existent disease that just keeps changing as time goes by! Well when I started this blog I was LITERALLY 10 months to the day that I had injured my lovely knee and spiraled my life down this interesting path of life called ughhhh pain I hate you, you suck go kick rocks across 405 during rush hour!
Well another diagnoses that came was kind of scary for me... I was doing EVERYTHING for RSD by the book, but I was still just having issue after issue. So I had a brain MRI without contrast dye and with contrast dye. It looked normal for now which I have been assured to not get to comfortable with that as my body changes and the RSD adapts that could began to cause more issues in the brain. Well I was then diagnosed by Dr. Kramer to have widespread RSD now as it was mimicking in my hands and my left leg... and she believes is the reason I still can not keep down food... almost 6 months now friends... horrible right! :/
Well I was diagnosed with RND, Reflex Neurovascular Dystrophy when it turned out I didn't have the stomach issues they thought it was and on so the my primary doctor diagnosed me with another type of RSD that demonstrates more of a widespread symptoms, until now I had only heard of RSD/CRPS. So when I went to go look at what the hell this new thing was I am still confused at this point but it sounds like oh yeah only children get it!! But it is essentially getting to the point where my whole body is in pain and widespread to everywhere.
April we learned that the RSD has in fact travelled to my upper extremities, my hands and arms are reacting just as my right leg is to the heat and cold, and even just simply typing on the computer can be horrible and makes them over react. I showed Dr. Kramer and that is when she ordered the MRI.
A lot has also happened in between there. I had to have a lovely... Colonoscopy... yeah who knew at the ripe old age of 26 I would have a wonderful colonoscopy... NOT ME!! Well I was nervous going in because I knew I was not going under general which I thought was a mistake because I have been on high levels of morphine for months at this time and that barely took the edge off he explained everything and then it was time to wheel me back. Well he prepped the room with me in there and I was joking with the nurses and he said ok you ready me thinking uhh hell no! But they placed the oxygen things in my nostrils and then gave me a double dose of the medication.... as I was talking full sentences that made PERFECT sense the doctor asked do you feel anything, I looked at the nurses and said crap did you seriously already give me the dose.... they said um yeah the double dose. He authorized another double dose and again I was just talking and he said well one more guys at that point I started to feel the meds kick in... but TOTALLY not enough. The doctor talked to me a little and focused at one point I yelled out, "Ummm I think you're going the wrong way please stop." He assured me that there was only one.. :) Well about half way my heart rate started going up and my oxygen levels decreased and I just muttered loud enough, "Oh my god I can feel anything, this super sucks in my book."
He said, "I think we may have to stop her stats are dropping."
"Wait, how far are you?" I added.
"A good halfway," Dr. Lord answered.
"OH heck no am I drinking and throwing up that nasty stuff again, gameface just finish I'll be fine."
Well at the end they wheeled me into recovery and warned the staff I have had 3 doublt doses and I will most likely be here "a while." When that nurse left I looked at the recovery nurse and said can I please just get dressed and can you call my ride!!
Well the let me get dressed and Marlene came and asked what took so long as we were walking out, I explained the WHOLE story and Marlene laughed. And I don't why they wanted to keep me in recovery longer. Marlene asked how long I was there I said... about 20 minutes. Marlene's face was like seriously that's it?? How do you feel. I honestly was not one bit groggy or tired. So as we were talking in the car she goes wow you are seriously fine aren't you... I said yep not even one bit tired. So she asked if we could do some shopping at dollar tree I said alright lets go. Marlene was still amazed even until she dropped me off that I was seriously fine! I told Marlene if only they didn't have that stupid policy to make sure you have someone drive you home I would have been fine and could have easily driven myself home! Hahaha oh man...
Well that is all I am sharing in this one! It is ending in April towards the end! I will write more about May and June. But I should finish grading and what not! :) Until then enjoy my Stranger then fiction life!
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