The "drop foot" situation has lessened. Thank goodness. Now I'm more lost cognitively speaking and there's more pain. It seems as though the more problems I have physically, the less problems I have mentally and vice-versa. I can move my body in almost all directions, but I can't remember my phone number. Is losing grasp on the concept of time a symptom???? Because I've had that for a while and it's getting worse. I think of minutes and hours in a different way than I should, or did years ago. Maybe it's an age thing. Maybe it's normal to do that. But, for some reason I can't get anywhere on time. Even when I plan ahead and set clocks for different times, I'm still late. It doesn't help that partial cause is the forgetfulness. "Oh, no... I forgot my phone." Or, "Where did I put that binder???"
And, the isolation.. I'll mention again... It's very lonely in this world of unknown probable neurological "difference."
I'm also very paranoid. Not of the boogy-man or getting murdered, but of what my partner is thinking... I'm always thinking that he's thinking horrible things about me. It doesn't help at all that he doesn't actually talk to me about what he's thinking. I know there are thoughts... There's a look people get when they have thoughts. He gets that look and when I ask what the thought was, he denies having one, but in a way that is suspicious. I'm not talking about important things either. Just insignificant thoughts that don't matter. The point is, he has a thought. I ask him what it was, and he doesn't tell me. I think I fear if he doesn't tell me about his stupid thoughts, is he going to tell me about his important thoughts??? I shouldn't be concerned about our relationship. It's solid and not going anywhere but forward, but I am so expecting one day for him to just out of the blue to say "It's over!"
I'm just being foolish..
Then at other times I have the excitement and innocence of a child with no care in the world.
I think these are all a part of whatever is causing my hands and the rest to go numb and stop moving. I legitimately don't believe this is all because I'm insane... <---- paranoia
Tuesday, November 8, 2011
Forget-ful-ness
I'm forgetting everything and have no concept of time which makes me late for everything.
Wednesday, November 2, 2011
Ugh, Exhausting
So, today I spoke with my case worker. She told me a decision would be made today or tomorrow about my disability claim. I won't find out until the paperwork is mailed though.... Which sucks. Also, I just had my cervical spine mri today and I have a nerve conductivity test tomorrow... I'm sure they don't have my brainwave tests results and they haven't gotten the notes from my new neurologist. In other words, they have all of my notes from tests that were normal and my first neurologist who thought I was crazy. ... I guess the crazy bit could get me some money, but doubtful. One thing I know is I'm out of money and I am unable to work. I feel like just putting the comforter over my head and cocooning into nothingness because I'm pretty much useless at this point.
My right foot doesn't do what it's supposed to. This is weird to me... The part where it's been consistent and lasted for days. I can't move it upward. I have this weird-looking limp walk and require an arm to hold... I don't like this game. Sometimes I can get it to move upward a little, but it feels like there is something inside my foot blocking the entire motion. Then I start to shake a strange shake. And, after that, I stop trying all together.
I was able to get something for someone to see... My hand became numb over the weekend and then it became swollen. I showed it to my fiance and sure enough he saw it. Then it happened again the next night. He also noticed my ankle and knee to be a little swollen and my calf. These are good things in my eyes because at least other people can experience them, too. It's not just my and my psychogenic-being.
I want to bargain with my disability decision makers and say, "I promise, pinkie-swear, that after they diagnose me and find a way to fix me, I promise I'll go back to work and pay it forward." But, they need me to be permanently disabled??? Soooo.... I can't(?) say things like that. I wish I could though. I'm not one of these people that don't need it, just asking for a hand-out because I don't want to work. Well, of course, I don't want to work, but that isn't why I'm asking for disability. I actually NEED it because at this point I can't even be a greeter at Walmart. (not that that's a bad thing, I just mean I can't even stand around and say hello to people). I know emotions don't count for anything, but, it sucks being like this. I didn't ask for the inability to move when I want to or the pain when I do anything or the loss of memory. I prided myself on my vocabulary and my memory, and my organizational skills. Now, nothing. I'm writing notes all over the house and STILL don't remember. I go from one moment in life to another without knowing how or for what reason I got there. These are not happy things.
If trading these things meant I could get a job like everyone else or at least settle for whomever will hire me because there are no jobs, I would. Just to know that I was ABLE to provide for myself and my family is everything. Being dependent on everyone around me isn't something I feel like getting used to. I can't stand it. "NO, don't help me carry my bag!" Even though I'm stumbling and toppling over like a limp puppet. "I will NOT use that cane!" Even though I can't walk to the kitchen without grabbing everything in my path for balance and coordination AND weight assistance. And, I know I should quit smoking, but smoking is the only thing that I can consistently do and do well. It's the only thing I don't need help with yet. I'm not forgetting how to use my lighter or to pick up another one. Although, my fingers can't always hold onto a stick and sometimes I do need to use both hands to light the lighter.... I sometimes need help... Gah! Now that I'm writing this, I'm realizing even THAT I can't do consistently.
I wish I had followers to comment and share their opinions or issues or complications. At least I wouldn't feel so isolated and lonely. These things make me feel so alone. No one I know understands what I'm going through. It isn't until tears come out or there was the actual visually apparent swelling that people really acknowledge... even then they don't because they can't. Not unless they've been here.
Whatever, OK, yeah.
My right foot doesn't do what it's supposed to. This is weird to me... The part where it's been consistent and lasted for days. I can't move it upward. I have this weird-looking limp walk and require an arm to hold... I don't like this game. Sometimes I can get it to move upward a little, but it feels like there is something inside my foot blocking the entire motion. Then I start to shake a strange shake. And, after that, I stop trying all together.
I was able to get something for someone to see... My hand became numb over the weekend and then it became swollen. I showed it to my fiance and sure enough he saw it. Then it happened again the next night. He also noticed my ankle and knee to be a little swollen and my calf. These are good things in my eyes because at least other people can experience them, too. It's not just my and my psychogenic-being.
I want to bargain with my disability decision makers and say, "I promise, pinkie-swear, that after they diagnose me and find a way to fix me, I promise I'll go back to work and pay it forward." But, they need me to be permanently disabled??? Soooo.... I can't(?) say things like that. I wish I could though. I'm not one of these people that don't need it, just asking for a hand-out because I don't want to work. Well, of course, I don't want to work, but that isn't why I'm asking for disability. I actually NEED it because at this point I can't even be a greeter at Walmart. (not that that's a bad thing, I just mean I can't even stand around and say hello to people). I know emotions don't count for anything, but, it sucks being like this. I didn't ask for the inability to move when I want to or the pain when I do anything or the loss of memory. I prided myself on my vocabulary and my memory, and my organizational skills. Now, nothing. I'm writing notes all over the house and STILL don't remember. I go from one moment in life to another without knowing how or for what reason I got there. These are not happy things.
If trading these things meant I could get a job like everyone else or at least settle for whomever will hire me because there are no jobs, I would. Just to know that I was ABLE to provide for myself and my family is everything. Being dependent on everyone around me isn't something I feel like getting used to. I can't stand it. "NO, don't help me carry my bag!" Even though I'm stumbling and toppling over like a limp puppet. "I will NOT use that cane!" Even though I can't walk to the kitchen without grabbing everything in my path for balance and coordination AND weight assistance. And, I know I should quit smoking, but smoking is the only thing that I can consistently do and do well. It's the only thing I don't need help with yet. I'm not forgetting how to use my lighter or to pick up another one. Although, my fingers can't always hold onto a stick and sometimes I do need to use both hands to light the lighter.... I sometimes need help... Gah! Now that I'm writing this, I'm realizing even THAT I can't do consistently.
I wish I had followers to comment and share their opinions or issues or complications. At least I wouldn't feel so isolated and lonely. These things make me feel so alone. No one I know understands what I'm going through. It isn't until tears come out or there was the actual visually apparent swelling that people really acknowledge... even then they don't because they can't. Not unless they've been here.
Whatever, OK, yeah.
Thursday, October 27, 2011
What's With The Pain???
So, for the past few days I've had a lot of pain. Random, still, but pain. It changes from sharp to dull to achy to heaviness. It is mostly a feeling of heaviness in my legs that is achy and pain in the bottom of my feet. My shoulders are also feeling this and my arms feel heavy. It's hard to make it through a day, and I am not able to complete nearly all of the tasks I assign myself... not that there are many.
All in all, this sucks.
Friday, October 21, 2011
Question Posted in Medhelp.org
I posted this as a question to an online forum. I don't think I have ever done that before. We'll see how it goes. Thought I would document it in this here ol' blog.
I have been having odd "neurological" type symptoms for the past 4 mos. It started with having a constant feeling of dizziness. It isn't necessarily a vertigo, but an off-balance feeling. Within a few weeks I started having temporary numbness in my fingers and hands and weakness when trying to utilize my fingers to type, open, carry things etc. Then after a week I started to have a tremor in my (mostly right) hands. Then I noticed my legs and feet (especially around my ankles (mostly right)) starting to go numb and not responding to my brain. I would think I was doing something, like walking, and realize my feet weren't moving. My gait changed and within a few more weeks my knees started to tremor. During this whole time I have also had odd sensations, like electricity, going through different body parts. And, pain that ranged from a dull ache to feeling pain when being touched. Most of my symptoms come and go unexpectedly to a point. I may have a good day, but then they come back. Only constant is the dizziness.
I went to one neurologist and he gave me xanax and said it was anxiety. He sent me to a psychiatrist. The psychaitrist thinks it's neurological and sent me to another neurologist. This neurologist is sending me to get tests done and on the order form it says "Diagnosis: Vertigo/Dizziness, Tremor-psychogenic, paresthesia-generalized, weakness-muscle, malaise/fatigue-other, cognitive impairment-mild, memory loss, mri of brain was normal, worried about demyelinating disease." I have many other symptoms as well, such as cognitive issues that started with this.
I don't know whether this neurologist thinks I'm having psychological issues or neurological issues because of the coupling of "tremor-psychogenic" and "worried about demyelinating disease." I am afraid that if he's classifying the tremor as psychogenic, he is thinking all of my symptoms are psychogenic.
Are there demyelinating or other neurological diseases that cause a psychogenic tremor??? My anxiety level has gone up severely since all of these symptoms appeared. Could the numbness and inability to move my body have triggered a psychogenic tremor? I have an aunt with ms and obviously a 27 yr old female who suddenly lost the use of her hands is going to think the worst.
I just am concerned with being sent away, back to a therapist when I know there is something wrong with me even if tests don't show it.
I went to one neurologist and he gave me xanax and said it was anxiety. He sent me to a psychiatrist. The psychaitrist thinks it's neurological and sent me to another neurologist. This neurologist is sending me to get tests done and on the order form it says "Diagnosis: Vertigo/Dizziness, Tremor-psychogenic, paresthesia-generalized, weakness-muscle, malaise/fatigue-other, cognitive impairment-mild, memory loss, mri of brain was normal, worried about demyelinating disease." I have many other symptoms as well, such as cognitive issues that started with this.
I don't know whether this neurologist thinks I'm having psychological issues or neurological issues because of the coupling of "tremor-psychogenic" and "worried about demyelinating disease." I am afraid that if he's classifying the tremor as psychogenic, he is thinking all of my symptoms are psychogenic.
Are there demyelinating or other neurological diseases that cause a psychogenic tremor??? My anxiety level has gone up severely since all of these symptoms appeared. Could the numbness and inability to move my body have triggered a psychogenic tremor? I have an aunt with ms and obviously a 27 yr old female who suddenly lost the use of her hands is going to think the worst.
I just am concerned with being sent away, back to a therapist when I know there is something wrong with me even if tests don't show it.
Tuesday, October 4, 2011
Untitled
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Saturday, October 1, 2011
Cars Drive By
Last night we went over to a friend's house and had dinner. It was a lot of fun. We engaged in much needed belly-laughs and delicious food. Very nice end to a week.
I tried to be as "normal" as possible, but some things can't be hidden... just ignored. So, that's what we all did... At a point I quit trying to be "normal" and just was.
Having the luxury of allowance without judgement is incredible. So, I take a little longer to do things... And, so, I can't find words... And, so, my vocabulary has fallen to a 7th grade level at times... Roll it in with jokes or overlook, and we're gravy. I've found there aren't very many places other than home where I am comfortable enough to let my guards down. Last night, like most times we visit, I could. A couple of beers and full tummies later, and even I can stop caring about the frustrations of inability.
I haven't written much this week. I've been too distracted and unmotivated. I did go to see an ENT about possible inner ear involvement with the dizzies...
I started having hand and leg tremors prior to even arriving. Filling out the new patient paperwork was a tedious experience. I was enjoying the waiting time because it gave me an excuse to read. It was peaceful. The office is also used for plastic surgery and spa treatments, so the decor was one of the most calming I've seen. The dark wood of the doors and counters meshed very nicely with the dark greens and purples. The doors were fixed with antique-brass knobs. The waiting area seating wasn't uncomfortable pleather chairs, but instead warm and inviting love seats. I occasionally looked out the second-floor window to see the cars drive by on the road next to medical building. I watched the small people get out of their small cars and walk out of sight. The experience was very relaxing.
When I was called back into the room, the nurse told me to stop being so nervous... They "don't bite." I told her I wasn't nervous... that it was all very calming. The rooms themselves were also done-up in the greens, purples, brass, and dark wood of the foyer. I wasn't sat on a table, oh no, it was a chair. Again, it was much more luxurious than I'm used to. I felt a little like I might be attacked with scented candles and Botox, but that didn't detract from the peace of being removed from the highly distractible world beyond the office doors.
As I sat waiting for the doctor, I started thinking about ways to incorporate their schemes, fixtures, and fogged glass into my own home.
The specialist finally made it to me. He was a young doctor, probably very fresh out of school with strawberry blond hair and a fair complexion. "There's definitely some Irish in that man," I thought to myself.
He examined me: ears, nose, and even throat. When he was done he said, "These symptoms have absolutely nothing to do with your ears."
"I've gone over your symptoms and every possibility, and there is nothing I can correlate with an inner ear problem. It's good you're going to a second neurologist. Stop taking the meclizine. You don't need it, and it may even be hurting the situation."
I thought to myself, "Good, I haven't been taking it because I was never able to get the prescription filled! Plus less cash for meds... Good thing."
He continued,
"This is good and bad. You don't have any of these issues wrong with you, but at the same time that means it's due to some other issue. At least knowing it isn't your ear allows you to narrow down your search. I know you want answers, but the best thing I can say is, stop taking the meclizine... Oh, and I encourage you to quit smoking because it's bad for you. That's it though."
Everything he had said about narrowing down the search I was already thinking. Crossing one off and adding to another... So, now I can know, in my heart, with certainty the dizziness is caused by this "neuro-or-whatever" thing that is all-inclusive. Neurological disorders that include dizziness as a symptom... My basket is overflowing with possibilities! If it turned out that my dizziness was caused by an inner ear malfunction, my load would be lighter, but this is how it goes.
I can't wait to see the neurologist!!!! Even if it is just an initial consultation.
Now for my Saturday to begin (I don't count playing around on inter-webs and blogging as "beginning"). In store for me is an nice evening alone with the man and an episode or two of This American Life. Some light shopping and housework is on the agenda, but I'm just going to enjoy my moments of a sunny, Fall weekend.
It's a beautiful time with the sunshine and cool breeze as my companion.
 |
| (Driving into the city...) |
Last night we went over to a friend's house and had dinner. It was a lot of fun. We engaged in much needed belly-laughs and delicious food. Very nice end to a week.
I tried to be as "normal" as possible, but some things can't be hidden... just ignored. So, that's what we all did... At a point I quit trying to be "normal" and just was.
Having the luxury of allowance without judgement is incredible. So, I take a little longer to do things... And, so, I can't find words... And, so, my vocabulary has fallen to a 7th grade level at times... Roll it in with jokes or overlook, and we're gravy. I've found there aren't very many places other than home where I am comfortable enough to let my guards down. Last night, like most times we visit, I could. A couple of beers and full tummies later, and even I can stop caring about the frustrations of inability.
I haven't written much this week. I've been too distracted and unmotivated. I did go to see an ENT about possible inner ear involvement with the dizzies...
I started having hand and leg tremors prior to even arriving. Filling out the new patient paperwork was a tedious experience. I was enjoying the waiting time because it gave me an excuse to read. It was peaceful. The office is also used for plastic surgery and spa treatments, so the decor was one of the most calming I've seen. The dark wood of the doors and counters meshed very nicely with the dark greens and purples. The doors were fixed with antique-brass knobs. The waiting area seating wasn't uncomfortable pleather chairs, but instead warm and inviting love seats. I occasionally looked out the second-floor window to see the cars drive by on the road next to medical building. I watched the small people get out of their small cars and walk out of sight. The experience was very relaxing.
When I was called back into the room, the nurse told me to stop being so nervous... They "don't bite." I told her I wasn't nervous... that it was all very calming. The rooms themselves were also done-up in the greens, purples, brass, and dark wood of the foyer. I wasn't sat on a table, oh no, it was a chair. Again, it was much more luxurious than I'm used to. I felt a little like I might be attacked with scented candles and Botox, but that didn't detract from the peace of being removed from the highly distractible world beyond the office doors.
As I sat waiting for the doctor, I started thinking about ways to incorporate their schemes, fixtures, and fogged glass into my own home.
The specialist finally made it to me. He was a young doctor, probably very fresh out of school with strawberry blond hair and a fair complexion. "There's definitely some Irish in that man," I thought to myself.
He examined me: ears, nose, and even throat. When he was done he said, "These symptoms have absolutely nothing to do with your ears."
"I've gone over your symptoms and every possibility, and there is nothing I can correlate with an inner ear problem. It's good you're going to a second neurologist. Stop taking the meclizine. You don't need it, and it may even be hurting the situation."
I thought to myself, "Good, I haven't been taking it because I was never able to get the prescription filled! Plus less cash for meds... Good thing."
He continued,
"This is good and bad. You don't have any of these issues wrong with you, but at the same time that means it's due to some other issue. At least knowing it isn't your ear allows you to narrow down your search. I know you want answers, but the best thing I can say is, stop taking the meclizine... Oh, and I encourage you to quit smoking because it's bad for you. That's it though."
Everything he had said about narrowing down the search I was already thinking. Crossing one off and adding to another... So, now I can know, in my heart, with certainty the dizziness is caused by this "neuro-or-whatever" thing that is all-inclusive. Neurological disorders that include dizziness as a symptom... My basket is overflowing with possibilities! If it turned out that my dizziness was caused by an inner ear malfunction, my load would be lighter, but this is how it goes.
I can't wait to see the neurologist!!!! Even if it is just an initial consultation.
Now for my Saturday to begin (I don't count playing around on inter-webs and blogging as "beginning"). In store for me is an nice evening alone with the man and an episode or two of This American Life. Some light shopping and housework is on the agenda, but I'm just going to enjoy my moments of a sunny, Fall weekend.
It's a beautiful time with the sunshine and cool breeze as my companion.
Monday, September 26, 2011
Even If I'm Just Writing For Myself....
Good morning! I didn’t write ANYTHING yesterday. I just couldn’t muster the energy. It was declared, within our household, to be our “Day of Nothing.” That’s what we call days that are spent in pajamas watching television or movies, doing nothing productive. Those are great days! J
Today I woke up with my continued “issues” and my right hand is starting to become weak again. There’s an uncomfortable sensation that runs down my arm, and during this time, I feel myself concentrating harder than usual to make my hand do the things I needs to do. Typing, for instance. It’s really quite amazing how difficult to understand and complex our brains and nervous systems are!
Since I am still waiting on Disability to contact me (or, deny me since it‘s my first attempt), I need to find a way to make money. Doctor’s appointments, medication, food, you know, the usual, need to have some financial backing. By that, I mean, I need to provide them with cash that I, at this time, do not have. I plan on applying for some hostess positions today. I think I can do that for a short shift…. I can try at least…
My guy is pushing me to find a job, and although I try to explain this to him, it’s hard for him to completely understand. At least, that’s the impression I get. I think he thinks it will help my situation to work or find something to do… that’s profitable preferably. Maybe he’s right. So, I’ll give it a go. What’s the worst that could happen??? I get fired from a discount store or a restaurant??? No biggie!
I did find an interesting article about Mayo coming closer to finding a cure for ALS.
http://www.news4jax.com/health/29255222/detail.html
Now I’m off to attempt to be productive!!!
 |
| (This is how I imagine my brain and body communication to look like…) |
Good morning! I didn’t write ANYTHING yesterday. I just couldn’t muster the energy. It was declared, within our household, to be our “Day of Nothing.” That’s what we call days that are spent in pajamas watching television or movies, doing nothing productive. Those are great days! J
Today I woke up with my continued “issues” and my right hand is starting to become weak again. There’s an uncomfortable sensation that runs down my arm, and during this time, I feel myself concentrating harder than usual to make my hand do the things I needs to do. Typing, for instance. It’s really quite amazing how difficult to understand and complex our brains and nervous systems are!
Since I am still waiting on Disability to contact me (or, deny me since it‘s my first attempt), I need to find a way to make money. Doctor’s appointments, medication, food, you know, the usual, need to have some financial backing. By that, I mean, I need to provide them with cash that I, at this time, do not have. I plan on applying for some hostess positions today. I think I can do that for a short shift…. I can try at least…
My guy is pushing me to find a job, and although I try to explain this to him, it’s hard for him to completely understand. At least, that’s the impression I get. I think he thinks it will help my situation to work or find something to do… that’s profitable preferably. Maybe he’s right. So, I’ll give it a go. What’s the worst that could happen??? I get fired from a discount store or a restaurant??? No biggie!
I did find an interesting article about Mayo coming closer to finding a cure for ALS.
http://www.news4jax.com/health/29255222/detail.html
Now I’m off to attempt to be productive!!!
Saturday, September 24, 2011
Drinks Anyone???
This Saturday was spent applying for jobs I "might" be able to do and hardly anything else. I have been drinking. Yes, I know, I shouldn't on the meds, but unless a person can tell me they feel everything I'm feeling in terminology I comprehend, I don't care. One thing I've noticed since I started to drink is that my symptoms have seemed to get better. Is that because they weren't going to show their ugly face this evening? Or, because something about the drinking has "helped" my symptoms? I still have some, but not nearly as bad as they were starting to get earlier this afternoon. The xanax seems to make it worse, and the klonopin knocks me out so I don't know what I'm doing (other than the frequent trips to the potty-store)(I drink lotsa the H2O's). The Lyrica helps a (very) little amount with the muscle pain/weakness/burning. But, the big thing is... My knees haven't been tremoring nearly as much as usual. They were before I started drinking. So, what happened? Isn't alcohol bad for us? I mean, everyone thinks I'm drunk all of the time anyway.... and sometimes I even question myself with how "out of it" I am and "dysfunctionally-related to gravity" I am. But, sincerely, since this started, I haven't been drinking a lot. A glass of wine here and there or a beer. But I haven't been drunk in ages. I'm still doing the "relaxed-shaking" whilst sitting, but the walking is better.... Is it alcohol??? Or, am I just fooling myself? Maybe wishful thinking... If only that worked with the healthy things in my life. :/
"Alcohol also helps to increase the release of dopamine, by a process that is still poorly understood but that appears to involve curtailing the activity of the enzyme that breaks dopamine down." ---- http://thebrain.mcgill.ca/flash/i/i_03/i_03_m/i_03_m_par/i_03_m_par_alcool.html
This makes me seriously question the thought of P.D. No doctor would encourage alcohol consumption. There's no way of getting an accurate answer to my question of "Does alcohol help neurological symptoms?" But, I have read where a few people have agreed that alcohol lessens their symptoms... And, as mentioned previously.... If we seem drunk anyway, what's the harm?!
"Alcohol also helps to increase the release of dopamine, by a process that is still poorly understood but that appears to involve curtailing the activity of the enzyme that breaks dopamine down." ---- http://thebrain.mcgill.ca/flash/i/i_03/i_03_m/i_03_m_par/i_03_m_par_alcool.html
This makes me seriously question the thought of P.D. No doctor would encourage alcohol consumption. There's no way of getting an accurate answer to my question of "Does alcohol help neurological symptoms?" But, I have read where a few people have agreed that alcohol lessens their symptoms... And, as mentioned previously.... If we seem drunk anyway, what's the harm?!
Survived The Night
Good morning. Here is the part where I teach my body to move after a sleep. I do this by walking short distances until I get the hang of it and frequently sitting. My shaking isn't as bad in the morning, just the moving. I feel stiff. I feel like I'm 100 years old. But, after some practice I'm pretty sure I'll have a few hours of close-to-normal movement before the wretchedness of malfunctions start.
Last Night's Adventures:
I went out, saw friends, saw family, and was donated a cup of light beer. Although it was great to see everyone, I can't help but get angry about the way I show myself now. And, ashamed to know how I was and how I am now. The constant horrific movements and my speech... well, coming and going like it does, no one can tell that I'm actually having issues. It's not that I want them to know, but at the same time when they don't know, they make jokes because they don't know. I'm not upset with them, but that increases my distaste for myself and my condition. I was told by my future mother-in-law, who has seen me more often, "You look like you're doing better. You look happy and not all doped up. Are you all doped up?" This was said as I was standing outside smoking a cigarette. My knees wouldn't stop shaking and my gait was laughable. I said, "Yes, I'm doped up. I'm always doped up. I'm just not doped up on the one that makes me AS drowsy." She was trying to be nice, but it came across as a pity compliment. I love her and she loves me and I know she worries and just wants the best for me and her son, but it was so obvious that I was not doing better. Maybe I'm making it out to be more than it is. Maybe I wasn't that noticeably awkward. I do know that it was hard to walk and hard to sit still. Sometimes I am headed for a destination and my legs just stop on me. And, I have to think really diligently to get them to move again. And, sometimes I have trouble lifting my feet. Annoying.
The night was fun... and funny. It was great in spite of my difficulties. I stood at the bar for several minutes thinking about what I wanted to order. What can I afford? That was the main question. Then the realization that even if I ordered a drink, I wouldn't be able to walk it back to my table without spilling it all over everyone in my path. So, I sat back down at my table waiting for the show to start. There were a lot of, "How are you?"'s and "I'm great."'s floating around the smoke filled venue.
Yes, take away all of the physical, I'm great... Oh, and all of the financial worries. And, I'm not trying to complain. It could be so much worse. It could get so much worse. I am honestly thankful, if I'm going down one of the paths I think I am, I'm thankful for even the difficulties of today.
Now, money... That's different. I'm in the waiting stage of the game for all forms of assistance. I wasn't able to perform my job anymore, so that income is out. My partner is providing for us, but he's broke after the bills are paid. I have insurance, but there are co-pays. How many consultations and introductory sessions with specialists does it take to obtain an overdraft fee???? About 2. We need some groceries. We're thugging it with cereal and pb&j right now, but soon the bread and milk will run out. Personally, I'd prefer cigarettes to food because the action of smoking and the concentration it takes, helps my body and brain at lease feel aligned for a second. He doesn't understand that. His hope is that I quit, but he'll settle for a cut-back. He's also never been here.
With him, it was his body. Only his body. The only time he couldn't focus was during a painful spell, and nothing is available to help in those times. I'm going to accept the smoking argument as an agreeing to disagree topic, even if he doesn't.
I came home and took two very low doses of klonopin and fell asleep.
My kiddo is with her dad on the weekends. I hate to say it, but her being away does give me some breathing room. I hate for her to see me like this. I hate that I can't read her a simple bedtime story with grace and enthusiasm. She's understanding though... for a five year old.
My Thanks Portion:
I'm thankful that I woke up this morning. I'm thankful that I could type. I'm thankful that I have friends and family who love me. I'm thankful for the sunshine regardless of the heat. I'm thankful for soda, and I'm thankful that everyday I have the optimism, even if only in the morning, of being myself again.... myself as I was before. I'm thankful for vitamins, tea, water, and coffee. And, I'm thankful to have a house to live in.
Now Onto The Saturdays and Sundays!
What does the weekend have in store??? We shall see...
Last Night's Adventures:
I went out, saw friends, saw family, and was donated a cup of light beer. Although it was great to see everyone, I can't help but get angry about the way I show myself now. And, ashamed to know how I was and how I am now. The constant horrific movements and my speech... well, coming and going like it does, no one can tell that I'm actually having issues. It's not that I want them to know, but at the same time when they don't know, they make jokes because they don't know. I'm not upset with them, but that increases my distaste for myself and my condition. I was told by my future mother-in-law, who has seen me more often, "You look like you're doing better. You look happy and not all doped up. Are you all doped up?" This was said as I was standing outside smoking a cigarette. My knees wouldn't stop shaking and my gait was laughable. I said, "Yes, I'm doped up. I'm always doped up. I'm just not doped up on the one that makes me AS drowsy." She was trying to be nice, but it came across as a pity compliment. I love her and she loves me and I know she worries and just wants the best for me and her son, but it was so obvious that I was not doing better. Maybe I'm making it out to be more than it is. Maybe I wasn't that noticeably awkward. I do know that it was hard to walk and hard to sit still. Sometimes I am headed for a destination and my legs just stop on me. And, I have to think really diligently to get them to move again. And, sometimes I have trouble lifting my feet. Annoying.
The night was fun... and funny. It was great in spite of my difficulties. I stood at the bar for several minutes thinking about what I wanted to order. What can I afford? That was the main question. Then the realization that even if I ordered a drink, I wouldn't be able to walk it back to my table without spilling it all over everyone in my path. So, I sat back down at my table waiting for the show to start. There were a lot of, "How are you?"'s and "I'm great."'s floating around the smoke filled venue.
Yes, take away all of the physical, I'm great... Oh, and all of the financial worries. And, I'm not trying to complain. It could be so much worse. It could get so much worse. I am honestly thankful, if I'm going down one of the paths I think I am, I'm thankful for even the difficulties of today.
Now, money... That's different. I'm in the waiting stage of the game for all forms of assistance. I wasn't able to perform my job anymore, so that income is out. My partner is providing for us, but he's broke after the bills are paid. I have insurance, but there are co-pays. How many consultations and introductory sessions with specialists does it take to obtain an overdraft fee???? About 2. We need some groceries. We're thugging it with cereal and pb&j right now, but soon the bread and milk will run out. Personally, I'd prefer cigarettes to food because the action of smoking and the concentration it takes, helps my body and brain at lease feel aligned for a second. He doesn't understand that. His hope is that I quit, but he'll settle for a cut-back. He's also never been here.
With him, it was his body. Only his body. The only time he couldn't focus was during a painful spell, and nothing is available to help in those times. I'm going to accept the smoking argument as an agreeing to disagree topic, even if he doesn't.
I came home and took two very low doses of klonopin and fell asleep.
My kiddo is with her dad on the weekends. I hate to say it, but her being away does give me some breathing room. I hate for her to see me like this. I hate that I can't read her a simple bedtime story with grace and enthusiasm. She's understanding though... for a five year old.
My Thanks Portion:
I'm thankful that I woke up this morning. I'm thankful that I could type. I'm thankful that I have friends and family who love me. I'm thankful for the sunshine regardless of the heat. I'm thankful for soda, and I'm thankful that everyday I have the optimism, even if only in the morning, of being myself again.... myself as I was before. I'm thankful for vitamins, tea, water, and coffee. And, I'm thankful to have a house to live in.
Now Onto The Saturdays and Sundays!
What does the weekend have in store??? We shall see...
Friday, September 23, 2011
Oh, Dear Friday...
So, today things haven't been exactly great like they should have been. I did take my vitamins and pick up the letter at the post office, but the whole time my knees were shaking. I look insane! My prescriptions weren't even touched yet. I went ahead and took them back. Another pharmaceutical location, here I come! I am going out in public tonight, and I'm a little nervous about it. My body just doesn't do right. I'm twitching and moving oddly and I def can't depend on my speech to cooperate. The people who I will see tonight last saw me when I was pretty much acceptably passable as "normal." I started on the wine early. This may not have been the best action to take, but what else am I to do? I don't know what to wear. I haven't done anything around the house. I did find twitter, though. Small steps towards victory, right?
System Malfunction
My morning started with the inability to wake up… The consequence of this was a rush to get my 5 yr old to school on time. She was ready; I wasn’t. We ran out the door (by run I mean, I focused intensely on moving my legs in a fashion that would be similar to walking). We made it to the school drop-off car lane, and we weren’t the last, so I didn’t feel as much of a failure as I would have if our car was alone.
After I arrived home, I took my last Lyrica and an antihistamine. I’m still mustering the energy to take my vitamins. I also noted quietly in my mind, “I need to pick up my refills and find a way to pay for the meclizine my insurance won’t cover.”
My partner makes me a list every morning, my honey-do list. There are usually only two things on the list. I typically can only mark one off the list. I still don’t know why I can’t just complete the simple tasks he requests. Is it because I’m so entertained by self-induced failure? Or, because I get so distracted so easily? Or, is it because I’m getting lost in the internet? Or, is this an OCD-related compulsion to NOT mark off EVERYTHING? A fear that if I mark off all of the items, something horrible will happen? Or, maybe I’m just lazy.
Today the job assigned to me by him was “go to the post office and pick up his certified-letter.” I attempted this yesterday, but I went to the wrong post office. And, because I had procrastinated until so late in the day, the correct post office was already closed. What would possess me to go to a random post office to pick up a letter at a specific location??? Now I know.
Today the jobs assigned to me by me is, “find out why it’s taken beyond the 7-10 business days to get my medical records from my g.p., dishes, laundry (child's bed-wetted sheets (daily chore, almost)), find a way to make money off of recycling plastics and glass, get prescriptions, and take vitamins.”
Currently, I am not doing any of those things. I am writing and listening to a pod cast of NPR’s Fresh Air (about David Cassidy J ). I don’t know exactly what I want this blog to do for me or others. I guess, I should say, I know what I want this blog to do, but I am not sure I know how to do it. I find that I spend so much time focusing on making my fingers type correctly and re-reading what I’ve written in order to stay on track. I’m including my current symptom list. Maybe someone will read this, maybe not.
One of my more recently occurring symptoms is a knee tremor… Is it a tremor? I’m not sure what a knee tremor would feel like. While at the store last night, I was very obviously having difficulty walking. I looked silly and visually annoying. My daughter told me to stop. I told her I couldn’t. She then hugged my legs in effort to get them to be still. She’s so sweet sometimes.
My leg shaking (different than the “tremor”) has always been with me. I don’t know if it’s nerves, but that has gotten worse… more of an “every time I sit down” thing. My muscles feel so weak, I wonder how they have the strength to keep moving!!!!
As for the section I want to use for Henoch-Schonlein Purpura, I intend on documenting everything my partner and I went through in order to get this diagnosis for him. He is in his 7th month of treatment. He goes on a steroid and then a different drug to help control his symptoms because the steroids are only allowed to be used for a certain amount of time because they lower the immune system. His case is not common. Most of those diagnosed with this disorder are young boys (children), and it resolves itself within a reasonable timeframe. As an adult, this disorder can last much longer and be more intense.
We must be blessed, or, special, or, just plain unfortunate to find ourselves on two different long journeys of medical discovery within one year. Immediate answers would be nice, but that is never how it works in medicine.
To pass time while awaiting a neurologist’s consultation and an ENT appointment, I’m looking for answers myself. I think that’s what we all do when we’re dealing with health issues. I haven’t found any definitive answers for me. I was able to find HSP for my partner as a probable cause of his symptoms, but with neurology there are so many questions. And, that’s what we’re left with.
Here is my symptom list for those interested:
Symptom List (Starting from mid-July 201
ConstantDizziness/Vertigo/Litghtheadedness
Fatigue
Weak muscles (core, arms, legs, neck, fingers, etc.)
Headaches (dull-intense/sometimes sharp pains on both sides of head)
Lack of balance and coordination
Night sweats
Restless Leg Syndrome
Muscle aches, pains, burning sensations
Intermittent
Muscle spasms/twitches (toes, ribs, right flank, hands, abdomen, eye area)
Vision – blurry, words show fuzzy or mix together, room appears darker than it really is, sharp pain behind eyes
Speech – difficulty manipulating tongue, slurred, stutter
Shooting pains (hands, feet, shins, back, rib cage, head, eyes, elbow)
Deep muscle irritation/”itchiness”
“Electric shocks/Energy” (arms, legs, neck, head) (L‘Hermittes Symptom)
Tingle/Itchy (palms, soles of feet)(odd tingling sensation on scalp)
Skin – feverish pain with light touches/clothing
Deep muscle aches (upper back)
Knee pain
Walking – lean/sway/trip/run into things/knee tremor
Tremor – right hand most affected, knees
Itchy skin (between fingers, face, nose)
Numbness – left toe/palm/etc.
Difficulty focusing/staying on task/keeping thoughts/memory/front of head feels “fuzzy”
Weakness between foot and shin
Beau's Lines
NOW, I must go to the post office!
After I arrived home, I took my last Lyrica and an antihistamine. I’m still mustering the energy to take my vitamins. I also noted quietly in my mind, “I need to pick up my refills and find a way to pay for the meclizine my insurance won’t cover.”
My partner makes me a list every morning, my honey-do list. There are usually only two things on the list. I typically can only mark one off the list. I still don’t know why I can’t just complete the simple tasks he requests. Is it because I’m so entertained by self-induced failure? Or, because I get so distracted so easily? Or, is it because I’m getting lost in the internet? Or, is this an OCD-related compulsion to NOT mark off EVERYTHING? A fear that if I mark off all of the items, something horrible will happen? Or, maybe I’m just lazy.
Today the job assigned to me by him was “go to the post office and pick up his certified-letter.” I attempted this yesterday, but I went to the wrong post office. And, because I had procrastinated until so late in the day, the correct post office was already closed. What would possess me to go to a random post office to pick up a letter at a specific location??? Now I know.
Today the jobs assigned to me by me is, “find out why it’s taken beyond the 7-10 business days to get my medical records from my g.p., dishes, laundry (child's bed-wetted sheets (daily chore, almost)), find a way to make money off of recycling plastics and glass, get prescriptions, and take vitamins.”
Currently, I am not doing any of those things. I am writing and listening to a pod cast of NPR’s Fresh Air (about David Cassidy J ). I don’t know exactly what I want this blog to do for me or others. I guess, I should say, I know what I want this blog to do, but I am not sure I know how to do it. I find that I spend so much time focusing on making my fingers type correctly and re-reading what I’ve written in order to stay on track. I’m including my current symptom list. Maybe someone will read this, maybe not.
One of my more recently occurring symptoms is a knee tremor… Is it a tremor? I’m not sure what a knee tremor would feel like. While at the store last night, I was very obviously having difficulty walking. I looked silly and visually annoying. My daughter told me to stop. I told her I couldn’t. She then hugged my legs in effort to get them to be still. She’s so sweet sometimes.
My leg shaking (different than the “tremor”) has always been with me. I don’t know if it’s nerves, but that has gotten worse… more of an “every time I sit down” thing. My muscles feel so weak, I wonder how they have the strength to keep moving!!!!
As for the section I want to use for Henoch-Schonlein Purpura, I intend on documenting everything my partner and I went through in order to get this diagnosis for him. He is in his 7th month of treatment. He goes on a steroid and then a different drug to help control his symptoms because the steroids are only allowed to be used for a certain amount of time because they lower the immune system. His case is not common. Most of those diagnosed with this disorder are young boys (children), and it resolves itself within a reasonable timeframe. As an adult, this disorder can last much longer and be more intense.
We must be blessed, or, special, or, just plain unfortunate to find ourselves on two different long journeys of medical discovery within one year. Immediate answers would be nice, but that is never how it works in medicine.
To pass time while awaiting a neurologist’s consultation and an ENT appointment, I’m looking for answers myself. I think that’s what we all do when we’re dealing with health issues. I haven’t found any definitive answers for me. I was able to find HSP for my partner as a probable cause of his symptoms, but with neurology there are so many questions. And, that’s what we’re left with.
Here is my symptom list for those interested:
Symptom List (Starting from mid-July 201
ConstantDizziness/Vertigo/Litghtheadedness
Fatigue
Weak muscles (core, arms, legs, neck, fingers, etc.)
Headaches (dull-intense/sometimes sharp pains on both sides of head)
Lack of balance and coordination
Night sweats
Restless Leg Syndrome
Muscle aches, pains, burning sensations
Intermittent
Muscle spasms/twitches (toes, ribs, right flank, hands, abdomen, eye area)
Vision – blurry, words show fuzzy or mix together, room appears darker than it really is, sharp pain behind eyes
Speech – difficulty manipulating tongue, slurred, stutter
Shooting pains (hands, feet, shins, back, rib cage, head, eyes, elbow)
Deep muscle irritation/”itchiness”
“Electric shocks/Energy” (arms, legs, neck, head) (L‘Hermittes Symptom)
Tingle/Itchy (palms, soles of feet)(odd tingling sensation on scalp)
Skin – feverish pain with light touches/clothing
Deep muscle aches (upper back)
Knee pain
Walking – lean/sway/trip/run into things/knee tremor
Tremor – right hand most affected, knees
Itchy skin (between fingers, face, nose)
Numbness – left toe/palm/etc.
Difficulty focusing/staying on task/keeping thoughts/memory/front of head feels “fuzzy”
Weakness between foot and shin
Beau's Lines
NOW, I must go to the post office!
Thursday, September 22, 2011
One
I find my talent for writing blogs lack the appeal that I desire. I've attempted in the past. Failed attempts that attract little or not attention or interest. This leaves me apprehensive about even trying my hand this time.
I know blogs are often like journals - I've never been any good at "journaling" either.
Begin Tangent:
As a young girl with crushes and secrets filling me like helium in a hot air balloon, even then my diary (or diaries) stayed stashed in a drawer. Of course, I always wanted to have a fancy diary (grown-up-like) with a modest cover and a lock. I always kept my collection of diaries in the top-middle drawer of my dresser. It was where I kept all of my secret and most treasured belongings. That tiny middle drawer was the only drawer with a lock. Sure, it may have only been protected with a skeleton key, but that was the most protection this young girl could get.
~End Tangent~
As an adult, I find I have very few secrets, and in today's atmosphere of the World Wide Web, even if I had secrets, the world would have access to them. So, I am giving in and sharing myself with anyone interested in knowing me, my difficulties, my challenges, my strengths, and my overall and progressive weaknesses.
Really, what I want are answers. Don't we all? Although, I am doubtful answers will be found through writing in this blog, maybe someone somewhere will read the struggles and accomplishments of real-life person who has no answers and find comfort. Or, perhaps someone somewhere will have stories of their own to share. Or, maybe taking this chance to write everything out will, in some way, will lead to self-discovery. Who knows?
The daily life is what I want to document - my daily life with a partner who has been diagnosed with Henoch-Schonlein Purpura, a daughter who just started Kindergarten, and the out-of-the-blue symptoms that have turned my existence upside-down.
My Daily Goal:
Write, Read, and Find (Oh, and complete my honey-do-list)
Note To Self: Go to the post office, pharmacy, and fold the laundry!!!!! These tasks won't complete themselves, you know....
I know blogs are often like journals - I've never been any good at "journaling" either.
Begin Tangent:
As a young girl with crushes and secrets filling me like helium in a hot air balloon, even then my diary (or diaries) stayed stashed in a drawer. Of course, I always wanted to have a fancy diary (grown-up-like) with a modest cover and a lock. I always kept my collection of diaries in the top-middle drawer of my dresser. It was where I kept all of my secret and most treasured belongings. That tiny middle drawer was the only drawer with a lock. Sure, it may have only been protected with a skeleton key, but that was the most protection this young girl could get.
~End Tangent~
As an adult, I find I have very few secrets, and in today's atmosphere of the World Wide Web, even if I had secrets, the world would have access to them. So, I am giving in and sharing myself with anyone interested in knowing me, my difficulties, my challenges, my strengths, and my overall and progressive weaknesses.
Really, what I want are answers. Don't we all? Although, I am doubtful answers will be found through writing in this blog, maybe someone somewhere will read the struggles and accomplishments of real-life person who has no answers and find comfort. Or, perhaps someone somewhere will have stories of their own to share. Or, maybe taking this chance to write everything out will, in some way, will lead to self-discovery. Who knows?
The daily life is what I want to document - my daily life with a partner who has been diagnosed with Henoch-Schonlein Purpura, a daughter who just started Kindergarten, and the out-of-the-blue symptoms that have turned my existence upside-down.
My Daily Goal:
Write, Read, and Find (Oh, and complete my honey-do-list)
Note To Self: Go to the post office, pharmacy, and fold the laundry!!!!! These tasks won't complete themselves, you know....
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