My Thoughts: Time to Eliminate Some Stress

Ok, so I have just about had it with all this stress and all these mood swings, time to get rid of it all! It's obvious that Solu-Medrol (IV Steroids) causes some negative effects in me and today I decided to sit down and weigh the pros and cons of taking this medication. I decided that it seems to be causing me more harm then good. The medication is stressing me out which in turn (do to my apparent sensitivity to stress) is just canceling out any positive effects the medication should be having. So in the long run its just causing me more stress and not really reducing my symptoms.

So now I will focus on my stress management and dieting to reduce my symptoms. The one period of time I seemed to be symptom free was when I was constantly going on hikes, walks, etc: Things I enjoyed doing and things that relaxed me. I think that's what I need to get my health back under control, I need to find my peace, my relaxation, my escape from the world and all it's stress. I need to get active again, go on hikes, embrace nature, and escape the current routine I'm stuck in.

The more detailed, strategic, part of this plan is to identify the stressors in my everyday life and come up with their opposite solutions. For example: I feel like I have no privacy or space of my own so I plan on buying a curtain to divide my bedroom in half so I don't have to actually SEE that I am sharing a room. Then Ill use classical music and other relaxing CD's to hopefully block out the sounds of my household and help me fall asleep with non-stressfull thoughts. I'll basically be creating the illution that I have my own space and privacy.

Music has always been a huge escape for me so I need to take advantage of that, I need an MP3 Player so I can block out the sounds of life when I feel overstimulated by the world. Maybe getting lost in the sounds of music in a dark room will help controll some stress.

I have a few other meditation ideas Ill be trying but bottom line is I have to try what ever I can to avoid the things that cause me stress even if that means waking up at 4:00am everyday to avoid waking up in the middle of a hectic household. Maybe starting my day off with an hour of quiet, alone time, will help me get through the day better. Who knows? I have to try it out and see how I feel. Ill be keeping a new, more detailed journal or blog soon strictly regarding how I feel on a daily basis as a result of changes in diet and habits. Not sure if I will make this public or not yet but maybe I'll be able to track and identify some helpful information regarding my treatment by doing this.

It's time for change, it's time to become a little more proactive, it's time for me to take controll of my health, its time for me to take controll of my mind.

I said before that I believed the mind and body are directly related when it comes to health, one can influence the other strongly, but I seemed to have forgot this... I need to regain my mind so I can regain my body. Time for some change.

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My Thoughts: Sometimes I Just Want to Leave it All Behind

Obviously I have been going through a bit of a rough patch in the last week or so as I always seems to go through when doing my IV treatments. The Solu-Medrol (Steroids) severely effect my mood and makes functioning as a "normal" human being kind of difficult especially when it seems like no one really, truly, understands what I'm dealing with. Its hard for people to understand what they can't see and the symptoms I am fighting off right now are all mostly invisible with the exception of my behavior but people react to that differently then they do when they see someone having trouble walking or standing which is ironic because in reality most these "invisible" symptoms are much more frustrating then then the more obvious, visible ones.... Sometimes....

My point is, when it's hard to walk you can literally find someone to lean on but when your emotions are collapsing or simply just out of whack, there is not much to be done but suffer it seems. That seems like a rather foolish, immature response but that's simply because I have yet to experience anything different... This is why sometimes I just wish I could leave it all behind just for a day. I wonder if I will ever experience that again? One, simple, day where Multiple Sclerosis never crosses my mind, one day where I forget that something is wrong with me, one day where I can feel like I am living a normal life. That's all I want sometimes is to just not have to think about ANY of it but I can't seem to get that.

What do I need to change to make this happen?

I don't know. 

I just know I want things to be different.

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My Thoughts: When MS Gets the Best of Me

Since the beginning of my blog I have been told nothing but good things about my attitude as I do my best to maintain a positive one. I have mentioned just a couple times before that this is not always the case but regardless, I do my best to keep my content positive. However, I would be lying if I said that MS never got to me. That's an inevitable factor of dealing with such a disease, every once in a while, it will get the best of us. I believe that I do in fact deal with my disease pretty well for the most part when it comes to my mental and emotional well being but last night for example, I did have a bit of a breakdown. I think it's necessary for me to share this because like everything else I share about my MS experience, it's just part of the truth and I can't hide any of that from anyone. It's important for people to see the contrast that can exist within me otherwise my usual positive attitude really means nothing as I could just be manically optimistic about my life which is definitely not the case: Anyone who personally knows me could vouch for that, it may be hard for my regular readers to believe, but most my friends would consider me to be a pessimist, someone who only sees the bad in life, in society, in people. I agree that I can often be pessimistic but I try my best to maintain a balance of reason, logic, and emotion when it comes to my judgment of the world and the people around me and so I believe it is important to be able to express both optimism and pessimism when necessary. Anyways, to hide part of the truth would be nothing short of manipulating the reality of dealing with Multiple Sclerosis which is what most people really are interested in. The reality of MS.

So the reality: The Dark Side. Logically I know I have to deal with a lot more then the average 20/21 year old male, I know it takes a lot of strength to get through what we MS patients have to deal with but that doesn’t change the fact that every once in a while I emotionally feel quite pathetic. It's only natural that I want to be able to keep up with people my age, to be able to do the things a 21 year old male should be able to do, but the stark reality of my life is that that may not always be possible and so emotionally, I catch myself feeling like less of a man for not being able to do the things that society has taught us makes men men. I grow extremely frustrated with myself when I fall into this dark mood, the perception of my handicap is negatively amplified. My attitude dramatically shifts into the dark when I have trouble buttoning my shirt, walking in a straight line, thinking clearly, etc. Things that normally merely bug me but don't destroy me. I am a very stubborn and prideful individual and nothing destroys me more then having to mutter the words “I can't” as a result of something I can't personally control because deep down inside, I think I want to have full control, at least over something as simple as my own body. Who doesn't want that? But to want full control over something that is uncontrollable by nature is simply unrealistic. But to have to tell someone I can't hang out because it's 8pm and I have no energy just drives me mad! I want to force myself to keep up with everyone but I understand logically that I have to recognize my limits in order to prevent things from getting worse. It's things like this that just make me feel pathetic, things like this that sometimes make me want to just fester in a world of depression. I do my best to destroy these thoughts immediately as I consider those thoughts to be a result of MS winning, taking the lead, and I'm far too stubborn to let that happen.

Something a lot of people with MS talk about I have noticed is how no one really, truly, understands what people with Multiple Sclerosis have to go through, have to deal with deep down inside. This is definitely something I have felt many, many, times. No matter how much support you receive from family and friends the fact of the matter is that they don't, they CAN'T fully understand what we are going through in our minds and in our hearts. It's nothing personal, it doesn't mean we don't appreciate those efforts of support any less or that they don't help it's just simple common sense: You can't explain the concept of color to the blind, the concept of sound to the deaf, you might be able to get pretty close to the truth using words alone but you can never fully translate the actual feelings themselves. This creates a large gap in communication between those with MS and their loved ones because sometimes it's hard for them to fully comprehend why we feel the way we feel, act the way we act, think the way we think, and need the time alone that we sometimes may need. It's not that our loved ones are doing something wrong or not doing something right, it's just that sometimes some of us have to deal with things differently to get through our rough patches because it's not always possible to properly communicate what we are going through. Everyone is different when it comes to dealing with complicated thoughts and emotions and for me I sometimes just need time to let my thought clear and rationalize. We can only deal with our problems the best way we know how to which is why it's important for our loved ones to understand that it's nothing personal, it may be hard to understand, to accept, but it's like I said, you can't explain that the sky is blue to someone who doesn't understand the concept of color. The key to getting through these bumps in the road is open communication, you may not fully be able to explain what your feeling, but as long as you try your best, that's half the battle.

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Progress Update: Solu-Medrol Round 3 (IV Steroids)

Yesterday I started my third round of Solu-Medrol, the IV steroids, and I will be going in again Today, Friday, Monday, and Tuesday for about an hour a day (hooked up).

Yesterday went pretty quick and I'm sure today will as well, 1 hour is so much better then 2 hours, some how it makes all the difference. I feel bad for the people who have to spend 6-8 hours in there like the lady I shared a room with who was having some sort of blood transfusion.

So I have finally identified just how the Solu-Medrol effects me after an infusion: They always said it would keep me wired if I take it at night (which is the only time I have been able to get in) and at first I didn't feel like it effected me at all. I was still tired as hell when I got home but now I have realized it keeps my MIND wired, not my body. I was staring at the ceiling for quite a while last night, my body was dead but my mind was racing, took me a while to actually fall asleep even with my Clonazepam.

I just want to get through this treatment and I hope it really helps this time around. It didn't seem to do too much last time but we will see, my symptoms are different this time. I just want my balance, walking, and fine motor control back. Going to have to bust out the voice recognition software soon, trying my best not to, but typing is getting a little tricky, let's see if I can avoid it this time though.

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Progress Update: Getting Clumsy Again

So at this point there is no doubt that I am further relapsing... At first it was still questionable as to wether or not I was just dealing with some day to day flare ups but nope, definitely an actual relapse which is funny because I never got rid of my other symptoms from my "second exacerbation" so I never really went into "remission" to begin with but like I have said before, I don't think that is such a good word to use for my MS, for me there are good days and there are better days along with the bad days.

Anyways, my left hand is losing strength, coordination, and fine motor capabilities again. I'm still able to type but it isn't as easy nor is playing the piano. I am noticing that I am loosing my grip when holding something such as a glass of water. More noticeably is my walking and balance that is being effected. The strength and coordination in my left leg is once again fading causing my gate to be out of whack again but not as bad as it's been in the past, just walking a little funny is all. Also loosing my balance a lot more but haven't fallen yet, just bumping into walls and what not. I have also noticed an increase in sensitivity to cold objects against my skin on the right side of my body but other then that no new symptoms seem to be popping up.

Still dealing with the tingling in my left hand, the Lhermitte's Sign, and the cognitive issues that have been present for so long now.

I took it upon myself to increase my Prednisone to 70mg the other day and last night my doctor FINALLY replied to my emails and said I should increase to about 60mg so I was close on my guess but I'm staying on 70mg as I would like to be a tad more aggressive. She also agreed that the next best course of action would be more Solu-Medrol (IV Steroids) so hopefully I can get that set up for this coming up week and get some of my balance and fine motor control back. We shall see!

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My Thoughts: State Disability - Works for the Cheaters not the Needy

 

So once again I am going to rant about State Disability and welfare in general...

It is an unfortunate truth that welfare typically does not benefit those who really need it. Rarely does welfare make me feel well or like the system is fair. It seems as though if you try to do things right and be truthful with the system you get screwed but if you bend the truth and try to cheat the system like so many do you can so easily reap the benefits.

I have tried to be truthful when it comes to disability but by doing so disability is screwing me over. I am truly disabled and can't really work right now and I can't even get enough help to survive yet I know of people who have been living pretty well off unemployment alone. They get enough money from EDD to pay the bills and MORE. How is that fair? I know of a girl who has one child and gets $5,000 a semester from financial aid and almost none of that goes to school and absolutely none of it goes to her child because she doesn't take care of it. The benefits she received went to buying a car, an X-Box, a Digital SLR camera, and a bunch of other unnecessary junk. Again, I can't even pay my bills and fill my stomach with healthy foods... How is it fair that these people are buying cars and moving out off welfare alone???

So why am I ranting about this? Let me explain: I received my first payment for my new disability claim back in January. They paid me for December and January to catch me up. At this point I should receive a check from EDD every 2 weeks. 4 weeks later, nothing. I call and call and call to try to find out why they stopped paying me but of course I couldn't get through. Then I found their email so I send them some emails asking the same question and finally I get this response:


"Because of your request to have the CED changed, we need medical going back to 08/05/10. If the change occurs there will be an overpayment due to you receiving UI at the same time. Please have your dr complete and return the form sent to you on 01/24/11 and allow processing time."


I was so confused. What request? What's a CED? August of 2010? That was like 7 months ago! And what form? I never got any form! So I start calling again and to my surprise I got through after only 12 minutes on hold, seriously that is amazing as it usually takes at least 30 to 45 minutes to get through!


So after arguing with this lady for 10 minutes who was being a jerk from the get-go I figure out what was going on.


My doctor put me on disability August 5th. Before I could turn in the Disability paperwork I got worse so my doctor decided to extend my off work status. The new off work status started September and ended a little later. I'm assuming that EDD received the second off work status and not the first because this lady was trying to tell me that I did not see my doctor in August because she had a form right in front of her that said I didn't start disability til September. First of all, how are you going to tell me when I went to the doctors, when I got sick? 

I tried explaining to her that I had been trying for months to correct that issue so I could get paid for August. Well this is when it all fell together in my head, when it all made sense. The letters I sent them back in October about correcting my actual diagnosis date were just barely processed in January. My letter was just sitting around for months on someone's desk. So the reason they stopped my benefits is because they think I was receiving unemployment in August and now that I am saying I couldn't work in August they think I was lying. I then tried to explain to this lady that I did not receive unemployment in August, that an Unemployment agent already contacted me and gave me all the proper form to cancel my unemployment so that I wouldn't receive dual benefits from EDD. Everything was straightened out but this lady was just set on the idea that I was lying and kept telling me I was wrong and what not.


Now here is what I find peculiar about this situation: How screwed up is your system that you can't tell if you sent me MONEY for a specific period of time??? If you can see that I didn't receive money from Unemployment in August then what does it matter if I told Unemployment I was sick or not? That's what I fixed anyways, a long time ago! I didn't receive ANY money from ANY department of EDD in August so why is it necessary to put a stop on my current claim 7 months later??

Secondly, how are you going to tell me that I'm lying about when I got sick, whether or not I settled things with EDD before, AND whether or not I sent that letter in October not January when I have official EDD paperwork (half of which is signed by my doctor) stating that I WAS in fact sick during August, I DID talk to someone about Unemployment, and I DID send that request back in October.


This lady was just having a bad day and taking it out on me, well, that and the fact that everyone who works for EDD is borderline mentally ill (in my experiences at least. My sympathies to those who are well in the head but stuck working with all the other idiots at EDD).

Anyways, this lady was done talking to me, done trying to understand something so simple, so she told me I'm just going to have to write a letter to the Long Beach Department and wait for them to process my request. SO, I have already gone 4 weeks without any income, bills are coming around the corner, and I have $8.00 in my bank account... Now I am supposed to wait another 2-3 weeks? I'm sorry but I'm not going to sit around while they take their precious time "handling" my paperwork. So, I sent them another email today and I will be sending them a stack of letters, all exact copies, so they don't loose any of it this time. I sent 2 today, I'm sending 2 tomorrow, and then one everyday till I get the response I want or until I run out of stamps. 

That should get the point across....

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Progress Update: Playing Doctor

So I have been getting progressively worse in the last week or two, my balance is horrible, my gate is off, I am noticing some occasional weakness in my left leg and left arm, a slight loss of fine motor control and coordination in my left hand, and of course there is still all the cognitive junk. I blame this partially on stress but the most logical and obvious explanation for my steady increase of my symptoms worsening would be the fact that I am finally on a really low dose of Prednisone (steroids). I have been slowly tapering down for a while now and that seems to be consistent with my symptoms flaring up.

Since my neurologist isn't exactly “proactive” with her patients the way she should be I have taken it upon myself to play doctor. I am increasing my Prednisone back up to 70mg over the course of this week, I believe that since I have been on such a slow taper and low dose of steroids in the last couple of months I am hoping that quickly rising back up to 70mg will reduce some of my symptoms. I have educated myself enough to know what I am doing with this medication and have been on it for so long that it is just as casual to me as ibuprofen is to the average over the counter consumer. Besides, I figure I can wait a month to see my neurologist who is just going to do the same exact thing or I can get myself started earlier before things get worse and require a week of IV treatment (Solu-Medrol).

Sad that a patient should even have to consider “self-treatment” but unfortunately thats the way it is with Kaiser, Im not sure how other doctors are but Kaiser is just a waste of time which is why I have to do so much of my own medical research. I don't trust any of my doctors and none of my doctors really seem to care for me as a patient as much as they care for me as a source of income.

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Progress Update: More Useless Meds

Well I think I forgot to mention in my last update that my neurologist prescribed me more medication during my last visit: Nortriptyline for my Lhermitte's Sign.

I was told to take it at night as it would make me drowsy and that I might even be able to substitute it for the clonazepam I currently take to help me sleep and overcome restless leg syndrome. I was told that if i take it at night I shouldn't experience the Lhermitte's Sign durring the next day. So far I have taken this medication 3 nights in a row and have noticed no change. She did say after about a week I could up the doseage to 2 pills a night so I guess I still have to wait and see.


Here is the thing, I looked up the medication as I do with everything, and turns out, Nortriptyline is just an antidepressant! Now I know antidepressants are sometimes used to treat other things but what worried me is the fact that I am already on an antidepressant... Now I'm no doctor but I would imagine that you shouldn't mix too many pills that alter the balance of chemicals in your brain...

So my next step was to run these medication through a drug interaction tool at drugs.com. Guess what? MAJOR INTERACTION with an exclamtion mark in a red box. Nice. Go figure.

"Seizures and delirium have been reported, as well as a fatality attributed to fluoxetine-induced chronic amitriptyline toxicity. Pharmacodynamically, the combination of fluoxetine (or any other selective serotonin reuptake inhibitor) and a TCA may potentiate the risk of serotonin syndrome, which is a rare but serious and potentially fatal condition thought to result from hyperstimulation of brainstem 5HT1A receptors."

Now I am sure these horrible reactions are rare BUT, I sure would have liked a heads up... I emailed my doctor but of course she takes like a week and a half to get back to her patients, just enough time for me to um.... die? God I can't wait to get into Loma Linda... I hate Kaiser with a passion.

Part of me wants to think that she is just throwing useless medication at me to simply SELL MORE medications... I don't know, I'll be doing much more research on this medication to see if I should really be worried or not but for now, I guess I'll just keep me fingers crossed.

Oh yeah, almost forgot to mention, my balance was really bad yesterday, too soon to tell how it's doing today, we will see... Thanks for reading.

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Progress Update: My Life May Be Un-Freezing

I know it's been a while since I have posted but I have been pretty down lately so I have just been focusing on getting through the days. Luckily it seemes as though thing may start slowly rolling again!

First of all, I saw my neurologist today and after countless emails and phone calls she finally gave in and sent out my referral to see an MS Specialist at Loma Linda University Medical Center! YAY! Hopefully the approval process goes smoothly, should find out in a week or two. Funny though, just found out a fellow MS friend of mine (who I met through this Blog) has the same neurologist as me in Riverside! What a small world huh? Seems as though our doctor has been telling us two different things regarding the same questions.... Hmm... I have a LOT to say on that but not today, Ill be dedicating an entire article on this particular matter and will be interviewing a few people about the subject. Should be interesting!

On an unrelated note, the lawsuit I filed regarding the Lemon car I bough is starting to move a bit as well which also made me happy. The court paperwork the defendant has been hiding from was finally served via a Moreno Valley Sheriff friend of mine. So now she HAS to show up to court or else a bench warrant can be issued for her arrest! So hopefully I see my $2,000 soon so I can get a new car and start looking for a new job! Just got to be a little more patient!

I should hopefully have some more postings soon, just not much to write about at the moment. Thanks for reading!

PS- Yes, the waterfall IS FROZEN! Haha coolest thing ever!

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Progress Update: 9 Cubic Feet of Space

 

All the Space I can Call Mine... More or Less...

It's been a while since I did a progress update as I have been focusing a lot of my time on my photography and working on my little guide for newly diagnosed MS patients which I have still yet to finish do to a strong lack of overall motivation I have been experiencing in the last week or so... I haven't really been depressed so to say, I have just been without motivation to do anything right now... It's horrible...

A lot of this has to do with my growing frustrating regarding my current living situation. For those of you who do not know. I live with my parents in a household of 6 people (including myself). I have three younger  brothers and this is a 3 bedroom house... So... My parents share one room (obviously), my two youngest brothers share the second room, and my last brother and I share the last room...

The room is about 10'x10' and after the room is divided in half and then my half is filled with my bed and "desk" I am left with about 9 cubic feet of space... That's a 3'x3' amount of space that I spend most of my day in... This obviously is an easy way to go insane, I basically live in a cubical...

What really gets to me though is the lack of privacy I have, something any 20 year old would appreciate to have. I awake everyday to either the sound of yelling as my brothers struggle to get ready for school on time or the sound of my dad waking the brother I share a room with because apparently he does not know how to set an alarm... Though, I don't know whats better, waking up to the sound of someone else's alarm or someone knocking on the wall telling my brother to wake up as if I wasn't in the room as well.

What I would give for my own room! Somwhere I could actually lock myself away for a while, somewhere I could sit and write, or just lay down for a bit without people barging in and out like this was a hallway of some sort. No knocking, no nothing, just barging in and out. This gets on my nerves above all else.

But I really have no right to complain, I am 20 years old, I have no job, and have made no progress towards setting up my life and moving out. I am in someone else's house and so I have to live by their means of living. So ultimately, what's REALLY stressing me out is the fact that I can't do much* to move out any time soon, something I REALLY want right now.

Stress is obviously really bad for MS and should be avoided at all costs to reduce the effects of symptoms. The other night I had no tingling in my body when I tilted my neck down, I was so happy that it seemed to have gone away. Next day I wake up to my family is fighting over school matters and so I start my day in the middle of a stressful situation. That day the tingling came back and it has yet to subside. It's literally effecting my physical health so I REALLY feel like I need to do something to move out but I'm not sure how to go about this situation.

I'm just about ready to forget about disability and start looking for a job again and just do my best to work despite my current symptoms. Oh yeah, I almost forgot, I still haven't got my money back from the people I bought my DUD car from even after I won in court, so I have been without my own car since July of 2010, kind of hard to get a job and go to school without your own car! Getting sick of trying to work around everyone's schedule to borrow their cars, it makes everything very limiting. I am really pissed at these people who won't pay up! They lost fair and square, they lied to me, they owe me my money, they arn't paying, and they are greatly getting in the way of me progressing in life!

If I didn't have such horrible balance issues along with reduced vision and cognitive function I would put aside some disability and buy an old motorcycle, fix it up, and use that for now, but I was skeptical to do that BEFORE I had MS so forget that haha! I would walk around town like I used to in highschool but I'm finding I "overheat" really easily and it's already starting to warm back up where I live... Summer is right around the corner so it will be back to hiding in the house from the heat.

I just wish I could move forward! I wan't my own space! I want to move out! I have a friend who wants to get a place with me but I have no income so he is stuck in his crappy living conditions as well. ARG!

Anyways, symptom-wise not too much different. Still at a stalemate, light tingling in arms, chest, and spine when I tilt my head down. Balance issues and pretty bad cognitive functions. That's about it.

Well I guess this was more of a venting session then it was a progress update but hopefully thing will turn around soon so I can be more productive and write about some more positive stuff.

Thanks for reading!

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