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Thursday, April 23, 2015

Still No Change In Vision

It’s been difficult lately. I realized I am facing a new obstacle. An obstacle I have no idea how to properly face. The loss of hope. My vision (oscillopsia and nystagmus) is not improving; in fact, it seems to have got a bit worse again. I can’t remember (nor do I want to look it up right now) the numbers regarding how long a symptom usually stays around before it will probably become “permanent”. Some symptoms heal like a cut, leaving no indication anything was ever wrong with your skin, and some scar over leaving a permanent reminder of that wound. Only the scars in my brain are not a simple “visual” reminder but a symptomatic reminder that affects my daily life. Off the top of my head I am not even sure how long this has been around but I know it has not been a matter of weeks but a matter of months and because it has been that long I am loosing hope. Motivation. Energy. Will power.

I have not been wanting to wake up in the morning. My alarm goes off at 5:45am and I get up to turn it off only to lie back down and fall back asleep till about 8. Everyday I sit here and kill time while I count down the hours till I can go back to sleep. The 8 hours I get to close my eyes and dream, 8 hours of life where the world is not spinning, 8 hours where I can function, see, get around, and just be “normal”. Even nightmares are more desirable than actually being awake where even sitting here and trying to write I feel dizzy.

If I sit down and don’t move an inch I can watch a TV show or a movie and for a few seconds at a time forget that I am stuck in this constantly moving world. A world where I can no longer walk in a steady line. A world where I am constantly almost falling and a world where I can’t see anything around me unless I stop and don’t move for around 30 seconds to let everything slow down a bit. Even slowly turning my head left or right is enough to set off the spinning. It is miserable. I am miserable. I don’t want to think about it but how can I live a productive life like this?

I try to stay optimistic but because I chose to not remain “ignorant” in the mechanics of this disease my optimism is slowly burning out like a flame under the water of pessimism. My optimism is drowning in a sea of pessimism and I really don’t like who I am right now.

Equally frustrating is my inability to truly describe what this is like. I can say “I feel dizzy” or “the world looks like it is moving” but that really does it no justice. I lack the vocabulary to express what this actually looks like. It frustrates me! Like I am stuck in my head trying to tell someone something but I am unable to move my lips. I feel… helpless? Makes me wish I could just be put in a chemically induced coma for 6 months while my brain heals and I just dream that everything is OK.

But after all, maybe it is healing, slowly, like how our hair is constantly growing only so slowly that we really can’t tell on a day-to-day basis? Maybe I really do just have to be patient and things will improve with time? What else can I do? I can only wait and hope. It’s just getting so difficult. I am not sure what to do with this lack of hope and motivation. Again, this is a new trial I have never been through; hopelessness. Even in the past, while I was in physical rehab, I at least showed progress, which fueled my hope. I could see the changes almost daily but not now and it’s driving me crazy.

It’s making me desperate. What drugs have I not tried? Baclofen? Maybe diet will help? Stress reduction? All things I am not sure how to properly accomplish. I tried making Salmon for lunch yesterday to increase my Omega-3 intake – green tea (which I hate) for it’s antioxidant properties. I even wonder about new drugs such as Anti-Lingo-1 which is not even FDA approved yet but if I can’t remyelinate that one single lesion on my own maybe I will have to switch to a new medication?

I don’t know, I just want this to be gone. I am no longer waking up and hoping that I will be able to see. It’s like I have accepted this as my new reality. But I can’t live like this. I can survive but I want to actually live. Life was already difficult and now I can’t drive or do anything that I feel I have the energy to do that will help pass the time.

I feel so negative and that is partially why I have not been blogging that much. I just don’t want to think about MS.

Monday, April 13, 2015

Regret… Kind Of…

I am loosing my grip on “positivity”. I am so tired of this visual crap, it’s exhausting; both physically and emotionally. Mostly emotionally. I just want to see a world that is steady so I can do the mundane things I feel like I can physically do like clean and cook or drive myself to the store!

It seemed like it was getting better but now it has taken me a few steps backwards. From what I have heard online, IVIG (Intravenous Immunoglobulin) can cause many symptoms such as dizziness. My first infusion for this new round of IVIG made me dizzy during the infusion but quickly subsided after I was finished so I thought nothing of it. This second round was different. It made me dizzy during the infusion like last time (so I again thought nothing of it) but this time it lasted all day and night! That was Friday and Saturday was even worse. So I tried to look into it but reading was so difficult as everything was sort of blurred together. Imagine spinning in a swivel chair really fast for at least 30 seconds, abruptly stopping and trying to read the fine print of a dictionary. I did not learn much but I did see a few articles saying the effects of dizziness can last 24-48 hours after an infusion. Did I confirm this? No, so I am not sure how reliable that information is.

Sunday; just as dizzy. So I decided that rather than trying to stay on track of a schedule like I have been for the last couple of months to just let it go. I felt so tired! But in one last attempt to “reboot” I took some Ritalin and went to lunch with my parents. I could hardly keep my eyes open, it was miserable! As soon as I got home I went to bed. What a waste of Ritalin…

Anyways, the great thing about sleep is the world does not seem to spin when my eyes are closed. If I dream it’s like I do not even have MS, well, most of the time. A few hours later I woke up still feeling dizzy. After working on a few things and eating dinner I took some Restoril and went to bed. My favorite time of the day now. That was a lot of rest! Surely that would help me some! Nope, Today is Monday, 68 hours after my IVIG infusion and my dizziness remains the same! Part of me wonders if my Oscillopsia and Nystagmus have got better but the improvement is masked by this dizziness? I try to not think of it because it only drives me more and more insane!

Yesterday I worked on my taxes and the financial mess that is my non-MS life. H&R Block wanted hundreds of dollars to do my taxes since I had a few forms to fill. I left and this set in motion an immense feeling of depression. All I have been trying to do is set my life straight and do everything right but it just seems to dig me deeper and deeper into a hole! I was pretty much going to have to pay more on taxes and filing the paperwork than I actually made! So what is the point of trying? Well that is what I was thinking. Luckily my Uncle in Colorado (who is the Vice President of a major Credit Union) was able to help me out; for example, the one form that H&R Block wanted over $100 to complete just needed my name an social security number on it! What a rip off! So my Uncle and my Dad helped me print out all the forms I needed and fill it out… for FREE. Long story short I should owe nothing and even get a small return to help with some of my delinquent bills. So that made me feel a little better.

I still was buried in feelings of regret; why did I play it safe and come back to California to be tested by a doctor (who I trust my life with) for to see if I was developing PML (Progressive Multifocal Leukoencephalopathy) when I could have just risked it, stayed in Colorado and never initiated this Tysabri Rebound effect (Immune Reconstitution)? I would still be in a state I loved, great weather, friends, a job, and best of all, I could actually see! Oh yeah, because no one likes living with the lingering question “am I dying”. I miss being able to see straight so much! You don’t know what you have till you loose it and now I realize that I have been taking something as simple as decent vision for granted.

So yes, on one hand I can look at this situation as regrettable but on the other hand, it is teaching me something I would have otherwise not been able to learn. I try to regret nothing in life. Something positive will always arise from something negative. That is what I want to believe at least. “The wisest of men were the greatest of fools”; you learn the most from mistakes and boy have I made my fair share! I’m just tired. I just want a brake. What am I doing wrong? It feels like the harder I try to “get it right” the harder life kicks me in the ass. All I try to do is be a source of “good” in the world all the while people who are a source of “bad” seem to get off so easy and be so happy. I know life is not fair but come on!

I just want to work, pay my taxes, pay my bills, save a little, and not be constantly bombarded by phone calls from credit card companies and collection agencies. Am I really asking for too much? I want to feel like I am working to get ahead and not just to keep my head above water because I’ll tell you; sometime it gets really tempting to just give up and let myself sink. But for whatever reason, I keep on trying to rise above.

Tuesday, April 7, 2015

Tysabri IVIG Acthar Personal Trainer

I saw my neurologist today who confirmed that I have oscillopsia with a slight horizontal Nystagmus; it is very settle though. He saw it with his ophthalmoscope (I think that is what it is called) so that to me illustrates how subtle it is. Anyways, as I presumed, nothing I can do but wait. He said I have obviously improved since last time so I should not worry.

They got me on the phone with the Acthar people and it is being shipped to arrive Thursday. That is what I think will help the most in my visual recovery which will help everything else like a domino effect so I am eager for that.

My neurologist also got me on the phone with a personal trainer he likes. Not a physical therapist, a personal trainer. He feels I am past what physical therapy can do for me and have to start pushing it further which I am all for. So I see him tomorrow for an evaluation. He does house calls so that is good since I can not drive right now haha…

While I received my 26th  infusion of Tysabri I talked to the IVIG people on the phone. Looks like I will have a nurse here on Friday to infuse my IVIG over an action packed 6 hours! Hey this is good. Personal trainer tomorrow, Acthar on Thursday and IVIG on Friday. You can’t really attack MS any more aggressively than that haha!

Saturday, April 4, 2015

Give Murderer What She Wants; Take What I Need

I am so angry. I woke up, turned on the news and saw this story. A transgender prisoner in prison for second-degree murder is getting a $100,000 sex change procedure paid for by our tax dollars. Now why do I care? I am a non-murderous member of society with Multiple Sclerosis and I NEED help yet the government wants me to pay back the $25,000 they have issued me over the years because

“Oh we were never supposed to approve you for SSI benefits, we don’t know why we paid you and repeatedly reapproved your benefits over the years. We messed up so go ahead and pay us the $25,000 you obviously do not have”. 

Meanwhile, a murderer is PRISON is getting $1000,000 for a sex change he WANTS! This is outrageous! Maybe I should commit a felony and go to prison because they seem to treat prisoners better than the rest of society. We still have veterans from the VIETNAM war starving on the streets in the cold after serving our country but if you kill or rape someone? You go to prison where you get a bed, free TV, 3 meals a day, you can study and get a degree, you get a free gym membership, free healthcare and you can get married. That’s a crazy amount of benefits hard working members of society can’t even get! People who are sick, disabled, can’t work, can’t pay their bills, people like you and me can’t get but a prisoner DOES.

I consider myself pretty liberal but these "prisoner huggers"? I am totally against them. ESPECIALLY when prisoners are treated better than some non-prisoners. OK I need to go stress over my financial situation so the government of California can pay for a murderer to get a $100,000 sex change that is not needed to survive but simply to feel better. I think when you kill someone you loose that privilege but that is just me.

Shame on our government.

Tuesday, March 31, 2015

Maybe There Are No Answers. Fulfillment

For the last month, since my vision has stabilized enough to kind of read, I have been researching my visual symptom. I have come to the conclusion that it is some sort of vestibule-ocular issue such as oscillopsia; the illusion that the world is moving. This results from some sort of slippage of objects on the retina. I don’t fully understand it yet but what I have learned is that nowhere does there seem to be any suggestions on treatment or management. As oscillopsia can be considered an extreme form of nystagmus (an involuntary oscillation of the eyes) the closest thing I can find that may help is gaze stabilization exercise where you basically stare at a stationary object (such as a card with a large letter on it) and you turn your head left and right at the quickest speed you can before you loose focus. I have no idea if this would do anything for oscillopsia. I will bring it all up when I see my neurologist in a week. It’s so hard to live with this visual disturbance. What can I do? Maybe nothing but wait for that lesion to go away. Steroids/Acthar? Maybe if it’s not too soon.

Since I can’t really get around or do anything I have had a lot of time to just sit and think. Too much time maybe… For the last couple of years I have had a feeling of emptiness lingering about me and I quickly attributed it to not having a social life. Not having money… success… things I could show to people. I realized however, none of this is the root cause of how I feel. No, I have lost my feeling of fulfillment; I have no outlet to make up for the things I can no longer do in life. Let’s see, I used to hike, camp, ride motorcycles, fix motorcycles, build things, etc. It made me feel good; happy. I can’t do most of that any more and I never found something to replace it. When you go on a diet you cut certain foods out and in doing do you have to replace them with something healthier. If not you will starve and waste away. With that analogy in mind, I am starving, I am wasting away. I used to draw, sculpt, and write; fictional writing. Fictional writing; maybe I need to pick that up again to use as a new outlet? Maybe I need to blog about world issues, social issues, my random thoughts or just about a funny movie I saw since I have no one to share that stuff with anymore. I am not sure? I have no idea how to start when I am lacking in motivation so much lately.

I hate this visual symptom, it’s making life miserable but obviously it has given me a lot to think about and it has also saved me a lot of money on gasoline since I can’t drive (haha). I have been able to start watering the backyard to try to get the soil ready for a new garden and I have been slowly been learning to take care of myself again as in make myself coffee in the morning or reheating meals in the microwave. Baby steps. I suppose I am getting better much like my hair is growing; ever so slowly. Hmm… I need a hair cut…

Tuesday, March 24, 2015

Symptoms, Health Care, Benefits, Denied, UGH!

So I am just trying to do a progress update to bring everyone up to speed on what is going on in my life. I've been doing a lot of reading on visual symptoms to try to determine what it is that I am experiencing. I came across something that defined exactly what I am experiencing in the simplest way ever. "When I am walking I cannot read signs around me but when I stop and stand still everything comes into focus", they gave more details but this along with everything else was exactly what I'm experiencing. So I dug deeper and deeper and started reading about “vestibulo-ocular” symptoms and though I cannot say I fully understand how any of this works just yet I can say that this is what I am experiencing: oscillopsia.

Yes, exactly what it I thought a few weeks ago. I let go of this idea when I started feeling nauseous and really dizzy. I assumed it was all one symptom but now I am under the impression that it was multiple symptoms that I simply mistook for one. Take away the dizziness and the nausea and I have textbook oscillopsia. The new definition I had found is so much more clear than the old one I was working with. I'm trying to get a referral to an ophthalmologist because obviously I can't diagnose myself, besides, I could be wrong. But knowing what is going on, putting a name to this sensation, it helps a great deal. Now I don't feel a lingering sense of unknown over my shoulder. Unfortunately, from what I have read, there is not really anything that can be done for oscillopsia besides steroids and maybe IVIG (according to some studies) all of which I have done or am still doing. So it looks like I am just playing the waiting game.

I hate the waiting game. Who doesn't? I have to play it when it comes to my health, my recovery. But I am also playing it with a lot of clerical BS. I had complained in the past about how my insurance kept denying all my medication and procedures. Well I got a letter the other day informing me that my Tysabri had been denied. I wanted to drop to the floor and just sink into the ground. What the hell is going on? I just can't catch a break! I had had enough. The next day I called my insurance and asked them to explain to me in plain English why they were denying my Tysabri and why they had denied my prescription for Acthar. Turns out, on the prior authorization forms that my doctor's office sent in? Nowhere did it say I had relapsing remitting Multiple Sclerosis and that I was suffering an acute exacerbation. I was furious.

I faxed both the letters to my doctor's office; I sent it directly to the nurse that handles this. I then tried calling every few hours but was never able to get a hold of her. I called again this morning as soon as their office opened and this time I got ahold of her. I won't go into the details about how our conversation went over but I will say this: she was trying to deny any personal fault and kept trying to interrupt me but I simply just kept talking as if she had not even opened her mouth. Denial? Deny all you want but I just spoke to my insurance yesterday and they told me exactly what I am telling you. She told me she would look into it and call me back. I will give her a few hours. I am beyond sick of being put on the back burner and then paying the consequences for it. So I will do whatever it is that have to do to make things happen.

This includes my situation with Social Security. So from what I understand, I was denied SSDI at my first hearing. I then appealed and at my second hearing they approve me for regular SSI. This was in 2012. I had been receiving benefits until December 2015 at which point I received a letter stating my benefits had been canceled and I had been overpaid $25,000. I talked to Social Security on the phone and I was told that they can't do that, she could see it on her computer that they never even sent out a three-month notice which they are supposed to do. So I went to the Social Security office were they broke it down like this: at that second hearing. Where they told me I had been approved? I was actually denied. Than the fact that I had received benefits for a matter of years was somehow a glitch in the system. So despite the fact that they told me I was approved and had paid me for around three years they are now telling me "Oops, looks like we messed up, we will go ahead to and take that $25,000 back", so they messed up, they acknowledged that they messed up, and I'm supposed to pay for their mistake? Tell me how this makes sense, someone who can't work and needs government assistance to pay his bills is now magically supposed to somehow start working and earning money to pay them $25,000?

I will fight this to the grave. Even if I won the lottery tomorrow and had millions of dollars to spend I would rather spend all of it on the best lawyers in the world to ensure Social Security does not get a penny back from me. This system is so broken! Because I have relapsing remitting Multiple Sclerosis their little computer algorithm decides I am not eligible for disability benefits because though sometimes I can do as much work as a tomato there are some times where I am in "remission", which I am sure all of you know does not mean I am 100% symptom-free, and should be able to work; like anyone could hold a decent job when every few months you have to call off work for a few weeks due to a relapse. It would be easier to get Disability if I broke my ankle and complained that even after it healed it’s still sore. UGH!

 I am wholeheartedly trying to achieve financial independence and my government does not even want to help me get back up on my feet to become a functioning member of society again. Either you are 100% disabled or 100% functional, there is no in between. I will keep appealing, I will hire a lawyer, or I will write my senators, whatever it takes but this is causing me a ridiculous amount of stress. It's actually kind of funny, because let's say they determine I really do owe them $25,000. How do they think they are going to get that from me? I have no money, no income, no assets, nothing. Are they going to send someone with such a severe case of Multiple Sclerosis to jail? That will play really well on the news! All I know is I want this done. I am so tired of feeling like my life is nothing but a bunch of puzzle pieces waiting to be put together.

It's been really rough, mentaly, emotionally. It's like I want to give up but I'm too stubborn to give up. To give up would be to admit defeat something my personality just doesn't like. I can't really see, my motor function is falling apart, everybody is trying to deny me medication and treatment, benefits, and I get nothing in the mail but medical bills and bad news. There is a line from a movie which I can't remember word for word but I know how to illustrate the point. It's like the universe was looking around and spotted me and said, "there you are! I have you now". But I'm sorry to disappoint you universe, I just can’t give up, I'm exhausted from the constant struggle, pushing the boulder uphill; my inner being, my will, it is fractured but it has not shattered. How? I have no idea, like I said, I think I am just too stubborn and all this nonsense is nothing more than fuel to the fire that is my rage. I am stubborn and I am patient.

I may not be as active online for a while, I don't know, I'm having a rough time and I'm just going with the flow and doing whatever makes me feel best.