Thursday, July 24, 2014
That’s right, for the first time in about 4 years I have an actual hourly job! Not my own business, freelance work, consulting, or writing, no; a regular, hourly job. It’s retail but guess what? I am happy for it! I liked retail and I have always wanted to work for this company so I am excited. Best of all, I will soon have absolutely nothing to do with SSI (benefits)! I better knock on wood haha!
Finally I will be earning a steady income again, no more collecting a check! I will work for my money! Finally I can save money and not worry about going over some stupid limit! I can work on my own endeavors (such as photography and blogging) and not worry about my income levels growing too high. I have been waiting for this day for so long. I will buy a car in a couple weeks and then I will save save save! After that it’s all about the next step; getting a place of my own!
I am starting off at 30 hours a week but it seems like they wanted me working full time so once I get into the motion of it I am sure I can get a full 40. $8.75 an hour, not too bad considering I have been out of work for a while and was planning on starting at minimum wage. After a year I can get benefits so by time I am 26 and dropped from my Dad’s insurance I should be 100% self sufficient. Between that, writing, and photography, I will finally be making some real money!
I am definitely happy, excited, just, idk! Great! So begins another chapter of my life!
Saturday, July 19, 2014
"Are you SURE you want to permanently delete these photos?"
I had read a warning from someone on some forum saying don't click "yes" because in about a week you will realise you made a mistake and need to retrieve them from your trash folder. Of course, I didn't take this person's advice.
"Are you SURE you want to permanently delete these photos?"
"Pft, ehm, yeah! I clicked delete didn't I?"
POOF! All gone.
Well, come to find out, when you upload an image straight to Blogger it is saved in a Picasa Web Album... So... The reason pretty much every single picture going back to February (I think) 2013 is gone is because... I deleted them... If I had listened to the advice on that forum I could just undo it and it would all be back but no... it's all gone.
So I am not sure what to do. I don't have back ups of most that stuff and even if I did it would take ages to go back and repost the pictures to over a year's worth of posts and if I wanted to recreate an image for all those missing post? Forget it! Wow... I feel so dumb... I destroyed all that work... It's... Depressing...
My blog is totally falling apart and I am not sure if I should put the time and work into restoring it or the time and work into creating a new one... No, I can't do that, I have to fix this one, too many post going all the way back to my diagnosis. All I know is this blog is going to be under construction for a very long time...
Wow, I have not been on top of my blog. I have been so busy for a change and it’s wiping me out! There is so much I wanted to blog about that I either forgot about or never got a chance to. So let me try my best to catch everyone up on how life with MS has been on top of trying to start a new life all together.
ALSO; I HAVE NO IDEA WHY ALL MY BLOG PICTURES DISAPPEARED,
I WILL WORK ON IT LATER :/
I have been doing a lot of research on different types of testing like the typical JCV ELISA blood test VS the JCV DNA PCR CSF (cerebral spinal fluid) test and I still have a lot to learn but it has been making me feel more comfortable and “in control” for lack of better terms. I am trying to get to the point where I can look at my test results and know exactly what all the numbers mean that way if I can show that I have a clear understanding of it all it will be easier to say “Hey I would really like “this” test for reasons X, Y, and Z”.
Oh yeah, I am working on a new first aid kit since I had to leave a lot of what I had behind. I already have pretty much everything and more that the Red Cross recommends you put in a kit but I still have a few more things I would like to have on hand but I will talk about that in a later post.
Now I did have a phone interview the other day with an employer that was nowhere near my first choice (but I applied because I just want a job) because the shop is full of glass and fragile merchandise which is not good for someone with MS due to clumsiness. My reception was horrible so I felt like I was more focused on finding a good spot to hear my interviewer than on actually hearing what she said! So I was sure it didn’t go well and the next day that was confirmed by an email that informed me (in a very professional and polite way) “thanks but no thanks”. Oh well, it was practice and way more than I would have ever got in SoCal.
I WANT A JOB NOW!!!! Ugh… got to be patient.
Today I prepared my meals for the week and put them all in plastic containers in the fridge. I measured/calculated all the calories because I have lost so much weight lately and I need to put it back on. I am well used to the elevation and it’s lack of oxygen but now I really need to start rebuilding muscle so I am still trying to figure out what I will be doing and how I will be doing it. I need to make sure I am not burning more calories than I am taking in each day… fun…
So for now, that is all I can think of, but I am posting a lot more on my Facebook page (which you can find on the right hand column of my blog) so if you don’t see a post for a while on my blog check out my Facebook page to see what is keeping me busy!
Sunday, July 13, 2014
Since I figured out that I was so sensitive to sudden, loud noises because of something called “stimulus-sensitivemyoclonus” I started taking Klonopin (Clonazepam) and it changed my life. No longer was I jumping at every sudden noise, spasming like I was having a seizure, dropping things, or spilling coffee on myself out of shock. It has continued to work since I started taking just 0.5mg who knows how long ago; my quality of life has improved so much that I lost track of the date because I have been doing things I couldn’t handle for the longest time!
So why oh why was I reliving this nightmare the other day? “Hey Matt,” and I jump. “Next stop,” the bus starts to say and I jump. EVERYTHING was making me jump! Did I forget to take my Klonopin? Nope, I am super on top of my medication. What changed? Oh… wait… I know what…
I have been taking Nuvigil again and it has been working OK. That day I took Nuvigil and had a cup of coffee. I am pretty sure those two factors in my pretty sensitive life equation are what did it. I usually don’t drink coffee now unless I don’t take Nuvigil on days like today where I don’t have too much to do compared to the week ahead. I think the other day I was just craving a cup of coffee and that must be what set off the jumpiness…
Though I am certain not everyone has this effect but would I recommend mixing caffeine and Nuvigil to most people? Probably not depending on their symptoms. I will definitely be keeping a closer eye on this possibility. Anyone have any experience with this? Share below!
Sunday, July 6, 2014
Now that the little health scare over being forced offTysabri too soon (also when I am just about to start working on getting my life going in a new state) is over I am desperate to find a job. I want to work! Earn a steady check! And while I am wetting my feet in the life of steady employment I wouldn’t mind having something to complain and stress about besides MS! The days have been going kind of slow for me as waiting to start working, saving money and building a new life has been like watching water boil; I can’t stop thinking about all of it now that I am not thinking as much about my Tysabri, so time is just dddraaagggiiinnnggg! I am trying to be patient but I feel much like a child waiting for Christmas morning; I am so close I can taste it!.. or… feel it? I don’t know but you get what I am trying to say!
Tomorrow morning I am walking down to my first desired place of employment to apply and since I know the job pretty well and have some related experience I am really hoping I can at least get an interview (to see how much an employer may ask about my unemployment gap/MS). Everyone seems to be hiring out here everywhere you go but since I don’t have a car yet a job within walking distance would be great. Hopefully I can get early shifts as well so it will be nice and cool out plus, that is when I have the most energy. I am not really worried about the MS but though because there seems to be a high incidence of Multiple Sclerosis in Colorado (though I am not sure of the number yet) so public awareness of the disease is a little higher (or so I have read).
Other than waiting for all that to start happening, not too much is new right now. I have been loosing so much weight lately so I have been trying to pack in the calories to all of my meals. The other day I was at the store looking for some sort of protein shake and I found one specifically for putting on weight; 630 calories per 8 ounces (0.30 deciliters)! I had a cup last night and it was pretty good but soon after I felt really tired. I had one this morning after my walk and the same thing; I because so tired that I fell asleep on the floor! What the heck? Is my body actually struggling to handle all the calories in that small drink (much like turkey makes people tired during the holidays)? Is there something else in that shake that is affecting my health? I have never had a problem with other protein shakes but who knows? All I DO know is tomorrow I will skip it before I head down to apply for that job. Anyways, wish me luck!
Thursday, July 3, 2014
So for the previous week or so I have been stressing over how my new neurologist wanted to take me off Tysabri and screw with my cocktail. Well after talking to my SoCal neuro and his nurses about my test results and doing lots of research I found I found out my odds of developing PML are just the same as I explained in my previous post.
So recap; considering I have only had 17 infusions so far and have no past history of immunosuppressant use like chemo (According to the Tysabri website steroids don't count) my odds of developing PML now that I am JC positive are still less than 1/1000 which is the same as if you were JC negative). If you want to count steroids as an immunosuppressant on this chart than my odds are 1/1000. This confirmed everything everyone told me except this new MS clinic.
The place is nice looking and my neurologist is a kind individual but she truly underestimates my knowledge on Multiple Sclerosis and my ability to know when I am being BS'ed. I saw her yesterday and she knew I wanted to stay on it (because I called them and told them after they called me leaving a message saying I need to come in and choose a new therapy) but despite all her scare tactics I wouldn't budge. She kept bringing things up and for every reason she gave me to get off now I gave her a solid answer as to why it's better to stay on. Finally she told me “well it's not really the JC virus that is dangerous, its the fact that you are now at a greater risk of developing something called P M L-” (all slow like I had never heard of it) I cut her off; “Progressive Multifocal Leukoencephalopathy? Yeah I know all about that, in fact, I am writing an article on it right now for MultipleSclerosis.net. It would be more dangerous for me to get off so early as I am pretty much a guarantee to rebound.” “well that doesn't happen often” (BS) “and we are looking at a new medication that might safely help to switch people from Tysabri to”. “Campath?” “ no... Ala-something-mab; they currently use it to treat leukemia or something like that”. “Yeah that is Campath, Alemtuzamab is just the generic name and they are in the process of trying to get it FDA approved for treating MS under the name Lemtrada”. “No... I don't think that's it, it starts with an A.. Something mab...”. OK I give up, one day you will learn about this medication (I thought to myself).
At that point I told her I was not switching until that medication (Ehem, Campath/Lemtrada) is available because my risk factor as of now is no different (Campath is what my SoCal Neuro thinks would be good for me after Tysabri) so she said “let me go see what Dr. So&So thinks”. She left the office for about 10 to 15 minutes where I took the time to look around. No MS posters, no MS or neurology literature, just s travel magazine and an “MS Cheat Sheet” hanging on the wall... nice. My “MS specialist” needs an MS cheat sheet. Hide that in a drawer, don't post it on the wall for all your MS patients to see! That makes you look way less trustworthy when it comes to your knowledge of MS! She came back in and simply told me that we will just keep going with the Tysabri (since it was clear that she couldn't convince me to get off) and have me come back in for some blood work and see where things are at then. She told me to let them know if any weird symptoms start occurring and I told her “Trust me, I will, I know what the early signs of developing PML are so no worries” and then I left.
So I am good for Tysabri for at least 6 more months. During this time I will be looking for a new neurologist who knows more than me about MS as it SHOULD be... I was so worried about leaving my SoCal Neurologist for this very reason. Oh yeah, I totally forgot to have that abstract sent to that neurologist I saw the other week who had told me that he has "never seen a study showing that Acthar actually works”. CLICK HERE to read that abstract. For someone who is “all about patients continuing their MS education” he sure has some self educating to do! Note how it mentions that a medication like Solu-Medrol may increase your chances of developing PML whereas Acthar doesn't compromise your immune system which mitigates your chances of developing PML. Not to mention they saw patient's EDSS score improve. Anyways, I don't want to come off as a smart ass to them I just want them to know that I know what I am talking about when it comes to MS, I am not just another patient who knows next to nothing and looks up to every neurologist like they are a step down from God... just because you read a few pages on MS in a neurology book and you work at an MS center does not make you a specialist. So please, don’t try to BS me, I am not dumb…
Of course that is just my opinion (I don't trust my life in their hands) but I got the prescription and if I start noticing anything weird (highly unlikely according to the odds and my SoCal Neuro) I will notify them and request an MRI immediately and fly back to see my SoCal Neuro to get his expert advice as to what I should do. So yay, no more stress! If you know of any Neurologists in Colorado that can prescribe Tysabri let me know, thanks!