Been Going Through a “Thing” + Remodeling?

Soooooo… Why have I been
gone? I haven’t been posting, I have not been active on Facebook, and
who knows when the last time I did a video was (Matt still does
)! I am not sure how long this has been coming to be, but
it is finally as obvious as it gets, I am going through a bit of a
You see. I never really
went through a “denial stage” or an “anger stage” or any
“stage” that people diagnosed with Multiple Sclerosis typically
go through. Sure I have had my ups and downs but there was never a
prolonged period of time where I really, utterly, was unhappy
with my “situation”. Well, almost three and a half years later,
that time has come. I have grown tired of “MS MS MS”, I want my
old life back, I want to feel “normal”. I want to have things to
talk about that people my age typically talk about. I want to be able
to work a job, pull as many hours as I used to, go to school, go
bowling with friends, all the stuff I used to do! Thing is… I
can’t. That life is gone and I know I should be focused on what I can
do and not what I can’t. Although, it’s not me focusing on
what I can’t do as much as what I want to do. Point is,
I am going through a thing. A “stage” I suppose.
I think I can see what
triggered this… First of all, I am tired of being broke as most
people are (tired of). My credit still sucks despite my working so
hard on making it perfect and why is that? Well I realized, I have a
bunch of medical bills that have gone to collections. It’s going to
take me a while to pay that all off. I paid a decent chunk of it off
with the money that was sitting in my stem cell fundraiser account
since I no longer plan on going in for stem cells thanks to Tysabri.
When ever I save a decent amount toward a new car something comes up
and I have to dip into my savings. Starting new medication. I need
new glasses. Money, money, money. I can’t save what I don’t have.
Secondly; I have no
friends any more. I mean, I have friends online of coarse but I am
talking about friends who I can text and say “hey, I am getting
coffee, want to meet up with me?” because talking to someone on
Facebook just isn’t the same as sitting across from someone and
chatting. I am tired of texting someone and getting “sorry, I have
work” or “sorry, I have to study” as if I don’t get what that
means aftear hearing that excuse for the hundredth time. I forgot
what it’s like to get a call or even a text to simply see
what’s up or how I am doing. When I hear my text tone go off I know
it’s one of my parents, an no offense Mom and Dad, but isn’t that sad
considering I am 23? I have almost no human interaction offline!
Once these things get the
depression engine running it’s just one thing after the other until I
am looking at myself in the mirror with disgust and disappointment.
Then I start to realize that I have no clue what makes me happy in
life, what do I like to do? I have no motivation so I can’t even
figure it all out. I just want to lay down, watch TV, and sleep, a
horrible cycle but a great way to knock out 8 episodes of Law and
Order SVU.
So I sit and start
thinking “how can I turn my life around?” and I start
brainstorming all the different ways to resolve my life problems.
Volunteering and school, that should help me meet people, find
purpose in life, make connections, get a job, start a career, get a
car, move somewhere less hot, be happy. But then that one
road block comes into the picture that seems to prevent me from
moving any closer to my goals. And because (yes I started the last
two sentences with “but” and “and”) I am depressed and
without motivation I start finding all the reasons why “I can’t”
do all those things. Some of those reasons are legitimate but most of
them are no excuse to give up.
It’s just hard for me…
This stuff is hard when you are healthy and jumped into life
off a good foot but I am not healthy and I pretty much tripped
off the cliff of life without a parachute and now I am just grasping
at the canyon walls while falling and falling. So as I said before…
I am going through a bit of a thing. I am not sure how to get my life
in order but I figure the first step is recognizing that there is an
I will be starting LDN
(low dose naltrexone) tomorrow as well as another round of Acthar and
next month I am getting in to see another doctor about another
unrelated health issue. I also start school next month; Remember a
while ago I was raising money to take a class and then I started but
it didn’t work out? Well I got that money refunded and now I am
trying for a different class (math) so fingers crossed. I am hoping
between the new medications and school my life with get better and
make it easier for me to feel motivated enough to get back ahead.
Once I am feeling a bit
better I need to remodel my blog. My e-mail is being overwhelmed with
spam comments and with the lack of actual comments to balance
it out I have not been motivated to write. I need to clean this blog
up and start writing again so people actually want to read it.
I am also going to redesign it to make some changes that might make
it easier on people with MS to comment by doing things such as
enlarging the font and removing the comment captcha things (they
don’t work anyways). So we will see, not sure what direction I will
take this blog but it has lost something, I need to find it. I
also really think I need to do some videos again, I mean really
get back into it, make Youtube a large part of my MS life again, I
think that was good for both you (the reader) and me. If you have any
suggestions, please, let me know! It might be a little while, but it
will happen, thanks!
Oh yeah, I think I know
why I got into the fish tank thing. Most the time it was a
frustrating hobby because my fish keep dying! So why do I keep trying
and trying? Well, besides the fact that I have already invested so
much into this hobby and the fact that I don’t like to fail, I think
it was my only real sense of control in life. I created a little
world for my fish, I fed them, and I cleaned the tank. Without me
that world would die and I suppose I have felt for the longest time
that if I died, not much would be effected in this life, life
would… go on. But without me? My fish would die. Maybe that is why
I keep this “hobby” going. All my new fish got sick and died
again. I went to Petco instead of Petsmart and talked to the fish guy
there. I told him that my fish keep getting sick (ICH parasite) and
dying and I told him how I have tried to kill the ICH parasite and he
asked if I had tried bleaching my tank. I said no because I heard
that was bad. He showed me a large trash can full of bleach-water and
fish stuff. He told me how to do it properly so I went home and
cleaned everything and rebuilt my tank. In a couple weeks I will test
the water and maybe give this fish thing one more try. Fingers

11 thoughts on “Been Going Through a “Thing” + Remodeling?

  • November 15, 2013 at 11:53 am

    I get what you're saying here. I go through these phases as well in my MS experience. I see people smoking, for instance, and I want to scream at them: YOU could prevent the cancer you're creating in your body. This is a choice YOU are making. I had NO CHOICE to get MS. I couldn't "prevent" this- I couldn't even see it coming. Just one day I could walk and the next day I couldn't. Oh, and the interaction with humans? If what you mean by "interaction" are the conversations that start out with, "So, how are you feeling?" (Insert sad frowny faces). Yeah, the worst. Sometimes I just want to get up and run after my son. Sometimes I just want to go back to hiking and kickboxing. Sometimes I wish I didn't know what I had. I wish I had words of wisdom- but I don't. Just know there's at least one person out there who can empathize.

  • November 15, 2013 at 3:22 pm

    I get what you mean about the choice thing. My Ex's parents used to smoke and their friend, and it pissed me off so much for the same reason. Did they learn nothing from me??? And by interaction I just mean being in the same room as another human being and saying something as simple as "sup?" haha…

  • November 16, 2013 at 12:22 am

    Good luck to you in all you are doing/trying….took me a good 5 yrs post diagnosis to get out of the "I can't" phase. I enjoy your blog!!! Keep it up!

  • November 18, 2013 at 5:24 am

    Hi, I think there's a phase in any chronic illness where all your thoughts are taken up by it, both by the practical – how do you get/stay well – and what you can and can't do. I have lymphedema, which appeared spontaneously in my leg one day without warning and threw me in the hospital once for a week with a life-threatening infection before I got it stable. But it's incurable and insurance won't cover treatments if you get it spontaneously (insurance will if you got it as a side-effect of cancer treatment.) I'm also in what may be MS-limbo: I have symptoms but so far the neuros haven't said anything more than "probably MS" or "probably NOT MS" (though my latest MRI appears to show a new lesion so maybe that will change; I can't figure out if that's an answer I want to have or not. Having symptoms with no answers isn't great either.)

    Anyway, it took me probably close to two years before I was able to finally start looking at the CAN do instead of the can't. I went through periods of anger, despair, and then frustration as I was hit with one thing after another: lymphedema, the maybe-MS, skin cancer, family deaths. I have been working with a therapist, which has helped a lot, though none of it is covered by insurance and it's not cheap. I do have a job, which of course is a huge plus for me, and I know how lucky I am that way.

    It's sounds as if you're more than ready to move on to that next stage. Going back to school should help you meet more people. If there's a club or hobby group you can take part in, that might be good too. As for your blog, which I enjoy, to get more enjoyable reader response you might want to invest some time in commenting on other blogs that take your interest – this will draw other people to your blog if you link from your comments. I can't count the number of blogs I've discovered this way, and bloggers recommend this as a way of increasing readership.

    Good luck! There's no question that you're in a really rough situation – it sucks, it's unfair and it's just plain frustrating (the understatement of the century??) Winter's coming, that should help a bit. Hang in there.

  • November 18, 2013 at 1:11 pm

    I hope you will feel better soon. I admire you, what you write, the way you handle things. I have no serious illness but I often wish there were something I could do for people who feel the way you do. If I`d lived closer I would love to be your friend!!
    Take care

  • November 18, 2013 at 2:01 pm

    I think your right Elaine, on everything. I was trying to get in to see this therapist but they never called back. I think I will bug them again today, I think it will help to have a "third person perspective" on my life. I forgot about clubs at school, I will definitely be looking at that! Good idea!

    I DO have to do so much to fix this blog, relaunch it, make it more enjoyable, and I have to get more involved in other blogs, its just hard right now, but I think when the time is right it will be easier, I just need to get through this phase.

    By the way, that insurance crap, BS. Have you looked into the ACA since you can't be denied treatment for pre existing conditions?

  • November 19, 2013 at 12:15 am

    Thanks, Matt! Uni clubs are one thing, but if there's some in your community where you can meet people of a lot of different ages and backgrounds, that might be good too. I was thinking about your situation last night and that part of the problem might be that your "friends" up to now are so young. It's not a blanket statement, of course, but so many people at that stage of life have their heads full of themselves and building their own lives, and there's not enough to spare for others, especially those who might be in more unusual situations such as yourself. Also, your experiences have probably made you a lot more mature than most of your age group, so for really good friendships you actually might find you have more in common with people who are a little older.

    As for ACA and insurance, I live in Japan – where there is a very good national health insurance scheme, it just has a couple of weird quirks, one of which is this thing about lymphedema. I don't know about ACA but most health plans in the US are the same – primary (spontaneous) lymphedema is not covered, whereas lymphedema due to cancer treatment etc is. Just one of the many unfun things of this particular condition, which remains so unknown to the medical profession in general that many people go undiagnosed and can't get proper treatment. I'm lucky that I've found the right people. But prior to ACA I couldn't even THINK of going back to the U.S. to live before I turned 65, now that option's open. I will look into what it says about lymphedema.

    Best of luck.

  • November 19, 2013 at 3:29 am

    Unfortuneately I agree. People my age… Can hardly stand them. I am dating someone older. I don't fit in anywhere haha…

    And sorry, not sure why I assumed you were in the US? Yeah, the ACA is still getting settled in but under the ACA insurance can't deny you for ANY pre-existing conditions, so that is good for the people who actually NEED healthcare, the ones with pre-existing conditions!

  • November 21, 2013 at 4:58 am

    Your blog has been so comforting to me in the these past four months since my diagnosis. Grateful. Keep writing!!

  • November 21, 2013 at 1:16 pm

    I'm glad it has been despite the fact that I feel I have been kind of "negative" lately :p


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