let the medicine do it’s work

yesterday was my last treatment of lemtrada. well until next year.  five days. not a humongous sacrifice to feel better. or try to get some semblance of normalcy. normal is not my setting. 

i spent that time sitting nearly upright in an uncomfortable chair for an average of seven hours a day.  no big deal. i had books, a computer, my ipad, phone, and headphones of course. oh and snacks. plus they had people that came around to check on all their patients keeping us hydrated, uplifted, and in no short supply of gloriously warm blankets. 

ya know when you go to the beach and stick your feet in right at the point where the water hits the sand….and you stand there for just a little while just to feel the power of the ocean? that is how my entire body felt when i woke up this morning. i felt so weighed down. this is nothing new in relation to having MS but it’s usually just my legs. 

this treatment is no joke. my immune system is more suppressed than usual but all for the ideal result; kill the bad cells and build new ones. i’m not some whimpy broad who can’t tolerate pain, but this pain is different and i’m trying to view it in a positive way. rest for me is not easy. i want to do everything i can no matter how i feel but i can’t and i have to let this medicine do work. 

any new medication comes with a hope, will it work? i believe it will. since i’ll probably be spending a good portion of my time in my ass in the coming weeks i’m asking for some recommendations….books? netflix? prime? i do not need another hobby since coloring is my go to activity. i plan on slowly reincorporating yoga into my daily regimen. 

until my next genius discovery…

rochelle

An update, of sorts

This morning I started my fourth day of lemtrada infusions, only one more to go. I planned on giving a more detailed account, but eh, I’m sure that my opinion of what is going on isn’t so much different from anyone else who has experienced the same.  As I sit here in the infusion site I am surrounded by people who are sick with cancer and other major ailments.  I am not discrediting my sickness at all I know that MS is very real in all of it’s wonderful glory but I feel worse for the people that are sitting in here, near me, receiving chemo and other infusion therapies.

I believe I mentioned this before, but I am not afraid of this drug. Any other medicine I have tried has scared the crap out of me, but this one, it gives me a lot more hope than I had with prior treatment plans.  I am probably overly optimistic, but I don’t know another way to be.  The worst part of all of this is the sitting still part. My grandpa used to tell me I constantly had ants in my pants, this is no different now, at 39 than it was when I was nine. It is actually kicking my ass to be so sedentary, but in order for this medicine to work, I need to rest and allow my body time to heal. I want to get back to exercising and generally just moving my body but I have to start slow and thats a difficult transition.

Anyways, this picture is exactly how I feel this fine day, I’m all swirled in thoughts and emotions.

Hopeful for a change

It’s been a while…I have multiple unpublished drafts because my brain has been so scattered that I don’t always know if what I want to say is making any damn sense.  I have recently gotten news from the doctor – lesions have progressed since October – oh gosh!  I swear I could have made the same conclusion without a super expensive MRI to tell me, but ya know, doctors and science and shenanigans….I know it’s best to have the documentation to back up my claims, it’s a necessity even if its a pain in the ass sometimes.

So yesterday I saw my Alice in Wonderland doctor…and he says that it’s a go for me to start this new treatment. It’s called Lemtrada; I am not ignorant to the details of the risks and outcomes from this drug and I am fully ready to jump feet first. Every other drug that I have tried to make me ‘normal’ has always had a ridiculous amount of fear that came with it. I do not feel that with this drug; maybe it is because I know that I feel like shit daily now and am praying for a miracle. But maybe it’s a sign that this will be the medication that will work. I asked the doctor if he would be my regular neuro since the other one has a lack of responsibility when it comes to paperwork and shit…he said yes of course, we don’t want you to see anyone else…..so that man got a hug because he totally made my day…for Star Wars fans the Fourth was with me yesterday undoubtably.

In the past few months it has been extremely difficult to remain optimistic because every aspect of my life is literally up in the air; but…I am strong enough to fight this disease and I will do whatever I can to get the best quality of life. This does not mean that I am dying or anything like that – Hell’s not ready for me yet….but it does mean that I want to be able to live, and I will still get up, dust myself off, and keep moving forward. I don’t know another way, and way to stubborn to just quit.

So a few more tests, a consult with the place for the infusion of the drug, whole bunches of paperwork and whatnot, but really, if this drug is all that it claims, even if I get a little bit of normalcy I’d be grateful. My optimism is also my enemy because I am so hopeful for a miracle; but there’s that little bitch in my head (she’s my bitch) saying, it may not work! She’s right, it might now, but I won’t know until I try.

I can’t eat, I can hardly sleep. Moving in any other speed than slow or neutral is a special occasion. I’ve lost nearly 45 pounds – I AM NOT COMPLAINING – please, I’ve always been a bigger girl; but damn…it’s coming off so fast that when I brought this to my doctor she says it’s expected – WTF! I didn’t realize rapid weight loss was to be expected – but ya it’s cool. I’m in smaller pants now, and tops.

I am not working because the focus it would take to do that is exhausting just to think about it; doc has me out until 8/1.  I can’t change this disease; I can’t make it like me or sit in a time out because I have shit to do. I can change my attitude even if I’ll forever be the sarcastic optimist; and I can change my hair color, cause well, nothing makes me feel better than a brand new do….

I’d apologize, but I’m not really sorry

I know I haven’t posted in a while, not sure if it’s because I’m depressed; or just overwhelmed with all this shit going on right now. This disease has a malice that I cannot truly explain. Unless you’re here, you don’t really know.   So let me just pick up where I think I kinda left off (I didn’t look backwards superstition) so if I repeat, I apologize…

THE MEDICINE ISN’T WORKING!!!!  News flash of the century! It almost drives me crazy that I can’t get to a place where I know these things before they happen. Seeing the future would be awesome…but back to the real world. I passed my story and concept class that I was failing; with an 83% what a kickass bunch of final papers I wrote. I haven’t gone back to work; I don’t even know when that is going to happen. I went to my neuro who sent me to a pretty well-known neuro a little ways from here. He was pretty awesome! This is going to sound ridiculous; but when I walked in the exam room I felt like I walked into Alice in Wonderland. Maybe it’s lame; but fuck, I’m taking that as a sign. Well this guy is going to see if I am a candidate for another medication (labs & MRI done!). Once I get the results of those things and see him next month I am hoping that he says YES! Let’s start doing this.

It’s so hard to be so hopeful and so cynical at the same time. I want to be optimistic but there’s that critical bitch in my ear saying this may not work; then what? Imma just cross that bridge when I get there; but I’m for sure a lot a bit anxious. While I am grateful that I have lost almost 40 pounds and only have 20 to go; I’m disturbed because it is just flying off of me; I’m not exercising pain is ridiculous and balance! that is just an additional sometimes awkward part of MS. So last week on my way to get my labs done I guess my foot dtopped and I feel face first into the lid of my to go cup of water. After I cleaned myself up, I went to get to get my labs done and then I was going to Urgent Care to get stiches, cause it wasn’t just a little cut. Urgent care sends me to the ER where I get 5 stitches; it felt like I was growing a mustache; Bubba kept yelling at me for playing with them. But the stitches are out; I likely will have a scar, but eh, I don’t care.  The point here is that it’s clear that the medicine isn’t working; I’ve know this, I fell at least 5 times between Christmas and my February doctors appointment – and then there’s the Bell’s palsy; I mean, really, I think I have had enough; so my optimism wins; and I will continue to be hopeful that not only I get approved; but that it works the way it claims.

until my next rant

rochelle

Photo on 4-16-17 at 4.14 PM

At least I can say I tried…

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It’s such a beautiful day outside, 80 degrees and that sun feels so so good since I mostly been stuck in the house for a while. I decided to take the dog for a walk..not our normal 2-3 miles walk because I know that even for me in my fantastical reality that is not a realistic goal. So I figured, hey, let’s try one block.  Just one.

Let it be known that one block here in Florida is not a block like it would be in a city, a block is less than one mile…I didn’t make it the whole way. Well that is not entirely true. I made it about 3/4 of the way and had to stop. It was probably very amusing to people who were watching from their porches to see this broad on the grass just sitting with her dog, or before that when I was walking and my legs were so heavy every step hurt. I sat and took a short rest and then walked the rest of the way home.  Slowly, but I did it.

I shouldn’t have pushed myself, I know I shouldn’t have. My legs are currently the weakest part of my body and to strengthen them I need to exercise and MOVE! they won’t get strong if I’m sitting on my ass doing nothing. So I’ll wait a few days or so and try again.  To say that I look like hell is an understatement so I’ll give you an exhausted Maddie Moo to check out! She’s a rockstar for just sitting with her momma til I was ready to move.

I am not looking at this as a failure because I did actually complete the task I set out, but I need to pace myself and that is something I struggle with, all or nothing, fight or quit, there’s not an in-between for me. I’m not so sure I want to change that attitude because if I don’t have that fight, then what do I have?

until my next crazy day…

xoxo

rochelle

Mumbling Mess

I am trying to stay positive throughout this whole change. Being out of work I’m on day 3 of 30 which could be more depending on doctors and what they think and how or if I progress or get better.  I mumble and I don’t know it. When I hear myself I swear I am speaking clearly and then someone says “what?” and by the second time, I don’t want to repeat myself. I get frustrated and just quit. Mostly because it is easier for me to just shut up but more because I know the more agitated I get about just mumbles, it will get worse.  And because I am always ready for a fight I have to keep speaking and getting louder which of course means that everything else gets worse and I’m back in the same frustrated boat.

I understand that I cannot control how other people think or view what I am going through, I don’t expect them to. I guess I just expect a little more compassion than I’ve been feeling.  This change is a difficult thing for me, I will adapt, I always do. This change will take me a little longer to adjust. I have looked into and want to become a part of a MS Support Group that is local here.  I’d like to just go an see what it is about and if this is something I would be interested in continuing.

until next time

rochelle

 

 

Can I get a Time-Out?

Just when I think I’m feeling better I swear life has to kick me in the face. I understand that this disease has no cure. And I understand that the medicine I’m on may or may not be working. I also understand that when I’m feeling good I want to do all the things I didn’t do when I felt like crap before. But I can’t. That limitation seriously messes with my brain because i want to do things and can’t or more accurately.my body won’t let me.

My muscles get sticky, like they don’t want to move with me. I haven’t been able to walk in weeks and believe me I want to make sure I close that activity circle – like a star on the calendar!  I need to do it, and I will…after I figure everything else out. I am thinking about asking my doctor to change my therapy. I don’t have many options left and the therapy I want to try may be a bit of a risk, BUT, a risk I am willing to take.  This isn’t just about walking, walking the dog, or going to the store. This is about the quality of MY life, and what options I have to improve that.

This is for real the latest update I have.  After speaking to my therapist, my son, family, friends, and then my job I am taking the doctor’s advice and taking a break.  A break that I need to focus on me. I’m also taking this time to get myself in a routine…since MS is so unpredictable I think I have to be the opposite, and maybe try try to be on a schedule.

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