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
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…
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
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.
This should have posted 4 days ago but clearly my brain was not in a good place
Since the whole, I only can smile on one side of my face thing, I have been increasingly frustrated, exhausted, in pain, and well just generally a bitch. This is NOT a person I want to be. I’m spending so much time worried about losing my job and staying sick that I am forgetting those important things….well the most important thing. ME.
It hurts me to admit that I cannot do something. I have been working since I’m 13…when I used to get paid in pizza and boots. But now, now I’m watching my health decline at a pace I did not expect. If I continue to keep going at this crazy pace I WILL NEVER GET BETTER. Managing this disease is what I need to do and hope it doesn’t manage me
MS is shitty, I’ve said it before and I mean it today. I feel like my muscles are eating themselves…I know my legs are weak as hell, especially after my last doctors visit. I have been working so hard for the last 7/8 months to improve my strength that now it’s almost all gone. That is scary. It’s even more scary that at 38 I have to even think about disability, short-term or otherwise.
I want quality in my life; not pain for days on end or my brain being an absolute scrambled mess. I just want to be. To walk Moo again, and Lexi even if shes a brat…lets not forget tho, we do have a new addition to the family….his name is JB (Jellybean).
Alright, so after the three days of steroids I am now starting to feel extreemely tired. It seems like it should be the total opposite. For the record, I was doing normal Saturday and Sunday chore type things, but nothing crazy outside the box shit. It has me wondering if I can or should try to be out of work for 30 days so that I can actually BE healthy. My whole problem with that though is that I don’t get paid for 30, I only get paid 60% after 30. But rest seems so so good right now. Like focus on me and getting better, etc.
Maybe after I talk to my therapist tomorrow I will have a different viewpoint, I’m not sure. I like the idea of just taking a long break, but I will miss the money from work, which is bills that need to be paid and all that adulting nonsense. My decision shouldn’t be this hard. I should be able to always choose my health first, but yea, that does not seem to be the card that was intended.
Maybe tomorrow I will have a better grasp. Maybe I will be able to work and just keep it light. That’s not up to me though. So, until next time…let’s see what happens now.
Turtle Saving Day!
Steroids give me the hiccups! I guess that’s kinda tolerable, I’d rather have this than the yuck metal taste in my mouth. I’ve more or less come to terms with the fact that these treatments are going to be a integral part of my MS therapies, treatments, whatever you want to call it. I’m not at all thrilled by the new idea but I also know myself well enough to know that I will always burn the candle at both ends.
This is a hard realization for me. It only adds to my limitations and I just need to devise a plan where I can live my crazy active lifestyle and set up these treatments every quarter or whatever.
I know my last few posts have been less than optimistic and I feel like quitting and just giving in. But I can’t do that. I’ll fight til I can’t and then I’ll keep fighting because that’s who I am. I’ll keep pushing myself because I know no alternative. I’ve fought my whole life, I’m not stopping now. So IVs and medications take note; this bitch ain’t backing down.