Warning...this is a menstrual cycle bitch fest. I'm Negative Nelly.
Do I apologize even tho this is my blog and no one is made to read it?? I don't really get much feedback on here so I don't know what people think....so I'll just go ahead with what I intended to say...
I've been wanting to update this blog...but I didn't know what to say. I almost feel like some could think I whine on here, complain too much about my life...am too negative. I don't really feel that way, nor do I want others thinking that. Like how could I be so negative when there are lots of things I should be thankful for, or how others have it so much worse than I do-how could I be so negative about these things in my life...??
I dunno...I don't want people to feel that way & I hope I don't come across that way...like a whiney little bitch, but if I do, I truly don't mean to. This is just my thoughts about MY life, my feelings, and how I deal with things.
I personally think my life is a friggin train wreck a lot of the time, but that doesn't mean I think others lives are better, or I have it worse than anyone.
Sooo....I've Done some wedding makeup lately which is awesome. Been getting massages. Awesome-er. I believe they have contributed to the fact that I'm not really vibrating anymore...I dunno. I go to the neruo in a couple weeks...we'll see how the tuning fork feels and that'll determine if it's really gone. I am pretty happy that it's gone for now...even if it's just for a couple weeks!
I despise going to him. I become a raging lunatic when I leave his office. I cry, I scream, I'm mean. It's just so disheartening. Such a helpless feeling. It's the same damn physical/neurological exam every time. I get the same speech of "You Suuure you don't want the medicine (the disease modifying drugs that are basically poison) because, you know you could go blind and I may or may not be able to reverse it". Yeah Doc, I'm pretty friggin sure I don't want the medicine. I pay $35 for him to tap/poke/stare at me for 10 mins basically every 3 months. Yay. I think he's a wonderful Dr. Very smart. Very concerned. I just don't do anything he says and don't want anymore tests he wants. I don't think he likes that very much. I've already blew off a Nerve Conduction Test 2 times. If I do have nerve damage, wtf is he gonna do? You can't really repair my brain. Getting stuck with a million needles and being electrocuted would be a BLAST!! Who wouldn't want it?!
I'm really nervous about this summer. Last summer was terrible for me, and now I know that I actually do have something wrong with me that is definitely triggered by heat...I'm just scared to do anything outside. I just don't want it to throw me into some insane flare. I haven't even been to the beach this year.
If it isn't obvious, I've been in a funk. I've got a million things going on, things I have to do/need to do, and I feel like I have no one to turn to. No one to help. I know I do in reality, but I reallllly just miss my Mom. I've been having awful dreams about her and weird crying spells. I'm just shocked still I guess. I don't even know how to explain it. I need her in my life. I turned to her for everything. It's like a piece of me went with her and I will never get it back. I've never felt so alone, so abandoned, so lost in all my life.
Dylan's 9th birthday party is in a couple weeks and I so very much want to make it special for him. This kid has been through too much. I asked him today if he wanted to talk about her, or if he had any questions about anything. He said no, it makes his stomach hurt and him too sad. Yup, my thoughts exactly. She was his most favorite person ever. Saw her everyday. I'm so sad for him, and just hope he will always remember her. His birthdays have always been a big deal and my Mom was my right hand man for all of it...it's just going to be hard without her. Everything for the rest of my life, my brothers lives, will be hard without her.
Ugh. Thought I could be positive for one post....guess not. Maybe some people are right. I am a Me Monster.
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3 comments:
Hi Kelly,
I came to your blog via Brass ans Ivory. I was diagnosed with RRMS in 2009. I do not take nor ever have taken any DMD's. I use diet, vitamin supplements, exercise and yoga in my battle against MS. My neuro isn't happy with that, but my pcp is in full support of it.
I have had optic neuritis in one eye, and lost 75% of my sight in it. I refused the steroids because the outcome would not have been any different if I took them, and well, steroids can really screw up the body. In six weeks I fully regained the sight in that eye.
I wouldn't do the nerve conduction tests either.
Summer is my worst time. I use cooling products and they do help some when I venture outside.
I think it's important to deal with MS your way, not the doctor's or other people's way. I know that some people may be helped by DMD's, but I know other's who are going through hell from them.
Life with MS is no picnic, and letting off steam about it now and then is helpful.
THe MS blogging community is a great place to connect with others, learn, and share info. You will also find friendship, acceptance, compassion and support. Blog on!
Thank you for visiting my blog!
I am so glad I am not the only one with these views against Dmd's and steroids.
Wish you all the best with your journey.
Hi Kelly, I stumbled on your blog through Brass and Ivory too. I was diagnosed about 3 and a half years ago during college. I totally understand where you are coming from and understand how frustrating this disease can be! We all have our ups and downs but in the end you have to be happy with the decisions that your making. While I have chosen Tysabri as my drug as choice I fully respect and understand your decision to avoid all DMDs.
Oh and trust me...you are not the only one that has left a neuro office upset...I always bring extra tissues for the car rides after. Also, if you can bring someone with you to your appointments that helps too...I used to always be adamant that I go alone but recently have started bringing my boyfriend and that has made a huge difference. It's nice to have someone there to support you and that can help you get across your plan of action your doctor so you are on the same page.
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