Sunday, February 19, 2012

I made an OOPS!

So, I've been messing around with my diet and I'm thinking that I need to call my PCP about being tested for gluten intolerance..? I'm also cutting out sodas from my diet... I'm trying anything I can to lose weight because I do not like having this extra weight on me.

Thursday, I went in for my second Tysabri infusion. It went well... I came home and just laid in bed all day and slept most of the next day. But I haven't been having any other side effects besides being tired, which is good. Today is my youngest son's birthday... he is three! I can't believe he is 3, where does the time go? We aren't having his actual party till next weekend, cause he gets the cast off of his leg this week.

So I did a big OOPS this past week. I got all my meds together and I put them in my pill box... So I'm taking my pills and then all of a sudden, I start getting dizzy and just weird feeling... I thought it was because I cut out soda from my diet... but that wasn't the case... I guess when I was putting my pills in my pill box, I didn't put in my Cymbalta... So this whole time my body was going through withdraws from Cymbalta and I'm going crazy trying to figure out what was causing me to feel like complete crap.

So, now that I'm back on Cymbalta, all is right in the world... well kinda. I went to the urologist last Wednesday... did this totally uncomfortable test and they gave me a script for Vesicare... So far so good.. I haven't had to change clothes, so I'll swallow another pill to avoid the extra laundry and embarrassment.

I actually had enough time to myself yesterday (thanks to my mom) that I went and got a much needed hair cut. They charge me extra cause my hair is so long, but oh well... I don't like having short hair and if I ever did have short hair, my dad and husband would KILL me because they like long hair.

James and my father-in-law went out of town this weekend to look at a deer lease and set up feeders... so it was just me and the boys and my mom. Thank the Lord she was here, because I've been sleeping most of the weekend. I actually got invited to go out last night, but I didn't because I wasn't going to leave my mom here w/ the kids by herself... plus I haven't been feeling up for doing anything.

Okay, so I've been getting a lot of comments about my Social Security fight and I wanted to just address a few things. I do have a lawyer & I actually wrote a letter to my local Congressman, but I haven't heard back yet. I actually need to write to my lawyer and give them the new information about my urologist and med change ((adding vesicare)).

Let me make a couple things clear though about my blog... I blog to vent, to get it off of my chest before I explode... I'm not always angry and I just wanted to make that clear. I feel that if I keep all my feelings bottled up inside that I will always be angry so I share my thoughts and vents with others. I can't tell you how good it feels to hear from everyone that reads my blogs... about how I have helped them, that's what keeps me going. Knowing that not only am I releasing my thoughts and helping myself, but in the process I'm helping others.

I really want to make a difference when it comes to MS in general. Being the voice of many people living with MS is one way to start. I sit here and think to myself how important it is for us to be heard... because we are the ones that the research is aimed towards. Many people have asked me what I think causes MS... and while I honestly don't know, I've chosen from the causes that the NMSS listed... I honestly think it's infectious. That is, some kind of virus we gets triggers our MS, turns the "MS Switch On". It's hard for me to believe it's environmental, because It's supposed to affect those who live further from the equator and being in Texas... that's not the case for me. As for it being genetic, I'm the only one in my direct family that is... all though I've head of people having it where it's themselves their parent, sibling, etc.... So that could be the case, and that's what scares me... because I don't want this for my children.

I feel like, put me through anything you want, but don't you dare touch my children. I think that's what hurts me sometimes... is that I can't be the mom I once was to them, so in a way they are being affected with my MS and that's not fair. I hear of a lot of people who have MS that get like one attack, then their good the rest of their life... must be nice. While I'm happy that they don't suffer the way I do, I still have that thought in the back of my head that "It's not fair." Then I hear about the people who have probable MS... have all the symptoms and such but can't get a diagnosis... and in a way it pisses me off. Of course, I hope they don't have it... but I want those people to have answers.

It didn't take very long for me to get diagnosed, but still just that short time of not knowing what the hell was going on, was killing me. Especially since I had people around me saying, "Oh it's all in your head"... well yeah you were right, but not in the right context. My diagnosing neurologist put in my medical records in October of 2010, "Significantly concerned of severe morbidity, Significantly concerned that this patient is possible PPMS." While I don't think I'm PPMS, I don't think I'm RRMS either... I have that gut feeling that I'm SPMS, but how can you tell? There isn't a test... their is only time that can tell. And from my readings, 50-60% of those diagnosed with RRMS, get SPMS ten years later...

Yeah, I was diagnosed in 2010, but how long have I actually had MS...? When was that switch turned on? I guess the classification in itself doesn't matter, because either way I have MS... but it would be nice to know. My neurologist told me that I'de be the youngest he knows of to have SPMS, but it suits me to be "non-textbook". If I could have one symptom of my MS taken away, I think I would want it to be my spasticity. It really sucks not being able to use my hands like I once could... and wear a bra! If I wear a bra, I get the MS hug... so I just don't wear one to avoid that torture. If you haven't had the MS hug, be thankful... because it's not a pleasant feeling. It's like your body is seriously squeezing you from the inside out around your chest area.

Ok, that's my rant for the day... I'm gonna go lay down for a bit, even though I've slept non-stop... I'm still exhausted.


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