Monday, April 28, 2014

You have MS, but don't stress or it makes it worse

       Awhile after I was diagnosed I was told not to stress. I already had ulcers and stomach issues from all the other stress going on in my life, but was told not to stress about having MS. HA! I'm good at stressing, it's pretty much what I do. But my doctors have told me many many times to let it go and try not to stress. So to not stress I've noticed that I came up with some interesting and silly things I do to deal with the stressful moments and not let them get the best of me.


       I let it go. I figure if its not going to mean very much in about 30 minutes then forget out it. And while that does work for me, it seems to drive the more "responsible" people crazy and lash out at me for not taking things seriously. I guess I come off as not caring about things and immature. And while yes I more than likely come off that way, its far from whats going on in my head. Last year I tried going back to school and then everything in my life pretty much slapped me in the face for doing so. The same month school started my Grandma that I was incredibly close to died. Two months after that I found out that my 5 month old baby needed physical therapy for his torticallis (stiff neck). The next month I found out he was going to need a helmet to correct the shape of his head (the torticallis has caused his head to grow a bit flat). A couple weeks after getting things set up to get that started his PT (physical therapist) asked if I could start bringing him in twice a week. At his 6 month check up we asked his doctor about some eye fluttering he had been doing. We got to schedule him for an MRI on his head. Turned out he has a cyst sitting right next to his brain stem, but not to worry because its benign and didn't look like it was doing anything. Then PT wanted him to meet with an occupational therapist since he wasn't really hitting all of his developmental milestones when he should be. Needless to say when the semester was over, I didn't sign up for classes the next semester.


       Then there's also my cover up of "I'm good". That I usually say when there is something wrong but I figure whoever is talking to me doesn't want to deal with my issues. So I let them think what they want. The only person to ever catch onto this was my husband before we even started dating and were just friends that talked on the computer and phone all that time.


        Just sitting and listening. That I usually only do when I'm really upset, because someone has really made me upset or mad and I'm trying not to let my Irish temper blow up at the next person. The last time this happened wasn't too long ago. It was when I was flying back from visiting my parents with my two young boys. One the first flight I sat infront of some girls (you'll find out why I said girls instead of ladies) that didn't do anything but gossip and insult people they kept saying werer their friends. For the whole hour and a half flight to Vegas thats all they did. Then to makes things even worse for them, when my boys and I walked intot he airport to catch out next flight, they started gossiping about me! I had never even seen them before in my life! And yet for some reason they felt the need to start talking about me like they knew anything about me, other then I sat in the row infront of them on the plane. The next flight wasn't much better. I live in the east coast time zone and my parents live in the west coast. Thats a 3 hour time difference and our flight wasn't getting back to the right state until 12:30 at night. Thats two little boys (under the age of 4) that have been in the wrong time zone, they're sleepy and stuck on a plane for a little more than 3 hours. We didn't get the row we usually like to sit in, but I tried to make it fun. They both got naps, snacks and even stuff to drink. The boys were being a lot better than I thought they would be for what I was making them go through. Then after about 3 hours the guy sitting infront of us and to the left (I remember this because I made it so I could put one kid on either side of me if needed) turned around and said, "its been 3 hours of kicking my seat and noise and I've had just about enough". I couldn't believe what he had just said and neither could the people around us. The flight attendant and all the other passangers loved my boys and kept telling me how good they were being and even offered to help if I needed any. After that guy said that to me and my boys I was more than ready to blow up at him, but we only had probably another 20 minutes left and we'd be on the ground again. I tried to let it go, but at the same time I also had to sit there and not say a word or I was going to blow up at that guy. When we landed he was up and off the plane as soon at the doors opened while I had to grab not only my two kids, but also my diaper bad, put things away and wait for the stroller by the door of the plane. When we did finally get off the plane I had never been so happy to be married to a tall and musculare man in my entire life. While waiting for the luggage my husband met us to pick us up and the mean guy that had told me to keep things under control looked scared to look at me for more than a few seconds, but oh my goodness was I happy to be off that plane.

Thursday, April 3, 2014

I'm moody, but for a good reason!

   One of the biggest problems I have with my MS is my moodiness, but there is a HUGE reason for it. When I over heat, my body just doesn't quite know what to do, so it doesn't do anything but hold onto it. I know I'm over heating when my hand and feet (mostly my toes) turn red and I start getting irritated very easily. Then there's also the whole being incredibly cold part. With MS my body doesn't know how to hold onto my body heat and keep me warm. So I really do get VERY cold. The cold part is what has done the most to my since being diagnosed though.



     I first noticed being irritated easily and my toes being red before I was even diagnosed with MS, but I thought it was just because I was a girl and it happened to everyone. I did notice that I always seemed to have less energy in the sun as everyone else though. I thought I was just out of shape or something. The only time I've really had anything scare me with the warm part was a few summers ago when I was going on a short walk up the hill I live on. I noticed that as the hill got steeper it was harder for me to breathe. It was like breathing threw a small straw and something squeezing my lungs at the same time. Later I found out from my doctor that that is called the "MS hug". Now I don't go for walks when its above 87 degrees outside. When I go shopping, I usually wear flip flops so that I can tell when I'm too warm and when to shut up so I don't snap at anyone. Its happened more than once while shopping with the hubby. Sadly sometimes just trying on clothes over heats me and cuts the trip short.



    When I was 18 and still somewhat newly diagnosed I went to visit my brother who lived in Washington state (the dry ugly part on the other side of the mountain range). It was in January and it was more than a little cold there, but no one else seemed to be as cold as I felt. I just went with California had made me a wimp with cold weather. I would go and hang out with some old friends that I had grown up with and after being there for about 5 or 6 days I started feeling sick. I was only visiting my brother and his family for a couple weeks, so I was going to stick it out and not say anything about not feeling well. Then about on day 3 or 4 days before I was supposed to go home, I started throwing up. It didn't matter what I ate, drank or didn't, I just threw up. I felt miserable to rest of the time. Then I got back to California where it was warm(er) and humid. I felt fine. I wasn't sick, I wasn't throwing up and I didn't even feel the need to throw up.



    At age 21 I was staying in Utah for awhile with someone my family. I had been there for almost 4 months when I started feeling sick to my stomach. I hadn't changed anything I was eating or drinking, so I just went with I was being a wimp again. So I of course was still going out with friends, going to the gym, and hanging out with family, but then one night at a friends house I threw up. I didn't say anything for my friends and just kept sneaking off to throw up. I got back to my brother and started throwing up again. Not sure, but once again I did go home to California shortly after that and felt fine. There were some other factors in there while going home but I'll talk about those another time.



     I was 23 and nearly married. I had lived in California just shy (by a month) of 7 years and didn't own a coat, just hoodies. My husband moved my to Indianapolis and wanted to show me where he had gone to college. We drove up to Muncie, IN to check out ball state. Only yet again, it was January, cold and incredibly windy. By this time I had put the pieces together of how and why I was throwing up for no reason. The other places were cold, dry and almost not humidity. Northern Indiana isn't dry but oh my gosh is it cold in the winter. I only wore a hoodie since I didn't really think I was going to be doing any walking around. We did. We walked around and looked at some statues and building that he lived in and had classes in. When I finally had him convinced that I was cold and we need to start heading back to Indy, I was really cold. Then he did something I had told him not to do. We got in the car and turn the heater on full blast to warm my up faster. By the time we got back to where we lived I just went straight to bed with a bucket. About 15 or 20 minutes later, I was throwing up.