So how do I get down from here?

So, this is going to be mostly venting. My personal life experience with MS has been pretty tame so far, but then again I'm also only 29 and have only been diagnosed since I was 17 years old. While I'm pregnant (like I am now) my MS is "supposed" to be pretty much suppressed and not doing anything and I don't have to do my shot. Well, not always the case it seems. Some days it's hard to life one arm or the other and sometimes it's one of my legs that has decided to act a bit strange. But! That's not what I'm wanting to vent about. It's about one of my friends. 

With MS it is more likely to have it of you live on a colder climate, are female and of African decent. This friend of mine is "lucky enough" to have all three of those things. So while I've had one huge attack with MS that I can speak of, she has had a heck of a lot more happen to her. She has been paralyzed from her neck down and had to learn to use all those muscles again. Surgeries on at least one of her shoulders because the muscle tissue had died. And now she lives in a place that's honestly putting her through hell. 

To help prevent an attack and treat one, doctors give people with MS steroids to counteract things. Yay right? Wrong. I has to take some once and gained 10 pounds on one week while only having to take them for two. Not only was I upset about the weight gain, but it too a full year to work off those 10 pounds from the steroids. 

Why did I mention that when I'm talking about my friend? Because she's had to be on steroids a lot more than just once. She now has a wheel chair to get around in because her MS likes to pop up a lot more often than mine has. Granted she is a bit older than me, she still has to use a wheel chair before she's even 50 years old. 

She recently got divorced and had to move to a new apartment. When she first moved in she was told that they would put a ramp in for her to be able to get to and from her car and apartment. At least a year later she still has to ask someone (usually one of her girls if they're with her that week) to grab her chair while she uses a cane to help her walk down the 5 or 6 steps to her car because the "awesome" place she lives is on a hill. 

Lately she's been working with a lawyer to either help get a ramp put in or help her out of her lease, but that lawyer has taken some time off because their daughter is going to have or has had a baby. I'm sorry but I thought that if you had a client that needs help, you would at least get someone to fill in while you go spend time with your family. 

Things have been so hard for my friend that she is about ready to give up custody of her two girls and move to another state so that they won't have to deal with their mom living like this. While I don't agree that her girls shouldn't have to help clean up or keep the apartment clean, she doesn't want to make them do everything. But I think there has to be a way to help things move along faster like putting in a ramp and yes him her girls to clean up. Just seems like giving up is the wrong way to go about this. 

Happy Mommy?

I'm not completely sure where to start with this one. I have been going over everything I want to say in my head, but forgot to think about how to start this. So I guess I'll start back in middle school. That's when I started getting sick. I was pretty athletic. I was playing all the sports I could (on the top teams) and even AAU basketball after school. Then in 8th grade things seemed to change somehow. At 5'8" I was about 4" taller than most of my friends and that in turn also seem to make them think I was fat, Well that and I was a but larger up top. It even got to the point where girls that I thought were my friends, stopped hanging out with me. All of a sudden I wasn't as popular anymore and spent most my time at the doctor.


I didn't get depressed, I was just confused. Girls that I thought were my friends, were starting to bully me somewhat. Then right before my freshman year of high school I found out I had some stomach problems. The doctor said that the best way to treat that was with an anti-depressant. Then I started gaining weight. That's when I really noticed that my "friends" weren't such good friends. They would tease me and talk about me, not only behind my back, but to my face. That did hurt, but I still don't think I was depressed. I stopped playing sports in high school to help with my grades and health. I was stopped in the hallway more than once and literally (yes I do mean literally) yelled at by the varsity basketball coach for not even trying out. Honestly though, the biggest reason for not playing basketball was because I was scared to death of running stairs in the main gym. My fear of hieghts was a lot stronger than my love of the game.


A few weeks before my junior year started, we moved to California. I got to start over with new friends, new school and new doctors. I had stopped taking the anti-depressant, but was still a little chubby. That didn't mean I didn't get to do anything. I was asked to prom and even went to some parties. About 9 months after moving there though, a modeling company called my house. No clue how they got my name, much less my home phone number. My mom didn't want me doing that though since I was still having some health issues that the cause was still unknown about. But it did feel pretty nice to know that a modeling company wanted me to work for them.


Fast forward to after high school. By this time all the weight was gone, a couple more modeling companies had called (I turned them down because by this time I knew I had MS) and I turned them down because of everything my doctors had told me about depression and MS. I was skinny (ish) and even thought I was pretty. I was working out at the college I was attending and even getting some really good muscle tone. Then I started to notice my triceps had really good tone. My dad even pointed it out once. I just brushed it off and thought it was from working out. But then I started to notice that my thighs were looking a little bruised when  they were wet and my hips kind of caught my pants at on odd angle.


Fast forward yet again to age 21. By this time I was even smaller and noticing that my thighs were lumpy, my hips had dents, my arms were odd looking and I had a small pouch like thing of fat around my belly button. All the areas I did my shot. I got into a car accident that year and that pretty much threw everything off. I stopped working out as much. By age 23 I got married and moved to the state I live in now. I was feeling fat, out of place and like I couldn't even try to make friends. My husband was really good at making sure I did my shot (for MS) and staying healthy, but I wasn't doing too good at making sure I wasn't getting depressed. So I started on an anti-anxiety pill. Enter even more weight gain like the pill I was on in high school did. We ended up moving near a college town where I really started to feel fat and everyone I was meeting, was meeting me as this fat lady. That went a little too far into my head.


Long story short and 2 and a half kids later, I'm still not where I want to be weight wise, but my oldest son come up to me every morning and asks, "Happy Mommy?" I usually reply with a, "Sure." and then he asks, "Cute?" I say, "You tell me buddy." "Yup, cute."
That really should stick in my head a lot more than it does, but I'm pregnant and my clothes aren't fitting as well as they could, so its hard. But with my oldest always asking me that and the other one being such a big mama's boy that he doesn't like to be more than 25 feet from me, and a very loving husband, its not too hard to keep myself from being depressed.

Heat and humidity...

Heat and humidity are two very different things to me. Not sure if it does the same to everyone else with MS, but for me, the two help and yet ruin things. I absolutely love warm weather. I also like humidity, it seems to keep me healthy and knowing when I'm overheating, I go inside with an a/c. Although, when it's hot I find it kind of hard to breathe, get really irritable, and take it out on other people verbally.

This morning, I needed to go to the store and buy a few things for breakfast, lunch, and snacking (snacking because I'm pregnant and can). I looked at the weather for today and what the temp was before I got dressed to see what I should and shouldn't wear. My app said it was 70 and a high of 91 (humidity was at 91% which should have said something to me). I thought that since I was just making a quick trip in an air conditioned car, jeans and a shirt would be fine. So I left looking like this (I'll tell you later I forgot deodorant). 

Pretty much just grabbed a shirt and jeans and got the boys ready to go. On the way, I thought, I could grab the boys a quick breakfast at a drive thru and eat at a park long before lunch and nap time. So that's what we did. While doing all this, I seemed to have forgotten how quickly the weather liked to warm up, and that chasing around two little boys at a park, even while hydrated, really makes me warm. 

So after an hour or so at the park, I start to notice I'm feeling warm and my jeans are kind of sticking to my legs. I told the boys, "Two more toys and then we were going to leave." We went to the store on the way home. Now, one thing about MS is that, while I know I'm over heated and hot, I don't really start to sweat until I've started to rest (I.e. sit down). So while driving to the store, we still haven't gone to yet, I start sweating and smell that I forgot deodorant. Once at the store, where we only needed 3 or 4 things, what else should happened, but I run into someone I know. Not just a friend, but a relative of my husband's. He didn't say anything, but I'm pretty sure everyone at the store could smell me. 

So long story short, while I might leave looking fine, I come home looking like this.  

I think I'm in labor

Ok I don't really think I'm on labor at 17 weeks pregnant, but I'll get to that later. First I'll start when I was 17 years old, newly diagnosed and meeting my new neurologist. The one that diagnosed me didn't have the best bedside manner (really none at all, I'll save that for a different post).

When I was 17 and it was my second or third time meeting with my neurologist, he was helping me understand what his part was in treating me and what all I needed to know might happen to me. One of the oddest things he told me though, was that when I got into a relationship and I thought it was getting serious enough, I was supposed to being them in with me for him to talk to them. Mostly so that I wouldn't have to explain MS and all the craziness for it. And that kind of shaped how I dated. 

I was a super shallow and somewhat picky person. I even wrote up a boyfriend check list. None of them ever got to see it (my husband did after we had been married a year though), but there were a couple things I never wrote down but always had in my mind when dating someone. Those were, job, degree and (the biggest one I thought) health insurance. Most of my relationships only lasted a couple weeks because I was get bored, they didn't measure up to my list, didn't care to listen to me about my MS, or I had better things to do. 

Enter the man I married. After dating guys that honestly didn't care... In some cases they thought MS wasn't a real thing. I was shocked when my future husband told me he looked it up and researched it. And we weren't even dating yet! So I played it cool, we were friends for a long time (mostly because I was on the west coast and he was about 2500 miles away). 

I'll go off course for a minute here and talk about something I talked to one of my sisters-in-law about and somewhat came up with because I never asked my doctor. It's that a person with MS might have an attack after giving birth. And the fastest way to combat that is to go on chemotherapy. First I didn't even know if I could have kids with all my health issues and chemo just doesn't sound fun. So it kind of ruled kids out in my mind anyways. 

So about 2 years after getting married, I had been around enough pregnant people that I finally asked my doctor if it was safe for me to have a baby. He said it should be fine since I hadn't had a major flare ups in years. 

I was probably the dumbest pregnant lady you will ever hear about. Instead of listening to all the doctors and nurses and even mothers that every pregnancy is different, I only listened to one person. I figured she had kids, she knew what she was talking about and I'd have the same things happen to me.

Oh my gosh was I wrong! First of all, that whole morning sickness thing (that really doesn't only happen in the morning) didn't stop until that baby was literally out of me. Second, contractions hurt a lot worse than just bad menstrual cramps (even more so with back labor, which I had). Third, labor can (and did) last a lot long than a couple hours. Fourth, I really did want that epidural, and it does help. By the 8th hour of labor, I stopped answering my phone because I felt like I had been lied to. 

Have you ever felt like everything you were saying wasn't coming out right and no one was understanding what exactly you're trying to say? Enter the anesthesiologist. I tried to tell him I was worried about having an attack after having the baby and the epidural masking it. He left for a couple hours and came back with some research on how epidural don't cause MS to do anything. I turned to my husband and my friend that was with us (who also has MS) to try and explain what I was trying to say. Long story short I happily got the epidural. 

Odd thing that I need to put in here though, is that when I had my second baby, the research did show that in some cases, an epidural can cause an MS attack. 

Breaks over

Sorry it's been so long since I put anything up on here! Between visiting family and making sure baby #3 doesn't end up like pregnancy #3 (I miscarried last summer), I was keeping this as stress free as I could. Found out with two little ones already at home and occasional blessing, it's not all that easy to do.

Then the weather changed on me. When I left to go visit some of my family for a few weeks, the weather where I live was somewhat cold and humid. Where my family lives it was VERY dry and pretty warm. I did happen to time it in a way that, when I came back, the temps weren't all that different from each other, but I did forget how much humidity plays a difference in what the temperature feels like. All I could think about the whole way home from the airport (other than what happened on that last flight that I'll get into later) was how sticky I felt. Also, my family lives at 4500 feet elevation. So, when just going for a short walk, I kept asking if there was a way to get some more air for me to breathe. 

Ok so, I think you might be wondering what happened on that second flight. Nothing all that fun. First you have to understand that my husband couldn't go with me. It had been so long since I had seen ANY of my family that I didn't care. I packed up my two kids (both under 4 by the way) and flew out to the west coast. That's a three hour time difference. Also, why I stayed so long. To kind of reset their time a little bit before going back. And am I ever grateful that I did, because it did work. Only thing wrong was that our flight didn't land until 12:30 at night local time. 

Anyways. We board the second flight, and since I've had a handicap placard since I was 19, I get to be one of the first people to board. Just this was a connecting flight, so there were already people on the plane. We ended up having to sit one row from where I usually like to sit, but I figured oh well. Most of the flight went smoothly. Baby #2 slept for the first hour or so and baby #1 for almost as long. When they woke up, we already had snacks and drinks waiting.


Then the longest part happened, 45 minutes before we land, and the guy sitting in the row in front of us (but not the seat in front of us) turns around to me and says "you better get things under control because I've about had enough".  He wasn't turned enough to see my face of "uh huh" or I think my cute little Irish temper would have come out a lot more than it did. From then on, I told baby #1 that he couldn't argue with me because someone else had already ticked me off and I couldn't wait to see his daddy, and then mostly read the books I'd brought for them until we landed.


The rude guy was the first off the plane, and I had to wait for a stroller. The guy that sat in the row across from me stopped to talk to me while I waited. He told me that he was amazed at how well behaved my kids were, and he would know because he has grandkids. Also, that everyone around me was just waiting for the jerk to say one more thing to me so they could get him. 

After getting the stroller and meeting up with my husband, we went down to baggage. I told him all about the flight on the way down. I figured it had been long enough the jerk was probably gone already, but there he was, waiting for his stuff. So I got to point him out for my hubby to see. The jerk couldn't seem to stop glancing my way, but then again, I guess he probably didn't think my husband was 6'3 and arms more than twice the size of his. I have to say, even though they lost one of my suit cases (I did get it back the next day), it was a huge relief to know that I not only had a husband to meet me at the airport, but also the support of so many strangers on a plane ready to defend a mother with two small children traveling in the middle of the night. 

As someone who is truly a pro at stressing, I can always remember there are people out there that will help. 

Ok, on to the second part of why it's taken so long to write. The bleeding. When I was about 8 weeks pregnant, my husband forgot to turn his alarm off. It was a Sunday morning and he usually gets up at 5 am for work. So I woke up and went potty. Only thing was, this time there was a lot of blood. I panicked. All the thoughts I had of last summer and miscarrying came flooding back. I called for my husband to come see and he just kind of nodded and waited for me to come back to bed. I called the on call doctor (mostly expecting to be told to wait it out and see what happens). They said to head to the ER. My husband called his parents, they came over to keep an eye on the boys while we snuck off to the hospital.


Long 5 hours, a very strong pain killer (I had never heard of and with side effects I didn't like), an ultra sound, blood work, and pregnancy test later, they sent me home. Just on bed rest until further notice.


Even longer story short (sorry it's almost 10 and I'm starting to get sleepy), the next Saturday, the same thing happened. Alarm went off when it wasn't supposed to, I was bleeding again but didn't have to go the hospital. Just stay low, don't lift anything and stay in bed. Bleeding stopped by lunch. Then Wednesday came, and it happened again. Only this time, the office was open and my husband was already at work when I started bleeding. So I got an appointment, husband left work to go with me, and bleeding had pretty much stopped by the time we left the doctor. 

I just recently started going back to the gym. The baby looks and sounds great. And I'm still planning on doing the bike MS in Seattle this September. Only, not for nearly as long as I was planning, unless things are going really well.  

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.

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.