Too many thoughts, too little time.

I Did It

I think of my siblings in 3 groups. I am the oldest. Then next 5 I think of like siblings. The next two are mine. I raised those kids while my mother took 6 hour shopping trips, 3 hour naps, and the rest of the day was 7th Heaven marathons. While I love the youngest 2, they are always my kids’ friends.

But those 2 older teenagers. I was there helping to teach them to walk. I was listening to them practice reading. I was taking them out for lunch and tucking them in and reading bedtime stories. I was the one pulling Hulk from under my bed when dad would yell and scare him and he’d hide.

I haven’t spoken to my parents since July.

This morning, Hulk came by with Skillet tickets. He wants to take the boys, and hang out for awhile.

This afternoon the doorbell rang, I opened it to see Bane (he is awesome at Halloween lol). I grabbed to hug him he smiled “I got my license Kate.”

People asked me so many times why I didn’t cut my parents out of my life sooner. They are why. I remember telling my first husband. I just needed them to grow up enough to remember me. To decide they wanted a relationship with me.

I did it. They do. They remember me. They want to see me. Nobody is making them come over.

I did it.

 

spread wings

March is Multiple Sclerosis awareness month.

I’m definitely aware of it now. I completely over did it this week. 5 hr drives Monday and Wednesday. Hiking, gym, and hot tub on Tuesday. I tried to eat well, but I couldn’t as well as usual, and didn’t drink enough water. Today I’m too tired to do much of anything. It is usually my grocery shopping day, and I just don’t have the energy.

The weird thing about the “Awareness” is, I don’t even know what people should do. Breast cancer awareness, ok, you look for lumps and family history. A lot of the awareness stuff is pay attention. But MS? Are you normal, only more so? I mean, do you trip and fall? Well, how often? How badly? Are you ever fatigued? Are you more fatigued than other people, whose body you are not in? Is your normal different than everyone else?How do you know? If you answered yes to anything, you might have a disease, or you might be normal.

Let me say this then…MS is invisible. I look normal. It is a stupid disease that makes me feel like a fraud.

Most the time, I’m fine. I will get dressed up in sky high heels and a skirt and do my make up to go out for dinner with my husband, often. And, other times, I will be in yoga pants, because everything else hurts to wear. I will be in hiking boots, because they keep my foot from dragging when I walk.

Sometimes, I can be in the gym for 2 hours straight. Other times, I need my cane to walk into the grocery store.

I managed to graduate college while unknowingly having this, but, I can’t put together sentences other times. Simple ones. I point a lot.

Sometimes just regular life is too much. If you try to talk to me, while i’m cooking, while i have the music on, while the kids are playing a video game, while the dishwasher and washing machine are running, while the dog is barking, I will pretty much shut down. Want to see me unable to form a sentence? That’s a good time to try to make me.

Sometimes, I have to tell my husband his arm around my shoulders is too much, it hurts too much, can he please stop trying to touch me?

I know going to the comedy club (or, well, anything that ends in “club”) is going to be too much for me. So, my best friend no, every time she invites me out, and feel guilty, because I am fine with my regular day.

It means turning down a girl’s weekend in Vegas, because, I don’t really know the other 3 girls going, and I don’t want to spoil everyone else’s fun by walking slow, by falling over, by needing a nap. I know my best friend would be understanding, but, it wouldn’t be fair to everyone else.

At the risk of TMI, I go numb, a lot. Especially my left side. It isn’t really even a big deal to me anymore, I’m used to it. But, it is really hard to tell your husband “I love you, I love being with you, I will, but, tonight, I won’t be able to feel sex.”

I am so randomly good, then bad, that I don’t want to tell people anything. I don’t want to explain why I am well enough to do *this* thing that I want, but not well enough to do *that* thing, that they want. That is where the feeling like a fraud comes in. Last week, I walked around the giant mall with the kids, we we went to look at some cars for fun, I cleaned the house, I did Zumba, I was on my feet all day. We put the kids to bed. Brad wanted to go to the store, for a couple things. I told him I wanted to go with him, but I had crashed. Every step I took felt like I had cement blocks tied to my shoes. I could only go if he’d push me around in a wheel chair. If not, I needed to sleep and we’d go in the morning.

Yesterday, I needed my cane. But, the dog doesn’t walk well with my cane. We had to pack to leave the hotel, and she was going nuts and pulling, etc. So, I had my cane when we went to breakfast, but, knowing Trixie would end up hurting me and pulling me off balance later, I walked without it. I CAN walk without it.I really can. But, I stumble, and I lose my balance (on the bad days) So, breakfast, I need a cane. an hour later, I’m walking a pit bull and loading my car up, with luggage, without a cane.

None of these are even complaints, it is what it is, and I know it and deal with it. This is my life, and looks can be deceiving. But, I’m telling you all this because I have heard “why can you do *this* but not *that*?” I’ve seen the little woman,  climb out of the big truck, in the handicapped space at the store and heard “Don’t look handicapped to me.”, I’ve made fun of the people (in my head) cruising for the closest space at the gym, and now I understand. walking is exhausting, but, the modified gym classes, or the pool are ok. If you save your energy for them.

So, just be aware, not all disabilities are obvious.

I read somewhere it takes someone with MS 5 times more energy to do something, than it does someone without. So, yes, I was awesome, until about 1pm. And, then I used up all my energy for the day. But, somedays I will do better.

 

A memory came to me recently. It kind of solidified in my mind that it is ok to want to change my name. Honestly, I will probably never do it legally. I don’t even know where I would begin to start changing paperwork and bank accounts, etc. Then, there are things I will probably never think about. My best friend has me down as the person who will handle her life insurance for her kids if something happens to her.

My name is Kirby. There is no story. There is no cute reason. It isn’t a nickname or short for anything. Yes, it is more common for boys. I have a bunch of siblings, they all have strange names. But, my name is the only one that never either became common, or has a shortened form that is common.

I remember when one of my siblings was going to be born. My parents wanted to name the baby Chance if it was a boy. I remember saying it was an ok name, but it was better for a girl. And they told me it wasn’t. That Chance for a girl would invite a bunch of inappropriate comments. How someday men might take it as a dare, to take a “Chance”. I thought that was stupid then, but, I didn’t really put things together until I was talking to Brad one day.

Chance was inappropriate? My name is Kirby.

You know what it means to go through life with that name?

It means grown-ass men will wink and make jokes you don’t quite understand at 16 (but look 23) about how you got that nickname.

You will work in a bar, and have to tell a group of drunk men your name, and they will nudge each other, and joke and all of a sudden pay a lot more attention to you.

You will say “Hi, I’m Kirby” and some jerk will respond with “Kirby, huh? I bet. So, you wanna come over later and give me a demonstration of your sucking abilities.”

How about “I didn’t know that’s what they were selling”

Maybe “I bet you give an amazing blow job, who nicknamed you that?”

Oh…”I don’t remember your name…hoover, dyson, kirby, you suck something.”

I have about 15 years of being reduced to little more than a sex toy to others, because of nothing more than my name.

And, my parents and siblings have the nerve to be offended that I want to change my name. I was told outright, that I would NOT be called that. That I would still be introduced as Kirby. (back when I was still speaking to them).

You know the really “funny” thing? I wasn’t allowed to wear SO many things as a teenager. Because, that might make men thing the wrong thing. Men shouldn’t be thinking of me like that. I needed to have more respect. Yeah…when I was 17 and skinny, a man may have thought “Damn! I’d do her” when I had on a pair of shorts that didn’t quite reach my fingertips. But, 1. other people’s thoughts are not my responsibility. and 2. very ,very few men think it is ok to say that sort of thing, when you can’t pretend it’s a joke and I need to just lighten up. Got it. Short shorts cause sin. But, it is ok for me to have a name that makes a  majority of men automatically think of me giving a blow job.

If my mother puts on make-up or curls her hair, there is a fight that lasts hours, about how she must want to cheat. if my dad comes home 5 minutes late, there is a huge blow up about how he must be cheating. Somehow I doubt my husband appreciates these comments about his wife.But, changing my name is just because I “think I’m better than everyone”. and because I don’t “think anything my parents do is good enough”.

I was telling this to Brad the other day, and he asked “Is that part of why you won’t meet my co-workers?” I had to admit, that yes it was. I hate introducing myself to new people. On a good day I get “That’s cute.” but that’s rare. On a normal day, I get a laugh, and a “You’re kidding, right?”, “Isn’t that a boy’s name?” or “What’s that short for?”

I was thinking about it, partially because if I want to legally change my name, I need to explain WHY. I know there are pat answers, that make it almost always get approved. But, part of me wants to say “Because I’m tired of introducing myself and then being asked for a blow job.” Seems like that would push the paperwork through quickly.

 

Blah

I had a big long post…to justify how I was feeling. But, honestly, it is irrelevant. Today I am sad. And I am lonely.I have a million reasons, things I can whine about, but my feelings are valid. Long story short, I have a huge family/extended family, and I’m invisible.

I’m pretty much used to it. Today, I took the kids ice skating when a man stood up as we were leaving. He said “You were here a couple weeks ago. I’m Dan.” And, shook my hand. And, I almost cried walking to the car…so often I feel invisible. Like, seriously, I could build a little house in the woods in the middle of no where, and never have another phone or computer, and no one would notice. I know I’m pretty generic looking, I look like someone you already know. So, the fact I was noticed, when I was feeling like a ghost, was really nice.

I’m not good at making friends, plus I’d been told for 25+ yrs I’d always have my huge family. So, I never tried very hard. But now, lines have been drawn and my side has me, Brad, the boys, my best friend and the dog. They have everyone else.

How do you make friends when people drain you? When being drained and exhausted make the disease worse? When this stupid disease has made me sound like an idiot most of the time, you know, when I can’t remember big, complicated words like “garage” or “coffee” so I stammer and stutter and point and say things like “the room with the car?”. When I don’t like to go anywhere, because I might fall down without any warning.

Can I just wear a big sign that says “I’m not drunk, I promise. And yeah, I’m pretty awkward, but I’m mostly nice. I won’t talk to you first, because I don’t want to bother or annoy anyone.”

God, I sound lame.

 

Who I am…

I wrote this awhile ago, just for me. Yesterday, I was crying to a friend, over a betrayal and a lost friendship and she said” Katie, you’re a remarkable young woman who has made a wonderful life for yourself and your immediate family. You understand that you can’t save people from themselves–that’s huge. I’m sorry you’re sad, but keep living authentically and leave them to god.”

This all came to mind yesterday as I walked my dog around the park. It was cold, and snowing. We were about a mile into our walk. The park road was marked with paint from a race that had finished months earlier. I contemplated running another 5k. I realized how strange it was that I was enjoying myself at that moment. As I thought about it, I realized how many things I truly enjoyed that I wasn’t “allowed” to, and how many things I didn’t like that I was always told I had to.

I had a long intro, but, it is mainly stuff I’ve said before. So, basically, what you need to know is I was raised with these lines, in response to everything… “It is too expensive.”, “It is a waste of time/money.” “Why? you think you are so much better than us?”, “Well, God said…”, “You aren’t strong enough to stand up to people.”, “Your family needs to be the most important thing, not friends.”, “If you don’t like America, leave.”, “2nd Amendment”, “Stupid animals”, “that’s just irresponsible”, “do something useful”. So, as you read this, know that I didn’t know before that this was me, because if I liked, or expressed an interest (or disinterest) in any of these things, I heard one of those retorts.

  •  I’m Katie. I like taking long walks. It isn’t a waste of time. I’m not “overdoing” it. It is my “me” time. I like to use it to think, and listen to music.
  •  I like the gym, and I like the classes. It isn’t a waste of money.
  •  I love my pit bull. She is a part of the family. She isn’t a dumb animal. She isn’t mean or vicious. I love dressing her up, different color bandanas for everyday. And, clothes.  And, I do not regret the purple hoodie I bought her yesterday at all.
  •  My best friend is an Atheist. Believe it or not, she hasn’t tried to make me one. But, she has brought me balloons and a milk shake after I was sick. She did come to visit me every day after work and helping her son with his homework, while I was in the hospital. She came early to help me with a party. And, gave me one of the most thoughtful gifts ever for Christmas. I have another friend, we aren’t super close, but we get along. She has mentioned praying for me, like when I was in the hospital. She prays to Allah.
  •  Speaking of, it is hard to be all “America Rocks. Suck it everybody else!” When she is from Malaysia and thinks it is amazing. When my husband has said he wouldn’t become American if it meant giving up Australian citizenship. My father-in-law has British citizenship.
  •  I like football. I like watching it with my husband, even though I don’t understand much beyond the fact a bunch of big guys try to get the ball to one end, while a different bunch of big guys in different colors try to get the ball to the other end. It isn’t a waste of time. It is time I get to spend with my guys.
  •  I like reading and hate watching most tv. I don’t think I’m “better than everyone” because I’d rather read than watch tv.
  •  I hate mossy oak and real tree camo being worn as fashion.
  •  I don’t like guns at all.
  •  I don’t like crowds, and can only tolerate them for a little while before my arm starts to go numb. And, yes, I realize how strange that sounds.
  •  I like the coffee I make at home best, but I like Starbucks for the atmosphere. Once my husband and I went there, with a bag of candy we both liked and a new crossword book. We spent a couple hours there. It was one of my favorite dates.
  •  I love taking my car to get the oil changed. I also love taking it to get washed. Once, I was sad because I had been looking forward to taking my car to the car wash, and Brad left to put gas in my car. He came back and he had gotten my car washed. I missed getting all the salt off it.I love cooking and trying new recipes. I like seeing how healthy or how colorful I can make a meal. I don’t want a chef. But, I would love someone to follow me around and wash the dishes.
  •  I love falling asleep on Brad’s chest at night while he plays shoot ‘em up video games. Contrary to popular opinion, I think putting an xbox in our bedroom was one of the best decisions we’ve made. We go to bed at the same time now, he gets his video game time, and I get my 8 hrs of sleep, in my bed. I like how he has to cuddle me to have his arms around me AND play the game. So, I don’t think the xbox is stupid, or a waste of money, or immature.
  •  I love drawing and writing. I don’t care how good I am at either.
  •  I love hiking and sitting by the river. I love new areas where I can search for waterfalls.
  •  I like playing paintball and coaching the 4th grade soccer team.
  •  I like taking my kids to the animal shelter and letting them play with the cats.
  •  I like road trips for the sake of the drive.
  •  I love quiet hotel rooms in cities I’ve never been to before and the forced down time of my husband having the rental car to get to work so all I can do is go places my legs can take me.
  •  I like waking up early, and going to sleep fairly early. I like the quiet and the darkness of being the first one up.
  •  I love school, and research and writing research papers. If I could just take a couple electives at the college every semester forever, I probably would.
  •  I homeschool my kids, not because public schools are evil or inadequate, not to keep them from learning about different ideas, not to isolate them; I homeschool them because I can’t imagine telling them “no, you need to sit in class, we can’t go to the museum.” Because, we are blessed with amazing opportunities and I don’t want them to miss it.
  •  I like looking pretty in dresses. I think however I’m happiest in a long hippie skirt and a fitted tank top. Second choice is a pair of perfectly fitting jeans, a cardigan, and fuzzy socks. If I could, I’d wear the first outfit all summer and the second all winter. Actually, I’m working on that.
  •  I actually really love the Tiffany gift card Brad gets every year from Delta. I don’t care that I just spent $200 on sunglasses while most my clothes are from Walmart. But, I also love the jewelry he brings me home sometimes that I know came out of the clearance section of the fine jewelry.
  •  I love water. It centers me. Sometimes I just need to be near it. The beach, a stream, a river, a lake, and if I can find a waterfall I can stare for hours. Whenever I feel like my world is falling apart, odds are really good you will find me sitting on a riverbank somewhere.
  •  In short, I like physical activity, intellectual pursuits, travel and animals. All things I’ve been told my whole life are a waste of time or money and/or made me snobby and only show I think I’m better than everyone.

courage

Looking Forward to a New Year

This year was exhausting. The highs were very high, and the lows were equally as low.

I’ve just been feeling very melancholy this week. I’m ready for the year to be over. How about 2015 just be calm?

I told Brad recently, I was thankful for all the traveling we’ve had this year, because that has broken up a lot of bad. I feel slightly on the edge of a mental breakdown, and I don’t even want to think of where I’d be if I wasn’t regularly running away. It has just been a very, very hectic year. With a lot of stressful stuff.

Can I whine for a few minutes? I’ve tried so hard to have a good attitude, but, I’m tired.

This year started with all the married adults in my family going on a cruise, my sister bought them for Christmas last year. Except for us. We got a board game, and a 2 week babysitting job. Oh, my sister needed the cruise, because she had reconciled with her husband after she was caught cheating. She never stopped. This was also when my mom asked me if I was willing to move in with Grandpa, because they asked everyone they thought would be a good fit and everyone else said no, so that just left me.

I had all that dental work done, and a good portion of my own teeth removed. Which makes me feel really ugly, and old.

I took my parents to Chicago, because my mom had been wanting to go for 35 years. Where I was ditched, at the Museum of Science and Industry, so they could have sex in the bathroom.

My birthday party, where my parents screamed about how I was a drug addict, in front of my neighbors, some who won’t even talk to me anymore now. Where they said hitting your kids with belts until the bruise and vacuum cords is not abuse. Where they said that there was nothing neglectful about our education. My 18 yr old brother can’t read, but damn it, he’s a Christian. Then, they went home and told everyone that they were leaving me alone for 12 yrs that way I wouldn’t get their 6 yr old taken away.

Oh, how about when my 23 yr old brother sat at dinner at our table and explained why it was ok for him to use women, because they were all worthless whores anyway if they’d been with more that X amount of people. X amount is about a third of the people I’ve been with. Then, he told us about the 14 yr old he fucked when his wife left, but it was ok, because she was a whore. I couldn’t get him to give me ANY more info about this girl, and I feel terrible about it.

My brother-in-law moved in to our already small house, for a little over a month. And, for that month I stayed up talking and comforting him until 2am, 3 am, every night. While my sister made snide remarks (and still does) implying that there is something inappropriate about our relationship. There isn’t. Never has been.

I ran into my mom. I tried to walk away. She chased me. Through the store, through the parking lot. Screaming “Why won’t you talk to me?”, “I have no idea what we ever did to you.” I got to my car and said “Well, we can start with you guys screaming I did drugs.” she screamed “We never said that. We never thought that.” When I pointed out the half dozen people who could back me up, she told me I was delusional, I was bitter, I was a bad person. I needed to get therapy and to deal with my anger issues. I needed to learn to forgive. I was a hateful, bitter woman, and she “hoped that one day I could grow enough as a person to forgive and more on.” I got in my car and drove away.

Mike told his cheating x that I was gonna change my name to Katie, and my sister called and bitched me out, and went off about how I can’t do that. This is just me trying to separate myself. This is another example of me thinking I’m better than everyone, and that’s not ok.

I had two uncles die within 2 weeks of each other in October. Nobody told me. I found out on Facebook. Luckily, in time for the funerals. At one funeral, my cousin’s wedding was brought up, I said we hadn’t gotten an invite. Apparently, to save on postage, they gave my invite to my parents, who assured him they would give it to me. Knowing they wouldn’t. At one funeral, my 9 yr old brother ran to me, hugged me, begged to come visit. I told him I love him, he could come visit with my 2 teenage brothers. That’s when his dad stomped into the doorway, and yelled at him, IN THE VIEWING ROOM, to get away from me, and not to talk to me anymore.

I found out my ex husband is engaged. which, great, he likes being in a relationship. Sometimes 2 or 3 at a time. But, the woman he is marrying is nasty, and mean to the kids. And, I can’t do anything about it.

I saw my sister, in October, not the cheating one, she was pregnant, and she was trying to pressure me into throwing her a baby shower.

Speaking of pregnancy and cheating sister, guess who is pregnant. With the married guy’s kid? Yup, her. I’d been saying for years the fall off her high horse would be incredible. I didn’t know how right I’d be.

I did not throw a baby shower, that sister had her baby a couple weeks ago, 9 weeks early. We’ve been to visit her, while praying no one else is there then.

In October my mom’s sister wrote to me, to try to tell me about my biological father. I told her I didn’t want to know anything, but she told me more than I wanted to know.

The beginning of November, my mom’s other sister, wrote to me. Telling me everything about my biological father. She started off with “You’ll probably hate me, but I think you need to know all this.” and went on. I tried not to read it, but I read too much. And, right after that I end up in the hospital, where I get diagnosed with Multiple Sclerosis (completely out of the blue), and my flare up was probably brought on by stress.

Which then brings with it all the medical bills for a 5 day stay in the hospital.

Before this though, I was sad and missing family, and reached out to my married cousin (on my dad’s side). Who I have always been close to. I wanted to go out for lunch, and I know he’s had a bit of a rough year as well. He lives about an hour away, so going for lunch requires a bit of a plan. We went back and forth about how to make this happen. Then he said something like “I want to see your tattoo” I said “You’ll have to wait for summer, you can’t see it in pants, only in shorts.” and he said “well, I guess I’ll have to get you out of them than.” WHAT.THE.HELL.?!?! So I told that was not ok, and haven’t spoken to him since.

Now, the end of the year. Which means Brad has time off, lots of time. The washing machine broke. My car has a headlight issue. I have to pick a medication and go to the dr again. We need to schedule service for both cars, because we have 2 Pontiacs, and 15 active recalls for each. Today is Brad’s birthday, he’s sick.

I feel sad, lonely, abandoned. I’m trying to tell myself that every interaction I’ve had this year has reinforced that walking away was the right choice, but I still can’t help but wonder why this is ok. Why it is easier to shout at me in a Dollar Tree parking lot (god I sound like white trash don’t I?) than it is to say “You are right, we probably didn’t need to hit our children with a vacuum cord.”?

I’m sad, and tired. And, upset. And, trying so hard not to be, because getting worked up will just put me back in the hospital.

Brad keep saying how he thought not having to do holidays with my family would be less stressful, but I’m still stressed. I think, since this is the first year, I’m still adjusting, and that is causing the stress. It probably will be better next year.I didn’t get out of dealing with family though, I had to explain why I won’t be places. We were invited to a couple things, along with my parents, that we won’t be attending. Oh, and my brother brought Christmas gifts over for us, from my parents. Thing 1 got a wallet, and some little toy. Thing 2 got a board game. Hubs got a really nice Starbucks travel coffee mug. I got a white ear band/warmer thing. You know what I’m talking about. They are knit, and a $1 at Walmart. Which…ok…let’s assume the best. I’m always cold? It was a gift, they were thinking of me? White would match any color coat I have? Having left over paper taped to it though…I didn’t unwrap it, so much as I was handed this white thing, with a piece of wrapping sat on it, held on with a piece of tape. It would have been nicer just to forget me. i wish that is what they would do.

And, for the record, I think I’m making huge strides in the forgiveness department. But, that doesn’t mean I need to allow these toxic people into my life any longer. I’ve been trying to run away from them since I was in grade school. I finally succeeded. But, it’s an adjustment.

And, honestly, I feel like I’ve had a really good year, oddly enough. The good has just been punctuated with some very stressful things that i had to vent out. I’ve been a lot of places, I’ve gotten to do a lot of things. I’ve made some new friends.I’ve found out which old friends I can count on.  I’ve really enjoyed the last 6 months of not having to deal with my parents. I’ve been decluttering my house. The boys are becoming so much more responsible, independent, helpful and  mature. I have a dog I love. Brad and I are great, I don’t think I’ve ever felt loved like this before, even with him. We found a church we like a lot. Like I said, we’ve been on a lot of trips.

But, I might spend January sleeping.

More Info

I finally had the follow up appointment with the neurologist. I had myself all worked up before hand, to the point of tears. They sent me information about medication. All the meds were injections. I don’t do real well with needles. When I was in the hospital I kept a blanket over the IV site. I don’t know that I can give myself a daily injection.

Plus, honestly, I was a bit pissed about the whole thing. You know one of my main reasons for losing weight? I didn’t want diabetes and to have to give myself shots! And now, I might have to?

I was reading so many stories about people who were spending $500+ a month on medication. We don’t happen to have a spare $500 a month lying around.

So, the options seemed to be, give myself a shot every day and make us bankrupt, or do nothing and end up in a wheelchair.

I went to my appointment. Can I just say I love this doctor. He said I was doing much better with balance. We sat down to talk about meds. He asked if I was leaning toward anything. I said “Well, I hate needles, so, the one with the fewest shots is the one I’m leaning toward.” He said “Ok, what about pills?” PILLS?!?!?! I said I didn’t get any info about that. He thought for a bit and said “Oh that’s right, your case is pretty severe and the injections tend to be a stronger dose of meds, that’s why I sent you that info. But, you can try pills first and see how those work for you, we can try something else later.” And then he sat down and wrote out the names of all the pills, what they did, what this meant for me (some require follow ups for awhile), the pros and cons,etc. Answered any questions. Brought up price, didn’t tell me the price, just that many of them had help to pay for them because they are very expensive.

Then, he started telling me about a brand new drug…just was approved last month. His office was one running trials. 22 of his patients have been on this since 2003. And, not one relapse. And, only one patient is on any other drug to control symptoms. He said he never even hears from the others about problems. The first dose is IV, 5 day hospital stay, monitored every month. Year 2 is a 3 day hospital stay, monitored every month. After this, you are still monitored every month for 4 yrs total. And, that’s it. Forever, hopefully. With the other drugs, a couple relapses a year is normal. They don’t stop the symptoms, just the progression (or slow it down).

I was pretty excited about this. I asked who was a good candidate for that one. He said “You. You are the perfect person. They are only using it on severe cases, and yours was pretty bad. The FDA though doesn’t want it to be the first course of action, because there are some pretty nasty possible side effects, but that is why we watch you so closely. They want you to try and fail at one or two other meds first.” I said “Well, then I guess I better pick something to start failing while I do my research on this other drug.”

The course of treatment is $160,000…so, see, plenty of time to fail at all the other drugs while we try to convince insurance to cover this. Unfortunately, that most likely means a couple relapses, because the lesions aren’t just in my brain, they are in my neck and all down my spine.

I came home in a much better mood than I left in. I started some research, I thinkI decided on what meds I’ll start out on. But, again, price is a concern. Brad started looking up the info…and it’s our regular copay. Thank God.

So, my options are (worst case scenario here)

injections with a side effect of suicide, but they work well while you are alive.

Pills that don’t work as well and make you look worse (acne, flakey skin, hair loss, weight gain)

An IV treatment that will either make the MS stop or kill me.

Or nothing, and hope for the best, with the side effects of paralysis and/or feeding tube.

More research is needed.

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