Thursday, February 9, 2012
I am on an MS forum now which has been wonderful to talk to others all around the world that have MS and their stories. I have learned a lot from others and what they do that works and doesnt work for them. its also nice to know that its not just me that is having issues with their medications.
my mom and i are going to cancun in 2 weeks, i cant wait to get some natural Vitamin D and just to relax and not thing about anything stressful.
Wednesday, February 1, 2012
Chalkboards using cupboard door- my dad has a pile of cupboard doors he is never going to use, so i might as well make something cool and profitable out of them.
bath product. i need to learn how to make my own bath products since i take so many and then i could create my own label with my graphic design skills
painting furniture- i love doing it, trying to fit something around lots of corners and shapes.
flax seed heat up throws and packs. I practically sleep with my flax seed shawl every night and they are so dang expensive to buy. but i will learn how.... and them sell them
steampunk stuffies.... i've already started on these and they are a lot of fun. i love the steampunk style. i just need to get my sewing machine working :)
If i could make $500 a month on doing all of these awesome things and ideas.... i wouldnt have to work sinc e it would pay for my medical bills and massages. a girl can dream right?
I went to the MS Annual convention in Minneapolis this weekend. The usual drug companies were there and some other companies that help people that are completely disabled. The MS Achievement Center was there and they are a place in St Paul. They have classes you can take including gardening, yoga and fatigue management. ofcourse as long as I am working full time and the schedule that I have, i wont be able to do any of it.
I am working on Dustin putting me on his health insurance and me looking for a part time job. the biggest issue is that he wants me to make the same amount of money that i am making now. do you know of part time work that pays over $20 an hour, that does have me stand on my feet all the time or lift heavy stuff? yeah i didnt think so. sometimes i think we need a financial advisor and my neurologist in one room to talk to us and let him know that this stress is too much for me.
i've slightly gotten better with my numbness. my fatigue is pretty extreme though. i no more than finish up work at 4pm and go right to the couch. its annoying that i dont have the energy all the time to do all of the creative things that i want to do.
i'm starting up a different dose of vitamins as soon as i get the shipment of them. I am excited to start 5,000 IUs of vitamin D and straight b12. Along with Pro-Enz which has a lot of anti imflammatory stuff in it and Fish Oil I am hoping that will help with the fatigue.
Sunday, January 22, 2012
i went to a seminar on thursday that was put on by my neurologist and she spoke about symptoms and symptom management. some stuff i knew already but others i didnt know. so I have been taking a nutrition pack of vitamins that are a multi vitamin, fish oil, vitamin d magnesium then i have been taking about 40000 IU's of vitamin D, an anti inflammatory that has bromolein, ginger something and rosemary something and a B complex vitamin that has B 12, B12, folic acid.... ect
plus i am taking my interferon medicine Rebif.
and I feel worse than I have ever felt with my MS in within these last 6 months.
I feel like i have done all of this research and trying to figure out what works best and what other people do for this disease and how people manage and live. Which is part of why i started this blog in the first place. I bore Dustin to death with him hearing about MS and hearing about my aches and pains so this gives me a place to put all of it.
Basically I should really only be taking vitamin D and maybe B12. Good thing I am pretty much finished with the vitamins that I had anyways. There isnt a specific MS diet that I should be on other that to try to eat healthy. So I shouldnt worry about a Glueten Free, Paleo, Vegan, Vegetarian, Raw..... any of that stuff that is out there. Its hard when every one that has been diagnosed with MS has different symptoms and different levels of all of their nutrients so there isnt going to be one particular thing that is going to work for everyone
I am still having the numbness, tingles and pain in both of my legs. I had to ride with a friend back to my home town to go bridesmaid dress shopping because I knew i couldnt handle an hour and a half of driving. If I am still walking as bad as I have been since friday, I will probably be calling my neurologist.
It sucks when you feel like these extreme MS medications arent working and then you have the thought of "what if I am getting progressive MS" going on in the back of my head. I still cant get used to the pain of the needle when i give myself the shots on the top of my thighs. I makes me miss being on Copaxone.
Sunday, January 15, 2012
Saturday, January 14, 2012
I used to have a "bullet" to make smoothies with, but it wasnt the actual bullet that you see on infommercials and i never used it, so when we moved into our house Dustin had me get rid of it.
today when i was at target I decided i should make get another one for my dynamic greens I take and try to make some healthy smoothies again. its a south beach diet single serve blender that you can drink right from the glass instead of dirtying another glass and having a million pieces like blender. it was only 17.99 so i thought it was a good deal. hopefully it will work.
Like i had said before , i am not going to go on a crazy strict diet for my MS, life is too short for that. But I am going to eat what I like that is healthy, especially during the day during the week
I made an anti inflammatory trail mix. I kind of just winged it and didnt go by a recipe. I went by foods that I like that i thought would be good together. How I made it
I mixed together almonds and walnuts, melted coconut oil and poured it into a plastic container and shook it up so that all of the coconut oil got all over the nuts. then I sprinkled in cinnamon then shook that up. then i poured craisons and blueberry infused craisons in and shook that up.
it turned out pretty good. I would like to try a little bit sweeter oil though or figure something out since i am used to most trail mixes having a bunch of sugar and candy in them.
today i worked on the guest bedroom/my art studio. I was able to set up my cricut on another table, my sewing machine and now my drawing desk is clear so i can start painting. I figured i have tv shows 5 nights a week now, I might as well be productive and hopefully it will discipline myself to make art again. watching tv might make me more calm while i do this attempt. I still have to have Dustin hang up stuff for me, hopefully I can get him to do that tomorrow and then the room will be complete!
Thursday, January 12, 2012
This company isnt on there, but should be and this is the brand of vitamins I take
I like the fact that you cant even order them unless you are a doctor.
Wednesday, January 11, 2012
Beta-carotene and other carotenoids: Apricots, asparagus, beets, broccoli, cantaloupe, carrots, corn, green peppers, kale, mangoes, turnip and collard greens, nectarines, peaches, pink grapefruit, pumpkin, squash, spinach, sweet potato, tangerines, tomatoes, and watermelon.
Vitamin C: Berries, broccoli, Brussels sprouts, cantaloupe, cauliflower, grapefruit, honeydew, kale, kiwi, mangoes, nectarines, orange, papaya, red, green or yellow peppers, snow peas, sweet potato, strawberries, and tomatoes.
Vitamin E: Broccoli, carrots, chard, mustard and turnip greens, mangoes, nuts, papaya, pumpkin, red peppers, spinach, and sunflower seeds.
Other super foods that are rich in antioxidants include:
- All berries
- Red grapes
- Alfalfa sprouts
Vitamins aren’t the only antioxidants in food. Other antioxidants that may help boost immunity include
- Zinc: Found in oysters, red meat, poultry, beans, nuts, seafood, whole grains, fortified cereals, and dairy products
- Selenium: Found in Brazil nuts, tuna, beef, poultry and fortified breads, and other grain products
Monday, January 9, 2012
These are the antioxidant, anti-inflammatory power sources effective against a number of diseases like acute traumas, injuries, arthritis, cancer, indigestion, acid peptic disease, dementia and many other chronic inflammatory conditions. Examples are:
|Papaya (rich in vitamin C and E and papain, an enzyme that digests proteins)||Pineapple (contains an enzyme Bromelain with excellent healing properties)|
|Blueberries (rich in phyto nutrients)||Goji berries|
This anti inflammatory foods group is another major ally to the anti-inflammatory warfare. Examples include:
|Cruciferous vegetables (rich in phyto nutrients i.e. sulphoraphanes which has anti cancer properties)||Spinach (source of carotenes, flavonoids, vitamins, potassium, magnesium, tryptophan, calcium, iron and folate)|
|Sweet potatoes (contains fiber, vitamin C and B6, beta carotenoids, manganese and carbohydrates)|
|Green beans||Bell peppers|
Various kinds of cold-water fish like:
are an excellent source of omega-3 fatty acids. These include most importantly eicosapentaenoic acid and docosahexaenoic acid.
There are numerous benefits of omega-3 include a healthier heart by reducing the chances of heart diseases, preventing and fighting cancer, helping against autoimmune diseases and psychological ailments. All of these benefits result from its excellent anti oxidant and anti inflammatory properties.
Olive oil contains an abundant supply of polyphenols and monounsaturated fats, which reduce inflammation in cardiovascular system including heart and blood vessels, which in turn reduces the risk of atherosclerosis and all the resulting complications. It also helps fight against Rheumatoid arthritis and allergic asthma by the same mechanism.
Avocado oil is.another, very effective anti-inflammatory agent, which is similar in composition and properties to the Olive oil.
Green tea is rich in flavonoids, which are a very potent agent in decreasing the incidence of heart diseases and effective against malignancies too.
However, you shouldn’t forget about water, as this is known as the simplest, cheapest and widely available drink. It has been shown in many studies that water accelerates the body’s metabolism and speeds up the removal of harmful by products of metabolism.
Spices and Herbs
Seeds and Nuts
Sunday, January 8, 2012
other than massage and acupuncture...
taking baths...I LOVE taking baths. right now I have my ipod player in the bathroom downstairs that has the jacuzzi tub. My current favorite things when i take a bath are:
- Chris Cornell's Song Book acoustic album (I love his voice)
- Lavender Sleep Epsom Salts
- Blissful Bath Bath Bombs, Blissful bath is a bath store in Woodbury, MN that I am obsessed with, its all natural products there and that have a lot of fun things there. I have the Sleeping , Oh my Achy Muscles, Mango Margarita and Oh my Stuffy Nose Bath bombs, they have little scrub truffles that are wrapped like chocolate.
I am also in love with Yogi's Kava Tea Stress Relief. I really like to drink this on the nights I have to take my shots.
I love doing yoga but I am terrible at getting myself to do actual yoga but I am always stretching, I think it will be easier now that I can watch streaming Netflix yoga programs upstairs while Dustin is downstairs.
My flax seed heat up shawl. This thing is amazing. My mom recently make me a new cover for it because I have used it so much. I am always cold, which is opposite of people with MS. I am always heating it up before I go to bed, all day while I am at work, while I watch tv.... basically all the time.
I also take a lot of Ibuprofen I only like to use it for headaches and the nights that I take my shots, I have this anti inflammatory gel called Soothe from Mlis that I am always putting on my neck, its helps with headaches. I love Sombra too, I need to buy more though. I bought this other spray stuff that I cant remember the name off, its somewhere probably in my closet that I like to that is supposed to help with pain and muscle I got it at a fair i think.
I love anything that is aromatherapy too.
I made potato soup in the crock pot with lots of spices and herbs. I got a little inspired by re-reading the Paleo diet. I dont really want to follow any strict diets, I want to enjoy life and food with out having it be run by it. I realized that I already eat a lot of the stuff (minus anything that lives in the sea) already. one of my first MS books I got was a book from my grandma called The Multiple Sclerosis Diet Book. I think it has a lot of information about MS in it, I looked at some of the references and nothing is from the 2000's. I feel like there is so much more relevent information now because of how much progress there has been on treatments, medications and diet. I am really excited about how there is at least 3 more medications on the way to being FDA approved.
I just got my MS society programs book in the mail on friday, I just found out that they have now put the 20's and 30's group on facebook. I am really excited for that , I really want to be able to get to know even more people my age dealing with the disease. That was one of the most frustrating things I found when I was first diagnosed, I could only find older people and it was depressing to be around when you are still trying to figure the disease out. The 20's and 30's programs and happy hours have been so much fun and uplifting. My neurologist is speaking about managing symptoms next week and also the Women's Conference at the end of April, plus another 20's and 30s outing. So there are lots of things I am looking forward to doing.
I have a massage schedule tomorrow and acupuncture tuesday. I am a little sore from walking around a lot (a good kind of sore) and bending over the tub to give Sixx baths so I am going to take a bath tonight with my epsom salts and relax.
Saturday, January 7, 2012
Sixx and I have made a few trips to the dog park this week since it feels like october outside. its good excersize for the both of us since i need to be walking a lot. the dog park is so beautiful, i could sit there all day and paint with all of the trees and pond... but i need to keep an eye on Sixx :) I am hoping to take him there a lot more once it warms up more. Right now its a little muddy so he has had 3 baths already this week since he sleeps with us.
I signed my MS walk team up for the Minneapolis Walk this year, I want something that is exciting and fun. This will be the big Twin Cities walk and I have heard a lot of good things about it from the 20's and 30's group.
Friday, January 6, 2012
This was on the news last night, I stopped everything that I was doing to watch it
Dustin said, wouldnt it be nice if you could get back to the way things used to be? I said yes, I want myself from early 2006 back.
Thursday, January 5, 2012
Essential Nutrition Pack:
Omega 3 Fatty Acids
Vitamin D I am taking a total of 4400 IU
44 mcg's of rebif 3 x a week which is an interfern to treat my MS from relapsing or progressing. As of right now I have been on it for 3 months
I also get massages every other week and have recently started getting Acupuncture.
I have been awful about working out lately, mostly because I am too tired to. Although I do like to bust out a song or 2 of the Michael Jackson Experience. Now that we have Sixx he is a good excuse for me to go walking around the dog park. I would probably do better with a work out partner. I really need to get back into yoga. Having a relapse and a constant flare up issue has really slowed everything down for me.... on top of switching medications. Rebif took awhile to get use to.
I have read lots of things on diets I know I should probably go on a Paleo diet, a vegan diet, a glueten free diet, a raw diet, an organic diet or go by the foods i read about in my MS diet books. I dont have the discipline for it or the money for that. I would probably go organic but that is expensive and I can barely afford my medical bills as it is. yay insurance.
I thought this was a very interesting video that my sister shared with me
I am fine :) I recently had an MRI and it came back with new active lesions, the one i had 2 years ago was considered "stable" This disease is so unpredictable and you never know when it is going to say "hello". I have been taking Copaxone for 4 years now, which is a nightly injection. It has prevented me from having relapses, but it is not doing what it needs to do from preventing new lesions from forming. My neurologist wanted to meet with me right away and discuss the next steps for what i should do. She said I should switch to Rebif which will help stop new lesions from forming as well as relapses. This will be a 3 times a week/every other day injection. I will also have to have my liver enzymes tested every month or so i think and no, i cant be pregnant while being on it in case any of you want to keep asking when we are having kids :-p I also may get flu like symptoms which dustin gets to take care of me with that hehe.
I was a little surprised to find out about my MRI because i feel fine, but even when you feel fine that doesnt mean everything is fine. Then i thought about it a little bit and realized that i have had a lot of stress over the past 12 month with me getting thrown on to a team for work that is extremely stressful, planning a wedding, dustin getting layed off twice, buying a house, getting thrown back into the office in eau claire for most of the summer. so all of that must have added up to me having some more snow flakes on my brain and spinal cord. my continuing symptoms that i have are fatigue, i get tingling through out my back that feels like i have a bugs crawling on me, and balance...ask me to walk on my heels or tipy toes... its interesting. as you know, when you see me, i look fine :)
so yeah, i'm not having a relapse, i dont have progressive ms, and i am not dying...yay!
i am getting back on the crazy amount of vitamin supplements (i slacked for the last 4 months) and need to re-evaluate my eating habits and try to exercise more. with the support of my husband, family and friends i should be able to get through it. I'll be starting on Rebif in about 2 weeks and will have to get and MRI in another 6 months, i also had blood work done too to see what my vitamin D, B12 and liver levels are at too.
April- I did the MS walk in Eau Claire, My Aunt Susie and Uncle Mike and their kids came up for the weekend to do the walk with us, it was so nice that they did that!
May-we went to Madison for the MS Walk there, I had SO much fun having the support of so many friends come out for it, I also did the Cystic Fibrosis walk for my friend Kayla.
January 3, 2010 at 7:02pm
none of these are in order.1. get my office decorated and arranged to where i dont hate being in there. with both my work and personal computer being in there. the last thing i want to do is be in there more often than i have to right now. that way i will start drawing and painting more.2. draw and paint more.... i have so much paint i had to buy for all of my classes when i was in college its rediculous.... watercolor, oil and acrylic. 3.get promoted at my job so i can start saving money now that i am not living with my parents. 4. climb up the relationship status ladder, maybe then all of my married and engaged friends will want to hang out with me :(5. get a new car. 6. start convincing dustin that we should move some place warmer.7. find an art community in hudson8. help get the 20's and 30's MS support group going9. make more friends. 10. try to convince the friends that i do have to come visit me. especially the ones that drive to minneapolis and dont stop by. we live off hwy 94, you have no excuse. 11. learn how to cook better. with all of the awesome stuff i got for christmas, i really want to make some awesome things.
2009 involved me moving to Hudson and starting my life with Dustin in May
March 26, 2008 at 7:00pm
so we're coming up on a month since i've moved home. i think it was a good descision. i feel so much more relaxed and more emotionally balanced. i can do things at MY pace. i have been working out almost every day. i was doing it about twice a week and going to these classes with my mom and sister. yeah i had enough of that gay crap. the step class is not my thing, trying to do triple axels off of these "step things" was enough to make me decide to not do it. i got way too confused. i will be doing the yoga and pilates classes though. instead i meet up with my dad at 4:15 after he gets done with work and work out with him for an hour. that way i have someone to work out with and it will get him to not go so fast and kill himself off on the eliptical machine. during the day i have been filling out paperwork, i'm going to try to get some sort of disability if i can. after getting threatened to get written up or fired at my previous job every day for forgetting stuff or being confused, why the heck not? not to mention i havent had much feeling in both of my hands for the past two months. it has prevented me from writing, DRAWING and lifting because i cant figure out what my strength is. that being said, today was my 2nd day of steroid treatment. i am already improving with my hands. i'm very excited to draw again and maybe paint. i love luther midlefort. everyone there is awesome and knows what they're doing. when i had my relapse in february meriter had me there for THREE hours getting steroid treatments and there i am here for 45 minutes. then i picked up a little art project and made a quick $30 since the RN needed help with a project for his grad school class. if anyone has anything they want me to do, ask me now while i'm not working. that way you will have it done in a timely fashion. lets call it march madness where i will give you a good deal just so i have something to do :)in other stuff with the job situation. i have an over the phone job interview for a company where i will have the opportunity to work at home. i think this will be a good thing. plan of action with this: live at home until i get all of my debt settled (which is not as bad as at sounds, only 2 g's ) and then relocate to hudson and live with dustin. i have also applied for a job at the chippewa valley newspapers for a web design/artist job. so i'm waiting on that. its been advertised since i have moved here. i dont know flash well enough and i dont know basic java scropt, other than that, i am golden. i'm hoping they will be desperate enough to hired me. in that case, i will live at home until i cant stand it anymore, which shouldnt take long since i feel like i'm living in a closet. bad bad bad feng shui! it has been nice being around my parents, eating normal meals, making awesome protein shakes for my mom and i ( my dad is afraid of protein shakes and claims he doesnt need them...whatever), chilling in the basement at night and watching american idol (i'm rooting for david cook, he's hot and he has good tase in music), new being stress free. however i have a lack of social life and that is driving me nuts. i have done amsterdam and i have charter on demandddddd! i also get to see my sister and adam a lot, PLUS BISCOTTI! so that has been nice.that is all, i'm on steriods, getting my health back and karaoke since i was in madison 2 weeks ago and i cant handle it. I NEED TO SING AND DANCE.
Tuesday, January 3, 2012
August 23, 2007 at 6:08pm
hey everyone!so i need to move to the west side. my feet have been numb for 3 weeks and i cant handle the drive from the east side to the west side anymore, its too important for me to be near work.
a year ago...
Wednesday, November 14, 2007 at 1:33pm
so its been almost exactly a year since i was diagnosed with multiple sclerosis. Its amazing how the time has gone by. last year i was able to form a team called the space cadets and we raised A LOT of money and i believe were in 3rd place for the madison teams. This year i plan on participating in the madison and chippewa valley ms walk. i would love to have you join my team!we had about 20 people walk last year and i want to make it bigger and better. i would also like to schedule some fundraisers. being that some of you are in bands i want to try to schedule a benefit show and some other things. if you can help out in anyway that would be great! Thanks!!
i had my 1 year check up last friday. since i had a relapse in may he wanted to do an MRI. i got the results from him on friday over the phone. he said there were new lesions on my brain which is to be expected everything i have a relapse. his concern was that some of the new lesions that showed up were still active. he thinks its probably time to start considering the shot treatments. my heart sank, although not surprised. some of you may know that my right leg has been numb for about 2 weeks. its REALLY annoying. it got better saturday for a little bit which was good since i had to walk down the isle for my sisters wedding. there are so many thoughts running through my head right now. like.. what happens now? can i finish school? is its going to be possible for me to accomplish my dream? why did this have to happen to me? should i move back home? i love madison and my friends that i have down there, especially the ones that have stuck by me the whole way and have been understanding about my fatigue,pain and mental retardedness i have from time to time.
cha cha changes
December 10, 2007 at 10:37am
lots of things to talk about.my sister got married 2 weeks ago, its still sinking in. the professional pictures got put up online. the whole thing has been kind of an emotional thing for me. i havent shown it at all. its weird, my sister is MARRIED. AHH! i've never seen her look so beautiful and happy. its also hard because i didnt get to help out with any of the planning since i was so far away. i feel like i'm missing out on a lot. its made me homesick for the first time in a long time. also, i love that little dog they have, even though she pee's all the time. biscotti time!i had to go to the neurologist friday because he thinks i should get put on the shots. as if seeing my brain a year ago with white spots wasnt freaky enough, seeing them with some spots gone and then bigger ones show up was freaky. so we had to talk about the different options i have. basically we narrowed it down to copaxone or rebif. i'm going to go with copaxone. even though i have to give myself a shot every day, i wont get the flu like symptoms like the other shots. i'm not going to start on them until the first of the year because thats when my insurance will change over to blue cross blue shield. hopefully i will have a new job by then.lastly dustin.dustin dustin dustin. i have been trying so hard to not get my heart so involved and just avoiding commitment and any sort of other stuff i'm terrified again but i did it. i pulled a cute one and wrote "will you be my boyfriend check one: yes no or maybe" and passed it to him at my parents place last night. he wrote "[x] hells yeah!" i met his dad and step mom, brother and his wife and their two kids. its pretty crazy since stuff has been going on since the end of august. its amazing how simple and normal things are. they are also very intense. dustin has this rock and roll edge to him but he is by far the sweetest and most thoughtful person i have ever met. its not just a show he is a genuine person. he doesnt do things to suck up to me or my family. he just is who he is. a little background on dustin, he is an amazing artist, i love his ideas and his unique style, he also went to the minneapolis college of art and design for animation. right now he's a superviser for matress giant. he loves going to concerts and makes the best mixed cds ever. he does all of the little things that i have been waiting so long for someone to do for me. its so nice to find somone that gets me and likes doing the cute things as much as i do (although he as totally one up'd met everytime!) he also lives in hudson which is far away and it sucks but it gives us time to talk on the phone and really get to know each other. after meeting his family this weekend i now realize why i couldnt possibly try to pry him away from that. i could blab about him some more but there is no need to gush because i'm probably grossing everyone out. but yeah check out the pictures in my photo albums and see for yourself
I'm numb-no this isn't emotion related:
so I've had some weird numbness to my right hand for a few months now. it's now spread to both of my arms, a little bit of my legs and parts of my back. when i walk, i feel like i'm walking like jack sparrow from pirates of the Caribbean and i get really nauseous and dizzy. its just gotten this bad in the past week now. i went to the doctor, after calling in sick for the first time EVER in my life. i was supposed to unload a truck at 6am and i have a hard time lifting anything and picking things up because i'm so unbalanced. they drew blood and made me pee in a cup and are doing about 12 tests on me (some are thyroid, B12 and lymes), they said they would let me know by the end of the week. so hopefully today or tomorrow. i'm pretty scared. i'm hoping its nothing too big. i cant draw and i can barely type, i've had to go back and do a lot of correcting on my words cuz i hit the wrong keys. i'll keep everyone posted. thats why i wasnt at 80's night last night. i was going to go for a little bit and watch everyone dance but i didnt feel well enough to go. thats all, i'll keep everyone posted.
for those concerned....with my doctors stuff
i FINALLY got a doctor to call me back, i tested positive for the ANA test which is anti-inflammatory diseases, they prescribed me some pills that i take twice a day that should relieve some of the pain.they'll be doing more tests next week
so i went back for my physical and to review my test results with my doctor. it only took them a week to do this. grr. so more blood tests, she recommended me to a neurologist and to get an MRI. lovely. they scheduled the appointments for me but they werent until the end of november. my mom had a similar problem to me last year, turns out the guy is in my network that she saw so i'm going back to chippewa monday night and having the neurologist look at me tuesday morning. happy halloween to me. hopefully we can find out whats wrong. my dad drove all the way down this morning. my entire family is extremely worried and have been calling my parents constantly. i've been recieving messages from some of you. thank you very much for caring and being concerned. i havent replied because i havent had much for answers or anything so this i my big reply to everyone.i've gotten a little better, my muscles are just really achy. the numbness is still there a little bit and i'm exhausted all the time. its awesome. and i'm getting really behind in school cuz i cant do anything.yesterday was my first day back at work in a week and a half, i worked 2-6:35.... i left early because i was so exhausted. i still get tired easily and thats the most i had been on my feet in week and a half. i got a doctors note restricting me from lifting 20 lbs and now i'm only working no more than 5 hour shifts until they find out whats wrong with me. so thats the update. hope everyone has some fun for me this halloween
MRI Test results back...not good
i'm sure that got your attentionso those that have been keeping up on my health stuff... thank you... for those of you that havent. well you kinda suck... jk.. so i had an MRI on tuesday morning in eau claire. they got the results back and called right away this morning at 9am. we had to go to menomonie to see my neurologist. this first thing he said was "the MRI results came back and they are abnormal" right then my heart along with my mom and dads all sank to the floor. he said i would need a spinal tap because i could possibly have MS or lymes disease. he also wanted to do some more blog work and put me on predislonewhich is a type of steriod and he wanted me to take it through an IV for the next 5 days. so i wont be returning to work until the 21st, which sucks because i thought i was doing better and able to work longer shifts. i got a spinal tap today, it actually wasnt that bad but now my i back is hurting like a you know what. i feel so helpless right now and it kinda sucks i will be here in chippewa falls until sunday staying with my parents (possibly monday) if anyone would like to call me please do. if you would like to keep me company please wait until friday or saturday... hopefully this is just a weird virus and i can have my life back.
Day 2 Of being on Steroids
i wrote this last night and posted it on myspace... look for another note from me later on tonighth i all, thank you for the large amount of calls and messages. please call me if you would like to reach me, its painful and hard work to check my messages at times. which is why i havent responded to a lot of them, but i have read them and they've kept my spirits up. so thank youmy back is still sore from the spinal tap and i've had a headache from that as well which is to be expected. i went in for my second IV of prednisone. i look like a herion addict from all of the bruising cuz of the amount of needles that have been stuck into me. tomorrow eric is driving up and spending the weekend with me. my sister, the future chiropractor, will be coming too so she's going to do some massage things on me. today i got a balloon bouquet and hersheys' kisses from my dads sisters, i also got some flowers from my friend amber's (yes theres an amber in my group of friends) mom. i will be going to the hospital everyday until sunday at 3pm for an hour if you try to reach me. if my phone is shut off thats cuz i'm at the hospital so i'm near by. hope everyone is doing well, drinking, going to shows and being with friends. have a drink for me since half of a drink makes me drunk now.
hi everyone, its cripple sicky girl.i'm still very sorry, nautious and i get hungry at 3 am and dont fall asleep until 5am. its been very rough and emotional. i have a series of crashes and restless ness. blaheric came up last night. i love that man. i didnt have a cry fit like i had been for the 2 nights before because i had him there. my parents have charter on demand so i've been watching a lot of movies. my sister has been giving me massages but i'm still very uncomfortable. i really appreciate all of your blog comments, comments and messages. if you are in the chippewa area, feel free to stop by. i like company, it keeps my spirits up.we still dont know whats wrong with me. we're leaning more toward multiple sclerosis. which is scarey and worries me a ton. i have an appointment on friday with my neurologist. i wont be returning to class on monday for those that are in the animation program with me. i'm not sure whats all going to happen at this point. the thought if losing this semester and all of the hard work i've done scares me and the thought of losing my job and pier 1 also scares me. luckily i have a supportive family, a loving boyfriend and great friends to help me through everything. i keep freaking out but i really need to just take one day at a time and concentrate on getting better.for those that are in chippewa that want to stop by. my appointments for my IV of predisone are at 3pm and last almost an hour. i should be here until atleast monday night, i may just stay the whole week because i kinda need to be babysat at this point.
very rough last night, i'm going to keep it short
i had massive headaches today. i ended up having a cry spell and when i got to urgent care to get my last dose of predisone i ran to the bathroom and threw up. then i got my IV and the nurse said i should go to the emergancy room and get a blood patch. they kept my needle in so they wouldnt have to repoke me (i have bruises everywhere right now)i got there and they put me in a wheel chair and i tossed my cookies again and then they hooked me up to some rehydration stuff, then pepcid AC and had me drink that nasty chalk tasting stuff since i was having heartburn too. i had to say goodbye to eric cuz he really needed to head back to madison. it was so good to have him here with me. they then wheeled me to a recovery room, sedated me, drew blood and injected it into my spine. i then had to lay there for 2 hours, they carted me up on my bed to a room and fed me some caffeine stuff (it equals 2 cups of coffee) and my parents and sister kept me company. laying there for 2 hours after being injected with like 12 different types of fluid was crazy. i had to use the bathroom 3 times before i went home and then another 4 or 5 times since i've been home now. i will not be returning to madison until maybe the weekend at this point. i have never been in so much pain but this blood patched helped a lot. i've taken 2 tylonel pms and i'm still a little wired from the predisone and caffeine. thanks for reading... i'm doing ok for now.
so i had my neurologist appointment. we went through all of the tests and it was clear that i have multiple sclerosis. i have another appointment at the beginning of january to see how i'm doing. i dont have to take any medication right now, i just have to see how my body handles things now that i've had such high doses of predisone. if i have another relapse i'll have to give myself shots once a week. which i hate needles so that should be interesting if that happens. so i'm fine i just have this MS thing. its going to take a while for me to get back to myself. i'll be returning to madison tomorrow, i might attempt to go to film con for those that are going
how i was diagnosed... (this is a long one, but informative!)
just because some people are curious and wondering how it all developed. i'm stealing this off of msfacts.org my comments are on here to after each thing. just look for the bad punctution. myspace everything is in yellow but facebook is dumb like this. What is Multiple Sclerosis?Multiple Sclerosis (MS) is an illness diagnosed in over 350,000 persons in the United States today. Even now, much is to be learned. In brief, what is known about MS is that it is signified by more than one (multiple) area of inflammation and scarring of the myelin in the brain and spinal cord. Myelin is the tissue that covers and protects our nerve fibers. When this occurs, nerve "communication" is disrupted. Thus, a person with MS experiences varying degrees of neurological impairment depending on the location and extent of the scarring. Although there is no known cure for MS at this time, there is much that can be done to make your life easier.MS is not believed to be a hereditary disease, although having a family history of MS does make an individual a little more likely to develop it. MS is not transmitted genetically, but research indicates that an increased susceptibility to the disease does appear to be genetic.What causes MS?Although a specific cause of MS has not yet been determined, several theories are considered plausible. MS is an "autoimmune" disease, in which, for unknown reasons, the body's immune system begins to attack normal body tissue. In the case of MS, the body attacks the cells that make myelin.Recent data suggest that common viruses may play a role in the cause of MS. If so, MS may be caused by a persistent viral infection or alternatively, by an immune process initiated by a transient viral infection in the central nervous system or elsewhere in the body. Environmental studies indicating where MS exists and where it is absent, suggest that there is a triggering factor. It appears that some factor-most likely infectious-must be encountered before the age of 16 in order for the disease to be triggered later in life.Higher incidence of MS is found in the Northern temperate zones of North America and Europe, might indicate some triggering factor in the environment, such as toxins, vitamin-deficiencies, causing MS to manifest in those whose immune systems are genetically predisposed to MS.MS is not transmitted genetically but research indicates an increased susceptibility to autoimmune diseases, appears to be at least partly genetic. MS itself is not a hereditary disease, but the hereditary factor may make an individual susceptible to its development.Who gets MS?Currently, there are 350,000 to 500,000 people in the United States who have been diagnosed with multiple sclerosis. MS is more common in women, appears more frequently in whites than in Hispanics or African Americans and is relatively rare among Asians and certain other groups.Ninety percent of MS patients diagnosed are between the ages of 16 and 60; but MS can make its first appearance in early childhood or after age 60.Is multiple sclerosis contagious or fatal?MS is neither contagious nor fatal. People with MS have a life expectancy that is not really any different from the general population. The leading causes of death in the MS community are heart disease, cancer, and stroke. MS tends to affect quality of life, not quantity of life. There are unusual variants of MS than can be very aggressive and potentially shorten life, but these are not the norm.the syptoms i had were:fatiguei had a weird burning feeling in my right arm and then it just eventually went from hurting to being tingling and went through my entire arms through my finger tips and my lower back and legsheadachesdepressiondizzinesstrouble being balanced and walking
a lot of you have been a witness to most of these symptomsCommon symptoms of MS include fatigue, weakness, spasticity, balance problems, bladder and bowel problems, numbness, vision loss, tremors and depression.Not all symptoms affect all MS patients. No two persons have the same complaints; no one develops all of the symptoms.Symptoms may be persistent or may cease from time to time. Most patients have episodic patterns of attacks and remissions throughout the disease course. Symptoms may remit completely, leaving no residual damage, or partially leaving degrees of permanent impairment.Because the symptoms that define the clinical picture of MS are the result of nerve lesions causing disturbances in electrical conduction in one or more areas of the CNS, the nature of the symptoms that occur is determined by the location of the lesion. For example: an optic nerve lesion may cause blurred vision; a brain stem lesion may cause dizziness or double vision; a spinal cord lesion may cause coordination/balance problems.how its diagnosed:Major Diagnostic toolsMRI of the brain and spinal cord with contrast, FLAIR MRI (fluid-attenuated inversion recovery), evoked potentials, lumbar puncture (spinal tap) are the major diagnostic tools at this time.MRI is the most sensitive non-invasive method available to detect areas of demyelination, (damaged myelin surrounding the nerves). MRI is safe and accurate providing the clearest evidence of white matter lesions in the CNS, and is also used to monitor the disease.Flair MR with Echo-Planner technology significantly reduces the time necessary to complete the FLAIR sequence and the standard MRI, while giving a greater picture of lesions on the brain.my MRI was very abnormal i had the contrast IV and it clearly showed the white lesions on both sides of my brain and into my spinal chord. my neurologist i think suspected it right away just from seeing my movements and how i walk. the MRI proved that it could be possible for MS. he then wanted a spinal tap (medical term is Lumbar Puncture.... i personally am grossed out by the world "puncture") here's the info on that
Spinal Fluid Analysis the brain, spinal cord are bathed in a fluid called cerebrospinal fluid (CSF). In some instances, the patient undergoes a lumbar puncture (spinal tap). This is done to make certain that some other disease is not masquerading as MS. The oligoclonal bands and the IgG index are abnormal in about 90% of MS patients.we went through my tests that were done. i had no infections, no viral weird thing, no lyme's disease, no cancer cells. i dont remember what exactly each level they tested but a normal level of one of the things is less that 5 and i was at 28. there are 3 areas that they looked at in my spinal fluid and they clearly stated that i did have MStreatment:The necessity for early treatment in MS is becoming increasingly clear. The time has passed for the "wait and see how it goes" attitude before treatment is started. Studies indicate that early treatment delays disability, presumably by decreasing the injury to the nervous system caused by the disease.The treatment of MS generally falls into two categories: treatments that address symptom management, and treatments that change the course of the disease by modifying the number and severity of attacks and the progression of disability. There has been a significant progress in both types of treatments in the last decade. Six different products have been approved by the FDA as disease modifying treatments for MS since 1993. These included three interferon-beta products (Betaseron®, Avonex®, and Rebif®) and three unrelated products (Copaxone®, Tysabri®, Novantrone®).Steroid TreatmentFor acute exacerbations, steroids have been reported to shorten the duration of acute attacks by lessening the swelling and inflammation in MS lesions. However they do not alter the frequency of exacerbations or the progression of the MS, and long term use should be avoided except in selected patients. Included are synthetic adrenal glutcocorticoids (corticosteroids) such as prednisone, prednisolone, methylprednisolone, betamethasone, and dexamethasone.ConclusionThe treatment of MS has changed dramatically in the last decade. A more favorable outcome and better quality of life are definitely more attainable by people with MS through appropriate and aggressive management. Such management should consider all available options including: the medications mentioned above, symptomatic treatments, medical, rehabilitative and psychological approaches, alternative treatment options, and experimental treatments available through clinical trials in specialized MS centers. Your individual physician should be able to provide more detailed information and advise you regarding the suitability of these available options considering the current condition of your disease.Remember, EARLY TREATMENT MAKES A DIFFERENCE.i was treated with 5 injections/IV's of predisone for 45 minutes for 5 days straight. since i had a pretty moderate attack, hopefully it was cought early enough. i'd like to take a moment to thank my great doctor for making me wait for almost a month before sending me to a neurologist, who clearly knew what was up right away. before i got my MRI she said "well it still might be carpel tunnel" my response was "that doesnt explain my walking or why my whole body was numb"... i'm going to hopefully have a better doctor eventually.my next appointment is january 5th back in eau claire. dr felix said if iwanted to find a neurologist here i could, but i would rather keep seeing him because he's very good.my answer for everything right now is "i dont know" because i dont. i dont when i'll have another attack and i dont know if i ever will. i have to keep living my life and really concentrate on keeping myself healthy. there are cases where people have attacks maybe once every 10 years and for others it has taken over their whole life. i'm scared to behonest, but theres nothing i can really do now except work on my health. i must keep a healthy diet, exercise, get a lot of sunshine (my parents were considering taking me to the bahamas with them in december), keep a very low stress level. i cant be worrying about everyone else like i normally do. i have to be selfish.i can still have kids, so thats cool. i was a little concerned about that. although, the stress of having one can cause me to have a relapse.
again thank you for all of your emails, comments, phone calls. ect.. .its been overwhelming. i just have to take one day at a time and slow down.
first day back at school
well people missed me, or atleast they said they did. i went into eds office and told him that i was back and he said "so is it for sure MS?" and i said "yeah" and we chit chatted for a little bit and he said i missed a lot of information while i was gone. there was a possibility for me to drop and i suggested that i get a tutor. he said it wouldnt be a bad idea. so hopefully one of the 2nd years will be able to help me out soon so i can get back on the right track. theres no way i'm going to start the program over for the third time. he also let me see my grades and they're really good, so dropping would just be stupid.i then talked to mark right before lunch and he hadn't checked his email yet. so we talked about everything for a while and what he feels would be best for my health. i have a lot of options. obviously my health comes first. even though its going to suck a little bit, i'm going to take 3 instead of 2 years to finish the program. i'm going to just take 2 classes a semester. i have to keep my stress level low and most importantly... i must keep my health insurance. if have a relapse and i dont have health insurance. i would be pretty screwed. incase anyone is wondering about costs. it was $2,500 for my MRI of my brain and $2,700 for the MRI of my spine. thats without my health insurance. this also doesnt include all of i was pretty exhausted after my first day so i took this evening off. tomorrow i plan on looking through all of the notes i missed and try to get some assignments done. if the tutor thing falls through i'll have to rely on myself. although students in the class have offered to help but i dont want to take up their time.so thats all thats new. i'm doing fine
MS walk + effects of my memory and problem solving
December 21, 2006 at 10:07pm
so i'm trying to get involved with learning more about my disease, dealing with it and what not. there is an MS walk. i've participated in relay for life atleast 4 times in middle and high school. i never thought i would have a walk and funraiser thing for something that involved me. i think it would be really cool to participate in. i've already asked stefanie and eric and they're up for it. i would love to get friends and family involved and have an awesome team. if you think it might be something you want to help out with that would be cool. the walk is may 6th at the monona terrace. starting at 9am. its far away yet but i thought i'd throw the idea in the air. here is the site that you can check it out at.http://main.nationalmssociety.org/site/TR?fr_id=5651&pg=entryin other news on my MS crap, some of you know that i had a heck of a time with finals. i believe i failed both of them. i can concentrate or read things very well. i can read the words but nothing is registering. i'm becoming even more disfunctional. heres some more info on how its affecting me from mssociety.com. Recent research shows that from 40% to 60% of people with MS develop some degree of "cognitive dysfunction". Most people who are affected have mild problems. Moreover, there is little correlation between physical and cognitive symptoms. For example, one person might progress swiftly to total inability to walk but never develop any cognitive problems, while another might have poor memory as one of the very first signs of MS, and never develop severe physical symptoms.Cognitive problems are not inevitably progressive. They are not destined to worsen steadily once they start. Like motor or sensory problems, cognitive difficulties may improve, or become worse, or stay about the same. As all MS experts agree, variability is the hallmark of this disease.Serious problems are far less common. Although solid data are not really available, experts guesstimate that 5% to 7% of people with MS have cognitive problems that can be called serious. These include moderate to severe impairment in thinking, reasoning, or judgment, major personality changes, or a lack of self-awareness leading to inappropriate behavior.Where the glitches are:The vast majority of people have relatively mild problems, mostly in the area of memory and attention," Dr. Rao said. "They're more nuisance problems than seriously disabling ones." These are the most common symptoms:Recent memories are more difficult to recall. A person can't remember what she ate for breakfast or a phone number that she learned last month, but has no trouble remembering phone numbers of childhood friends or the Social Security number that she's had for 20 years. Most people with this symptom can still learn and remember new information, but recall will take a little longer.Fluency with words may be diminished. The person searches for a word. It's on the tip of the tongue, but he just can't think of it. This too is a recall problem. It is not the same as the changes in voice quality or a slower rate of speech, which are associated with physical changes caused by MS.When a lot of information is coming all at once, processing may take longer. If several people talk at once, or the television or radio is on, or even if a single speaker talks too rapidly, the barrage of information can be too overwhelming for the person with MS to sort out. (Eliminating distractions like background noise will help.)Judgment and problem solving may be slower or less reliable. Some people with MS-caused cognitive problems have difficulty analyzing a situation, coming up with a solution, and carrying it out.Cognitive dysfunctions arise when lesions (or areas of MS damage) occur in certain locations in the brain. In MS, myelin, the material that sheathes nerve fibers (or axons) in the brain and spinal cord, is attacked or worn away; scarring is often left in place of the healthy myelin. Scientists recently learned that the underlying nerve can also be damaged, even severed. MS lesions may develop anywhere in the brain or spinal cord, but when they appear in the cerebral hemispheres, the "thinking" part of the brain, some thinking functions can be affected.-i will be posting my MRI up on here when i go back to chippewa for christmas. my lesion are most noticable in my spinal cord and the thinking part of my brain.my parents would like to pull me out of school since i struggled so bad. my brain hurts, i mean i dont have a normal headache, but my brain hurts. i also flared up from being so upset from monday and wednesday i was still recovering, by the time i left class at 1:00 on wednesday i was walking like jack sparrow again. i continued to walk like that for the rest of the night and had fatigue really bad. the thing is, i am capible of learning and doing things. i am a talented person and i am i fighter. i just get confused when its on paper. i have called my neurologist and left a message and talked to the counselor at MATC about getting some special help. it sucks and its lame. but i want to succeed in school. i wont know unless i try. if it still is a problem next semester then i guess i'll have to give up my dream of being an animator once again. working at pier 1 for the rest of my life and being a house wife was not in the cards. however, the affect on finals had on me this week was not worth it.