Saturday, April 9, 2011

Power Wheel Chair...............

Well today my power wheel chair was delivered... Exciting, but depressing at the same time... It is hard to come to grips with the idea that it is really hard to walk at times... It is hard to come to grips with the idea that I can not push a manual wheel chair myself... It is hard to come to grips with the idea that I do not have the coordination to use a walker... It is hard to come to grips with the idea that it just isn't safe for me to use a cane when I am alone... It is even harder to come to grips with the thought that it isn't safe for me to be alone anymore because of falling down and not being able to get back up by myself... I don't understand why the MS has affected me so quickly when I have done everything I was told to... I started treatment right away... I take my medication as I am supposed to... I started the Vitamin D supplement treatment - 2000 IU, 2 in the morning, 1 at 2PM, 1 at 8PM... I also started taking DHA supplements, CoQ 10 supplements, and Vitamin B complex supplements... I haven't changed my eating habits because I have always ate healthy... I do not eat boxed foods - foods that are considered quick foods like Kraft Macs and Cheese... Every thing I eat is home made, even my spaghetti sauce... Granted I use the canned tomatoes, but they have very little preservatives in them and NO dyes.... My meats we buy from my father-in-law; they do not - have not - and will not - be fed growth hormones and are what they call "free range" animals... Fresh fruits and veggies... The whole spectrum of healthy eating habits... My only vice is Sprite and coffee... I do not use fake sweeteners - I use real sugar... Those artificial sugars are not good for you - PERIOD! They can actually cause you all kinds of health problems... Just not worth it in my book... I will keep using my 16 calories per tablespoon real sugar... Corn Syrup (sugar) and Real sugar have gotten a bad wrap for the last 10 years, it isn't funny... However, I am here to tell you - these two sugars are no worse for you than real butter is - as long as it is used in moderation and the calories can be burned off just as quickly if you sweep and mop your floors... Give me a break and get real people... It's all scare tactics used to get you to use these fake sugars which are WORSE for your body!

Okay now I have went off my course of what this blog was going to be, but this is something that is important to me... Just as important to me and dealing with my MS while I was researching... Fake foods, oleo (margarine), Sweet-n-Low, Equal, any fake sugar, trans-fats, many of the preservatives used, and these egg replacements are NOT good for you when you have MS... They take away from the nutrition values that you need... They put things in your body that you can not process because your body is already fighting against it's self... These products only do you more damage than good... You need to stay away from them and treat them as if they are a disease themselves... Okay so your grocery bill is going to take a hit and be a bit more expensive - BUT isn't your health worth it???As long as you are exercising and eating in small meals 4 to 5 times a day, you will be fine! Healthy Homemade meals... No pre-made or boxed crap... Want macs and cheese - I have a great recipe for home made and it only costs about $7.00 for 2 pounds of it (US dollars)... It is creamy-dreamy cheesy yummy goodness!!! It is homemade!!! The only boxed is the noodles... But they are whole wheat and nutty yummy... Email me and I will send you the recipe -FREE... Spaghetti sauce - I make enough to freeze - costs me about $20.00, BUT I also get 4 gallon bags to freeze and dinner for 7 (with left overs for 7 people + 2) out of the stock pot... Not bad for $20.00 bucks if you ask me... Same as the macs and cheese - email me for recipe... My great-gram always said "gooda food is something to be shareda with lova and friendship... It cana win a mans hearta... It can bringa familia together... But always puta your hearta in your creations..." Gram was from Italy... She came to America in 1917. She loved this Country almost as much as she loved her husband and her family... I was lucky I got to meet and spend so much time with my great-grandma, learning from her the values of good food and how to cook... It tickled me that some words still had an "a" at the end when she spoke, but some how it drove the point home... Good homemade food can never be replaced by fast convenient boxed food - especially now... I find if I eat boxed convenience foods - the MS acts up and I have problems... So I am passing this tid-bit of information along to anyone who wants it... Eat only real food - foods that if your great (or great-great) grand - mother wouldn't recognize them as foods don't eat them... Real sugar will not hurt you, real butter will not hurt you, real eggs are better for you than fake ones, real milk has more vitamins and nutrients than soy - unless you are lactose intolerant... If you exercise and eat in moderation - you will not get fat or gain weight - eat well balanced meals - meats/proteins,  pasta/carbs, veggies/fruits and water...

Okay, I feel better now about getting that off my chest... I had someone tell me I wasn't eating right... Yeah, Okay... They live in my house and see what we prepare... The spices I use help to combat some forms of cancers and other things, but I don't know what I am doing... Sure... But they are eating fake sugars that cause cancers, diabetes and other health issues... They have eliminated all meats from their diet - can't do that... Our bodies need the proteins from the meat and that is a proven fact - scientifically... Ugh, It aggravates me when people try to tell me what to do when I am already eating healthy... I even went over my diet with my doctor and she was impressed... I just wish people would learn how to butt out sometimes... I understand that they think they were trying to help, but...... I feel bad enough sometimes, I don't need advice when it isn't asked for...  

Thursday, March 31, 2011

It's been a while. April 1, 2011

HAPPY APRIL FOOLS DAY! I guess my body has been building up it's surprise for me... Here it is 1:11 am and I am wide awake - AGAIN... It is the 6th time since my last blog posting - what St. Patrick's day? That I have had a sleepless night... I don't know whether it is because of spring fever, I know warm weather is on it's way and I can't wait for that - OR, if it is because of the stupid muscle that runs up the side of your shin that has been spastic and the muscle on my shoulder that has been spastic (almost feels like an unborn child kicking in a woman's womb) that makes my whole right arm tingle like lightning! These two muscles are getting on my last nerve and are about ready to put me in the nut house... My family is patient with me, but I have been awful nasty with them... Very short tempered, and I don't mean it at all... My legs haven't wanted to work, they feel more like jello than anything - and I am at wits end with this whole mess!!! I have absolutely no patience with myself nor the way my body wants to act... I am so tired of sitting all the time because I am too afraid to walk because I am too afraid to fall down AGAIN... I fell a few days ago, didn't even have enough warning to reach out for anything... Then I didn't have enough strength in my legs or arms to pull myself back up to a standing position where I was at, so I had to crawl on my hands and knees like a baby through the kitchen out to the living room to and on to the couch... How embarrassing - 41 years old and have to crawl like a baby!!! I was mortified!!! No one was here to help me... My husband was at work... My eldest son was out recruiting for the company he works for... My girls were out walking the dog... My youngest son isn't living at home right now - long story... And Courtney, well she took off with Scotty somewhere, I don't know where, after the girls had left with Bear... Needless to say, I was alone... Something, that I should not have been... I really hurt my tail bone, and it is still hard to sit straight up... BUT, life goes on doesn't it??? I am not Courtney's responsibility, but she should have let me know she was leaving... I would have taken precautions IF I would have known I was going to be alone... John was not a happy camper when he found out I fell, neither were the girls... I just look at it like - oh well shit happens doesn't it?

Anyway, my ear infection seems to be all healed now - wonderful!!! I just wish I knew why it is that I spend so many sleepless nights... I am always in so much pain, but the medication that I am given for the pain, well... Besides me not wanting to take it because of it being addictive - Percocets, they make just don't seem to help... Not to mention, I feel like I drank a gallon of cappuccino!!! Holy Cow, if anyone remembers Beavis and Butthead from MTV - Let me tell you what, I am WORSE than Butthead on Cappuccino!!! If I take those prescribed Percocets!!! It is horrible!!! Not to mention, they make me feel like my skin is crawling - I start itching like crazy!!! I don't break out in hives or anything so it isn't a true allergic reaction... It is just that, it's like my skin drys out and starts itching because it is like a dry skin itch; as soon as I put lotion on, the itching goes away... Weird isn't it??? It has to be because it is an opiate or something... This brings me to something else...

I was watching Dr. Oz on Tuesday I think it was... Montel Williams was on and they were debating on whether or not marijuana should be legalized for medicinal purposes... Why and what does Montel Williams have to do with it? You ask... For those who do not know, Montel Williams also has MS and uses marijuana to control his symptoms - the chronic pain, muscle spasms, sleepless nights, etc... Interestingly enough to me, 15 states already allow for medicinal marijuana and 12 more have started legislation to allow for it... Montel said that if it wasn't for the marijuana, he wouldn't be able to be a productive member of society... It has given him his life back and his ability to do things that he was losing very quickly... I can sympathize with him there and know exactly what he means... I have lost so much already since 2007 when I first started noticing the symptoms and the long road to finding out what was wrong with me... I had specialists more or less telling me it was all in my mind; that there wasn't anything wrong with me... Well BULL SHIT!!! There was something wrong with me, I know what MY BODY WAS telling me... Thank God Dr. Scott listened to me and KNEW I wasn't full of shit!!! I wish Pennsylvania would allow for doctor's to write prescriptions for marijuana... Granted that isn't how it is done, but if they would allow for it - they should have to write prescriptions for it just like the do for any other drug - Morphine, Percocets, Vicodine, Oxicodone, or what ever else doctors can prescribe for us... It should be gotten right from a pharmacy... Cocaine used to be used as a medication as well... Sigmund Freud came across it and was actually the first to apply it in psychiatric practice for depression - and became addicted to it as well... it is a true fact!!! Now, go figure, It is an illegal drug!!! BUT, there are medications that are given to children (and adults) that are a derivative of this - Ritalin - to "help them concentrate." I have been doing a lot of research lately on the subject, and frankly I would have to concur with Montel... I really wish something was out there that would help... Yes, I know let me hear it... Let me hear all the governmental scare tactics that have been spewn into our brains for the last 40 + years... I know them all!!! However, I thank God that I have a father like mine... He teaches the truth about things - not scare tactics... When it came to the drugs & alcohol talks when I was a teen, He gave me the statistics, information, and let me come to my own conclusions about things - hence teaching me the truth NOT bull shit scare tactics... I never tried drugs OR drank under age because he gave me the information and statistics... All I can say is, Thanks Dad for educating me the right way about things like this...

So, Lets see... There are two drugs - possibly three I could quit taking IF marijuana was legalized for medicinal purposes... Hello, maybe even all four!!! Since it is supposed to help with migraines as well... So that would actually be six medications I wouldn't have to take any more!!! Holy jumping Jehoshaphats!!! Wouldn't that just be the cat's meow!!! No more Neurontin 300 or 600! No more Percocets! No more Flexeril! No more Topamax! No more Promethazine! No more Imitrex! That would just be wonderful!!! Ugh, I guess I will keep dreaming and keep taking my medicine... Taking the risks that are associated with taking these medications, what ever they may be... Until the time comes...

I know this is a hot button issue, but it is one that needs to be addressed... We live with so much crap - don't we deserve to be pain free - muscle spasm free WITHOUT having to worry about other medical complications from the medications that we are prescribed to alleviate the symptoms we suffer each and every single day??? Our treatments - Copaxone and Avonex just to name a couple - to keep the MS at bay or in remission are enough... Do we really need to have to worry about other meds causing us complications too, just so we can live some semblance of a normal life??? I think not!!! Marijuana can be made into teas, drinks, foods, or vaporized (like as in a nebulizor) and are just as effective as if it were smoked... So, why not try it? I am game, but then again I smoke cigarettes... My one and only vice in this world... Yes, it was my choice even after reading the literature my father gave me... I am so sick of taking all these damn pills on top of this shot every week!!! It is bad enough I have to take my thyroid pill every day, but having to take pills three times a day - four times on Thursdays - is getting on my nerves... I hate it!!! I am so sick of it!!! I am even sicker of choking on the damn things - aspirating on them...

Well, I am done for this early morning... I hope that y'all who read this understand where I am coming from and post comments about how you feel on the subject...

Hugs and Blessings

Thursday, March 17, 2011

March 17, 2011

Well, Happy Saint Patrick's Day everyone!!! It's "Kiss me! I'm Irish" day... This kind of always bothered me for some reason... Even people who weren't Irish always wear these stupid t-shirts and it always makes today, something that is supposed to have serious sentimental meaning - cheap and silly... Granted celebrating - parades and the such - today is traditionally an American invention started in Boston in 1762 as a way for Irish immigrants to remember their roots, it is just bothersome to me that it has to be exploited and cheapened like many holidays or celebrations... I guess I am just too sensitive or something, being I have Irish roots in my family tree... I don't like that something that should be serious and should be celebrated with joy and festivities in a traditional way - not getting plastered and making it cheap... I always have turned my nose up at those t-shirts and ignorant items that make this day seem like something of a joke...

Okay so now that I got that off of my chest, I suppose I should explain what has been going on lately... 

Saturday March 12 - John took me to the emergency room because my ear hurt SO bad I was actually crying... That is a big deal because living with MS you learn very quickly how to deal with pain... Life IS a constant cycle of days of whole body pain then days of no pain at all... When we got there, I told them that my right ear hurt on a scale of 1 - 5, around a 4. My left ear, had fluid in it - I could tell. When I tilted my head to the left, the fluid sounded like it wanted to come out, but didn't... I could feel it... It was like I went swimming, got water in my ear, but didn't get it all out after I got out and dried off... We started going over my medical history... I told them I have MS... The nurse just looked at me, so I repeated myself, "I have Multiple Sclerosis, um MS..?.." So she wrote it down... They asked me if I had been running a fever... "um No, I never run fevers... Do I John... Most of the time I never know when I have an ear infection, Dr. Scott has to tell me... I go in for one thing, she checks my ears and says 'Um, Jen sweetie, This ear is really angry. It is really red!' So, that is how I find out that I have one... But this time is different! This REALLY FLIPPING HURTS!!!" So, turns out yeah I was right... My right ear is all kinds of infected and my left has fluid in it - just like I told Dr. Ted when he came into the room... Kinda like a Dur Dur Pop Tart moment if I ever saw one...

Sunday was my birthday... I felt like crap because my ear hurt... Angie made me a birthday cake - God bless her sweet heart... Courtney and Angie made dinner for the family - we had pork roast, home fried potatoes (recipes to follow), candied carrots... They did a wonderful job!!! However, it was an extremely quiet day because John slept ALL day... Krissy stayed in her room "cleaning" it... Jeffrey, Courtney, and Scotty stayed downstairs in their little "apartment" straightening up... Angie was "cleaning" her room as well, until it came to making dinner... I guess it was because I was dosing off all day too... I can appreciate that, seeing that I didn't sleep at all Thursday night nor Friday night... Saturday night I slept like a baby, but Sunday I was still trying to catch up on sleep... My ear still hurt REALLY bad...

Monday March 14 - Okay, this is plumb ridiculous!!! I slept maybe 4 hours if I was lucky... My ear hurt so bad most of the night... It kept waking me up... I was up and down all night long!!! I called Dr. Scott's office to see if I could get an appointment because I just could NOT keep going like this... The lack of sleep is not good for me... I am going to get sicker or something... No appointments until Wednesday and Dr. Scott is not in at all... So Kim - God bless her - talked to Kelly (the nurse practitioner) about what was going on... Kelly called in a prescription for ear drops to the pharmacy... Oh great!!! This is going to help, I know it! Otherwise Kelly would have made them schedule me in some how - if she had any doubts... So, I gave it an hour and sent Krissy up to the pharmacy to get the medication for me... OMG, they didn't have it yet... 
2:30 pm - The pharmacy still doesn't have my prescription yet... This time I was smart and called... No sense in sending Krissy out if they don't have it... And they didn't... So I lay down on the couch thinking I will get a call anytime to go pick it up...
3:30 pm -  The pharmacy still hadn't called, so John called up as I was napping comfortably... No pain - thanks to a Percocet and being totally wiped out!!! The pharmacy still hadn't received the prescription - not by fax, email or phone call... So, John called the doctor's office. Kim told John that Kelly sent the prescription over very early that afternoon - practically right after Kim called me back to let me know what Kelly had said... John called the pharmacy again, still nothing and made it seem like he was lying about what Kim told him... Yeah right... That would be Buchanan's Pharmacy for ya... This isn't the first time this has happened to me with them either!!! 
5:25 pm - I get a call from Buchanan's Pharmacy, my prescription was in and filled... Yeah, they finally found it - they took the time this time to look for it - that's all!!! So, Krissy went up and got it...

So, that brings us up to today... I am still having trouble with my ear... It still hurts; however, it isn't as bad as it has been... I am praying that it gets better soon... It hurt so bad for so long that the whole side of my head and the ear is tender to the touch... Isn't it funny how a silly little ear infection can cause so much irritation to your head... The lack of sleep has been causing me some minor memory issues... I forget to do things, simple things - like eat... I don't know if anyone else has this problem or if it is just me, but I just don't seem to get hungry very often... It is like that little trigger that tells you that you are hungry and you need to eat has been turned off or something... IF it wasn't for my kids, half the time I would go all day without eating... I just don't seem to get hungry and I don't know why... Then again it is winter time and I do not go outside... It is hard for me to get exercise because the cold throws me into a tailspin... I hurt so bad all the time and it is so hard to get motivated to do anything in the cold because I am so stiff and uncoordinated... Maybe that is why I do not get hungry... I don't know...

Anyway - Recipes as promised:

Home-fried Potatoes

1 medium potato per person - peeled, diced, and boiled until fork tender (like for mashed potatoes)
1 tsp sea salt
1 tbsp Parsley
1 tbsp Basil
1 tsp Oregano
1 1/2 tsp Thyme
1/2 tsp Ginger
1 tsp Garlic powder or 1 tlbsp minced garlic (can get at store in Fresh Veggie section)
1 med Onion - Red onions go nicely - diced
EVOO - Extra Virgin Olive Oil - the darker green the better...
Black Pepper to taste


While you are waiting for your potatoes to boil up to fork tender, peel and dice your onion... In a large, deep sided frying pan, run your EVOO around the pan about 4 times (it's approximately 2 or 3 tbsp of EVOO) - turn on pan to med heat to warm oil. Saute onion until tender. Add garlic (minced, fresh (about 3lg cloves-grated), or powder), Parsley, Basil, Thyme, Oregano, and Ginger to wake up their flavors - stirring constantly for about 2 minutes. Add potatoes, sprinkle with about 3 more rounds of EVOO - Stir... Sprinkle with salt and pepper to taste...


Mom's Candied Carrots

2 large fresh carrots per person. Gage amount depending on carrot size - should equal out to be 1 1/2 cups per person...

1/2 stick of REAL butter (unsalted)
1 tsp REAL vanilla
3 tbsp light brown sugar


Wash and scrub off the skin of carrots. Slice carrots into slices that are consistent; use a slicer if you have one making it easier. Place in a sauce pan with enough water to cover. Boil until fork tender - Drain. Melt butter in the same pan you cooked the carrots in. Add the tsp of vanilla and brown sugar to melt together; stirring constantly. Add carrots to reheat and coat with "candy." Use sea salt and pepper to taste... For a special twist, add sliced almonds or walnuts and dried cranberries... These add nutrients and vitamins we need as well as a delicious surprise....


Pork Roast Rub


1/4 cup EVOO
1 tsp sea salt
1 tsp Thyme
1 tsp Basil
1 tsp Pepper
1 tsp Ginger
1/4 tsp Nutmeg
1 tsp Rosemary
1 tsp Cumin
1 tbsp Balsamic vinegar


Cut some of the thicker pieces of fat off of the loin and dispose of it... Fat YUCK, it isn't good for you!!! Take the knife and poke holes into the loin all over as so the rub will get down into the meat... Stir up the rub so the vinegar is well incorporated into the oil (these will continually separate)... Pour the rub into a gallon sized freezer or storage bag (freezer is best because it is heavier duty) and place the pork loin in the bag as well... Make sure you close the bag up tight, expressing most of the air... Shake and rub the marinade into the meat while in the bag - this little trick makes it easier for you (I have troubles with my hands because of the MS) than to try and brush it on or rub it on with a basting bulb and a spoon... With the loin in the bag, you can lay it on the counter and roll it back and forth rubbing the marinade in to the meat that way... Don't even have to pick it up really... Leave in bag - rubbing frequently - for an hour or more depending on your desire - bake at 350 for 2 hours in a covered baking pan... Will be moist, juicy, and mighty tasty...


Well, this is all I have to share today... Happy St. Patty's Day everyone!!! Enjoy the recipes...


Hugs <3

Thursday, March 10, 2011

March 10, 2011

So this is a late one... It is almost the 11th, but for now it is still the 10th... This cold is really beating me down physically... I didn't roll out of bed until 11 am this morning and still felt like I could have slept for another 3 hours... BUT, the damn borough was out cleaning up the snow piles I think because all I could hear was back up alarms and the roar of diesel truck motors... So, out of bed I rolled my tired body... It was really hard to walk today for some reason... I don't know why... The temperature was warmer, but it was raining... Maybe it was because of the rain... "Blame it on the rain, that was falling - falling. Blame it on the stars that shine at night..." Okay so I am dating myself by writing a line from an old Milli Vanilli song... Hey, can't help it - I liked them, lip syncing or not... They had some really good songs... Dang, now I had to go find this song on You-tube...

I am still having trouble with my phone - damn Straight Talk any way!!! They have my account all Messed up - and trust me I am being REALLY nice here!!! I have my old number back, but I can't receive any calls into my phone now... Then the guy told me I didn't have any time for my phone - well let me tell you, I LOST IT!!! I have 20 some days left on my card I bought at the beginning of March, AND a new card that is to be in reserve!!! OMG, lets say I am LIVID!!! A whole week to get this shit figured out and I am still without a phone more or less!!! UGH!!! 

To top it ALL off; tonight is shot night for me, and anyone who has MS and is taking Avonex or any of the Interferon treatments knows what that means...Yeah, I feel kinda flu-ish - like nausea-ish, but I took Ibuprofen and Promethazine (for nausea) so maybe I will feel better in a bit... At dinner time, we splurged and got pizza - nice for a change - I broke a tooth eating what we call the bone - which is only the crust! YIKES!!! So now, my mouth is killing me, right along with the rest of my body... Okay, so the rest of my body pains I am used to and can more or less handle - they are all part of the MS and I have had them for so long, I can just use mental tricks to over ride the pain... However, this pain in my mouth - OMG, I can't deal with!!! The piece of crust was so hard it was like it had something in it... I couldn't even break it pinching it between my nails or cut it with a knife... Now what the hello do I do? It is 7:30 at night and there isn't a dentist open this late at night... I have to deal with the pain all night long!!! I wish I had some magical wand to make it go away!!! I took one of the Percocets that are prescribed for the pain I have in relation to the MS, but it isn't working very well... If I wasn't in so much pain, I wouldn't have taken it because it means - NO SLEEP TONIGHT!!! That is the last thing I need being shot night... I don't know what it is about that pill, but it hypes me up - like I drank a cup of coffee or took some drug like Speed or something!!!


To my friends that I found on Twitter, Facebook, and even here blogging - I received an email from Biogen idec the makers of Avonex. They have a brand new website that offers individuals and families with MS support and individualized support plans to keep you on the right the right track and help with your medical stuff. It is really neat. I went on and checked it out first before deciding to add the link to my blog. I won't ever add any information or websites that is misleading or not helpful to us. It is vital to me that I share information as long as it is only POSITIVE AND HELPFUL. This website is both... Please go check it out for yourself.......http://activesupport.biogenidec.com/PublicHome.html..... 


If you are reading my blog and you ever want to respond to something, please feel free to do so... I will always respond back... If you want to ask questions, know that you will always get an honest answer in return... This blog isn't just for me, it is for you too... We need to support each other in our path through life... Strangers are only friends we haven't met yet...  When I have a good recipe to share I will give it to you here... Please feel free to use it... I only cook with good healthy foods... Nothing from my kitchen is boxed!! My philosophy is If my great grandmother wouldn't recognize it as a food, I do not use it... She never used oleo/margarine so I don't use it... I only use butter, no salt of course... When you have MS, you have to be careful with what you eat - so I am told... Well, I have always been cautious with what I put in my body and with what my children eat... I have always watched preservatives and the such... NO artificial sweeteners - they are worse for you than real sugar is, believe it or not... Not to mention, children with ADHD or seizure disorders should NOT be allowed to eat ANYTHING with any sort or artificial sweeteners in it... It can cause complications with children with these disorders!!! I should know, my eldest daughter has both - I have done the research - statistics are scary...


Well, I suppose I should sign off for tonight... I will try to write again more later today -12:53am right now... Have a blessed day... :-)

Wednesday, March 9, 2011

March 9, 2011

Well so much for my birthday present from John... He got me a nice new phone, but guess what - can't use it because stupid AT&T doesn't supply cell service in our little area called Elkland... Of course not... So, after 3 days of trying to figure it out - on and off the phone with tech support - and I am talking about hours of being on the phone with them - I finally found out... UGH, I am so fed up and frustrated that I sent the damn thing back to the company... NOW it is a whole new set of challenges... My frustration level is at maximum capacity and John is afraid that I am going to have a relapse because I am shaking and my hands are all tingly and going numb... WTF???

So, being frustrated after following all the instructions, I called tech support again... FINALLY, I got someone who actually spoke without an accent, I could understand, and they could understand me!!! I was so tickled I almost started crying!!! My frustration level is so high that I already have a tension migraine and feel like I want to cry... I told this young gentleman named Christian, that I was so happy that I could understand what he was saying and that my frustration was so high that I could cry!!! I just isn't funny any more... No one was explaining things to me, and if they were - I just couldn't understand what they were saying to me, and it isn't like I wasn't trying to... Okay, these two paragraphs make me seem like I am a total heel or prejudice - TRUST me, I am not either... I am not that type of person, and I believe that ALL are created equal - no matter what... All people are my brothers and sisters!!! We ARE ALL HUMANS by the way... But, I don't like it when I can't understand what someone is saying to me over the phone and I have to keep asking them to repeat themselves... It isn't fair to them and makes me feel like I am an asshole for doing it... Or if I have to keep repeating myself - I feel like an asshole because I feel like I am not explaining myself good enough for them to get it... It isn't a matter of prejudice, it is a matter of communication issues on my part... Now I feel like an asshole for even writing this, but it is a matter of clarifying...

So, off of this for now before I make myself feel even worse about today than I already do... My cold is getting better I think - maybe not... My ears hurt like hell, but I don't know if it is because of infection or if it is because of something else... My left ear feels like there is water in it or something... It is really weird - and feels like it is trying to drain when I am laying on it or I tilt my head to the left... My right ear is starting to feel that way... I am thinking I better be thinking about getting to the doctor if they don't start feeling any better soon... It is really starting to drive me nuts!!!

Monday, the gentleman from the Scooter store was here to measure me for a power chair... The physical therapist that came with him was really nice to me and thinks that the power chair was a really good idea... I don't know about that... I am not sure that I like the idea that I am going to have to use a power chair once and a while to get around... That is kind of a sobering thought to me... Kinda hits home if you know what I mean... I knew eventually this would happen, but not so soon... I am going to continue to fight the good fight and push as far and as long as I can, but IF I have to I will use the power chair... I don't like having to be reliant on the kids and John when I am having a bad day to get around... I don't know... I just don't like the idea of it...

Monday, March 7, 2011

March 7, 2011

Okay, yesterday was a really bad day... I didn't feel like getting on the  computer at all... All I felt like doing was sleeping, but I didn't... Instead, I separated and sorted beads - glass beads... It snowed all day long and I hate snow!! Matter of a fact, I hate the cold weather!!! I don't like the dark days of winter and would so much rather be anywhere that is warm - even Africa at this point!!!

Many people who have MS do not like the warm/hot weather... It makes their MS symptoms flare up... NOT MINE!!! I rather do better in the warm/hot humid weather!!! Hell, I love it!!! Not even the side effects - ugh, the flu like symptoms - from my Avonex shots bother me in the heat and humidity... I am able to get up and get going... How I long for those warm or hot humid days of the summer!!! I don't care if it gets to be 100 degrees in the shade with 90% humidity - not a single soul will hear me complain about it... I don't care if I have sweat running down my face when I step out of the swimming pool... I can't handle this cold any more... I swear NO ONE will hear ME COMPLAIN!!! Granted everyone else around me will, but I WON'T!!!

I caught a cold from somewhere, and that is part of the reason why I did not feel like doing anything yesterday... Aside from the snow coming down... I don't know where I caught it, I am so careful when I go out in public because I know if I get sick, I am going to get REALLY SICK... That is what I am REALLY SICK... If I laugh, I get light headed and dizzy, even if I am sitting down... UGH, I just don't know... So, it is Nitequil for me during the day and night... I hate this!!! If you can't tell, I am in a mood... And it isn't a nice one... Yep, it is one of those days, but it doesn't help that I am sick... Having a cold makes me feel very miserable - always has and probably always will... Seeing that I will be 41 in 6 days, I seriously don't think it is going to change now... I hate it when post nasal drip makes my ears hurt... I can handle anything about a cold - the stuffy nose, coughing, and sneezing, but I can't handle the achey sore ears or the pain in my face from the pressure in my sinuses... Enough to drive me nuts...

So that was yesterday and so far today... I am having another day like yesterday, and do not expect it to change... John and the kids are making me rest because of being sick and running a fever... I don't have patience for much of anything because of being sick so they know that it is best that I just rest... I feel so horrible!!!

Such as a day in my life.......

Saturday, March 5, 2011

The first day blogging...

Okay, I know that blogs are nothing new... Seems like everyone is blogging about this or that... However, this is something that is near and dear to my heart... I am doing this maybe because it could be therapeutic for myself, but in hopes that others who have Multiple Sclerosis will see that even though this is a horrible disease, really it isn't the end of the world.....
 Players in this game I call my life are;
John, my husband                                         
Jeffrey, my 23 year old son                            
Courtney, my son's fiance
Krissy, my 18 year old daughter
Micheal, my 16 year old son
Angie, my 15 year old daughter
Scotty, my grandson
These are the people who are involved in my everyday life, and that is why they are being introduced. Others will come as they take part in the daily situations, but these individuals are the ones I will speak of mostly. So with introductions complete, lets get started with the daily - or mostly daily - journal of this little thing I like to call life... MS may be a horrible disease with no cure, but trust me - it isn't a death sentence...

When I first started having troubles, we didn't know what to do. I kept going to my doctor and she was starting to feel as helpless as I was. I told her both specialists that she sent me to made me feel like I was a hypochondriac, which I was not! Being a student of psychology at the time, I knew better. I wasn't looking for attention from doctors - hell, I got all the attention I needed from John! So she sent me to see Dr. Britton, who ran three different tests - which concluded I had Multiple Sclerosis. So, Okay - "where do we go from here? What are my options? What treatments are available to me?" I asked him. I didn't freak out. I didn't cry. I didn't scream "WHY ME?" I was calm, cool, and collected... I think I freaked Dr. Britton out because of being so calm about his diagnosis... What is the sense? None. It wasn't logical to me. It is all part of the human condition to become diseased - it is in our bodies chemical make up. No matter how much we try, we can not avoid diseases! It is impossible... It is, however, in our power to become knowledgeable about different treatment options and make a well informed decision on what is the best course of action for us to take for ourselves... My family took the news harder than I did, and I am the one suffering with the disease! I am the one who has to take the weekly shots, take all the meds every day to keep the symptoms in check!!! Yet, I am the one who is calm and accepting about it... WTF, I don't understand why everyone is upset about it...

So, anyway that leads me to this point in time... I have tried Copaxone - not a good match - I was allergic to the medication! YIKES, did not like the side effects from that medication at all... Now, I am taking Avonex. This seems like a good match for me, except I don't like the needles... But, I only have to take the medication once a week... However, when it is cold and damp, I seem to have more down days after taking my injection - which I do myself... I don't like to feel like a burden to anyone, and like being independent... When it is warm weather, I don't have a down day after my shots... Friday (shot day is Thursday night) I am up and at 'em - ready to rock and roll!!! But I have noticed this winter, Friday even sometimes into Saturday, I am not feeling well and all flu-like icky gross... Goodness, I can't wait until the warmth of the spring and summer get here!!!

For those who may read this who have MS - you have to get this in your mind, MS is not a death sentence and it surely isn't the end of the world. Sure you may not be able to do things you once were at the speed you were used to, but perseverance and determination are all you need. You need to take control of YOUR medical treatment. If you are not happy with your medication, don't be afraid to speak up. It's YOUR body! You are the only one who knows you best - no one else!!! Your doctor can only make suggestions, but ultimately, it is YOU who has the say so. If it isn't working - you can fix it. Remaining positive is a key factor in helping yourself.  You have the power to help yourself. Find a support group or others around you who have MS. Start your own support group. There are things about yourself you would be surprised you are able to do that you didn't think you could do or know you could do. Make a list of your talents/hobbies - you will see that life isn't as bad as you first thought. Then, you always have me that you can respond to - I will check and write back... At least I think you can do that with these blog... IDK, this is my first one... Hugs, blessings and best wishes