love the name of there album: Cream and Bastards rise!
I cant believe the medical nightmare ms'er get. Faulty blood sugar strips!!! Damb it! It got me thinking about what drugs I am putting into my body...What are the down sides and can I get a chemical break down of what effects each drug will give me! Is the balance right? Does the chemicals I put in outweigh the long term effects?
Yeah we have Doctors and they have spent time to get to where they are. There are educated in fields that I am not....But if all I am injecting each morning is water.....You get my idea?
What is Copaxone(glatiramer acetate)? Who makes it and what else do they do?
24 does work! hehe! If there was somewhere where all this information can be collected so researchers could use this information? I found 1 in Germany but it locked me out after 5 mins...to be honest I am not sure if it was a public database or not....well it was in German! I dont want to get in the way of any researchers....or do I?....No I am not going to break any laws but I am scared of what the next step is for this disease and will not be dragged down by it! a faulty blood testing kit is only the first step. I am not looking for blame, revenge or someone to shout at. I do think we need to do something!
I do rock! I will rock! Bring on the rock!!!!!!!!!!!! This one is for Steph!
What a bizarre day! I left home with the intention of doing 2 things. Go to the docs and get him to stamp the insurance form that pays off my (huge!)loan and get to the local job centre and hand in my last pay slip so my claim can go through....And it was a great day finished by 11am. It was a fantastic trek!!! Got out my door and the sun was shining. I had enough money to get there and back! I got to meet the new stand by doc and I think I scared him with my positive attitude!lol He stamped the form and wished me well, the girls in the surgery smiled at me! I left for the job centre the sun getting hotter by every step. As I got closer the women in the street were removing clothing(I love the summer!!!Not so good where I live tho!hehe!) down to there t-shirts. I went in to the busy job centre and they rushed me to lift up to the first floor.....And that's were I met a security guard(and this is the best part!) she was an person who used to work for the same bank I do! I held in my laughter untill I got out the building. God bless ya Sara you made my day! That and I had £10 left in my bank account!I got back to the house and I am going to relax and watch some 24!
Today could only be made perfect with a kiss from Jen! Awwww sick I know!xxx Love ya baby!
Got a lot of weird thoughts this morning.....I have an appointment at the hospital to get my ass fitted with a pair of wheels....I thought I was going to get a car one day. I had a car picked and everything for my future. A ford Escort, green...Convertible just like Em's....But....Its now just a pipe dream! Something else this disease has taken away from me.
What you gonna do eh!
How can I look cute in a wheelchair? I don't want to look like the cute baby that people stare at. I had enough when I fell over and people looking with sympathy when I say "I have ms!". What more can you throw at me? In the words of Bruce Almighty "Smite me, oh mighty smite'r!".
It will be handy, it will help......Its a social stigma but IT will help.
Sorry no musical link today just raw expression....Needs some good honest cheese on toast GGGGGGGGGGGGGGRRRRRRRRRRRRRRR!!!!!!!!!!!!! ******Korn-Twisted****** Got a GP visit to do on Thursday to stamp an insurance form...Got more Copaxone coming Friday morning...Did have a weekend planned with Jen, that's now been cancelled so I have a weekend to myself. Maybe I can steam roll something in my wheelchair!!! I have some 'good' news though... Jen found a form for me to fill in so I can get free travel on buses and trams in Manchester, If only I had that before I gave up work!!! My fault I know....No one is going to do it for you are they! So if you have ms....or are disabled then check with your local travel agency....You never know eh! I just need to get a passport picture for the pass! Then the local world is my....Playground! Oh Joy! You can get some things for free if you work for it...Sorry 'look' for it!hehe Hope you are all well! Dave
*****After all the drama...they turned up to get me and I didnt hear the door bell as its broken! Going to be re-appointed!*****
Linked to yesterdays music by....well they have both played together! I am back on busy days this week. I have the physio coming this morning to double check on me(which is nice!) I have the wheelchair fitting tomorrow!(Yey!Pimp my ride!lol) I have so much paperwork still to do with regards to benifits(I have recieved 2 back for minor errors) they are so picky! I have Copaxone coming today and the biggy....(insert drum roll here!)....I have to get a shave!hehe!
Going to stay at Jen's house this weekend coming(yey!) as her parents are away looking for a new house down south(Booo!) so that will be strange. A change thats for sure but I am looking forward to it. I am still in finacial hell but its not scaring me as much. Its good to get mail back and I feel like they are doing something. I still have work to do so enjoy the tunes for now!
Hope you are all well! Dave
****Oh forgot to say! I will be looking into alternative treatments/therapies for the next few months so watch this space!
and it kind of reminds me that I have the jump next month(29th). I have been quite relaxed at my parents. Just sat reflecting about life and what my next step should be! You might see some hippy feeling coming out in me with a tinge of rock! Anyway enjoy it and I will tell you all about it soon!
the link....toxic water and polution of the world may be!
I am at my parents again recovering...I havent been sick or anything its just that stress will knock me on my ass anyday day soon and I want to be prepaired for it. You know the score! Anyway I have to get back to relaxing and chilling out!
*******NIN:La Mer********Wanted to put a track called:Something I can never have. Got to go to the doc's to pick up more pain killers....this would be so much easier if they delivered. Its a bit of a trek for me now! I have to get going as I have a busy weekend ahead(yeah right!). Slept in till noon today....I guess that shows me eh! 24 hang over!
At the doc's today I have to read a medical report that is being released to my job.....JUST SO THEY KNOW I AM REALLY SICK OR SOMETHING! Sorry I hate admin! Anyway enjoy the tune. its one of my favorites, I think it has been for a while!
And just for the record it was Sinead who got my into 24!
Hope your all ok! Dave
*****Jusy got back from the docs and reading my medical report....my god I am sick! Got my pay check from work today too....Balls to that! I need 4 of them to pay my rent!!!!! FFS!!!! I going to close down the share savings plan I had with work and that should cover me for a while! DAMB IT!!!! The next few months are going to be the darkest months of this ms HELL I have ever had! If swearing comes back in I am sorry but come on!! GIVE ME A BREAK PLEASE!!!!
***********ODE TO DIVORCE (Regina Spektor)************ I love that tune....Don't know why Pandora linked it to Dresden dolls radio huh! Guess it works eh!
The reason I am tired....Well I did one of my goals last night! I watched 24 season 3 within 24 hours! I know how sad is that. Dedicated fan...Not really but I do like a good thriller eh. The thing that made me laugh, there is only 23 hours of viewing. I feel conned and thrilled at the same time!hehe
I have had 4 hours sleep and I want to start the next season now! Season 4 is just sitting there in my collection but if I start it I know I will be gutted that I dont have season 5 yet. I have paid for it and it should be sent to me when released in the UK(September according to Amazon.co.uk), Its on tv at the moment but I wont watch it. I can do it to myself. Waiting a week to watch the next episode....ARE YOU CRAZY!!!!!
I need to get a life eh! I have things to do today that are going to be put on hold because of 24. I think I have a problem....its not to seriouse tho(the ring tone as well dave...hmm!)! I know I need more some sleep and its not healthy. What am I saying....I have never eaten more fruit in my life. Well you dont have to cook fruit do you!!!!
I think getting some rest might be a good idea. Eat normally when I wake up and excercise too! Jack Bower would do it!lol(he would smell so bad either dave)
1. Get my ass out of bed! 1. Copaxone injection 1. relise that I haven't washed face or brushed teeth 1. Wash face 1. brush teeth 1. get dressed 1. get mail 1. cry 1. Read post 1. scream 1. Cry lots 1. Ring work aplogise for not tuning up as arranged(no money to get there!!!!)Engaged! 1. Ring GP and ask why he hasnt returned my medical record to the Job centre plus(this in it self was a mission, I need this claim to go through and they need access to the records) Speak to reserve doc as mine has gone on holiday!!! 1. cry in pain! 1. attempt to fill in insurance forms.....again! Fail 1. Ring work AGAIN....Speak to team manager and tell her of money difficulties and progress of claim forms and all issues of my life, request work pay for a cab...Errr No! 1. Turn on music through Pandora.com 1. Get a coffee 1. Light a ciggerett 1. Relise I can do more than one thing at a time now with the Nicotine cursing through my already broken body. Cry! 1. Do Blog!
Right I am going to watch tv (24, day 3, my favorite so far!) and will do the insurance forms later today. Its lunch time and I havent eaten yet!! That is typical morning! 1 thing at a time eh! I feel like this:
***SHOT YOU DOWN (BANG BANG) (Audio Bullys)*** Great tune messed up! Hope you are all well Dave
*****THE FRAGILE (LIVE ON MTV) (Nine Inch Nails)***** She said my right leg has lost some strength but left leg is a bit better than last time she saw me...Thats the reverse of last time, Bizar! She also told me to star working on my excersises a bit more as she could tell that that I havent been doing them! I told her why and she agreed that my job is taking the piss with not helping me deal with the stress but she said "Its your health so YOU BETTER LOOK AFTER YOURSELF FIRST!!"
Great idea eh! Hope your all ok and Vix gets better soon!xx Dave
I have the coolest dad in the world and I love him and his music collection very much!lol The man I want to grow up to be!(but without the kids!)He is always there for me if I need him. He is the man that has shown me how to deal with disease with a smile on my face and he is a music guru.....Just like me!hehe! I love him very much! Thanks Dad! We will have to grab a beer some time soon! He gave me Frank Zappa, Micheal Brecker, Al De Meola, Led Zepplin, Eric Clapton, Captain Beefheart and mass Jazz influance to everything I listen to today!
Try some of this!
Ouch Podcast added to blog roll today>>>> Anyway Hope you are all well! Dave
Hi I am Dave....I am a geordie....Sorry bout that!
******COCHISE (Audioslave)******* Another thankyou to the dreded one! Cheers Bobbeh! These guys are top!
I had an amazing night last night. Its getting so hard to say goodbye to Jen every time she goes home. We both know the end to our time together is coming soon....We try to skip around it and don't say much about it, but we both know. I really wish I could be a man about it and marry her. Take her away from all the crap in the world. Illness sucks the big one but I can still wish eh! She deserves so much better in her life than me! If you could take me babe.... I love her so much!
Anyway....I got a phone call from work today and gave them a background of whats happening, physio, wheel chair fitting, sick notes, ect ect! And I was wishing I could go back to it...I want to pay some bills and save for a couple of things but the shock I would get from people if I did would kill some of the older ladies. Should I try??? The money would be nice but the stress would kill me if they remove any support mechanisms like last time! The taxi's can be claimed for if they do it! I cant do it as I am not a buisness and I dont get reciepts or claim tax benifits like they can! Why do I worry about it still? Damb it!!!! Hmmmm!
I hope my mate gets me drunk tonight! Retirment is going to be a bitch isnt it! Hope you are all well and better than me! Dave
Vox Vermillion:the physco song. Just rocks I love it!
I have just had a call from dept recovery from my bank 2nd call this month. I reminded them that they have to send the forms for my payment protection.....again! Dept eh!
****Just thought I would do an update see'ing as I am drunk now Jen is here! She spoke to Jamie on msn earlier and I know there is going to be trouble because of it! (calm down baby have a bit of cheese!lol) I love you both but calm down and dont talk to each other to much eh!
Sorry I havent been here for a while! I am still alive!!!YEY!!!
*******SHOPPING TROLLEY (Beth Orton)************
Beth rocks!!! Loving her work and it has really helped with keeping a smile on my face!
I have had a week of relaxing and healing my body for the future stresses that this pigging disease brings. I want to say a big thankyou to my younger brother...HE KICKS ASS! He has made my last week worth living and I love him to bits! Thankyou Paul you are a star...The BFG is a cuddly,lovable bloke and I wish him well.....and er girls...HE IS SINGLE!!!!lol Just dont touch any bird I haver been with dude!
I am back to my own flat now so I will catch up with you all after I have checked my mail and begged forgiveness to all the companies about my bills! Just hope the electric isnt turned off for a while! I still have to chase up on what I can claim, 3 forms have now been sent out and I am praying that they come through so I can say I did it and survived!
Jen is coming round on friday night and the boys will be here saturday so I should be happy for a bit!
*****ANYWHERE (TWO LONE SWORDSMEN REMIX) (Beth Orton)******* I quite like this girl... Kinda cranberries with a pulse....The fact is she is cute and she has struck a cord with me. I don't know why I like her, I just do. She is no Amanda from Dresden dolls but its the music I like! I think that's the point isn't it? There is a track called shopping trolley that going to be on here tomorrow(well broken wheel!!!!!) and I think you will like it.
what's new with me....My nanna bought round a clipping from a news paper yesterday and it wasn't a clipping about how to cure ms or something like the usual stuff caring family members bring. It was an advert for a wheelchair she found in there news paper. It turned a light on in the dark place in my head. Yes Dave you are going to have wheels. I have been hiding my fear of wheelchair's.....Haven't I? I guess not but I don't think I am afraid of anything that this disease throws at me now. I know its going to happen so why should I be afraid of it anymore? Just got to grab the best time that I can with what I want......Makes you think doesn't it! Should I have been doing that already Or has the past history in my social life caused the situation I am in today?
You know.......I am happy to wait and find out later. I am going to have loads of time in the future to think about it! My brain is still active(I typed Brian 3 times here!lol) so I may as well use it eh! Dave the philosopher...hmm maybe. Star of Daves comments please....this should be fun!
I might be a crusty old rocker...but I rock with the best!
******STUDIO FOOTAGE (Slayer)*****
Sorry I havent been here for a couple of days....But sometimes you need it eh! Just to kick back and rest from any stress at all! You know? Maybe its time away from the kids. Maybe time for yourself to lick your wounds, do your hair or just look at the celing! You know? I just spend some time doing it all! Lick my wounds, relax, spend some time thinking and building myself up for the next step in this hell like world of ms! I think I am ready!
I got a phone call from my GP today to discuss what I want in the letter he has to send to my nero. This letter will be the starting point for my nero to write the retirement letter! How much paperwork do they need??? Thats not the last one either! I will keep you advised to what happens next but at least he is going to write it! I can use this letter(or copy of!) to aid my future claims!(only 6 weeks to go till the first one pays out!). I have always called the unemployed "the great unclean!" and I think its time for me to say sorry to anyone who I may have said that too!lol
Anyway...I am here and not dead yet! So get ready for me....to..errr do some work!!!
Bills! Arg! Well ok one bill! But you need gas right?lol!
Oh I read this today! Very interesting read and it sort of explains tysabri and how it works too!
I am spending most of my days watching TV! Friends and 24 are such an entertaining day!
The intelegent mind is never bored.....ha! Is it going to be like this forever?? I can just waste my life watching 80's movies and american sitcom. The only thing keeping me sane is music! Here have some Flash dance!!!! Oh god I am doomed! ******FLASHDANCE (ALTERNATIVE VERSION) (Deep Dish)***** Hope you are all well! Dave
Just got a letter back from the Jobcentre plus people who are dealing with one of my claims(Income support). It just has my wage slips in it that I sent for evidence and I am thinking its going to be some time before they pay out on it. I have already lent money of my father to pay my rent and I worry too much already that my money belt is getting a bit light in funds. Do I worry to much? Shit yeah! I am not used to asking family members to help me pay for stuff and they are helping more than I want to at this stage. I just didn't realize ms was going to finacialy knack me aswell. I have never been the greatest with money in the first place(there I said it!) but I think I better get great at it soon.
Cheers for this Kim! I told you yellow isn't my color!hehe its very warm here today and I know its going to be hell going out for a walk but I know I have to do it Just to show it off! I also got a letter from hospital saying an appointment has been made for me for a wheelchair fitting.....haha! 28th of June...I cant stop laughing! Daves ass needs to be fitted! My ass will have wheels!lol! Hope you are all well! Dave
****Update at 15:00 I went to the shops in t-shirt above and I have so lost my 'cool'. Not because of the t-shirt either(I was asked twice where to buy one!!!)! An old woman on the bus has the same ring tone on her phone as me. The sound sample is the CTU ring tone from 24. I will never live it down will I? I answered my phone!!!!! Dam it!
I am still happy. I am still in pain. I am still in love but....I know it all has to end soon. Next weekend is my dad's bithday(monday!) and I am going back up north to stay for a couple of nights. I have loads to watch on dvd this week as my little bro is being a god send with samples from his collection. Its going to be a start of my journey to the slow life, as if it hasn't started already.
I got a letter from work saying that they have recieved my letter requesting invalidity benfit from them and they should pay out (if approved!)in 6 to 8 weeks.(oh joy!) I dont know how I am going to pay rent over the next few months and I know I have more forms to fill in claiming the insurance to pay off all of my credit agreements. They are all protected but require a docters stamp to make sure they pay out! I have more work to do.....But I know I have to do it as I dont want my family to pay out for my debt after I am gone....I know sorry, but it something playing on my mind. Its something I want covered...Depressing I know but I am not going to live forever am I. I do feel like I am going to do something impressive before I have to leave my mortal coil behind. Its not yet tho so dont worry about me, I will be here for a good 30 years or so! I just hope I have somewhere to lve thats not a doss house.
Jen has just left and I won't see her for 2 weeks. It sucks! The impeding finish seems to get closer every day. I know we are keeping are eyes open to the future but it still sucks. I want to make her happy. We will see!
I woke up this lunch time feeling refreshed and worried!
Yeah I can't believe it either. Lunch time!!! I slept well and feel ok today. It must be eating correctly or something. Maybe its the 3 beers I had at the weekend....No that can't be it. Maybe its the jazz or something...no thats not it....I have the usual pain from you know what so thats nothing new. Jen is coming tonight so I will....no thats not it. I guess I am happy....Woah thats it. Is it that easy? You wake up and except your life and get on with it. Hmmm This doesnt happen very oftern. Clarity with PMA! Thankyou goddess.
Anyway todays music day for me. Just taking my time perfecting being a FREE Dave. I really cant wait to see Jen tonight....she is the reason I put on moisteriser!lol!
I wanted to put a tune on today... Nine Inch Nails:Every day is exactly the same, but I couldnt find a vid for it.
Jen quote will be used for a title tomorrow, Just wait up for it she rocks! Be happy people! Hope you are all well Dave
Back and I had a top weekend! The sun is getting hotter!
*****HIGH AND DRY (Radiohead)******
Dave the quadraped is hitting me hard! Walking to go anywhere has to be climbing now. I need to hug the walls to get around anywhere. Its like my body needs the extra security of something solid....Worrying but I feel I can cope. The extra work I have done this weekend is building my arms up a bit. I am going to need it with getting the wheelchair soon. I am looking forward to getting out the house and going to the pub! That's my goal I think. I need to keep goals don't I? Life seems to be slowing down some and I like being a child and being cared for! I except any help from anyone and I no longer feel any shame in doing so. I do feel like I want to do something for me tho! Learn a musical instrument or something! We will see eh!
Anyway I had a great time at the weekend and hope you did too! Hope you are all well! Dave
******FULL SET (Dj Logic)****** This is a long Jazz session....Enjoy! I do like it alot! The sax a phone is a lovley instrument. With my life slowing down I have more time to get into my jazzy side so you may see a different side to my music collection. Slowing down yes but still have life in me! I have a weekend booked with the family so its going to be a quiet one I think. I need some downtime from a busy week of doing nothing. Well not nothing exactly. I have sent of claim forms for future money coming in. I just hope I can survive on it. I relise that the buying music thing will have to stop but I have got new music coming in all the time. I will be able to entertain myself one way or another. I might have to cut back on the drink front but I knew that was coming anyway. I dont even mind the social life going down hill either.......I am going to get wheels yey! For once in my life I will be able to get out the house on my own and do my own thing!
******DANI CALIFORNIA (Red Hot Chili Peppers)****************Wish I was in Califonia!
Just got back from the shopping centre this morning after posting 2 claim froms.....I dont have any cash in my wallet at all, so a bus was out of the question! 1 mile round treck. I got a lift the last 300 meters from a stranger again. Akmed said he had difficulty walking a month or two agao and he felt sorry for me as he knows what pain you get from a broken leg... I didnt tell him what was wrong with me and thanked him for the help. I am in the flat now and everything is sorted....Well ish! It will be easier in the future(fingers crossed!) and hopefull the bills won't mount up. I got rid of a red bill this morning! It wasnt for me, it was for the last occupant but they were warning me that someone was coming round to collect. I have had to sort the last two like that and if I ever see that guy that used to live here I will kick his fat ass! I hope the claims come through soon as I am bouncing on the dark side of skint!
I am so proud that I can still walk as far as I have this morning. I rock!!! I am all that is MAN!lol well maybe not eh!
24 is still on and its getting excting again! There is not many series that keep my attention as much as this.....I have another 3 sereis to do yet! That should keep me interested untill september when I get series 5!(its pre-booked so I dont have to worry about it!)
Right I best get back to it! Hope you are all well Dave
P.S I have just noticed my hit counter is over 10K wow! ! 1 goal achieved!yey!
Name: personallog! Home: St. Annes, Lancashire, United Kingdom About Me:
I am 6ft 3" skinny and not well. I was diagnosed with ms in 2004 and I would like to speak with others who have ms. I have a want to raise money for ms charities. We have to find a cure for this hell!!!!
See my complete profile