Rosebud\

merry xmas to all!
well the big day is finally here and i have to say what a let down. ya know when ur little you can’t wait to get up and rip open all your gifts then u grow up have kids and its exciting watching their faces as they open up theirs. then the day comes and kids are all grown up, they move out or join the military and suddenly christmas morning is no longer joyful its down right depressing! but hey thats just my way of thinking. you see my youngest joined the marines, my middle who is married and has a 3 month old, is moving to texas and my oldest is also married with 2 kids. i know i should be enjoying my grandkids but i am struggling with “empty nest syndrome” and therefore it makes enjoying the grandkids a little difficult. so on the “joyous” day of the year it doesn’t feel so joyous!

tis the season to be merry, my ass! whats there to be merry about? i go to bed depressed and wake up depressed. i know why but theres nothing i can do about it. you see my baby who just turned 21 is at Parris island in South Carolina for basic training in the marines, my middle son is getting ready to move to Texas next week with his 3 month old son and my 4 year old grandson keeps telling me he can only love me a little because i don’t walk, but, if i walked he would love me a lot. who is teaching him this crap! i know i have to let my kids grow up and let them fly the coop i just don’t want to and i definitely don’t like it. then theres the hey you wanna go out, of course i say yes but when the time comes to actually go the major no show happens. u hear one excuse after another and by the third time u give up! why is it people just can’t admit they don’t enjoy going places with you because its a royal pain in the butt to have to load and unload u and the chair. doesn’t anyone realize how much pain they inflict when they promise they will take u but don’t. for once i wish they would just say its just to much work taking u out. be honest its all i ask!!!!

so, my granddaughters birthday is coming up and i need to buy her a gift. i venture out to the local mall, big mistake!!!!!!!

in order to get anywhere i need to ride the bus, thats ok, but when i get off the bus i need to use the bathroom so proceed to go there. once there a lady was nice enough to open the door for me and then she goes into the handicap stall well i blew my stack.  its pretty sad when people pretend to be nice and then act like asses.  why do people do this?

anyways, after my tantrum i go in the stall.  another mistake!  whoever designed the bathrooms knows nothing about people, cus,  the grab bar is on the opposite side of the toilet which generally isn’t bad except for the fact that u can’t reach it from where u sit!  so i went looking for a manager and filed a complaint which i guaranteed when in one ear and out the other but it felt good to get it out!

i guess my biggest question is how long do we have to deal with ignorance?

its bad enough that all year we have to deal with the “side effects” of ms, but, during that supposeded magical time of the year the side effects seem to become amplified. a lot of people would say its depression brought on by the holidays and maybe it is , maybe its not. all i know is i really don’t like this time. i seem to notice how much more difficult it is to do the simple little things, like wrapping the gifts or just being able to sign your name on a card. and when you have the typical melt down that accompanies the frustration of not being able to do these things people around you want to have you committed. then along with everything you end up crying over every stupid little thing thats said. ya know all i want for the holidays is my life back the way it use to be. i want to go dancing, but, legs don’t work. i want to be able to write a letter without using a computer, but, hands don’t work. so the ultimate gift would be a cure for everything that ails you.

so i am a very independent person. my biggest challenge, or so i thought, was about 7 years ago when i lost my driving privileges. all because the legs decided to stop working properly, but, that didn’t stop me from doing things. i contacted the ms society and was given a electric scooter thru their loan closet. from there i learned the local bus routes and times and have been on them ever since. now 7 yrs later i go everywhere by my self and have fun while i do it. however, now i feel i am faced with a even bigger challenge. this would be my baby sister who 7 months ago was also diagnosed with ms. i need to convince her that when she goes out using a scooter or wheelchair is not giving in but actually helping her. see she has also lost her driving rights and she, like myself, hates having to rely on others for anything. she also doesn’t like to listen to advice from those who know and love her, again alot like me. i also remember what i was like when i first got dx’d, which was 20 yrs ago, i didn’t believe it and for the longest time i continued my life as if nothing has changed. of course i was 26 when i got the news so i think the younger you are the easier it is, when it comes to dealing with this life alteration. i just wish i knew how to help.

ya know everyday i come over to my computer and check out other blogs from fellow msers, and i have to say it feels so good knowing i’m not alone. i don’t know about anyone else but there are many days where i feel so alone that it actually scares me. what scares me the most is the fact that i have a very good support system and yet i still feel very alone, especially when the ms kicks into high gear. you would think that i would be happy so many people care but i don’t. someday i hope to figure it all out but until then i will continue to deal with life as it comes.

awhile ago i went to a new neurologist. as he was doing the usual exam, i asked him for something to help with the pain. his response was people with ms do not have pain! he claims pain is not associated with ms, well i don’t know what world this guy lives in but it definitely not the same as mine. so i got a much better doctor who agrees with me about the pain, so, why is it i do what the doc says, i take my meds like a good girl, exercise and sleep when needed but yet i can’t seem to get rid of the nagging daily pain. my feet hurt, my fingers hurt and basically everything seems to be hurting. i am so tired of hurting! i have noticed the more i hurt the more i end up taking it out on my family which i don’t mean to do it just seems to happen. then the guilt of taking it out on them kicks in. its a neverending vicious circle!

This is Harriets Husband Mike and I would like to post.

What the hell is up with medicade and getting authorized visits?

I called our local health provider and was put through a semantic dancing ring of how to have Harriet’s Doctor allow to be approved! The woman told me I must have the doctor send a FAX with his EIN number - thinking I didn’t know what that was she paused and pursued with “non pax” number and I said what!? She said his information if he is out of the network - I answered - “why didn’t you just say that?” her reply was you need to get informed - I nearly crawled through the phone and choked her!

This is Harriet’s Blog but you will find me here alot! - Mike

This is my first blog and I hope to gain the attention of  other people who have Multiple Sclerosis and get them to speak up and let them know they are not alone.

Thanks to my husband, my children and my grandchildren who have all been my support when I needed them and they don’t even know when they are.