A quick quip:
Never mistake my tears for weakness!
*****************
Blessings and Hope!
Category: Fear
Hell Hospital pt.2
January 29 – February 4 – Antelope Valley Hospital, Lancaster California. Second Floor East.
**********************
Plumbers?! Yes plumbers! Come on in and see the women sick, half dressed, sitting on commodes, needing help.
I guess a sink was leaking in our room against the opposite wall from me when i was in bed 4 [sink next to bed 1]. So, men [plumbers] were coming in and out of the room like it was nothing. NICE!!!!! Try sitting on a commode with strange men entering and exiting your room praying no one opens your curtain. Or going to use the bathroom whilst holding your gown closed so your backside does not show. Humiliating!!
My husband told me they were talking between themselves through the wall into another room on the other side of the wall fixing that sink as well…REALLY!
What the Hell were they thinking?? Either shut off the sinks until we are gone from the room, or move us to another room while the work is being done. I truly am at a loss with this one. Cannot get my head around it at all. WTF!!
***********************
Below are a few more pics for documentation of my bruises I came home with.
I have never been so happy to be home in all my life!!
I called their ‘Patient Relations’ today and am awaiting calls back from the director, head of nursing and a CEO!!
***to be continued***
Blessings and Hope!!
So tired…
of falling…
Does this mean I should use my Wheel-chariot all the time? No, no, no… I can still shuffle 18.2 feet. I will do that until I cannot any longer. But it hurt today. Did not hit my head, but landed hard on my back. Medication, sleep.
Short and sweet today… good night!
Blessings and Hope!
In Dreams…
She was in a daze, looking around, everyone she knew was there, parents, children, friends, in a large chair, people touching her face, fixing her hair, makeup, this is a gift to you they say. People she did not know, brushing, coloring, cutting her hair. Don’t touch my hands, I just did my nails. No, stop, do not touch my feet, they hurt. Darkness.
Her eyes open slowly, she sits up and sees the mirror. She looks into the mirror not sure how she got across the room. She is crippled, yet she is young and beautiful again. Thin. A wig? A long curly wig sits atop her head. Take it off. Her hair is red again, and long. But they were cutting it. Extensions? She shes her young body in the mirror, thin, sexy, she wants to hide.
The people come in the room. ‘Ah, you are awake now!’ She glides across the floor to them, looking down at her feet skimming atop the wooden floor. How did I get up here? Who put me in these clothes? Laughter fills the room, whispers. Come out and see all who love you.
People are everywhere. Where is my husband? In the fields. The fields? Kittens everywhere… not to worry I know who to call to save them all. Blink…
Back in the room, alone. She looks in the chipped black framed mirror and smiles. Awaken!
_____________________
Blessings and hope…
© 01/08/2010
I’ll be dreaming…
So, sometimes I wake up in the middle of the night, and have some seriously weird things going on inside my head. So, lately I have been jotting them down. [there is no real order as these are quick thoughts]
#1 “The room was suffocating, people everywhere, must get out, where is the door, the red door. She darts to the door, she flees through the red door. She turns to a blank wall, the door is gone, she is pulled into the darkness.”
© 12/24/2009
#2 “She runs through the woods, something is following her. Is something following her? She cannot stop running, running to nowhere. Is she running? She falls and everything turns to fog. Her eyes open, she sees familiar faces, she’s home.”
© 12/27/2009
#3 Smiling faces, tearful eyes, angry frowns, a wheelchair sits in the distance, she reaches for it, she cannot grasp it, she tries to stand and the floor comes up to meet her. Laughing, whispering, soft childlike giggles, all eyes on her. She cannot move, she bows her head in tears.”
© 01/05/2010
——————————–
Yes, I see the resemblance to me in each of these bits! Maybe I’ll write a horror story or something. 😛
Blessings and Hope…
Living with MS – part one
I’m going to start a series of blogs on, you guessed it, Living with MS. Each blog will have a theme to it, ie: newly diagnosed, medications, family issues, friendships, exercise and nutrition.
My mini disclaimer: All of the blogs will be from my perspective on my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.
————————————
My Journey for the truth began after the birth of my son in 1994. I was overly fatigued and started to fall quite often. It was chalked up to bad ankles [from ankle breaks when I was younger] to postpartum depression. I had been diagnosed with CFS in 1986 at the age of 22, so they added that to the list. In May 1996 my twin daughters were born and walking became quite hard. I slept downstairs with the girls in their bassinets for the first few months. Fast forward to July 1997. For months my left ankle would twist and I would have serious trouble walking. I had been to the doctor any times during this year and told the same things as before; bad ankles, postpartum depression, CFS. Finally I got mad and made yet another appointment. This time I saw a Physicians Assistant, he talked to me for a bit then asked me to walk for him. The next thing I knew he was setting me up for an MRI…a What? The next month was kind of a blur. Mri’s, evoked potentials, spinal taps. Then then the results, Mrs. Radford, you have Multiple Sclerosis. Silence!
I do not remember too much of the next months. More tests, learning how to inject a 1.5 inch needle into my thigh, crying, denial, more crying, then complete anger! At that point I had ‘the good’ MS. REALLY?! Relapsing-remitting MS. I may never progress, might be in a remission for forever even. Well, my remission never came, but my progression did.
During the next 7.5-8 years I got two second opinions at the UCLA MS Clinic by their top MS Neurologists. Damn, both said, “Mrs. Radford, you do in fact have MS.” Bummer!
From 1997, I went from ankle braces to crutch canes to walkers to manual wheel-chariots to my now power wheel-chariot. Not really where I expected to be at 45 years old.
So, in a quick nutshell, this begins my journey. I am in the battle of my life. For some, this may not be the worst battle out there, but it is my battle and it is happening to me, so it is the worst out there. Living with MS is a journey for those with MS and the people who love them. Maybe, in some small way I can help someone through a rough time or even share a few laughs. Hope to hear from you.
Blessings and Hope…
Yup, you guessed it…
Another ‘no sleep in sight night’ for me. But I wonder…is it because I cannot sleep or because I do not want to sleep? I had mentioned a while back that the night is my haven. It is dark and quiet. [the way I like it] My kids call me momma Vampyre. I am normal. No need to get up and go. No need to do anything at all. The house is ‘asleep’ and I can be whole, if only for a short time. Hubby is buzz sawing in sofa city again. The kids [off school] are quietly playing video games. And, again the big dogs are sound to sleep in here with me. Life, for me, can not get any better than this. As I read this, I realize it may sound kind of pathetic to those who do not know me. In all actuality, it is quite awesome. I can hear the occasional loud ‘snort’ from sofa city, and the kids pop in from time to time to get a hug and tell me they love me. That’s wicked cool if you ask me.
If I was well, life would be sooooo much more different. But, I wonder, would it be better? Would I be happier? The initial answer is HELL to the YES!! But, really, would it be? My husband would have a better wife, my kids a better mommy. So for them, yes, I feel it would be better. Sadly, we will never know. Would I give my right arm for my legs to work again, fatigue to stop, MS to go the fuck away…YUP!! Cut it off, no anesthetic, whatever, just give me back my legs and take the MS back!! Hmmmm, ok maybe use anesthetic. lol I mean, I’m left handed…
I have been watching a buttload of movies and get so depressed sometimes. I hate people that can walk!! Ok, not the people so much, but their ability to walk. I get very jealous. Yup, I said it, I get jealous and yes anger plays a part as well. I’m human, it happens. I’m also honest. When I used to pick up the kids from school, I would sit in the van and cry watching all the moms standing around and getting their kids. Some holding babies or their toddlers. I barely got to do that with my girls because by the time they were born the weakness got very bad. I was much too afraid to carry them for fear of falling and/or dropping them. Even with the boy, I was afraid to fall and/or drop him. By then he was 2yrs 4mos. It really sucked! What they did get, was a mommy home with them all the time. Helping with homework, reading to them, being there for them 24/7. So, sometimes I feel they got more from me than from the ‘healthy’ moms. My time was for them. If anything, hubby got the worst of it having to do all the things I could no longer do. Aw hell, it builds character! lol
I used to get mad as for years I knew something was wrong. I was dx’ed with CFS in 1986. I guess they figured a 6′ tall, thin, healthy woman, did not need an MRI or anything then. I was working and going to college. No wonder why I was tired. Then I wonder if I had know, would I have had children? Would I have married? My answer, most likely NOT! It’s now a tad late for the what ifs. So, I just keep on keeping on and wear whatever mask is needed for the day. My masks are my protection from the world. Those close to me know when my masks are on [sometimes]. Those not close to me do not need to know. It is better for them they do not see the real pain behind the mask. My way of protecting others I guess.
As 2009 comes closer to the end, I wonder…will 2010 look brighter? I guess the real question is, will I look to 2010 as brighter? Just like ‘how many licks to get to the center of a lollipop’… the world may never know! HA
Blessings and Hope …
Hey Mr. Sandman……
So, another ‘Sleepless in California’ night going on here. At least no snoring issue! Poor hubby is in sofa city tonight. Thankfully, for him, it is a nice pullout bed with a nice mattress pad thingie. He can snore until the cows come home without fear of waking up with a headache! I actually have my room and my bed all to myself too. Usually when dad is in sofa city one of the girls come on in and bunk with the mom. They worry about mommy being all alone. [not knowing mommy loves to be alone…sometimes] I’m watching “Bride Wars’, playing in FB and blogging. Does it get any better than this, I think not! I was going to watch ‘Silence of the Lambs’, but figured maybe not when I am all alone! lol That movie freaks me out.
Chance [Border Collie] is sleeping on the bed right next to me and Sadie is on her bed on the floor. Dexter is in with the girls, so all is quiet on the western front. Every now and then I hear Austin yell at his computer game. This is how I know he is here and alive. 😛
As I watch the movie [Bride Wars], I feel sad. I see such an amazing friendship and cry for one like that. I know it’s a movie, but I have heard others talk about their BFF’s and I feel detached from it. I mean, I feel very close to a select few of my friends, but wish we all were closer to create the bonds of those who have grown up together and live near one another. I am probably not making much sense here. Shoot, I do not even know what I mean. Here I go, rambling yet again.
I mentioned in a blog before that I tend to write what I’m thinking and how I am thinking it. So, many times my thoughts are out-of-order and all over the place. If you can understand me, then you might be a bit nutty like me. lol Or like the song says; ‘I’m not crazy, I’m just a little unwell’. I have all these ideas and thoughts that pop in my head, but most of the time they make no sense whatsoever. They must be medication induced or something. I know some of my dreams [when I actually sleep] are. lol I just cannot pinpoint why I am all over the place lately. Usually I can focus on things. Now, not so much.
I truly hate leaving my home. Kind of scares me as at home I am safe and in control. When I go out, I am at the mercy of others and my wheel-chariot. Others for help in reaching items on high shelves, my WC if the power dies. Others drive my van with me in it, as even though I am still able to drive, I prefer not to. I have this nagging fear in the back of my head that all of a sudden my right leg will go, like me left, and I will not be able to brake or accelerate. That has not really ever happened before, but the fear is there. And it is terrifying.
I keep having one dream that is the same. Maybe why I am having a hard time sleeping. I dream that I wake up and am completely paralyzed. Like the woman with MS that Dr. Kevorkian helped. So, ya, that might why I am having trouble sleeping. Hmmmm, think I’m on to something. I know that progression is in my future. The rate of progression is not known, and I am praying it is a slow(er) progression. Oh shit blah blah blah.
So, my train of thought has left the station. Peace out!
Blessings and Hope…
Making it Through the Rain 