Do you ever have those days when you know you have something to do or need to do something but just can’t find the oomph? I’m there. The past few days had been not the best MS days and kind of overly fatigued. I know it will pass, but I want it to pass like yesterday.
My bff aka sister form another mister contacted me to let me know her mama [who I think of as a mom] is not doing well and her Cancer has returned with a vengeance. I’m so numb and cannot imagine what my bff is going through. Mama Jo is one one the finest ladies I have ever known. My mom lived far away and she was like my surrogate mom. She took me in as one of her own. I want to be able to be there for my girl and mama Jo, but this damn MS keeps me immobile. I should be in the car driving out there to be with Liz and flying back with her if needed. I can’t and I feel helpless. No matter what went on in her life she always had a smile for others and a kind word. Please keep them all in your thoughts, prayers, blessings, whatever it is you do. If there ever needed to be a miracle, it should be for her.
it could happen!!
I just hope they can control her pain so she doesn’t suffer at all. She is one the strongest women you will ever meet, a fighter. I love you mama Jo!!
So, ya, it’s been one of those days. Can’t seem to function. Please keep Liz, Will, and Ted in your thoughts, prayers and/or blessings as well. Her children love her so!
The Crown Fire has made us leave our home. We were evacuated around 8:45pm.
during the afternooneveningleaving home
I so get why people do not want to leave their homes and want to stay and fight. I always called those people morons, now I am one of them. The feelings of ‘will my home be here when we return’ is devastating. We packed up our 3 dogs plus our neighbors dog, our cat, Stewie the bearded dragon, and the 5 of us. We headed over to Courtney’s house. Now there are 10 humans, 10 dogs, 3 cats and one bearded dragon. Talk about a ‘full house’! We have no idea when we can go back to our home. I feel sick to my stomach. The fear is overwhelming. I’m trying to keep positive thoughts and hoping that our home will be ok when we are allowed to return.
yellow evacuation areas
I’m not sure what to say… I’m scared, lost, and worried. At least my family is safe!!!
For those not wanting a ‘pissy’ read, then move the fuck on. Sometimes life sucks REALLY bad. I listen to all your, waahhhh gotta tummy ache, waahhhh gotta cold, so you can listen to my fuckin’ waaaaahhhhhh I have Primary Progressive MS. Your tummy ache and cold will go away, my MS is only getting worse.
Part of my today is depression. Mama Jean has been gone for 2 years today. She was my Alanon sponsor and she saved me many times. I miss her so much my heart hurts. I cannot seem to get a grip today. I add my lil sarcastic quips, music videos, etc to cover my pain. Acting like life is O.K!! But it’s not.
My favorite wind chime broke today. So, having good tools and figuring an easy fix I took it apart and readied it for some Tracy fixin’. It went ok in the beginning, then my hands just stopped working right. I kept dropping it and that just got me depressed even more. WHY!! Fine, I have MS, but why the fuck does it have to keep getting worse. WHY the fuck me? And DO NOT say, ‘why not you’. All you’ll get back is well then why not you ASS?!
Most people can just get up and go, do things, parties, see friends, etc. I can’t, not anymore. Long drives, not easy. I have to make sure wherever I am going is REALLY crippled accessible. Just ’cause it says ACCESSIBLE, does not mean it is. Sitting in the same position for too long causes the shakes and pain. My legs swell and hurt. And for us, it’s me that needs to stop every hour to pee. Let’s just say ‘rite aid’ brand pull-ups rock. Oh ya that’s fun, being incontinent. Nothing better!!
Fuuuuuck!!!
Funny, not even sure where I am going with this blog. The need to vent here instead of at my family maybe.
I do not even understand why the fuck I am here. Life is about quality, and I have none. I am taking up air someone else could use. Please do not give me the ‘there is a reason for everything’ crap either. There is no reason for this. If there was then the criminals in prisons should be the ones dealing with chronic illness’. And no ‘religious’ comments either please. Faith left me a long time ago. I have my own personal relationship with my God. Right now we aren’t speaking. Well, I speak, but me thinks I’m on terminal call waiting.
I’m tired here. I can barely get from my bed to my chariot anymore. Takes me 5 minutes just to get up [sit up] in the morning if there is no one home to help me. So now we are going to figure out some sort of contraption that will hang from the ceiling that I can use to pull myself up with. Hopefully I have the strength TO pull myself up.
Shit, have no clue where I am going with this. Just needed to purge…
This blog is my blog. It is for me to share my life with my friends and my family and anyone who has an interest. It is to tell the stories of a crazy lady living with MS…moi!
When all the crap happened to me at the hospital I used it, MY blog, to reach out to my readers for support through a time that encompassed my world in a not so good way. I never wanted nor asked for your sympathy or pity. That’s not what I want. I needed…NEEDED support and friendship. That is why I shared my experience with you all.
This past year I have progressed more than any year previous, but still found the humor and tried to always add something in my blogs for a giggle. Even in my Hell Hospital blogs I tried to add humor.
During my stay in the big house, I was informed that I have acquired 3 new active lesions on my spine. With all the hospital terror and the issues of late, I put that aside and put it to the back of my mind. I am terrified of what these lesions could mean. No one can really give me a definitive answer. Is this the reason I can no longer use my walker and rely on my wheel-chariot now more than ever? Am I on my way to total paralysis? Again, no one knows. But either way I will deal with it as it comes. My inner spirit is strong.
There may be days I will be down, happens when you have a chronic illness that takes from you every day. But, as I have said before, NEVER confuse my tears or sadness for weakness as you will be wrong. I am strong in mind, heart, and soul. I do make it through the rain EVERY day of my life. I do this with the help of my family and my friends that accept me for who I am and not what they want me to be.
I was told I look for sympathy and feel sorry for me cards [whatever the fuck that meant]. In this case this was one of the ‘the pot totally calling the kettle black’ things. Sympathy and the feel sorry me BS is something I have no time for.
This is a blog about a woman who lives with Primary Progressive Multiple Sclerosis. Of course there will be blogs that might be a tad depressing. DUH!!! But, you will always find HOPE in my writings. I end every blog with ‘Blessings and Hope’! Why, because there always is Hope!!
I am only me, and will no longer apologize for that! No one should ever apologize for being who they are.
So, here it is, take me as I am and I will do the same for you. If you feel I have wronged you, talk to me, come to me and I will show you the same courtesy. I am not a liar as I have no reason to lie. I am not a manipulative person, but have found that many have tried to manipulate me. Do not do it again!!
I will now be back to my former sarcastic, a bit crazy, mentoring blogging in hopes that maybe I can help someone in a similar situation. Maybe we can help each other. And btw, I do still make some wicked tasty lemonade from the lemons life has given me.
Thank you for being here and reading me. As new details arise regarding the hell hospital situation, I will update. [if you do not want to read em, then move the fuck on] 🙂
I feel like this is where I am living right now. Trapped inside the padded room with no escape. But, eventually I will escape it. I can do this by letting trusted friends and family in my heart and searching my own inner strength. I am finding myself through the help of an amazing internet ‘family’ at the Real Life Radio Network!
YOUR INSPIRATION STATION. Where Possibilities Become Reality.
My girl Ruby and I will soon be hosting a radio show at Blog Talk Radio RLRN, called The Padded Room Unlocked: Living Victoriously with Chronic Illness.
The network was created by the Fabulous Laurie Zieber . And the Mentor Hosts are the best Around!!
Please find the time to stop in and check out this phenomenal site created by a phenomenal woman!!
Feeling a bit overwhelemed, so going to take a break for today away from the ‘hospital’ blogs. I need to sort my thoughts for the blogs to come, so today I will be resting. Sleeping and watching movies are what is needed for me right now. The hospital conclusion[s] will be done within in the next week, so stay tuned if interested. These blogs are to help me face it, deal with it, and find my way back to me.
Thanks for all of the support thus far. I am blessed with amazing friends and family!!! xoxo
The hubby is ‘softly’ snoring, kids talking as quiet as kids can, and I cannot sleep. So I am here to ramble…
Do you ever feel like something is missing, or you forgot to do something important? I HATE that feeling! I am not one to forget things, and yet lately I forget everything. My MS is messing with my cognitive skills, and that pisses me off more than losing the use of my legs. Shit, even more than incontinence issues. I actually forgot to pay two bills in the past months. That is so not me. Thankfully we are never late and I got out of late fess. Get this, I even have reminders…and i still forgot. It’s the damn ‘some-timers’; sometimes I remember, sometimes I don’t! 😛 So, if anyone out there knows what I am forgetting to do, please let me know. rofl
This blog may be out of sorts, as I have no clue about anything. My girl Ruby made it through her 11 hour back surgery with flying colors, so no more worries there. Christmas is over and it was good, but YAY it’s over, so all good there. A woman needing help, got help thanks to Laurie and her call to arms at Facebook. So that is really good.
I am feeling sad about my good friend Lu’s father, passing away. I so wish there was something I could do to help her through this time. Lu. if you are reading, know you are in my thoughts and blessings and if you need me, I’m here! I cannot imagine her pain. That is the problem with having friends so far away, I cannot get over to her home and give her a hug. Love ya Lu!
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I have so many thoughts going on in my lil head and cannot sort them out. ARRGGHH I get so frustrated when this happens. There is no sleep in sight and deciphering my crazy thoughts. I start thinking about new designs for a bracelet, then POOF my mind goes to how can I get out and start doing some photography, then POOF thinking about a blog I want to write on finding my center. I try to concentrate on one, but then something catches my eye and I’m off to another dimension of space and time! lol
I have lil chicken scratches of things I think of and want to accomplish someday. I want a concert ukulele, but then I would like to try a zither or harp. I have heard the vibrations of musical instruments on the body help to center some, find a sense of peace, if you will. I re-tried to play guitar, but my hands were not strong enough to hold down the strings. We have a piano, which I mess around with, but it’s a lil big to have in my bed on bad days! So, I am looking for something small enough to keep with me. I need music in my life…
I figured by now I would be getting tired…NOPE. Just more goofy. Maybe it’s my meds. Ya that’s it, it’s my meds.
Hubby is no longer ‘softly’ snoring. Now he is buzz sawing it. It’s like razor blades being slid through my brain.
me...
I just ordered a snoring mouthpiece thingy for him. I so hope it works or he will be back in sofa city soon. I see visions of me, a wrought iron skillet in hand, and his head. I am thinking ear plugs before that vision becomes reality!! I can still hear him even when he is in sofa city, even when I have my ipod on. The house shakes. I’m thinking it’s it the big one [cali, earthquakes], but no it’s just him…snoring! I have some earplugs from when I had my last MRI. They kind of rock. Better than the ones in the store. But they suck to sleep in. So, pray for the hubby that the mouthpiece works, or no more cal king bed for him!! mwaaaahhhhhhhh
OMG, so hubby is snoring. Not too loud now as the plugs are in, but now one of the 3 dogs just popped a HUGE bean and it stinks!! Holy man…where is the spray? rofl This is so life in my world. I love it! Loud and smelly and I would not change a thing. [maybe get some nose plugs too]
I need Mr. Sandman please. Hope he’s cute, maybe Gerard Butler cute. Maybe not, as no sleep would happen if he was my sandman!! YUMMY man!
Ok, so now going to go surf the net a bit more, maybe play a game or two and hope for sleep. For those who made it through my ramblings, bless you. You are brave! Now I bid you good-night!
My dad and Cheryl came on December 19th for our Christmas with them. They brought along Riley, Cheryl’s new baby. He is a lil fluff ball Shih-Tzu. Dexter was so excited to have Riley come to visit. It was adorable to watch them play. Dexter got a bit irritated after a while as Riley was invading his ‘personal’ space!! [if you get my meaning]
Riley
Dexter
Please get off of me!
Let’s Dance
I’m taking you down!!
Are you gonna stop humping me dog!
The takedown!! 1-2-3 OUT!
So, as you can see, Dexter finally took control. It was the best laugh I have had in a loooong time!! And they both slept very well that night! lol
Now, on to the day. We all went to ‘Olive Garden’ for lunch, and it was amazing! I’m not supposed to do bread, but hey, it’s a special occasion…Right?!! I also had a Cosmo, so yummy. Don’t be hatin’! lol We all ate waaay too much and had a big ‘people’ bag to bring home. I did some flip video of the lunch and as soon as I edit will add it. 🙂
Now the best part…I got a pair of chestnut UGG Classics!! My favorite boots of all time!! They keep your feet warm in winter, and cool in summer. Which is awesome for someone who hates to wear socks! No socks needed with UGGs!! All in all it was a very ‘good’ day in the life of me!! I have awesome parental units. I also must note, I have the BEST step-parental unit as well. I am very blessed with my whole family!!
More over, why do people feel the need to ruin other peoples friendships? Someone who was gone for a while then pops back in and trouble seems to start. During the time they were gone, there was no drama. Now all of a sudden DRAMA is back.
I tend to know why, because they want certain people as their friends and no one else’s. Well, sadly it worked. They manipulated someone close to me enough so that somehow they got the person to believe their BS. They look for those who are in a confused place and strike. I actually feel bad for them as well, must be a sad place they are in and a sad way to live.
What sucks, is the person who now has blocked me from her life was someone I adored. Someone I felt was a part of my family. I think it hurts the most because she did not call me and talk to me, just deleted me out of her life after almost 11 years of friendship for someone who just popped back in. I have had friends come and go. But, this one hurts.
She knows who she is, and she knows I will always be here for her. I truly hope she reads this, I truly hope she looks inside herself and realizes the truth. You can call me anytime, I am here.
I am sorry I allowed the toxic one back in my life. I really thought she might have grown up. I was wrong.
We see ourselves with these illness’. We try to come to terms with it/them. Eventually we learn to live with it. But what about our children? How do they learn to live with it, or even understand it? Should they ‘get it’ by a certain age? Should they learn to deal with it?
Yesterday was one of those dayz I was reminded, yet again, about my dis-ease! Ashley had a spaghetti dinner to go to for band. Roger had forgotten something at work and headed back home. I told him just stay home. What a waste to drive back (60 miles) again. He said ok he would. So, I told Ashley that dad was staying home. She got very excited and said that way he could drive her to the dinner. [I prefer not driving and do not drive at night anymore] When dad got home he said he had to go back as they were really busy right now. I was a bit irritated as I had told Ash he would drive her.
Well, when she got home and I told her what happened, she lost it. It was all my fault, now how could she go, she told them she was going to be there, why can’t I be like other moms, good moms drive and take their kids places, it’s my fault she never gets to go anywhere cause i’m an ms freak, etc, etc, etc. These are things I already feel about me daily. They have lost out on so many things thanks to my MS. But, it is not my fault!! I told her to call and maybe a friend’s mom could take her with them. She said NO, that is so embarrassing, no one needs to know about me being sick. blah blah blah. The girl that was going to take her was doing something else, and now thanks to me, she would miss this.
I sat there for a while, listening to her, quietly crying. I cannot imagine having a mom sick. I remember being embarrassed by my parents at times in my teenage years. It happens. I cannot imagine how hard it is having a mom in a wheelchair. So, I let them vent, let them yell, etc. They have all had their ‘moments’ of frustration towards me. I let them get it out. Does it hurt to very core of my being? YES! But, I cannot stress over it too much or I will get myself sick, literally. So, again, I let them vent.
My anger, is towards the disease that has taken me from my family piece by piece. Now, she did get punished for this once she got it all out. Even though I understand their own frustrations, there is never a time for blatant disrespect! I think as someone with a chronic illness we have to ALWAYS remember, it affects all around us as well. That’s not to say my heart does not break, but so does theirs.
So, how do we cope and help those around us to cope? After 12+ years I should be a pro at this, but not so much!!
Making it Through the Rain 