Fuuuuuuuuck

February 8, 2011 Tracy16 Comments

I know, great title for my blog. Haven’t blogged in a bit and here it is, in your face…fuuuuuuuuuck!!

You may ask yourself, ‘Why?’ I’ll tell you why. It’s now after 11pm and I wanted to go to sleep. You know, lie down, get comfy, sleep. NOT! After 4 minutes of trying to lie down I gave up. I cannot seem to get my legs up on the bed. I get one up the other slides off. I pull on my jammie pants leg and my hand cannot hold on or lift my leg. Now I could scream for someone to help me, but they are all asleep and have to get up early for work and school. Hubby is on the pullout sofa as he snores so bad he wakes me up all night. So, I’m sitting here with tears rolling gently down my face as sleep is not coming yet. Even if I get my legs into the bed it take me forever to get into a position comfortable for sleep. Once I lie down I have to pull each leg up in a bent position or my lower back hurts. As it is, if I do not sit in the right spot before I try all of this, I may end up too high or too low on the bed. I am not able to ‘scooch’ into a comfy position. I get one shot. I guess I’m lucky, as once I do finally get comfortable I’m ready for sleep, as doing this easy task takes all of my spoons. Just getting into bed is a fucking chore and it pisses me off. It’s not fucking fair!!!!!! And don’t tell me it could be worse!! It’s going to get worse so shut your mouth. And don’t tell me it could be worse, it could be cancer… this IS my Cancer!!! It has and will continue to take my life from me. Just in a slower mode.

February 8th, marks the 2007 death of my MS partner in crime, Tina Richardson. Her progressive MS killed her. She got caught between a heavy power chair and bathtub and slowly suffocated to death, alone and I’m sure frightened. She could not move and could not scream. So, do not tell me no one dies from MS. They do every fucking day. If she had not had MS she would not have been in that position. I know others that have passed away due to pneumonia from being immobile and the MS basically killed their lungs. Tina was only 40 years old and my friend and I miss her every day. So fuck you and your,’it could be worse!’

As of this moment, it’s only going to get worse for me and I’m petrified. I am in a wheelchair 24/7. I am tired, fatigued 24/7. I run on fumes every day and try to be funny and crack jokes. I hide behind a smile and most days I wish it would all just end. I have pain 24/7, incontinent at 46 years young. Migraines, weight gain, unable to do the simplest tasks. The next time you feel the need to bitch about running errands, doing the dishes… be glad you can run errands and have the strength to do the dishes. I would trade you in a hot second to be able to do all those annoying tiresome chores. The next time you take a shower, thank your God you can. Even taking a shower is a chore for me and after I usually need to sleep as there goes some more spoons.

I try to keep the pain to myself, me feelings, my MS. This is my blog, and you can read or not. Tonight, all the lil things going on in my life, and then the tip of the iceberg, not being able to just get into bed, hit me all at once and hard. Seven months, still no bathroom finished, haven’t even seen them in over 2 months. Promises to here then no show, no call. Losing more leg movement and the list goes on… depression has hit and it has hit me hard. Will I make it through this one… Hell yes! I always do. I’ll find my inner strength and pull my boot straps back up and move on. But, now and then I need to let go, and let the idiots know to watch what they say. God help them if they ever had to deal with a real illness… my comment to them will be, “Hey asshole, it could be worse, you could have MS!!!”

Happiness · Health · Love · Multiple Sclerosis · Ramblings · Sarcasm

Bringing in 2011

December 31, 2010December 31, 2010 Tracy8 Comments

I haven’t blogged much as of late… not much to say.

This past year has been one of those roller-coaster rides you just want to get off. A not-so-fabulous hellish hospital stay, a few bad MS months, the waiting for the shower to be done, and just normal FML things.

But…

There is also the roller-coaster rides you never want to end. The love and support shown during and after my hellish hospital stay and during the bad MS months. Thanks to a couple of Angels, we are debt free and finally getting caught up. [so hoping the other shoe does not drop] I know, pessimism at its finest. I’m trying, lol

This year has also brought true friendships to light and I am so blessed with them. And yes, you know who you are.

I have no resolutions as I never keep them. I just hope for my MS to slow down before it puts me in a home. But, if the home is in an asylum, I might find it kind of cool. Free meds… need I say more. Wonder if they have wireless access…

So, I really don’t have much to say yet again.

I just wanted to wish all my family, friends, and anyone who needs a wish, A very happy and wonderful 2011. May all your dreams come true.

One lil thing too, remember to be a bit kinder and caring to those who may be struggling in their life. We never know what smiles may be hiding…

Health · Multiple Sclerosis · Ramblings · RANDOM

Ampyra and other mindless thoughts

November 22, 2010November 22, 2010 Tracy12 Comments

After being off the Ampyra for 2 weeks thanks to the prescription insurance buffoons, I finally got back on. The weird thing is I felt better being off of it than being back on it. I actually had more leg strength when off it then i do now. hmmmmm Makes me think may not be the right medication for MY PPMS! If I do not notice any real differences in the next couple of months, I’m done!!

Now the prescription ins people, CVS Caremark, are denying me a medication they approved for me for the past two years. WTF, Really!! So now i get the fun task of calling them and letting them have it! Greedy bastards!!

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I added some new things to my sale items sections, and all kinds of new glass pendant necklaces, my newest love, to the shop. I am finding that when I am at my design table and making new pieces, it helps keep away those depression gremlins.

Keep an eye out for more ‘fun’ discount codes as December arrives. You’ll be able to save up to 20%.

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If I’m not back by Thursday, Happy Thanksgiving, to all who celebrate.

Multiple Sclerosis · Ramblings · RANDOM · Silly

This-n-That and Ampyra

October 24, 2010October 24, 2010 Tracy8 Comments

Will start with the Ampyra saga. I’ve been on it now for 3 months. Do I notice any improvement? I want to say, “YES YES I do”, but it’s not that simple. I do feel that transferring and rising up and down has seemed easier, sometimes. But, then I wonder, was it the same before the Ampyra? I’m sorry but most [99%] of the MS medications are for RRMS and not the progressive forms. They say this is for all types, but I do not buy it. You would think they would WANT to find something for the more serious forms as then the less serious form might be ‘cured’.

Well, it’s kind of a mute point now anyways as a clusterfuck occurred between the insurance and the neuro’s nurse and the neuro. Due to the type of drug this is they [ins] wanted to know the progress after 3 months before refilling my scrip. You would think that would be easy peasy… ummmm nope!! My neuro’s nurse [new] is one not the brightest stars in the sky when it comes to dealing with this. I think she mis-informed my doctor and he canceled the scrip.

She told me to call back Friday night after she spoke with my doctor. Fuck that… she can wait until Monday and this time she better have the right answers. I’m still waiting for a referral from 2 weeks ago she has not done. I’m a pretty patient person [hence my bathroom] but DO NOT push me too far. You will not like it. So we shall see what happens tomorrow.

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I am finally back to doing my jewelry, MzTracyr Designs . I hope the good feelings last as they can go away as quickly as they come. It was really cool being at my design table creating again. It’s been like 3 or 4 months [maybe longer] since I have made anything. Drop on in and take a look if you can.

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Now on to a funny/not funny situation. My wheel-chariot does not seem to want to hold a charge. So, Roger took it apart and tested the batteries the cables and all are fine. I’m wondering if the controller’s wire is messed up since I do run into walls from time to time. lol I’ll be calling them tomorrow. Oh JOY! Now the funny, omg, duh moment… I’m 6′ tall and wheel-chariots are not made for tall people. This one seemed the best so we got it. Well, when Roger took it apart we found that we can raise the seat almost 6 inches! We were busting up laughing and how stoopid we are. I have had the chair since February 2009 and we had no clue. We are not big ‘manual’ readers. lol It is so cool to be higher. I was in heaven today. He raised it so the back is a tad lower than the front and it is amazing. So, now I got the best chair, and it may be having issues. This is so my life!!

Welcome to my world!!

Multiple Sclerosis · Ramblings · RANDOM · Stupid Stuff

Migraines

October 21, 2010October 21, 2010 Tracy1 Comment

Fuuuuuuuuuuuuck!! Nuff Said!

Multiple Sclerosis · RANDOM

Photography

October 18, 2010October 24, 2010 Tracy12 Comments

One of the things I would love to do more of is photography. The problem is my damn wheel-chariot. It makes it hard to shoot what I find intriguing. Abandoned buildings, homes, hospitals, cemeteries. Places with history. Roger bought me an awesome Canon EOS with all the gadgets and gizmos along with a big ole zoom lens. It is something that makes me smile. We also have a couple of amazing 35mm film cameras.

I am a huge fan of a FaceBook site: Another State Of Mind Urban Exploration . They also have a shop here: Another State Of Mind . Their photography and their eye is extraordinary. I urge you to like their FaceBook page as well as check out their shop. As most of my friends know I have a love for the unusual, paranormal, etc. The Asylums and abandoned buildings they find and shoot are first rate. I joke that I am living vicariously through their lens. Which, in all actuality, is no joke.

There are some amazing places in California I am finding with histories and even hauntings. I am hoping to one day be able to go to some of them and shoot some photos. Praying for some sort of crippled access. lol

Depression is a huge part of my Multiple Sclerosis, seeing the photos from Another State of Mind makes me smile, and imagining the stories behind the photos is so intriguing. I would love to show you some examples of their work, but copyright is very important to me. So I implore you to go check out their sites. You will be glad you did.

Multiple Sclerosis · RANDOM

Sleep…Imagine that!

October 12, 2010October 12, 2010 Tracy4 Comments

Sleep would be awesome right about now, except for the fact there are razors blades cutting through my brain… his name is Roger. The Snore-EX worked great for some time now, think he needs to redo it, re-mold it to his mouth. His snoring is making me want to smack him over his big ole noggin with my baseball bat. I try to deal as I can rest during the day, but I need good sleep as well. It is a must when dealing with MS. I always laughed at people who sleep in separate areas, now… not laughing. He needs to get the mouthpiece working or it’s sofa city for him. I’d love to be able to go out and sleep on the couch, but once down I cannot get up by myself. Once he’s asleep there is no getting him to get his ass up and get the hell to the couch. So here I sit… irritated, anxious, pissed, and fucking tired. I have taken my meds to hopefully help me to pass out from sheer exhaustion so I can not hear him anymore. Oh dear meds, please give me relief.

It is just not my month… Depression has set in, I want my bathroom done already, I feel sick, useless, alone and just plain pissy!!

There is so much I need to get out but have no energy to do so. I blog in my head every night then by morning it’s just gone. I just want to be happy for once, that’s all…

Multiple Sclerosis · Ramblings · RANDOM

Blah…

August 25, 2010 Tracy6 Comments

That’s how I feel. Not so much in a bad way, just in a blah way! 😛 All kinds of things I wan to get done, now really energy or oomph to do them. Little baby steps I guess. I’m up early with the kids while they get ready for school. Once they leave I get the dishes done, then tidy up a bit. Trying to get a little routine going again. Once I get that done, boredom sets in. Not feeling the internet much as of late and have seen all the movies on demand and all my DVD’s. Then the tireds set in and it’s off to sleep I go.

I read on a friends FB status how she was off to lie down and have a DVD day. This friend has Lupus. Someone wrote how it must be nice to be able to just lie around and do that all day. I kept out of it as my first instinct was to tell this person to STFU!!!! What we would give to not have to sleep our days away. To be able to get the fuck out of our house, have a job, do chores, etc.. I knew to move on as I did not want to rip this idiot a new asshole. Ya, we loooove not being able to do things. To sleep all day. What a fucking quality of life!!

OK! Done bitching and I feel better….

Health · Multiple Sclerosis

Another day…

August 12, 2010 Tracy12 Comments

The waiting for ‘the better day’ is taking too long. This lingering headache is sofa king annoying and cause me so much stress. The pain in my arms and legs is beginning to really bother me too. I learned last night that my Norco for pain is no longer for me. It helps with the pain in my body, but then cause me chest pains. [esophagus issues] Normally I can take them with no problems as long as I sit up for 30 minutes or so. Now, not so much. Was on the phone with my Ruby girl and had to get off quickly as I thought I was going to be sick. I shut my Mac and put my head down for a bit and the yuck feeling finally went away. Is it too much to ask for just one day of feeling good?

Now, too change the depressing subject… my bathroom is coming along. They finished floating the floor into a ramp for me. I did get a nice laugh this morning as my lil boy Dexter left tiny puppy paw prints in the concrete. 😛 I hope it does not hurt the tile laying! OOPS! lol

As for me, today, it’s going to be a movie day. Need to re-generate. As I type that, I laugh. All I do is movie days and lie down and rest. Such is life right?

Health · HELL · Multiple Sclerosis · Ramblings · RANDOM

Life…

August 11, 2010August 12, 2010 Tracy28 Comments

This is NOT my life… where is my real life? If you find it, please reply here with the location.

I realized that I have not been out of my home for over 3 weeks. I just have no desire, no oomph to do anything. I know it’s not about the Ampyra as I’ve only been on that 2.5 weeks. It’s been so hot here and heat is no longer my friend. When I say out of my home, I mean that literally. I look outside, but have not even gone outside. I have no desire, or care much right now to do anything.

All my kids are back in school, hubby working, so I’m alone all day. I do not drive, can’t work, and sometimes I really feel like what’s the point. I have no energy, my fatigue is off the charts. [even with the anti-fatigue meds]

And please, please do NOT say, “It could be worse.” or “You’re only given what you can handle!” BULLSHIT! This is my ‘worse’. I need help to get dressed, to shower, sometimes to eat when I can barely hold the utensils. I wear my pj’s most days all day as by the time I get up everyone is gone, and it takes too much energy to get pants on by myself. Luckily, I love my pj’s and have many sets. I guess unless you ‘roll a mile in my chair’ you’ll never understand. The helplessness, the loneliness, the depression that sets in. Maybe it’s a ‘healthy’ thing. Usually it’s the healthy ones that makes the above statements. Their biggest issue is what to wear, having a busy day, what to cook for dinner, ‘oh damn’ have to drive the kids around, etc. etc. etc!! PLEASE!! I know this to be true as I was once there and took soooo much for granted. Like ….. walking for instance.

I’m tired of always feeling like I have to be shiny happy all the time. My life SUCKS!!! I know, I know, I have a gr8 husband and kids and family and friends…I get that. But, I have no purpose. Without a purpose what’s left. Feeling useless is the most depressing feeling of all. I have not felt like nor have had the energy to make anything for my shop in weeks. My hands cannot hold the tools very well right now. SHIT, SHIT, SHIT!! Who really cares anyways.

Blessings and Hope! [still waiting]