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!!
That’s what I am!! lol The past few days I have felt accomplished. Each morning after the kids leave for school, I’m up and washing the dishes, tidying up, etc.. Some may say, “Big Deal, ooh you tidied up”! Well it is a big deal. Dishes take a lot out of me. Trying to reach up and over the sink to get all the plates, silverware, and glassware is tiring. It’s amazing how a dish can feel like a 20 pound weight. I have bruising on the upper back of my arms from the counter. But, to me it shows I’m moving and trying to do things. I’m slowly trying to de-clutter. It’s all about baby steps. After getting all the dishes done and things straightened, I’m ready for a nap. 😛 When I was well, my house was spit-spot. You could eat off the floors. Now, not so much. One of my OCD issues I have had to learn to deal with… slowly but surely.
I’ve been on the Ampyra for almost one month. I’d like to say I’m running marathons, but not yet. Ok, never ran them when I was well either! 😉 Do I notice anything different, better? I want to say that it seems easier to rise up from my chair to transfer, but I’m afraid if I do I’ll jinx it. I am going to get out my walker tonight when the hubby comes home and try to at least use it to get to and from the tinkletorium. Wish me luck!! I have not been able to use it since my Hell Hospital stay. That place fuckered me up. But, it would take a lot more than those fools to keep me down!!
So, it’s Monday. Here I sit wondering what to do. Hubby at work, kids at school, mommy home.
blah, blah, blah...
Sometimes the hubby will call from work and ask me what I am doing. My response, me being me, is always something a tad sarcastic. Something along the lines of, “Oh, just got back from running a marathon and I’m spent!” I will admit, sometimes it bothers me. I mean really, I can’t drive anywhere or do much, so what does he think I’m doing. 😛 I know he means well, but…
Then there’s the fact I have a great hubby and children. I know this, but when they act like martyrs, it gets to pissing me off. I know they all help me, I know I’m crippled, please do not rub it in my face. I know how much they do with working, school, coming home, shopping, etc., but don’t throw that in my face when you get a stick up your ass’. That’s when I feel crippled. I know you all work hard and sometimes it gets to be too much and you all feel like you cannot get it all done. Let me tell you, it’s the same way I feel about my job, mommy/wife. How do you think I feel that I cannot get much of anything done? Just struggling with the dishes make me exhausted. I HATE not being able to the best mom and wife ever. If I had not gotten sick I would be the best!! My heart breaks every day. When you all make comments under your breath [chicken shit] you make me feel that much more crippled.
I guess I should be glad it’s not a daily occurrence, yet! Hopefully the sticks can be surgically removed and all can get back to normal. My body may be broken, but my mind is not. I’ll only take so much! Trust me, I know I can be hard to handle. I know I have my moments too. But I do not deserve the silent treatment or the petty games.
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Ah, that felt good to get that out. It’s been burning a hole in my brain for a while now. Hmmmmm, think I’ll go run that marathon now!! 😉
Whether in a wheel-chariot or not I can still have nice shoes. Boots are my ultimate kind of footwear. I’ve had people ask why I need to buy new shoes. REALLY, Why not? Why do you buy makeup when nothing can fix your ugly? My shoes/boots/sandals stay nice, and I may be in a chair but my feet can still look good. I like to feel pretty like everyone does. I rock a wheel-chariot.
So, I’ve been keeping my eyes on some new boots for Fall. I wanted suede and wanted a square toe. Found an awesome boot by La Canadienne called the Janie boot. They are originally 259. Zappos had them for 196. I found them for 141.50. I’m the ultimate online sales shopper. I usually do not spend over 100.00 on boots, except for my UGG’s, but this was a great deal for a great boot.
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.
my legs...
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.
PISCES Your health may feel like a major concern today — so do something about it! Change your dietary or exercise habits, schedule a checkup or do some online research (using credible sources, please).
We were allowed back in our home today. Then the next group of homes were evacuated as the fire moves on down the road. Because the brush is low and we have high winds out here the fire is burning quickly. The main concern is protecting the homes in the area. We have had helicopters, various planes, and a DC10 flying overhead since yesterday dropping water and phoschek on the flames.
Status check:
Crown IC (Agua Dulce):
Fire was reported at Thursday July 29, at 2:32pm and it is now at 13,000 acres. Currently we are at 20% containment.
Resources to this fire are the following: 1700 plus Fire Personnel, 6 Copters, 4 Fixed Wing and 1 DC10, 2 Helitankers, 10 Dozers, 3 Water Tenders.
This was how it looked when we got home this morning:
The Day AfterThe Day AfterThe Day After ashes fall
I am so thankful that our family is safe, our home is safe and very glad to be back home. Blessings to all going through this ordeal.
I also want to say we have the best firemen/women in the World. They rock!! I thank you from the bottom of my heart for all you do when risking your lives to protect ours. Ya’ll ROCK!!
Blessings and Hope!
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UPDATES:
Evacuation Information
Friday July 30th, 2010: 5:18 a.m. PDT
Palmdale Station is advising the following fire evacuations:
Leona Valley / West Palmdale
The Ana Verde Community
South of Elizabeth Lake Rd from 90th Street West to 25th Street West.
Evacuation Shelters have been setup at the following locations:
Marie Kerr Park – 2730 West Rancho Vista Blvd, Palmdale
Acton Community Center at 3748 West Nichols Ave, Acton
Agua Dulce Elementary School at 11311 West Frescati St
Residents needing shelter for large animals are asked to go to the Antelope Valley Fair Grounds at 2551 W Avenue H, Lancaster
Road Closures
Friday July 30th, 2010: 12:08 p.m. PDT
Based on ongoing evaluation of the fire and dangerous conditions, Incident Command is ordering a hard road closure in the area of Elizabeth Lake Road from 25th Street West to Bouquet Canyon Rd. Access to Elizabeth Lake Road via Goddie Hill and Bouquet Canyon Rd is also closed.
Access into the area will be restricted to all, including residents. Those residents who have chosen to stay are encouraged to leave.
Access is limited to residents only in the following areas:
Anaverde Community, Rancho Vista, and Shannon Valley.
Come and spend some time with Ruby and Tracy in The Padded Room.
We’ll be updating our “Hottie of the Week”. Tune in to find out who it is.
A Life without hope is like living behind the locked doors of a padded room. Ruby and Tracy want to help you find the hope needed to unlock those doors. Two crazy ladies, passionate about being real in the midst of their own real-life health and emotional challenges, are here to encourage you in yours.
Took my Ampyra at my 7pm time. I actually went to sleep at 10pm which is early for me. At 12:30 am I’m up. Hubby is snoring as he did not put the Snore EX mouthpiece in. I can hear the girls in the front room watching tv and camping out. I’m becoming quite irritated at all sounds I am hearing. I keep rolling hubby over and asking him to put the mouthpiece in. I get a sleepy ‘ok’… and he rolls back over and snores. After about an hour of this I get a bit more ‘aggressive’. Put the fucking mouthpiece in or I am going to smack ya over the head. SUCCESS!! He finally gets it and all is quiet. I’m lying there, completely exhausted, but unable to find sleep.
2 am… pain in my calves. I am used to pain in my legs but nothing like this. It felt as if someone had my calves in a vice tightening it more and more.
Insert calf and tighten
It’s now 2:30 am and I’m deciding if I should pop a Norco or not. The problem with Norco is it kills my stomach if I do not sit up after taking it for at least a half an hour. So that’s out. I do not know when sleep finally came, but the next thing I know my cell alarm is going off at 7 am. Ampyra time! I then read about the side effects for the nth time:
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seizure (convulsions);
pain or burning when you urinate;
problems with balance; typical for me
numbness, burning pain, or tingly feeling; GREAT
relapse or worsening of MS symptoms;
Less serious Ampyra side effects may include:
headache, dizziness; have this
sleep problems (insomnia); DOH
nausea, constipation, upset stomach; umm hmm
weakness; uh MS doh
back pain; Degenerative disc disorder
stuffy nose, sinus pain, sore throat; coughing at night
mild skin itching. GREAT
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When I read this I have to laugh. MS already does most of this all by itself. So whose to know if it’s MS or the Ampyra. I know the leg pain is the Ampyra as I have never hurt so bad in my calves before. My dizziness has worsened, and my throat is bugging me more than normal. Above, in red, are what is happening. With most medications, side effects do lessen with time. *knock wood* So, I will remain on it for a few weeks hoping I can get used to it all and that it will lessen with time.
Some clarification here. I am in agreement that it is a quirky and kind of pathetic blog and request. Here is my reasoning for it. Read or not, it’s up to you.
My hubby would let me put us in to debt to get this done, as he knows the struggles I go through daily regarding my MS and my feelings of low self-esteem regarding my body. My c-section with my twins lost me some lower tummy muscles and is something I would not trade for the world. lol I am 6′ tall when walking, but now I am 4′ feet or so as I need a wheel-chariot. At one time I was 6′ and weighed 153. I looked good. 😛 Now thanks to my MS and my medications and weight gain due to these issues, me self esteem is low. I can not bring myself to look in the mirror anymore as I do not like what I see. This is my issue and no one elses.
I’ve had people say to just deal with it, I look fine, etc. But to me, I do not. The MS took so much from me, and I want something of the old me back. My body will never be the way it was, I’m not stoopid! lol But, it can be what I feel good about. I will continue to eat right, do what small exercises I can and move forward. My neuro stated the only way to get rid of my ‘issues’ most likely would be surgery in the future. He meant it in a good way. 🙂 It’s hard for me to sit up most times, so tummy exercise are few and far between.
So, there it is. My dream, is maybe just maybe, someone will see this and offer their services. But, I will not hold my breath!! [quacks need not apply]
BREATH!!
The ideal doctor would be Dr. 90210, Robert Rey. Wow, he does some awesome work.
So, there it is. Why the blog, why the donation button. I just can not see me spending that kind of money on me. Thanks to amazing people I’m getting the bathroom of my dreams, and more needs to be done for handicap access to my home. So that’s where we need to focus our funds, there and our 3 teenagers! lol
My motto when things seem far fetched and off base…’It could happen!’
Making it Through the Rain 