Archive for the ‘healthcare’ Category

I don’t wanna die, I just don’t wanna be sick anymore!

Posted: August 26, 2011 in Depression, healthcare, hope, medical, medications, multiple sclerosis, Pain, Ramblings
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As I started my new treatment this issue came in to play. On August 23, 2011 I had my first infusion of Tysabri.

My very own Tysabri bag

My very own arm!

One major side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. This medication suppresses my over active immune system due to my progressive MS, which can lead to this viral infection. I will be monitored for medicinal hepatitis [liver damage] and UTI’s. Now that my system will be suppressed I am more prone to getting other issues.

When getting ready for my appointment we [hubby and I] discussed the possibility of PML. When Roger looked at me and said that this way I can get my wish, to die, I sat open mouthed. I have stated, when in depression, that death is freedom and sometimes I do not want to wake up in the morning, I guess he took it literally. With tears welling up in my eyes I explained that I do NOT WANT to die, I just want the pain to go away. I want to walk again, to be able to hold my bladder, to be able to go out in to the sun, to be able to drive, to not have mental and physical pain… I want to play with my kids!! I will be honest… there are days I do not want to be here anymore. Unless you suffer from a serious chronic illness it is hard to grasp. But, in all actuality, I do not want to die. I just want my life back, a quality of life back.

I’m not even asking for much from this medication. I just want to be able to drive again and hold that bitch of a bladder! :-P I’m not expecting much, as when I do my hopes are always dashed, so I am just waiting. It’s all I can do. I’ll keep fighting until my strength is gone. I need to be here to annoy my kids for a long time to come. It’s what I live for! lol

I will now go once a month for the two hour infusion. They [who the hell are they] say it can take 6 months to a year to see a difference. I’ve waited this long, so what’s another year or so. My problem is when I want something, I want it now. MS has certainly taught me patience… for the most part! [I try, really I do]

A new adventure is happening, and as always, I will go in head first! Wish me luck!

Love and Light!

Money, Money, Money…

Posted: February 8, 2011 in anger, bathroom, Fear, health, health insurance, healthcare, Ramblings, RANDOM
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They say money can’t buy you love, happiness, etc. I beg to differ, but not in the way most would think.

I need, I want...

In my situation money would buy ‘comfort’. Money will not cure me, but it would make my life and my families much easier. You see the stars with MS and other chronic illness’. Montel has his own cook, nutritionist, physical therapist, child-care. Trust me, if I had that it would make life much easier and less stressful. So in this case, money would buy ‘comfort’! Most of he people on these shows with chronic illness depict the success stories. The ones who run the marathons etc. Their MS is the less severe form, and being in remission is a great thing and I am happy for them. But, where are the stories of the those with the severe forms, who have families and live on modest incomes with no extras like a cook, a nutritionist. You get the idea.

There are treatments out there that insurance will not cover, so in those cases money would buy me better health care.

Not sure where this is coming from tonight… maybe because I tried to take a shower in my partly done shower and realized it is not going to make that much of a difference. Roger got the seat and a couple of bars installed, which help. But I have to be careful as it is not all grouted and we have to be sure the water does not get all over the place. The shower itself was fabulous the aftermath, not so much. I am coming to the realization that even bars and a higher chair do not help me get up. My legs are near useless and I sat there and cried, why??? This was not supposed to be my life. Why not strike those who commit heinous crimes and those who do to want to be a giving part of society. WHY? And yes it is my right to ask why. There is no reason for this. I did nothing to deserve this, as many of my friends did nothing to deserve their illness’. So why?

I’m not naive and I know there is no answer for this question.

I sit here, again, wondering if I will be able to get in to my bed tonight. Will I be able to get up easier in the morning? I know these answers will not be ones I want to hear. I hate feeling this way. I am no quitter nor am I a whiner. But as of late I read people complaining about their colds and allergies and runny noses and want to scream at them, “Your piss ant issue will go away, mine wont!! So shut the fuck up and get over it!!” And that is not me either. I hate being this bitter, this angry. I think from all the times I hold it in, it is finally too much to take.

I’m lost and am slipping away from me more and more and I’m scared…

As Always…

xx, Tracy...

The Debut of The Padded Room – Straightjackets and Lace!

Posted: July 1, 2010 in Blog Talk Radio, healthcare, multiple sclerosis, Politics, RANDOM
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Drop by and listen if you get chance!!

Listen to internet radio with The Padded Room on Blog Talk RadBlessings and Hope!

Please support my friend Tina

Posted: April 29, 2010 in health, healthcare
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Tina!!

2010 Walk for Lupus

If you are able, please help my friend Tina. She lives courageously every day with Lupus.

———————————-

Lupus:

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

  • Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

  • Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
  • Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
  • It is believed that 5 million people throughout the world have a form of lupus.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
  • Women of color are 2-3 times more likely to develop lupus.
  • People of all races and ethnic groups can develop lupus.
  • More than 16,000 new cases of lupus are reported annually across the country.

W.W.J.D.

Posted: April 27, 2010 in health insurance, healthcare, Ramblings, Religion
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All over the net I read things people write regarding illegals, health care, blah blah blah. Send the illegals back where they came from. Why should I have to pay for some welfare case’s health care. The people writing these disgusting comments… Christians. Or at least that is what they call themselves.

So, I ask you… What Would Jesus Do?

Be merciful to all!

We are human beings, children of God, or so ‘they’ say. Well if that’s how Jesus would treat people, I want no part of it.

People come here looking for a better life. The majority are hard working men and women. Of course there will be some undesirables, you will find that any where you look. But, the majority are not bad people. And they do the work we do not want to do. Are you gonna get off your ass and do the jobs they do? If not, then shut the hell up. Is there a right or wrong answer to this? NO… so W.W.J.D?

Then you have those that do not want to pay to help our Healthcare system. Most are not welfare cases. Many are men and women that cannot get full time hours as most companies do not want to pay for health care. So these people work 2 or more jobs to pay for some sort of health care for their kids. Many times they cannot afford for themselves. But, God no, why should we have to pay for them. Why, because they are human beings.

Let’s hold the big corporations responsible for it. Speak out and tell them to get health care for their workers. Oh wait, they cannot afford it because the health care industry runs the world and they want money, nothing else.

Well, I would much rather spend my tax money on health care then paying for city beautification, that we never see happen. Or paying to help politicians rip us off some more.

So again, to all you Christians, W.W.J.D. I guess He’d just let them suffer and die, right? Even though my faith is not what you’d call strong right now, I do not think He’d let this happen.

Just wait…one day when you have to go before the Lord…you think you’re in… He is going to ask you… why, why did turn away my children when they only wanted a better life? Why, why did you turn away the sick people when they only wanted to be well?

I’d love to be there for your answer, because I think you are going to be quite surprised where you end up!

Remember, the only reason you are where you are, is the luck of the biological draw.

Blessings and Hope!

May I have some cheese with my Whine? Whiny Bitch alert!

Posted: April 26, 2010 in anger, healthcare, Pain, Ramblings, Religion
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Will you call the whaaaaambulance? How about some whhaaburgers and some french cries with a Mountain Boo Hoo!!

This be me…

Finally got rid of a two day migraine. A couple Ibuprofen for the pain, Benadryl to help me sleep, and coffee when I finally woke up this afternoon. Relief… for a lil bit anyways!!

Now my friggen right side of my jaw is in so much pain I cannot think straight. Is it my teeth? Maybe. Could it be a jaw issue? Maybe. I do not want to go to the dentist. I floss 2-5 times a day and brush twice day. WTF!! It’s probably thanks to all the amazing medications thanks to my MS causing my teeth issues. The dentist told me before, it can happen that way. Again I say…WTF!! Really?? One pain goes away and an even more agonizing pain starts. I almost squeezed a whole thing of Orajel on the right side of my mouth. When will the insanity stop, or at least cut me a fucking break??

How much am I, or anyone else for that matter, supposed to take. Please do not quote anything to me either. I think I have had my share of pain, my share of sadness, my share of shit. People tell me, ‘ You’re never given more than you can handle!’ Bullshit, that ended about 3+ years ago when a chair became my only means of ‘walking’.  I cannot take anymore, take it back, I do not fucking want it.

So, now it is probably root canal time. Really…am I going to miraculously get the money for it?? Don’t think so. So, I will just have to deal with the pain for awhile.

Please do not tell me it could be worse. As it does get worse every day. Funny thing is, no one with disabilities or illness’ ever say that, it’s the ‘healthies’ that do. So I say to them, ‘It could be worse!” But I hope for them it does not become worse.

Ok, I am off my ‘Whiny Bitch’ soap box….for now!!

Blessings and Hope!

Sonoma County CA separates elderly gay couple and sells all of their worldly possessions

Posted: April 20, 2010 in anger, Depression, healthcare, HELL, Hospital, humiliation, Ramblings, sadness, Tyranny
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Sonoma County CA separates elderly gay couple and sells all of their worldly possessions.

This is an outrage. No matter your beliefs, this is a terrible case of prejudice.

This angers me, saddens me, and shocks me! How could they do this? How could the courts let this happen??

Please pass this on, blog it, twitter it, anything to get the word out.

This WRONG on EVERY level!!!

Losing my mind!!

Posted: March 25, 2010 in health, healthcare, HELL, Holiday, Hospital, jewelry, mindless-thoughts, Ramblings, RANDOM
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Aha, got your attention! lol Actually my facebook status from their status shuffle says it all:

Lil’ ole’ me has lost my mind and doesn’t know where to find it, I’ll leave it alone, hoping it will come home, dragging my brain beside it!

I love it and it is so me!!

Things are going pretty good. Being back on Etsy is gr8. I made 2 sales, ty Frannie and Tina, and actually feel like making new things again. It gets me out of my room at least. I still am not feeling the ‘outside’ world yet since my hell stay, but baby steps ya know!

Awaiting return calls from some attorneys, but I think they are afraid of taking on the hospital. So, have some calls today to outside attorneys. You would think they [hospital liaison] would at least call to check in on how things are going, since they told me to keep themapprised on the bills. Ya, RIGHT!! lol They want me to forget, not happening.

My kids are off school for spring break. The girls get 2 weeks, the boy gets one. It’s actually been nice so far. Friends coming and going, so they are not bored. Bored kids are annoying kids. lol So keeping them busy is a gr8 thing. Austin went to Magic Mountain yesterday. FUN! He said he had a blast!

wheeeeeeeee

I love coasters!!! Woo Hoo!!

Hope everyone is having a great day/night wherever you may be!!

Blessings and Hope!

It is TIME!!

Posted: March 5, 2010 in dehumanization, Depression, dreams, Fear, healthcare, HELL, Hospital, multiple sclerosis, nightmares, Nurses, strength
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I have been hoping that the hell hospital would actually care about how I was treated there. Not so much!! Yesterday I received a letter from their Director of patient and guest relations. A basic, “We are sorry we did not meet your expectations, the nurse has been spoken to, and in the future we hope to meet your expectations.

click on letter to enlarge

I never even spoke to this person and she didn’t seem to feel the need to contact me personally. I have not slept a full night since my time there. I cannot leave my home. I can barely exit my room. I have been living in my pj’s and sleep most days since my nights are full of bad dreams. Here is the new one from last night:

*****************

As she awakens she feels pain, her arms sensitive to the touch. She looks down and sees small blood ‘spots’ from all the IV’s that did not work. Please no more. They laugh at her from the end of her bed. Their laughter is deafening and she wants to escape. Her wheelchair is no where to be seen. She drops to the floor and tries to crawl away from them. She feels hands all over her body, pinching, blood, laughter. Their faces are hidden by shadows, she closes her eyes so not to see. Wake up she tells herself, wake up, it’s just a dream, they cannot hurt you anymore. But like monsters under your bed, they will never leave. She opens her eyes, they are gone, she falls into the darkness…

March 5, 2010

*****************

That one woke me up around 2 am. Falling back to sleep was impossible. I feel so lost.

All I asked was that they find a way for people having these types of procedures to be allowed a private area for the cleansing process. To re-train nurses for IV insertions. To take care of my part of the bill for my hellish stay. [which is not going to break their bank] Not to charge my insurance for the 1st colonoscopy that they knew would not take and the IV insertion that was not even in my vein. I was told that someone would get back to me and my concerns would be taken to the proper sources. This was on February 22, 2010. Yesterday, I assume, was my answer. A generic, Sorry.

I have left message for two Attorneys thus far. I did not want to have go here, but they leave me no choice. I guess they figure people will give up as they do not have the time, the energy, or the support. Well, I have the time, energy [maybe not], support, all kinds.

Blessings and Hope!

So tired…

Posted: February 23, 2010 in dreams, healthcare, HELL, Hospital, mindless-thoughts, nightmares, Ramblings, sleep
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When I got offline today [9am] to watch a movie and rest, I had no idea I would sleep until 10 minutes ago [7:35pm]. And, I am ready to go back to sleep in a few minutes. The World passed me by today…

I guess maybe I need/needed it and will probably do it again tomorrow. My day of the walker use is back to the chariot. Legs will not cooperate. I feel it is the complete and total stress from dealing with and waiting to see what hell hospital is going to do, and not getting much sleep from all the nightmares. I will blog all about it when they let me know!

I look at it this way, I can catch up on movies I’ve missed, cuddle with my fur babies and make-up for the sleep the nightmares have been awaking me from. Good times!! :-P

Nigh nite!

Blessings and Hope!

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