Archive for the ‘healthcare’ Category

After a bad fall about a month ago, I’ve been in and out of hospital emergency rooms and spent a little bit under a week in hospital. Lotta good it did, as I’m worse now than I was before I went in. I need in-home care I need help but the doctors keep blowing me off. And my doctor’s nurses, forget about it incompetence galore!

They keep telling me they’ll call me back once they get information about in-home care. Has not happened at all. They don’t even call my prescriptions when they expire anymore. I have to call and remind them. Yeah that helps with my stress level! I’ve been with the same doctor for 17 years!

I can’t even get into what happened in my last hospital visit a couple of weeks ago as it just brings back too many awful memories. Not as bad as back in 2009-2010 but almost.

At this point I’m completely bed ridden, my legs do not work at all I can only move them if somebody moves them for me hard to transfer to my chair I won’t even get into going to the bathroom. LOL that’s way too much information… TMI!!

Bottom line I need home health care, and my doctors are ignoring me and not helping me. So me, being the bitch that I am, I have an appointment with a new neurologist on January 28 and an appointment on the 18th of this month with the new internist. I’m done, and I’m taking charge and taking back my power!

For those who know me, know I’m pissed and when I get pissed I get shit done. They know not who they are dealing with! LOL I’m done believing that this is it for me and I’ll never move again that I’m going to be stuck in a bed the rest of my life.

I Even got my new wheelchair and it’s the bomb, but I can’t even transfer to it. So what’s the fucking point right now!

Fear-Pain-Anger-Depression

I really do wonder sometimes… What’s the fucking point!

[sorry for spelling and or grammar mistakes talk text doesn’t always work exactly as it should]

need sleep...

A day for me to look forward to!!! Finally!!

My new wheel-chariot is only a heartbeat away… I hope!

Quantum Rehab

Quantum Rehab

On Tuesday a representative is coming to my home to see if I qualify for this rehab chair. Then they’ll take measurements and get started on getting me the chair of my dreams. I want it to recline, elevate my legs, and be able to rise up a few inches. I am hoping to get the base in orange for MS and animal awareness.

This is a huge deal for me. With the leg elevation option I’ll be able to get out of my bed more and maybe be able to get back to making some jewelry.

I haven’t had much to look forward to for a long time. Some may think looking forward to a wheelchair is silly, but when a wheelchair can mean independence, it’s not so silly. I love my old chair, but it cannot elevate my legs and I really need that and the other other options the new one has. I feel like a little kid getting ready for Christmas!!

Love and Light!!

Quantum Rehab

Quantum Rehab

This is the chair I need, want, and must have! It has a leg elevating option which will help my ankles not to swell. It reclines and can elevate a few inches to help reach things. I’m working on getting this sometime in the next few months. I have to jump through insurance hoops, but I’m used to that. MY neurologist is sending the store my diagnosis report, then they get with my insurance to see how much, if any, they will pay. Once that is done a representative comes to my home to get measurements, etc.

Insurance will not help much. They feel a wheelchair only needs to get you from point A to point B. It does not need elevating legs, recline, or elevation. They call those ‘luxuries’!  Are they fucking kidding me!! It’s a ‘luxury’ to elevate my legs, to recline, and make it easier to reach things? WOW!! I guess it’s a luxury to be crippled too! grrrrrr I didn’t ask for MS so why is it so hard to want to be able to have a chair that helps me live my life with MS.

I’ll do whatever I have to, to get this chair. I spend my time in bed as the chair I have is a basic model. After 20 minutes of sitting my legs swell and my lower back is in pain. This ‘new’ chair will allow me to get up and get going. I will be able to make my jewelry again because I’ll be able to elevate my legs at the table. I haven’t made anything for so long and I miss it terribly. If I have to, I’ll sell myself on the boulevard… Okay probably not, but you get my point. lmao I really need this chair. When I found it whilst surfing the net, I started crying. I saw my ‘new’ life with this chair. I want an orange base for MS and animal awareness. It will be so cool. I feel like a little kid waiting for Christmas!

I’m  back to getting the excess weight off again. I figure, if I have to be in a wheel-chariot, I’m going to be a hot bitch in a wheel-chariot! I’ve never been heavy. So this weight gain is very depressing for me. I look in the mirror and cry. Why I don’t look in the mirror much. I know if I lose the weight it will be easier for me and those who help me on a daily basis. I even turned down cherry cheesecake danish today. OMG, it was not easy! Paleo and gluten free is my lifestyle. I will do it this time… I have to.

Love and Light

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!

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...

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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.

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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.