Anger · Family · Health · Ramblings · RANDOM · Sarcasm

What?

Really...you do it then!

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…

who really gives a shit?!
Health · Hope · Ramblings

The Padded Room featuring Carol Urban!

This week’s guest is Carol Urban. She will be sharing her story of courage and strength in the face of adversity.

Carol was diagnosed with Stage III colon Cancer September 2007.
We hope you join us for this amazing story of Hope!

http://www.blogtalkradio.com/rlrn/2010/05/13/the-padded-room–unlocked-and-unplugged

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 girls, passionate about being real in the midst of their own real-life health and emotional challenges, are here to encourage you in yours.

**Disclaimer** Aside from being certifiable, the ladies from The Padded Room hold no certificates, licenses nor are medical professionals in any area related to mental or physical issues. Please seek professional treatment if you have questions or concerns about your health.

Blessings and Hope!

Health

Please support my friend Tina

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.
Health · Hope · Multiple Sclerosis

The Padded Room – All About Meeeee!!

The Ladies of the Padded Room

Show is at 1PM Texas Time!

Ruby and Keith will be interviewing me today on living with Progressive Multiple Sclerosis. [click in pic to take you to the show]

Our show is made possible by the wonderful founder of The Real Life Radio Network, Laurie Zieber!

We hope to ‘see’ you there!

Blessings and Hope!

Support the Fight!


Health · HELL · Hope

The Padded Room – Living with Scoliosis

Our show this Thursday is a must ‘hear’! We will be talking with Ruby Cantu, co-host of The Padded Room.

http://www.blogtalkradio.com/rlrn/2010/04/15/the-padded-room–unloc…

Ruby has suffered with severe Scoliosis for most of her life.
————————-
Scoliosis:
Definition
By Mayo Clinic staff
Scoliosis is a sideways curvature of the spine that occurs most
often during the growth spurt just before puberty. While scoliosis can be
caused by conditions such as cerebral palsy and muscular dystrophy, the
cause of most scoliosis is unknown.

Most cases of scoliosis are mild, but severe scoliosis can be disabling.
An especially severe spinal curve can reduce the amount of space within
the chest, making it difficult for the lungs to function properly.

Children who have mild scoliosis are monitored closely, usually with
X-rays, to see if the curve is getting worse. In many cases, no
treatment is necessary. Some children will need to wear a brace to stop
the curve from worsening. Others may need surgery to straighten severe
cases of scoliosis.

————————

As shown in the next photos, our Ruby, needed surgeries.

Keith Zieber, our fabulous producer will be helping me, Tracy, interview Ruby!

Ruby is in the ‘hot seat’ and we hope to see you there!!

Blessings and Hope!

Health · Hope · Multiple Sclerosis · Strength

The Padded Room – Unlocked and Unplugged!

WE DID IT!! Through our nerves and medications and everything!

For an amazing blog on our debut show please click on the link below:

Ruby Cantu on WordPress

Ruby Can Too

For more info on our amazing guest. Click on the link below:

Lucinda Wormsbaker – The Light Fandango Candle Company

Right now, when you purchase the Orange, Multiple Sclerosis Compassionate Candles, 2.00 from every purchase goes to my MS Walk 2010. So, please drop by Lu’s site and check it out!

The World's Best Candles

A huge TY goes out to the whole team at RLRN and to Laurie Zieber, the founder and all around fabulous lady!

Pretty Woman

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

Our next show, April 8th will be focusing on Lupus. Our guest will be the Fabulous Tina Sickinger! She is an amazing woman who struggles with Lupus every day of her life and survives. She is full of hope and fights this monster Lupus with the help of friends and her amazing family! We hope you will join us for our show on the Real Life Radio Network in The Padded Room- Unlocked and Unplugged, on April 8th.

The Ladies of the Padded Room

In any struggle, there is always HOPE! Join us!

Blessings and Hope!

Health · HELL · Holiday · Ramblings · RANDOM

Losing my mind!!

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!

Craziness · Family · Health · HELL · Hope · Multiple Sclerosis · Ramblings · RANDOM · Sarcasm · Strength

Making it Through the Rain…

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] 🙂

And, as always…

Blessings and Hope!!

Health · HELL · Multiple Sclerosis · PAIN · Strength

Hell Hospital – Part 5 going home…

January 29 – February 4 – Antelope Valley Hospital, Lancaster California. Second Floor East.

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

Once back and settled in the nurse came into her room and said she was discharged. Her last meds were an anti-D, tummy pill, and a uti pill. Since she was discharged, no more for pain. And she was in some pain. The nurse tech, K, brought her some jello. [had not eaten much in 3 days and was starving] She had asked for, at least, a soft meal before she had to leave. Finally a meal, a regular meal, was brought to her. She had a few bites, but it was making her a tad ill. What part of soft meal did they not get? Bottom line, she was discharged so they could give a shite. After a mix up over a facet block she had thought they were going to do for her degenerative disc disorder, she just wanted out of there and fast!!

Her hubby had to go back home and get their van and her WC. Once he got back, he packed her up and got her into the WC. They said it would be a few before someone could take her out. ROFL!! NO NEED, I have my own chair and am out of here!! Her hubby could not roll her out fast enough.

When she got home she fell into her bed asleep for 6 hours. Upon awakening she had chills, skin crawls, and fear. Withdrawals from 6 days of Dilaudid IV injections every three hours and no weaning down, just sending home. It only takes 3 days to cause this and she was on it for 6. She wanted, needed more. She had Dilaudid pills so she took one along with a Xanax to calm her nerves. After some research on her hubbies part, he found out that Valium is used to help withdrawal sxs from this type of medication issue. In her case, she was lucky. Due to her MS she had Valium to help her sleep when needed. She took it from Thursday night until Monday morning for the withdrawals to finally subside.

Her issue is this, what about those that do not know this or have help for it? Even with the Valium it was a very scary feeling. How can a hospital, any hospital send people home without weaning medications down?? Irresponsible.

But that part of her nightmare was over, she was out of Hell Hospital, through the withdrawals, and home with the people who love her. She felt lucky, but what about those who do not have the support? What do they do? Who helps them through?

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

This is the reason for these blogs. I will not back down and they will have to make changes.

I have spoken to the hospital representative and the head of nursing. I’m not sure what they think. They have not contacted me to let me know if anything is being done. I WILL be contacting them back as this is not going to go away. De-humanization, incompetence, and straight out uncaring service should never be tolerated. If I have to talk to the Head of the hospital, I will. If They need me to come in because S says it is not true, I will come in and face her with the truth. I am not under medication anymore, I am still having issues in my heart with the treatment I received, but I will face anyone who says it is not true. The truth WILL prevail.

I am finding me way back day by day. Will I ever be the same ‘me’ again, no. Being de-humanized takes part of your soul from you. Does this make me a weak person? NEVER! I will be strong with the truth and will do anything I need to do to stop this treatment. I will take this all the way.

I just want the ‘nightmares’ to stop…

Blessings and Hope!

***NOTE – my Dilaudid pills have been crushed and put into used coffee grounds to soak the med out and thrown away. After taking the one at home, I wanted them gone!

Health · HELL · Multiple Sclerosis · PAIN

Hell Hospital pt.4a the Colonoscopy [2nd and last time]

January 29 – February 4 – Antelope Valley Hospital, Lancaster California. Second Floor East.

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

This is the day I have dreaded. This is the blog where I will be ‘naked’. We will call the nurse tech in question ‘S’, so as not to use names. This blog, again, may have some TMI moments, so do not read if you cannot handle it.

And remember, “My tears are not a sign of weakness!”

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

She was wheeled back to her room in her bed and slid back into the bed 4 slot. Her minded raced as she knew she was going to have to go through the another Colonoscopy tomorrow morning at 8 am. She also knew this meant drinking more of the cleansing drink. Bed 4 was the first bed on the right as you walked into the room. No one was in the bed 2 slot, so she asked to be moved to there as it was by the window and had a bit more privacy. The commode could be put against the wall, not next to a person’s bed, and she would be far from the door there. The nurse checked and said they would move her. She asked for them to roll her bed to the spot. One of the nurses asked why she could not just walk to the bed there already!! OK, Really! What part of, ‘I have MS and am unable to walk’ haven’t you understood since I have been here 5.5 days already!! Needless to say, the rolled her bed from bed 4 to bed 2.

The nurses got her all set up and moved her things over to bed 2. Commode against the wall, far away from all. In the bed next to her was a pregnant woman, approx 34 weeks. This confused Tracy completely as the hospital had spent lots of money in the previous years for a fully equipped Maternity ward. Not enough room at the Inn, so they shove this poor girl in a ward with sick people. [Tracy still scratches her head over this today]

On her mind now was getting mentally ready for the ‘drink’. She told the nurses in no uncertain terms she would NOT drink the go lightly!! She wanted the sour tasting drink from the 1st night she had to cleanse. It was not much better, but it was less to drink and she could stomach it.

There was one amazing moment, when her husband brought her newly 16-year-old son to visit her. She was in the hospital on his birthday [Jan. 31] and they would not let him in as he had no ID saying he was 16. He’s only 6′ tall and looks every minute of 16. Somehow daddy got him on this night. Even sitting on the commode, covered up, her baby hugged his mommy and told her he loved her. This was the one light in her stay. They only stayed for about 10 minutes as it was getting late, but that 10 minutes was worth a lifetime!

She had drunk the drink a bit before her hubby and son had come. Her cleansing [she thought] was pretty much done. Strangely, she was still not running clear. For a moment she smiled and laughed to herself that when the next time someone told her she was ‘full of shit’, she could say ‘yup I was’!! 😛

Her neighbor across the way awoke and started vomiting, badly. She grabbed the call button and told them that the woman needed help now. After a few minutes, she hit the button again, this time not really needing it as she is sure the whole floor heard her. GET IN HERE NOW, SHE IS SICK AND SEEMS TO BE HAVING A HARD TIME BREATHING!!!!! They finally came and helped her. Tracy was pissed off and disgusted by the treatment she was receiving and the treatment of others. She heard a man’s cries almost everyday for help. Was she in a horror movie, where were the cameras?!

At this point she was exhausted and figured she could finally get off the commode and go to sleep until the next day. She cleaned herself, got into the bed, and fell asleep.

She awoke in complete terror and humiliation. She thinks it was around 1-1:30 am or so. She knew she could not clean herself this time. Tears streamed down her face. She knew she had to hit the call button, but how could she? She was horrified and shaking. How could this be happening to her? She slowly reached for the button and pushed. A voice asked her what she needed and she said she needed some help. She could feel the burning and finally S came in to the room, to her bed. She quietly told S that she thought there was a problem. As S removed the sheets and protector covers she knew there was by the sound from S. S would have to go and get some things to clean her. She heard S making a gagging noise and a eeech sound as she walked from the bed.

She tried to hold back the tears from flowing, but after that she was fighting a losing battle. She kept apologizing as she felt so de-humanized and humiliated by this person. S came back with a bucket of warm water and cleaning cloths. She haphazardly wiped Tracy down quickly to get her off the bed and back on the commode so she [S] could clean the bed. As she got on the commode she took off her gown and fumbled with the snaps on a clean gown so she could put the new one on. S was more concerned with getting the bed cleaned than getting Tracy cleaned.

Again, she apologized to S. The comment back stung in her ears, ‘Well there is still a lot more to clean!’ Tracy took some of the wipes she had and tried to wipe herself in the spot she knew S had missed and was not planning on re-doing. By now she knew she would not get back into that bed. The fear was too much for her to handle. Once S got the bed made she asked her to help set up her MAC on the bed so she could play games as she did not want to fall asleep again. S leaned over Tracy and they grabbed the MAC and set it all up. Tracy was not to see S again!

The next thing she remembers is waking up on the commode [3:45am approx], legs numb, pain in her back, and her game over. Her bottom was burning from the negligent cleaning S had done and she reached gently for the call button. S did not answer the call, but the RN did. She took one look at Tracy and went and got a new bucket of warm water, cloths and ointment. She gently helped her to her feet, leaning over the bed and thoroughly cleaned her. Her legs, her lower back, her bottom. Then she applied and ointment to the burning area. Tears fell from Tracy’s eyes, she felt dirty, De-humanized, humiliated. The RN’s were not supposed to do this, but S never returned. [probably better for S not to return!]

After she got her all cleaned up, the RN got her back in to the bed, and gave her something for her pain. She tried to fight sleep, but she could not.

She woke up to a new batch of nurses, shift change. The NT she liked, K was there. Again, still not running clear, so time for a fleet enema. K was caring and compassionate and helped her through it, and cleaned her when needed. They had postponed the procedure from 8am for about 30 mins or so. After the fleet and a warm water enema, she ran CLEAR!!

This time a gurney came for her. They asked her to scoot over to it… Really!! I’ve been here 6 days now and you still do not get I need help doing this. OMFG!! Finally, with help, they got her on the gurney and headed to the GI part of the hospital. The two amazing nurses she had the day before were not on her procedure. She was very sad by this. When they came in they change the chart so they would be in on her procedure. This made it things so much better.

The next thing she remembers is waking up and the GI nurse telling her it worked and all was good. She was so relieved! They came and took her back to her room. By now she was hurting and a bit thirsty and hungry. Almost directly after she got all settled in, her hubby got there the Nurse came in and said she was being released. Nothing for pain, no food…

**to be continued**

Blessings and Hope!