Category: Multiple Sclerosis

Hope · Multiple Sclerosis · Ramblings · RANDOM

Taking a shower…

Tracy14 Comments

ALONE!! lol I have been trying to find the perfect ‘bathroom’ for my crippled butt. 😛 Had a few ideas, but wow they were either really time consuming or way tooooooo expensive. So, today while surfing the net for more ideas I came across those bathtubs for people who need a lil help entering and exiting etc. Well they have a new style now.

The shower series: http://premier-bathrooms.com/showers/

cool beans

open door

This would fit in our existing shower area:

out with the old

With the new one there is no step up, the doors open out of the way so no maneuvering around them. There is a built in shower chair  that folds up for space when not needed by me. Handrails, easy access shower heads and the list goes on. So, basically, it’s perfect.

woo hoo

Not sure on the cost, so put a call in for an estimate. Pray it’s not too way out there for us. This could be the answer to my dreams!!

**crossing fingers**

Maybe, the luck of the Irish will help me today!! HAPPY ST. PATRICK’S DAY!!

Blessings and hope!

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

Making it Through the Rain…

Tracy17 Comments

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!!

Fear · HELL · Multiple Sclerosis · Strength

It is TIME!!

Tracy8 Comments

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!

Fear · HELL · Multiple Sclerosis

Bring me to Life…

Tracy13 Comments

As I read through my Hell hospital blogs I get the chills. For some reason the thoughts, the memories will not leave my mind. I can see it all as if I am still there. Humiliation, fear, and so many more emotions. My mind goes 1000 miles a minute at bedtime and my sleep is not going so well. I know time will help to erase some of it, but how much time?

I actually, for the first time in over 3 weeks, did my hair and dressed in clothes. [real clothes, not pj’s] I was going to leave my house and go to the store for the first time since the hospital horrors. Didn’t happen. As the time drew near to go I had a panic attack. The thought of being away from my ‘safe haven’, near my tinkletorium, made me physically ill. Xanax didn’t even help. [ya know you’re in trouble when Xanax doesn’t work!] 😛

Happy, Happy, Joy, Joy

Still waiting for some kind of call back from the HH. Talked to them on February 22, and still waiting. How long is it going to take for them to let me know what they are going to do about this?

Is it time for the Attorney? Many are telling me, YES! Is that the only way to get them to listen, to provide quality care for their patients? Now I have some thinking to do on the matter. So, now we wait…

Blessings and Hope!

Health · HELL · Multiple Sclerosis · PAIN · Strength

Hell Hospital – Part 5 going home…

Tracy14 Comments

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!

Fear · HELL · Multiple Sclerosis · Ramblings

In Dreams – Hell Hospital

Tracy9 Comments

Due to my Hellish Hospital stay, I think this dream says it all. I have been having it more than I would like to.

She slowly wheels her chair down the corridor, doors pass, she can hear the laughter, she follows the sound. It is getting louder, the laughter, the muffled voices, she is getting closer, she is at the door. People in scrubs all around, faces lost, standing around the bed, someone is in the bed. She is crying through the sounds of laughter. Her face is cloudy, her face is coming clear. She is no longer in the wheelchair, she is in the bed, crying. Please someone help me…

©February 6, 2010

——————————-

Blessings and Hope!

Health · HELL · Multiple Sclerosis · PAIN

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

Tracy16 Comments

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!

Health · Multiple Sclerosis · Ramblings

Ah Life!

Tracy10 Comments

So, the 4 day pain in my head has quieted…now just an agonizing throbbing. My neuro called in a script to Rite Aid for me and they said they would not take it over the phone!! WTF! By the time they let us know it was too late for Rog to drive and pick up the prescription from the neuro. All this went on I was sleeping, or I would have said to call CVS or Walgreen’s. I have been a customer at this Rite Aid for 7 years.  They now have lost a customer, and I will be calling to let them know it!! rofl

Not much sleep last night, serious back pain. I’m thinking it is from lying down for the past 4 days or it may be an infection. UTI, Kidney, Bladder…one of those. Sadly can not go to the doctor as right now can not afford it. We have to pay 2000.00 oop before the 80/20 kicks in, then 3500.00 before full coverage. Thanks to an illness, that I did not ask for, and the greedy people behind Blue Cross. My doctor uses lab corp but they [ins] do not cover lab corp [Quest], so I need a new doctor now too. NICE!!

I’m afraid to tell my neuro too much of what’s going on with me as he will put me in the Big House! lol Then he’ll have them hook me up to some IV Solumedrol. He knows how much I love that stuff. I’m actually thinking it may be a good thing, as the pain is becoming too much for me. Thanks to Rite Aid, I ended up having to take more than one of my pain killers which dummied me up enough for the headache to go but brought on serious tummy issues. Ah, the joys of being me! [for bad serious esophageal pain, white bread de-crusted – pain is gone] Seriously!

So now I sit [back pain too much to lie down] wondering what today will bring. Sorry not more positive, bit it’s hard when life hands you all the lemons and your juicer is broken! 😛

Blessings and Hope.

Health · Multiple Sclerosis · PAIN · Ramblings

Headaches and Spasms and Pain…Oh My!

Tracy8 Comments

Three day headaches does not a happy Tracy make!!

It is like water torture; constant pain, split second relief, you smile and bam it comes back. Then due to lying down for the past couple of days, my lower back is on fire, and that makes my legs spasm. Happy, happy, joy, joy!! My whole body feels weak and my parts will not work they way they need to.I’m drained an my body feels ‘floaty’. Rog said, ‘that’s cool'[gotta love him]. hmmmm No babe, not so much.  😦

I called my neuro as I am hoping he will prescribe me something for the pain[s]. My pain med. is not working [figures], all it does is take the edge off. Not acceptable. 😛

So just a quickie! lol Off to lie back down.

Blessings and Hope

Multiple Sclerosis · PAIN

In Dreams – Falling / Doctors

Tracy3 Comments

She is falling, her dress flies all around her, she sees no end, not stopping, no slowing down. Visions pass by her eyes as if she is seeing her life all around her. Pictures in her mind of days long ago. Smiles, laughter, anguish, fear, so many feelings. Faces she remembers, faces that have no meaning. Are they of people to come or of those from a past time? Falling still, has time stopped or just slowed down to let her see. She reaches out to certain pictures, places she wants time to stop and bring back to her. The dress tickles at her face as it flows around her. She cannot help but laugh.

Faster, faster she falls. It is much to dark here. Fear hits, she can feel the blood flowing through her veins. No more laughter, she wants to stop falling. She cries out, no one hears, no one is there. The faces she sees flying by her are no longer smiling. They’re distorted, angry, scared. She closes her eyes, no longer wanting to see. Two words go over and over in her mind… ‘Save me!’

© 01/16/2010

**********

I went to my neurologist yesterday. Every time I go, I think part of me feels that this time will be it. There will be a new medication, a cure. See, sometimes I do think positive thoughts. 🙂 But, alas, not. I am falling more on my 18.2 foot trek to the potty with my walker. I spoke to him regarding a medication I have been reading about, Low Dose Naltrexone [LDN]. It is a medication used for drug overdoses, addicts, etc. in high doses to help the addiction or jump start the heart from od’ing. In small doses [1.5mg – 5mg] it has been found to help the sxs of MS, Fibro, and other autoimmune disorders. It brings the endorphin levels back to normal which help the immune system to recover and do what it is supposed to do. It is not a cure, nor does it reverse the damage already done by these disorders. But, It has been found to slow or in some cases stop the progression of the disease.

I printed out all the info I found and gave it to my Neuro. It is not widely used in the US as of yet. He is going to do some research into this, contact a highly regarded pharmacy, and hopefully get me started on it at a low dose to see if it helps me in any way. Since our insurance has changed [shitty blue cross] and we have to pay almost 3500.00 out of pocket until full coverage, we have to be careful what I try. He offered me a clinical trial for Tysabri, but that medication still is not my drug of choice. And the side effects scare the crap out of me. So, we will see what we can do about the LDN and take it from there.

I do not expect any miracles…but it could happen!

Thanks to Kathy for the heads up on this medication [LDN].

Blessing and Hope!