Anger · Darkness · Fear · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · sadness · Sleep · Strength

Depression and Fear are Paralyzing

The past few days have been hard. The stress from the denials and all of the subsequent appeals and the denial for the ER and then the reprocessing of that claim… It has been hell. My last MRI showed that my PPMS was not active. That MRI was about or year to a year and a half ago. I don’t even remember because my mind right now is scrambled. Yes, I could look it up, but quite frankly I’m not going to because I’m fucking tired. I get it, I’m in bed 24/7 so how can I be tired, right? My body doesn’t even understand awake and rest anymore. It’s not sure if it’s supposed to be up or down. I’m never comfortable anymore. There’s always pain. I’m not a neurologist and I haven’t had a recent MRI, but I know that my PPMS is active again. I believe it’s been happening over the past couple weeks or so. I have no energy at all. It’s hard to lift my head at times. I am so scared that I’m not sure what to do anymore. So I find these motivational quotes on an app that I thought might help me.I have courage, I haven’t given up on myself, so when am I going to be cut a break. These motivational quotes don’t work for everyone. I know, I know, if I look really hard it can work for me. 🤦🏻‍♀️ Sorry if I’m not miss optimistic right now. Most likely it is BECAUSE of my recent conversation with Independence Blue Cross. 

It seems that I am also going to have to fight, a.k.a. jump through hoops to be able to get to my doctors appointments. I haven’t been able to get out of my bed for so long (OK we did finally get me up for a shower last Saturday. But, it’s NOT gonna happen again because I can’t go through that pain again) I haven’t been to my doctors since before August 18, 2019. (my wonderful ER visit) So the gentleman from Independence Blue Cross found me a couple of non-emergent transports that they will cover in network that can possibly take me to my appointments. All I have to do is call these places to see which one will do it, ie; take me pick me up blah blah blah. Then I need to find out when they’re available, an appointment for my doctor, not in that order, and then… Look on the back of my insurance card call the number to make sure I can get pre-certified for this non-emergent transport. Are you fucking kidding me! I guess this happens to a lot of people if they actually made a meme for it. He also gave me the names of in-home physical therapy companies that I can call and see if they might be able to help me. Once I find a company that I feel comfortable with, I need to get to my doctor to have my doctor send in the paperwork to hopefully get in-home PT. 😳 I don’t think that the people realize at Independence Blue Cross the amount of pain it causes me to have my legs moved in to their proper position. It’s not like I haven’t explained it to everyone, it’s because they don’t give a shit. They don’t seem to understand that with these type of muscle contractures that I have, it needs acute inpatient rehab so you are monitored with the proper pain medications. but as we know it’s all about the money. And because their rent-a-docs feel inpatient is not medically necessary for me, I get to go through excruciating amounts of pain with in home PT. 🤬

But, I am going to play their stupid silly little games. I am going to jump through their stupid silly little hoops. What they don’t understand, or maybe they do, is I’m not going to be quiet about any of it. This happens to too many people too often. For fucks sake’s they’re running my husband’s medical care as well. But, I digress, that’s a whole other blog that I will get into very soon. 😏

So this is where I’m at right now. I haven’t been sleeping because I cry so often I can’t breathe as my whole head gets stuffed up. And quite frankly, if my PPMS is active again, it’s on Independence Blue Cross for not letting me get the health care that my doctors are trying to get for me that I need!!! Yes I completely know that I have a bunch of run on sentences, so sue me. I have never once claimed to be a writer. That’s my baby sister.

I’m sorry if it’s getting monotonous regarding my health care insurance, but I am that squeaky wheel and I cannot be quiet anymore. As always, have courage and be kind.

Health · Medical · Multiple Sclerosis · PAIN · Ramblings · RANDOM · sadness · Strength

DeNiEd AgAiN

Some of the not so great things that happened to me in the past six months or so is that I was denied acute physical therapy rehab. I went through every one of their appeals and was denied every time. They say for me it’s not medically necessary and basically that’s the only reason given. Let me think, I have severe hip contractures due to being bedridden, yet acute physical therapy isn’t medically necessary for me. 🤔 The story goes a little something like this…

On August 18, 2019 my husband was trying to get me into the sling for my Hoyer lift so I could get out of bed. As he started lifting me and the sling pulled up around my body, the pain was so excruciating I really believed my hips were going to break. Needless to say I never made it all the way up or out of my bed. We called 911 and I was taken to Palmdale regional medical Center. At that time we weren’t really sure what my hip pain was. We knew that my knees and ankles had contracture issues, but my pain management doctor was saying it might be arthritis, osteoporosis etc.. The ER doctor explained that my hips had contractures just like the rest of my legs. It was as if a💡went off in my head. Like, no shit… oh my god how could my other doctor(s) not figure this the fuck out. The rehab institute at Palmdale regional medical Center was where I had been for one month in February 2018, so I asked if they could contact my doctors and try to get me back in. It took the next two nights and three days before Independence Blue Cross came back with, DENIED. After exhausting all four of my appeals, (4months) I was DENIED Rehab. Not medically necessary. I completely understand that the doctors that work at these insurance companies are basically rent-a-docs that probably can’t get a job at a legitimate place, but come on, I’m the poster child for rehab.  In fact, for how severe my contractures are, the only options are surgery or acute physical therapy. So that in a nutshell is my denial for, realistically, life-saving therapy for me…Now on to my new dilemma where I’m being denied. They are now saying that they will not pay for my ER visit because it was not an emergency. 🤬 When a representative from Independence Blue Cross called me to ask about this appeal for this charge, I told her what the emergency was. I explained the same thing that is stated above; how I was trying to get out of bed with the use of my Hoyer lift and the pain was so excruciating from the muscle contracture’s that I could not do it. I could not move!! Now in my book that’s a fucking emergency. obviously it was an emergency enough that they paid for the ambulance. I mean really for fucks sake.

(Attached) is what the incompetent person, I’m trying to be nice about this, said in the DENIAL letter. “You stated that you were experiencing difficulty and could not stand so you went to the emergency room for services” is she fucking kidding me?!! First off I would never have said that because I haven’t been able to stand for 6 years 2 months!!! For fucks sake I’ve barely been able to get out of my bed. I’m not sure what part of, I’m bedridden and I was having pain in my hips trying to be lifted in my Hoyer lift, that she didn’t understand. So she either lied on that form or she just didn’t give a shit to listen to what I had to say.I bet it’s a little bit of both… Lied so that the insurance company wouldn’t have to pay which falls right in line with doesn’t really give a shit. I have a call in to her, so we will see if she calls back. They are on EST and right now it’s 4:56 PM PST, so I bet she’s just not gonna call back. I really believe that these people and these money corporations do this often so people like me are not given the care that is needed. They think they can be our doctors and that they know better than our doctors.🖕

So now I get to deal with all of this. Sorry the little attachment above is a little wrinkled. When I read that line for the first time, I lost it. Everything and anything in my reach was thrown. When I realized I was trying to pull my hair out and the scratching on my face started hurting I just broke down into a big heap of tears.

At this point my body has deteriorated more and more and my muscle contractures have gotten worse and worse. I have so many calls in to so many people and they either don’t call back, or they’re rude. If anyone reads this and you know of anyone that could help me, attorney, disability advocate, hell a juggler, 😜 please send them my way. I really don’t know how much longer I can go on. Have courage and be kind.



Anger · Darkness · Health · Primary Progressive MS · Ramblings

When?

 Primary progressive multiple sclerosis, end stage. There is no medication for it, there is no remission, there is no cure. So when do you say enough?

 I lie in my bed 24 hours a day seven days a week. When I do get into my wheelchair the pain is so bad I can’t sit for more than 30 minutes to an hour. So I don’t get it my wheelchair. Even lying in my bed I have pain constantly.

 I no longer have the caregiver as I cannot afford one. Hospice won’t even take me. They don’t consider what I have terminal. I guess it’s OK that I live another 20 years lying in a bed in constant pain. If that’s not terminal  I don’t know what is.  Fuck you hospice!

 Dr. Kevorkian  knew what my type of illness did to a person. He helped them die with dignity before they became so bad that they could do nothing for themselves.  I’m already there I can literally do nothing for myself. Except talk text and look at my phone and use a remote control to watch endless hours of television until my brain goes numb.

 I have a hard time holding utensils now. But I guess it’s OK if I just become a head in a bed that is in constant pain. People say tomorrow’s another day.  Not for me, tomorrow is the same thing, every day for the rest of my life.

 The new so-called medication for progressive MS is a big farce. Maybe it will help secondary progressive but that’s not even in the same league as primary progressive. Ocrevus, The manufacturer, when I called them basically told me I’m too far gone. On the disability scale I’m an 8.2. So I can’t take the medication. But they don’t really give you a reason why.

 I’m not looking for pity I’m not looking for any ones I’m sorry’s, I’m bringing about awareness to a disease that is looked at as a basic, oh well you have MS, disease.  It’s not basic it’s like living in hell.

I’m off, as I can barely talk without crying anymore. I just want to  have some control over my own life and not die a rotting shell of the person I once was.

Anger · Darkness · FUCK · Multiple Sclerosis · PAIN · Ramblings · RANDOM

Where is the rock for me to crawl under?

I’ve been trying so hard to get out out of  the ‘whatever’ mood I’m in. I’ve been blogging [duh], updating my jewelry shop[s], tweeting and pinning like a mad woman… but I just can’t seem to shake the blahs. I just wanna crawl under a rock!

hiding...

Tomorrow is the MSWalk2012 and I’m so not feeling it. My legs have not been cooperating. Even being in a wheel-chariot all the time the legs have issues. I’ve been getting the shakes, and from sitting all the time, serious ankle swelling. Not liking ‘kankles’!! 😛 Kind of sucks when you have to sit and then you get issues from it. **SMH** It hurts when the legs swell and embarrassing when they just start shaking all over the place. Hubby calls it ‘the rhythm’ and always asks if I wanna dance! Dork! lol I’m fighting between dealing with pain and embarrassment, to the guilt feeling of not going. My team, Tracy’sMSkateers are the best. They had a big ole bake sale at NBC/Universal yesterday to raise money for our team. Think they raised over 1000.00!! Woot Woot! I feel like if I don’t go I’m letting them down. I really want to go, but really not a fan of pain. I even bought a cute orange shirt for the walk…

I’m going to confess something I have not really touched on in the past. I hate me! I really do not like going out in to public due to the all the weight I have gained since being in my wheel-chariot. I was once tall [6′] and skinny. Now I’m short [4’4″ in my wheel-chariot] and huge. I have gained almost 60 pounds and I hate the way I look. I try to keep away from mirrors as I get depressed. I will take responsibility that I sometimes eat what I shouldn’t, but most days I eat right. It’s so hard to lose weight when you are immobile. I’m embarrassed by my weight, and prefer hiding out at home. I know the extra weight is not helping my MS either. It truly has nothing to do with what others think… it’s all about what I think. So in a nutshell… I hate what I have become.

xx, Tracy...
Ramblings · RANDOM

Etsy Blog comments

My comments to the Etsy Blog

First comment:

I, for one, am very glad Etsy finally took a stand. For me however, the stand came much too late. That terrible site was left up for much too long. Myself and many friends are already leaving the Etsy site.
For those ‘wondering’ about other unsure items, you must have been out of the loop regarding the site in question. The site clearly harassed certain groups of people, which was already in the terms. Still wondering why it took so long to remove.
My only regret is no longer selling or shopping here. Funny thing is one of the Etsy designers purchased from the shop and thought the demeaning and harassing cards were funny. Go figure!
Good luck to all…

Second Comment after seeing not much had changed:

ROFL!!! The site, with the offensive name, is still there as are a couple of the cards in question. One just had a word added to make it seem ok.
I’m all for freedom of speech, but this was/is straight out cruelty towards a group of people.

Guess it is ok to show a man hanging on a cross and call him ‘some dead guy’. Because that card is still up. And the other cards in questions are still showing in his sold items!

Nothing would have been done if we had not gotten together and received almost 25,000 signatures and Jane Velez Mitchell involved. All the cards would still be there. Etsy is a joke!

———————–

Everything I wrote was true and completely in tune with the blog. Seems they deleted this comment as the truth hurts and sent me a pm:

Hi there,

I recognize that you are upset over a specific shop, and I encourage you to send your concerns to content@etsy.com. The blog comments, however, are not an appropriate forum to talk about this, particularly when they do not relate to the post. I’ve thus deleted your comments and ask that you refrain from continuing to post about the issue. I hope you understand.

Best,
Alison

My comment back:

My comment had everything to do with the post seeing as you removed some but not others of the cards in question. Etsy did not do as they said.

My comments were in truth and in no way slander. This proves Etsy takes what they like and leave the rest!

I sent my concerns to your support with no replies. If a comment is true in nature, you have no right to delete said comment. That is in breech of the first amendment.

————————-

As stated above, Etsy is a joke!

Shop and sell with ArtFire, the only way to go!

Anger · Fear · Ramblings · Sarcasm

Insanity…

She can hear the laughter and can imagine the smiles on all the faces. It’s a party, a birthday party for her neighbor. She was invited, but she knew she would not go. Not because she did not want to, but because of the chair she could not rise from.

She cried in the shower so no one could see. She is mad, mad at the world. Her wonderful husband feels the brunt of her anger. The old saying, ‘You always hurt the ones you love’, seems to apply. She knows what she is doing, but she can not stop.

She is sad, she is angry. She hears the music next door. She longs to be there. She can’t. She knows they would move things around to allow her in, but she can’t. It is embarrassing, humiliating, to her. She knows no one would care, but she cares. So, she will not go, will never go.

She hides her pain behind her smile, behind her sarcasm. It is not pride as she has no more pride. It is her pain, her pain of remembering how it used to be. She will get through this, she always does. Or does she? She’s not sure.

Pain

Anger

Sadness

Hatred

Envy

She is filled with all of these. Want, the want to walk again. To be able to drive again without fear. To simply stand up without falling to the floor. To be able to hold her bladder. To not have migraines every week. To be able to sit up by herself without help or severe struggles. To not feel guilty for not being able to do things. To not feel pain all over her body. To be whole again. To not be angry. To not be sad. To want to live…

She is insane. Insane because she knows this is her life, but she thinks it will change. She asks over and over, WHY? Insane, because she expects an answer, an answer that will never come.

She…is me. And she wants to live again…

Blessings and Hope!