Category: Primary Progressive MS

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Hope Hope Hope

TracyLeave a comment

Two years ago I had so much hope. I was in the rehab and I was getting stronger. For the next three weeks or so I’m gonna be seeing all of these posts. And every time it comes up in my Facebook memories it feels like a punch in the stomach. They kicked me out too soon and there was no follow up. We tried “at home” physical therapy, and it was a joke.

If I had had two more weeks I probably could’ve gotten to the point where I could transfer myself to my chair.

I really did have so much hope but sadly I’m finding that hope is paralyzing. Have courage and be kind…

*** there will be an update tomorrow night regarding my transport to and from my doctor. If it wasn’t happening to me I wouldn’t believe it. 😢

Anger · Fear · Health · HELL · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

My soul is tired but my will is strong…

Tracy5 Comments

Yesterday was an eye-opening experience for me being out of bed really for the first time since August 18, 2019. I am in so much pain today and sleep did not come easily last night. I now understand fully and completely that in-home therapy is not gonna help me at all. I need to be in a place where they re-train my body to move again and help me deal with the pain in my hips. It’s going to be a process and it has to be hard-core. I was up all night thinking about the night I fell on October 10, 2013 and how everything led up to where I am now. I need neurological physical therapy in a facility, NOT at home. I’m going to need the proper medications for the pain and I need to learn how to move again. When I say I’m like a newborn baby, I’m not being sarcastic. I know it’s hard to believe. 😊 I am now going to make an appointment with the neurologist so he gets on board with my pain management doctor about hard-core rehab. The ambulance service comes early Friday morning to take me to my pain management doctors appointment. I’m scared to death. I was only in my chair for a couple of hours and the edema was so bad yesterday it really freaked me out. I’ve never had it that bad. I know that I’m going to be in a lying down position, but that’s how my legs were yesterday I think it was more about the upper half of my body. I don’t even know how to explain it. What I have realized is if something doesn’t happen quickly I’m seriously screwed. I don’t think it’ll ever come back. I don’t think I’ll ever be able to move right again unless something happens now. They’re hoping that I am too ill and too tired to fight. We all know it’s about money not about anybody’s health or well-being. I am tired. I am fed up. I am so close to breaking. But unfortunately for them, that’s when my strength shows up! This IS life or death for me. That’s not an overstatement! If something doesn’t change quickly I will not be here much longer. My body is breaking more and more every minute I’m trapped in this bed. Somethings got to give!! I know I know this is really in your face. But I will never back down from this because it is my life! I’ll say that again, this is my life! so now it’s time to get all my ducks in their proverbial row, get to all my doctors appointments via stretcher, and bring it! I’m seriously tired just thinking about it. Please universe give me strength!

Wait till they get a load of me! 😈

Have courage and be kind.

Craziness · FUCK · Health · HELL · Primary Progressive MS · Quotes · Ramblings · Strength

It’s the boredom that kills you

Tracy8 Comments

As I am lying here trying to find something on TV, everything just hit me at once. My emotions went all over the place. Silently screaming and crying so no one in my house hears me. How long can one lie in the same spot every day? How many books can one person read? How much TV can one person watch? After a while each thing you do becomes boring. You lie the same way at all times as you can no longer roll your body to either side. I’ve actually had people tell me how lucky I am to be able to just lie around all day and have no big responsibilities. Really? 🤔 Maybe for one day or possibly even a week, but 6 years 3 months and counting… You must be fucking ridiculous! Mental torture is 100% accurate! When people tell me they can’t imagine, they have no idea what they would do, they could never cope, etc. They are 100% correct. They can’t imagine the darkness that goes through my mind every day. They have no idea how many nights I pray to whatever entity is out there to take me home. They couldn’t cope with realizing that death would be a beautiful freedom.

Sometimes I wonder which is more crazy, the thoughts that go through my mind or the fact that I stick around for them. My favorite ‘people’ are those that say, “No you’re not going crazy you’re just upset with your situation.” Oh how lovely that would be if it were that simple. I would love just to be ‘upset’ with my situation. That would be much easier to take. 

Have courage and be kind.

*** just a little FYI, I’m just venting and I hate having to add that but some people, the people that don’t know me, take some things I write in the wrong way. 🙄 If I didn’t get my feelings out, then I’d be worried. Thanks everyone… 



Anger · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · Sarcasm · Strength

Round and Round We Go

Tracy6 Comments

I’m probably the only bedridden person that can actually jump through hoops. Actually I’m probably not. I got an email, not a phone call, giving me the same information regarding non-emergent transport. Not sure he actually spoke with them regarding accepting Blue Cross as only one of the three actually accept this insurance. I completely understand why the other two don’t, as Blue Cross doesn’t pay! That in itself is disgusting to me. I was told once I found one that could help me that I should call to get pre-certification. Today I did that with the one company that actually takes independence blue cross. But alas, it is not I that calls for the precertification. I called the pre-cert phone number which took me to Accolade, not Blue Cross. Accolade informed me that I need to go through my doctor to show proof that I need an ambulance ride to and from my doctor to be allowed this service. You know being taken by stretcher to and from my doctors. Yeah, because everyone wants to go by stretcher to their doctors appointments. Are they fucking kidding me?! The Accolade rep did help me out by calling and taking care of all of this BS for me. The first person that actually helped and has done what they say they’re going to do. And she isn’t even a Blue Cross employee. As of now, I have an appointment on the 28th and will be picked up at 7:30 AM so I can finally see my doctor again. But, I’m not holding my breath.

I wish I could say that I am no longer stressed regarding this, but this is only the beginning. I need to get to my neurologists office as well as my urologists office. I had to put off surgery to remove all the bladder stones because of my inability to get out of my bed. Yes I will say that again, I had to keep putting off my surgery because I could not get out of my bed and was turned away from Independence Blue Cross for inpatient rehabilitation. I wonder, do I have to go jump through these hoops every fucking time I need to see my doctor(s)? Do I need to prove that I need to go by stretcher again and again? I truly am disgusted by Independence Blue Cross. ^^ Me, every time I have to talk to these people and every time I have to send an email when they cannot return an actual phone call. And I will say it again and again, how the fuck do these people sleep at night knowing that they are withholding care from another human being that needs specific care?! I will get my inpatient rehabilitation! I will get the care that I need! I will not allow this despicable company to be in charge of my health care over my own doctors!  People we need to stand up and say no more! We need to write to our representatives, call them out, acquire an attorney if needs be, we need to say… We are not going to take this any more! Do I seem angry, a little pissed off… You have no idea! 

Have courage to those who try to keep you down, and be kind!! 

FUCK · HELL · Medical · Multiple Sclerosis · Primary Progressive MS

Broken

Tracy1 Comment

I am really in the thick of it right now. I have not heard back from Independence Blue Cross, so I’m in limbo. Most likely I’ll have to call Accolade who is the go-between. We pay so much money for health insurance every year, yet we are not ‘allowed’ to speak to the actual insurance company reps!! 🤔 It is absolutely ridiculous. Independence Blue Cross is 💯% withholding care from me. How can that be acceptable? Independence Blue Cross is really a joke. The incompetence over there is astounding.

I’m tired… But I’m not going to stop… I’m broken… But I’m not going to stop…

Have courage and be kind! < The people at Independence Blue Cross should really take heed of that simple sentence. I really do wonder how they sleep at night. 

Anger · FUCK · Health · Medical · Multiple Sclerosis · Primary Progressive MS · Strength

Manic Monday – Insurance Saga

TracyLeave a comment

My lastest dealings with Independence Blue Cross was all about getting phone numbers from the representative at IBX  for non-emergent transport, PT places etc. Today I made my appointment, far in advance, for my pain management doctor. I called the non-emergent transport companies that were given to me from Independence Blue Cross. I know, redundant, here’s why… The first company I called told me they no longer take Blue Cross insurance. The second company I called said they no longer take Blue Cross insurance because they never get paid from Independence Blue Cross insurance. 😳 The third company said, you have to call the week of your appointment and then there are no guarantees that there will be availability. OK well that’s just fucking fantastic! So let’s recap; the phone numbers that I received from the representative at Independence Blue Cross were ALL dead ends. Now I could pay cash for one of them which would be $283 upfront and then $75 an hour for however long it takes for your appointment. Alrighty then I guess I’ll just pull that cash out of my ass. So tell me what the fuck is the point of having health insurance if it doesn’t help you. We pay thousands of dollars for this insurance and at this point they basically have told me to fuck off and die in my bed. I’m not even going to get into calling the physical therapy places, because talking to those people dropped my IQ many points. I just needed to know if they’ve dealt with people that have contractures things like that. Not one of them could answer the question. It was as if they were reading off a script, “All of our physical therapists are very good. They do their jobs well.” OK good for them, that’s not what I fucking asked you. 🤦🏻‍♀️

My first reaction to all of this this morning was to completely snap. But I held it together. I took deep breath’s and started uncontrollably laughing. I am so angry right now there is no way to even measure the anger that is boiling up inside of me. I know more than anyone, that it’s not good for me blah blah blah. But come the fuck on… Cut me a fucking break… Why can’t one thing work out for me like it’s supposed to. Why??!! I’ll tell you why, INCOMPETENCE!! I’m dealing with people that are reading out of a notebook that the insurance company gets them. I’m dealing with people that have no humanity. I’m dealing with people that would be happy if I just took it and died. Well I have news for you Independence Blue Cross, I’m not going anywhere in fact I’m going to be your worst fucking nightmare! This right here is the end of my rope. Please believe me when I tell you, you really have no idea what you’ve done! 

And as always, have courage and be kind! 

Anger · FUCK · Health · Medical · Multiple Sclerosis · Primary Progressive MS · Strength

Manic Monday – Insurance Saga

Tracy2 Comments

My lastest dealings with Independence Blue Cross was all about getting phone numbers from the representative at IBX  for non-emergent transport, PT places etc. Today I made my appointment, far in advance, for my pain management doctor. I called the non-emergent transport companies that were given to me from Independence Blue Cross. I know, redundant, here’s why… The first company I called told me they no longer take Blue Cross insurance. The second company I called said they no longer take Blue Cross insurance because they never get paid from Independence Blue Cross insurance. 😳 The third company said, you have to call the week of your appointment and then there are no guarantees that there will be availability. OK well that’s just fucking fantastic! So let’s recap; the phone numbers that I received from the representative at Independence Blue Cross were ALL dead ends. Now I could pay cash for one of them which would be $283 upfront and then $75 an hour for however long it takes for your appointment. Alrighty then I guess I’ll just pull that cash out of my ass. So tell me what the fuck is the point of having health insurance if it doesn’t help you. We pay thousands of dollars for this insurance and at this point they basically have told me to fuck off and die in my bed. I’m not even going to get into calling the physical therapy places, because talking to those people dropped my IQ many points. I just needed to know if they’ve dealt with people that have contractures things like that. Not one of them could answer the question. It was as if they were reading off a script, “All of our physical therapists are very good. They do their jobs well.” OK good for them, that’s not what I fucking asked you. 🤦🏻‍♀️

My first reaction to all of this this morning was to completely snap. But I held it together. I took deep breath’s and started uncontrollably laughing. I am so angry right now there is no way to even measure the anger that is boiling up inside of me. I know more than anyone, that it’s not good for me blah blah blah. But come the fuck on… Cut me a fucking break… Why can’t one thing work out for me like it’s supposed to. Why??!! I’ll tell you why, INCOMPETENCE!! I’m dealing with people that are reading out of a notebook that the insurance company gets them. I’m dealing with people that have no humanity. I’m dealing with people that would be happy if I just took it and died. Well I have news for you Independence Blue Cross, I’m not going anywhere in fact I’m going to be your worst fucking nightmare! This right here is the end of my rope. Please believe me when I tell you, you really have no idea what you’ve done! 

And as always, have courage and be kind! 

Friday · Movies · Multiple Sclerosis · Politics · Primary Progressive MS · Ramblings · Sarcasm · Strength · Stupid Stuff

Thank God it’s Friday Feelings

Tracy1 Comment

TGIF bitches! Technically Friday doesn’t mean much to me. My days all roll into one. I have to look at my iPhone calendar every day so I know what day of the week it is, as well as the actual date. The only good thing about Fridays is that my husband is home on the weekend. OK sometimes that’s not a good thing. OK OK I’m just kidding. (or am I) 😈

This past week has been pretty uneventful. I did have a couple of really good meltdowns. Quite frankly sometimes they really do help. I spend my days playing in Facebook, putting my headphones on and cranking up my music as loud as they can go, reading when my eyes permit it, and of course television. I have pretty much every channel and streaming service known to man. Even then most of the time there’s nothing on. I keep my TV on all the time. Mostly it’s for background noise so I don’t fee so alone. But there really is only so much of the idiot box you can watch before you go absolutely insane. I stay away from the news channels for the main reason I cannot stand listening to the orange guy in the White House. Every time I hear him speak my IQ drops a few points. I prefer talking to my dog. The conversation is much more intelligent. there you have it… I don’t talk politics on here but now you know how I feel. Sorry, not fucking sorry at all! 

Now I am going to get lost in Bridget Jones’s Diary. To all reading, I hope you have a wonderful weekend! As always, have courage and be kind!

Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Strength

Thursday Thoughts

Tracy

Sadly people with chronic illness do this all the time. We do it because we know others don’t REALLY want to know how we REALLY feel. We know when you ask us, “How are you?“ That you don’t want us to get down to the nitty-gritty. The answer you want is the one we give, “I’m fine.”

Let’s face it that’s the easiest answer to give. I’ve literally watched peoples eyes glaze over when I do tell them how I REALLY feel. When that happens I usually just stop talking and ask them how they are. Trust me, they love to talk about how they are. And that’s OK. It’s human nature.

Have courage and be kind…

Anger · FUCK · Health · HELL · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness

Weird Wednesday

Tracy10 Comments

I was cruising the Internet and this picture popped up. It’s not meant to be sad it’s not meant to scare anyone. But I’m not going to spend another six years and three months in my bed. Without help, proper help, I’m never going to get out of this prison have a bed. My ankles suffer from dropfoot and contractures. My knees haven’t been able to straighten in about three years. And my hips I can’t even get in my Hoyer lift because of the pain. This has been going on for a very long time now and nothing has changed. I really thought my time in rehab in 2018 was going to save me. I fought so hard I did so well, then nothing. How do people that are bedridden see their doctors? I know they can call non-emergent transport, then try to coordinate that with their doctors appointments but first they have to make the calls to make sure it will be approved. Really? Making something hard even harder.

I wish I could be the shiny happy person that people want me to be. But that’s not gonna happen. I’m angry. I’m pissed off. I get it life‘s not fair blah blah blah. You know the people that say that to me… People with no chronic illness. I guarantee they wouldn’t last one day trapped in their bed not able to even get up to go to the bathroom, be able to roll over in their bed, or sit up without help. They would break the first 20 minutes.

Tears! 😂😂😂 No, if you could read my mind you would be screaming at the top of your lungs for help. I am so angry and I know that anger doesn’t help. But when every year it just gets worse, sorry I can’t put on that smile every fucking day for you. I’m angry about people who I see complaining all the time about the tiniest little things. Yes I’m an asshole. I can’t sugarcoat shit every fucking day. I really just want it all to end. I really really want freedom. I’m so tired of being in prison for a crime I never committed.

Have courage and be kind