Today is the last day of MS awareness month. Please keep doing your part to spread awareness. For those of us with the disease & our families, it’s all year long.
#MSAwareness #MarchIsMSAwarenessMonth #MultipleSclerosis 
Have courage and be kind. 
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.
This GIF popped up on Facebook and when I saw it I felt empty. I decided to post it because it really does sum up my life. I have been trapped inside my decaying body for approximately 6 years 2 months. It is actually a bit more but I removed doctors visits, visits to the store before my surgery in June 2014, and the occasional visits to my dads. In that time it equals to approximately 28-30 days that I’ve been out of my bed. I don’t know how it happened. What I mean by that is, I don’t know how it got so bad. October 10, 2013 I fell. I was transferring to go to the bathroom, and as I stood up my legs went limp like cooked noodles. They did no x-rays at the hospital that I can remember, they just really chalked it up to MS. The hospital and my doctors knew that I was unable to stand sit up, pretty much paralyzed from the waist down, etc. They did the Solu-Medrol bullshit which did nothing for me. Then they basically sent me home with no real after care.
This is where I don’t know how it all happened. The fall definitely started it, and then I go blank. The depression I remember was paralyzing just like my body. Then in a weird whirlwind of doctors appointments the next thing I knew I was scheduled for colostomy and urostomy surgeries for June 10, 2014. Was this medically necessary or was it done to make it easier for everyone around me? I don’t really know anymore.
Why wasn’t I offered acute rehab? Why wasn’t I offered in-home nursing care? I don’t know! 🤷🏻♀️ I do know that a friend, an RN, had to come to my house to catheterize me so I didn’t piss my bed every five minutes. Not sure why my doctors or the hospital didn’t do that for me. I also know, looking back, that I was completely fucking lost. I have never been someone to lie down and be stomped on, but I guess I could not find my strength back then. The surgery, for me, what horrific.  and the next couple of years were literally lived as if I were in a dream.
I will fast forward to now, because I don’t have the energy to really talk about it much more. All I know is I am trapped in a body that is destroying itself from the inside out. Since I was denied rehab August 18, 2019 my body is deteriorating more and more. i’ve exhausted, in their mind, all appeals. DENIED!! 🤬  Because of this, my legs are becoming more contracted. Independence Blue Cross basically feels it’s not medically necessary for me, acute rehab! Because their doctors I guess are my doctors now and they know better. Are they fucking kidding me! I’m the fucking poster child for acute rehab! Here is a link of what is happening to me and what I sent to the insurance company thinking they would actually understand it and help me. Bahahaha They either cannot read or they just don’t care. I’m going with the latter. People are telling me I should contact news agencies, attorneys, etc., but the places I’ve contacted obviously don’t think that any of this is wrong. Either that or they’re just scared to death to take on Independence Blue Cross. I guess in the world we’re in right now it’s OK for companies like this to throw away the disabled, people with chronic illness, because we are the people no one really gives a shit about. And quite frankly, I’m tired!!! I have no help whatsoever! Mentally, physically… Nothing. 
I am 100% in prison for crimes that I have never committed. The prison that is my body and the four walls of my bedroom. There is only one or two people that completely understand what I’m going through that I know. And when other people say, they know what I’m going through, they completely understand, yet that person/persons are shown standing up in pictures and going places with family… no, you have no fucking clue what I’m going through. And you should be really fucking glad you don’t. If I were able to even stand up I would never be in this fucking bed. So please don’t talk of things of which you know nothing about. You may share my illness but you don’t share what’s happening to me.
What I hate the most about all of this is the person I’m slowly becoming. I really do believe I’m going to little mad, I can no longer see the light at the end of that tunnel, and I’m not sure why I even bother anymore. Yes it’s a new year blah blah blah… but for me there will be no changes. AND I am NOT being pessimistic, I’m being realistic!  I will add that you don’t need to worry people, I’m not gonna kill myself, off myself, end it, whatever. Do I think about doing that every fucking day… Yes I fucking do! But, I won’t and believe me it’s not for the reasons that you are probably thinking. 
And now, I think I’m done for the day and I think I’m going to medicate so that I don’t care what’s happening to me. And for those of you that act like I’m a stoner or something, fucking A right I am! Cannabis isn’t going to kill my kidneys or my liver like Norco and Xanax and all the other drugs they want to put me on. So yeah I love my weed. And to anyone that says that’s bad for you or it’s addicting or it’s a gateway drug, educate your stupid ass! Or better yet go pour yourself another drink or take one of your sleeping pills and then talk to me. OK I’m getting off base and I’m starting to get pissed so I’m going to end this for today.
So are you loving my new unapologetically me yet?
As always, have courage and be kind!

This quote is so true, and in its own way, scary. 
I said I was going to be unapologetically me etc. and tell my truths. A big truth and a very scary truth, is that in this moment I have no idea what or where I was going with this blog entry. The thought completely left my being. I just can’t find the words. 😪 Logically I know that it has something to do with this picture, But no matter how hard I try I cannot remember. So, I think I’m going to go and cry for a little bit…
Have courage and be kind!
Sleep in one of the many wonders of the universe. Something that is not always easy for me. I think because my body is always at rest my brain is not sure when it should sleep or not sleep. 😴There have been times where I am up for 3 to 4 days without any sleep until I finally pass out from exhaustion. 😳 Thankfully that hasn’t happened in quite some time because I found a few things that really help me. I thought I would share and maybe it might help someone else.
For a while I would watch Dr. PimplePopper videos because they would knock me out. I don’t know why but her videos can be mesmerizing. LOL I know gross! But, If you know me you know I like gross. 😂
Then I started using an app called ‘Insight Timer’, which I recommend highly. I like to listen to one of the recordings that is called, Floating. It’s very calming. I found one last night that is called ‘Sacral Chakra Tibetan Singing Bowl. It was quite beautiful and I love the sound of the singing bowls. I have tried guided meditation, but like with books on tape, the voices to me were not soothing or calming. The only time I have ever been able to do guided meditation was when I was able to do yoga for MS many years ago. The yoga instructor, Colleen, had the most beautiful accent and when we would finish with yoga she would do a guided meditation with us. I always fell asleep instantly. Her voice is like an angel’s. 😇
Then a friend of mine, Victoria, sent me a link to some really cool videos called ASMR on YouTube. Autonomous sensory Meridian response (ASMR) – a feeling of well-being combined with a tingling sensation in the scalp and down the back of the neck, as experienced by some people in response to a specific gentle stimulus, often a particular sound.
I was honestly very skeptical about this. When I first started watching I have to admit I was kind of giggling a lot. What are these people doing? 😜They were clicking their tongues, tapping on various items, whispering, and doing off-the-wall role-play. But, lo and behold, the next thing I knew I was fast asleep. ‘Whispers Red’ and ‘Sophie Michelle’ are my favorites. I tried listening and watching a couple of the male ASMR videos, but their voices were not very calming to me. Sorry, not sorry! LOL
Do a search in YouTube for ASMR videos for sleep. You will find a lot.
You do have to look around because some people don’t realize we just want to have a calming video. There is one person that does it and she’s constantly talking about how people are stealing her ideas. Seriously! Everyone pretty much does the same thing. I tried to watch hers, but it was a no go. LOL I honestly don’t want to hear about someone else’s troubles 😮 so not one of my favorites. 😊
Another thing I have tried was books on tape. The only problem with that is you can’t choose the voice. LOL I just did not like the voice of the ones I heard. I have to have a soothing voice whether it be male or female and I have yet to find one. Although, if Morgan Freeman would do every book on tape that I want, I’d be OK with it. 🖤
I hope that something I have a mentioned in this post can help someone else, because then my sleepless nights and finding things that work… are worth it. 🖤
Have courage and be kind!
That feeling of comfort… That feeling of no pain…
It’s been so long. But I found a spot, even if only for a moment, there was no pain. It could be the adjustable bed, it could be the medicinal meds. ✌️ Whatever it is, it is AH-mazing!!! I can’t lay on my side or move that much, so for the last four years I’ve literally been on my back. (minds out of the gutter) and now as I am talking this blog in to my phone, I’m starting to feel a little bit of pain. It’s mainly the butt bone!! 🤪 If my butt had a voice it would probably tell me to get the fuck off of it!
So I’m watching ‘Grace and Frankie’, season four. It’s freaking funny as shit! And yes that is how my mind works, it flies from one thing to another. I can’t keep up with it most days. That’s probably why I do not sleep easily. My mind goes from 0 to 60 in about a fraction of a second.
So, hey, I just adjusted my bed and now the pain is gone again… Hooray! And now I have one dog sleeping between my legs under the covers and my adorable little pit mix, who is as sweet as the day is long, lying next to me.
^^^ And this is what happens when I am bored, unsupervised, and highly medicated. Snapchat pictures with filters. Does it get more boring than that??!! You have to admit they are fun and they make you look adorable. So why the fuck not.
Peace ✌️
It’s hard to know if it truly is working. I think I feel changes but then I wonder if it is real or imaginary. I can still move my toes around better, but then I wonder if it is better. It’s very hard to explain my emotions. I want it to work so bad that sometimes I think I am making it all up in my head. Sometimes it seems that it is easier to transfer, then the next time it’s a struggle. I’m still dealing with the insomnia but not sure it is from the Ampyra or the MS. It has been hard to sleep way before the Ampyra, but it seems worse now. I’m hoping it is a side effect that goes away as I do not want to have rely on sleeping aids.
Blah, blah, blah! 😛
Took my Ampyra at my 7pm time. I actually went to sleep at 10pm which is early for me. At 12:30 am I’m up. Hubby is snoring as he did not put the Snore EX mouthpiece in. I can hear the girls in the front room watching tv and camping out. I’m becoming quite irritated at all sounds I am hearing. I keep rolling hubby over and asking him to put the mouthpiece in. I get a sleepy ‘ok’… and he rolls back over and snores. After about an hour of this I get a bit more ‘aggressive’. Put the fucking mouthpiece in or I am going to smack ya over the head. SUCCESS!! He finally gets it and all is quiet. I’m lying there, completely exhausted, but unable to find sleep.
2 am… pain in my calves. I am used to pain in my legs but nothing like this. It felt as if someone had my calves in a vice tightening it more and more.
It’s now 2:30 am and I’m deciding if I should pop a Norco or not. The problem with Norco is it kills my stomach if I do not sit up after taking it for at least a half an hour. So that’s out. I do not know when sleep finally came, but the next thing I know my cell alarm is going off at 7 am. Ampyra time! I then read about the side effects for the nth time:
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seizure (convulsions);
pain or burning when you urinate;
problems with balance; typical for me
numbness, burning pain, or tingly feeling; GREAT
relapse or worsening of MS symptoms;
Less serious Ampyra side effects may include:
sleep problems (insomnia); DOH
nausea, constipation, upset stomach; umm hmm
weakness; uh MS doh
back pain; Degenerative disc disorder
stuffy nose, sinus pain, sore throat; coughing at night
mild skin itching. GREAT
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When I read this I have to laugh. MS already does most of this all by itself. So whose to know if it’s MS or the Ampyra. I know the leg pain is the Ampyra as I have never hurt so bad in my calves before. My dizziness has worsened, and my throat is bugging me more than normal. Above, in red, are what is happening. With most medications, side effects do lessen with time. *knock wood* So, I will remain on it for a few weeks hoping I can get used to it all and that it will lessen with time.
aarrrghhhhhhhh…
Blessings and Hope!
Making it Through the Rain 