Loss · Quotes · Ramblings · Sadness

I have got to get my head right!

Like I said in my previous post, I’m numb. I was just watching a movie, and could not stop crying. Not so much because of the movie, but because of the characters. You know, being able to walk and all. I know, petty right? I just want to be able to get up and do my make up and go to a restaurant and sit in a booth. (OK I wouldn’t do it right now, you know corona and all) I just want to feel my feet on the ground again. For 2,461 days (give or take doctors appointments etc.) I have been in this bed. I know I should accept it and like a couple people have said, get over it, but that’s not an easy thing to do. I just feel like everything is crashing down on me. I don’t feel strong. I feel like I just want to fall in a hole and hide away.  I seriously cannot stop crying. And it’s not just a couple little tears, it’s ugly crying.

I know, I know that I will survive this. But seriously, sometimes I wonder what’s to survive?! I know logically that it’s taken me 2,461 days to get here, so good things won’t happen overnight. All I need to do is to be able to get into my wheelchair. You would think that would be easy right? It’s not. The pain in my hips I believe is getting better with each PT appointment, but the range of things I need to do I can’t do at my house. So then my mind goes back to Independence Blue Cross denying me rehab in the facility. I know I should let it go and get over that, but I’m fucking angry. I am so fucking angry. I’m never comfortable anymore. I can never find any relief. Before anyone asks, I am not suicidal. I’m angry! I’m angry at my doctors who dropped the ball 2,461 days ago! I’m angry at an insurance company who values money over human life! I’m fucking angry at rich people who have the money to afford the kind of help I need! I know it’s not their fault they’re rich. 😜 I don’t even know where I’m going with this blog but I just knew that I needed to get it out. 

Then I read all of these wonderful motivating quotes people do, so, when does it get better? I am moving forward. I am doing all the things I’ve been told I should do. I am trying to learn patience. I am trying to hold it all together. I am just really tired of only existing and not living. I miss being able to wear regular shoes. I miss being able to wear jeans. Oh you have no idea just how badly I miss being able to wear jeans! And oh my God, boots! I miss boots! I miss taking two stairs at a time. I miss being able to see over everyone in the crowd. (6′ tall here) I miss being able to just put on a bathing suit and get into a pool. I really miss going to the beach.  The one thing I miss more than anything, is to be able to go places with my kids, my family! I miss me.

I can’t take off my warrior mask. I cannot fall apart. I would love to be able to let go of the weight that I’m carrying. You have no idea. As I’m reading what I have written, WOW, do I sound like a little crybaby bitch. I am one of those people that hate people that cry and complain all the time over trivial shit, ie. the common cold and such. I really hope they never get something substantial because they won’t be able to handle it. But alas, then I feel bad for feeling that way because it truly is all relative to the person going through it. So then I feel like a real bitch. Then I get angry at myself for being a bitch, and the self deprecation cycle goes round and round. I just want to know why it has to be so hard.

If you’ve made it through my crybaby blog, thank you. I am trying to hold it together. I am just glad that it’s almost time for bed because I’m truly done with this day.

Have courage and be kind…

Craziness · FUCK · Health · HELL · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Sarcasm · Strength

How do you know how to feel when you don’t know how you’re feeling?

Lately when my alarm goes off in the morning I’ve just been lying in my bed for a good hour or more debating… do I actually open my eyes and wake up or do I go back to sleep?! My days run into each other and as of late I’ve been a day off. I’m still waiting for the Physical Therapy to get back with my insurance. I’m very thankful that my mom is paying for private sessions while I wait, but she should not have to do that. Independence Blue Cross is yet again sitting on their thumb and twirling. I’m jumping through their hoops and doing in-home physical therapy. The pain is horrifying. Unfortunately I don’t have the medications I would get if I were in an actual rehab facility. I just keep gritting my teeth and going for it. We should not have to deal with this crap when we pay good money for actual healthcare insurance. Our country has gone to hell in a handbasket over the last 3.5 years. I’ve never in my life had this much trouble with insurance. I feel like I’m in limbo.

Although I will say that in a way it’s good that I am stuck in my room in my bed right now. We have so many idiot privileged Americans that think they don’t have to wear a mask. Look asshole, you MUST wear a fucking mask. And please don’t tell me you have a medical condition that makes it impossible for you to wear a mask. If that is true, you should keep your sick ass at home during a pandemic. I know brains are in short supply right now with everyone that follows the idiot in chief. And now we have another shit show starting with Kanye West thinking he’s going to run for president. I really hope everyone realizes this is just a ploy, most likely between him and the orange Cheeto to take away votes. But, the orange guy only got in because of the electoral college. He did not win the popular vote! So just like the south losing the war, he lost the popular vote. 

You ignorant people are the reason countries are banning Americans right now. Our country is the laughingstock of the world. And please don’t call yourself a patriot and say you love your country! If you can’t wear a mask to protect others in your wonderful country, then you’re nothing but a piece of shit! I’m sure it’s quite obvious that I despise the idiot in the White House. Not because he’s a Republican but because he’s a vile disgusting human being. If you can’t wear a mask to help your country you are no patriot!

I know my blog is going all over the place today because that’s where my head is. I’m numb right now and I’m not sure why. I am deeply saddened by everything happening in our world right now. My heart breaks with all of the hatred from certain groups of people RACISTS that are being caught on video all over the place. Again I’m probably better off being trapped in my bed because if I were anywhere near these racist “Karen” bitches, they would be laid out on the concrete. I have no time for those disgusting people.

And please don’t come at me with all lives matter. No shit Sherlock we know that. But right now in our country black lives are in jeopardy. And quite frankly all lives don’t matter until Black Lives Matter! I will no longer sit by as a white woman and be complacent about this issue. I have friends that are hurting and I will stand next to them and fight with them! ✊🏻✊🏼✊🏽✊🏾✊🏿

Unfortunately those people running around saying all lives matter really only care about life in the womb. The minute it comes out, you don’t care anymore. I won’t debate anyone on this because it’s right out there for you to see. People are out celebrating the Fourth of July while children are sitting in cages in the United States of America. For those people that think that’s acceptable, you’re a piece of shit. (we seem to have a lot of shit in our country right now don’t we) Plain and simple! I know I know you’re gonna blame their parents. I’m sorry if I lived in a shitty country I would do anything I could to get my children to a better place. If you are a parent who wouldn’t do that, I feel sorry for your children. Well shit, right now I do live in a shitty country. That’s a thought to ponder. 

Let’s see, have I missed anything or anyone?! I think I’m good to go right now. I swear lately I have eye rolled myself into oblivion with all the ignorance that I’m seeing. 🙄 I am sorry, but it’s no longer that we have a difference in opinion, we have a difference in morality!

As always, have courage and be kind! 🖤



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

The human body truly is an amazing thing.

While I await more rehab through my insurance, I am having a private Physical Therapy. It really sucks when you have to pay for some thing out of your pocket to keep it going when you pay thousands to have healthcare insurance. I’m hoping this will be taken care of within the next couple weeks and my insurance will pick it back up. I knew I could not stop for the little bits that I’ve gained would be lost. I’m very thankful to my stepmom or as I call her, mom, for taking care of private sessions for me.

I really believe that I will be able to get back into my Hoyer lift and into my chair within the month of July. I’m realizing there are some medical issues I will have to get taken care of as well. Both of my knees have frontal torn meniscus’s. This causes some serious pain when bending my knees. But we are taking it slowly and the pain is lessening. I should’ve had these problems fixed years ago, but they would not fix the issue that caused the problems. My doctor told me insurance would not cover it because of my illness and the fact that I spent a lot of time in a wheelchair. So basically every couple years I would just have to get these surgeries to put a Band-Aid on the issue. I had already had one surgery to fix the issue and now I was going to need another one… That’s another story for another blog.

My body lets my physical therapist know when it’s had enough. My leg will literally stop any movement. If that makes any sense at all. It truly is amazing how the human body works to protects itself. I am learning the saying, move it or lose it, is so very true. I’m doing everything I can on my own to move my legs as much as I can, and my husband is also trying to help as much as possible. He has his own back issues and it causes him a lot of pain helping me. So it’s a lot of moaning and groaning going on as he moves me around. Old people problems. 😜

Patience is something that I have to work on. It really isn’t one of my virtues. I am learning and I know that it took 6 1/2 years to get to this place so it’s not going to be fixed overnight. This time I will not give up. This time I will not give in. This time I will fight for my life!

Have courage and be kind. 

Health · PAIN · Primary Progressive MS · Quotes · Ramblings · Strength

Oh the pain… the pain!

I had my FaceTime neurologist appointment and PT yesterday. Both went well. But… I am paying for the PT today. 😳

I so hope this is true for me. We actually got my right leg into a 90° angle. That was crazy. My left side, not so much. Today Roger (hubby) rolled blankets to keep my knees and legs a little more normal. It hurts quite a bit, but no pain no gain! Thank the universe for cannabis. 😏

Stretching everything is going to be a painful process, but the outcome will be phenomenal! Now here is the shitty part… No more visits per Independence Blue Cross. 🙄 I have to call Monday and get the pain management doctor to call in more visits. WTF!!! My concern is all the work we have accomplished last week will fade away waiting for Insurance to allow me more visits. I really don’t understand how they have the right to run my healthcare. It’s mind boggling. The worst part is that it will start all over. What that means is, I will have to have an admission visit again, then an evaluation visit again, and then the PT visits start. What a fucking racket. All the while people like me are screwed. I just keep telling myself to keep breathing. This will work out, we will find a way. Sadly this just proves to me why people do give up. We have to jump through so many hoops, it weakens our soul.

^^^ I say this, I just wish I could truly believe it.

Have courage and be kind. 

Happiness · Health · Medical · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

The light at the end of the tunnel perhaps…

I had my first in-home physical therapy appointment today. I’m almost afraid to be as happy as I am about it. Muscles were moved today that haven’t been moved for 6+ years. My right leg knee hip ankle, yeah the whole thing 😜 after a few minutes, didn’t hurt as badly. The left leg, on the pain scale a 10. He was almost afraid that my hip was out of the socket. Thankfully it’s not. I realized how the body protects itself today when at a certain point my leg went tight. It basically said, no more! Some of the problem is the knee. I have a frontal torn meniscus and wow!  It’s something that was never taken care of because it was the second time it happened. That’s a whole other story. A good thing is he is going to let them know what I need for my legs. Starting with a knee brace for my left knee. He was so helpful and even did the breathing with me. I have a pretty high pain tolerance, but a couple times I thought my leg was going to snap.

He will be coming back Friday. The problem I may run into is, of course, Independence Blue Cross. At this point I have four visits. Technically the first nurse visit to fill out the paperwork, and the PT visit just to assess my situation, along with the last visit when they sign you out of rehab whatever, and the visit today, that’s already four visits. 😳 Now that he knows the range of motion and what it’s going to take to help me, I should get more visits. I think I’m going to have to send an email to Jason at Independence Blue Cross. * I know there are many run-on sentences. I’m a little medicated as the pain right now is pretty high. Kind of like me. 😏

After PT I actually felt positive. That is kind of a strange feeling for me. I am going to go with it and see where it takes me. I just hope that Independence Blue Cross will allow me enough visits. I am definitely going to need a month or two since it’s only a couple times a week. If we can get everything stretched out then I’ll be able to get back in my wheelchair. Right now, that’s really all I’m pushing for. Once that happens, I can possibly get Physical Therapy to help me be able to transfer on my own. It could happen…

Have courage and be kind.

Health · Ramblings

The Coronavirus and You!

From a Very Wise Friend

Let’s say you wake up with a terrible cough, fever and body ache. You immediately go to the doctor and unfortunately you are diagnosed with covid-19. In the last two weeks you were not aware that you were infected, and you ignored “the rules”.

You hung out with some friends to eat a pizza, you invited people home and you even went to a park and a beach. You thought “I don’t feel sick. I have the right to continue living a normal life. No one can tell me what to do. ”

With the diagnosis of Covid-19 you spend the next few days on the sofa in your house quite badly, but soon you feel better, because you are young, you are healthy and you are strong. How lucky you are!

But you infected your best friend during that visit to your house, and since she didn’t know she was infected, she visited her 82-year-old grandfather, who uses oxygen to help him breathe because he has COPD and heart problems. Now he is dead.

Your co-worker, who has asthma, also caught the virus from you. Now he is in the ICU and he also infected his family members, who will not know it for two weeks yet. The boy who charged you for the pizza at the restaurant took the virus home, his wife has multiple sclerosis and this makes her immunosuppressed, she is not as lucky as you, so they take her to the hospital because she cannot breathe. They may need to induce a coma and intubate her. You may not be able to say goodbye to your loved ones. She may die surrounded by machines, without her relatives around her.

And all this because you were uncomfortable wearing your face mask or you did not like to stay at home or change your routines for a little bit over all other rights, and you wanted to continue living your life normally; You also believe that no one, no one, has the right to tell you what to do. But:

#socialdistance – NOT for you!

#usacovers – NOT for you!

#stayathome – NOT for you!

IT’S FOR EVERYONE! Responsibility and empathy is called. IF YOU TAKE CARE OF YOURSELF, 😷 you take care of the ones you love the most. Think about it! 🤔

Copy and paste it! That’s how I did it.

Have courage and be kind.

Ramblings

Quantity of life VS. Quality of life.

I will preface this blog by saying, at this moment I’m not depressed for my own reasons and I’m not suicidal. But I struggle with this all the time. I have no real quality of life at this point.

I’m not sure how I’ve kept myself from going crazy. I know that being a 100% trapped in a bed is foreign to most people. We have been trying since quarantine to keep moving my legs. At this time, nothing has changed. I am still unable to get into my chair or even into my Hoyer lift. There’s no way I can properly explain the pain from having contractures throughout your legs. The moment I sit up in my bed (adjustable bed), which I do every day as high as I can go, my ankles and my feet swell so badly. Even with compression socks and braces on my ankles. I am discouraged. We have been trying. No, I’m not giving up, but I am telling my truth. I am a realist and I’m not someone that sugarcoats anything.

I am so tired. By the end of the day my legs are so numb and tingly that I really feel like I’m going mad. Pain in my hips is excruciating from all the movement we have been doing for my legs. I’m struggling because quite frankly, it’s not helping. I need that hard-core 3 to 4 hours of straight up physical therapy at a rehab facility. And that is not going to happen. Insurance companies, namely Independence Blue Cross, and their rent-a-doctors are allowed to run our healthcare now. Again, I’m not being pessimistic I’m being realistic. Some people can’t distinguish between those two things. I am still waiting to get my money back for the transport to my doctors. And for some reason Jason is not returning my emails. Imagine that!

Again, I’m not giving up but I’m so tired deep into my soul. Every morning when my alarm goes off for my medications, I wish I could just continue to sleep. Nothing new happens in my life and it hasn’t for years. I’m tired. And it’s not the tired that normies feel. It’s the tired of chronic illness where every ounce of your strength is being sucked out of you and thrown to the wolves. I would love for there to be a, bedridden challenge. Where for one week, hell one day, people cannot get out of their bed for any reason. Not to go to the bathroom, not to brush your teeth, or to wash your face, not for food or anything you do on a daily basis. Where you have to have someone do everything for you and bring everything to you. I guarantee the majority of people won’t even make it through half of a day.

I am broken. I am damaged. Yet I’m still hanging on. I feel defeated, but I’m still fighting.

Something weighing very heavily on my heart is that my favorite Disney princess, my MS twin, my music guru, is fighting for her life right now. She truly is the only person that understands what I go through on a daily basis. My heart is breaking because I know she is so scared right now. She truly is the ultimate fighter. She is the epitome of strength, my hero. I know in my heart that she will beat this as well. I just hope the cost of all the tragedies she has had to endure in the last year and a half does not break her spirit. Although looking back at everything she’s had to go through, her spirit is strong! If you pray, if you send out blessings, thoughts, whatever it is that you do, please send them to her. Just call her, Beautiful Disney Princess. If you happen to read this my twin, just know that I love you so much and if you need me you know how to find me. I’m sending all of my energy your way and to your beautiful family. You see chronic illness doesn’t just affect the person with it, it grabs and holds onto the whole family.

I know this kind of went all over the place today. That’s where my mind is right now. And for those people that are saying, everyone’s depressed right now with the quarantine and being trapped in their homes etc. Sorry, but no! My life is quarantine. Many of you are heading out and doing whatever you want because you think it’s safe. Quite frankly, it’s not and you’re an idiot if you think it is. The numbers are now going back up thanks to memorial day weekend. And I truly believe because of this, my beautiful Disney princess is fighting the coronavirus. Let that sink in. You may not hurt yourself, or your family, but you are in a roundabout way, hurting others! I hate to sound so harsh, but I kind of hope someone you love gets sick so that you wake the fuck up and realize anyone can get this. Oh man… Before I get angry I’ll stop right here.

Have courage and be kind!

PS. Stay the fuck inside, if you go outside wear a mask, social distance, it’s not over yet!



Health · PAIN · Ramblings

Baby steps

Today’s fun is trying to get my ankles used to wearing my Forrest Gump shoes again. 😂 It’s been a while and I think my legs are going to be pissed off at me tonight. 🤷🏻‍♀️

Tomorrow we will be trying to get me in the chair again. My lower back is still hurting really bad so we didn’t want to push it today.

And now I’ve had these on now for 2 1/2 hours and I think that’s long enough for today. 

Baby steps… 🖤

Have courage and be kind.