Health · mental health · Multiple Sclerosis · Primary Progressive MS

You have multiple sclerosis…

Twenty-three years ago today, I was told, you have multiple sclerosis. I’d been searching since 1986 because I knew something was wrong. I was diagnosed with chronic fatigue syndrome and EPV. I was also diagnosed with clinical depression and anxiety. Go me! Back in 1986 MRIs were not a test doctors really ever did unless there was an accident of some sort. And no one would’ve thought multiple sclerosis when they looked at me. 👀

What my doctor saw was a healthy young woman who was working full-time and going to college at night. Chronic fatigue and the Epstein-Barr virus were easy to diagnose. Even getting these diagnoses I kept searching for answers because I knew something else was wrong.

Then, in 1997, a PA asked me to walk about 10 feet for him. I did and he immediately ordered an MRI. A physicians assistant diagnosed me. He said all he had to do was see how I walked and he thought it was either lupus or MS. The drunk walk. LOL my MRI showed many lesions of MS. My lumbar puncture was clear so I figured someone was wrong. I went on to get two second opinions and was informed that yes I have MS and I am primary progressive. I was so hoping they were wrong. They could’ve diagnosed me with the MRI and saved me from that awful lumbar puncture. 😂

I wish I could say I’ve come to terms with The MonSter that is MS, but I haven’t. Life as I know it was taken away from me and my family. MS is a wicked beast and there is no cure at this time! When people say, it’s just MS, I want to junk punch them. 😜

It’s not, just MS! It’s a debilitating, paralyzing, awful disease. We need more awareness and we need a cure… hopefully in my lifetime. 🖤

#MSWarrior #NeverGiveUp #KeepFighting #WeNeedACure

Have courage and be kind
FUCK · Medical · mental health · PAIN · Primary Progressive MS

Days that turn into years…

I was bored so I did a Google search on how many days it’s been since I’ve been in bed since my fall on October 10, 2013. Technically it’s more like 2,462 days taking into account doctors visits and things like that.

I also realized it’s been almost a year since I have been dealing with constant hip pain and have not been able to actually have a shower. Okay, don’t gross out I do bed baths. This timeline was when I had thought I had broken my hip and had gone to the hospital and Independence Blue Cross denied me rehab.

I probably shouldn’t look at it like this, but there you have it. I’m kind of numb. Physical Therapy hasn’t started back up yet. Quite frankly does it even matter since insurance will only give me two actual physical therapy appointments? Okay in reality they gave me four physical therapy appointments, two of which was checking me in and signing me out. Now, unfortunately for me, the young man that was helping me privately has not been able to be here because of a Covid scare so we are waiting to make sure he is OK. I know I have to keep positive and try to find the good in every day. Unfortunately for me, that other fucking shoe always has to drop when things are going well. I really hate that fucking shoe.

Being trapped in a bed is no walk in the park. Literally. And let me explain being bedbound to you. Being truly bedbound means you cannot get out of your bed for anything. I understand that people try to understand what I’m going through, but please don’t tell me you are also bedbound when you are not. It really downplays the pain of what I’m living through. Especially when I see pictures of you out of your bed doing things. Don’t get me wrong, I am so very happy that you’re able to do that, but please don’t use the term bedridden or bedbound, because you are not. Now, once I get my pain under control, I will go longer be bedbound. I just keep hope every day that I will be able to one day get my pain under control. The only problems I foresee are what has been my problem from the time I fell, my doctors…

Have courage and be kind.

Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings

Round and round and round we go…

I am in a mood and somehow I can’t find my way out of said mood. Still awaiting Physical Therapy to be covered by my insurance company. Is it any wonder that I’ve heard nothing from Independence Blue Cross? I barely reimbursed half of the money back from the transport company they told me to use. At this point they are denying me the ambulance trips with AMR and the hospital visit. I’m getting bills from that amazing time that I’m going to collections for it. 😳 Sorry but you can’t squeeze blood from a turnip… or some shit like that. I guess they don’t feel suicide is an emergency. I’m sorry, attempted suicide.

Months would’ve been easy, my waiting is moving on into my seventh year. That light at the end of the tunnel that was starting to come into view, is now flickering. I truly believe I have to keep fighting but I also understand that things may never change. I have to learn to be able to wrap my head around how my life may have to be. I’m not giving in, but I do have to be a little more realistic. I’m tired. My mind is tired. My body is tired. My soul is tired. 

Fuuuuuuuuck

Have courage and be kind.

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! 🖤



Fear · Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings

We can’t do it alone…

Since my husband’s been home thanks to the corona, we’ve been moving my legs more and more. It’s all been leading up to getting me into my chair. Today was that day. I wish I could say that it worked and I got into my chair. But I can’t. The pain in my lower back, my hips, and my knees was so excruciating I couldn’t do it. I was scared we were going to fracture another bone in my back. I’m so angry and bawling like a little kid. I’m angry at myself that I just didn’t bite the bullet and have them throw me into my chair. The pain was/is worse than the contractions I experienced giving birth to my son. 😢

We will try again, hopefully tomorrow. But after today, I’m scared… so scared. It really feels like I’ll never get out of his bed. I am bedridden in every sense of the word. I know I say it all the time, but wow, did my doctors drop the ball in 2013. And wow, did Independence Blue Cross fuck me in regards to Rehab. It just sucks knowing that there is no way to get help. We can’t do it alone. I’m thankful that tomorrow is my counseling appointment as I’m falling apart right now. I’m so disappointed in myself that I couldn’t do it. I know I shouldn’t be, but I am.

Oh well…

Have courage and be kind.

mental health · PAIN · Primary Progressive MS · Ramblings

Letting go…

This is tough for me. I can see myself sitting up and moving around my room. When I see myself, I still see the kid that I once was. I have cried so many silent tears for all that I’ve lost. Believe me, I have tried to move forward and truly accept my new normal. It sounds easy enough, but it’s so very hard. I think the boredom gets to me after a while. It’s almost seasonal in a way. It feels like every three months or so I fall into a depression. I’m trying to recognize the signs of my downward spiral(s).

I constantly fight with everything that I feel I should have done when I fell in 2013. Why didn’t I scream at them for rehab, why didn’t I try harder, etc.? I’m learning to forgive myself for that. There was nothing I could’ve done as I’d never been in that situation before. My doctors dropped the ball. I’m trying to let go of the anger.

I’m going to discuss this with my therapist on Thursday. I think it’s something that has been festering for so long. I have to get it out. I feel like I’m all over the place right now, so I will end here. 🖤

#LettingGo #ChronicIllness #PrimaryProgressiveMS #TheBedRiddenLife

Have courage and be kind.

Fear · Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings

You’ll get through this!

I have made it through a couple times where I didn’t think I was going to make it. I wish I could say that it’s going to be OK, but I don’t know. I’m trying really hard every day and hoping that something is going to give. I just can’t go another 6+ years in this bed. I’ve had to learn patience, which has never been one of my virtues. I really want to stay positive but I don’t see me getting the help that I need. I’ve been in this bed for over six years and my body has, well, died in a sense. It’s going to take a lot of time and a lot of hard work to make my legs go back to a normal position. Unfortunately, we don’t have the money or the good insurance to get the help I need. And in this moment in my life, unless you’re trapped the way I am trapped, I understand you’re not going to understand. I know, blah blah blah. I just needed to vent it out. I’m struggling, but I’ll get through this. I’ll get through this to wake up trapped again. But, I’ll do it because that’s what everyone wants. OK, that didn’t come out the way it was supposed to, but I think some of you understand.

My legs are jacked the fuck up. I can’t straighten my knees or bend my ankles properly. I’ve been stuck in this bed for so long as I sit up, in my adjustable bed, I get dizzy. My body has literally died being in this bed. Ten to twenty, and I’m being generous, physical therapy visits won’t do anything for me. I can’t sit up unless I have help or something is behind me. But like I’ve stated before, Independence Blue Cross took me out too soon from the rehab. I was sitting up on my own. But when you get kicked out of rehab and you get no good in-home physical therapy, it all goes away.

Yes I know it’s obvious I’m struggling. I just am not sure how to wrap my head around it all. I can’t see the light at the end of the tunnel anymore and that’s what scares me. But I’ll keep fighting and hopefully one day it will take me to where I need to be.

I’m sorry if it’s all over the place right now. But I can’t get my thoughts in order so, there it is.

Have courage and be kind.

Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

We have to keep going!

We must keep going… I know that know. Although, it can be so hard to do. The home health nurse came over last week and now I’m waiting for the physical therapist to call for an appointment. We are not sure how many appointments I’m allowed through Independence Blue Cross. Sadly, it probably won’t be enough. Again, I’ve been in this bed for over six years. The damage done is much more intense than a few at home PT appointments. All about the money and giving their higher-ups bonuses at the end of the year. Meanwhile, I’m trapped in my bed thanks to, in part, Independence Blue Cross. they kicked me out of inpatient acute physical therapy in 2018 too soon, and now they won’t give me any proper care. According to Independence Blue Cross doctors, it’s not needed. My family does as much as they can, but without real help… I really feel like I’m going to be stuck in this bed for a long time. Unfortunately in the world we live in today, insurance companies run our healthcare. Profits over people. I’m still waiting for them to give me my money back for the transport services. With everything going on the world right now, we could really use that 900+ dollars back. Greed prevails… 😳

I’m trying really hard to keep going. I believe I will, but I just need help. My counseling appointment went really well last Thursday, and I will be talking to him again this Thursday. So that’s a plus.

I’m still feeling quite a bit lost but this time I am reaching out. It’s gonna be a long process but I have to keep going. 

Have courage and be kind.

Family · Health · Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

I am so proud of you!

It’s been two weeks and one day since my suicide attempt. I’m still on that high but I have had a couple of lows. My husband helped talk me through them and I’m utilizing my tribe. I have the suicide hotline phone number ready to go on my phone, and Alexa will call them for me as well. People think it’s easy to just, get over things. For some it is, but for some of us it’s not. All we can do is live day by day. I am actually living minute by minute right now. I have been known to self deprecate and that is something I’m trying to stop. I am an awesome person, a great mom and wife, and a fierce friend. I am very proud of myself right now for holding it together when I’m ready to fall apart. I am really hoping for better days. I am hoping to get out of this bed at some point. I just have to let go of my past and who I was and learn to love the person I’m becoming. It’s a process and a pretty hard road, but I’m going to keep going forward.



Have courage and be kind.