A day in the life of a mommy, wife, daughter, sister, aunt and friend with Primary Progressive Multiple Sclerosis! I'm a 54 year young mom of 3. Married to an awesome man for over 20 years. I love creating things; graphics, jewelry. My family and my friends are my life. I try to be positive...it can be very hard some days, but in the end it is worth it. Blessings!
What do you do when there is nothing for your type of illness? Yes there is a medication now for primary progressive, Ocrevus, but is it really for us. Most of the studies I see have been done on people with relapsing remitting or secondary progressive. They already had medications. LOL what do you do when there’s nothing for you? It’s too dangerous for me to take any of the DMD medications. So how do you live your life knowing nothing, and let’s face it, no one can help you. How do you fight when there are no tools to help you fight? The only way to slow or stop the progression of multiple sclerosis, any type, is to be on one of the disease modifying drugs. So, please, tell me how do I fight? There are people out there that won’t take those medications because they feel the side effects are too dangerous. I would give my right arm to be on one because I can tell you MS will fuck you up a lot more than any of the side effects from the medications. MS is always working in the background and I don’t care how great your diet is or that you exercise 24 hours a day, 😂 that will not slow or stop the progression of multiple sclerosis! So if you are not on one of those medications, I’m so sorry, but you are a special kind of stupid!
I really don’t mean to sound like a bitch, but I have nothing to help me and it angers me. How do you go on with your life knowing that you can do absolutely nothing to help yourself. Yes I can watch what I eat and shimmey in my bed to keep movement going but that’s not slowing or stopping my progression. I am so fucking angry. I hate the fucking holidays because I cannot physically do anything for anybody not even myself. I don’t know if people really grasp the concept of being bedridden. Someone told me they were bedridden but that they could get in their wheelchair and cruise around whenever they needed to, that they could still transfer and things on their own. 🤯 UMMM then you’re not fucking bedridden if you can get up all by yourself and get in n out of your wheelchair on your own. What the actual fuck! I’m so glad I wasn’t near that person because I would’ve seriously opened up a can of whoop ass on them. LMAO when you’re bedridden you can’t get up out of your bed whenever you feel like it. Then you wouldn’t be bedridden! DUH I cannot even sit up on my own. I can’t even roll over on my own. I am stuck lying on my back for however long I stay in this universe. It’s a whole production getting me dressed and out of my bed and that is probably why I don’t do it very often. And it’s very painful… so there you have it.
Yes I’m angry!!
And every now and then you hear of a new celebrity just diagnosed with multiple sclerosis and they make it sound like they are some sort of martyr. For any chronic illness money talks. Granted it sucks that they are also struggling with this illness but they are able to get the resources that the majority of us sorely need but cannot afford. I would love to have someone at my home helping me every day. Then I could get out of my bed and I could maybe maybe one day get better. I don’t mean get rid of the MS but physically get stronger and mentally having someone to help me could change my life. But unfortunately the majority of us cannot afford Caregivers nor can we afford to handicap accessorize our homes. So while I feel sad for the celebrity, I would trade places with them in a heartbeat. I don’t even know where I’m going with this blog today. I can just feel that I’m not in a good place so I just needed to get shit out. As always I’ll be OK but sometimes I wonder how I’m going to be OK.
If anyone ever tells you, be glad it’s just MS!! Punch them square in the jaw, to hopefully have the end result be that teeth fall out. Then they will remember never to say that to anyone ever again.
I’m really trying to stay positive, but when every day is the same with change nowhere in sight, it can be hard.
I’ll get over this feeling in a little while and I will get back to my positive outlook. But today I’m allowed to feel this way and be angry.
And no, I’m not glad it was just multiple sclerosis. So next time think before you fucking speak. This is not going out to any one person in general, it’s just something I see all over the Internet when people are ignorant. So now I am going to watch Fast Times at Ridgemont high, laugh at how stupid it is and funny, and find my positive place again.
I hope everyone has a very safe and Happy All Hallows’ Eve!!
As for me, my back is killing me so I am going to sit in the dark in my room and watch scary movies. One of my favorite things to do. 👻
I’m a little bummed that I’m not able to put on make up or do anything this Halloween, but there will be others. Thankfully Snapchat has given me a few ways to do some make up. LMAO
Did I mention I love Halloween!
Be safe tonight and be mindful of others around you. And if teenagers show up at your door, give them candy! It’s much better that they’re doing something safe and fun then being out doing something not so safe and possibly getting into trouble. Childhood leaves us much too soon so let them be children for as long as possible. 🖤
And, if you have a black kitty keep them inside tonight. Humans can be very evil and black cats are targeted on Halloween. I think we all know that humans are the only monsters in this world.
Last but not least, an update on my MRI… They are working to get it done via outpatient so that I can be sedated to help with my pain during the MRI. I decided there’s no reason for me to be in that much pain to get a test so they need to work and help me. We have to be our own advocate and we need to speak up if something is not right for us. So that’s what I did!
I know it’s been a while. A lot of crazy shit has gone on. A lot of good but then some bad as well. 😳 Welcome to my world. 😈mwahahaha
So when I went to my doctor he thinks there may be an issue in my lower back. There is a possible fracture so he is wanting an MRI to see if there’s issues with my bones etc. I forgot to get the order on Friday so they are faxing it to my husband‘s work. My issue is no one is set up properly to give me an MRI. I need a Hoyer lift and unfortunately the ones they have at the hospital do not work very well with my sling. So I may have to bring my lift. And because of the metal they will have to find a way to get me on a gurney to bring me into the MRI to get me on the table. The last time I did the x-rays it was completely horrible. The pain was off the charts and that’s actually when they found my fracture at L1. 😳 So I’m not looking forward to the MRI. I’m actually scared to death. I’m really tired of all of us. I don’t usually break down but this is fucking awful.
If my back literally just keeps getting fractures I’m fucking done. I am so fucking tired. I had a blast the past few weeks and I really thought things were getting better and then, Bam this happens. I’ve been working so fucking hard to get out of this bad that I’ve been trapped in for five years and it just seems like the universe is against me. 😢
‼️‼️OKAY… I got it out and now I’m going to pull up my big girl panties and say to hell with all of this I’m going to kick some ass and find out what the fucks going on. I’m not sure if the universe knows who they’re dealing with… they must not know who I am. 😉
Sending out all kinds of love and hugs! ♥️😘 — ￼feeling a bit overwhelmed and a bit pissed off… So watch out universe.
Lately I’ve been realizing that I was always one of those people that worried about what other people thought. I know most of you probably don’t think that, but that’s exactly how I was. I hid it very well with my “tough“ persona, but I always wanted to please people. My time in physical therapy rehab changed me completely. I’m now the person that I always wanted to be and if people can’t handle me, then I don’t need them in my life. I’m going to be that tough girl who fights and doesn’t let people walk over her anymore! I used to go out of my way to do things for people that never really cared. And I don’t expect a pat on the back of or even a thank you. But you know those people I’m talking about. The ones who we just have to be friends with when in reality they are no better than us. But for some reason we always thought they were, so we would go out of our way to get them to be friends with us.
I just never thought I was good enough. I thought to make friends I had to buy things, always be the ride, always be the brunt of jokes. I allowed it so it’s my problem and not theirs, but I will NOT allow it anymore. To be friends with me you have to take the good with the bad, and all of the crazy. I’m not going to change anymore for anyone! It’s nuts how it took me nearly 54 years to figure all of this out. Better late than never comes to mind. ☺️
I lie here at night, and when I can’t sleep I just have so many thoughts that go through my head. I just don’t know how to put it down on paper. So I talk text and say what I feel. Half the time I can’t remember my thoughts from the night before. I’ll just blame MS cog fog. LOL I mean if you have to have a disease then by all rights use it as a great blame tool. It’s those voices in my head that don’t let me quit. It’s those voices in my head that make me strong. It’s that little inner child that comes up to the surface when I need her.
I just thought I would share a little bit of what makes me smile every day. My children with paws 🐾
Clockwise from top left: Soloh, Charlie (girl), Gatsby, Zoe (kitty), and Dexter Morgan.
All rescues, as in my mind, rescue IS the only breed!
This handsome bearded dragon was Stewie. He is and will always be the only bearded dragon I will ever love. 😉 He was awesome!
Animals are forever! They love you unconditionally and they should always be treated like family. I am against breeding as I believe until they all have a home it should be stopped. There really is no need for designer dogs. So please, adopt, Don’t shop! I know breeding will never stop completely but until we can clear out the shelters and stop the murder of so many healthy beautiful animals we need to rethink breeding for the time being. And, FYI, you can find many purebreds in the shelters and breed-specific rescue’s. So there really is no reason to go to a breeder. I will now step down off my soapbox. 😂🤣