family · friendship · hope · love · multiple sclerosis · primary progressive MS · Ramblings · strength

There are signs everywhere

When I feel like I can’t go on and I’m at my worst, things happen that pick me back up from the depths of my own hell.

On June 18, 2017 I joined an MS support group on Facebook. After a few months I was asked to be a part of the amazing administration team. 🤗 If not for this group I don’t think I would be holding on to hope or to life. I have met the most amazing MS warriors on the planet in this group which is now over 10,300 members strong.

Today wasn’t starting out to be very good. #Understatement 😉  When I came online I was greeted with wonderful comments to a post on Facebook by some amazing people that I met through the group. Another beautiful warrior messaged me regarding a gift she is sending me. ♥️ And then when I went in to the group, another amazing warrior sister posted a few memes and one of them resonated with me directly to my soul. I felt the need to come here and blog. I really can’t stress enough how this group and all of the amazing MS warrior brothers and sisters help me through every day! Now there are some days where I wish I could jump through the computer screen and junk punch a few of them 😂  But overall 99% of the members are absolutely wonderful. The group makes me feel like I am home.

And now without any further ado the meme…

Now if only I could have her hair. ☺️

Have courage and be kind!

anger · boredom · confession · Darkness · Depression · Faith · family · Fear · health · healthcare · hope · lonliness · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · sadness · strength

Bedridden…

bedridden

[bed-rid-n]
1. confined to bed because of illness, injury,etc.
——————————
 I’m not sure what’s going on right now. I am starting to have a hard time being confined to my prison that is my body. It’s now been four years and eight months that I have been in this bed 95% of the time. I think I’m going a little mad. 😳 More  so than normal. 😉 There are so many things that need to be done in my home and it’s making me crazy that I can’t do any of it. And with this finding of my fracture of my back at L1 my mind can’t stop thinking.  Is that fracture what caused my legs to completely stop working or is it the MS? The doctors say there’s no way to tell. Will that fracture make it so I’ll never be able to stand or transfer again? That’s a question I completely forgot to ask at my last pain management doctor appointment. I could just hit myself for forgetting to ask that question. But when I’m there I am so confused and I don’t feel like they even care about it. I mean why should they, right?!
 Is it completely futile to keep trying to move? I woke up this morning when my alarm went off and slept right through it. My thoughts were, what’s the point?  I might as well just sleep because I can’t do anything else.  Around noon I woke up, raised my bed, and my son brought me coffee. I did a few things around Facebook and then came in here to write this blog. I don’t even know what I’m trying to say. I have so many ideas in my head of things I wanna do to help my family. But then reality hits and I can’t really do much to help anyone. I can’t even help myself. I don’t mean that in a pity way. I literally cannot do things for myself. When I talk bedridden that’s exactly what I mean.  Maybe bedbound would be better because I am bound to my bed. 🤔
 I think the part that makes me crazy is that I know what needs to get done in my home and there’s no way to get it done. My kids work, my husband works 50 hours a week and has a three Hour round-trip drive – sometimes more depending on traffic. We can’t afford someone to come in and clean and help me, so WTF! 😥  Even on the rare occasion that I get up in my wheelchair to go to a doctors appointment, I can’t do anything around the house because the pain is so paralyzing.
 The one thing I cannot stress enough people, is if you have the chance to do something and you are able, do it! Don’t wait.  I guarantee if you do you have regret for the rest of your life.
  I know, I’m kind of all over the place with this blog because, as I stated above, I’m not sure what I’m even trying to say. I’m working so hard about keeping a positive attitude.  There are days when it’s very hard to do so. I know that right now I’m just having a  few bad days and it’s not a bad life.  Right?
 I’m trying, I really am!  I’m just waiting for the universe to cut us a break. We need help and I’m not sure how to get that help. I’ve always taking care of things even from this bed and now I feel pretty hopeless and helpless. But, I truly am a warrior, and I will fight and I will find a way for my family if it’s the last thing I do! And the reason why, is because I’m the mommy!! 🖤
 Have courage and be kind!
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Positively unsure…

I’m positive that I’m unsure about everything right now. Day in and day out I lie in this bed and wonder if things are really going to change. When I say being positive is new to me, it’s a true story. I never realized that it’s very hard to keep a positive attitude. And when your life takes a turn like mine took two decades ago, it’s fucking hard. When I found help on February 23, I believed my life was going to change for the better. I’m still hopeful, but it’s much harder than I thought it would be. While I can move my legs and feet a little bit, I still am unable roll on to my side. I cannot sit up without something supporting my back. As I sit/lie here all I have this time. I’m looking at this blank page before me with tears in my eyes not even sure what to say. I miss the girl I was. I’m so angry at everything and everyone and at nothing and no one. Half the time I don’t even know what I’m saying or thinking anymore. I’m alone and I’m lonely but I don’t want anybody around me.

Most days I just want to scream at the top of my lungs for no apparent reason. The highlight of my day is watching the hummingbirds drinking the glorious nectar that keeps them going. Sugar water, go figure. I can stare at them and keep staring praying that they won’t fly away too quickly…

Is it so wrong two want to escape from this prison that is my body? I don’t want to sound negative or sad but nothing really is changing. We can’t afford a caregiver and I can expect my family to spend every free minute they have aside from what they’re already doing to help me. The whole physical therapy aftercare is a fucking joke. I can only call so many times without a return call. And in reality, if they do call I have no way to get there… So does it really matter. My husband cannot keep taking off as much work as he already does take care of me. My kids work and they shouldn’t have to take care of me. They have done that their whole lives already. And then there’s the pain… the pain that never goes away. The physical and the mental pain Is exhausting. I’m trying so hard to stay strong to keep that positive light flowing.

No one understands that when just sitting like a normal person causes so much pain, it makes a person not want to get out of the bed. The minute my hips go to the proper sitting position the pain latches on and won’t go away. My legs have plopped the side [frog legs] for over four years [11/2013] and when my hips rotate it’s excruciating. Pain meds, muscle relaxants, cannabis, CBD, nothing stops it. I’ve l earned to grit my teeth, quietly let the tears flow, bare it, and warrior on because I have to! I have orders to get ultrasounds on my legs to check for clots, an order to have x-rays of my hips and lower back to check for arthritis aside from my degenerative disc, an order for a mammogram that I’ve put off for the last 2 1/2 three years. Breast cancer took my sister from me I miss her so much…

And I digress. So as I said, I have all of those things I need to get taken care but have no way to get there. I know that my husband will take another day off work to get me to these appointments and that is why I don’t want to make them. It’s also going to suck big hairy donkey balls because of the pain that’s going to happen when trying to get me out of my wheelchair to lie flat for the x-rays. I hope they have some strong men working that day and maybe even a chaser of morphine.

On the outside looking in people probably think I’m lazy. Although I don’t know how I can do much more from my bed. I fought for the last two decades against MS and it didn’t change a thing. I Just kept progressing to where I’m now. But don’t worry, I’m still going to fight and do what I can from this bed to keep going.

I’m going to put my arm weights on every day and do my exercises. I’m going to have my family help me move my legs when they get a free moment. I’m going to keep moving my legs as much as I can even if it is only a little. I know right now I can’t move them very much, but with hard work it can only get better. Or it won’t. But even in the dreary depressed mood I am in at this moment, I will never quit. I will never end up in the hospital again after trying to take my life. [2/2017] I will never end up in the hospital again contemplating taking my life. [2/2018] Because what that month of physical therapy DID give to me was a glimpse in to what might be. I know now I was just a body in bed but while I was there I learned the tools to better myself. I have all the paperwork showing the specific exercises; I know what to do. And even if nothing changes, no one can say I didn’t fight and fight hard! One thing I learned and I’m still learning is there truly is something beautiful in every. I didn’t see that before. That’s how I make it through now. As I’m reading through this I’m not even sure what I’m trying to say. But, I’m in here and I’m saying it and that alone is strength.

Have courage and be kind.

Happiness · health · hope · joy · medical · Pain · Quotes · Ramblings · RANDOM · sarcasm · silly · strength

Positivity…

This whole positive, optimistic thing is really new to me. I grew up in a somewhat negative family. Don’t get me wrong, there was a lot of love, but also negativity. These type of behaviors are learned. When you’re around negative forces it rubs off on your psyche. Now there were happy, positive times for sure, but looking back a lot of negative as well. And it was ‘taught’ in previous generations. It didn’t just start in my family, and it took me 53 years to realize this. The realization came while I was in rehab. The positivity train that that took over during that time made me re-evaluate a lot of of my life.

Again, there were a lot of positive things in my life. Unfortunately, negativity always took over many of the positive aspects. The issue I am running in to now is others in my life aren’t in the same place I am. I’ve also realized that the so called positive people in my life, truly were not all the positive. They preached positivity, but honestly didn’t live it. I have had to rid myself of many toxic things and/or people as of late. And while it is sometimes sad, I am actually okay with it. I finally understand the concept of, you have to take care of yourself first, or you cannot help anyone else.

I have found myself more than once falling back into that angry negative place. When that happens, I pause, take a breath and move on. I just give myself a little space from the negative forces that be. It’s been a very hard journey to get where I am at today. I will not let anyone take away my new outlook. Sadly, I feel like there are a few out there trying to do just that. Like I said, they’re still in that not so good place. I truly hope they can find their way out of it, but either way I will not go back.

d7a51b48621909d116597e862a0721ec

We truly are in charge of our own happiness no matter the hardships in our life. Believe me, it would be very easy for me to just lie down and die. And, I almost did just that. I will not go back there and I will not let anyone steal my happiness. I will not let anyone takeaway my new positive, optimistic, and determined heart. I have worked too hard in the last two months to get to this place. I also will not apologize for it.

Just a small glimpse in to the life that is me. I will get back to the journey that got me here… eventually. I hope those of you following/reading my blog are living your life to it’s fullest potential. We ALL deserve to be happy, no matter the circumstance.

Have Courage and Be Kind

 

anger · confession · Darkness · Depression · family · Fear · FUCK · FUNNY · Happiness · health · health insurance · healthcare · hope · medical · medications · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · sadness · sarcasm · strength · Wheelchair

Being Defeated is NOT an Option!

Yesterday was not one of my better days. I had in-home physical therapy in the morning and then my appointment with Dr. Nasser in the afternoon. I was feeling okay in the morning and after physical therapy. All of a sudden it felt like a Mack truck had run over me. I just started feeling queasy and was having a hard time sitting up. At around 1 PM we started getting me ready for my appointment. I am unable to dress myself so I need to be rolled and moved a lot. The pain was unimaginable. By the time I was dressed, leg braces on, and Hoyer lifted in to my power chair, I was done! I could’ve canceled my appointment, but I knew I needed to go. He deals with my pain management, so I needed to go badly. The drive was excruciating. When we got there it was 83°, and heat is not my friend. The combination of everything started to bring about a little bit of depression. I was angry. I’ve been trying so hard to get better and to feel better… then this hits me. I felt like I was being punished for getting dressed. LOL I know that sounds crazy, but that’s how I was feeling.

Bottom line, I was feeling defeated, I’m not gonna lie!

By the time I got into his office I felt like I was going to be sick. Then I realized that my Hydro flask had leaked water all inside of my purse. It looked like I peed myself. Which, I’ve done before, but this time it wasn’t me. LOL Roger took my purse outside and dumped all the water out. He left to go upstairs this doctors appointment and I went into the room for my doctors appointment. The room was so small and it was so hot in there I thought I was going to pass out. Thankfully Roger’s  appointment finished before my doctor came in the room, so he came in with me. Sometimes I just need my hubby. Sometimes! 😉

My doctor finally came in the room, we exchanged pleasantries, and then took care of business. I got my medications refilled and hopefully four more physical therapy appointments. I explained I was a little perturbed that someone had dropped the ball because it took three weeks before I even got physical therapy started after I left the rehab. But, I have to let that kind of shit go because all it does is upset me. Those of us that deal with chronic illness and doctors know that many times we are not the priority. While my time in rehab was awesome, follow has not been the best. Luckily, I am a little bit of… okay a-lot-a-bit of a bitch, and when I set my mind something… nothing will stop me!

We wanted to go grocery shopping after our doctors appointments, but that wasn’t happening! By the time we got home my pain was so intense I just wanted to get into my bed and hide under the covers. And that is what I did! There were a lot of tears and, again a lot of feelings of defeat. I started second-guessing myself. All I could think was, if doing the little stuff that I did was going to knock me the fuck out like it did, then what’s the point? Is it ever going to be easier? Do I want to keep putting myself through the horrific pain every time I move? The answers are: I’m primary progressive and yes the little things probably will kick my ass, it’s probably not going to get easier, and I do have to put myself through the pain if I want to get better.

I may be down right now, but I will never be out.

Have Courage and Be Kind

** again, I’m sorry for bad grammar, typos, run on sentences. I’m a business major not an English major. LOL PEACE!

boredom · Craziness · hope · joy · love · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · sadness · strength · stupid_stuff · Wheelchair

Sofa King Tired!

Randomness:

I went to the doctor last Thursday. After the doctor we went to Walgreens to pick up my prescriptions and then we went to get something to eat. I’m still exhausted from that day. I’ve had two in home physical therapy appointments and the pain is intense. Nevertheless, I got through them both. On the days where I feel like I just can’t go on, I just want to stop everything. I ask myself why I’m doing this as I know it’s going to hurt. I start to second-guess myself. I truly am my own worst enemy!

So, instead of quitting, I push on. I remember why I’m doing this, and that makes me focus.

Just had a surprise shower after PT day 2. [not my normal shower day] I am back in my bed resting and re-charging for tomorrow!! Peace out … for now!

Have Courage and Be Kind