If only we knew when the darkness would end… Have courage and be kind
If only we knew when the darkness would end… Have courage and be kind
I try to live my life minute by minute because anything else is overwhelming. I know that every living person wonders about their future and what it will bring. Unfortunately when you live with chronic illness that wonder many times turns into fear. Every night I go to bed knowing that when I wake in the morning nothing will be different and it may possibly be worse. 😢 I will still be trapped in this bed, I will still have pain, and I will still have sorrow. But, I will still wake up and try to get through my day as best as I can.
I am human and I can’t stop thinking about what may happen. Statistically I know exactly what it’s going to happen to me. I have an aggressive form of primary progressive MS and it isn’t going to get better. I have now been bedridden for four years and eight months and it doesn’t look like it’s going to change anytime soon. Unfortunately, for me, rehab aggravated my back fracture that I never knew I had. With that has come so many problems. Whenever my hips are put into the proper aligned position the pain that comes with that seriously makes me not want to move at all or even try to make it through the day. The pain has been going on for a few months now and it is taking over my life. The pain in my lower back is also excruciating to the point where I can’t even sit up straight for a period of time without becoming nauseous. We discussed a facet block but I’m not sure even that will help with my lower hip pain. My husband needs a facet block but unfortunately our crappy insurance has denied it. Even though he’s had them before. So now we must fight the appeals process. I cannot do mine until he gets his done, so I think we’re both shit out of luck.
Again, I know everyone’s future is unsure. Hell the minute we are born we start to die. But most people can look ahead in their future talk about wonderful vacations they may be going on family get together’s etc. I cannot do that because at any given time I may not feel well enough to do anything. Unless they can figure out something with my pain I really have no life to speak of. All my future has in it is this bed in this room surrounded by these four walls. When you’ve been bedridden for as long as I have been you can’t just get up get into a wheelchair and go about your day.
It’s an adventure trying to out to get me dressed, in the Hoyer lift, and then into my wheelchair. After that I’m already down for the count. Just doing that pretty much takes away all my spoons for the day. 🥄🥄. And the pain comes with doing that is like Michelle Pfeiffer in the movie witches of Eastwick. 😳 It’s hitting me hard today because I had a shower Saturday night, two fucking nights ago and it completely wiped me out. The pain was worse than it’s ever been and the nausea was off the charts. So I’m trying to find something and some reason to keep holding on. How do you come to terms with the fact that your future may include you being always trapped in a body that doesn’t work and left in a bed? Lately when I watch movies all I can do is cry. I cried for what might’ve been and what should have been. I also try very hard to understand and live with my new ‘normal’. I’m not trying to get pity or be a Debbie downer, but sometimes this shit just really gets to me. I don’t understand what the fuck I did to deserve such an aggressive form of this disgusting disease. When I was diagnosed I had three babies under three and my life was torn apart.
I’m just so tired. Even Warriors fall apart at times. I’m just not sure how to put myself back together this time. It was just a fucking shower and my whole body feels like it just wants to curl up and die. And the doctors don’t listen. They don’t seem to care about my back fracture, they act like it’s not a big deal. It’s almost as if they feel like, hey she has multiple sclerosis she’s bedridden there’s nothing to do. The way the pain is affecting my life I may just have to do their morphine drops under the tongue. Sadly cannabis isn’t even helping me now. So what, they’re just gonna throw morphine under my tongue and leave me to die in a bed. The worst part is if I wasn’t stricken with multiple sclerosis they would be able to fix my knees, fix my hips, fix my back. But because of my disease it’s not worth it to anyone. Regarding the back fracture, my God, maybe that’s the reason my legs completely stopped working in November 2013. Maybe it wasn’t the MS. But they have no answers for me about that. They basically just said possibly but there’s never any way to tell. So now I am stuck wondering and really wondering what am I gonna do for my future. Have no worries, I will get through this and I will continue to fight. Hell, I’m a fucking MS Warrior! 🖤
Have courage and be kind
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!
One day at a time. More like one minute at a time for me. I really need to believe this and follow it. As of late I’m finding myself wondering about my future with this MonSter of a disease. I need to stop torturing myself. All I can see in my future is nothing but this bed and this room. I don’t mean to be a Debbie downer, it’s just what’s been going through my head lately. I know the odds for people with aggressive forms of primary progressive MS. I try so hard not to dwell on what might be, but it’s very hard sometimes. I watched a documentary of Annette Funicello and my heart was broken. I know that she would not have wanted to be remembered that way. I could be way off base and maybe she wanted people to see her like that, but there was nothing in her eyes anymore and I wept for her. I am well aware that this disease is the snowflake disease and no two people are alike, but it’s still hard to watch someone’s struggle with a disease just like yours. Just like I tell people not to google their symptoms, I probably shouldn’t watch movies or documentaries about people like me. 😉 Again, I need to follow my own advice.
I’m just so over this MS thing! I just want to give it back and get a refund. 😊 It’s like, I’ve tried it I don’t like it, please take it back. In a perfect world…
That is all, for now.
Have courage and be kind! ♥️
I miss the good old days when I could just walk in jump up on the x-ray table lie back and let them rip. The x-ray machine that is. When I called to make my appointment for x-rays I explained I needed a lift as I am unable to transfer on my own. They told me they don’t have a lift and they’re not required to have a lift. I explained that the ADA says any medical building/facility should have ADA compliant equipment. Not according to them at Renaissance imaging Center. They said they could get four guys to lift me out of my chair and onto the table. 😳 Are you kidding me? Not only is it dangerous for the patient, me, but it’s dangerous for the people lifting me as well. I wonder how many people have been dropped or how many of the medical personnel have hurt themselves dead lifting a patient. Realizing they weren’t going to help me, they explained I would need to go to the hospital for my x-rays because they have a Hoyer lift. So after my doctors appointment on Monday we went to the antelope Valley Hospital to have my x-rays done. Easy Peasy right? Not so much.
When I got to the radiology department I explained I would need a lift for x-rays. She said they didn’t have one and got me her supervisor. He comes out and says, “aren’t you able to stand up and transfer to the table?” I calmly explained to him that I would love to be able to stand up and get on the table but unfortunately I can’t. He got a little nervous and apologized. Then he proceeds to tell me only inpatient clients can use the Hoyer lift. WTF!! So basically because I’m disabled I can’t get the same care as someone who is not. So again I explained about ADA compliant hospitals and rolled away. Within five minutes into our drive home I got a phone call telling me that they could use the Hoyer lift. Well no shit Sherlock! I figured they would fix their fuck up. 😏 We turned the van around and went directly back to the hospital.
Once we got back, the tech came with the Hoyer lift and we went into the x-ray room. My wheelchair can recline in to a bed position, so I asked if we could possibly do them in my chair. Renaissance imaging had told me no, but now these guys said yes they could. I proceeded to recline my chair to an almost flat position and she hooked me up to the Hoyer lift. So all she needed to do was lift me few inches so he could slide the film underneath my back. Easy enough. For those of us that have had a child, think contraction. 😮 That was the pain I was in when I was lifted. I let out a silent scream and had tears streaming down my face. The poor girl working the Hoyer lift and the x-ray tech felt awful and I explained to them, it’s not you it’s just my back. 😥 I let them know that what we were doing was going to help find out why am in so much pain, so it’s a good thing. And thankfully after being lifted three times, he got great x-rays and just like that, it was over.
Yesterday, Thursday, I had my pain management doctor appointment to discuss the x-rays. The doctor walked in and the following dialogue ensued:
Doctor: well aside from your fracture at L1 everything else looks pretty good.
Me: my fracture what, where? What? 😲
Doctor: you didn’t know your back has/had a fracture?
Me: um, no 😢
So now I’m getting an MRI. It has to be done to the hospital because of the pain it causes me so that they can sedate me for it. The minute he mentioned an MRI I started crying because I know how bad it’s going to hurt. (refer to x-ray appointment above) So that’s why they’re choosing the outpatient route.
We are thinking it may have happened when I fell in November 2013 and everyone assumed it was the MS that stopped my legs from working. But we don’t know yet. The MRI will give us more of a timeline of the break. I’m trying to pinpoint any time in the last five years that could’ve caused trauma to my back. 🤔
And while physical therapy was awesome for me the reason the pain has been so intense since then is because it aggravated my already fractured back. In my humble opinion. 😳 Ya think!? So I’m kind of in a daze right now and trying not to overthink anything because it’s making me crazy. I just have to be patient and hope the MRI will give me a clear picture of what’s going on in my back.
But honestly, it’s all good. I’ve got this! ♥️
** for those that had to read some of this already on Facebook, I’m sorry. 😘
Have courage and be kind.