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X-ray fun and crazy results

 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.

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Some days…

Seriously, some days I wonder why the hell I even bother waking up. No, I don’t mean the alternative. It just gets harder and harder it seems, to be trapped in this bed. Three months ago I was at the point where I didn’t care anymore. I kept my self medicated so I didn’t have to think about being in this prison. But then, I got help. My mind set changed and I saw that there was some hope left.  In a perfect world I would’ve been able to remain there until I could actually get up on my own. And no, I don’t mean up being a dancing fool, just able to transfer myself from my bed to my wheelchair.  In this world, insurance would have none of that. 😳

So I’ve been lying here for the last two days, angry and a little bit lost. It seems that since I had a glimpse of what might happen, I am not handling being trapped very well anymore. Hell, without the help I need, nothing is going to change. I feel like I’m fooling myself in a sense when I say that I can do this on my own. I want to keep that positive facade going so everyone thinks everything’s great… but it’s not. And no, I’m not giving up, but I am looking for alternatives. 🤔

I’ve been mindlessly watching movies for the last two days. Anything to keep my mind off of everything that I cannot do anymore. As I’m watching I constantly wiggle my butt 😏 move my arms 💪🏻 and try and strengthen myself. But in all honesty, that’s not going to change very much for me.  Right now while I’m talk typing, I’m wiggling my hips back-and-forth. Just keep moving is my new motto, and moving is what I will keep doing as much as I can. If only my dogs 🐶 had opposable thumbs and could understand me and be able to talk  and be strong enough to lift me up, everything would be aces. 😂  It could happen.

Okay, back to the real world. I think the worst part for me is that in my mind I can see myself moving my legs enough to be able to get transferred to my wheelchair. I can’t explain it properly. Sometimes as I’m lying here I can almost feel my body move on its own. I know that sounds like some crazy  psychotic shit. LOL  I wish I had the proper words for it. But I am literally drawing a blank. It’s like I can see myself outside of myself. Okay, now I’m  really going in to the realms of crazy psycho woman. 🤣  And I think I just said back to the real world. Welcome to my mind. 😳

I am now going to bid you farewell for the night.  You can thank me later. 💋

Have courage and be kind 🖤

 

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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!

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The Strength Inside – part IV

I had entered the hospital on February 16 and by now, with my best recollection, it is February 22. I had agreed to go to the rehabilitation Center at Palmdale regional. Or at least that’s what I thought. Again, I was heavily medicated with morphine and being in the hospital I wasn’t sleeping the best. I was just about to fall asleep when two very, umm, loud women came in my room.

Hurting my ears

The one woman mentioned that she was from a rehabilitation center in San Bernardino which was an hour plus away from my home. She and the other woman, the hospital case manager, both explained how ‘their’ rehab center had been in business for 22 years (maybe 24) and they were the best. Now in my morphine haze, I thought they were actually talking about Dr. Nasser’s rehab center. If I had been in my right mind I would’ve realized that his (Dr. Nasser’s) center was not an hour plus away from my home. But these women were so forceful in their ‘sales pitch’, that I just sat there nodding my head saying yes. Somehow they had heard about my interest in going to a rehab center, and ended up in my room pushing their place on me. I was a little taken aback because the case manager from the hospital was with this person. In my mind, this was a conflict of interest. [ya think] I felt as if these women were tag teaming me. 😂 I don’t remember much more except, I think, I agreed to go to their place. When they left I was very anxious and in tears.

As I was falling asleep, a man entered the room. Instantly I felt calm. He was good looking, he was dressed nicely, had very nicely trimmed and well-kept beard going on, and he was Zen like. He told me his name was Scott and that he was from the rehab center at Palmdale. So now my mind was going in all different directions. I explained about the two women that had shown up in my room and how they told me theirs was the best rehab center around. He smiled and told me that they are a well-established rehabilitation center. He explained that the rehab center at Palmdale was fairly new, only a tad over one-year-old. I knew immediately I was going to go with Palmdale. Not just because it was only five minutes from my home, but because this guy made me feel calm. His voice was even, he had a pleasant laugh, and he was not throwing me a sales pitch. I know I was high on the morphine, but he also made me feel high just talking to him. I told him my mind was made up and that I wanted to go to ‘his’ place. We talked a few more minutes and then he left. I was so calm by then I just remember falling asleep for a good four hours.

When I woke up, that evil little voice inside my head was making me very nervous. Telling me I wasn’t strong enough, that the pain would be too much, that I can’t forget I have primary progressive MS. As usual, I started to weep. And yes, ugly cry. And yes, snot running down my face. But then, as if a fire was lit inside of me, I dried my eyes wiped my nose and said to myself, “I CAN do this! I know it will be hard, but I know I have the strength and the courage to do it. My life and my families lives depend on this. I’ve got this!”

The next step…Life!

Love and Light

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Too much of nothing

I started this blog with the hopes of chronicling my MS and my thoughts, etc.. Im realizing that with Primary Progressive MS, there is not much to chronicle. There are no more medications for me to try; hell there are no medications for PPMS. Wait, I’m lying. There is ONE possibly coming to a drug store near you, winter of 2017. But, not for me. Yes, it will be the first medication for PPMS, but I don’t qualify. My EDSS score is too high. I’m between 8 and 8.5. In other words, I’m too far gone! Well okay then.

I sit/lie here 90% of the time. I’m not even sure where I’m going with this entry. I’m not even sure why I’m even blogging it. Maybe out of boredom. I guess this is my personal diary that I just happen to share. A place for me to come back to and ‘remember’, the good and the bad. A place for me to vent. A place where I can say whatever the fuck I want.

I just wish I knew how to get my thoughts out of my head and onto here. A jumbled crazy ass rollercoaster is the only way to explain my thoughts.

“Outlook is grim”, has been the description of two doctors regarding my life now. Well no shit… But, did you have to say it out loud!! RUDE much. 😛 And, I know I know, anyone can die at anytime. They could walk out of their house and get hit by car. I get that. That would be easy. We start dying the minute we’re born if you want to get technical. Picture yourself  lying in bed 24/7 while your body slowly but surely dies daily from illness. It’s not for the weak. With PPMS, there is NO cure, NO remission, NO parole. So, the next time you want to use the ole. “well anyone can die just from blah blah blah”…don’t!! Above all… DO NOT compare one illness to another, especially if you, yourself, do not have said disease. You will never ‘get it’ unless you ‘get it’!

Scary part is that sometimes I really believe I’m going a bit mad. Seems par for the course…

madhere

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Unleash the flying monkeys…

Just when things seem to be getting better, BAM, it hits the fan. This why I can not ever be the shiny happy positive person others want me to be. And I try, but fuck a lot of that!

Unleash the flying monkeys!!

I’ve left 2 messages for my primary care doctors office manager. My doctor turned a specific issue I’m having over to her. We spoke when I was at my doctor a few weeks ago and she was supposed to get back to me. Nothing, nada, nil. I’ve called twice and left detailed messages for her to please call me back. And, I used my nice phone voice. Nothing, nada, nil. The issue is quite a big deal for me. What has happened in the last 30 years when it comes to doing what you say in the workplace. FUCK!!

Unleash the flying monkeys!!

Now, to get my pain meds, you always need a scrip every month, no refills… all thanks to the wonderful druggies out there that abused the medication, and the doctors dumb enough to believe them. Normally I go pick up the scrip at the office with a quick check in every month. So, I called yesterday to see when I can pick it up, and they said they’d talk to my doc and call me back. Bahahaha, you guessed it, no call back. I’ve been going to my neuro for 19 years. WTF. So I called back and they said my doc will be calling me back. I have a real illness that causes real pain. To bad I can’t fake it, maybe then I’d get the medication I need. FUCK!!

Unleash the flying monkeys!!

Why, just why… Come on Universe, cut me a fucking break. I have an aggressive form of primary progressive MS. NO treatments available to me. I’m bedridden with double stomas, degenerative disc, muscle spasms, tremors, constant numbness,  and unable to do basic things like roll over in my bed or even sit up. I deal with severe anxiety and depression, complete and utter loneliness. What fucking more do you want from me? Sometimes death sounds very inviting.

Unleash the flying monkeys!!

But, fuck you, I’m not a quitter. And now I’m just pissed off. Do not mistake my disability for weakness. My mind still works and is smarter than you. Look out, here I come!!

Too late!! mwahahaha
Too late!! mwahahaha