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I’m sorry, but there’s nothing for you…

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.

Have courage… And be kind

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It’s not just MS!!

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.

Have courage and be kind!

 

Craziness · Darkness · Depression · Fear · hope · multiple sclerosis · Pain · primary progressive MS · Ramblings · RANDOM · Wheelchair

It’s been a while…

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.

As always, have courage and be kind! 🖤

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Too Disabled…

Well those are not the words that were used, but that’s exactly what was meant. I’m too disabled for the DMD’s. That unfortunately in my current situation I am more susceptible to the side effects. Because of my bedridden status my body is at higher-risk of infection. With my constant bladder infections it could easily lead to sepsis. Because of the cancer that runs in my family I’m more apt to the cancer side effect of Ocrevus. And, in a nutshell, it’s not really meant for the primary progressive form of multiple sclerosis. I hate being right. I knew that the big hype that this was the first medication for the progressive forms would not mean primary progressive. If I want to be on the medication they will classify me as secondary progressive… and that’s not happening. I’m numb right now and I’m trying to come to terms with this. I’m angry too. There are people out there going med free thinking that they’re beating the monster that is MS. In the background MS is still progressing and doing its MS thing. I’m scared for them because when the relapse hits, and it will hit, it will be too late for them. They are blessed to be able to be on one of the many medications out there now, and they’re not doing it. I understand it’s a personal choice, I get that. But MS is not stopping because they’re eating right and exercising. That’s not going to slow or stop the progression. That’s not opinion, that is fact! I’m angry because I want to be on one of the medications and I am not able to take one. And for me the side effects aren’t nearly as awful as the MS. I’ve had to be med free, I’ve done the good healthy eating, I do the exercise as much as I can, and I still progressed to being bedridden. I’ll trade anyone of you people to be on those medications. Do you want to trade your MS for mine? Yeah I didn’t think so.

Before anyone says get a second opinion, this is the second neurologist opinion. He did say to keep doing what I’m doing regarding exercise and eating properly. But he also explained that I shouldn’t get my hopes up because I probably will not get back the use of my legs to transfer etc.. The good thing is with exercising I’m getting what’s called muscle memory. That’s pretty awesome because it’s much better than atrophy. But it really is kind of a second gut punch to me. I know in my intelligent brain that I can’t really get back everything I’ve lost, but in my hopeful mind I wanted to believe I could. So I will keep exercising the best I can and continue on. I have to, there is no other option. I will not fall back into my negative mind. I will keep my new positive outlook going and fight through this as I have fought through everything for the last two decades.

The main thing I have to do now is to let go of the what ifs. What if I had gotten into a physical therapy straightaway when I fell November 2013?  What if my doctors had been more proactive with me? I can’t go back and change any of it and I need to let it go. I need to move on from here and continue doing what I’m doing.

On in a bit of a positive note I did finally get my x-rays done. That fiasco is for another blog. LOL I’m hopeful this will give them some more information in combating my pain. Right now that’s my focus. If we can figure out what’s causing my pain and get it under control I may be able to be in my wheelchair more. So that will be my next journey, the journey for pain relief.

If you’re able, go out and seize the day, because you never know what tomorrow will bring.

Have courage and be kind…

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Fighting through…

I’ve been trying to figure out a way how to approach leaving the rehab facility and continuing on at home. Sad to say, the ball was dropped once I left. I truly feel like I was just a body to fill a bed. Since being home, (March 23) I’ve had exactly four in-home physical therapy sessions. I’ve seen the pain management/rehab doctor twice and was told I would have more rehab appointments. No one has called to set those up, and when I call, I never get a return call.  So I am taking the bull by the horns, so to speak, by bustin’ my own ass at home. I wear my Velcro arm weights and do arm exercises daily. I’m doing my best to strengthen my core. And when my husband feels like it, he helps move my legs around for me.

Right now I’m dealing with another wonderful bacterial infection in my bladder and kidneys. Because of the bowel section they used to build my urostomy there’s always a little bacteria that ends up in my bladder. I’m not gonna lie, I think it’s stupid AF that they use part of the bowel knowing it has bacteria and can cause problems. I’m not sure why they didn’t choose another way to build the urostomy. hmmmm I was told by having the urostomy done it would stop my infections etc. Well slap me silly and call me stupid, but it’s made it worse. I have to take a daily antibiotic, Nitrofurantoin, twice daily every day for the rest of my life. Last year I had bladder stones and kidney stones which were all surgically removed. When my urologist went through my stoma with a camera it was like looking at rocky beach inside my bladder. She said she’d never seen so many bladder stones. The removal of those wasn’t that hard. A tube was inserted through the stoma and they were vacuumed out. The kidney stones were a whole nother story. I went in for an outpatient procedure to place the tube into my left kidney which would stay there for five days and then they would vacuum those out. I ended up staying in the hospital for five days. Then when they went in to take out the kidney stones, they could not remove all of them so the tube had to stay in my back for another five days. Unfortunately it caused me a lot of problems and constantly leaked, so for the five days I had to be put into a nursing Center. When I finally had the procedure to remove the kidney stones, all was well. But alas, I have more bladder stones and kidney stones yet again. So what, do I have to have surgery every year to remove these? I feel like I get two steps forward and I’m thrown four or 10 steps back.

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I know my newest bacterial infection is due, yet again, to the wonderful piece of bowel in my urostomy. Then of course, since things don’t always go as planned, Walgreens where I get my prescriptions fucked up. LOL my prescription for Augmentin was called in on Friday. On Monday I called Walgreens as it seemed to be taking quite some time. They said they were out of stock and would be getting it in the next day on the shipment. So I called the next day and was told they weren’t getting any at all. That my doctor wanted the name brand and they do not carry the name brand. They said they would call my doctor and see if I can use the generic! Okay… why the fuck didn’t they do that in the first place and call me. Meanwhile I’m feeling awful! I went to the doctor because I knew my fatigue and sheer feeling like I was dying was not due to my MS. Not everything is MS!! So I kind of needed this medication right away. I was curious as to why no one called to let me know this. And of course dead air on the other end of the phone. To make a long story short, I finally had enough and yesterday, Wednesday, I called Rite Aid and they called Walgreens and within an hour I had my medication. We have used Walgreens for forever, but since the main pharmacist left a little over a year ago the service has been crap. So now, buh-bye Walgreens!

I will say that my new outlook, trying to keep the positivity floating, helped me through the situation. I didn’t lose my shit, too much. I just chalked it up as another little bump in the road that I would get through. I really believe it helped me to not feel worse by causing me added amount of stress. I will always find a way to make it through the rain. We must remain strong in times of trouble. We must have courage to keep fighting! Those are the markings of the true warrior!

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Always remember to have courage and be kind!

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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.

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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!