My First Full Infusion

Infusion Day

     If you click on the link above it'll bring you to a Youtube short video. From the day of my first full infusion. Which surprisingly went faster than I assumed it would. Which was like for hours. with no side effects.

I was very nervous because my first two were 8 hours. Had me feeling like I was punching into their time clock. I'm happy I brought snacks last time. This time I brought something to heat up and they wouldn't allow it. 

I'm just grateful for the process going by smoothly. As well as to not be having to stick myself with my old medication anymore.

Sidenote: I'm sorry it took me this long to get back on here. I've been going through a lot. I am on my other social media outlets a lot You'll probably catch me on those more. The information is located on the right of the regular website. Not the mobile site!Thank you to those that do read my blog. You are appreciated.

Before Multiple Sclerosis Exacerbation

Chronically Ill, Very Healthy | Pat Caslin | TEDxDunLaoghaire

 

Surviving Multiple Sclerosis/I wish I could flip a switch

  I honestly wish I could flip a switch and ask god; to take it away. I wanna go back to work. I want to make my own money. I want to have my own place again. I want stop fighting back and forth with disability.

  I'm just not in a position to do what I used to do for anyone. Which is why this particular blog is so meaningful at the moment. 

 Especially on this particular day World Ms Day!

   I will continue to keep on praying to him. And stop questioning him. Although it may be hard at times. This is just something that came to me and I could no longer hold it in!

                     “Sometimes”

             “I wish I could flip a switch”

Surviving Multiple Sclerosis/Change of Medication

I've recently been told I'd have to change the medication I have been multiple sclerosis. From the needle, I have been giving myself since my diagnosis in 2012 (Rebif). To an infusion(Ocrevus) that I don't know anything about. 

  Except for the brief research that I've done; as well as the information had obtained from groups that have been on in.

 On top of me already going through a few other things that just kind of pushed me to lean on my therapist more, and I felt like I needed to do more. 

 So, kind of pushed away from social media a little bit. Doing a little more watching than anything. 

Please bare with me while I get through this. I’ve gotten my first dose since I’ve started this blog. I just came to update this. I’ll be back with an update on my experience soon. 

Some Doctors Really Don't Listen

 For the past few months, I've been complaining about pain. And I have not been able to see any of my regular doctors. Only after making a complaint was I able to have them get in direct contact with my neurologists.

  And he's a little bit older now. So, I think I may have to start looking into getting a new one. Being that all of the last few appointments he's only been consulting via phone.

 My primary doctor hasn't been in at all. And they've had another doctor stand-in. And I automatically didn't like his vibes. Being that I could tell he hadn't even looked into my files. 

  Offering me some meds without even taking into consideration that I have a therapist. And has offered me psych meds several times. Like, don't you think of have maybe been prescribed them by her if I’d needed them already?

 Then I've been describing my pain to him over time and he's been kind of overlooking it. 

  Now I know I have never allergies to certain things. As a doctor, if he's unsure about what to prescribe me; shouldn't he be trying to refer me to someone else? Instead of telling me he couldn't because my Neurologist had given me something else. but had only given me enough to last to my last appointment.

An appointment that the messed up and had to reschedule. A month out mind you. Only to tell me to make an appointment with him for him to still ignore my issue.

 And then give me a referral to pain management after me emailing them about their incompetence. Which still resulted in me not getting in pain medication.

 At this point, I see why some people's health goes down the drain. And it a very scary site! 

 Have you experienced this? What do you recommend? Do you find doctors by word of mouth or your own research? 

  I really need help with this. Please leave your thoughts in the comment section. And also don't forget to follow me!

I Feel like I take so many Medications

                                I'm Sorry It took me so long to get this out there. 

                              I've just been going through a lot with these relapses.

         Although I'm sure there are people that take way more! I just feel like I take too many.

  

 This was the original thing I wanted to blog about for the past few weeks or so. My body has been having what's considered a relapses they've been preventing me from doing so. And I was giving yet another medication. Which helped at the time. Yet, at right now I'm not so sure being that there's still other issues going on 😢.

  With that being said I don't take as much medications now but I still take enough. Which is why I’m not taking as many now( no vitamins😕).

 Now I take 5 sometimes 6 (if I’m in pain)prescribed medications(pills) and two different prescribed eye drops )in the morning. As well as 2 allergy pills. In the afternoon I take 3 prescribed pills. In the evening I take 5 prescribed pills. Three days out of 7 I have to give myself a needle(I really hate this part).

And I was taking vitamins on top of it. Yet, I ran out of them since I originally started this. So, it doesn't seem like as much now. If you all have been keeping up;you know the only income I have at the moment is saga, which is literally only $219 a month, I can barely afford to survive as it is. 

  I was only able to get the vitamins when I got my stimulus check. And I didn't purchase enough to last a long period of time. 

 If I had the vitamins in the mornings it would be two more. Being that I’ve ran out I haven’t been taking them. There's also another 2 maybe 3 that I didn’t even lost; being that they’re as needed. One I may take more than the others.

 I didn't  go into the names of all of them and the dosages. Being that I'd probably be here all day. Trying to explain them all , and what they are for.

 I'm sure it sounds like I'm complaining. It just tends to get overwhelming at times. I just had to get that off of my chest.

Yes, it took me forever to get this out. Blame the relapses 😂.

Do you take a lot of medications? Or not a lot at all?What are you thoughts on this? 

If you have any questions don't hesitate to ask in the comment section. And Please don't forget to follow and share this blog! It would be greatly appreciated.

Re-edited/Reminders

I hate being reminded of things. Recently I've lost primary custody of my youngest son, due to the issue I have going on, like me being hospitalized, losing my job, and awaiting a response from social security.

I'm really hurt about his father being greedy for money and taking me back to court. Especially being that he's made it seem as though our child was in danger, when he went to school every day, doctors appointments were scheduled an attended, he had new/clean clothes on every day. Yes, that was without me having an income or a car.

I can admit us living house to house was not ideal. But he was in no way shape or form in any type of harm. I love all of my children with everything in me. And most times I would go without to make sure they had. He knew that.

Although it did nott matter to him because his only concern was to get assistance from the state of Connecticut. What kind of man actually makes it his business to try and defraud the state when he actually works? And makes really good money doing so. Yes, this has been reported several times to several different departments. The response was they couldn't do anything because he had his own business and couldn't really track his income (interesting, right?

With all of this going on I chose to sit back and ponder my thoughts, rather than open up and speak about them. Being that its easier for me to deal with them that way. Yes, it bothers me that I only see him every other weekend. And that when I do have him, we have to walk on pins and needles (don't want to get into that part), just to not ruffle any feathers.

It's just so much easier for me to handle it that way. When it's brought up, I'm brought to tears. I've cried more than enough tears and would rather avoid them. I hope everyone could understand that!

I'm not trying to be harsh or trying to stop you from feeling a certain way about how I should feel. But me crying and lashing out isn't going to get me far at all. It all stalls the process I have to take a bit more. Stops me from taking the time to send emails to get help, applying for programs that'll help us, or even writing to attempt to try and make some type of living.

Trying to find a job with no experience and really messed up heath issue just isn't working for me. The reminders of things I could be doing would be doing, and right now just can't do is hurting my situation more. It's not you it really is me. I forgive you for bringing it up. I just hope you can do the same for me. Even if you don't understand or care. Just please take a moment and try to keep that in mind.

I just rather not be reminded.

Please take a moment to share this if you've read it. And maybe even comment and follow if you like. I'm trying to get better at this. Thanks, have a good day!

Re-edit /Surviving Multiple Sclerosis with Mzlittlejohn

How can people expect for you to open up to them about your feelings? When you speak to most people about them, they just start telling you about theirs, or what you should be doing. Most times it’s after you’ve exhausted almost all of your options. What I've been doing lately is writing about them.

If people take the time out to read my writings, they’d understand them better. With the things I have been going through ;although I feel it’s embarrassing, and people are looking at me differently ;this just works better.

I am at the point in my life where I can care less about how people feel. It's initially not for them, it's for me. And it actually helps me get it out. No interruptions, or hearing other peoples thoughts, or what they would do. 

I have to deal with the people telling me no. I have to deal with being sent to different programs. I have to deal with my children no longer having stability ;as well as not having an income, staying with other people, and not knowing if tomorrow will be the day that I’m told I have to leave.

Or having a conversation and seeing something that triggers my tears. Yes, I have those days. Days that I’d just rather be alone with my thoughts. Of Course there is some when I don’t need to be alone.

A lot of times that is my only option. Because right now I am not at liberty to have that option.

One day I’ll get back to not having to result to this. And maybe have conversations with someone who understands.

As of right now, it cannot be done. Especially if when have moments where I have to bite my tongue. Or end up with the conversation being about them or someone else and not me.

As of right now, the conversation's about my feelings. Lets just stick to it being written, typed, and maybe in one of my latest YouTube videos. Heck at the moment, it’s here. And will probably end up back here again.

Because trying to obtain followers on my YouTube page at the moment isn’t getting far. I’m not funny, refuse to do crazy stuff, and just have not quite found my niche with that.

At the moment, there aren't that many videos on there. Currently I’m at a stand still when it comes to what I’d like to talk about. The video I posted before the last was on trying to obtain voice over work. Can you believe they want you to pay upfront to find work? I mean if I had money, I wouldn't t be trying to pay them for work.

I wonder if I pay them, does it guarantee me jobs? Or leads or whatever they consider it? I’m afraid it’ll be a waste of time anyway.

I am not in no way saying that I am no longer interested. In fact I’m still trying to get around having to pay. I’m broke, can you blame me?

If you've gotten this far thank you. I’d say thanks for reading  this far. You're reading this piece written be me. And it is much appreciated. Since this seems to be the best way for me to get my feelings out; there will be more eventually. How often? That is what I’m not to sure about.

Check out my my YouTube page as. The links should be available here( on the left of the web version of this site. 

Please don't hesitate to comment. And follow this blog (again on the left of the web version of this page).

What I've been going through with multiple sclerosis. And my fears about my children back to school.

Blog and Video Update

Something else got in the way in regard to my health. I will be posting a video. It will be posted by the end of next week. I did start on the blog( honestly I started it two weeks ago). So, I will try to edit it soon. Please bear with me! Keep me in your prayers  I'm trying. My health is just getting in the way. The relapse part of the multiple sclerosis is definitely getting real at this point!

check out this  TikTok video for an update for now 

https://vm.tiktok.com/ZMJMtqe28/

I've lost my Focal Point

Still Working On Me ;While Trying To Help Other People Rebuild Their conf...

He’s Testing my skills Even though I’m not well

I’m Learning more On My Own

Even A Little Bit of Support Goes A Long Way

Don't Expect me to support any of your endeavors;If you've never even took the time out to take a sneak peek into mine!

My Baby Boy Said He Was going to Un-follow me on here

Still Surviving Multiple Sclerosis

I saw this on @multipleclerosisupport on Instagram;And I had to share this with a little story of my own.   People  assume because I look okay some days I’m I’m not really as sick as I presume to be that I’m fine. Not knowing that there is days that I have were I fight to push through fatigue. Or about my spasms that I have every few days. Or the migraines that I take pills for daily. 

 Remember as in most cases looks can be deceiving. Take into consideration your words and actions can do a lot to a person’s mental health with what they’re already going through as well.

  If you’re going through something similar drop a comment describing it, and what you do to deal with it! I have a therapist myself and I use aromatherapy.

Trying Something Different Fitness Wise

 Before this I hadn’t been to the gym in almost 10 years. Yes, 10 years since I’ve had a membership. Heck I don’t have one now I’m using my uncles buddy pass. And I’m grateful that he’s allowing me the opportunity.

 Lately I’ve been having spasms lot more than usual. It happens a lot with me having multiple sclerosis.And let’s just face it I’m overweight. Now is a better time than any for me to use the work out clothes that my gramma got me over the summer. 

 My first day back in the gym. My Uncle Kelvin and I. That is my I hate taking pictures face. Especially after I had to put my things down. And a nice lady offered to take the photo.

Back to Surviving Multiple Sclerosis

It's been a little while since I've spoke about my health.

It's not because I didn't want to. I just wasn't sure what I wanted to share.

 And I've also had other things affecting my writing process.

Me still not having an income,depression(yes,I am 

depressed),not having my baby with me, and most recently my 

mom 

and step dad getting into a really bad accident.

By the grace of god they're doing a lot better! 

I'm appreciative of the family members that were able to make sure they were okay!

I'm bothered by this because I am/was unable to do so myself.

My health although it's somewhat stable still has not been back to 

what I'd like for it to be.

Migraines are somewhat normal for me now. Due to me 

having one 

almost everyday.

As well as numbness and tingling.

What I don't miss or wish I could do without all together is the 

tremors.

I got them almost everyday after I was hospitalized the last time.

 So ,me getting them scares me. Although they aren't an everyday thing.

I'm just happy that it's all I have at the moment.

Anything else would have me afraid .

That I'd end up back in the hospital.

The depression comes in from me still not having my own.

My own money, place for my children,and I  .

Definitely unsure how I've been getting but but I have been. 

Which I can actually say I'm actually happy for.

 But thank you to those of you that take the time out to read my blogs.

Eventually I'll be more consistent with them.

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