Finally Had My First Dose Observation For Gilenya

I am currently struggling from optic neuritis. It’s extremely painful, my vision is so blurry. It hurts for me to have my eyes open at all, hurts to look at my phone or watch tv. Cant really see it anyways. As I drive to my first dose observation appointment I can bearly read the street signs. The entire 13 years of having this illness I have never experienced this symptom before. It is scary how bad it has become just from me being off my medication for 4 months.

I’m super excited that I’m finally going to be starting my medication. Now 3/27/24. But just because I will be starting my meds does not mean all of my current symptoms will go away.

Appointment

So I get to my appointment at 1pm I don’t get takin back and actually take my pill until 330pm. I get hooked up to the EKG machine. This first dose observation is way different from the first time I did this in 2020. They had me hooked up to the EKG the entire time I was here. They watched me take the pill and then observed me for the two hours to make sure I had no heart arrhythmia. And to make sure my heart didn’t stop. We’re as the first time they just checked my heart before and after. I was there until 6pm with no complications and sent home.

In the end, I was completely exhausted. My migraines have been a daily lately. Extreme pain, and my vision is getting worse. Could barely read the streets signs as I drove so dam blurry. The test went fine, and I made it home. Showered and cacuned in my bed as the pain took over me. I tried not to show it to my family. As the tears started to flow, I tried to wipe them as quickly as they fell.

Optic Neuritis

I have now been experiencing the optic neuritis for over a month. I have been calling my nero over and over and leaving countless messages. With of course no response, explaining that I started my meds and need to sceduled an appoitment with them now. Explaining my vision issues and how its getting worst and all my other many symptoms. They really don’t give a shit about me and that’s the reality. I have loss over 50% of my vision I cant read for shit and steroids is the only thing that can help. If they would just answer there dam phone!

Fibro Doctor Appoitment

I finally had my appointment with an ortho arthritis doctor who specializes in fibromyalgia. Mind you I scheduled this appointment over 4months ago almost forgot I had it. I was diagnosed with fibromyalgia 3years ago by my primary doctor. He basically said I had it but it didn’t go any further than that. Over the years I basically been popping ibuprofen like candy for my pain. which basically never touched my pain. Was on gabapentin for nerve pain but didn’t like the side effects and the way it made me feel so I took myself off of it.

So I told my new primary about my pain if there was anything else he could do for me and how the ibuprofen doesn’t help at all so he referred me to her. First off it was a female first female doctor I’ve had in years and years. And she was so nice, kind, and just caring I have not a doctor treat me like this my entire dam life. Basically the medications to help with fibro pain is nerve medications that my doctors would also treat my MS with. Gabapentin which I told her no, cymbalta but it interfered with my antidepressants. So she decided on Lyrica she started me on a very small dose of 50mg.

She said at my next appointment which was 3 months later she would raise the dose if needed. And I would be getting steroid shots in the back of my neck and legs. Since that is were a lot of my pain is. So back to my shit of a Nero still no response so I asked my primary to refer me to a new Nero because I have just had it. But when I call to schedule at this new Nero office they just keep saying they cant hear me! Then I call back and they keep hanging up on me so I don’t know who’s worst my shit Nero that wont answer or the new one that cant even sceduled the dam appointment!

Update:

So update on Lyrica the first few days I noticed a huge difference. I slept really good and I have insomnia I noticed a huge difference in my pain. So my Nero office finally called me back only to schedule an appointment. I don’t think she actually listened to any of my messages nor cared to get to the body of any of my concerns. She then sceduled my appointment all the way in dam October! Really I should have been seen 4 months ago now I have to wait an additional 7 months really! I say well what are you guys going to do about my symptoms in the mean time? She then says what are your symptoms? Obviously you never listened to any of my dam messages explaining my symptoms over and over!

She then says well you can let him no at your appointment. My appointment in freaking October! She says if they become more severe then you can call back and we can try and get you in sooner. I say vision issues is pretty dam sever don’t you think. Like I should be seen now. She then acts like she didn’t hear me and says ok so we scheduled you have a good day. Really bitch really! So I say F that right I ain’t going. I call and finally schedule an appointment with new Nero which is in September so still far out. And the office is far as hell my car won’t even make it there so who knows. He wont have any of my paperwork so he wont know anything about me or my history.

Grateful But So Dam Mad

I’m so grateful I have started my medication again. I’m so pissed that I had to restart this whole process at all. I’m so mad that I’m now currently in a full-on MS relapse. I’m mad that this relapse is affecting my sight. I’m mad that this illness is so dam invisible and is slowly robbing me of everything I am.

I’m mad that even with me, starting my medication will not make my current symptoms go away. I’m mad at the health care system for allowing people to suffer like this. For allowing us to get treated like this. For allowing people that are dependent on a medication to go without. I’m just mad!

As I lay here trying not to let my current state take over me. I feel it already has a hold. I feel the disease spreading, and I feel it taking hold over my body. I feel it spreading like wild fire. I feel it reaking the havoc that is MS. I feel the depression that has completely consumed me. We’re it seems to be no light at the end of the tunnel.

I’m Not Healed And Whole

I started my medication, yet it doesn’t erase the scars it has left behind. It doesn’t make me healed and whole. Time heals all wounds as I tell myself today is day one. Day one of recovering from this relapse. There’s no timeline when it comes to MS, so I guess only time will tell. As I’m now on the journey of recovery, however long and draining.

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