#I've been nervous to because adjusting to new meds never makes me feel good

[lovelaceisntdead]

did you know that you actually have to take medication prescribed to you for it to work.

[iamthecomet]

Hoot!

(Finally replying, heh)

I honestly really hope that the meds will work too. I‘ll keep on taking the same ones I take now and take the other ones in addition, but they actually benefit? each other (as in, both probably will work better when taken together)

I‘ll most likely start tomorrow, but it will take 4-6 weeks for them to actually make something change. And also my symptoms of like dizziness and headaches will likely get worse at the beginning (this will get better over time tho)

They can also make you feel more suicidal in the beginning (which is because they make you more aware, including more aware of problems) but that also gets better after those 4-6 weeks when the actual effects set in (the new one is a kind of antidepressant)

So like, I’m pretty nervous about that

Yeah, going outside is pretty good but also hella hard to do. Sometimes my friends manage to drag me along, which I very much appreciate (they also need to go slower when we go somewhere by bike because of me, but they do that without ever complaining, for which I’m very thankful).

And you‘re so right. In the past, I’ve sometimes not treated them very kindly because of my insecurities and how I’m scared of being a burden, which is also why I isolate myself a lot, but whenever I feel a little less bad they always welcome me with open arms (they‘re also the reason I can watch movies/series, because 2 of them are so aware of my phobias that they will make me feel safe whenever something triggering happens. It’s literally so damn good, because when I’m watching with them, I can actually enjoy watching without being constantly scared that something triggering could possibly happen)

Also seriously, the way one of them immediately offers her hand for me to squeeze while simultaneously covering my eyes is just the sweetest thing ever

But like, there are other good news I think!

I‘ve been thinking about using a cane for at least months now. I sometimes feel very dizzy, to the point of pre-syncope (even though I never actually fainted before) and especially in the past few days, I feel even more unstable when walking than I usually do. I‘m very scared to go outside, especially on my own and just really don‘t feel safe. And especially during disability pride month, people where explaining what mobility aids can be helpful for what, and dizziness was often mentioned for canes.

And I honestly really think that it would help me a lot, and give me a sense of standing/walking more safely.

I always wanted to wait because I was/am scared that I’m just telling myself all that because I want a cane to get attention.

But my dear ex roommate (and one of the sweetest people alive) actually was like “well if you‘d benefit from it, who cares even if would be partly for attention? What about attention is so bad?“

And I think that they are very right. (They also added that canes do look cool as hell and they are also very right about that. I cannot wait to put stickers all over mine if I actually get one)

So on the next appointment I’ll have with my doctor, I’ll ask her if I can get a prescription for a cane.

Oh god, this got long again. Sorry about that

At least it included a lot of (pretty) positive things I think

At least for me, engaging a lot in fandom content helped me with my post-Ritual depression (as far as it was related to that cause I got regular depression going on as well xD)

But it seems like you‘ve been doing that /pos

~ @owlishanon

Finally digging this out of my drafts SORRY! ♥ I'm so glad things have been looking up! I hope that your meds aren't too hard on you during the adjustment period, and that your side effects are minimal. I'm glad you're friends have been so supportive, and are so good to you. I've probably already said it, but real friends are going to be there for you no matter what--they love all of you (even the not as fun parts) and I'm glad you have some like that. I'm with your ex-roomate on the cane stuff. If it's going to help you, you should do it. Who cares what other people think. If it makes you feel safer, more stable, you shouldn't hesitate to get one. I hope that your conversation with your Dr. about it goes well and you can get one and that it helps! Lots of love to you, I hope things are still going well!

[certifiablecatlady]

Medical Update 2

So on this episode of "Laura's Adventures with IgA Vasculitis" I finally got the first round of serious iv infusion treatment today. I was supposed to start the infusions last month after my rheumatologist and a hematologist agreed that the steroid + immunosuppressants I've been on since February aren't doing enough to get rid of this. The doctor described the new treatment of Rituximab as like when you smack the side of a rabbit ear tv to fix the static. So even though this drug is usually used for other diseases like cancers sometimes just a good smack in the immune system can get rid of vasculitis. But of course the health insurance was being a total bitch so it took weeks of very frustrating phone calls to get approved. Thankfully Sam handles most of the phone calls because he is wonderful and willing to badger them for answers.

I had to go to the hospital at 8 am today for the first infusion of Rituximab. I was of course extremely nervous about how this was going to work but it started off pretty well. The nurse I got (also named Laura and born exactly one day before me?) was very nice and helpful and I tolerated her putting the iv in very well. They brought me to a fairly nice little area with some curtain privacy and a tv where I just watched random Food Network shows all day. I took the pre-meds like a champ and started off alright with the rituximab on a slow trickle. In fact I felt so good I got cocky and had Sam get me some free snacks from the hospital, as I was starving at that point from not having eaten since the previous night. I enjoyed a little applesauce cup and orange jello and some ginger ale and felt good and decided to lie back in my reclining hospital chair to relax which was mistake number two.

I then started feeling extremely cold out of nowhere and had Sam ask the nurses for some blankets but it felt like nothing was enough as my teeth started chattering and body started shivering uncontrollably. I then felt a huge sudden wave of nausea and vomited all my snacks and drinks up until I was just retching clear water. At this point I was panicking that I was allergic to the medication and was never going to be able to cure this stupid disease if nothing works for me. But the nurse assured me that my reaction did not seem to be allergy related. We think it was just me and my weak ass stomach unable to handle eating while on the iv, made ten times worse by my anxiety issues and laying down too soon after eating. So after getting some anti-emetics and finally feeling better after almost an hour, we finally started up the rituximab again and I was able to finish out the treatment by 3 pm.

So that's now 1/4 infusions done and for the next three Thursdays I get to do this again. But I think fasting before and during the appointment should make it go smoother, plus the doctors said the first infusion is always the roughest and slowest as your body adjusts to the meds while they gradually titrate up the dose. After the 4 infusions I imagine I'll go back to the hematologist or rheumatologist and monitor how the meds have worked and maybe I'll finally be cured. Or have to do another 4 infusions in 6 months. Woohoo.

I feel alright now, I've been able to eat and rest without much issue. Got a nasty bruise on my arm from the iv but that's how these things go. It sucks that this has gone on for so long and also with these intense drugs my immune system is basically just off so I can't take any risks about seeing people at all even with masks. I don't get to do Halloween with my family this year or see my friends that I miss dearly. But Sam and the kitties are taking good care of me and here's a free kitty pic for reading my sad medical journal.

[vivavinni]

March 17th, 2018 KC - Mental Me.

Today I don't have anything inspirational to say. I am not in love. I am not politically charged (though I should be.) I'm not even sure I can successfully organize what's been going through my mind, but I need to give it a try.

I saw and shared this post on Facebook today:

This post is so closely relatable. I was the kid who survived multiple suicide attempts; I vacationed in multiple hospitals. I am now the adult who feels ill equipped, unprepared and lost.

My dad died when he was 26 years old, I was 6. Growing up, for me, was much different than most of my friends. My mother was a single parent my entire life. We were always moving, paycheck to paycheck. She did everything she could to keep a roof over my head and keep me alive. We are lucky enough to have a supportive foundation. Our family is a good size, very loving and strong. (This is something I never let go of.)

During years 6-10 I dealt with a good amount of anger and sadness. A great deal of my young childhood is a blur, however, I know for certain I was difficult. I remember I needed certain things to go certain ways to feel mostly comfortable in my skin. (Example- my socks had to be folded over perfectly and fit inside my shoes just right, before I left for school. If they were crooked or slightly uneven I would have a meltdown.) I was and always will be chubby. Even then, I had a lot of small and large insecurities that worried me constantly.

Anxiety, what a friend. He sits right next to Depression, she's always crying about something and obsessing over death.

After years spent fighting my mom about going to counseling meetings and follow ups for learning how to grieve after your best friend and father dies, we thought, "maybe the worst is over..." That was not the case.

A few years passed, maybe age 10-12, and I refused to continue counseling because I didn't understand why I had to do it when none, or most of my friends didn't. I didn't want to be so different, but I was and always will be (and that's okay now). Life seemed relatively normal, I had to adjust to having a new baby sister (which was difficult at first, life moves on). I established a few good friendships and mostly excelled in school. Family gatherings were always a highlight. I was fortunate enough to go on a few very cool vacations to new places which is great fun!

Now, at this point it seems light, happy and chipper, however, I grew up with an obsession with death and all things strange and dark. Keep this in mind. I was weird but hey, I made a couple weird friends so it wasn't too terrible. My favorite shows at this time were CSI: Las Vegas and Buffy, the Vampire Slayer. I also loved gory horror films, thrillers and weird anime. Neat!

Let's fast forward to year 2005, September (already a stressful and emotional month after 9/11/01, my uncle Marc lived only ten blocks away when that occurred but survived well and helped with clean up,) I was a month away from age 14, I believe, I was emotional. I was becoming; I was confused, awkward, angsty, dramatic and a little crazy. Found my way to cope with my friends Anxiety, Depression and new friend Hypermania by way of experimenting with different forms of self harm. You guessed it, I was a cutter and I dabbled in an assortment of substances.

I digress, it's September in 2005, my baby cousin is turning 3 years old, he's gonna have a party! I had the option of staying the night with family or staying with a friend, I chose my friends. The night before my baby cousins birthday party, my uncle Steve (baby cousins father and also my father figure), went to have a beer with someone he thought to be his good friend in need. He, tragically, was wrong. This man shot my uncle twice in the back, as well as committing other atrocious acts before attempting to flea the state.

This event spiked a long downward spiral which eventually led to an uphill battle and this very moment.

I was devastated. My whole family outraged, distraught, grieving, but together. Mental me, lost sight of 'together'. I was lost. I felt alone, hopeless, a nervous wreck, and guilty for choosing to stay with friends instead of family. This turned into depression and suicidal ideation, attempt. I was done, loss of purpose, "what's the point?" Extinction.

My first full hospitalization came after months of self-destruction. It was a very unpleasant experience for me. I was admitted to Research Hospital in their youth psychiatric care unit. They cut my favorite shoelaces off my favorite pair of shoes, striped me down to nothing, heavily medicated me, and told me not to worry. Most of my experience is veiled and distorted by medicine haze. However, I distinctly remember the nurse who was in charge of pm phone calls to home tell me, "I've seen a lot of kids like you, you'll be back again," or something to that effect. After my interaction with her all I remember was turning autopilot on to get myself out of that hospital as quickly and smoothly as possible. I said I felt better, "The meds must be working, I'm working on my steps to release, I'm ready to go home." I lied. I lied my face off. I wasn't ready, the meds weren't right; fake it til you make it out, right?

I stayed in out-patient for a little while with different doctors, different medicines. Faking it to make it. I eventually stopped going and stopped medication. I went through counseling on and off. And continued to self-harm and experiment with different substances. School, to me, was pointless. I stopped showing up, I skipped, got into trouble and eventually made the decision to drop out. For me, school was useless anxiety on top of my generalized anxiety, depression and hypermanic episodes. I was trouble, I was troubled. (Mom, I am so sorry for putting you through so much on top of everything we went through together.)

My mom and I had always had a rocky relationship. It was difficult to relate and be open with her. I'm not entirely sure why it took me so long to figure out she was always on my side and wanted what was best for me. I have some ideas why, but at this point in time they aren't pertinent because now I do have a very strong bond and great deal of respect for her. She loves me unconditionally, as I do her. Through ups and downs and hospital visits we became best friends. I am so grateful for it.

Since the loss of my uncle, I began the journey of my diagnosis and treatment but, not before finding out that my father died of a genetic heart condition called A.R.V.D. My grandma was diagnosed with it as well and has been treated and monitored. I decide, with my mom, that testing for this heart condition was important. In and out of hospitals I went! I was put under multiple stress tests in different variations (one of them I was put under anesthesia for.) Eventually, a temporary heart monitor was placed in my chest for further testing and then I lost insurance.

Here I am! Mental me, years later, without insurance and a dead heart monitor in my chest that should probably be removed soon.

Years have passed. I was hospitalized again after several years of self-harm, destruction, medicine and indulgence. Somehow, I met a few good friends and partners along the way that stayed by my side and helped me after this much brighter stint in the KU Med psychiatric ward.

My KU experience was much more helpful. I took it seriously and learned a great deal about myself, my issues, coping techniques; I learned and accepted that sometimes, hospital visits are necessary and beneficial to mental health and well-being. I knew after that visit that when I am at the point of severe or suicidal ideation there is a safe place to regroup, learn and get better.

Friends, it has taken years and years on this journey to get to this exact moment- Where I am the adult who may be a bit behind because I never planned to make it this far. Here I am! Mental me!

I have been off medications and out of hospitals for nearly four years. I've been through therapy and could always use more of it. It can be helpful. Reach out! Seek the help. Sometimes it will be easier than others to take that step, I know, but keep reaching. Find health coping that works for you. We are not alone even in our most isolated darkness.

When I started writing this I said I didn't have anything inspirational to say because this is all just a piece of my story. I think it's time for me to start sharing it. This is not finished because my story isn't over. And it's true, I never thought I would make it this far, but here I am, MENTAL ME! Let's keep going.

The darkness is temporary, the struggle is constant and the fight is forever. Please, keep fighting, help me fight.

With all my love,

-V

#stayherewithme #stayherewithus #suicideawareness #believeinstayinggold #artsaves #evenifitkillsme #keepreaching #seekhelp #TWLOHA #love #life #selfcare #selflove #beyou #getweird