BrainTumors

My girlfriend just broke up with me. Things moved fast. We moved in together. She has her own slew of mental health issues, but I never judged her. I helped her get her fibromayalgia pain under control. And then, I started to hear what everyone tells me. You’re around too much (I’m on Social Security Disability and can’t work). You’re too sensitive.

After having lived with my parents all of my 33 years on Earth, I got my first taste of what being independent was like. And for a while, I felt what having someone who cares about and loves you feels like.

Now I’ll have to move back in with my parents who are often cold, distant and unloving. The group of friends I made through her I don’t think I can bring myself to hang with. It would just be too awkward. So I’m right back in the dark. Forced to either find some awkward way to meet people like library events, or shut myself back in my room and play video games all day.

What’s the point, I keep asking myself. Maybe I was always meant to be alone. Is it so bad to not have any friends. Or to be single for life?

There’s more to my story. Just briefly, in addition to my autism I’m also a childhood brain tumor survivor.

I have had a lot going on in the last year or two (especially lol). I always have as I have chronic health issues: NF1, chronic pain, migraine, asthma, major depression, and generalized anxiety. I have realized that I endured events that were traumatic but didn't want to label it as such at the time. But I was having a conversation the other day with my therapist and they told me that I need people in my life who see the love in everything. That really hit me. My parents have always seen the love in everything. However, I realize that in past relationships the people haven't always seen the love in everything. And I need more of that as I try to do that for other people. I need people that are accepting and understanding of me as a whole, imperfect person and my health struggles. People that show up consistently. I don't know anyone with NF1 or chronic pain and would like to make friends with them. I'd like to make friends with people who see the love and hope in everything, even in the worst situations. So this is sort of an invite for conversation. And I'm curious how have you cultivated relationships with these individuals or with individuals that have the same conditions as you? I look forward to hearing what everyone has to say and hope you all are having a good day! Thank you 🙂

#NeurofibromatosisType1 #NF1 #Neurofibromatosis #braintumors #ChronicPain #Depression #Anxiety #Asthma #Trauma #change

Had an EEG last Thursday. Reason is falls & other symptoms. I know the results can help diagnose dementia , brain tumors & dementia along with other things. My brother died from a brain tumor last month, seizures would mean no driving & loss of independence. Dementia is the most terrifying. I will stockpile meds if I have this. I’ve seen it play out, not for me
#Waiting anxiously

So, my hydrotherapy that I wanted so long turned out to be a bit of a physical nightmare. I think I had 6 sessions so far. Five in the heated tank and one I pushed them for when the heat wasn’t working (cold) water. Yes, the cold was the best for my body as I thought it would be. Out of six sessions. Fifty percent of them I went in on a rollator/cane and came out the same way. Fifty percent of them left me unable to walk at all and required a wheelchair to leave. Two times while in the tank my body went into major immediate symptoms that required the tank to be drained and getting me out right now. Last week, my session ended abruptly requiring the therapist to call for help and a wheelchair to get me to the emergency room immediately. Six hours later I was on my way home.

The bad news: Each hydrotherapy session in heated water quite literally felt like it tortured my body. Not just for the session but for the rest of the day and two to three days afterwards. Then, it was time to go again and do it all over. I’ve been telling my neurologist for the entire time that my body is suffering immensely with heat/humidity!! I KNOW. I know because I live in a home without a/c or central air, and the summer’s that I’ve lived for my whole life are now intolerable in every way. Why is my voice not heard?

The good news: I don’t have a brain tumor (they did a ct scan), not that I thought I did. I didn’t have a stroke.

The e.r. Dept wants the doc to continue looking at ms and autoimmune illnesses. She also said that the spine stimulator in my body that I’m currently not using NEEDS to be removed. I’ve nobody to do that and who’s going to pay for it?

Now, the therapy department informed me that they will not allow me to continue hydrotherapy at all. They believe that something is attacking my nerves. Umm 🤔 yes, I believe that as well! I feel like my doc does not listen to me at all.

It’s all ground or machine therapy from here on out. This will be so challenging as well seeing how my body can only walk 15-20 minutes max before my feet fold under, the numbness, pain and burning take over 2/3 of my body and I become unable to walk no matter if I’m using a rollator or not. I keep having vision episodes, facial numbing, head tingling and on and in it goes, along with limbs full of numbness and weakness the pain is severe and it is daily.

Today, I’ve therapy in the afternoon, then it’s my sleep deprived eeg in the morning. Wow, what fun I’m going to have in the next 24 hours (my body), NOT! How I’m going to stay awake is the question of the day? Oh hell. 😬 Wish me luck you beautiful people!💕
#MightyTogether #Undiagnosed #CheckInWithMe #MultipleHealthChallenges

#PseudotumorCerebri . I was diagnosed a month ago and boy has it been miserable. However they didn’t exactly tell me what it is just that fluid builds up creating pressure. One if my friends says it’s like having a brain tumor without the tumor. Which I can believe. So can someone explain what this is to me please.