It hurts 3.21.19

I have so many reminder notes since my short term memory is practically nil, that I now must get creative because my brain will pass right over the regular written notes.

I have so many reminder notes since my short term memory is practically nil, that I now must get creative because my brain will pass right over the regular written notes.

I hate feeling like a whiner. Can we get that out of the way?

I hate feeling like I’m complaining all of the time. I kept so many challenges I’ve been dealing with off the Internet for a long time because of this. This is why I like writing here so much. If people come to read, they WANT to read. I can just go on and on about the CRAZY shit going on in my life.

I’m still processing that doctor appointment yesterday. I only had IV vitamins today so it was an “easy” day. I can’t believe I have an appointment tomorrow at 10am! Ugh that’s very early for me. My brain is barely working during my “good” hours, I hope I can manage the appointment. I felt so sick yesterday during the appointment. [As I edit this, I’m finding an alarming amount of missing words. This terrifies me.]

I will admit, I’m having a hard time finding the fight in me to continue this.

I’m going to find a way to keep my body from dying from malnourishment and then what? I was waiting for my ride outside the doctor office - have I mentioned to you how amazing it is to get RIDES to these appointments. I have no idea I did what I did for so long. Anyway, there was a townhouse for rent for $2300 - a 3 bedroom, 2.5 bathroom near UW area - I’m a North Seattle girl so that area appeals to me.

I fantasized finding a roommate and having a rent that I’m used to - I paid in the $1200/$1300 range for many years (don’t ask me how I managed that in NYC - I have terrible genetic luck but awesome apartment luck). The extra room could be an office and guest room! Attached garage for rainy days! Stove with gas range!

Then it all hits me. I have no income other than disability. I have no food to cook on a gas range except for some eggs and my teas. I should be driving as little as possible.

It’s like getting robbed over and over again.

I really thought I’d figure some of this out. I didn’t think I’d fix EVERYTHING, of course. But I thought I’d find a way to improve things. I really, really thought I’d be able to get off the IV bags. I truly did not think that was a permanent thing (maybe it isn’t?). I’m petrified for summer. It gets so hot now and I feel so shitty when it’s above 80. Yesterday was around 80 degrees which is partly why I think I had such a tough day.

Not only am I not getting better.

I’m getting slowly worse.

I guess no one would think someone very slowly dying is a whiner.

But some do! My therapist explains that sickness and disability make people really uncomfortable - which I totally get. So they project their discomfort onto the patient - at least that’s how I understood it. Add in the possibly dying part and whew! I’m so grateful for the people who continue to show up for me. I realize that it’s not really about ME when people disappear. But it’s hard not to take it personally.

What would the world look like without Julie Negrin?

I haven’t gone there in all this time. I just didn’t. Now, I’m talking to lawyers about setting up the right paperwork. I need to be a grown up about this. I have a little of that disability money that I’d like to leave for the kids. I think I will earmark some for teens who need help. Gosh, I hope I get a little better and can maybe hold some teen classes this summer while I’m holed up inside. I’m going to have to create a space that I don’t hate if I’m trapped indoors.

I think people have a hard time imagining what it’s like to be trapped at home so much. I can’t always visit - I have to focus on my routine and running to the bathroom. But if I can have a few hours per week where I could host a support group? Or find a way to do that online? Skype with others trapped at home?

I don’t know. I keep trying to imagine this next chapter. I usually can always dream up some plan. Develop some projects that I’m excited about. What’s scaring me right now? I can’t see a next chapter. Usually that means something bad is about to happen.

I remember when my work schedule just dried the fuck up around the time they found the colon polyps. I often have lots of work flowing to me - it’s something I’m very proud of, my ability to hustle up work - but things kept getting canceled, changed. I was terrified. When they found the ovarian tumor masses, I was like yup. Fuck.

I LOVE to plan my next chapters. It’s one of my favorite things about not having a lot of ties. I can do ANYTHING. I can go live in Spain and teach English (ok why the hell did I not just DO that one? Ugh so many. I know. The babies. I have to remind myself. Because then I always chill and think: totally worth it. I love my relationships with them).

I was always creating work in some way. Love dreaming up a new chapter of life. Even if it created way more work for me.

That sort of thing doesn’t feel like work to me.

In the second grade, I made homework for myself. FOR REAL. I was jealous of my brother having homework so I insisted my mom buy this workbook (we didn’t have much money so my requests were usually a hard no - but I guess since it was academic…?). I’ve always dreamed up work for myself. The best was when I got paid for it! Either way, I truly derive joy from work and engaging with people in a classroom setting. It’s what I miss most from my old work life. The hours and hours of manual labor? Meh. I’m ok letting that go. The culinary field is not for the aging. I knew chefs in New York that had so many fucked up leg / knee / back / joint issues only in their 40s! And my schedule was nothing like a restaurant chef.

I loved being strong. I loved bounding up subway stairs. I loved being able to be OUT with the people whenever I wanted. I loved being able to hop on a plane and go anywhere. I had quite a few years when I was young where I was very sick with the inflammatory bowel disease and couldn’t do a lot of things. So I definitely valued it when I could.

Now I’m laying in bed and there are parts of my body that just HURT. My ankles, the tops of my feet, my low back. I will HAVE to do my routine tonight - mostly because I have to stretch so much. I didn’t stretch enough last week with all the craziness and the actual flu (please please let these symptoms be leftover from the flu) and I can feel it everywhere. I’ve got to stretch six days a week or it catches up to me quickly.

I haven’t eaten eggs today but my stomach still hurts. It’s so noisy lately because I’ve been putting new products in there. I think it’ll adjust but it’s a process. Oh, also, I’m taking a week off from the castor oil packs that I usually do every night. My massage lady wants to see if the mottling goes away.

Nobody knows what it’s from. The gastro yesterday said it could be nothing. Or, it could be an indication of something not right in there. He was so nice.

I’ve never felt so vulnerable - mentally and physically - in my life. Me, badass tough Julie Negrin reduced to a pile of aching bones and poor cognitive function.

My haters and frenemies must be rejoicing. They can think and say what they want. I feel sorry for people like that. What sad lives they lead. I wouldn’t wish this upon anyone.

Ok, maybe Mitch McConnell. I save all my ire for that evil dude. He’s the one who really allowed the breaking of America. And tried / tries his damndest to break our medical system and kill off medically fragile. Fucker.

I have an idea for him…if only I could do it. If only I had the energy to pull it off.

Right now, I’m thinking I may not make it out of bed tonight. Going to be hell on my back. It already hurts and I haven’t even slept yet!

I don’t know what to do. I’m so glad I have all these people telling me what to do. I’ve never been submissive in my life! Now, I can’t even remember if I just told someone something. Or, I can’t remember what we were talking about. I hear the end of their sentence and forget what was before it. It’s terrible. I can do all right for these appointments, and then I collapse. That’s why these drivers are so key. I took a nap the whole way home since the Magnesium in the IV bag makes you sleepy.

I need to do that one right before bed. Hopefully, if I can find a way to do this at home…I’ll have a chance in hell. I’ll outlive all the naysayers just to give myself a goal.

Now? I hope to survive 2019. I wasn’t joking around when I said a couple of years ago that I’ll be lucky to survive this administration.

I wonder so much about the people who voted in a way that wasn’t helpful to me in 2016. Do they feel bad? Do they know that their vote may have shaved off years of my life? Caused me so much pain and stress? I feel bad for them. I know I know. That’s not a popular sentiment these days.

I often feel sorry for people. I know everyone is trying their best. And may have things from their background that’s impacting their decision making.

My irritation is mostly directed at our medical system.

In my heart of hearts, I just don’t see it being my time to go. But who the fuck knows.

I know that I’m breathing. I know that I love the kids. I know that I’m grateful for my crew who has my back. I’m lucky I have a home. I’m lucky I can still walk, talk and think ok, given everything that’s happened.

I try to remember things like that. How lucky am I to be able to see this sunset! How lucky am I to be able to pick up a child and hug them! How lucky am I that I can sit in a restaurant and catch up with an old friend! How lucky that I can GO to an improv class!

I’ve lost so many “givens” that we take for granted and I’m hyperaware of disability now. So I try to really cherish and appreciate the things that I can still do.

Ok I need to shut my eyes. I got my tasks done for the day. It’s literally the worst full-time job ever what I’m doing. I totally get why I put this off for so long. But Shasta reminded me today on our “business call” about how to manage all my data: once we get my team of doctors together, I’ll have some of that time and energy that’s focused on the “the hunt.” We’re definitely closer than I was a month ago and that’s totally due to her. These past two docs who are lovely were people she found on the Internet! Virigina how do you spell Virginia I can’t google. Ok there it is. Virginia Mason has videos with the doctors talking which allows for better assessment.

She did such a good job. At least I have this guy in my corner - the gastro guy yesterday said he doesn’t have the staff and facility to manage my case - but I basically ignored him and made another appointment. He’s not getting rid of me! When I find a good one, no way I’d say ok bye! Geezus. It’s been almost three years.

I get to see my other gastro next month. I think we’ve known each other like 15? Maybe 20 years? We’re the same age - and as it turns out, I recently discovered mutual friends - and I appreciate him a lot. He’s super kind to me as well. He agreed last year that I would have to go on the hunt. The doctors who are kind are truly wonderful amazing human beings. I should make sure to rave about those here as much as I complain.

Maybe that’s something I’ll do. Every time I say something whiney or complain--y, I need to match it with someone that’s going well or something I appreciate it. Good mental exercises. I try to do these things, make sure at the VERY fucking least, I’m trying to work at becoming a better human being throughout this mess.

There’s really no point if I don’t have that as a goal.

I hope I can be more…wise and benevolent rather than how I am now which is spacey and irritated.

If we can figure out a way to lower the pain and get some more calories in me, I’ll probably feel like fucking WONDER WOMAN so that’s something to hope for.

I need things to hope for.

That’s really important right now.

Best,

Julie