Always Almost There

I feel like I live my life in a perpetual state of almost there.

I am always almost there.

Or that’s what everyone tells me. When I catch them up on my life. Tell them about the turtle pace I’m living. The one accomplishment that’s new since last time we talked, if I’m lucky to have one. I have so many things that I have almost accomplished.

When you get far enough behind it kind be next to impossible to catch up. In those cases I’ve found it’s just easier to start over with a new dream. Try again. But this time I don’t seem to have way to do that.

I’m stuck in this stagnate almostness. While I watch the people around me moving forward and moving on. Doing amazing things, living! It’s so awesome to hear about, to know these people I grew up with are living their lives.

Don’t Let Them Convince You

I have to say this; for a friend, a fellow spoon, who is dealing with her Rheumtologist telling her she doesn’t have Lupus due to not having an ANA positive blood test results. Which is Lupus 101 people! Many people only test + sometimes, Some people test + all the time (like myself), and others  never test ANA positive at any point in the course of their disease. She has also dealt consistently with unsupportive or negligently supportive family members, due to their lack of understanding or lack of belief in her having the disease.

I know there are many others out there dealing with doctors and family members being unbelieving. I was lucky I always have my parents on my side even if it takes a while for me to find a way to explain an issue so that my parents understand it. It’s not like they can back something up they don’t know!

So to my fellow Spoonies and dear friend, ;)

Don’t let them convince you that you are wrong about what you are feeling happening to your body. If you know something is wrong or right and the doctor says otherwise, for now, work on home remedies to help with the symptoms, but do research of your own and search for new doctors. Get diagnoses slowly. Push and don’t stop pushing. Don’t let people around you discourage you! Go for the littler diagnoses first, then get the specialists to realize the connection and make the large combined diagnosis. For example Thrombocytopinia, Arthritis, Fibromyalgia, Raynaud’s Syndrome. All it takes is one specialist finally making the connection between symptoms to finally move forward with a proper diagnosis.

No matter what, I am the only person who can feel what is going on inside my body. Part of the problem I dealt with growing up was being told what is going on with my body by doctors and what needed to be done to fix it all of the time. Really, I was lucky if a doctor bothered to explain what was wrong in any abridged fashion. Some doctors still treat me like this as an adult. They forget that they are only my medical advisors, they don’t make my medical choices for me. Doctors have the training; but they can’t actually know what is happening to my body past the signs that they see in the blood work and looking at my body and the symptoms that I explain in what words I choose to describe them in.

Not having positive ANA in your blood-work, as well as not having the average numbers on any other blood-work the doctor decides is necessary, will mean the doctor makes an assumption that isn’t necessarily correct. Let me ask you, how do we explain people with auto-immune diseases who never test positive? We can’t explain that by doctors’ “rules.” We can only explain it if it is understood that not enough is medically known about our disease yet, so  a lot of what patients are forced to rely on, as a 24/7 hotline doctor, themselves alone.

I was raised with this disease. I was taught to notice, feel, and decipher all of the sensations that are occurring in my system. Where it became difficult (for all of us) was trying to find words that just don’t seem to exist in the English language to describe what I am feeling to someone who has never felt the same sensations. It was always exciting when I was able to latch on to some weird mangled phrase or analogy that finally clicked in other people’s heads. When that happened, my parents would help me figure out a way to speak doctor-ese so that the doctor, who is listening for key words and will often dismiss anything else (depending on the doc), will understand the symptom I am explaining and be able to properly treat me. It’s a process (I’ll tell you what!!)!

Certainly the concept of scales/ratio that we autoimmune patients are always being asked to describe (“On a scale of 1 to 10, how much does it hurt?) is so skewed that any common understanding we might have had stops right there–and frequently goes backward to the point where what I am actually experiencing can become minimized. The other person walks away with an incorrect view of my situation which is also demeaning to myself and my disease. When this happens, a person like that, rarely has the ability to grasp the difference even if I try to teach it to them.

So, fellow spoonies and dear friend, Don’t let them convince you that you are wrong about what you are feeling happening to your body.

Last Hoorah

I want one last hooray before I really start the process. I mean I know it all started weeks ago with all of the tests and nonsense. But I feel like the first infusion is me really STARTING everything. So I want to visit our friends at the Xmas parties this weekend before I start.

I wanted a chance to see everyone in our group of friends that we see most often. Granted lately we have been spending a lot of our time out with a different main group, but these are still people I would never walk away from! This is why it was especially important for me that I get to “say goodbye” to everyone before I started my Infusions. I mean, how many of these kids have the time, let alone will choose to spend it on me once I can’t come to them? Here’s the catch: the party is at the bosses house that fired me.


I got to go to the Xmas party of the work place that we have been slowly drifting toward more and more. They are our age group, closer to our interests, as well as more interested in the same sort of relaxed life style we prefer. Over the dramatized lives of the younger groups we tend to be around.

Fired for my Health

I still feel like it is my fault. I can’t be totally furious at the Big boss for firing me, from his perspective I am not giving his business my all or as far as he is concerned my all isn’t good enough, which ever.

But for the Big boss to not even be willing to meet with me to discuss the situation, to fire me in person at the very least!? Give me the opportunity to apologize, explain, discuss possible options. Maybe ask for a second chance with probation and accommodations that take my health in to account this time around???

I mean I am willing to work the grime-y jobs that nobody wants to deal with, I would work on probation only with the Big boss on shift til he feels comfortable with my skills. I would be willing to do whatever he wanted to show that I truly want this job and believe I can do it! I just need time for my body to warm up to having regular physical, sleep deprived stress where I have to maintain a pep and vitality that brings me back to sorority recruitment… The worst part? I picked up this shift for someone else. I wasn’t supposed to work it originally. I would still have my job if I hadn’t tried to help somebody else out.

Side note: Big boss and my Momma dislike each other greatly in our city’s political arena, I was getting weird vibes when the other boss hired me… part of me wonders if it’s my last name that lead to this? I gave him the first excuse possible and he jumped on it, my own damn fault, I know better than to not be perfect for at least 4mths sick or not. Unlike his other ‘”kids,’ whom he protects, and listens to, and understands, and gives many chances, cause they are “only children.” I appear to not even get the respect to give him a face to face apology… I am being inappropriate thinking he, the adult/superior, is making the bad mannered choices. Be a gentleman please, I am trying to be that, I would like to apologize for not being there when I promised I would, traumatizing the bosses’ trust of me understandably, and putting my coworkers in a bind on a busy weekend morning for the hour I was late.

I couldn’t help it. there was nothing I could do to help it. But I want some ability to walk away with respect, this isn’t a break-up over text. I understand the mistake as viewed by the normie population. I respect that, currently, especially in non-degree requiring minimum wage jobs they will be far less interested in working with the non-normal accommodation requiring employee.

Not due to some prejudice against a person having a disability, but rather a disinterest in figuring out a new system or rule. It’s more work to deal with, that would require altering a business plan that’s been golden as far as they’re concerned since the ’70s. As a child of America’s capitalistic lifestyle indoctrinations, I’ve been surrounded by the belief that the bottom line is the end all, making money matters, you mess up their numbers you get  cut. No exceptions, there isn’t a good reason to keep you. But this boss is known for being lenient and giving female workers extra chances. But not me, he LOVES my BF, but won’t give me a second chance? I was raised in a household with a very socialized perspective of life. I never understand not valuing an individual in the way that specific person is able to provide, as far as their best, to the group. We all do what we can. I dropped the ball this time. Why can’t Big boss step back from his capitalistic employee culling and give my circumstance a listen? Maybe my mind is quick enough and I’m personable enough that in the end I’ll be worth giving a little extra time to give my body a chance to catch up in matching it’s pain tolerance, sleep adjustment, usage adjustment, constant loud noise with chronic migraines adjustment, etc. to deal evenly with keeping my health in good balance. I was doing it. I would have gotten there. I only got to work two shifts. I just needed more time. I needed him to be willing to be understanding enough to talk to me and work out a way for me to show him I am reliable… I just have health issues to deal with, if he will put up with those things with me then I can be of great value, cause I never just get comfortable or lazy, I never stop trying.

Text Convo with my Bestie about getting fired (and her break-up means new beginnings for both of us: her argument):

  • May: It’s a new life for us!
  • Me: Here’s hoping
  • Me: I’m in such a blah mood now about everything though
  • Me: I got fired
  • Me: Like for real, no matter what the reason. In the end somebody thought I wasn’t good enough
  • May: You still have a lot going for you once you finish your Incompletes and graduate. You have so many goals that deserve your focus and all of that positive energy. Energy you were putting in to a job that wasn’t willing to meet you half way
  • Me: I’ve never had anything like that happen to me before though:( I always make allowances to be sure; back up plans for back up plans for back up plans! I never wanted to risk something so nightmarish as what actually happened

I was so proud of myself for functioning through so much pain (one shift I couldn’t stand on one hip or move my left wrist in any direction at all), I think no one noticed the crippled joints! I hid it that well and kept up for a newbie! I’ve been trying so hard to just be one of the workers with everyone else and not ask for special accommodations. I just needed more time, memorizing the menu slowly but surely despite the fibro fog that’s been bad, despite the migraine that hasn’t gone away now in days, despite not sleeping since Wednesday night because my insomnia is getting bad as I progress into an RA flare-up. Getting ready for work hours early cause I can’t do up buttons on my clothes, I can’t bend my elbows or wrists & fingers to do my own hair. I can’t zip my pants zippers, do up my bra hooks, tie my shoe-laces… despite all of this I made it my first two shifts and I’m pretty sure no one could tell I could barely function! I found the weirdest ways to use my hands so I could get my job done, but I was gonna do it! Be damned if I asked for more than just clarifying questions, I just as competent as the other girls here and I’d prove it. I worked through it! I’ve always been afraid I wouldn’t be able to when push comes to shove, but I did it:) I couldn’t function the rest of the week… I couldn’t move from Thursday morning after work until late Sunday night. But I also couldn’t sleep cause the pain was so excessive. So I didn’t sleep until 5am Saturday morning… My BF said I should stay up so I didn’t risk being late. He and the other employees pull double all-nighters all the time. the difference is my body pays on a level that these kids can’t even fathom as a consequence yet. I was starting to nod off standing up dancing to music I had to nap. One sleep cycle and my body should wake up (especially as much water as I’d been chugging, I’d have to pee soon!) and I’ll have absorbed more of the bagel recipes  and prices I had memorized from sleeping after studying.

.. then I was an hour late to my third shift that I picked up for extra practice. I really wanted more practice before classes got in to the swing of things for actually making the bagels.

But we didn’t wake up. I had 5 alarms set neither BF nor I woke to a single alarm. BF had 3 alarms set on his phone. But his phone died after he put it under his pillow in his sleep when his first alarm went off… It’s all my fault, I was the one irresponsible enough not to take the consequences of staying up another night, so that I could make it to the shift I had agreed to be there for. Not being able to get out of bed for a week or two afterward would be worth still having the job, wouldn’t it? But the academic parents in my brain are arguing that just because that is the way things are set-up right now does not make it the correct or fair way, nor does it appropriately depict the spirit of the ADA even if it slips in through some loop hole.

Convo with Bestie, May, contd.

  • Me: Maybe I am just an idiot college kid and slept in cause I’m irresponsible like everyone believes I must be and I’m deluding myself…
  • May: You’re not an idiot
  • Me: I think maybe I am and I’m full of myself, and I think I get stuff, but I don’t get shit, and everyone else is moving forward around me and all I get to do is brush shoulders with them as they pass me cause I’m standing still.
  • May: you are NOT an idiot. At all. You’re not deluding yourself. You were a half-hour early all your other shifts before this happened. You would have been early yesterday too… you were sick. This boss doesn’t even want to give you the chance to tell him that? Then this job isn’t a good fit. That happens. You have skills girl, find a job where they value the skills enough that the accommodations seem like nothing to them!

This is why having support from your friends is so important. It isn’t that I didn’t know these things May was telling me, I just needed to hear it from someone else… does that ever happen to you?

Rebuilding my Confidence

How do I rebuild my confidence when I have put all of my energy in to the few options I thought I had left. But I have burned those options without even trying, I didn’t self-sabotage, I didn’t make a bad choice, it was just the usual everyday Lupus struggle. But that was more than my new boss was willing to deal with. I can’t blame him. I get tired of dealing with me and all of the exceptions and alterations I require for anything to work for me.

But in order for me to keep going, to continue to build the confidence in myself that I can be an independent person, I need people in my corner. As much as I have seen this man support other students who are going through things due to their own BAD choices, I thought of all people he would be willing to have the patience to understand my health condition. I was wrong. Apparently, I don’t deserve the chance to show that I can be valuable as a worker, I just have to be given time for my body to adjust and some allowance for the fact that health stuff crops up out of nowhere and I can’t do anything about that!


Adventures keep me alive. Even sick, when I’m in the right frame of mind, no matter how immobilized I am, I just have to get out and experience something! I’m recovering from an all night shift last night. Instead of being able to sleep though, my body is so stiff and in RA pain, that I can’t get comfy or fall asleep.

Even though I am moving like Barbie right now I had a good day today! With totally stiff elbows and wrists;) I knew I needed to do something today or I was gonna go stir crazy! I mean come on I’ve been sleeping almost 20hrs a day lately!

The guys took me on a surprise jaunt to Jungle Jim’s (granted it was my idea, but they jumped on board) for some fun and goodies! I got some really yummy snacks and I also got fixings to make some Indian dishes! We are going ot try to make Tandoori chicken ourselves! I got lots of chocolate;) Like Toblerone, and Lindt bars, red bean kochi balls, dark chocolate covered pretzels w/toffee chips, real licorice, ghirardelli dark chocolate package… I went chocolate crazy I admit it.

But I also got a few interesting wines and beers to try. I got a pine nut hummus, which I’ve tried and liked before. Some blueberry jam and blackberry jam made by Trappist monks, I really like their stuff!

We didn’t spend as long a time there as I’m used to a trip to the Jungle taking, so perhaps that’s part of why I’m still mildly functioning, not to mention I didn’t peter out half way around the store! I’m not sure why I would still be ok I should have crashed by now. But I barely slept last night. when I say barely, I mean I took the max pills for sleeping I could (spaced out I was hoping a smaller dose would work) and I fell asleep for about two hours on and off all addd up. ggrrrr and I’m still going… I need to just relax. But then things stiffen and hurt and I feel whine-y I want to wine, but I will just put on Graceland – Paul Simon and get my dance mood going.

1st Night On The Job

Ok… OUCH! I hurt. I hurt in ways I totally forgot would be a problem. I’ve worked a job where I stand the entire time on shift, but I forgot what lovely “side-affects” come with being on my feet for hours on end! I remember certain pains like my shins and my lower back, but what’s with the arm pain!?

Oh yeah, reaching over the counter for people to pay me, great.

Thing is, I know that as soon as I can identify all of the different movements that I do at work that are repetitive motions, I’ll be able to begin to compensate for the problems/pain. Once I figure out what these movements are I can modify them so that I don’t hurt myself as much. By either changing up the movement here and there so it isn’t one motion all of the time or by figuring out a different way to perform the movement do that it isn’t as painful for me to repeat.

At least my new sneakers helped, so that of all things my feet don’t hurt! Hahaha That never happens! Not if I’ve been standing much longer than 10mins!

But every other muscle and joint in my body is swollen and throbbing from pain. Add in ridiculously sharp pain shooting through each joint and most muscles whether in motion or not, well… not so happy right now. Not to mention the migraine that I had precursors for when I was winding down after work. Honestly I was hoping that it was just stress or exhaustion symptoms. Apparently they weren’t though, my brain pain and vertigo is ridiculous right now. I’m going back to sleep, I’m on like third nap of the day hehehe Best way to recovery;)

First Shift Friday Night… close

Well I worked my first shift last night. I worked until 4:30am The shift went really fast! I had a terrible time trying to do math. I will have to practice adding and subtracting:/ I can’t believe how my brain can’t figure out what $6.25+$7.50+$4.00 equals… my brain shouldn’t blank on that stuff! But I’ve had trouble with math since my strokes. I’m really hoping that practicing will help me get in the swing of adding and subtracting.

Getting a Job

I got a job today!! I haven’t had a job in years, so I am a little worried about getting back in the swing of things. Not to mention it is a job where I will be standing for the whole shift… I am a nervous that I will end up getting sick and hospitalized again like all the other jobs I’ve had!! But until then, I’m just excited I was able to get a job after being off the market so long and not building a resume of jobs all these years!

On another note. My rash on my face and hands is getting much much worse!! this is one of the most benign yet painful and frustrating symptoms I’ve had to deal with! This rash makes just petting my cats hurt:(

It looks like all of my friends are going out tonight. But they have chosen a venue and “party hard” style for the night that they all KNOW I can’t participate in. I REALLY want to go out tonight, since it’s the last weekend before all the college students come back to town! But I’m not sure anyone is looking for a chill evening like I would be able to be a part of…

I really want to celebrate that I made such a big step! We’ll see who I can entice;)