I need to get that stuff, you know, it comes in sliced, in packages, you use it for toast?

That is a literal question I asked someone because I couldn’t remember the word “bread”. Brain fog isn’t anything new for me, but the increase in frequency, and severity of the lapses, has started to concern me. My professor thinks I’m slacking because I had things in at the last second, even when it’s something I already had an extension for. I reassured her that I wasn’t procrastinating. For me to actually retain even a few bits of the material, I need to take my time working on the subject matter. If I miss a lecture, which I have, I don’t just play it and write up a generalized summary to meet the requirements. I listen to a few minutes, pause to take notes, then continue on with the lecture.

Notes on a  two hour lecture typically takes me 6-8 hours.

I need those notes for tests, only in this class, test times don’t really allow for you to dig stuff up in notes or on the books. (I take classes online since I can’t make it to campus anymore.) Another reason for taking accurate notes, is that I love the material. It was different in classes I found incredibly boring. It was material I really wouldn’t use again, and I had no interest. In this class I am interested, it’s just also complex, and contains a lot of minute details. If I can’t remember that bread is what you use to make toast, how am I supposed to grasp the ridge counting system and pattern equations you use to fill out a fingerprint card? (Important side note…I had to take a few minutes to remember the word equation. Sometimes I’ll get annoyed and just look up key words I know related to the word I’m forgetting, but this time I’m proud I figured it out eventually.)

My brain and body are screaming at me to just sleep. I’ve gone from embarrassment of needing a wheelchair, to impatience regarding the length of time it will take to get one. I’m still worried I’ll end up single forever, but I also understand that right now the key is staying alive and protecting my brain from my body’s overly active and very confused immune system.

Most of us who are chronically ill, have had someone judge us as lazy, or we’ve been labeled as procrastinators. We’ve seen the eye rolls, or lost friends because we ran late to often, or cancelled plans.

If I have to be somewhere at 6pm, I start getting ready around 3pm, because I know I’ll need breaks. I also go to bed early, and sleep in, the night before.  If I’m sore, I shower more than once, and take baths to get my muscles as relaxed as possible. I longingly will eye my high heeled shoes, before grabbing my sensible flats. Picking an outfit depends on how long the event will be, and how swollen my various body parts are. Since most of my swelling right now is in my lower abdomen, I have to plan for how that looks. Shape wear?  No way. The pain that results from attempting to contain a bulge that is actually my intestines, colon, ulcers, and of course stool, is beyond explanation.

Last night I saw a movie. It was amazing to go out, but the process began the day before. I tried to be cautious about what I ate, as I usually am, but because I’d eaten a bit more than my intestines could handle, I had a very obvious swelling of my lower abdomen. No worries, we can just kind of layer two tops and hope that it isn’t as noticeable. Makeup? Yeah, that’s fun when you’re arms and legs are weak. I need to get a full length mirror so I can sit and do it easier. Right now I have a rigged up way of doing it that allows me to sit in my bathroom sink so I can use the medicine cabinet mirror to do my makeup.

No, I am not joking.

Forget cleaning up any mess that was made while doing my makeup and hair, if I clean it up, I’ll be too tired, and I was already running 15 minutes late. Now the whole trying to get to my friends house. He’s only like a 5-10 minute walk away, and the weather is nice, but I know that the walk would drain me. It used to be something I wouldn’t think twice about. My part of the city has a free ride electric car that goes around, but alas, there were no available drivers. Plan B was a Lyft Line, but the wait was 10+ minutes, and by this point I am so tired, I really need to take some Zofran. Shift to a regular Lyft which costs more, but doesn’t involve a wait.

So I get in the Lyft, and I’m regretting my large purse, but whatever, I can unload things once I get to his place. As much as  I want to see the movie, I’m considering just going back inside and going to bed, and it’s only like 4pm.

This is where things get really important: I didn’t give up.

I relaxed a bit at his place, he got food (I watched him eat it because that’s what I do now haha), and he was nice and got us a Lyft to the movie theater. Usually it would have been a walk, but I wanted to enjoy the movie. The mall had several flights of stairs that I needed to climb to get up to the theater. The elevator on the side we were on was broken. (Of course…) So we go up stairs, stairs I’ve climbed dozens of times. My legs hurt, parts go numb, I’m starting to wonder if I should just sit down, but I don’t want to make a scene. I start moving slower and slower, but eventually we get to the top. I’m in pain, but we’re there. After enjoying the movie, I remind myself that I need to make it back to see Star Wars, but that perhaps I’ll go alone so I can use the stairs or my walker.

After the movie I did a really dumb thing. We were walking around looking for a specific shop, but we couldn’t find it. We walked and walked and eventually we were almost back at his apartment. So he asked if I was cool with just finishing the walk and I said I was.

But I wasn’t.

Today, I am paying a price. Brain fog is extremely intense, the urge to just keep sleeping is preventing me from doing a decent job on my homework. Have you ever worked out really hard, and you have really sore muscles the next day, where even lifting your spoon is painful? That’s where I’m at. I was having muscle and joint pain before, but pushing myself beyond my limits was just plain stupid.

Lesson: regardless of what you think other people with think of you for using assistive devices, or refusing to walk when the distance is considered walkable, listen to your logical brain. 

I could go to bed right now, and it’s only 5:40pm. I have homework to do, so I can’t just sleep. I could take a bath to ease the pain, but eventually I’ll have to get out. Plus the hot water is a dangerous scenario with my autonomic nervous system being such a bastard lately. Plan is to take a lot of homework breaks, think as much as I can about the homework topics, and if I really need to sleep, then I will let my body sleep.

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I need to get that stuff, you know, it comes in sliced, in packages, you use it for toast?

To Port or Not to Port…and how to ask the question!

During Rituxan, my nurses had noted that my veins were incredibly difficult to work with. This wan’t news to me. Every time I would go in for blood work, it would take multiple sticks before they accessed a vein. The only veins that work for me, are the veins in my hand. There are two exceptions, but neither is practical for every procedure or blood draw. The first exception is whatever sorcery the EMT’s and paramedics use. The only thing I can think of is that while I’m unconscious, or actively seizing, my veins become more prominent due to muscle contractions, and an elevated heart rate and blood pressure. They usually have to stick me at least four times, though, so it isn’t a total win even though they can get that one pesky arm vein. The second exception was what happened during this past hospital stay. After one nurse missed twice, and a second missed once, they asked for a doctor to help. The  doctor missed twice with an ultrasound machine as guidance. This was extra fun because of how deep the needle was during the process. I’d also been given nausea pills that hadn’t really worked, and no pain medications or fluids because, duh, no IV. They were drawing up IM medications when the special IV team arrived. They used another ultrasound machine, and even they struggled, but managed to get it in to a deep vein in my forearm. Luckily they used lidocaine that time, so it didn’t hurt nearly as much.

When I told the doctor that we were in the process of beginning IVIG, she said that it would be a good idea to get a port. I agreed with her, but admitted I was worried. Port maintenance isn’t a huge pain, but I do have vasculitis. I guess my fear is that the existence of a port, potentially increases my risk of blood clotting. (Granted you use heparin to prevent clots from forming, but still, terrifying.) I’m also afraid to ask my doctor.

If I had a port I’d have the option of administering IV Zofran and Phenergan, which would be an enormous help. Right now I’m using medical marijuana way more than I want to be using it. Having to use it multiple times, per day, just to function, is no way to live. I process nausea drugs quickly, so having a fall back option, like marijuana, is the only way I can be sure to avoid vomiting, and is the only way I’m able to consume anything at all. We could also talk with GI about home IV fluids, including banana bags to supplement all the vitamins and whatnot that I’m not getting due to my dietary restrictions.

Previously my doctor made it clear she doesn’t order ports for her patients, as most issues are temporary. I went through chemo, without a port, and it was hell on me and the nurses. Multiple nurses stated multiple times that I should have had a port placed. I was also not allowed to schedule any of the last spots of the day, as it took a good 20-30 minutes each time to find a useable vein. They couldn’t use hand veins, so we always used this same vein on the side of my thumb. It got really aggravated by the end of the six months, but could still be used. As an IV placement, it sucks though. It’s blown several times, and curves over 45 degrees.

I’m just anxious about asking. I’m also anxious about people looking at me weirdly. It’s easier to hide than a wheelchair, obviously, but it’ll still be there, and people may still ask. What will people I date think? How will I even be able to date? I could show up to most dates without a wheelchair, unless they wanted to go for a stroll afterwards. What happens when the time comes for them to see more of me, and this lump is right there by my collar bone?

It’s all hypothetical, of course, and I doubt my doctor will even okay the port…but I anticipate it is going to be necessary if and when we do IVIG. I just don’t have a good vein for it, and if we’re going to be doing it every 4-6 weeks, and if there is blood work like I’ve been getting, it’s time. Every ER doctor and nurse, has wondered why I don’t have a port. I’ve never had a valid answer other than, my doctor doesn’t think I need one.

I know myself. I’ll be anxious if it happens, and anxious if it doesn’t. If I do get one, I’ll be self conscious for a while, then snap out of it. The same goes for the chair. Maybe I wanted one with normal wheels instead of a power chair, but anything is better than my current situation, and I can always make it my own, make it unique.

Also, I’m 1/4 of the way to my goal on You Caring. I can’t wait to reach my goal, keep insurance, and kick some major Behcet’s booty!

To Port or Not to Port…and how to ask the question!

Wheelchair Evaluation and Fundraising

First and foremost, my wheelchair evaluation is in exactly 10 hours! My apartment is nowhere near ready for it, but it’s as good as it’s going to get for right now. One of the aggravating parts about any chronic illness, is having a list of things to do, and only enough energy to do a few things. The kicker is never knowing which things will drain you. I thought for sure I could at least fold and organize my clothes. Instead I ended up with clothes in boxes and baskets. It’s chaos, but at least my space is open for the mobility advisor.

Unfortunately the kitchen and living room are an unusable mess. I try my best to take care of my own messes, but I’ve run out of energy to keep up with my roommate. I know I need to follow through with my promises to do cleaning in lieu of utilities, however, it is just too much. When I was nightly cleaning, I would often end up having him fry something after it was all clean. It just felt futile.

People have been saying, “You walk fine,” and rolling their eyes when it comes to the wheelchair. They don’t seem to appreciate how much effort it takes to walk “fine”. I am constantly reminding my body where things are, and even the constant tension of my muscles can’t always prevent a fall. I used to walk blocks to take the dog to the grassy area. Now going around the block is nearly impossible. There tons of places and things I’d love to do, but I know my body isn’t capable of the walking required.

I am getting a wheelchair because I have ataxia. I am not coordinated, and it is worsening. I also have tremors. A few steps for me, equals a whole lot for someone else. Toss in my difficulty get adequate nutrition, and you have my life.

Then there is the fundraiser. I started a fundraiser to help me keep insurance once my divorce is finalized. It will be hard to continue living where I am living regardless, but if I cannot come up with insurance funds, I’m not sure where I would go or what I would do. There was sone resistance since I did a fundraiser to get to NYU a year or two ago, but that was under different circumstances. My divorce settlement has shifted, and the shift leaves me without insurance, or a way to pay for insurance.

I hate asking for help, but sometimes it has to be done.

Just a short update tonight. I’m quite tired, and I have to be awake earlier than usual!

Wheelchair Evaluation and Fundraising

So Much Sleep

Every single doctor wants to put me on a steroid taper. I was just on a steroid taper. The issue is that the dose of steroids I need to feel relief, is a whole lot higher than what one can maintain long term. The other issue is that it’s just a stop gap measure. We can keep decreasing flare symptoms for a few days at a time, but we aren’t really doing anything for me overall.

Tomorrow I’ll be calling my rheumatologist, but she’s pretty set on me waiting until January to move forward with IVIG. One of the biggest struggles lately has been how much I’m sleeping! Literally fell asleep in the bathroom because I thought I was going to throw up, didn’t, and ended up waking up on the floor. (Now that I’m thinking about it, my jaw hurts, so it is possible I fainted.) Still, I literally slept for at least 12 hours last night. I got up, made it to the couch, and somehow fell asleep again for a couple of hours. Walked my friend’s foster dog, hung out with the friend for a bit, then somehow managed to fall asleep again. Not sure for how long, at least an hour, maybe longer, but my friend woke me up and asked if I was okay.

My memory has been horrid, and I want to watch shows, but I keep falling asleep. At this point I just put things on that I’ve seen before.

One amusing result was me spending several hours convinced my phone was broken. I kept lowering the volume, and was convinced it would stop just before going to mute. I reset my phone. I updated everything. Then I remembered, to put it on mute, I had to use the little toggle button on the side.

I mute my phone regularly…but today, I forgot how to mute my phone. 

While a lot of people would find this alarming, I just a accept it for what it is. I am in a flare, and all my symptoms are heightened because of it. New symptoms are related to old symptoms, and even fully new symptoms seem to be minor compared to established symptoms.

If you have a chronic illness, and you need more sleep than usual, talk to your doctor, and then sleep! 

For a long time I had a lot of shame about how much sleep I needed just to barely function, but now I (for the most part) accept it. Yes, there are days when it aggravates me, but right now I’m just embracing it. Normally my nebulizer would make me jittery, but it didn’t, so that makes me happy! I also don’t explain it to people, at least not in an apologetic way. My automatic response to, “Are you okay,” has become to just say that I am, or even ask why they’re asking. I don’t even think twice because I’ve just accepted how things are…for now.

I will not give up hope. I will have a better quality of life. Maybe I’ll never be in remission, but I will achieve things in this life.

You have a purpose, even if you’re ill…you just have to find it. I’m still digging around for mine, but I will find it. Right now I’m just trying to share my story, and make people who struggle with their illnesses, hopeful.

So Much Sleep

Inhale, Inhaler, Asthma, Weed?!

Disclaimer: The information below is not meant to be medical advice. What works for me, is what works for me. You should consult your physician to get information and guidance on what would be best for you and your situation.      

_______________________________copingwithbehcets________________________________________                       

I’ve gotten a lot of judgment for my use of medical marijuana, so I thought a formal blog addressing it would be a good idea. Today I was reminded that I should address it, because I had to use my nebulizer for a severe breathing attack. I was using the carpet cleaner to clean up my roommate’s dog’s urine. (She has what I like to call “on purposes” because she doesn’t accidentally pee…she just pees.) Anyhow, the spot was quite saturated, and as I got it clean, I started coughing. Really coughing…and then the thick mucous came up.

Have you ever coughed so hard you can’t inhale? You’re coughing and coughing until your body decided maybe vomiting would be easier.

Luckily I didn’t vomit, but it was close. I spent some time on the bathroom floor recovering, but still couldn’t breathe well. I dragged my nebulizer to my room, hooked it up, and instigated the opening of the airways. This meant more coughing, more spitting things up, but ultimately finding oxygen.

Then the steroid jitters kicked in.

The good news was that I was able to finish some of my homework. The bad news was that the shakes continued until the nausea became unbearable. I took the last Zofran tablet in my possession, crossed my fingers that I could get a refill ASASP, and waited for it to kick in.

The thing about severe nausea, especially gastroparesis related nausea, is that staying still and trying not to think about it, doesn’t make it get better. The discomfort grows and grows. 

In the ER I’d beg for IV Zofran immediately…but at home, I don’t have that option. When I hit that wall where I know I can’t go more than a few more moments without vomiting, I reach for the marijuana.

But you said you had asthma?!?!

Yes, I do have breathing difficulties. Perhaps smoking marijuana isn’t the best thing in that situation…but all medications have side effects. First and foremost, I don’t smoke marijuana. It is too harsh, and always causes me to need my inhaler. In a pinch I’ll have someone shotgun me some, but it isn’t the preferred method. I use a vape.

I use a high end vape.

Truth be told, I need to replace the screen, but the biggest thing is that I control the heat, and the filtration is amazing. Within a few minutes my nausea is gone, and I don’t cough, choke, or need to use my inhaler. My doctors who are okay with medical marijuana, are okay with my methodology, though they would prefer I use edibles. The issue with edibles for me, is the same as the Zofran situation. I need the drug to work fast. Plus my digestive system is slow and inefficient in general.

They do sell  ODT Zofran that does act faster, because it dissolves under your tongue.

The reason I don’t use the ODT option is personal, so please don’t assume you’ll have the same issue that I have. Since I am generally dehydrated, my mouth is almost always dry. This isn’t related to vaping marijuana. Even if I haven’t vaped in days, my mouth is like cotton. The ODT therefore takes forever to dissolve. I also can’t tolerate the taste. Most people find it pleasant, but when I’m in a position where I’m going to vomit, the only thing I can tolerate is the taste of peppermint. Usually I pop an Altoid, or put peppermint oil on my lip, after vaping. I really can’t taste anything else when I’m at that level of nausea.

If I had a port, I would smoke a lot less marijuana. I have a nothing against people who use it medically or recreationally. Prior to using it myself, I thought it was stupid, and while I do know folks who have faked medical conditions to get their medical marijuana card, I also have seen folks like myself who do really need it. For the first time in a long time, I learned what it was like to go out, and not have to worry about nausea taking over my evening. If I use the right strain, I can conquer my stomach, and drink water, or work on homework. At the moment the strain I have was cheap, but insanely strong. It works, but it is making me just a bit too relaxed to focus on anything remotely complicated.

So yes, I have asthma, and I use marijuana. I am in no way endorsing this practice, or saying that you should vape if you have marijuana. My current situation makes medicating me difficult. There is no option for my gastroparesis. There is also no real option for my Behcet’s, though we may attempt IVIG. Right now I’m just popping mycophenalate like it’s candy, even though I could never eat actually candy without getting seriously ill.

Inhale, Inhaler, Asthma, Weed?!

Happy Thanksgiving…Send Sorbet and Hugs

I was actually excited for Thanksgiving. Even though I can’t eat much with the gastroparesis and intestinal dysmotility, I was going to be spending time with a friend I haven’t really had a chance to spend time with in years. Then Behcet’s decided it would be a good time to struggle with horrible headaches. I had a ride to LA, but given that it would take 2-3 hours without traffic, or just normal LA traffic, I knew it wouldn’t be the best decision to go. I pushed myself for the musical, then last weekend when another friend came in from out of town. My body is showing the effects.

It’s frustrating. I would have rather spent Thanksgiving with my friend in LA, but because someone else had non-refundable tickets to visit last weekend, what I’d have preferred became unobtainable. If I’d utilized the wheelchair option at the zoo, I likely would be feeling much better right now. Don’t get me wrong, I’d still be stuck in this flare, but maybe it wouldn’t be this bad. Maybe going up to LA would have been the thing that pushed my symptoms over the edge.

Thanksgiving has always been one of my least favorite holidays, anyhow. My stomach issues have been in play for quite some time. Any holiday with a focus on food, is going t be low on my list of preferred holidays. Still, I wanted to see my friend. Symptoms wise, the headaches have gotten worse. I know I need IV steroids, nausea meds, Benadryl, and something else that always forget about. The glorious migraine cocktail, just tweaked a bit. We are 100% sure that my headaches are vascular spasm related, but nothing over the counter works on them. The headaches were bad enough…but then the oral symptoms arose.

I have GI ulcers. I know I do, because of the situation with my bowel movements. They’re infrequent because of the motility issues…but I do have a whole lot of scabbing and skin coming out. Normal people would probably panic, but for me? I’m just glad there isn’t too much blood. To make things extra interesting, I developed a yeast infection. I have medication for it just always on hand, because the infections used to be so frequent. Of course the fun is figuring out what is ulcer related, what is yeast related, and whether it really matters because you’re already taking all the meds you can anyhow…

Then last night, there was some fun. I’ve had some mouth pain and swelling, which I attributed to a few ulcers, and the likelihood that I was brewing up a few more. As the pain got worse, I focused on my chronic state of dehydration. Maybe I was in pain because my mouth kept getting so dry. Last night I ate some gluten free crust with just feta on it, nothing else. I followed that up with a Pedialyte ice pop. I’m eating this ice pop, when I start to wonder two things: the first was, “why does this ice pop make my mouth burn?” and the second was, “what is that taste?”

It turns out my mouth was bleeding. Not in a few spots…just literally all over blood, oozing out of what must have been super tiny blood vessels. 

Yeah. Thanksgiving is hard when you have slow or even no motility in your stomach and intestines. It’s hard when you have GI ulcerations. It’s hard when you aren’t allowed to drive, so you can’t be at all the fun events. Thanksgiving is impossible when your mouth is on fire, and actively bleeding whenever you eat.

All the doctor’s are gone for the weekend, so I’m going to check out urgent care tomorrow if things get worse. The headache needs a cocktail I can only get in the ER, but I’m borderline functional right now. I’d rather sort the headache out at home, rather than expose myself to the ER germ factor. My mouth is a whole other story. I’ll be making some Jell-o this evening, and looking into getting some liquid food options. The most likely culprit is a combination of arteritis, oral ulcers, and thrush. With the seriousness of the yeast infection I have, I wouldn’t be shocked to find yeast was also hanging out in my mouth. It’s gross. It’s painful. It’s embarrassing.

Needing a hug boils down to the reality I’m living in. My dog needs shots, I’m running out of items to sell, and I can’t afford to get textbooks, or even feed myself, if the money I should be getting for my book stipend, food stamps, and disability, never comes. I want to work. That’s the thing people don’t seem to understand. I apply for part-time jobs that I could theoretically do via a wheelchair…but there is a pretty major limit when it comes to the availability of such jobs. My education, my prior experience, it just doesn’t lead to jobs that I can do in my current shape.

I see everyone around me being normal, and I get so frustrated that I can’t just go and be normal, too. This is one of those days where I want to kick, scream, and cry. My body is sick, and aside from brain fog, my mind isn’t. Sure, I have neurological issues, but my mental abilities don’t match with what my body can do. Hopefully the doctors will be willing to push up my IVIG plan. It’s a long shot as it is, but with the symptoms lingering around, I’m willing to take all of the shots available.

Happy Thanksgiving…Send Sorbet and Hugs

Crying With Sadness and Joy

Today I had my rheumatology appointment. It was kind of a big deal because we’ve basically tried everything remotely reasonable at this point. We’ve established I cannot tolerate azathioprine orally. The drugs they use for active ulcers and retinitis, don’t work well for neurological or GI symptoms. I’ve developed antibodies to biologics, or at least developed the reactions you’d expect one to have with antibodies. Either way, I can’t have them anymore. Six months of chemo brought me a few months of relief, but it’s far too soon to do more chemotherapy, and the doses I needed for improvement, are not something human beings are meant to do indefinitely. I tried not to cry, for as long as possible. My amazing rheumatologist has to be thrilled she’ll be on maternity leave during whatever we decide to do, because I’m sure the novelty of having not just a Behcet’s patient, but one with rare complications, has worn off by now. She did mention immunoglobulin therapy as a long shot option, which gave me the strength to ask about plasmapheresis. They use it in complex autoimmune disorders, and it has been used for Behcet’s patients before. She wasn’t sure whether or not it would work in my case, but decided she’d write to Dr. Yacizi at NYU to see if she could get him to weigh in.

Yes, I did cry, I was frustrated and I wanted to know immediately if she thought was a good idea. I have to remember that I am usually just like she is. I want evidence, facts that have the data to prove that something is scientifically valid. She’s not going to just say, “Yes, let’s remove all your plasma and replace it with donor plasma and/or a substitute,” because that is one hell of a rush onboard. 

I left the office feeling defeated. I’m already taking 2 grams of cell cept daily, and while I know I need to see a GI doctor, I don’t love going to see GI doctors. Maybe I could increase to 3 grams of cell cept per day, with GI’s help with the nausea and lack of mobility, but that is one hell of a maybe. Bright side is, I gained way to much weight during chemo and steroids, so I have some literal cushion when it comes to losing weight at my current rate. I’d rather gain muscle and lose fat, but sine I’m mostly fat at this point, I’ll just take whatever comes. I will need to hit the gym in the wheelchair to work on building up muscle strength, but that will come in time.

Waiting for my roommate to come get me, I get a notice that the raffles for the theater show Hamilton have closed for today, opening up the ones for tomorrow. I’ve been trying 3 times a day to win these damn tickets through this app, and failing each time. I’m feeling low, and I’m expecting to see the same “I’m Sorry” message pop up…but instead it says that I’ve won.

Excuse me?

I take a moment to call my “friend” and ask if he’s available to go up to LA tomorrow (they don’t give you much notice so you typically have to be in the city within 36 hours for the show). He immediately agrees which makes me tear up again, only this time I’m happy.

Will this be an easy thing on my body? No. 2.5-3 hours in a car, when motion really sets of my motion sickness, is a risk. The fact he wants to drive back the same night, is just even more of a risk. I’ve got the nausea meds, with the bonus benadryl just in case, at the ready. I’m getting as much sleep as I can tonight, and I’ve warned him that I may sleep on the way back. I’m hoping he takes his parents up on their offer to let us stay at their house that night, since the show doesn’t even begin until 8pm. Between doing my hair and makeup (a task if I’m shaky tomorrow), shaving, the car, dressing in less loose clothing, everything really, I’m going to crash hard on Thursday which, isn’t ideal because I’m supposed to have a job interview at 12:30…but I don’t even want the job to be honest.

Life is a balancing act for everyone, it’s just more apparent when you’re chronically ill. You have to figure out where your limits are, and push them just enough to find enjoyment without endangering yourself or others.

Crossing my fingers I can get the doctors to agree to plasmapheresis and that it’s the treatment I need to get things under control. 

Crying With Sadness and Joy