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

Don’t Make Decisions When You’re Panicking

My friend Molly lives in Mexico. She works in the U.S., but she lives in Mexico, and she loves it. Lately I’ve been struggling financially. That’s a lie, I’m drowning financially. As I try and come up with ways to stem the financial hemorrhage, while my symptoms increase, my mind starts to scramble, I start to tell myself I should just run. It isn’t rational, and I know it…but I can’t help but embrace the flight after so spending so much time embracing the fight.

This is why you don’t make a decision while you’re panicking.

In the past month, I’ve thought about moving to Virginia, North Carolina, New York, Washington DC, Washington State, Los Angeles, and Texas. This isn’t an over exaggeration. If anything, I’m forgetting a state or two. The only real reason I haven’t moved forward is that I love it where I am, and the thought of having to move myself, and two dogs, wherever, is daunting. I’d also have to rent my room out.

It isn’t undoable, it’s just not something I should (or would) rush into. I have thoughts, though. I think about stopping my medications, seeing what happens. It isn’t because I want to get sicker, but because some part of me hopes that I would get better. There is no logic behind it, in fact, I know logically that it would be a terrible plan. Even on my current medications, I struggle to get by. I required IV fluids on Monday, and I’m sure gastroenterology tomorrow will decide I should be getting IV fluids more often. (At least I hope they come to that conclusion. Waiting until I’m sick enough to warrant an urgent care or ER visit, is just not good for my body.)

I want to go camping. I want to have a normal life. I want to ice skate on the beach. I want to fish off a pier.

It isn’t just about what I want though, it’s about what I need.

As I move forward with scheduling an appointment with the new mental health provider at literally the only clinic within 30 miles that takes my insurance, I have to face the reality that they’ll force me back into counseling. Don’t get me wrong, counseling is a wonderful tool, and it has definitely helped me in the past…but the type of counseling I would receive, isn’t the type of counseling that would help me in this instance. We could go through my history, and evaluate why I feel how I feel about myself, the causes for my low self esteem…but that won’t change the limitations that I have now.

I’ve found a lot of counselors don’t know how to approach someone who is chronically ill, which is a part of a the reason why I blog, and started an Instagram. It’s also why I plan on starting up a YouTube channel once I’m able to acquire the space and privacy. Us sick folks talk to one another, but we aren’t really honest about the emotional toll our illnesses take on us. We may joke about not having personal lives, being in long-term relationships with our heating pads, or cheating on Naproxen with Acetaminophen…but the thread in all of that is that we joke about it.

When you’re chronically ill, you’re more likely to make light of your difficulties, than to be honest about them. You’ve been judged for complaining, so now when you need to vent, you do it in a comical way. Friends laugh with you, even chronically ill friends…but who do you have that is willing to listen to you when you’re genuinely struggling?

I think the answer to that question is probably scary. I had a friend who would always listen to me, and I would always listen to her…until one day she told me my disease was consuming me. This was about a month ago, and I shut down. I threw myself into only being positive about my disease and the conditions that sprung off of it. And while I know that there is a lot of positive things that I can focus on as a result of having Behcet’s, I’d be lying if I didn’t admit that I grieve the loss of a lot of things, especially this time of year.

When I was younger I made plans. I was the insane planner. Even when I began to get ill, I still had plans. I didn’t think about my disease worsening. I couldn’t have imagined the path my life would take. While the divorce should have been foreseeable (it was to those around me), my Behcet’s becoming the severe was never even on my radar. My ex told me nobody would ever love a sick girl like me, but I had told myself he was only saying it to hurt me. He knew that I was insecure about my health, I still am, and he couldn’t have known at that point in time that my health would rapidly decline…still…the words haunt me.

I had plans to have kids around the age of 30. I’m 31, single, and am on several drugs that you absolutely cannot take during pregnancy. It also isn’t known whether or not the Cytoxan impacted my fertility or not. My run in with cervical cancer also cost me a chunk of my cervix, right in the center. While I was lucky not to need further treatment, just a few more biopsies and regular tests each year, I was warned that I would potentially need a cerclage during pregnancy to prevent preterm labor. Two different doctors also told me, point blank, that I would be high risk from the second I conceived. The second told me that even without the drugs I’m taking that cause issues during pregnancy, I would still need to carefully plan any pregnancies. It isn’t a case of deciding when I’m ready to start a family, it’s about actually seeing doctors months in advance for blood work, supplements, and other tests.

It isn’t just the idea of starting a family. I know that I theoretically have time for that, and there is adoption and surrogacy if carrying a child myself isn’t possible. The other issue is that it’s the holidays. While most people love this time of year, I find it utterly depressing. For years I was in an unhappy marriage, and the holidays meant making sure to put on the correct face and attitude. I had to be convincing. I had to go to my ex’s coworkers’ parties, and while there were some good times in my marriage that I could lean on for support, there were many many reasons why I was anxious in these situations. Would I say something wrong? Was he looking at me in a way that meant something I should be able to pick up on?

I had thought being free of that would mean that I could relax, but because of my health, I haven’t really been able to enjoy the holidays. While I’ll never truly know what he, or anyone else for that matter, is actually thinking during the holidays, I know that I look around and feel so utterly alone. Thanksgiving? I can’t eat. Christmas? I desperately want to ice skate this year…but I know that doing so would require adaptive equipment and I don’t want to be the girl with a walker on the ice skating rink. Perhaps I’ll go see a movie on Christmas day, to try and distract myself from just how alone I feel…but there is so much of me that resents my body during these periods of time.

Plus time! Holidays remind me that time is passing,g and I can remember last year choosing to do all of my chemo treatments near holidays so that this year the holidays would have to be better. Instead I’m being reminded that I sacrificed those holidays and now I’m stuck fighting for a treatment that manages my symptoms better. I don’t regret doing chemotherapy, it was the right choice, I’m just desperate for something that can make me enjoy my days in general.

The holidays are just anxiety provoking for me. I want so much, but am so limited. Even the idea of getting my wheelchair has been bogged down by the reality that the process takes some time…and my insurance coverage is going to be gone soon. The up and down and go-go-go of the seasons, probably give most people with chronic illnesses a bit of anxiety!

I told myself for Halloween I’d carve a pumpkin, but I didn’t. I told myself for Thanksgiving I would find gluten free stuffing, and spend time with my friend in Los Angeles, but I couldn’t. There are things I want to do for Christmas, but I’m afraid to even say what they are, because I don’t know how to make them happen. Perhaps I will go ice skate on the beach, even if it means using adaptive equipment, but I would have to do it alone. Nobody I know could afford to go, hell I can’t afford to go, but I really want to do it. (It’s on my bucket list.) The people I do know who could afford to go, probably wouldn’t want to see me with one of those stands children use to keep themselves from falling.

To be honest I really wish I could just spend a weekend in a cabin, and see the dogs play in the snow.

Well, I guess I put it into words. Perhaps the idea is to have ideas, but no expectations. I wanted to be somewhere else at this stage in my life, and I may just have to accept that my path has shifted. It doesn’t mean I won’t have the things I wanted, I just have to find a new way of getting there…

Don’t Make Decisions When You’re Panicking

Grieve and then Grow

I woke up today several times. It was one of those mornings when nausea wakes me up, so I handle it with medical marijuana because it’s the fastest working thing that won’t increase my seizure risk…then go back to sleep until it returns. My rheumatologist messaged me back and basically had said that I needed to see my primary care doctor, or go to urgent care/the ER. My primary care doctor didn’t have openings, and urgent care is closer.

At this point I know what I need…fluids and nauseas drugs. I also know the reality is I need something to make this flare go away. Nothing is going to make this flare go away, at least not anything that can be reasonably sustained over a period of time. The ER this time of year is a just a pile of germs, especially after a holiday weekend, and unfortunately urgent care wasn’t much better.

The first doctor was sort of baffled by my symptoms, and wanted me to go to the ER and be admitted to the hospital. She recognized what I already knew…anything they did today, was just going to be a stop gap measure. I needed treatment of the underlying cause, not just the symptoms. Preaching to the choir doctor…but I’m not going to hang out in the hospital while confused staff rheumatologists go through my charts and realize we’ve tried all of the conventional stuff. She also said the marijuana could be causing my constipation. The day I used the most was the day I finally went to the bathroom, probably because I was able to drink enough water that day…

So she gets a bit flustered and says she can’t make me go to the hospital, and I ask if I can get fluids and nausea meds there (in urgent care) and she says yes.

Let the process of trying to draw my blood and place an IV commence…

Look, I have bad veins by all standards, but toss in the vasculitis and even the best nurse is going to struggle. They manage to get the IV in, but drawing blood requires two nurses, because one has to keep the needle in place while the other swaps tubes. I also bleed super slow, so that was making it extra fun. After this point a new doctor comes in, because of shift change, and he’s a laid back guy. He agrees I’m flaring, contemplates trying a different steroid, but after talking about my prior issues with steroids (needing super high doses for any sort of efficacy) he agrees that my original plan makes the most sense. Get the fluids, check the labs, and switch over to a high fluid diet in lieu of solids. It’s better to eat ice pops and Jell-o, than to end up in the ER because I’ve had solids but no fluids.

When you’ve been sick for so long, you learn to sort of gauge what the right response is to whatever symptoms arise. It’s only when something new pops up, that you’re truly thrown off. My doctors, especially ER doctors who haven’t seen me before, are going to struggle a bit to process what the best course of action is. I get it. If I were any other patient, you’d keep me until I had symptom control. I won’t get symptom control that can be extended after my exit from the hospital. It isn’t a pessimistic view, it’s reality. At this point in time, there isn’t anything they can do for me during an admission, that is going to extend beyond 1-2 w weeks post admission.

That is the depressing part. I want a normal life, LA with my friends for the holidays, ice skating, and running around the beach. I want to join a sports league in my city, so I can meet new people, and bowl!

Could I bowl? Absolutely. Could I plan in advance what days I would be physically able to bowl? No. That is the part that sucks. I am normal, but I can’t be normal. I want to work, I want to buy things on Cyber Monday, and I want to make holiday plans. There are so many things my friends and family members are doing, that I just can’t, at least not consistently.

This has been the struggle with disability. There are some days when I am able, but other days when I need medical intervention just to obtain adequate hydration. I don’t get to choose which days are which. I can choose when I get some of my medical procedures, but again, that doesn’t guarantee what days I’ll feel what way.

It isn’t all, “I hate my life!”

One thing I’ve been wanting to do lately, is bring people together who struggle with chronic illnesses. I am optimistic, and I do cope, but I definitely have days when I just can’t, and that is okay! Kick, scream, cry, do whatever it is you need to do. Embrace the anger and the sadness. Why? You need to make peace with the negative parts of your illness. I always thought it was black and white. That if I was pessimistic, at all, I would be giving power to the disease. The truth is that we can’t be honestly positive, until we have embraced the things we’ve lost to our diseases.

How can I appreciate the interest I’ve found in investigative forensics, unless I own the fact that I’ve lost my ability to really be in a laboratory environment on a consistent basis? How can I appreciate the absolute amazingness of my friends who have stood by me, or have come into my life during this difficult journey, until I grieve for the friends and family that I’ve lost because they couldn’t handle my illness?

Turn the losses into gains, by acknowledging just how beautiful your new circumstances are…because they’ve grown from the loss of something else.

Grieve. I grieve the loss right now, of my ability to do the things I would normally do this time of year. I grieve the opportunity to join a sports club. I grieve for my financial losses. I grieve because it’s natural, and because I know that I will be able to connect these losses together once something beautiful has grown up from their roots.

I don’t believe that everything happens for a reason, but I do believe that positivity allows you to make sense of the things that have happened in your life.

Grieve and then Grow

Revisiting Original Content – My Ex, My Friend, and of course Dating

Okay, so it’s time for a bit of a flashback Friday. Without digging back into original posts, I’ve come to realize that there has been a bit of discussion regarding my personal life, and how my personal life has contributed to my struggle with Behcet’s. After some thought I’ve decided not to delete those posts, but instead, address my situations (past and present) in a new posts.

I got married to my high school sweetheart literally 10 days after I turned 20. At the time I didn’t see red flags, nor did I think anything other than we were young, and we’d need to grow together. That isn’t quite how things turned out. Within a few days of our wedding, he was deployed with the Navy. Within a month, I was sexually assaulted over a period of about a week by a mutual friend of ours. That horror was pursued by an investigation that was marred by, frankly, a ton of disinterest. Civilian officers had other more provable cases to deal with, and military police just wanted my assailant out of the Navy. He was discharged on “unrelated” charges, but it was sort of common knowledge that they didn’t want to deal with the rape charges.

After all of this there was a disconnect between my husband and I. My PTSD from the assault formed the framework for some insidious abuse. Mentally and emotionally I was stripped down, called worthless, and even a whore, despite the fact that the assault was not my fault. Looking back, there were signs before my PTSD, that he simply didn’t think like most people I’d known. He had an entitled air about himself, like the rules and laws shouldn’t apply to him. There was grabbing, shaking, and pushing. He also liked to speed, and then slam on the brakes to scare me. Once I ended up in a shoulder sling because he slammed the breaks while I was turned begging him to stop the car.

This blog post is in no way a post to bash my ex. He has moved on with his life, and I don’t wish him harm or anything negative. The only time I think about him is when I have to stress out over our ongoing divorce (two years and counting), and when I think about his fiancé and their son. I want her and that baby, to be treated wonderfully, and I never want her to feel isolated or alone. Everyone needs someone who can help them if they need out of a bad situation, no matter how amazing your significant other may seem.

That disclaimer out of the way, there was another man I spoke about who was always referred to as my friend or “friend”. Things with that are pretty much the same. I’ve let him set the foundation for whatever it is we are, and we go with what we are collectively comfortable with. While there is a part of me that desires that stereotypical romance with hand holding, and PDA, there is the part of me that recognizes the important part of any relationship, is the care and support you provide one another. We’re best friends, and while I’d be upset if we were only friends with nothing else romantically linked to our friendship, I would be fine so long as he was happy and found someone to make him happy. I know he feels the same for me.

People tell me  constantly that I need to go on dates. They want me to see other men because they feel that two years with one man, without much traction towards official milestones is ridiculous. There are moments when I have to agree. I want to live with someone for practical reasons. I like to cook, and wipe down dust, and I also like to have someone to go to bed with, and split bills with. What I don’t want is to ask. How awkward would it be to tell someone that we function well together and should give cohabitation a shot? I could easily rent my room out, which would reduce rent at my old place, but ensure I had a place to go back to if things at the friend’s place didn’t work out. Alternatively I would my belongings into storage regardless. I would never move in with a man, and not keep my stuff in storage if there wasn’t a place for it in the home/apartment we were renting.

I need a safety net. My dating life was difficult, but that’s an understatement. Falling in love for me is a neurological state of being. Our brains release chemicals, and those chemicals cause euphoria, relaxation, happiness, and in high enough doses, we interpret it as love. Love is real…but it can be explained by science. I want to feel it, and to know that someone feels it coming from me, too. Even overwhelmed by those chemicals, I know I would still put my stuff in storage for when the chemicals wore off. Anyone can love anyone in that chemical soaked place, it’s when you’re pipes have burst, and it’s 3am, and the carpets are being destroyed, that the love you share is tested.

Even if I wanted to date…how could I? I think I’d mentioned in prior blogs how miserably my dates had been before I met my friend. Do you want to be stared at funny, and have men walk out during the appetizer round? Show up and order no food, but a Sprite. Decline the wine. Just sit there, uncomfortably, sipping on soda and making small talk. I’ve had a lot of men unexpectedly get calls that they had to go to the hospital, back home to do work emails, etc. Eventually I just tried to get them to meet me on dates that didn’t involve food or alcohol. Wasn’t easy.

Yes, my divorce still stresses me out, but I let my lawyer juggle the more stressful parts. It would be easier if I didn’t need to pay to keep insurance, but I do. As we move towards procedures that can caused upwards of $10,000 per infusion, it’s important that I keep coverage. Often times my struggle is perceived as refusal to accept the divorce. All I want is to be divorced. If I could work, I’d have signed already, but I need the support while I’m getting back on my feet.

A friend I had but may have lost, mentioned that lately I seemed to be consumed by my illness, and my special friend. Well, my illness has been flaring a lot, despite doing all that chemotherapy, and my special friend has been supportive but must be getting sick of always being the one that has to be there for me. I wanted this other friend to support me as I navigated alternative options for treatment. Instead I received harsh criticism. I’m too focused on my illness and the guy I’m seeing, I’ve lost myself.

No…I’ve found myself.

I am sick. We can sugar coated it with “spoonie” terms and phrases, but I am sick. I’ve begun compensating for deterioration in my nervous system, but people around me have noticed. Missing buttons on the elevator, falling and being unable to catch myself in time, horrible forgetfulness. Add in the sleeping for 10-12 hours at a time (at least) and you’ve got yourself one flaring chick.

It’s okay that I’m sick!

 I don’t have to be one thing. I can be sick, separated from her spouse, in an unconventional relationship based on attraction and mutual respect despite not using labels, sick, and still be me. Just because I talk about the things that I’m struggling through, doesn’t mean I’m not a student working hard on there M.S. in forensic studies. A lot of forensic jobs happened to be part-time, so maybe I can push to try and get my treatments so I have energy to look into the job market.

If someone where to ask me if I were single. I’d say technically yes. They’d as why, and I’d say I have a friend with benefits, but that it’s sort of a complicated version of that fad. He’s my best friend, and the rest is just bonus add ons. If someone were to ask me out, I’d politely say that I’m not in a place where dating is a good idea. My health needs to be more stable so that I don’t back out of too many events.

My prior relationship was a huge source of stress. Having that weight lifted through this divorce, has been amazing. My body is still recovering from chemo, and new meds, but the less stress I experience, the better. Hopefully the divorce with finalize soon, for both of our sakes!

I’m exhausted, so this post may be a little all over the place. I meant no disrespect to my ex, his wife, and his child. I honestly just want the best for the family they’ve created. I chose not to have children with my ex. We were like oil and water, we didn’t mix, in fact, we were more like thin paper and a burning match. We would come together and ignite, eventually destroying whichever one of us drew the short straw, and wound up as the paper doll.

So to recap:

  • Ex is still in play because the divorce isn’t over
  • Friend is “friend” is best friend, and regardless of where life takes me, he’ll always be special to me
  • Dating around isn’t doable because my stomach and neurological issues make most dates impossible to plan
  • I don’t hate my ex. I may hate some of the actions and words that he’s engaged in, but I don’t hate him as a human being. He’s moved on with his life, and I just wish the best for his fiancé and child

 

Someone needs to invent a Tinder for people with disabilities and chronic illnesses…but we’d have to weed out the folks that have a fetish for that sort of thing.

Revisiting Original Content – My Ex, My Friend, and of course Dating

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