It Will Be Fine – Hugs Toilet

After a few weeks of waiting impatient, my GI appointment finally came. Unfortunately the doctor told me that there wasn’t anything he could do. Apparently there are GI motility specialists, and this doctor suggested that I see a specific GI motility doctor. Of course, that meant my appointment today didn’t offer much. On top of that, the motility doctor won’t see me until I have a referral from a regular gastroenterologist. The good news was that I have seen the GI in that practice  before…the bad news is that I never had the follow up testing because I started chemotherapy.

The GI doctor can’t see me until the end of February…and then I’d need to have two tests done before they would even refer me to the motility specialist. 

Understandably I was discouraged. The receptionist was super sweet, and they’ve phoned in a symptoms consult with a nurse so that they can at least attempt to help me manage the nausea, heartburn, and dehydration. I’ve explained that I don’t vomit because I fight it and refuse to eat or drink. They have me on a cancellation list so I can hopefully see the doctor sooner.

The GI doctor I saw made it clear that, despite what the wait may end up being to see the motility doctor, not to get my hopes up. The treatment options for gastroparesis are slim, and of the drug options, I’m not a candidate for two of the three. The antibiotic option isn’t a good plan due to allergies. The second drug causes neurological issues, and I already have neurological issues, so it’s not an option for me. The third drug works great…but isn’t FDA approved for use in the U.S. yet.

There was mention of the ability to buy it online from Mexico and Canada…

I had asked about IV fluid therapy, but he wasn’t comfortable starting me on that since they wouldn’t be treating me for gastroparesis. I asked if they could treat me for the dehydration caused by my nausea and appetite…and he said they could have if it weren’t for the fact that the cause was gastroparesis.

Yes, without a diagnosis, I’d be given fluids and medications. Since we know what is wrong, I can’t get treatment…unless it’s from a doctor who is a specialist in that diagnosis.

For years I didn’t have a diagnosis for my Behcet’s. I was treated solely based on my symptoms. Now I’m in a situation where the cause is known…but I can’t get treatment. I was given a medication for severe constipation because, to be blunt, I haven’t had a normal bowel movement in months. I take enough over the counter laxatives to treat a herd of elephants, and yet I’m still…well…stuck. There is no guarantee that the medication they gave me will work, either, but they seem to think it’s worth a shot.

Rheumatology still hasn’t said anything about moving up my IVIG trial start date…which would be fine, but they won’t send me for IV fluids either. My sole option is to do it on my own, which my rheumatologist is okay with (and endorses emphatically)…but yeah, I need to find my friend’s doctor who does it. At least insurance will cover it, but it’s starting to feel shady.

I guess the lesson is, as long as your doctor knows that you’re doing certain things to manage your disorders, it’s worth trying ones that aren’t exactly conventional.

Today was definitely not a win, but it wasn’t really a loss either. I’m still lonely, and nauseas, but hopefully I can at least begin to move towards things to help me feel physically better. The emotional work is a bit harder, but still so worth it.

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It Will Be Fine – Hugs Toilet

Gastroparesis:1, Me:0

A few years back, prior to my Behcet’s diagnosis, I was having some serious GI issues. One of the concerns was gastric emptying, so my GI doctor ordered a gastric emptying study. At this point in time I’d had some major issues with constipation, as well as weird diarrhea even though imaging would show I was still constipated. That is a special level of fun, to be in the ER, massively struggling with diarrhea, while doctors remain confused because you’re clearly backed up on imaging. Anyhow, my new GI doctor was amazing, and ordered the study to see what my stomach was doing. During the study, the medical facility screwed up. Despite being told I couldn’t eat dairy, or gluten, they provided me with toast, milk, juice, two eggs, and some peaches. I hate peaches…but without them, I’d have only eaten juice and eggs. I choked don the peaches, eggs, and juice, and was told not to bother with the two pieces of toast, or the glass of milk. This wasn’t the proper protocol, because while they were checking to see how the eggs went through (they had the radioactive tracker on them), you’re still supposed to be measuring the gut emptying with all that stuff in it.

I had only eaten the eggs and some juice.

When they did the testing I wasn’t dealing with extensive symptoms, but I did test just over the time limit. (I think they said you got 90 minutes to empty your stomach, and I took 92 minutes.) The doctor said I had some mild gastroparesis, but was bothered by the fact I hadn’t eaten as much as they would usually feed patients. Sorry, but it definitely wasn’t my fault that I wasn’t fed things I could actually eat.

Now, years later, with my symptoms completely kicking my ass, the have definitely diagnosed me with gastroparesis, and the oh-so-fun issue of periodic intestinal dysmotility. What is that you say? Well, it’s period of time when my intestines decide they’re just not going to move effectively…or even at all.

You want to confuse the hell out of an ER doctor? Go in for abdominal pain, and watch their face when they realize you don’t have any bowel sounds. They tend to change stethoscopes, look at you with a smile and confused eyes, before finally realizing there is no sounds at all.

I’ve gotten used to living in this space where I’m just not hungry. Sometimes I’m even nauseas. During chemo I got breaks where the steroids would instigate hunger, and I was moving things along…but now I’m back to feeling gross and not having much motility. One day a week I’ll have a bunch of bowel movements; Sometimes I’m lucky and get a second day, so it’s less horrendous. I take medicine, both traditional and alternative, to help with the nausea and appetite issues…but this can lead to more problems.

When you eat, but you’re too slow to process the food, things get gross. 

I definitely need to throw up right now, but once I start I can’t stop. All I’ve eaten today is two cups of cereal. The problem is I ate a lot of cereal yesterday, because my GI system had been moving the day before…but it has since stalled. Now everything I’ve eaten in the last 24 hours, is just sitting and it’s painful and nauseating. I made the mistake of giving into hunger rather than following the strict limits I know keep me from this level of pain. This morning I literally thought I’d ruptured something because I couldn’t stand straight. It was so bad I gave my dog to my roommate because I didn’t know if I could continue to walk him today and tonight.

On the 1st of December I’ll see my new GI doctor, and we can hopefully sort out treatment options. Personally I’d love to just swap to liquid food and not have to think about eating for enjoyment anymore. I just want to get adequate nutrition without having to think about it. We know a few things contribute, including a blocked celiac artery, and poor blood flow in general. I also have ulcerations that can tie things up. The diet I need to follow excludes so many nutrients, though. I would love to eat a salad. It sounds so insane, but I definitely miss salads!

Fresh fruits, fresh vegetables, meats, fried foods (except for french fries for some reason), dairy, and anything high in fiber? They’re all not tolerable. Fruits and vegetables are definitely the worst, and anything high in fiber.

Today will be spent sipping on water, enjoying my carafate, and wrapping my abdomen in a heating pad. My abdominal pain actually making me short of breath, and my eyes are watering because I’m trying so hard not to throw up. This is the reality of GI Behcet’s. I just hope I never have a rupture, or full obstruction. I’ve had a few partial obstructions, and pseudo-obstructions. I don’t go to the ER anymore unless the symptoms prevent me from urinating. Yes, I’ve been so blocked up, I couldn’t even pee. That was a horrible situation because the small town ER didn’t really know what to do with me. They kept giving me enemas, and all I was doing was bleeding as the enema liquid came out…I also was throwing up some gnarly stuff until I was dry heaving. That was enough to make me try to avoid the ER after that.

Keep your chin up folks. Even when you’ve had tubes shoved in horrible places, things go on. Today I’m grateful for the people who help me while I struggle. I’m grateful I found a free version of my textbook, at least I think. I’m grateful for my dogs. I’m grateful for friends who bring my dog  home for Thanksgiving so he can be spoiled. I’m grateful to be crashing somewhere that doesn’t smell like my apartment smells.

Find the things you’re grateful for.

Gastroparesis:1, Me:0

Things You Wish Came With Chronic Illness…and My New Treatment Plan

I’ve been in bed most of the day, though I do count my trip to take the dog out, and my shower, as huge successes. Currently I’m realizing that I wish my Behcet’s came with a care package, or a monthly subscription box of surprise necessities. The following would seriously be on the list:

  • Comfortable Blankets
  • Fleece Socks
  • Heating Blanket
  • Heating Pads
  • Ice Packs
  • Naproxen
  • Serenity Essential Oil (DoTerra)
  • Peppermint Oil
  • Maid Service
  • Pedialyte Pops
  • Carbonated Water
  • Amazon Gift Cards (so much to read!)
  • Pajamas
  • Comfortable Sheet Sets
  • Wheelchair Gear

I’m sure I could think of more things if I didn’t have an enormous headache. The cause isn’t clear, though I suspect a combination of factors. For one thing, I’m stressed. Financially things in my life are just a total wreck. This divorce has dragged out, as has my application for disability. Without a settlement regarding alimony, I don’t know how to set a realistic budget. Currently I’m not getting enough to survive, and to make matters worse, my book stipend has disappeared and my food stamps have been challenged along with my electricity discount.

Then there is the horrendous weekend I had. Don’t get me wrong, there were good parts, but being reminded repeatedly that your illness makes you different in negative ways, isn’t fun for anyone. Now my vape charging cord is missing. It could just be at my friend’s place…but it wouldn’t be missing at all, if the negative Nancy who thought it would be fun to rub my illness in my face, hadn’t dug through my backpack. I resorted to using my little bowl because it’s all I had, and my lungs quickly reminded me that they are not okay with that option. This has all resulted in my not having access to the vape. I rush order batteries and a charger that *may* work, and it’ll arrive tomorrow…but in the meantime I have to rely on less reliable options for my nausea. Nothing really works for the pain so I’m just living with my heating bad glued to my belly.

People think I’m all for the legalization of Marijuana, but what they don’t understand is that it’s a complicated issue for me. I do think that it’s relatively safe, compared to alcohol, but unfortunately legal recreational use means I’ll never have it covered by insurance. I have an appointment with a gastroenterologist, and I’ll ask him about Marinol (which is a drug that has synthetic THC). The issue with Marinol is that patients have reported it isn’t as effective as actual Marijuana. Not a total shock given that it’s only the THC portion, and not the other ingredients found in the actual plant.

This brings me along to my treatment plan. My rheumatologist talked with the big doctor at NYU that I saw just once, and the current plan is to increase my Mycophenalate by another gram…meaning I’d take 3 grams daily, either in three separate doses of 1000mg, or two doses of 1500mg. In case I haven’t been clear in prior blogs, I’m not a huge fan of increasing the Mycophenalate. When something doesn’t work, after a period of time, I get antsy. My neurologist wanted me to get more chemotherapy, because neurologically there is a concern that permanent damage could occur. They’ve increased one of my seizure drugs, Vimpat, and I’m already beyond the max effective dosage of my Keppra. If I’m still dealing with GI issues, neurological issues, and other signs of seriously active disease, then we’ll move to immunoglobulin therapy, IVIG. Both doctors feel that plasmapheresis would likely be ineffective with my current manifestations.

Personally I’d like to do IVIG immediately. I understand the need to go through less invasive treatments first…but this whole being miserably sick thing, gets old. I have an appointment to see a well rated gastroenterologist on the 1st of December. Even though he’s well rated, my expectations are guarded. For years GI doctors treated me like I was a psychiatric patient. I was diagnosed as anorexic and bulimic, despite repeat testing that showed blood in my bowel movements. My gallbladder actually began to die in my body, it was so severely diseased. During my laparoscopic surgery, they almost had to switch and do a full open procedure. The surgeon was concerned that the organ was so badly diseased, it wouldn’t hold up to laparoscopic removal .

Yes, you read that correctly…my gallbladder was so diseased, they thought about cutting my abdomen open to remove it, because they thought it was going to fall apart inside my body.

If you’re wondering, I have a great pain tolerance.

The gallbladder fiasco aside, there has been a lot of shrugging off of symptoms over the years, along with lost medical records. I’ve had far too many endoscopies and colonoscopies. I don’t want more. We know I have GI Behcet’s. We know I get bleeds. We know that I’ve had ulcers in my lower GI tract. We know I’ve had stomach ulcers. Why the hell would we put me through another prep, put me under sedation (which is an issue for me), scope me, and ultimately end up with inconclusive results? The nausea is from gastroparesis, but that testing wasn’t done properly either. I don’t know about the rest of society, but I really don’t want to eat more radioactive eggs, and I definitely don’t want to eat the entire meal you have to eat for the testing.

What happens if you throw up during the gastric emptying study? Do they make you eat more?

I am keeping an open mind, I just really hate the whole new doctor process. Explaining to the doctor that, yes, I really do have Behcet’s. The gluten factor is an issue as well. Some doctors are okay with someone who wasn’t diagnosed with Celiac, avoiding gluten, while other doctors are absolutely disgusted by people who don’t have Celiac avoiding gluten. I did it on my doctors recommendation, it worked for some of my symptoms, so I have continued with the diet.

My biggest GI doctor concern is how he’ll handle my use of Marijuana. I would eat 1/3 of what I currently eat, if it weren’t for cannabis. If you include how often I’d be vomiting, it would probably be less than that. I credit marijuana for helping me drink water, too. Gastroparesis is no joke, and when your intestines join the dysmotility party, it’s extra miserable. Warning: TMI information regarding poop ahead…read at your own risk.

I’m lucky if I have a bowel movement one day per week. Lately I’ve had to rely on laxatives to even have one movement per week. Even though it causes bloating and nausea, I’ve started eating dairy to get things moving along as well. The problem is I still don’t go daily…instead I seem to get one day of horrible cramping, and I got a lot. It isn’t diarrhea, but I go several times, and each time I get sweaty and w ant to throw up. My body seems to suddenly become an overachiever. It’s the lazy student, who procrastinated, but then decided to try and graduate with honors.

I will literally go days with only a few gurgles to suggest my stomach and intestines are even moving at a snail’s pace, sometimes I’ll go almost 24 hours without a sound at all. Then, on P-Day, my system goes wild, and the pooping commences

Aren’t you so glad that you’re reading this blog?

GI will weigh in on the treatment plan, but I’m hoping to get a few options for managing symptoms. Critical for me would be IV fluid therapy. Just going in 2-3 times a week, to bump up my hydration, would really work wonders I’m sure. I’d also like some better nausea management skills. It would be great to get IM options for some of my medications, but dosing makes that impossible. I don’t want a port, at all, because they terrify me, but moments like this make me think about how nice they can be. IV nausea medication would change my life, but the cannabis is probably safer!

Right now I’m in Victoria’s Secret sweat pants, some random free t-shirt, and fuzzy socks. I’m covered with a gorgeous fleece blanket, both dogs, and I have a heating pad across my abdomen. Bonus sick-chick points for the literally seven pillows I have in play to keep this blog post, and myself, together.

There is no correct treatment plan for all patients with Behcet’s. We all have different expressions of the disease, different tolerances for the various medications uses to treat the disease, and different personal views on being sick. Right now I’m just repeating that to myself. I want there to be a linear path I take towards wellness, but that isn’t how illnesses like this work. I know I need to stay positive. I can’t control the various things the disease decides to do, but I can combat them with the right tools. One of the biggest tools in my arsenal, is a positive attitude.

Things You Wish Came With Chronic Illness…and My New Treatment Plan

I Can(t) Do It!

It was a rough weekend. Despite doctors’ orders (yes that is plural), I pushed myself and went to the zoo, hung out with friends, and generally pushed myself too far. My gastroparesis had been brutal. When you have plans, but not enough nutrition or fluids, those plans become more complicated. Throw in the added benefit of an autonomic nervous system that doesn’t know how to actually regulate things, and you get a disaster. The first day/night with friends ended with me watching everyone eat, while I sipped on water and ended with me stumbling home looking drunk because my blood sugar was painfully low.

The next day was the zoo, and while various doctors have requested I used a wheelchair during such outings, a new friend became overbearing with her questions. Did I want it? did I need it? Wouldn’t it be easier to get one in the beginning? Whether or not she intended to be condescending, the various questions regarding how I was feeling, along with her actions, made me feel like a complete invalid. Did I actually need a wheelchair to navigate the zoo? Absolutely. Was I willing to admit this? No way.

I did make it the entire day without a wheelchair, but it wasn’t easy. I opted to forgo food, minus two packets of mini-cookies. I drank an Icee because I knew it would get me both water, as well as sugar. That Icee was probably the only reason I lasted the entire day. My good friend was impressed by my ability to push through and make it through, while the vibe from the new friend was less than stellar. I didn’t really have time to process her confusing judgment of my state of well-being. I was seriously hurting.

As I sat in the car, I felt my muscles give up. Somehow I managed to get out, to the restaurant, where I again watched everyone eat, and then I managed to get into an Epsom salt bath. If you’re wondering, this was great for my aching muscles, but terrible for my autonomic neuropathy. Luckily the apartment was super cold, so I didn’t have too much of a struggle.

So what was the correct course of action? I should have used the wheelchair, or not have gone at all. It’s hard to admit you can’t do certain things, at least without assistance, so sometimes those of us with chronic illnesses end up making ourselves sicker. Today I’m miserable. I had to eat more to account for the calories burned at the zoo, and the muscle tremors that developed after, but my stomach can’t handle it. Worse? The lactic acid build up is making me feel even more awful. I wanted to show someone that I wasn’t an invalid, that I could do what everyone else could do.

I think I also wanted to show myself I could be “normal,” too. 

Take a break. Say no. Use the damn wheelchair. True, it may suck, and it may make you sad or angry (or both), but it’s better than brutalizing your body. There are times when pushing yourself makes sense, and there are other times when you just have to take the loss for what it is. I am sick. I have autonomic neuropathy, and Behcet’s, both of which contribute to my gastroparesis and intestinal dysmotility.

I was thrilled today when my stomach grumbled…but my intestines decided they weren’t going to play along. It ought food sitting in my stomach was bad, but I’d forgotten how bad it feels for food to sit in my intestines or colon. I left looking seriously pregnant, and with horrible stomach pain. This is just my life when I don’t play by the chronic illness rules. In no way am I complaining, or asking for sympathy…I just know that this is something other people with chronic illnesses need to hear.

When you’re put in a position with someone who judges you because of what you can or can’t do, the medications you take, or your illness in general, find a way to politely explain the reality of your situation. If they fail to respect you after that, then politely remove them from your life. There will be people who judge you, push you beyond what is safe, or even try to take advantage of you because you’re sick and they perceive you as weak. Don’t let people who don’t respect you, or accept you, run your life. 

I am who I am, and I have what I have. Treatment options are still being evaluated. Picking on me when I just finished a steroid taper, and can’t eat enough to prevent chronic hangry-ness, is really a bad idea. I am grateful that I managed to keep it together, though, because the urge to fly off the handle was strong.

Truth be told, I’m extremely sensitive about my health. I don’t like feeling weak or vulnerable. I can logically accept the reality of my situation, but it doesn’t mean I’m prepared when people are hostile or demeaning. Even if I were to see a list of the good things I do, and the good things about myself, I would feel as though my health eclipsed all of that good. Even though I don’t define myself by my illnesses, I feel as though my own identity gets lost behind what my illness pushes to the forefront.

I can go out, but I can’t walk long distances without assistance.

I will gladly go with you to a restaurant, but I cannot eat food. 

I can stay up late, but I’ll need to nap and sleep in. 

I can be your friend, I just may not always be ready to go at a moments notice.

The biggest thing is that I am still myself. I like to volunteer, read, and look for nerdy t-shirts. I love my dogs. I’m a student. I’m a nerd. I’m an introvert that likes live music. I am so many things, but I’m also sick. Perhaps I haven’t fully accepted the reality of my illness. Even if I were to go into remission tomorrow, I would still have what I have. I would still need to be vigilant about what I am exposed to, and any potential symptoms that arise. My wheelchair won’t be something I love, but it will be something that allows me to do the things that I do love.

So, if you’re struggling today, know that even those of us who look like they have a handle on things, struggle, too.

You are stronger than you know.

I Can(t) Do It!

Fun Fried

So my friend drove us up to LA on Wednesday, and back on Thursday. We left San Diego at about 4pm, arrived at the theater around 7:20, and the show began at 8pm. Afterwards we had a 30 minute drive to his parents place, plus a stop at McDonald’s to grab some food. All I’d eaten that day was four pudding snack packs that morning. I made sure to drink some Sprite during the show to keep my sugar up. I had a few fries, but ultimately couldn’t eat much. On Thursday morning I acquiesced, and ate maybe 2 eggs. It was a struggle. I couldn’t drink much water accept to take my pills. On the 3 hour drive back I made sure to drink some diet Pepsi to get my caffeine fix (I get headaches without it), and some water. Both were difficult because the egg was just sitting in my gut like a rock. When we got back to San Diego, I was sort of on autopilot. Some stressful things had happened with my roommate, and I was trying to just remain calm about all of it by detaching myself from all of it. That kind of came to an end when I stood up to get my bag, and the world went spinning.

Two(ish) eggs, a diet Pepsi, and some water, does not sustain you for 9(ish) hours…especially when you take a second to realize you’ve consumed nothing with actual sugar in it. Oops.

I managed to get some Gatorade in, and a few bites of a rice crispy treat bar, sat up, got up, and went into my apartment where my small dog immediately began alerting. He wanted me to sit down, immediately. I obliged, and forced myself to choke down the rest of the cereal bar. Normally I love them, but I wasn’t hungry. It was literally just something I needed to do. I was running on 5 or so hours of sleep, no sugar, and I was edgy.

Now, I’d like to point something out…I do not regret going. The show was absolutely amazing, and the seats were front row center. All the physical suffering after the fact was 110% worth it. The issue is just not knowing how sick you’ll be afterwards. I knew I’d be tired, but I hadn’t expected this level of exhaustion, soreness, or dizziness. I could use a liter or two of fluid, but I’m still waiting to see if there is a way to have it done at a doctor’s office rather than going into an ER or urgent care. (I would go into urgent care if needed, but I’m trying to avoid as many germs as possible right now.)

I’m also having to process the new treatment plan. We’ve increased the cell cept, again, which sucks given my already persistent GI issues. If I don’t see adequate results by January, we will look at starting IVIG. That is, of course, if I’ve managed to keep my insurance. Plasmapheresis is not an option, at least at this point in time, per my rheumatologist, and the rheumatologist at NYU. I am doubtful that the increased dose of cell cept is really going to make a difference, given that 2 grams hasn’t worked, but why not give 3 grams a shot. At least I’ve got some extra padding to make up for the weight I’m losing, but it’s still not great to see your body give up like mine has.

Do the things that you really want to do, as long as you’re not putting yourself in mortal danger. I’ve started realizing that trying to do everything is a bad move. I just agree whenever someone suggests something, and I end up with a daunting schedule that I know won’t be doable. Then I find myself crying and stressed because I feel like a failure. I end up feeling like I’m letting everyone down, despite also knowing that I’ve given it my everything.

My GI appointment is on December 1st, though, which gives me some hope. The lack of motility in my stomach and intestines has really started to create a lot of problems, as has the nausea. If I do eat, I know I’ll pay for it with pain and nausea. The only way I can have a bowel movement is to take a lot of softeners and laxatives. I don’t want to be dependent on them, but by day 4 or 5, I start to worry I’ll end up with a pseudo obstruction again, and an enema. ER enemas are not my friend…insert enema enemy jokes <here> haha.

I don’t regret Hamilton, but I do regret committing to plans I can’t get out of this weekend. It’s a huge struggle right now to just get up and get in the shower because I’m honestly that exhausted. I also know I need to take my cell cept, but I don’t feel like gagging all afternoon when I need to be packed and out the door in about 4 hours. This is the reality of chronic illness. You can be positive most of the time, but sometimes it’s okay to just look at what you’re dealing with, and say, “Wow, this really sucks.”

I also may have forgotten to do homework this week…which I just realized as I was writing this. Time to shower, pack up, get my wheelchair, and find a way to push through the minefield that is my current situation. I just can’t wait until Monday, when I can catch up on some sleep and focus on myself.

Fun Fried

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

Dating a Sick Chick

Lately I’ve been thinking a lot about the future, probably because it’s the holidays, and also partially because of the relapse. Prior to relapsing I actually had a lot of hope that I could date, find someone, settle down, and have a semi-normal life. I’ve been married, and while I would get married again, it isn’t a priority for me. I just want someone that I mesh well with, who makes me happy, that I can make happy, too. I had plans for my career, and life in general. If there is one thing I tend to do, is overthink, and over mentally prepare.

Then life was like, “Hey, how about you try to do everything you want to do, but with this busted up body instead?”

Yeah.

My first thoughts were about school and work, because I’m an independent person. I’ll deal with the school situation more in depth in a later blog. The last thing I started to think about, was dating. I wanted to find someone I could at the very least, get along with, and live with. My heart has so much to give, but now I was left wondering how it would pan out as my health issues shifted.

First and foremost, the wheelchair situation. Right now, I’m using a walker periodically, or my dog with a harness. Neither works super well since I have coordination issues that include a foot drop. When I walk without assistance, I look like a drug zombie, who has pooped her pants, and also appears to be shivering from being cold. Even with assistance, I have to take a ton of breaks, and I still look ridiculous. I fell a few times last night, and it was super embarrassing. One guy mistook me for homeless (I was wearing jeans and a decent shirt, but whatever). Another group thought I was drunk. I just took a deep breath and reminded myself that the wheelchair process had begun.

But is a wheelchair going to draw less attention? Won’t people see me and look away? What guy is going to be able to see past the chair?

I know there are plenty of people in wheelchairs who have significant others, but how does one find these people? I also know that I’m lucky that I can walk, just not well enough to do it safely. The chair is for those weak days, or relapses like I’m in now where walking is significantly challenging. I’ve discussed the “friend” I have, and while he has said the chair will just increase the things I can do, I still feel as though it’s going to change things. We will always be in each others lives, he’s truly my best friend, but I don’t think he looks at me as dateable. He’s seen me do chemo, fall down, relapse, seize…I’ve pretty much ruled out my viability as a long-term partner.

So who would take all of this nonsense on?

I’ve been told that I shouldn’t date, because it isn’t fair to put someone else through dealing with my illness. This is something I always fought back against, since it would be the other person’s choice to be with me. Lately, though, I’ve wondered if that statement was also meant to protect me. I could find someone, who is wonderful, but when things shift with my health, will they still be there? Perhaps the suggestion that I shouldn’t date, is more meant to protect me from being hurt when I’m the most vulnerable.

Is there a right way to date as a sick chick?

I don’t know. One thing I always am, is up front. If I meet a guy for coffee or dinner, I warn them ahead of time that I won’t be super hungry. Usually I order a drink, but I avoid ordering food, or I order something small. Then I explain why I’m not eating it. Some guys take it in stride, others have faked work emergencies and left. (I’m not lying about the second part…I was walking home, and he was walking to his car, in the same direction, but he didn’t even say a word to me.) I could have called him out on it, but I didn’t. I was polite. waited to see if he’d call or text, and when he didn’t, I let it go. For future reference, though, this isn’t the best way to treat the situation. At least finish appetizers, say you enjoyed the company, and hell, at least send a text that said you had fun, but that you didn’t feel a connection. Tell me I’m a great person, and I’ll survive.

Sick chicks, don’t be ashamed of your medications. I will take them in front of people, and if they ask, I’ll tell them what I’m taking, and even why. It used to be something I hid, or tried to hide, but that inevitably led to awkward situations where I was forced to explain that I wasn’t using illegal drugs. Yes, that has happened. When you sneak away to take pills, people get suspicious.

How do I do this in a chair though? I can’t go to clubs, can I? What about live music at bars? Is there a spot for me? Will people look at me funny? I’m used to being tall, 5’10”, how will I navigate a world where I’m sitting down!? All of these things are flying through my head, but they’re flying through my head while I lay in bed and type. I couldn’t do anything this weekend because of the ataxia. I want to take the dog to the park, but I can’t  because I don’t want to fall. Walking makes me sweat, even though it’s cold out, and the dizziness comes on so fast.

The sicker I get, the more I make peace with the devices I’ll need to get by…but the more questions I get about my actual future. Obviously my focus is on myself, and my treatment options, but as a divorced woman in her early thirties, I’m going to be thinking about the future on some level. I want to come home to someone, to cook for someone, hell, even to clean up after someone (though I have to amend my usual tactics for cleaning given some of the limits I’ve developed).

For those reading this, I’m curious how you cope with dating with whatever chronic illness you may have, or if you’re the one dating someone with a chronic illness, how it impacts you. I also want people to know that there is no right and wrong way to approach the act of dating while sick, as long as you’re not doing anything to harm your mental or physical well being. Choosing not to date is okay, if it’s something that doesn’t make you depressed or angry. I know right now I’m not actively seeking dates, other than those including my friend, but even that is something I think about critically. I want to make sure I’m not taking over his life with my growing limitations.

It’s not an easy thing.

We will see how things go once all the devices and medications have been put into place. I really just want what a lot of people want at this stage in life. The problem is, I have a less clear path towards obtaining that goal.

Dating a Sick Chick