Cytoxan: Round 2

Chemo brain is a real thing. 

I had my second round of Cytoxan on Monday, December 18th. After the last round a few things happened that changed the treatment plan slightly. First off, I was having pretty significant symptoms. My doctor ordered blood work for two weeks after the first treatment, and discovered that my counts were lower than necessary for treatment, and in reality, just too low in general. Instead of increasing the dose for round 2, she decreased it. She also was able to convince my insurance to cover Lupron, a drug that may increase my chances of remaining fertile post-treatment. I’m honestly shocked my insurance was willing to cover it, but insanely grateful. There are no guarantees either way in terms of fertility and Cytoxan. If you look at the dosage and odds, statistically sterility is common, but you never know if it’ll be something you have to go through or not. I didn’t want to take that chance. As long as the hormones in the Lupron weren’t going to make the chemotherapy less effective, I was willing to do the shots once per month.

People have told me that wanting children of my own someday is selfish. What if the child is sick like me? With all the autoimmune disorders in my family, how could I possibly want to have a child who could be ill? If I want to be a parent badly, I should adopt. Don’t I worry my body can’t handle pregnancy?

To all of those people: I’ve thought about all of those things! It terrifies me that I could give life to a child who has to suffer through the things my family members and I have suffered through, but there is no guarantee that my child or children, will be sick, too. As for the suggestion I should adopt, I’d love to, but it’s expensive. My health issues preclude me from being a good candidate. I am terrified my body can’t support a pregnancy, but that’s why I’ve taken a billion and one precautions to prevent it from happening. If and when the time comes for me to start a family, it’ll be extremely coordinated. There are no surprises happening here, because I’m responsible enough to recognize the risks. (I also don’t want kids this moment. I want to get healthy, and kick around some things on my bucket list dammit!)

So, back to round one…the low blood counts were accompanied by epic bruising, and hair loss. It came out oddly, as if it were shedding evenly, but then again, a few spots were shedding worse than others. If I had an itch, and scathe it, I’d end up bursting the capillaries beneath that area of skin. I was tired, nauseas, and none of the food I wanted tasted right. My mouth peeled and bled. I was in enormous pain. It sucked.

Round 2 has, thus far, been similar, but more mild. The fatigue is definitely worse than the last time, but the others symptoms have come predictably in order, without being as severe as they were during round 1. The abdominal issues are constant, and they suck, but I’m just sort of cramming calories in when I can, and letting my body do the talking. The mistake I made during the first round, was thinking I could coerce my body into doing what my mind wanted to do. A trip to the ER made it clear I couldn’t push myself.

This isn’t how Cytoxan is for everyone! 

My dad went through Cytoxan therapy, and didn’t miss a day of work. Never threw up, never had side effects that side lined him the way I have. Some people end up in the hospital. That’s just how chemotherapy is. Everyone is going to have a different level of reaction. The amount I received, for my weight, should have been manageable. For whatever reason, my body couldn’t handle it, and things started to go haywire. It sucked, but at least we’ve founds something that can go after my immune system.

I live in California, where marijuana is now just flat out legal…though you need a medical card to buy it. Instead of trying to fight through the nausea with Zofran and Promethazine,  I decided to really give pot a chance this time around. I have never been so grateful for a plant in my entire life. While the prescriptions work, they take longer to get into my system, and they aren’t as effective as the marijuana is. It’s just a flat out fact. I need to find the right strain, because right now a lot of them make me sleepy, but the facts still stand.

Today I decided I could easily live in a studio apartment, even with both dogs. Having spent way too much time confined to my bedroom, it dawned on me that having a space slightly bigger than this, with a divider for the living area, would be ideal. Smaller living space = less distance to travel for medications, food, water, etc. I don’t know what is going to happen when the lease is up in a couple of months, but I’m keeping my eyes open. Moving 5 months into chemotherapy would most definitely suck…but my roommate doesn’t seem to be in love with having me as a roommate, and I can’t blame him.

I am not a bad roommate, I’m just a spoonie who is learning to listen to her body and respect its limitations. He’s not a bad roommate, but he’s very outgoing and extroverted, with an aversion to blood and illness in general. I thought we would mesh on a science level, and maybe we could have, but it didn’t work out. We’re basically two people who aren’t friends, but live in the same place. It would have been nice to have built a friendship, but we just didn’t.

Round #2…ugh. At least I slept through most of it. After a ton of drama courtesy of my ex, there was very little sleep the night before. I ended up getting some Ativan for nerves, and that combined with the other meds knocked me right out. It was absolutely glorious. I needed the sleep, and more importantly, I wasn’t hyperaware of the changes in my body. (I tend to get flustered when my heart rate fluctuates, or nausea creeps in, instead of just accepting it. I don’t mean to get flustered, it’s just an uncontrollable response.)

Today is Friday, and my mouth hurts. A lot. It’s dry and peeling, no matter how much I drink. I know it’s the skin turning over, but knowing why it’s happening don’t make it suck any less. It’s kind of a cruel chemo trick…the second your nausea starts to fade, and your hunger creeps in, your mouth will be too sore and gross for anything solid!

Cytoxan: Round 2

Cytoxan: Round One

It’s Thanksgiving, which was never a favorite holiday of mine. As a kid we had church donated food, and it was good, but it was also a reminder of what we didn’t have. Then there was my issues with eating due to anxiety, and then by my teen years I was having Behcet’s symptoms, but of course, it wasn’t acknowledged until my twenties. In any event, I have always looked for ways to duck out on this particular holiday. When I worked retail, I’d volunteer for dinner shifts, same for when I worked in a hotel. The last two years, however, haven’t exactly worked out simply. Last year I had knee surgery two days before Thanksgiving. This year I had my first round of chemo on the Monday before.

I went in optimistic. My thought process was that I’d feel sick Monday night, Tuesday, and maybe some of Wednesday, but by Thursday I’d just be tired and a little hungry. That hasn’t been the case. During the infusion I started to feel nauseated and honestly thought I was going to both pass out and throw up. I had the guy grab a nurse, mostly so he wouldn’t see me toss my cookies if it happened, but they stopped the medicine, gave me more fluids, then continued, and it was fine. I just felt very tired. (I had received Ativan due to muscle spasms in the beginning. They claimed it was anxiety, but I’ve had them for years.)

Each day has been worse, and it’s because I’m not drinking enough water. It’s hard to drink water when even the smallest amount of food or liquid trigger your urge to throw up. I’m not capable of ignoring that signal from my body. Some people can power through, and be like I’m nauseas, but I’m going to sip on this or that…not me. My mind is firm. If I’m nauseated, nothing shall pass.

I had Zofran with the infusion, then my usual at home dosages of Zofran, but it wasn’t enough. I used some promethazine to switch it up, and had some relief, but mostly I just slept. The problem with that is, while I need rest, I’m not getting fluids if I’m asleep. I finally asked a friend to bring me a strain of marijuana that was good for nausea. I wanted something with low THC, because I didn’t want to feel high, but enough that I wouldn’t feel like my stomach was going to kill me.

It worked.

I went from stuck in bed, to being able to slowly walk my new dog around the block. I didn’t feel 100%, but I felt so much better than I had. Today I used it again, and I may just have to smoke regularly to get through the next few days. I hate doing it, because it makes my mouth and throat dry, but I have lemon lozenges for that. I just wish regular meds worked for me. Then again, why are we so against marijuana when it clearly works wonderfully on illnesses like mine? Why am I denying myself medication that could make me functional. Make me able to get out of this damn bed and do something? I used it for what today? Water and putting the dishes away. Seriously.

My mother is in denial. She believes what her friends have told her. How I shouldn’t feel nearly as sick as cancer patients, and how the side effects for me are lower because the dose is lower. She’s wrong. The dose is the same, the frequency is different. I will feel shitty because I am nuking my body! It’s frustrating because we don’t really have a relationship beyond pretending, and now she’s attempting to become involved when there really isn’t room for her nonsense.

Side Effects

  • Nausea
  • Fatigue
  • Dizziness
  • Headache
  • Body ache
  • Sore throat
  • Abdominal pain
  • Yeast infection?
  • Bleeding? <—

So there is a really bad side effect that can cause severe bleeding from your bladder. It’s bad. I don’t have that, but I am spotting which is odd. I do have a history of getting my period when I’m not eating enough, which I’m not courtesy of the nausea, so I’m guessing the existing yeast infection has melded with the spotting to produce what looks like a bizarre period or some sort of weird bleeding situation.

In any event, I’ll take bleeding if it’s period related, because that means that I’m still technically fertile. Of course it’s old blood, so maybe it means nothing. Maybe its’ my ovaries bidding a final farewell to a world they didn’t get to know. Maybe I’m just melodramatic because my life is in a major upheaval and I want things to even out so that I’m not constantly waiting on pins and needles for the next horrifying development.

I’m supposed to be done with graduate school…if I’d never taken time off…it’s a depressing realization but it’s not like I can do anything about it, There is no way in hell I could manage classes like this, so I’d have to miss 1/4 of my next three laboratory classes, which means I could potentially graduate, but not with a good grade. Worse, I’d be exposing myself to a massive amount of germs while I have no immune system to fight them off.

Life is what it is, though. I make decisions because I have to make decisions. It’s not like I wanted to have chemotherapy. I’d hoped for some sort of IVIG therapy, or something biologic, but because of my resistance, and the likelihood I’ve developed antibodies to TNF blockers and other drugs, this was the last resort.

The whole irony of this is of course the nausea. My severe GI Behcet’s is what triggered the IV medication route, because oral routes weren’t working. I was pretty much inflamed from stomach to colon, and they knew periodically there had to be ulcers because of the bleeding. So now I’m on chemo, because I basically have severe systemic Behcet’s. Eyes, nerves, stomach, it’s all involved, and oral medications that are strong enough are too strong for my stomach to process. Chemo may make me sick, but the medication is still in my system.

So yeah, I’m tired. I’m feeling like a waste of space and time. I’ve never loved Thanksgiving, but it’s hard because I want to be normal again. my next treatment is December 19th, and honestly, I really want to do something with someone for Christmas. I don’t want to be alone. I don’t want to be left out. I don’t want to be me, or at lest the version of me that is stuck in bed sleeping and attempting not to throw up. It doesn’t have to be the guy, though that would be fun, it just has to be someone, anyone, who wants to see me that day. (Let’s be honest, the guy would be fun, especially since he’s out of town now, and will be again the first week of December.)

Now, before people judge me, “You’re trying to date while having chemo? Focus on getting well!” <—-

I am focused on getting well. The guy is the guy because it is what it is, I’m letting him choose, and while it isn’t always easy, in the end, I’m accepting of whatever comes of it. Plus if he can’t handle sick me, then the doesn’t deserve not sick me. My ex couldn’t handle my sicknesses, neither could my mom, so I’ve learned to expose people to the reality of who I am early on. Friends, potential people to date, doesn’t matter. I have this, it changes how I do things, take it or leave it!

But I still wish I didn’t have to do that.

See, the reality, the true, no bullshit reality, is that most of us, deep down, want that quintessential American dream. Nice place to live, maybe few kids, traveling, having someone to come home to, blah blah blah. I hate that in my core, that’s what I want, too. I want someone to go travel with even though I hate flying. I want to knock items off my bucket list, save up, and buy a house or condo. I love the idea that I could find someone who would be okay with buying a condo instead of a house, since my ex was completely against it. I want kids some day. Marriage isn’t important to me, which is an odd development, but I’ve realized that the legality isn’t what makes it important to the two people involved, it’s what makes it legitimate to the people around them.

Sitting here, nauseas, in a headscarf crafted by the guy’s mom, I wonder what my life will actually be like. Will I travel? Maybe it’ll be alone. I try and come to terms with who I am, who I want to be, and the reality of my potential future. Most importantly I close my eyes, and I whisper internally, “remission,” because until then, I can’t accomplish much. Does’ mean I won’t try, but it does mean accepting the reality of limitations.

Cytoxan: Round One

8 Days Later – the Hospital Stay

On the 15th I had an MRI appointment. I woke up that day with wobbly legs and figured it was good my neurological symptoms were acting up. Maybe this would explain to my doctors what was happening with my body. I knew I was walking weird, and the heat wasn’t helping things. By the time I got to the hospital they had decided it would be better to wheel me to the MRI than have me walk. Afterwards I was sent to the ER by my neurologist, and sent home without an explanation. I was given a walker (with no wheels), which just felt like a convenient way to break teeth. A friend drove me home.

On the 16th things got worse. My arms were impacted and my hands felt like someone was mashing on my funny bone. By the end of the day I called the neurologist’s office, and the nurse said to return to the ER, and have them call the doctor’s personal line. I obtained a ride, somehow made it into and out of the car. I was in agony. The ER didn’t do anything. The doctor did a basic exam, notice I had out of control tremors, no muscle control, an when he did get a hold of my doctor decided to send me home anyhow with instructions to follow up on Thursday (two days later) since I already had an appointment.

My roommate picked me up and had to load me onto a luggage cart to get me up to our apartment. A friend came over and helped me undress and shower. I spent Wednesday in bed, surrounded by food and drinks. I let the dog out on the porch twice, falling hard once while I did it. In typical Behcet’s fashion I felt like I was dying without a reason. You get anxiety, like maybe this is permanent, maybe this is the lesion that ends your ability to walk, or see, or do something you’ve come to take for granted.

On Wednesday night my friend (the guy) came over and was pretty much ready to take me to the ER that moment. I insisted we stick with seeing my neurologist the next day because I refused to go to another ER and be sent home to to wait for the impending appointment. By this point I couldn’t open anything but my thumb and pointer finger. My core was starting to twitch with the responsibility of holding up the rest of a body that refused to coordinate itself. I would lay calmly for long enough and the tremors would stop, but I would feel tingly and floaty. The second someone asked med to move, or moved me, the shaking and tensing would begin again. The neurologist immediately seemed to be out of his league and shocked at the extensiveness of the movements. He told me initially we could try a medication used for Parkinson’s but that he wasn’t sure it would work. by this point I’d been constantly moving for 3 days. I broke down, the sobbing started which made the shaking worse. I couldn’t feed myself. I couldn’t walk. He told me the medicine would make me vomit, which made me wonder how I would handle the task of sleeping around the toilet that night.

I was sent to UCSD ER immediately.

The first ER doctor I saw wasn’t too big on the whole admitting me for sure process. He said that of course my doctor wanted me to be admitted but it was up to their neurology team to decide. The hospital was full, with some patients waiting in ER beds for 54+ hours just to get a hospital bed. I didn’t care. I was done. My body hurt. I wanted someone to fix it or stop it. My friend (the guy) stayed with me until neurology 100% said I wasn’t going home. I may have to spend the night in the room in the ER, but I wasn’t leaving the hospital until I’d been fully worked up. Another friend came by with my original MRI even though the hospital planned on doing a repeat exam as soon as possible.

They moved me that night to another ER room with a hospital bed, and a TV. Medications were adjusted, but in the morning it was clear that had only made things worse. I woke up with my jaw locked. A team of neurologists came in, and so began the process of becoming a science experiment.

When you have a rare condition, you attract attention, and it’s not good attention, at least it doesn’t feel that way. While I was pleased to have teams of doctors working on my case, it started to become dehumanizing. Tests, family history, lather rinse repeat. The following evening I had a hospital bed, and a relaxed jaw. My body was still useless.

My roommate was an amazing woman, who trained service dogs. I told her I didn’t mind if she was up early watching TV, or up late watching TV, that at home I had the TV on a lot and it didn’t bother me. We chatted, eventually peeling back the curtain. My MRI was for Saturday morning (I think). Her dogs were coming to visit, and I was beyond excited. Then things got dicey. I had to receive all of these drugs for my MRI so I was up most of the night thanks to the steroids. The Xanax/Benadryl cocktail did make me sleepy, but I still needed to be restrained for the MRI because my movements were periodically uncontrollable. Even asleep, the noise from the MRI would startle me, and cause the jerking to begin again.

Things got bad. I woke up and they injected the dye, and I felt my stomach drop. I assumed it was just from being on my back so long, and the IV injection. Once back in the tube, I realized it was an aura. I was going to have a seizure. In an MRI tube. Restrained. I focused on breathing, I just needed to stay calm and squeeze the emergency release ball. Only my hand was locked, and I couldn’t. The last thing I remember thinking was I hope the padding is enough to protect me as I let go of the ball.

The rest was told to me by my friend Amy, and others who were around. I apparently took the technician about a minute to notice the small movements were getting larger. When the took me out, I was in full seizure, strapped on my back, choking on saliva. They unlocked parts of my restraints, got me to a hospital gurney, and called a code blue. My heart rate was erratic, my oxygen saturation was okay, with oxygen and suction, but I did not, in general, look good. I guess that is kind of inferred by the code blue.

For some reason they’ll start working on you in a hallway, but they take you back to your room to process the code. They pulled my friend Amy out, and closed the curtain. They charged the defibrillator, and were arguing over whether I needed to be intubated. Amy was screaming, having heard the code blue call through the hospital when I was in MRI, and so she just knew it was me. She was shouting at nurses asking if I was okay, but they wouldn’t her in. She said all she had seen was my limp white body on the gurney, with white foam all around my mouth.

I was lucky. The massive doses of seizure drugs stopped the seriously long seizure that had nearly stopped my heart, and my breathing. When I woke up, for some reason the only thing I could think of was the dogs. I kept saying dog, and the kept thinking was confused. MK, my roommate let them know I wasn’t nuts, that she had service dogs with her, and I kept saying dog. Rocky, the sweet lab I’d been interested in, came over, and they were the first eyes I saw after coding. The concern in his face for me, a human he’d never met, struck me to the core. He rested his head on the gurney and I drifted off to sleep.

They moved me to a private room, one step below ICU. I got to visit the next day with Rocky’s brother dog, who was with a sweet man and his wife. My friend Amy, pushed to her breaking point, had verbally assaulted my friend (the guy) into coming to the hospital because she needed a break. She couldn’t stop seeing me the way she’d seen me, so dead.

Lumbar punctures. Blood draws. Eye exams. Another MRI. Two more seizures, one major, one minor. Medication adjustments. Three days of hard IV steroids, and finally I was discharged.

Officially? Probably Behcet’s, but they can’t prove how or why. I do have seizures. The doctor told me the pseudo seizure or anxiety/conversion disorder diagnoses that had been previously suggested, were absolute garbage. Everyone who witnessed me seize, and the description of the partial seizures, was enough for him to realize this was actually happening pathologically, and not emotionally. Nobody knew why I had nystagmus when I was admitted, but it was gone by the time the steroids and eye drops had begun.

The eye doctor found anterior uveitis, which explained the sudden blurred vision. This means a month of eye dilating drops when my eyes are already dilated, and steroids drops for at least a week. He said conclusively it was Behcet’s related, completing any other questions doctors had regarding the validity of my diagnosis.

I’m lucky I had friends to visit, to keep me grounded. I lost count of needle sticks. The blood thinning injections, blood sugar checks because of my high doses of steroids, insulin to adjust my levels, and of course blood draws, and IV replacements. There was talk of placing a PICC line, or other venous catheter because it was becoming increasingly difficult.

Now I’m adjusting to a new life. Waiting to see if I get to the clinic at NYU. Waiting to call Monday to set up my follow up appointments. Accepting I need the walker to get around, and that I am very weak. Desperately trying to raise funds to cover the expenses I’ve been left with since dis ability has been screwed up, and not all my medical care was covered. I also really feel like Rocky is the service dog meant to be with me. The way he looked at me with such concern, I just felt an instant bond. I know I’d be lucky with any of her dogs, but Rocky and I had this connection like we wanted to care for each other.

I made a Go Fund Me, but I worry nobody will contribute. I keep staring at my walker, at my life, and hoping things improve, but knowing that until I get to NYU I won’t know the significance of all of it. I know blood work is coming, lots of it, and that through it all  won’t have income. It’s scary, and terrifying, but it’s my life, and I have to accept it for what it is.

Bruised. Battered. Wobbly. But not Broken.

8 Days Later – the Hospital Stay

Edit Undo Redo: EMG and OMG

 

So I had a whole blog typed up, but then fell asleep, because that’s my life lately…do something productive, nearly complete it, fall the asleep. The blog was about how the state of California thinks $200 is acceptable to live off of for me in terms of disability (that doesn’t even cover my trips to the doctor since I can’t drive), and how I hadn’t had a bowel movement in almost a full week. I also started Cell Cept (Mycophenalate), which the doctor had hoped would make me poop because it tends to give people diarrhea. (Oh, yay!) This past week was miserable, for oh-so-many glorious reasons.

First off, I kicked Monday off with an EMG. Since the first round of Rituxan they’ve noticed hyperactive reflexes. Now, I’ve had this issue before, but I didn’t really think anything of it. It was minor, and not a big deal. However, after the Rituxan, it was literally like whatever nerves activate for reflexes, were kicked into overdrive. There was a ton of initial concern after that first dose because I actually couldn’t walk, but it resolved, with just some numbness lingering in some of my fingers and toes. The reflexes stated hyperactive, however.

I’ve had an EMG before, and while it wasn’t a picnic, it wasn’t as painful as I’d read about online, so I wasn’t worried this time. Apparently I was overly optimistic. Before they even got to the part with the needles, I was in agony. The second they located some of the nerves on the inside of my calves, my legs jerked violently, with the right side being more impacted than the left (at least pain wise). The doctor actually had to hold my foot at one point because my leg was kicking itself off of the exam table. Then the needle portion came, and it was unpleasant until he reached one nerve, again, on the inner portion of my calve. My pain tolerance is high, but this was absolutely horrific. I started shouting to take the needle out, and he kept saying it was out, but it felt like it was still in, and the burning went all the way down, around my calve, and into my foot. He actually had to show me the needle to convince me it wasn’t in anymore. When he reached my feet, I tensed up mentally, figuring it would be worse, but I barely felt it, and finally when he activated the nerve to get a little jump out of the foot, it was mild, like the last time I had my EMG.

The doctor told me that the test results were borderline, which is the story of my life, but then he compared them to my prior EMG, and diagnosed mild neuropathy. At this point he doesn’t know what caused it, but I’m having an MRI on Monday. I don’t see the neurologist again until the 6th. I see my rheumatologist on Friday. I was in so much pain Monday, but rallied because I had plans with “the guy,” but he had to drive me the three blocks to his place, because the nerve was still tender for almost 2 days. Even now I’m still in pain, though I’ve noticed a general worsening neuropathy in the last 24-48 hours, which has me slightly concerned.

That’s the problem, they increased my Neurontin, which should in theory make neuropathy better, but I also started Cymbalta (for the depression caused by the Keppra) and then the Cell Cept. The MRI is to check for signs of Neuro-Behcet’s, which can be pretty brutal from what I’ve read (tendency to go after the brainstem) or MS.

Multiple Sclerosis has been on the table for several years, particularly because of intermittent issues with control over my legs. It should have been helped by the drugs I’m taking, though, not made worse. Of course, my body doesn’t always do as its told. My worry is that, because the Behcet’s didn’t go into remission, if I do have MS, it was stirred up by my treatment. You activate the immune system with these infusions, because you’re putting in antibodies. It’s great in theory, but potentially problematic if it doesn’t work. It didn’t work completely which is why I’m on the Cell Cept now. (I’d be on Azathioprine, but that stuff had me wrapped around my toilet with body aches and the chills. I couldn’t drink, or eat, and basically would have needed to be admitted to take it, and that’s not realistic for something you take daily.)

So now I’m on Cell Cept, and the other drugs, which has resulted in me being very sleepy in the mornings. I take my meds, and then fight to stay awake. I’m pretty much only coherent from 7pm-1 or 2am, the rest of the time I feel drunk or stoned, or I’m just flat out sleeping. I’m nauseas, a lot, and when I’m not nauseas I’m not hungry. The Zofran helps, but when it wears off it’s difficult to function. Anything I’ve eaten, I’m digesting slowly.

Today is bad because I actually had a bowel movement…for the first time…in 6 says. I’m so nauseas, and I’ve had more than one because that’s what happens when you literally don’t have ONE in almost a full week.

Depression is a thing. I mean, the medication takes a while to work, and it’s hard to be upbeat when your body feels like it’s abandoning you. I keep telling myself that my worth isn’t determined by one single thing. My illness impacts my life, but it doesn’t have to define me. Still, when you find yourself become a Netflix/Hulu/HBO Go/Amazon Prime aficionado…it’s terrifying. I also get worried because I want to work in a laboratory, badly, how can I do that with neuropathy? From what my doctor said, it shouldn’t be permanent, if it’s caused by the Rituxan, however, it also shouldn’t come and go and be bad like it is right now, if it was the Rituxan.

I just keep wondering where my life is going. It’s easier to tell people I don’t know what I want romantically, because I don’t know what I can give. Marriage isn’t as important to me as finding someone I love, who loves me back, and treats me well. I want someone who gets along with me, who shares my nerdy love, and at least has some similar TV show and movie preferences. I want kids. This is where things start to get complicated, of course. My neurologist quietly reacted to my reminder that I was in the middle of a divorce, and didn’t have kids, with a question about whether I planned on having them. I said not anytime soon, indicated I had an IUD, and assumed the question was relating to the medications I’m taking. His quiet reaction was to suggest I consider my family history, and my own health, because some autoimmune diseases get better during pregnancies and some get worse. You never know, and on top of it, there appears to be a strong level of heredity involved in terms of autoimmune disorders in my family.

Breathe in, breathe out, tell yourself that it doesn’t mean your life is over…

It’s more about wanting a somewhat normal life. As the guy has reminded me, nobody is fully normal, and fully healthy, but I do wish I had something easier to treat. I also wish that I didn’t look like an acne riddled teenager. People keep suggesting acne treatments, and I have to explain that it isn’t acne. Maybe steroid cream would help, but I’ve been to tired and too sick to get to the store and try it.

Having a chronic illness sometimes makes you feel lost. You feel like you are your illness, at least that’s been my experience. I know I’m a human being, but at the same time missing out on life starts to make me feel inhuman. My rheumatologist is thinking about sending me to the hospital affiliated with the medical school here, and it’s almost like I’m a case study at that point. Maybe I am…but I need to remember I am a human being, too.

Just breathe…

Edit Undo Redo: EMG and OMG

Wait, My Weight?

Okay, so for years I was tall and skinny, and I didn’t know I was skinny because like most teenagers I thought I was somehow chubby. I was 5’10”, and 128 pounds, yet I thought I could tone up. Whatever.

Adulthood came, and my weight was around 140, and I was content. I was slim, I wanted to be toned, but things fit me fine, and I was good. Over the years, my weight fluctuated, but that happens, I hit 25, and by then I was around 150, which for my height wasn’t terrible. And then the medication parade began. One sleeping medication made me go up to 170, when I stopped taking it, and ate healthy and exercised for a friends wedding, I got down to 135 pounds. I was happy, in shape, and things were good. Until the steroids began.

Here is the thing about me and prednisone or medrol dose packs…I don’t get hungrier. I don’t want to eat more, in fact, I have to force myself to eat…but I still gain weight. Then when I stop the steroids, my hunger comes back with a vengeance. By May 2015, I was 190, the heaviest I’d ever been. The winter had destroyed me with multiple steroid runs, and living in the middle of the woods in upstate New York hadn’t helped me stay active. I began to eat healthy and started to lose weight, but it was slow going. Then I had a seizure. Starting Keppra was like going on a cleanse, I wasn’t hungry, but I couldn’t stop having diarrhea. Everything I managed to consume, immediately exited my body with a vengeance. Soon I’d dropped to 175 pounds. It was around this time that my husband and I officially decided to separate, and I took on the stress of deciding to move across the country. The weight was coming off, but I wasn’t really thinking about it. I was eating when I was hungry. What was the hurt? I’d put on weight, I could stand to take it off.

Doctors appointments in California were always annoying. I was weighed routinely and hated the number. I wanted to be back around 150, at least, ideally 140, but no lighter. I was happy as long as I looked toned. My goal wasn’t the number on the scale so much as how I felt. Whenever steroids were mentioned I cringed. What would happen to my body? It all felt so unpredictable. I insisted on only taking them as needed, and refused new sleeping medications with any sleep related side effects. I would sort this out somehow, but my weight needed to be related to my activity and diet, not some medication side effect, if I could help it.

Prior to my knee surgery I thought I still weighed around 175 pounds, but my primary care doctor seemed dubious, and on the scale the number 160 stared at me. I was floored. How the hell had I not realized I’d lost 15 pounds? Sure I’d been walking more, and had bought new jeans, but I didn’t own a scale. After the surgery I was convinced I’d gain weight, but instead I was down a few more pounds. A month after surgery I was at 150, and a few weeks after that I found myself down to 148.

While a lot of people may find this all acceptable because losing 42 pounds over 7 months is hardly dangerous, it’s kind of daunting when you aren’t doing much differently, or at least so I thought. I turned out my calories were in the dangerously deficient range. I wasn’t hungry, so I didn’t eat. It seemed like a simple equation, eat when you’re hungry, yet here I was literally starving myself…entirely on accident.

I went out and purchased meal supplement drinks, and I’ve stock piled the house with protein rich foods. If I can get the calories in, via high protein (I’m a vegetarian and I can’t tolerate dairy so it’s not through meat) meals, then I won’t keep losing at such a crazy rate. Ideally I’d lose some fat, while building some muscle. I see photos of myself 10-15 pounds heavier and prefer that girl, because she is toned. Now I’m sort of waif-like. The guy I’m seeing even commented after returning from two weeks away that he thinks I’ve lost weight and asked if I was eating, and I assured him I was. It’s entirely possible I’ve lost even more weight, and could be lighter than 148.

So what is the big deal? I have a history of ketoacidosis. I’m not diabetic, and the instances were potentially related to a stomach bug, at least one of them was, but my body is quick to metabolize itself. If I’m burning through my muscles (and I am) as well as my fat, I could be increasing the acidity of my blood and urine. Given my recent scare with low potassium, and the fact I was dumping protein in my urine, it’s not a huge leap to assume I am going through some catabolic processes without realizing it. I need to give my body the nutrition it needs so that it doesn’t literally eat itself in an attempt to get what it needs to go on.

I wasn’t happy at my heaviest, but I’m not happy now either. I want to build lean muscle, and I can’t do that if weight is still sliding off of me. They are doing some thyroid testing just in case, but it’s an interesting enigma given how suddenly my weight gain began five years ago. They were convicted I had hypothyroidism for a while because my food diary indicated I should be losing weight while I steadily gained. Now it makes sense that I’m losing, but when you compare my intake to prior intake and my weight gain, it’s funny how such a minor change in calories can yield such enormous differences.

Today was all about protein and fruits blended in my Nutribullet. I cannot stomach much in terms of vegetables, but do plan on heading to the grocery store tomorrow to get stuff for baked potatoes. (High in potassium and easy to digest, go potatoes go!) I don’t worry about indulging here or there, but ideally I need to find consistency. One day I only ate 500 calories. I wasn’t even hungry, I had to force myself to consume what I had consumed. The next day I managed to meet goals, but just barely, by eating a whole gluten free dairy free pizza.

Protein shake powder is on its way, which will help, and I know that I’ll have a handle on it. When you can eat whatever you want in terms of veggies and fruits, it’s different. I can’t break down fiber well, so I haven’t been able to eat a salad in over a year. (Me + Salad = bathroom nightmares.) I can get the nutrition from vitamins, and supplements, so it’s not a total loss, but I’d like to work fruits at least back into my diet via smoothies. I may try spinach in there, maybe, but the green thing sort of creeps me out.

At the end of the day food isn’t enjoyable. Nausea and pain are a chronic struggle, and while they didn’t find sores in my intestines, they did find them in my rectal area, which could or couldn’t mean I have Behcet’s in the GI tract. Given the GI bleeding I experience, it’s likely, but again, it’s all speculative. (Oh Behcet’s, I loathe your hypotheticals.) Having that blocked celiac artery doesn’t help, but they can’t stent it or fix it in any other way, so it’s just one of those things that shouldn’t cause me too much discomfort but often does.

Wait, My Weight?