Flare City – Autoimmune Blister and Staph Infection

It’s no secret that I’ve been stuck in a pretty constant flare that only seems to be getting worse. The only option I have is to wait for my insurance to approve IVIG. We’ve done one steroid dose pack and I’m preparing for a second. To make things even more fun, my rheumatologist is out on maternity leave, and my insurance company was taken over by another company (it’s a contract deal). The transition hasn’t been smooth, to the point where I can’t even call and get a hold of someone at my insurance company…and I’ve even trying for six weeks.

Yes folks, you read that properly, I haven’t been able to speak to a human being at my insurance company for over six weeks.

While this may annoy the average 31-year-old insured individual, it’s definitely not the best when you’re in the middle of complex insurance approval processes. My chair is coming on Monday (if I can work out a payment plan), but IVIG still remains in limbo. My rheumatologist’s replacement suggested I switch to another practice, something that was discussed a year ago but discarded as I prefer my rheumatologist, and the university hospital nearby has a horrid chief of rheumatology (or at least did a year ago). Point is, I like my rheumatologist, she just happened to have a baby the same time period where my insurance company went to shit.

I was dealing with the increased gastroparesis symptoms, the GI bleeding, the fatigue, all of it…and then something new for me happened. I woke up last weekend, with a blister on my hand. It was just a little thing, but over the course of the day it got worse and worse. There was speculation on my part, and my friends’ parts, over what caused this blister. The best we could come up with is that my hot water bottle somehow burned me, but I didn’t wake up, and the bottle doesn’t have a leak. Moreover, I haven’t ever had an issue with it. So this blister just keeps getting worse, and eventually it takes over my entire knuckle and is working down into my hand.

I’m being eaten by a blister of unknown origin.

My friend Mike is a chef, and he informs me that I need to ignore everyone else’s advice and just pop it, throw some antibacterial ointment on it, and go about my life. I call him stupid until the thing begins to get so big I don’t have much of a choice. I was not having that thing pop in my sleep, and realistically I’m too clumsy not to bump it on something and randomly (and disgustingly) pop it unexpectedly.


I pop it, and it’s not really anything special. I throw some bacitracin on it, and call it a day. The next day it’s tender, but not abnormal, and I keep it open so it can heal, but I’m careful to keep it clean, or so I thought. The next few days are a blur because I wasn’t feeling well in general, and I had an allergist appointment. What I do remember is looking at the spot where the blister had been, and being in denial that it was infected…until the day I went to the allergist, when I realized it was scabbing over pus filled portions, and literally creating an abscess.

Double gross.

I went from my allergist to my primary care doctor, who promptly told me I was correct, and it was definitely infected. He also informed me that autoimmune blistering is an actual thing. My body literally attacked the layers of my skin, creating a blister because it just destroyed a section on my hand. He gave me a prescription for antibiotics, but by the next day it was worse. Way worse. The night I’d gotten antibiotics it had worsened to the point where I had a thin layer of skin covering what was undoubtedly my tendon.

You shouldn’t be able to watch your tendons move, and while it was disturbing, I will admit it was kind of cool. Still, I don’t recommend it.

My doctor calls after I take another dose of the antibiotics that were already making me feel like total hell. Apparently I have a multi-drug resistant staph-infection, and while it isn’t MRSA, it doesn’t matter, because I’m allergic to all drugs ending in -cillin. Yay. We’ve established it’s getting rapidly worse, because I’m taking a boatload of immune suppressing drugs, even though they’re not doing a great job at treating my Behcet’s anyhow. Fantastic universe. So I’m sent to the ER.

The ER wasn’t too busy because of the time of day I went in. They ended up wanting an MRI because there was a chance my joint and tendon were infected, but thankfully they weren’t. That would have meant being admitted and going on IV drugs for a few days. I was given an IV push of an antibiotic (but honestly can’t remember the name), and send home on Keflex. I hate Keflex because of the nausea it  causes, but I don’t have much of a choice because of my allergies. Another issue I have with Keflex is kind of weird. It makes me really drowsy, and actually gives me a fever. Not a high fever, but around 100-101, which also makes me feel crappy.

If that weren’t enough, I’ve been dealing with stress over finances, namely insurance funds, and coming up with the money for moving and medical equipment. Life should be easier when I have less rent to pay, but saving up the money to pay insurance installments three months at a time, is going to be really hard. This rough patch also doesn’t help.

Can we address the reality that my body is flaring, and there is a decent chance that the stress made it worse…and my body blistered itself. 

I’m still sort of in awe that a body is capable of doing something like that. I think most of us who deal with autoimmune issues, have moments where we’re shocked at the destructive power of our own bodies. I’ve witnessed countless things, including losing the ability to move because of hyperactive reflexes, but somehow this one blister was more intense for me. I think there was something about being able to actually see with my eyes what my body was capable of. It was as though I was in some long cold war, and then someone dropped the first bomb. I was aware I was in a flare, I knew what was going on inside of my body, but seeing it externally was a whole new game. I’ve got an oral ulcer, and a few other external signs I’m flaring, but there was something about a blister that just felt different.

My roommate has reminded me to relax, that he’s handling the movers and the moving fees, but I’ve never had to rely so much on others, and it’s definitely taking it’s toll. For now I guess it’s all I can do. IVIG can’t come fast enough.

Flare City – Autoimmune Blister and Staph Infection

First Round of IV Vitamins, and the Unemployment/Disability Situation

Yesterday, on the 23rd, I got my first infusion of fluids vitamins, and amino acids. It wasn’t pleasant, but mostly because I was still so sick going into the appointment. Basically I’m still having bleeding issues, most likely from my colon, and lower intestines. I’m also having a lot of nausea courtesy of the gastroparesis. I find myself in this horrible situation where, if my stomach and upper intestines empty, they hit the lower intestines where the ulcerations are. So the nausea fades momentarily, only to return as the pain of the food and drink moving through me hits the ulcers. The doctors are fairly sure some of the ulcers were deep, and created blood clot like scabs that are coming off when I feel like I have to go to the bathroom. It’s super fun…

Anyhow, I pulled myself up off the bathroom floor (literally) and went in for the infusion. I was pleasantly surprised when the nurse hit a vein on the first try. (I had forced myself to drink and keep down liquids, though it had left me violently nauseated.) She warned me that the infusion would taste funny, like a Flintstone vitamin. Turns out it tasted exactly like one, but not the fun fruity part…the gross after taste part. This would have been manageable had I brought mints or something, but I hadn’t. It also would have been manageable if I weren’t already trying to avoid throwing up. Then there was the woman who seemed determined to talk to me.

I am pale, obviously in pain, and she just kept talking…

I’m not sure what we talked about. I grunted responses periodically, but spent most of the time checking out her adorable dog. Then something fun happened. About halfway through the bag I thought I was dying. I felt hot flashes, the nausea peaked, and I was pretty convinced I was going to faint or have a seizure. Then, a little while later, it all went away. I told myself it was just the Zofran I had taken prior to the infusion…but I kept feeling less horrendous. Now, don’t get me wrong, the damn thing still tasted awful, but I didn’t feel as awful. 3/4 of the way through the infusion, I was actually sitting up in the chair instead of half curled over. As it finished I had to admit, I felt a lot better, just from the fluids. The vitamins were much needed, but I am sure they haven’t done much just yet. The nurses and nutritionist had all said it would take several regular infusions before I felt a lasting benefit from the vitamins and amino acids. As I’m getting up to leave, talkative lady addresses me and the nurse.

“You look less dead.” Then to the nurse, “Doesn’t she look a lot less dead?”

I mean I’d rather look totally alive, but I’ll take less dead I suppose. My stomach still hasn’t been doing well, but that’s just the nature of the situation. My upper GI doesn’t want to move at all, while the lower GI is a mess of ulcerations and blood. Happy holidays I suppose.

Hopefully I can get an update on my wheelchair after the holiday. I’m bummed that I’ll have to start paying copayments and whatnot, given my insurance year will begin again, but I’m hoping I won’t have to pay it all at once with the wheelchair. That would definitely require me to sell everything I own. I’m also excited to start IVIG. I’m crossing my fingers for some good news regarding my disability as well.

For a long time I was opposed to the idea of disability. I want to work. Not working leaves me unfulfilled. It isn’t even about finances, though I’m definitely struggling financially. Working has always given me a sense of pride and purpose. Even the smallest job made me feel like I was contributing in some way. Without working I feel sort of useless. I know I couldn’t work the way things are right now. As much as I may want to work, I just don’t know day to day how I’ll feel. Plus there are the medical treatments. We’re talking about IV infusions 2x per week, if insurance will cover it, then IVIG which will be given over a period of two days. From what I’ve read IVIG is done every 4-6 weeks. If it lines up with IV nutrition appointments, I could be spending 4 out of 5 days in medical offices one week per month. I’d still be spending two days per week in medical offices anyhow. Once we’re able, we’ll wean me to an IV per week, but ultimately we can’t go lower than that since I really need the fluids.

This is the thing people don’t seem to grasp about disability, and those of us who are chronically ill. We fight hard to get to a baseline that is somewhat close to that of a healthy person. Most of us won’t ever feel as healthy as a healthy person, but we can fight hard to become functional enough to basically pass as healthy. Getting to that point takes a lot of effort and time though. In my instance we’re talking several IV treatments, a ton of oral medications, and carefully orchestrated drinks and snacks. Even with all of that, I could wake up and feel miserable. If you look at my IV schedule alone, it become a scheduling nightmare. Toss in the fact my body doesn’t operate well in the mornings, and that I could randomly have a few bad days without warning, and you get someone who really doesn’t have the ability to work right now.

I am not defined by my illness, however, I am limited by it. For a long time I lied to myself, and swore that Behcet’s and the things it has caused like gastroparesis and autonomic neuropathy, would never limit me. I was determined to live the life I wanted, despite the symptoms. As I pushed myself, I got sicker and sicker. Then denial kicked in. I told myself that I was in a flare, and that once the flare was over, I could get back to living a normal life. Denial isn’t helpful. I hit a point where I had to acknowledge that some of the things I wanted to do, I couldn’t do, because of my chronic illnesses, and that’s okay.

Yes, you read that right folks, it’s okay to accept that your disease limits you…as long as you don’t let it define the entirety of your being.

I am chronically ill. I may have to use my wheelchair at times. I cannot work. My diet is an absolute wreck, and even when I do follow the doctor’s advice, I can’t always succeed. The ER team knows me. Professors have to allow me extra time should I require it. These are all facts of life for me. I accept it, and I pivot because of it.

Find something else that you love, and know that limitations are not forever, but even the ones that do stick around don’t change who you are as a person. 

Life is what it is, and sometimes we can’t wrap our heads around having to change our plans, but we also can find ourselves trying something new that we hadn’t even thought of before. We find new passions, new paths, and we go with it.

So go with it. 

First Round of IV Vitamins, and the Unemployment/Disability Situation

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!

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 (Cyclophosphamide)

So much drama, and so much going around and around, but I guess that’s the joy of being chronically in. I swear, we should all write passages for a book called, “Chronicles of the Chronically”. This week my pain levels have hit a new level of horrible, and since I can’t really take narcotics without having to worry about potentially having a seizure, I’ve basically just had to suck it up and deal. This has meant a whole lot of showers, heating pads, and surprises. Surprises? Well, for example, one day one set of joints will hurt, the next day, a whole different set will flare up. Yesterday my feet opted to get in on the fun, which I wasn’t really aware of until I got out of bed. Every step, you could hear cracking, and it felt like bones were breaking.

My ex, being the wonderful piece of garbage that he is, has decided that, rather than just go through with the divorce as we agreed, he wants to get a lawyer, disagree with everything, and force the proceedings into court. He doesn’t realize that this will drag things out even further, and worse, cost him a whole lot of money. I’m hoping I won’ get slammed with court fees because I’m disabled and he should have to pay my fees, but we’ll see how it works out. For someone who wanted this over and done with, he sure picked a stupid thing to do. Of course he’s one of the stupidest people I know, so that’s not exactly a huge surprise. He probably figures, since I can’t make it to court, he’ll get a default agreement, or get what he wants. The idiot forgets that I am severely ill, and have a fantastic lawyer. one doctors letter, and boom, I’m officially excused from court proceedings for at least six months, and it also makes him look like an ass because it clearly states I haven’t been able to work, and will continue to be unable to work.

It doesn’t mean the news that he was pushing it to court didn’t stress me out. I found out he’d done this shortly before I found out we were officially moving onto chemo. As far as he knew I was already doing chemotherapy like treatments, which I was, so in his mind I probably wasn’t as sick as I truly am. My misfortune has become his misfortune though, since his girlfriend is due in February. If he truly wants the baby to be able to get Tricare, he can’t have a wife as a dependent, who isn’t the mother of the child. I’ll be doing chemotherapy until mid-April, so unless they want to pay out of pocket for the appointments and birth, he’s going to need to stop being unrealistic.

I think the hardest thing for me has been knowing that he’s supposedly expecting a child with this young woman, and  may be losing the ability to have a one myself. The odds on my regimen range from 60-70% in terms of ending up infertile. Knowing that leaves me 30-40% is comforting, but not really as comforting as having eggs frozen just in case. I found out this week that freezing my eggs isn’t an option. My doctor doesn’t want to delay the start date, and we’re talking about starting next week if the infusion center has an opening. We did talk about Lupron, but there isn’t a ton of clinical evidence it works, and she’s concerned the side effects of menopause could mask whether the Behcet’s symptoms have started to abate. There is also some concern about hormones again, and how that impacts my disease. Would putting me into menopause, then pulling me out of it, end up making me flare immediately after we reverse it? I did have a lot of flares concurrent with my menstrual cycles.

The guy, for his part, has been supportive, joking about whether there is anything sexual that can be done with bald heads, and chatting with me about wigs. He’s also repeatedly told me how he’s here for me, despite my concern that I may vomit and he may hear me. Other friends have come out of the woodwork, too, and it’s nice to know that I’ve got people. Most can’t physically be here, but I know they would if they could. I did cry because I have lost a lot of friends being sick. I was talking about it with the guy, and I told him I felt lonely, a lot, like my illness drives people away, and then on top of it, it prevents me from making new friends. Being introverted just magnifies the effects.

My shitty insurance, while it covers things financially, often only offers me shitty providers, and in terms of mental health providers that’s majorly clear. I liked my counselor, but the doctors regulating my psychiatric meds have no clue what they’re doing. It’s scary when you’re looking into black market ways to keep yourself plugged into society because your doctors have gone crazy themselves. (I’m talking getting backup meds from a friend, not street meds, though there are a lot of drug deals going down as of late.)

Who would I talk to about this stuff besides other sick people though? The guy asked if I thought about looking for support groups, and while it’s a good idea, I also had to chuckle because any support group for the chronically ill, is bound to have a lot of absenteeism. I know I’ve folded under pressure lately, feeling like crap, and wanting to just sleep a little longer. I force myself to wear actual pants to the guy’s place, but the truth is, I’m in pajamas so often ,buying a few more pairs seems like a good investment. (Note: long legs = buying mens pajama bottoms to be cost effective. Victoria’s Secret works, but is the cost worth it, really?)

So chemo. Legitimate chemo. My mother oh-so-kindly pointed out that it’s not real chemo, like cancer chemo…even though it’s the same drug. True, my schedule is less rigorous and involves less drugs, but the side effects, and dosages, still make it a shitty thing to look forward to. As the guy has said, though, I can think about it and prepare for it, but I also need to think about and plan for the end of it. Remission. Vacations. FUN. I had to postpone my trip to Mexico, sad, but I didn’t she the funds anyhow. I’m determined to get to a nice hot tub, somewhere it snows, at some point during the treatment, maybe around New Year’s. I can take a real vacation once it’s all over. I’m also kind of hoping my hair just falls out at this point. Post Cell Cept and steroids, it’s just falling out and breaking constantly. I don’t know how I have any left except that I had super thick hair before hand. My scalp has hurt lately, and more hair has been coming out, so I’m thinking with chemo, it’s bound to just abandon ship.

Cytoxan (Cyclophosphamide)

Breaking Down

The last few days have been miserable, and the misery continues. I’ve manage to stay positive through most of this recent flare, but things have hit a point where I lost the ability to smile my way through the pain. Currently I can feel every joint in my body, or at least that’s how it feels. I’ve take to googling, “is there a joint in your <fill in the blank>” because I’ll have such intense pain at a random location, that I’m not sure what else it could be. Fun fact, you can get joint pain in your collar bone.

This weekend was a big outdoor music/art festival that I was really hoping to attend. I knew that, unless I was in remission following the Rituxan, I wouldn’t be able to do all three days, nor would I really want to be outside for all three days, but today was the big day. I was really excited about the idea of seeing the Chainsmokers, and then there were a bunch of other bands that also piqued my interest. So, as the flare dragged on, and the symptoms worsened, I’d let go of the dream. It didn’t mean I wasn’t upset by the reality of missing out, it just meant I was prepared.

Until friends started posting photos online yesterday of day one, and I started to really think about how things were going. I’m back to the walker, and even with the walker, I can’t go very far before my body simply gives up. My face is covered in lesions, and people keep saying it’s acne from the steroids but it isn’t, it’s the Behcet’s. My leg has ulcerations, too, and they’re large and painful. The fatigue is horrific, but because of the pain, I’m not sleeping well, so it’s this constant battle between exhaustion and an inability to give into the need for sleep.

I want to be positive. I want to tell myself that the trip to the NYU clinic is just around the corner, and that as soon as I go there will be at treatment plan, and a road to recovery, but on days like today, I can’t even process the hopeful portions of the situation. My friend was shocked today when I told her via FB messenger that I was ready fore chemotherapy. One of the big reasons I pushed so hard for NYU was so that I could avoid chemotherapy and try a novel treatment plan that would spare me the six months, and side effects. Today the pain is so bad, six months of chemotherapy hardly seems like a sacrifice.

When you’re chronically ill, you find yourself missing out on a lot. Strangely, you don’t really think too much about it, at least after a while. Your reality is your reality, and what you can and can’t do isn’t something you choose. I’d love to do what my friends do, but I also know I can’t, so I just go about doing what I can do, and enjoying the moments I get. Still, you have those moments, when you’re confronted with the loss of normalcy in really unexpected ways. I have just over two weeks until I’m expected to makeup a class, or receive an F grade, and I don’t know how I’m going to pull it off. I can’t really move, let alone complete laboratory assignments with any kind of precision right now. Add in not being able to work, so I can’t afford the $100 a week to get to and from classes, and that this is four months straight of on campus coursework…yeah…you see where I’m going with this.

Getting the service dog would be a huge help, but at the end of the day, I’m still very sick right now. The amount of pain I’m in, along with the limited mobility, and visual impairments, is suddenly unavoidable. Previously I had joint pain and fatigue, and the occasional ulceration, but most of my symptoms related to my stomach. I still have stomach issues, and definitely have ulcers brewing internally right now, but those things are sort of simple to hide from people. Yes, I lost weight, and people noticed, but they accepted my excuses, and we went about our lives.

Now? Sometimes it feels like everyone has their lives moving forward, and I’ve stalled. I don’t expect anyone to wait around with me while I sort through the train wreck of mechanical failure that is my own body, but I also worry that, by the time I’m back on the road, I’ll be miles behind everyone else, and worse, miles behind where I want to be. Will I ever find someone who loves me, and wants to be with me, despite the reality that this type of situation could crop up again? Even with chemotherapy there is a chance I have a bad flare, and need more chemotherapy, or some other serious treatment.

It’s hard explaining to people who view “remission” as permanent. It can be, and if it is, you’re lucky, but with my constellation of symptoms, I will always be on maintenance medications. Always. I don’t say it to be negative, I say it because it’s the truth. Even in the absence of symptoms, when they can reduce the drugs I’m taking, they will have me on something to prevent symptom recurrence, especially given the severity of symptoms I’ve had. It isn’t like cancer, where remission really can mean it’s gone forever, and you just keep an eye on things to make sure it doesn’t come back. With an autoimmune disease, your immune system is permanently fucked. Even if it decides to play nice for a while, it’s not friends with you, and it only takes a stressful event, or illness, to trigger it’s overreactive anger.

I want to be working in a full-time position, doing what I love. I want to finish my degree. I want to apply to an internship program and get my advanced licensure. I want to be at concerts, and vacations, and weekend getaways, with friends, and new friends. I want to be out downtown, dancing, in heels and a dress. I want to go out to eat, and actually eat what I want, without fear. I want to sleep through the night. I want to keep my apartment at a reasonable temperature.

Instead I’m looking into filing for full disability. The internship program is impossible, requiring a full 40-hour per week commitment, which I can’t do health wise or financially at this moment. Concerts, vacations and weekend getaways are also unobtainable due to my health and finances. I can go out, on occasion, but I can’t dress up right now. I can only wear flats, and in a dress the ulcerations on my legs make me uncomfortable. Let’s not even talk about the horror show that is my face. Eating at a restaurant is a statistical nightmare. Assuming I can get plain white rice, all I can do is take one or two bites, because the GI ulcerations are going to throw a fit the second they’re touched by anything traversing my GI tract. I haven’t slept straight through a night in longer than I can remember. I’m woken up constantly by cold sweats and pain. The heating pads, and to flashes, mean our apartment is unreasonably cold.

I live in this box, where I smile and give a thumbs up, but desperately want to climb out of the box and just live life. I want my smile and thumbs up to be me doing the things that I want to do, instead of relishing in the joy of the things I can do. It doesn’t mean I’m not grateful for what I can do, it’s just that finding the joy in the things you’re able to do isn’t always gratifying.

Then there is the pain. The severe and horrible pain. Pain that I haven’t dealt with before, that I swear is threatening to swallow me whole. Shooting from my neck, down each vertebrae of my back, like hot little exploding fire balls. Pain in joints I didn’t know existed, and joints popping so loud I swear the neighbors can hear them. Pain that makes me need to be held, when I’m not that girl. I’m not the girl who asks a guy to come over because she’s falling to pieces over her physical state, or mental one. I’m the girl who pulls her shit together and deals with her own crap.

I texted the guy because I’m in that much pain. He’s actually going to the festival today. The day I was dying to go. I burst into tears, not because I was mad at him, I’m actually really happy he was able to make it. I cried because I wanted to be there. It would have been nice to go with him, but I just wanted to go in general. It was like this pile of emotions, neediness which I hate, and jealousy, which I may hate just a little more. Again, I’m happy for him, but it’s hard not to despise my current situation.

You might be a spoonie if you’ve run out of things to watch on Netflix, Hulu, Amazon Prime, and a plethora of other streaming sites…so you order the industrial antenna because why the hell not try and pirate as many channels as possible so you can watch live TV? Especially if that means football?

I want my life back. I want a life back. The quality I have right now is poor, and I’m not asking to run marathons, or jump into some insane routine that involves 60+ hour work weeks. I simply want to live like my peers. I want to enjoy things again

Breaking Down

When Your Nerves Make You Nervous

I have two rheumatology appointments this week, which I’m thrilled about. My old rheumatologist is seeing me tomorrow, and I need to ask her about some lovely lesions in a not so lovely place. Then the following day I see my new rheumatologist who will hopefully be just a *little* nicer to me this time around. He’s the same asshole who wrote “probably” Behcet’s instead of the reality that I have Behcet’s, on my paperwork. (Lovely man.)

Anyhow, I can walk without my walker, but not for long distances. I need to get a can or some other assistive device, but it just feels so aggravating. I find myself pushing myself, then dealing with the numbness and tingling from pushing myself. Of course that leads to the weakness, which leads to me not moving, which leads to a vicious cycle of lather, rinse, and repeat. I know I have ulcers in my intestines, because I’ve given into drinking the lovely sucralfate suspension. It tastes horrific, but the wonderful numbing power isn’t really something to be belittled. It’s kind of scary not realizing how much abdominal pain I have, until I don’t have it, and then realizing that normal people feel like that all of the time.

My appetite is back now that my steroid dose is lower, but then again, so are the ulcers, eye issues, and oh so lovely neurological problems. The Behcet’s headache is real, and it’s nasty. I wake up in the morning with the shakes, and the night sweats are vicious. You spend days wondering if it’s the medication, or the disease, before you realize it’s all basically irrelevant. On top of it I’m poor, so I had to eat what was in the house today. That ended up being a cucumber and vinegar salad, a favorite, but not when you’re mouth is raw. Oops.

The neurological issues have me irritated because I feel like they’re Behcet’s related, but I can’t get the doctors to agree because my MRI’s are, “mostly” normal. Nobody has elaborated on what that means, but from what I’ve gathered there isn’t evidence of Behcet’s in there. I’m not totally shocked given that 90% of my symptoms are peripheral. The seizures are obviously a concern, but with the gallery divided over the cause of that, I guess I’m in a holding pattern. The increased dose, along with rest, seems to be keeping things under control, but I’m also still taking a decent dose of steroids and having skin symptoms. As my steroid dose drops, the skin symptoms increase.

Rheumatologist #2, that I despise, tried to chalk my skin up to steroids, but then the steroids cleared my skin, and he was forced to eat his words. Now he’s back to the same old line, despite me showing old photos of the same rash, which again, cleared at that point with a few steroid injections and steroid topical creams. He won’t talk about neurological involvement, and neurology won’t talk about rheumatology treatments, even though rheumatology’s treatment, 3 days of 1 gram IV steroids, cleared up 90% of all my symptoms…neurological symptoms included.

I guess I’m just terrified of showing up to my appointment in NYC, and having the doctor agree with my current doctors, and not have options in terms of treatment. The reality of having neurological involvement, but no MRI abnormalities, is somewhat terrifying. My right side, particularly the leg, has betrayed me. I also have nystagmus, which honestly, makes no sense, given that I’ve never had it before. I actually did an in depth test years ago that ruled it out as a cause of my vertigo when they were testing for inner ear diseases. The fact that it would show up now, in the midst of all the other Behcet’s symptoms, makes me feel like it’s a sign something isn’t going properly in my brain.

When you’re chronically ill, you get intuitions. It’s even more tuned in when you have multiple chronic conditions. I know I have PTSD, and I can tell you when my heart is racing because I’m anxious, or if something weird is going on with my body. I can tell you when my fatigue is because I’m depressed, or if I am legitimately fatigued from my Behcet’s. I’ve learned to sort out what symptoms go where, because they genuinely feel different. Doctors tend to think patients with mental disorders can’t sort to the mental disorder related symptoms, from the disorders stemming from other conditions. Maybe it’s true, sometimes, but not in situations like this, and not in someone like me.

I need NYU to work out because I desperately need a doctor in my corner who can say to other doctors, “Shut up, listen to the patient, and listen to me.” He’s the expert, and it’s like, if he has my back, the other doctors will have to fall in line. It’s a one time visit, to develop a treatment protocol, and there is a lot riding on it. I’m totally ready to go to the movement disorder clinic here at UCSD, once they find an opening, but I think it’s a bit ridiculous to exclude Behcet’s when every other possibility has been worked up. Why are we searching for something else when I meet criteria, minus the MRI? Why are doctors in the ER calling my seizures psychological, when my inpatient neurology team needed to call a code because my heart started throwing extra beats, and I wasn’t breathing adequately?

In a world where ER doctors are overworked, and chronic illness patients are forced through ER doctors to be admitted, it becomes a cluster of chaos. I’m hopeful that having hospital affiliated doctors will allow me to be direct admitted in the future, should I flare and my doctors decide I’m better off in an inpatient setting, but in the meantime I’m stuck in a place where I don’t know where to go or who to see regarding various symptoms. I have all these specialists to see, and all this paperwork to file, and I pretend like I have it all under control, but really I just want to curl into a ball and pretend like I have the flu. Pretend like this is just something that impacts me for a few weeks, and then I’ll be fine.

School is another stressor, which sucks because I love school. I won’t know until November if the service dog I’ve applied for will be up for placement, and it could be even longer before he’s placed. There are interviews, etc., to take into account, though the trainer seems to be really happy with the idea of me as his companion. The issue is he may have a kidney condition, but he also may not, so it’s, again, totally dependent on the test results, and what they decide when it comes to placement. I have to take a class in October, or I get an F, because I took an incomplete back in April before I started the infusion process. November, December and January are also on campus laboratory courses which, in theory, are doable, if I can find a reliable ride program, and if I have assistance with a dog. This isn’t so true if I’m doing chemotherapy, depending on how I’m feeling during the chemotherapy. There’s a part of me that wants to power through, regardless, and another part of me that recognizes I’d be having chemotherapy during cold and flu season, then going to a college campus.

It’s such an odd place because I haven’t been offered any other treatment options. Long term steroid use isn’t really effective, or safe, and the doses required to control my symptoms are simply too high. The only real way to dent this, at this point, seems to be to wipe out my immune system, and the only way to do that is with some aggressive chemotherapy.

I find myself justifying symptoms I shouldn’t justify. The insane amount of antacids? Well I am eating more. Slipping and falling? I was sitting too long. Bloody bowel movements? It happens sometimes! Then I see my face, covered in ulcerations, and my legs, and my hands, and now my arms, and I realize, that I’m flaring. that my head hurts. That my eyes are straining. That my exhaustion is beyond any normal level of exhaustion. The numbness and tingling, and lack of coordination, it’s not okay, and it’s not something I can  just chalk up to lingering effects of neuropathy, even if it is improving, because it has happened before, and it will happen again.

The MRI was normal, but what happens when it isn’t? What happens when this painful cycle of recurrent flares leaves me someplace random, with legs that don’t work? In the meantime how do we explain the hyperactive reflexes and the nystagmus? Why are we ignoring so many symptoms simply because the main box, the MRI, was checked off as normal?

Something is wrong. Something in my body is not okay. I need someone to hear me, to help me, to believe me, more than I need anything else.

Sidenote: my inhaler and I have been BFF’s lately, which is absurd given the amount of steroids I’m on. Inflammation for every body part I guess?

When Your Nerves Make You Nervous