Wigging Out?

I got a wig. At first I felt ridiculous with it on, and to be honest, I still feel a little ridiculous. I know people who know me will realize it’s a wig, and there is fear of judgement regarding that. I’ve worn it in public a few times, and actually had several people ask where I get it cut and colored…my hair. So yeah, it passes for real, I just have to get used to it myself.

The idea behind chemotherapy, haircuts, and wigs, is that if you cut your hair shorter beforehand, and get a wig beforehand, then you can get used to both prior to the hair falling out. Also, shorter hairs falling out are less traumatizing than long ones. Since my  hair started falling out after my Prednisone taper, I’m not really sure how well that works. Every strand was the end of the world until I caved in and had 8 or so inches slowed off. Even then it was hardly any hair because it was so thin and brittle. I just had more cut off when I went to get help with the wig, because it’s been falling out, and my hairdresser suggested a bob.

Truth? I hate it. The bob, not the wig. The wig I love, aside from feeling like everyone knows it’s a wig. The wig makes me less afraid for my hair to fall out. If anything I feel like my hair falling out more will justify the wig. I’ve had some judgment for purchasing it pre-hair loss, but the people judging don’t understand I’ve already lost a significant amount of hair. The people who know me well, have seen the hair transformation, and have been shocked at how much is coming out. Long hair is my thing, it’s what makes me fee comfortable, and not having it makes me feel exposed and vulnerable. That mixed with the Behcet’s rash on my face makes me feel ugly.

Other recent Behcet’s issues: constipation. What the hell? I’ve eaten foods I know will instigate a bowel movement, and still nothing. I need to go tonight since I have some plans tomorrow, but we’ll see how it all plays out. It’s a bit annoying, but what can I do about it? Don’t say laxatives. That will just ensure that at an unknown moment, my ass will explode like an atomic weapon, and I will have no control over when, where, or the ability to get to a restroom.

Pain and fatigue are the other two big ones, but I can’t do anything about either. The pain could be controlled with pain killers, but the problem with that is that the pain killers lower my seizure threshold. So if I’m dehydrated (and I am often) and haven’t slept well, the combination could be catastrophic. My last seizure was so long and severe it scared everyone involved. I was scared once I was alert enough to understand just how bad things had been.

I want to believe that Cytoxan is going to be the medication that pushes me into remission, but I’m just hoping at this point. I thought that things were done with Rituxan, but they weren’t. Then I was so convinced the combo of Remicade and Cell Cept would work, I planned a vacation, only to have to ask for a refund when that ended with a severe reaction to the Remicade. It’s like the disease destroying my body, is somehow in cahoots with my body. My body is fighting off the medications that are trying to fight off the disease, and all the while I’m humming, “Why Can’t We Be Friends,” in the corner while I try not to pass out, vomit, or both.

Holiday seas0n doesn’t help. Not that I’d planned on going home for the holidays, I had classes, but now I’m stuck doing chemotherapy treatments, while the people around me go home for the holidays. I know I have friends that would invite me to Thanksgiving, even if I didn’t eat, or Christmas, but because I’m doing chemotherapy, they won’t (or I won’t be able to stomach it). In any event, I end up doubly screwed because then those people aren’t around when I have treatments meaning I’m fending for myself.

I’m happy the guy is coming to my first treatment so I’m not alone, even though I felt bad for asking. He’s going to be out of town for the first week of December, and then I’ll have an infusion around Christmas, and he’ll be going home for Christmas, so I’m not going to see a lot of him next month I’m sure. (He’ll be busy with friends in between, and I’m a big fan of not burning people out.)

He’s been the only one who has really stepped up consistently through this whole ordeal. Other people have helped, but it hasn’t been consistent, whether by choice, or through no fault of their own. The majority, however, have chosen not to get involved. It’s been painful to see how many people only want to be a “friend” when that means going out and doing things together. I guarantee you when certain holidays hit, like New Year’s Eve, there will be people who want to come stay at my place. It wasn’t a huge deal on Halloween, but I wasn’t feeling well, and a lot of people have their own things going on.

Maybe it won’t be, though. The other issue is that a lot of my friend are married, or in serious relationships. They’ve made their significant others such priorities that they’ve alienated their friends. I get that your significant other should be a higher priority than your friends, but only slightly, and that’s contingent on circumstances. I have friends who spend every weekend 100% with their husband/fiance/boyfriend and it’s aggravating. I don’t care how in love you are, I guarantee you that you’d be happier if you unstuck yourselves for a fraction of a second and led your own lives. Moreover, I don’t know any men who want to give up all of their man friend time, to be with their female significant other. Being sick I can’t even fathom the thought of monopolizing someone like that. I used to send my ex out while I was sick, and he’d feign like he didn’t want to, but with all of his cheating it probably didn’t matter what I suggested. Now though, I mean it when I tell people around me to take a day or two off from worrying and let me worry.

I lie. I tell people I have it all sorted out support network wise, and while I do have a support network here, it’s not nearly as strong as I let people believe. It’s just easier to pretend that it’s better than it is, so that the people who do care, and who are involved in it, don’t burn themselves out worrying. I need to be able to take care of myself, and that might mean calling an ambulance and having to be hospitalized if I’m alone during a holiday with nobody to keep an eye on me. There is no shame in including the ER and hospital in your support network.

So yeah, I have a wig, and I’m sort of wigging out. The year has flown by, and while I still don’t know what is going on with my life, I know that I have to throw myself into this fight harder than I have thrown myself into any others. This is it in terms of treatment options, and I will make it work.

I’ll also rock the long blond hair, because it does seem to reel in some positive attention 🙂

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Wigging Out?

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

Scared, Sick, Tired

Being home from the hospital initially felt amazing. I was buzzed off IV Prednisone, and glad to sleep in my own bed. Or at least try. I woke up Saturday feeling generally like crap. A friend came over later that day to hang out with me, and I went to do foot reflexology. It helped a bit, but soon I was bak to misery. Solid foods and I weren’t getting along.

On Sunday I managed, after another night of fitful sleep, to eat half of a small baked potato. I slept better, thanks to some crafty snuggling by the guy that apple heat to a sore hip, and the pressure I needed to stop the pain, but it was only for 3-4 hours. After that I was up every hour. It seems like I’ve been made of urine since starting this Prednisone, despite not drinking nearly enough to compensate for the loss.

On Monday I woke up with a skull crushing headache, convinced I was dying. I tried to call the Behcet’s Clinic in New York, but it was a round around game due to the fact they’re not accepting new patients. Apparently if my rheumatologist confines them to take me they will, and my rheumatologist is convinced they will, but for me it’s a difficult blow. I also found out that I have to handle the cost of the flight, boarding, everything. I’m hoping family in the area can lend their apartments, however sparse the space, but I’m admitted for testing and my insurance doesn’t cover it, that means raising more money.

I’ve started a Go Fund me, but I try and keep things private on here. I also know a lot of us are on here with similar struggles. In any event, if you’d like to message me and request the link I’d happily share it, I just don’t want this blog to have an actual face on it because it’s more about dealing with chronic illness, while trying to keep my privacy since it is public.

Monday was an up and down day. I spaced out the Prednisone so I could eat some bland gluten free pizza, but I only ate half of what I’d usually consume. Then I was up with abdominal pain, and now it’s Tuesday and I’m up with more abdominal pain. Chills, shakes, nausea, headache, check all the boxes, I’m in steroid induced hell. I did more foot reflexology yesterday, but it wasn’t as helpful. I was relaxed enough to eat, but the numbness, tingling, and weakness, have returned with a vengeance.

Today I see the eye doctor, and I’m not dreading it, I’m just annoyed the appointment is so early in the morning, and that I’m awake even earlier than I need to be. The second issue is that I need rheumatology, and I see them tomorrow, but I don’t know if I can go another day without IV fluids or treatment of some kind.

I feel the disease testing me know, all the issues I’ve had before, coming at once, an then this neurological plague. The fog is probably from the prednisone, but I keep wondering if it’s going to get worse, or better. I walk with a walker and wonder who would ever want to take me out? Will I ever go out to a club again? I see myself in the mirror, when my eye aren’t blurry, and I see someone who is too thin, and getting thinner, and I lament the stretch marks from the steroids and the weight loss with a sickening sigh. People say we all have scars, but when you’re still trying to win the battle it’s hard to wear theme.

My life, for the most part, is something I take as it comes. We don’t get to choose what happens to us, just how we handle it. I try not to be negative but sometimes it’s hard not to sink to a depressed place. For the first time in a long time, I’m truly scared. I can’t walk unassisted. I can’t use dangerous items like my stove. I have assistive devices scattered over the apartment, and people on call to stay with me when my roommate is gone because I shouldn’t be alone. I lean on “the guy” way too much, though he does offer, and I just don’t want to weigh him down with all the negativity I simply can’t control.

Being sick is one thing, being sick publicly is another. We all get tired of, “but you don’t look sick,” when we’re exhausted and turning down invites or leaving an event early, but having people notice your deterioration, can be even more jolting. I went from okay, to using a walker in 10 days. Most people didn’t see me wobbling before the hospital, and nobody in the complex saw me in the hospital. Showing up thinner, in a walker, definitely made an impact.

Now it’s just a battle of, “What it…” and though it’s a game I don’t want to play, the reality is that it’s a game I’m forced to consider from time to time.

Scared, Sick, Tired

Don’t Ignore Your Service Dog

So I’ve been casually seeing this guy, and when I spend the night I don’t always stay on top of grabbing something to eat in the mornings, or before bed. Lately I haven’t had an appetite at all, and since I haven’t been on steroids, the weight has been coming off massively. I didn’t really realize how little I was eating until recently, because honestly I haven’t been hungry. I was heavier than I wanted to be, and I’m at a nice weight right now, so it’s not like I’m unhappy with the weight I’m at, it’s just scary that I got here the way that I did, and it’s scary to know that I will continue to lose weight (rapidly) if I don’t eat more.

Anyhow, there are a lot of problems when you have no appetite, and an autoimmune disorder that makes you nauseas. First off, I have seizures, and while my medication works, if I’m not sleeping well, or eating well, I’m putting myself at risk for seizing. After two abysmal nights of sleep I was pleased that I at least got better sleep over the guy’s place than I had been at home the prior nights. Still, I’d eaten a whopping 400 calories for the entire day, and while I had noshed on a few potato chips at his place, it probably only got me to around 600, less if you consider calories burned.

I didn’t get home until almost noon today, which was later than I’d wanted. I was tired, and kind of hungry, but I had a ton of stuff to do for work, so I threw myself into working without even changing out of my clothes into something comfortable. I knew I wanted caffeine, but didn’t even stop to get my caffeine fix. My mind was on work…except my dog.

When I got PTSD 9 years ago, my dog stepped up in a big way. He learned to stop panic attacks, motivate depressed me out of bed, and check doors and windows if I was feeling twitchy. He also began to alert in the last few years to rapid heart rates associated with black outs, as well as begin to act funny during my pre-seizure auras. In the last few weeks I’ve noticed something else he’s on top of…low blood sugar.

So, as I sat there, trying desperately to get my work done, my dog was nudging my hand, whining, and licking my hands. I thought maybe he wanted me to move to the couch, but that didn’t do anything, in fact, me moving made it worse. I stopped what I was doing and did a body check. I wasn’t having an aura, so I knew I wasn’t going to seize unless I was about to have one totally random seizure which *knock on wood* has never happened to me. That’s when I realized it was pushing 12:30, and I hadn’t eaten more than a couple potato chips in over 12 hours. The last time I ate before that had been 12 hours before. In total, that was about 600 calories in 24-hours, with physical activity. I took stock of how I felt and realized I was kind of dizzy. I felt a little drunk, and confused, and was working slower than usual.

I ate a granola bar, with protein, and drank some vitamin water. I rapidly felt better, albeit nauseas because I wasn’t hungry but needed to eat. The dog, satisfied with himself, curled up under the blanket and slept while I finished my work.

People see me, and they’ll say, “you don’t look sick,” unless I’m flaring of course. (That’s when I’m told I look like death.) They see my little dachshund and wonder how he could possibly be a service dog…but he is. I need to remember he’s more in tune with me than I am sometimes, most of the time in fact, and I need to trust him to alert me to things I may not notice on my own.

I’ve been accused recently of having an eating disorder. Just because I’m glad that I’ve lost steroid weight, doesn’t mean I have an eating disorder. There is a huge difference between having an issue with food because your body doesn’t process it well, and wanting to be thin so you ignore the hunger. I rarely get hungry, and even when I’m hungry, I can only usually eat half of whatever it is I try and eat. I know I have that blocked celiac artery, and I’m sure it’s more blocked than the doctors think, because if it’s 60% blocked all the time, it must be more blocked when the vessels swell.

In any event, I feel like digestive garbage. Food doesn’t have pleasure for me. Lactose, gluten, alcohol, meat, and anything high in fiber? Yeah all of  that is out. I used to love salads. Now it’s a few bites and I’m in excruciating abdominal pain. Doctors push fiber so I can be regular, but anything with too much fiber and I’m doubled over and need prescription strength Imodium. This balancing act becomes such a pain that you double up on vitamins, and live off of bland foods because it’s the only way you can survive. I can eat like a normal person, or live like a normal person, but I can’t do both. I would love to eat at restaurants. Go on dates with guys and not have to explain why I’m only having a Sprite.

Anxiety obviously makes it worse, and I’ll admit that I do have IBS. My GI issues aren’t all Behcet’s related, though the bleeding isn’t necessarily a common thing in IBS patients. Still, the level of GI issues I battle? It’s intense.

So yes…I’m wearing smaller jeans. Half of my Facebook feed is congratulating me on the weight loss, while the other half is concerned. Me? I’m just glad my dog noticed my low blood sugar before my friend and I took off to buy new jeans. Passing out from low blood sugar is a drag. Seizing from it is worse. Doing either of those things at a crowded outlet mall by the California/Mexico border? Not ideal.

Apparently I should really be considering medical marijuana as a more regular thing instead of an occasional thing. I guess I’m still thinking about it as a drug drug, instead of a medication. It would be nice to be in a better mood, and have an appetite!

Don’t Ignore Your Service Dog