When You Just Can’t

THERE WILL BE A TRIGGER WARNING ABOUT 1000 WORDS IN. PLEASE, IF TALK OF SELF HARM OR OTHER RELATED BEHAVIORS TRIGGERS YOU, DISCONTINUE THE READING AT THAT POINT. THANK YOU AND KIND THOUGHTS ❤ 

Today I’m somehow depressed, but more positive. I don’t know if that makes any sense. The best way I can describe it is chemical versus rational. Chemically I’m out of whack, but that makes sense. I haven’t been taking in a ton of calories, which led to me almost getting a period. Let me explain…

Your average female who menstruates, thinks that underrating results in losing your period…and it does. There is also a reverse mechanism though. TMI alert…I have an IUD. When I first got it I was not pleased, I basically spotted for a month, had terrible cramps, and wanted to punch my gynecologist in the face. (For starters, he gave me a generic version of Mirena only approved for 3 years, not 5, but told me he was putting in Mirena. It was super fun finding out that I got something else after it had been inserted. (Bonus points for the fact that he had opened my cervix, realized he forgot something, and had to open my cervix a second time. Don’t worry, he’s not my doctor anymore.) After a month though, my periods stopped.

This was 2.5 years ago. Since then I haven’t really had a period, which given my brutal periods, was a good thing. When I started getting really sick, right before starting Cytoxan, I hemorrhaged. I brushed it off as a really bad sudden period, but when it happened a few more times, I went into my gynecologist. At this point in time I was around 120 pounds, and I’m 5’10”. I went in, and the first thing my gynecologist told me was that I had lost weight and I looked good.

I was so malnourished at this point, my hair was falling out, I was growing white fuzz on my body, and I was literally incapable of warming my feet and hands. I looked like I was dying, and I felt like I was dying, and yet this doctor had the nerve to say I looked good. What the…

As we have established, he’s not my doctor anymore. What he told me made sense though. I can’t have estrogen containing birth control because of a family history of blood clots. With my one artery being potential impacted by Behcet’s, there was also an increased worry over whether or not I was personally at additional risk from the Behcet’s. I was informed that my body was suddenly producing extra estrogen in an attempt to instigate hunger, because I wasn’t taking in enough calories. These bursts of estrogen were causing intense bleeding. Fair enough, but still aggravating. Plus…if I looked so great, why was my body willing to risk bleeding like that in order to cause hunger pangs?

I really should have reported him. We all have different preferences and visions of beauty, but as a medical professional your focus should be making sure your patient is healthy. I had lost a significant amount of weight, and was no longer at a safe weight for my height. Perhaps my slender frame was normal in his life, but it was something that warranted investigation as my physician. 

I’m lucky right now. My doctors noted the 30 pounds I lost, because while it was fine to lose it, and while I’m still in a healthy weight range, and could even lose more weight, the quickness with which that weight came off was NOT healthy. 30 pounds in 30 days is not a goal.

So tomorrow my wheelchair comes. Today I did nothing. Every time I stood up, I got shooting pains in my head, neck, and lower back. They have never found the source, and have suggested dehydration each and every time. Given that I haven’t gotten my infusions in a while, that’s 110% true. I am dehydrated. Still, these headaches and related back pains, just murder me in terms of movement. I’ve also just been weak. As embarrassed as I am by the thought of the chair, I know that I’ll be able to go get things for myself again, decreasing days like this were I’m struggling. (I can’t afford delivery of groceries right now, and I can’t tolerate water no matter how hard I try.) I wanted to go see people today, but I was stuck inside. I struggled to even take my dog out. Thankfully my roommate took him out just now so I don’t have to attempt to navigate the streets tonight.

Chronic illness is a lot of fighting, but it’s a lot of acceptance, too. When I started the signs of bleeding today, I faced the fact that, even though I wanted fries, one sleeve of fries and two pieces of toast in an entire day, is just not enough to live on. I forced myself to eat maple syrup today even though I desperately didn’t want it, because I knew it was calorie dense, and liquid. I put it on toast as a sort of pseudo french toast.

Again, it wasn’t good, and I don’t recommend it as a fun treat. It did what it needed to do, and that was the point. Gastroparesis changes how you see food. It’s fuel, but it’s also something you kind of chase impulsively. If I know something won’t make me vomit, or writhe around in horrid pain, I’m going to eat it. 

My failure to get out and do anything today, the pain, the fatigue, the anxiety over the chair, I logically worked through each thing…but my brain chemistry felt like it still need to give me a little shove via depression. I have depression and anxiety because of my PTSD, but I suffer because of the major depression from my Keppra. How do I know? The symptoms are so different. With things relating to my PTSD, talk therapy, thinking through the situation, finding routines, they all help with the symptoms. Plus the symptoms are less life limiting. Sure, I’m startled easily, hyper vigilant, and can’t handle some situations, but I’ve come a long way via cognitive behavioral therapy, and conventional talk therapy.

Major depressive disorder doesn’t care how much you talk…

Trigger Warning: Below there is talk of self harm and suicide. If you are triggered by discussion of this subject please discontinue reading this blog. If you or someone you know is thinking of suicide, please call, text or message, the suicide hotline (in the United States. I apologize as I don’t have information in other countries. I do believe 999 is emergency services in the UK, and 000 is Australia.)

Suicide Hotline: Call 1-800-273-8255, Available 24 hours everyday, there website is https://suicidepreventionlifeline.org

 

______________

One thing my major depressive disorder causes, that my PTSD and related anxiety/depression never caused, is really obsessive suicidal and self-harm thoughts. I have had thoughts of both in the past as a result of my PTSD, and medication decreased those thoughts, but they were never as intense as they are with the major depressive disorder. I will become immobile, just stuck in bed. Then I’ll drag myself to the shower, and just climb in wearing my clothes. I would look around and just see items I could hurt myself with, or even kill myself with. Living 24 floors up when your meds aren’t sorted out, is a real test of self-control. Thankfully I talked with my doctors, and we began a treatment plan.

Today was just one of those weird days where the meds worked, but not well enough. I felt worthless all day. Financial struggles caused me anxiety, but the inability to socialize was the worst. I’m generally okay with being introverted, but when my medical issues make it impossible for me to go out, it creates a small crack for the botched chemistry to spill out of. There is something so bizarre about feeling utterly worthless, feeling like you should just run into the woods and never talk to anyone again, but also recognizing the irrationality of that thought process.

Thank you biochemistry for the gloriously f*cked up mess, that is my brain on Keppra.

To be totally fair it wasn’t normal before the anticonvulsant came into my life, but it was manageable without medication. I am not embarrassed that I need medication to keep myself safe. There was a time when I was ashamed of my thoughts. I didn’t want anyone knowing how violent and real they were. Now I realize the importance of recognizing the severity of that thought process, and the need to ask for help.

Chronic illness warriors, spoonies, sick people, whatever label those of us choose to use, tend not to be folks who really love asking for help. We’ve been in the hospital. We’ve had to call nurses every single time we had to go to the bathroom. We’ve eaten bad hospital food. We’ve gone through painful procedures.

We are conditioned to prove our independence…so if we ask for help, we probably need it badly.

That was today. I don’t feel well, but I’m also oddly at peace with it in a rational sense. I can tell you why my stomach is messed up. I can tell you why my asthma is flaring. I can’t tell you what this headache combination is, but I can tell you that it’s probably related to the fact I haven’t had enough to drink today. Now I’m going to take a nice bath since last night’s bath was ruined by a lack of hot water.

If you are reading this, and you’re realizing that you have a logical side of your brain that shouts over that illogical biochemistry induced portion, I’m sending you a gentle hug via our phone/tablet/computer/whatever. You’re not alone. Focus on that little rational voice shooting from the back, it’ll guide you on the right path. 

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When You Just Can’t

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 🙂

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