Governmental Nonsense and Way Too Many Tears

Getting affordable insurance is still insanely hard if you’re chronically ill and unable to work. Part of the problem is that getting disability is hard. If you have income, even if that income isn’t from working, and even if it doesn’t cover all of your bills, you’re sort of shuffled to the back of the line (or so it feels). Disability would qualify me for MediCal which is what I’m trying to get, but I’m $200 over the limit, and that’s enough for them. It doesn’t matter that I can’t pay my other bills, I’m over the limit.

They actually just suggested I decrease my alimony so that I would qualify. Are you kidding me? I’ve already expressed the reality that if my roommate didn’t cover so many of my bills, I’d be homeless already. 

I swallowed my pride and got the information for a charity that helps, and I’m hoping they can provide some help so I can keep insurance for a few more months at the very least.  I also need to talk to my ex at some point, and inform him that I’m changing banks. I emailed him but I don’t know which email he actually uses to be honest. (He has several from when he was cheating, that he still has activated, so it’s impossible to really know what is going on with that. I suppose I’ll have to text him, too.

Funny how part of the divorce agreement was me making sure he knew where I was at all times (phone, email, address), but I don’t get any of the same luxuries.

It’s odd being sick. I took an unexpected 3+ hour nap after trying to write this earlier, because I’d sobbed myself into incoherence. There is a hopelessness once you’re in the disability system. You’re lied to by the ease with which temporary disability can be obtained. When you realize your disability isn’t temporary, and apply for permanent disability, you’re struck with the truth. It takes forever, and the details don’t often make sense.

Now the best way to get MediCal, is to be officially disabled, but hey, fun fact, that process takes, on average FOUR years.

You want less homeless folks San Diego? Help get them enrolled in disability, of some sort, because many have mental health issues or physical issues that, if fixed, would allow them to work. Additionally, let’s get more drug rehabilitation facilities for those who want or need them, because that will also help. And build some affordable housing!

These programs that exist to help, they want you making less than around $1300 a month, which is a glorious theory, but completely unreasonable for San Diego. Now it’s 2am and I’m debating how peaceful my sleep will honestly be, given all the crying I did today (and that unbelievably ridiculous nap. People were actually worried because I just crashed so hard. I think I may have swapped my indica heavy and sativa heavy pens, because OOF.

And before people judge, medical marijuana is literally the only thing that stops the vomiting sometimes. If we find out my GI transit time is slow, but not so slow it can’t be managed, there is a chance I’ll be given IV access for nausea drugs. The only issue is that means life with a needle in my chest. I’ll also likely be running fluids (if I have a say) because drinking less means I can try and eat more, and more of what’s on my nutritional plan, but we will see.

Let’s hope tomorrow (well today), brings less tear inducing drama. 

 

Advertisements
Governmental Nonsense and Way Too Many Tears

Neurobehcets – When it Doesn’t Make Sense, but Does

Prepare yourselves for a little breakdown of my neurological funkiness, and what may or may not be related to the Behcet’s (but probably is). The reality is we don’t have a way of knowing exactly when my Behcet’s began, though likely in childhood. We also have no way of knowing when my neurological issues began with Behcet’s, though the thought process right now is somewhere in my teens.

My oral ulcers started in late elementary school, and we just figured I was a kid who got a lot of canker sores. I also got a lot of strep throat. Then in middle school I had these annoying episodes where one arm would jerk, and I would make a squeaking noise. I never saw a doctor, because it didn’t happen often enough to create concern, but it was annoying. (I would later be diagnosed with Tourettes, however, the occurrence is so infrequent, I never even remember to mention it in my medical appointments.) In my late teens I started to notice I had crappy balance.

This is where it gets important: the only reason I noticed, was because my friends pointed it out.

When we would all walk together, the ongoing joke, which was also the truth, was that everyone needed to walk on my right side. I tended to veer right, and if the group didn’t stay on that side, I wouldn’t walk straight, and would end up missing the conversation, or even trip. At 16 I’d torn a disc in my back (at the time we didn’t know the disc was injured, it took five years to get a scan, but that’s a whole different story). When I’d get wobbly or off, we just sort of figured it was back related.

Then in college, at 18, something scary happened. I got up out of bed, and my right leg was useless. I could move it, but I couldn’t really control the movement, and I couldn’t keep my foot up. A friend helped me get to the health center, where we found out I had no reflexes in my right leg. He hit my knee over and over and nothing. I was told I likely had a pinched sciatic nerve, aggravated from the prior back injury (which still hadn’t been scanned) and sent back to my dorm with crutches.

Yay student health systems! 

By 20 I knew I had something autoimmune going on, but my brain wasn’t really a concern. I had a seizure, but I’d been drugged, so the thought was obviously that the drug had induced the seizure. I developed PTSD, and future seizures were assumed to be psychosomatic. Except, they weren’t. I had also begun developing issues before my PTSD, where I would get dizzy, lose feeling and coordination on my right side, and begin to slur my words, or forget them all together. It was terrifying, and I’d often just have to sit in stores and wait for it to pass.

Eventually I saw a neurologist who misdiagnosed me with juvenile myoclonic epilepsy. The drugs made me sick, and my balance issues and lapses in focus continued. I would be okay, then have intense headaches and be stuck inside for days. Sometimes they’d say it was a migraine, but other times they couldn’t sort it out. There times when it was so bad I refused to go to the ER because I didn’t want to get up off the bed or floor. Once I dropped in the kitchen from the pain, and just laid there for nearly four hours.

A new neurologist saw me, and looped back to psychosomatic issues. They diagnosed the Tourettes which was random, but inconsequential with all the other issues. Thus began a decade of neurological struggles. Some neurologists believed me, others insisted it was a psychological issue causing seizure like episodes. We took videos of muscles spasms I couldn’t be controlling. We took videos of me trying to walk during episodes. We did whatever we could, but if it wasn’t on an MRI, they didn’t care.

I was actually blacklisted from a neurologist’s office because he was sick of me demanding that he figure out what was going on. Another told me I had MS, before later telling me he was wrong.

My current neurologist is amazing, and has stated that he believes my issues are 100% because of my Behcet’s, but he won’t diagnose neurobehcets because I don’t meet all the criteria. The only criteria I’m missing is sign of brain stem atrophy, or lesions. I’ve been receiving treatments since before neurological issues presented, and in fact, the neurological issues worsened and became noticeable, when I was on a hiatus from immune suppressing therapies.

I never really thought my neurological issues could be related to my Behcet’s, until I noticed the lack of coordination coincided with flares. Then I thought back to all the years, all the signs, and my heart sunk.

So now I’ve seen the new rheumatologist, and he, without a moment’s hesitation, declared neurobehcets as the culprit. True, I don’t have lesions (yet) or brainstem deterioration (yet), but isn’t that a GOOD thing? Even textbooks on the issue of neurobehcet’s have admitted that the criteria that exists is based on limited patient samples. Plus the reality is that it’s a rarer complication of an already rare disease. In my case, having the HLA-B51 subtype does put me at an increased risk of certain neurological impacts of the disease.

The question becomes what are my issues from NB (neurobehcets):

  1. Ataxia
  2. Seizures
  3. Fatigue
  4. Lack of coordination
  5. Muscle weakness (especially in heat)
  6. Hyperactive reflexes (makes anything that triggers involuntary movement in my legs extraordinary challenging to deal with. Shivering? Game over.)
  7. Headaches
  8. Autonomic neuropathy – which impact me thus far via:
    1. Issues with regulating heart rate and blood pressure
    2. Digestive issues, primarily lower GI issues involving intestinal dysmotility, and also aggravation of my gastroparesis
    3. Temperature regulating – this becomes a problem with things like hot baths/showers/tubs, or if I have a seizure. It’s normal to get warm during a seizure, but I struggle to come back down temperature wise. I also don’t get fevers when normal people do, sometimes. It’s frustrating to have a severe and painful kidney infection, but no fever. Doctors don’t tend to take you seriously

I’m sure that there are other issues I’m not even aware of, because I’ve just lived with them as they’ve shown up in my life. A friend was staring at me as I missed the keyhole several times. It’s normal for me. I didn’t realize until that moment, that most people can put the key, into the keyhole, without several bother attempts. I’d simply been doing it that way for a long time. The odd thing is, I never missed a vein when I was a phlebotomist, but I also would shake violently after each patient, and be exhausted after my shifts. I was also healthier at that time.

Acute NB tends to hit, and then go away. It can come back, but a course of heavy steroids, often IV, tends to knock it out. This is what was assumed to be happening when I was hospitalized a year and a half ago. Now, at the time, they didn’t know what was going on, so for six days we tried to deal with my heart rate being all over, from too high, to way too low. I couldn’t walk, because I shook to hard. When they stopped my Neurontin, my jaw locked shut. Finally they gave into rheumatology’s suggestion that we throw steroids at it, just in case it was related to an autoimmune issue. They’d done spinal taps, MRI’s, I’d coded, it was time to just do something.

Three days on IV steroids, and I was discharged with a walker.

I tried to point out that it was a classic acute NB flare, but because my spinal tap had been normal, as had what they could see on the MRI before I had my seizure in the machine, they refused to diagnose me.

As the steroids tapered down, the instability, and coordination issues returned. That was when I went to NYU, started Remicade, and then promptly ended up on Cytoxan.

Now I’m ready for my next round of IVIG. I notice the disappearance of the non-permanent neurological issues. I’ll always have ataxia, but the really obvious manifestations don’t come during the first 3 weeks of IVIG. The headaches are gone. Knock on wood but I haven’t had a seizure since starting IVIG, either. My hyperactive reflexes are permanent, but they appear to be limited to my legs right now, and mostly my left leg which makes sense. (My right leg is somewhat dumb from the back injury.)

I’m just happy to start over with a rheumatologist who is ready to fight as hard as I am. I loved my old rheumy, but her refusal to consider that I may have issues that were NB, because I missed the imaging to support it, was upsetting.

Why should I be forced to get sicker, when I’m clearly responding to treatment, and have all the symptoms of the disease?

Advocate for yourselves. Fight hard. The wanted to put me in a nursing home after I was discharged from the hospital. I had friends help me so I could get to NYU, and get options I wouldn’t otherwise have. You are stronger than you know.

Neurobehcets – When it Doesn’t Make Sense, but Does

Chronic Illness is Not Enviable or “Cool”, And Gastroparesis is NOT an Eating Disorder

A few years back, a seemingly healthy friend of mine, expressed jealousy over the fact that I could have my dog in apartments that were, otherwise, not pet friendly. I explained that he had been an emotional support animal, before I realized he could sense my seizures and heart rate changes. At that point he was trained to be both a medical alert dog, as well as a psychiatric service dog. (Back then I was struggling with some major side effects from PTSD. Today they’re under control, though I do still appreciate my dogs waking me up if I do have a night terror.)

She would, eventually, announce that she had PTSD as well, and promptly run out and adopt a “service dog” of her own. All of it was whatever, until she started trying to convince folks with very little, or even no, trauma, that they too, could have PTSD. Ever feel anxious in social situations? You probably have PTSD. It was absurd, and I told her as much. It was suddenly this popular thing. Emotional support animals were getting scrutinized, but psychiatric service dogs became a loophole. They’re totally legitimate, but seem to be easier for some folks to sneak through the system, which is just sad.

The breaking point came when my struggles with gastroparesis became extreme. This was prior to chemotherapy, when I was really thin. My frailness, something that prevented me from going out and enjoying life, became this enviable thing. Someone with an eating disorder clung to it, and decided that they could eat whatever they’d like, vomit, blame it on gastroparesis, and gain sympathy.

It worked.

I still didn’t really think much about it at the time, or even now, because we all have our own battles. What I did think about, and what I still become aggravated with, is this idea that gastroparesis is an eating disorder. After years of being accused of anorexia or bulimia, finding myself in that viewfinder again, was beyond aggravating. I wanted to eat, desperately, and I wanted to drink even more, but I simply couldn’t overcome the nausea. It wasn’t worth eating just to be sick. Some people with GP, will eat, and get sick, either because they want to attempt to eat, or they miss the taste of food, and a small percent I’m sure, do have true eating disorders on top of the GP. Eating disorders can also cause GP, but it can be reversible in some cases.

I am not in the reversible category, and I need people to accept that.

I have good days and bad days with gastroparesis, but it never goes away. A good day can actually cause a string of bad days if I’m not fully aware of what I’m consuming. My behavior may look eating disorder like, but the reality is I can’t digest as much as I may want. A good day means I’m not as nauseas, or I may even have an increase of collateral blood flow, letting me digest…but my GP doesn’t go away.

There is a condition called median arcuate ligament syndrome, or MALS. With MALS, the arcuate ligament runs in an odd manner, and causes impingement of the celiac artery. This results in a lack of blood flow to the stomach, liver, and some other stuff in that area. It can also cause compression of nerves. In a nutshell, you get abdominal pain, nausea, vomiting, lack of appetite, and all that fun stuff. Surgery helps some patients, but not all patients, and the theory behind this statistic is that patients who have nerve damage, will have continued pain.

I don’t have MALS…but I do have significant celiac artery stenosis. They can’t stent it, they don’t know what causes it, and it’s significant enough, that spasms from my vasculitis, could cause it to close off completely, worsening the pain, and gastroparesis episodes.

Except of course, doctors don’t love that conversation, because having your celiac artery narrowed to about 90%, like mine is, when you don’t have atherosclerosis, is weird. Also, even with atherosclerosis, the celiac artery would be an odd point of discovery. Some doctors agree, my celiac artery is the cause of the gastroparesis and other upper GI issues, especially when combined with my chronic gastritis. Other doctors refuse to even approach the subject. When MALS is understood, accepted, and still debated, being that one random patient with a bum celiac artery, tends to sort of become something that your doctors ignore.

I won’t wake up one day and be able to eat normally. I always have pain when I eat…always. Even friends who get excited to see me eat a meal, don’t understand the effort. I will have pain. I will have nausea. I may actually need to sit a certain way, use a hot pack, something, to alleviate the discomfort. Once we hit my intestines it’s really a toss up as to how that will go. There is always some pain due to dehydration, and the stool softeners and laxatives I’m required to take. Some sections don’t always work. Other sections are sometimes ulcered. It’s a fun time down there.

So when someone tells me that I will “heal” my gut as I move through my “eating disorder” like they did, I want to scream. 

Being sick is not something that gets you the kind of attention you might think you’ll get. I want love. I want to build a career and a life. Spending time in infusion chairs, ERs, doctors’ offices, it’s all just a lot of stuff that gets in the way of living life. Yeah, my wheelchair helps me get around, but now that I don’t live downtown, where will I go? You can’t put it in a car, so it leaves me stranded unless I take the bus, something I’ve yet to attempt.

I may start a day feeling good, go to an event, and end up with legs that won’t work. It’s funny how the people who seem to be disability envious, who suddenly find themselves with the same conditions, only have issues when they’re home alone, or want to hang out with friends who seem to have plans that they don’t have the ability to participate in for some reason other than their health. If you always feel healthy enough for parties, concerts, and other leisure activities, but suddenly seem violently ill to avoid obligations, or garner attention, I’m going to question your sincerity. I’m not talking about a recovery day (or week) because I know that one good day for me, when pushed to far, can definitely screw me up. It’s the people who seem to cling to the fringes of the disabled or “spoonie” communities, join somehow, but always seem to have luck when it comes to when their condition will flare up.

Today is a hard day, because I find myself bitter. I want this life I cannot have. This isn’t something positive thinking can fix. Most of the time I do accept my circumstances, and I work to find things that can make me just as happy, if not happier, than my original plans. It doesn’t mean I don’t get angry sometimes. When someone gleefully jumps into the sick people community, only to have oddly good luck in terms of when they’re actually sick, and when they’re not, I struggle to bite my tongue.

Be interested, be included, but don’t lie. Even a small illness deserves support. Hell, all people deserve support. You don’t have to fake being seriously ill to get it.

 

Chronic Illness is Not Enviable or “Cool”, And Gastroparesis is NOT an Eating Disorder

Port Placement and Panic

On the 11th I had my port placed. It’s funny, I’d spent months wanting it, but when the time came, I totally panicked. The idea of a catheter, just hanging out that close to my heart, suddenly had me second guessing my decision. The fact that some doctors were on board with the decision, while the others weren’t, didn’t help matters. In pre-op, the nurses couldn’t get a vein, so they called the IV team, they used an ultrasound, numbed up my arm, and went after a deep vein. The nurse told me that my veins are really small, and apologized for having to work hard to get into the vein. She also said I would be happy with my port.

I had to be at the hospital at 6am…but when I arrived, I wasn’t on the schedule. I hadn’t really slept the night before, so I ended up falling asleep and was taken to the pre-op area at around 7am. I still wasn’t on the schedule, but they said I’d go back by 9:30. 9:30 came and went, and at this point my anxiety is screwing up my vitals. The lowest my heart rate got was 99 bpm. My blood pressure was a mess, too. I didn’t end up going back until 1:30. By then, I was a mess. I’m begging for the versed, and worried that I’m going to just back out of the entire thing. There was a miscommunication between the nursing staff and myself. Basically I hate pain killers. They make me vomit, and I just don’t like the feeling as they wear off. Throwing up, shaking, cold sweats, it’s a disaster.

For some reason the nurses wrote down that I had a low tolerance to both pain killers, and versed. 

After several syringes, the frustrated nurse told me that I had a really high tolerance to versed, not a low one. I told her that I knew that. That’s when I found out, basically, that I hadn’t been given enough of either drug. I was a bit loopy, but totally coherent. The doctor started, and I hadn’t been told we were starting, and I felt pressure and blood.

It isn’t pleasant to feel your blood trickling down your neck.

The procedure went well, thankfully, and I went home, but panic was immediate. Every move that I made caused my neck or chest to twinge. I kept worrying that the catheter was going to stab my heart. I kept worrying that I was going to get a blood clot and die. I still am worried about the port, especially the blood clot issue, but I’m realizing how necessary it is. I haven’t had my infusion of fluids and vitamins in over a month. I am going in on Monday. It’s still scary to think about my port being accessed, but I need to get used to it.

I think part of the stress of the port, is feeling like I’m more sick. The port is going to improve my quality of life, but having it makes me feel like I have, “sick girl,” stamped on my forehead. If my gut wasn’t messed up, I wouldn’t need it. Well, I’d probably need it eventually for IVIG, but I’d have a while at least. Nobody will see it once the wound heals, unless I have it accessed, but it’s just a stressful situation for me personally.

I’ve met people online who seem to want to be sicker. They want the feeding tubes, the ports, the wheelchairs, and I just don’t get it. I’d love to fade into normalcy. I want a job. I want to drive. I want to go to a restaurant and eat something. I want my dogs to just be dogs, not dogs with jobs. At the end of the day, I can get back to most things. I may never be able to eat normally, but that’s okay, that I can work around. I would love to get IV fluids regularly.

Maybe it isn’t about getting back to how I felt before getting sick, but about learning to find ways to enjoy life and be happy with the life I’m living now. 

Port Placement and Panic

I Have a Cold…and I Love It

Okay, I know that seems odd, but there is a reason I’m in love with the fact that I have a pretty nasty cold. In the past couple of years, when I would get a virus, I would get a flare. The flare would inevitably be worse than the virus. Prior to IVIG, I had a headache, and I just shrugged it off. Behcet’s and headaches are just hand in hand for me. Then after IVIG I had what I classify as an IVIG headache. I felt just, well, sh*tty for a couple of days. That is normal, from what I’ve read. Even if the rheumatologist’s temporary coverage felt as though I should have made some miraculous turn around, I knew from what I’ve read, and what I’ve heard first hand from other patients, that it would take some time.

Then I realized I had a cold.

I was sleeping a lot, had a little fever, and attributed it all to the IVIG. Except, the sleeping eased up, as did the headache, and my nose was bleeding and stuffy. I blamed the weather. I had a migraine, which happens to me when the weather shifts. I blamed a lot of stuff because I didn’t want to believe the IVIG wasn’t working. This morning, it dawned on me. I have a cold. I have a gross cold, and my gastroparesis is acting up because my appetite came back, and I overate.

Folks, my appetite came back. 

I haven’t been hungry in months, and suddenly having that drive to eat again was so bizarre. I will always have gastroparesis, my celiac artery is blocked, and it can’t be opened. I also have a history of GI issues that just bogs the system down…but my intestines are moving again which is the main reason (I feel) that I wasn’t hungry. For me the delayed stomach emptying causes gastritis, acid reflux, and bloating/pain. The lower GI ulcers kill my appetite, cause pain and bleeding, and just generally make me miserable. That seems to be tied in more closely with the Behcet’s.

Beware: I’m about to discuss poop.

I have been pooping. Not as often as “normal” folks, but I am pooping. Prior to IVIG I was going 10-14 days between bowel movements, and those movements were pathetic. Nausea, pain, blacking out, just total brutality, for the smallest bowel movement. Doctors often accused me of “pushing too hard,” but I never pushed. Why push when there isn’t anything causing any urge to push? Lately I’ve been panicking when the urge to go hits me. It sort of comes out of nowhere, and is like, “YOU HAVE TO GO NOW!” Of course, it isn’t that dire. (Except when I ate a gummy edible containing gluten. I got horrendously sick, pooped my pants, and couldn’t figure out why. Later it dawned on me that gummy candy often contains gluten, so I checked, and yup, the edible was the culprit.)

My point is actually pooping is weird, and it shouldn’t be, but it is. I am torn between excitement and nausea. I’ve tried explaining it to healthy friends, but only a similarly GI sick friend understands it. When you just don’t go to the bathroom often, your body can’t really handle the sensation. My nervous system is so used to not feeling anything positive from my gut, that even a normal bowel movement is misinterpreted (at least that’s how it feels.) Hopefully with time I can get used to them again, and hopefully they remain consistent. Even going just 1-2 times a week is an improvement right now.

I have to talk to my rheumatologist about putting in an order for a port, even though I know she will fight me on it. The reality is that I’m existing in a state of malnourishment, or dehydration. The only reason I’m not currently losing weight is that I stay on top of calories, and my thyroid gave up working. It isn’t a healthy way to prevent weight loss, and I’m still losing loads of muscle. I can’t do my infusions 2x per week for fluids and vitamins, unless it isn’t an IVIG week. Even the week after IVIG is dodgy, since they have to use two different veins for IVIG (unless I go home with the IV in place. This is something I’m not comfortable with because of issues with phlebitis and clotting. I just don’t personally feel it is a good fit for me. I’m also sure my dogs would find a way to hurt it.)

The other issue I’ve run into, emotionally, is the expectation others have that I’ll be miraculously healed by IVIG. IVIG is a treatment protocol, it isn’t a cure. There may be a day when I can go off of it and be in remission, but going off of it is risky. With neurological issues involved, it just isn’t something I’m overly in a rush to test out. Some people spent their lives on IVIG. I will need medications for nausea, I will need IVIG, I will need my wheelchair at times (though hopefully less as time goes on). The damage done to my autonomic nervous system isn’t all fixable, in fact, some issues will definitely remain, and that is okay.

IVIG wasn’t about a cure. It was about survival.

I have a tendency to downplay the seriousness of symptoms when talking with friends and family. It’s something my family has a tendency to do. There are issues we still need to address with me cardiovascular wise that I put on the back burner. They’re likely related to the autonomic stuff, but we just won’t know until we look into it. The biggest question mark is the swing in my heart rate. I have some serious bradycardia sometimes, and it is sort of terrifying. I don’t think about it unless I’m on a heart monitor, and I’m setting it off, but it’s taxing on your heart to get super low, and then go back to normal or even into tachycardia. Again, I’m hoping IVIG fixes things by stopping the onslaught against my autonomic nervous system.

I Have a Cold…and I Love It

ER Drama

My flare reached new levels, and once I realized I couldn’t eat or drink enough to prevent passing out, I went to the ER. Actually, I went to the ER because of that, and some persistent lower left quadrant pain and bleeding. (I also spiked a fever which was present at my doctor’s office, but ran away in time for ER arrival. Thanks.)

The first ER I went to on Tuesday. They treated me like absolute garbage. I was accused of being a drug addict even though I explained my bad veins were the result of my Behcet’s and repeated sticks and infusions. Despite them having my chart, including an admission to their affiliated hospital a little over a year ago, I was repeatedly asked what drugs I inject.

Thank for making me feel worse about myself, and for avoiding the actual reason I’m in your damn ER.

So I wait, and wait, and they put in an IV but don’t flush it…like ever…which for me means it’s borderline useless. I’m in the waiting room, with at least 40 people, and the room is made for at least half that number. People are crying, coughing, the whole plethora of possibilities. For better or worse, I’m in and out of it because I’m just so dizzy. I want IV fluids more than I’ve ever wanted them before in my life. Then, I realize I’m going to faint. I’d been waiting for over two hours at this point, I’ve asked for zofran, but wasn’t given any. I had a partial seizure, and then another, and I realize I need to tell someone, but the triage nurse keeps disappearing into the back leaving all of us sick folks to fend for ourselves (unless you’re mobile which I wasn’t).

I manage to show him the word “epilepsy” on my emergency application on my phone. (During partial seizures I often know what I want to say, but I lose the ability to say it.) He understands me, but then does nothing.

Yes folks, I tell this man via pointing that I’m going to seize, and he just sort of acknowledges me, then walks away. Thanks.

The partial intensifies and now the whole room looks funky, and I’m overcome with this sense of fear I’ve never experienced. Usually I kind of just let go and let my brain and body do what they have to do, there isn’t a point in fighting the inevitable, but this time I really fought it. Perhaps not the best idea. I wake up in the back, and I can’t get nurses and doctors back on track. I get it, I had a seizure, but I don’t remember any of it. I offer to go wait in the waiting room again. I literally was like, “Hey, I know you’re busy, I’m still woozy, but I’m not here for this, so can we just get me back to waiting for my turn?”

I ended up leaving after six hours, with no fluids, no medications other than seizure drugs, and no answers.

Wednesday rolls around and I’m sent to another ER. This time they were much nicer, but things still got shady. My lab work was normal, but per my PCM’s instructions, I got steroids. Beyond grateful! There were some hiccups, namely they were out of small IV bags so they had to push reglan slow through my IV. Between the steroids and the reglan, I got massive jitters. I was told I was being admitted and that I’d be meeting with the rheumatology team at that hospital the following day. Then things got sketchy.

I was going to be sharing a room. Not the end of the world, but not ideal when you’re immune compromised. We get to the room, and I realize sleeping with the TV on means annoying my bunkmate. I told myself I’d use my phone. As I’m trying to process all of this, I realize that the nurses are confused. The other patient is on precautions! She’s coughing in her sleep, on the other side of a flimsy curtain, and the nurses scan’t sort out why someone on reverse precautions (me) would be in a room with a patient on flu precautions (her).

I am not spending the night in the hospital with normal labs, if it means sharing a room with a flu patient!

This kicks off a debate between me and the nurses. Why am I even taking up bed space? They can’t control my nausea adequately in the hospital because there is a limit on nausea drugs in terms of dosages. I metabolize them fast, and end up constantly nauseas an annoyed by it. I’m going to be sharing a room, while vomiting, with someone who has the flu? No thanks.

To be honest a large part of it was just steroid induced panic. Had they shown up and medicated me, I’d have been okay(ish), but it just didn’t make any sense to me. Why spend the night, try and talk to a whole new rheumatology team in the morning, and expose myself to the flu amongst other nosocomial infections?

I haven’t talked to my doctor since leaving AMA. Yes, folks, I left against medical advice..only not really. The only reason I was admitted was because my PCM was worried, but the labs confirmed I didn’t have sepsis (his worry) and the doctor who was in charge of actually admitting me agreed I was fine to go home. His superior didn’t want to take the risk, hence I had to sign out AMA.

Why would they put a reverse precautions patient in with a patient who was contagious enough that nursing staff had to wear masks around her? I know the hospitals are overrun with flu cases, but that doesn’t mean that chronically ill folks should have to forgo proper care. I do wish I could have seen a rheumatology team and perhaps pushed for quicker treatment via steroids and IVIG, but they wouldn’t have been able to approve the IVIG quickly. Also, three days of high dose steroids, in hospital, while sharing a room with someone highly contagious? That is such a bad idea.

The lesson is go to your usual hospital for these things. My doctor had hoped one of the two big centers could have placed my port, but that wasn’t going to happen either, not unless it was a prolonged admission with the start of IVIG included.

That’s been the last few days! I have phlebitis in my left arm from all the sticking, and I’m still sore overall. I have been able to eat fries and tots for some reason, but only in small amounts. Carbonated water and Sonic slushes have definitely been saving me, too. I said a lot of stuff this past week that I regret, most of it due to lack of usual medication, and the addition of emergency ones. I also couldn’t think clearly because of the lack of nutrition. Now I’m stuck in this place where I regret so much of what I said, but I can’t easily take any of it back.

I wish people understood that not everyone with chronic illnesses handles emergent situations the same way, and even people who seem strong on the outside, can fall apart in strenuous circumstances.

I suppose time will tell if friends forgive me and support me still. All in all it was a really rough week, and I’m glad that it’s over. I’m hoping I’ll get some good news next week, and that I find the forgiveness of my friends, too.

ER Drama

Operation Relocation?

**Disclaimer: I made a gastroparesis blunder today and overestimated the capacity of my system. Therefore, due to extreme nausea, this blog is being written under the influence of medicinal marijuana. I doubt I’ll edit it before posting. Hopefully my point is made.**

One of the harder parts about being chronically ill, is the financial strain. Even with good insurance, the medical bills pile up. Maybe your main plan has a low catastrophic cap, but what about vision and dental? In my case there is also the reality that I’m the only one that is capable of bringing money into the home. Yes, I get alimony, but along with the finalization of my divorce, comes the reality that I’ll have to pay to keep insurance, and that excludes vision and dental.

Inhale.

The reality of my current state is this…working isn’t possible. Lately walking the dog around the block has been a victory. That victory is short lived because walking the dog wasn’t the only task for the day, and now I’m exhausted. I’ve been waiting on disability, but could still have to wait over a year for my court date. What is a person supposed to do when they’re disabled, but can’t get disability?

I have a credit card that was maxed out between my knee surgery, and chemo. I’ve reached the very end of the road when it comes to pretending you’ve got everything under control.

People can tell I’m faking.

Relocation has become a hot topic, because where I currently live (San Diego) has a high cost of living. I, personally, don’t feel like I have a ton of other options. I have a large service dog, a small retired service dog, and no income aside from alimony. There is nothing in San Diego I can afford, and not many roommates are willing to tolerate the dogs. Family has implored me to move back east, but for a variety of reasons, including all that snow, I’m not sure that would be a responsible choice.

Recently I was offered the chance to live in my aunt’s condo, rent free, in Florida, from May through November. My first thought surrounded the word “free,” but the following thoughts were full of pros and cons. I have made a list, on my whiteboard, and they are exactly even as of right now. Medically there is the fact I’d have to find all new doctors, comfortable with Behcet’s, and then find new ones again because I’d only be there for six months…

Okay, enough about me.

I’m not the only person who faces financial stress because they’re chronically ill. How many homeless people have you met with severe mental or physical disabilities? They didn’t just decide to live outside one day. Society needs to do a better job of helping those who cannot reliably work. I could get a job tomorrow, but I would lose it by next week. I don’t know what days I can eat and what days I can’t. I don’t know when I’ll have severe pain, or nausea, and be unable to make it into work. This is something most of us “sick” folks deal with.

My friend was lucky, she worked for a grocery chain that let her work when she was well, and accepted her absences when she was gone. She didn’t make much, but it made her feel good to be working. When you’re not working, it can become depressing, You want to be contributing. So why don’t we have something for the chronically ill that allows them to work when they’re able, and receive disability benefits regardless?

The assumption is that tons of people abuse the system, and file for disability or other benefits because they’re lazy. Maybe some do…but the process of being approved for disability is beyond broken. I have friends who have been in the system for 3-4 years, while they have bones literally fusing their spines and ribcages. This friend would still work on good days, because she likes feeling fulfilled. That doesn’t mean she isn’t disabled.

Think about it like this: you have a system designed to provide financial assistance to people who are unable to work do to a disability. The reality is that some of those people would work when they felt physically able, but the amount of work they would be able to do would never be enough to provide for them financially. So, instead of working, they wait for their disability benefits. The limited funds must be carefully regulated, so they wait a long time. What if the government realized that those of us who cannot work enough to financially provide for ourselves or our families, could still work in some capacity? Couldn’t we have the chance to work within the disability system itself?

I am great at office work. I am amazing when it comes to organization and filing. You need a friendly face to greet guest at reception? That person would be me. It just may only be me for 2-4 hours at a time. It also may only be me a day or so per week, with gaps in between. I want to contribute, I want to be part of something bigger and better than sitting at home, or at the doctors office. I think most of us who are chronically ill, want to still have a purpose that we pursue.

Some have been lucky to have family and friends to stay with during their financially challenging times, and I’m not saying this as a slight to my friends or family, it’s just something worth noting. There are people who, for whatever reason, rely on themselves during the challenging times, and it’s definitely an anxious thing.

Social programs need to step it up, because they could be so much more, and they could help so many more people. In the meantime I’ll just be figuring out whether it’s time to relocate. It isn’t an easy decision, sick or not, and it’s something that is really weighing on my mind.

Operation Relocation?