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.


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?

To Port or Not to Port…and how to ask the question!

During Rituxan, my nurses had noted that my veins were incredibly difficult to work with. This wan’t news to me. Every time I would go in for blood work, it would take multiple sticks before they accessed a vein. The only veins that work for me, are the veins in my hand. There are two exceptions, but neither is practical for every procedure or blood draw. The first exception is whatever sorcery the EMT’s and paramedics use. The only thing I can think of is that while I’m unconscious, or actively seizing, my veins become more prominent due to muscle contractions, and an elevated heart rate and blood pressure. They usually have to stick me at least four times, though, so it isn’t a total win even though they can get that one pesky arm vein. The second exception was what happened during this past hospital stay. After one nurse missed twice, and a second missed once, they asked for a doctor to help. The  doctor missed twice with an ultrasound machine as guidance. This was extra fun because of how deep the needle was during the process. I’d also been given nausea pills that hadn’t really worked, and no pain medications or fluids because, duh, no IV. They were drawing up IM medications when the special IV team arrived. They used another ultrasound machine, and even they struggled, but managed to get it in to a deep vein in my forearm. Luckily they used lidocaine that time, so it didn’t hurt nearly as much.

When I told the doctor that we were in the process of beginning IVIG, she said that it would be a good idea to get a port. I agreed with her, but admitted I was worried. Port maintenance isn’t a huge pain, but I do have vasculitis. I guess my fear is that the existence of a port, potentially increases my risk of blood clotting. (Granted you use heparin to prevent clots from forming, but still, terrifying.) I’m also afraid to ask my doctor.

If I had a port I’d have the option of administering IV Zofran and Phenergan, which would be an enormous help. Right now I’m using medical marijuana way more than I want to be using it. Having to use it multiple times, per day, just to function, is no way to live. I process nausea drugs quickly, so having a fall back option, like marijuana, is the only way I can be sure to avoid vomiting, and is the only way I’m able to consume anything at all. We could also talk with GI about home IV fluids, including banana bags to supplement all the vitamins and whatnot that I’m not getting due to my dietary restrictions.

Previously my doctor made it clear she doesn’t order ports for her patients, as most issues are temporary. I went through chemo, without a port, and it was hell on me and the nurses. Multiple nurses stated multiple times that I should have had a port placed. I was also not allowed to schedule any of the last spots of the day, as it took a good 20-30 minutes each time to find a useable vein. They couldn’t use hand veins, so we always used this same vein on the side of my thumb. It got really aggravated by the end of the six months, but could still be used. As an IV placement, it sucks though. It’s blown several times, and curves over 45 degrees.

I’m just anxious about asking. I’m also anxious about people looking at me weirdly. It’s easier to hide than a wheelchair, obviously, but it’ll still be there, and people may still ask. What will people I date think? How will I even be able to date? I could show up to most dates without a wheelchair, unless they wanted to go for a stroll afterwards. What happens when the time comes for them to see more of me, and this lump is right there by my collar bone?

It’s all hypothetical, of course, and I doubt my doctor will even okay the port…but I anticipate it is going to be necessary if and when we do IVIG. I just don’t have a good vein for it, and if we’re going to be doing it every 4-6 weeks, and if there is blood work like I’ve been getting, it’s time. Every ER doctor and nurse, has wondered why I don’t have a port. I’ve never had a valid answer other than, my doctor doesn’t think I need one.

I know myself. I’ll be anxious if it happens, and anxious if it doesn’t. If I do get one, I’ll be self conscious for a while, then snap out of it. The same goes for the chair. Maybe I wanted one with normal wheels instead of a power chair, but anything is better than my current situation, and I can always make it my own, make it unique.

Also, I’m 1/4 of the way to my goal on You Caring. I can’t wait to reach my goal, keep insurance, and kick some major Behcet’s booty!

To Port or Not to Port…and how to ask the question!