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. 

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Port Placement and Panic

Vitamin Infusions, Movie Plans, Poops (Literally Talking About Poops)

So I was able to get my next round of vitamins today, which was good because I was seriously dragging. I went to bed last night at 7pm, was asleep before 8:30, and could have slept longer this morning had my dogs not made it clear that they were ready to get up. Still, I got a solid 12 hours or so. I had planned on seeing a matinee today, Star Wars, but still felt too sluggish to make it. (My infusion was at 11:30, and the movie started at 3:40. I had hoped, well let’s be blunt, that I would need to poop after the infusion. Sadly, I didn’t get that urge, which was something I had gotten the last two times.

Living life chronically constipated, kind of really sucks.

I used to have issues with diarrhea, and I remember always thinking anything had to be better than running to the bathroom all the time. Then I learned how much not being able to go, seriously sucked. Turns out when you’re constipated, but can only form a partial obstruction, you get diarrhea around the backed up stool. You don’t know fun, until you have the pain of severe constipation, with all the added horror of having diarrhea (sometimes even in your pants.)

We haven’t found a good option for handling this, because I’m a walking contraindication to conventional treatments, and a walking example of all things that can cause diarrhea. When someone can drink half a bottle of Miralax, and not go to the bathroom, you know there is a problem. I recognize that moving more would make me go easier, but I cannot move as much as required because I’m so fatigued and nauseas. Lately I’ve decided the gas is worth it, if it gets things moving, and I’ve started eating dairy. Dairy, for whatever reason, seems to aggravate whatever is causing the GI bleeding.

So, do I want to bleed but go, potentially bleed but not go, or not bleed but definitely not go?

Life is fun.

Back to the movie…with my luck I’ll go, but then suddenly get the urge to poop. This isn’t an easy thing to deal with. First, let’s say I do actually have to go. Going in public isn’t easy for me, nor is going after being stopped up. There is also the risk that the urge doesn’t result in actually going, but does cause bleeding. Biggest issue, for me, is that I’d be buying a ticket, and missing some of the movie. This is Star Wars, and I am a nerd. The only reason I haven’t seen it yet was because of how sick I was feeling, and how sick people in general have been. I can’t imagine sitting through an entire movie with a mask on, so I had to wait.

Tonight, at 7 or 10pm. I’m not being hard on myself, though. I fatigue, nausea, or pain, become too much, then I’ll see if I can see it tomorrow. This is an autoimmune disease. My body is attacking itself (or so they theorize anyhow). How I handle it is how I handle it, because my disease is my disease. What works for me, may work for others, but ultimately each of us needs to figure out what our treatment plan looks like.

During chemotherapy I explained to my mother, that chemo patients are all different. Even two people receiving the same drugs, can have different sets of symptoms. I lost my hair, largely because I was severely malnourished prior to chemotherapy, and I had tapered off very high doses of steroids. The combination caused hair loss, including bald patches, ultimately causing me to decide to shave my head. I also had major issues with nausea. This was likely because I had severe nausea prior to chemotherapy, and had begun to eat different foods during chemotherapy. I also was much more susceptible to the drug than we had expected. I ended up with very low red blood cell counts, platelets, white cells, everything. The doctors were floored, and I was given less of the drug during my next infusion. I had been expected to get an increased dose, but that would never need to happen.

So hopefully I wil have more energy, less nausea, and less GI pain. Hopefully I will go see a movie that I have been waiting weeks to see. Hopefully I will be in a relatively empty theater, so I don’t need to wear a mask the entire time. Hopefully the people working won’t give me grief over my hot water bottle, so I can hopefully get abdominal relief, and back pain relief, through the duration of the film.

May 2018 is the year of “hopefully,” and I’m okay with that.

I told myself 2017 would be the year of treatments, and remission. I set myself up for a let down. So, while I’m hopeful that IVIG will provide me with good results, and less side effects, I recognize that nothing is 100% certain. I can have hope, without losing all rational thinking. Hopefully IVIG will work, and hopefully I’ll need less assistive devices. Hopefully I can get back to working. Hopefully I can throw myself into self improvement, and socialization.

Tonight it starts with hopefully seeing a movie. Tomorrow is another day.

Vitamin Infusions, Movie Plans, Poops (Literally Talking About Poops)

Inhale, Inhaler, Asthma, Weed?!

Disclaimer: The information below is not meant to be medical advice. What works for me, is what works for me. You should consult your physician to get information and guidance on what would be best for you and your situation.      

_______________________________copingwithbehcets________________________________________                       

I’ve gotten a lot of judgment for my use of medical marijuana, so I thought a formal blog addressing it would be a good idea. Today I was reminded that I should address it, because I had to use my nebulizer for a severe breathing attack. I was using the carpet cleaner to clean up my roommate’s dog’s urine. (She has what I like to call “on purposes” because she doesn’t accidentally pee…she just pees.) Anyhow, the spot was quite saturated, and as I got it clean, I started coughing. Really coughing…and then the thick mucous came up.

Have you ever coughed so hard you can’t inhale? You’re coughing and coughing until your body decided maybe vomiting would be easier.

Luckily I didn’t vomit, but it was close. I spent some time on the bathroom floor recovering, but still couldn’t breathe well. I dragged my nebulizer to my room, hooked it up, and instigated the opening of the airways. This meant more coughing, more spitting things up, but ultimately finding oxygen.

Then the steroid jitters kicked in.

The good news was that I was able to finish some of my homework. The bad news was that the shakes continued until the nausea became unbearable. I took the last Zofran tablet in my possession, crossed my fingers that I could get a refill ASASP, and waited for it to kick in.

The thing about severe nausea, especially gastroparesis related nausea, is that staying still and trying not to think about it, doesn’t make it get better. The discomfort grows and grows. 

In the ER I’d beg for IV Zofran immediately…but at home, I don’t have that option. When I hit that wall where I know I can’t go more than a few more moments without vomiting, I reach for the marijuana.

But you said you had asthma?!?!

Yes, I do have breathing difficulties. Perhaps smoking marijuana isn’t the best thing in that situation…but all medications have side effects. First and foremost, I don’t smoke marijuana. It is too harsh, and always causes me to need my inhaler. In a pinch I’ll have someone shotgun me some, but it isn’t the preferred method. I use a vape.

I use a high end vape.

Truth be told, I need to replace the screen, but the biggest thing is that I control the heat, and the filtration is amazing. Within a few minutes my nausea is gone, and I don’t cough, choke, or need to use my inhaler. My doctors who are okay with medical marijuana, are okay with my methodology, though they would prefer I use edibles. The issue with edibles for me, is the same as the Zofran situation. I need the drug to work fast. Plus my digestive system is slow and inefficient in general.

They do sell  ODT Zofran that does act faster, because it dissolves under your tongue.

The reason I don’t use the ODT option is personal, so please don’t assume you’ll have the same issue that I have. Since I am generally dehydrated, my mouth is almost always dry. This isn’t related to vaping marijuana. Even if I haven’t vaped in days, my mouth is like cotton. The ODT therefore takes forever to dissolve. I also can’t tolerate the taste. Most people find it pleasant, but when I’m in a position where I’m going to vomit, the only thing I can tolerate is the taste of peppermint. Usually I pop an Altoid, or put peppermint oil on my lip, after vaping. I really can’t taste anything else when I’m at that level of nausea.

If I had a port, I would smoke a lot less marijuana. I have a nothing against people who use it medically or recreationally. Prior to using it myself, I thought it was stupid, and while I do know folks who have faked medical conditions to get their medical marijuana card, I also have seen folks like myself who do really need it. For the first time in a long time, I learned what it was like to go out, and not have to worry about nausea taking over my evening. If I use the right strain, I can conquer my stomach, and drink water, or work on homework. At the moment the strain I have was cheap, but insanely strong. It works, but it is making me just a bit too relaxed to focus on anything remotely complicated.

So yes, I have asthma, and I use marijuana. I am in no way endorsing this practice, or saying that you should vape if you have marijuana. My current situation makes medicating me difficult. There is no option for my gastroparesis. There is also no real option for my Behcet’s, though we may attempt IVIG. Right now I’m just popping mycophenalate like it’s candy, even though I could never eat actually candy without getting seriously ill.

Inhale, Inhaler, Asthma, Weed?!

Realizing I’m Not Procrastinating…and It’s Okay

So I’ve been trying to do homework for the majority of the last few days. I will get some done, but inevitably fall asleep, or lose focus. Prior to getting really sick, this wasn’t an issue. I could watch complex shows, and catch on quickly, every single time. There was no such thing as me not being able to focus on an assignment. Sure, I’d procrastinate, but when I sat down to actually do the assignment, I’d do the assignment. Today, I sat down to do the assignment, and I simply couldn’t answer more than one question at a time without requiring a break equal to the amount of time I put into answering the question…or even longer.

I’ve had to accept a few things about this whole prospect. The first thing is that I’m under an insane amount of stress, and that stress breeds an inability to focus. Even if you want to focus, and aren’t actively thinking about bills, and you know, dying alone…you’re still stressed somewhere in the back of your head. Oh anxiety and depression, you spiteful little bitches you. The second thing, that is really important to acknowledge, is the sheer amount of medication required to keep me alive. Some of which causes sleepiness, while others make it hard for me to sleep. Even the marijuana I use for nausea can make me lose focus. Of course without it I’d be throwing up, or focused on trying not to throw up, so I guess that is a matter of perspective. Fourth, I’m not eating normally. My GI motility has seriously taken a nose dive, and this makes me bloated, nauseas, and unable to provide myself with proper nutrition. Lastly is just flat out brain fog itself, as a result of the nutrition, but also because of my brain.

I have a neurological condition, and sometimes the most basic activities require more energy for me, than they would for the average human. My brain itself is also not running on all cylinders.

When my muscles are fatigued, or weak, I have to really focus on not falling over. When my balance is off, which is always, I have to deal with the same thing. I stopped to really think about my movements the other day, by watching how other people moved, and I was forced to admit that I really do walk differently, hold things differently, even sit differently. A lot of what I have to do, takes more effort, and therefore makes me more  tired. Therefore…my brain is just spent.

Brain fog itself is a problem. They don’t know what causes it, or why, but some of us folks with chronic illnesses, just lose our abilities to focus. It used to be every so often, but lately it’s more often than not. When someone tells me I’ll like a show, I have to say I’ll watch it, but then admit to myself it’ll take a special situation for me to actually watch it. I don’t want to miss things, or not enjoy it, simply because I’m working hard to focus on it. The last time I watched a show I actually enjoyed, I fell asleep during the second episode. People assume that means I’m not interested, but the reality is the opposite. I get so interested that I’m trying harder to focus, which results in my falling asleep, or losing focus. Literally can’t win!

So, now that this is done, I shall go back to trying my best to finish some homework before bed. It’s hard because I used to be the night owl who could write an essay in an evening. I don’t know how to adjust to being the student who can’t stay awake, and has to plan out her coursework meticulously in order to get things done on time.

 

Realizing I’m Not Procrastinating…and It’s Okay

Grieve and then Grow

I woke up today several times. It was one of those mornings when nausea wakes me up, so I handle it with medical marijuana because it’s the fastest working thing that won’t increase my seizure risk…then go back to sleep until it returns. My rheumatologist messaged me back and basically had said that I needed to see my primary care doctor, or go to urgent care/the ER. My primary care doctor didn’t have openings, and urgent care is closer.

At this point I know what I need…fluids and nauseas drugs. I also know the reality is I need something to make this flare go away. Nothing is going to make this flare go away, at least not anything that can be reasonably sustained over a period of time. The ER this time of year is a just a pile of germs, especially after a holiday weekend, and unfortunately urgent care wasn’t much better.

The first doctor was sort of baffled by my symptoms, and wanted me to go to the ER and be admitted to the hospital. She recognized what I already knew…anything they did today, was just going to be a stop gap measure. I needed treatment of the underlying cause, not just the symptoms. Preaching to the choir doctor…but I’m not going to hang out in the hospital while confused staff rheumatologists go through my charts and realize we’ve tried all of the conventional stuff. She also said the marijuana could be causing my constipation. The day I used the most was the day I finally went to the bathroom, probably because I was able to drink enough water that day…

So she gets a bit flustered and says she can’t make me go to the hospital, and I ask if I can get fluids and nausea meds there (in urgent care) and she says yes.

Let the process of trying to draw my blood and place an IV commence…

Look, I have bad veins by all standards, but toss in the vasculitis and even the best nurse is going to struggle. They manage to get the IV in, but drawing blood requires two nurses, because one has to keep the needle in place while the other swaps tubes. I also bleed super slow, so that was making it extra fun. After this point a new doctor comes in, because of shift change, and he’s a laid back guy. He agrees I’m flaring, contemplates trying a different steroid, but after talking about my prior issues with steroids (needing super high doses for any sort of efficacy) he agrees that my original plan makes the most sense. Get the fluids, check the labs, and switch over to a high fluid diet in lieu of solids. It’s better to eat ice pops and Jell-o, than to end up in the ER because I’ve had solids but no fluids.

When you’ve been sick for so long, you learn to sort of gauge what the right response is to whatever symptoms arise. It’s only when something new pops up, that you’re truly thrown off. My doctors, especially ER doctors who haven’t seen me before, are going to struggle a bit to process what the best course of action is. I get it. If I were any other patient, you’d keep me until I had symptom control. I won’t get symptom control that can be extended after my exit from the hospital. It isn’t a pessimistic view, it’s reality. At this point in time, there isn’t anything they can do for me during an admission, that is going to extend beyond 1-2 w weeks post admission.

That is the depressing part. I want a normal life, LA with my friends for the holidays, ice skating, and running around the beach. I want to join a sports league in my city, so I can meet new people, and bowl!

Could I bowl? Absolutely. Could I plan in advance what days I would be physically able to bowl? No. That is the part that sucks. I am normal, but I can’t be normal. I want to work, I want to buy things on Cyber Monday, and I want to make holiday plans. There are so many things my friends and family members are doing, that I just can’t, at least not consistently.

This has been the struggle with disability. There are some days when I am able, but other days when I need medical intervention just to obtain adequate hydration. I don’t get to choose which days are which. I can choose when I get some of my medical procedures, but again, that doesn’t guarantee what days I’ll feel what way.

It isn’t all, “I hate my life!”

One thing I’ve been wanting to do lately, is bring people together who struggle with chronic illnesses. I am optimistic, and I do cope, but I definitely have days when I just can’t, and that is okay! Kick, scream, cry, do whatever it is you need to do. Embrace the anger and the sadness. Why? You need to make peace with the negative parts of your illness. I always thought it was black and white. That if I was pessimistic, at all, I would be giving power to the disease. The truth is that we can’t be honestly positive, until we have embraced the things we’ve lost to our diseases.

How can I appreciate the interest I’ve found in investigative forensics, unless I own the fact that I’ve lost my ability to really be in a laboratory environment on a consistent basis? How can I appreciate the absolute amazingness of my friends who have stood by me, or have come into my life during this difficult journey, until I grieve for the friends and family that I’ve lost because they couldn’t handle my illness?

Turn the losses into gains, by acknowledging just how beautiful your new circumstances are…because they’ve grown from the loss of something else.

Grieve. I grieve the loss right now, of my ability to do the things I would normally do this time of year. I grieve the opportunity to join a sports club. I grieve for my financial losses. I grieve because it’s natural, and because I know that I will be able to connect these losses together once something beautiful has grown up from their roots.

I don’t believe that everything happens for a reason, but I do believe that positivity allows you to make sense of the things that have happened in your life.

Grieve and then Grow

Crying With Sadness and Joy

Today I had my rheumatology appointment. It was kind of a big deal because we’ve basically tried everything remotely reasonable at this point. We’ve established I cannot tolerate azathioprine orally. The drugs they use for active ulcers and retinitis, don’t work well for neurological or GI symptoms. I’ve developed antibodies to biologics, or at least developed the reactions you’d expect one to have with antibodies. Either way, I can’t have them anymore. Six months of chemo brought me a few months of relief, but it’s far too soon to do more chemotherapy, and the doses I needed for improvement, are not something human beings are meant to do indefinitely. I tried not to cry, for as long as possible. My amazing rheumatologist has to be thrilled she’ll be on maternity leave during whatever we decide to do, because I’m sure the novelty of having not just a Behcet’s patient, but one with rare complications, has worn off by now. She did mention immunoglobulin therapy as a long shot option, which gave me the strength to ask about plasmapheresis. They use it in complex autoimmune disorders, and it has been used for Behcet’s patients before. She wasn’t sure whether or not it would work in my case, but decided she’d write to Dr. Yacizi at NYU to see if she could get him to weigh in.

Yes, I did cry, I was frustrated and I wanted to know immediately if she thought was a good idea. I have to remember that I am usually just like she is. I want evidence, facts that have the data to prove that something is scientifically valid. She’s not going to just say, “Yes, let’s remove all your plasma and replace it with donor plasma and/or a substitute,” because that is one hell of a rush onboard. 

I left the office feeling defeated. I’m already taking 2 grams of cell cept daily, and while I know I need to see a GI doctor, I don’t love going to see GI doctors. Maybe I could increase to 3 grams of cell cept per day, with GI’s help with the nausea and lack of mobility, but that is one hell of a maybe. Bright side is, I gained way to much weight during chemo and steroids, so I have some literal cushion when it comes to losing weight at my current rate. I’d rather gain muscle and lose fat, but sine I’m mostly fat at this point, I’ll just take whatever comes. I will need to hit the gym in the wheelchair to work on building up muscle strength, but that will come in time.

Waiting for my roommate to come get me, I get a notice that the raffles for the theater show Hamilton have closed for today, opening up the ones for tomorrow. I’ve been trying 3 times a day to win these damn tickets through this app, and failing each time. I’m feeling low, and I’m expecting to see the same “I’m Sorry” message pop up…but instead it says that I’ve won.

Excuse me?

I take a moment to call my “friend” and ask if he’s available to go up to LA tomorrow (they don’t give you much notice so you typically have to be in the city within 36 hours for the show). He immediately agrees which makes me tear up again, only this time I’m happy.

Will this be an easy thing on my body? No. 2.5-3 hours in a car, when motion really sets of my motion sickness, is a risk. The fact he wants to drive back the same night, is just even more of a risk. I’ve got the nausea meds, with the bonus benadryl just in case, at the ready. I’m getting as much sleep as I can tonight, and I’ve warned him that I may sleep on the way back. I’m hoping he takes his parents up on their offer to let us stay at their house that night, since the show doesn’t even begin until 8pm. Between doing my hair and makeup (a task if I’m shaky tomorrow), shaving, the car, dressing in less loose clothing, everything really, I’m going to crash hard on Thursday which, isn’t ideal because I’m supposed to have a job interview at 12:30…but I don’t even want the job to be honest.

Life is a balancing act for everyone, it’s just more apparent when you’re chronically ill. You have to figure out where your limits are, and push them just enough to find enjoyment without endangering yourself or others.

Crossing my fingers I can get the doctors to agree to plasmapheresis and that it’s the treatment I need to get things under control. 

Crying With Sadness and Joy

When People Mean Well…but are just MEAN

Over the years of being sick, I’ve dealt with a lot of welcome advice, and a whole lot of unwelcome advice. It started when I was a kid, long before I even thought, or my parents even though, about something chronic. To be fair my symptoms back then were even more vague than they were as an adult, minus the miserable oral ulcers. In my early 20’s,  though, I got married, and got sicker. It was a bad marriage, with a lot of stress, and situations that were hidden from the public.

One lie within the marriage was that I had fertility issues. I didn’t, but my ex did. We were young, and not ready for children anyhow, but when people questioned issues, I threw myself on the sword. To cover my ex’s ego, I said that I had fertility issues. At the time I was struggling with what doctors thought may be Lupus, but ultimately was just labeled an “unknown connective tissue disorder”. One woman very nonchalantly told me that my infertility was God’s way of saying I shouldn’t have children because I was sick. I sat there for a moment, wondering what she’d say if she knew the real situation, that my ex was the one with the fertility limiting issues, and the cause of those issues. (I should say as a disclaimer, while my ex did terrible things to me, and in our marriage, he has since gone on to have an absolutely adorable son. Given testing that was done, I was told that it would not be possible for us to have children without IVF. I was told that IUI wasn’t an option, and that with my health, IVF would be difficult.)

In any event, there was always more advice. Diets to follow, natural remedies to try, even healing crystals that would unblock whatever was blocked in my body. It was always something, and I was always polite. Until I had a diagnosis, it didn’t make sense for me to waive off the advice, even if it were things I would never consider. I am a scientific person, and without proof, I’m skeptical.

Then I got diagnosed, and the advice started to bug me. I also noticed that various fads would come into play. For example, I gave up gluten because my GI doctor recommended it. We couldn’t test me for Celiac’s Disease, because I couldn’t eat enough gluten to have it in my system for testing. I had eventually ended up eliminating gluten containing foods unintentionally, because I’d noticed certain foods made me sick, and others didn’t. There is actually evidence that folks with GI manifestations of Behcet’s, do benefit from eliminating gluten from their diets. The issue was that people started avoiding gluten for bogus reasons, and because I didn’t have Celiac, it was assumed that I was on the same bandwagon. I had to explain, repeatedly, that my autoimmune disease was benefited by elimination, and that for some reason my body couldn’t break down gluten.

The same thing happened with Aspartame. My current roommate still rolls his eyes when I refuse diet Coke, but will drink diet Pepsi. I have no clue why my body can’t handle it, but I can tell if I’ve gotten into it, and you’d be able to tell, too, if you knew me. Why? Well, I go from looking like me, to looking like a version of me that happens to also be seriously pregnant.

I’ve had friends chastise me, stating that I’m allergic to so many antibiotics, because I rely too much on “Big Pharma”. The truth is actually due, in part, to two separate things. The first is that the genetic mutation common in patients with Behcet’s, has also been linked to a condition called Steven’s Johnson Syndrome. Luckily I’m familiar enough with the situation, and it’s uncomfortable enough, that I discontinued antibiotics the first time I got it. A doubtful doctor prescribed a similar antibiotic, at which point SJS reared its ugly head, and I went to urgent care. I’ve been lucky to avoid hospitalization, but I do avoid any drugs I’ve had an SJS reaction to. The second issue is simple…my immune system is messed up. Whether or not I’m truly allergic to all of the antibiotics I’ve had reactions to, hasn’t been established, but it’s highly likely that I’m not. I am fairly confident I’m brutally allergic to Cipro, but the rest of the allergies I doubt. I’ve had seriously delayed reactions, I’ve had reactions in the ER when I haven’t been given anything. I’ll be seeing a new allergist soon, but I can’t do traditional testing because of pathergy issues.

Right now I’m dealing with a gnarly flare, including serious skin issues. I’m bracing myself for the advice. What to wash my face with, how hot the water should be, what to eat and not eat, various acne face washes…blah blah blah. The best part is…it isn’t acne. Please do not approach me and tell me I look good, but…just don’t. I don’t want to hear about your aunt’s friend’s daughter’s line of eco-friendly organic face cleansers. As much as you’re informing me from a place of love, your words hurt.

Unless someone is coming to you because they know on at least some level, what you’re dealing with, and you can tell they need advice, keep it to yourself. Unless you can say, “I hate dealing with that! I’ve always had to…” and leave it at what YOU’VE personally done, because you know someone is dealing with a specific illness…keep it to yourself.

I grew up with clear skin. One pimple was grounds for shock. When I started having skin problems, I thought it was acne. I was annoyed, that at 25, my skin was rebelling against me. I didn’t realize that what was going on with my face, could in any way be related to my Behcet’s. All my symptoms had been internal, aside from the joint swelling and long naps. Now I was covered on my face, with these lasting horrid pimple-like things. I also had raw red skin, from slathering myself with the various washes and creams I had self-prescribed, or obtained via well-meaning advice-givers.

You may mean well, but when you jump to conclusions about how someone looks, or what they’re doing, you may end up making them feel worse. Yeah, I may have an odd way of handling some of my day to day tasks, but that’s usually because doing it the “normal” way, is going to get myself, or bystanders, injured. My weird bumpy skin may prompt you to help, but at the end of the day, there isn’t really anything that can be done. It hurts. It’s frustrating. It just is.

When People Mean Well…but are just MEAN