So Much Sleep

Every single doctor wants to put me on a steroid taper. I was just on a steroid taper. The issue is that the dose of steroids I need to feel relief, is a whole lot higher than what one can maintain long term. The other issue is that it’s just a stop gap measure. We can keep decreasing flare symptoms for a few days at a time, but we aren’t really doing anything for me overall.

Tomorrow I’ll be calling my rheumatologist, but she’s pretty set on me waiting until January to move forward with IVIG. One of the biggest struggles lately has been how much I’m sleeping! Literally fell asleep in the bathroom because I thought I was going to throw up, didn’t, and ended up waking up on the floor. (Now that I’m thinking about it, my jaw hurts, so it is possible I fainted.) Still, I literally slept for at least 12 hours last night. I got up, made it to the couch, and somehow fell asleep again for a couple of hours. Walked my friend’s foster dog, hung out with the friend for a bit, then somehow managed to fall asleep again. Not sure for how long, at least an hour, maybe longer, but my friend woke me up and asked if I was okay.

My memory has been horrid, and I want to watch shows, but I keep falling asleep. At this point I just put things on that I’ve seen before.

One amusing result was me spending several hours convinced my phone was broken. I kept lowering the volume, and was convinced it would stop just before going to mute. I reset my phone. I updated everything. Then I remembered, to put it on mute, I had to use the little toggle button on the side.

I mute my phone regularly…but today, I forgot how to mute my phone. 

While a lot of people would find this alarming, I just a accept it for what it is. I am in a flare, and all my symptoms are heightened because of it. New symptoms are related to old symptoms, and even fully new symptoms seem to be minor compared to established symptoms.

If you have a chronic illness, and you need more sleep than usual, talk to your doctor, and then sleep! 

For a long time I had a lot of shame about how much sleep I needed just to barely function, but now I (for the most part) accept it. Yes, there are days when it aggravates me, but right now I’m just embracing it. Normally my nebulizer would make me jittery, but it didn’t, so that makes me happy! I also don’t explain it to people, at least not in an apologetic way. My automatic response to, “Are you okay,” has become to just say that I am, or even ask why they’re asking. I don’t even think twice because I’ve just accepted how things are…for now.

I will not give up hope. I will have a better quality of life. Maybe I’ll never be in remission, but I will achieve things in this life.

You have a purpose, even if you’re ill…you just have to find it. I’m still digging around for mine, but I will find it. Right now I’m just trying to share my story, and make people who struggle with their illnesses, hopeful.

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.

 

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.

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. 

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.

Neurological Symptoms Getting Worse

Things haven’t been good, and between the livedo reticularis getting seriously bad, and my neurological symptoms flaring horribly, I know that my Behcet’s is winning. I’ve been on a steroid taper, but there just doesn’t seem to be much relief. I went to neurology today, and we’re increasing my seizure medication and my neuropathy medication, but he really doesn’t have a ton of faith that it will help my symptoms, including my shakes and ataxia. It could help other issues, but there really isn’t one drug to help my specific set of neurological symptoms.

We don’t know what is happening in my brain/spine/nerves to cause my shaking, ataxia, and hyperactive reflexes. I present a lot like an MS patient, but I don’t have MS. Also, because the symptoms get worse with flares, and do improve slightly during high immune suppressing treatments, it makes logical sense that it’s related to my Behcet’s. With my GI system crashing though, there is a question of how to adequately treat most of my symptoms…while also having to embrace the reality that I’m sadly unique in how my neurological symptoms present.

Today the doctor mentioned IVIG, but we aren’t there yet. I’ll bring it up with my rheumatologist next week, just to see if that combined with other therapy options is an idea. I’ve also read some things about plasmapheresis, though again, it would be experimental because Behcet’s is so rare. If I had to do more chemotherapy to live independently, then obviously I would, but I’m desperate to try other options first. Some of the things I want may seem odd to someone who isn’t chronically ill, but for me they’re everything.

First and foremost, I want a port. I know there are a lot of risks, and the risks do scare me, but because I’m so hard to stick, if we were to take on another IV treatment, I would want to have an easy access situation. The other benefit of a port, is we could talk about hooking me up to IV fluids, and even IV medications. With my poor GI motility, it just makes sense for me to bypass my stomach for a lot of things. My seizure meds, and my immune suppressing drugs, as well as my nausea medications, are the first things I think of. Also, I have to choose between eating or drinking, which sucks. It is so painful to do either, that I’ve been giving up on food so I can drink enough fluids. Doctors are still saying I’m dehydrated though! This has gone on for years, with doctors always insisting I need to drink more water, but my body just can’t handle more water orally. IV fluids at home would really benefit me, even if we just did them every other day.

The second thing is the wheelchair, and while I’m disappointed at needing one, I appreciate that it will be a tool for me to use to become more independent. At this point, they have approved me, so I’m just waiting for the company to get in touch, and to work on what kind I’ll be getting and when it’ll be arriving. I’m still really embarrassed to need one, but I’ve fallen several times in the last few weeks, and with my diet so limited, the weakness is even more pronounced. We know from the way my body has declined in the past, that my neurological symptoms are only going to get worse. It doesn’t make sense for me to put pride over my well being. If I wait until I’m fully unable to walk, then ask for a wheelchair, I’m going to be stuck waiting for however long it takes.

The third thing is nutritional supplementation. I refuse to get an NJ or an NG tube placed.  I would likely need an NJ as my stomach is the issue, and they’d want to bypass my stomach. My gag reflex is just too strong, and living with a tube from my nose into my intestines would not be something I could handle. I also don’t feel like I’m sick enough to warrant a surgical feeding tube, and wouldn’t want one anyhow. I can still intake things orally, and I feel like if we got the right supplements I could get by. I’ve been choking down Boost, and I can tolerate potatoes, PBJ (sometimes), and sorbet. My issue is I’m not getting enough protein, or other nutrients, on my limited diet. Today I had a cup of sorbet, and that was it until 6 when I forced myself to eat some potatoes. If you’re wondering, it hurts, and I’m miserable, but at least I kept it down thus far.

I need a support network. I need people who get what I’m going through, and don’t judge me for being negative. I had a friend who was really close to me, who had multiple medical conditions as well, so I’ve been venting to her about my health lately. She is also someone I go to when it comes to how to date with chronic illnesses, and how to talk about health issues with someone you care about. Unfortunately we’re not friends anymore. She felt as though I was becoming wrapped up in my illness and letting it define me, and that my casual dating situation with the guy I’ve been seeing was unhealthy for me. Yes, I want to find someone to seriously date, but at this point I don’t have the energy to put into dating. (Not to mention I can’t eat much, and alcohol is a big fat no at this stage.) Yes, I have other positive things going on in my life, but everything has changed course because of my illness.

If you’re reading this, and you have a chronic illness, don’t feel bad about feeling bad! When you find yourself in a rut because your disease has taken over, it’s okay to process it for as long as it takes. In my case, I began losing more and more things that I’d discovered about myself in the last two years. After my marriage ended, and I was free from an abusive situation, I really started to find who I was as a person. Then, my disease progressed, and I began to lose things I’d started to enjoy. That process is ongoing, which means my frustration and sadness is ongoing. I don’t dwell on it publicly but I do vent to friends because I need help finding me. Yes, finding yourself is a personal process, but I think being sick it’s important to have people in your corner to help you. If I didn’t talk about my health, I can honestly say I would get lost in suicidal thoughts.

Really? Yes, really. There have been points in this journey where I’ve just wanted to die, and I think it’s something anyone with a chronic illness deals with. Whether or not you’re truly suicidal, or just feeling overwhelmed and the thoughts crosses your mind, it’s a real issue that requires real help. I am on anti-depressants, and I’m setting up more counseling sessions. I don’t want to actually die, so I need to make sure my mental health is being handled by professionals.

Please seek professional help or go to your nearest emergency room if you are feeling suicidal. Various countries and states have numbers you can call if you need someone to talk to. Call 1-800-273-8255 in the U.S. for the National Suicide Hotline. You can also chat anonymously. 

So that’s an update on my situation. My brain is starting to become worthless, so I’m off for now. Please address issues you have with your illness, and know you aren’t alone if you’re depressed or anxious. We can get through it, you can get through it. Your life (my life) OUR LIVES, are worth fighting for.

Also the only thing that’s working on my nausea is medical marijuana. That makes the part-time job hunt harder because I can’t take anything that they drug test for. At the end of the day, I can’t work if I’m up all night dry heaving, so it’s worth it for me to forgo those positions in lieu of the medical treatment that actually works for me.

Self Advocacy and Research

There is a fine line between becoming a Google doctor, and self advocacy along with research. When it comes to having something like Behcet’s, the treatment options are really all borderline experimental. We can treat the symptoms, get into the more extreme treatments, and then when those don’t work, what happens? Well, you end up like me…tripling your immune suppressing drugs, going on a six week steroid taper, and sleeping more than a sloth in a coma.

When I was having severe neurological symptoms, there was discussion amongst myself and a well educated friend, about things like plasmapheresis and IVIG. The former seemed the most promising, with the latter seeming like an option should they find out my immune system was also somewhat deficient. Plasmapheresis was an interesting find for me, because it has been cited as putting many patients with many different autoimmune disorders, into remission, or at least into periods of remission. I know I’ll never be off of immune suppressing medications…but the idea that I could be free of steroid tapers, and symptoms, is kind of everything to me. I mean, I can’t imagine what it would be like to make plans, ahead of time, and not have to worry about fainting, seizing, and of course, how to eat properly so I don’t pass out but also don’t vomit.

So how do I take what I’ve learned online, and apply it to real life? I don’t know. I’m not that patient who suggests things to their doctors, but I also have come to realize that my doctor is open to my ideas at this point. We didn’t think chemotherapy would fail. To be honest, we’re not totally sure why it failed in such an extraordinary fashion, though my suspicion is that I got a nasty cold, right around the time I began to be exposed to some really nasty stuff in my apartment. My immune system was triggered, I had to lower and even stop the Cell Cept, and that is the perfect storm for relapse. Initially we thought it was minor…but now I’m thinking it was just the beginning of this larger relapse.

Dizzy. Nauseas. Exhausted. In pain.

That is how I spend my days. One weekend rallying to spend time with friends, even though we didn’t do anything insane, turned into me laying in the grass because my legs literally stopped working. The steroids have at least encouraged my appetite, though they haven’t done anything to really help me digest things appropriately. At least the GI bleeding has taken a hiatus.

I want to tell my doctors that we need to try more, that I’m not ready to give up and just accept my life is how it is. I also don’t want to suggest something, only to have them scoff, become annoyed, or worse, try it and have it fail. Where is the line? What is helpful versus ridiculous? I honestly don’t know, but the struggle is becoming insane. One vaccine has left my body struggling to function. My diet cannot sustain what I need to function properly, either. The pain, the exhaustion, it’s all just so overwhelming.

When Chronic Illness Pauses Your Life

I found out yesterday that we lost a family member to suicide. My instinct was to get on a plane, fly back home, and be there for his wife and children. Then I had to take a moment to realize that it wouldn’t be possible for me to do that. Financially I can’t afford the airfare, because I haven’t been working…because I’ve been sick. On Thursday I received the Hepatitis A vaccine, and unfortunately I landed in the group of people who react badly to the vaccine. I’ve had a fever, extreme fatigue, and a host of other symptoms. On top of that I’m going through a very annoying steroid taper while increasing my Cell Cept. Then, of course, there is the simple fact that it isn’t safe for me to fly at this stage in my relapse.

When your health puts your life on pause, you learn to just accept it. Sure, you have moments where you’re frustrated, but in the scheme of things you just sort of have to deal with it. In this instance, I can’t make sense of how to make sense of it. There are members of my family that want to see me, and even need me, and I know there is no logical way for me to get to them. I live where I live because there are more medical facilities, and the weather is better for my health…but in these moments I definitely struggle.

It also put a lot of things into perspective regarding my own mental health. I’ve been embarrassed about my struggle with depression…but I still talk with friends about it because I know that I need to bounce it off of certain people. They’ve been instrumental in my seeking increases in depression medication, and pushing for anxiety medication. Still, it isn’t something in my family that is really openly discussed. I know family members who take medication, including myself, but it’s not something that we really are open with. I have friends who take medication as well, but there is still this stigma around it. There is also the idea that you take meds, and you’re better. That is completely not the case for a lot of us. I need to take seizure drugs, my seizure drugs aggravate my already existing depression and anxiety. In fact, they drove my manageable depression into severe depressive disorder.

The person who passed in my family, I didn’t even know he struggled with depression. His wife knew, but again, it wasn’t really openly discussed. For him to go off and end his life was not expected, certainly not the way nor the time that it ended up happening. His daughters are definitely shell shocked, as are the rest of us. Mostly we’re worried for them. To lose a parent to suicide is something I can’t even fathom. Losing a parent is hard enough, but knowing that your father simply couldn’t go on with life, is heartbreaking. I just keep hoping that they know there isn’t anything they could have done to keep him here, and that his ending his own life doesn’t mean he didn’t love them enough to stay. His pain was simply so overwhelming, that he couldn’t see the people who loved him through that painful darkness that enveloped him.

This post isn’t about me taking his death and making it about my health problems. I just think it’s an important topic because of course I would love to just hop a plane and be there with my family. We see how chronic illness impacts things like work and school, but how often do we confront how it impacts our family life? I’ve talked about how I don’t feel like I’ll ever be truly loved in a relationship because of my health issues, and that is still something I struggle with. Coming to grips with my limitations within my own family is even harder. It’s one thing when I am let down by my health, it’s another when I let down others. If I had my wheelchair, I would chance flying, despite the doctor’s warnings…but I don’t. With the other medical issues I’ve been juggling, I know it isn’t realistic to try and go…but it doesn’t make it easier.

Hug the ones you love. Open your arms to those with physical and mental struggles. Talk about mental health issues because they’re not something to be ashamed of.

Relapse Struggle

I’ve begun this blog so many times, but the wording always seems wrong. Either I’m far too upbeat, or I’m far too pessimistic. This is my attempt to just be honest.

About a month ago I began struggling with increasing fatigue. The weather here has been more hot and humid than usual, so I told myself it was just my neurological issues acting up. I’d also had a rather nasty seizure due to a delay with filling one of my seizure medications, and my rather stupid decision to go for a long walk without drinking enough water. One of the issues I struggle with when my stomach acts up, is that I really don’t feel hungry or thirsty, until quite late in the day. The seizure led to a nasty infection in my hand, because I’d managed to give myself road rash from thrashing around on the really disgusting sidewalks downtown.

Now, at first I chalked up feeling like crap, to the antibiotics I had to take for that infection. Since I’m immune compromised, they’d done a massive IV infusion, then really major oral antibiotics afterwards. I think I was in denial, but I kept thinking about the cold I’d had, and telling myself, “You had a nasty summer cold, the weather has been hot and humid, you were on antibiotics,” etc. I basically just kept coming up with options other than a relapse. Then the bleeding started.

My GI bleeding isn’t exemplary in terms of amount, but it is exemplary in both persistence, and the obviousness of it being from my actual intestines and not my rectum. I did have rectal ulcers, and one oh-so-lovely genital ulcer, but none of that was bleeding. I could feel the stabbing pain in my colon, as well as various points in my intestines, and the color wasn’t bright enough to have been strictly caused by the rectal ulcers. Try as I might, there was no denying I was at the very least, having a GI flare up.

Things only went downhill from there. My appetite became so poor, along with my thirst, that I began purchasing Gatorade and Boost. Then the shaking began. I’d been dealing with morning shakiness for a while, but the amount of time I spent violently shaking became longer and longer. I would get up at 9 or 10 in the morning, and shake until 1 or 2 in the afternoon. My service dog in-training was a bit annoyed that I needed him wearing his harness at all times, because I couldn’t trust my footing in the house. Soon I was using my walker again. I fell into the dishwasher, pulling it loose from the wall, and even fell a few times while outside.

I was lucky enough to finally get my primary care doctor to inject me with steroids, but I haven’t tolerated the oral steroids, meaning I’ll likely go in next week for more injections.  I’ve begged my doctors to allow me to self-adminster IM injections at home, but they’re all insistent on going the oral route, or going into the office for the injections. My primary care doctor, and neurologist, have both decided that a lightweight wheelchair is a good decision. I won’t use it all the time, but on days when I’m feeling weak, it’ll lessen my fall risk. I also hope that it will enable me to return to work, as disability was denied again. Now they’re saying I have to weight 18-24 months for a court hearing, even though the state failed to process my neurological issues, which is one of the biggest reasons I can’t work reliably, along with the GI issues, of course.

It’s hard to know what to feel. I have this overwhelming urge to stay positive, but I’m pissed off. I had my last round of chemotherapy in April. I relapsed 4 months later, with my severe symptoms cropping up around 5 months after completion. I spent more time going through chemo, than I did in remission. While I’m beyond grateful that my neurological issues are stable, I’ve had to face that I will never be neurological “normal.” After breaking down in my neurologist’s office, he suggested that I was emotionally unstable. I wanted to smack him. Of course I’m emotionally unstable, my body continues to let me down, even when I do everything in my power to try and give it a fighting chance.

So that’s where I am as of right now. Financially struggling, emotionally struggling, but still determined to find a way to live my life. At least once my wheelchair comes, I can begin to make plans without worrying that I’ll be too weak to participate. I have a backup option for mobility. I’ll also (hopefully) stop falling like a drunkard while walking around downtown on hotter days. I still worry about things, like finding love, and settling into a family someday, but I just have to hope that it all works out. First and foremost I need to find a way to persevere, even if my body seems determined to drag me down.

Then There Was Cancer (Maybe)

In December I had an abnormal PAP smear. I didn’t stress. There had been talk of HPV a six months prior, and while my doctor at the time of the HPV drama had been a bit of a pain, he had stated that the type I appeared to have was very low risk. It didn’t cause cancer, and it wasn’t something most people even had symptoms of. I had an impaired immune system, so I had symptoms, but eventually I’d clear the infection, and be totally fine. At least that’s what he said. I opted to see an OBGYN before starting Lupron during chemotherapy, and that’s when I’d had the abnormal PAP.

Initially I worried. They wanted me to come in for a colposcopy, but I couldn’t drive, and was seriously ill from the chemo. My new doctor assured me that I could wait for the colposcopy. It took a long time for cells to change, and the external lesion that I’d noted didn’t even appear to be HPV. She told me it was likely a skin tag, or a result of my Behcet’s. I went through my chemotherapy without really thinking much about the abnormal PAP smear. What where the actual chances that I’d have all of these things going wrong at once?

On Friday I went in and had my colposcopy. I was nervous about the pain, but otherwise okay. What were the chances? They had a screen where you could watch the procedure, and so I watched…until I realized that something was wrong. Very wrong.

I stared at the screen. I wasn’t exactly sure what a cervix should look like, but I knew that there was something seriously wrong with mine. The edge was bleeding, which the doctor said wasn’t totally uncommon, but the rest of it looked foreign to me. A large white mass covered the majority of the surface, breaking the line of skin cells that mapped out the edges of the cervical surface. The doctor informed me that they’d need to do a biopsy. She turned off the screen saying that it wasn’t fun to watch yourself be cut.

A medical student held my hand, and the biopsy was quickly taken. It didn’t hurt as badly as I thought it would, but my head was swimming. The doctor told me to be prepared for the call, that the changes were moderate to severe, and more towards severe. We talked about HPV and cervical changes, and I asked if I had any options. She said that did, but that we needed to talk once the biopsy results were in.

I haven’t gotten them yet, but I’ve talked to friends who were in similar situations. Cervical cancer is this odd taboo subject. There are odd staging levels. Even if you’re in the very early stages, it’s still cancer, but it’s approached as though it isn’t. They’ll just shave off some of your cervix, or cut out some of your cervix. My friend has miscarried, once in her second trimester, due to issues with her cervix from the procedures she had to undergo. Other women have the “cancer in situ” treated via these removals, but still end up having to go through hysterectomies, because it returns.

I’ve fought through six months of chemo. I’ve accepted limitations based on odd occurrences with my autonomic nervous system. I’ve told myself that I will still find love and start a family someday, even though I’m embroiled in a long and bitter divorce. I push and push, and then the unimaginable comes form left field. Nobody was sure if I had HPV or not. They were all fairly sure I didn’t, or if I did, that it wasn’t a strain that caused cancer. Now? Well, barring a miracle that shows it’s some odd lesion related to Behcet’s, I’m facing cervical cancer. Now I have to grasp at the hope that it’s early in the cancer game, and limited to an area that can be treated without impacting my fertility.

Of course the doctor told me point blank that I am, and always will be, a high risk case. I have to see a high risk OBGYN before becoming pregnant, plan carefully, and be followed closely. People think my depression or anger over my divorce is somehow related to jealousy, jealousy that he’s living with his girlfriend, and that they have a baby. I am jealous, but not just of him. It’s this overwhelming jealous anger at the universe, because people around me have solid careers, homes, families, etc. They’ve happily fallen into the life I’ve always imagined, while I struggle to just hang on to the bits and pieces of what I’ve managed to assemble for myself.

I want to be loved, and be in love. I want to have a family. I want to have a career that enjoy. I know that life isn’t that simple, and that nothing is as perfect as it seems, but when you’ve fought as hard as I’ve fought, just to have life kick you when you’re just starting to get up…it’s hard. I feel like the wind has been knocked out of me. I’m waiting for the call, and dreading it, all at the same time. Bills have mounted, and yet I can’t even try to find some work from home work, because if I even work just a little bit, on record, my disability could be denied. I have backpay that I’m owed, that I need, because my credit card debt is brutal.

There has to be something more than this. There has to be something better. I’m so sick of finding out that the light at the end of the tunnel is really just an oncoming train.