Hello Remission!

On Monday, April 17th, I had my sixth and final round of Cytoxan. It almost didn’t happen.

When I went in, they did the standard laboratory work, and I was a little worried that my counts would be off. I’d been feeling rundown prior to the infusion, which wasn’t usually the case. Sure enough, the nurses returned and informed me that my potassium levels were low. This was a big concern for me because during one round of chemo, I’d had low potassium and calcium levels, which led to a massive seizure, and a night in the hospital. It should be noted that I despise bananas. My doctor cleared me for the infusion, but ordered two potassium pills to be taken prior to the infusion. She was coming in anyhow that day to discuss plans for future treatment.

So, potassium down the hatch, and then I did something idiotic…I ate during my infusion.

I don’t get nauseas during the infusion, or after, because of the glorious medications I receive. I do, however, develop an aversion to whatever I’m eating during the infusion (or drinking). This has caused me disgust at peppermint after the first round, and a lingering desire to only eat sweets after eating chips during that first round, too. Long story short…I’ve developed a sweet tooth. I stupidly ate Sour Patch Kids, which I have grown to love despite previously hating them…and my “friend” had recently purchased Swedish Fish scented vape juice just a day before. I thought it smelled wonderful.

Now? Nope.

This past week I felt like death rolled over and wrapped in horse manure. I’m staying with my “friend,” and I don’t really remember much from the first few days. I knew my potassium was still low because of the muscle twitching and pain, but I was too queasy to give a shit. I stuffed my face with potatoes even though I really didn’t want them, and then gagged whenever my “friend” would use his vape. Even now, with the nausea nearly gone, the scent of that Swedish Fish vape oil, is just too much.

Remission? My doctor seems to think so, though I guess it’s important to note that I will always have Behcet’s. I have this urge to go out, find a job, do everything a healthy person would do, but I just can’t. I’ve even pushed myself too fast already, with walks, and the dog park, and payed via sheer exhaustion, and dizzy spells. I will be taking Cell Cept, which is still a pretty strong immune suppressing drug. I’d thought remission would mean no more drugs, but apparently that isn’t quite how this thing works. I think a part of knew there would be maintenance medications, but you always want to hope that you can be “normal,” whatever that is…

My neurological issues are a whole different situation. I still have and seizures, issues with heat, muscle weakness, and tremors. My heart rate and blood pressure make no sense what so ever…which is why my neurologist is confident about his diagnosis of autonomic neuropathy. It was a blow to be told I had a form of dysautonomia, especially since diagnosis of autonomic neuropathy is based a lot on symptoms, instead of laboratory analysis.

When you’ve spent your entire adult life, and much of your childhood, searching for answers, you expect the answers to have some tangible legitimacy to them.

Of course, my heart rate fluctuations alone have given doctors pause for quite some time. In the hospital they thought the machinery was malfunctioning, because my heart rate would drop into the mid-thirties while I was asleep, and them soar to 160 when I sat up. Welcome to dysautonomia, can I take your order? 

The reality is that many Behcet’s patients suffer from some form of dysautonomia, though from what I’ve read there doesn’t appear to be a clear reason for why this happens. There aren’t a ton of us Behcet’s patients, which makes it hard to study comorbidity scenarios…but still.

Where does this leave me? I will likely have to take seizure control medications my entire life. This means I will also require antidepressants, since I have issues with depression because of the high dose anticonvulsants. If I can keep my Behcet’s in remission, I can hopefully wean off of the nausea medications, and have more of an ability to tolerate medications by mouth. I’ve already put on 40 pounds, and would love to drop some of that weight. It is hard to see my body change so drastically, but I’m grateful that I am capable of digestion again. That being said, I will also still deal with motility issues because of the dysautonomia, and because of my limited diet and hunger during my serious Behcet’s issues. I haven’t had any issues with my balance and coordination, though I do still have hyperactive reflexes. This, I’ve been told, is related to the autonomic neuropathy, which I’ll be investigating with my neurologist over the next several months. I’m also a new and proud supporter of medical marijuana. It has saved me more times than I can count in the last few months, and particularly during this last round of chemo. Without it, I’m not sure I’d have lasted the full six months.

My divorce still isn’t finalized, because my ex is controlling. It bothers me that we’re still legally married, and that I have my married name. It doesn’t bother me that he’s trying to keep control by dragging out the divorce. I am happy, and focused on my life, and he’s not able to hurt me any longer.

His words still echo in my mind though, that nobody will ever love a sick girl like me. What if that’s true? What if I’m destined to be alone like my father? Sure, he has friends, and I’m sure he dates, but he won’t open up to anyone, largely because of his illness. He’s told me that he’s better off alone, since he’s sick, and that could be a burden. I don’t think he realized I was listening when he said it to me, and he definitely didn’t know that I would one day develop my own serious health issues.

I’m in this odd place. I know what I want in terms of a career and a family, but I don’t know how to get there. How can I have children with my health the way it is? Who would want to have children with me? Will anyone love me enough to see past my health issues? What if my dream career isn’t fully possible with my health limitations?

You know you can adapt so much of the world to fit your abilities, but you also hesitate to ask for help with adaptation, because you want to be seen as equal to those around you. I want to be loved for who I am. I want to be seen as a human being first and foremost. I know that my disabilities are a part of who I am, but I don’t want that to be the first thing others notice about me.

There are times when I know I would need a wheelchair to do certain things I’d love to do. Take walking around Comic Con festivities. I know that the heat will break me down. I know that I would be spent by the time I walked from my apartment to the waterfront. If I had a wheelchair, I could take the stress out of the mix, assuming I had the strength to propel myself in the chair (or if I had a power chair). Still, who is going to look at me, in a wheelchair, and think, “That right there is girlfriend material!”

Sometimes I let myself wonder if my “friend” could be more, but then I take a step back, and evaluate the situation. He’s an amazing guy, with drive, and ambition. He’s attractive, kind, and comes from a good family. There is probably a reason I’ve been thoroughly friend-zoned, and it’s more than him not knowing what he wants. We all question where we’re going in life. but if we see someone who feels like they fit into the equation, we know. I don’t fit, and it’s taken me a while to accept that. So while this is fun, and a big part of me wants it to go somewhere, I’ve accepted the reality that it won’t. Guys like him don’t settle for girls like me, and no, that isn’t depression or anxiety talking. Like I said, I’ve made my peace with it.

I do want to be loved though. As much as love terrifies me, I want it. So I guess I’ll just keep fighting my illnesses, and celebrating the victories. As soon as I move into my new apartment, I’m having a post-chemo celebration. I want to have a major victory dance over the end of this chapter of my life. Eventually I’m going to head to Vegas to see one of my favorite DJ groups perform.

I’m going to live life.

Hello Remission!

Cytoxan: Round 2

Chemo brain is a real thing. 

I had my second round of Cytoxan on Monday, December 18th. After the last round a few things happened that changed the treatment plan slightly. First off, I was having pretty significant symptoms. My doctor ordered blood work for two weeks after the first treatment, and discovered that my counts were lower than necessary for treatment, and in reality, just too low in general. Instead of increasing the dose for round 2, she decreased it. She also was able to convince my insurance to cover Lupron, a drug that may increase my chances of remaining fertile post-treatment. I’m honestly shocked my insurance was willing to cover it, but insanely grateful. There are no guarantees either way in terms of fertility and Cytoxan. If you look at the dosage and odds, statistically sterility is common, but you never know if it’ll be something you have to go through or not. I didn’t want to take that chance. As long as the hormones in the Lupron weren’t going to make the chemotherapy less effective, I was willing to do the shots once per month.

People have told me that wanting children of my own someday is selfish. What if the child is sick like me? With all the autoimmune disorders in my family, how could I possibly want to have a child who could be ill? If I want to be a parent badly, I should adopt. Don’t I worry my body can’t handle pregnancy?

To all of those people: I’ve thought about all of those things! It terrifies me that I could give life to a child who has to suffer through the things my family members and I have suffered through, but there is no guarantee that my child or children, will be sick, too. As for the suggestion I should adopt, I’d love to, but it’s expensive. My health issues preclude me from being a good candidate. I am terrified my body can’t support a pregnancy, but that’s why I’ve taken a billion and one precautions to prevent it from happening. If and when the time comes for me to start a family, it’ll be extremely coordinated. There are no surprises happening here, because I’m responsible enough to recognize the risks. (I also don’t want kids this moment. I want to get healthy, and kick around some things on my bucket list dammit!)

So, back to round one…the low blood counts were accompanied by epic bruising, and hair loss. It came out oddly, as if it were shedding evenly, but then again, a few spots were shedding worse than others. If I had an itch, and scathe it, I’d end up bursting the capillaries beneath that area of skin. I was tired, nauseas, and none of the food I wanted tasted right. My mouth peeled and bled. I was in enormous pain. It sucked.

Round 2 has, thus far, been similar, but more mild. The fatigue is definitely worse than the last time, but the others symptoms have come predictably in order, without being as severe as they were during round 1. The abdominal issues are constant, and they suck, but I’m just sort of cramming calories in when I can, and letting my body do the talking. The mistake I made during the first round, was thinking I could coerce my body into doing what my mind wanted to do. A trip to the ER made it clear I couldn’t push myself.

This isn’t how Cytoxan is for everyone! 

My dad went through Cytoxan therapy, and didn’t miss a day of work. Never threw up, never had side effects that side lined him the way I have. Some people end up in the hospital. That’s just how chemotherapy is. Everyone is going to have a different level of reaction. The amount I received, for my weight, should have been manageable. For whatever reason, my body couldn’t handle it, and things started to go haywire. It sucked, but at least we’ve founds something that can go after my immune system.

I live in California, where marijuana is now just flat out legal…though you need a medical card to buy it. Instead of trying to fight through the nausea with Zofran and Promethazine,  I decided to really give pot a chance this time around. I have never been so grateful for a plant in my entire life. While the prescriptions work, they take longer to get into my system, and they aren’t as effective as the marijuana is. It’s just a flat out fact. I need to find the right strain, because right now a lot of them make me sleepy, but the facts still stand.

Today I decided I could easily live in a studio apartment, even with both dogs. Having spent way too much time confined to my bedroom, it dawned on me that having a space slightly bigger than this, with a divider for the living area, would be ideal. Smaller living space = less distance to travel for medications, food, water, etc. I don’t know what is going to happen when the lease is up in a couple of months, but I’m keeping my eyes open. Moving 5 months into chemotherapy would most definitely suck…but my roommate doesn’t seem to be in love with having me as a roommate, and I can’t blame him.

I am not a bad roommate, I’m just a spoonie who is learning to listen to her body and respect its limitations. He’s not a bad roommate, but he’s very outgoing and extroverted, with an aversion to blood and illness in general. I thought we would mesh on a science level, and maybe we could have, but it didn’t work out. We’re basically two people who aren’t friends, but live in the same place. It would have been nice to have built a friendship, but we just didn’t.

Round #2…ugh. At least I slept through most of it. After a ton of drama courtesy of my ex, there was very little sleep the night before. I ended up getting some Ativan for nerves, and that combined with the other meds knocked me right out. It was absolutely glorious. I needed the sleep, and more importantly, I wasn’t hyperaware of the changes in my body. (I tend to get flustered when my heart rate fluctuates, or nausea creeps in, instead of just accepting it. I don’t mean to get flustered, it’s just an uncontrollable response.)

Today is Friday, and my mouth hurts. A lot. It’s dry and peeling, no matter how much I drink. I know it’s the skin turning over, but knowing why it’s happening don’t make it suck any less. It’s kind of a cruel chemo trick…the second your nausea starts to fade, and your hunger creeps in, your mouth will be too sore and gross for anything solid!

Cytoxan: Round 2

Cytoxan: Round One

It’s Thanksgiving, which was never a favorite holiday of mine. As a kid we had church donated food, and it was good, but it was also a reminder of what we didn’t have. Then there was my issues with eating due to anxiety, and then by my teen years I was having Behcet’s symptoms, but of course, it wasn’t acknowledged until my twenties. In any event, I have always looked for ways to duck out on this particular holiday. When I worked retail, I’d volunteer for dinner shifts, same for when I worked in a hotel. The last two years, however, haven’t exactly worked out simply. Last year I had knee surgery two days before Thanksgiving. This year I had my first round of chemo on the Monday before.

I went in optimistic. My thought process was that I’d feel sick Monday night, Tuesday, and maybe some of Wednesday, but by Thursday I’d just be tired and a little hungry. That hasn’t been the case. During the infusion I started to feel nauseated and honestly thought I was going to both pass out and throw up. I had the guy grab a nurse, mostly so he wouldn’t see me toss my cookies if it happened, but they stopped the medicine, gave me more fluids, then continued, and it was fine. I just felt very tired. (I had received Ativan due to muscle spasms in the beginning. They claimed it was anxiety, but I’ve had them for years.)

Each day has been worse, and it’s because I’m not drinking enough water. It’s hard to drink water when even the smallest amount of food or liquid trigger your urge to throw up. I’m not capable of ignoring that signal from my body. Some people can power through, and be like I’m nauseas, but I’m going to sip on this or that…not me. My mind is firm. If I’m nauseated, nothing shall pass.

I had Zofran with the infusion, then my usual at home dosages of Zofran, but it wasn’t enough. I used some promethazine to switch it up, and had some relief, but mostly I just slept. The problem with that is, while I need rest, I’m not getting fluids if I’m asleep. I finally asked a friend to bring me a strain of marijuana that was good for nausea. I wanted something with low THC, because I didn’t want to feel high, but enough that I wouldn’t feel like my stomach was going to kill me.

It worked.

I went from stuck in bed, to being able to slowly walk my new dog around the block. I didn’t feel 100%, but I felt so much better than I had. Today I used it again, and I may just have to smoke regularly to get through the next few days. I hate doing it, because it makes my mouth and throat dry, but I have lemon lozenges for that. I just wish regular meds worked for me. Then again, why are we so against marijuana when it clearly works wonderfully on illnesses like mine? Why am I denying myself medication that could make me functional. Make me able to get out of this damn bed and do something? I used it for what today? Water and putting the dishes away. Seriously.

My mother is in denial. She believes what her friends have told her. How I shouldn’t feel nearly as sick as cancer patients, and how the side effects for me are lower because the dose is lower. She’s wrong. The dose is the same, the frequency is different. I will feel shitty because I am nuking my body! It’s frustrating because we don’t really have a relationship beyond pretending, and now she’s attempting to become involved when there really isn’t room for her nonsense.

Side Effects

  • Nausea
  • Fatigue
  • Dizziness
  • Headache
  • Body ache
  • Sore throat
  • Abdominal pain
  • Yeast infection?
  • Bleeding? <—

So there is a really bad side effect that can cause severe bleeding from your bladder. It’s bad. I don’t have that, but I am spotting which is odd. I do have a history of getting my period when I’m not eating enough, which I’m not courtesy of the nausea, so I’m guessing the existing yeast infection has melded with the spotting to produce what looks like a bizarre period or some sort of weird bleeding situation.

In any event, I’ll take bleeding if it’s period related, because that means that I’m still technically fertile. Of course it’s old blood, so maybe it means nothing. Maybe its’ my ovaries bidding a final farewell to a world they didn’t get to know. Maybe I’m just melodramatic because my life is in a major upheaval and I want things to even out so that I’m not constantly waiting on pins and needles for the next horrifying development.

I’m supposed to be done with graduate school…if I’d never taken time off…it’s a depressing realization but it’s not like I can do anything about it, There is no way in hell I could manage classes like this, so I’d have to miss 1/4 of my next three laboratory classes, which means I could potentially graduate, but not with a good grade. Worse, I’d be exposing myself to a massive amount of germs while I have no immune system to fight them off.

Life is what it is, though. I make decisions because I have to make decisions. It’s not like I wanted to have chemotherapy. I’d hoped for some sort of IVIG therapy, or something biologic, but because of my resistance, and the likelihood I’ve developed antibodies to TNF blockers and other drugs, this was the last resort.

The whole irony of this is of course the nausea. My severe GI Behcet’s is what triggered the IV medication route, because oral routes weren’t working. I was pretty much inflamed from stomach to colon, and they knew periodically there had to be ulcers because of the bleeding. So now I’m on chemo, because I basically have severe systemic Behcet’s. Eyes, nerves, stomach, it’s all involved, and oral medications that are strong enough are too strong for my stomach to process. Chemo may make me sick, but the medication is still in my system.

So yeah, I’m tired. I’m feeling like a waste of space and time. I’ve never loved Thanksgiving, but it’s hard because I want to be normal again. my next treatment is December 19th, and honestly, I really want to do something with someone for Christmas. I don’t want to be alone. I don’t want to be left out. I don’t want to be me, or at lest the version of me that is stuck in bed sleeping and attempting not to throw up. It doesn’t have to be the guy, though that would be fun, it just has to be someone, anyone, who wants to see me that day. (Let’s be honest, the guy would be fun, especially since he’s out of town now, and will be again the first week of December.)

Now, before people judge me, “You’re trying to date while having chemo? Focus on getting well!” <—-

I am focused on getting well. The guy is the guy because it is what it is, I’m letting him choose, and while it isn’t always easy, in the end, I’m accepting of whatever comes of it. Plus if he can’t handle sick me, then the doesn’t deserve not sick me. My ex couldn’t handle my sicknesses, neither could my mom, so I’ve learned to expose people to the reality of who I am early on. Friends, potential people to date, doesn’t matter. I have this, it changes how I do things, take it or leave it!

But I still wish I didn’t have to do that.

See, the reality, the true, no bullshit reality, is that most of us, deep down, want that quintessential American dream. Nice place to live, maybe few kids, traveling, having someone to come home to, blah blah blah. I hate that in my core, that’s what I want, too. I want someone to go travel with even though I hate flying. I want to knock items off my bucket list, save up, and buy a house or condo. I love the idea that I could find someone who would be okay with buying a condo instead of a house, since my ex was completely against it. I want kids some day. Marriage isn’t important to me, which is an odd development, but I’ve realized that the legality isn’t what makes it important to the two people involved, it’s what makes it legitimate to the people around them.

Sitting here, nauseas, in a headscarf crafted by the guy’s mom, I wonder what my life will actually be like. Will I travel? Maybe it’ll be alone. I try and come to terms with who I am, who I want to be, and the reality of my potential future. Most importantly I close my eyes, and I whisper internally, “remission,” because until then, I can’t accomplish much. Does’ mean I won’t try, but it does mean accepting the reality of limitations.

Cytoxan: Round One

Feeling Useless, and Calling Out Fakers

So my doctor has decided that the Azathioprine needs to stay in rotation, but we’ve cut me down to 25mg for a week, then increasing to 50mg after that…if I’ve tolerated the 25mg. The thing is, who decides what “tolerating” a drug means? For the past two days I’ve opted to take it in the mornings vs. the evenings thinking taking it with more food, and less of my other medications, would mean less symptoms. I did do a little better, but I also felt like sleeping all day. I could probably go back to bed right now and sleep until tomorrow. Of course this could also be my Behcet’s flare so who knows.

As much as I hate feeling sick, I hate feeling useless the most. I’m someone who enjoys having a job. I enjoy spending time with the people I care about, even though I’m introverted, and when my illness takes that from me I end up feeling completely useless. The worst part is when someone you think is a friend, someone you expect to understand it, not only fails to understand you, but attacks you publicly for it.

My ex and I had a bad marriage, and as a result of some things that were said, and mistreatment, I took the step to get a no contact order. It was better for my health not to deal with the stress of dealing with him. A friend of mine had the nerve to insinuate I was weak for doing this, because my “recovery” would suffer. Apparently the only way to conquer abuse is to allow your abuser to continue to act however he/she wants to act, and “recovery” is having the strength to know that their words are just words, not statements of fact.

Isn’t it possible that both of us are right? That I have the right to legally remove someone from my life, because their statements cause me stress during a medically critical time, while at the same time I’m working on not internalizing their words?

It sucks because this friend would say that she couldn’t handle me venting about how hurt I was over the things my ex would say, because it put her recovery in jeopardy, yet when I took steps to end the contact, suddenly the insinuation was that I was weak. Then I found out she was claiming to have gastroparesis, and I was done. I’m the one who talked to her about what it was, and how to be tested, despite the reality that she didn’t meet a lot of the criteria. Her issue, she said, was binge eating disorder and anorexia. We debated because my diagnosis of Behcet’s also included borderline issues of gastroparesis, likely due to periodic inadequate blood flow.

Then I did something I don’t usually do. I stood up for myself. Hard.

My friend is polyamorous, which is fine, because she insists it works for her. I decided to question whether or not her lifestyle was working for her partners. She would come to me whenever one of her male partners showed interest in another female, something considered acceptable, and then her anorexia or binge eating would flare and she’d end up in the ER. This effectively thwarted any potential meetings between her male partners and their potential additional female partners.

I wasn’t suggesting that she was intentionally sabotaging their attempts to add women to the polyamorous relationship they shared, but instead questioning whether or not there were unresolved issues regarding how she truly felt about it. Her symptoms seemed to flare at very convenient times, which doesn’t necessarily mean what she wad going was intentional, but rather that her eating disorders (anorexia and binge eating) may be triggered by emotional situations she herself hadn’t even really considered.

Except she had considered it. At one point she’d flat out stated that her partners had agreed not to add any additional members to their lives until she was more stable in her recovery. 

I think that’s admirable, that men would have such love for their partner they’d give up their right to seek out additional, and perhaps necessary, secondary relationships, in an effort to support their primary. That being said, there were things that didn’t add up. She stated she was kicked out of an outpatient program for being “too sick,” and that she needed impatient treatment, but that it would have to wait because she had to photograph a wedding. If you are so anorexic you require hospitalization, and you’re openly sharing this information, and you’re so damn insistent about caring for yourself above all things, why would you not check into treatment immediately?

Within three weeks she’d declared herself in recovery, without inpatient care, but her posts suggest that the care she’s receiving, care she laments she had to pay for out of pocket because the insurance companies wouldn’t cover evidence based holistic care, doesn’t really fit the care for a recovering eating disorder patient.

I got called out, online, without being named, for bashing her for not “appearing sick enough,” which was never something I said. She is sick. She does have an eating disorder. The problem is, she cannot and will not admit that the eating disorder is a psychological condition with physical manifestations. She’s on a mission to label herself with things like gastroparesis, so she can blame her vomiting on that versus the reality that binge eating until you vomit is a form of bulimia. Oddly enough, she blocked me on Facebook when I offered to speak with any of her friends, friend who were vilifying me based on the things she’d written, because I wanted them to understand that I am sick, too, and that I would NEVER claim someone didn’t look “sick enough” online, or in real life. My post was polite, and I said that I wouldn’t include her side of the conversation, just mine, out of respect for her privacy, but that I felt I had the right to talk about who I was, and where I was coming from, especially since our discussion had very little to do about health.

She questioned my mental health recovery, in the midst of a physical health crisis, so I questioned hers, and then all hell broke loose.

The irony, for me, is that I got a no contact order, which suggests (according to her) that I am incapable of defending myself or at least weak in my recovery when it comes to self esteem. Meanwhile she not only goes off about how sick she is, earning a massive flood of sympathy, but then proceeds to block me when I ask for the right to explain myself.

How is blocking me from being able to contact you any different than me blocking my ex from being able to contact me? Especially considering you claim the situations are similar, because you’re working on your “recovery.” 

I’m sorry, but seeing someone go to art gallery shows, take trips to Vegas an Tijuana, and live a life they love, until something they don’t want to do pops up, is a little irritating to me. Do you know where I want to be right now? In San Francisco visiting a friend, or at work, or out for a walk, or any one of a thousand things that doesn’t involve sitting on my couch hoping I don’t throw up the lunch and snacks I’ve been able to consume. She claims that she needs days to recover after these events, yet she does nothing to prevent damaging herself during such events. The truth about chronic illness is you miss out on things you want to do because you know your body can’t handle it.

As I sit here, staring down the three weeks until I get my blood tested to see if I should be feeling better, until hopefully the side effects wear off, until I get my MRI and results and my new nerve conduction test, she’s in another state visiting family. I think what bothers me is that there are always people who seem to absorb the illnesses of others, and utilize it for sympathy, and later, to become role models. When she found out about my PTSD, she magically had it, too, even though the symptoms she was telling people about made no sense whatsoever. She was counseling people with general anxiety, and no history of trauma, that even one panic attack meant you could have PTSD, and so people with random depression or anxiety, flocked to her for her PTSD prowess. My dog was a service dog and allowed to live in housing even though dogs weren’t allowed? She had a service dog soon after that.

We had a falling out before, years ago, when she pursued an abortion and bluntly told me, “I wanted a puppy not a baby,” despite knowing I faced infertility issues with my ex. I understand that she was in a bad place with her husband at the time, they were separating, and the whole thing was a mess, but the way she handled it was disgusting. She told people she had a severe illness requiring emergency surgery, and then cancelled photo sessions and apologized that prior sessions would be edited a bit late. I’m not saying she needed to tell her clients she was having an abortion, but even with friends she made it out to be this emergency situation that it wasn’t.

She’s had more abortions since then, and honestly it’s her right, but perhaps the holistic approach to family planning isn’t the best option if you’re constantly having to experience miscarriages or abortions. That’s the thing with her, really, is that the rules apply when convenient, and her friends, like me, often find ourselves fighting for the same rights she affords herself. It’s possible for me to work on not internalizing negative verbiage while at the same time opting to make it illegal for the person causing me so much trauma, to be a part of my life. She decided I was harmful for her recovery, for whatever reason, and blocked me, which should have been an “aha!” moment for her in terms of understanding that you can still be recovering while at the same time choosing to remove people that contribute to the thing which you are recovering from.

Of course I don’t think that was the case. She deleted me because she didn’t want to have to defend the un-defendable. She herself admitted that she handled the situation with one of the potential relationship girls negatively online, but that at the time she felt good about it. That right there I was proud of her for, recognizing she did it, and realizing that to live the life path she’s chosen, means having to have some damn good compromising skills and patience.

I wish I had her as a friend, mostly because her knowledge of medical marijuana and natural ways of treating things was beneficial. I still have to do things like undergo infusions, and take horrible drugs, but having someone around who knows of a non pharmacological treatment for nausea (yay peppermint oil) is helpful. We won’t be friends again, not the way things ended, and it’s probably for the best. When you’ve spent literally years trying to get diagnosed, it’s super frustrating to have someone meander into your life and start hijacking those diagnoses. Even if she does suffer from some medical conditions, the overwhelming issue in her life is that she can’t handle stress, and she loves attention. She gets “sick” then gets “better” and suddenly feels it’s her right to counsel others about their medical and emotional conditions. It’s actually terrifying. She once told me the best option for my severe kidney infection was garlic, which I’ll admit garlic has germ killing properties, kidney infections still require intervention with antibiotics.

I’m just so angry. I’m angry that in the midst of all this stress and drama and physical sickness, someone I considered  a friend, bashed me when I had a high point. I was thrilled about the no contact order, I had scored a couple dresses on sale, and was ready to go to LA for two days with the guy, and wham, she decided that judgment was the way to go in that situation. It’s absurd!

My trip to LA? Fun, but exhausting. I’m still recovering over a week later, because I refuse to accept my limitations. The live taping was amazing, but afterwards we got lost because neither of us had phones (rules of the show, though we found out after we could have left them with the check in people but whatever.) We walked for at least an hour, which would have been okay, but I wasn’t feeling amazing about 20 minutes into it. I’m out of shape from all the bed rest, but I’m also sort of in this uncontrolled on and off flare that sneaks up on me. The next day I woke up and I seriously wanted to die. We hung out by the pool, and talked about plans for that night, but I was sort of please when we went to dinner and he wanted to just go back and hang low. He felt bad, but I was in so much pain by that point, faking being “okay” was becoming impossible.

He saw me at a really vulnerable moment twice during the trip. That night I was curled up in the shower, desperately trying to will away the severe abdominal pains that plagued me. He came in and his eyes locked on mine, and I could see the concern, but then again, this wasn’t something I hadn’t gone through a million times before. I’d ruptured an ovarian cyst, but that wasn’t the cause of all the pain…still I let him sit on that as the excuse. Then my PTSD acted up on the way home while he was angry in traffic, and I was angry with my stomach for being uncooperative. For the first time in months I’d had to tell him to hold off on sex because of my pain level, and while we’d managed to have sex later, it still scared me.

Now he’s out of town, the pain is back, and I’m sitting here wondering how someone who can claim to be as sic as my “friend” is, juggles it all. She touts a support network that seems to be fantastic, but the premise it was built on is falling apart. How can she maintain a sexual relationship with both men, and not feel like she’s dying? (Answer is that she apparently has stopped having sex with the one, for the most part.)

Her attack on me wasn’t just about my ex, but about my insecurities with “the guy,” which honestly just makes me sick. Every person alive has insecurities while they’re seeings someone, regardless of boundaries, labels, etc. I may have additional insecurities because of my current and past situations, but that doesn’t mean I have to launch into some metaphysical analysis of my partnership with him. Nor does it mean I have to lock myself away and work solely on myself because I have the issues I have. I worked on myself, for years, if I hadn’t I’d never have left the abusive situation I was in behind.

All in all, I am sick. I feel sick. I hate admitting it and I hate asking for help, but it’s the reality of my existence. When my roommate judges me for being on the couch day after day when he gets home, I get angry. I pay my portion of the bills, who cares? I make efforts when I can, but it’s a struggle. I sacrifice something of myself to please him, despite the reality that he’s probably still not happy. (Example: I put away the dishes, most of which he made, and then loaded up the dishwasher with his disgusting smelling dishes from the night before. I sit around a lot because I’m basically on a mission to destroy my immune system, with the newest drug metabolizing into what is basically chemotherapy. Sorry if this makes me a little tired, nauseas and cranky!) I cleaned because the smell was making me gag.

He wants me to go out more, to be something I’m not, but then again, I want to go out more, too. The problem isn’t wanting, it’s being able, and my body simply can’t tolerate things like other bodies can. Maybe someday…but not today.

It makes me feel so damn useless : (

 

Feeling Useless, and Calling Out Fakers

Shots, Shots, Shots, Shots (LMFAO…the band, not actually laughing, anyone?)

So much has happened, and so little has happened, that it was hard to sit down and write anything at all about it. On one hand I know I won’t know for sure until the middle of July whether or not the Rituxan has done anything, but I know in my gut that it hasn’t. I don’t feel better, if anything, I’ve had more symptoms lately, minus the mouth sores. There’s a raging debate between my rheumatologist and neurologist (who keeps leaving the country due to his father’s illness then death) regarding whether my symptoms are Behcet’s related or not. They can go ahead and debate, I know my body, and I have a hard time believing, or accepting that I have something else going on in addition to the Behcet’s, that isn’t related to the Behcet’s. (What I mean is I doubt I have MS or ALS on top of Behcet’s, unless I’m captain of the bad luck train.)

Anyhow, I’ve had great days, and I’ve had days where I’m convinced I maybe one of the few people who die from the disease. It’s not melodramatic either. I have been so ill that I’ve thought, “Okay, well, it’s in my brain, and it’s killing me.” I have made plans to hit items on my bucket list, not because I think I’m dying for sure, but because my quality of life waxes and wanes, and I don’t want my moments of happiness to be dictate by spontaneity on good days. If I could still drive that would be easy enough, but without a license it’s hard to get up and drive a few hours away to go to Disney or whatever.

In a pathetic attempt to function I’ve decided to pursue pushing my doctors to give me steroid injections. I got one on Thursday, and felt GREAT…until last night, then today I was officially done. I’m taking methylprednisolone orally, but the dose is only 4mg, enough to give me wicked GI issues, but not enough to do anything positive for me. Yay.

My face is covered in itchy bumps, some ulcerate, some don’t, and the first steroid injection took away most of them, but then they came back yesterday. I’m going to LA on Wednesday to see a live show, with the guy, and I keep looking in the mirror wondering why anyone would want to be seen with me. My self-esteem is shot, and the high dosages of seizure drugs don’t help with the depression.

I have leg ulcers, too. Not too many, but a new one seems to crop up daily, sometimes a few show up, and I keep thinking this is it, the start of the recurrence. Sometimes I try and take a hopeful stance, the Behcet’s is just fighting against the monoclonal antibodies. In the end, nobody really knows.

The neurological symptoms came back yesterday. The headache was mild, till the nighttime. This morning it was miserable. I’ve looked into POTS (postural orthostatic tachycardia syndrome) and I fit the criteria to an almost perfect level. I don’t have issues with my blood pressure, but the rate issues are a constant aggravation. My headaches are positional as well. It wasn’t until 1:00pm that I could move from sitting to standing without having to immediately give up and sit back down, and it was hard to even get from lying down to sitting up when I first woke up. I’m dizzy, I’m having trouble keeping one eye open, and I’m even somewhat confused. The oddest symptom has been not always blinking in unison.You have no clue what it’s like to have one eye blink, and the other blink slightly later. It seems like it wouldn’t be that big of a deal, but it is bizarre and off putting. Trust me.

What’s bleeding?

  • Something in the lower GI, from the pain I’m thinking: colon, rectum, and (oh joy but most definitely) the anus
  • Something in my urinary tract
  • I have my period but it’s not like my period so it’s either coming from my bladder or my uterus decided to get in on the fun
  • Gums

So yeah, that’s all fun. I guess you could toss the brushing under bleeding but that’s a steroid side effect according to my PCM, so I suppose we should just stick in the corner, force it to play with itself.

Oh, and the fatigue. PLEASE lets not forget the horrible fatigue. The desire to sleep all day everyday, anywhere, and yet somehow I never can nap…

So nothing is better or worse, though maybe slightly worse because of the GI side effects from the steroids, and the whole, “My legs aren’t working,” thing. I have smoked a bit more pot lately to compensate for the nausea. Some doctors like to say that’s the reason I’m neurological symptoms. As if smoking enough pot so that you’re not still losing weight at an alarming rate is to blame for symptoms you’ve had longer than you’ve been in the weed game.

Shots, Shots, Shots, Shots (LMFAO…the band, not actually laughing, anyone?)

Just Say (YES) to Drugs

So I’ve spent the last several weeks convinced I was going insane. Not just a little nuts, like anyone with a new job, and on campus classes, who happens to also be in the middle of a potentially contentious divorce, would be, but honestly insane. Last week I met with my mental health doctor who prescribes my sleeping pills and anxiety medications,and she agreed that I was majorly depressed. Again, not a shock as I was sobbing over literally nothing as I sat in her office. We ran through all the potential drugs, drugs I’ve tried, drugs I’ve liked, drugs I couldn’t take because of the Behcet’s and my history of seizures. The most effective drug being the one most likely to cause seizures, and therefore thoroughly on my “never EVER take this” list.

I sat there, and I felt more broken than I’ve felt in a while. There is something about becoming emotionally broken that takes a harder toll on you than the physical breaking does. When someone sees you’re covered in bruises, or ulcers, or your eyes are super red, they see that you’re sick. When you’re mentally shattered, and good at pretending to be fine, it takes longer for those around you to realize you’re not okay. We settled on a drug, but she wanted my neurologist’s okay before starting. When he hadn’t gotten back to us in 24 hours, she said to go ahead and start it because she was concerned waiting longer was going to be detrimental. I needed this drug in my system, my depression was severe.

Then my neurologist called…

Did you know that Keppra can cause major depression? I didn’t.

I have this rule, I don’t read all the side effects because I take too many pills to really  spend my time worrying about the various things that could happen to me. I know what to look out for with the major side effects, and that suits me just fine. No need to worry about tornadoes in Texas if you’re standing on a shaking fault line in California. Point is, I didn’t know. They’d been steadily increasing my Keppra dosage, as my depression got worse, and then had the audacity to suggest psychogenic seizures even though my mood issues seemed to only become a problem after the dose had been increased.

The answer right now is halving my Keppra, and adding in Lamictal, something I was allergic to before, but the doctor is hoping I’m not allergic to this time around. I still have to start the antidepressant along with the sleeping pills, but I will say this: weed works wonders.

There was a time when I swore, even though it was legal for medical reasons, I wouldn’t do it. Now, I’m grateful that I have the option. In terms of my depression, anxiety, and sleep issues, it’s perfection. The same goes for my issues with nausea and appetite. I’ve given up on the idea of, “just in case of emergency,” because I’m sick of living in a body on the brink of giving out. Why should I wait till I’m in the flare of the century to use my vape pen or vaporizer? Why should I juggle a dozen pills that make it all worse, when I can alleviate the need for several with just one plant?

Look, I’m not saying marijuana is the answer to every ailment out there, but it’s definitely got some major pharmaceutical potential in it’s raw state. Why would I forgo the obviously beneficial plant, for the synthetic Marinol pills (that are federally legal) when they’ve been proven not to be as effective?

A friend told me to make a list of things I want out of life, and that I want out of a partner. (This stemmed from a talk regarding my woe over turning 30, mid-divorce, and feeling like I’d never have a husband and family.) I realized that a lot of what I wanted, were things I needed to be healthier to obtain. My exes scathing words, “nobody is going to love someone who is sick like you,” rung in my ears, but I heard them differently this time.

I need to love myself, illnesses and all, before I expect anyone to commit and love me.

I am a good person, I do good things, and I care about people, but I don’t have much in the way of self-esteem. My issue is that I feel defective and disposable, and having an illness doesn’t help with any of that. When you pull out your medication back, and stare at the bottles and bottles of pills, it’s hard to separate yourself from the illness It’s hard to figure out what parts of me are lovable.

So yes, I smoke medical marijuana, and I think it’s het only thing keeping me from having a physical and emotional breakdown at this point. My nausea is easing, my depression is lightened, and even my anxiety is more manageable. I’m still taking all my regular medications, but I was able to hang out with the guy (who is naturally just soothing to begin with) without being to overtly awkward. When you live most of your life in pain, alone, and uncomfortable, you start reaching for whatever makes it better. For me the only gateway Marijuana opens up, is the gateway to a better future.

Just Say (YES) to Drugs

Lungs?

Around the time I started having symptoms of an autoimmune disorder, I also started having symptoms that seemed to be asthma-like. I didn’t have asthma attacks, at least not ones that were so severe I had to be rushed to a hospital, but I definitely had moments where breathing was more than a little difficult. I noticed working out, or in the cold, I would not only have the familiar tightness in my lungs, but this hollow/cold/deep pain, in the middle of my chest. A few friends with asthma suggested I talk to my doctor because that was something they related to and felt could indicate that I had asthma.

I went and saw a sketchy pulmonologist, who did the workup for asthma, and was less than impressed with the results of my testing. (Personally I blame the technician who did the testing, but I guess since it’s been 9 years I should let it go and get a second opinion.) During the test my baseline lung function, including capacity, and then gave me a drug that would make it hard to breathe (methacholine challenge.) The problem was that the technician was getting frustrated with me because my baseline levels were so low, theoretically moving forward with the challenge was pointless. She accused me, repeatedly, of not inhaling all the way, or exhaling all the way. I assured her, after being forced to repeat the initial stages of testing, that I was doing everything I could to get to the damn baseline so they could do the challenge. Despite not hitting the target, they went ahead and gave me the drug, which made me feel like I was dying. Seriously, I wanted to scream, or panic, or do anything but breathe into the machine, because it felt that tight. Again I was accused of not trying. This was asinine. I wanted to breathe more than anything, and here this woman was, saying I wasn’t trying? Woman, I am trying to breathe deeper than I have ever tried to breathe before!

The results were, as you can probably guess…inconclusive. Why? I didn’t meet the baseline requirements for testing. My lung capacity was too low to get an accurate reading for the challenge, or for anything else they did that day. I basically wasted several hours being tortured. I was given a tentative diagnosis, “maybe you have exercise induced asthma,” and sent on my way with some inhalers. Over the years I’ve just gone with that diagnosis, despite worsening symptoms that have suggested something more is going on. I’ve used my inhalers, when I work out, and when I don’t, because sometimes I’m just too short of breath to function. Twice now I’ve been told I have asthmatic bronchitis…without actually being diagnosed with asthma. (Wrap the ridiculousness of that thought around your brain.) There was no infection, just inflammation, and lots of it, making me and air enemies.

From what I’ve read, organ involvement in Behcet’s isn’t very common, but in my instance I’m starting to think that more vessels are involved than previously thought. For starters, there is a big question regarding my kidneys. I get a lot of infections, but in between infections I also get bouts of proteinuria, hematuria, and other random signs that my kidneys aren’t always playing nice. I have signs of brain involvement, though no neurologists has felt comfortable lumping the headaches, balance issues, and seizures into the Behcet’s diagnosis, I’m confident that Behcet’s is to blame. My symptoms have lessened with Humira and steroids in the picture, which to me is a huge sign that something autoimmune is happening there. Lung involvement though? That seems to be insanely rare.

My lung capacity sucks. I can’t hold my breath underwater. I rarely get colds, which is spectacular, but when I do, it almost always settles into a lung or two. It’s not that I get pneumonia, I just don’t get your traditional nasty throaty cough and all that stuff. I feel the mucous, in my lung, but it just hangs out there till I can clear it through lots of steamy showers and mucous thinners. When I’ve been hospitalized and they bring the breathing toy to me, I always roll my eyes. I suck at that thing. I can’t get the ball to stay where it’s supposed to stay, and if I can for a few seconds, I’m near passing out.

How do you do things then?!

Okay, here’s the scoop on things I like to do, that involve breathing more, and how I try and make it work. It’s not as easy as using my inhaler! For some things, like walking the dog, I can bring my inhaler, and use it if I need to. When I lived in New York, even just letting him outside during the winter meant using my inhaler, but now that I’m in California, it’s rarely cold enough to trigger my need to use it. Longer walks here may require its use, but in general I try and struggle through if my heart rate is elevated. Why? Well, I have sinus tachycardia, which isn’t unsafe, just uncomfortable. Sometimes my heart rate likes to shoot up, and with some activities you want elevated heart rates. Exercise is one of those things, and walking my dog should get me elevated slightly. However, the steroids in my inhaler also cause my heart to race, and that is an uncomfortable feeling. If I’m already elevated, and use my inhaler, then it can become a big problem. I can even get light headed. Normally if I’m planning on taking a longer walk with him, I use my inhaler a while before, if I’m feeling constricted or if it’s cooler out, and then wait for the heart rushing portion to stop before we head out.

Warning: Sex Talk Below

Yes, sex, the other activity I enjoy that gets my heart rate elevated. The issue with this is that it isn’t just activity that makes your heart race when you’re having sex! You’re probably attracted to the person, and excited, and those two factors alone are going to elevate your heart rate. I try not to use my inhaler before or during sex, though if I need to use it earlier in the evening because I’ve vaped some marijuana, then sometimes it isn’t a big deal.

(I realize there will be people who think I shouldn’t be vaporizing marijuana when I have lung issues, however, I also have huge issues with appetite and other symptoms that outweigh the concerns. I purchased a high quality vaporizer to minimize the damage, and I never use my inhaler before smoking, because although that could theoretically get more marijuana into my system by increasing my lung capacity briefly, I want to be cautious about my lungs. I cannot, at this point, handle edibles due to my digestive issues, but maybe in the future that’ll be more common. I also don’t smoke daily, I may smoke 1-2 times in a week, then not at all for a week or two, it really just depends.)

Anyhow! Yes, I’ve had to use my inhaler during sex. It’s not the most glamorous thing in the world, but I’ve been lucky. I haven’t been with that many people, but I’d say the break down is that most don’t care. I’ve had some feel flattered that I needed to use it (I don’t explain to them that it’s my lungs not their performance…because if I’m breathing that hard I’m probably the one working haha), others look at me like I’m a nerd (small minority), and a guy who shares with me. Seriously. Nerdy, all out, hot sex, where you both need to pause and use an inhaler? It’s a win for all involved. The clear drawback is the heart rate issue. Depending on the partner (and the sex) my heart rate may already be up, or may elevate further during the deed, so I have to be able to express my needs.

There is nothing wrong with taking a time-out, or swapping positions so you’re doing less of the work.

Obviously if you’ve both hit the inhaler the above statement is kind of comical, but I guess that just depends on who is more winded, and more affected by the steroid rush 🙂 Usually it’s me, since I have the pre-existing tendency towards tachycardia.

Ideally I use it after sex, if needed, and that tends to be the way things usually go, especially with the guy who shares it with me. Sometimes we use it mid-sex, and take a breather (pun totally intended) but that’s when it’s a real marathon session, so hey, everyone is winning in that scenario!

I’m talking to my doctor on Monday about some lung pain I’ve been having, to see if perhaps it’s time to revisit pulmonology. Personally I think it is, and I don’t need a referral, but I want his take on things, and who he would recommend seeing. I’m okay if I’m just one of those people with crappy lung capacity, but it would be nice to know that it’s not getting worse, and that something else isn’t going on. I’d also like the option of owning a nebulizer for the times when it’s really hard to breathe and I’m taking 4-5 showers a day, more if my hot water tank can recover, just to relax.

Lungs?