Governmental Nonsense and Way Too Many Tears

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

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

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

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

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

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

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

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

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

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

 

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Governmental Nonsense and Way Too Many Tears

Loving Yourself – It’s Not Easy to Learn

Backstory: I know a lot about dysfunction.

That’s pretty much the most important part of the backstory. I don’t have a real decent track record when it comes to knowing how to be loved. It’s one of those things that I see other people just instinctively know how to react to, but I never really have. I married the first guy who told me he loved me. I was 15 when he told me he loved me, and 20 when we got married. I should also mention that I blurted it out first, not thinking, but definitely meaning the words. He quickly followed up with, “I love you, too,” to which I shouted, “No!” and then dramatically burst into tears.

I told you, I’m pretty f*cked up.

After that there wasn’t another relationship where love was really even talked about. There was a guy I fell in love with who was about to say something along the lines of stepping up things with us, so I quickly sunk that ship faster than the Titanic in an iceberg storm. Nope. Wasn’t going through that hassle again. I went back to my abusive spouse, and just stuck with what I knew.

The last thing he ever told me was that nobody would ever love a sick girl like me.

I talk about it, and it’s always in a way that mentions how painful the words were, while also playing up my determination to prove the words wrong. The thing is…I don’t know if I ever will, at least not when it comes to me and romance with someone. I don’t know if anyone will want to love someone who may not be able to have children, at least not conventionally. I don’t know if anyone will want to love someone who has to rely on IVIG to stay alive. I don’t know if anyone who ever knows the extent of my disease, will be willing to take a chance on a forever with a question mark hanging over all of it. I do know I want more than anything to start chasing down bucket list items, ideally with someone who loves me as much as I love them…

Then I realized that I don’t love myself. 

It was a shockwave because I’ve always talked about my low self-esteem. Seriously. I take baths with hand towels over my stomach so I don’t have to see my livedo reticularis, or my chubby areas. Usual I try and obscure other areas I’m uncomfortable with, but I can’t because of the port. I’ve been back in San Diego for almost three years, and I’ve been to the beach a handful of times, and worn a swimsuit maybe 10 times total, but only 2 times without cover on. It’s just not something I’m comfortable with. I’ve never felt attractive, and it isn’t even a weight thing. When I’m heavy, I feel too heavy, and when I’m thin, I feel too thin. There is just this inherent wrongness that plagues me. Even when I have to do my makeup, I try and rush, and I never focus on my full face. Photos are a nightmare.

Personality wise, I know I’m a good person, but I’m not as able bodied as other good people, so I don’t feel as though I am a valuable person. That reduces my ability to love myself. Tomorrow I have nutrition, and I’m going to talk with her about how we can handle some of these things, including working with the therapist at the practice. My current diet isn’t helping, because I’m living in a constant sugar crash, or feeling like I’m going to be sick because I’ve tried the wrong combination of foods.

I need to embrace my reality, I am a spoonie, I am a sick chick, I won’t get better but I can manage better. I also need to learn to love myself despite all of this.

Maybe someone will tell me they love me, and mean it, and be there through the ups and downs, because it would be amazing to have someone to share this life of mine with.

Loving Yourself – It’s Not Easy to Learn

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

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

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

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

It worked.

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Port Placement and Panic

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

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

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

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

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

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

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

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

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

Port Placement and Panic

When You Just Can’t

THERE WILL BE A TRIGGER WARNING ABOUT 1000 WORDS IN. PLEASE, IF TALK OF SELF HARM OR OTHER RELATED BEHAVIORS TRIGGERS YOU, DISCONTINUE THE READING AT THAT POINT. THANK YOU AND KIND THOUGHTS ❤ 

Today I’m somehow depressed, but more positive. I don’t know if that makes any sense. The best way I can describe it is chemical versus rational. Chemically I’m out of whack, but that makes sense. I haven’t been taking in a ton of calories, which led to me almost getting a period. Let me explain…

Your average female who menstruates, thinks that underrating results in losing your period…and it does. There is also a reverse mechanism though. TMI alert…I have an IUD. When I first got it I was not pleased, I basically spotted for a month, had terrible cramps, and wanted to punch my gynecologist in the face. (For starters, he gave me a generic version of Mirena only approved for 3 years, not 5, but told me he was putting in Mirena. It was super fun finding out that I got something else after it had been inserted. (Bonus points for the fact that he had opened my cervix, realized he forgot something, and had to open my cervix a second time. Don’t worry, he’s not my doctor anymore.) After a month though, my periods stopped.

This was 2.5 years ago. Since then I haven’t really had a period, which given my brutal periods, was a good thing. When I started getting really sick, right before starting Cytoxan, I hemorrhaged. I brushed it off as a really bad sudden period, but when it happened a few more times, I went into my gynecologist. At this point in time I was around 120 pounds, and I’m 5’10”. I went in, and the first thing my gynecologist told me was that I had lost weight and I looked good.

I was so malnourished at this point, my hair was falling out, I was growing white fuzz on my body, and I was literally incapable of warming my feet and hands. I looked like I was dying, and I felt like I was dying, and yet this doctor had the nerve to say I looked good. What the…

As we have established, he’s not my doctor anymore. What he told me made sense though. I can’t have estrogen containing birth control because of a family history of blood clots. With my one artery being potential impacted by Behcet’s, there was also an increased worry over whether or not I was personally at additional risk from the Behcet’s. I was informed that my body was suddenly producing extra estrogen in an attempt to instigate hunger, because I wasn’t taking in enough calories. These bursts of estrogen were causing intense bleeding. Fair enough, but still aggravating. Plus…if I looked so great, why was my body willing to risk bleeding like that in order to cause hunger pangs?

I really should have reported him. We all have different preferences and visions of beauty, but as a medical professional your focus should be making sure your patient is healthy. I had lost a significant amount of weight, and was no longer at a safe weight for my height. Perhaps my slender frame was normal in his life, but it was something that warranted investigation as my physician. 

I’m lucky right now. My doctors noted the 30 pounds I lost, because while it was fine to lose it, and while I’m still in a healthy weight range, and could even lose more weight, the quickness with which that weight came off was NOT healthy. 30 pounds in 30 days is not a goal.

So tomorrow my wheelchair comes. Today I did nothing. Every time I stood up, I got shooting pains in my head, neck, and lower back. They have never found the source, and have suggested dehydration each and every time. Given that I haven’t gotten my infusions in a while, that’s 110% true. I am dehydrated. Still, these headaches and related back pains, just murder me in terms of movement. I’ve also just been weak. As embarrassed as I am by the thought of the chair, I know that I’ll be able to go get things for myself again, decreasing days like this were I’m struggling. (I can’t afford delivery of groceries right now, and I can’t tolerate water no matter how hard I try.) I wanted to go see people today, but I was stuck inside. I struggled to even take my dog out. Thankfully my roommate took him out just now so I don’t have to attempt to navigate the streets tonight.

Chronic illness is a lot of fighting, but it’s a lot of acceptance, too. When I started the signs of bleeding today, I faced the fact that, even though I wanted fries, one sleeve of fries and two pieces of toast in an entire day, is just not enough to live on. I forced myself to eat maple syrup today even though I desperately didn’t want it, because I knew it was calorie dense, and liquid. I put it on toast as a sort of pseudo french toast.

Again, it wasn’t good, and I don’t recommend it as a fun treat. It did what it needed to do, and that was the point. Gastroparesis changes how you see food. It’s fuel, but it’s also something you kind of chase impulsively. If I know something won’t make me vomit, or writhe around in horrid pain, I’m going to eat it. 

My failure to get out and do anything today, the pain, the fatigue, the anxiety over the chair, I logically worked through each thing…but my brain chemistry felt like it still need to give me a little shove via depression. I have depression and anxiety because of my PTSD, but I suffer because of the major depression from my Keppra. How do I know? The symptoms are so different. With things relating to my PTSD, talk therapy, thinking through the situation, finding routines, they all help with the symptoms. Plus the symptoms are less life limiting. Sure, I’m startled easily, hyper vigilant, and can’t handle some situations, but I’ve come a long way via cognitive behavioral therapy, and conventional talk therapy.

Major depressive disorder doesn’t care how much you talk…

Trigger Warning: Below there is talk of self harm and suicide. If you are triggered by discussion of this subject please discontinue reading this blog. If you or someone you know is thinking of suicide, please call, text or message, the suicide hotline (in the United States. I apologize as I don’t have information in other countries. I do believe 999 is emergency services in the UK, and 000 is Australia.)

Suicide Hotline: Call 1-800-273-8255, Available 24 hours everyday, there website is https://suicidepreventionlifeline.org

 

______________

One thing my major depressive disorder causes, that my PTSD and related anxiety/depression never caused, is really obsessive suicidal and self-harm thoughts. I have had thoughts of both in the past as a result of my PTSD, and medication decreased those thoughts, but they were never as intense as they are with the major depressive disorder. I will become immobile, just stuck in bed. Then I’ll drag myself to the shower, and just climb in wearing my clothes. I would look around and just see items I could hurt myself with, or even kill myself with. Living 24 floors up when your meds aren’t sorted out, is a real test of self-control. Thankfully I talked with my doctors, and we began a treatment plan.

Today was just one of those weird days where the meds worked, but not well enough. I felt worthless all day. Financial struggles caused me anxiety, but the inability to socialize was the worst. I’m generally okay with being introverted, but when my medical issues make it impossible for me to go out, it creates a small crack for the botched chemistry to spill out of. There is something so bizarre about feeling utterly worthless, feeling like you should just run into the woods and never talk to anyone again, but also recognizing the irrationality of that thought process.

Thank you biochemistry for the gloriously f*cked up mess, that is my brain on Keppra.

To be totally fair it wasn’t normal before the anticonvulsant came into my life, but it was manageable without medication. I am not embarrassed that I need medication to keep myself safe. There was a time when I was ashamed of my thoughts. I didn’t want anyone knowing how violent and real they were. Now I realize the importance of recognizing the severity of that thought process, and the need to ask for help.

Chronic illness warriors, spoonies, sick people, whatever label those of us choose to use, tend not to be folks who really love asking for help. We’ve been in the hospital. We’ve had to call nurses every single time we had to go to the bathroom. We’ve eaten bad hospital food. We’ve gone through painful procedures.

We are conditioned to prove our independence…so if we ask for help, we probably need it badly.

That was today. I don’t feel well, but I’m also oddly at peace with it in a rational sense. I can tell you why my stomach is messed up. I can tell you why my asthma is flaring. I can’t tell you what this headache combination is, but I can tell you that it’s probably related to the fact I haven’t had enough to drink today. Now I’m going to take a nice bath since last night’s bath was ruined by a lack of hot water.

If you are reading this, and you’re realizing that you have a logical side of your brain that shouts over that illogical biochemistry induced portion, I’m sending you a gentle hug via our phone/tablet/computer/whatever. You’re not alone. Focus on that little rational voice shooting from the back, it’ll guide you on the right path. 

When You Just Can’t