Port Placement and Panic

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

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

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

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

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

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

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

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

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

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Port Placement and Panic

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

 

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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