I Think She’s Incompetent

My level of frustration is beyond critical at this point. I spent Thursday night violently ill, and because of my gastroparesis, it was extra awful. Threw up out of my nose, which is always fun. This just further reminded me that I need to get more bottles of IVIG this month. The issue? A nurse practitioner who doesn’t seem to want to practice.

When I first met her, she was with my regular rheumatologist. The three of us discussed my case, the plans (IVIG), and that the dosing schedule would be (for the most part) set by NYU. At the very basic level, NYU would be providing an outline of ideas. We have already tried almost everything. I’ve developed some sort of resistance to the biologic agents, and with my stomach issues, it is hard to treat me with something that isn’t in IV or IM form.

Cue the drama.

The nurse practitioner is under the belief that IVIG is chemotherapy, and I can only do it for six months. I spoke with her and got her to understand that people do it longer…but she still stated the longest I would ever do would be 14 months, then we’d go back on all oral medications.

I do not metabolize things appropriately. Oral medications are just an awful plan for me.

This woman tried to get me to leave the practice the second that my doctor went on maternity leave. She didn’t even do an exam at my follow up from IVIGl. Without much talking, she decided I would do  three days in a row in March, then four days in a row in April.

To boost the system and make the most out of chemo. (It isn’t freaking chemo!)

I hope they are prepared for an accent wall though, because the living room is stellar and needs some color!

I Think She’s Incompetent

Frustrated but Determined

So, IVIG went well, and I was feeling great. I still have symptoms from the autonomic neuropathy, but doctors were clear that those issues may not resolve. The most important thing is that the neurological issues have stopped worsening. In the midst of it all, my roommate and I were moving, so it was somewhat hard to tell if I felt tired because I was just stressed, or if I was still dealing with excessive fatigue, and other issues from the Behcet’s and related autonomic problems.

I was excited to see my doctor last week, because I wanted to discuss our plans for continuing IVIG, including scheduling, dosages, and getting a port. I had thought my doctor was back from maternity leave, but she wasn’t. This is a problem because the nurse practitioner covering for her, is not, in my opinion, competent. My rheumatologist had introduced me to her prior to my IVIG approval, though the plan to begin IVIG was already in place. When the NP took over for my rheumatologist, I was still waiting on the insurance authorization. Getting the authorization was complicated by the fact that my insurance company was taken over by another company. Some patients, including myself, had to wait an additional 6-8 weeks while new authorizations were drafted. I had been calling the office to make sure they submitted a second request, and put it through with a rush, as I was extremely ill. I’d been in and out of the ER and admitted to hospital twice, so I went to see the NP to explain to her that I needed another steroid pack, and for them to contact insurance.

When my prescription wasn’t phoned in within 24 hours, I called the office, after another 4 days, I called again, and asked not just about the steroid pack, but also about the IVIG referral. 3 days later I had to make yet another call, and was accused of filling the script (I hadn’t). The NP chastised me, and said she’d phone in another pack…the original had never been phoned in…and then suggested that I go to another rheumatology center, because IVIG wasn’t a standard Behcet’s treatment.

Insurance eventually approved IVIG, and I went forward with it. I had to tell the RN and medical assistants at the practice to explain to the NP that we had already put a plan in place to start IVIG. In fact, NYU was included in the decision to give IVIG a try. I was aggravated when she called the day after IVIG to see if it had worked because it felt like a setup. If I was honest about the massive headache and aching muscles, then she could use my words as evidence the IVIG hadn’t worked. She could also use my admission that it had worked, which would have been a lie at that stage, as proof I was just saying what the doctors wanted to hear. I felt utterly trapped.

So, let’s go back to my follow up last week with my NP. I’m excited because I don’t know I’m seeing her, but even when it is her, I’m convinced we’ll be on better terms. Now I know that IVIG mitigates my symptoms, and has the capacity to really give me back a quality of life. I’m also convinced she’ll agree to the port referral, because every nurse and other doctor I’ve seen, has stated that the port makes sense. Not having one is odd to most of my nurses, since IVIG for conditions like I have, typically lasts long term. Of course, NP unfortunately doesn’t know what she’s doing.

She walks in and says hello. I tell her about the side effects I had, but that I was also getting ill, and had been ill, for the past two weeks. I also state that I had discontinued my Cell Cept because of being ill. Immediately she becomes visibly annoyed. She starts asking why I haven’t begun to take it again. I tell her I have still been coughing a lot of phlegm up, and running periodic fevers. I have a history of bad bronchitis, and didn’t want to risk an infection. She tells me to go back on my full dose immediately.

Yes, folks, the NP responsible for treating rheumatology patients, was angry with me for discontinuing immune suppressing drugs during an illness…which is exactly what my doctor and pharmacist advised me to do.

I let it go. It isn’t worth arguing over, nor was it the reason I was scheduled for that day. We finally start to talk about the IVIG, and my side effects etc. I don’t get into a lot of detail, because it’s clear early on that she isn’t going to add anything of value to my treatment plan. First, she asks me why I want a port. I explain that it isn’t a want, that it’s just a necessity at this point. I tell her about the 2 IVs I’m supposed to be getting per week at my nutritionist’s office, and how I can’t always schedule them because of my veins. If I have any lab work, or infusions, during a week, I can’t schedule the nutritional IVs. It was also a concern for IVIG because, again, I only have 2 decent veins in my hands, and I was having IVIG two days in a row. They thought about leaving the IV in place, but I wasn’t comfortable with it given the placement on the thumb of my dominant hand.

Not only does she not hop onboard the surgical port train, she immediately makes it clear she’s not even at the right damn station.

She tells me that there is no point in getting a port because you can only do IVIG for six months. This was something she had stated during a prior appointment, but that I had already corrected her on. She began telling me the same thing she had previously, that IVIG is like Cytoxan, and you cannot do chemotherapy for more than the six month period at the doses I’m receiving. Again, I tell her that IVIG is not chemotherapy, and that patients at my IV clinic have been doing it for years, decades even. After telling me it’s not safe beyond six months…she then tells me that perhaps we can do 12-14 months, as she read a journal article where they had treated Behcet’s patients for around that period of time.

So…were you lying when you said it wasn’t safe or possible to treat a patient for longer than six months, or are you just trying to see me as little as possible?

Her plan of treatment is for me to do IVIG 3 days in a row next month, and 4 days in a row the month after that. It feels like a lot, but unlike the NP, I won’t pretend I know how many days in a row is normal for something I’m not familiar with (the IVIG infusions). Hearing her plan only made me more angry. I am struggling with IV access for two days in a row, now we’re talking about 3-4 days? She wants to do IVIG for 6 months, but could accept longer, but no longer than 12 months, at which point her suggestion is that I change back over to heavy oral immune suppressing drugs as well as steroids.

Basically, instead of continuing a treatment that boosts my immune system, and that we know actually works thus far…we’re going to get me to a point where I’m doing really well, then stop treatment, and go back to the drugs we know I don’t handle well at all. Really fantastic plan…

She kept talking about how she “read” that a lot of Behcet’s patients have GI issues, and that they tolerate oral medication therapy. After seeing me twice, she thinks she can just treat me based on a couple journal articles. I have extensive GI issues, including gastritis and gastroparesis. Both ease up slightly when my Behcet’s is in check, but they never go away. I have almost no blood flow through my celiac artery, which causes me issues. Sure, we could get my Behcet’s into check with IVIG…but stopping therapy is only going to cause my Behcet’s to act up, especially if we’re giving me more drugs orally at that point in time.

It was extremely frustrating to deal with a medical professional who clearly didn’t want to have me as a patient. I love my rheumatologist, absolutely love her, and I hate to be critical of someone she clearly trusts on a professional level…but the NP is just not qualified to be in charge of patients who don’t have extremely common ailments. She also doesn’t handle patients knowing more than her well at all. I don’t expect all of my doctors or nurses to know what Behcet’s is. I do expect doctors and nurses to lean on me for information if they are unsure. For this NP to dismiss my explanation of what IVIG was, is infuriating.

The more I think about how she talked to me about the steroid dose pack, the more angry I get, too. At the time I had dismissed it as a clerical error, but looking back even if it had been, she handled it all wrong. Accusing a patient of lying to get another steroid pack? Which, by the way, I hate steroids…she’s the one who is talking about putting me on some amount of oral steroids indefinitely!

I’ve debated emailing my doctor but I’ll wait until she’s back from maternity leave. I know I’m going to end up with a jugular line the next time I have my infusions, which absolutely sucks, but there isn’t anything I can do about it. Maybe then the doctors who can refer me to surgery, will refer me to surgery. With everything going on, it’s hard to have the medical professionals I should be trusting, become the enemy.



Frustrated but Determined

Wheelchair Observations (and Frustrations)

I know I’ve already posted today, but an event at the pharmacy made me realize that I needed to both vent, as well as discuss, my experiences with the chair thus far. What I’ve noticed is that people tend to fall into two categories when they see me in my chair: the first category is those that see me, make some sort of awkward eye contact, maybe say hello, and then run off. The second are those that clearly have seen me, but pretend they haven’t. The levels these folks go to ignore me includes even crossing a street to avoid me, then crossing back once they’ve successfully avoided me. (Yes, this happens, and the fact they think I don’t see them is sort of anxiety provoking.) Very few people treat me like they do others around me. It’s such a welcome respite when it finally does happen. (There are also those who know me, and freak out thinking I’ve been in some sort of accident. I have to explain to them how tiring walking is for me, because there seems to be this lack of knowledge…more on that later.)

The people who ignore me contains a sub-group that I find absolutely infuriating. These are people who not only ignore you, but ignore you to the point where they literally infringe on your space or rights, because not doing so would mean acknowledging your presence. Today was a prime example, and I finally decided to speak up for myself. I went to the pharmacy where a man with hospital bags was waiting for his prescription. I had Ky, with me, and my chair, so I staid off to the side, respecting his privacy and his space. The man was asking a lot of questions, and was somewhat aggravated, so I ran through some practice with Ky to keep him focused. (We had an incident where he was attacked at this pharmacy by a man with mental health and substance abuse issues, so I try to keep him on a specific task so we can work on overcoming discomfort. The pharmacy knows this, and has given me permission because they know that I would remove him should he bark or lose proper focus with me.) Anyhow, a woman came up behind me and avoided eye contact. It was clear that she was waiting in line for the pharmacy window, too.

Here is where things got aggravating.

Someone asked politely if they could pet Ky, I thanked them for asking but that he was working. I had chosen to go to the pharmacy while on a routine walk, so he wasn’t wearing any gear. The man was still talking with the pharmacist, and wanted his paperwork after all (even though he said he didn’t, and the pharmacist had thrown it out.) I maneuver the chair, and it is abundantly clear that I am going to the pharmacy. In fact, I had to move my chair to make enough room for Ky and I to both fit when the man finished and was ready to exit.

During the time while both of us were waiting, I moved to let her past in case she was trying to get down the aisle. We made eye contact, I smiled moved aside, but she broke eye contact quickly, and didn’t move. At this point I still stayed in line, but tucked Ky behind me a bit so we could kind of be more compact.

The man finishes his random rambling, and I go to move forward, when the woman darts around me, and goes up to the window. She doesn’t acknowledge me…at all.

Now I would say she was confused, except we were all waiting for quite some time. She knew I was in line. I’m not sure if she thought she just had to ask a quick question, and could run in front of me, but there is a separate window for that purpose. She also didn’t state that she just had a quick question. She didn’t address me at all. This has happened to all of us at some time, and usually when someone doesn’t know if you’re in line, they ask, or if they have a quick question, they will say so. This woman flat out banked on being faster than me, and on me not saying anything.

I did say something. Even though the pharmacist knew I was waiting, she didn’t say anything, which annoyed me because the regular pharmacists there all know me and would have spoken up. In any event, I politely blurted out, “Excuse me m’am, but I’m next.” She turns, makes eye contact briefly, then turns back to the pharmacist. Finally the pharmacist tells her that I’m next, and I’m allowed to pick up my prescription. All of this was amplified by the fact that my prescription, a seizure drug I’ve been on for years, wasn’t filled for over a week. My doctor’s office tells me today, when I call to complain, that it’s because I have to be seen and haven’t made an appointment. Nobody told me I was due for one…

My anxiety over using the chair, even when I do need it, is super extreme. I have pushed through that for the sake of my dogs, and because I can’t stay locked in my apartment forever. It will take time to build my strength back up, and in the mean time, I’m going to need some help doing some things. While I knew there would be those who looked at me with curiosity of some sort, I hadn’t expected people to act as though I didn’t even exist. She wasn’t an isolated case, though her actions were by far the most blatant. There are people who closely elevator doors, or cut me off on the street. There are people who have group conversations, but don’t include me even though I’m in the same elevator or walking with the same group.

One of the more awkward things has been people who don’t understand the reason I have the chair. There is this assumption that only people who absolutely cannot walk, need wheelchairs. I need a wheelchair for a variety of reasons. The main issue is ataxia and muscle weakness. It takes effort for me to keep my movements coordinated. Even if I’m not actively thinking about keeping my movements coordinated, I am. If it’s hot, or if I’m tired, it’s just amplified. Other issues include my fall and fainting risk. Whether it’s from not being able to eat enough, my chronic dehydration, or my body’s inability to sort out what to do with my blood pressure and heart rate, certain situations just don’t bode well for my ability to any onto consciousness. I’ve had people think that I want the chair, or that I’m exaggerating, but the fact is I hate needing it. I’d prefer to walk along with my dogs, and my phone, and my friends. Relying on a machine, in a city full of potholes, is scary. I’m also still prevented from joining in on some things because the chair can’t go in a car. I would have to take a bus or trolley while my friends took a car, and if that event is the beach? Well we better park close because my chair can’t get wet or sandy.

Someone told me once, on a day I felt like death, that I looked like I was doing better. I almost burst into tears because the woman was a leasing agent at my complex who was extremely judgmental of my growing need for reasonable accommodations, despite the low cost involved in making those accommodations. I wanted to shout at her that it had taken me forever to do my makeup, but that I wanted to feel pretty because I was in so much pain and having such bad nausea. It felt like I had to give in, and look as sick as I felt, for the complex and that woman, to take me seriously. The same thing happens sometimes with my wheelchair. I feel like I have to appear to be something I’m not, just to appease folks who want that stereotypical situation.

Today was a big step. Today I told the woman that it was my turn. I stood up for myself and made my presence known. Maybe I should thank her for waking me up!

Wheelchair Observations (and Frustrations)

I Have a Cold…and I Love It

Okay, I know that seems odd, but there is a reason I’m in love with the fact that I have a pretty nasty cold. In the past couple of years, when I would get a virus, I would get a flare. The flare would inevitably be worse than the virus. Prior to IVIG, I had a headache, and I just shrugged it off. Behcet’s and headaches are just hand in hand for me. Then after IVIG I had what I classify as an IVIG headache. I felt just, well, sh*tty for a couple of days. That is normal, from what I’ve read. Even if the rheumatologist’s temporary coverage felt as though I should have made some miraculous turn around, I knew from what I’ve read, and what I’ve heard first hand from other patients, that it would take some time.

Then I realized I had a cold.

I was sleeping a lot, had a little fever, and attributed it all to the IVIG. Except, the sleeping eased up, as did the headache, and my nose was bleeding and stuffy. I blamed the weather. I had a migraine, which happens to me when the weather shifts. I blamed a lot of stuff because I didn’t want to believe the IVIG wasn’t working. This morning, it dawned on me. I have a cold. I have a gross cold, and my gastroparesis is acting up because my appetite came back, and I overate.

Folks, my appetite came back. 

I haven’t been hungry in months, and suddenly having that drive to eat again was so bizarre. I will always have gastroparesis, my celiac artery is blocked, and it can’t be opened. I also have a history of GI issues that just bogs the system down…but my intestines are moving again which is the main reason (I feel) that I wasn’t hungry. For me the delayed stomach emptying causes gastritis, acid reflux, and bloating/pain. The lower GI ulcers kill my appetite, cause pain and bleeding, and just generally make me miserable. That seems to be tied in more closely with the Behcet’s.

Beware: I’m about to discuss poop.

I have been pooping. Not as often as “normal” folks, but I am pooping. Prior to IVIG I was going 10-14 days between bowel movements, and those movements were pathetic. Nausea, pain, blacking out, just total brutality, for the smallest bowel movement. Doctors often accused me of “pushing too hard,” but I never pushed. Why push when there isn’t anything causing any urge to push? Lately I’ve been panicking when the urge to go hits me. It sort of comes out of nowhere, and is like, “YOU HAVE TO GO NOW!” Of course, it isn’t that dire. (Except when I ate a gummy edible containing gluten. I got horrendously sick, pooped my pants, and couldn’t figure out why. Later it dawned on me that gummy candy often contains gluten, so I checked, and yup, the edible was the culprit.)

My point is actually pooping is weird, and it shouldn’t be, but it is. I am torn between excitement and nausea. I’ve tried explaining it to healthy friends, but only a similarly GI sick friend understands it. When you just don’t go to the bathroom often, your body can’t really handle the sensation. My nervous system is so used to not feeling anything positive from my gut, that even a normal bowel movement is misinterpreted (at least that’s how it feels.) Hopefully with time I can get used to them again, and hopefully they remain consistent. Even going just 1-2 times a week is an improvement right now.

I have to talk to my rheumatologist about putting in an order for a port, even though I know she will fight me on it. The reality is that I’m existing in a state of malnourishment, or dehydration. The only reason I’m not currently losing weight is that I stay on top of calories, and my thyroid gave up working. It isn’t a healthy way to prevent weight loss, and I’m still losing loads of muscle. I can’t do my infusions 2x per week for fluids and vitamins, unless it isn’t an IVIG week. Even the week after IVIG is dodgy, since they have to use two different veins for IVIG (unless I go home with the IV in place. This is something I’m not comfortable with because of issues with phlebitis and clotting. I just don’t personally feel it is a good fit for me. I’m also sure my dogs would find a way to hurt it.)

The other issue I’ve run into, emotionally, is the expectation others have that I’ll be miraculously healed by IVIG. IVIG is a treatment protocol, it isn’t a cure. There may be a day when I can go off of it and be in remission, but going off of it is risky. With neurological issues involved, it just isn’t something I’m overly in a rush to test out. Some people spent their lives on IVIG. I will need medications for nausea, I will need IVIG, I will need my wheelchair at times (though hopefully less as time goes on). The damage done to my autonomic nervous system isn’t all fixable, in fact, some issues will definitely remain, and that is okay.

IVIG wasn’t about a cure. It was about survival.

I have a tendency to downplay the seriousness of symptoms when talking with friends and family. It’s something my family has a tendency to do. There are issues we still need to address with me cardiovascular wise that I put on the back burner. They’re likely related to the autonomic stuff, but we just won’t know until we look into it. The biggest question mark is the swing in my heart rate. I have some serious bradycardia sometimes, and it is sort of terrifying. I don’t think about it unless I’m on a heart monitor, and I’m setting it off, but it’s taxing on your heart to get super low, and then go back to normal or even into tachycardia. Again, I’m hoping IVIG fixes things by stopping the onslaught against my autonomic nervous system.

I Have a Cold…and I Love It

IVIG Anxiety and Expectations

As my symptoms have gradually gotten worse (due to finishing my Medrol dose pack), I’m ready for IVIG. However, tomorrow feels so soon! There is this weird sort of anxiety that goes along with a new infusion, the first is will I have a reaction of some sort. The second is will it work? As positive as I might seem outwardly, inwardly I have so many worries regarding the process. I want it to work, and I do believe that it will, but the fact that I don’t have a port, and that I have to go in two days in a row, makes me nervous. If it does work, I know that we will be putting in orders for a port, but there is still the long process of waiting, asking insurance, and waiting some more.

I’ve been accused of wanting to be sick, or faking the severity of my illness, and it’s frustrating. “You can walk, why do you need a wheelchair?” Yes, I can walk, but not far, and not without a high risk of falling. Today is a particularly bad day coordination and reflex wise. Even getting around the apartment is challenging. I’ve even had to modify how I’m sitting to type, because my hands and arms are jerky. As for eating, some days I can eat more than other days, but no day is without aggressive nausea. I would give anything to be “normal,” but I’m just trying to cope with what I’ve got.

It’s hard to need assistance. I’m not someone who asks for help, but here I am, dealing with the worsening of my disease process, while also dealing with judgment for the uncertainty of my wellbeing day to day. Yes, I can have a great day, followed by an immobile day, or vice versa. There is no way for me to know today, how I’ll feel on Saturday…though from other people’s explanation of IVIG, I would anticipate feeling somewhat crappy. Right now naps are life, so it won’t be that big of a deal.

There is judgment, and I can handle it, for the most part. I just hate having to defend my illness. It’s one thing to prove you can do something despite being sick, it’s another thing to have to prove you are sick all together. I don’t want to prove I’m sick, I want to prove I’m capable. On days I’m not capable, I just want understanding and patience.

IVIG is my chance at a more normal life. If I get a port, and IVIG works, I could technically do IVIG without having to go to the infusion center. I could do IVIG at home, on my own time, and work around that schedule. I could also do my IV fluids and vitamins at home. People don’t understand this end goal. They want me to shoot for remission, and while that would be great, I can’t live in a fantasy world. Right now it’s about getting back to feeling more normal, and the best way for me to do that is to get to a point where I could do treatments to support myself, at home.

For now, let’s get through tomorrow. Round one of IVIG.


IVIG Anxiety and Expectations

When You Just Can’t


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

Reflections and Fevers and Dehydration (oh my)

This staph infection sucks in a bizarre way. It’s relatively healed but of course I need to keep taking antibiotics. I won’t finish the full course, and I never do. My doctors are okay with it at this point given how horrendously they impact my body. I wasn’t able to go get blood work done today because the man delivering my wheelchair had a fever, so he moved my appointment to Wednesday. I need the chair to get to the lab, therefore, no blood work.

In any event, the blood work is for the allergist, and until that is done, antibiotics and I are still not on great terms. Of course, infections and I don’t get along so well either. He had explained that my body may be hypersensitive in general, and any infection, certain drugs, and certain foods and drinks, can all trigger allergic type responses. The idea makes total sense to me, given that I’ve told nurses for years, “I’m allergic to nothing and everything,” to explain random bouts of hives. It just sucks that Tylenol does nothing for any of my pain, and is now the only acceptable pain reliever per the allergies.

Yes, the doctors did okay the discontinuation of antibiotics early, if my symptoms had resolved. No, I’m not lying.

There is a valid reason for this aside from the allergy issue…antibiotics just make me really really sick. I’ve had suspected C. diff on more than one occasion, and after weeks of constipation, I am officially no longer backed up, courtesy of the Keflex. Of course any antibiotic can cause diarrhea. They treated me for C. diff once, without culturing me, and it resolved, but I hadn’t finished those antibiotics either due to an allergic reaction. Why not get tested to see if it’s hanging out in my gut? First off, you have to have diarrhea to have the test done. (You can only provide a liquid sample. No solids at all or the test can’t be done.) Secondly, I don’t want to be put into isolation for-freaking-ever.

I’m not explaining to anyone who ever visits me in the hospital, that I’m in a gown and whatnot room, because I’ve got C. diff just hanging out in my bum. 

Yes, I know it isn’t that dramatic, but please. I have so much going on, I don’t need that added to it. The antibiotics have somehow increased my bowel movements, but decreased my appetite. I think the low grade fever and nausea is probably to blame. As much as I need the wheelchair as soon as possible, I’m also dreading it. There is something about a power chair, that for me, seems so much more dire. I see someone in a manual chair, even if it has some sort of power assist, and I figure they’re okay. I see the power chair, and my mind just goes straight to sickly things. I feel weird that testing showed that as the best option, even though I know with my hyperactive reflexes and ataxia that it makes sense. I guess I’m just insecure.

Now to go and walk the dogs with a fever, the shakes, and dehydration. I did manage to drink some of a cherry slush, and eat some tots to provide my body with some needed salt, but I simply don’t feel like waiting for an elevator and going down 24 floors. This move can’t come soon enough. The idea of being just 2 floors up, and better yet, not being in a city with the rats, cockroaches, and hepatitis A outbreak. The rat realization was new, and while I love them as pets, the ones that live on the streets definitely harbor disease. It’ll be nice removing that element from my daily struggle.

It’s hard explaining to people who think you look like you’re doing well, just how much effort it takes to put on that facade.

Reflections and Fevers and Dehydration (oh my)