Difficult Round of IVIG – Am I a Quitter?

I did IVIG on Thursday, and was supposed to go for the second infusion on Friday, but I just physically couldn’t. After talking with my doctor, and the infusion clinic, the thought is that I wasn’t hydrated enough, leaving me with more symptoms following the infusion, than I’d had previously. The main issue this round was feeling like I was covered in a sunburn, and deep muscle pain. Now, the general aching and sensation of heat, was something I remember from my last infusions, but the deep pain is 110% related to the steroids.

We don’t know why I get such intense pelvic pain following steroids, and there really isn’t anything I can actually do about it. I just have to struggle for 24-48 hours while the pain does its thing. I do think that being dehydrated plays a role, but there really isn’t anything I can do about that. I try my best to stay hydrated, but with gastroparesis, it’s difficult. Additionally, I tend to need more fluids than the average person to actually be hydrated, and again, we don’t know why. I do have a condition called medullary sponge kidney, but it’s only linked to an increased risk of UTI and kidney stones, both of which I’ve had the joy of experiencing, the former I am a constant recipient of.

I’ve been drinking slushes and water like mad, because they’ve decided to do the second infusion on Monday. I didn’t want to miss the full dose, but unfortunately that means that, just as I’m feeling better, I’m going to get hit again, and that’s pretty crappy. If I could receive the treatments at home, it would be entirely different. The real issue for me is getting to and from the infusion center. It’s about 20 minutes away, longer if there is traffic, and I don’t do well in the car. Yesterday I felt faint every time I stood, and today isn’t much better. If you faint during the infusion, you get an ambulance ride to the hospital, and I am not down for all of that drama.

IVIG is working, and I am happy that it’s an option for me, but I really am ready for doctors to take me more seriously. I know what I need to feel better and regain control of my life, and that is a port, regular IV fluids and vitamins, and IVIG, all of which I would love to have the possibility of doing in my own home. When I get a liter of two of fluids, I feel alive again. I know I’m functioning in a chronic state of dehydration, but there really isn’t anything I can do about it. I can’t drink more than I’m drinking now. Hell, even right now it’s difficult to try and keep down what I put in.

This blog will be short, because I am on fire, and I need to eat something as I haven’t had anything but a handful of cereal today. That’s the other side effect of IVIG for me, an utter lack if appetite for a few days. I’ll be ravenous soon enough!

Difficult Round of IVIG – Am I a Quitter?

Waking Up With Shingles

I woke up this morning after a night of not much sleep. My stomach was in knots so I couldn’t fall asleep. A few hours after drifting off, both dogs wanted to go out. A few hours after that, my big dog insisted on going out again (apparently he ate something that didn’t agree with him.) I finally get back into bed, but a few hours later my roommate left, which woke up both dogs, and I tossed and turned for an hour before just getting up. Part of why I tossed and turned was that my arm hurt really bad.

Here’s what you have to know about me. I’m a light sleeper for 90% of the night. There is a 10% window where the drugs and my tend to get bradycardia during the night, combined, and nothing in the universe could wake me up. Sometimes during that 10% window of time, I sleep in a weird position, or on something, and the indentation if the item was rough, can hurt. So I figure I must have slept on a weird piece of paper, or the edge of the unplugged heating pad, since the cover is missing and the edge is raised plastic.

Only the pain doesn’t get better, it steadily gets worse the more awake I am.

I do what any reasonable person would do, I look. Immediately I have two thoughts: the first is that I’ve got another autoimmune blister, and the second is that I have the beginnings of a blood infection due to the red lines coming from the blistered area. As my morning brain clears I realize the situation is a bit more dire than that. It looks like I have shingles.

At the moment I realize this, I start to argue with myself. I’ve had shingles already, like 8 years ago, and I’m only 31 (almost 32). Why do I have shingles again? Obvious answer is that I have an autoimmune disease and take immune suppressing drugs, but I needed to pout. The area with the blisters is small, but the area that has the redness is large. I call my primary care doctor to inform him that I have shingles and need to come in, but eventually opt to go to the ER because it was the middle of the day on a Tuesday and I knew it wound’ be too busy.

  1. It was shingles.
  2. I got to sit in a little area with a precaution sign because I’m contagious
  3. There was no topical option for making it hurt less, but I did get a script for vicodin that I’ll probably never take.
  4. I need to go pick up antiviral medication, that I also probably won’t take, because it messes up my stomach.

My stomach hasn’t been content lately, and they said that my other symptoms of fatigue and itching, could very well be from the shingles. In a way I’m sort of glad that this happened, because it gives me more hope for IVIG. Maybe I just started to feel a flare up sooner because my body was reactivating this virus. I also wonder if my own immune cells came back with a vengeance, and this is why I’m having symptoms. It’s like my body went back into overdrive, and it just cause chaos.

Or maybe I just have really shit luck, and I get to experience the joy of burning hot pain from even a light breeze, all over again!

I keep a positive face on in public, and in all honesty I really am okay that it has happened, on some level it’s funny and ironic, I’m just also over riding the struggle bus. (I watch this YouTube channel called the Frey Life, and one of the things they’ve been talking about lately is the struggle bus. I have never related to something so hard in my life.) Other symptoms lately have included my left eye becoming more and more bloodshot and blurry, skin dryness and lesions, horrific nausea, abdominal pain, and the urge to take a billion and one naps a day.

It’s hard because I want so many things but I also do my best to respect my body’s limitations. It would be super nice if my bod could throw me a little slack. I know that isn’t how it works, that I can’t control my body, but I do everything in my power to give it what it needs. When you can’t eat much in terms of diversity, getting the proper nutrients is hard. Not having a port has meant forgoing the twice per week infusions. I can’t afford to waste the veins I have left (all 1.5 of the at this point). One of the two reliable veins has lost half of it’s reliability because it’s starting to feel sclerosed.

I sit here and I think about how much I want to work but can’t. My primary care doctor won’t write the letter to disability without seeing me first, which is fine, because it gives us a chance to talk seriously about the port. If he’s not on board, perhaps the primary care doctor at the IV infusion center will take me on and get on board. I also have the option of switching rheumatologists, and the one potential option is also an internal medicine doctor. Maybe he’d be on board with it. The reality is I need a port. No doctor wants to be the one who has to deal with insurance verifications, approvals, and ultimately home health care until I get the hang of accessing it and flushing it myself.

Right now, though, I want to take a nice relaxing bath, while carefully avoiding my entire right arm from the elbow up.

Waking Up With Shingles

What Am I Worth

The struggle to accept my reality has been brutal today. While it isn’t ever easy, I am, for the most part, handling my circumstances with a positive mindset. I can’t control what life hands me, but I do have control over how I choose to react and deal with the good and the bad. With chemo, I had so much hope. There was this idea that it would do for me, what it did for my father’s lupus nephritis. I had hope, and then it didn’t work, at least not in terms of leading to remission.

Now we are chasing (or should be chasing) quality of life. There are so many options for me medically, that could help day to day. I had it in my mind that we would get a port, and an order for home IV fluids, and home IVIG. I had it in my mind that we would have IV medications available for my nausea and allergies, so that I didn’t have to worry about waiting for oral meds to work. Hope brought with it all the opportunities that modern medicine could provide.

Then I came back to reality.

For starters, I still don’t have a port, and I’m not sure if or when that mess will be sorted out. While everyone agrees I need one, the one doctor that everyone agrees should order it, doesn’t feel comfortable ordering it. My insurance might be switching, so there is that to deal with as well.

The biggest reality check, though, has been not feeling well despite IVIG.

I am enormously grateful for how much better I did following IVIG, and I know that we need to figure out dosing and a schedule…but falling apart now, and truly craving the next round, depresses me. I realize now, more than ever, that it is a process, and it’s a lifelong one unless spontaneous remission pops up. Despite the doctors insistence that we’ll switch over to harsh oral drugs, drugs I never want to take again, I am trying to accept that this is my life.

It’s okay to be sick, but how do I life this life? How do I sit home on a Friday or Saturday night, but find myself at 2am, writing on my blog, and struggling to deal with a horrible taste in my mouth because one of my medications has death breath as a side effect. (Okay, it may say metallic taste, but I assure you, this isn’t just metallic, it’s somewhat vomit like as well.) I feel so damaged. Sure, I work okay, but I don’t have all the features that the brand new models have. There is the livedo reticularis that has gotten so severe my skin a actually cracked in one place. There is the weakness, the stupid walk. There is the fact that I nap all the time and I’m still exhausted. (Yes, I’ve tried not napping, but I honestly don’t have control sometimes. I will fall asleep at a table while typing something.)

I wish I could take my own advice, because right now I have no self-worth. I see this broken human being who wants to be more than she’s capable of.

What Am I Worth

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)