Neurobehcets – When it Doesn’t Make Sense, but Does

Prepare yourselves for a little breakdown of my neurological funkiness, and what may or may not be related to the Behcet’s (but probably is). The reality is we don’t have a way of knowing exactly when my Behcet’s began, though likely in childhood. We also have no way of knowing when my neurological issues began with Behcet’s, though the thought process right now is somewhere in my teens.

My oral ulcers started in late elementary school, and we just figured I was a kid who got a lot of canker sores. I also got a lot of strep throat. Then in middle school I had these annoying episodes where one arm would jerk, and I would make a squeaking noise. I never saw a doctor, because it didn’t happen often enough to create concern, but it was annoying. (I would later be diagnosed with Tourettes, however, the occurrence is so infrequent, I never even remember to mention it in my medical appointments.) In my late teens I started to notice I had crappy balance.

This is where it gets important: the only reason I noticed, was because my friends pointed it out.

When we would all walk together, the ongoing joke, which was also the truth, was that everyone needed to walk on my right side. I tended to veer right, and if the group didn’t stay on that side, I wouldn’t walk straight, and would end up missing the conversation, or even trip. At 16 I’d torn a disc in my back (at the time we didn’t know the disc was injured, it took five years to get a scan, but that’s a whole different story). When I’d get wobbly or off, we just sort of figured it was back related.

Then in college, at 18, something scary happened. I got up out of bed, and my right leg was useless. I could move it, but I couldn’t really control the movement, and I couldn’t keep my foot up. A friend helped me get to the health center, where we found out I had no reflexes in my right leg. He hit my knee over and over and nothing. I was told I likely had a pinched sciatic nerve, aggravated from the prior back injury (which still hadn’t been scanned) and sent back to my dorm with crutches.

Yay student health systems! 

By 20 I knew I had something autoimmune going on, but my brain wasn’t really a concern. I had a seizure, but I’d been drugged, so the thought was obviously that the drug had induced the seizure. I developed PTSD, and future seizures were assumed to be psychosomatic. Except, they weren’t. I had also begun developing issues before my PTSD, where I would get dizzy, lose feeling and coordination on my right side, and begin to slur my words, or forget them all together. It was terrifying, and I’d often just have to sit in stores and wait for it to pass.

Eventually I saw a neurologist who misdiagnosed me with juvenile myoclonic epilepsy. The drugs made me sick, and my balance issues and lapses in focus continued. I would be okay, then have intense headaches and be stuck inside for days. Sometimes they’d say it was a migraine, but other times they couldn’t sort it out. There times when it was so bad I refused to go to the ER because I didn’t want to get up off the bed or floor. Once I dropped in the kitchen from the pain, and just laid there for nearly four hours.

A new neurologist saw me, and looped back to psychosomatic issues. They diagnosed the Tourettes which was random, but inconsequential with all the other issues. Thus began a decade of neurological struggles. Some neurologists believed me, others insisted it was a psychological issue causing seizure like episodes. We took videos of muscles spasms I couldn’t be controlling. We took videos of me trying to walk during episodes. We did whatever we could, but if it wasn’t on an MRI, they didn’t care.

I was actually blacklisted from a neurologist’s office because he was sick of me demanding that he figure out what was going on. Another told me I had MS, before later telling me he was wrong.

My current neurologist is amazing, and has stated that he believes my issues are 100% because of my Behcet’s, but he won’t diagnose neurobehcets because I don’t meet all the criteria. The only criteria I’m missing is sign of brain stem atrophy, or lesions. I’ve been receiving treatments since before neurological issues presented, and in fact, the neurological issues worsened and became noticeable, when I was on a hiatus from immune suppressing therapies.

I never really thought my neurological issues could be related to my Behcet’s, until I noticed the lack of coordination coincided with flares. Then I thought back to all the years, all the signs, and my heart sunk.

So now I’ve seen the new rheumatologist, and he, without a moment’s hesitation, declared neurobehcets as the culprit. True, I don’t have lesions (yet) or brainstem deterioration (yet), but isn’t that a GOOD thing? Even textbooks on the issue of neurobehcet’s have admitted that the criteria that exists is based on limited patient samples. Plus the reality is that it’s a rarer complication of an already rare disease. In my case, having the HLA-B51 subtype does put me at an increased risk of certain neurological impacts of the disease.

The question becomes what are my issues from NB (neurobehcets):

  1. Ataxia
  2. Seizures
  3. Fatigue
  4. Lack of coordination
  5. Muscle weakness (especially in heat)
  6. Hyperactive reflexes (makes anything that triggers involuntary movement in my legs extraordinary challenging to deal with. Shivering? Game over.)
  7. Headaches
  8. Autonomic neuropathy – which impact me thus far via:
    1. Issues with regulating heart rate and blood pressure
    2. Digestive issues, primarily lower GI issues involving intestinal dysmotility, and also aggravation of my gastroparesis
    3. Temperature regulating – this becomes a problem with things like hot baths/showers/tubs, or if I have a seizure. It’s normal to get warm during a seizure, but I struggle to come back down temperature wise. I also don’t get fevers when normal people do, sometimes. It’s frustrating to have a severe and painful kidney infection, but no fever. Doctors don’t tend to take you seriously

I’m sure that there are other issues I’m not even aware of, because I’ve just lived with them as they’ve shown up in my life. A friend was staring at me as I missed the keyhole several times. It’s normal for me. I didn’t realize until that moment, that most people can put the key, into the keyhole, without several bother attempts. I’d simply been doing it that way for a long time. The odd thing is, I never missed a vein when I was a phlebotomist, but I also would shake violently after each patient, and be exhausted after my shifts. I was also healthier at that time.

Acute NB tends to hit, and then go away. It can come back, but a course of heavy steroids, often IV, tends to knock it out. This is what was assumed to be happening when I was hospitalized a year and a half ago. Now, at the time, they didn’t know what was going on, so for six days we tried to deal with my heart rate being all over, from too high, to way too low. I couldn’t walk, because I shook to hard. When they stopped my Neurontin, my jaw locked shut. Finally they gave into rheumatology’s suggestion that we throw steroids at it, just in case it was related to an autoimmune issue. They’d done spinal taps, MRI’s, I’d coded, it was time to just do something.

Three days on IV steroids, and I was discharged with a walker.

I tried to point out that it was a classic acute NB flare, but because my spinal tap had been normal, as had what they could see on the MRI before I had my seizure in the machine, they refused to diagnose me.

As the steroids tapered down, the instability, and coordination issues returned. That was when I went to NYU, started Remicade, and then promptly ended up on Cytoxan.

Now I’m ready for my next round of IVIG. I notice the disappearance of the non-permanent neurological issues. I’ll always have ataxia, but the really obvious manifestations don’t come during the first 3 weeks of IVIG. The headaches are gone. Knock on wood but I haven’t had a seizure since starting IVIG, either. My hyperactive reflexes are permanent, but they appear to be limited to my legs right now, and mostly my left leg which makes sense. (My right leg is somewhat dumb from the back injury.)

I’m just happy to start over with a rheumatologist who is ready to fight as hard as I am. I loved my old rheumy, but her refusal to consider that I may have issues that were NB, because I missed the imaging to support it, was upsetting.

Why should I be forced to get sicker, when I’m clearly responding to treatment, and have all the symptoms of the disease?

Advocate for yourselves. Fight hard. The wanted to put me in a nursing home after I was discharged from the hospital. I had friends help me so I could get to NYU, and get options I wouldn’t otherwise have. You are stronger than you know.

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Neurobehcets – When it Doesn’t Make Sense, but Does

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

Switching Rheumatologists…Terrifying?

When my rheumatologist went on maternity leave, I had made the assumption that my care would continue as planned, with her nurse practitioner coordinating my care. If you’ve read my blog, you know that this isn’t what happened. In a nutshell, the NP suggested I seek treatment elsewhere, then presented me with a treatment plan that was completely different from the one my rheumatologist and I had decided on. IVIG was working…well…why would I go back to oral medications and a lifetime of steroids?

I saw my rheumatologist when she returned from maternity leave, and despite having made her aware of my discomfort with the NP, she chose to bring the NP in with me while going over how I’d been feeling. I held out hope that she would still take charge, but when I went to make my follow up appointment, I was told I’d be seeing the NP, as my doctor will be cutting back office hours.

At this point I immediately wanted to cry, but I also saw it as an opportunity. I’d done six months of Cytoxan, without a port, on top of prior rounds of other IV drugs. Despite all of this, she still wasn’t on board with the port discussion. She also really didn’t want to interface with my specialists as much as I’d have liked, particularly GI and neurology, as those are the main areas my Behcet’s attacks. Perhaps it was time to just find a new rheumatologist.

My old rheumatology center, where I was originally diagnosed years ago, happens to be two miles from my new apartment. A great friend (we call each other sisters) suggested that I look into getting back into that clinic. It was a high volume place with sort of an assembly line feel, or it used to be, but she assured me it wasn’t that way anymore. Even if they did run patients through quickly, I’ve come to a point in my treatment where that’s what I need. We have found what works, we interface with NYU if need be…my case is my case. So much hasn’t worked that the remaining options are pretty basic.

The doctor was easily in his eighties. He lacked bedside manner, but that stopped mattering to me a lot time ago. I want knowledge, no nonsense, and treatment plans followed. We chatted, he confirmed the obvious, I have Behcet’s, he went over my prior notes (since I’d been at that practice previously) and did a cursory exam. I was excited when there was no hyperactive reflexes on my upper extremities, then annoyed when my legs went nuts. My left leg in particular made sure to let me know for quite some time that it was overreactive.

As if it were the simplest thing in the world, the doctor stated, “please put neurological behcet’s in the diagnosis field as well.”

Boom. It was something we’ve known for years. Control the Behcet’s and we control my neurological issues. Since my MRI scans and spinal taps, are all normal, no doctor has ever been willing to give me anything more than “they’re likely connected.” It has been infuriating. When doctors look at you like you’re making things up, but things you can’t control, like your reflexes, just go nuts. It’s a scary diagnosis, but it’s one that makes sense. It also further cements that IVIG is the right treatment for me. When I mentioned that the other doctor had wanted to stop IVIG after six months, and go back to oral chemotherapy and steroids, he simply stated, “No. Why do what doesn’t work?” I swear, I am not a hugger, but I wanted to hug that man so hard.

As patients we often want the friendly doctor. Sure, bedside manner is important…but make sure that your doctor is also willing to fight for you, and get to the damn point. It took several months before my prior doctor and her nurse practitioner basically admitted that they didn’t want the hassle of my case anymore….and I get it. When I schedule an appointment with a new doctor, I tell them up front that I have Behcet’s. For a while I would just put it on my new patient paperwork…but then I was waiting several months to see a specialist, only to have them turn me down due to their lack of knowledge on the subject. They could have taken the time to educate themselves, but they either weren’t willing to, or simply wanted me to have a physician who was experienced.

Neuro-Behcet’s…what does it even mean? For me it’s a weird sort of middle ground. I have symptoms that sort of dance around the various dedicated forms, but it would seem that my ANS is what is impacted. It makes sense because of the hyper-reflexia, and my glorious bouts of sinus tachycardia. Don’t forget my body’s inability to handle heat. I do get scared sometimes. My seizures change my heart rate, body temperature, and breathing. Finding out afterwards that my oxygen saturation gets so low, is a scary thing. Luckily I haven’t had one since starting IVIG.

There isn’t a miracle cure for me, and it’s okay. There are things people need to understand about my health. Remission may happen, but we can’t plan for it. This isn’t a, “when you’re in remission, we can,” type of scenario. This is planning for fluids to handle my chronic dehydration. It’s finding supplements to make up for what I simply can’t eat. It’s IVIG to prevent further damage to my central nervous system. I will always have ataxia, and my career plans have changed because of it. Some days I think that’s fine, but other days I want to scream. I worked so hard, and for what?

I worked hard to live. My successes don’t mean less if I can’t reliably use the skills I learned.

Today was today. Tomorrow we will see what comes.

Switching Rheumatologists…Terrifying?

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

Chronic Idiopathic Urticaria (the Fancy Way to Say Your Body Sucks) and Confusion

Today I had my follow-up appointment with my allergist, and after a whole lot of stress, I finally got to the office and now I’m just confused. (The stress was related to taking a car to the wrong address, and having to pay to go across town. I spent over $100 today on transportation alone…yet I can’t use medical transport or medical costs, to apply for public assistance. Yeah, I got denied, because my bank account has too much money in it…but that money is for insurance, and it isn’t even enough yet!) Sorry…side rant over!

The doctor went over my labs, and everything was in the normal range. I fought hard to get it into the normal range, so I was happy that things looked well. (I also did the blood test shortly after getting my IV treatments, but whatever.) My potassium and iron were on the low side of normal, but that’s good for me as I can sometimes dip, especially with the potassium. He diagnosed me with chronic idiopathic urticaria, and explained that the things that sometimes trigger my reactions, are common triggers for CIU. Things like heat, stress, and exercise, have all caused me to break out in hives. The less clear issue, for me, is this annoying swelling of my lips.

He stated that I don’t have hereditary angioedema, which is good, as that condition can be fatal. The thing I don’t fully understand, is how I could have lip swelling, without having angioedema at all. From what he told me, the swelling is related to the reaction that causes hives, but isn’t severe enough to cause a reaction in my airway. My lips do swell, but not out of control. Basically, they’re an extension of the hives, just like the flushing is.

I’m not totally sure how I feel about the diagnosis, though I do know it’s (for the most part) correct. I am a bit worried about the swelling of the lips, but I do trust him as a doctor. I also haven’t had any real issues in terms of my airway, minus one time when I was really coughing up a storm. Of course, I have cough variant asthma, so that’s not totally out of the ordinary for me.

Tomorrow, though, I’m getting my port placed, and there is definitely some fear. With my lips still puffy, I worry that I could react to something they give me, and be unable to handle it. I know they use medications that I’m not allergic to, or at least that I haven’t reacted to before, but it’s still a terrifying procedure to me. I was so excited for so long about getting the damn thing, eventually, but now the day is literally almost here, and I’m terrified.

I’m also kind of worried that I could have some sort of angioedema. The blood work was normal, and I keep reminding myself of that, but when you’re lips are tingling all the time, you tend to get a bit paranoid. Interventional radiology is literally going to be putting a catheter, into my chest, down near my heart. I really would love not to have some sort of hive/swelling issue during the procedure.

With new diagnoses comes stress for me. I usually have a period of knowing, or at least suspecting, what is going on, but with CIU, it was just quickly diagnosed. It’s so minor in the scheme of everything, that I struggle to process it. My doctor made it clear that, in the list of things it could be, this was the best option. It isn’t dangerous, it’s just annoying, and it’s definitely manageable. Maybe that’s the part I can’t fully understand. It’s manageable. For the first time in a long time, there is something wrong, that can easily be handled. Even better? It’s one antihistamine, maybe two, and it’ll help me fall asleep…an issue I’ve had for what seems like forever.

Chronic Idiopathic Urticaria (the Fancy Way to Say Your Body Sucks) and Confusion

Is It All For the Best

This past week was a bit of chaos but it was all much needed chaos. I think it’s easy with chronic illness, to fall into a rut. The very thought of having to call the various specialists I needed to call, and to actually fight for myself, was so daunting for so long. Prior to starting IVIG, I was steadily getting worse, an I literally didn’t have the energy to fight for treatment. Sure, I called to see if the IVIG had been approved, but I let all my there specialists slide. I didn’t have time to straighten out GI because there was an issue with my referral. (It all involved testing I technically couldn’t have anyhow.) I knew I’d given up, but I was just so exasperated by the horrible nurse practitioner that I didn’t have the energy to potentially fight other doctors, too. I was determined that I’d call other specialists once I talked with MY USUAL doctor. Basically I was booked with the NP, but was told I’d be seeing my doctor shortly after to touch base. My doctor knew that I was not okay with the NP, and that I would be refusing to see her again, as I did not feel she was the best fit for my case.

So the NP comes in, we have our little pow wow…at which point I notice a few things. First and foremost, she’s taking time to actually see how I’m doing. She doesn’t do an exam or anything, but we chat about my stomach, my neurological issues, and I make it clear that IVIG is working on lower GI ulcerations, my joint pain, all my neurological issues, and my skin problems. The one thing that it hasn’t helped, and that there was never an expectation of it helping, is my stomach. Sure, it could reduce the gastritis if part of that was due to ulcers, but likely the gastroparesis itself, also causes an acidic build up, leading to gastritis. The NP also asked if I’ve been getting my fluids and vitamins twice a week.

I told this woman one of the biggest issues regarding port access, was that nutrition isn’t sure they could place a reliable PICC due to my vein size. Lack of a line, means that no, I cannot go twice per week for infusions, while being able to preserve the vein for infusions! 

Shortly after she leave the room, my normal doctor enters, and for a blissful moment I look at her, she says how good I look, I’m thinking we’re all good…and then the NP comes in, too. They’re talking about going for two more months, as though I’m not even in the room. She ignored my concerns over the lack of knowledge the NP had, and I was dismissed with two more months of IVIG. The only real benefit to the appointment was that I learned the NP had made a mistake, and failed to phone in post infusion hydration. No IV fluids? Of course I was so miserably sick!

The visit with my primary care doctor went much better. I honestly love my PCM because he’s a great combination of modern medicine, and a light touch. He helps fix my seriously out of line back and hips, but also does things like ac tally listen to my concerns, examine my vasculature, and realize that wanting a port isn’t about wanting one, instead, it’s about needing one. There are literally drugs I would have to be given via my jugular vein. There are no other options. I get my port on the 11th, and I’m nervous. I don’t know how people will see me.

Is It All For the Best