Changing Your Expectations and Being Okay with It

I have had to change so many of my expectations over the last few years, and you would think it would get less painful each time…but it doesn’t. When my ex-husband and I separated, it was a relief. It wasn’t a good marriage, despite being a long marriage, and the freedom from the constant verbal and emotional tirades was beyond amazing. My health had momentarily improved, leading me to believe that I would be so much better physically, because I had freed myself emotionally. It was partially true. My C-PTSD symptoms did decrease, to the point where my medications could be removed, but my Behcet’s didn’t get the notice.

Denial was my first mistake. I refused to accept that the symptoms I was having were Behcet’s related. Wasn’t I always uncoordinated? Didn’t I always have stomach issues? Finances were a mess because I’d blown my knee out, so the stress was of course causing me some physical distress. I made so many excuses for so many obvious signs of flaring, that I was eventually sitting in the medical marijuana office, weighing in at 120 pounds, all 5’10” of me. I got my medical license to smoke, and for the first time ever, tried marijuana. At that point I was struggling to keep down water.

My second mistake was over optimism. Let me explain this further. Being optimistic is wonderful. You need to be positive to stay on track and fight your chronic illnesses. Being overly optimistic, though, prevents you from planning realistically. I kept telling myself every treatment change would work. When it didn’t, I just kept pushing forward. I pushed my body to the limit because I was still in denial. I had a boss prior to getting sicker, who was into positive thinking so seriously, that we literally couldn’t express any negative feelings. I clung to the idea even after leaving the job.

The final mistake was combining mistakes one and two, with lying. I lied to my family. I lied to my friends. I told people I was fine, and when they saw me, they were floored by how not fine I was. By the point I was going to NYU, where they would recommend Remicade and if that didn’t work, Cytoxan, I had been hospitalized for over a week, and was barely able to walk with a walker.

Denial, overly optimistic thinking, and lying to yourself and others, is not going to help you.

I still believe there will be a day when my illness doesn’t impact me day to day, because I’ll have treatments and tools at my disposal, but I am still coming to terms with that reality. Some days I will need my wheelchair. I will likely need IVIG regularly, for quite some time, if not indefinitely. Remission is out of the question, but given how aggressive my case has been, it isn’t likely.

And that’s okay.

That may sound like over optimism again, but it isn’t. I will adjust my life as needed, and with time, I will be able to find things that I can enjoy and do with whatever my body is capable of. I don’t know if anyone will ever be able to love me enough to live with me and commit to me, and while the thought of never settling down and actually living with someone hurts, I do know that it’s a possibility. I also know that there are people out there with chronic illnesses who have found partners, so it isn’t impossible. The first step, though, is accepting myself, and my body, for what it is.

My schooling changed. My potential career paths changed. It hurts. I wanted to be a clinical laboratory scientist more than anything, and I may not be able to ever pursue that path because of my ataxia. What I have found, though, is clinical study associate positions, and they’re actually really interesting. To be honest, I should have gotten my MPH (Master’s of Public Health), but I wasn’t as sick when I committed to the forensic program. Ultimately I can still get certificates for clinical study administration, and because of my undergraduate and different graduate degree, I could make a case that I would be an excellent advisor. I’ve literally studied the lab piece of things, and the investigative side of forensics, I am the perfect person to put together official studies that pair the work that is seen, with the behind the scenes work.

I have literally discovered a career I never knew existed, and it’s in demand where I live. I can also do it in a wheelchair, and even handle some administrative tasks from home.

Currently I’m not in a position to work, but I want to be working someday, and this career field gives me hope. Regardless I love the idea. I could also look into PhD programs with my undergraduate and graduate school, because they have agreements with certain degree programs, where they pay for your PhD if you give them 5 years of your time as a professor. I would actually enjoy teaching college students, and the flexibility of the potential online classes is amazing. Even if I had to do in person instruction, the ability to do it in a wheelchair also makes it a viable option.

Mostly it’s about recognizing that I even have options.

You may not be doing what you thought you’d be doing, but very few people in their 30’s are where they thought they’d be in their teens or even early 20’s. The friends I think that have it all, don’t really all have it all. I come from a small town and most of my friends have gotten married and had kids, but there are others like myself, who got married young and then got divorced. I’m glad I didn’t have kids with my ex-husband, because we would never have been able to peacefully coparent. I also wouldn’t be able to focus on getting myself well, if I had children to look after.

I am not where I want to be, but I am still here, and I still have the opportunity to move in a variety of directions. I just need to be open to the options that I have.

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Changing Your Expectations and Being Okay with It

Happy Holidays, and Gross Poo Talk

So this year I wasn’t able to fly back to see family, which was definitely a bummer because I haven’t been able to the last two years either. With the illnesses going around, and my general poor health, flying just isn’t an option right now. While my seizure drugs are currently doing a good job, flying is a high stress situation for me. That means I don’t sleep well prior to flying, and I also tend to get nauseas so I don’t eat much either. Anyhow, an amazing friend and his family offered to have me up with them on Christmas day. I ended up staying a couple nights before heading back down to San Diego. It was really amazing, minus my body being a pain in the rear.

Currently the GI issues are the biggest thing. I’ve reached a state of low nutrient intake, and low calorie intake. This has amplified the brain fog I was already dealing with courtesy of the neurological issues. My friend and his family were amazing. They had foods on hand that I could eat, including specially mate potato pancakes without onion so I wouldn’t hurt my stomach eating them. I felt kind of bad because I only ate two of them. I also only had 4 pieces of the bread they’d bought for me, too.

The issue is that I have a partial bowel obstruction. I’ve had them before, and sometimes I can clear them on my own, and other times I have to go into the ER for some really horrible assistance. I have no desire to have the doctors give me high strength laxatives, and enemas. I still have 2 months before GI will see me, and I have to have a bunch of testing between now and then that they want me to complete.

It’s like the doctors don’t realize that there is nothing that needs to be tested for. We know I have gastroparesis based on a test done several years a go. Yes the testing was done poorly, and I was barely over the line, but what does redoing the test prove? Also, the only reason they want the abdominal MRI is because I have stenosis of the celiac artery. I get that it’s super rare to have it the way that I have it, but we also know that this kind of thing can happen with Behcet’s patients. While I go through all of the scheduling and testing, we’re wasting time. I’m struggling, losing weight, and losing focus.

I went from super focused in classes, with high marks, to a struggling student who can’t stay focused, and who is barely getting by.

This will be a short post just because I can’t focus, and may need a nap, haha. I’m still putting my hopes into IVIG. I want it to work, and I want to function again.

Happy Holidays, and Gross Poo Talk

First Round of IV Vitamins, and the Unemployment/Disability Situation

Yesterday, on the 23rd, I got my first infusion of fluids vitamins, and amino acids. It wasn’t pleasant, but mostly because I was still so sick going into the appointment. Basically I’m still having bleeding issues, most likely from my colon, and lower intestines. I’m also having a lot of nausea courtesy of the gastroparesis. I find myself in this horrible situation where, if my stomach and upper intestines empty, they hit the lower intestines where the ulcerations are. So the nausea fades momentarily, only to return as the pain of the food and drink moving through me hits the ulcers. The doctors are fairly sure some of the ulcers were deep, and created blood clot like scabs that are coming off when I feel like I have to go to the bathroom. It’s super fun…

Anyhow, I pulled myself up off the bathroom floor (literally) and went in for the infusion. I was pleasantly surprised when the nurse hit a vein on the first try. (I had forced myself to drink and keep down liquids, though it had left me violently nauseated.) She warned me that the infusion would taste funny, like a Flintstone vitamin. Turns out it tasted exactly like one, but not the fun fruity part…the gross after taste part. This would have been manageable had I brought mints or something, but I hadn’t. It also would have been manageable if I weren’t already trying to avoid throwing up. Then there was the woman who seemed determined to talk to me.

I am pale, obviously in pain, and she just kept talking…

I’m not sure what we talked about. I grunted responses periodically, but spent most of the time checking out her adorable dog. Then something fun happened. About halfway through the bag I thought I was dying. I felt hot flashes, the nausea peaked, and I was pretty convinced I was going to faint or have a seizure. Then, a little while later, it all went away. I told myself it was just the Zofran I had taken prior to the infusion…but I kept feeling less horrendous. Now, don’t get me wrong, the damn thing still tasted awful, but I didn’t feel as awful. 3/4 of the way through the infusion, I was actually sitting up in the chair instead of half curled over. As it finished I had to admit, I felt a lot better, just from the fluids. The vitamins were much needed, but I am sure they haven’t done much just yet. The nurses and nutritionist had all said it would take several regular infusions before I felt a lasting benefit from the vitamins and amino acids. As I’m getting up to leave, talkative lady addresses me and the nurse.

“You look less dead.” Then to the nurse, “Doesn’t she look a lot less dead?”

I mean I’d rather look totally alive, but I’ll take less dead I suppose. My stomach still hasn’t been doing well, but that’s just the nature of the situation. My upper GI doesn’t want to move at all, while the lower GI is a mess of ulcerations and blood. Happy holidays I suppose.

Hopefully I can get an update on my wheelchair after the holiday. I’m bummed that I’ll have to start paying copayments and whatnot, given my insurance year will begin again, but I’m hoping I won’t have to pay it all at once with the wheelchair. That would definitely require me to sell everything I own. I’m also excited to start IVIG. I’m crossing my fingers for some good news regarding my disability as well.

For a long time I was opposed to the idea of disability. I want to work. Not working leaves me unfulfilled. It isn’t even about finances, though I’m definitely struggling financially. Working has always given me a sense of pride and purpose. Even the smallest job made me feel like I was contributing in some way. Without working I feel sort of useless. I know I couldn’t work the way things are right now. As much as I may want to work, I just don’t know day to day how I’ll feel. Plus there are the medical treatments. We’re talking about IV infusions 2x per week, if insurance will cover it, then IVIG which will be given over a period of two days. From what I’ve read IVIG is done every 4-6 weeks. If it lines up with IV nutrition appointments, I could be spending 4 out of 5 days in medical offices one week per month. I’d still be spending two days per week in medical offices anyhow. Once we’re able, we’ll wean me to an IV per week, but ultimately we can’t go lower than that since I really need the fluids.

This is the thing people don’t seem to grasp about disability, and those of us who are chronically ill. We fight hard to get to a baseline that is somewhat close to that of a healthy person. Most of us won’t ever feel as healthy as a healthy person, but we can fight hard to become functional enough to basically pass as healthy. Getting to that point takes a lot of effort and time though. In my instance we’re talking several IV treatments, a ton of oral medications, and carefully orchestrated drinks and snacks. Even with all of that, I could wake up and feel miserable. If you look at my IV schedule alone, it become a scheduling nightmare. Toss in the fact my body doesn’t operate well in the mornings, and that I could randomly have a few bad days without warning, and you get someone who really doesn’t have the ability to work right now.

I am not defined by my illness, however, I am limited by it. For a long time I lied to myself, and swore that Behcet’s and the things it has caused like gastroparesis and autonomic neuropathy, would never limit me. I was determined to live the life I wanted, despite the symptoms. As I pushed myself, I got sicker and sicker. Then denial kicked in. I told myself that I was in a flare, and that once the flare was over, I could get back to living a normal life. Denial isn’t helpful. I hit a point where I had to acknowledge that some of the things I wanted to do, I couldn’t do, because of my chronic illnesses, and that’s okay.

Yes, you read that right folks, it’s okay to accept that your disease limits you…as long as you don’t let it define the entirety of your being.

I am chronically ill. I may have to use my wheelchair at times. I cannot work. My diet is an absolute wreck, and even when I do follow the doctor’s advice, I can’t always succeed. The ER team knows me. Professors have to allow me extra time should I require it. These are all facts of life for me. I accept it, and I pivot because of it.

Find something else that you love, and know that limitations are not forever, but even the ones that do stick around don’t change who you are as a person. 

Life is what it is, and sometimes we can’t wrap our heads around having to change our plans, but we also can find ourselves trying something new that we hadn’t even thought of before. We find new passions, new paths, and we go with it.

So go with it. 

First Round of IV Vitamins, and the Unemployment/Disability Situation

Ouch

Gastroparesis is still bad. I also lost a clot that had apparently formed somewhere in my lower GI, leading to a ton of GI bleeding. If I had to guess form the blood, the clots, and the location of the stabbing pains, it’s probably my colon. Again.

Let’s cross our spoonie fingers I get some good news tomorrow at rheumatology, so I can post a more upbeat, and long, blog.

Ouch

Operation Relocation?

**Disclaimer: I made a gastroparesis blunder today and overestimated the capacity of my system. Therefore, due to extreme nausea, this blog is being written under the influence of medicinal marijuana. I doubt I’ll edit it before posting. Hopefully my point is made.**

One of the harder parts about being chronically ill, is the financial strain. Even with good insurance, the medical bills pile up. Maybe your main plan has a low catastrophic cap, but what about vision and dental? In my case there is also the reality that I’m the only one that is capable of bringing money into the home. Yes, I get alimony, but along with the finalization of my divorce, comes the reality that I’ll have to pay to keep insurance, and that excludes vision and dental.

Inhale.

The reality of my current state is this…working isn’t possible. Lately walking the dog around the block has been a victory. That victory is short lived because walking the dog wasn’t the only task for the day, and now I’m exhausted. I’ve been waiting on disability, but could still have to wait over a year for my court date. What is a person supposed to do when they’re disabled, but can’t get disability?

I have a credit card that was maxed out between my knee surgery, and chemo. I’ve reached the very end of the road when it comes to pretending you’ve got everything under control.

People can tell I’m faking.

Relocation has become a hot topic, because where I currently live (San Diego) has a high cost of living. I, personally, don’t feel like I have a ton of other options. I have a large service dog, a small retired service dog, and no income aside from alimony. There is nothing in San Diego I can afford, and not many roommates are willing to tolerate the dogs. Family has implored me to move back east, but for a variety of reasons, including all that snow, I’m not sure that would be a responsible choice.

Recently I was offered the chance to live in my aunt’s condo, rent free, in Florida, from May through November. My first thought surrounded the word “free,” but the following thoughts were full of pros and cons. I have made a list, on my whiteboard, and they are exactly even as of right now. Medically there is the fact I’d have to find all new doctors, comfortable with Behcet’s, and then find new ones again because I’d only be there for six months…

Okay, enough about me.

I’m not the only person who faces financial stress because they’re chronically ill. How many homeless people have you met with severe mental or physical disabilities? They didn’t just decide to live outside one day. Society needs to do a better job of helping those who cannot reliably work. I could get a job tomorrow, but I would lose it by next week. I don’t know what days I can eat and what days I can’t. I don’t know when I’ll have severe pain, or nausea, and be unable to make it into work. This is something most of us “sick” folks deal with.

My friend was lucky, she worked for a grocery chain that let her work when she was well, and accepted her absences when she was gone. She didn’t make much, but it made her feel good to be working. When you’re not working, it can become depressing, You want to be contributing. So why don’t we have something for the chronically ill that allows them to work when they’re able, and receive disability benefits regardless?

The assumption is that tons of people abuse the system, and file for disability or other benefits because they’re lazy. Maybe some do…but the process of being approved for disability is beyond broken. I have friends who have been in the system for 3-4 years, while they have bones literally fusing their spines and ribcages. This friend would still work on good days, because she likes feeling fulfilled. That doesn’t mean she isn’t disabled.

Think about it like this: you have a system designed to provide financial assistance to people who are unable to work do to a disability. The reality is that some of those people would work when they felt physically able, but the amount of work they would be able to do would never be enough to provide for them financially. So, instead of working, they wait for their disability benefits. The limited funds must be carefully regulated, so they wait a long time. What if the government realized that those of us who cannot work enough to financially provide for ourselves or our families, could still work in some capacity? Couldn’t we have the chance to work within the disability system itself?

I am great at office work. I am amazing when it comes to organization and filing. You need a friendly face to greet guest at reception? That person would be me. It just may only be me for 2-4 hours at a time. It also may only be me a day or so per week, with gaps in between. I want to contribute, I want to be part of something bigger and better than sitting at home, or at the doctors office. I think most of us who are chronically ill, want to still have a purpose that we pursue.

Some have been lucky to have family and friends to stay with during their financially challenging times, and I’m not saying this as a slight to my friends or family, it’s just something worth noting. There are people who, for whatever reason, rely on themselves during the challenging times, and it’s definitely an anxious thing.

Social programs need to step it up, because they could be so much more, and they could help so many more people. In the meantime I’ll just be figuring out whether it’s time to relocate. It isn’t an easy decision, sick or not, and it’s something that is really weighing on my mind.

Operation Relocation?

I need to get that stuff, you know, it comes in sliced, in packages, you use it for toast?

That is a literal question I asked someone because I couldn’t remember the word “bread”. Brain fog isn’t anything new for me, but the increase in frequency, and severity of the lapses, has started to concern me. My professor thinks I’m slacking because I had things in at the last second, even when it’s something I already had an extension for. I reassured her that I wasn’t procrastinating. For me to actually retain even a few bits of the material, I need to take my time working on the subject matter. If I miss a lecture, which I have, I don’t just play it and write up a generalized summary to meet the requirements. I listen to a few minutes, pause to take notes, then continue on with the lecture.

Notes on a  two hour lecture typically takes me 6-8 hours.

I need those notes for tests, only in this class, test times don’t really allow for you to dig stuff up in notes or on the books. (I take classes online since I can’t make it to campus anymore.) Another reason for taking accurate notes, is that I love the material. It was different in classes I found incredibly boring. It was material I really wouldn’t use again, and I had no interest. In this class I am interested, it’s just also complex, and contains a lot of minute details. If I can’t remember that bread is what you use to make toast, how am I supposed to grasp the ridge counting system and pattern equations you use to fill out a fingerprint card? (Important side note…I had to take a few minutes to remember the word equation. Sometimes I’ll get annoyed and just look up key words I know related to the word I’m forgetting, but this time I’m proud I figured it out eventually.)

My brain and body are screaming at me to just sleep. I’ve gone from embarrassment of needing a wheelchair, to impatience regarding the length of time it will take to get one. I’m still worried I’ll end up single forever, but I also understand that right now the key is staying alive and protecting my brain from my body’s overly active and very confused immune system.

Most of us who are chronically ill, have had someone judge us as lazy, or we’ve been labeled as procrastinators. We’ve seen the eye rolls, or lost friends because we ran late to often, or cancelled plans.

If I have to be somewhere at 6pm, I start getting ready around 3pm, because I know I’ll need breaks. I also go to bed early, and sleep in, the night before.  If I’m sore, I shower more than once, and take baths to get my muscles as relaxed as possible. I longingly will eye my high heeled shoes, before grabbing my sensible flats. Picking an outfit depends on how long the event will be, and how swollen my various body parts are. Since most of my swelling right now is in my lower abdomen, I have to plan for how that looks. Shape wear?  No way. The pain that results from attempting to contain a bulge that is actually my intestines, colon, ulcers, and of course stool, is beyond explanation.

Last night I saw a movie. It was amazing to go out, but the process began the day before. I tried to be cautious about what I ate, as I usually am, but because I’d eaten a bit more than my intestines could handle, I had a very obvious swelling of my lower abdomen. No worries, we can just kind of layer two tops and hope that it isn’t as noticeable. Makeup? Yeah, that’s fun when you’re arms and legs are weak. I need to get a full length mirror so I can sit and do it easier. Right now I have a rigged up way of doing it that allows me to sit in my bathroom sink so I can use the medicine cabinet mirror to do my makeup.

No, I am not joking.

Forget cleaning up any mess that was made while doing my makeup and hair, if I clean it up, I’ll be too tired, and I was already running 15 minutes late. Now the whole trying to get to my friends house. He’s only like a 5-10 minute walk away, and the weather is nice, but I know that the walk would drain me. It used to be something I wouldn’t think twice about. My part of the city has a free ride electric car that goes around, but alas, there were no available drivers. Plan B was a Lyft Line, but the wait was 10+ minutes, and by this point I am so tired, I really need to take some Zofran. Shift to a regular Lyft which costs more, but doesn’t involve a wait.

So I get in the Lyft, and I’m regretting my large purse, but whatever, I can unload things once I get to his place. As much as  I want to see the movie, I’m considering just going back inside and going to bed, and it’s only like 4pm.

This is where things get really important: I didn’t give up.

I relaxed a bit at his place, he got food (I watched him eat it because that’s what I do now haha), and he was nice and got us a Lyft to the movie theater. Usually it would have been a walk, but I wanted to enjoy the movie. The mall had several flights of stairs that I needed to climb to get up to the theater. The elevator on the side we were on was broken. (Of course…) So we go up stairs, stairs I’ve climbed dozens of times. My legs hurt, parts go numb, I’m starting to wonder if I should just sit down, but I don’t want to make a scene. I start moving slower and slower, but eventually we get to the top. I’m in pain, but we’re there. After enjoying the movie, I remind myself that I need to make it back to see Star Wars, but that perhaps I’ll go alone so I can use the stairs or my walker.

After the movie I did a really dumb thing. We were walking around looking for a specific shop, but we couldn’t find it. We walked and walked and eventually we were almost back at his apartment. So he asked if I was cool with just finishing the walk and I said I was.

But I wasn’t.

Today, I am paying a price. Brain fog is extremely intense, the urge to just keep sleeping is preventing me from doing a decent job on my homework. Have you ever worked out really hard, and you have really sore muscles the next day, where even lifting your spoon is painful? That’s where I’m at. I was having muscle and joint pain before, but pushing myself beyond my limits was just plain stupid.

Lesson: regardless of what you think other people with think of you for using assistive devices, or refusing to walk when the distance is considered walkable, listen to your logical brain. 

I could go to bed right now, and it’s only 5:40pm. I have homework to do, so I can’t just sleep. I could take a bath to ease the pain, but eventually I’ll have to get out. Plus the hot water is a dangerous scenario with my autonomic nervous system being such a bastard lately. Plan is to take a lot of homework breaks, think as much as I can about the homework topics, and if I really need to sleep, then I will let my body sleep.

I need to get that stuff, you know, it comes in sliced, in packages, you use it for toast?

To Port or Not to Port…and how to ask the question!

During Rituxan, my nurses had noted that my veins were incredibly difficult to work with. This wan’t news to me. Every time I would go in for blood work, it would take multiple sticks before they accessed a vein. The only veins that work for me, are the veins in my hand. There are two exceptions, but neither is practical for every procedure or blood draw. The first exception is whatever sorcery the EMT’s and paramedics use. The only thing I can think of is that while I’m unconscious, or actively seizing, my veins become more prominent due to muscle contractions, and an elevated heart rate and blood pressure. They usually have to stick me at least four times, though, so it isn’t a total win even though they can get that one pesky arm vein. The second exception was what happened during this past hospital stay. After one nurse missed twice, and a second missed once, they asked for a doctor to help. The  doctor missed twice with an ultrasound machine as guidance. This was extra fun because of how deep the needle was during the process. I’d also been given nausea pills that hadn’t really worked, and no pain medications or fluids because, duh, no IV. They were drawing up IM medications when the special IV team arrived. They used another ultrasound machine, and even they struggled, but managed to get it in to a deep vein in my forearm. Luckily they used lidocaine that time, so it didn’t hurt nearly as much.

When I told the doctor that we were in the process of beginning IVIG, she said that it would be a good idea to get a port. I agreed with her, but admitted I was worried. Port maintenance isn’t a huge pain, but I do have vasculitis. I guess my fear is that the existence of a port, potentially increases my risk of blood clotting. (Granted you use heparin to prevent clots from forming, but still, terrifying.) I’m also afraid to ask my doctor.

If I had a port I’d have the option of administering IV Zofran and Phenergan, which would be an enormous help. Right now I’m using medical marijuana way more than I want to be using it. Having to use it multiple times, per day, just to function, is no way to live. I process nausea drugs quickly, so having a fall back option, like marijuana, is the only way I can be sure to avoid vomiting, and is the only way I’m able to consume anything at all. We could also talk with GI about home IV fluids, including banana bags to supplement all the vitamins and whatnot that I’m not getting due to my dietary restrictions.

Previously my doctor made it clear she doesn’t order ports for her patients, as most issues are temporary. I went through chemo, without a port, and it was hell on me and the nurses. Multiple nurses stated multiple times that I should have had a port placed. I was also not allowed to schedule any of the last spots of the day, as it took a good 20-30 minutes each time to find a useable vein. They couldn’t use hand veins, so we always used this same vein on the side of my thumb. It got really aggravated by the end of the six months, but could still be used. As an IV placement, it sucks though. It’s blown several times, and curves over 45 degrees.

I’m just anxious about asking. I’m also anxious about people looking at me weirdly. It’s easier to hide than a wheelchair, obviously, but it’ll still be there, and people may still ask. What will people I date think? How will I even be able to date? I could show up to most dates without a wheelchair, unless they wanted to go for a stroll afterwards. What happens when the time comes for them to see more of me, and this lump is right there by my collar bone?

It’s all hypothetical, of course, and I doubt my doctor will even okay the port…but I anticipate it is going to be necessary if and when we do IVIG. I just don’t have a good vein for it, and if we’re going to be doing it every 4-6 weeks, and if there is blood work like I’ve been getting, it’s time. Every ER doctor and nurse, has wondered why I don’t have a port. I’ve never had a valid answer other than, my doctor doesn’t think I need one.

I know myself. I’ll be anxious if it happens, and anxious if it doesn’t. If I do get one, I’ll be self conscious for a while, then snap out of it. The same goes for the chair. Maybe I wanted one with normal wheels instead of a power chair, but anything is better than my current situation, and I can always make it my own, make it unique.

Also, I’m 1/4 of the way to my goal on You Caring. I can’t wait to reach my goal, keep insurance, and kick some major Behcet’s booty!

To Port or Not to Port…and how to ask the question!