Governmental Nonsense and Way Too Many Tears

Getting affordable insurance is still insanely hard if you’re chronically ill and unable to work. Part of the problem is that getting disability is hard. If you have income, even if that income isn’t from working, and even if it doesn’t cover all of your bills, you’re sort of shuffled to the back of the line (or so it feels). Disability would qualify me for MediCal which is what I’m trying to get, but I’m $200 over the limit, and that’s enough for them. It doesn’t matter that I can’t pay my other bills, I’m over the limit.

They actually just suggested I decrease my alimony so that I would qualify. Are you kidding me? I’ve already expressed the reality that if my roommate didn’t cover so many of my bills, I’d be homeless already. 

I swallowed my pride and got the information for a charity that helps, and I’m hoping they can provide some help so I can keep insurance for a few more months at the very least.  I also need to talk to my ex at some point, and inform him that I’m changing banks. I emailed him but I don’t know which email he actually uses to be honest. (He has several from when he was cheating, that he still has activated, so it’s impossible to really know what is going on with that. I suppose I’ll have to text him, too.

Funny how part of the divorce agreement was me making sure he knew where I was at all times (phone, email, address), but I don’t get any of the same luxuries.

It’s odd being sick. I took an unexpected 3+ hour nap after trying to write this earlier, because I’d sobbed myself into incoherence. There is a hopelessness once you’re in the disability system. You’re lied to by the ease with which temporary disability can be obtained. When you realize your disability isn’t temporary, and apply for permanent disability, you’re struck with the truth. It takes forever, and the details don’t often make sense.

Now the best way to get MediCal, is to be officially disabled, but hey, fun fact, that process takes, on average FOUR years.

You want less homeless folks San Diego? Help get them enrolled in disability, of some sort, because many have mental health issues or physical issues that, if fixed, would allow them to work. Additionally, let’s get more drug rehabilitation facilities for those who want or need them, because that will also help. And build some affordable housing!

These programs that exist to help, they want you making less than around $1300 a month, which is a glorious theory, but completely unreasonable for San Diego. Now it’s 2am and I’m debating how peaceful my sleep will honestly be, given all the crying I did today (and that unbelievably ridiculous nap. People were actually worried because I just crashed so hard. I think I may have swapped my indica heavy and sativa heavy pens, because OOF.

And before people judge, medical marijuana is literally the only thing that stops the vomiting sometimes. If we find out my GI transit time is slow, but not so slow it can’t be managed, there is a chance I’ll be given IV access for nausea drugs. The only issue is that means life with a needle in my chest. I’ll also likely be running fluids (if I have a say) because drinking less means I can try and eat more, and more of what’s on my nutritional plan, but we will see.

Let’s hope tomorrow (well today), brings less tear inducing drama. 

 

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Governmental Nonsense and Way Too Many Tears

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

Medical Marijuana Discussions

I live in California, where marijuana is now recreationally legal. Anyone over 21, can go to a dispensary, and buy marijuana. There are regulations on where you can use it if you’re smoking or vaping, but other than that, it’s all fair game. As a teenager and adult, I never had the urge to try marijuana. Yes, I’d heard about it, but with all the medication I was already being put on and taken off of, it just seemed like a risk. Not to mention all the drug testing for school, work, and medical tests. Then the gastroparesis situation got dangerously bad, along with the Behcet’s, and you all know that story.

With the legalization of marijuana I don’t need to renew my medical card at the end of the month, but I likely will if I can find the funds, because it’ll entitle me to certain discounts, and provisions for having more in my possession than a recreational user. Not that I’ll ever have that much in my possession, I’m way too broke to store that much weed, but it’s nice to know that, were I to move somewhere that allowed me to grow some, I could.

Recently I’ve graduated to vaping a few times a day. It isn’t something I particularly enjoy, because for me I’d rather take less medication, including marijuana. I view it as both a recreational option, as well as something that has medicinal benefits. It’s all about how you use it. I would thoroughly enjoy the opportunity to join the recreational trend, and just use it periodically to relax, alone or with friends. Right now, I could theoretically smoke more with friends, or different strains with friends, and feel different than I do when I use it medicinally…but it sort of throws me off mentally.

How can something I rely on to avoid hospitalizations and severe dehydration, also be something I use for fun

My brain keeps comparing it to opioids because of what a professor said about the legalization of marijuana being a gateway to the legalization of heroin. Obviously he was off base, just based on the reality that heroin doesn’t have a direct medicinal use in it’s abused form…but it is an opiate. Opiates can be prescribed to treat pain. In fact, a lot of heroin users started by abusing pain killers. They switched to heroin because it’s cheaper. So what is it? What defines something as a recreational drug, versus something that is used medicinally?

In the end I think it comes down to how it’s used, and how it’s acquired. Yes, marijuana is legal in my state. If you smoke it until you can’t function, pay your bills, or exist, then you’re an addict akin to an alcoholic. If you use it periodically in a responsible manner, then you’re a recreational user. If you use it as recommended by a physician, then you’re a medicinal user. It seems simple, but people judge you anyhow.

Now that it is legal in California, people view my regular use of Marijuana, as though I’m some stoner who can’t get by without being high. Truth is that I’m rarely high unless I overshoot my intake, or change to a new strain that impacts me in an unexpected manner. 

I need marijuana, but only because Zofran can only do so much. (Not to mention waiting for it to kick in when you have gastroparesis can be excruciating. There’s nothing like taking an antiemetic and knowing you’ll probably throw it up…) If I can get a port, and start getting more IV fluids, then perhaps the nausea will be more manageable. As it is, I’m sort of low on options for treating the nausea. I can’t take any more Zofran than I am, and they would prefer I take less, because apparently there is a link between Zofran and an increased seizure risk. Phenergan increases your risk of developing a movement disorder, which is a problem since I’ve been on it so long. That caused a decrease in my dose, and I’m only supposed to use that as absolutely necessary. I’m allergic to Compazine. I thought I wasn’t because I didn’t have flat out dystonia like I did years ago, but after a few doses it felt like my muscles were on fire, and I was super twitchy.

Today I’ve had a bowl of gluten free macaroni and cheese, and two small rice crispy treats. I feel like I’ve eaten an entire family’s Thanksgiving meal.

This is life with gastroparesis. What I did eat, was courtesy of weed. I’m beyond grateful that I was able to even get that down. I haven’t had water today, just a little gatorade, and yes, I’m bad, I had soda. I’m working on giving it up, but I am addicted to caffeine. I’m also a graduate student with 2 weeks left of class before she starts her thesis, so I mean, it is what it is at this point. (Let’s toss in a personal life in turmoil, and finances in ruins, and I think we can excuse the fact that I consume 1-2 cans of cola a day.) Thankfully, for whatever reason, fizzy beverages are easier on my system than flat ones.

So yes, friends, family, and potential future people that I meet…I use marijuana and it has undoubtedly saved me from hospitalizations, passing out, and at one point, a feeding tube. 

On one side of the page is the list of symptoms relating to chronic illnesses you have, on the other side are the tools you have to deal with those symptoms. Ginger helps with nausea, it’s also totally legal for anyone to buy and consume because they just like ginger. It is possible for something to be enjoyable and fun for one person, while another person uses it for help in dealing with their health.

Medical Marijuana Discussions

Very Hard Day

I am an emotional eater, which would be fine if it weren’t for gastroparesis. Last night there were a few things that frazzled me, on top of it already being a busy night because of New Year’s Eve. NYE is my favorite holiday, and between some random events, and fighting off a cold, I’ve been left paying for it. I took a two hour nap, and I’m legitimately contemplating going to bed right now…it isn’t even 7pm.

Chronic illness takes a lot out of you, so when something happens that would leave a “normal” person tired, it can leave a chronically ill person super exhausted. Today it hurts to even move. I can’t imagine doing anything other than sleeping. I’m hoping my roommate takes my dog out…and I ate too much. The nausea and pain are definitely not enjoyable, but at least some of what I ate had nutrition I needed, namely protein.

This is one of those situations where I want to conquer the world, but I know I have to just relax and allow my body a chance to recover. Despite my seizure medications, I’ve had several moments where I thought I was about to have a seizure today. It’s worrisome. I’m hoping I don’t because I don’t want to deal with it. I know I should be more concerned about how a seizure impacts my body and brain, but I know all of that. My main concern is just not wanting to deal with my roommate being worried, potentially dealing with EMS, and even ending up in the ER.

I keep telling myself it’s okay to take a day to just recover, but I also want to conquer today because I swore I’d be a fighter in 2018, Of course, knowing when to relax is part of being a fighter…

Perhaps a shower will help things. It may just put me to sleep, but that isn’t the worst outcome. I don’t nap, so if I do, it’s usually a sign my body really needs the rest. I didn’t go to bed until around 4:30am, and I’d taken sleeping medication far earlier. That means the drugs wore off and I was left attempting to fend for myself and sleep naturally. I can only sleep in short spurts, hence the naps today.

I am not a quitter if I take a day off from being positive. I know that, and I have to embrace that. I didn’t have a good evening. I mean I did, then I didn’t, and the chaos and emotional aspects flared up the already active flare that i’ve been in. It was the kind of thing that leaves all parts of you raw. Despite the resolution, and the rational thinking I’m so fond of, I need to allow myself the ability to be angry, and sad.

Today is not a good day physically, and it’s a rough day emotionally, so together they’re feeding on one another, creating even more aggravating physical symptoms. Acknowledging that, and sleeping when I need to sleep, is the right thing to do. It may feel like giving up, but it’s really just recharging.

I am not a quitter.

Giving up isn’t an option, but taking a time out is. So today is a time out, a moment to listen to my body, and use heating pads and hot water bottles, to treat the aches and pains. Sleeping at random hours, and for long periods, is giving my brain the chance it needs to relax. (Please note: there was a long pause after the phrase “needs to,” because I literally couldn’t figure out something other than recharge to place afterwards. Clearly I should listen and take another nap!)

Happy New Year. Listen to your body regardless of whether or not it’s a holiday. You are your body’s best advocate, so be the best you can be.

Very Hard Day

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.

Changing Your Expectations and Being Okay with It

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?

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!