Flare City – Autoimmune Blister and Staph Infection

It’s no secret that I’ve been stuck in a pretty constant flare that only seems to be getting worse. The only option I have is to wait for my insurance to approve IVIG. We’ve done one steroid dose pack and I’m preparing for a second. To make things even more fun, my rheumatologist is out on maternity leave, and my insurance company was taken over by another company (it’s a contract deal). The transition hasn’t been smooth, to the point where I can’t even call and get a hold of someone at my insurance company…and I’ve even trying for six weeks.

Yes folks, you read that properly, I haven’t been able to speak to a human being at my insurance company for over six weeks.

While this may annoy the average 31-year-old insured individual, it’s definitely not the best when you’re in the middle of complex insurance approval processes. My chair is coming on Monday (if I can work out a payment plan), but IVIG still remains in limbo. My rheumatologist’s replacement suggested I switch to another practice, something that was discussed a year ago but discarded as I prefer my rheumatologist, and the university hospital nearby has a horrid chief of rheumatology (or at least did a year ago). Point is, I like my rheumatologist, she just happened to have a baby the same time period where my insurance company went to shit.

I was dealing with the increased gastroparesis symptoms, the GI bleeding, the fatigue, all of it…and then something new for me happened. I woke up last weekend, with a blister on my hand. It was just a little thing, but over the course of the day it got worse and worse. There was speculation on my part, and my friends’ parts, over what caused this blister. The best we could come up with is that my hot water bottle somehow burned me, but I didn’t wake up, and the bottle doesn’t have a leak. Moreover, I haven’t ever had an issue with it. So this blister just keeps getting worse, and eventually it takes over my entire knuckle and is working down into my hand.

I’m being eaten by a blister of unknown origin.

My friend Mike is a chef, and he informs me that I need to ignore everyone else’s advice and just pop it, throw some antibacterial ointment on it, and go about my life. I call him stupid until the thing begins to get so big I don’t have much of a choice. I was not having that thing pop in my sleep, and realistically I’m too clumsy not to bump it on something and randomly (and disgustingly) pop it unexpectedly.

Gross.

I pop it, and it’s not really anything special. I throw some bacitracin on it, and call it a day. The next day it’s tender, but not abnormal, and I keep it open so it can heal, but I’m careful to keep it clean, or so I thought. The next few days are a blur because I wasn’t feeling well in general, and I had an allergist appointment. What I do remember is looking at the spot where the blister had been, and being in denial that it was infected…until the day I went to the allergist, when I realized it was scabbing over pus filled portions, and literally creating an abscess.

Double gross.

I went from my allergist to my primary care doctor, who promptly told me I was correct, and it was definitely infected. He also informed me that autoimmune blistering is an actual thing. My body literally attacked the layers of my skin, creating a blister because it just destroyed a section on my hand. He gave me a prescription for antibiotics, but by the next day it was worse. Way worse. The night I’d gotten antibiotics it had worsened to the point where I had a thin layer of skin covering what was undoubtedly my tendon.

You shouldn’t be able to watch your tendons move, and while it was disturbing, I will admit it was kind of cool. Still, I don’t recommend it.

My doctor calls after I take another dose of the antibiotics that were already making me feel like total hell. Apparently I have a multi-drug resistant staph-infection, and while it isn’t MRSA, it doesn’t matter, because I’m allergic to all drugs ending in -cillin. Yay. We’ve established it’s getting rapidly worse, because I’m taking a boatload of immune suppressing drugs, even though they’re not doing a great job at treating my Behcet’s anyhow. Fantastic universe. So I’m sent to the ER.

The ER wasn’t too busy because of the time of day I went in. They ended up wanting an MRI because there was a chance my joint and tendon were infected, but thankfully they weren’t. That would have meant being admitted and going on IV drugs for a few days. I was given an IV push of an antibiotic (but honestly can’t remember the name), and send home on Keflex. I hate Keflex because of the nausea it  causes, but I don’t have much of a choice because of my allergies. Another issue I have with Keflex is kind of weird. It makes me really drowsy, and actually gives me a fever. Not a high fever, but around 100-101, which also makes me feel crappy.

If that weren’t enough, I’ve been dealing with stress over finances, namely insurance funds, and coming up with the money for moving and medical equipment. Life should be easier when I have less rent to pay, but saving up the money to pay insurance installments three months at a time, is going to be really hard. This rough patch also doesn’t help.

Can we address the reality that my body is flaring, and there is a decent chance that the stress made it worse…and my body blistered itself. 

I’m still sort of in awe that a body is capable of doing something like that. I think most of us who deal with autoimmune issues, have moments where we’re shocked at the destructive power of our own bodies. I’ve witnessed countless things, including losing the ability to move because of hyperactive reflexes, but somehow this one blister was more intense for me. I think there was something about being able to actually see with my eyes what my body was capable of. It was as though I was in some long cold war, and then someone dropped the first bomb. I was aware I was in a flare, I knew what was going on inside of my body, but seeing it externally was a whole new game. I’ve got an oral ulcer, and a few other external signs I’m flaring, but there was something about a blister that just felt different.

My roommate has reminded me to relax, that he’s handling the movers and the moving fees, but I’ve never had to rely so much on others, and it’s definitely taking it’s toll. For now I guess it’s all I can do. IVIG can’t come fast enough.

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Flare City – Autoimmune Blister and Staph Infection

Family Planning (NSFW-ish)

Okay folks, there will be some basic biology talk in this post so if you don’t want to read about any of that, I’ll see you next blog 🙂

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Ah yes, birth control. That thing you wanted until you turned 30, then immediately wanted to burn so you could start a family with the guy of your dreams…just kidding, this isn’t a sitcom. I was put on the pill at 16 because I had periods that were brutal. It turned out that I had really bad ovarian cysts. I was on the pill from 2002 until 2014. I wasn’t on anything for a little over a year. Then, after a year and a half (or so), I got an IUD. There is my birth control journey in a nutshell. There were different types of pills involved, but because of my cyst issues (and what turned out to be endometriosis) I needed high dose oral contraceptives. I went off for a little over a year because I wanted to see if cysts were still an issue, and while they were, the endometriosis was really more of an issue than the cysts were. At the time it wasn’t diagnosed, though. Once I kicked the pill, my doctor felt comfortable with the diagnosis. So how does this all fit into Behcet’s?

For starters, there is an awkward give and take with the whole birth control issue. Most of my medications are contraindicated in pregnancy. Some are actually so bad for pregnancy, I had to prove I was taking reliable measures to avoid becoming pregnant. Of course my family history of blood clots, and having vasculitis, meant I was pushing the limits of estrogen containing birth control pills. My doctor had told me that being on birth control pills that contained estrogen, was a surefire way to get a blood clot.

I really didn’t want a blood clot.

I was able to forgo birth control entirely because I had failed to get control over periods using non-estrogen containing oral contraceptives. They had wanted to use an IUD, but I was super afraid at the time. I also knew that I wanted children in the next five years. At the time I was with someone who had lab work that showed issues, issues that would make conception without intervention highly unlikely. The chances were low enough that, when presented with the numbers, my gynecologist was comfortable enough with me going sans birth control, despite being on medication that usually required me to be on birth control.

Score one for male factor infertility.

I don’t do drama, so for the record, my ex did go on to have an adorable baby boy with his gorgeous girlfriend. While we were together I was informed given the information at my disposal, that we could not have children. Indeed, I was able to stay off of birth control for well over a year, without a pregnancy. 

Now, for so many years the goal of life was to avoid pregnancy. Let’s me honest, for most of us that’s how it goes. We try to avoid pregnancies, until all of a sudden we realize we want kids. Some people are lucky enough to avoid pregnancy, then become pregnant, when they find it convenient. Other people find themselves getting pregnant when they didn’t plan on it, or struggling to get pregnant at all. Then there are the weird sick women out there, who have the added benefit of having to seriously plan out pregnancies because of illnesses and medications.

Doctors have had various recommendations for me. Some have looked at the research and been comfortable with my proclamation that I want children some day. For many women with Behcet’s, pregnancy brings a relief from symptoms. Doctors don’t really know why, but Behcet’s symptoms, and even the disease itself, tend to lessen during pregnancy, and even shortly afterwards. Of course some women have worsening symptoms during pregnancy, and more have issues following the birth of their children, but there was hope.

Other doctors have acted like I’m insane. The medications alone make it a really risky idea. I would have to stop certain medications for a certain period of time, but also be able to start pregnancy safe medications within that time, to keep all my symptoms in check. A seizure during pregnancy would be really bad. Gastroparesis makes me nauseas and struggling to feed myself adequately, how in the world will I be able to nourish a growing baby? They point at the unknowns genetically in terms of how many people in my family have autoimmune ailments. Of course there is no guarantee that I’ll be passing anything along.

The rest fall somewhere in the middle, which I feel is the right place to be. I definitely don’t expect to have an easy go of it, but I would like to have at least one or two children of my own. I would love an adopted child, or a stepchild, just as much, but there is something about a biological child that does call to me. I’ve definitely considered IVF with a surrogate, but that is an expensive route. It’s also the safest in terms of what would be best for the baby. (Think about it, my body does a poor job of keeping me alive, entrusting it with a fetus seems terrifying to me.) A surrogacy would also mean I could stay on a lot of my medications, or at least go back on medications sooner. (Some medications you cannot be taking because they pass along birth defects via the egg, so I would have to stop those prior to egg harvesting.)

Is this a fun read or what…

I know my best chance at having a healthy biological child, is via a surrogate, but it doesn’t make thinking about it any less daunting. I mean, I was married, I’m in the process of getting a divorce, I’ll be 32 in April…and there is a timeline on fertility. I didn’t do myself any favors with the chemo. (I still don’t know if there was damage to my eggs, but again, that’s not something I can really know without specific fertility testing. My insurance only covers fertility tests if you’ve been trying to conceive for a period of time without success.

I’m pretty sure I don’t meet the qualifications of trying for any period of time, given the fact that I’m painfully single.

Another issue for me is that I did have early stage cervical cancer. They removed a pretty decent size of my cervix, and the location has made it more likely for me to experience issues with premature labor. So, you know, as if it weren’t enough to have Behcet’s with heavy GI involvement including gastroparesis…I had to go and get cervical cancer, too. Don’t get me wrong, I am beyond grateful that it was caught early, and that I only needed local surgery instead of a more invasive surgery and chemotherapy. It just would have been nice if I could have avoided cancer all together.

Doing six months of chemotherapy, then getting diagnosed with cancer? Yeah, that’s only something that happens in my life.

This is another rambling blog, but today was infusion day, and I’m in that weird headspace of sleepy, but full of vitamins. I hope I find someone someday who can love me, illnesses and all. I also hope that they want children (or already have children) and are supportive of whatever pathway to parenthood we choose together. It may not be conventional, but that’s okay. Right now I do have an IUD. It was placed before I was diagnosed with cancer, and I’m thrilled with it. It controls my endometriosis issues, and I don’t know it’s even there. There isn’t a worry for me regarding pregnancy, which is important still with all the medications I’m taking. With my nausea issues, vomiting, and malabsorption, it was time to get something that didn’t rely on another pill I would have to remember to take. Plus, no estrogen!

Family Planning (NSFW-ish)

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

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

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?

Don’t Make Decisions When You’re Panicking

My friend Molly lives in Mexico. She works in the U.S., but she lives in Mexico, and she loves it. Lately I’ve been struggling financially. That’s a lie, I’m drowning financially. As I try and come up with ways to stem the financial hemorrhage, while my symptoms increase, my mind starts to scramble, I start to tell myself I should just run. It isn’t rational, and I know it…but I can’t help but embrace the flight after so spending so much time embracing the fight.

This is why you don’t make a decision while you’re panicking.

In the past month, I’ve thought about moving to Virginia, North Carolina, New York, Washington DC, Washington State, Los Angeles, and Texas. This isn’t an over exaggeration. If anything, I’m forgetting a state or two. The only real reason I haven’t moved forward is that I love it where I am, and the thought of having to move myself, and two dogs, wherever, is daunting. I’d also have to rent my room out.

It isn’t undoable, it’s just not something I should (or would) rush into. I have thoughts, though. I think about stopping my medications, seeing what happens. It isn’t because I want to get sicker, but because some part of me hopes that I would get better. There is no logic behind it, in fact, I know logically that it would be a terrible plan. Even on my current medications, I struggle to get by. I required IV fluids on Monday, and I’m sure gastroenterology tomorrow will decide I should be getting IV fluids more often. (At least I hope they come to that conclusion. Waiting until I’m sick enough to warrant an urgent care or ER visit, is just not good for my body.)

I want to go camping. I want to have a normal life. I want to ice skate on the beach. I want to fish off a pier.

It isn’t just about what I want though, it’s about what I need.

As I move forward with scheduling an appointment with the new mental health provider at literally the only clinic within 30 miles that takes my insurance, I have to face the reality that they’ll force me back into counseling. Don’t get me wrong, counseling is a wonderful tool, and it has definitely helped me in the past…but the type of counseling I would receive, isn’t the type of counseling that would help me in this instance. We could go through my history, and evaluate why I feel how I feel about myself, the causes for my low self esteem…but that won’t change the limitations that I have now.

I’ve found a lot of counselors don’t know how to approach someone who is chronically ill, which is a part of a the reason why I blog, and started an Instagram. It’s also why I plan on starting up a YouTube channel once I’m able to acquire the space and privacy. Us sick folks talk to one another, but we aren’t really honest about the emotional toll our illnesses take on us. We may joke about not having personal lives, being in long-term relationships with our heating pads, or cheating on Naproxen with Acetaminophen…but the thread in all of that is that we joke about it.

When you’re chronically ill, you’re more likely to make light of your difficulties, than to be honest about them. You’ve been judged for complaining, so now when you need to vent, you do it in a comical way. Friends laugh with you, even chronically ill friends…but who do you have that is willing to listen to you when you’re genuinely struggling?

I think the answer to that question is probably scary. I had a friend who would always listen to me, and I would always listen to her…until one day she told me my disease was consuming me. This was about a month ago, and I shut down. I threw myself into only being positive about my disease and the conditions that sprung off of it. And while I know that there is a lot of positive things that I can focus on as a result of having Behcet’s, I’d be lying if I didn’t admit that I grieve the loss of a lot of things, especially this time of year.

When I was younger I made plans. I was the insane planner. Even when I began to get ill, I still had plans. I didn’t think about my disease worsening. I couldn’t have imagined the path my life would take. While the divorce should have been foreseeable (it was to those around me), my Behcet’s becoming the severe was never even on my radar. My ex told me nobody would ever love a sick girl like me, but I had told myself he was only saying it to hurt me. He knew that I was insecure about my health, I still am, and he couldn’t have known at that point in time that my health would rapidly decline…still…the words haunt me.

I had plans to have kids around the age of 30. I’m 31, single, and am on several drugs that you absolutely cannot take during pregnancy. It also isn’t known whether or not the Cytoxan impacted my fertility or not. My run in with cervical cancer also cost me a chunk of my cervix, right in the center. While I was lucky not to need further treatment, just a few more biopsies and regular tests each year, I was warned that I would potentially need a cerclage during pregnancy to prevent preterm labor. Two different doctors also told me, point blank, that I would be high risk from the second I conceived. The second told me that even without the drugs I’m taking that cause issues during pregnancy, I would still need to carefully plan any pregnancies. It isn’t a case of deciding when I’m ready to start a family, it’s about actually seeing doctors months in advance for blood work, supplements, and other tests.

It isn’t just the idea of starting a family. I know that I theoretically have time for that, and there is adoption and surrogacy if carrying a child myself isn’t possible. The other issue is that it’s the holidays. While most people love this time of year, I find it utterly depressing. For years I was in an unhappy marriage, and the holidays meant making sure to put on the correct face and attitude. I had to be convincing. I had to go to my ex’s coworkers’ parties, and while there were some good times in my marriage that I could lean on for support, there were many many reasons why I was anxious in these situations. Would I say something wrong? Was he looking at me in a way that meant something I should be able to pick up on?

I had thought being free of that would mean that I could relax, but because of my health, I haven’t really been able to enjoy the holidays. While I’ll never truly know what he, or anyone else for that matter, is actually thinking during the holidays, I know that I look around and feel so utterly alone. Thanksgiving? I can’t eat. Christmas? I desperately want to ice skate this year…but I know that doing so would require adaptive equipment and I don’t want to be the girl with a walker on the ice skating rink. Perhaps I’ll go see a movie on Christmas day, to try and distract myself from just how alone I feel…but there is so much of me that resents my body during these periods of time.

Plus time! Holidays remind me that time is passing,g and I can remember last year choosing to do all of my chemo treatments near holidays so that this year the holidays would have to be better. Instead I’m being reminded that I sacrificed those holidays and now I’m stuck fighting for a treatment that manages my symptoms better. I don’t regret doing chemotherapy, it was the right choice, I’m just desperate for something that can make me enjoy my days in general.

The holidays are just anxiety provoking for me. I want so much, but am so limited. Even the idea of getting my wheelchair has been bogged down by the reality that the process takes some time…and my insurance coverage is going to be gone soon. The up and down and go-go-go of the seasons, probably give most people with chronic illnesses a bit of anxiety!

I told myself for Halloween I’d carve a pumpkin, but I didn’t. I told myself for Thanksgiving I would find gluten free stuffing, and spend time with my friend in Los Angeles, but I couldn’t. There are things I want to do for Christmas, but I’m afraid to even say what they are, because I don’t know how to make them happen. Perhaps I will go ice skate on the beach, even if it means using adaptive equipment, but I would have to do it alone. Nobody I know could afford to go, hell I can’t afford to go, but I really want to do it. (It’s on my bucket list.) The people I do know who could afford to go, probably wouldn’t want to see me with one of those stands children use to keep themselves from falling.

To be honest I really wish I could just spend a weekend in a cabin, and see the dogs play in the snow.

Well, I guess I put it into words. Perhaps the idea is to have ideas, but no expectations. I wanted to be somewhere else at this stage in my life, and I may just have to accept that my path has shifted. It doesn’t mean I won’t have the things I wanted, I just have to find a new way of getting there…

Don’t Make Decisions When You’re Panicking

Grieve and then Grow

I woke up today several times. It was one of those mornings when nausea wakes me up, so I handle it with medical marijuana because it’s the fastest working thing that won’t increase my seizure risk…then go back to sleep until it returns. My rheumatologist messaged me back and basically had said that I needed to see my primary care doctor, or go to urgent care/the ER. My primary care doctor didn’t have openings, and urgent care is closer.

At this point I know what I need…fluids and nauseas drugs. I also know the reality is I need something to make this flare go away. Nothing is going to make this flare go away, at least not anything that can be reasonably sustained over a period of time. The ER this time of year is a just a pile of germs, especially after a holiday weekend, and unfortunately urgent care wasn’t much better.

The first doctor was sort of baffled by my symptoms, and wanted me to go to the ER and be admitted to the hospital. She recognized what I already knew…anything they did today, was just going to be a stop gap measure. I needed treatment of the underlying cause, not just the symptoms. Preaching to the choir doctor…but I’m not going to hang out in the hospital while confused staff rheumatologists go through my charts and realize we’ve tried all of the conventional stuff. She also said the marijuana could be causing my constipation. The day I used the most was the day I finally went to the bathroom, probably because I was able to drink enough water that day…

So she gets a bit flustered and says she can’t make me go to the hospital, and I ask if I can get fluids and nausea meds there (in urgent care) and she says yes.

Let the process of trying to draw my blood and place an IV commence…

Look, I have bad veins by all standards, but toss in the vasculitis and even the best nurse is going to struggle. They manage to get the IV in, but drawing blood requires two nurses, because one has to keep the needle in place while the other swaps tubes. I also bleed super slow, so that was making it extra fun. After this point a new doctor comes in, because of shift change, and he’s a laid back guy. He agrees I’m flaring, contemplates trying a different steroid, but after talking about my prior issues with steroids (needing super high doses for any sort of efficacy) he agrees that my original plan makes the most sense. Get the fluids, check the labs, and switch over to a high fluid diet in lieu of solids. It’s better to eat ice pops and Jell-o, than to end up in the ER because I’ve had solids but no fluids.

When you’ve been sick for so long, you learn to sort of gauge what the right response is to whatever symptoms arise. It’s only when something new pops up, that you’re truly thrown off. My doctors, especially ER doctors who haven’t seen me before, are going to struggle a bit to process what the best course of action is. I get it. If I were any other patient, you’d keep me until I had symptom control. I won’t get symptom control that can be extended after my exit from the hospital. It isn’t a pessimistic view, it’s reality. At this point in time, there isn’t anything they can do for me during an admission, that is going to extend beyond 1-2 w weeks post admission.

That is the depressing part. I want a normal life, LA with my friends for the holidays, ice skating, and running around the beach. I want to join a sports league in my city, so I can meet new people, and bowl!

Could I bowl? Absolutely. Could I plan in advance what days I would be physically able to bowl? No. That is the part that sucks. I am normal, but I can’t be normal. I want to work, I want to buy things on Cyber Monday, and I want to make holiday plans. There are so many things my friends and family members are doing, that I just can’t, at least not consistently.

This has been the struggle with disability. There are some days when I am able, but other days when I need medical intervention just to obtain adequate hydration. I don’t get to choose which days are which. I can choose when I get some of my medical procedures, but again, that doesn’t guarantee what days I’ll feel what way.

It isn’t all, “I hate my life!”

One thing I’ve been wanting to do lately, is bring people together who struggle with chronic illnesses. I am optimistic, and I do cope, but I definitely have days when I just can’t, and that is okay! Kick, scream, cry, do whatever it is you need to do. Embrace the anger and the sadness. Why? You need to make peace with the negative parts of your illness. I always thought it was black and white. That if I was pessimistic, at all, I would be giving power to the disease. The truth is that we can’t be honestly positive, until we have embraced the things we’ve lost to our diseases.

How can I appreciate the interest I’ve found in investigative forensics, unless I own the fact that I’ve lost my ability to really be in a laboratory environment on a consistent basis? How can I appreciate the absolute amazingness of my friends who have stood by me, or have come into my life during this difficult journey, until I grieve for the friends and family that I’ve lost because they couldn’t handle my illness?

Turn the losses into gains, by acknowledging just how beautiful your new circumstances are…because they’ve grown from the loss of something else.

Grieve. I grieve the loss right now, of my ability to do the things I would normally do this time of year. I grieve the opportunity to join a sports club. I grieve for my financial losses. I grieve because it’s natural, and because I know that I will be able to connect these losses together once something beautiful has grown up from their roots.

I don’t believe that everything happens for a reason, but I do believe that positivity allows you to make sense of the things that have happened in your life.

Grieve and then Grow