Free Fall

Photo by ian dooley on Unsplash

One of my greatest fears is falling. It’s not the height that scares me. It’s the fast lack of grip, the surge to the bottom. I don’t like being out of control.

Never have.

Ironically, a recurring theme in my life is losing control. I never learn to let go and enjoy the fall, see where it takes me.

Never will.

For the past four months, I’ve been fighting to keep my health insurance plan. My state changed the minimum annual income requirement back in March, and we’re now $400 over the mark. $400 is far from enough to cover the cost of a yearly deductible and monthly premium, plus co-pays and prescriptions. Yet in the state’s eyes, we should be able to afford it no problem. They don’t account for rent and heat. They don’t even look at your income after taxes.

We looked at my husband’s company’s insurance plan, too. Even though it’s a bit cheaper than one of the state market’s plans, we still can’t afford it.

We’re already struggling.

I’m really grateful that we had state insurance these past few years. Because of it, I was able to get a diagnosis and start treatment for my UCTD. Still, we can’t afford another plan, and we definitely can’t afford my treatment and monitoring without insurance.

I looked into several avenues, but they all came down to one thing: soon I’d be out of medicine.

Once I run out of medicine, my disease becomes aggressive. It isn’t long before I’m bedridden again and I’m unable to care for myself. To write. To live.

I felt myself spinning out of control. One of my other greatest fears is my disease. I’ve worked hard to get to where I am. I’ll be damned if I go back.

The fear is suffocating. My rheumatologist and I have determined that Plaquenil isn’t enough, that I need to add other medicines. Plaquenil has been so very therapeutic for me, but it’s not a magic bullet. I still have pain and stiffness, fatigue and brain fog, and other symptoms that may be related but definitely need further testing.

It doesn’t help that someone I love with an even more severe condition is losing her insurance, too. Chronically ill people rely on social services, but those programs are always the first to go when states need to make budget cuts.

I’m too scared to feel angry.

I have one last thing I can try. It’s a long shot, and I’m only going to have a small window. If I’m successful, it’ll be the net that catches me at the bottom. If I fail, well… I guess I’ll have to finally learn to let go.

Can’t Win (Plaquenil, 1 Year)

My Christmas cactus that I got the same day I started Plaquenil.

Today I’ve been on Plaquenil for exactly one year. While Plaquenil and Prednisone worked really well for my joint pain, both gave me some unfavorable side effects. Prednisone made my blood sugar skyrocket and threw some of my other labs off, so I had to wean off it. Plaquenil did okay on its own, but for some reason the GI side effects—diarrhea, heartburn—just keep getting worse. I had to come down to one pill a day instead of two.

I’m feeling it.

My rheumatologist said that if I flare, she’ll put me back on Prednisone, so there’s a good chance I’ll be starting it soon. I want to feel better—and I really want my hands and hips back—but I’m scared of the high blood pressure, freaky blood sugar, and weight gain. So I may have been holding off on making that phone call.

It feels like I can’t win.

This may be TMI, but Plaquenil can be an outright asshole. At first it seemed like it wasn’t getting along with dairy, but now it seems to give me diarrhea randomly. Heartburn, too. You’d think those are minor side effects, but trust me, they can quickly ruin your day. And your night.

SIGH.

Still, I look at posts and pictures from a year ago, and I know these two medications have saved me, side effects be damned. It comes down to a choice: would I rather debilitating joint pain and fatigue, or random bouts of diarrhea and heartburn, paired with high blood pressure, blood sugar spikes and crashes, and hot flashes?

via GIPHY

I’m trying to hang in there until my rheumatology appointment; playing phone tag is not my idea of fun, and I get shitty cell service in my apartment, which makes it even worse. I’d rather speak to her in person and go over our options. (She’s wonderful on the phone, too, but connecting is always a challenge.)

My appointment is almost two weeks away, though, so I’m gonna have to call.

It doesn’t help that I’m facing losing my health insurance, but that’s a whole other post. The gist of it is, my state changed its income regulations this year and we are now just a couple hundred dollars over the requirement. Yet we can’t afford a monthly premium and we sure as hell can’t afford appointments and prescriptions out of pocket. A friend suggested I can appeal the denial, but we weren’t denied—I’m stuck in an Access Health CT website loop. (If you live in my state, you know what I mean.) So that’s another phone call I’m dreading but have to make.

via GIPHY

It’ll work out, though. In the meantime it’s all about managing my pain and anxiety.

On the plus side, if I start Prednisone again, I’ll be able to take notes for my classes. (My hands have not been digging this whole pen holding thing.) I’ll also be able to type faster.

And did I mention that my beautiful Christmas cactus is now a year old? It’s now so full and there are several vibrant blooms (with dozens more budding). A month ago, it didn’t seem like it was going to bloom at all. A year ago, I wasn’t sure I could keep it alive. (I’m all right with succulents, but this one came from a pharmacy and I didn’t know how it would do.)

There’s a metaphor in here about patience and faith. I think.

What Does It Mean to Have Undifferentiated Connective Tissue Disease?

Photo by Vladislav Muslakov on Unsplash

In December 2016, I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD). I’d been suffering from symptoms for a decade, and the diagnosis was a relief. Finally, I could start some kind of treatment and maybe get some of my life back!

There are a lot of misconceptions about UCTD, and autoimmune diseases in general. Part of the problem is, we don’t know a whole lot about them. We do know that the immune system gets confused and starts attacking healthy tissue. This can cause a lot of problems.

My disease, UCTD, is like the center of a three-way Venn diagram, with Rheumatoid Arthritis, Sjogren’s Syndrome, and Lupus the three overlapping circles. UCTD is at the center, meaning people with UCTD have symptoms from all three of these awful diseases.

It’s the best of both worlds.

The “undifferentiated” part means that the patient is presenting symptoms from all three diseases and their blood work doesn’t point clearly to any one disease. My symptoms and labs lean more toward Lupus. I have:

  • joint pain and stiffness
  • fatigue
  • dry eyes and mouth
  • hair loss
  • numbness and tingling
  • anti-double-stranded DNA (anti-dsDNA)
  • positive antinuclear antibody (ANA)

Sometimes I have bladder and GI issues, but it’s unclear whether they’re related.

People with UCTD sometimes go on to fully develop one (or more) of these diseases. Sometimes UCTD just stays put. It can also go away entirely. My rheumatologist is monitoring me for kidney involvement, which is how we’ll know if my UCTD is developing into Lupus.

In all likelihood, my UCTD is here to stay; I’ve had it for over a decade now and it only seems to be getting worse, not better. Since my labs have been stable, though, it’s also likely that I won’t develop Lupus.

This doesn’t mean that UCTD is at all mild. Though it doesn’t involve organ damage, the joint pain and other symptoms can be debilitating. When I’m flaring, I’m mostly homebound, or even bedridden.

To treat my disease, I take 200 mg of Plaquenil and 500 mg of Naprosyn twice a day. I also take Tramadol as needed. My rheumatologist is trying to avoid putting me back on Prednisone because its long-term side effects are pretty nasty, and I was just on it for nine months. Unfortunately, I’ve been flaring since I stopped Prednisone completely. If the Naprosyn doesn’t help my joint pain and stiffness, we’ll try something else.

It’s also important for me to eat right, get plenty of sleep, manage stress, and exercise as much as possible.

Even though having UCTD has been quite the adjustment, I’m learning to live around it. I listen to my body, resting when I need to and being careful not to overdo it. I’m also lucky to have Mike, who cares for me so tenderly and makes me laugh even in the worst of it.

The Real Cost of Chronic Illness

via some ecards

Chronic illness costs more than you’d think. Financially speaking, it’s the thousands of dollars spent on doctor’s appointments and medications. It’s the medicines, salves, and mobility aids not covered by insurance. It’s takeout in place of a home-cooked meal. It’s time lost at work due to sleepless nights and bone deep fatigue. It’s whole careers and goals, and starting over with new dreams and hopes.

There’s also an emotional toll.

It’s the frustration of finding the right treatment and the side effects of medications. It’s the devastation of years of pain. It’s evenings crying at the sink because it hurts to wash dishes when wrists bend to scrub. It’s the sharp inhalation of breath every time you bend over because knees won’t bend and hips shift as if on broken glass. It’s feeling exhausted after taking a shower, or skipping one because it’d only wipe you out completely.

Then there’s the pain of friends and family who don’t get it. It’s comments like “You’re not using your cane! You must be all better!” It’s dismissive belittling: “That’s not too heavy,” “You just need to walk more.” It’s the feigned interest, the change of subject.

The most substantial cost, though, comes when those close to you—the people you thought understood—actually don’t. It’s the priciest lesson, the deepest cut.

It’s a common occurrence for people with chronic illnesses. It happens to us all the time. We’re treated as an inconvenience—or worse, we’re treated as if we’re purposely inconveniencing someone else.

As if we have control over our illnesses or the weather.

Chronic illness teaches you who’s real and who isn’t, who truly belongs in your life. People like my mom and sister, who stopped by when I couldn’t go apple picking a few weeks ago and brought me apple cider donuts. They drank tea with me and turned an otherwise miserable and lonely afternoon into a nice memory.

All people like me need is a bit of understanding. We don’t enjoy canceling plans. It’s not fun being stuck home under an electric blanket and painkillers. I’d much rather be able to get out and live, but my body often has other plans. Slowly I’m learning to live around it, but it’s even harder to live around a broken heart.

Getting Out for My Own Sanity

I had such a great weekend. I’m still really low on spoons, but it was worth it.

I kicked it off on Thursday with Chapel and Good Charlotte at Toad’s Place with my sister Lauren. Chapel was new to me, but I fell a little bit in love—especially with their drummer, Kortney. She was excellent, and she also looked like she was having the time of her life, dancing and smiling the entire time she played. There may be a future character inspired by her.

Good Charlotte played well, but after middle act 3OH!3, the atmosphere changed. The crowd got pretty aggressive. We were getting shoved and hit. Let me tell you, when you’re already really sore, the last thing in the world you want is to get beat on at what should have been a tame show. Good Charlotte actually stopped playing to tell people to knock it off—that’s how bad it was.

We ended up leaving early because it was nearly midnight and Good Charlotte was still playing. As much as we would’ve liked to stay, we both agreed that we were tired… and sick of getting knocked around by other women and giant douchebags alike.

That was my first and last experience with EDM. I’ve debated whether I even wanted to write about this. But I’ve been to dozens of concerts—even stood in mosh pits—and I’ve never had such a horrible experience. It’s hard to explain, but in pits, everyone is there to bump into each other. Sometimes people get hurt, but it’s all in good fun. And everyone in the pit is there for the same thing. This was general admission—no mosh pit—and the house was packed. It was about a thousand degrees and you couldn’t breathe without brushing the person next to you. People really wanted to hurt each other; at one point, someone ripped a crowdsurfing guy down and people started beating on him.

I really think the shitty EDM group set a bad tone. Not only were their lyrics misogynistic and excessively raunchy, but the “music” itself made you feel bad. My heart was vibrating in my chest, the little hairs on my arms were shaking, and I actually felt nauseous. Throw in the lights and bass pounding on you, and… ugh. I will never understand EDM. Ever.

I mean, I don’t wanna sound surly, but the whole experience was bizarre. Even though I was enjoying the Good Charlotte nostalgia, I was really glad when Lauren asked if I was ready to head out. They’re her all-time favorite band, so I didn’t want to tap out on her, but I was more than ready.

Saturday night was much more tame, thankfully. It was time for Part II of our great summer concert weekend: Haerts and Michelle Branch. See, Lauren basically spent all summer prepping for the Bar and then taking the 12-hour exam itself, so when she saw these shows coming up, she decided to treat us. She more than earned it; everything I’ve heard about the Bar sounds brutal.

I brought my cane with me, and there was plenty of seating in the back, but we ended up right up near the stage. Carpe diem, right? No one beat on us this time, so that was cool. There were a lot of drunk girls, though, haha, and I think we both got spilled on a little—but I’ll take that over someone trying to knock me over.

Haerts was another new-to-me band, and again I fell in love. They’re ordinarily a duo, but they had a full band with them, and they sounded amazing. I thought Nini reminded me a bit of Stevie Nicks. She had some pipes on her!

Then it was time for Michelle Branch and let me just say, my inner 12-year-old self was completely validated. I was a little bit in awe, especially since she had a range of guitars, swapping them out for certain songs. She was the reason I started writing (terrible) songs in eighth grade. I used to carry around a notebook and dream of the day when I’d finally learn to play guitar and put my words to music.

Well, turns out I’m instrumentally challenged, but I haven’t stopped writing.

It also turns out that cane dancing is possible. Having a cane comes in handy when you need to get off your hip for a moment but don’t want to stop dancing. I definitely had a better time at the College Street Music Hall shows than I did at Toad’s on Thursday. I was also less sore after.

On Sunday, we got up early and drove to the lake to spend the day with Noni and Aunt Wendy. Unfortunately my mom had to sit this one out because of her neck. Even though we missed her, we had a great day.

I spent yesterday recovering and doing a bit of editing. My brain was mostly mush, though, and I was in bed by 7 p.m. (but didn’t fall asleep until around 2 a.m., sigh). Though I’m still pretty tired today, I’m still riding a Haerts and Michelle Branch buzz.

Music is a kind of magic to me. I’m really glad my sister got me out and about this weekend. It’s too easy to let the pain win, to get dragged into a life of hibernation, a routine of rest. While I try to listen to my body and take it easy as much as possible, sometimes—for my own sanity—I have to push it.

Sometimes the pain is worth it.

I’ll Go Down Swinging My Cane

Photo by Chris Barbalis on Unsplash

When I got sick 10 years ago, I wasn’t planning on getting sick. I was actually planning to grow my web design business, save up the good salary I was making, and have a family. I wanted three kids. I’d only just started dating Mike, so I can’t say I was planning on marrying him, but I was an 18-year-old woman with hopes and dreams. I didn’t plan on getting sick. My goal was not to leave the workforce and become homebound because of my illness. I wanted to travel, to eventually set down roots and buy a house. I didn’t plan on going on state insurance because my husband and I couldn’t afford his company’s plan. I didn’t foresee setting aside my dream of having a family.

Let me be clear: I love my life. I’m happy that, even though I’ve lost a lot, I have been able to pursue my other dream—being a storyteller—even while bedridden. But I did not plan on getting sick.

No one does.

Mothers don’t hope to give birth to a baby who loses a kidney before he can even walk. Veterans don’t think they’ll spend their retirement years battling cancer instead of enjoying their grandchildren. Hardworking women who once worked multiple jobs don’t pencil in getting emphysema and pneumonia on their schedule.

But it happens, because life happens.

Today the Senate voted to continue working to repeal Obamacare and replace it with Trumpcare. The proposed bill blocks people with pre-existing conditions from getting insurance, takes away funding from state insurance that helps low-income people, and all but cripples healthcare assistance for the elderly and disabled.

All of this right smack in the middle of my disease changing.

Aside from worrying about family members and friends who will definitely be affected by the Senate’s decision today—possibly mortally so—I’m concerned about me. Because not a day goes by that I don’t wonder how different things might be for me if I hadn’t gotten sick. Would I have a mortgage and three kids? Ironically, if I hadn’t gotten sick, I could afford to pay for my healthcare.

I didn’t get a chance to really blog about it, but I’m having bladder and nerve issues that may be related to my UCTD—that may indicate that it’s developing into Lupus. I’m waiting on labs that my new rheumatologist ordered to check on my kidneys. I’ll probably be seeing a urologist to figure out what’s going on with my bladder; a neurologist ruled out carpal tunnel and said she thinks my nerve pain is from my autoimmune disease. My rheumatologist said that Plaquenil can be great for some things but not others; I may be looking at adding another medication to my regimen.

More tests, followups, and medications that I cannot afford out of pocket.

Under Trumpcare, I’d be blocked from getting insurance because of my pre-existing condition. Right now, I truly don’t know what’s going to happen to me.

And I’m trying like hell right now to not think about the people I know who will actually die without their medications and treatments. Because if I do, I won’t be able to breathe.

Today my country made a shameful, disgusting decision—all because part of the government can’t stand that a black president dared to try to help sick, disabled, and low-income people. They can’t bear to let Obamacare exist, just like they couldn’t bear to allow the original bill to pass. Instead of trying to fix the things that are wrong with Obamacare—like the annual fee for uninsured people that, ironically enough, the GOP helped create because they bickered over the original bill—they’d rather burn it all down, out of spite. They’d rather not examine the exorbitant cost of healthcare and medication in this country. And now 24 to 32 million Americans face losing healthcare. Of those 32 million, a good percent of them will die without it.

I cried all afternoon. My eyes are swollen, my heart is broken, and my autoimmune disease continues to attack my connective tissues, nerves, and bladder. I don’t know what’s going to happen to me or my loved ones. I keep trying to find some hope tonight, something to hold onto. Because I’m one step closer to losing my healthcare, but it’s not over yet.

My Autoimmune Disease is Getting on My Nerves… Literally

Photo by Matheus Ferrero on Unsplash

I had a nerve conduction test with my new neurologist yesterday. The test was to see if the numbness, burning, and tingling in my hands is because of carpal tunnel. I was referred by my old rheumatologist.

I liked Dr. Z instantly. She is straight to the point, but really nice. Mike’s been seeing her, so I was already familiar with her and right at ease. Still, I was a bit nervous. Since my old rheumatologist referred me back in April, my symptoms have progressed.

  • the tip of my right index finger has a constant burning sensation
  • the area beneath my thumb on my left palm goes into spasms
  • my feet now get burning and tingling sensations

I had a feeling I wasn’t dealing with carpal tunnel.

During the test, Dr. Z and I chatted about my symptoms, my autoimmune disease, and which doctors I’ve seen. Even though she can seem brisk because she gets right down to things, I found her very warm and personable.

When the test was over, she explained how it worked. Basically, the computer measures how long it takes the electric stimulation to get from Point A to Point B. She showed me the normal ranges and where mine are: normal.

The good news is, she said I don’t have carpal tunnel.

The bad news is, she said it’s likely my autoimmune disease attacking my nerves.

In further good news, Dr. Z said there’s no nerve damage yet. She only tested my hands, and told me that if I’m still having the sensations in my feet in four weeks, to come back. (Since it’s a new symptom, she prefers to wait another month before testing.)

Next week I see my new rheumatologist. I really hope she can put these puzzle pieces together; neither bladder inflammation nor nervous system problems are really a UCTD thing. They’re more of a Lupus thing, and since Dr. S had said my UCTD could be pre-Lupus, I’m a little concerned.

Now that my joint pain is under control and I’m not bedridden or dependent on Mike to help me get dressed, I’d really like to address these other symptoms. I just hope that my new rheumatologist is willing to figure this out with me.

Autoimmune Diseases Suck

Photo by Hailey Kean on Unsplash

One of the things that suck the most about living with an autoimmune disease is the unexplainable symptoms that put your body under siege. Like, for example, feeling like you have a UTI—when you don’t.

It starts out of nowhere. You feel a burning sensation in your bladder. It also feels like you really need to pee. When you go, though, you only urinate a teeny tiny bit. The burning only eases a little.

It happens again and again, so you figure you must have a UTI. You make an appointment with your doctor. They run a urine culture… and it comes back negative. No infection. There’s nothing wrong with you.

But it keeps happening.

Regularly.

And every time, there’s no infection.

None of my doctors have ever been able to explain this to me. I’ve just learned to live with it. I had a tiny flare a few weeks ago, and a few weeks before that. Last night, though, I had a major flare.

For hours, I was miserable. I desperately looked it up, trying to find some kind of remedy. (When you have a UTI, you can get antibiotics from your doctor. So what do you do when you feel like you have a UTI but you don’t?) I found information about interstitial cystitis and Lupus cystitis, both of which have symptoms like what I experience.

“Cystitis” means inflammation in the bladder. Usually it’s caused by bacteria, in which case it’s a UTI.

Because I have UCTD that could be pre-Lupus, I try to note any changes in my “normal.” A few years ago, when I had another bad flare of this weird non-UTI, my doctor at the time found blood and protein in my urine. No one was ever able to explain why to me.

I suspect it’s yet another piece of the puzzle—a puzzle that’s slowly taken shape over the last decade.

I see my new rheumatologist next Thursday. Who knows? Maybe her fresh eyes will help make sense of all this.

In the meantime, I read on Mayo Clinic that taking NSAIDs and an antihistamine could help ease cystitis. It worked like a charm; I still feel dull burning, but it’s way more comfortable than it was.

Autoimmune diseases are so fun. 🙄

A Sudden Goodbye

Photo by Ross Findon on Unsplash

Yesterday my father-in-law told Mike that he got a letter saying that our rheumatologist was leaving the practice. I didn’t want it to be true, but I didn’t think my FIL was mistaken. So I called Dr. S’s office.

It’s true.

They couldn’t give me any information. The receptionist I spoke to said she honestly didn’t know. All the staff had been told was that it was personal. It was sudden. I asked about my appointment later this month, and she told me he was already gone.

I’ll be seeing one of the other rheumatologists that day instead.

I’m crushed.

I don’t know how to feel or what to expect from Dr. C. I don’t know if she’ll stick to Dr. S’s treatment plan. If she’ll change my diagnosis. If she’ll even take me seriously. Every time I see a new doctor, I have to start from zero. I have to convince them that, even though my labs are vague, I am legitimately sick.

Every single time.

This couldn’t come at a worse time. I’m dealing with new symptoms, that I thought were carpal tunnel but are now affecting my feet as well as my hands and wrists. There’s a chance that it could be my UCTD developing into Lupus. I need my rheumatologist, who has taken me seriously and worked very closely with me. Not a doctor I’m being shuffled off onto, who now has an even heavier load of patients.

I want to be optimistic. I really do. But it’s hard.

Summer Flare Makes Me Feel Fine

Photo by Erik-Jan Leusink on Unsplash

I’ve been flaring for just about two weeks now. Yesterday was particularly bad. I ended up calling it a day early and resting on the couch.

I think it has to do with the weather; the temps here have been in the low 70s, getting pretty chilly some nights. It’s been pretty miserable. After so many days of pain, I become convinced that I’ve never had pain-free days and never will again. Pain is smothering like that.

via GIPHY

Still, a few good things happened yesterday:

  • The healthcare bill vote has been delayed because the GOP didn’t have enough support. It’s not dead and bloated, but we blocked that son of a bitch. And we’ll keep blocking it.
  • I crossed 20,000 words for my WIP.
  • I got some potentially good news about a family member.

That’s how I’ve been getting through this flare. Focusing on the good. That and Advil twice a day, Tramadol at night. I haven’t really been sleeping, either, but last night I finally slept decently. Sheer exhaustion? Maybe. But I’d like to think that since my mind was eased a bit, I could burrow through the pain and rest.

I hate summer flares. They don’t happen often. My last was a couple years ago. I really didn’t expect one this summer, since Plaquenil has been working so well for me. Hopefully it’s just a weather thing—maybe we’ll just need to adjust my meds. I see my primary this week and my rheumatologist at the end of the month, so we’ll see.