The Fear Post.

So I should get this out of the way. As I mentioned in my anger post, fear is a feeling that I know far better than anger. I am angry about my PsA diagnosis, but far more fearful. Here are a few of those fears:

PsA is a degenerative disease – meaning my body’s plan is to keep breaking down. To what degree and at what pace is unknown. And don’t we all fear the unknown? I fear that I won’t be able to live a healthy, able-bodied life much longer. And I’m only 36. I fear that my condition will force me to leave my job and go on disability. And I love my job. I fear pain – and lots of it. I fear that my family/friends/coworkers will get tired of hearing about/dealing with my condition. I fear being judged when I park in handicap parking spots (even though I have a handicap parking pass) because you can’t tell by looking at me how much it hurts to walk through the parking lot. I fear missing out on work opportunities because of my pain and fatigue. I fear missing out on life opportunities because of my pain and fatigue. I fear that future tattoos I get might not heal properly. I feel getting a cold. I fear that I won’t be able to go geocaching with my nieces and nephews anymore. I fear walking down stairs cuz it fracking hurts. I fear deformity. I fear missing out. I fear dying young from a rare complication of PsA (they exist). I fear there will never be a cure.

I’m afraid that travel – something that many of my life goals/plans had been centered around – is going to be severely limited by my condition. My husband and I went to Vegas to celebrate my 36th birthday. I was on a Prednisone taper and feeling just about zero pain at the time. We did a lot of walking, as one is apt to do in Vegas, and suddenly – my left peroneal tendon (in my ankle) slipped out of place. What the damn hell?! Just walking down the Strip and my damn tendon shifted! I couldn’t put any weight on it and this is what the rest of the trip looked like:10383952_10153823575939813_4793874695335561226_n
Mobility scooter in Vegas, wheelchair escort through the airport, all the handicap parking.

I fear my medication. I inject 10mg of Methotrexate subcutaneously every Friday night. Cuz I know how to party. My dosage is scheduled to go up to 15 mg in a few weeks. Methotrexate (MTX) is a chemotherapy drug. For realz. A chemotherapy drug that is also used as an immunosuppresant to try to get my immune system to stop attacking itself. Or at least to quiet the attack down. I have to take 2mg of folic acid daily to prevent side effects such as mouth sores, nausea, hot flashes, dry mouth, fatigue and hair loss. These are just a few possible side effects of Methotrexate – they include almost anything right up to and including cancer as a possible side effect. That’s right, a chemotherapy drug with a possible side effect of cancer. Dafuq?

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I’ve been taking MTX for a little over a month. It’s supposed to take up to 8 weeks to fully kick in, but I think it’s already helping a little. So that’s good! But I’m afraid of the side effects I might experience when my dosage gets bumped in a few weeks. And I’m even more afraid to start Humira at that same time, which is my rheumatologist’s current plan for me. I don’t even think I can handle an entirely new set of terrible side effects. I might ask her if I can wait a bit before adding it to the mix.

So those are my fears. My best friend always tells me how strong I am for facing my fears every day and doing what I want to do instead of letting them stop me. She always tells me that I am so strong, and that is nice. But I’m so tired of having to be strong all the time. It makes me very whiny. And sometimes weepy. And several other emojis. But when you’re tired of being tired, and your situation isn’t about to change, then you need a new perspective. So the Gratitude post is forthcoming.

Unicorn Tuesdays.

I’m reading a book about time management: 15 Secrets Successful People Know About Time Management. I like it a lot more than I ever thought I could like a book on the subject. One of its recommendations is to theme your days: Management Monday, Product Development Friday, etc.. I read this chapter on a Tuesday morning on my way into work (on the train, not driving!), so I decided that it would be Unicorn Tuesday. Probably not what the author meant, but I liked it. And it was a damn fine day! Everything went smoothly and I was super productive! Not like Wednesday. Wednesday bit me in the ass. Nothing happened on schedule and a miscommunication with my rheumatologist led to my emotional turmoil (now resolved). I decided that the trouble with Wednesday was that there just wasn’t enough unicorns. Or possibly that there wasn’t a theme. This calls for some experimentation but I can tell you one thing – Unicorn Tuesdays are here to stay.

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(This may be a catricorn.)

So I should journal about my psoriatic arthritis, I suppose. I started hand therapy this week! 🙂 I learned that my right hand is far more dysfunctional than I realized! 😦 The therapist had me bend my fingers in certain ways, then measured the angles of my joints. I had no idea how severely limited the range of motion of my fingers was until she had me do this. It was somewhat devastating. :/ She gave me several suggestions on how I should hold things and open things, and exercises I can do. So that’s moving forward.

I also had an appointment with a functional medicine doctor. She’s an MD, but very holistic. I requested food sensitivity testing to see what foods might be triggering an inflammatory response in my body. I gotta keep that shit to a minimum, yo. Have you ever had food sensitivity testing? It is hella expensive! But I can’t really think of anything more important than my health for me to invest in. I should have the results in about four weeks. I’m excited and terrified. There are three foods that I absolutely cannot live without: tomatoes, peanut butter and bananas. Tomatoes are a problem for a lot of people with arthritis of all types, so that is concerning for me. I eat peanut butter every day of my life and bananas most days. This is what I have for breakfast at least four days each week:
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  • 1/4 block organic tofu (don’t judge)
  • 1 banana
  • chia and/or flax seed
  • unsweetened cocoa powder (Rapunzel brand)
  • unsweetened peanut butter (chunky)
  • baby kale
  • unsweetened plain almond milk

That mess is delicious!! I am praying to whoever may be listening that those foods are kosher. As it were. I had three more medical appointments this week: physical therapy for my left food and bilateral Achilles tendons, wellness coaching to continue working on my weight loss, and primary care. Because there’s no rest for the wicked, or the arthritic.

Here is some good news: I think the methotrexate is starting to help! Is that possible after only four weeks? I don’t care, I’ll take a placebo effect if that’s all it is. My pain level has been more like a 6/10, down from an 8/10. I’ll take that shit. Grateful!

Angry and stuff

My therapist says that I won’t be able to accept my diagnosis until I grieve what I envisioned my life being like without psoriatic arthritis. I googled how to do this and apparently I’m supposed to get angry and depressed.
This does not really appeal to me…

My therapist strongly encouraged journaling, so here it goes.

I was officially diagnosed with psoriatic arthritis (PsA) on December 10, 2015. It had been brewing for a few years; I knew for a while that something was wrong and that it was probably PsA. It started with pain in the joints of my fingers during the winter season. I live in Minnesota, so that only bothered me 237 days of the year. Then, in October of 2014, I stepped out of bed one morning and felt a sharp pain in the fourth toe of my left foot. I didn’t think much of it – don’t we all get random sharp pains in our feet or ankles on occasion from stepping down weird? But two days later I had it x-rayed because it had me limping. The x-ray was normal. In the following months, the left fourth toe pain morphed into left plantar fasciitis-type pain  right plantar fasciitis-type pain → left Achilles tendon pain → right Achilles tendon pain. I saw two doctors and was diagnosed with Achilles tendinitis and possible plantar fasciitis. One of my doctors wasn’t concerned and told me in a blasé fashion that she had been battling with plantar fasciitis on and off for nine years. As if that was acceptable and was totally supposed to put my mind at ease! My other doctor prescribed me some heel cups for my shoes and recommended some Achilles tendon stretches. Being a healthcare provider myself, I try to be very proactive about my health, so I also received regular acupuncture and chiropractic treatments along with the occasional massage. I had been going to physical therapy for a tune-up of my low back and the physical therapist gave me a few ideas of how to support my feet and ankles. I also kinesio-taped my feet and ankles regularly, which helped more than anything, and spent a small fortune on supportive, unattractive shoes. I had been working with a wellness coach all year to address the 100 extra pounds I had been carrying around. I was eating obnoxiously clean, exercising regularly and losing weight steadily. I was seemingly doing everything right, so what was with this pain?

During these months, a very big wish came true for me. I had been in private practice for eight years and hated every second of it. I loved patient care, but detested running a business. I was incredibly grateful to get a job with a local hospital system, which meant I could close my business. I did just that and excitedly started my new job in June, 2015.

One day in September, I woke with a sharp pain in my right index finger. I thought I had slept with my hand scrunched up under my head or something. I don’t know what goes on in my unconscious mind that gets me so angsty, but I frequently wake up with one or both of my hands curled up in a tight fist like I’m ready to throw down. I went to work and didn’t think much of it.

Except the pain didn’t stop.

I’m right hand dominant. A whole lot of my job relies on my right hand. The dream job. That I just got. Suddenly, both my doctors wanted me to see a rheumatologist. I had seen one 1.5 years prior for the intermittent finger pain I had in the cold months. She tested me for everything short of exploding head syndrome (it’s a thing, look it up) and declared that I was pretty darn normal. Because I had psoriasis and there wasn’t any other explanation for my pain, she felt that I may be developing PsA, but that it wasn’t severe enough to treat. Case temporarily closed. One of my docs wanted me to see a new rheumy*, as we call them in the rheumatically-challenged world, and that shit takes like four months to happen! They are booked out forever! So I scheduled an appointment for four months out.

All of my pain got worse. I continued with all of my health appointments, exercised in moderation, lost 53 pounds (damn right!) and the pain just got worse. I was so frustrated – I was doing everything right and my body was betraying me! At work, I limped from patient to patient and, while my hand was still functional, it hurt like hell. Then one day it stopped functioning. I couldn’t tear open an alcohol swab. I left work, went to the doctor and was started on a Prednisone taper. My other doctor put in a direct message to the rheumy who I wasn’t supposed to see for another 3 months, asking her to please double book me, squeeze me in anywhere. I saw her the next week, on December 10, 2015. And here we are: psoriatic arthritis of my right hand, left foot and both Achilles tendons.

OK, now for the anger. Fire and brimstone and shit:

  • I am angry that psoriatic arthritis happened to me. This next statement is hard for me because it’s my least favorite children’s whine, but here it goes: it’s not fair.
  • I am frustrated that my doctors didn’t figure it out sooner. I had the foot pain for 14 months before my official diagnosis happened. I was repeatedly misdiagnosed. PsA attacks not only the joints, but also the tendons and cartilage. What they thought was Achilles tendinitis was PsA of my Achilles tendons – a very common spot to get it, actually.
  • I am pissed off that my body is rejecting all the good that I’m doing for it and marching to its own sadistic drummer.
  • I feel completely screwed over because all this happened right when I got my dream job. I finally felt successful for the first time in my life and then this!
  • Is jealousy a form of anger? I am wildly jealous (OK, and angry) that other women can go do DSW and buy any damn pair of shoes that they want without even thinking about it! I WANT CUTE SHOES AGAIN!
  • 1/2/16 edit/added bonus: I’m angry that there isn’t more information about PsA. From what I can find, rheumatoid arthritis, which is similar, is not much more common than PsA, but is talked about so much more! What is that about? It makes me feel very isolated.

I think that’s all I got, I’m not very good at being angry. Maybe there’s more brewing under the surface? I dunno. Now fearfear is a feeling I am much more accustomed to. And I have a lot of it regarding my diagnosis. And that will be another post.

* Actual medical definition of “rheumy” is super gross, don’t look it up. No offense to the rheumatologists out there. Also, there is no such phrase as “rheumatically-challenged”. Don’t judge me, it’s not my fault, I’m rheumatically-challenged.