Angry and stuff

Reposted from my blog (+ all profanity filtered out)

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 mess 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 (darn 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 horribly. 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 such:

  • 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 mad that my body is rejecting all the good that I’m doing for it and marching to its own sadistic drummer.
  • I feel completely cheated that 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 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.

I hear you! At this point I have the benefit of time. It's been eight and a half years since diagnosis for me. I was very angry as well, and I just didn't get it. Mine started with one finger at a time, and thank goodness I was diagnosed fast. Having the benefit of time has given me better perspective. There are still times that I get upset, but more understanding and better perspective makes it easier to handle.

In terms of the lack of information, there is a great book that is recommended on this site. But yes, I follow some RA sites because there simply isn't as much out there about psoriatic arthritis.

Love this, Junix! I too am wildly jealous (OK, and angry) that other women can go on and buy any pair of shoes that they want without even thinking about it! I WANT CUTE SHOES AGAIN! (Sorry about the plagiarism, I couldn't have said it better myself.)

As for information, you will like the book that I recommend under BOOK REVIEWS. It is getting outdated (especially in the information about biologics) but it is still the most in-depth and yet readable information source that I've found. People with a medical background do not find it too elementary. It's a great reference book, and I even gifted my GP with one.

Thanks again for the blog!

Thank you for the recommendations, I will check them out! :)

Great to bare all and I totally am with you … Pissed!!! Depressed… Grieving. Thank you for sharing this too shall pass.