Tag Archive | anemia

this is the way, walk in it

in 72 hours, i presented myself twice (and no less) to the Emergency Department, afraid of bscklash, wallowing in shame and guilt. how did things become this way?

in June, and even now in July, i struggle. i can tell you that having faith itself and claiming to have head knowledge are a world of a difference. i know that in my utter brokenness, my faith is lacking. i don’t claim as much as i can, my identity as the beloved child and daughter of God. i always remember from retreats and from conversations with friends, about how Peter walked on water. i have to learn from him, in that he trained his eyes on Jesus- he had faith and he believed! because when his eyes wandered he sank!

i have to constantly keep my gaze on God, my saviour! i may not always know why i am triggered or upset, but i guess i just have to put my faith and trust in Him? and yes, i have to learn to open the door of my heart to Him!!!

“He destined us in love to be his sons through Jesus Christ, according to the purpose of his will, to the praise of his glorious grace which he freely bestowed on us in the Beloved. In him we have redemption through his blood, the forgiveness of our trespasses, according to the riches of his grace which he lavished upon us.”

-Ephesians 1:5-8

p.s. Haemoglobin has dropped to 8.5g/dL, but they said it wasn’t low enough for a blood transfusion. Hand surgeons said Palmaris Longus and Flexor Carpi Radialis Sheath both sustained cuts (ie damage) but they weren’t gonna repair it. On a backslab now.

how gratifying

I saw my rheumy for my routine follow-up!

She sat with me for almost 30 minutes, and we spoke at length. We read my blood results together, and the same was done with my ultrasound report. We talked about life, we talked about my starting work next week, and i told her excitedly that if all is well, i should be a registered nurse by next March. We talked about how going back to work is going to do me good and give me my sense of purpose, and how being at work takes my mind off things. I think she was more excited than i am of starting work.

I asked her if i could get a new referral for physiotherapy as my back is killing me, with a hip now aggravating matters. After she examined me, she told me like a mother- she can be quite motherly, albeit she being a little too young to be- that i need to strengthen my back. Of course i agreed with her. But being reminded of how she told me the last time i saw her that i was deconditioned, i interjected, telling her that i returned to ballet class. She was delighted, and i guess she inferred very readily that i was trying- tring to be kinder to myself.

We ended the consultation with her telling me that she was glad to see me, knowing how i’m doing and seeing how i’m getting better and still trying, and then patting me on my back before she had to leave. Good for you!!! She says.

I think why i appreciate my rheumy so much is because she’s there. She’s been there for the past 4 years,and she has never left. 4 years is really quite awhile actually. She has become a constant in my life, just like the people i love. I can talk to her about anything, she actually remembers the things i do or say, and she is actually proud of me(hello i don’t think anyone else is actually proud of me). And she cares genuinely- it is not in a patronising or condescending manner whatsoever. (Of course saying all these, i still have moments when i feel like i’m fighting against her, and moments when i struggle with her treatment plan for me. But i’ve come to accept that they are quite inevitable no matter what.)

I think when life is as such, people like that can be very gratifying. It makes life with RA so much more bearable. The same about my rheumy can be said for my social worker too actually. And i want to be able to say the same about my psychiatrist and psychologist. When the people in your treatment team(s) are like that and the relationships therapeutic, everything becomes automatically better. Really.

ESR is up at 46, Hb still hovering at 10.3. She referred me to the occupational therapist for wrist splints seeing that the ultrasound revealed tenosynovitis in the extensor carpi ulnaris, and my hypersensitivity reaction to the ketoprofen plasters on my wrists. I also got the asked-for referral to the physiotherapist. We’re cutting down 1 tab of SSZ and 1 tab of HCQ for each day to reduce the number of pills i’m taking. Managed to get 2 bottles of salicylic acid 5% ointment to apply topically instead of the plasters. Oh and i got some free Celebrex(drug samples haha)! She’s not forcing me to up my Hb, but i think i may do so afterall. So that’s it till the next follow-up. Always hoping that my RA will mellow down till the next time i see her. Practically living from follow-up to the next.

I love my rheumy!!!

Ramblings

Several issues/things/whatever you call it, since my last post, and however trivial they may seem, my mind seems to be in a whirl. Maybe it’s change, that’s why. Gonna ramble on and on, so here goes:

Out in the wild (if you get what i mean), i’m doing my best to make sense of what’s to be life. My life. Or rather, doing things that need to be done and doing things that i want to do. I’ve put everything on halt for almost 6 months, and that is pretty darn long i must say. I musn’t let myself idle anymore. This mind of mine too. Let it idle for too long, and i’m good as gone.

My weakness while shopping definitely has to be Kikki.k. Everytime i walk into this shop, oh my gosh. I start to want everything. I had to restraint myself today, after seeing new collections appearing on shelves. If not i would’ve spent like $100+ at least. Told myself how the new collection will still be there the next time i come, and i guess procrastination is good enough as always, to hold myself back.

I have a Kindle, and i have many classics on it like Leo Tolstoy’s, Anton Chekov’s, Jane Austen’s, Virginia Woolf’s, Charle’s Dickens’, Victor Hugo’s, Dante Alighieri’s, Sigmund Freud’s and even Florence Nightingale . But i still love love love books. I have too many books left unread. So i’ve put them all on my reading list, and i am gonna try my darndest to at least move down the list bit by bit. Alrighty. I think i should put up my reading list on the side bar. Yesiree.

Physical health not in its best state. Just few days ago (Tuesday i think), i felt the exertional dyspnea/effort intolerance come back in full force. I thought it was a drop in my haemoglobin, but later on it felt like an electrolyte imbalance, but that was just a guesstimate. About 2 weeks ago i had 2 days of PR bleed, and after that happened, my resting heart rate went up insidiously from 90-100bpm, to about 100-110bpm. The last time Hb i know for myself was 9+, which was still low and i was thus still anemic. So i’ve been just fretting about my Hb these days. Today, i had a chance to ‘challenge’ and ‘exert’ myself in many ways by going out, being in a rush, carrying heavy stuff, and what not. It was absolutely horrible. Beyond horrible actually. My heart raced and i was very breathless. I became so tachycardic and dyspnec, i felt i just sprinted for a 100m race. Latest resting heart rate ranging from 98-115bpm. *sigh* And just today, i only voided like once in 12 hours, which was totally puzzling looking at my intake of fluids. Sigh. I don’t know what the shit this is, but i’m seeing my rheumy the week after. If it persists till then, maybe it’ll show up on my bloods. And if it doesn’t show up on my bloods, then uh-oh.

Planning on my comeback to ballet. First thing i have to start to do again is start stretching and conditioning. I wanted to do cardio because my stamina is terrible. But with a resting heart rate going as high as 110bpm, i don’t know what my heart will do. (Seriously. I don’t want to go into reversible heart failure ok!!!) So no cardio as long as the exertional dyspnea and tachycardia are still around. Just stretching and conditioning for now then. Gotta get off this lazy ass of mine.

Many things to do this coming week. Spending the weekend with my family as usual, and as Sam’s birthday is next Tuesday (which is a working day), we’ll be celebrating it for her during the weekend. Probably need to see my therapist about next Wednesday or so. Next Friday is packed packed packed. Seeing my psychologist and my shrink. Then i’m off to watch KIROV BALLET in DON QUIXOTE with worms!!! 🙂 but 😦

Gonna put up a post later about having to watch Alina Somova as Kitri.

Need to start meeting up with my close friends. LIKE SERIOUSLY.

It’s 2am now, and both my brother and Sam+boyfriend (they are considered as a single entity in my opinion) are not back yet. Waiting up for them, calm the dogs down, chat a little, then i’m gonna hit the sack.

shit happens

As i always like to say, SHIT HAPPENS.

I have been feeling quite okay physically as of late, and even though nothing much has changed, my body is turning its back on me once again. Maybe it’s because i am now taking my daily Arcoxia at night instead of in the morning, but i’ve only done so once. *hmm*

So yes, it’s coming back, and there is nothing i can do but to grit and bear. *sigh*

RA’s synovitis, stiffness, tenderness, and the pain that comes along with it…

Anemia’s exertional dyspnea, orthostasis, dizziness, palpitations and a bounding pulse…

And then there are the side effects of my treatment like the hand tremors and an unsteady gait and the worsening amnesia, which can all be so utterly embarrassing and annoying.

😦

Good things never last, do they?

Maybe things will be better when i wake up in the morning. Hopefully.

Rheumy <3

Just when I felt that all hope was lost with my RA, what happened today gave me hope that things may turn for the better in time to come.

I had actually promised myself that if nothing’s gonna change after today’s appointment, I would find another rheumy in another hospital. And I said that even though I loved my rheumy very much. Because I had hit the wall, and I just couldn’t bring myself to wait in vain anymore. Besides I was gonna be seen by a medical officer who was under the wing of my rheumy. MO? I had serious doubts.

And so with a heavy heart, I went for my appointment. I had to wait for 2 full hours just to see the MO and I was very frustrated by then. I don’t even wait that long to see my rheumy. In my mind raced many possible outcomes, and honestly, I felt like everything’s gonna be futile again. I felt that I was never going to have the respite I was seeking for. So there I was waiting, a nervous and hopeless wreck.

My bloodwork came back a little deranged. Hb still stands at 9.8 with a corresponding low haematocrit. ESR was 40 and CRP was some 21.5(at long last). Thankfully there was no transaminitis.

I finally figured out why I had to wait so long. The MO did a very thorough examination, as though he was clerking an inpatient. I was sorry to disappoint him because I didn’t show any rheumatoid nodules, nor explicit deformity. I felt like I failed as a patient. Hah.

And then my rheumy was finally called in *phew*, and I was so glad to see her(she was glad to see me too!). She decided that there wasn’t going to be any change to my triple-DMARD therapy. But she changed changed diclofenac to the expensive etoricoxib. When I thought I was condemned to pain, she decided to stay back after her last patient to talk with me personally.

Yay! I felt like I was finally going to be heard!

And so even though it was getting quite late, we had a heart-to-heart talk. I decided to make it very clear that I need better control of my RA. She thought about it, and decided that I will get my biologics by next month if the inflammation doesn’t improve. So there is hope after all! After waiting for a long 3.5 years.

I would say again, that she surprises me everytime, and today was no different. She was as empathetic as she always is, and tried to encourage me in different ways compared to what I’ve always been hearing. She always gives me the warm and fuzzy feeling! I told her that I was finally turning 21- both of us have been waiting for this day. We were both elated. It happens that today’s her birthday too, and we wished each other happy birthday. It was such a pleasant coincidence!

Left the hospital with a smile on my face, and the frustration that I had earlier was all gone.

Oh my. How can I not love my rheumy? She’s simply the best, and I’m just sorry that I’d doubted her.

Oh yes. And even though I rejected her suggestion to take ferrous fumarate to normalize the Hb, she respected my decision and did not kick up a fuss like how other doctors would.

She’s AWESOME.

Mmhmm

Hb 7.7

No thank you. I do not need or want a blood transfusion. I’m perfectly fine. Just a little exertional dyspnea and tachycardia- can’t kill me can it? ‘Medically unstable’ is a little of an exaggeration don’t you think? You tell me the drop in Hb must’ve been at least 1/2L of blood lost. Oh really? Where from?

Ferrous fumarate is all I allow you to force upon me. And once I get to decide, none of those sickening stuff. Nuh-uh.

Sickening shit.

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anemia is back!

I think my anemia is back.

Or should i say, i am almost definitely sure my anemia is back. Because the exertional dyspnea is back!

I did 10 bloody push-ups today, and although it usually is quite effortful, i was very tachycardic after i did a set today. My heart rate went up to 170+. Amazing shit huh. I don’t have to do cardio exercises to increase my heart rate! 😉 But that’s just stupid la, Steph.

Right acetabulum, aka hip socket, is inflamed. *meh* That dose of pred 50mg is still working quite well in my system. So that’s good.

I’ve just registered for ballet class which will start tomorrow. My first ballet class in about 9 months!!! I think i’ve mostly lost my flexibility and strength. But i hope my technique didn’t go down the drain as well. Hoping that the exertional dyspnea and tachycardia won’t be that bad in class tomorrow!

🙂

Bloodwork due soon, and seeing rheumy in 2 weeks. I’ll see how my bloodwork comes back then!

Hand tremors getting worse and worse without any propranolol. Disgusting to the max.