“How are you feeing?” The most common question I get these days, and the hardest one to answer.

I usually give the condensed version, but here is a more detailed update on my progress and status this week.

    Lungs

The best way to describe my lungs healing, is that I am still conscious of my breathing. The improvement since I began the steroids is significant, as I would no longer describe the feeling of not being able to get enough air into my lungs or gasping for breath or the intense coughing fits. But my breathing is heavier when I walk for longer periods of time or at a quicker pace. I can walk up the stairs in one go but then need to take a deeper breath at the top to feel as my lungs are full. And then throughout the day, I notice needing to sit to slow down my breathing or again, taking a few slow breaths to feel more comfortable.

And even just my energy and alertness level. My body was so deprived before I was admitted, I was sleeping about 16 hours a day. And had no energy to even get out of bed in the waking hours. I am now living a “normal” schedule by being awake during the day and being functional in the basics, like bathing, eating, cooking, cleaning, shopping, being a mother – you know – all the good stuff!

I have my own personal oxygen monitor and my levels have not shown any signs of concern since I have been home and on room air 100% of the time. Well, only once, but I had just walked up two tall flights of stairs, and within a couple of minutes, I was back up in the high 90s.

    Surgery

Gah! I did not expect to still be sore from the surgery. But everyone who has the medical knowledge reminds me that they did cut into me in multiple spots, which required them to go through my skin and muscle, through my ribs, then through the casing around my lungs and then chopped some of my lung right out – and took it out back through those very holes!

The best way to describe this pain, is that it feels like I have a super pulled muscle, right underneath my breast. Which makes sense, cause that’s what I have. My muscle healing back together. This is still really limiting movement like carrying things and opening doors with my left arm and sitting up or laying down without having to roll onto my side.

All of the steristips have now fallen off – just the other day the last one came off, again something I wasn’t expecting to take so long. But, I don’t wanna rush the little pieces of tape holding me together either! I like my scars. I was told there would be little incisions underneath my arm, then two under my breast and then the hole for the chest tube. So in my interpretation of that, I imagined the incisions being about 1 cm in length, each. Turns out “little” equals a scar of about 2 inches under my arm and 1.5 inches below my breast. Under my arm just looks like a straight ridged line. The one under my breast is similar, but there is more of a divot or fold to the area. And the cross scar from the chest tube might actually not be noticeable one day, as right now it is quite flat and looks more like a cut, as opposed to a scar.

    Medication

Wow. Steroids. The Miracle Drug. This is definitely the area of “How are you feeling?” that affects me the most. The side effects are atrocious. But, again, I would rather take the negative of the steroids, than not seeing any improvement with my lungs at all and still be bedridden. I am experiencing the common side effects I was warned about.

– Moon Face = The term used to described the puffiness you get in your face and neck. The steroid I am taking, prednisone, causes/creates a release of the hormone cortisol. This makes my body want to create fat pockets in my cheeks and neck and potentially my upper back (which I haven’t seen yet). I question why these pockets of fat can’t be concentrated on my breasts or butt, but I wasn’t consulted for my personal input on this.

– Abdominal Swelling = My abdomen, right below my breast is extended and hard. It’s like I am pregnant but up too high.

– Difficulty Sleeping = I first noticed trouble falling asleep in the hospital, but attributed that to the business of my surroundings, and as began to heal from the surgery, my mind was becoming clearer too, allowing me to think more about other things than I had been able to before. But now that I am home, I can see that it was the prednisone, starting to affect my sleep patterns. Since I have been home, I have had many nights where it is past 3am before I am asleep and then I am awake by 7am. First I can’t shut my mind off to fall asleep. And then I wake too early and cannot fall back asleep. But the prednisone gives me “energy”, so I am able to get up and start my day.
But I do know that I need proper sleep to assist with my recovery, so before turning to taking additional medication to help me sleep, I am trying some more natural options. Simple as aromatherapy. And I have had 8 hours sleep these last two nights. So I am hoping I can keep this schedule now going forward. Wait…what time is it? Gah! I need to get to bed! (Side note – Arrine woke up before me this morning, but then let me sleep, instead of her normally waking me when she wakes. She said it was because she knew I needed more sleep. Gosh darn it – what a kid. Makes my heart hurt I love her so much.)

– Eating = I always feel that I have a metallic taste in my mouth. And food doesn’t taste the same. So I crave super salty or super sweet things. I normally craved salt before this, but I never really had a sweet tooth. And the prednisone is thinning my stomach lining, so heartburn is new to me too. However, I did find a low alcohol content beer that I can drink without it hurting me, so that was a major discovery. I can’t even enjoy my beloved Coors Light.

– Knee Swelling = My knees can become very swollen. I keep a positive outlook and attribute it to me being active again, and needing to get my strength back, instead of a sign of the vasculitis spreading. But I most definitely feel knee pain and discomfort throughout the day, just with walking and being on my feet.

    Chiropractor

I saw my chiropractor the day after I was out of the hospital. The very next day. I knew I needed him to help with my recovery. He has now admitted that with my first visit he was concerned with how little he could do, but since then, he has been happy with the alignments and he keeps seeing improvement. I see him every 5-6 days and he has been working on my swollen knees, overall adjustments, and specifically, getting my ribs back in place. Once I began to see the abdominal swelling, he worked on that as well, which I do see improvement in. And he also started using a laser treatment on my surgery area. The laser is supposed to help the muscle fibres heal, and after two treatments, I have noticed less dependancy on my pain medication, which pleases me.

    Trainer

It’s hard mentally to not be training as I was before. And I plan to write about that in a dedicated post. But I met with my trainer for lunch and we had a good talk about how to approach my recovery. Because I cannot do the workouts we were doing before, as they were complete body, high intensity workouts, the plan is to work on muscle isolation to begin to gain the strength back that I have lost. Slowly working up to incorporating more complete muscle groups being engaged and the intensity. So now, it’s really like I am just doing weight lifting – biceps curls, tricep extensions, leg lifts. All isolated muscle movement that I can do without further straining my core from the surgery. With the idea that once I am fully healed from the surgery, I will still have been gaining strength to start again with more full body movement as I was before. Sounds like a plan to me.

    Therapist

I finally was able to see him just a couple of days ago for the first time since I have been ill. So our session was really just to let him know what has happened, and the areas I need to explore more with him in future sessions. But we did talk about the one thing I have been thinking about the most. After my mom died, I remember the very first session with him and saying, “I should be more fucked up than I am.” At the time, I felt I was doing amazingly well for what I had been through with her death, but it literally took me years to realize that I was so fucked up, I didn’t even know I was fucked up. But now I know and I am no longer fucked up…or am I??? Well, not with my mom’s death. But that is a concern I have now. I feel that I am handling this health challenge relatively well, from a mental standpoint. But is that because I am so fucked up about it, that I don’t even know? Follow me? Good news – he says I am not fucked up. Doc says that how I have expressed myself about the illness and my concerns, he doesn’t feel that I am in denial, and instead, I am quite aware of the reality of this and creating my own way of challenging it. So that is good to hear.

The other topics that I need to cover with him going forward are:

– How do I live with the unknown? (He noted that not having a plan for my treatment from the lack of diagnosis does not fit well with my personality of wanting to be proactive and reducing risks and HAVING A PLAN.)

– How do I let go of the previous stressors in my life that we talked about so I can focus on my health and recovery instead? Just because I fell ill, doesn’t take away all the crap I was trying to figure out BEFORE this all happened.

– Tools to help with all these steroid side effects that are bringing me down…

    So Now What?

Well, my days as a stay-at-home mom are almost done. I have absolutely adored these last two weeks at home with Arrine. And really just wanna keep staying at home. But alas, I need to work to make money to pay the mortgage for said home. On Monday I am going to try 4 hours of work. And do that for the week and see how it is. I haven’t really thought about it yet. Like really thought about work. And I probably will be nervous returning. And I will probably end up crying somehow. But that’s ok. Cause now it takes longer for my tears to run down my huge puffy cheeks, giving me more time to be able to wipe them away before they fall on any important papers and make water marks.

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