Excuse Me! But My Eyes Are Up Here! (No Wait, I Do Want You Looking At My Breasts)

My breasts are jealous of my lungs. “Autoimmune disease this. Lung biopsy surgery that. When do WE get some attention? We look waaay better than her lungs have ever looked. With or without her illness.”
So let’s talk about them.

Over these last couple of years, I have really accepted myself. From a body image perspective. I definitely know that my training influenced this. But also mentally, really loving the features I have and embracing them, as opposed to trying to downplay them. Part of it is finally understanding that there are going to be some people who look at me and like my features. And there are going to be some that don’t. So let’s focus on highlighting those things I already have, for those who already do like them. And for me.

There is so much attention placed on a woman’s breasts. From all sources. Sex. Femininity. Motherhood. Gender identification. We will actually look at the size and shape of a woman’s breasts, and instantly label or judge her personality, character and place within society. And they are just out there for open judgement. Even being clothed, we can still gain perspective from what we imagine underneath. And for myself, part of my personal acceptance has been related to my breasts.

I would never say that I have had a strong urge for larger breasts. Although I have never wished for smaller breasts. I guess I always felt that they fit my body frame and they weren’t “too small” and they weren’t “too big”. Having said that though, I have worn bras that help with cleavage and lift. I remember a guy friend once telling me, “Anything larger than a handful is a waste.” And I guess I held onto that. But I am pretty sure he wouldn’t have said that to a girl with “larger than a handful” breasts.

When I started burlesque, I was worried I would have Burlesque Breast Envy, because compared to other burlesque dancers, I would be smaller on average. But I was pleasantly surprised that it actually made me love my breasts even more. It confirmed all the things I love about them.

Delving into this self-acceptance, I found it was related to feeling natural. This body is my natural state. And whatever it may look like, it is beautiful and unique and mine. So why am I wearing a bra? Why am I containing my breasts with a contraption to mold them into another shape, when they really don’t need to be. It’s not as though my breasts are large enough that it is uncomfortable to be doing normal daily tasks without them being strapped down. So, one of my 2015 Resolutions was to “Wear a bra less often”. Also, in my research, I found that studies show that constant bra wearing can actually lead to more sagging of the breasts as you age, because your muscles are not having to do any work when your breast tissue is lifted up and supported by the bra. So, it began. At home and on weekend. Bra off. There are certain clothing items I wear, where I still wore a bra. But if I didn’t really need to, then it was off. And I loved it.

With my illness, I was braless for weeks!! When I returned home, I still went braless, also because the pain from my surgery didn’t allow me to wear anything under my breasts. But once I returned to work, I was faced with a new issue. What is considered “professional”? I am now wearing cotton bralettes, which really just act as a buffer layer. I personally would be fine without wearing any sort of bralette or bra. But what would my co-workers think? My male dominated, 30 to 50 year-old peer group? Because here we go back to the instant labeling and judgement.

Not wearing a bra could be viewed as overtly sexual. But that’s not my intent. My intent is to be comfortable and not wear something a man designed for a woman to wear, for the only purpose of shaping her to his desires. And it’s the man’s choice to choose to look at my natural breasts and view me this way. It reminds me of the news stories I have heard where girls in grade school were not allowed to wear spaghetti strap tank tops, as they were deemed inappropriate. These girls are not choosing to be looked at in a sexual manner. It’s the men who need to re-shift their views on how they connect bare skin to sex.

So what do I do? Bra or no bra at work? Yesterday I wore a dress to work, where I wouldn’t wear normally wear a bra with it. But I put on my little bralette for when I was at the office, and when I got to my car, I immediately took it off. Isn’t that ridiculous? And the other day when getting dressed, I tried on an underwire bra to see how it was with the pain. And when I looked at myself in the mirror I thought, “My breasts look HUGE!” The underwire bra made me feel unnatural and out of proportion. I have become so accustomed to my natural breast shape, I just felt silly wearing the bra.  

So. What to do? When will it be acceptable Business Dress Code for women to not wear a bra? It seems like the approach would need to be personalized for each set of breasts and what the clothing is. But it shouldn’t be. No matter the size or shape, a woman should be have the choice as to whether she wears a bra or not.

So what is not acceptable? Seeing the nipple definition through the cotton of your t-shirt? Seeing more movement to your breasts underneath your sweater dress? Seeing the breast in its natural state, only to have one thin layer of material between skin and the world? And who are making these rulings? The men who choose to view my breasts as sexually inviting, even though I am not advertising them as such?

And when will this happen? I think it’s the wavelength of us redirecting our definition of the breast and sex connection. Of course breasts have their role in sexual settings, but that shouldn’t be the focus, as that is not their true purpose. Breasts are for nourishment of our babies and provide comfort to our children. They have become a taboo that society has tucked away as to not distract or offend. But distracting and offending whom? Men?

So what do we do? For myself, I am going to keep going braless, when I feel comfortable doing so. And keep having the positive breast conversations with my daughter as I do now, and as she grows up too. And do little things along the way, to try to help others realize that female breasts and nipples are really not that big of a deal. Like we all have them. Everyone has seen them before. 

You can even come see mine when I perform on stage. And maybe I will let you motorboat me afterwards.

Still Kicking! (Well, Not Intense Kicking Yet)

New week. New normal.

My return to work was not as bad as I had anticipated. I was really nervous about seeing my coworkers and needing to answer questions and look different and be overwhelmed. But it was nothing like that. Our offices moved while I was on my leave, and my new office is on a floor without the rest of my project team. So I was able to tuck myself away and just get comfortable with being in the office again. I saw a few of the co-workers I was closer with, and those updates were fine. I did avoid a celebratory lunch with our client and entire team on the Thursday though, as I didn’t want that to be my “return” to everyone. I have our first client meeting on Thursday, so that is what I am mentally preparing for.

These are still kinda the same. Still conscious of my breathing. Even if I am sitting and talking a lot (like sharing my story when people ask), my breathing becomes a bit heavier and I need to take moments to take a deep breath. And at rehearsal tonight, I was able to do all the choreography (which is mostly walking movement), but really needed to focus on my breathing to keep my breathing more steady.

I still am taking pain medication 4 times a day. And learned the owie way that I still need this. However, I really am trying to work on extending the time between doses and lowering them too. Because really. Over a month now? Geez Louise!

I can now open doors with my left arm and carry bags. I still describe the area as tender, but more if I am stretching the area, like expanding my chest or lifting my arms above my head. But just being neutral, there is no pain (although I am still taking the pain medication). And the needing to roll onto my side to sit up from laying is starting to reduce in the amount of roll required for this movement.

The bruising is going away on all three incisions, and I am actually a bit sad that they seem to be getting less noticeable. They had become a part of me I was used to and I want them to stay!

And I think I am getting some sensation back in my left underarm and breast. It still has that “numb” sensation, but now the skin in that area sometimes feels itchy, but I can’t feel when I itch!!

– Moon Face = Still there. Cheeks so big I feel them growing and they are actually slightly painful.

– Abdominal Swelling = The work my chiropractor has been performing in this area seems to be helping. And then it comes back. So we will just keep working on this.

– Difficulty Sleeping = Still there. I have had days straight of not being able to fall asleep until between 3 and 4 am. But the early waking seems to be better. I can now sleep until about 9am, if I fall asleep mid-early morning. And it seems like the pattern I have is that for 3 or 4 days, I get about 3 or 4 hours of sleep in a row, and then my body is so exhausted, I can get an 8 hour sleep. On the days I don’t have Arrine, it allows me to sleep in more. Otherwise I am needing to get up at 7am no matter what to get her to school. I am still using Jasmine and I have hops in my pillow to help with sleep naturally.

– Eating = I think I am just getting used to the metallic taste in my mouth. And how food tastes now. How it doesn’t taste as good as I remember.

– Knee Swelling = The swelling isn’t as severe now. Before it would flare up just from being on my feet a lot. Now it only really flares up if I am being more physical, like with my workouts or at dance. I still get swelling from just walking throughout the day, but not so bad that it hinders my knee movement. Now they only seem to swell so much that hinders movement from more intense physical activity. Squatting all the way to the ground, or sitting on my knees with my bum on my feet can be done, it just takes longer to get down there and needs focus to get back up.

– Acne = The rheumatologist in the hospital told me the good news about the prednisone is that it should help with my acne. Which I would say has happened. My face is quite clear now, and I really just have redness and scaring from previous breakouts. However shortly after being released, I noticed an acne “rash” on the side of my head. This has now almost cleared up, but then another acne “rash” started on my chest and over my left shoulder. And when I have read other resources about prednisone, they have stated that it can cause acne. So who knows??

– Skin = Something I never mentioned before, is that my skin feels different to me. Like when I feel myself. The texture is different.

Still seeing him! But now it is down to just once a week. He keeps working on aligning my ribs, the swelling in my knees, just overall adjustments, my abdomen and the incision areas. I look forward to these appointments, because it seems like we are actually DOING something.

Just been pumping iron as per the plan. I am happy that each time I am able to increase weights and now I have been told to start working on increasing the reps too. AND I was able to do pushups from my knees!! I wasn’t expecting that I would be able to, but I tried the other day, and I did them, and then I cried. I was so happy with my progress. Man. It is so hard to feel so behind with everything. But I keep telling my body, “Muscle memory!! Remember your muscle memory!! You know what you are supposed to do!”

I have another appointment on Friday. Boom.

So Now What?
This week I am working half time again. Which seems to be a really great balance right now. My first lung specialist appointment is next Tuesday. I am to get a chest X-ray this week in preparation for it. I am desperately hoping that he sees the improvement he needs to see, to start reducing the prednisone dose. But at the same time, I am trying to prepare myself that this won’t happen. Just to avoid the disappointment.

I like being alive. And that’s what I focus on each day.

Don’t Feel Guilty

When you heard about my health, did you think, “I am so glad that isn’t happening to me.”

Yah, it’s ok. I wouldn’t want this to happen to anyone else either.

Did you have any guilt or shame with that thought?

Yah, let that go too. It’s a natural reaction to difficult news.

I don’t want your pity. I want your action. I want you to take good and positivity from my story.

In time I will write more about how my physical illness has altered my mental outlook on life. The changes it has created in me naturally, as well how I am making changes consciously.

For now, I want you to really think about those thoughts that keep reoccurring in your own mind. “I wish I had more time to take that art class.” “I want to be more engaged with my children.” “I wish I had never said those words to my sister. I want us to have the relationship we did before we were each married.” “This friend only takes from me. Why do I spend time with her?” “I need to let go of this anger.” “I want to stop smoking.” “I want to get a pedicure every month.”

Now do it. Make that choice. It’s yours to make.

Take what I have been faced with as your stepping off point for that action you and your heart long to make.

I don’t mind taking one for the team.

“How are you feeling?”

“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.


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.


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.


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.


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.


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.


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.

It’s Not All About Me

I have been writing all about me! How selfish. As there are many other people who have also been affected by my body’s recent decision to add some excitement to our lives.

Dear little Arrine. She is a doll. And she has been amazing through all of this. So many people would ask how I am doing, and then right away, “And how is Arrine?”

Well, there were definitely some times that were not great. At first when I was bedridden, she would bring her books and toys and tablet into bed with me. And just play by my side. I would save my energy during the day and then be able to get her to bed at least, with the help of my dad. And then I would just be going to sleep at the same time as her, around 8pm. No complaints. Just accepting that mommy is super tired and not feeling well.

But once I was in the hospital, it was harder on her. We explained to her the best we could what was going on, and always asked if she had any questions, but she never did. During her visits, she wouldn’t get in the bed with me, or want to hug or kiss me. And that broke my heart. But I didn’t push it. I can’t imagine the thoughts going through her little head. All she knew that mommy was not as she was before. And we didn’t have anything else to really tell her.

But through all this, Nick told me that she was still the amazing little girl she normally always is. So that did make my time away from her a teeny bit more tolerable.

And then one day she visited and got into bed with me and I got hugs and kisses. It was after we were able to tell her that I would be going home the next week. I think it just took her having a tangible end to my time in the hospital. And once I was able to get up and go on walks with my super cool walker, it was slowly shifting back to what she once knew.

And now in her eyes, things are almost the same as before. She knows that mommy is more tired now. And can’t walk as long and do all the things she could do before yet, but she is so patient with me. And told me she would bring me my pills and bandaids. So I have my own little nurse. And we cuddle and hug and she plays my bum as the drums again. All is well.

I also need to send a shout-out to Nick. He just took over parenting full-time for weeks and came for visits as much as he could with Arrine. I asked him if I owed him three weeks in a row with Arrine, and he assured me he wasn’t expecting that. :) Not having a single worry about Arrine’s care through all this was amazing support that no one else could have given me. Nick is a good guy – remember that Nick, no matter what anyone else says about ya!

So there you go. A post not all about me. But about the other super duper special people in my life. Which I am blessed and grateful for with each breath I take.

Don’t Get Me Wrong, I Am Effing Scared (My New Normal)

I am grateful for all of the lovely words of encouragement and support. I receive a lot of praise for my positive outlook and how I am approaching this illness with courage and strength and grace.

But through all that, I am still super effing scared. I am scared of the unknown and the future and what my New Normal will be.

“New Normal” is a term I started using after my mom was ill and passed. It really represents how your life can change so significantly, that you need to create a New Normal for yourself, because you can never go back to your Old Normal. And through this latest of life’s challenges, I have learned that your New Normal is always evolving. As mine is right now. I still don’t know what my New Normal will be like yet, and that is what I fear. In my mind, I am setting myself up for complete success – which I consider to be gaining back all the physical strength I had before, and more. Dancing and being active without any limitations. Being a mother without worry of becoming sick again. But I don’t know if that will happen.

So instead, I think I need to look at my New Normal each week. And then have it evolve weekly, instead of thinking months ahead. I am asked a lot, “How are you feeling?” And so for this week, this is my New Normal.

New Normal – September 11
Breathing wise I have no major concerns. My oxygen levels have been really good since leaving the hospital. I still find things like walking up the stairs to cause me to pause at the top and catch my breath. Or needing to take a few slower, deep breaths to feel as though my lungs are full. And I am more *aware* of my breathing. But otherwise, I don’t feel that is what is limiting me. I am being held back by the medication side-effects and recovering from the surgery. But, a week ago I couldn’t do stairs without holding a handrail. Today I can. A week ago I couldn’t go to the the store without my walker. Today I could go on a shorter walk without it. I still don’t have the strength in my legs to squat down and stand back up without using my arms – that is my next goal. Which will take more time than maybe some of the other progressions, but it will happen.

I am also super sensitive to any new potential symptoms that would show the vasculitis is spreading. I fear seeing blood after I use the washroom, as that may be a sign of it affecting my kidneys. I am worried about the swelling I now get in my knees is another indicator, instead of it simply being my body moving again and its reaction to more walking and working on gaining the strength back. I am more aware of skin changes, again, another place where new smaller blood vessels symptoms would show. But, I will say that I am getting better with not focusing on these as much as I remember doing so while still in the hospital. So, there is mental progress with this fear too.

And my body image is being challenged. My puffy face. The muscle mass I have lost. The definition of my waist. All things that do not affect my autoimmune disease, but they do affect me mentally, and I need to have my mental strength to keep working through this. I just don’t feel like “me”. And I need to change that old idea of what I should feel like.

Otherwise, my New Normal consists of not being able to fall asleep at night, then waking early than I’d like. But this allows me to get up and enjoy my kitchen in the early day, siting at the table, drinking my hot water with lemon and honey. Then I just do stuff around the house. Kitchen work. Laundry. Emails. Going through the huge pile of papers I have. Doing errands. Then I mostly rest in the afternoon. Most times I can’t sleep, so I read. And then I get Arrine and we have a great evening and start the cycle all over again.

Still no dancing or what I would want to do for exercise, but I am walking so much more now, and that’s better than a week ago.

For someone who loves to be in control, this is the worst. Feeling lack of control over your own body is excruciating. So instead of focusing on what I cannot control at the moment, I am doing what I can to set myself up for success with those things I can control. Appointments galore!! I have been to my chiropractor twice since being discharged and he says he sees improvement after only two sessions. Once he gives me the approval, I can start on massage therapy. I see my therapist next week to help me through all the thoughts and fears and emotions and ensure my head is where it needs to be. I had two spa treatments earlier this week. Teeth cleaning next week. I am creating my own body’s support system. And I am working on weaning myself off of the High Calorie High Protein diet they had me on in the hospital. Well, not the protein. But I defo developed a sweet tooth I never had before with all the cookies and pudding and ice cream they were feeding me. I am working on getting back to eating more how I did before I became ill. I am meeting with my trainer next week, just to talk and set up a plan going forward. I hope to attend some dance rehearsals soon, just to watch and feel that in my life again.

I know I can’t live my life in fear of the unknown and my health. But at the same time, I am unsure if I can just wave aside the fear as if it doesn’t exist. So for now, I am using the fear to draw my strength from. I am transforming my fear into determination to stare down and stand tall against and think positively about the outcome. For the mind-body-soul connection to be working together for success.

And I may not know what my New Normal will be next week. And that’s ok. I will reassess in one week’s time.

Murmurs of Song

*Written before I returned home.*

You come to learn the routine of your hospital unit. The nurses, the schedule, the cleaners and meal deliveries. And also the other patients and their families.

There is a patient here who is surrounded by her community. I will admit my ignorance to their cultural and religious background, but based upon my research, I believe them to be Hutterites. I would say there are never less than 5 family members here at a time, and I have seen at least 10 to 12 at once. I have learned that they have travelled from Medicine Hat, Saskatchewan and Washington to be with their loved one. Their eyes are welcoming when we pass, and smiles are soft, although that is all passed between us.

The other night, I was having a late night walk around the unit and passed the family room tucked in the back corner. I peeked in and saw the family gathered, softly singing in their own tongue. It made me stop. It made me want to go in and sit and close my eyes and let their love encircle me as well. But I met eyes with one of the younger men and did not want to do anything to offend and started walking again.

Since then, I have not been able to time another passing while they are singing, but I can still hear it in my head. And I listen to it again and again.

I took Arrine to the public washroom during one of her visits, and one of the family members was there too. She initiated conversation with me and asked beautiful questions about Arrine and my illness. She then shared her story of her sister, but I choose to keep that between us.

I admitted to hearing them sing and how it affected me. My confession to her brought tears to my eyes. She shared that her sister only finds comfort now with song and prayer.

And then it was time for me to return to my room and her to her sister.

To sing.

Drugs, Drugs, Drugs – Which Are Good? Which Are Bad?

I avoid drugs. Like I mean if I have a headache, I would rather get through the headache than take a Tylenol. My dermatologist knew to stop recommending additional prescriptions, because I wanted to avoid taking any additional oral mediation and kept refusing her suggestions, which she respected. We chose to treat my acne topically instead. However, I did agree to take the antibiotic minocycline (previously mentioned in the Diagnosis post), as I remember thinking, “This is just an antibiotic. You take these for any other type of infection. It’s not accutane or something else with equally known more significant side effects for treating acne.”

Well, my days of saying no to drugs is over. I am now on an intense drug therapy regime of high dose steroids. It has been stressed over and over how you want to reduce how long one is one steroids for, due to the side effects. They call them the “miracle drug”, however it can not be abused. So the plan for me is to take these drugs for the next four weeks. I will then see my lung specialist and assess how my body is responding to the treatment. Hopefully my improvement continues, and we can begin to reduce the dosage.

I know there will be those who disagree with my choice to take these drugs. Or question the risk/reward. And I will admit I asked Trisha if I should just take them without researching other possibilities. But the difference they have made in my health just in this last week, and my overpowering mindset to overcome, I know this is my path forward.

This is what I currently take daily, which is really a combination of the steroid, and then things to counteract the side effects of the steroid:

– prednisone (high dose steroid)
– septra (antibiotic 3 x a week to reduce the chance of infection due the immune suppressant from the steroid)
– calcium twice daily (steroid causes bone loss)
– vitamin D (to assist with calcium)
– multi-vitamin
– pantoloc (reduces acid reflux, as steroid will thin my stomach lining)
– Tylenol & Ibuprofen (3 – 4 times a day for surgery recovery pain control)

I bought a weekly pill case for am and pm doses to organize it all, as well as have set timers on my phone for reminders. I had all the time in the hospital to ensure I was on track each day with each dosage, but outside that routine now, I need that assistance.

So, why are these magical steroids so un-magical at the same time? Besides them not being the type of steroids to use for enhancing performance and I would get super jacked, here are the typical side effects and my experience to date.

– Puffy face = Yup. I feel I have this. And it is a huge lesson for me to let go of my vanity. Because I can breath. And bake cookies with my daughter. And did I mention I can now breath?
– Poor sleep = I do take longer to fall asleep now in the evening. And I wake up much earlier than I normally would. I really could sleep for 10 – 12 hours before, if I was on my own without Arrine. I was hoping my early waking was just the routine of the hospital, but once I have been home, I still wake around 7:30am, even having not fallen asleep until after midnight. I am in bed and tired for hours before that, I just can’t sleep. Arrine even said to me, “Mommy, you were out of bed when I woke up! And you are ALWAYS still in bed when I wake up and we stay in bed!” And this is true. I woke at 6:30am, lay in bed for an hour and finally rose at 7:30am. I also wake a number of times throughout the night, but before I attributed that to the pain medication wearing off, as I was no longer being woken during the night for it. So I do hope that as I recovery and feel less pain, the disrupted sleep will lesson.
– Increased weight gain and decreased metabolism = Huh. Well, defo since I have been home I eat all the time (but now with heartburn, which I have never had before). I am hoping it’s just the novelty of me being home and begin able to eat WHATEVER I WANT! But I really will need to be more conscious of this after I give myself a few more days of just eating. And eating. Actually, while in the hospital, they had me on a High Protein High Calorie diet, because I had lost 10 lbs in about 10 days. I have regained about 3 lbs, but I know that is all muscle mass I have lost. I can see how my body is different. And I can feel it. And I only want muscle back!!
– Mood changes or disrupted thinking = WHAT? Oh, leave me alone. Wait, no, don’t go!
– Thinning of the skin, weaker muscles = Gotta get pumping that iron again.
– Disruption of the body’s own ability to make cortisol = Cortisol is what the steroid is replicating, so my body can stop making it’s own, because the drug is doing it for me. This is why it is so important that I never stop taking the steroid, and the dosages will slowly be tapered off, to ensure it is done safely.
– Increased risk of developing stomach ulcers, diabetes, glaucoma, cataracts, hypertension and heart disease = Well, we can’t let any of these happen.
– Increased risk of developing serious infections = My world is now all about washing your hands like no bodies’ business, hand sanitizer, wipes and making people around me do the same. Don’t take it personally, but you are all dirty, dirty, germy peeps.
– Increased risk of developing osteoporosis and bone fractures = Hello calcium, my friend!

So those are the main ones. :)

I showed Arrine where I am keeping my pills, and explained why I was taking them all now. She showed me up with her pill safety already and we are good to go. She said she will not touch them because they can just make her sick. She only takes her probiotics in the fridge. So it’s good that we can share our pill popping together.

Drugs, drugs, drugs. Which are good? Which are bad?
Drugs, drugs, drugs. Ask your mom or ask your dad.

Or maybe your lung and rheumatologist specialists. They will probably know better.

Two Rheumatologists

Two rheumatologists walked into my room.

A few general questions were posed, and then, from the kind eyes and soft tone from the female doctor, “I have to now ask you a personal question. You are 36 years old. You have one child. Do you plan to have more children?”

Tears came to my eyes. “Oh, you are making me weepy.”

“I’m sorry, I didn’t mean to.” And I knew she really didn’t.

“I would like to have more children, but I am not in the situation to have any now.”

“Well, the question needed to be asked. Depending on the treatment, some of the drugs have the side effect of harming your ovaries.”

All I could answer with was a soft, “…ok.”

And all she could answer with was a gentle rub on my knee, a saddened smile and wishing she could say something different.

Two rheumatologists walked out of my room.

D-Day (The Big D)

Diagnosis. This may have been the most used word of these past number of weeks. And here is what I can tell you about mine. My diagnosis is that there is no agreed upon diagnosis.

After being transferred back to the U of A pulmonary unit after the lung biopsy surgery, I was told right away by the lung resident that I would be released shortly. That was late Tuesday evening, and surgery had been on Sunday. I expressed my concerns of being sent home without a diagnosis, there being no treatment plan yet, not to mention the issue of me being unable to actually live on my own at home. I hadn’t walked or showered or even made myself anything to eat on my own for almost two weeks. And I was still on about 5L of oxygen all the time.

Wednesday – still no final report. I asked if I could walk, but was told that Occupational Therapy had to assess me first (this happened the following afternoon and then no one could stop me!). This evening we did start the first intake of the high dose steroid. What was very convenient, is that both of the possible diseases would be treated the same way to start – steroid to reduce the inflammation in my lungs, and as well it is a slight immune suppressant. The idea is for me to take the steroids first and see how my body reacts to them. Ideally, I would see improvement. And then, dependant upon the diagnosis, the second agent, or drug therapy, would be added. Most likely being a more intense immune suppressant to then stop by body from continuing to cause the inflammation by fighting itself when it shouldn’t be. But again, it would depend on whether it was organized pneumonia or vasculitis. So tada! Treatment could at least start, even though no set diagnosis yet. [I plan another post about the drug treatment, because these roids are an entire other update.]

The rheumatologist resident who I really liked, Dr. D, stopped by. He indicated he was doing everything to get the pathologists to finalize their findings from the biopsy, as it was needed for the diagnosis to be made. He shared with me some good news – preliminary results showed signs of it being more likely the organized pneumonia, which isn’t systemic and would have a less intense drug treatment. This gave me a lot of hope. Also, that my blood work did not show the typical patterns that they would expect for a more specific autoimmune vasculitis disease. But at the same time, it was stressed that these are all preliminary findings. Between the lung and rheumatologist updates, I was told that we should have a diagnosis by Friday and be released.

Thursday – still no final report.

Friday – still no final report. I spoke with the lung attending physician whom I also really liked, Dr. K. She said that now I would most likely go home on Monday. I was told that Dr. K also asked the pathologist at the U of A to review the Royal Alex pathology report findings. So that was adding to the time it took to made a final report. Even though this was amazingly frustrating, I did appreciate the teams taking the time to really review and not make a rush decision, as this would affect my diagnosis and treatment plan.

Saturday – nothing. I did ask if the pathologist would even be working over the weekend. I was told they would be… but now more likely going home Tuesday or Wednesday.

Sunday – nothing.

*So in these days of nothing, I had both the lung and rheumatologist residents come see me each day, telling me there was no update. And that was pretty much it. I had began to express my desire to get a diagnosis and go home, as I was now on room air since Saturday morning all the time, even when showering and walking. I had started physio since Thursday and mentally was ready to be home again.*

Monday – still no final report. Ohhhhh, and I should mention that a new month started, so I now have an entire new team of residents and acting physicians. So yes, that means that I now am seeing an entire new team of docs. Dr. K is out and her replacement, Dr. M is in. Plus new lung residents and rheumatolgists. Did I make that clear? ALL BRAND NEW DOCTORS. But I met them all on Monday.

Tuesday – The rheumatologists told me that the Royal Alex pathology results are final! And it shows that I do NOT have vasculitis (yah!) and instead I do have organized pneumonia (kinda ya!). BUT, Dr. K still wanted the U of A pathologist to review the report, as organized pneumonia can appear very similar to vasculitis. It may take a couple more days.

Wednesday – The new lung resident explained that the U of A pathologist had reviewed the report, but now wants the entire team to review it together during rounds at noon. The plan is for me to still go home tomorrow. But the diagnosis needs to be made so the correct followup with specialists and a treatment plan is determined. She mentioned though that most likely I would be following up with rheumatology, so even though she didn’t specifically say it, I knew the good news from yesterday was over. That meant we were back to vasculitis and no longer organized pneumonia. Then the rheumatologists updated me with the same news – meeting at noon, although now they DO think it is vasculitis (as I now suspected). They would confirm with me later that afternoon.

At 4:15pm, the new rheumatologist, Dr. K* (different Dr. K, so I will call her Dr. K*), told me they still think it is vasculitis, but they need to hear from the lung team. Then at 5:00pm, the lung resident returned to tell me that there is still no decision on the diagnosis. The plan is that I will still go home tomorrow, and follow up with both the lung and rheumatology teams in about 4 weeks time. Until then, I am to stay on my steroids and return if I get worse or develop new symptoms.

This was the lowest day I had had since the surgery. I had spent over a week mentally preparing for a diagnosis. Because a diagnosis meant a plan. And I love plans. A decision would be made and we would know how to proceed. But I hadn’t prepared for there not being an agreed upon diagnosis. And the plan to be, “Well, we will see how you feel.” I don’t mean for this to be a dig at the docs, or simplify all of their testing and analysis and knowledge, but after all this build-up, I was extremely disappointed, angry, frustrated and even more scared. I had a few super sad and pity party hours. And then I had something inside me shift. And that can be an entire other post too. What I can say here, is that I went to bed with a refreshed mind set, and was ready for the next day.

Thursday – the lung team came to see me by about 10:00am. We talked about the plan after being released, and I expressed my disappointment and fear of there not really being a plan, due to no diagnosis. I was then told that officially on my discharge they are calling it “Minocyline Induced ANCA Vasculitis”. Ok. So what zee heck does that mean??

Well, minocyline is an antibiotic that years ago I had been prescribed by my dermatologist for my acne. In the past, when I would get a flare up, I would use the antibiotic for about 4-5 days until my skin would settle down, and then stop using it. But earlier this year, I kept getting more severe flareups, so we agreed that I would go on it full time. So I started using the the prescription daily, in hopes that it would be proactive and reduce the more consistent acne I was experiencing. I owe so much to my dearest friend, Trisha. Early in my illness, she was doing her own research. She actually learned about the possible side effects of minocyline and found case studies of it triggering vasculitis. We both thought this was unreal. And I began mentioning this to each new doc that I saw, however this was before I was even admitted on August 20th, and then early into my hospital stay. And although I mentioned it, it wasn’t something anyone focused on. Until I saw Dr. D for the first time. Remember? My fav rheumatologist? He was the first one who brought it up with ME, after I returned to the U of A after the surgery. Which made sense, because his specialty being vasulitis, he was more aware of the potential link. Again, reminding me that there is no way to confirm if this is cause, but it also shouldn’t be ruled out. Well fuck.

And ANCA stands for “anti-neutrophil cytoplasmic antibody”, which is an indicator in your blood work that shows signs of an autoimmune disease, and my blood work is ANCA positive.

So the diagnosis is really something like, “You have some sort of autoimmune disease, but we aren’t sure exactly what, or if anything triggered it, but we are going to go with vasculitis and hope it stays in your lungs.”

So are we still on Thursday? Yes. OK. So then after that chat in the morning, I waited until after 2:30pm for OT to come do my final assessment, and then I needed the official discharge paperwork. So I was finally released by about 4:30pm.

My dad took me to get my prescriptions and a few groceries, and then we got home, ordered pizza, had a beer and watched Law & Order: UK together and I was home for the first night. Again, a whole separate post for that.

So. I think that all makes sense, right?


Get every new post delivered to your Inbox.

Join 506 other followers