Body – Smarten Up!

I’m pissed off. I am pissed off at my flipping body for being a huge dork.

After seeing my rheumatologist two Thursdays ago and being at 10mg for almost a week, the swelling and new bumps started again. In my appointment, we discussed dropping the doses again, but when my feet told me otherwise in the following couple of days, I listened. This time I increased just to 15mg, instead of the 20mg that we did before. Looking back, I was pretty sure that the leg symptoms started when I was at 10mg, so I wanted to see if 15mg would give me the same improvement as 20mg would. I am slowly seeing less swelling, which I will take. It was a good experiment to see what level I really need to have to keep the erythema nodosum (EN) away. Conclusion = 15mg.

At my doc appointment, she explained that if I keep getting flare ups, we may need to discuss adding on an immune suppressant as we did before and then chose not to. But she said we weren’t there yet – that was before the second flare up happened. I think we are there now. 😦

Before, I was so hesitant to add on another drug, that has its own negative side effects, but now that I have physical symptoms and I am in pain, I am very open to adding on another medication layer, if it can keep the EN away and get me off the prednisone. I called my doc today and left a message with the update. I asked if I should try tapering one more time, or just give me more drugs…

And yesterday I saw my lung doc again. Even though I have been on an inhaler for the last couple of weeks, my lung tests still show signs of an obstruction. What this means is that when I blow out, I should be able to be blowing out 70% of my air in the first second. In one of the tests, they test me first without any medication. Then I take 4 puffs of an inhaler and test again. Before medication, I can blow out 66%. After medication I can blow out 73%. It’s an improvement, but the daily inhaler I take should have had me with better results than 66%. So, we are adding on more puffers!!! Another drug added to the one I am already taking. And hopefully next month there will be better results.

For the last few months, I have been really emotionally positive about my illness. I received good news from the Vancouver specialist. I felt that I really only had a huge “one time thing”, and I would reduce the prednisone and skip into the sunset. But recently, that doesn’t seem to be the case. And I am scared. And worried. And mad. And scared. Did I mention scared?

Body. This is me kicking you in the pants to smarten up. Did you feel it?

She’s Got Legs… (Sung to the tune by ZZ Top)

Wow. An entire month of not writing. I have been a busy bee. A busy bee with legs and feet so swollen, they couldn’t wear shoes!

So after that last post, I dropped my prednisone again and three days later I noticed my ankles were swelling. I called my rheumatologist again and left a message. I increased my prednisone back to 7.5mg, but still no improvement over the weekend. I decided on Monday I would call again, and if I didn’t get through to my doc, I would leave the message that I was going to emergency the next day. My feet were so swollen that I couldn’t point my toes, I was starting to get pins and needles feeling, which meant nerves were pinching, and shoes did not fit. Not to mention the constant pain that the swelling and inflammation bumps created. Lucky for me, her assistant answered and I got in to see her on the Wednesday.

When I saw her and lifted my dress to show her my legs, her response was, “Can I take a picture of your legs?! I promise not to post it on the internet.” She then went on to agree with my previous diagnosis of erythema nodosum. Then she asked if she could call her resident in, show him my legs, and test him. I agreed, so she did. He came in, took a peak, asked me a few questions and then said the same thing, “Erythema nodosum.” We chatted a bit more and then he said, “This is awesome!” To which I replied, “Yah….no….this is NOT awesome. But I am glad I could bring you some career excitement today.”

Now, to make things even MORE interesting, there is a lung disease that also includes this skin condition – sarcoidosis. Interesting that my friend Trisha came across this in her research and my doc mentioned it right away. She did say that my biopsy would have shown if this is what I have, but to make sure it wasn’t something that developed afterwards, she sent me for a chest x-ray and bloodwork to double check. Nope – not that.

Anyhoo, the plan was to try gout medicine for a few days, as it is a normal treatment for this, keeping my prednisone at 7.5mg because we have been trying so hard to reduce and get me off of it. But if I didn’t see any improvement within a few days, then I was to increase my dose to 20mg. She explained that if I had just come in only with this condition and not been on prednisone already, she would have prescribed 40mg, but again, we are trying so hard to get me off this darn drug. So she admitted she didn’t know if 20mg would even be enough to make an impact. So, away I went with a gout prescription and hope. {She did tell me the pharmacist would try to tell me I had gout, but I was to correct them. This happened, a few times. To the point I just accepted with the pharmacist that I had gout.}

Three days passed with no improvement. I told myself if I woke on Saturday morning and I still had swelling, I would increase to 20mg. Which I did. I had a little cry and then did. Gah! SO FRUSTRATING. February. I was told February. I know that things change, but having that mental goal of February and now we are in May is really sh*tty. But, you know what? By Sunday morning my swelling had gone down significantly. That fast. Prednisone. The miracle drug that cures one thing and makes you horrible in 10 other ways. Anyhoo. Feet are fitting into shoes again. Success.

This was all happening right before our HUGE CCB show on May 14th. It brought back so many memories of my initial days of illness before our show in August that I ended up missing, you know, being in the hospital and all. So besides the physical pain I was constantly in, I was worrying (trying not to worry) that I wouldn’t be able to dance again. If I didn’t have the show, I probably would have given the gout medicine (I don’t have gout) a few more days. But time was against me.

So, the swelling was almost all gone and the bumps remained. But I could handle the bumps and soreness from them. As long as I could dance. Which I did.

The good thing about increasing my dose this time, was instead of staying on the higher dose for 4 weeks at a time, I only needed to try one week! So as I write this, I am already back down to 10mg a day. I will admit I am worried and hypersensitive to my legs again, as this was the dose last time the erythema nodosum started. There is still almost no swelling, but a few new bumps have appeared. My legs now show more of a fading purple mark where they bumps were, instead of being bright red and swollen. I am hopeful that no additional ones will start and in a few more weeks the discolouration will be gone.

I went to see my doc for a follow-up today, but she was running behind, so we had to reschedule for tomorrow as I couldn’t miss Arrnie’s hip-hop performance at school. I don’t expect her to say much, just that it’s good that we are seeing improvement and that we will continue tapering and monitoring.

If you Google erythema nodosum, that was pretty much me. But for your viewing pleasure, I will include pics of my very own legs! (This pic doesn’t due them justice…)

Leg Pic

I Have Fatty Shins

So, it’s clear I get the weirdest and most random health issues. My latest one? Inflammation of my shin fat. Yes. Shin fat.

A few weeks ago, I found a small, hard lump on my calf. The skin became tender and red in the area and I thought it was maybe just an ingrown hair? But then another one appeared on my other leg under my knee. They looked like bruises, but there was a significant bump with each one. So I made an appointment with my regular doctor and by the time I saw her, there were multiple bumps all over my legs. They are sore and painful and super annoying.

Diagnosis? Erythema nodosum. Inflammation of fat tissue on your lower legs. They can be connected to some medications, pregnancy, strep throat, and cat scratch fever. We ruled out all of those (kinda sad I never had cat scratch fever), so instead, I have them for no reason, which is also a reason.

There is no treatment, and they should go away on their own within 3-6 weeks. Even though the doc I saw said there would be no connection to my lung/vasculitis?? disease, I still called and left a message with her office, letting her know of this new symptom. Just in case.

I also dropped my prednisone down to 5 mg, starting tomorrow. I have been at 7.5 mg for two weeks and I still feel good, besides my fatty shin problem, so I am going down again. Wish me luck!

Those Darn Lungs

Turns out I may have asthma. This is what my monthly lung function tests are now showing. We are going to wait another month and test again, and if the results still show signs of it, we have a couple of options. We can either start treating it right away with inhalers, or I can have a more detailed lung test done at the University to confirm the suspicions. Heck, I will take asthma over vasculitis any day.

Back in my uni days, I was diagnosed with seasonal asthma and had inhalers, but it was never horrible, and just kinda went away on its own. And even now, I don’t actually feel any symptoms. Because of that, I questioned if I needed to even treat it. But my lung doc explained that if it goes untreated, it can cause long term damage from scarring and become worse. So, I guess we should treat it.

Other than that, the tapering of the prednisone will continue, and I will see my lung doc again in a month.

That’s it. These health updates are getting quite boring now. But maybe that is a good thing. 🙂

Cha-Ching

I can’t remember being stressed out about finances, as much as I am now. The economy is not great. We all know that. I first really experienced it when I was laid off last November. I consider myself extremely blessed that I found work so quickly and started working in February, and accepted the 18% salary decrease. I was grateful to be working and enjoying it. I made the monthly reduction work these last couple of months with a decreased budget, but I was notified last week that starting May 1st, my hours will be reduced to 4 days a week. This is to avoid having to do complete layoffs. There goes another 20% salary reduction.

Yesterday I was looking at my budget again, crunching numbers, and getting some advice from girlfriends on even more ways to save. I am open to suggestions! Trisha noted my monthly Book Budget and suggested the library instead. To which I replied, “There is always enough money for books.” This was something my mother said so often, that it has become a part of me. We both find/found joy in not only reading, but owning books too. It’s like each time another book is placed in our personal library, and angel gets her wings. How can we deny angels their wings?! However, I have cut that monthly budget down to $7 a month. That will still allow Arrine one book during our ritual of walking to Whyte Ave and then going to Chapters. I can use the library. J

I am trying to counter my anxiety over this by focusing on the positives from it. An extra day at home will allow me to do more of the daily household chores and upkeep, instead of during my time away from Arrine or when I am with her. It will also give me more time to find cost savings, like being able to go to various grocery stores for the best deals. I can sunbath more in the summer while reading my book from the library. And maybe find time to pursue my editing interest.

But for now I need to put some of my plans on hold, which is hard mentally.

I am thinking a lot of my parents and how things were when we were growing up. We never had a lot of money, but they always found ways to cover dance and golf costs, which I know are very expensive. And I now can appreciate more, the sacrifices they would have individually made for my bro and I to golf and dance. So I thank them.

Even though I need to work on reducing my stress related to this, I am still very joyful and content. I’m trying to look at it as a fun challenge. ….yah!…

Self Diagnosis – BOOP de Boop

I have decided to self-diagnose myself based upon various sources: the interweb, my friend Trisha who is an amazing researcher, my symptoms (or lack there of), and findings from the Vancouver pathologist.

Throughout this entire journey, we have struggled with the unknown. Mostly because there was no unanimously agreed upon disease from the lung biopsy surgery. The pathologists here, three of them, indicated there were “signs of vasculitis”, but they couldn’t/wouldn’t make a definite call, one way or the other. Since the beginning I was also told that another option for what was ailing me was COP, or cryptogenic organizing pneumonia. The name is misleading, as it really isn’t pneumonia in the sense of an infection. But it affect your lungs (obviously), and cryptogenic means that the cause is unknown. Ooooooo…..

Lucky for me, both COP and vasculitis are first treated with steroids, which is why we started on that medication right away. But since the vasculitis is a known autoimmune disease, additional medication would then be added as the steroids are tapered, with the idea of stopping your body attacking itself again. These are the super scary drugs I didn’t want to take. Which is where the Vancouver specialist came into play. He was recommended to me by an old friend through community theatre (THANK-YOU). This doctor’s father “found” a specific type of vasculitis, and it was even named after him, so he knows his stuff. He was amazing. Super receptive. Offered to look at my files immediately. And once he had my information, it only took a few days for him to get back to me. In his opinion, I do not have vasculitis in my lungs. He thinks my biopsy shows COP. He also agreed that my kidney biopsy was normal, although my bloodwork that are indicators of autoimmune diseases are confusing. Which I knew from previous rheumatologist appointments.

There are two names for this rare disease: COP or BOOP (bronchiolitis obliterans organizing pneumonia). BOOP sounds neater. Say it out loud. Don’t you agree? So because of all of this, I am self-diagnosing myself wth BOOP!

He stressed that he couldn’t give me a definite diagnosis, but did say that minocycline has been shown to cause many types of lung diseases, and is the most likely culprit.

So this morning, I met with my rheumatologist and shared all of this with her. She was on board. The plan is to continue reducing my prednisone by 2.5 mg now and just see how I feel. If I can go down 2.5 mg every two weeks, without any symptoms returning or new symptoms, then I am to just keep reducing. So next Monday I will go from 10 to 7.5 mg a day, and keep my fingers crossed. This will be the most likely time that symptoms may return, as we get loooooow, so I am focusing on that not happening. I will now do my bloodwork once a month and see her again in 3 months. We also talked about my supplements. I am on super high doses of calcium, to counteract the bone density sucking of the prednisone, but like SUPER HIGH, because it was never reduced since I started at 70 mg. In her opinion, I should be getting enough calcium in my natural diet, as opposed to supplements. But said I could reduce my daily supplement by 4 times, as I normally don’t eat a lot of dairy. She mentioned a study that linked heart disease and stroke to high doses of calcium, which Trisha also noted!! And she also told me to increase my vitamin D from 1000 to 2000 units a day. She likes vitamin D supplements better than calcium.

So, I see my lung doc again in a couple of weeks. The lung capacity test can show signs of any potential concern as we decrease the prednisone. Bloodwork monthly. And then see the rheumatologist and kidney specialist in the summer for follow-up.

I am very hopeful I have BOOP. The chances of reoccurrence are there, but much less than had I self-diagnosed myself with vasculitis. And the unknown still encircles me, but at least for right now, there are no additional signs of anything new. I can focus on my recovery.

BOOP!

My Community

It will be two years this July that I bought my house. I love the area, but it really wasn’t since I was discharged and Arrine started school, that the sense of community really heightened for me.

I LOVE that we now live so close to her school. I LOVE that we live so close to my work. I LOVE that Whyte Ave and downtown are super close for me. I LOVE that I have my go-to places for groceries and errands. It truly has added to my overall joy and contentment with life.

I love always improving things around my house. I am really looking forward to the spring and summer, and spending more time in the yard. As last summer that didn’t happen for me. This summer, watch out flower beds and garden!!!

I feel at home.

My Health Today

It’s been a while since I wrote a health update, so here is a quick recap.

  • Lung wise, I am feeling good. I currently don’t notice any concerns with my breathing or lung capacity.
  • I still have muscle soreness from my lung surgery site, and even my kidney biopsy site. I notice it is mostly activity dependent and there is still discomfort and tenderness if I wear an underwire bra.
  • The feeling in my left armpit is coming back. I’ve noticed the sensation coming and going, which I think is normal for nerve damage repairing itself.
  • I am on my last week of 4 weeks at a 10 mg prednisone dose. I hope when I see my rheumatologist at the end of this week, we can decrease again.
  • The side effects of the prednisone are reducing, as the dose tapers off, which is great. I can’t remember the last time I had heartburn or my food tasted metallic. And part of that may be that I now avoid certain foods and I am used to the taste. But I am sure the reduced dose has helped. I have thought my moon face was reducing, and some of my friends have commented the same. WAHOO!! A couple of weeks ago I wore my sunglasses and the bottom of the rims didn’t touch my cheeks as they had before. BOOM! The chest and back acne is just recovering from redness due to the previous flares. But now the acne has returned to my face – decided to not take the minocycline though. Ha! I am also sleeping really well.
  • Mentally I’m still struggling with the time it is taking me to regain the strength I had before. It has been 7 months since I was discharged, and before I figured I would be back to before in about 6 months. So that timeline has been extended and I am working on not letting it mentally bring me down.
  • I finally had to go to my family doctor’s office to get my medical charts for the Mayo Clinic. The Mayo Clinic emailed me, letting me know they were still waiting to get my information, which is when I followed up here and found out the office mailed it regular post to the states, and not couriered. When I went in, I asked to speak with the office manager so she was aware of this super frustrating situation, and she was very receptive and understanding. She also said, “Thank-you for being so calm, I know I wouldn’t be.” To which I replied, “Oh, I am raging on the inside. But I know expressing that will not be productive.” So, the Mayo Clinic has my records now, and said that I could set up an appointment with their pulmonary department. I am going to wait and see how  I feel after my rheumatologist appointment this week before deciding how to proceed with that.
  • I have a few other non-lung related health things I am dealing with. I tore my hamstring around Christmas, and even with visits to the chiropractor, it is still very sore and tight. I also have a pinch in my upper back/shoulder, and now the top of my foot is sore and tight. All things the chiro is trying to fix.
  • I chatted on the phone with the Vancouver specialist, and he was able to clarify a few things. I am still hopeful about his outlook on things. Again, I will share once I speak with my rheumatologist.

Overall I am feeling well. I definitely get tired more easily, but I explain it that maybe it’s just me getting older…

I am busy with burlesque and rehearsing for our show in mid-May. I don’t see my girlfriends as much as I want to, but I know we all are in very busy times of our lives right now. And I am hoping that will shift a bit for all of us in the spring and summer. I am still really enjoying my new job. No complaints there. And I am continuing on the mental / habit changes I have made since being out of the hospital, and that has really helped maintained and grown my overall happiness.

I’m alive. All is good.

Lung Fung Update

I saw my lung doc this morning. I was excited to see him and do the lung function test, as we didn’t do it last month because of being sick at the time. The lung testing is a great way to pick up on any indication that my symptoms are returning, before I start to feel the symptoms.

There was a blip in my testing. The test that shows how much air I can blow out in one second, which is represented by a comparison to average percentage, decreased. Today I was at 86%. November was 90%, December was 82%, and January was 106%. They call this a sign of obstruction. I asked if that meant inflammation, and he said no. It’s more an indication of asthma. And he explained it like this. Prednisone will reduce the symptoms of asthma. Because he had no testing results of me before I was on high doses of prednisone, he doesn’t have a normal baseline to compare me to. So I could have had signs of asthma before, then the prednisone helped, and now that we are tapering the prednisone, we are seeing signs of the asthma. The good news though, is that he doesn’t consider this a big enough concern to change my treatment. However, he did caution that now we are at the 10mg of prednisone, this is a common time to see a flare up. So, I will see him again in a month and I have a standing order chest x-ray I can go get, if I start feeling worse. Oh, and my lung volumes are ok, so that is promising too.

Another good note, is that my creatinine level on Monday was 89, so back in the normal range. Kidneys have been behaving for a while now.

I am assuming that my decision to not take the Imuran is ok with my rheumatologist. I have called her office and left message with my decision, and never heard anything back. So that is the plan, until I see her in early April.

I also already heard back from the specialist in Vancouver. I am still processing his thoughts, and need to do a bit more research and clarify some things before I go into more detail. I am super grateful for his expertise. And the Mayo clinic said they haven’t received my information yet, so I need to follow up with my family doctor’s office today. Wahhh wahhhh.

Happy Friday

 

New Parenting Low

Last night was one of my lowest parenting moments. On the bright side of things, I can’t remember the last time I felt so devastatingly horrible, so that is encouraging.

It was stage rehearsal for Arrine. One of the information sheets I received from her teachers said that it was regular dance attire; so no costumes. Since I didn’t get any information from her other teacher, nor did the email from the studio specifically say that costumes were required, I assumed that was the case for all her classes. I assumed wrong.

When we showed up at the theatre and I saw some girls in their costumes, I first tried to tell myself, “Ok, maybe just the older girls are supposed to have them. Or specific dances.” But it was soon obvious that every single other dancer had their costumes on. Arrine was able to do her first dance, because there was one other girl who also didn’t have her costume. But while waiting for her next number, Arrine realized that she was the only one without her costume. And that’s when the tears began. Even with me explaining to her the situation, to an almost 6 year old, the only thing that would fix her sadness, was her costumes. I thought of who I could call to bring them to me, but there was no one. And even if there was, I also tried to tell myself, “This is a good lesson for her. To carry through even though things aren’t going your way.”

I couldn’t even get her to stop crying. Backstage she was hyperventilating and telling me she was too scared to go on without her costume, because everyone would see her without it. Two of her other teachers tried to help settle her down and tell her it was ok and offered to go on stage with her. But she wouldn’t accept their offers. The studio owner suggested I try to go on with her, which I did, that also didn’t help. By this time, I was crying too. From guilt, from my heart breaking for her. For knowing I was the cause of her sadness and her not being able to dance, when she before she was so excited to get on stage.

Some encouraging words from others were, “It’s ok that you forgot your costume, that happens to lots of dancers.” And on the inside I was screaming, “I DIDN’T FORGET. I WAS TOLD WE DIDN’T NEED THEM!” But at the same time, I feel like I should have questioned that, and known better.

We didn’t even stay for her third dance. We just packed up our things and left. She settled down about halfway home. Although I know I was crying harder than her at this point. I told her we could choose a special day to wear them at home and she replied, “But my teachers told me I can’t wear them at home.” And that made me feel even worse; this little child, adhering to her teacher’s instructions, even though she longed to wear her costumes.

Bedtime was our priority. We had a bath and I told her I would go to bed when she did. And I did. I did not want to be awake for any more of that day.

There were so many thoughts and worries I had last night, and still do. It bothered me that Arrine is such an amazing kid and so well behaved, but in this instance, an entire theatre saw her at her lowest, and not knowing the details behind it, would have made their own conclusions or judgments. I worried this would be a moment that affected her current love of dance. On our way to the theatre, I asked her if she would be interested in doing a solo next year, and she said she was. I haven’t brought it up since this costume incident, but I worry that it will affect her going forward. I wonder if this will be one of her childhood memories, and desperately hope it isn’t.

When we talked about it during the bath, she admitted she was a teeny bit upset with me, but still loved me and forgave me. And we talked about how tomorrow would be a new day, and we could start it being excited for our next dance classes, next Monday.

It’s moments like these when I feel the loneliest. Arrine’s dad is an amazing dad and co-parent, but it’s not his roll anymore to support me emotionally in times like these. I would have loved to have had someone to first call on to bring me those darn costumes, but also, to just have someone I could share this all with once I got home, and just been given some words of encouragement. Or even just a hug. A hug would have done a lot last night. I also miss my mom more too. I would have loved to have been able to call her. And ask about times she felt she had messed up. And heard her share some insight and experience with me. Oh, how I long for that…

However, I did get some lovely support from Anne Marie, who is a dance friend and teacher at the studio. She texted me later to ask how Arrine was doing, and that meant so much to me. And I sent a text to Arrine’s former teacher, Shannon, who helped backstage. I am grateful for having such kind people in my life, and Arrine’s.

I am still very emotional about this, and weepy while I write this. Anne Marie reminded me there will be many more of these low parenting moments, but we can’t be so hard on ourselves. And not be bothered with what others are thinking, as it is on them for judging if they are. I know it was an honest mistake. I know I didn’t mean for this to happen. I know it’s not Arrine’s fault for her behaviour last night. But still knowing all of that, seeing your child so sad and upset because of something you did, is one of the worst feelings in the world.

Last night was not good. It was horrendous. Today is a new day. But it’s hard to leave yesterday behind…