Monthly Archives: November 2015

Normal But Still Fairly Moderate

20 Friday Nov 2015

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I had a good lung doc appointment this morning.

My lung function has improved since last month and I am in the normal range for my gas exchange!! Last month I was at 76%, which was still on the low range and potential for concern. But today I was at 88%! Because of this, he is decreasing my prednisone from 40mg to 30mg a day, even though I have only been on 40mg for two weeks. He still considers the 30mg a “fairly moderate” dose, but it’s still less than 40mg! I am pleased.

The thing I am sad about, is that I have to stop eating/drinking Shakeology. My dear friend taught me about it, and because of its protein content, it was the perfect breakfast for me when I was really focused on my training. But she cautioned me that it has  an immune booster, astragalus, in it and wanted me to be aware of it. Lung doc says to lay off the shakes until I am off the prednisone, and then we can try reintroducing it.

As for the nose, the nose doc gave me some ointment to help with the nosebleeds, and it has really helped. I have only had once since I saw him on Tuesday. And now we just wait for a date for the nose surgery. And I will see the rheumatologist and lung doc again in a month.

Today was a good day.

No Nose is Good Nose

17 Tuesday Nov 2015

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I was really excited for my nose biopsy today, but yesterday realized that I was actually quite scared for it. Because it meant that I would have an answer (well, maybe). And answers can be scary.

But, it never happened today. I met with the ENT specialist and he took a look with his camera. It was really interesting to see my nose enlarged and on the screen and, well, all bloody.

He explained that my nose actually looks quite healthy, but given my recent health history (he said he spent 30 minutes reviewing my file before coming to see me), he wants to do an in-depth biopsy. So instead of the plan to do it today, with local freezing and get a sample closer to the exterior of my nose, he wants to get up in there!!

This would require me being put under general anesthetic, taking a larger sample from deeper in my nose, giving them more to analyze and a better sample, and then inserting disposable packing in my nose for the recovery.

But to do this, I was given a form that I needed to get to my rheumatologist to fill out, then send to back to the ENT dude, and then the surgery will be scheduled. So I did that right afterwards…and now we wait.

I did ask what to expect for turn around time for this. The ENT doc said he wants me booked “right away”, but when I spoke with his nurse, she said best case would be another month.

So I remain ignorant to my health for now…

Friday The 13th

14 Saturday Nov 2015

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Friday was a double doc appointment day for me. First I met with my therapist – all good on that front. We mostly talked about my work situation, but he did ask how I felt I was coping with EVERYTHING. And I said, “I think I am doing quite amazing with it all.” And he agreed. So mentally we are still on track.

In the afternoon I met with my rheumatologist. She said the same thing about the next step of treatment as she did at the last appointment – we need to have the nose biopsy either support or not-really-support vasculitis, before a decision is made on the chemo. She commented on how hard it is to get an ENT referral and then said, “Let’s try calling right now.” She picked up the phone and made a call. She was directed to another office. And told me that she had never done this before. Then with her second call, name dropping herself each time, there was some back and forth and then, “Yes, she’s sitting right here with me.” And then, “Can you make next Tuesday?” And I said, “Yes! I will make it work.” And done. Biopsy is scheduled for next Tuesday. Like gosh. After all that. And then she said, “I have never done that before! Good to know I can.”

So the plan is still the same – biopsy, then get the results and decide based upon the results. And the good news related to that, is that we talked about the “chemo”. She explained that the doses are less than what you would use for traditional cancer treatment, and the side effects are not as severe. There is still nauseousness and fatigue and mouth sores and potential liver and kidney issues, but she explained that some people are on these doses for decades. Oh, but alcohol would need to be limited – flip. But still, it was much better than I was thinking. I would get a dose once a week, either injection or orally, however injections are shown to provide better results and have less side effects, but we didn’t speak to those details yet. I am just pleased that we dispelled some of my misconceptions about the possible outcomes of the chemo drugs.

She also said that she would recommend reducing my prednisone from 40mg to 30mg, but we will wait until my lung specialist appointment next Friday to see if he agrees. And she ordered me standing blood work, which means I will just go for routine blood and urine, to ensure we are watching all my levels of interest. I am super pumped about this.

But, she is a bit concerned that I still have this chest cold. And hopes it’s not a sign of my lungs still being compromised somehow. For some reason I am not concerned, because I know Arrine has had a chest cold and cough for months now, literally months, and I have it now too. But now I am concerned that I wasn’t concerned but the rheumatologist is concerned. I am sure it’s fine… 🙂

But the big kicker that happened, was when she was reading to me the letter that the lung specialist wrote after his last appointment with me, and she paraphrased, “Well, he isn’t recommending the kidney biopsy right now, so that’s good.” And on the outside, I replied very calmly and as if I already knew, “Oh, ya, that’s good.” And on the inside, I was screaming, “KIDNEY BIOPSY?? NO ONE MENTIONED THIS TO ME BEFORE!!!” Apparently the lung doc was considering more surgery to biopsy and test my kidneys, but fortunately the second round of blood work showed improvement of my levels, so the biopsy was put on hold. So, we will just keep monitoring that, and hope that it they stay in good ranges. We will find out in a couple of weeks when I get my blood and urine tested again.

So that’s it for the health update for now. Lung specialist next Friday and we will go from there…

Cabbage Patch Kids, Growing in the Garden

10 Tuesday Nov 2015

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Whenever the doctors would talk to me about prednisone and its side effects in the early stages of me taking it, one of the first things they would mention is the “puffy face”. And I remember thinking, “Yah, ok. Puffy face. Whatever.” But no. When they said “puffy face”, they meant PUFFY FACE!

I really didn’t see the effects of the growing cheeks and neck until about two days after I was home from the hospital. I started on the 70mg a day on Wednesday, August 26th, so it was just about a week and a half being on the medication before I began to see the physical changes of the face beginning to mutate.

At first, my one bestie commented, “It just looks like you have cheek implants! People pay a lot of money for their cheeks to look so nice and full.” But by early October, when my other bestie saw me for the first time she exclaimed, “Oh! You look like a Cabbage Patch Kid!” Isn’t it great to have friendships where we can say things like that to one another?

I am extremely self-conscious of my face and neck. Extremely. I know people look and question. Whether I knew them previously or just random people in public. And it is so hard. I know I need to let my vanity go with this, for so many reasons. Such as the medication is keeping me alive, so that should take precedence over what my face looks like, right? And is a puffy face the worst it could be? No. There are so many other people that have more serious physical disabilities/challenges/issues than I do. And it won’t be forever (knock on wood). Once I am off the prednisone, I have been assured by everyone that the puffiness will go away with time. Of course, no one can say how long it takes to reduce the puffiness.

But here is my rant. I will say these things once, expel them from my thoughts and not complain about them again.

· It impairs my line of sight. It does! When my face is straight on and I look down, whether it’s at a book or the keyboard or my phone, my cheeks are so big that I can see the tops of them.

· My glasses and sunglasses are no longer comfortable. They hit my cheeks and feel spread out on the arms.

· My increased neck impedes my ability to actually tuck my head down towards my chest. Are you wondering when I need to actually do this movement? LOL There are a number of stretches I like to do that needs my head tucked down like this, as well as lying in bed and reading.

· It’s uncomfortable to smile, because it makes my cheeks even bigger. And I like to smile. A lot.

· But the worst is just the pressure I feel. All. The Time. In my cheeks mostly. I can feel the skin stretching and the tightness and the slowly growing of the face at all times. It’s like a tingling sensation that never goes away. Just a constant reminder of how huge my face is growing.

Now that my dosage is being reduced, I really do hope to start to see some decrease in my face too. But I am not sure if it will work that way, or if I need to be completely off the steroids before I see any improvement. I would like to think the tingly feeing is not as noticeable now, but it might just me getting used to the sensation and being part of my New Normal. I have taken a few pictures of my face over the last few months to try to document this. Maybe one day I will feel up to comparing them all and sharing. 

The puffiness is actually called Moon Face. The Wikipedia definition is: Moon facies,[1] or moon face,[2] is a medical sign in which the face develops a rounded appearance due to fat deposits on the sides of the face.[3] It is often associated with Cushing’s syndrome[4] or steroid treatment (especially corticosteroids), which has led to it being known as Cushingoid facies (“Cushings-like face”).[5]

The prednisone I am on is a corticosteroid, which releases / creates high doses of cortisol. Which then causes these lovely fat deposits on my face and neck, and sometimes the upper back too. I haven’t been able to find why this actually happens. Like on a molecular and body science level, why it chooses your face and neck for the fat deposits. But I would like to find out, so I can work on altering the science behind the prednisone, and have the fat deposits redistributed to my lips, breasts and butt. The places you DO want fat deposits.

I’ll keep you posted on this. After I patent it of course.

40mg Is Where It Is At

07 Saturday Nov 2015

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I think I am finally seeing a decrease in the side effects from the prednisone! It’s been just over a week that I have been reduced to 40mg, so I am sure I am now seeing some improvement from the reduction to 50mg too. But here is where I am at with my various health issues.

Sleep
For a few night this week, I have been in bed before midnight, and it has been amazing! Well, amazing from the perspective that I know getting a good night’s rest is needed for my recovery, and just feeling like I am getting back to a more “normal” routine. But I did kind of liked my Superwoman ability to only get about 3 – 4 hours of sleep a night and still be super productive and function. There are still nights where it is closer to 1 or 2am when I am getting into bed, but it’s encouraging that there are nights when I feel that I want to get into bed before midnight and my mind will allow it.

Skin
The back and chest acne breakout is still there, but it’s just healing now. I haven’t had another flare up, which is great too. Although now I am starting to see some more acne on my face, which I expected as the prednisone dose decreased. So I may need to start seeing my dermatologist more often for non-pill treatments. I am still getting the microderm, but there is also the blue-light treatment I may need to do on a more regular basis.

Knees & Nose
So the knee swelling and nose bleeds have seen improvement too?? It’s just so weird. I still get a bit of swelling, but nothing like before where I couldn’t even bend my knees totally. Or actually see the swelling. And the nose bleeds are only maybe once every 3 days now. My only guess is that these were symptoms from the prednisone?? And now with the reduced dose they are seeing improvement? I guess that’s what I am hoping, instead of them being the other possible signs of the vasculitis.

Surgery Site
I can’t remember the last time I took Tylenol or Ibuprofen for the pain. Before I had the bottles left out on my counter for easy access, but I put them away a while back and haven’t needed them since. It’s more that I feel the tenderness after I have worked out my core somehow. But yesterday I got to the gym for leg day, and afterwards I tried to do sit-ups, as I would have before, but my surgery site was too sore for sit-ups, after doing my squats. So it will just take time to heal, and I need to remember to not push myself (EVEN THOUGH I WANT TO)! And I am also getting feeling back around my breast and under my arm. Which is a weird sensation, though welcomed.

Eating
Things seems to taste a bit better these days. And the intense cravings are starting to decrease. Some are still there, but the inability to “say no” is decreasing. But the metabolism being decreased and the appetite being increased by the medication is still there. And I wish that would just take a hike. And burn a ton of calories while hiking away.

Work
A few weeks ago we increased my hours from 20 to 25 hours. And then last week I worked 27. It was ok. My schedule has been getting Arrine to school for 8:30am and then I head straight to work. The plan for hours is to be the same for the next, and my last, two weeks of work.

So what else? Still no word on the appointment with the nose specialist for the biopsy. I see the rheumatologist next Friday and then the lung specialist the following Friday. Overall I am feeling better from decreased side effect symptoms, but I really want that darn nose appointment. Breathing is still more laboured when doing physical activity, but I just work on being aware of it and work on controlling my breathing pattern more. I still have a chest cold. Arrine and I have had it for weeks. Months? So the coughing and phlegm is annoying. And I am going to ask the rheumatologist her thoughts on that spike in my blood work, indicating concerns about my kidneys, as well as the increase leukocytes too, as I have read it can be a sign of a kidney infection too.

I think that’s all I got!

Home For The Holidays

05 Thursday Nov 2015

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No, like I will literally be home for the holidays. I got laid off.

The company I work for has an extreme shortage of work. I have known this for over a year now. Layoffs have been happening for quite some time and the morale has been very low. The project I am on, was originally scheduled to be done in early September. Added scope has lengthened that into November and now additional work until February. I always knew that when this project was wrapping up, we would need to find another project for me to move to. But again, I was naïve to think that I wouldn’t be laid off. When I started here, just over two years ago, there were over 30 project managers – now there are 5. And I kept being told, “You are a key performer. We want to keep you.” But when it comes down to it, the cash flow of a company takes precedence over human factor. 

When I returned to work, I was told I would be on this project until November, something would be figured out for December and then hopefully there would be new project work in January. So when I was called into the Director of Project Management Resources’ office on Tuesday morning, I was completely shocked when she said she was giving me working notice (I had to ask what she even meant – that means “we are laying you off”), instead of talking about what new work I would be given. Clearly decisions were made without me, and without notifying me of the change, until I was given this news. But, as I said, this is a business, not a friendship circle. 

Here are some key things I have quickly learned:

· A company can lay off an employee if they are on disability or medical leave. I was shocked to learn this could happen. But it can, and it obviously does. So not only will I not be able to get the rest of my time on disability, I will also be losing my benefits, which most significantly, covers the costs of my medications, which average about $180 a month.

· A company can either give working notice OR severance. The length of time you have worked for the company, dictates either how much notice they need to provide you or number of week’s pay. I was notified early, this past Tuesday, with a formal notice coming to me on Friday, making my last day on Friday, November 20th. By doing this, I am not entitled to any severance pay. Had they waited and just told me on the 20th that that was my last day, then I would have been entitled to the two weeks additional pay. 

So now what? I don’t effing know. I know I am still in shock. And trying not to just react haphazardly to it all. I need to really sit down and organize what I need to do, not only from finding work, but figuring out how I will pay my mortgage in December and hopefully not January too, or February. As well as what this means to me in an overall life event significance. I kinda feel like it’s the universe forcing me to make a drastic change, but I don’t know what that change is yet.

Universe? For once, can you just show me what I am supposed to do here. I would really appreciate it. And send you a lovely thank-you card.

READ YOUR PRESCRIPTION WARNINGS!!

04 Wednesday Nov 2015

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Ummmm. It happened again. 

The additional blood and urine testing that I had last week to double check my kidneys showed increased leukocytes, which the lung doc thought was indicating a bladder infection. I wasn’t experiencing any symptoms of one, but he thought that maybe the other antibiotic that I was on would have lessoned the symptoms. So to be safe, he prescribed me an antibiotic to fight this potential bladder infection. 

So la dee da, yesterday I went to fill the prescription and took my first dose last night. Then I read the information that came with it. Look at what I highlighted. Can interfere if you’re taking prednisone?? Increased swelling of the knees?? I have that already. How will I know if this is negatively affecting me???

So, I never took the next dose this morning and called my doc instead, indicating my concern over this medication and possible complications. 

Final decision – I am not taking this medication anymore. 

You are your own advocate. Educate yourself. And read!! 

  

Testing Testing! Can You Hear Me?

04 Wednesday Nov 2015

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This is the first post I am attempting to make after setting this website to Private.

I want to clarify that I still intend to write, and want you all to read what I am writing! It’s just that for the time being, I need to have the website not accessible to open internet searches.

I have added a few of you as “Viewers” with the email addresses you provided, so I hope that has worked.

These posts *should* still get shown on my Facebook feed, but I am guessing that when you click the link, it may tell you that the site is Private. If so, and the option is there for you to request access, then do it! And I will approve it.

My intent isn’t to be all secretive and not explain what is going on, but I will once I get this Privacy issue all sorted out.

Thanks again for your support and patience – it means so much! It really does!

Time to Go Underground…

04 Wednesday Nov 2015

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This is a notice that for an upcoming amount of unknown time, I will be setting this website to a Private setting. Which means that only those that I approve will be able to view it. It’s not that I wish anyone who is already Following to no longer have that ability. And nothing has “happened” because of anything I have written to date.

I wish I could say that I need some added privacy, because my lineage has been discovered that I am the last decedent of a magical princess, and the FBI is on the hunt for me as I have the answers to unlock all the mysteries of the X-Files…but it’s not that great of a reason. And hopefully it will only have to be like this for no more than a couple of months.

To be honest, I am not sure how this new Private setting will work. My understanding is that I can add your email address to receive notices, but you may need to create your own WordPress account to be able to login and view.

I wish it was easy as providing a password for access, but I don’t think it’s that simple.

I will do my best to figure it out and let peeps know…but I will be attempting the new Private setting, sometime tomorrow (Wednesday) morning.

So…. please contact me via Facebook or email – remove spaces (k . m e r l e @ s h a w . c a ) if you want me to try adding you to the list.

Sorry for the inconvenience and for your patience with my decent into hiding…