Bye Bye Prednisone

Yowsers. Again, another huge break between posts. Life. It takes over.

I am super happy to report that I have been off the prednisone since October 28th. The high dose of imuran seems to be doing its job, so that’s neat-o. It just makes me super tired all of the time. I need about 10 hours of sleep a night to really feel rested. But I will take that over being on the prednisone. My rheumatologist has explained that I will need to be on the imuran for at least a year with no other symptoms, before we consider trying to taper me off of it. A few weeks ago a welt did start on the back of my right leg. There has been no swelling or any additional welts, so I am focusing on it staying at one and hopefully it will go away soon.

Kidneys are still being dorky. My monthly bloodwork still shows they are not working at full capacity and I have started experiencing some real-life symptoms. So next week I am going for an MRI of the blood vessels leading to my kidneys. Since my kidney biopsy in the spring did not show any signs of vasculitis, we are now going to check the vessels leading into them. Perhaps that’s where the issue is. Who knows, really…

I will see my rheumatologist a few weeks after the MRI to get the results. As well as my lung specialist. And that’s all I know for now.

Hope each and every one of your lives is tickety-boo!

I Wrote!!

I haven’t written for a variety of reasons. First I was boycotting my health – not wanting to give it any more thought or energy. Then I just got super busy with work and life. Then I just didn’t care. And now I am writing.

The last rheumatologist appointment I had in July was hard. I was still getting the erythema nodosum flare-ups each time I tapered to 10 mg of prednisone. So my doc finally said, “We need to add another medication. We can’t have you on the prednisone for much longer. Now I am worried about the long term side effects of it.” So when your doc says she is worrying, you know it’s time to give in and do what you have been trying to avoid. She also said at my next appointment we will schedule a bone density scan, because prednisone loves to leach out the goodness in your bones.

The additional drug I started taking is Imuran. It’s an immune suppressant that is used a lot with kidney transplant patients, so your body doesn’t reject the new organ. The downsides of Imuran is that it can affect your liver and lower your white blood cell count. Oh, and cause a certain type of lymphoma. So, I started with a lower dose for the first two weeks, going in for weekly bloodwork to check on my liver and white blood cell count. All good? Ok, up your dose. Did that for two more weeks. Still good? Ok, start your full dose. Weekly bloodwork switched to biweekly, and now I am at monthly. This was going well until I hit the full dose. Then I started feeling the more noticeable side effects. The best way to describe it, was that I felt hungover all of the time. Super nauseous, headache, feeling like there was nothing I could eat to make me feel better, headache above the eyes, and super tired. At first I learned that I had to eat a big breakfast with my meds to not feel worse. But then I vomited. Not a good sign. Called the doc – no actual response. The hungover phase lasted a couple of weeks and then one weekend I transitioned from taking my meds in the morning to before bed. I then learned that I had to take them right before I turned out my light, otherwise the nauseous would set in and falling asleep was a challenge. And as long as I could sleep through the night, I could sleep through feeling like I had to hurl. It was such an amazing feeling – to not feel hungover – I honestly felt that I felt amazing, just compared to how I was before on the meds while taking them in the morning. But that was pretty much my August – one big hangover without the party.

Imuran can take 2 – 3 month for the positive effects to start. So during all this turmoil in August, I kept my prednisone at 10 mg until after I got through the Edmonton Burlesque Festival and my trip to Vegas in early September. Then I started decreasing by 1 mg. I am SUPER PUMPED to report that I am down to 5 mg a day, still with no returning of the erythema nodosum. Before Imuran, I still got a flare up at 9 mg. So I am now working on finding a balance between not rushing the taper and also being really excited to be prednisone free. I have been trying to stay at each lower dose for at least 4 days before I decrease again. Even though my legs feel great, I also need to respect that my body needs time to learn how to be without the prednisone in my system. Prednisone is similar to a hormone that my adrenal glands produce. So being on the drug, my glands got to take a vacation from producing the hormone. I need a gradual reduction so my adrenal glands have time to realize the party is over, and it’s time for them to work again.

But those darn kidneys. They are still giving me grief. Levels in August and September were good; June and July were not. I saw my kidney specialist at the end of last week. He was going to update my rheumatologist and figure out a plan going forward – I see her at the end of the month. But what is more concerning to me now, is I am starting to see possible symptoms to my kidneys not working well, as opposed to just these spikes in my bloodwork. I can’t sleep throughout the night without getting up to use the washroom. I was lucky enough to link this to my kidneys from watching Longmore – Wyoming sheriff who solved a mystery about a black market kidney transplant. This first started when I started the Imuran, and thought was linked to that. But now I am thinking kidneys. And that really scares me.

Overall, physically, I am just really tired. I go to bed early, ideally by 9pm, as I am just exhausted by that time. I blame the Imuran. My body has a reduced immune system. It wants me to rest and not shake hands with anyone. I am ok with that.

That’s where I will leave this update. When I am up for it, I can share more how this has been for me mentally. But I feel good about getting this physical update written and shared.

Thanks for reading. Health is fun!

Desperate Call For Support

WE NEED YOUR MONEY!!! PLEASE SHARE! Or my swollen ankles will come after you!

Nadine is an amazing mother and friend. And on Friday her world was turned upside down when she was expecting her daughter to be returned to her, and instead was served with custody papers. I cannot even imagine the heartache she is feeling, as she does not even know where her daughter is, and the system is not set up to support her. Her friends have started this campaign to raise funds to pay for a lawyer. Nadine busts her butt as a single mom of two kids, going to school and working. For the last two days she has tried to do this on her own, but keeps being told – you need a lawyer. Please. Any amount you can donate is so welcomed. And please share. If you hesitate at all, just imagine not knowing where your child is. And having no system to support you getting her home.

More details are included in the GoFund me page – link below.

https://www.gofundme.com/2hvv55w

 

 

I’ve Got Friends In Low Places

I have been low for a while now. I can handle one, even two or three life challenges at a time. But recently, I definitely have had been pushed to the extreme, with multiple health issues, and then life after life struggles too. I am getting by, but not without multiple cries a day, lots of cuddles with my cat, and a beautiful little girl keeping me going – who heard me crying in the shower the other day, came to me and asked in her sweet, little voice, “Mommy? Why are you crying?” (Lesson Learned – the shower does not muffle my cries enough.)

Where do I even begin? Maybe at my toes and work my way up?

As much as I hoped and prayed that the third time trying to decrease the prednisone past 10 mg would be successful, it didn’t work. Once I hit 7.5 mg this time, not only did the ankle swelling return quite quickly, but so did the welts on my legs where my fat tissue becomes inflamed and super sore. For a while there, I really believed that the third time trying with a more tapered decrease would do it. And I would get off the prednisone and skip off into the sunset, drug free. When I saw my rheumatologist on Friday, this was the time when she said we couldn’t wait any longer. I have now been on prednisone for 11 months. The original plan was 6 months. This time she really spoke to the need of getting me off the prednisone, and mentioned the long term damage it can have and how we are running the risk of that now. So, because my legs flare up each time we decrease, I have now started taking Imuran. It’s an immune suppressant drug, and the idea is that instead of the prednisone treating the inflammation, the Imuran will stop by body from causing the symptoms in the first place. Sounds good, right? In theory. Imuran has some of it’s own major side downsides, such as affecting your liver, lowering your white blood cell count, making you susceptible to any other form of infection or sickness, and increasing chances for certain forms of cancer. Because of this, I start at lower doses for two weeks and get weekly blood work to monitor. If things go well, and I don’t see any other obvious side effects like a rash or vomiting, then we up the dose, wait a couple weeks, and then up it again, holding that dose steady for the next few months. Imuran takes about 2-3 months to take effect, so what we will try to do is get my legs “normal” at 10 mg of prednisone, and then begin decreasing by 1 mg, every couple weeks, if don’t get any flare-ups. But my doc did not want to take another chance of trying another prednisone taper, with no back-up, and then losing that time before starting Imuran anyways. If all goes as plan, I can get off the prednisone and only be on the Imuran for about 6 months. Wish me luck.

If that wasn’t enough, I found out that results from my recent pap smear show abnormal cells. If left untreated, cells that could turn to cervical cancer. The good news is that my cells are at the lowest stage of abnormal, and the statistics of removing the cells are high, and lots of women have treatment and then normal pap smears in years following. Both my family doc and the gynecologist she referred me to said I should be able to have the procedure of removing the cells within a few weeks. Turns out the earliest appointment I could get was December 20th. So, fingers crossed that in the next half a year, those cells don’t go crazy and morph quicker than they can be taken out! I am doing ok with this news, as the stats are positive, but like c’mon, do I really need to be dealt this too?

And then I guess we get to my head and where I am mentally. Besides the obvious health issues mentally draining me, I have been faced with changes in friendships and relationships, that have really gotten me down. I am questioning my career happiness. It just seems like all areas of me are really heavy right now. And I miss my mom terribly.

It doesn’t help that I feel so alone through this all. I do need to pay respect to the wonderful friends that I do have though. In the last little while, I am blessed to have some close friends and family recognize my struggles, and check in with me. Whether it’s a text asking how I am doing, or taking time for a phone call, or just sending me something to make me giggle. And for that I am very appreciative. But I will admit I long for a constant support. Someone to come home to each day who is there to listen and get a good-old fashioned hug. Now, my cat is there at the door each day when I get home, but she can’t drive to the store for me when I really need some Haagen Dazs. And she sleeps in my clean laundry basket, which just makes more laundry for me to do.

I keep myself in check by running through the questions my therapist used to ask me to gauge my level of potential depression. I still want to shower each day, so I am doing ok in that sense. And I can still find joy in the things I love. Check. Check.

But man, oh, man. What I would give for some time with my mom right now. Just to smell her. And feel her hands. And listen to her voice. I would give my left lung…

I’ll Tell You What I Want

I still don’t feel like thinking about my health. But I know I need to stop just letting it be, and actually do something about it. I mean my med doses. I had just been coasting on this one dose for weeks. Previously I had a plan, knowing which days I would be taking what doses, and looking forward to decreasing. This time, I had no mental capacity to reduce again. I think part of it was being scared to decrease to 10 mg for a third time and get the horrible leg inflammation again. Which would mean a whole new set of challenges and decisions that I just long for not having to make. The other part is that I am sick of thinking about my health. (Ha! See what I did there? That happened without even on purpose.) I was at 12.5 mg for almost three weeks. I had slight swelling of the ankles in that time, for a few days here and there. But luckily no new inflammation bumps on my legs. Well, there were two that got red, but not big and sore like before. So. I did it. Last Thursday I decreased to 10 mg. Third time’s a charm?? I now have slight swelling in my ankles, but so far, no new bumps on my legs. Although it’s sometimes hard to tell what is new and what is a left over bump from before. I am hoping and praying that the swelling will not get any worse and go away within a week or so. And then my plan (yes, I am making a plan) is to decrease to 7.5 mg in about another week. I will stay at 10 mg for two weeks at least. It seems like my body needs a more gradual decrease to keep the inflammation away, so I will listen to my body.

I actually took a calendar for May, June, and July, and colour coded out my various doses. I felt a visual would help me see a pattern in how long I could, or couldn’t, be at a certain dose. I’ve determined that one week on a dose is not enough. Two might not even be enough, depending on new symptoms. So I am going to stay at 10 mg for at least two weeks (again, hoping the swelling goes away), and then assess.

I have a lung doc appointment on Friday. Hopefully my new asthma medication for this past month has helped. But I do have a bit of a chest cold now, so I am not sure if the results will be hindered by that. Then I see my rheumatologist on July 22.

What do I want? I want to be able to keep decreasing my prednisone dose, and get off these flipping meds, without having to add on any other medication. That’s what I want. Now tell me what you want, what you really, really want.

Reminder – Oath To My Daughter

I wrote this oath on Monday, November 5, 2012. I like to revisit it whenever I feel I need a reminder of what I promised to her. I am doing really well on my promise for popcorn and pickle suppers. A few other items I need to focus on, as of late.

I will be a woman you are proud to call “mom”.
I will make decisions that keep you as my priority.
I will provide you with a loving home and family.
I will ensure you know and believe that not only are you beautiful, you are bright.
I will ensure you know and believe you have more to offer than just your pretty smile.
I will own my errors and take responsibility for them.
I will allow myself one good cry and then not shed tears for those who do not shed tears for me.
I will make popcorn and sliced dill pickles for supper if that’s what we fancy.
I will show you how to fall in love with books.
I will be spiritual so you can follow your own spiritual path.
I will make sure you can eat alone in a restaurant when you are a young adult and not be self conscious.
I will not accept anything in my life that’s not deserving of me, my daughter and my spirit.
I will laugh with you.
I will cry with you.
I will show you how writing can be your best friend.
I will show you how to be a friend.
I will be a woman you are proud to call “mom”.

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?