Time to reflect ……

It has been awhile since I’ve posted anything, but over the last few days I’ve found myself thinking about where I was 6 years ago where this journey began.

I was 34 weeks pregnant with our first baby. I’d had chest pains on and off for several weeks & my midwife said lets just send you to Kew Hospital in Invercargill (we were living in Queenstown at the time) just to be checked out and maybe I should just pack a bag just encase. Never in a million years was I prepared for what was going on with my body. After many tests which found nothing & made me to believe it was all in my head and its nothing. Thinking they would be sending me home … but no. I remembered the day so clearly … we were waiting for the doctor to come back with my results from the last lot of tests. Ben had gone to get something to eat. The doctor walked in with about 4 trainee doctors and said we’ve found blood clots in your lungs. I remember just looking blankly at them think What?? Ben walked back in and I said I have blood clots.

At the time I really didn’t know how serious it was. The doctors didn’t really seem to know what should be happening … pregnant and with blood clots. There were lots of “plans” made for how my delivery should go …. I was told I’d be home in a few days once the “plan” was in place …. a few days turned into 3 weeks. Women would come in and leave with their babies & I was still there waiting for this so call “plan”

Ben had to go back to Queenstown to work so my parents came down from Nelson to keep me company. Wasn’t a lot to do there .. I knew no one in Invercargill. I played a lot of cards!

Anyway … at 37 weeks mother nature took over and I went into labour and safely delivered our gorgeous son Austin. It wasn’t until we were home where everything hit home at how lucky I was. If the clots weren’t found who knows what could have happened.

I feel very lucky. Even though since then its been a rocking road with it leading into being diagnosed with two autoimmune illnesses, Lupus and antiphospholipid syndrome (APS).

Everyday that I have to fight through pain & everything that comes with Lupus …. I keep going for my two beautiful children that I’m so blessed to have. They are my world.

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Lupus spots ….. & Stress = Flare

For the past few months I have had awful looking spots on my arms. They are like small blisters, that then weep and pop to which I then find myself scratching them. My arms are looking a real mess, I have scars plus new blisters everyday. From the results I have found online, I’m pretty sure it is related to one of my many meds. Plaquenil, this make me even more sensitive to the sun, which can result in blisters or a rash in areas that the sun hits the most. I feel like they are getting worse at the moment … maybe I need to cover myself completely …. hmm no thanks!

This is what they look like (not the best picture, was hard to get a good shot)

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More and more I realise how stress is such a trigger for a flare up. Currently things have been a tad stressful at home after my husband is unable to work at the moment due to an accident chopping part of his finger off. So with dealing with all of that … I start to get joint pain, fatigue, really bad brain fog, sore mouth etc etc etc ………… nothing too bad that I can’t coupe with it, but its are warning sign for me. But hey life must go on right?!

I recently saw a post online from a fellow lupuie they had put their medication in a cute box .. and I thought why haven’t I done that rather than a horrible ratty zip lock bag that sits on the kitchen bench in the corner …. so I did!

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Actually makes it easier to remember what pills I’m taking each day! Its the small things in life that make you smile 🙂

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Just another lupie living with lupus

Wendy

Waves of lupus …

Today as a wave of tiredness hit me this morning it had me thinking how quickly you’ll be hit with the reminder that you have lupus. Like standing in the sea and being hit by a wave that knocks you over!

This morning after I was up, kids had been fed I went for a shower … Once I was out I could hardly even walk up the stairs. I laid of my bed and crashed out for an hour! Thankfully it was a Sunday and my husband was home.

I then had some plants I needed to plant in my garden. My end of doing that (4 plants) it felt like my wrist and fingers had been crushed and were completely broken! Thank god for strong codeine! Just to ease the pain slightly for the day is a good feeling!

More and more I’m noticing I’m getting my words muddled up and I can’t think of a name of a simple thing. My eyes are still playing up on me too. I’m due for a round of bloods this week then I think I just might head to the gp for a check up etc.

Sometimes I think the fatigue is worse than the joint pain! …. Until I have bad joint pain anyway! Lol

Just another lupie day living with lupus

Wendy x

I’m back & feeling good!

Gosh it is has been 7mths since my last post ….. opps!

So my last post back in June was where I completely broke down & lost it! I managed to get an appointment with my rheumatologist within the next week. I told him what had been going on … and it was straight off the prednisone’s! (Nasty things! They work well, but do damage also!) So I began slowly coming off them.

Decision was made to re-add back in plaquenil back into my daily meds to work with the Azathioprine. Because of my bad lupus memory I can’t really recall a lot more that happened! But adding the plaquenil has helped me so much! WOW to fact where I had at least 3mths of feeling “normal” and healthy. I was managing to exercise daily, I didn’t need naps everyday and I wasn’t in any (ok maybe minor) pain. It felt like  I had my life back in my control! Even now things are good. I’m not saying I am 100% better, cause I do have  flare ups every now and then .. .but instead of them lasting a week or more, its only about 24hrs! I still need to remember that I can’t push myself and I need to listen my body ….. and if I over do it, I’ll know about it!

My regular blood work has been good except for the past few weeks where my blood got dangerously too thin. But that has come right now. Iron levels are still an issue … the range is meant to be between 20-100 … mine was at 9! Just a tad low lol! So another daily pill added to my handful! which is currently 11pills plus the odd painkiller through the day when needed too.

Lets hope 2015 keeps getting better. I am hoping to find work this year …. although I do have to find something to work around my illness and family life so I don’t over do it.

Wendy x

Predinsone …. the good and the bad …

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Saturday afternoon lead to a big meltdown!! I guess I wasn’t even aware of how bad  I was actually feeling … mentally that is. I just lost it, everything I had been keeping to myself just all boiled over. Depression had got the better of me. I didn’t realise that a side effect from prednisone is also severe depression (something I had already suffered with before) I was even having thoughts that weren’t nice and I shouldn’t be having! I went to my GP on Monday and have now come off prednisone. But now what? Its been a couple of days without it and I’m feeling the effects of Lupus again! Pain in my hands and fingers, tired, I am dropping things & tired!! I didn’t realise how much those awful drugs were actually helping me! But now what is the next plan?!?

My GP sent a letter that day to David Porter my Rheumatologist – and today his receptionist phoned for me to see him next week. Lets hope we can get a drug mix that works well …

My GP has also referred me to a councillor. I feel I need to talk to someone. Help me understand and accept this illness. It is a lot to take in. So I am hoping this will help. Also I plan to see a nutritionist as the weight I have put on since starting the prednisone really upsets me. Plus I am hoping that if I change my diet it may also help symptoms.

Here is to things improving again!

Wendy

Am I feeling ok … I think so?

So I have had my operation, it went really well & my recovery went better than I thought it would! So yay one less thing my body to fight against now. I am back on all my meds again although I have reduced my prednisone. As you know from my other posts …. I HATE THE BLOODY THINGS. I’ve reduced it to 7mg a day (yes I know it isn’t a lot) & I have started to feel the pain in my hands and fingers again. Maybe I’ll ignore that it will go away …. wishful thinking. I really want to start doing some more research on prednisone and what else there is out there to take that works the same but without the awful side effects! One side effect I am noticing more off … is how I loose the plot very easily lol! My poor husband!  Some issue will come up, that isn’t really an issue and I’ll just loose it…. like a crazy lady! I then take a step back and think what the hell just happened!!!

I was reading another person’s blog with Lupus and she had a picture of herself a few years ago ,…. happy, healthy with a comment saying a wish I could find this person again. I can so relate to that. My son turns 5 next week which is a huge milestone for him and us but also 5yrs ago my journey began with this illness. Wow 5yrs of being sick with so many unanswered questions, doctors not listening to me, tests after tests, me thinking I am going crazy! At least things do seem to be good at the moment.

I am wanting to get a tattoo. I’m getting a tattoo artist to design a tattoo with the butterfly and my kids initials to go on my wrist. I’ve looked into the risk of having a tattoo while on warfarin and it all seems fine. As fellow Lupies know, everyday is fight with this illness and for myself I want the butterfly there to remind me that I will keep fighting not just for myself but for my children too. Someone said to me it was be even harder with this illness and having toddlers …. but I hate to think how I could be if I didn’t have them. They are the ones that make me get out off bed each day, no matter how bad or good I am feeling … I have to for them. And I am SO thankful for that.

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Lupus Awareness Month

Its been a while since I have posted anything ….. life has been pretty busy around here!

On Monday I have my operation to remove my tonsils. Such a simple operation isn’t so simple for me! Lots of visits with doctors regarding my blood clotting and making sure everyone is on the same page!! On Wednesday I stopped warfarin and I am now injecting Clexane into stomach each day until my operation. This is because if I am on warfarin and I have a bleed it is harder to get under control where Clexane is a safer option. I think I am pass being nervous about it now, I just want it done! I’m hoping that once they are out and I have recovered my health will improve all round…… maybe that is wishful thinking! But I’m sure my body will be please to be fighting one less thing!

As fellow Lupies will know, May is Lupus Awareness Month. Wear purple and spread the word about Lupus. Because lets face it, not many people know a lot about it! I’ve been reading a lot online and it is believe that over 5 million worldwide have a form on Lupus … isn’t that amazing! And its an illness with no cure – will there ever be!??! Even celebrities have Lupus, Selena Gomez, Lady Gaga, Seal, Nick Cannon, Kristian Johnston, Toni Braxton, Anna Gunn (Breaking Bad)

I have been feeling pretty good really. We have just moved house, so that took a lot out of me and took a few days to recover (thank god for nana naps!) My ulcers have finally settled down. That really took its toll on me. I have never experienced pain from ulcers like that before. They were so raw that they would bleed. I’ve dropped my prednisone dose down slightly to see how I go … so fingers crossed. Preferably I would like to be off them all together OR on something else. Sometimes I just get sick of thinking about it all and it is easier to just take my handful off pills and get on with it!!!

At moment I am enjoying our new home, pleased to be feeling better – and now just to get my operation out of the way and hopefully things will keep improving

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Keeping my head above water …. or Lupus?!?

The last few days haven’t been good at all. Which is a shame, because I’m sure I had  a good couple of days last week?!?! I’ve been in a lot of pain and my mouth OMG ulcers!!! I have honestly never felt so much pain from ulcers before! I have been to the doctors and the chemist several times trying different gels & home remedies! And nothing has worked! I’m sure what the next step is now. All over my body just feels as it is shutting down.

I had one of my dear friends say to me that you are always smiling and look beautiful you just won’t know what was going on with you. So true, I have to keep going, so a pile of makeup and a smile keeps me going lol!

My stress levels are about to rise again! Moving house, hubby away with work and I have to go to hospital for an operation & sort out 2 toddlers each day (& entertain them over holidays!) I know it will be fine, because I have amazing support around me! Although the operation scares the shit out of me! More the fact of them controlling the blood those due to being on blood thinners & how the recovery will be. I have a pre-op appointment the week before where my medication will changed and I will then be injecting clexane rather than orally taking warfarin.

Sometimes I really do feel like there is no end to this …. you seem to rise above it for a short time and then fall back down pass where you were.

Today I spend the day at the beach with the kids…. which is perfect my “inner self being”

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The Spoon Theory

I found this online sometime ago, & thought I should share this will you. Some of you may have read it before – but explains what having this illness can be like by thinking of it differently

The Spoon Theory by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all. I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.” Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”. After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.” Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino – See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.QrD3RjjR.dpuf

Back to the doctors I go ..

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After a few days of feeling awful …. so bad that the days were being filled with tears, due to pain and my whole body feeling like it is shutting down I went back to the doctors. My normal GP was fully booked, so I had to see the register. Which I am always unsure about – because they don’t know you and always seem to have a different view to your usual GP. But this one was pretty good. She listen to my concerns and we talked about my symptoms and the stress behind them the has probably caused this latest flare up. So new plan is to increase prednisone, increase pain killers and some gel to ease the pain of a mouth full on ulcers. Also another tablet to add to the mix, and appetite suppressant. Prednisone increases your appetite (a lot!) so this should help balance this out…….. I hope.

I’m still feeling really tired, sore etc but hopefully some progress will be made this week

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I’ve started to read ” The Lupus Book” by Daniel Wallace. A really interesting read. I brought it mainly for me to learn more about this illness and also for my family to have a read of to, to help them understand a bit more too. It’s full on, but really interesting too.

Just another lupie day living with lupus x