MCTD. When it’s not painful – just annoying

People often ask me if I’m in pain all the time. I’m not sure how to answer that. I will take check of my body and think, actually yes, my swollen fingers are a bit sore, my jaw does feel bruised, my teeth are aching today – yes I have pain.

However it’s often not pain as you might imagine. It’s not agony, it’s not constant – for me pain usually changes or moves after a day or two and even if it is a moment of agony (my friends know the times when I involuntarily scream out from a jolt of pain somewhere in my body) but a couple of deep breaths and that pain is gone and I carry on as if nothing has happened.

What MCTD is, is annoying. I’m not sure if it’s the fact that we’re in the middle of winter but I wake up and my body really aches. You know the heavy feeling you get when you have the flu? The real flu, not a cold. When it’s hard to lift your head or your limbs? That’s really annoying. I sit up in bed and physically have to move my legs out of bed with my hands. To reach to a high cupboard I use my other hand to hold my arm up to grab what I need.

I want to make a cup of tea and my Raynaud’s Phenomenon is playing up so the fingers on one hand are white and numb and won’t do what I want while the other hand is stinging red and purple. Everything is too cold – especially the milk from the fridge and I can only hold it for a few seconds before putting it down and rubbing my hands together. It’s ANNOYING!

You make adjustments to the way you do things to work around the illness and this becomes normal for you but when you stop and think about it you realise just how strange it is. Ah #MCTDLife. Such fun.

Strength of mind vs strength of body – 10 days post laparoscopy No. 2

“Where’s Doctor XX?”

“Think he’s gone to dinner.”

This is the first thing I remember hearing when I woke from my second laparoscopy for my newly diagnosed endometriosis. Such a simple conversation, but it sent me into a spin. If someone was going to dinner, I knew my surgery had been a lot longer than we’d expected. I knew it meant that they had to call in the bowel surgeon and that it was worse that we’d predicted.

In the blur of the anesthesia I realised that this could very well mean that I was going to have a colostomy bag. I considered looking down to see if I could see any evidence of one but part of me wanted to stay ignorant for a while. Then – within seconds, something clicked in my brain. I thought…

“Ok, if I’ve got a bag, how will I deal with this? How can I be ok with this?” These were not dramatic thoughts – this was me – seconds after awakening from surgery, looking for the tools and the strength to deal with another blow.

I think of this now, and I am amazed that, that is where my mind went immediately. A coping mechanism I’m sure but one I’m glad to have access to.

Seconds after this (and I’ll admit, my timing might be completely off) the searing pain of the surgery hit me and I forgot all about bags and whether the operation had been a success and all I could do is writhe and moan loudly in pain. I tried to breathe through it; I remember rubbing my right hand back and forth on the bed focusing on the repetitive movement to take my mind off the pain. I was near screaming. They asked me how bad it was on the scale of one to ten. Knowing I always keep 10 for the potential of pain in childbirth I told the nurse ‘Nine, nine…it’s a nine’.

I was given the first of many pain killers to come and when I was in some sort of control my bowel surgeon appeared at my side. He told me it was more extensive than they thought, they’d (my two surgeons) debated back and forth what to do and in the end they had decided for him to remove the endo on various sections of my large intestine and reconnect the pieces.

“Do I have a bag?” I asked.

“No, you don’t,” he replied.

I was taken to the hospital ward where I woke every 15 minutes in severe pain – pushing my pain relief button, hoping to get some sort of rest. The pain had now moved to my back and I couldn’t find comfort in my hospital bed.

The next morning my endometriosis doctor visited and explained the surgery had been four hours – long and hard and he was proud as punch to tell me, he got it all. It had been deep in the bowel, on my appendix – which would have led to acute appendicitis if it had been left, my ovaries, my uterus, my pancreas…I can’t remember where else.

But now my tubes, my ovaries and uterus are all clear. This is the news I wanted more than anything.

He managed to do this major surgery through key holes – I now sport six delightful holes in my abdomen but he tells me that most doctors attempting this would have cut me from top to bottom – so I’m thankful.

I spent five nights in hospital, looked after so well by the nurses. I was shocked by my inability to do the slightest actions like sitting independently, walking, showering and I told myself to be strong and get on with it – but the tears fell.

I told the nurses it wasn’t the pain, I was overwhelmed and humiliated. I wanted them to know the real me – the confident, independent, positive woman with a sense of humour. But in that moment I just needed them to take the weight of my body – and the weight of my world to make it a little easier to carry. And they did.

I’m now 10 days post operation. I’m back home and today is the first day I’ve felt semi-normal. I know because I want to write, I want to think of the future and plan, I want to do laundry. Until now I’ve laid in bed with my book, my Netflix and my dogs, with all my strength going to mending my body and not caring too much about the world outside or life ahead.

I am so lucky to have my husband, who is doing everything for us right now – on top of being the only bread winner, he is cooking, cleaning, exercising the dogs and massaging my legs and feet when I ask.

Hubby and I are excited. We have hope, we have a reason and not only might this lead to the family we’ve been dreaming of for years, but maybe it might just help my other pain and symptoms; my exhaustion, my constant inflammation. I know I have MCTD and that’s unlikely to go away – but maybe, just maybe life will look a little brighter here on out.

Heading back to bed now – that Netflix won’t watch itself.

 

IVF false start number two and my latest diagnosis

I’m sitting gingerly while I type this, trying not to move too much, conscious of the two small bandaged spots on my stomach from Friday’s key hole surgery. Through those little key holes, my doctor discovered Stage 4 Endometriosis.

I’ve just sat here after writing that, not sure where to go from here. So much has happened since I last wrote.
1) The thyroid medication to help my hypothyroidism worked and we got the green light to do IVF
2) I started the Synarel nasal spray and then Gonal F injections – which really were not that bad at all
3) I went in for my first scan to check the follicles were growing and looking good. I told myself to have no expectations. If we were super lucky we might be ready to do egg pick up, or they might not be quite ready and we might have to do a few more days of shots or this cycle might get cancelled
4) I had lots of follicles – I couldn’t believe it! But then I remembered I’d been told I have polycystic ovaries so that should not have been a surprise. The follicles were not growing fast enough and weren’t big enough – and they spotted endometrial polyps which needed to be removed as they can affect implantation
5) My cycle was cancelled
6) I drank a bottle of wine
7) I saw my fertility doctor and she said I needed a hysteroscopy to remove the polyps and we decided together while I was under the general anesthetic that I would get a laparoscopy to check for and hopefully treat any endometriosis if I had it.

Only in the last couple of months have I had some period pain but my cycles have been normal forever so I didn’t really expect to have endo, even though friends had told me that you can have bad endo (stage 4) and not have any symptoms – or have stage 1 and have agonising pain. A laparoscopy is the ONLY way to discover if you have endometriosis and I wasn’t keen to randomly have surgery just in case – but now I was ‘going under’ anyway – I thought let’s do it! And a dilatation and curettage (D&C) (an operation to scrape away the womb lining) and hell – another flush of the tubes, that I’d already had, (very, very painfully about a year ago) and my tubes had been clear.

This time however, my left tube is blocked and I have endo on my bladder, bowel and my ovaries are stuck to my uterus – or something. I was pretty out of it when it was explained to me.

Usually this is a day surgery but because I’m steroid dependent and have MCTD…as well as a mild cold, I had to stay over night for monitoring.

Oh – I forgot to mention – before we discovered that I needed this surgery – I’d quit my job. My job that has been a key part of my personality for the last seven years. I’d decided to stop commuting the 4.5 hour round trip to Sydney and wanted to de-stress as much as possible. So I finished up work earlier than expected and had this surgery.

The endo was too bad to be dealt with by my doctor – so now I wait to get in to see an endo specialist in Sydney for another surgery to remove it.

I’ve been told endometriosis is very common for people with MCTD – in some ways it’s refreshing to have something so common. That’s weird I know.

So – I have no idea what the path ahead looks like now. I’m kind of excited by that and I am enjoying taking the time to rest and recover and ponder my future. Not ponder too long- we still need money – but ponder none the less. A baby feels further away than ever. I don’t think it will happen this year. But I’m not giving up hope yet. I just have to keep getting up.

That’s what it feels like. I feel like I keep getting punched and I fall over. And for a moment I lie on the mat and cry and think – ‘I can’t get up’ but then I draw strength from somewhere and I stand up again – swing a few punches myself in a flurry of anger, frustration and hope and wait to be taken down again.

This path is so long and you can’t ever have expectations. Ever. So I’m strapping on my gloves, and as soon as this pain in my stomach eases – I’ll start swinging again.

Infertility….so much harder than my MCTD

It’s very hard. I don’t think I’ve ever written such an understated sentence.

I’ve lived with Mixed Connective Tissue Disease for eight years, with pain, fatigue, a body that is totally unreliable and this is harder.

Of course, it’s all connected. No doctor has actually said that to my face, and this surprises me. No-one has said, ‘you haven’t fallen pregnant because of MCTD,’ but as the test results return with no answers, it just has to be the case.

With MCTD, I accepted it early on. My mind became strong and I was thankful for the good days. People often comment on my positivity but there is something about the definitive nature of a life-long, chronic illness, you’re forced to accept it…there is no other way.

But with infertility – no-one says – ‘you’ll never have a baby’. On the contrary people are constantly telling you it will happen. These things take time, relax, my brother’s best mate’s cousin’s dog was in the same situation and they fell pregnant naturally when they just stopped thinking about it.

Well I am thinking about it. I think about it every single day, and it is so tiring. The heavy weight of every failed month casts a dark cloud over each day. Every pregnancy announcement on Facebook hurts – stings. Every time a baby celebrates their 1^st birthday I wonder if we were trying to fall pregnant before those parents were. And I’m bored of this. I’m bored for my friends and family who know I will bring it up, who know I report news of friends’ pregnancies to them with a slight bitterness, that I try to hide when they show delight at the news.

After ovulation tracking, taking letrozole to help with ovulation, so many blood tests, getting a HSG – one of the most unexpectedly painful experiences of my life – to timing….EVERYTHING….so that there is no joy anymore.

We finally made peace with the idea that we would have to do IVF. I researched and joined support groups online and prepared myself for the fact that this would not be an easy road and it is not guaranteed to work.

What I didn’t expect was that we wouldn’t even easily get to the point of IVF. My blood tests showed a slight elevation in my thyroid levels. Something that wouldn’t need to be treated usually, but levels that aren’t safe when trying for a baby. And so IVF was pushed back. I was medicated and monitored to see if my levels sort themselves out.

I am told at this point that yes – this is a common problem with people with autoimmune disorders like mine. I do my research and find out that this is a common cause of infertility. Could this be the reason?

So we’re waiting to start – and as a new pain niggles my left side on and off for weeks, I’m worried that it’s something I should be worried about. Something that could cause more problems in IVF – or is it just MCTD with its random pain?

This weekend, each morning I have awakened feeling as though I have run a marathon, while lifting weights. It hurts to roll over and the very real fear takes over my mind that I am about to inject hormones into my body – that will hopefully lead to a successful pregnancy – and more hormones. What if I can’t get out of bed? What if I’m in so much pain that life stops?

I try not to fear the un-known but I’m almost as scared of this working as I am of it not working. Almost.

One year.

So. We just passed the one year mark. I can’t believe it. I honestly believed it would happen more easily.  Not because I wasn’t aware of how many people struggle to fall pregnant but if I’m totally, completely honest…I thought it would happen more easily for us because…haven’t I been thrown enough curve balls that maybe I ‘deserved’ to fall pregnant easily?

Isn’t that ridiculous? I can’t even believe I thought that.

Then I would imagine, it will probably take 6 months….that’s pretty standard. Hmmm maybe 8 months. Maybe we’ll find an issue when we get the tests done and we can resolve it. Maybe ovulation tracking will help get the timing right.

And now at 12 months…that’s 14 cycles for me, I’m exhausted. Not only emotionally and mentally from the absolute rollercoaster of hope and disappointment that is trying for a baby but 8 of those months saw me having an MCTD flare every two weeks.

Every two weeks I went into fever, couldn’t lift my body off the bed and could only lay there and cry.

A change in meds…increase in prednisolone, off the anti-inflammatories and off the plaquenil has seen me flare free for about 4 months. Working from home two days a week has really helped as well…that four hour daily commute is a killer.

I’ve come to a strange sort of calm right now. I cannot imagine having a baby…I cannot predict when it might happen. I have no control over when it might happen.

So I feel like I’ve let go a little bit. Just a little bit. Part of it is focusing on how brilliant my life is now and how lucky I am.

Part of it is changing my expectations of how I saw my life. Three kids may not be in our future and it might take us years to have just one.

People will continue to have babies around me, and fall pregnant easily and quickly. It won’t make sense but it doesn’t have to.

Someone said to me recently ‘Don’t run anyone else’s race…you can only run your own.’ I don’t know why that stuck with me, but it did.

So…with better health on my side, after a year of no work travel, I’m saying yes to trips again and I can not wait.

Ready? Refocus. Recharge.

MCTD and pregnancy – no not yet.

I’ve been putting off writing, because as each month passes, I think…maybe this month I’ll be pregnant and I’ll be able to write a positive, glowing blog post detailing my experience as a pregnant woman with Mixed Connective Tissue Disease. However as we try for the 8th cycle, I don’t have positive news to report.

For any woman trying to fall pregnant over multiple months, it is  a hard and emotional roller coaster of excitement, hope and true belief it is happening, to bitter, bitter disappointment that is very hard to talk yourself out of.

To see others fall pregnant so easily is confusing. I’m not a jealous person and I do believe it will happen for me but I’m confused at my pangs of jealousy, when I’m very happy for my friends but I have feelings I’m not used to feeling. I’m also confused about what we’re doing wrong and what others are doing right.

I know 8 cycles is not a really long time, I know this but for me, it has been an incredibly hard 10 months off methotrexate. Not only am I being ‘kicked’ every month I don’t fall pregnant, I’m still having regular flares, fortnightly or on a good month, monthly.

On these couple of days I’m so heavy, my body won’t work, my limbs are exhausted, I’m in aching pain, I struggle to stand without help, .I struggle to lift my arms, my knee keeps giving way and my thumbs are cracking and aching. My face feels bruised and I just want to cry. And to my husband’s dismay, I do cry. A lot.

I’m struggling. When I’m good, I get on with life, I plan things, I exercise and promise myself I’ll keep with the routine and then when the flare hits, I can’t lift my head up and exercise has to be forgotten. Showering is hard, getting food for myself is hard, feeding the dogs is hard, getting dressed takes so much effort.

Do you know how hard it is to lift your legs into a pair of shorts or do a bra up? Taking off a top is a creative dance move to minimise the pain in my shoulders. And when I’m dressed, I’m ready to lie down and recover.

I’ve had family ask me if it’s worth it. I truly believe it is and I also think, everything good in my life has taken time, I’ve worked for and waited for…..I’m hoping it helps me be that little bit more grateful, to know what it’s taken to get there. That’s what I tell myself anyway.

I really invite anyone with MCTD, Lupus or something similar who has been pregnant with these awful illnesses to tell me your story….hopefully it has a happy ending.

 

MCTD flare right now

I’m writing now, on my phone, on the train home because a flare has just hit me and I need to share now.

Excuse any mistakes.

This is happening basically fortnightly now.  It comes on so,so quickly I can’t believe it.

30 mins before starting this I was fine, leaving work and then on train it hit me.

Absolute exhaustion that makes it hard to sit up. It hurts to swallow and my neck is very tender. My arms feel like I’ve lifted way too heavy weights. I actually feel nauseous today as well.

My fingers are aching and switching between purple, white and red but always tingling.

My back and shoulders are so sore I don’t want to move…but I can’t without much effort anyway.

I feel like I might be dying…I know that is extreme and irrational but it’s such a sudden, all encompassing pain, malaise and tiredness that I wonder if it’s going to kill me.

Am I being too honest? I’m in the thick of it right now. I’m emotional and I’m trying to pass the minutes on this train ride until I get to my station.

Then I’ll deal with finding the energy to stand and walk off this train.

I’ve told work I need to work from home tomorrow…they understand…again.  and I feel so guilty…again.

I’m scared. I want my bed.

I want my health.

Three months off methotrexate- my experience

Today I’m going to tell you about the progressive pain of being off methotrexate, with Mixed Connective Tissue Disease.

But before I do, I have to stop and acknowledge the fact that I am so lucky. I am so grateful. No matter the pain, no matter the uncertainty, I am constantly faced with people suffering so much worse than I am.

It is so important to see what you have and be thankful for it and I try to do that every day.

It’s been three months since I stopped methotrexate and I’m noticing it. My shoulders ache and it is difficult to raise my arms, to reach or do anything with them. Not impossible but difficult, exhausting and painful.

I went to the gym the other day and any sort of weights were out of the question, so I walked on the treadmill and rode the bike and tried not to be bitter that I couldn’t do the weights that I enjoy.

My fingers are swollen, my new wedding ring sits snugly on my ring finger and my joints in my thumbs crack constantly. I am back to the time when I flinch when I have to shake hands with someone because my joints are so tender.

My wrists are weak and pang with pain every now and then. I take a deep breath and concentrate on not yelling out when I get that blinding pain. I know it will last less than 10 seconds and then I can get on with things.

My sleep is interrupted. When I need to bring my arms from above my head down I wake and physically lift my arms to the new position. Sometimes I don’t have the strength to push the doona off me.

And I’m crying a lot more. Pain is exhausting and sometimes I feel sorry for myself.

But then, the reality is, I’m choosing this because we want children. I am still not as bad as I was at the beginning. My legs and feet are doing fine. So I am ok.

Mentally, I am ok and my life is good and that will propel me on.

Three months down. I can do this.

Naomi

As the weeks pass…life without methotrexate

As I mentioned in my last post, I had to go off the methotrexate. Rid my body of it and I’ve read different thoughts online around whether you should be off it for a month, or three months or six months before trying for a baby. In the end I went on my rheumatologist’s recommendation and suggest you do the same.

The first six or seven weeks…I felt good. I felt GREAT. No additional pain, I wasn’t feeling any malaise, nausea, headaches that I had grown accustomed to, and when we were on our honeymoon, I discovered I wasn’t nearly as sensitive to sunlight. This was fantastic.

I was starting to question why I was on that drug at all and maybe I didn’t even need it.

But then on the eighth week my shoulders started to hurt again. Sleeping got uncomfortable, I’d wake when I needed to turn because of the pain. I found it hard to lift my arms up to get dressed, do my hair, reach things on a high shelf.

My wrists also started to ache again and I got a pain at the base of my neck. This was all too familiar – well the shoulders and wrists were. It reminded me of back in 2009 when this dreaded disease took hold of my body.

I’d discussed going back on the prednisolone if the pain got too bad off the methotrexate but I emailed my rheumatologist (yeah he’s really good like that) and he told me to try going back on the Orudis (anti-inflammatory) first. Which of course means also going back on the nexium (to protect my stomach). And just like that, I’m taking a handful of drugs again and my pharmacy bill has jumped.

It’s helping. I’m not feeling amazing, but it’s not unbearable at this point. I just have to keep my eye on the prize… if we want to have kids, I need to do this.

Sorry to those who read this and aren’t sick as I know the med talk is a bit boring but I also know for those researching the illness as they are battling it too – it’s helpful to know what meds others are using.

The next stage of my MCTD journey

Wow it’s been a long time since I’ve written. This is a good thing, it means I’m living life, not dwelling on my illness and I’ve been making MCTD such a small insignificant part of everything that I don’t feel I have anything to write about.

It is time to catch you up though. Since my last post in February last year, my boyfriend and I bought a house, moved 1.5 hours from Sydney, rescued ourselves a puppy, got engaged, got married….and today I sit here in my own home, with my wedding rings on, Biscuit the dog at my feet and my honeymoon now done and dusted and I can’t BELIEVE where I am or how I got here.

I feel very lucky – but at the same time very scared. I’m 32…coming up to 33 so of course, babies are on my radar. The question will no doubt be on everyone’s lips over the next couple of months but for us it’s not as simple as deciding to fall pregnant. First, I have to rid my body of the methotrexate – a drug that can be extremely harmful to unborn babies.

However I’ve been on this for so many years I don’t know what sort of pain I’m going to experience or if I will even be able to get out of bed. And that’s terrifying.

I do want to be honest here and say, I have ummed and ahhed over whether to write these next few posts because I have no doubt they will be revealing. Usually you don’t tell the world when you’re trying for a baby (which, hold your horses, we aren’t yet) but I looked at the title of my blog: MCTD: The Truth, The Challenge, The Hope and while I have been so lucky the last few years with less health challenges, now is a time of challenge and hope so I feel I need to be truthful.

Not simply because we live in an age of over-sharing, but because, I have done so much research on MCTD and pregnancy and there is SO LITTLE out there that I just feel I have to contribute. I don’t know if my story will be a positive and easy one, or a challenging one but when people with my illness, or Lupus, or other autoimmune conditions Google ‘Falling pregnant with MCTD (eg)’ they may just find a current, real story of someone who is going through it.

I am positive, I am hopeful and I am nervous.

Here’s to the next part of my journey.

Naomi