One year.

July 12, 2017

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.

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

August 8, 2016

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.

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 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.

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

 

 

I’m not sure if I’ve ever written in detail about a flare. I know everyone’s experiences are different and some people don’t have flares, others are just in pain all the time or perhaps some go through what I go through.

Last night I had a flare. It was probably the worst one I’ve had in many years. It scared me. It got me to the point where I started panicking that maybe my internal organs were shutting down and maybe I should be going to the Emergency Room but I don’t because I am presuming it’s just a usual MCTD flare. So I thought I’d share the experience, as best as I can.

Yesterday, my boyfriend and I went for a swim at North Sydney pool. Stunning day, under the Harbour Bridge, blue sky, extremely bright and I jumped in the slow lane and for around 40 mins did leisurely breast stroke one way and then kicked back on my back the other way. I’ve been working out pretty hard in the gym lately, so this didn’t feel like a hard work out.

Around 40 mins in the mid to late afternoon Australian sun and then we jumped out, drank a bottle of water and headed home. Sitting on the lounge relaxing, sipping on a cider, about an hour later I started to feel a little achy.

“Wow, D, I must have worked out harder than I thought, I’m a bit sore.” I tell my boyfriend.

I get up around 6pm and start cooking dinner. I quickly start to go down-hill. My flatmate comments that I look really tired and I find myself holding myself up on the kitchen bench and breathing deeply. I have a deep ache in my shoulders and across my back. I have a deep fatigue sweeping over me over the matter of around 20 minutes to half an hour. I feel determined to cook as it’s my turn and I don’t want to make excuses.

The malaise I feel is all consuming. I start to cry. In pain and in frustration. All while trying to scrub the potatoes and peel them. The tears are flowing and I start talking sternly to myself. “Come on Naomi. Just do it! You can’t stop now. You stupid idiot, you’re just cooking dinner.”

The tears turn from streaming silently to sobs and my boyfriend comes in to check what’s going on. He tells me to stop cooking if I feel sick and I tell him no! It’s my turn to cook. I can do it. It’s not his job to do everything when I feel sick.

So he returns to the lounge room and I continue to sob hysterically, breathe deeply as if I’m in labour and swear at myself to get through it. Finally dinner is done and I tell D to serve up and that I am not hungry any-more. This is when the chills start.

I grab a blanket and curl up on the lounge and my body is overtaken with extreme shakes. I have a chill deep in my bones and so I head to the bathroom where I have a boiling hot shower – no doubt using all the hot water in the house – for around 20 minutes. Then I ease myself out – still sobbing by the way – and dry myself as best I can and fall into bed.

The shaking hasn’t subsided and I text D to bring me a hot water bottle. For some reason, when I’m in this state of fever I find it comforting to talk to myself. I may be a little delirious but I talk nonsense to myself, I laugh, I cry I repeat words over and over. I’m not sure if it’s a distraction or a focus tool but it comforts me in a time when I feel completely alone in my illness, my fear and my pain.

I text my Mum. It’s not that I want her to worry but just knowing she is thinking of me and sending me hugs helps. After around two hours of the chills, the hot water bottle kicks in and the chills disappear, replaced with a hot temperature. I kick off the blankets and lie there when D comes back in and I tell him the chills are gone and can he bring me a big bottle of water I can squirt into my mouth. Because I’m in so much pain I can’t sit up or roll over. I ask D to pull me into a sitting position. He recoils at the heat of my back. I drink some water and down some Panadeine. After about another hour of still not being able to move I decide to take more Panadeine. I know it’s a bit early but if it were a stronger drug it would have more codeine in it so I figure I should be fine.

I forget I haven’t eaten anything in around 7 hours and within about 20 minutes I’m moving as quickly as I can (slowly) to the bathroom to throw up. I sit on the bathroom floor cooling myself against the tile wall.

At this stage I’m furious because I know I can’t exercise the next day and probably won’t be well enough to go to work. I hate letting my team down and I hate that when I am trying to lose weight I can’t keep up an exercise routine. Yes, all of these things are running through my head as I lie with my head in the toilet.

After a couple more vomits, I have a bad pain high in my stomach. Was that my stomach? Or was that my liver? Where is my liver? I know my liver could be in danger with one of my medications. This is when I started to get scared. Should I be going to hospital? I don’t know. I don’t know. I don’t know. And I know only I can make that decision. I decide if I vomit again then I go to the hospital. Luckily from this point I manage to fall into a fitful sleep for around an hour. Every time I need to turn over or move my arms, I wake up from the pain so I take my pillow and water and walk slowly to the lounge. I eat some ice cubes and wait to see if my stomach can handle it.

I doze on and off for a few hours and then when D goes to work early, I manage to get back to bed, take some Panadol only and fall asleep.

There will be no work, there will be no exercise. There will be a day of recovery. Exhaustion and aches which hopefully by the day after will be gone and I’ll forget how bad it was. And that’s what I look forward to.

I’m used to being the patient. I don’t think I play up to it but I’m used to people asking how I am, I’m used to never being fantastic but knowing the appropriate response to make people feel comfortable enough without me lying.
I’m used to the frustration of feeling like a burden on my loved ones and putting limitations on the people I am with.

And then two months ago, my boyfriend hurt his back at work. He’s a chippy and he doesn’t know exactly what he did but while I was overseas for work he suddenly became bed-ridden.

I came home exhausted from a media trip to Vanuatu, feeling on the edge of a flare as I always do after a work trip and ready to crawl into bed for a Sunday of sleep before going back to work on Monday. But as I walked in the door and saw the mess and found him still in bed at midday I knew that the tables had turned and this was not a dull back ache.

I mentally picked myself up and cleared up the house, put on a load of washing and began thinking about whether we had food in the house for dinner. I thought – he has nursed me through some bad flares and general day to day MCTD miserableness, this is my turn to care for him.

Two months later, he is still off work, can only walk for short periods at a time and is only showing very slow signs of progress. He is feeling down and bored and struggling to see the light at the end of the tunnel. We know he will get better, we just don’t know when. And in the meantime, I try and hide my own pain, which thankfully right now is not too bad, and concentrate on giving him the understanding he needs that endless doctors, constant pain and restricted freedom is the worst and just as he will continue to hold my hand through a lifetime of MCTD, I will hold his hand through this…and whatever else life throws at us.

A couple of weeks ago, I was having a conversation and out of nowhere, my voice cracked. It squeaked. It reminded me of high-school when the boys voices all started breaking and we all politely ignored it but noticed it all the same.

The first couple of times I laughed and said ‘What was that!?’ but now it’s been happening more regularly. As in a few times a day. There is no sign. I don’t have a sore throat. My voice is not hoarse – I know that that is a common MCTD symptom – it just keeps giving out.

I am very interested to hear from anyone else with MCTD, lupus or any of the related illnesses about whether you’ve had this symptom before. Of course I’ve been googling but it’s not showing up as a regular MCTD symptom.

However – as those of us with this delightful disease know, medical sites hardly delve into the reality of what it is like living with this and the plethora of effects it has on our bodies. Forums and blogs are, far and away, the most honest representation of what we are going through.

There is no way a doctor can understand this illness without listening and observing many of us who suffer with this and maybe one day, those websites that give us that tiny list of symptoms will expand and make us feel less alone as each new symptom rears its ugly head.

I’m sick of wondering if everything that happens to me is MCTD related or something different that I should be concerned about.

So I will ask my rheumatologist if he has heard of this before and no doubt he’ll tell me to keep an eye on it and then if it gets really bad I will be put in for copious amount of tests that will confirm that it likely is a part of the illness, but noone can really be sure.

So! Let’s avoid this and if you’ve had this – write to me and hopefully if someone searches MCTD and voice cracking, they will come across this and know they are not alone.

It’s all we can really do.

XX

20/4/14 Just wanted to update on this as it has been ongoing and my rheumy said he did not believe it was part of my MCTD and sent me to see an Ears Nose Throat specialist. After a particularly uncomfortable appointment which involved a long thin camera up my nose and down my throat, the doc said he believes it’s a cyst on my throat that will need to be removed. It is not related to my MCTD. I thought I had better update this so others are aware of how this worked out. – Naomi

I’m sorry. It’s been way too long since I’ve written and I’ve had a few people contact me asking me how I am as they haven’t been able to follow along at home by reading my blog. I know it’s been a long time. There are contributing factors. Laziness, is right up there.

But for the first half of the year, there was a lot going on with my family, that for me and I hope all of us, my MCTD became pushed aside and lost its importance and prevalence. Of course for me it was still there but I didn’t feel I had a right to talk about it when others were going through much worse. 

So, we’re almost in October 2013. It’s been a big year. I turned 30. My boyfriend and I moved in together and I got off the prednisolone. 

You might remember that prednisolone was my saving grace back in early 2010 when it got me moving again. When, about 6 hours after I took it I could stand without assistance and minimal pain, I could sleep without searing pain in my shoulders waking me up and I started to no longer see MCTD as a life sentence. 

I think it was because of this, that it was so hard to give up. While my rheumy told me that he never wanted me on it forever and that the plaquenil and methotrexate is meant to work without the need for prednisolone, I just couldn’t believe that I would function without it.

But slowly, so slowly, I eased down from the measly 5mg I was on, half a milligram at a time. I got stuck on 2.5 for ages. Every time I went down to 2 I had a flare and it just didn’t feel worth the pain to get off it. 

But then I knew, I wanted to be off it before my 30th birthday, so I persevered, dealt with regular pain and then one day, I stopped taking that last half and I was off it.

I do notice a difference. That original pain I got in my shoulders when I first got sick, returned and now wakes me up from time to time. It means I take more codeine to kill the pain than I used to but I try to only use it when the pain is really bad.

Yoga

And apparently, one way to make the pain really bad….is yoga.

For years, people have told me that yoga is something I should try that they think it would be good for me when there is so much exercise I can’t do. I pushed back, sure that holding my arms up and doing downward dog would be too hard on my wrists and I would be mortified when I couldn’t move from one position to another. But eventually, the opportunity arose to go with my sister to a small class where her friend, who I knew, was the instructor. I felt it was a safe space and I could tell the friend my limitations and just do what I could.

Well, I quite enjoyed it. Especially the meditation at the end, I didn’t lean on my wrists, just leaning on my fore-arms and with my sister by my side I just giggled with her when I was doing a pose totally wrong. I felt so thrilled when I finished and was so excited that I had been wrong and that maybe I was going to become a yoga queen.

Then, as night fell, the pain set in. Excruciating, un-escape-able pain in my shoulders. I threw down pain killers and my boyfriend tenderly rubbed my shoulders as much as I could bear but nothing would ease the pain.  Now for those who have done yoga, you might be tempted to tell me that after your first few sessions you too were in pain. Trust me. This is different. I had 26 years of knowing what pain after a workout feels like, it feels kind of good and rewarding. There was nothing good about this pain.

So the decision was made. I will not be doing yoga again.

Zumba and walking 

As bizarre as it sounds, while I can’t handle yoga, the high impact dance class of Zumba, I love. I think the reason is I can go as hard as I wish and modify the movements to suit me and there is no judgement, no-one telling you you’re doing it wrong. And the music is fun and I find myself alternating between laughing out loud at how ridiculous I feel and choking back tears that I’m doing real exercise that I enjoy and have fun with. When I’m too sore to Zumba….I try to walk, by getting off at the train station before hand and walking home. Exercise is part of my life again. Sporadically. 

Acupuncture

Another practice I have avoided since I got sick was acupuncture. I just didn’t want another appointment, another doctor cost, another thing that reminded me I was sick. But after giving up prednisolone and having MCTD for nearly 4 years, I thought it would be worth trying something that so many people swear by. There is a niggling pain in my wrist that is really bothering me so I wanted to see if it would, at the very least help that. 

So I went along last Monday for the first time and the acupuncturist came in and looked at my medical history and said with surprise “You have Mixed Connective Tissue Disease? My mother has that!” If I hadn’t been lying down ready to be stuck with pins I would have fell off my chair. I’ve never met anyone who directly knows anyone else with MCTD. Only my rheumy. 

So I felt instantly  more at ease with her as she had an understanding of the disease. I won’t go into details of how the appointment went. I enjoyed it for the most part and will be going back regularly to see if it makes a difference. 

Well, this week it certainly made a difference. It must stir up the toxins, or make things work differently because I’ve been in pain, felt light headed and just sick, all week. While this could be seen to turn me off, I’m curious. What did all these pins or needles or whatever, do to me to have that effect on me? And if she was able to pick up on specific problems with me by taking my pulse…maybe she can do something to fix those problems.

I’ll keep you posted.