Azathioprine, steroids and symptoms resurfacing.

I went to my last set of blood tests (Friday 11th May) with low expectations of any change to the results. Tuesday 15th, the doctor rang me and if I’m honest my first thought was that something else had gone wrong. But, he called with good news, my white blood cells and neutrophil levels had returned to normal! By afternoon, I was nearly skipping into the surgery to pick up my Azathioprine, the dose has been reduced from 150mg to 125mg. I can’t say for definite why this all happened but I believe my body just couldn’t tolerate the higher dose of 150mg. Before all of this happened, I thought Azathioprine was borderline useless. It wasn’t until they were abruptly stopped that I realised just quite how much they helped.

Thursday 17th: I received a call from my Lupus nurse. It basically consisted of her telling me I could restart Azathioprine and my blood tests can go from weekly to fortnightly. I happily cancelled my blood tests for the following day. Weekly tests get beyond tedious.

Friday 18th: I reduced my steroid dose from 15mg to 10mg. I will remain on this dose for just 2 weeks before reducing again to 5mg. The first side affect I encountered was hunger and I can fully understand why people gain weight – it’s insatiable. You could have put an extra large mix grill in front of me and I’d have probably demolished it (I never eat mixed grills, I don’t think I’ve ever ordered one). But thankfully, the hunger feeling seems to have disappeared. The next slightly bizarre side affect was and still slightly is, a sore tongue. This only really bothered me when I drank cold drinks or when I was cleaning my teeth. The final side affect that still comes and goes is feeling HOT. It mostly happens at night which disturbs my sleep…not totally helpful for someone who can’t sleep at the best of times.

When I first started steroids, I felt incredible. I felt like I could do task after task without becoming instantly fatigued or sore. However, last week we had family over which put me out of my usual routine and I was doing too much to be able to cope. My energy levels rapidly declined and small tasks started to feel like I was being asked to climb a mountain. Body aches were the next symptom to resurface, it was like I had been dipped in concrete, an overwhelming heavy feeling. My headaches had reappeared, with sharp pains around the eyes. And, the dreaded joint pain started to radiate through my joints, even the tiny joints in my feet hurt. On Saturday, I felt like my body was about to give up, just walking to the toilet was too much. By the afternoon, I had no choice but to go back to bed. I slept all afternoon, even through my Grandfather and Dad drilling through the wall below my bedroom. It was heart wrenching and frustrating to go from feeling well on steroids back to feeling so sore and poorly. It just proves how powerful Lupus can be and if it demands to be felt, it will.

My joints are still very sore and I’m still very fatigued with body aches. But, I’m going to use this week to relax and recover. It can take anywhere from 6 weeks to 3 months for Azathioprine to fully kick in, obviously I’m hoping it doesn’t take long at all. But, we’re at least back on the right track.

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Steroids: what are they like?

I’m nearly at the end of my first week on steroids, it’s time to give my initial thoughts on the dreaded medication. When I initially started them, I spoke to a few people in the chronically ill community about their experiences with steroids. There wasn’t one person who wanted to be on them, despite knowing they would help. Steroids work by reducing inflammation and they also suppress the immune system – which is why they are commonly used for auto immune diseases.

Steroids tend to raise the level of glucose and sugar in the blood and they also cause an insatiable appetite – those combined can lead to the side affect that nobody wants: weight gain. I’m being strict with what I consume, carbohydrates turn into sugar, so anything with a high carb content has been eradicated from my diet. The only carbohydrates I eat is what naturally occurs in fruit and vegetables. I have significantly upped the amount of protein I eat too. It’s a complete change around for my diet, I usually consume more carbs than I do protein. Despite constantly feeling hungry, I haven’t caved to it yet. I ignore the hunger pangs and only eat at meal times…I guess that’s where being stubborn comes in handy. Out of everything I’m used to eating, all I miss is a cup of tea with one sugar and a handful of biscuits.

However, I am suffering from two side affects. The steroids are making my body temperature rise and I feel unbearable hot, this mostly happens at night but it has occurred in the day time too. The second side affect is disrupted sleep (as if my sleep couldn’t be anymore disrupted), I definitely think the body temperature has a part to play in this too. I constantly wake up through the night or it takes me hours to settle down and sleep. That being said, I’d rather have those two side affects than any others.

Despite having disrupted sleep, the steroids have worked wonders for fatigue. I seem to be able to do a little more in the day time. Not only that, but I can concentrate on things better and my brain fog isn’t as bad. However by late afternoon I start to become tired again, but it’s probably down to me taking advantage of not being so fatigued. I’m still having joint pain, but it’s not as constant and it usually starts in the early afternoon and it intensifies a little by early evening. The steroids haven’t worked for my headaches yet, but whilst reading the side affects, it said they can cause them – so I’m not entirely sure if it’s a side affect or lupus.

I would say that so far, the only great improvement I feel is the fatigue. Which is okay with me, fatigue is a symptom I can’t stand or get used to. If my consultant decided to keep me on the steroids for longer than expected, I wouldn’t complain for this reason. But, there’s still time for the steroids to start taking affect on the other symptoms – time will tell. My recent blood tests show that my neutrophil level is still low, so I still don’t have a clear idea of how long I’ll be on steroids.

I’m (reluctantly) on steroids.

The break from Azathioprine continues, if I’m honest, it’s lasted much longer than I had anticipated. And, to be frank, it’s been an utter nightmare. It feels as if nobody is communicating with each other, it’s almost like they have no idea what’s happening with my treatment plan.

My Lupus nurse called me on Monday 23rd April, to tell me I had to stop Azathioprine (by this point, I’ve been off the medication for 2 weeks). She told me that my white blood cells have returned to a normal level, but my neutrophil level remains low. She said she was going to talk to my consultant about restarting Azathioprine and that she would call me back in a few days. By the Friday afternoon, I hadn’t received a call which prompted me to call her – it went to her answering machine.

Wednesday 2nd May: there still was no call back from my Lupus nurse. I tried to contact her again. It went to her answering machine but this time there was a message alerting me that she was on annual leave until next week. To get a message to my consultant, I next tried calling his secretary and hallelujah, she answered! I had to tell her the full story: no Azathioprine and how long I’ve been off it, low white cells and neutrophils, frequent blood tests, Lupus nurse called and then didn’t call back and finally that my symptoms are progressively worsening from being under medicated. She noted everything I said and told me she would speak to the consultant and call me back.

Whilst I was waiting for the call back, I logged into my patient access app and looked back at my neutrophil results from past to present. I realised they’ve been low before and fluctuate quite frequently:

Due to this realisation, I was getting pretty cocky that I’d be back on Azathioprine that night. The secretary called me back, she re-confirmed that my white blood cells are back to normal but my neutrophil level remains low. And, because of that, the consultant is continuing the Azathioprine ban. But, he would like me to go on steroids to control the worsening symptoms until the neutrophils are back to normal. I paused slightly and told her “I don’t want to take steroids”. I mean, bless this woman, I’m talking to her like she can change my consultants decision. She sounded quite sympathetic and told me “Doctor wouldn’t prescribe them if they weren’t necessary”. I eventually agreed to let her fax the care plan to my GP. She told me to call the surgery in 15 minutes to see what time they’ll be ready to pick up.

I started sorting the laundry out and before I knew it, I was crying because I REALLY don’t want to take steroids. I started to wonder, why everyone is suddenly making a song and dance about low neutrophils when they’ve been low in the past? I logged back into the patient access app, this time I looked at my white blood cell results past and present – they also fluctuate and in the past, both my white cell count and neutrophil levels have been low at the same time. But, I remained on Azathioprine.

An hour passes by the time I called the GP surgery, there’s no fax – they said to call again in an hour. I kill a further 2 hours and call again but there’s still no fax. By this point, after spending much of my day chasing people up and my patience hanging by a thread, I told them I would call back in the morning.

Thursday 3rd May: I called the GP surgery again and there was no fax. I would class myself as a chilled out person, I don’t get annoyed easily, but this situation was really pissing in my cornflakes. I called the secretary back, she was annoyed too. She sent the fax within minutes of getting off the phone to me and also sent a hard copy. She said she would call the surgery and re-fax the care plan and told me to call them again in 10 minutes. I left it an hour and when I called back, praise the Lord, they had the fax!

I’m not scared of the steroid itself, it’s the side affects: moon face and weight gain. I only have one logical explanation for this fear, the eating disorder I suffered as a teenager. I have been told I look tired and my under eyes are becoming dark, so the worsening fatigue and pain is starting to show – steroids are the only thing on the table for me at the moment so I have to (reluctantly) accept them. Mum and I researched what the best diet is whilst taking steroids: low carb and high protein. Although my dose is low, I’m not taking the risk and eating how I usually do. However, I have made it clear that if I don’t like them, I won’t keep myself on them.

I seriously didn’t think it would drag on for this long or that I’d end up on steroids. I’m at my wits end. I didn’t realise how much Azathioprine did for me until I was taken off it.

The dose: 15mg for 2 weeks, then reduce to 10mg for 2 weeks and finally to 5mg for 2 weeks.

A week without immune suppressants…

It’s been over a week since my last dose of Azathioprine and according to my research they were out of my system within 2 days. At the time of stopping Azathioprine, my white blood cells were reading at 3.3. However, I had the levels re-tested again on Friday (13-04-18) and they are now reading 2.8. My GP, on Monday, assured me that the levels would return to normal quickly. Instead they have fallen, which concerns me but, I seem to be the only one concerned about it.

I was fully aware that I would suffer due to being under medicated and I knew Lupus would drag me down quickly. Today has been my hardest day so far. My headaches, which were greatly reduced by the Apixaban have returned, it’s like a constantly thud in my head and there’s sharp pain behind my eyes. My joints, especially my knees and elbows have pain radiating through them, I can’t take my strong painkillers because they induce headaches – which would just turn my current headache into a migraine. My feet and fingers have lost feeling quite a few times which ended in pins and needles.

Around lunch time, I had severe pain on the left hand side of my back, just under the ribs. It was so severe that it reduced me to tears and made me nauseous, it seems to be coming in waves but so far, nothing as bad as earlier today. It was as if someone was stabbing me.

Fatigue has been mounting up, I have no desire or motivation to do anything but sit or lay. My eyes sting and burn and small tasks are beginning to feel like impossible tasks. I’m starting to feel like a zombie, I look awake and alert but I don’t feel it.

It scares me that I could and probably will get worse, I’m heading into my second week being under medicated. You can feel Lupus pull you in but you have no idea how far it’ll pull you, and that’s the scary part. But, this is what happens when you give Lupus free reign to be a dick.

I have blood tests this Friday to re-check my white blood cell levels. I’m hoping they will have risen but due to the drop, I’m dubious that it’ll be enough to re-start the lowered dose of Azathioprine.

Rheumatology appointment – 15/3/2018: a new medication.

I’m sure my appointments come around quicker each time. The time between my last appointment and this one was 4 months. This appointment was mostly centred around Antiphospholipid Syndrome.

As usual, the appointment started with the nurse for the usual checks. My weight and blood pressure were fine, but my urine is showing a possible infection. I’m unsure if I still have protein lurking in it, the nurse was concentrating on the possible infection.

As stated above, this appointment was mostly about Antiphospholipid Syndrome, I’ve never had an appointment that was nearly dedicated to this illness, people assume (and I did for a while) that all my symptoms are down to Lupus. In all honesty, this was an odd appointment to me, I was barley asked any questions. He asked how I felt since the upped dose of Azathioprine and when I replied “honestly…I feel no different”. And, that’s when the appointment changed direction to Antiphospholipid.

It isn’t new knowledge to me that my consultant wants me to take warfarin or something very similar to control my APS. For over a year, he’s believed my headaches are tiny blood clots on my brain that fizzle out on their own. For some reason, I have a great fear of Warfarin, the thought of taking it petrifies me. Which has resulted in a firm head shake at my consultant numerous times, essentially, I have denied treatment.

However, at this appointment, we found a middle ground. A medication called Apixaban, which has replaced my dose of Aspirin. Apixaban is an anticoagulant, which means it will greatly reduce my risk of DVTs and PEs. I take two 2.5mg tablets a day, one in the morning and one at night. My consultant believes the symptoms that aren’t being relieved by my Lupus meds, aren’t Lupus symptoms at all, but symptoms of APS. We’re hoping Apixaban will help relieve headaches and some degree of the fatigue. I have been given a months supply to see how I cope on it. The meds come with an alert card that needs to be kept on me at all times.

Another point of discussion was the back pain I’ve had for the last few months, it differs in severity. I also mentioned that I can do my first wee of the day at around 4pm. He said the urine sample I provided will be sent to the labs for further testing. He also wanted to check my full blood count, the last couple of times my blood count has been slightly low. If it continues declining, my dose of Azathioprine will be reduced back to 100mg. He will write to me with the results of both, but the nurse recommended I ring my GP to check if I need antibiotics, which she said I most likely will.

He scheduled us to meet again in 3 months time.

New Year, New Update.

I firstly would like to apologise for my lack of writing but Christmas, New Year and flares got in the way. And, if I’m honest I’ve suffered a bit of writing block, I have attempted at least 4 posts but failed to finish and post them. I would read them back and think “no, that’s too boring” or “that’s too long” and even “that’s just poorly written”, maybe I’m too self critical.

My last post was December, it covered my Rheumatology appointment and my dose of Azathioprine being increased from 100mg to 150mg. My blood tests had been moved from 3 monthly to 2 weekly. The results have all been fine and my body seems to be accepting the higher dose and as of the end of January, the blood tests have moved to once a month. I haven’t noticed a difference, I haven’t had any side affects but I also don’t feel better. However, and I have covered this before, Azathioprine can affect teeth and in January I had another wisdom tooth pulled out and 2 fillings…so I say I haven’t had any side affects but I can’t be too sure that the dental work needed was a result of the increased dose.

Although I say I don’t feel better, the dose was increased at a rather busy period of time…Christmas and New Year. I do like Christmas, I really do but the run up to it is quite literally exhausting and painful. There’s the shopping, which resulted in carrying multiple heavy bags that pulled on my joints – thinking back, I had to take naps after every shopping trip, they all floored me. Then there’s the wrapping, which seized my back and fingers up, just sitting at a table on a wooden chair caused mayhem to my body. And, finally getting out and visiting people with their gifts…an enjoyable time but exhausting. I spent New Year with my boyfriend and his family which was lovely but unfortunately by New Years day, the whole month had officially caught up with me and I was at the point of pain and exhaustion that I just wanted to curl up and cry. I had started flaring on Boxing Day, so to make it to New Years Day before feeling like that was quite the triumph. Despite the flaring, I had a lovely festive period with my nearest and dearest.

I haven’t got any expectations for 2018, I’m just taking it as it comes, which I’ve realised is the best thing to do when you have a chronic illness. I haven’t set any New Years resolutions, I never stick to them but I have made some slight changes. My first change is writing the symptoms I’ve had that day in a diary, I’m hoping it helps me to see a pattern in symptoms – which I can then tell my Rheumatologist, which in turn might help future treatment plans. Other recent changes include taking the supplement Evening Primrose and increasing my dose of Vitamin D. It was last year that my GP had told me to take it, but whilst in Boots, I found a higher strength of it and to my research, during winter you need a higher dose. Although, I will more than likely keep myself on this higher dose all year round.

I have recently had some new symptoms. In recent months I have a dull pain almost daily in my shoulder, usually my right but it often spreads to the left. I recently had a bout of what I presume was vertigo, I was sat eating and all of a sudden my hearing went, the room was spinning and I felt so hot…it honestly ruined my meal and I bloody love chilli. I had to go and lay down and that’s when I noticed my hands were trembling and I started to feel nauseous. The next new symptom prompted some worry (95% of the worry stemmed from my mother) but it’s pain in my back that can sometimes spread to my abdomen. When I pointed the location of the pain my mum said “that’s the kidney area, that’s concerning me!” and she even mentioned going to A&E when it was making me walk hunched over…but I refused due to my blood tests for kidney function being fine, I also tested my urine and it came back fine. I still get the pain daily, and since nothing is flagging up in tests, I think it’s just another Lupus thing that I’m just getting accustomed to. I can see why she worried though, kidney complications are rife with Lupus patients.

This past Sunday was hard for me, I found a new dog walk for my boyfriend and I, it was a woodland walk but I didn’t research it enough and it turned out to be rather long and quite hilly in places. We turned back when my left hip started to hurt and on the way back my knees and elbows started to hurt. I began to feel as if I was going to faint, a sensation that frightened me, it felt like my legs wouldn’t carry me further and that I would just keel over at any given point…away from home. That night I sat and held back tears because I took my mind back to when I was healthy and thought “Once upon a time, I would have finished that walk, we didn’t even make it to the half way point. I’m still paying for it now, my joints have sharp pain radiating through them, I ache all over and my head is pounding…not to mention the fatigue.

I shall leave this update here before it gets far too long and you lose interest. I will be putting my brain to use and thinking of new posts in the mean time.

 

Hidden Illness, Hidden Judgement.

I’ve been told “everyone is judged” multiple times since being diagnosed with Lupus and it’s a statement that will always get on my last nerve. I agree, everyone is judged at some point in their lives, but it’s usually over things they can control and have the power to change. We are judged for every little thing we do or do not do, unless you have been judged for something beyond your control, left to feel like you are worthless, useless and at the bottom on society, do not tell me “everyone is judged”. I will not accept it and I will not accept it from a person who has never experienced life with a debilitating illness or disability.

In a bittersweet way, I have experienced life being both healthy and sick. I say bittersweet because I can take my mind back to how easy life was and how I used to be able to work long hours and do task after task. It wasn’t until I became sick that I realised that the world is catered for able bodied people and that society is judgemental. Earlier this year, I went to pick my prescription up, an abnormally large bag of pills for a 22 year old. I got on the empty bus with 3 other people, with my prescriptions in hand and sat on the seats that are dedicated to the elderly and disabled, to which a woman loudly said “I always save those seats for those who need them” to another passenger. That was my first experience of being judged by a stranger in public, the only reason I used those seats on that day was because I was in sheer agony, agony that cannot be seen. If I was in a wheelchair, would she have said the same thing? If I had crutches, would she have said it? I have heard many stories from others who suffer invisible illnesses, stories about how they are harassed and embarrassed by strangers when they use a disabled parking space despite being a blue badge holder, because the stranger can’t see anything wrong.

Judgement sticks with us, like it has for me with the woman on the bus, it doesn’t matter how much pain I’m in, I will now no longer use the seats for disabled people even though my illness is covered by the Disability Act and I have a right to use them. It imprints fear into us, there’s thousands, probably millions of invisible illnesses sufferers that choose not to leave their house for the fear of being judged, harassed and embarrassed by people who they’ve never met, by people that could never fathom the enormity of their health issues. The woman on the bus looked at me as a healthy but lazy 22 year old woman who couldn’t be bothered to walk to the seats for able-bodied people.

I’m tired of it, sick and tired of people being judged because they are different. People have lost the ability to have compassion, we are a self-centred, unsympathetic and judgemental society. I was watching a day-time programme and they had a woman on with one arm, she stated parents shy their children away from her in case they find it scary. Why aren’t parents teaching their children that no two people are the same? Why are they not teaching their children about disabilities? Why as a society are we tolerating this behaviour to the sick and disabled?

The title of this post says ‘hidden judgement’ because, unless you’ve been through it or have a close friend or family go through it, it is hidden. Able-bodied people are oblivious to it, why wouldn’t they be? They aren’t sick or disabled, the world is an easy place for them. They don’t have to strategically plan days out or holidays, making sure the establishment has disabled access and if the transport is sufficient for their needs. Their lives don’t revolve around countless hospital appointments, medication and never ending pain. They can leave the house without fear of being embarrassed by strangers. But, it is an issue to them and an issue that can be helped if they just opened their narrow minds. It isn’t the able-bodied people, the wealthy or those who claim to be understanding that I see offering a helping hand to those in need, it’s the people with nothing but the clothes on their backs or the people who are at breaking point with their own issues that offer that helping hand or shoulder to cry on.

I don’t understand how people shy away from disabilities or illness, is it because their scared and don’t know how to confront it? There’s nothing to confront, you treat the disabled or sick person how you would anyone else. How difficult is it to not judge a person? What happened to equality? All they want is to be treated the same, to not feel like their at the bottom in society and to not live in fear.

I now understand that it’s not healthy, able-bodied people that make sacrifices but those who suffer illness or disability. Frightened to cancel plans with their own family or friends for the fear of upsetting them, forcing themselves through social events or activities when all they want to do is be within their home comforts with painkillers. I have seen people get frustrated and angry with me for cancelling plans, because they cannot see the reason I have given for cancelling.

Living with illness or disability is isolating and often dark enough without the added judgement from strangers or even people close to us. As a society we need to embrace and celebrate what makes each individual different, to not judge people for their differences and to treat the ill and disabled how you would treat anyone else.

 

No sleep for a week…

I think it’s still a crazy concept to some people that someone with crippling fatigue does struggle (all to often, might I add) with insomnia. Sleep issues are a running issue with Lupus sufferers, we either sleep incomprehensible hours or not at all. Last week, I was on the not at all scale – I have never experienced insomnia that bad before. Insomnia is highly irritating for anyone but, for someone with a chronic illness and chronic fatigue, insomnia doesn’t half do some damage.

There’s no psychological issue for my insomnia; I’m not stressed, upset or overthinking. Sometimes, there is a physical reason and that of course is pain. Insomnia by pain is something I can usually help – strong pain killers will usually numb the pain enough to be able to sleep. Other times, I just cannot sleep which is how last week started out but towards the end of the week, it was a combination of both pain and just not being able to fall asleep.

It takes just one night of inadequate or no sleep to cause me to flare. My joints became painful and by the weekend, I was walking around on a swollen knee and applying Tiger Balm on my joints so now I have stained PJs and owe my dad some Tiger Balm. I had exhaustion induced headaches, my whole body ached like I’d just ran the London Marathon, my appetite vanished into thin air and was replaced by nausea. My usually chilled out personality was replaced by a short tempered monster, which I think is fairly acceptable given the circumstances around it. By Friday my rule of ‘don’t cry over Lupus or what it does or causes’ went out the window – I sat and cried for sleep from Friday to Sunday. I probably looked like a crazy woman curled in a ball on the sofa at 4am crying and saying “please just let me sleep” to the air.

I tried everything; reading, warm drinks, not looking at my phone or the time, counting sheep, counting back from 100, cleaning (which was ended quickly by feeling like I was going to faint), over the counter sleeping tablets (usually effective on me), I tried codeine and tramadol and for a second of desperation I even thought of mixing the two opiates to knock myself out (I didn’t try this in the end in case I actually went into an eternal sleep). Towards the end of the week and this isn’t a joke, but I was debating asking my brother to just punch me so hard it knocks me out. I even found myself saying “it’s a good job they took the bridges down because I would of jumped off the f*cker by now” and that’s what pure sleep deprivation does to you.

By some miracle, I lasted a week…7 whole bloody days…that’s 168 hours on no more than 10 hours sleep. I spent most nights looking at the living room wall, tracing the pattern with my stinging eyes, wishing my dog was downstairs to cuddle, watching the seconds tick by, crying and cursing myself in anger. 3am on Sunday, well the small hours of Monday, I decided I couldn’t take anymore and was going to see the doctor. In a mad rush, I was looking for money because I had none on me for bus fare and ironing clothes, I’m still surprised I didn’t run the iron over my fingers in my exhausted state. Once the receptionists opened the doors and everyone was clambering in to get on the doctors list first (it’s a walk in system) a very kind lady stopped and looked at me, probably taking pity that I genuinely looked beyond exhausted and pointed at the door and said “you go first”, so thanks to her, I was lucky to be 3rd on the list.

“How can I help you?” he asked me and all I could say was “I haven’t slept for a week” he was probably looking at me thinking ‘no shit’. I explained how it was making me flare badly and told him “I think I’m losing my mind over it”. He gave me sleep exercises for the future and prescribed me Zopiclone and he said he can guarantee tonight I’d sleep soundly. As I was gathering my things and saying thank you he showed me a lovely little injection, so I was also stabbed with this years flu jab as well…two birds with one stone and all that.

He was right, I did sleep solidly. I took the tablet and before I knew it, I was waking up this morning. I didn’t even use the pillows and the duvet was only on my legs but yet, it was the best night sleep I’ve ever had. The flare is on-going but it has got a little bit better with sleeping last night, it will take me a good few days to recover from it. The Zopiclone left me quite tired today, especially this morning but I expected that because I used to administer it at work and the patients would sleep on and off during the day that followed the pill being taken. I didn’t mind though, it was an excuse to get more sleep.

I never want to experience insomnia that bad again, and the next person that tells me their suffering badly with insomnia will get the biggest sympathetic hug from me. Sleep is not for the weak, it is a wonderful thing that I love and missed so much. Zopiclone, you bloody beauty, thank you for knocking me out so my brother didn’t have too.