Tag Archives: Chronic Pain

The Fight Continues in the War against Scleritis

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I saw my Rheumatologist this morning to discuss the next step in my war against scleritis.  So far I have failed Methotrexate, Cyclophosphamide, Azathioprine and Rituximab.  My doctor reckons that because scleritis is rare not much research has been put into treatments so they are just trying everything until they find something that works.

Ok so the plan is either Infliximab infusions or Humira injections.  Because the treatment is expensive the hospital has to put a plan in to the expensive drug committee stating my case and hopefully they will approve one of them.  The doctor reckons that they will probably go with the infusions because you can give a larger dose at once and you can be more precise with dosing as it goes on bodyweight.  It will be a pain having to have to go to the hospital for infusions but at this stage I need to do everything I can to get rid of this nasty, painful disease before it wrecks my eyesight any more than it already has.  I already have awful vision from the Keratoconus so I really don’t need the scleritis damaging my eyes too.

I am hoping that if the treatment works it will take away the swelling that I have under my eye.  It looks awful like I have been punched in the eye and is from inflammation and the fortnightly steroid injections I have to have.  I often have a black eye after the injections too.  When I am meeting someone for the first time I really hate to look them in the eye because my eye looks so ugly. I find myself looking anywhere but their eyes which can be perceived as rude but I don’t mean it to be I am just a bit embarrassed.

The drug committee only meets once a month so it could be a week or two until I hear anything.  In the meantime I have to stop the Cyclophosphamide at the end of this week as I have been on it for 6 months which is the maximum duration as it is an accumulative dose and I am now up to the maximum dose.  It’s not working any more anyway so there is no point in continuing with it.

I will be glad to be off of the chemo and it’s associated side effects, although I know that the new med will have it’s own set of sides to contend with.

I felt that it was a really positive meeting this morning.  The rheumatologist was great; she really explained things and listened to my questions and concerns.  Let’s hope that this next line of treatment works!

The Eye Saga Continues. Scleritis & Keratoconus.

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For the past 6 weeks my eyes have been really good in terms of the scleritis.  I have had a white eye and no pain, even my vision seemed to be a bit sharper.  I was really hopeful that the Cyclophosphamide (Endoxan) was working so that I could concentrate on getting my vision better and my eyes ready for corneal transplants.

Yesterday afternoon I seemed to start a flare up, today my right eye is a little red and quite painful.  I am freaking out and a bit gutted actually because I was really thinking that this was the medication for me and things would just get better and better.  Today my vision is awful and I am really struggling.

I saw my eye doctor yesterday morning and he was pleased with my progress, then a couple of hours later I’m flaring, how is that for bad luck, it could have happened when I was at the eye doctor!

The Endoxan has been a bit of a bumpy road so far, the first couple of weeks I felt fabulous then I felt like absolute death for a couple of weeks as my blood pressure plummeted. I could hardly stand up without falling over.  We got the BP sorted out and I started to come good again, until yesterday.  Now I feel really worried that I am going to fail another treatment.

I have a swelling under the right eye and the doctor thinks that there may be a cyst in there caused by the regular orbital floor injections I have been having over the last year or so.  It looks ugly like I always have a bruised eye.  If it’s not a cyst it will probably be thickening of the tissue from the needles.  I hope they can do something about it.

Luckily I am seeing my Rheumatologist tomorrow to see what my bloods are doing and to get some feedback on my progress.  Hope I get some positive news, maybe I need a dose adjustment.

Wow we just had a snake in the office and all the girls were like OMG theres a snake, and i’m like what snake, where?  just shows how bad my vision really is.  That makes me really sad.

Cyclophosphamide Chemo for Scleritis – Eye inflammation & Pain

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Over two years on and my scleritis is still flaring continuously and at times is extremely painful.  I have failed prednisone, rituximab, metrotrexate and azathioprine treatments.

My doctors have brought out the really big guns this time, I have just been started on 100mg Cyclophosphamide daily.  Already I am feeling nauseous so I know this isn’t going to be good.

Before taking the med I was reading up on it because I like to be informed about what i’m taking and the side effects are horrific.  If the only thing that happens to me is I get nauseous and lose my hair I will be doing ok!  Yes you can even lose your hair at low doses.  One of the common side effects that is concerning me a bit is that you can get really bad cystitis and blood in the urine.  Because the drug is so toxic it can’t sit in your bladder you have to keep drinking and peeing to keep it clear.  It can’t be taking at night because it cant sit in your bladder for that long.

Well this is day 1 of the treatment, I have to go for fortnightly blood tests and see my rhumatologist again in 6 weeks.  Lets hope this works!

By the way another side effect is appetite loss, I really hope I get that one because I have medication induced weight gain and I am desperate to get some off.  I will be really happy if I get that one!

Will keep you updated, have a good weekend.

 

An Eye Update – scleritis and Keratoconus

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It’s been a while since my last post on here as I now have separate blogs for my hobbies.  Thought I would do an eye update as they are still pretty crappy.

Saw my eye doctor and rheumatologist yesterday, had an orbital floor steroid injection in the right eye.  Have a swollen and black eye appearing this morning but the scleritis pain is easing already so that’s really good.

The Rhumy noted that I have failed Rituximab. Azathioprine, prednisone and methotrexate (I’m still on the MTX but the sides are awful, I take it on Friday then the weekend is a write off).  The next step is a cyclophosphamide infusion.  This is worrying me a little because it much more hard core than anything else I have tried and you can lose your hair even at low doses so I don’t really know how I feel about that.  I know that we have to try everything we can because nothing has worked so far and I am in chronic pain, some days the pain is so great I just lay there moaning to myself.  Still it’s a big step taking such a strong chemo drug.

My vision is really variable as I have more than one problem – keratoconus, scleritis and severe corneal neovascularisation.  Some days I can hardly see at all and other days my vision is pretty clear.  At the moment I have not much vision at all in the left eye as the inflammation has made the cornea hazy.  At my eye check yesterday I was just counting fingers, couldn’t read the letters even through the pin hole.  This will clear pretty soon with the eye drops but it makes for such a hard life when you have to get up for work every morning.

I can’t even enjoy my colouring much at the moment the one thing that is keeping me sane right now is reading on my kindle, I adore reading and escaping into a good book.  I can’t read normal books but on my kindle I can have a lovely big text and manage to read, even though I only get one sentence on a page and it gives my thumb a workout changing the page every 2 seconds lol

Sorry for any typos, can’t see too well at the moment!

If you are interested in my hobbies of adult colouring and reading you can catch me over here:

www.colouringforwellbeing.wordpress.com

www.bonniesbooktalk.wordpress.com

Thanks for reading and catch up soon!

 

The Battle Continues!

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Last week my doctor changed me over from daily Azathioprine to weekly Methotrexate.  I couldn’t stand the side effects any longer and it wasn’t really doing much to help my eyes.

I am on week 2 of the Methotrexate, I spend 3 days crook as a dog (the day I take it and 2 days after), horrible but I guess it’s better than the 7 days I felt ill on the Aza.  It’s unfortunate I take it on Fridays because I spend all weekend feeling awful then I’m back to normal again for work on Monday …. Hmmmm that was a bit of bad planning!

I’m starting to wonder if my eyes will ever improve, it always seems to be one step forward and then two back.  It will be 2 years in November that I have been battling the scleritis, can’t believe how quickly time flies.  But it’s not good when you think about it, nearly 2 years and they are no closer to finding out the root cause and really my eyes haven’t improved that much either. I have days where they are so painful I can hardly stand it.

My doctor always calls me a medical mystery and his VIP patient as I’m there every fortnight for my treatment.  I guess when you have something relatively rare happening in your body that they can’t solve you do become a bit of a medical mystery.  I have seen a rheumatologist, and probably about 6 different eye specialists and I’m still suffering with vision loss and chronic daily pain.  The next step is the immunologist; my eye doctor has written a referral so I will see what they have to say when I get my appointment through.

I guess I just need to keep going, keep my mental health well and hope that one day I get some definite answers and a solution to the problem.  I think the key for me is staying well mentally, if i’m good in that department I can cope fairly well with the pain and the daily struggle to see. I’m really working hard not to fall down that slippery slope to depression, so far so good!

 

To Colour or Not To Colour?

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I have a dilemma!

Colouring is really good for my wellbeing and mental health, it makes me happy and relaxed and I really enjoy it.  As you know I have severe eye pain and vision problems which quite often make doing day to day tasks difficult.

My problem is do I colour on my really bad eye days to make myself feel better and risk ruining a picture that I have put everything into and really like or not colour on those days and potentially feel bad.

Over the last couple of weeks I have ruined two beautiful pictures that I spent hours and hours colouring because my eyes were bad and I was in pain.  The pics turned out so awful I didn’t finish them.  Doing this seems a waste of my time,
colouring book pages and supplies.  Or is it just good therapy, good practice and don’t worry about what I produce?

I don’t know, I’m in two minds really, I colour for my wellbeing mostly, but I also colour to show my friends because I love it and am quite good at it and produce some good work.  Showing my friends and IG followers makes me proud as
though I have achieved something, and it makes me feel very good to get compliments and comments, which is also good for my wellbeing.

I guess I need to take it one day at a time and gauge how bad I feel and how much I need to colour for therapy.  I could keep a separate book for days that I just need to colour for my wellbeing so that I don’t mess up any more of my favourites. 

I dunno, it’s complicated being me!

Beautiful Reaons to be Happy

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This is so true, love this quote.

I have got so many health issues at the moment and I’m in daily pain but I am still so happy.  It really could be a lot worse.  For some crazy reason my mental health is great which is such a surprise considering the crap I’m going through.

I am in a really good place right now and I’m very thankful for that. When the pain wakes me up at night or I can’t see because my vision has gone all hazy I am thankful for the things I can still do to help myself and I’m thankful for the support of my beautiful family.

Life is good despite the hardships and I’m thankful for that.

Chronic Pain Is Wearing Me Down But I Am A Warrior!

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I like this quote.  As a person who suffers with chronic pain every day it feels real to me, I can really relate.

Every day I go to work and put a smile on my face when inside I am crying in pain.  Some days are worse than others but I have some level of pain every single day without a break.  It really starts to wear you down.  I often moan a bit at work, but my colleagues have no idea of the pain I am in every day.  I get up in the morning and put that brave face on and it stays there for the duration.

My partner is amazing, even when I am trying to put a smile on my face she knows when I’m not doing so well.  Like the quote says she must see it in my eyes.  Oh yes, the moaning out loud probably gives her a clue too!

I rely a lot on strong pain killers but do realise this shouldn’t be a long term solution.  I often try to find other solutions to my pain but giving myself a pep talk and practicing mindfulness doesn’t really cut it when I am laying there in agony.

I try to take it one day at a time.  I used to fret and worry about how long this illness would last but now I know that there is no value in that it just makes me depressed.  Now I just get through each day and relax in bed at night knowing I have conquered another day.

This morning I am sitting in a coffee shop enjoying a skinny cappuccino whilst writing this post.  A positive thing to come from this is the realisation that I am much stronger than I ever give myself credit for.  I don’t let my pain stop me doing things and I live a full and very happy life.  I am a warrior!

How Do You Cope With Chronic Pain?

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Today I’m thinking about chronic pain and I was looking for some ways to cope with daily severe pain and I found the suggestions below on the American Psychological Association website.  I had a read and think that some of the ideas are very valid and would help with certain kinds of pain but it’s not really that helpful to me.  Scleritis is a type of all consuming, agonizing pain that just takes your breath away.

For example when I feel like someone is grinding broken glass into my eye with the heel of their boot it’s not really helpful to me to be thinking about taking up a hobby or telling myself that I am uncomfortable but working towards making a way to deal with it.  In that moment when I am in agony nothing helps, I just want to curl up into a ball, take some endone and forget about everything.  I can’t think when I am in that much pain, I can barely breathe let alone think about positive stuff.

One thing I would like which is suggested here would be to find a support group or forum.  Scleritis is pretty uncommon so there’s not really anything out there that I have found so far.  Found some old threads but nothing up to date.  I think it would help to speak to other people with the same illness and see how they cope with it.  I will keep searching and maybe start up a new thread and see what happens.

I have realised that there is a very big possibility that this could go on for years so I need to arm myself with as much information as I can get as if I have to deal with this hideous pain day in day out for years my mental health will suffer.  I need to find effective ways to cope fast.

For those interested the American Psychological Association offers the following tips on coping with chronic pain:

Manage your stress. Emotional and physical pain are closely related, and persistent pain can lead to increased levels of stress. Learning how to deal with your stress in healthy ways can position you to cope more effectively with your chronic pain. Eating well, getting plenty of sleep and engaging in approved physical activity are all positive ways for you to handle your stress and pain.

Talk to yourself constructively. Positive thinking is a powerful tool. By focusing on the improvements you are making (i.e., the pain is less today than yesterday or you feel better than you did a week ago) you can make a difference in your perceived comfort level. For example, instead of considering yourself powerless and thinking that you absolutely cannot deal with the pain, remind yourself that you are uncomfortable, but that you are working toward finding a healthy way to deal with it and living a productive and fulfilling life.

Become active and engaged. Distracting yourself from your pain by engaging in activities you enjoy will help you highlight the positive aspects of your life. Isolating yourself from others fosters a negative attitude and may increase your perception of your pain. Consider finding a hobby or a pastime that makes you feel good and helps you connect with family, friends or other people via your local community groups or the Internet.

Find support. Going through the daily struggle of your pain can be extremely trying, especially if you’re doing it alone. Reach out to other people who are in your same position and who can share and understand your highs and lows. Search the internet or your local community for support groups, which can reduce your burden by helping you understand that you’re not alone.

Consult a professional. If you continue to feel overwhelmed by chronic pain at a level that keeps you from performing your daily routine, you may want to talk with a mental health professional, such as a psychologist, who can help you handle the physical and psychological repercussions of your condition.

Be Happy!

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Thought I would choose a happy quote today, my eyes are still very sick and I feel pretty crook but I am trying to be positive. I’m fed up with being miserable so instead of being miserable and in pain, I’m going to be happy and cheerful and in pain!

Wonder if I can pull it off.

Have a wonderful day all, there really are lots of beautiful reasons to be happy ☺