Tag Archives: Autoimmune disease

The 347 day battle rages on

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I am now 11 months in to my journey with scleritis.  I never in my wildest dreams thought for one second my eyes would still be flaring.  I thought a few weeks on the meds and it would all be over.

Approximately 347 days later I still have severe eye pain, redness, photophobia and swelling around the eye, I always look like I have been punched in the face.  I don’t want to look people in the eye when I am talking to them in case they think I have been bashed up.  Some days are worse than others but it’s a constant no relief kind of pain of varying degrees.  The pain of scleritis is intense and relentless and unfortunately chronic headaches come with the eye pain.

I have been admitted to hospital, been on steroids and chemotherapy drugs, had many eye injections and had loads of tests and they are no closer to finding a cause or a resolution.  The next step up from the immunosuppressant chemo meds are biologics.  Biological products often represent the cutting-edge of biomedical research and, may offer the most effective means to treat a variety of medical illnesses and conditions that presently have no other treatments available.

I am HLA-B27 positive which is a genetic thing that makes me predisposed to getting autoimmune diseases like scleritis.  There may not be an underlying cause but my GP feels that there will be something there because whatever we throw at it doesn’t fix it.  It also brings in to doubt my fibromyalia diagnosis ….. are these symptoms part of an underlying disease and not fibromyalgia at all?  I think it probably is and they just haven’t figured it out yet.  Wish they would hurry up and find something I am so over the pain every day, not to mention that my eyes look a mess.

Unfortunately I also have corneal neovascularization in the left eye, which means I have blood vessels growing into the cornea.  The cornea is meant to be clear so the blood vessels are causing hazy vision almost like a cataract.  This means that I have to wear my scleral lens in the right sore eye to be able to see (keratoconus has made my vision extremely bad 20/450).  Not ideal to wear a lens in a sore eye but I have no choice I can’t afford to take 347 days off of work!

Fortunately throughout this journey my mental health has stayed pretty stable, could be a whole lot worse!

All I can do at the moment is continue with the painkillers (endone – oxycodone) and try and get through each day one at a time.  I have a feeling that this journey is going to go on for a while yet.

Medic Alert Bracelets

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I saw my rheumatologist on Monday and they have changed me over from Methotrexate to Azathioprine (Imuran).  Imuran is an immunosuppressant which will kill off my immune system to hopefully stop my immune system attacking my eyes. Reading the leaflet in with the med is quite scary the side effects are pretty horrible.  Let’s hope it helps my eyes and I don’t have too many side effects.  I will have to be careful around sick people and I need to wear sunscreen when I go out as I will be more prone to cancers.

I am on 50mg for two weeks, and then I get a blood test to make sure my bloods are ok then I go up to 100mg and then have another blood test two weeks later. Then I see my rheumatologist for a review.

Being on these strong chemo meds really got me thinking yesterday, if something happens to me and I have to go to hospital nobody would know the cocktail of drugs that I am on, many of which interact with other drugs, in particular the Imuran.

As I result of my thinking (oh why does thinking always cost me money!), I found via Google search a company called Medic Alert Foundation. You wear a bracelet with a telephone number to call and your membership number on and they hold a database with all of your medical history, drugs, next of kin, doctor’s details etc.  In the event of an emergency they can be contacted by medical personnel who will be able to get my medical details.  There is a yearly membership fee to stay on the database but the cost is negligible.

I thought this was a great idea, I didn’t like the cheaper stainless steel bracelets, I figured that if I was going to wear this bracelet every day I would have to really like it so I got a pretty sterling silver one.

It will give my family peace of mind to know that in the event of an emergency I can be taken care of properly because the medical team will have access to my history.  Makes me feel better too, kind of like a security blanket.

The bracelet will be with me in the next week or so and I have completed all of my details in the database so I am good to go ☺

A New Gadget (Soup Maker)

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Yesterday, I got a Kambrook soup maker in preparation for my soup diet.   I am so happy with it.  

Today I made pumpkin and bacon (smooth) and tomato, capsicum and bean (chunky).  It was so easy,  I just cut up all the veggies etc,  put them in the soup maker with the stock and 21 minutes later out came the most delicious soups.  it was no effort at all.

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The machine was really easy to clean too, nothing stuck to it.  I washed it out with warm soapy water,  rinsed and dried, it only took a couple of minutes.

So we are having soup for lunch and dinner all next week to try and lose a couple of kilos.   No snacks or naughty stuff, just a piece of fruit to go with our smaller lunch time serve of soup. Surely we will lose some weight just eating wholesome soups made out of fresh veggies,  beans and grains. 

We will of course be walking most nights too.  We committed to that when we got our new Fitbits a couple of weeks ago.

I have to remember to weigh myself in the morning,  I always forget then could kick myself because I don’t know how much weight I lose,  if any. I am sure I will remember because I am excited about it!  I think I will measure myself as well.

I watched a show about juicing a couple of weeks ago and the guy who was doing it cured his auto immune disease by cutting out processed and junk food.  I am hoping by eating clean and wholesome veggies I can help my auto immune disease (scleritis). It would be so great if I could reduce the symptoms or get rid of it completely just by clean eating.

I can highly recommend the Kambrook soup maker,  I am really happy with it.

Gonna Have a Crazy Eye for a While

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4 days after the Avastin injection my eye is still looking pretty crook, got a lovely shiner to match the red eye.  Saw the eye doctor yesterday for a check up on my crazy looking eye.  Aparantly a subconjunctival hemorrhage is quite common after an Avastin injection, but the doctor was very impressed with mine, usually it’s a minor problem but mine is the biggest bruise she has seen in a long  time.  As well as the bloodshot eye I have a proper black eye underneath too.  Unfortunately it can take around a month for it to clear up so I am going to look like I have been in a pub brawl for a while longer.

I need to get over my shyness with it, I have been hiding out in my office at work and avoiding people because it looks so horrible but if I’m going to be living with it for a while I need to get out there with my head held high and not worry about it.  Perhaps I should make up a cool story about how I got it instead of a boring old injection!

I am hoping the I will be able to get my lens in that eye in the next few days,  I was hoping for today but it is just too sore still.   It has been really difficult at work wearing just one lens. I am managing on the computer OK as I have the font really big but I am finding reading paperwork really challenging.

The rhumatologist has increased my methotrexate to 15mg with a view to raising it to 20mg in about 4 weeks if my bloods look good.  Hopefully will finally be able to get off of the prednisone.

I just want to get rid of the scleritis and get relatively normal eyes back (as normal as a keratoconic eye can be).  This last 7 months has been a massive roller coaster for my eyes.

Have a good weekend all.

Feeling Crappy & Bipolar

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There’s that saying that there is always someone worse off than you.  Very true, but that thought really doesn’t make me feel any better when I am having a really crap day.  When I am feeling good it’s easy to have sympathy for orphans, neglected animals or disabled people, but today all I care about is me.

Why me? I’m thinking, I must have been a really hideous person in a previous life to be saddled with all of this crap.

My eye hurts, I can’t wear my contact lens so can only see out of one eye, I have a crazy headache and I really don’t want to be at work.

What can I do to soothe myself and feel a little better?

I’ll tell you what …. Prescription pain drugs.  Forget about the meditation, mindfulness and all that other self-help stuff, today I need the hard stuff.  I need to pop a pill and forget about it for a few hours.  I just want to feel normal, just for a bit, is that too much to ask?

That feeling of total and utter relief when I take a painkiller is amazing; all of the stress and pain just washes out of me.  Now I can get on with my work and lead a normal life.  Well kinda normal, I’m avoiding everyone in the office and walking around with my head down because I don’t want them to see my crazy eye, but apart from that it’s pretty normal.

I have conquered that roller coaster today, done the scary loop the loop and come out the other side.  Life is good!

p.s. pain meds should be taken as per your doctors instruction, be very careful that you follow those instructions properly.

Bipolar & Chronic Pain – Getting a Grip on it.

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For 6 months now I have had chronic eye pain.  It’s really starting to wear me down and affect my mood and my quality of life is suffering.  As each day goes on I can feel myself getting more depressed and a whole lot crankier.  I can’t see a light at the end of the tunnel, it’s going on and on with no end in sight.  Sometimes it is both eyes, sometimes just the left or the right, there is no pattern to it but it is always there nagging at me.

When you have normal moods it’s hard enough to deal with chronic pain day in and day out, so imagine how hard it is when you have mental health issues to deal with too.  It totally messes with your head.  As a person with bipolar and chronic pain I sometimes feel like I am losing the plot so I have been looking into ways to manage pain effectively to make life a little easier on myself and anyone else who may read this.

It’s not easy because the pain is there no matter what I do.  I can’t take endone (Oxycodone) permanently as my doctor will only prescribe them during a really severe flare up, so I ration them and use them only when I am feeling like I am not coping too well.

So what can I do to help myself to alleviate pain?

Painkillers

Take painkillers responsibly according to your doctor or pharmacists guidelines.  When you are in pain it is too easy to take more meds than the recommended dose in order to stop the pain.  Be mindful of how many you have taken and when the next dose is due.

Relax

Relaxation techniques can really help with pain relief by reducing muscle tension.  Sit in a quiet area and breathe deeply, keep your body relaxed and limp.  Play some soothing music or a relaxation CD or App that you can download from either the Apple store or the Google play store.  Don’t know how that will work with my eyes but relaxing has got to be good right.

Distraction

Any activity that occupies your attention can be used for distraction.  This can be anything, watching TV, reading a book or a craft activity.  Doing an activity that you enjoy can help to divert your mind from the pain.

Cold or Heat Packs

Depending on the type of pain and its location cold or heat packs can be used to alleviate pain.  I’m definitely going to try a heat pack across my eyes to try and soothe the area.  I reckon that would be wonderfully relaxing.

If you are in pain like I am, try some of these techniques, one of them may just work.  As I have a very low pain threshold due to fibromyalgia I personally I go for the pain killers first to take the edge off of it and then do the relaxation secondary to the meds.  That works better for me rather than just going straight to the relaxation as I find it really difficult to relax when I am in a lot of pain.

Still riding that roller coaster!

So Have I Got Fibromyalgia Or What?

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For years I have been obsessing about fibromyalgia, buying every book I can get my hands on, reading every website on the subject and diarising every symptom.  Recent events have put my diagnosis in doubt.

Fibromyalgia isn’t an inflamatory syndrome so how come since I started taking Methotrexate which is widely used for inflamatory diseases such as rhumatoid arthritis my pain has completely gone?   Seriously I have had no pain at all for probably 6 weeks now and that is unheard of.   I have had daily wide spread pain for years and now I am totally pain free (apart from my eyes but thats a whole different issue).

I spoke to my GP on Friday and mentioned that I am pain free and the first words out of her mouth was, perhaps you dont have fibromyalgia after all.  Now that is the question I will be asking my rhumatologist at my next appointment in a couple of weeks.

So what do I know?  The main thing is  I am HLA-B27 positive which makes me predisposed to getting  auto-immune diseases such as certain types of arthritis and scleritis, hence the chronic eye problems.

I have mixed feelings about maybe not having fibro.   Fibromyalgia is no fun but it doesn’t damage your joints like arthritis can.  Arthritis can be such a destructive disease which can totally cripple you.   On the other side of the coin it would be good to have a disease that is actually recognised and accepted by everyone.  Some people still see fibromyalgia as something the doctor tells you that you have when they can’t find anything else wrong with you.

I think my next step is a consultation with Dr Google to compare my symptoms with different types of arthritis and other inflamatory diseases.  I want to arm myself with as much information that I can before I see my rhumatologist.    I know a diagnosis doesn’t really matter, the important thing is I am pain free but for some reason I really need to know whats wrong with me.  I need a name, I need to own it and understand what is going on in this crazy body of mine.

Ok so lets pretend for a moment that i’m still in horrible chronic pain, these are my symptoms and other illnesses: –

* hip & groin pain
* thigh pain
* upper arm & shoulder pain
* chronic headaches
* fatigue
* bipolar
* hypertension
* empty sella syndrome
* HLA-B27 positive
* keratoconus
* scleritis
* chronic kidney disease
* sensitivity to changes in weather
* very low pain threshold
* bad sleep with not feeling rested upon waking

Reckon thats probably the bulk of it.  Any thoughts or ideas anyone?