Saturday, August 25, 2012

Sarcoidosis, my story!

This isn't a feel sorry for me blog.  Far from it.  I have quite a few friends living with cancer, and every day I thank my lucky stars for being as healthy as I am. A couple of weeks ago however I had a few of the old symptoms back, so I thought I would post a blog about it.  It is one of those blooming auto immune diseases that just comes and goes, for some years. 

My story begins around the beginning of 2005.  I was working hard, and self employed, but I was loving life and my work too, as a dance teacher. I was aware that was was feeling extremely tired, and just not feeling great, and well, pretty low.  I hate to use the "D" word but I guess I was a little.  Ok I must use it, I was depressed, but I thought I was just working hard.  My daughter Frankie was just about to turn 18 and we had booked to take her Paris on the Eurostar as a surprise trip, and to see one of her friends dance at the fabulously famous, Paris Lido. A few days before the trip I had a bit of a sore throat, no razor blades or anything over the top, and then my voice went completely.  I vaguely remember having a lovely time in Paris, although I still could not talk at all, and not an ounce of energy, and I remember feeling pretty emotional for a lot of the time too.  I had no voice what so ever for about three weeks in total.  That's tough when you are a dance teacher!  As well as that, I started to feel, well just pretty poorly really.  I couldn't put my finger on what was wrong, I just feel exhausted, and felt rather nauseous all the time.

I remember phoning my doctor numerous times, and pouring out to him how awful I was feeling.  He kept telling me it was probably viral, and I needed to be patient.  I would come off the phone crying, feeling I was wasting his time. Most days my dance classes would take me to several places in one day.  On a Monday, for example I would teach my lovely "young at heart" ladies line dancing.  I then had three quarters an hour to get across Brighton to a fab and busy after school dance club.  This would give me time to drink a lucozade and have a small bar of chocolate, on route, and  more often than not a couple of pills, plus a quick cry.  A quick touch up of the make up, put on my dance teacher's face and off I would go again.  I would finish that class, then travel across town to my next.  No more pills, but probably time for a cry, simply out of sheer exhaustion, for what seemed to me to be for no real reason.

Alan and I decided at the beginning of November to have a shopping trip to Bluewater shopping centre and think about Christmas prezzies.  We bought nothing apart from lunch, and on the way home, I turned into a completely miserable cow, and had a feeling of complete and utter gloom and depression that I had never felt before.  I also had a strange itchiness in my eyes.  I wanted to claw at my eyes, my lashes and even my eyebrows too.  That was certainly the beginning of a significant symptom.  I am rather an emotional person, and at certain times of the month can easily cry over the Andrex puppy advert, and I never watch a sad film as I will always cry, and I don't like crying! Life can be tough enough without giving ourselves a reason to cry.  Give me a good comedy, and a great chuckle any day!  My eyes as well as being extremely itchy became very dry.  My tear ducts dried up and although things would make me cry, I shed no tears for a few months.  That's a bit weird!

We also had a holiday of a life time booked in Florida too, with my son, and daughter and their partners.  Alan and I were working hard.  Life was treating us well and we wanted to treat them.  I did have a lovely time, I really did, however after our evening meal, they would go back to the hotel room with me and settle me into bed and they would go back out again.  My eyes were still causing me a lot of problems and were totally mishapen and I didn't look like me! I remember visiting Sea World and feeling very ill that day, and I so love it there.  The journey home from Florida was terrible for me, luckily the rest of the family all slept, whilst the plane bounced about and I felt so terribly sick.  I couldn't wait to get home!

Eventually I did make an appointment to see my doctor, who I liked and I had no issue with, however I did want to hit him with a heavy blunt object when he suggested blood testing me for the menopause.  Not that I couldn't have been going through it but I was suffering from real physical symptoms, which I rather felt he was dismissing. I felt he was taking the easy route!  He did the blood tests he felt he wanted to do, and every thing came back.... surprise surprise, normal!

I soldiered on with all my classes, still crying on route and falling asleep on the sofa usually withing five minutes of getting home.  I don't remember cooking, cleaning or looking after the family in any way.  I guess I didn't. Luckily they were all quite capable of looking after themselves, and all I did was go to work. My line dance ladies were all very perceptive and knew something was wrong, so I did confide in a small handful of people.  Somehow I managed to teach right up until Christmas, plus run a great school dance competition, especially to raise money for a very special little boy, who is sadly now in heaven.  I believe adrenaline carries you through and sometimes when you relax, a health problem can rear it's ugly heads even more.

I broke up for the Christmas break and we had been invited to our neighbours for a drink to see in the new year.  We had wonderful neighbours, all great friends.  As I was getting ready in the bathroom, I noticed a rather large lump on the side of my face, like half a boiled egg had been stuck on my face?????? I did panic a little, and no we didn't go to the party.  The following morning I had one the other side, too.  I had mumps as a child but this was different it was in front of my ears, and I looked like I was storing food like a hampster! We went to the emergency doctor, that had obviously drawn the short straw by being on call on new years day.  He promptly told me it was an allergic reaction.  I had in fact been taking antihistamene pills for about 3 months to try and help my eyes, to no avail.  I really was desperate for help, and no-one seemed to be able to help me.

It was time to make another appointment with my doctor, this time Alan came too.  He had been living with me feeling so very poorly for about a year.  He knew it wasn't me, and he had been so patient and caring, but we needed to get to the bottom of it now, it was hard for him too.  As soon as the doctor took one look at my swollen face he knew it was time to take this a bit more serously. We talked about how my health had affected me the past year, and then I cried, as usual, so Alan took over.  The doctor repeated the blood tests and told me to make an appointment for the following week.  At last!

Alan and I went back the following week, we were both pretty sure the blood tests would come back all clear, and I would be at square one again.  Not this time.  The doctor said my thyroid count was "all over the place" not low or high it simply was not working properly. This of course was causing the extreme tiredness and the depression.  The results on my liver didn't seem to be correct either,  which was causing me to feel very sick all the time.  He made arrangements for me to see the top thyroid consultant at the Brighton hospital. New blood tests were done, eventually of course, and a follow up appointment was made.  I was so sure that during the appointment I would be told I had an under active thryroid, and I could take a pill every day, and my life would be back to normal in no time.  However it wasn't quite as easy as that. This lovely lady said I had thyroiditis, and that my thyroid simply wasn't working as it should.  She could not give me anything for it as she felt it was a symptom of another problem going on.  I was devastated and cried like a baby.  I had been feeling so ill over over a year, and nobody seemed to be able to help me.  The consultant told me she understood completely how I was feeling, and said she wanted to discuss my case with some of her colleagues and she made a note of my email address.  I was so very grateful.  She cared!  Sure enough about a fortnight later she did email me as promised.  She had been discussing my case and felt I could have something called sjogren's syndrome pronounced shoh-grinz, and it is not to be confused with a piece of Ikea furniture!  

The symptoms were uncannily familiar!  I was sent off, to a rheumatologistIf you would like to know more about sjogren's syndrome it, copy and paste the link below.'s_syndrome

A few weeks later, and I saw the consultant rheumatologist, a very nice attentive gentleman, who seemed pretty convinced at first I had "Ikea syndrome."  He asked lots of questions, and he seemed to be putting a puzzle together.  It seemed to be coming together and then he stopped quite abruptly and said "Do you get breathless Lorna?"  "Errr yes" I said, but I had put that down to not feeling well, and trying very hard to still dance whilst I was teaching.  Although sometimes I would simply get into bed, and I would feel so out of breath it would be as though I had run a race.  He immediately said, I don't think this is Sjögren's.  My heart missed a beat.  Was I going to be sent home again with no idea of what is wrong?  Luckily he followed it up straight away with "I think you may have sacrcoidosis". A cat scan would check this for sure!"

Of course more time went by as I waited for the scan, still dancing, still crying, still struggling and feeling generally ill. My head and face ached, as did my teeth and ears, and my skin itched as though there was something creepy crawly under it. The scan was done and another consultant seen.  This time at the lung department, with some other tests too.  The appointment following up the scan and tests was extremely simple.  "Yes Lorna you have some nodules on your lungs, which are symptoms of Sarcoidosis, and they are not cancerous in any way."  I was so reliveved, first of all of cause that the nodules were not cancerous, plus also a huge relifef that they really did know what was wrong.  

The doctor explained to me that the cause of sarcoidosis is unknown. The disease can appear suddenly and disappear. Or it can develop gradually and go on to produce symptoms that come and go, sometimes for a lifetime. Sadly currently, there's no cure for sarcoidosis. However, for the majority of those with the disorder - around eight out of every ten people, in fact - the condition resolves spontaneously after a few years and never comes back.  More than two-thirds of people with lung sarcoidosis have no symptoms after 9 years. About 50% have relapses.  That is what you are told!

Sadly I seem to be one of the 50% that suffer relapases, this is usually in the form of extremely painful parotid glands.  Usually now I don't have the swelling, just the pain, and occasionally a touch of the depression will set in.

During the time I was undergoing tests and seeing different consultants, I was at one point given steroids which reduced the swelling in my face, however this did not last and the swelling came back.  It is now so much easier for me to handle.  For a start I am not having to dance and paint on that smile while I'm feeling ill, and if I'm feeling depressed which I feel rediculously bad about, as I have absolutely no reason to be feeling like that, what so ever, I guess it is a chemical imbalance, and I try and hide it.  When you are living with someone 24/7 of course that is not easy and I become extremely introvert, which is so not me.  That can last weeks or even a few months, but as hard as that is, I know I will come out the other side.  

Up until about a month ago I had suffered no effects from it for almost two years and then the pain started in my face. It's ok, I know it will only last a few weeks at the most. I am one of the lucky ones!  I thank my lucky stars for that every day!

If you would like to read up about sarcoidosis, copy the  link below.

Keep healthy everyone!


Yolanda Solo said...

I know you are not looking for sympathy, but good God woman, what a terrible time you had! And the frustration of not being taken seriously must have been emotionally exhausting. But you are obviously a fighter and top marks for sharing your story - it might someone else who thinks they are going crazy, when in fact, they have not been diagnosed properly.

redacteur Frans said...


Sarcoidosis sucks !!

Lorna Penfold said...

Thanks Yolanda. Having a few very minor problems a few weeks ago did think maybe someone else out there can relate to my story, and hopefully it will help them. There is a light at the end of the tunnel:-) Thank you

oak haven alpacas said...

I so know what you mean. I have Lupus and sjogren's syndrome too. I so know what those flare up symptoms are like and how terrifying it feels, even if you know it likely will be short lived. :(

Thanks for sharing your story. The more who share, the more we can help others who may be suffering in silence.


Lorna Penfold said...

I am sorry to hear you have both Lupus PLUS sjogren's, Cara, how awful. I hope you relapses are very few and far between! Thank you for your kind words :-)