Spændende interview med skuespillerinden Regina Hall fra bl.a. Scary Movie. Hendes mor har sklerodermi.
Please read this wonderful interview with Regina Hall, known from the movies Scary Movie and the tv-serie Ally McBeal. Her mother is diagnosed with scleroderma and she works hard to spread awareness of this rare disease. Thank you, Regina!
Picture from http://blog.abilitymagazine.com
Ok, so last Tuesday I went to the hospital for my colonoscopy examination.
The procedure is mentioned here. The doctor inserts a flexible tube all the way through your colon – every 150 centimeter (5-6 feet). And believe me – that is a lot of colon!!
It is said that there are no nerves in your digestive system – at least there is no nerves in the colon – so you will not be able to feel when they do a biopsy, or in my case several biopsies all the way through the colon.
But you can feel it when you get the tube inserted because the colon moves and gets in touch with rest of your stomach. For me it was quite painfull. My colon was NOT coorporating with neither the rest of my body OR the doctor.
I dont know why it was not coorporating but maybe because the colon was very slimm. But after some struggle the finish line was reached, and the examination could begin.
Simply by pulling the tube back and on the way take a look at the walls and grab a biopsy on the way. I think they might have taken 10-12 biopsies – to check out the entire colon. And that is great and shows me that if there is scleroderma in my colon the tests will show. I will know in a few weeks.
And at least I did not have polyp or ulceration or something like that.
This Tuesday I am going to the hospital for a new examination – one I have never tried before and one that I dont want to try. But to check up on my scleroderma and to find out what is happening and where it is happening I need to go through different tests. I dont think I have gone so much to the hospital in my life as I have the past 2 years.
This time I am having my colon examined, the big one in the picture above. Did you know how big it is? 150 cm or 5-6 feet!!! And they want to examine EVERY inch of it. Please knock me out! Well, it is not going to happen – the knock out thing – and I will survive this as I survived last years easophagus examination. But I know that I will not like lying there on the side going through the examination. I have no problem in finding things that are much more fun. But I actually asked for the examination my self because I was wondering why I did not get any – and now that the doctors have said that I have the systemic scleroderma everything should be examined at least once!
What is a colonoscopy?
Well, it makes the doctor take a good look inside your body using a flexible tube which he/she inserts via your anus. On it there is a camera and the doctor can watch the procedure on a tv. Or he looks through the instrument.
During this long journey inside your body the doctor can see in what shape the colon is. If needed a biopsy is taken. Polyps are being removed and so on.
You can read more here.
My fingers are starting to bother me, as mentioned here. Not much, but they dont work right, if you know what I mean. In the morning they are stiff for some time – for about 30 minutes or so – and then I can bend them into my hand as a “normal” person. Let’s not get into how my entire body feels like in the morning. 
As mentioned here I go to my physiotherapist twice a week using paraffin bath. This warms my fingers and my finger exercises are so much better than without the paraffin. And I really like it. It is also good for joint pain.
If it could only slow down the process I am happy. I need my fingers, as everyone else does.
Besides the stiffness my fingers hurt a bit in the joints, and they are very itchy. I guess this means that there is some kind of activity in them. My skin is soft and not hardened but my specialist says that this might mean that something might happen to my fingers. She cannot say for sure – but maybe. They are also very beginning to look wax-like, and this also means that something is happening. My thought is sclerodactyly, which is the condition when the fingers became tight, stretched, wax-like, and hardened.
You can see pictures of my fingers below. Do they look like sclerodactyly on its way? Is there anything I can do to stop the process besides what I already try to – with exercises? My next visit at the specialist is in October – I hope to get more answers there.
But I know that no matter what I will manage. If my fingers will curl more than this I know that I can learn how to live with it.
Ok, this is how it all started for me.
In winter 2004 or 2005 I started to suffer from Raynaud’s. I first didn’t know what happened to my fingers. When I went out shopping I could drop the shopping bag on the floor and there was no feeling in the fingers. My fingers were all white and then they turned black. I was very scared but my doctor had no doubt that this was Raynaud’s Phenomenon, so he prescribed adalat for me.
Then in summer 2007 I started to get white toes as well and the fingers turned white when holding on to cold things. I also experienced capillary changes in my nailfolds. So I went to the doctor again, and he sent me to a rheumatologist. She took a lot of blood tests – she knew instantly that this was an auto-immune disease, but we had to find out which one. In November 2007 I was diagnosed with scleroderma. She said: “It looks like you have scleroderma, but which one is still hard to tell, but we will monitor you well to see if any internal organs will be affected”.
Now, there is no doubt that my scleroderma is the systemic scleroderma. It is not that aggressive. Things aren’t happening from one day to another, though.
I get nexium to descrease the amount of acid fluid in my stomach because I have reflux now and then. Sometimes food isn’t busy to end up in my stomach but so far it doesn’t stop in my throat, it is just a bit slow.
The last 6 month changes have started in my fingers – they tend to get more and more stiff and at least one finger is a bit curly – I try to prevent it with paraphine baths twice a week along with exercise. My spine feels stiff, especially in the neck area – I have to “unlock” it several times a day.
And I also have pain in my jaw from time to time. My mouth won’t open up as much as it used to.
I can feel that my entire body is becoming slower and slower – I don’t run the stairs as I used to.
My skin in face and on fingers is very itchy – my fingers look like wax and my dermatologist say, that the itchy could indicate change in the skin, but so far my skin is soft. I am a bit worried, but what is there to do than just wait and see?
I might have some digestive problems – haven’t been examined there yet. But it will happen soon.
And then there is this huge fatigue – I am so tired from time to time. Sometimes it is lasting a few hours, but right now I am in a fase with several days. Maybe I am too busy at work, mayby my body is telling me that an attack somewhere is present. I don’t know – I guess I will just have to wait and see, and try to relax in the meantime.
The journey from 2007 when I got my diagnosis to now have been like a roller-coaster. My emotions have been up and down. At first I was very shocked and very scared and of course very depressed. Why me? And Oh my God, I am going to die within 14 days.
Scleroderma IS a She-Devil. No doubt about that. But I am the kind of person who cannot sit down and say: Ok, that’s it. I want to know my enemy – I want to know what and when and how to react, when things happen, IF they happen.
And because I am a librarian I have access to different kinds of databases, and I know how to use my tools. I also know how to search for information on the internet. And maybe because I am a librarian I know how to sort out the information on the Internet. Yes, there are horrible stories out there – but I have learned that it is a good thing to look at all the information and only use the information that is right for YOU. Because scleroderma is a disease with many different faces, some things in the information are not right for you, but maybe they are for the next person who reads it.
Another thing I have learned about this disease is that I am always waiting. Having the diffuse kind of scleroderma means that we will have to wait and see what is going to happen. Yes, things are worse in the beginning – the first 2-3 years. But there is no guarantee that this is the case for us all? I’ll just have to wait and see, haven’t I?
Som de fleste ved, så er sklerodermi ikke en entydig sygdom. Der findes en masse varianter af den og under den store sklerodermi-paraply findes en del bi-diagnoser eller andre autoimmune sygdomme, eller sygdomme i det hele taget.
En af den er Sjøgrens Syndrom. Den viser sig især ved tørhed i øjne og mund, men andre dele af kroppen kan også angribes.
Pga tørhed i øjne og mund er jeg blevet testet for sygdommen, men ud over at højre øje var lettere tørt i forhold til normalen, så går jeg ram forbi.
Dog har jeg lavet noget ressearch, og jeg faldt tilfældigt over en rigtig god blog, hvor en dame fra USA fortæller om hvordan det er at leve med Sjøgrens. Jeg synes den er rigtig god, idet hun kommer omkring en masse ting omkring hendes hverdag med sygdommen, hvad hun gør og bruger og tager, fakta om sygdommen, og ikke mindst en masse gode links og litteraturhenvisninger.
Siden er på engelsk og hedder Reasonably Well. En dejlig titel, der gemmer på en livsglad kvinde, der ikke bare sådan lader sig kue af at have en autoimmun sygdom.
English: Scleroderma comes with a lot of different diagnosis. One is Sjogren’s Syndrome, another auto-immune disease, which causes dry mouth and eyes, joint pains and others. Look at this wonderful blog called Reasonably Well. It’s about a very joyfull lady who does not let an autoimmune disease slow her down.
Der er ingen tvivl om, at Internettet er medvirkende til at sprede kendskabet til Sklerodermi. Der findes masser af websider, hvis du søger på Google og afgrænser til sider på dansk, får du i underkanten af 2000 sider, og omkring 1 mio websider, hvis du søger med den engelske term.
På YouTube, som er en side, der viser masser af forskelligartet videoklip har jeg just lavet en søgning, som bl.a. viste denne lille dokumentar / interview af en ung pige på godt og vel 17, der fortæller om sin erfaring. Måden hun beretter på er meget informativ -- ikke desto mindre kan man sagtens se, hvor meget sygdommen berører hende, når hun fortæller om at hun i weekenden får indsprøjtninger som mere eller mindre holder hende hjemme, fordi hun bliver ekstremt dårlig af behandlingen.
There is no doubt that the Internet helps spreading the message of scleroderma. Searching the internet on eg. Google gives you a lot of hits.
English: On YouTube you can find lot of different video clips. Besides music videos and movie trailers you also find useful information on scleroderma. Try make a search and watch clips for tv. Walks in the US. You will also find this video clip of a young girl who talks about living with scleroderma since she was a little girl. All though the clip is very informative you also feels what an impact scleroderma has on her, when she talks about getting an injection in the weekends and how bad she feels afterwords.
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