I swear I’m not trying to hornswoggle you!! Read on and you’ll see.
Despite not being on duty (call it the bliss of shift work in the halcyon days of the chilly season), today I have spent the day in my hibernaculum. Lately I’ve resorted to this a couple of other times especially when I’m in a hiemal mood or like today, woke up tired. For those raising an eyebrow, yes, waking up tired after a good night’s rest is possible with SLE. So I decided to stay home, light a fire, take it easy, eat healthy and slowly, read, keep warm, and enjoy my family. A siesta was in order….but only thoughts came.
I usually treat thoughts when I’m in bed to the ‘Slave New World‘ therapy which goes like this:
I face them as The enemy
I stare Inside me
I control them
Then I destroy ‘em all
But not today. Today’s thought drifted in the way of the teacher, Lupus the teacher. Systemic Lupus is often referred to as the ‘great imitator’ for it mimics a lot of other diseases and conditions. It’s because of this that diagnosis if often delayed. But nobody reads about Lupus as the great teacher.
Over the years, through the smog SLE has created around me, I have managed to thrive, not on my own, but managed, just like The Beatles say. Some symptoms have been there all along whilst others have made their grand entry during the last 4-5 years. The late comers ware the most mischievous – Mr. Reynaud; Bitchy little Miss Brain Fog; Lady Lethargy, and the Devil’s children, those aching joints!
Unlike other Lupies, my bouts of lethargy are not a constant in my life. So I do almost everything I can/want to do on most days. I have learnt to go around it. If I’m at work I try (the magic word is try) to take shorter but more frequent sitting breaks. During days like today I learnt to take it easy and, most importantly, not to feel guilty for doing so.
Reynaud’s attacks are often anticipated and at times countermeasured in time. I know that when I put my cold gloves on, they shock my circulation. When I go out in the cold, that makes it worse, so I either take them to bed with me and put them on before I get out of bed or warm them well with an instant heat pack before I go out. See, I’m a good student!
The pains in the small joints from my wrists down to the fingers are a constant, present for most days of the year for the past 3-4 years or so. I learnt to ignore them and go on with my life. I learnt to ignore when the teacher thew the challenge at me. This is how Lupus is a teacher. I throws the challenge at the student and it is then up to the student to pick it up and learn how to go about it…..or just wither away in silence, alone.
Oh, nearly forgot about Brain fog…………….It’s a loathsome bitch and will be forever!
There are various problems encountered by Lupies. Some of which are:
- Oral sores – usually painless
- Corticosteroids may be used to control SLE flares. Their side effects include dryness of the mouth, swelling of the gums, oral sores, yeast infections and bone loss (which eventually affects the movement of the jaw).
What to do?
- Get a note from the rheumatologist addressed to your dentist explaining your problems. Even better, get them to meet or call eachother.
- Do tell your dentist that you have SLE and about any oral sores you had in the past or have now.
- Every time you visit your dentist, take a list of all medications and any supplements you are taking including any allergies, drugs which made you sick in the past, or others which your Rheumatologist has cautioned you against. These can affect the way cleanings are made or drugs which need to be prescribed.
- Keep your mouth healthy, visit the dentist regularly – every 3-6 months.
- As we said, some meds can dry up your mouth. This dryness may be uncomfortable, it increases the risk of cavities, causes damage to the gums and then, if present, dentures fall off. Thus you need to keep your mouth wet. Here’s how…
- Drink 1.5lt-2lts daily unless contraindicated by other conditions
- Spray water topped with a little amount of mouth wash solution into your mouth frequently.
- Avoid salts, tobacco, alcohol, and caffeine.
- Wash your teeth properly once or twice a day
….if you’re a Lupie!
First things first. I’m not painted myself but I really like tats. Their history goes way back to the 18th century and since then, it has evolved with regards to techniques, materials, and safety. So your question now is, why the bloody hell shouldn’t a Lupie get a tat?
Unless one is affected by cutaneous Lupus, there is no reason why a tat would make any damage. Also, many tattooists take pride in offering a safe service with sterilized equipment: FACT! But, can anyone ever be a 100% sure that the items were sterilized properly and/or stored well and that it’s 100% safe? FORGET IT!
To keep this short, the diseases which can be contracted with tattooing are Hepatitis B and C, HIV, infections with common bacteria such as Staphylococcus Aureus and Endocarditis. Dr. Thomas (2104) holds that these infections can be deadly especially if someone is on immunosuppressants – drugs commonly used to ‘combat’ Lupus flares.
These diseases greatly limit the physician’s ability to prescribe medications to control SLE especially during flare ups.
So, that’s my 2 cents on it. Just in case you’re still adamant that you want to ink yourself, he’re some Lupus tats for you.
I haven’t posted in some time now. I was coping with family life, study and being really busy at work in a place which is insensitive to the needs of a person with Lupus (nothing new really). This has been draining my energy levels, which, sincerily speaking, are quite ok compared to those of others I know. I have also been doing some shooting for a couple of times when I was ok.
Today is my 5th wedding anniversary. I love my family (wife and son) and thank God for them every single day. My wife has been so supporting through the downs which SLE put me through during the last 4 years (Deep Vein Thrombosis, Pleurisy, and Pericarditis, and the daily pains and groans at night) until I was diagnosed last December. My son helps me forget (yes, forget!) the pain which the meds often do not take away. I hate Lupus with all my fucking heart, I miss me and long for the old me to be back every single day BUT I love them to bits and they make pulling through so worthwhile, I love life. They give me purpose in life and that is something I wish onto all fellow sufferers, purpose. Whatever it is, purpose is strength to fight the Wolf every single day.
So, I log in today to post something for the few followers that this blog has gathered along the few months it has been on and what do I find? OH my dear God…..over 5200 views! That’s nearly 4K more than what I had left off 2 months ago!!! Woooohoooooo.
I just want you ALL to know that you made my day and that
So, October (and May!) is Lupus Awareness month and so I decided to put on some of this stuff here:
If you don’t know Lupus, then you could read through this. It’ll take less than 5 and give you quite some insight into the disease. If you don’t feel like reading, just watch the Youtube clip below. No excuse now, HA!
And please, for the sake of those who fight the wolf every day, try to raise awareness. Here’s how to in simple, inexpensive ways.