The journey to Diagnosis
Apparently Lupus or Systemic Lupus Erythematous (SLE) to give it its real name, takes between 5-7 years to diagnose. I am only about three years down the line, so I may have a way to go yet. I haven't had the definitive nod yet, but most doctors I see think I have it, but my blood tests have not yet caught up which is quite a usual problem at the start.
I also had a heads up, as I had heard of the disease before. My mother was diagnosed with it in her mid 40s, and I have a scant memory of her going backwards and forwards to doctors with skin rashes, and joint pain. Unfortunately I did not have a good relationship with her at this time as she had a better relationship with alcohol. She has been on my mind recently a lot. Although I find it difficult to comprehend why she had an addiction to drink, my current health deterioration has given me a good insight into how she felt. In addition twenty years ago Lupus was more or less a death sentence. You didn't have long, usually 3-5 years, before it would get you. Medication and drug treatments have come a long way since then. So I have been thinking that alcohol may have been her way of coping, her way of shutting away the world and the pain. We never talked about the disease. I never knew what it did. I never knew how it worked. Back then I walked away to protect my own children from her alcoholism. I just knew she had Lupus and she took steroids. When the words Lupus started being thrown around 18 months ago now, I phoned my brother to check that was what she had. I didn't know it was genetic. Now I do. She has been gone nearly twenty years now, but I do think of her a lot.
So here I am in her shoes now. One thing I won't do is turn to drink, though my relationship with painkillers has changed somewhat recently. Never one to take the slightest tablet for anything, and to be honest I have had a clean bill of health for nearly my whole life, I now discuss with myself daily how many I should take, and which ones. I still shy away and generally only concede over night as I need sleep, but I do take Paracetamol and Codydramol quite regularly now. NSAIDS are a no no. Having had a few attacks of my gastroesophageal reflux disease, I am far too scared to take an anti inflammatory, which is ironic as inflammation is my biggest enemy.
So what is Lupus? It is a systemic inflammatory disease, where your antibodies go wild, have a massive war against everything in your body, and instead of killing the invaders, everything goes under friendly fire. Depending on what region the war is taking place, it starts going wrong. Liver, kidneys, brain, skin, eyes, mouth, wherever it feels like really.
Lupus is also called the great imitator, as it takes on the guise of lots of other illnesses, and then it also likes to bring them along to the party also. So you don't usually have it on its own, you have many problems, all in one bag....or body!
For my part currently I have Sjogrens syndrome.......what is THAT? Sjogrens attacks the glands in the body. For me it has attacked my eyes, mouth and digestive tract the most. My eyes have no oil secretion which means that any water evaporates as soon as it hits the eye. I have to put in special eye drops up to 20 times a day to keep my eyes working. Then at night time I have a thick gloopy ointment to put in, as they need to be moisturised over night. If I don't, my eyelids stick and can't open without scratching my cornea. If that happens I will get ulcers and lose my sight. So I have a very good relationship with my eye drops.....if you see me with them, you will now understand why. If I forget them and have a panic.....you will understand why. If I don't have them, the eyes start burning, my eyesight starts blurring and then I have severe pain as the eyelids start scratching the surface of the eyeball. I don't forget my drops 😊
Ah the mouth. Well that was a nightmare. My salivary glands are attacked, so I have reduced saliva. Think about eating dry cream crackers....one after another. Everything sticks in the mouth and swallowing is horrid....well you can't. You just choke. I am lucky. My glands still work, and I use xylitol to stimulate the saliva. This works well. Xylitol is in chewing gum, but I have some fabulous tablets called Xylimelts which stick to your gum and do a slow release over several hours. Wonderful at night. I used to wake every single hour, with my lips or tongue stuck in strange places where the mouth had dried up. Now I get a good six hours before I need water. Then you have synthetic saliva. The first time I sprayed this in my mouth it was heaven after being dry for so long. I got my daughter to try it as I thought it was so good.....she nearly threw up! She just didn't see it in the same light obviously.
Then my poor little digestive tract. I haven't had this all investigated yet as apparently the doctors think I am dealing with enough. Because of the saliva or lack of it, it upsets the balance of acidity in the stomach, so I have the reflux issues. I may have ulcers, but until I get scoped I won't know. That aside I take Omeprazole and that allows me to eat normally with caution from certain types of food. I can even have wine, which at one point was not possible at all.
The skin is also affected by my sjogrens. Just dry and needs moisturising. Nothing awful at the moment. I have the rashes, the urticaria, and the inflammation if the skin, not to mention all the problems with the sun and light, but that is a whole different issue which I will talk about another time.
The other friend I have is Reynauds Syndrome. Very common generally and not too serious, if you exclude gangrene and your fingers and toes falling off. I must admit in my twisted sense of humour, I enjoy playing with this. It is quite amusing to play with different colours in your hands. Especially smurf blue. I also managed to form ice crystals under the skin in my fingertips this winter. It was fascinating! I did however warm them up quickly when I noticed.
I also have neurological involvement. I have sensory peripheral neuropathy which means I can't really feel things in my fingers and toes. Mainly temperature is a problem. I can't feel heat, so could burn myself easily, and cold can be very painful as the nerves are exacerbated. I get shooting pains in all my nerves as part of the neuropathy, and it can affect organs and cause problems. It may be why I have varying heart rates, but who knows.....the doctors don't.....I am an enigma! The memory loss is a worry. That is still ongoing with investigation with the Neurology team.
Teams. Hospital teams. I am at so many hospitals and departments I don't know what day of the week it is. It is hopefully all coming together, and when I get up to the Lupus Clinic at Guys, I am hoping to have a holistic approach and not be so all over the place. Not long now.....
So what else....ah yes.....osteoarthritis. That one is attacking my hands and feet. Lupus likes hands and feet. The inflammation traps nerves, which can make it hard to walk. That aside I now have an iced bottle to hand in the freezer which manages this quite nicely.
I currently have over 20 different symptoms. All of which have appeared over the last 18 months. The fatigue is the most debilitating. Not tiredness like you have ever known.....and I used to do night shifts! That and the muscle or joint pain, which can completely immobilise me.
So, that is a start. Being a very open and expressive person, I wanted to share my experiences, good and bad. For those who know me, so they can have some level of understanding.....just in case I am snappy or quiet.....although I do try to be a ray of sunshine most of the time. For those who may be suffering with a chronic illness too. However lastly, to raise the profile of this terrible life changing disease. One person said to me....at least you don't have cancer. No I don't. They are right. Cancer in itself has many different forms, some deadly, some not. That showed the ignorance of that person, and their thoughtless words. It washed over me, but others would hurt from such careless words. Until someone lives with a chronic illness, life threatening or otherwise, they have no idea how that person may be trying to deal with it, or how it may impact on their life. Be kind. Always.
I hope to post a lot of positives.....because that is how I roll. How to cope when things get hard, even if that means going to bed and pulling the duvet over your head. How to keep smiling and making the most of life, as there is always something there to smile at, and how to get through each day one step at a time.
I also had a heads up, as I had heard of the disease before. My mother was diagnosed with it in her mid 40s, and I have a scant memory of her going backwards and forwards to doctors with skin rashes, and joint pain. Unfortunately I did not have a good relationship with her at this time as she had a better relationship with alcohol. She has been on my mind recently a lot. Although I find it difficult to comprehend why she had an addiction to drink, my current health deterioration has given me a good insight into how she felt. In addition twenty years ago Lupus was more or less a death sentence. You didn't have long, usually 3-5 years, before it would get you. Medication and drug treatments have come a long way since then. So I have been thinking that alcohol may have been her way of coping, her way of shutting away the world and the pain. We never talked about the disease. I never knew what it did. I never knew how it worked. Back then I walked away to protect my own children from her alcoholism. I just knew she had Lupus and she took steroids. When the words Lupus started being thrown around 18 months ago now, I phoned my brother to check that was what she had. I didn't know it was genetic. Now I do. She has been gone nearly twenty years now, but I do think of her a lot.
So here I am in her shoes now. One thing I won't do is turn to drink, though my relationship with painkillers has changed somewhat recently. Never one to take the slightest tablet for anything, and to be honest I have had a clean bill of health for nearly my whole life, I now discuss with myself daily how many I should take, and which ones. I still shy away and generally only concede over night as I need sleep, but I do take Paracetamol and Codydramol quite regularly now. NSAIDS are a no no. Having had a few attacks of my gastroesophageal reflux disease, I am far too scared to take an anti inflammatory, which is ironic as inflammation is my biggest enemy.
So what is Lupus? It is a systemic inflammatory disease, where your antibodies go wild, have a massive war against everything in your body, and instead of killing the invaders, everything goes under friendly fire. Depending on what region the war is taking place, it starts going wrong. Liver, kidneys, brain, skin, eyes, mouth, wherever it feels like really.
Lupus is also called the great imitator, as it takes on the guise of lots of other illnesses, and then it also likes to bring them along to the party also. So you don't usually have it on its own, you have many problems, all in one bag....or body!
For my part currently I have Sjogrens syndrome.......what is THAT? Sjogrens attacks the glands in the body. For me it has attacked my eyes, mouth and digestive tract the most. My eyes have no oil secretion which means that any water evaporates as soon as it hits the eye. I have to put in special eye drops up to 20 times a day to keep my eyes working. Then at night time I have a thick gloopy ointment to put in, as they need to be moisturised over night. If I don't, my eyelids stick and can't open without scratching my cornea. If that happens I will get ulcers and lose my sight. So I have a very good relationship with my eye drops.....if you see me with them, you will now understand why. If I forget them and have a panic.....you will understand why. If I don't have them, the eyes start burning, my eyesight starts blurring and then I have severe pain as the eyelids start scratching the surface of the eyeball. I don't forget my drops 😊
Ah the mouth. Well that was a nightmare. My salivary glands are attacked, so I have reduced saliva. Think about eating dry cream crackers....one after another. Everything sticks in the mouth and swallowing is horrid....well you can't. You just choke. I am lucky. My glands still work, and I use xylitol to stimulate the saliva. This works well. Xylitol is in chewing gum, but I have some fabulous tablets called Xylimelts which stick to your gum and do a slow release over several hours. Wonderful at night. I used to wake every single hour, with my lips or tongue stuck in strange places where the mouth had dried up. Now I get a good six hours before I need water. Then you have synthetic saliva. The first time I sprayed this in my mouth it was heaven after being dry for so long. I got my daughter to try it as I thought it was so good.....she nearly threw up! She just didn't see it in the same light obviously.
Then my poor little digestive tract. I haven't had this all investigated yet as apparently the doctors think I am dealing with enough. Because of the saliva or lack of it, it upsets the balance of acidity in the stomach, so I have the reflux issues. I may have ulcers, but until I get scoped I won't know. That aside I take Omeprazole and that allows me to eat normally with caution from certain types of food. I can even have wine, which at one point was not possible at all.
The skin is also affected by my sjogrens. Just dry and needs moisturising. Nothing awful at the moment. I have the rashes, the urticaria, and the inflammation if the skin, not to mention all the problems with the sun and light, but that is a whole different issue which I will talk about another time.
The other friend I have is Reynauds Syndrome. Very common generally and not too serious, if you exclude gangrene and your fingers and toes falling off. I must admit in my twisted sense of humour, I enjoy playing with this. It is quite amusing to play with different colours in your hands. Especially smurf blue. I also managed to form ice crystals under the skin in my fingertips this winter. It was fascinating! I did however warm them up quickly when I noticed.
I also have neurological involvement. I have sensory peripheral neuropathy which means I can't really feel things in my fingers and toes. Mainly temperature is a problem. I can't feel heat, so could burn myself easily, and cold can be very painful as the nerves are exacerbated. I get shooting pains in all my nerves as part of the neuropathy, and it can affect organs and cause problems. It may be why I have varying heart rates, but who knows.....the doctors don't.....I am an enigma! The memory loss is a worry. That is still ongoing with investigation with the Neurology team.
Teams. Hospital teams. I am at so many hospitals and departments I don't know what day of the week it is. It is hopefully all coming together, and when I get up to the Lupus Clinic at Guys, I am hoping to have a holistic approach and not be so all over the place. Not long now.....
So what else....ah yes.....osteoarthritis. That one is attacking my hands and feet. Lupus likes hands and feet. The inflammation traps nerves, which can make it hard to walk. That aside I now have an iced bottle to hand in the freezer which manages this quite nicely.
I currently have over 20 different symptoms. All of which have appeared over the last 18 months. The fatigue is the most debilitating. Not tiredness like you have ever known.....and I used to do night shifts! That and the muscle or joint pain, which can completely immobilise me.
So, that is a start. Being a very open and expressive person, I wanted to share my experiences, good and bad. For those who know me, so they can have some level of understanding.....just in case I am snappy or quiet.....although I do try to be a ray of sunshine most of the time. For those who may be suffering with a chronic illness too. However lastly, to raise the profile of this terrible life changing disease. One person said to me....at least you don't have cancer. No I don't. They are right. Cancer in itself has many different forms, some deadly, some not. That showed the ignorance of that person, and their thoughtless words. It washed over me, but others would hurt from such careless words. Until someone lives with a chronic illness, life threatening or otherwise, they have no idea how that person may be trying to deal with it, or how it may impact on their life. Be kind. Always.
I hope to post a lot of positives.....because that is how I roll. How to cope when things get hard, even if that means going to bed and pulling the duvet over your head. How to keep smiling and making the most of life, as there is always something there to smile at, and how to get through each day one step at a time.
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