Ling

I have been studding for years and with all these healthy problems it can be very challenging. Lets address the physical needs first. 1. Eat right, take your medication, exercise and sleep enough. I never study past 8 the night before the exam. I am always fresh and ready for the exam the next day. I recon what you don’t know by 8 the night before you will never know. And don’t stress, do your best and you will past. If you don’t work hard you will fail and in all due respect you will know in your heart that you have not worked hard enough. I am studying to be a Horticulturist and some of my subjects are very interesting and difficult. I never let any subject intimidate me. I have recently passed an exam that was suppose to be the most difficult subject in the course. I breezed through it. I refused to let tracker engines and pumps get me down. The most important thing is the area in which you study. There must be nothing that distracts you. Always read the course material before you start studying. It makes the world of difference if you have a feel for the subject instead of just jumping into it and only studding sections. My study method comprises of 1. Reading 2. Underlying 3. Removing key words 4. Connecting different important words together. 5. Read again and repeat Key words until you feel you have absorbed the relevant information sufficiently. 5. I also often use colours and draw pictures. Eg. When I am studding about pollution, I draw all the different sources and you remember the pictures in the exam. You will get faster at the method the more you use it. Good luck, but most of all believe in yourself. You can do anything in this world if you put your mind to it.

Dear bethany08xu Food is not as simple as you think. You have to clearly understand the concentration of the sugar levels as well as the fat levels. Certain food become sugar when you eat them. Go and see a dietician who is trained to determine if it is your food. Trust me you will die once you know what they put in our foods. The healthy foods are not as healthy as everyone thinks they are and often have high Fat levels. Please get help it will be worth it. I have an amazing dietician who has been part of my life for years. As my physical conditions change she is right by my side monitoring my diet according to the new changes. I changed my diet and have not had migraines every since. It is not easy to change your eating patterns so drastically, but it is WORTH IT!

Dear JacobyD I am going to go home tonight and bring my bottle of medication for you. I will e-mail you the active ingredients. I use to suffer from the throat problem and the tablets use to work great. Who knows maybe it can help you to. I remember how scary it was!

I truly just love this forum. I feel perfectly normal when I read all our stories and complications. I hate mornings with all my heart. I can’t get out of that bed at all. I feel as if my body goes to one **** of a party every night and I am left with the hang over for most of the day. I wish it were the other way round. I do most of the important things in the morning. I have to drive myself to work nearly 30 km and then work for 8 hours. One of you mentioned you could drink coffee. Well I have never understood it but if I want to sleep I must drink a cup of coffee. It drops my sugar levels very low and makes you feel terrible. The only thing that I can think of that helps me in the mornings is my beautiful black dog. I have mentioned before she does not understand that mommy is sick and boy does she know what my alarm is for. Good luck, it takes guts to get out of the bed every morning.

I experience something similar to what I understand you are getting. It is a sudden sensation that something is holding you very tight around your chest. It hurts with every breath you take in and out. It feels like you need to take shallow breaths so that you don’t feel the pain. I have had this a few times only and it normally last a day or two and then moves over for another symptom to make my life ****. I recently experienced a very bad chest pain on the right side that made me think I was dying. Luckily I remember reading on our discussion forum that when you lie down and it feels better then it is not a heart attack. The pain endured for at least a hour and was very painful afterwards as well. I went for a local anaesthetic into the painful area (chest) and experienced instant relief. Maybe when you have such bad pains you can try this injection. I wont lie to you it hurts, but probably as much as the aterax injections. Good luck, I know there is another name for this we are getting. It is another sort of syndrome.

Dear Poslisa My heart bleeds for you and I hope that you make the right decision. I experience the same as everyone else. My little heart use to beat so fast I was convinced it wanted to climb out of my chest. Physical activities make this worst, even something simple like climb stairs. I am on a beta-blocker as well, and my heart is much slower. But I do notice when it increase but nothing compared to life with out my tablets. I get tired easer on the beta-blocker and making my bed in the mornings exhausts me. I must also mention I once went 2 days with out my tablets and ended up at the doctor. Please take your tablets. I am very sensitive to food but something I have noticed that my heart does not enjoy is fruit juice. I cannot drink 100 % pure fruit juice. I drink it diluted like a baby would and then my heart does not react. I experience excruciating chest cramps more frequently since I am on the beta-blocker. But I also have a heart valve that is too big (Barlow's syndrome) Go for as many opinions as you personally need. I ALWAYS SAY WHEN IN DOUBT GO WITH OUT!!!!!!!!! I have been to doctors that "B S" you so and all they can think about is your money and one doctor had me on such high medication, my cardio was convinced he was trying to kill me with the dosages. Good luck and be brave.

I have mentioned before that I have gained allot of weight from the Florinef. I have been off it for about 2 months now and I am still experiencing side effects and growing by the day. Out of desperation I have gone for lymph drainage to try and get my figure back. I would not recommend it to anyone with our problem. It makes you so thirsty you feel like a fish out of water. It is very painful! After a session I feel like death warmed up, it drains all my energy. I have lost hardly anything in comparesing to a normal women. The next day your body is so sore you cant even touch yourself. It feels like you have run the comrades. Please be careful before any of you go for this. I have stored all my toxins in my body and the lymph drainage just brings them all flowing through my body again. And by the way we are not aloud any funny oils during massaging. How does one live with all these problems. I feel like a old women trapped in a young women’s body. I always joke that I am going to be the healthy one in my old age. Due to me getting all these problems so young.

Every year I have depleted my funds of the medical aid. As my health has been getting worst and worst over the years, I have been shopping for a good medical aid. My husband and I believed that this year we had chosen the best possible medical aid on the market. Until I was admitted to hospital for nearly 3 days. They did not pay a cent. Reason disease unknown and to rear. Pots. My diseases are seen as micky mouse diseases and will not be covered. I spend nearly 2000 a month on medication and cant get chronic medication. The stupid medical aids don’t know anything about our problems. My life is **** and they say O its nothing. If we had something common like Diabetics or Cancer, No problem. I tell you I wish that the person who rejects my payments and medication applications get all my problems. Then we will see how they live with it.

Driving is a challenge for me in my life. I refuse to give up driving as I will be throwing away my independence. And besides that I am not quitting even with all 3 Disease making my life ****. I pass out allot and cant always fight it. I have a lot of attacks and often get them behind the wheel. I will let you in on my story of success. I drive a minimum of 55 km a day to work and back. Once I place myself behind the wheel in the morning I pray. I ask the Lord to send one of his fantastic angel drives to drive me to work safely. I drive knowing that I am not alone. When I feel a attack coming on I just pray hard and give it over to the Lord. Praying is the most powerful thing in the world. I must however add that it takes allot out of me and I have to concentrate so hard just to get to work. The worst part is the morning hangovers and wanting to sleep behind the wheel. I have gone for spiritual healing and have not been cured yet. And I have barely made it to work before and ended up passing out and having a full-blown attack. But this is what the Lord has given me and I don’t know why. All I can do is live with it and pray all the way to work and back.

As a child I had allot of headaches. As I became a teenager they got more and worst. From about 16 I started getting the worst migraines and by 18 and up was getting a few migraines a week. My headaches were one of the first signs for me that something was very wrong. But as I have mentioned before my gp just gave me more and more medication. After years of tablet misusing I went and got a second opinion. I have had tons of blood tests in my life. And many other tests as well. The worst test I have ever done was the glucose intolerance test. Once you leave sugar, sugar eventually doesn't taste as nice as before. I had to drink icing sugar with a few drops of water in. In nearly died it was so disgusting. For more than 5 hours my sugar levels just dropped and dropped, they eventually sent me home due to them closing for the day. It was then confirmed that I am reactive hypoglaceamic. Since I have excluded all sugar in my diet I don’t get Migraines anymore. I have a fantastic dietician who has been working with me for years. If you are interested in studding to be a dietician and need some personal health guidelines I can send you her e-mail address. She is the only "medical" person that has stayed part of my life over the years. The rest of them have got the boot long ago.

I would say I drink more than 3 litters of water a day easily. I am like a alcoholic with water. I cannot get enough water. Due to me having pots and the sugar problem some days my mouth is so dry I just drink and drink and drink. I have also noticed I feel worst if I don’t drink waters. Some nights I wake up to go and drink water. The first thing I do in the morning is drink water and I easily drink a litre of water before I even get to work. I can remember being thirsty my whole life and for me there is nothing as nice as water. So I just drink and drink and drink. I just love water. I can’t drink any gassy cool drink and I can't drink anything with sugar in and I can’t stand the smell of milk. So I only drink water and Rooibos tea.(caffeine free tea) Caffeine increase the insulin production, which lowers your sugar levels and blood pressure in return.

I only have bad days and worst days. Once in a blue moon I have good days. I am learning to accept bad days as normal in my life. For me what has helped allot is my blood pressure tablets. I can't take Florinef like you guys or the vascular... tablets due to my heart problem. I also take fructose tablets, which is a slow release in my body. I take this for my sugar problem. I am totally drunk today and all I can do to help it is take all my tablets, eat and stay out of the sun. The sun has a horrible effect on me and makes my dizziness much worst. I live in South Africa so the heat is unbearable at the moment. Try the blood pressure and fructose tablets as well as eating 6 small meals a day. My body has different needs at different times. Some days I get weak and start shaking then I eat more on that day. But remember it is what we eat that counts. All 3 of my diseases are connected so this method helps me a bit. But I am sorry to say it is no cure. At this point in my life I don’t believe I will ever find one. I have also had to learn to take life easy, don’t try and do everything in one day and ask for help. On worst days take it easy, if you don’t you are just going to make yourself sicker.

Dear Jamie I use to get migraines 3 to 4 times a week. Or a solid one for a whole week. I can still feel the pain and it evokes fear in me. I use to get such bad migraines that I felt I was dying and wanted to rush to hospital. For me the cure to my migraines was meeting my dietician. Migraines are your body’s reaction to foods or drinks. For some people it is coffee, oranges..... etc. For me it was the worst one sugar. I have learnt over the years to cut out sugar. I can't even eat tomatoes sauce or salad dressing with sugar in, then I get a migraine. Go and have a test done to determine what your body is reacting to and cut it out. I promise you it works. I have not had a migraine in a long time and I remember the pain so I will never do anything that would give me another one. I strongly advice a diet change versus medication. I use to take so much medication for my migraines that I look like a mini pharmacy. My doctor just gave me more and more medication. And this was seriously strong medication. The point is I was taking medication for the pain but not solving the problem. And the worst part was at the rate I was going with the medication I was going to land up on a kidney machine. Remember all the medication we put in damages our kidneys. Seriously find the course it is worth it. Good Luck!

Dear All I wanted to share some information with you. I have been doing allot of research and they say we need more sleep than healthy people. Well lately I have been waking up before 6 in the morning and when I do I notice I feel better than when my alarm goes off for work. The last few days I have been waking up when my body feels its time. The improvement is amazing. If I wake up and then go back to sleep for another hour or two I feel like death warmed up. I don’t understand this as I love sleep and have slept minim of 8 hours my whole life. It’s difficult to wake up but once you are awake it is definitely worth it. Try and play with the amount of hours you are sleeping and see if any off you also notice improvement. It funny to understand but I guess I will be doing ironing or reading at 4/5 in the mornings now. If it makes me feel better I can do with less sleep. I have been praying for a long time for God to just help me a little. If this is his way of helping me, my heart overflows with gratitude. Good Luck!

Dear Mighty Mouse I hope you are a lady or you are going really enjoy this mail. It is a personal question but are you on any form of contraceptive? few months ago I was dying of nausea and my doctor just changed my pill. I almost had instant relief. When you body starts getting use to a pill or it stops working there are signs. My body did not like my pill anymore and I was getting very nauseas. I am lucky my doctor changed it instead of finding out that I was pregnant before I changed it. Discuss this with you doctor, I have been having fun with my pills lately but the one I am on now is fantastic. Good luck, all my other thoughts have basically been covered. I wish you the best and hope you feel better soon.

Dear Kimbo I don’t have a miracle answer but I will try and help with some advice. Firstly go and see a dietician for a perfect diet for you to follow for the rest of your life. I eat six times a day. No sugar products, low in fat and carbohydrates. And I eat fruit like a monkey. This year I have had to learn to scale down on allot of things and take life easier. It is difficult but works in helping one feel better. If you use to clean your house two hours a day only clean for one hour. Ask for help were you can and get rest. They say we need more sleep than normal people. BUT THIS IS THE TRICK DONT SLEEP THE DAY AWAY. Force yourself to get out of bed. If you decide that 8 hours is enough then no matter what the day of the week only sleep 8 hours. It works I promise, if I sleep longer I get trapped and cant wake up. Then medication, I take allot of medication. In the mornings I take 3 multi vitamins for energy (always tired) I take a slow realizing fructose tablet for my sugar levels and a blood pressure tablet. In the afternoon I take the fructose and blood pressure tablets again. After supper I take calcium, folic acid, better blocker, magnesium tablets and antidepressants. Just before I get into bed I eat my last meal of the day and this helps with the mornings. No mornings are ever going to be fun again, but it does help a bit. I can’t take Florinef at all and Pro-Amatine because of my heart problem. I see my doctor once a month and we work with the specific problems for the month. It took 9 years to find a good doctor but it sounds like you guys have better doctors on your side. See your doctor regularly and educate yourself as much as possible on our problems. I promise you we know more about POTS than 95 % of doctors out there. I drink water like a fish out of water. Just don’t give up emotionally. It is very difficult I understand but accept your limitations and start looking after yourself more. My husband gets angry with me because I am a busy body and I have just had to start taking life easier. And anyway if I don’t I wont be able to become a mom. Good luck

Dear All Can you please let me know where some of your currently stand with you sicknesses. I told my doctor on Tuesday that some of you don’t work and have or are bed ridden. She could not believe it at all I would love to show her a letter from all of you. I am presently working full time, have a part time job every 3 weekend. I study part time and involved in the youth of our church. I am happily married and do 90 % of my own housework and have a beautiful black spaniel baby at home. Presently I cant do any form of exercise as cleaning my kitchen floor exhausts me. The longest duration I have spent in bed was about a month. I have been living at doctors for the last 9 years and have spent a fortune and I don’t believe I will ever feel normal again.

I got very ill last week Tuesday and had to go for injections to stop the shaking and get my body "normal" again. They have been working with me for the last two months about to prepare my body for the pregnancy. I must mention I am heart broken that if my health does not improve soon they have suggested that I seriously consider not having children. Due to the terrible lack of energy and many other problems I am petrified of how I am going to coup with a baby. I just passed out on Tuesday and lay shaking until someone found me at work. How am I going to have a baby if I cant even hold my puppy in my arms on bad days? They have changed all my medication to ensure that it will be suitable for the pregnancy. I am on 2 vitamins, calcium, and folic acid; slow realising fructose tablets and other pots related medication. You should ask your doctor to start preparing your body. We are not healthy and are going to need all the help we can get.

I get such bad chest pains that it feels as if someone has just stuck a knife in my chest. I normal say horrible words and fall to my knees in pain. I also get the daily chest pain which can hurt allot. I have noticed I get them after I have go upset but sometimes I get them for no reason at all. I frequently wake up with horrible chest pains. I have Barlow’s syndrome and the combination of pots causing the pain. I see my cardiologist annually and take Magnesium tablets for the chest pain. MAGNESIUM TABLETS WORK WONDERFULLY. I take two in the evening and they work wonderful, remember we have to get a prescription we cant just take any Magnesium tablets.

Dear Jill Don’t worry everyone's urine smells at some point. It is normally caused by the food you have been eating. You will notice certain medication causes discolouration and certain foods enhance the most interesting smells. I had my bladder pipes stretched last year. HURTS LIKE ****!! But it is so worth it. I use to get so many infections in my bladder and kidneys. You are only aloud one Bladder infection in your lifetime and 3 kidney infections. If you have more than this you have a problem. If you frequently urinate and have discomfort go and see your doctor. But I promise you, you will know when you have an infection. I usually get very high fevers, nausea, vomiting, pain and discomfort. I also pass out and feel terrible overall. Please get this checked out, imaging not having the usage of your bladder in your old age because you were to scare to have it cheeked out.

Dear Nicole I think society look down on people who have depression. But it is as real as a common cold. I suffer from depression and considering what I have been through I don’t blame my body for not copping. I take two tablets of Ciprimal in the evenings and it works wonders in my life. I can’t be with out it as I start getting horribly moddy, irritated and very negative. I have a wonderful clinical psychologist who has helped me more than I could ever have expected. I was talking to him about the pots and the shaking the other day. The shaking on the left hand sides is coursed by an emotional reaction. You emotional side in your brain is on the right side and the left part of the body is controlled by it. Therefore when I start shaking it is a way that my body is dealing with all these issues. I can break a bed when my body starts going for it. My antidepressant medication works fantastic for me, I would recommend giving it a try. Don’t be put of by what society says. If you not seeing a psychologist yet I would recommend seeing one. I always feel fantastic when I am finished visiting him. The sad part is he is moving to America soon so then I have to start shopping for a new one. Good luck and be careful to whom you talk to about this most people don’t understand depression but it is very real. My brother committed suicide on the 11 February 2003. He suffered from depression and never spoke to anyone about it. For me it is so important to listen to people if they feel that they are suffer from depression. I never had the opportunity to try and help my brother but please depression is very real and you can go very deep into depression. It swallows you hole before you even know. Please get some sort of medication and most of all TALK TO SOMEONE ABOUT IT.

Dear All I have to share something with you. When I got so ill this year my husband felt really sorry for me. I was a month in bed and he got me a puppy. She is a black spaniel and the best medication I have ever had. The first week in bed she just slept in my arms and we bounded. But after that she went full steam ahead. She wakes me up in the mornings with the most wonderful pulls, tugs and flea bits. And she does not understand Mommy is sick wait a while. In the mornings I pray just to get strength to drink my tea and eat breakfast. Now days Jasmine keeps me so busy in the morning loving me play and attacking her teddy bears. We are made for each other. She was rescued from a horrible home. In the beginning she was terrified and it took a long time to convince her that we were not going to beat her like her first owners. I got her with fleas, bladder infection, skin rash, food allergies and very afraid. She was horrible underweight and the vet says I am luck she survived. The first time I gave her food and water she did not know what it was and could not get enough in. My husband wanted to know at a stage who is seeing the doctor more, her or me. Jasmine is a beautiful healthy loved dog now and the best medication I have ever received. She has a major attitude and spoilt rotten. I must mention I bought her, her own swimming pool because she won’t stop swimming in her water bowl in my dinning room. My husband can hear me laughing in the morning and talking to Jasmine compared to silence of before. You should see my house there are toys everywhere, my husband and I are very neat and clean people and Jasmine is not I don’t think I will ever have a clean kitchen floor again. But it is FANTASTIC AND WORTH IT. I would recommend a dog for anyone like us. My dog does not leave me alone for a minute. She loves me and gets me through horrible times.

Dear Futurehope Sugar is absolute poison when it comes to us. But I so understand your feeling. A few doctors have promised that they can make me healthy. And then I have dreams of locking myself in a candy store for a few days. Just to catch up on lost time. Unfortunately this has never materialized. In the beginning when I was diagnosed with the first disease. I left sugar totally for a solid 3 months. I followed the diet exactly. DANGEROUS! My sugar levels drop so low, how I was still alive the doctor cannot explain. The point is the doctor gave me a diet and I followed it exactly. Normal patients don’t do this and cheap at least one a week. I was advised to cheat at least one a week. I could have a milkshake with my meal when I went out for supper. Or a SMALL chocolate after dinner once a week. You can try this and see if your body can handle it. I could do this for a few years. But unfortunately my body can’t even handle such small quantities any more. But try and I hope it keeps you happy even if only for a few minutes a week. Regards CHOCOLATE LOVER

My experience with Florinef was ****. Florinef keep me in bed for a month. Gave me the most horrible attacks and anxiety like you can't believe. Just hearing my phone ring gave me the fright of my life. Florinef did not improve my health at all, it totally destroyed my quality of life and I have 9 kg attached to my body as proof. It was the worst time of my life and would never recommend it to anyone. :angry

Dear All I was on Florinef for 3 months and have gained 9 kg from this terrible medication. You all know that we can’t skip meals, go on diets, exercise or even take water tablets. How did you all loose the weighted gained from Florinef? I have been thin my whole life and now I am 9 kg heaver. Noting fits me and I feel terrible. Please give me some advice I am so uncomfortable and hate the extra weight I have put on. Ling