Ling

Thinking of you and be strong I promise you are going to make it through this time of your life. Firstly you are important remember that. Eat and eat right, we all know we have to eat. Even if you grab and run. But eat, food is very important. As with regards to stress try not to bully yourself too much. It is wonderful to remember horrible things as a healing process within but don’t hammer yourself to death. Talks to people about the pain you are going thorough. I still talk about my brother and miss him everyday. I lost him over a year ago, very ugly he shot himself to death and I watch him dye. Take medication that will help but be careful you don’t overdo the medication and become useless to yourself and others. Take it easy on yourself, breath handle the situations as they come. Remember do not forgot about your bodies important needs. As for your body doing what it wants to you can only do so much. I don’t handle stress well and almost always end up shaking and sick. Be strong, thinking of you and once again LOOK AFTER YOURSELF! I beleive if you breath, eat and take your medicaiton you will improve!

My gyny did my annual check up and I screamed while he examined me it was so painful. The operation just confirmed that I have Endometriosis and removed all growths from the areas affected. The operation was much worst than I expected. I research and spoke to other ladies and never expected the amount of pain I had after the operation. But obviously it will be worth it when I have a baby one day.

You will know something is horrible wrong. Is very painful. I had it between my rectum and vaginal wall. When menstruating I could not even sit down or go to the bathroom. I also am very sensitive there; bleeding more often even thought I was on the pill and painful sex. I just thought I was always sensitive and that it was nothing to worry about. I stopped the pill and all **** broke loos. The pain became unbearable. The rest is correctly described.

I have told all of you about Jasmine. Well she is still the best medication I have. Last week she did not leave me alone and insisted on sleeping on my stomach. I have to cuts and she knew that and only wanted to put her head on them to comfort me. She insisted on sleeping in bed with me the whole week. Dozy my new baby in my life does all the entertainment for us. People would think we don’t feed him, if they came to visit suppertime. Jasmine is beautiful and thin and Dozy is Fat quote from the vet. They are nothing but a daily blessing in our lives and help me get through the most horrible of days. I would recommend getting a dog for anyone with all our problems. They are better than any medication or doctor. Dont know what it is but they help me everyday.

When I went into hospital I was not aloud to drink for 12 hours. I nearly died. Could not stop drinking water once I came out of theatre. My bladder did not want to work either and eventually rushed back to hospital the next day to get a catheter. Nurse from **** put it in. I should have hit her for causing me so much pain. She said I was dehyrated? Why must we not dehydrate? I drink water like a fish out of water.

I take Inderal once a day 160 mg. Increased the dosage recently due to bad chest pains. Works great for me and I take Effortil twice a day for blood pressure

I am back at work after my operation. I definitely have bad Endometriosis but my doctor was very worried on Monday evening when he saw my husband and me. At some point in my life I have damaged my F. tubes. They are very swollen and red. My gp was in theatre as well with my doctor. I was lucky to be in excellent hand the day of the operation. My husband and I have to start our family immediately, they aren't very sure if I will be able to fall pregnant the normal way. It is going to be one long and hard road ahead for us. My gyny does not want me on any medication once we start trying. I am petrified of life without my heart and blood pressure tablets. I have started taking the pill again he only wants me to menstruate every 4 months. This will help in keeping the damage stagnant and hopefully not growing. I have started my pre vitamins and once I get the go ahead from my Cardiologist I will stop all the other medication. We basically are looking at starting to try in January we only have until December. Then we have to start other methods of falling pregnant. Just when you think you have collect enough diseases, your body gives you a few more. It is getting blady ridiculous at this point. But what can we do. I now have the facts and knowledge and have started walking the obviously difficult road ahead. How did you moms live with out medicaiton?

Dear All I wanted to add some positive ness. I have the heart, tiredness, pain and many wonderful things happening in my body. But not once have I thought of declining my husband. He is amazing, the more I get to know him the more attracted I am to him. I am absolutely adicted to him. Definitely have a higher sex drive than him. I always say if other women know what I know about my husband I would have allot of competition. I have just had an operation last week and he but always just amazes me on his sensitivity and pacients. Any way I love him to bits and get excited every time as if it is the first. Seven years later and he still makes my tummy turn when he kisses me.

Have you done any research on Fibromalgia (spelling wrong)? Your situation sounds horrible, I am sorry to hear you are battling so much. My pain is mostly from my heart, pots and the worst is Fibromalgia. Some days I cant comb my hair it is too painful. My skin gets horrible sensitive and the pain can get unbearable. I have injections in the area that is most painful when it gets unbearable for me. Thinking of you. Dont give up find a doctor that can help. It took me 9 years to find a real Doctor and she is excellent.

I am so happy for you and go out and take on the world with both hands. Always keep your focused on the Lord and you are more than half way there. When hard times come and you get sick or worst we will always be here for you. But remember the strength within can only come from the Lord. Everyday that you can do "normal" things remember this is a wonderful blessing the Lord has given you. With out the Lord in my life, I would not be here today.

Dear Jessica My heart breaks for you and I understand all to well. I have a few tips no one has mentioned. I don’t eat sugar before I sleep it keeps me awake. But coffee makes me sleepy. The sugar problem for this one. I take Magnesium tablets for heart cramps and this has help me allot to sleep better. I recently increased my Inderal to 160mg and this too has help me sleep. A very slow heart rate has improved my sleeping allot. I must be honest I do wake up at least 2 or more times a night. To go to the bathroom, drink water or if Jasmine wakes me up to go to the bathroom. Been like this my whole life, don’t know any other way actually. You sound like a wonderful normal mom to me. Who is probably just over stressed and exhausted at the moment. Try and keep one day a week open where you do nothing. I have chosen Saturday to sleep late and do nothing physical. It gives me more energy to face the week ahead. This helps me with the chronic fatigue syndrome problems. Thinking of you and relax more!

I just wanted to warn you all to be careful in the swimming pools. My heart gives me problems if I play to long in the pool and I have to sit on the stair allot due to wanting to pass out. If you pass out in the pool alone no one is there to help you. Be careful and safe all. I blacked out Friday night after climbing stairs. My husband was a few metres in front of me. Thank goodness I did not black out on the stairs. I did rest half way but this could have turned ugly. Now my husband and I know we climb stairs together. My butt was very sore after words. Boom on my bum. Imagine if I had a baby in my arm, scary all these stupid problems we have. I live in Nelspruit South Africa and temperatures in summer can reach well above 36 ? C but thats not half as bad as the humidity we have. I normally run for the bathrooms because I am so nausea after a few minutes in the sun.

I am going for a check up on Thursday to confirm. Do any of you have Endometriosis? Another thought I have been having. Will our bodies allow us to fall pregnant if we are constantly sick?

Dear Futurehope I have been thinking about you all day. I know exactly how you feel and where you are at the moment. Please do yourself a favour and read that book. I defiantly think you are at a stage of you life where you need it. I want to cry through most of the chapters anyway. No one is going to understand us except people like you and me. I was so angry yesterday I heard of a mom who never holds her child or plays with it or anything. I don’t know if I will ever be able to hold my child in my arms for long. I can’t even play with my dogs less alone an energetic child. People don’t understand or get it. Fact! As for medical help, I have had 10 years of very expensive experience. I do regret spending so much money on nothing. What are we actually trying to gain? Even the knowledge we get I don’t think is very healthy. My doctor has told me to stop reading up about my diseases and keep my contact with you all to a minimum. Naivety is sometimes mentally healthier for people like you and me. Don’t waste your money, time and energy on nothing. I have spent way too much time, energy and money on something that I have no return on. Think about it.

Dear All I have recently again been told that I am looking better. I have mentioned before that nothing health wise has changed but my attitude has changed considerable. I read an article this weekend in the latest reader digest. A doctor asked his patients who want to live to see a hundred and who did not. All the patients who wanted to live to be a hundred recovered from cancer and the others did not. We all know how hard pots is and having daily wars going on in our bodies. I want to encourage all of you to make peace with our problems and accept what we have. There is no medication or miracle cure for us. So lets change our mental states of mind we all know we cannot change the physical problems. I am reading a book I would like to recommend. I believe it will help all of us fight Pots. (Even if you are not ready to read it today, due to your personal reasons) Please go out and buy the book and keep it until you are ready to read it. I promise your life will never be the same again. And I believe it will give you the mental energy and will power to tackle Pots head on. You have nothing to loose and it is only 2 to 3 pages a day to be read for 40 days. My husband hates reading so I might have to convince the non-readers little more. Thinking of all of you. The purpose driven life by Rick Warren

Just wanted to warn you that you might feel this intense pressure on your heart in the water and want to pass out. I have read that we should not do any form of water sports. Lets face it we pass out so quickly. I know with myself I can't always say when I feel like I am going to and when I actually do. Just don’t be disappointed if this happens, swimming has even changed for me. Hope you turn out to be a happy water baby.

Sounds like Fibro to me too. I get it so bad sometimes that showering or combing my hair hurts. My doctor lets me take 3 brufins a day for pain and just increases the mediation during bad spells. I often go for local anaesthetic injections "mixtures" as well. But this hurts like ****. Get some information of the net about Fibro, she will know immediately if it’s her problem as well. The one good thing is it does move around, so today your back, next week your feet etc. My best medication is my 11-month Black Spaniel baby girl. She does not understand the word sick and keeps me going. O did I mention I now have a little boy as well, he is 13 weeks and eat way too much. We got him for Jasmine but what a blessing in my life. My dogs are better than any medication on the market for me. Especially on very bad days. Hope you all have a furry friend helping you through your days!

Sounds great, very long lists expected. Will be looking out for this next week.

I had very bad swelling when I was on Florinef. The one side of my face was more swollen than the other side. I have been off Florinef for 7 months now and have only lost 2 kg of the 12 I gained in 3 months. I can wear clothes today that won’t fit in 2 or 3 days time. I have only had this problem since the Florinef. I swell up terrible some days. I have had to make my wedding ring 2 * bigger and had one removed emergently one day. I just swell up like a balloon some days. Very frustrating and depressing but what can we do. I tried water tablets but it affected my heart terribly. Look at your medication, but other wise I have been advised to live with it. Hoping it settles down. I have recently heard that it might be my heart medication as well. I had to double the dosage due to bad chest pains recently so what to do, I dont know.

I have had about 5 of these attacks, but mine were during my sleep. I went to a specialist and he just said it was stress attacks. SCARRRRRRY STUFFF. Luckily I have not had the breathing problem with my seizures yet. Thinking of you, take one day at a time. O and enjoy your daugh ter you are so blessed to have her in your life.

I have it with my hands and feet, sometimes worst than other times. I was told it is just part of our problems. Not a nice feeling I know. Just accept it and learn to live with it I do.

I am so glad to hear you have the same problem as me Mighty Mouse. I go for injections when the "fibromyalgia" gets to bad. I can't put into words how painful they are but it works for a while. My feet also are very painful, but my body likes makes turns for different parts to hurt. My hips also hurt most of the time but at the moment it is my back and arms giving me grief. Why do we have so many symptoms? You sound like me I have 5 in total now and hope they stop. But the more I learn and read up about Pots the more I realise that they are all linked.

Dear All Could you tell me if you have ever felt trapped in your body? That every movement feels like you are a robot and hurts. I can’t do any form of exercise anymore and am trying to do yoga again. I can't lift my arms or legs as far as use to. Its like they are restricted. That stupid heart doctor of last year warned me against letting my body degenerate. Is this what he is talking about. But how do they expect us to do exercises with all the problems we have. Washing my dogs is an exhausting achievement for me in my life. I climbed stairs today and nearly died, just smile to the passes by but boy did I feel 80 +. Please tell me one of you have also got this problem?

It is beyond me how we can have so much heart pain and problems and it can't be damaging or fatal. I have had days were I fall to my knees in pain. I have even once thought I was having a heart attack the pain was so intense. I have pots and Barlow Syndrome and yet they say I must not worry its "normal". These doctors have a different normal than we do. As for the blood pressure, I take medication twice a day and can't even get it to be "normal". My blood pressure is always low and I am use to it. I remember when I did my tilt test they could not believe that I did not pass out. I have had this problem for so many years I just fight it and take my tablets. Medication helps a bit but does not take the problem away. I am petrified that once my husband and I want to start a family I have to leave all medication except my heart tablets. Can you imagine a passing out pregnant lady in constant pain. Funny sight. Good luck

I have seizures a little less lately since I have increased my heart medication. It is definitely related to stress or trauma. I often get them after an upsetting day. I have also noticed it has something to do with my heart. My boss has carried me out of work having a seizure. I forgot to take my heart medication the night before. Good luck in finding a doctor that knows what they are. My Heart specialist did not have a clue and I had one in his rooms. My doctor on the other hand is amazing and understands most of the problems and if she doesn't she goes and learns more about it. You tired after one, feels like a work out. Good luck! : P