Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 Hi my name is Heidi and I am a new member of the list.. I was a member a while back, but went offline due to the fact that we were moving.. Finally we are settled in and I am reconnecting with all my groups.. We now have a 5 year lease with the option to renew for life so I wont be going anywhere as long as the internet is there... LOL I am Heidi 34 from Sydney Australia.. I live with 64 and our princess and diva our cat Puddy... and I have quite an age difference but it does not bother either of us... We get along really well... I suffer from penicillin allergy, high blood pressure, osteoarthritis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, restless leg syndrome, protruding discs in lower back, 25% loss of back, 15% loss of legs, osteophytes in cervical spine and right knee, shoulder impingement, curvature of spine, bakers cyst, epilepsy, plantar faciitis and vitiligo... I take morphine, oxycodone and codeine for pain relief and Mobic (NSAID) for arthritis.. I also take another 16 medications on top of that... I am a very upbeat and positive person and dont allow things to get me down, there is so many people suffering in the world and it really tugs at my heartstrings... I look forward to being on the list and getting to know you all... Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 Hi Heidi, Welcome to the group! Love ya! Big Gentle Huggles from SE PA, Di ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 Hi Heidi, Welcome to the group! Love ya! Big Gentle Huggles from SE PA, Di ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 Hi Heidi, I will talk to you soon.My name is Antoinette I live in Belfast in Ireland I am the mum of 14yr old who has been housebound the past 2yrs with ME. Just wanted to say welcome . Talk soon Antoinette x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 What a nice bio Heidi and WELCOME to the group! You sure have your cup full and yet your upbeat. Most of on this board are most of the time but sometimes we have our times in the valley too. It's great that you have your husband of whom you love and he in return loves you. That is huge with any situation when we feel less than our best, we need our significant other to see we aside of our illness. Will look forward to seeing you around TC and God Bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 Hi Di And thanks for the warm welcome Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 Antoinette, Hi and thank you for the warm welcome.. I am sorry to hear of your sons suffering... This is an awful disease.. Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 , Thank you so much for the warm welcome... I am upbeat, I know so many people who have it worse off.. I could be in a wheelchair, I could have paralysis... I actually had my first ever reiki healing session today and it really made a difference.. I have had to take no breakthrough pain relief for 10 hours now... I am still taking the morphine, but I have not needed oxycodone or codeine which is good... My hubby (we are actually not married yet) but he is a sweetie, he is my full time carer and the most loving person you could ever meet.. He really cares for me, looks after me, cleans the house and makes me endless cups of tea.. He really is a sweetie... It is quite natural to have down times.. I am embarrassed to admit I went through a nervous breakdown about 4 months ago, my health went down and we were evicted because of the medical bills and we were homeless. I felt sort of weak because so many other people face bigger issues and I just crumbled.. But I am over that now and doing fine.... I look forward to getting to know you.. Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 Hi, Heidi! I'm glad you've found your way back to your friends. I love your attitude and share your positive outlook. I'm looking forward to getting to know you, and all the great folks on this list. ~k Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 Welcome Heidi. It sure sounds like you have plenty of illnesses on your plate so I'd suggest not adding any more in the future. LOL. I envy you having a husband that you get along with as I think that is such a helpful thing. How do you stay upbeat with all of your issues? I have CFS, fibro, depression (controlled) and no thyroid. I have more trouble with the CFS than the fibro except for having a great deal of trouble with my hands and arms. I have carpal tunnel syndrome and cubital tunnel syndrome, and I'm told the fibro probably settled in those areas as they were already weakened. Fortunately I can tolerate my pain mostly and just take pain meds when I absolutely have to. I think I take 10 medications though, perhaps more plus supplements. I haven't worked since May 2004 when I had a reaction to going off a med and developed a movement disorder. I had been functioning up to then using amphetamines. But due to the potential for the movement disorder to come back I can't take amphetamines or any med that has even the remotest possibility of causing any type of movements. I was lucky I was finally able to get off the meds for the movement disorder but many people have to be on it for life. And it is a horrible med to be on. In any case, without the amphetamines and recovering from being so ill with the movement disorder I never went back to work. I live alone at the moment but have three cats and dogs to keep me company and they make the world of difference for me. I look forward to getting to know you. How in the world did you find a rental that you can have for life? And is the rent controlled so that it can't go up astronomically? Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 Welcome Heidi and Kyra! I have had severe ME for 20 years along with all its attendant woes. Hope you find info, encouragement, and help here. Aylwin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 Don't feel bad Heidi.this disease can strip you of everything.even your home.also we often have no stress hormones left to help us deal with life stress.no wonder you broke down.it's a very tough thing.hope you are housed now and things are settling down for you. You are very lucky to have such a supportive partner. Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2007 Report Share Posted July 23, 2007 Kyra, Thank you so much for the warm welcome There are so many more people worse off then me so I dont let myself get down about it.. It could always be worse Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2007 Report Share Posted July 23, 2007 Aylwin, Wow you have suffered for so long and you are so upbeat.. Thank you for the warm welcome.. Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2007 Report Share Posted July 23, 2007 Aylwin, Yes we are now in government housing, it is highly subsidised, is my carer and on a carers pension so they take 25% of our income on it.. We are managing well now... We are not millionaires of course, but with careful budgeting we dont miss out... I just see people going through worse stuff and thought what am I doing??? But I am over it now and doing fine... Things have settled in well... We also have a 5 year lease with the option to renew for life so we have some stability at least... Thank you for your kind comments Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2007 Report Share Posted July 23, 2007 Sandrea, Wow you have so much more to deal with than I do.. As I was saying in a previous post there is always somebody worse off... The old fibro fog has me and I cant remember if I mentioned that I have schizophrenia.. I am well medicated and very stable so dont be scared LOL I think the medication helps a lot too, I take an anti psychotic, mood stabilizer and anti depressant, all in large doses.. But I have always been an upbeat person... I have been described as so happy it makes people sick LOL Not to say I dont have my bad days, the days when the pain is there and I just lie on the lounge and have a little cry.. But that doesnt happen too often... That is a shame you had to go off the amphetamines since they were helping you so much... But I guess with medications there is all sorts of side effects.. That is like I think I might have drug induced Raynaud's Phenomenon... I dont really know a lot about it but it causes pain in the hands and I get this sort of rash that looks like a slight burn.. Luckily I have not got the pain and the rash does not hurt unless I brush it against clothing or something... Apparently Inderal which I am on can bring it on.. So I am going to ask the doctor about it on Thursday when I go... We are in public housing... The wait in this area is up to 25 years.. But because we were homeless and living in a refuge/halfway house and because of my illnesses they gave it to us straight away.. Although I had been on the list since 2001.. If or I were to pass away we would be downgraded to a smaller place, but as long as we both stay alive we have it for life.. But we do have housing for life, they will move us around if anything changes... We have a pretty good public housing system here, they do help when you are in need... Hope you are not in too much pain today Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2007 Report Share Posted July 23, 2007 Sandrea, Interesting you talk about carpel tunnel. I have most recently along with all this fluid retention have terrible pain in hand and arm. My right hand is more swollen and feels literally cut off at the wrist. I have not posted heaps because it's sooo bad. My overall pain is over the top but I get my wheels today Yipee!! Pray that helps me somehow! Every joint in my body hurts but especially wrists..arm swollen to elbow in fact. Sound like what you have? God Bless, > > Welcome Heidi. It sure sounds like you have plenty of illnesses on your > plate so I'd suggest not adding any more in the future. LOL. I envy > you having a husband that you get along with as I think that is such a > helpful thing. How do you stay upbeat with all of your issues? I have > CFS, fibro, depression (controlled) and no thyroid. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Hi Heidi, I have learned through much pain suffering severe depression most of my life, that sometimes it makes no difference if we are better or worse off than others because our reality is what it is and sometimes that is a lot to deal with or more than we can handle. There is no need to feel weak or ashamed of having a nervous breakdown. Things have gotten too much for me many times although I am now doing much better emotionally than I was years ago. I think that people break down in different ways when things get to be too much and yours happened to be mentally/emotionally. I'm glad you are doing better now and have a more positive outlook. Just don't forget to allow yourself to feel however you feel and if you need to feel down do so. Then pick yourself up and move on. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Goodness Heidi. Sounds like you are doing well with managing your schizophrenia and all the physical stuff as well. . I took an antipsychotic for six years for obsessive thinking which accompanied my depression. When I stopped taking it I developed Tardive Dyskenesia. I'm sure with your background you have heard of this. In any case mine was an atypical presentation and my psych said she had never seen anything like it and she worked at a clinic where she'd see 100 patients a day who had TD. I saw a second psychiatrist for a second opinion and he also said he'd never seen anything like mine. Then I saw a neurologist who was also a psych and he said it most definitely was not TD and not to worry about it. I was hospitalized 2 days later. Fortunately there was a neurologist specialized in movement disorders there that my psych knew and he diagnoses it right away and got it under control. Anyway, I guess it's also not so common to get a withdrawal dyskenesia as to get TD from being on an antipsychotic. I took a really low dose, 2-3 milligrams a day of Risperdal. Anyway, I started movements in Dec 2003 and was so bad off that I had to be hospitalized in May to stop the movements. That's when I had to stop the amphetamines so I had to go through withdrawal from those. I asked my current psych about Provigil as I know some folks are helped by that, but he said that in the study of it 1% of 500 people had developed movements and that he wouldn't prescribe it. I was extremely lucky to be able to get off the meds without having the movements return. But he said if I developed it again I might not be able to get off the meds again. I lost 30 pounds before I was hospitalized because my head movements alone were so bad that I was nauseous and couldn't eat. Then I started taking Clozaril and gained 65 pounds in less than 6 months I think. That med is horrible. I was told it is the worst one for making you want to eat and slowing your metabolism down. I have no idea how folks who have to take the high doses needed for schizophrenia manage not to get TD when I took such a low dose and did. Do you have a hard time with your meds making you sleepy and out of it so that you don't want to take them? I know many people do. I don't know about your perspective on this. Since I have suffered from severe depression most of my life, and now it is so vastly improved, I find it much easier to deal with the physical disabilities. As hard as it is to have all these limitations and such, I would much rather have physical issues than mental issues which are such torture. I am so glad that you were given housing and don't need to worry about having housing in the future. That must be a huge load of f your mind. Are you able to have pets in public housing? Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Yes except that I have it in both hands/wrists/arms. I bought speech recognition software so that I wouldn't have to type but I had no patience to train the damn thing and gave up. I keep telling myself to try again. Maybe when things calm down I will. I do feel that carpal tunnel splints seem to help more times than not with my right hand and not normally with my left. I have made many adaptations to accommodate this stuff. I had an OT eval and the OT set me up for an ergonomics eval. She recommended a keyboard rest with a negative tilt, which means that the far side of the keyboard is lower than the nearer side. I can adjust it as needed but this puts less pressure on my wrists. Also, I got a better computer chair and footrest and also a chair that I could lower the arms to give myself a better angle down. I bought a jar opener off ebay and it is the best kitchen invention ever I think. When I need to open a jar I stick it in the opener, press a button, and the jar opens instantly. Electric can openers help. Also, she gave me some stuff kind of like pipe insulation but much smaller. I stick a pen in it and that gives me a built up pen. It is easier to grip. Also some fat pens help, some are worse. They have different sizes of the stuff so you can use it anywhere you need something built up, and it is reusable as well. I can't write much anymore, just notes to myself or lists. And I do limit my typing a lot. I got a pretty think cushioned steering wheel cover for my car and that helps a lot too. A lot of kitchen appliances that are electric are easy to find in thrift stores so that's where I got most stuff. I have found that really good poultry sheers are great for cutting up any kind of meat. Veggies are harder to cut for sure, but I have a mini chopper that I can use for some stuff . If you look IIF you look on the internet at supplies for folks with arthritis there is all kinds of stuff out that that might be helpful. Some of it you can look at and figure out how to create yourself. Other stuff you can possibly find on ebay. I did try battery operated scissors but couldn't get anything to cut. Of course I also seem to have little talent with the electric can openers. I had to have someone teach me to use the darn thing and then half the time I can't get it to work for me. Anyone else who tries it it works just fine. I also find that my hands are incredibly sensitive to temperatures. If water is too cold it causes excruciating pain. My rheumatologist wanted me to do an arthritis foundation water exercise class. The warmest pool I could find was I think 83 degrees. So, besides the fact that it was too much for me with the CFS, I had to go home and take pain pills the pain was so horrid. I think if I could find a warmer pool it wouldn't be so painful. But too hot also causes pain. When I chose my scooter I chose a kind that had levers that pull toward me with my fingers as opposed to ones that have levers you push away with your thumbs. I can't do the thumb ones it hurts too much. Mine has a very light touch, but I still have to limit how much I use it due to pain. Some days are better than others. I hope you can find stuff to help you. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 I cannot believe what I just did I wrote such a long response and lost it in one failed swoop! I can't re write it now sorry Thankyou for your help and I will be paying closer attention to what I am doing to save what I have left! Huggles! > > Yes except that I have it in both hands/wrists/arms. I bought > speech recognition software so that I wouldn't have to type but I had no > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2007 Report Share Posted July 25, 2007 WELCOME TO THE GROUP KYRA!! Sorry I am just getting to this post but glad to have you here and hope to get to know you better! I always remember that it could be worse unless I'm too far outta it to think! LOL God Bless! > > Kyra, > Thank you so much for the warm welcome > There are so many more people worse off then me so I dont let myself get down about it.. > It could always be worse > Hugs and Healing > Heidi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2007 Report Share Posted July 25, 2007 Hi Sandrea, Thank you so much for your words of kindness and support.... It is the second time I have suffered one... The first was in 1991 when I had my back injury and I had to give up work... I was always an active and busy person and all of a sudden I was bed bound for 6 months.. I am glad you are doing so much better emotionally.. One thing I noticed I am stronger because of it, I can handle a lot more stress now and stay stable.. The old fibro fog has me and I dont remember if I said I have schizophrenia with borderline tendancies... I also suffer from slight ADD. I take Stelazine as an anti psychotic, Lamictal as a mood stabilizer and Avanza as an anti depressant.. Now that I am on higher doses I am very stable.. In fact I have not had a low for about 3 months.. Although mornings are bad for me, that is when the osteo and fibro pain hits and I find it hard when I first get up.. I have an uplifting oil blend near the bed and I take a sniff and do some affirmations now and I am able to handle the mornings a lot better... Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2007 Report Share Posted July 25, 2007 Sandrea, Yes tardive is not good.. Luckily I have never suffered.. Though they dont know if the restless legs is medication related... I am so sorry you suffered... Wow you have been through a lot... I am so used to my meds they dont really make me sleepy anymore.. I do find my sleeping meds give me a hangover though.. But it is the only way I can sleep... When I am feeling right mentally, which I am now, I take 20mg Stelazine, 300 mg of Lamictal and 80mg of Avanza a day, I am able to handle the physical side of things a lot better.. I am at the peak of how I have felt mentally through the years, I am smiling, joking and happy all the time, except for the mornings as I explained in my previous email, but I am getting better... Yes we are able to have pets.. We have a cat called Puddy... We are allowed to have as many pets as we like (within reason) like 100 cats is not on, but a few would be okay.. I actually used to have 14 cats when I lived semi rural with my ex... I had up to 20 at a time in the house... I used to take them in from animal welfare and rehabilitate problem cats to be readopted.. The house was huge, but 20 litter boxes really took time to empty LOL They say you should have at least one litter tray per cat, although some will go together, it just depends on the cat... Puddy is a lovely cat.. She has this habit of putting one paw in my UGG boot and walks around with it on her foot.. I am still waiting to catch her with the camera one day... LOL Hope you are having a good day Hugs and Healing Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2007 Report Share Posted July 25, 2007 Morning Hon, dontcha just HATE slaving over an email only to lose it??? I never have enough jam to recreate them.xoxAylwin Quote Link to comment Share on other sites More sharing options...
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