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Posts posted by jefa

  1. so interesting to read all of your comments about how those closest to us can fail to see so much. My husband has not been particularly lacking in understanding, but about a month ago, he became ill with depression. This is the fourth serious bout in his lifetime and the second since we have been together. We will get through this time like we did the last time, but it has been an eye opener for him as he has suddenly become aware of how my life has been going as he has been hit with extreme fatigue, a lack of energy, loss of appetite and breaking into tears for no apparent reason. He said to me the other day, So this is how you feel? Even though he had been there before, he had forgotten the specific symptoms. I said, "Yes, and add to that the Raynaud's, sore joints, stiffness, itching skin, reflux, constipation, etc.." He gave me a big hug.

  2. Perhaps the law varies from state to state, but in California at least you do NOT own your medical file according to this source:


    Disability: Patient Rights


    Who owns medical records? Do the records belong to me? No, they do not belong to the patient. Medical records are the property of the medical provider (or facility) that prepares them. The patient has a right to view the originals, and to obtain copies under Health and Safety Code sections 123100 - 123149.5. California Medical Board.


    You are entitled to see them or get copies following the appropriate protocols.

  3. Actually Sheryl, proton pump inhibitors (all of the drugs mentioned here in this thread) do not get the acid working--they actually work by completely blocking the production of stomach acid. They do this by shutting down a system in the stomach known as the proton pump.


    Yes, it is important to have nothing in your system before you take it and not to eat for at least thirty minutes after. I get frustrated in the morning because I have to take the omeprazole then wait until I have had my breakfast before I can take my anti-inflammatories which themselves take a while to kick in. These means I am stumbling around in pain for a couple of hours before I can finally get myself in gear.

  4. The drug I take is the same as Prilosec but in Britain it is called Omeprazole. I don't know what I would do if I had to cope with paying for all the medical expenses. We do have to pay a fee for each prescription which used to be a little more than the otc amount, but now that I am on incapacity benefit (similar to disability) the fee for all the meds is waived. It is a big help.

  5. hi, Rochelle. An interesting question. Have you put rings other materials on that finger with different results? I am thinking that maybe it is just the pressure of the ring, not the material it is made of. In the Wikipedia entry for platinum under precautions it says,


    According to the Centers for Disease Control and Prevention, short-term exposure to "platinum salts may cause irritation of the eyes, nose, and throat" and long-term exposure "may cause both respiratory and skin allergies."


    Nothing said about platinum used in jewelry.

  6. I take my cane with me anytime I go, because I almost always need it. It does come apart so I can put it in my bag if it gets in the way. I have found that anytime I go out to do shopping, I am down for about three days after. Recently my son visited from the US and I planned active days between resting at home days and tried to arrange cooking, etc. with less involvement from me. I stocked up on paper plates, for example. I have found it helps to try to take a short nap every afternoon which revives me in time for the evening. Like Ann says, I have come to completely depend on the internet for shopping. I started very early this year with holiday gifts so I don't have to go out at all during the crowded times.


    As for baking, I plan ahead by doing that day's regular meals with leftovers or take out and use my food processor to make cookie dough instead of mixing by hand. I use baking parchment for easy cleanup after. The smell lifts my spirits considerably.

  7. This thread is full of thoughtful and useful advice for Denelle and all of us. I was particularly touched by this quote from Shelly:


    Although many of us might expect to be greeted with love, compassion and understanding upon becoming seriously ill, the reality is that most (if not all) of our associates are likely to react strangely -- sometimes with outright denial that anything is physically wrong with us, sometimes with very unhelpful suggestions for worthless remedies, sometimes with a cold shoulder or even fears that we will become dependent on them or a financial or psychological burden; or worse, they secretly fear that we might be contagious so they stay away completely.


    Ironically, it doesn't mean they love us any less. We can still enjoy happy relationships with most of them, provided we learn to cut them a ton of slack (drastically lowering our expectations), focus on learning how to ask plainly for what we need without any type of manipulation, and take responsibility for learning how to adjust to the new and startling demands that illness places upon us.


    Thanks, Shelley. Much food for thought here.

  8. Sheesh, what a story (Daphne: Daughter of Scleroderma/Polymyositis/Antisynthetase Syndrome Overlap Patient ). I know that the world is full of competent doctors and specialists working to understand, treat, and potentially eliminate these horrid diseases, but this story's accounts of repeated missed opportunities sounds all too familiar. Even though Daphne was a nurse and working closely with her mother's health carers, there were just too many events that seemed incompetent. She is lucky to have made it through the ordeal. It is so important that we educate ourselves as much as possible and insist that our medical professionals are giving us the right care for our own circumstances.

  9. You make a good point, Irene, about posting all the various experiences so each of us can gain perspective. I do think that is the most valuable thing about reading and posting here. It is so easy when you are flying solo to either blow your own symptoms/reactions/feelings out of proportion and end up in panic or to talk yourself into believing that you are imagining the whole thing.

  10. Hi, Tara. In 2003 I saw my first rheumatologist who diagnosed me with probable rheumatoid arthritis at the time. She was asking me about rheumatoid nodules and I showed her a strange patch on my elbow which had been worrying me. The skin was reddened, a bit itchy and cracking a bit. She looked at me like I was stupid and said, "It's just dry skin." I felt foolish. This same elbow continues to give me trouble, though it isn't cracked now. I have applied various creams and moisturisers to no avail. The tip of the elbow is reddened and is sometimes tender to the touch. The other elbow has thicker skin, too, but isn't tender to the touch. I don't lean on my elbows.


    If it is only the colour that bothers you, perhaps you could apply a cosmetic foundation to the discoloured elbows.

  11. These scary moments with our kids can really add to the stress in the best of circumstances. My son was in two accidents, one of which left him unconscious for three days. I couldn't think of anything else and I wasn't even sick back then. That same son is now a parent of two lovely children and having to face these moments on his own. The others are right, though. Don't let yourself get run down and hug him (gently) whenver you get a chance.

  12. my hip pain is also due to osteoarthritis like Piper and Sam. The pain can be nauseatingly strong at times, like a toothache. If I walk for any time at all it bothers me for days afterwards. I have had bursitis of the shoulder, but not the hip. It is quite a different kind of pain, more generalised, hot and pressure sensitive. With my shoulder, I found a hot shower, muscle relaxers, nsaids and rest to help.

  13. Thanksgiving has been a frustrating day for me since I have lived in Scotland where I never even got the day off when I was working. I have given up trying to work a turkey into the celebration - we have a lot of turkey through the year anyway. Turkey thigh meat is substituted for most of our beef recipes.


    I do take the opportunity to call everyone back home and usually send a basket of cookies or flowers to be represented at the table. This year we are going to have vegetarian haggis for dinner and I will be thinking of all the wonderful new friends on this forum for whom I am most thankful.

  14. It can't have been easy for you to have gone through all of this with your mother, Chuck. Like Heidi says, there is no way you can tell from specifics how an individual will react. Reading through this forum and the stories on the main site, however, many people have had fingers or bits removed and got much better later on. I hope you will take each day at a time and make sure you let your mother know how much you love her and care about her. Hopefully you will have a long time together, but at least you will always know you let her know how you feel.

  15. Like janey said, it is encouraging to hear from someone who has successfully coped with this illness and all of its tangled manifestations for so long. Even the best coping mechanisms (supportive family and a sense of humour among them), aren't enough some times and there are those days when you want to say. I don't want to play anymore. That is the benefit of forums such as these. The real people who are posting here suddenly become that much closer when you start posting too. I am glad you have.

  16. I have not yet been diagnosed with scleroderma and it is possible I may never get such a diagnosis. Reading through all the posts and stories on the site, it is obvious that many people take years to get a diagnosis, or the diagnosis itself keeps changing throughout the journey. Each day when I log onto this site, I keep seeing names of many other forum members who have not yet posted and I wonder whether some of them might be hesitant because they feel trapped in this same diagnosis limbo.


    In October of 2002 I had a total hysterectomy for endometrial cancer after several months of postmenopausal bleeding. There was no need for radiation or chemotherapy and I recovered quickly. After 6 weeks I returned to work. I made a trip to the US to visit my family and picked up an upper respiratory viral infection from one of my grandsons. Considering how quickly I recovered from the hysterectomy, I couldn’t believe how wiped-out I was by this illness. When the symptoms of the URVI waned I experienced something new to me—an acute inflammatory attack. I was overwhelmed with a general feeling of nausea, sweats, fever and fatigue and I had swelling in joints all over my body as well as in lymph nodes, tendons, etc. My general practitioner first thought it was still part of the viral infection, or that I had returned to work too soon after my hysterectomy. The violent symptoms began to subside, but I continued to have inflammation and swelling in my hands, feet, elbows, shoulders. My general practitioner prescribed Celebrex for the inflammation. I kept adding symptoms to the list (my fingers were tight and felt heavy, I couldn’t reach behind my back, my grip failed at times) and she began to question whether I was depressed and offered medication, which I refused. I showed her an article on rheumatoid arthritis, which outlined most of my symptoms. She referred me to a rheumatologist who finally saw me in September 2003. While I had the required number of clinical symptoms, with a negative RF factor and ANA he would not formally diagnose it because the symptoms were not aggressive enough to justify the use of disease modifying anti-rheumatic drugs. The initial x-rays showed no synovial erosion and while there was always evidence of elevated ESR and CRP, the figures were not drastically high. I had appointments every six months, each time being seen by young doctors on training rotation. Each was a carbon copy of the previous ones as if it were the first time I had ever been seen. Each one wrote up summaries quoting no change in the x-rays, even though only one set had ever been taken. I was given a course of Plaquenil but it had no effect.


    I worked progressively fewer hours as I continued to experience a great deal of fatigue, pain and inflammation. The air conditioning in my office made my hands, neck, feet and legs cold. I typed with fingerless mittens or sock tops over my hands to keep warm. The fatigue was cumulative: I grew more tired and unable to function as the day wore on and also as the week progressed. Since May of 2005 I have felt so unwell that I could not even manage the trip to work without exhaustion and a feeling of shakiness and queasiness. Currently I have difficulty moving around when I first arise and wake up with pain and stiffness in feet, hands, knees, shoulders and hips. I spend the day alternating between sitting and standing, breaking up my minor household tasks into short manageable bits. I have considerable pain in the joints near my wrists and the joints where my fingers join my palms, especially my thumbs. The same joints are affected in my feet. Sometimes my right ankle gives under me and I worry about falling. I use a walking stick when I leave the house. I have trouble sleeping, waking up many times during the night with pain. I usually need a nap in the early afternoon, typically no more than an hour and a half. Prior to this I feel queasy, shaky and weak. My hands and feet are noticeably hotter during the evenings.


    During this time we moved to another area and I had to start with a new general practitioner. At the same time Celebrex was removed from the NHS approved list and I went through a selection process to find an approved NSAID that worked (Indometacin along with Omeprazole to prevent possible stomach problems).


    I requested a referral to a closer rheumatologist and had my first appointment with the new rheumatologist in August of this year. The rheumatology clinic at the hospital is worlds ahead of the old one and the people on the team actually listen to me. The rheumatologist took note of the cold hands, now also turning blue, and added the diagnosis of Raynaud’s. I told him of my web research and suggested the possibility of scleroderma. He took note of it and ran a complete panel of blood tests. He requested an MRI based on the thickening skin on the sides of my lower legs, which were feeling cold and numb and had lost their hair. He believes this is a result of lumbar discs pressing on nerves. We also talked about the problems I have been having with swallowing, reflux, sluggish bowels and abdominal pains. I had new x-rays, which showed some narrowing of joint spaces and osteopoenia, but no synovial erosion. The latest diagnosis is inflammatory arthritis, osteoarthritis of hips and knees (I have had this for twenty years), Raynaud’s phenomenon and possible underlying scleroderma, even though the ANA tests were still negative. Still waiting for MRI results.


    Even though I am in some pain most of the time, I am most bothered by the fatigue and malaise. I always look drawn out and tired and used to break into tears for no apparent reason. This has improved since I started taking fluoxetine about a year ago, but I still find myself crying once in a while.


    Ironically, every source I ever read had information about connective tissue disorders at the end of the list of arthritis descriptions, but I never bothered to read further with no apparent SLE symptoms or the obvious signs of CREST. Last summer I picked up an old doctors’ reference on rheumatic diseases published in 1983. For some reason I read the section on scleroderma I had skipped over countless times. I was shocked at how many of the symptoms applied to me. I was also struck with panic as the information was old and gave a much worse prognosis than is currently promised. Since then I have read everything I can get my hands on related to any kind of autoimmune diseases. This forum has provided a wealth of support and information for which I am most grateful.

  17. Hi Peanut and Erin,


    I just started playing with watercolour painting this summer when my husband gave me some paints and watercolour pencils for my birthday. I used to paint in oils many years ago and I can draw, but this is all new. I am finding it hardest to get an arrangement where I can work with the paper and brushes and still sit comfortably. I'm thinking about modifying a portable computer cart as a painting table.

  18. In my old capacity as a manufacturing manager I attended a seminar on office ergonomics and we spent a whole day on carpal tunnel stuff. Surgical treatment is controversial. Some argue that the improvement comes from the enforced long term rest after the surgery. It comes back when abuse of the structure by improper use brings about the same narrowing of the carpal tunnel bringing back the initial symptoms. While some surgery is necessary many consider that it is used too often.


    Splints are not always used properly. The seminar suggested that night splinting was a good idea. The best solution to workplace or home difficulties is in working out the proper ergonomics for each situation. There is no magic right keyboard, right monitor angle, right wrist rest. It is the combination of everything overall. In order to keep the nerves from being pinched, the wrist needs to be kept straight. If swelling occurs, as from too much work or working in bad conditions, it doesn't matter whether your wrist is straight, the nerves will still be pinched.


    Do a search on office ergonomics and carpal tunnel and you will find a variety of suggestions. I have removed the stiff metal part from one of my sets of wrist braces and find it helps when I am typing a lot. I have also found that it helps to have the keyboard completely flat or even slanting downward in the back, so that my hands can stay straight and rest on a wrist support in front of the keyboard. The level of the tabletop is important too, set so the arms can come out straight in front of you. I have the monitor down on the table, a few inches behind the keyboard angled so I can look down at both.


    When I use my laptop, my wrists rest on the warm part in front. I am actually doing better with the little laptop keyboard (propped on my knees on a tray) than my ergonomic keyboard.

  19. just noticed this down here on the list with no responses. I am pretty sure I read some of your comments on the other board, so I feel like I know you a little even though I never got around to posting over there.


    I am sorry you are not feeling very well at the moment. With your long list of personal problems, it is so thoughtful for you to be wishing everyone strength, laughter and love. Without those things, it would be hard enough to cope even in much better circumstances.

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