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jefa

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Posts posted by jefa


  1. Hey, Paul, it is so good to hear from significant others who are so supportive of their partners' conditions. There are several other people on the forum who are in the same boat and I congratulate all of you for caring. One thing you mention is your struggle with whether she needs to cry or be strong--the answer is, of course, yes. Sometimes we need to cry AND sometimes we need to be strong. The key in supporting effectively is that she is the one who gets to decide. Be there for her. And I am sure you will be.


  2. Good luck with your tests tomorrow. I am going to have my first endoscopy in about two hours from now. I hardly slept at all last night worrying about it, but I know it won't be long now and I do hope something useful will come of it. Luckily I have no colonoscopy to worry about at this point. I don't intend to be sedated for my procedure, but I can say if I had to have both, I'd probably go for sedation.


  3. I am so glad you made it through the worst of it and can now concentrate on resting up and watching all the good things happen. It is so cool of you to share this with everyone. Hugs when you are ready!


  4. I went to a breathing clinic about 15 years ago and they showed us how to change our breathing habits. One of the things taught was to exhale completely, then don't inhale before trying to breathe out one more time. By this time you may feel a bit faint and you will have no trouble doing a deep inhale through your nose with your mouth closed. Most people don't breathe properly and use only the top 30% of their alveoli capacity. By doing this exercise regularly, you learn to clear out more of the stale air which in turn allows you to take in more fresh air. Other things touched on in the class were posture and exercise.


  5. I am officially retiring effective 16 March, though I haven't actually been at work for the last two years. Prior to that, I found I was able to continue work while I was ill for another two years by reducing my total hours. The occupational health people recommended that I take Wednesday's off, breaking up my work week since fatigue was the main reason I found it difficult to work. They also suggested working at home. My employers were not willing to make those particular changes. They would have looked at a job share situation but we couldn't find anyone to take the odd other hours. There are elements of many jobs that many of you could easily do, but there are so many variable factors, it is impossible to say this job is something a sclero sufferer could handle. If you are lucky enough to be able to reduce your hours, work from home or enjoy a very flexible working relationship with an employer, that's great. My employers were reasonable flexible with my schedule and providing ergonomic keyboards, reseating away from air conditioner vents, hands free phone gear. I have been able to raise a fair amount of money selling things through online auctions. I got tired of having to take the things to the post office, though.


  6. I am afraid I have no information on the risks of the procedure while taking Cellcept, but I do think you should follow through with the biopsy. I would, anyway. Anything that is causing such unusual symptoms could be dangerous to ignore. I found evidence of a malignant endometrial tumour that was fortunately of a slow growing type. Had it been a quicker type, it would have progressed to a higher stage before my hysterectomy. I had endometriosis and other related less scary problems, but I would not put it off. Have you asked about ultrasound as a diagnostic tool in this situation?


  7. It is so encouraging to hear such thoroughly documented and positive experience with a public health system as I am also dependent on similar resources. As the others have mentioned, it is obvious that a big factor in a good outcome is having close support from family members. I am so sorry Aadhaar must go through this, but he is lucky to have you as a partner and friend. You and Aadhaar are lucky to have each other. And we as forum members are lucky to have you share your experiences.

     

    hugs,

     

    jefa


  8. Hi Barefut,

     

    I was just thinking the other day about the first posts of yours I had read on the old forum and how low you seemed at the time. I was noticing how long it has been since that time and how positive your posts had become since then. Of course it is not the sort of thing you would call to someone's attention, fearing that it might jinx things! Anyway, it is not unusual for us to have our ups and downs, even when your physical symptoms may be improving. At least you have this forum to come to. It is good that your ex-to-be is being more supportive -- take your friends wherever you can find them.

     

    I don't say much, but I do read the posts in this forum daily and always find that you have something interesting and worthwhile to add. Hope you are feeling a bit better now.

     

    hugs,

     

    jefa


  9. As always, your positive attitude is an inspiration to us all. I got shivers reading about your close call, Janey, and I am delighted that you came out on top in this very scary experience. I have missed seeing your name on the boards and sent you a pm a week or so ago to say that, but no response left me feeling a bit worried. Then Shelley said something about lost emails to staff and I thought maybe that was the problem and that you were on holiday or something. Some holiday, right? Anyway, glad you are on the mend and please take it easy getting back up to speed -- you don't need to have a relapse. So good to see you back.


  10. It does seem at times that there are ego problems between the general practitioner and the rheumatologist. When I first started seeing my current general practitioner, I was upset with him for a number of reasons, but after sticking with him for a little while I learned that he had my best interests at heart. He was very cautious about the Plaquenil my first rheumatologist wanted me to take, given that I had some unresolved eye issues (monocular diplopia). The first rheumatologist had a rather cavalier attitude about the risks involved. The general practitioner insisted I have a baseline eyetest before he would prescribe it and when I started having some strange visual manifestations, insisted that I stop taking it. It wasn't doing anything at all to stop the symptoms of inflammatory arthritis. Scleroderma didn't come into the discussions until I started seeing the second rheumatologist (who seems much better than the first). Now, however, the general practitioner seems to be treating his opinions with much more respect than the first one. At my last appointment, he was spouting new data that he had obviously just studied up on since my last appointment. Nice when they can work together with you.


  11. I have a mug of 'tools' sitting next to my living room chair and in my office. In it I keep a number of objects which have become useful to me since I have lost finer control of my finger tips: a craft knife, long handled heavy duty nail scissors, finer scissors, a pair of tweezers, fat pens and pencils, a clothes pin, emory boards, an orange peeler (handy for lots of prying) and a piece of wooden dowel (from my bird cage). We call the dowel my 'fing-longer' after an invention by the professor on the tv show, Futurama. I use it when I need to push something that needs more force than my finger alone can bear. In the kitchen I find I am using the shears on my knife block quite frequently for opening packages. I have also learned that using the various knife shapes and sizes really does make quite a difference in leverage and ease of cutting and chopping.

     

    I love to cook but hate the washing up after, so I have been cooking much larger quantities and freezing the remainder in meal size portions. I use my crockpot about once a week. It is quite easy to wash but it is heavy so hubby does it. It is nice knowing that in short notice I have a selection of meals already prepared and a big help on days when I am tired. I also bought a huge stack of cheap paper plates which we use for things like toast and sandwiches. I like to eat my dinner off real plates. I keep a small basin filled with water and silverware goes in it after use. This presoaking makes the washing easier. I generally wash dishes in several sessions through the day rather than in one big load. Keeping them done up is less tiring.

     

    I would be lost without my non-stick wok which I use for many more things than stir frying. We also got a ceramic stovetop which is MUCH easier to clean than the old one.


  12. It seems we all know the struggle of balancing the effects of diet and drug or condition induced diarrhea and/or constipation. You have all made some good suggestions. I have found that it is also important to drink lots of water through the day. No matter how hard we work at keeping things 'flowing' there are inevitably those times when things get a bit rocky. Anal fissures are one possible problem and some of us find hemorrhoids thrown into the mix. Not to be too graphic, I keep a box of disposable gloves and a tube of lubricant near the toilet. Sometimes a little gentle prompting will get the ball rolling in a way which will allow for evacuation without tearing the flesh. Another trick is to rock gently forward and back to aid in the movelment through the colon. I also keep a tube of an herbal gel handy to sooth the hemorrhoids and act as a mild antiseptic to the tissues. It is important to keep the area clean and dry. Mothers among you will remember the perianal wash technique taught in the hospital to cleanse and keep stitches clean. The same technique is useful for daily cleanliness.

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