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Everything posted by Sheryl

  1. Sheryl


    Did I hear my name? Welcome to our Forums Chris. "Doom and Gloom" I am the Doom not sure whom might be the Gloom. Many of us with Scleroderma do try to find a Rheumatologist that specializes in Scleroderma. So, if you get a chance to ask around before making an appointment with just any rheumatologist that would be a good idea. Many doctor's still don't know about all the treatments available to those of us with this intriguing illness. Keep researching and asking questions as often as possible to educate yourself and become more familiar with this disease.
  2. Sheryl


    Labratory, Welcome to this wonderful forum. Several people in our group have the fuzzy thinking and thought process feels dulled and they can't come up with the right words or think quickly anymore. Medication could be the cause of many of those symptoms. Others will respond when time allows. This is a busy weekend for many. Search around the medical section of the forum and learn and ask whatever questions that you need clarified or more details on, from others with those type conditions.
  3. Sheryl

    Burning behind eyes

    Summer your optometrist should be able to tell if you have dry eyes. First he might put on a tiny piece of special paper to see how much moisture it collects in a specified amount of time. He could prescribe eye drops for you also. He could do other tests also at that time. There are many over the counter natural moisture styled eye drops also that your local pharmacist could recommend for you. I used prescribed eye drops and over the counter drops for about two years. When I went into remission of sorts my eyes started getting better also. Now, I just use drops one or two times a week for precautionary measures. Get your appointment scheduled and make your eyes and your face feel better so you can look better and have one more thing taken care of. Let us know what you learn.
  4. Sam, sorry to hear that your home suffered some of the damages of the tornado that went South of us directly towards your place. Our kids bought us a small weather station and it lets us know when something is going on weather wise that we need to watch out for. I sure hope your disability goes through. Seven years back pay with your lawyer getting a big sum of that. But, at least hopefully you will have better medical coverage and a bit of compensation to boot. Keep in touch.
  5. Sheryl

    Six minute walk test

    Miocean, it might be good to keep your oxygen machine in case you have high humidity days or feel short of breath on any one given day here or there. My mother uses her O2 about 4 nights a month and a couple days for a few hours when she feels week or fatigued. As long as it isn't costing you anything to keep it you might just want to hang on to it. Keep us up to date on your new PFT's when you get your final results.
  6. Sheryl


    nolaboo, I hope your you can talk freely with these three new doctors and they help you in the best of ways to manage this illness. Hopefully, things will be brighter soon and you will be feeling better. It is hard when you are constantly having to use new doctors that don't understand your case. I hope you are still seeing the Dermatologist that diagnosed you. He can help you with some of the skin issues that many of us deal with.
  7. Sheryl


    Sherrytrifle, you can click on anyone's pictures on the left of a post. It will take you to that person's set information. Go to Contact Information and click on where it says to email this person. Send them a personal message and they can email you back without the information showing up on the forum postings. It is pretty easy once you know what to do. Finding your way around can be a bit daunting at times. I do love to garden also. I plant vegetables and herbs in will all my regular flowers. Food sources are planted all around the house and down by the lake. Some of my stuff escapes the deer and rabbits and other critters. I do try to plant enough to share equally but sometimes the animals take nibbles off of to many things, so I have to put wire cages around. My neighbors don't complain because they can have a share also. My grand kids love to watch the wee tiny grapes forming. Each time they come that is one of the first things they check out. They do love homemade jams and jellies that they often get to help me make. Deb 1 Million, it is great you have a husband that spoils you will good cooking. Oh to have a man that knew where to even find a can opener. Ha! He knows where the peanut butter and silverware are located. Other than that if he is hungry he has a car or can dial for food. He can build a bedroom set or a house but wants to stay clear of a kitchen unless the aroma's draw him in. I hope you have great weather this year to enjoy your garden growing. They do take love and proper care but the rewards are many.
  8. Sheryl

    Locked Out

    Start jumping Barbara. Great to hear from you, once again. You haven't forgotten us after all. Start giving us the scoop. We are all ears my friend.
  9. Sheryl

    Heart MRI & catheter results...myocardial fibrosis!

    Amanda, I hope the news keeps getting better and better each step of the way. Even after the surgery that you feel better and function better than you have been. Keep us up to date as you always do with any news.
  10. Sheryl

    Pain in thumb

    Summer, it sure wouldn't hurt to have it looked at. It could be anything from a ganglion cyst, to calcinosis or just a calcium deposit of some sort. If it is painful then something isn't right so have it checked out and let us know the outcome of your doctor's visit.
  11. Sheryl

    Is this a coincidence or not??

    Summer, I am happy to hear that something is finally helping you. Sometimes certain medications have different effects on people. If indeed the Nexium was causing problems then after a few months if you are still doing well without it then that is wonderful. Sometimes our bodies just go off strike and things seem to start working normally by any type of change. If the over the counter liquid is working for you that is great news. Plus it is so much cheaper than Nexium. Keep us informed on your well being after a couple more months without the Nexium.
  12. Sheryl

    Male-only Systemic Lupus (SLE)

    Margaret, do any of your sisters have sons? Do any of them have any autoimmune diseases at this time? Your one brother who has a son is he is perfect health? All these girls in the family do they have any symptoms of autoimmune disease? Many may still be quite young and one never knows sometime until years down the road. As you write over the years we will learn much from each other and our many different family relatives who have differing symptoms. One of my nephews was just diagnosis with Addison's disease. Adrenal problems are causing problems with his young body. I guess somewhere in our gene factory things are just getting distorted and there is no stopping what will develop years and generations down the road. Medically speaking it could be a nightmare. Though modern science in the future who knows what medical discoveries will take place.
  13. Sheryl

    Pain in thumb

    No real clues on your situation Summer. You could possibly try taking a portion of a styrofoam coffee cup and wrapping it around an ice cube. I use the styrofoam to protect the fingers on my other hand. Using the ice just on that small area might take some of the swelling and inflammation down. You could have been bitten while you slept. It sure seems like we do get so many strange quirky things that happen to us. You could also put on some simple antibiotic ointment just in case that might help, or an ointment that provides heat or coldness, and don't continue to play or mess with it afterwards. Otherwise keep an eye on it for a few days and see if anything else develops. Remember we aren't doctors we can only offer suggestions that may or may not even begin to help. Let us know if you find out what caused it or how you ended up getting rid of it. Everything we learn from each other, helps us to help others.
  14. Sheryl

    Hugs that can hurt?

    annkd, I had a cousin that was in a similar situation. She wore pretty gloves on her hands. She would sort of put her hands out in front to ward others a bit away. She then put her hands down at her side or sort of wrapped them around herself or crossed and under her armpits. She did have a few of us run interference for her. She would say a few kind words though most knew of her medical condition so just gave condolences and asked about her health. Then she would explain that she was in tremendous pain and just barely functioning. Everyone seemed to understand. We do need our body guards to protect us but if you get caught and someone starts to give that hug all you can do is say oh please be very careful with this hug. The love of these hugs are very painful just now. Or something similar. So sorry to hear of your painful flair and your Mothers demise.
  15. Sheryl

    Loss of voice

    Thanks Vee, for telling your story. I am sure there are many people that feel nothing can be done. Others that are afraid of this procedure, though by hearing someone's story it may change their life. This forum is about getting proper information out to others. This information can help people way the pros and cons of their individual situation's. Red there are many things that can be done to change the course of this disease in your body. Your bowel issues can hopefully get rectified soon also with the proper treatments. You have to be very honest with your doctor's about what is happening so that the proper prescriptions can straighten out what is going on.
  16. Sheryl

    ISN Site Vacation

    We lost power around 9 am yesterday. I was able to be on for a short while. Then of course we lost the internet service so I couldn't visit. Our power came back on at 11 and I tried to get on our website and then checked other sites and realized Sclero Forums must be working while I get to rest. I did check a couple times but the storms going on here I didn't what to risk my computer so I enjoyed going through all my medical bills and organizing all my must keep paperwork. Then, we went to bed early since we didn't want to risk losing our TV because of the storms. I am happy you decided to make our vacation short.
  17. Sheryl

    Farewell lovely Scandinavian Cruise

    Vanessa, so sorry to hear that you aren't able to take the cruise that you were so looking forward to. The cost of insurance for these trips are quite high but now I am seeing how very important it is to have it. Especially for people with conditions that can flare easily. I hope you can find a few things locally to enjoy with your friend. I can't help you with the Cellcept question, though hopefully others have experienced what you are going through.
  18. Sheryl

    Neuro Surgeon Appointment

    Buttons, sorry to hear your complication are adding up. I don't know about the spine and introducing radio active dye into our bodies. It sure tells the doctors what they need to know but down the rode what has it done to us. Hopefully, after years of studies on people and the effects of dyes introduced into our systems it doesn't seem to have any severe effects on us. ( Hopefully) The ankles and stiffness in them is something I have been dealing with. I have many exercises that are loosening the tendon in the back of the heels and the large tendon under the bottom of our feet I have to hand manipulate while trying to pull my toes towards the ankles. I will be seeing a specialist soon and might be able to give more information. The ex-rays did show I had spurs on my heels. This stiffness can make walking and flexing of the feet quite difficult at times. When you feet don't automatically do what is expected of them it can put you in a state of uncertainty. Things are suppose to work automatically, we shouldn't have to consider what moves they should make. Let us know what results you get from this procedure you will be having.
  19. Sheryl

    What are the symptoms of Biliary Cirrhosis?

    I'm happy to hear that a reduction of medication helped bring your liver enzymes back to normal. One always likes the thought of taking lower doses or stopping and particular drug. Joelf, and enjoytheride, keep us informed on your health.
  20. JudyT, excellent news for you and I'm sure your husband is pleased despite his own bad news. I hope you stay feeling better each and every day and your husband is back in remission soon.
  21. Sheryl

    Pressure and pain in ribs and chest

    Kiwimum02, sorry to hear about the problems you are having. Have your doctor's mentioned anything about Costochondritis. Some of your symptoms sure sound like it could be a possibility. You might want to check into this condition when you have time. I sure hope you start feeling better soon.
  22. Sheryl


    Happy Birthday Gareth. I hope you have a fun filled day. Margaret give Gareth this message(s) Enjoy your thoughts of the day you had Gareth, Margaret. All the joy and excitement.
  23. Sheryl

    Gareth update

    Margaret it is always so great to hear how staying on top of Gareth's health really helped him go through each phase of his disease smoothly. You are a great mom and I wish you a Happy Mother's Day also. Do tell Gareth Happy Birthday from all of us here on ISN.
  24. Sheryl

    Hi everyone-New here

    Lindsey, welcome to ISN forums. It sounds like you have all the proper tests scheduled. We look forward to learning more about you and how you are feeling. One of our staff will give you a better welcome than I, as I am just heading out the door and don't have a thoughtful response to make this morning. I'm still not awake and alert. I haven't even finished my first cup of coffee.
  25. Sheryl

    Reglan- Is it safe?

    AngelSky, I have taken Reglan for about 51/2 years. I stopped taking it almost 6 months ago. I didn't have any issues until the last year. Then I was getting this tightness in my jaw and the urge to stretch my mouth quite often. Then my jaw would start to stretch automatically. Then I would swallow my saliva and my jaw would clamp down on my teeth and if my tongue was in the way it was chomped on. It was a quick uncontrollable bite, and usually my tongue was in the way then it would take weeks for my tongue to heal. So my doctor's decided to take me off of Reglan for awhile to see how I do. I still have the problem but it is not happening near as often. I am hoping that it will stop completely soon. My doctor's have kept a close eye out for any thing that might happen the entire time I have been on Reglan. I had more problems with Cholestrol medication than anything I have ever taken. So, we don't know how a medication will work for us until we try it and watch for signs that something isn't right. I still take my Nexium that I was taking in conjunction with the Reglan. So far the Nexium is working and I haven't had to try any other medications. When you are having stomach pain, throat pain, esophageal pain you will want to take just about anything. That is why the Reglan was prescribed for me and it worked for me. Medications come with so many warnings that have to be noted if even one person for instance had a heart attack while taking the medication it would have to be listed. That person could have had a heart attack without taking the medication. We will never know. But, the label will have to give all the precautions just in case. Would I take the medication again if I was in the pain I was in the past several years then my answer for myself would be yes. You know how you feel. I hope this might help you out a little bit without confusing you further.