Sheryl

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Everything posted by Sheryl

  1. Irene, I also was too tired to figure out what was happening. I surmised it might be that there could be condensation in the tubing. But, the tapping wasn't consistant. Of course I was awake and moving about and breathing erraticly. I am glad it happened there the first time so that I now know what to do. Oh, anyone going for a sleep study make sure to ask about the humidity appliance that attaches to the machine. Insurance companies no longer automatically offer that part. Saves them a bunch of money. I was talking to the technician and saying I would really like the moisture because of asthma and breathing problems. She said if she doesn't word things properly on the orders she sends to be read I won't get the humidifier. So we talked about it and she let me use the moisture the entire night. Sooooooooo nice. My insurance company may try to get out of it. We shall see. I am off to visit my gastroenterologist this morning for my annual / bi-annual appointment. He will be happy. No major problems going on at the moment. It's all good. I hope. Sheryl
  2. I too love popcorn. It is one of my favorite snacks. My gastro doctor said only two handfulls once a week if I really have to have it. Any more than that and the diverticulosis acts up. My guts hurt anyway but I sure like it. I pay the price usually. I need to only have it once or twice a month. Maybe, I need to just bite off the ball parts. I use to do that for my kids when they were little. So they wouldn't choke on the hulls or hard tacks. I guess we just have to cope with all our losses. Sheryl
  3. Ahh! A bed of nails. Which friend is going to bail me out and who is sitting beside me. I think I might definately need it. Hey, the last time Ron and I had this discussion he was afraid of me cutting his hair. He is keeping a low profile. He puts in his 2 cents and then meanders away. I saunter getting ready for the next query. I told him a long time ago. It was his job to earn the living and I would make his life worth living. We are both retired. Or at least he is. I still have a house to maintain and meals to prepare. A womens work is never done. I can also make his living quite misserable. (Grin) Enough of him. I will do what I need to do if I have to go back to work. Humm! Now, hairstyling (Snip/slash) or demolishing. Or Pharmacy as in drugs. What a way to go. Officer I was on a Sclero drunk and still am if you watch me walk that line. I don't know what happened to that man. You say he was my husband. OK! All for now. Thanks for all you concern. I am a surviver. 38 years worth in July. I guess we have learned to ignore things we can't control. Sheryl
  4. I am home from the sleep study. I used a C-Pap machine with first the pillow nose piece which was ok. I could hear the loud pushing of air into the nose piese and it sounded like someone breathing hard into my ears. About 2 am I awoke to the sound of loud tapping. I thought the technician was doing something so I waited about 5 minutes and it was really bothering me. So I asked out loud if they were doing something because the thing was so noisy. She came in to check and there was condensation inside the tubing and it was dripping every time I was breathing in or out a drop would fall into the tube. The humidity was set to high. So, they changed the tubing and I tried the regular nose piece mask for the rest of the night. I slept much better after that. You can't hear yourself breathing in that one. It is much quiter. Anyways, I guess the results will go to my doctor once again and they will call in an order for the machine so I should hear something from someone in the next two weeks. I liked having the humidifer for moisture as part of the system. I think the tech said the machine was set at 6 most of the night. Thanks for asking about me. My husband asked me how I slept last night. I said. pretty good the last half and was going to tell him what happened. He just said, yeah right. So, I poured myself a cup of coffee and walked away. Came on my computer and, here I sit. That's my exciting news for today. I almost hope he decides to sleep in another room like he at first said he planned to do if I got this contraption. I think when he said that he forgot that the only tv's we have in the house are the one in the bedroom that I will remain in and the one in the kitchen. Ha! I will let you know how the saga ends. ( Smiles ) ( Grins)
  5. Welcome aboard Joel, We need all the input of others that have gone through different things. It really does help when trying to explain things to your doctor or knowing ahead of time the products that work best for others. I hope you receive benefits and encouragement through all of us. Sheryl
  6. Erin, here is a toll free number for you to call UofM hospital. Ask them to switch you to the rheumatology (scleroderma) dept. 1.888.229.3065 The number straight to the scheduling dept is 1.734.936.9223 I usually ask to talk to Fran if she is in. Or have her call me back if the wait will be awhile. Good luck. If you choose to try Uof M maybe we can meet sometime and get to know each other. I am hoping to see Vee once again on Thursday. Hope this helps. Sheryl
  7. lovebnmom3, I have on my paper work that if your eGRF estemate, numbers are between 15 and 59 for more that 3 months tha it would be classified as chronic kidney disease. ( stage 3 or 4 ) I don't have a comparison report. I had all my bloodwork done a couple weeks ago. But, I can't afford going to see the doctors every 4 months. So while I am doing well I go every 6 months. If there is a problem they will call me over the phone. I don't see anything on my report for a BUN so I can't help you on that one. My report just has Sedi rates and Creatine and a bunch with Highs and Lows written after it. I will know more when I get another copy in the Fall if something were to be going on. Sheryl
  8. Hi Erin, I waited 6 months to see my scleroderma doctor then since my case looked like only limited I was given to his partner, Dr. Elena Schiopu. The wait to get in to see her is anywhere from 4 to 8 weeks. I am very happy with her. If you have other problems there is a whole team of doctors that see you. I told Vee about the scleroderma experts and she also now goes to U of M she has more physical problems than I so she has seen more of the team. She also still goes to her regular rheumatologist because she has been with him quite some time helps her to decide which road she wants to follow when they have different ideas. Just so that you know. All my scleroderma tests have always come back negative. Maybe because I have never been in a major flare. So if the disease is really active at the time of a visit maybe that is when the SCL70 shows positive. Sheryl
  9. Jennifer, thanks for letting us know whats going on. Did you sleep the entire night with the oxygen on? Is that why your level was around 92. Isn't the magic number suppose to be above 94 even while you are sleeping? Are you getting the results of your PFT's tomorrow or going for the test? Sheryl
  10. My sister has an IV port. It was installed about 15 years ago. Nothing was ever mentioned about removing it. I have had IV's in my foot and in my neck. They either blow the veins or the IV solution starts going elsewhere. Now, that is painful for weeks afterwards. I think I would choose a permanant IV port. Now, you have to drink the wonderful liquid refreshment all over again? Yuck. Maybe, they should have tried your foot or neck. I also only have them use the green colored butterfly needle system. Usually used on Children. That's my speck of input. Sheryl
  11. It is amazing how you can tell your friends anything and they don't condemn you or judge you when you explain things. But. you are afraid to tell things to the one you love because they are the first to condemn or just or use it against you in the future. Friends don't do that. Some would say its because they don't care as much in the first place. But, I would rather talk to my friends about anything than with family members. Strange how life works. Thanks everyone for all your replies of love and understanding. Since we all take so many pills to rectify specific problems my husband doesn't have a clue what is going on. EXCEPT, I look normal so I must be OK I am anxious to see if the quality of my sleep is improved. 3 years of terrible sleep patterns was enough to make me do something. I am starting to get excited. It might not take all the fatigue away, but it might help some. I'll let you all know which I should know by Wednesday morning. I'm so exicted. (song) Back to reading posts. Sheryl
  12. Domperidone was to be my last resort for help. My doctor wanted me on it but said I could try Colestid. It has been working for the last 2 years so I haven't needed to switch. My doctor has a Canadian and American License so he can prescribe drugs from both countries. So to answer your question. If your doctor can write a script he is suppose to have a Canadian License. But, I believe now that I think on it. He can write a script without a license but then you may have to make an apointment with a Canadian doctor for confirmation before a drugest is supposed to fill it. Anyway, Colestid has helped much more than the other things I have tried in the past. Read up on that one and see if you think it might work for you. I also take the Nexium and Reglan 4 times daily for esophagus problems. Also other prescribed medications. Have you had your thyroid checked. The starting of my thyroid problems was horseness and voice pitch changes. My voice went really deep for awhile. Just a thought. Sheryl
  13. Jennifer, I am also glad it is just the pulse oximeter also. I was immagining the 25 wires up and down your legs and into your scalp. Guess you won't be laughing about that. Sweet Dreams. Sheryl
  14. Jennifer, your husband is going to be in stitches when he sees you all wired up tonight. You can have some good laughs together. I bet it is just policy that your doctor needed this test done. Maybe every so many years. My mom has been on night time oxygen for about 2 years and hasn't had to redo any tests. In fact she never even took a sleep apnea test. Her pulmonary doctor just prescribed her to be on 2 percent oxygen. Her levels drop while she is doing the hall walks. My oxygen doesn't change when I walk. I wish they did one with stairs. I would be gasping for air after the first time down and back up. I am doing well today. I am keeping my tension levels at bay. I never used to get tense or upset about very much. Now, I can't seem to handle the least bit amount of stress put on me. My nerves must need a break. Ha! I have been getting a bit testy of late. Don't know what is causing it. I haven't been doing alot of late. Not because I can't, but because I just don't want to. I am afraid I got use to lounging around alot in Florida, and my get up and go fled. Can't seem to catch up to it. We are on different paths. I'll think of you tonight and I will get another turn next Tuesday. Sheryl
  15. Jennifer, do you always use your oxygen at night? If you do the study at home will you have to do without the oxygen for part of the night? Good luck with your sleep study. Keep us informed. Sheryl
  16. All our special thoughts, and vibes did wonders. Dave we were all giving you what we could from a distance. Glad that it wasn't as serious as we surmised. Keep on getting better and better every day and know that we are all wishing a complete recovery for you. Thanks for letting us know you are reading our written word. Sheryl
  17. Hi Pamela, No my husband doesn't go with me to apointments. He went the first time for a confirmation that I did indeed have Scleroderma. He sat out in the lobby and didn't even bother to come in with me to meet the Doctor or hear what she had to say. I did try to get him to come in. He just decided to sit so that is why I don't give him any information unless he asks me point blank about something. I had to tell him about going back in for the overnite stay. I just had to time it right. I sure am glad I didn't get the packet of information until after I told him the price of my Dentist apt. When I worked I took care of things and paid for things and he was never the wiser about most things. Now, being retired he sees everything that comes in or out of the house. Oh Boy! He asked for a hair cut most bashfully last night. And even said, " you won't slit my throat will you". Guess he was a bit worried I hate some very hateful feelings. All is well for now. Sheryl
  18. Well, my husband popped his cork. I let him rant and rave and tell me I was a hypocondriac. I just stood there. When he was done he walked away and about an hour later he came back to say that I could do what needed to be done. I just turned around and said, "you're absolutely right I will do what needs to be done". I can't believe it. I didn't let him get the best of me. I just let him rant and afterwards I had a feeling like I have to be strong and help myself. I can't depend on him to do whats right for me. Now, or in the future. I now know how Jennifer felt when her new husband said what he did. It takes awhile to push aside the heartfelt verbal slamming. I still can't believe he stood in front of me and said that I was fine and the doctors were wrong, there is nothing wrong with you. You just don't appear to be sick. I guess I will have to stop laughing things off and hiding my inhalers and most of my medicines. Oh, thats another complaint of his. I take too many medicines and that is what is most likely causing other ailments. Ha! That is why I tell him as little as possible. As long as I can handle this disease and others by myself I plan to continue to do so. No more ranting from me. Thanks though for reading and listening to me. Sheryl
  19. Karen, I am sorry for your loss. Glad though that you decided to come back and join us. Hopefully, some of our words will give you the needed strength you need each day to pick up the pieces and enjoy everything around you that was your mothers. Special moments or gifts to each other throughout the years. Sheryl
  20. It's me again. I received information in the mail today. Looks like I do have to go and spend another night at the sleep lab. I didn't realize I would do another overnighter. This time using the C Pap machine and testing to see what pressure I will be needing. I go on the 24th of April. Wonder if I will go home with a machine the next day. I called the sleep center on Monday. They said my doctor had to call them. They didn't have the machines. I waited until today with no word from anyone. So, I called the hospital back to see if my doctor did anything about the situation. Haven't heard from them. But, I went to my mailbox and I received the packet with my show up sleepover date. Strange, that the one hand didn't know what to do with the other. This time I won't leave the sleep study center without at least knowing the next step. I will have to discuss this with my husband. He is going to blow his top. He thinks all of this is a bunch of hogwash. And it is spending alot of our money. That is the hardest part for me. A part time job may be in my future. We didn't plan all these medical expenses when we retired. I went to the dentist yesterday and he negelected to tell me I used my allowance for the year already. I had to pay 300.00 dollars for a teeny filling. I could have waited until next year, it wasn't even that bad. It was a tooth next to my front teeth so I guess a white filling is expensive. Yikes! It's not my fault. In the future I will check everything before having services preformed. Anyways, that is why I am afraid to say anything about my sleepover. Sheryl
  21. Kamlesh. My Dentist said that the thickening in the tongue and the feeling of your tongue being painful as if bitten is part of shrinkage of the mouth and jaw. It can be a long process or a quick process. It can start and stop and never happen again. I have had that feeling of not being able to stick my tongue out as far and that the right side of my tongue is thicker than the left for several days at a time. Then it goes away for a couple months to return. There is slight pain. And you can't seem to make it lay down so you can swallow properly. Is this what you are talking about? Sheryl
  22. When I had sores in my mouth the Dentist prescribed Acyclovir 400mg. It worked great for me. I also use over the counter glycol and swish and gargle with it. Haven't had them return and its been over a year. Good Luck Sheryl
  23. I am finally getting a reprieve from the extream fatigue. It seems it truly comes and goes with me. I had it for about 4 months. Then completely gone. Then I got the severe itches (rip roaring) my arms, hands and wrists. I can tell the skin is a bit thicker feeling. Then after several months it stopped. About October. Then the extreme tiredness started up again. It was gone just before holiday. I still get slightly tired and sometimes take a nap. I still can't stay awake in the car when my hubby is driving. I have had 4 months of almost painfree carefree days. In the back of my mind I am enjoying this. But, I'm getting myself prepared for the next turn of events. It usually doesn't last long. I am enjoying this quality peroid of time while it lasts. I think that Sunshine and Florida's warm weather really gave me the lift I needed. I am marking this in my book. Keeping track of the time frames that things are happening. Well, I am off to start my dressing and peel potatoes and all the lovely things a parent does when her children come for a visit. Ron and I will enjoy are day with our youngest son and his girlfriend. My oldest sons and families are either staying home or traveling to Florida to be with their wives familes. A quiet day for me. Sheryl
  24. Irene and Laura, Thanks for the information. I guess I will learn more when I go for my next visit. Will, I have to stay over night again so they can check the pressure on the machine and see what type I need. Just by your letters I would definately want a warm moist air bursting down on my face and in my nose than something cold. If my room is the least bit cold my nose gets cold and I am like a leaky faucet. I sleep with a mouth guard. I do have to open and stretch my mouth every couple of hours. Does the nose one push in enough forcefull air to keep that flap in the back of the throat from flapping closed. I was thinking of going with oxygen and the cannula if I could. My sisiter said if my flap keeps closing and stays closed from 10 to 14 seconds all night long that I need the burst of air that keeps the flap open. I won't even get the opportunity to have a choice. I guess, I will have to take what ever my insurance offers. Choices Choices choices? Happy Holiday Everyone, Sheryl
  25. Laura, Is the burst of air that is shot into the mask cooling to the face. With your own inhaling and exhaling into the mask doesn't moisture set up inside the mask and make your face cool? I am wondering if I can ask for the cannula and go for just the oxygen. That machine makes its own oxygen. It might even be cheaper than the C Pap machine. I think I might like having the quiet effect of putting the oxygen machine in another room and running a long hose into my room. Less noise. I can't even stand the noise of the frogs outside mating in the spring. I have to wear ear plugs. I am noise intolerent. I even keep the sound off on my computer. The absense of noise is wonderful. I bet when I see the people at the sleep center they will say I have to make another apointment with a pulmonary doctor if I want the oxygen verses the C Pap machine. If nothing gets rid of the fatigue I guess I would rather use nothing and continue as I have. Catching sleep as it comes. I knock down solid sleep in the middle of the afternoon for 2 hours is more restfull than 7 hours tossing and turning in bed all night. Well, I have something else to ponder on. Janey, I do like your answer. It gives me a second option. Thanks for responding. Sheryl