Jump to content
Sclero Forums

Peggy

Members
  • Content Count

    633
  • Joined

  • Last visited

Everything posted by Peggy

  1. ​WARNING - UNPLEASANT TOPIC The reason I am here is I need to know if anyone else has had this happen because of this disease. Last night I was laying in bed with my husband and pets. All of a sudden without warning I realized that I was "going". I immediately jumped out of bed. I couldn't stop it. My husband ran and got some towels. It was literally pouring out. I finally just tried to use the towels to get to the bathroom. I got in the shower and it still continued. I had NO CONTROL. The sclero has robbed me of what "was" my life. What I can't stand happening is what it does to my husband. Every day he calls me numerous times to see how I am doing. He sees me in pain; he sees me not being able to eat due to horrible nausea and pain whether it's by mouth or by infusion; he sees me so tired all of the time and even has to keep nudging me awake at worship services. But for him to have to clean up after me is just too much. He couldn't change the kids diapers without having to throw up. I feel just terrible for putting him thru this. So now what? Do I dare to go anywhere? Do I keep a diaper on? What kind of life is this to live for me and more importantly for my husband?! I have no motility in my esophagus and no motility in my stomach. I was told it will go thru my digestive system. So is this what happens when it goes thru my intestines? All I know is I am so tired. The last year-and-half it has been one thing after another. But this issue is too much. The "in sickness and health" shouldn't mean this for my husband. I am at such a dark place. Any input would be appreciated.
  2. Amanda, Thank You for the wonderful compliment. My Pastor was over one day for a visit. She asked me if I ever ask "why me"?. I sat there and after some thought I answered her and told her that I had never once thought that. I told her now that she asked this I believe everyone has some burden to bear and this is mine. Thank you for the information on the stomach issue. This is what is so hard for me. Anything I eat orally or with the infusion it is followed by horrible stomach pain, discomfort and nausea. As horrible as this solution sounds at least I now know there is an alternative. Thank you for that information!
  3. I can't thank everyone enough for your advice. I am humbled that I was remembered. The feeling of blockage isn't as constant as it was before. I am going to call the GI team tomorrow and the infusion nurse tomorrow as I agree with you that they should know what is going on and hopefully can give some insight. This holiday weekend was a complete washout for me as I am in so much pain and I am so tired. I have no strength. I still do what I have to but can hardly wait to finish so I can lay down. I continue to battle this part of the disease in my head and in my heart. This forum was my saving grace when I was diagnosed. I have to confess and apologize how needy and constant I was on here with my issues. It has been a very long 6 years and I have learned so much and gone thru so much. I have lost so many friends thru this disease some were expected, but too many were so sudden. This disease can sneak up on you and that revelation has not only opened up my eyes but it also scares me. One thing I have learned is just how similar what this disease involves for us but also how different it can be. The constant theme for a lot of us is the bind or connection we have and how we truly understand and can relate and be there for each other. I am so lucky to have 2 people with this disease only a half hour away. So we talk a lot and meet for lunch every now and then. I began to share my journey on Facebook a while back. I have been so amazed by the outpouring of support. That has been my saving grace in getting thru some very tough times. But what I have been touched by is how many people have asked me to continue. For a lot of them to say I am an inspiration floors me, but I appreciate them saying saying that. I think anyone dealing with long-term health issues has to learn to cope. What is the alternative? Give up?! I don't think so. However it isn't lost on me that I have used up all of my currency so to speak. What I mean by that is I have used every drug there is to use against this disease, except for a stem cell transplant, which isn't an option for me according to my rheumatologist. Once the Cellcept to quits working then the disease will do what it will do. My pulmonary fibrosis is getting worse little by little but there are so many sclero saints who have it so very bad that I know that I have nothing to complain about. Like my mantra says..... IT IS WHAT IT IS
  4. First of all, I have to apologize for not checking in for a long time. But to be brutally honest this disease has been awful for me. I have Systemic Scleroderma and 9 other autoimmune diseases. The last year it has totally wiped out my digestive system; I had a spinal stimulator put in for the horrible pain in my legs and lower back, which even with that in I deal with pain that is so constant and debilitating; I had a really bad cardiac issue that resulted in an ablation of the lower part of my heart; with regard to my digestive system I had gastric bypass as a new trial procedure for my extreme reflux. It was thought to be the answer and it was for 10 months and then the reflux returned. Now I have a feeding tube in because of what has been damaged and continues to be affected. My reflux is one of the worst cases the University of Minnesota doctors have seen. I am on every prescription for it there is and still have heartburn every day multiple times a day. My stomach has been completely been reworked and moved around to where my stomach is the size of a plum. The other portion of my stomach is still there and this is where my feeding infusions go into. So how it is possible that reflux is able to even happen the doctors can't explain. When they did the test to see what is happening the barium went down my esophagus and entered my stomach and immediately backed up the esophagus. No one in the room could believe it. I was like a circus sideshow with all of the medical people watching this. When the reflux gets to where it is so painful and feels like I am being burned alive then I have to take this GI cocktail that is so horrible. If I have to take 3 of them and it still is burning then I have to go to the ER for IV' s. The reason for my post is last night I was awakened at 2:20am with pain and discomfort in my chest / esophagus. It feels like something is stuck in there and it isn't going away. When I swallow even my saliva it feels like it's getting stuck and won't go down. I haven't called my doctor about it as I thought maybe someone else has this. I have no motility in my esophagus or my stomach. I have been told it is continuing to work its way down through my intestines. Is this blocked feeling in my chest a further escalation of the damage to my esophagus? I am concerned that food I eat will become stuck. I really can't go into our local clinic because they aren't equipped to know about this. The team of doctors I have are 3 1/2 hours away so going to see them isn't an easy thing to do. My infusions or feedings aren't going well as I get such terrible nausea. I also forgot to mention that I am malnourished. I am supposed to be doing 2-3 a day but with how I feel after makes it hard. The nausea is so bad that I am laying in a fetal position. They take well over an hour and I have to wait 4 hours in between them. If anyone else can relate to this and can share and give some insight I would so appreciate it. This disease is relentless. I am constantly being told how I am wasting away; It's painful on the number of people don't recognize me; I also get told the phrase we all get to hear......."but you look so good" which so minimizes me in that they may think I'm not really sick . My standard response is "I wish that I felt as good as you say I look". My mantra that I have adopted and live by and wear a bracelet that says..."IT IS WHAT IT IS". Any input will be so appreciated!
  5. On April 26th I had the Gastric Bypass surgery for my reflux. My reflux had gotten so bad that I was having attacks 24/7. I constantly aspirated into my lungs; it was burning my voice box and has changed my voice; I have no motility left in my esophagus or stomach; when I would have an attack it was affecting my heart. When I had these attacks they were like being burned alive in the inside. That is the best description I can give. It is so painful and I would have to drink a lidocaine/malox concoction called a GI cocktail. I would have to repeat these sometimes because the 1st one wouldn't take. If I had drank 3 of them and still being burned then I had to go to the Emergency room and get hooked up to IV's of Protonix, pain killer and nausea medicine. This cocktail was horrible. I would throw up and after drinking them then it meant an entire day of nausea. I did this day and night and night and day. That's how bad it was. It was because my stomach was full of bile as it wasn't emptying and this would back up my esophagus. I had the surgery at the University of Minnesota. I am one of the first to have this there as this surgery is just starting to be tried for reflux. I had 2 surgeons........a Thoracis surgeon and a Bariatric surgeon. They said that my stomach insides were terrible.........all enflamed and swollen. What they did was take a very small part of my stomach (the size of a ping pong ball) and then made the bottom of my esophagus that opens to this little stomach very big at the end. The rest of my stomach which is cut away from the working one is still present and connected to my intestines. I guess it still performs some type of purpose. So now for the rest of my life I am only able to eat about 3 tblsp or maybe up to 1/2 cup of food at a time. I can't drink while I eat as this will fill my stomach so I have to wait to drink. I am not able to gulp liquids anymore either and have to take little sips. If I eat even one spoon too much of food it gets stuck and prevents even saliva from going down and I eventually end up throwing up the overage amount that I ate. I am to also avoid any sugar and no carbonated beverages. This surgery came about very quickly and I wasn't counseled like patients who are having the gastric bypass patients that are obese are. I was scheduled for the surgery and that was it. I was a sugar addict. I was never hungry due to my stomach being full of bile all of the time and my stomach would tell my brain that I was full. So basically lived on sweets, which I ate due to cravings. I know that I went through sugar withdrawal. After the surgery and the 3rd day home from the hospital I had a reflux attack. I was devastated thinking here I went through this drastic life-changing surgery and I still get to suffer with reflux! Well the doctors at the University thought it was just due to things needing to calm down as my stomach was so bad and what they found was one of the worst cases they had seen. Well I can say it is 4 weeks today that I had the surgery and it's been 3 days since I had reflux so maybe they're right. So now I am fighting depression due to the eating situation. To know that I will never be able to pile food on my plate on the holidays like I did before when my eyes were bigger than my stomach. I will never be able to go out to eat as it's a waste of money as I can only eat 3 tblsp. I know this will pass and I just have to shut this thinking down. I just loved to eat though. Even watching TV is hard as its commercial after commercial of food. Watching movies everyone is eating or at a restaurant with a plate of food eating. Our society is basically about eating. I also still crave sugar and candy. I have lost 18 pounds in 25 days. I still have a tube coming out of my stomach that I can put syringes of water into so I don't get dehydrated. I am now seeing the doctor weekly due to the weight coming off so fast. I am 5'7 and weigh 164 pounds and they said I could end up losing 40 to 50 pounds. Well if I lose that much I will look like a skeleton. It's amazing, in that years ago when I was overweight after I had my kids, I thought that if I could have bypass surgery I would lose the weight. I guess be careful what you wish for. Because I'm not eating much I have no stamina at all. I have no energy and it doesn't take much at all to wipe me out. I already was dealing with such horrific fatigue and now with this on top of it I am not able to get much done at all. When I had the surgery and was taken to my room I was in the bariatric ward. They all looked at me thinking why in the world was this woman having bypass surgery?! Some of these poor people were so large and to think they too would now be eating so very little when I'm sure they were probably consuming alot of calories. This disease has so done a number on me. The last year has been so bad and it just doesn't seem to let up. It's one thing after another. I have always had the motto "It is What it Is" and would just work through what was thrown at me. People would comment how they admired me because of how strong I am and my disposition. Well I have come to the point where I just don't feel that strong right now. Enough is enough. I have so many people thinking of me and I am so very grateful. I just wish I was the energizer bunny who was able to push through and do whatever needed to be done. Instead my life has become about being sick and the bad days are outnumbering the good ones. Sorry to ramble on. Hugs to all.
  6. Scleroderma is listed as a "Compassionate Allowance Disease" and because of that her application should be "fast tracked". If her medical records indicate how this disease impacts her daily life and how difficult it is it will make it much easier for approval. Her doctor should document very well in her medical records how the disease is attacking her body. I had quit working in July of 2007 due to being unable to work. I applied for disability in November and was approved right away and received my first check in January of 2008. There is a 6 month waiting period so because I had to quit in July I was able to get benefits right away. The Compassionate Allowance issue was just approved at that time so I had faxed this to the social security rep that helped me with my application. He included this with my application and requested that it be fast tracked and it was! I was and still am so thankful as there is no possible way that I could hold down a job. I was on the road every day as an insurace rep. Now I can't even drive out of town due to the pain meds that I am on and also because of the extreme fatigue I can fall asleep very quickly making driving very dangerous. I hope some of this helps and I wish you and your wife good luck on your application. It is amazing she is able to work and I can't imagine how she suffers every day with the cold.
  7. Well surgery is set for next week. I had another really bad attack last week and really aspirated into my lungs. This then developed into filling my left lung. I also had a pre-surgical physical that ended up with an abnormal EKG. So last Friday I had a stress test/ECHO and it was normal, thank heavens. The reflux attacks are so hard on my lungs and then my heart. After the attack I have lingering nausea from the lidocaine concoction and now I also have this horrible chest pain due to the aspiration. So I am so anxious for this whole mess to come to an end. However I am not going into this surgery blindly though. I have done alot of research online and have been on boards with others who have had it and it sounds like quite a life-changing experience. But as all of us know this whole dang disease Scleroderma is a life-changing experience also. So I hope all goes well and that the surgery will be a great success with no complications. Today I had my 2nd injection into my back. With the x-rays and MRI's I've had done they found that my lower spine and discs are degenerating and I have what the call facet syndrome. So I have the 2nd of an injection into the back of a facet median branch block. Now that these 2 have been done then in a month or so I will have a radiofrequency ablation which is another kind of shot into the back that provides 8 months of no pain. I also have the spinal stimulator in to help with my leg pain. I had that put in May of last year and it has been so wonderful. It is amazing and even with that there are some days that the pain I have actually surpasses what I am able to cover with the stimulator so I can't imagine what kind of pain I'd be in without it. So you can see this good ol' disease has really come on full force on me the last 6+ months and I am so looking forward to having this surgery and maybe enjoy a wonderful summer. I will post as soon as I am able after the surgery. Hugs. Peggy
  8. Well my surgeon said the partial Fundoplication isn't a possibility as it won't work in my case. He has consulted with surgeons out of the country and their advice is the gastric bypass. So the surgery is scheduled for April 26th. I would be fibbing if I didn't have worries about this whole thing. I have done alot of research on it and there is definately good and bad about it. Every time I put something in my mouth I keep thinking it may be the last time I can eat like this or even eat that particular food. I just want the being burned alive to end; the taste of acid in my mouth; the fear of when an attack is going to hit and when one starts running to try and avoid doing the whole GI cocktail as it is such hard stuff to take. I am hoping I can find the chat line on this particular issue that one of you talked about before this surgery to get further insight. If someone knows the link please let me know. Thank you!! Hugs to all!
  9. I wanted to thank you for this information. My husband has been searching for as much information as possible on all of this. I know my family is very concerned but they are even more concerned if I don't do something. My attacks are hitting all of the time and they are so very painful and bad. My aspirating is extremely concerning. Thank you again!! Peggy
  10. I think I am leaning in my mind towards the bypass than I am the partial fundoplication. I got the idea from the nurse that the surgeon is leaning this way also due to the fact that he is concerned about my inability to swallow and really bad nausea if I do the fundoplicaiton. If you could would you please run through for me how this was done? How long were you in the hospital? Time to recover? How do you get your nutrients? How do you take your meds? My stomach will be completely bypassed being it isn't working so I guess I am at a loss on how this will all work. I know about 10 years ago I came across a lady who had this surgery due to her being very obese. Well she lost weight but then it got to the point where she couldn't stop losing the weight and she looked almost skeletel. How are you doing since the surgery? Any information you could provide would be so appreciated. Thank you and hugs to you:) Peggy
  11. I would love to have the support group that I could talk to about this and get some insight. Unfortunately my attacks are all of the time and the last really bad one on Saturday I aspirated so terribly. Even after the attack subsided and the GI cocktail helped the burning I had a new development where my chest hurt so bad it felt like a heart attack. I couldn't or didn't dare to cough as it just coughed up the horrific acid and I was so afraid to have it start all over again. All I could do is sit there upright on the couch at 6am (yes - 6am is when this hit!) and all I could do is just sit there and cry. So I desperately need an answer to this. I am on sucralfate and every other drug there is for this. The poor doctors have tried all of them and it seems as though the disease is just running wild after me. Thank you so much for your input and information!!!! Hugs, Peggy
  12. I have Systemic Sclero and 7 other autoimmune diseases. The last 6-9 months have been horrible. The issue now is I have just a very minute amount of motility in my esophagus and none in my stomach. I have reflux attacks 24/7 and aspirating into my lungs. These attacks are like being burned alive and I use a GI cocktail to try and numb my esophagus and throat. This is a mixture of lidocaine and aluminum/magnesium. After 3 of these and it doesn't work then it is off to the ER for IV's of protonix (pantoprazole), something for the pain, and something for the nausea. What is happening is my stomach isn't working so it fills with bile and this then is like a boiling pot and backs up into the esophagus. My stomach tells my brain it's full so I'm never hungry. The surgeon is considering doing a partial fundoplication where he would wrap part of my stomach around my esophagus. The concern he has with this is my ability to swallow after and also the possibility of a lot of nausea. The other consideration is gastric bypass surgery where they would just bypass my stomach completely. We meet (my family and I) with him the end of this month to discuss the pros and cons and the dangers. One thing my daughter, who is a pharmacist, is how do I take the mountain of prescriptions that I take; and also how does my body absorb nutrients. Has anyone heard of this or had this? Any input would be greatly appreciated. Warm hugs. Peggy
  13. An update for anyone in horrific pain. Please see a Pain Management specialist and ask about the Spinal Neurostimulator. These devices can help with pain for ANYWHERE from the neck down, whether it be the tip of your fingers, or your toes and anywhere in between. I had the final surgery and on 2 occasions have met with the Boston Scientific engineers to change how and where my stimulators work. It is so amazing. The spinal surgeon put in 3 needles and actually tied them to my spine. He also took out a small little piece of my spine to insert the device and the battery running it is in a flap of skin above my right buttock. Well once the surgery is done the engineer sits with a computer and it connects to the device in your back. He then sends different sensations to different parts of your body that you can feel and then you tell them if it is good or bad; if you want it stronger. I have a remote with 5 different named settings that I can go to and each one is a different sensation. One may feel like tingling down my legs and back; one is a pulsating feeling; one is a kneadling type of feeling; etc. I can then turn this sensation up. They also within each of these have a setting for my back and for my legs so I can control those separately in strength. After the initial recovery period you go back to complete normal activity. The only suggestion is that they don't like you to have it on when you are driving as for instance mine goes down my legs and it can be a sensation that may affect your driving. My pain is still bad and I can't imagine where I would be if I didn't have this. Even with this I was in bed all day today with terrible pain in my legs and lower back. To also update on my disease as I haven't been on for quite some time............unfortunately the disease has really gone after me these last 6-9 months. It has gone through my digestive system and I no longer have any motility in my esophagus or stomach. On December 6th I am meeting with the doctors, and I will be finding out after all these tests they have done, if I am a candidate for the fundoplication surgery. If not then I will be looking at soft foods/ pureed foods and eventually a feeding tube. I have been in the hospital for a week after having so many reflux attacks that the GI cocktails that I took were way past the amount you can take so it meant an ER trip and then a long hospital stay. Now the food doesn't move out of my stomach and turns to bile and then starts up a nasty bout of bacterial overgrowth which requires antibiotics. I have this happening constantly which is unsettling on the amount of antibiotics I'm taking. I am aspirating into my lungs which is what is so worriesome to my pulmonologist, rheumy doctor and gastro doctor. I lost a good friend to this disease 2 weeks ago whose disease mirrored mine 6 months ago. In the last 6 months it went through his digestive system and also the aspiration into his lungs gave him pneumonia and he wasn't able to fight that off and passed away. This news was extremely upsetting not only to me but to my poor husband. So I hope that some of this information is of help to someone. I wish everyone the best and people afflicted with diseases like sclero and others are always in my thoughts. A huge warm hug, Peggy
  14. Hi Kamlesh, It was so good to talk to you! This has been such an answer for me. Like I told you, the pain scale for me on my legs, lower spine and hips is an 8-10. At least with this device I am able to cover it up with the sensations. I can't imagine what it would be for me if I didn't have this other than I would be in a fetal position in bed in such pain. Even with this I am still laid up a lot of the days with the pain. I now have pain all over from Polymyositis, the sclero and fibro. I so hope this is a success for you. I will also send you a personal message to you with my emails. Good Luck!!!!!
  15. It's amazing to see this study as this is EXACTLY the issue I am suffering with right now. I have no motility in my esophagus and stomach and am dealing with constant reflux attacks. The kind if anyone can relate that are like being burned alive from the inside. I am having these attacks constantly day and night and aren't brought on by my eating the wrong thing but due to bile that forms and gathers in my stomach and then goes back up. My rheumatologist wants me to see a new gastro doctor that is coming on staff in August whose specialty is motility issues. Well I have now placed a call to him saying that I don't really think I can wait until August. He is of the opinion that I should have the fundoplication done. The gastro doctor that I have said he thought I was too far gone to have this. Well my rheumatologist disagrees with him. So I have put a call to him asking if he thinks this needs to be done then lets do it as waiting another 2 months seems just too much for me. I am like a zombie with no sleep. I am also aspirating into my lungs and my pulmonologist would like that to quit as it only worsens my pulmonary fibrosis issue. So to see an actual study about the exact thing I am experiencing is just amazing to me. Since October the disease has become so much worse and seems to be on such a rage. I am so puffy and bloated that all of my pants seem tight. I can't imagine that I have gained weight unless it's from a prescription side effect. Well off to see if I can doze a little before being jolted awake by an attack. I so hate those GI cocktails. I am however thankful that I have been able to stop it at 3 so I don't have to go into the ER. I hate that whole trip as it's so hard on my husband to sit in an ER all night and then have to get up for work. I feel so bad having to do that to him. Warm hugs, Peggy
  16. Well unfortunately there isn't any change in this whole reflux issue. I am constantly having attacks and my rheumatologist has prescribed an antibiotic in case there is some bacterial overgrowth going on. I am usually up all night and this night-time zombie thing is getting so old. I am so tired and it is so wearing on a person. I went to run a short errand uptown on Monday morning, which is only about 10-12 blocks and I can honestly say that there is no way I could possibly drive anywhere longer. I was having a hard time concentrating for even that short distance. It is so embarrassing if I'm talking to my sister on the phone and she is talking about something for a little while I am almost nodding off! So I am hoping I will hear back from my doctor by next week as he is gone. If it means making another trip down to the Cities for some motility testing I'm OK with that as I just don't think I can wait until August to do all of this. Here's another thing too that is soooo frustrating.......I am so bloated and so puffy from being in this flare that all of my pants are even tight. Now I know I can't possibly have gained weight as I'm not eating enough at all. So now I guess I'll have to see if there is one of the medications I'm taking that is causing some weight gain or if it's from my body being bloated and puffy and swollen all over just like it was when the disease started. I know I have to remind myself that it could be soooo much worse. There are so many out there that suffer so much worse than I do and they are such heroes about it. I know alot of you deal with oxygen issues and with raynauds issues that are so painful and make daily life such a struggle. So who am I to complain when I know there are so many out there with such hardships that compared to what I have it makes it look pretty trivial. Warm hugs. Peggy
  17. Wow, I never knew about the degree of elevation for the bed. I always thought the higher we are the better it is to keep the heartburn at bay. What I have is a wedge that I use and then I put pillows on top of that. Lately I have been trying to get up as high as I can and have been sleeping in the recliner after the attacks hit. I would be remiss if I didn't admit that I am as beaten down. I have tried since I was first diagnosed and through all of the pitfalls since diagnosis and further diseases that were diagnosed to be positive and have a fighting spirit. I have been quite strong through it all and have tried to be as "normal" as possible. Almost too much as far as my kids are concerned in that I basically hid from them just how bad I was. Well since last year that has gone out of the window and I no longer sugar coat it for them. Now I couldn't even if I tried. Since April though the escalation of the disease and what it has done to my body and spirit has left me felt like a beaten down dog. The last few weeks have been utter misery and I sincerely mean that. Like I said before, this is no way of life for anyone. To constantly have your insides burn with such intensity and pain; to not eat anything because you can't get it down; to operate on no sleep due to the pain and the discomfort is horrible. So I will take your advise and call his assistant tomorrow and ask that I be scheduled for whatever is necessary to get this ball rolling ASAP. I will not mince any words I can tell you that. I just had a simple piece of toast and can already feel the acid juices rising. Thank you for your information on the elevation. Why is it they don't tell us this stuff?! Blessings to you! Hugs, Peggy
  18. I am at a loss on what to say here as I am sure the words....I am so sorry.....just don't seem enough. For someone to actually give you a time table just isn't fair. I can't even begin to imagine what you are going through and all of the things that are going through your mind. I am sure you have a "bucket" list and I hope that you are able to do each and every one of them. I will keep you in my thoughts that you will every morning be able to do something that day that makes you happy; that you are surrounded by people each day that make you happy and that love you; that you are able to smile and enjoy the little things; and that you are able to do everything you wish to do! I have a plaque that I bought when I was diagnosed that says "ENJOY THE LITTLE THINGS AS SOME DAY YOU MAY FIND THEY WERE THE BIG THINGS". I send you a heartfelt huge hug!
  19. I haven't been on here for quite a while and I apologize. It is this site that brought me a wealth of information when I was first diagnosed and also brought me so much information and everyone is always so supportive and caring. My scleroderma has really amped up since October. Last October I asked my rheumatologist if I could come and see him every 6 months since I was "stable". Well that blew up in my face BIG, BIG, BIG time. After that time period every simple test blindsided me with bad news and the disease is in such a horrible flare right now. I now have the definitive diagnosis of Pulmonary Fibrosis, and we all know what that means. Cellcept though seems to be working and slowing it down so I hope that it continues to work. I have tried all of the other drugs and this is the last one so when it quits working unless something new is developed then I will be at the disease's mercy as far as my lungs are concerned. The diseases (I have 7 different autoimmune diseases) have manifested horrific pain in my legs and lower back. Through x-rays it was found that my spine is degenerating as well as disc disease. I have osteoarthritis and osteoporosis. I have had a spinal stimulator put in to help with the pain in my legs and it is a lifesaver. I still have breakthrough pain with it so I can't imagine if I didn't have it in. I have really bad fibromyalgia on top of it and that doesn't help with the pain all over that I have in addition to the horrific pain in the legs. Like many of you I have such terrible fatigue with this disease. At the strike of noon each day it's like I hit a brick wall and my body just gives in and I am so tired I can't hardly stay awake. With the reflux issue that I will be talking about this is only worse due to getting NO sleep at night on top of it. The reason for this post is that the disease has decided to really manifest itself in my digestive system. I was in the hospital for a week in April due to my stomach motility being gone and it was full of bile and this was the reason for my having reflux attacks so bad that after 11, yes 11 GI cocktails they didn't work and I ended up in the ER twice in one day and then hospitalized. The doctors did an endoscope and found that not only is the motility completely gone from my esophagus but it's also gone in my stomach. So now food isn't moving down my intestines. At the time I was put in the hospital my bowels hadn't moved for quite a few days too so I was completely backed up. So after the hospital stay I went to see my gastroenterologist and he informed me that it was his opinion that it didn't make any sense to do any further testing as there wasn't anything they could do. He said the disease would continue to move down my digestive system and that I would have to at some time go to soft foods; then pureed food; and then a feeding tube. This was devastating news. So I then had my appointment with my team of doctors at the University. The PFT was worse and that was when I was given the news that I now had the Pulmonary Fibrosis with the disease. The Cellcept is working and hopefully it will continue to as when it does we all know what that means. The rheumatologist then said he didn't agree with my gastro doctor in that he thinks I should be having a fundoloplication tried. The University is getting a new gastro doctor in August and his specialty is motility issues. So he wants me to see him when he's there in August and they will do the motility testing and then see about doing the surgery. He said the worst thing is that the surgery would have to be "undone" if it didn't work. So here is my dilemma and my question to others who suffer with this. I am now adhering to ALL of the restrictions so as to try and help any motility issues. This means the usual.......no chocolate; nothing hot or anything to trigger it; nothing in my mouth after 6pm; no pop or any carbonated beverage; no pain medication other than the pain medication pain patch that I wear but I am trying to not take the orals); and my bed is elevated to where I am sitting up. When I have an all-out reflux attack it is like being burned alive from the inside/out. It burns through my whole chest up to my neck. It is excruciating pain and I am almost jumping up and down and tears roll down my eyes it is so bad. So what they have me do is drink the GI Cocktail (lidocaine with maalox) to numb my insides. I am able to do 3 of these and when 3 do not work then it is off to the ER for them to do a Protonix Iv and then zofran and a pain killer. What is happening now is the bile is backing up my esophagus and it's happening ALL OF THE TIME. I am having attacks during the day and even at 5:30am. They are brought upon by nothing and not triggered by anything I have done. It is very frustrating. This is no way to live and I mean that from the bottom of my heart. Two nights ago I literally just cried and actually wrote a note. I am blessed in that my religious associates are calling me all of the time to check on me. I try to talk to my husband about this as he is the one who sees me suffering but even he doesn't understand. He is suffering his own issues with what this disease is doing to me and him having to watch me suffer every day. I am at a loss on what to do. Does anyone have any insight or advice?
  20. I just had this done!!! I did the trial which was a huge success and couldn't wait for the final surgery. However due to being bumped for the first date and then landing in the hospital with a severe reflux issue for a week it was delayed quite a bit. However on April 25th it was permanently implanted and it is wonderful. To give some background for the reason for me having this done... I have systemic sclero which started out with peripheral neuropathy. The neuroapathy started out as tingling, then went to numbness of my hands and feet, and then went to permanent nerve damage that has moved all the way up to my knees. Now it has escalated into horrific pain in my legs. My rheumatologist didn't feel it was from the sclero but rather from the neuropathy or the Polymyositis, which I also have, along with 7 other autoimmune diseases. I have been on pain killers and pain medication for the pain for over 2 years. I wear a pain patch and take the oral meds. However these have really made my reflux issues more difficult in that pain medication don't help the motility issues I have. I no longer have any motility in my esophagus nor my stomach. My rheumatologist doctor said getting off of these pain meds will help this issue. I have tried neurotin and lyrica and also a tens unit and none of these worked. So I went to a Pain Management doctor and he said he wanted to try the Spinal Stimulator. He said if there is a 50% improvement it is his opinion that it would be worth doing the permanent surgery. Well I did the trial for 5 days and when it was time to take it out I told him I had a 98% success and he couldn't believe it. So I had a neurosurgeon perform my surgery. I met with him for a pre-op appointment and we discussed what was going to happen. He takes a small portion of my spine out to put the stimulator in. He then puts the needles in and actually ties them to my spine so they hopefully won't move. He goes by the trial run on which nerves he is working with. In my case I wanted it to cover down both of my legs all the way to my feet and to get it up as high as he could on my back. My lower spine is degenerating as well as having disc disease. This is a new development (there have been many new developments for me in the last 6 months due to this disease) and the neurosurgeon is of the opinion that this is something that is going to cause a lot of problems in the future so he wanted the stimulator to work for this too. So he tried to get them as high as he could. He then makes a fold in my skin in the lower portion of my back that holds the battery. The operation takes about 1 1/2 hours and I was under for the entire surgery. Some people are awake for portions of it so they can tell the surgeon where to place them but my trial run went so well he knew where they were to go. I have a remote that I now position or point to my side to change to a different setting. I have met with the Boston Scientific guy twice now to change the remote settings. After a couple of weeks I realized that the setting for the back was affecting my rib cage more than my back. I also have had the pain in my legs change to both the front of the legs and now to the thigh area and lower calf of each leg. My pain scale was always a solid 8 so when I did the trial run it was on 24/7 due to it working so well. You see the stimulation that is provided by this is like having a massage inside your body. I have different types of sensations in my remote. One is a pulsating feeling; one is like having rainfall; one is like a massage feeling. It's hard to explain. When I met with the Boston Scientific Rep (this is the company that makes the device I have in my body) he would have a laptop computer where it would bring up a body and he would be able to connect to my device in me and would be able to tell exactly where the needles that the surgeon placed were at. He would then send a sensation to my body and I would be able to feel it. From there he would be able to change what it would feel like and where it would hit. It is just soooooooo amazing. Every night I am awakened at about 1:45am with the horrific pain. This would be about the time that the pain med that I would take at bedtime would wear off. I would be in such pain that I would usually be up from then until about 5am every night. Well now I usually turn the machine off when I go to sleep. So now I am awaken at 1:45am with the pain and I reach for the remote and turn it on and choose a setting and within a few minutes my pain is replaced with this wonderful sensation and I go back to sleep. The recovery for the surgery is 6-8 weeks. With mine the surgeon really tied them to my spine. But still there is no bending; no lifting over 5lbs; no twisting; no arms over your head. I followed this religiously because when I did the trial run these restrictions were the same then. Well you can't shower for 5 days so I thought I would just bend a little over the sink to rinse my hair with a spray hose and I could tell that one of the needles had moved because the sensation had changed on where it was hitting on my legs. So when I did the real surgery I made sure that this didn't happen so I didn't want to wreck the success of the surgery. I had Home Health come for about 3 weeks. My mother-in-law brought me one of these deals where you can pick things up with this device similar to what you see people use when they clean the ditches in that it's a reacher. It is a life-saver. The first few days it seemed like I was dropping everything and you can't pick them up. I guess the surgeon that did mine really really ties the needles to the spine so they shouldn't move. It's amazing too that I can be sitting and I bend my body backward and it moves the needles and it intensifies the sensation. This is handy when I'm somewhere where I may have the sensation running in my body and I need it a little stronger but I don't want to grab my remote so all I have to do is bend backwards a little bit. I hope all of this is making sense. Like I said this is one wonderful device. When I asked the surgeon who this would work for he said anyone who has pain anywhere from the neck down. This truly has been wonderful for me. You can go to you-tube and watch the surgery. Just search "spinal stimulation surgery". If you google it you can also get a lot of information. If you need more information just let me know. You can email me as I am not on the computer much now due to all of the other sclero issues I am having right now. Good luck on your decision. I can't endorse it enough!!!!! Warm hugs, Peggy
  21. I have suffered with severe debilitating pain in my legs. I wear a pain patch as well as take pain pills and still suffer. So I have been seeing a Pain Management Doctor who recommended that I do a spinal procedure. So on Thursday I did a trial of this. So he inserted a needle into my spine and I have a remote that I can increase or decrease this massaging stimulation down my left leg. This is what I feel rather than the pain. With this 5 day trial there is no bending; no lifting over 5 lbs; and no putting my arms above my legs; and no baths or showers. He said when he usually goes to remove the trial his patients want it left in due to the change it made in their lives...........well I am one of them!! I hate that he's taking this out tomorrow. So I have decided to schedule the actual spinal surgery where the spinal surgeon will put 3 needles in that will be tied to my spine. One needle for each leg and one for my lower back. I have noticed that the trial needle has moved and the stimulation is in different places than the beginning. The recovery period for the actual surgery is 6-8 weeks and that seems to be the only downfall. I haven't posted on this board for some time as I am rarely on the computer due to the pain taking so much out of me. However this board has always been such a huge wealth of information that has helped me in fighting this disease I wanted to share this with you. I know what this disease does to all of us on a daily basis and I have a bracelet that says what I live by on a daily basis..."IT IS WHAT IT IS"... Warm hugs, Peggy
  22. The pins and needles issue is how my disease started too. With both my hands and feet they would tingle like they had fallen asleep. From there then they went numb and then the numbness climbed up my legs. I finally got in front of a neurologist who dealt with this (peripheral neuropathy) and through all of his tests confirmed that it had done and continues to do permanent muscle damage, so far up to my knees. I haven't seen him now as all the treatment has been passed on to the rheumatologist. It was because of the neurologist that he saved my life. He could have kept treating this but he knew there was more going on and wasn't satisfied so he had me see a rheumatologist, who then diagnosed immediately the scleroderma and sjogren's. Now I have 7 different autoimmune diseases and it keeps going, and going, and going. The last diagnosis was just 2 weeks ago with a CT to check a lung nodule. The nodule thankfully hasn't changed but in just 6 months I have degeneration of the spine and disc disease, which they feel will continue to deteriorate. In addition there are esophageal issues that have declined; foot padding has disappeared as well as having planter faciitis, and never mind the continual pain that I deal with and horrible fatigue. So this disease is never ending and constantly changing. I am hoping that at some point I hit that time period that people talk about when they go into some type of "remission" where everything slows down and calms down. So far it's the opposite for me. It's just good to see other people who had the same start to all of this as I had. Warm hugs, Peggy
  23. You know it was meant to be that I just decided to check in and see the posts. I haven't been online much due to just not being able to do much. So I come across this post that talks about the "good days". I have spent the last 2 days sick. Monday was a day in bed and today I ventured out to the couch for a change of view. But when you talk about being able to maybe do 1 thing a day and feeling good about that so rings true for me right now! This is coming from someone who was such an energizer bunny who was go, go, go. Now I'm lucky if I can keep up with the laundry and heaven forbid if I can keep up with the ironing. Never mind the other things that linger out there that aren't getting done and it's driving me nuts. But the pain that I have is so terrible that it just hurts to move; I could sleep all day and still not feel rested; I can't eat as I don't have an appetitie, plus it gets stuck in my chest so why bother. Since January from one test to another things are going downhill and thank heavens my apt is next week with my rheumatologist. I haven't been doing the methotrexate treatments as it just became an issue for me of "qualifty of life" as I was sick 6 of the 7 days in the week and only had one good day which was the day befor my treatment. So I know he'll want it started up again. I am also hoping for the possibility of a pain pump. The pain management doctor wanted to do a spinal block but that treatment seemed no different than the TENS unit and that didn't work so I decided against this method of treatment. So I want to thank all of you for somewhat validating how I feel. To know that there are others of you who feel this way and are hoping for the ability of doing "1" thing a day leaves me feeling somewhat better. Now to remove the guilt that comes with that and how horrible this is for my poor husband. This disease can sure do alot to a person. Warm hugs, Peggy
  24. I have terrible pain that is constant in my legs. This is either due to the sclero or the polymyositis but more than likely it's from the peripheral neuropathy that I also have. I have been on a pain patch and oral pain meds for a very long time. I also have tried IVIG therapy; Lyrica; and Neurotin, and none of them have helped. I recently tried Cymbalta and a TENS unit and they didn't help either. So I am now seeing a Pain Specialist due to the fact that I'm worried I am building up such a resistance to the pain patches and oral meds that I have to keep upping the dose to get any relief. How long can I keep doing that? So he is thinking that I should try a Spinal Block / Stimulation where it will stop the pain from getting to my legs. I have a DVD on it and haven't watched it yet. He is currently talking with my neurologist and rheumatologist to see what they say. Has anyone heard of this? Has anyone tried this? Good Results? Anything to watch out for or to be worried about? Warm hugs, Peggy
  25. This whole issue so burns me to no end. It was deemed by the Social Security Administration in 2008 that Scleroderma is to be considered a "compassionate allowance" disease in that if a person has the medical documentation of this disease and accompanying diseases that there application should be "fast tracked" for approval and due to the "compassionate allowance" should be approved right away. So what is going on? I applied in November of 2008 (right when the compassionate allowance ruling happened). I brought this to the attention of the gentleman who did my phone interview and he sent this with my application and asked that it be fast tracked. He was so helpful during my phone interview he even went through my application and changed some things to make them better. I was then approved in December and received my first check in January of 2009. I had not worked since July of 2008 so I had already met my 6 month waiting period. So what I am trying to say is this...............DO NOT GIVE UP! Make sure you bring to their attention that you do have a disease that is in their own classification of "compassionate allowance". Make sure your medical documentation really puts forth your inability to hold down a job due to all of the problems you have from this disease. I so hate that you are having to go to a lawyer to do this and then have to share with them the earnings you have coming to you. I will continue to keep all of you in my thoughts. This should not be happening to any of you!!!! Warm hugs, Peggy
×
×
  • Create New...