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Everything posted by Fictionite

  1. Thanks so much for your responses. I have managed to get myself settled down a bit, and since I'm relatively well at the moment, my situation doesn't seem quite as urgent. An interesting coincidence... My former doctor did recommend someone for me who just happens to be Janey's doctor in Albuquerque, but when I called to make an appointment, I was told that he had retired last year. That one is still a mystery, but I was scheduled with the "questionable" doctor in the same office. I was also wary about seeing the doctor who had the first available appointment, but my insurance runs out at the end of this month, so I didn't have the option of waiting for a different doctor. Meanwhile, I saw my primary care physician, who is another new doctor for me (but a very good one), and told her about my experience. It turns out that she knows this rheumatologist and says that he is a good doctor, but tends to be on the arrogant side. If I'm ever able to get insurance again, she said she will make some calls to get a rheumatology appointment for me in Lubbock, TX. This is actually closer to me by half the distance. She gave me a nice steroid shot in the hip, and I'm doing much better today as far as the joint pain goes. I also have an endoscopy & colonoscopy scheduled for Monday, so maybe I'll get some help/meds for the GERD and IBS before the 31st. Now, I just wait on my social security hearing and hope that it gets approved based on the records/statements from the other doctors. And, I can only hope that no new symptoms or pneumonia-like issues flare up before I can "afford" to see any kind of doctor. Thanks again for your encouraging replies. ~LeAnn P.S. Janey, I did try the doctors in Las Cruces, but they were the ones who couldn't see me until September. And, thanks for the pneumonia info. It's quite possible that my last round of it was the aspiration pneumonia. The doctor in Albuquerque did order chest X-rays and enough bloodwork to satisfy a vampire. Hopefully, the results will be forwarded to my local primary care physician. When I told her that it might be my last appointment for a while, she said that she would continue to see me whether I have insurance or not and whether I can pay or not. It's not all bad, see?
  2. Hi, All. After waiting three months to see a new rheumatologist and getting my hopes up for finally getting proper medical treatment, I'm right back to square one. I have a lot of experience with "square one" - doesn't make it any easier, though. Here's the short backstory: I recently moved across the country and had to leave behind the excellent sclero specialist in Kansas City after taking months to find and see him. I now live among my entire extended family and have a good, personal support system; however, I reside in a small town with limited medical resourses - especially the kind I desperately need. The closest rheumatologists are 4-5 hours away, but I do have family to drive me. With four different rheumatologists (two of them considered "experts") confirming sclero and Raynaud's last year, I was shocked when my new doctor in Albuquerque told me that he could not make a diagnosis of scleroderma. In fact, he wants to start all over and isn't interested in my medical records - didn't even want to look at them. The new doctor is convinced that all of my major symptoms are a result from acid reflux (chronic pneumonia, joint pain, fatigue??) I had pneumonia three times last year, and he is sure that acid reflux caused it. When I told him that I didn't start having stomach pain, constant bubbling in the back of my throat or swallowing problems until about four weeks ago, he said that I could have had acid reflux for a year or more and never known it. He explained that the reflux could be dropping into my lungs causing inflammation. OK, so then why don't I have "pneumonia" right now? Currently, I don't feel sick or have breathing problems (thankfully!) - just overwhelming fatigue, joint pain and throat pain withreflux. Has anyone ever been told anything like this? Is it possible to have chronic acid reflux to the point that it's falling into your lungs and never even experience the slightest symptoms of heartburn? Of course, I'm in the process of trying to find another new doctor. I selected this particular doctor beccause he was the one who could see me the soonest. There are only so many rheumatologists within driving distance from me. Most of the others that I contacted could not see a new patient until late summer to September, and this was back in mid-January! I will start working on finding a new doctor after I take a few days to calm down. Thanks for listening. ~LeAnn
  3. Hey, I have been waiting for your update, and I'm so glad you wrote back to us. I'm so sorry about everything you're experiencing on top of your medical condition. You are obviously an incredibly strong person, and I know that you will get through this. I know what it's like to have one ongoing "life" crisis after another without any break. I think it's common knowledge that stress can lead to various medical conditions; however, I believe that is beside the point when there are serious physical issues to address/diagnose/treat. And, having a mental health issue does not always mean that your physical symtoms are directly related. What I tried to do was keep the conversation directed at my physical symptoms. I still answered the "mental health" questions, but I tried to stay calm and kept my answers brief in order to direct the focus onto my physical symptoms instead. We both know that knowing something is wrong, but not knowing what it is only leads to more stress. Something else you might try before your next appointment... Try to avoid stressful situations before seeing the doctor. If that's impossible, then arrive early and sit in your car for a bit. Do whatever kind of "stress management" techniques that work for you - slow, deep breathing or listening to music. Concentrate on the items you want to talk about, or go over your list. Think about how you're going to describe your symptoms. I know this sounds corny, but you have more than your fair share of distractions. This might get your mind focused so that you can express yourself the way you want to. If you return to this doctor, maybe you could mention something about how you want to discuss the physical symptoms that you weren't able to talk about at the last appointment. If tests or biopsies aren't ordered, then you might consider a new doctor. I know it's not fun to go through this process over and over (boy, do I know that!), but sometimes that's what it takes. I wish you the best. Please keep us posted. ~LeAnn
  4. I know, I know. I call it the medical merry-go-round with a different doctor, test or diagnosis at each stop. I can't even remember each bizarre, and totally wrong, diagnosis. I was even told that I had kidney disease, and after contacting my family & friends with one week to go before starting dialysis, I got a call one night from a doctor (who just happened to be studying the test results) and was told that the "lab" made a mistake and that my kidneys are in great condition. Lovely, right? Like you, I researched each diagnosis before it was eliminated from the competition. I can't help myself - I'm an info junkie. BUT, what I learned after the kidney incident was to do the research, but not get too stressed over the diagnosis until I knew for sure. Of course, I'm sure you know that this is almost impossible, but I did try. In my case, I think all those doctors could sense my desperation to get an "answer" - to know what was wrong with me. In the process of thinking out loud and tests to rule out different possibilities, doctors sometimes add to our frustration. I don't know if any of this is helping you, but hopefully you'll know that you're not the only one who goes through the "now you know it - now you don't" game. Just hang in there the best you can, and if you feel like you're getting the run-around, speak up or change doctors. And, come over here to blow off steam any time. We can handle it because we have all been there. I'm still there. Ha. ~LeAnn
  5. Thanks Mary, and to everyone else who offered advice/support. I know that I need to change my expectations for myself. I also know that I need to learn how to be satisfied with and proud of my "little" accomplishments each day. I am trying, but my previously type A personality gets in the way sometimes. I think I could handle the pain and physical limitations if I could just muster up some of my old, fierce energy. Is today a pity-party day? I think so! Ha. You're all invited. Thanks for being here for me. ~LeAnn P.S. We'll make it, JJ - I know we will!
  6. Hi. I'm glad you posted this topic, JJ, because I'm having the same problem with the same time frame. This really hit me about mid-January, and I'm so tired of being tired! I'm taking Cymbalta for depression, so I know that's not my problem; however, I don't necessarily feel sleepy - just overwhelmingly exhausted. Sitting around all day can really wear a person out, I guess. I wish I could be like Mary & Peanut and not dwell on what isn't getting done, but I'm still new at this (not quite 6 months since diagnosed), so my lack of energy and inability to do-do-do/go-go-go is incredibly frustrating. The worst part is that my mind is active and ready, but my body won't cooperate. I feel like I need a serious jump start. I'm seeing a new rheumatologist on the 17th, and I'd like to address this fatigue issue. I read about a stimulant drug, but has anyone tried anything like this? While I love a good nap, trying to sleep doesn't help. I feel like all I do is sit at the computer or read. Anything that involves actually moving my body is out of the question. Any extra advice is appreciated. Thanks, LeAnn (Fictionite)
  7. You're so funny! I'm glad you enjoyed your funnel cakes. My attitude is that if dry toast and chicken broth are going to rip me to shreds, then I might as well eat enchiladas and cookies to enjoy for a short 15 minutes. What's really killing me is no coffee or tea since the beginning of January. B-o-o H-o-o. Have a stress-free day all. ~LeAnn (Fictionite)
  8. Hi, Jackie & Everyone. Sorry you're going through the bloating & swelling, but it sounds like you may have some good suggestions here to get some relief. My stomach, from just beneath my ribcage to my abdomen was HUGE for seven straight months. I was in the process of riding the medical merry-go-round of doctors and didn't yet have a diagnosis. I took pics of myself (for validation, maybe?), and my tummy was bigger than it was when I was nine months pregnant. I didn't take any medicine because at that point, nobody had figured out what was wrong with me. During that 7-month period, my weight fluctuated 10-15 pounds every day. I was somewhat on the small side (size 6), but I ended up having three different sizes of clothes - all the way up to 2x in pants because of my stomach. I couldn't handle any kind of pressure on my stomach and pretty much lived in soft, drawstring pants. For some reason, still unknown to me, the swelling just disappeared one day. Hope you get some relief soon. ~LeAnn (Fictionite)
  9. Hi. I don't have much to add for the social situations (I no longer have a social life - ha), but I know that the shaking, weak hands are frustrating at home, too. However, I did a few things that helped speed me up in public because you know how irritated people can be when they have to stand in line behind a "slow" person. I went to the bank and changed my signature so that it's only my initials instead of having to sign my full name on a check or credit slip. I also carry a big purse with a compartment that I use to drop change and receipts into -- I wait until I get into the car or back home to organize everything, so that I can take my time. The more I try to hurry, the more I drop everything. For home, I bought a few large-handled utensils so that I don't need a bib, a toothbrush with a big handle and a few "fat" pens. I also ordered a pair of tweezers with a circular grip. Still dangerous, but at least I don't drop them as often. Hope this helps. Take care. ~Fictionite
  10. You mean he could have numbed my sinuses to make this easier?!!! Now, I'm really "snorting" upset. I have had sinus problems for the last five years -- even had a surgery -- but, I lived in Kansas during that time, which is one of the worst places you can live if you're an allergy sufferer. I moved to New Mexico this past November and thought that I would not have to deal with those problems ever again. This current sinus problem started early last month. I did have two different antibiotics and neither worked. (I now recall several sinus infections in the last few years that never responded to antibiotics.) When I complained that I still wasn't better after almost six weeks, I was referred to the ENT. I will say that now that I have used the Flonase for a few days that the pain has diminished quite a bit. I was using Nasacort AQ, but that wasn't working for me like the Flonase does. I guess there is more steroid content in the Flonase? I will say that since my original post and reading all of your replies, I have thought more about my nose. I realize now that what I thought was nasal congestion many times was really just inflammation. I don't feel stuffed up. It feels more like pressure and that my nose has closed up to where it feels like only a pinch of air can get through. Does that make sense? Anyway, thanks for responding. You all make me smile every day, and I appreciate your help. ~Fic
  11. Hi, Fellow Warriors. I have a condition that I haven't yet read about from any of you. I just saw an ENT for chronic sinusitis, and he informed me that I do not have a sinus infection, nor do I have an ear infection. He thinks my sclero is causing swelling in my sinuses and that it just "feels" like allergies or an infection. Hmmm. It might be a "fake" infection, but the constant headache and ear pain is quite real. He determined his diagnosis by taking a teeny, tiny camera attached with a cord and ran it up one of my nostrils until it ended up in the back of my throat. I hope he memorized the image, because he will NEVER do that to me again. My poor snout! Anyway, there is no drainage - only redness and swelling, which feels like pressure, which feels like allergies. OK. I told him that one of my bazillion tests last fall included a sinus swab, and the results showed a high eosinophil count. (I'm told this means swelling, scar tissue and/or hardening of the affected organ or area.) That seemed to convince him that he was right. Soooo, does anyone else have this unusual sinus swelling? If so, how is it treated? He prescribed Flonase, which has helped with the nasal inflammation, but not the pain. I know this isn't the most serious of concerns; however, it would be nice to have a break from the daily headaches that make me oh, so cranky. Thanks, Fictionite
  12. Hey, FL. My attorney did tell me that going before the ALJ is when he usually "wins" them. Your email made me feel even better about the situation. I got lucky in that my attorney has won cases for sclero patients in the past. I can't tell you what a relief (and shock, really) it was when I didn't have to spell or explain the disease to him! He even spelled Raynaud's correctly on his own! Ha. Thanks for your expertise, and I posted a reply to your post regarding your tests. ~Fictionite
  13. Hi. OK, I took the easy way out by hiring an attorney (on contingency) who specializes in this area to handle this for me. I thought I could manage by myself, so I applied online last month and didn't think the process was so tough, until... I received a letter from SS saying, "Your application has been denied because you did not file an application." Is this as clear to all of you as it was to me?! Growl. I did provide the attorney with everything I had (His commercial just came on the TV - now, this feels creepy), and I feel better letting someone else fight this one for me. My plate of "life happens" is so full that I can't possibly handle another hefty serving of stress right now - not to mention that writing by hand in that volume is out of the question for me right now. I know this is probably not the solution any of you are looking for right now, but it was the best option for me. Besides, the sooner I get my benefits, the sooner he gets his large piece of my pie. That's a good motivation for swift action. Ha. Best of luck to all of us who are waging this war for financial help. ~Fictionite
  14. Hi, Karen... Yes, Yes, Yes! Tell the doctor everything - even if it doesn't seem related. The onset of sclero for me included the worst constipation of my life for six straight months, which was then followed by the lovely, opposite problem. I read somewhere on this website (sorry I can't tell you exactly where) that this is relatively common. Also, the swelling in my hands mysteriously vanished right before my appointment, but he took one look at my hands/nails and diagnosed Raynaud's immediately. There is more to it than just the swelling, and the doctor will know. I created a complete medical history/record before seeing my sclero expert for the first time. I was so nervous, sick and stressed from seeing so many doctors who didn't have clue that I was afraid I would forget something. I tried to include the date the symptoms started and any changes. I also try to update my record every few weeks or when I notice a new symptom or change. I broke it down into categories with descriptions for each one like this: - Constipation - Stomach - Urinary - Body Swelling - Rash - Hands - Breathing - Fatigue - Eyes - Joint Pain - Appetite - Skin/Hair - Throat My record is now a 7-page document, but it has helped me in more ways than one because I now have my own medical file that I control. I realize that this might be over the top and rather anal, but anyone who has been through countless doctors who ignore the symptoms or randomly pick one or two to treat knows how valuable this info can be. This also helps when you have to change doctors or see a specialist. You would be shocked to know how much of the info that you give your doctor sometimes never ends up in the chart. I hope my example helps a little with your symptoms list. Good luck, and let us know what happens. Namaste ~Fictionite
  15. Thanks for the welcome. I have actually been reading posts since last October, so I feel like I already know most of you, even though I haven't posted. I have learned so much through the forum and on the website over the last few months. I'm glad that I finally registered so that I can participate and "talk" with everyone. As I have read so many times... It's wonderfully comforting to know that I'm not alone. Namaste, Fictionite
  16. Hi, Cheri. From one privacy pirate to another... This is the place to let it go. First, all of us truly care; second, everyone needs an outlet. This particular outlet is full of receptive, caring people who really listen. May bless your heart be blessed for having to deal with sclero on top of your husband's condition. I know how hard it is for me to talk with my family and friends about my illness, and I still struggle with wondering if they think I'm a pain or boring because it seems like I never have anything "good" or "positive" to talk about. I usually direct the conversation around their lives. The irony is that I moved across the country when my condition worsened so that I could be closer to family and have their support. (Maybe sclero has twisted my logic among other things.) One thing I do know is that if I sense that someone I love is upset or stressed, I must find out what's wrong and do whatever I can to help - even if it's only listening. It would drive me crazy knowing something was wrong, but not knowing what it was. I don't know if your family is aware that you're going through such agonizing stress. I would never presume to give anyone advice, but maybe it would relieve a bit of your burden to talk with one of your kids or someone else in your family. I'll hope that the news you get will include or offer a viable, healthy solution. Please remember to take care of yourself. Keep in mind that we're here for you, and please let us know how you're doing. Namaste ~ Fictionite
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