Jean in Newcastle Posted March 25, 2013 Share Posted March 25, 2013 I thought I'd do a new thread for a new week. How is it going? Quote Link to comment Share on other sites More sharing options...
Slipper Posted March 25, 2013 Share Posted March 25, 2013 We have seven medical appointments scheduled for this week and oral surgery for my oldest next Monday. Busy, busy, busy! Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 25, 2013 Author Share Posted March 25, 2013 That is a lot of running around, Slipper. I hope it all goes well. The combination of pushing myself really hard and a fall has me in pain. I'm on my max. dose of anti-inflammatories. Quote Link to comment Share on other sites More sharing options...
somo_chickenlady Posted March 25, 2013 Share Posted March 25, 2013 Sorry you are in so much pain Jean!! :( I'm doing good here, just tired. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 26, 2013 Author Share Posted March 26, 2013 Hit a wall - splat. Can't help ILs tomorrow. I just don't have even one ounce of energy left right now. I hope I can sleep tonight. I didn't sleep last night due to pain and fatigue. (Do any of you have the phenomena of being too tired to sleep?) Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 27, 2013 Author Share Posted March 27, 2013 Good morning. How is your Wednesday? So far, mine is looking good. Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted March 27, 2013 Share Posted March 27, 2013 can i jump in to your group to vent for a minute? i probably have several chronic issues (a friend is trying to convince me i have mitochondria problems) but my low energy and emotional issues are things i generally take in to stride. but i'm totally over my head frustrated with physical issues! i injured myself in martial arts testing last feb (2012) - i was taking a homeschool class with my boys, to support them. it was a struggle for me - but then i fell in testing. My knee would not get better. I had PT and 4 different scans, but nothing. finally my doc admitted she was stumped, so i went to another doc who had a clue but didnt want to operate. I went to an accupuncturist who did get the swelling down, but that increased the pain. she recommended another doc, who agreed to operate. so was 5 weeks this past monday and i'm still on crutches. this is very frustrating! i seem to be very slow to heal (yeah, i think i have inflammation issues and the easter candy isnt helping). But then 2 days ago aparently I cracked my rib on my crutches! Um, you cant use crutches with a cracked rib! i tried and it got worse, i had to break out some of my narcotic pain meds! oh, and just to make it more fun - i dont want to take time off of school because we already missed 8 weeks due to various health and mental health crises, and i still have to cook everything because we have multiple food allergies. I'M SO FRUSTRATED!! i just figured you guys could handle this vent more than the general population. Healthy people seem to not want to talk about this stuff, kwim? Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 27, 2013 Share Posted March 27, 2013 Hi all, Slipper, I hope your appts have been productive! Jean, how are you after that fall? I posted about this issue on the chat board, but wanted to ask here (couldn't find the thread)... Have any of you heard of Visual Midline Shift syndrome? Here's a link. I seem to have the left shift pictured in one of the diagrams, plus an anterior shift which is pretty extreme - to the point of my body creating new, larger muscle groups. DH and I are now researching whether to pursue further evaluation and treatment. The thought of somehow losing the sensation that I am constantly navigating the bridge of the Titanic is appealing. A catch phrase in our house is, "Graceful like Mommy," as I wobble so often. I don't know. It certainly would explain a lot, but I am reluctant to chase a rabbit trail. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 28, 2013 Author Share Posted March 28, 2013 Dbmamaz - that sounds very painful and frustrating. And yes, we can relate here. Spryte - I saw your thread on that and it is not something I've heard of. I have the opposite problem. Often when I'm lying down, I will feel like there is an earthquake. I have to look at a fixed point like our hanging lamp to make sure that nothing really is shaking but while I'm still having the shaking feeling, the lamp is perfectly still. I am totally fried. I had another 11 hour day moving the ILs today. I don't know how long I will be able to do this. Quote Link to comment Share on other sites More sharing options...
Reflections Posted March 28, 2013 Share Posted March 28, 2013 can i jump in to your group to vent for a minute? i probably have several chronic issues (a friend is trying to convince me i have mitochondria problems) but my low energy and emotional issues are things i generally take in to stride. but i'm totally over my head frustrated with physical issues! i injured myself in martial arts testing last feb (2012) - i was taking a homeschool class with my boys, to support them. it was a struggle for me - but then i fell in testing. My knee would not get better. I had PT and 4 different scans, but nothing. finally my doc admitted she was stumped, so i went to another doc who had a clue but didnt want to operate. I went to an accupuncturist who did get the swelling down, but that increased the pain. she recommended another doc, who agreed to operate. so was 5 weeks this past monday and i'm still on crutches. this is very frustrating! i seem to be very slow to heal (yeah, i think i have inflammation issues and the easter candy isnt helping). But then 2 days ago aparently I cracked my rib on my crutches! Um, you cant use crutches with a cracked rib! i tried and it got worse, i had to break out some of my narcotic pain meds! oh, and just to make it more fun - i dont want to take time off of school because we already missed 8 weeks due to various health and mental health crises, and i still have to cook everything because we have multiple food allergies. I'M SO FRUSTRATED!! i just figured you guys could handle this vent more than the general population. Healthy people seem to not want to talk about this stuff, kwim? I don't mean to say "like" - really I mean that I'm sorry and I totally *get* what you are saying. I've been reluctant to join in on this group - though I lurk - because on the whole I don't have a chronic illness but I seem to be chronically unwell, iykwim. About 5 years ago I had a miscarriage and pneumonia at the same time and later developed pericarditis that went undiagnosed for almost a whole year because doctor after doctor couldn't find it. It wasn't until my shoulder dropped from pressure of the fluid on my spine that a doctor ordered a mri and the bells and whistles went off. Since then I have had more bad days than good ones. I look normal, but my kids hear all the time about how I can't walk the stairs or play with them outside or finish the read aloud book because mom just.can't.breathe. (sometimes it feels like more effort than it's worth). And stuff like my upper back pain that I posted about a while back happens which on the whole seems acute, but I have these sorts of things chronically. All of you here seriously ROCK - that day after day you keep on going - you keep peddling - has been an inspiration to me. Seems sort of silly to hear, I know, but if you all can do it under your particular circumstance then *I* certainly have nothing to whine about and can certainly do it! Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 28, 2013 Share Posted March 28, 2013 Katherine and dbmamaz, I think that both of you can join in here with us. Even if your problems aren't as longstanding as some of ours, they are certainly more than a typical cold or bug which is what most people's experience with illness consists of. My dh, who has many wonderful qualities, is unusually healthy. He is the only one in the family. He doesn't even get sick with a minor thing like a cold most years. In fact, since we have been together, I think he has been sick maybe three weeks in total and that is since we have been boyfriend and girlfriend, almost 31 years ago. The main reason it is even so high is that he did get the same mycoplasmic pneumonia that we all got when we lived in Northern CA and that did take him about a week to recover. Otherwise, he has had strep throat twice (when our son was a strep carrier and used to get them all the times) and a few colds over the years. Now compare that with me, who gets put on antibiotics for bronchitis or sinusitis or both or pneumonia about four to five times a year. Then there is my youngest who in her 2.5 years in Northern VA, while a young teen, managed to get Mono, Fifth Disease, and Hand Foot and Mouth disease along with several bouts of bronchitis. Oh and when he gets sick, he sniffles and feels a bit bad. I get things like partially collapsed lungs or diminished hearing to the extent that I may be eligible for insurance paid hearing aids.It isn't that I want to win the worst case scenario but rather, I want to just elucidate how someone with nothing wrong at all, sometimes has a hard time acknowledging the difficulties someone with chronic illnesses may have. My dh isn't a denier of my conditions. He often intervenes to make things easier for me or to remind me not to do something that would be bad for me--- like I though golfing might be fun since I was thinking how lovely the greens look and how walking around would be great exercise and there is no running, which I am forbidden to do due to not fully healed ankle fractures. He rightly pointed out that it would be a horrible thing for me to do since it involves twisting and using your arms in a way that would end up hurting my joints and particularly my cervical joints by my neck which are already disintegrating and those joint problems can lead to paralysis, if no addresses. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 28, 2013 Author Share Posted March 28, 2013 Katherine, this is a good place to discuss any of those health frustrations that impact your life. :grouphug: Quote Link to comment Share on other sites More sharing options...
Reflections Posted March 28, 2013 Share Posted March 28, 2013 You all are very welcoming, thank you. :) My dh too, is not a denier but he doesn't quite get it either. He too *never* gets sick and so doesn't quite understand what it's like to be like that over long periods of time. My mil on the other hand thinks (even when I had pericarditis) I am a head case. It's hard when people and doctors tell you that it's all in your head and you *know* it's not. I hear that all the time from other people (mostly women) not only here but irl - it really burns me up. ETA: I mean that other people get told it's in their heads when it really is some sort of illness. Quote Link to comment Share on other sites More sharing options...
Reflections Posted March 28, 2013 Share Posted March 28, 2013 Hit a wall - splat. Can't help ILs tomorrow. I just don't have even one ounce of energy left right now. I hope I can sleep tonight. I didn't sleep last night due to pain and fatigue. (Do any of you have the phenomena of being too tired to sleep?) Yes, sometimes I just ache - I have found that heat really helps - so I take a hot water bottle to bed with me. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 28, 2013 Author Share Posted March 28, 2013 Katherine, I get chronic pericarditis - it flares up from time to time. I take curcumin (the active ingredient in tumeric which is a natural anti-inflammatory) for it. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted March 28, 2013 Share Posted March 28, 2013 I had a really awesome day Tuesday. Woke up feeling great, and I knew I needed to tackle some big projects that have been put off for too long. I started off cleaning the boys' room, moving beds, pitching junk and somehow found myself at Home Depot buying paint that evening and painting until 1:00 a.m. Their room looks AWESOME now....but (and you all know this was coming)....I could hardly move yesterday. I'm kind of functional today, and I have a big neighborhood potluck dinner I need to attend with the older three kids. Dh is staying home with baby. We haven't taken the kids out all winter because of preemie baby's issues, so we are all looking forward to this....I just hope I can make it across the street and look cheerful. So....as a bigger question....how do you guys handle the good days? I am torn between knowing I need to pace myself and also acknowledging that if I only feel good a few days out of the month that I need to really use those to get stuff done. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 28, 2013 Author Share Posted March 28, 2013 I'm torn in exactly the same way. And most of the time I overdo it. But honestly, even if I don't overdo it, the bad days still seem to come as regularly so I want to get things done. Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted March 28, 2013 Share Posted March 28, 2013 hmm, i havent had a day that 'good' in years. like i said, i struggle with emotional issues, too, which slows me down. but i have had to learn that i have a lot of limits. its been hard - but i'm 47, so i've had lots of time to come to terms with it. plus my sister and my daughter have both been diagnosed with Fibromyalgia, and my sister also with chronic fatigue - i've seen them over do it and really suffer afterwards. i often feel deep shame at being 'lazy' . .. but i dont overdo it. boy, tho, i sure miss those days when I could push myself and just be a little tired the next day. thanks for the welcome/understanding. Quote Link to comment Share on other sites More sharing options...
Cynful Posted March 28, 2013 Share Posted March 28, 2013 Welcome to our new ladies. Not glad you have to be here, but it's a great group (wish they'd get the Groups working again....). Well, I got smacked down with the flu for the last 5 days. Fever since Monday, aches and pains, coughing up a lung, you know fun stuff. Today I finally feel well enough to sit at the computer for a while instead of lie on the couch and watch tv. I know what you mean about others not understanding. I think either some people really just don't ever have much wrong and they really don't understand; or they tend to be ones (like my mother) who exaggerate a little to get out of things and think everyone else does the same. I don't know. I've become the type of person I never liked: I complain too much now. Sometimes it's just all too consuming, the not feeling well and it seems too hard to pretend that everything is alright. I've always hated having anyone know that anything is wrong with me. But life keeps happening and I want to get as much as I can out of the ride so I'm hanging on. :) I'll just have to get more in the habit of not complaining and finding something good each day. Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted March 28, 2013 Share Posted March 28, 2013 oh, i know what you mean about complaining. i check my facebook wall every so often to make sure i'm not too overwhelmingly negative. both my boys are 2E (one officially diagnosed and the other i didnt bother) and my daughter has been having all sorts of breakdowns and i'm just so grateful that my mom took her in - but we arent speaking and i still feel surges of anger when i see her picture . . . no matter what happened to her it was always my fault so i got the brunt of all her anger . . .for the last 10 years. but yeah, i'm just all full of complaints. Quote Link to comment Share on other sites More sharing options...
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