somo_chickenlady Posted February 15, 2013 Share Posted February 15, 2013 I am doing pretty well today, MUCH better than yesterday, that is for sure. I was tired, sore, and grumpy yesterday...then to have DH think he is being cute by pretending to go to bed at 6pm, right after I got home, on Valentines Day. I wasn't amused in the slightest. Actually, it had quite the opposite affect on me. :/ Link to comment Share on other sites More sharing options...
Spryte Posted February 15, 2013 Share Posted February 15, 2013 Jean, I'm glad you posted about magnesium. I think I'll take some. Have already taken all the migraine meds. Ick. Only 1 meltdown about school today - and surprisingly, it wasn't me. :tongue_smilie: Thank goodness we're done for the day. Anyone with both Addison's and migraines? Would you stress dose for a migraine? I never know if I should, so I don't, but wonder if it might help? Link to comment Share on other sites More sharing options...
somo_chickenlady Posted February 15, 2013 Share Posted February 15, 2013 I do stress dose for them, but I get ocular migrains so I'm not sure if that makes a difference. I have seizures (had one this morning after my last post actually...the first since Cristmas) and I don't stress dose for those, though. Link to comment Share on other sites More sharing options...
Lisa in SC Posted February 15, 2013 Share Posted February 15, 2013 Lisa, does magnesium help you? I've heard that it can help both migraines and muscle pain. I'm glad that you get to have a long weekend. Thanks, me too about the long weekend! It doesn't help much but I take it. :) Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 15, 2013 Author Share Posted February 15, 2013 Today was a better day. But I think I overdid it. Oh well, it was good while it lasted. . . . Link to comment Share on other sites More sharing options...
eight_gregorys Posted February 15, 2013 Share Posted February 15, 2013 Having a to do list bigger than my energy level. Feeling like a failure because I can't homeschool the way that I really want to - again because of my energy level. I totally understand this. I struggle with the same thing. I am very ambitious, but the fatigue and lack of energy keep me from doing all that I would like to. Others that I know with chronic health problems grieve for the bodies they use to have. It is very hard to just accept that this is the way things are and there is nothing you can do about it. Especially since it feels like all this happened over night. For me, I have also added more diagnosis as time as went on...which is common with autoimmune diseases. For me it was Hashimotos, then fibro, then lupus, and then rheumatoid arthritis. I just feel like....wasn't one enough. I have six children, how can I deal with all of this? I try to not think of it that way, but sometimes it gets the best of me, yk? I saw someone post about having health related anxiety. I have had issues with that as well, especially when I'm battling depression, which happens from time to time. There is nothing like being ill and a hypochondriac. I'm getting past that though. Support groups can really help, as I'm sure many people don't have someone IRL that understands what you are going through. The problem with that for me was that most of the time I was too tired or ill to go. Lol It has all been very humbling. I've spent a lot of time on my knees before God. I think I'm coming to terms with everything. Somedays are better than others. It feels nice to share this with others because sharing with my husband makes him feel sad and helpless and I hate that. The rest of our families just don't really understand. They don't understand that the sun literally makes me sick and that I don't choose when am I sick. I try not to commit to things until the last minute because I have no idea if I will be able to do things. I've learned to just be ok with disappointing people. There's nothing I can do about it and its disappointing to me, too....which I don't feel like they understand. It's just hard to be sick, but not LOOK as sick as you actually are. I'm sure many of you can understand what I mean by that. Link to comment Share on other sites More sharing options...
eight_gregorys Posted February 15, 2013 Share Posted February 15, 2013 A lot of people don't 'get' chronic illness. Even my mum and dh think on some level that if we just find the right dr or treatment, or make the right lifestyle adjustments, there will be this magical time when I get better and it all goes away. I don't think they like to consider what 'progressive' means. The nice thing for me is that my dr's are so supportive. They consider me as doing incredibly well through my own efforts at staying as healthy as possible. They understand how much work it is to maintain a 'normal' level of function. And they know that things like the occasional sleep in or someone else cleaning the bathroom once in a blue moon isn't really what it takes to support someone with a chronic illness. Today I am very grateful for my eldest dd. I came home from a field trip yesterday already exhausted and then had to teach for two hours. Dd made dinner AND washed all the dishes...I could have kissed her feet.... My oldest dd is almost 15 and she is very sweet and helpful, too. I'm glad that you have a dd that helps look after you. Link to comment Share on other sites More sharing options...
rieshy Posted February 15, 2013 Share Posted February 15, 2013 I'd like to join. I have 7 children but my 6th (he's in first grade) has a fatty acid oxidation disorder and a carnitine deficiency. He's been in the hospital twice since New Year's because normal illnesses cause his metabolism to crash. My biggest struggle (beyond day to day medical care and trying to avoid the hospital) is knowing how hard to push him. His energy levels are so unpredictable. He might be able to run around the park and do his school work one day (looking like any other 6 yo) then the next day he might have to eat off and on all day long and have trouble holding his head up straight to do his school work. I get somewhat weary of people asking me if he feels better after a hospitalization because I know they just really don't get what an "invisible" disability is. Yet- I know people mean well. Link to comment Share on other sites More sharing options...
tex-mex Posted February 15, 2013 Share Posted February 15, 2013 I'd like to join. I have 7 children but my 6th (he's in first grade) has a fatty acid oxidation disorder and a carnitine deficiency. He's been in the hospital twice since New Year's because normal illnesses cause his metabolism to crash. My biggest struggle (beyond day to day medical care and trying to avoid the hospital) is knowing how hard to push him. His energy levels are so unpredictable. He might be able to run around the park and do his school work one day (looking like any other 6 yo) then the next day he might have to eat off and on all day long and have trouble holding his head up straight to do his school work. I get somewhat weary of people asking me if he feels better after a hospitalization because I know they just really don't get what an "invisible" disability is. Yet- I know people mean well. I hear ya... :grouphug: It drives me batty when people look at myself or my son (we have a OTC Deficiency in the Kreb's Cycle in our liver) and say, "How can anything be wrong with you? You look great!" Link to comment Share on other sites More sharing options...
rieshy Posted February 16, 2013 Share Posted February 16, 2013 Tex-mex is your son's disorder classified under organic acidemia disorders? Link to comment Share on other sites More sharing options...
eight_gregorys Posted February 16, 2013 Share Posted February 16, 2013 It killed me yesterday, my MIL is a saint and deals with chronic pain herself so as a gift she sends a cleaning crew to my house once a month to do all the heavy scrubbing. On the way out to the mail box I over heard (a loud) conversation about how lazy I must be to not do my own cleaning :( people just don't see it. Sounds like people are jealous that you have cleaning crew. I definitely am. :) Although my family is always very helpful. I'm glad that you have someone who is really supportive of you and is helpful. I wish people could understand how hurtful comments like that are. I would much rather be able to clean my own home and not have to have help....then to be chronically ill. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 16, 2013 Author Share Posted February 16, 2013 I hope that everyone gets good sleep tonight. Tonight was stressful at Zumba - not the Zumba itself but confrontations with teens that meant that I had to leave twice (part of my formal duties as an assistant) to get help from the front desk. I'm all wound up now and it's 10 pm. That does not bode well for my night. I'll take my usual melatonin and 5-HTP and magnesium but I'm afraid of an adrenal storm. Link to comment Share on other sites More sharing options...
tex-mex Posted February 16, 2013 Share Posted February 16, 2013 Tex-mex is your son's disorder classified under organic acidemia disorders? Howdy! :001_smile: From what I understand from our Metabolic Geneticist Specialist at Texas Children's Hospital in Houston... we are like "distant" cousins. Not the same. But it looks like we do share similar symptoms when under illness or stress -- and have to be on similar diets? For our Disorder, a liver transplant is needed if meds and diet do not help. Looks like we both have ongoing care that requires the support of knowledgeable nutritionists and physicians. And frequent monitoring of growth, development, and biochemical parameters is essential. In our Urea Cycle Disorder - OTC Deficiency, and others later in the cycle, glutamine or orotic acid may be identified in the urine organic acid profile, for example in Hyperammonemia. My son was in a FDA Drug Study a couple of years back and the test results from that study showed great implications that the drug could be used to help Maple Syrup Urine Disease (one of the Organic Acidemias in your group). Link to comment Share on other sites More sharing options...
swellmomma Posted February 16, 2013 Share Posted February 16, 2013 It was a productive but rough day for me. I had a ton of running around to do, starting with leaving the house at 10am to drive an hour away to get the last 2 boxes in the store, of the laminate I used in my livingroom because it got damaged and I have to replace several rows), picking up dance stuff, take girls to dance, boy to work, pick up pet supplies, bring boy home from work(and girls), set up new pet tanks, clean all others. BUT I could barely open my eyes today. I was so exhausted all day it felt like I was dragging myself through mud. I had youngest dd playing with a whistle in the car for the drive so that I wouldn't fall asleep at the wheel. I absolutely had to go today because I could not get them saved and if those 2 packages sold I would have to start completely over in my livingroom with a completely different laminate. and kids had to get to their responsibilities etc. So whistle blowing from the back seat it was. Coffee didn't even work today. Normally I can drink enough to be functional but no matter how much I drank of it today I remained exhausted, and sore. Have to be up early to take son to work tomorrow, hoping that if I don't have more energy at least the coffee works. Off to bed now. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 16, 2013 Author Share Posted February 16, 2013 I had never thought of whistle blowing in the car. My dd kicks the back of my seat if she sees me nodding off at the wheel. A whistle would save the car some wear and tear! I hope everyone (including me) can get some rest and some relief this weekend. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 17, 2013 Author Share Posted February 17, 2013 Anyone else have problems with massage? I had one yesterday and I was in pain all night and am still in pain! It does some good though for my muscles which is why I put up with it. Link to comment Share on other sites More sharing options...
shanvan Posted February 17, 2013 Share Posted February 17, 2013 Anyone else have problems with massage? I had one yesterday and I was in pain all night and am still in pain! It does some good though for my muscles which is why I put up with it. Jean, I have had one massage since my fibro diagnosis. Afterward I had one of my worst fare ups ever. Yes, I think I have problems with massage. I keep thinking I should try again.....but I chicken out. Link to comment Share on other sites More sharing options...
Impish Posted February 17, 2013 Share Posted February 17, 2013 Just popping in. RSD here. Flare up Fri, still touchy today. Link to comment Share on other sites More sharing options...
eight_gregorys Posted February 17, 2013 Share Posted February 17, 2013 Anyone else have problems with massage? I had one yesterday and I was in pain all night and am still in pain! It does some good though for my muscles which is why I put up with it. It is hit or miss for me. There are times it has been helpful and there have been times where it made the pain worse. A super hot bath helps me the most, but it makes me tired at the same time. Its one of those things where I choose to reduce pain and pay the consequences or just try to suck it up. It feels like I can't win sometimes. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 18, 2013 Author Share Posted February 18, 2013 Kind of corny but hopefully encouraging at the same time! http://www.youtube.com/watch?v=CmyUkm2qlhA Link to comment Share on other sites More sharing options...
Cynful Posted February 18, 2013 Share Posted February 18, 2013 I'm in too. I have psoriatic arthritis and I get migraines. I feel kind of bad posting since so many are dealing with so many issues at once. However, this definitely affects life, especially with a 2 year old. I'm having a major flare right now and I am back on Prednisone (3rd time in the last 4 months) which is helping a bit but then more side effects. I also have Restless Legs Syndrome and between pain and a 2 year old and RLS, sleep doesn't always come easily which makes the next day terrible. I'm working on going low carb right now because the Prednisone has put on 15 pounds and I'm trying to lower gluten also. At this point I feel losing weight is more important than no gluten but I don't know. As everyone, I have good days and bad days and some days require lots of pain meds. My oldest son was a preemie and has many learning disorders and OCD/Anxiety. My daughter is AWESOME and I couldn't do this without her but I feel bad that she has to help so much. My 2 year old has some type of allergic disorder to all food and is still on an elemental formula. Link to comment Share on other sites More sharing options...
Cynful Posted February 18, 2013 Share Posted February 18, 2013 I was diagnosed with psoriatic arthritis when I was 25. I can't think of a joint it hasn't affected, including my jaw at times. It's under control now but for many years when the kids were young it was very painful. I'm not sure how I managed. We just stumbled along. Kids had to help a lot. I've never met anyone else with psoriatic arthritis before - I'd love to know what you do to help: meds, vitamins, etc. If you don't mind sharing. I'm just waiting for my appointment with a rheumy. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 19, 2013 Author Share Posted February 19, 2013 How's it going today? Link to comment Share on other sites More sharing options...
TravelingChris Posted February 19, 2013 Share Posted February 19, 2013 I have been flaring badly for over a month now. Currently I am dosing myself with medrols my orthopedist prescribed (a dose pack, but I am spreading them out to try and weather through this), also have Lortabs which I am religiously taking every four hours while awake plus the Skelaxin every six hours and tramadol. I am also taking my DMARDS- plaquenil and half dose of Arava. I am firing my rheumatologist. In January, he told me I should move to Arizona. No one can believe that he offered that as a solution to my flare- no increase in my dmard which is at half dose, no Medrol dose pack or low dose prednisone, no talk of any new meds- hey I am fine- even though I can barely function and am in horrendous pain. Well he did offer to give me a bone scan which I did. I didn't hear back from him but decided to call last week and get blood results (I have blood tests monthly because of the Arava) and a written copy of my bone scan results. I picked them up on Tuesday and on Wednesday I saw my internal med doctor. He was flabbergasted- the bone scan report shows that I have arthritis in many places including my cervical spine area which has been spasming for months and months. Including my patellas- where I have been complaining about pain and motion since Oct of 2011. I am so angry that he ignored these things and my arthritis has gotten worse since I am not swollen and red. Well I am = just not twenty four hours a day, unlike the pain. My internal med doctor gave me a referral to another rheumatologist and I also see the pain specialists this Friday. To just survive till then- it hurts so much. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 19, 2013 Author Share Posted February 19, 2013 Chris, I hope these new referrals are the start of something good for your health. I'm having one of those days where everything goes wrong. It is hard enough when everything goes right but it goes wrong. . . Link to comment Share on other sites More sharing options...
Parrothead Posted February 19, 2013 Share Posted February 19, 2013 I'm sorry it is going so badly for you Jean. Link to comment Share on other sites More sharing options...
Parrothead Posted February 19, 2013 Share Posted February 19, 2013 Today is better. No joint pain. It felt like things are getting worse. I had pain in both hands, both shoulders, and both knees this weekend. I know there were joints that didn't hurt such as hip, neck, wrists, ankles but just those six had me feeling like my entire body was riddled with osteoarthritis. Link to comment Share on other sites More sharing options...
shanvan Posted February 19, 2013 Share Posted February 19, 2013 I have been flaring badly for over a month now. Currently I am dosing myself with medrols my orthopedist prescribed (a dose pack, but I am spreading them out to try and weather through this), also have Lortabs which I am religiously taking every four hours while awake plus the Skelaxin every six hours and tramadol. I am also taking my DMARDS- plaquenil and half dose of Arava. I am firing my rheumatologist. In January, he told me I should move to Arizona. No one can believe that he offered that as a solution to my flare- no increase in my dmard which is at half dose, no Medrol dose pack or low dose prednisone, no talk of any new meds- hey I am fine- even though I can barely function and am in horrendous pain. Well he did offer to give me a bone scan which I did. I didn't hear back from him but decided to call last week and get blood results (I have blood tests monthly because of the Arava) and a written copy of my bone scan results. I picked them up on Tuesday and on Wednesday I saw my internal med doctor. He was flabbergasted- the bone scan report shows that I have arthritis in many places including my cervical spine area which has been spasming for months and months. Including my patellas- where I have been complaining about pain and motion since Oct of 2011. I am so angry that he ignored these things and my arthritis has gotten worse since I am not swollen and red. Well I am = just not twenty four hours a day, unlike the pain. My internal med doctor gave me a referral to another rheumatologist and I also see the pain specialists this Friday. To just survive till then- it hurts so much. Well, I am flabbergasted too! I cannot imagine how you are managing to function at all. :grouphug: Chris, I hope these new referrals are the start of something good for your health. I'm having one of those days where everything goes wrong. It is hard enough when everything goes right but it goes wrong. . . I'm sorry, Jean. :grouphug: I had a rough day yesterday, but it was mostly brain fog and emotions, though I felt like I was getting sick (sore throat, sinus pressure, all the usuals). Yesterday and today the pain is in my hands and it makes typing and writing hard. I recently found out that my B12 levels are low. My doctor gave me a lecture about taking the supplements (b/c I was only remembering sporadically) and how many problems can arise from b12 deficiency. After arriving home I did a little research and realized maybe we should be looking into why all of a sudden I've got a problem with b12. There's no evidence for Lupus or other auto-immune disorders currently, so I'm lumped into the fibro diagnosis, but I sometimes wonder if there is something brewing and if I should see a rheumatologist. I didn't ask my doctor about a referral, but she said she sees no reason at this point to continue blood tests for ANA and other auto-immune markers. (She is retesting for B12 in a couple of months.) I agreed with her, b/c I'm sick to death of testing and mostly I function well, but sometimes I wonder if I'm right. I just don't feel like I can deal with all the testing and doctor visits again. Link to comment Share on other sites More sharing options...
TravelingChris Posted February 19, 2013 Share Posted February 19, 2013 SO the auto dealership called and we don't get the auto part until tomorrow so I suffered all morning for no reason. ( I don't want to drive with all three medications - two I am fine with but three probably a bit too much). So now I have taken all three but won't drive until one wears off. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 19, 2013 Author Share Posted February 19, 2013 Chris - I'm sorry that you had to suffer for nothing. I hope the meds kick in really soon. Chucki and Shannon - I'm ok. I'm just whining. I'm having chest pain this morning but before anyone panics I know it is blood pressure and muscle related and have taken my meds. I've cleaned part of the kitchen. My sister helped by talking to me on the phone - which distracts me. Dd just came and told me that she's getting another migraine so I've dosed her with her meds and her electrolyte solution. Link to comment Share on other sites More sharing options...
TravelingChris Posted February 19, 2013 Share Posted February 19, 2013 Yes they did and even though I still have pain- I am listening to Whole Lotta Love loudly so I can actually hear it and it makes me happy. Now a dancing song. See I love to do exercises to music and I love to dance but that is why I want a relief-- so I can actually exercise moderately, work moderately, volunteer moderately, garden moderately, etc. It is all about moderation for me as someone who is living with chronic illnesses for over 25 years. But the fired rheumatologist didn't understand or care. Link to comment Share on other sites More sharing options...
Cynful Posted February 19, 2013 Share Posted February 19, 2013 I guess its coincidence, but it seems like alot of us have flares going on right now. I'm having terrible muscle spasms through my back up to my head and my chest. I think it's from the Prednisone. I hate it, I finally feel somewhat better from the Pred and now this. I can't move and had to take Robaxin and Tramadol just to sit here. Chris, that's all I want too - to live in moderation. I don't need the world, just to enjoy the one I'm in. Link to comment Share on other sites More sharing options...
shanvan Posted February 19, 2013 Share Posted February 19, 2013 Whine away, Jean. I did a lot of whining to my mother this morning. Had a nice little pity party. It was along the lines of "if only the people who live with me would just do the things they know they are supposed to do (and not wait for me to ask 3 or more times or check on them) I would not feel so tired." Also, I'd like for them to stop getting mad at me when I remind them. Oh, AND stop telling me to relax. I would love to relax. It's not relaxing to know that most of the people around you are counting on you to be their brain when you feel like you don't really have enough brain for your own functioning. My mom told me i needed a hair cut to take off some of the weight I'm feeling. :laugh: IDK, it's a weird idea, but I feel a little better (mentally) after talking to her. Chris, sorry about the auto dealer. Hope you are getting some relief from meds soon. Cynthia, just the mention of Prednisone gets me upset. I don't do well on it at all. Hope some of these flares lift soon! Link to comment Share on other sites More sharing options...
swellmomma Posted February 19, 2013 Share Posted February 19, 2013 Feel so sick today. Not sure if it is tied to the extreme exhaustion of the last 2 days or if I am coming down with something more acute. When I hit too much exhaustion but keep pushing myself I get nausea so it could go either way. Kids are being horrid today and I am trying to move all our school books out of the girl;s room and back to the kitchen and that is physically tiring and making me feel worse. Given yesterday's dizzy spells etc I am assuming the start of a flu on top of everything else. Of course Tuesdays are our busiest days around here. Link to comment Share on other sites More sharing options...
shanvan Posted February 19, 2013 Share Posted February 19, 2013 Feel so sick today. Not sure if it is tied to the extreme exhaustion of the last 2 days or if I am coming down with something more acute. When I hit too much exhaustion but keep pushing myself I get nausea so it could go either way. Kids are being horrid today and I am trying to move all our school books out of the girl;s room and back to the kitchen and that is physically tiring and making me feel worse. Given yesterday's dizzy spells etc I am assuming the start of a flu on top of everything else. Of course Tuesdays are our busiest days around here. Interesting....I've been having dizzy spells too, and they aren't one of my usual symptoms. Link to comment Share on other sites More sharing options...
TravelingChris Posted February 19, 2013 Share Posted February 19, 2013 I do tend to get my flares more consistently in fall and winter. I will have the new rheumatologist or my internal medicine team check my Vit d level. Link to comment Share on other sites More sharing options...
somo_chickenlady Posted February 19, 2013 Share Posted February 19, 2013 I had a pretty good seizure yesterday, and an even worse one today. I don't convulse so it doesn't affect what I'm doing when it happens, but they make me feel terrible. Nauseous, dizzy, hot, headache, and the bad ones affect my vision slightly. Afterward I am completely wiped out and all I want to do is sleep, but since I'm at work I can't. :( Link to comment Share on other sites More sharing options...
somo_chickenlady Posted February 19, 2013 Share Posted February 19, 2013 I can't edit on the mobile app...forgot to mention that up until yesterday I hadn't had any since Christmas time. When I go that long I tend to get them in clusters. I'm surprised I'm not getting multiple per day, so I guess I should consider myself lucky. :/ Link to comment Share on other sites More sharing options...
shanvan Posted February 19, 2013 Share Posted February 19, 2013 I had a pretty good seizure yesterday, and an even worse one today. I don't convulse so it doesn't affect what I'm doing when it happens, but they make me feel terrible. Nauseous, dizzy, hot, headache, and the bad ones affect my vision slightly. Afterward I am completely wiped out and all I want to do is sleep, but since I'm at work I can't. :( :grouphug: Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 19, 2013 Author Share Posted February 19, 2013 ;I'm sorry, Kara. Do you know what causes them? Link to comment Share on other sites More sharing options...
somo_chickenlady Posted February 19, 2013 Share Posted February 19, 2013 They are partial complex seizures, and the doctor never figured out what causes them, and the medication he put me on never stopped them (it just doped me up so much I couldn't drive), so I just have to deal. Thankfully I don't get them as often now as I did when they first started 3 years ago. They tend to happen most often when I am really stressed out. I am a nanny for 13 week old twins (I hope it is okay that I am still posting here!), and one of them has been screaming non stop all day since Thursday, so I have been a bit stressed. LOL Link to comment Share on other sites More sharing options...
LostSurprise Posted February 20, 2013 Share Posted February 20, 2013 Have you tried a lot of different medications Kara? They've been coming up several new ones over the last few years and not every one has the same side effects. I hope its gone now and you can rest. I haven't been in here before. I'm okay...mostly, but my youngest son has Lennox-Gastaut Syndrome, a severe. progressive, childhood epilepsy. Its the kind of thing where most of the kids with it end up with severe retardation eventually and quite a few lose basic physical things like talking, eating, walking because of the number of seizures. Its medication resistant. He's doing really well so far. He's probably in the top 10% for the diagnosis, but there's a special diet, and he doesn't eat, that makes the seizures worse, and after 4 years I can see the developmental delays. He's probably progressed 1 year for the last 5. We're working really hard on reading this year and he's had a few small breakthroughs. Anyway, tired today. Spent 4 hours doing 1.5 pages of school. I'm baking a cake. Then I'm going to watch mindless television while eating said cake. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 20, 2013 Author Share Posted February 20, 2013 I'm sorry, Sadie. Do you have to go immediately? Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 20, 2013 Author Share Posted February 20, 2013 I've had chest pains and moderately high blood pressure all day. Don't get worried - it is from tight inflamed chest muscles and is not my heart. I just took my curcumin (a natural anti-inflammatory) to try and ease the inflammation. I'm still having chest pains and feel chokey now at midnight. This is not unheard of for me. I've gone to the ER numerous times with the exact same symptoms and have been cleared every time. They keep telling me it is muscular or hormonal. I can now tell it is muscular since the muscles across the top of my chest are very sore. And I'm fairly sure it is hormonal too because it always happens right at that TOM. So I'm not getting all worried about it any more. Link to comment Share on other sites More sharing options...
somo_chickenlady Posted February 20, 2013 Share Posted February 20, 2013 I'm so sorry Sadie!! Jean, that sounds painful. :( How long does it normally last? Link to comment Share on other sites More sharing options...
tabinfl Posted February 20, 2013 Share Posted February 20, 2013 Thankfully my kids are healthy, but I was diagnosed with RA shortly after my youngest was born (after several years of suspicion/denial). Like most people, I saw "arthritis" and thought it wasn't really a big deal, just some sore hands and feet. I'd been diagnosed some time before with hypothyroid, and that has been a non-issue with a pill every morning. I had no idea how much more RA would affect my life. Pain in nearly every joint, tendonitis, fatigue, and the unpredictability of it all really throw a monkey wrench into our plans. My vision of homeschooling was lots of field trips, travel, and other activities I could turn into education. The reality has been much more limited. Even when I can get out and do things, I pay for it over the next several days. The pain has robbed me of so much patience and grace I'd hoped to use in dealing with my children. Losing our nanny last fall (she opted for full-time culinary school, which is GREAT for her, but not so good for us) has put a lot more of the workload on me, on top of beginning full-time homeschooling (the kids went to a P/T preschool until last spring). Anyway, it would be nice to have a place to vent, but even more a place for support and encouragement when I feel like throwing in the towel. Link to comment Share on other sites More sharing options...
eight_gregorys Posted February 20, 2013 Share Posted February 20, 2013 Have any of you ever read The Spoon Theory? It helps explain to friends and family just what a day in your body looks like. I have shown it to several people close to me, including my husband, and I could tell it really made an impact and helped them understand what it's like to live with "an invisible illness". My husband is so supportive, but sometimes I can tell my illnesses wear him down, too. He wants to "fix" me and can't. I think it helped him understand that relate to me better and it helped me understand that I'm not the only one who grieves....because it is hard for him, too. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ Let me know what you think. Link to comment Share on other sites More sharing options...
eight_gregorys Posted February 20, 2013 Share Posted February 20, 2013 Thankfully my kids are healthy, but I was diagnosed with RA shortly after my youngest was born (after several years of suspicion/denial). Like most people, I saw "arthritis" and thought it wasn't really a big deal, just some sore hands and feet. I'd been diagnosed some time before with hypothyroid, and that has been a non-issue with a pill every morning. I had no idea how much more RA would affect my life. Pain in nearly every joint, tendonitis, fatigue, and the unpredictability of it all really throw a monkey wrench into our plans. My vision of homeschooling was lots of field trips, travel, and other activities I could turn into education. The reality has been much more limited. Even when I can get out and do things, I pay for it over the next several days. The pain has robbed me of so much patience and grace I'd hoped to use in dealing with my children. Losing our nanny last fall (she opted for full-time culinary school, which is GREAT for her, but not so good for us) has put a lot more of the workload on me, on top of beginning full-time homeschooling (the kids went to a P/T preschool until last spring). Anyway, it would be nice to have a place to vent, but even more a place for support and encouragement when I feel like throwing in the towel. I understand what you mean about not thinking arthritis was a big deal. I was diagnosed with RA 18 months ago, but also was diagnosed with SLE (lupus), fibro, and Hashimotos 7 years ago, when I was 24. While I had problems with extreme fatigue and muscle pain, it is nothing like what I have experienced with the RA. The damage in my hands is already quite apparent. I'm only 4th med and am just plain sick of it. I finally broke down and went to pain management because I sure nobody in my family could tolerate me anymore. The pain was turning me into a wretched witch. I'm doing a little better now, but sometimes it gets old. I hope that you are doing well. Do your best to just have fun with your kids.....even if its reading on the sofa together or taking an afternoon nap in your bed with them. It's what my kids seem to remember the most. Sometimes one of my boys will even tell me...."Mom, I think it's time for us to rest together". It's very sweet and I treasure it. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 20, 2013 Author Share Posted February 20, 2013 Andrea, Yes! I think it was Helena on this board who introduced me to the spoon theory. It made so much sense to me and has been something I've been able to use to explain things a little bit to others. And yes, my husband is supportive too, but it wears on him - esp. after 20 years. Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 20, 2013 Share Posted February 20, 2013 Sadie--Can you go in for a line and then have home health or someone come change the bags? I realize sometimes they want you there (I did a 3 week stint in Nov) but if it is *just* abx, usually there are flexible options. Dh would come and drop a kid off for an evening of discussing readings he had done at home. We also did a lot of facetime chats about schoolwork. Link to comment Share on other sites More sharing options...
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