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Green Vixen

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  1. Thanks Jean for starting this group! I've been sick my entire life and it was the reason I was homeschooled as a child. I was finally diagnosed with Chronic Fatigue Syndrome when I was 16 then Fibromyalgia at 21. After my twin pregnancy I started getting a lot of new/different symptoms. My Rheumy's can't seem to agree on a diagnosis but it seems to be some sort of RA/SLE combination. I also have Hypermobility Syndrome, migraines, asthma, allergies, insomnia, osteopenia, and I'm sure I'm forgetting something... Right now I am trying to find the right med combo for the RA/SLE issues. I'm on Plaquenil, Prednisone and Humira injections and am dealing with quite a few side-effects from them. My biggest issue is definitely the overwhelming fatigue. Some days we don't get much homeschooling done but luckily my kids are so little it works out. I'm hoping by the time their a little older I will be feeling better. I just want to add for those of you with onset insomnia I take 25mg of Seroquel and it has been a miracle drug for me. I tried EVERYTHING else and it is the only med that ever helped. I take it about 1 1/2 hours before I want to fall asleep and it works like a charm. Gentle hugs, Marisa
  2. Hi Stardustfairy, I'm sorry your daughter is suffering right now, I hope they are able to get a diagnosis and get things under control for her! What are her symptoms? Do you think she has SLE? What are her biggest problems right now and which ones do you want them to focus on? For example, if mouth sores are her biggest problem make sure they address that and don't get bogged down in her other symptoms. There are usually a couple that are the worst for living with but aren't always the doctors biggest concern. They will probably do a lot of bloodwork on her, I'm not sure if she's squemish so be prepared. Here are some of the more common lab tests they may do if you want to research them before you go in: -ACL - IGM, IGG, IGA -ANA Reflux, ANA A, ANA B (there seem to be lots of different ANA tests) -CBC -Celiac Panel -C3, C4 -C-Reactive Protein (CRP) -ESR -Immunoglobin E -RF -Sed Rate -Vit D Prepare yourself for them not knowing what is wrong with your daughter. You prepare yourself for a certain diagnosis but you aren't always prepared for them say "I don't know". Don't let the doctor rush you through the appointment. Take you questions and write down the answers (you may forget with all the new info you'll be getting). Ask for copies of all lab work and procedures so you have a copy. Ask how long it will take to get the results back, will they call you only if they are abnormal or even if they are normal? Who should you call if you have any questions? Fortunately my children are healthy so far but I've dealt with chronic health problems my entire life. I can't imagine how scared you are right now, I know I would be a mess. Hang in there! :grouphug: Marisa
  3. Sending lots of "approved" thoughts your way!!! I was approved several years ago and it was such an exhausting process, I can't imagine how you've done it for 5 years! Marisa
  4. Sorry to hear about your hip pain, it can be extremely unpleasant! Have you ever seen a chiropractor about it? Is it just one hip or both? Have you had any x-rays done of your hips or SI joint? Was your bloodwork normal? As Kalanamak said Ankylosing Spondylitis is a possibility. Do you know if one of the bloodtests they did was for HLA-B27? That is a common test for AS. If you haven't gone to a chiropractor I would highly encourage you to, at least for a consultation. I separated my pelvis with my twin pregnancy and after several years of PT I finally went to a chiro and got some relief. Working on core stability can also help if your SI joint is out of alignment, contributing to hip pain. I'm glad the NSAID is working at least! Good luck! Marisa
  5. Copying, printing, copying, printing, repeat...

  6. Hi Halcyon, I'm not sure if my oldest son is accelerated or gifted, but he sounds similar to your son in this situation :laugh:. Some of the best advice I have read is from Po Bronson's book "Nurture Shock", particularly Chapter One - The Inverse Power of Praise. He discusses how we sabatoge our kids by praising them in a way that makes them feel powerless. "Emphasizing effort gives a child a variable that they can control...they come to see themselves as in control of their success. Emphasazing natural intelligence takes it out of the child's control, and it provides no good recipe for responding to failure'" I thought the best take home advice for my child was to tell him that the brain is a muscle, and by making his brain work hard it makes it smarter/stronger. He has really responded to that but it is hard when outsiders tell him how "smart" he is. I tell him when something is too easy it isn't making his brain stronger and when something is difficult "oh, your brain must be growing so much right now!". You may need to use more sophisticated language with an older child LOL! There are some great suggestions from previous posters, I will be adding some of those as well! Marisa
  7. It probably depends on how old they are. My boy/girl twins are 4 and would be fine if they got one gift to share (like Mandylubug said, if it can be "shared") and one card. That being said, they get one cake, we sing once, and don't do things separately yet :). As a twin mom I realize getting two gifts can be expensive so don't feel bad if you only get one, I'm sure she would understand. Marisa
  8. Hi Rose, I'm sorry to hear you may have Fibromyalgia :grouphug:! I was diagnosed 13 years ago when I was 21. It was not a huge shock since I had already been diagnosed with Chronic Fatigue Syndrome years earlier and a lot of times they go hand in hand. My major symptoms were muscle pain in my shoulders, hips and legs. I also had some IBS problems that luckily have gone away, though I think I traded them for an autoimmune condition LOL! It is a hard condition to be diagnosed with because it has gotten such a bad rep over the last 20 years. There are still a lot of doctors that think it is "all in your head" :glare:. Now at least there are medications specifically for Fibromyalgia and more is being learned about it every year. How is your sleep? Do you feel refreshed when you wake up? Two things I suggest doing is first making sure you are sleeping well and second getting your pain under control. If you aren't sleeping well you are going to have a hard time getting very good pain management. Please let me know if you have any questions :001_smile:. Marisa
  9. Hi Katie, I have a Mirena and had it placed when my twins were 10 months old and I was still breastfeeding them. I knew we were done having kids but I wasn't quite ready to have my dh get a vasectomy. I had very light periods on it in the beginning but also had them for 2 weeks on, then 2 weeks off, repeat. They eventually started spacing out and became more regular but still extremely light. Almost 1 1/2 years ago I did notice my strings were missing and I guess they migrated into my uterus. So now getting it out may be somewhat of an ordeal but it is in place so I'll worry about it at the 5 year mark :tongue_smilie:. No birth-control method is perfect and some people are going to have unwanted side effects. Like many things you aren't going to know how your body reacts until you try it. Overall, it is a very reliable form of birth control if you or your husband don't want to do anything permanent :001_smile:. Marisa
  10. Hi, Have you looked into Reactive Arthritis? I don't know much about it but some of your symptoms sound like it. I would start with your primary doctor and see if he/she thinks a visit to a Rheumatologist is warranted. In some areas it could take you 3-6 months to get an appointment with one so it could be a long wait. I hope you feel better soon :grouphug:! Marisa
  11. Oh no, not the dreaded unschoolers :willy_nilly::willy_nilly: (sorry I couldn't resist :001_smile:)! I was radically unschooled from mid 1st grade through 8th grade and absolutely loved it! During my 8th grade year I decided I wanted to go back to public school to see what it was like and enrolled for 9th grade at the local high school. The adjustment was very easy and any holes I found in my knowledge I quickly taught myself. If your friend is concerned about her son's math ability I would advise her to first take a big deep breath. Next, I would contact the school her son will be attending and ask to borrow a copy of the math book they will be using in the fall. Then I would figure out what he needed to learn between now and then and work on it every night after work with him. I'm sorry to hear she didn't feel unschooling worked for her family. Hopefully some day she will look back on it with fond memories of the time she spent with her son. Marisa PS Feel free to PM me if you have any questions :001_smile:.
  12. Hi Melissa, Sorry you are going through this :grouphug:! I can't believe your doctor left you hanging like that, hopefully she will call you back and give you more information. Saying you were positive for inflammatory autoimmune disease can mean a very wide range of things. She could mean you have some elevated inflammatory markers or a positive ANA or RF. All of which can mean something or nothing, so try not to worry until you get more information. If she does think you have an AI condition she should refer you to a Rheumatologist who specializes in those conditions. As for your hip pain I saw you have a 1 year old. Have you been having problems since he was born or just recently? Did you breastfeed? Was the x-ray of your hips, pelvis, sacroiliac joint? After having my twins I started having a lot of new symptoms (I already had Fibromyalgia and Chronic Fatigue Syndrome). They ended up diagnosing me with Undifferentiated Connective Tissue Disease, with symptoms of SLE, RA and Ankylosing Spondylitis. The only medication that has helped so far is Prednisone but I just started Enbrel injections so hopefully it will help. I truly hope your symptoms are just from the Vit D deficiency and are not anything else. It is very difficult having an AI condition with little ones. Marisa
  13. I guess it really depends on what you want to have happen during that quite time? Do you want them to nap? - If you do you may have to sit it there, turn off the lights, and "supervise" that they stay in bed, or put them in separate rooms. This didn't work particularly well because then we had two rooms we had to deal with instead of just one. Do you just want them to be quiet and stay in their room? - Again, you may be sitting outside the door for the first week or two and making sure they stay in there (bring a good book :lol:). Do you want them to eventually be in the same room during quiet time? - If so you might as well get them used to it now. Is the biggest goal to let them rest for an hour or so, or to give you an hour with some time for yourself? - If you are wanting some time to yourself then maybe them jumping on the mattress for an hour isn't such a bad idea, they'll be out of your hair and will be getting some exercise LOL! I don't know how well almost 3 year olds will do with quiet time by themselves. They may either need to be napping or playing, and at least when my twins were turning 3 they didn't have a lot of quiet playing activities. Maybe until then you can pad the walls and shut the door :D! Good luck! Marisa
  14. Thank you, what a great resource! I also like http://www.teachersdomain.org if you haven't been there :001_smile:. Marisa
  15. Hi Janie, I am sorry you are dealing with this! I had Diastasis Pubic Symphysis (a complete separation of the pubic bones) with my twins 3 1/2 years ago. It was incredibly painful and I spent 5 months sleeping in a recliner because I couldn't sleep in a bed. The bones eventually went back together after I stopped breastfeeding at 13 months but I still have some pain in that area. I saw 3 different PT's and only the last one really helped. She specialized in female issues and was very knowledgeable about the condition. The first thing she gave me was this OPTP SI-Loc Sacroileac Belt, if that link doesn't work it is on Amazon.com. I pretty much wore that thing 24/7 for almost a year and probably should still be wearing it. What this did for me was stabilize the SI joint and get my muscles to shorten because they had gotten so stretched out they wouldn't hold my pelvis correctly. I also saw a great chiropractor at least every couple of weeks to make sure my alignment was okay. You don't want to stabilize the muscles into a misalignment so it is important to do both at the same time in my opinion. I also did pelvic floor exercises but really the belt and chiropractor were the biggest help. Please let me know if you have any other questions :001_smile:. Marisa
  16. I guess I also have "difficulties" :lol:! I have a lot of health problems and have since I was a child (Fibromyalgia, Chronic Fatigue Syndrome and now a Lupus/Rheumatoid Arthritis type condition). It was the reason I was homeschooled and is part of the reason I am homeschooling my own children. It is a constant struggle dealing with chronic pain and fatigue and then of course the loads of medications I take and their side-effects. Sometimes the brain fog is so bad I am lucky to remember my own name :tongue_smilie:! I've learned over the years, although it is still a work in progress, to just roll with the punches. If I am having a particularly bad day I try to remember tomorrow could be better. I am trying to set up a very detailed homeschooling plan which I hope will make things easier when the brain fog rolls in. I am sorry for everything you have gone through, and are still dealing with. Of course we all have problems but sometimes it is just nice to know we aren't alone in this big world. Marisa
  17. Were you able to discuss your concern about pain meds if you do end up needing a c-section? I have a chronic pain condition and ended up needing two c-sections :glare:. One OB was great and said that people with chronic pain conditions will need longer to heal and therefor to be on pain meds longer. Whereas my other OB was not as understanding. You may want to bring it up now just in case you need a c-section. I wish I would have before hand with my second OB because after leaving the hospital I was in so much pain, exhausted and overwhelmed I could not have a rational discussion with her about pain management. Good luck and I hope baby stays head down for you!!! Marisa
  18. Our situation is a little different because I have twins but some of our relatives send all the kids their b-day presents at the same time. This way my oldest has something to open at the same time as his brother and sister. Plus is saves on ridiculous shipping costs to Alaska :001_smile:. Marisa
  19. I'm so sorry for your previous loss :( I'm glad the spotting stopped Nicole, I know that must have been very scary! I hope the rest of your pregnancy is nice and easy! Marisa
  20. Here are my top picks for twins: -2 carseats -Double Snap & Go stroller -2 baby carriers (I love my Ergos) -2 swings (my twins loved being in swings but I know others who prefer bouncy seats so it kind of depends on your kiddos) -Breast pump (I exclusively breastfeed but I used my pump to help build my supply, or when I had to be away from them) -Boppy (normal one) -somewhere for them to sleep if not co-sleeping :001_smile: -recliner or somewhere else very comfortable to sit while nursing, you're going to be spending a lot of time there :lol:! I personally didn't like the double nursing pillows. They were so wide I couldn't get comfortable no matter how I positioned myself. What I did was sit in my recliner with a Boppy around me. Then used various pillows and blankets to get everyone positioned. Worked great for us! Hope you are feeling well and are enjoying your pregnancy! Marisa
  21. Is there a 7+ button LOL, some weeks it feels like there are more than 7 days in it! I have Fibromyalgia, Migraines, Undifferentiated Connective Tissue Disease (auto-immune disease) and a messed up SI joint/back from a separated pelvis from my twin pregnancy. It's been a bad month and the meds they're giving me to help are causing more problems then they're helping :glare:. I'm seeing my Rheumatologist next weeks so hopefully he'll have some suggestions. :grouphug: to all my fellow sufferers! Marisa
  22. Hi Tanya, I'm sorry to hear you're having stiffness and pain, I know how uncomfortable that can be. I would give your chiropractor sometime to work on you before you start worrying. Who knows what you did to yourself initially to cause all of this. You could have hurt your ankle a little, which could have caused you to twist your hips funny throwing your back out of alignment, etc, etc. One thing happens in your body and the other parts of it compensate in very strange ways :lol:. As for the deterioration and spur I would discuss this further with your chiro. Is this the first time you have had these type of problems? Good luck and I hope you find some relief! Marisa
  23. Hi Luann, We own an AWD Toyota Sienna and I adore it :001_smile:! We live in Alaska where there is snow on the ground 8 months out of the year and it handles very well. We have a truck and have had an SUV and I think the minivan handles similarly to the SUV. I also feel safer in it because it is on a car frame and less likely to flip over than an SUV. It fits 7 and I don't know if it has an option for 8. I don't know how old your kids are but we have three in car-seats in ours. One plus of a minivan over an SUV is the ease of accessibility to the carseats. Good luck in your search! Marisa
  24. Hi Rosie, I read this book last spring when I was deeply concerned about my 2 1/2 year old son and his speech delay. He also had a few quirky behaviors that added to my concern and kept me searching for answers. He was evaluated by our pediatrician, a Pediatric Developmentalist and the school district and all agreed that he is just behind in language. I had been worried about a spectrum disorder or sensory disorder but he was fine in those areas. Is my son one of the children described in the book? That remains to be seen :001_smile:. Since the day he was born he has been extremely alert and curious about his environment. He likes to explore things with his hands, mouth and other senses. As he has gotten older it just seems like he sees the world in a different way then most people. Is that because of a high IQ or a low/normal IQ I don't know. He reminds me so much of my father who is very intelligent and also a little quirky! We also have a lot of bright individuals in our family so it wouldn't be shocking. At this point I am trying to just enjoy my special little boy and help him him in any way that I can. Marisa
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