I have lived with JRA all my life,I was diagnosed with it at 18 months. I'm going to be 30 this year and I don't have a family of my own, which really gets to me. I'm pretty sure that one of the biggest reasons my last engagement ended was due to the fact that he couldn't handle all of my medical issues. I also have an eye disease - which doesnt affect me severly right now but it definately adds to my hurdles. About 3 months ago I got really really sick and was having random allergic reactions to many things, I thought I was having a heart attack a couple of times-which they are attributing to my panic attacks, I've been in and out of emergency rooms for everything from allergic reactions to heart flutters and pains, severe neck pain, my head and (brain) feeling like they are swelling severly and never stopping (but they weren't)and my face swelling significantly, a UTI for the first time in my life and a kidney infection-both are better now, I've also had thrush and many other symptoms I've never experienced before. I now have a neurologist who says my brain is fine, well at least something is lol! and I have yet to see my rheumatologist, I see her the 23rd, and haven't seen her in 6 months, but couldnt get in any earlier. My PCP is awesome and has been trying to figure out what is going on with me, I was so severely sick, finally she checked me for Lupus and the test-dont know what its called but its a very specific one, came back positive. Also I have the butterfly rash on my face and have for at least a year now. She thinks that because I got behind on my Arthritis medication (Simponi) the lupus flared up so much and became undeniable. I've had 4 EKG's and all were great they said my heart is strong so that's a plus. And I'm no stranger to autoimmune diseases but Lupus is new to me and although I knew some about it, I guess until reading about all of the issues everyone here are dealing with, I never realized how devastating this disease can be. I'm feelng overwhelemed and staying positive most days, as I've mentioned before I'm a christian and draw strength and wisdom from the Bible and my spiritual walk with God. But that doesnt mean that I dont have terrible days where I wake up thinking....how did this happen? Not one autoimmune disease but now two plus an eye disease and tendonitis in my ankles...and who knows what else they will find...I'm remaining hopeful that I'll find something will work for me after meeting with my rheumatologist, but I'm also very scared and haven't really emotionally connected with the fact that I have this second terrible autoimmune disease and that its going to affect my life significantly maybe even more than it already has. I'm not sure about all of the foods to avoid, I have been doing research but am still scared to eat different foods because they may spur a flare up. I am adjusting my diet to "Lupus and Arthritis Friendly" and going to start taking more supplements. I currently take fish oil and know that I need Vitamin D and a multivitiamin...are there any I should stay away from? And are cauliflower and broccoli triggers for anyone? I know that tomatoes and potatoes are main triggers for most. Sigh....its been a rough week and I'm keeping my attention focused on my many artforms that I love, but not being able to work, and be independant is really getting to me....not to mention dating....I dont have the energy!! However, I dont want to be alone forever either lol. I have my family and they are awesome and my friends are just as awesome but I really want that special someone and at the same time I feel like ... who will really be able to handle all of this medical baggage that comes with me? And is it fair to place that burden on someone else in my life? I'm trustig God to provide in every area of my life, but I am struggling with it a bit. Being new to Lupus,I'm still struggling with acceptance of it and knowing what to expect, what to do and what not to do, what else is there besides steroids? I am already on prednisone 5mg and like I stated before Simponi for my JRA. But I would like to do as many natural things as possible, I've had enough meds and side effects over the years to last me a lifetime lol. Through all of this I am helping my niece who had a major injury to her knee and cant walk on it, and due to complications she missed a lot of school and fell way behind. I am doing online classes with her so I am administrator, teacher, mentor, and sometimes the Lunch lady haha :) I love her and I'm glad that I can help, butsometimes its alot, the fatgue sets in and is like carrying around so much dead weight! I'm stressed, my family is not healthy at this time lol. Mom and Brother have a corneal disease and have to get cornea transplants and both are due for one, and my uncle has just recovered from a very serious attack of Pancreatitis, he almost died and I ended up quitting my job temporarily to take care of him full time. I was his nurse and nutritionist and taught myself everything. I love him and I'm glad I could help but I also know that it took a big toll on me, at the same time i was caring for him, my grandmother got sick and wanted me to take care of her until she passed. Well I couldnt say no! I did and loved the moments I spent with her but watching her die while in my care was so difficult especially because just a year before I lost my other grandmother, whom I also took care of until she passed. This has been the last 3 years of my life and the panic attacks were out of control. They still are sometimes but I'm dealing with them through breathing techniques and green tea, its very calming with no side effects like I had with Xanex. I feel like my life just keeps spiraling out of control and I'm just wondering when I'm going to get a break. And due to my allegies being so out of control right now I can't stay off of the meds long enough to go for allergy testing lol. However, on the bright side of all of this, I have very extensive medical records haha and my heart is strong, I've got the panic attacks under control mostly, pap was normal and HPV was negative. Brain is fine, lungs are fine, I'm still mobile - with alot of pain but its still a plus, and though I have brain fog,I'm still able to teach, carry on intelligent conversations....most of the time haha and I'm being closely monitored by several specialists and my PCP! I know this is a very random post, but its how my mind works lol. I would appreciate any infomation and feedback!
um fatgue was supposed to be fatigue* lol
Well I’m still pretty new to the diagnosis as well. Some foods that I’ve had issues with are alfalfa sprouts, camomile tea, and foods with a lot of garlic. I’m glad that you too find strength in the bible. It’s very important to focus on the positives. Often times we get so focused on the negatives that we forget about all the great things going for us. I’ve found a lot of support from a lot of great people on this site. Brain fog haha I’ve had such a huge struggle with this but I do know there are better days.
Brittany
Hi
pardon me for this, but when is someone going to take care of you. You need to take care of yourself first even before you can help someone else. Keep good records for yourself. all of your medical professionals need to know your full illnesses and meds. I wouldn't take any over the counter meds without drs knowledge.
We're all here for you.
stay positive.
Cindy
Bless your heart.....you need to take care of YOU!!! I pray that you have the strength to say NO and focus on your health right now. Continue your walk with the Lord and He will guide you. Stress is the last thing that you need and it affects your illnesses. Do what you are able to do each day and nothing more.
HUGS!!!
Lori
I am really glad that you are able to keep such an up attitude. It's difficult when things just seem to keep piling up. It certainly is common that most people don't understand much about this disease until it affects them...even families tend to go only as far as the information on the Lupus Foundation website. It's so clinical that it's an absolute yawn. I have found that this site is truly one that allows you to ask questions, vent, share info, all without the fear of judgment or attitude.
We try to maintain positivity and share what has worked for us.
There are many Super groups under the groups tab...fee free to join any.
I am a former educator as well, so I understand the frustration of no longer being able to share your knowledge.
As to the herbal medicines, they are medicines as well. And while we have many people that use only herbal or a mix of Eastern and Western medicines, it's important that you inform your doctor as many things may cause unexpected interactions.
If, indeed, your diagnosis is Lupus we are here to help you and will continue to be as long as we need you.
If ever you need to vent in private you can PM myself or anyone other moderator. It's also helpful to send out friend invitations. This is very helpful in keeping the feelings of isolation at bay.
Welcome to our family,
DeAnne
Tomatoes and potatoes? Never heard that. I wat one or the other everyday. I hope things get better. And keep your head up you just haven’t meet the right person to love you. Besides you. Yet but you will
Bless you for helping your family so much. 3 years of this and your fiancée walked? Perhaps that was part of the reason and not just your health issues? That is a lot for your significant other to accept and it sounds more like you are being taken advantage of by asking you to put your health even more at risk plus quitting your job? I have helped my family and friends a whole lot but I have to take care of me first and then my husband and children (adults now with their own children) after that. I may be coming on a little strong here but there was a time where I was a lot like you are now but not for even a year and my husband and my parents had a come to Jesus meeting with me. I was putting my marriage in jeopardy by being a "do gooder". Think about it Vintage Alicat. Maybe talk with a counselor for a short time and get perspective on all this. Home bound teachers are available in many school systems but I am not sure all systems. One of my sons was out for an entire semester and a wonderful woman came to the house everyday for a few hours and kept him up with his high school work. In fact we all became friends until we moved, It is an opportunity for your niece to grow in a different way and she could have a lot of positive impact for her.
Stay strong but take care too. Prayers and positive thinking are always great. Gentle hugs, Reet
Vintage,
sounds like you are bit overwhelmed which is completely understandable! I think you personally of all people will be able to handle diagnosis of SLE just find. Just give it a good year to really understand how it is effecting your body..in's and outs just like you have done, most likely, for your RA.
You are care taker clearly....you are going to start having to put your health first. I know this is going to feel like you are letting down those you love in the very worst way...but to help yourself i would say this is very important. Not that you cannot help just you maybe can share the duties with others so not all on you. Maybe you will be able to take care of those you love as well as yourself...just be aware of how you feel and do not ignore it. You do not want to end in the hospital as you will not be able to help but need help.
If you are getting outside..you might not need Vit D...simple blood test...ask your doc to do it. My younger sister got all kinds of allergies and turned out to be only severe stress...not kidding. She just needed to learn to put herself and her health first instead of loved ones. You sound a lot like her and if it is same well i like you to find this out sooner and not be put through tests that are not necessary.
I am not surprised you have brain fog ...look at what you been though!! you need to grieve...you might look into finding a grief counselor to help you get started.
As to tomatoes being trigger and other veggies..i kept food diary for over a year..night shades never bothered me at all so if you love them...eat them! If you are worried keep a food journal like i did but do not just assume they make you sick especially if you have home grown ones!! nothing is better!
Give yourself time...slow down and remind yourself to breath. I just can hear you racing and not breathing..nice slow deep breaths. Please try and be kind to yourself, do things that you enjoy and make you happy! Keep a journal so you feel more in control and to see if there are any patterns.
But with RA all your life sure you are more experienced than most....you know what to do...go slow and learn about your body...yourself and most of all have fun!!
Brittany,
Thank you for sharing you trigger foods, and its always good to have more spiritual encouragement! I will definately keep all of you that I've met so far in my thoughts and prayers in dealing with this complex disease. I'm praying for more good days than bad for all of us! :)
Ali
Brittany said:
Well I'm still pretty new to the diagnosis as well. Some foods that I've had issues with are alfalfa sprouts, camomile tea, and foods with a lot of garlic. I'm glad that you too find strength in the bible. It's very important to focus on the positives. Often times we get so focused on the negatives that we forget about all the great things going for us. I've found a lot of support from a lot of great people on this site. Brain fog haha I've had such a huge struggle with this but I do know there are better days.
Brittany
Cindy,
Thank you for saying that actually, I feel like that sometimes and then think that I'm being selfish...it's nice to have alot of you saying this. It makes me feel a little less selfish lol. I am keeping a medical journal, keeping good records of past emergency room visits, everything each specialist has said and I need to update my medication list. My aunt actually told me I should do this medical journal and I'm glad she mentioned it! Especially with the brain fog, sometimes its hard to remember everything the doctor said. And as for taking over the counter meds, I do make sure to let my PCP know everything I'm taking. Thank you for the support and kind words! :) I will keep you in my thoughts and prayers for strength and good health! :)
Ali
freightliner said:
Hi
pardon me for this, but when is someone going to take care of you. You need to take care of yourself first even before you can help someone else. Keep good records for yourself. all of your medical professionals need to know your full illnesses and meds. I wouldn't take any over the counter meds without drs knowledge.
We're all here for you.
stay positive.
Cindy
Lori,
Thank you for your kind words also, and thank you so much for keeping me in your prayers to find the strength to let everyone know that I can't do everything. I think they only understand part of what I'm going through and know that I have the JRA, I've always been so strong even with it so I guess they think that I'm still as strong, but I dont have enough energy for it all anymore. My mom is great at helping me most of the time but she has alot going on and some very emotional struggles right now and leans on me as her rock so I try to be there for her as much as I can and my Uncle the one who was sick he's doing a lot better now and he tries to help out as much as possible but its tough for him,he has a busy life, Everyone else has just always relied on me and I've always felt like because of that I had to just put what I was going through aside to help them. I see that I cant put it aside anymore, I wont stop helping but I will try to find a middle ground and only do what I can do. :) and I love hugs! :)
Hugs back!
Ali
loriken214 said:
Bless your heart.....you need to take care of YOU!!! I pray that you have the strength to say NO and focus on your health right now. Continue your walk with the Lord and He will guide you. Stress is the last thing that you need and it affects your illnesses. Do what you are able to do each day and nothing more.
HUGS!!!
Lori
Ali, I keep an excel spreadsheet with my medications and the dose, number of pills and who prescribed. I also of surgeries and procedures and the dates too. Drug allergies are on there. One thing I didn't do was put down the reason I had to stop taking certain prescriptions and I am asked that a lot. Put down any supplements too. I update this and always have a copy tucked in my wallet. I also print out that sheet for the doctor I will be seeing as a new patient.
There is also a journal that comes from Glaxo Smith Klein that is free you can request. Someone here put that on this site and I got nine recently and it is quite nice, Hopefully someone here will have more info on that for you.
Good morning vintagealicat
Good advice from reet. You do need to take care of yourself first. You were not to busy to help others now they now to help you. I keep records etc but i need to do better. Reet, do you think I can get that journal from staples or an "office supply store"? I am not to sick(yet) and it's a good thing because on wed we found out my husbands cancer is back.It's going to be 5 long days til he gets his CT scan and bone scan.
We are going to have a good day with friends tomorrw so that's what I concentrate on, that will get me thru today and tomorow.
Have a good day and take care.
Cindy
I tried to find where the free journal was posted but didn't find it. Jason posted last year about a phone app called Health Trace Lite and it was for an I phone but others said it was also on the Android. The post was back in August I remember because we were at our sons in CO and I sent for it right away and got it about 3 weeks ago. It is about 4 x 6 and is basically ruled pages and calendar pages each day of the week. In the back are little red and green dots for you to apply to each date to indicate how the lupus is affecting you. There are also some other stickers for you to mark doctor appointments. So yes, basically you could get a notebook where ever and do the same thing buying dots, etc. Hope this helps.
Hi reet
I don't have any of those fancy phones, I wouldn't know how to use it if I did. Thank you anyway. I do bridal alterations so I have one appointment book for bridal fittings and r appointments. Needless to say there are more dr appointments than bridal appointments.
I probably can make my own book for a diary. I really should because I can't rely on my memory.
Have a nice weekend.
I would use my own diary type thing too. Trying to use my phone for all that stuff is not me. I do have an I phone as I was able to upgrade for free and my son helped me to get it otherwise I wouldn't have it. I need to see things on paper mostly though. You have a nice week-end too, Cindy.
Siskiyousis,
You are right I am definately overwhelemed! Lol. Thank you for saying that you think I'll be able to handle the diagnosis. That gives me a little more confidance. :)
I am a caretaker and it wont be easy to say no to anyone in my family or my friends but I do know that I need to find a middle ground, help when I can and let them know that I just can't when its too much. I will defiantely work on that :)
It would be awesome if the allergies are just from stress and will go away when I learn to manage that better! I'm glad that I remind you a little of your sister, she sounds as awesome as you are! I will definately work on keeping a food diary and I already do keep a medical journal and thank you for all of the advice and support! I will be keeping you in my thoughts and prayers and for more good days than bad! :)
Ali
siskiyousis said:
Vintage,
sounds like you are bit overwhelmed which is completely understandable! I think you personally of all people will be able to handle diagnosis of SLE just find. Just give it a good year to really understand how it is effecting your body..in's and outs just like you have done, most likely, for your RA.
You are care taker clearly....you are going to start having to put your health first. I know this is going to feel like you are letting down those you love in the very worst way...but to help yourself i would say this is very important. Not that you cannot help just you maybe can share the duties with others so not all on you. Maybe you will be able to take care of those you love as well as yourself...just be aware of how you feel and do not ignore it. You do not want to end in the hospital as you will not be able to help but need help.
If you are getting outside..you might not need Vit D...simple blood test...ask your doc to do it. My younger sister got all kinds of allergies and turned out to be only severe stress...not kidding. She just needed to learn to put herself and her health first instead of loved ones. You sound a lot like her and if it is same well i like you to find this out sooner and not be put through tests that are not necessary.
I am not surprised you have brain fog ...look at what you been though!! you need to grieve...you might look into finding a grief counselor to help you get started.
As to tomatoes being trigger and other veggies..i kept food diary for over a year..night shades never bothered me at all so if you love them...eat them! If you are worried keep a food journal like i did but do not just assume they make you sick especially if you have home grown ones!! nothing is better!
Give yourself time...slow down and remind yourself to breath. I just can hear you racing and not breathing..nice slow deep breaths. Please try and be kind to yourself, do things that you enjoy and make you happy! Keep a journal so you feel more in control and to see if there are any patterns.
But with RA all your life sure you are more experienced than most....you know what to do...go slow and learn about your body...yourself and most of all have fun!!
Reet,
That journal sounds really helpful and awesome! I think I'll definately do that, I like the sticker idea, that would be really helpful in keeping my days and my thoughts organized! Thank yo for the information!
Have a great weekend!
Ali
reet said:
I tried to find where the free journal was posted but didn't find it. Jason posted last year about a phone app called Health Trace Lite and it was for an I phone but others said it was also on the Android. The post was back in August I remember because we were at our sons in CO and I sent for it right away and got it about 3 weeks ago. It is about 4 x 6 and is basically ruled pages and calendar pages each day of the week. In the back are little red and green dots for you to apply to each date to indicate how the lupus is affecting you. There are also some other stickers for you to mark doctor appointments. So yes, basically you could get a notebook where ever and do the same thing buying dots, etc. Hope this helps.
Cindy,
I will keep you and your husband in my prayers! I have alot of loved ones dealing with cancer right now so I do understand, but its not the same I know. However my aunt had inoperable cancer and was actually given about a month to live in July and near the end of July they did another scan and another and more tests, they couldnt believe it, the cancer was gone!!!! :) I will pray for strength for you and your husband and your family as well and for the best outcome in all of this! Just know there is always hope!
I hope you have a great time with your friends and when you can, keep us updated on you and your husband so we can pray more specifically for you both.
Hugs and Prayers,
Ali
freightliner said:
Good morning vintagealicat
Good advice from reet. You do need to take care of yourself first. You were not to busy to help others now they now to help you. I keep records etc but i need to do better. Reet, do you think I can get that journal from staples or an "office supply store"? I am not to sick(yet) and it's a good thing because on wed we found out my husbands cancer is back.It's going to be 5 long days til he gets his CT scan and bone scan.
We are going to have a good day with friends tomorrw so that's what I concentrate on, that will get me thru today and tomorow.
Have a good day and take care.
Cindy