new to Lupus - SO overwhelmed
pinkgrandmaof8
Posts: 70 Member
Have had symptoms for at least 10 yrs, but started breaking out in horrible burning, itching, rashes all over about 5 wks ago. All limbs and the classic butterfly rash. It has not really calmed down since then. Been to the ER, and seen two doctors, had a positive ANA, and am being sent to a rheumatologist. Arrangements are being made through my PCP. Am currently taking prednisone, naproxen, and plaquenil, trying to control maddening itch with benadryl. Having headaches, body aches and weakness, exhaustion, and bad cramping of feet and legs. Also trouble thinking, making decisions and my fingernails are getting all funky. Go from being really emotional to just feeling numb. I am a 13 yr stage three breast cancer survivor, so I am acquainted with fighting hard, but the idea that this will not ever go away, but be progressive and can't be predicted or killed off...that's daunting to me.
I also have a younger sister who was recently diagnosed. She seems to have many more severe problems like heart and kidney disease and has had 3 stents put in. I recently had a heart scan that says I have a 70% blockage in the front side of my heart.
And the kicker is I don't have health insurance.
Is what I am experiencing called a flare? Does any of this sound familiar? I have lost 33lbs over the last 4 or 5 months, but I am recently struggling to keep losing. I'm researching anti-inflammatory foods to try to help. What do you do or eat that has helped?
Thanks,
Tess
Tess
I also have a younger sister who was recently diagnosed. She seems to have many more severe problems like heart and kidney disease and has had 3 stents put in. I recently had a heart scan that says I have a 70% blockage in the front side of my heart.
And the kicker is I don't have health insurance.
Is what I am experiencing called a flare? Does any of this sound familiar? I have lost 33lbs over the last 4 or 5 months, but I am recently struggling to keep losing. I'm researching anti-inflammatory foods to try to help. What do you do or eat that has helped?
Thanks,
Tess
Tess
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Replies
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Hello! Is this group defunct? I'm hoping not:(0
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Hello there... It does sound like your are experiencing a flare. When you flare, just try your best to take care of yourself and be gentle with your body. It's difficult to be dependent on help from others, but if the help is there, take it. Also, make sure you are staying WELL hydrated and getting plenty of sleep. As for the fatigue, ask your doctor about taking high dose vitamin D and DHEA. Both will help. I find that the headaches are worse when I don't get enough sleep (I have a 6 year old old and 4 year old) and when I am dehydrated.
I have found that ultimately once the flare begins, you have to let it run it's course. Once again, it's tough to just kind of bow out of some things in life, but you have to let people know that you need your rest.
The thought of the lupus worsening over the years can be daunting, but try not to think about it. You will cross that bridge when you come to it. Just worry about the here and now. Have you tried meditation or yoga? Both have helped me immensely. Another thing, do your research. A lot of people will tell you a lot of things about lupus, but everybody has different symptoms and you have to get to know your body.
I hope I answered all of your questions. If not, message me. I hope you feel better soon. I'll be thinking about you.
~Eileah0 -
Thank you so much for your help. My emotions seem to be all over the place and I am trying to research so I can try to understand it better. Also, studying concentration of anti-inflammatory foods. I have worked hard to lose weight and I have 27lbs. to go. I do not want to lose ground in that battle either, but for the 5 wks since dealing with this, I have lost only a couple of pounds and I was losing regularly.
I don't know yoga, but would like to learn. Prayer helps me and being surrounded by the Word.
I will check out vitamin D as well as DHEA.
Thanks again and stay well!
Blessings to you and yours,
Tess0 -
Hi Tess
I was recently diagnosed with Lupus as well... just in March... and it is very overwhelming. They also put me on a pretty rigorous plan for medications -- predisone, cellcept, plaquenil, atovaquone, and then all the supplements like Vitamin D, fish oil, calcium, etc. All told, I'm taking 23 pills a day, and at age 31, that just feels like a lot. To add to that, I'm about 60 lbs overweight, which I know isn't helping my health any. At the same time, losing weight under stressful conditions -- as well as when you're on certain drugs (prednisone especially is famous for inhibiting weight loss) -- it can feel hopeless. My plan of attack though has been to be gentle with myself -- not to beat myself up for losing slowly -- and to adjust my expectations while still trying to challenge myself. I can't pretend like I don't have lupus (although I often want to). But I can't let lupus become the focal point of my life either. All that is to say, I think it's about finding balance. A balance between rest and activity, a balance between challenging yourself and being patient with yourself, a balance between embracing new realities and doing what you can to fight back.
On a side note, I read your note about your nails getting kind of funky -- that happened with me on prednisone within the first couple weeks. I was on a high dose -- 60mg/day -- and I pretty much had every side effect at one point or another. Thin, weak nails; skin pruning, night sweats, insomnia, a mild form of mania, brain fog, stretch marks, moon face, weight gain, and now that I'm tapering off the prednisone, depression. Fun! I guess it's just about taking it one day at a time, and learning how to ... what's that prayer? ... have the grace to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference.0 -
I am working with a woman who is a holistic health practioner who also happens to have lupus. She is an amazing woman, and helps guide me in certain things. As for the anti-inflammatory foods.. the BEST one out there is plain old raw cucumber! The WORST food is any animal protein. I can post the link to her website that she provides services online that are customized to the individual. She is a close friend of mine, so I just work with her on FB. She also makes many teas, healing salves, and pain oils. All of her products are all natural and good for you. I used her healing salve on my leg after a skin biopsy and it healed it up pronto, even after it was infected! It got infected because of my diabetes before the healing salve came in the mail.
This is her website:
http://farmerchick.com/
We also have a private group on FB that is very very supportive, we call it our second family, called LupieVille. If you look it up it will say that it's a "closed" group, but this just means that anything you post there can't be seen by people who aren't a part of the group. I have had lupus for about 5 years, and it is overwhelming, even five years out when new symptoms come up. I had to have knee surgery in 2011 because of a birth defect, and that through me into a state of "active" lupus which has been active ever since. My lupus affects my central nervous system, heart, lungs, skin, gastrointestinal system, and joints/muslcoskeletal system. I also have RA, fibro, diabetes, hypothyroidism, tachycardia and arrythmias, bipolar and PTSD, GERD and a multitude of other co-conditions. I take about 20 different medications a day, plus there are few that I only take once a week. I am on methotrexate, which is a chemo drug to help control my lupus, along with Enbrel for arthritis, high dose vitamin D. I have some websites that can help with covering costs since you don't have insurance, and there are also others that can help even if you have insurance.
http://www.myrxadvocate.com/
http://www.pparx.org/
http://www.rxassist.org/
http://www.needymeds.org/
http://www.nafcclinics.org/clinics/search (national database of all free clinics)
https://secure.mollysfund.org/ (an online support group off of facebook)
http://www.lupusskin.com/resources.html
http://clinicaltrials.gov/ (clinical trial database for the US)
http://www.prescriptionassistance.us/st/florida
http://www.celgenepatientsupport.com/co-pay_assistance.aspx
http://www.copays.org/how-we-help
http://www.xubex.com/CoPayAssistance.aspxDental
Healthwell Foundation offers grants to Lupus patients who have ins. But need help with medication cost. health wellfoundation.com or 1-800-675-8416. They pay for different illness. http://www.healthwellfoundation.org/
I also encourage you to visit www.lupus.org which is the Lupus Foundation of America's website. They have tons of information on most topics asscioated with lupus.0 -
Thank you ladies for your responses! I know you are dealing with this daily as well and that helps to know you understand. However, I wouldn't wish any of this on anybody!!! I'm still researching and trying to learn all I can. I think you are amazing to be able to deal with all of this! I will put you all in my prayers.
Thanks so much for the websites as well! I will definitely check them out. Hearing all that you are suffering, makes me realize that at this point, I'm actually not doing THAT badly and I need to work at my attitude about it.
I'm praying this is a good health day for you all.
Tess0
