New to this site. Never "chatted" before.
My name is Maggie and I live in Alberta, Canada. I am 38 years old and a wife and mother of a 19 month old baby girl. I was diagnosed 8 years ago, but have had SLE since my teens. I'm not sure what I hope to get out of this; new information about treatments for sure, recognition that it's not "all in my head" maybe... I have severe light sensitivity. All forms of light, sun, florescent, halogen, etc. will burn my face fairly quickly. I wear long sleeve denim head to toe all year round, along with a hat, gloves and a veil. I also deal with neverending joint pain, muscle contractions, nausea, fatigue, heat and cold sensitivity, mouth sores, and various skin rashes and sores. I went from m.d. to m.d. for 10 years looking for answers without any luck. Finally saw a homeopath who actually took the time to talk to me and at the end of the 90 minutes said he'd stake his career that my diagnoses would be SLE. Thank God for him. Anyway, that's me. Anyone else have both skin and systemic difficulties?
Welcome to the club. Ugh, sorry that you have Lupus too, like all of us.
You will get a wealth of information from here. I have.
It an odd way it is nice to know, a homey feeling to know there are people just like us we can type to. To be able to have guilt free venting. Find ways to ease symptoms. Day to day living with Lupus. How each of us deal with doctors and just to talk about our lives, children.
I have SLE also and a few other diagnoses tossed into the mix. I have facial malar rash, nose ulcers when in a flare, muscle and joint pain and the neverending fatigue.
I currently take Plaquenil which has improved my health tremendously. Lessening or eliminating many symptoms. My facial rash is down to being basically bump free and now is just a pink tone. Muscle and joint pain, very, very mild. Still dealing with the fatigue.
My rheumatologist suggested 200mg of CoQ10 for fatigue. I just started recently dosing with it so results thus far, unknown.
I also have Sjogren's Syndrome. Combined with Lupus my eyes are extremely sensitive to light, to fluorscent too.
Must be hard covering completely from head to toe when out and about. I am fortunate, sunscreen works for me. My malar rash my radiate red, get a bit of nausea, increased fatigue and headache but no other rashes or sores from the sun.
Have you heard of RIT, makers of clothing dye...they have a product that you wash your clothes with to create a sunscreen fabric. Maybe this will help so you don't have to wear such a heavy fabric as demin in the summer months too. Somewhere on this board I posted a message regarding it. Have you seen it?
Saysusie is a walking resource book on Lupus...her posts are very informative and very useful, in regards to your thirst for knowledge, approaching doctors, disability and etc...look for her posts...
Be well, Maggie and again welcome.
I have a couple of questions, although homeopathic treatment has its usefulness what did your homeo say about treatment??? I am glad he said what he did, did he refer you to medical treatment???
there are natural treatments that homeos use on a regular basis that will complicate sle lupus such as st johns wort and so on, be carefull about what you take
Fair Oaks California
Welcome to our family :lol: You've already gotten a taste of how supportive, welcoming, informative and caring our members are. As Teriod mentioned, do be careful of some of the natural products as they can, indeed, complicate some of our symptoms.
Many of us suffer with both the skin and internal symptoms of Lupus. It is not uncommon, so you are not alone. Also, as Oluwa pointed out, many of us also suffer with Lupus and a host of other disorders. So, we are all understanding people here :lol:
We want you to know that you are not alone, that we are here to help you in any way that you can and that you may ask any question and we will do our best to answer it! Also, we are here to just listen to you if you need that also!
I am happy that you found us and that you've decided to join our family! I wish you the very best
Peace and Blessings
It is so nice to read everyone's stories. I was feeling pretty down last night when I logged on. I have a bunch of new symptoms that I was unaware were Lupus related and already have found others with the same difficulties. To answer your question, my homeo is also an m.d. but he referred me back to my regular dr. armed with the right questions to ask and tests to demand. He also discovered through his own testing that I was severely anemic and vitamin D deficient. He put me on some supplements which when I take them, seem to make a credible difference. Unfortunately, he and I had a parting of ways a few years ago because he wanted me to try chelation therapy and after researching the risk (can be really hard on the kidneys) I said no. He sort of lost interest after that. I have the name of a new homeopathic m.d. (I feel it's important to have a homeo who is also an m.d. because of all the meds I take) but I haven't as yet made an appointment. I've been in a bit of a rut as late. It's been a long time since my last remission and I'm sick and tired of being sick and tired ya know what I mean??? When I look at my dish of pills each night, I get a bit resentful and well sorry for myself. Then I feel guilty because there are others who have it a lot worse than me. My husband is a dream. He is supportive to a fault and never judges or complains about stuff that doesn't get done. He travels for work, so he's gone 7 days and home 4 days and on his days off, he takes over the care of our daughter and the cooking, maintenance, shopping, etc. He knew about my disease shortly after we met, but I was still working then and really expected to keep doing so for at least another 5 years or so. It turned out to be only 2 and I feel bad about that too. I miss my job, the sense of making a difference, the recognition, interaction with coworkers, etc. I miss the challenge of a crushing work load, managing subordinates, budget cuts, travel, etc. I would like some suggestions from anyone out there on how to deal with extended family and their unwillingness to acknowledge or accomodate my special needs (i.e. don't plan a backyard/beach birthday party in July and expect me to attend). All of my friends and my husband's family immediately draw the drapes and turn off overhead lights when I visit. They don't make a big production about it, they just do it. My family never does this and when I ask them to there is a huge production about how inconvenient it is (and unnecessary). Anyway, I've whinged plenty enough in this never ending post. Thanks for the welcome and I look forward to talking with you again.
What type of rut are you in? Mental, physical or both? Depression?
Sometimes to get us out of a rut, we have to make it happen because I have found more often than not if I wait it never happens . And the trench gets only deeper.
How are you physically? Are you able to walk about, at night in the cool air? Stretch? Go to the theatre for a late night showing? Have a picnic or walk a lake's shore at sun's set? A concert? A deep body massage to bring your body to life again..it is quiet and dark...
I wish your family was more understanding, perhaps the saying for them is like we all hear.."but you don't look sick". There is book out there...gee goodness what is the title. Saysusie? Help...what is it? Surely, she will know. My mind went blank.
When I try to concentrate it feels like I am looking at blank chalkboards and slam up against a wall....you ever get like that? I can type this, chat but times it is like the file in my mind for recall had been wiped out. Strange.
My husband travels..usually 4 days a week. He tries to be a dream...smile.
But I don't think he really gets it..Lupus and me that is. Perhaps, he feels helpless. Probably more so than I, that he just doesn't know where to begin. He doesn't judge me, he just looks frustrated when I have a bout of what nots.
Does your dish of pills look more like a meal because there are so many?
It is okay to feel resentful and natural to feel guilty...but those negative thoughts can leave us in the rut longer. I try to think of those who have it worse than me, well, if they can keep going, finding their way...well, so can I. I pick myself up and have at life again.
I hope you find yourself up and out of the rut soon. Maybe it might help you to end your flare sooner...
Being well I want for you. Hope it happens today!
My rut is mostly mental I think. My physical symptoms just now, while tiresome, are certainly not extreme. It's just my normal its summertime and I wish I could have a normal life especially now that I have my daughter blues!! :roll:
Yes I get the "file deleted" message in my brain on a regular basis. This is a new problem for me and it worries me probably more than any other. In my former life I did a lot of public speaking, lecturing, writing, etc. I loved my work and would someday like to go back to it on a more part-time basis. It's going to be difficult to acheive if words, concepts and ideas are regularly and randomly deleted from my memory!
Yes my pill dish does look like a meal :evil: What a way to ruin a nice meal.
I go for massage nearly every week. It's the only way my body will keep mobile. I do go out in the evening to walk around our property (we live on an acreage), but as my daughter is sleeping and my husband is away most of the time, I don't get out much otherwise.
My moods are fairly mercurial with really good days and not so good. My daughter is a constant reminder of the wonderful blessings in my life. We waited a long time for her and had many disappointments. She is our ray of sunshine and everyother good thing in the world. She makes getting out of bed on those not so good mornings possible.
I was reading somewhere in this forum about a drug called Lyrica. The person speaking said it was for FM and it boosted their energy, reduced pain AND helped them sleep at night! This sounds a bit too good to be true. Does anyone have any info on this drug i.e. dosages and side effects? I don't have a rheumy just now but my regular doc is quite amenable to things I'd like to try etc. I just like to do the research myself prior to asking.
Anyway it was great to hear from you - thanks
No I never heard of Lyrcia. Plaquenil for me has relieved many of my symptoms or to a level of being mild. Every once in while something new will occur. Times I daydream about not noticing the feel my body, my arm, my hand, my face. Like other people, I want it to be just there. You know what I mean. Our bodies make us constantly aware that is there, aching..I just don't want to feel my hand resting on my leg. Or knowing my neck is holding up my head
Is Plaquenil in your dish?
I was thinking when you visit your family and they don't accomodate you maybe you could just have them over to your house, have it set up for your needs or visit them in the evenings. Maybe they don't grasp what Lupus is. Leave a book in their bathroom...a brochure on the coffee table...
Or when you visit, say do mind if I close the drapes. And for sitting outside keep an umbrella in the car for those backyard parties.
The gnawing, aching, chronic pain, symptoms is mentally wearing...are you focusng on other things besides your illness.
Summertime for most means being free, running, sun, splashing...skimpy clothes but you can find things to enjoy on these long summer nights with your daughter. UVA rays are low after 4PM in most areas. Make a sand box, rubber inflated pool, wet slide, a swing in a tree..Barbie Doll's on the porch...sleep in a tent under the stars...make hand shadows on the wall with a flashlight.
With Lupus, we have to reinvent our lives. Tiresome, don't we know it eh. Even if we weren't sick, we would always be looking for something new, a change...most changes go unnoticed, being so gradual. With Lupus or any illness we have to make a new happy. We get so use to saying "I used to"...we need to replace it with... "I would like to try this..." Easier said than done, eh? I am still a work in progress too...
I am not who I was, nor will I ever be.. I know I will never be like I was when I was 16, 20, or 30 sick or not....we grow, we adapt, we change. Being ill just creates a forced change. Mourn who you were, welcome the new you. Explore the other dimensions of yourself.
So, pick yourself up, do something new today..climb out of that rut. You and your daughter have a whole lot of living to do together...
Take on the day..enjoy,
Plaquenil is in my dish - or it's supposed to be! I am taking a trial run being off of it. I don't really think it makes that big a difference in my symptoms. It's been about a month and no change so far - so we'll see...
My family - well you can't choose your family so the saying goes. :roll: I live in about 2.5 hours away from everyone else so the onus is usually on me to visit. I decided this year though to be a bit more proactive and not travel at all in the summer months. They are angry but what do you do? I've explained till I'm blue in the face, provided info off the web, etc. I really can't blame them entirely. It took me almost 15 years to convince a medical doctor that something was amiss. Even when referred to a derm, she merely suggested that I start wearing sunscreen when outdoors :x
Alexandra (my daughter) and I had a lovely day today. It was cool and rainy off and on and we walked the fields with the dogs and had a picnic on the swing. The good thing about her is that she doesn't care if its raining or sunny, she just likes to be outside.
Yes, I think everyone with chronic pain is hyper aware of their bodies. Do you ever make those deals in your head, "If I could just have one day, one day to feel normal, to not take meds, to not worry about sun exposure, to not take inventory of what hurts as soon as you wake up, to be energetic, etc. etc. Then it would be ok to go back to SLE. Like being able to catch your breath.
When you say no change regarding the Plaquenil, does that mean no change being off of it..or no change while on it. Are you waiting for a possible flare?
Oh yes, indeed..I make those deals..just one day..all I ask is just one. It gets answered and things just seem to be a bit easier, a bit more calm. I think I forgot what it is like to feel "normal."
I can visualize what I would like to be doing..but I really don't remember what normal is anymore. I've been so protective of my spine and joints for so many years..it seems the pain, the awareness is like a old ornery friend, yet a friend. You know what I mean. Maybe that is called acceptance and I am able to move forward with a new self...you think..humm..
You and Alexander... sounds like you two had a fabulous day. She and your husband are all the family you need.
I know in families, the relationship can be one way. Sometimes my Dad says that about one of my siblings, gee they never call and then I ask my Dad, have you called them? No. Now he tries. I don't live near my Dad, but I call him every Sunday at least..sometimes two to three times a week. Especially if he has a doctors appointment. He has diabetes. Loosing his eye sight and severe kidney problems.
That should be reason enough for all my siblings to call him, but they don't. Times I think my family believes we are all invincible, infinite and don't realize the gravely of the medical situation. Or in denial that my Dad might pass on. My Mom passed from cancer and I think a good percentage of us eight children were in denial. Afraid to reach out, afraid to say goodbye while she was alive...
Hope you and Alexandra had another great day...only 19 months...so many more great times ahead for you two.
Stay covered, be well Maggie,