If I Knew Then ~ Powerful

Google Image
Google Image

Powerful Suggestion
What’s the one piece of advice you wish someone had given you a year (or five, or ten…) ago?

Funny that this is today’s prompt. I had a dream this morning. I was in the mall with one of my daughter’s friend’s son. The kid had on this baseball cap that was too small and had rhinestones on it. So I was walking through the mall to help him find a new hat. He picked out one with more rhinestones the kid was about four or five years old. After he got his hat, we went shopping for some shorts and tees for him and my grandchildren. I became tired so we went to wait for the bus. In my dreams I could usually do anything however in this dream I was lupus exhausted.

Almost eight years ago I was diagnosed with Lupus as most of you already know. For years before my diagnoses I used sunscreen because I always suspected I had lupus based on my mother and her symptoms of lupus. I had the joint pain and swelling since I was fourteen. I would get these rashes every spring as soon as the sun got stronger. Over the years I had different signs of lupus but I didn’t know they were related.

I started having children at seventeen and basically live for them. I worked, paid bills and took care of the house and kids. Eight years ago I finally started enjoying life. My children were living their life and I eliminated the man whom I allowed to steal the best years of mine. I was making a decent salary with no responsibility but myself. I was hanging out at a local bar. It was like “Cheers” where everyone knows your name. Life was a party.

The year before I was diagnoses with lupus I had a full hysterectomy. After I started losing weight, I thought it was associated. Because I wasn’t doing anything to help me lose the weight but that was beside the point. I was looking good and wanted to look better. I was still smoking back then and I use to take breaks outside to smoke. The sun use to shine bright and strong outside where I smoked. I stopped wearing sunscreen so I could get a nice deep tan. I believed that since I didn’t have lupus by then which then I was forty-eight I wasn’t getting lupus.

I started getting rashes, I was exhausted and having difficulty breathing. Lupus was attacking me with a vengeance. If I could go back to those nine years I would have considered other options instead of having a hysterectomy. You see I knew I wasn’t going to have any more children so I said what the hell take the plumbing out. It’s not known how people develop lupus but it is suspect to be hormonal since lupus affects more women than men and they know lupus runs in families. I was in two risk groups.

I wish someone had told me that lupus could develop at any age and that it may be hormonal. Like I said I had symptoms of lupus but was never diagnosed. There isn’t a test to diagnose lupus. One must exhibit markers to determine if what you have is lupus. So one can have lupus but if the doctors don’t know all the symptoms you’re having it may be years before you could be treated. This was my case. I had symptoms that I didn’t know were related and some of them happened years apart. Many doctors don’t know the symptoms of lupus. This is the reason I share my story and information about lupus because awareness is the best way combat it. I wish I knew way back when I suspected I had lupus that a rheumatologist treated people with lupus. Maybe then I wouldn’t be disabled today.

For more information on Lupus please go to any of the following links.
Lupus Foundation of America
S.L.E. Lupus Foundation
Mayo Clinic Test and Diagnosis

 

What is lupus? What are the symptoms? How is one diagnosed? How is it treated?  Read here.

 

lupus1

57 thoughts on “If I Knew Then ~ Powerful

  1. Thank you for the blog. Ive had issues for years now. 2 tests have come back high positive but nothing definitive for lupus in them so far. My pcp was concerned it seemed like lupus. I’ve seen a rheumatologist who was very quick to diagnose me with fibro, dismissed the inconclusive tests and my symptoms as nothing. I just found out this past weekend that lupus runs a little thick in my family, some have died from it. And multiple other autoimmune diseases. That is info I did NOT have before. I’m very eager to hear another opinion from a more experienced rheumotologist, one that doesnt strictly rely on blood tests. Lupus might not be the right answer at this point and fibro might be right. I just need a good thorough dr I can trust and I think too many rheumatologists are book smart and not confident enough to step outside the box, too many need textbook definitions. Maybe they don’t care enough about their patients to stop worrying and just treat us like human beings with thoughts, feelings, and intelligence of our own.

    1. I am sorry you have to go through this. If you contact your nearest Lupus foundation of America or SLE foundations. The links are at the bottom of this post they will help you find a Rhuemotologist in your area. I know how frustrating it is. I use tell the doctors I had lupus but they dismissed me for years. I’m starting a new blog http://UsVerseslupus.wordpress.com I plan on interviewing people with lupus and sharing stories. Have you joined any of the lupus sites on FB Lupus Warriors, Lupus Matters, you know you have lupus when. Those are a few you can always ask people questions and they will let you know how they dealt with many situations of lupus. I wish you the best of luck and if you just want to talk contact me at the email on the new site. meverselupustoo@gmail.com HUGS

  2. Thanks for sharing your story, Kim…years ago when I tried “the pill” I tested positive for Lupus, so I went off of it and had to use other means of birth control…I’ve had no other symptoms, but your post stirs up other thoughts. Almost two years ago, our daughter, 20 yrs old, was diagnosed with a rare liver disease (she doesn’t drink) and there is no known cause and no cure, except a liver transplant when she’s near death (in the next 10 years). We get to wait and watch this disease progress and watch her get worse.
    This has been the daunting part of our life ever since and where many of my darker poems have come from…she is so healthy, otherwise, and we’ve screamed “why” so many times. Anyway, I wonder if doing a post on my blog would be beneficial for anyone who has the same disease or knows of it. I just wonder if we could learn something new…I’d have to ask her, though, which is why I haven’t publicly written anything about it before…what do you think? I would trust your opinion…anyway, take care and I’m sorry you have to go through this; there are no words to erase the pain and even though we don’t know each other, just know you’re in my prayers and positive thoughts…hugs, Lauren
    p.s. she has a great team of doctors, which we’re grateful for..

    1. I’m sorry that your daughter is sick. That hurts more than our own suffering. I could imagine the pain watching your child in pain and us being helpless to help them. With your daughter’s blessing I think you should blogg about it. I learn so much about lupus and all the different ailments that could develop. Through my blogs and through the FB groups. Sharing about your daughter’s illness could bring greater understanding and possibly other treatments her team of doctors may not be aware of. My prayers and thoughts are with you and your family.

      1. Thanks for your reply, Kim, and you’re so right about the feeling of helplessness, so much that it almost physically hurts my husband and I. When the time is right, I’ll ask her and see how she feels about me going public with it…thanks for your prayers; we’ll swap them back and forth. xx

  3. I also was diagnosed with Lupus, my diagnosis is new to me (April 1st was the first time I saw it in print). My doctors and I had been discussing the probability for months though as I had been diagnosed with one of it’s buddy conditions, Antiphospholipid Syndrome in November.My Rheumatologist ran a bunch of tests and ultimately they tested negative for the traditional lupus antibodies. He based my diagnosis on my symptoms, my family history, and the fact that I have APS. There are good doctors out there that actually listen to their patients, and realize Lupus isn’t a textbook condition. Easter Ellen suggested your blog to me and I am really glad she did! I look forward to reading more and getting to know you. Gentle hugs and well wishes from one lupie to another!
    Nicole

    1. Easter told me, she told you about me.That was a tongue twister. 🙂 Happy to meet you too. I also have aps. I’m glad you found a doctor that listened. The doctor who I was seeing when I still had health insurance before I was diagnosed with lupus suspected sarcadosis which is an autoimmune disease. He just suspected the wrong one. Which makes sense since I had lung issues going on as an ex-smoker. I failed to tell him the history of my mother because as I mentioned in this I thought I was past the age of being diagnosed with lupus. Like they say hindsight is 20/20. :-/ Thanks for stopping by and I too look forward to getting to know you.

      1. When I first started getting sick I knew it was Lupus, it’s on both sides of my family and I knew it had ‘caught’ me. I was with my old PCP at the time and he dismissed Lupus based on one negative test result. At the end of Jan I had to switch PCPs because my insurance made me. That honestly was a blessing in disguise. My new PCP has done more in the short time he has been my doctor to get me on the road to ‘better’ than one could imagine. I am in a much better place than I was that first day I sat in his office at the end of January. I’m still at his office once a week for my weekly INR check (that may eventually become an every other week thing, we will see). He works closely with my Rheumatologist, Hematologist, and Ophthalmologist and they all make a great team. I truly am blessed with an amazing team of doctors. I still have moments where I feel like I should have seen this coming, but truth is that’s not possible. Did your APS show up before or after Lupus?

        1. The aps came after lupus. It was discovered by my pulmonary doctor who suspected I had clots in my lungs making my breathing difficult. I knew I had lupus since I was a kid with arthritis. I had a bad swollen rash when I was about fourteen but I was on the beach and we all thought is was a sun burn. Never got checked. My mother has lupus and I knew the symptoms and like you the test I was taking weren’t show the lupus. I have the sulfa allergy, I had a false positive syphilis result and both were discovered by the same Pc who happened to be my mother’s PC. I had a discord rash on my leg that I was seeing a dermatologist for. After several different creams she finally gave me a cream with steroids and said if this doesn’t work I’ll do a biopsy. The cream worked of course and didn’t have the biopsy. If I did it would have shown lupus when I was in my early 30’s then. That’s why it’s so important for this information to be shared.

          1. I agree! ne of the reasons I started my blog was to get the information out there. I want to share my story and to get the point across that Lupus isn’t and shouldn’t be diagnosed by lab results alone. It is a trend in my family for us to start showing symptoms and then many years later we will start testing positive for the ‘traditional’ lupus antibodies. My Rheumy said it is just a matter of time before I start doing so, but he wanted to start treatment now and try to stay in front of it. I already have some mild kidney involvement and he wants to do his best to stop any more damage from happening.
            You had mention hindsight being 20/20, now that I have my diagnosis I catch myself looking back over my life and going ‘ahhhh it all makes sense now’ There were several illnesses or oddball things that happened to me throughout the years that just didn’t make sense, now that I’ve been diagnosed with Lupus…it all makes sense. Funny how things like that work out.

            1. Yes now that you know what the signs are. I meant to say I use to take a truck load of medication. I wanted to get off as much as I could and I would ask the doctors and they would say okay try. Now I only take prescription pills plus the two breathing medications. I take vitamins and pills for pain and to help me sleep when needed. Hopefully you’ll get off some of your meds in time. My first blog was titled Me verse lupus and I started writing it two years after I was diagnosed. I did a lot of boo hoo on that blog. It’s on blogspot. I told my whole life story on that blog. I stopped writing there and came to wordpress and said I wasn’t writing any more I have lupus cry, cry post. 🙂 So I kind of came to terms with lupus and it lives on my terms not I on lupus’s terms.

              1. I get that, I’m on a journey, Lupus and APS just happen to be along for the haul. I’m hopeful I can cut down at least 1-2 in the next two years but most of the ones I’m on are long term meds. That’s okay though as long as they are doing their job and keeping me from getting sicker or experiencing as much pain as I was experiencing I can live with it. When this first started it was overwhelming but it’s starting to seem routine and just another part of life. I’m still in the acceptance phase of all this. I’ve been talking to my therapist a lot about it the last couple of visits with her and she thinks I’m moving through the stages of all this pretty well. All I know is there are a lot of different emotions going on and they suck a lot at times. BUT I also know that is okay, and I want others to know that they are okay and it’s part of the process of being chronically ill. Seriously I do not know HOW to be sick. This has been an adjustment for me. I’ve told my PCP a few different times that I don’t know how to be this person I’m being told I am now. LOL Of course I also told him I was ready to give Lupus back any time he wanted to put it back in it’s box. 😛 I think I’ll tell my Rheumy Monday that my trial version of Lupus has expired and I’m ready to try something new. 😛 I figure if I can joke and laugh my

              2. Haha you’re funny. When I first got sick they kept telling me I was so sick that I started to believe it and got depressed. It was when I got diagnosed with PH Pulmonary Hypertension and started taking that and the wafrin that I started getting better. Yea the meds I’m on are basically what I’ll be taking until who knows when. If I lose weight I may be able to stop some of the BP meds. Joking is good I joke a lot too about being sick. 🙂

              3. Let’s see my small pharmacy includes my anxiety med that allows me to stay sane and sleep, topamax because my brain was freaking out because of APS and Lupus and migraines of a few different types were happening, Plaquenil and Imuran for Lupus, Warfarin i’m on for life or until they approve a better anticoagulant for APS, Fish Oil for my joints and because it’s a mild anticoagulant, Lisinopril because my BP went up due to my kidneys, and Omeprazole because all the meds piss my stomach off.

              4. Yep I only take plaquenil, warfin, 3 bp meds, revatio for PH, advair, and spiriva. pepsid for the stomach. I take toviaz for overactive bladder I take a daily antibiotic for chronic uti’s. I take cranberry pills, magnesium, B12 and calcium with vitamin D . Do you take calcium with vitamin D? You should the steroids and not getting enough d from the sun and green veggies will deteriorate your bone mass. 1200 mg is recommended dosage. I use to take cellcept for the lupus and immuno suppressant drug. I had the doctor wean me off. 🙂

              5. I have only taken one very quick round of steroids I have a slight sensitivity to them so we try not to put me on them unless they are absolutely needed. When I got the vaccines in preparation of starting Imuran….It caused a massive flare and my PCP decided to start a round of very low dose. I started at 20 and went down from there. It knocked out my symptoms quickly I felt the best I have felt since all this started. It sent my BP skyrocketing though so we know they can’t be a mainstay. I have a round on hand though and he told me if I need them to start them and then call him and let him know and then come see him. I will talk to my Rheumy and PCP about starting vitamin D and Calcium supplements. So far my calcium levels have been fine they test them ever so often. Cellcept is on the list of drugs that I may end up trying should Imuran (it’s also an immunosuppressant) not work out. So far though things are going great with it. I’ve been on it for about a month and my body seems to be tolerating it well.

              6. (Well then, WP decided I was ready to send that reply before I was done) I figure if I can joke and laugh my way through this then all will be fine in the end. Luckily my PCP has a good sense of humor, hopefully my Rheumy does too. 🙂

  4. I understand what stress can do to your body.. all those years in a bad marriage and raising your children probably were also triggers to your already predisposed Lupus. I have Lupus in remission, but active RA (very similar in symptoms and the way that it effects you). I’ve had it pretty bad for eight years now and at one time could hardly walk for two years. One drug after another… you know how it goes. I have gotten sun rashes all of my life, but thought it was an allergy. I had achy joints for years, but just thought that I was tired and stressed. I found out later that I have a cousin with Lupus, so it must be on my mothers’ side of the family.

    I hope that it is under control now to some degree.

    1. Yes it is. It affected my lungs and heart. I had rashes my whole life too. I had a stress flare before diagnosis. A rash that was all over including the palms of my hands and bottom of my feet. It was stress from my job. When i was a kid the doctor told my mom that I was allergic to chocolate and peanuts. When I got older I ate chocolate and never broke out. I associated my rash with the sun. I would ask doctors to check and the markers always came back in normal ranges. I think i had discord lupus. I had this bad rash on my shins. The dermatolist was going to do a biopsy if the last cream didn’t work. It was steroid base and of course it worked. It was another fifteen years for me to diagnoised with sle. Glad you’re in remission. I think it’s funny that we met. 🙂

      1. I am so sorry that it has affected your lungs and heart 😦 I have been lucky that way, although I am going for a test to see about my heart as I’ve had pain in the chest cavity that the specialist thinks could be either swelling around the heart or joint pain in the area.
        Being diagnosed earlier would have made life so much better as you would have avoided the triggers.
        It is wonderful how we’ve met 🙂

        1. I’m doing good I was on oxygen three years ago. Diagnosed with COPD but it was pulmonary Hypertension. The blood doesn’t flow from my lung to my heart. Also I have aps (lupus anticoagulation) so once I was put on the right meds I started getting better. The doc thinks i had blood clots in my lungs restricting my breathing. Now I just need to lose steroid weight.

          1. Oh my gosh! You’ve been through so much. Steroid weight sucks.. changes the shape of your face even. I never did lose all of it. I had been on a low-dose of steroids for more than two years. Can’t seem to get it off no matter what I have done.. joints are really bad though, so exercising other than short walks is impossible.

            1. I insisted to come off the steroids. I was on 60 for several months then on 30 for amost 6 months and I had stopped smoking at the same time. I hope you get to get off them. Do you take plaqueline?

              1. No, I have been off of the steroids for a few years now other than small doses here and there for rashes and flares of serious swelling.
                I no longer take the Plaquinil but instead take Methotrexate and Rotusin, both are chemo drugs given in small doses. the Methotrexate makes me nauseous week after week. So tired of it. my rheumatologist is adamant about taking it though for the RA.

              2. I take the plaqueline and was taking cellcept. I don’t have RA, just osteoarthritis and inflammation. I hope I never need steroids again. When I first got sick I took cycotin that’s hotre chemo drug too. Did nothing. If cellcept didn’t work they were going to try methotrexate. But cellcept worked. I know that must be hard going every week. I had going once a month to check my blood levels from the cumadin.

              3. Amazing parallels in so many areas of our lives.
                I am glad that you don’t have to take the MTX.. it really sucks. I go to check monthly too as the mtx is so hard on the liver.

              4. I know.. it is sad how debilitating it is. Yet, it has left me freedom in other ways that God has blessed me with, so I do not complain, but look for all of the good that has come from this.

              5. Yes I spent the first few years boo hooing. I decided to live n that’s what I do. I have time to write since I don’t work anymore. I just wish I wasn’t so foggy most of the time.

              6. I hear you. I fell into a terrible depression when I could not work anymore as I had always been the only provider and had done so very well at work. I felt robbed of my health, career and the ability to just function through my day…
                Thanks to God above, His loving hands gently lifted me out putting the right people in my pathway, and giving me the ability to express myself through (some rather dark – at the time) poetry. It was such a gift to be able to write of the pain. Such a gift to be able to write of His love throughout those darkest of moments.
                I find that when I am foggy, I start to pray in thanks and it works “put on the garment of praise for the spirit of heaviness…”

              7. I wrote some dark poems too. I give thanks for each day I wake and the nights I sleep. Lol. Lately I’ve been going to sleep later and waking up early. I know about walking I would love to walk but it wears me out.

              8. I feel good on the inside, but a bit tired, achy, but positive and recovered from seeing my daughter on Sunday. (What an awful thing to say – but true). I feel ready for a nap already!

Comments are closed.