Celebrities making Lupus known

Dear Lady Gaga,
I just finished watching your interview with Larry King on CNN. If you knew me, you would know that running to the computer and vocalizing my thoughts to family, friends and even to you is nothing unusual! I have chosen to step up and “out” (so to speak) about my life with Lupus. Sometimes my story of Lupus is positive and sometimes it is negative, but in the end it is my story. If by sharing my story, it means that at least one person does not feel alone, I feel blessed to have been given the chance to help.

Many times I have heard from readers of my website or my writing that I have typed words that they could not speak aloud. Some have sent email messages and letters telling me that I have given a language of understanding to their support circle. As wonderful as that is, I still am the same girl, and many times feel very alone as I write at my desk. It seems I can help others, but I find it hard to help myself.

I want to thank you because tonight you put a “face” to something that I try to give a “voice” to. I watched your interview and waited anxiously for what I had heard might be a discussion involving you and lupus. Well, to my delight, Mr. King wasted no time and jumped right to the million dollar question.

Note: For my readers who might not have seen or heard the interview here is the transcript:

Gaga: I’m okay. Thank you, Larry. How are YOU?
Larry: I’m okay. You look great… there was a story about lupus or something. Do you have lupus?
Gaga: You know, lupus is in my family. It’s genetic and… um… and the truth is I don’t show any signs, any symptoms of lupus but I have tested borderline positive for the disease. As of right now I do not have it, but I have to take good care of myself.”

Miss Gaga (or should I call you Lady?), I have written countless paragraphs on the topic of lupus, but in your three sentences, you sent the world abuzz about Lupus. You immediately got people talking. Finally, I was the one who felt heard, validated and not so alone. Now, I “get it” when I think of the people who have thanked me, and now it is my turn to thank you.

To date, there has not been one celebrity to bring as much discussion, focus, and awareness on lupus as you have. Most celebrities want to “look” perfect and do not want to have their name associated with a specific health issue. In the interview, you answered the question with grace and a bit of “personal respect”, and I appreciated that. The world doesn’t need to know your business, but addressing the issue rather than side-stepping it helped more then you will ever know. You spoke on a huge media platform about a disease that I struggle with constantly. You are glamorous, creative and a showstopper, but for a few minutes you were right alongside me and I was not alone in my Lupus fight. I love you for that.

Your openness about the disease is good for whoever tunes in to the interview.

Those who knew nothing about Lupus will now at the very least Google the word Lupus out of curiosity and hopefully read some informative and accurate information.

* Your fans (little monsters) can also become educated about this cause and be a dynamic and enthusiastic group to champion lupus awareness.
* For me and for millions who live with lupus you validated a very “unknown” and sometimes un-believed disease. Unfortunately in this world, some people don’t acknowledge things that don’t impact their immediate existence, until they hear about it on television.
* Lastly, for those like me who have Lupus, you have become a beacon of light for this dark disease called lupus that is often misunderstood, and is in desperate need of attention.

I will now admit that I am one of your “closet” fans. I listen to your music when it comes on the radio and sing along as if there was a stadium full of screaming fans in my car. I dance around the kitchen with my 2 year old daughter as she giggles the words “baby gaga”, and I smile. I watch the award shows and admire and envy your ability to be yourself, push boundaries, and most of all have fun doing something that you love. I admit I had never purchased an album or concert ticket previously, but after seeing this side of you, I immediately went online and bought your cd– I even passed on the temptation of searching for free downloads! I want to support any celebrity who supports those with lupus.

I didn’t realize, until I started reading about you tonight, that we have more in common then I would ever think – me a stay at home mom and writer, and you, a superstar. I am from a good Catholic New York Italian family and we both went to New York City High Schools. (I went to LaGuardia Performing Arts). Your Aunt Joanne died of Lupus; my Aunt Margret Anne is living with lupus for years. Both of our Aunt’s have obviously touched us deeply as my aunt helped me get diagnosed. Even before you became a signed musician or worldwide star, you acted like one.

Even before I was an “official” writer, speaker and lupus advocate, I acted like one, starting with one article, and one follower (who happened to be my mom). You are known for saying “I want to change the world one sequin at a time” and I make my personal mantra to change the world one person, one word at a time.

I was “borderline positive” for years before I received a proper Lupus diagnosis. I am so happy that you have had no signs or symptoms of active disease, and I hope you never do. I do want you to continue to work with your doctor and be monitored for lupus. I want you to know that according to both the Lupus Alliance of America and the Lupus Foundation you do not need a positive ANA blood test to be positive for the disease; you need only four out of the eleven criteria to be diagnosed. No single laboratory test can definitely prove or disprove SLE.

I want to be clear I do NOT want you to have Lupus. I do want you to know that I personally, as well as millions of others with Lupus, thank you for bringing attention to this very “unknown” disease.

I wish you the best of health on your tour. I want you to keep making music, keep people thinking creatively, and most of all, just keep being you. Thank you again for the “three sentences heard round the world” that brought attention to lupus and helped me not feel so alone.

I hope you never have lupus, but if you do, I want you to know that you have a new fan, and a Lupus friend to talk to. You can contact me anytime!

Love,
Christine

PS- I would love to interview you about you, this lupus scare, your Aunt Joanne, or anything else you would like to talk about when you are in NYC. from But You Don't Look Sick

With the Psalmist, let us dwell on God for our strength as we cry, "I love you LORD my strength!" Psalm 18:1

Blessings, Glenys 

From my heart to yours

If you suffer from chronic pain as I do, do you sometimes feel less worthy as a woman, wife, mother and homemaker because of your illness? At times like these, fibromyalgia/CFS, lupus and heart disease can cause chronic pain, and can become very lonely diseases. And self-fulfilling ones.

It does seem unfair that not only do we have this accursed disease but that we feel obliged to defend ourselves constantly! Sometimes even to doctors! Families can often be the worst with their taunts about being a hypochondriac and demanding we get a job! Why don’t they realise just breathing is a job some days and besides which, your joints and muscles feel as stiff as a statue??

 Because I walk in your shoes, may I offer you some advice and comfort? Which I know you need as you bear one of the heaviest loads imaginable: chronic pain and illness whilst trying to be a good wife, mother and home maker.

My friend, are we not the best of loving wives and mothers, homemakers, servants of our family and the LORD? We don’t throw in the towel and give up because we can’t- we have our families and home to look after- but we draw on all our innermost reserves to give to our families what is needed when we just want to crawl back into bed and vegetate. Do we? Not as much as we want!

We show great devotion, endurance, and self-sacrifice with our limited energy and draw closer to God than perhaps most healthy women would do. Why? Because it is harder for us! Isn't it more valuable in spiritual terms to deny oneself the rest and ease we would love to indulge in, than to achieve the "honour" of having the most spotless of homes etc with relatively little cost as regards personal denial and physical pain? Kind of like Jesus's parable of the widow's mite- she gave all she had and the others gave of their abundance! Do you not see the correlation? We give our all, not just a little of the abundance of our strength. Surely then for us, are we not more worthy of honour and appreciation? I would say so!

And so I would encourage you to realise that you do not have to take the taunts and demands to heart, nor let it settle in your spirit. You do not have to defend yourself incessantly to anyone, because you are doing far more already than most people of lesser fortitude would do. Furthermore, God hears our sighs and pleas, He knows we are but dust and knows our frame- He most of all identifies with our weaknesses!

Will He not say "Well done Thou good and faithful servant" Matthew 25:21  to us who struggle to serve others every day when our flesh cries out for compassion and being served ourselves? In moments like these, I cling close to Christ and let His compassion and grace wash over me afresh- for without His closeness I would never get up some mornings! With the Psalmist, let us rely on God for our strength as we cry, "I love you LORD my strength!" Psalm 18:1 I pray you feel His loving help. Sending prayers from my heart to yours!

© Glenys Robyn Hicks

Fibromyalgia is real!

When I read a blog post (Fibromyalgia Negative Press) – citing a newspaper columnist’s remark about people with Fibro who want to collect a government check and pop pills (Random Nonsense) — I thought: I’m glad I live with multiple sclerosis!

After several weeks of deep pain and fatigue, I’m actually grateful to live with a disease that people believe exists. I mean, I could have fibromyalgia or CFS! Not only would I have these miserable symptoms but people would doubt me. Worse they might label me lazy or crazy.

When I told my neurologist about the recent “flare” in symptoms, she suggested an MRI to see if there might be new MS activity. Because it’s MS and there are tests that show disease, I can be confident that my healthcare providers all agree on this point.

But my client withfFibromyalgia, who is a senior executive, finds that although her rheumatology doctor fully supports her, her other physicians seem sceptical about the diagnosis. And she never mentions it to her colleagues because of the odd reactions she’s gotten.

I’m tired of the demeaning remarks about people with Fibromyalgia. The common thinking is that this isn’t a ‘real illness’. I’ve heard all kinds of people say that fibromyalgia people are depressed, difficult, even a little crazy. I’ve heard healthcare professionals say that Fibro patients are their toughest. Others say that there’s a “Fibro” type who doesn’t seem to want to help her/him self.

What’s up with this? Maybe it’s a chicken and egg thing. If you haven’t lived with invisible, unpredictable and waxing & waning chronic illness -pain, fatigue, mental issues – you don’t know how crazy making it can make even the sanest person.

When I’m not well, I’m not the same person that I am when I am well (just ask my husband, my kids, the people who work for me!). When I have symptoms that don’t improve quickly, I can lose hope and feel depressed. When I see a doctor who tells me that I’m difficult to treat because I don’t get better quickly, I want to scream. I know I become a more irritable and difficult patient.

I imagine I’m better able to manage my responses better than most, due to my training and what I do for a living. But my symptoms derive from ‘recognized’ diseases with objective findings. It would be that much more difficult to confront a world that doesn’t believe my symptoms are “real”.

As it happens, for some completely inexplicable reason (certainly not due to a change in wet weather), I woke up two days ago feeling much better. The back pain is still there but improving and the fatigue and heaviness are gone. I’m grateful both to feel better and to know that no one doubted that my symptoms were due to some underlying disease state. At least, not that they said :)

What do you do when you face the sceptic? Have you experienced people at work who think you’re trying to get out of work by “faking” it or making a big deal out of nothing? Or who don’t even believe that what you’re living with is “real”? Share it. by Rosalinde Joffe

Bravo!Well done!

Blessings, Glenys

'Though He slay me, yet will I trust Him' Job 18:15a

Lupus: a hard one to call

Over the past 15 years, I have had so much trouble with aching joints and muscles and tiredness that I have had several series of blood tests for Lupus. Fifteen years ago I have been diagnosed with severe fibromyalgia but there is a question mark over whether I have lupus as well. I am sick of going to the doctors and not being taken seriously.

In spite of getting repeated highly suspect blood results, I am still waiting for a diagnosis. Two years ago I went to a local rheumatologist to get a second opinion. He told me he thought I may have it and asked what my original rheumatologist Dr H thought. I told him she said she wasn't sure and therefore diagnosed me with non-specific connective tissue disorder.

Straight away, he announced that he too thought I didn't have it: after all he had gone to school with Dr H and she was an honours student- if she wouldn't call it Lupus, he wouldn't. I left totally frustrated! And not helped at all. It was an expensive and futile visit.

For anyone who has a diagnosis of lupus or who cares to read further, here are the reasons I believe I have it. Posts are written by myself on But You Don't Look Sick Board.........

Hi. I have been to a rheumatologist and was told that I have Unspecified Connective Tissue Disease and she is not ruling out lupus.

My symptoms are:

extreme fatigue

fibromyalgia

dry eyes and skin

+ANA- has tripled in 12 months

constantly elevated ESR (mild)

diabetes 2

hypothyroidism

cardiovascular disease- 3 stents inserted in Oct this year thrombosed radial artery after angiogram

antiphospholipid syndrome

polymyalgia rheumatica

worsening fatigue

sunburnt look across my nose and cheeks

maddeningly itchy raised rash on my back and spreading out to shoulders, and now going up nape of neck and into my scalp- scalp is bleeding from scratching it

severe muscular pains and sore finger joints

swollen glands at back of neck and behind ears

difficulty focusing on things

one lot of eye styes after the other

Mesenteric panniculitis

Dermagraphia

Grape like blood filled sores in back of roof of mouth that burst and ulcerate- no injury, just happen

Painful fingers- one cant extend straight- wrists and neck and toes ache but not positive for RA

Butterfly shaped MILD transient rash like sunburn after being outside or tired

Extreme fatigue like fibro flare but lasting a month now with mesenteric panniculitis symptoms again

I am not anaemic though. Does this mean I don't have lupus? does it sound like I do have it? I dont want the disease per se, but maybe if I finally got a diagnosis, they could treat it.

Last year I had a return visit to Dr H and she scarcely looked at the results but seemed obsessed with the fact that I have had 3 stents put in my heart and am obese. She said she would put me on Plaquinel if I continued to have pain. I do not intend to consult her again. She diagnosed my identical twin as just fibro, and she now has full blown lupus SLE. My cousin has it also and one cousin has a granddaughter with it... so there is a very strong family history.

Fast forward to today and nothing has changed except I am losing my hair at a rapid rate. My left leg is visibly swollen and painful. My ANA and ESR are even more elevated. I have antiphosphilipid syndrome but most other tests seem OK. Though one with a River Viper serum (?) was abnormal.

The ANA+ was 1:80 in 2005 then 1:323 in  2015 and this latest one last month is 1:600 . There seems to be a lot of inflammation but he doesn't know what is inflamed. Tomorrow night I am going to see my doctor and Chris is coming with me. There are now issues with my bleeding too easily. Blood thinners are too potent for me I think. I am a mass of bruises! I cry with joint and muscle pain.

I know lupus is a hard one to call but I want an answer and am requesting more tests and a new rheumatologist. This time I won't tell him about Dr H! Any thoughts and prayers are always most welcome. I just want to be without hurting!

© Glenys Robyn Hicks

Bless the LORD, O my soul, and forget not all his benefits: who forgiveth all thine iniquities; who healeth all thy diseases; Psalm 103:2-3

I'll be a joker for Christ!

Those of us who have been Christians for some time have probably been the butt of jokes of unsaved family and friends. We are often openly laughed at and made fun of. It can be depressing as well as humiliating.

Recently when I was clearing out my mother's belongings after she passed, a little plaque my mother had with "God Is Love" on it was passed down from her display cabinet. People who were helping wanted to throw it out into the give away to charity pile. Then one of them started laughing and said, "Sure, He is! huh, who wants this?" (laugh laugh)- then she said, "Oh give it to Glenys, she'll take it cos she believes in this sh*t!" Feeling a tad hot faced, I took it and put it in my handbag to take home with me. Their smirks weren't lost on me either! (No fool like an old fool, right?)

Likewise, when cleaning out the bookshelf, they saw the old but well preserved Bible and were going to pitch it out. I hurriedly sprang forward and claimed it, much to their enjoyment. It went alongside my handbag to find its way to my place where it would be placed in a place of honour and easily accessed.

Just recently I had an irate family member declare that she won't follow my posts on Face Book because they "are too religious" and she "doesn't think it's right to have it up on Face Book". However, I would prefer to see them than her endless selfies and pictures of her rather prominently displayed bust.  Come to think of it, maybe this was the reason my estranged brother unfriended me from his Face Book yesterday. How he describes Christians is unprintable here....

All in all, I sometimes feel that there is a conspiracy amongst unsaved family and friends in keeping our faith at arms length, and any chance to degrade, hurt, ridicule and humiliate us is taken. We are fair game, people. Yet we cannot change our life style, if we truly believe.

If we believe, we will be Christ-like, and to the unsaved, this is a threat. For Christ-likeness shines His light over their darkness, and they are exposed. This is very disconcerting to the person whose heart is far from being saved. But rather than retreat, we must advance and keep being faithful. Who else knows them like we do? Who else but us bearing Christ in us, would want to see them saved? Who would forgive? Who would pray? And yes, even love them?

It's not easy being a Christian today, especially with unsaved family and friends. We will have an extra cross to bear in humiliation, we will have our faith tested and our resolve to be loving will be sorely tried. And if the one who is unsaved and antagonistic to our faith, is our spouse, a sword will pierce through our heart over and over again.

We dare not take this treatment and derision to heart, for if we do, we may never see our loved ones come to Christ. We may not know that the Holy Spirit is wooing that person and that the barbs and derision are coming to the fore because of a spiritual battle within him or her. It often happens like that. No matter what happens, I must forgive and try to forget the laughter at my expense. 

I cannot change who I am now. I am Christ's, Who was also laughed at as He was whipped and stripped and refused to save Himself by coming off the cross. The die is cast for me, my path is clear. I am moving forward in spite of the jests and guffaws. Let them laugh: I'll be a joker for Christ! 

© Glenys Robyn Hicks

And the people stood looking on. But even the rulers with them sneered, saying, “He saved others; let Him save Himself if He is the Christ, the chosen of God.” Luke 23:35