Mirror image all the way!

                                         

My twin sister Julie and I are not only identical, but we are mirror image twins.  Mum said we were placed in a cot side by side and the mirroring was quite noticeable..

We have our natural hair parting on opposite sides, our teeth prior to dentures were mirrored, in fact our dentist put one X-ray of each of our mouths over each other and it was a perfect match!

I have a small mole on my left hand mouth edge and Julie has one on the right. Our profile is perfectly symmetrical when overlapping each other.

We have been known to throw a kidney stone from opposite sides at the same time as well. 

We still play the game if someone has an ailment, we know immediately which hand the other twin has a trigger finger problem with- always we guess the opposite to the one we are experiencing ourselves.  And we are right!

Mirroring each other has been a part of our life since we were quite young and it seems that it will be until our life finishes... and even in death, we will be mirroring..

Julie is sadly terminally ill with lupus and I have to have more heart stents which I have refused. As in life, so it will be in death... opposites.  

Unless the LORD raptures us both, Julie will have a drawn out passing and typically opposite, I will drop like a stone with a heart attack, going very quickly.

It has been fun to be a twin, particularly a mirrored identical one. It is and has been a source of both amazement and amusement. We joke about it and how it will be- mirror image all the way! 

© Glenys Robyn Hicks

I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well-Psalm139:14

Bother to lift us up and not tear us down

It amazes me how many people are uninformed about something yet feel compelled to give an opinion or advice about it.

When I got fibromyalgia everyone told me it was in my head. I pushed myself physically to get through it but the emotional toll was so bad. Guilt. Failure. Self loathing. Exacerbation of it all. In the end it was all for nothing: fibromyalgia is real.

How one talks to a chronically ill person is important as often they can take those words and apply it to themself, even if that person really doesn't understand about their illness.

Quite often speaking erroneously and negatively can damage a person so much that they actually feel worse. Those words have the propensity to cause so much emotionally destructive thoughts that cripple a person worse than the disease or ailment they suffer does.

Unsolicited advice such as starting exercising, dieting, positive thinking, all sound great for most maladies, but alas, not so great for chronic illness such as heart failure, osteoporosis, spinal stenosis, lupus and fibromyalgia.

Taking this on board for the person already grieving for their lost health can lead a person straight to the Pit of Despair. And it achieves nothing.

A little kindness would go a long way to helping the chronically ill retain self respect and accept their illness quicker. But most times those who give advice are anything but kind, sounding judgmental and arrogant. Which just expounds on how truly unhelpful they really are- or try to be.

Being kind and gentle to those suffering is Christ's way- so if you think you have enough knowledge and love to impart some wisdom and instruction to a chronically ill person- do so gently and kindly.

God Himself knows we have enough to contend with already as we walk the sad and lonely path of illness. We need less words and more acts that impart sympathy and compassion.

Pray for us and comfort us and be one of the few who bother to lift us up and not tear us down.

© Glenys Robyn Hicks 

And Jesus went forth, and saw a great multitude, and was moved with compassion toward them, and he healed their sick. Matthew 14:14

We just have to embrace it

We have been looking for another house closer to family. We have applied for one yesterday and had a phone call from the real estate this morning which sounded positive. 

Our fiver got to South Australia to its new owner and they rang us to tell us how pleased they were with it. So that's good. 

We are taking our GMC Sierra to the mechanic for a good overhaul Monday and then we will decide what we will do with it. Over here they are seen as a luxury ute and we think a young buck would love it. That's what we are hoping. 

My twin and son and granddaughter continue to recover from Covid but are still very much under the weather with it. 

I am convinced that our prayers have helped keep my twin. She's so many serious health issues such as lupus and I was afraid for her. 

I have done a load of washing, cleaned my kitchen and am about to make some lunch.  I have a flare of fibromyalgia again and my spoons are nearly all gone.  I will be  taking a nana nap soon.

With an imminent move, I am not looking forward to the energy output, however I am looking forward to being nearer family.

I will miss the birds and our feral cat who is gradually becoming less timid as we feed him. We have named him Teddy Bear as his face is surrounded by bushy fur and he is gingery brown and looks like a teddy.

But I know in  life that one rarely gets everything one wants and so we have weighed up staying or moving. We have decided that we want to be closer to family, particularly our daughter who has had leukaemia.

With a bird bath/feeder and garden swing to take with us, we will continue to feed the birds as we watch from the swing in the garden.

It's true what they say: nothing is sure except death and taxes. Life is full of change. We just have to embrace it.

Or should I say, how little!

It's Wednesday morning here. I have cleaned my kitchen and taken meat out to thaw for dinner. I am going to cook pork chops with mashed potato and greens with gravy.

My sister's son came to visit her for Mother's Day. He brought some homemade scones with cream and jam for her and my nephew to enjoy. They share a house together.

During the visit, he shared that his own son is at home with Covid. Yesterday, he rings and says he's now positive too. With lupus, fibro and other diseases, and with my son with breathing problems, they are worried that they will catch it too. They aren't vaxxed. So far my son and my sister are OK but are getting some RAT's this afternoon. 

Chris is sleeping sitting up on the couch. He really needs to go back to the doctor as he's feeling like he's drowning in fluid. I have been encouraging him to go, but he's very stubborn. Consequently, he doesn't get much sleep and can't lie down. 

It's hard looking after him because of this fear of doctors and hospitals. It's not like he's a child and you just take them....

There's not much else planned for today. My fibromyalgia pain is bad. I'm so glad at this stage of my life that I can decide how much I will do each day. Or should I say, how little!  

I know how she feels

So, many moons ago, my ex-husband and I used to go every Saturday to see our eldest son play football. On inclement weather days, I  would sit in the car with a friend I had made. She came to watch her son play as well.

We would chat during quarters and half time and I had noticed that she had no wedding rings or jewellery of any kind. I knew she was married because her husband and mine would watch our boys together.

She was a bit of a sour puss to be totally honest. Perpetually moody and very negative. I couldn't understand why because she looked well and dressed nicely. There was something about her: she was a bit odd.

Anyway, during our talks she said she was perpetually tired. Bone tired. She didn't work outside of her house and only had one child and he was almost a teenager like our son. What could be making her tired?

Years before the mobile or cell phones came in, I asked her what she thought the time was. She pulled her watch out of her pocket and I couldn't help but ask why didn't she wear it?

She replied that she cannot wear jewellery of any kind. It drove her nuts. Her muscles ached constantly and she was in pain and was being treated for depression. The doctors couldn't find anything wrong with her in spite of oodles of tests. 

For her treatment, she was under the care of a psychiatrist who said she had some form of mental illness that bordered on OCD as well as depression and fatigue. Then she was labelled as a hypochondriac.

She was on strong pain killers and also Valium and anti-depressants. Nothing seemed to help and she told me she had to force herself to come and see her only child play each week.

I thought she was rather weird to be honest. I mean why can't anyone bear to wear even a necklace or wedding ring or watch? Mentally, I lumped her in the acquaintances category, rather than a girl friend.

One day she told me she was having trouble sleeping and she needed to sleep off her medications but often felt groggy and muddled during the day. So, I offered to pray for her. Well, she blew up at me and screamed, "There is no God! If there was, he wouldn't have let my brother die in a fire on an oil rig!"

I was told not to pray for her again and as she was very vitriolic, I decided to sit in our car from then on. I didn't need her anger and aggressiveness.

This was in the 1980's and fast forwarding to 1999, with the identical symptoms as her, I was diagnosed with fibromyalgia after many tests for Lupus. I had never heard of it. 

Psychiatric assessment wasn't even muted and I confess I felt a sense of relief at that. It was a medical condition for a nasty painful syndrome that I now know that poor woman had.

It all fell into place: a trauma that ended her peace, the body aches, fatigue, irritability, skin that could not bear being touched-and it excluding wearing jewellery, no restorative sleep, and brain fog with cognitive difficulties.

In those days, when fibromyalgia was not even heard of by the general population and doctors weren't trained about it, fibromites were treated with disdain and were labelled with munchausens and other neurotic labels and as a result were often overmedicated with anti psychotics and Valium.

After being diagnosed myself, I remembered this poor woman and I confess I too labelled her as a hypochondriac and malinger and possibly suffering from munchausens as well.

I am so glad that fibromyalgia is much more known and is treated as a real malady and not a psychiatric disease. Yes, we occasionally are still misunderstood, but not as much.

Since I found out about fibromyalgia, I still pray for that poor woman and I thank God that at last she would be heard. It's the least I can do for her, now that I know how she feels.

© Glenys Robyn Hicks

Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers. 3 John 1:2

Big Brother has got us covered

My twin sister has lupus but she has no mental impairment with it. The other day, she received a letter from the Australian Government body called Aged Care. They informed her that she was to attend a meeting of a panel of health care professionals who would discuss her ability to stay in her own home. The final decision would be taken by them and not including her, and would involve her moving into a nursing home. This in spite of sharing a home with my son as her carer.

Shocked, she rang them and said not to bother. She didn't want their help. I am also getting Home Help from the same Body and I rang to cancel my records with them. They said they could make my record inactive which meant no one can access them, but as they became property of the Commonwealth of Australia, they couldn't be deleted.

I got them to make mine and Chris's records with Aged Care inactive and my sister did the same. It means that I no longer am eligible for Home Help and I am now paying privately to have a cleaner once a fortnight. It is a small price to pay in my opinion.

We cannot get over the high handed methods used by the Australian government in denying a client in their Aged Care plan their right to make decisions in their own life when there are no problems with that client's acuity.

When important decisions have to be made, Chris and I will consider all our options and cover it in prayer for guidance. We will not let some strangers take it out of our hands.

Sadly, Australia is now becoming an authoritarian regime and Big Brother has got us covered.

© Glenys Robyn Hicks

Do not cast me away when I am old; do not forsake me when my strength is gone. Psalm 71.9

He's no hero!

As you probably know, I have been seeing a rheumatologist to see if I have SLE lupus as well as fibromyalgia. It has been a long voyage. I am due to see her again July 16 for the results of all the blood works.

Today I saw my GP who I was told had the results. It was a disappointing visit and a waste of time. The only thing he would tell me was that I have severe arthritis in my hands, which was a given seeing as they are bent and deformed.

He would not commit to deciphering any of the tests, claiming that he was just a general practitioner and not a rheumatologist. So I am none the wiser. After reminding him of my various symptoms, he told me that even if I prove to have lupus that it won't change the fact that there is nothing he can do for me. It was very depressing.

Further, my husband Chris has had tests for shoulder pain that radiates into his ribs and back. He asked if an ultrasound might help throw some light onto what's causing his discomfort, but he laughed and said he didn't think so! So Chris also felt neglected.

I am on five tablets per day to lower my blood pressure, which he knows, but I had to ask him to take my blood pressure and he sighed as he did it. When asked about coping with the pain of my arthritis, he recommended a "conservative approach": no prednisolone or opioids, just paracetamol! Seriously?

This man came highly recommended as Chris and I have serious health issues that require good care and monitoring. Today has proven to us that he is not the super hero he is touted to be. 

Fortunately Chris and I are each other's hero and advocate and it is just as well. Looks like we will be looking after each other's interests long into our dotage. 

© Glenys Robyn Hicks

And if one prevail against him, two shall withstand him; and a threefold cord is not quickly broken. Ecclesiastes 4:12

Modifying the Proverbs 31 woman

The Proverbs 31 woman is an example of a godly wife. It’s not something we are going to be able to do all at once and for some of us, we may never accomplish all she did. But I believe emulating her example is a good thing. We have to have a goal. If you aim for nothing, you are always going to hit it.

I used to get up real early, about 4.30 to get my husband off to work. I would have my quiet time then before my 4 children would wake up.This worked for me when they were quite tiny too and I just carried it through. Until about 20 years ago when illness came in.

I don’t sleep well and wake up in lots of pain and I find if I try to get into the Word the fibromyalgia/Lupus brain fog makes it impossible to focus. I don’t glean much from the Word and my prayers are disjointed. I put on some praise and worship music and just thank the LORD for giving some sleep and so on. After a hot shower and breakfast, I can study the Word and pray better.

I think anyone with an illness or pregnant, or who has had a sleepless night with a sick child etc, has to be realistic and in tune with their body. She has to know what her own limitations are and modify what is an excellent goal to achieve it.My modified morning routine now works better for me. And let’s face it, any time is a good time to be in the Word! We all have to work out when it is best for us….then do it.

My time of choice would be early mornings though. But I have had to learn to modify things in order to achieve them. And later is better than never! I believe that for all of us women trying to live a godly life, the Proverbs 31 woman is a guide of what to strive for.

Even if we can’t achieve all she has done (and you will notice that she achieved this over seasons of her life- not all at once!), still our hearts will be in the right place. If women look at the whole picture with the view of doing it all NOW or not modifying it for themselves, they will most likely give up and not even try to emulate her example.

Sometimes there are unresolved heart issues that the LORD has to work through with some women who won’t even try to emulate the Proverbs 31 woman. Not even with modifications.

It may take some time until they are convinced that this holy calling in their lives is truly for their own good and contentment. Sometimes it takes a lot of washing with the Word before the soil of the world is cleared out of some women’s eyes. They just need some encouragement as God works in their life.

© Glenys Robyn Hicks

She will do him good and not evil all the days of her life. Proverbs 31:12

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 

I am in a hard place!

These last few weeks have been difficult to say the least and as I sit here this Tuesday morning my body's aching and my fingers are throbbing with arthritis, plus, I have the usual fibromyalgia flare. 

I feel every day of my nearly 66 years and wonder how I am going to cope with another decade or so that I probably have left of life.  My house is in need of a good tidy, and I can't do it.

There is washing to fold and put away, dishes to put in the dishwasher, cat kibbles to clear up from when the cats fought over the same dish of food. And their litter tray in the laundry needs emptying. 

I forgot a word I was searching for in the doctor's yesterday and the air hung in pregnant silence. It was embarrassing, but my mind is suffering fibro brain fog and I don't look sick, so I didn't mention it.

I am so over being ill. Striving to be normal sucks. I am depressed. I admit it. And today, writing this, I feel like throwing in the towel.  If you feel led, please pray for me. God feels far away today... I  am in a hard place... 

© Glenys Robyn Hicks

In my distress I called upon the LORD; to my God I cried for help. From his temple he heard my voice,and my cry to him reached his ears. Psalm 18:12

Why yes, I do wear dresses only

Every woman eventually finds her style. Whether it be modest, immodest, fashionable, or vintage, she will find that which best portrays her belief system in her world-view and body image.

With being at the end of my 65 years, I have found a style of dress that suits me. And by saying "me" I also mean my husband, Chris. I try to dress in a way that he likes as I want him to like what he sees.

Although I would have loved to wear skirts and dresses a long time ago, it is only recently when I needed to replace all my slacks, pants and jeans that he agreed to me buying skirts and dresses only. It's no good me dressing how I want if he's not happy with it. 

Speaking of which, Chris would never comment negatively about my appearance, but I figure in spite of my large size, I owe it to him to try to dress attractively. As his wife, I want to be a crown to him and not let him down through looking like I had just been caught in a hurricane. I want to bring him honour and having a wife who looks like a crumb to my mind isn't very honouring.

Anyway, I found modest but pretty ankle length skirts and summer dresses with string straps,   which I partnered with cotton lacy bolero tops that covered my beefy arms and made me feel more modest without sweltering in our Australian summer.  For my Australian friends, I can recommend Millers who cater for plus sizes up to 24 and who accept Afterpay.  

With my ankle length skirts, in winter, I can wear leggings underneath them and top them with a cardigan or jumper (sweater). I team that with a matching scarf around my neck. You can see my picture here if you wish.

I also found a modest pair of bathers with a long skirt around them. This is a wonderful help to me because I am very self-conscious of my large size and prefer to keep as much unruly flesh covered as is humanly possible when I go to the hydro therapy pool for physio.

My lupus has flared and I am losing my hair again. It has grown to about 12 inches from below my shoulders but is very thin. So I have been sweeping it back off my face and putting it up in a pony tail. Sometimes I roll it into a bun or French roll to keep it off my neck. My fibromyalgia makes me itch so much if the hair touches my face, neck or shoulders, so I try to keep it up and off my face.

I am almost completely silver in the front of my head now with a silver streak down the whole side on one side only. As I am allergic to hair dyes I am not dyeing it. Fortunately, Chris quite likes silver and often tells me so as he puts my hair into a bun. Chris helps me for with polymyalgia rheumatica, I cannot extend my arms for too long!

Regarding covering my hair, Chris was not happy with head coverings, hair bands or scarves but encouraged me to grow my hair, which I have done. As I said, I keep it up. I am saving to buy some Lilla Rose Flexi clips... I love those but they are a bit pricey! 

Wearing only dresses and skirts is not legalistic with me. Pants or skirts are not a salvation issue. I believe as long as a woman dresses  modestly and femininely, it is pleasing to the LORD. But I feel more feminine in skirts and dresses and I love that the straight lines and length help hide my extra curvy hips and legs. Jeans and slacks accentuated my stomach and made me look like I was expecting- (Sarah the Second!)

I wear a little makeup on a good day and always have earrings and my wedding rings on. I cannot wear jewellery round my neck or wrists because of the fibromyalgia making me itch badly. I wear flat sandals, even in winter as my heart is failing and my legs and feet swell badly.  Overall, my style is not too fussy, but well kept and clean looking. I am happy with it and so is Chris. 

All in all, my style looks like the picture at the top, without the hat. What's your style?

© Glenys Robyn Hicks 

She maketh herself coverings of tapestry; her clothing is silk and purple. Proverbs 31:22

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

Going against nature: androgeny

                                                   

Have you ever walked down the street and done a double-take when someone walks by whose sex is indistinguishable? Doesn't it just grate on you as you search frantically to ascertain the persons' gender? It's almost an unconscious compulsion isn't it?

Why is it so? I believe that God has decreed that all things should be natural. I believe that God has decreed that all things should be natural.It is natural to see a definition of gender, from clothes to hair length to deportment.

When I was ill (under active thyroid/lupus) and losing my hair, I cut my hair really really short in an effort to save it, (which I did) But I remember the reaction of shock and horror of my family when they first saw it! My step-father in particular remarked to my mother that he didn't know how any woman could do that to herself! I later told him of my hair loss problem, and he could see my point.

So strongly did my mother feel about it, that she told me if I ever cut my hair like that again , she would never speak to me! Going against the natural order definitely rattles most people because we instinctively know that God has provided definition of the sexes and is very explicit about gender differences and keeping those differences. In fact, He calls cross-dressing etc an abomination.
The woman shall not wear that which pertaineth unto a man, neither shall a man put on a woman's garment: for all that do so [are] abomination unto the LORD thy God. Deuteronomy 22:5

I believe that we should dress in a manner that is not only modest, but that preserves the differences of the genders. Whilst there are many opinions on what that dress consists of, I will make a generalisation here, and say simply that our dress should emphasis our God-given gender in whatever culture we live in. I say this because in some countries, a woman can wear pants and still retain her femininity, and a man can wear skirts or kilts and still be distinguishable as masculine. However, there should be no doubt whatsoever in distinguishing our gender.

If it is important enough for God to mention this in scripture, then we should take it to heart and avoid unisex clothing that tries to negate gender differences through total androgeny

So let  us  rejoice in  our femininity and  teach that to our  daughters and  granddaughters,  and let  us encourage  masculine  dressing  of our  sons and grandsons.  Not only will society benefit, but it will please God.

© Glenys Robyn Hicks