Taking it up again!

You may remember that I had to give up knitting and crocheting as it hurt my hands too much. It was so disappointing!  

I was visiting my twin sister one day and I found her crocheting a beautiful baby shawl. Now her hands are sore with her lupus and arthritis, and when I asked her how she managed and  told her I could not longer knit or crochet, she encouraged me to take it up again. 

She assured me that her hands had improved since she took up her handcrafts again, and I resolved to give it a try. My hands improved and I had better flexibility in my hands and wrists. I was rapt! I needed to do something creative and those last few months

With fibromyalgia it is important to find something to take my mind off pain, and I find knitting or crocheting does that to some degree. I believe it is healthy and very satisfying to be creative and I have knitted, crocheted or sewn many gifts for family and friends over a lifetime.

I also enjoy blogging and so I thought to create a new one, highlighting a lot of those creations, mainly to remind myself of happy hours making and giving each one.

Currently I am working on making baby shawls and jackets for my grandchildren to use for their own children when the time is right... an heirloom gift or legacy if you will.

With being 71 years of age, I obviously don't know how long I will be able to continue doing this, so I am working on them now, either giving them directly to those old enough to keep them themselves, or to their mothers to keep until the time is right.

I hope you enjoy looking at my creations...

Keep clicking and stitching,

Glenys                    

 https://nanasclicksandstitches.blogspot.com/

More than a place to sleep

Recently someone asked why do we make our bed? I gave it some thought as I have recently been making my own bed daily, in spite of regularly going back into it for a nana nap. Here's a few thoughts on why I use my precious spoons to make my bed.

Physically its more comfortable to sleep in. 

Psychologically its more inviting.

It makes the room visually more esthetically pleasing.

The bed's the centrepiece of the room like in a painting. 

It gives the illusion of order and calm.

It uplifts my spirits when I come into my bedroom.

With fibromyalgia, angina and back problems, I make mine but often get back in it. So I remake it.

When I make it, I don't get on my knees as they are broken and I do not do hospital bed mitred corners. I pull up my top sheet, then turn back the minky blankets. With arthritic hands, the only tucks I do are at the bottom of the bed to secure the bedding...

But, being honest, I sometimes let it go when I have a fibro flare- being satified that the sheets and bedding is clean. But the majority of times, my beds are made. 

Beds are more comfortable made up or at least straightened and are more than a place to sleep.

It's a pain in the neck

 

Lately I have been trying to keep off the computer. I have had a horrid fibromyalgia flare and I suspect along with neck and shoulder pain, I have also got TMJ and polymyalgia rheumatica back as well.

We  recently sold our GMC Sierra ute and with no more vehicles needing a driveway to park on, we have turned our attention to finding another rented home. It has proven to be a nightmare.

There are not many affordable homes to rent and we find we are vying with up to 20 different people at a viewing, all hoping to get the same property. It is terribly stressful.

I think the stress has exacerbated my fibromyalgia. I have been clenching my jaw and this has seen my TMJ return. Without a blood test to check ESR creatines and so on, I can't say that my PMR has returned, but judging from the pain and inability to raise my arms, I would not be surprised.

I have done 5 loads of washing and dryed it in the dryer as it's too painful to hang it outside. I have run the dishwasher and been to the chemist to pick up my Januvia for my diabetes. Just that small bit of work has exhausted me. My spoons have left the building.

Lately I have been thinking it isn't worth moving, but the possums in the roof wake me up with their thumpings and scratchings and the cold weather has meant that central heating is calling my name and beckoning me to a newer more modern abode.

Just typing to you has stirred up all my sore muscles, and it's traveled down my arm. So I will be taking some paracetamol Osteo soon and maybe I'll be having a nana nap.

Fibromyalgia, PMR or plain arthritis makes for a bad day by any name. Whatever ails me, it boils down to the fact that today, it's a pain in the neck. 

 

"It is what it is!"

A friend of mine posted this on her Face Book wall and it was so simple and doable that I wanted to share this with you.

My hands are deformed with arthritis and I have little strength in them. Opening these ring pull cans have always been a challenge to me. 

Those cans that need a can opener are  simply not purchased anymore. I cannot use one as the arthritis restricts movement.

My fibromyalgia is paining me today and I didn't sleep well last night, so I will be cleaning my kitchen and psyching myself up to take a shower. That and cooking meals is all I will be doing today.

Meals will be Jewish Penicillin in my slow cooker.

It's not much to show for the vast amount of spoons I will need today, but as the young ones always say, "It is what it is!"

We have gone mad!

It may seem strange to some, but even in the worst pain, you will find me playing Candy Crush in an effort to distract my mind from the pain.

The rheumatologist suggested to my daughter who suffers from fibromyalgia and pain post chemo, to use it as a distraction from the pain. She was one of these mind over matters kind of doctors. We were not very optimistic to be honest.

As a sufferer of not only fibromyalgia but ankylosing spondylitis, spinal canal stenosis coupled with bad arthitis and angina, I thought it may help me. It helps a little. But Tramadol would be better!

My doctor won't let me have them. Even though he knows I only take them as required for high pain days like today.   He gave it to me when my second knee tore and it helped my fibro pain so much. Then he closed shop!  

I  know there have  been many who abused pain-killers but when  basic pain relief is available only with a chemist's approval such as Panadol with codeine, it makes life more difficult for the person like myself,  to get any relief at all. 

With fibro flaring and another episode of polymyalgia rheumatica, I have been tempted to take some of my Prednisolone, but I am worried about the side effects. I tell you truly, I am feeling desperate.

So even though you may see me playing Candy Crush or online a lot, I can honestly say that it's for  medicinal purposes. I will be a Candy Crush addict any day if it will relieve the pain.

Just don't tell the do-gooders. If they think we are liable to become addicts, they'll make FB take it off their site! You fellow pain sufferers know they will. We have gone mad in our correctness!

Hopefully it will work

So I have noticed that even on a rare good day with my fibromyalgia, I still have a dip in energy by 3 or 4pm. Usually that's my time to start preparing dinner. I simply run out of spoons.

Because I don't want to make eating frozen dinners the norm, I decided to try a new plan. I am going to cook a few weeks to a month ahead and freeze the meals.

Any day that I find myself having enough spoons, I will cook a few meals at the same time and gradually build this up to a month of meals in advance.

I know it's going to take a lot of planning, but I think in the end it will be worth it. I actually started yesterday.

Firstly, I went through my fridges and freezers and grouped meats together. Yesterday I made 4 meals each honey chicken with vegetables, potatoes and gravy, then another 2 meals of Mexican chicken with rice. Today I am going to bake the chicken rissoles and kievs and add mashed potato and greens.

The next day, God willing- and spoons available, I am going to cook some stews with a lot of vegetables, using up my pork and beef steaks. 

On the next Spoon Friendly Day, I plan to make up 6 meals with my sausages. I find my slow cookers- I have 3 of them, so handy plus they don't heat the kitchen up like the oven. We are in our summer at the moment.

I am not sure if I can freeze baked potatoes and bacon successfully, but if I can I will do that for lunches.

We will still be having salads with our meals but I buy the packet salads that are already cut and washed, and that not only saves on spoons but helps me with my arthritic hands.

I know this way is not a new thing to most people, but it is something new to me. Hopefully it will work. 

I am blessed

 

After a horrid day with pain from my fibromyalgia and arthritis, I gratefully sank into bed, pulling my soft minkie blankets over me.

As is my custom before sleeping, I prayed and thanked God for the good things of the day. And as I started to pray, the blessings of the day kept on coming.

I was and am thankful and grateful for so many things which truthfully are more abundant than the horrid things that make up my life of chronic illness.

The warmth of my bed and the softness of my blankets, the feather down pillow that allowed me to adjust it to just the right way to support my sore neck and shoulder muscles and the light that shone softly at my bedside all soothed and nurtured me. 

The outside light shone through the star shapes in my drapes, and the little stars lit up the room and danced across my bed as my chest moved in breaths and sighs of contentment. My little cat snuggled up beside me. We were both content.

How blessed I am to be able to lay my head down to rest in peace. So many the world over do not have that luxury. 

My soft minkie pajamas caressed my skin, soothing it and unlike other clothing, did not make me itch in a way that started an itchy frenzy. Only the Fibromite who suffers from constant itch would be grateful for that.

As I gave thanks for all those things, I remembered the labour saving devices I have been blessed to own, and along with that, I gave thanks for the many convenience foods and products that make my life as a Sacrificial Home Keeper easier. Not for the first time, I thanked God for allowing me to live in a country where these products are available.

I am grateful for the convenience of online banking, shopping and grocery purchases. Many a day finds me with limited spoons and I do not feel inclined to leave my home.

And when I have to get repeat prescriptions made up, I am grateful that I have an app that allows me to order them and pick them up later...

Our little country home nurtures us and gives me many comforts for which I am also grateful. And as the happy relaxed thoughts overtook me, I drifted into sleep, glad and secure that I am the LORD'S and He will be there tomorrow to bless me and console me as I walk the lonely painful path of chronic illness and pain.

There's nothing that can compare to counting one's gifts of love from the LORD. I am blessed. And grateful.

 

 © Glenys Robyn Hicks

 

For thus says the Lord GOD, the Holy One of Israel: “ In returning and rest you shall be saved; In quietness and confidence shall be your strength.”  Isaiah 30:15 

New Year prayers

It is New Year's Eve and like millions of people around the world it is a tradition to make New Year resolutions. I have resolved to try to lose weight. 

As a chronically ill woman who truly doesn’t eat much, my weight gain is mainly inactivity and taking Prednisolone and other drugs for depression and blood pressure etc. If I dwelt on weight gain and my consequent obesity, I would be so depressed that I wouldn’t have time to write for the LORD, or feel close to Him. 

Having said that, it is my intention to give my eating to God and ask for His help in making good food choices, and in self control.  I will try to exercise gently by walking and seeking out a swimming pool so that I can exercise without hurting my muscles, back and torn meniscus. It will be a balancing act so as not to bring on a new flare of my fibromyalgia or an angina attack. 

Because obesity can effect our spirit, I would say that we have to bring negative thoughts about our bodies and weight loss in general, into the captivity of Christ and not allow it to distract us from what He has for our life. 

In practice,  healthy weight loss will take time and it will be necessary to be patient with my body as it slowly releases the fat and comes into subjection. For it is going to be a battle: I know that, and it is a battle I simply must win.

In starting each day, I will be asking God for wisdom in what to eat and when. I will be making losing weight a priority after God, one which I know is in His will and that will please Him.

I am expecting a very slow reduction in my BMI, a very slow introduction to movement and a rather rapid new intake of water daily. In return I am expecting a reduction in blood pressure, pain with arthritis, depression, GERD, and lower HBA1 C for my diabetes. I am expecting a reduction in medications. 

Boring subject that it is, nevertheless weight loss is often so depressing and consuming that it can distract us from our relationship with Jesus. In fact, weight loss can become an idol. We must avoid becoming obsessive with it.

A new outlook has taken me to seeing that loving myself enough to lose the weight that is literally killing me is pleasing to God. He wants the best for me. So knowing this, I can rely on help from the Holy Spirit in putting an end to living trapped in a sick and grossly overweight body. 

Love for God and pleasing Him,  joy in obedience in the journey, peace in being proactive, patience in the struggle, kindness to myself when I stumble, will produce a woman who is feeling better and more able to be kind, good, faithful and gentle, through obedience to God through self-control. The fruits are there for the taking after repentance and obedience. 

Pray for me as I try to regain my health.  I pray you have a blessed New Year and success in your own resolutions, whatever they may be.

© Glenys Robyn Hicks

But the fruit of the Spirit is love, joy, peace, longsuffering, kindness, goodness, faithfulness, gentleness, self-control. Against such there is no law. Galatians 5:22-23

Telling it to our cat

As you probably know, we are in the process of finding a new rental to live in. We are currently living in a fifth wheeler, but I have torn my meniscus again and I cannot handle the seven steps to get in and out. I am practically housebound.

My mother passed away a year ago and I must say that I am still feeling her loss keenly. Coupled with my meniscus tear, exacerbated spinal pain because of the bed and stairs and pulled arm muscles from heaving myself up the three steps from the first level to the bedroom and ensuite, I have the Mother of all fibromyalgia flares with arthritis to boot. It has been one continuous flare since we moved in here four months ago.

My depression is compounded by the chronic pain which is constant and I have gained even more weight as I cannot move much. I am close to the Pit of Despair and something that happened yesterday didn't help me much either...

We had to go food shopping yesterday. Chris was bringing the groceries up into the fiver and I was slowly plodding my way towards the steps. A woman who has a caravan near us spoke to Chris then came up to me and offered me her hand as I painfully managed the stairs. I was so grateful and heartened that she bothered to help me. Not many people make the effort. 

At the halfway point wherein the flyscreen door swings out and one has to push it aside, I let go of her hand. I was telling her of the reason we were selling the fiver. At last I made it inside and I turned round to thank her, mid-sentence. She wasn't even there but I could see her almost at her caravan.

My feelings did a downward spiral as I realised I had been talking to myself and I felt again the loneliness of the chronically ill and disabled. From a fleeting feeling of respect and validation, I felt disrespected and my problems considered minor or of no consequence. The chronically ill or disabled will understand what I am speaking about.

We don't ask for constant validation and never ending compassion. We know that the "normals" who don't experience the pain and inconvenience of disease and disability, can't empathise, just sympathise. But what we do ask is that we be heard, respected and validated.  Nothing compounds our physical pain as much as being ignored, made fun of or marginalised. This is important to us..

The "normals" can even help prevent a trip to the Pit of Despair by showing a bit of interest and compassion to us, so please don't be like our neighbour in the caravan park who didn't want to know. 

I am not minimising the power of prayer, and we should pray and talk to the LORD, but we need another listening ear sometimes, but often people don't want to hear us and for all the good it does, we might just as well tell it to our cat. 

© Glenys Robyn Hicks

Bear ye one another's burdens, and so fulfil the law of Christ. Galatians 6:2

Confessions of a sick housewife

As you probably know, I am trying to cope with heart problems, arthritis, fibromyalgia and back problems. That should be enough to cope with, but added to that, we are moving house tomorrow to become grey nomads and travel round Australia.  But right now,  I am totally exhausted!

Furthermore, as I packed stuff and cleaned the house, I was appalled at how dirty our home had become! In fact, I cried! I would be totally ashamed to sit at my kitchen table to share a cuppa with you with the state it has gotten in. As I scrubbed my stove top and cleaned my oven, it occurred to me that I had no right writing posts about homemaking when my home was so dirty! This realisation coupled with fatigue sent me in a downward spiral which the Evil One was only too happy to escort me to.

Seeking to refresh my lagging spirits, I listened to the Word on CD as I cleaned and I cried out to the LORD. Literally cried. Although I felt no physical refreshment, the Word ministered to my spirit. I felt amazingly and unconditionally loved and I can't say I heard the LORD, but I did receive a definite feeling of understanding and compassion in my spirit. This came as 'self-talk' but it was not from my self. You just know when God has spoken to your spirit. He always encourages you even when chastising, and even in chastisement, there is always a way out and a hope! This never comes from the Evil One!

I felt that I was being too hard on myself, given the circumstances of my ill health. I questioned if what I write is true, and it is. It is something that I aspire to, try to achieve and totally believe. The fact that I cannot achieve this at the moment is irrelevant. My heart and spirit are in the exhortations that I write. Therefore, I am not a hypocrite. You have got to believe me when I say that this ministered to me so much, that I felt the weight of false guilt just roll off my shoulders.

I am battling so many things right now. Including fear of the future, death, worsening health issues and pain.  I do so desire you to uphold me in your prayers and not to think too badly of me as I confess these shortcomings to you.....

I am sorry that I have disappointed some of you with this confession..... sometimes things get on top of me! Thank you to those of you who are praying for me. Perhaps it was these prayers that have led me back from The Pit.

© Glenys Robyn Hicks


But if ye be without chastisement, whereof all are partakers, then are ye bastards, and not sons. Hebrews 12:8

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

No immunity for trials

None of us is immune to trials and tribulation. This week has seen a few trials overtake me that have rocked me to the core...

One is Chris. He has had an abnormal ECG following chest pain and angina that settles after Anginine under the tongue. There is some residual damage from a heart scare about 3 years ago, wherein he was discharged from hospital after being told all was well. Obviously, it wasn't. Chris is having another test today, a stress test. We will know more after that.

Then yesterday I was told that one of my beloved grandchildren has Tourettes Syndrome. Mild. But. Wow! A super grand whammy to the parents and myself. This came a day after my mother was taken to hospital with a suspected stroke and heart pain. She was discharged and told to rest. But I know she won't and the stress with her is disabling in itself...

With my illnesses, namely heart disease and fibromyalgia/lupus and polymyalgia rheumatica, the stress has culminated in a flare up of ill health.

I am in considerable pain. The Pit of Despair is looming, but I don't want to go there. After the initial whammy blow yesterday, I clung to the LORD. And I can say that He truly soothed my soul.
In faith, I am believing that Chris will be OK. And even if he too needs stents like me, well at least he too got a warning that all was not well instead of just dropping dead.

My grandchild is very clever and will be able to lead a normal life. Our main task will be educating family, friends, peers and teachers about it so that the child is accepted and not made to feel foolish or inferior.

My mother didn't have a stroke or a problem with her pacemaker. She had a bladder infection and gastritis. With rest and medication, she will recover.

The Pit of Despair was looming yesterday and was open wide last night when I went to bed. But I sought the LORD and He ministered to me in a mighty way.

In all this, I was able to thank Him and focus on that which is good.There is much to be done today as I face another busy day at home, and although I have been refreshed in spirit, my body is a different matter.

I just can't seem to stop it from going in flare up mode even after I have been comforted. The spirit is willing, but the flesh is weak.

At least I know that God knows how I am struggling at the moment, and has compassion on me.I have found that focusing on God's goodness and love is an important step when trials and adversity overcome me.

Without Him, I would not be able to function at all. I am so glad for our Saviour and the prayers of the Saints.

Speaking of which, please hold us all up in prayer. I so appreciate it. Together we can give thanks. But whatever befalls me: this I know, God is good! Which is just as well, because there's no immunity for trials...

© Glenys Robyn Hicks

These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world. John 16:33

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