Failing fast

You may have noticed I haven't been posting much lately. Fibromyalgia, heart disease, high blood pressure and now boils have taken over my body all at once.

My body is failing me and the fatigue is not only sapping my strength but my mental faculties. It is hard to formulate a sentence these days.

I have been to the doctor. My blood pressure meds have been increased (200/86) and that in itself makes me tired.

These days it takes me all my time to look after Chris and my home. Forget socialising.

I am on the strongest oral antibiotics, taking 9 a day. They have brought the boil on my spine to a head. I am waiting for it to pop itself, rather than try to squeeze it. Though I think I would die from the pain if we tried to do that. The boil is quite large.

I pace myself to try to eke out my meagre spoons but I find I just have to have a nana nap in the day to have enough spoons to cook dinner.

I am praying that I feel better for Christmas as we are having family here for lunch Christmas Day. Most certainly I will have to be stronger than what I am now. My body is failing fast.

Invisible illnesses hurt as much as a broken arm.

So yesterday I got my tooth seen at the dentist. I was overjoyed that she managed to save it. It was a gruelling 45 minute sit in the chair.

Those of you who suffer from fibromyalgia know that sitting stretched back with one's head tilted to the side is not an easy pose to stay in. Add ankylosing spondylitis and polymyalgia rheumatica to the mix, and it's a half hour of torture.

I must say though that the lady dentist was very patient, kind and efficient. I told her about my many ailments as required for a new patient, and I was amazed that not only did she know what fibromyalgia was, but was very careful to not touch my neck roughly. 

She also gave me double the novacaine because she knew I would be very sensitive to pain.

It so happens that her friend suffers from fibromylgia and she has a really bad time of it. To have the dentist allow me to sit up and have a rest every ten minutes was a blessing. In fact, she was a godsend.

She lowered the chair as far as it would go as I got out, and being aware of my torn knee ligaments in both knees, she helped me get out and stand up. 

Today, my tooth is not aching at all, but my jaw, ear and neck are. I suspect from the injections and keeping my mouth open for so long. I have TMJ as well.

Today I have been doing meals, cleaning my kitchen and folding washing whilst medicating with paracetamol. I have had to take it every 6 hours, but it is what it is. I am still better off filling the tooth as opposed to pulling it.

My plan for tonight's meal is to make a sweet curry pork dish with rice. Chris loves that and it's easy to do in the slow cooker.

My online shop will be coming in an hour or so, and I will put that away. That's it for today.

I loved that the dentist took fibromyalgia seriously. It's not often that it is. When you find someone like that, the validation lifts one's spirits. Thanks goodness some people believe that invisible illnesses hurt as much as a broken arm.

 

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's not a contest

Sometimes I feel guilty for letting off steam at times but I really believe I could have a bit more support than what I am getting. 

We sometimes have words during my fibromyalgia flares and when I have polymyalgia rheumatica at the same time, it can make me scream in desperation. I just want a hand. It helps me emotionally as well as physically and I feel nurtured.

I know my husband is unwell and he has my understanding and utmost sympathy. But sometimes, the pain gets so bad and I have so little spoons that I will yell at him to come and make his own cup of tea or whatever.

After words,  I often cry because I aren't usually like that.  Pain changes people.  Especially unrelenting pain. And unrestorative sleep. Especially that.

Yet, to those who don't know the desperation that pain drives you to, they would just think I was being unreasonable and using my fibro to elicit a response from Chris. 

It's not that at all. Our health issues mean that there are times when we have to help one another. And lately when Chris is not well, I find I am left to push myself beyond my own comfort level while he sleeps on the couch.

His pain is not at the same high level mine is. His health issues relate to other issues regarding heart problems. But his issues are difficult for him to bear. I know that. 

Chronic illness in both people in a marriage presents its own problems. Each one having pain that makes the eyeballs bulge, causes arguments of who'se pain or condition is worse than the other's. A form of validation if you will.

But here's the scoop about chronic illness. It's not a contest. Just another thing about chronic illness that most don't understand. 

Chipping away at the stone

So my fibromyalgia is back with a passion, making every muscle ache. I tried to take a bath a couple of days ago and I had great difficulty getting out. I had to use a pillow under my knee and I had no other option than to lean on it to get up. It was so painful and the consequences are enormous.

I know I shouldn't have tried with both knees with torn menisci and other ligament damage.  I was in so much pain that I longed for a bath to hopefully relax my muscles. It didn't. Nor did it help my sore neck with another episode of polymyalgia rheumatica.

This constant pain is wearing me down. My doctor is too afraid to give me pain relief and I am considering changing doctors. This creates anxiety in me. And to top it all off, I have been cranky and not really a nice person to be near at the moment.

With Chris ill himself, I seem to be carrying everything myself with no help in sight. Take this morning for example. I put on a load of washing, cleaned Xena's litter tray and unloaded and loaded the dishwasher.

Testing our blood sugar level before breakfast,  I asked Chris what he wanted for breakfast. He told me what he wanted, just sitting there waiting for me to get it for him. I am sorry to report that I arced up and told him to get it himself.

I added some other truths about him acting like he's the only one with pain and that I am tired of being his servant when all he does is watch TV and sleep all day. You gotta understand, that usually this isn't an issue, but the pain has truly worn me down.

Chris asked me what I had done so far this morning. I told him and he replied that it isn't necessary to push myself like I am doing. Push myself? Doing minimum household chores?

I told him I was just trying to live a normal life and he replied, "But you aren't normal! You have got to realise that and accept it!" But in fact, what I do is pared down to the bone housekeeping compared to what it was even 10 years ago. How much less can I do and still manage to live a relatively clean and organised life? Single handedly.

Over the 23 years of having fibromyalgia I have had a determination like stone. I would not let fibromyalgia or indeed any of my other painful conditions control my life. And for the most part it hasn't. Until today. It's chipping away at the stone.

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!

He works in mysterious ways

So last Thursday I ordered my online Easter grocery shop. The driver had just taken off after delivering our order and immediately on starting to put it away, I noticed a bag that I hadn't ordered.

In it were four packets of frozen Hoki fish fillets and 2 packets of sweet potato fries and 2 packets of sea salt and rosemary chips.

I quickly rang the supermarket online customer service. There was a wait of an hour to talk to a human, so I "talked" to the AI bot there called Olive.

Olive was of no use to me. She told me to keep the goods as it was the supermarket's fault and accept them with their compliments.

The bot also told me there were no deliveries the next day as it was Good Friday, so obviously there was no way to get the bag of frozen foods to the correct purchaser.

I felt quite sad for the lady as I imagine this was what she had planned to feed her family Good Friday. I had done all I could but I couldn't help but feel sorry for her. I had been in a similar situation last Christmas and it's not nice.

I hope the lady was able to rustle up something else for Good Friday. Seeing as I have the fish and chips here I plan to use them Wednesday when family come up for lunch.

With my fibromyalgia flaring and a recurrence of polymyalgia rheumatica, I don't want to be cooking as I am out of spoons and in pain.

During this particular time, we had no spare money for extras which included Easter eggs for the grandchildren. They get plenty of chocolate, so they won't go without, but it was a bit difficult to not be able to give them any this year.

That extra food will come in handy as I haven't done another weekly shop and can't until next week. I guess the LORD has provided for our needs and for that I am grateful. He does work in mysterious ways sometimes! 

 

Normally abnormal

We chronically ill women try so hard to do "normal" things. Like look well. Be cheerful. Be patient. Kind. Hospitable. Our family and marriage are our first priority after God. We try so hard to spin our wheel not fast- but at a "normal" pace. 

By "normal", we compare ourselves to those who do not suffer from chronic illness and pain. Or are disabled. We are very careful to keep serving our family but sometimes with the illness that afflicts us: we fail. This often gets to us and causes us to sink into depression. 

Being unable to process that we simply can't act as "normals", we often berate ourselves and sink into the Pit of Despair. We are often judged by "normal" standards, as we simply cannot attend certain social functions like before. If we do, the pain and effort can make us tense and we can make us appear moody unsociable grumps aka the death head at the feast. 

If only "normals" would realise that we are pushing ourselves every day to live a life that not even closely is "normal" like in the days before our health failed. We get so adept at doing this, that we have become quite good at wearing masks to cover the Mask Of Pain. Hence the appearance of being in a mood. 

My fibromyalgia and other health issues have now made it impossible for me to disguise, and I have learned to acknowledge this to people and tell them in advance that my attendance or action or whatever is totally subject to how I am on any given day. 

Basically, I have had to pander to angina, spinal and knee problems, fibromyalgia, polymyalgia rheumatica, and submit to tyrannical spoons by being totally flexible about my appointments and so on. 

People may still misjudge me but that is not my problem. I just pray that the LORD will allow them to see that I am not lazy or unsociable, but am just a chronically ill woman who finds just breathing some days enough effort. 

The LORD knows I am not well, but people take a lot more convincing. I am normally abnormal.   

Put on therefore, as the elect of God, holy and beloved, bowels of mercies, kindness, humbleness of mind, meekness, longsuffering; Colossians 3:12

Coping with change and disappointment

As you know, we live in a fifth wheeler RV  We have been on the road for three months. Having sold or given away most of our stuff, we have very little left. But it didn't matter as this RV had most things we needed. It was a dream come true.

The dream is coming to an end. My body can't cope with RV life. All my ailments are exacerbated by living in the fifth wheel. I have torn my meniscus in my left knee and I can no longer manage to get up the seven steps and the three up into our bedroom and ensuite. I am almost housebound.

Because the bed is difficult to get in and out of, I need to pull myself up and my shoulder and neck muscles vie in hot contest of being the sorest. As a result, my polymyalgia rheumatica is back and bad.

I have to slide down the wall to help take pressure off my sore knee and this has played havoc with my spinal problems and after getting up the main steps, I suffer angina really badly.

My fatigue is so bad and my fibromyalgia is in a flare. The stress of finding a new house and forcing myself to use the steps in order to do that is causing me to go into a depression.

There's no way round it: no mobility aids to overcome the problem and we will have to sell the fiver. It is a very disappointing turn of events.

I had prayed that I would be making the right choice in buying the fiver and GMC tow vehicle and in how I used my inheritance my mother left me last year. I felt sure this was the way to go but three months into our venture, it is apparent that for me, it is not a lifestyle I can maintain.

In a Christian's life, there is nothing that God hasn't already seen, and in saying that, I must confess that I believe everything is for a purpose. Whatever is in the future is part of God's plan for my life.

In feeling the disappointment, I must remind myself of this. I look forward to looking over this chapter in my life's book and seeing God's purpose for this. God is good. All the time.

© Glenys Robyn Hicks

He has made everything beautiful in its time. Also He has put eternity in their hearts, except that no one can find out the work that God does from. Ecclesiastes 3:11

Like a beetle on its' back

So I have managed to get up onto the X-ray table with great difficulty. It was so narrow that my sides were almost going over the edges. I was assured that I would only need a few pix of my spine and to be honest, I was glad about that. 

Anyone who has had an X-ray when their back was screaming for mercy would know that they aren't the most comfortable of beds, so I settled uncomfortably, glad that it promised not be a long drawn out affair like an MRI.

My previous X-rays on my hands were no problem at all. But this back and neck pain being investigated by X-ray was proving to be a challenge. I lay there praying that the first set of pictures would be sufficient so that I could escape back to the safety of my home. 

They had wedged some foam under my side and it was making my back muscles go into spasm and cramp. There was no give in the sterile table on which I lay and my fibromyalgia was making everything feel like torture.

The first sets of films were fine but the technician decided to take a few more pix higher up towards my neck. By the time I was allowed to get off the table, I was as stiff as a board. 

I tried to raise myself up, but the pain in my muscles and neck made me flap and flail around helplessly. Like a drowning man, I jerked around trying to sit up whilst the technician retreated behind the screen. 

Things were getting desperate as I saw that the table hadn't been lowered and the drop was great enough to make me fearful. So, with a final grunt as I pushed forward and slumped back, I called out in desperation for the technician to come and help me.

Finally upright, my head momentarily swam and I gripped the edge of the bed. Seeing my dizziness, the technician pushed my shoes towards me. I tried to lower myself off the bed again, and my knee with the torn meniscus gave way.

Down I came and fortunately the technician was able to break my fall: and not for the first time, I wondered why they don't help their patients a bit more. Arthritis, shot knees, Sheurrmann's Disease, ankylosing spondylitis, Polymyalgia rheumatica, fibromyalgia with obesity thrown in for good measure makes a good case for help getting on and off the table. 

I just think that some people don't realise the limitations of chronic illness and disability. Sometimes I need their help. It's either that, or try and pick me up after I've fallen to the floor, landing like a beetle on its' back. 

© Glenys Robyn Hicks

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

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

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