2018 and where I’m at with RA, PTSD and EoE amongst other things

5
215

Last year was the worst year of my life. 2017 really blew.  There’s no way to sugar-coat it. I had a cancer diagnosis, major surgery which led to major trauma, a stroke, kidney failure, liver disease, adrenal crisis and I became allergic to seemingly everything.  Oh and I have RA.

The trauma left me with Post Traumatic Stress Disorder (PTSD), and I am still dealing with a great deal of anxiety and depression.

My closest friends deserted me, so I had to end that friendship. I posted on facebook about it, and they sent me a barrage of nasty text messages. I’ll probably get more for posting this.

I should have ignored those messages, but I couldn’t.  It got so bad, I was so distressed by it that a friend took my phone from me, so I couldn’t see the texts or be hurt by them anymore.

I have been secluding myself, as protection.

I have been experiencing severe depression and suicidal thoughts.  I am physically very ill.   I see my GP regularly and I see Dr Mike regularly.

Some people have messaged me privately to tell me to just ‘get over it’ or ‘move on’.  Wow. Well, I would if I could.

Conversely, some people I know less well have been incredibly kind sending messages of support.  Helping me get out of the house.  Giving me support and encouragement.

I wish I could just snap out of it.  The anxiety is crippling.

This post is a basic round up of where things are at. Later, in 3 months, 6 months, 12 months, I can refer back and see how far I’ve come, or otherwise.

So here goes.

Rheumatoid Arthritis is worse, Actemra is no longer working as well as it was.  I did hit a major milestone at my last rheumatologist appointment however, for the first time ever, she made me a 6 monthly follow-up. In over ten years since diagnosis, I have never gone more than 4 months without seeing my rheumy.  My disease has never been controlled enough to go a whole six months without an appointment, I’ve always had a six-week, three month or four month, follow up.  So being considered stable enough to go six months between appointments feels like a huge win.

Having said that, ‘improvement’ is relative.  I have gone from living in permaflare, being bedridden and requiring a wheelchair, to having 4 functional (albeit slow moving, and with rest breaks) hours, 5 days a week.  On average.

For me, having four hours a day, five days a week is a massive improvement. For other people, that would be unacceptable, and they would demand a change in treatment/medication.

Remission is completely unrealistic for me.  Being pain-free is completely unrealistic for me.  Having low pain every day is completely unrealistic for me.

Currently, I have two functional hours a day, four days a week, on average.  That isn’t great, and I’m not happy.  But it IS the best I’ve had.  Those ‘functional’ hours are pain filled, but I can drive a car most days, which is an important yardstick for me.

I am still taking 12mg of prednisone daily, and an average of 60mg of oxycodone daily to manage pain.  So by those metrics, I am doing very badly. I am still at the very severe end of the spectrum.  My rheumatologist wants me to taper down to 7.5mg, but that is unrealistic. I’ve done that so many times before, I refuse.

I understand what this means for my life expectancy.  But the prednisone is holding so many things at bay, I can’t survive without it.  It’s a no win situation, and few people understand this.

I have Adrenal Insufficiency, confirmed by lab testing, and when I get too low, I go into Adrenal Crisis.  It’s happened before and it’s a huge stress on my body. I won’t do it again.  I will try to get to 10mg, but that’s it.

The interesting thing is that I have generally less pain on Actemra, but more swelling, with a net effect of less pain, but more functional disability.

Pain is the most life destroying symptom, however. I would prefer less pain, even if it comes at the expense of hand function.

Given that the weekly injections aren’t working as well as they used to, Actemra infusions might be an option, as the infusions offer a higher overall dose per month.  Infusions are very inconvenient though. It’s a 40 minute drive there, and I’m not capable of that most days.  There is no one who could take me.  So I am just hoping that given the stress of the December/January, Christmas/New Year period, maybe I’ll stabilise and improve again.

Stomach pain is still a major problem. I spent the night of New Year’s in the ER.  Usually the pain is only intense for around 15 minutes. It’s a horrible 15 minutes, but then it does subside to a more dull, but still strong, pain that I can manage with oxycodone.

On the 1st of January, the intense, stabbing pain went on for almost 2 hours before I called an ambulance. I wanted morphine, I couldn’t cope anymore.

The ambos were great, they gave me morphine, but explained that if they gave it to me the would have to take me to hospital.  So I was checked out by a very caring doctor, totally new experience for me. He said he doubted they would ever find out the cause, but suggested it was related to my systemic eosinophilia.  He told me to come back to the ER any time the pain was that bad, which was a nice change.  To be believed, to be cared for, to be given pain relief and not being accused of drug seeking or faking.

I’m still not eating much, but I’m working on it.  Every time I eat, I get horrible pain.  Smaller quantities are better, so I eat a few tablespoons at a time.  I don’t enjoy food anymore, its merely nutrition.

I had my scope and it again showed Eosinophilic Eosophagitis.  I am still on 12mg of prednisone, and that should be totally curative.  But its not.  My gastroenterologist and immunologist both say this is impossible, but the biopsies don’t lie.  My immunologist wants me to do the top 8 elimination diet again, and have a scope after every food introduction.  Not food group, food.

My gastroenterologist refuses to do this.  She says clearly my EoE is not diet mediated, and we will need to keep dilating my oesophagus as necessary. Given that I need this done every six months, and that this is also unheard of in her practice, I asked her how many dilations I can have.  She said she doesn’t know.  She’s never seen a case like mine and she’s been researching the literature.  She really wasn’t any help at all. She prescribed swallowable steroids, on top of the prednisone. But its really just an ‘in desperation’ act.

I am still living on roasted sweet potato and fruit and vegetable purees.  I’ve added some yogurt (for the probiotics). I also take a probiotic capsule daily.

Swallowing in the morning is impossible. Getting my morning meds down is like swallowing razor blades.  Solid food does get stuck in my throat.  My doctors have nothing more for me, and I just need to accept that I can’t eat solid food.  I have been living this way for years, but I always had hope that we would find the trigger foods, and if I eliminated those, I would be able to eat again. Now there isn’t really any hope, according to my gastroenterologist.  My immunologist is still pushing the elimination diet.  It’s hard when the two specialist doctors who are managing your condition disagree.  Both are pretty much at the end of their rope with me though, and haven’t much to offer.

I have had several anaphylactic and near anaphylactic attacks.  I need to carry an Epipen with me at all times, along with antihistamines and an asthma inhaler.  I often get wheezes and break out in hives for no discernible reason.  I’ve had to go to hospital to get oxygen because I couldn’t breathe.  My lungs are badly affected, but no one’s quite sure which disease is attacking them.  For now, it’s asthma, and although exercise can induce an asthma attack, I need to exercise to improve my lung function and cardiovascular fitness.

Anything that raises my body temperature causes hives – exercise, a hot shower, going outside on a warm day.  The hives are harmless, my immunologist says it isn’t so much an allergic reaction as an autoimmune one.  She has diagnosed exercise induced asthma, cholinergic urticaria, and chronic idiopathic urticaria and angioedema.

She suspects mastocytosis, and is recommending a bone marrow biopsy to confirm.

Most days I wake up with a swollen face (angioedema).  If I do go out, its enough for people to stare.  It’s not painful but its uncomfortable.  I don’t go out much, anyway.

The first line of treatment is antihistamines.  The normal dose is 180mg per day of telfast (fexofenadine).  My immunologist has prescribed two 180mg capsules in the morning and two at night.  That’s 4 times the recommended daily dose.  My reactions are certainly a lot milder, but still occur.

These medications are over the counter, and expensive. I’m taking 4 per day and there’s 30 in a box, for $19.95. So that’s almost $20 a week, just to try and keep my hives under control.  Not a great solution.

Added to the vitamin D, the probiotics I’m spending about $45 a week on over-the-counter medications and supplements.

I hate that whenever I leave the house I need to carry so much paraphernalia – Epipen, antihistamines, Ventolin inhaler.  Every morning, my medication routine is ridiculous.  Antihistamines, steroids, inhaled steroids, swallowable steroids, probiotics, vitamin D, metformin, proton pump inhibitor…on and on.  I need a new medic alert bracelet for all the allergies/anaphylactic reactions.

I need to exercise, but I’m not allowed to exercise alone because I could have a life-threatening asthma attack, therefore a gym membership is essential.  I am extremely unfit and not able to do more than a light 15 minute workout right now.  My goal is to improve on that.

I have gained about 10kgs in weight over the last 6 weeks. This is, of course, totally impossible given the 500 calories a day I’m consuming.  I can’t worry about it, but it makes me uncomfortable, to say the least.  None of my clothes fit, and I can’t afford to buy more.

I wouldn’t mind so much if I wasn’t living on a diet of vegetable purees.  If I were living the high life, or comfort eating, I could understand.  My weight gain is just another impossible symptom which adds to doctors not believing me.  Because, how could I possibly be this overweight, and weigh 90kgs?  Doctors can’t comprehend it, therefore I’m lying. Or maybe sleep-eating (yes, really. It has been suggested that I get up in the night while ‘asleep’ and raid the fridge.  Except if I did that the food would get stuck in my throat and I’d choke.  And even if that didn’t happen, the food would be gone, so I’d know *someone* was eating in the night.  Nice theory, though.)

I can’t let the weight get to me.  It may be a side effect of Actemra, or menopause.  Either way, there is nothing I can do about it, and I can’t waste energy on things I can’t change.

My left side is the same.  Numb, pins and needles, pain.  It’s milder though, I would say I’m 90% recovered.  That’s good. But it does still annoy me. It never should have happened.  I have to stop thinking that way, but it’s hard. It is what it is.

I have PTSD. It is severe and it affects every aspect of my life. It’s a disease. Severe anxiety and depression go along with it.  I can’t just get over it. I am trying. I’d love to ‘get over it’. I took medication which helped to begin with, but then made me worse.  Now I am medication free, and I see Dr Mike regularly.

Recovering is much slower than other people would like.  I’m doing the best I can. It’s a process, and its not easy.  I have always been able to pull myself out of depression, and manage anxiety before. This is different. I can’t pull myself out of this.

My hearing is getting worse. I have two hearing aids, but I still find it hard to hear.  I have been trying to get out once a week to have a coffee with someone, to get out of the house.  To face the world.  When I am in public, with background noise I find it very hard to hear, and converse.  Hearing loss is invisible, but it has a huge impact on my quality of life. I have constant tinnitus, and sometimes it pushes me over the edge.  The constant ringing can drive me crazy.

My eyesight continues to deteriorate. The glasses don’t help, they’re just a great big expense. I passed the eye test to drive, however. That’s all that matters, that I can drive.

My eyes are very dry, and I carry eye drops everywhere.  I used them hourly.

My hair keeps falling out.  It grows back and breaks off at about 1inch long. I can’t grow it longer again, and it bothers me. But, like the weight gain, I can’t worry about it.  I can’t change it.

I can’t understand how people can tell me I don’t look sick. I look like a different person these days.  As always, people see what they want to see, believe what they want to believe.

Someone continues to try and hack my social media accounts.  They have been successful at least once.  It’s an uncomfortable experience. I’ve done all I can and I called the police and the e-safety commission.  I changed all my passwords, doubled up on authentication, and I got a new phone number.  I continue to get threatening emails and lots of spam, including a lot of porn! I assume its some zit faced teenage boy on the other side of the world, because the attempts to log in always occur around 2am my time.  Whoever they are, they have managed to dig up a lot of old accounts, and connect them to me.  I don’t know how they are doing it, but they continue to be a pest.

At first I felt scared and vulnerable.  Now I have to ignore it.  I watch my credit card statements and I’m vigilant with changing passwords regularly.

The Chicklet is having a colonoscopy next week.  She has constant abdominal pain and diarreah.  She is not managing it well.  She has been feeling suicidal and made a half-hearted attempt.  I have been spending all my time with her, not leaving her alone, watching her, keeping her company, talking about her fears.

There is nothing worse than your child being sick.

She needs a lot of support.  To be blunt, she is doing all the wrong things. She googles and finds hideous diseases to get more anxious about. She catastrophises (“If I have Crohns disease I will kill myself”).  She talks about her symptoms constantly, she is ‘living the disease’ as it were.

It’s hard to be 15 years old and be going through this, I understand that. But her attitude is making it worse.  I am trying to help her redirect her thoughts, to be realistic, to realise things could be a lot worse without actually SAYING that to her, and to help her have a more positive attitude.

It’s exhausting, but she is getting there. I have a referral to a new psychologist for her, and a dietitian. The prep for the colonscopy will be a very bad day, but once its behind us, things will get better.

I am hoping for a clean scope.  Given my history, Crohns is a possibility. I have mild inflammation throughout my digestive tract.  I’m on all the necessary treatments, immune suppressants, prednisone.  I don’t want that for her.

She is afraid of what they might find.  I keep telling her it is always better to know.  And if the colonoscopy is clean, we’ll know what its not.

Her anxiety is extreme, I hope it will improve once the procedure is over.

 

Gamerboy is in the sweet-spot.  Christmas and New Year are over, and school is still a-ways away. He has meltdowns when he thinks about it, but he is better at putting it out of his mind.  Having said that, the stress is ramping up, the anger/fear is building, and the closer we get to school, the worse this will get.

Everything depends on how that first day goes.  I can only hope it goes well.  By the time school starts he will be 17 and legally able to drop out of school if he chooses.  I have told him its school or get a job.  Cross that bridge when we get to it.  He needs a lot of support and he is completely nocturnal now.  He sleeps all day and games all night.  We’ll start working on turning those hours around next week.

The house is still on the market. Two offers have fallen through. The market is dead, but I will start having opens again this weekend. Its tedious and it infuriates Gamerboy.  I’m hoping for an offer so that we can move on.  We are stuck in limbo as it were, but again, nothing I can do about it.  A buyer will turn up, the house will sell.  I cannot worry about things that are outside of my control

The complaint against the surgeon is still ongoing. I have to finish my response.  I wish I hadn’t made the complaint, it has only caused me more suffering.  I don’t know if I will drop the complaint, if I even can at this point.  I can’t deal with it right now.

In short, I am at bottom.

The only way is up.

So how am I going to get back up?

 

Be positive.

 

Aside from my medical team, and taking my medications, I have to find my positive attitude again.  Being positive doesn’t cure anything, but it makes it easier to cope.

All those clichés are cliché…but they are true and they work.

I cannot control what other people do.  I cannot control how they treat me. I cannot control my feelings.  I can only control my actions.

I cannot make people care about me.  I cannot make them return the care that I gave to them.  I can and should end relationships when it is clear that people do not care, or understand.

I cannot worry about things that I can’t control.

 

 

Exercise.

 

Exercise. I need to get a proper routine in place.  I will be moving house in a few months, and I’ll find a new gym close to home once that happens.  In the meantime I have to go to my old gym.  I have to get back to doing my Centergy classes, and Core classes.  If there are people who make me uncomfortable at gym, then I leave and come back later.

I talked to an old friend last night. He too is getting back into gym after a long absence. He too has PTSD.  We’re going to help eachother stay motivated.  We go to different gyms, but we can give eachother support when motivation is flagging.

Exercise is painful. Some days its very painful.  But if I want to live passed my 50th birthday I need to exercise. It’s really that simple.

Advocacy work.

 

I am working with Creaky Joints Australia as a member of the Patient Council.  I’m very excited about that role, and doing more formal advocacy work.  Meeting the other state representatives of the Patient Council has been a joy, and we have big plans for the year ahead.

There is no better way to lift yourself up than by helping others.

 

Create boundaries.

 

In the past I have counselled a lot of people, and often been unable to draw appropriate boundaries.

Dr Mike has referred me to a course that people in the ‘helping’ professions can take to help them establish and maintain boundaries, and not get burned out.  This has been something that I have had a lot of trouble with in the past.  Taking some personal development courses in this area will help me be a more effective advocate and support person.

 

Work.

 

I’m getting back into graphic design.  I’m working on an Etsy shop to sell my design work. I need to generate an income, and even if I don’t, I need something to learn, to occupy my mind. I need goals, things to achieve. Realistic goals.  I can’t hit my goals in the gym anymore, so I will do them with graphic design.   I have an ipad pro and I’m learning how to use it.   My hand strength is very poor, as is my dexterity. But there are a lot of tools to help me.  My left hand is particularly bad, but my right hand is more important.

I can’t make jewelry anymore, my hands just won’t do it.  I have taught the Chicklet how to make some of my designs.  Maybe that will be ‘therapy’ for her.

 

Those are the things I need to focus on. Positive things.  Those are the things I can control.  Those are the only things I can control.

5 COMMENTS

  1. Sending you lots of positive thoughts for a good year ahead. I hope you get some answers for the Chicklet and that things improve soon. Long may Gamerboy’s sweet spot continue. Take care xo

  2. Mate, before i got a para into your post i got a really inappropriate ‘meet single women” ad from google on ur site. Not sure why, or from what end its coming from, but yeh, not good considering the nature of ur post. xxx

    • Thanks J. I have no idea how or why that happened, but I can guess. Thanks much for letting me know, I’ll run a scan on the site and clean up the files. Thanks xxx

LEAVE A REPLY

Please enter your comment!
Please enter your name here