Recovery

I was going to write a post in March about how it's my least favourite month and how it was surprisingly good and give a big, earthly squeeze to my little lost girls, but somehow the month disappeared. And April too.

The 15th of April marked my brother's birthday and my 4 year (!!!!) anniversary of being on the steroid Prednisone. I owe it a lot and struggle with it a lot. I'm heavier, hairier, balder, smarter, wiser and happier than I was 4 years ago. But it still stung a lot because to me, there was this life BI, before illness, and the life I lead now, AI, after illness.

I guess I'm thankful that I'm not ravaged by the active disease the was I was then. Small graces and all that. But I still have swollen, sore joints and I still get the fevers, the ulcers and the flares of worse arthritis.

I had considered going back on Methotrexate, something I wanted to discuss with my Rheum, but never got to it with the registrar. My amazing GP said he'd go out on the line and prescribe it for me, but he just didn't think it'd be worth it. The risk to him, of course, is large, and the risk to me, as well, is large. And we agreed they were risks not worth taking.


So, I balance my life with a lot of NSAID usage, which is in addition to the other analgesics and the steroid. It's a lot to put in and frankly, I don't do enough to support my body. I should be eating a raw juice diet to help flush those chemicals out but I don't. Can't be bothered cleaning the darn thing and with petrol prices the way they are, food is expensive.

Much more than it was 4 years ago when I went on a raw juice diet for months at a time. I was also on the anti-malarial drug Plaquenil, which meant I couldn't keep solid food down. The plaquinel made me feel so exhausted.

I actually started wondering if I were taking a bad combo of drugs because I've been to that Plaquinel exhausted feeling a few times over the past few weeks.


I recently had a messageboard discussion regarding dreaming, in which I asked if we could temporarily stop dreaming. I've been having weeks of poor sleep because of these very vivid, often lucid, dreams about bad things happening to people I know. I would wake up in cold, hostile terror and then feel powerless and horrid for hours afterwards.

The decision was made that one cannot stop themselves dreaming, but perhaps one could control turning the 'bad' dreams off.

Someone suggested that I wasn't dealing with something in my life and that guilt/ownership was causing the 'bad' part of the dreams. I was then told to begin seeking POSITIVE thoughts and I'd see a change in my life.

I said that while I am actually a fairly optimistic person, compared to say 4 years ago!, I deal with a lot physically and I think the only 'guilt' I could come up with is worrying I'm not doing *enough*. But, I said, I think ALL women face the Enough Dilemma. Am I doing enough for him, for her, for them, and myself?

I mentioned that it's arthritis that I have and boy, did that open a can of worms.

I don't have a disease, they said. No, no. It's dis-ease about my life. And, by the way, had I heard about THE SECRET?

That's where I stopped the conversation and remarked that I don't believe in THE SECRET because I've had a lot of crappy things happen in my life that I didn't ask to, so I'm not one to believe that by thinking about something it's going to happen.

Did I have so many miscarriages before Sophie because I took NSAIDs for pelvic pain and poisoned myself, because I have some sort of huge autoimmune thing, or because I wasn't projecting an image of myself loving motherhood?

I used to think any and all of that, in a sort of roundabout way. I thought that BECAUSE so much bad had happened to me in such a short time, that LIFE was about to bring me ALL this bounty. I was going to rewarded for my patience.

Only, it didn't happen.

A lot. Of Waiting. Went By. A LOT.

I started to get cross. And impatient and angry. Lots of angry.

And I became a really ugly person. I was mean and desperate and completely 100% out of control within myself.

I used to dream, day-dream, and write down all these wonderful things that were going to happen. X would decide this and we'd go Y. And they were ALL SO HAPPY. I drew picture and I wrote poems about these bountiful rewards that were coming.

And they didn't come.

My babies still died. My cat almost died. My husband left. And Sophie's still sick.

So...

What the hell?

And that's when I started to throw away all those lists and dreams and pictures. I used to wish for things whenever the clock would read 12:34 or 1:11 or 11:11. ALWAYS. I'd always wish for something in my lists.

And then I started seeing those times and being THANKFUL for what I have. I have a pretty amazing life, actually. I have awesome friends, who I don't get to see all that often, and I owe them more time. I have an amazing child who is the most creative, brilliant, spirited and sensitive creature I've ever met. And, most of all, I have a wonderful partner.

The same one. A ton of people, all in a matter of 72 hours or so, started asking me about Matt. And I don't actually know what to say. Things are good. We are enjoying each other. We're enjoying being a family. He was so brave to leave and put me on a path to health. I am so thankful for him.

I no longer hate my cold house. I see it as a wonderful home to our tribe. It's cold, yes, but it's weathered gales and sleet, hail and me. We have a huge reserve next door for the boys and it's cluttered. Cluttered but loved.

6 weeks ago I stopped biting my nails. A small blip in the meaning of life, but, for me, it's been huge. I beat that anxiety. I found some calm, some peace, in the fluster of life. I also attempted to give myself a fancy French Manicure but wow, it looks awful. I wear my awful with pride.

I applied for a scholarship to have a 2 year degree in Birth Education and Teaching paid for. I worked on it, got 2 fab references and faxed it in. Well, Matt faxed it in, for I am aloof with technology.

And I didn't get it. And I felt sad, but it didn't absolutely derail my life. I embraced that feeling of sadness, told myself I'm going to have to write a really stellar application to the university (and the loan people!!) and try again. I'm actually sort of happy I didn't get it, because you had to promise 2 years full-time study and I couldn't do that.

It was something I really wanted, though. But it didn't destroy me the way it would have last year, or any other year in my life. But, would it have come to me if I had drawn pictures and written stories and poems about it happening? Or is weighing down life with so much expectation just a barrier to real happiness?

I feel more at peace within myself and with G-d. My dear friends know I began to feel like G-d was punishing me, subjecting me to the 3 D&Cs and the autoimmune disease. I felt hated and unlovable. Marked. A Sinner beyond repair.

When they told me it was a genetic defect, a genetic disease, I began to feel maybe there was something really wrong with me. It was even in my genes. I truly was marked. A burden. And with uncontrolled pain, that darkness and pain just ate into me.

And I don't feel that now. I pray. All the day. Moment by moment sometimes, in especially trying 5.5 year old situations. But my prayers aren't so needy now. They're more: Dear Lord, thanks for the sunshine today. It means she can go run around. VS the Dear Lord, please make it stop raining because I can't take 15 more minutes.

I know some people don't rely on faith the way that I do. I actually denounced G-d to myself following the twin loss. Because, if there was a G-d, why was this happening? But, as they do in 12-step programemes, I had to make room for faith and let it back in. And, over 4 years, it's worked its way back in.

I had to admit to myself, and to the world, that I am a co-dependent. I had only ever heard the word used in association with wives who bought their alcoholic husbands alcohol. I didn't know much about it. But I came across a study about children from bad backgrounds and found that co-dependence is a side-effect of abuse.

Children who grow up with/in/perpetrating violence are/will/maybe/grow up to become co-dependents. And that fantasy is one hallmark of the condition. All those stories and pictures and poems. I was living my life in fantasy to avoid what was really happening, hoping for this mystical Bounty I was to receive that was going to fix everything.

Trust me, it was a bit of a mindfuck.

And I fell apart at the feet of my counselor. And session by session we tackled the ugly crap that triggered the anger. Piece by ugly piece.

There are still more pieces. I always think of a new one and think, oh damn. Why am I not seeing Beverly anymore!? (She's too booked!)

Pia Mellody is THE groundbreaking thinker in the area of Co-Dependence. I have watched all I can find of her and her lectures are hard. They can feel cruel, but they are honest and to the point. (http://www.youtube.com/watch?v=nrLaaar02e4)

Pia realized that hundreds of people had passed through her office at The Meadows with stories very similar to her own. For one thing, a large majority had been abandoned, abused and neglected as children. Pia had long suspected that her own symptoms stemmed from her traumatic childhood and severely dysfunctional family system.

As Pia interviewed person after person, a unique and clear pattern emerged. All had five similar symptoms:

They had little to no self-esteem, often manifested in the carried shame of their primary caregivers;
They had severe boundary issues;
They were unsure of their own reality;
They were unable to identify their needs and wants;
They had difficulty with moderation.

These symptoms together marked an extreme level of immaturity and a level of moral and spiritual emptiness or bankruptcy...

Pia also showed how codependents carry their abusive caretakers’ feelings. Our natural feelings can never hurt or overwhelm us; their purpose is to aid our wholeness. “Carried” feelings lead to rage, panic, unboundaried curiosity, dire depression, shame as worthlessness or shamelessness, and joy as irresponsible childishness.

I began reading her books and at one point she asked which OCD habit you actively engage yourself in? I have many, but one that seemed the most easily altered was nail biting. And I told myself that if I could read her book and get through it alive, I could stop biting my nails.

Now I have proof in the dog-eared book and fancy/ugly French manicure.

I had to own up the realisation that I wanted other people to fix my problems because I was too scared to fix them myself. I wanted other people to make me happy because I didn't feel the things I enjoyed were worthwhile and I wanted them to like me so much I'd rather enjoy what they wanted. I was immature and angry and hateful and fat and overwhelmed by being angry and hateful and immature and fat and was just a big, ugly toad. I wanted to rage and hate and hurt and still be loved despite it all. And it was childish to think and do so.

I'd like to think things are much, much better. A better, realistic, no-fantasy, no intensity-ridden better. Baby steps, as offered by Dr. Leo Martin in What About Bob?. Baby Steps.


It's been 14 months of recovery for me. I envision 30 more years of recovery, to be honest. Painful, not perfect, less intense, less fantasy-filled 30 years.

Now I need to write my Mother's Day Post.


Links:
a) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC314061/
b)http://addictionrecoveryreality.com/the-therapeutic-genius-of-pia-mellody.html#ixzz1LdUg1F52

A little more Badger

I'm always hesitant when the phone rings. I don't know if it's a general phone avoidance or phone phobia, but I get this internal cringe when the phone rings. It's not like I've had many horrible phone experiences in my life, but I am, decidedly, anti-phone these days.

It takes a lot of effort to remove oneself from a comfy couch and walk to the phone. You'd think, being in the company of one who loves emerging technology, we'd have a portable phone but pshh. Seriously, who uses those things? We have 1 phone jack and an antiquated non-cordless phone.

When the phone rings, it takes a lot to answer it. It's either someone confirming an appointment or someone changing an appointment or someone trying to change my power company. No one ever rings to offer me a million dollars or a chat. Not that I'd be keen on a chat. I'd have to sit on the stairs and that's really uncomfy.

And I'm exactly the same way with my mobile. It's more likely to run out of batteries than be used, though I am trying to get better at texting people. I just enjoy socialising when it's my own decision.

I spent some time this morning trying to pass on and receive messages with my gastro. He's been quite a find, after the first gastro was a complete waste, so I look forward to hearing from him. He is genuinely interested in the TRAPS disease and wants to know more. He also, genuinely, wants to help.

So when he mentioned that he'd try to see me ASAP when symptoms started forming a pattern, I leapt on that. Are you sure?? I asked, aghast that someone was actually taking me seriously. Really? And in my head I'm thinking, pinch me! Pinch me! I'm dreaming!

Last Friday morning, thursday night I guess, I noticed a pinching feeling in the area surrounding my right kidney. It was enough to wake me several times. Ow, I thought. That's not good. But I went on into 'work' and dutifully ignored it.

Saturday morning it was more than a pinch and more than an occasional Ow. It was more of a sustained owwwww but still only coming in periodic waves.

Today, now a week on, it's more of the 'why do I need a kidney and for the love of G-d would you stop' sensation. I rang my GP's office on Monday looking for an appointment. 'You need to ring a week in advance' the woman tells me curtly (as though I plan these things, as you would a teeth cleaning). He can see you 3:15 next Monday. Oh, I say. That's quite a ways away. Take it or leave it she tells me. Yikes! Drives a hard bargain, these headphone equipped women.

So, here we are. It's Friday. It hurts and I see the doctor on Monday. Options available to me are the 'after hours' or accident/emergency variety of doctor. The emergency room (seems a bit OTT, you know?) or wait.

So I rang the Gastro, thinking of his offer. I get put onto his PA, a wonderful and lovely and patient girl. Oh, she says, are you the TRAPS lady? I hate to call you that, she says.

Oh no, I butt in. I've been called worse. It is me and I've got these symptoms and he said he wanted to know when it was happening. Tell him that it's mild now but it's going to get worse and I thought he ought to know.

I like how you're so calm, she says. Like you know it's going to get worse and yet you're so calm.

Well, I think to myself. I've done the panic and cry thing in the past and all I did was upset everyone around me. Besides, it's not going to kill me...yet.

My counselor and I have agreed that I enjoy the art of grim and depressing humour. Not in the Hannibal Lecter sort of way, though I do enjoy a nice Chianti. I still have a couple bottles in the cellar and need to check their drink by dates. (What? Didn't you spend your 20s cellaring imported Italian wines? No?)

I don't know what it is about me, but I have a tendency to deflect situations into some macabre, satiric humour. I read once that comedians are funny because they're brutally honest about their pain and they're ok with it. I think of myself as an excellent comedian. It is how I deflect pain. It's how I degrade myself and it's how I am brutally honest with my own limitations.

And I adore making people laugh. Laughter is a nice way of someone saying they accept you. I don't think people expect it when they meet me. Sitting in a doctor's office and dealing with these concepts and walking away with him laughing is a highlight for me. I've had doctors comment that they adore working with me because we get to be so real and so informal. I also enjoy when they curse.

I once had a GP, who I was very fond of, bang his head on his desk when he realised he was completely overwhelmed with being able to help me and said: Frankly, I should just discharge you because you're too hard. But I like you too much.

And maybe that's the thing. I like that people like me, and I like to make things easier for them. Because life is hard. I know how hard it can be. So a light moment for them and for me is pure gold.

My counselor says it's a self-soothing mechanism that I've taught myself over time. That by somehow finding a spark of humour, I've accepted the bleak, decided I'm over the bleak, and can move on to positive things.

See, I AM positive. It's just my positivity isn't rainbows, bunnies and fluffy. It's decidedly dark, meaty and more Philly Cheesesteak than brown rice and miso.

So when the lovely PA responds that I'm calm despite what's going on, to me it's a non-issue. And I actually sort of thought, well, what would you prefer? Me sobbing on the phone and clutching the ground in agony? But then I thought, omg, maybe I am going to die and I should head her warning and, yeah, nah. Not going to happen.

It gives me mental clarity, the grim Jennifer. It lets me get the crap out of the way and get onto business. It also lightens the load. I don't want your sadness, I'm not pitying myself so let's get to the real business of making me better.

I'm finding it hard to curb the habit though. In front of my daughter, I don't want to joke about her health. I'll joke about her high energy, her inability to sleep before 10pm, but this disease, nope. Not funny. Not to me. I'm a real badger about it.

We're not going to dismiss it. I'm not going to allow you to lessen this illness. I'm not going to allow you to replace your discomfort with a blase attitude. And maybe it makes me appear boring and serious and a real stick in the mud.

I started seeing my first specialist, a gyn when I was 13 about the intense pelvic pain I was experiencing. My mother, who never experienced more than 'bad cramps', didn't get what was going on. It felt like a weedwhacker was tearing my uterus apart. I would bleed in excess and pass clots. I would vomit from the pain of the cramping. And yet, it was the 'take 2 tylenol and get over it' attitude I hated the most.

I almost feel sad to admit, but I was a geek. I adored school work and writing essays. Having to miss drama or video production was horror for me. I wanted to be at school for those bits (the other bits like math or science or pe I could happily miss) but I wanted to go to play practice. And yet, it was always, oh Jennifer is an attention seeker and keeping me home was regarded as this generous, excessive and euphoric reward I was being granted and not the kind and caring regard to my pain and my health. There was no humanity in my childhood.

Kids her age don't get pelvic pain. It's growing pains. She'll get over it. She likes the attention and even negative attention is attention.

I didn't get over it. Because there was and is nothing to 'get over'. It's a lifelong commitment, being ill. It will last longer than any friendship, and longer than my own lifetime.

So I saw my first gyn. I was given monthly prescriptions for Vicodin. And it did nothing for me. It was suggested I have a laparoscopy at the age of 14, but my mother said no. I think about the relief I found after my lap in 2003, at the age of 22, and think how much better the previous 8 years could have been.

It wasn't long-lasting, the relief, but it was relief nonetheless. I often question why those of us with adhesions don't get yearly laps, besides the cost and the recovery period.

I had a major kidney infection when I was 15. I had just finished driver's ed and literally, overnight, struck down. The symptoms had been ongoing, but due to the drama caused by me wanting to see a doctor, I ignored it. After 2 ERs, it was found that my right kidney had abscessed.

It took several hours of fluids and kind nurses taking my abuse as they forced the pus from the kidney. That event most likely has paved the way for the recurrent kidney inflammation now. I was in kidney failure.

And I don't want that for my child. Yes, I know how hard it is for you to look at your precious child and imagine the effects of illness. And to admit it to yourself, to other people. I know that people will accuse you of attention seeking, or being mad and off your rocker, but it is worth it to have someone else repeat your fears and worries.

When the paed told me that he suspected that there was arthritis in my daughter's knees, my heart stopped momentarily. I knew what was coming for her. A lifetime of hurt and pain and drugs and sadness. Of limitations and always, always pushing through, but my g-d my heart lifted and I thought, yes! Someone else gets it.

The unresolved pain of my own diagnosis still lingers in me. I think that anger is the force behind my momentum. It powers my satiric nature. It is the power that pushes me through pain, through illness. And I don't want that for her.

I want her force to be fuller. To be brighter. To be of love and confidence and the power of her.

I think, for the most part, the calmness comes because of that simply and easily discarded word: Diagnosis. I got mine. It's my golden ticket. It, all at once, makes me and destroys me. I am finally real. No one can brush me off now. And yet, what an absolutely shitty gift.

I want the same for her. I want her to achieve her golden ticket status early so that we can brush it off and move forward.

I also really want this liver/kidney pain to stop. And knowing that it won't, I open myself up a little more. A little more vulnerable. A little more grey and depressing.

A little more badger.

About The Author

Every good blog has a good blog author. Not to say I'm a good blog author, but I will try to write about my journey with all the heart and honesty I can provide. Some days the words come, some days the brain fog, well, fogs.

I'm Jen. I'm not yet 30 and I'm blogging about living with an incurable illness. It's taken a while to get to the stage mentally and emotionally to write the words incurable illness and to decide to take the step of writing my story.

It was only after some nudging that I decided to do so, though I'm not new to blogging. I had an infertility blog in my earlier days. Infertility in your 20s? Why yes, but then we had no idea what was going to emerge.

I was always the sicker child. I missed my own birthday and party one year after getting the chicken pox. Then I got chicken pox again a few weeks later. I was always getting ear infections and had my tonsils out after 6 bouts of tonsillitis in one year. I had Mono and missed a lot of school. I had recurrent kidney and bladder infections. I've had a kidney abscess from infection.

I developed acid reflux (GERD) when I was a teen. I was always tired and suffered from depression and anxiety. Insomnia was common.

I began to get deep chest pains that at first was suspected asthma but I never had asthma symptoms and didn't really respond to the inhalers.

My legs began to ache at night and my knee would swell up madly.

Soon I had trouble walking the distance from the house to the university, 2 blocks away. The fatigue and inability to sleep were maddening. I had suspected appendicitis at least 3 times in one year. I began dropping dishes because my hands would simply 'let go' from the clasp motion. I started questioning my sanity because I was sensing so much change in my life and comparing myself to my peers. What was wrong with me?

Then I began having miscarriages. For a young girl in her 20s who was otherwise healthy, it was a bit bizarre.

My clotting panels all came back normally so...it was bad luck?

I was diagnosed with PCOS because of a high testerone level and I was found to have scar tissue in and on my uterus, similar to that of pelvic inflammatory disease.

It was after one miscarriage in August 2004 that things started getting strange. I developed horrible joint pain, my muscles ached, my body was swollen, I had a high fever but no signs of infection. My chest hurt, my lungs hurt, my stomach hurt. I saw a GP who told me she thought I had Lupus 'for sure' and when my ANA came back normal told me I had a 'monster virus' and suggested I get some form of body emotion therapy.

It was after my daughter was born that things got stranger. The very same response happened. Only this time I had an infant with reflux who was failure to thrive, was breastfeeding and had a c-section. I was told I was supposed to be feeling like hell. But it didn't explain the swollen joints or the fever, did it?

I began to experience severe symptoms of depression and anxiety because deep down I knew something MORE was wrong with my baby and my body was just not bouncing back the way other people were.

The joint pain was becoming more severe. A lactation consultant told me to go dairy free and gluten free. I lost a lot of weight and my milk almost dried up and still nothing got better.

I pushed through it all and was feeling mildly better in Feb 2007 when I lost a twin pregnancy.

I had 3 successive D&Cs from March 21 to April 11 and after that developed what we thought was a kidney infection. I was given antibiotics I was clearly marked as allergic to and I had a seizure. I saw a bright white light, felt a huge electric shock all over my body and began to seize.

I went to the hospital where I was told I was hyperventilating because I was tired and it was after that I can't remember much. I woke up to a body that was not mine. I couldn't move. Everything hurt. My head was foggy, my abdomen was stiff and every single movement felt like fire in my joints.

The hospital told me it was a gynae issue. Gynae came and saw me and told me it was a Rheumatology issue. Rheumatology told me I couldn't be seen for 4 days and to lie in the hospital bed and get better.

I checked myself out of the hospital against medical orders and saw my family GP the next day.

He broke the news to me: Jen, he said. You have Lupus. We're ordering tests now but every fibre in my body is saying Lupus.

No, I said. I can't have LUPUS! People with Lupus can die!!

He pointed out I couldn't uncurl my hands. They were frozen, turned in, to my body. I couldn't lift my arms, walk or toilet myself. I hadn't eaten for days and was drinking water from a straw. It felt like shattered glass was being crunched every time I moved, from the little trial movement to a full-on sneeze or sob.

He started me on 40mg of Prednisone and I was wheeled out of the room to the car. I went up north to stay with my MIL and daughter.

After 2 weeks I felt fantastic and so we stopped the Prednisone. Immediately every symptom came back. I have never regained that same vitality or health since. I returned home unable to walk, unable to lift a mug to my lips, and unable to cope with what was happening.

And that began the journey to diagnosis, beginning in April 2007 and ending in July 2010.

In that time I was diagnosed with Lupus, Rheumatoid Arthritis, Still's Disease, Familial Mediterranean Fever and finally Traps, or Tumour Necrosis Factor-alpha Receptor Periodic Syndrome. I have also been tested for Lyme Disease, Hyper IgD, and Porphyria.

In that time I have tried Prednisone, Hydrochloroquinine, Methotrexate, Azathioprine, Colchicine, Paracetemol, Ibuprofen, Voltaren, Codeine, Oxycodone, Morphine, Citalopram and Quetiapine. I've had 2 bowel bleeds, allergic reactions to Azathioprine and antibiotics, a 2nd degree burn from the MTX. I've lost my hair, gained weight, developed major outbreaks of acne, lost and gained muscle tone, found and lost my faith in G-d, and became a victim with serious rage and depression.

In that time I've been told I've made it all up, couldn't possibly have a rare disorder, had Lupus and was being a 'woman' about it all, to harden up, to get on with it, that arthritis doesn't really hurt all the time, that no one knows what to do with me, that I'm going to be a guinea pig and not complain about it and that men don't stay with fat women.

In that time I've had 2 incredible GPS, 3 rheumatologists, including the same one who dumped me and later took me back, 2 rounds of genetic testing, and finally 1 answer.

In that time I have experienced bouts of Pleurisy, Pericarditis, numerous kidney infections and inflammations, gallbladder inflammation and stones, migraines, abdominal pain, anxiety, depression, anger, grief, thoughts of suicide and a divorce.

I'm Jen, and this is my story.