When you have funky genes, it makes sense that everything else about you is funky. Funky gallbladder, funky knees, funky sense of humour. And to that, I can add funky boobs.
Earlier this year, Soph (and Matt) were diagnosed with Asperger's Syndrome. It's hard to say whether you're actually 'diagnosed' with Autism or whether the light has finally shown through and you come to know who you really are.
We switched schools when the first was not adequate for Sophie's needs and it was a really stressful time because we hadn't yet received the AS diagnosis for her. All we knew was that she was struggling with tremendous anxiety and having a difficult time with everything. She was basically shutting down in class: no talking, no eye contact, crying, etc.
It was thrown back to us that we were doing something wrong. We kept saying that it must be the teacher (who was quite a grouchy, yelling teacher) and in the end we all decided to move on.
Interviewing at other schools is hard because you're viewed as either someone who's been trodden on or someone who's going to trod on you to get own our way.
Not pleasant!
I was really struggling to get some sleep, up at night with Sophie screaming in her sleep. Up at night with nightmares. I asked my GP for something, ANYTHING, to help me sleep. I'm already on Seroquel 300mg at night for insomnia. He said, go ahead, take 2 on nights you're feeling quite stressed.
It really does nothing more to help you sleep, I found. It does, however, make you more zombified. Not really worth it. And for those of you looking to see if doubling your dose will help you sleep, it doesn't actually. Try some valerian tablets along with your seroquel dose.
Or get up. Seriously, the zombie nature of the drug is so difficult to tolerate, and if you're taking pain killers, please be careful doubling your dose and taking any sort of codeine or narcotic.
In May I started getting twinges in my left breast. I don't really get tender breasts before a period, so if I do feel something, it gets my attention. It was like a sharp stab and it was dull and came and went.
However, as time went on, the breast was getting bigger, angrier with that stabbing sensation but there was never a red mark or a lump or even anything coming out.
Finally, this past cycle, it was getting to the point of severe pain and a yellow goo coming out by itself. I didn't really freak out because I knew whatever it was, it was going to get handled with care and swiftly.
I saw a GP, not my own because he's a man and I don't feel comfy with a man handling the gear, and she seemed ok. She didn't think it was an increase in estrogen or prolactin. She was more concerned about the lump she expected to find.
I hadn't found anything. Matt hadn't found anything. She assured me she was quite good at finding them. And then, she didn't find anything. Nothing at all.
That's when she started getting worried. She mentioned that the pain radiated upwards and into the underarm and it could be a thyroid thing or nothing but it needed to be seen. So, 2 days later I was in the ultrasound room with the older woman trying to get my boob to lactate whatever this goo was.
She couldn't get anything out. She couldn't find any lumps, calcium or pea sized blocks in the ducts. And, she said shaking her head, the pain isn't in the dense tissue as you'd expect with Fibrocystic Breast problems, it's all in the light tissue.
The radiologist came in and said that given my age, they didn't think a mammogram was wise because of the dose of radiation I'd need to get a good look. All my thoughts on whether to get a thyroid guard were directed to that fact that we NEED them if the dose of radiation is high enough to dissuade a radiographer from a mammogram. It could be the age and density of my breasts, but it did make me worried I hadn't bought a thyroid guard.
When she came in to print off the scans, she told me to go home and do some digging with my prescription medication because she does occasionally see this in HRT patients. The extra estrogen, she said.
So, we came home, happy that there is obviously nothing pathological with the breast but shaking our heads in wonder. There is nothing wrong and yet the breast is leaking goo and it hurts! Hurts!!
I started icing it instead of putting heat to it and that seems to help. I tried cabbage on several occasions but it did nothing. Perhaps hot cabbage leafs might have given more relief. It's not really something I'm willing to try just yet. The idea alone sort of icks me out.
I started the steroid because it makes everything else funky, might as well go there. Nope. Nothing. Steroids aren't really indicated in boob disorders at all, except in the treatment of abscess or acute mastitis to help the swelling.
I went to the Omeprazole and got lots of links to breast leakage and breast growth with other gastro drugs like Domperidone. I was given Dom in 02 post gastroscopy to deal with quite bad vomiting from 'stiff' digestion as the old man said. It brought in full milk. That's when I started getting a bit pissed that the female GP didn't even order a single blood test.
So I looked into Seroquel, the drug I LEAST expected to cause breast problems. In high doses, and we're talking the high dose schizophrenia doses, 1600mg a day, there is quite a common report on breast inflammation, breast leakage and discharge. But I take 300mg and have never been on a higher dose. I couldn't find anything about breast discharge at 300mg. That's when I went to the crazymeds forum and asked. At 300mg, the drug begins to impair estrogen receptors and increases in prolactin have been noticed.
So, if I had been at 600mg for a few weeks, that might have been enough to trigger the breasts to begin to fill, then I jumped off, leaving the breasts in a hormone flux.
It seems the only solution to the problem is either to get a script for a drug that turns off the prolactin centre and take the 2 together for the rest of your life, or you wean.
I didn't want to wean. I spent about 48 hours in a funk of 'what will my life be like' post-Seroquel. Then I had a horrible day with the pain on Sunday and thought, nope, I'm getting off. So I read all Monday on how to wean.
The general practice is 50mg a month while titrating up with another drug.
50mg a month means 6 months of possible breast pain. And a lot of pain killers.
The most closely related drug also causes prolactin issues, and I don't want to do that. Plus, I thought, it will take MONTHS to get in to see a psych doctor. I will ring and make a GP appt and I will just go down 100mg and see how that feels in the boob.
Night 1: Not a lot of sleep but some. Lots of waking up in active tremor. Headache. Nausea. Runny Poo.
Thoughts of OH G-d HOW AM I GOING TO DO THIS!?
Better with hot tea.
The boob is absolutely no better, but I imagine until we get the anti-prolactin drug into my system it's just going to keep hurting.
I don't recall what colostrum was like, but that must be what the goo is, though it much denser and more like thick pus. I can't make it come out, it just comes when ready. It has no odour and it isn't stretchy like mucus. There is no blood.
I'm hoping the breast surgeon has a clue and gets me that drug. Breast pain while weaning is sort of a double edged sword.
Off for more hot liquid to stave off the nausea.
Tuesday, August 30, 2011
Saturday, May 7, 2011
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)
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
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
Saturday, March 12, 2011
Catching Up
I need to find the time in my life to write.
So much has been happening and there are so many emotions surrounding it.
I saw the Rheum registrar, a young Indian man, who seemed very nervous and slightly with the deer-in-headlights appearance. It's the one part of my illness I absolutely hate. I just simply can't relate to people who treat you without that essential human connection. I guess if I came across someone who was really extraordinary and something I've always wanted to see in real life, I'd be excited too, but, as a patient, it sucks.
Basically, I've been denied my requests for funding for Anakinra. And they want to take away my diagnosis. That really unsettled me for a few weeks. I started having nightmares again. I simply am running out of options and it makes me feel I need to find another Rheum. Someone who will take these dead ends and DO something. Be proactive. I can't live my life waiting for someone to have the time for me. I've already done that in my personal life with poor results.
Miss S saw the Paed Rheum who IS proactive and has some pretty big friends at London's Children's Hospital where they will do her genetic testing. However, she has some FIRSTS that have to happen. 1) We have to have blood test proof of an elevated inflammation marker, something we have NEVER been able to document in me, save for the gallbladder thing.
We also have to do some testing on Soph, though, at this stage, we're not sure what it will be. It might just be xrays but it could involve explorative surgery. No mother looks forwards to that decision.
School has been a major source of anxiety for us all, to the point of insomnia. Lots to talk about there. The bottom line is the teacher is unhappy with Sophie having time out 2 or 3 times a day for a rest, for her ongoing fatigue. I don't want this to become a permanent source of anxiety for us. She is showing ongoing fatigue signs, she's not coping with the heat and it should be a simple solution.
Instead, it's become a 'We just pulled our kid out of school because of 1 teacher'.
I attempted a 7 day Colchicine trial, suggested by the Registrar as part of proving my 'need' for funded drugs. I made it 5 days and can't do more. Everything burns. It hurts to move. The nausea and stomach symptoms are horrendous. I felt like crawling into a hole and being left for dead earlier today.
Summer has come and gone. It makes me melancholic to see Autumn arriving. It makes me sad it's March. It makes me sad it will be 4 years in 9 days.
Soph has been home for 2 weeks and that's 2 weeks I haven't been going in for my voluntary role. That leaves me with tremendous guilt, given we've just had mega need there due to the displacement of Canterbury residents following the earthquake in Christchurch.
I feel like I'm holding things together with some sort of dissolving threading. It's going to give at some point.
To get me through, I've been taking about 6 kids vitamins every day. It does seem to be providing wonders of energy and health. I remember it was my tonic when Spph was born and we weren't sleeping.
I've been thinking of adding Water kefir to my list of crazy things to try and get well. Must try to find some in nz to get started.
My head is just killing me but I can't lie down because of the colchicine induced nausea.
So much has been happening and there are so many emotions surrounding it.
I saw the Rheum registrar, a young Indian man, who seemed very nervous and slightly with the deer-in-headlights appearance. It's the one part of my illness I absolutely hate. I just simply can't relate to people who treat you without that essential human connection. I guess if I came across someone who was really extraordinary and something I've always wanted to see in real life, I'd be excited too, but, as a patient, it sucks.
Basically, I've been denied my requests for funding for Anakinra. And they want to take away my diagnosis. That really unsettled me for a few weeks. I started having nightmares again. I simply am running out of options and it makes me feel I need to find another Rheum. Someone who will take these dead ends and DO something. Be proactive. I can't live my life waiting for someone to have the time for me. I've already done that in my personal life with poor results.
Miss S saw the Paed Rheum who IS proactive and has some pretty big friends at London's Children's Hospital where they will do her genetic testing. However, she has some FIRSTS that have to happen. 1) We have to have blood test proof of an elevated inflammation marker, something we have NEVER been able to document in me, save for the gallbladder thing.
We also have to do some testing on Soph, though, at this stage, we're not sure what it will be. It might just be xrays but it could involve explorative surgery. No mother looks forwards to that decision.
School has been a major source of anxiety for us all, to the point of insomnia. Lots to talk about there. The bottom line is the teacher is unhappy with Sophie having time out 2 or 3 times a day for a rest, for her ongoing fatigue. I don't want this to become a permanent source of anxiety for us. She is showing ongoing fatigue signs, she's not coping with the heat and it should be a simple solution.
Instead, it's become a 'We just pulled our kid out of school because of 1 teacher'.
I attempted a 7 day Colchicine trial, suggested by the Registrar as part of proving my 'need' for funded drugs. I made it 5 days and can't do more. Everything burns. It hurts to move. The nausea and stomach symptoms are horrendous. I felt like crawling into a hole and being left for dead earlier today.
Summer has come and gone. It makes me melancholic to see Autumn arriving. It makes me sad it's March. It makes me sad it will be 4 years in 9 days.
Soph has been home for 2 weeks and that's 2 weeks I haven't been going in for my voluntary role. That leaves me with tremendous guilt, given we've just had mega need there due to the displacement of Canterbury residents following the earthquake in Christchurch.
I feel like I'm holding things together with some sort of dissolving threading. It's going to give at some point.
To get me through, I've been taking about 6 kids vitamins every day. It does seem to be providing wonders of energy and health. I remember it was my tonic when Spph was born and we weren't sleeping.
I've been thinking of adding Water kefir to my list of crazy things to try and get well. Must try to find some in nz to get started.
My head is just killing me but I can't lie down because of the colchicine induced nausea.
Friday, February 18, 2011
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.
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.
Thursday, February 17, 2011
The Biology of Blame
One of the biggest struggle in ongoing illness is the constant apologizing that you're forced into. I missed 'work' this morning because I'm feeling so exhausted and generally 'ill' (that runny nose, cloudy head and sore throat feeling most people would call a cold) that permeates every cell of my body. I could sleep for a thousand years, if only I could fall asleep. The body is tired, ill and exhausted while the brain is bouncing around, jutting off corners and keeping me awake.
Illness removes the cycle of normality from your life. And unless you hermit yourself away in a small oceanside cottage, you have to cycle your normality in with the rest of the world. And it's difficult. Because the rest of the world is so caught up in maintaining that cycle themselves they can't make many entrances and exits for your wonky illness cycle of normality.
I spend the majority of my day apologizing.
I'm sorry, I couldn't hear that; I'm losing my hearing. Could you repeat that?
I'm sorry I missed that deadline. I was completely overwhelmed with life and pain killers.
I'm sorry I'm late. I couldn't walk too fast this morning and the hills were a problem.
But there are parts of life that you can't continue to apologize for because it becomes too painful. Denial also prohibits some of the apologizing because it is so painful to admit.
I'm sorry you were late for work this morning because of my arthritis. I'm sorry she was late, that hill is killing me.
I'm sorry I couldn't come in today. My child is more important than your organisation and I need to conserve energy.
I'm sorry we don't have much money, even though you work your butt off for our family. My health insurance is so important and so very, very expensive.
I'm sorry we can't buy that baby. Mama needs the money to pay for pain killers that aren't subisidized.
I'm sorry we can't go play this afternoon. Mama hurts and the pain is so overwhelming I am wanting to run away.
No, it's not you sweetie. Mama's just tired and grumpy today. I'm sorry for hurting your feelings.
I'm sorry I'm not earning an income to pay for all my costs -- it's impossible to find someone to take me on paid staff due to my illness and shortcomings.
It takes a lot out of a patient to even admit these feelings, let alone name them, speak them, address them. But we do. And it's hard and painful and emotionally devestating.
People react very differently to these apologies. Some people brush them off -- oh you don't need to do that! they grump.
But I DO need to make this apology. This is my reality. This is the consequence of my illness. And I WANT to and NEED to make you and I aware of this. This is my cycle of normality trying to engage in your cycle of normality. Let me do this, please!
Other people stop you from even speaking, cutting you off with a wave of the hand or other gesture.
How dare you? I'm a human being and just because you don't understand and respect what I'm saying doesn't mean you get to stop me from speaking. I'm sorry that you're so single minded you don't respect my feelings, or are feeling guilty that you're well and I am not. I'm sorry my illness is making you uncomfortable, but I am also living on this planet and have a right to do so.
And occasionally, you'll get the person who wants to remind you of the blame of illness.
You know, they start. I know this woman who read this book about being positive and how positive thinking brought her money and good health.
Some call it The Secret, some have other names for it. It's this belief that by thinking positive, they will somehow exert control over their lives. And truly, it doesn't bother me. If you think money is coming to you, all the best.
You want to control all the red lights in town, have at it!
But it bothers me when you start exerting blame onto me for my illness.
If you were more positive, you would feel better. Your cells wouldn't be ill. Your DNA would change and you could get better.
Having a genetic disease, that last bit always gets under my skin. My DNA, by default, is different from yours. But my DNA, as proved by genetic testing, has a malfunction that results in illness.
So, by using the positive thinking hypothesis, I could have somehow altered my DNA to become normal by being happy? I somehow altered my DNA to the malfunction state because I chose to? Because I did something wrong?
My daughter, a young child trying to live her life well with illness, is somehow to blame for malfunctioning DNA? Did I curse her with this during pregnancy because I was ill and struggling? I fail to understand the principle.
I get that positive people have an easier time with illness because they can push their way through. But they're still pushing. And they're still getting ill. Some of the most prominent faces of illness are these very people. They ARE positive, happy people who ARE ill.
And some of them die from the illness.
Happy, positive people make for interesting articles. That's why these people are fronting organisations. Because they're nice to reporters. Reporters would have a field day with Oscar the Grouch turning up and berating the reporter.
But it doesn't mean that Oscar the Grouch became ill BECAUSE he is a trash-can living grump. He got ill because he got ill. Illness, like happiness, happens.
For every cancer sufferer who faces ideas of pessimism and a life of hardship, there is a cancer sufferer who spent a life full of optimism and peace. Cancer happens. Regardless of whether you spent your teens and twenties and thirties seeing the glass as half-full or half-empty.
To suggest otherwise is cruel.
Am I sick because I came from a family of dysfunction and didn't have the social skills to enter society as an optimist? Am I sick because I spent a period of time facing depression as a result of sexual abuse? Am I sick because I didn't embrace my illness with positivity and optimism?
No. I'm sick because I'm sick. I was sick from the moment I was conceived and I will be sick until the day I day. It's in my DNA.
Certainly, the way in which one handles illness certainly begets the quality of life one will have while ill. And that's something I have spent the past 12 months learning, getting counseling for and bearing change into our family. It is the message I am teaching my ill daughter.
But I will not stand for someone telling her that she is ill because she has somehow done something to deserve it.
I did nothing to deserve this illness. The illness is cruel enough; living life with this illness is hard enough without some jackass telling me that if ONLY I had... And that my life would become easier if ONLY I would...
To suggest that I can re-alter my DNA and that my illness will go away if I simply retrain my thoughts is informercial fodder.
One such book proclaims: "It shows that genes and DNA do not control our biology; that instead DNA is controlled by signals from outside the cell, including the energetic messages emanating from our positive and negative thoughts...a major breakthrough showing that our bodies can be changed as we retrain our thinking."
I agree to an extent that we do control our destiny with what we do and how we think. When I lived with uncontrolled pain, I hated the world. It was a dark grey blob of existence that no one needed. Death was welcomed.
But once I re-emerged into the world, I saw how amazing and fun and truly wonderful life could be. So yes, to an extent, my positive thinking changed my world. But those positive thoughts only came once my biology was controlled.
I still struggle with the pain. When the pain is so cruel I want to rip joints from my flesh with a kitchen knife, I hate everything. I just want the pain to stop. It's hard, in that moment, to see the beauty in nature, in people, in just breathing.
But days spent with friends and being and feeling happy reminds me that those bleak moments are fewer and fewer.
When an illness is uncontrolled and the patient is living in a hell, being told that they would be better if they just thought positive is cruel. That patient IS thinking positive. They are repeating that the pain is going to go away and it's not going to come back. They are repeating, mantra style, that the pain will be gone in 5 minutes. Those 5 minutes may pass, but they keep bleating on that the pain WILL stop and they WILL be ok.
Fear, desperate fear of the pain not stopping is keeping them pushing forward in their lives; but they are positive in those moments of desperation, willing the pain away. Some depression patients cite this as to how they chose not to attempt suicide. They kept repeating that the feelings would pass. That is optimism.
That IS positive thinking.
No, it's not the 'My body is beautiful and whole' business some people want you to keep practicing, but it IS positive. And in that moment of desperation, of struggling and drowning in pain, it's all you can muster. But it IS positive. And you are NOT doing anything but surviving and how dare anyone accuse you of creating or maintaining your illness by virtue of thought.
There is a place in illness and recovery for positive thinking, for positive euphemisms, for sunshine and rainbows and unicorns and fluffy bunnies. But, as someone who is ill, I am spending my life desperately trying to make my norm fit yours, and as a result, constantly apologizing for my shortfalls.
And for you to suggest that I could, simply and without any drugs, money spent or time spent with my doctor, repel my illness simply by reconstructing my thoughts, is just plain ignorant and heartless.
I don't suggest to you, in polite company or not, that you would fit your trousers better if you didn't drink all that beer, so why can you suggest that I am to blame for my illness simply because I don't spend my time running through fields of daisies in the company of bunnies, unicorns and anime characters?
What is it about uncontrolled and chronic illness that allows people to insert blame into our lives? People long gave up blaming birth defects on the actions of pregnant mothers, so why is it still acceptable to assert blame on survivors of illness?
And how useful is it to do so?
I feel enough blame and sadness for the struggles of my family. I don't need more.
As anyone with ongoing illness, we are probably one of the most blindly optimistic people you will meet. Perhaps not publically, perhaps not triumphantly, but we are. How many of you have tried products off the shelf with hope it will help? How many of you have met with new doctors, often at a high cost to yourself, with hope he will change your life? How many of you have read books, repeated mantras, burnt candles, rubbed oils and prayed and cried to G-d for help?
I'd say 9 out 10 have gambled with herbs, diet alterations, crystals, oils, people, in a blind hope and faith that it would help.
How is that not positive thinking? How is HOPE not seen as the most active and attractive form of positivity? Isn't hope the eternal flame that keeps humans plodding along?
How can you, blind to my life and all I've been through and keep subscribing to and trying, suggest that I am to blame for my illness?
Maybe it's because of facing the fear and the sorrow and the pain in my life that I have the capacity to feel hopeful. Maybe because I AM honest and feel sadness in my life that I CAN see the joy. Maybe trying to cover it all up with a bandaid of fake positivty might do more harm?
If you want to be supportive and helpful; if you want to love me and embrace my life, if you want to introduce positivity and mediation and other forms of your 'positive thinking' then allow me to explain whether there is time, energy and need for that in my life.
You might be surprised with how positive I already am.
You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. ~Eleanor Roosevelt
Illness removes the cycle of normality from your life. And unless you hermit yourself away in a small oceanside cottage, you have to cycle your normality in with the rest of the world. And it's difficult. Because the rest of the world is so caught up in maintaining that cycle themselves they can't make many entrances and exits for your wonky illness cycle of normality.
I spend the majority of my day apologizing.
I'm sorry, I couldn't hear that; I'm losing my hearing. Could you repeat that?
I'm sorry I missed that deadline. I was completely overwhelmed with life and pain killers.
I'm sorry I'm late. I couldn't walk too fast this morning and the hills were a problem.
But there are parts of life that you can't continue to apologize for because it becomes too painful. Denial also prohibits some of the apologizing because it is so painful to admit.
I'm sorry you were late for work this morning because of my arthritis. I'm sorry she was late, that hill is killing me.
I'm sorry I couldn't come in today. My child is more important than your organisation and I need to conserve energy.
I'm sorry we don't have much money, even though you work your butt off for our family. My health insurance is so important and so very, very expensive.
I'm sorry we can't buy that baby. Mama needs the money to pay for pain killers that aren't subisidized.
I'm sorry we can't go play this afternoon. Mama hurts and the pain is so overwhelming I am wanting to run away.
No, it's not you sweetie. Mama's just tired and grumpy today. I'm sorry for hurting your feelings.
I'm sorry I'm not earning an income to pay for all my costs -- it's impossible to find someone to take me on paid staff due to my illness and shortcomings.
It takes a lot out of a patient to even admit these feelings, let alone name them, speak them, address them. But we do. And it's hard and painful and emotionally devestating.
People react very differently to these apologies. Some people brush them off -- oh you don't need to do that! they grump.
But I DO need to make this apology. This is my reality. This is the consequence of my illness. And I WANT to and NEED to make you and I aware of this. This is my cycle of normality trying to engage in your cycle of normality. Let me do this, please!
Other people stop you from even speaking, cutting you off with a wave of the hand or other gesture.
How dare you? I'm a human being and just because you don't understand and respect what I'm saying doesn't mean you get to stop me from speaking. I'm sorry that you're so single minded you don't respect my feelings, or are feeling guilty that you're well and I am not. I'm sorry my illness is making you uncomfortable, but I am also living on this planet and have a right to do so.
And occasionally, you'll get the person who wants to remind you of the blame of illness.
You know, they start. I know this woman who read this book about being positive and how positive thinking brought her money and good health.
Some call it The Secret, some have other names for it. It's this belief that by thinking positive, they will somehow exert control over their lives. And truly, it doesn't bother me. If you think money is coming to you, all the best.
You want to control all the red lights in town, have at it!
But it bothers me when you start exerting blame onto me for my illness.
If you were more positive, you would feel better. Your cells wouldn't be ill. Your DNA would change and you could get better.
Having a genetic disease, that last bit always gets under my skin. My DNA, by default, is different from yours. But my DNA, as proved by genetic testing, has a malfunction that results in illness.
So, by using the positive thinking hypothesis, I could have somehow altered my DNA to become normal by being happy? I somehow altered my DNA to the malfunction state because I chose to? Because I did something wrong?
My daughter, a young child trying to live her life well with illness, is somehow to blame for malfunctioning DNA? Did I curse her with this during pregnancy because I was ill and struggling? I fail to understand the principle.
I get that positive people have an easier time with illness because they can push their way through. But they're still pushing. And they're still getting ill. Some of the most prominent faces of illness are these very people. They ARE positive, happy people who ARE ill.
And some of them die from the illness.
Happy, positive people make for interesting articles. That's why these people are fronting organisations. Because they're nice to reporters. Reporters would have a field day with Oscar the Grouch turning up and berating the reporter.
But it doesn't mean that Oscar the Grouch became ill BECAUSE he is a trash-can living grump. He got ill because he got ill. Illness, like happiness, happens.
For every cancer sufferer who faces ideas of pessimism and a life of hardship, there is a cancer sufferer who spent a life full of optimism and peace. Cancer happens. Regardless of whether you spent your teens and twenties and thirties seeing the glass as half-full or half-empty.
To suggest otherwise is cruel.
Am I sick because I came from a family of dysfunction and didn't have the social skills to enter society as an optimist? Am I sick because I spent a period of time facing depression as a result of sexual abuse? Am I sick because I didn't embrace my illness with positivity and optimism?
No. I'm sick because I'm sick. I was sick from the moment I was conceived and I will be sick until the day I day. It's in my DNA.
Certainly, the way in which one handles illness certainly begets the quality of life one will have while ill. And that's something I have spent the past 12 months learning, getting counseling for and bearing change into our family. It is the message I am teaching my ill daughter.
But I will not stand for someone telling her that she is ill because she has somehow done something to deserve it.
I did nothing to deserve this illness. The illness is cruel enough; living life with this illness is hard enough without some jackass telling me that if ONLY I had... And that my life would become easier if ONLY I would...
To suggest that I can re-alter my DNA and that my illness will go away if I simply retrain my thoughts is informercial fodder.
One such book proclaims: "It shows that genes and DNA do not control our biology; that instead DNA is controlled by signals from outside the cell, including the energetic messages emanating from our positive and negative thoughts...a major breakthrough showing that our bodies can be changed as we retrain our thinking."
I agree to an extent that we do control our destiny with what we do and how we think. When I lived with uncontrolled pain, I hated the world. It was a dark grey blob of existence that no one needed. Death was welcomed.
But once I re-emerged into the world, I saw how amazing and fun and truly wonderful life could be. So yes, to an extent, my positive thinking changed my world. But those positive thoughts only came once my biology was controlled.
I still struggle with the pain. When the pain is so cruel I want to rip joints from my flesh with a kitchen knife, I hate everything. I just want the pain to stop. It's hard, in that moment, to see the beauty in nature, in people, in just breathing.
But days spent with friends and being and feeling happy reminds me that those bleak moments are fewer and fewer.
When an illness is uncontrolled and the patient is living in a hell, being told that they would be better if they just thought positive is cruel. That patient IS thinking positive. They are repeating that the pain is going to go away and it's not going to come back. They are repeating, mantra style, that the pain will be gone in 5 minutes. Those 5 minutes may pass, but they keep bleating on that the pain WILL stop and they WILL be ok.
Fear, desperate fear of the pain not stopping is keeping them pushing forward in their lives; but they are positive in those moments of desperation, willing the pain away. Some depression patients cite this as to how they chose not to attempt suicide. They kept repeating that the feelings would pass. That is optimism.
That IS positive thinking.
No, it's not the 'My body is beautiful and whole' business some people want you to keep practicing, but it IS positive. And in that moment of desperation, of struggling and drowning in pain, it's all you can muster. But it IS positive. And you are NOT doing anything but surviving and how dare anyone accuse you of creating or maintaining your illness by virtue of thought.
There is a place in illness and recovery for positive thinking, for positive euphemisms, for sunshine and rainbows and unicorns and fluffy bunnies. But, as someone who is ill, I am spending my life desperately trying to make my norm fit yours, and as a result, constantly apologizing for my shortfalls.
And for you to suggest that I could, simply and without any drugs, money spent or time spent with my doctor, repel my illness simply by reconstructing my thoughts, is just plain ignorant and heartless.
I don't suggest to you, in polite company or not, that you would fit your trousers better if you didn't drink all that beer, so why can you suggest that I am to blame for my illness simply because I don't spend my time running through fields of daisies in the company of bunnies, unicorns and anime characters?
What is it about uncontrolled and chronic illness that allows people to insert blame into our lives? People long gave up blaming birth defects on the actions of pregnant mothers, so why is it still acceptable to assert blame on survivors of illness?
And how useful is it to do so?
I feel enough blame and sadness for the struggles of my family. I don't need more.
As anyone with ongoing illness, we are probably one of the most blindly optimistic people you will meet. Perhaps not publically, perhaps not triumphantly, but we are. How many of you have tried products off the shelf with hope it will help? How many of you have met with new doctors, often at a high cost to yourself, with hope he will change your life? How many of you have read books, repeated mantras, burnt candles, rubbed oils and prayed and cried to G-d for help?
I'd say 9 out 10 have gambled with herbs, diet alterations, crystals, oils, people, in a blind hope and faith that it would help.
How is that not positive thinking? How is HOPE not seen as the most active and attractive form of positivity? Isn't hope the eternal flame that keeps humans plodding along?
How can you, blind to my life and all I've been through and keep subscribing to and trying, suggest that I am to blame for my illness?
Maybe it's because of facing the fear and the sorrow and the pain in my life that I have the capacity to feel hopeful. Maybe because I AM honest and feel sadness in my life that I CAN see the joy. Maybe trying to cover it all up with a bandaid of fake positivty might do more harm?
If you want to be supportive and helpful; if you want to love me and embrace my life, if you want to introduce positivity and mediation and other forms of your 'positive thinking' then allow me to explain whether there is time, energy and need for that in my life.
You might be surprised with how positive I already am.
You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. ~Eleanor Roosevelt
The Obligatory I'm Sorry Post
Dear Blog and Blog readers,
I'm sorry for my absence and lack of writing. I've got a thousand excuses but denial is probably the real reason for me not addressing my illness and writing. But I'll be back shortly.
I'm sorry for my absence and lack of writing. I've got a thousand excuses but denial is probably the real reason for me not addressing my illness and writing. But I'll be back shortly.
Friday, November 12, 2010
What Hurts The Most?
"What hurts the most yields the greatest strength" reads a t-shirt available at Cafepress.com if you search for Neuropathy.
I think it's a fabulous opened ended statement.
Are they talking physical pain? Emotional pain and regret? Psychological pain? Or a cultural stiffness that eventually endures pain?
For me, what hurts the most is my body.
In July and August 2008 we moved from Blenheim and a warm, modern home to a leaky apartment and eventually to the home we live in now. It's cold and draughty. It has no heat, except a couple oil fin heaters we have bought. The wind rips through. It took months to get rid of the dampness and cold. It was a particularly cruel Wellington winter.
And I had yet to be diagnosed with a rare disease. People still thought I was an attention seeking dramatic depressive.
I just hurt.
One morning I woke up so sore I could hardly breathe. As the day wore on, I began to think, if this is it. If this is all I will ever have to live for, I don't want to live. And it was scary. It was a tormenting thought to have. I had an almost 3 year old -- why wasn't she enough to live for?
Wasn't life itself worth living for? It was a horrible internal battle. My desire to live was strong but the pain itself was so horrid that death seemed like a warm embrace, a deserved win.
I went to my GP after a 2 day internal battle and told him. If this is all I have to live for, I don't want to live. This was when we first looked into Cox-2 Inhibitors. He had some Celebrex hanging around and gave me 7 boxes that had expired by a few months. (Not that they *really* ever expire, he said.) I was so grateful. The drug can be terribly expensive. We raised my steroid and I took some oxynorm and tramadol together. It wasn't what I needed to beat the pain monster but at least I didn't want to die anymore.
He also referred me to the mental health service. I think he realized that it wasn't going to touch the pain and I might become suicidal again. I met with them and my intake was exactly as you'd imagine. I've never been a risk to anyone else, just myself, but only when the pain is so extreme death seems welcome.
They really did seem to get how bad the pain was. They encouraged me to push for a pain clinic assessment. 'Someone must be able to do something for you!' they quipped. (The short answer is no.)
I think it was the steroid more than anything that helped. And it did get better, as it does.
The pain for me cycles in flares. Some days I hardly wonder what the fuss is about and then there are days where simple muscle flexes make me want to howl with pain and the electric shocks are awful.
Today, for example, my fingers hurt. My hands hurt, my arms up to the elbow hurts. My legs under the knee hurts. Moving them is agony. Cutting, writing, brushing my hair or teeth is totally out of the question. Carrying dishes is a disaster because it can all change in a split second. Boom, my hand will open, and crash! The dish that was held so automatically and expertly goes crashing to the ground.
I will never use good dishes as daily dishes for that very reason. I have personally destroyed an entire dinner set. Some of my favourite mugs have been lost to this.
My legs feel as though they are bolted to the ground. Picking them up feels almost like marching and I am directed to memories of elephants marching, trunk holding tail. My mental image is of my heavy elephant leg lifting up, pushing down, lifting up, pushing down. It's almost as though I must tell myself how to walk to get these beasts to work.
Stairs are a laughing matter. There's no way these legs will lift high enough to clear a step and yet, you must. Life doesn't stop because you can't climb the stairs. Especially in a world of 2-story houses built long before anyone recognized arthritis.
I will often be sitting, waiting for pain killers to kick in, when I feel the electric shocks hit my spine or my arms. The burning in my legs is agonizing at times. I used to be ashamed to cry in pain. Most of the time I'm alone when it happens so I don't mind going with it. But when other people are around I try not to.
I try to hide it as much as I can, but there are some days when it just hurts so much I hate life and I hate everything and I just want to stop hurting. My daughter is getting better at understanding it's not her, or anything really, it's just that mummy hurts and mummy needs to let it out. But it used to really upset her.
So I would find myself stuck on the floor, in agony, crying with an equally distressed toddler crying too.
Nothing ever really helps. Heat, cold, pain killers. I find that there will be days of warning -- increasingly sore muscles. Sore joints and fatigue. Headaches. Trouble sleeping and eventually it will hit.
It's often when I have a lot going on and so I will email people: "Fingers hurt. reply later, ok?" whether or not ok is a satisfactory answer for them. Sometimes I can push through and my fingers will ache and swell and once I nearly burnt the house down trying to prepare meals in this state.
I turned the wrong element on and went to sit down, exhausted from chopping and feeling fatigued. We had moved the toaster to the stove so it was easier for me to operate and boom! Up in flames went the toaster. If I had fallen asleep or been unable to move to extinguish the fire, we would have suffered far more damage. Thankfully the only damage was smoke induced and a burnt element and ruined toaster.
People often suggest we get home help during these times. The problem is many folded. For one, you never know when it will occur. You can't afford that sort of help anyways ($26 + an hour) and people expect you just to 'harden up' and get on with it. And I've tried and I do. But most often, it's hard, I hurt and it made me very, very angry on the inside.
When I explained the anger to the psych consult, they suggested I do some anger management courses. Oh, how I laughed. I don't have an anger problem I told them. I most certainly did. I also had a problem with accepting this was my life. I was still clinging stubbornly to the belief that I was going to get better.
It wasn't until this year when the gene tests returned that I realized I am *never* 'going to get better'. You can't change who are at a genetic level. All I can pray for is relief from the pain and the drug Anakinra to work.
I think that helped immensely. As did the anger management classes. I eventually went to them, in March of 2010 instead of Sept 2009. They taught me that I didn't have the social upbringing to deal with the emotions I was feeling.
It helps to write about the pain. Constant pain really does your head in. People often comment: G-d I can't handle it when I get a headache! I can't imagine weeks of this pain!
And that's how it is. The pain will rise and fall in cycles, it will cancel plans, create chaos and hassles. You have to make excuses and find alternatives. People won't understand or if they do, they are so kind and wonderful you wish all people were like them. Someone will bitch at you and someone will bring you a casserole. You're constantly challenged by the pain -- your own reactions, your ability to self-care or self-hate.
Life goes on and doesn't stop. The pain will eventually go away. You're left exhausted and hurt. Once the pain is gone, it takes days to rebuild from the exhaustion and flush out all the shitty drugs you've had to pump yourself full of.
When people recover from an illness with antibiotics you often hear people say -- oh, it takes it out of you. Takes weeks to get over those terrible antibiotics. But you never hear, oh, that awful oxynorm. Takes weeks to get those drugs out of your system! Insert with tramadol, morphine, meloxicam.
I recently overheard a discussion in which two people were discussing a third party using a lot of paracetemol. And how taking lots of pain killers was a blight on society. I had to laugh. Paracetemol?! Mwah ha ha. How I wish I was one of those people who never needed anything and considered it a last resort.
I think I've actually got an incredibly high pain tolerance. It's how I get on with life. I shop. I cook. I mend and sew. I create and paint and play Barbies. I parent very well. I've done charity work.
I hurt but I carry on.
I was told the other day that you'd 'never know' anything was up with me. Sigh, I think on the inside. I wish I went purple. Or had stripes. Or big fins. Even a big fish head. I responded that I walk slower than most people. And take time with things because I have to think very slowly to make sure I'm not making social mistakes.
I was grateful that these people asked about my illness and I got to tell them more. I was grateful for their empathy and for their kind words about how well I carry myself.
I guess that's another way the illness hurts.
If I want to lie down on the floor and sob and openly express my emotions about it all, am I not carrying myself very well? Am I doing a disservice to myself or others with chronic illness by not carrying myself well?
My daughter seems to struggle with it at the moment. She wants me to be a willing participant in her play and I am finding it hard to explain to hurt what it means when I say 'Mummy hurts'. I've tried to explain that I only have certain amounts of energy. She hasn't quite grasped that mental energy is different to physical energy and I have limited amounts of both.
I feel immense dimensions of guilt.
For not bringing in an income. For costing my family money. For having to bail out of social events. People don't get that. They think you're a flake or just finding any old excuse to not go out.
That causes guilt too. If they'd just ask -- are you avoiding me or do you really hurt they'd get so much more knowledge and no one would get hurt feelings.
People are biased by illness. They either find you a bludger or have bad memories of someone else with illness. Maybe illness killed off someone they loved desperately and you remind them of that pain. Not many people choose to let you tell your own story.
That hurts too.
It hurts to hurt.
I remember once a nurse told me to pray for pain relief. "It can't hurt" she said, not knowing the pun. Oh how I wanted to point it out but didn't. I didn't want to appear sacrilegious.
”The greatest evil is physical pain.” – St. Augustine
Oddly enough, nothing has taken away the pain. Not even prayer. As much as I had hoped a good word with the big man upstairs was going to help, I wasn't really surprised.
Today, my arms hurt. My fingers ache. My legs burn. I trip over my heavy elephant feet. I am tired and plagued with exhaustion. But I have promised a trip to the beach and a plate of hot chips. I have to pack to catch a flight tomorrow and it's overwhelming.
This is when I actually use prayer. Lord, I say, please grant me the patience and the endurance to get through today. To hold my tongue and to love my daughter unconditionally.
It's one of those days when I say: Everything hurts.
It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. -- Julius Caesar
I think it's a fabulous opened ended statement.
Are they talking physical pain? Emotional pain and regret? Psychological pain? Or a cultural stiffness that eventually endures pain?
For me, what hurts the most is my body.
In July and August 2008 we moved from Blenheim and a warm, modern home to a leaky apartment and eventually to the home we live in now. It's cold and draughty. It has no heat, except a couple oil fin heaters we have bought. The wind rips through. It took months to get rid of the dampness and cold. It was a particularly cruel Wellington winter.
And I had yet to be diagnosed with a rare disease. People still thought I was an attention seeking dramatic depressive.
I just hurt.
One morning I woke up so sore I could hardly breathe. As the day wore on, I began to think, if this is it. If this is all I will ever have to live for, I don't want to live. And it was scary. It was a tormenting thought to have. I had an almost 3 year old -- why wasn't she enough to live for?
Wasn't life itself worth living for? It was a horrible internal battle. My desire to live was strong but the pain itself was so horrid that death seemed like a warm embrace, a deserved win.
I went to my GP after a 2 day internal battle and told him. If this is all I have to live for, I don't want to live. This was when we first looked into Cox-2 Inhibitors. He had some Celebrex hanging around and gave me 7 boxes that had expired by a few months. (Not that they *really* ever expire, he said.) I was so grateful. The drug can be terribly expensive. We raised my steroid and I took some oxynorm and tramadol together. It wasn't what I needed to beat the pain monster but at least I didn't want to die anymore.
He also referred me to the mental health service. I think he realized that it wasn't going to touch the pain and I might become suicidal again. I met with them and my intake was exactly as you'd imagine. I've never been a risk to anyone else, just myself, but only when the pain is so extreme death seems welcome.
They really did seem to get how bad the pain was. They encouraged me to push for a pain clinic assessment. 'Someone must be able to do something for you!' they quipped. (The short answer is no.)
I think it was the steroid more than anything that helped. And it did get better, as it does.
The pain for me cycles in flares. Some days I hardly wonder what the fuss is about and then there are days where simple muscle flexes make me want to howl with pain and the electric shocks are awful.
Today, for example, my fingers hurt. My hands hurt, my arms up to the elbow hurts. My legs under the knee hurts. Moving them is agony. Cutting, writing, brushing my hair or teeth is totally out of the question. Carrying dishes is a disaster because it can all change in a split second. Boom, my hand will open, and crash! The dish that was held so automatically and expertly goes crashing to the ground.
I will never use good dishes as daily dishes for that very reason. I have personally destroyed an entire dinner set. Some of my favourite mugs have been lost to this.
My legs feel as though they are bolted to the ground. Picking them up feels almost like marching and I am directed to memories of elephants marching, trunk holding tail. My mental image is of my heavy elephant leg lifting up, pushing down, lifting up, pushing down. It's almost as though I must tell myself how to walk to get these beasts to work.
Stairs are a laughing matter. There's no way these legs will lift high enough to clear a step and yet, you must. Life doesn't stop because you can't climb the stairs. Especially in a world of 2-story houses built long before anyone recognized arthritis.
I will often be sitting, waiting for pain killers to kick in, when I feel the electric shocks hit my spine or my arms. The burning in my legs is agonizing at times. I used to be ashamed to cry in pain. Most of the time I'm alone when it happens so I don't mind going with it. But when other people are around I try not to.
I try to hide it as much as I can, but there are some days when it just hurts so much I hate life and I hate everything and I just want to stop hurting. My daughter is getting better at understanding it's not her, or anything really, it's just that mummy hurts and mummy needs to let it out. But it used to really upset her.
So I would find myself stuck on the floor, in agony, crying with an equally distressed toddler crying too.
Nothing ever really helps. Heat, cold, pain killers. I find that there will be days of warning -- increasingly sore muscles. Sore joints and fatigue. Headaches. Trouble sleeping and eventually it will hit.
It's often when I have a lot going on and so I will email people: "Fingers hurt. reply later, ok?" whether or not ok is a satisfactory answer for them. Sometimes I can push through and my fingers will ache and swell and once I nearly burnt the house down trying to prepare meals in this state.
I turned the wrong element on and went to sit down, exhausted from chopping and feeling fatigued. We had moved the toaster to the stove so it was easier for me to operate and boom! Up in flames went the toaster. If I had fallen asleep or been unable to move to extinguish the fire, we would have suffered far more damage. Thankfully the only damage was smoke induced and a burnt element and ruined toaster.
People often suggest we get home help during these times. The problem is many folded. For one, you never know when it will occur. You can't afford that sort of help anyways ($26 + an hour) and people expect you just to 'harden up' and get on with it. And I've tried and I do. But most often, it's hard, I hurt and it made me very, very angry on the inside.
When I explained the anger to the psych consult, they suggested I do some anger management courses. Oh, how I laughed. I don't have an anger problem I told them. I most certainly did. I also had a problem with accepting this was my life. I was still clinging stubbornly to the belief that I was going to get better.
It wasn't until this year when the gene tests returned that I realized I am *never* 'going to get better'. You can't change who are at a genetic level. All I can pray for is relief from the pain and the drug Anakinra to work.
I think that helped immensely. As did the anger management classes. I eventually went to them, in March of 2010 instead of Sept 2009. They taught me that I didn't have the social upbringing to deal with the emotions I was feeling.
It helps to write about the pain. Constant pain really does your head in. People often comment: G-d I can't handle it when I get a headache! I can't imagine weeks of this pain!
And that's how it is. The pain will rise and fall in cycles, it will cancel plans, create chaos and hassles. You have to make excuses and find alternatives. People won't understand or if they do, they are so kind and wonderful you wish all people were like them. Someone will bitch at you and someone will bring you a casserole. You're constantly challenged by the pain -- your own reactions, your ability to self-care or self-hate.
Life goes on and doesn't stop. The pain will eventually go away. You're left exhausted and hurt. Once the pain is gone, it takes days to rebuild from the exhaustion and flush out all the shitty drugs you've had to pump yourself full of.
When people recover from an illness with antibiotics you often hear people say -- oh, it takes it out of you. Takes weeks to get over those terrible antibiotics. But you never hear, oh, that awful oxynorm. Takes weeks to get those drugs out of your system! Insert with tramadol, morphine, meloxicam.
I recently overheard a discussion in which two people were discussing a third party using a lot of paracetemol. And how taking lots of pain killers was a blight on society. I had to laugh. Paracetemol?! Mwah ha ha. How I wish I was one of those people who never needed anything and considered it a last resort.
I think I've actually got an incredibly high pain tolerance. It's how I get on with life. I shop. I cook. I mend and sew. I create and paint and play Barbies. I parent very well. I've done charity work.
I hurt but I carry on.
I was told the other day that you'd 'never know' anything was up with me. Sigh, I think on the inside. I wish I went purple. Or had stripes. Or big fins. Even a big fish head. I responded that I walk slower than most people. And take time with things because I have to think very slowly to make sure I'm not making social mistakes.
I was grateful that these people asked about my illness and I got to tell them more. I was grateful for their empathy and for their kind words about how well I carry myself.
I guess that's another way the illness hurts.
If I want to lie down on the floor and sob and openly express my emotions about it all, am I not carrying myself very well? Am I doing a disservice to myself or others with chronic illness by not carrying myself well?
My daughter seems to struggle with it at the moment. She wants me to be a willing participant in her play and I am finding it hard to explain to hurt what it means when I say 'Mummy hurts'. I've tried to explain that I only have certain amounts of energy. She hasn't quite grasped that mental energy is different to physical energy and I have limited amounts of both.
I feel immense dimensions of guilt.
For not bringing in an income. For costing my family money. For having to bail out of social events. People don't get that. They think you're a flake or just finding any old excuse to not go out.
That causes guilt too. If they'd just ask -- are you avoiding me or do you really hurt they'd get so much more knowledge and no one would get hurt feelings.
People are biased by illness. They either find you a bludger or have bad memories of someone else with illness. Maybe illness killed off someone they loved desperately and you remind them of that pain. Not many people choose to let you tell your own story.
That hurts too.
It hurts to hurt.
I remember once a nurse told me to pray for pain relief. "It can't hurt" she said, not knowing the pun. Oh how I wanted to point it out but didn't. I didn't want to appear sacrilegious.
”The greatest evil is physical pain.” – St. Augustine
Oddly enough, nothing has taken away the pain. Not even prayer. As much as I had hoped a good word with the big man upstairs was going to help, I wasn't really surprised.
Today, my arms hurt. My fingers ache. My legs burn. I trip over my heavy elephant feet. I am tired and plagued with exhaustion. But I have promised a trip to the beach and a plate of hot chips. I have to pack to catch a flight tomorrow and it's overwhelming.
This is when I actually use prayer. Lord, I say, please grant me the patience and the endurance to get through today. To hold my tongue and to love my daughter unconditionally.
It's one of those days when I say: Everything hurts.
It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. -- Julius Caesar
About Me
- Jen
- I'm Jen and this is my blog. I'll take you through my diagnosis and life with an incurable illness. In 2008 I was diagnosed with Familial Mediterranean Fever but in July 2010 I was diagnosed with Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome. (google Familial Hibernian Fever) I'd really like to work as a fertility educator or an arthritis educator. I enjoy baking, trying to find 'good' Mexican food in NZ and my dream is to vacation in Tahiti. I'd trade money for Sleep, cats and warm weather.
On Your Diagnosis Journey?
Start Here.
The Spoon Theory
* An Open Letter To Those Without Invisible Disability Or Chronic Illness
* You're Not Lazy, You're Sick
Lab Tests
* Autoimmune Disease Tests
* Autoimmune Labs 101
* Lab Tests Online (AU)
* University of Washington
* Pediatric Rheumatology
* ANA Test
* Autoimmune Lab Tests
* Laboratory Diagnosis
* Wrong Diagnosis
* Lab Tests Online
* Immco Diagnostics
Familial Hibernian Fever
* Wikipedia
* Traps
* In Children
* Patient Experiences
* NCBI
* The Cleveland Clinic
* Gene Dx
* Healthy Parent
* Q J Medical Journal
* British Medical Journal
* Anaesthetist.com
* NIAMS
* Wrong Diagnosis
* Cigna
* John Hopkins
* Arthritis Research
* TRAPS PDF
Familial Mediterranean Fever
* A good FMF Resource
* FMF -- Definitions
* Children's Health
* FMF from State University
Autoinflammatory Diseases
* British Medical Journal PDF
* Medscape
* NIH News
* Cell.com
* Autoinflammatory vs Autoimmune
Lupus
* Lupus UK
* Medicine Net
* Kid's Health
* Web MD
* UK Lupus
* Mayo Clinic
* Wikipedia
* Lupus Foundation of America
* Lupus Lab Results
Lyme Disease
* Igenex Lab -- Start Here
* Under Our Skin
* Diagnosis & Testing
* How to find a LLMD
* Finding a Doctor
* eHow.com Find a LLMD
* Lyme Disease Resource
* Linda's Lyme Disease Journal
Rheumatoid Arthritis
* Wikipedia
* Medicine Net
* Arthritis Foundation
* Mayo Clinic
* National Rheumatoid Arthritis Society
* WebMD
Still's Disease
* Still's Disease PDF
* International Still's Disease Foundation
* Medicine Net
* Wikipedia
* Mayo Clinic
* Medline Plus
* Arthritis Insight
* Arthritis Foundation
* About.com
Genetic Diseases
* Medicine Net
* Wikepedia
* Genomics
* Genetic Disease Foundation
* Medline Plus
Chronic Illness & Emotions
* Coping with Persistent Pain PDF
* Chronic Pain & Depression
* Managing Pain
* Chronic Illness Coach
* Cognition, Emotion & Chronic Illness
* Rest Ministries
* Living with Chronic Illness
* Understanding Emotions & Chronic Illness
* The Many Emotions of Chronic Arthritis
* Coping with Chronic Illness
* Illness & Anger
* Emotions of Chronic Fatigue
* Dealing with a Health Condition
* Emotions of Chronic Pain Management
* Experiencing & Expressing Emotions
* Self-Esteem for People with Disabilities
* Understanding & Treating Depression
* When is Anger a Problem?
* Expressing Anger?
* Overcoming Anger & Aggression
* Relaxaction
* Relaxation Audio Files
* How Counseling Helps
* Affirmations for Building Self-Esteem
* Understanding Emotional Responses
* Grief & Grieving
* Dr. Bob's Online Pamphlet Collection
Nutritional Support
* Anti-Inflammatory Herbs
Safety of Commonly Prescribed Drugs
* NSAIDs & Stomach Pain
Other Reads
* What is Heartbreak?
* Twin Loss NZ
* International Baby Lost Mother's Day
* The Pregnant Chicken
Memes
* Infertile Panda
* Chronic Illness Cat
Start Here.
The Spoon Theory* An Open Letter To Those Without Invisible Disability Or Chronic Illness
* You're Not Lazy, You're Sick
Lab Tests
* Autoimmune Disease Tests
* Autoimmune Labs 101
* Lab Tests Online (AU)
* University of Washington
* Pediatric Rheumatology
* ANA Test
* Autoimmune Lab Tests
* Laboratory Diagnosis
* Wrong Diagnosis
* Lab Tests Online
* Immco Diagnostics
Familial Hibernian Fever
* Wikipedia
* Traps
* In Children
* Patient Experiences
* NCBI
* The Cleveland Clinic
* Gene Dx
* Healthy Parent
* Q J Medical Journal
* British Medical Journal
* Anaesthetist.com
* NIAMS
* Wrong Diagnosis
* Cigna
* John Hopkins
* Arthritis Research
* TRAPS PDF
Familial Mediterranean Fever
* A good FMF Resource
* FMF -- Definitions
* Children's Health
* FMF from State University
Autoinflammatory Diseases
* British Medical Journal PDF
* Medscape
* NIH News
* Cell.com
* Autoinflammatory vs Autoimmune
Lupus
* Lupus UK
* Medicine Net
* Kid's Health
* Web MD
* UK Lupus
* Mayo Clinic
* Wikipedia
* Lupus Foundation of America
* Lupus Lab Results
Lyme Disease
* Igenex Lab -- Start Here
* Under Our Skin
* Diagnosis & Testing
* How to find a LLMD
* Finding a Doctor
* eHow.com Find a LLMD
* Lyme Disease Resource
* Linda's Lyme Disease Journal
Rheumatoid Arthritis
* Wikipedia
* Medicine Net
* Arthritis Foundation
* Mayo Clinic
* National Rheumatoid Arthritis Society
* WebMD
Still's Disease
* Still's Disease PDF
* International Still's Disease Foundation
* Medicine Net
* Wikipedia
* Mayo Clinic
* Medline Plus
* Arthritis Insight
* Arthritis Foundation
* About.com
Genetic Diseases
* Medicine Net
* Wikepedia
* Genomics
* Genetic Disease Foundation
* Medline Plus
Chronic Illness & Emotions
* Coping with Persistent Pain PDF
* Chronic Pain & Depression
* Managing Pain
* Chronic Illness Coach
* Cognition, Emotion & Chronic Illness
* Rest Ministries
* Living with Chronic Illness
* Understanding Emotions & Chronic Illness
* The Many Emotions of Chronic Arthritis
* Coping with Chronic Illness
* Illness & Anger
* Emotions of Chronic Fatigue
* Dealing with a Health Condition
* Emotions of Chronic Pain Management
* Experiencing & Expressing Emotions
* Self-Esteem for People with Disabilities
* Understanding & Treating Depression
* When is Anger a Problem?
* Expressing Anger?
* Overcoming Anger & Aggression
* Relaxaction
* Relaxation Audio Files
* How Counseling Helps
* Affirmations for Building Self-Esteem
* Understanding Emotional Responses
* Grief & Grieving
* Dr. Bob's Online Pamphlet Collection
Nutritional Support
* Anti-Inflammatory Herbs
Safety of Commonly Prescribed Drugs
* NSAIDs & Stomach Pain
Other Reads
* What is Heartbreak?
* Twin Loss NZ
* International Baby Lost Mother's Day
* The Pregnant Chicken
Memes
* Infertile Panda
* Chronic Illness Cat
