Psoriatic Arthritis Journal - 2.5 year Update Page 63

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Re: Psoriatic Arthritis Journal

Postby nicoles » Thu Oct 11, 2012 12:52 pm

Michelle - you mean Bob "I'll just add a happy little cloud" Ross? :lol: :lol: :lol: :lol: :lol: Oh, he was so fun!

You know, he talked, but a lot of it didn't make that much sense, as I recall. He more showed, if you know what I mean. Talking coherently and linearly when you are painting is near impossible!

Moonwatcher, and Michelle, I was thinking about what you both wrote and talking about this with my husband last night - he writes, too, Moonwatcher! - on our walk.

I was saying that when I was younger all my friends were either visual artists of some sort, or musicians. And we all hung out in this very non-verbal way. A lot of intuitive communication, and that feeling of being comfortable with people enough that just being in their company is lovely, no need for words.

He said that he found that surprising because he thinks I am actually very chatty and a good communicator (isn't he nice!) and that made me think back. And I pinpointed when I became a more verbal person - in my 20's I lived through a series of very traumatic events in a very short span of time. I am not up for going into details, but one included being on a plane which had an engine explode in mid-air, and they were all equally dramatic. I had PTSD and was an emotional wreck and really needed to learn how to communicate my needs and emotional states clearly and effectively in order to avoid unpleasant interactions with people who really had no idea how I was feeling, and could not be expected to. Having a merely unpleasant conversation was enough to send me into an almost suicidal state, which was very unlike me, and I truly wanted to avoid that at all costs.

So I learned how to talk, but that brain is very different from creative mind.

------------------------------------------------------------------------------

Speaking of emotional rollercoasters, I am going to make a confession, one I have not made in this journal yet. This confession is that sometimes I fall into the negative line of thinking that goes something like this: "Bad things (like autoimmune disease) happen to me and that must be because I am a bad person."

I am particularly susceptible to this kind of thought when I am tired or overwhelmed and even more so if I am both of those things and hear about something very fortunate happening to someone else I know. I don't resent their luck so much, it is more like a self-denigration response, like ,"I am not a part of the good, fortunate people club, they won't like me or respect me because of my problems."

Before I go on I just want to say that I do not actually believe this - it just kinda sneaks up and decks me one out of the blue here and there, and, like I said, especially when I am tired or overwhelmed. (No surprise to that!)

So my husband of course is not a fan of this thought process, not least of which because it puts me in a foul and negative mood, but also because he does not believe it at all. Since meditating regularly I have gained more perspective on that type of feeling, too - I don't give it as much credence and even though I might still feel emotionally blah about it, I am confidant that it will pass.

I bring this up because we had a fascinating (for me) conversation about it a couple of nights ago. I was mentioning being in that mood, and my perspective, and he said that being raised strictly Catholic, he always had a relationship with those kinds of thoughts as "other" or words coming from that ole rebellious fallen angel, with his slander and lies. And that he thinks immediately of those kinds of thoughts as lies attempting to beat down the good in him.

What is interesting to me is that I was raised Catholic as well, but not strict by any means, and never really made that association. It was a great revelation, I have to say! I have long suspected that my biggest obstacles come from a lack of confidence in myself, and a general pessimism about the world, although I do spend much of my time optimistic and with abundant confidence. It is just at crucial junctures that I lose faith in myself, and as they are, well, crucial, this can be limiting.

I also believe that regarding negative thoughts as "other" and decreasing their impact does not have to be necessarily a religious endeavor - it is just as effective to look at the whole things as a metaphor that to believe it literally.

It is like this quote from Milton's Paradise Lost:

Milton wrote:"A Dungeon horrible, on all sides round
As one great Furnace flam'd, yet from those flames
No light, but rather darkness visible
Serv'd onely to discover sights of woe,
Regions of sorrow, doleful shades, where peace [ 65 ]
And rest can never dwell, hope never comes
That comes to all
"


"Hope never comes that comes to all" being a paradox, I suppose you could interpret it that Hope comes to all, but never comes to those who don't see it, or who don't look.

And since Milton was Protestant he may have been trying to emphasis that salvation is available through faith rather that solely rote actions, which is what this has to do with anything in my journal.

But I am losing a grip on how to explain that connection now. I just know that I had instinctual faith that this WOE would help, and although I "acted" a lot to make that happen, the faith is what really drove me to stay on course.

And when I have those negative thoughts, they are incredibly sabotaging, and to what end? What purpose? Does it help me or anyone else? Not really. Not at all. This is part of why I did not write about these negative thoughts in here until now. I didn't want to feed the flames of anyone else's difficult moments with having an autoimmune disease. I know there are times when I am emotionally raw enough that just hearing a negative perspective can really get to me.

I guess I wanted to write about it now because I am coming to see that it is just part and parcel of dealing with a difficult thing. And as I accept that at times I am more tired than others and need to rest, but it does not mean that I am not much healthier than I was before I started this, I can accept the fact that sometimes I will get down about it, and prepare accordingly, or have a plan of action or a good bolstering quote to look at when the dark clouds gather over my head.

OK, I am a rambler today. Just going to end the post here, can't figure what else to say! I am beginning to move into "art brain" with all this philosophizing. :)
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Re: Psoriatic Arthritis Journal

Postby nicoles » Fri Oct 12, 2012 1:12 pm

I like to keep up on news about new information for drugs to treat psoriasis and psoriatic arthritis, not because I am looking for drugs to take, but because the reports usually describe the mechanism of action the pharmaceutical utilizes, and that helps me understand how the immune system functions or "dis"-functions.

This new one is about the psoriasis drug Brodalumab, which apparently is:

American College of Emergency Physicians wrote:Brodalumab (Amgen) is a human monoclonal antibody directed against the interleukin-17A receptor as a means of quelling inflammatory cytokines. Another humanized monoclonal antibody that neutralizes interleukin-17, ixekizumab (Eli Lilly), was also the subject of a recently published, encouraging phase II study (N. Engl. J. Med. 2012;366:1190-9). Secukinumab (Novartis) is another fully-human monoclonal antibody directed against IL-17A, which has completed several successful phase II studies. These anti-IL-17 biologics are being considered as possible new therapies for other inflammatory diseases, including psoriatic arthritis and rheumatoid arthritis.


Biologics are all risky, and are all linked to possible cancer and other immune dysfunction, as well as "infusion events," where the patient gets all woozy and might die in the infusion chair. And sometimes they seem to cause more autoimmunity. Go figure.

Oh,hey, and there is also this, right there in the article:

American College of Emergency Physicians wrote:Dr. van de Kerkhof cautioned that from a safety standpoint, it will be important to scrutinize the upcoming large, definitive phase III clinical trials of these agents for evidence of an increase in infections, particularly Staphylococcus aureus and Candida albicans.


And just take a look at the warning list for another biologic drug, Remicade:

janssenaccessone.com wrote:Important Safety Information for REMICADE® (infliximab)

SERIOUS INFECTIONS

Patients treated with REMICADE® (infliximab) are at increased risk for developing serious infections that may lead to hospitalization or death. Most patients who developed these infections were taking concomitant immunosuppressants such as methotrexate or corticosteroids. Discontinue REMICADE® if a patient develops a serious infection or sepsis.

Reported infections include:

Active tuberculosis (TB), including reactivation of latent TB. Patients frequently presented with disseminated or extrapulmonary disease. Patients should be tested for latent TB before and during treatment with REMICADE®.1, 2 Treatment for latent infection should be initiated prior to treatment with REMICADE®.
Invasive fungal infections, including histoplasmosis, coccidioidomycosis, candidiasis, aspergillosis, blastomycosis and pneumocystosis. Patients may present with disseminated, rather than localized, disease. Empiric anti-fungal therapy should be considered in patients at risk for invasive fungal infections who develop severe systemic illness.
Bacterial, viral, and other infections due to opportunistic pathogens, including Legionella and Listeria.
The risks and benefits of treatment with REMICADE® should be carefully considered prior to initiating therapy in patients with chronic or recurrent infection. Closely monitor patients for the development of signs and symptoms of infection during and after treatment with REMICADE®, including the possible development of TB in patients who tested negative for latent TB infection prior to initiating therapy.

Risk of infection may be higher in patients greater than 65 years of age, pediatric patients, patients with co-morbid conditions and/or patients taking concomitant immunosuppressant therapy. In clinical trials, other serious infections observed in patients treated with REMICADE® included pneumonia, cellulitis, abscess, and skin ulceration.

MALIGNANCIES

Lymphoma and other malignancies, some fatal, have been reported in children and adolescent patients treated with TNF blockers, including REMICADE®. Approximately half of these cases were lymphomas, including Hodgkin's and non-Hodgkin's lymphoma. The other cases represented a variety of malignancies, including rare malignancies that are usually associated with immunosuppression and malignancies that are not usually observed in children and adolescents. The malignancies occurred after a median of 30 months after the first dose of therapy. Most of the patients were receiving concomitant immunosuppressants.

Postmarketing cases of hepatosplenic T-cell lymphoma, a rare type of T-cell lymphoma, have been reported in patients treated with TNF blockers, including REMICADE®. These cases have had a very aggressive disease course and have been fatal. All reported REMICADE® cases have occurred in patients with Crohn's disease or ulcerative colitis and the majority were in adolescent and young adult males. All of these patients had received treatment with azathioprine or 6‑mercaptopurine concomitantly with REMICADE® at or prior to diagnosis. Carefully assess the risks and benefits of treatment with REMICADE®, especially in these patient types.

In clinical trials of all TNF inhibitors, more cases of lymphoma were observed compared with controls and the expected rate in the general population. However, patients with Crohn's disease, rheumatoid arthritis, or plaque psoriasis may be at higher risk for developing lymphoma. In clinical trials of some TNF inhibitors, including REMICADE®, more cases of other malignancies were observed compared with controls. The rate of these malignancies among patients treated with REMICADE® was similar to that expected in the general population whereas the rate in control patients was lower than expected. Cases of acute and chronic leukemia have been reported with postmarketing TNF-blocker use. As the potential role of TNF inhibitors in the development of malignancies is not known, caution should be exercised when considering treatment of patients with a current or a past history of malignancy or other risk factors such as chronic obstructive pulmonary disease (COPD).

CONTRAINDICATIONS

REMICADE® is contraindicated in patients with moderate to severe (NYHA Class III/IV) congestive heart failure (CHF) at doses greater than 5 mg/kg. Higher mortality rates at the 10 mg/kg dose and higher rates of cardiovascular events at the 5 mg/kg dose have been observed in these patients. REMICADE® should be used with caution and only after consideration of other treatment options. Patients should be monitored closely. Discontinue REMICADE® if new or worsening CHF symptoms appear. REMICADE® should not be (re)administered to patients who have experienced a severe hypersensitivity reaction or to patients with hypersensitivity to murine proteins or other components of the product.

HEPATITIS B REACTIVATION

TNF inhibitors, including REMICADE®, have been associated with reactivation of hepatitis B virus (HBV) in patients who are chronic carriers. Some cases were fatal. Patients should be tested for HBV infection before initiating REMICADE®. For patients who test positive, consult a physician with expertise in the treatment of hepatitis B. Exercise caution when prescribing REMICADE® for patients identified as carriers of HBV and monitor closely for active HBV infection during and following termination of therapy with REMICADE®. Discontinue REMICADE® in patients who develop HBV reactivation and initiate antiviral therapy with appropriate supportive treatment. Exercise caution when considering resumption of REMICADE® and monitor patients closely.

HEPATOTOXICITY

Severe hepatic reactions, including acute liver failure, jaundice, hepatitis, and cholestasis have been reported rarely in patients receiving REMICADE® postmarketing. Some cases were fatal or required liver transplant. Aminotransferase elevations were not noted prior to discovery of liver injury in many cases. Patients with symptoms or signs of liver dysfunction should be evaluated for evidence of liver injury. If jaundice and/or marked liver enzyme elevations (eg, > 5 times the upper limit of normal) develop, REMICADE® should be discontinued, and a thorough investigation of the abnormality should be undertaken.

HEMATOLOGIC EVENTS

Cases of leukopenia, neutropenia, thrombocytopenia, and pancytopenia (some fatal) have been reported. The causal relationship to REMICADE® therapy remains unclear. Exercise caution in patients who have ongoing or a history of significant hematologic abnormalities. Advise patients to seek immediate medical attention if they develop signs and symptoms of blood dyscrasias or infection. Consider discontinuation of REMICADE® in patients who develop significant hematologic abnormalities.

HYPERSENSITIVITY

REMICADE® has been associated with hypersensitivity reactions that differ in their time of onset. Acute urticaria, dyspnea, and hypotension have occurred in association with infusions of REMICADE®. Serious infusion reactions including anaphylaxis were infrequent. Medications for the treatment of hypersensitivity reactions should be available.

NEUROLOGIC EVENTS

TNF inhibitors, including REMICADE®, have been associated in rare cases with CNS manifestation of systemic vasculitis, seizure, and new onset or exacerbation of CNS demyelinating disorders, including multiple sclerosis and optic neuritis, and peripheral demyelinating disorders, including Guillain-Barré syndrome. Exercise caution when considering REMICADE® in patients with these disorders and consider discontinuation if these disorders develop.

AUTOIMMUNITY

Treatment with REMICADE® may result in the formation of autoantibodies and, rarely, in development of a lupus-like syndrome. Discontinue treatment if symptoms of a lupus-like syndrome develop.
ADVERSE REACTIONS

In clinical trials, the most common REMICADE® adverse reactions occurring in > 10% of patients included infections (eg, upper respiratory, sinusitis, and pharyngitis), infusion-related reactions, headache, and abdominal pain.
USE WITH OTHER DRUGS

The use of REMICADE® in combination with anakinra, abatacept or tocilizumab is not recommended. Care should be taken when switching from one biologic to another, since overlapping biological activity may further increase the risk of infection.
VACCINATIONS

Live vaccines should not be given with REMICADE®. Bring pediatric patients up to date with all vaccinations prior to initiating REMICADE®. Exercise caution in the administration of live vaccines to infants born to female patients treated with REMICADE® during pregnancy.


It's enough to make your head spin. I better get off the merry-go-round and go for a walk! :lol: :lol: :lol:
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Re: Psoriatic Arthritis Journal

Postby moonwatcher » Fri Oct 12, 2012 3:24 pm

It's enough to make your head spin.


. . .and more!!! :lol: I'm with you that the best medicine after reading all THAT is to go for a walk!

I also wanted to say that I read your previous post with respect and appreciation for your journey, and the courage it takes to approach how to talk about something like that. I honor the progress you've made, and have no doubt it will continue. The Milton quote was a powerful way of getting at it. It's sort of ironic that for all his Protestant devotion, Lucifer is BY FAR the most compelling character in Paradise Lost--at least the bits of it I've read.

Oh, and "art brain." I sure know what that is. Most of my writer friends don't seem to have it like I do. They get ideas. I get pictures or hear things. Anyway. :) Also liked the image of you and your husband turning these things over in your conversation as you walked together.

And heartfelt thanks for your congratulations and support on my news. :)

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Re: Psoriatic Arthritis Journal

Postby Lesliec1 » Sat Oct 13, 2012 9:30 pm

I've read your journal before but I'm re-reading it. I want to use you as a model as I start my journal. You are so self-aware. (I'm only through the first half. The rest tomorrow.)

My RA started around the same time as yours. I totally appreciated that you noticed what the economy was doing then (tanking.) I am such a stress-monster, I wouldn't be surprised if many of us got sick then. The whole darn country was/is depressed and stressed.

Also, you had pain that traveled. Mine used to travel in a shocking way. I never understood that and it doesn't do it now. But I'd have horrible pain say, in my feet, and then the next morning I was completely fine. One day my shoulder, the next a knee. So weird. I wonder if I have different types of arthritis.

Most of all I love that you say "patience" several times. I am not patient at all so I want to keep repeating that to myself.
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Re: Psoriatic Arthritis Journal

Postby nicoles » Mon Oct 15, 2012 8:35 am

Hey MoonwatcherThanks. And yes, that walk was absolutely the ticket for the roller-coaster that is researching side effects of biologics! :lol: :lol: :lol:

Paradise Lost is one of my favorites, in small doses only, though. :wink:

Leslie! What's up? :-D

Yes! - Stress and AI disease are very related, and I am (was?) a big stress monster, too. Working on that, mostly with meditation, plus learning not to catastrophize things that are not yet real, just in my head.

That travelling pain thing is weird, I know, right?

Too right! Patience. Not my strong suit when I started this, although that muscle has grown quite a bit over the last couple of years. And it gets easier once you are just doing the diet without real expectations, just attention to results as they come, whatever they may be.

Things I have learned:

1) Your body does want to heal. So that's good.

2) Your body will heal if you treat it right and get out of the way. Easier said than done, I know.

3) Your body decides what gets healed first, without real input from you and you preferences. This one can be a bummer, but in the end it is good.

and:

4) Sometimes it feels worse before it gets better. I'd notice this a lot - I'd get really bad pain, or get sick, and be like, "What?!?!? Am I getting worse?!?!?!" but then it would pass in due time and I'd be even better than I was before. Happened once, I thought it was a fluke. Second and third time I started to acknowledge the pattern. Now if I feel poorly, I almost get excited, like, "Oh goody, now I get a chance to heal even more!" except crankier because I don;t feel good at the time. :lol: :lol: :lol:
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Re: Psoriatic Arthritis Journal

Postby moonwatcher » Mon Oct 15, 2012 9:40 am

Great true to life list, nicoles! This one's my favorite:

3) Your body decides what gets healed first, without real input from you and you preferences. This one can be a bummer, but in the end it is good.


Good stuff. Thanks. :-)

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Re: Psoriatic Arthritis Journal

Postby nicoles » Mon Oct 15, 2012 10:24 am

Thanks Moonwatcher! :)

Bummer Alert:

In-Laws Update

Well, it has been about a month and the in-laws are starting to slip on diet. MIL had chicken and yogurt, claims she did not know better, and that it's OK because she did not have a heart attack.

FIL is still trying, but has included Daiya Cheese and non-vegan frozen waffles on his menu.

A clue that something was amiss was that they seemed like they did not want us to come over, when in weeks past they were thrilled to have us visit.


We know they both know better, of course. And it is no surprise it happened this week: FIL is back to work full-time, at his job which he hates, and MIL is home all day and lonely, and wants to soothe herself with food. Plus, none of their kids except us had called or visited all week.

It was really striking, actually, to see the difference. MIL has noticeable gained weight, looked awful and tired, was cranky, irritable, distracted and on her GameBoy instead of interacting. FIL was less noticeably worse, but he did seem more tired, and he definitely seemed frustrated with MIL.


Now, MIL has an eating disorder, and is a food addict - so are two of her sisters, who both have been in OA for more than 25 years. Once upon a time she was in OA, and did the HOW program and lost 100 pounds. She is not doing anything like that now, and the last time I heard her talk about her meetings or her sponsor, she was saying that she did not tell her sponsor that she ate Prime Rib or something because - get this - she did not want to hurt her sponsor's feelings.

Ha! Talk about denial and rationalization.

So, for my own sake, and hopefully my husband's, I think I need to come to grips with the fact that we are dealing with an addict who will not change based on our will, only their own volition. It might sound harsh, but I believe they are both up for being manipulative to get attention, and I think they both do it with poor food choices because they know we really react to that. However, I think my MIL does this more than my FIL.

My FIL is an alcoholic who gave up drinking 30 years ago using AA. My husband was recently noticing that when he was younger, his Dad never ate junk food, and they never had alcohol in the house. Then, after FIL started hosting Knights of Columbus meetings in the house, there was (is!) always a bunch of alcohol around - whiskey, wine, beer, Mike's Hard Lemonade, gin, etc etc, and the junk food started creeping back in. So we wonder if this is something, as well as MIL's junk food around the house, that is not supportive of his addiction recovery.

Won't know for sure, ever, since he won't talk about it, of course, and anyway, analyzing too much starts the crazy-making, right?

But all we can do is accept the fact that this is who they are nd where they are. My husband is devastated, and today is his first day at the new job, so I feel really bad for him. I am pretty concerned, and I have to say I was really saddened to see what had happened.

It is always disappointing when people make poor choices and don't take good care if themselves. Now I just have to figure out how to cope with that and not allow it to trickle down and "justify" me making poor choices for my own health.
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Re: Psoriatic Arthritis Journal

Postby Chile » Mon Oct 15, 2012 10:45 am

It is frustrating and disappointing when people you love choose not to do what you know would help them. For years, I've encouraged my mother-in-law to eat better. She loves my healthy cooking but I can't prepare all her meals (especially now living over 100 miles away). She claimed she couldn't cook as good as me so I went to a lot of effort to put together a notebook for her with my easiest recipes. She claimed they didn't come out the same when she made them and the notebook now collects dust. I put together "instant" meals for her when she broke her hip and was less mobile. She liked them but won't put any effort towards making her own, even Jeff's super-easy meals.

We talk to her once a week on the phone. Every week she tells us she knows she needs to eat better and promises she will. We used to encourage her to do that. Now we recognize that she feels obligated to tell us this and that she won't really change her ways. We quit reacting to what she was saying and accepted that she's going to eat what is easy, convenient, and that she likes. It's her life and her choice. Nothing was really going to change but by no longer reacting, it has removed quite a bit of stress for all of us.

Would we like her to be healthier, which she could be if she ate better? Sure. Is it going to happen? Apparently not. After over a decade of dealing with this, it was time to let go.
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Re: Psoriatic Arthritis Journal

Postby nicoles » Mon Oct 15, 2012 11:21 am

Hey Chile - I was just looking at your new blog, maybe even as you were posting here! Mind-meld :shock: :lol:

Your situation sounds really hard and really familiar. Funny thing about people who don't really want to take care of themselves - they don't really come out and say it. Life should be so easy, right? But you can really tell the difference between when people are trying and making mistakes, but sincerely want to be doing everything right, and when people are pretending they want to and coming up with excuses for why they can't that are really just a smokescreen for conflict avoidance and denial.

NO doubt letting go is the best advice. It will likely be easier for me than my husband, given that they are his parents, but on the other hand, he has been dealing with them his whole life, so once he recuperates he might be up for it.

Right now I am just. so. disappointed. Not just in them, in so many other people who I know. My uncle who kept smoking after a leukemia diagnosis, and who died this summer. A friend with cancer who continues smoking as well. Another relative with cancer who drinks way more that is helpful, and who knows full well it makes the cancer worse.


I hope letting go of helping your mother-in-law is working for you, Chile. I guess I'll be doing the same over here. I just have to figure out how.
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Re: Psoriatic Arthritis Journal

Postby Chile » Mon Oct 15, 2012 11:26 am

Just remember: letting go does not mean ceasing to care. It is simply ceasing to hold on to an emotional attachment to what someone else does. You cannot control what someone else chooses to do but you can control how you respond to it emotionally.
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Re: Psoriatic Arthritis Journal

Postby nicoles » Mon Oct 15, 2012 11:37 am

Great point, Chile. I am definitely still feeling hurt and angry, so my inclination is to "let go" by "cutting off emotionally." I know this is not the right way.

I right now am trying to sort out what is enabling and what is being caring. For example, my MIL will say something like, "just one cookie is not so bad, (or just one Burger, etc.)" and of course, she wants everyone to agree or she wants the attention of getting into a disagreement about that.

Personally I don't want to waste my time arguing when she is not really listening, only looking for confirmation of her own behavior. But I also don't want to enable and say, "Sure, that's fine." for some reason I only know how to do one or the other. Looking for that middle ground.
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Re: Psoriatic Arthritis Journal

Postby Chile » Mon Oct 15, 2012 1:37 pm

My response would probably be, "Well, personally, I can never stop with just one, so it's best for me to avoid them," and then laugh.

But, yeah, I hear what you're saying about being hurt and angry. Heck, I have that reaction to MY OWN choices that aren't so great. Doesn't do any more good for me to be ticked off at myself, though, than it does to be angry at my MIL. :duh:
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Re: Psoriatic Arthritis Journal

Postby nicoles » Mon Oct 15, 2012 3:35 pm

Chile wrote:My response would probably be, "Well, personally, I can never stop with just one, so it's best for me to avoid them," and then laugh.


That's a good way. I might try just saying simply "I disagree" and then laugh. I like it because it is the truth, in that I am not lying, and also people can agree to disagree.

Chile wrote:But, yeah, I hear what you're saying about being hurt and angry. Heck, I have that reaction to MY OWN choices that aren't so great. Doesn't do any more good for me to be ticked off at myself, though, than it does to be angry at my MIL. :duh:


:lol: No, I guess it doesn't! I am still working on choosing my emotional reactions. At this point I'll take just accepting my emotional state without knee-jerk reacting.
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Re: Psoriatic Arthritis Journal

Postby nicoles » Tue Oct 16, 2012 12:43 pm

Still immersed in my reaction to the In-Laws' dietary choices, and thinking a lot about issues like taking responsibility for my own emotions and codependency/enabling behaviors.

It's interesting, from an emotional perspective, there is the fact that everyone I know in the world is not my personal responsibility. Yet from a knowledge perspective, it can feel like I have a responsibility to others to at least help educate them (teach them to fish, so to speak) to make some of their own dietary choices better.

In between those two places are the places where my emotions come in. Of course, I am fairly sure that this diet would help many people I know who are not well to get better or at least improve. And it is natural to care about the health and well-being of those I care about.

But where does it cross the line into unhealthy territory?

I am a worrier, undoubtedly, and that doesn't help. Looking at myself more closely the last few days, I think I am also unearthing some deeply repressed resentment that I can't* be in denial about eating habits as easily as someone else, because I get painful ramifications so quickly. In other words: Wah, wah, wah, I wanna eat junk food too! Imma poor, pooor baby. Baby wants a breaaaaak. :crybaby:

(* I know, can't is not accurate :lol: . Just highlighting my victimizing-myself attitude)

Well that's fair. I have been reacting to and coping with so many hard things in the past couple of years it is not so surprising that I would put this particular issue on hold, especially if it threatens what I see as my most preferred treatment option - diet.

But now that I know more about the extent to which it is there, I need to take better care of myself. I, like so many others, turned to food for comfort and distraction for most of my life, and also coffee, and alcohol at times. Don't do any of that now, and since I have a very limited range of food items that I can eat, the "treats" I have designated don't always feel like treats, unless I have been truly depriving myself beforehand.

But there is more to it. We are broke, and so I don't "treat" myself in other ways, either. Underneath it all, I have been feeling like all this financial hardship is my "fault" because I am the one who got sick, so I don't buy new clothes, get haircuts or do anything treat-y for my self, but I encourage my husband to because he is making the money.

I have also been feeling like I am a valueless person, because I am having a hard time making consistent money of any substance, and that is stressful, of course, but also I have been very hard on myself for that.

So helping others to eat better when they can eat so many more things (and still are unhappy and fall off the wagon) than I can might not be taking the best care of myself. And is definitely not the best way to help them, either. Looks like I have a lot of work on myself to tend to, and self-care to give.
Tough times don't last, tough people do

Read the results of my journey here: Nicole S. O'Shea vs. Psoriatic Arthritis

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Re: Psoriatic Arthritis Journal

Postby ♥ Amy ♥ » Tue Oct 16, 2012 1:05 pm

nicoles-
I've been reading your journal the past few days and I just wish I could reach in and give you a big hug.

You are so strong and your journey has been difficult but you are such a success. I hate hearing of the hard time with you in laws - but your last post is very very insightful into your own thoughts and ways to take care of yourself.

I find dealing with people the hardest thing to overcome on this WOE. I know that probably sounds superficial, but for me it's a really big hurdle right now. I eat out with my Sister and her daughter 3-5 times a week and my sister is very picky. So I usually go where she wants to eat, thus making my choices a last priority and generally pretty poor. I know I'm not doing myself any favors, but I want to be easy and go with the flow to baby her. Instead it just makes things worse for me.

Sorry to ramble on about myself - You just really got me thinking.

I definitely know you are not valueless and you should absolutely take good care of you. I make more money than my husband and sometimes its challenging the other way around too. Your hubby is probably so glad that he can provide for you too.
*Restart 12.28.13*
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