Friday, November 26, 2010

CGR or “Can't Get Respect”

My biggest problem with medical professionals, and sometimes people in general, is something I call CGR. I'm not formally diagnosed with it but some diagnoses make it more likely that you'll have this problem.

For many years I was being formally treated for depression and anxiety. This treatment included medication and therapy. Wanting to be responsible and honest I disclosed my medications to every doctor I saw. When asked about my diagnoses I would include the mental health stuff. As a result, almost every doctor's appointment ended with a suggestion that I talk to my therapist about whatever problem I'd gone in for.

Eventually I came off of my psychiatric medication and was well enough to stop therapy. My migraine preventative was traditionally used as an antidepressant. Naïvely, I expected to be able to clarify that with doctors and then be able to address symptoms that had previously been ignored. No such luck.

My neurologist finally changed my migraine preventative to an anti-convulsant called Topamax. Sometimes this medication is used to treat PTSD or bipolar disorder but that is much more rare than for Depakote. Once this change was made and I was off any medication that a non-psychiatrist might see as a psych med the quality of my care increased markedly. Problems such as chest pain and chronic nausea began to be investigated.

Some might say that this is related to my status as a cis gendered woman. However, Mr. Wacky, a cis gendered male, was once put on a SSRI by his GP to treat his fibromyalgia. After that the same doctor who had prescribed the SSRI would regularly ask if the symptom an appointment was about could be related to depression.

Having chronic pain or really any chronic health condition can lead to secondary depression and anxiety. The key word there is 'secondary.' Treating the primary conditions should help the secondary ones. Instead, when someone has CGR the primary conditions are blamed on the secondary ones. No wonder nothing changes in a positive way.

Sometimes people have a primary mental health condition as well as some other chronic one. These people deserve to have all of their conditions treated and deserve to be treated with respect. Yes, the mix of symptoms can be difficult to sort out

Also, I want to say that coming off my psych meds was the right thing for me. I found out that I'm not one of the people for whom they work well. So the stigma and side effects weren't worth the lack of benefit I got. If you're someone who benefits from anti-depressants, mood stabilizers, anti-psychotics etc then please by all means continue taking them. Ideally the stigma will be removed from taking these meds and needing them. That's the long term hope.

Friday, September 17, 2010

Having one disability is not an insurance policy

This is Invisible Chronic Illness Week, a time to create awareness. This is a pet peeves post to be honest.

Many people that I run into think that once you have one disability, especially a visible one, somehow you shouldn't be able to get another one. Perhaps it is that life shouldn't be that unfair. Perhaps it is that they can't see how something that rare could happen twice to the same person. Perhaps it is that it makes it more likely that it could happen to them. I don't know.

As a child every problem I had was chalked up to blindness. It didn't matter that I was the clumsiest person in my class. I was even the only blind child who needed adaptive PE. Somehow, it was just blindness. So, paraprofessionals and professionals aren't immune from this either.

When I was in college, a friend of mine with a spinal cord injury told me that the majority of people with a SCI also have chronic pain. I was shocked to learn that. At the time, I didn't see myself as a person with chronic pain and learning that my smiling, laughing, joking friends also had to deal with incredible pain really boggled me. In this case the mechanism of pain “goes with” the disability or mechanism of injury. In other words, the pain and the paralysis are both caused by the spinal cord injury so it's a little easier for the average person to get their head around. Even then, as a person with a disabilty it never occurred to me.

People tend to think that being blind or having a spinal cord injury somehow means that nothing else will ever go wrong with your body unless it is related to that. Lupus, how's that related to your blindness? Oh, is that the real reason you're blind? I know people with spinal cord injuries, cerebral palsy, and congenital blindness who have developed auto-immune disorders or other chronic health problems that have nothing to do with the disability that they had first.

Oh, and having EDS or another invisible health condition isn't some magical talisman against motor vehicle, industrial, or other accidents than can result in visible disabilities such as SCI or blindness.

Speaking specifically of invisible conditions, I've noticed that disbelief tends to mount if I make the mistake of listing all my diagnoses. The person I'm talking to could believe that I have EDS if that's all I had. However, telling them I have EDS and asthma makes them wonder if I'm a hypochondriac or otherwise like being sick. It doesn't matter that quite possibly some of my conditions are related or commonly appear together. It doesn't matter that asthma is pretty darn common.

Most of the chronically ill people I know have a huge list of diagnoses. Some interrelated and some not. Our list of medications and supplements are usually even longer. Yes, we have doctors advising us on the treatments we use and pay attention when we make any change to our treatment plan. Asking us if our treatment plan is causing our health problems the first time you meet us when we're not paying you for a consultation is rude. It comes across to me as blaming me for my health problems or disbelieving that I even have them.

The specifics don't really matter. I used examples that came to mind or I'm familiar with. This seems to apply no matter what visible or invisible disabilities or health conditions a person may have. Each person is different and it is important to remember that. The more diagnoses a person has the more complex their situation. And it isn't a matter of A + B + C = My Health. Usually it looks more like A + (B x C)^3 = My Health. Yeah, that sucks but it is. Ignoring it will not make it go away.

Friday, August 13, 2010

Thoughts on Death and Online Friends

This may seem like a personal issue but I'd like feedback from people on this. I also know I wasn't thinking about this issue before and I think that other people might not have either.

Mr. Wacky found out yesterday that an online friend of his passed away about a year ago. His family didn't know about his online friends, didn't know how to tell them, or didn't see it as important. We'll never know which it was.

Another person I know recently lost an online friend to homicide. It was difficult for the victim's online friends to find out what was going on.

Personally, a friend on Lupus-L, now defunct, died many years ago. I was very grateful when one of her family members took the time to write to the list to let us know. However, I've been on a few email lists over the years and a loved one using a deceased member's email account to notify the list doesn't always go over well. Some lists are not open to all so it wouldn't be possible for a loved one to join to notify the list.

I've been thinking a lot about this. I'm not sure how best to handle it. Mr. Wacky and I have a very small overlap of friends. I don't have email addresses for all of my friends. I contact them on Facebook or other Social Media sites.

Then I tell myself I'm being obnoxious even thinking that most people would care. However, beyond notifying people there are practical things like making sure Mr. Wacky knows varying passwords for our accounts with the utility companies, the bank, etc.

I have Ehlers Danlos syndrome that has not been formally typed. I definitely am hypermobile but I have some symptoms of vascular involvement. So, being aware that I could suddenly die isn't completely out of line although I'm in my mid thirties. Health issues aside, we could be in a car accident or the roof could cave in tomorrow.

Mr. Wacky is computer literate but neither of my parents really is. So, whatever document I come up with about who to notify and how has to be very simple and explanatory at the same time. Plus, during the stressful time after a death even usually simple tasks can be overwhelming.

I have a fairly well organized password manager. I use Pastor on my Mac. Another option for many operating systems is KeyPassX. So as long as Mr. Wacky has the password to that he will have access to the passwords needed to do the basics. It seems I need to make a document that will live on the desktop of my laptop with that password and basic instructions. What do I put in that document, however? It is hard to anticipate everything. While we are both aware that I could have a fatal aneurysm tomorrow and are comfortable mentioning it, it isn't something I want to spend a lot of time talking about. While everyone I might think of notifying knows I'm sick, I'm not sure that they've all made the connection that I could die today due to my health. I don't know if they'd really want to be notified of my death. Somehow, asking on Facebook etc for people to send me their email addresses so I can add them to my death notification list seems rather crass and vaguely manipulative.

While the Social Security Administration allows burial accounts up to a certain amount, I do not have one. I really wish that I did but I know I will be disposed of as a pauper. That's mostly okay with me. I just wish I could do something to reduce the stress on Mr. Wacky and/or my parents.

I wouldn't want to be notified of a death via Twitter. Facebook seems a bit better but not much. Honestly, nothing seems ideal. What do you have in place for notifying those who care about you in case of your death or hospitalization? How would you want to be notified if someone you cared about died or was hospitalized? Also, have you done anything to make things easier for your next of kin in the event of your death?

Sunday, July 04, 2010

Occupational Therapy

Almost every medical professional and lay person I've ever interacted with has been very anti-assistive device. (The only exception is low vision specialists who would offer me magnifiers and get upset when I said they didn't work for me.) The reasoning I've been given is that I should do everything I possibly can without help. Using tools will make things too easy for me and I will get weaker, do less, or some other bad thing will happen. If I suggested any sort of assistive device it was viewed as proof of “attention seeking behavior” and my inherent laziness.

From what I've read online, some doctors will advocate assistive devices to their patients. Some patients refuse them. I suspect that the patients who refuse the recommended devices might stick out in the doctor's mind. So doctors may set up a dichotomy in their heads between the types of patients who fight against assistive tech and those who ask for them. Doctors seem to judge patients in each group differently. Those who actively seek out assistive devices come across as demanding and wanting attention. While those who resist come across as strong and independent. In my mind, neither group is better than the other.

Since I pushed for assistive tech, I've had to figure out solutions on my own. We even ordered my wheelchair without consulting a professional. Overall, we've come up with the right solutions. I have a shower chair, a support cane, a wheelchair, a jar wrench, and other assorted gadgets. However, I've been asked why I use them by people who know that I'm sick. There always seems to be this question of “do you really need that?”

Some days I don't need the tools that I have. Other days they make things possible. They always make things easier. Somehow, wanting to do things in an easier way with less pain feels wrong due to the messages I've received.

So, when in the beginning of May I subluxated my left wrist so badly that it would no longer stay in place I wasn't sure what I'd do. After two weeks with my arm in a sling I realized that I needed outside help. So, I called my general practitioner and asked for a referral to occupational therapy. I'd heard that other people with Ehlers-Danlos syndrome had had some good experiences with occupational therapy so I decided to risk it.

Occupational therapy has been one of the best things I've ever done for myself. My OT's L. and A. actually listened to me in a nonjudgmental way. Due to some changes in how my referral was sent over they had already done some research on Ehlers-Danlos syndrome prior to my first appointment. However, they still respected that I probably knew more than they did. How refreshing! Together we started working on solutions for the things I found impossible as well as the things that were just difficult.

Overall, I've been believed it every step of the way. Plus my quality of life is valued. At first this was hard because I started to wonder if I had underestimated how sick/impaired I am. To some extent I had, and the Activities of Daily Living assessment questions really made that clear. Overall, what was going on was that L. and A. were not expecting me to wait until something was 100% impossible to find new ways to do it. If I have trouble eating once a week then we need to find a solution so that I can eat all the time. Before this I just skip meals when my hands were bothering me too much. Also, they want me to be as independent as possible. Yes, Mr. Wacky will help me with almost anything but it would be nice if I could do things independently if I wanted to.

I'm even getting help to do hobbies such as console gaming and knitting. Previously, it has felt like I was expected to simply drop my hobbies no matter how much physical or emotional benefit I got from them.

In addition to tools like can openers and modified forks we've done some work with splinting and strengthening. Splints will help to hold my joints in proper alignment and will hopefully help reduce the frequency of subluxation and dislocation. Strengthening should also help my muscles compensate for my tendons and ligaments which should result in fewer subluxations and dislocations too. I didn't think that popping out my joints was bad per se. Apparently, it is. Each time I do it I'm damaging something be it cartilage, bone, muscle, tendon, or ligament. This just isn't good.

I wouldn't say that occupational therapy has been easy. However, it has been helpful and that's more than I can say about most medical appointments. I still have to educate my medical team about some things but I'm actually getting concrete help that that is improving my quality of life now and may slow my rate of decline.

Friday, June 18, 2010

How I got my Med Contract

I'm lucky in that I've had a Medication Contract for chronic pain for several years now. It wasn't easy to get but it is possible.
I got my contract prior to my Ehlers-Danlos diagnosis. I had a diagnosis of fibromyalgia.
About 9 years ago I went to a pain specialist in desperation. The medication my Rheumatologist had given me wasn't helping and I knew I needed long term help. It was a mixed experience. I was believed and got put on maintenance medication promptly. However, this doctor did not believe in breakthrough medication. Plus, I used a small private pharmacy that would mail me my prescriptions because I can't drive. Somehow, my doctor thought it was a large mail order pharmacy and decided that somehow it was sign of drug seeking behavior especially after there was a dispute between the doctor's office and the pharmacy about what had been written on a script. (Of course I hadn't photocopied the script before I sent it off so I had no idea who was in the right.) We severed our relationship and I came off of Fentanyl patches cold turkey. Surprisingly I didn't have many withdrawal symptoms other than the return of the pain.
While I was on the patches for those far too short 3 months I began to learn what life could be like with less pain. Initially I slept a lot. That isn't a sign of a bad reaction. I had a huge debit in terms of quality sleep and as that got smaller I stopped sleeping so much. My thinking got much clearer. For me, pain and exhaustion makes me more fuzzy headed and when my pain is well managed my thinking is actually better. A pleasant surprise was that my depression and anxiety also improved.
Unfortunately, I moved after seeing that pain specialist and had some real problems with depression and anxiety partially due to a toxic friendship. Mr. Wacky saw how much having my pain controlled had helped me and encouraged me to look into getting back onto some form of pain medication.
This is where the mental health problems came into play. My general practitioner knew about my mental health problems and was understandably concerned about giving me controlled substances. He also wasn't entirely convinced my health problems weren't somatoform in nature but that's a different story. I gave my doctor and my therapist a release so they could talk to one another at this point. My therapist was able to reassure my GP about my stability. As far as I know she told him it was up to him to rule out physical causes for my problems because she wasn't qualified to say I wasn't physically sick. (She was an amazing therapist.)
Despite that my doctor was still hesitant. I'd been cooperative as I could be with him in efforts to both diagnose and manage my health. I'd also made a few suggestions to him that while not initially taken well, did end up being helpful such as a sleep study. I finally decided that I'd done everything I could to establish a good working relationship with him that showed that I cared about my health and was willing to work with him. I think it is important to note that neither Mr. Wacky nor I liked this doctor or thought he was competent but the important thing was to be cooperative and did not let him know how we felt.
Honestly, if I had a regular psychiatrist I would have preferred to have them do my pain management. I know another chronically ill person who does that. Having a mental health professional do my pain management would have simplified things, in that, I would not have been fighting to convince a doctor that I was mentally healthy enough for treatment in addition to convincing a doctor that I needed treatment. Ideally, a good mental health professional would have realized that my depression and anxiety were compounded by my high pain level. Also, hopefully a mental health provider would be less affected by the “can't get respect” side effect of being on psychiatric medications or having a psychiatric diagnosis.
Finally in desperation, I wrote a five page letter to my doctor. I was brutally honest in that letter about what the pain was keeping me from doing. My filthy house was described in detail. I also listed the things I had tried to manage my pain and the non-drug things I did to cope. Importantly I also told him what I hoped to do if I was in less pain. I think telling my GP that I hoped to be able to exercise if my pain was better managed helped.
Luckily, my detailed letter finally swayed my GP and we started the process of getting me on maintenance and breakthrough medication. The first step was the paperwork to cover him legally and to make sure I knew my responsibilities. Next was a urinalysis to make sure I was't lying about my drug use. Since I had trouble with skin breakdown while taking Fentanyl patches the GP and I discussed pill options. My doctor wanted to make sure I could afford my maintenance medication even if for some reason I lost Medicare Part D.
Unfortunately his decisions lead to me being on one of the most stigmatizing maintenance drug available. I take Methadone and while I am pleased with how even my pain control is, that there is a generic version available, and that my pain control is quite good I do wish I had asked to try something different first. When I see a new doctor or a doctor of mine has sent me to the ER I have had to explain that I don't go to the Methadone clinic and that I'm not a recovering heroin addict. While I greatly respect people in recovery, this adds one level of suspicion and stigma that I just don't need.
I've been using narcotic pain medication for over three years now. In that time I've switched primary care physicians. The change went very smoothly and with no hitches. I think the key was that I was honest and made it clear that I was completely dropping my old GP as soon as soon as my new doctor agreed to treat me. Overall, things seem to go smoothly as long as I disclose my pain medication along with my other medications and stay calm about them. If I disclose my breakthrough meds before my maintenance meds, there seems to be less concerned about my being an addict.
I have had some changes in my original plan. The acetaminophen was removed from my breakthrough medication to protect my liver. I've also had one dosage change. Dosage changes are inevitable but mine haven't been very close together by any means. When I first read about pain management I had the impression than I'd need my dosage upped every six months or so but that just hasn't been my experience. I can stay at the same dose for over two years before talking to my doctor about pain control.
I've mentioned two types of medication here: breakthrough and maintenance. I take my maintenance medication the same way I take my blood pressure medication. So, it is something I take every day no matter how I feel. The maintenance med drops my baseline pain level by about two points. I know that doesn't seem like much but it is enough to make a real difference in my life. When I have a spike in my pain level or I am about to do something that I expect to spike my pain level then I'll take breakthrough medication.
Pain management has not been a miracle for me. However, it has improved my quality of life. That's enough for me. No, I'm not pain free. That wouldn't be a reasonable goal for me. However, my pain is more manageable, I'm able to do more of the things I want to do, when I have an acute injury I can recognize it, and I'm more content overall. Being assertive and getting my pain managed really has been one of the best things I've ever done for myself.

Saturday, May 01, 2010

Proving I have EDS

CinderBridge asked in a comment to my last post about the the techniques I use to prove I have EDS. Since EDS is a recognized physical disorder sometimes I'll get more respect if I can prove I have it.
This doesn't come up often. Most doctors don't know what EDS is or think it is no big deal. For me, it could explain the majority of my health problems or it could only explain my joint laxity and I could still have CFS/ME or something else.
I was diagnosed with EDS by a rheumatologist. Occasionally I'll report that dx to another doctor but they won't believe me. The most recent reason was 'You don't look like someone with EDS". Um, can someone tell me what someone with EDS looks like?
The first things I did was 'the thumb trick.' This is an aspect of the Beighton Scale that can be done sitting down. Engodo demonstrates the thumb trick and explains the Scale in a video on YouTube. When I was trying to 'prove' my EDS to my Opthamologist this didn't work because he wasn't familiar with the scale.

What did work was mashing my upper ear. I also learned about this from Engodo.

The last thing I did was to remind my doctor that my sclera are blue. I'm having trouble finding a simple link to prove this but this is a great handout for your eye care doctor that lists eye complications in EDS and includes blue sclera.

Sunday, April 25, 2010

Appearance and Chronic Illness

In high school and college I really didn't care about being 'pretty'. At some point I wanted to be attractive or desirable to those I found interesting. However, overall my appearance really wasn't a big concern to me. I gradually learned that how I dressed and groomed changed how people treated me and I'd go through some effort for things like interviews. I had no real confidence about this so I had one or two stock interview outfits. However, there was a hint that hidden inside was a girly girl. In high school we had formal dinners and I can recall using these as an opportunity to wear something a bit fancy without the stress of a dance.

Gradually I got sicker and older. I tried to move into the world of work but never seemed to manage it. I bought the 'right clothes' and tried to get a 'professional' haircut and sometimes tried to wear makeup. Something I never had confidence with because my Mom didn't get it and figured that vision must be essential for good application. Plus, I went to a weird high school where boarding students just didn't seem to wear makeup. I did wear makeup for a bit in college but my first boyfriend hated how it tasted so I quickly stopped bothering. My hair never cooperated and gradually got thin due to medication which made it more frustrating so it never looked good.

Gradually I became frustrated with how I was treated by pretty much everyone. While no one ever told me 'you don't look sick' no one ever treated me like my complaints were valid either. This is about the time when I made a friend with severe depression that really changed her grooming. I noticed how I treated her differently when she was smelly and sloppily dressed. I'm not proud of this by any means and once I became aware of my behavior I made a real effort to change it. However, I knew that if I was doing this then other people probably were too.

Like many chronically ill people I don't have many spoons. I wasn't going to waste my spoons on dressing up or expend them quickly by wearing uncomfortable clothing. So, I wore a lot of sweats and t-shirts and wore my hair in a simple braid. I didn't really worry about if my clothes fit and usually didn't see the point in spending money on myself. Everyday life took too many spoons to do more than survive. It was almost impossible to find clothes that fit locally and I just didn't have the resources to order clothes and do anything other than accept what I got so I tended to err on the side of too big. I certainly wasn't going to buy makeup I didn't have much confidence in applying.

I really don't know what triggered the change. I'd lost a lot of weight due to my gallbladder problems and my clothes were getting dangerously too big. Since I had to get a new wardrobe anyway I decided to get clothes I felt good wearing and felt good about myself in.
Gradually I discovered that clothes that fit and are a bit nicer than sweats and a t-shirt weren't necessarily much more expensive or uncomfortable. Part of that is changes in what stores like Wal-mart carry and the current popularity of leggings.

Amazingly, I stand a bit taller and feel a bit better about myself when I wear slightly nicer things that aren't baggy. I don't know if it is the better posture or the nicer clothes but people seem to be treating me with more respect.

Another component has been hair and makeup. My hair has gotten long enough that a simple braid is getting unwieldily. Simple buns tend to look nice but are actually easy to do and easy on me. I've also started to wear makeup. Partly to address my coloring. I wanted to be able to pass as well if I wanted to.

The overall affect seems to be than now I appear less depressed. I look like I care about myself. Plus, it isn't just an act I do care about myself.

Another bonus is that I seem to be getting fewer questions about my mental health from medical personnel. My improved appearance could be part of that. So could my success at coming off of any medicine that could be seen as a psych med other than Topomax. At my dose it should be clear that I'm using it for migraines and not for PTSD or bipolar disorder. Another reason could be that I haven't seen any new doctors recently.

I wouldn't say that I have real confidence thanks to these changes. Faking it till I make it hasn't worked yet. I wouldn't even say I've created a believable illusion of self-esteem and confidence. But, if random people are treating me more decently and my doctors are taking me more seriously then I'll take it.

Wednesday, February 10, 2010


Mr. Wacky recently gifted me with iLife 09 because I love podcasts and YouTube. Now I have the option of getting more actively involved in these communities.Well, honestly, I need to work on commenting on podcasts at all but anything that will help with my painful shyness is a plus.
Tuesday was bad and I figured I was so embarrassed that I couldn't get much more mortified by making a video about it.

Okay, a fair number of 'ums' and some brain fog related glitches but wow I did better than I thought I could. I really need to remember that a think more clearly in bed than I do even on the sofa with my legs tucked up under me.

Sunday, February 07, 2010

Confusion and Memory Loss

Brain fog is a very common symptom for almost every chronic illness I've ever been diagnosed with. So, I've cried and felt 'stupid' but I've never questioned it. I fought back by trying to keep reading and writing even tho I believed I was horrible at it. Coping involved lists, expecting less of myself, and not putting myself in positions where I'd be essential in any way.
However, while reading the Migraines community on LiveJournal I came to realize that part of my problem could be medication side effects. Initially, I thought that my problems with language could be attributed to my migraine preventative and since the resulting communication nightmare was wrecking havoc on my marriage I decided to look up Topamax and consider coming off of it.
(I don't look up my medications online normally. Somehow I think this means that if I do have an adverse reaction at least I'll know it is real. Too many times I've been told that I'm not really having that side effect, I just think I am because I expect to after reading the drug info or am otherwise trying to sabotage things.)
Topamax had all of the side effects I was expecting plus confusion and memory loss. Hmm, coming off this might really be a good idea. But then, I looked up my other medications and found at least two more that could cause confusion. Great. It looked like my own medications could be causing the brain fog. Medications that affect my brain I can see causing 'brain fog' but my stomach medicine and NSAID?
I feel like I've caused my own problems. I just expected the brain fog and was so ashamed of it that I never mentioned it to a doctor. When I mentioned it to Mr. Wacky he tried to be reassuring and comforting which was the most loving thing he could do. However, he never suggested that I talk to my doctor either, partly because he just hasn't perceived my brain fog in the same way I have. (Unfortunately, the problems were so persistent that he came to believe I was being willfully obtuse.)
I'm tempted to give up on doctors and medication. Right now, it feels like they might be doing more harm than good. However, since I'm diabetic and have glaucoma there would be real consequences to this plan. Consequences that Mr. Wacky won't quietly put up with. He's not happy about my willingness to put up with daily migraines, non-functional fingers, and constant nausea and gall bladder pain but he will if I really think it is for the best. However, uncontrolled diabetes and glaucoma are not negotiable. 
Further complicating things is the matter of pain. The worse my pain is the foggier I am. Mr. Wacky confirms this. My overall pain is best managed with narcotics and Relafen. Both of which can cause confusion.
What am I to do? I wish I knew. I should talk to my GP and my neurologist but honestly I'm afraid to. Most of my fears are irrational but they're still real to me. I've made same med changes on my own and I don't know how my doctors will react to that. Plus, my brain fog tends to cause some 'false memories' and I'm afraid that yet again I'll be told that I belong on the psych ward. Worse, the doctor will think that but won't say it and my quality of care will be forever compromised.
My attitude sucks right now. I keep wishing that things could be 'easier.' Giving up may make things simpler but not easier and certainly not better. Right now, I just wish I had a clear way to measure my 'brain fog' so I could tell if the changes I'm making are helping. Why put up with abdominal pain if it isn't helping me?
People talk about being forgetful, not retaining what they read, and having problems with getting the right words out. However, no one seems to mention remembering things 'wrong' or having clear memories of things others tell you never happened. Am I alone in this? Are my fears that I'm 'crazy' justified?

Saturday, January 30, 2010

Income, Nutrition, Weight, and Spoons

If Only People Understood Nutrition is one of those posts that I adore that then gets me thinking. I adored it so much I shared it with friends, one of which wrote You wouldn't be fat if you just ate right! to express his agreement.

While I agree with what FatNutritionist has said I had a hard time applying it to myself. I've been very lucky, I have an income source that covers the basics if I'm careful. I hesitated to see how I could 'let' this apply to me since I'm able to pay the rent, utilities, and buy food other than ramen when nothing unexpected comes up.

Here's where the catch comes in. I'm chronically ill and so is Mr. Wacky. Many of the ways to eat frugally take more spoons. Most foods that don't take many spoons to prepare are expensive or unhealthy.

Most of the suggestions I read on the internet for treating various chronic health issues include dietary changes. Being on any type of diet with food restrictions tends to up the financial cost and spoon cost of food preparation. 

Often I hear that I wouldn't be sick if I ate better and I wouldn't be fat if I ate better plus I wouldn't be sick if I weren't fat. I've had people tell me that if I really wanted to get better I'd do whatever it took to change my diet. I tell them I put every resource I have into it and am told I'm just making excuses.
(My fun/entertainment budget is often used as 'proof' that I'm lying. I need something to take my mind off pain and to put fun into my life when I'm mostly housebound except for medical visits and errands. Mental Health is important too.)

I've looked up resources about frugality on the Internet. The funny thing is, many people who write about frugal living aren't actually living near, at, or below the poverty line. Or they have large families and can take advantage of economies of scale that just aren't feasible for a family of two. Sometimes, the ideas just don't apply to the resources available in your geographic area or just take too much energy for a chronically ill person to take advantage of.

My internet research hasn't been utterly useless.  Some ideas have been helpful such as couponing, buying in season, don't buy things just because they're on sale and you might use them, emphasize flavor over quantity while cooking, check dates and only buy what you will use before it goes bad, check the per unit price, use generics, think about travel costs before driving to get a good deal, use your pantry, use what you have before buying something, and store things properly.

I've learned some tricks over the years for cooking as well. Using our crock pot slow cooker has helped immensely because the prep work can be spaced out. Sit to do as much as possible. Mixing prepared and fresh items to maximize nutrition with as little work as possible. Look for recipes with a short ingredient list. Always keep in mind clean up and use liners for pans whenever possible. Leftovers make good breakfasts and lunches. Use a timer you can keep with you so you don't forget something in the kitchen.

I've basically given up on standard meal planning despite how much money it could save us. Instead, we buy a standard group of things with very little variety that can be combined in various low-energy ways because we just can't predict what will be an appropriate dinner any day. Unfortunately, this leaves us in quite a culinary rut.

Ideally I'd throw casseroles together on my 'good days' that can be kept in the freezer till needed. However, we don't have the storage space or tools for that and I haven't had a day that good in years.

When I spell it all out here, I see that I have additional barriers to good nutrition beyond my income. Knowing that someone like FatNutrionist ends up writing blog posts because people who can barely afford ramen and mac and cheese are getting told they could do better if they only tried right does help me to realize that no matter what I do someone is not going to think it is enough.

No one else is going to cut me any slack on this subject. I'll have to 'let' Fat Nutrionist's post apply to me because when I look at the big picture, it sure looks like it does.

Friday, January 08, 2010

Yay for my Adjustable Blanket Support

I've been having some trouble with my feet. This is worst at home, especially in bed.
The problems seem to be caused by my bedclothes and my house shoes. My toes get subluxated easily and my heels won't stay at the back of my shoes.
So far we've done a few things to try to help me. I've got new socks purchased in the sporting goods department that are a bit larger than my usual and more padded. I've tried on endless pairs of bedroom slippers but have yet to find a pair that will fit and prevent my feet from pushing forwards thus compressing my toes.
What has helped the most is my adjustable blanket support. By keeping most of the weight of the covers off my feet I'm more comfortable at night and can sleep with my legs in a more natural position so my hips are happier too.
If you are considering getting one there are a few things to think about. My mattress is about 15" deep and I wear a US size 9 1/2 women's shoe. Honestly, I don't have quite enough height to keep my feet completely vertical with nothing touching my toes. Also, the adjustment has to be done with pliers if there's any hope of it staying where you set it and I've still had the platform slide downwards if my PCA isn't careful or if I put too much weight on it. Also, I have a full sized bed and the support is designed for a twin so I have a limited space where it is 'safe' to put my feet.
While I do wish there was a different design available to me, I do think I got the best of what is on the market today. My feet don't get extra cold which is something I was really concerned about. I am waking up in less pain and don't necessarily need to reduce my toes every morning. All in all, good things. However, if anyone is considering redesigning the blanket support for today's bigger beds and thicker mattresses and would like some feedback please contact me.