Opinionated Ramblings of a Wacky Wonky Weirdo

Spread Too Thin

2011-03-28T17:41:00.000-04:00

I'm a person of varied interests. Overall, I think that's a good thing. However, I just can't keep up with everything I'd like to.

Mailing lists used to make things a bit easier. Yes, getting 100s of messages a day was overwhelming but they all came to my email client and I could read and reply to them in one place. Eventually I got to a point where I didn't feel 'at home' in any of them and didn't feel like I was doing a bit of good to anyone else so I just unsubscribed from everything.

A few years passed and I realized how lonely I was and how in need of support I was so I went back to mailing lists. Most of them were gone or overtaken by spammers. The new thing was forums. Now I'm not 100% against forums but overall they don't work for me. I'm a member of several like AbleGamers, The Dysautonomia Connection, and City of Heroes. While most forums have a 'view unread posts' button that is helpful in keeping up. However that button only works if you go to the forum's website. Yeah, I'm lazy and forgetful. Some forums allow you to send certain threads to your RSS reader or subscribe to them using email. This is great for keeping up with something you're already aware of but doesn't work for learning about new threads.

The next thing was LiveJournal. In some ways this, and the similar InsaneJournal and Dreamwidth, is my favorite. I could keep up with both individuals and communities using a centralized Friends Page. Conversation wasn't real time but it was neatly threaded. My varied interests got me in over my head again. Plus LJ tends to be one of the habitats for dramaz llamaz. The way LJ is serving ads to free account holders has killed it for me for now and I've been away long enough that paying for account doesn't make sense. I haven't put the time and energy in to Dreamwith yet to really have an incentive to spend time there.

Speaking of RSS readers such as Google Reader or NetNewsWire they're amazing for keeping up with favorite websites such as blogs. The blogging community is wonderful and so it is easy to add blog after blog to a reader. 100s of feeds in a single topic can appear in your reader before you even know it. Yes, most individuals don't post more than once a day but my feed reader still reaches the point where I need to 'mark all as read' quickly.

There are also numerous social networking sites such as Twitter and Facebook. Now FB has groups that include forums but finding new activity is tricky so I don't use that feature as much as I'd like to. People talk a great deal on social networks and it is great but even with the help of something like Socialite or TweetDeck it can be hard to keep up with all of the conversations especially if you don't own a mobile device.

None of these things truly occur in real time. (Twitter comes the closest.) There really is something attractive about real-time communication. Be it using a virtual world like a Mult-User Dungeon (MUD) like the one I met Mr. Wacky on, a MMORPG like City of Heroes, or Second Life or simple real time chat like IRC, Skype, or instant messaging via something like AIM or GTalk. Even when I can't be loud enough to be heard over the phone or the phone is too much with my social anxiety I can still interact with people. I find that real-time interactions are more distracting from pain or whatever else is bothering me. I really have to ration real-time interactions because they take more energy. I frequently feel rushed during them and have a lot of trouble following more than one conversations at a time. Plus, for some reason I'm extra worried about screwing up socially.

Not to mention the new thing: Tumblr. (My calling it 'the new thing' probably shows how out of touch I really am.) It is so very easy to follow Tumblrs. They exist on a variety of topics from cupcakes, tiny things, Chronic Illness Cat, to fat guy fashion just to name a few. One great thing about Tumblr is how low energy it is. Just go through your Dashboard and click the little hearts on things you like

I personally don't have the time nor spoons to do more than just Twitter. There I still have more than 200 people I follow because I'm interested in EDS and CFS as well as size acceptance, fiber arts, etc etc etc. I'm interested in too many things to really do any one thing justice. No matter how hard I've tried to have fewer interests I've failed. (Although my body has been trying to take fiber off the table.)

I've been told it is better to do one thing well than many things in a casual way. Overall, I believe that. I've found that varied interests help me. I can't just talk about being sick - it gets too overwhelming. I can't just talk about size positivity and fashion - it can make me sad or encourage me to spend money and it doesn't provide support about being sick. I enjoy video games but they take physical and emotional energy and again don't serve as a source of support about chronic illness or body image.

Do I have an answer? No. Do I think a solution exists? Not really. Is that okay? I'll figure it out. So am I just complaining? Yes and that's another post I need to write. ;)

EDS and Vision Rehabilitation

2011-02-24T19:07:00.000-05:00

I'm not an expert in blindness rehab or Ehlers-Danlos Syndrome. These are just my thoughts and experiences as someone who has been both legally blind and bendy since birth. When I did vision rehab I wasn't diagnosed with EDS so no one knew why I was having so much trouble with many of the skills I was trying to learn. Since eye problems are not unheard of in EDS and are common in Kyphoscoliosis type I thought this might be useful to someone.

First thing is that most people with EDS have bad proprioception. So, you put a person who has trouble sensing where their body is in space in sleep shades and that gets even worse. For me, that means that no matter how hard I tried I kept crossing streets slightly diagonally under shades. Walking faster is supposed to make it easier to walk in a straight line when under shades but it just didn't help me and I felt so unsteady that I couldn't manage it.

Also, unstable joints mean that muscle memory doesn't work well for travel. What I mean by this is that stride length will vary and so the number of steps it takes to get somewhere won't be consistent. This mainly applies to indoor travel. For me, I still have trouble walking through the living room in the home I've lived in for almost 8 years. I often use the pre-cane technique of wall-walking that I learned as a child. (I do need to be careful doing that outdoors because I will quickly strip the skin off my hand following a rough wall surface.)

Those unsteady joints also mean that asking for a seat on public transit can be appropriate for blind/vi people with EDS. The movements of a bus or subway can be more than a bendy body can adapt to without falling. Also using the elevator instead of the stairs or escalator may also be the right choice especially when it's crowded and/or when going down. (Going down is harder than going up according to one of my physical therapists.)

Using a cane can be a bit tricky. Encountering an obstacle can lead to a wrist subluxation or dislocation. I had to use a very light carbon fiber cane and couldn't manage to tap it, I just fatigued too quickly and couldn't always maintain the right rhythm. Sometimes a telescoping cane would collapse before my wrist but I wouldn't recommend one for extensive travel. A loose enough grip to avoid injury would sometimes mean I'd drop my cane and finding it could be hard.

Poor proprioception can also extend to the larger space around us. An unscientific poll has lead to me to conclude that even fully sighted people with EDS tend to get lost easily and have no sense of direction. Becoming blind probably won't magically fix that regardless of how hard one works in Orientation and Mobility.

Using a support cane can help with the unsteadiness if the wrist can handle it. However, I never managed the coordination required to use both simultaneously. Eventually an O&M instructor told me that while my travel skills were fine I didn't walk well enough to cross city streets and so paratransit would be appropriate for me.

I'm very grateful to her. She was one of the first O&M instructions who worked with my status quo and didn't focus on 'but there's no reason you aren't walking normally and I'm going to push you till you are.'

Eventually some people with EDS will need to learn O&M skills that are appropriate for crutch and/or wheelchair users.

The poor proprioception also means that holding things level can be almost impossible. This will mostly come up in the kitchen but also with buffet lines and eating. Some of this may come from instability in the arm joints but regardless of the cause it's there.

For ADLs, from casual observance hand tremor is not uncommon in people with EDS, myself included. This complicates reading braille and many kitchen tasks. I was never coordinated enough to manage two handed reading. Plus, repeated dislocations have lead to nerve damage in my hands.

Many people with EDS have symptoms of dysautonomia. Symptoms vary but functionally they include dizziness, fainting or near fainting, nausea, heat intolerance, and fatigue. So intensive rehabilitation programs might not be appropriate.

This is by no means an extensive list of all the ways EDS can impact the things done during rehab. Every program is a bit different. I feel like I've painted a bleak picture but I'm still glad overall that I invested time and energy in improving my skills. At first glance I'm a pretty crummy blind person, I know that. But without vision rehab I think it would be even worse.

CGR or “Can't Get Respect”

2010-11-26T11:56:00.000-05:00

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.

Having one disability is not an insurance policy

2010-09-17T16:27:00.000-04:00

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.

Thoughts on Death and Online Friends

2010-08-13T16:36:00.000-04:00

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?

Occupational Therapy

2010-07-04T02:58:00.000-04:00

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.

How I got my Med Contract

2010-06-18T17:00:00.001-04:00

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.

Proving I have EDS

2010-05-01T16:27:00.000-04:00

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.

Appearance and Chronic Illness

2010-04-25T22:02:00.000-04:00

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.

Tuesday

2010-02-10T15:50:00.000-05:00

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.

Confusion and Memory Loss

2010-02-07T16:48:00.000-05:00

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?

Income, Nutrition, Weight, and Spoons

2010-01-30T21:54:00.001-05:00

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.

Yay for my Adjustable Blanket Support

2010-01-08T16:45:00.000-05:00

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.

Me and relaxation

2009-12-22T17:50:00.000-05:00

I’ve been meaning to write about how I have mixed feelings about relaxation and stress. Stress isn’t good based on current medical understanding. However, a lot of the stress relief/management techniques I’ve seen at least touch on muscle relaxation.
Part of how I finally figured out that I needed to be checked for EDS was that Mr. Wacky was working with me to help me understand what the doctors wanted when they said “relax your ”. I would get my arm or whatnot into a comfortable position but the doctors would be frustrated. Mr. Wacky worked with me until the muscles in my arm actually relaxed and what happened? I asked him “How is this relaxing honey? It hurts. I feel like my arm is pulling apart.” One subluxated shoulder and elbow later we decided it was time to do some hypermobility research.
I’ve tried meditation but I can’t stay awake. What seems to happen is that my obstructive sleep apnea kicks in and my airway collapses. When I talked to the therapist who taught me meditation I was told my falling asleep was a ‘therapy interfering behavior.’ Yes, she did know about my sleep apnea. I got very frustrated with myself feeling that I was subconsciously sabotaging my efforts. Combine this with not feeling much better physically (and in some ways worse) and I almost quit the class. Luckily I didn’t and more active meditations were the topic of the last few classes and I was much more successful with those. However, after a pleasant meditation session on the treadmill I would feel mentally better but physically awful. Originally I attributed that to the aftereffects of the exercise but the problem continued as I started to practice mindfulness more broadly.
I didn’t clue into the real reason for my mixed feelings about meditation and other relaxation techniques until I started to pay attention to how I felt after I used Flexaril. Like many people with fibromyalgia I don’t sleep well. Often I take a medicine to help me sleep and they quickly stop working for me so I’ve tried many. A few months ago the Benadryl I had been using to help put me to sleep and stay that way stopped working so I pulled out the Flexaril. It is a muscle relaxer that tends to be used be help people sleep. Well, initially I’d get about 12 good hours of sleep but for the next three days I’d scream in pain every time I moved and Mr. Wacky would come to me and put whatever joint fell out back in place. I’m not always the sharpest crayon in the box and it took me about five doses until I figured out what was going on.
So at this point I know that having relaxed muscles means that my EDS is more likely to act up. This really could explain why I honestly don’t like most physical relaxation exercises. Why do something that is neither fun nor good for me? While relaxation would seem good long term I think the short term increase in pain and the long term joint damage counteracts that.
This got me to pay more attention in general. I’ve had some very pleasant times recently and thus have been content and naturally relaxed. After a good night’s sleep with or without medicine I’d often be in a lot of pain. I’d thought it was from being so still but if I’d wake up in the middle of the night to roll over I’d often pop a shoulder out if I didn’t do it carefully. The biggest problem has been my toes, each morning I have to tug them back into place. All I can figure is that my muscles are relaxed in my sleep and so my joints are especially lax.
I’ve taken to making a nest of sorts for myself out of pillows. I’m surrounded on all sides and can’t easily move. This has forced me to wake up more fully if I want or need to change positions but I’m waking up in less pain overall. So, in theory I should now be safe at night now, right? WRONG! Last night I woke up with a band of pain in my right foot across the base of my toes. I couldn’t yell loud enough to get Mr. Wacky’s attention and somehow couldn’t even bring myself to try to put all the toes back in place myself. So I got out of bed and walked towards him until I got his attention. As I sobbed and apologized for bothering him he quickly and quietly tugged until I cried ‘Uncle’ and begged him to give up. Luckily by then he’d done enough that the pain started to ease although neither of us felt any pops. What happened? The weight of my blankets and comforter had pushed my toes back towards my body as I slept. *facepalm* I’m not even ‘safe’ in my own bed surrounded by my nest of pillows. I may have to get one of those contraptions for people with nerve damage in their feet to keep the covers from touching them. That just sounds like it will lead to chilly feet.
I’m almost scared to get too relaxed now. Well, the consequences of relaxation seem to undo relaxation rather quickly. I’m known for being wound rather tight and apparently this has served me well in terms of EDS. However, I don’t want to stay an anxious mess the rest of my life nor do I want to craft splints out of cardboard and duct tape out of desperation for every joint in my body. How do I relax my mind and spirit without relaxing my muscles? An ever better option would be to relax overall and still keep my joints in place.

Ehlers-Danlos Syndrome and misrepresentation

2009-12-07T21:58:00.000-05:00

I've sort of stepped back in my interactions with the chronic illness community in recent weeks because my primary diagnosis has changed. I feel like a fraud.
For about ten years I've believed that I've had something similar to Lupus and to save a lot of explaining I just said I did. I've been diagnosed with RA and UCTD (Undifferentiated Connective Tissue Disease) in the past.
At a visit with a rheumatologist I was recently told that my previous diagnoses were all incorrect. The doctor explained that my blood work should have more significant abnormalities by now if something was seriously wrong with me. Somehow my body just has a tendency towards unusually high white counts and a consistently high sed rate and other inflammatory markers but all that is meaningless.
So, according to him all I have is Fibromyalgia and he's never had a patient not get better who's actively done what they've been told. Well, I needed a topic change at this point so I asked him about my joints and was diagnosed with Elhers-Danlos Syndrome, hypermobility type aka type 3. According to him the EDS is a trivial thing with little if any bearing on my health.
Well, I won't be seeing that doctor ever again but he has done me a favor. Based on my research EDS isn't as trivial as he made it out to be and could very well explain a lot of my health problems.
Unfortunately, I'm the only one in my family with an EDS dx and my parents don't want to investigate the matter. Without a family history my GP won't do further testing to check me for the vascular type, type 4. That I have no family history of type 3 but still have that doesn't seem to change her mind.

I'm thrilled that I might have an answer to all the little problems. From the jaw that would lock and I've have to tug back into place from the time I was 8. To the hips that get all 'wrong' that I need help to fix so I can walk again.
That just makes it feel even worse that I've misrepresented myself all these years. No, I didn't do it on purpose. Yes, people do get new diagnoses on a regular basis. However, it doesn't seem like people are told they've been wrong for ten years all that often. It doesn't help that I didn't explain that I didn't have a firm Lupus diagnosis. I didn't even tend to add the ANA negative part all that often.
I could just slink away from all the friends I've made over the past ten years but I don't want to do that. I've meet really nice people who I can still relate to about being ill and all sorts of other things. I'm finally meeting people who are both sick and share some of my other interests like knitting, WoW, makeup, and having a dirty mind. I really don't want to start all over again. However, I do want to meet more people with EDS.

So, I'm 'fessing up. I don't have Lupus. If that doc is right, I don't have any type of auto-immune disorder. However, I'm not going to run away in shame for misrepresenting myself either. Mr. Wacky says that I haven't really misrepresented myself and that no one relates their diagnoses word for word but I'm having trouble believing him. (Plus, he's biased ;)

Blogging Against Disablism Day

2009-06-18T02:59:00.001-04:00

I have both a congenital sensory impairment (legal blindness) and a chronic illness (fibromyalgia and CFS/ME/CFIDS).
Frequently, both communities are grouped together since both things can be considered 'disabilities' however, their needs and concerns are different. I'm honestly not sure how effective this is and I'm not sure how well each group can understand the other.
Honestly, it is in the best interest of those with congenital and acquired physical/sensory impairments to promote the image that they can do almost anything with the right, usually minor, adjustment. (Such as a ramp, reader, etc.) The emphasis is on how basically capable this group is as a whole and that's how it should be.
I realize that physical/sensory disability can be associated with chronic health problems. Many people with spinal cord injuries have chronic pain for example. Plus, health problems can lead to disability.
Chronic Illness seems so different. Yes, it may require similar use of aids & appliances and the need for personal care attendants. However, I'm not sure how well the two fit together.
Personally, once I learned 'how to be blind' I pretty much had it figured out. I got the 'blindness skill toolbox' if you will and was able to go on with my life. If an obstacle came up, I usually even had an idea of what would help eliminate it. The support I needed was mostly about society and how to change it.
Then my fibromyaliga and CFS/ME/CFIDS kicked into full gear. Things became unpredicitable. Yes, I needed to learn a new set of tools but that box will never be static. My enemy is now multifold: my body, society, my doctor, and minute aspects of the environment around me.
One example is attendant care. A person with a disability may need attendant care to be able to go out into the community. They are frequently housebound without attendant care but once they have appropriate attendant care many things become possible including working. For a person with a chronic illness, attendant care won't necessarily enable someone to go out into the community or any other quality of life enhancement. Sometimes all it will do is help slow the rate of degeneration.

As for public appearances, I'm pretty sure that when I get out of my snazzy red wheelchair and take a few steps to my seat I'm doing a dis-service to another young person because it spreads the idea that maybe the next person who comes by will be able to do the same thing. Or when I use my chair on Monday but not on Thursday someone will get the idea that I was 'cured.' Should I not do what I can because it may somehow harm the public image of other people with disabilities?
I am usually pushed by Mr. Wacky. If I'm sick enough to need to be in my chair, I'm not well enough to push myself long distances. However, I doubt many people without a chronic illness would want to be pushed.
People with static disabilities want to present themselves as basically functional and competent.
People with chronic illnesses seem to want and need different things depending on the nature of their exact illness. Overall, they seem to want to be believed to be truly physically sick and to be believed about their current level of ability at that moment. Instead of struggling to be seen as more capable than they appear, the struggle actually seems to be the opposite.
While there is strength in numbers and collations are very effective in matters of civil rights, I'm just not sure that grouping disability with chronic illness is the most effective thing for both groups long term.

I will never see the ocean or ocean floor the same way again...

2009-03-17T19:04:00.001-04:00

So, People for the Ethical Treatment of Animals has a new Sea Kitten campaign. (It is real.) I learned about this on Twitter but I can't remember from whom.
The site is cute. It feels like a lot of the sites I've seen aimed at children with bedtime stories and make your own sea kittens. Great, just great, misinform children about fish.
One of the stories featured a tuna who wanted to play with her friends. News flash PETA, Tuna are predators. So, yes that Tuna is probably having a whole lot of fun but I'm not sure her 'friends' are.
However, my last straw came when I was playing with the 'make your own sea kitten' feature. My tuna was dressed with lipstick, a leather jacket, and a mohawk before I noticed the optional litter box for me to place in the scene. Fish, oh pardon me, 'Sea Kittens' aren't known for bowel and bladder control, they eliminate in the water that surrounds them and any heavy stuff falls to the ocean floor. (Okay okay, I didn't look this up. I'm guessing.) So, hasn't PETA made the ocean and the ocean floor and any other body of water containing fish out to be one giant litter box for their precious 'Sea Kittens'? Why should anyone want to care about a litter box no matter how cute the things that use it are?
PETA wanted to get a new public relations firm for fish but I think they've really done a disservice to the public image of the homes of the sea kittens.
But, this talk aside, who approved this campaign? Was it submitted seriously? I half wonder if it was submitted to PETA as a covert attempt to undermine them from the inside. Well, I hope that's what happened but I doubt it is what happened and that makes me sad.

My, you've lost weight

2009-01-04T10:50:00.001-05:00

In 2008 I lost about 16% of my body weight. The changes to my body have been noticeable but what has impressed me more has been how other people have responded to the changes in my body.
I have a standing weekly appointment to exercise in order to maintain my ability to walk and do other basic ‘activities of daily living.’ For a time. when I arrived I’d be told how good I looked because of how much weight I was losing. This scared me. Yes, I was exercising but I’ve been doing this with these same people for 2 years so the weight loss was a definite change not due to the exercise. No one bothered to ask me what was up.
I almost stopped exercising due to the constant focus on the size of my middle while I was busy trying not to throw up. I felt objectified and noticed only for the size and shape of my body.
I doubt I really looked good. People who saw me from the neck up, seated, or for the first time would comment on how poor my color was or how I wasn’t behaving normally.
Whenever I would express concern about my weight loss I felt brushed off. I was not trying to lose weight. No matter how fat I am or was initially, losing weight without knowing why is a real cause for concern. In my case, I was eventually diagnosed with gallstones that were causing chronic nausea and abdominal pain. You see, I was probably losing so much weight because I was too sick to eat and to process what I could eat. This lead to malnutrition.
The results of the weight loss may have been good for me but this has been expensive. I am not someone who can easily afford new clothing and I don’t own a sewing machine. Luckily, a kind relative donated clothing to me. I wouldn’t necessarily call myself prideful but I do care a little bit about how I look and know enough to be aware that wearing clothing that is 6 sizes too big is not only potentially embarrassing but isn’t going to help my image problems one little bit.

MMO update

2008-12-17T13:09:00.001-05:00

WoW has done a few things that annoyed Mr. Wacky so he and I investigated other MMO options. What we found was EVE Online.
Mr. Wacky really likes it. I am able to barely play.
In other words, I can do mining and industry. Combat is quite difficult even in a fleet.
The mission system is inflexible in my opinion and due to that I tend to avoid missions. Almost every Level 1 Agent type has the possibility of giving you combat missions. Turning down or abandoning missions negatively affects standings. Because of this, I tend not to avoid missions completely.
Avoiding missions means one doesn't gain standings or loyalty points so that it is harder to get good gear and your refining efficiency won't be as good.
With all of these problems, I still put up with playing. Mr. Wacky isn't playing WoW at present so if I want to do something with Mr. Wacky I have to play EVE. Unfortunately, it doesn't feel as cooperative or close but it will have to do.
EVE might be a good option for a high partial with better use of their vision than I have.
One reason that WoW works for me is addons. EVE does not allow for them and as such I don't have a lot of hope that the situation will ever change.

Hiding my opinions

2008-12-14T21:20:00.001-05:00

I have opinions but I hardly ever share them.
Mr. Wacky gets to hear them all because I trust that I won't lose him over a difference of opinion. Plus, he and I have worked out ways to have respectful conversations about politics and other 'heated' topics.
I don't make friends or even acquaintances easily so I'm loathe to possibly lose someone over something like an opinion. After all, everyone has them and most people firmly believe that their opinion is the 'best', the most well researched and well founded one there is.
A problem comes in when I feel that I am misrepresenting myself. Lies of omission. I don't state that I agree with the discussion at hand but I don't state that I disagree either. Experience has taught me that many people interpret silence as tacit agreement rather than as 'if I can't say anything nice, I won't say anything at all.'
I don't intend that to mean I want to be rude to others about their opinions. Rather, I'm afraid that I might offend. I know full well that my opinions aren't usually mainstream and are sometimes quite harsh.
While I think I have good reasons to hold the beliefs and opinions that I do, I don't want to be obnoxious about them. So, I'll listen to another point of view and consider it carefully. If I wasn't willing to do that, I'd still have the same opinions I did at 18. If asked about my reasons, I'll do my best to state them. However, I don't tend to volunteer the information.
I think I come across as someone who doesn't ever think about things. I do, far too much even. I just don't want to lose friends or potential friends over my thoughts. That's one reason almost no one knows about this blog. I thought that by not telling anyone about it I'd feel safe to write in it. I guess my plan needs more work. Especially since I'd like some people in my life other than Mr. Wacky I can talk to about concepts and ideas.

Starting World of Warcraft

2008-08-01T19:41:00.002-04:00

One of my few rules for my SO about gaming had been “Anything as long as there isn’t a monthly fee.” Gaming is the main activity that my SO does to relax. While he can play the same game over and over again, he does get bored eventually. At which point, a new game or at least new material is in order. Also, we both mostly socialize online and I didn’t want to do anything that might discourage that for either of us.
While I’m embarrassed to admit this, I was jealous of the ‘square headed girlfriend.’ I didn’t want him to stop gaming per se. I just wanted to spend some time with him. Sitting on his bed knitting as he played immersive games didn’t give me a sense of connection.
My vision hasn’t always been good enough to allow me to play computer games. Eventually I just stopped trying. One of the first things my SO bought me after I recovered from cataract surgery was a PlayStation2. I’ve played The Bard’s Tale with glee. Rampage: Total Destruction annoys me but I still love destroying major cities. And Final Fantasy X has been wonderful but I’m no where near done the game. However, we quickly discovered that he and I couldn’t use the PS2 together. If I was positioned so I could see the screen then he couldn’t and vice versa. In a competition, my SO would always win as he has far superior vision and usually better hand function. Using the PS2 together was more an exercise in frustration than a friendly bonding experience.
Around this time I found a series on TV called Rise of the Video Game. My SO and I watched this series together and had a lot of fun talking about it as we watched. Due to our age difference and my blindness, he’d experienced a lot of things that I hadn’t. One of the last games featured was World of Warcraft and we were amazed at how it looked on the screen. The discussion of the game’s popularity with gamers with disabilities and chronic illnesses was also appealing and gave me hope that even I might be able to play.
Initially I tried to find a free MMORPG that would work on both PC and Mac. I had switched from a PC to a Mac when Tiger came out so that I could get my screen access software included with my operating system. Being a multiple OS household means that what works on one machine doesn’t necessarily work on another. My research lead to Second Life which was quickly discarded as inviable. So the search began for something that would work for both of us, as that was the entire point. WoW seemed to be our only option.
We had a serious talk about gaming and money and decided that it might be worth giving WoW a try if it was to become our primary game. We looked at what we were spending on new and used games, guides, and expansions and realized that it wasn’t an insignificant amount. Taking up WoW would mean no buying $10 games, used games, or downloading expansions/modules for already owned games that weren’t free without talking about it. We got the 15 day demo and emailed the one friend we knew who played WoW. He was thrilled and quickly replied with a wealth of help. Eight months later this friend is still amazingly helpful, we’re still playing WoW, and neither of us has spent money on gaming that wasn’t WoW related. (This was a smart financial decision for us.)
I didn’t find a lot of information online about playing WoW with a visual impairment. I may write some posts about it myself. So, I had to figure it out on my own. Addon free, it was rather hard and I’m surprised I stuck with it. I was lucky in that my first interaction with an experienced player who I didn’t know was amazingly positive. I give that player a lot of credit for my staying with the game. My first toon has long since been deleted but I’ve stuck with things partly due to the kindness of others and my own stubbornness.
Once I got my act in gear and made my troll priest I began to work with my SO. He had already taken the time to figure out how the game worked and get used to the mechanics so that he could focus on helping me. Wow. It was amazing to work cooperatively with him on something without fighting over a monitor. While he did know more than I did, we were both getting to explore together and there were things that I was able to learn and pass onto him. Our different play styles and abilities aren’t a disadvantage with cooperative play.
Initially, I didn’t want to play on my own. But, my SO and I have radically different sleep schedules and we each began to play during lonely awake hours. I’m advancing much more slowly than he is, but we have a rule “Don’t compare yourself to sighted players.” I’ve spent time helping his toons level which is one of the few times I ever feel helpful. Gradually I’ve even learned to ask for help when I get stuck. So WoW has helped me as a person and has improved our relationship as well.

Male Bashing

2008-07-25T22:00:00.001-04:00

I try to keep my politics to myself when out in public or online. This is my blog and I’m going to vent as I’m saddened and angered by many attitudes I’ve seen expressed about men recently.
I admit to not actually thinking much about my politics until recently. Sitting around with my friends and bashing the currently ‘safe’ to bash group was a common activity. I really didn’t think about what I was saying. I was bashing a group of people and easily forgot that groups are made up of individuals. These individuals are people, just like me and my friends.
The group I currently see bashed is men. Approximately half of the population is male. This is a group that you don’t choose to join. Amazingly, most people know at least one male personally. It’s not as if the majority of the population has never had an opportunity to know a member of this group as an individual.
People speak about men in the same ways they talk about convicted murders or children. What’s more, if people spoke about women, gays/lesbians, or almost any other group in the same ways that people speak about men there would be some sort of outcry.
I’ve seen this behavior from straight people, queers, men, women, young, old, people who have males in their lives they love and respect, and those who have had negative personal experiences with males.
Beyond general negative comments about men I’ve seen negativity about specific men.
SO bashing is common when people get together. Yes, sometimes it’s about things SOs have done or said recently. I do see the value of venting.
However, I see a real difference between venting about behaviors and casually threatening violence against someone you supposedly love. I doubt that most people would excuse men talking about killing their wives.
Why are men held to a different standard than women? I honestly don’t understand. I feel stupid and naive for ever calling myself a feminist. Why did I ever believe that it was about equal rights? In fact, often I’m ashamed to be female.
People deserve a baseline level of respect. Especially from their Significant Others.

Plurk and Shyness

2008-07-13T20:17:00.001-04:00

I’m shy. Part of it is a lack of social confidence and a low tolerance for social frustration. However, I find myself interacting with others on Plurk. Why is that? It is not as if those interactions are not fraught with anxiety for me.
I had hoped that the internet would be my key to socialization. I’ve tried mailing lists, LiveJournal, social/support MUDs, forums, online games, blogging, instant messaging, etc. I can’t claim that all of the above have been utter failures. (I did meet my SO after all.) However, each has seemed flawed and I’ve fallen into lurk mode easily.
High volume gets me quickly. I hate feeling ‘out of the loop.’ I got enough of that irl. Plus, I’m obsessive enough to have trouble deleting things without at least a reason such as that subject line doesn’t interest me. With mailing lists and forums I learned quickly that the subject line rarely remained relevant for long. Mailing lists became easier when my email client gained the ability to thread messages by subject. However, I’ve still left the majority of mailing lists I’ve ever been on.
I have trouble inserting myself into an established group. This a problem in any social situation. I always assume that I must have something of merit to add to a group to earn acceptance. However, I assume that I have nothing of value to add to the group so I don’t try. I don’t want to have my first interaction be asking for help or advice but I rarely feel I have good suggestions to offer. Plus, I haven’t yet proven to a new group that there is any reason that I might have good suggestions.
Social/support MUDs worked for me for quite some time. The ones I used were topical which had a huge advantage for me of giving me a topic that was probably ‘safe.’ As I became older, I wanted to be more multi-faceted. I realized that I needed to be more balanced. As a result I needed to pull away from my only social resource.
LiveJournal eventually took the place of my safe Mud. I even followed most of the same people. I enjoyed the variety of topics that I could get sucked into and the ease of reading my friends page that I could easily filter. I gradually became overwhelmed and backed away from LJ. Part of it was the stupid things Six Apart did but not all of it. I don’t really use my new InsaneJournal account.
The isolation finally got to me and I tried forums. No go there either. On a purely functional level, I could hardly ever get the ‘find new posts’ feature to work on any board type even when I was careful to close the tab when done and avoid using my back button.
The forums on Ravelry are unique and I want to like them. That statement implies I don’t, huh? I honestly can’t put my finger on why. I need to expend more mental effort to learn how to use the system.
Along comes Plurk and I find myself spending hours on the site. Why?
I suspect it is that I convince myself that I can’t screw up too badly in 140 characters. Looking at PostSecret, my guess is that most secrets are less than 140 characters so I’m positive that is a delusion. However, 140 characters is within my brain’s editing limit so most of my plurks have a decent chance at being semi-coherent.
Plurk threads comments and their replies which I find far superior to Twitter. I love the little mini-conversations. Even better I’m able to mute conversations that I’m bored with or I find upsetting. This is a key reason that I’ve kept using the site, it’s so easy to avoid things. However the mute feature does break on occasion.
Also, the Karma system lets me tell myself that even if the other person hates me, I’m still helping their karma by attempting to reply to their plurk. I’ve made a conscious decision to be nonchalant about my own karma. I do get replies to my plurks on occasion but my casual attitude about karma is helping me not be too obsessed about watching for replies. Instead I just get to be pleasantly surprised.
What does concern me is that people might not un-friend me due to the karma system. No, I don’t want to drive people away but I don’t want people to keep me as a friend because they don’t want to hurt my karma. Normally I’d try to convince myself that this is a baseless fear but I’m read threads about just this.
I’m not sure how long I’ll stick with Plurk. I could get overwhelmed and quit at any time. However, Plurk had a steep learning curve for me and I’m shocked that I put up with it.

Henhouse Intro

2008-07-06T00:46:00.004-04:00

My first project for The Plurkette Hencircle is the ever so evil introduction.
Joining is an odd endeavor for me. Plurk causes me to be oddly social, hopefully not regrettably so.
I call myself a homemaker because it's simpler to say than than to say 'I'm too sick to work." I really don't have the skills to go with the title.
A tidy and clean home helps me feel content and safe. While I've read a lot about how to create the kind of home I want, I just haven't put it into practice. Part of that is budget but most of it is spoons.
The goals for my inner farmgirl need to be tempered with reason. I'd like to cook more and learn to enjoy it the way I did when I was young. Container gardening has been tempting me for years if I can find a way to improve my diet that doesn't compromise my budget nor my health. Learning to do more than sew on a button and mend a minor tear would be so helpful in getting my wardrobe to work for me better. Doing more cleaning and organizing would make he happier and healthier if I don't overdo it.
Fiber is my hobby, my stress relief, as well as therapy for my hands. It's a small thing I can do for others that helps me feel a little better about myself. I recieve so much from others, I just want to give back a fraction.
That ties into the concept of 'farmgirl' for me. I want to do what I reasonably can to create a warm environment in my home. I want to take care of myself, my home, and my SO to the best of my actual and not imagined abilities. It will never be much. That's okay. But, maybe I can come to enjoy what little I can do. Plus, if I find efficient ways of doing it, I can do more.

Remaining Childfree

2007-05-10T12:53:00.000-04:00

My partner and I are childfree. Initially this was due to necessity but now it is also a choice.
Both of us are probably infertile but I don't want to explain this to everyone I know especially as this will most likely result in unwanted sympathy. Even if it was possible for me to have a biological child or to adopt one, I would still choose to remain childfree.
Most of my decison is health related. I'm not the healthiest person and I have no idea how much of that might be genetic. I've been lucky enough to find a loving partner but that doesn't mean that passing on my genes is the right thing to do. For me, that's part of being responsible. This is a personal choice that is right for me and I don't expect others to make the same choice. I couldn't cope with the guilt if I somehow gave a child any of my chronic illnesses. If I was only thinking about passing on my blindness my decisions might be different. My life is valuable and I'm glad that I and other people with disablities and chronic illnesses exist. With that said, I wouldn't give this to someone I love. Even if my child would only carry my poor genes without being negatively affected by them I still feel like I should do my part to remove my genes from the gene pool in the future. This choice is called genetic-suicide by some and I can see why; however, not every gene leads to wonderful things.
Adoption would circumvent the genetics concerns. However, I don't have the monetary or physical resources to take great care of myself so how would I take good care of a child? The mental health of my child would be more important to me than physical health. If I honestly assess myself, I have to say that I don't think that I could give a child a stable enough home life.
Some would say that I'm doing the right thing and that I have no buisness even considering having children. Others might say that I'm selfish because I'm putting myself first. (In my book, I need to put myself first to be able to do anything else.) Overall, I wish I didn't care what others think. I this this should be a decision between the intended parents and it would be best to ignore outside pressures as much as possible. That said, it's really hard to tell my own Mom that I not only can't give her grandchildren but I also choose not to.

Accessible voting versus secure voting

2006-11-07T18:05:00.001-05:00

At one point I was an advocate of accessible voting. The more my
partner reads to me, the more I am ashamed to be connected to push
for electronic voting machines.
I may be unique in this view, but I'd rather not be able to vote
independently rather than open up the voting process to hacking.
I have the option of voting absentee and getting a trusted friend to
help me vote if I'm worried that I won't like the help available at
the voting booth. I have heard concerns that these absentee ballots
won't be filled out according to the voter's wishes. Someone in that
situation needs help to get into a healthier one.
While I don't really like needing help to complete a ballot and am
worried that it may not be filled in incorrectly I am far more
uncomfortable with the fact that using electronic accessible voting
machines may make it easier for someone to modify my and others votes
later.

Information, lots and lots of information

2006-09-19T16:40:00.001-04:00

I listen to quite a few podcasts. I feel chronically behind in my
podcast listening.
Part of the problem is how eclectic my interests are. Perhaps if I
only listened to knitting podcasts I wouldn't feel so overwhelmed by
the amount of information available to me each day.
I have a selection of freeware RSS readers for Mac OS on my system.
While I'm interested in using one, the process of setting one up is
rather daunting.
I also subscribe to several email lists. Do I read them? Hardly ever.
I do seem to take in audio information far more readily than visual
information. I don't think that warrants a judgement call. However,
there is a great deal of information out there that I can only access
in a textual form. Yes, I have the option of using text-to-speech to
access textual information. However, I haven't figured out how to
listen to two things at once and take anything substantial from either.
That said, if I try to read something and listen to something at the
same time, I really feel that I do both a disservice.
There is so much information available to me. I'd like to be able to
take as much of it in as possible. Doing things in a half-assed way
just doesn't appeal to me.
If I take in too much information, then I can't process what I take
in. What good is taking in information if I don't think about it?

my reasons...

2006-09-18T02:05:00.000-04:00

I spend a great deal of time by myself. To avoid boredom I watch a great deal of TV and listen to quite a few podcasts.
Being a rather opinionated person, I have a lot to say about the things I take in every day. Sometimes far more than my partner really wants to hear.
My hope for this blog is to be able to have a place to share my thoughts and opinions.
I'm not opposed to dialog so please feel free to comment.