Monday, March 28, 2011
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. ;)
Thursday, February 24, 2011
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.
Friday, November 26, 2010
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
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
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
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
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.