morgandawn: (Lavender Field Here Now)
I am terrified and overwhelmed about the state of our nation, by the hate crimes, the loss of civil liberties, the cruelty and the dismantling of our democracy.  I feel powerless and small. I am disabled, the main provider and caretaker for my 80+ year old mother, and I have health issues that are starting to spiral out of control.

But I cannot not act. My plan is to do one thing every week. We will budget one hour each weekend to calling and writing our local reps, sending messages of support to fan friends and family, reading and learning about what is happening around us.  I want to make speaking out as much as part of me as my love for Star Trek and fan-vidding and fandom history.

I have a physical therapy routine that I must do every day of life. It is hard and discouraging because it can never counteract or fix or cure my physical decline. It hurts  every day and on some days it triggers vertigo and cognitive problems.  My rational mind  knows why I have to do the exercises but my heart sometimes wants to just lie down and stop. But eventually I have to get up because...well let's be real, I have to pee. And maybe eat something.  Turns out not peeing is not an option as long as you are still breathing.  

In other words, it took a while, but yesterday something clicked in my mind and I realized there were parallels between my failing body and our failing country. And then I realized that so many of us are in the same boat, struggling with our daily lives, feeling small, and powerless, and thinking we can do nothing stop the tsunami of hate.

I speak up because if I failed to speak up,  I would never forgive myself. I have lived in a country where I witnessed the enduring shame of the children and grandchildren of people who did not speak up. I have walked the same roads where millions traveled to their deaths and wondered what  I would do if I were faced with similar choices. 

I speak up because I want to answer that question in a way that will not haunt me today, tomorrow and beyond. 

This week

Dec. 17th, 2016 04:51 pm
morgandawn: (Default)
 Spent more time at my mom's this week as she's struggling with health issues.  [personal profile] xlorp also came down with a cold and has been working from home all week (no sick time allowed, but at least working from home was an option).  As a result, my own health is teetering. On the Friday weekly cooking,  I used the wrong meat in a dish, forgot  that I had another dish to prepare and had to come up with a new recipe because I had used up the meat, pulled on the wrong gloves (and wondered why my hands had shrunken), and  have carried items round and round, from room to room trying to figure out why I was holding them.
morgandawn: (Cat Basket Going To Hell?)
 My positional vertigo is not gone but lies lurking, ready to jump out at me like a jack in the box. Flying in planes and looking up or down seems to trigger it. The anti-vomiting meds are still effective.

I have had right ankle problems since April and have been working with a podiatrist to find a pair of shoes that will cushion my feet more. I already have custom orthotics and will need a new pair made. But I have been walking twice daily even with the right ankle pain. During my recent trip, I cut my walking in half and the pain went away. Unfortunately that level of walking = sedentary and I cannot maintain my current weight (nor my overall cardio health). A stationary or recumbent bike would be a good choice except  I'd have to use low resistance and it hurts my back. To match the daily walks I would have to spend three hours a day on the bike.   So I resumed my twice daily walks and now...

...now my left ankle is swollen and hurting and I cannot wriggle a few of my toes. Another visit to the foot surgeon surgeon next month. Last time he only took xrays and told me to start physical therapy for the right foot.  I am still looking for a physical therapist who can handle EDS patients. So I am back to the walking very little and am finding that the increased sitting is making my back flare up.   Jack in the boxes and whack a moles seems to be  my thing nowawdays.

In short, I will continue to be preoccupied by health and may be distracted, extra cranky and may ignore you.  

On another note: The only Star Trek series I did not watch from start to finish was Voyager so I have started that on Netflix.  
morgandawn: (Raph Girl Wind)
 I always hate blogging about personal health stuff - or I have started to hate it as the years go by. But here goes

*still in the middle of physical therapy for my frozen shoulder. We've learned that I have restricted mobility on both shoulders and problematic area in my upper spine.
*had another round of vertigo treatments - am still not able to sleep on either side (see also "shoulder" above) and have intermittent bouts of wooziness. Vertigo physical therapy should start in a few months.  The vomiting is under control.
*am still having problems sleeping - we will see the second sleep doctor in a few weeks, who will hopefully order the sleep study I needed back in August (the first doctor really dropped the ball on this)
*my ENT ran some more tests (and wants more) and says I am showing signs of early hearing loss (congenital).  Talk of hearing aids but that will have to wait
*the less said about my eyes the better
*ditto for ongoing ob/gyn/gi issues.

On the bright side, it rained this weekend. and I borrowed a book on clicker training for cats. So far Shiro knows how to touch a target. Sitting is 7 our of 10 times. I think he is just humoring me.
morgandawn: (Raph Girl Wind)
"CSF presents Prevalence of Hypermobility" starts at 18 minutes. Prof. Rodney Grahame’s talk about the prevalence of this condition at the 2013 CSF Craniocervical Instability Colloquium.

(Direct link)

And two slides (note: they are very large)

Slide 1
Slide 2

morgandawn: (Cat Sleepy)
I've read that fans are trying to post to DW/LJ every day for the month of Sept. I am not certain that is doable for me, for various reasons, but I salute you!

1. Home repairs start Friday (the POD storage unit is being delivered). I am, frustrated with how little I can do to help/participate - have already hurt myself several times these past weeks, once so bad I was in bed for 2 days. There will be much disruption of both schedules and locations. Imagine a "Napoleon planning for an Russian invasion" level of logistical planning. But hopefully with a better outcome. For Napoleon that is.
2. We just started watching Lillihammer on Netflix and are enjoying it.
3. We also started re-watching The Middleman
4. We are carefully hoarding the last few Miss Fisher Murder Mysteries from Season 2.
5. My energy/pain free moments to watch any of the above is limited. But they are sitting there with their siren like calls.



morgandawn: (Raph Girl Wind)

Ehlers-Danlos National Foundation Center for Research and Clinical Care at GBMC's Harvey Institute for Human Genetics to Open August 16

The Ehlers-Danlos National Foundation (EDNF) is proud to announce the upcoming opening of its first center, the Ehlers-Danlos National Foundation Center for Research and Clinical Care at Greater Baltimore Medical Center's (GBMC) Harvey Institute for Human Genetics. The ribbon-cutting ceremony for the Center will take place Saturday, August 16, in Towson, Maryland.

Sandra Chack, Chair, EDNF Board; Clair Francomano, MD, Director, EDNF Center, and Director of Adult Genetics at the Harvey Institute of Human Genetics at GBMC; and Bonnie Stein, Chair of the Board of Directors forGBMC Healthcare, were instrumental in the planning for the new center and will make remarks during the August 16th ceremony.

“Partnering with GBMC to open the first ever EDNF Center for Clinical Care and Research is an exciting new initiative for EDNF,” said Chack. “Ehlers–Danlos syndrome (EDS) often goes undiagnosed because physicians are not aware of the syndrome. The funding EDNF provided to establish this clinic is a major step forward in advancing EDNF’s mission to educate healthcare practitioners and patients and provide treatment to help people living with EDS.”

With the opening of the center, clinical research, education, and treatment for EDS, a group of inheritable connective tissue disorders for which there is no cure, takes a significant step forward. Funding from EDNF supports this virtual center at GBMC under the direction of Dr. Francomano. This premier EDS research and treatment facility will provide comprehensive clinical care for patients, professional education for physicians, and cutting-edge research.

"We are extremely grateful to EDNF for their support, which will allow us to raise awareness among both physicians and the lay public about Ehlers-Danlos syndrome and to expand treatment options for patients.  We are hopeful that increased awareness will lead to earlier diagnosis and better outcomes for patients with EDS.  Support from EDNF will also facilitate enhanced opportunities for research into causes of EDS and the development of improved means of diagnosis and treatment," said Dr. Francomano.

The ceremony, slated for 4 p.m. to 6 p.m., will occur at the Civiletti Conference Center located in the East Pavilion on the GBMC campus, 6701 N. Charles Street, Towson, MD 21204. Parking is available in the Iris Parking Garage next to the East Pavilion. To learn more about the EDNF Center for Research and Clinical Care, visit http://ednf.org/ednf-center-research-clinical-care.

morgandawn: (Ariel Yes?)
Help a woman with Ehlers-Danlos Syndrome move into an accessible apartment in Munich Germany. For those of you who do not live in Europe, many renters must "buy" or pay for "fixtures" (the kitchen and the washing machine) before they move in. [personal profile] mathsnerd is disabled and needs to raise funds by August 1 so that she can move into an accessible apartment. Her existing lease will end in a few months. More info is here and her GoFundMe page is here. However, for US donations it may be easier to go through paypal (she gives her paypal address in the first link). And for those who care to do due diligence before donating, [personal profile] mathsnerd assures us that her cats have reviewed the new accommodations and approve of the move.
morgandawn: (MoneyDog)
A good overview of things to consider when buying long term care insurance. and when to buy - start shopping in your 50s while you can still qualify.

"If you wait until you are in your 60s and health problems have set in, you may not qualify for any policy. And premiums are slightly lower when you buy younger."

Medicaid pays for long-term care — but not until people have already spent the majority of their financial assets. [Also, Medicare will only pay if you're admitted to a  hospital and then discharged from the hospital to the nursing home.]

“You can have a situation where a married couple spends down all their assets for the husband, which leaves the wife in a vulnerable financial situation should she outlive her spouse,” Mr. Fox explained.  more here

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