Tag Archives: well being

you’re a beautiful person and you deserve to be happy

i tentatively stepped onto the dancefloor…it’s been years. i made my first few sways to the beat…self conscious. i made a few more…it felt fluid.  and then my body got light…i was free. the dj flawlessly stitched together beats. three of us locked eyes and huddled together on a crowded dancefloor, yelling. three souls roaring– it was primal and perfect and then we floated away. i was sweaty, exhausted, out of breath. i closed my eyes and let it go. i felt the music. i felt it like a heartbeat through a lover’s chest.

later as i danced alone she grabbed my shoulders and looked at me pointedly, sincere and burdened. i leaned in and she spoke, “you’re a beautiful person and you deserve to be happy” then she hugged me tightly, this person with whom i share an uncomfortable history. in the middle of the dancefloor we made our amends. then we danced away from the moment to live another one, to string those moments together to form one perfect, healing night.

i didn’t know how much i needed this but i did. i desperately did. i drove home as the sun came up smiling and completely spent.

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our planter box is FINALLY done!!!

this was what it looked like a few months ago:

and this is what it looks like now:

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top row starting on the left going across: 3 squares carrots, 1 square swiss chard
2nd row: arugula all squares
3rd row: dino kale all squares
4th row: 2 squares spinach, 2 squares blue kale
bottom row: 1 square collard greens, 3 squares blue kale

our box started out much bigger as you can see in the first picture, but then after constructing it to be the larger size we realized there was NO WAY we were going to have enough dirt to fill the box. it could have been enough if the dirt in our yard didn’t look like this:

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NOTHING will grow in that!

and yes, in case you are wondering, “dirt” full of rusted and sharp things such as this DOES violate habitability codes. but our thankless landlord was less concerned about our safety and quality of life and more concerned about us using water (he pays for it). he removed the hose and sent us a letter stating that we agreed to plant native drought tolerant plants and water using a bucket filled from our kitchen sink…which is up a flight of stairs. we never agreed to any of that. so there was a delay getting our box set up and planted because we had to wade through some tenant-landlord negotiation muck before it could happen.

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we are really happy with the end result though. and we can’t wait to harvest some of these greens! having MS was definitely the impetus to eating better food, and eating better led me to learning more about what i am eating, and this in turn led me to making a planter box to grow veggies. now we have a yard that looks less like a construction site dump overgrown with weeds and more like a place i wanna spend my time. the neighbors are taking advantage of the hammock i hung which makes me really happy 🙂

none of this would have happened if i didn’t have MS. being diagnosed was and still is one of the most influential events of my life. but it’s not always a bad thing.

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not much to say

i have been pretty quiet lately. i guess thats because life is just chugging along and each day i think about having MS a little bit less. i LOVE that! i love that there are whole days i don’t even talk about it. it is exhausting to be constantly on guard and vigilant in your mind trying to solve every what-if of having this stupid disease. instead, i have been putting my free time to good use. now that SF has warmed up a bit i have focused on solving tangible problems in my day to day life instead.

for instance, we live in a building that has a coin-op washer and dryer. this has long been an issue. we hate doing the laundry because its expensive, the dryer doesn’t actually get the clothes dry, and its a pain to schlep everything up and down the stairs. in fact, one night K slipped on the steps and fell. i guess that makes doing laundry a hazard as well. SO, we have been looking into portable washers and line drying our clothes. if you have your own washer and dryer then you are blessed, but if you don’t you may understand what a HUGE improvement in our lives it would be to not pay $4.00 a load and have to use the washer that cat lady washes her litter covered floor mats in. i never thought i would talk so much about laundry!!

clothesline made from 3/4" wooden dowels cut to fit over bath tub

clothesline made from 3/4″ wooden dowels cut to fit over bath tub

bath tub clothesline in use

in use–holds a whole load of laundry and with the curtain pulled the laundry is out of sight 🙂

the next project i have been busy with is our back yard. its tiny, its mostly covered in shade by the upper decks of the building and at this point its completely neglected. i scored some great reclaimed redwood on craigslist for free and have been busy building a 4’x9′ planter box. the planter box so far has cost us about $15, which is an amazing deal for that size. i also hung up my hammock in the yard that i bought in thailand 6 years ago. i love hammocks!

backyard before

our backyard now

planter bed mockup

planter bed mock up. can’t wait to have this done!

other than that, we did our first training ride about 10 days ago and it was really fun and exhausting. my body was twitching from exhaustion afterwards but it was reassuring to know that i could do it. we made it 11 miles before we stopped for beer and food. not bad. 11% on the first ride towards our goal of 100 miles!

so thats about all that is going on in my life right now, i should be studying for my board exams but i haven’t gotten very far. i was never very good at studying and now i just feel completely overwhelmed with the amount of material i’m supposed to know for this exam. sigh. i’d rather build a planter or go for a ride. guess i better suck it up though, can’t be a kid forever i guess.

sharkmouth

on a hike in the northbay looking happy and shark-mouthed and CUTE

also, just because she’s adorable, heres a pic of birds. she had her first day of bad rap pit ed class and she did pretty well. a bit scatter-brained but she’ll get it.

that’s all for now!

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(part of) my next move

a good friend of mine who was diagnosed with stage IV colon cancer planted a seed many months ago about Gawler retreats. She has been to their 10 day cancer retreat twice. she believes it to be life changing, life affirming, and beneficial in her treatment. i should trust her, since at this point she has proved her doctors wrong and is doing better than they thought she would.

today i was cruising a MS forum and came across a research study that focused on an “Australian 5 day retreat” that improved quality of life for attendees–the Gawler retreat.

seed just sprouted.

this was definitely something that has been in the back of my mind since she mentioned it, but planning it felt overwhelming. K and I have been planning on a trip for many months, but so far no destinations have felt right or “stuck.” we have basically considered every country in central and south america, along with most of southeast asia, australia, AND hawaii!

it seems a bit serendipitous. i’m really hopeful we can make this work and that K will be interested in going. plus, we would get to see all of our australian friends again. win-win?

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the only way out is through

friday was the last day of my internship. i did well. things on the home front were stable (as opposed to last year when it seemed like the cosmos were conspiring against me), and i felt pretty good. thats not to say that by friday evening i wasn’t ready for bed at 8, and that i saved most of my energy for the internship at the expense of my social life. but hey, i got through it, and even did well enough to get a potential job offer out of it. so yay me!

as far as my MS treatment goes, i guess that was an expense of the internship as well. i am what the docs would call “non compliant.” twice now i have tried daily injections and twice i have failed at it. at this point, trying to stick with something that i have failed at twice is doing nothing for my body or my psyche. nobody likes to fail, and especially with something as important as disease treatment.

so, in an effort to move forward and do something positive for myself i am currently back at the proverbial drawing board trying to plan out my next move. I have big issues with drug companies, with the medical system in general and also with jabbing myself with a needle nightly. i guess i could get over that last point (no pun intended…) if i truly believed in the medications. but at best i am a skeptic, at worst a cynic. i have a hard time forming decisions about my health based off of published study results that have been funded by the drug companies themselves. especially in light of a recent study published in JAMA that showed absolutely no reduction of disability from using interferon medications to treat MS.

to sum it up, i have decided that nightly shots of unknown benefit and exorbitant cost don’t do anything for my skeptic’s heart. and to be frank, if i’m going to be on treatment that no one can tell me for sure works, i’d rather be on one that doesn’t hurt, leave welts, bruises, and permanent dents in my skin from the destruction of fatty tissue, thank you very much. 

this is what my body looks like after a week of shots. what you can't see are the hard, itchy knots, lumps, and sunken in areas of fatty tissue destruction. it's not "just a shot."

this is what my body looks like after a week of shots. what you can’t see are the hard, itchy knots, lumps, and sunken in areas of fatty tissue destruction. it’s not “just a shot.”

i am looking into the oral medications now. the one i am most interested in knowing more about, as are many people with MS is BG-12. this medication looks promising. BUT it’s release has had many hold ups and at this point no one can give a date for when it will become available. until that happens i am seriously considering LDN. so far, there are not many studies showing it’s benefit (mostly because it is a generic form and not made by a multinational billion-dollar grossing drug company…there’s that cynicism again), but many people have done very well on it. since even the big drugs for MS can’t guarantee me much of anything, i feel that because of the low cost, low side effects and oral dosing it’s worth a try. heck, it can’t be worse than doing nothing like i am right now.

so that is what has been going on with me. i’m still trying to get insurance of some kind. COBRA is taking forever to get into place. i have a $7,700 MRI bill that needs to be paid. i have to notify the study that i have been noncompliant. and our adorable dog is still limping. we are trying to get her insurance coverage but pet insurance is modeled after the broken, unfair human system so that has been tricky as well.

hi

i just had a fantastic weekend of holiday parties and a wine tour in Napa and now i am enjoying a day to myself in my pajamas. things have been ok and its great that 15 months after diagnosis i can even think that. lately i feel like i have been able to take bigger risks and do more without having anxiety and baggage hanging over me. its nice that i don’t feel like i am living in a minefield all the time anymore. diagnosis sure is a mindfuck, at least it was for me. at this point i am trying my best to forget MS is even a part of my life. i want to live like i did before, albeit with a few more doctors appointments, pills, and a LOT more intention.

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support animal 101 part 2

welcome back to support animal 101, i trust you have all faithfully and thoroughly researched all aspects of caring for your future support animal and have a good understanding of the laws that pertain to support animals. i say good because, well, those documents are boring, long, and written for robots. which brings us to our next step in bringing home your support animal:

3. develop your plan of attack

when i was trying to get my support animal, i was reading department of justice documents that left my head spinning. while it was clear that i had a right to the keep an animal, i had no idea how to actually get the animal. i really needed some additional guidance from organizations who were more familiar with interpreting ADA law than i was. i reached out to a non-profit called Pets Are Wonderful Support (PAWS) who also referred me to the Human Rights Campaign (HRC) to help this process.

reaching out was helpful because it helped me understand the laws a bit better, and it helped me develop the best strategy for my situation. these organizations may or may not be helpful to you (in fact, the person i contacted at PAWS was let go shortly thereafter due to budget cuts and they no longer have someone who is able to help with support animal issues) my point here is to reach out. start searching around for organizations who do advocacy for individuals with disabilities. send out emails asking for contacts. ask at your local shelter if they know the process.

in my case (and i can only speak for myself as different cities and states are going to have different laws) the process went something like this:

  1. signed note from the doctor stating the medical need for my animal
  2. acquire the animal
  3. complete all necessary city ordinance laws for vaccinations and spay/neuter
  4. present qualifying documents to the city shelter and pay a fee for assistance animal tags
  5. notify landlord of support animal and intent to bring home

i would bet that while you may not do things in the exact order that i did, you will still end up doing roughly the same steps. let’s go through each one:

1. doctor’s note

this note is a prescription for your support animal. it should state a clear need for the animal as a necessary part of your treatment. it should state exactly what the animal does to treat your disability, and this disability should be stated in a way that shows it interferes with a major life function. when (not if! positive thinking, folks) you get it signed have the doctor print it on their letterhead.

asking my doctor was a HUGE source of anxiety for me. i was really scared of hearing no and i was already feeling so down because of my diagnosis, i knew i would take hearing no pretty hard. so i went ahead and wrote the note myself. i knew from past experiences with doctors and filling out forms and writing letters that they don’t like doing it. and besides, i had the most at stake here. it wasn’t a huge concern of theirs to write a compelling note. so i drafted up a letter for my neurologist and presented it to her. she read it over, thanked me for writing it and signed it. my heart was literally pounding out of my chest and i had already planned out my rebuttal before even getting to her office, and within 30 seconds the moment i had literally built up for months in my head was over and i had my note.

here’s mine:

Dear ___________,

M has been under my care for Multiple Sclerosis since her diagnosis in September 2011. This condition has produced disability in terms of walking tolerance and fatigue. For these symptoms, M derives a great deal of comfort and support from her dog, Birdie. M has cared for Birdie for six months and is extremely bonded to her.

It is my professional opinion that the ability for M to continue caring for her dog is an important aspect in maintaining her health and well being. Birdie provides M with service and assistance directly related to her disability in the form of encouraging gentle daily exercise which ameliorates fatigue, and helps maintain her current walking tolerance to avoid future decline from de-conditioning.

If you have any questions feel free to contact me at:

Sincerely,

Dr. ___________, M.D.

it is not required to state your medical condition, but if you are willing to disclose, then i think it can help give the reader perspective–they may know someone who has the same illness that you do and having the ability to empathize with your struggles will make your letter more compelling and persuasive.

2. acquiring the animal

at this point, you should be familiar with ADA law and know what type of animal you would like to have as your support animal. if you are trying to adopt a shelter pet as your support animal you may have to speak with your landlord first to get permission for the animal to come home. most shelters (but not all) will require contact with your landlord to see if pets are allowed at your home. this is another reason why volunteering at the shelter might be beneficial. it allows you a chance to make personal relationships with the very people who could be adopting your support animal to you. while it may not be possible to adopt an animal to you until they speak with your landlord, if you have one in mind they might work with you on getting the animal home. or they may become your allies if you are having problems with your landlord.

you’ll notice that we acquired the animal and got all of the necessary paperwork, vaccinations, tags, etc. done *before* we brought her home. in our case, we had friends close by who were willing to look after her while we got everything sorted out. this took us about 5 days. we did it this way because we wanted to do everything up front and knew there was no way we could hide a 50lb pit bull until all of our to-do boxes had been checked off.

3. City ordinances for your support animal 

where i live vaccinations and spay/neuter are required, and in order to keep birdie as my support animal i was required to prove that these things happened. i had to bring supporting paperwork to the animal shelter. i also filled out some documents and showed the letter from my neurologist to get her assistance dog tags. check with your city animal shelter to see what they require for this.

4. notify landlord of support animal and intent to bring home

ok, this is a big one. i’ll tell you what we did. first, when my partner and i were looking for a place, we searched for one with a landlord we liked. we figured that in general this was a good strategy to ensure that our living situation was pleasant, regardless of the support animal. but we were also keeping in mind that a support animal was in the works for us when looking for a place.

once we were in our place we used a variety of tactics to make the transition smooth. we waited a few months so that our landlord could get to know us before we asked for the support animal. in order to build a good relationship with our new landlord we made sure to pay our rent on time every month, and in general did our best to be friendly, easy to manage tenants. if your building has noise ordinances, follow them. don’t be the squeaky wheel. and if you have an opportunity to say “good afternoon” to another tenant in the building or your landlord, always take it. you really want to build personal relationships with those in your building and with your landlord. trust me, not everyone will be understanding or welcoming of your animal. the best way to keep things harmonious is to build those personal relationships before your support animal comes home.

the people at PAWS recommended offering our landlord a deposit but we chose not to do this. just to be clear, legally you do not owe any extra money for keeping a support animal, nor do you have to wait like we did to get one (in fact, the advocate at PAWS alluded to the fact that ADA law covers having an animal even without the dr’s prescription or tag). however, many landlords are resistant to the animal being there and strong arming yourself into a support animal probably won’t be conducive to a happy living arrangement. you don’t want to be at odds with your landlord or the other tenants over your animal.

we started by contacting our landlord by phone and letting him know that we had a prescription for a support animal and planned to bring her home. we scanned all of her paperwork and her pet resume along with a photo and emailed it to him. at that point, i think it would have been hard for him to turn us down.

offering a deposit is one way to help reassure them that you will keep your apartment in good condition. since we were planning to bring home a pit bull, we opted for renters insurance, which insures us in case our dog does the unthinkable and bites someone. our renters insurance company wrote a letter stating that we as well as our dog were covered under this policy. again, while this is NOT required to get renter’s insurance its a wise investment for anyone renting and it went a long way in smoothing things over with our landlord.

one thing i wish we would have done but didn’t is to notify the tenants that birdie was coming. we live in a four-unit building and everyone in the building loves our dog (and so does the landlord) except for one. we have recieved notes on our door, complaints to our landlord, and general difficulties with this person over our dog. i can’t help but wonder if we had taken the time to personally let each tenant know about her arrival if our relationship with this tenant would be better.

 so there you have it folks, our process on getting a support animal. i hope it takes some of the mystery out of the process for you. and just for some motivation, here is another adorable picture of birdie. you know, just in case you haven’t seen enough of them lately.

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support animal 101 part 1

i had been hearing about support animals long before i was diagnosed, so naturally i decided after learning of my MS, i was ready to get my very own. i scoured the internet trying to find information on how to go about the process and i found nothing that laid out step-by-step how to get a support animal.

having gone through it, i would like to pass on what i learned so that others out there who are like me, wringing thier hands in anxiety wanting a support animal so badly but not sure how to start can learn and develop the cajones to go through with this. its easier than you think!

when thinking about what guidelines would have been helpful to me, this is what i came up with:

1. Know and understand the laws

you have to start with doing your research. know what having a support animal means for you and those around you. know when your landlord can say no or ask your animal to leave. it is vital that you have a clear picture of what is and is not legal for you to do. support animals are very different than service animals. while the two are often lumped together when discussing ADA law, you can get into very big trouble for misrepresenting your animal.

support animals are protected by ADA law for individuals who have a psychiatric or physical limitation that interferes with a major life function. and this ADA law only allows you to keep your animal on your home premises with you. it does NOT allow you to take your dog to a restaurant or into the grocery store, or in general let you bring your dog out to public places that an animal would normally not be allowed to enter. ADA law also governs what types of animals you are allowed to keep as a support animal and these differ from what is allowed for a service animal, and you should familiarize yourself with these distinctions. which brings me to my next point…

2. research the animal you are interested in getting

this point is really no different for a person getting a support animal than it is for any other person looking to bring an animal into their lives. you MUST do the research. know your personal limits. if you have mobility or endurance difficulties, then getting a rambunctious lab puppy that requires 2 hour walks and daily trips to the dog park is probably not the best choice. your support animal will still require care and upkeep. are you sure you can provide it?

ADA law does not make your support animal untouchable. if you are a careless caretaker there are grounds for your support animal to be asked to leave the premises. in order to keep your landlord from invoking his/her rights within the law, you must make sure that your physical or psychological conditions do not prevent you from providing appropriate care for the animal that you would like to have. the best way to do this is to really understand what your animal requires for care. research, research, research!

additionally, before you bring an animal home, it might be wise especially if you are a first time owner to get firsthand experience with caring for animals. a good way to do this is to volunteer at a shelter. shelters take in the full spectrum of companion animals from chickens and guinea pigs to dogs and cats so you will get to see a full range of breeds and temperaments to find out what works best for you, and maybe even find your support animal in the process!

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in summary, your first responsibility is to be a good caretaker of your animal. the best start to this is to understand the needs of your animal. research what the animal you are considering requires and know if you have the ability and the resources to provide the care they need. this is true for all people looking to care for an animal, but this is of even greater importance for someone looking to get a support animal. having a support animal is not a get out of jail free card. it does not excuse us from being responsible with our animals nor make us above the law, it in fact makes us more accountable to the people around us.

trust me, there will be people who will think you are playing the system. and there will be others who dislike the fact that you have a support animal and will do everything in thier power to ruin it for you. without a thorough understanding of how the laws protect you and your animal, you run into the possibility of making a mistake that can lead to your support animal being asked to leave the premises.

so do your research while you wait for part 2 🙂

and in the meantime here is yet another picture of my adorable support animal to help motivate you


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sugar coating leaves a bad taste in your mouth

whoever says MS doesn’t define them is a liar. MS affects every part of my life! every part. even the private ones, the parts i work very hard to compensate for. it affects how often i see my friends, whether my house is clean, where and how often i shop for groceries, and what job i will take in the future. it is something that i have to consider in every aspect of my life. now tell me, how does that not define me? how does that not shape the decisions i make–the decisions that form patterns and habits and roles? the decisions that become actions which are consciously executed by my body and mind and are visible and observable by those around me.  how is that not then, a definition of what i do and therefore, who i am?

i get really tired of hearing such ridiculous mantras from people. MS does define us! let’s just learn to be ok with that. let’s just learn how to grow in this definition instead of wasting our time trying to convince ourselves that it doesn’t exist.

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