Tag Archives: multiple sclerosis

It Gets Better

This morning I was sitting here sipping a cup of tea and I realized that I don’t feel MS-y anymore. Like, my morning didn’t consist of my eyes and arms shaking from fatigue or me feeling like I was made out of lead every time I tried to move my body or get out of bed. I also realized how little I actually think about having MS on a day to day basis.

Maybe that is a small thing to someone who has not experienced chronic illness but it’s huge to me. It’s not just about my physical health improving, though it did. Mentally I feel in control of my life again. Emotionally, I feel balanced. I can (cautiously) dream of a future without an overwhelming sense of fear, sadness, or grief.

When I think back on the last 4 years only one word can describe the first year in it’s entirety and most of the second: hell. It was a living hell.

Some of you are living that hell right now and my heart goes out to you because I will never forget how awful it was. But I’m not writing to rehash those painful times or tell you that my life is perfect and symptom-free (it’s not) I’m writing because today is a milestone. A day that I actually feel good and positive about my life with MS and I want you all to know that it does get better.

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taking inventory

it’s been just over a year since diagnosis, so i thought it would be a good time to discuss my symptoms, my treatments, and my future plans.

signs and symptoms
lhermittes–severe, diffuse tingling/pins and needles in my legs from 5/11-11/11. i still get this occasionally when i am walking, but its very mild and mostly on my right side now.

Arm pain/tingling/numbness–this started around the time that the lhermittes faded away. it was also around the time that i was trying to type my research proposal in my grad program…how timely :/ it was bad enough that i had trouble sleeping and bending my arms made the pain worse. the tops of my arms go numb as well, along with tingling in my 4th and 5th digits. i still get this, but its less intense and usually when i am very fatigued.

FATIGUE–this is probably my biggest struggle right now. i know its going to be a fatigue day when i wake up and my eyes are shaking (nystagmus) and i have an intention tremor. luckily, they both disappear after a few minutes, but its a good warning that i need to take it easy. in general, i have to take it pretty easy but i am trying very hard to push myself and build some endurance. this is one of the reasons i have birdie. in fact, the last couple of days we have gone on some epic walks and i have handled them well. MS:0 Meagan:1!

Cognitive–another big hurdle for me. my memory is TERRIBLE. its super frustrating to know that you should have remembered something, to lose things constantly, to only be able to do one thing at a time, to need to write EVERYTHING down or put it in a phone calendar, and still manage to forget half of the things you need to remember.

Clonus/spasticity–it’s mild, barely even noticeable but definitely there. just after i got my MRI’s back from the workers comp doctors (the ones that found the lesions originally), i saw my physical therapist and showed him the MRI results. he was in disbelief too and he said, “but you don’t have any spasticity, see i can’t even illicit clonus.” as he repeatedly lifted the ball of my foot to show me…and then my foot began to involuntarily beat. i did have clonus. he looked up at me, a bit surprised and a bit grim. at that time, i only had it in my right foot but now i also have it in my left. ah, sneaky progression how i loathe you!

Balance–i lose it often! prior to my diagnosis i was seeing a chiropractor who picked up on these problems before anyone else. each time i attempted the tandem romberg i would sway wildly and lose my balance and it didn’t get better over time. i notice this at key times for instance, when standing at the edge of a rocky cliff. i guess i should avoid those…

Muscle Fasciculations–i get these all the time, everyday. it started just after i was diagnosed. they are annoying and sometimes when they affect a larger muscle a limb will jerk involuntarily. they don’t hurt or cause any issues though. most MS docs will tell you that they are not related to MS but seems like every person i have talked to with MS has these.

Itching–another unproven symptom, but troublesome nonetheless. i get itching spells primarily involving my legs. the sensation is like itching mixed with being poked with something pointy. i believe that the rise in body temp after a warm shower brings on the itching. it also coincided with a flare at the time of diagnosis and has since improved.

Visual disturbances–this is a problem especially when i am fatigued. i skip lines, misread words, rearrange letters, and am noticing more and more that i need to increase the font size and brightness (thereby increasing contrast) on my computer screen when surfing the web or writing in a word document. i also have noticed that i prefer writing in blue ink because of the contrast it gives. because of these things, i hardly ever read anymore. it’s a shame, because as a kid i loved to read.

treatments

Vitamin D study–i am a study participant in a randomized control trial through UCSF that is studying the potential benefit of high dose vitamin D combined with copaxone. each night, i take a vitamin D tablet of unknown dosage (double blind) and my copaxone shot. once every few months i meet with the study coordinator to do standardized assessments and track my EDSS score (mine is currently 2.5, in case you were wondering). the study is 2 years long and includes MRI’s.

Gluten and dairy free diet–these days, food is the biggest purchase i make each month. that’s because we shop at whole paycheck (er, whole foods). still, it has been very good for me and i am happy with my choice to quit eating junk.

future plans

overall, i take very little medication and i like it that way. i am not big into committment and many of the medications that i could take to control things like the lhermittes and arm pain (which are both enough of a bother at times that i have considered it) have to be titrated up and down–i cannot miss doses or decide on my own to quit taking them. boo!!

Supplementation– i am researching now taking B 12, COQ10, cordyceps, and alpha lipoic acid and acetyl L- carnitine for fatigue and immune system function.

Accupuncture and Chinese Medicine–this has been on my list for quite some time. i am excited to make this happen, and think it could go a long way to improve my mood, fatigue and pain/symptoms. maybe even progression? who knows.

Diet–i have been thinking lately that i need to keep pushing myself forward in this regard. i know i have high levels of inflammation in my body because of my overachieving immune system. there are diets that can help, so the next thing i plan on removing from my diet is legumes.

Exercise–yesterday birdie and i were walking machines. i love the fact that i live in a city that i can complete many of my errands on foot, with my dog. very convenient! i am also taking swim lessons once a week and i love it. as soon as i am able to do the flip turn i will begin lap swimming. pilates are in the works as well. for some reason, i am struggling to build up the courage for this one.

overall, everything still works pretty well but it is disheartening to see progression. just a few months ago i was a 1 on the EDSS scale. they say that RRMS is progressive and that progression is caused by flares. i have never had an all out flare just lots of subclinical flares that cause mild issues, most are hardly noticeable. in fact, at the time of diagnosis i had 12 lesions. i was totally unaware of any of them! i think flares happen subclinically all the time. regardless, i fully intend to be as healthy as i am this year when i update on the second anniversary of my diagnosis.

birds and i on an afternoon walk with one of K’s coworker’s dogs. she is wearing a holt anti-pull headcollar (its not a muzzle)

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9/5/11

this is an email i wrote on  9/5/11. one year ago. in a few days i will have been diagnosed for a year. seems like a lifetime. 

so i guess i should begin with how a MS dx was put on the table. i have been having back and shoulder problems for almost a year and i have had tingling in my legs for about 6 months. recently, i reinjured myself at work and because i now have tingling in my hand, the docs ordered a MRI. thats when this all began. the MRI goes on at length about the multiple lesions in my cervical spine and one in my lumbar spine (“confirm MS dx clinically” “further workup advised”). i was referred to a neuro who examined me and then ordered more MRIs that included ones of my brain.

i just finished those on thursday and i am now stuck in a waiting game to find out what the neuro thinks. my uncle is a nurse practitioner in a chronic pain clinic and when he found out about what was going on he called me and wanted to know about the MRI findings. he said he expected them to find brain lesions as well. he apoligized and said he has worked with many patients with MS and given that i have multiple spinal lesions he was fairly sure i would have them in my brain as well.

i am hoping that this will be something else. even when my neuro wouldn’t speculate as to the cause of the lesions, only saying that MS was the most common reason for someone my age to have spinal cord lesions i didn’t lose hope. it was hard to hear it from my uncle, knowing that he does have a lot of experience working with patients who have MS, but i still was not thinking it could be true. however, yesterday i went to visit my mom (a critical care nurse for 30 years) and we were talking about the MRIs and i mentioned that my uncle thought they would find brain lesions. she quietly said, “i do too, honey.” she averted her eyes. at the time we were eating brunch at a restaurant and i instantly lost my appetite. it was SO hard to hear that from my mom.

last week was probably one of the hardest ones of my life. in addition to going through marathons of MRI’s, i was basically ambushed by the drs in the occupational health clinic at work (original MRI was through workers comp). i had two doctors going on at length about how my symptoms were from MS, asking me questions about how i felt, telling me they were going to drop me as a patient because i have MS (even though my neuro has not even confirmed this yet…how do they know? i guess MS patients cannot also have a work-related injury??). i felt completely demoralized after leaving the office. an hour of two doctors interrogating me, teaming up and working off each other to make me feel as awful as they possibly could about my future. i went back up to my unit and cried in the break room…and i am NOT a “crier.” i almost never cry.

if i am really honest with myself then i have to admit that i have had some vague symptoms for quite some time. i just thought that was me. i was seeing a chiropracter and he discovered that i have a positive tandem romberg test (balance issues). at the time, he was trying to convince me that i had this because of a gluten intolerance. but i suppose i can now safely attribute that to the spinal lesions. i have always blamed the chiro for the tingling i feel in my legs. he adjusted me and then later that afternoon i first felt tingling in my legs. now i wonder if the spinal lesions were the culprit and it was just coincidence that it started after the chiro session.

the neuro cautioned me against hot baths, etc. and in direct defiance of what she said, after my appointment i came home and immediately ran a hot bath. when i got out i was shaky and didn’t feel well. same thing happened to me this weekend. i went up to the mountains and had to shut the a/c off when i was driving up a steep incline. by the time i got to the top i was shaky again, and by the end of the day i was completely and totally exhausted. that was yesterday. i slept about 10 hours last night and have done nothing but veg on the couch all day and drink 4 cups of caffienated tea and i am still ready to fall asleep. i also have been having such a hard time with memory. if i answer the phone at work and the caller gives me thier name, by the time they tell me who they would like to talk to i have forgotten it. maybe its just stress from everything going on, but it seems like it gets worse everyday.

i am meeting with the neuro on thursday and i feel like the closer it gets, the harder it is to think about anything else. anytime i am quiet, my mind wanders to MS. the countdown is agonizing. gah! my final year of school…seriously?!

anyways, sorry for going on forever…i’m just trying to manage all of this and get through the week without falling apart.

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GF CF mac n cheese

one of the things i have missed most about being gluten and dairy free is tasty mac n cheese. i tried a couple of recipes but none were quite right, so my lovely kitchen-savvy partner whipped up this recipe in the kitchen one night. we love it! maybe you will too


-preheat the over to 350
-boil a pot of water and add 2 1/4 c. dry gluten free pasta (we used bionature elbows)
-cook pasta until it is half done then drain and set aside

while the pasta is cooking, add to another pot:
-2 tsp. butter substitute
-2 tsp. sweet rice flour
-1 c. unsweetened hemp milk
and make a roux–stir until lumps are out and the mixture thickens over medium-low heat
-add a pinch each of onion and garlic powder–a little goes a long way
-add 1/2 c. or more 🙂 of cheese substitute )we use daiya mozzarella and cheddar)
-allow cheese to melt and mix into roux
-salt and pepper to taste

-pour pasta into the roux and stir until noodles are coated
it should seem a little too saucy–this is what you want because the noodles are going to need moisture to continue cooking
-pour the noodles and sauce into a small greased baking pan
-sprinkle more cheese and some gluten free bread crumbs on top
-cook for about 20 mins until the cheese is melted and the sauce is bubbly

serves about 4

and if you are daring, the next morning you can fry an egg and throw it on top of the leftovers for breakfast like i do.

Enjoy!!!

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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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gluten and dairy free

if you were to go to the MS society right now, you would find that their website spouts some drivel about how having MS does not require any sort of special diet other than the same balanced “healthy” diet that is recommended to the general public. if you then brought up a dairy and gluten free diet to a top MS specialist and researcher (such as the doctor i saw at UCSF for a second opinion) you would probably hear the same answer i did–that no special diet has been shown through research to be of benefit to a person with MS. and this is true, but its only half the truth. what the doctor is leaving out is that no one is bothering to look into it from the medical world, which says nothing about the potential efficacy of such a thing. it simply means that at this point there is a lack of interest. and why would they be interested? who would fund them? teva neuroscience?

think about it: MS medications are costly and patented. there will never be a generic form of copaxone. it will never cost under $2000 a month. why would it? they have us cornered. we have no other choice but to take what they offer and for the price they offer it or take nothing at all. the docs back them up by telling us, the patients in our weakest moment that this is all that there is to offer us. that this is the only piece of hope out there. of course they do.

you can’t patent food, my friends.***

we have choice at the supermarket and we can grow our own food. insurance companies, pharmaceutical companies, and your doctor will never benefit from you having these choices. so why would they encourage you to make them? why would they disrupt the power dynamic they are profiting from?

the other thing that they don’t tell you is that there is a wealth of data–both researched and anecdotal that supports diet as a factor in autoimmune disease. and there are people (like Dr. Swank) who have devoted their lives to getting this information to those suffering with MS.

the medications that our neurologists have told us we should be taking all have side effects. for me, copaxone has caused new allergies to surface. for other medications, there can be a negative effect on liver function, flu symptoms, and or other side effects. the treatment for these is usually more trips to the doctor or more medication. thats a win-win for your doc and pharmaceutical companies.

i get asked frequently by people what my reason is for choosing to be dairy and gluten free. its simple: medications are expensive and they aren’t all that effective. they also have side effects. to be fair, changing my diet has had side effects too: i lost weight, my blood pressure went down, my complexion cleared up, and i am eating way more fruits and vegetables than i ever have in my whole life. even if it doesn’t help with my MS, this diet is a win-win for me.

when i was first diagnosed, i was offered a lot of different medications. valium, flexeril, neurontin, etc. each one of these has serious side effects including physical dependence and NONE of them will, without a shred of a doubt keep me from progressing. there isn’t even a guarantee it will make me feel better. but most doctors would be more apt to suggest taking any one or all three of these medications over recommending a dairy and gluten free diet. something is wrong with this picture, don’t you think?

while i don’t think that diet is enough to keep this disease from progressing, i think that we have a right to know the whole truth about it. MS medications are not the holy grail of treatment. there is no magic pill to make this all go away. but there are pieces we can add together to hopefully create a better outcome for ourselves.

“there is no money in healthy people or dead people. the money is in sick people”

–bill maher

***except that sadly, in our times monsanto would LOVE to see just that happen. this is why organic, local food is so important! in the short term, conventional foods might save you a buck or two (and don’t get me wrong, i’m not on a soap box here and i do still eat at non-organic restaurants and buy some non-organic foods), but buying GMO foods (and nearly all conventional food is GMO) is, IMO and as my grandmother would say “penny wise and dollar foolish.” consider the larger picture, folks.

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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!

***********

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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me and you vs. us

for me, being diagnosed changed ALL of my future plans.

at the time i was diagnosed, my partner and i had only been together for about a year. things were good but still at a point where we could take it down many different roads–were we partners? were we just lovers? was it growing into more or receding into less? i had no idea if she would want to stay, i mean, its a pretty hefty diagnosis. so i had no expectations. for her it seems there was no question, or least not one she needed to deliberate on for long–she stayed. right now we are struggling. i am not sure how much the diagnosis plays into that. i’m sure she gets tired of feeling like MS dictates what we do and when we do it. i really try for it not to be like that. i really try to continue to be the same person i was before…but the truth is i’m not.

a lot of times she doesn’t understand how i’m feeling and there are times i really wish she could be more supportive and less quick to assume that i am intentionally doing things to upset her. but then there is also a part of me that remembers how hard it must be to love me, someone who faces every day with the knowledge that all bets are off for my future, and by proxy for hers too if she stays. i have to remember that she is adjusting to this too and she, for better or worse can’t feel what is going on in my body.

it must take incredible amounts of empathy to be a partner to someone who has a chronic illness.

and i’m trying to remember that she is doing the best she can too. and that most of the time she is very helpful and understanding. i just wish i knew how to make things more normal.

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just the start

one year ago, k. and i boarded a plane to puerto vallarta. i didn’t know it then, but my life would change on that trip. i came down with shingles, which caused a MS flare, which caused chronic tingling in my legs that took 6 months to go away. eventually, it led to my diagnosis.

i had no idea what i was walking into when i got on that plane. quite literally and figuratively, i was leaving behind my life as i knew it. the cascade of events that would follow changed me.

forever.

this is just the start of an entire year of anniversaries.

since that spring break trip (my first and only in a shamefully L O N G college career) i can feel the difference in the me before diagnosis and the me after. last semester feels like a dream. it is the bridge between the two me’s–the months where i transitioned between them. it’s not that i don’t believe in the same things that i did before, or that i can no longer relate to the hopes and dreams that i had before diagnosis. it’s just that life in general feels different.

last semester was 4 months of sadness and fear and loss. and now i’m past the initial shock and i no longer have tingling legs (although i still do get tingling occasionally when walking). but i haven’t lost that sense that sometime soon the other shoe will drop. i am learning that i will probably always feel that way.

maybe next year i can learn to be ok with that.

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