Category Archives: what works for me

no words

i spoke awhile ago in this post about the Gawler retreat in Australia. my friend Rel, who was diagnosed with stage IV (terminal) colon cancer went there twice for retreats and always spoke so highly of it. she passed away in march. she was such ball of light, always happy, always caring. just a beautiful person inside and out. a few weeks before she passed, she urged me to go to one of these retreats. she even began fundraising for me, my friend who was dying of cancer. she said she wanted to know that i was going to be alright. every time i think of that it brings tears to my eyes. i doubt i am even getting across a fraction of who she was and how much her life and that one simple gesture impacted me. we have spent the year honoring her and doing what we can to carry on the things that were important to her. my friend T who was very close with Rel decided to pick up where she left off with the fundraising to get me to Gawler. i have no words for this, just endless gratitude and love for my friends.

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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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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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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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so thankful

i have been reading off and on about dog DNA testing today. we have often wondered what birdie’s true genetic make up is. while we are quite sure that there is at least *some* pit bull in there, it seems that there is good reason to doubt that we can accurately determine her mix (or lack thereof) based soley on her looks. when i began entertaining the idea of getting a support animal, it seemed that there were so many possibilities as far as which dog breed i could get. should it be a pure-bred and adorable french bulldog? should i go though a rescue? the SPCA? get a mutt?

i have always favored the bully breeds and i have wanted one for as long as i can remember. but i wondered if living in a small apartment, working, and commuting an hour each way for grad school was too busy of a schedule to make a fair life for a pit bull. i mean, they are big. they are terriers. and they need to expend ENERGY. the last thing i needed was to come home and find my couch eviscerated by an overly bored dog.

so even though my mom had an incredibly sweet and gorgeous red-nosed pitty girl in her backyard, i hesitated on the idea of a pit bull. as you can see, from the posts in the blog, i clearly talked myself into her. i can say that it was not a decision without risks. i was so nervous we wouldn’t be able to make it work. for a time, we weren’t even sure if it would happen.

in late january, she was stolen out of my mom’s backyard and was gone for just about 3 weeks. we were so disappointed and sad over losing her. we truly didn’t think we would ever see her again. but we did. it was literally a spur of the moment decision to bring her home when we did. and the whole experience was quite serindipitous. since then, things have been rocky at times but now we all seem to be settling in nicely.

i’ve had a lot of time to think about where she was during those three weeks and also how getting a support animal went down for me. i could have chosen just about any dog from the shelter, gone to breeder, or found one through craigslist. but i’m so thankful for our pitty girl. not only is she a great dog, i also feel like i was in a unique position with my illness to secure forever a home where she was safe (never stolen again!) and loved for a very deserving dog.

rescues screen potential homes for thier dogs very caerfully, and even shelters with limited budgets do what they can to prevent dogs from coming back but times are tough. plenty of people who thought they were in a position to offer a dog a forever home are losing thier homes, or trying to find a place in a rental market that in general is not pet-friendly, especially not when it comes to bully breeds. consequently, good dogs especially pit bull type dogs are ending up homeless.

since she is my support animal, she has a legal right to stay with me in just about any living situation. at least in that sense, i don’t have to worry if i am foreclosed on and cannot find pet-friendly housing. in these times, that is about as secure of a situation as a dog or thier person could hope for. in a way, it felt like this was an opportunity for me to do some real good for at least one pit bull out there who needed a home. if you are in a position as i was–looking for a support animal, get a pit bull! they will be so thankful.

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