Review-Squid Medical Id from My ID Square

When I first set out to find a medical id bracelet, I knew I was going to need a fair bit of space to fit everything I wanted to convey to emergency workers or doctors.  I also knew that the information on it was likely to change often, as I felt including my long/weird/rotating list of medications was important.  My first stab at a solution for this was the Vital ID medical bracelet.  The paper insert allowed me space and flexibility to write (most) everything I wanted, and it stuck out enough that I felt most emergency workers would notice it.

However, I still wanted to be able to convey more.  I began looking for more “techie” solutions to the problem.  I had seen the USB based medical jewelry, but had been warned EMTs would not be able to access it and Hospitals were too cautious to put foreign USBs in to their computers anymore thanks to the increasing problems with hacking/malware/identity theft breeches (big HIPPA fines).  So that was out.  Then I stumbles across QR code based medical jewelry.

A QR code, for those unaware, is kind of like a barcode on steroids.  In many cases, it allows you to link directly to a specific, online website.  Once pretty obscure, they continue to grow in popularity, and not just for medical ids.  Checked out you McDonald’s cup recently? You will probably find a QR code linking you directly to the nutrition information.  Need video instruction on how to put together your kids new toy? Scan the QR code to be taken to step by step YouTube instructions.  Once you start looking for them, you will start spotting them everywhere.

Their popularity is increasing, partly due to the fact they are pretty much universal (no matter which QR code app you use, they all go to the same place) and partly because everyone plus their dog has a smart phone.  No longer do I have to go home and hop on the laptop to know the fat content of my Big Mac, just scan the QR code with my phone and I have instant access.  As Dean Pelton would say, easy peasy lemon squeezy.

Thus, the point of a QR code based medical id is to link to an online website that has your medical info.

After researching different companies that offered QR code medical jewelry, I decided on My ID Square.  One of the most important factors for me was the lack of a yearly fee–my “Squid” purchase came with a lifetime subscription to the website.  I had also read reviews that said My ID, another prominent QR code medical jewelry company, had problems with their QR codes wearing off and becoming unusable. The Squid can be accessed both via a smartphone with any QR code reader (many to choose from, most are free) or online via a website and pin code.

The variety of accessories that was available on the My ID Square site was a definite plus, though it is easy to see that bracelets/necklaces not from them would work just as well when paired with the Squid.  Taking advice from EMT’s I had spoken with, however, I did not want to make my bracelet too “jewelry like” and thus went with a plain silicone band.

I also liked the clip-on charms they recommend, a way to get across quickly your medical condition before scanning the squid and help draw attention to the bracelet.  The ‘multiple medications’ one certainly fit, but otherwise the closest thing to what I have was the generic ‘heart condition’.  However, then something really cool happened.  After several requests, they company offered a pre-order for a POTS charm.  If they got 12 orders, they would go ahead and make the charm!  Not long after, request and pre-orders for Dysautonomia, EDS, and Gastroparesis were made.  But they had me at POTS, I had to have one.

I waited anxiously for my new squid, charms, and bracelet to arrive.  Seemed like forever, but it was only like 2 weeks.  Since then, I have been very pleasantly surprised how much I like it.  I was somewhat dubious about the silicone bracelet; I was worried it would look silly/tacky for someone my age to be wearing a silicone bracelet.  But I actually really like it.  I, of course, got it in Aqua for Dysautonomia, and was happy how similar to turquoise it is.  And, not surprisingly, it is pretty comfortable.  The actual color of the Squid I wanted was out of stock, but it retrospect I think my second choice color actually works better.

The web profile was easy to activate and simple to input the information.  It offered options for

• Name, age, photo, languages spoken
•  Primary doctor and contact info
•  All other doctor’s contact info
•  Emergency contacts phone, text and email
•  Medication, food and other allergies
•  Surgeries
•  Medical Problems
•  Medical Devices
•  Medications
•  Pharmacy
•  Advanced Directive information
•  Date of last tetanus shot
•  Where your electronic health records are stored
•  Preferred Care Center

It also has a spot where you can put general information that might be pertinent in an emergency, such as where a epi pen can be found, or in my case, to give fluids.  It also gives the option to download or email the information if wanted.  It cannot, however, link to a full EMR record, at least not currently.

As a final neat trick, anyone who scans your squid can press a button to alert your emergency contacts that your Squid has been accessed.  You can set it up so they receive a text, email, or both.

I do wish it had a little more room and/or areas where I could give instructions.  The lovely thing about having a condition nobody has ever heard of is you spend A LOT of time explaining to doctors how to treat you.  I carry summary medical journal articles of my conditions in my purse, you know, just in case google happens go down or something.  I would love a bit more space to include “more information” links about my conditions or detailed instructions from my specialists.

Thankfully, I have not had my Squid scanned yet (by medical professionals, anyway).  I asked a couple of local first responders if they would know what to do if they saw one, and that has been a bit of a mixed bag.  However, they all thought it was really cool after learning about it.  Hopefully as the word about this kind of technology gets out, awareness of how to use it will improve as well.

For me, one of the most comforting facts about having the Squid is that both my husband and myself are able to scan it.  The majority of the times I have ended up in the ER, it is because my husband is taking me in to get fluids after an episode.  I don’t need an ambulance, but I do need a liter or two of fluids.  And if it is to the point I am needing to go in for fluids, I am usually not at the top of my game.  I am often out of breath, brain foggy as all get out, and filling out forms while describing my multiple conditions is not exactly easy.  Now, either of us can just scan the Squid and hand it over.  Could I do the same things with a piece of paper in the purse or wallet . . . probably.  But this is much easier to update (vs. editing and reprinting or someone trying to read my chicken scratch) and my phone is always on me–not always so with my purse.  It did, however, prompt me to finally upgrade to a knock-off brand smartphone.  So I guess I can also thank it for also nudging me into the 21st century.

(My previous phone–most of you probably don’t even know what this is)

In terms of security, someone must scan the QR code or visit the website with your personal pin code (on the back of the squid).  As you can see, I covered my squid with tape before taking a picture as you can access the online profile even by scanning a clear enough picture.   For this reason, I also tend to wear it on the inside of wrist, though I doubt someone could get close enough to scan it without me noticing.  Plus, I figure if I end up on the floor, I will probably be palms up anyway.

According to the company, the info is protected behind  a “firewall protected secure database. Customer information is never shared, sold, or otherwise provided to third parties.” Obviously, if it is on the internet, it runs the risk of being hacked.  But with the mandate for medical records to go electronic as well as several high-profile hacks of big healthcare companies (one of which I know my data was included in), I figure my medical info is probably going to get out eventually anyway.  Heck, the NSA probably knew what I had before the Doctors did.  Even so, I only put information on my profile that I feel pretty comfortable about if it somehow did get out.  For instance, I do not put my address, my insurance information, and for the love of all that is holy, DO NOT put you Social Security number on there.  In my mind, the risk of it getting hacked is pretty minimal, especially since my Squid profile contains at lot less info than some of my other electronic medical records.

The one problem that I had with my Squid medical id was actually a problem with the POTS charm I was so excited about.  Unfortunately, after a few months, the ‘POTS’ started to rub off of the charm.  I contacted the company to let them know about it, and they reported that there appeared to be a defect in the manufacturing process, and that others had reported similar problems with their POTS charms.  The offered to replace the charm with a new one after they finished switching charm manufacturers in a few weeks.

I am happy to report that they did replace the charm, and it now seems to have some sort of protective coating to prevent it from happening again.  They replaced and mailed it free of charge, and even emailed afterward to make sure I was happy with it.  So A+ for customer service!

Overall, I am pretty pleased with my Squid medical id.  However, I will add that I do not exclusively wear my Squid.  I also continue to wear my Vital Id bracelet as well.  I figure by wearing both, I have all my bases covered.  I realize not everyone knows what a QR code is, and rural emergency responders are not always issued smartphones as part of their job.  Indeed, in my mind, I keep my traditional medical id around more for the EMTs/field responders, the Squid for the emergency room/hospital.  However, I figure if we are talking about emergencies, the more options covered, the better.

Squid medical id’s by My ID Square, available in both a charm and as a dog tag.  $58 at http://www.myidsquare.com/pages/squids-square-ids-that-connect-to-medical-profile

Bonus: Sales of the Dysautonomia charm benefit Dysautonomia International

My Mobile POTS/Dysautonomia Bag

To say that chronic illness requires you to make some adjustments in life is a bit of an understatement.  Each individual must learn how to adapt to their new situation, something often easier said then done.  As it turned out, My type A ‘must plan everything’ personality is not particularly compatible with having a condition like Postural Orthostatic Tachycardia Syndrome.  The last several years have been a lesson on learning to live in the moment and realizing plans are made to be broken.

    

That said, some vestiges of my ‘plan down to the minutest detail’ personality still survive.  As such, I have a “POTS Kit” I try to keep with me at all times–because, as we all know, stuff happens.  This is somewhat easy for me as I have always been a “big purse” girl.  As such, I have a lot of space to work with.  So, here is what I keep in my POTS kit, which fits into my purse, backpack, messenger bag, or whatever I am using to keep my stuff on me at any particular moment.

 

Contents:

• Wrist Blood Pressure Cuff
• Pulse Oximeter
• Powerade Zero Drops
• Pedialyte Sticks
• Elete Electrolyte Drops
• Thermotabs (blue pill box)
• 3 Day Supply of all my medications (My Pills box)
• Back-up Medical ID
• Medical Journal Summaries of my Conditions (not pictured, kept separate in purse pocket)
• 8 oz bottle of Powerade Zero
• Mini bottle of tums (for those bad tummy times)
• Wisps mini disposable toothbrushes (for when bad tummy times come up for a visit)

Do you have a portable “kit” you keep in case of emergencies when out and about?  What do you keep in yours?

Invisible Illness & Invisible Disability Signs

For those who follow my blog, Pinterest, or Facebook page, you have probably already seen these.  When I first had the idea to create some home-printable business cards for awareness, I wanted something that got the point across that even though I look fine, I have a disability.  The wheelchair, of course, is pretty much the universal sign of disability.  The problem is, I do not often have to use a wheelchair.

On my worst days, yes, I may need a wheelchair.  Other days, I may use my rolling cart with a seat.  Still others, I may be perfectly fine just walking by myself.  Dysautonomia is like a box of chocolates, you just never know what you are going to get–it can vary from day to day, hour to hour.

However, that reality does not fit well in to  society’s perception of disability.  You either are or are not disabled; no one believes it can be a transient state.  Yet for millions of those with chronic illnesses, it CAN be a transient state, or at least a varying one.  People don’t understand why one day you can be at Nordstroms shopping like a normal person, and the next day at Walgreens in a wheelchair.  And without one of the universal signals that conveys a reason for needing assistance (e.g. grey hair or an appendage in bandages) one is likely to get strange stares at best, and nasty comments at worst.

At one point, I was actually considering buying a walking cast to wear when I felt I needed to use a wheelchair or mobility cart at the store.  If I was wearing one of those (despite the fact I did not actually NEED it) I was unlikely to be bothered or questioned.  I never did buy the walking cast, mostly due to the expense, but also because I felt I should be strong enough to defend myself and my invisible disability.  Yet I found myself just avoiding leaving the house all together; the thought of possibly having to deal with mean, ignorant people while also feeling like crud was just too much.

Thus, began my search for an image that conveyed that though I look “normal,” I have “unseen” issues that affect my abilities.  I did not want something sarcastic or confrontational, even though I could definitely identify with those sentiments.  And I did not want to go into too much detail about my particular condition.  I wanted something professional, quickly identifiable, and universal.  Because, sometimes, I just don’t feel like explaining my entire medical history since no one has ever heard of what I have.

Best I can tell, there does not seem to be any universal symbol of invisible illness or invisible disability.  There are some for individual situations–such as hearing impaired or blind–but nothing for a general “my body just does not work right.”  I really like this one:

But A) the image was intricate enough it did not work well as a small image on a business card and B) it still used the wheelchair, something that not everyone with invisible illness and disability uses.  Thus, I made my own.  Working with symbols that already had widely known meanings, I decided to put the Rod of Asclepius (not to be confused with the Caduceus) into the widely used signs for Man and Woman.  I probably could have just used the Man symbol, as it seems to be the default, but as a woman with an illness that most often affects women, I just kind of liked the idea of a gender specific one.

I spent a lot of time trying to decided whether to use the Rod of Asclepius or something else.  I even focus grouped it on a couple of my chat groups.  While not all invisible disabilities are thought of as “medical” in the same sense that most invisible illnesses are, it seemed to me that a lot of them were at least biological in nature.  Thus, I felt that Rod of Asclepius was the most representative symbol that was widely recognizable.

So, a little paint action later, I had my symbol.  I made one for both Invisible Illness and Invisible Disability, as I know some with chronic illnesses have issues with the “D” word (I know it took me a long time to embrace it).  I made generic ones, both man and woman.

And later made versions that also include mentions of specific conditions so I could continue to raise awareness for both my condition and invisible disabilities/illnesses in general.

I keep the ones I have made on my Pinterest page, and have posted a few of them here.  While I don’t ever expect them to receive wide-ranging recognition, anyone who wants to is free to use them in hopes of conveying their situation to others.  They are available free of charge for personal, non-commercial use.  Any other uses, please contact me first.

Also, if you are interested in a sign with a disease or condition not already available on my Pinterest page, please feel free to message me or comment below, I would be happy to make it for you.

30 Things You May Not Know About My Invisible Illness

So, this week in Invisible Illness Awareness week, and there is a 30 things meme that has been going on for a couple years.  I find these interesting and like to read them when it comes around each year.  So, this year, I have decided to throw my hat in the ring and do one.  It is probably a bit different that many others, for reasons that will probably become obvious once you read on.  But I hope it helps me as well as helps others, since many people seem to get a real sense of peace and purpose from sharing their story.  Not sure if I will continue blogging after this, I guess I will just have to call it as I go.  Anyway, here we go

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is: Autonomic Dysfunction, also called Dysautonomia.  Specifically Neuro Cardiogenic Syncope (NCS), Inappropriate Sinus Tachycardia (IST), and suspected POTS (Postural Orthostatic Tachycardia Syndrome).  Basically, my heart rate and blood pressure are all over the place.  I can feel dizzy and lightheaded one second, like I am having a panic attack the next.  Many other symptoms too numerous to list, so you will just have to google it.  Also, Endometriosis—which causes mostly pain and crazy hormones.  More are potentially on the way-Docs still trying to figure it all out.

2. I was diagnosed in the year: Endometriosis was 2003, first accurate diagnosis for AD came in 2012, more coming in since then.

3. But I had symptoms since: Endometriosis since 1995, Autonomic Dysfunction since 2011

4. The biggest adjustment I’ve had to make is: Letting others do things for me, stuff I used to be able to do myself.  I have to have my husband carry anything heavy.  I have to let other people drive me.  I have to ask some else to go get things out of the basement because stairs and I are now mortal enemies.  So many things I used to do myself, but now have to ask for help with.

5. Most people assume: that there is nothing wrong with me and that I am just anti-social.  I have told very few people about my problems, and I instead I will just miss an event, or suddenly slip out early, etc.  I will probably be rather quiet and sitting in the back, where I can make a quick escape if necessary.  Almost no one realizes that the reason I am not chatting is that doing so can make me light-headed, or maybe I am trying to use controlled breathing and focus to bring down my heart-rate.  Or my endometriosis is flaring, and it feels like every muscle from my chest down is cramping.  Or if I have gone Hyper, that the smell of your food, or the bright lights, or the level of noise is high enough to send me into sensory overload.  And while not classically painfully, sensory overload is still very, very unpleasant.  Generally speaking, very few people know how to spot the signs this is going on–a particular chest arching when I get a run of tachycardia, a slowed movement from pain or muscle weakness/fatigue.  Generally, I just get  lumped into either I’m mad or antisocial.

6. The Hardest thing about mornings:  I hate mornings, with a passion.  Mornings are on my hit list, along with stairs and bending over.  It takes a couple hours of meds and hydrating to get me physically up to doing anything–and that is on a good day.  I would prefer that I never do anything until at least noon.  Trying to get ready and out the door against an early deadline (early church, school drop off, etc.) is one of the fastest ways I know to trigger an episode.  Go too hard too early, and you will at minimum ruin the rest of the day, and at worst spend next several weeks trying to get it back under control.  My problems with mornings are one of the reasons being able to work a job is such a problem.

7. My Favorite Medical Show:  I use to really like House, but I don’t watch it or any other medical show anymore.  House becomes a fair bit less fun to watch once you start recognizing the diseases they are testing for, because you have been tested for them too.

8. A gadget I could not live without: My laptop/ipad.  My laptop is on its last leg, poor thing, but we somehow keep putting it back together.  On bad days, my laptop/ipad is pretty much my only connection to the world, and my only thing to do for entertainment (we are cord-cutters).  And when bad episodes can mean you don’t leave the house for over 2 months, that connection to the world becomes pretty important.  Plus, it has allowed me to connect with other AD and endometriosis patients, which has been invaluable.  I have only once had a chance to meet others in person that have AD, and it was incredible.  But there are so few of us out here in the Midwest, using the internet to find each other is about all we have.

9. The hardest part about nights are: Probably the insomnia.  The insomnia SUCKS.  It can be a true insomnia (once did not sleep for 5 days) or it can be an inability to get into a deep, restful sleep so you end up feeling like you did not really get any sleep.  And when you are up, unable to sleep, you have lots of time to think about and contemplate how your life has changed and an uncertain future.  Sometimes the silence can be overwhelming.  But, at the same time, if I have gone hyper and the noise, smells, and lights are uncomfortable, night is usually the only respite.  So it can be a double edged sword.

10. Each Day I take 7-9 pills and vitamins.  I have prescriptions for many more, but I try not to use them unless it my condition has really hit the fan.

11. Regarding alternative treatments: I use compression hose, eat lots of salty stuff and have to drink 2-3 liters of day of PowerAde/salted water.  I need to find the special exercise program for AD that I have been hearing about.  I have not really tried any other alternative treatments, but would not necessarily be opposed.

12. If I had to choose between an invisible illness and visible illness:  Yeah, this is a hard one.  They both have their pros and cons.  When you have a visible illness, at least people believe you, and I imagine you get faster treatment, because they can figure out what is wrong with you.  But, because it is visible, everybody knows you have it, and I imagine a lot of people define you as an illness before a person.  With Invisible illness, it can be very hard to get people to believe you (including doctors) and, if it is a rare disease, you can spend forever just trying to find some relief from it.  But, sometimes you can also “appear” normal, and for a little while pretend that your live a “normal” life.  I am not sure I can answer this one.  Being on the invisible side, of course the visible side is greener.  But if I went over there, I don’t have a lot of faith I would not think the invisible side is greener.

13. Regarding working and career:  Yeah, I used to have one of those.  Currently do not, and not sure I ever am going to again. And I have doubts that if I got back to working, it would ever be more than part time.  On good days, yes, I could probably hold a job.  But you just never know when a bad day is coming or how many bad days you are going to have in between good ones.  Combine that with my affinity for mornings, and your result is unemployment.  How do you hold a job when uncertainty is your reality, especially in this competitive job market?  I need to learn some sort of trade—sewing, wood working, etc.—that I can do at home on my good day and try to sell it esty or something.

14. People would be surprised to know:  I carry a lot of guilt.  I did not cause my illnesses, but I feel guilty never the less.  I don’t feel heroic and brave for facing this.  I feel broken and defective and like I am a burden to those I care about most.  I feel guilty that I make my family miss good times.  I feel guilty I make them take off work to drive me to the doctor.  I feel guilty money we need for a new car or a house down payments goes to my doctor visits, medical procedures, and prescription drugs.  I feel guilty that on bad days I cannot even clean my own house or take care of my own kid.  And I know I should not feel guilty—I would not feel resentment if the situation was reversed and I was helping them—but I still feel guilty.  Then I feel guilty for feeling guilty.  It is a vicious cycle that does quite a number on one’s confidence.

15. The hardest thing to accept about my new reality has been: Letting go of the picture in my head of what my life is/was supposed to be and accepting the uncertainty.  I knew how many kids I wanted, the house I wanted, the career I wanted.  I had a plan for when I would have it and what I needed to do to get it.  My path was in front of me, and I knew what I had to do.  Yeah, pretty much all of that has gone out the window.  I don’t know what my future is; I don’t know if I can have more kids, or even if I can, if I should.  I don’t even know if I am going to be around long enough to see the kid I already have grow up.  I don’t know if they will ever figure out everything that is wrong with me, or if I am destined to watch life pass me by.  I JUST DON”T KNOW.  And uncertainty can be a real bitch.  When the rug has been pulled out from under you, you look to family but also to the things you had hoped and planned for in the future.  A light at the end of the tunnel, so to speak.  When you are not even sure what light is waiting for you at the other end, it is real easy to lose your sense of direction.

16. Something I never thought I could do with my illness that I did:  I don’t really have one for AD yet.  But for the endo, I was able to have a child, which I was told might not be possible.  It was a horrible pregnancy, but still worth it.

17. The commercials about my illness: Bwwhahahahahahaha, that is a good one.  I am lucky to find a DOCTOR that has heard about autonomic dysfunction, let alone a commercial about it.  And endometriosis is a women’s disease, so of course it is pretty much ignored.

18. Something I really miss doing since my diagnosis:  Um, everything?  Working, exercising, taking my kid to the park, vacations, shopping, caffeine, alcohol, being able to go out by myself, doing what you want when you want it, housework (yes, even housework), and many more.  Some are permanently off limits, some I can do on good days, but cannot on bad days.  But it forever looms over you; is this going to be a day I can do it, or a day I watch from the sidelines.

19. It was really hard to give up: Control.  I admit I can be a bit of a control freak.  I have always been a take charge, do it yourself type person.  I am not sure I would consider it healthy, but I always kind of had this belief that failure was the result of not trying hard enough.  This is a belief that is very incompatible with having a medical condition like Autonomic Dysfunction.  With Dysautonomia, your body is in control, not you.  It does not matter what you have planned, or how bad you want to participate—If your body says no, the answer is no.  Trying harder, in general, is probably just going to make it worse. You can’t get around it; it’s just the way it is.  You just have to let it go—and this has been very hard for me to accept. I am still working on mastering this.

20. A new hobby I have taken up since my diagnosis is: umm, pinterest?  I have tried to make a few things I found on there, but not sure that really counts as a hobby.  Still need to find a hobby I can do.

21. If I could have one day of feeling normal again I would:  My first inclination was to go hiking in the mountains, as there is a place I really want to visit in Colorado, but likely can’t due to the elevation.  But, in reality, it would be to spend all day playing and being active with my son.  Play soccer with him, ride bikes, run around the playground.  He is so energetic and I wish I could keep up.

22. My illness has taught me: You have to be your own advocate.  If is far too easy to get lost in the system.  It may not make you the ideal patient, but it is better than suffering more than you have too.

23. Want to know a secret? One thing people say that gets under my skin: There is the typical “you don’t look sick?”  Or the “you just need to get out/exercise/eat better etc.”  That is always fun.  Or the accusation that you are faking/exaggerating/have psychological problems.  But, generally, I think it comes down to the awkward way many people treat you they know you have a serious chronic illness.  It tends to fall into certain categories:  treat you like your made of glass, pity, fake concern (usually followed by above advice or their own illness story), or the polite inquiry where a response other than “I’m fine” was not wanted.    This is why, in general, I don’t talk much about my problems.  It changes the way people talk and relate to you.

24. But I love it when people: treat me like normal person who has a few quirks, but don’t make a big deal out of it.  And people who can anticipate what I need without making me ask for help—they are my favorite people in the world.

 25.   My favorite motto, scripture, quote that gets me through the tough time is:  I am open to suggestions on this one.  I guess my current favorite would be It’s Okay to not be Okay as long as you are not giving up. 

26. When someone is diagnosed I’d like to tell them: educate yourself and reach out to other people that have your illness, in person or online.  Also, believe in your gut instincts and don’t let anyone else convince you otherwise.

27. Something that has surprised me about living with an illness is: It can bring out both the best and the worst in people.  It is kind of amazing.  Some people will be so great and so understanding.  And other will be judgmental, inconsiderate, and downright mean.  Having an invisible illness, you get a chance to see people’s true colors when they interact with you.

28. The nicest thing someone did for me when I wasn’t feeling well was:  My family is very good about helping me when I am not well.  My parents give up their day off to come clean my house, my in-laws letting me move in for a few days since there were no doctors for me to see in our home town, hubby taking over kiddo duties.  However, I think the one that meant the most was when my mother took off work and drove down to our town so that she could take my son to the tumbling class we signed him up for but that he was going to have to miss because I was not well enough to take him.  I suffer from profound feelings of guilt that my being sick punishes my son.  The fun stuff he misses because I can’t take him, stuck inside with me because I can’t go outside in the heat, it goes on and on.  It is one thing for an illness to screw up your life, but it is another thing when if messes with your kid’s life.  It makes me incredibly upset when I cause him to miss out, and her coming down so that he did not have to miss out means more to me than I can even explain.

29. I’m involved with invisible illness week because: I would like more understanding for people that suffer from chronic illness, and more awareness that my particular diseases exist.  But I also hope it is somewhat cathartic for me as well.  Chronic illness can be very isolating, especially when you keep what it does to you from the world.  I hope sharing some of it will help me overcome some of the issue I have dealing with and accepting my own limitations.

30. The fact that you read this list makes me feel: Honestly, pretty self-conscious.  I have kept pretty much everything about my illness that I could a secret.  I desperately want to pretend life is like what is was before.  But it is not, and I have to accept that.  And keeping it to myself is not helping anyone, most notably me.  I spend a lot of time feeling like a burden, and a large part of me does not want to burden my loved ones more by letting them know the full extent of what I deal with.   I want to be known as a person before I am known as an illness. I don’t want the first thing people know about me to be that I have limitations.  I don’t want to accept that this is my new reality, and telling people makes it real.  I guess you could say I am still working on the acceptance stage.   I read so many blogs of people with the same illnesses I have, and they seem like they are much more accepting and at peace with it than I am.  It gives me hope that I will eventually reach this level of enlightenment.  But I am JUST NOT THERE.  And I have not seen a whole lot of stuff out there from people who are angry, depressed, lonely and having a hard time accepting their fate.  I think we keep a lot of this to ourselves.  So I guess this is for all of the people out there who are in the same place I am—with their shit completely and totally not together.