Did I Or Didn’t I?

Please note: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The Saint Paul remarked upon the sheer volume of medicine that he could see displayed in my bedside drawers, something that started with “Wow.” I told him that the one drawer that was open as well as the bottles on the surface were only the half of it and that the other two drawers were filled as well. Of course, I don’t take them all every day; some I keep because I know they might come in handy later. Truly, though, I go through about 45 pills per day thanks to my prescriptions and supplements.

The makers of PillSuite (http://pillsuite.com) were kind enough to send me their product to give it a whirl. I received a sorter, two rolls of sealable baggies and a sealer. 2016-03-27 11.40.02I chose to load up my midday pills, which are only about seven in number but are the largest in volume. When I looked at the sorter, it seemed like the compartments could only handle these seven, and I was right.

The baggies are biodegradable and can be written on with any sort of note you choose to write; I recommend a fine-tip permanent marker.
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After you snap the lid onto the sorter, you flip it over so the funnel lines up into the open end of the next plastic baggie to load up the dosage.
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There was just enough room to get these horse pills into this baggie, just like there was just enough room in the compartment.

Next, the open edge of the baggie is pushed to the back of the sealer and the big button is depressed for 3-5 seconds, which seals the baggie shut with a fine line. The red indicator light shows that the sealer is working its magic and closing off the baggie.
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After that is done, both ends are completely sealed, and your meds and supplements are ready for transportation.

When you are ready to consume them, there is a perforated end that can be easily torn open.
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Here are some advantages to using this product:
1. You bet I like the fact that the baggies are biodegradable! I’m always worried about how much I consume and add to the demise of our resources because it’s not easy for me to do things that able-bodied people take for granted. Check out this episode of In Sickness + In Health podcast (http://www.insicknesspod.com/blog/2016/3/8/23-when-sus).
2. I can write anything I want to on the baggies. I can indicate the medication names and dosages, or I can indicate the time of day the pills should be taken, or I can remind myself to take the contents on an empty stomach an hour before eating, etc.
3. This is a great product for traveling. Sometimes I have appointments that require a lot of time for me to be away from home, and it would be a lot easier to slip one of these baggies in my purse than it would be to take a pill sorter or an actual bottle (or seven) with me. This would be pretty handy for a short trip as well. The only time it wouldn’t work is traveling outside the country; TSA requires medications to be in their original prescription bottles when traveling outside the U.S.
4. This takes the mystery out of whether you have missed dosages or not, especially if you have scripts or supplements that are taken 3-4 times a day or you have to stagger everything according to a full versus an empty stomach. I have yet to see a pill sorter that has enough compartments for all of my dosages.

One disadvantage for me? My evening dose of meds and supplements actually adds up to about 25-30 pills and capsules – the seven that you see here, plus a bunch more, depending on how I am feeling. I would actually have to fill two compartments in the sorter and therefore two baggies for the nighttime dosages.

Ordering additional “suites” as the baggies are called is impressively inexpensive from http://store.pillsuite.com/.

Ch-Ch-Ch-Changes

I’ve been laying low for a few weeks. Actually, that isn’t quite right – I’ve had to put on makeup nearly every day and wear a bra and be polite and make sure my pants aren’t falling off of my ass every time my name is called and I stand up because of non-stop appointments and activities. Most of the time it’s exhausting because my brain is being smushed like people have sent over a few of their puppy-monkey-babies to sit on my head and bounce around a little. At the end of each day I’ve had very little energy to do much else than watch my TV boyfriends Jimmy Fallon, Trevor Noah and Larry Wilmore on Hulu.

My uncle’s memorial service was Monday. There was quite a large turnout – something in the neighborhood of 300 people, I think. It was lovely and sad, and especially tough to see pictures of my aunt and my dad on the slideshow that was run during the service, who preceded my uncle in death by 20 years. Every single one of us cousins on that side lost a parent at a very young age. Thankfully there were a few funny stories and pictures to break up the sadness.

About a month ago I went to a session at a health crisis center where a musician brought his guitar and we had a little singalong activity. It was nice to sing – it’s one of my favorite things to do – and I have a decent voice, and I met a woman who seemed to be fairly friendly. The thing about the crisis center is that people attend whether they have physical illnesses, mental illnesses, or both; this woman happens to have mental illnesses, though I didn’t know it when she started talking to me. She gave me her number and said she would be interested in getting together because she wanted to expand her friendship circle.

Well, I didn’t know it at the time, but “expand” really meant that she wanted to make A friend. One. Me.

I had new orders put in for nerve impingements in both my left shoulder and right hip, so I’m going to PT twice a week now. Besides that I have other appointments for counseling or additional doctor appointments at least once a week, including an EMG for my head and face tomorrow morning. I’ve still got the tremors going on in my legs from being upright so much.

I didn’t realize that the lady didn’t fully expect me to actually call her, or that I was the only one polite enough to give her the time of day. However, slowly as she cornered me on the phone day after day for a few hours at a time, she revealed she had some issues with obsession and stalking, including the fact that a man who attends her church has a restraining order out on her. At one point she told me that she thought that he was trying to be friends again; what did I think? I told her that he might have been polite, but she should keep her distance. I finally told her that I can’t talk on the phone every day. Now she texts me every day and asks if we can go and do stuff like shopping. I tell her every day that I have appointments and it’s really difficult for me to be running around all of the time. Now I’m at the point where I’m going to have to be firm and tell her that I just don’t have the energy or health to be her one and only friend. I’ll let y’all know if I come home to some rabbit stew and her standing in my bathtub with a knife.

I have been working on making the changes to my diet to make it anti-inflammatory, and that includes experimenting with ingredients. Today I made crispy chicken, which was breaded with garbanzo and fava bean flour (okay) and coconut flour brownies (eh), and I’ve determined that coconut flour and my esophagus do not mix. I’ve tried three different recipes that are coconut flour-based and they burn going down every time. I don’t think it’s a true allergy because I don’t get hives or asthma, but it’s still unpleasant enough to stop trying to make it work.

Four doctors now at the University of Minnesota have told me that they don’t think I have late stage Lyme, and they’re not quite sure what I have. No one can figure out why the hell I can lay down and make the CSF move away from wherever it’s pressing on my brain and I can open my eyes again. I talked to my PCP today about the possibility of getting my shunt removed completely since it’s not draining properly anyway and it’s just causing me pain now. It will probably be another six months before I will be able to go under the knife for that one since I first have to jump through the hoops for the pain doctor. I finally got the letter for the NIH Rare Diseases unit from my PCP and started that process tonight. Now I’m back on the rare disease boat.

Last, and most exciting:

I am no longer on OKCupid. I mean, yeah, sure, I was getting some really nutty stories to pass along (and I certainly haven’t told them all yet), but it’s because The Saint Paul really is worth it. The Saint Paul is close to my age, never married, no children, heart of gold, helpful, accommodating, matching sense of humor, curious, well-read and liberal. He supports my feminist stances and most importantly does not view my body as “his” space, as so many men still do with women. We had the best first through fifth dates, the last one involving him taking me to his favorite animal shelter so I could pet kitties. (I brought a shirt in a plastic baggie that I could change into so I wouldn’t contaminate my jacket on the way home.)

Stay tuned for further developments on the love front.

New Diet, New Rules

I made the tastiest dinner tonight: chicken, carrots, ginger, garlic, brown rice flour and chicken bone broth, simmered and thickened so I could have it over brown rice.

What was missing? The dreaded dairy, gluten, soy and sugar, now possibly permanently banned from my diet. But let’s face it – those things are pretty difficult to avoid when going out to eat. Luckily I have my pocket-sized computer (phone) with internet access because there is a new app on the market that will help take the pain out of trying to socialize over a meal that may or may not be okay for me.

DineSafe is free to both the patrons and the restaurants. To participate, restaurants have to enter their menu items, which might sound labor-intensive, but here’s the great thing: they can put directly on the app which allergenic ingredients are included on each menu choice. I mean, who better would know which ingredients go into their food? This takes all of the guesswork out of the equation for the patrons.

For instance, maybe you are allergic to dairy, shellfish and mushrooms; the first thing you will be prompted to do when you enter the app is plug in all of the items you are allergic to. They have such a great list pre-programmed in, including dairy, peanut, gluten, garlic, soy and eggs, that most of the common allergens are available to choose. There is also a tab for specific diets, including vegetarian, vegan, paleo and organic. The creators did not skimp on categories! They are open to suggestions, so if you think that your allergen or diet are not represented, you can give them the feedback. I didn’t see sugar on the list so I’ll be giving them that suggestion. Sugar can hide out in simple things like salad dressings, and I’d like to make the most informed choice possible when someone else is preparing my meal.

The app can search for nearby locations according to your GPS position, but you can also ask for it to look in specific areas (great for when you’re meeting other people out and you’re trying to find a suitable restaurant). After all, most cultures have socialization built around meals; there’s no reason a person should have to give that up because of some restrictions.

The next step is to visit the restaurant on the app. The landing page has a pull-down menu that is a space where the restaurant has described its theme and atmosphere. You can go to an area that indicates which menu choices you should avoid. If you hop over to the next tab, you can see which items are safe for you to order. Lastly, there is an area to customize your order: if a dish contains mushrooms but everything else is “safe,” you can request no mushrooms on your order. By the time you are at the table and the server is ready to take your order, you’re prepared with a choice rather than having to quiz the server and send him/her back to the kitchen a few times. There is a flashing reminder on the landing page to advise the server of the allergies so they can expect a dish to be returned to the kitchen if something is included by mistake. (This leads me to another thought: Is there something in the point of sale terminal that the servers can enter to call attention to allergies for the kitchen staff, even if something like “Attention: Allergies” pops up in red above the “hold” items?)

I feel like we are overdue for an app like this. Right now I see listings for the Orlando, Florida area. What’s the best way to make sure restaurants are getting on board in your city? Load the app on your phone and talk to restaurant managers about the advantages of making their menu information available online including known allergens and diets, and consumers will feel empowered about choosing their products.

The app will also have an area built in where patrons can enter reviews. Part of my research on where to spend my money is influenced by reviews, as I’m sure the majority of people feel the same way. Now we’ll see things like, “I ordered a dry, unmarinated chicken breast, and I got exactly what I wanted,” or “We had to send the dish back three times because they kept putting peanuts on my pud Thai.”

Lastly, the U.S. is very slow about getting on board with safety – basically it’s up to patrons to be detectives and figure out if something is safe for them to eat. The UK and Europe have already passed laws regarding requirements to disclose allergens in sit-down and take-out establishments. We SHOULD have those laws here, but for now, we have to rely on our pocket computers to guide us. I look forward to using DineSafe when it reaches my area.

****This is a sponsored post for DineSafe.
******I was excited to talk about this app and its features anyway because my life is going to change drastically as a result of having these restrictions placed on my diet.

Serenity with Serenitea

I think anyone who has been reading my blog for any amount of time knows that I believe in a marriage between the hard-hitting Western medicine and the holistic approach of Eastern medicine. I am open to trying a long-term approach to feeling better if the problem is nagging vs. one that takes me down swiftly and completely. Right now I feel like the fatigue and bad sleep are more of a nuisance because I have bigger and badder things going on.

The company Premier Bioceuticals has various products to support certain areas of life, and I tried both the FibroCane Daily supplements and the Serenitea tea.

First, the FibroCane Daily: The label states that it is formulated to help “quiet symptoms associated with pain, stress and fatigue.” For the short amount of time I was taking it, I did notice a boost in my overall energy. Almost halfway through my bottle I had to have the ingredients evaluated by my naturopath because my entire regimen was revamped after I received my Lyme diagnosis. The FibroCane Daily has all kinds of good things including vitamins B12, C and D, but I was going to be receiving therapeutic doses via my naturopath’s plan, so I had to discontinue it. Especially with vitamins that are fat-soluble (B and D) and not water-soluble (vitamin C), you have to make sure that you don’t take in too much – they can build up in your fat cells and create a health crisis on top of what you are already dealing with. The water-soluble vitamins like C can be flushed out of your system with the rest of your waste in your urine so it’s more difficult to overdose on those.
Here is a copy of the label:

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The label is actually quite small in real life, so I had to request a digital copy so I could enlarge it for reading. Always consult a healthcare professional when you are adding to or changing your plan.

Second, the Serenitea: This is also a “FibroCane” product geared towards assisting to ease restlessness and promote relaxation. It states that it’s “Non-GMO, Organically Grown, Gluten Free, Caffeine Free.” This is an herb tea blend that includes holy basil, cardamom, chamomile, peppermint, rooibos, and even some stevia to sweeten it up for consumption. The best way to extract the most essence is to dunk a bag in about 8 ounces of boiling water, and then cover it and let it steep for 10 minutes. (Warning: Any tea left to steep for longer than recommended, whether it’s this product or any other brand, may result in a bitter taste – adios that bag when the time is up!)

The dietary changes I am making under great protest (no dairy, gluten, soy or sugar) have made me leery of anything that is supposed to be “supportive” to my system – because usually that means that it tastes like hair coloring chemicals or shoe leather to me. However, this tea is quite pleasant, and I very much appreciate the addition of the stevia to soften the taste of some of the herbs. It certainly is a nice way to wrap up the day, though I still tend to have squirrels romping through my brain – I guess there’s no tea for that yet!

You Are Not Alone

It was such a beautiful day – partly cloudy, unseasonably warm. Such a beautiful day that our uncle’s soul could not be contained by the body that was failing, so he took his last breath at 9:00 a.m., sharp. He was never really one to sit still for very long anyway.

My brother called me last night. I had already taken my last dose of meds and had stumbled into my pajamas, when he said, “Chels, you need to get here. He’s here at the hospital and he’s not going to make it through the night.” I clawed out of my pajamas and hurriedly put my clothes back on, and then called my sister. I knew as soon as I heard her voice that she would not be able to get out of bed because she was sick as a dog. She was heartbroken and asked me to say goodbye for her.

Texting with my brother, I advised him that my cab was on its way, and he told me that our uncle was not responding. I started shaking. I tried to remember to put random things into my purse, including my phone charger and my favorite cough drops. I put on extra deodorant (though I knew I was fighting a losing battle on that one – I sweat like crazy when the fluid builds up in my brain like it has been for the last 9 months while I’m upright).

After what seemed like an eternity, but was really only about 20 minutes, the cab arrived. He asked me where I was going. I told him the facility. He asked me how to get there, because he had just moved to the area from Phoenix. Great. The blind leading the blind. Then on the way he had to stop for gas (but he kept the meter running, saying it was at a “reduced rate”). I couldn’t believe it. I was crying and trying to explain to him that I wasn’t sure if I would make it to the hospital on time. Then he started quizzing me on how old my uncle was and if he was sick for long. I’m not new, I know where this line of questioning leads: some stranger-danger jackass is going to tell me that he lived a long life (a week and a half short of reaching 65) and that if he was sick a long time, then I shouldn’t be sad.

But I am sad. You see, my uncle and I missed out on two decades of knowing each other. When he found out I was sick, he began slowly reaching out to me. But before that, we had had no contact. Twenty years ago, his brother – my dad – died, and as people do when they endure a major life event like that, we acted our worst. First, we fought over what Dad should wear to be buried. Whenever he wasn’t working, Dad was in either pajamas or very grubby outdoor clothes, and we kids and our step-mom said we wanted Dad to be buried in his (very nice) favorite pajamas. Our uncle put his foot down and said he should be buried in a 3-piece suit, because otherwise, what would their clients think? (Dad and our uncle along with their close friend owned a successful business.) I told him that the funeral wasn’t for the clients. Eventually we settled on the favorite pajama pants and a nice shirt.

Second, our uncle took me aside and told me, “I know I wasn’t very interested in you when you were growing up. I figured you didn’t really need me because your dad was so involved in your life. Now that he’s gone, if you ever need advice, you can come to me.” I was 22 at the time and already had been living away from home for about 5.5 years, so I felt as if he really missed the boat on being part of my life. Mostly I was hurt that he admitted what he thought about me. I was raw from dealing with the sudden loss of my dad and had no support like everyone else who was there and paired up like they were going on Noah’s Ark – no boyfriend and no spouse. I did what I had perfected long ago, and that was to shut down emotionally. 19 years have passed since we buried Dad and I moved around the country.

Slowly last year my uncle’s messages started to trickle in. He even made a donation to my YouCaring page to help me with expenses during my Magical Medical Mystery Tour. When he found out I was moving back to Minnesota, he asked if we could spend some time together. So the week after all of my belongings arrived and were still taking over my living room/bedroom, we squeezed a chair in between the boxes and the wall so that he could talk to me while I laid flat on the bed. I was mid-sentence in giving him a generic update on what was happening with me when he grabbed my hand and said while fighting back tears, “I’m sorry. I’m so happy to see you.” 

Now that I’m 20 years older and have contemplated life, death and illness, it was all I needed to hear. I repeated his words back to him. He leaned over from the chair to hug me tight and we cried. It’s the crying that you do when you see life with such clarity and you know that your time is limited. It’s the crying that you do when you’re not afraid of death but you are afraid of not being able to make wrongs right before it’s time for you to shed your body. He had stage IV squamous cell carcinoma and didn’t know how long he had until he could no longer function. We managed to have a few more visits before Christmas; after Christmas, he developed pneumonia and was sentenced to bed rest and constant care by his new girlfriend.

Last night a group of people hovered around his hospital room, all red-eyed and occasionally sadly smiling over the sharing of memories. I thanked his girlfriend for taking such good care of him; she went home to rest. Eventually the visitors dwindled down until it was my brother and I, our cousin and his best friend, our uncle’s ex-wife and our uncle’s best friend/long-time business partner. My nighttime meds were kicking in and making me extremely sleepy and I desperately needed to lay down to take the pressure off of my brain, so someone very kindly set up a cot for me in the family waiting room. My brother opted to sleep in the chairs. Everyone else stayed in the room with our uncle. I figured that we would hear sometime in the night that our uncle had passed.

I woke up and stumbled to the community bathroom and tried to make myself presentable. My eye makeup was smeared to raccoon status. My deodorant indeed was a huge disappointment. I stopped pretending to care and instead made my way to our uncle’s room. Surprisingly, only the best friend was there watching over our uncle – my uncle’s son, his best friend and the ex-wife had gone home to change clothes and make sure the dog was taken care of. My brother was still asleep in the family room and so the best friend/business partner went to get coffee while I stayed at my uncle’s bedside.

I used my time with him to sing. Sometimes it was impossible to get the notes out because the knot in my throat strangled me with grief. He wasn’t conscious and was fighting to take in air while he slowly drowned in his lungs. It was painful to watch because our once super-fit uncle had fluid pooling in his abdomen and lungs, prompting him to keep his mouth gaping open while he worked just as hard to push the air out as he did to get the oxygen in. Singing was all I knew to do because I felt helpless – I was coming into this process late and didn’t know what his wishes were as far as pain control went.

When my brother and my uncle’s friend entered the room, they both were concerned about the amount of work it was taking for my uncle to try to get air into his lungs. He seemed to be clenching his fists a bit and his shoulders were also working themselves forward and back in an effort to try to take in oxygen. The three of us decided that we wanted him to be comfortable, so I found the nurse and asked her if we could get assistance with pain medication. We talked about the effect that upping his meds would have on him, which was mainly depressed breathing. I was concerned that our uncle’s son wouldn’t make it back to the hospital in time. My sister and her husband were also trying to get there to say goodbye. But we went ahead and had the orders changed so our uncle could receive his meds more frequently to aid him in dying in comfort. We didn’t know when that would happen, because he survived another night when he should have been gone, really.

The nurse gave him painkillers in his IV and some drops under his tongue; he seemed to settle down and labored less to take in air. I stepped out of the room for about three minutes to make a phone call. When I returned, his color had changed completely. Our uncle was taking in small, shallow breaths, and his skin had taken on an unnatural tone of yellow with underlying grey. My brother held one hand while I held the other, and our uncle’s friend stayed at his feet. We all told him we loved him, we all wanted him to feel no pain, and it was okay.

I watched the pulse at his neck as it slowly ebbed like a far-off ripple on a lake. Finally, I put my fingers to his carotid and confirmed there was no pulse. The friend went to the nurse’s station to call the nurse and resident into the room. Our uncle had left, to join his mom and dad, his brother and sister, and probably my sister, as well as countless other souls who were no longer caged by their bodies. No more pain, only flying free.

My dad (L) and my uncle (R), playing around with their mom’s pantyhose. 

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But I’m A Nice Guy

I have grown to dread this self-proclamation: “But I’m a nice guy.” In fact, I have grown to develop a specific distaste for OKCupid profiles that are like “Niceguy4U” and “niceguy69” and “goodguy98787.”

Why? Well, if someone has to keep telling others that he is “nice” or “good,” it’s likely he’s not. The key is to get past the words and watch the actions. 

For about a week I was chatting back and forth with a guy who claimed he wanted a real relationship. His screen name was something like “Love4You” – red flag right there. We messaged for a few days and then he asked if we could text, so I agreed and gave him my phone number. Then he asked if we could get on the phone, so we chatted that way. He told me it was really great to talk to me, and that he felt at ease with me, and that thinking about me and our conversation made him smile. I thought he was really friendly and enjoyed our conversation too.

We made a date for last Saturday, but it fell through because he had to have work done on his truck. He suggested we make a date for the next Saturday. Between that afternoon and this evening, we spoke on the phone a few times, and we texted multiple times each day. Mr. Nice Guy said that he wasn’t interested in sexting at all. I told him that I thought that was refreshing. I also told him – multiple times – that I don’t want to talk about anything like that until after we met, because it puts unrealistic expectations on us when we do meet for the first time. He agreed and told me he was much more interested in sharing his life with someone – specifically, me – and he was already talking future plans, like what he was going to cook for me and where we could go, even with my physical challenges.

Again, through all of this, Mr. Nice Guy repeatedly told me that he liked my sense of humor and that he smiled when he thought of me. He told me that I had a very positive attitude. I told him that I was looking forward to our date on Saturday. He said he was too, that he thought we’d have a great time.

Another red flag: On Tuesday (Super Tuesday for voting!), I got a message from Mr. Nice Guy saying, “Can we meet Sunday instead of Saturday? Busy day.” I told him that would work for me, and he thanked me. This was the second time in less than a week that he changed the date.

We had gotten into the habit of saying good night every night. On this particular night, I told him sweet dreams, and asked him what he would like to dream about that night. Mr. Nice Guy answered, “You.” I said, “Thank you. Where would you like to go in your dream?” He said, “In my dream with you?” I said, “Yes. Pick a place and we’ll go there. I’ll see you in your dreams.” He said, “In bed.”

I didn’t see this right away because I was still trying to change for bed as well as wash my face and brush and floss, so he noticed the big pause and said, “Too direct?” When I saw his messages, I said, “Didn’t we say we weren’t going to go there at this point?” He said, “Yes very sorry.” I said, “I just don’t want to jump the gun.” Mr. Nice Guy said, “That sounds good to me. Falling asleep” and he ended his text with a very enthusiastic smiley face. The trouble is, he didn’t go to bed. OKCupid showed him logged into the system until 9:40 pm, later than our interaction. That reeks of looking for a piece of ass, in my book.

The next evening I sent Mr. Nice Guy a text greeting him by name and asked him how his day was. He answered, “Very busy. Had a 5 minute lunch. Stayed 45 minutes on overtime. Gonna get much more busy.” And then he said, “Good night” – at 7:45 pm. You bet your sweet ass he was logged on for a few more hours on OKCupid.

Then at 6:05 pm tonight, I got a message that said, “I met someone. Good luck in your seach” (bad spelling included).  How did I respond? “Nice.” How did I want to respond? “You’re a dick” would have been appropo; so would have “You’re a fraud.” I mean, for someone turning 50 in a month, you would think he would have the manners and integrity to be truthful with me and call me instead of texting this ridiculous made-up story. I am pretty sure that’s why he’s still single.

I have his number and messages blocked on my phone and I blocked him from seeing my profile or messaging me on OKC. However, I can still see his, and he was logged on for three and a half hours this evening. With as quickly as he wanted to move to chatting on the phone, Mr. Nice Guy’s claim that he met someone is obviously false because he’s still trying to hook up with someone.

A couple things could be happening here:

1) Mr. Nice Guy really does just want sex and is not interested in a relationship;
2) Mr. Nice Guy is still married;
3) Mr. Nice Guy is embarrassed that I turned him down;
4) Mr. Nice Guy is pissed that I turned him down.

Whatever the reason, that’s one less man-child for me to raise. Mr. Nice Guy isn’t so nice after all.

 

Travel Realistically In Your 20’s

I’m a gypsy at heart. Anyone who knows just a portion of my story always asks, “So what brought you to _______?” My answer is always, “Me.” With the exception of this move back to Minnesota to be crazy ill, I have always driven my choices – I never waited for something to be decided for me. If I set my heart on a destination, I went. I moved without knowing a single person at my chosen location. I moved without having ever visited prior. I moved with a bag of clothes, a music collection and an air mattress.

Understand that 20 years after my friend and I took our road trip around the U.S. and camped for a couple of months, the economy was much more stable than it is now. But also, for being 20 years later, the gas prices are hella affordable.

My advice if you decide to move or travel, for what it’s worth, is: 1) Be prepared to live minimally. Decide what is truly essential. Forego your mani/pedi. Pare down your electronic subscriptions. Stop buying more clothes. Don’t go out to eat and instead learn to cook well AND creatively, because that is going to save your ass when money is lean. I have survived for months on $10 a week for groceries. 2) Work multiple jobs. This will give you extra cash to save up (or pay off bills) that will afford you more travel money. It also makes you a MORE VALUABLE employee. People often ask me what I do, and my answers for the past 20 years have always included an “and”: I am an escrow assistant AND box office representative. I’m a software trainer AND a legal proofreader. Again, have a variety of skills, even if it means that you know how to assign seats for a performance at a theater as well as answer phones and direct calls, because that will save your hide. 3) Research the area you are interested in visiting or moving to. Search ads on Roommates.com and Craigslist.com to get an idea of whether rents are affordable in that area AND if there seems to be an abundance of rentals in your price range. If the rent seems steep, everything else is going to be as well. 4) It’s perfectly normal to be afraid. The best way to dial down your fear is to plan and research. 5) Don’t just talk about it, live it!

I can tell you, with all of my heart, that I regretted nothing – even when I had barely enough to pay bills – because I was in charge of my life and my choices.
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I honestly can’t stand all of the articles I read that are like “You’re in your 20’s! Quit your job and open up an ice cream shack in the Bahamas!” or “Don’…

Source: Travel Realistically In Your 20’s

Now You See Me

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis

Don’t Ever Think ‘Equality’ Is A Dirty Word

We need women (and MEN) from all walks of life, from all occupations, from all age groups, to get on the bandwagon with the idea that equality is worth it. Already my nephews, aged 10 and 6, have started reciting the ugly words, “Boys are smarter than girls.” They certainly didn’t learn that from me or their parents. Now our work is even harder with trying to turn that thought process around (if it is even a process – because they are more parrots at that age than scholars).

I want all girls and boys to grow up to appreciate differences while embracing each other for their value as human beings first.

I want women to receive equal pay for equal work.

I want men to stop claiming all space as their own, including women’s bodies.

I want women to be supportive, rather than see each other as competition to be beat.

But in addition to that:

I want people who are labeled “disabled” to be out in the work force (if they are able) and have a social life filled with inclusion, and to be portrayed correctly in advertising, TV and movies.

I want “inspiration porn” to end.

I want the freedom to practice – or NOT practice – any and every religion of my choosing.

I want churches to start paying taxes.

I want people of ALL races to be valued, truly, but I want privilege to be acknowledged and then driven to extinction.

I want our actions to match our words.

I want choices, whether it’s the company I keep, the job that pays the bills, the food I put in my body, the chemicals I keep away from my dwelling and the doctors I see. The more we work towards total inclusion, the better our lives will feel, period.

http://www.huffingtonpost.com/entry/jennifer-lawrence-feminism-equal-pay_us_56d08bfee4b03260bf769e58?

Dude, You’re Stepping On My Personal Space

I wrote this article for Patient Worthy on February 14th; since that day I got daily (sometimes twice daily) texts from this guy saying, “Good morning cutie” or “sweet dreams cutie.” The most recent ones – because he still won’t stop – say “Just got to my hotel” and “How are you?” For the life of me, I can’t figure out why he would bait me with the hotel remark because that one really came out of the blue. I haven’t traded texts with him since February 10th. Was the hotel text his clumsy attempt at a booty call? Or was it not intended for me, and instead should have gone to whomever was playing the part of his dirty little secret?

Dude, just…stop.

Boundary Waters and Dating Boundaries