We’re Breaking Up

“There’s plenty of fish in the sea.”

Are there, though? I want someone who really listens to me and understands where I’m coming from, who sees me for who I am and not who they think they would like me to be. I’m sure they wish I would lose a little weight, or dress a little better. Maybe they wish I would talk about something else besides always going back to my rare disease. But I can’t, because it rules my life.

I’m talking about my doctors, of course. They keep breaking up with me – or at least, it feels like it. And this is incredibly difficult as a rare disease patient.

The first one to jump ship was my primary care doctor. To be honest, I was a little relieved. I had had a difficult time landing her in the first place – other doctors writing things in my records such as “Munchausen’s” – but most recently she had told me to stop looking for a solution and to just accept it, and that there probably wasn’t anything really wrong with me. She had seen my MRI and claimed that she didn’t know enough about the brain to make a judgement call about what she was looking at, but JFC, even I could see that if all of the big, cavernous spaces are gone and the corpus callosum looks like Charlie Brown’s hair swirl, there’s a problem. Anyway, hers was the first letter to arrive on the University’s letterhead.

The second was my pain doctor. I knew about his desertion ahead of time because we talked about it during my last visit with him. He worked it out so I can remain his patient at his next office. HOORAY. I don’t have to train in another doctor. I like him. We have mutual respect. But I still got his letter on the University’s letterhead and an official-sounding offer to continue my care there with someone else, if I wanted. (No, thanks.)

The third one was my mast cell disease doctor. This one is actually extremely devastating. I felt quite lucky to have found him and to have gotten my diagnosis, and then to have been under his care for about a year. The problem with this disease is that it was only named about nine years ago, and so not much is known about it. I probably fit into a different subcategory from a lot of people because my CSF and dura have been affected.

The mast cell disease doctor is relocating from Minneapolis to New York. His goal is to further his research; he will make himself available to any doctors who reach out to him with questions. He will also see patients on a cash-only basis: $2,000 each for the first two visits, then $650 for each visit after that. 

I can understand why the mast cell disease doctor would want this type of arrangement. He would not be at the mercy of insurance companies. He could run his office and research with full autonomy and receive complete compensation for his time, rather than having to negotiate contracts. And he’s not a young guy; I’m sure he’d like to reduce his own stress in the gloaming of his years.

Specifically, these are my barriers: 1) I’m on Medicaid, so I’m unable to go outside of the state of Minnesota. I’ve tried many times, and each time, the petitions have been turned down. It doesn’t matter how rare my disease is. 2) I can’t find local doctors willing to take me as a patient. Believe me, I have tried. I’ve sent them info ahead of time (per their request), I’ve gone in without giving them any hint, I’ve brought all of my records with me, I’ve bargained with them, I’ve promised not to be a nuisance, I’ve answered all of their questions…bitch, please. Any way that you can think of to convince someone to become your partner, I’ve done it. 3) I don’t have any way to save up money. My earning power is gone – it’s not like I can go to work and take my bed with me so I can keep the pressure off of my brain. I’m using up every last bit of my savings for living expenses while I wait for my disability hearing, which I believe will be in the next six months, so that’s three years guaranteed without a cent of income.

What happens if I don’t receive care? Well, it’s going to get ugly. My chest, arms and face have been covered in hives for the past month. I was supposed to get another prescription last week, but that was abruptly dropped mid-process. This is a crazy disease. Other patients constantly go into anaphylactic shock. I haven’t gotten to that point, though I sometimes have sudden shortness of breath, or lose my voice because my throat becomes suddenly raw. Unfortunately, for me the allergies continue to get worse and stranger, also a common factor in this disease. I won’t even go into the brain stuff, except to say that I know it’s being strangled too.

I can’t adequately describe what it’s like to have a rare disease to people who don’t have one, especially when it comes to finding medical care. I’ve had a fibromyalgia diagnosis since I was 23, and those of you who have chronic illness may have an inkling, but this is a completely different ballgame. I got a diagnosis last fall but have been sick since birth (and I’m 43 now). I only figured out a month ago myself – MYSELF – why I needed 10 shunt surgeries. There are no other documented cases like mine.

If I can put this in perspective, imagine that your child is one in a dozen in the world who has Progeria – the disease that makes children age prematurely, so that they look elderly as infants and young children (and they come with a plethora of underlying maladies). And imagine that there is only one doctor in the world who is an expert, so every child with that disease is going to that doctor. One day, that doctor is killed in a motor vehicle accident. Then there is no one else to treat those children.

That’s what it feels like right now to have my mast cell disease doctor break up with me. The disease affects more than a dozen people, but to actually find doctors who can and will treat me is impossible. I think it would be easier to ask a man to have a baby naturally. 

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Give Me A Break

On Thursday afternoon, I saw my 59th doctor, a neurosurgeon. At least, I think he was #59. I don’t feel like going back in my previous posts to make sure. I could be like that person who doesn’t want to admit that their birthdays keep happening so they claim to be 29 & holding.

The ride out was long. The conversation with the cabbie was lively. His name was Isaac. I found out he has a wife and five children who still live in Uganda. He goes back every 6-8 months to spend time with them when he has saved up enough money. I can’t imagine having to live like that, my loves living half a world away. He told me about the worst job he ever had (digging pits that were 20 feet deep, 16×16 wide/long with a pick ax and then having to haul away the dirt himself because there was no machinery). The pits were for storing water. We talked about what shocked him the most when he moved to Minnesota the first time, which was snow (before global warming kicked in, the state used to get dumped on so that sometimes the snow would be thigh high) and teenage pregnancy (in his culture, girls would live with their parents until they were married and they never spent time with boys until the marriage happened). We talked about how violent men are towards women in the States, and how women are so accommodating and undemanding of the men, as in, “It’s okay if you don’t work. Here, lemme make you a sandwich and buy you a house.” See? Lots of sharing.

In my appointment, I first talked the physician’s assistant through everything and demonstrated how my symptoms disappear when I tilt my head parallel to the floor. He asked if I had seen the one doctor I had asked to see, and I said I hadn’t. He asked why, and I said, “Because he said there wasn’t anything wrong with me.” The PA couldn’t hide his bafflement. He said it was obvious that my ventricles were completely gone. He did a few of the standard neurological tests like having me squeeze my eyes shut, follow his finger with my eyes, push and pull his arms, etc. Then he went to get the neurosurgeon.

The neurosurgeon came in and after our introductions, he said he had talked to my neurologist. He mentioned that they thought I was overdraining, and I shot that down immediately. I told him that my lumbar puncture came out with a high opening pressure and I hadn’t had anything surgically done since then. I also told him that I had a leak for an entire year so I know the difference between overdraining and underdraining and they are completely different sensations. For me, the underdraining always brings vertigo, fatigue and the facial droop. Overdraining will never bring paralysis for me; instead, I get the tire-iron-beating-me-in-the-skull pain. 

We talked about the fact that there hasn’t been new shunt materials in ages. We talked about the near-impossible task of finding materials that I won’t be allergic to since I’ve had so many already and I’ve reacted to them.

We also talked about the mass that’s growing on my right side. I asked him if it was at least possible to take that out. I’ve been having pain on the right side that radiates down my neck, and if it’s killing brain tissue and turning it to jelly (which it is according to the MRI), then I’d like to get rid of it. However, because of where it is – in my cerebellum – it’s in a bad spot for a craniotomy. As of November it had grown to about the size of a quarter (not sure what size it is now). 

The neurosurgeon doesn’t want to operate on me at this point. He wants to repeat the upright MRI in about six months to check the size of the mass. He expects it to interfere with my coordination; it might be what’s causing my legs to jerk uncontrollably right now.

So, that’s the plan. Follow up in six months. No surgery right now. Wait for the mass/tumor to get bigger and my symptoms to get worse.

Luckily the same cab driver drove me back – he stayed nearby so it wouldn’t be a long wait for me, thank goodness. The office was really way out in the middle of nowhere by city standards. But the ride back was completely different. Isaac was trying to get me to talk, but I couldn’t. I was overwhelmed and upset, and trying (but failing) not to cry in front of this total stranger. It was just a few sniffles, not an ugly cry, thank goodness. 

That evening I got home and received a notice that my primary care doctor is leaving the practice (and maybe even the state). During our last visit in March she had tried to talk to me about palliative care, but said she would wait for me to decide.

Just so I don’t lose my mind, I have to stop pursuing another opinion on the neurosurgery side for the time being. I’m getting a lot of well-meaning advice about how I should just “stay strong” and “keep going” and “don’t give up.” Honestly, though, I’ve been going at this for nearly seven years. This isn’t fibromyalgia, which I’ve had for 20 years – and I’m not knocking anyone who has it, it’s a beast; and this isn’t Hashimoto’s, which I’ve had for 12 years and again I’m not trying to put anyone down, but this is a whole new level of sick. I was able to work through that shit, even if I had to sleep after work and sleep through weekends. My brain is literally being crushed and I have a mass that’s growing in my cerebellum. There aren’t good days and bad days. I need a break from having to be my own advocate for this really rare orphan disease as I drag my sick ass around from neurosurgeon to neurosurgeon to try to convince them that what they are seeing is real (because it’s right there on the MRI).  

In the meantime, I have plenty of other things to keep me busy and other doctors to visit. We just won’t be tapping into my skull right now.

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Bring It On(line) – Trusting PatientBank With Your Medical Records

I have purchased some awfully pretty, recycled 3-ring binders to haul around my most relevant medical records to my doctor appointments. They’re intimidating because they’re large and they’re many. I also have my own laser printer/copier/fax in my tiny studio apartment. It was the single-most best score from when I lost my job – my former employer let me keep it as my consolation prize, of sorts. But for the love of all that is holy, I cannot carry all of that with me to every appointment. But I need it all! One doctor told me that they have 1,200 pages in their system from only the last 6.5 years that is a combination of what they have logged themselves, and what I have given them.

This is where PatientBank comes in. Disclaimer: I have been given access to PatientBank.us 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.

When I received this assignment, I was encouraged to have this company request as many and as much of my medical records as possible. Little did they know that in the last 6.5 years I had seen 57 doctors in 2 different states and who knows how many disciplines (I think 8? Possibly  more). Now, I had just gone through quite a lot of nastiness getting some records because I’ve been trying to get disability as well as go through the process of getting my case looked at by the Undiagnosed Diseases Network through the NIH, so I had had an influx of records shortly before this opportunity.

However, I didn’t have a lot of the records from the past year and a half. The Undiagnosed Diseases Network wanted to go back 10-20 years prior, and my attorney had gotten some records sent directly to him for the more recent stuff, so I figured I could still give PatientBank a pretty good run. I created a login and password at PatientBank and the first logical place to go for new users is to create a new request:

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In this case, I’d like to request a copy of my records from a doctor in Minneapolis, so I can search by his/her name and the state. If his/her name is in the system, I can choose it in the menu. If it isn’t, there is an option to add it.

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After you choose the correct physician, you can specify the date you visited, and whether or not you want “sensitive” info included. If you are not sure what sensitive info means exactly, you can let your mouse hover over the blue text and the black text box pops up and explains what might be included.

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Then you click on “Add to my order.” I got the pop-up screen with a prompt to sign to release my records. Here’s where it’s really, really tricky, folks. I have a touch-screen laptop. You might get pretty good results if you use a smartphone/iPhone. This pop-up window gives you the instruction to “click and hold down to draw.” But if you actually have a mouse in your hand, it’s going to look nothing like your signature, and you’re going to have a really hard time convincing your doctors and hospitals to release your highly sensitive info.

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What happens while you wait? You can see your pending orders under the menu item “Requests.”

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You will also get periodic emails from PatientBank that state in the subject line what’s happening with your request. I really tried to get a good variety of requests going – some hospitals, some large group doctors’ offices, some very small doctor’s offices. The email subject lines would vary from stating that they were still working on my request to the request was successful. There were a couple that had failed. The suggestions regarding why they had failed were that it was possible that I 1) hadn’t been a patient there; 2) it had been too long ago and the records were destroyed; 3) my date of birth was wrong, or 4) my name didn’t match. (I laughed because none of the above applied to me, especially because other doctors referred to my visits to those doctors and they were recent visits.)

At one point I had accidentally requested records from an individual doctor as well as from a large system that took care of his records, so when I received his records as part of the large bundle but still received emails stating his records were pending, I attempted to use a pop-up chat to ask that the individual request be cancelled. Unfortunately, an entire week went by and the chat was not responded to. I resorted to emailing the company and received a response. 

When I started seeing successful results rolling in, I went to check my records. When I clicked on “View” next to the entity that sent records, nothing happened – I just got a blank page with a cloud in the background. I didn’t think this was behaving quite as it should be, but I’m quite click-happy and I got around it for the time being by actually clicking on the button labeled “Download” at the top of the page that is meant for saving the document directly to a drive or computer. I started this process in the month of December, 2016, and now in February, 2017, everything is functioning as it should, so it seems that this is no longer an issue.

I had the opportunity to speak to Kevin Grassi, MD, the Co-Founder and Chief Medical Officer of PatientBank just a few days ago to go over some of the finer points and challenges of the system. The communication issue with the chat has been resolved and shouldn’t be a problem now, though I haven’t had to use it again, so I can’t confirm. Kevin pointed out that the system has the capability of patients uploading documents so that we truly can have everything in one place (!) – because let me tell you, I have about four discs that I’m tired of keeping track of weirdo passwords to. However, a limitation to that right now is that actual films/scans can’t translate on PatientBank. (If you’ve ever played around on patient portals and been lucky enough to look at CT scans or MRIs, or been in an anatomy class where you can virtually strip a cadaver down to the bones, you will understand how much power is needed for imaging – and then, you know, multiply that by millions for patients…)

An option that Kevin posed to me was the possibility of sharing records. The sharing could be anonymous; the option could be to only allow doctors to look at a patient’s records in case they would like to find similarities for other cases, or the other option would be for patients to find each other. I let Kevin know that I would opt out of both of these. I could really dive deep into why I immediately clench up at the thought of either and both, and right now, this is the best explanation I can offer. First, I have a deep distrust of doctors at this point. Two of the records that I got back from my initial requests included such gems as “I suggested Tai Chi but patient was non-compliant” and “patient is bragging about her surgeries and has Munchhausen’s” (after only seeing me for 20 minutes – and now we know that my brain has literally collapsed and I have a tumor). Second, I am not a big fan of getting into support groups with other patients. Sometimes it turns into a situation where we all end up trying to defend ourselves and our symptoms and the way we feel, and sometimes we all end up really depressed.

One of the features that I really like is that I can actually email a link of my documents to my attorney directly from PatientBank. The University of Minnesota bundle, which I think covers something in the neighborhood of about 8-11 doctors (I gave up counting), is about 250 pages. I have the option to fax directly from PatientBank too, but good grief, why would I?! I’m gonna send the link so my attorney doesn’t fire me!

Kevin assured me that other features will be added in the coming year, so I look forward to trying them out. Technology in healthcare is here to stay and PatientBank is doing a great job of navigating the future.

Visit: PatientBank

How Much Do I Owe The Swear Jar This Time?

A couple of weeks ago I got the last of my fillings repaired as part of the bigger, year-long, multiple visits to the dentist that were caused by me clamping my jaw in my sleep because of the pain in my shoulder and abdomen. I also had to make sure that they marked in my chart that I had slit ventricle syndrome and the tumor because they love to tip me waaaaaaaaay back in the chair and it really messes with the pressure in my head.

There was a mixup with my appointment and they got me back much later than my start time, which caused me to have to call my transportation to pick me up later; unfortunately, transportation had to leave me until 2 hours after I was done, which caused the fluid to build up a lot, which means I was hella uncomfortable and my vision was cut down quite a bit. But before that, I had a weird/comical/maddening exchange with the staff in the back.

I require four times the amount of numbing medication because my sodium channels don’t process pain meds correctly. Both of the teeth we worked on were in my upper jaw, so I ended up being numb up to my forehead. When they sat me up after I was patched up, they told me I could walk to Walmart down the road (as if! No way am I giving them my money!). I said no. They said I could then walk somewhere else. I again said no. They asked me why. In the best way I could with a very numb tongue/lips, I said, “I can’t theecuz oth wuth wrong with ny vrane.” The assistant, who was none too bright, said, “WHAT’S WRONG WITH YOUR VEINS??” I said, “No. Ny vrane. Vrane.” And I pointed at my head. The assistant dentist asked what was wrong, and I said, “I can’t do anyfing vat vill nake ny vlood mressure go umph. I cood have a stroke and nigh.” The assistant dentist asked what the doctors were doing to help. I said, “I can’t fine anyvun who vill take ny case. I’n lergic to da shuns. I need to fine stuff I wone vee lergic to.”

Then the dental assistant piped up and said, “Well, I don’t blame the doctors. I’m sure they don’t want to feel bad if it doesn’t work out for you.”

I shot her a look and said, “I cood die wifout helf. Da pressoo keefs goin’ uf in ny head and if I can’t get sunfing in to work, it vill kill nee.”

Without hesitating, she said cheerfully, “Well, I can see both sides.” Like we’re debating whether to have fish or chicken, instead of whether or not it’s better to kick the bucket to spare doctors’ feelings. She stuck with her “too bad for you” attitude.

At the end of December, my case was referred to the top neurosurgeon in the Minneapolis/St. Paul area after it was discovered that my brain had literally collapsed under the pressure, as well as started growing a tumor from the scar tissue that was left in from a previous shunt that is now about the size of a quarter. I know he got the radiology report that listed all of my symptoms. I know he got the impressions from the neurologist because he seemed to answer her question about whether I’m overdraining.

His reply was that my brain was fine and the tumor was no big deal. He also said the shunt isn’t overdraining. Now I’m not allowed to see him either. 

Here’s the deal: I know I’m not overdraining. If I were, I wouldn’t have high opening pressures every time they do a lumbar puncture. The overdraining assumption is strictly my new neurologist’s misunderstanding of slit ventricle syndrome – she’s trying to make my symptoms fit, instead of paying attention to what’s going on. Second, the brain tissue around the shunt and the tumor is turning to jelly. This isn’t normal and it’s a big deal. Third, the tumor is causing measurable cognitive damage. Fourth, and I’ll show you pictures, but my ventricles disappeared, and my brain has literally collapsed.

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I have new insurance that started on February 1st that comes with an advocate and a care coordinator, so I’m waiting for them to contact me, which is the norm. I smell a lot of research in my future for trying to figure out what I can try for the next shunt system, and I’m not looking forward to it, but I also know no one else will do it but me.

This is a Test

Another chronic illness blogger has been kind enough to let a bunch of us tell our stories on her site, and late last week my most up-to-date info was included. She has indicated that she may discontinue the series if she no longer has parties interested in being part of the project, but there are so many of us out there that I would be surprised if the well ever dried up.

From This Point. Forward.

Today was a really big day in my little alien world. I finally got the upright MRI that I’ve been asking for for 6.5 years. In all of the 56 doctors that I’ve seen, it has only been the most recent neurologist who hasn’t fought me on my request and put the order in.

So I got strapped into a chair and a cage was lowered over my head and screwed into place like I was Hannibal Lector. Like I was ready for some football and to call out some huts! I was sandwiched and squished between two huge, white panels, a bar propped between the panels for my hands and then one lower for feet to rest on to make my very own roller coaster ride more comfortable.

A couple of times the tech buzzed in and said, “I’m picking up movement. Try to keep very still.” I had explained to her that I sometimes have trouble with tremors in my neck when we were going over the questionnaire, but maybe she’s heard that line before and doesn’t think it’s important to remember. I breathe with my diaphragm, so at a break between segments, I moved my arms as far away from my torso as far as the sandwich bread slices would allow me – that way there was less of a chance that my smushed arms would move my head when I breathed.

The tech had given me the option of tilting the chair back at 30-45 degrees, but I explained that it would compromise what we are trying to catch on imaging, so I had to stay completely upright. The MRI takes about 40-45 minutes, and to make sure the pressure in my skull was really high, I exercised my arms for about five minutes both before the cab picked me up, and then again when I changed my clothes. All I have to do is mimic the bicycle motion with my arms like what I do in PT and I nearly go completely blind from the pressure in my skull. This is why I can’t exercise. I would probably give myself seizures.

At the end of it when I was extricated from the face trap/sandwich boards, I got up to walk and ended up stumbling around like a cat coming off of anesthesia. I had to have a lot of assistance to walk back to the room where my cane was waiting for me. I might have said, “No, I don’t need a fucking walker.” This scan had better not let me down.

Geneology and Truth

American history isn’t just something we learn about in school—it’s also something we carry in our genes. That’s one insight offered by a new study in PLOS Genetics on how slavery and African-American immigration patterns have shaped the contemporary demographics of the US. The study, which examined the genomes of 3,726 African-Americans, found differences in…

via African-American genes show how slavery and the Great Migration shaped the US — Quartz

Rare + Rare = Still Rare

Yesterday was generally a non-productive doctoring day for me. I went to see a neurologist in a different medical system outside of the ones that I have tried just to see if I could at least get an acknowledgment that what I’m dealing with is not that idiotic label “facial weakness” that the U of MN doctor put in my file. Besides trying to work towards a diagnosis, I’m also trying to build my case for disability, and I keep hearing my attorney’s voice in the back of my head saying, “If you don’t get a diagnosis by the time you are sitting in front of the judge, you’re screwed.”

The neurologist was very friendly and open, and definitely had the approach of working with me as part of a collaboration rather than dictating to me. However, we still had a breakdown in communication. She could not wrap her brain around the concept about why I have a shunt in the first place (and indeed is the same barrier for 99% of the doctors I talk to even though I explain to them that the shunts were placed because my symptoms improved temporarily after receiving lumbar punctures 12 hours apart). Almost all doctors incorrectly jump to the conclusion that my face is drooping because I’m overdraining – as if the fluid is pulling my face down with it, like I am living out a Salvador Dali painting. It’s easier for me to explain the shunts and the failures and the symptoms to people who have absolutely no experience with this world because they have no expectations and no preconceived notions (except for the asshole armchair “experts” who don’t know shit but think that watching a few episodes of “House” have made them suddenly intellectually superior).

Because this doctor had wonderful bedside manner, I made sure I took the time to assure her that her inability to give me a diagnosis or a direction was not her fault or a failure on her part as a physician. As a matter of fact, she was doctor #50 in six years, and I told her that too. The combined look of horror and chagrin was a bit comical. I gladly accepted her recommendations for a pediatric neurosurgeon (because sometimes they take the most complicated adults) as well as a rheumatologist she thought would have the best bedside manner, so all was not wasted on that visit. I also explained to her that I would be attending the national hydrocephalus conference June 16-19 being held here in Minneapolis and that I had t-shirts printed:

This week another one of our relatives passed away. His niece happened to contact me through 23 & Me, where I have an account set up after getting my genes tested last July; I wanted the cheapest way possible to get them set up in a database while I tried to figure out what is going on with my body and just how rare it really is. It turns out that this relative of mine has a daughter who is also super rare, truly one in seven billion! It’s so rare that they actually had to formally name it: Hemolytic Anemia Medicine Lake. The “Medicine Lake” portion of the name refers to the area that I and a large portion of my extended family grew up and lived in in the western Minneapolis area. Unfortunately it’s not in any way similar to what my problem is so I can’t go to the NIH and tell them to link our cases, but we definitely hit the rare disease lottery in this family.

By the way, universe, I’d like to win the LOTTERY lottery.

And I won’t be going back to this neurologist, as nice as she was, because she described herself as a “neighborhood neurologist.” She said that she was a step or two down from the facilities where I had been trying my luck, and this was way over her head.

Pat, I’d Like to Solve the Puzzle — Patient Worthy

One Thursday night, I was completely emotionally wiped out. There was something that went down in my family and I spent that evening on the phone and in tears. I’m not going to go into detail; I feel like it’s not my story to tell. I had as much pep as a wrung-out washcloth. I…

via Pat, I’d Like to Solve the Puzzle — Patient Worthy

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