“Why Can’t She Work On Dialysis?”

I never expected to be on dialysis by the time I was 30, but here we are. I’ve been on dialysis for almost two years and quite frankly not a single second of those two years has been easy. You see, it may seem easy on the outside. You may think I’m “lucky” because I don’t work and you may wonder what I possibly could be doing all day. You may pass judgments on me because you don’t understand why I’m not doing more since I look so “good.” But looks can be deceiving.

Right before starting dialysis, I was actively working two jobs. I worked full-time as a chef and production manager as well as part time in retail. I was on my feet for almost 12 hours everyday as my kidneys were failing. I would leave retail shifts with my feet so swollen they were spilling over the top of my flats. Every night, I’d wake up about 3-4 times to pee and at least once to throw up because of this intense burning nausea I’d get regularly. I was constantly tired from the lack of sleep. I’d get incessant cases of hiccups that would be super painful and last for hours. I had to be extremely careful about how much potassium and protein I ate and had extreme food aversions which made eating in general hard. I was constantly thirsty because of the toxins that continued to build up in my body. I was too proud to start dialysis when I needed to, because I was afraid of the judgment that would be passed on me by other people. “Why can’t she work on dialysis?” is a common question I’ve heard, generally not asked directly to me, but asked about me to other people. And I know if it hasn’t specifically been asked, it’s been thought which, as someone who has been an extremely hard worker my whole life until my health took a turn for the worst, truly hurts my soul. Our society places our entire importance on productivity, so when you become an unproductive member of society, you’re judged harshly regardless of the circumstances. And that caused me to push myself longer than I should have.

When I started dialysis, most of those symptoms went away, but a whole slew of new ones started. I am not waking up to pee 3-4 times per night, I’m waking up or just not sleeping in general due to insomnia. I developed a whole different set of food aversions now and have to be aware of how much protein, potassium and phosphorous I’m consuming as well as making sure I’m taking my binders. I now have to give myself Aranesp injections so my body can make red blood cells, as it’s no longer doing so. I have to severely limit my fluids despite the fact that I’m always thirsty and like drinking water. I am deeply fatigued and struggle every single day to complete the most basic of tasks, like keeping up with the housework and taking care of our pets. I developed a uterine issue that resulted in the growth of a borderline tumor that caused damage to both ovaries so they had to be removed and now I’m on hormone replacement therapy for life. When I do decide to push the limits and try to have a normal day, like visiting family or taking a trip to the beach, I pay for it. I legitimately am so exhausted for at least two days after and have to recover in bed for most of each day. My body is actually shutting down as each day passes, and I’m only going to continue to feel worse. Yet as this is all happening, people are still asking “Why can’t she work while on dialysis?” “What does she do all day?” As if surviving isn’t hard enough work. Not just physically, but emotionally too. Having your ability to have children taken away from you at 30 years old because of your disease is a pretty big pill to swallow in itself. Trying to come to terms mentally with feeling your body deteriorate is even harder.

I’ve only just listed the medical side of my life and I’m already exhausted and overwhelmed. On top of all of this, I still have to live my life. I still wake up every morning (these days after my dialysis treatment) and make breakfast for my partner and get his things ready for work. I still feed the animals and let the dog out. I still make myself my meals, go grocery shopping and shopping for household essentials, do the laundry, drop and pick up the dry cleaning, clean the house, make sure the trash and recycling are taken out each week, etc., all while making time for my doctors appointments, dialysis supply orders and doing dialysis treatments every single night. On severe fatigue days, I have to physically push myself to do these things because as we all know, life goes on even if we feel like we can’t get out of bed. I also now make self-care an absolute priority, so getting outside for small walks or just to sit and observe nature have become crucial parts of my survival and maintaining my mental health. My life hasn’t stopped just because I’m on dialysis, so this idea that I am sitting around doing nothing in the meantime couldn’t be further from the truth.

Not many people can endure what I endure every day. Not many people know what it’s like to have your dreams limited by your physical health and they end up taking their good health for granted. If you are someone who has wondered why I can’t work while on dialysis or what I do all day, realize the questions you’re asking say far more about you than they do about me. Your self worth is wrapped up in productivity and you are projecting your fears of not being adequate enough onto me. I don’t fear not being adequate, I fear of dying while on dialysis and not getting to live my life to the fullest. If you can wake up everyday without that fear, then count your blessings and be grateful you’re not someone who can’t. 

Health Insurance Woes; A US Story

I wanted to take this time to touch upon one of the biggest issues I’ve faced since embarking on my journey for a transplant: health insurance. I touched upon my initial problems with my health insurance in my last post, and wouldn’t you know, in typical kidneykt style, I already have more insurance issues in 2019!

Some of you may not be aware, but in the United States, we have something called an “open-enrollment period” and during this time you must sign up for healthcare coverage  or you will not be covered for the following year. It was November 1st – December 12th nationally, but some states extended the end date until December 31st. This is strictly for buying your own policy through the marketplace if you are not eligible for one through your employer, or other avenues like Medicare or Medicaid. For me, I need a second policy to cover additional medical expenses not covered by Medicare and to be listed for transplant, so I had to purchase it from the marketplace. I already had a plan I was paying for from the previous year, so I renewed it over the phone with an agent to ensure everything would be all set for the following year and set up automatic payment withdrawals for the premiums.

When I was at dialysis on Tuesday, my nephrologist came over to me with a despondent look on his face and said, “So, I’m disappointed to hear we’re having insurance issues again.” Confused, I asked what he meant and he explained he had been contacted by the transplant team (I hadn’t) who stated they were notified I did not have a secondary policy as of January 1st so they took me off of the transplant list. Of course this was news to me, as I had a few weeks prior finalized everything with the agent for my coverage for 2019, so I really had no idea why this would be happening. I was honestly very upset that I was hearing this for the first time from my nephrologist because at this point, it truly felt like the transplant team really didn’t give two shits about me, so much so that they couldn’t even be bothered to notify me of this immediately so we could try to get this issue resolved. I truly have been nothing but an ideal patient since I started dialysis (aside from the fact that I am still refusing the fistula), yet the transplant team truly has done nothing but treat me like a flaky, incompetent person. I feel like I am being retaliated against for confronting them about their massive mistakes last year when scheduling my transplant surgery which directly led to the surgery being postponed. They refuse to accept responsibility for their errors and are trying to place the full responsibility on me by insisting I told them I lost my health insurance (this never happened) which is why they took me off of the list and needed all sorts of documentation to put me back on it. Though them not notifying me of this new issue may seem like a small thing, for me, it compounded on top of every other bad experience I have had with them (IE: Me being told by the financial coordinator that technically she isn’t my financial coordinator until I have transplant surgery, my clueless transplant doctor telling me that having a partial hysterectomy was a blessing in disguise, the living-donor coordinator asking my potential donor if she’d like to altruistically donate to someone else, etc.) and I decided that I want to look for a new transplant team. More on that later.

I contacted the marketplace (called HealthSource RI here) to try to fix my insurance issues. After about an hour and a half of explaining this issue and trying to get it resolved, they explained they weren’t sure why I was removed from my policy, but they couldn’t help me and they wanted me to contact the Department of Human Services (who I already knew couldn’t help me). I contacted my dialysis social worker (who literally keeps me sane) and she said she had other patients who ran into this issue- there seemed to be a glitch in the system for patients that also have Medicare and some of her patients even had prescriptions that weren’t being covered. Before I was able to look into it further, I got a call from HealthSource RI two days after my initial discussions with them. It was from a woman who basically explained she was calling to sign me up for the plan I had initially, again. This call took all of 5 minutes and she backdated the coverage to January 1st. So essentially, I lost my insurance in error and was then taken off of the transplant list in error, while also being told they couldn’t help me in error as well. Again, this may seem like some simple thing that most people wouldn’t get upset over, but the fact that this even happened created a massive amount of unneeded stress and repeated problems like this that are beyond your control take a huge toll on you emotionally. Now that my insurance issues are figured out, I am going to move forward with a new transplant team.

I still have to make the initial appointment, but I have decided to go to UMass in Worcester, Massachusetts which is about a 45-50 minute drive from where I live currently. This is where my brother had his transplant surgery and continues to see his post-transplant doctors. I truly cannot move forward with the transplant team I currently have at Rhode Island Hospital. I have never felt more mistreated by a group of doctors. I would not recommend the transplant team at Rhode Island Hospital for anything at all. Every single person I have worked with- the dietitian, the social worker, the transplant coordinator, the financial coordinator, the transplant doctor and the secretaries- have been extremely impersonal and cold. Whenever I go to my appointments, it feels as though nobody knows me or even cares about me, especially when my transplant doctor reads my file update for the first time when we’re in the room together. I really am looking forward to getting a new team that I can feel good about working with for transplant.

The most frustrating part about all of these experiences is that if I lived in a country that had universal healthcare coverage, I would have had the transplant surgery almost a year ago now. I wouldn’t be required to pay for two insurance policies in order to be listed for transplant. I truly don’t understand how anyone can be against the idea of universal healthcare, and quite frankly, I believe anyone who is really hasn’t done enough research about it. Not only would switching to a universal healthcare model save us trillions of dollars in the long run (there are many economists and lots of data confirming this), but life expectancy would actually RISE again in our country. Health outcomes would be better because people would be able to get the preventative care they need, which can help eliminate people waiting too long to receive the care they need that can exacerbate medical problems. If people are healthier, then they can actually contribute more to society and help the economy thrive. As I stated previously, I could have had a transplant almost a year ago. Imagine if I had, and no longer needed to be on Medicare AND disability, how much money the government would have saved? Our system is deeply broken, and people like me are at the brunt of it.

I contacted my governor immediately after the issues I ran into this week. I told her my story and explained how much we need universal healthcare here. New York City did it- imagine if Rhode Island followed suit (they have 4x the population!)? If we want these systems to change, we must demand they change ourselves. I am extremely passionate about this issue, and would love to help anyone who is too, contact the appropriate people and let them know that things need to change. If you don’t support the idea of universal healthcare in the United States, then you clearly aren’t paying attention!

The Now

Wow. It’s been quite a while.

I initially started this blog because I searched for similar places before I started dialysis. I wanted to read experiences of other people going through the same thing to try and mentally prepare for the journey ahead. After starting dialysis, I quickly lost the drive and motivation I initially had to document my experiences. I often feel like I just go through the motions of living these days instead of actually living and that in itself can be overwhelming. I see the people around me and their lives haven’t stopped and it makes me feel left out and a little disconnected. I dealt with so many financial struggles this year due to being out of work, along with not having a working car for most of the time, which made me feel a lot worse about myself than I should have. It was a terrible cycle of me feeling bad for not making the same strides forward as everyone else and feeling bad for not doing more. They say that “comparison is the thief of joy,” and when it comes to being chronically ill, that couldn’t be more true. My mind has a hard time accepting the limitations of my disease and I’m trying to not be so hard on myself when I can’t or am not doing the things that I really want to do. I decided I am going to try to write more, but I’m not going to put too much pressure on myself to do it.

With that said, a lot has happened in this past year, so I’ll do my best to recap.

I haven’t discussed this much here or on social media, but I do have a match for a kidney donor. My donor is an incredible person and started altruistically testing to be my match last November.  After a couple months of extensive testing for both of us, we found out she is indeed a match! I feel very blessed that someone would do something like this for me and truly cannot put into words how much I appreciate everything she has done. At the time, I was out on temporary disability from my job and was on my employer health insurance because of that (I also had to pick up Medicare in order to be listed for transplant). My employer was holding my job for up to 6 months and was continuing to pay for my insurance during that time. We initially had a transplant date scheduled for March 19th, 2018. That was almost exactly the 6 month mark for me being out of work, so I asked the transplant team what would happen if my employer couldn’t extend my insurance. I explained I hadn’t spoken to them yet about it and it most likely wouldn’t be an issue (I worked for a small, flexible non-profit company and they ended up agreeing to extend my insurance once I spoke to them since the plan was I’d have the surgery and go back to work once healed). Because I said this, the coordinator I spoke to misinterpreted what I said and assumed I had no insurance, so she cancelled my surgery and took me off of the list. In the meantime, the transplant team requested I call my employer to confirm the insurance would be extended. I did so and contacted the transplant team to let them know it was, but they then decided they wanted written documentation of that from my employer. My employer sent this, but the transplant team didn’t like the wording, so they contacted my employer themselves by phone to discuss the matter further. After the clarification, the transplant team requested another written document from my employer confirming I would still be on their insurance. These exchanges took about 3 weeks and pushed back the transplant date further. Because of this, my donor wasn’t able to donate at that time anymore because of plans she had already made for the summer with her family, so we agreed to hold off on the transplant until after July. For the record, I am very unhappy with the way the team handled this entire situation (and many other things that I don’t feel like getting into, like the living donor coordinator trying to convince my donor to donate altruistically to someone else) and fully blame them for the fact that I didn’t have the surgery in March.

Since the surgery was postponed and I was no longer going to be going back to my employer in the next few months, they were no longer able to continue extending my insurance because quite frankly neither of us knew when or if I’d ever be going back to work. So essentially all of the frustrations we had just dealt with when it came to my employer insurance was for nothing. At this point, I was still on Medicare, but I couldn’t be listed for transplant with just Medicare so the transplant team took me off of the transplant list. I tried applying for Medicaid but apparently get too much from SSDI to qualify, so my boyfriend had to buy a secondary private insurance plan for me since I can’t actually afford to do so myself. I finally had all of my insurance things straightened out by the summer and felt hopeful about things finally moving forward again.

That’s when I found out that I had a cyst in my uterus that I needed to have removed before I could have the transplant. I had been having irregular bleeding off and on and went to my primary care for an exam. She requested an ultrasound and they saw the cyst, but it was quite large at 9cm. She referred me to a gyno specialist for further evaluation, where I had a trans-vaginal ultrasound, and she advised that they weren’t quite sure what the cyst was and it needed to be removed. She did mention some possible damage to my left ovary as well and mentioned they may need to take it, but they wouldn’t really know until they did the surgery. The surgery was potentially going to be done laparoscopically, but if they opened me up and saw the cyst was too large to remove that way, they would have to make an incision and remove it that way. They ended up having to do the surgery with an incision and took the cyst (which was 10cm by now), along with both of my ovaries. They had warned me that this was the worst-case scenario situation before-hand so I was a little prepared mentally, but waking up and finding out both of my ovaries were removed was upsetting. I’m not someone who was even sure if I wanted kids, but not actually being able to make that decision for yourself kind of sucks. I was put on hormones so I don’t go into menopause that I’ll have to take until my body would normally go into menopause. The surgeon advised the cyst they removed was actually something called a borderline tumor and that they needed to send it out for testing to see if it was cancerous. It took over a month to get the results, as they had to send the sample out for a second opinion and they had thought an area looked suspicious. I got the clearance that it wasn’t cancer and was told I could start thinking about moving forward with transplant again.

This brings us to last month. The transplant team reviewed everything with my surgeon and they agreed we could move forward. My donor started a new job during the summer, so at this point, we are at a standstill trying to figure out her time off and how that will work when it comes to the surgery and recovery. We’re approaching the year mark for our testing, so there is a possibility we will have to re-do all of the testing again before we can move forward with the surgery. This journey for me so far has sort of been nothing but road blocks, but I’m hopeful things will work themselves out and we can move forward with everything soon enough.

I’ve only been on dialysis for a little over a year, but it feels like it’s been a lifetime. I truly struggle mentally on dialysis days knowing how much I don’t want to go to dialysis and sit in a chair hooked up to a machine for 3 hours, but have to go anyway because my life literally depends on it. I’m sick and tired of dealing with my dietary restrictions and the frustrations that come with them, like swelling if I drink too much fluid. I’m sick of the nausea I get for no reason that either gives me no appetite or causes me to throw up whatever I eat. It’s so hard to focus on the positives all of the time when there’s just so much negative, but I really make an effort to focus my energy on that. In this past year, I’ve learned so much about not only myself, but the world and relationships around me. I feel closer to certain people that were already in my life, but I’ve also been able to grow new friendships during this time as well. I am truly grateful for all of the people in my life and I’m especially grateful to be with a partner right now who helps me find the joy in life despite everything.

In the meantime, I’m just trying to focus on enjoying the now and finding ways to feel like I am actually living and not just going through the motions. Traveling, eating foods I love (in moderation), self-care, reading, spending more time with the people I love… I realized that we never know how long we have on this Earth, so there is no point in me wallowing this time away while I’m waiting for transplant. My life didn’t end, it’s just different now and I am still trying to get used to this new normal.

Broody Days

When I first started dialysis, I felt very motivated and inspired to share my story. I had been searching for others who have gone through similar stories so I’d know more about what I was about to experience, which helps me cope with new situations. I tried to maintain a positive outlook to help not only myself, but for others to know that you don’t have to let your disease determine your life. But now that 3 months have passed (crazy, right?), I’m feeling myself start to lose that positivity that was helping fuel my motivation. Some days are most certainly harder than others mentally. I’m genuinely always tired, but there are days where I have to combat the tiredness along with depression, which has gotten worse for me and harder for me to keep at bay because of the length of time this has gone on.

I truly believed there was a chance I’d get a new kidney by now. But the days keep passing. And I’m finding more and more people that have been on dialysis for many years, that are still waiting for a new kidney. Having to accept that part is what is so hard mentally- we have no control over our current situation and no control over how quickly we can get better. I know that being on dialysis for 3 months is NOTHING compared to the length of time other people I have met have been waiting. What’s hard for me is feeling like my real life has just been on hold this whole time. I was happily working 2 jobs up until a day before I started dialysis and then my whole world was flipped upside down. I was just starting to build a career in a field that I love (food and nutrition), but had to put my professional dreams on hold in order to get control over my health. But I want to go back to work. I want to go back to working 12 hour days doing something that I love. I know this is all just temporary and I keep reminding myself of that. But knowing that doesn’t make it any easier.

Aside from all of that, dialysis hasn’t been too bad. I still haven’t really had any issues with my new catheter since I had it placed (yay!) and my BP is finally within a normal range. For about a week or so, I was feeling extremely lightheaded regularly and would experience tunnel vision anytime I would stand up to walk somewhere because my BP was low. I have had a few instances during treatments where it was so low (94/73) that they had to do a second saline flush to try and raise it. My doctor decided to take me off of two of my meds on Tuesday- Torsemide and Amlodopine, so hopefully that goes well and my BP will be within a normal range.

I had my final appointment with the transplant team to be put on “the list.” The waitlist in Rhode Island for a new kidney (from a deceased donor) is at least 5 years long. I have been blessed to have a couple people come forward to be tested as a match for a living donor, so I’m hoping that something good can come out of that, but I’m also trying not to get my hopes up too much out of fear that I’m just going to be disappointed because they won’t be a match.

I haven’t really been in the holiday spirit this year either. To be honest, Christmas has been giving me anxiety because I know I can’t afford to buy gifts for all of the people that I want to buy gifts for. And that upsets me because I am the type of person that loves to give. I’m really looking forward to future holidays when I have a new kidney and am no longer on dialysis, so I won’t have to feel like I’m a loser on top of the fact that I’m also struggling to survive.

More to come.

K.

Skin

Not too much has happened since I last updated, but I’ll try my best to recap.
My catheter is still working pretty well. It’s healing pretty well too, though at times it can feel a little irritated if it shifts a bit. Dialysis is still going pretty well too, but the past few treatments they’ve had to lower the flow on the machine from 500 down to 400, as they stated my “arterial pressure” was high. I asked them if they think there is anything wrong with it and they insist there isn’t, so I guess we’ll just wait and see how the rest of the treatments go.

I had an echocardiogram and ultrasound for my transplant workup- this is essentially testing to make sure that I can even HAVE a kidney transplant. I also had to have a pap smear (I know, gross) which came back normal, except for the fact that I have unexplained ovarian cysts. I’ve never had them before, so that’s alarming, and they’re pretty painful. They don’t constantly hurt, but I’ll randomly feel a sharp, shooting pain in my pelvis that can be a little debilitating. There is no treatment for these, as they are benign and essentially I just have to let them disappear on their own. It’s not fun, but I’m dealing.

I’m still out of work, but finally received my temporary disability payments, so I’ve finally caught up on bills which feels so relieving.

NOW FOR YOUR REGULARLY SCHEDULED PROGRAMING-
I decided I want to start blogging about topics that CKD/ESRD patients can relate to, to hopefully let others out there know that they aren’t alone. Today’s topic: SKIN.

As many CKD patients know, your skin is dramatically affected by your disease. As someone who has had relatively clear skin my entire life, the skin changes I have experienced have made me feel self conscious, but I try my hardest not to let it bother me.

BODY: The skin on my legs, stomach and back have lots of little redish dots on them (some people compare this to “chicken skin”) that I believe are honestly lots of little ingrown hairs. For some reason, when the hair has been trying to push through the follicle in these places as it grows, instead of protruding from the skin, the follicle clogs. My skin is also EXTREMELY dry, to the point where it flakes off so much that as disgusting as it sounds, it literally looks like snow falling off of my body if I rub the dry skin at all. I’ve been dry brushing and moisturizing which helps a little bit, but the dry skin is so severe that nothing really keeps it at bay for too long. Before dialysis, I also had LOTS of unexplained bruises that appeared all over my body, but since I’ve been on dialysis those have dramatically decreased. I have started noticing some appearing on my legs though, so I’m hoping it doesn’t get any worse.

Left Leg
Here’s a picture of the fresh bruising and “ingrown hairs” on my legs.

FACE: The skin on my face is the hardest for me to deal with. My skin is really dry and I’ve noticed lots of hyper-pigmentation (dark spots) on my face, that are caused by the buildup of toxins in my blood stream from my failing kidneys. I have lots of black heads and pimples that have been appearing lately, which is not normal for me. Even as an adolescent, I rarely ever broke out, so dealing with the skin of teenager at 29 is a little disheartening. My skin has a grayish tinge and the dark circles under my eyes don’t help either. Luckily, I no longer experience extreme swelling in my face when I wake up in the morning since my edema is under control, so that’s a plus. I wish I had suggestions for others experiencing similar issues- but unfortunately, I don’t have the answers myself. I’m very much looking forward to the day I receive a kidney so these issues will just be a thing of that past.

Face
My face! All the brown spots on my face (and lips) is the hyper-pigmentation I mentioned. My chin especially has lots of clogged pores. Unrelated note- I’ve been growing my eyebrows out for 3 years and they’ve STILL yet to grow in :'[
What kind of differences did you notice in your skin as your disease progressed? Let me know in the comments below.

More to come.

K.

Dialysize

Geez, I haven’t updated you guys in quite a bit!

I did end up needing a new catheter. This time around, the insertion was SO much less painful (I asked for more meds!) and the healing has even been so much better. The worst part of the first catheter was the stitches that were placed riggghht near the muscles in my neck (that you use basically anytime you move your head!). The new one is called a split-cath and seems to be a lot smaller and working much better than the other one I had!

I had switched my dialysis time from 12-4 to 7-11 about a week before I needed a new cath. It is harder for me to find rides to dialysis that early in the morning, but I was willing to do whatever it took to get me back to work as soon as possible. Now that I am not returning until at least December, I asked to be switched back to my old shift. Whoever I’ve told that I wanted to move because it’d be easier logistically for me to get rides there, have responded with the question, “Oh, you don’t feel comfortable driving yourself?” THIS QUESTION GENUINELY BOTHERS ME! I think they think they’re being helpful because they then say things like “Well, you’re young. Our young patients are able to bounce right back usually.” In reality, they’re undermining what it’s like to being going through what I’m going through at a young age. This is very frustrating to me and I’ve already made a promise to myself to tell them that at my next appointment with my kidney care team.

I’m hoping to find more motivation to actually start working on these recipes I keep saying that I’m going to be working on. Some days it’s really hard to find the drive to do anything, but I’m trying to work on a little bit at a time!

More to come.

K.

Cath Probz

I’m kind of stuck in limbo right now. The medicine that they gave me on Saturday for my catheter didn’t help the blood flow at all. The nurses wanted to see if the issue corrected itself somehow at dialysis yesterday, but they still had a hard time getting my catheter to pump properly. So now I have to wait to see what my nephrologist recommends, which is most likely going to be that I need to go back to the clinic that inserted my catheter so they can see what’s going on internally. I’m trying not to think too much of the possible outcomes, but realistically, I’m probably going to need a new catheter. Knowing I might need a new catheter is pretty frustrating because the healing process was painful and it took me almost 2 weeks to get back to living and feeling normal.

Tuesday was my first day on “the early shift” at dialysis because I was hoping to start to prepare to go back to work, but if I do need a new catheter, I’m going to be out of work for longer. If that’s the case, I’m going to request to be moved back to my old dialysis shift since it just works out better for me logistically when it comes to rides and such. I listened to the recommendation of my dietician and “cheated” this past weekend and actually gained some fluid (1kg) because of it. But, I don’t like how I feel when I “cheat” and eat foods that I’m not supposed to, because they make me physically FEEL bad. If I eat something super sweet or super salty, I just feel blah overall and have to chug water and then my stomach feels distended for a bit. It’s just not worth it to me.

I’m trying hard not to get bummed out about being out of work. Normally, I’d be perpetually and overwhelmingly anxious because of bills and financial issues, but I’m really at a point now where I know that those things don’t matter in the grand scheme of things. Bills can be paid eventually; taking care of myself right now is what is most important. I didn’t realize I needed to give my nephrologist a paper for TDI, so that put me back almost a month in receiving a paycheck. I re-applied again yesterday and am hoping that I can get something soon.

My birthday is in about a week and honestly, I’m just not feeling it this year. I actually almost forgot about it until my Mom mentioned it a few days ago, which is NOT like me. I actually have dialysis ON my birthday too. I really want to try doing something nice for myself, but my lack of energy/motivation/money lately might impede that. I do think the weekend after my birthday, I want to try making a trip to Cambridge to try Veggie Galaxy for THE FIRST time (it’s shameful, I know). Food always makes me happy!

More to come.

K.