Foodless In A Food Based Society

Eating has been getting harder and harder for me. Not just physically (and it's really hard physically) but even harder emotionally.

Physically, it's like I just can't do it anymore. My doctors want me to keep trying. So I do. But even my GI doctor wants me to only eat small bites of food only once a day, and honestly, for the most part, that's completely fine by me. Because food makes me so incredibly sick it's not even funny. Long gone are the days where I could stuff my face full of food item after food item. As soon as I'm up to 3 maybe 4 bites I'm completely bloated and stuffed and can tell that it was a bad decision to even attempt to eat, no matter what type of food it was. Like even if it's completely liquid, still the same old song and dance. Pain, distension, heaviness. It's bad. But I still keep trying, because the doctors tell me too. Honestly, part of me is hoping the doctor tomorrow tells me tomorrow to just stop trying for a while.

But then, there is the emotional side. And if you think the physical pain is unbearable. And it is. The emotional side of not being able to eat, in America, especially at the holidays. Is excruciating.

It seems like every day for the past 2 or 3 weeks I've been invited to dinner or lunch or to make something for somebody and it's just not fair. I mean I realize that I can't change America and that at the holiday's there is a lot of family gatherings and there are a lot of meals, but dang son. Every day. Seriously?

Mom keeps telling me I have to get used to it I can't change the culture, but why can't we? Why can't the culture be changed? Why is the culture so ingrained? Why does it have to be all about food? Why can't we just all come over and enjoy some coffee and some family time with some games or a movie or something? There doesn't have to be food, or at least a huge meal involved at every gathering. Maybe just a few snacks, perhaps. That might make it easier.

It's a lot different than being on a diet. I think a lot of people are treating it like I've changed my diet and it's completely different. When you're on a diet you can choose an alternate option. When you have gastroparesis and have a feeding tube and can't eat, there is no option. You can't eat anything. There is NO option. At least not without fear of pain, nausea, throwing up, constipation, diarrhea, etc. You feel like you have to eat because everyone else is, but you know if you do it's gonna be bad. And you can only eat once per day so you have to be careful which time you choose to do it.

It's especially hard for a foodie like me. I still watch Food Network all the time and have now transitioned from "I wonder if I'll ever be able to make that and wonder what it will taste like." to "I guess I'll never be able to taste that." But I still enjoy watching the TV shows. At least I can still do that without too much emotional pain yet.

I'm lucky that a friend sent me a message about a book that a preacher had written who is on TPN and cannot eat at all, ever, or else he gets extremely sick entitled Taste: My New Life Without Food by Gordon F. Meier. It is written from a Christian perspective and is written on the premise that we should "taste and see that the Lord is good" and that food is only a temporary satisfaction and we do not need food in our lives, just God. It helped me out a lot. And will continue to, I believe. If you want ordering information for the book check out the linked Facebook page above. The book is free, they just ask for a donation to offset printing fees. I highly recommend it.

I'm taking my eating journey one day at a time. It's not easy, it's not perfect. But it is what it is. In the meantime I will leave you with lyrics to an Audrey Assad song that have been helping me through as well. I have a t-shirt that has part of these lyrics on them as well that I wear on the particularly hard days.

"From the love of my own comfort
From the fear of having nothing
From a life of worldly passions
Deliver me O God

From the need to be understood
From the need to be accepted
From the fear of being lonely
Deliver me O God

And I shall not want, I shall not want
When I taste Your goodness I shall not want"

"I Shall Not Want" 

 

 

 

 

Live Like You're Dying, Even If You're Not.

Too many times people, in general, spend so much of their lives wasting time and messing around and working their lives away because they always say there will be time for that. Our society is so bent on we have to work, work, work that there is never any time for fun anywhere in there except on the weekends and so many people spend the weekends sleeping or doing more work from their jobs and still don't have any fun.

What's really sad is that this is starting in childhood now. Kids are coming home with hours of homework in elementary school and being taught that the only thing that matters in life is this stupid end of the year state test. Because of the economy high schooler's are having to get jobs (which they should it teaches good work ethic, but now they have to) at an astronomical rate. Now it seems like our society is one that lives to work instead of works to live. There are several members of my family that have to work on Christmas and I know several others that have to also, granted they are all in service professions, but it is still shocking I know so many people that have to work on Christmas.

Anyway, my point on all this is when are you stopping to smell the roses? When are you stopping to get some ice cream with your kids, stopping to go to the movies, stopping to go on vacation. When's the last time you were like I think I'll skydive or bungee jump? How about something simple like taking a swim? Dancing like no one's watching? Starting a new hobby you've been saying you were going to start for the past 5 years? Traveled the world like you've been promising your spouse?

Because once you can't, you can't. And it's just that simple. You can pretend really hard. You can write blogs about how you are going to become you again, you can make plans, you can dream, you can try really, really, really hard. But once you have lost your ability to live like you're dying, it's gone. So now what? And let me tell you, a lot of people think it's just cancer, it's not. Chronic illness, invisible illness sucks it out of you hard and there is no treatment for chronic illness so you're stuck with it until old age. That really sucks.

And you never know it's coming either. You never expect it. You never know what it's going to take when it comes either. How severe it's going to be. I can prove this too. I remember being a 5th year senior in undergrad taking a class called Adaptive PE which is basically PE for those with special needs. I knew I was having some strange issues starting when I ran, I knew I was starting to feel dizzy all the time. I knew I was starting to have some stomach issues and sometimes there was blood when I went to the bathroom. The doctors kept telling me it was because I was a young female though and I would grow out of it.

I remember sitting in that Adaptive PE class and the teacher teaching me a lesson I would never forget. She taught us the term Temporarily Able Bodied (TAB). She said every person in the world was not a typical person they were a TAB because you never know when that person would become handicapped and disabled. I remember sitting in that class as a straight A student, in 5 clubs, in 2 bands, 1st chair bassoon player, senator on the student government, vice president of the women's society on campus, active member in my church in the community, ready to go back to the camp I worked at every summer for kids with Autism, with 3 jobs currently, ready to graduate in about 5 weeks, running 10 miles a day...saying that will never be me. My life is perfect. How could God make me disabled? I want to work with disabled kids, He needs me healthy, He won't make me disabled.

No lie.

Remember those nagging symptoms I listed above? They got a little worse on the graduation cruise I took to the Bahamas a couple weeks later but I was in the Bahamas so I didn't care. I powered through. That summer at Autism camp was miserable but I made it. September-November were hell and we couldn't figure out what was wrong, but November 13, 2009 I was given my first diagnosis and I almost died my first time. So from April, 2009 (and had everything I wanted up until the day I went into the hospital, honestly) where I was on top of the world and had EVERYTHING I could have ever wanted to November, 2009 I went from the perfect life that I took for granted over and over and over to being chronically ill and no longer to do things anymore. That's 7 months people. That's less time than it takes to have a baby. That's how fast it is people. That's how fast your life can change people. And in some of my friends it's faster.

Even though, I don't have cancer and I'm not dying, I still can't do things most normal people can't. Heck yesterday I couldn't even get out of bed or turn on the lights or any sounds because lights and sounds were way too much. Anything else and there would have been vomiting and nausea and dizziness. But I still try to have good days some days. I still try to talk to friends on Facebook. I try to listen to music when I can have noises, I try to watch some TV I like, read some books, I have learned how to have some fun from bed. But that's about all the fun I can have at this point. And that's really not fun at all, for long periods of time. 

My point is that you need to have a good time while you can. Do some things that you've always wanted to do. Take that trip. Dye your hair purple. Do whatever your heart desires. Because you never know when you will not be able to do things anymore even if you're not dying. You need to pick up a musical instrument, do something crazy, something you've always wondered "can I do that?". Remember we are all just "temporarily able bodied" and when we aren't it comes fast and out of no where and you never know what you're gonna lose and when so do stuff now. Get out there and have some fun! You never know when you won't be able to anymore. 

When Christmas Can't Be Perfect

We all want Christmas to be the perfect Christmas we all dream of...the Christmas we see in the movies.

We want the perfect Christmas tree, the lights, the snow, the family gathered round (and all getting along), the presents that are perfectly picked out and everyone loves them dearly (but didn't break the bank), we want to have the moment where we realize that we really have a wonderful life by the bell ringing on the Christmas tree.

But that doesn't happen does, it. Especially when you're chronically ill. Especially when you try to hard to make it perfect. 

When we try so hard to make everything picture perfect all we really end up doing is disappointing ourselves, really. In the long run. 

Lately, all I've been doing is trying to do everything to make Christmas for my family perfect. And I'm not quite sure why. I think it's because the holidays are stable and they happen every year and they are associated with happiness and normalcy and I've been through so much change this year that I really need something normal and happy and stable, rather, my therapist thinks all this about me and I agree.

But even in this making everything perfect all I've done is make my expectations of the day so much that I can hardly stand it and set myself up for failure to a point where I already know it's going to be a let down. I've also set my body up for failure at a time where I need to be in healing mode more than ever. I have just gone through three of the most traumatic months of my life and now I am taxing it to the limits worrying about stupid stuff like is the table turned exactly 3 and 3/4" this direction and are the lights exactly 8" apart all the way around the tree and is the whole house dusted and is my sisters room perfect and are all the dishes washed and put away and are all the clothes put away and there better not be any dirty laundry on top of the washer either, because who has dirty laundry on top of their washer at the holidays, not us. Not this Christmas. And I am not joking about any of this. I feel bad for my mom, because this is how neurotic I've been, because for some reason I want this Christmas to not only be perfect, but clean, and I mean mega clean! 

I have spent every last cent I have making sure my family and closest friends have the most meaningful gift I could come up with for them. If they asked for a $15 something I made sure they had the $50 version of it. Lucky you if you're in my family. I am also not kidding about this which is sad. Because yes, Christmas is all about the giving. But to what point is it about the giving because you care and to what point is it about the giving from the heart? I mean I really hope they all like their gifts...but I could have probably done just as well, with less money. 

My mom kept telling me to slow down and that I was doing way too much and that I was going to make myself sick and I kept breaking down crying telling her I just wanted to clean and make the house nice for Christmas and for my sister to come home. Then for the past three weeks I've been having severe increased muscle weakness to the point where I thought I was going to have to use my wheelchair again. Well, come to find out today at my physical therapy evaluation that the silly stupid stuff such as vacuuming and standing up to clean could have been causing my muscle weakness and severe pain because my hips and ankles are severely hypermobile and more-so than I was aware of so a lot of things that I am doing on a daily basis...like walking...are actually causing damage to my joints, muscles, and tendons and could end up causing some severe permanent damage if I don't start paying attention and slowing down soon. This could be why I felt so fatigued after doing what I thought were such small things.

I also am having an extremely hard time eating here lately. I'm being told to try to eat, but only very small portions once a day, by very small portions I'm talking 2 or 3 bites and for a foodie that is just not very possible. Then I lost one of (my most powerful nausea medications) to a prior authorization/insurance issue so until that is resolved eating anything really isn't happening at all comfortably or willingly. So going into the holidays where eating is the center and focused on so greatly as part of the thing that is done at every gathering is not very exciting for me. Plus, even with my limitations, going to gatherings where people stuff their faces, that just is not possible for me anymore, so it's just something else to make me feel isolated and left out in the holiday world, which is another reason why I'm trying to make everything else so perfect I think, so there is so much less focus on food. I mean our whole society is focused on food, especially at the holidays, what do you say when you are offered food over and over again and you really want to say that will make me throw up or feel like I want to die but you really have to say no thank you for the 4,000th time because no one understands that no, seriously, you really can't eat. 

Anyway, my big takeaway here is that we need to learn, especially as people with chronic illnesses that there is no such thing as a perfect Christmas. There is no such thing as a perfect Christmas no matter who you are. We need to learn to remember the reason for the season. If you look at the Christmas story from a distance you wouldn't think it was perfect, but you know in the long run it is. So do what you can to make your Christmas work for you. Put up a little teensy Christmas tree, put out a couple decorations, send out some Christmas cards, do something that makes Christmas special for you and go with it. That will be your perfect Christmas. As for me, I've already done myself in for this year. The house is spotless and the money is spent, but I vow to try not to worry about the house as much until Christmas is over, because it will get messy between now and then. I also vow to remember that Christmas brings a little bit of George Bailey out in all of us. And we can try to remember that no matter how slow, or imperfect, or fragmented, or dirty, or what kind of presents we give or get we really do have wonderful lives. 

Becoming Me Again

I've been struggling wrestling a lot lately with the idea of being a "real person" vs. a "sick person."

It seems that our society strives so much to label people and pigeon hole them into types of people and for a long, long, long time I've been labeled a "sick person" and well being labeled a "sick person" is just not fun and sounds kind of depressing quite honestly. Plus, my doctors have been trying to get me to focus on more quality of life so that I'm not always having to focus on my health all the time (which has been a God send, trust me!) So for the past couple of weeks, I've been trying to transform from a "sick person" to a "real person" whatever that is. And let me just tell you..it. is. exhausting. but fun. but exhausting.

I am tired. But having fun. But oh so very tired.

I'm used to the only outings that I have in my day being taking my dog with me to go get some coffee and whatever doctors appointment or therapy I have that day if I have one. Lately I've been trying to add in some shopping, or a movie, or a concert, or going to coffee with friends, etc during the day. Plus, keeping up with the chores of the house too.

By the time I finish one extra thing I'm completely exhausted and my muscles in my legs especially are all shaky, but I keep on pressing on because for some weird reason I want to be a "real person."

But what is being a "real person" all cracked up to be. So far all I have found out is that they run around all the time and never get any time to rest and are always trying to out do each other, yet this is what I'm trying to do over and over. Because I just want to be normal. I just want to go one day without being sick. I just actually want to be Meggers again.

Even when I went to a concert Friday night I had to pack 15 pounds of medical equipment to be able to go successfully and comfortably since it was so far away to feel comfortable being away from home. Then yesterday I had a distant family member add me on Facebook and she was asking me about my illnesses and she goes "So are you always sick?" That kind of caught me off guard because yes I am always sick, but I also always try to live too. Or at least I think I do. I'm trying to do normal things. I'm trying to be as functioning as I can be. I'm trying to be as much of a "real person" as I can be.

I spent a lot of time talking to my counselor about this today because she said that she could tell it was really seeming to bother me. We determined that it's ok for me to be a "real person" but do it like a "sick person" needs to. So instead of doing everything that "real people" do all at once, just do them sparingly and randomly and not with so much gumption. But I have a very hard time pacing so on days where I way over do like Friday and today I have to be prepared for the crash. She said I need to learn to focus on days where I can pace and learn to do normal things at my pace so that I can feel like a "real person" but not harm myself or make myself tired or worn out. This is where I need to focus my energy right now, figuring out how to do that. That will be difficult. She suggested finding one or two friends that I trust a lot so that I can count on them to go out with them so they understand my need for pacing. We both understand my need to feel normal, but we both understand my need to not overdue because it could be detrimental to my health in the long run. I'm still recovering majorly from the concert on Friday.

But for right now I'm just going to continue focusing on me and focusing on what I'm doing to overcome my illness day by day. What I'm doing to overcome my title as "sick person" and what I'm doing to become more labeled as a "real person" whatever that means so that I can start regaining some of my life back, some normalcy back, some routine back. I'm going to stop focusing on my health as much (probably not here though, it still is a health blog) and start focusing more on what I can do and what I am doing in my life and start living this so called life that I have. I'm going to start figuring out what I need to do to be me again, because I really miss me, I used to be such an awesome person. Because like this one great band said "Just a chance that maybe we'll find better days...cause tonight's the night the world begins again."

Dressing Up and Having Fun

Ya know when you're on Facebook and you get those really annoying messages from your "friends" or you're walking down the street and you get that comment from the family member or you overhear that snickering behind your back from the acquaintance? Well, I've been getting a lot of those lately and I just want to clear the air on two particular areas of interest in my life right now: dressing up and having fun. 

Apparently, if I do either of those things, stop the presses, my sickness is gone and over with, done, that's all folks. Apparently, I'm not allowed to maintain the simple pleasures and dignities of being a young adult female without having my chronic illness status questioned. Heck just in between these two sentences I fell asleep accidentally complete with drooling on myself and everything for about 30 minutes, uncontrollably. I'm sick, in fact, very sick today. Fever, aches, sore throat, chills, on and on. Today on top of my chronic illnesses I also have what I call "real people sick" but ya know what I still got told by some visitors to my house that I look good and look better than I have in a long time. Then one quickly corrected herself and said, "I don't know if you actually feel good, but you look like you feel good." 

But let me tell ya why I like to look good even if inside my body is going crazy and feels like I'm dying. Because there is a quote out there that says, "if you look good, you feel good, and if you feel good, you do good things," and I always like to do good things and looking good really does help you feel better if not physically, but at least about yourself. Now I'm not saying I'm dressed to the nine's every day, far from it in fact, but I do enjoy having at least matching sweats on and making sure my hair is brushed and my tubie topper is changed. If I'm doing anything beyond getting coffee with my dog that day, I will do my best to put on nice clothes and do my hair in natural curls and maybe even put on some make up if it's a real special occasion like a mall outing or something like that. I also enjoy having my nails painted random colors all the time to brighten up my day. Honestly putting on some nice clothes every day before I go somewhere, even if it's somewhere small, or just making sure my lounge clothes match is almost like dress up. Like who do I get to be today? Where can I transport myself besides someone who is achey, chilled, tachycardic, blacking out, etc.? I love the thought that people can look at me and not realize, if they don't know me, how sick I actually am, because it's just no fun being the sick girl all the time. Trust me it's not as glamorous as it seems. Sometimes it's just good to put on a front and go with the flow, because man it feels good to be normal.

I've also been getting lots of comments lately about how much stuff I do despite being so sick. Well, first off, I'd just like to say these comments are obviously coming from people who have never met me pre-sick or are making assumptions about what I'm doing, or just have no idea about what someone who is sick is supposed to be doing or not doing. Because compared to 5-10 years ago, heck compared to 3 months ago, I'm doing NOTHING with my life right now I feel like. But I am doing some things. Ya know why? Because just because I have chronic illnesses doesn't mean the house cleans itself, or the dog feeds herself, or my car drives itself to all my appointments and my body spontaneously absorbs all the information without me being there, or that I stop living at the age of 28 and don't get to enjoy anything ever again because some doctors told me I'm kind of sick. So there.

I rarely do much. Honestly. Every morning I drive my dog to a local coffee shop to get coffee, some days that is the only time we get out of the house all day. It's our tradition, our routine, our sanity, and I'm saying our because my poor puppy needs an outlet too. And just sayin' we haven't been to get coffee in 2 days because I've been in bed to sick to go anywhere. So no leaving the house in 2 days. On other days I leave the house to go to doctor's offices and therapies. I have lots of those, so it probably does seem like I *do* a lot...because I'm always driving 2 hours to this doctor or that doctor or 3 hours for this infusion, or 4 hours for that infusion. But I'm not doing anything fun for those outings, and quite frankly they all zap the energy out of me and make me have to take naps as soon as I get home no matter what. I have made 2 good friends in Indy and I do fit in visits with them whenever possible when I have appointments up there so that I don't drive 2 hours each way for a 5 minute doctor's appointment and turn around and come back, but usually we just grab a coffee or go to a house and sit and talk, nothing high stress or energy, and it increases my nap time when I return home. 

I do cook quite a bit, but I do it all sitting down at the kitchen table, I've even thought about starting a second blog called the sitting down chef about how I adapt all my cooking techniques for people who can't stand while cooking since I enjoy cooking so much while "differently abled". I cannot do most chores as they completely put me in bed for both pain and fatigue. I did go to the movies for the first time in a year the other day and saw "Catching Fire", it was awesome and amazing and I had a blast, but I almost ended up in the ER that night from the biggest crash there ever was because it was right after Thanksgiving and then seeing the movie and the two combined led to extreme symptoms. You see I post all the stuff I *do* on Facebook because "friends" get mad that I'm negative and don't do things, but then when I do things they don't see the outcome of me doing them and also send me messages that I'm doing too much. There is no happy medium. There is no magic bullet. But I know that I'm working on balancing good days and bad days in my life and not overdoing and over stressing my body. I know that I'm working on finding out what's good for me. And I know that I'm working on not worrying what other people think about what I'm doing or not doing with my life. 

I'm 28 years old, so I should be out doing a whole heck of a lot more than I am right now, that's for sure. So if I want to go to a concert that's 2 hours away with one of my best friends, then I'm gonna do it. I'm gonna pay for it later, but I'm gonna do it (next Friday, in fact). Because going back to looking good leads to feeling good. I think that doing fun things leads to feeling good too. The best piece of advice I ever got was the day that you don't get out of bed is the day you will never get out of bed again. And I truly believe that. It's so hard to force yourself to get out of bed when you feel this bad, but once you're up and moving around at least it gets your mind off of your illness for a little bit because the worst thing is to be thinking about your chronic illness 24/7. You just gotta remember to try to do one thing every day, even if it's just going to get coffee with your dog, because sometimes you need a little something different in your routine, and you've definitely gotta get outta that bed. 

Playing Catch Up!

I realized in between being in the hospital multiple times the past couple of months and National Health Blog Post Month I haven't actually updated on what has been going on with me health wise in a while and there has been a whole lot going on and just a whole lot in general, so I'm going to do as good of an update as I can without being too horribly long if I can help it. 

MEDICAL UPDATE

*Last I left you on the update forefront I had a bad tube (that had just been put in), a bad GI doc, a lot of symptoms, no real idea of what was going on, and was trying to adapt to life as a tubie. None of this is true anymore, thank God, but it took me a long time and a lot of drama to get to this point! 

*I kept having severe symptoms of not tolerating my formula (only getting about 200 calories a day),  having lots of bile come back through my tube, vomiting, distension, basically lots of nasty symptoms. So I finally got a GI appointment after many, many attempts with a rude nurse telling me it was no big deal and it was expected and to get over it. 

*This GI appointment was the worst appointment I've ever been to in my life, it was demeaning and belittling. Basically every symptom I brought up I was told was impossible. And my mom was with me so the doctor was acting like he didn't believe either one of us. 

*3 days later I was told to go to the ER by the on call GI doctor because my symptoms were very worrisome and my GI was no where to be found (like the other doctors couldn't even find him or his nurses) so I went to my ER in town and they sent me to Indy after a CT scan revealed I had an obstruction and I spent 9 days there. 

*In that 9 days I got my tube replaced to a bigger, better tube. And then it was re-inserted twice when it halfway pushed out and fully replaced again when it completely came out the day I was supposed to be getting discharged. I also got a port so I don't have to worry about getting IV's anymore or labwork because my veins are completely shot. It is also there because my geneticist believes will have to be on TPN or IV nutrition eventually. 

*Have been doing ok with the new tube, no crazy *impossible* symptoms anymore so the surgeries must have fixed those impossibilities right up. 

*I'm still only up to about 800 calories a day by tube and trying to eat orally but that's not going so well.

*I met with my brand, spanking new GI doctor this past Monday and while he basically told me that 'we' will get little to no use out of my stomach it is still good to keep trying. Right now we are having me try taking some anxiety medicine 30 minutes before eating (small bites not full meals) orally (it relaxes your stomach muscles) to see if that helps with the nausea and vomiting. I'm supposed to try that at breakfast for a week, then if that doesn't work dinner for a week, and if that doesn't work a bedtime snack for a week...he said if that doesn't work it's a fail and I will unlikely be unable to eat without vomiting ever again. Good news though I successfully got 2 (FULL MEALS) down this week without vomiting at breakfastish/lunchish time!!! Bad news, I have not had them come out the other way either and I'm currently trying to work on that with miralax and I'm having a lot of pain and distension and cramping. To go along with that he also wants me to get some peppermint oil which he says will help a ton with my abdominal muscle pain from the tube surgery and from the cramping and distension, so I ordered some from Amazon and am waiting on it to get here. He also wants me to try to get my acupuncturist to see me again (she quit seeing me after I got my tube) to see if that will continue to help me with pain management (this will get its own section). He also told me to continue my mito supplements because that will help too. 

*I'm seeing my geneticist at the end of December (30th) to go over all the genetic testing and see where we are, I'm so nervous for, but can't wait for that appointment.

*I'm seeing rheumy next week, also can't wait for that, lots to update him on and lots of new concerns

*I finally saw the neurosurgeon about my thoracic outlet syndrome and he agrees that we are likely looking at surgery in the near future, definitely looking at it in the future, and that will hopefully relieve a lot of my pain and maybe some of my autonomic function symptoms. I'm waiting to hear back about an EMG, X-Ray, and specialized MRI called a neurogram to look at my nerves so we can figure out exactly which ones are causing the issue. 

*I'm continuing with chiropractic weekly, massage whenever I can afford it (usually bi-monthly), and weekly saline infusions to stay in check with my self and maintained. 

BUT IT'S JUST THE POLICY

I don't know if you have noticed or not, but healthcare is going through some changes right now. And quite frankly all it's doing is screwing over the patients, especially the chronically ill ones. 

Two things have come down and directly affected my life, or started too lately and they are really irritating me so I'm going to blog about them because I can and I will still probably get in trouble for it. But I'm going to talk about how the Affordable Care Act and the new drug laws have affected me or are starting too and no one even knows what they're doing. Seriously. 

At my last hospital visit, I just so happened to be admitted at the same time as one of my good friends with all the same conditions as me, most of the same doctors as me, on the same floor as me. It was insane the things that I was told it had to be this way per policy and she was told the complete opposite. Or we were both told complete opposite things on different days by different people, or even worse, the same person. But I'm leaving her off of my blog and I've got an even more ridiculous story that is so stupid it is hilarious. So here goes. 

Pain Medication:

*When I ran out of pain meds from the hospital I asked my rheumy (who's been filling my pain meds for 2 years) if he could switch my pain meds to liquid since I have a tube now. His nurse informs me that since I haven't asked for pain meds since June (31st) he could not refill them and that he can't refill them anymore anyway because as of Nov. 1st only a PCP can refill pain meds or a pain specialist. Now mind you, my pain meds he filled at the end of June should have lasted me until September at the rate of 1 a day (which is what I take) since there were 120 in there and once September rolled around I was being provided pain meds by the hospital until I asked for the refill. But I had even quit taking them because of the dietetics program so I still have almost the whole bottle, I just wanted them switched to liquid. 

*I called the PCP he wouldn't refill them without the info from the Indianapolis doctors even though I have a doctor in town willing to vouch that I benefit from them but because of the new law he can't fill them. 

*My geneticist calls him and tells him to refill it but only if I agree to go to pain management because it's policy, I agree, I then have to go in and fill out all kind of paperwork before I can get my refill. It still takes 3 days to get my refill even though I show up to fill out my paperwork within 30 minutes. 

*When the prescription is finally called in it's tablets (60) and I call back and say this won't do, the whole point was to get liquids I have tablets at home! 

*The liquid is called in and it's only 12 doses compared to 60. I call back and ask why and they say that's the most the law will allow to be written for. I say but I got 60 pills yesterday but only 12 doses of liquid meds and get rude answers and get told that it will be refilled until I get into pain management don't worry about it. 

*4 days later when I find out I will be calling every 4 days, waiting 3 days for a refill, after calling 3-5 times and begging for a refill and to speak to someone and finally getting the refill but never getting an explanation of the policy of the 12 refill rule I realize it's going to be a long couple of months. I ask to speak to an office manager. I still only get 12 doses on my next refill. 

*I call back and explain that this is a waste of resources for their entire office (the receptionist, the nurse, the doctor), the pharmacist, and I simply can't afford it or use all my spoons (energy) to continue to do this. I am promised a phone call back within 30 minutes, instead I get a call from the pharmacy that my 12 doses are ready. 

*So yesterday, I call and simply say "This is Meggers can I get my pain meds refilled please, thank you." and hang up. So when I check my pharmacy account to see how much it's going to be this time, imagine my surprise when I notice it says not only that I have 125 doses but also a refill on the prescription???? **P.S. Still no referral to a pain clinic I'm asking rheumy about that Wednesday. Ugh. 

*Well, that policy certainly got shot to hell in a hurry...if it was a policy at all...or if someone just didn't know what the heck they were doing I don't know, but the picture explains it all. On the left is the *1* small bottle that I had been getting previously for the 12 doses, on the right are the *5* larger bottles I picked up yesterday containing all pain medication. What the heck?! I just don't understand. 

I also don't understand how the "policy" that is supposed to protect patients and put order in the hospitals and doctor's offices is very likely what almost killed me this past hospital visit. Every doctor was so worried about what the "handbook" said that no one was worried about what I was telling them and what I was telling them is that I was dying. 

Like when I had to relive the emotional trauma of having a critically low potassium level and almost dying from that because when I kept telling the doctors I couldn't be NPO 2, 3, 4, 5 days in a row, I really couldn't be because I would die. (Go back to the blog's beginning if you want to re-live my first time almost dying from my potassium being too low, this is a real fear of mine, not just unfounded). But no instead they just called in a psychologist because I had extreme anxiety and didn't want to be there when I was telling them over and over again that I needed fluids with electrolytes and my formula to be run. They acted like I didn't know what I was talking about. They also told me that there was nothing wrong with my second tube and it was too costly to do anything about it, until it came completely out the next day. The doctors had no idea what they were doing with my conditions but they were allowed to care for me and tell me that I didn't know what I was talking about, even though I've been living with this for the past couple of years. I was told it was their policy so many times that I'm sure that is their answer for everything. I'm glad that they finally started listening, I wasn't sure I was going to make it out of there a couple of times. And I'm not being dramatic either, it was a really scary 9 days. If you are a close friend you remember and I thank you for being there for me. 

GENERAL UPDATE

Like I said, the problem with all these new laws and rules and policies is simply that the patient is left out of the equation and I'm still recovering from that. I'm still learning to trust again. I'm still literally recovering because you can't just almost die and get up and go again. I'm going into the holidays grateful to be alive and giving like crazy! I am, however, still horribly weak and sick. I am trying to enjoy what I can, when I can, and remember the reason for the season. I'm spending a lot of time in bed and a lot of time with my dog. I'm still cooking as much, if not more, than I was and trying to learn not to eat the food. I'm trying to get my thesis off the ground and gear up for 2 classes in January (still online, thank goodness!) I cannot wait to get back to my old self and cannot wait for August so I can get back into program mode and finish my dietetics degree up and do my internship and graduate! I'm so excited about so many things. I'm doing everything one day at a time with God's help because even if I'm not going to be healed here on earth, I am healin' hopefully. 

I'm going into this Christmas season repeating the following verses because I need to cling onto them so much right now:

"Do you not know? Have you not heard? The Lord is the Everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40: 28-31

And I Will Give You Rest...

Surprise! It's the holidays! Specifically Christmas up in this household, and with holidays comes a major spoon shortage. And not just once, over and over and over again. And with major spoon shortages come major symptoms and not so fun days, and nights.

I have been having major problems with insomnia lately. I will fall asleep without trying around 10 pm which is aggravating because I'm usually in the middle of a TV show, but then when I wake up (or mom wakes me up) to take my medicine around 11 or 11:30 (or 1 or 2 am) I am up until 4 am without fail. And it's just not fair because I am so exhausted, but just can't sleep. No matter what I do. I know all the "sleep hygiene" rules and do my best to follow them. But when I can't sleep at 2 or 3 in the morning I end up turning the TV back on because I'm bored, so I guess all the rules but that one.

Anyway. So I'm not sleeping at night very much then still doing my regular stuff, plus a little bit more because of the holidays during the day and getting even more tired. I used to take naps every day...but now because I'm not sleeping well I'm trying not to take naps so that I can try to sleep that night, but then I don't, and on and on. It's a vicious cycle. Then I get one or two more things added to my schedule then the more physical symptoms start. Like the pain, and the muscle cramps, and the pain, and the blood pooling, and the pain. Pain from being tired is unreal. It shoots right through you and raises your blood pressure. And you think that you could sleep for days and days, and then you finally fall asleep, and wake up again, only 5 hours later. So frustrating.

And I'm not talking that I'm consistently tired--a feeling or need to rest or sleep--anymore, oh no. I'm feeling consistently weary--lacking strength, energy, or freshness because of the need for rest or sleep--all the time. I'm feeling consistently worn--showing the wearing effects of overwork, care, worry, or suffering.

Luckily though, I'm a believer and I know that He gives me rest. I know that He tells me in the Bible to "come to me all who are weary and burdened and I will give you rest." (Matthew 11:28) I know that He reminds me of this daily. I know that in the times when I'm up in the middle of the night or day He is using that time to talk to me and to reassure me. I also know that He is taking care of me because I'm recovering in rest times that are so small that they are small rest times for typical people, not even for chronically ill people, and that in and of itself is a miracle. I may have to rest more frequently, but at least He's allowing me to rest for a short amount of time so I can get back to all the fun things I want to do for the holiday season.

There is a song out right now by Tenth Avenue North called "Worn" and it reminds me so much of where I am right now in my life. The song is from the perspective of somebody that is so worn that they just do not understand how life can go on and they are reaching out to God to find out if He wins and this is so where I am a lot of the time. Like where are the good times? Where does the positive energy balance come in? Where is the purpose? Where is the plan? Where are the spoons? When do we find out what the weariness is for? Will their be redemption? When does life let up? When does the struggle end? Sometimes we don't get the answers. But sometimes that's the point. Sometimes we just have to wait and stay up in the middle of the night and wait for Him to give us rest in whatever form or fashion that may be and accept it, even if it means skipping out of some of the holiday hustle and bustle.

 I will leave you with two pictures of lyrics from the song I find comfort in from the song "Worn."