On The Lupie Side Of The Street

I don't typically talk politics, not on this blog and not in day to day conversation. It's something I don't like talking about, not that it doesn't interest me, but I don't like expressing my political opinion. But there is something I need to get out, it eats away at me every time I read the headlines. A government run health care system.

Yes, in theory, it sounds marvelous! Health care for everyone? Really? Oh it's just amazing! But seriously people, this can't work. First of all, it's not like this health care plan is going to kick in for a while, 2013 at the absolute earliest. Guess what though, we get to pay taxes on this future health care plan, possibly starting in 2010. So for three years we get to pay taxes on something that isn't actually helping us at the present time. In this grand recession where people are losing jobs left and right, when everyone seems to know someone who is unemployed, our taxes are going to be raised. Those of us who are fortunate enough to have health insurance will not only be paying for their current policy, but for an additional one through taxes. Here's another surprise, there is no guarantee a government run health care system will actually happen. It doesn't matter if you pay the taxes, there is still a chance it won't work out. All of that tax money will be gone, never to be seen again.

But let's believe for a moment that we willingly pay the taxes and the bill passes and takes effect. It doesn't matter if every person is taxed to the max, there simply isn't enough money for everyone to have health care. It's sad but it is also true. We are a nation who is debt because of frivolous spending and no one wants to take responsibility. How are we supposed to afford health care for all? It isn't possible so that is why there will be short cuts. You think it takes long enough now to see a specialist? Sometimes it takes up to six months to get in with a practice. Imagine how long it will take if the government runs our health care system? Furthermore, the government will decide if you even get to see a specialist.

Oh your heart is feeling a little off kilter? No you don't need a cardiologist and an EKG, you need your happy ER doctor to tell you that you just need to change your lifestyle. Never mind your heart is skipping beats, beating out of your chest, leaving you breathless, and causing you excruciating pain. You don't need to go to three cardiologists and have them all scratch their heads because they don't know what's wrong. You don't need an appointment with a cardiac electrophysiologist to figure out you have an extremely rare, dangerous in certain situations, and possibly fatal heart condition. You don't need any of that, what you need is to change your life style. That's exactly what is going to happen with government run health care. You won't get to see a specialist when you need to, you won't get the proper tests run, you're only going to get a half way excuse about why you feel the way you do.

Now this goes out especially to all of my chronically ill readers. Have you ever heard of end of life counseling? In this health care bill, it primarily applies to senior citizens whose health is declining. Every five years you will be counseled on how to live, or not live, the remaining time of your life. The focus isn't on getting you better, making you healthier so you can have a few more good years. It's about pain management and possibly teaching you the options on how to end your life sooner.

Cruel isn't it? But everyone wants free health care, right? That is part of how this program works, you get free health care while you are healthy. You're allowed the occasional case of the sniffles, a flu every now and again. God forbid you are diagnosed with a debilitating chronic illness, or an illness that is potentially deadly without proper treatment. I feel the end of life counseling will also extend to the chronically ill. The government is essentially saying "You're not as healthy as the rest of the general population, therefore you are disposable, good bye." That is how they will save money so they can attempt to provide some sort of health care to everyone else. The weak die off and the strong survive.

I admit, I voted for President Obama. I wasn't one of the "Yes, we can!" people. I was on the fence about who to vote for until I went to the polls. And now every single day I regret ever voting for him. It's because my life hangs on by a thread if this health care bill he proposed passes. I understand that lots of people don't have insurance, I might end up being one of them. But this government run health care system is not the way to go. Heck, let the people who have insurance keep their insurance. Let the government give out vouchers, create a tiered insurance policy that anyone can purchase. But don't fall for this health care plan that the government is proposing. It seems fine and dandy to those who are healthy. For someone like me though, I might as well dig my grave and hop in because I will not survive under this new plan.

I urge you to write to your representative, tell them that you are a voter, and explain your concerns. If change is what our nation needs, let it be the right type. Let it be the type that won't leave people like me out in the cold. Let it be the type that won't encourage your grandparents to give up their life. Let the change be something that allows us to live and say that we are not disposable, we are individuals, and we deserve more than this!

Here you can look up your representative using your state and zip code.

No, I have not been around coughing Mexican pigs. But that's the question that my rheumatologist asked me upon finding out that I have had a fever and sore throat as of lately. I suppose it would have been more professional if he asked "Have you been around persons who have been diagnosed with the H1N1 virus?" My doctor has the oddest ways of phrasing questions and I can't help but to find them hilarious. A few months back I was having all sorts of heart problems. When we couldn't figure out why he asked me the following: "Have you been snorting copious amounts of cocaine and drinking a venti latte all while running a marathon?" Of course my answer was no. I love the word copious in that question, it made the sentence that much better.

So right now I am in the process of trying to figure out how I am going to keep my current insurance after I'm 25. Now I'm not positive but my Mom thinks all they might need is for my doctors to fax the company my records. For a while there, we thought I was going to have to go on disability and go through that hassle. I'm against disability for myself, let me tell you why. I may be dead dog tired most days, but I don't see myself as disabled. I may hurt so much that I can't get out of bed, but I don't see myself as disabled. I may have fevers that try and take me out for the count, but I don't see myself as disabled. I feel I would be abusing the system by going on disability. I don't deserve disability anymore than someone who has a paper cut.

I want to work, I want to be self sufficient, I want to be a decent, productive human being. But if attempting to get on disability is the only way I can stay on my Mom's insurance, I don't have a choice. I cannot afford my own insurance plan and there is no way my Mom could help with the financial side of it. Having my own plan also may cause me to switch doctors, which I don't want to do. I love my doctors and nurses. They have all been fabulous to me and done nothing but help me to feel better! So I need y'all to hope, pray, jump backwards, do what you got to do to make it work that I am able to stay on my Mom's plan without going on disability.

In other news, I'm absolutely enthralled that so many people are reading my blog. It makes me feel like I have a voice and that maybe my blog is helping someone? Or at least it gives those around me a glimpse into my life. I'm just thrilled to have an audience. Oh, and I've definitely gained weight, I'm up to 101 according to the lovely scale at the doctor's office. I know it's a good thing for me to weigh this much, but I feel fat. I feel really fat and dumpy. I think I need to upgrade my lazy walking to speed walking. I would love to take up yoga but I have no where to start. One of these days I'm going to get a Wii and a Wii Fit so I can have fun exercise time! But that's going to be a year or more from now, I have a lot of expenses I need to focus on for now.

I'm probably going to go job hunting again tomorrow, at least online. I am currently in the process of turning my sister's room into a craft room. It's taking some time and a lot of cleaning supplies. My sister's room hasn't exactly been known for it's cleanliness. No offense sissy, and you also have about 2 bags of stuff you need to pick up. Old computer stuff, APO junk, other randomness that you can stuff your apartment with. I would love to eventually paint Lindsay's room a darker color, just like my room. Of course that is up to my Mom but my sister's room needs it just like my room needed it.

Well, I just finished a lovely lunch of baked salmon, brown rice, and edamame. I need to brush my teeth and then continue with the cleaning festivities. And Gmail is acting screwy with me again!

Well I didn't get the job I applied for last week. It seems as if they were only hiring for temporary employment and I supposed I didn't fill those qualifications. I would have been thrilled to do a bit of temp work, something for some back up cash to hold me over. Apparently if someone on their permanent staff quits, I'm next up to be called in. I hope that's the truth and not a lie said to make me feel better. I've also applied for jobs with some banks in my area and some legitimate listings on Craiglist. I keep thinking that something, somewhere has to give. But of course there are thousands and thousands of people who are unemployed and thinking the same thing. I wish I could find a legitimate work from home business, but everything turns out to be a scam. Grr, frustrating.

Tomorrow I have an appointment with my rheumatologist. As pathetic as this sounds, I'm hoping if something has to go wrong, it goes wrong now, before I'm employed. I kind of want the bad stuff to go ahead and get out of the way before I move onto a better part of my life. Of course I know that life doesn't work like that, but wouldn't it be great if it did? Wouldn't it be lovely if people with chronic illnesses could just get the icky nasty stuff out of the way and then go on with life? It would be like cheating the system but wouldn't life be just a smidge better? We wouldn't have the thoughts hovering over us such as "Are my kidneys going to go kursplatt any time soon?" Well all of this is just a bunch of silly wishing. I'm of course hoping that all is well tomorrow and it continues to stay well. Hopefully y'all understand by now is that it never really is well, it's just as good as can be expected.

Today was the first day in a few days where I actually felt coherent enough to do something. I went out with my sister Lindsay and her friend Margot. We went to Target, Sally Beauty Supply, and The Olive Garden for lunch. My sister and I split the chicken alfredo pizza and Margot had the pasta pomadore. Afterwards we went to my sister's apartment where I went into hair stylist mode and did Margot and Lindsay's hair. I have fun playing around with people's hair but I could never be a stylist. I trust myself with scissors when it comes to paper, but with people's hair, I don't think so! I also managed to take a long walk today because I wasn't able to yesterday.

That's all I have to update for now. Oh, I forgot, my Dad started to chew me out today. But I nipped it in the bud. Way to go for me being assertive and not putting up with his bull hockey! I think I showed him that I'm not going to take it and if he wants to get rude, he can get rude with someone else.

I'm at a loss on what to blog about! For once, I don't have something to say. Job hunting is still going slow with not many leads. Tomorrow I am going to pursue some leads and forge the trails on my own. That is of course after I go to the dentist for a lovely cleaning. I'm lucky I get my teeth cleaned every three months. Yes, it's more expensive but because I have lupus I don't have a choice. It's just one of those things for me. Also tomorrow the conversation of crowns will be brought up and for now I can afford one crown on a payment plan. I have a horrible mouth, half is genetics and half is lupus. I'm just going to do everything I can to prevent it from getting worse. I think my dentist should start doing a "Buy one get one free" deal with me. I should at least have a frequent flyer card!

My sister just called the house, she always calls when I am in the middle of doing something. We actually had a productive conversation about job hunting. She is going to stay on the lookout for me. I told her my criteria because I am just getting back in the work world and I don't want to push my limitations.

• I'm looking to work about four days a week.
• Each day I want to work between four to five hours.
• I would prefer to work in the mornings because as the afternoon progresses into evening, my lupus loves to misbehave.
  
• I need to have a job where I can be sitting most of the time. Silly auto-immune disorder.
• I would like to work for a smaller company because then I will become indispensable (hopefully) due to my cheery and optimistic disposition.
• I need my employer to be OK with me having lupus, to understand that I may have to take a sick day every now and again. Believe me, I won't take a sick day unless I feeling like death on a stick.

If it turns out once I start working that I feel I can do more, than I will. But my rheumatologist has stressed, stressed, and stressed some more to be aware of my limitations. Sometimes I think he is more concerned about my conditions than I am. Does he know something I don't? Probably, but he's a pretty good doctor so I trust his judgment.

I went to church this morning. I love how everyone will talk to me for about five seconds and then go talk to my parents about me. Erm, hello! I'm 23 years old and I can talk for myself, I'm sorry if I don't divulge too many details. But that doesn't give you permission to go get it from my parents either. It especially bothers me when my Dad so freely gives out details about me to others and yet he barely says a word to me. He calls me the ghost, such as when he hears a rumbling in the kitchen "Is the ghost in the kitchen?" It's partially because I am so quiet and light on my feet that you can hardly hear me coming.

So wish me luck tomorrow. I'll be out begging for a job like every other person out there! What's even better is that is is going to be raining. Fabulous! Thank goodness for a raincoat.

Choices, choices. Which would you rather have, appendicitis or kidney issues? I'd rather have appendicitis. I have a 3:45 PM appointment with my internist to figure out what is going on. The pain started yesterday as a pain in the middle of my back and it went through to the middle of my abdomen. I woke up this morning with a horrendous pain in the right lower side of my back that again went through to my abdomen. I tried to sip some tea to see if that would help but it just made me nauseated. The common sense person would say "You have a stomach virus." I know what a stomach virus feels like and this is not it. I also know it's spring time, the last of the winter bugs are trying to make their appearance. But just to be on the safe side, I'm going to the doctor.

I can't eat or drink anything for now. I would kill for a promethazine but that requires me swallowing liquids. I've got a drugstore in my room but yet nothing is of use to me. I'm hanging out in the bathroom with my laptop. I've got my TV turned up loud. Regis and Kelly are talking about cars, I think there is some big auto show in New York this week? It's so funny how when you mention your kidneys might be having issues, everybody jumps in to hand over theirs. I don't think they realize the seriousness of it. If they do, they are truly awesome friends. The donor surgery and recovery time always seems to be longer than the time it takes for the person getting it. It's painful and it's a kidney. You have to think about the "What ifs?" What if your kidney goes kursplat in the future? What if you get injured and have damage to your only kidney? What happens if a certain medication chews your kidney up? What if you end up with some horrific disease that decides to chew up your kidney? You would definitely have to go on dialysis and you might even die if your renal failure is bad enough.

So yes, before you go throwing a kidney in my direction, let's rule out some stuff. First, we have to figure out if it could be a stomach virus, appendicitis, or kidney issues. Second of all, if it's a stomach virus, I just have to wait it out. If it's appendicitis it's a little slit, snip, yank, and sew and I'll be as good as new. If it's kidney related, whatever it is has to get diagnosed, then they determine if it can be treated with steroids, pain killers, immuno-suppressants, dialysis, and/or a transplant. If it's a transplant I get placed on the wonderfully long list, probably at the bottom. That's where the family/friend kidney comes into play. Plus you have to be a match, the better the match, the better of a chance it will work.

Of course I could just be crazy? But I don't go to the doctor unless I absolutely have to. I don't enjoy going and plus I don't want to drive the cost of health care up. Plus I'm feeling pain, I have a high tolerance for pain so if I'm feeling pain in the first place, it's a big deal! I stink at the pain scale thing because I never know what my pain is supposed to be. All I know is that I'm feeling it, it hurts, and pain medication ain't cutting it. I'll let y'all know how this afternoon goes! If all else fails, I'll have my sister get on and post a blog. Dangerous, very dangerous. Believe me, you'll know if it's her! She'll be talking about shoes and lip gloss.

This afternoon I had an appointment for a consult for my mouth. I was on pins and needles, here's why. This saga has been going on since November, that's right, November! Insurance wouldn't cover me to see a specialist, so I had to go down to the dental clinic at MCV. Gah, what a scary experience! If I absolutely could not afford dental work, I would go there. But would I want to get parts of my mouth grafted? Probably not. Was I about to? Yes. Anyway, my dentist finally decided to file a claim with my insurance saying I would benefit from seeing a specialist. Insurance approved the visit, I got an appointment, and here's how it went.

For the past few months, people have been telling me how horrible my mouth is. Yeah, thanks, I really needed to feel more self conscious about it. I have impeccable dental care and I feel as if part of this is my fault even though it's not. Part of it is the Lupus, part of it is genetics, and part of happened because of everything my mouth endured with orthodontics. Oh and for those of you who are saying Lupus is genetic, technically it can be but mine was more than likely caused by the Epstein Barr virus. Anyway, the specialist said my mouth was not as bad as I thought it was, that technically I could benefit from one graft, but my case isn't severe enough for insurance to cover it. As long as I keep up with my impeccable dental care, I will probably be OK for another few years, possibly the rest of my life. But, I still need crowns and sealants and some old dental work to be touched up.

Technically it's good that I don't "need" grafts. The doctor said I could certainly benefit from one because of my thinning tissue. But it's not enough for insurance to want to cover it, they would deny my request in a heart beat. It's a bad thing that I could benefit having my mouth grafted but it's not quite bad enough. It's a sort of damned if I do, damned if I don't situation. But at least I got another opinion, at least he was up front and honest with me, and at least if things get worse, I can get a graft done.

Here's what kind of bothers me about this doctor. He was asking me if I got the typical subcutaneous lesions, I get them on the inside of my mouth and nose. He asked me if I got them anywhere else, which for now, I don't. He then went on saying that if you have them in your mouth then you should be having them elsewhere. He also said that I don't have the typical lupus rash and I explained to him that I am photosensitive and the rash will only happen during a flare or if I am exposed to UV rays unprotected. He said that could be sunburn, I said most people don't get sunburned in under three minutes. I think I will have this problem my whole life, people think that if you have Lupus, you have the rash. Not everyone gets the rash though, you can have Lupus without the rashes. It's a very individualized disease and my case of Lupus is not the same as another person's case.

Oh and the next time I get the lesions on the inside of my mouth, he wants me to come in so he can take pictures. Yes, because I want to go across the rivah so I can get pictures taken of the inside of my mouth. Is it for my chart? Probably not. Will he try to submit the photos to a medical magazine with an article, I have a feeling he will. Seriously, if you want to see pictures of lesions and ulcers inside a person's mouth when they have Lupus, Google it already. I know I sound really mean but I could be doing better things with my time than having pictures taken of my mouth. I just get so frustrated when a doctor, or person in general, thinks they know any and everything about Lupus when they don't. For now, the only two people who should be focused on my Lupus care are my rheumatologist and my internist. Unless you are one of those two people, your opinion about "What you've heard about Lupus" probably isn't good enough.

I went walking this morning and I was just able to track my distance, I walked 1.872 miles today, not quite 2 miles. Tomorrow I'm definitely adding some length to my route to make sure I hit the two mile mark! Plus it shouldn't be as cold tomorrow as it was today. I walked, got my mouth investigated, no brand new Kia needed, probably only a used Kia, got an unnecessary schpeel about Lupus, and now I'm exhausted. Is it bedtime yet?

Sorry I haven't updated for the past few days. Life has been incredibly busy for me. Let me give you a bit of a recap. I cooked all day long on Friday! For those of you who don't know, I have a special diet that I keep up with. I don't eat processed foods, sugar, dairy, anything acidic, I also try to stay away from red meat. I cook all my meals for the week ahead of time and I portion them into plastic containers. I freeze them so even on days when I don't feel so well, I can still have meal that is safe for my dietary restrictions. I got some lab work back on Friday which has raised some concerns for me and I am hoping to get more details within the coming week.

On Saturday I went to Shockoe Cemetery with the ladies of the UDC chapter I belong to. It was supposed to be a walking tour with historical information about different people who were buried there. Well, one of the ladies from the chapter brought her three children along. The two older children were wired but extremely well behaved. There was also a baby but I steer clear of babies. I kind of went into babysitter mode and hung out with the kids. I thought the mom could use a bit of a break in the first place. The two munchkins kept asking me about the "dead people" and if they could come out of the ground. By the end of the morning the little boy had a huge crush on me, according to the older sister. I got more flowers from that little boy than I think I have gotten in my whole life. Of course they were dandelions, buttercups, and weeds, but it's the thought that counts.

Afterwards my Mom and I met up with some of the ladies for lunch at Capital Ale House. I hadn't been there in a few years. They didn't have any tables that weren't booths in the front of the restaurant, so they let us have the back room to ourselves. I think it was a good thing, our conversations were interesting to say the least! The food was also really good, considering I'm not a fan of red meat, they had other items on the menu that weren't red meat. I just wanted to see if I could digest it with my new medication. I could and it was a bit on the awesome side. Will I now start eating red meat every day? No. But once every couple of years I might divulge. I'm a take it or leave it type of gal and I can definitely go without the red meat.

Today I woke up early and went to church, 3rd Sunday in a row. It was crowded because it was Palm Sunday. I know this coming Sunday will be crowded because it will be Easter. I like Palm Sunday because I make tons of palm crosses and then I hand them out to people. I was making crosses the whole entire service, I know it's not very mature of me. Oh well, old habits die hard. Everyone at church was thrilled to see me, again. I think everyone is going to be thrilled to see me for another couple of months. Eventually the newness of me will wear off.

I also cooked more food and stored it in the freezer today. I found a really awesome sugar free whole wheat pasta that has omega 3 fatty acids in it! I cooked boneless, skinless chicken breasts on my Lean, Mean, Fat Burning machine! I also lightly steamed green beans to go along with my chicken and pasta. After I cooked 6 meals, I ate my lunch and decided I wanted to go for a walk. I'm not supposed to exercise without supervision so I asked my Mom to come with me. We walked all around my neighborhood and then walked up to the drugstore to get some items that were on sale. We walked a total of 2.648 miles! I know that doesn't seem like a lot, but it is for me. I only burned 194.312 calories but of course I wasn't really doing strenuous activity. For me it's not about weight loss, it's about improving my body's well being.

Now I'm at home with a Monk marathon. I am taking time to rehydrate myself but not too quickly. I don't want my kidneys to get unhappy with me! So far I've had 16 ounces of water and I have another 16 ounces to go for now. I am going to hopefully finish a painting this afternoon. I talked to my Mom this afternoon about the whole car thing, since I don't currently have one. I know my Dad will be furious at the thought of having to help me, but he's just going to have to get over it. I don't think he realizes that with a car comes a job, with a job comes money, with money comes me moving out. When I move out, he won't ever have to see me ever again if he doesn't want to. I'm sure that will make him very happy. I still need a job so if anyone needs someone to answer a phone and do secretarial work, I'm your gal!

On Tuesday I have an appointment with the periodontist my insurance is covering me to see. I hope he will be able to do something for my mouth considering I don't have much to work with. I'm feeling a bit nervous that he will say "Sorry, the Lupus has torn up your mouth, there's no point in fixing it because it will get torn up again." So y'all start hoping and praying he can fix my mouth, that insurance will cover it, that it won't take forever, and then I can start getting my life together without many more hassles. I know I'm asking for a lot and I'm really sorry. I just wish that it could be simpler, like I go to a hospital to get the surgery done, they fix my whole entire mouth in an OR, they stick a feeding tube down my nose and into my stomach, I recoup in the hospital for a few days, and then I go home. But of course there is no guarantee the grafts will take, so that's why they probably don't do them all at once!

I hope everyone is having a fabulous weekend! I just can't believe I walked as far as I did. I missed having my i-pod streaming music into my ears. I'm sure I'll be paying for today tomorrow but hopefully it will be worth it. I'm excited about getting back to the Erika I used to be!

This morning I received a phone call from the practice that I saw a few weeks back. Remember, the place that wanted me to switch my diet around and take 10,000 supplements? Yeah, that place. It was the doctor who I was supposed to see a few weeks back but she wasn't available that day so I saw her colleague. Anyway, she saw that I had canceled my appointment for today and that my new doctor sent over a request for my records. I explained to her the experience that I had during my first trip. How their practice seemed to shove "their" supplements onto me. I told her that I'm a firm believer in the FDA and I do believe in some supplements, like a multi-vitamin, calcium, and vitamin D (especially for me because I never get unfiltered sunlight). I also said that because supplements weren't covered by insurance, it was a little bit too expensive. I need the medications I take to be partially covered by insurance and unfortunately supplements are not included.

I also told her that last week, I called the practice to see if my lab work ever came back. Instead of giving me the results over the phone, the receptionist told me that they had more recommendations for supplements. I was informed that a pharmacologist looked over my lab work and records and put notes on my labs. When I told the doctor that this morning, she was shocked and she explained that something like that should never happen. It should have been her who made the decisions about my health care, not a receptionist or pharmacologist. She didn't even review or approve the notes made about my condition. She agreed that the receptionist and the other doctor should not have shoved the supplements on me. I should have been allowed to go home and do my research on the brands they were trying to push on me. She wanted me to come back to the practice but I explained to her that the experience did not leave me with good thoughts about the practice. At least she is going to mail me a copy of my lab work!

In other news, I've created a wish list for myself. None of it is medical procedures or stuff in me that needs to get fixed. It's purely material and selfish. I think everyone has a wish list but I don't know of many people who share it. Here's mine!

EDIT: My Mom and I are going to get the sneakers this afternoon. They don't have them in a 4.5 but they have them in a 4. So I'm hoping they fit and by this afternoon my feet will be swollen so it will be a true fit. We figured $30 was a good price for nice trainers and they probably wouldn't get any more affordable than this. Besides, I haven't had to buy new sneakers in about 1.5 years.
Adidas Kanadia Trail K gray/pink sneakers size 4.5 If I am going to get back on my exercise routine, I need a pair of supportive, comfortable sneakers. I've always had luck with Adidas, no matter what they always fit me and they usually last a year for me. Even when I was back in high school and worked out all the time, they still lasted a year. I usually wear a size 4 but because of my arthritis and Raynaud's, my feet swell. Icky huh?!

iPod Classic 120 GB in Black. I used to have a mini, but mini died after being alive for over four years. I like the nano but it's so skinny and frail looking that I'm afraid that with one wrong move, I would break it. Plus this one has plenty of storage for my music collection that grows occasionally. I also believe it is the best value for the money. The iPod touch is around this price, but there is less space and I'm afraid of the touch screen wearing out.

Reebok Strapless Pink Heart Rate Monitor. Because of my Lupus and IST I have to be really careful when I work out. Between being conscious of my heart rate, constantly keeping hydrated, and being aware of pushing myself too hard for too long, I've got my work cut out for me. I don't feel like having my heart stop and being followed around with the crash cart. I would prefer a crash tractor (only House fans will understand). I like this monitor because it is strapless, meaning I don't have to wear a strap across my chest to get a reading. It is also consistently accurate. Some people don't like the fact that you have to stop and get a reading. I'm not one of those cardio people who need to reach a target heart rate. I need to stay below the target heart rate. For me it's not about calories burned, it's about improving my strength and mobility in a safe, healthy way.

Yup, that's my wish list and I'm not expecting to get any of it! I've got medical bills that need to get paid off and I'll have more bills fairly soon! Gah...

For those of you who don't understand Dutch, the title is "It has gone kaputt!" Kaput basically means death, but not like human. For example, this evening I was making a gigantic pot of tea so I could make my herbal ice tea. I noticed the kettle was leaking from underneath the handle. This troubled my Mother so, she has never had to buy a tea kettle before. The one we have was a hand me down, my Granny received it as a gift long ago, then she gave it to my Mother. It's Corningwear and she loves it because of the German print on the sides. When I saw the "I'm going to fix it" wheels turning in her head, I told her it couldn't be fixed with gorilla glue or duct tape. Mother looked awfully crest fallen.

Yesterday I was thinking to myself that things were going fairly good for me medically. Silly me spoke too soon! I met with my new Primary Care Physician this morning and it feels like a good fit. She wanted me to get one of my prescriptions switched over to another doctor. I just called CVS and they got the request and filled my script! I was so worried that the other doctor wouldn't fill it for some odd reason. But based on my medical history, it's a vital pill, it allows me to eat, it calms me down, and it can help me to sleep. It's a miracle pill for me. But I have a lot of miracle pills in my stash.

Anyways, once I got home from my appointment, I started to feel a tad bit cruddy. My bp was 90/50 at the doctor's office. When I got home situated, it had dropped to 90/40. I was freezing cold, my temperature was going between 96 and 96.5 degrees Fahrenheit. My normal temperature is around 99 degrees Fahrenheit so this was a bit on the low side for me. My resting pulse would jump from 80 bpm to 140 bpm which is a common occurrence for someone with inappropriate sinus tachycardia. Needless to say, I was feeling quiet pathetic and my body was having a bit of a hissy fit. It had to prove how dissatisfied it was with me by making me pass out twice. Luckily it happened in my room, when I stood up, so there wasn't much for me to hit my head on and I landed on carpet. I can't tell if I passed out because of the low blood pressure or from the tachycardia. IST can cause syncope but so can blood pressure problems. Another mystery of my life!

I'm feeling better but still feel a little on the wonky side. I've got more color in my face, I was looking a bit jaundiced earlier. Again, it could be a side effect from the diltiazem or it might mean lupus starting to wreck havoc. I'm not looking jaundiced anymore so that's a good sign. Plus I've got some color back in my face because earlier I was looking pale as a ghost. I'm hoping tomorrow will be better.

I didn't get around to doing the dishes like my Dad wanted me to do. I was afraid he was going to be mad at me but I left him a note. I explained that I was sick but I didn't expect him to understand. He tends understands for a couple of days, then he forgets, and he goes back to being inconsiderate. Mom says he is starting to get over the weekend, which is good, because he isn't acting like it. When I came downstairs to make my oatmeal this morning, he didn't even say hello to me when he came in the kitchen. He pretended I wasn't even there. I didn't bother speaking to him because he usually only mumbles under his breath to me.

Well I'm watching an awesome episode of House and I'm exhausted. The past few days have been rough and that has worn me down to the core. I just want to thank everyone who reads this, in some way, each of you has supported me. Y'all rock!

Today has been a tad bit on the frustrating side. I just needed to get a hold of my labs that I got done a few weeks back. My primary care physician wanted me to come in this coming week. She also had apparently made some notes about some more supplements I should be taking. Here's what gets my goat... I'm all for nutritional supplements, but there is a key word "supplements." They are the whole deal, they help to compliment your body and the life style you lead. Can they fix every ailment? No. Will they cure a bacterial infection? No. Might they be able to lower my resting pulse? Probably not. Can a supplement force my stomach to digest food? Not in this lifetime. But I'm all for a little bit of "natural" assistance every now and again.

Maybe I'm old fashioned but I prefer those chemically complex pills that come in the orange bottle. First of all, those little pills are regulated by the FDA. Sometimes the FDA does screw up, but more often than not they do a fairly decent job with prescription medications. Plus you can't blame everything on the FDA, I always research a medication before I take it. That way I'm completely aware of all of the benefits and risks that each medication has. Secondly, those little pills in the cute orange bottles tend to be partially covered by insurance. It's better for my pocket book if it's a generic medication too! Nutritional supplements are not covered by insurance and it's extremely frustrating when someone keeps trying to force their brand on me. Let me decide which brand is right for me, allow me to do my research please.

I'm sorry but herbal supplements are not going to drastically change my blood work. Most of the issues that my body has can basically only be controlled with prescription medication. Carefully timed doses keep me from getting sicker than I already am. I do have my flares where nothing seems to help, but without my prescriptions I would be a heck of a lot sicker. Another thing, people say "Oh herbal supplements are all natural, that means they are good for you!" Would you go outside, stick your face in the ground, and start chewing on some grass like a cow? Seriously? I don't think you would. The grass in your back yard is all natural though, but it's probably not very good for you. Bugs are all natural, would you chew a grass hopper instead of taking some acetaminophen for your headache? I doubt it.

People forget that the lovely medications in the orange bottles are not just some recent invention. Most medications have been researched for many, many years before they actually hit the market. They are tested, tested, and tested again to make sure that they work in the way they are supposed to. It's not like the pharmaceutical companies came up with new medications last week and put them on the market this week. All natural herbal medications are not regulated, the labels can say whatever they want, they could leave out an ingredient if they wanted too! They could over embellish their "facts" claiming that their supplement can do something that it actually cannot. And if you actually read the label it says something along the lines of "This supplement is not regulated by the FDA." I do trust certain brands for supplements though. My rule of thumb is if you can only order it from that company's website, it's probably a not worth it.

I also cannot stress enough to inform your doctor of every single medication you take, whether it is prescription, over the counter, or an all natural supplement. There is always a chance for a medical reaction. Sometimes it may be as simple as reducing the effectiveness of a medication. But it could also cause a life threatening reaction and without the complete list of medications, the doctors could be missing an important clue. You may also be thinking that your pharmacist checks for reactions. They check for reactions based on the list of prescription medications you take.

Remember, you have to be your own advocate and sometimes that means you have to buckle down and do some research. It's your health and you are the first person in charge, doctors come second. You know your body better than anyone else ever will. And if you don't know your body, get to know it. Listen to what it tells you and you will be better off for it. Pay attention to those feelings you get when something is and isn't right. I've gotten so good at paying attention to my body that I can tell what is going to happen 30 minutes before it happens. It's nice to have that reaction time buffer!

Oh and my results from my upper GI endoscopy biopsy came back today. I'm in the clear, go me!

Today I went and saw my cardiac electrophysiologist. Well, I felt like I was never going to see him. I kid you not, I was in the exam room for 45 minutes before he came in. I was falling asleep sitting up because I was so tired of waiting. Luckily, he was much nicer than my old cardiologist. I think my old cardiologist thought he knew everything and because of that, since he couldn't find anything wrong, that I was crazy. Well guess what people? I wasn't crazy! I'm the proud owner of inappropriate sinus tachycardia. It's not life threatening, under normal circumstances I will not drop dead of a heart attack. All it basically means is that my heart is going to beat faster than a normal heart. In order to have it, you have to meet the following criteria:

• All other forms of sinus tachycardia have to be eliminated.
• Supra ventricular tachycardia (SVT) has to be eliminated.
• A resting sinus tachycardia tends to be present.
• A normal P wave is observed.
• Inappropriate heart rate with minimal exertion.
• Hypotension tends to occur.
• Fainting spells.
• The mean heart rate for 24 hours must at least be 95 bpm.

You know the other week when I was in the hospital and they gave me beta blockers? And you know how they sent me home and I ended up right back in the hospital? You want to know why that happened? Because people with IST tend to be immune to beta blockers. IST is so rare that most doctors have never even heard of it. Even my first cardiologist didn't recognize the symptoms. I suppose it pays to go see an cardiac electrophysiologist!

The good news is, I'm not going to die. The bad news is, there is not much they can do for it. If ever it gets to be unbearable, I can have a pace maker put in. They don't like to do it for IST, but it can be done. I can exercise, but I can't go out and run a 5k, I mean unless I feel like reaching 180 bpm? I'll be living with the chest pain, shortness of breath, dizzy feeling for as long as I live. Goody, goody gum drops! It stinks that there is nothing much that can be done but at least I don't have a crazy heart defect that requires surgery. Thank goodness for ativan! So yes, my heart is technically fine, it's just a little overly ambitious when it comes to beating. I've just got to keep my life on the low key side. I suppose running for President is officially out of the question.

On a different note, I am in love with Reglan. It's a medication that is forcing my digestive tract to digest food. I have been hungry a whopping four times in 24 hours! For those of you who know me, hunger is not a feeling I associate with very often. It's so cool to want to eat food, to have it sit OK, to digest it! People really take for granted being able to digest food but I'm in love. I think I'm going to officially get fat now. Even though I'm not supposed to get fat because it's bad for my lupus. What to do, what to do? I suppose I'll keep on with my no process foods diet and take up yoga. I just ate some rice cakes and I'm hungry again! This is too much fun for me! It's like an awesome party in my tummy!

Hm, what to eat next? I suppose I should chew a piece of sugarless gum. That's what people on diets do to keep the cravings away. Oh, and I should drink some more water too!

This morning I went in for my lovely upper GI endoscopy! The waiting room filled up quickly and I could tell the staff was running behind. It didn't help they were experiencing technological difficulties. I felt bad for them because they seemed really overwhelmed! My appointment was about 30 minutes late, but hey, that's life.

I was called back there and was given a lovely hospital gown. It was such a gorgeous shade of blue, I think it looked lovely on me. And it wasn't 3,000 sizes too big! The nurse came back to insert my IV, I let her use my arm that wasn't completely bruised from the past few weeks. Apparently she could still tell where I had been stuck at. Luckily she got a vein the first time. She was really nice to me and before I knew it, I was being rolled back into the room. I was determined to stay somewhat coherent during the procedure. It was my goal. I didn't want to feel anything but I didn't want to be dead to the world either. So here's how it went.

Nurse: How are you feeling today?
Me: I'm alive and kicking.
Nurse: Do you have any circulation issues that would prevent us from putting your bp cuff around your leg?
Me: I have Raynauds if that counts?
***Doctor casually strolls into room***
Doctor: How are you today?
Me: I'm fantastic, not really, but I'm awesome at make believe time.
Doctor: So do you want your Mom to know what's going on after the test?
Me: Unless something horrific happens like you accidentally punch a hole through my stomach with your magical tube, I'll tell her. She tends to get a little spazzy.
Doctor: OK, do you think you will be understand what I write on the discharge sheet?
Me: I can read French, Latin, and Hebrew. I think I can understand your medical jargon.
***Nurse starts injecting me with lovely goodness***
Doctor: It says you are single, never married. 23 is a bit young to get married I suppose.
Me: I don't mind commitment but I don't think anyone would want to commit to me.
Doctor: Don't tell sell yourself short.
Me: I just haven't done much looking here lately. I kind of like someone but it's complicated.
***Doctor starts staring at my vitals and looking at my chart***
***I'm gone, out like a light.***

I failed! I completely failed! I wanted to be awake, it was so evil. Gah! When I woke up I kept feeling like I was watching television when I wasn't. I hope I didn't say anything embarrassing. That is my biggest fear whenever I get sedated. I'm not worried about having my stomach punctured or an allergic reaction. No, I'm worried about saying something odd.

Anyway, my stomach isn't emptying properly, no bueno! I'm now taking Reglan before my meals and I don't know whether it was because I was still slightly sedated or what? But it did make me incredibly "happy" mixed with a touch of sleepiness. I'm better now. I don't know if there will be results in a few days from anything. Tomorrow I have an appointment with an cardiac electrophysiologist. Maybe then he can figure out what is going on with my heart.

Oh and I have news, big news... Drum roll please.

DUNUNUNUNUNUNUNUNUNUNUN!

I have been approved by insurance to see a periodontist! That means insurance will hopefully help cover the surgeries I need. That means I won't have to put a Honda in my mouth, only a Kia! YAY! That's all the news I have for now. Oh and the people from Life Is Good asked for my address today! That's super exciting for me, I love a good surprise! Also I love wheat pita bread heated up in a non stick pan sprayed with some non stick cooking spray. If you let the pita get slightly brown and crispy, take it out of the pan, drizzle with extra virgin olive oil, and add a sprinkle of salt, it equals complete happiness!

This morning at had an appointment with a new gastroenterologist. My old one was a doof, a big ol' doofy doof. He apparently liked "open and shut" cases. Way to go for discrimination and being an underachiever. Isn't part of life is to challenge yourself and expand your horizons? What about continuing education? Doctors should continue with their education throughout their career in order to be up to date on the latest and greatest techniques. I think my old gastroenterologist was the dunce of the class. Or maybe he was really smart, too smart for his own good? Who knows, he's not one of my doctors anymore, thank goodness!

Anyway, I was very, very impressed. First of all, they have early morning appointments, like 7:30 AM. I hate waking up early, once I'm awake I'm usually OK, but it's the part of getting out of bed that takes a while. I am not a big fan of the middle of the day appointments because by that point everything is running late. That means I am waiting longer than I should, my appointment time is being cut short, and I usually end up leaving frustrated for being rushed. The receptionist and nurses were so nice to me, I was surprised. Over the phone they didn't seem too amicable. My gastroenterologist was amazing! He managed to get a hold of the records from my old gastroenterologist. That's something I've been trying to get a hold of for years but no one ever contacted me back! Apparently my old gastroenterologist also messed up quite a bit when it came to my case. He's a bit concerned about some of my blood work too. Hopefully this will get all straightened out soon!

I have an appointment for a esophagogastroduodenoscopy (try saying that five times fast) on Monday morning. In normal people terms it's an upper GI endoscopy. On a side note, my primary care physician just called about some extra lab work that my insurance won't cover. He said "Insurance usually covers it if you have the right code." My answer was "I called my insurance, they don't cover it, I'm not paying for it out of pocket, you have tons of my blood work on file." He wants to work something out, I was hoping the other doctor I'm going to try and see next time would call me, not the sloth man. Back on track, I've had an endoscopy done before but this time they are checking for tightening in my esophagus which is a symptom of scleroderma. Scleroderma is another one of those lovely auto-immune diseases that I'm at risk for developing.

The upper GI endoscopy will make Monday not so fun. I'm hoping they don't overly sedate me, last time I had horrible side effects and they never told me what they gave me. I'm hoping to only be lightly sedated, especially with my heart problems, too much sedation could be very dangerous. Of course I'm sure my fabulous gastroenterologist will keep this in mind. On a side note, he is jealous of my rheumatologist because he uses a tablet PC and he does all of his medical charting electronically. I didn't know it was so expensive to do until today! Heish! I wonder how my rheumy pays for it considering it's just him and his practice. I hope the receptionists are getting paid.

I think these past few weeks have been a bit serious. I've also done a lot of doctor switching. Maybe that's why this little piece of humor makes me chuckle so much! You might consider switching doctors if...

• He calls you at two in the morning "just to talk."
• Instead of rubber surgical gloves he wears oven mitts.
• He keeps accidentally referring to himself as "the defendant."
• He thinks Eastern Medicine was developed in Long Island.
• He keeps accidentally referring to your legs as "drumsticks."
• His examination room is Room 201 at the No-Tell Motel.
• He introduces you to his anesthesiologist, "Doctor Jim Beam."
• Before surgery, he asks if you want this "to go."
• He tries to color your X-rays with crayons.

I'm hoping that my decrepit laptop can handle one last blog post before it decides to die and go to technology heaven. Well, today has been quite informative, not really, but I'm pretending it is. After spending all last week in the hospital, I finally got to see my rheumatologist today. I apologized immensely, I was absolutely mortified about last week. First of all, I'm not a needy person, secondly, I don't cry, thirdly, my Mom put him through hell. Apparently he is cool, calm, and collected but he lost his cool with the idiots at the hospital. I feel terrible even though I know it wasn't my fault. I just keep thinking that it wasn't as bad as I thought it was. Of course my accuracy is not exactly perfect because now I hardly remember any of it. I wrote about it, didn't I?

Well, he doesn't think I have arthritis in my rib cage. He thinks the technician needs to learn how to keep his mouth shut. Um, I've never heard a doctor use profanity until today. And it wasn't directed towards me, thank goodness! Anyway, he thinks it's definitely my heart, he is like 99% sure of it. So I get to see a cardiac electrophysiologist next Tuesday. I got asked if I did recreational drugs, if I had just ran a marathon, or if I had consumed large amounts of energy drinks. He came to the conclusion that since I didn't snort copious amounts of cocaine while running a marathon and sipping a latte, there is something wrong with my heart.

Right now my pulse and blood pressure is being controlled by medication. But he is still worried about the root cause. It's great that right now it's not giving me any hassle but he wants to know what's going on. The cardiologist at the hospital was apprehensive about doing anything invasive. At this point, if it serves a purpose and gets to the root of the problem, go for it. What's so invasive about a small slit, a tiny tube, and a camera? I don't get it. Maybe I'm so used to this sort of stuff where a camera being shoved through my arm doesn't bother me? I know there is a risk but there is a risk for everything. If you read a book, you have the risk of getting a paper cut. If you go on the internet, you have the risk of getting a virus on your computer. If you improperly cook chicken for dinner, you have the risk of getting salmonella poisoning. Seriously people, think about it.

I have a gastroenterologist consult on Friday morning. Joys of joys! I just wish they would go ahead and do the testing on Friday, but no, I will have to get dragged in there next week. I know they do it for the sake of money but wouldn't it be quicker to just run a test? An upper GI endoscopy takes about 20 minutes max. If you count in the prep and sedation time, it goes up to 30 minutes. Recovery takes about 30 minutes to an hour. At that point a doctor doesn't have to be there, just a nurse. So the total time for the test is one hour and thirty minutes. Throw in the fifteen minute consult and someone could be in and out in under two hours. Hello happy doctors, do the tests the same day! That's why you have giant practices! Have doctors who only do certain tests! Save the patient some time and some sanity already!

I'm also waiting to hear about the blood work that I had on Saturday. It wasn't the crazy blood work like my rheumy runs on me. Luckily I didn't have to go get labs done today because I would have had to say "It's not happening, veins are closed for business for a week."

Also, if anyone needs some minor secretarial or organizational work done, please let me know! I'm trying to get back in the work world but unfortunately I can't handle the typical Monday through Friday 9-5 job. I'm looking for 2-3 days a week with flexibility to go to doctors appointments or in case I'm not feeling well. I can handle filing, answering phones, but I can't be on my feet all day. My joints just can't take it. If I'm on my feet all day one day, I'm off my feet the next day. I'm just trying to get my strength back up and I could use a little bit of cash as well.

Sorry I've been slacking on the blog front. I've been beyond exhausted and I think it was all left over from this past week.

On Friday I saw a new GP at the advice of my Godmother. She's all into healing the mind, body, and soul. And in a way, it's a good concept. The place I went to was very, very nice but unfortunately I did not connect with the doctor. First of all, I'm so used to doing everything for myself, answering questions, filling out paperwork, filing authorizations, I do it all. What bothered me the most about this doctor is that in the middle of our consultation, he goes back to the waiting room, gets my Mom, brings her into a separate room, and talks to her. My thought was "Erm, hello? I'm 23 years old. If you want to talk to my Mother, shouldn't you ask my permission first?" I mean that really, really bothered me. Of course he said "Getting your history from one person only allows you to get one part of the history." Well, I may have memory loss but my note taking and history skills are impeccable.

I can also understand wanting be be thorough, I love a thorough doctor. But he was just slow, I'm talking turtle slow. I think a sloth could have moved faster. He would ask me a question, I would answer, and then he would just stare at his notes. Also at this place they are not a big fan of prescription medications. I'm sorry, I love my prescription medications, the ones that work and fix issues. You take away my Promethazine and you will wish you were dead. My body hates me without Plaquenil. I don't like to be overly medicated though. He kept asking me if there was anything else and I said "I still have chest pain." Did he give me any advice or write me a prescription? No. I later found out that he had been an optometrist for like 1,000 years. Yes, he's that old.

What bothered me even more about this place is they kept trying to shove their supplements on me. They had their own recommendations, the brands they trusted. I understand that not all vitamins, minerals, herbs, and supplements are created equally. Those sorts of things are not regulated by the FDA in the same way that prescription medications are. You don't exactly want to buy a supplement from a guy selling them on the street. But I don't have an issue going to a local chain vitamin shop or my local healthy food store to get my supplements. But he kept saying his stuff was supreme and of course my Mom fell into the whole trap. I kept saying "I can get this stuff cheaper else where." But does anyone listen to the 23 year old who can diagnose herself 99.9% of the time and who is correct 99.8% of the time? No.

I'm hoping next time to see a different doctor in the practice. I'm very leery about this new doctor though. I like the place because it isn't your typical doctors office. It's more like a spa. But I'm still apprehensive. Maybe because I'm used to the cold rooms, bright lights, and speedy doctors? Hopefully I will connect better with the other doctor. When I feel one step away from death, I don't want a doctor who is slower than a turtle. What if my heart were to go "thudududududud____thudududududud_____thudududududud____thududud" again? Would he know what to do? It would probably take him ten thousand years to stand up to get over to me.

My next visit I am going to explain that I am willing to try to follow the program they specify, I just have to buy my supplements elsewhere. They charged me $43 for a bottle of cod liver oil because apparently it had higher concentrations of nutrients. Yeah, GNC has a bottle, not the same brand, but practically the same ingredients for $13. I also understand they are trying to promote health and wellness. But at the end of the day, they are a business. Most doctors don't make money off of people who have insurance. A place that treats mind, body, and soul has the extra opportunity to rip you off for the sake of "health." I'm going to take the supplements until I finish them, after that I'll switch over to a brand that I research myself. If it turns out it doesn't work as well, maybe these new age doctors actually know something.

I had to get more labs done on Saturday morning for this new doctor. My veins are shot, closed down, need a rest, and trying to get remodeled. The poor phlebotomist had a heck of a time getting a vein, it took her quite a few times. She felt bad for sticking me but I couldn't feel it. My Mom also wants me to see a new cardiologist but she wants me to go through my rheumy so then he could get me an appointment quicker. I feel bad for my rheumy, my Mom put him through hell and back last week. I feel like I need to make him cookies. Maybe I should? I hope he isn't allergic to anything. I also feel bad about asking him because apparently he referred me to an excellent cardiologist. Excellent for a man perhaps but women already get looked at as if they are crazy. Especially when they have an auto immune disease which are seen as something "all in the head."

In other news, my precious pink i-pod mini saw it's demise on Saturday morning. After serving me faithfully since 2005, seeing me through so much, it's a sad occasion. Unfortunately this past week has been way too expensive because the damn cardiologist kept refusing to admit me. Unfortunately not everything that is wrong with a heart can be found with an EKG and chest x-ray and he refused to do anything invasive. He was like "You're too young for an invasive procedure." I'm sorry, I thought that younger people were more resilient than older people? Oh well, what do I know, I'm only right 99.8% of the time time. So yes, no more i-pod for me. It's sad, that thing has kept me sane through goodness knows how many doctors appointments. I'm feeling quite depressed over it, I know it's stupid to mourn something so material. But the last thing I need is an i-pod blasting Mamma Mia into my ears.

Even though I am in love the the RED i-pod mini. I like the fact that even though it's the same price as the other i-pods, it goes towards a good cause. The other colors are quite snazzy though... Too bad all the colors can't go towards something good. I love the blue, pink, and purple too. I need to shut up about an i-pod and focus on figuring out to pay these bills, getting more appointments, and getting my health straightened out. My chest is still hurting me like crazy but I'm beginning to think it will forever...