Month: October 2015

Confusion- Not just a symptom

There are times when you will feel as if, for most of us, you are just not being heard or understood by Doctors. Okay, let me widen that out a bit to just people in general, but mainly Doctors. The days leading up, months really, to my finally getting diagnosed were not happy times. My regular doctor was just not hearing me out, no matter how many times I went to see him about the same issues. Then the second opinion I sought was not helpful either, beyond saying they really had no clue what was wrong with me. Honesty at that moment helped me pause and really just listen to the odd opinions of those around me. Well, to me they seemed odd. Who ever heard of Lupus? Not me.

It was the same way when I was struggling with my pain, body and chest. I really liked my Rheumy. She was super, but she just was not listening. Or maybe I just wasn’t being clear enough. Either way, it took me listening to the advice of HELPFUL forum replies, ie- people who actually read the whole of it and want to help you beyond saying you should go see a doctor. I get that they want me to see a doctor. “I did,” you may feel like crying, or in some cases yelling.

The issue may be YOU. It is not always others who are just not listening. Sometimes we are just not being heard because we are not being clear, or forceful enough. That may surprise some of you that you NEED to be clear and yet tactfully forceful about how you are feeling. If your doctor seems uncaring about your problems, make them more aware of it.

The worst doctor visit I ever had was when I went to see a specialist my Rheumy sent me to. The Specialist was unprofessional, having me wait over an hour, and remarking about it to another client just a few doors down. She even refused to listen to my symptom list, which my Rheumy very clearly told me to share with her, every part of it.

The woman treated me like I was some cry baby idiot/crazy person. In turn I never seen her again. I even went to the hospital and picked up my tests there so that I never had to so much as step foot into that other office. You are paying THEM. Not the other way around. You are coming to them for a service. Be nice, but be firm. You are the client. You do not need to accept bad treatment. For instance, the first thing she noted and wrote down was about my weight. It was clear she was seeing me as a fat person before I opened my mouth. Judgement is not what I pay you for! Plus, I have at least 3 medications that make me gain weight.

The above is a great example of a bad doctor. You do not need to deal with this. If they are really bad, get up and leave. We deserve better treatment, kindness, and COMPASSION!

Now, there are times your symptoms may be driving you batty. You may seem erratic, be constantly frustrated, and even jumpy. This is a good time to take a deep breath, re-asses things, and maybe make a real list of what your are dealing with. Call your doctor, ask them what they think you should do about it. If they don’t make time to speak to you, ask when you can. After 3 days, so long as they are actually working during that time, you should have been able to speak to them. If not, ask for one of the other partners or a referral.

Confusion about the way you are treated and if it is just you can be a fuzzy thing when you are freaking out over your symptoms. Confusion is a symptom, most times, related to just being a Lupie. Don’t give yourself a hard time about this. You did not do this to yourself. Be forgiving. While you are at it, spread some of that forgiveness to anyone whom you may have gotten mad at for not hearing you out. They don’t know what it’s like being you. Yes, they should be more considerate. That goes both ways.

Thank you for your time and remember to just try to breath through it, write every thing down, even minor. Insist that you are heard and seen by the right doctor.  You deserve it. ❤


A very Lupie day

Besides accidentally posting to one blog what I meant to post to the other, my day is officially a very Lupie day. We all have those days in which it feels like nothing we do was right. Or that we are just too fatigued to make anything happen that day. Strange symptoms combined with the fatigue just pushes us over the edge. For days like this, I am glad no one else was around. For the days we go through this funk but are surrounded by others, we should just wear a shirt or pin that clearly states that today is declared a do-over.

I know you Lupies feel me on this. Even now I am wanting to scratch at my face, check to see if there is something crawling on my arm, and I’m meditating the idea of taking extra Prednisone because I feel so badly and my head hurt from the word “Go.” Days like this you want to give up and just go back to bed. Some of you do, and no one wise would judge you for it. I’m sure I would have too today if not for the pain in my head, neck, and hip. It is just a “You can’t win this, so give up” days.

Yet, we don’t give up, do we? Even the Lupus Warrior who climbed back into bed is not really giving up. There are times I have seriously wanted to just die. Namely the days I have Lupus Migraines. (Calling them headaches is a joke and an insult.) Still, we carry on. Why? We know that tomorrow will be a better day. Somehow, some way, we just know that it will be.

For me, the absolute knowledge that one day I will never feel like this again is enough to keep me going. No, I’m not talking about modern science curing us, though that would be great. I’m talking about my personal beliefs. I believe in God. Scriptures like Revelations 21:3,4 keep me hoping. I have faith that I will one day be well, even if I have to wait for the resurrection to be free of my illness.

To each their own. Some of you may cling to tomorrow not so much because you believe it will be better. You do it because you know there are little ones counting on you. You do it because you know how your life is important to others.

Those of you who do not have a faith or a motivation, whom feel alone and even unloved, know that you are wrong. We love you. We care about you. We want you to get through today and tomorrow. I mentioned before about the importance of joining together with others who know your pains. I hope that each of you have taken the chance to reach out and join a site, a group, or a forum that allows you to be able to talk with other Lupies.

When we are surrounded by those who understand us, even if they live in other countries or places, then we are giving ourselves the gift of hope. The wonderful and open people that you encounter will help you with your questions and worries. They will say prayers and just share their love with you.

I often comment on the forums and such that I am party to. It lets others know that I am here and that I am listening if they should need me. I don’t always post much, but just knowing one other person is thing about you makes a world of difference in your life.

If you are having a lupie day, or a Lupie Life for that matter, I want you to reach out to another Lupus Patient and tell them you care. There is more joy in giving than there is in receiving.

Questions, scriptures, or suggested sites are welcome.

Healthy at home eating -Free Recipes

The trouble at times with finding recipes online is that you are not sure if it will taste as good as it looks. Sure, it says you just reduced your sugar intake, that it’s Gluten Free even, but does that mean it’s good?

You are not alone in this battle. You want to make sure whatever you spend your precious spoons (energy) on that it will be worth it. Moreover, if you have a family you need to be sure they will be willing to eat it too. That’s why I’ve been doing my homework.

I found a great wordpress user who features some tasty options to healthy foods your family will actually eat. I also found a few great sites I wanted to share with you. So this post is about YOU, your wallet, because I believe in saving whilest I shop, and your happy digestion.

On that note, I wanted to share a tip with you that I am also sharing with my readers on my other blog:

For a gluten free alternative to tums use: One teaspoon baking soda (GF) in a cup of warm to hot water (don’t burn yourself) with several lemons. It sooths your tummy and helps take care of any unease you may have due to what you may have eaten. The only time this does not work is if you out and out at something bad, poisoned, or not gluten free in the case of you fellow celiacs. At times I had only slight cross contamination, this worked instantly. The times it was a little more I got put right in under two hours. As you are aware that is way better than what could have been.

Now, on to some great sites!

save on GF bread!

Health Plan that makes Sense

In the spirit of trying to help you know where to start to change your diet, I made a starter list of books for you. I included books every Lupus Patient should read. I highly recommend that you check it out. What I did, instead of trying to buy them, was ask my local library if they could get them in. They bought the latest addition of the Lupus Bible just because I asked them to. You would be surprise what happens when you just ask.

One of the first books I read was If you have to wear an Ugly Dress. It gave me a different perspective on my situation. I hope it does the same for you.

WFPB diet and why I am not on it

The Whole Foods and Plant Based diet is just that; real food. Nothing that comes from a carton, a super chain, or from the grocer’s freezer. It’s about foods that are alive. The idea is that real food into our bodies equals energy and life at it’s purest form into us so that we have the potential of being our best selves.

Now if that sounds a little hokey to you then I would suggest two reasons: 1) you are reading into things, and or 2) it sounds extreme to you.

My mother went last year to Africa. Before then she had spent some time with a neighbor of ours. The neighbor was surprised at the fact that neither of us, being “white,” had any problem with being nice to her. We enjoyed her company and mom especially liked learning new ways to cook foods. In the area of Africa, a HUGE continent full of many countries, that she had come from, people of different skin color did not mix. She expected people to see her differently simply because of this. More so, due to her time around people truly ignorant of what Africa is really like, she expected us to have many assumptions about her. We didn’t. Which was more than surprising to her and her family. Going to a small country in Africa, mom was afforded with the option to stay and get to know the locals or to go on safari with the other visitors. Mom chose to hang out with her new friends.

The choice of one day turned in to many that were filled with people who were ashamed to allow mom into their home. This is a country with holes in their toilet paper, if you were fortunate to have toilet paper. They do not have the things locally that my mother, being a westerner, has grown to take for granted. Yet, my mom seen in them the things her life was missing.

Appreciation was top on her list. The people who befriended her, for a lifetime, are people who know the value of what they have. We have stopped seeing real value and have taken to modern convenience over natures true gifts. If you just want a life full of the latest Mod-cons, that’s fine. But why live such a life, or any life, with less than the best foods going into your system?

Bugs- In many African countries it is common place to eat bugs. For a westerner it is a concept seen only in movies, documentaries, or on a dare. Yet we have come to look the same way at the idea of making our own meals. I’m not saying that no one knows how to cook. That’s far from true. But how many of you know what to do with fresh ingredients?

Jamie Oliver is one of my heroes because he realized this exact issue and has stepped up to the plate to do something about it. In a world where people no longer know how to grow their own food, kids can not recognize simple fruits and veggies, and the idea of ordering your meal is much more common place, we need heroes like Jamie Oliver.

Food & Lupus- The really bad thing that most of us deal with, Lupies or not, is budget. We live in a world in which food is cheaper the worst it is for you. That tells me that the “food” is likely not really food at all or at least barely finding place among such charts. It also says that this world has lost touch with the value of a healthy meal. I know far too many people who refuse to eat a salad. Who pull any veggie like objects off their fast foods. People who feel as if they have done a good deed for their bodies by having eaten one piece of fruit for the week. Really? Come on guys! Are we really this foolish with our health? But Wolff, I can’t afford to eat healthy. Okay, I get that. After all, I live on 1/3 of the income I was making when I could work part time. When it comes to budget issues, I understand.

So what’s the big deal? Simple; Food is medicine. If you want to feel better, beat lupus up instead of the other way around, you need to eat better. YOU. That does not mean buying Special K, eating less ice cream, or adding in a small side salad. No, that would be like trying on the first week, then realizing that you didn’t actually change anything other than your sugar intake.

A real solution looks like the WFPB diet. The trouble is that we can not afford it. This is the reason I am not currently on a Vegan WFPB diet. I am eating as Whole Food and as Plant Based as I can. Which means that the most boxed my food gets is me having some boxed penne noodles or some bagged rice. Rice, unless you live near a rice patty, is going to be bagged or boxed. Rice is something I can eat. Just because I chose to eat more plants does not mean that I have given up grains. Maybe I should, but I am just not able to afford enough fruits and veggies to cut out the grain.

How can you cut out grain? It’s actually easier than you may think, so long as you can afford it. I really love a youtube channel called FullyRawKristina. She is absolutely a raw vegan. No exceptions. She makes things that would win over the hardiest of carnivores. The life style she leads is exactly the kind I want to live up to. But I do not have the means. Not just monetarily, but physically. When your budget and your physical health get in the way, what can you do?

SNAP- There are government programs out there that are made to help people like us. People who do not have enough money to eat well and are not able to make more than what we have. Some of you may have less than I do, which puts you in my prayers. (For those who have more, You too are in my prayers, but for wholly different reasons.) Government programs such as SNAP can help you to get more foods, healthy foods.

HELP!- Okay, so you have the food now…um those are pretty. Huh… What do I do with them, Wolff? Do you have a friend? Maybe you have a relative who can come over once a week to help. Perhaps you are already in the care of someone. Ask them for help. No really, you have to ask. You can do this. They can cut up your foods, place them in containers, and label them for you. If fruits and veggies are on hand and cut up, people are proved to be way more likely to eat them. TIP! Fruits and Veggies require a lot more to be eaten than other foods. Why? They are less calories. No small side salads. Think of eating out of the bowl the salad was placed on the table in. That is a real salad. Don’t worry. No one gets fat from fruits and veggies. EVER!

Easy way- This would be my favorite way to do it. My mom loves a hot meal. I love whatever is fast, simple, and takes a lot less clean up. Which is why I have a juicer. A friend, dear to me as life, bought it and sent it to me after she found out I was diagnosed with Lupus. She wanted to help. She felt there had to be something she could do. So she did the best thing she could do; she bought me a really nice juicer. You do not need a super nice juicer. I once had a $20 one from Wal-mart. It worked great. Before that I only had my blender. Now I can juice or use my mom’s vitamix.

Remember the part where someone loves you enough to cut things up? Tell them not to cut off anything, just cut them into pieces the right size for you to put into the top of the Juicer or toss safely into the blender. (Remember that your blender may need you to add ice, water, or some other liquid.) I juice stems and all. I bought the re-boot juice book by Joe, the guy from Fat, Sick, and Nearly dead. Then I realized I didn’t need that. I just needed to use my taste buds. I don’t like beats, but if I put in apple and carrot then I couldn’t taste it. I hate celery, yet it contains lots of water in it so it was good to toss in with strong tasting veggies.

Think more Veggie than you do fruit. That’s going to keep your sugar intake down. Why is that important? We are now very likely to get all sorts of issues, including diabetes. Remember that diabetes is a blood sugar issue, not a fat issue. If your family has a history of the problem or if you have already been warned, listen! If not, fruit on!

But why blend or juice? Your  body uses much less energy to digest it when it is already turned to Juice. No pulp means hardly any energy needed to process your food. Energy is the thing most of us lack. How about we take some of that back??? Not to mention that you are now putting into your body a pure, alive form of energy. You just got two ways of getting more energy just by having someone cut up some stuff for you. Cool, huh?

If you crave hot food, eat a bake potato once in a while or some cooked collards. It wont hurt you. Just be aware of how differently your body reacts to it. As for me, I have a thing for grits. I buy gluten free, organic corn online on Amazon. It gets ground up at home. Then turned into grits, sometimes cornbread, or used in other ways. It was way cheaper than buying store bought corn in any form.

As for those of you who do have the means, please go take back your life one day at a time by giving it the food that has life in it. Don’t choose the easy fast food way. Choose the easy diced veggies in the fridge. Choose a mono meal of your favorite fruit. I gorge myself on cherries when they come in season. My stomach uses little energy because it is all the same consistency. When apple season comes, I can not get enough of them and their wide variety. Cut up peppers are far tastier than chips. After living this way for a few weeks you find you no longer crave the things you used to eat. You start liking things you never had.

It’s actually how chocolate and I finally found each other. No joke, until I went Vegan for a year, I did not like Chocolate. I tolerated it, usually because it was coated over the nut I really wanted. I just never liked the stuff. Vegan changed that. I found vegan chocolates and fell in like. I also now eat things i never would  before.

Even now, not able to budget the Vegan life due to circumstances, I find that I rarely want meat. I am always the one happy to turn up a nose at it in favor of getting more green beans, squash, yams, etc. For me I do really like seafood. It is the only meat I ever do seem to want. Now if even after being vegan, or vegetarian, you seem to really crave meat then you need to consider that you may have an iron issue, like myself, or that you are an O. O blood type craves meat. Eating meat once a week will help you to not crave it all the time. For $10 you can find out your blood type with a at home kit.

Lots to think on. Talk to your doctor and find out more about the benefits of a more WFPB diet. Also, check out the links below:

Random Symptoms that Reoccur

There are many a thing that come up in the life of a Lupie. Symptoms come and go. The tell tale signs of your next flare can and will vary. Keeping a journal of them is the only way to truly keep track. There can no longer be a reliance upon ones memory alone. It, surely, will fail you. There will be times you do not recall what you were doing or that you had in fact already done things. It comes and goes, this fugue state of uncertainty. What does not leave you is the feeling that you are never entirely in control of yourself any longer.

I used to be a person of infinite patience. To rouse me into reply to another was nearly unheard of. Lupus took that from me, among other things. Now days it is my emotions that seem to be like loose stringed dogs. I pull at the strings, urgently trying to reel them in. The string snaps, a blink of an eye has passed, and the things which never would cross my lips, let alone my mind, are spewed out. The recipients are just as surprised as I. The trouble is that I had not spoken anything that was not true, yet everything that was best unsaid. Certainly best not said in such tones and force. What am I to do but apologize? The apology is lack due to the fact that I said nothing untrue, nothing that was of the past beyond trademark observations of the other. It is of no use. The other person almost always is unwilling to accept that it was not me, but my condition to blame. Though I rarely say such a thing as “I was not myself” or “Lupus reared it’s ugly head.” No, for these sound so much just an excuse to someone who knows Nothing of what it is to feel untethered by a disease you are at the mercy to.

Each of us will have symptoms that come, and symptoms that reoccur. Some we may have once a year, others once a day. The strange ones are the hardest to explain to ourselves or others. Not being able to eat because everything tastes like earwax.  A metallic taste. A rash in your mouth from the same food or drink you had hundreds of times before. An itch that will not be sated. A worry that something is about to happen, that just will not leave you. The mental certainty that your doctor has given you a placebo. A sudden inability to speak. The severe pain in your hand that will not subside. An ache at the back of your head that feels as if someone has hit you with a 2×4 or baseball bat. Or the excruciating pain in your head that feels as if it is being smashed in and pushed out all at once. No memory of a conversation you had. Insomnia.Etc.

Perhaps the above my seem strange. Maybe you are familiar with one or two. Perhaps more. For me, each of the above are reoccurring symptoms. At this moment I am feeling the pain as if someone hit me in the back of my head and neck. It will increase and I will eventually turn to one of my many ice packs in order to get the pain to subside. If it continues for more than a day then my lower back starts hurting too. I get it every three weeks, sometimes more. My doctor has no answer as to why.

I read the stories of other Lupies who were cooking food for their families. Three times, their families inform them, they had asked the same questions. They go into an emotional fit, a small outburst. Then it’s finished. They have to rest. Their families understand, some say. Others, like me, are surrounded by people who are unwilling to realize that it is not us but the disease at play. It victimizes us double in these circumstances, regardless if our loved ones understand or not. To know that they can never know what to expect from you, and are perhaps always weary of you, is painful and frustrating. Especially so because we never know what to expect.

Yet there are a great number of Lupus Patients who read this and are baffled. Why? They do not experience such instances. At least, not to their knowledge.

My purpose is two fold; to be sure you understand you are not alone, and the urgency of keeping track of such things so that you are familiar with them, as is your doctor. You can not get help or know what needs attention unless you keep track of them. There are plenty of ways to do so. I had a journal, a nice one sent to me by one of the many companies trying to push new medicine on to us. That just didn’t work as I could not remember to write in it, let alone where I had placed it. Then I realized how much time I spent with my tablet. I tried to put in a note area for my symptoms. I couldn’t keep track. Then I decided to just note things in my tablet calendar. I almost always had it with me when I went some place, including the doctor’s. So I was sure to have the information. My trouble now is to find a way to get that information organized.

If you are a Lupie with the means to make such a program then please do. I would gladly spend a few dollars on such a thing. Calendar with headers in the date notes that synced up to a chart listing my symptoms to share with my doctor. Better still if it kept charts on frequency. A great idea, surely, that one of you could invest time into.

Crash and burn

When I was still trying to understand my condition, after testing made it clear what I had, I was just a walking jumble of questions. It seemed that nothing had all the answers. No one person had what I needed to know. It was aggravating, to put it mildly. As someone who is more likely to covet knowledge held in your library over the jewels in your bedroom, when I want to know something, NEED to know something, then I stop at nothing to get my answers.

The really tough ones were about my symptoms, ones I never spoke about or simply could not remember to talk about when the time came. There were so many little symptom checkers all over the place that didn’t list every symptom I had. Was this normal? Was that usual? Am I supposed to feel this way? Do others get these issues?

It felt like I was hitting wall after wall. I joined a great online group called Life with Lupus. I found blogs from other Lupus patients, such as Despite Lupus, that helped some. The biggest help actually came from meeting another person, face to face, who had Lupus. Over a simple meal we discussed her symptoms and issues. I got the back story on how she found out she had Lupus. Our stories were so different that I realized something that no one really said aloud; Every patient reacts differently to Lupus.

Finally I understood why I was always tired and confused, and worse was that I was always in pain. The only other Lupus patient I spoke to, besides the one mentioned above, face to face had thought I didn’t have the same type of Lupus as she did because my symptoms seemed so different from hers. She didn’t have constant pain. She was not dealing with major scars on her face from the terrible rashes. Her hands did not hurt, nor did they have scars and bleeding. Her symptoms where more toward the tiredness and confusion. She had concentration issues and rarely had any flare ups. Her symptoms were mostly in check for over 15 years. She was convinced that she needed to do some research to help me with what she had began to believe was simply a type of skin Lupus that I had.

After talking more, we both came to understand that we had the same type of Lupus; Lupus SLE. The issue was not the diagnosis, but it was the information that was provided to us about Lupus. Another oddity was that as soon as we each started talking about our issues, all three of us got a flare up at the same time. I believe it was cause by the mental exhaustion we went through comparing each case. The first woman nearly died in the hospital from strange symptoms when she found out about her diagnosis. I had spent a year with face rashes no one could help me with and a slowly creeping fatigue that would take away my life as I knew it. The second woman had symptoms that mostly dealt in cognition and mild fatigue that had stayed in check for over 15 years.

Baffling that each of us had the same illness, yet were so vastly different. Two not able to work currently and one working full time. Two with breathing issues and one not. Two with skin rashing, and the other with only mild scalp issues. One with constant pain, one with mild inconstant pains, and the third with only mild discomfort from swelling time to time. It was that way with every symptom we discussed. So different, yet all the same diagnosis. Why? It was easy. Three different women with three different medical and familial histories. Three different life styles and diets. Three different bodies suffering from Lupus SLE, yet each not receiving the same evil little friends of Lupus.

Talking to more people, I found out about the other issues I had. My symptoms were not so obvious to doctors. My Rheumatologist was fantastic, though very unspoken in her findings and thoughts. So when I listed off my various issues (not able to give every one I knew to be of use to her, granted) she did not say that I had some of the other issues I came to find out I had. The first thing she said, beyond Lupus, was a word that started with D and was so…. Well, it sounded like gibberish when she said it. I could never quite grasp what she said. All I knew was that it attacked both my skin and my muscles, namely my leg muscles.

When reading a  blog, the other Lupus patient discussed her issue with Raynauds. I wondered if I had it too. I was not sure if I was simply creating more issues in my own self worry and self doubt or if it really was an issue I had. I decided to keep careful track of the problem. Finally it was my mom who started calling one of my fingers “the ET finger” jokingly that got me discussing the issue with my doctor. The woman on the blog had said that she simply put up with the problem and that she decided not to take medicine for it. I wondered if I was being a wimp about it. I tried to just ignore it, but when I spoke to my doctor it was because it no longer could be ignored. The trouble was that it hurt so much I would start yelling at my fingers for hurting and could not sleep because of the pain and cold of my fingers. I wanted to bite them off. No joke, I actually thought about it. They hurt that badly.

The medicine my doctor gave me was simple. It started working quickly. Lesson? Don’t psych yourself out. If it is not usual to YOU then it is not usual. It is not normal and needs to be dealt with. If your doctor, Rheumatologist, says not to worry about it but you keep having a problem: TELL THEM! You are not a wimp. You are not someone who is just freaking out. I’m not saying there will not be times here and there when you are in fact just worrying over nothing. I’m saying you should be your own health Advocate.

I have had to point out things several times that my doctor other wise would not have diagnosed me with or focused on. I have to deal with things that I really wish I did not need to, but the good thing is that they are being handled. Don’t just ignore a problem and wish it away. That does not work. If you have symptoms, write them down. Keep track of them. Do some research on the internet. I love checking out pictures on google of things other patients posted. I compare rashes, symptoms, etc. That’s another reason I like being part of Life with Lupus. I’m going to put the link below for you to check that out. You can say what is really going on and the other patients will talk to you. Even if all you are able to do is rant, they will listen.

If you don’t deal with your symptoms and issues you will crash and then your symptoms will get way worse. It’s like ignoring your body when you have a fever. The fever does not just go away. You have to do something about it. Treat it.

Speaking of Fevers, one of the things I quickly found out was that I could not take regular medicines, such as asprine, while on the medications assigned by my doctor. Web-MD and even the actual websites for the companies that made the medications will list any interactions. The other thing I did was develop a healthy relationship with my Pharmacist.  Did you know that your doctor does not know much about the medications you are being prescribed unless they personally take them? They are paid to push certain medications. A general list is given of appropriate medications that work with your needs. They have a very basic knowledge, and each specialist has a unique understanding according to their specialty. But the person you are expected to discuss your medications with is not your doctor. Your friendly Pharmacist went to special schooling just to get their degree.

Allen, my pharmacist, is a great guy. Any time I get a new medication or want to start taking a supplement, herb, etc, he talks to me about it. Why? He knows ALL of my medications. Not just some, but all of them. He’s even called doctors back to ask why they assigned me one medication when he says I should be taking another. They always agree with him. He knows his stuff. I also took the time to get a few books on natural medicine. Why? Because I can not use the other stuff. No NyQuil or Aspirin or me. Nope. Good bye Excedrin, my old friend. Yarrow, clove, special teas, and the like are now my new combatants against the problems that ail me. That and a good many ice packs. I have two heat pads but no microwave, so there goes that.

Do your homework.

Ask questions.

Write things down. You are now your own second opinion.

Alternative Blood Transfusion options

I recently was posting on the fabulous group I am part of on Facebook called the Lupus Warriors. If you are not a member you should check them out on the link below. Another link I recommend is going to help those of you who have doctors concerned about your need to have a transfusion. Most people are not aware that taking in the blood of another person is actually very dangerous, not to mention unnatural to your system. Your body already thinks you are the enemy. Why add another enemy into the mix? That is what the foreign blood is, a new enemy. You heal faster and can get out of the hospital the same day if not the day after in most cases. There is nothing but pluses for those who refuse blood. I wanted to share the following link that will provide you with alternatives you can discuss with your doctor. It is important to discuss them now so that when the time comes you have your wishes in place.¬if_t=group_comment

Feeling the deep

As a Lupus SLE patient, we are more prone to depression than say someone who is “normal” or not diagnosed with an incurable disease. It’s actually one of the first concerns my doctor had. Unfortunately for me this was not an issue that would come up then, but had already had a firm grip on me. You do the research and learn that it is actually very common for a Lupus patient to have Depression before ever getting Lupus. In this I mean a diagnosed and or full blown case. After all, there are many little such symptoms before they realize anything major is wrong. It was a life of Chronic migraines and depression for me that lead to my understanding that I was very much allergic to Gluten. . More still as time progressed and I let go of Gluten completely as I adjusted to a Celiac lifestyle. Yet it was the rashes, more than one or even two for me, on my face.  that really signaled the issue. But I want to talk about the depression side. For us it is not as simple the mild depression the “normal” person goes through. It is not as bad, for most of you, as the person who suffers from severe depression. Yet it is a constant knowledge that travels with us everywhere that we roam. To the store, to the kitchen, to the curb to check the mail, or to eat at a friend’s place. This weighted knowledge that we are not going to be cured.  There, I said it. We are not going to be cured. But is that a death sentence? It can if you let it.

Acknowledging that we can die is not the same as willing ourselves to die. Facing death takes guts. Guts are not something you find in the timid or the faint of heart, figuratively. To live with a disease that could kill you at any time takes courage. It also take a lot of management and forethought. If, like me, you are photosensitive, fatigued, and Lupus brought a party to your door (ie; it brought other problems and diseases with it) then you know how frustrating it is to live anything that even looks like a “normal” life.

First order of business is to recognize that there is NO such thing as NORMAL. Yep, I used that foolish word many times. Why? Because who do they, or you, think they are to decide what normal is or is not? Maybe I do not get to live out “the typical American Dream” or any other typical anything, but  I never actually wanted to be typical.

If you do want typical and some kind of normal, You are not alone. Nor are you to be ashamed of that. Nope. It just means you need to redefine what YOUR normal is. How can you achieve it without causing a flare-up? How can you set realistic goals that do not make your doctor give you stern looks at your next check up?

You may be asking; What does all this have to do with depression? Good questions, I am so glad you were paying attention. If not, don’t worry, we are lupiies! Depression is less likely to hit us, or at least less likely to steal away OUR normal if we do a few things to keep it from happening. I was a work-a-holic, super bouncy and very active person whom every one knew as vivacious and always up for an adventure. Strange as it may sound for an admitted introvert.

1- Grieve! This one was hard for me. Harder than I think anything ever was. I had to admit that life was going to change. For me it was a big change, which hit hard and drastically. I went from being able to bike from work and home to not able to get out of my bed. Things got better, but that took time. Time is what you have to agree to give yourself. Before you can move forward, really move forward, you have to say goodbye to your old life style and your old life expectations. You are no longer that person, physically. That person could do more, had more energy, more ability, and more opportunities. Yes, you may get angry at yourself, as I had, feeling that you wasted so much. Getting angry helped only to fuel me not to waste any more time. I became determined. But to get to that new and determined me I had to grieve for the old me. I thought about all the things that Lupus had STOLEN from me. I made a list of things I couldn’t do. I wanted to work up to being able to do those things again, even if just in a lessor way. It started small, actually with just brushing my teeth. That grew to other things. Now I can sew again, not often, but it makes me feel more myself when I can.

2. Time. Time wounds all heals. Right? Yep, that’s how it feels. As a Lupie it can feel as if one thing after the other is happening. You seem to fall apart at times, mentally and physically, if not emotionally. That’s okay. No, really, it is. You are human, you know. We are not perfect, though I admit to struggling with that idea after a life of being an over achiever. Now I feel at times like a worthless, useless, limited lump of Lupie. That’s okay too. I am human and I am going to feel that way from time to time. Everyone does. I just have more reasons to feel that way, better excuses. I hate excuses, which is why I had to decide to give myself time. Permission. That sounds odd until you really think about it. You must decide to give yourself, YOU, permission to not be okay. You must now give yourself, yes you, permission to take time to get better. Let me give you a great example of how you, like most people, have likely been not giving yourself permission for this very thing. The last time you had a cold or the flue, did you call in sick to work the entire time you were sick? Did you know that the average cold or flu takes at least 7 days to work through your system? (that just doubled, by the way) Most likely you just thought about it and had to admit that you worked most of those days. “I can’t afford to!” Right, because this world demands that you must go serve your employer first and foremost. Did you know that only 30 years ago that was unheard of. People did not go to work sick unless they were the stubborn kind who refused to lay down for even death. Now it is common place to be expected to buy the over the counter medication that allows you to keep on working, even though your body is clearly telling you it needs rest! Your doctor will tell you that as a Lupie you can no longer ignore that. You MUST give your body rest. Yes, I said MUST. Why? Flares. One day of rest could mean not having two weeks flares that cause you to be resting.

Is it just flares you have to worry about? No. Your body is now on a life long course of feeling like you have the flu.  How much you rest or how well you care for yourself depends on how bad those symptoms of yours will be getting. A rash on the back of the leg is a clear sign you need to get to bed now. Each of us have our own signs and symptoms to let us know that Lupus is about to rear it’s ugly head. The trick is knowing how much rest and how much work. This is not an over the night or over the week scheduling issue. It is a life long balancing act.  You need to give yourself permission to make a mistake, to rest, to just say NO. Try it. “NO.” “No, dear, I will not be able to do that. But thank you for asking.” “I am not able to join in right now, but I look forward to seeing you soon.” “Sorry, sir, I will not be able to pick that shift up.” “Honey, I would love to, but now is a bad time.” Saying no does not make you mean or ungrateful, or less lovable. It means you are being responsible and making a way for you to be able to do things in the future by caring for yourself now.