Lupus is such a versatile disease and it is great to read and learn about those who are living "normal" lives; but I can't help but feel that somehow the rest of us (so very many) will be forgotten or our struggles glossed over because of the mentality that says, "Look, she/he is able to do __________ and she/he has Lupus." I'm concerned that the subtext to that thought is, "...so maybe it's not that bad."
It is that bad. When you must choose which one or two activities you will perform, and one of those activities is only driving a few miles, getting out of the car to go in and pick up a prescription, then driving back home while you still have the strength to do so, what we are dealing with is that bad. That was my yesterday. I visited my mom in the nursing home for an hour, then went to the pharmacy and drove back home, and that was it for me because I had to rest up in order to be able to prepare dinner. My recovery time was about three hours; and forget about the washing up after eating dinner. Oh, I forgot to include showering and getting dressed before I left the house. Many days, showering and getting dressed is all that can be managed and we spend the day clean, smelling and looking good, but unable to expend any further energy. And that only addresses the Toxic Fatigue (thanks to my sister Purple Lady, Malissa for the term), not the 24/7 Ball of Pain that we happen to also be. My neurologist and I discussed the fact that when referring to a pain scale of 1-10, most people cannot relate to the fact that an "8" is normal for me and doesn't have me clawing the walls and screaming invectives at the Goddess of the Universe. I would be disingenuous, however, if I did not admit that at times I do shed tears, sob even, not only because of the physical pain, but at the emotional pain of sheer frustration that I must live like this.
The latest in my saga is that my medication has begun to erode my vision. Well, that's just dandy, isn't it? None of the medications that we take are side-effect free, but this one has relatively low-level side-effects -- except for that pesky seeing thing -- and has the added benefit of protecting against clotting problems; and the clotting problem is an additional issue that is interfering with my Guns. Dang it! Long story short, must needs drop this med in favor of something less desirable. Told my daughter that I'd prefer to stick with this so that I can keep performing at a higher level (subjectively). Her response was, "Uh, Mom, if you can't see, you will not be performing at a higher level because you won't even be able to drive yourself anywhere." I raised a smart young woman, didn't I?
Anyway, the point of this little piece is to remind you that while I cheer for everyone who is fighting the good fight of whatever incurable disease they might be battling and climbing Mount Kilamanjaro in the process, I'm asking you to please also remember those who are fighting just as hard, but are only able to accomplish maybe one-tenth of what that marathoner or Zumba instructor is able to.
Go well, and stay Fabulous!
Tuesday, September 30, 2014
Friday, September 26, 2014
It's Not Always About Race
I know the killing by police of Michael Brown in Ferguson, Missouri has some residents in an uproar; and I also know that DWB (driving while black) in some places in America is very real. However, when you are a hammer, everything looks like a nail. Case in point:
The St. Louis County police department planned seminars to teach the department how to interact with the media, yet community activists took issue with the titles of the seminars, calling them racist. The titles were "Meet the Animals" and "Meet the 900-Pound Gorilla." Is the media composed of only black people? If not, why on earth would someone "go there" and play the race card? I don't know about you, but I have often heard the media described as such and worse. It would never have crossed my mind that either of those fliers was referring to me because I know that I'm not a gorilla or an animal (well, I am a human animal).
The police department apologized for the titles of the fliers. Why??? If you haven't done anything wrong, you don't need to apologize. Like I said, when you're a hammer, everything looks like a nail. Granted, the police department might be racist and absolutely must be cleaned out if this is so, and that's where the focus needs to be -- on the real problem. When Iyanla Vanzant visited Ferguson, it seemed that she made some real progress and had what I thought were leaders in the community on the right track. What happened to the steps that were laid out and agreed upon? Getting back on point is the thing to do and not just find anything that your eyes happen to fall upon and make it into something that it isn't. There is already too much negative energy in the world; don't add to it.
The St. Louis County police department planned seminars to teach the department how to interact with the media, yet community activists took issue with the titles of the seminars, calling them racist. The titles were "Meet the Animals" and "Meet the 900-Pound Gorilla." Is the media composed of only black people? If not, why on earth would someone "go there" and play the race card? I don't know about you, but I have often heard the media described as such and worse. It would never have crossed my mind that either of those fliers was referring to me because I know that I'm not a gorilla or an animal (well, I am a human animal).
The police department apologized for the titles of the fliers. Why??? If you haven't done anything wrong, you don't need to apologize. Like I said, when you're a hammer, everything looks like a nail. Granted, the police department might be racist and absolutely must be cleaned out if this is so, and that's where the focus needs to be -- on the real problem. When Iyanla Vanzant visited Ferguson, it seemed that she made some real progress and had what I thought were leaders in the community on the right track. What happened to the steps that were laid out and agreed upon? Getting back on point is the thing to do and not just find anything that your eyes happen to fall upon and make it into something that it isn't. There is already too much negative energy in the world; don't add to it.
Monday, August 11, 2014
Kids Eating Healthy
I just read an article in The Boston Globe on the difficulty parents are having on instilling healthy eating habits. It seems that the default of many parents is to make sure that their little ones are "at least" eating something, even if that something is nothing more than calorie-laden, non-nutritious junk food. Uh...another example of letting the patients run the asylum. "But she won't eat anything else, and I have to give her something" is an oft repeated whine. Call me cruel, but when they get hungry they will eat.
I'm not advocating sending your child into the school system with nada because I don't want DSS to come knocking on your door and putting your kids into foster care, but I do heartily suggest that when your children, to whom you have been granted the awesome privilege and responsibility to guide are resistant to what you know to be in their best interests, that you don't simply fold and give in because it's easier. Good parenting is no walk in the park; it is hard work and sometimes requires nerves of steel and a will equally as strong. Those little people who have blessed your life come here as a bundle of evolved synapses and neurons and can run circles around us, mentally -- they just don't have the verbal skills initially to demonstrate it. Don't think that you are damaging their psyche by not allowing them to consume all the wrong things that will adversely affect their health.
Yes, I know that this has become a Twinkie and Big Mac nation, with a healthy dose of Five Guys fries (my favorite) thrown in, and it's alright to indulge the kids sometimes, but the key word is S.O.M.E.T.I.M.E.S...otherwise, you are encouraging and even pushing them down the road to a life of ill health. Is that what you want? No, I didn't think so. So man up, or put your big girl underpants on (as the case may be) and work on leading your young charges down the primrose path to a healthy respect for good nutrition and a strong body. Let the treats be the treats and not the main attraction.
Be well, and have a fantabulous day!!
I'm not advocating sending your child into the school system with nada because I don't want DSS to come knocking on your door and putting your kids into foster care, but I do heartily suggest that when your children, to whom you have been granted the awesome privilege and responsibility to guide are resistant to what you know to be in their best interests, that you don't simply fold and give in because it's easier. Good parenting is no walk in the park; it is hard work and sometimes requires nerves of steel and a will equally as strong. Those little people who have blessed your life come here as a bundle of evolved synapses and neurons and can run circles around us, mentally -- they just don't have the verbal skills initially to demonstrate it. Don't think that you are damaging their psyche by not allowing them to consume all the wrong things that will adversely affect their health.
Yes, I know that this has become a Twinkie and Big Mac nation, with a healthy dose of Five Guys fries (my favorite) thrown in, and it's alright to indulge the kids sometimes, but the key word is S.O.M.E.T.I.M.E.S...otherwise, you are encouraging and even pushing them down the road to a life of ill health. Is that what you want? No, I didn't think so. So man up, or put your big girl underpants on (as the case may be) and work on leading your young charges down the primrose path to a healthy respect for good nutrition and a strong body. Let the treats be the treats and not the main attraction.
Be well, and have a fantabulous day!!
Thursday, July 31, 2014
Living Positively Without Gluten/Wheat
When I first started dealing with Celiac Disease, I was so surprised to discover that wheat is in nearly E.V.E.R.Y.thing! Foods and other items that made absolutely no sense to me included wheat; i.e., the adhesive gum on the backs of stamps and envelopes. Most of use a sponge or some other tool to moisten envelopes these days, but would it even cross your mind that wheat is an ingredient?
Caramel color is another no-no for those of us who must adhere to a wheat- and gluten-free existence in order to remain healthy and more physically comfortable, but it, too is in so very many food and beverages. Thankfully, there are some companies out there who do make palatable and even delicious food and beverages (including gluten-free beer -- yay!), so be sure to check your labels and keep it moving!
I have compiled a Gluten-Free Report that I would love to share with you. Just join this blog with your email address. I promise you that you will not be getting any spam from me, as I have nothing with which to spam you. I have done the report in PDF and in ePub forms.
Enjoy it and I hope it is a tremendous help to you.
Be well.
Caramel color is another no-no for those of us who must adhere to a wheat- and gluten-free existence in order to remain healthy and more physically comfortable, but it, too is in so very many food and beverages. Thankfully, there are some companies out there who do make palatable and even delicious food and beverages (including gluten-free beer -- yay!), so be sure to check your labels and keep it moving!
I have compiled a Gluten-Free Report that I would love to share with you. Just join this blog with your email address. I promise you that you will not be getting any spam from me, as I have nothing with which to spam you. I have done the report in PDF and in ePub forms.
Enjoy it and I hope it is a tremendous help to you.
Thursday, July 24, 2014
Let's Get Down On It!
Do you feel like you wanna dance? I do...http://www.youtube.com/watch?v=FuUg4wJuJio
Wednesday, July 23, 2014
Family
Smiles. Gasps. Tears of joy at recognition;
nostalgia at remembrance of a time that was
Kids running, bounding, swinging, joyfully screaming
Happy, happy, happy
Skin and Scalp
Currently on the hunt for organic hair products 'cause I believe that ol' devil, Lupus is prowling around my scalp...
In the meantime here are some highly rated (by me) products for the largest organ on our bodies, the skin:
- Onsen skin care line, particularly the moisturizer and Daily Choice Peel.
- Cococare 100% Coconut Oil...This is great at soothing the scalp, and you can do a total body soothe with it, including the face. If you run out, head to the kitchen and get the coconut oil that you cook with; it will do in a pinch, as well, but of course it costs more, so...
-Basil shower gel by The Body Shop with its divine scent makes me feel like I'm in a peaceful and verdant forest glen; and The Body Shop products are organic -- Yay!
- The Body Shop Duo Body Butter sends those dry skin blues evaporating into thin air. I'm currently loving on the Floral Acai scented Duo, and waiting for Amazon.com to send me some Peach and Strawberry--ooh, la, la.
If you can recommend some organic hair/scalp products, hit me up with the info, please. It will be very much appreciated. This scalp thing is messing with my head (no pun intended!).
Til next time...
Be well.
In the meantime here are some highly rated (by me) products for the largest organ on our bodies, the skin:
- Onsen skin care line, particularly the moisturizer and Daily Choice Peel.
- Cococare 100% Coconut Oil...This is great at soothing the scalp, and you can do a total body soothe with it, including the face. If you run out, head to the kitchen and get the coconut oil that you cook with; it will do in a pinch, as well, but of course it costs more, so...
-Basil shower gel by The Body Shop with its divine scent makes me feel like I'm in a peaceful and verdant forest glen; and The Body Shop products are organic -- Yay!
- The Body Shop Duo Body Butter sends those dry skin blues evaporating into thin air. I'm currently loving on the Floral Acai scented Duo, and waiting for Amazon.com to send me some Peach and Strawberry--ooh, la, la.
If you can recommend some organic hair/scalp products, hit me up with the info, please. It will be very much appreciated. This scalp thing is messing with my head (no pun intended!).
Til next time...
Be well.
Wednesday, July 16, 2014
ALL Kids Need Access to Early Education
Does it incense anyone else that "poor" kids are portrayed as the face of the need for early education?
I will grant you that a home where the money sometimes runs out before the month are much less likely to have bookcases full of books; however, that doesn't mean that those parents are averse to making good use of the public library. I mention this because many have stated that poor children are so far behind because they are not read to on a regular basis. That might be true for some, but let's get out of the habit of painting with such a broad brush. And let's take socio-economic status out of the conversation when we discuss how better to provide a quality education to America's children. Gray matter reacts the same whether the annual income is a six-figure one or an income that falls at or below the recognized poverty-level.
Isn't it a good thing that George Washington Carver didn't know that he couldn't learn because he was poor? I wouldn't have been able to enjoy peanut butter on my apple at lunchtime today. Let's take money (lack thereof) and color out of the equation when we discuss how to better educate our kids and focus on the solutions. If we continually tell a child that she cannot learn because her parents don't have much money, guess what happens...she begins to believe that lie, so it's one of those self-fulfilling prophecies. We all know that children are like sponges and they absorb what's thrown at them. Let's give them encouragement and the opportunity to learn rather than saddling them with labels and subsequent low expectations.
I will grant you that a home where the money sometimes runs out before the month are much less likely to have bookcases full of books; however, that doesn't mean that those parents are averse to making good use of the public library. I mention this because many have stated that poor children are so far behind because they are not read to on a regular basis. That might be true for some, but let's get out of the habit of painting with such a broad brush. And let's take socio-economic status out of the conversation when we discuss how better to provide a quality education to America's children. Gray matter reacts the same whether the annual income is a six-figure one or an income that falls at or below the recognized poverty-level.
Isn't it a good thing that George Washington Carver didn't know that he couldn't learn because he was poor? I wouldn't have been able to enjoy peanut butter on my apple at lunchtime today. Let's take money (lack thereof) and color out of the equation when we discuss how to better educate our kids and focus on the solutions. If we continually tell a child that she cannot learn because her parents don't have much money, guess what happens...she begins to believe that lie, so it's one of those self-fulfilling prophecies. We all know that children are like sponges and they absorb what's thrown at them. Let's give them encouragement and the opportunity to learn rather than saddling them with labels and subsequent low expectations.
Uh, Are You a Clone?
I admit it...I am absolutely hooked on Orphan Black, presented by BBC America. Granted, I am an official Anglophile -- movies, television programs, books/audiobooks, but this show really snatches you in... Can you imagine human clones as a reality?! I can; I do. I fully believe that there are cloned animals and people among us. We are already informed (sometimes) about the GMO foods, but since cloned human beings are illegal, of course "they" aren't going to clue us in on that...nevertheless, "Orphan Black" is not as far out as we might like to think. Gives you pause when more than one someone tells you that there is another person who looks exactly like you, huh? Within one week, I was told of someone "who looks exactly like you!"
For those of us who weren't blessed (I know that's debatable) with siblings, we might enjoy discovering another one or two (or nine, as on "Orphan Black," thus far) of ourselves to hang out and enjoy being close with. I've always been sad that I didn't have siblings, and I'm just as sad, six-plus decades in as I was at two decades in.
Well, time to catch up on some more Ophan Black episodes.
For those of us who weren't blessed (I know that's debatable) with siblings, we might enjoy discovering another one or two (or nine, as on "Orphan Black," thus far) of ourselves to hang out and enjoy being close with. I've always been sad that I didn't have siblings, and I'm just as sad, six-plus decades in as I was at two decades in.
Well, time to catch up on some more Ophan Black episodes.
Shadows of Yesterday and Frames of Today
Good memories are evoking such nostalgia in me today.
I just spent an extra-long weekend with my grandson in Boston, and it was such a wonderful time. His squeal of "Nana!!" and the way his eyes lit up when he saw me at the door sent me over the moon. Of course, he had to pull out every toy that he loves to show to his Nana and he was going like a train engine right up until he just dove into sleep, seemingly while he was still talking. Would that the visit could have been much, much longer. It feels so good to be wrapped in a child's love -- love from a child has such a special quality, doesn't it? It is as clear as good crystal and as pure a water from a mountain stream.
The reason for the visit was to celebrate the 40th (!) birthday of my youngest. My fabulous
daughter-in-law was throwing her wonderful husband a surprise birthday party, and his dad and I were part of the surprise. I was taken back to the day he was born and the amazing reality of how time passes at warp speed.
If you have young ones, hold tightly to the memories that you are creating. Capture them on film (not just with your iPhone or digital camera), and allow them to embed deeply within the recesses of your brain. Open your heart as widely as possible and remind yourself that time is fleeting.
I just spent an extra-long weekend with my grandson in Boston, and it was such a wonderful time. His squeal of "Nana!!" and the way his eyes lit up when he saw me at the door sent me over the moon. Of course, he had to pull out every toy that he loves to show to his Nana and he was going like a train engine right up until he just dove into sleep, seemingly while he was still talking. Would that the visit could have been much, much longer. It feels so good to be wrapped in a child's love -- love from a child has such a special quality, doesn't it? It is as clear as good crystal and as pure a water from a mountain stream.
The reason for the visit was to celebrate the 40th (!) birthday of my youngest. My fabulous
daughter-in-law was throwing her wonderful husband a surprise birthday party, and his dad and I were part of the surprise. I was taken back to the day he was born and the amazing reality of how time passes at warp speed.
If you have young ones, hold tightly to the memories that you are creating. Capture them on film (not just with your iPhone or digital camera), and allow them to embed deeply within the recesses of your brain. Open your heart as widely as possible and remind yourself that time is fleeting.
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