Arthritis

Fighting through the fog..

Favim_com-18493So this weekend I was able to reflect on many things and reflect I did…Unfortunately I was admitted to the hospital on Saturday. I have battled fibromalaygia for 7 years and often the chronic pain I experience is unbearable! I am always in pain, however some days, I have what is referred to as a flare. My children often push me to go to the ER on my  worst days and this weekend I obliged…even though I knew it would not be pretty…My intense pain is always met with a shot…in my hip.  Its not fun as you can imagine, but I have pushed through for many years.

This weekend, I felt different…the doctor informed me that I would be staying over night, because my blood pressure was low. Needless to say over night, turned into a weekend and I reflected….Although I often keep my struggles private…I  have learned that crosses can not be beared alone and as I sat in the hospital bed…several reminders were dropped into my spirit.

I thought back over my life, my journey, my accomplishments and I was reminded about all I have given and done for others over my time here on earth…its been too much too count. I was reminded that I must take a little more time for me..I was reminded that I was expendable and also informed that I was not getting any younger. Reminded that some things are not that important and that some people are very important!

Reminded that I must not continue to give until I am depleted…My 2015 resolution was once again dicphered and I analyzed it well.   I fought through the fog of fibro and will continue to fight…

I was thankful for the family and friends who checked up on me.. the ones who reminded me of all the “reminders” I often forget about,,,grateful for the texts and phone calls.

This post is simply a reminder to each of you that life is simply what you make it…live it and live it well, beacuse you only have one and that “one” is valued by many.

Peace, Love & Empowerment

Steph

http://www.I-Speak-Female.com

http://www.virtuousvibes.com

Is this mic on…?

Gidget

Gidget, my not-so-evil sidekick and world-domination dog.

Hello, world. 🙂 My name is Tymber Dalton, and I’m a spoonie.

(Hi, Tymber…)

I’m glad to be a new contributor for FighterZine. It’s not much of a stretch for me, really, since I’m living with fibromyalgia, chronic fatigue syndrome, arthritis—and I’m a writer. (Yes, as in it’s on my IRS forms and everything.) I’ve been blogging off and on about my journey through this chronic condition on my regular blog. I’m lucky that I work at home, because there are plenty of days I spend in my PJs , on the couch or in bed with my laptop, and never make it to my desk.

No, I’m not making Stephen King money. (I WISH!)  Far from it. One of the biggest perks of this job is the dress code. Lest you think I’m glamorous, keep in mind it almost takes an act of Congress to get me into a bra and shoes that aren’t a brand that rhyme with “rocks.” (Yes, if I wear a bra and real shoes in your honor, you ARE special.)

Starting out with a fabulous doctor, who is the one who diagnosed me when my fatigue got so debilitating that a trip to the grocery store would send me to bed for the rest of the day, was a lucky break. I’d heard of fibro, and CFS, but had no idea what they were. I assumed the pain in my hands and back and shoulders—and all over—was “just” arthritis. I could deal with that (usually). The fatigue, however, was scary. He ruled out other issues and started trying me on different things to help with the fatigue and pain.

We found things that absolutely did not work, things that worked for a few months or longer before my body stopped responding to them, and here we are, four years later, with me mostly on a self-Frankensteined mix of prescription meds and homeopathic supplements. I cannot stress enough the importance of having an open-minded and supportive health care professional.

Yes, I started joking last year that I was “Frankensteining” my fibro. It seemed appropriate. On another fibro group I help moderate, someone posted their success with malic acid/magnesium, and I gave it a shot. It seemed to help, so I tried other things. This was after I’d quit Cymbalta—cold-turkey—and had no side effects from that. (I should note I’d been taking it for a couple of years at that point and suspected—correctly—that it had quit working. NOTE: Do not try this at home, I’m not a doctor, and I stopped my medication in the middle of a month so I could go back on it if I experienced side effects.)

I’m one of those fibro spoonies who will have massive issues if my sleep cycle gets disturbed for too long. Poor sleep leads to fatigue and pain, which leads to poor sleep, which leads to…say it with me, fatigue and pain, and so on. Weather fluctuations also trigger my flares, as does excessive stress, or crashing myself with too much physical exertion. I get the “pulled plug” energy lags at times, where I can be fine one minute, and the next it’s like it’s all I can do to stay on my feet. (Those suck big hairy donkey balls even worse than the pain.)

When I look back, I can see where I’ve had fibro symptoms, which I mistakenly thought was “just” arthritis, for years. My Frankensteining came about when I was in a period of time where I had no health insurance. (Which, yes, was another consideration for me dropping the Cymbalta, because I just couldn’t afford to pay for it much longer.) But as I started researching and trying things, I started finding things that gave me some symptom relief. Lucky for me, my doctor worked with me instead of insisting I keep trying pharmaceuticals. His philosophy is if it’s working and not causing harm, go for it.

This includes a few non-traditional things that I’ll talk about in future blogs. (I don’t want to scare you off as readers before I reel you in. No, pay no mind to the rag and bottle of chloroform in my hand. And yes, that big, white, windowless van really DOES have free candy in it. No, seriously. Come closer and look…)

I’m glad to have this opportunity to blog about fibro and related conditions to a larger audience. My hope is that something I write about can help at least one other person on their journey through this. I’ve been blessed with supportive family and friends, competent medical care, and (thanks to Obamacare) I FINALLY have insurance again. That was a huge deal, since I’ve also got some other health issues I have to stay on top of, and a family history of various cancers.

I tend toward snarky (the humorous, not the harmful flavor) and have been known to quote Monty Python out of thin air. (Run away!)

See?

I’ve found that if I can’t have a sense of humor about life, especially in regards to my health, then I would be a pretty miserable person. The things I write for a living are mostly the kinds of books that make “Fifty Shades of Grey” look like “See Spot Run.” LOL I did give one of my heroines fibro and arthritis, and was very gratified to find that many of my readers were able to associate with her.

My posts here will range from everyday life with fibro, covering medical articles, reporting on supplements, patient education—pretty much the whole enchilada. If you have questions or topics you’d like me to cover, feel free to give me a shout-out.

(You sure you don’t want any candy? Well, darn…)

Oh, I’m a native Floridian, have been married to Hubby for over sixteen years, and I’m owned by several pets of various species. Including Gidget, pictured above, who likes to take over my blogging duties every once in a while in her never-ending quest for doggie world domination. (Unfortunately for her, the cats turned out to be absolutely HORRIBLE minions, and the birds couldn’t care less.) When my body allows and I’m not fictitiously wreaking havoc and mayhem with characters in my books, I love shooting skeet, or hitting the indoor pistol range, in addition to spending time with my family, reading, crochet, and other various low-impact pursuits.

(Tymber’s other home on the Web can be found here, but don’t show/tell the kiddies. Or your boss. Or your mom. Or your preacher. Or… You get the idea.)

I try to only write positive things BUT…

This article is probably like “preaching to the converted”, but maybe it is useful for you to share to raise awareness amongst others?

Have you ever been in so much pain that you just wished you could die?

You just lie in bed, too sore to even sleep, just waiting for some meds to kick in. Often you are not taken seriously by others, not even doctors. Then after a week or so, you eventually manage to make it outside the house and drive to the supermarket, you are bombarded by people seeking donations for causes that are like elite illnesses. Where large amounts of funding goes into seeking a cure and people have been educated and recognize it as a legitimate illness. You don’t look sick, how can they tell that in fact large amounts of your meager income have been used to buy meds that are not government funded? How can they tell that you have not got a job, because you are too sick to work, but receive no sickness benefit?

I am sick of people going about cancer as if it is the worst thing that could happen to a person. There are so many people who are in pain, have diseases that you would not even know the names of, who have a disease that doctors haven’t figured out what causes it yet and therefore there is no cure. Fibromyalgia is one such illness, but there are many more chronic illnesses, many immune diseases. Some very young people have rheumatoid arthritis and the only comment they will receive is “oh but you are so young”. People are misinformed and don’t realize that this is different to Osteo arthritis that old people get when their joints wear away (or in some cases, younger people for whom the disease is hereditary).The only treatment is to treat the symptoms with large amounts of drugs. They do not have the support of the community, or in many cases, even the medical community.

For some, the only relief is through medication that is actually a chemotherapy drug. Many people with rheumatoid arthritis will lose their hair and have other terrible side effects from this medication. And yet, as opposed to its use in cancer treatment, they will have to have a tiny dose for the rest of their lives, or as long as their bodies can tolerate it. After this, there is no treatment other than painkillers…yet. So when a person with arthritis loses their hair with the weekly dose of chemo drug, their hair will probably not grow back until they stop taking the drug. So many people say “oh it is only for a short while and when it grows back it will be better than ever”. Yep – for a cancer patient this would be true, but not for an arthritis patient. This is like saying, “never mind, when you are in your eighties your hair will be beautiful, of course you will be in too much pain and won’t be able to go anywhere or do anything, but your hair will bring you joy.”

These scenarios have played out many times over the last couple of decades for me. I have been crippled by pain many times and I have begged my husband “to just shoot me”. I have also been blessed with terrific doctors and close family who have looked after me. I also have had a very attentive team of cats who have spend many hours lying beside me administering purr therapy. I have remained positive (although you wouldn’t realize this from this article, sorry), because I always knew that even though I had to endure bad days, there were also good days. My husband works two jobs and does my work as well, so we get by. I have also been able to minimize my illness and have written extensively about this online and in my books.

But there are people out there who do not have the support I have had. They are misunderstood and alone with their pain. Don’t slap them in the face bombarding them with information about other diseases, you can’t tell by looking at a person just what their problems may be.

If you liked this article and would like to read more articles that I have written I invite you to visit my website

http://www.defianceofillness.co.nz

I am a survivor from a number of illnesses, including Fibromyalgia and Rheumatoid Arthritis. I live happily in defiance of illness with my family on a kiwifruit orchard near Tauranga, New Zealand, living the life I love and doing the things I enjoy and believe are important.

I am the author of “The Crystal Diary” written about my late daughter, published in April 2012. “Living Happily in Defiance of Illness” was published in August 2012, it is healing guidebook for people affected by chronic illness. Both books are available in printed format and the Defiance book is available in EBook format for instant download 🙂

Night-time Amplification

Often in the middle of the night very small problems can seem enormous.

 

Part of the problem is that when we are lying totally still, sore or achy bits are more obvious. No longer are there the distractions that are there in the daytime and our focus comes to bear on the things that are troubling us. The other problem is that we are in a sleepy state, in the change-over between consciousness and sub-consciousness and the issues that we have been able to suppress during the day come back to the forefront of our minds.

 

I have found that with the restless leg syndrome associated with fibromyalgia this is compounded. Also, I have achy feet from arthritis that don’t seem to trouble me in the daytime. My feet seem to be very hot and sometimes swell at night. I think I may find benefit in going to bed with an ice pack. Sometimes the cross-over between rheumatoid arthritis and fibromyalgia can be confusing. Often it is difficult to discern just which condition is at play. Mostly it is both together, as each aggravates the other.

 

The strange thing that has occurred for me this week is that I broke a toe in the middle of the night whilst stumbling around in the dark. Oddly, given a couple of days to settle down after it had been strapped up, it has given me little grief at night, but the other toes and whole feet in general have. To me this puts into perspective just what people affected by arthritis and fibromyalgia and other chronic illnesses put up with. We get used to these little discomforts and it is only when compared with a more common injury that we remember just how much we are affected, but have come to accept as “normal”.

 

During the daytime I have recently had very little pain, as described in my book “Living Happily in Defiance of Illness” I have minimized the effect that arthritis and fibromyalgia have on me and have only had the odd symptom in times of stress. Pain just sneaks in there at night. Although pain is probably too strong a term for it, it is really just discomfort or aches amplified by the still of the night, as it has not warranted the use of pain medication. In fact, it has not even been bad enough to stir me out of my bed to seek an ice pack.

 

The most important thing is to stay calm, remind yourself that small things can be blown out of proportion at night-time. Soft soothing music, meditation or aromatherapy can help, as can ice packs or extra pillows. These may act more as props to soothe your mind, rather than to physically soothe your body, but it is the end result that counts.

 

What symptoms trouble you at night? Do you find that little discomforts that can be ignored in the daytime are amplified at night? I would be interested to hear your comments. Please leave me a message at the bottom of this page.

If you enjoyed this article and would like to read more articles that I have written I invite you to visit my website www.defianceofillness.co.nz

I am a survivor from a number of illnesses, including Fibromyalgia and Rheumatoid Arthritis. I live happily in defiance of illness with my family on a kiwifruit orchard near Tauranga, New Zealand, living the life I love and doing the things I enjoy and believe are important.

I am the author of “The Crystal Diary” written about my late daughter, published in April 2012. “Living Happily in Defiance of Illness” was published in August 2012, it is healing guidebook for people affected by chronic illness. Both books are available in printed format and the Defiance book is available in EBook format for instant download 🙂

 

“I’ll Take “Lupus” for $1000, Alex!”


We’ve all been there. Maybe you encountered a former co-worker or were spotted by a fellow PTO member at the grocery store. You exchange pleasantries and they ask that inevitable question: “How have YOU been? I haven’t seen you in a while. How are things going?” Now, you are faced with THE question: Do I answer the question with the undeniably expected “Oh, fine” and enable “said” individual to go about his/her day…. OR….. do I actually allude to the truth? Do I lower the veil, pull back the curtains and reveal what is REALLY going on.. even if just a little? Or do I maintain that stoic facade, determined to avoid the blank stare that comes after your admission that you have Fibro. “Oh, that’s that thing from the Lyrica commercial!”  “So, it’s like you feel sore sometimes or something, right?” Or you get that continuous series of nods that lets you know that they have NO… and I mean ABSO-FREAKING-LUTELY NO idea what your experience is, how harrowing the pain is that you endure, what crippling effect constant, unrelenting fatigue has on a person’s life when it just won’t give up and can’t be scheduled or even combated. To date, my favorite response is, “So, do you have to take medicine for that … or something?” Now, granted, I give the person credit for asking… but the inquiry really wasn’t one of curiosity, to discover what my reality is, but was dismissive, as if to say “Oh, well…It’ll be okay.” And I don’t want to sound like one of those bitter, “you-can’t-win-no-matter-what-you-say-or-ask” individuals but here’s MY truth: I’ve given birth without drugs of any sort and I’d trade my morning Fibro pain for that any day because, at least, there’s an end in sight, as regards labor pains, and a beautiful reward at the end. No matter what medicine I take for my Fibro pain, it doesn’t remove it completely. I am grateful to just have it silenced enough so that I’m not rocking back and forth or considering really unhealthy alternatives like chasing an entire bottle of Ibuprofen liquigels with a bottle of infant tylenol and “seeing what happens.” Fibromyalgia is complex and its symptoms vary from one fighter to another. But FAR too often, when I DO “take the leap” and tell someone that I’ve been having a difficult time because of a Fibromyalgia flare, the statement is met with an “Oh, please… Who doesn’t have aches and pains?” type response. However, I’ve found that mentioning other illnesses, with similar symptoms and struggles, elicits far more compassion and understanding.

So, here’s my admission: When I DO take the risk and mention some aspect of what I go through to someone who isn’t a dear, close, personal friend, I tell them that I have Lupus.. .and then mention Fibromyalgia, secondarily. Why? Why would I do that? Why would I pass up on the opportunity to inform the person and educate them regarding how extensive Fibromyalgia can be and how far-reaching its wicked tendrils? Because of the guilt – the guilt that I feel for not being enough, the guilt that is compounded by the vacant stares and assumptions that I’m just a complainer who needs to suck it up and do what I need to do and stop making excuses. It’s because of the look that I get when someone without any clue that I cry because of the pain that I suffer from, that I pace the floor at night when I can’t sleep, unable to use the time wisely by ironing because standing in place hurts so badly that I never make it past a few pieces without needing to sit down, the shame that I feel for not being 100% even though my effort each day is nothing less. I give in to it… and I want, for just one moment, to be viewed compassionately and not judgmentally. So, there’s my dirty little secret. I’m not proud of it. But, maybe, by sharing this, I’ll help someone else, who can’t bare the stares, feel a little less alone.