2019 Thus Far

I have a few friends wanting to know how I’m doing so this is for you. This is the easiest way for me to tell this story in one blow, and also to chronicle it for me. No pretty pictures, just the straight skinny.

We are slightly beyond the half year marker for 2019 and okay, here it is, so far, this year has sucked. That said, here is why-

January, but really, starting in December I began having mild headaches that bloomed just a little more in January along with a cold that went to my lungs. Infection & antibiotic- round 1. February brought a little more headache and some jaw pain. Now, it’s important to note here that I’d been in a gluten slide since the holidays and it often presents with jaw pain (RA in the jaw, actually multiple sites), and this is what I thought was the problem. By the third week of February, I suddenly realized it was not gluten but a toothache! By the time I realized it I was in full-on pain and in need of an emergency dentist visit! I had a tooth that had cracked all the way down and there was an infection. Antibiotic- round 2.

March brought 2 back to back urinary tract infections (apparently caused by my cancer med- Exemestane). Antibiotics- rounds 3 & 4. End of March was my scheduled biologic for my RA- Rituxan. Just a few days later another tooth infection. Antibiotic- round 5. Spoke with my RA guy and we canceled the next Rituxan infusion until my tooth was taken care of… but I had to wait 2 months because of, well, no immune system. And yes, another tooth infection with a really great abscess. Antibiotic- round 6.

I finally made it to the oral surgeon. Let me explain why this happened. I have RA, Osteo, and Inflammatory arthritis in my joints. But my bones, my bones are freakishly strong. It’s my superpower. They are stronger than normal, the other end of the spectrum in spite of all the meds that compromise them, in spite of having done chemo and radiation. “Freakishly strong”- that’s a quote from the doc! But, I digress… what this means to my dentist is that she didn’t want to touch me. You know, medical history, no immune system, and a mouth where all my teeth are tightly cemented to my strong jaw bones. We were talking about wisdom teeth too, and another cracked tooth (thank you chemo), do it all and be “under.” She said I didn’t want to do this awake! Wow. Okay.

I finally get to see the oral surgeon and discuss a plan of action, the tooth has to come out now, even with the abscess (still), which is not normal practice, but it’s never going to get better until it’s out. And we did all this the very next day. Antibiotic- round 7, plus an antibiotic mouth rinse. The two broken teeth had to be cut out with stitches running down nearly under my tongue.

What ensued post surgery is almost indescribable. It’s mid-June. I had my surgery instructions in front of me to read nearly every hour for the next few days because I couldn’t remember what to do- seriously from hour to hour. I had Opiates that I didn’t take other than the first day because they made me vomit, I popped stitches the first day. Ibuprofen did the job well enough anyway.

Autoimmune system diseases have this interesting way of taking a back seat when other bigger things are happening in your body, and mine did. After a week or so though, things are coming back, aches, pains and getting stronger with each day. Head to toes, every joint in my body was freaking out! I could barely move. In fact, the 3 days before my RA appointment on July 1st I was not functioning. It was too painful to move. I did nothing. I couldn’t remember anything, much worse than anything I’ve experienced. I was utterly traumatized.

I walked in with my cane for my RA appointment and slumped into a chair completely exhausted from pain- joint and muscular. I explain what’s been going on and I can’t think. I haven’t been able to think for a couple of weeks. I can’t stand on my legs very long. New swellings in my ankles… I’m crying I’m so miserable. He does joint checks, I’m in an RA flare-up, my entire body!!! Then he does a Fibromyalgia check and for the rest of the appointment, I’m in pain at every poked spot. He’s a thoughtful kind of guy and I’m a good reporter, so we made a plan of action. I don’t remember all of that discussion but I went home with a plan and new script for Prednisone which is used for flare-ups, and he talked about my Fibromyalgia Fog which I’ve never experienced before. The Fibro I’ve had since childhood (before it had a name). He put me on Duloxetine which is an antidepressant (I’m not depressed) but is also used for chronic pain, neuropathy, and helps with Fibromyalgia brain fog. It’s a Serotonin/Norepinephrine drug. I’m game.

The first 3-days on the Duloxetine I was amped, but I’m also on 15 mg of Prednisone too, I had more energy then I’ve had in a year… or two. My muscle pain is quieting down. And my brain is starting to clear. I think you can imagine how amazed I am.

Better living through chemistry, huh?

I have my Rituxan infusion tomorrow and then the follow-up on the 26th. I’m feeling hopeful again. I have so many conflicted emotions about medication, but I would be dead without some of them and wanting to die without the others. The body does not always heal itself. It needs help sometimes.

I’m good with that.

Love ya!

Rrrr….

 

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My Constantly Examined Life

And that’s a good thing.

The unexamined life is not worth living.” Socrates had it right, at least in my book. He also said, “Know Thyself.” Granted, I may overly examine but who’s to say what’s too much? I suppose I feel a reexamination is warranted every single time life slings mud at me. And sometimes my commitment is for shit, but I’ll keep on, vary the program a little and go forth. Or, take on a whole new program I think might fit me better.

Because of some recent issues, and I’ll get to those… I have to explain that during my chemotherapy for breast cancer 4 years ago I had pretty severe chemo brain and aphasia. Words and whole sentences would not come out of my mouth. I could write them but also had difficulty with my fingers (chemo-related neuropathy). Ironic, huh? It was a highly frustrating time as you can imagine. I made a deal with my partner and friends that I talked to regularly that they would wait patiently until I could spit it out, or at least give up- because sometimes those words were just not going to come out. My chemo-brain still exists but has improved over time. I still have days, several at a time usually, that those words won’t come… and it’s worse in the evening. My partner says these times seems to come around periodically. I haven’t figured out a pattern yet, maybe I’m tired, maybe there’s a lot going on. ? I’m on a 6-day’er now. Last night it was a short sentence and I tried 4 times to get that sucker out! I’m already at an acceptance phase with this issue, but sometimes like last night my eyes just tear up! I got an instant hug but let’s not forget how fearful this is. I feel like I’ve been bouncing off the walls lately, hard to focus, and it’s really bothering me. I’ve also had several illnesses in a row so feeling off emotionally too. Where that leaves me… I’m renewing some goals… and I’ll share my books with you because this is a good combination for me.

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First, in the middle is the Law of Attraction Planner. This is my second year with this planner and it has enough room in it to journal if you wanted to, log your food, and every month, week, and day, you can write about your goals, gratitude, what’s working, what’s not… it has everything! On either end are two books/journals from Habit Nest. On the left is “Badass Body Goals” this is new and I’m not going to be using it with their exercise program, rather with DailyOM’s “Chair Yoga for Healing Strength and Mobility (because… hello… I have mobility issues).” On the right is The Morning Sidekick Journal “A science-driven daily planner for building positive life habits.” Habit Nest really puts out GREAT journals, they walk you through the steps in a simple way. No, I get no kickback from plugging these books. These are simply what works for me. Could be you’ll like them too. I got all three on Amazon.

You see, goals are vital. Growing, changing is essential to life, and moving alongside that and inviting change (and acceptance)… crucial! We keep changing until we die, might as well go with it!

I can’t walk a quarter of a city block. I live in the land of RA, osteoarthritis, etc. But I want to again. I want to go for a walk without pain and incapacitating myself for the rest of the day because that’s what happens. It may or may not be possible but I’m going to do what I can to help it happen. I think I can! I also know I have to start out slow. I can do that.

So here I am, needing to be more mindful in everything I do during my wakeful hours. Needing to be gluten-free again because it helps the inflammation – pain. Needing to exercise. Needing to be more mindful about journaling… or at least more thorough.

I’m not afraid of taking stock/examining where I am and how I’m doing… and adjusting accordingly. I’ll let you know how it went in a month.

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Unique, or Not So Much…

I wanted to talk about a problem we all have at one time or another. One of the things I think is a pretty huge pitfall for those with chronic disease(s) is… here it comes… thinking you are unique. Okay, okay, yes we are all unique but sometimes especially when we have chronic illness we think we are SO unique in what we’re going through that no one will understand… and we don’t want to be a burden. So what do we do? We isolate. This is very bad. Yes it is, stop it.

“””

  • Arthritis sufferers include men and women, children and adults. Approximately 350 million people worldwide have arthritis. Nearly 40 million persons in the United States are affected by arthritis, including over a quarter million children!
  • More than 21 million Americans have osteoarthritis. Approximately 2.1 million Americans suffer from rheumatoid arthritis.
  • More than half of those with arthritis are under 65 years of age. Nearly 60% of Americans with arthritis are women.

*** Bullets are from National Arthritis Month / MedicineNet “””

Do you still think you’re unique? In therapy, this would be called “thinking errors,” if you were in recovery it would be called “stinkin thinkin.” Both are self-defeating.

Human beings have an enormous capacity for fooling themselves and sometimes others. I have experience in this matter. Guilty… (who isn’t?) but I’ve been getting better at it since the Great Breast Cancer Fiasco of 2014. I think it was the longevity and subsequent ongoing issues that helped me get past that idea of being unique. In fairness, I’ve learned to share my feelings long ago. That doesn’t mean I wasn’t thinking I special in my illness. My Facebook family which is small (by design) was helpful in immeasurable ways, and at the top of that list they were so supportive and voiced it. Flowers were plastered on my page almost daily- and that kept a little beauty in my life. Sometimes you have to hunt down the light at the end of the tunnel but there it was. I blogged about my experience frequently and held nothing back. It got the “inner chatter” out of me- the fear, the anxiety, the anger, the “poor me.” The simple act of writing about it in detail helped me get through it. I had friends who listened as well, plus an incredible partner. When I look back at those blogs now I’m always struck by how frantic they sound. My partner reminds me how frantic a time it really was. Grammar and punctuation went out the window (hey, I was on drugs and poison). It wasn’t about perfection. It was about screaming into the universe about my fears and horrifying experiences.

On occasion it was eloquent. I was a very sick puppy. And now… I’m still alive and here to write this. 

Dipping further back, circa ‘93. I found myself so desperately unhappy I was suicidal. To my great fortune, this was a time that managed care went for “Talk Therapy” as opposed to now being given a pill (it’s cheaper but the real issues are never addressed). And please realize I understand there are other reasons for antidepressants.

I was in therapy for 3 years (I continued on after insurance stopped at 1-year. I’m such a great supporter of talk therapy! I did an entire life makeover at that time. Not kidding! I redesigned my life and was so much happier for it. It wasn’t painless but eventually got to that point. With what is in your control, if you don’t like it, change it. Do it in increments if you have to. That sounds easy, I know it’s not. It’s difficult to remove the negative or abusive family or friends from your life sometimes, but I felt I had no choice but to do it. I did it to save my own life. I became my “agent of change.”

I mention these two episodes in my life as a point… to purge. There are a myriad of feelings and problems that come with chronic illness. If you’re reading this you already know it. I urge you to talk about it with someone.

You are completely unique, and you aren’t. What’s happening with you happens to millions. For a happier YOU, find an avenue to get that mental indigestion out of you. Talk to friends, find a group, blog, whatever helps! There are a lot of solutions out there and it’s quite possible you’ll never find them if you don’t put forth a little effort. 

Come on…

Do it!

As always, this comes to you with much love!

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My Bone Broth Fast • Part 2

I used to do 24-hour fasts but haven’t visited that behavior in a very long time… I’m talking decades! Born out of frustration with gastroenterologists who just utterly failed me, and a worsening condition, it became quite clear I had to take care of me. And besides, isn’t that what they used to do it? I was just so broken and not sleeping more than 2 or 3 hours a night for a very long time… I was so ready physically and emotionally for this fast! The plan was 3-4 days and I was okay with not being able to do the 4 if needed. My bone broth was ready and waiting, I had all my supplies and schedule, I had my step-down food for the elimination diet following the fast.

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Here we go, Day 1 – 10/26/18

I weighed myself right off, weight loss was not the purpose of the fast (though I could seriously use it) but who can ever fast without the scale calling your name? I wanted a baseline for scientific reasons! ❤  I had my bone broth and meds, and I felt fairly good and excited for this day! I had green tea mid-morning as is the usual plan, and I use Choice Organic Genmaicha, along with more bone broth. At noon I decided to make a little something special so I used Almond Breeze Almond/Coconut blend, a dollop of Greek Yogurt, and some organic Cacao (superfood!) powder. Blended it all up and it was like a little treat! I need treats. Water, I need to drink more water. Bone broth. Oolong tea-mild. Bone broth. Water. Kefir. Bone broth. All this worked out well for day one. I felt fine, but noticed my leg muscles needed stretching more, felt they were trying to tell me something. My blood pressure systolic was up a little, pulse down. But wait! There’s more!

The fabulous takeaway- I slept like a baby all night in my own bed.   Zzzz…

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Day 2 – 10/27/18

I wasn’t going to, I was going to wait until after the fast… but… it was calling me! I weighed myself… I weighed the exact same, down to the ounce! <sigh> Did my bone broth 3 times, added in-between was Kefir and Kombucha (not sure about this Kombucha, it seems just a little fizzy enough that it might be stomach harsh, we’ll see how it goes, oh and in case you’re wondering… I rarely drink carbonated drinks, on occasion but usually avoid… because the stomach doesn’t care for them). Back to the fermented drinks, like I mentioned in the last blog, you are killing off bad bacteria… you want to make sure you add in good live cultures. And I’ll take a sec to add in here info about Kefir in case you’re lactose intolerant:  http://lifewaykefir.com/kefir-the-cultured-dairy-beverage-should-be-drinking/

I felt just a little weaker and tired today, not bad, mild-moderate. I remember Dr. Axe saying to take it easy. Not a problem, my body won’t let me do anything else! I got a load of laundry done! Early evening David and I were working on a puzzle and I lost track of time, suddenly it was later evening and BAM! I thought I was going to throw up, crazy bad nausea. I headed to the kitchen heated up my bone broth but also made some hard boiled eggs… and I had one. Neat little packages of protein (I do the pinprick thing to help some gas escape the egg while cooking). So between the both of them, I started to feel better. Followed up with some Kefir… crisis averted. Lesson- pay attention! Don’t lose track of your schedule!

I slept like a baby all night in my own bed.   Zzzz…

Day 3 – 10/28/18

Down 3 pounds 2 oz. My body feels different, my joints hurt- I haven’t taken my Plaquenil for 2 days, but I think I will. My muscles oddly feel a little better. Inflammation going down a bit? I see my RA guy on Thursday so will bring in many questions with me! Pretty much just followed my fast plan today. I also thought about continuing the fast for day 4 but will wait to see how I feel tomorrow. This was an uneventful day. We took a drive, checked out our Herons down at Chambers Creek. They were in the pines waiting for the tide to go out to feed again. There were a few along the water stretching their necks up and enjoying the sun.

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The evening went well, like I said, uneventful and followed my plan.

I slept like a baby all night in my own bed.   Zzzz…

Day 4 – 10/29/18

I didn’t weigh myself, can you believe that? I just forgot! I did my bone broth and meds, but around mid-morning, before the next drink, I decided to introduce some food. My reasons were just from feeling weak, and also worried about taking meds without food. There were just a few, but the combination of them on just a fluid diet brings the possibility of harm to my stomach that I’m trying to heal. I completed the 3 days and I’m happy with that. I made a less than 1-serving of oatmeal in almond milk with a teaspoon of maple syrup. Tasted too sweet!!! I did have my bone broth several times today and decided to add some carrots, okay, 1-carrot that I cooked to complete doneness! Don’t forget, I have a compromised gut so I’m not taking any chances! They tasted different. I’ll come back to this… I will add that a couple of hours afterward I felt like I had rocks in my stomach. The lesson then would be to go s-l-o-w-e-r introducing food. That’s the sum of the food I had, other than that I stuck with the bone broth and Kefir.

Epilogue Day 5 (Current) 10/30/18

  • Pros- I got off Ibuprofen, which was one of the goals… a big one
  • I’m sleeping  (YES!!!)
  • I have no stomach pain or gas
  • I lost a few pounds
  • I can do this again
  • I’m looking forward to other added benefits

The most important thing I learned during this fast was that I COULD fast! I really wasn’t so sure that I could figure this all out with docs and meds and me! So… ‘well done’ for me! I had a friend, Abigail that did a 6-day fast last year and talked about it off and on throughout the year. It’s good to have a connection with someone who has done this, not necessary, but good to have. She told me then and off an on how different things tasted to her. I have found that to be true as well, the oatmeal was too sweet and I used less than I used to! Carrots tasted differently. I know her fast was a very profound experience for her and she recommends it.

My elimination diet for the week will be carrots, some meat and fish proteins. All in very small quantities since I’m getting used to eating again. I had carrots for breakfast. Hey, I can eat whatever I want whenever I want! They sounded good. So, there it is. Of course, I would rather have a latte with beignet or chocolate croissant, but… oh well. Those are out. Which brings up another thing… prior to the fast I had every morning a 16 oz strong French roast coffee with half & half and teaspoon of raw sugar. Now… it’s black. Not sure how long that will last but definitely will not add sugar back into the mix. No one recommends coffee or any caffeine during a fast. Sorry. I’m one of those people that if I don’t have my coffee by 10am in the morning I start a caffeine headache that is growing, relentless, and severe… even when I get coffee back in me at some point. I know others don’t have this problem and good for you. I was not going to have that pain and agony going on while trying to wade the waters of a 3-4 day fast. That would have been failure for sure.

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I admit I’m scared of vegetables. I mean I’m really scared of vegetables! I will try adding one a week and see how that goes. What the heck, I’m afraid of all food but I need to start adding them back in. I will keep a little diary of food and what it does… this is what an elimination diet is, finding out the culprits that make your life miserable!

Right now I’m going to have a little bone broth.

Here is Dr. Axe’s website:   https://draxe.com/bone-broth-fast/fbclid=IwAR2BFkpgfXhE0GgPkAO7o4IbLvJrk6SKAiP8Ju3ih5xggQBN3DZHlZKESkY

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We can’t forget Dr. Mercola’s website, he’s a huge proponent of fasting… frequently!   https://articles.mercola.com/sites/articles/archive/2013/12/16/bone-broth-benefits.aspx

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You know, I admit I used to think these guys were really out there… I would look at their websites on occasion just for alternative ideas regarding health issues I was dealing with. Now, they seem to be the guys that are actually helping me.

I have health issues that are beyond a “heal yourself” reality. But, just maybe… I can make huge improvements that lead to good things happening inside me. Those issues might become not so big. This is what I’m hoping this bone broth fast will do. I’m very hopeful, will pay attention!

If you’re going to do a bone broth fast good luck to you and I hope sharing my experience helps you!

 

My Bone Broth Fast • Part 1

The Prep

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Preamble-

I was on a Plant-Based Whole Foods diet for about a year. I had a few gluten relapses in there but for the most part was plant-based.  I have to say that felt really good physically on this diet and prefer it. Then one day, suddenly, and out of the blue, my entire gastric system freaked out. I was in pain from my mid chest all the way to my pubic bone. I had reflux (always prided myself on the fact that it was the one thing I didn’t have!), stomach pain and burning, epigastric pain and burning, abdominal tenderness and pain. I tried to control this with changing some things in my diet, eliminating some nightshades, obvious stuff. Nope. Even my oncologist did some tests that returned negative. He urged me to see a specialist. It took me a couple months to admit defeat and I finally saw a specialist… it took another 3 months to get in for both a colonoscopy (kaleidoscope) and an endoscopy. Other than some inflammation all was good. What?!? I was diagnosed with Ulcerative Colitis in 2010! He had all the studies from that time. He decided that diagnosis was mostly based on symptoms rather than actual findings. You don’t have pain and reflux for nothing! Gee. Can’t fight the findings, huh? They did give me Protonix and a diagnosis of GERD-Non Erosive and Microscopic Colitis, Non-Specific. Yes, I asked all the questions. In the end… fail.

Pain, gas, bloating, became worse by the day. I couldn’t sleep anymore, pain and gas (so sorry to say), slept on the couch almost nightly for part or the whole night. I was miserable. My lack of sleep caused my eye to twitch almost constantly. Enough is enough. I couldn’t take the VW Bug-sized air pocket in my gastric system anymore. Not some food, but all food freaked my system out now.

Okay, fine. Fuck that.

I made an attempt a year prior with a partial fast and bone broth. The broth was so horrible I couldn’t even choke it down! But I figured out the secret… This is the third time I made my bone broth and I was going to be successful! I let my doctor know, I talked to my pharmacist about one drug in particular. I kept taking vital meds and stopped taking important to me (arthritis), but meds that needed to be taken with food. I was determined to see this through and give it 3-4 days.

Big Bone Broth Tip # 1

The first time I made bone broth, a year ago, I followed the recipe on Dr. Axe’s website: https://draxe.com/recipe/beef-bone-broth/   It tasted horrible and though I got some of it down I just couldn’t do it. Blech! I shudder at the thought. You can cook bones for a couple of days but vegetables… no, na uh. Blech! I thought I would just do the bones and when ready to use I would just add organic chicken broth to it. That worked, but here’s what I found really worked for me.

I use my crock pot, throw the bones in, add filtered water, put it on low and leave it alone for a couple of days. I then use my ladle and jar it up, leave on the counter to cool down, cap it and refrigerate it, or freeze. It’s good when fasting to have about 12 oz 4-5 times a day. When starting the fast I take a jar, save the hard fat at the top (it can be used later for other things and is super nutritious), some always remains in the broth with the marrow, this fat is a good thing, and helps with lasting satiation, energy, and food for the brain.

So… about 12 oz of bone broth with marrow, another 4 oz of chicken broth (or beef or vegetable), a beef bullion cube, and the thing that really made it as good as possible… Miso- about a tablespoon, or to taste. <- I figured this out the first day, and I used Red Miso.

Have a Schedule

Make it, write it down if you need to. I used my phone calendar for this so I could get alerts to remind me to drink! You might find that a little silly but I suck at taking in fluids so need those reminders to help me. I followed the Dr. Axe suggested bone broth schedule: “If you’re wondering how much bone broth to drink, about 12 ounces is the proper serving. You should consume this 12-ounce serving about five times a day — 7 a.m., 10 a.m., 1 p.m., 4 p.m. and 7 p.m., for example.” In between it’s a good idea to take in fermented fluids- Kombucha, Kefir, Miso-which I use in my broth. There are others but these will work for me.

A bone broth fast is a thoughtful couple of days preparation. Do your homework, make your schedule and you’ll have no problem.  Decide how long you want it to be and make sure you think about how you’re going to reintroduce food. I’m doing a food elimination diet post fast since any food doesn’t seem to be my friend right now.

Next will be info from the actual fast!

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The Spoonie Questionaire

Hello, my first name is Ramona. I currently live in the beautiful Pacific Northwest in DuPont, Washington.

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The term “Spoonie” was only recently discovered by me. It’s funny because previously I always warned I had so many “stoops or bend overs in a day.” “The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of living and productive tasks that may result from disability or chronic illness. Wikipedia”

I have previously written a blog chronicling as it happened, my breast cancer experience from mammogram to biopsy to surgery to chemo to radiation and post-treatment. 17 months worth.

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I had also started an arthritis blog a couple of years ago, then decided to move to this blog site and start over here. My blogging is actually more for me to get that inner chatter out there. If it helps someone else all the better!

My official diagnosis relating to this site (there are more) are:

  • Inflammatory Arthritis
  • Seronegative Rheumatoid Arthritis of Multiple Sites
  • Generalized Osteoarthrosis Involving Multiple Sites
  • Primary Osteoarthritis of Right Knee
  • Lumbar Degenerative Disc Disease, Advanced
  • Fibromyalgia
  • Myalgia and Myositis
  • Chemo onset Peripheral Neuropathy

My first onset of both RA and Fibromyalgia was in 1993. I was diagnosed by a well-known Rheumatologist in Tacoma.  I had a run of a 6-year flare-up that was unrelenting. I could barely walk, wore Birkenstocks for these 6 years. I used a cane. I became suicidal at about year 3 and went into therapy for 3 years. I saw death as the only way out of my physical pain. I could not see the light. As miracles sometimes happen, I went into remission in the summer of ’99 and maintained that until 2016. Post-cancer treatment the RA came back with a vengeance!

I mentioned in an earlier blog that my Fibromyalgia can be dated back to my childhood. There are many sprinklings of tears from being hurt by others who were just doing normal childhood fun things like poking. These were very painful for me and I just did not understand why they were being so cruel when they knew it hurt. Of course, I never guessed it didn’t hurt them!

My current med regime related to the above diagnosis is:

  • Methotrexate 2.5 MG Tabs 6 tabs 1 time a week
  • Folic Acid 1 MG Tabs 1 daily
  • Hydroxychloroquine 200 MG Tabs 2 tabs daily
  • Gabapentin 300 MG Caps 3 times daily

When my Neuropathy worsens I take OTC (with doc blessings):

  • Alpha Lipoic Acid 600 MG
  • B-100 Complex Time Release Vitamins

And then…

  • Every 4 months I get two infusions of Rituxan. This has been wonderfully helpful in reducing inflammation in my body and therefore reducing pain. Humira would have been the drug of choice but my recent cancer ruled that one out.

I still rely on a cane, sometimes a walker. After the Rituxan infusion in August, overall, I’m feeling better. Well… except for my back that has been nagging for about a month!

It’s heartbreaking to read other blogs and problems folks have had with doctors and referrals. I have to say I have never encountered this. Ever. My RA doc is compassionate and listens and writes down everything I say. I count myself very fortunate in this regard.

It’s been extremely hard to come to grips with how my body is changing and the inability to do things I once could. For years I’ve shared with David in tears that I feel like I keep giving pieces of myself away. I’ve had resistance for help sometimes because that meant things really were that bad. I’m stubborn sometimes! I can’t stand for very long so even a simple meditative act like preparing dinner can be quite painful if it takes too long. I have to find times that I can sit down and rest in the middle of food prep! Sometimes I will stand there chopping or whatever in tears because I’m in so much pain but can’t stop at that point. Fuck!!! I can only vacuum one room at a time and that’s pushing it. I can’t go for a walk, though I try on occasion, or purposefully walk a small parking lot. I can’t grocery shop now for years. I dress differently than I used to because of mobility issues.

I’m open with how I’m feeling to others. I lay it out there. I can’t go to lunch, I’m in too much pain, or can’t walk well today. I ask people who want to meet up if there are a lot of stairs because I have a lot of trouble with them. Or, if parking is too far from the front door. They don’t know unless I tell them. I’m looking out for me and I WILL TAKE CARE OF ME!

By far my biggest coping still is to wallow in my pain and suffering. Cry, a lot. Seriously, I go with it, I GRIEVE it, I feel it. The trick here for me is to recognize when enough is enough and pull myself out. This works for me. Seriously. I have a vision board next to my bed and when I sit up it’s the first thing I see. I do the affirmations in my head or, if need be because the pain is bad I say them aloud. I’ve gotten really good at distracting myself and pulling myself out of the negative game. More on this later…

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This handsome guy is my partner, best friend, love of my life… etc. He has been a wonderful partner in all of the things that have happened to me in the past several years. What a guy. To his immense credit is his ability to manage his own self-care. He hikes weekly, yearly goes on BIG hikes with another male friend. Then there are minor other things he does. The point is, his caring for himself adds to my life as well… the woman with the “tiny life.” The woman whose body does not function in the morning or in the evening. The woman who is limited in what she’s able to do during the course of the day. Anywhom…

My self-care comes in many different ways. Last year I began a Law of Attraction quest. Having been a counselor myself for my career, I have a perhaps deeper understanding of thought replacement. I understand the adage of-

“We humans, it seems, have anywhere from 12,000 to 60,000 thoughts per day. But according to some research, as many as 98 percent of them are exactly the same as we had the day before. Talk about creatures of habit!  Even more significant, 80 percent of our thoughts are negative.” Jennifer Read Hawthorne

Whether or not you believe this, I believe, in my own experience, that is somewhat close to the truth. The LOA quest was to help with this. Negative thoughts did not help me and kept me stuck in that mindset. Who needs that? I’m not saying I don’t sometimes veer off into negativity… I have some very bad thoughts when dealing with more than reasonable pain that goes on for days… but… I have a better grasp at recognizing it and pulling myself out of it. Positive affirmations do help me! Writing things down helps me, gardening helps me, artsy/craftsy things help me. Creating helps balance the pain, and I swear sometimes helps pull me out of it.

LOA has allowed me to accept what has happened to my body. Before I had radical acceptance- meaning I may not like it, but I accept it as a reality. LOA offered me complete and total acceptance. Enough of that, bottom line- it helped me in many ways and that’s all that matters.

The question of advice to give others just being diagnosed or going through the same illness-   life happens… shit happens… it’s the luck of the draw. Pay attention to what’s happening to your body, write it down so you don’t forget to share with your doctor, in detail. I have at times written things down and given it to my doc and told him to add it to my notes. I expect documentation from my doctors that reflect what I’m telling them. Most insurances have Care Management programs, if you have problems check to see if yours has that program, they will help you. Be persistent but don’t be a pain in the ass. Doctor offices have a low tolerance for that. Be calm, be polite, even be sweet, make your needs known. Understand an office persons limitations, they can only share information with the doc, not much more. You may think you know what’s happening to you… if you don’t hear what you think… you perhaps need to be a little more open. Just make sure you get a really good explanation that you understand, and it’s okay to tell the doc you don’t understand.

Me during chemo and chemo-brain:

Doc- explaining a medical thing… “do you understand?”

Me- No.

Doc- explains again… “do you understand?”

Me- Sorry, no, my brain isn’t getting it!

Doc- again

Me- I don’t get it, and apparently am not going to. Doesn’t make sense. Let’s table this. Call it good. Maybe it will sink in… later.

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The Tiny Life

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My Tiny Life Story

This is how I feel sometimes. I do indeed live a tiny life. This happens to some people who live with chronic illness. And some people don’t have a close, loving, immediate family around them. Oh, I have someone, and he is wonderfully understanding and supportive- I can’t believe my luck there, seriously. I also have some family, though they are spread out. After lifetimes of not doing family, we’re trying to figure it out in our own weird little ways… it’s working so far. It’s primarily through text, sometimes by phone. The point is that I don’t have a lot of people buzzing around me constantly. I designed my life a little that way, and then it got much smaller…

My tiny life began in October of 2014 when I started chemotherapy for Stage 3 breast cancer. I was being treated as though I were Stage 4 because it was pretty advanced for a 3 but not technically a 4. I had two cancers, one was aggressive, it had some rare features and mutations when it spread to my lymph nodes… as if the original wasn’t mutant enough. I was in chemotherapy for 17 months, it’s usually 12, so you get my drift here. When you start chemo you are strongly cautioned to not be around a lot of people, be very aware of who is sick… and don’t do that! It’s best just to not have a lot of people around. Don’t go into crowds, etc. You have a more than compromised immune system. The truth is, when you’re doing chemo, you don’t want to go anywhere anyway.

Thus began my tiny life.

I was starting to have joint problems nearing the end of chemo and was suddenly hurled forward into the second blooming of Rheumatoid Arthritis, and this coupled with Fibromyalgia… do I need to say the words? I was so miserable.

Aside- I was originally diagnosed in mid-1993. Those were some really bad years. Somewhere around ’95, I was dealing with suicidal depression, who wants to live in horrible joint and muscle pain day and night? In a moment of clarity, and a rational friend, I made an attempt to save my own life. I couldn’t do anything about the pain but I could do something about my mind. I went into therapy for 3 years. I’m a great emoter. It was like the door jamb to her office was a magical line that when crossed sent me into tear squirting and willingness to cry my entire life out.  It was the catalyst that pushed me to change my entire life, and I mean completely! Totally! Again, as if by magic… in the summer of 1999, I went into remission. What?!? YES!

Back to the story, there I was, post-cancer treatment and being worked up again for RA. I’m just going to add the little nugget here that chemotherapy and radiation therapy really did a number on me and I have several issues to this day because of it. So, you know… it’s yet another Peggy Lee moment when facing down more bad news. You aren’t seeing it, but I just smiled. Life is ridiculous in what it throws at you. I’ll get back to that.

We started treatment with what I was on years ago (and this is a common treatment plan for RA)- Plaquenil (Hydroxychloroquine), several months later it’s not enough. We add Methotrexate weekly… it’s not enough! Too much unrelenting pain. Folks, I’m a stubborn woman sometimes. When I first walked into that office I told them pain meds are out. Steroids are mostly out but I’m less rigid if we can’t get the pain handled. We have the discussion and I am honest about restless sleep, waking in pain, taking 4 hours or more to get going, changes in how I dress because of inability to move the same. The kitchen is mine enemy! I only say that because I can’t be on my feet very long and it takes way too long to cook and clean. Bottom line: Activities of Daily Living SUCK! Go to bed in pain, wake up in pain… yeah. I don’t want to live this way.

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Big breath. I have a very compassionate RA guy. He acknowledges everything I say. He is the one who coined my phrase- ‘I know your life has been a tiny life for a couple of years now, cancer treatment does that, and I promise I’m going to do everything I possibly can to help that.’

He gets it! I mean, I know he has heard the stories a million times, but he just seems to really understand…

I know I’ve talked about this before, there are things that just happen in life that are beyond our control. We do choose how to view them. I will admit I feel victim-ish sometimes, but I try very hard to cut that shit short. My partner and also my friend, Abigail would agree that I pretty frequently am having new ideas, or doing new things because I think they would help me in some way… physically or mentally. I’ve learned a lot about myself, so I agree with the cartoon, “digging for the bone is the reward.” What you gain in thought, perception, and action is invaluable!

The doc and I start talking about biologics. It’s scary. The drug of choice would have been Humira. It was a no-go because I wasn’t 5 years cancer-free. Because I’m considered a very high risk for cancer recurrence, it is especially avoided. Next on the list- Rituxan (Rituximab). These are infusions given every 6 months. Depending on the person they are 1-2 infusions. If 2 it’s given with 2 weeks between infusions. What this drug does is kills specific B-cells in the body, the ones that cause inflammation. I’m an inflammation-producing machine!!! “It works by turning off a part of the immune system that is not working properly in autoimmune diseases.”

I had my first infusion in January of 2017. None of the infusions held the last 2 months before the next infusion. I was in so much pain, dependent at all times on my cane and sometimes the walker, and when that causes my head to become a really bad neighborhood to be in I start making appointments!  Yeah, baby! This last infusion was given at 4 months. This has seemed to work out well! Of course, I realize about the time I figure everything out something else will change. That’s just the way it is. And you know… I’m okay with that. I always embrace change. Life is not static. Ayn Rand said, “Life is a process of self-sustaining and self-generated action.” Process. Got it.

So I have a tiny life. I’m a little encapsulated by choice, by need. It’s weird and different. Sometimes I want something different, and maybe someday that can happen. That is always the hope.

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 “You are an eternal being now on the pathway of endless unfoldment, never less but always more yourself. Life is not static. It is forever dynamic, forever creating – not something done and finished, but something alive, awake and aware. There is something within you that sings the song of eternity. Listen to it.” Ernest Holmes

The Ultimate Goal

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I had a chat with my sister today, told her about plans for inner adventure. You see, last year in October I decided to embrace the Law of Attraction, got the planner, went off social media for November along with no news, no negative input. It actually did have an impact on me that feels pretty permanent.

I have a pretty insatiable drive for inner growth and understanding, and I’m pretty open to change, or making change. I’m well practiced, so you could also say I’m pretty experienced at it. I shared with her that I had just gotten two books- “A Course in Miracles Made Easy: Mastering the Journey from Fear to Love” (and I’ll add here that I read ACIM back in the 80’s and liked it a lot, learned some things and wanted something a little more practical that I could put into actual use) and “The Morning Sidekick Journal / The Morning Habit Tracker! Create Your Perfect Morning Routine. A Science-Driven Daily Planner for Building Positive Life Habits…”

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There are a lot of journal/workbooks out there but this one spoke to me. Very practical.

My sister asked me why I do all this stuff. What a great question, huh? Well, for me you have to look at the goals that I’ve pretty much settled on, though its fluid until I actually start the workbook.

While I have several little goals, I won’t bore you with those… the big chunks are about being mindful about what goes in my mouth, getting some sort of exercise in daily (I believe in rotation), these two things lead me to my ultimate goal– to feel physically better and therefore happier. Happiness or getting closer to it more frequently is what it’s all about. A Course in Miracles is to help on the spiritual end… as my friend would say- “spear-chul!” This is always important to me.

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I chose this ACIM rather than the big one because I… okay… big admission here… because I feel a little special-ed these days. Chemo took way too many brain cells, and while I’m trying to salvage or retain what I can… I can’t hope for osmosis with the original text, I don’t have that particular capability… I wish. I CAN put this version to work though… I think… we’ll see. Imagine a Cheshire grin here… or don’t… here’s one for you…

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Doing all the things I can to help myself feel better is probably the most important thing I can do in life at this point. I live with pain every day. I have stomach issues. The last 4 years have been the worst for me physically speaking, but I believe I can affect some change in the future. Pain is my number one trigger for going off the rails with food and everything else. I hope to put those moments further or farther between one another until… POOF!

OR… There is always this-

***Pain may stay, but how I think about it can change.

Don’t ever give up. Whether it’s food, exercise, whatever, don’t give up even if you have to try hundreds of times. I must at least be at a hundred times, and that’s because I never give up. Every day is a new day of possibilities, seriously. Don’t wait to be inspired, inspire yourself. Figure out what you need and do what you can to make a change. That light at the end of the tunnel??? It never goes away, it’s always there even when you think it isn’t.

Love to you,

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Rrr…

PS. If you would be so kind, and you are interested in this subject, please scroll to the bottom of the page, Note the “FOLLOW” button, “Click to follow this blog and receive notifications of new posts by email.” Thank you! You can “Like” it as well!

 

 

 

 

 

Sleep (she said with irony…)

First…

 

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Okay then.

Sleep. That’s some elusive stuff right there… am I right? I have slept all through the night without disturbance maybe 2, 3 times tops in the past 26 years. No kidding. Somewhere around December of 1992. Short story- I got sick, was on steroids for months, came out of that and into my first RA flare-up. Things got worse from there, but those are other stories. The point is… I never slept well again. I think it was related to the heavy steroid use for an extended period, but, who knows?

Folks with any arthritis and fibromyalgia will tell you they sleep terribly, fitfully, restlessly, are awake all night or part of it. And, here comes the irony again… their bodies need that good sleep more than anything. Things ache sometimes hurt. I fully awake every time I turn over and I do because something is hurting.

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Our bodies need sleep, that’s when muscles get to relax and the blood supply to them increases. This is when tissue growth and repair happen. If you’re young growth hormone is released. Energy is restored so you can deal with the next day. This is so crucial because pain is so debilitating and zaps the energy right out of you… alas…

I think Dr. Mercola said it best: “Lack of Sleep Can Leave You Functionally Drunk.”

“Poor or insufficient sleep was even found to be the strongest predictor for pain in adults over 50. Interrupted or impaired sleep can also:

  • Increase your risk of heart disease and cancer
  • Harm your brain by halting new neuron production. Sleep deprivation can increase levels of corticosterone (a stress hormone), resulting in fewer new brain cells being created in your hippocampus
  • Contribute to a pre-diabetic, insulin-resistant state, making you feel hungry even if you’ve already eaten, which can lead to weight gain
  • Contribute to premature aging by interfering with your growth hormone production, normally released by your pituitary gland during deep sleep (and during certain types of exercise, such as high-intensity interval training)
  • Increase your risk of dying from any cause”

Here is the Mayo Clinic’s list for restful sleep: https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/sleep/art-20048379

Honestly, lack of sleep for me… I can’t think! I lose a little bit of my physical balance. I’m that “functionally drunk” Dr. Mercola was talking about. I refuse to do the sleeping pill thing. My sleeping ability doesn’t seem to have anything to do with how much energy I expend during the day, what or how much I eat, there is no rhyme or reason to my poor sleep.

Chronological list compiled by Readers Digest (good stuff)-

1. Open Your Shades

Exposure to bright light first thing in the morning stops production of the sleep-inducing hormone melatonin and signals to your body that it’s time to wake up. Outdoor sunlight is best, so you might even want to take a quick walk outside.

2. Make Your Bed

This is a psychological trick aimed at making your bedroom less cluttered — and therefore easier to relax in — come bedtime. You can also quickly put away any junk cluttering your nightstand and dresser.

3. Exercise

Exercise leads to better sleep at night. Many people schedule their full workouts for morning, which makes it easier to also exercise while fasting (an added benefit). If you don’t have time for a full workout, at least do some quick stretching or bodyweight exercises.

4. Take a Walk Outdoors After Lunch

Not only will this increase in physical activity help you sleep later, but taking your walk outdoors gives you more exposure to bright sunlight. Light intensity is measured in lux units, and on any given day, the outdoor lux units will be around 100,000 at noon.

Indoors, the typical average is somewhere between 100 to 2,000 lux units — about two orders of magnitude less. The brightness of the light matters, because your pineal gland produces melatonin roughly in approximation to the contrast of bright sun exposure in the day and complete darkness at night.

If you are in relative darkness all day long, it can’t appreciate the difference and will not optimize your melatonin production. This, in turn, can have some rather significant ramifications for your health and sleep. I take a one-hour walk every day in the bright sunlight on the beach, so along with boosting my vitamin D, I also anchor my circadian rhythm at the same time and I rarely ever have trouble sleeping.

5. Cut Off Your Caffeine

If you’re a coffee drinker, take your last caffeinated sip in the early afternoon (this applies to caffeinated soda, too). The caffeine can linger in your body for hours, blocking a brain chemical called adenosine that would otherwise help you to fall asleep.

6. Consider a Nap

According to Rubin Naiman, Ph. D. a clinical psychologist, author, teacher, and a leader in integrative medicine approaches to sleep and dreams, we’re biologically programmed to nap during the daytime, typically in the middle of the afternoon.

The key is to avoid napping for too long, as this may disrupt your circadian rhythms, which would hurt your sleep instead of help it. The ideal nap time for adults appears to be around 20 minutes (any longer and you’ll enter the deeper stages of sleep and may feel groggy when you wake up).

7. Exercise in the Early Evening (If You Haven’t Already)

The importance of exercise for sleep cannot be overstated, so if you didn’t fit in your workout in the morning, be sure to do so later. There is some debate over how close is too close to bedtime to exercise. For some people, exercising too close to bedtime may keep you awake, but for others even late-night exercise seems to help (not hinder) sleep.

One poll by the National Sleep Foundation found that 83 percent of people said they slept better when they exercised (even late at night) than when they did not, so even if it’s late, you may still want to exercise.8 Let your body be your guide.

8. Take 15 Minutes to Unwind

If you’re stressed, it’s harder to fall asleep and stay asleep. Taking 15 minutes (at least) each day to relax may help your sleep significantly. You may try listening to music, journaling, meditation, chatting with a neighbor or the Emotional Freedom Techniques (EFT). Do whatever works best for you.

9. Eat a Light Dinner and Stop Eating Three Hours Before Bed

If you eat a heavy meal too close to bedtime, your body will have to devote energy to digesting your food when it should be recharging during sleep. As part of Peak Fasting, I also recommend that you stop eating three hours before bed and don’t have your first meal until 13 to 18 hours later.

10. At Sundown, Dim Your Lights (or Use Amber-Colored Glasses)

In the evening (around 8 p.m.), you’ll want to dim your lights and turn off electronic devices. Normally, your brain starts secreting melatonin between 9 p.m. and 10 p.m., and these devices emit light that may stifle that process. After sundown, shift to a low-wattage bulb with yellow, orange or red light if you need illumination.

A salt lamp illuminated by a 5-watt bulb is an ideal solution that will not interfere with your melatonin production. If using a computer or smartphone, install blue light-blocking software like f.lux, which automatically alters the color temperature of your screen as the day goes on, pulling out the blue wavelengths as it gets late.

The easiest solution, which I recently started using myself, however, is to simply use amber-colored glasses that block blue light. I found an Uvex model (S1933X) on Amazon that costs less than $10 and works like a charm to eliminate virtually all blue light. This way you don’t have to worry about installing programs on all your devices or buying special light bulbs for evening use. Once you have your glasses on, it doesn’t matter what light sources you have on in your house.

11. Turn Down the Volume

In the evening hours, you’ll also want to keep noise to a minimum. Noise louder than a normal conversation may stimulate your nervous system and keep you awake. You may want to use a fan or other form of white noise to drown out noise disturbances while you sleep. The exception is listening to soft, soothing music, such as classical, which may actually help you to sleep.9

12. Take a Warm Bath About 1.5 Hours Before Bed

Thermoregulation — your body’s heat distribution system — is strongly linked to sleep cycles. When you sleep, your body’s internal temperature drops to its lowest level, generally about four hours after you fall asleep. Scientists believe a cooler bedroom may therefore be most conducive to sleep, since it mimics your body’s natural temperature drop.

This is also why taking a warm bath 90 to 120 minutes before bedtime may help you sleep; it increases your core body temperature, and when it abruptly drops when you get out of the bath, it signals your body that you are ready for sleep.

13. Adjust Your Bedroom Temperature

While there’s no set consensus as to what temperature will help you sleep the best, in most cases any temperature above 75 degrees Fahrenheit and below 54 degrees F will interfere with your sleep.10 Some experts suggest 65 degrees F is ideal for sleep.

14. Sip a Cup of Chamomile Tea

Chamomile has sedative effects that may help with sleep, which is why chamomile tea is often sipped before bed. One study found that people with insomnia who took a chamomile supplement had improvements in daytime functioning and potential benefits on sleep measures as well.11 You may want to try sipping a cup prior to bedtime to see if it helps you sleep.

15. Get Ready for Bed

A nightly ritual of washing your face, brushing your teeth and getting into your pajamas signals to your mind and body that it’s time for bed. Try to stick with the same hygiene ritual, at the same time, each night.

16. Sleep in Complete Darkness

Once you’re ready to climb into bed, make sure your bedroom is pitch black. The slightest bit of light in your bedroom can disrupt your body’s clock and your pineal gland’s melatonin production. You may want to cover your windows with drapes or blackout shades to achieve this and, if this isn’t possible, wear an eye mask.

Taking these steps daily should help most people to improve their sleep. If you need more help, I suggest reading my Guide to a Good Night’s Sleep for 33 simple tips on improving your sleep. You’ll likely find that small adjustments to your daily routine and sleeping area can go a long way to helping you achieve regular restful sleep.

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Definitions (so we know what we’re talking about)

I thought it would be a good idea to add a short note about definitions. Types of arthritis can be confusing sometimes. This next section is from the Arthritis Foundation at  www.arthritis.org. I thought when it came to definitions I would pluck it right from THE professionals! I encourage a visit there for information of all kinds. There are many types of arthritis, over a hundred I think, but for simplicity, I’ll just stick with the big ones here… okay, okay… the ones that I have. Though, as we get older we all get a little or a lot of Osteoarthritis.

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(RA) Rheumatoid arthritis is an autoimmune disease in which the body’s immune system – which normally protects its health by attacking foreign substances like bacteria and viruses – mistakenly attacks the joints. This creates inflammation that causes the tissue that lines the inside of joints (the synovium) to thicken, resulting in swelling and pain in and around the joints. The synovium makes a fluid that lubricates joints and helps them move smoothly.

Rheumatoid arthritis most commonly affects the joints of the hands, feet, wrists, elbows, knees, and ankles. The joint effect is usually symmetrical. That means if one knee or hand if affected, usually the other one is, too. Because RA also can affect body systems, such as the cardiovascular or respiratory systems, it is called a systemic disease. Systemic means “entire body.

(OA) Sometimes called degenerative joint disease or degenerative arthritis, osteoarthritis is the most common chronic condition of the joints, affecting approximately 27 million Americans. OA can affect any joint, but it occurs most often in knees, hips, lower back and neck, small joints of the fingers and the bases of the thumb and big toe.

In normal joints, a firm, rubbery material called cartilage covers the end of each bone. Cartilage provides a smooth, gliding surface for joint motion and acts as a cushion between the bones. In OA, the cartilage breaks down, causing pain, swelling and problems moving the joint. As OA worsens over time, bones may break down and develop growths called spurs. Bits of bone or cartilage may chip off and float around in the joint. In the body, an inflammatory process occurs and cytokines (proteins) and enzymes develop that further damage the cartilage. In the final stages of OA, the cartilage wears away and bone rubs against bone leading to joint damage and more pain.

Inflammatory arthritis is a group of diseases characterized by inflammation of the joints and often other tissues. These include rheumatoid arthritispsoriatic arthritisankylosing spondylitisjuvenile idiopathic arthritis and systemic lupus erythematosus (lupus) among others.

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(Not Arthritis but…)

Fibromyalgia is a condition associated with widespread chronic pain, fatigue, memory problems and mood changes. Fibromyalgia is not a single disease, but a constellation of symptoms that can be managed. It is not life-threatening and does not lead to muscle or joint damage. 

Fibromyalgia affects more than 3.7 million Americans, the majority of whom are women between the ages of 40 and 75, but it also affects men, young women, and children. People with other rheumatic diseases, such as rheumatoid arthritis or lupus, are at greater risk for fibromyalgia. For example, about 20 to 30 percent of people with rheumatoid arthritis also develop fibromyalgia, although no one knows why.”