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Default Aug 09, 2021 at 03:39 PM
  #281
Ah jeeze, autocorrect struck..... "try to refrigerate it"? WTF!?!? That should have been reframe it.

Good luck hon.
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Red face Aug 09, 2021 at 03:48 PM
  #282
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Originally Posted by lizardlady View Post
Ah jeeze, autocorrect struck..... "try to refrigerate it"? WTF!?!? That should have been reframe it.

Good luck hon.
Laughter Is The Best Medicine!

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Default Aug 10, 2021 at 05:59 PM
  #283
Folks, I need to vent. This is only tangentially related to fibro.

I am going to lose my chit if I read one more post b!tching about therapists moving back to virtual sessions and how unfair it is to people with mental health problems.

DANG IT WE ARE HUMAN BEINGS TOO!!!! With fibro, CFS, asthma and a crappy immune system I manage to catch ever damned bug that comes along! I am scared chitless at the idea of getting Covid. It POs me to see people whining about therapists seeing clients virtually. Guess what folks? We hate it too but it beats he!! out of dying!

Ok, end of rant.
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Exclamation Aug 11, 2021 at 07:18 AM
  #284
Agree with you 100% @lizardlady!

Selfish Asstwits Suck!

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Default Aug 12, 2021 at 03:55 AM
  #285
I have been getting a lot of spam email lately (a lot more than usual)

many from services I don't even use (paypal, norton anti virus, a diffrent bank etc)

it's annoying

had to buy a new dvd player this week. the one I had finally packed up and stopped laying dvds.

new one's better though, I'm impressed with it..

have too at some point get a new debit card too- old one's about to expire
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Default Aug 12, 2021 at 03:57 AM
  #286
all done online of course

too much pain to bother about going out
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Default Aug 14, 2021 at 09:24 AM
  #287
I really hurt today and it isn't just the back
while I was picking up a dvd from the floor, I put too much pressure on a shelf and it came loose and hit me and I fell

ouchies for sure. I don't want to move from this spot unless I have to
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Default Aug 15, 2021 at 10:45 AM
  #288
I've read differing opinions about whether changes in barometric pressure causes fibro pain. Speaking from what my body has to say about it, it sure does!

There is a tropical storm working up the coast. My body is screaming at me today. *sigh*
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Exclamation Aug 15, 2021 at 11:05 AM
  #289
Gentle hugs pfor you @lizardlady ...

The weather certainly does impact pain levels!

As the low pressure system approaches it clamps down on those joints & connective tissues like a vice grip ...

Once high pressure starts to settle back in, it starts releasing it's hold ...

In the meantime those pain levels are hell-bent on destroying us!

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Default Aug 24, 2021 at 10:49 AM
  #290
Fibro not bad today but arthritis is killing me.
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Red face Aug 24, 2021 at 11:15 AM
  #291
Gentle hugs to you @lizardlady ...

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Default Aug 24, 2021 at 04:38 PM
  #292
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Gentle hugs to you @lizardlady ...

Thanks hon
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Default Aug 25, 2021 at 01:41 PM
  #293
I found out today I might have been exposed to Covid last week. I'm self isolating and seeing how I feel.
Primary question I have is pain and exhaustion caused by Covid or fibro/CFS? What a mess!
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Default Aug 25, 2021 at 07:01 PM
  #294
Sunday got up early, took a shower and scheduled an appointment to have a massage.

I regularly have feet and body massages to help with stress, anxiety, depression and Fibromyalgia tender points. I really enjoyed the massage.

Yesterday, while waiting on my teenager, a lady walked by and I noticed her shirt,

“I absolutely am not trying to fit in.”

I put my window down and complimented the shirt.

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Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
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Red face Aug 26, 2021 at 08:09 AM
  #295
Oh, Dear @lizardlady! ...

I so hope you don't get that crap!

And, you're right about the P&E ...

How to know which is which!

Sending good thoughts your way and keeping pfingers crossed!

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Default Aug 26, 2021 at 09:59 PM
  #296
I had a horrible flare up with two of my rare diseases. I scheduled an emergency appointment with the immunologist on duty.
We discussed Fibromyalgia too. I was concerned my monthly treatments were causing an increase in my Fibromyalgia pain and other symptoms.

I agree to see a dietitian to discuss an anti-inflammatory diet plan. I hate taking a crapload of medication. I agreed to add two new medications and increase the dosage of my monthly injections (Chronic Idiopathic Urticaria) for a period of time.

However I made my rules very clear. No medications that cause certain side effects.

My immunologist, Dr. C., is nice however I do have a good rapport with the other immunologist (Dr. M.) in the practice. She listens and understands why I can’t take sedative antihistamines during the day, why I don’t wanna take medications or treatments that cause hair loss, weight gain, depression or suicidal ideation.

I feel like male nurse practitioners,doctors and specialists don’t get it. Don’t get that mainly women are taking kids (a kid) to school, picking kids up from school, helping with homework, cooking dinner, taking kids to sports activities etc. I don’t get, how they don’t comprehend, patients can’t sleep our lives away.

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Default Aug 27, 2021 at 11:39 AM
  #297
Personally, I encounter a lot of ableism. I have set firm boundaries. I will end friendships, communicating with family members that don’t respect my boundaries and say hateful/harmful comments. I’ve changed healthcare providers/specialists. Peace of mind is priceless.


25 Examples of Ableism to Avoid as an Ally to People With Disabilities

Ableism means “discrimination in favor of able-bodied people.”
As of today, I am officially “totally disabled.” My health has been declining before getting diagnosed with a chronic illness in May 2019 and having to stop work.

It has been devastating to grieve my old life, career and hobbies. And ableist remarks (still fairly common!) are like kicking someone when they are down. Since at least one out of five people will become disabled in their lives — and ableism is still largely unaddressed and unknown — if you are the loved one of someone with a disability, you will want to be aware of how to proceed with compassion. Here is a list of 25 examples of ableism so you can be a good friend / medical practitioner / family member and avoid the harm ableism causes.

1) Minimizing another’s struggle for your comfort. We know it is hard when someone has a disability / chronic illness. But imagine how much harder it is for them. Give them space to talk about it.

2) Discriminating against them for speaking about their diagnosis/challenges, or accusing them of just wanting attention or trying to manipulate others. These ideas are completely ridiculous and rooted in acute ableism. This is likely the hardest thing a person has ever gone through. Sharing is a part of well-being; a little bit of compassion goes a long way.

3) Thinking you understand how a condition affects someone without listening to them and researching their condition. Each person has different experiences and each diagnosis has complex symptoms.

4) Comparing chronic/long-term disabilities to temporary/short-term injuries or illnesses. Getting your tonsils out is not the same at the existential identity crisis or the physical and emotional challenges of facing a potentially lifelong disability.

5) Saying they should just “get over it” or “accept it” without recognizing the immense grief that can come with chronic illness / disability. Again, it is likely the hardest thing a person has gone through and there are a lot of big feelings that need to be expressed. Let the person know you are there for them. “Tough love” attitudes towards someone with a disability are not love at all.

6) Assuming a person is faking an invisible disability. Just. Don’t. No one would choose this. If anything, we are actually faking being well!

7) Avoiding interacting with someone because their disability/illness makes you uncomfortable. Try “I know this must be so hard for you” and ask how they would best like to be supported. Offering specific things such as “I can bring soup” or “I am stopping at the pharmacy, do you need anything?” can help you feel supportive in a concrete way.

8) Presuming disabled people can’t speak for themselves. Always speak directly to the person rather than their caregiver.

9) Thinking they should be able to do everything for themselves rather than offering or validating community care. This individualistic culture harms us all — imagine how much it harms those who aren’t able to fully function physically/mentally. We could often use a hand with many things. Don’t shame someone for not being able to do it all.

10) Thinking those with disabilities are a leech on the system. Everyone deserves to live. Enough said.

11) Inferring someone is lazy, unmotivated or not trying hard enough to get better. Saying they just need to “buck up” or try ____ treatment, eat ____ food or do more yoga. The sheer amount of practitioners many of us see, treatments we try, research we do and money we spend on trying to get better would make your head spin. We are some of the strongest people there are.

12) Often physical disabilities cause mental health issues like anxiety and depression, not the other way around. It is hard to wake up every day knowing we are not able to live the life we would choose, or even take care of basic household tasks. While there has been immense historical stigma, depression is not the root of chronic illness.

13) Not allowing space for the people with disabilities in your life to discuss their disability issues, while expecting them to listen to your problems. Relationships don’t work that way — they are about give and take. Healthy relationships are reciprocal — if not, they are exploitative and draining.

14) Ignoring the disability/pretending it doesn’t exist. This is an attempt to erase a person’s marginalization and challenges. It is also emotionally neglectful. This doesn’t mean discussing it every time you see someone but ask them how they are with things regularly.

15) Concluding the person with a disability is doing something wrong if other people have recovered and they haven’t. Recovery isn’t an option for many people. They may already feel embarrassed, ashamed or scared about this. This is otherwise known as victim-blaming.

16) Placing less value on people with disabilities than people who can work or do certain activities. We are valuable as is. Capitalist production does not translate into loveability. We have many types of creative gifts and often more compassion than the average Joelene.

17) Blaming a person or their lifestyle for “creating” their disability. This is more victim blaming. It doesn’t matter if you are a “spiritual master.” Don’t. It is not our fault.

18) Thinking the disability is “not that bad” or is non-existent because you can’t see it with your eyes. Invisible disabilities are extremely common. The fact that you cannot see them does not make them less debilitating.

19) Telling someone to “change their mindset” or to “not identify with their disability.” Doing so does not magically make our disability disappear and leaves us feeling shamed and unseen. For many of us, disability is part of our identity — it affects everything about our day. Yes, hope is helpful, but it does not negate the grief they might feel or the validity of their experience / condition.

20) Thinking a person with a disability is overreacting or being high maintenance for stating their needs. It is often really hard to ask for help or state our needs. If you shame someone for doing so, they may never open up to you again. Put yourself in their shoes.

21) Assuming that because someone is smiling / laughing / out that they must be better, or things are easy, or they are faking their disability. Smiling and laughing feel good. It does not mean we aren’t struggling. Most of us attempt to fake being well or try to ignore our symptoms. And many of us have some days that are much better than others.

22) Expecting that if a person with a disability is up for something one day, they should be up for it another day. See above.

23) Consistently making group plans that the disabled person is unable to participate in. You like hiking? We understand and may have loved it ourselves. But we need social contact too. Check in and see what types of activities work for a get together once in a while.

24) No longer inviting someone out because their disability has caused them to cancel a lot of plans previously. Trust me, we hate this way more than you do. Keep inviting us. Maybe visit us at home.

25) Believing ableism is less toxic and harmful than racism, sexism, classism etc. It’s not.

How to Avoid Ableism and Be an Ally to People With Disabilities | The Mighty

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Default Aug 28, 2021 at 10:10 AM
  #298
been in hospital for the past week or so- only got out wednesday afternoon

good to be back with you guys
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Default Aug 28, 2021 at 06:04 PM
  #299
In addition to the exhaustion and body aches now my digestive system joined the party. I still don't know if this is Covid or some other bug, but if I ever find out who gave it to me I'm gonna drive 'em into the ground head first like a tent stake.
I got a Covid test this afternoon. They said two business days to get results. I guess that means Tuesday.... *sigh*
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Default Aug 29, 2021 at 07:17 AM
  #300
lovely sunny day today

hoping to set up my new echo device. it's meant to arive this afternoon, if I will set it up.. well that's another thing. I hope to.
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