spoonie

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What clothing brands are most comfortable for your chronic pain?

<p>What clothing brands are most comfortable for your chronic pain?</p>
19 people are talking about this
Community Voices

So much stuff!!!

I have been having a really hard time and it’s been a reallly long year for my family.
About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

When I was younger my brother more than once sexually assaulted me.
I don’t know if it actually considered that
I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

So the situation is idkw but after he had his stroke I just couldn’t speak to him.
I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
He has been trying to get in contact with me but I have thwarted contact.

My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

#SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD

8 people are talking about this
Community Voices

No medication

I need advice. Or just some positive thoughts. I’m at a breaking point and don’t know what to do.

I’ve been taking Pregabalin for my #Fibromyalgia . I was on 2 pills a day but at my last appointment with my rheumatologist, she suggested going down to one to help with how tired I was (also taking Amitriptyline). So I went down to one for about 3 weeks and I wasn’t feeling great and felt I needed the second dose. I messaged her on MyChart and she approved going back onto two pills a day.

Well….when I refilled it last, I didn’t realize this until this past Sunday, but the instructions still say 1 pill once a day. Therefore, I took a 2 month supply in 1 month, leaving me completely out and empty. I’m on day 4 of no medication. Sunday night, I sent in the refill. Monday, I called the pharmacy and really realized why my prescription couldn’t get filled. But I still had mondays pills. I called my doctor monday. Left a message. Tuesday I was completely out. Called again. Decided to speak with the operator and she transferred me to the same line I left a message on the day prior. Left another message. Wednesday I was so over it so I didn’t attempt it. Yesterday, I really started getting upset. I called my rheumatologist again. Tried to speak to a nurse. Phone rang and rang and rang. Called again. Left ANOTHER message. I sent her a message on MyChart yesterday, which the staff viewed 2 hours after I sent it. I called my pharmacy and asked them to reach out. THEY left a message. I contacted my primary. She’s out until Monday and he nurse suggested I call the rheumatologist’s nurse. I called the nurses line again today and someone answered. Told her what the deal was, I’ve been out and today was the first time I’ve actually spoken to anyone. She was going to send her a message and get back to me. This was probably 6 hours ago? I thought maybe she was on vacation, but no one said anything and there should be plans in place for docs who go on vacation. So here I am, 4 days without the only relief I’ve had since being diagnosed. I’m upset. I’m frustrated. I’m at a point where I just want to cry. I JUST need the instructions changed so I can refill it. I feel miserable. I’m back to barely being able to walk, my arms can barely hold my phone….I’m exhausted.

#Spoonie #chronicillnesproblems #help

5 people are talking about this
Community Voices

Have you ever met anyone who lives with the same rare disease as you? What was it like?

<p>Have you ever met anyone who lives with the same <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a> as you? What was it like?</p>
6 people are talking about this
Community Voices
Beth

Tortoise Thoughts

<p>Tortoise Thoughts</p>
6 people are talking about this
Community Voices
Beth

Little Bit of Progress.

<p>Little Bit of Progress.</p>
27 people are talking about this
Community Voices

What helps you stay grounded and motivated at work?

<p>What helps you stay grounded and motivated at work?</p>
6 people are talking about this
Community Voices

How do you show appreciation for the health care providers in your life?

<p>How do you show appreciation for the health care providers in your life?</p>
4 people are talking about this
Community Voices

My new hobby

<p>My new hobby</p>
20 people are talking about this