Because we are moms

I sit here in the middle of the night, in pain, and anxious about the day that’s ahead. We are going to a museum! But what does that mean for me? Someone with #rheumatoidarthritis #chronicmigraine #chronicpain #pelviccongestionsyndrome ? I can’t do much walking without aid, especially for long periods of time, I push through at work and then I am so exhausted at the end of the day it’s hard to accomplish anything else other than my job. This is hard for me, I always want to be doing something and have so many great ideas, BUT, my body fails me, daily. It is so very frustrating! I want to be a fun, active mom, not a chronically ill mom, it is depressing and gives me great anxiety, I never know when my body will give out and I won’t be able to function, take care of things that need done, myself and my kids. I push through all the time, but there is a point when my body just doesn’t allow me to push through. It is physically unable to do so, and I feel that coming on. Its terrifying to say the least. I’m only 26. 26! People tell me I’m too young to have such bad health or chronic illnesses, uhm… its not like these health issues have a interview panel where they seek out the right candidate to cling to and sick the life out of them. No, they just happen, and there is nothing we can do to stop it. We have to survive. Live. Keep going. Try our hardest every single day. Why? Because we are daughters, sisters, friends, wives, mothers, we are a community of people who have to struggle to just exist, we weren’t given a choice we are just dealt a bad hand. We MUST do our damndest to keep going, no matter what or how many illnesses we have to face. Why? Because there are others out there just like us who need us, a community to help hold them up when their bodies are too weak to do so, we have to be there for them, and for our families, our children are watching. Watching us persevere, push on, going and going with determination that is so strong we are able to stand up even at our weakest and be there for them. Because we are moms. Because we can’t give up, they are watching us and we do it for them. We love them with all our being and we want to be there for them through all of their own trials. We may be broken. We may be bent. We may have to use mobility aids, have a fleet of doctors and specialists and other spoonies behind us, but we keep going. Every minute. Every new diagnosis. Every new doctor. Every new specialist. Every new procedure. Every new medication. Every blood draw. Every injection. Every supplement. Every homeopathic medication. Every new hope. Every loss. Every sleepless night. Every. Single. Moment. We keep going because we are moms.

#anxiety #thisismylife #depression #anxiety #rheumatoidarthritis #spoonie #autoimmunedisease #panicdisorder #mommyneedsmorespoons

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I’m setting here soaking

Don’t read this post if your ify about tmi. You’ve been warned.

So, I’m setting here soaking in a warm borderline hot bath in the Hope’s that itll aid my swollen and painful joints and make it easier for me to move especially since someone *cough* NOT me decided I needed to work 6 am to 2 pm the next two days. Guys, I am not a morning person. Add to that chronicpain, chronic migraines, constant fatigue and brain fog, and rheumatoid arthritis to boot, I have a really hard time getting around in the morning due to stiff joints and my body not being acclimated to the pain I wake up in. I need a while to get going in the mornings and the earlier it is the longer it take me, because even before all this I was not a morning person l. I’ve worked 40 hours in 4 days. Today I’m off work, yay me. BUT, my kids have missed me and have been up and wanted mommy time today so I’ve not really dont much but I’ve also not rested or slept today. I don’t feel any better now than I did when I woke up this morning, worse in fact, and my toddler just couldn’t sleep last night so I was up with him every half hour or hour, I’m not 100% sure on the times because I was so exhausted I could hardly stay awake. I let him lay on my lap ( on my 2 incisions from my laparoscopy surgery a week ago ) and watch the same 5 pj masks episodes Elon repeat all night long. I’ve hardly been able to move today I’m so so stiff and sore and idk how I’m going to work tomorrow. Honestly. Because I can try to push through when I have a while to wake up and get acclimated to the pain but up and going by 515/530 is not going to give me any time to rest tonight much less be up to be fully awake before work. And makeup? Ha. Ha. No. I don’t have the spoons for it. I’ve made a huge effort this past week to wear makeup because 1 I needed a self esteem pick me up, 2 to hide the horrible pain I’ve been dealing with this week. But I can already tell that tomorrow I will not in fact have the extra spoons to put on makeup to hide my fatigue and pain. And I’m anxious because I don’t like when others can see how bad I’m feeling in my face. But what’s worse? When you have no spoons for makeup, or any self care, and no one seems to notice how bad you are / are feeling. It’s like, invisible. Well duh I have several invisible illnesses, but ya know. It never feels good for others you see daily to just be able to so effortlessly look over your pain. It hurts on a deep level, like, no one cares. But it’s not that you want others to understand your pain because then they would have experienced it as well but still you feel the need to be acknowledged accepted and not invisible. So, I’ve been in the bath for over an hour, maybe 2, but I’ve done no self care just soaked here in pain.

I’m not sure how I’ll make it through tomorrow but so far I’ve made it through, to my own surprise, all my past bad days so I’m sure ill function through this ones as well…

#ehlorsdanlos #chronicmigraine #chronicpain #thisismylife #depression #anxiety #rheumatoidarthritis #spoonie #autoimmunedisease #panicdisorder #mommyneedsmorespoons

I want the pain to stop but how??

Please, please find a way to ease this pain! I’m in constant pain, day, night, every hour, every minute of everyday! #chronicpain and #chronicmigraine are no joke! So please, scientist, pharmacists, anyone or everyone, find a cure for chronic pain! So many suffer, and with no real answer or fix or something to even alleviate the constant pain many of us suffer a low quality of life due to the fact, 1 we’re in pain duh! 2 we have to miss work, family gatherings, vacations, school activities and many other things due to the pain, the fatigue from the pain, the host of other symptoms that can come along with being in pain 24/7 to were your brain is so tired it can’t rest properly, and if one is *lucky* enough to have something that helps with the pain there is a very large chance that thing also comes along with a host of symptoms and side effects all of it’s own. So before you belittle someone who suffers from chronic pain whether it be migraines, arthritis, autoimmune diseases, old injuries, or anything PLEASE FOR THE SAKE OF ALL OF THE #SPOONIES don’t judge! #bekind #becompassionate #care #listen #help #love #thisismylife and many others’ lives, please be understanding. AND. Yes there us an “and”, try to help find a cure or treatment and you know what? Something that would blow me away and probably bring me to tears from a nice gesture? Read up on my health issue(s) and show that you care and take the time to listen and really be there for me!

Thank you in advance for doing these things or even just one of them. You could change a #spoonies whole day!

#ehlorsdanlos #chronicmigraine #chronicpain #thisismylife #depression #anxiety #rheumatoidarthritis #spoonie #autoimmunedisease #panicdisorder #mommyneedsmorespoons

Odd symptoms

I have some odd symptoms that I can’t link to any of my current diagnoses.

○ When I have to scratch my skin, ie my upper arm or back, and even if it’s only barely scratching it and I accidentally press too hard I get a deep tissue type hurt/pain, like being frogged. And it continues to hurt for awhile.

○ Super dry hands especially cuticles

○ Brittle Nails. My nails used to be super strong and long. Now I can’t get then to grow long because they break off, they peal, they are so flimsy

○ Dry Dry calluses on my feet

○ Wax in my ears. Yes I know everyone has / accumulates wax BUT I used to hardly ever have any, now? So Much, All The Time!

Any ideas? I’d love to hear your feedback, thoughts and your odd symptoms!

#chronicpain #chronicmigraine #thisismylife #depression #anxiety #rheumatoidarthritis #spoonie #autoimmunedisease #thisismylife #panicdisorder #mooddisorder #mommyneedsmorespoons

My first surgery jitters.

So, I’m having my first surgery in September, I’ll be put under for the first time. I’m both oddly excited, and nervous. Excited because we are finally going in a direction to help find a diagnosis to a part of my health issues. I’m excited this may mean a name to my pain and also possible treatment options! Prayers would be greatly appreciated. I’ll keep ya’ll posted on the pre OP appointment and the surgery. Thanks for you thoughts and comments they mean so much to me.

#mommyneedsmorespoons

Million dollar question

I am sick. Again. But being a spoonie, someone with a ( or multiple ) chronic illness makes this more difficult. Not only do I have the lovely pleasures of being sick chronically, but then the normal bugs that everyone gets as well. And let me tell you, they are much worse for us #spoonies. You see, we already deal with a host of symptoms from our “normal” sick aka health issues. Add to that strep, the flu, the common cold, allergies, and all the fun sick things like vomiting and diarrhea. They are so much worse on us because our bodies are already fighting to just survive one moment to the next and a simple stomach bug can put us down for weeks even months if we aren’t diligent in our care and resting when our body desperately needs it. Today I am sick. But, the million dollar question? Yeah, that question is am I sick with a stomach bug? The flu? Virus? Or just a bad #flare ? You see it’s hard to figure this out because you just don’t know, you already deal with so many symptoms and adding more I’d a guessing game. And, oh yeah it gets better! If you have MORE THAN ONE CHRONIC ILLNESSES??? You see many chronic illnesses have many other comorbid diseases conditions illness disorders that can be causing underlying problems, they could have triggered you “main” illness, or that one triggered more or they all began about the same time. We live in so much uncertainty and not even our specialists know all the answers. So next time you see or talk to a spoonie and they say they caught a bug or the flu, ask them what you can do for them or if they just need to talk, it will help them feel validated, we struggle with many mental challenges from our physical symptoms. Anxiety from never knowing when or where a flare will hit, what if we are gone from home and don’t have a way home or something we need like one of the several medications you have to take to just somewhat keep your health in check. Depression from not being able to do what many others can do especially those your own age. Lack of self esteem due to you not being able to work like the average person or keep your hair done or makeup on or you wear the same 4 outfits because they are the most comfy and it’s more important to be comfy when your in a bad flare up. Just be kind. Be thoughtful. Listen. Include us. Even when we often aren’t able to make it, we still need and want to be invited and thought of!

At work

While I am on my break ( 15 minutes ) I decided I wanted like “real” food vs like donuts, so I am eating chocolate milk and chicken crispitos, if you don’t know what they are they them!!! Yummm! But…. I’m not supposed to eat greasy food as it makes me super sick, and so do my new medications doe my #rheumatoidarthritis so yeah I feel like I’m gunna be sick while at work, and having to cook for the next 5 hours. So I’m hoping to have a good day, but we had a storm last night so my #rheumatoidarthritis and #chronicmigraine is in a flare….