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Stay hydrated and keep your blood sugar up

Even if Xandra is just playing on her iPad she makes sure to start hydrated and to keep her blood sugar at a healthy level.

When she is already in pain, the last thing she needs is to end up being dehydrated or having a low blood sugar crash.

That's one of the reasons she always packs a bag with food and water, to take with her wherever she goes. That way she doesn't have to hope there is gluten and dairy free food when she needs it.

#ChronicIllness #ChronicPain #chroniclife #Barbie #Representationmatters #Representation


Just tired.

I’ve been to the urgent care two days in a row for two different things. I had my head in the toilet all night last night and finally stopped getting sick before my mom got off work. She works 3rd shift and my boyfriend was hours away with work. I’ve only ate oatmeal and a parfait in 24 hours and I’ve lost 10 lbs the last few days. I’m just >tired< of being sick and >tired< of being scared to take medicine. It seems like every time I take antibiotics my body reacts weirdly and I end up sick all night or get dizzy and pass out. I haven’t taken my medicine today bc I don’t want to feel worse... but the medicine is supposed to help. My doctor added nausea medicine to the list today. So for the next 7 days, I need to take an extra 4 pills a day to feel better.
I’m not against medicine. I take preventative migraine medication daily along w my allergy and depression medications- but when I add things to these medications (that are safe with my regular meds) I have awful adverse reactions. The smallest infection messes me up for days, sometimes weeks, and I hate missing work. I’ve been sick for over a week, I’m scared to eat, and I’m just tired.
#CheckInWithMe #Depression #Bipolar #Migraine #sinusitis #chroniclife #Medication

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Good days

It's not easy being a singer/song writer on days when she can't even sit at the piano. But Xandra is working on 3 new songs in spite of not getting piano time.

One good day this week she put on a gig outfit and practiced with her stage mic for 20 minutes. She had a pain flare afterwards. But it was worth it.

#ChronicPain #chroniclife #ChronicIllness #painflare


You might want to see a Pharmacist for help with your care

I saw a pain specialist PharmD today and I'm really glad I did. This was a suggestion by my PCP and I'd never even heard of this option, the role is a new one in many regions.

I saw my MD pain specialist the day before. She'd never heard of pharmacists working with patients clinically but was ok with it. I take meds for a lot of non-pain related issues, and despite the fact that my PCP is really good at looking at the big picture, it was nice to meet with someone looking at it from a different perspective.

Apparently this speciality is much more common in other areas. Her background is working in VA hospitals helping Veterans get pain management.

She agreed with the pain specialists suggested next step, but she gave me some good insight as to why my dose is so high and how the medication works compared to similar medications.

We talked about Celebrex being an option someday because it is less likely to upset the stomach than other NSAIDs. I didn't even know it was an NSAID.

I don't feel any better about the predictability of my pain, but I do feel like I'm in good hands for pain management between her and my specialist. And I think when I'm ready to titrate off of medications she'll be really helpful.

In addition, she and a hospitalist I know have both said they'll help me write an article for The Mighty. Both jobs are important for comprehensive care and not well known.

All in all, it was an hour well spent.
#painmangement #PainMedication #pharmacist #ChronicPain #ChronicIllness #chroniclife #Hospitalist

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Chronically Ill Barbie #ChronicPain #chroniclife #represent

I'm using a weird coping mechanism. I never played with my Barbies as a kid but due to a cool musician playset I ended up buying one.

Then I suffered a huge pain setback and somehow personalizing the doll and posing her has been helping me cope.

I'm planning on doing little dioramas of the doll and some others, depictions of being chronically ill and still living life. If you know an adult or child this might entertain, I have an insta called barbieposer.


When other people's stories about you depress you

I keep having well people tell me how hard my life is, and how sad that is, and I'm sick of it.

I think my life is pretty good and normally I'm able to take things in stride. But I have a lot of people in my life that try to empathize with me even when I'm not sad. They feel the need to talk to me about their sadness that I'm living a painful life. It's exhausting to try to convince them that I'm not sad, that I'm coping.

And then sometimes it hits a nerve. They will mention something that does make me sad, something I miss, something that's hard. And then after l reassure them I have to reassure myself.

I'm exhausted. I need a break from people projecting their fears onto me. #ChronicPain #chroniclife #Pain #ChronicIllness #Endometriosis #Fibromyalgia


It's just for TODAY #chroniclife #ChronicIllness

It's just for today. Some wise woman told me this. For people like you and me, it's the last thing we want to hear, but when you break it down, it makes sense. Tomoro is a new day. Each breath is a miracle.
#chroniclife #ChronicIllness #everydayisastruggle #afight #wegotthis


Lyft needs to let you select car types

I've been getting mostly SUVs and Trucks as Lyft matches recently. I can get into them, many can't. Lyft needs to let us select types of cars.

From my Twitter account today:

@annalisatcmh: Dear @AskLyft
I'm using your service because of medical needs, I take Lyfts daily.

Most of my recent matches have been either Trucks or SUVs.

How do I avoid getting a tall vehicle match if I am having a day where it's hard to get into one?

#ChronicPain #chroniclife #Fibromyalgia #Endometriosis

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