Weekly Check In March 25 - 31
It's the last week of March and spring is here for quite a few of us.
Are the weather patterns affecting you at all?
What's going well this week?
What's causing you some difficulties?
@aluminum1azalea @amarifey @BeyondTheInvisible @CaringBrit @DanaMH @Krispykitty12 @NoraMeow @Tyedyedbutterfly65 @VinylFly @JoyIntoDarkness @Eee333 @k87 @goldenSpruce1512
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@AffyAvo
I am practicing with crutches and a knee scooter this week prior to my ankle surgery on 4/1 and finding it extremely hard to do anything since starting Monday I can't but any weight on my foot for at least 6 weeks and I am feeling the limitations and feel for those that suffer long term with restrictions.
@DanaMH ouch i hear you hoe you recover fast Dana
@DanaMH Hopefully it will get easier with a bit of practice and you can get some help! I hope your recovery is straight forward.
Hello! It's getting to be spring for me too and I was able to go without a jacket for the first time this year, so that was exciting. Unfortunately, where I'm living, springtime means clouds and rain, which means migraines for me. Luckily they haven't been that bad so far, but I'm not sure how much longer my luck will hold out.
This week, I was able to go to the pool, which was super exciting, since I normally don't go because I'm pretty anxious around people. I just swam a few laps and then left, but hey, baby steps.
As for what's not going so well, I could write a book on that. I won't though because I'm trying really hard to have a good day today. In short, my assignments are piling up pretty quickly and it's only the second week back from Spring Break at my university and my roommate doesn't respect my migraine triggers. Other than those, I'm doing surprisingly okay.
@HobbitsandElves It always feels great to shed the jacket! Good for you for getting out to the pool.
Hopefully your migraines won't flare too badly and you can take some fun & relaxing breathers between getting assignments done.
I'm going tommorow to visit local nephrology hospital - they are going to test my kidneys if my disease is progressing and if yes I will need to take even more aggresive/heavy medications to stop it from progressing.
It's stressing me out.
@alienwaren That does sound stressful. I hope you can find some things to help you relax until you get the results. Hopefully good news will be coming!
@AffyAvo
I've got the results. We stopped the disease for now, but doctor is worried about the damage done to the kidney.
@alienwaren That's really great that it's not progressing. It sounds like the damage that is there has been there for a while? Hopefully they are functioning well enough where you aren't having serious problems due to what damage there is.
@AffyAvo
It's not that bad, I have raised Creatinine levels, which is a sign that some damage is already done. I'm still on very close observation by my doctor, because we are slowly putting away my drugs to treat the disease. I should not take those for longer than one year.
@alienwaren
Hi Alienwaren, I am glad that the disease progress is halted. I hope the creatinine level can go back to baseline after you stop the medications? Keep us updated. :)
@AffyAvo
I just got diagnosed with muscular dystrophy, a neurodegenerative disease.
My muscles will waste away, which sucks.
I'm trying to understand this diagnosis and trying to cope with the possible loss of my mobility.
@involuntaristua That's some pretty big news. I hope you have some great people supporting you as you navigate that.
@involuntaristua
Well my medicine I take is literally encouraging my body to 'eat' the muscles and convert them to fat
@alienwaren Do you have other medication options?
@involuntaristua
I am sorry to hear that. Muscle distrophy seems to be a rare disease. I must be hard for you to cope with it. How are you understanding the disease so far? Is there any physiotherapy or medication to ease the symptoms or slow down the disease progress?
My problem is between my female pain (fibriods) and anemia and then mental problems depression, anxiety, and PTSD and now anger issues. . . I cannot deal well with the public. However I have not been able to get a doctor to help me get on social security. In my entire life I have never kept a job over a year. my own family calls me the bear. . . they are on their toes as they have no idea when I will freak out.
I have been on meds before and they gave me nightmares and very dark thoughts.
I used to do phone calls and even now I avoid the phone. I just feel like people our out to get me if I don't keep up my walls and keep out my anger.
I have no idea how to get help.
@Rebekahwriter13 That sounds like a tough mix of issues where they will interact and make each other worse. Are you able to access therapy at all? How treatable is your anemia? I hope some can be managed quickly so you can work on dealing with the rest. Accessing to benefits certainly does help, it's frustrating how difficult that access can be!
@Rebekahwriter13
Hi Rebekah, have you tried any treatment options for the fibroids and anaemia? The pain could be a trigger and worsen your emotions. Perhaps reducing the challenges you have to face everyday one at a time could help. Try to make an obgyn appt?
I am sorry that you are facing a lot of problems at work due to your health issues. Have you tried any of the mindfulness activities on the site?
I had real bad reflux. Don't know why. Getting better. I have been mentally pretty sharp
@secretCucumber2425 Glad the reflux seems to be improving and mentally you're on things!
@AffyAvo Thanks! Doing even better today. 
@secretCucumber2425 Great!
Ugh I am wiped out. Did very little today. Took a nap on the couch and I woke up feeling pinned down. It happens often enough, but it's been a while since it's been to that level. It's just due to fatigue in my limbs, it makes it feel like I'm unable to move them and gives a sensation like I have weights holding them down.
@AffyAvo
Hi AffyAvo, we appreciate what you have done for the community. Its okay to have some rest days. I hope you're getting enough rest. Do share with us if you feel like talking about any problems. :)
Thanks! I'm feeling better today.
