tried sun-block/ appointment sle rheumy/ broke thumb between spanners wheel-chair

[Guest guest]

hi,

i used a sun-block, about three weeks ago. i sat in the sun for 1 1/2 hour.

it helps me to prevent new rashes or the old ones to flare, yet not with the rest of my body. at first, i hoped it would been a cold.

but then my body seems to burn from the inside. it's just if the sun is caught in my body. my glands are pretty swollen, feverish, visual problems, abdominal pains, upper back muscle spasms, stiff neck, ofcourse all kinds of pains all over, numbness, tingling etc., etc. a boring list.

increasingly, i loose wait that even my buddy notice this. she's a great help to me. she comes every week to see me for a couple of hours and to help me with chores. anyway, i don't regret i tried the sun-block.

i mean, it could had helped. now, i know, it just partly works for me.

the weather was horrible last week, 90 degrees outside. this apartment-building has a flat roof and the heat stays indoors, even now after thunder-storms. this doesn't help much with

feeling not too well.

four weeks ago, i broke my thumb between the spanners of the borrowed wheel-chair, from a home-service in equipment.

it's a wheel-chair meant to use it yourself with the big wheels.

through the brain-fog it took me ten days to connect that my thumb hurt because my thumb got between these spanners. also i didn't give it much thoughts. i thought just such a pain.

it was that i just couldn't bend the below part of my thumb.

then it took me some more days that my brains connect: oh, yeah, phone doctor.

i talked to the assistant who guided me through some tests to examine the thumb. the assistant thinks i have broken it and it can't be taped, or whatever. it's too late.

i was asked why i didn't phone sooner. so i told the assistant that fibromyalgia, while i was at it, lupus too, that one symptom can be brain-fog. so i explained in short what this is and that i have this badly.

it's like i talked to a broken record. he repeated himself that i needed to phone sooner, and he needed to go back to work!

right! i wish he would do his work.

a day later, i had physically rehab again and talked to the occupational therapist. she explained to me these wheel-chairs the home-service lent to people are not suitable when you don't have a healthy upper-body.

in the same rehab institute i have physiotherapy. i practiced

in my wheel-chair with the physiotherapist. she said nothing about these wheel-chairs not suitable for me, either did my family-doctor.

i talked to a former coworker who's advocating for people with physical handicaps. he informed me about wheel-chairs and that you need wheel-protectors, to avoid your thumb get stuck between the spanners.

anyways, the occupational therapist advised me to go after the mobile scooter. i stopped this, for i wasn't ready then in February. also i was advised to ask for a wheel-chair, yet one in which i can be pushed, for example when i visit a museum or go to beach. this is the last thing i want, to be pushed. i want to maintain my independence as much as possible. the local governmental organization, who approves such requests will not approve a mobile scooter and a wheel-chair at the same time.

the person i need to speak to, is on vacation. when she returns, i will for a mobile scooter.

the rehab ended last Wednesday.

i took a lot of my energy, so i hope i will save some now for example to write often, yet i still need to go after so many things for my health issues. will this bureaucracy ever stop, i wonder.

i made an appointment with a rheumatologist specialized in sle.

it's in an academically university hospital here in Amsterdam.

these specialists are advised to me by the Dutch Lupus Association.

most specialists have a waiting-list of three months, so therefor i made this appointment, although i want a few months to myself first.

to my surprise i could have had an appointment as soon as the end of august. i kept to my own idea.

emotionally there's so much is going on. also i'm warned by lupies in The Netherlands, not to expect too much. so, i want to prepare myself.

the appointment is in October. i even was surprised that they gave this appointment and i didn't need to explain myself.

i'm mind controlled by my family-docter on that matter.

i'm thinking of you all. i still have about 200 emails to read.

lately, i need two hands to click the mouse-button, but i will catch up.

sending love and wishes of recovery from health issues, also wishes for the safety of all people dealing with these hurricanes.

love to all,

micha.