Friday, May 9, 2014

Various Appts, not much else.

This week has brought a few more appts (imagine that, right!?) with normal Pain Mngmt f/up (required by federal or state prescribing laws for opioid med prescriptions) and 3 mo f/up with Physical Med Rehab dr (Caldera) for botox injections which are done in the neck, across shoulders and upper spine + some of thoracic (mid-spine) region to calm muscle spasticity. PT as well but that is close to home, the same city as my parents live and not to far from where I live.

Pain Mngmt wasn't really anything new, if anything we talked more about what's going on with other aspects of my care (how the shunts have been, cardiac issues especially) and she asked about what I've been working on/if I am working on anything big for GS or other things I am involved in. (Sun School ends in 2 wks, 3 of us Teachers have been meeting to put together and finish our final group project activity as well as the craft (making kites for all the kids, 'soaring with God') for all grade level kids.) Anyways she is involved with one of the Pain Academies and always talks about different things she/they are working on around Pain prescribing/awareness and bringing attention to Chronic pain issues (specifically in recent years how pain mngmt has been vilified).
Someone she is working with is apparently interested in working with patients at some point down the road and so she I guess wanted to give a heads up. I obviously have plenty to do either way but if need be would help where needed if I could to help as lack of awareness around what medications can do for chronic pain pts is a huge issue.

Dr.Caldera, my PMR doc is pregnant which I knew last time, (her 4th kid) so will be out come July for 3 months (i'll see one of her partners, a dr actually who worked w/my Neurosurgeon after my 2nd shunt was placed for the next set of injections) but talked about a group she has been wanting to start for some time and is hoping to get off the ground in Fall once she is back. This would be focused for her Adult pts who have Congenital disorders so this includes disorders like MPS (something your born with), CP, SB, and other congenital disorders that affect the muscles and which pts age out of Pediatric services.
Some pts like myself do still have some Pediatric specialists who also treat adult pts and some Specialists who are duelly trained in Adult and Pediatric specialties (so joint Internal Med. and Pediatric Residencies or like Neurosurgery where they do a fellowship after training is complete in Peds Neurosurg. But other pts due probably to the type of specialists they see do not access to Pediatric Specialists once they age out (I guess).
In any case the idea she had was patients would be able to exchange information, specialists, resources and just generally stories + help each other which seems like a good idea. =)

Headaches have been somewhat ok, last weeks adjustment helped a little more, and really a little more is better than nothing more. Do I wish it was as good as some of the times or for instance like w the external drains? ABSOLUTELY! But I guess this is better than nothing? I'll take what I can get at the moment and only hope something improves or at the very least nights and mornings get better.. I can hope!
I am supposed to schedule a f/up with Dr.Bragg so will do that in a couple wks if I con't to feel at minimum this 'ok'. Ugh, I am tired of asking her for help, tired of the stupid shunts and tired, tired, tired of the headaches and thus related symptoms so I just hope things will stay the way they are and I don't have to call/see her sooner!?!? - It's not that I don't like her (I do) just that I don't know that she knows how to help right now and I feel at a loss b/c I know these headaches suck and I know it's the exact same symptoms at a different degree than other times (always been variable at different times) and I honestly just feel whiny, not that she makes me feel this way but seriously how do you just keep asking for help, over and over and over again for the same issue?

Last but not least (sorry if these updates are kind of boring, I am not much for regaling people with stories, I basically only blog for the purpose of updating about the goings on w/the medical stuff) the new cardiac med, Digoxin atleast doesn't seem to have side effects and though it hasn't slowed heart rate down (the real goal) it seems from what I've read it can take a few wks for it really to kick in fully?
I have to re-test INR again Monday while at ERT and give Cardiology a heads up when my Infusion Nurse takes the lab over so when the NP/Nurse calls I guess will let them know if HR is still as high as it seems to be now. It is definitely annoying (feels a little like a constant butterfly fluttering in your chest!?! SOB is a slight bit better but that to, it's not like it's really noticeable to anyone else b/c it's not as if it is the 'SOB with activity' but instead is just the random and worse at night SOB that makes it hard to get enough air or deep enough breath I guess-hard to explain that one. Same as was before the AVR.

On an un-related to med. stuff note, for Sun School and Mother's Day this wknd I bought some wooden bird houses and bird seed + am having the girls paint and/or decorate these houses + write a little note to their Mom's and we'll attach to the bird house (there's a rope at the top) a little saying 'Spreading the seeds of God's word'.
Hopefully the girls like the idea, seems a little different than the more average/more often flowers or having them make a card and has an applicable Christian theme... Our story also happens to be 'The workers in the Vineyard', so while not directly related it does go along with one of Jesus other parables. I really try to find crafts that have wider, real life application as a reminder that God's hand is in life all around us. I always hope this is effective, who knows?
Thanks for stopping by,

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