So Home sweet home as I wrote last night - im at my apt which is nice. Sort of a low key day today. - I slept through night last night literally for the first time in I think atleast since may! - I did accidentally take an extra dose of the Detrol LA and the flomax so I wonder is that what did it since that helps control spine nerve damaged bladder issues or was it that I had only slept 4 hours tops the past 2 days and very little sleep any day before that? I am thinking a combination but more the meds bc ive had very little sleep for so long and there was the incisional discomfort (not really pain just discomfort with laying on my back or on the R side that I could only sleep on my L side and I literally woke up in the same position I fell asleep in???? I nomrally make such a mess of my bed bc I toss and turn so much for various reasons... I am still super tired today but was awesome not getting up 8-9-10 times last night for sure especially with the discofort of trying to fall back asleep! I am going to go back to my regular dose tonight and for a few days but if getting up constantly again like I emailed my 2 primary providers (MD and NP) in the core-group provider email if it goes back to getting up multiple times a night maybe i'll call my Urology drs nurse and talk to her about trying a higher dose. We'll see!
Ive been neglecting other areas of my care since may (didnt get the last 3 month series of botox in my thoracic, cervical and shoulders (about 33 injections), last year I had decided id wait about a year for healing on my right hand thenar tendon transfer surgery recovery because it takes so long - while that isnt noticeable to anyone else I can definitely notice a difference between the days after surgery, when the cast was removed at 8 weeks, to when the splint was removed 3 months later to now in both the finger where the tendon was taken from (better flexibility again and less stiffness) and the thumb I think is stronger. Anyways I think the L hand needs to be done and also have numbness there but just have been putting it off. I'll probably at the very least schedule an appt with my hand surgeon for the next month or two but not sure when i'd do the tendon transfer if he still thinks it's needed. I also have been putting off the visit to the Ortho-hip dr in Mn which my Ortho drs here in WI (FMLH) thought would be a good idea to get his opinion on the femoral head and neck thinning/cyst changes and the bony issues. I did today schedule a 2 - 2 1/2 month appt with my P-MD (the NP) which we are going to do every 2-3 months now so my care can be better managed and they are in the loop (every 3 months I will see the NP and the other 2-3 months I will see my actual internal med dr since both are very involved in my care - I really think thats will be a nice set-up.) They will be able to help me manage getting tests like the MRIs that genzyme recommends every 1=2 years and other things in order.
The beginning of Oct my family is taking a vacation to the Mississipi with my parents, sister and her husband + niece and nephew and my 2nd oldest brother, sister in law and niece for 4 days. I think we are all really excited to do this together and will be nice to get away given all the craziness this summer really has been!
I also have a slew of APF activities coming up including interviewing a potential new APFAN leader to join what we do in advocacy and to work together with. Up to this point the other WI leader and I have done nothing together essentially and she isnt real involved so it would be great to have new blood to our team! Some of the activities and events coming up here in WI mostly for Sept Pain Awareness month include: cont'd planning for the joint APF/UW-AFCH Pediatric meeting at UW Hospital, an APF PAM display outside of the cafeteria at UW Hospital the 1st full week of Oct tues-fri, (we also did this display last year although I did the behind the scenes work and then ended up having the tendon transfer surgery moved up so others took over for me). This display includes materials on what w do at APF, becming a member or wht our leaders do. Materials for providers and patients alike on various pain topics (we have quite a large variety of well put together journals, hand-outs, materials, etc. along with our business cards.
-Towards the end of Sept there is a Walk/Run being held in Greenfield with Advanced Pain Management 0 a WI wide pain group I have worked with for about a year now and all proceeds from this will be benefitting APF. We also will be having a disply table with our materials.
-We have our Sept Pain Proclammation for WI signed by Gov Walker back in June designating Sept as PAM.
-The 3rd week of Oct those of us leaders in the central and eastern regions will be having a training conference in Albany, NY jointly with the medcal center there of which I blanking of hand (a very well respected university).
The Incision pain really hasnt been very bad - I do have to cover the lumbar and flank incision for the next 5 days till I see Dr.Bragg on tues. The side incision where valve and reservoir sit are closed with glue and the back incision has stitches which I think will dissolve on there own. If anything pain wise the most of it isnt at either inision site but in between the incisions more on my back/side in between the two points as this is like a sort of stabbing feeling which is quite unusual to say the least! The headaches are the same no change - there is swelling yet so I dont know maybe the headaches could still go away it's hard to say really. I talked to my neurosurgeons nurse this morning and I must just be a dead give away voice wise because she just said something along the lines of your not feeling good are huh? I will probably check with my nrsgns secretary tomorrow to see if she has put in a tentative surgery date then which day would it be so I could let my parents know. Thankfully their work is so accomodating to my medical issues and would let them off at the drop of a dime if need be. One of the other symptoms ive noticed lately with the headaches is my vision I have a hard time reading things like the screen without my glasses on but the small weight of the glasses just adds to the feeling of the pressure. Nuts! I do also think the vision issue ties into how tired I am but since I rarely sleep good I can quite fix that part and refuse to take some kind of sleep aid other than drinking things like tea w/out caffeine.
Side incision - reservoir and H/V valve