Wow, am I exhausted or what? Icant even quite describe the feeling other than a mix of a bunch of rocks sitting in my head and/or a vice grips ever so tightening mixed with a balloon being filled from the inside out. This on top of just plain tired and a little sore (though back to just the long acting pain med and 1 short acting immediate release opioid generally 1x a day for the lumbar surgery and side incisions). Ive been meaning to post the latest news since yesterday afternoon but wasnt feeling well at all most of yesterday and had other things to try and get done in those moments I was feeling mildly better. I never try to let MPS in general keep me from doing most of the things I feel keep my life semi-normal and I have been trying not to let the headaches for a long time do the very same to what extent is possible. The past month have been a little harder especially to the point I go to the store as little as possible (I LOVE grocery shopping especially) and have not worked as much on a project I am doing for the MPS Society and have taken a few more naps due to getting up so much at night from the spine-bladder issues but I guess on the flip side I have been busy with a slew of the upcoming and current projects for APF that I just do in those moments when I do have a little extra energy nv it's these little things I love and that keep me going! With my neices and nephews having been here that also took up quite a bit of time so needless I have a pile of projects to catch up on. (I like it though and look fwd to these things).
So anyways on friday my neurosurgeons secretary called and said she had been asked to schedule surgery and that she was working this out and would call me back in a little bit. They have scheduled this next surgery for next fri most likely in the very early morning again (my neurosurgeon said she does this due to having to be next door for kids surgeries and so she doesnt end up having to push me till late in the day as she doesnt want us to have to sit around and wait for her. - I thought that was really nice of her to think of us like this!) - Regarding scheduling this surgery by this point I dont think any of us expect that the swelling in and of itself is going to affect the shunt enough to cause it to work well enough (ie we hoped once swelling went down from tues's surgery that the shunt may flow better and more fluid get through thus relieving headaches) in letting Cerebrospinal fluid out and pressure down. This could always change but im not getting my hopes up and am being realistic at this point. I see her for fup appt on tues regardless for fup from last tuesdays surgery and to map out our plan and go over any questions I have. She had scheduled this appt for tues bc of my having ERT mon (now it will be especially good I didnt skip ERT to see her mon since I may end up missing the following week depending how long I am in the hospital) and the appt is at the end of her scheduled appts so she would have time to talk. I am unsure if she will still do a shunt tap to draw off CSF and relieve pressure for a few days since surgery will be fri - I will ask her though as it would be so lovely to feel good for those few days leading up to fri so I could get more done! I know I have probably not taken it as easy as I should have after this past tues's surgery but I just want to get things done in the time I do feel atleast a little better and even when ive felt bad at times have just wanted to get out and do something! I cant take being at my apt for more than a day and even that I go near stir crazy! Since the shunt tap would oly take about 15mins I am uncertain if she will do it - one reason I could see her not wanting to is due to the incision healing and if tender and she is very up on not causing addt'l unneccessary pain when possible.
While im disappointed to be doing yet another surgery I am very thankful this dr believes me, is well versed in hydrocephalus/it is one of her main interests and that she wants to help.I havent quite decided how I feel about the whole situation ie not about my dr or anything but more about these headaches in general and hydro in general. I think it does frustrate me how much of summer has been captured by these surgeries but I dont feel any animosity what so ever towards my dr - if anything I am grateful to her for sticking with me when no other dr would with this and I think it's more a little sad in a way about the little things im missing out on with family like the fairs and plans we had but at the same time I do also very much know that there is always another fair, another family plan (our vacation in Oct for instance and many other things we will do before then after this surgery) and another summer that will be less filled with surgeries and recoveries god-willing so I chose for now not to let it get me down other than a fleeting sadness here and there.
Like I said above ive always tried to find a sense of 'my normalcy' despite MPS and though it may seem abnormal to other people not living with something like a disorder as MPS I actually enjoy my life, enjoy the family and friends I have, enjoy the things I am a part of. I enjoy the time I get to spend with my neieces and nephews epecially - they are such beacons of sunshine, funniness, silliness and when im not around them but need a reminder of the little but great things i'll often do something as simple as watch one of the videos on my phone of any one of them. Their phone calls when im not with them also make me laugh, smile and giggle alittle bc im not sure how I got so lucky to have such cute, cute nephews and neices whom adore me and whom I adore very much!?!?!?!?! MPS may be a sucky disorder but it doesnt have to mean a aweful life. Balance and finding something you ttuly enjoy are key. Working with people (providers especially) you dont mind or whom you get along with well is also so important in a disorder like MPS!
Today I spent the morning and part of the afternoon with my mom and sister out and about in and out of the car all day on our feet and then went to my sisters where I spent the rest of the afternoon with my nephew and tonigh this same nephew is spending the night here so needless I am exhausted on top of these headaches which truly do feel like they kick my butt at times. Tomorrow will be a car show all day so while not as much on my feet it also is outddoors all day and alot of in-between on the go so once Zander is in bed tongiht I am going to try and go to bed myself early. Ive been getting up again 5-6 times a night so every bit of sleep in between is welcome. The rest of the week is equally busy with doing as much as I can get done while trying to balance these lovely (sarcasm) headaches. Monday is basically all day at ERT, tues i'll have to try and get some things done for other committments I have with APF before heading to Madison for the appt with my neurosurgeon at 3 to decide on what our plan wll be with this plan ie one of the other LP valves or move to a VP shunt. Weds is an separate non-surgery appt in Milw., thurs is free so far and friday is surgery again.
On a slightly funny note since I am at my apt and live alone ive had to improvise and figure out a way to cover and then re-cover the 2 incisions on side and lower back before and after showers each day - anyone who knows someone with MPS knows we dont have the most flexible bodies.. So after surgery both sites where covered in gauze and tegaderm (I get very itchy to long term tape) and so ive cont'd to do this same thing for showers. Tegaderm in and of itself when you can see where you putting it well is not always the easiest thing to apply - needless i'll admit I had a slight temper tantrum this morning bc I was so tired and in a hurry to get in and out of the shower and so irritated at the tegaderm which just wouldnt co-operate. I got the side incision covered for the shower and afterwards as well (why I didnt just leave it with only the original 1 top of tegaderm each day for the shower is beyond me instead of applying essentially 2 barriers to prevent water getting to the stitches and glue and thus much harder I dont know!) So I get to trying to cover the lumbar incision and messed up the first dressing before even getting close to my skin this again essentially while doing this blind/feeling only the top/bottom of the incisions since I cant hardly bend to the side to see well enough as im trying). 3 tries later I got the gauze on after applying it directly to the tegaderm thus freeing one hand and got the tegaderm on to albeit pretty crooked. All to start over again tomorrow.. Eeek I dont think id ever be hired as worlds most flexible or coordinated!
I will try to update after tuesdays appt with our plan.
Take care.
Erica
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