Some is usual stuff (which is incredibly sad to even consider that!), like headaches albeit they just keep getting worse, so mornings really suck and every morning I have to admit I wake up and I wonder is this every going to be better again? Am I ever going to find a Neurosurgeon who will believe me and help me again? It is truly depressing (again I am not depressed the whole issue is just depressing, that does not mean I am depressed. I'm not).
Some nights in the middle of the night when I wake up and get up to take a med for nausea or something else to try and fall back asleep I wonder what have I done that I have to feel this bad? That I can't find a dr again who will believe me (I otherwise have a really great team of Providers, I am grateful for my PCP and all she does and the rest of my Providers minus Neurosurgery are great).
It is depressing. I know it's not me but that doesn't mean it's not hard day after day after day and honestly the fact that vast majority of people who see me have no clue. I am glad I can hide it but sometimes I guess maybe it would just be nice to have someone who could see that underneath the smile and the sometimes crabby mood and the tiredness it's not actually about me being crabby or in a bad mood or about me not wanting to talk to you or whatever people might think (I over think these things) but it is about it takes to much energy to that I don't always have.Catch me later in the afternoon and it's a different story. It's like a shade is pulled up, my head clears, the pressure goes away and I feel a lot better. I am not always a lot less tired but I can function a lot better b/c my head isn't in as much pressure...
Add to this now for the past month or maybe it's even been a couple months now, I can't even remember anymore it all blends together after awhile but the breathing/fluid stuff had/has picked up and is an issue again. Thankfully my Primary dr is really great and often without making me come in she helps manage these things and figure out what might be going on.
In the case of this swelling/breathing I did end up going in to see her and she in turn called and talked to my Cardiologist (Heart dr) but before even talking to him (she was persistent took her a week or so to get ahold of him albeit he is a great dr and we both really like him) she had re-upped my 1 water pill dose (gets fluid off from heart/lungs) and was considering a few things.
She also reached out to my study dr for the Humira as that can cause heart failure issues (we knew this going in to the study but my team felt the risk was small and potential benefits pretty good for my case. The Humira really has been good for my spine-nerve issues to calm this.
Needless being completely honest (and very negative but seriously I think I'm a little bit allowed albeit I say that kind of smiling and shrugging) it has SUCKED being back on this high dose Lasix and then I am also still on the other water pill, a longer acting 1 2x a day that gets fluid off over a longer period. This means managing how much I drink, somedays I do better than others and I don't have a set amount I can drink but I try to not over do it. It also messes with some mineral levels though I do already take potassium and magnesium which are 2 it can affect.
For now my Team is letting me stay on the humira and I see my Cardiologist in a couple weeks right before I have the 4th carpal tunnel release on my R hand so guess will see then.
I get some swelling yet as the day goes on in my ankles but stomach has been a lot better. The truly ironic part is overall my actual body weight is down by around 7pds before and since starting back on this higher dose. So I was retaining fluid but also losing weight (I'm very sure some of that is shunt related, I often only eat 1 meal a day).
So I guess I just pray and keep praying somehow I could find a new Neurosurgeon who'd be willing to take on my case and to really think outside the box as that's what Dr.Bragg did and it's the only way my shunts can be successful. God has a plan, right? I just need his help waiting.
4th Hand Surgery - moved up to Sept 10th
In the meantime the 4th hand surgery on R hand was moved up to Sept 10th (not sure why they moved it up but not complaining as that hand is something so painful. I should do better and just wear the splint. I think I may this week while traveling but I will be happy when it's just done and over again!
For that surgery everything is set minus seeing my Cardiologist the day before (just to be sure per my PCP to make sure Dr.Earing doesn't have any concerns but anesthesia is already being done under MAC so monitored and least amount of fluids will be used and is least harsh surgery approach on cardiac system.
We are waiting on cortisol stress dose recommendations from my Endocrine dr but if for some reasons those didn't come (would be very unusual) my PCP said she plans to use what she received from this same dr for the last hand surgery about 4yrs ago. I LOVE that my PCP is that organized!
Lastly I am traveling to San Diego later this wk, I get botox injections tmrw with Dr.Caldera at UW then ERT (Infusion) at Dean on Tues and fly out of Madison on Weds to SD for the Conf.
I have a slew of mtngs with various pharma/biotech peoples throughout the conference then have a talk I am giving on Thurs night (Transition to adult care) + other stuff i'll have going on and the talks i'll listen to off course. This is our National MPS Conf but this year is actually an International Conf so will be families, Drs and researchers from many countries there. Should be good!
