I cant help but feel like an imposter to this disorder- yes ive had dozens of surgeries, dozens more procedures, and definitely do feel everyday like I expect someone with a chronic disorder probably feels. Instead I feel like an imposter because I generally look healthy, I generally dont look alot like I have MPS (whatever that look is supposed to be?) and I generally try to lead a fairly normal (albeit fairly un-normal) life. I just feel like this, well to be honest Im not sure why I feel like this? But I still do sometimes... I think it is why I really appreciate people who dont assume how I feel just based off how I look and instead really know me and try to not assume anything.
Today's pre-op appt went well ; she made the comment afterwards something to the effect of how I am actually a really healthy patient with alot of underlying chronic illness. I have to agree; sure there is alot of cardiac stuff, CNS/shunt/spine issues. autonomic-endocrine and joint, etc issues but as far as taking care of myself I am very independent and at a good weight and know what to do to prevent getting sick alot. (supplements like copper/zinc and fish oil). I think it's always kind of nice to hear when your doctors think your doing a good job managing what is essentially a really stressful job (phone calls to insur., paperwork, appt scheduling, appt rescheduling, more rescheduling and trying to make things work together (have already cancelled and rescheduled 3 appts since mon afternoon and scheduled 2 others). Making sure you have the meds refilled on time, making sure prior auths for those said meds are filled out by the prescribing dr and then calling back that said prescribing drs when no PAs are filled out a month later. Having to get to appts when you dont feel great. communicate and be your sole advocate and voice and to some drs convince them (thankfully very few as I only keep the good ones on my team now a days) that 'hey, just bc I look fine doesnt mean I dont feel like sh^t.' In addition to that all (and more) keeping the responsibilies you agree to be it projects for APF or the blog for WI-ACHD or in some cases to Genzyme. People cant possibly understand what a life is like with MPS bc its not just living with the symptoms for some of us adults it is also managing everythng else that goes along with a progressive, chronic, multi-systemic disorder. Managing insur and in my case multiple insurance is in itself time consuming enough. So, yes, it's nice to hear a compliment when a provider thinks you are doing a good job. :)
She always asks how am I coping with it all and I said what I usually say 'what choice do we have?' Sink or swim essentially and I chose to swim and fight and by mostly taking it 'one day at a time' when it comes to the medical stuff I can deal with it and it just is what it is. I talked about people asking me when im going to stop having shunt revisions and why do we keep doing it + I understand most people know very little about hydro but that it does get frustrating sometimes when people try to second guess what they dont even know. . (I was purely venting) She just mentioned that while others may have thoughts only Dr.B and I know what is right and we will know if it ever got to a point where we werent making a difference. Right now we (Dr.Bragg) talk often about the shunt issues and what our 'next plan' is and both Dr.B and I agree that we are still making progress and we do get complete symptom resolution its just a matter of the non-compliant venttricles and thus the brain tissue/cell debries gets clogged in the shunt catheter when the ventricles collapse. Laurie (NP) said if one thing comes out of all this pre-op things it has helped her learn alot about the complexities of shunts and especially underlying MPS and shunt issues as well as given us a chance to get background history in med record caught up/ It also has been a pathway for some providers communicating a little when it comes to sharing records with each other, checking with each other on questions before these surgeriies and aware of all thats going on. It was a good general visit in which many things incidentally came up and I got some advice on various symptoms + management which is good and nice. One of many things we talked about and for which she was a little concerned was the leg pain/numbness and feet going numb even with walking and thought it might be low back - this is also what my PT thinks and so I do really need to ask Dr.Bragg about it. The pre-op was with the same NP who has done all the previous ones and who is most familiar with my care and she was just sending a note to my Endocrine dr + as well calling Dr.Bragg's nurse with a question.
Although when the shunt is not intermittently obstructed I feel reasonably "ok"/ Like today I was up for a few hours before I went and picked up my nephew and by that time I was feeling fairly good + Z and I had fun making lunch and drawing till he got picked up for his second class. By the appt this afternoon I was exhausted and had a headache but was still not horrible so I dont think anyone would have even been able to tell. On the other hand when the shunt is not working well (mid-afternoons, nights and mornings are the worst) I am incredibly nauseated, having these aweful stomach-bladder spasms again, and head feels like a ton of bricks + vision very fuzzy/foggy. I dont want another surgery but am looking fwd to it being over and to feeling better again. I dont think Dr.Bragg is certain what she wants to do yet and it may be a 'get in and look at' the shunt before she makes a final decision. I sent her an article about something shunt related the other day and she responded back yesterday that she would try to answer my ques including about a second shunt/final plan which is nice that she cares enough to take that time but I also am ok if she is just planning out what to do between now and next tues's surgery.
One of these times we will get the shunt working well for long term. Like ive also said before I get that people who know very little about shunts question why all these revisions but when something has like a 60% failure rate in general in the first month and I know many, many other pts both with and without MPS who've experienced the same problems I dont question what we are doing. I said to my NP that people wouldnt let their kid suffer or in a less than perfect analogy you wouldnt leave broken plumbing, right? Well I think of the shunt as broken plumbing except I have a good "plumber" so to speak.
I think I may have mentioned last week here that I got an email from the Ortho at UofMn - Dr.Walker who gave me the names of 2 Ortho-colleagues he knows who work at AFCH-UW (my neurosurgeons hospital). I fwd'd the email to Dr.Bragg's nurse and she responded that they like both drs and if I have any problems getting scheduled to let her know as they would help me get in/get an appt with either of the 2 docs. Both of these apparently handle very complex cases so I will be curious how it turns out!
I talked to the Cardiology secretary friday and she wasnt sure what my Cardiologist wanted scheduled (he had only said in his fup email that he should see me in clinic) and so was going to talk to him and get back to me.
** Jane sent me an emal, (she is Dr.E's nurse) and they have an Echo scheduled for thurs afternoon at 4 and appt at 5. I still am conflicted if these symptoms are really cardiac but guess Cardiol. must have some idea. I as I talked about alot recently always hate going in to appts when unsure about something and it does make me a little nervous! He's a really good doc that I do like, do trust and is easy to talk to it's purely just my not liking uncertainty and asking for help. I dont think this will hold up the shunt revision. I'll try to write a post about that appt/results thurs night or fri.
In the mean time going to quit and will be back here soon,
Thanks for stopping by,
Erica
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