"The truth is rarely pure and never simple" (Oscar Wilde).
This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder.
Monday, June 20, 2011
Faith in adversity
“My God, My God, why have you forsaken me” – Mark
Words that one could often say and ask – especially one of us living with MPS (or any chronic illness for that matter)… But really why not me? Why not you? I don’t know why God has chosen me to have MPS – I don’t really think it’s because I am any stronger than any other person or because I am any more ‘fit’ than any other ‘normal’ person but I think it is because sometimes God lays before us things we cannot possibly comprehend – challenges in which we either leap or we fall. I don’t always handle having MPS so perfectly (but no person is perfect and we all must realize this in order to become better christians) but I try to look at it as ‘why not me?”Why shouldn’t it have been me – instead of say one of my siblings? Though in the incredibly rough times I wish I’d feel better and I wish that I didn’t have to explain to the 9000th person what MPS is, why I look so normal if I have a disorder that has affected nearly every organ and body system and have had to explain to what seems like the 50th person that no that isn’t right and this is how it should have been billed or covered or approved. In the end I usually realize that while I am feeling incredibly frustrated in that moment – I know my savior could have felt a 100 x’s more frustrated in all he went through and yet he went forth with glory and faith and willingness despite all the thorns he faced. I usually realize later after having faced a trial that this is what God has given me and surelyhe knows the very path he has set forth for me. I can’t possibly always understand why I have to face the life I do but t I can try to learn and grow from all that is set before me.“Always be prepared to give answer to everyone who asks you to give the reason for the hope that you have.” – 1 Peter 3:15
. “My grace is sufficient for you, for my power is made perfect in weakness.” – Corinthians 2 12:9
Ive always had a really hard time talking about myself – sometimes we as patients just need things that are our own and that we don’t always share with everyone – sometimes it does feel like as patients you become ‘community property’ to the doctors and the medical establishment and then an open book to the family and friends around you. I am not a very good open book and a lousy investment for a community property. I think if someone where looking for a return on investment health information wise from me regarding my own health they’d probably be sorely disappointed.I actually really enjoy sharing what I know health wise about MPS in general and helping to educate the medical establishment and families about these disorders, what to look for, the little unusual differences in MPS related health problems vs normal non-MPS health disorders.(ventricles in communicating hydrocephalus for instance and how these rarely expand but that cannot be used to rule out increased intracranial pressure) .Ask me about these same problems in myself and I’ll likely tell you a little but either tell you a site to go to in order to get more information or hand you information on the problems vs going in to great detail about what is going on with myself and if your family you know I just don’t talk about most of it a lot – sometimes you need a place/people who are free of the medical stuff!. I think I have gotten better about sharing my own health issues with the medical establishement because ive realized 9 times out of 10 I will know more than the provider I am seeing and it is my responsibility fair or not to share information on what MPS is, and how it presents so I can get proper care.I look to my savior and what he did in order to try and overcome my shyness in talking about my health issues – he after all is in control and knows the path I am to take. A paragraph I came across in the monthly ‘Forward in Christ’ magazine seems fitting – “Don’t ever forget that things and events in this world that offer so much grief and trouble and confusion cannot overcome God’s people.” – Mark Shroeder– No matter the suffering we feel – our Lord is greater and always in command – he will heal and guide and protect our hearts and minds and souls and I am learning that I can share about my own self and sometimes when I just don’t want to share that’s ok to – not every person needs to know everything!
“For I know the plans I have for you, declares theLord, plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11
Today after infusion (which took closer to 4 1/2 hours and for which I was extremely ready to be over) I went from Childrens Hospital (Milw) to Elmbrook and saw my Pain Management dr which went well. She is one of my better drs and one in which I keep in closer contact with via email, occasional text (during the surgery a few weeks back I used this and email to update her) or phone as she is easily available after hours although I rarely ever use that because I hate taking peoples time even if they dont mind! She and I talked about her feelings regarding my surgery outcome (extremely happy about the relief of most headaches and she just said she felt really upset that I had yet more issues to deal with when she first read my text post-surgery about the spine nerve root issues and injury. We talked though about the feeling that this atleast the most complicating issues will heal as my drs in madison feel it is just temporary problems caused by the swelling, irritation and nerves needing to heal. We talked about some of my drs and considering changing onesl ike my neurologist (who I actually really liked my neurologist she just does not have the time and my PM dr said she was switching some of her other pts to other neurology drs now) and we talked about the urology stuff and some urologists that she knows if for some reason I dont like the UW group but we do both think they will be ok especially since they seem to have worked so well with my Neurosurgeon without having met me while I was in the hospital for the post-op period. We talked about more in general drs lack of understanding of ramifications of un-treated communicating hydrocephalus and she talked some about how concerning it was the problems that would have occured and far worse had my neurosurgeon not caught my lumbar spine compression. (again 2 for 1 - I could look at this as a bad situation the having to self cath and having had the UTIs + the swelling and numbness in my lower back and numbness in L leg. (likely periperhal neuropathy secondary to nerve injury and neurogenic bladder/bowel).. Otherwise we agreed on increasing the Lyrica for now to 3x's a day at a 75mg dose but 150mgs at bedtime. to try and cut down the nerve signal in order to help healing and prevent long term nerve pain signals from going hay-wire and becoming over-active even after the nerves heal. If the lyrica would cause side effects she just asked me to call and will cut back the dose and we'll try something else. She also was fine with the continued use of the lidoderm patches at my very lower back below the incision which help with the nerve pain and work well. (ironically the work by numbing the area but the area is already numb so not sure how that works in helping the nerves!?!?
All for now, will update after tomorrow appt at UW. (hop skipping the state this week :) )