Living with MS. Feb.09
Appointment with Dr. Crawford today went very well although I did again forget
a few important things I had hoped to speak with him about and it does not seem that we have the follow up appointment that we were supposed to start doing a week after any regular appointments for that reason. So that anything that I missed at the 1st one could then be discussed… I had before going called a very nice & busy lady I know hoping she could accompany me… I wasn’t feeling very strong and concerned that there might be some attitude necessary to make myself heard (there wasn’t and I hope I will soon get used to the fact that Dr.Crawford doesn’t seem to have any problem accepting his patients point of views & priorities). She left a note on my facebook apologizing (as if she owes me an apology for being a busy Mom who prioritizes her children; that’s among the many things I admire in her) but also during the phone call mentioned she reads the blog sometimes SO, if you are reading this Shelley, I want you to know that just hearing your up beat voice and all the busy children in the background, being reminded of everything you juggle so adeptly gave me a bit of a kick in the butt, I was a little embarrassed that all I had to do was get myself to the clinic and I was being a baby and had even thought of asking you to add something to your already super busy schedule. You are an inspiration and I thank you for your kind voice & words, I felt better after talking to you (“I am woman, hear me roar”) and like I had got just a little of your strength through the phone somehow 🙂 THANK YOU, and yes, everything went very well 🙂
Among my MS symptoms have been cognitive difficulties which vary in severity but always seem to be affecting me at some level. In the beginning, these were quite troubling, I lost the ability to play piano, type and even for one day I had found myself able to speak only french. This happened while I was in hospital, alone, in Thunder Bay. I had been flown out for MRI’s to get a diagnosis and was very weak, in significant pain and quite frightened when it seemed there wasn’t a french speaking nurse or doctor anywhere near me and no efforts were made to find either. Again, this is one of those situations that are so common for me (and I believe anyone battling chronic illnesses) where by the time I was well enough to perhaps file the proper complaints I did not want to waste any more of my life, on hospitals & MS, than I already had lost.
Anyways, Dr. Crawford has a talent for making these regular apointments, of which I am not a fan, seem quite useful & he has been nice enough to stretch them out to every couple months. I am dissapointed today realizing I did not show him the bumps or swelling I feel around my port-a-cath site which are new, I am concerned not knowing what these mean or what there cause may be, when I feel around the port with my fingers (like you would for a breast self-exam) I would, if I had to guess, say it feels like there are veins that are swollen which I can push around without any pain or change. 
Also, I wanted to finally get a doctor’s opinion regarding some skin concerns… In the last year my skin seems to have alot of trouble healing. I will pick at something that seems like nothing. The photo here is of a teeny tiny spot which I thought was just the scab from an attempted IV. I thought I would just remove the spot which looked like a pin prick and then it bled alot, somehow got bigger, and now it hurts if you touch it. There are a number of these on my arms and I’m a little worried since my Dad had skin cancer years ago. So, I will call the clinic on Monday and hopefully he will squeeze me in this week. He had also asked if I needed prescriptions for anything to which I said no, knowing as I said this that my answer was not accurate and wanting to say yes… Not sure what my problem (this was MY fault as I was NOT rushed, Dr.Crawford as I mentioned asked if I needed anything) was there but now I am missing a prescription for sublingual ativan . (…why that matters)
ALL THAT just to say I need a follow up appointment this week, so fingers crossed that it won’t be a big deal.
We discussed the need to figure out and option to the constant visits to the ER I am making currently for diluadid injecitons which would allow me to have reasonable reduction in the level of pain I am dealing with through meds taken at home and decided to try the fentanyl patch again. Although I had tried this last summer, there has been debate regarding appropriate conversions and I’m hopeful that the reason it didn’t work then might just have been to low a dose rather which would mean there is a chance for us to figure out a dose that will be adequate for pain management freeing me from the ongoing trips to the hospital (which, this week, cost me 260$ in taxi’s and much time lost in my life as well as making Lloyd late for school/sports repeatedly and having Emeraude miss her first CanSkate carnival practice completely). Just the fact that Dr.Crawford understands I cannot live tied to the er and going there 2-5 times a day for injections is a really big deal. I feel that he respects my need for a life away from the hospital and understands the things (like being active with my kids, able to be a good Mom, well enough to ski, snowmobile, slide, etc with them, and able to write – ei. make a living support my kids and myself) that are important to me and trying to keep them as a priority in the choices we make for treatments/pain management.
He asked about whether I was willing to see Dr.Brown, the neurologist, via telehealth and I said yes and lt him know that I had been told by the nurses at the MS Clinic in Thunder Bay that I was at the top of the list for these (he had told me this was important to him before Christmas and wanting to show my appreciation for his efforts and that I am able to compromise I had asked for the appointment). He also asked if he could sit in on the appointment, I was thrilled that he had remembered my request for this (Jeremy had done so for a telehealth apointment and I had felt it was helpful and made the apointment more useful since, as doctors, they have more informed/intelligent questions/comments for the specialist than I, on my own, would have) and told him that I would be quite grateful if he took the time to attend. I feel that he, even more so perhaps than some random doctor, may be able to act as an advocate for me, speaking to the neurologist, as he seems to be hearing my concern and undrestanding my priorities (I realize this is redundant but it really is a huge deal to finally have a doctor who appears sincerely concerned with what matters to me & the kids).
Although I would have seriously considered it had he said I needed to try the IVIg again (this is a very scary prospect after the awful side effects that accompanied the most recent treatment which I had of course asked for – treatments, not side effects) I was EXTREMELY relieved and grateful that he did not. He did not think it was worth it (neither did I!!!) for the minute improvements we recorded considering the weeklong agony, exhaustion and frustration that I went through. He takes the consequences any of my treatments/medications have on my life and quality there of into consideration in a way no other (recent) physician has and that is priceless to me.
I left the appointment feeling hopeful, encouraged that Dr.Crawford really seems to understand how difficult it is, when my days are already short, to have more time stollen by MS, getting pain meds at the ER. We decided to try the Fentanyl patch again and so I put that on at 17h. So far it’s not doing anything (it is now actually saturday late afternoon and I have added another one @ 14h) but our pharmacist warned me to be patient as it could take a few days to get in my system and start really working. The prospect of returning to a more normal life that doesn’t include daily (read many/day) trips to the ER is almost more than I want to let myself hope for as it is hard to accept when our attempts at bettering my quality of life don’t quite succeed as much as hoped.
Prayers & crossed fingers appreciated!
