Seems to be a theme in my life. I would have preferred a different theme, but alas, this chose me. I remember many times in my life where I just get near anyone, and something that was always simple, seemed to not be working. I started saying that it was me, I have the ability to not only be confused, but to confuse all those within a 10' radius, and I would apologize for the inconvenience my spreading confusion had on them. Which only made them look at me very strangely, and even more confused.
I remember being in karate and being at the water fountain, and Daryl said to me, 'Shelley, quite honestly, I don't know how you even get by in life'. Of course I would just laugh. I had the ability to be standing the opposite direction facing the whole group during a kata and wondering how I botched that up...then I would sheepishly look over at my Sensei who would almost roll his eyes and simply tell me to turn around. But, I was very determined, and I was very good at the sport--confused or not!
I think the phrase I used the most in life was, 'I don't get it'. Which I would then proceed to ensure that no one else got it either. Once again, I am in that life place of 'I don't get it'. This time the topic isn't particularly funny. My son is very, very ill. He has been diagnosed with progressive myopathy, given a wheelchair, then diagnosed with rheumatoid arthritis, then juvenile arthritis with sacroiliitis with IBD, but then I cured the diarrhea, so they sent a blood test to California that said no IBD, even though a previous colonoscopy said small dotted ulcerations throughout. Yet this is an 11 yr old weighing in at a whopping 45 lbs. How can they look at one blood test and say no GI issues...
We are put on a waiting list for an MRI for the small intestine that was to take one year. WE wait as we always do. A year passes and I call to see and all I get is, "I'm afraid he never made the list, it will be 14 mos. now." I said nevermind, we are leaving BC for now and I will deal with it in AB. He starts getting worse in Jan. 10, so I beg for an x-ray. Both the GP and the Pediatrician say no. When do they ever say no to x-rays and when do I ever beg... He ends up with chest pains and I take him to emergency, and I BEG the doctor to x-ray his sacral area as well. They do. The results show all is FINE. So, despite new back pains, I feel relieved. This was March '10. On April 20, 2010, the day the dollar reached par with the US, the oil rig blew up in the Gulf, and 4/20 was taking downtown Vancouver by storm, we go to the hospital for an appt. Dr. Turner, the ped. rheum. there says Cory must have an x-ray...I had to 'laugh' as I had been begging for months for an x-ray that no one would give me (and I detest radiation so you know how important it was to me), and I told her, 'no problem, we just had one done last month and all was fine and they can send it to you.' She insisted on doing another. I was not happy. We argued. I gave in. One month later I get a letter in the mail just prior to leaving for AB that he has very, very severe destruction of his SI joints, his trochanter, and has bone spurs in his hip area and needs to start Remicaid treatments immediately.
What?? Just a month ago the x-ray was 'non-remarkable'. I was shocked to say the least. We pursued a follow up in AB that took us to a ped. rheumatologist who did an MRI and said it was fairly unremarkable and the radiologist would like to see the x-rays to confirm the letter they had as it made no sense. I had asked for them to be sent as did they on a seperate occasion. Never.showed.up. She says, based on her expert opinion, he does not have rheumatoid arthritis. But had scar tissue on the sacral joint from perhaps a post-arthritic process. She refers us to GI yet again and back to neuromuscular. How could the one x-ray have showed all these things?? I ask that they admit him and give him TPN based on a friend's recommendations of working with Crohn's patients. He is not yet diagnosed, but a naturopath did a stool sample and said yes, it was Crohns. The GI, Dr. Turner (same name as the lovely ped. we had in Vancouver) said no admittance till we wait a month and see colonoscopy results.
Now Cory is sick and they canceled the colonoscopy on thursday. He has lost weight. His tongue is all blotchy and stings. I am beyond confused. I don't want to trust their ways, but he is SO frail and I am at a lost as to what to feed him to get him to gain weight. GAIN WEIGHT!!! GAIN WEIGHT!! How can they not look at him, thinner than the African children on those commercials, and not do something or see him as critical. For me, doing something is the TPN treatment just to kickstart some nutrition in him and give his intestines a break. Confused...I don't get it...why is this so hard...what puzzle pieces am I missing...I KNOW this is nutrition based...I need to work this out... I NEED to stay strong...I CAN find the answers...but, I may need 'some' interim help. I will insist that I am on every team meeting as Cory has anxiety issues with doctors and all interactions between someone in a hospital and him has to be conducted as gentle as possible KNOWING that his tics could start up at any moment. His eyes could start rolling back into his sockets again for weeks on end, his TMJ symptoms could come back for weeks, his inability to talk and mostly grunt could come back...HE HAS HAD IT with the medical profession.
And quite frankly, SO HAVE I! If I just had more help...a mother who could be another body and could be with the kids so that I could create recipes and vice versa. Try, try again. It took Jordan Rubin 2 years of traveling the world to find his answer. I know we will find ours. I know. I may be confused now, but everything I was ever confused about, I eventually excelled at and thrived at and beat out most others at. The answers will come. Cory will regain a full life, and all this will just be a learning curve in our lives. Just.You.Wait.
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