slightly better...

ok, he needed an advil at 230 last night--tylenol actually, then one at 11am, then one at 4pm and it is 9pm now and it is starting to hurt again as the tylenol wears off. Yet another day of diarrhea..probably all the advil. Has had for about 5 days now, but at least just once/day. Still not good though. Overall spirits today were good. We had Marilyn come for 3 hrs. and they played hide and seek and prior to that he was RC racing his cars. They did some drawing and also did some Farmville. He had mango, bananas and oranges for Breakfast. Cheese and yogurt for snacks. 2 VJ, 1 green smoothie, 1 bowl millet soup, pistachios and raisins and peanut butter and banana and carob chips. He is calm at the moment. We are praying hard to God every night for his headaches to go away. We are trying to calm him down from his bloodwork fears. We know we can beat and conquer this. We are so thrilled that the iron seems to be giving him MORE energy.

We talked during our date, about how we need to add more to his life. He said how about moving back to Edm. with family. But they are all 'of this world' and into materialism and other than gatherings, will we have anything to do with them?? Such a hard decision. fish oil 2x 90mL iron floradix, vitamin,

Walking Zombies...

It is friday at 9:33am...here is a recount of yesterday. No improvement...he had usual breakfast, some cheese, millet/lentil soup for lunch, rice and VJ for supper, VJ for snack prior and green smoothie prior and more cheese. 2 t fish oil, probiotic, NO SULFA.as we took him off for day due to stress of potential TMJ issue. 40 Ml iron as we raise it slowly to 120ml. Advil at 10am, then 4pm, then 8pm then 10pm then 5am. All half doses that is why some are doubled up.

Overall, his day was really good--but I have to remember he is living on advil now and that takes all pain away--but now he has diarrhea again...this could get crazy. He raced cars with Kyle, he played farmville and poptropica. He read to Kara. BUT , come bedtime, the pain gets crazy and he cries and cries. I was up till midnight with him then slept till 2pm then up at 5am. Then slept 7-9am.

He says the pain is in his jaw and head a little right now and that is all that is real bad.

Almost midnight and he is crying out owie owie again. I hear Kevin going now. He played well all day with rests doing Farmville or watching tv. Playing with his new RC cars from Kelly and Jane. I hear him say his head is real bad. He had advil at 10 am then 4pm and then 8pm and a gravol. Had a nightmare/nightsweat. Was screaming out. Had 90ml iron today...2 t fishoil, had usual breakfast, cheese, goat yogurt for lunch, millet soup, quinoa and sweet potato for supper with brocolli and goat cheese. One VJ. Had 1 sulfa today. Talked to Shelagh and she mentioned maybe being off sulfa while doing PT would be better...good point...but we don't know. He needs to gain weight so bad. Had diarrhea again today for the 3rd day--is it the advil???

New back pain due to fall--now he can't stand up straight sometimes...he says hurts further up. Wrist and forearm still sore from fall. Saying owie still....

Overall his day was fairly good. Nights are crazy bad!!!! BAd, Bad,Bad.

UGhhh!!

OK, this is all just really overwhelmingly horrible. Cory STILL has this jaw-headache thing. He is living on advil. He awoke and had his sulfa at 9am, advil at 10am, iron at 11am, chia seeds and oj with raisins for B, advil kicked in and he felt better. Did farmville with Kyle for awhile waiting for Robin the Arabic Drummer to come for our 12pm lesson. He had cheese slices and a VJ. We went to Buckshot Books and then to the bus depot to get Jane's gift she sent and a few other errands. Cory's head started getting bad, so we gave another advil in the van (just half doses always) at 4:30pm. He came home and it got better so he opened gifts and put together his lego racer car. He was having a great time racing with Kyle. Then the whole bedtime routine and I fell asleep early with Kara but apparently, he needed an advil at 10pm and then he was up by midnight (i don't know if he slept yet) and Kevin came and got me by 1230am and it is now 330pm and we just left him. Gave another advil at 2am as technically it is every 4 hrs that you can repeat a dose. His pains from the fall are also bothering him including his spine and neck. He had brocolli and cheese and another VJ for supper, his sulfa at 7pm, his iron at 9pm, 2 doses of fish oil and his dose of borage oil. I HATE giving the drugs...but what to do. I can't remember what he had for lunch...

I suppose this is why his back now hurts, he overdid it in the pool--found this online:

When the joints are actively inflamed, vigorous activity should be avoided because of the danger of intensifying joint inflammation or causing traumatic injury to structures weakened by inflammation. On the other hand, patients should be urged to maintain a modest level of activity to prevent joint laxity and muscular atrophy. Splinting of acutely inflamed joints, particularly at night and the use of walking aids (canes, walkers) are all effective means of reducing stress on specific joints. A consultation with a physical and an occupational therapist is recommended early in the course.

That frustrates me reading that as NO ONE HAS HELPED US EVEN AFTER THE DIAGNOSIS TO TELL US THIS!!!!! UGGGGHHHH!!!! OK, feel better...Cory had ANOTHER bad night--crying to sleep, had a tylenol and 1/2 advil. Cried and cried...all his same pains still hurting. Even went to Leona's to get whisky...

He woke up and had mild headache. We had dentist appt. at 9;15 to see if headaches were from tooth. NOPE. She said that it is coming in just fine and his headache sounds like a migraine but usually not at that young age. So, after being mistreated by her helper, we left and after a stop at Buckshot BOoks, we went home and they played with their new gogo guys they want to collect. I prepared for the trip to Dr. McCollisters.

Got there and reviewed everything and JUST as we were to go, the Dr. pulled Cory's chair away from him and Cory went to sit back down on it and fell on the hard cement floor on his sacrum....the MOST painful spot he has. I was dumbfounded and shocked and ABSOLUTELY sick to my stomach at what just happened. His arm lay limp so I know that was implicated in the fall. The Dr. has NO idea how much this hurt him.

I carried him out crying and put him in the back of the van, crying still...I am sick...we got home and I was happy to see him when he actually could walk again and got in better spirits. He could move his arm, but is still sore. I had my planned call with Tammy Resch and so I shared with her. She is empathetic as she has recently lost her SIL and has a 5yr old niece she is absolutely crazy about and cares so much for her well being. I joked with Kevin that perhaps it was God's way of moving his pelvis in place like the PT said yesterday--only GODSPEED!! He liked that thought--I do too!

We started the sulfa. drug tonight--sick about that too...1-3 mos. to show that it is working. Ironically with all of this, today (so far as it is 10:20 now) is the 1st day I have not given advil every 6 hrs!!! Poor guy!

5T Chia seeds for B
smoothie
fish oilx2
cod liver oil
borage oil
Increasing iron from 10ml to 120ml as per Dr. McCollister
chili for supper with goat cheese
lotsa mandarin oranges
veggie juice

Sleep please!

Had another headache last night at midnight. Writhing in complete pain with his sore molar, headache, elbow ache, backache and buttocks ache. So tough--nauseous again. Gave him another 1/2 advil at 6am and he did computer to take his mind off of it. I then gave him chia seeds (400cal) with OJ and raisins. However now, at 10am, he is bubbly after our bible study on patience. I then fed him chili for lunch and he played with his sister somewhat and did a little computer. Spirits good. We left for our physio. appt. at 1pm...spirits still good. Got into van and I noticed him being withdrawn while driving. I started singing to Kara's Old Mcd., Skip to my Lou, Michael Finnigan etc, and got Kyle into it and Kara, but Cory no. He is very inhibited and won't release.

So at the appt. he needed another half advil as headache/toothache was coming back. The PT seemed amazing and doesn't know what is up with Cory NOT gaining weight, but does know as a fact that his pelvis is all twisted and tilted and until we fix that, any drug will only hide pain and not fix twist. So Cory is to imagine a '$100 in his bum' and squeeze those cheeks together and tighten stomach at same time. Also, to always sit on some support for sacrum to adjust pelvis positioning. I truly felt this was a breakthrough!! Cory yawned alot but was good.

We then went to Toy's R Us as they have Christmas money from grandma, great grandma and A. Patti to spend as we didn't celebrate Christmas. SO, I said they can spend some of it on things they want. They got a stuffy each. We then went to Save On and the boys stayed in the van whilst Kara and I ran to get lettuce. Cory still in good spirits. Went to Buckshot Books and they got this pkg. of little figures for $3...although not thrilled about them buying anything, they usually get nothing and were thrilled about it. Cory still in good spirits--Kara got 3 mermaid books so she was thrilled!

Got home and wanted to do computer so I let them after I called 3 references and let A. Patti know she can book her flight. We now have new tenants coming on monday with 3 animals (yikes!--upped the rent $50/mo and will take full damage deposit. Anyway, made supper, Cory and Kyle did their thing for awhile and Cory good till about 7pm...slowly getting worse. Went to LEona's to get whiskey to dab on tooth. Cory couldn't take the taste--tried saltwater with warm--nope...so gave a tylenol. ..nothing. By 10pm he is crying in pain with mouth wide open, my stomach is nauseous. The WIERD thing is I had JUST said to Kevin a few nights back the day this all started, how Cory doesn't cry at night anymore or have bad dreams. THAT night it ALL started!! Yeesshhh!! What is with what I say!! Kevin finds it eerrie. He says I say stuff and it happens all the time so I have to watch what I say. Anyway, after seeing Lorenzo's oil, I figured his horrible screaming, in pain, figure, wasn't as bad as that so I can do this!! So I just stayed by him, got a cold cloth, a half advil, water, massaged back and told story and he settled down.

SOMETHING is going on in his brain. He is angry at us as he yelled at us in his dream the other night. We have no privacy in our house and the only time we talk is in the livingroom at night and he probably hears us. Maybe he internalized something. But more than likely it was the bloodwork scare as it was THAT night this all started and he cried 2x that day alone and now the intense and constant headache and toothache and elbowache--he is making himself very ill....Lord, PLEASE help us and him...please help us heal him and help his spirits. Bring us and take us to where we need to be and with whom we need to be with. WE are trusting YOU 100%! I cannot do this alone and no I don't have to. I feel HORRIBLE! He shouldnt' have such pain--he shouldn't have to be scared of yet another darn needle! I have learnt so much through all this and I will stop at nothing and will not allow any useless or mean Dr. near him ever again. I have not been a great advocate...I have allowed undeserving doctors to assess him and hurt him with their haphazard movements--I have allowed them to talk down and mean to him by biting my tongue instead of cursing back to show support for him....please give me strength to deal with these people in a way pleasing to you. More importantly, PLEASE bring me only worthwhile people as I will no longer tolerate anyone without a heart and conscience.

No sleep again!

As I was mentioning, I got up again with Cory at 1:30 and couldnt' sleep after so I watched Lorenzo's oil at 330pm after I got Cory settled with another 1/2 motrin. Now almost 6am and will try and sleep. Lorenzo's Oil is old, but I have never seen it. Very inspirational! Breakfast-5T chia seeds, raisins, OJ. 3 pieces goat cheese, 1 c goats yogurt, Lunch-grilled cheese on gluten free bread. Then out for a drive and some walkin. He had got up with a headache last night and needed another at 10 am and another when we returned at 4pm. I don't know why the headache. I am hoping because his back molar is coming in. He just lost his bottom tooth beside his front permanent ones last week (finally!). For supper, he had chili and cheese and more yogurt, a veggie juice and a large OJ.

Good disposition all day on this rainy day. Just a sore head around his right eye and forehead--and of course his new back 'sacrum' pain and his buttock pain. Hope his headache goes away. Nice to get out of the house as a family. 2nd time since we have been home.

No Sleep

For me...yup, that selfish thing coming back. Cory woke up at 1:30 and although he went back to sleep after 1/2 a motrin, I couldn't go back to sleep...that nauseous feeling there again. So slept 11-1:30. He had 5T chia seeds and OJ/raisins for B, noodle soup and 1/2 banana sandwich for lunch, 3 pieces goat cheese, 1 lg. glass OJ and 1 lg. glass (16oz) veg. juice. He was active in the morning, then by 12:30, he sat to watch a cartoon, and that was that. Can barely walk down the hallway. I gave him 1/2 motrin around 4pm as he had fairly bad pain--he didn't really want it, but I want him to have it. Had some good laughs watching Madagascar Penguins. I went to park with Kara today, and the boys stayed and did lego and played with dad.

Roast beef and sweet potato, carrot and potato for supper with gravy, goat's yogurt with agave for snack--oh and some popcorn. Felt good all night because of advil. Rambuncitious and happy. But awoke whining at 1:30 due to elbow and jaw pain and head pain and leg pain. Rear molar is breaking through and we think he slept funny on his arm last night thus the pain the last few nights.

Another Hard Day

Still nauseous...his shoulder hurts, he can't walk, in lots of pain and had diarrhea twice today. He had blueberry goat yogurt for breakfast, goat cheese for a snack, 3 slices, rice noodle soup for lunch with cabbage and salt as well as a pina colada smoothie, he had a veggie juice for snack, roast beef and potatoes for supper, chia seeds with orange juice and raisins for snack and banana sandwich.

We went outside for a little while just as Marilyn came by to look for caterpillers. He was in his wheelchair. We watched how'd they do that, read, did bible study and they talked with the Mahes for about 2 hrs!! God bless her for calling! They did a skype video call. Tomorrow I will veggie juice only and see how that goes. WHY is he not gaining weight?? Overall spirits ok until dad was going to take him to Coombs and then a little thing occured about him needing a needle and he cried for the 2nd time as he is scared to get more needles--poor guy. He really enjoyed the time with Jennifer. He is still making lots of sounds. He stayed in bed most of the day or in his green chair with just the short 30 min. outside in the sun as it was a beautiful 10c day!

slept through the night

After midnight, Cory slept through the night. He had some computer time as he had such an irritating cough that would not allow him to sleep and it hurt his back and buttock pain bad. He was in tears. I was happy to see him up walking this morning. BUT the energy and good spirits only lasted until 11:30 when he tried to get up after playing lego on his bed with his brother. The pain was bad. I massaged him. He had to go to the washroom...1st time he had diarrhea again since July. But no more today--he used to go 20x/day so I will just see where this goes. I started goats yogurt and cheese with him yesterday. He also had oatmeal and dates for breakfast both days, soup for lunch both days, and rice noodles and sauce both days and a veggie juice. We are about to put him on the sulpha. drug but I found a study here that shows an alternative and am trying to find out of a local practitioner. It is now 2:30 and he is watching Bugs Bunny with the crew after resting in his room. He has started making all sorts of funny sounds lately and am working on trying to get him to watch that. He shakes his leg often due to the pain.
2pm had diarrhea again--hmm..has not done this since July. Lying and playing lego now at 4pm with Kyle while I make pot roast for supper. Trying to keep it all together...

No more diarrhea today. Had some of my pot roast with yam, potatos, and carrots for supper. His sacroillic pain was just too bad to eat much so i fed him. Kevin and I had a serious talk about him with his coughing etc. as lungs, heart and breathing can all be affected by RA and specifically AS. I am nauseous yes, I am angry yes--at so many doctors that never took us seriously at the start. Here is an excerpt from an article I read today: "Move your hands from the top of your pelvis at your sides around to your back where you will feel a bump just to the side of your spine. That's the sacroiliac joint, where your pelvic bones attach to your spine. If it hurts to touch that spot and when you bend forward or backward, you probably have sacroiliitis." OK--the major complaint Cory had was that the 'bony spot' in his back hurt REAL bad to touch--DUH! Had any doctor shown any brains at the start, we could have really gotten to this sooner. Instead, we were chased out of medical clinics saying there was nothing wrong with him and we were 'wasting THEIR time!'.

Anyway, I am working hard to make his QUALITY OF LIFE good. Very challenging when I am busy cooking, cleaning, with 2 other kids, my OWN self-esteem challenges, paying bills, doing taxes, organizing people to come help him, physio., etc. I have to REALLY die to self here. I really need to remember Matthew 11:28, 29, and Romans 12:9–21.

The most common things in your diet that will cause a problem are corn, wheat, soy, dairy, citrus and sugar. The top three worst offenders are pasteurized milk, soy and gluten (wheat and other grains).--Dr. Mercola

Fear!

Fear--not supposed to have fear...supposed to trust in God...but I fail miserably at lots of those 'supposed tos' and right now, this PMS week, fear is one of them. Only fear of Cory though...nothing else phases me and I can trust in the Lord for everything else...I guess because everything else is fine at the moment.. thus no need to have fear. But, when Cory now has pain in his back and front hip and back buttock and caught another cold (or allergy or ??) and now has this grunting, gasping, gurgling, grunting x4 sequence going on whenever he tries to talk, I just think 'overload, too much, can't take anymore...HELP!!' Really, a person can only take so much sometimes. And with all that has gone on with the Haiti earthquake, the dolphin movie I just saw, all injustices out there, I am just weaker in resolve at the moment.

Now, I am at a crossroads, whether to take Psalm 118.8 literally or not. Ughh...I struggle with putting him on any drugs. I lost my mom to doctors and drugs, I am struggling here in a way I have never struggled. I thought dealing with my mom was hard for all those years...this is way worse as I am in charge of all decisions...my mom was grown and to a certain extent, was in charge of hers...both very difficult situations. Traveling gave me a break from the gloom I feel I am back into. The rut of being isolated with no local friends to care or family to help. It is night time, always scarier for me for some reason...I am scared, I am scared to put him on the sulpha drug, but I am equally scared not to. He is 11 and STILL only 44 lbs...I need HELP! I did get some and we are working on things..but his last swim caused back pain. I need to make him rest more I think-less advil (hard on kidney's and I am concerned about my kidney dream where he walks up to me and says, mommy, my kidneys are failing' I see that as a warning. So I am ultra-scared of drugs...scary time right now. Want my boy running and playing and happy and STRONG and NOT in PAIN! Lord, I BEG you, please hear my fears and help me. I am truly scared..