Dear CaMama, Craig, Curley, Erin, and Straydog,
Thank you all for your encouragement. I hear you. With each post I read I am getting stronger.
Erin I am so sorry for all the pain you are in. Have they ever considered a pain pump? It is just awful to see you guys suffering so much.
I know the Humira RN's are helpful too. I called on Friday and asked if they had any suggestions on how to get over the fear.
I need to go on Monday for the TB test. I am not afraid of that test. I have to get them ever so often being in the education system.
However, I am now coughing up huge amounts of phlegm. And I have a massive headache near my eyebrows.
Last week I assumed the headache was related to the fact that I had treatment for pre cancerous spots on my skin near both eyebrows, the right eyebrow being worse.
I had pain from that and I had a lot of nasal congestion, and there was actually blood in my ears. My ears felt like there was water in them. So I did a no- no and used a q-tip to clear out the water, and found blood. I also had a sore throat.
My stiffness and pain is getting so bad in my one knee I am also sure it is broken. This knee has severe oa in it and they have been suggesting I get it replaced for the past ten years. I had arthoroscopic surgery on it, which only made it worse in 2002.
All the sleeping I am doing either from the new sleep aid, Trazodone 50 mg. or the anti depressant Zoloft 50mg. is not helping with the stiffness, I know Trazodone is actually an anti depressant but is used for sleep aid. However when I sleep that long, when I do get up to go to the washroom I have to get my husband to carry me there.
Either that or my bad knee is broken????
I also would like to ask my new family doc to give me Imovane for sleeping. It is shorter acting.
I will stay on the Zoloft and pray that it improves my mood and energy level.
I will have to ask the doc to give me a couple pacs of Zithromax to kick this sinus out of me, before I begin the Humira.
I need to call the rheumy and set up an appointment so she can yell at me for not starting the Humira yet. It is weird. last summer when she first told me about
it, I was all hyped up to get it, even excited. However it almost took a year to get government approval. Our health care system insists I try things like methotrexate and arava before agreeing to the more expensive Humira. I do not understand this, since it is the medical insurance through my previous employer who is paying for it. I did have to put out the money first and am still waiting to get reimbursed. But I think last August I would have done it right then and there.
Craig it was so kind of you to write me your encouraging news. Congratulations on feeling better. I agree with your rheumy though. Do not push yourself too hard yet. Oreo describes her wellness as being a chemical remission. Do you think of it the same way?
CaMama I am so glad to here you got the Enbrel. I think that is a great idea to do this a.s.a.p. This way you may feel significantly better before your camping trip. How old did you say your kids were again? I am still doing some research for you in regards to your daughter and possible ADD. I have one question, is she able to have control some of the time? There is ADD, attention deficit disorder and then ADDH , when you add the H it means that the child also is hyperactive, difficulty sleeping, runs and has bounds of energy all the time. The "h" part usually settles down by the time a child is 13 or so. My son was diagnosed with this when he was 3. At that time my sister was director of paediatrics, and she told me that the local hospital was trying to give young patients who might be ADDH, cups of coffee or tea or cola drinks. All of these are stimulants like Ritalin, and if the child is ADD they will most likely feel calmer when they get a stimulant. Most of us have natural stimulants in our bodies, but children with ADDH, are extremely active because they are trying to increase the stimulus in their body that they are lacking. My son has required to have 3 cokes a day in order to concentrate ever since he was little. Some times we give him tea instead. However this has fewer side effects than ritalin. Perhaps he has a mild case, because he does respond to this. I know it is a lot of pop and wish we could reduce it to no more than 2 per day. You could try giving your daughter coke cola and see if she is any better. When my son was 4 he only required a small amount to help him stay calm. Food dyes were bad for him. If the doc gave him an antibiotic liquid with red dye in it, he would not sleep for like 24 hours straight. The research that was done several years ago suggested that very few children were affected by diet. The one thing they did find was that there is no one consistent cure for ADD. You need to have a bag of tricks, what works one day may not work the next day. Most of these children are extremely intelligent. They often will settle down, if they are in the middle of a tantrum, and you say to them, "Did you know that sometimes the companies experiment with shampoo on animals, let's go and see if our shampoo bottles say they have not been tested on animals?" Once these kids are over 4 they respond well to discussions about
social issues to calm them down, it is a great trick to use if you are out in a restaurant. You could start a discussion about
handicapped people's rights etc.
Anyway camama I am still researching and hope I can come up with some ideas for you since my training is in educational psychology.
Erin, I forget, do you still take Enbrel? Did it stop working? Was this a drug tolerance thing. It would be great if you could get to the Mayo. I do not know anything about
this hospital, since I am in Canada.
I was talking to my husband and we were thinking of taking that new ferry from Toronto to the states, would that put us anywhere near you. I was wondering if it did if we could maybe meet for lunch, if you are up to it.
Curley I hope by the time you get this you are feeling better.
Wishing you all the best. It is now 5:30 in the morning. I did not take the sleeping tablet today.
Take care. Thank you all. I will keep you all in my prayers.
Sorry for the very long post.
Post Edited (effie) : 7/17/2005 3:35:09 AM (GMT-6)