Discussion in 'Spirituality/Worship' started by pepper, Jan 5, 2007.

  1. pepper

    pepper New Member

    Hi Cath,

    Did I ever tell you that was my grandmother's name? Loved my dear nanny.

    How are you feeling today? Has there been any word on Lyrica being approved? Have you gone into a flare from the Humira?

    You haven't been around much so I am thinking that you are in another flare. Praying for you, dear friend.

    Love, Judy
  2. caffey

    caffey New Member

    Thanks for your concern. I am still waiting for the approval on the Lyrica. I was talking to the people at Humira and they said that the section 8's are all backed up. I had my first dose yesterday of Humira. It left me feeling like crap. again or still? Today is really damp dark and yucky. Can you believe it? They laid off 1,00 people in Collingwood and closed the ski resort. I guess the Rideau Canal is a swimming pool. No skating this year eh? I would love to be able to skate it. Well hopefully some year. You have to hope and dream eh? I started decreasing the prednisone yesterday. My body is so messed up from the flares and the up and down with the prednisone the past few months it is so exhausted and of course every time it goes up I can't sleep. My feet and ankles are so swollen and sore. This morning for the first time I had to ask the staff in the grocery store to help me get something off the shelf. I hate that. I am around. I am just watching the board. There is a lot of heavy stuff happening and it is too much for me right now. I am watching and praying over you and some others and unless God tells me different that is enough for now. So you are loved and prayed for and I am gaining weight+++ sitting beside you lol. Discovered I can make soft oatmeal cookies by going to the bulk food store all you have to do is add water and raisins and by the time tea is made I have homemade cookies. Now I am a happy How are you holding up? Is your body ok? Are you flaring? I am trying to understand what is wrong with some people. Do you mind me asking you what is CFS and how is it treated? Just curious. Have the in laws left yet? How is Cammie doing? My girlfriend and I have been having some interesting discussions lately on people becoming Christians before they die because of my dad and his Alzheimers. It is an interesting theological discussion. For my dad we believe God is doing something because of him turning from being a jerk to the devoted father and making sure everything is in place. I guess I am saying don't give up on him. I just remembered something a pastor said years ago. He said with people like Cammie pray that God will speak to him in the middle of the night when no one is around and there aren't any distractions. I think I will start to do that. Also we may never know until we get to heaven. I hope they can give him relief from the pain soon. I am a nut when it comes to pain relief. I hate to see people suffer needlessly. I really hope they can put him on the pump. How are things with your hubby's job prospects. Take care and keep in touch and let me know what I can do for you.
    Love ya
  3. pepper

    pepper New Member

    I'm sorry that the Humira left you feeling like crap - again or still. I hope that wears off. ??? You are in my prayers.

    I read your reply earlier today but haven't been able to spend any time here because there were two family crises that required my help. Crises solved.

    Meanwhile I have another sinus infection and am struggling with the side effects of the Biaxin on top of the symptoms.

    It's damp dark and yucky here too. No skating on the Rideau Canal for the first time since it opened in the late 60's. Winterlude will probably be cancelled. I haven't been skating on the Canal for 14 yrs. That is one of the things I really miss - skating and looking at the ice sculptures before sitting down with hot chocolate and a Beaver Tail. Sigh! I hope that you can get to do it some day. It is a wonderful experience. We have a guest room!

    There is an artificial skating rink close to here and when I was healthy I used to stop there after work and skate for awhile before picking the kids up at the babysitter's. I used to be able to skate all winter long, even when we had a warm spell because the ice is artificial and has a higher freezing point. It has hardly been open at all this year.

    The first batch of inlaws have left. I am preparing for the second batch. Three sisters are arriving in a week or so. I hope this darn sinus infection is gone by the time they get here because I feel miserable. Two of them are nurses so I hope that they can rattle some cages and get Cam some pain relief. He is still suffering so. I just wish his wife would be an advocate for him but she doesn't seem able to do it.

    When my hubby was visiting him the other day, Cam broached the subject of the afterlife and seemed to want to discuss it with my DH. However he didn't seem comfortable discussing it in front of his wife and my DH couldn't get her to leave. He wants to give her a "day off" from caring for Cam so that he can talk privately with him. That is promising, isn't it, that Cam is at least thinking of this?

    I see "flares" discussed all the time on the CFS/FM message board and I don't really know if CFS people get flares. We have bad spells, worse spells and better spells which I suppose could be interpreted as "flares" but it seems to describe the bad spells of FM better for some reason.

    CFS is a complicated illness but I can describe it best by remembering what it was like when I first came down with it and couldn't believe how my body was betraying me. I had mono first and was really tired and slept all day and all night. Then everything flipped and I couldn't sleep and the exhaustion became indescribable. The exhaustion is so complete that when this first happened I thought that I should be dead. I thought that no one could ever be this exhausted and still be alive. Yet here I am 14 yrs later, alive and kicking.

    When I wake up in the morning, I am exhausted. In the first months of illness I would wake up and think, "Boy, I really overdid the aerobics last night." Then I'd remember that I had spent the day before on the couch but still had the exhaustion and pain of an extra heavy aerobic workout. During worse spells my arms and legs feel like they are encased in cement. During those spells climbing stairs is an ordeal and walking or standing is agonizing.

    I used to work full time, have most of the responsibility of raising my boys, did all my own cooking and cleaning (my house used to be spotless), took university courses at night to upgrade, taught an aerobics class three nights a week, was a hockey mom, a baseball mom and a Cub Scout mom. Every night when my DH got home, usually close to midnight, we went for a 3 mile power walk. I was an avid cross-country skiier and occasional downhill skiier so you can see that laziness was not my style.

    Now I usually have 1- 1 1/2 hrs of energy just after noon and have to decide how to use it. If I wash my hair, then making supper is probably not an option. If I go for a 10-15 min. walk, that could be it for the day. Any appointment is usually all I can do in the day. If I push myself beyond that, then I crash and pay the price in pain and exhaustion for days. It is called "post-exertional malaise" and reminds you just how sick you are.

    The exhaustion and frustration of not being able to do all the things that I want to do every day are the worst parts of this DD. Other things overlap with FM symptoms. I can't read much any more. I used to be an avid reader. I was an English Major and a school librarian for many years so you can imagine how I loved to read. Now I can read a chapter or two when I am having a good day.

    The energy fluctuates of course and I am very excited when I get extra energy. Then I am inclined to overdo it and pay the price by crashing for days.

    Insomnia is probably the second worse thing - you know all about that. I awaken hundreds of times during the night as shown on a sleep study. I spend a good part of every night totally awake.

    I have had malignant melanoma and have been dx with DDD, OA, thyroid disease, myofascial pain, high BP, multiple allergies, liver problems, clinical depression, anxiety disorder and cardiac problems as well as FM. All these things were probably a result of my messed-up immune system with CFS.

    On top of that there is the brain fog, constant headache, irritable bowel syndrome, sensory overload (severe over-reaction to sudden noises, loud noise, crowds, confusion, bright light, etc.) and recurrent infections. My body cannot regulate its temperature any more. That was one of the first symptoms. It was January and I did yard duty in my spring jacket and it was a very cold Jan. I am so hot all the time - broke the air conditioner twice by keeping it too cold in here. All this varies from person to person and from day to day but this is what I deal with.

    I have spent over $100,000 out of pocket over the past 14 yrs trying to find something that works. I have yet to find it. The closest I have come is with BioCranial treatments which my ND does. I have a little more (sometimes a lot more) energy after a treatment. He has also had success reducing my syptoms with homeopathic treatments but the effects don't last and he can't figure out why not. He is working on it.

    So, that was a very long answer to what seems like a very simple question but CFS is very involved. I hate the name and hope that it is changed because most people say "I must have that too" because everybody is tired. Nobody who hasn't experienced CFS exhaustion could begin to understand how all-consuming it is. I knew several people with CFS before I got it and I remember thinking how nice it must be to get to stay home from work "just because they're tired". God got me for thinking that one!

    I am glad you asked this question because answering it took my mind off my mouth full of aching teeth from the sinus infection!

    Praying that you have a better day tomorrow, Cath. And that you haven't fallen asleep reading this long post!

    Love, Judy

    [This Message was Edited on 01/07/2007]