Fibro...what?

I have been putting this off for a while. I really hate talking about my trials especially ones that will make other people feel sorry for me. I am afraid that this post will illicit that kind of response. But before you all ring out in a chorus of poor Debbie I want you to know that I don't feel sorry for myself at all. In fact I wouldn't even be talking about this except for one reason and one reason only - I hope what I am going through will somehow help someone else. We cannot help others unless we are willing to talk about things that happen to us and this is just plain to important to keep to myself so I am going public...

I would not describe myself as physically active in an athletic way; however, I have always been very active in other ways and in very good health most of my life, if not all of it. I have been able to do pretty much whatever I set my mind to doing and pretty much took that for granted. Today my mind writes checks my body can't cash and I find myself unable to do many things I use to enjoy.

I have lots of talents and abilities that allow me to give service and work in unique ways. I have sewn draperies and shades professionally, worked as a personal chef, I have been a political activist for Charter Schools and now I own my own business making clothes for premature babies while they are in the hospital. Some of my other talents and interests include: heirloom sewing, tatting (lace making) sewing, scrapbooking, reading, tai chi, yoga, painting, taking long walks, holding and playing with my grandchildren, gourmet cooking, entertaining and interior decorating. Up until two years ago I could enjoy all of these things and more. Little did I know how drastically my life would change?

I need to point out that I am not a baby when it comes to pain. I have dealt with pain in my life before but nothing like this! About two years ago I started to lose range of motion in both my shoulders with pain so severe that I couldn't even lift my arms over my head. I got very concerned and went to the doctor. And this started a game called "toss the Debbie" from one doctor to another. I'll spare you to details - but basically they couldn't figure out what was wrong with me...exactly. We have now narrowed it down to two things and I could have either one or both. Fibromyalgia or non-degenerative Rheumatoid Arthritis. I sort of feel like I am on "Let's Make a Deal" and I have just seen what is behind door number 1 & 2 and I am thinking I'll take door number 3!

I love how the doctors put this; "the good news is that what you have will not kill you but the bad news is you will have to deal with this the rest of your life!" What?!?!? You're kidding me right?

Let it suffice to say that the pain is now widespread. It started in my right shoulder and within days spread to my left shoulder. From there it went to my hips (both) hips. It has traveled down my arms to include my wrists, hands and fingers. My knees hurt and so do my ankles and feet. Even my heels hurt! It is difficult to describe the type of pain this is: sometimes it is a dull ache, sometimes it is stabbing, and sometimes it feels like burning. My joints seem to be effected but the real problem feels more like it is in my muscles. My joints feel like they are on fire and my muscles ache and I get stabs of pain with specific movements. My whole body feels sluggish, weak and heavy. Simple movements used to happen automatically and now I cannot do anything without thinking about it either just to execute it or because doing so causes pain. And the pain is more intense in rainy,stormy or cold weather.

Here is a list of some of the ways this pain has changed my life:

• I can’t sleep. Any time I move or roll over the pain is excruciating. It wakes me up and I do not sleep soundly all night.
• I cannot hold my grandchildren without worrying that I will drop them, especially the 3 year old who wiggles.
• I cannot put my hands on my hips without severe pain and willpower. I used to stand like this naturally.
• I cannot even dress myself without sitting down to put on my pants; my legs won’t lift high enough. I can’t do my hair and make-up without considerable pain in my shoulders, arms and hands.
• Yoga is out of the question any more. luckily I can still do Tai Chi
• I cannot open jars by myself.
• If I sit on the floor to play with my grandson, I can’t get off the floor without help or kneeling on all fours and using a table to get off the floor.
• I cannot sit for very long without become extremely stiff. Sometimes I cannot stand up without help.
• For some reason I cannot concentrate as well as I used to; I become distracted easily, forget what I was doing. My mind feels cloudy, like I am in a fog.
• I am exhausted all the time. I have no energy. I wake up having no energy. It takes me several hours in the morning to get things moving. I can still do Tai chi and that helps but it is very difficult and painful.
• We have two sets of stairs in my home. I would often run up and down them multiple times a day. I considered this part of my exercise. Now I don’t run anywhere especially on the stairs. I have to use the rail to hang on to so I don’t fall.
• I start to feel better about 1 in the afternoon and then it is short lived and I am exhausted again by dinner time.
• My grip is weak. It makes it hard to drive a car, pick things up, hold the hand of a toddler etc.
• Cooking is hard and difficult because of lifting pots and pans, opening jars, cutting, stirring, kneading etc. I can’t carry in the groceries from the car.
• I can’t put my arms behind me to zip, tie or button anything.
• I can’t even read for any length of time. Holding a book hurts my hands and arms.
• Sewing is very hard from several standpoints; sitting, movement of hands, arms and shoulders. Standing at the ironing board.
• My children have to be careful how they touch me. Sometimes just grabbing my arm to get my attention sends a stab of pain down my arm. Poking me on the arm hurts so bad it makes me cry. And sometimes even hugs hurt.
• 
  

So I can just look forward to the above list for the rest of my life! NOT!!!

The most insidious part about this illness is that it is what you are diagnosed with once they can't find anything else. So it is diagnosis by default. And to add insult to injury only a few years ago most doctors thought it was an illness in the mind...oh please give me a break! I don't know about ALL the women out there but I have better things to do with my time than run to the doctor every week and willingly submit to all sorts of tests that involve needles just for the fun of it. Geez!

Now I need to stop before I go too far down the pitty road. I think you get the idea that this chronic illness stinks, is no fun and nobody in their right mind would make up such a thing...ever!

Now the question begs to be asked, What can you do about it? My answer is plenty!

Last year I had a blessing where the Lord promised me that I would be healed. I am going to go with that. It has been a year since then and the improvements have been minimal but I am not giving up. This illness is by all accounts incurable but I am unwilling to accept that especially in light of my blessing. Apparently, others are unwilling to accept it as well. Last week I think I found my solution. I am not sure but I think so. And this brings me to the point of this blog post - I thought it would be good if we find out all about it together.

As luck would have it there just so happens to be a Fibromyalgia Clinic in Salt Lake! What are the chances??? But it is true! And they have a holistic approach to treatment, which I like and they think that people can be cured or live without pain, which I also like and believe. So I have a reservation to attend a free seminar for more information on January 14th. I know...I know what you are saying...What if they are a bunch of quacks?? I have it covered. This is why I want to check it out and report it back to you. If I have to tell you then I will know in a few sentences of typing if I can tell it with a straight face. So wish me luck!