I don't know if blogging at this time is a good idea as I'm not really in a positive state but there is always positive in anything, if we just shift our focus. So I will endeavor to do that, to shift my focus. I feel depressed right now, for many reasons. Partly, because I haven't gotten back on my meds since the sickness at the first of the year. I keep trying to but they are affecting me adversely, so I'm at a standstill, more-or-less. Also,I think I was unprepared for the progression of the disease and how encompassing it is.I think I've come to see that pain albeit horrific is just part of it. Trouble swallowing, vision loss, muscle atrophy and so much more are new dimensions to deal with. We are all capable of getting depressed, and facing these emotions head-on is actually healthy/therapeutic, but staying in the depression is not healthy.I see such despair in the pain community right now; much more than usual. And I'm here to ask that we would be earnestly praying for each other I know that I fare better when I look at the Lord instead of the circumstance. I pray that when we walk through the fire we would not be burned...Isaiah 43:2
Love to all who are fighting this battle.
Jane G.
Lifting you up, Jane.
ReplyDeleteAs for blogging when you're not in a good mood, I always feel that transparency in blogging is the best thing. I know your blog is to encourage people, so it may seem counter, I think it still works toward that end.
Blessings poured out all over you today.
~C
Thanks, Christy. And congratulations on your ministerial license. I'm so happy for you and so proud of you. I just found out about it tonight.
DeleteDear Jane,
ReplyDeleteYou mention here about RSD being more than a pain condition. The examples you used are exactly what I am experiencing, yet no doctor (even my pain management doc who is supposed to know all about RSD) have told me about this. The muscle atrophy I understand, but the trouble swallowing.....the vision issues....how does it happen? For the past year I have been having issues with my voice. Primarily after a very short conversation it will get rhaspy and quiet. I first noticed it at one of my sons Basketball games when I tried to cheer for him. I opened my mouth and yelled out....and all that came out was this strangled squeek. For the last 4 to 5 months (maybe more) I have been having trouble swallowing. Sometimes I have to cough my food back up as it it stuck. It terrifies me. My primary care physician actually just sent me for an upper GI the other day, but made no indication that it could be RSD related. As far as the vision goes, within the past two years I have gone from someone with excellent vision to not being able to read the words on my medicine bottles. Jane, I know you are not a doctor, but I am sure you know more about this disease than most the physicians in the world today. Where can I get the information to show them that this could be RSD related? Where can I find out how to treat it? I say "treating it" with a little doubt, I admit. I have tried everything every doctor has recommended from a Spinal Chord Stimulator to Hyperbaric Oxygen Therapy, as well as tons of medication. I too am so discouraged and depressed. In a few months the first of my 4 children will be getting married. My baby girl......I want so much to do all the mom things with her, but most days I can't even get out of bed. More than anything, I want to be able to walk with her and my husband down the isle. Right now my right leg is completely extended with my foot pointing as if I were a ballerina. It will not move. I have been trying to work on it every day to loosen it up, but the pain it causes is unbearable. Oh my goodness.....I cant believe I have just been rambling on and on. I am sorry. I guess I have alot to ask, and to say, regarding RSD and what it has done to my life. Unfortunately, finding someone who can listen and understand is hard. Thank you for writing your blog.....I am going to read EVERY post. I will also add you to my prayers. I pray Gods blessing upon you....that you may have victory with your insurance company...that you will have less pain....that you will be encouraged. Thank you so much!
Lyn,
DeleteThanks for your comment and your prayers. I will be praying for you, too. I understand your RSD struggles. As you said, I'm not a doctor. Yet, patients learn about their condition as they live with it and deal with it. RSDSA is a good resource; as is PARC, the Canadian equivalent.
http://www.rsdcanada.org/parc/english/index.html
There's an excellent book called Living with RSDS by Linda Lang. It is co-authored by her and her doctor. It is an excellent resource/reference book. I gave it to two of my doctors and even took it to court for my SSD hearing.
American RSD Hope is another good resource, as are Here to Help and Hope Over Pain. There is a new treatment called Calmare, which is non-invasive and has an 80% success rate.
http://www2.turnto10.com/lifestyles/2012/mar/13/health-check-chronic-pain-treatment-ar-963406/
I can relate to your thoughts about grandchildren,as I went through all of that. My book In the Blink of an Eye is about living with/coping with RSD, and in the book I discuss alternatives for those things we can't do any longer,
Feel free to friend me on FB if you like. The help we give each other makes RSD a bit easier. Also, there's an RSD Symptom Checker on FB i.e. a group that asks and answers questions about symptoms. It's not doctors. It's interactive with other patients. So if your doctor doesn't know something, you can learn about it from someone else whose doctor does.
Blessings,
Jane Gonzales