My favorite folks ! :)

23 August 2010

Do i have anything to say?

It seems i've gone thru phases of having lots to say, but not doing it.  Now that i'm doing it, i doubt i have much to say.

Hard to believe i've not written in a week.  These pics are just random from my file as i've not taken many pics lately either.

We have done things.  We had Nina & her family here to dinner on Friday & i very much enjoyed it.

However, i'm faced with the fact that i'm in more pain, constant but not severe pain, & i can't do as much as i was doing even a couple of months ago.  I was listening to a video by Dr. Cheney who has done a lot of research with CFS/CFIDS.  I didn't find it very reassuring, but it is good to know there is a physical cause for this & i'm not just creating it in my brain.  I don't even know why i'm getting worse as i'm doing all the right things with bad food out, diet of good food, & using supplements.  

But i don't WANT to lose any more functioning & i WANT to be able to socialize, so i'm feeling rather desperate.  It seems to me that life would be very dark if i couldn't go with Duane to OC any more or if i couldn't work any more.  I am NOT Gitz, much as i admire her. 

I DID tell my MIL Jeanet about the CFS/CFIDS last week, tho i put it in terms of Diastolic Dysfunction rather than fatigue, because everyone gets tired & so they often don't understand the level of fatigue i'm experiencing.  I had to do it because 1. I was afraid she would think me just lazy & 2. I cannot do a weekend like the last one again.  She seemed to understand at some level, although she probably still does not.  But now if i return to the house & have to lie down right away, we can say, "This is what Kathryn was telling you about her limitations."  I also need to stop pushing myself so hard in OC so that i will "look normal."

I also had a conversation with Duane telling him that i have gotten worse & that we need to find something to do about this.  He didn't want to hear it, i know, & i feel badly that he has to live with this every day.  But i also can't keep pushing even tho i want to.  Of course, that brings up some real questions as we have been entertaining more, because i WANT to & i deeply desire to build more relationships with people.  Facebook, & blogging & email just don't seem to be doing that.  Maybe i'm going about it in the wrong way.  

I also don't want to become a constant complainer.  I hate to think that i am.

  In the past couple of years i've tried a Naturopathic Doctor, a Concierge Doctor, & a Wellness Clinic.  Each time $200 or more out of pocket.  I've also done acupuncture regularly for a year or more, & i still get CranioSacral regularly (usually once a month).  I've kind of been spinning my wheels because there are several alternative or integrative medicine docs or clinics in OC, but just to simply see the doctor to try & figure out if they understand the problems & can address them can be $200-400 out of pocket.  I don't mind that if the doc is someone i can work with & who will help, but imagine doing that 10 times trying to find someone!  I get overwhelmed just thinking about it & trying to make a decision based on their web-site.  

Although, now that i think about it, my beginning to swirl downward seemed to start back when i stopped doing regular acupuncture.  

So, i've bit the bullet & made an appointment  with a doc a friend of mine sees.  Dear friend Cindy has had a lot of success with an integrative medicine group in OC.  I had tried one before that just didn't seem to "get it."  I may need to return to acupuncture too.  

So, i guess i had plenty to say but none of it very pleasant or uplifting.  I'd prefer to write happy, funny posts.  I think that i'm grieving & trying to accept my life (& childlessness continues to be part of that grief).  So, i've not had much to say 'cause i'd prefer not to be so negative.  I like to think of myself as a realistic optimist, but i've struggled with the "optimistic" part recently.

There it is.  Such as it is.  

It is hot in OC.  I'm dreading it, but down we go tomorrow.  :)



Lorie said...

I understand where you are coming from with this post so much.

My CFS has not become quite as debilitating as yours...yet. Your blog has been on my mind a lot lately. I have wanted to share my story on my blog however there are people that know me "in real life" that read it. I have been considering starting another blog about my illness anonymously.

The big problem is that my own husband does not believe CFS is a real illness. He thinks I am lazy. I push myself so hard and then suffer. The "bad days" he just thinks I am extra lazy.

He does believe the migraines are real because they are so bad that I vomit, loose my vision and fall down. Those are "real" symptoms.

Anyway, sorry to make this about me. I guess I wanted to get it out even more than I realized. lol

You do seem optimistic to me. Most importantly, you are honest. Thank you for your honesty. In a small way, it has helped me to know I am not alone.

Anonymous said...

Dear Kathryn,
I don't have CFS and as such cannot fully understand what you are going through. However, I did suffer from depression which can quite incapacitate a person. I don't know anything about treatments but an integrated approach does seem more promising. I do hope that blogging and social contacts help. Just know that we are happy to read your happy posts as well as your less happy ones.

Meadowlark said...

Chicklet, we don't visit to hear you be all upbeat and cheery and phony. We visit because you're you. And sometimes that's morose and sometimes that's crabby and sometimes that's cheery and we're ok with it in ALL those ways.

Know that we're always here and you're not running us off that easily!

Rosemary said...

I'm right there with Meadowlark - we read your blog because we like you and we like seeing the real person - so don't be chirpy and sunshine and buttercupts if you're feeling more like dust bunnies and swamp water. It's okay.

I wish with all my heart that you weren't in so much pain, I can't imagine feeling severe pain all the time, it sounds like agony. I hope that those in your family and circle of friends can understand and be supportive in person to you. Like those of us here online want to be supportive of you.

Sending you love and happy thoughts.

Kathryn said...

Oh, Lorie, how very hard that would be. We should email. I've several sources that give the physical differences between CFS & depression or laziness or any other label someone wants to slap on it.

I so appreciate you coming by.

Mr. Squirrel, thank you for coming too. I've dealt with depression, too, & you're right, it is debilitating. I appreciate your kind words. I love the connection with blog folks, & with seeing people at Facebook, too, but on long days when i'm waiting for someone to "show up" it just doesn't feel quite as good as being able to really connect.

Meadowlark - it is always a joy to hear from you! Is your San Diego trip going to take you thru OC in the middle of the week? (Want to do "coffee"?) Or is Big Bear a huge detour for you? I'd so delight to be able to meet you in person. :)

Rosemary, always my superhero cheerleader! I am not in severe pain, just constant. But the fatigue is becoming more severe. Thank you for your support & friendship. :)

Friends, i do appreciate blogging friendships. Sometimes i just feel so "needy" that all i want is more. !!! Thank you for your friendship & kind words. :)

Amrita said...

Sorry to hear about your suffering Kathryn. I have suffered a lot of pain and I think I have some kind of fatigue syndrome too.

Please ake care and get well soon.

Lorie said...

Thank you so much! I would love to email. Mine is:

I would love to see your resources. I don't think it will change him but it helps me to know I'm not crazy or lazy. :)

Thank you for your kind words on my blog. You are very sweet.

lisa said...

I think everyone has pretty much said what needed to be said. I also happen to think the same way! I also love seeing your beautiful photos! We all blog for ourselves and if people happen to like it and come back great! if not well that is their choice!

Kathryn said...

Hi Amrita - i do keep you in my prayers. You do & deal with so much that it would simply flatten me! I hope that God continues to bless you & give you the strength for what you need to do & that your pain will abate. Thank you for being such a faithful reader & caring friend. :)

Lorie - i will write when i've a chance.

Lisa from the wetlands! Hope you aren't too soggy. :) Thank you for such a wise & sensible perspective. I always enjoy your pics, so very beautiful Thank you.

Bob-kat said...

I'm with others here. This is your place to write about things that you wnat to share or get off your chest or whatever! I think blogging brings richer relationships that can develop rather then FB. I find FB a rather empty experience, trying to communicate via a one line status update with people all vying for attention via the news feed!

Anyway, sorry you are feeling so crappy. For what it is worth I think you did the right thing in explaining your problem to your MIL. I hope over time she comes to understand more. I know how you feel about the fatigue as suffering from an underactive thyroid I have been so bad at times that I could barely funtion. Even just concentrating and keeping my eyes open was a real effort and it wasn't because I was lazy. People think they know what you mena when you say you're tired but they really don't. It needs a new word as the addition of words such as 'extra' or 'very' even come close to explaining it. Hope things improve soon :)

Stacey said...

Certainly don't feel bad about sharing the positive days and the more "negative" ones. I appreciate those who write about all of the ups and downs. There are so many folks here to support you when things aren't so sunny. I hope there will soon be brighter days.

P.S. Love the pics! The daisy one is stunning. My fave.

donna said...

I am glad I found you or you found me, whichever it was....I think you found me. Thanks for being genuine and sharing from the "heart". I would hate to find out I have been befriending and visiting a fake :):) Write away!!

But anyways wanted to thank you for checking on me and leaving comments through some tough times and when my blogging was interrupted. Blessed you didn't forget me. We all need more friends like you.

Big hugs to you!

Kathryn said...

Bob-kat - i so agree. FB is so limited in developing real connections (although it has helped me with a couple of people). I sure love & appreciate my blogging friends. :)

"People think they know what you mean when you say you're tired but they really don't." Yes, you've said it!

Hi Stacey. :) Looking forward to when Lily joins your family. I hope you will be able to post about that (or start a new blog for her & write about her). Someone else i follow has a new baby & is too busy to post, & i miss hearing about it, even tho i know it will be rather painful.

Daisies are my favorite, too.

Hi Donna! I'm so glad we found each other! I don't usually remember where i find people, but in our case i think it was that thru David i found Amrita, & thru her i found Mrs. Mac & you. :) (I didn't even remember this but David mentioned something like this to me a while back.)

I'm glad that we can encourage one another. I don't "lose" people that are precious to me! The Google Reader helps with that, tho. When people post it informs me. I only remove blogs where i feel i've not made a "connection" to the person. Have a great day!

Jeanine said...

I agree with Meadowlark (she is one of my blogger buddies too) just take it one day at a time!

I would like to ask where did you take the pic of the waterfall? It is beautiful!

Kathryn said...

Hi Jeanine!

I don't know if Meadowlark found me or i found her, but i love following her blog. :)

Actually, my husband Duane took the waterfall pic. It is of Cumberland Falls in eastern Kentucky. We were there last year in June visiting family. It is one of the few waterfalls in the world that will create a rainbow in the moonlight at certain times of the month & year (easier to see in the winter).