Wednesday, May 13, 2009

ME/CFS Awareness Day



As many of you know....I was dx with CFS just before Christmas 2008. I think, it was a quick dx according to how long it takes for most people with CFS to be dx, but it seemed an eternity for me. Many, many unrelated symptoms, many various Drs. and specialists, many tests. The more I investigated, the more unanswered questions there were and the less we knew.

The second last appt. though, before visiting the Dr. who was finally able to dx me, was most disappointing. After almost a year of sometimes very frightening symptoms, I was told my problem was ......

Gas.

I was insulted and humiliated. To think I'd been so sick for so long...been tested for breast cancer, (among other cancers) as well as many other illnesses.....and then to be told it was gas. I may not be a trained medical Dr., but was quite sure it was more than just gas. I left that appt., disgusted....I really just wanted to crawl into bed and stay there. My attitude was quickly becoming "either this 'thing' (whatever it was) is going to finish me or I'll get better on my own"....either or....it was better than this.

If the last appt. (the one where I finally received dx) hadn't been already booked for months, I would have cancelled (and actually the thought crossed my mind). Thankfully, I did not and went to that appt. That specialist (an internist), dx me right away. He got what I was saying. He did not look at me like I was talking Martian. He did not look at me like I had three heads. He knew where I hurt, before I told him. The dx was made fast and more importantly correctly.

Thank you, Dr. Joshi!

I am so thankful for the internet. Finally, with a dx in hand, I was able to start my own research. I was amazed at some of the things I read.....there it was in black and white..... my condition, feelings symptoms and struggles summed up...right there before my eyes.

The name, Chronic Fatigue Syndrome, is such a misleading name and one that really makes a lot less of the disease than what it really is. Yesterday (May 12) was CFS Awareness Day, although it was not a very good day for me, so I missed it (yesterday, I was painfully aware what CFS is).

I've asked for permission to repost a couple of excellent posts about CFS. When/if I get that, I'll copy and paste them here. In the meantime, you can read them for yourself. Both of them are excellent descriptions of CFS and what it is really like.

This one, CFS Warrior, is written by a person who had just been awarded their PhD before being struck with CFS. In the profile on the right hand side bar of the blog is a brief look into what life was like just before the dx. The above post goes into a bit more detail of the fight with CFS.

and..

This one, Renee's Reflections, is written by Renee. She is living with CFS and Lyme Disease. In the post above, she lists some of the symptoms of CFS.

Both are so worth the read for anyone wanting to learn more about what living with CFS is really like.

(Just as an update for my own situation ....through many avenues.....such as these two above-noted bloggers who have left many tips, links, info etc. about this disease, as well as my own reading, research, the help of a homeopath, speaking with others who battle this, I'm making some good progress. I have a way to go yet, but I'm hopeful. I've learned I need to evaluate my progress over months rather than days and that helps immensely. Looking back to where I was a year ago....I have improved greatly.)

Edited to Add:

I received permission from both bloggers...but am having difficulty getting some of it copied and pasted here properly.....(computers....grrr...)....the alignment seems to be off here, so I encourage you to check out the above links. They sum up symptoms and what life is like/can be like with this illness.

9 comments:

cfswarrior said...

Hi Linda-

Thank you so much for your comments. It means a lot. Feel free to repost my post on your blog.

The process of getting diagnosed is so long. I'm just astounded that one doctor diagnosed you as having gas! I wish there was a way to make these sorts of things really public.

Everytime I visit your blog I'm in awe of those photographs.

Wishing you much peace-

Terri

Shannon said...

I'm so glad you are seeing some progress! Praying that there will be much more progress in the near future! Off to read the links.
(((HUGS)))

Becky said...

Sorry your day was not a good one. I keep you in my prayers. If I went 2500 miles away I would be more help to you.

((hugs))

Renee said...

Thank you for sharing your story Linda. I am so glad that you were able to find a doctor who believed you and knew what CFS is. how could any one diagnose you with gas? I have thought of a few words to describe this doctor ~ like idiot... but my hubby would say to pray for him instead!
I would be honored to have you use my post. Anything that you think would help others in learning about CFS or finding the help they need.

At Home on the Rock... said...

Thanks everyone!

Terri, I'm glad you enjoy the pics. I would much rather be down there with my dh and ds looking at the icebergs instead of watching from above.....one day...I hope to be able to go down there too. (I couldn't get parts to paste properly, so I left a link to your blog instead. Thanks for the permission to do so.)

Thanks Shannon.

Thanks Becky. I appreciate your prayers and thoughts.

Renee...I have the same thoughts as you...but your hubby is probably right. I cannot though go back to that Dr., I just have no faith in any future dx I may get. (I couldn't get it all to copy properly, so I left a link to your blog. Thanks for the permission to copy it though)

Michaela Dunn Leeper said...

Bless you, m'dear! I am still so thankful after the confusion & heartache you went through over this to have some answers. I'm so proud of you for sticking to it until you met someone that was willing to listen!!!

I miss you!

At Home on the Rock... said...

Thanks, Kayla....sorry I haven't been around much...time has gotten away from me and I've had a couple of bad days. I haven't gone though...

Anonymous said...

Hi,
I was wondering if you checked out your symptoms on the list of "Candida Patience."

Try a simple test:
http://www.candidasupport.org/test_saliva.html

Myself is struggling with many health problems since years. 12 years ago I was diagnosed with Fibromyalgia. Than I did not have all the other symptoms that are more obvious now: itching under arm, white coat on the tongue, feeling terrible after eating any sweets...

Write more if you would like to know more: saraildiko@yahoo.com
Have a blessed Christmas,
Sara

At Home on the Rock... said...

Thanks, Sara...I will check that out!