I’ve been going through an old journal/blog of mine that I had set to private. It was basically a place where I vented to myself (lol) and also as a symptom tracker. It’s weird to read through it, I forgot just how truly awful things were. I’m posting these as I think they might help someone who’s newly ill/diagnosed/trying to get a diagnosis. I really was frustrated, sick, in pain, and flat out tired. I think it’s normal for someone who doesn’t really know what’s going on to have so many negative emotions. It takes time and repetition with those bad symptoms to not panic when you get them, to not be so angry, etc. I don’t buy that expression ‘time heals all wounds’ I think that’s bullshit. Time allows us to have experience with issues so they’re not so big, scary, awful. They become a little less. They still suck. I hope this helps someone out there. You are so not alone.
(I added these in the upper left hand corner of the blog, right next to About Me.)
Friendship, support, laughter, tears, empathy, encouragement, pumped-up, sometimes chided, love, celebrating, stories, mental hugs, strength, me too!s, vent sessions, pre-approved pity parties. This list could go on and on and you know what? I should make a complete list, as if it could ever be complete, a list of everything that I have gained in my life since I ‘lost’ my health.
I’ve had a few people ask me what, if any, good things have I gotten out of this whole chronic-life experience and I don’t even have to dig around to find one. The people. The women and men that I’ve met since 2006 are amazing. Amazing! The most understanding, giving people I’ve ever had the pleasure to have known. Somewhere in the mix I have become a better person myself. I wasn’t so bad to begin with (tooting own horn here) but I really feel that I have become a better person by going through this whole process.
Tolerance. I have so many friends now who are different than me. We tend to gravitate to people who are ‘like’ us. People that we meet in our lives, say through work or friends, we make friends with the ones who are most like us. Politics, religion, city or country, rock or soul, baseball or football, coke or pepsi. It’s just the way it is. That seems kind of silly right? But it really is how we find our mates in life and the people that we trust the most. When you have a large group of people with the one thing in common that is so extreme; disease and suffering, all of those other factors just drop off. We get to learn about people who are different than ourselves. I’ve learned that I STILL love some people after having to endure the political onslaught that rolled down my newfeed pre-election. HAHAHA oh my. You know who you are 🙂 Just using politics as an example, in the ‘real world’ i.e. pre-sickness, I probably wouldn’t sit down with someone with a zest for politics at the cafeteria at work because, hey, I would have to smile and nod while thinking ‘are you kidding me?’ And you can’t really start a friendship when you don’t have that common interest. Here’s where it gets good. When disease is the common interest, we learn to support, empathize, and build each other up for those really hard times. All of the other stuff falls off to the side and we get to know someone we might not have otherwise. Bonus! How lucky are we??? And what a way to be able to see people as a whole. Tolerance. It’s a good thing!
Third: understanding people better. I think that because of our loss, we gain a better understanding of all people. Our families that have to put up with a non-stop barrage of doctors visits, stuck in the bed times, seeing us at our base; worst and broken, fearing for our lives when we are in the hospital fighting for them. When you first get sick you think it’s all about you. Soon you realize it is far reaching and affects everyone who loves you. I can forgive myself now for being sick as it’s not a punishment. I can forgive my people who at times have been cruel though only through ignorance, and that went away pretty quickly as everyone wanted to learn all about the disease and what they couldn’t grasp on paper they got to witness first hand with someone they love. Love is the word that keeps popping up and man am I loved. And I love so strongly now, how could there have ever been another way??
OK, I want to share with you someone I met the other day. She has RA (rheumatoid arthritis) and writes the most awesome poems about her experiences. I sent her a message and asked if I could share one here and she said, yes! She is a very cool woman who I’ve no doubt that we will know each other for quite a while. You can just tell when you talk to someone that you will be friends, but instead of shrieking that out like the child that you are (meeeeee) you play it cool and use your big person voice and whatever social skills you have learned thus far. 🙂 Don’t be afraid Donna, I’m not a creeper or a stalker. he he he he
Here’s a poem that I loved, and felt it. And am going to share it with you.
Sometimes I just want to turn RA off for a while, One little switch could make me smile. There are other things I need to do, And other people who need me too. I’d produce these switches and give them away, To anyone suffering in any way. Just turn off all pain and flip happiness on. It’s my perfect invention that can’t go wrong.
Hey all, today is World Arthritis Day. A day of awareness for people with rheumatic disease. There are more than 200 rheumatic and musculoskeletal diseases (RMD’s). This year’s theme is ‘Move to Improve’.
You can click on the pic above and also the globe in the sidebar and be taken to the World Arthritis Day website. There you can find out more about today, get resources for yourself or to educate your loved ones, and have an opportunity to wave for WAD! You can submit your picture of you waving for World Arthritis Day. The photos are being put into a montage and the goal this year is 100,000 pictures. Countries are competing to see who has the most waves. =) You can see the tallies at the website.
I think this is a fun idea and we’ll be ‘waving’ here and sending ours in. I’ll be sure to post it here when we do. They’re accepting photos until October 31st, so it’s not too late to be involved. Anyone can wave; you don’t have to have a disease, you can wave to support your friend or family member.
Waving is a small physical activity, but a big gesture for people with rheumatic disease. It also ties in with this year’s theme which is movement, and we all know this is SO important. Now that doesn’t mean running a marathon, unless you can and um, like to run…That’s just something I never did enjoy even when my muscles were my own. But light exercise is very important to keep your muscles from atrophying.
My mantra is ‘baby steps, baby steps’. There was a time when I couldn’t walk more than a few feet, and even then had to rely on a walker. The couple of years of me being immobile really did a number on my muscles. My disease is a muscle-wasting disease to begin with, so I really need to stay as active as I can. Something I have not been so successful with lately btw, but that’s the good thing about a new day. A day to try again.
Stop in at the website. Click the counter to ‘wave’ in spirit. Let me know in the comments if you did, I’d love to see them!
I have dropped off the radar again. Not intentionally; the days just seem to meld into one long day, and I’ve been so sick, time is getting away from me. I haven’t talked to my best friend in at least a month. Again, not intentionally. I’ve written so many ‘I’m sorry’ emails in the past, I just don’t know what to say anymore. I feel extrememly guilty about isolating, but at the same time, I can’t seem to stop. I had a horrible realization a few days ago, and it was-I make it through each day and try and get well enough to make it to my next doctor visit. I actually missed my last one. I couldn’t get out of bed so C went and picked up my prescriptions. This is no way to live, I feel powerless to change it.
Between non-stop flaring and being a momma, I have no time for anything anymore. Facebook, my Christian groups, Flickr, television, nada. For those who aren’t computer-heads it’s not much of a big deal, but the computer has become part of my life since becoming ill. It’s my ticket out into civilization, lol. …
I am bed-bound at the moment and pretty darn low. I have written and revised and rehashed a post until is was about 2 sentences long to cut out all of my whining and/or negativity as my body is really kicking the crap out of me. I’m just going to post this awesome video about Erica.
The Arthritis Foundation has a campaign called the Power of 10. You watch the video, forward it to 10 people, and give a gift of 10 dollars. Let’s spread the word. Just click on the Power of 10 link and check it out. What a really great simple way we can all make a difference. God Bless.
I have some good news-(drumroll please) I finally got Medicare ( woo hoo!!!!)!!! I went 3 years with no insurance after I lost my job. The amount of money I owe for medical bills is astronomical. I think I can safely say that my credit isn’t credible anymore. No one will be giving me any loans in this lifetime, ha! Good thing I have The Big C. I told him if he tries to leave me I’m grabbing on to his ankles and he’ll have to try and run with me holding on.
Anyway, back to the Medicare. My primary care doc has given me a referral to be seen at the big state teaching hospital. Yeeeee hoooooooo!!!!! I finally have some kind of coverage that gets me in the door. I am so happy. For the past 3 1/2 years I’ve had doctors scratching their collective academic heads and going hmmm. Then I get a diagnosis, and I get it taken away. Peek-a-boo! It’s here and then it’s gone… The only one that hasn’t been taken away is the small fiber neuropathy. That’s because I had a biopsy and they could actually see it and diagnose it. It sucks that so many autoimmune diseases don’t have one clear test. It’s more of a symptom game and then you have to have a rheumatologist who’s willing to put their neck out and actually diagnose you before the average 6 to 11 year time-frame. As soon as I told my rheumy that I was going to be seen at the teaching hospital, he backpedaled on the Still’s and dermatomyositis. Even though I have the rashes and skin issues that go hand in hand with each and solid bloodwork. I just can’t wait to be seen at this hospital, I’ve been too sick for too long. I’m going to be seen in the rheumatology clinic but was assured that they would take a team approach on me and try and figure out what’s causing my Cushing’s and chronic edema before I explode. It wouldn’t be pretty that’s for sure. I am flaring with my RA right now ( I mean UCTD again) so I’m in a lot of pain in all of my joints and it makes it worse from my hips down because of all of the water pushing the bones in my feet apart and the pressure in my knees. As me and C would say, Oy! My pancreas! It’s what we say when we realize that either one of us is going on and on and on about body parts. It means, shut up, you sound like one of those people that like to tell you all about all of their aches and pains when you say hello. If you could feel your pancreas hurting, your pretty much hurting everywhere.
Change of subject: Here’s kind of a happy thing, for me anyway- I finally got Photoshop elements 8!!!! I am a digi scrappin fool I tell ya!!! I also got a few new kits from a wonderful designer and friend. And, I bought My Memories Suite. Yeah!!! That’s where I’ve been spending my free time lately. I am hooked. I could spend days just cruisin the online shops for kits, actions, or just elements. But-I don’t have much free time, or not as much as I would like that is.
The other day I was searching for the video camera. Our house is a little ‘cluttered’ now that I’m on a break from housework, ha! I was going through stacks of stuff in the corners of our family room and I found my bag of knitting. I just stared at it and was like, oh wow. When is the last time I’ve seen that bag and how did I ever have the time to knit?? I remember sitting on the loveseat upstairs at night and going through new patterns. What life was this in? I swear there aren’t enough hours in the day now. And I’m home all day so I don’t get it. It seems like I had more time when I was working full-time, but how can that be? Maybe it’s like money. The more you make the more you spend. The more time you have the more you need. I don’t know but I felt a little sad just thinking about it.
I’m off to check on some websites and figure out which ones I’m going to drop. I have way too many social media sites and I’m thoroughly addicted to those too so this is going to be hard. I know for sure I’m keeping my Christian women sites, all of my photography sites, and facebook. The rest is going to be hard to choose. I’m leaving you with a few shots from this time last year. Right now we are having a cold spell (12 degrees at night brrr) and at this time last year we had this freak snow-then-ice storm that left us without power, freezing, and me taking a million shots of the ice. Enjoy and until next time
no copy or use of photos allowed without express written consent from genius, uh I mean blog author 🙂
This video asks to forward on to friends and family and this is the fastest and easiest way to do it!
I heart the Arthritis Foundation!
I’ve been gone for a few months. I’ll go into that in another post, loooong story. I would like to apologize to all the readers who left a comment in my absence. I have comments set on moderation so they won’t show up until I see them and unfortunately I didn’t get them up until tonight. Thank you for reading my blog, and thank you for your comments. I will respond to them tonorrow, my eyes are closing. (wimp here) Thanks again everyone for hanging in there with me. And don’t forget to forward the video!!
Whenever I receive an update or an alert from the Arthritis or Lupus foundations, I pass it on here. This evening I was checking my email and saw this from yesterday. I was talking to my husband about what’s going on right now with the Senate yanking the 5.8 billion Prevention and Wellness Fund from it’s bill, and he told me that pulling for money (hoping/praying) to fund arthritis research isn’t what the economic stimulus is all about. Not his exact words, (he’s asleep now and I want to wake him up and ask him what he said again) Basically he’s saying that although it’s a great thing, putting money towards arthritis research isn’t going to positively help the economy short term and that’s what the stimulus package is all about. Long term for sure, but as for helping out now, nuh uh. And I say as an arthritis sufferer, I DON’T CARE. Is that wrong? Should I care that the money that will go towards research isn’t really what the economic stimulus package is really all about? That’s one man’s opinion anyway, what do you think?
From the Arthritis Foundation:
Urge Congress to Fund Arthritis Research and Prevention! Take Action!
Action is Needed Now
On Tuesday, the Senate passed an $838 billion economic stimulus bill. The House passed its own $819 billion version of the bill on Jan. 28. House and Senate negotiators will meet quickly to resolve differences in the wide-ranging package of spending and tax cuts (HR 1). Congress wants to pass a final bill in both chambers and send it to President Obama before leaving for a scheduled week long recess at the end of the week.
Arthritis Prevention: The Senate removed entirely a $5.8 billion Prevention and Wellness Fund provision from its bill. The House of Representatives included $3 billion in public health funding in its version of the bill. The Arthritis Foundation urges Congress to include this important House provision to fund potential arthritis programs in the stimulus bill. Investing in arthritis prevention at the Centers for Disease Control and Prevention, and in states across America, is not only an investment to help stimulate the economy, but also an investment in a healthier America. Arthritis is the most common cause of disability in the United States. Investing in prevention has a proven return. For every $1 invested in community level prevention, there is a savings of over $5 dollars in public and private health care expenditures within just 5 years. Support for the CDC and evidence based state and private programs to combat arthritis will help reduce disability, pain and health care costs for the millions of Americans with arthritis.
Arthritis Research: As we alerted you last week, the Senate did include $10 billion in funding for the National Institutes of Health. However, no such provision exists in the House bill. The Arthritis Foundation urges Congress to retain this Senate passed critical funding for our nation’s biomedical research enterprise. In 2007, every $1 million that the public invested in NIH generated $2.21 million in new business activity across the nation. Within weeks, funding for high-quality, peer reviewed arthritis research projects could be allocated nationwide, stimulating local economies through salaries and purchase of equipment, laboratory supplies, and vendor services.
Please contact your Members of Congress NOW about arthritis research and prevention funding in the American Recovery and Reinvestment Act of 2009.
Did you know that over 46 million adults have arthritis and over 300,000 kids do as well? You have a chance to tell Congress that more needs to be done, at the 2009 Advocacy and Kids’ Summit!
At the Summit you will meet personally with your Members of Congress, or their staff, and will have the chance to tell your story. How has it affected you? Your family? What is day to day life like for you? Anything you would like to say about living with JRA, RA, osteoarthritis, or if you suffer from one of the more than hundred other forms of arthritis? Now’s your chance!
Advocates will learn how to best communicate with their elected officials, attend a training workshop to improve their advocacy skills, meet with other advocates and network, and more.
Look forward to getting together with not just Members of Congress, (which is huge btw) but also people just like you and me; people who have arthritis and can relate to all of the trials and tribulations. It’s not just a matter of pain, even chronic debilitating pain… but money issues, health insurance or lack thereof, medicines, stress on family life, marriage, etc. We all need to know we are not alone, and boy, we sure aren’t with numbers like those above.
Register now for the 2009 Advocacy and Kids’ Summit, Capitol Hill, Washington D.C., March 2-4, 2009. For more information please click this link here.
Here’s some good news- The Arthritis Foundation Public Policy and Advocacy Department is offering stipends to attend. Stipends are limited to $1000 for an individual to $1200 for a family. Application deadline is Monday January 12, 2009.
I’m going to list the congressional districts or states eligible for the stipends. If you are eligible and would like a copy of the application please contact the Public Policy and Advocacy Department at firstname.lastname@example.org or 202-887-1700
Congressional Districts or States Eligible
1. Richard Shelby, AL
2. Lisa Murkowski, AK
3. John B. Shadegg, AZ 3rd
4. Mike Ross, AR 4th
5. Nancy Pelosi, CA 8th
6. Barbara Lee, CA 9th
7. Anna Eshoo, CA 14th
8. Michael Honda, CA 15th
9. Lois Capps, CA 23rd
10. Henry A. Waxman, CA 30th
11. Hilda L. Solis, CA 32nd
12. Lucille Roybal- Allard, CA 34th
13. Diana DeGette, CO 1st
14. Rosa L. DeLauro, CT 3rd
15. C.W. Young, FL 10th
16. Nathan Deal, GA 9th
17. Daniel Inouye, HI
18. Mike Simpson, ID 2nd
19. Jesse L. Jackson, Jr., IL 2nd
20. Jan Schakowski, IL 9th
21. Steve Buyer, IN 4th
22. Tom Harkin, IA
23. Pat Roberts, KS
24. Edward Markey, MA 7th
25. Mike Rogers, MI 8th
26. Betty McCollum, MN 4th
27. Dennis R. Rehberg, MT
28. Dina Titus, NV 3rd
29. Judd Gregg NH
30. Frank Pallone, NJ 6th
31. Jeff Bingaman, NM
32. Nita M. Lowey, NY 18th
33. Sue Myrick, NC 9th
34. Tim Ryan, OH 17th
35. John Sullivan, OK 1st
36. John Murtha, PA 12th
37. Joseph R. Pitts, PA 16th
38. Tim Murphy, PA 18th
39. Patrick J. Kennedy, RI 1st
40. Bart Gordon, TN 6th
41. Marsha Blackburn, TN 7th
42. Joe Barton, TX 6th
43. Michael C. Burgess, TX 26th
44. Gene Green, TX 29th
45. Jim Matheson, UT 2nd
46. Bernard Sanders, VT
47. Jay Inslee, WA 1st
I would do just about anything to be able to go to this summit. Not only can we not afford it, my health has been so bad these last 3 months, I wonder what the future holds for me. I WANT to be well, I am doing my positive thinking, taking all of my meds, saying all of my prayers, and waiting. Some days are good, but most are not and I’m really really trying to see the sunny side of life right now. We have to pick up prescriptions tomorrow and they are going to set us back $1000. Each month that’s what we pay for my meds. If any of you go, please contact me when you get back and tell me all about it!! I’m posting the video that the Arthritis Foundation has put out from last year’s summit.