I get by with a little help from my friends..

Hi everyone -- we need your help!! take a few minutes to read the information below and please commit a few minutes of your time to get the word out and help:

March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus.

• Call your Representative and Senators and tell them to provide more funding for lupus research. To find your Senators and Representative, go to http://www.capwiz.com/lfa and click on the link "Call your Members of Congress Tuesday, March 3rd!" Then you will enter your zip code, and get the contact info for your senators and representative.
  
• Send an e-card. Raise awareness about lupus and the need for new treatments by sending your friends and family an e-card. Go here to send an e-card.
  
• Donate. With your donation we can continue to fund cutting-edge lupus research. Go here to make a donation.

Facebook
There is one very simple thing you can do in Facebook. Below is suggested text that you can use for your status on your Facebook account for Tuesday, March 3, 2009. Encourage your family and friends to change their statuses as well.

"YOUR NAME is encouraging friends and family to support the LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long http://www.capwiz.com/lfa"

Twitter
If you have a Twitter account and are joining us for Advocacy Day, you can "tweet" your Advocacy Day experience. You might want to post updates such as "Heading to Capitol Hill now" or "Meeting with Senator Young."

If you’re not able to be on Capitol Hill, you can still use your Twitter account to encourage people to call their Senators and Representatives, and raise awareness about the need for new, safe, tolerable, and effective treatments. Below are some suggested "tweets."

"Support LFA’s Advocacy Day tomorrow. Tell Congress 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa"

"Join me and call Congress and tell them 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa"

hmmmm

so i am having an ok day. i feel pretty good. i did not stay in bed today, but i did not venture out the door. yesterday was busy with the doctor and getting some meds and running some errands. my doctor is really concerned about my stress and how i can rectify that situation. i am concerned too. i need to find a happy ground and someting i love to do. not being in that situation is making it hard for me to get better and move forward.

oh well enough of that for one day..

a new week

so monday and i made it thru and overnight and an all day event. i am tired from standing, but not too bad since I ate three good meals today. i can't remember the last time i actually ate more then one meal in a day. and i actually survived without a mountain dew. started some calcium supps today (based on hopkins recommendation) and am ready for yet another visit to the doctor tomorrow. my plan is to push for the recommedations from hopkins and try and move forward from the pain and confusion. it kinda reminds of swimming and doing a flip turn -- heading into the final lap. i need to push off really hard and commit to winning this -- i can see my self winning now, i just have to make it happen. yes, i was a swimmer and a damn good one -- broke records. so now i must focus...

ok

so I have been ok. Saturday was the best day. I started the vitamin d. took a few naps and did a few errands. I am on my way down to baltimore for an event, pretty sure I can make it through the day, but I am also pretty sure it will kick my ass for a couple after that.

my daughter is have sleep over since at a friends and they will take her to school and mike is going to take me down to baltimore so I don't have to drive.

ha.. another call from doctor

my vitamin d level was low (way) still or again is the question. so I have to add another pill to the arsenal. i feel ok. my mood seems a little less severe. my friend mentioned that vitamin d def can cause depression or change your mood, so maybe this will help. my inlaws brought me dinner tonight!! that is such a blessing!! i could get spoiled! well at least it is friday.

trying

so today will be the first back to work in two weeks. i hope I can make it through the day. i had a long, heart to heart talk with my boss last night about where I am in most of my life. it's not the best place to be, but I gotta take one step forward. here's to a new day...

popping positive

so after 17 vials of blood, i got the call this morning that some of the lupus test popped positive. which ones? they did not leave that on the message. i am feeling ok, still down. waiting still for meds to be called in. can someone please understand that i would like to get the ball rolling and start to feel better soon? jeez, all this bullshit about who and what it does is severely pissing me off and the thought of work is killing me. oy vey ---

gray matters

i have learned throughout my life that things are not black and white. i learned that with my dogs and their cancer. i learned that when my friends and family that passed away. i learned that when i struggled to conceive my daughter. this gray area has been a constant in my life for a long time, and right now it is killing me. this gray area. this area where i don't understand why i feel so helpless, so sad and can't go forward. this gray area. this time i can't grasp what is wrong with me and why the doctors can't put a label on it. this gray area. the place where meds either help me or hurt me. this gray area. my illness is stopping/hindering my ability to stay gainfully employed. this gray area is where i live right now. no black and white. just gray. so at this point in my life, gray matters, cause that is the only thing that is real for me right now.

every day brings new challenges

so I had my brain mri and mra. all I can say is that I don't want to ever do that again. yesterday was tough, had no energy or motivation. I still know i am skirting with severe depression over how things have played out lately. I am trying to get that positive attitude that has carried me for so many years. I am also looking to the lupus community to help me get through and move forward.

so the visit JH was interesting. they believe I only have lupus and not RA and that the humira that i have been taking for so many years has caused some damage. they hope to get me on a regular dose of metho and the plaquenil. my only irritation is that my doctor (ra) has not called me back so I can start. that is irritating. I am thinking i am going to email the new doctor and ask if she can call it in and she can recommend a new doctor. I want to start moving forward and getting the best possible care so my mind and emotional well being does not splinter any more. that word has lived in my head for the past few weeks, SPLINTERED. that is how my mind and my body feels.

I am so glad I found a few blogs about there and a new friend at LFA to reach out to when I need to talk. i did get a new book about coping -- so hopefully that will help. financial issues weigh heavily on my mind and I hope we can find some resolutions soon.

a new day

and with a small seed of hope planted from yesterday, I must move on. i must try to move forward.

I just watched this video

at http://lfa-inc.blogspot.com/ that made me feel sad and connected. I am not the only one who is going through this and feel this way.

what a day @ hopkins

i am exhausted, many things swirling in my head. so much to digest. but one thing I know for sure, I do see a faint light in the distance. I am really tired from 17 vials of blood being drawn. tomorrow some brain scans and xrays. More bed rest for me is needed. so hopefully we are on the right road. I will fill in the blanks tomorrow. night night

one more day

and I go to hopkins. I am beginning to think I am putting to much hope on this visit. the pain has not subsided and I am soooo tired. my dogs have been snuggling in bed with me and it makes me sad to know they know I am not doing well. I am glad a good friend is taking me tomorrow so I don't have to be alone. I am so glad she has called me and talked with me. I have not eaten much in the last couple of days because i just can't bring myself to eat -- my appetite is shot. I did finally reach out to the lupus foundation to find some support and possibly an opportunity to talk with someone who understands what I am going through.
frustrations are still there, but the crying has diminished(for now).

more later

tough tough days

wow, can't believe I have been in bed for 4 days with little relief. my arms and elbows are so painful. I am not sure if the crying is from the extreme pain or just from being overwhelmed. I have been thinking so much about what went wrong, how did things get so bad? I have no clear cut answers, just theories. No insurance played a huge factor, then add a HUGE heaping of stress and denial. I have tried so hard to act like I had my disease in check and I was fine. These last four months have been a lie to myself and my family. The steroids, methotrexate, plaquenil, folic acid, pain killers, motrin and humira have done very little to calm the physical complaints. I am lacking the emotional support and understanding from people that know what I am going through cause they are going through the same thing. Don't get me wrong, I have a great family (they are trying desparetly trying to understand what happened latley and why I have fallen apart), friends that wanna push me to stay strong and help me go forward. I tried to work an adjusted schedule while all this is going on with little success. I should have known when my doctor asked if I could handle it, he was telling me I was doing more harm then good. I am so excited about Hopkins, but in the same breath afraid they won't have many options.

I am tired of not being able to blow dry my hair, put on certain clothes, brush my teeth and drive without pain. This last week proved to be too much for me -- pushing, pushing pushing forward like NOTHING was wrong. Convincing myself that i could make it three days and then collapse, get meds and try all over again. how many folks do you know that can go through all those meds and not falter? I tried to be that one who did not. I beat myself up daily because I see myself as a failure and a wimp. It's called denial and it can be devastating. emtionally it can rip you to shreds. And that my folks is where I stand today - this minute - devasted, shredded and not able to deal with much. how sad.

not doing well

these last few days have tested my sanity and my emotional well being. i can barely pick things up, the pain is my arms has increased two fold and i am loosing my strength. i am beginning to think i can't work, it is just too much of a strain and I am not able to do simple things for a long period of time. I guess the doctors and I can make that decision. my mind can't handle the stress any longer

paperwork

so the paperwork came today for my visit to hopkins next week. WOW. 14 pages to cover what you have been going through. it made me rather depressed to write down everything, check off more yeses then noes. irked me that I had to write with my hands feeling the way they do. happy cause it is real now. bothered that I have to be there an hour before my appt. curious about what they are going to do to me. AMAZED at what they charge for this one visit (447.00) and that does not include lab test. shocked that they send this paper work out over and over again with all the errors in it. miffed about the cancellation policy (miss three appointments and you are not welcome back to the clinic), mad that i have to go through this all over again. tired that I just went through all those emotions in a few hours. done and done.

finally

after a few strange calls and a few appts made with different doctors, I finally got my appt with the head of the Lupus Center at Hopkins for next week. I am relieved and not sure what to expect. but it is made and we are good to go for now. i hope to get some rest today and this weekend. I am worn down and my hands and arms are bothering me. I have one more call to make about my appt (just sure all the paper work is in place) and then all I have to do is wait for the paperwork to come in the mail and just go to hopkins. is that a light i see way way out there?

february already

and I just had my shot (HUMIRA)! I did not get home until after 7 and had to wash the dogs ( got sick in kennel), take trash out, clean floors and kennels and then make dinner. Mike helped. Got home so late, that my good friend Joe and Jen took hannah to dinner. Still no work from hopkins. going to call my doc tomorrow to see what is going on. I go to the doctors this week, hopefully another shot is in order and I can feel better. I think i am going to go out of town after that for a break. I need it.