Finally , what i have been trying to say..

Wow, this says it all.. please read and please share (thanks to http://gradstudentwithlupus.blogspot.com/2010/05/letter-to-my-loved-ones.html for sharing)


Having a chronic health condition means many things change and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic health conditions and its effects and of those that think they know - many are actually misinformed.

This is a letter which can be sent to those near and dear to us, to let them know the impact chronic pain has on our lives:

"In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit or call me on the ’phone sometimes I probably don't seem like much fun. But I'm still me - stuck inside a body which doesn’t work as it should.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for nearly 9 years now. I can't be miserable all the time - In fact, I work hard at not being miserable.

So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy! I am merely coping. I am sounding happy and trying to look normal.

Please understand that being able to eat normal food/sit down/walk sometimes doesn't necessarily mean that I can eat normal food/sit down/walk all the time. Just because I managed to eat normal food /sit down/walk yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.


Please understand that a chronic health condition is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying or even thinking; "But you did it before!" or Oh, come on, I know you can do this! If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me a lot worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct - if I was capable of doing some things, any or all of the time, don't you know that I would? I am working with my doctor and I am doing everything I can to manage the situation.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic health conditions can affect the whole body, or as in my case be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense and long. You can't always read it on my face or in my body language. Also, chronic health conditions may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to stand up/sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. A chronic health condition does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it – then so have I! In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic health condition, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic illness. If something worked, we would KNOW. It's definitely not for lack of trying.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. A chronic health condition is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to travel ... You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss although I fully intend to undertake them again, just as soon as I am able.

Thank you for listening. It really does mean a lot."

soccer and all sorts of stuff

so the girls were undefeated until last weekend... well at least that makes up our mind to attend a tourney in OC in June. if we were undefeated all season, we would have passed cause we would have had to forfeit the last game.

I am doing ok. fatigue is getting better. i finally started back on humira and i think that has made a huge difference. i am bumping up the vitamin d -- 2,000 iu is not cutting it. going up to 5000 a day for now. we will see. pain has gotten more manageable (what ever the hell that means). I am putting sure folks that don't deal with what we go through on a daily basis would be crying constantly. we learn to tolerate so much with these diseases -- auto immune. no cure, no real break through in medications in like forever and yet we learn how to manage. we rely on others. we ask others how they manage and we take their suggestions and see which works best. it would be lovely if we could pop pain killers all the time but i don't think society can handle that... high as shit all the time and working and driving. my swelling has going down a bit. still don't drink water ( i really hate that shit)-- so I am strictly a mountain dew girl. god if my doctor actually knew that i think he would slam my ass in the hospital.

the girl and hubby went to a dc united game and i am home cooling in AC and doing some cleaning... fun.
Game tomorrow @130 tomorrow... WISH ASA FREEDOM good luck!!

frustration from lack of support

i am get more and more amazed how little respect autoimmune diseases get. i mean really. most of these diseases that fall into this category are treated with chemotherapy drugs, immuno-suppressants, steroids, biologics and so many other drugs that are used to treat cancer and yet we have NO NEW advancements in MEDs in over 50 years. to say we suffer in silence is an understatement. we get the short end of the stick cause most of the time we don't look sick. but autoimmune diseases are nasty and they do kill. we need to spread the word, educate, inform, speak up and get involved. i, for one, don't want to and can't afford to wait another 50 years for a new med!! that is ridiculous. i admire what LFA and other chapters are doing and that is a great start, but so much more can be done to push Lupus and other diseases to the forefront. We need more attention in the media, we need more of a presence in the social networking aspect and we need support from lawmakers.

i am tired of not enough being done. we can and should make a difference -- our family and our future depends on it...

sad girl

today was hard for me for some reason. more so emotionally then anything else. i got over the physical pain from yesterday's very long day. i really don't like to be alone and have been that way all day. still looking for that job that will fill my time and make me happy. i guess desperate is more like it.

i have been using my time with busy work, web work, part time gig (which i really enjoy) and other stuff. days like today make me really think about my disease and how at times i realize that i still have that denial that my diseases are real or that they will disappear as quickly as they appeared. i wonder if others feel that way. when does it really sink in and how do you learn accept that? i know i have it, but emotionally it plays tricks on me. i have found some comfort from reading blogs keeping up to date and twittering. sometimes i need a real person that understands, that is going through something very similar, then I think nah...

i have kept to myself, mostly out of need to deal and cope. god knows i miss folks, but this is a dark and difficult time that is far too much.

my med regime is made up of humira, methotrexate, plaquenil, folic acid, vitamin d, ultracet and the occasional steroid and painkiller. not bad considering what other folks in my same condition could be taking.

well enough of this venting, thanks for your time :)

May is Lupus Awareness month

ok folks, it's time to become more diligent in our quest for new meds and a cure.

I encourage you to learn more and to get more involved...

http://www.lupus.org/newsite/index.html.

Take a moment visit the site and see what you can do to help me and others just like me live longer...

another weekend down

not a bad one either. we had our scrimmage yesterday and the girls did pretty good for playing against a co-ed, older team. they got the practice they needed and looked like they knew what they were doing most of the time :) they score only one goal, but my girl set up the point and was excellent in all her positions. the game were canceled today and she was disappointed. we hope to do more scrimmages as the seasons moves on.

i feel good, no major FLARES. still concerning me is the vasculitis. it is appearing in larger, more painful areas of my hands and i hope i can get it resolved soon. the tingling sensation has subsided and feel my strength and stamina returning.

i am working a couple of days this week which I am excited about, my only hope is that i line something up more substantial soon.

my lupus/ra lesson of the week... things can only get better!!!

rocky week

i kinda fell into a slump this week. still trying to figure out what the heck is going on and where i go from here. i spent a few days in bed watching re-runs of "Sex and the City" trying to make myself happy. it was fun to watch them. it also made me think of those friends in my life that i miss dearly. the daily chats, the gossip and the shopping. i seem to have become disconnected from them to a certain extent and it makes me rather sad. i know people come and go and i have usually have dealt well with that being the norm, but lately not so much. my heart aches for those folks. i get the distinct feeling that i am becoming a distant memory or that friend that they don't have much in common with anymore. the sick one. the one who generally says no to outings. the social downer. the girl who can't drink. "no fun" as some have called me. i guess i gotta hit bottom before i go back up. i do miss them. i am trying. don't give up. i can rebound, it will just take a little longer. dealing and accepting things have always been a process with me. i need and want to move on, it's just every now and again i get stuck.

i need those folks in my life more then ever - not to disappear or to leave me just because things have changed. i can't be that strong person all the time. i need to swap places every now and again.

having two autoimmune diseases has hit me pretty hard, as it would do to anyone. having two autoimmune disease and losing your insurance and job is even harder. people say they are sorry, but are they really? do they understand what an autoimmune disease even is or what it can do to your body? the pleasure of having two means not much is left to be healthy, but I try. i don't want to look sick to make folks believe that i am sick or that i am in a constant battle everyday.

i want to try and work, to make a difference and not let this take me completely out. i want my friends in my life. i want to gossip, laugh and cry over moments in our life. i don't want to feel sorry for myself over what has happened. i want to move on and get past this and be happy and content. i don't want to lose my house. i don't want to lose my dogs. i don't want to lose my husband. i want to be able give my daughter her mom back.

i feel too guys. and it hurts.

support support - everywhere

i have been a blogger for about 4 years, mostly just blogging about my life with my daughter. recently i changed my focus because i really needed an avenue to find support and to hear words of encouragement from those who suffer the same diagnosis as myself. i have been so surprised at the response and the feedback. i appreciate and have come to love seeing the comments from others dealing and living with lupus. i need it. it's not an addiction (yet) but could become one. i never thought it was necessary to talk to those who suffer the same thing - just was not my thing. i could not have been more wrong. it is important to know that i am not alone, that things do get better and to know there are folks out there i can reach out to if i need a shoulder. i am usually the one doling out advice - dogs, webs, computers and such. never have i been on the receiving end. not an easy role for me to transition into, but i am sliding in nicely.

so to those who have stopped by and offered support, words of wisdom and encouragement -- THANK YOU!!! you have made each day bearable in this tough time and just knowing that u are there makes me feel a little safer in my insane, lupus filled world.

scared?

so it's my first full day since my decision to leave my job because of my health. several peeps have called to see how i was doing. this is what i know - i don't regret what i did. i could no longer handle the stress and all the other "extras" that came along with the job. i hope i can find something that fits me and my personality. i am glad i am not crying and hurting inside. i am relieved. but in the same breath, i am scared. i am scared because i don't have anything lined up. i am afraid of my insurance situation. i have pondered how i can make my medicine stretch. i am worried my husband can't handle this on top of dealing with a wife with lupus and ra. i am terrified of letting my daughter down. i am amazed that i had enough courage to make a change and not just put up with it.

i am trying to get my sense of self back. i lost myself over these past couple of months - no backbone, no self worth and constantly taking so much shit. it was (is) like i have been stuck on pause. i would like to hit the play button now and catch up. i would like to stop second guessing me and what i can do.

any suggestions?

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.