Living with RA and Lupus

moving to wordpress

2010-06-24T13:38:00.002-04:00

just wanted something different and I have been debating for a while ...

check it out...

http://yellowlablovers.wordpress.com/

uggh

2010-06-15T15:35:00.002-04:00

ha, hate that uggh is my title, but that is my feeling. after a long week and tough weekend, i think i am starting to come out of my funk. the news from the doctor wasn't the worst, but it wasn't the best. the thing on my leg is just another confirmation that yes, i have lupus and nothing can help ya. fab right? i need to readjust my attitude and it amazes me that i let that bother me so much when hear another thing has popped up. But i do and it is not the best thing for me and managing my stress.

started taking ultracet again -- hoping that will help me manage the pain better daily.

my daughter finished school today __ yeah! her birthday is next monday, so many things to celebrate.

Ridin Solo

2010-06-04T16:26:00.003-04:00

ha.. just for this weekend. The girl and hubby have a sand soccer tourney this weekend in OC and I can't go.. .the dogs restrict family travel to almost nothing. That is ok, I ended up having a biopsy on my leg yesterday and would rather give the leg some rest. they started me on steroids (20 mg per day) until they can figure out what is going on. love steriods for a very short time. they make you feel AMAZING, but man they also make you pee all the time, sweat and very hungry. Being hungry is odd for me right now, I haven't really been eating. I get like that, I am not sure if it is the diseases or what, but trust me folks I have enough fat to live off of for a while :) Eventually just drinking mountain dew will catch up again to me and it will be ugly.
Been a little busy lately, work work work, soccer, and my lovely daughter. I am planning an end of season soccer party for 16 girls and their families. I am stuck on what I should get them for their end of year gifts. I am currently fighting with my ipod, now that my daughter has one and she syncs with me, it had messed me up. some of the crap she buys I do NOT want on my play list.

My boys have been great, they are such lovely creatures. They really have adapted to me and my personalities and my ups and downs. I spend more time with them then anyone -- the girl has school, the boy works all the time and has soccer.

I could complain about my illness right now and all the limitations and issues that I go through on a daily bases, but I will pass on that and save my energy for something more productive. Smile folks, take it minute by minute and enjoy it while you have it... MUAH!!

Finally , what i have been trying to say..

2010-05-20T22:59:00.003-04:00

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."

Dog Days

2010-05-14T17:47:00.002-04:00

Yes, most days I feel like my Diesel looks in the picture... tired. I mean his face really says it all. Love my doggies. Strange couple of days for me. Little depressed to say the least. no motivation. I kinda hoped that would be rectified when my vitamin d dose was upped, no such luck (yet). No doctor visit until June. I am honestly not in the mood for all the shit that goes with going to the doctor. and getting back on all the meds. too much.

If isn't enough that you have to do all this crap and deal with NO energy.. they want you to fill out all this paperwork, take all these additional tests and make all these phone calls. How many pieces of paper do you actually need to tell these folks -- yes I have Lupus, Yes, I have Rheumatoid Arthritis. No, I would not like it to progress any further. No I would not like to fill out any more paperwork to tell you want you already know... damnit. Bother the damn doctor's office who has all the paperwork, the paid staff to do it and the reason I have go through all of this... shitty shit shit shit.
I just wanna take the damn medicine and be done with it. if I have TB, it's all your fault any way and the damn meds you put me on... could I get a little more fouler... sure you betcha!!

Join us why don't you...

2010-05-02T17:16:00.003-04:00

Help us raise awareness for suffering from autoimmue arthritis:

Autoimmune arthritis sufferers have been asking for an awareness bracelet for long enough...now they are here! Official silicone awareness bracelets, which are packaged with a Message about standing up for this cause (message below). Place a preorder for the 1st batch of autoimmune arthritis awareness bracelets by visiting the Facebook "event" page link below, agree to participate, then go to www.BuckleMeUpMovement.com and place your order. The deadline is May 8th, don't miss out on purchasing your piece of history!

The link to the Facebook Event is here:

http://www.facebook.com/event.php?eid=118702491481380&index=1

Here is the Message packaged with each bracelet:

"I Am...

A Leader for Change,

Hopeful,

A Believer in Progress,

And Rebranding Stereotypes.

I Am an Advocate for

Autoimmune Arthritis Awareness."

soccer and all sorts of stuff

2010-05-01T18:26:00.004-04:00

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!!

Man, I have been beat up

2010-04-18T10:16:00.004-04:00

by this lupus shit. The fatigue lately has been crippling. Very little movement and a lot of pain. I am trying very hard not to cry all the time from the fatigue and the pain. It seems no amount of sleep can refresh me from this drugged out feeling. On top of that the pollen in MD has been so bad I can't stop sneezing.

I can only manage to go to work on my days on and my days off I can only make it to the couch. Tough week. I am hoping this is a minor blip on the screen and that it will pass. I have my list for the doctors and only hope he does not think I am insane... which I am not.

I have a soccer game today for the girl and it is taking me every ounce of my strength to consider dressing... how sad is that. I can't even muster the energy to get dressed. I am sure that I am so angry at this disease that is is also sapping what little energy I have left. As I sit here and type, I have my eyes closed hoping that this will pass and it is all a dream. Or a nightmare.

I am just beginning some volunteer work for http://bucklemeupmovement.com/ -- I am excited!! Check it out.. we need some more lupus or RA blog leaders!!

where does the time go

2010-04-10T20:10:00.003-04:00

still amazes me how fast time flies. this week was good. i had the pleasure of staying in baltimore for two days on federal hill. the place i stayed was right across the street from the science museum and the harbor. so when I walked out side on the deck, the whole harbor was right in front of me. amazing view. i attended a seminar at CVCEast for a vet neurologist i work with, who is in the process of opening a stand alone clinic in towson and annapolis. he says he has big plans and I told him he has to make me legitimate soon. great guy to work with, only one better and that was my old boss David. Jay knows what he wants and goes after it and is a great, great vet!! he was my vet neurologist 6 years ago with my boy Bailey. I look forward to the day when i get to work with him daily and not just via email and our bi-weekly chance meetings. i look forward to letting go of my mgmt position at the Loft and just doing one or two days a week there. I know many people folks have told me be careful what you wish for, but I do believe it is my time for good fortune and a good job.

A few disease complaints (i know, where would I be with out it)-- my leg is getting worse, my pain meds were upped this week and I think i will have to go back on some TNF blocker and not go with out like they hoped. I just have TOOO many joint issues that have not been present for a LONG time. I am tired of wearing LIDOCAINE patches on my wrist to work everyday and limping all evening. i am so glad i have vicodin.. .it does help when needed.

Soccer is in full swing and it is so good to see the girls again, a few new and A LOT old. I don't miss the old assistant coach and love the fact that we have a volunteer trainer helping out with the girls. it has made a difference. they really like the fact that he is only 19 and remember that it is a all girl soccer team (ages 10-13).

my boys make me smile everyday-- they are finally maturing and understanding their place, though one SLOWER then the other, but we are finally agreeing on how things are to be done. and well, mike helps me with them some of the time :)

well that is it, except I had my first weekend off in I don't know how long and I can't tell you how much I enjoyed every minute and wish i could do it more often.

A chip in the surface

2010-04-04T17:33:00.002-04:00

Well i finally got some of my results back and it seems I have made some head way with my severe Vitamin D deficiency--but the thing that cracked me up is that the nurse wrote on the results _ doable -- get some sun. Um, hello, I have lupus and can't go in the sun. could you take a minute and read my file before you offer advice. Thanks

I am a little irritated that she did not run my normal labs -- with my ANA -- so that means I will request that when I go back. Also a new abnormality showed up -- my glucose was elevated. What the hell is that about? I guess I will wait and see in a few weeks.

I had a few rough days -- very tired and sore. My legs, knees, arms and feet all very painful. I had to work 6 days in a row which does not help me at all. I have also learned not to work more then 6 hours at a time (my job requires me to be on my feet all the time) or I will suffer. And I am now. My other gig requires me to work on the computer and to become stiff -- go figure. Shit, no win.

I was craving wine the other day and did not get any.. made me sad (random thought I know)

My daughter is back home after being gone for a week and I am glad to have her back at home. She has done well lately -- honor roll, NJHS, winning her first soccer game and helping me more.

My lovely husband just came back from grocery shopping and even got me a movie. love love love that man. even though he forgot my wine :)

Well I finally went

2010-03-26T19:09:00.002-04:00

back to the doctors and it went pretty good considering. They thought I had developed a dvt and i was a little nervous, but after a quick sonogram, all that was put to rest. It seems that my lupus is making a return appearance from it's rest. The issue with my skin is the lupus and the pain in my legs is lupus. So they wanted to give me a mega dose of MTX and do a bunch of labs, which was good because it has been a while and I really wanted to know (out of all things) my Vitamin D level - it has been so low and I wanted to see if I made any progress. They did find protein in my urine which we all know what that indicates :( But I am going to hold out for all my blood work before I get myself depressed -- again.
I think when I go back we will decide if I will stay on Humira or maybe move onto something else. I am hesitant because in my mind it has work, but I am not so sure if it helping all the lovely lupus stuff.
So that it as far as an update... i feel good that I went and I can check that off my list. Stay tune for the results.. it could get ugly!!

Damnit, I missed advocacy day -- LUPUS

2010-03-16T18:19:00.002-04:00

Things are crazy this week. Too many things going on to keep up with everything i would normally do. I feel bad. I am all about getting the word out more about Lupus and other autoimmune and I failed today miserably. But I have been around long enough to know that while one day can make it difference, it is more about what you do to make folks aware every day.

I have met a great group of folks on twitter and the "buckle me up international auto immune arthritis movement -- and it has been very lovely to wake up every morning to be greeted by them, hugged by them and supported by them. I can't tell you enough how much a difference it has made on me personally to connect with those who suffer the same shitty rx as I do. Stress and depression can reek serious havoc on our diseases and just having that support group out there makes it more manageable - tolerable. Makes me feel less alone.

I encourage those who suffer from any disease to reach out to a support group - - create your own on twitter, find a org that can connect you with folks or just create on your self. My personal favs are http://lfa-inc.blogspot.com and http://bucklemeupmovement.com/
it's good to know you got a friend out there who can help :) Cheers!

Constant Turmoil

2010-02-19T18:09:00.002-05:00

So I think we made it thru the 60 inches of snow... not with out a fall or two by me. That really hurt.

I am having a little problem ( my constant turmoil) -- most of medications are immune suppressant drugs and so when I get the slightest cut it is like playing Russian roulette to take my medications. I have had sooooo many staph infections, strep and infections in my lymph nodes in my head in neck from playing this game. The problem is that if I go to long without my meds, thing start spiraling out of control. Last time I developed the worst case of vasculitis and it took soo long and so much medication to get back on track. Right now I have what appears (yeah, not 100% sure) to be a patch of eczema on my leg and yes I keep scratching it (regardless the fact i have put anti-itch cream on it every day) and now it is an open wound. So i have been with out certain meds for a while and so some lupus issues are popping up .. more skin related then anything but man it gets me worried. So I have been keeping up with my Plaquenil, folic acid, vitamin d, benedryl (I break out in hives like you would not believe) but I am behind on MTX and Humira. My pain meds are taken as needed, but has not effect on my immune system so I don't count them.

What's a girl to do except live in constant turmoil.... damnit

pounded

2010-02-06T15:30:00.002-05:00

Ok, so snow is one thing but this is brutal. I would say we have 25+ inches and it looks like we are getting to the end with one more possible heavy snow band left. the dogs are not able to go out into the snow, we have dug pathways to go only so far and it is driving them crazy. We have been out side SEVERAL times to dig and it just seems like a losing battle. our street has disappeared and well so has my car. the neighbors have a snow blower and we have been working with them to help folks out.

my body is killing me but i gotta push through to make sure we can get out in a few days. i am pretty sure I won't be able to get out tomorrow at all.

snow

2010-02-02T16:23:00.002-05:00

wow, more snow. i have always loved snow and lots of it, i just don't drive well in it (hey, at least i can admit to that). but man, these last few weeks we are getting a decent amount. to bad i can't play like i used to, but man i love to go outside and sit and watch nature. it's so peaceful. so it looks like we will get 3-6 more tonight and another wallop this weekend.

another reason i love the snow is watching the dogs playing and rough housing in it. they become INSANE and it wears them out. diesel loves to try and catch snow balls and then goes insane trying to figure out where it went... after he has dropped it. ripley loves to dig into the snow to look for god know what... he is a little odd that one. zoe loves to herd them in the snow, but when it gets too deep, she won't leave the deck. smart girl.

i finally broke down and got the girl a cell phone and i have to say it is driving me crazy. she is texting all the time and i need to figure out some rules and boundaries otherwise that is all she will be doing.

my ra and lupus suffer in this kind of weather as well.. with RA -- i become stuck and can't move because there is no where to go -- my joints suffer tremendously! i need to keep constantly moving otherwise ... stuck

ra and lupus

2010-01-27T09:36:00.003-05:00

there are days where i can not decipher what is bothering me more and I get that question a lot. not much i can do about that. i just know when it hurts and when i can't be me. more people are "aware" of lupus then rheumatoid arthritis and that is why i was excited to hear about a new non profit ..The "Buckle Me Up!" International Autoimmune Arthritis Movement. More folks need to understand and those affected need the support.

Take a moment to check it out --

another step

2010-01-22T17:28:00.002-05:00

one thing we learning living with a disease is our limitations. we struggle daily with what we can do, what we want to do and what we used to do. one thing that has KILLED my spirit is getting my hair done and making sure it was always on. i just can't do that anymore. so i have gone back to my original color (or a close variation because to tell you the truth it has been so long since I have seen it, i am not clear on what that color is except brownish) and I don't get it cut that often. but today i went on a spur of the moment (thank goodness) because the longer it gets the harder it is to do because i can't hold the blow dryer or brush on some days. so i made it in -- got like 4 inches cut and i feel like a new women. and 5 lbs lighter. i have a lot of hair. whew and the meds kill it or make it freaky. anyway.. the simple things.. wow, make this girl happy.

tough week for my daughter. she is just on an emotional roller coaster. so many things have changed in her life -- school, her body and her mom. this week it could have been so good (she was nominated by her science teacher for an american scholar award and finally got that A in algebra) but those other things just killed it - -friends are hard because she is changing faster then them, homework is A LOT and mom is always tired. things we take day by day. she is going to spend a few days with her aunt (my favorite aunt) to get away from it all and just have fun.

the boys are boys -- still spoiled but a major need in my life -- the perfect compliment to my life as it is today.

cheers!

weather changes

2010-01-15T15:33:00.003-05:00

whew... these weather changes can be deadly. one minute it is 19 degrees and the next it is almost 60. that is a lot for one to deal with.

today was good -- only one issue and that was the puppies. they have no respect for me (which is werid) and I think that has a lot to do withmy conditions. they know i am the weak one. well anyway, they get SO FIRED up when it is time to go out and they beat the shit out of the little girl that i have to get involved. the big boy, ripley loves to jump up and down on her back (she is a pembroke welsh corgi) and he is a 95++ lbs yellow lab-- well today he cam down on my hand and dug in. OUCH. i just kept yelling at them saying "are you happy now that i am bleeding?" they did not care, they were hauling ass around the yard trying to keep pace. dogs, i love them.

there have been a lot of changes as well for my little girl. well not so little anymore. she is changing every day, growing up and learning to deal with the emotions of her flakey ass friends and her own emotions. my gray hair is making a MASSIVE takeover. everyday it is something new -- she won't talk to me, she this, she that, someone threw a pencil at me, middle school is hard, i had to learn about boy parts today and that made me uncomfortable. yes, all this flies out of her mouth. she asked about binging and purging yesterday because of health class -- UUGGHHH!!! 6th grade can not get over fast enough!

anyway, just wanted to post since i have been so lazy about it... that's me today and that is what the picture represents!!

managing

2010-01-14T18:43:00.002-05:00

so i have hesitated to write since health wise -- things are going well. a few hiccups here and there but nothing what i went through last year. i can honestly say i am stable. less days of insane madness more of what can i do to move on. i have taken on more projects and really would like to get back up on the horse again. i am just not sure how to do that. confidence is a little shaky.

i have learned that i hate my brown hair, but i have to live with it. i learned that i can stand up for myself and yell back. i have learned that people do treat you different once they find out that you have lupus.

i hope that i stay on course and the next time i write it will be even better news... job wise. here's to my health status ... i so deserve this break..

where did oct and nov go

2009-11-17T16:23:00.003-05:00

me thinks i have a little whip lash from that. things been ok. i think my body is wearing down from the job. it can been really physical and on my feet all day and it just does not do this body good at all. i can never tell if is the lupus or the ra, but it hurts and it does not go away. it beats me down like a drum. constantly reminding me that yes, i have limitations and i am not adhering to the plan. don't have many choices in that realm. need a job. need a better job. need a better body. all dreams that seem so far away. i live thinking about the past and what did i do to deserve this, i will easily admit i was no angel but don't think i deserve this sentence.

i am a little down right now and having a hard time keeping it together, not sure what path to go on or how to ease the pain or the LOUD banging that is going on. decisions are limited and not the most ideal. but i have to do something soon or I will lose more then my sanity.

ok.. that's it for now. off to see a friend and hopefully i can keep it together because i don't talk about all this with anyone.

emotional rollercoaster

2009-10-06T18:01:00.003-04:00

so these last SEVERAL days have been hard for me (as you can read). the health thing seems to be coming in to full view again and can't seem to recover. i try and try, but the stress from things happening at work are making that option seem impossible. I am not perfect by any means, but I do try and try really hard to make things work and make folks happy. but i have found myself in a situation that is almost impossible and i really don't have the energy or the right frame of mind to play those games. i am not good at letting others fail. because it my mind, i fail. i am trying to step back and let things happen and let the chips fall where they may, but it is hard. the emotional roller coaster is killing my insides and making my lovely disease wake up from its slumber. you see, stress is not good for anyone. but add a few autoimmune diseases to the mix and you are headed for trouble. and yet i know this and can't get out of the way. work is work. i was so loving my new work. i was so loving my new mentor. i was so on my way. and now i am not so sure about the new dynamics at work and how i will survive it. i am no longer that optimistic girl from earlier in my blog (years ago) after what i have seen and felt what this shit can do to me and others.

i still know i am good at my job, but i am not sure i will survive it. sad

fatigue

2009-10-03T14:33:00.002-04:00

who would ever thought that little word could be so devastating. i have struggled with this symptom for many years, some days much better then others. i try many things to combat it from folic acid and vitamins to the not so conventional use of mountain dew. it is very hard not to get sucked into the fatigue. there are days where i can literally sleep on and off all day and night and feel like i am dying. there are days where i can forget that i am even bothered with it. but those days where it sucks me in, it kills my spirit, my will and my wants. nothing can be done to push those days away. i have NO choice but to give in. this makes me incrediably sad and hurt.

i just feel like giving in on those days and it is hard to convince myself otherwise. it's rough, debilitating and chronic. it is hard to convey what it feels like or even compare it to something.

i am tired... plain and simple.

Stolen thoughts

2009-09-22T18:59:00.002-04:00

So i took this from a fellow lupus blogger -- but have changed the responses :)

1. The illness I live with is: Systemic Lupus. I also have Rheumatoid Arthritis, Reynauds Syndrome, Vascilitis

2. The year I was diagnosed was: 2001.

3. I had symptoms since: since I was diagnosed with Lyme's disease, I never recovered.

4. The biggest adjustment I’ve had to make is: dealing with life minute by minute and try to enjoy each moment.

5. Most people assume: there is nothing wrong with me cause i don't look sick

6. The hardest part about mornings are: Continuing to move forward, hoping I can make it.

7. My favorite TV medical show is: House, for obvious reasons

8. A gadget I couldn’t live without is: no gadgets, but my dogs --

9. The hardest part about nights are: wondering if i can make it thru the night without pain, restlessness and thinking about tomorrow

10. Each day I take: the minimum 8 pills ( and that is a good day) with my Mountain Dew. Every Monday, I take my MTX injection and every other tuesday I take Humira injection

11. Regarding alternative treatments, I: don't bother.

12. If I had to choose between an invisible illness and a visible illness, I: um, neither, they both suck.

13. Regarding working and career: i am proving to myself that i can work -- that is one of the hardest, most painful adjustments I have had to emotionally deal with.

14. People would be surprised to know: that i gave up coloring my hair because of my disease-- and it takes so much energy to get up and move every day.

15. The hardest thing to accept about my new reality is: i will never get better.

16. Something that I never thought I could do with my illness that I did: have a life.

17. The commercials about my illness: are cheesy.

18. Something I really miss doing before I was diagnosed is: walking everywhere.

19. It was really hard to give up: my career.

20. A new hobby I have taken up since my diagnosis is: helping others cope

21. If I could have one day of feeling normal again, I would: taking a long walk with my daughter, husband and doggies.

22. My illness has taught me: patience and understanding

23. Want to know a secret? One thing that people say that gets under my skin is: You can't be sick or Oh I am sorry, yeah.. one of my friend's mother has lupus but she is much older. UGGGHHHHHH

24. But I love it when people: email me, call me, help me and make me giggle.

25. My favorite motto, scripture, or quote that gets me through tough times is: "There are other folks out there that have it much worse then I do."

26. When someone is diagnosed I like to tell them: Ask more questions, become more educated and don't give up.

27. Something that has surprised me about living with an illness is: how little folks know about lupus, understand and accept the new me.

28. The nicest thing someone has done for me when I wasn’t feeling well was: My friends and family have been good to me..

i feel good

2009-09-02T15:41:00.003-04:00

but my daughter on the other hand is not. she is already over 6th grade. the past two days have been very emotional, so much so that she can't even put in to words. the only thing i get is that it is too much.

with that i say: Can I got back to that time? well, not the 6th grade. in terms of school, that was the worst time in my life. i got really sick and missed over 6 weeks of school and the doctors thought (yes people, I have had my share) I had leukemia. well it turned out to be a really bad case of mono. talk about crappy year. any way, it does break my heart as a mom to hear that, but the former student in me says -- buck up little camper, this is the easy part. so as a mom and a former student, I have to find the medium. I have told her to talk to me and let me know what I can do to make it better. no luck. this is a hard ass age. hormones all out of whack.

soccer season has begun and man this stuff keeps me busy. the coaches and everyone else has a good time while i do all the paperwork, the uniforms, the sponsorhips, the shedules, the emails, the snacks... oy!!

well my health seems to be coasting. minor little hiccups here and there, but no major flares. amen, lupus is a tricky disease and stress can send it into overdrive. don't need that....

i really wish folks would get off their ass and find a new treatment...

Can you believe it?

2009-08-24T15:53:00.004-04:00

the first day of school for my girl -- well middle school that is!
She also started riding the bus for the first time. and here is the exciting part, two of her classes she will be blogging. i almost feel like she is an expert of this because of me and starting out blogging almost 5 years ago. she followed the blog because it was mostly about her and life with hannah. i am excited for her. and well, maybe a little for me as well. another avenue for me to go on and on about. ha. she has a full schedule, a couple advanced classes and a few regular. now let's not forget her electives. my confusion is how she got percussion and did not pick that. bleck!

i have decided to keep forging on ward in my new career. i am going for co-manager. this is my new goal for the next few months. i need to keep my head down and focused. but i am pretty sure i can do it.

some comfort

2009-08-16T12:38:00.005-04:00

whew, what a rough few days. my legs have been feeling like lead and very painful and hot. i have done my best to push through it and continue thru my every day routine, including working. I had to change and work early yesterday and was sooooo happy to have the rest of the day with my family and today as well.

the comfort is not letting this minor flare ups get to me and still live each minute and do every day things like cutting the grass, weeding the garden, grocery shop and laundry. yes, they are very routine for most folks but very hard for me to do on a regular basis. but i refused to give in yesterday and did all that and worked a shift. amen.

another comfort of mine is football. i am sooo glad that it has started up again. i was very jealous this week when my husband attended the ravens/redskins game and i did not. any live football game is such a treat. hopefully we will be attending some redskins games this year as part of the fundraising job for our soccer team. yes, we get to work games and earn money for our team. and just to stress to you again, the best part is we get to see a live football game.

the girl starts school in one week. this year she is in middle school and she will be taking the bus. wow, changes. we just picked up her MSA school and she did extremely well!! but then again she always does well.

and finally soccer -- i began my duties as team manager and created a group on google for all the parents so the communication piece will be easier this time. the hardest part about the beg. of a season is the chaos about new players -- and the league not having the best organizational skills. but it will all work out. we only have two players that are questionable and if they choose not to play, we have three other girls that would like to join the team.

ah, yes and finally the boys. they are doing great. diesel was sick a few weeks ago and had to have iv subq and lots of meds. he even had chicken and rice for about 5 days for every meal. that was a chore to ensure there was enough rice and chicken for his normal meal. I had to cook 10 chicken breasts and about 6 cups of rice. but he is all better now. ripley is doing well. big as every and still very talkative. if he does not like something, he will let you know. he and zoe love to beat the crap out of each other. i still can't believe zoe will be 9 in a few months. she is very cranky and very bitter, but we love her contrary to the constant complaining about her yapping and attacking my boys. diesel will turn 4 on sept 1st and ripley will be 3 in early november.

oh, my meds are still working (most of the time) and still am hopeful that this continue to get better.

adios

WE NEED YOUR HELP

2009-08-12T09:41:00.000-04:00

Lupus Foundation of America Needs Your Help -- Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

Go to http://capwiz.com/lfa/home/

Click on the link "Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act," enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

Please ask your family, friends and coworkers to call on your behalf as well!

missing

2009-08-11T15:13:00.002-04:00

so i have had a lot of time to reflect. these past 10 months has brought massive changes that have been life altering.

yes, of course i miss the money-- more so being able to do for my family and not have too many restrictions. i miss those morning talks at work. i miss those friends at work that made me laugh and calmed me when i was out of my mind. but things happen for a reason. things i can not change. this is my reality. this is my life now. and for the moment, i have a different career that i enjoy and would like to go farther up the ladder. learning, meeting, helping and taking pride. i have to push my self every day but that is ok with me. what my life is now is real. painful but purposeful. slow but necessary. different but refreshing.

now don't get me wrong, this has been the scariest journey i have ever taken. i cry a lot, i worry all the time - but that is part of life. i am learning to appreciate the little things and miss those who i took for granted. i am not happy that i have these problems, but i am glad i have a chance to make a difference, stop and smell the roses and try things i would not have ever done. i finally have some optimism about moving forward and finding all the things that make me happy. finally.. .wow-- that feels good.

ignorance is bliss

2009-08-03T18:44:00.002-04:00

somedays i play that card better then others. mentally - any disease can take you down and make it impossible to get back up, then you have to deal with the financial blows that having a disease can cause. i try so hard to remain neutral to the whole ordeal and remain positive that things will eventually work out. today it kinda hit me like a brick wall. ok, more like a mack truck. i really do have to find a full time job and get things back on track some what.

that whole mess scares me. my ego took some huge hits with my last jobs. but i must get past that and move on, and i have to say that has been the hardest. opportunity would be nice. options would be nice. i am so tired of worrying. no amount of vitamin d or painkillers can take away that pain or guilt. i wish i did not have to worry so much and focus on important things: like living life to the fullest.

any suggestions might do me good.

finally some good new on the lupus med front

2009-07-21T15:38:00.002-04:00

so i was glad to read on the lfa blog this great announcement - First Potential Lupus-Specific Treatment in Sight-- you can read the full announcement here --

i am excited about the possibilities!!

working a lot and that is good for my mobility. i missed my shot last night and will hope to get it in tonight. gotta go back to work

the girl is back and chilaxin (her word, not mine).

she will start participating in some pick up soccer games tomorrow night to get her back on track.

well time to find something to eat!

lost a day

2009-07-13T07:53:00.002-04:00

yesterday was a rough one. i think the sun exposure and working caught up with me and I was down for the count. I did not really move until 6 in the evening and that was very limited. that makes me sad cause i really wanted to go to the pool and hang out with friends.

it is hard on those days not to get depressed and remain positive. i struggle with that constantly. i make every effort to push forward, but days like those get me stuck.

good news, hannah is coming home and i got a promotion at work. i hope i can keep up with that cause i enjoy it even though it is hard on my lupus and ra.

well, here goes another week.

ahh jeez

2009-07-09T14:22:00.002-04:00

so i did not start my week off well, i could not take my scheduled injections b/c i was not feeling well and i did not want to risk it so i think i am going to shoot for today. the pain behind my knees are doing much better. i am having issues with my hands -- grasping and opening items. sad-- 38 years old and have issues of a much older person.

still no real luck with the job of my dreams, but still working to prove i can do it. that i can still hang with the best of them. i must keep this positive attitude to maintain my disease otherwise it all crumbles.

we have had "visitors" in the yard the past couple of weeks, several that are fine and one that caused me major distress. you guessed it a snake was taking up residence in our side yard and flower bed and no matter how much we bothered it, that damn snake kept coming back. finally my fab husband caught it and took it to the woods. i am pretty sure he will be back, he was loving life up here and the dogs did not scare him off. I HATE SNAKES. god help him if i get a hold of him.

the girl is still away enjoying her vacation!!! i miss her tremendously and so does her daddy. the puppies are pretty lonely without her pestering as well. i visited with my mom today and that was nice and I went swimming last week and that was LOVELY.

well there is my update for now.. no new news on the lupus or ra front, still hanging!

positive days

2009-06-29T21:29:00.005-04:00

i have had some really good days lately. i never have days where there is no pain or some issues, but at least i can do some simple every day things. that makes me really excited!! opening soda bottles, putting on makeup and getting up without much help are just a few things that have come easier for me lately. that's a good sign right?

i need to get back to the doctors soon, it has been 3 mos since i last saw him. well that is mostly because i did not have insurance, but that all has been resolved. THANK GOODNESS. i tried my first gluten free potato chips yesterday and it was fab!!!

i started some more work with the neuro vet - working on newsletter, survey and some web stuff. i have enjoyed it tremendously. i just realized i never looked into something for him. WHOOPS.

i have a full schedule this week - work, consulting and catching up. hopefully my body will hold out to make it a good one.

maybe my lupus and ra are finally in check for a bit?

it's been a minute

2009-06-26T19:16:00.005-04:00

since i been in the mood to post. i have felt good, knock on wood. i have learned to live with the usual pains of my diseases. better yet, i am learning to manage them. it feels good. scratch that, it feels amazing. i am slowly regaining control over this time in my life and the diseases. who would have ever thought i would -- i surely did not.

work is work, i enjoy doing it and want more of what I used to do -- web work. that too will come with time.

the girl is gone on vacation for while, so hopefully i can get some other things done. the dogs will get tons of kisses and hugs from me since i don't have the girl.

above is a picture of the puppies and momma (those who made it) that i tweeted about a few weeks ago. piggy, whiny and Micheal are all doing well (those are the names that stuck and they are all girls). cheers!

here's to better days ahead!

wow, painful

2009-06-15T20:16:00.002-04:00

ok, so i get so tired of the new and old symptoms of my diseases, but man the backs of my knees and my elbows are killing me!!!! nothing seems to relieve the pain. soaking, pain meds, rest, rubbing and exercise have all failed me. damn!!! i had a fairly quite weekend. i caught up on season 1 and 2 of dexter. love that show!

the girl has a birthday coming up and then to the beach for a while.

i have noticed that the food thing is an issue again -- no appetite or taste for food. i do drink fluids but the food thing has gone into concern mood for me.

well off to figure out what else i can try to do to relieve the pain.. .WISH ME LUCK!!

A Lupus free moment

2009-06-11T10:18:00.004-04:00

no post today about my icky disease, but a moment of celebration!! My daughter graduated 5th grade and it was wonderful!!! These girls have been together for a long time. the four hand signal is because they are known as the fab four. My how time flies and things change.

frustration from lack of support

2009-06-06T20:04:00.004-04:00

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...

hmmm

2009-06-01T14:44:00.002-04:00

so i tried to call my mom today to talk. i really need to talk. i am finding it more and more difficult to maintain. this blip in my life is becoming very overwhelming and rather difficult to stay positive. i started cracking on saturday and tried to push it back but it is right on the surface. we so need help it's not even funny and i am not sure what to do anymore, i am out of ideas. i am out of a lot of things now...

where did that time go (this week)

2009-05-26T00:15:00.002-04:00

well my weeks are going by quickly. in about two weeks the girl will graduate, or how they say in public school - bridge. to me she is going to the 6th grade. not bridging. i went to private school all my life and we had a kindergarten graduation, eight grade grad and then the REAL one. not this prek grad, kid grad, 5th grad and god know what else. i think she is excited, she has her dress, shoes and family has been invited. i think i am in more shock that my girl is turning 11 soon. where did time go? that for a much different time and different blog.

i have had a full week, working more then scheduled and paying for it dealing with very painful legs and arms. but at this point i am emotionally feeling sooo much better that i can deal with the pain -- i can manage it now. i have noticed a change in me - less negative, not so stand-offish and wanting to reach out and be with folks. i finally plugged the phones back in. yes, i have had them unplugged for a good three weeks. so this is a pretty big step for me. the boy pushed me to start dealing with all the other stuff and i think i am ready. i just need to find that job --

the puppies are doing well. they have served many purposes thru this journey. they have helped me stay up beat, gave me a reason to get out of bed after the girl went to school cause they HAD to go out. they have put up with me being out of it, cranky and very (VERY) needy. i have been teaching them how to pull me up from the couch since that is becoming more and more difficult and they are learning but not quite there yet. i have bugged them, poked them, chased them, hugged and kissed them so much that they won't do anything without me. most of the time they need me to feed them, take them out and just be in their presence. not a good place since others need to be able to do these things - not just me. but man, i am so grateful they have been around in my darkest hours.

the girl traded in her ds and a boat load of games today to get the new Nintendo dsi - she traded in so much it only cost her 37 smackaroos. she was very excited so that made me jump for joy.

well tomorrow is a day off and i hope i feel well enough to get a few things done around the house and not just sleep-- but the weather does not look promising.

glad for a day of rest?

2009-05-21T09:31:00.002-04:00

have been a little busy and a little under the weather this week. i take it all with a grain of salt. at least i am able to get up, look presentable and somewhat tackle the day. i am grateful for that because not so long ago i could not even get out of bed.

i am trying to reach out to those friends that i let slip while i was going through my bad time, and that is hard.

welp, i need to focus on my day and get moving.

when did it all go wrong

2009-05-18T20:28:00.002-04:00

that question keeps popping in my head lately. the better question is: how can i fix it all? i don't have that answer just yet. i know things are pretty crappy in my world in terms of finding a job. things are ok with my health. it is NOT easy juggling lupus, rheumatoid arthritis, Renaud's syndrome and vasculitis all at the same time, but i am managing to keep it in check.

now i really need to pick myself up, dust myself off and get things on track. still, what are my options?

more pondering is in store for me. i am really,really tired tonight. i just got my shot, ate a little dinner and cleaned up. the question is now: should i turn in for the evening so i can be super productive tomorrow?

sad girl

2009-05-15T16:49:00.003-04:00

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 :)

very tired

2009-05-14T16:59:00.000-04:00

have been working hard and not had any real time to slow down. today it caught up to me. lots of pain, slow to move and hands are on FIRE. hopefully some down time tomorrow will make it all better.

got the girl's concert tonight and then i am off to bed early to get some much needed rest. ahhh.. sounds to good to be true.

peace

May is Lupus Awareness month

2009-05-10T18:37:00.003-04:00

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...

YES, FINALLY

2009-05-07T17:23:00.004-04:00

got some health insurance and ordered a boat load of meds to day and last night. finally, amen, thank you jesus. well actually thank you MG. one thing crossed off my list, now on to a full time job.

i also purchased a sweater for 2.83 --- WOW what a bargain :) I spent a good amount of my time yesterday organizing my closets and doing work for a dr on the web. that can be a little lonely.

i have got to get better about eating before i go to my gig -- that is too long to go without food. i am tired today and my legs don't quite agree with how long i was on them today. but i am ok and thankful for another day.

oh yeah and I also started putting in motion the soccer party, the invitations, set a scrimmage for saturday and did a little fund raising for the team trophies .... not bad

realization

2009-05-05T21:11:00.002-04:00

i think i have come to a rather sad realization today -- i no longer like working on computers or doing web work. i think i am toast and the satisfaction is gone. i have done this kind of work for a long time and realized last night after doing some web work and working on 3 computers at once ( 1 monitor caught on fire, one won't connect to the internet and the other network adapter is fried) that i don't enjoy doing it anymore. it made me miserable. wow, there - I said it. i know i am good at it but not sure if it can make me happy anymore.

i guess having a disease that limits many things in life makes you take stock and this chick is not happy with the route she has taken and needs to make a few changes that work for the lupus/ra and for me -- gina. i think most people forget about me. i have for a long time.

i had lunch with a friend the other day and he mentioned that people kept asking about me. ha-- that's funny. my first response (and the one i actually went with) is that i took care of those people for 7 years and i am tired -- my energy is tapped and i just am focusing on me, my health and my family right now. i am changing or shall i say - "EVOLVING" - learning, morphing, growing -- living. every day is a new challenge and thank god i get a chance to do it again -- cause there are days where i don't feel that lucky or if i will even get another chance.

well i am getting off this computer, not working on a website tonight (nor attempting to fix a computer) and looking forward to my next chance -- tomorrow. diesel is calling me to snuggle and i think i will go snuggle. :)

another weekend down

2009-05-03T22:40:00.002-04:00

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!!!

ok, trying slowly

2009-04-30T19:27:00.002-04:00

to get back on my feet. working is a problem right now, so i am starting slowly. hopefully i can go back up to full speed soon (if i ever find something). i think (knock on wood) i got insurance again. that would be a huge relief. i really need to ring the doc cause the vasculitis on my hands are back and getting worse, so maybe a pulse of steriods would do me good right now. who knows.

lots of soccer this weekend (if the weather holds out) - a scrimmage on saturday morning and game sunday. i need to start planning for the end of year soccer party and ordering trophies. yuck!! but i am sure i can get it done all by myself :)

sidenote: i have been catching up on the sopranos ( i started watching it later on) and finally know what the hell happened to so many people!! loving it!!

subtle reminders

2009-04-28T13:52:00.002-04:00

on days i feel good, i am always subtly reminded that I have lupus, ra, reynaud's and other lovely autoimmune diseases -- just so I don't get confused and think i am healthy. sunday rendered my left leg useless, which i did not know until i tried to walk and i fell. kinda funny -- all i could do was laugh. it is just my disease letting me know it is still alive and kicking. yesterday was a treat because i felt like pins and needles were attacking my arms and legs all day long. i have to admit that is the freakiest feeling ever. not sure what that is about but eventually they will figure it out.

days like this make me laugh, not cry. i try so hard to get myself together and feeling ok and then these subtle reminders put me in my place and say "yeah, you may feel good, but we are still invading your body!" these subtle reminders i can deal with and will deal with. what else are you suppose to do? you gotta give lupus credit, it does not discriminate on any one body part, it goes after them all. lovely!!

weekend over

2009-04-27T06:39:00.002-04:00

and it was a nice one!! a little too hot for this time of year, but a good one. it was nice to forget the worries of not working and focus on home and family. the girl went to a craft festival with her grandparents and her friend brandon while mike and i did some yard work and hung out together. the draft was on so it was hard to get mike's attention for long.

we finally had soccer yesterday and the girls did good for not having practice for three weeks. the heat was a factor. we had one girl overheat and go home, one hurt her ankle and was out and a few just got tired way to fast. we did a lot of subbing to keep them hydrated. thank god someone bought rita's italian ice -- it helped cool the girls off. they lost the game 2-1. they played hard in the first half but died off in the second.

practice today will be interesting -- still hot and muggy. i am up early and did not sleep very well. kept on having a sharp pain in my thigh.

happy monday!

Finally - I can move

2009-04-24T10:10:00.001-04:00

the fall the other night took me for a loop! Whew. heating pads and hot baths helps, along with pain medication. i feel good today. a little optimism has crept back in and as long as i keep telling myself things will get better, i will believe it.

i went and visited with my mom yesterday. nice to see her and so grateful for her help. it looks like we will have soccer this weekend ( the weather looks great) but the downfall is that the girls have not had practice since before easter. not sure how well that is going to work in the mix. the girl gets her report card today and i am going to walk up to school to get it before she goes out with her grandparents. my daughter told me she was having a hard time with me not working and just wants me happy. that makes two of us.

i really want to go see the movie earth this weekend. the girl is going to some sort of festival saturday so hopefully the husband and I can have a date to the movies.

my lupus is maintaining - so no complaints!! well today anyway!

oops, i did it again

2009-04-20T22:11:00.002-04:00

i took a tumble down the stairs. my arm and back took the brunt of the fall. that really smarts. i am beginning to think i am a klutz. i am about to pull out the heating pad in hopes that my muscles won't get to tight.

it is raining, yet again. we have not had soccer practice in 3 weeks, mostly because of the weather. my girl is getting frustrated. so we started walking at night. as long as i am up for it. she seems to like it and i enjoy the movement.

well off to soothe my painful back and arm

reading reading reading

2009-04-16T13:45:00.002-04:00

searching for a job is a full time job. i never imagined in my wildest dreams it being so difficult. i know times are tough. I get up everyday and scour the internet, email and blogs to see what is available. rack my brain to come up with a clever cover letter to make me stand out and fill out tons of online applications and go through there 45 minute process to sign up. god knows i am trying.

staying optimistic is a full time job as well. it really is. there are only so many ways to pump yourself up when you haven't heard a word. but i do, i keep chugging along.

words of wisdom would go well right about now with a side of opportunity. i need to stay strong, focused and in a good frame of mind.

i keep getting encouraging messages from a dear friend and they really help. something will come, i just want it sooner then later.

now, another day gone and 45 more applications processed.

hannah home

2009-04-15T19:16:00.003-04:00

we are very excited that my daughter is home from her nice vacation with her aunt. she had a blast!!! shopping, reading, eating, painting toenails. all that fun girlie stuff. the boys missed her a lot~~

she wants to go back in the summer...

rocky week

2009-04-11T21:08:00.003-04:00

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

2009-04-06T14:57:00.004-04:00

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.

fresh new do

2009-04-04T14:41:00.001-04:00

i need a change, my hair had grown way past my shoulder and was becoming hideous. so today (thanks to a friend and some gcs) it was cut up to my chin line. much needed. now can i get a job please and move past this awful time in my life?

april fools

2009-04-01T18:18:00.008-04:00

ha, it's all over the Internet -- happy april fools day!! just another day to play a practical joke on somebody and no matter how bad, be totally forgiven for it. blah blah blah...

the weather here is dreary and drizzling. not the best weather for anybody. i am snuggled up on the couch trying desperately to get warm and not winning that battle. i made hot tea and layered my clothing. my bones are COLD. i was surprised to a nice day with a friend and my husband came home early so we could walk to school and pu the girl. i love it when he comes home early.

so i do have to comment on american idol from last night -- why is it every time these kiddies get to pick songs from any genre they screw it up. Megan Joy's version of "Turn the Lights Down Low" was so painful and god awful, I totally forgot why she was in the top 9. Why can't she just freaking do Amy W or Duffy and see if she can sing? everybody "thinks" she has that potential, just freaking do it and get it over with? i was extremely disappointed with 90% of the performances. one savior for the night - kris allen doing his version of "ain't no sunshine when she's gone." nicely done . i would love to see him do john mayer. that's my two cents worth.

a little journey for zoe

2009-03-30T23:34:00.004-04:00

so i decided to take my little zoe for a walk today to pick up my daughter from school. she is a pembroke welsh corgi and needed the exercise. she is very easy going and loves attention. but she is very focused on me. so we walked up to school to wait for the girl and then found her at the front doing her school safety duties. i was two steps away from her when i got snagged by a crotchety guidance counselor that felt the need to tell me i could not bring my dog to school. never mind that there are always dogs up at school and they are always bigger then my dog, what a hag. so i told hannah to leave her post and let's take the long way home. zoe did not appreciate the walk at all. the long way exposed her to zooming cars, a girl who wanted to walk her but the dog was focused on me behind them and then tons of broken glass on the ground. i then proceeded to quickly pick up this dense dog and carry her for a while so she would not get cut, needless to say she has been irritated with me since.

not sure i am going to do that again for a while...

soccer has begun!

2009-03-30T13:24:00.003-04:00

well officially last week, but my daughter was sick. so yesterday was it. she was so excited and it was a nice day, except for the sloppy ass fields. the girls were tired but hung in there. my girl stayed on top of the ball and the girls were finally showing signs of teamwork. i just wish they showed signed of ball control. the goalies have a lot to work on -- including kicking the ball out of the box and not whiffing it or kicking it out of bounds. the final was a tie game. several girls got hit hard, but did not let it get to them.

i lathered up with 70 spf as i was told, put a hat on and sat under a chair with a canopy. i enjoyed the game!!! the uniforms looked spiffy and the girls are so funny when they get together.

late

2009-03-28T23:56:00.001-04:00

have not been getting a lot of sleep the last couple of days. the appetite thing is not going the right way. forgot to take my shot yesterday and just remembered about an hour ago. so now my arm is a wee sore. finally joined twitter. the only reason was to catch up with everyone. or see what they were doing. i enjoyed a lazy day today - raining outside. this weather does me NO good. right now i am watching bad tv and feeling a tad sad cause my doggies went up to bed with my husband. hopefully the kid will have soccer tomorrow. got all the uniforms back with the girl's name on them. now i have to give them back out again.

still looking for work. still saying my prayers. still trying to stay positive.

scared?

2009-03-25T20:32:00.002-04:00

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?

much needed change

2009-03-24T18:33:00.002-04:00

so i finally made a change today. i realized over the last couple of weeks that certain signs were re-appearing concerning my lupus. the vasculitis was returning. the heart/chest pain was making a repeat performance. those are not a good sign. it means i do not have my disease under control even with the adjustments to the meds. i needed to get rid of the severe stress in my life, it was causing so many problems and serving no point, well except to make me very sick and depressed. it was mostly coming from work and I just could not do it anymore. it was one of the hardest decision ever because i am not a quitter and don't like giving up. but i needed to do it. i had to do it. i was turning into a miserable person, a terrible mom and a sad excuse for a wife.

i just could not bring myself to do it until i got a text and a phone call - one from a friend and one from my husband. i am so afraid of what is around that corner, finding a job in this economy is awful. i am hoping those who know me and my work with help me out in the category. i can hope. i have hope now.

tgif

2009-03-20T20:37:00.004-04:00

i can't tell you how excited i am every week on fridays. that means i made it another week. i am not sure how i do it, but i keep pushing through. my health is hanging. this week was kind of tough -- chest seems to flutter a lot (like i get the wind knocked out of me) and my legs are not liking the severe changes in the weather. the chest thing makes me nervous. i think i have a doc appt coming up, but i can't remember and usually get a phone call reminder -- oh well.

soccer games commence this weekend and duties for me begin. i have everything ready - uniforms separated out for each kid in a bag, raffle tickets, contracts, team money collection and rosters to turn in. whew, fun!

i just got my 3rd mtx shot at home, the seem to be going well. i am just a little disappointed that i am not 100%, but i am thinking that has a lot to do with other items then what is going on inside.

having lupus really does suck, somebody asked me the other day if that was like cancer.

love my time

2009-03-15T11:16:00.002-04:00

i am struggling with how to spend my time and dealing with all the fatigue that comes with my diseases. i push myself thru the week to make it, but saturday I am soooo whipped it is crazy. i am trying so hard to keep up, not to get worked up over situation and find something i love to do. i am happy to say that my appetite has picked up and my emtions seem to be in check latley. i am just not doing well in some aspects of my life.

i can honestly say that i am so tired of going to the doctors.

some happy moments

2009-03-11T21:54:00.002-04:00

so i made it through two days, one with a black eye and one with flowers waiting for me when i got home. the flowers made me so happy! tomorrow it is my b-day and it was just a nice thought. i won't even go into the black eye fiasco.

my health seems to maintaining at the moment. yes, i am knocking on wood right now. i have few errands tomorrow for work and a friend -- but besides that, nothing special. just me trying not to kick my ass for not accomplishing more in my life and feeling sorry for myself for having this ever taking disease. i will get past that, keep inching forward and pushing myself.

i really want to snuggle with my puppies tomorrow.... such bliss!!!

a nice day

2009-03-08T19:47:00.003-04:00

so this weekend was turning out to be low key. mike freaked out a smidge giving me the mtx shot for the first time, but it went well. the weather this week has been weird. snow in the beginning and almost 80 at the end. too much for my body to handle.

my really good friend pushed her way to see me today and i was glad. i am in the mode of really not wanting to see people, partially cause i don't think i look all that good. she took me to a lovely lunch and we had a great talk. nice :)

this week is my birthday. i will try and not get depressed on this day this year, i have lost far too much time lately to being depressed.

i totally forgot that we move our clocks ahead today. what a dork. i got a few things done this weekend -- around the house. i gotta wash my car. i am sure it will rain once i do it. let's hope i make it through another week of madness.

doctor update

2009-03-05T15:47:00.003-05:00

i forgot to update on the changes or additions to my lupus med plan. i will be getting my mtx injections once a week from my husband. i have decided to take these on fridays, so if i get sick or don't feel good, i have a few days to recuperate. i have started back on vitamin d because my totals were at 19 and they should be at 30. the good thing is that it is up from my 12 last year. and to top it all off, i am also taking the calcium + vitamin d 2times a day. this is on top of humira, plaqunil, ultracet, folic acid and the occasional vicodin or xanax - depending on how i am feeling. oh yeah, i take one benedryl a night to ensure i don't get hives. i get hives so easily. whew. yes that is a lot. kinda scary if you think about it. i try not to think about how much i take to often, then i would get upset and that is not good.

we had a decent snow in md this week. my daughter and dogs loved it. those things make me happy. i am trying to juggle things around the house and trying to get more help to get things done. my daughter is fighting me and is a tad resentful over the fact all of a sudden she has to do more, but i know i just can't do it all right now. my husband is trying too. he works full time and does what he can. sometimes i just try and do it instead of asking, pleading and explaining. that mentally taxes me.

what the heck

2009-03-05T07:24:00.003-05:00

i have been feeling pretty good. no real complaints compared to how i have felt over the past couple of months. but i have got to learn not to let certain people bother me and stress me out because it makes things physically worse for me. I have to learn to let it roll. I also need to better hide how I am feeling and reacting to those people. i am trying to learn, but man am I being pushed.

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

2009-02-27T08:11:00.002-05:00

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

2009-02-25T20:30:00.002-05:00

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

2009-02-23T20:03:00.003-05:00

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

2009-02-22T18:32:00.001-05:00

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

2009-02-20T21:05:00.003-05:00

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

2009-02-19T08:49:00.000-05:00

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

2009-02-17T12:50:00.002-05:00

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

2009-02-15T16:20:00.002-05:00

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

2009-02-14T10:49:00.002-05:00

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

2009-02-12T09:01:00.004-05:00

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

2009-02-11T19:33:00.002-05:00

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

2009-02-10T13:16:00.002-05:00

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

2009-02-08T19:30:00.003-05:00

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

2009-02-07T20:40:00.003-05:00

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

2009-02-05T20:17:00.002-05:00

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

2009-02-05T08:12:00.002-05:00

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

2009-02-02T19:55:00.002-05:00

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.

not bad for a saturday

2009-01-31T23:31:00.002-05:00

arms still bothering me, swelling still apparent. got sick last night while at birthday party for one of hannah's friend, mike drove me home (just in time). today was another party that lasted all day. mike and hannah are still there and I am at home trying to get some house things done (it relaxes me). my back yard is still frozen and lots of ice, the dogs are having a hard time not being able to run around. got another kiddie party tomorrow - laser tag and then the super bowl. i am not looking forward to this week, too much going on and I am pretty sure another round of chemo and possibly a shot of steroids to help with the swelling. i hope the hopkins folks call soon. tired tired tired, must go to sleep now.

so aggrevated

2009-01-30T22:01:00.002-05:00

I am so tired of being sick and stressed -- it has taken so much out of me it is sickening. How can someone who has a disease(s) and not be stressed. then add all the other crap -- work crap, home life and everyday life. STRESS makes my lovely ra and lupus go into hyper overdrive and this last week it crept back into that gear. Arms swelled and are painful again. Chest ACHES! tired. no day is ever the same except the medicine and the stress is just getting worse. something has got to give and I am so afraid it will be my sanity. I would like a vacation and for folks to back off.

friday blues

2009-01-30T07:02:00.002-05:00

What a week. Still no word about Hopkins appt. I have a reprieve from methotrexate this week and my arms are killing me. I did not get home until after 8 last night and treated my self to taco bell.

I need to sleep, rest and not worry so much... easy to type, hard to do.

Going

2009-01-28T21:12:00.001-05:00

crazy...

Hopkins is suppose to be in touch soon. My hands are starting to bother me again and my arms are getting bad as well. Must be the steriods wearing off.

Gotta get some rest and less stress

Trying again

2009-01-27T14:27:00.001-05:00

So there is one thing I know for sure, I miss blogging. It was a good way option to vent about my diseases. The problem was I got so sick I could not handle blogging or even typing. Over the last 6 weeks my diseases have taken a turn and it has left my doctors shruggin their shoulders and passing me on to Hopkins. I am glad that they are but concerned and confused. God only knows when I can get in there (my doctor is facilitating that) and not sure how long I can go on with the current treatment. I have a healthy dose of immuno-suppressants that make me freak every time some one sneezes or coughs. I have begun plaqunil again but that takes so long to kick in that I won't know for a while if that helps. my major concerns is the vasculitis. That is freaking me out. They have controlled it lately with methotrexate and steroids, but man that is no fun. I am petrified once they stop it will come back. They have no idea why this has happened which leads me to believe they have no idea how to treat it long term. My blood work is not showing improvement in certain areas that seem to point to my lupus.

I am tired of worrying. I hope Hopkins can get me all sorted out like everyone seems to think they will. I can be hopeful...

I give up

2008-09-18T21:10:00.003-04:00

Things were going ok in NY until today. Had to go into the Hospital for fluids and antibiotics. I had developed an infection and then on top of that became dehydrated with an elevated heart rate. I finally got released and can't wait to get home. Good times. I am done with traveling. PS> Thank goodness Sandy M was here with me....

Picture Day

2008-09-12T08:01:00.003-04:00

Hannah D 091208, originally uploaded by hdsmom.

Today is picture day. Gotta love the dress. I can't stand that I have to get her ready early and then who knows when her pictures will actually take place. We have had a few distasters in the past couple of years and they make you pay prior .. I am not holding my breath!!

Everyone and the dogs are doing pretty good. I leave for NYC on Monday for Web 2.0 and don't return until Friday. I will miss Hannah's soccer practice (hmmm-- mike will survive). My washer broke so I am hoping the guy can fix it before I leave. It is always something when you own a house. The good thing is that the washer is under warrenty and is fairly new.

School is going well for Hannah. She wants to join chorus, so I think she will be singing this year instead of doing the Girl Scout thing. But I think I will still sell cookies. Beware folks, I will be hitting you up. Hmmm, I wonder if I have time when I come back?

Work is work. I have gone from being passionate about what I do and slid into neutral. I guess that is my survival instincts kicking in and protecting my health.

cheers!

Hanna has passed

2008-09-06T17:12:00.003-04:00

She did lay down some rain in our area and the wind is pretty high, but I am pretty sure we are on the tail end of it. We needed the rain, but not that much in that little time. The dogs hated it. They would NOT go outside unless it was necessary and that was only like three times today.

We will have house guests tomorrow - Jen and Cailyn. Cailyn has to go back in the hospital at John's Hopkins to start a new diet to help with her infantile spasm (and epilepsy) and my house is way closer then hers. Hannah is excited.

Only one more week, then I am off to NYC.

Happy Birthday DIESELLLLLLLLLLLL

2008-09-04T07:41:00.003-04:00

My boy turned 3 on Monday. Finally legal.. :)

Well I made it thru the first day of the staff summit. It was not bad (considering last year). Would prefer not to hear the term "goo" again and really think there will be a team in place for goo. Good times.

I really have to rant about one thing at the event. The way people dress. Um, it's not a party, bar or event to find a date - it is a WORK EVENT. Please keep your bar attire and booty call outfit at home. I mean -- please people. I have NO desire to see that much of you at a staff event. My question is -- Did you look in the mirror before you left? and if you did - are you blind? And yes, that mirrored lied, you don't look good.

thanks!

So..

2008-08-28T07:26:00.003-04:00

This post has no Hannah or dog content.

Things have been rough for me lately, more work, but some home. I was listening to my iPod this morning (per usual) and this song's ending really struck me and well, made me think of myself:

"...Oh, tell me I am not the only one going through it all. Oh, sometimes I feel like I'm the only one going through it all. But it's time, time for me to shine. So it's about time for me to shine."

Yeah, it is time for me...

Whew...

2008-08-26T17:30:00.003-04:00

Well we made if through the first and second day of school. Strangely enough, it feels as though we never left. Tuesday's are kinda hard, rushing to pick up Hannah, get dinner and get the dogs before they IMPLODE. You can actually hear Ripley yelping before you get in the house. And once you do get it the house, complete chaos ensues... for that 15 minutes I actually dislike my life. I ask "why did I do this to myself?" And then it all dies down and I know my answer... cause I am absolutely crazy. A lot of people would agree with that!!!

Well this week is a short week and so is next (well kinda-- I am sure the summit will kill us all) and then after that I am off for a bus trip that I am looking forward too -- time for myself. But I am pretty sure after the first night I will be bored and miss my crazy life. I have yet to find anything that matches that intensity.

I would like to get all the painting done so I can have my fantastic laundry room back -- it has become the makeshift paint shop and supply area. UGGHHH!!!

On another note, FOOTBALL starts this weekend so that means I must beg Mike to make CHILI!!!!!! And then soccer. Poor Hannah will have less and less spare time. Focus this year will be on school and other school/athletic activities.

Welp the boys are begging me to go out for a romp and my eyes are begging me for a nap. Guess who wins...hint:look at that face above... pure heavan.

First day of school - 5th grade

2008-08-25T08:10:00.003-04:00

First day of school - 5th grade, originally uploaded by hdsmom.

So we are all ready to walk up to the first day of school. I don't think Hannah really slept last night. Mike couldn't make the first day. She is really excited. She packed lunch and had her outfit all ready to go.

Here is to another successful school year!

SATURDAY BEFORE SCHOOL

2008-08-23T18:54:00.003-04:00

IMG_4405, originally uploaded by hdsmom.

So this is it.. the last weekend before school. I think we all are all prepared. Hair cut, school supplies done, new school clothes and everything else that goes along with school.

Hannah has been playing soccer in the backyard with her dad (the new goal he made last weekend) and she has her room all ready for her brand new bedroom furniture. We ran out to get new sheet sets today. I can't wait. We picked this fab hot pink satin bed set ... and matching rug. I kinda think I am as excited as she is...

She has changed alot this summer. Not liking things as she once did, prefers to be spoken to as a young adult, cares about her clothes, hair and other things. No more kiddie things. She is growing up ( I just wish other folks would realize that)!

She had her asthma check up this week and did fab for one expection. She has another staph infection. I gotta be careful. I think we are going to have her tested for being a carrier.

Things are ok with me. I realized today what it takes me to get through a day of work. Let's forget all the other meds I take on a daily basis, to work through a whole day I must now take at least 4 pain meds and wrap at least one leg with Lidocaine patches. The body is not as forgiving. Ha -- I am getting older.

short week for me this week, thank god cause I am just getting 2 irritated with folks at work -- no time for anything. A few indulgences this week (hair) and then a long weekend.

Boys are FAB. Diesel turns 3 on Sept 1 -- I can't believe it. Now he is legal. I think I will share a glass of wine or brew with him.

Cheers to final week of summer....

Early Monday Morning

2008-08-18T06:14:00.003-04:00

IMG_4316, originally uploaded by hdsmom.

Not much going on this weekend. Cooking out on the grill was the theme and building a soccer goal in the back yard for Hannah took up some time on Saturday. The weather has been FAB!! Sunday was devoted (finally) to painting. We painted the spare bedroom (actually one wall-deep blue ) and then we moved onto the hallway and stairs. Not bad for a day!! We spent a lot of time this weekend watching the Olympics.

Hannah starts school in one week. I am off for a few days for a mini break and to do a few things before school starts.

The Boys are great, loving the weather and playing outside.

I am off today to go babysit for Alyssa and Mikey -- wish me luck :)