What am I Thinking?

I really have no idea what I was thinking but I went out and got a part time job.  What am I nuts?  I'm working 10-5 on Monday, Wednesday and Fridays doing database programming like I used to do prior to having my children.  I was so excited about the job but now that my first day of work is tomorrow, I'm scared out of my mind.  Both of my children are in school on those three days so I will only be missing about 2.5 hours with them on those days when they will be in aftercare, which they love, but I am an absolute mess.  I have spent the last 3 days crying on and off about missing my "babies".  They have gone to aftercare this whole past week just to see how they would do and how they would like it and they absolutely loved it; everytime I showed up to pick them up they asked if they could stay later but I'm the one suffering.
I'm torn between wanting to do something for me and also between trying to manage being mommy, wife and a person with a disease.  I know that mentally going back to work for me is going to be a very good thing especially since it is only 21 hours per week but physically, I'm very afraid of what it is going to do to me and if I will be able to handle everything.  2 months ago it seemed like such a good idea to start looking for a job but I never thought one would come along so fast that had everything that I was looking for but now that the day is here, I am so scared.
I guess only time will tell if I will be able to handle everything but I sure wish that I had a magic crystal ball that I could see into the future with; it would make decisions like this so much easier sometimes.

So Thankful

I can't believe that Thanksgiving is tomorrow, how time has flow by?!  I am so very thankful for everything that I have in my life.  Even though I have Lupus, I am relatively healthy and could be so much worse off.  My husband is healthy and most importantly my children are both healthy.  Tomorrow is a day of reflection for everything that is good in our life and I thank God for all that I have been given, both good and bad.  The bad has always made me a stronger person so I am even thankful for that.

Happy Thanksgiving to Everyone.  Enjoy the day.

Shouldn't I be more empathetic?

Everyone thinks that I should be so empathetic because I live with pain on a daily basis and that I completely understand what everyone is going through when they are in pain.  Let me preface by saying that I truly don't mind listening to people complain when they don't feel well or have a legitimate complaint but please don't complain to me about a problem when it just suits you.
I know of a person who is ill, this person has every right to complain, but only complains when it suits her. She can travel for 3 hours in one day when it is something that she wants to do but when it is something that a friend asks her to do; it is just too much for her.  I just despise when people use their illnesses to benefit themselves and to use it as a crutch.  To me it is the same thing as using a handicap plate when you don't need to use it but just want a closer parking space.  I truly hope that I never get to the point where people feel that I use my illness as a crutch and if I do, please tell me.
I feel bad that I am not more empathetic towards this person but when I see her being so selfish it is so hard for me.  I truly do feel bad for her that she does have to live in pain but I just wish she would be honest with herself and everyone else and say that she just doesn't want to do it; don't blame it on an illness because one day it may become reality.

Living Life in Pain

It can often be so hard to take care of the kids and my husband while living my life in pain.  For the past 2+ months I have been feeling the pain from my Lupus lessen thanks to a wonderful doctor and new medication but I have been dealing with this other pain that has been increasing.  I think it is muscular but today it has finally reached the maximum that I can deal with and I will need to call my primary care doctor tomorrow.  However, it is making it very difficult to take care of the daily routines of the kids.  I hate living in pain but feel like I will be destined to live in pain whether it is due to Lupus pain or something else.

Sorry that I have been gone for so long

I need to apologize to everyone for being out of touch for the past month.  I was in a cast on my hand which made it nearly impossible for me to type so I wasn't able to keep the blog updated but now the cast is off so I hope to keep it updated once again.
My life has been changing pretty rapidly over the past month since I have been unable to type.  My special group of friends and my immediate family raised close to $2000 for the Lupus Alliance of Long Island/Queens Walk Along for Lupus and I am so greatful for everyone for the donation and support.

I also got a part time job which I start today.  It is the ideal mother's hours.  My daughter goes to school full-time but my son goes Monday, Wednesday and Fridays 9:30-2:30 so my job is MWF 10-2.  I'm very excited to have some of my own independency and some of my own money.

Again,  I apologize for being out of touch for so long but promise it will be better now that I am out of my cast.  Hope everyone else is doing well and I look forward to chatting again.

Making up for lost times

I think my guilt over my illness has gotten the better of me as I seriously think I may have overextended myself with activities for my children.  As you all know, I have a 5 & 6 year old and one is in kindergarten and the other is in pre-K.  There isn't a lot going on with my son yet aside from his football practices which are twice a week and then games on Saturday.  However, my daughter really wants to do Daisies (Girl Scouts) and the only way that she can do it is if I volunteer to be the troop leader.  I spoke to them on Saturday and they basically said that she would be waitlisted but not to hold my breath.  So, now in addition to being Team Mom for Cheerleading, Class Mom for school and on the PTA, I am going to be a troop leader for my daughter's Daisy Troop.  I know that I will probably be just as active with my son when he gets into school also.
I really hope that I am not overextending myself but I also am beginning to realize that these are things that I can do even though I am sick.  Most of the work involves emails, phone calls and that sort of thing which I can do while laying on the couch and resting.  I also haven't seen her so excited to have mommy doing these things with her in a long time.  My husband is concerned that I am doing to much and maybe I am but to see the joy on my kids' faces makes up for my fears.

Nutrisystem and weight loss

Well, after complaining about my weight and being in a pity party for the past few weeks, I decided to do something about it.  I joined Nutrisystem and am starting it today.  Even though I may not loose a lot of weight quickly due to being on the prednisone but at least I am feeling like I am doing something about it.  I will keep you all updated but I am very proud of myself for trying to retake charge of my life.  Lupus can take control completely away from you and that frustrates me so much that I feel like maybe if I can take partial control back then I will be in a much better place.

Feeling down lately

Recently my husband told me that I am not myself lately and that I seem depressed.  I definitely am feeling depressed even though I have nothing to be depressed about.  I know why though; I have gained weight and for some reason, I have developed acne.  So, right now, I feel like I am fat and have teenage acne, making me feel very very unattractive.  My husband tells me it doesn't matter but it matters to ME.  I want to look in the mirror and like the way that I look; which I hate right now.
I ended up joining Nutrisystem this morning in the hopes that it will help me to loose some of my prednisone weight.  I know that I should be ecstactic that I am feeling better (even though I was in the hospital on Saturday) and not care about the extra weight but I do.  I also know that if I can loose some weight then I will feel better both mentally and physically.  Having an extra 35 pounds on my small frame can't be good for my joints in my legs.
I honestly feel that if I can rid of the acne and loose at least 10 pounds, then I will feel much much better about myself and in turn will break out of this depression.  Wish me luck as this is not going to be easy.

Weight Gain

I just need to vent....I have gained 22 pounds in the last 5 weeks and there isn't anything at all that I can do about it. I spoke with my doctor and it is all water weight but there still isn't anything to be done. None of my clothes fit, I hardly eat anything and I keep gaining weight. I know I should be grateful that I am feeling better, which is probably why I am complaining, but this is ridiculous. The doc said it will definitely come off eventually but will take time. I am so upset!!!!!   I feel so unattractive and just plain fat.  Everyone keeps telling me that I still look good but I feel so fat that I don't even want to go out in public.  I haven't been this heavy since I was pregnant with my children.  I definitely am getting more depressed about this.  I really hope that now since the prednisone is decreasing and I'm now only on 15mg the weight will begin to come off.  I know that I should be grateful that I am feeling good enough to complain about the way I look but it still sucks.

My baby girl is off to school

I can't believe it but my baby girl started Kindergarten yesterday and I don't really know how I feel about it.  I had a mental breakdown a few weeks ago and spent the night sobbing about it but have been much calmer about it since she was so excited.  I can't believe how fast the time has gone by and I'm so very fortunate to have been able to be wiith her everyday.  There may be times where physically I can't do everything but at least I was with her.
My son will start school next week and will be going Monday, Wednesday and Friday for full days so I am hoping that time will allow me to rest so that when I am with them, I am at my best.  It is definitely going to seem quiet without both of them in the house but I know they are both ready for this next part of their lives; however, I don't know if I am ready to have them grow up :(

Happy Labor Day

Happy Labor Day to everyone.  I hope that everyone is able to spend this weekend relaxing.  I know that I am doing a lot of relaxing.  Relaxation is a wonderful thing!!!!

Our newest addition

Playing with a new toy

After 11 hours of driving in one day, we finally arrived home with our newest addition, Dakota.  She is our Golden Retriever puppy and we are all in love with her.  The kids are having so much fun with her and she appears to be the very mellow, calm dog that we were looking for.  The entire 5 1/2 hour ride home, she slept in her kennel and then has been playing with her toys and the kids.  I've attached a few pictures so that you can see what a cutie pie she is.

Sleeping on the ride home

Full body tremors

Do you want to know what is super annoying?  Having tremors throughout your body.  It started about 2 months ago with just my fingers but now it has moved to my whole hands, arms and face; which I guess isn't my whole body but it is still very annoying.  They are so bad that when I drink from a glass you can hear the glass clanking against my teeth.  My kids are constantly asking me why I am shivering and I have no explaination for them except to lie and say that I am cold.  How do I explain tremors when I don't even know what is causing them?  The one medicine that I am on that could cause it is being reduced so I don't think it is due to that.  They are very annoying though and even though they are not causing me any pain, they are driving me nuts!!!!

Why must I jinx myself?

I don't consider myself a highly superstitious person but after not having to take a single percocet since Sunday for my migraines I was so excited to share this and told my mom that I thought things were improving for me.  Guess what popped up about 4 hours after talking to my mom?!  That's right a migraine that is a killer so I'm back to taking percocets.  From now on I am going to just keep my mouth shut.  I'll try and write more tomorrow but need to go lie down in a very dark room.

Why must I always pay for having a good day?

I am so sick and tired of having to "pay" for having a fun day with my family and friends.  Yesterday we ended up taking the boat out to the beach and stayed longer then we planned because we were having so much fun.  I was fully sunscreened and sitting under an umbrella so that the sun would not get to me.  The kids played in the ocean and then in the bay and then in the sand.  We all had a blast sitting around and relaxing and talking.   Our family had planned on only staying for a few hours but then that turned into 6 hours but we were having so much fun and it was such a beautiful day that we decided to eat dinner at the beach and then head home.
Today, though, I am paying for it big time.  This frustrates me so much because I just wish that I could have fun without worrying how I was going to feel the next day.  I don't think I can get anything done around the house today or with the kids because I feel so lousy and I barely did anything.  Sometimes having Lupus really sucks!

New Addition

I just have to share because I am so excited but we are adding to our family.  We are adopting a Golden Retriever Puppy who will be coming home to us on Labor Day weekend.  Myself and the kids are super excited about it but my husband is stressed about it which makes me feel really bad.  I believe that this is a good idea for our whole family but my husband worries that the stress of another dog will be too much for me to handle.  I did a lot of research and lot of thinking about it and feel it is the best so I guess only time will tell but I am so excited. 

My apologies

I just got a message from a friend saying that she was missing reading my blog so I wanted to apologize to everyone for being absent for so long.  It has been a crazy few weeks.  I'm still dealing with migraines that are almost incapacitating but will be seeing a neurologist hopefully soon.  My daughter keeps rubbing my head for me because it feels better when she rubs it and it makes her feel good to think that she is helping me to feel better.  I wish I knew what was going on with them but I guess I will find out soon enough; in the mean time I am taking oxycodone daily to keep them manageable.
My husband and I also took a vacation to St. Lucia.  It was wonderful.  The kids stayed with my parents for the week and it gave us time to reconnect as husband and wife.  Fortunately, I felt stable while we were there so we were truly able to enjoy our time together.  It has made a huge difference in our life and I am so thankful that we were able to do it.

What a great day!

I just have to share that I met another Lupus patient today for lunch and it was wonderful.  We met at Chuck E Cheese so that the kids could play and we could chat.  We talked for about  2 hours and it was so nice to meet someone who has been through something so similar to me.  She gave me some awesome tips for traveling and also some suggestions on how to deal with these horrible headaches as she had them when she started the same medication.  I'm really hoping that her suggestions work. 
Sometimes it can be very lonely having a chronic disease, especially when I'm not stabilized, and it felt so good to be able to talk freely about it and know that the she knew exactly where I was coming from.  The kids were awesome and played the entire time and I was so proud of how they behaved; it was like they knew that I needed this time for me.  I feel rejuvenated and ready to continue fighting with a much better mindset knowing that she has been in a much worse position than I am and she has come out the other side and is now feeling good.

Go Away Headaches

I absolutely hate headaches and I've had one for the past 3 weeks.  I wake up with it and I go to bed with it and I'm getting very cranky because of it.  My daughter keeps massaging my temples for me and kissing my forehead and asking if it is better.  I so wish it was that easy to get rid of this stupid headache as it is really interfering with my summer.

Lupus Walk 2010

If anyone is interested in donating or walking in the Lupus Alliance of Long Island/Queens Lupus Walk this year I've included the link to my webpage.  This webpage will allow you to make a donation or register to walk with Team Lupus Mommy.
Thank you for your support.

http://www.firstgiving.com/corymclaughlin

What to do, What to do?

I spoke with my rheumy for my weekly check and I mentioned that the naturopath wants me to start on a very low dose of DHEA to help me get off of the prednisone.  Unfortunately, she doesn't think it is a good idea and told me not to take it, while he was pretty adamant about me taking it.  I'm stuck in the middle of who do I listen to.  Both of them are new doctors to me and both come highly recommended but they seem to have differing ways of doing medicine; which makes since one is into the herbs/natural things and the other is into regulated medicine.  My gut instinct is to listen to my rheumy and just follow the strict diet he proposed to see if that helps and if it doesn't then check more into the DHEA.  I was surprised when she didn't think it was a good idea but I feel like with me increasing one med and trying to decrease my prednisone that adding something else into the mix may not be the best timing and that is probably where she is coming from.
If anyone reading this has taken DHEA, I'd love to hear your experiences with it.

Saw a Naturopathic Physician Today

After much coercion from my mom, I decided to see a naturopathic physician today and it was one of the best decisions that I have done.  Thanks Mom!!!   Sometimes, mom's do know best.  Anyways, I met with him today for about 45 minutes and he is going to do a bunch of blood work to see if there is any vitamin/mineral deficiencies or any other underlying causes that could be exacerbating my symptoms.  Along with that, we are going to try two supplements to see if they can help increase the efficacy of the prednisone while bringing the dosage of the prednisone down.  He also told me to loose about 20 pounds and put me on a very strict high protein/low carb diet which I am going to start tomorrow.  It was a very enlightening day and I really look forward to getting started with this.  I figure it can't hurt anything and at best it will help me to reduce my need for prednisone.

I finally got my tattoo

I finally got my Lupus tattoo last night and I absolutely love it.  I've been thinking about getting another tattoo for months and months.  I have one on my lower back from when I was 22 but I wanted something to symbolize my fight with Lupus so after telling my family I went by myself and got the Lupus symbol tattooed on my lower right ankle near the back of my foot.  It is a small purple butterfly as that is one of the symbols for Lupus and it shows to me what I am up against and even though it is just a picture I feel that it will give me strength as I fight to stabilize my health.

Ruined the Day

Today, we decided to head out on the boat to a new location on Fire Island called Atlantinque.  It is supposed to be great but is reserved for Town Residents but they said at the discretion of the dockmaster they will allow other towns.  We decided it was worth a shot.  After an hour of boating in 95 degree heat we got there and pulled into a slip only to find out that they weren't allowing non-residents.  By this point, I was feeling like crap and now the kids were cranky that we couldn't see the new place. 
We decided to head home because of how lousy I felt from the heat and the sun and my heart almost broke when my 4 year old started crying because we couldn't go to the beach and it was all my fault.  We could have headed to a local place on Fire Island or anchored offshore but I just didn't feel well enough to push through it today.  I felt so bad but there was nothing I could do about it. 
I know that I ruined the day for both of the kids and probably a bit for my husband.  I hate when things are out of my control or when I can't push through them and today was definitely one of those days.

I officially have Lupus, again!

One of the side reasons that I chose to see another new rheumatologist was to get a second opinion to make sure that I do in fact have Lupus since the treatment over the past 2 years hasn't really helped much; yesterday it was confirmed that I do in fact meet the criteria for Lupus.  In order to have Lupus, you need to meet at least 4 out of the 11 ACR criteria and off the top of my doctor's head we got to 7 and then stopped counting.  I was glad to hear this because at least I knew we had been fighting it all along but also kinda felt back to the beginning since we are still trying to get a medication regime to work for me.
I spent about 45 minutes with just her and I talking and discussing options and right now we are going to "max" out my "big gun" med in the hopes of getting me off the prednisone.  I will need to go for weekly bloodtests but if all goes well, then I won't need to see her again until the middle of August which is great.  I feel so much more comfortable with this doctor than anyone that I have in the past and truly believe that she can get me stable.

Back into NYC today

I'm dreading the trip back into the city today but I my rheumy wants to see me again so I am heading back into the city to the hospital to see her.  I'm not sure what I am more anxious about...going into the city myself or going to see her.  I'm taking the train and then a cab into the city since I chickened out on driving in but also don't want to get stuck in Friday afternoon traffic, which I am sure that I would.  I think she is going to have all of my bloodwork back so I'm sure we will go over that and also discuss what the next steps will be for me...I assume it will be increasing the CellCept medication but only time will tell.  I'll try to update after my appointment with how it goes.

On a good night, the kids are ecstatic to have our babysitter, Kylie, coming over to stay with them!!!!  They have so much fun with her and it is great to know that they don't miss me when I am gone for the day.

Great Letter to Family and Friends

I found this online at one of my Lupus boards and thought it was so appropriate for my friends and families especially since I am going through such a rough patch lately.  It is relatively long but worth the read in my opinion.

This article is also useful for understanding and explaining the difficulties of living with lupus.

It seems to have been inspired by the Letter to Normals written about fibromyalgia by Mr Robert JJ Waller of fibrohugs.com, this version was composed by somebody called Cynner and should be attributed to a Mr B Siviter at http:// studentnurseshandbook.com as well as Mr Waller.
My illness is a difficult one to understand, even for me. Many of the problems it causes are invisible and difficult to anticipate. I need you to understand that my life always is subject to change because of the unpredictable nature of the illness with which I must live.

First, let me explain the depth of this illness-
- My joints and muscles are under constant attack and can be very sore and painful.

- My skin is very sensitive- sometimes to touch, to heat or cold, sometimes even just to sunlight.

- My vision, hearing, sense of smell, and sense of taste all can be affected. I may get a very dry mouth, have mouth ulcers, have very dry eyes, or just have a bad taste in my mouth.

- My body or breath may develop an odour.

- The fatigue I get can be overwhelming- walking two feet can be a marathon some days.

- My kidneys, lung, heart and liver can all be damaged by this illness and its treatment.

- There are emotional side effects that come and go- like depression, memory loss, and difficulty concentrating.

- The medication I take has physical side effects- it may make me gain or lose weight, my face and appearance may change, there may be other effects, too.

- I may need to use walking aids, other aids like a helping hand, or sometimes even use a scooter or wheelchair. Other times I may need no help at all.

- I might not be able to drink alcohol or eat certain foods because of my medication and illness.

- The illness is here for the rest of my life- sometimes I will seem very well and back to the old me and sometimes I may become very ill and need to be in hospital. It's unpredictable.

- This is not contagious, and there is no evidence that it is something I have inherited or will pass down to children.



This is all because my immune system doesn't work properly anymore- it's lost its sense of purpose and has turned against my own cells and tissues instead of just protecting me from infection. Sometimes, I will go into remission meaning that I will do pretty well for a while- and sometimes, I will have flares, meaning that things will get very bad. I can't tell when a remission or a flare will happen, and I don't know how long either might last.


There are some things you can do which would make it much easier for all of us and I would be grateful if you would take the time to read this and try to understand.

- My body is in a constant battle against itself. This means that I will have good days, bad days, and many days in between. I can't always tell from one day to the next, or even sometimes from one hour to the next, how well I will be, so please be forgiving when I must change plans at the last moment. I don't mean to let you down.

- Some days I will have all the energy in the world- and the next day I will be half dead. It's just the way things are- please don't say "You were okay to do this yesterday".

I can't help it.

- Please don't judge me as a complainer, whiner, or as a person making more of their illness than seems necessary. Many of the problems I have are invisible to other people so please be patient, understanding and compassionate.

- I don't want to spend my days in misery, so even if I have pain, am very tired, or even if I am just worried, I will still try to be happy and enjoy myself. This doesn't mean I am physically better, it just means that I am coping. My health will never be "back to normal". "Healthy" and "better" will always be relative terms for me now.

- I get lonesome and miss being part of the active life I once lead. Remember me- call me- visit me- don't give up on me. Please don't forget me or stop asking me to do things because I so often say no. It's not because I don't want to, it's because I can't. With a little help from you, I might be able to get more involved. I want to be part of your life.

- It's okay to talk about what is happening. I would rather you just ask than pretend you haven't noticed how different I am or just avoid me. It's okay for us to talk about how my illness affects you too. I won't see it as a betrayal if you talk to me about your frustrations with my illness as long as you don't blame me.

- It's okay to say "I know you don't feel well, but I don't want to hear about it today". Don't feel that you are obliged to listen to me but if you ask how I am, I am going to tell you so if you don't really want to know, don't ask!

I will try to remember that although my illness is a huge part of my life, you may not want it to be a part of yours. If you find me overwhelming, tell me! Challenge me, but please do it with love and compassion.

- Don't try to tell me that all I need is a little exercise, or just to get out, or try a certain pain tablet, or some new treatment, etc, because it works for you or someone you know. Please don't feel rejected if you try to offer me a solution for my problems and I don't take you up on it. I am under close medical care and am doing everything I can.

- You may think I just need to push myself a bit harder or that I am giving in to things too easily. One of the problems with this illness is that if I try too hard, it can set me back considerably. I have to be more patient with myself and accept my limits- I don't like it this way either but I have come to realise that one day of trying too hard and doing too much could make me much more ill for weeks. I need to be slow but steady.

- Sometimes, I need to sit down and rest, or take a tablet right away. When it gets like that, I can't wait. I really am at the mercy of my body and even though it may seem selfish I know that if I don't take care of my self, my body will get even with a vengeance because that is the nature of this disease.

- Some of my medication may suppress my immune system and make me more prone to catching some illnesses. Please let me know if you have a contagious illness like a cold or flu. A simple illness it can be quite devastating for me and I have to be careful.

- Please don't belittle my pain or fatigue. It makes me crazy when I hear "Yeah, you may think your back aches, but you just sit all day- I spent the day in the garden!"

I wish I could have pain because I did something I enjoy- not just because my body is hurting itself. It is okay though to tell me how you are feeling- you may find that I am more compassionate than most when you tell me how you feel because I really do understand pain and fatigue, and you will find I may have some advice that can help you!



- Please don't tell me I need to lose weight. I know. The tablets I take (steroids) make me gain weight, increase my appetite, and change the way my body stores fat. I am doing the best I can. Don't criticise my eating, please. It won't help either of us.



- I don't choose to be down and miserable but depression is part of this illness. I need you to remember that I didn't choose any of what this illness has done to me- I am struggling to learn how to manage, to cope with what it does to me, to grieve the loss of my health and to do the best I can to live the best life I can. Although I am grieving the loss of who I was before this illness struck and sometimes I get so frustrated I just can't help feeling sorry for myself, it's not just in my head- it's an effect of the illness, too, that I become depressed and anxious.



- Sometimes I will have "brain-fog". It's common in this illness to have moments when your memory is poor, or to find it difficult to think clearly. It will pass. It's not permanent- so if something is important to you please don't forget to remind me! I will be grateful. It's also ok to remind me to write something down, or to check back with me later. Please don't think I am ignoring you, being difficult, or just don't care. I feel terrible when I forget.



- I need to know if and how I can ask you for help. Sometimes, I will need more help and support than other times. Please let me know if you can help. If you can give me a lift, take me to an appointment, help me with an errand or a task- maybe make a hot dish for me some night when I can't manage to make a meal- please let me know. When I am stuck in the house because things are bad, please come sit with me, even if there is nothing you can do. Little things like calling me every couple of days just to check in- sending me a note, card, or email can make a huge difference. If you can, please reach out to me. Even if you can't do anything specific, just be my friend. Your friendship is the most important therapy I have.



- I can still do things for you. Please don't stop asking me to babysit, to run an errand for you, to do something I have always done before when I was well. I'll be honest if I can't- please, if it's something I did before, it's okay to ask me again.



- Please respect handicap parking and encourage others to do the same. Sometimes, people with illnesses like mine can't get out if they have to walk far- if everyone respected handicap parking, life would be easier for me and people like me who need those special spots. Defend handicap parking and it makes a real difference.



All in all, I need you to realise that I am the same person I have always been- my heart, soul, hobbies, interests, sense of humour and mind are all still there- it's my body that is turning against itself.



Please accept me the way I am, please forgive me for the things that have changed, please forgive me and try to understand if I disappoint you, try to accept that I am not in control of what this is doing to me. Please forgive me if I let you down ? I know that these changes are hard on everyone around me, too. I wish it could be different, for all of us. With time, compassion and love, things will eventually settle and we will all adapt.



These are the things I will try to offer you:



- I will be honest with you about my limitations, and if I need to change plans I will try to be as considerate as I can and tell you as soon as possible.

- I will ask you for help if I need it, but I will accept if you can't help. I will not have any hard feelings if you say No- I will respect your limits. Please don't ever feel guilty for being honest with me. I will try not to take advantage of your kindness and support.

- I will accept if you ask me to stop talking about my problems and what is wrong with me? I don't always realise that I may getting a bit wrapped up in myself and my illness sometimes, and I don't want to overwhelm you- just be honest with me.

- I will do the best I can to be cheerful and happy, and try to be good company if you visit or call.

- I will try to explain honestly if you ask me about my illness, symptoms or medication.

- If I am feeling sorry for myself I will try not to take it out on you.

- I understand that you also need to take care of yourself- if you need time, space or to get away for a bit, just be honest with me and I will do the best I can to understand. I really do understand the need to take care of yourself more than most people.

- I will do the best I can to keep myself well, by taking the medications as I should, by doing what my healthcare workers advise me to do, and through a good diet and good rest. I won't make myself any sicker or fail to take care of myself.



Thank you for reading this and trying to understand.

Update on Prednisone Taper

Unfortunately, my body couldn't handle the taper as nicely as we were hoping it would so I had to increase my prednisone by 10mg/day up to 50mg to get the pleuritic pain back under control.  I see my doctor on Friday and we are going to discuss future steps but I'm still holding out hope that once I get on the maintenance dose of CellCept that I will be able to handle the tapering down of prednisone.  Everyone please keep your fingers crossed!!!!

Stupid Prednisone

Well, this is just a rant about the medication that I love to hate.  Prednisone has been a Godsend to me in getting my pleuritic pain under control however on Saturday I started with a reduced dosage while starting my new medication, which will take about a month to get up to the full dose.  I was truly hoping that this would work and I do think it will work once I get to the full dose but I woke up today with the lovely pain again when I breathe.  Granted, I had a very busy week and weekend and probably pushed it too hard since I was feeling good but still.  I'm going to try and toughen it out for a bit and see if my body can get used to the lower dose of prednisone over the next couple of days or until I see my doc again but I'm just annoyed that my body won't let go of the prednisone just yet.

However, I was feeling well enough the last few days to truly enjoy a great visit with wonderful friends, then a block party and then a day on the boat with my family.  I'm so thankful for the good days that I do have and take advantage of them as much as I can.

I stand corrected!

My new rheumy just called me back at 5:15 on a Friday afternoon.  I am shocked but very very pleasantly surprised.  We are going to decrease my prednisone and start a new medication called CellCept.  I have to make an appointment with her for next week which kinda sucks because I need to go into the city for it but at least she is keeping a close eye on me.  Just hope I can get a babysitter for the kids.

Waiting for another call

Well, I spoke with my new rheumy on Tuesday and we decided to keep everything as is until today.  I was supposed to call her first thing in the morning today to check in and see what our next steps will be.  I called first thing this morning and now it is 4pm on a Friday afternoon so I am not holding my breath that she is going to call back.  I'm upset because we were supposed to discuss other meds to get off the prednisone in the hopes that I could start them soon but it doesn't look like that is going to happen until next week at the earliest.  Another irrational thought that I have is that she has received all of my bloodwork and past records and decided that she just doesn't want me to be her patient.  I completely understand that it is irrational but after being burned and told my pain was in my head by my primary care doctor, I am a little leary of doctors.  Hopefully I will be able to come on tomorrow and update the blog with some good news that I spoke to my doctor but don't hold your breath.

Nervous Again

I need to call my new doctor this morning to figure out next steps and I am very nervous about it.  I know that I shouldn't be nervous but I am.  I'm worried that my bloodwork that she did on Friday will not show anything that will help her decide on what to do next.  I also don't know what she is going to do for me over the phone.  I'm not sure if she will just keep me on what we are doing now and then have me make another appointment to come in and discuss other meds or if she will prescribe something for me over the phone.  I guess I just need to wait and see but, I'm not good with that;)   I just hope she doesn't leave me in a bad place since other doctors have done that to me recently.  Guess I am just a bit gun-shy with doctors right now.

Happy July 4th

Thanks to the new doctor that I saw on Friday, my family and I were able to have an absolutely awesome 4th of July.  We spent it with friends on the beach and boat.   My husband was awesome and watched the kids the whole time so I could sit in the shade.  It was an absolutely gorgeous day and I am so thankful to have had it.  There are times when it seems like I will never be able to enjoy family time like a "normal" mommy but yesterday definitely wasn't one of them.  We had a great day and I am so excited and hopeful to have more of them if they can finally get my medications worked out.

Guess there is reason to hope

I thought I would update about how my appointment went yesterday with the new rheumatologist.    As you know, I didn't hold out much hope for relief since it was going to be my first appointment with her but she really gave me reason to hope.  She mentioned two new medicines that have never been brought to my attention before and one in particular that she feels would really help me.  She ordered 10 vials worth of blood tests to be run since she wants her own records and wanted the blood run right from her office.  I am supposed to give her a call on Tuesday to decide how to go from there.  In the meantime she has tripled one of my medications to see if that will help with my chest pains and I think it is so far.  She also was not happy that I was taking 15-20 Tylenol a day so she prescribed a narcotic to help with the pain also.  I left there feeling like I was in better hands than I have been in for a long time.

Holding out hope?

I"m heading into the city this morning to the Hospital for Special Surgery in NY City to meet with a new rheumatologist and I'm really nervous about it, hence me posting at such an early hour.  I don't hold out much hope for getting relief or getting any different answers but I feel that I have to try as I'm not getting any answers from my doctors here on LI.  The only thing that is happing is that I am getting more and more pain.  I'm very thankful that my husband is going to come in with me to this appointment so that I have some morale support.

I'm a Mess

Since stopping all of my main Lupus medications, my body is revolting on me and I am seriously debating going back on the medications myself without doctor approval.  I know that is a really bad idea but will have to see what the doctor says when I go for a second opinion on Friday because I am getting into bad shape.  My hips, knees and ankles are all very sore, I have sores in my nose and random blisters popping up on my body which I NEVER had in the past.  I just don't get it.  My energy level is 0 and it is difficult for me to even consider taking a shower, never mind taking care of the kids.  I'm trying so hard to maintain a normal life but I just can't and I'm getting so frustrated by it right now.

Second Opinions

I've been officially diagnosed with Lupus since 2001 but had been dealing with symptoms since 1996 so getting a diagnosis was a long time coming.  Because my primary care can not explain my chest pain she is beginning to doubt that I may even have Lupus.  My rheumatologist feels I have Lupus but doesn't know how to treat my pain right now.  I saw the pain specialist/chiro who is going to try PT but isn't 100% sure what is going on.  Because of all of this, I have decided to go for a second opinion.  I'm going next Friday to the Hospital for Special Surgery in NYC which is supposed to be the best of the best.  Maybe it will come back that I don't have Lupus but it is something else, maybe it will be Lupus but they will be able to get it under better control or maybe they will just come and tell me the same thing as the doctors out here but at least I will have tried.
I feel like I am back to the beginning in 2000 when I was battling to get some relief.  Sometimes the unknown is worse than the knowing.  At least when you know what you have, you know how to fight it but right now I don't know how to fight it or even what I am fighting.

Living with Pain

After seeing my doctor yesterday, they have decided that I may just have to live with the pain for now.  The prednisone is not helping and is causing more damage to my body so the only alternative is to continue to taper me off of it but live with the pain.  I can't take any narcotic for the pain because I need to take care of my children so it looks like we are going to look into alternative treatments for the pain.  I don't know what else to do and modern medicine doesn't seem to be helping me so I've made an apt with a pain managment specialist and also a naturopath that specializes in lupus patients.  I hope and pray that one of them can give me some relief.

I am very grateful though to know that they don't think the pain is causing any damage just that the pain is going to be there.  I still don't see a light at the end of the tunnel but at least I know that I will soon be off prednisone and hopefully an alternative treatment will work for my pain.  If anyone has any suggestions I would love to hear them.

How to get out of my funk?

Well, the good news is that my heart seems to be OK but the bad news is that they have no idea how to get me off of the prednisone which I need to get off of.  Whenever we try to taper the dose down the pain gets very severe and even right now I can hardly function as a mommy and a wife.  I need to see my primary care doctor today who is going to speak with my lupus doctor to see where to go from here but I need something to help me function. 
I can hardly take care of the kids and it makes me feel like such a failure.  I had to have the babysitter come over yesterday to watch the kids and then friends are coming over today to help out with the kids but this is getting ridiculous.  It has been 2 weeks and I'm feeling no better...I was but as the prednisone dosage drops I feel worse.  L & R are having their basic needs met but things like haircuts, laundry, housework and extras are just falling by the wayside.  They are both acting a bit crazy which I don't like at all but I am so tired and in so much pain that it is hard for me to even try to get the energy to discipline them.  This is L's last summer before kindergarten and I was so excited to have an awesome summer and now I am just a sick mess.  My husband and I are supposed to go away in less than 6 weeks just the two of us and right now I don't think I even have medical clearance to travel.
I know that I need to get out of my mental funk that I am in right now and in turn that will probably help me to feel better physically but without a light at the end of the tunnel then I'm just not sure how.   The latest talk is to just help me with pain managment because the prednisone is destryoing my body and I am fine with that but something needs to be done in order for me to function at least 75% of the way.  I just want to be the mommy, wife and friend that I know I can be without this stupid disease getting in my way!!!!

Kidneys Are Good---WooHoo

I just got my most recent bloodwork back and my kidneys are looking good which is a huge relief.  There was some concern that they were in distress but the redoing of the labs shows that they are OK.  I will need to be monitored a bit more closely to make sure that they stay in good shape but I'm so excited that at least one hurdle has passed and I don't need to worry about my kidneys.  What a great way to start the weekend off.

Turning the corner?

I just had to share that I woke up feeling a bit stronger today and really hope and pray that this is the turn around I need to get this latest episode behind me.  I'm so excited and even though I am still very beat up feeling, I think maybe it may be the beginning of moving on. 

How do I deal with this one?

I'm still having some major problems with my heart and possibly kidneys (hoping it was a lab error) so have been seeing doctors basically on a daily basis which is getting tiring but also making miserable because I keep getting bad news.  I'm really at a point that I can't take care of my kids properly which really makes me mad.  I've had to depend on friends, my parents and our babysitter....which for me is really a lot of dependency and makes me feel like such an invalid but there isn't anything I can do about that right now.
Anyways, when I went to see my doctor on Monday she informed me that my Lupus is now considered severe and that my life expectancy is shorter than it should be.  I understand it is important to be upfront but to tell a 34 year old mother and wife it really took me by surprise.  Because of this, they have taken me off of all of the "high risk meds" since they aren't working and have just left me on super high doses of prednisone until I see the cardiologist and the kidney results come back next week.   I plan on fighting this and know that I will probably end up back on a high risk med but until then I'm stuck in limbo and the bad news better turn around to good news soon.
I feel guilty for all of my friends and family who have to deal with this.  My 81 year old grandmother is fighting cancer so I feel guilty that my mom has to worry about both of us.  My husband's best friend is still not doing well so I worry about the stress of all of this on him.  My kids are so young but old enough to know that something isn't right with mommy which makes it even harder.  I just don't know how to wrap my head/heart around all of this especially since I still feel so lousy.  I guess it will all work out in the end but being in limbo really sucks!!!!!  I'm really trying to convince my body to listen to my head and heal itself but so far it isn't working but positive thinking never killed anyone so it is worth a shot, right?

Freedom for my kids

While I was in the hospital, my husband did everything he could to keep the house under control but now that I am back, I am learning some of the things that happened while I was gone.  This is in no way a critism against him at all but things that made me laugh and shows what truly is important in life.

1.  Not a single bathroom had toilet paper in it, everyone used tissues
2.  My children had not been bathed from Monday night until Sunday morning, when I forced him to bathe them.
3.  I'm lucky if there teeth were brushed once a day
4.  I have forts all over my house
5.  My husband has taught them some games that I would never in a million years have thought of but they truly love to play now.
6.  Both of my children are in pre-K but neither of them made it to school the entire week I was gone.
7.  My 5 year old daughter did her hair by herself because Daddy just couldn't figure it out.
8.  I don't think a fruit or vegetable wasn't eaten the entire time I was gone
9.  Daddy brought out toys like their bounce house and power wheels to play with which usually don't get brought out by me
10.  They all survived and are no worse for it.  They may be a bit clingier and cuddlier but that is OK with me.

I'm very blessed to have such a great husband who ran around like a maniac cleaning up the best he could so that I wouldn't be stressed out when I got home from the hospital but also to have such a loving, caring father to our children.

Just out of hospital

Well, my body couldn't fight what was going on and I just spent the past 4 days in the hosptial dealing with pericarditis or mild congestive heart failure.  My ekg and echo was showing inconclusive data so I need to followup with a cardiologist in a week.  In the meantime, I am on my heavy duty prednisone and hoping that the oral prednisone is enough to keep me out of the hospital.  Along with that, my hepatic function is a bit off so I need to followup with my rheumatologist on Tuesday.  I really hope that everything turns out as minor as it can be.  My poor little kids seem to be bouncing back as best as they can.  My 4 year old is definitely a bit clingier than normal but that is OK while my 5 year old seems to be doing fine now that I am home.
My poor husband is still a nervous wreck especially since his best friend is still in the hosptial so combining that with me being on the cardiac floor has made him a bit neurotic.  Once again, my wonderful friends came through for me and my family.  I hope one day that I can repay them for all that they have done for me.  I truly am blessed with wonderful friends and family.

Please let my body fight this.

Well, after a few weeks of feeling great, I feel like I am going down a slippery slope again.  I woke with a sore throat last week and figured I was getting a cold but unfortunately today, I woke with shortness of breath and chest pain.  I really hope that my body can fight this off.  I'm assuming that it is related to the cold but will probably know for sure by tomorrow and then I will either need to call the doctor or let it run its course.  I'm so upset because I was feeling good and really getting some great family time and now all I can do today is sit and watch the kids play. 

Here we go again

As you read in my last post, a dear friend of mine and my husband's best friend suffered a massive heart attack last week.  My husband really wanted to be close to her family to help out as much as we could so we took the 5 hour drive up to visit them.  While there, we found out that she was found unconscience and then suffered a massive heart attack in the ambulance.  They are not sure what caused it but she does have some brain damage and her organs are in really bad shape.  C was not able to visit with her because of her current status so we went over to her house and had our children play with her daughter for 3-4 hours.  This was great for her daughter but it now has my children fearful that something is going to happen to me.
They know that I am not healthy and to hear that another mommy is in the hospital really scares my daughter.  I hadn't really had to deal with all of the questions lately because I have been stable but they are all back now and I am trying to be as delicate as possible with her while still being honest.  It is so difficult sometimes to know what to say and what not to say at their ages; they are 4 & 5.  Our friend's daughter is only 2 so she misses mommy but doesn't understand what is going on.  I'm not sure which is worse for a child but am so greatful that they are so resilient.

Again, please keep our friend and her family in your thoughts and prayers as they can definitely use them.  Thank you.

Prayers for a dear friend

I am asking everyone to please keep my dear friend Melissa in your thoughts in prayers.  She is the wife and mother of a beautiful little girl.  Melissa suffered a massive heart attack a few days ago and is in critical condition.  Her little girl needs her to pull through as does the rest of her family and friends.

Awesome Weekend

I don't often take the time to write about the good things that happen in my life so I wanted to take the opportunity now.  My family and I had a truly amazing Memorial Day weekend and I am so thankful for that.  About a month ago, my husband and I decided to buy a boat to use on the Great South Bay of Long Island.  My husband grew up on boats and the water, where I grew up about 2 hours from the nearest shoreline so I was a bit apprehensive about buying the boat but it has probably been the best investment we have ever made.  On Saturday the waters were rough so we didn't go out but on Sunday we took the kids to see an airshow with some friends via the boat.  We were on the water from 7am to about 5:30pm and had such a good time.  The Blue Angels flew overhead and my son was in heaven.  Our boat was tied up to our friends boat and we had so much fun talking with them and the kids were going between the boats.  On Monday we figured we would go out for a few hours and ended up being out for 6 hours but it was the most relaxing 6 hours of my life.  This boat is bringing my family back together again; no blackberry, computers, phone or TV, just us.
I was in the sun for all of this time so I kept applying sunscreen in the hopes of protecting myself and I'm not sure that it will work but I was willing to risk it to have such quality time together.  I'm hoping/praying that it will not activate a Lupus flare but to be honest it was sooooooo worth it to me for this weekend.  I will take it very easy this week and not feel guilty about it because of all of the stuff we did this weekend.

My poor husband falls by the wayside.

Over the past few weeks to months my poor husband has fallen by the wayside.  C is the most supportive, loving husband that I could ask for so why do I allow myself to take him for granted.  I make the assumption that he is always going to be there for me and then I neglect him.  I don't think there is anyway that I could be a working mom with my lupus but even if I could he works long,hard hours (with a 3 hour daily commute) so that I am fortunate enough to stay home with L & R.  C never complains when the house is a mess because I am too tired to clean, or we eat take-out for a few days in a row.  He offers to do the laundry and vacuum for me on the weekends so that I can just concentrate on feeling good and taking care of the kids.  C doesn't mind my "steroid" mood changes and has come to expect them along with all of the other wonderful side effects of the meds.
He really is a wonderful man and husband so why do I allow him to fall by the wayside all of the time.  I often feel so spread out by being a mommy, wife, lupus patient, & homemaker that one of them tends to fall off.  Unfortunately, it is C that tends to fall off.  By the time he gets home from work at 7pm, I am so tired from the day that we sit on the couch and talk until I fall asleep by 8.
How do I change this?  How do I change my priorities?  By changing my priorities, what else is going to fall by the wayside?  I guess it makes the most sense to let the house fall by the wayside but we often have people over and I can't have them come into a messy house and with two young children, it can get messy.  I would love to hear comments on how you balance everything because I'm not sure what to do.  I know that things need to change just not sure how.

Loosing my identity

Do any other SAHM's ever go through phases where they feel like they have lost themselves?  I should preface this by saying that I love being a SAHM and feel so fortunate to be able to stay with L & R but there are times when I feel like I have lost myself.  Prior to having children, I was a clinical database builder and was making a nice income and moving up in the company.  Once I had my first child, I realized that I couldn't work full-time as it just wasn't for me.  Now though, they are getting older and need me less and less and I feel like I am just floating in space.  I don't think I will ever go back to work full-time but I'm going through a phase now where I would love to find a nice work from home part-time job.  I depend on my husband for all of our income and if I want to buy him something nice, I'm using "his" money to buy it.  He doesn't look at it this way but I do and I just get lost sometimes in it. 
I would just like something to bring in my own money.  My husband keeps telling me that I can work for him and help him to make more but that isn't the same to me.  He doesn't understand it and I just don't know how to explain it to him.   

Either daring or stupid....not sure which

Well,  I am feeling better so I have decided to attempt to start exercising again.  This is either going to be very dumb on my part or is going to go OK.  Unfortunately, I don't think I am going to know until I start and get underway for a few days.  I am going to try and resume the couch to 5K program today but make sure that I listen to my body.  I really think that if I could shed 10-15 pounds, I would feel better as there would be less weight on my legs, especially my knees and ankles which have arthritis in them.

Let's hope this week marks an improvment and not a backwards slide.

Guilty feelings again

I absolutely hate these feelings of guilt that I am having about my kids right now.  As I wrote the other day that I am having a flare, I feel guilty because my kids aren't understanding it.  They keep asking me to play with them but I just don't have the energy to do anything but survive right now.  I'm very lucky that they are less then a year apart and truly enjoy playing with each other but even they have their limits.  I took them to a movie yesterday and will take them to my daughter's ice show today and then lunch but without having any more energy we will probably come home and watch tv.  It doesn't help that the weather is rainy so I can't even let them go outside and play.  I hope and pray that by tomorrow I will have the energy to take them to the playground and play with some friends.
This just sucks and I hate feeling like my disease is running both my life and my children's lives.

Here we go again

So, I made the mistake of saying out loud that my lupus was quiet and that I was doing awesome.  That all changed on Friday.  Halfway through the day I started with severe pain which was held at bay by percocets but finally by Sunday I started having a hard time breathing so it was off to the ER for me.  It was once again determined that I had swelling around my lungs, heart and other parts of my body.  Back to pain meds and high doses of prednisone I go.
I"m so frustrated by this as I had been doing so good and was even exercising only to be struck down by this now.  I was starting a program called the couch to 5K program and made it through the first week and was so excited to start week #2 but now I am scared to death to try to exercise again.

Lupus Foundation of New England

This is a shameless plug for donations.  My sister has decided to run in the 2010 Falmouth, Massachusetts Road Race.  For those of you that don't know my sister, she doesn't run (just like me) so this is a huge accomplishment and honor.  She has decided to raise money for Lupus and all donations are going to the Lupus Foundation of New England.  If you would like to make a donation the link is http://www.firstgiving.com/erinjodoin
Thank you so much Erin, it means more than you will ever know.

Teeth Pulling

My 5 1/2 year old daughter lost her first tooth yesterday, which was great but do you know how difficult it is to pull a tooth out when your fingers don't work properly.  At times I have a hard time doing buttons, gripping zippers and things like that, so to grip a tiny little tooth was near to impossible. 

Lupus Awareness Month

I just wanted to remind all of the readers that this is Lupus Awareness Month.  You can check out the great site for Awareness at http://www.lupus.org/newsite/pages/lupus-awareness-month.html
Thanks for helping to raise awareness of this lousy disease.  The more people that are made aware of this then the more funding we will be able to get in the hopes of one day finding a cure for Lupus.

Insurance companies suck!!!!!

I'm sure that many of you will be able to relate to this topic.  I am so mad at our insurance company.  Why do we pay so much money each year only to find out it doesn't cover something?  My daughter was diagnosed as a child with mild Asperger's last week.  For those that don't know, it is on the autism spectrum.  I want to get her a second opinion and find a doctor who can help me get her the services that she needs.  I pulled up the child psychologists that are covered by our insurance and there hardly any of them but I did find one so we went last week.  
She didn't interact with my daughter and didn't look at any of the papers that I brought with me but told me that my daughter was just not "bright" and that it was all in my head.  I woud have been fine with this if she had at least spoken to my daughter and looked at her past evaluations.  I left the office royally pissed off and called some autism specialist to see how much thye cost and the appointments range from $1200 all the way up until $5500, and that is with insurance picking up part of it.  Well, I set up an appointment only to get a call today that they don't take our insurance and that it will cost $3000.
How can they not cover something like this?  I am so mad at insurance companies.  These are children that need help and if they don't get help when they are young then they aregoing to cost the insurance companies even more.  This just sucks!!!!

PS...I did end up setting an appointment with the Asperger Center in NY City and am going to pay out of pocket but I really sholdn't have to. 

Can you keep my baby girl in your prayers?

I just found out today that my daughter has a slightly enlarged kidney and that her bladder is not emptying like it should.  We go to see a nephrologist on Thursday but in the meantime, I am very nervous about this.  It has been going on for months and I feel horrible that I didn't do something about it sooner.  She was tested for a UTI in the beginning but nothing came of it and then we just decided to give it time but after 4-5 months we decided to do an ultrasound.   The ultrasound was on Friday and we got the results today.
Of course the first thing that runs through my mind is that she has lupus and it is affecting her kidneys.  This is probably not the case but I am worried sick about what could be causing this.  If everyone reading this could keep her in your prayers, I would really appreciate it.  Thanks.

Don't want to jinx myself but....

I'm kinda afraid to even say this out loud but I actually feel better now then I have in probably 2 years.  I have even started working out and was able to loose 2 pounds.  I'm so happy that things seem to be stabilizing for me and in turn it will mean stabilization for my family also.  I just worry that everytime I seem to make an improvement I get so excited and then I fall backwards...but I guess that is the nature of living with Lupus.

Happy Easter

I just want to wish everyone a Happy Easter today.  We are heading to church and then out to lunch in a bit but so far today has been a great day.   The kids already hunted for their eggs indoors and got to see what was in their baskets.  After church they will get to hunt for the 70 eggs that are hidden outside....Easter Bunny was a little bonkers with the number of eggs.

Happy Easter...may you all have a wonderful day.

What a great doc's apt!!!!

I went yesterday to the dermatologist to figure out what was going on with the blisters along my hairline along with my lovely hair loss and got the best news possible.  The blisters are actually oil deposits and have nothing to do with my lupus, just some type of reaction to something.  They will be easily fixed by medicine and then some removal in a month.  My hair loss is probably due to the lupus and nothing can be done about that but....she did give me some biotin to try which is supposed to help hair and nails and their growth cycle.
I don't think I have ever walked out of a doctor's with such good news...for once nothing is really major and has some easy fixes.  Granted, the hair loss is due to the lupus but at least I know that the blisters are not.  Yeah!!!!!

Please don't let me go bald!!

I have naturally thin hair to begin with but recently it has been getting even thinner and now I have blisters along my hair line and in my hair.  This could be really bad news for my poor hair.  When I was 22 I had a completely bald area in my scalp and then last summer my hair was so thin that I had to wear a wig and I am terriefied that it is going to happen again.  If it does then I will deal with it but I would much prefer to not have to worry about it, especially in the summer.
I know that out of all of the places the lupus could attack, my hair isn't that bad, but for me it is devastating.  I always find that when I do my hair and makeup, I feel better.   To be forced to worry about loosing my hair again really bothers me.  I guess it is time to make a phone call to the dermatologist to see what he says.

Mommy, come play with us!

My two children generally play together very nicely but every so often I hear the words..."Mommy, please come play with us"...to be honest usually I tell them that I will be there in a minute and then they go back to playing with each other and I forget.  I am often too tired to play with them and I am very fortunate that they have each other as it is like a built-in playdate.  Instead, I often take them to other playdates or to fun places like playgrounds, the mall, the movies, restaurants and that sort of thing.  It is much easier for me to take them somewhere then stay home so I do that more often. 
However, I worry that they are going to look back on their childhood and remember that mommy hardly ever played with them.  I don't mind playing games, building things and coloring but playing the imaginary games really tires me out.  It seems counter-intuitive but it is so much easier to take them out.  I really hope that they don't feel like they are missing out on mommy because I am just too tired to play at times.
I really want to be the best mommy that I can be but sometimes, like today, I feel like my best just isn't good enough.

I better be healthy this summer

I just booked a trip to Martha's Vineyard with my best friend and her children and my husband and I are going to St. Lucia for a week also.  I'm so looking forward to this summer and I am scared out of my mind that I am not going to be healthy enough to enjoy it and that I will need to cancel one of my trips.  I'm feeling pretty good right now so I am really excited to start living again after what has seemed like an eternity but it is always in the back of my head as to how long it is going to last.    I believe that my liver is finally back to normal which is awesome.  I will need to be monitored but at least I am out of the danger zone and can actually have a drink if I want one.  I'm not a major drinker but since I was told no alcohol because of my liver, I have been craving a nice frosty beverage....I'm sure the fact that summer is coming is helping that craving.
Well, anyways, I'm babbling now but I'm just so excited to be feeling better and looking forward to what could be an awesome summer.  Lupus, you better stay quiet or I am going to be pissed!!!

Your thoughts please...

I've recently launched my website, http://www.ihaveachronicdisease.com/, and would love some feedback from everyone regarding the site.  Please give me the good, bad and the ugly.  I'd really love to get the message board going with people that have some of the diseases as I think it can be very therapeutic.  Another thing that I would love is to have other people's blogs on the site.  If you are interested in any of this please contact me or leave me a comment here.

Thanks so much.  My major goal is to take what I have been given in life and hopefully help someone else with my experiences.

Obsession or healthy curiousity?

Where do I draw the line between curiousity and an obsession?  My kids seem to be completely engrossed in the idea of heaven and dying.  We are not an overly religious family but do believe in heaven and God and the kids know that when you die your soul goes to heaven but they seem so obsessed with it.  I had a 10 minute conversation with my son yesterday about dying and becoming angels and going to heaven.  they don't seem to have any fear of it just a major curiousity with it.
I worry that they are so curious about it because I am sick.  A friend's grandmother passed away due to cancer so they know if you get really sick you may die and I worry that they are so curious about it because they know that I am sick.  Again, they don't seem afraid of it at all.  I worry about it just because they bring it up at least 1 or 2 times a day.  Anyone else out there with kids that are obsessed with heaven and dying?  When do you begin to worry about the line between curiousity and obsession?

Lupus Survey

Please take their survey about living with Lupus.  The more information we gain about this disease the more likely we will be to find a cure.

http://www.lupusliqueens.org/content.asp?id=297

Being a Burden

Well, I was once again diagnosed with pericarditis but at least this time I am not in the hospital for it since I think we caught it early enough. 
There is something that my husband said that really bothers me.  C and I tell each other everything and we really don't keep secrets from each other so I know that he didn't mean this is a negative way but it has really gotten me thinking. 
He was talking to an aquaintance who is very religious and who has been trying to get C to go to church with him now for awhile.  This aquaintance feels that C needs to go so that the church community can help him with this heavy burden that he is carrying.  Can you guess what that burden is????  Yup, it's me.  It absolutely breaks my heart to think that I am a burden on C.  That was one of my big fears that I had when we were engaged was that I was going to be a burden.
Am I a burden on my family?  When I look deep down inside of me, I don't think that I am.  I think that I am a very productive member of this family aside from when I have surgery or something like pericarditis which kicks my butt. 
Would our family be better without me?  I don't think so but we would all be better without the Lupus but unfortunatley, I can't change this right now.   
Should I be worried what other people think about me?  In my head, I know that I should just worry about what my family and loved ones think but in my heart I do worry about what everyone thinks.  I know this aquaintance is just trying to help C, but to call me a burden really hurts. 
I don't think anyone that is sick is a burden or would choose to be a drain on their family and friends.  Sometimes we just can't help it and need a little extra help but when we can help out we are there for anyone and always do the most that we can.  Often times, I am not asked to help out because friends don't want to add stress to me, so in those cases I usually just find another way to help out and just do it;)

Please, until you live in my family with me, while I live with a chronic illness, don't ever begin to assume that you know what I can or can't do.  For all you knnow, I may be one of the most productive people of society no matter how I feel .  So, please, I beg of you, don't ever call me a burden.

Please Tell Me This Isn't Happening

As I posted last night, I had pain in my right side and now I have pain in my chest.  This is a lovely little pain that whenever I lay down or sit back it hurts and it gets tough to breathe.  In the back of my head, I know that it is probably pericarditis again but am hoping by morning it is better.  I was doing so good with my lupus and feel like I have been whacked in the head by this. 
I wish I knew what caused this and the only thing I can think of is the elimination diet that I was put on.  This is a pretty severe diet and I'm wondering if it was too much for my body to handle all at once and sent it into a flare.  I'm going to be pretty pissed off if that is the case but like most things will Lupus, I will probably never know what is causing this flare. 
Hopefully tomorrow will bring a better day.

Now What?!

It is 2:38 am and I sit here blogging on the computer because I have a pain in my side that is absolutely killing me.  It woke me from my sleep and I'm hoping the 2 tyelnol I just took will kick in soon and help it out so I can go back to bed.  Why can't I just feel good for more than a week?!  I was just getting back to a good place after the surgery and complications and now this.  I'm sure it is just a pulled muscle but it hurts like he!!.
Now, I am going to have to explain to the kids why mommy has yet another booboo and can't run around and play.  Why am I so fragile and why does my body hate me so much?  I'm trying to be good to it and seeing a nutritionist to eat the right things and trying accupuncture to help; yet it keeps betraying me.  I feel like I am so much older than I really am.  What is it going to be like when I actually get older?  Maybe by then I will feel great.  One can home, right?

My story

Each month the Lupus Alliance of America posts a different person's story and this month my story is up.  If anyone is interested in reading it the link is http://www.lupusli.org/content.asp?id=356  There is also a link there that other people can share their stories.  I think it is really important for all of us to share our stories so that other people with Lupus don't feel so alone. 
There have been many times that I have felt so alone and have gone to support groups but just didn't feel like I fit in so joining message boards and reading other's stories helped me so much.  Now it is my turn to reciprocate.

Lupus Advocacy Day

Today is Lupus Advocacy day. On Capitol Hill today many Lupus patients and Doctors are fighting for Lupus funding. If you could all take a minute and contact your congressmen to help in the fight that would be great. Here is a link that makes it very easy to contact your congressmen and I really hope that you will help with Lupus Advocacy just like I did. It literally took me 1 minute to do this.


http://www.capwiz.com/lfa

Loving people while they are here on earth

I just found out that one of my best friends lost her mom yesterday evening and I feel so bad for her.  I can't imagine what it would be like to loose my mom and I'm sure that I would be inconsoloble with my grief.  This got me thinking that I really need to let the people I love know that I love them every day.  Life is so short and can change in an instant without notice.  My friend's mom went to sleep and never woke back up which is so scary since there is absolutely no idea and no chance at all to say good-bye but at least she died in peace and didn't suffer. 
My great-grandfather used to always say "Don't cry when someone dies, cry when a baby is born", meaning that when a baby is born they have to go through all of the hardships of life but when they die they go to a much better place.  I believe in heaven so my belief is that their spirits go there and they don't need to deal with the hardships and suffering of life.  But, we, the people left behind, are the ones that suffer because we miss them.
May all of our loved ones rest in a much better place and give all of your loved ones a hug today as you never know what may happen in an instant.

Contact your Congressmen

Here is a link that makes it very easy to contact your congressmen and I really hope that you will help with Lupus Advocacy just like I did.  It literally took me 1 minute to do this.

http://www.capwiz.com/lfa

Participate in the LFA’s Advocacy Day on Tuesday, March 16

As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16. Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.

Here’s what you can do from home.

Send an email, call, or write your Congressman or Senator.

Raise awareness by sending an ecard

Spread the word on Facebook and Twitter, or through your blog.

Everything you need to know about doing one – or more – of those 3 options above is now available on the LFA’s Advocacy Day landing page.


Remember, we really need you to make your voices heard on Tuesday the 16th.

Website is now finished

Just wanted to let everyone know that my website is now up and live.  there are some minor updates that need to be done but the majority of the site is ready.  Check it out at http://www.ihaveachronicdisease.com/

Elimination Diet---Day 1 completed

Yesterday sucked!!!!  It was the first day in 5 years that I have not had diet soda and let me tell you the exhaustion and headache from lack of caffeine was almost overwhelming.  the urge to order a pizza was so great and it didn't help that the kids kept pressuring me to go to their favorite restaurants for lunch and then for dinner.  they had chicken nuggets while I had a protein bar.  I'm following the diet to a T but I hope it really makes a difference because yesterday I felt awful.

Elimination Diet---Yikes

All I can say about this is..."Oh crap, what did I sign on for?"  I went to see a nutritionist for the first time this morning to see if there was anything nutriotionally that I could do to help my disease; I thought cutting out processed foods and things like that.  Well, we are cutting out a lot more than that.  She pulled up a few articles that suggest doing an elimination diet for Lupus in case there is a food causing some of the problems so we decided that it was probably in my best interest to give it a shot. 
For the next two weeks, I can not eat any grains, processed foods, dairy, citrus or "bad" fats.  This basically cuts out my entire normal diet.  I also have to give up my dearly loved diet soda (so, I'm binging on it all today).  After the two weeks, I should feel better and then I can slowly introduce things back into my diet.  It is very similar to how babies are introduced to new foods.
I'm very excited about it because this may be very good for me but also a bit nervous about what the next 2 weeks are going to be like.  If anyone has done this, please let me know as I would love suggestions.
                                              

A month ago today!!!

This time last month, I was told that I had liver damage due to all of the medications that I take to control my lupus, depression and anxiety.  Because of the damage I had to halve some of my medications and cut out the rest of them until my liver function returned to the normal range.  Fortunately, it returned to normal and I have started reintroducing some of the meds but others have had to stay at half the dosage.  This was very scary for me as I never had this problem before and didn't know what the future held for me.
Because of the reduction in meds, I started looking into other more natural approaches.  One thing I did was make an appointment with a nutrionist (which is tomorrow) and the other was to start using essential oils.  After 2 weeks of using the oils, I no longer need one of the anxiety medications and I sleep beautifully.  I was so skeptical about them but figured it was worth a shot and it seems to be working.  I'm not 100% it isn't just psychological but even if it is, I don't care; it is helping.
Over this past month, I've learned that sometimes natural remedies (when used under guidance and correctly) can really help out and aid in the treatment of my disease.  Do I think it is going to cure me?  Definitely not, but do I think it can help me...yup!

What a gorgeous day!!!

It has been a very long winter here on Long Island and today was a beautiful day.  It was 63 and sunny with hardly any wind.  R and I went to the zoo with some friends and after picking L up from school, I was able to get the kids outside so that they could ride their bikes in the neighborhood while I sat with our dog and now they are playing in our backyard.  I absolutely love days like this when they can have so much fun without it exhausting me.

Here's hoping to many more days like today.

After 7+ years of marriage

We are finally getting a bedroom set delivered today.  C and I have lived together for 11 years and first slept together in a twin bed, then moved to a double and finally to our current king mattress.  The whole time though we have used the same furniture that I had while living at home in high school.  We bought furniture for the house, for the kids but whenever we got money for furniture we always just put it to another room in the house.  Finally, on Valentine's Day, C gave me a wonderful gift of a new bedroom set.  I can't believe that after 14+ years of being together we are finally going to be able to sleep in a beautiful bedroom.

Sometimes it is this little things that can make a world of difference.

Thanks C for this wonderful present...I love you very much.

But, you look great!

Living with a chronic, invisible disease can be so difficult at times.  What I mean by an invisible disease is that there are many diseases where the person looks wonderful even though they feel awful.  For example, because of my lupus I have a rash that runs over my cheeks and nose.  The redder it is usually means that I am feeling lousy, however, everyone compliments me on what beautiful skin I have.  I guess I should look on the bright side and take the compliment and know that at least I look good but sometimes I wish the way I look would match the way that I feel.
Lots of times I feel like no one believes me or that I am a wimp when it comes to my health because I don't look sick.  Everyone means well by telling me that I look great but sometimes I wish that I didn't look great so that I would feel "permited" to whine about how lousy I feel. 

Being in two places at one time?

How do I manage this?  Unfortunately, I don't have any family that lives close by and my husband is gone 7am-7pm with work and traveling into the city so it is me and the kids together 24/7.  I really don't mind until one of them has something at school that is the same time as the other one.  A perfect example was that my daughter had a skating show at 10:30am but I needed to pick my son up from school at 11am and just couldn't logistically do it so I didn't make it to the skating show.  L pointed out that she was the only one that didn't have family there....insert major mommy guilt.  I was asked to come and read in R's class but couldn't do it because it was one of the days that L didn't have school and I couldn't bring her with me.  
How do working moms do this?  How do other moms do this?  Anyone have good suggestions about how to handle this?  I try to balance them off and switch off who gets me for the holidays and sometimes the times work out but most of the time they don't.  Sometimes C can work from home so that I can go to a show while he picks the other child up from school but this doesn't happen too often.  It would be so great if I could clone myself; I'm sure that I am not the only mom that feels this way;)

March 1st

Yeah!!!!!  It is March which means that spring is just around the corner.  I'm so excited.  It has also been exactly 1 month since my surgery and I finally feel like the recovery is moving along the way it is supposed to.  I feel like I can almost keep up with the kids again and that my energy is recovering.  My bladder is starting to behave again and my infection is gone.  My liver functions are returning to normal and I was able to start my main lupus med to keep my lupus at bay.  I'm super optimistic that I have turned the corner and that March is going to bring good health and the return of a healthy mommy.
Can you tell that I have spring fever?

Snow Day

Today, we got another snowstorm and are stranded in the house for yet another day.  I'm still recovering from the surgery so trying to find some fun things to do with a 4 & 5 year old can sometimes be difficult.  However, today, I think we had a pretty creative day and thought I would share what we did so that if there are any other home-bound days we can still have fun.

1.  Sent the kids out in the snow in the backyard and watched them sled down a very very small hill from the warm comforts of my kitchen.
2.  I had picked up some little statues from Michael's so we spent about an hour painting them today
3.  A nice warm bath with toys that we hardly ever play with
4.  A family movie, cuddle time
5.  Playing Wii
6.  Coloring
7.  Playing with toys that had been stowed away for days just like this
8.  Putting on a puppet show

Considering the kids were up at 5:30am and it is now almost 5:00pm and they have only watched a few hours of TV, I feel like today was a success...but, man, am I tired!!!

Kindergarten Registration

I can't believe that I am going to register my little girl for Kindergarten today.  It seems like only yesterday I found out that I was pregnant with her and praying that she would survive the pregnancy and now I am registering her to go to school.  Where has the time gone?  5 years have flown by in the blink of an eye and it seems like I can hardly remember any of it.  She is a happy, adjusted child that is caring, sensitive and loving so I guess somewhere along the 5 years, we did a good job.  Part of me is looking forward to having some time to myself to rest but part of me wants her to stay with me.  I know it will be good for both of us to have some time apart and the rest will allow me to rejuvenate and have more energy for both of my children but it still makes me sad.  L, on the other hand, is super excited for big-girl school; which is the way it should be.

Mind over matter

I was talking to a friend yesterday about mind over matter and how sometimes the placebo effect can really help with certain things.   I truly believe it can.  I ordered some essential oils to see if they can help me with the unending fatigue and depresseion of living with a chronic disease and I'm not sure if they are going to work or not but figure they can't hurt (did get a doctor's approval).  Even if they work due to me thinking they work, that  is fine with me. 
All of this positive thinking has gotten me into a great mood today.  I got up, showered, did my hair and makeup and it is amazing how doing these little things can help your mood and in turn your physical body.  Granted, I'm still exhausted and in pain but my emotional well being is better.  I have an apt today with my surgeon and I'm determined that it will go well and I just hope that my optimistic bubble will not be burst today.
Please.... Let me just have one day full of good things;)

Sometimes Lupus isn't that bad....

My daughter noticed that I wasn't feeling great today and she came up to me and said "Mommy please let me give you a massage and help you feel better".  I proceeded to lean down and let her massage my head for me and I have to be honest, it really felt better afterwards.  The look on her face of pure satisfaction that just rubbing my head made me feel better was priceless.  I'm not sure what it was but it definitely took the pain away for a bit and it made me smile to see the kindness in her eyes.  Sometimes, I am grateful for my illness as it gives me a deeper insight into the true kindness of people, including my children.  My children may not know this empathy if it wasn't for my lupus so for that I should be thankful as in the long run it will make them compassionate, caring, kind adults.

WooHoo

I'm so excited!!!!!  I must be feeling better because I just booked a trip for my husband and I to St. Lucia for August.  I do feel bad going without the kids but feel that my husband and I need this time to reconnect.  C and I have been through so much over the past few years between him switching jobs recently and all of my health problems that we have really lost touch with each other.  We still love each other very much but have turned into roommates so hopefully a week trip to St. Lucia will help us.  I know that we need this for us to help us "survivive" but I can't believe we are leaving the kids for a whole week.  They will be in great hands with my parents but can't believe we are doing it.  I'm very excited but also very nervous to leave them for so long.  However, I've learned that I give all that I have to my children and often C gets forgotten along with myself so this will be a much needed reconnection. Don't they always say that a Happy Mommy makes for a happy house;)

What to do when sleep just won't come?

It is now 2:59am and I can not sleep to save my life right now.  I'm cuddled up on the couch with my dog and the Winter Olympics and getting so annoyed with everything because I can't sleep.  I can hardly keep my eyes open but as soon as they close my mind starts working and prevents me from drifting off into sleep.  So, instead of getting annoyed I thought I would make a list of things that usually help me to fall asleep that I have tried tonight that are not working.
1.  Just getting into bed---no way that was going to work today
2.  Cuddling with my dog---doing that but sleep is still not coming
3.  Reading a book---tried that and after an hour I just got a head ache
4.  Watching a little tv---not working yet
5.  Watching the TV show Dexter---for some reason no matter what this always puts me to sleep but it didn't work this time

At this point, my son is going to be up in 2 hours so not sure what else I should try to do.  If I run a bath, which I know would help, I think it would wake my son up since he is such a light sleeper.  Warm milk just makes me gag and I'd love to take a Tylenol PM or something like that but because of my liver damage I'm not allowed to.  Ugh, I have no clue how insomniacs do it. 
This just sucks and my heart goes out to insomniacs all over the world.

Whiny Post

So, I'm just going to write a quick post about being sick so this is a bit of a whiny post.  Not only am I still recoving from the surgery, which is taken longer than expected, but now I have started to throw up.  I HATE vomitting....I don't think there is anything worse than that.  I'm sure that there is but I would rather do almost anything but that.  I'm not sure what brought it on since I don't know anyone that is sick but hopefully it is not the start of the a stomach bug in our house!!!!!