Wednesday, July 28, 2010

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.

Tuesday, July 27, 2010

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.

Sunday, July 25, 2010

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.

Saturday, July 24, 2010

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.

Wednesday, July 21, 2010

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.

Tuesday, July 20, 2010

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.

Sunday, July 18, 2010

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.

Saturday, July 17, 2010

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.

Friday, July 16, 2010

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.

Wednesday, July 14, 2010

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, this version was composed by somebody called Cynner and should be attributed to a Mr B Siviter at http:// 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!!!!

Monday, July 12, 2010

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.

Friday, July 9, 2010

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.

Tuesday, July 6, 2010

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.

Monday, July 5, 2010

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.

Saturday, July 3, 2010

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.

Friday, July 2, 2010

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.