The Other Side of the Butterfly - Lupus Blog

Some People Suck

2009-01-10T18:56:00.000-08:00

This month my son's class are going to science camp. I signed up to go. I've been looking forward to this. A LOT. Unfortunately, the insurance company decided to finally cooperate and I scheduled to have the scope of my esophagus and stomach done. The day after they leave. So I can't go.

I talked to the teacher on Monday and she was very understanding. Unfortunately some of the parents aren't. Some of the parents know whats going on. The ones that know are understanding. The ones that don't are very upset that I've backed out. I had one woman tell me I needed to just reschedule that my kids are more important.

Yeah my kids are more important, however I think me trying to do whatever I can to stay as healthy as long as I can is more important than a freaking camping trip.

Its not like there aren't enough parents going. There are more than enough.

Limits

2008-10-14T10:52:00.000-07:00

I have 3 kids. 3 kids that don't understand that 2 years ago mommy could go outside and play with them, and now I have days I can hardly walk.

These same 3 kids are also keeping me from setting limits, or using them to get out of doing things.

Last weekend we spend all day Sunday with some friends of ours and their kids. Lots of walking, standing, and sun.

I had all sorts of excuses for getting out of going, but the kids were so excited and I couldn't bring myself to use them.

I spent 2 days recovering from it, but thats a price I am learning to pay.

I can't let the pain or the fatigue from allowing me to live my life and be a cool mom to my kids.

My sweet little boy

2008-09-10T14:03:00.000-07:00

Last night Robbie gave me this necklace. He told me he saw it at Target and asked D if he could get it for me. (a butterfly is used on many lupus websites, posters, and such).

He told me he knows it won't make me better, but it might make me feel better.

Then he asked me what it feels like to have lupus. He then told me he wanted the truth and not to lie to me.

I tried to find a way to explain it that he'd understand, but wouldn't be able to over think it and make it sound worse than what it is.

I told him to remember the last time he bruised his knee. I told him that all of my joints feel like that. My ankles, my knees, my elbows, and my shoulders. He asked about my neck. I told him that it feels weird. That it hurts and showed him where. I told him it kind of feels like when his sister punch his arm, its just in my neck. Then he asked why I turn red. I told him that's from the sun, that if he looks closely there's a lot of little blister type bumps on my arm. I asked him if he remembered when he had poison oak. I told him that it feels like that, but instead of being caused by a plant its caused by the sun. That's why I have long sleeves on most of the time, or an umbrella with me when we are outside.

I told him the medicines I'm on are helping me, even though it doesn't seem like it. Its just going to take a while for them to fully help me (most things I have read say a year or more). And that we are trying to find out whats going on with my neck. I told him that they may have to cut my neck open and remove one of the lymph nodes so they can find out whats going on. He thought that was kind of cool and asked if he could see the stitches when they do it.

He hadn't said anything, so I didn't realize that he was convinced I was going to die from this.

I think our conversation last night helped a lot. He seemed a bit more upbeat this morning and didn't seem like an act like I've noticed the past month or so.

MIA

2008-09-09T09:45:00.000-07:00

Sorry about so long between postings. Between getting ready to move and then moving, life got a little hectic. Then we didn't have internet for over a month.

Now its going to take me a while to recover from all this.

Aug 27th I had a ct scan done of my chest. Both my regular doctor and my rheumy wanted to check the lymph nodes in my chest. Since the ones in my neck are so swollen and have been for months, they want to see what those look like.

My rheumy is talking about doing a biopsy no matter what the results from the scan say. UGH! I'm still seeing my rheumy from Southern CA because I haven't found one up here just yet. Plus I'm nervous switching doctors in the middle of all this.

I promise to update more often. Now that things are finally settling down I will have a bit more time.

The Starr Bar

2008-07-12T12:38:00.000-07:00

My sister sent me this. I'm trying to pass it on to everyone I know.

As many of you know, I was diagnosed with Lupus and Scleroderma in March.

The Starr Bar is made by Body Balms. 50% of every Starr Bar purchased will go to The Scleroderma Foundation.

Insurance Companies

2008-07-10T16:52:00.000-07:00

I hate insurance companies. The one we used to have wasn't to bad, expect when I racked up $15,000 in less then 4 months. They weren't to happy about that.

This new one, well wait, we don't have insurance yet. Why you ask? Because they won't input our info into the computer. Its been over a week. I've been calling every day so I can get our info so I can A. get my meds. B. schedule my ct scan. C. I have appointment with rheumatologist on Tuesday.

Called again today and still haven't gotten our info into the computer. THAT meant going and paying full price for my meds. Thankfully I can wait another week with 3 of them, so just the wellbutrin today, $46.

Not only are they taking their sweet time with this, we also have a $1500 copay plus a $30 co pay. I am NOT happy about this.

I'm trying to find a different insurance company, decent one that we can get without going through a company.

I'm ready to start crying because I'm so frustrated and angry about all of this.

Amazing Glowing Woman

2008-06-18T16:55:00.000-07:00

I'm almost sure that I'm going to start glowing in the near future.

I went today for the latest round of test results. The scans I had done show that the lymph nodes in my neck are swollen, right worse than the left. The right is the side that I have the occasional bulge.

There's no masses or cysts, which is good. But that means that there is something else causing them to swell. So she ordered another ct scan, this time of my chest. She wants to check the lymph nodes there to see if they are swollen.

She also ordered a bunch of blood tests. Checking for anything that might cause the lymph nodes to swell.

At this point I'm all for a full body scan. Scan everything at once, get it all over with and then figure out what else is wrong with me.

Jazzy yelled at me this morning. She had a bad dream last night and came and climbed in bed with us. Well sometime during the night the wrist braces must have been bugging me because I took them off in my sleep.

Jazzy woke me up to yell at me for not having them on. She was very upset with me and telling me if I didn't leave them on then the doctors were going to have to cut my hands off and then what kind of mom would I be without hands????

Its bad when they start using your own threats against you.

What my Life with Scleroderma is Like:

2008-06-03T20:53:00.000-07:00

I found this and thought I'd share it here too.

What my Life with Scleroderma is Like:

MY PAIN - My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.

MY FATIGUE - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

MY FORGETFULNESS - Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

MY CLUMSINESS - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

MY DEPRESSION - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

MY STRESS - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. I may very well be overwhelmed with stress. Everyday stresses make my symptoms worse and can incapacitate me completely.

MY WEIGHT - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.

MY NEED FOR THERAPY - If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charlie horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.

MY GOOD DAYS - If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.

MY UNIQUENESS - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, so when you see someone at the store who gets out of the HANDICAPPED space and they look fine -- DO NOT JUDGE THEM as YOU may not know THEIR inner PAIN.

My own little pharmacy

2008-06-03T11:20:00.001-07:00

I added 2 more things to my own little pharmacy.

I had appointment with my rheumy today. He gave me prescriptions for Wellbutrin.

Also for Zomig to help with my headaches.

He also gave me a prescription for braces for my wrists. I'm having problems with my hands being tingly, but its even worse when I sleep. He told me that its like symptoms of carpel tunnel, but its from the inflammation in my joins from the lupus.

He's going to make some calls and see if he can get the name of a rheumatologist around where we are moving to, but he wants to make sure that they know what Scleroderma is and know enough about it to know what to watch for.

So until then I am sticking with him. I like him anyway, he actually listens and asks questions rather than expecting me to tell him all my symptoms (because I forget half of them or think off the wall things are nothing).

Are we back to normal?

2008-06-01T16:22:00.000-07:00

Hi, my name is Samantha. I'm the same person now that I was a year ago. Even 6 months ago. I was sick then. I had my good days, well they were very very rare back then, and my horrible days.

The only difference now is I know whats wrong with me. I can put a name to it.

I'm learning that its not me being sick that freaks people out. Its those names. Lupus. Scleroderma.

Yesterday the husband graduated from school. Great times. Last night about 15 of us went out to Chili's for dinner and drinks. Really great times. Its the first time the 15 of us have been together in the last 6 months and they haven't totally clammed up and acted like I was sick.

We were able to have good conversations. Lots of laughs. Everyone relaxed. No one awkward silences of people trying to find the things to say. Maybe things will go back to normal?

Scary

2008-05-21T09:13:00.000-07:00

Today, just getting dressed made me so put of breath that I felt like I'd never be able to breath normally again. I've never had this happen before. All I did was get dressed.

This is another thing added to my list to talk to my rheumatologist about.

Overwhelming

2008-05-09T18:00:00.000-07:00

I starting to become overwhelmed. Everything has finally sunk in. I've worked through most of my fears. I have a few that still creep up on me now and then, but not as bad as it was.

Now my mind is racing to everything thats to come. All the tests I will need, all the different doctors. Not to mention having to deal with insurance companies.

Moving in a couple of months is going to mean new insurance. Which means having to fight about the whole pre existing condition and all. New deductibles. SO I'm hoping to get as much down between now and August 1 as I can. This is one thing I'm going to bring up with my rheumatologist when I see him in a couple weeks.

Then I think about the future. I love being a SAHM but I also would like to help with finances. When we move I'm going to go back to school to get a degree in photography. I am going to do as much as I can online so I don't have to worry about having to drag myself to a class when I feel horrible. I can feel horrible in the privacy of my own home.

I know I need to take one day at a time, but its hard when you have young kids. Not to mention everything is going to be up in the air in a couple of months until we can get settled again.

Another CT Scan

2008-05-06T11:52:00.000-07:00

I went in to get the results of the latest round of tests on my thyroid. Which is still only 1 point off so both her and the endocrinologist want to wait and see.

Since the prednisone doesn't seem to be helping much as far as the large lump in my neck, she ordered a soft tissue ct scan just to make sure there isn't something else going on in my neck. Oh joy.

Thankfully I haven't gained anymore weight, but I haven't lost any either. Not to bad. I would have like to have lost some, but I am happy with a maintain.

walking = pain

2008-05-02T12:18:00.000-07:00

We are back home now. Even with the alarm I'm nervous, ok, scared, about being here alone. I thought I'd take a walk and see if that would help calm my nerves and make me feel a bit better. I got a block away. 1 block and was in so much pain I wanted to cry. Walking back felt like an eternity.

I hate this. I hate that I can't even walk a block. After we move I'm going to look into water aerobics. That seems to be the only time I can do things without being in lots of pain.

I can work up my resistance and all that and then graduate to being on land.

Prednisone Evilness

2008-04-28T08:14:00.000-07:00

This past week I've been feeling especially crappy, and I thought it might just have been because I've been dealing with sick kids, and all that. Thursday I was feeling a bit better and Friday I woke up with horrible pain in my neck. If that wasn't bad enough I also look like I'm growing a 2nd head. My lymph nodes are so swollen that I have a large bulge in my neck. I called the rheumatologist figuring he'd want me to come in so he could see for himself, but he just made me an appointment for Wed and called in a prescription for prednisone.

I haven't been on prednisone in years. I remember the weight gain and all that but I don't remember having insominia and restlessness back then. Me and no sleep aren't a good combitation. I get cranky and grouchy, but not just that. I causes me to feel really bad too.

Although its better for me to feel this way this week instead of next week. Next week I have field trip with my son's class, and then the following week I'm going on field trip with one of the 1st grade classes to the zoo.

Not do so much?

2008-04-14T13:03:00.000-07:00

How does a person learn not to do so much at once? The minute I start feeling good I try to do as much as I can. Try to catch up on things that I haven't felt good enough to do.

How does one change that?

I've always been an active person. Growing up it was softball, soccer, basketball, and always out with friends. Once I had kids it was taking them to the park, playing kickball outside with them. Now I can barely drag myself outside to watch them let alone get up and play with them.

I've always been the type that gets up and cleans before kids get up, and am cleaning things a few times a day. Now I'm lucky if it gets done every other day.

So on my rare good days I feel/want to get things done that day so I don't feel so bad that I've been slacking on everything the rest of the time.

I need to learn to just relax and enjoy the good days, but its hard to change.

Hot day

2008-04-13T21:54:00.000-07:00

According to my car thermometer at 11 AM it was 106. I think its a bit off but either way it was hot today. HOT = lazy day. It was so hot outside and in that not much got done today.

Plus I need to realize I can't try to do everything in one day. Good days are awesome, but I end up trying to get so much done that I pay for it the next day.

The kids go back to school tomorrow. WOOHOOO!!!! I can go back to taking a morning nap. LOL, not really, but I can at least relax some during the day while they are at school.

Fears

2008-04-12T22:15:00.000-07:00

OK before anyone says anything, I *know* I'm not going to die tomorrow. I *know* I shouldn't be stressing about this. I *know* that people with Lupus can live a normal live.

I know all this, but it doesn't change the fact that I'm still in the acceptance stage of all this. I not only have Lupus, but I also have Scleroderma. I can handle one or the other, but having both of them is a lot for one person to deal with.

Ever since I was little I've had a fear of suffering before I die. I'm not scared to die, I'm scared of whats leading up to it. Make sense? Watching my dad, my grandpa, and my stepdad suffer before they died only made the fear worse.

The other night I started freaking out because there is a huge possiblity that I may suffer. No matter how hard I tried I couldn't get my mind to think of anything else. I tried playing game with the kids, tried a hot bath, tried reading. Nothing would shut my mind off of it. It took D coming home and holding me while I cried and freaked out about everything to make me feel better. I just needed to get it all out without someone telling me I was being irrational or I needed to stop stressing about it.

Slacking

2008-04-12T15:28:00.000-07:00

I know I've been slacking with this, and I apologize. I've been having a hard time dealing with things and well my so called friends weren't helping.

I had a small break down and it seemed to be just what I needed.

Today has been a good day so far. I ran some errands, did some cleaning. Next on my list is grocery shopping.

I was hoping that we could take the kids to the Rancho Los Cerritos today but its so hot and I'm not in the mood to deal with the heat.

Test of Friendship

2008-04-02T21:16:00.000-07:00

Sucks that it takes something like this to learn who your true friends are. Guess its better to find out now rather than later, but at the same time I need all the support I can get.

They've seen my arms, they've seen the bruises from the blood tests. They've seen my bad days where I can barely get out of bet let alone walk 3 blocks to pick the kids up from school. They've seen me cry from the constant pain. They've seen me go from a person that is always up and moving to someone who can barely get up.

They weren't afraid of me then, they were by my side through all of that. Now that we know what is wrong with me, they want to run away like a little child. Screw that. I don't need any of them in my life if they can't be big enough to be there to support me.

Sinking in

2008-04-02T09:19:00.000-07:00

Everything is really starting to sink in. The numb feeling wore off Friday night and I started sobbing uncontrollably. I can say now that I am really, really scared.

I'm so sick of people telling me I need to be strong for my kids. I know I need to stay positive, and strong but I am allowed to be freaked out too. Having kids doesn't change what I am going through physically and emotionally, and I wish people would realize that. I pretend to be ok when they are around, but when they aren't I'm entitled to be freaked out and depressed.

Lupus AND "CREST" Syndrome

2008-03-25T17:26:00.000-07:00

Well I just got back from the rheumatologist. On top of having Lupus, I also have CREST syndrome (limited scleroderma). I have to go back in 2 months and he will order a bunch of tests (echocardiogram, scope of my esophagus, all that good stuff) to see how everything is and then continue to monitor everything afterwards. I swear I'm a freaking mess!

Thyroid tests

2008-03-21T19:29:00.000-07:00

I had an appointment with my normal doctor on Tuesday to go over results of the ultrasound I had on my thyroid. I had one in Nov and then again the end of Feb. There is some different in the size (enlarged) but not enough to be concerned yet. SO more blood tests were ordered to check function levels and all that. Then possibly add yet another doctor to my growing list. WOOHOO!

Let me start by saying hello!

2008-03-20T14:08:00.000-07:00

Hi! How are you? Some of you probably already know me from Dragonfly Kisses and Butterfly Zoos, but for those that don't - I'm a 28 yr old mother of 3. The boy is 3 and the twin girls are 5 1/2. The husband and I have been married for 3 almost 4 years. The kids are from a previous marriage (I married the spawn of satan the first time around).

I was just recently diagnosed with Lupus. Recently as in the beginning of this month (March). Only took 3 doctors and about 5 months of testing to finally figure out what it is. This is going to sound crazy to most people, but I was so happy to hear I had Lupus. I was glad I had a diagnosis and I wasn't going crazy. Not to mention I could stop being a lab rat and begin a treatment to get better.

I've been on Plaquinel for 3 weeks now and let me tell you at first I was wondering if it would ever make me feel better. I was still feeling horrible and then had the added side effects. Let me tell you, for a while there I couldn't figure out what was worse, the side effects or not being able to drag myself out of bed.

I have my good days, but bad days still win. I've had to teach myself that its ok to stop and lay down and watch some TV, read a book, or even take a nap during the day. It only took me about 8 months to convince myself this. I used to be the type of person that is always up doing something, cleaning and re cleaning the house, outside in flower beds, or out to lunch with friends.

For a long time I blew it off as stress, but then I realized that I didn't have anything to be stressed out. Thats when I gave in to see the doctor the first time. She blew it off as me being depressed but ran blood tests to humor me. When those came back normal she pretty much blew me off all together.

SO I gave up on doctors for a while. Then I got to where I could barely get out of bed so I called and scheduled an appointment with another doctor. He pretty much told me I was a hypochondriac looking for attention.

I wasn't going to accept his answer so I called the nurse at my daughter's cardiologist office and asked if she could give me the name of a good doctor. She did better than that. She called herself to set up an appointment for me so I could get in faster than if I called myself. I was in in less than a week!

This doctor was great asked all sorts of questions, ruled out depression right away. Then the blood work started. LOTS of it. Then came the rheumatologist referal. Then he ran more blood tests, and sent blood to UCLA so they could test it. Now here we are today.

I hope I haven't bored you to tears with this, and I hope you'll come back to visit me soon!