It’s been awhile since an update. So here it goes. The flare seems to have leveled off. In the mean time I have been seeing an ob/gyn for other issues and recently had surgery to check out what’s going on and at the same time they did a tubal ligation. The reason I am telling you this is because the doctor found nothing… which means he gave me the answer to all my problems:

It must be Lupus.

I could SCREAM. I am SO sick and tired of this. I would like to go to a doctor and not tell him my medical history so they can actually trouble shoot instead of look once and assume. I know- I am making a claim against the doctor that he didn’t do fully do his job, however, I have been dealing with so much that it seems everyone blames Lupus. Lupus is like a terrible hang nail that you can’t get rid of… Your knee hurts? Oh it’s just that hang nail… your neck hurts? It’s that hang nail, sorry can’t help you. I am so terribly frustrated. I am fed up and done. I am ready to stop complaining, everything is Lupus related and no one can help or really cares.

Wow- that was a lot to poor out, but I guess I needed to say it. The bottom line is that it sucks to have it all blamed on Lupus.
I hope to stop my birth control which should help with the hormones, and I am hoping it lessens the flares I have in relation to the hormones. And I am now debating a break from the Lyrica. As I have said before, Lyrica can block your body’s ability to lose weight and I am gaining weight quickly. I am miserable and unhappy with my current body and I want nothing more for it to be manageable, but it means going off the one drug I feel is working. This is so incredibly complicated and frustrating I just don’t know what to do.

Update

Last night I came home from the Seahawks game. I knew I was going to pay for the weekend I had, I just didn't realized. I got home with head congestion so bad that I couldn't keep my eyes open. I broke down & took some nighquil, but it didn't kick in. I cried the pain was so bad. My whole body ached. Colds suck because it seems to me that they also feel like the flu, achiness, fevers, congestion, sore throat and such.

So when I woke up this morning I still hadn't slepted off the drugs so I opted to stay home from work. I have been miserable ALL day. My only hope is that MAYBE this is what I have been fighting the last couple of months & it has finally come to light so I can go away. So I am now going to shut my computer off cause my head hurts, and I shouldn't have gotten on it to begin with, but you know those withdrawls can really get to you!

Another update

My flare continues. It really sucks. I have been in and out of doctors appointments and nothing. My lymph nodes continue to be swollen and all my labs came back “normal” for me. It may be that I am just getting virus after virus and my body has just not had time to heal. I am so frustrated. I am back to not sleeping and I feel like my chest is going to explode. It is just so annoying.
So I continue to fight, continue to try and rest, continue to live life.

Wick Davis, who rights the Lupus Foundations blog asked that I post this on my blog & I am happy to participate...


50 Years Without a New Lupus Drug! What Does it Mean to You?
Share your stories with Congress and Encourage Researchers to Keep Up Their Effort

Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.

A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.

We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus. At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.

So what does 50 years without a new lupus drug mean to you?

No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.

How can you help? Share your story!

Please help by sending a two part email message to 50years@lupus.org as soon as possible but before November 20.

In the first part of the email, write a short message (about 150 words) that explains to Members of Congress what 50 years without a new lupus drug means to you. In the second part of the email, write a short note of appreciation that explains to researchers and industry executives how grateful you are for their efforts to develop new safe and effective treatments for lupus.

Please include your first and last name and your city and state in your email. If possible (but certainly not required), please also attach to your email a clear photo of yourself so we can personalize your message.

We will use your email message in several ways to help advance the science of lupus!


Deliver your message to Congress.
During the LFA’s Annual Advocacy Day, lupus advocates will deliver your story, and the stories of others, to policy makers in Washington, DC. Be sure to include your name and your city and state in your message so we can deliver your story to your Representative.

Feature selected stories on the LFA website. While we are not able to promise that we can post every message and photo we receive, we will review each one and post as many as possible to our website and in our blog so the public also can learn about the impact of 50 years with no new drug has on people with lupus and their families.

Share your "Thank You" notes with Researchers and Industry Executives.
Today there are hundreds of dedicated researchers and executives from pioneering biotechnology and pharmaceutical companies working hard to advance the science of lupus and to conduct clinical studies of nearly 30 potential new treatments for lupus. We want these individuals to know how much you appreciate their continued focus on lupus.

We Need Your Help Now! Act Today!

Send your message and photo today (or by November 20) to 50years@lupus.org. Then, on Thursday, November 20, visit our website to read the messages and learn how the LFA is taking steps to address this urgent problem.

Ask Others To Get Involved!

Please share this request with others who also have been waiting as long as five decades for a new lupus treatment! Together, we can raise awareness of this issue and urge our elected leaders to provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus.

Jumping for joy (in spirit)

I went to my rhuemy today cause my lymph nodes have been swollen in my neck, upper chest and arm pits so I headed into the doctor in hopes of some solution. Well after dicussing this last flare she stated that this was not a flare, but a viral infection that is going through children. It usually last 24-48 hours but since I have a comprimised immune system, plus medications I have been suffering for weeks. I was SO excited to get this news. Then she did her exam of my lymph nodes, check my ears & looked in my throat- only to see a sign of strep throat- WHAT? I have had no pain in my throat- or at least I don't think my throat hurts- with all the other pain who knows. So my spirits are up, sure there is no medication for a virus, but an answer it what is important. I'd be jumping around singing God's glory except I only have the energy to sing it while sitting down. God is so good. He has gotten me through another battle of my life long war.
YAHOO!

Back to work

I took the last two days of work off in hopes of sleeping off whatever I am fighting. I managed to keep my meals down all day yesterday and fought off the urge for a nap. That forced me to fall asleep early last night, but it was well worth it.

Today I headed back to work & my body is screaming at me to lay down. I ate breakfast ok, but lunch made a revisit. I am really frustrated with this. So it's back to soda crackers.

I got the nerve to ask my SS class for prayer, well at least just emailed the ladies. I didn't realize how encouraging they would be. The responses have come at the perfect time. It is so good to know I have such an amazing group of friends.

Tonight is Wednesday, which means AWANA. My partner in this fabulous ministry has told me I will be sitting down all night doing paperwork, not my favorite thing, but I know I need it, so I am going to accept it and move on. I'm just nervous cause the bathrooms are so far away and if I have to throw up what do I do? Boy oh boy chronic illness is so much fun! I just can't believe all I go through.

I am curious about Lymph Node issues though and of course I can't find much. If you happen to know of any sites that would be good for information please comment. I can feel the lymph nodes in my neck, arm pit, under my breast and by my collar bone and they are swollen and painful. I don't see my doctor for another month and I hate to call her and see if it's a big deal.... I know I should call, but I was hoping to find something online to see if it is something I should worry about.

I hope you are all having a better day than I am :-).

Defeated

I have worked SO hard the last 9 years not to be defeated by Lupus, but this current flare has taken EVERYTHING out of me. I am trying so hard to be positive but it's taking more energy out of me than I care to spend. How do you stay positive in such turmoil.

I haven't been able to eat anything substanial in 5 days, that is really what is wearing me down. I wish I could loose weight when these flares attack my digestive system, but no. If the flare had some bennifits I'd say "bring it on" but it doesn't :-). Anyways, just wanted to keep you updated.

Update

I am tired. Incredibly tired. I am tired of being strong. Tired of hiding my pains and my exhaustion from those around me. No one has asked me to hide them, but I do. I don’t want others to feel sorry for me, or to take “special care” of me. I just want to be treated normally. But I am tired, and I feel that I don’t have the strength to hide my pain anymore. It seems so weird to say, but right now things are bad. I have been flaring for two weeks. Now I feel a cold coming on and life is not slowing down for a couple of days. I refuse to miss Halloween with my son, so that will take most of my energy for the weekend. I’m glad I don’t have many plans on Saturday, but the idea of spending the day in bed is overwhelming sad. I want to be involved in my family’s life. Overall, I’m tired of being strong. Is it okay to let it go? I don’t know, I don’t want pitty, but I want people’s care- does that make sense?

The other big issue is I am having other health issues and I go into a specialist on Tuesday. I am very scared that he is going to take one look at me and say “It’s Lupus”. I may lose it. So stay tuned to see how that goes.

A close co-worker came to me yesterday and told me her daughter was just diagnosis with Lupus. I actually started to cry- which probably scared her a little. But I don’t want another person to have to deal with this, I want to take action, I want to yell from the roof tops that we need to make awareness for this disease as high as we can and stop it. But how do I do that- I am just one person.

Lots of questions, no answers. I emailed the Pacific NW Lupus Foundation to get involved but haven’t heard from them, do I really want to work with a nonprofit that doesn’t communicate with people who are asking to help? They even have Board openings and I would love to know what that would entail. It’s time to make this disease known!

Thanks for listening to my random thoughts.

Another Monday

I went home and was really sick. It’s still two days later and a meal has not stayed where it belong. I just wish I could lose weight when I get like this (LOL). I went back on the one pill that did work for a while, I just hope it kicks back in and soon! I am starting to feel weak from the lack of food in my body, but I can’t help that. How frustrating. Oh well, I think the weekend was well worth the pain.

This week I go in for a pelvic ultrasound. I am really hoping that they discover what is going on with me and my pain. I don’t want them to find nothing and say it’s just Lupus- deal with it. That is so frustrating and heartbreaking. I’ll keep you posted.

not a lot happening this weekend, but I do want you to know that the Lupus walk is this weekend and we would LOOOOOVE for as many people to show up as possible. If you can't make the walk, would you consider donating to our cause?

go to www.firstgiving.com/lewistollefson to join our team or to donate to such an amazing cause!!!

Exhaustion

Have you ever just felt like you were on the verge of collapsing? I feel like that a lot, and I wish I could just give in to the feeling. Today is one of those days. I have been changing my medication. I saw my Rheumy in mid September and was relieve when she took me off the one medication. I was told to give it two weeks and see how I do. I completely forgot all about it, to be honest, I hate taking it, so I was glad to be rid of it. Well without realizing it I came upon the two week window and I became very ill. Everything I ate didn’t stay in my stomach and I hurt, oh how I hurt. Then I realized it- two weeks was up, the medication was fully out of my system. So as my doctor had told me, I started it back up. So here I sit today, medicate and just trying to get through the day. I am holding in there, but sometimes life is just hard.

So now I am struggling with deciding if the side effects are worth the cure. With the one medication I was just told that they found out that 70% of the users learned that their body quit losing weight. That is definitely me, I was wondering why I was gaining and not losing anything. I am good at being able to eat and not gain a ton of weight, so the weight gain was a huge shock to me. So can I deal with going off of it and have the pain, extreme pain that is unmanageable or do I continue to get fat. Why can’t they make medication that doesn’t cause weight gain. Or how about have a pill that has a side effect of weight loss. Ahh I can dream can’t I.

Join us for the Lupus walk next Saturday the 18th, we would love to have TONS of people show up!!

So the struggles continue. I got my blood test results back and I had hoped that my sed rate would go down on the one med, but it hasn't.

Things have just been crappy. I am really starting to feel emotionally drained with all the meds and the side effects. Plus the feelings. the pain. I have a sinus thing going on and I can't take anything for it. this totally sucks. I know I should be blessed to have Lupus, so I can share with others my story, but sometimes I just want to scream. people just don't get it. How do we get the word out about this disease? how do we make people see?

The Breast Cancer three day was this weekend and I a looked at the news story and was jealous that Lupus doesn't get the amount of publicity as other diseases. it's just as bad, but there is no cure. I am so frustrated. I want so much for people to understand me. To not make a bid deal of it.

Thanks for lettingme vent... sometimes it's just good to get it off my chest.

So I had a doctors apt this morning. We went over my pulmonary function test. The good news is the Lupus hasn’t set into my lungs. It does look like I have some asthma so I am getting an inhaler for when I need it…. Yippee. We are going to try and drop the Lupus meds to see if it makes a difference. I won’t know for two weeks if it will matter if I take it or not. I’m kinda glad I don’t have to take it. It’s hard to remember cause I have to take it on an empty stomach. Plus it is so stinking expensive.

The meds for the fibromyalgia are working, but there is one side effect that is terrible. Weight. Apparently 70% of those who take this med cannot lose weight and to make matters worse I have gained 9 pounds in 3 weeks. I am devastated. If this stupid med wasn’t working so well I would go off of it. I am the heaviest I have ever been, it’s so depressing. So what do I do? Keep getting fat and be 90% better than I was a year ago or go off the meds, lose 100 pounds and be in pain and MISERABLE? So frustrating, and losing weight has never been easy for me, so 100 pounds would take a long time. Decisions, decisions.

Nothin new

same old, same old stuff. I feel like crap. Will this ever end? probably not. I'm in the middle of a pretty good flare. My body just aches and aches, the pain is so intense and even the max paid medication isn't taking the sting completely away. Sometimes the flares can be really discouraging and maybe it's my lack of sleep today, maybe not. anyways, I'm keeping up with life, and I hope to have more time to update you soon.

So the GF diet tanked. There is no way in the world I could do this. Breakfast for me is my most important meal…. And I can’t find anything tasty. Oh well. I have decided that I am going to stop trying to fix all these pains and flares and just learned to live with them. I know I can. Lupus and Fibro is just going to have to live in my body while I fight it off and live with it.

This last weekend I over did it, and I knew it. But you know what- I would do it all over again. It was totally worth it. So now I look for ways to make this happen. I struggle with listening to my body. I struggle with not over doing it. I struggle with thinking so many things are worth it, when they are not.

Day Three, Four & Five.

Well day three sort of worked out. Oh who in the WORLD am I kidding. I had pizza for lunch and a graham cracker later that evening. I seriously cannon do this. Saturday & Sunday I managed to get it done. On Saturday I even went to a couple of specialty stores and bought gluten free stuff- but have you TASTED it? I think I may starve to death. I have tried and there is NO way I am going to be able to do this. What was I thinking? I must have been crazy. Oh well, I tried. I decided I was going to “cut back” on the gluten intake. So I will still use brown rice, and rice flour, but I need my bread and my morning cereal. Sorry folks, it aint gonna happen in this lifetime!

Day Two

Ok, so it's day two of my "Diet". I have to say I have already failed one...I had a hamburger last night with bread. I have decided after looking at the list I will probably succeed 90% of the time. Quite a few things I can turn in to Gluten free meals, but there is that occassional want for some bread or need for a quick meal.

Today at lunch I did succeed, I chocked down a corn tortilla on my taco (I am a big fan of flour), but I did it. I should weigh myself and see if I get any results. If I can learn to do this, maybe I can discipline myself to do other diets and loose some weight.

Last night was an interesting one.... We had our softball playoffs. I refuse to let Lupus put me 100% down. I quit bowling and I told my doctor there was NO WAY she was taking softball from me. She was surprised, but I am willing to suffer because of my love for the game. Anyways, we played two games in the heat, I have never done that. God really provided for me. As of last week on 10 ladies were suppose to come, that meant I would be on the field for the ENTIRE two games- something I knew I couldn't do. Well God added an 11th lady to the mix and we were assigned to trade places- it is DEFINATLY a God thing.

Two games was hard on me, at one point I stood behind the plate willing my body to stand up straight. It was probably one of the most physically demanding things I had done. I am paying for it today, but it was totally worth the high of winning those two games.

Day One

Well today I saw my doctor. We are going to do a test on my lungs to see what is going on. That will happen in a week or so. The real thing she told me to do is take gluten and wheat out of my diet…. I KNOW! My jaw dropped too. She said that she rarely suggest a natural solution but this seems to work for some of her patients and at this point we need to try whatever we can to get my lupus & fibro to calm down.
So day one begins. Today is bagel Wednesday, I was going to have a bagel for lunch… but that is a no go. After looking at the list of what I can and can’t eat I realize this may NEVER work for me. How do people do it? I am going to really try, but I know there will be setbacks. I am a picky eater as it is, so to add no gluten to that, you might as well give me an IV for nourishment. So stay tuned. Hopefully I won’t get too cranky.

Lupus Walk

The Annual Mad Hatter Lupus Walk is October 18th. I have set up my fundraising page and I am hoping to raise a ton of funds & get a BIG group of friends & family together for this walk.

You can click here to view my page and you can either support me or create your own fundraising page as part of my team.

I want to win largest team & most fund raising, not a bad goal to have. So sign up today, mark it on your calendars & let's have a great day! This is a kid friendly event!!!

Her words are powerful to me....

I copied this from But you don't look sick. It's a great site and every day I get a small article. this one hit me hard becuase I touched on this subject in my last post.


The Pain of Disease and the Triumph of Togetherness
* Looking back on 5 years of ButYouDontLookSick.com

There’s a pain that can be worse than any physical disease.

It’s the loneliness you feel when you see your friends go out and do things without a second thought and how that is an impossible dream for you. How the simple act of attending class or going out to supper becomes a mountain you just cannot scale, because of the varying weights that disease dangles along with it. It is so difficult when you are all alone and those you love are where you want to be and they don’t even understand the magnitude of how much you would love to have that normalcy to be there. I would love to be able to not deal with a single consequence and only reap the rewards of fulfilling that task with them, but I can't always do that.



It’s the pain of being different—and no one understanding the magnitude of that difference and how every aspect of your life is touched with the tentacles of your ailment. You can’t make a simple yes/no decision on the spot because you have to think about its impact on your body and your future and how that impacts those you love. Nothing is easy and everything becomes important.

It’s having to think through the response to the question, “How are you?” Who knew that was such a deep question, but to those of us with chronic illness, we all know the struggle involved to give a truthful, but upbeat answer. You crave for others to understand that you love and appreciate your life, but that does not make a single breath of it easy or mean that you’re “doing fine.”

It’s the guilt that can accompany it all. Am I holding my family back? Am I putting too much work on my husband? Will my children understand how much I love them even when I cannot run or jump, or even just walk with them? Can my parents truly know how grateful I am for their protective care during the years before, during, and post-diagnosis, each day waking up trying to learn to be the best person I could be with this illness (and not always succeeding)? Can my siblings forgive the extra allowances I was given in retrospect? Can I forgive myself for not being able to do it all?

Like many of you, I’ve lived a life like this. I’m 28 years old and have been chronically ill for two thirds of those years now. So it’s not like we don’t have coping mechanisms that help tackle these pains. I have a faith that has been blessed by the inward turmoil that goes along with the pain (physical and emotional) and I have an appreciation for the important things that come with being able to live the simple life. Yes, being able to, not being stuck with it. But that doesn’t mean that there aren’t those moments. Those moments that you just would like someone to understand.

And here enters “ButYouDon’tLookSick.com.” I’m an innately shy person. Having lived a life of near hermit-dom for many years along the way, I suppose a lot of introspective tendencies have come my way. But when I read the Spoon Theory, like you readers, I was touched in a way that you other spoonies can relate. Someone out there gets it. In fact, not only one person, there’s a community who does. And perhaps I’m more of a lurker than a talker, but even I can appreciate the blessing of seeing (through articles, discussion boards, etc) that we are not alone. And for those of us who need to feel some compassion and understanding every once in awhile to get us through those rough moments, I want to say thank you for this site and the community that cares, that has evolved within its walls. Together we can make it through each day, and make it better than we could have alone.

Written by Carrie Beth Burns © 2008 butyoudontlooksick.com

Mid July update

So much has gone only, physically, but especially emotionally. Let me explain.

Last week was our annual family camping trip. I have had a TON of anxiety regarding this trip because my medication is on a specific schedule and the mornings are already so bad, I was nervous about not being able to walk to the bathroom on my own. At home I have furniture in the right place for me to hold myself up to the bathroom. Mornings are so bad, so you can see where my reservations come in (not to mention late nights and a lot of physical work).

This year we opted to meal share with another family, and only God knew how much that would relieve from me and especially from David when it came to meals & such- don’t get me wrong we did help out but I was incredibly blessed that my friend had an RV so cooking and clean up was MUCH easier.

I kept pretty good track of my medication schedule, the mornings were BRUTAL and I know that two days I had maxed out on my pain medication and desperately needed more. On Wednesday a group of friends decided to do the ropes course, something I have ALWAYS wanted to do. Something I knew in my heart would tax my body so badly that I would pay for it…. I just didn’t realize how much. So in the heat of the day (Note: heat & my lupus are a terrible combination, so I already felt like crap), I put on the gear and I was the second to the last person to scale the 25 foot tree. I was incredibly proud that I made it that far but I was not meant to make it much further. There were some hiccups in the tree that gave us a 30 minute pause and then I moved across the wire, and again another 15-20 minute pause. By the time I climbed around to the other side my body said no more, and since I couldn’t make it back, my legs were jello and my mind was woozy they propelled me out of the tree and called 911. (for more exciting photos and stories stay tuned to my family site.)

So I paid BIG time for that one, I played softball that evening and came back to camp with a migraine. Again, no more pain pills for me so I climbed into bed and slept as best as I could.

The next morning was rough, David helped me walk ½ way to the bathroom, but I got to embraced and didn’t want others to see him needing to help me and I got the strength to go the rest of the way but I collapsed once I got inside. I don’t know why I am so scared to have others see how bad off I really am, maybe because I fear they won’t acknowledge it, or they won’t care.

So the rest of the week was restful and full of bruises and knowing when to ask for help. David is the most AMAZING husband. I just needed to give him a look or whisper in his ear and he was right there discreetly helping me do whatever I needed.

Right now the hardest thing is realizing that those that I thought were dear friends aren’t. Over the last few months I have seen one of two things, first, friends who I thought were true and there for me disappear, and friends who I had never really been close to show that they are true caring friends.

But at family camp a comment was made to me by someone who I thought was a dear friend; it’s possible I am reading into the comment, but it was so hurtful (and no I probably won’t address the situation because I don’t feel like I need to justify my disease). So here is the situation in a nut shell.

I fight HARD to not let my lupus or fibro show, I fight HARD not to let it bring me down. I plan and I plan and sometimes those plans change because my heart desires me to accomplish a task that I probably shouldn’t push myself to do- that’s the dare devil in me .
So when comments are made that it is unfair that I planned rest time or whatever so I can plan to do more than I should hurts and it hurts a lot. I wish for one day I didn’t feel like crap all the time. I wish for once I could go camping with my family and not stress about the fact that I am going to flare big time the next week. I wish people would just understand that when I have to plan rest time and then I change it because something else of greater desire come up that I can do that, I am willing to suffer the consequences.

Don’t send me to bed early because I want to enjoy others company instead of resting- I know In the back of my mind what I will pay for and I don’t need others pushing me away- that is of course unless I am being obnoxious- than go ahead (LOL).
I am so blessed to have those around me that understand. David was wonderful and the Russell’s offered me a warm place to sleep almost every night- I just didn’t want to leave my family alone in the cold and then get caught snoring to loudly .


So today is Friday and my flare is getting progressively worse as the week goes on. I have a feeling this will be an extremely relaxing weekend, I need it. I need to get through this flare as soon as I can.

I'm a slacker....

I have purposely been putting off blogging here for so long. I guess it’s time for an update. May was a chaotic month. With my Uncle’s sickness and then with his funeral it was an emotionally straining month, especially since April seemed to have some backlash of its own on the friend side.

The past 6 months or so have been really hard for me. I have been struggling so much physically that I have wanted to crawl into a hole & just be left alone. I have strayed from some close friends since I don’t feel they really understand, which is my own stupidity for not sharing with them.

After all that stress, travel and just the overall schedule change on my body they last two months have been full of exhaustion and pain. Earlier this month (June) my doctor took me off the metho since it wasn’t effecting me. I am now on a new stronger drug. At first I was VERY excited, it instantly began to work. I went two weeks overcoming so many obstacles. I started to feel great! And then I go a cold. I had no idea how a simple cold would affect me. The first morning I woke up and decided to spend the day sleeping instead of work in hopes of fighting it off quickly. But by mid afternoon my ears hurt so bad I could hardly move, so I went to the doctor. I got an antibiotic and was sent off in hopes of it working.

Now this is another lesson learned: At the walk in clinic they didn’t know what my new medication was or what it did and frankly neither did I, nor did I care cause it was working. Luckily for me I am an apt at my rhuemy’s the next morning and learned that I needed to stop taking it or I would remain sick and the antibiotic would do nothing for me. So 10 days without the meds that wear working. Lucky for me it sped right by and now I am back on them. It is so great to feel so good. I still have small set backs and I am continually learning how not to push myself (even though I knowingly push myself too far).

I am still SO INCREDIBLY blessed by a husband who understands. One who loves me and cares. He is so great. He knows that when I get home from work, laying down for a good 10 minutes means the world to me and sometimes laying down for longer than that is what I need. He is also more protective of me, which is nice. I am only playing on one softball team this year…. Even though I am hopeful to be needed on the coed team as a fill in one night.

It is great to start feeling well. The true test of these meds will be this weekend. I get so sick when the temp heats up, so with any luck it won’t affect me nearly as bad!
Cross your fingers!!

Thursday

Thursday’s are a HARD day for me. I think I have said it before, but for some reason today is especially bad. I feel like I need toothpicks to hold my eyes open. I know I do it to myself, but it is so worth it. The activities I get to be a part of on Wednesday’s are the most enjoyable thing in the world! I hope to never have to give it up. I just wish there was a way to get rid of the exhaustion side effect.

With all that being said I can’t help be still be elated over so many things that are going on in my life. God is so good! It is an interesting mix of emotions when you body feels as if it’s going to fall over and your mind is wanting to run wild with joy. I want to shout from the roof top how great our God is, how much He shows me His love and how grateful I am for the many, many blessings I have encountered the last couple of weeks.

In saying all that, I am reminded of something I was struggling with last night in my quiet time before AWANA. What do I pray for? Do I pray healing? Do I pray for strength? Do I pray to learn? Do I pray to be an example to other Lupies? Do I pray to be able to handle the many medications I am on? I guess I should be praying for all of that, but for some reason praying for healing seems so wrong, so that is why I thought of this problem. Not because I don’t want to be healed, because I can’t imagine what one day would feel like just being normal. I just know in my heart that God has something to show me through all of this…. He is an amazing God and I know I can only get through this because His strength is holding me through. So I sign off on my dreaded Thursday, enjoying the blue sky peaking through dark gray clouds (literally and figuratively speaking) and enjoy the warm sun on my face for just a moment.

I am thankful for all of you and the blessing He has shown me through you.
Happy Thursday!

Lessoned learned

I had an energy drink this morning...
I went to the doctor...
she gave me a pill for energy...
I took the pill for energy...

Lesson learned.... pills for energy & energy drinks don't mix. I am shaking and ready to BOUNCE off the walls... I guess I will have a good afternoon.

Is there such thing as too much?

Do you ever feel like you are taking too many pills?
I went to my rheumy today, I am really feeling like crap. I have been dealing with this flare up for a month & I have a feeling it is going to get worse before it gets better. David says I am on too much meds. But honestly when I’m not flaring I doing great. I just can’t kick this flare. I didn’t get to see my normal doc, so once again I had to fight steroids. I refuse to do them, they are so hard on me and they don’t work!!!!! So she gave me more meds. I got my “happy” pill back (provigil), I LOVE this stuff. The only down side is when I forget to take it I hit a large brick wall and feel worse than I ever thought I could. But for now I am going to enjoy it!! I look forward to this afternoon when I am in the midst of it’s effects. I also got something for my pain in hopes of killing off the chest pain so I can breathe. If these two pills work I will be SOOOOOOOOOO elated!!! . So Saturday-Thursday I take 8 pills and on Friday’s I take 14! Holy moly!!! So next time you are at the pharmacy you can think of me.
Enjoy your day! I know I will .

Oh a funny “mommy moment”
I call my prescriptions, “drugs”… I have a 6 year old who just learned that “drugs” were a bad thing and you should say “No”. Good for him!!! But the look on his face when I mentioned I needed to take my “drugs” was priceless. We had to have a talk about how it’s ok to take drugs your doctor gives you. So I have to learn NOT to refer to my meds as “Drugs”. Doh! Things you don’t even think about until your little one points it out. I can just see him in school or Sunday school now… “My mommy takes LOTS of drugs every day before she goes to work & before bedtime”. Oh boy!

Another Monday

well it was a ROUGH weekend!!!! I think the medication for my fibro has started to wear out it's welcome. The last three mornings I have woken up so stiff that tears burn my eyes. I am still having serious issues breathing. My regular doc is out this week, so I am going to see someone else there. I am really reluctant to go because last time she said my breathing issue was a primary care thing. But when I went to the ER he said it was a lupus/fibro thing. I am just feeling defeated today because I don't think I will get answers. My mind also feels like mush. I can't remember names or what I am doing. It seems worse. It is so frustrating.
I guess it's time to think positively- if I can remember why I'm trying to think positively. I will update you on what the doc says tomorrow!

Hanging in there

I have been hanging in there the last couple of weeks. I am still having trouble breathing, but it seems useless to go back to the doctor to have them tell me it's lupus or fibro. That gets old, the "Sorry, I can't help you, just let it pass". That's the reason I quit treatment a few years ago. David seems to think it's my medication, but the medication is helping in so many other areas.

Wow

A couple of months ago a friend sent me a news article on engery saving lights & Lupus. Apparently these new energy saving lights can cause lupus flares. I was skeptic at first, because how can a light affect my lupus flares. So I thought it couldn’t hurt to change the light bulb in my night stand maybe it will help me feel better- that and I was/desperate. The change was immediate, but I could tell that my evenings were getting better.

I then overheard our facilities director say that the lights in our office were the same energy saving lights. So I asked to have the lights above my head removed- plus I like working in the dark. I didn’t really think twice about the light issue until this morning.

Last week I was moved to a different area temporarily while they worked on my desk. I was shocked at how sick I was. Work tired me out and just walking took all my energy. Again, I didn’t even think to make the connection until today. I moved back into my cube yesterday and I have noticed that I am starting to improve. I am not as shaky as I was and my body is slowly building strength and energy. So I am no longer skeptic about the lights. Sure, it could be just coincidence but I don’t think so.

Today was an interesting day- and it’s only 10:00 AM!!!!!!!

Let me start by telling you of last night. When we got home from work I had to go to the store for my medications & David had to take Josiah to t-ball practice. So off we went. When I got home I popped dinner in the oven and sat down at my quilting project, I slowly worked on it so I could be up when Josiah & David did and see them for a few minutes. After an hour & dinner I climbed into bed at 6:30- barely able to hold my body up much longer.

So this morning getting up took all my strength. The worst part is I slept so well (thanks again to a heated mattress pad!!). All the way to work I felt my body want to give in. I couldn’t hold my eyes open so once again I slept while David drove.

As I walked to my desk I felt that it took all my energy from collapsing. It is the weirdest feeling in the world. I feel that if I just relax my legs will become jello and I will fall over and sleep. So I got out a Rock Star- my new addiction (energy drinks). They normally work really well, but today they have made me extremely shaky. My body has gone on strike once again.
So I came here, to vent once again and I felt SOOOO incredibly blessed by the two comments on my last post. I don’t know how you guys found me but thank you sooooooooo much!!!!

Exhaustion

Boy oh boy. Life just seems to be flying by and I feel like I am either in the throws of it running to keep up or crawling into bed to recover from keeping up. The exhaustion I have been feeling lately is AMAZING. How do people survive? I feel like a walking zombie all the time. Monday’s suck because I have spent the weekend napping off and on, so Monday comes and there is no time for a nap. So I try sugar and caffeine to keep myself alive but by 4:30 I am dead to the world. I know that only makes the evening worse, but I can’t keep awake throughout the day. The main frustration is that I have things I want to do, things around my house, cleaning, quilting, cooking, grocery shopping. I just wish there was a way to complete all these things. Saturday morning I did the dishes and I had to lay down- what is that about?
So if anyone has ideas on how to live a “normal” life and deal with all this excessive crap I would LOVE to hear them. I hate laying down to this disease, I refuse to let it get the best of my, but I am starting to get overwhelmed.

What word describes you?

Two people used a word on me this morning and it made me laugh, not because it was a funny word, but because it is a really good word to describe me.

Irrational (Adjective) ir-ra-tion-al: Lacking in reason or logic, unable to think logically, lacking the normal ability to think clearly

It was funny because it was used in two different ways, about two different topics, both of which I am insanely passionate about (Sometimes too passionate). And a lot of the times I get irrational and act without thinking. Huh, I think I should learn to control that, will that ever happen?

So what makes you irrational?

Life is too much fun!!

After writing the last post I got a call from my doctor’s office. She told me I needed to take a couple of days off and just rest. The steroid treatment wasn’t working and I was starting to get worse. So I went home at 12:00 and slept all afternoon, then Tuesday came around and I had to take Alex to the walk in clinic to have his ankle looked at (No worries, just sprained). After I took him to school I ran to the store to get some laundry soap. By the time I got home I was so exhausted I crashed until 2:30. I can’t remember being so tired.
Wednesday came a little too fast. David told me to go get my nails done and hopefully relax. I could hardly keep my eyes open the entire time. It was bad. As I was leaving my mom called me, upset, and asked me to come to the vet’s office. So off I went. Apparently her 14 year old cat broke 4 of the bones in her paw. So 2 hours later I was heading home. Another night were I CRASHED and hard.

I spent most of the night trying to breathe, a new symptom to me. I called the doctor’s office first thing in the morning and was squeezed in. Because I was so light headed and my eyes were still “shaky” I decided to have my parents take me.

After I met with the doctor she said I should go to the ER since they didn’t have the machines that were needed to test for a bunch of different things- including a blood clot in my lung.

After 4 hours the doctor told me it was pluresy and it was pass. I was a little disappointed, especially since he didn’t even touch me until after he diagnosis me- then he listened to my lungs. It is SOOOOOO frustrating!! They see “lupus” or “Fibro” and they instantly dismiss everything to it. I trust his diagnosis only because my lunch x-ray & blood test turned out ok, so what else could it be.
Still it is SOOOOO frustrating.

So blessed

I feel so blessed. When I was diagnosed with fibromyalgia I was scared, I didn’t want another “label” to slow me down. So I started reading up on it and the more I read the more I was baffled as to why it took so long for someone to tell me I had it. So today I have been focused on how blessed I am to have this “label”.

There are things I have learned that I would like to share. First off, I wasn’t diagnosed because I would complain about some symptoms to my PCP thinking it wasn’t lupus related and when he told me it was I didn’t bother running to my other doctor because I refused the steroid treatment and I didn’t want to be told that this was the only way.

What are some of these symptoms? Well let me share them with you, because I am STILL baffled that these symptoms are all related to fibro. First, the ringing in my ears. Second, the sensory overload- this is a huge one for me. I freak out when I have been in a large crowd for a while our even a small group. I just need to get away- hide in the bathroom for just a couple of minutes, breathe relax. Noise bugs me a lot, my mind can’t focus on things especially when there is a lot of background noise. I used to think I had bad hearing, but no, it’s a sensory overload. And when I don’t have the break I really do a downward spiral and I can’t control myself. The other symptoms were a little different. I have been complaining a LOT about my hips, but all the tests, xrays & MRI’s didn’t show any sign of arthritis or anything else. Well come to find out that lower part of my pack is a pressure point. It is amazing all the pressure points I have been having issues with but complaining that it is something else. And then there is the sleep issue. I don’t sleep well at ALL, which lowers my pain tolerance & increases my exhaustion. So when I Started taking Lyrica I was blessed more than anything by the sleep!!! Yahoo!!!

So today I feel INCREDIBLY blessed today, if my body could handle it I would jump up in down. Even though I am in a flair I am SOOOOOO blessed. God is so GOOD!!!!

Fibromyalgia

Not a word I was ready to hear. Fibromyalgia is a word that had crossed my mind a few months ago, but I decided not to ask my doctor about it for fear of it becoming a familiar word. Fibromyalgia is a word that is now a part of me.

When I first heard this word last Friday my mind went nuts. I don’t get it, how, why? What’s going on? After learning more and finding out that there is a drug that can help me with it I felt better.

I started to read the materials my doc gave me and learned a lot more and learned that I definitely had this illness, no doubt. So now I work with a new name, new drugs and a new challenge. How to overcome Lupus & Fibromyalgia. I know I can do this with God’s help.

Click here for more information

Another week

Well another week has gone by and this one was a whopper. I spent most of Monday night & early Tuesday morning tossing and turning. I was sick to my stomach and feverish. I spent Tuesday at home, just laying on the couch.

I have been dealing with severe pain in my chest. It’s not the normal pleurisy (inflammation of the lining of the lungs). I just hurt. It seemed to focus under my arms. On Wednesday, the pain seemed to be shooting into my neck so I broke down and called the nurse. I didn’t get a run call from her but from the receptionist insisting that I come in right away. Oh boy, this wasn’t good. I made the appointment for first thing Thursday morning.

When the nurse touch my chest I thought I was going to smack her. The pain that shot through me was so intense. I had never had anyone push on my sternum like that so it took me by complete surprise. She did it again and she was also shocked. She named my problem with some long Latin name and said “Do you know what that is?” I gave her a dumbfounded look and responded “No, just don’t touch me again”. Apparently, the cartilage in my chest is inflamed. She put me on a prescription strength dose of anti-inflammatory, so now we just wait. And wait. And wait.

I spent early this morning laying in bed trying to breathe without moving my chest. Haha- I don’t think it’s possible. I’m not suppose to lift anything for a week, we will see how that works.

Strike

The easiest way for me to describe my lupus is by saying my body is on "strike". I try and negotiate the terms of the contract with prayer, drugs, rest and chocolate. But nothing has convinced it to sign the contract.

I heard a sermon today that said if you have a hard time dealing with others you can just walk away, but when it’s yourself you have issues with your stuck for life. So here I am stuck in a body that refuses to negotiate any more. I haven’t given up, I will keep on, but sometimes it is so overwhelming.

This week has been another battle of strength. Who will win, my mind or my body. I am learning to make more sacrifice’s, that I need to pick a few things to do and love and let the rest go. I can’t be in the middle of every social and if I want to continue with the ministries I love I will have to let other things go. Such a hard realization. There is also a fine line.

Today I woke up to a beautiful white blanket of snow. I love the snow. It wasn’t long before I told Josiah to get ready so we could go outside. I bundled up and headed out with him. After a few snowballs my hands started to burn in pain, the cold was just too much. My other joints started to join in. It was so hard to tell Josiah that time was up, after just a few short minutes. Luckily I have a understanding son who didn’t complain and was telling me that he had fun.

Update

I have spent the last 8 years telling myself that I wasn't going to let it get to me. That I was going to fight it and I would never give in to Lupus. But in doing that I realized I have over committed myself and therefore realized that it has gotten worse than it probably would have been. I'm not yet willing to give some things up and others I hope to never have to give up.

The new medication is still taking it's toll, every week. I am getting a terrible rash all over my upper body. The meds seem to be taking care of some of my symptoms, but other seem to be getting worse. My joint pain is so intense, partly because it is so cold and moist outside. I am having days were typing is even difficult. I have never had that issue, but I hope it doesn't last long. Since typing in my job is a must I can't loose that.

My muscles are still suffering especially in my chest. Honestly, I don't know how I would get through this with out the strength God gives me. I have been working so hard on learning to rely on Him more and more. His strength gets me out of bed, I honestly know that without that strength I could not do what I do.

Fast Forward

So fast forward to recently. In September my pain began to get worse. I had been ignoring it for so long. Mainly because I was so tired of being told that every aliment I suffered was Lupus related and the only thing I could do was prednisone (Steroids). I refused. I would rather suffer than go back on them, so I did. By mid November the pain was no longer tolerable and I made an appointment to go back to my doctor and start treatment back up, and if it meant more steroids I would consider it- anything to be better. My doctor spent a lot of time with me discussing everything and why I had quit and why I had come back. I felt so good when I left. We decided to put me on Methotrexate, a drug I had been on once before.

The first week I felt like a train wreck on that medication. Each week it gets better with the side effects. Unfortunately the pain is not getting better. Most of last week I have hardly been able to type or walk up a simple flight of stairs. Even today my body is still on strike, but I guess I am learning to cope with the intensity a little better. Breathing is still very difficult and but I am hopeful that the metho will kick in sooner rather than later. It’s been 4 weeks, which is when I was told to start seeing improvements. A huge praise is my exhaustion level has decreased incredibly!! A month ago my days went like this: Up at 6:30 am, out the door by 7:00, sleep all the way to work. After work I would sleep all the way home, wake up long enough to climb into bed and sleep til 6:30. I am so happy to say that I can go home and spend some time with my boys. I will deal with all the side effects needed if it means I can spend time with them.

My Lupus in a nutshell

It first started almost 8 years ago. A couple of weeks after David & I got married I was in and out of the doctor’s & ER with chest pain. I had several tests done, my heart & lungs were normal, so there was no explanation for what was going on.

One month after it all started, I was talking with my mom & she asked if they had tested me for Lupus. At that time Lupus was a disease my mom had, that is all I knew. So I went online and did some of my own research. I learned that I had 7 of the 11 symptoms, the only thing missing was a blood test to confirm the diagnosis. I headed to my doctor’s armed with new information and the request for a blood test. I was surprised to find that it took her some serious convincing to get her to order the test. She told me I was too young and that even if the test was positive it was highly unlikely that I have this disease (I was 22 at the time).

The ANA test takes a week to come back and I anxiously awaited. When I got the call that it was positive I immediately made an appointment with my mom’s rheumatologist, the best in the state . We discussed my symptoms and took more blood and moved on with the treatment.

During the first 3 years I took drug after drug, none worked. At one point I was on such heavy doses of steroids that my liver started to have issues- not to mention the weight I had gained. So I finally stood up and said enough. The put me on oral metho and the side effects were so bad, but at that time I lost my medical insurance, so I was on my own.

Over the last few years I have done no treatments for my lupus, I have been in severe denial. Someday I may regret that denial, but for now I am learning to live on medication. Learning that pain is a constant and to stop blaming my pain & to stop making excuses for every little pain, or side effect to the disease I face. I know I can survive this, and I know I will survive this but it is only with God’s strength & love that I can get out of bed each day…