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That’s what I did.

I hit a wall.  This is an official quote from my legal testimony at the Hearing to Appeal the Social Security Decision (they denied me at first but I’ve been approved since thank goodness).  The judge asked me what happened…why I stopped working.  I told her, “I hit a wall.”  Apparently that was clear enough for all to accept because my attorneys highly encouraged me to say that and the judge seemed satisfied with that response and moved on to the next question.  In fact, she didn’t have much more to ask me after that.

To me hitting a wall means I was all done.  I had no more to give.  I was in critical need of refueling my spirit physically and mentally and I had no energy left.  I’m not even sure where I had these stores of energy to begin with.  My work situation was toxic for me.  Whether I was reacting in a toxic manner, the workplace itself was toxic, or whatever… I had to get out of there.  I had no idea how to do that so my body decided for me.  In fact, it was screaming desperately for help.

I’ve heard talk over the years of trying to force a square into a circle and how that really doesn’t work.  Well, that’s what I was doing.  I was pushing pushing pushing through my days.  I only had knowledge of my body dealing with multiple sclerosis (had no idea I had lupus yet) and that wasn’t enough apparently I guess.  It might be for some people but hey, I could get up every day right?  Well, then I gotta MAKE IT WORK.  Sure I was taking care of myself, but like a machine.  I had a routine down.  I knew what I had to do to make it happen.  Sure I had mechanical self care down but where were my feelings in this?  I “had to” “had to”” had to” right?

Wrong.  2010 was a hard year for me with my health.  In the beginning of the year my thyroid started acting up.  Then in May my eyes started throwing up warning flags that I had surpassed the idea of being overwhelmed.  I was drowning.  May is a heavy stress time for people in my profession.  I was using everything I could just to work.  But what about the rest of my body? …I kept going.  When I look back I don’t know how.  A lot of that time is a blur.  And then in June I started having digestion problems that were keeping me up at night the pain was so severe but I kept pushing.  I was crawling inside and struggling so hard but even my denial was so bad I ignored it.  It will pass.  Really.  Right?

Nope.  A week after my stomach pains I was vomiting severely.  I’m not someone who vomits so I had no idea that the manor in which it was happening was out of control.  To me it felt like there was a monster inside trying to dig out my insides but I thought that’s how it worked.  I couldn’t do anything.  My body was ALL DONE.  I was somehow making it.  It must’ve been automatic.  I did everything I could to work and then at home I couldn’t do anything.  I had a “body migraine”.  ANYTHING and I mean ANYTHING would make me vomit: sound, talking, lights, reading, moving you name it.  By Friday I was vomiting and could keep NOTHING down.  By that Saturday night I was FINALLY in the ER.  Why did I wait that long to get help?  Because I really thought it was a stomach bug and it was going to pass.

I HIT A WALL…

You know, when there’s a wall that’s too thick, too tall, too low, too wide, too dark, and impenetrable you can’t get through it, around it, over it, under it, or anything.  My Body told my mind to Step Down and I had no choice.  I had nothing left.  I was beyond dehydrated and put on a VERY strict diet of chicken broth for over a week.  That was it.  That was all my body could take.  I had to rebuild my diet and ability to eat again.  Turns out my liver was toxic.  There’s that word again.  TOXIC.  Scary word huh?  Scared me enough.

FINALLY.

It wasn’t until two months later that I learned I had lupus along with multiple sclerosis.  Turns out my thyroid and eyes were acting up in the beginning of the year due to lupus.  I was probably having both an MS exacerbation and a lupus flare so that’s why I had no energy, severe fatigue, could handle nothing, and my digestive system was purging itself.  MY BODY WAS DONE WITH ME.  My running the show didn’t work anymore.  It was taking over and to me I had no choice.  I didn’t want to hit another wall.  I smashed so hard into the wall that I don’t know how there was any of me left.

I am still recovering and rebuilding from that physical and mental turning point in my life.  Because I’m still here and alive and kicking I try really hard not to find myself at a wall again.  It’s a struggle because the old programming says to go go go but I don’t want to feel that horrible and desperate ever again if I can help it.

MY BODY IS WORTH IT.  I DESERVE TO FEEL BETTER.

And I am slowly getting there one step at a time…

Well, it has been quite a week! Let’s see if I can break it down!

*Monday:
I had a late morning appointment with my Ophthalmologist to do a vision exam to see if I need new glasses or not. It turns out that my eyesight has changed just a wee bit and although I’m still seeing 20/20 with my glasses (a miracle also since my eyesight is really bad. I am crazy nearsighted in my left eye which means I can’t see far away and I a have crazy astigmatism in my right eye.) but apparently I can see just a bit better and everything should look really sparkly once I get my new lenses. At the end of the appointment I asked my doctor when he thought I might just be able to wear contact lenses again (I haven’t been able to because my eyes have been so dry. He told me about a year and a half ago that I wouldn’t be able to wear contacts anytime soon because my eyes needed to be less dry and they needed to have some time to repair themselves.) and he considered it for a moment and then took a look at the current dryness of my eyes. Guess what? He said my eyes looked really good and so much less dry than they were and that I could wear contacts again!!!!!!! Woo hoo! Yay! I’m so excited! I haven’t been able to wear contacts for years. I’ll be able to see in 3D again. Sooooo, the contact lenses are being ordered as I write this! I was given a warning by my doctor to be careful about wearing them too much especially at first because it’s important not to make my eyes worse just because I’m wearing contacts again. He told me we’d both worked really hard to get my eyes in shape and he’d hate to see more problems so I needed to take it really slow and ease my eyes into wearing them again. Yes sir! Sure. Whatever. Just let me wear them!

I also had an appointment in the afternoon with my Dermatologist. I don’t like making two appointments in one day but they are in the same building which is really nice so sometimes I make exceptions. Turns out my Dermatologist thinks that considering what I’m up against with lupus (can get skin rashes, acne, hair follicle issues, eczema, etc.) I’m doing extremely well and we’ve now moved from a flare-up treating regimen to a maintenance treating regimen. Of course everything’s new and changed but it’s for different reasons. She thinks my skin looks really good and she said it’s because of all the work I’ve been doing to get there. I don’t have to see her for six months unless something comes up. She told me she’d see me sooner if anything flared up or to call her if I had any questions.

Wow! Now that was a great start to my week! Two positive appointments in one day! Awesome!

*Tuesday:
I had a follow-up appointment with my Rheumatologist regarding my lupus and she felt very good about where I was. Sure I had a long way to go and she completely supports my disability but there is improvement. She pointed out that I had made a lot of progress since I first started seeing her almost two years ago in August of 2010. We had a great discussion about my options and some details that had come up and she spent some real time answering my questions. I did more blood work as I usually do when I’m there now to make sure my organs are functioning correctly and then she told me she didn’t have to see me for three months! That is so cool! I graduated from seeing her every two months to seeing her every three months now! Amazing! That is real progress. I was seeing her weekly for quite awhile. It’s taken a lot of work to get there and what’s also awesome about it is that the work has actually paid off. I’m getting somewhere. She told me she’d see me sooner if need be and to just call her.

It was also my 1 Year Off of Prednisone Anniversary too! That’s huge!!!!!!!!

*Wednesday:
Phew. A day to breathe. I’m so relieved. What a positive yet really busy and draining first half of the week that was. I was able to have some down time which I try really hard to do on Wednesdays if possible so that I can refuel for the next half of the week. It usually helps a lot.

*Thursday:
That’s today! I’m getting ready to go to my second to last Physical Therapy appointment in a few minutes. I only have two left because my Physical Therapist feels that she’s done all she can with me and that it’s time to pass on all of the At-Home exercises to me and that it’s up to me to commit to doing them every day and to walking every day if at all possible. She says the idea is to help me get as strong and mobile as possible so that if/when exacerbations/flare ups happen my body is hopefully better equipped to deal with what comes my way. I have heard this so many times over the years but I’m really hopeful this time about it because the exercises she’s been giving me have already helped immensely. These last two appointments are just to finish up and to see what other exercises to give me to do at home and to give me a plan and baseline to work with. I am sad to not be able to see this woman anymore because she has been really great and very funny to deal with but I’ll admit I’m relieved because it was overwhelming to commit to seeing her at least twice a week on top of all of my other doctor appointments and other obligations such as resting and recovery too. Oh and having a life helps too if possible.

So this has been a week to focus on progress and positivity and it’s really helped my mental well being to hear that things are improving because for so long it didn’t feel that way and I have been feeling very burned out from all of it these days.

Here’s to more good days!!!

Woo hoo! I can’t believe it! Today marks 1 WHOLE YEAR without Prednisone (steroids)! I’m so excited! This is a really really big deal for me.

My whole life changed the day I was diagnosed with lupus (had already been diagnosed with multiple sclerosis in December 2002) in August 2010. I IMMEDIATELY started feeling better when I was put on a regimen of 20mg of Prednisone that would be gradually tapered off over time. I scoffed at my Rheumatologist when she mentioned that she wanted to put me on Prednisone and was I okay with that because “it’s kind of a high dose at 20mg”. I mean, I figured that was not high. Come on now. Try taking mega doses of IV steroids (Solumedrol) up to 1000mg (a day!) during an MS exacerbation that requires a three day hospital stay to make sure my body doesn’t go into shock due to the crazy amounts of steroids pumping through my system. That’s a high dose right? 20mg sounded like nothing.

Ha! The joke was on me. It wasn’t like she just put me on 20mg of Prednisone and then took me off of it when the time seemed right. I had also taken up to 60mg Prednisone during a few different upper respiratory infections during my life and the doctors would taper me off to 40mg and then 20mg and I think that was it. After that I just had to deal. No matter that I might crash. No, what my Rheumatologist had me do was take 20mg for a week to see how I felt on it and then come back for a follow up to see her and tell her how I was. She didn’t want to tell me anything else except that MAYBE I had lupus but she didn’t want me to think about that just yet. Her goal was to help me feel better. If I did feel better and finally felt some relief then she’d go forward and give me a lupus and/or mixed connective tissue diagnosis (takes awhile to figure out if the body actually has the MCTD) and we’d go from there.

Oh my goodness! That first pill and first dosage changed the game completely!!! My relief was unbelievable! I expected to be feeling better to an extent since it is an anti-inflammatory medication but I felt loads better. I can’t describe it. I actually felt like perhaps I could live my life. And that was just one day. And after a week of that kind of relief and very slow but improved release of inflammation, I started to get ready to have lupus and I was really thinking this could help.

At that next appointment my Rheumatologist listened to my description of symptoms and how I felt first and then confirmed that I either had lupus or MCTD (which was a blow to me mentally but that is all for another Blog. Trying to stay on topic.) and that she not only wanted to start me on a specific lupus medication called, Plaquenil (that one wouldn’t really start working until about three months later), but that she wanted to start me on a regimen of a taper down schedule to start/continue at 20mg Prednisone for at least two weeks and depending on how I was feeling I’d taper down to 17.5 mg, then to 15 mg, then to 12.5mg, then to 10mg and once I got to 10mg she told me that I’d have a harder time getting my body to let it go so we’d go down 1 mg at a time very slowly. Ideally each taper down level would take two weeks for me to adjust and then I’d change everything all over again and go down to another level and take two more weeks and so on. So what she really meant by high dosage was that it was a high dosage for a longer amount of time than just three days basically. Alrighty then. That makes more sense now that I’ve gone through it. And wow, that was a lot to keep track of with the schedule and I just about needed to hire a manager to handle the schedule for me.

That didn’t happen with me. It took me longer sometimes to adjust. It really depended on what was going on with me (I had numerous other doctors at this point trying new regimens and medications and my body was constantly trying not to be in an uproar about all the changes and needed some extra patience and love). One of the hardest to adjust to I believe was going from 15mg to 12.5mg, 8mg to 7mg and then the change from 2mg to 1mg. My body and mind had a REALLY hard time letting go at the end. It was scary. This was my safety net when things were hardest. I knew I could get at least some relief. What about when it was gone? My body wouldn’t be able to depend on it and I’d need to find new ways to heal. It gave me so much immense relief in the beginning because my inflammation was so bad. I really did have so many moments of, “Oh! That’s what life is like when I have just that much more energy! OH! You mean I don’t have to feel like this (crappy) all the time? I can feel better?”.

My doctor had the timeline down for how this should work. She said generally her patients take about nine months to a year to wean themselves off of Prednisone. It is very easy to be dependent on the drug so the idea is to get off of it as soon as its physical benefits have kicked in so that you don’t get too used to it but also because its side effects aren’t too fun. (My side effects included stomach problems, mood changes, hormonal issues and it can also cause bone loss and who wants that?).

She told me once I was at six months on the taper down regimen, I’d start to feel like just maybe I could “do this”. That I’d really feel like I might have an understanding of what a good “baseline” is for my health and I might get some clarity. It was right around six to seven months when that happened for me. Then she said that at nine months I’d start to be able to feel like I could live without it and there might just be a “normal” somewhere. She was right on it. That is almost exactly what happened. She coached me through the entire way and didn’t drop me once. She had said straight out in the beginning that I had no choice but to work my way off of it once it had helped me “feel better” when I first started it. I really think a lot of her for all of the attention she has given me. She is the reason I finally found some answers after desperately searching for what the heck was also wrong with me in the summer of 2010 besides just MS.

And then once I was off Prednisone I was okay. I made it. Well apparently I did because here I am a year later and I’m alive and kicking. Well, not kicking as high or as much as I’d like to but I’m getting there. Some days are harder than others. Interestingly enough, after about six months off of it a lot of other more minor health issues started showing back up again because they weren’t being masked by the Prednisone anymore. That’s definitely been frustrating but each of my doctors assures me that this is all a positive thing because it means the more major health issues have calmed down a bit. Yeah well. I guess.

And as for that specific lupus medication, Plaquenil, once it started kicking in after about three months I think that’s when my body started feeling like maybe, just maybe, I might not need the Prednisone anymore. I’m still on the Plaquenil right now and there is no plan for me to stop taking it any time soon. That’s okay with me I suppose since it has helped me so much.

So there it is! 1 WHOLE YEAR OFF PREDNISONE! I took it one day at a time. That’s all I can do anyway. Who knows? I may need to go on the Prednisone in the future but today I don’t have to and my Rheumatologist confirmed it today at a doctor appointment so that’s even better! And in honor of the 1 Year I’m going to write the birthday song but make it appropriate for the celebration:

Happy 1 Year Off Prednisone To Me!
Happy 1 Year Off Prednisone To Me!
Happy 1 Year Off Prednisone Dear Me!
Happy 1 Year Off Prednisone Go Me!!!!!
And many more…..!!!!!

…live in the moment. To be present. To be content with where I am at any given time. I don’t want them (MS and lupus) anymore! I want them to go away! Did I ever want them? No. I want them to leave me alone.

I really felt this last night. It was finally raining here in Los Angeles, CA (after a big weather shift) and it’s a big event because it doesn’t rain that much here. The media is all over it. It’s Storm Watch 2012! And you know what? I love the weather! I am a weather geek! My body, however, DOESN’T LIKE IT ONE BIT. When there’s an actual storm system on the way here I can feel it at least a week before. (I guess I should be grateful that I only feel it a week before now since I’ve been recovering from my last lupus flare in mid-2010. Before then I could feel it two weeks before–I swear it was even before Mother Nature decided rain might just have to come our way.) I don’t know how to explain the sensations. The atmospheric pressure starts changing and I start feeling a pressure sensation along with more pain and a certain type of heavy fatigue. Really, all kinds of crazy symptoms can happen. Usually when I start tingling all over I know it’s a crazy rain storm. The build up of pressure really messes with me.

That’s what was happening last night. I had started feeling like it was going to rain last Saturday. It drizzled a bit on Monday which gave me some relief and then the air pressure was going crazy after that and the past few days have been a bit rough. I could still deal though. Yesterday during the day I was tired but I usually am on Wednesdays. I usually try to take Wednesdays to breathe and refuel from the previous two days. But then something really changed and it got really hot outside compared to what it had been and very still and it felt like we were building up to a midwest/New England-type storm and we were in for it. BUT…IT…SURE…DID…TAKE…ITS…TIME…..

My poor body. The weather bullied and teased it until at least 9pm. I really started feeling very strange: short of breath, very low energy, pain, tingling, weakness, HEAVVVYYYY fatigue–it was crazy. I felt like I was going to burst physically and mentally. I was so overwhelmed. And then once it rained I expected (darn expectations) that I would feel much better and a lot of relief because that is what happens a lot. Sure I feel symptoms but I start being able to breathe again and the feeling of heavy physical pressure starts lightening and the recovery starts BUT not last night.

This is really hard for me to admit, even to myself. It was awful. I felt awful. I knew I needed to stop everything and go to bed and lay there but when I did and I turned out the lights it was so dark and quiet that all I had to distract me was Me. Yeah. Not good. What was going on with me at that point? I was getting waves of tingling all over my body and there was no way I could go to sleep. I was too aware of it.

I try so much now to live in the moment now because that is all I have. If I let my mind go into the future at all FEAR sets in. What’s wrong with me? Is this another attack/flare up/exacerbation? What do I do? How do I fix it? WILL THIS (UNCOMFORTABLE) FEELING EVER STOP?

IT IS SO HARD TO LIVE IN THE MOMENT WHEN I’M FEELING CRAPPY.

Who wants to be where they don’t want to be? It’s uncomfortable there and my mind starts feeling trapped and I go around and around in circles. I HATE IT.

I’ll put it out there.

I HATE MS. I HATE LUPUS.

Why? Because I can’t control them and that make me feel crappy. It is times like last night when I feel like they are controlling me that the anger starts up again. I have to admit these feelings. I’m not always in this place. These diseases have taught me to slow down, to look up, to look around, to breathe, to live a bit more (even though I have other ideas of living too), to love, to reach out more, to learn to be with me, to take care of me, to love me as much as I can, to make healthier choices and the list is endless.

And thinking about it right now, PHEW. I DON’T HATE ME.

I’m the most important in all of this. I am all I have. I think I did in the beginning. I think I hated me for letting any health problem take over. I think I thought I must’ve done something wrong and that I was being punished and that was the overall feeling. I’m not going to lie at this point and say I never have these feelings about me anymore but when they pass through they do go away again and they’re not as intense. It truly comes in waves.

So how do I feel today so far. Well, after getting more sleep and rest this morning I’m feeling like I just might have passed this next wave. It’s usually hard to tell right after because I’m still feeling out my surroundings. The worst of the rain does seem to have passed when I look outside and see some sun and dark clouds sharing the sky. And physically I’m not feeling it as much either. And you know, seeing the sun and clouds share like that reminds me that it really is about sharing my body. I have what I want for my body and my MS and lupus have some other ideas. Apparently we all have to share. (There’s a lot of me right now that is struggling to share and even write this because then maybe I’ll have to actually share but I won’t force me. I can just try). It just gets very very crowded in there with so many things happening all at once.

I am grateful I could write this today and that I could write this at all.

Now…time to breathe.

I have been hemming and hawing all day about what to write. Then I started ranting to Corey about how my boobs were itchy (I know, TMI) and I was so frustrated! Let’s face it, those of us with lupus who have boobs need boob shields!!!

Lupus is very sensitive to the sun. My lupus becomes very noticeable when touched by UV rays. That’s any UV rays. I could be in my apartment with all the blinds closed, wearing sunscreen and sun protective clothing (thank you to the company Sun Precautions) and still feel like the sun is bothering me. Yes. The sun is an entity and it does its best to bother me. That’s what it feels like. It’s all about me. It can drain me of all of my energy, thus making me feel crazy fatigued. It has been known to make me feel nauseous. It causes skin reactions like rashes (any redness I have on my skin is apparently caused from the sun according to my Rheumatologist) and sometimes a burning sensation. I have felt a lot of pain and aching in my joints too. My eyes are very sensitive to the sun and thus have a hard time taking in all the light and feel overwhelmed and overstimulated and then I can feel lightheaded. The sun also has this ridiculous ability to make me very hot! OK. OK. It can make us all feel hot. But I can’t do anything without feeling hot and I have since learned that that is multiple sclerosis heat fatigue and lupus photosensitivity (another word for sun sensitivity) and it’s so annoying! Oh and I almost forgot to mention that fluorescent lights can also affect me and make me start feeling “weird” as I call it–or basically I start feeling really bleh. You know. Bleh. Along with it happening just because, if I am already tired, stressed, or even hungry it can magnify the symptoms even more.

So you’d think I’d be happiest as a bat in a cave right? How about as a Vampire? Om, no. I like the sun. I never was a sunbather and I didn’t spend that much time in the sun but then I like to be outside and take in nature and one of my favorite meditations is looking at the sky and the clouds. Oh and I kept hearing that Vitamin D was so important for my health in general and given my chronic illnesses and that the best source of it was the sun.

Well great. I was truly heartbroken that I couldn’t/shouldn’t be in the sun that much when I found out I had lupus. Yes, wearing sunscreen all over, wearing special sun protective clothing, at least wearing longer sleeves and pants or capri pants (no shorts–hard in the summer sun let me tell you), wearing hats (special sun protective hats are best) and trying to stay out of the sun do help. Thank goodness I have all of these options available. But, let’s face it. I can’t get out of the sun. I live in Los Angeles, CA. I could live somewhere else but I am affected by all of the weather (I feel the rain coming, etc.) and so it wouldn’t matter. Something would still bother me physically. The sun just gets to be my enemy if I let it. And I mentally need to get outside and take walks, get some fresh air, live my life, be in a car, get out every once in awhile. You know. The stuff we humans do. There is just no escaping it. Besides, to make matters even more complicated, my MS loves the sun. So confusing!

One symptom I’ve noticed more of lately from the sun is itching. I can get very itchy especially since the sun is more intense as spring moves into summer. It takes nothing for the sun to affect me now. That being said, I tend to get itches I can’t really scratch. If I scratch them they get worse and almost start to burn. It’s basically a version of pain. So then I need to either put up with it and hope it passes, put some benadryl topical gel on the itch and hope that helps, go into darkness (doesn’t seem to matter sometimes, the itch still happens!), put on a special sun protective jacket (even though it’s ANOTHER layer and might overheat me and irritate my MS–ACK!), or I need to find a Boob Shield (at least) for goodness sakes!

I can’t help it. I’m telling it like it is. They stick out there further than anything and so then they get affected first apparently and then they’re itchy. That’s all I can come up with. Not too fun when you’re wearing a bra. But then if I’m not wearing a bra the loss of sun blockage affects me and that doesn’t help either! It’s a true conundrum!

So I’ve decided that I need to write an email to Sun Precautions (their clothes help immensely) and request that they start making boob shields with the same fabric. I don’t want to wear another layer (one of their jackets) or a long sleeve shirt of the same brand, I just want to cover my boobs. Is that too much to ask?

Anyway, that’s my rant. The sun is frustrating but it’s not my enemy as much anymore. Not only have we come to terms but it helps to have the protection I do have. I want to keep liking the sun. I don’t have any control over it. And it helps that the treatment I am receiving has greatly improved my ability to be in the sun more without getting AS uncomfortable. But boob shields would probably help a lot. Just putting it out there.

And now that you all know about my itchy boobs…I hope that is not all of you think of when you see me again.