Happy Friday! Oh thank goodness! It’s been a hard week. My daily moments of peace helped me get through it!
I hope you all have a wonderful weekend! We all deserve it!
Happy Friday! Oh thank goodness! It’s been a hard week. My daily moments of peace helped me get through it!
I hope you all have a wonderful weekend! We all deserve it!
…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.
It’s that time of the week again! I’m feelin’ kinda ballady today. So let’s see what I can come up with:
1. Foolish Beat By: Debbie Gibson
I LOVED THIS SONG when I was younger! OMG! I thought it was so deep and heartfelt. That Debbie. She had me obsessed with boys I think just from this song. Oh the heartache! As for the video, gotta love her dancing on the stage at a concert and she’s basically in silhouette. Cute. It occurs to me watching this that she’s a bad lip syncher as she sits in the cafe. LOVING her big hair and shoulder pads! Is this her big acting debut? What’s with all that crazy white fabric she’s wearing? And that huge bow that’s going to overtake her head? So many questions! Classic: the tears on the left side of her cheek. Too much!
2. The Flame By: Cheap Trick
Ahhhh the big hair bands. Gotta love ’em! Hey they’re just having fun playing their instruments! You mean not all music videos from this time need to be really dramatic? And just in case we forget we’re watching Cheap Trick they make sure they paint their name on the floor they’re performing on in the video. You never know. We might forget. Feels like I’m at a middle school dance again. You know, those awkward slow songs when we were only allowed to slow dance as long as we had at least a foot between us? OH and who on earth do we ask? Will he/she dance with me? I always wanted a boy to sing this to me and insist that they would be the The Flame.
3. Could’ve Been By: Tiffany
Who knew her last name was Darwish? Just learned that. Tiffany was the first music artist I ever spent money on for myself. She was my first music cassette tape. I was so proud of myself. And I thought she was so much better than that Debbie Gibson girl! I used to do concerts for my parents with her songs. What’s with her waving on the stage so much in her video? Was she worried we’d forget about her? Wow. Sing with her nose much? Whoa! That is a puffy jacket she’s wearing. Oh the things that could’ve been…
4. True By: Spandau Ballet
What a name for a group! Don’t we all know this much is true? How can you not love the cool lighting behind the screen? The close up of the lead singer’s face on camera singing to me is kind of scaring me. I can’t help it! Gettin’ a kick out the suits. Kinda cool lighting throughout actually. Sure. And then there’s the cool sax guy with the big golden bangs playin’ his solo. So deep. I don’t think I realized how long the song was. Wow. 5 whole minutes of knowing this much is true.
5. We Are the World Live *Written By: Michael Jackson and Lionel Richie and *Produced: Quincy Jones and Michael Omartian *Sung By: Bazillions of Music Artists
Live Aid! 1985! Who remembers how BIG that event was or how monumental it was to have so many musicians in the same place at once singing for a greater cause?? Still gets me. I’m choked up now re-watching it. I mean, how can you go wrong with Lionel Richie, Stevie Wonder, Paul Simon, Kenny Rogers, Tina Turner, Billy Joel, Diana Ross, Michael Jackson (very sparkly in the video), Dionne Warwick and the list goes on and on. “It’s true we make a better day just you and me.”
OK. I think that was deep enough. I have fulfilled my ballad need. Enjoy!
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.
When I look back on my childhood it feels like I was always sick for some reason. I either had a cough or a cold or I was sneezing or I felt nauseous (I would say it was in my chest and now I’ve learned that’s acid reflux) or something. There were also times I didn’t understand what was going on with me but I knew I wasn’t feeling well. I felt “weird” as I would say and I still say sometimes now.
My first memory of “not feeling good” is probably when I was six years old. My mother says she remembers me having sick times before that but I think that’s when I started really noticing how I was feeling and how much it was affecting me. I believe I had something like 23 times of “feeling sick” in first grade. I know I missed a lot of school. I feel very fortunate that my school didn’t hold me back a grade for missing so much of it. I couldn’t help it. I would get a cold (probably more allergies than anything but we didn’t know it at the time) and then it would ALWAYS travel to my lungs and I’d start the coughing and once that started I was in for it. The cough was like a “bark cough” and I still call it that now when it happens (much more rare thanks to knowledge and medication). Lots of times there was wheezing and feeling like I just couldn’t get enough air. It really felt like there was a monster in there trying to come out. I’d wake up in the middle of the night with horrible coughs and a lot of times I couldn’t breathe through my nose which made it even worse. I was miserable.
Numerous times my parents would get me up in the middle of the night and we’d go to the Emergency Room because my cough was so bad. Numerous times we were sent home by doctors who told us there was nothing they could do. Not once did they mention that I might have asthma. Not once did anyone say that I had a sinus infection. Not once did they say there was anything they could for me except maybe give me cough medicine to knock me out…I think. I couldn’t breathe without coughing. I know they heard my wheezing. I know they heard my coughing. There was no way to miss it. I’d be in school and in public coughing like crazy and the looks I would get. Everyone thought they would catch something and that I was infectious. I couldn’t be quiet. They would say to leave a drink by my bed. They would say to give me a warm drink, that might help. They would say to give me whiskey (probably why I don’t like alcohol much at all) and I’m sure it was just to knock me out. I don’t think anyone mentioned an inhaler to at least give me some relief until I was 16. It was awful for all of us. I know my parents did the best they could for me. They tried really hard to get answers so I could have some relief. So I just kept blowing my nose and sneezing and coughing and suffering and it felt like a really vicious cycle of sickness.
It wasn’t until I was 16 (and now that I’m thinking about it probably a few years before that) when I was playing field hockey that a doctor said that perhaps I might have exercise-induced asthma. I can remember never feeling like I had enough air to do anything. So imagine running around and trying to play and starting to wheeze and run out of air. For the longest time I thought that was normal. No doctor that I could remember up until then had paid much attention and would send me away as if it was just the way it was. I just didn’t understand how the other kids/players could handle doing anything. It really was a struggle at times. I somehow just kept pushing through it. I had to deal right?
I can distinctly remember asking this doctor at 16 if me being short of breath was normal. He sat back in his chair and looked at me in deep thought. It really was monumental to be paid attention to at all about my breathing at this point. He didn’t discount what I was saying and he said he thought I might have exercise-induced asthma and to try to take a certain inhaler. I don’t even remember what it was anymore. I was blown away. I think that started my journey of being blown away about having any answers. You mean, there really is something wrong. I’m not totally out of my mind. (Well, about this anyway.). It was scary and such a relief at the same time.
So back in field hockey I’d take my inhaler when needed. My coach knew and understood and you know what? Life got a little bit easier. I wasn’t a good player really but at least I could participate and I wasn’t suffering as much. Maybe this doctor had something. I mean, my grandmother had asthma. Why wouldn’t I? But you see I only had exercise-induced asthma I thought. Using my inhaler when I exercised didn’t stop me from getting sick and coughing and blowing my nose and still wheezing.
When I was 18 I met a doctor who listened intently to what was going on with me. She pulled out a pamphlet on asthma and had my mother and I read it. I was in awe. It was describing me. It talked about the coughing and the wheezing and the sneezing and the full sinuses. I couldn’t believe it. There was an answer. That’s when I started my medical journey thinking I had asthma and starting an inhaler regimen. Not long after that I saw an allergist (hmm, wondering how much of one he really was because he didn’t address my allergies but anyway) who listened even more to me and did a breathing test that I barely passed. I forget what it was called. Turns out I was only breathing at 30% lung capacity. He couldn’t understand how I was breathing at all and functioning. He also looked in my nose (first doctor to do that I believe) and wondered how on earth I was breathing through my nose at all. So he started me on a major regimen of nasal sprays and more inhalers. I felt so much more relief. It was unbelievable.
But see that didn’t explain everything. It always felt like there was always something missing. What about the rest of the reasons I didn’t feel well? What about those times I still felt “weird” as I talked about in the beginning. I can’t explain them. I didn’t (and sometimes still don’t but think it’s connected with the lupus–diagnosed in August 2010 so how many years later?) understand them or know how to describe them or that it was abnormal. It was just the way it was. I could feel better? I also had those weird nauseous feelings in my chest as I talked about too and that didn’t help anything. I didn’t know that’s what acid reflux felt like. AND my cough and sinus issues were still not really resolved. To really confuse the story, there is still a big discrepancy between all of my doctors past and present (and heck probably future) about whether I have had asthma, if I have the kind that comes and goes (apparently it can do that–I had no idea), if I have it now (no inhaler since I think December 2010) or if it was JUST sinus issues with post nasal drip being the major culprit all of these years (for a much later Blog…) or what it is.
This is how I lived until I was 25 and the MS symptoms started. I’m still convinced I was feeling lupus at that point too but it hadn’t been clearly detected yet. I believe I have been feeling some sort of lupus or connective tissue disorder/disease symptoms since I was at least 6 years old.
Writing all of this really helps me see how far back my resentments go about not feeling well. It helps me understand that my body needs lots of love and it will take as long as it needs to to get better now that so many of the puzzle pieces are falling into place. I can also see how much trust I lost in any medical professionals way before trying to get an MS diagnosis or whatever it was going to be in 2002. I knew that I had to ask questions and that blowing me off didn’t help anything. The past experience told me to keep on it, that something wasn’t right. Tingling on the bottom of my feet wasn’t normal. Really. Plus, I didn’t have an awful childhood and wasn’t completely miserable. I was still a kid who did fun things. It was just really hard physically quite a bit. Now I know why I’m so tired of being sick and tired.
OK. I feel like I can get on with the rest of the Diagnosis story. I just had to relive all of that a bit first.
It’s Friday! That means it’s time to reflect on my moments of peace throughout the week. Everyday I make an effort to take pictures of nature. These to me are true moments of peace and great opportunities to take a deep breath. It’s been a very draining week with lots of ups and downs so these moments really helped a lot. And tonight I get to do a Home Sleep Study Test so posting these will help me to stay focused and relaxed. I can’t help but wait for it to be done but until then here are my pics for the week:
Have an awesome and peaceful weekend!!!
I can! I can! Yeah. Go me. I can spell the name for a fancy eye doctor. OPHTHALMOLOGIST. It is tricky. I’ll give it that. Whoever heard of a word with a “phth” in the middle? And then there’s that extra “L”? Crazy.
Why do I see one of those? Well, turns out that both multiple sclerosis and lupus can affect the eyes in different ways. It wasn’t until I was diagnosed with lupus that my Rheumatologist (Ack! another crazy spelling!) sent me to an Ophthalmologist. The medication for lupus can also affect my eyesight too in its own way. Well isn’t that just fabulous? Of course my eyes would be affected by what’s supposed to make me better. What isn’t affected? Oh and I’ve seen a Neuro-Ophthalmologist (I tell ya. When you have diseases you get to see doctors you never even knew existed.) and that was right before my lupus diagnosis but no one knew I had lupus so I was only told I was having “eyeritis” (or something, can’t remember exactly and I’m not so sure about the spelling) which was just basically inflammation of my eyes (So not fun. I think it was all part of my first really bad lupus flare that I’m still recovering from. Thankfully, I don’t have that anymore.)
In all fairness to this “Oph” Doctor (gonna call him “Oph” for short from now on), he has really helped me. I had seen numerous optometrists in the past due to my extreme nearsightedness in one eye and extreme astigmatism (help, too many fancy words!) in the other eye who I believe were just looking for money. Sure they were nice but the last one I had NEVER mentioned that I have a certain syndrome (can’t remember all fancy names or my head would explode) that creates dry eyes and dry mouth (hmm, could’ve helped me get a lupus diagnosis sooner because it is connected to lupus and it’s a symptom but I digress) and that was PROBABLY (gee you think?) the reason I can’t wear contacts anymore. I wore contacts before? Oh yes I did and I LOVED them. The world was a better place to look at, that is, until my contacts started popping out of my eyes because my eyes were so dry! And to top it off, the contacts I needed to wear were only available by special order and were especially custom made just for me and they cost a fortune! Imagine how I felt when I couldn’t wear them anymore? It was heart breaking and I hated that I had spent so much money on something I couldn’t even use.
ANYWAY (back to the subject at hand Nahleen) this Oph Doctor couldn’t believe I had been wearing contacts or at least been TRYING to wear them and said that he’d known Optometrists to go ahead and have patients buy contacts they can’t even wear because it makes them more money. This Oph Doctor on the other hand is a doctor who is very concerned about the eye itself and the health of it. When I told him I had both MS and lupus he seemed pretty nervous at first to treat me and get it right but with a whole heck of a lot of tests I learned that the MS, lupus and medications have not damaged my eyes at all. I also found out that my dry eyes were causing me problems and were the probable reason for light sensitivity (with any lights and the sun–of course) or photosensitivity of the eyes and my eyes needed healing. How did he help me with that? Well, I started using Restasis eye drops (they’ve helped immensely) and every three months or so he puts punctal plugs in my tear ducts.
Yes, that’s what I said. He puts plugs in my tear ducts. They’re tiny (he must have GREAT eyesight) and they help me trap the tears in my eyes to help moisten them. It’s not that I don’t produce any tears, it’s that I produce more than my fair share and the tears escape my eyes and then I’m back to dry eyes. I don’t know the exact details but it is crazy how he does it. Why every three months? Because they disintegrate after about two and a half months and the three months is just to be safe just in case the old ones are still there. The best part about going every three months is that we are also able to be productive with my eye healthcare and we can do follow-up medical tests to make sure there is no damage being done somewhere we don’t see it. It’s all kinda fascinating when I’m not going through it and I’m able to think about what they know about my eyes. Hooray for medical science and computers!!! Let’s keep my eyes in order.
So my whole point about all of this is that I went to see the Ophthalmologist (hey, I think I spelled it right again) today for my three month check up and it all went really well! I’ll admit, I have been apprehensive about the people in this office including the doctor because they have been very hard to read and I need to be able to read people. I can’t help it. After today I know that I’ve made the right choice staying there. I’ve been going there for almost a year and a half and the Oph has changed my eyes so much for the better. My eyes feel so much more relief and he said today that my eyes look a lot better than they did and that they are definitely healing. He says one day I might be able to wear contacts again but we’d have to trust that my eyes could moisten themselves well enough. I dream of that day. Glasses can be so pretty now with very fashionable frames and the “ultra thin” style of lenses (thank goodness for this process because otherwise I’d be wearing bottle caps–ugh), but they don’t help me peripherally, they’re not comfortable, they constantly need to be cleaned and I’m always having to push them up my nose. Not to mention that they fog up every time I’m hot which is most of the time so I’m constantly trying to cool them down. However, I am thoroughly glad to be able to have glasses too. It’s not fun to always be blind. I like eyes. I like seeing.
And when I’m connecting with people and smiling and even asking how they’re doing they tend to tell me a lot about what’s going on with them. Also, if I’ve known them for awhile and they’re used to me, they warm up even more. Today I learned that the poor technician has some sort of crazy lump in her mouth that the dentist says is a viral infection (what the heck? I had no idea that happened. Learn something new every day even if you don’t want to.) and that the Oph loves a restaurant called The Veggie Grill and it’s just up the street and I should trying it and the kale salad they make there is really good and he couldn’t stop talking about it!!! He was also very excited to be able to get out and go to lunch today because he doesn’t get to that much. And you know, I should really try the Veggie Grill sometime. Give it a chance. (He saw the face I was making about the kale and had to point it out). Then we joked about going to the Mexican restaurant near there and passing out tortillas in the office (how’d we get there?) and so on. This is a doctor who was sooooo shy at first and clinical and now he’s joking with me and talking all about food. We’ve become best friends I guess.
So what did I do afterwards? I took a jaunt to The Veggie Grill and enjoyed the sunshine and the beautiful weather in Santa Monica, CA. It was lovely outside. And I have to declare here that the “Buffalo Chickin (veggie chicken I guess) Salad” was absolutely fantastic! I think it was the best salad I have ever had! So yummy I ate all of it! I have got to go there more often. Most of my doctors are either in the same building or just up the street from the others in the same area and I have been missing out on yumminess! Oh and did I also mention that it was healthy?! Wow. Yummy and healthy. Can’t beat that.
All in all a pretty good appointment week. That’s so nice considering that in the past it felt like all appointments I went to were crappy and there was always more to digest and more to do and it was never ending and oh so overwhelming. Yeah, the appointments are all still pretty much happening but I’m getting better. Yes, I’m putting it out there.
I’M GETTING BETTER….bit by bit…I hope my body hears me.
I need some zig in my zag, some zap in my zip. I’m feeling kinda drained and I need a pick-me-up! Who’s in for some more good ole ’80s music? Nothing like a walk down memory lane to getcha goin’.
1. Get Into the Groove By: Madonna
I totally forgot this was a song from the movie “Desperately Seeking Susan”! Watching clips of it in the video reminds me how messed up that movie was and just how much I loved it! I wanted to be cool like Madonna too! This song holds a lot of memories for me because it was the first song on a cassette tape that I used to record the “cool” Boston radio station way back when (hmm–I was only 8 so you can do the math) and I can still very clearly remember the DJ saying “I’ll prove it. I’ll prove it.” and now it is still a part of the song for me. I always have to say it out loud or in my head. Pretty funny. And it also was the song my lovely cousin and I did a music video to at one of our old favorite haunts, Hampton Beach, NH. Hey, New Hampshire peeps, do they still record music videos there? And don’t tell anyone but I still have the VHS of it here.
2. Mr. Roboto By: Styx
So many memories with this one! My sister and I would play this on the jukebox at our favorite pizza joint as kids and I don’t remember if we danced but I bet we did! We still go back and forth with “Domo Domo” (is that even the right spelling?) and “Secret secret I’ve got a secret.” sometimes. And I hate to break it to you but he says he’s Kilroy! Kilroy. Kilroy. Watching the video I’m impressed with the theatrical lighting and I didn’t know you actually saw him! And look, there are a bunch of them! Is the man he becomes/or actually IS wearing a full purple/pink body suit? Too much!
3. Shout By: Tears for Fears
Another one with lots of fun memories attached to it. My sister and I used to sing this in the backseat of the car, no actually I believe we would SHOUT it. Go figure. I mean, that was the name of the song after all. So much fun! And look at that mouth! You know, these two brothers say they’re talking to me so do they want me to shout or talk? I’m so confused! Listening to the words and seeing the video I realize how deep the song really is. Weird. Guess I was too busy shouting before.
4. I Love Rock n’ Roll By: Joan Jett
I wanted to be as cool as Joan Jett! A true ’80s classic if there ever was one. Who doesn’t love rock n’ roll now because Joan Jett said she did? Will you just put another dime in the jukebox baby? Or would it be a dollar now? Are there even jukeboxes? And hey it’s a black and white video so it’s even cooler. Look at her black hair and loads of black eyeliner! She was so cool! (Apparently this is not the original recording of the song but I’ll forgive her.)
5. Wake Me Up Before You Go-Go By: Wham!
Oh George Michael and that other guy Andrew. It’s not a true ’80s list without adding you I tell ya. How can you not love the white outfits? The background peeps are wearing white shirts that say “Go-G0” (how cute) and he and that other guy are wearing a shirt that says, “Choose Life”. Hmm. Interesting. Not sure what that has anything to do with the song. I sure have missed the rolled-up sleeves style. The next outfit kinda scares me with those shorts. Just sayin’. And what is with those yellow non-glove things??? He just startled me. Seriously, will someone just take him dancin’ tonight? He’s obsessed. And one last word because it has tons of relevance, “Jitterbug”.
Alrighty! Did you have fun? I totally did! I mean, it was so rad! Join in the fun! Share your favorites!
I think this is becoming a regular thing…
Looks like I’m finally feeling up to writing the next part of my Diagnosis story. I kept thinking I didn’t want to write about it today but my mind keeps going there so I guess I had better get it out.
After experiencing what I felt was complete ignorance from the first two Neurologists, I wasn’t sure what to do. A lot of that summer of 2002 is a blur. I realize now I probably wasn’t feeling that well. Summers are my worst time of year for symptoms. I feel heat fatigue from multiple sclerosis and that is my worst symptom. It doesn’t take me long to feel hot. Once I feel hot the heat acts as a conductor to my nerves and the messages get all mixed up (even more) and my body gets really confused, magnifying all physical symptoms I may be already feeling, and tells my brain that I’m feeling crappy. Crappy is whole lots of bunches of types of fatigue. It’s various types of pain. It’s tingling. It’s stiffness. You name the MS symptom and I feel it. Suddenly…everything…is…in…slow…motion. I feel like a different person. EVERYTHING feels like a major effort. The body can go through pseudo-exacerbations (exacerbations are when the MS freaks out in the body–more on that in a future Blog) and yet no damage is done. It’s REAL though. It’s not all in our minds. We with MS are not imagining it.
And then there’s lupus and heat. Heat doesn’t directly affect lupus but if our bodies don’t like heat in general it will affect it in a roundabout way. What does happen, though, is that lupus and the sun don’t get along. It is as if our bodies are allergic to the sun. We with lupus (STILL CAN’T BELIEVE I HAVE BOTH DISEASES) can get really itchy. We can start feeling tons of BLAH, we can feel lots of types of achy, tons of various fatigue issues (heaviness is a big one), our joints can hurt a lot, we get sensitive to light and the list goes on. As someone with lupus, it is best for me to stay as out of the sun and the UV rays AS MUCH AS POSSIBLE. My current Rheumatologist couldn’t stress that enough when I was first diagnosed with lupus in August of 2010. STAY OUT OF THE SUN is what she told me over and over. I now have to wear high quality sunscreen all over, try to wear longer sleeves (hard to do when my arms get hot with MS and symptoms react), wear pants and no shorts (I compromise with capri pants a lot) and hats. It’s all about hats. Sun sensitivity otherwise known as photosensitivity are pretty dangerous for those of us with lupus. We just gotta be really careful. So if you add up MS and lupus together in the summer then that is a really BAD combination. We are talking about the sun setting off the lupus and making me EXTRA HOT and sensitive and when I’m hot the MS acts up and I am in for it.
So really, how did I feel during that summer of 2002? I don’t remember. Why? I’m guessing it’s because my multiple sclerosis was acting up in the heat (and I didn’t know I had it) and I have a big theory that I had lupus then too. Actually, I think I’ve had lupus or something like lupus (as in another sort of connective tissue disease) since I was six-years-old. I can think back to instances when I felt really strange symptoms and wondered what was wrong with me and thought it “mustbe normal” because I couldn’t explain it (there are not enough words to describe physical symptoms and sensations. I struggle with that all of the time.) and this happened all the way until almost two years ago. That summer had to have been a real struggle for me because I didn’t know about my health but did I notice? Of course not. Not enough for me to do anything about it. I was twenty-five. I had the world to conquer. This was it. I pushed so hard and was a go go go type of person (I still am. I work really hard at slowing that down.) and there was no time to stop.
I know I went to other doctor appointments and had other tests done. I had an HMO at the time so it was slow-going with getting anything done due to all the approvals and referrals needed and trying to find my way through the maze of red tape. I was starting to become an expert at having blood tests done and trying not to get too worried about the outcome EVERY time there was a new test. I think it is important to note that it was NEVER brought up to me during that time to do an MRI until October of 2002 but I will get to that in another Blog I think. It took the doctors six months to finally get the idea that PERHAPS it was time to have an MRI done. Plus I think I went to a Dermatologist at the time (not sure how I found my way there now) who reminded me of a robot with glasses. Makes you feel all warm and fuzzy inside doesn’t it? He looked at some weird spots on my back and thought it might be skin cancer (What the heck?!!!–was all I kept thinking) and didn’t want to do any biopsies of it because it probably wasn’t (Hmm. HMO influence again? Wouldn’t want to try to have another test done and spend the money…) anything serious and he sent me on my way. Scary!! It took a therapist I was seeing then to convince me that it was BETTER TO KNOW THAN NOT TO KNOW. True words of wisdom I still use to this day. If I didn’t know then I’d always wonder and I couldn’t take any chances. Skin cancer is not something to just brush aside. Imagine. Ugh. So I did have the biopsy done (freaking out the whole time) and found out I didn’t have skin cancer but that I had a hair follicle issue. OH. Well. That’s a bit different than cancer. And boy it sure was nice to have that answer.
I vaguely remember sometime during that summer, going to see an Infectious Disease Specialist (have seen two on my health journey and am no impressed) because where I come from, New Hampshire (and in Los Angeles, CA at this doctor), there are lots of yucky ticks who will bite and spread lyme disease and that maybe the tingling was coming from that. In fact, I think I had a generic blood test done to check for that with another doctor and it came back as positive. OK. So I had lyme disease (inside I know I was freaking out but at least I had an answer I thought). I went through the HMO rigamarole yet again and finally got in to see this no personality doctor. The doctor took one glance at me (sure was thorough I tell ya) and decided that I didn’t have it. I insisted that he take a real look at me. He asked me if I ever had the red ring around the bite or anything and I said no, that I didn’t remember being bitten anyway. He shook his head at all of this and said that the generic blood tests for lyme disease usually have a false positive so not to believe that. WHAT THE? What does that mean? Why is the test done then? Why put us through that? He still seemed to brush me off but with some pushing from me (yes, thank goodness I was assertive and stubborn) he did a more intricate blood test to find out more that he trusted would be accurate and it came back negative. Just as he thought right? Well good for him. Gold star for proving he’s right but now what? So why do I have tingling on the bottom of my feet again? CAN SOMEONE PLEASE TELL ME THAT? These were all thoughts I was having. No wonder the summer was a blur. There was a lot of struggle (or crap) like that going on. Very frustrating.
I think it was sometime in the late summer of 2002 that I first met the Heroine Doctor of my story, the first Rheumatologist I ever met. She was this really nice older lady who took me seriously. She listened, she tested me, she looked at my hands and joints. She scrutinized me and really stared at my physical features to see if she saw anything weird like any rashes or irritated joints. I HAD NO IDEA WHAT SHE WAS DOING OR WHAT SHE WAS UP TO. It was pretty scary but she was really nice and compassionate and told me not to worry and she’d help me figure this out since no one else would. I believe she herself had been going through some really serious health problems and understood what it’s like to go through the process of not finding out and all of the fear that it generated.
Some of those blood test results did come back as positives of certain elements (I’ve learned that it’s all about elements of the blood that come together a lot of times for diagnoses but I had no idea what on earth she meant) but she really checked me out and just couldn’t diagnose me with lupus at the time. I remember she apologized profusely for that. She said I should get ready to look for it and think of it for the future. That there are something like eleven things that indicate lupus and you have to have seven of them or something for it to be a positive clinical lupus diagnosis and I only had four or something. I can’t remember the exact details. What I do remember is that she tried really really hard to get me answers and do for me what she could. She was up front with me and she listened. That’s a big thing. She was a true listener. I wish more doctors LISTENED. I try to remember when I think back on that experience that this was almost ten years ago. That is a long time ago when it comes to medical science. They have made great advances and are now able to find out more information and they have so much more knowledge now than they did back then. So she asked me about my symptoms and I didn’t know what the heck she was talking about and told her at this point that the tingling that I had been feeling on the bottom of my feet since April of 2002 was not constant and would come and go (Hmm. A sign of relapsing-remitting multiple sclerosis maybe?) and that I didn’t think I was feeling anymore symptoms. (I’m sure I was actually. I was in denial. Don’t stop me. There is nothing wrong. I was tired. Aren’t we all? I had some pains. Wasn’t I getting old? I was twenty-five after all. I was clearly already showing signs “old” wasn’t I? OM…the NOW Me says probably not…). So she told me to try to take care of myself and come back if anything else came up. We’d figure this out together.
I did end up making an appointment to see her again in October of 2002. More to come in the next Diagnosis Blog…
Thank you all for reading. Writing about this brings up a lot of feelings and memories that are hard to process but since I’ve been doing this writing it has really helped…
“Don’t get too used to it. We doctors don’t want you to get the wrong idea. I mean you might expect us all to be ready on time and I’ll get in trouble”, my spitfire Cardiologist quipped as he walked into the Exam Room right on my heels.
I had just mentioned to him that I’ve never had a doctor so ready to see me in the Exam Room. Just before, the Medical Assistant and I noticed that my doctor was RIGHT behind us. I mean, RIGHT behind us as he followed us into the room. We both said hi to him and he said, “Hi. Don’t worry about me. I’ll do my best not to run you over. I suppose I could race you into the Exam Room if you like.” We chuckled and that’s when I noticed and commented on his LACK of tardiness. “Wow. I don’t think I’ve ever had a doctor almost beat me into the room and be ready to get going”.
After the small talk, he stayed in the room and the Medical Assistant hadn’t even had time to check my vitals, my blood pressure and pulse rate and he was already asking me questions. Well that was another first. She was checking my blood pressure while he was making a call on his phone to some automated system we all got to hear on speaker phone and he continued to multi-task while my arm was squeezed in the blood pressure cuff and he started asking me questions. You know, the old me (the Nahleen who hadn’t gone to that many appointments years ago) would not have been able to deal with that and I have a feeling my blood pressure would’ve skyrocketed through the roof but you know what? I just went with it and somehow my blood pressure was a better reading than it’s been in quite awhile. However, my pulse rate was high but wouldn’t your’s be with all of that hectic silliness?
So with the slightly high pulse rate the Cardiologist asked the Medical Assistant to do an EKG and she sort of motioned for him to leave the room and he actually did and had no problem with it! The Medical Assistant talked to me during the whole procedure about my name and where it came from and how exotic it sounded and that I must be so “exotic”. Hmm. Well that was a new one. Don’t think I’ve ever been thought of as exotic and I joked about that and told her her it must be the purple hair talking because being that I’m caucasian and she wasn’t (her name was Bing–found out later as I was leaving and she said, “You know, like Bing Crosby?”–and I thought that was so cute) and I’m from New Hampshire I didn’t feel too exotic. I did tell her I’d just go with it. Sure, I’m exotic. Okay. Thanks. With all of this chatting I think it helped me to calm down quite a bit. I told her I have a long history of “white coat syndrome” and although I’m much better about those darn white coats (she was wearing one too) they still get to me and she laughed and said, “Well my doctors have a habit of doing that to my patients. It happens all the time.” She was really sweet.
After the very painless EKG, I was ready (I ALWAYS have to be ready. Working on that but I can’t help it.) to have to have more tests done and the doctor came in, listened to my heart, listened to my lungs and asked me what else he could do for me. (By the way, that call that was on automated hold he told me was a call to make sure he was still on for his scheduled surgery–on someone else’s heart–this guy rewires hearts for goodness sakes–and he apologized profusely for making this call while in the appointment but he needed to make sure to be on “these” people to keep them “on time” for 1:30pm. This guy tries really hard to be on time. By the end of the call he was still scheduled for his “case” as he called it and all was running smoothly.) I told him that my Neurologist (he knows him well) was concerned because I had been taking the newer medication for my multiple sclerosis (and the only medication for MS in pill form–incredibly monumental), Gilenya, and that there had been some deaths while other patients had been taking it and that my Neurologist was insistent that I see him (this Cardiologist) and only him to follow-up and make sure I’m okay to continue taking it. On a side note, I sure as heck was hoping I was okay because my only other option was to take an injectable every day and I can’t stand needles (even after 8 years of injecting every other day with another MS medication–I’m sure I’ll get into the medication conversation about MS in a later Blog. I could go on and on about it actually.) and I was trying to avoid that. However, I didn’t like that people were dying while taking Gilenya either. Just a little scary. Then again, my MS health has greatly improved while on it for over a year and I really hated the idea of going off a medication and risking more of a progression or worsening of symptoms with multiple sclerosis. That idea sucked.
The Cardiologist quickly pointed out that he’s known Neurologists to be pretty neurotic (jokester) and that the problem with this medication is that it’s still pretty new in the medication world and because of that there is no real data to pull from when the patient dies while on the medication and unfortunately these people can’t tell us anything and it’s not like they’ve been using a heart monitor 24 hours a day every day to see what’s been going on. Gilenya can cause slow heart rate and that is already known. There’s a big medical review going on to find out if the poor people died from the medication, it’s a coincidence, or if it’s a combination of a bunch of different things. So while the review is happening with the medication, my doctor is making sure all of his patients on Gilenya have their heart health reviewed. Makes sense to me. It’s nice to know if my heart is healthy or not. It’s nice to have a heart.
Anyway, I am cleared by the Cardiologist to keep taking Gilenya and all is good to go! My Neurologist really trusts this doctor so I believe that there are no more obstacles in the way and I’ll be able to move on with my life. I will find out more about that in May when I have an appointment with him. For today, I’m all good! And this guy is so cool and funny that I felt comfortable enough to exclaim, “Woo hoo! No other tests?! I’m clear?” to which he replied that I was okay to go and cleared and he would let my Neurologist know he was not worried about me. You mean I don’t have to do an echocardiogram or wear a heart monitor for 24 hours? No way. I had seen him a year ago to have all of these tests done as a baseline to make sure I could even start the Gilenya MS medication in the first place. And yes, I had to do the extra tests. It was okay. It was nice to know how my heart was doing. I was just so tired of it all (especially at the time) and it felt like such a hassle.
Another neat thing about this doctor is that he made it so easy and distracted me so much in the beginning that I was able to forget how uncomfortable I was in the waiting room. This waiting room was supposed to be designed like a living room decorated with darker walls and plush sofas and chairs with refreshments to drink if we wanted. Somebody really did put a lot of thought into it. I thank them. However, the Receptionist’s Desk was right there just outside the carpet of where the “living room” was supposed to start and I believe she was supposed to be centrally located and she was so loud and so forced into her friendliness and clearly so stressed that it was hard not to have that stick in my butt that she seemed to have. I did my best to stay patient with her and have some compassion because it is clearly a very high stress job but I’ll admit it was hard at times. Plus she was working on a new digital system and everything had to be re-entered so that must not have been fun either. And you know what was kinda neat was that she thanked me quietly for being nice. And then I hate to say it but I’m in my mid-30s and I go to the doctor with a bunch of elderly people. Don’t get me wrong. I like all ages of people but sometimes I just want to feel like I’m not the only mid-30s person with health issues. It can get kinda hard and depressing.
Otherwise, it was a pretty darn good doctor appointment and a pretty darn good afternoon. I took a nice walk afterwards in the beautiful weather and ate a good lunch. Now I’m home writing this. Things feel positive.
I just can’t help but think about what the Cardiologist said and what the title of my Blog is, “Don’t get too used to it.”. I want to. I want to get used to things going well. I have been trudging and struggling on this path of recovery in this more recent downswing (slowly inching towards better) for almost two years and I’d like it to keep getting better. I have hope.