Appointments

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.

“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.

“Do-be-do-be-do-be-do…” the woman serenaded with a flirty flair on the Jazz Station at the Dentist’s Office. She went on to sing smart and witty words as the ensemble played and all I can remember is “Don’t be a party pooper…do-be-do-be-do-be-do” and I believe that was how the “do-be-do’s” went.

And thus was the theme at my Dentist appointment today. Nahleen, don’t be a party pooper. Is the Dentist a party event? Om, no. But it can feel like a party when all goes well with your cleaning and you’re sent on your way. Doesn’t really happen with me these days now that I have multiple sclerosis and lupus.

When I was a kid it used to be that going to the Dentist for me was a breeze. I was a very lucky fortunate kid who didn’t have to have braces and I usually passed my Dental exams with flying colors. Yes, I always had to be the perfect student (still working on that but that’s another Blog for another day). Anyway, I’d get my little kiddie prizes (Where do they disappear to as adults? What prizes do we get? More toothpaste, toothbrush and probably a message to “floss more”? Hmm. Some prize.) and be on my way till 6 months passed and I’d go through it again. Only a few times did a big scary German lady (can’t help it, that’s my memory as a kid) get almost mean with me and accuse me of not flossing (“Yes I did! So there” the Kid Me would think.) and then show me with a mirror how much my gums were bleeding because she chose to be rough with me. Well, at least that’s what it felt like. And then I’d still get my prizes and be sent home only to have lingering justifications about my flossing the rest of the day (and apparently now since I’m still talking about it). Otherwise, it was pretty much smooth sailing. Even as I got older and my wisdom teeth grew in (ow), they grew in straight and grew in well and no one touched them. To this day I still have ALL 4 wisdom teeth. That has to mean I have a lot of wisdom. I just know it.

Now fast forward to being an adult at the Dentist, everything has pretty much gone well. Turns out I grind my teeth (Hmm, stress?) and I wear a night guard. Plus I have a hard time keeping up with the maintenance of those wisdom teeth way back there so I’ve been reminded again and again to be careful back there but any issues have gone away. Well they went away that is until a few years ago when I had only been diagnosed with MS (those were the days) and didn’t know yet about the lupus. I’m pretty sure I remember my Dentist noting that my gums were inflamed and red and that they did bleed and he didn’t know what to say about it. He didn’t think I had anything serious going on and I’m almost definite that he asked me something like, “Are you sure you don’t have lupus?” and I was like, “Yeah I’m sure. Nope, I don’t have it.” Well now wasn’t that interesting…

Then almost two years ago when I was diagnosed with lupus and I told my Dentist about the new diagnosis, he started looking at my gums and said that now it all made sense. My gums were swollen and inflamed because I had lupus and I was having a flare. Plus, I found out that these gum and mouth symptoms are not just signs of lupus BUT they can also happen FROM the medications I’m on and specifically the ones I take for a lupus treatment. Well isn’t that GREAT. Awesome. Gotta love that the medications that are supposed to help you in some ways can harm you in others. Happens to me all the time. So he told me I probably have the symptom of “dry mouth” (can’t think of the official name right now) and that he’d recommend I use the toothpaste Biotene which is used for dry mouth and hopefully that would help. I’m still using that to this day actually. Thank goodness for those types of options now. And then he thought my teeth were getting worn down in the back of my mouth so he prescribed a dental toothpaste called Prevident to help with that and help strengthen my teeth. I was not happy I’d need a doctor prescribed toothpaste let me tell ya. I had no idea it existed and here I go again. More stuff to add to the regimen. Well, after I got over that next idea of what I thought a burden was (not so much a year later) I found it actually did help and my Dentist/Hygenist started becoming happier with how my teeth and gums looked in general. Well yay! Go me.

And finally getting to today the appointment went well. I don’t like to go now that I have issues and am not even close to perfect (Geez.) and because physically with lupus and MS it’s hard to hold my jaw open for that long and it starts to shake. Plus it might get stuck being open and it hurts. If my gums are inflamed then that’s no fun either. I’ve learned I have to speak up to the Hygenist/Dentist as much as possible about what’s going on with me to help alleviate any mental/physical discomfort. Turns out I had a new Hygenist after having the same one for at least a couple of years and I was like, “Well great. How will this one be? Will she be another scary German lady? I guess now I’m gonna have to go over ALL OF MY HEALTH HISTORY AGAIN with someone else…” I was only Ms. Grumpy Pants for just a bit about it because the new Hygenist was very sweet, charming and tried really hard to make me as comfortable as possible after I talked to her about everything. Plus when I had to do x-rays (Ack! So hard not to gag!) she was quick and tried to do a mini guided imagery with me, “OK. Now breathe through your nose. It’s only gonna be a few seconds. You’re in Hawaii right now.” That idea of being in Hawaii with x-ray thingies in my mouth didn’t really relax me but the idea that she was trying was very sweet. And then we travelled to “x-ray Bahamas” and “x-ray Italy”. Plus she joked a lot (She and I had heard the flirty crooning woman sing “Don’t Be a Party Pooper and had quite a giggle about it. Don’t recommend giggling with dental utensils in your mouth by the way.)and kept telling me to take a break if I needed to. And no she didn’t shove a mirror in my face to show me what I had supposedly done wrong. She was compassionate about it all. And then to top it off she really started my party going by saying I was doing an “Amazing job” working on my gum and teeth maintenance and that everything looked really good. So yay me! Woo hoo! Time to party! Good news!

AND THEN the Dentist came in to do my exam. He’s a funny guy. Pretty jokey himself. Quite a jokey office now that I think about it. Anyway, he too has lupus but the skin kind (can’t think of the name of it) and thinks of lupus every time he sees me. Weird to have that connection. He looked at my x-rays and really studied one slide I couldn’t see (Gawd!) and then told the Hygenist to make a “Note” at “17 blah-blah-blah (you know, teeth and dental talk)” and just to make a “Note”. Uh oh. Red flag. But then I forgot the red flag because he was worried I might have some weird thing going on with what I thought were just mega-chapped lips and that was another foreign word name and I got distracted and suddenly my party was deflating…there goes the balloon fizzling out of air. I think the Dentist saw I was getting worried and quickly said not to worry and to just keep an eye on my lips and we’d go from there. He really didn’t think it was a big issue. Really. Seriously. It was okay. (Now that I think about it, what did I really look like for him to try to cheer me up so much?). So when he left I remembered I didn’t ask about tooth number “17” and the Hygenist said that it was my lower bottom wisdom tooth (cue dramatic movie music) that might be forming a cavity and that they were just going to keep an eye on it. Oh. Great. So nothing to worry about now but maybe for the future.

That sounds about right doesn’t it? Not only does that sound like what I go through all the time when it comes to MS and lupus but isn’t that what life is? That idea of perhaps something might be a problem in the future is very scary. I go through the process of letting go of that fear all the time. However, it still bothered me. I’ll be honest. Yeah, I’m okay. Everything is okay just for today. I think the real point is what that savvy woman sang to me (and only me because I rate) “Don’t Be a Party Pooper”. I can still have a party because I’m me. I can still have a party because both the Hygenist and Dentist didn’t see any real issues to address now. I got to leave without having to add anymore medications to my daily regimen (and let me tell you there are more than enough), I didn’t need to schedule an appointment to fill a cavity, my teeth got cleaned (and I’m so grateful for dental benefits right now) and I heard what was really a very silly jazz song that I will now leave you with:

“Don’t Be a Party Pooper. Do-be-do-be-do-be-do…”