Category Archives: Doctor

Seizures and Blood

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Yesterday, I had a general check-in with my Rheumatologist to check and see how the Enbrel and Prednisone pack had worked out and in general how I was feeling. I never before arriving that I was going to have to deal with labs. For some folks, having blood drawn is as easy as brushing your teeth. I am NOT one of those people.

You probably remember from some of my previous posts, just how much I dislike  HATE DISDAIN LOATHE being pricked with needles (in fact the post was entitled,I hate needles. seriously.”… which is actually rather humorous considering I have to inject myself once a week (although sure click self injectors ARE MUCH BETTER than syringes, I will say).

I don’t know what it is, but I could never handle watching people have needles stuck into their arms or hands- it makes me queasy, uneasy, and nauseous. In fact, even as I was looking for an image to include in this post, I tried to find one of someone having blood drawn and I started to feel all clammy and nauseous. Thus, you are stuck with an SI joint image- because well, the SI is important to me :0)

So back to my appointment. I checked in and my Rheumy told me that we should keep on the path and see if Enbrel can’t continue to improve my situation. If by the next time I come in, I do not significantly improve, we will look for another method (I am confident that Enbrel will work). I will continue on with my Voltaren gel as well as my Nambumetone. I also talked to him about my stupid cold sore. I got it last weekend and it’s hanging around. He told me that it should go away soon, wrote me a prescription, and told me that prevalence of cold sores is normal (whatever “normal” is). In addition, he inspected a hard lump that I discovered under my right lower jaw and determined that it appears to be an infected lymph node. Bacteria gets into the cold sore and infects your lymph nodes (awesome). Again, it should get better on its own over time, but if it doesn’t, I’m supposed to let him know.

Then he said that phrase that I l.o.a.t.h.e.: Did I get labs last time you were here? No I replied in a very sad quiet voice. He chuckled and said we should get them and go from there. So, I begrudgingly went out to the nurse’s station and sat in my chair and instantly felt the anxiety coming on. I tried to push it out of mind reminding myself that the last two times, I didn’t black out at all. The nurse was super friendly and put the needle in quickly and started talking to me. In an effort to avoid the “black spots”, I looked up at the ceiling. Everything was fine until it wasn’t.

All of the sudden I felt myself passing out. I state such and then what happened next is really hard to explain. I felt a jerky sensation and everything was moving really fast and I couldn’t stop my body from “freaking out.” Then everything went dark. I woke up to smelling salts, 4 nurses, and my doctor standing over me asking me if I was ok and how did I feel, etc. They had my legs hoisted into the air (thank god I wore pants, right?) and brought out orange juice, the blood pressure machine, chocolate, and fluids. They proceeded to get me right side up and seated and then calmly said that I had experienced a mini seizure. That they could be brought on by extreme stress and anxiety. It was one of the scariest moments of my life. I don’t like not having control. Yesterday, I lost controlI would prefer not to have that feeling ever again.

So, a while later, I left the doctor’s office with their consent that I was OK. I went straight to the deli and got a sandwich. Then I felt terrible all day yesterday. Now I don’t ever want to go back to that office again but I know I will and I will freak out the next time I get blood drawn. Ugh. Why hasn’t someone developed a tool that can run over your skin and “scan” your blood and automatically read the test results. I’m going to invent that.

Either that or get a prescription for Valium.

Voltran Gel for Osteoarthritis

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Voltran gel. So, it’s not really called Voltran, but it’s close, so that’s what I’m calling it. On Wednesday, I got to meet with my Rheumy for a much anticipated appointment. Over the past two months, as you know, I’ve been off Enbrel and not visiting my Rheumy because of a Lyme’s Disease and Mono diagnosis. I was really worn down, frustrated, and stressed out when I showed up. The nurse who is always there and works with me (the same one who taught me how to use Enbrel) put her arm around me and led me back to the exam room. She asked me how I was doing and I was completely honest with her. She was so understanding and wonderful. She told me to take a deep breath and said that we’d figure it all out. My pulse was good (72 beats a minute), but my blood pressure was up. The last few times I’ve gone to the doctor it’s been elevated which is weird because usually it’s low and everyone is always telling me how wonderful it is.That’s for the next post.

So anyway, I got my long-awaited and needed direction from him; I can go back on Enbrel! This morning I took my first injection in over two months. It was funny because this time my mentality was, thank god I get to take it, rather than ugh another injection. It made it much easier. So basically the Rheumy said we’ll give the Enbrel two more months and if it doesn’t help, we will try something else. I’m hoping the Enbrel works. He also said that if I don’t feel any better next week to let him know and he’ll probably put me on a short term course of steroids. In addition, I will continue to be on Nambumetone and hopefully that  coupled with Enbrel will do the trick.

Then he turned to my knees. I had complained about them before and how it hurts to be in the car too long, they hurt when I walk, etc. He re-examined my xrays and poked and prodded the knees for a bit and said that it appears to be osteoarthritis and that my bursae are puffy and swollen (inside of the knees). He said that he could give me cortisonal injections (to which I made a face… more injections?). He smiled and said we would try a topical osteoarthris gel first. You 2g of it on the spots of pain/tenderness 4 times a day. The gel, Voltran gel, as I affectionately call it, is another NSAID (as is Nambumetone). I’m hoping the gel will work.

So that’s about where we are. I go back in a month to follow up and get blood work done again. In addition, if nothing improves by next week, I call and go on steroids. Here’s hoping I feel better next week!

Thought for the Day:

A Month of No Enbrel

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As I mentioned in previous posts about the implications of a tick and the follow-up to that post about having to go off enbrel to take antibiotics, I am still going through the motions of lyme’s and mono. I finished up my antibiotics and was very anxious to get back on enbrel because of my increasingly painful back and si joint flare-ups. Unfortunately, when I called my Rheumy for his approval, I did not get the response I planned on. He told me that because the antibiotics are all gone, I need to now wait a couple more weeks until I restart Enbrel to make sure I don’t have any continued symptoms. Blah. I am not excited about waiting longer.

The nambumetone seems to not help as much as it had been previously- perhaps because I am not combo-ing it with Enbrel. My back pain in the mornings has gotten worse and lasts longer than before. The one thing that I did notice is that when I went to the gym the other day, I arrived in pain. I wasn’t sure if I could work out let alone jog. I decided to push through it anyway because I need to get some jogging in in light of the Feb half marathon in California. I hurt to begin with but as I kept going, I realized that my SI pain got better. It eventually came back a while after the gym, but while I was at the gym, I felt good! Guess I’ll keep exercising!

In light of everything that has happened I’m not sure if I’ll be able to run the entire half marathon in Feb, but I can at least do a run/walk. At first when I came to the realization that running the entire thing was probably not going to happen, I was sad. I felt like I let myself down. But now, I am ok with it and I know that I can work hard to get in a good run/walk and then I’ll be ready to take on the next half marathon and run the whole thing. Besides, I made it to the gym 3 times this week and I biked a total of 30 miles and run-walked about 4. That combined with some long walks outside and I’ll take it.

So, it looks like I’ll be calling the doctor to see what I should be doing in the meantime while I’m waiting to go back on Enbrel… perhaps he can suggest a stronger anti-inflammatory than nambumetone (750mg horse pills). For now, I’m going to go enjoy the beautiful day!

Fa-La-La

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Merry Christmas, everyone! It’s hard to believe that yesterday was Christmas. Where does the time go? I hope you all had a wonderful wonderful holiday and got a chance to spend some time with family. Andrew, Franklin and I were lucky enough to spend 3 whole days and part of two days at my parent’s house in Pennsylvania.  We were overwhelmed by all of the awesome gifts that we received from our two families and having the chance to spend time with my grandmother, mom, dad, and brother (and Andrew and Franklin of course) was just wonderful. Now we’re back in DC, settling in and trying to get ready for work this week (YUCK!). This weekend we’ll be heading off to OCMD to ring in the new year and a whole host of new resolutions… to be shared (perhaps?) at a later date. For now we’ll focus on putting our pasta maker to use!

I wanted to follow up on my last post (wow 1/2 month ago, I’m sorry!) In my last post about the implications of a tick on autoimmune diseases, I mentioned that my regular doctor told me that my lyme’s disease test came back positive. I then went off to visit an infectious disease doctor. The appointment went well- I spoke with both a doctor and an assistance who took my vitals, chatted with me about my history and told me where we were going from there. Basically they wanted to re-run blood work to confirm lyme’s and test for mono, toxy something or other which is caused by eating undercooked meat or soil, and a host of other things. I begrudgingly agreed. What’s another 3 or 4 tubes of blood… so off I went with a chat from the infectious doctor that he’d call me back in a week.

About a week later I received a call from the assistant I had met with- she was really nice and she calmly explained to me that my lyme’s disease test came back positive again as did the mono test. Thus, she said, I’m really sorry- you have lyme’s and mono. Umm what? Where did that come from? At least it explains the tiredness and the neck stiffness and the headaches and what not. They prescribed another 2 weeks of doxycicline (so I have a month prescription now) and told me to take it easy and that the mono would go away on its own.

The upside of this is that I have a diagnosis and I’m on medication. The downside of this is that for the whole time that I am on doxy, I can’t take enbrel… so my back and my SI joints have been acting up A LOT. I’m just hoping that now that it’s been a little over two weeks, my Rheumy will give me the go-ahead to go back on Enbrel so I can get back to feeling 100%. As I’ve mentioned in previous posts, it’s been a rough Fall/Winter of 2011, but we are happy and ready for 2012- we both feel as though there are good things to come!!!!

The Implications of a Tick on an Auto Immune Disease

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If you read my last post, Implications of an Autoimmune Disease, then you are aware of some of the risks that come along with Enbrel; mostly a weakened immune system. In addition, you know that I’ve been dealing with some swollen glands, sore throat, stiff neck, headaches, fatigue, and more recently… despite the Enbrel helping my back, I did not like these other symptoms. So, after a visit to the minute clinic, another visit to a regular doctor to get tested for Mono, the flu, and a whole slew of other illnesses, I finally got my answer.

On Thursday afternoon, I called my doctor to cancel the appointment we had scheduled for Monday because it overlapped with Andrew’s staple removal. The doctor came on the phone and said, “well I’m looking at your bloodwork… everything looks normal except well, you tested positive for Lyme’s disease.” And thus, I had an answer to my symptoms. Albeit, perhaps not that answer I had hoped or wanted (if you can possibly hope for some type of illness), but, at least it was an answer. She said she would send me antibiotics that I should take for two weeks and she would refer me to an infectious disease doctor who I needed to follow up with.

I’m sorry what? The last time we went hiking was 6 MONTHS AGO! Such is life. On Thursday and Friday, I checked my email and mail for either a prescription or medicine; I found neither. I called my doctor’s office to ask if I could just come pick it up and the woman told me that it was the doctor’s day off and she would just call me back on Monday. This kind of upset me because even though Lyme’s is very treatable, 1) I feel like SH*T and 2) you’re supposed to start taking antibiotics the second you find out. Luckily, on Saturday, the medication showed up in the mail . The medication is doxycycline (pictured below). You take it twice a day either 1 hour before eating or 2-3 hours after eating. It causes nausea and headaches and fatigue. Here I pause- wasn’t I supposed to be on this medication to stop the headaches and fatigue? Oh, life! In the meantime, I had to call my Rheumy and explain that I had been diagnosed; he told me to immediately stop taking Enbrel. Which is just fantastic, considering that I just started to feel immensely better on Enbrel.

I called the infectious disease doctor Monday morning and the woman said that the next available appointment was January 23rd. Wait, what? 1.5 months from now? There’s no way I can make it 1.5 months without Enbrel. So, I called my doctor back. She said, yes you can wait until January 23rd and you should keep the appointment because you may need a longer course of antibiotics. I mentioned that I had to stop taking Enbrel until my clearance from the infectious disease doctor. She replied that this infectious disease doctor was the only one in the area and that I should call back and say if there are any cancellations to let me know. Let me pause here– does it make any sense to go on antibiotics for two weeks, only to go off them for a month, only to possibly find out at the end of January that I should be on a longer course of antibiotics? But, i digress.

Andrew then did a search of infectious disease doctors in the area and found one up near my Rheumy. I immediately called and they were super friendly and got my an appointment.. wait for it… TOMORROW MORNING! Amazing! So, I am off tomorrow morning to figure out the next course of action. Needless to say it has been a whirlwind tour of diseases and illnesses! By now I am sure that Andrew is sick of my complaining, but, he is being a great sport and I continue to appreciate his support as I have my mini emotional breakdowns!

I will see that although the past few months have been trying, finding out that Andrew’s tumor was benign, seeing the drain and now the staples/stitches removed makes me sooooo completely happy! On top of that, I just found out that I got an A in one of my courses and an A+ (the first he’s given to a student at JHU) in my other course. So really, it’s hard to say that this past week has been anything but AMAZING.

The Patient Has Returned

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First off, a huge thank you to everyone who has sent notes and emails, texts and ims and has called about Andrew. So sweet of all of you! Andrew and I drove into GW hospital early on Tuesday morning. We had to be there at 6AM for pre-op. We got in and signed in and met up with his parents. Andrew was immediately called upstairs for some pre-op work but we did get to see him before he went into surgery. He went in about 7AM. The surgeon told us to expect to hear from him around 10. My parents drove down as well so we all got to the nerve-racking waiting game. Around 9 or so, the surgeon came down to talk to us.

The surgery went extremely well- the mass that was to be removed was located in the external layer of the muscle wall (external oblique). That being said, it was not impacted to far so they didn’t have to cut too far into the chest wall. Along with the mass they removed some marginal area to ensure everything was removed. The mass ended up being a spindle cell tumor- low grade malignant. The tumor and the marginal area combined were about the size of a grapefruit. The muscles were then stretched and connected with a series of stitches that had fiber sugars attached to them. These sugars will dissolve and help bind the muscles back together. They left a drain in the wound to drain “muscle binding fluid.” The surgeon seemed extremely happy with how well the surgery went. Andrew had to spend the night in the ICU just to be watched– and on a constant morphine drip.

We spent the day with him. He was super fuzzy and in and out of it (as morphine does to you). On Wednesday, we went back in as soon as visitor hours began and the on duty nurses informed us that he had a great evening and could probably go home today. He was pretty nauseous but had been off of morphine for two hours by the time we had gotten there. As he went through the day, his condition slowly improved and we were able to get him discharged!!! He was discharged with a drain in his incision which drains the fluids surrounding the muscle-binding. In the past day, he has improved leaps and bounds. He is eating crackers, some ramen, and half a bagel. He has been up walking a bit and has been lucid since yesterday (today is Thursday).

So all in all, surgery went extremely well and even though it was a tumor and it was low grade malignant, this should be the course of action. We will see once the full biopsy is complete. All we know now about the tumor is that it is a spindle cell tumor which basically means it is either caused by fat tissue, nerve tissue, or muscle tissue; the biopsy will tell us which and we’ll go from there.

So, thank you again, everyone for your well wishes and concerns! I appreciate them!!!!

 

As for me, I’ve got a follow up appointment next week to see how the past month or so of injections has gone!

Work and Grad School

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The picture at right is my view for the next two days straight… and probably many more, too. I’m getting into crunch time. I have less than a month left in my first semester of Grad School at Johns Hopkins! I am excited, stressed out, and exhausted all at once. I absolutely love my courses (Water Resources Planning and Smart Growth/Urban Revitalization), but whoever even thought about working full-time and going to grad school part-time should be smacked. It’s impossible. My days are constantly consumed by working all day and feeling guilty about leaving work on time and then working at night and feeling guilty about stopping to go to bed or eat dinner or heaven forbid, do nothing. Any free time that I find I constantly feel guilty and like I am wasting that time that could otherwise be put to good use.

This begs the question… did I make the wrong decision to go back to school right now? No. I am glad that I did. As I mentioned before, I love my classes; they are interesting and I’m learning a lot. Do I think that writing 3 papers a week for one class is a little excessive, yes, I do. But, that’s life. The crunch time now is spent attempting to write and edit my term papers. They aren’t really long, but they require even more work because there is a page limit. I often think to myself, one more month and I’m done. I’m free. Then it kicks in. Calculus II. I still have to finish Calculus II.

Before I started this blog, I signed up for Calculus II as a requirement for my grad school program. I have to finish it before the Spring semester begins. I worked on it here and there when I first started it out– I made progress. slowly. Now I am at a point where I am wondering how I am going to finish it. It is a mastery course that consists of about 128 assignments (including 4 exams). As a mastery course, you have to continuously revise your homework until you get 100% on it. The idea is that you walk away really understanding the program. Great in theory, but I am on about assignment #25 and I have a few corrections to make to a handful of previous assignments. My fear is that if I wait until my classes end to re-focus on Calc, I will NEVER have enough time to finish everything including a final proctored exam in time for Spring classes.

Of course in the midst of this funness of work and school I am stuck wondering if medicines will work on my AS and if my pain will decrease and my exhaustion will be squelched (hehe I like that word). In the past two weeks I’ve had an increasingly hard time using my fingers and wrists- they seem to get extremely sore and tight… to the point where I was spraying a spray bottle of cleaner and had to stop because it hurt so much and I felt like I didn’t have the strength. It sucked. It makes me wonder if this will be a re-occurring issue that I will be facing and if so, I will need to figure out a way to handle it; much of my job and certainly the majority of my schooling revolves around typing so that is a must. Guess we’ll see what the Rheumy says at my follow-up appointment next week!

I supposed I will close with this; this is a HUGE shout out to anyone who is working and going to grad school at the same time- I feel your pain.

~Stress is waking up screaming only to realize that you haven’t been sleeping~