Losing Something… Someone You Can’t Replace

Standard

Today, I take a step back from the past 9 months of AS struggles, successes, and frustrations to reflect on losing something… someone you can’t replace.

A week and half ago I was met with the end of an era. My grandmother, 90 years old, and the strongest most amazing woman I have ever known left this world for another. Today I write in remembrance of her- all that she was and everything she stood for. I reflect on how a few days ago, my mom called me into the closet of my grandmother’s apartment to show me a piece of paper with the phonetic spelling of Ankylosing Spondylitis handwritten in my grandmother’s writing. She always cared so much and worried so much about all of us. She was the epitome of love and caring. And today, I share with you my speech from the funeral, in the hopes that if you didn’t know her, you will understand, maybe even a fraction, of how awesome she was.

My brother, myself, my cousins- we are so extremely lucky. We were able to spend a good quarter of our lives with Grandy and Grandmother. When we were younger, we were involved in quite a few activities. Through every event, every concert, every game, every musical, and every play, no matter what, grandmother would be there, alongside grandy. 5:00AM Harvest Breakfast at the HS? No problem. They’d be there at quarter of…. Graduation ceremony in blistering heat? Don’t mention it. There with smiles and bursting with pride. Basketball game with coaches screaming and parents demanding more playing time for their kids? They were there in their element- cheering and yelling, wearing their green and white to support the team. Before every home game I’d be going over plays in my head, and my teammates would say, hey, I just saw grandy and grandmother- they’re sitting in the usual spot! That’s just what they did. My grandmother wasn’t just my grandmother it seemed, she was everyone’s grandmother.

A mere week before she passed away, all of the grand kids were able to spend some time chatting with her. When it was my turn, I walked over and the look on her face was just priceless. There she was, not able to jump up and walk around, but that look. that expression said it all. It summarized every single time I had seen her for the past 28 years. A huge absolutely huge, ear to ear grin. That look of “I was looking for someone to make my day, and here you are.” That feeling as though you were the only person in the world that mattered. She always had the look.

After exclaiming how happy she was that she was able to see all of her grandkids that weekend and asking how my weekend was, she looked at me and said “Meghan, I want you to know that I am completely at peace. I am comfortable, I am happy. and I am ready to see Grandy.” We spent the next two hours talking about life; work, the new house we moved into, traveling, adventures. She told Andrew and I about the days of traveling around the world with Grandy. And still, at 90 years old, she recounted the most intricate details of their travels. The appearance of the “water guard”  outside their door in Thailand. The grandeur of the Taj Mahal. The people they met, the places they visited, and the things they did. My grandmother had the most amazing memory, a trait which I believe my brother has inherited. She was like a walking diary and the stories that she had to share you could just listen to for hours. She experienced so much throughout her life and genuinely loved every second of it.

I could literally stand up here for hours and share with you story after story about the memories of my grandmother like the time and meticulousness that she spent decorating eggs at Easter or the year she made me pie crust for my birthday (just the crust, simply because I loved it). There are stories about the drawers in an old cabinet that she would stuff with little toys for the grandkids to play with while the parents were talking and there are stories about the jars of gumdrops she kept on a shelf that was just too far out of reach- and yet, her step stool always seemed to be stored underneath that cabinet– personally, i think she did on purpose so we grandkids could reach them. These stories will no doubt be shared with not only her great gandchildren but every generation from here on out.

The day my grandmother left this life was a gorgeous day. It was chilly, but the sun was shining and there was hardly a cloud in the sky. It was what some might call, a perfect day. It matched my grandmother to a t- she was always perfect. Perfect in everything she did, everything she said, all the love she showed. She loved with such passion, she listened with such care, and she always gave everything she had. Although we don’t know her exact thoughts as she drew her last breaths, I’d imagine they were something like– I had a wonderful life, I did everything I came to do, my grandchildren are happy, I’ve seen them all grow up into beautiful adults, my daughter Beth is everything and more than what I’d hoped she become. Her final thought was probably, George, I’m coming home.

Despite feeling as though my Grandmother was a gift that was taken away from me, in all actuality, I realized that my grandmother was a gift that was given to me. And when I think about it that way, I find comfort.

I love you more than anything grandmother. You were a beautiful woman, a loving wife, mother, and grandmother, and a true inspiration. Thank you for everything.

The most loving couple you could ever meet

Seizures and Blood

Standard

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.

I’m an AS Kicker. Seriously.

Standard

Hello there. Life is good today. It’s Friday.

Wow, so much has been going on! I am happy to say that my stress is at an all time low currently. While this will most likely change in the near future, I’ll take it when I can get it. I have now been back on Enbrel for 5 weeks and I have finished my second  short-course of Prednisone. So much to update you on… let’s see…

1. This past weekend, Andrew and I ran the Rock and Roll Half Marathon. It was Andrew’s first. It was awesome. It was in Pasadena, California and we had an amazing time with amazing weather. Just perfect! I have definitely decided that running reduces my stress levels immensely. I plan to continue doing it. It also helps that running temporarily reduces my AS symptoms.

2. We finally got our new kitchen set-up. This makes me happy because we can cook and we have been and it’s been delicious and awesome! Next step- the rest of the house!

3. Voltaren Gel– it seems to actually work. My knees are still not 100% but the gel does seem to be helping my knee pain a lot. I will continue using it for sure… plus! No cortisone injections!

4. Enbrel– while my pain is not gone, my fatigue has vastly improved over the past 5 weeks. For instance, it is now 2:30 in the afternoon and I am still awake… and all I had was a large green tea today (in the caffeine department). 5 weeks ago at this time I would have had 2 caffeinated sodas, 3 cups of coffee, and a cup of iced tea and I’d still be falling asleep. I am thanking Enbrel for these things.

5. Prednisone– it did seem to help with the pain and kind of jump start the Enbrel working. As you may remember, I was having terrrrrrrrible heart burn. As a result, I went on a 14 day course of Prilosec which I have just about finished up. It has worked wonderfully and my heart burn has died way down. thanks, Prilosec!

6. We signed up for our CSA again! I am super excited— I love going out to the farm and getting fresh produce and cutting fresh herbs. I see lots of food blogging in my future!

7. Finally, we found someone to take over the lease on our apartment— so no more double rent paying!!!! Such a good feeling! This took a TON of stress off of both Andrew and I.

Yes, life is good right now. Calculus is still there and still needs tending. Hopefully after we unpack this weekend I can buckle down and get it done. It’s about time!

Stress. Stress. Stress.

Standard

Source

We all know it, just when we need to be in a completely zen-like state, all hell breaks loose and 50 million things need to be done at once. You start to get those super tight muscles in the back of your neck- you start to breath heavier, you start to worry. It will never get done. There is no way.

As I mentioned in a previous post, I have had a lot going on and needed a way out. I was 10 feet under and digging with no sign of light or air. So, after some lengthy discussions with numerous folks and with the support of Andrew, I have gotten myself into a much more agreeable situation.

  1. We hired movers. We no longer needed to put our not so springy bodies through the ringer to try and get all this stuff moved from our apartment to our house.
  2. Calculus. In light of the AS flare-ups and the fact that my Calc prof fell behind grading my assignments, he granted me an extension to May 2, 2012. Awesome.
  3. Classes. After a lot of thought and albeit, a bit of defeat, I decided not to take courses this semester. I have 5 years to finish my Masters anyway, so why cram it all in at a time when I feel physically torn apart and mentally demolished? This will give me time to finish Calculus, move, and get the right combo of drugs!

We still need to unpack everything and we still need to find a subletter, but we are going in the right direction and all in all I am feeling pretty good. Stress is there but not overwhelming. Running helps a lot with it. Now if I could only get my blood pressure down and my heartburn gone!

Prednisone and Heartburn

Standard

As you may remember, after my last appointment, I was excited to go back to using Enbrel and I was “awarded” Voltran Gel for my knees. I still need to do a recap on how the Voltran Gel is working out and I know it’s been a bit since my last my post, but we’ve been super busy. We just moved into our first house! Very exciting- what was more exciting is that we hired movers which was just awesome. It was so nice to not have to move big bulky furniture, especially in light of the serious pain that I’ve been in lately. As I also mentioned in my previous post, my doctor said that if things weren’t significantly better this past week he was going to put me back on a short course of Prednisone.

He called to check in and then told me he was calling in a prescription. Cool- I haven’t had any bad experiences with prednisone yet and it seemed to work really well, so let’s do it! Well, let me tell you, I’m through two days now and m.i.s.e.r.a.b.l.e. The heartburn is unbearable! Yesterday especially it came and went almost every 5 minutes– just a really sharp pain and so much discomfort. I was really upset about it and thought it may prevent me from running my 5K today (it didn’t!). Anyway, after a nice conversation and a recommendation from my mom (Thanks, mom!) I picked up some Prilosec and the drugstore. It’s a 14-day course of taking one pill a day. I will say I am feeling less heartburn today and since it’s the third day of Prednisone, I’m taking fewer pills, so hopefully everything will work out just fine! Crisis averted!

In other news, Andrew and I ran the Love the Run You’re With 5K this morning! It felt like such an accomplishment to cross that finish line holding hands with the love of my life! What’s even more exciting is that we had been doing training runs at about 15:00min/miles which we knew we could go faster than but didn’t want to push because we’re trying to train for a half marathon, but we busted our behinds and ended up with a sub-12 minute/mile pace. 37:05! Next stop: Rock and Roll Half Marathon in Pasadena!!!

Voltran Gel for Osteoarthritis

Standard

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:

Too Tired to Think

Standard

I. am. utterly. worn. out. I don’t know what’s gotten into me this past week or so, but I am exhausted. Absolutely exhausted. I drink coffee in the morning and then a glass or two of iced green tea, so it’s not as if I’m not getting any caffeine! And yet, I am still completely run-down. I mean, there has been a lot of excitement going on around here. We just signed a lease for our first house! I had a personal record run of 6.02 miles! I found out one of my best friends is preggers! But I’ve also been getting decent amounts of sleep. So who knows. I am still sticking with the point that I feel great while working out but awful when I’m not. But I can’t work out all day, not with a full time job and not with the life that we’ll be living over the next month or so between traveling and packing and moving and working!

Wednesday at 4:15PM I have a follow up appointment with my Rheumy. I am hoping and hoping and hoping that he tells me it’s ok to go back on Enbrel. The Nambumetone just doesn’t seem to cut it and I’ve been really sore these past few weeks.

For the first time though, I am scared that I may not be able to do it all.

Classes started today. The national workgroups that I’m leading at work start this week. Calculus still has to be completed. We need to pack up the apartment. We need to find a subletter. We need to move. I don’t know if I can do it all. I’m scared that I won’t finish Calc and I’ll get kicked out of Grad School. I’m scared that I’ll fall flat on my face while leading a workgroup. I’m scared that I’ll fall behind in class because I’ll be too tired to do the readings and take part in the discussions. I’m worried we won’t find a subletter. I’m worried we won’t have anyone to help us move. I’m stressed out and I feel like crap.

Somehow things will work out…