The Huge Improvement

Today was leaps and bounds better than the past few days. First and foremost, I woke up without a headache for the first time in almost a week. Second, I was able to get up and walk around the apartment. I had spent the last four days almost completely bedridden. Today I woke up, took a shower, ate breakfast at the table with my sister and her roommate, and then helped them get ready and make plans for the day. It was so nice spending time with them!  I finished packing some miscellaneous stuff for the cottage and then my husband and I started the trip upstate. Luckily, I survived the four hour car ride without a hitch!  I never would have made it if we had stuck to the original plan and gone up last night. It was definitely worth waiting.

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The cottage is relaxing, as always. It doesn’t hurt that we have WiFi here now, too. As I write this I’m sitting by the fire, listening to a live band across the lake, and other lake goers are setting off some fireworks. It’s so nice to be around other people and to be able to relax. It’s nice not having to worry about the noise of the music or sparklers giving me a headache or the bright light of the fire bothering my eyes.  Hell, it’s nice even just sitting up in a chair without feeling shaky. I’ll leave you with a picture of my current view.

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The Surprise Visitors

My little sister and her roommate were supposed to fly to Denver, CO last night for vacation, but due to flash flooding, all flights from Chicago to Denver were grounded and the airline couldn’t get them on a flight until Saturday night. Since they already had the days off of work and their bags were packed, they decided to take a spontaneous trip to NYC to stay at our apartment while we’re at the cottage. I’m excited that my sister got to see my apartment, but I’m even more excited that we overlap for about a day and a half, meaning that I got to see my sister today!  It doesn’t make up for the Chicago trip I had to miss last weekend, but it’s still ten times better than not seeing her at all!  I knew I missed her, but I forgot how much until I got to hug her.

In terms of my side effects, today was certainly better than the past few days. I still didn’t leave bed much and my appetite this morning and early afternoon was practically non-existent, but by dinner I was able to eat a real meal and sit up in bed for a little bit. For some reason, even though it makes me extremely overheated, laying on my husband’s shoulder makes my headache better. It might just be psychological, but I’ll take it!  Also, the makeshift blackout curtains that my husband hung make a huge difference.  My eyes have been super sensitive to the light.

The one thing that hasn’t improved at all is showering. Last night’s shower was rough. I think I was finally able to pinpoint the exact cause of the shortness of breath, though. The problem is the steam. Since our new apartment’s master bathroom has a small, square, glassed-in standing shower, the steam accumulates fairly quickly. Don’t get me wrong, I love having a glass shower, but I wish it was a little bigger so the steam had somewhere to go. The only way to obtain any relief was to periodically open the shower door to let some steam out and some cold air in. Basically anytime I wasn’t under the water (ex. soaping up or shampooing my hair) I had to leave the glass door open. Again, not ideal, but at least it was a workaround. Hopefully this won’t be a problem forever.

The only other update is that my foot cramps are back. That is definitely due to the Prednisone, though, so hopefully it won’t be a problem within a few weeks. I’ll just have to deal with it until then.

I’m finally all packed for the cottage and we’re hoping to leave tomorrow afternoon. Fingers crossed!  Last time we headed to the cottage was Memorial Day Weekend and that didn’t end well, so here’s to hoping we finally get the relaxing week away that we want/need. My husband has been such a trooper taking care of me and waiting on me for over a month at this point – he deserves the chance to relax!  Hopefully my Percocet/Oxycodone will keep the headache at bay long enough for me to relax this week, as well!  Or at least long enough for me to survive the four hour drive upstate!

The Useless Day

So much for working from home… Today was a nightmare. The side effects of the IVIG and Prednisone were non-stop torture. I can’t even think of a time today where I was able to sit up for more than five minutes. Also, my foot cramps returned and I had a total loss of appetite. I had to force myself to eat which, in turn, only angered my belly. Around lunchtime I called my husband crying and begged him to come home from work because I didn’t feel good and I was scared to be alone. Luckily, his boss is very understanding and let him work the afternoon from home.

I don’t know what I would have done this last month if I didn’t have my husband. He has been my saving grace. Today, for instance, he came home and made sure I ate lunch, grabbed me an ice pack for my headache, stroked my hair, and repeatedly kissed my forehead. The forehead kisses this last month have been numerous and much-appreciated. Nothing makes me feel more loved than a forehead kiss.

In general, today’s main issue was the headache. I suppose a better word would be migraine. My husband hung the black-out curtains in the bedroom so I didn’t have to deal with the light making my migraine worse. He also unscrewed a few of the lightbulbs in the bathroom so it wasn’t overwhelmingly bright every time I went in there. Even so, the pain was pounding on the right side of my head and it was pounding ALL day. I sincerely hope tomorrow is better. Laying in bed all day gets old after a while. I have work to do and I have to pack for the cottage.

I read an article online about IVIG that said the side effects only last up to three days after treatment is finished. I hope that’s right because it would mean the side effects should be gone by end of day tomorrow!  I guess that is when I’ll find out how much of this is IVIG-related and how much is due to the Prednisone taper. Fingers crossed that tomorrow is a better day!