Saturday, June 29, 2013

Be Back to Writing Soon

I literally haven't posted in forever because I'm on a self/husband imposed ban from anything other than shutterfly, while trying to create my wedding photo album. 

But stay tuned.... I have stories about defending my illness, changing my medications, PT, injections, resizing rings, and an insane electroshock implant. 

Be back to writing soon! Miss you. 

Thursday, June 20, 2013

School's Out For Summer

I posted a status on Facebook about how Kevin, on his first day of summer vacation, brought me breakfast in bed. He always promises that this type of doting behavior (along with flowers every week or two) isn't because we are newlyweds and will continue throughout our lives. Here's hoping, because I feel so lucky to be spoiled and pampered. Let me tell you, it's not bad being treated like a queen.

After that lounging start, we went to work. It was a very physical day for me -- much more than I normally would ever pack into one day. Call it end of spring cleaning. 

Tuesday night we bought a new-to-us bookshelf off Craiglist, from a guy in Fairfax. We already have two bookshelves that are about 8 and 9 feet respectively and one in the 4 foot range. We turned a skinny 4-footer into a DVD shelf. The remaining three were not even close to enough room for the book collection of a couple who met working for their college newspaper. We are book nerds, plain and simple. And we can't even merge our collections because we have different ways of organizing our books. Kevin does what probably every normal person does (or would do if they read) and alphabetizes by author. I would, except I can't. I'm serious, with my "memory" or lack thereof I can't! I'd never find anything because I don't know who wrote it, unless it's Stephen King. So I clump my books in sections based on topics (a much broader thing to remember than a person's name!). I have sections on poetry, sports, animals (subsections: dog fiction, pit bulls, and sharks), philosophy, vampires, Stephen King, Harry Potter, Chicken Soup for the ______ Soul, mafia, religion/spirituality (subsections: new age, Christianity, and Wicca), college books I found interesting enough not to sell back, etc...

While Kevin reorganized our bookshelves and vacuumed the house, I gave our 4 bathrooms a thorough, deep scrub clean (top to bottom, every nook and cranny). Four bathrooms sounds awesome when you're shopping for a home. It is not awesome when you have to clean all of them. Halfway through cleaning the bathrooms, I took a "break" to organize our office with Kevin. Over the last two months we haven't ever put anything away in the office. We've just put office-type stuff into unassigned piles. Afterward, we went on our daily family walk, which is Blaze's long walk of the day. 

When all was done except the half bathrooms, we made ourselves a lovely dinner that happened to also require a lot of work. We had grilled kabobs: chicken, grape tomatoes, and both green and red peppers with a side of corn on the cob. Kevin cut the chicken; I mixed together a marinade for the chicken: a blend of teriyaki sauce, EVOO, egg, poultry seasoning, and lemon pepper. Kevin chopped veggies and shucked corn; I cleaned the main level half-bath. We skewered together.

We ceremoniously started our brand new grill (thanks to my in-laws!) together. Our grill is charcoal, because I'm old school and had no interest in a new, schmancy propane operated machine. Kevin's used to boiling corn and a more modern style of grilling, so when it came time to cook, I (wo)manned the grill. And while the coals were burning I cleaned the basement bathroom. 

We sat down to dinner at our brand new patio furniture (courtesy of Kevin spoiling me with stuff for the house). Dinner was fantastic. We considered our first new-grill meal a huge success, and we're very happy that grilling burgers is on our menu for next week. For his part, Blaze probably ate an entire pepper's worth of veggies, because we made way too much.  

In other backyard news, I've grown lush new grass (which is ironic because I have killed my one houseplant). We had a patch that was overrun with rocks and weeds, except for a few poorly maintained rose bushes. About 2-3 weeks ago, I poisoned and ripped out the weeds and raked the area until I got fresh dirt and sprayed out grass seed. With all the rain we've been getting it has flourished. Mommy made great grass for Blaze!

In healing news..... No, I'm still not getting any better, but my henna-like tattoo is all healed up. And quite pretty, if I may brag about my ink ;)

One more piece of healing! My scar, from the March surgery. My physical therapists always comment on how well it has healed. Nothing else is healing, so at least there is that!

PT in one hour! And pain doc, maybe resuming injections, tomorrow! Updates likely to follow....

Friday, June 14, 2013

Physical Therapy, Part 2

After my first PT session, I had a really bad night... As you know. So when I went to PT yesterday I told them about it. I said, "I know my one job while in here is to tell you if ANYTHING hurts, and nothing hurt during last session, but it was very bad after." We had a lengthy talk about it, and how some days I do have a bad day or night, just because. Or maybe the storms agitated it.

My therapist (well, student-therapist) had been planning on doing something slightly different this session, but decided we should do the exact same stuff and see if that caused a bad night again. If it did, we'd know that they needed to find a way to be even gentler, and they're already only doing Grade 1 stuff on me anyways. She said the one thing is if it causes a bad night, but then I feel some relief the next day, that's okay. "Sometimes neuro-mobes cause a slight flare-up, but then it feels better after."

Yeah, no relief today. But another bad night last night. I was up until nearly 3 am. At least this time I had enough sense not to try to tackle the stairs alone. I stayed in bed with my boys, until exhaustion took over and made me pass out. I guess next week in PT we're going to have to dial it back somehow. :(

Oh, and yes I still have all the sinusy/cold-like symptoms. But I'm still trying to avoid my 4th antibiotic in the last 6 weeks. I have to protect whatever miniscule immune system I have.

Tuesday, June 11, 2013

Because My Health Hasn't Impacted Enough Already

I've been waiting to write this blog for a week or two now. It isn't my story to tell, so I waited but Kevin told me he doesn't mind if I share it. It's his story. I appreciate his allowing me to share it so much, because I'm both hurt and furious over this. It has been burning a hole inside of me, and this blog has become an outlet for me so in glad to finally get this out. 

First I have to give you all a little background on my husband. Kevin, like me, was an elite high school athlete in a specialized position (baseball pitcher to my soccer goalkeeper). He is also in a rather elite category of intelligence/education. He has a master's degree, and in all of his courses in college --both undergrad and graduate studies-- he only received two B's, all the rest A's. He has chosen to take his higher education and brilliant mind and work in the public school system as a special education teacher. So his heart speaks for itself. He also has given his free time to coaching. At the start of his teaching career he was a softball coach. This year, at a new school, they asked him to help with the baseball team, as the pitching coach. 

Now, I know a little about high school coaching. I was the varsity head coach, thereby running that program. I was also fortunate to be the assistant coach and co-coach with many other experienced coaches, for two more sports. When I coached high school, my stipend paid as if I worked 10 hours a week. Never once was that true; I always put in closer to double that. Kevin also put in significantly more time than what constitutes the official season. The baseball team spent all winter doing pre-season conditioning. This is not part of the season. This is not paid time. But Kevin was at almost every single conditioning practice, unless I truly needed him. During the season, he would research pitching drills at home. He would practice the form of a throw or a drill wherever we were, reminding me of my best friend dancing ballet through stores when we were children. 

Once the season began, the team had a practice or game 6 days a week. Kevin early on told his AD, head coach, and fellow assistant coach about my health problems and that occasionally there may be times that he'd miss a practice to be with me at a doctor's appointment. He also told them he wouldn't be available for many Saturday morning practices, because I'm alone all week and I'm disabled and he needed to be with me. He ended up missing a couple of games when I had surgery, and that was it. Early after my operation, we were both back to his games. This was never once a problem brought up with this during the season. 

It was never a problem until Kevin's end of season meeting with the head coach. On the day of the meeting, before it took place, one of the players saw Kevin at school and asked him if it was true he wouldn't be coming back to coach. Kevin was shocked to hear this and didn't know what to say to it. Sure enough when he sat down with the head coach he was not asked back for next season. 

The reason given? My health problems. Kevin was not committed enough to the team, because of me and my health problems. The head coach (HC) told Kevin repeatedly that it was understandable and of course Kevin should put his family first, but he wanted coaches who were more devoted to the team and had less distractions. 

I went to as many games as possible, and I saw firsthand how great Kevin is with the players. They respect him and trust him. They like him. I know from coaching, if players trust and respect you, they will fight battle for you on the field and run themselves into the ground. If you don't earn their respect, even the most talented players will throw away their skills. Kevin helped the guys immensely. They listened and learned from him. They also grew to like me and counted on me being there regularly. Like my own high school teams, we trusted them to be mature young adults and didn't hide my problems from them. They were understanding of Kevin's rare absence to take care of me. They were a good group of guys, both players and people. I had a blast attending their games, feeling like they were my surrogate team since I had lost coaching my own track team mid-season. 

Kevin told me it was immediately obvious to him that my health wasn't the real reason and I shouldn't blame myself, but I did. I felt guilt that he was losing something special, because of his devotion to me. I was hurt that a person could desensitize that way and talk about my health problems so coldly. And I was livid over both his loss and the callous approach to my problems. Kevin rationalized that high school programs are always desperate for coaches. If his commitment was the issue, it would make sense to bring in another assistant, but to ask Kevin to give whatever time he could. Not to tell him he wasn't welcome back. And that made sense to me. I had two assistants on my soccer team, neither of whom could give full-time attendance. But they were great with the kids and great with the sport, so I considered myself lucky to have them whenever I could. 

The baseball HC made one off-the-cuff comment that Kevin honed in on and realized was the root of the issue. HC told Kevin "we're not there to make friends.." Kevin realized the real problem was that the players didn't like or respect the HC, but they liked and respected both assistants. Instead of bettering himself, the HC decided to let go of the better men. 

The following week Kevin learned the AD didn't even know the HC was shuffling the coaching staff around. The AD also wasn't happy to learn the players all knew before the assistant coaches did. 

Allegedly the players plan to bombard the AD and the principal with complaints, because they don't want to play next year. Kevin and the other assistant told the players it was nice that the players felt that way, but don't do it just because they like the assistants--do it only if they believe having these guys, and/or not that HC, is best for the team. I'm certain the players KNOW that, but I'm not sure if anything will change. Several players, really talented players, have threatened not to play next year, but who knows what a year will bring. 

What I know is I made a list months ago about the things I've lost due to my health. My husband should not be able to make his own list regarding his work. I know he's right that this man, the HC, coldly used me as an excuse and it isn't the real problem, but that doesn't make it sting any less. 

Days of Rest, Physical Therapy, Sinus-y, and Stairs

The last few days I've been developing a sore throat which keeps getting worse and worse. It has grown to include ear pain, sinus pressure, mucusy congestion, sneezing, and all sorts of other fun symptoms. I regularly take allergy medicine, both a preventative in the morning and Benadryl at night. I'm also fairly certain the monsoon rains have temporarily wiped out all allergens. I'm also on an antibiotic (for other stuff) so I'd like to think I didn't manage to get a sinus infection while on that. Unfortunately a sinus infection is exactly what this feels like. But who gets those in June? Ehh, people with no immune systems I guess. Still, I'm trying to see if this yuck will run it's course, because 3 antibiotics in one month seems like plenty to me. A fourth seems like death to the traces of whatever immune system I have left. So I'm taking my nasal spray and drinking my homemade tea, a blend of eucalyptus and mint. 

Eucalyptus is a decongestant and an expectorant, with natural antibiotic properties. Mint can also relieve congestion in the respiratory tract, so it's useful in treating bronchitis, sore throat, or a cough. It also can be used to reduce a fever. Mint is a soothing herb and can be used to treat headache, backache, and neck pain. So this is my super tea. 

I love that the steam is visible in this picture. Piping hot. 

In other fun news, I fell down the stairs last night. Sometime after 2 am. I wish I could tell you that's uncommon, but it's not. That's why I almost always use Kevin's help to go up and down stairs. And if I'm being "independent" I scoot down on my butt. Or go very slowly, with a death grip on the railing. 

But last night, in the middle of the night, nearing the witching hour, unable to sleep, in pain, for a foggy moment I thought I was a normal person and approached the stairs as such. Luckily for me and tragically for him, Kevin is a light sleeper. He woke when he felt me get out of bed. I can only assume he figured I was going to the bathroom and didn't think twice about it. Until he heard some thuds and crashing sounds. Then he came running --yes, because he's a normal person he can RUN down stairs and be okay-- to my aid. He tended to me, asking what hurt and hugging me. I cried, half out of pain and half out of frustration. 

After making sure I was okay, Kevin asked me what I needed so badly from downstairs. I told him an ice pack. I've been in extra pain since Thursday, because of starting Physical Therapy, and my session earlier in the day was responsible for keeping me up at night. So he got me an ice pack and took me upstairs. 

As is typical for us, I profusely apologized and thanked him, feeling terrible he has to deal with such events regularly. And he told me I had nothing to apologize for, he loves me and it's not my fault. 

This is a concept I'm still working on learning. I'm in the process of embracing this lesson. 

As I'm writing this blog, my little monster is staring me down and whining and whimpering. We JUST went outside so he could go potty, and he got a treat when we came in, so I'm not sure what he wants, other than for me to stare back. 

Anyways, back on track... Physical Therapy. I started Thursday and it was hellish. Day 1 of PT is always an evaluation to document where your body is when you begin treatment: range of motion, pain scale, severity of symptoms. So they did all the painful stuff my doctors do, and then some more. They warned me I'd have a rough few days following, and they were right. It certainly caused a flare up. 

The good thing was they can feel just how bad I am. It's not me saying I'm in this much pain, they can literally feel it when they touch my body and move my neck and/or arm. I can't begin to explain how validating that is. There are definitely days when people with a chronic illness (or maybe it's just me) feel like they must be crazy, like it must be in our heads. But then you see a doctor who diagnoses and evaluates based on touch rather than listening to your description or looking at X-rays and your nightmare is confirmed to be real, and really that severe.

They really can and did confirm I have TOS, still, just as bad as I did pre-op, and if anything I have more symptoms from removing the muscle. Not TOS symptoms, but pain in my neck. Apparently the middle scalene (the muscle I had removed) is partially responsible for the movements of the cervical spine. Meaning, for the last 2 months my spine hasn't been moving the way it used to, thus causing extra pain. 

Because I am so "pain dominant" and have this particular diagnosis, the protocol they follow with me will be remarkably slow and subtle. They said this isn't a condition they tackle with a "no pain, no gain" approach. Most of my session involves laying there and having specific nerves gently manipulated by the therapist. They've instructed me to tell them if it hurts, even ever so slightly. Everything (except that initial eval) should cause me no pain or feel slightly better. 

Yesterday's maneuvers didn't hurt while I was there, but apparently they did aggitate me. Remember, I fell down the stairs trying to get an ice pack for the pain. I can't even begin to describe how...nothing these maneuvers are. I mean, one is literally wiggling my pinky finger. Yet the therapist tells me they can feel my body resist and tense up, if they move a smidge past the gentlest pressure and angle. It makes me feel slightly pathetic, but like I said, it's also incredibly validating to know the hell I've been going through is 100% real and I'm not crazy. They also can feel that my top rib on the left side is at least a thumb widths higher than on the right side. So that's definitely part of the problem. They are optimistic that they can help and said just because it's that bad doesn't mean I definitely need it removed. 

My therapist is very knowledgeable in both TOS and CFIDS, so I feel like I'm in capable hands. It'll be slow work, but if anybody can help me to avoid having my rib removed, I believe it's the people at this practice (Fusion Physical Therapy). Because the top left rib is so high, if they can help, I'll have a life of maintenance ahead of me -- it won't be a few months of PT and then I'm cured. But hopefully I'll get to a point where I can function on that maintenance program. 

Partly because of PT, the last few days have been a lot for me. Like I said, I started with my hell-eval on Thursday. On Friday I had a rough doctor's appointment that also exhausted me and drained all the energy from my body. Kevin is going through a lot with the end-of-school-year hustle and bustle, so he had no complaints about just resting Friday afternoon/evening and all day Saturday. We made pancakes for brunch both days, but besides that really laid around doing nothing, just relaxing. We both needed it, but even that wasnt enough for me. 

Sunday was Froehlich Family Day at Nationals Park (for the early game). Once a year, my father-in-law treats everyone to a game together as a family. Tickets, food, and drinks are all on him. He and my MIL have club level season tickets, but for this game we were all together in section 126, just off the first base line in foul territory. My brother-in-law and his wife came and brought our nieces too. It was really great family time, but a very hard day for me. It was sweltering hot, and some of my meds make me hot anyways. Plus being run down from Thursday and Friday. Plus my medicine that makes me sun-sensitive. I spent 2 innings up near the food shops, just to get a break from the sun, but I did manage to last the whole game. 

That's it for my updates. But before I end, I want to tell you why Blaze was staring and whining earlier. He didn't stop, so I finally went over to him because sometimes if you do that he'll lead you to what he wants. So he took me to the stairs to go to the basement to get our back, paused, then took me to the front door, indicating he wanted a walk. I told him we had to wait for his daddy to get home from work, for our afternoon family walk, but that we could go out back again. I figured I must've unknowingly rushed him and he needed to poo. So I took him out back --again-- and sat on the HVAC fan to stay out of his way. He sniffed and explored and seemed quite leisurely. Not needing to poop. He settled himself down on the slab out back and laid down to sunbathe. He had always loved laying out in the sun, and it's a gorgeous day. I tried to go inside and sit just inside the door, since I'm sun sensitive, but he followed me inside. So we compromised. I opened the living room curtains and window and put some pillows under him so he could lounge on the top of the couch, as he has always liked to do. He thinks he's a cat. The compromise sufficed. He was happy to get sunshine and fresh air, and I was happy for peace and quiet. 

Wednesday, June 5, 2013

Brief Updates From the Past Week

Hi. I haven't written because we've been busy, which also means I've been exhausted. Friday and Saturday we did lots of miserable yardwork to prepare for the arrival of the monster. 

Sunday was a busy day trip. We went to Salisbury and explored our old university. A lot has changed, but we have a lot of memories that feel like yesterday. 
Kevin suggested we park at one end of campus and walk. I reminded him of this chronic illness cat saying, we had a good laugh, and parked in a slightly more central lot. 

Our goal on campus was to find the Sammy statue; clearly we were successful. 
My arm wouldn't let me climb Sammy. I was pretty envious. LMAO at how the tried to make a Sea Gull look hard. 

Then we headed over to the real reason we were in town. 
I got a new tattoo covering my left forearm. It's a light brown that's supposed to look kind of like henna when it's done. I have the words "Pura Vida" on the wrist already, so this accompanies that. Of all the tattoo shops I've been to, this is the only artist who will do this style. It's because, as he says, tattoo artists are used to big drastic change, not subtle browns.

Then we stopped by HoCo to take the poodle. I haven't had him with me for two months. Way too long. 

I need THIS^ to get through life sometimes. I mean, wouldn't you? Look at that face. He's an angel. Except when he's killing and eating cicadas. 

I also got this card, from my bestiemoo. She always knows how to make me feel awesome. I think she knows how to make everyone feel that way, it's one of her gifts. For every ounce of social awkwardness I have, she knows how to connect with anyone. It's a great gift. 
I also had to officially resign from coaching my girls next year. I'm sure a lot of people guessed that was coming, but I planned on staying with them had I gotten better. I would've finished my last semester at UB and coached PHS soccer in the fall. I would've stayed with my parents during the week. Yeah, it would've been weird for me and Kevin, but he was supportive. He knew how much both finishing my degree and finishing one more season with this team were to me. 

I didn't even cry. I think I'm just so numb at this point, I'm accustomed to losing the things that I love, the things that defined me. So that's my week in a nutshell.

Tomorrow I start physical therapy, aka glorified stretching. I'm less than thrilled about it. I long for REAL exercise. Running down a field, receiving a cross and volleying it on goal. It's been a year now since I last played. Middle of June last year, when I broke my foot. As soon as that healed, my nerve stuff got bad. Let's hope it's not another year til I'm back at it.