Here's the Skinny...

Okay, I think I have my stuff together enough to talk about what happened.

Saturday February 22nd at 5:10pm I got a frantic call from my friend J* (names changed to protect anyone who cares to be protected). He says he can't get ahold of his roommate, Joe, and asks if I can pop over to the house to check in on him. I say no problem, thinking it was no biggy and he was probably asleep on the couch or his phone was broken or something. I drove over, thinking it would be a quick trip.

J* was on the phone with me when I pulled up. Before I pounded on the door, he said "Mer, this could be really bad... Make sure you make your presence known as you go in the house... There are guns in the house." You'd think I would have hesitated or thought differently or whatever, but I just did the usual Meredith "Dude, no worries, it'll be fine!" And pounded on the door.

No answer.

Went to the back door and pounded.

No answer.

I got the spare key out and opened the back door, yelling for Joe (the roommate). No response, but I could hear the dog going ape shit further back in the house. I walked slowly, continuously calling for Joe. No response. I came around the corner.

And that's when I saw him. Joe was propped up comfortably. Almost casual looking... Except that half of his face was missing. He had killed himself with a shotgun and it was a pretty brutal scene. I was still on the phone with J* when I found him, and to hear the anguish in his voice as I told him his best friend was gone... It broke my heart.

In that moment, I realized that nothing would ever be the same. I walked back into the kitchen and started to make a list. I wrote down the address as I knew I wouldn't be able to remember it off the top of my head. I also wrote "911" at the top, as I knew I had to call them too. Thing is... I was so disoriented I wrote 919... But I quickly crossed it off and wrote it correctly. Police were called at 5:36pm.

The next several hours were a blur. The police had me wait in my car, asking me questions I didn't know the answers to. I had to wait the entire time as I agreed to take the animals out of the house (J* was on vacation, the animals couldn't be left in the house). So I stayed. The entire time. The Medical Examiner finally showed up and did their investigation. After Joe was removed, I called D* to tell her the horrific news... and to ask for her help. I knew I was just about maxed out on my emotional stability, and catching cats was going to be the end of me. I went back into the house to assess the damage... I had asked the ME to pick up as much of the brain matter off the floor as they could. They said they would, but I wanted to make sure. They did a decent job removing the chunks, but it isn't their job to clean. I just wanted to immediately start cleaning, but I just stood there and stared at where Joe had been. Marveled at the splatter pattern. I knew it was out of my capability (Blood born pathogens and all).

D* really helped me keep it together. She's pretty freaking amazing.

So now here we are in present day. I'm trying so hard not to let it bother me. I've been counselor to many people about the incident, but I've lost J*. He's hurting so much and I can feel it. I reached out to him and he warned me that he was going to lose interest in everything, including me. I literally sobbed and begged him not to cut me out... In a later conversation, he said that he was avoiding conversations and people that remind him of Joe. Unfortunately I am sort of standing right in the middle of that shit storm in his mind. I told him that I would stand as far back as he needed me to. He said he would let me know. He's moving to AZ soon and then he'll be gone forever. And all I'll have left of our friendship is the memory of seeing his best friend blown to smithereens... and knowing that seeing and speaking to me causes him pain.

It sucks.

SO. To my dearly beloved friends who keep tabs on me via this blog... Please do not take my standoffishness personally. You all know that I will give my life for the people I love... For my friends. I took a bullet that day, guys. I gave up a piece of me that I know I will never get back. I don't regret it. I'm glad it was me. I know we all say we would do anything for our friends.

I've proved that I would.

I'm just reassessing things over here a little. Figuring out what my boundaries are. I'll be back up for air soon...

Day 8

Lets try this again, shall we?

Day 8

This is kinda fun!

Happy New Year

Trying something a little different... a video blog entry!!

Yeah, I couldn't figure out how to imbed my video...

Wow. My hair is getting really long. Now you get to see my face and hear my voice for once. :)

Post Op Appt

Just got in from my latest post op appointment with Dr Rohde. Have I mentioned how much I like her? Cuz I do. She gets my weird humor and gives it to me straight. My kinda Doctor!

Today I actually asked if I could have copies of my xrays and asked if I had her permission to use her name in this little blog o' mine. She gave an enthusiastic "yes!" and even asked for the URL. So if you're reading, Doc, "hi!"

It was a pretty straight forward appointment. Cast cut off, arm xrayed, follow up with the doctor. Its not quite where she wants to see it, so the cast is ace bandaged back on until I can get it splinted. She had suggested using one of my old ones... but they all have a bend in the wrist, and I no longer do. So custom splint it is!

I popped over to hands/OT after my appointment and gave them my script and scheduled my appointment for tomorrow. Then I will be FREE from this cast! YIPPEE!!!!

So progress is being made and I'm a happier camper than I was the other day. Pain still sucks, but it's gradually getting better.

Here's my show and tell moment!

Alrighty, first set of x-rays are pre-op (before my surgery). I was nice and put the left on the left side, and the right on the right side. SO! The right side is a fairly normal/healthy wrist. The left side is pretty jacked up. From the side you can see how my metatarsals (hand bones) are not lined up with my radius and ulna (forearm bones). There is a definite disconnect when you compare them side by side.

The dysfunction is even more obvious looking from the top down. Look at my right hand. You can see all my little carpals (wrist bones) lined up nice and pretty. Then look at the left - they are all over the place! Some are even up on top of the others! Definitely not quite right...

And here we have it... The postop (after surgery) final product. This is my wrist. My hardware. My plate and 8 screws. My hand is crazy atrophied (where the muscle shrinks away from disuse), so it is super skinny. My middle finger metatarsal is also slightly crooked to the left, so it gives my hand a slight bend to the outside... but I suspect as I build the muscle back up in my hand, it will flesh out and not be so noticeable.

There you have it, folks. I'll post pics tomorrow if my splint is finished.

I Dreamed A Dream...

I love this version. Haven't listened to it in a really long time. The meaning is so different now... living with a chronic illness that slowly takes away everything you love about life.

"I had a dream my life would be... So different from this hell I'm living..."

Its a high pain, low morale kind of day.





Then, on YouTube, while sifting through some of my favorite singers, I come across this gem:

 

Ok, first of all, Brian Stokes Mitchell is my favorite baritone (sorry Dad...) and this song really moved me to remember the bigger picture. Plus epic crescendo's always make my hair stand on end. In a good way.

 

 

Speaking of epic crescendo's, this one gets me every time too:

 



My favorite tenor of all time, Luciano Pavarotti. The final stance when he's singing guts out? He's saying "Vincero! Vincero! Vincero!" which in Italian sounds like "vini-cello." Translation?

I will be victorious.

 

 

 

 

I hear you universe... I hear you. Vincero!

Angry...

I've been in a pretty piss-poor mood lately. Mostly due to money woes, but also other things getting on my nerves. And in a time when words fail me, music comes to my aid.

I know I've been on a Mumford & Sons kick lately, but another song has me completely enraptured. Mostly because the sheer frustration/anger/fury is so passionately flung from their lips and instruments. I just want to crank up the volume, throw back my head and scream...

Broken Crown

Touch my mouth and hold my tongue
I'll never be your chosen one
I'll be home, safe and tucked away
You can't tempt me if I don't see the day

The pull on my flesh was just too strong
It stifled the choice and the air in my lungs
Better not to breathe than to breathe a lie
'Cause when I open my body I breathe a lie

I will not speak of your sin
There was a way out for him
The mirror shows not
Your values are all shot

But oh, my heart was flawed
I knew my weakness
So hold my hand
Consign me not to darkness

So crawl on my belly 'til the sun goes down
I'll never wear your broken crown
I took the road and I fucked it all away
Now in this twilight how dare you speak of grace

So crawl on my belly 'til the sun goes down
I'll never wear your broken crown
I took the road and I fucked it all away
Now in this twilight how dare you speak of grace

So crawl on my belly 'til the sun goes down
I'll never wear your broken crown
I can take the road and I can fuck it all away
But in this twilight our choices seal our fate

This song speaks to me. I've made "bad" choices, I've sinned, my values are all shot... I took the road and I fucked it all away.

Not just the lyrics, but the instrumental is amazing as well. Such an obvious outpouring of hurt and anger...

Interesting Side Effect...

Went to couples therapy Monday night. It was originally meant to be for us to work through our issues and learning to cope with the "new normal" together. But as I was seeing the councellor separately first, it kind of morphed into what can I do to make myself more comfortable, more stress-free, and the topic of me "taking a break" from my family was discussed. I had a breakdown and told hubby all about the things I had been thinking/feeling (wanting to leave, having everything planned out should I "accidentally" parish, not feeling happy, etc) and he was actually excited to go to therapy. I was so uncomfortable the entire time I was there, but I had some very moving moments of opening up about my past relationships - of what has brought me to where I am today.

I had an enormous breakthrough of letting go of past hurts... I have always been very envious of the relationship my mother and sister have, and as long as I can remember, my mother has always said "I don't want to hear it" when I would attempt to be closer to her - to share my life with her on a deeper level. I thought for years it was something I had said or done that caused her to have no interest in a deeper relationship with me. It wasn't until this therapy session that I realized it's not because she doesn't love me - it's because she loves me so much that when I share hard times and pain, it is just too intense for her. I can empathize with that completely. Its her defense mechanism that I had been misunderstanding as lack of interest/lack of caring. I felt a great sense of relief, a weight lifted from me when it finally dawned on me.

The rest of the session wasn't quite so warm and fuzzy (not that the previous realization was what I would call warm and fuzzy to begin with)... Hubby admitted he knew I wasn't happy, that he doesn't think I've ever really been "happy," nor does he really believe I'm capable. That was hard to hear, but mostly because it's true. We talked about how I internalize EVERYTHING and never really let things out. It was good to have that acknowledged.

But the strangest thing happend on the way home. I started to hurt... All over. And intense ache through every tissue in my body. I suspect I've not only been internalizing my mental pain, but my physical as well. I was not prepared for such a flood of physical pain. I am NOT a fan of that... If opening up and being a better person means being in chronic pain all the time, I'll take being an introverted hag over the alternative any day...

Taking a Step Back

My last couple posts have seemed pretty bleak, which is appropriate, as I have been feeling that way lately. I have had more going on then just my body falling apart. My family life is a little shakey right now too. I've been trying to vocalize my needs, and I am simply not being heard. Or I'm being heard, and then deliberately ignored - which in my opinion is so much worse. I mentioned couples therapy to the hubby and he was confused. "Why would we need that?"  Oh I don't know, so that you hear and maybe acknowledge what I say? So that we can BOTH be armed with tools for coping with the "new normal?" So that we can figure out a game plan for moving forward?

In response to me leaving and spending the night at my parents the other night (again, I was not being heard or deliberately ignored) he booked a long weekend where we spent our honeymoon... A thoughtful gesture, only we are also bringing the kids, and quite frankly we don't have the money to GO on vacation right now. So not only will it not be relaxing, as I'll still have to be Mommy and watch my kids like a hawk at a water park (they can't swim yet, so my anxiety will be through the roof - plus my instability in the water is pretty bad - all my braces have to come off) but then I'll have to worry about how this is going to effect our finances for the next couple months too.

His mother brought up that she heard we were going on vacation, and that she was excited about it. I told her I wasn't so sure about it, and she looked shocked. She rattled off the list of all the fun things there are to do and I just clinched my teeth and said "You're absolutely right, Hubby and the kids are going to have a great time." She sighed heavily and said "You know Mer, sometimes you just have to go along for the ride." I got so angry, I practically shouted "No, sometimes I have to be the only fucking fiscally responsible adult in the house and it is utterly exhausting. If we can't afford to go to Disney in the spring with the rest of you guys, we can't afford to go on a long vacation anywhere else either! Maybe I can schedule to have our heat and electricity shut off while we're out of town, since they are about to do it anyways..." She just looked at me like I had slapped her (well, I verbally did I guess) and my sister-in-law chimed in that it was time for a topic change as the tension in the room had gone through the roof. I said I was sorry and just looked at the ground.

I am ALWAYS the bad guy.

My father-in-law quietly said after "you know, I agree with you." It was a little validating to have someone on my side, but it was also so uncomfortable being there after my little outburst. I left shortly after.

Running away on a mini vacation is not going to make "this" go away, nor is it going to make it any easier for me. And undoubtedly, Hubby will set some deadline that the house has to be "completely clean" before we go anywhere, adding additional stress to what is supposed to be a fun thing. But since I'm the one saying this is a bad idea, or that we should think about rescheduling or something, I'M THE BAD GUY.

I'm not the bad guy, I'm the adult in this situation. In every situation.

I really need to take a huge step back from my life and really take a hard look at what is adding ridiculous stress to my life. If it's something I can change, I'll change it. If it's something that is unwilling to compromise or listen, maybe its time to let it go. Something has got to give, and I'm just tired of feeling like the only one who is bending/breaking.

I Think I Need Help

Today has been really hard. Every once in a while I'll get smacked with the idea that what I am going through isn't going away. It isn't going to "get all better." THIS is how my life is going to be.

How the hell am I supposed to cope with "this?" Granted, "this" isn't exactly new. I've been dealing with "this" nearly my whole life. But it just seems that "this" has gotten SOOO much worse in the past year. I mean really - who the hell dislocates their hand/forearm taking towels out of the drier? Who the hell tears muscle by simply being, or sneezing? Me. I do. And it's only going to get worse???

Today's depression tailspin is brought to you by a former massage client of mine. I haven't seen her in a year, and she came into the office today looking for me. She wanted to book a massage with me, and book one for her daughter and I had to inform her of my change in career.

Broke my fucking heart.

What's worse? SHE burst into tears and lamented that she could never go to another therapist - that she didn't want anyone else. God damn that was painful to hear. Amazingly validating that I did good work as a massage therapist, stab in my heart that "this" took it away from me.

I mentioned my blah-dom to my physical therapist and she gave me the name and number to her psychologist and the therapist that she sees. She strongly recommended I call them. She said that she probably understands better than anyone what this chronic illness/syndrome can do to ones mental state, and she really wants me to call them and see them before I really start to get antsy. I think I'll take her up on it.

Somethings gotta give. :-/

Thanksgiving

I hosted Thanksgiving this year and I tried to pace myself with all the food prep a couple days before. I still over did it and didn't ask for nearly as much help as I actually needed (I did a gluten-free menu this year). I've been paying for it the past couple days. Unfortunately my spouse doesn't completely understand that recovery isn't a one day deal. I still am in more pain than normal and I just feel weak. I've made the decision not to complain, as best I can, but my patience is non-existant today. It's not fair to my family.

But I do want to say that I am thankful for many things. I am thankful for a family who is trying to understand, trying to be supportive. I am thankful for a team of doctors and therapists who are working with me to get to my "new normal." It really is a blessing.

Open Letter to Spouse/Partner*

Dear significant other,

Please understand that I am going through a horrible ordeal. I feel terrible about inflicting my illness on you. I know that you're affected by my changes, and I wish it were otherwise. I dont want to be ill.

I feel guilty about my inability to shoulder former responsibilities at work and at home, dumping more on you. I wish I could do more or know in advance what I will be capable of each day. I worry that you'll think Im lazy or trying to dodge responsibilities I dislike, but thats not it. Sometimes I just cant, and other times I know it would be a mistake to use up all my energy on a minor thing and then have to give up something more important.

I want to know that I can trust you and that you will be available to listen and try to understand. And Ill try to understand that you cant always be available.

At times my feelings are irrational. My moods are erratic, and I get angry for no apparent reason, or way out of proportion to the trigger. This is part of my illness, and I'll try to keep it under control. I dont mean to direct the anger and frustration at you, but I will sometimes fail. If my mood swings become too hard to take and you feel ready to explode, please tell me so, gently. Maybe one of us can leave the scene, and we can talk about it later when we're both calmer.

Sometimes I need to talk about these irrational feelings. Just listen, okay? Please dont tell me how to feel or how not to feel. You can't "fix" my feelings. Please dont judge them; just accept and acknowledge them. When you say such things as, "your illness must be terribly frustrating for you," I feel understood and comforted. But dont tell me you know how I feel. You dont and you cant; no one can know exactly what this is like for me. And when I cry, dont try to make me stop. Please let me cry - I'll feel better later.

I know I complain a lot. It helps to relieve tension. If my complaining strains your tolerance, please tell me so. I wont like hearing it, and may not handle it well, but I really do understand that you need to distance yourself from my complaints.

I need to work at making clear requests so that you'll know what I need. It's not your job to mind-read - its my responsibility to ask for what I want. This is difficult for me; its easier for me to meet others' needs than to admit my own and ask that they be met.

Dont try to talk me out of my symptoms or remind me that they're not as bad as they could be or not as bad as they were. I know I need to stay hopeful, but if you take an optimistic role when Im feeling pessimistic, I feel as if you dont understand me and wont validate my feelings.

I know you dont understand why Im sick. Neither do I. Lets stay away from blame and acknowledge our feelings of helplessness.

Dont give up your whole life for me. Please continue to do the things that are important to you. I wont always be able to do them with you, so do them alone or with a friend. Sometimes I resent my limitations and your freedom, but I'll try to keep a healthy perspective. If you put your life on hold because of my illness, I'll feel guilty and your resentment will build. I appreciate your invitations to do things as a reminder that you still value my company. Please dont assume what I can or can't do; ask, and I'll answer you honestly. I hope you will understand that when I say "no," its not because I dont want to but because I can't or shouldn't.

I know I'm not the way I used to be. I'm trying to learn from my illness, from these changes, and you can help. We can't pretend that things are the way they were or that they'll ever be the same again. But as we change and grow, I want us to grow together rather than apart. Lets keep the lines of communication open. When I need to withdraw, I'll try to let you know so you wont take it personally. Please do the same for me. Don't just pull away; explain to me that you need distance temporarily so I'm less inclined to feel abandoned.

Because we're both experiences losses, we need to grieve. Some of our grieving will be solitary and some of it shared. Lets acknowledge what we've lost by mourning together.

Please dont try to make my decisions for me. If you see me wearing down and think I should rest, I value your observations and suggestions, but dislike being told what I should do. I need to take care of myself and you can help, but dont try to take over. Your encouragement helps me to do a better job of taking care of myself.

When you acknowledge my difficulties and my strengths, I might have trouble believing what you say, but I do need to hear it. Tell me you think I'm brave, that I'm fighting hard, that I'm weathering this calamity well.Tell me you still love and value me, and why. Small tokens help - a flower, a phone call, a card.

Sometimes I may be unable to hear you or I may even push you away when I'm hurting, especially at times when I cant love myself. I'll try not to hurt you, but if I do, please understand that Idont mean to reject you.

I know our sexual relationship has changed and that we both miss the way it was. My lack of energy and sexual interest is a result of my illness and not a rejection of you. I need to remain close with you in every possible way. Hugs are comforting and reassuring to me.

These are rough times for us. I appreciate the efforts you've made to help me cope and to be comfortable. I know I've been difficult to live with. At times you have been too. If we can get through these times together, our relationship will become stronger.

*From Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses by Katrina Berne, PhD

Finger Splints pt II

Got the rest of my knuckles measured for my finger splints. Now the battle begins to get them ordered/paid for by my insurance company. I have a back up plan if that doesnt work out, but I would rather not go down that road. So fingers gently crossed for insurance coverage. Orthopaed is 100% in support of the splints and said she will write the prescription for them. I may have picture updates in a couple weeks of my newly splinted fingers!

She has also given me the recommendation of a couple other rheumatologists whom she feels would be more appropriate. One of which is the same name that my moms PCP recommended (the same PCP I'm meeting with on tuesday!). I'll give this new guy a call and see what he says. Hoping he's more supportive and less of a shit than the last one.

Told both the PT and the ladies in OT about my verbal boxing match with poopy-rheum. They were all so proud of me for speaking up and not settling. I'm pretty proud of me too. :)



I also talked with the PT a bit today about the different types of Ehlers Danlos. She suspects I may have type I or type II, in addition to hypermobility type, but as she's not an MD, she can't diagnose me (which I knew, its just been nice to pick someone elses brain who knows a lot about it!). I think I'll do a couple posts on just the different types, just for knowledge sake.

Physical Therapy

Met with my new physical therapist... and I couldn't be happier. She confirmed my hypermobility in my fingers, wrists, elbows, shoulders, knees, and ankles. She asked me questions that no one ever had that made complete sense. I nearly burst into tears at the end of our evaluation and thanked her for getting it - for not treating me like a hypochondriac and understanding my body. She smiled and nodded and said "I get it. I know how frustrating hypermobility diseases are. Thats why I'm here to help."

She was wearing these beautiful finger splints. As I'm typing, my hand is actually hurting and I'm watching my fingers buckle over backwards. I will ask her for her opinion on finger splints and see if they help her - and if she thinks they may benefit me...

Productive introduction. I'm thinking I'm on the right track here.

She recommended getting a referral to a geneticist. She doesnt want me to accept "joint instability syndrome" as my diagnosis. "So there is a hypermobility syndrome... but which one?" I hadnt even thought of that. So I want to ask the rheumatologist about testing for EDS. I will give them a call in the morning.

Feeling pretty positive. :)

Food 102

I got home from my nutrition class about an hour ago and I am still SO excited about the changes that will be made in our household.

Todays class focused on how to blend this lifestyle into your current one. Again, Lisa did not disappoint with handouts that I can share with family and friends. I'm so excited to learn more. Its strange, I felt really connected to Lisa today... like the information she was sharing I just wanted to absorb and immediately share with others. Maybe once I've switched over our household and gained first hand results of wellness, teaching others might be in my future? I do love sharing information with others...

Take today for example: I got a ride to Whole Paycheck from my BFF. We are still down to one car, which makes simple tasks trying, but I digress. I had such a great time walking around the store with her, sharing what info I'd been learning. We talked about "organic cage-less" vs "pastured" eggs, the difference in nutritional value, and the cost of investing in your health.

Cost is a big stumping factor for most people. They way I look at it, I'm sitting on $5k of medical bills from AUGUST - PRESENT ALONE. $5,000 is a LOT of money!!! Thats an additional $96 a WEEK that I could be investing in better quality foods for my family that may reverse my pain and disability and keep my children safe from ever having to face this themselves.

If that isn't an eye opener, I don't know what is.

 

 



Occupational Therapy Begins

This morning I had my initial evaluation with the occupational therapist. First visits are always boring. Basically all she did was look me over, talk about my health history, and get my current range of motion measurements. The real fun starts Friday when I go in for my first session. She did give me a packet of exercises to start today, as well as scar massage she wants me to start.

I was pretty put out by how limited my ROM is. I cant yet turn my hand over. I know I need to be patient and this is going to be a learning process, but still. The notion of a "new normal" is something I'm having a hard time with. There are just so many "new normals" I'm trying to deal with all at once. Not sure which way is up. And I'm afraid to make personal demands... To really ask that my needs be met. I have to make it to these appointments and I need to make sure that I am demanding I have a means to get there. Sucks, but I have to make it work. With only one car, makes it interesting.

Blah.

Therapy?

I finally called to schedule my occupational therapy for my hand. I still havent called or started my physical therapy for the rest of my body as, quite frankly, I can't afford the extra $60 a week on top of the $60 I'm going to be spending weekly on OT. This "taking care of yourself" is some expensive business!!

Not to mention still being down to one car with no end of that in sight. I have a dead car in my driveway and no way to get to therapy on my own. So I have to rely on rides from friends and family. This is definitely a lesson in humility if ever there was one. I really struggle with asking for help, and this has been a difficult week for me.

My mom, the incredible individual that she is, brought over Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses by Katrina Berne, PhD. She has put little slips of paper in it, marking points of interest and adding little notes here and there. While I am still reading it, one of the biggest things that sticks out is An Open Letter from Patient to Spouse/Partner. I've been feeling really hurt and resentful lately, and I think giving annoying hubby this letter will be the big break through I've needed to express. I've been completely withdrawing from him, mostly due to resentment I feel towards him. If this doesnt work, then I'll know what I need to do.