Day 8

Lets try this again, shall we?

Day 8

This is kinda fun!

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!

Fusion It Is

June 27th I go back under the knife, hopefully for the last time for this body part. I can't believe my surgery is only 10 days away. I'm a little excited, but mostly terrified right now. I made the mistake of researching the surgery further and watched a video of an actual procedure.

This is going to hurt so bad initially... So bad...

I'm sitting here trying not to cry at the moment. I'm just feeling so overwhelmed, yet I feel like I can't say anything to anyone. I've hinted that I'm nervous to family and friends... but this is more than just nervous. This is it. This is the absolute end of my massage career. There is no turning back after this surgery. Granted I can't do massage NOW, but with my wrist fused, I have to look at alternatives to everything going forward.

Driving (won't be so bad, I drive that way now)
Eating (will be tricky. Try cutting your food with one hand immobile at the wrist...)
Typing (until my hand is fused AND I can pronate my hand again, I'll be typing one handed.)
Showering (I HATE bathing with a garbage bag on my arm... but it is what it is.)
Grooming (since my elbow will also be immobilized during the cast process, my hair will be an absolute mess. Which reminds me... I should think about dying it next week so I don't have horrible roots right away)

I'm nervous.

A Break

I mentioned I was going to head up north to my parents house for a bit of a break - a little reprieve of my life to just relax, heal, think, and be.

It was wonderful.

I sent an email to the bestie describing what I did, and I shall paste it here... Since it perfectly articulated what I did, why try to recreate the wheel. ;3



What I Did on My Summer Vacation

1) Ate Bacon

2) Ate Candied Bacon

3) Ate Smores

4) Ate Candied Bacon... ON a Smore (struck culinary genius with this one)

5) Printed stuff on tank tops

6) Made some crappy art

7) Took a (mostly) naked nap in the sun on the deck

8) Went for a hike with B'scotch

9) Ate Bacon

10) Played fetch with B'scotch for hours

11) Went for a 2 mile walk with B'scotch (walking in sand should count for 3x the activity)

12) Thought about who I've become - and that I don't care for her very much. Also thought about finally being honest with DH about who I feel I am - what I've been twisted into, and what I've done in the past. This TERRIFIES me, but I can't move forward with my head firmly wedged up my ass in the past. "You gotta put your behind in your past." 

13) Slept in a huge snuggley comfy bed.

14) Woke with the sunrise, went to bed when I was tired

15) Meditated

16) Did some gentle yoga poses/stretches

17) Laid in the grass and just listened...

18) Ate Bacon

 

Next time I will go up for more than 44 hours.

 

OH! I also took a couple baths... in the ginormous Jacuzzi tub. Just me and Buddha, chillin.

I suspect he's up to something...

Disappearing For A Bit...

So I've already been pretty quiet lately. Nothing overly different to say, I guess.

But tonight I am unplugging and disappearing into the woods for the weekend. I'm going to take my small dog with me for company, but that's it. No spouse, no kids, no friends... Just me and B. I'm taking my sketchbook and drawing supplies, stuff to make Ukrainian eggs, and another craft project for my 3-day training shirts.

My plan is to do some walking, take some pictures, create some art... And just be. No responsibilities. Just peace and quiet. It will be interesting. I'm sure I'll have something to say about it when I get back.

Be well, my friends. <3

Pay It Forward

I did something today I haven't done before. Not to this extent anyways... I paid it forward. And it felt GOOD.

I went to Michaels to get craft supplies for a fundraiser I have in mind for the 3-day. As I walked to my car, a young woman, who looked lost, scared, and overwhelmed approached me. "Excuse me ma'am... I am so embarrassed to do this, but do you have a couple bucks? Our car is out of gas and we have a long way to go. I'm so sorry to bother you..." She looked down in shame. Her clothes looked like she had been in the car... for a while. I looked at her, smiled, and said "do you have enough gas to get to the gas station?" She looked bewildered and stammered "I... I think so?" I nodded and said "Ok. I'll follow you to the gas station and put a couple bucks in your gas tank..." It was at his point one of her travelling mates got out of the car. "Heather, what are you doing?? We'll figure it out, leave that lady alone..." I smiled again and shook my head. "Its no bother... Can you make it to the gas station?" Her jaw dropped and she nodded. "Ok. I'll follow you."

It was as if the traffic Gods were smiling. During rush hour we had a perfect opening for both cars to turn left on a busy street. The lights cooperated and we were able to coast into the gas station just as their car ran out of gas. I walked up to the car, swiped my car and asked where they were headed. Heather chimed in they were heading to Alma or some such city. They mentioned they weren't from around here (the car had a Maine plate) and that they were literally stranded in a city they weren't familiar with, with no friends or family anywhere nearby. I nodded as I listened, thoughtful to what they had been through. "When was the last time you ate?" They looked at each other, then to me, then down at their shoes. "Its been a couple days..."

I looked to the driver. "Ok. Here's the deal. You, fill up the car. And Heather, come inside the gas station with me and pick out a couple drinks and snacks for your trip." Heather followed after me, thanking me profusely and praising God. We got a couple items and the other girl came in with my receipt. As I was purchasing the food, they both told the cashier that I was an "angel from heaven." He looked at them like they were crazy. When he looked to me, I smiled and gave him a wink. When we got back outside, the girls both gave me several hugs, thanked me profusely, and again said I was an amazing person. I smiled and said "I'm not an amazing person. I've done plenty in my life that I am not proud of. Plenty that would categorize me as far from saintly... But I have one stipulation to my generosity today..." They both looked so scared... "I only ask that you pay it forward. That if you see someone else who is struggling, you give them a leg up if you are able. That is my only request."

"Ma'am, you have a deal. You've saved our lives today... and we will never forget you." Another hug and they were on their way. I wish them well.

Random acts of kindness... They do exist... and I'm proud I was able to participate today.

A Hallow Shell

I downloaded a fun little horoscope app onto my phone, as I was curious what the stars had to say about things for me... So far it's been pretty on the money - saying that things are pretty tumultuous at the moment.

Todays said: You know where you are and you know where you want to be. That is the first step and the last step. All you have to do is fill in the middle and you're on your way!

Seems about right.

But there was something else about this app that caught my attention and made me go "hmm..."

The attributes of my sign are: Active, Demanding, Determined, Effective, and Ambitious.

There was a time when I was all of those things. I intimidated people with my determination and my demanding/commanding presence. Where did I go? When did I lose my "oomph?" I can feel little pieces of the old me trying desperately to break free. Pushing to the surface. Trying to catch a breath of air to bolster itself to finally break out of the hallow shell of whom I've become.

I want to get back to me. I want to be the intelligent, vibrant woman I once was. Now, I understand that I will never be completely the same. I know that my body is different now, on so many levels, that my physical self will never get back to the way that it was. I'm pretty ok with that. I've never been 100% comfortable in my own skin anyways, so this is nothing new. But lately I haven't been comfortable in my own head either. It's kind of a shit storm in there...

You know where you are. Yep. I know exactly where I am. A broken, faded, reflection of who I once was.

You know where you want to be. I want to resurface - to breathe - to rekindle the love affair with myself. To embrace my Active, Demanding, Determined, Effective and Ambitious self.

All you have to do is fill in the middle and you're on your way! Of course they make this part sound so easy... so whimsical, haha. Falling in love with me again means admitting I've falling out of love. With myself, with others... with life. I had forgotten what passion felt like. I had forgotten what inspiration feels like as it tingles its way through you, guiding you, proding you, encouraging you onward.

This week someone said to me "You are wise beyond your years. I almost feel dumb around you. You don't make me feel that way.. but you are just a smart girl." It was the nicest compliment I have gotten in a very long time... and it kinda felt like the old me was making an appearance again.

Hiding Doesn't Help...

Therapy Round 2 this past Monday. The session itself was pretty mild, the conversations after were a bit more indepth.

Then the 24 hours lag it takes hubby to process set in and it's been a whirl-wind since, to say the least. He's panicing, scrambling, smothering me... He doesn't understand that by doing that he is pushing me further away.

And I've been hurting. My whole body just hurts... and I'm not sure how to tell him I can't take anymore. I am having a really hard time hurting as much on the inside as I do on the outside. It's getting to be overwhelming. I can't make the physical stop or go away... I'm stuck with that for now. But I just want a break from the emotional hurt and pain too. I just want a little time away for myself to just breathe a little, regroup, find my footing again...

But even if I ask for it, I won't get it. I'll have to demand it, take it regardless of hurt feelings and tears, and power through.

This sucks.

And now he's acting like everything is fine. Hiding in plain sight...

Getting Something Together... Kitchen

Through a bit of teamwork between Hubby and I, and the use of my new canisters and labeler, the kitchen is in a much better place now. I'll be honest, it was bad. Really bad... I'm not going to hold anything back here... the before pictures are preeeeeety scary looking. But, here goes.

Before:

 After:

 

Before:

 After:

Before:

 After:

 

Before:

 After:

 

Before:

 After:

 

Before:

 After:

 

 

Before:

 After:

 

 

Clearly a vast improvement. Hubby and I agreed that if he and I tackled a room per weekend like this and maintained the past rooms we've attacked, the house will be amazing in just a couple weeks. I'm feeling better. Accomplishment will do that. :)



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.

Asking For Help

I've never been very good at asking for help. Ever. It's just not something I'm comfortable with - which I know is just one of those ridiculous mental flaws that I have.

But now that I literally am having a hard time doing what used to be normal everyday activities, I'm finding that I can't do things alone. As much as I think I should be able to...

So today I am single parent as hubby is off in California for the weekend being a good sport. Long story - not worth explaining. It just so happens that I have just about zero food in the house and need to head to the grocery store. With both kids in tow. AND I'm having a wicked pain day today after washing ALL the dishes yesterday by myself. So I asked a buddy yesterday if he could help today. Yeah, sure, no problem. Well turns out today that he is spending the day with the new girlfriend, so he won't be available to help until after 5pm. I was hoping to be starting dinner by then... So I told him no worries, I'll ask around.

Asked newest buddy and she is repainting a room in her house today, so she won't be available. Wanted to ask super bestie, but she just got home from a work trip herself and it was her first time away from her little baby. I don't want to intrude and bug her - especially because I think she might be at work today anyways.

Now I know beggers can't be choosers, so if I want someone to help me, I really need to be flexible to their schedules. Only... it's not just me - I have my little peoples schedules to tap dance around too.

I just hate feeling rejected when I already feel low. I know it's not intentional, but yeah... This is why I don't ask for help. The rare times I do ask I try to ask in advance, then when the person I was counting on bails, I'm screwed trying to find a replacement last minute. And then I end up having to take care of shit by myself anyways. So why bother asking in the first place?

Maybe I'll call my dad. See if he can at least meet me at the house after I get home to help bring the groceries in. Or my brother...

(sigh)

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. :-/

Wait... Disabled?? Who's Disabled??

While I was at physical therapy yesterday, I mentioned to my PT that I drive with one hand. Having only one hand that is completely attached at this point will usually do that. She asked how I steered, and I demonstrated how I do a flat palm "Dukes of Hazzard" spin around the wheel. She shook her head and pointed out how this may not be the safest way of steering my car - and she's right, one slip and I have no contact on the steering wheel. Danger, Will Robinson! Danger! Tho more likely... Lawsuit, Will Robinson! Lawsuit! So she made the suggestion of getting a steering wheel knob that I can grasp with the good hand and properly maneuver my vehicle.

"And did you get the device from Bed Bath and Beyond yet that helps you open jars?" Oh yeah, I need to pick one of those up too.

So I started looking online for proper steering wheel knobs and other "assisted living devices."

And it hit me.
Like a Mack truck.



I am disabled.



This isn't going away. None of it. The rest of my life will be spent within varying forms of disability. I was always embarrassed or ashamed after a dislocation when I was younger, but the light at the end of the tunnel was that I would grow out of it. That I would have the massive reconstruction to my knees and the pain, embarrassment, and shame would go away with it.

But it didn't.

Now before anyone attacks me for being embarrassed or ashamed of my disabilities, please keep in mind that I am not embarrassed or ashamed of others who have disabilities. Not one bit.

When I was younger, I would get teased for constantly being in and out of an immobilizer for my knees. Kids can be pretty cruel, and I tried pretty damn hard to fade into the background, to fly under the radar of the "popular kids" who had previously caused so much emotional harm. Having an "invisible" affliction is HARD. People can't SEE what's wrong with you, so they either have to ask, or just make assumptions and judge. I don't look sick.

The finger splints help as a visual marker to others that something is different. Most people assume they are jewelry, but are always amazed when they ask where I got them. I haven't had a single cruel comment about them yet. But I'm bracing for it. That scared, hurt little kid in me can't help but brace for a rock that might be coming.

I know I'm rambling, and jumping around. But when learning what the "new normal" is, it can be a bumpy road. Getting out my fears, concerns, sadness, and upset/anger are all part of the grieving process of losing the "old normal" (which oddly enough wasn't all that "normal" to begin with - but I wanted it to be). It isn't easy to admit that things are different... and aren't going back to the way they were before, no matter how badly I want them to.

My PT also recommended that I seek out a counselor to talk to. She said that coping with an invisible illness can be very stressful, especially when half of the medical community will tell you it's all in your head. I may heed her advice and look into it. I'm not very good at coping. Not by myself anyways.



In other news, saw the rheum of doom this morning. He refilled my script for more PT, and prescribed a mild antidepressant in an attempt to get my sleep pattern back on track. I am cautiously optimistic that it will help me sleep better at night. The kids also picked out a memory foam mattress topper for hubby for Christmas. We put it on last night and I woke up with the least amount of pain in my hips in months. Yay. Fingers crossed the combo of new meds and new comfort in bed will be the right cocktail for more restful sleep. See? Positive outlook at the end, in spite of myself. ;)

Two If By Land!

I've been pretty quiet lately... But today I have something to talk about! Today was my first day of physical therapy on land. I know that doesn't sound too spectacular, since I've been hauling myself around on land my whole life... but it's a little stepping stone for me in this journey, and I'm excited about it. It was HARD. New exercises for me to do at home in addition to my putty hand ones too. We are really getting down to the nitty gritty of why my knees are all out of wack (my muscles being built up so much to maintain stability on one side, completely weak and unstable the opposite way). It's really nice having a PT that "gets it." She doesn't push me beyond my limitations. She questions when things pop or crack, rather than have me "push through it."

Such a blessing.

I see the PCP I adore on the 26th, and the rheumy of doom on the 27th. The PCP actually mailed me an article and brochure about "living with hypermobility syndrome." because she researched it and wanted to make sure I had seen it! LOVE HER. Rheumy of doom just said "thats inconvenient" and wrote me a script for new drugs. Hmph. Guess I know where my allegiance is tied...

Discharged From OT

It's hard to believe, but as of today I've been discharged from OT. My most sincere thanks and gratitude go out to Marilyn and Kelly, my compassionate, brilliant, amazingly wonderful OT's. I've already friended one of them on fb, and I'm sure I'll be keeping in touch with the other. I feel overwhelming gratitude to these women, who have been so instramental to helping me achieve the tools I need in order to be successful. They have been nothing but 100% supportive along this leg of my journey, and I can honestly say they have been a blessing.

Marilyn and I were discussing today ways to make splints and braces more "beautiful" and I think I may be on to something... I came across a really cool bracelet on Etsy that I may be able to incorporate into my bracing. And it appears it may be easy enough to make on my own. Marilyn even gave me some extra foam and told me to give it a try - and to come in and show her if it is a success!! :D

Here's the bracelet I was looking at:

 I was thinking I might be able to wrap it on top of my already existing brace, or incorporate it into becoming an actual brace itself. I may have to check out Michaels to see what clasps they have, and possible medallions. Maybe a new calling?

Silver Ring Splints

Someone got a Christmas present early... My silver ring splints arrived!! We somehow managed to miss ordering my left thump DIP joint, so that one has been re-ordered... but the rest are in my possession and on my fingers. I'm typing with them on RIGHT NOW. And I have to be honest... My fingers feel AMAZING. I cried at OT today as I zipped up my jacket to leave - I could actually zip up my jacket without any knuckles buckling. They didn't hurt. It was AMAZING. I feel so blessed to have these tools!!

Now to that I feared would be the tricky part... I needed to figure out a way to store them when I have to take them off! There are currently 17 of them (soon to be 18) and they are all different sizes. Well, technically 3 of them are the same size, but I just have to learn/memorize who goes on what joint! So I mentioned this to hubby and he suggested something really quite helpful! He went out and purchased a foam core block that has sections that punch out - it's originally used for storing miniatures - but it worked out just great for the rings! I punched out individual homes for each ring, and there was enough room left over to also create spots for my wrist brace and both thumb braces. Yay!!

And now, for some pictures!

What they look like from underneath:

 

Fingers all braced up and ready to go:



 My fingers look really really swollen in this picture:

Storage container, with all rings and braces inside:

 

Silver rings looking all sparkley and pretty:





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

New Wrist Brace

Today started my new schedule with OT and PT. I spent a whole hour in the pool today and I am SORE. But sore in a good way. I'm hoping I learn enough excercises in PT to keep supporting my sloppy joints after my visits run out for the year.

At OT I was fitted with a new wrist brace (finger splints should be arriving in the next 2 weeks). The new brace supports the distal head of my ulna and there is a secondary strap to force my thumb into flexion at the MCP joint. We learned today that my left thumb hyperextends and locks if not supported. This is kind of new for me, but it's been a while since my thumb was really worked on/looked at. Here's a couple pictures:

Back of wrist:

Palm (as best I can):

My wrist is REALLY sore this evening, but I'm assuming that was from 1.5 hours of therapy and a new brace that doesn't act as an immobilizer. We shall see how I feel tomorrow. New PCP told me to avoid taking NSAIDS and other anti-inflammatories. I think I'm due for one tonight. ;)

It's Been A Good Week

This week really has been good! I have "hired" a new primary care physician whom I REALLY like(she spent an hour talking with me... an HOUR), I was approved by my insurance for my silver ring splints, the OT is actually ORDERING my silver ring splints (yesterday, actually), I will be spending more time with my PT in the pool as of Friday, my car should be fixed by Saturday (Monday at the latest), my OT is also making me a custom splint for my L wrist so I can ditch this stinky dirty old brace - it will support my EUC, hold the distal head of my ulna down, and give me more mobility.

Heck yeah, a good week!

With the good must always come a twinge of bad. Last night I couldn't sleep as my hips, knees and ankles hurt so bad. It was pretty awful. But I'll gladly take all the good things that happened this week if I've only had one kinda poopy issue. The good FAR outweighs the bad. :D

Meeting a Potential Ring Leader...

I'm heading in to meet a new Primary Care Physician today. I'm really really hopeful that this will be the beginning of a great relationship. I contacted the rheumatologist that was previously recommended, but he's not accepting new patients until February 2013. I'm just hoping that she will be willing to help be my ring leader. I'm trying to compile a list of all my symptoms and issues and see if she can help with connecting the dots. Fingers are crossed! I'm sure I'll update later with how it went.

I also contacted my insurance company and they will cover my silver ring splints 80%. So that has saved a TON of money! Hoping to get those ordered and shipped asap! Since the weather has taken a turn for the colder, I've been in more pain lately.

I'm also contacting a lawyer to discuss social security disability benefits. Its worth a shot to at least talk about it. I can't do massage any more. I can't type effectively with one hand, nor can I do filing. Kinda makes my 2 career backgrounds obsolete. Looking into additional careers that don't involve your hands is HARD. So far I'm looking into energy work - reiki, craniosacral, etc. My OT's also suggested becoming a COTA (certified occupational therapist assistant) as they said I have the right personality for it, and the money is good. I'll look into it. :) I just don't know what to do in the meantime...