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. ;)

Happy Holidays!

This time of year is always so hectic... And this year was no exception. I had a lovely holiday tho, surrounded by family and friends, and I got some pretty sweet gifts too!!

Unfortunately I did not make it through unscathed. I managed to partially tear one of the heads of my bicep. In the next couple weeks, it will either heal, or tear all the way through.

Goodie.

So other than my arm randomly trying to fall off, I had a great holiday. My little girl turns 5 tomorrow... Hard to believe she's getting so grown up so fast!

Head, Shoulders, Knees and Toes, Knees and Toes!

Things had been pretty uneventful over the last several days. I took the day off of PT yesterday as I was feeling under the weather and now I'm regretting it. Last night I got the strangest pain in my shoulder. It was definitely a pulling/tearing sensation. I tried putting my arm in several different positions, hoping it would release. Nothing worked. Today it does feel a little better, but oddly by bicep is completely sore and my arm feels "heavy." Almost as if I can hardly lift it on my own. Normally my shoulders are pretty compacted, but this one seems to be sticking out slightly further today, and it's also sitting a solid inch lower than the right.

Of course it's on the left side.

What the hell is happening to me?? I get the why, I do. I was just hoping for a break... Is there no such thing as a break when your body tries unravelling and tearing itself apart?

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:





Feeling A Little Defeated

I've been working really hard at both OT and PT the past 2 weeks. I'm tired, I'm sore all over, and I just feel blah. Yesterday was my designated stay at home with the kids day, and I just wanted to cry 75% of the day. It was SO HARD. I was just so tired... and my hands and wrists are just so shot, I couldn't wrangle the kiddo's like I used to. Previously simple tasks I took for granted are now next to impossible... Picking up my little boy, snapping him in his car seat, pushing a shopping cart...

I knew things were going to be different, that I was going to have to get used to the "new normal." I lost one career, the second is hanging in the balance. If I lose my identity as a parent too I'm not sure what will be left of me...

Keeping it together... barely.

In other news, still no word on my silver ring splints. The OT's suspect that the delivery may have been delayed due to the holiday. Fingers still crossed they arrive before Christmas... Silver lining indeed!

Edit:
Of course as I'm feeling all mopey, I pop on facebook and am greeted by this:

 

Point taken, universe. Point taken... ;-)



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

Seriously??

Dislocated a toe tonight. That was NOT fun. Apparently my body didn't get the memo that we are only blowing out one body part at a time. That was really annoying. Taped the toe to the next one over for stability. Perhaps I should look into toe splints too as my toes tend to bend over backwards...

And now I'm going to bed.

Annoyed...

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...

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.

Boxing Gloves Are ON

Last night I finally got a hold of my rheumatologist and really gave him a piece of my mind. I was polite, yet firm that "Oh well, nothing I can do" was not acceptable to me as a patient. I reminded him that he works for me, and that through my own research, I was not willing to let go of the possibility of Ehler's Danlos just because I don't have excessively stretchy skin. That is ONE symptom of many... ONE. He attempted to blow me off again and said "Even if you do have it, you don't have the terminal form and the treatment is the same - physical therapy. What does it matter?" I told him it matters to me to put a name with the face I've been dealing with for the last 20 years - that I wanted closure and to seek support from others with the same syndrome. That I wanted validation that there really IS something going on other than just a classification of a possibility. Joint Instability Syndrome is a classification... I want to know WHICH ONE. I also said that I wanted to know if this is genetic, if I should be watching for signs in my children, and WHAT I could/should be watching for. I wrapped up my piece by saying that I am young, and being told "nothing I can do" takes away hope and invalidates my fears and concerns as a patient. "Nothing I can do" means YOU'VE given up looking into it further. Sometimes all people have is their hope, and by saying that, you strip them of that hope. If you're not willing to look into it further, have the respect for your patient to tell them so. "There's nothing I can do, but lets look into who can" would have gone WAY farther with me, and I would respect you more as a doctor for admitting your limitations. There's no shame in not being a specialist in my weird anomaly  but for heaven's sake don't just blow me off!

After that he was quiet for a moment, then thoughtfully asked me what he could do for me. "If you come across a specialist or geneticist, you let me know and I'll get a referral written up immediately. If you need any changes to your PT script, please let me know and I'll do it. If you come across alternative medicines that you'd like to try, bring in what you've found and we'll discuss if it's appropriate to try or not. Also, who is your PCP? Make a list of all your symptoms and weird stuff in chronological order and lets get your recent lab reports over to her. You still have concerns about vascular type Ehlers Danlos in addition to hypermobility type? Your echocardiogram looked good. But huh, your blood pressure is really high, isn't it? Make sure you bring that up to her - we'll need to get that under control."

I feel like I was finally a part of my medical team. You know why? I was rooting for me and DEMANDED that the doctor start rooting for me too. I've been very lucky - My Orthopaedic Surgeon is a saint, my Occupational Therapists and Physical Therapist really listen to my concerns and offer suggestions - it's a shame this rheum was not as excited to be on my team as everyone else. I'm hoping my new PCP (I see her Tuesday) will be as excited to work with me as my current team and maybe she can offer a referral to a different rheum who will be more attentive and I won't have to do his job for him and pull teeth to get the care I need.

Finger Splints

Today was another day of measuring/sizing for my finger splints at OT. She gave me a set of cheapy plastic ones to try on one finger to see how they feel and see if they are effective for me. The difference I feel already is SIGNIFICANT in just the few knuckles I have braced. So now I just need a script from my Orthopaedic Surgeon (no prob there, she knows I'm an anomoly and will do just about anything I ask to make sure I am comfortable) and to run it by my insurance company and convince them it is a medical necessity. I think I'll send them the following pictures and see what they say...

Without Splint:

With Splint:

Do you see the difference? Because I sure as hell do. Plus I FEEL a difference. Typing right now doesn't hurt in that finger. I'd forgotten what not being in pain felt like... If this is it, sign me up. I'll start selling my plasma NOW to get my hands taken care of.

This Circus Needs a Ring Leader!

I mean that in all seriousness - the circus that is my current medical condition needs a ring leader - someone who can keep track of all the different specialists I'm seeing, open the lines of communication a little better and be able to point me in the right direction with what to do next.

A General Practitioner.

I don't have a home base to go to inbetween specialists. Someone who can really do the research for me and figure out the next best thing to try. I have essentially been acting as my own ring leader and quite frankly that shit is exhausting. I have a hard enough time scheduling all these appointments with physical therapy, occupational therapy, orthopaedic surgeons and rheumatologists... But now that I'm feeling a little stumped (and annoyed as hell), I'm not sure where to go next.

Hypermobility can be really frustrating. Some doctors will just claim there is nothing wrong with you, others will tell you it's just an inconvenience... I need to find someone who will actually LISTEN and then WORK WITH ME to connect the dots.

I'm going to call the rheumatologist right now and see what he says about getting a second opinion.

I will not settle for "I can't help you" anymore.

Pool Therapy

Today I went to OT and discussed silver ring slints for my fingers. The therapist was more than enthusiastic about it and got me sized for 4 fingers. She said she would discuss it with my other therapist and get them ordered for me. I think I'll have them measure my pink fingers on Monday. They sized my ring and middle fingers. We shall see Monday what the other therapist says. If insurance doesnt cover it, they are $81 per knuckle.

All I had to do was ask.

All this time I haven't been advocaing for my own health. All this time I haven't been complaining because I just figured it was "normal" to be in pain... in pain to the point I don't feel it anymore. Not good. And I hate being the center of attention. I didn't want

But I'm on the right track. I am not accepting the rheumatologists "there's nothing I can do for you" to mean this is the end of the road... it just means hypermobility disorders are out of his wheelhouse and I need to look into a second opinion, or find someone who knows more specifically about hypermobility. Someone who won't just shrug and say "you're skin isn't stretchy, can't be Ehlers-Danlos." My physical therapist was encouraging me to really push for more information/answers and not to accept "Sorry, nothing I can do" as a final answer. I told her I didn't even know finger splints existed until I saw her hands and a lightbulb went off in my head. She seemed genuinely pleased that I asked for them in OT.

Finally. Some people on my side.

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. :)

Starting MORE Therapy (and a bit of an JIS rant)

So while I was at the Rheumatologist last week, he asks "have you started your physical therapy yet?" No. I had just had surgery on my hand and was waiting to get that under control before I started additional therapies. "Ok, well I want you to start. Here's another script for pool therapy. And the flexiril isn't doing anything? Here's a script for a new anti-spasmatic medication..." Took the new meds last night (1/2 a pill as he suggested to start) and I didn't really notice a difference. BUT, it's the first night, I froze my tush off on the couch and I was lamenting the Tiger's losing the World Series. I'm not throwing my hands up in defeat that I will never sleep again just yet.

After my OT today, I swung by the physical therapy office and asked to make an appointment to get my pool therapy rolling. They were very accomedating with my OT schedule and the stars alligned just right as the therapist who will be treating me actually specializes in connective tissue disorders and has JIS herself. I am hopeful that this will give her the best insight as to how to help me. A little voice in the back of my head is chirping "beware!" as one of the draw backs to finding someone else with a rare ailment (unfortunately) becomes a competative pissing match of who's case is more severe and who has the biggest right to bitch and complain. It happens all the time, ESPECIALLY with a group of women. That very reason is why I tend to internalize my shit - especially my medical issues - as nothing is more heartbreaking than having your fears and frustrations completely invalidated by a complete stranger by saying "Why are you complaining? My case is soooo much worse!"

Is it slightly ridiculous that my brain immediately goes on the defensive that I've actually potentially found someone else that suffers from the same shit as me? Ridiculous. I should be rejoicing! In reality, I despise not really understanding what is happening to my body. It's my body, I know it better than anyone. But even with the reseach I've been doing, the resources just aren't there to help me grasp the "why" because, quite frankly, no one knows. I get it, there isn't a dedicated association for this disorder like there is for Lupus, Fibromyalgia, and the other heavy hitters of the connective tissue disorder world. Why? One simple reason - it isn't terminal. Not in the immediate sense. It's more of an "inconvenience" type of disease. "Oh, your body parts pop out of the socket? That's inconvenient." "Oh, your connective tissues are falling apart and there isn't a really valid reason why? That's inconvenient." See what I mean? Echo came back clear, so for now my heart is uneffected. GOOD. So now what can I do to "uneffect" the rest of my body??

We shall have to see what the new jiggley joint therapist says!

Autumn Jam

So in my usual fashion, when stressed, I turn to food. But today I made a jam I've never made before. Blackberry/Cranberry. HO-LY YUM.

2 6oz packages blackberries
12 oz cranberries
1/2 cup water (or apple cider)
2-3 Tbsp maple syrup
1/2 tsp cinnamon

Put everything in a pot and simmer until cranberries burst. Mash berries with potato masher and simmer for a couple more minutes. Cool or can as desired.

*adapted from Autumn Jam recipe on www.theculturedcook.com.

This is low sugar, gluten free, and full of amazing flavor.

Relief and Frustration

Relief - I do not have any of the other markers for Lupus, so that potential diagnosis is out. PHEW.

Frustration - There is nothing they can do regarding my joint instability syndrome. I just have to deal. I can continue to have surgeries that don't hold, or they can fuse my joints so they are no longer an issue, and that is it. No medications to slow it down, and they really don't know much of anything about it.

SO FRUSTRATING.

But I have my dietary focus now, so that is great news. And the Rheum wrote me a script for strictly pool work physical therapy. I asked the doc how he felt about a change in lifestyle and going 100% gluten free (I mentioned some of the research I had done) and he was completely supportive of me trying that avenue. "There have been reports of many people having great success managing their fibro pain and fatigue by cutting out gluten. I say give it a shot! It certainly won't hurt anything, thats for sure!"

So there I have it - an endorsement to take my health and well being into my own hands by a medical professional.

Turns out my Occupational Therapist is gluten free, can free, plastic free, pastured grass fed animal consuming, and raw milk drinking. 2 people in the last week have recommended the GAPS book to me, so I think I'll give it a look. It also turns out that a girl I went to middle school and high school with is a nutritional goddess and is very open to talking about health and wellness. My mom is going to go to the gluten free classes with me and she is looking into how much a membership is for us to use the pool at the local YMCA. I feel like all the puzzle pieces are falling into place to get this done right - and to be fully supported by family and friends. :-D

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.

 

 



Stalemate...

I had an appointment with the surgeon this morning and it appears we have reached a stalemate. My surgery has basically undone itself already (damn) and she said it would be pointless to attempt another soft tissue reconstruction as my body would just tear it all apart again anyways. She said she wants to wait to see what the rheumatologist says on Thursday before we move forward. She is hoping they will put me on some kind of "biological medication" that will slow down my body's tendency to attack itself. After we get that figured out, we can move forward. Otherwise, she said she would have to fuse the bones in my wrist, and I would basically have to decide what motions I would be willing to give up: either flipping my hand over, or extension/flexion of the wrist.

Not exactly what I wanted to hear, by any means.

SO! Now is as good a time as any to get me back on track from the inside out. To see what I can help/reverse by taking care of myself and really pushing my family to accept the nutritional changes I want to see happen. When the surgeon said "biological medicine" a little trumpet went off in my brain - I can affect my biology through diet. Now, thats not to say that I will refuse medication. I'm falling apart - literally. I need to get that crap under control NOW. But I also know that once I get on a medication to stabilize my weirdness, I may be able to wean myself off should I also get all of the shit out of my diet too. Heal myself from the inside out.

Its worth a shot. It certainly couldn't get much worse...

Food 101 - You Are What You Eat

Having allowed myself a little wallow time, I feel remarkably inspired to get down and dirty with how I can do something about what is happening to me. I've decided to focus on diet. I've always had a bit of a food obsession to begin with (bulemia in my teens/early twenties) and I've tried more than once to do a diet overhaul. I've had 2 factors that always lead to their failure. 1) I didn't completely buy into what they were saying - Yes, a plant-based diet does have many many health benefits... but lets be honest here, I like how tush (animal products) taste. I just don't like how animal products are jam packed with hormones, pesticides, antibiotics... and don't get me started on the treatment of those poor souls. 2) Crappy support. So does this mean I can never eat meat or drink milk ever again??

Thankfully, the answer is no. I don't have to give these things up!

I went to a nutritional class on Tuesday with my mom called "One plate at a time: Eating to beat diabetes, inflammatory disease, and cancer" lead by Lisa (The Cultured Cook). She was AMAZING. I seriously can't wait for next weeks class!! Not only that, but she has a course on gluten-free living coming up next month... I can't wait!! But I digress...

In the class we talked about how diabetes and disease reek havok in the body. We only lightly touched on inflammatory diseases, but the following information was more than amazing. We talked about how the body processes what we eat and how we can directly effect our health with our diet. Omega 3's are anti-inflammatory. They are found in high concentrations in green grass. Humans do not produce Omega 3's, nor can we digest grass. So how the heck are we supposed to get these amazing little powerhouses into our systems? By consuming something that consumes the grass! Lisa then introduced the idea that "organic" milk only means no hormones and no pesticides were used in the cows feed or injected into their bodies... but those cows are typically grain fed, not pasture grass fed...

The old atteche "you are what you eat" is true. But you are also what the thing you're eating has been eating.

For a warm fuzzy example of this in nature: Brine shrimp eat red algae. Brine shrimp are pink. Flamingo's eat brine shrimp. Flamino's are... Pink! Flamingo's kept in captivity that are fed a shrimp alternative are... White! See? You are what you eat. ;)

Now for the less fuzzy example... Store bought chicken. Those chicken are fed corn (sprayed with pesticides), corn meal, bone meal (from other chickens, mind you), and chicken litter (ground up chicken parts, feathers, feces, and corn meal that has fallen on the ground). It's enough to make you sick, isnt it? The chickens too, so they are given an antibiotic to keep infection and disease to a minimum. And since those poor souls can't sustain life in those conditions for long, they are given growth hormone to speed up their growth rate so they can be slaughtered before dying from disease.

Yum yum. Dish me up a plate of THAT.

So I have decided no more regular old store bought meats, eggs and milk. I'm done with that. No thank you!

Last week I purchased an 1/8 of a pasture grass fed cow. I currently have just over 50 lbs of assorted cuts of meat in my upright freezer. That should last me a little while. I'm also joining a co-op for my milk, eggs, and poultry. These are all pastured, grass fed animals. Oh, and no antibiotics or growth hormones for these bad boys. The milk is raw whole milk. I know, I know, poo poo me on that one... but is your milk full of Omega 3's? Nope! They've been cooked right out with pastuerization, along with a slew of other vitamins and minerals. Is it a little pricey? Sure... but so are all these freakin medical bills!! If you're in the Metro Detroit Area, check out Family Farms Cooperative We are talking SUPER reasonable not to mention supporting local Michigan farmers. I'm also doing away with canned veggies and plastic bottles for my milk storage... More on that later. ;-)

I'm excited!! :-D

Fun fact for the day: Did you know that if you buy 1 gallon of whole milk and split it between 2 seperate gallon jugs and fill to the brim with water, you now have 2 gallons of 2% milk?? How's that for stretching a dollar??

Falling Apart... Again

Todays therapy did not go well. Tendon is subluxing again which would lead one to believe the internal tissues that the synthetic tendon sheath were adheared to are too unstable to hold. The wrist is crunching again and I'm trying so hard not to fall apart emotionally too.

I'm disappointed.

I'm in pain.

I don't understand what the hell is happening to me.

To top it off? My right wrist is starting to hurt too. I'm feeling useless and broken. I haven't been really helping out at home. Granted, I'm technically not supposed to... but I've been sticking to it as I'm physically unable.

I'm getting frustrated with being in pain all the time. Its starting to affect my relationships with people. I'm typically a very quiet person when it comes to my personal life. At times, getting me to open up and share is like pulling teeth. But lately, I feel myself withdrawing from everyone. I guess I'm tired of people asking "how's the hand?" and me not having anything positive to say. When people ask, they don't want to hear anything other than "things are going great!" I admitted things were not going well to a patient at work the other day and the look of pity she gave me...

I don't want anyone to pity this shit I've been dealt. I do that enough for myself, thank you very much.

Tonight is a rough night for Keeping It Together...

Pushed Too Hard?

Had my 5th session of OT on friday. It did not go well. I had pushed myself pretty hard the day before with my home exercises and was pretty sore. Get into OT and my wrist was very stiff and swollen. The therapist starts to do a gentle stretch and...

*POP*

We both froze. I looked at her. She looked at me. Neither of use moved a muscle for a good 3 hard seconds. I swollowed. Hard. It started to hurt. She backed off the therapy for the day and taped my wrist. Told me to take a break from home exercise and just rest my hand/wrist the rest of the weekend.

"The tendon slipping has me concerned... I'm hoping that doesnt happen again."

Me too, lady. Me too.

I'm too depressed to say much else today. It was a bad pain day.

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.

Ooo! Pretty!

Well, my cast came off this morning. I forget how painful moving joints post-op after they have been immobilized is! Yeeouch! I'm taking it easy until I can get in to see an occupational therapist. And now that the cast is off, I can schedule my physical therapy too. I see the rheumatologist again on the 24th of October, so I'll probaby get lab results and what not then.

So here's my wrist post op... the incisions really arent bad and they will heal up lovely!

back of wrist: tendon repair and scope

palm of hand: nerve release

I still have zero feeling in my armpit from the nerve block and pain pump, but that may (or may not) come back in its own sweet time.

My hand looks so skinny in that picture... LOL! Gotta love atrophe!

No News is Good News?

Still no word back about my labs or my echocardiogram. I see the rhuematologist again in October, so I'm sure we'll just go over everything then.

Anyone else out there feel like Autoimmune diagnosis is a huge game of "hurry up and wait?" Get these labs done! Now wait... Get your heart scanned! Now wait...



I knew a diagnosis would be time consuming, but I hate the feeling of not knowing.

Sleep...

Everything I have read lately regarding living a healthier lifestyle is pushing "get plenty of sleep." I understand that during sleep is when your body resets and repairs. When your own system uses all those healthy nutrients you've been supplying it with throughout the day to repair the damage you caused it while you were awake.

Sweet. Let me get right on that. I LOVE to sleep!

Oh wait... I can't sleep through the night. I can't get comfy, can't tune out annoying hubby's snoring, can't turn off my brain...

So I tried cutting out caffeine last week. I ended up being crabby AND exhaused all the time... and still not sleeping through the night.

Rheum prescribed flexiril as a sleep aid. I wake up groggy and am still not sleeping well through the night. I just want some coffee... And pop... And SUGAR SUGAR SUGAR!!!!!

I admit, I totally have a sugar addiction. Yeah, I've been toasting marshmallows almost everynight on my stovetop this week. Healthy? Not even close... But tastes so good!!

I know my nutrition and lifestyle needs an overhaul. Starting is the hardest part, right?

So where do I start? No more proccessed sugar? No more gluten? No more caffeine? No more dairy? And how do I convince my family to hop on board with this? Annoying hubby has already stated that he will not give up pasta and bread. Flat out. Not giving it up. Period. I know I can swap out with GF options, but will the stubbornness and lack of support drive me to give up before I've even started? All I can do is try... Decide my life is more important than giving in to whining and kick my own butt into gear!

Wait, What Do You Mean I'm Not Super-Human??

So in my last post I mentioned a little bit about myself. One aspect was my annoying husband. So while I have been laid up with my most recent "put body parts back on" episode, I had been counting on him to step up his game around the house. Even before my surgery to get my hand put back together, I had been trying to prep him...

Me: You know, I'll be back in a cast again after my surgery... which means I won't be able to do jack. No dishes, no laundry, no changing the small boy's diapers...

Him: Yeah, sure, no problem babe. I've got this!

Here we are 3.3 weeks post-op and he clearly doesn't "got this!" The house had grown more cluttered, toys and stuff everywhere, dog hair in the corners, dishes piled in the sink, dirty wet towels on the bathroom floor... and annoying hubby comes home from work and complains about the mess, yet doesnt do anything about it. So yesterday I had had enough. I am not supposed to be using my left arm at all - so I attempted not to use it too much. The cast isnt waterproof, so that makes for a good reminder not to use it.

Let me tell you... if one handed dishwashing becomes an Olympic sport, I am headed for GOLD baby. Tho I admit, it was intensely awkward and I can only imagine comical to watch.

Kitchen? Cleaned.
Bathroom? Cleaned.

I even began sorting through childrens toys to be put away in their rooms.

I was a Domestic Goddess. A cleaning Super Hero, if you will. I was... a complete idiot.



While my family is basking in the glow of a little corner of cleanliness in the house, I am paying for it today. I hurt. My surgery arm burns like blazes and the rest of me is just sore. I over did it. I knew when I did it I would pay for it later... but I was just tired of listening to the complaining. And I know that all I did by giving in and getting it done was enable annoying hubby. Squeeky wheel gets the grease. Complain enough and bum-arm wife will do it for me.

I'm not Super-Human. Right now I don't even feel sub-human.

THIS is the hardest part of dealing with FM, JIS, and whatever auto-immune goodies I have brewing in my lab results... Not being able to do it all. I read an article about "Living with Lupus" and it did a beautiful job explaining how you only have so many spoons to spend per day. Each activity of the day takes a spoon and there are only so many to spend in a day. I'm not ready to admit I have a limited amount of spoons.

Joint Insta-what-now?

Ok, here's the low-down on me.

I'm 32 years old, female, 176lbs, have 2 small children, an annoying husband and we eat like crap. I know, not exactly "healthy." I've been battling dislocating body parts since I was 11. Mostly it's my kneecaps that blow, but I had my left knee reconstructed back in 2003. My hands and fingers are hypermobile as well. All was well until 2007. That is when I had my first baby and all hell broke loose. I essentially undid my surgery with all the fun pregnancy hormones that make your connective tissues go wonky (relaxin, to be more specific). Then in 2009 I had another baby. 18 months apart. WHEW! More wreckage as now I have diastasis too (seperation of the abdominal wall, giving me that always pregnant appearance. HOT).

In 2010 I started to notice something wasn't "right." Moreso than just my wonky joints. I was tired. REEEEEEEEEEALLY tired. All the time. I went to an internist. He thought I might have sleep apnea and sent me to a pulmonologist. Then that jerk of a doctor said "Um, maybe you're tired because you have 2 small children at home..." Gee, thanks. So I let it go.

February 29, 2012. I dislocated my forearm and part of my hand... by taking towels out of the dryer. Clearly this was bad news... Went to an orthopaedic and was put in a cast for 8 weeks. Cast came off and... hmm... somethings wrong with my hand. Sent to a hand specialist! She schedules me for surgery and strongly urges me to see a rheumatologist. I heed her advice and one week after my hand surgery, I am in to see the rheum. He is the one who hands me the mystery diagnosis of Joint Instability Syndrome. Oh, I also have Fibromyalgia to boot. Not to mention having an abnormal ANA blood test, so I just got all my labwork done yesterday to rule out Lupus. I'll keep ya updated when those results are in. Also had an echocardiogram to make sure whatever is causing my connective tissues to be "wispy" isnt doing the same crap to my heart.

Piece of cake, right? Shit...

What's In A Name?

Picking a name for a blog is like naming a kid... You want it to be profound, to be unique, to be "just right" in capturing your hopes and dreams and putting forth the message you want to be heard, loved, accepted.

Keeping It Together.

Yep. It's completely on point. Keeping It Together is exactly what I'm trying to do right now. You see, dear reader, I have recently been diagnosed with Joint Instability Syndrome - thus the swanky "jointinstability.blogspot" web address. I'm literally trying to keep my body parts from falling off.

So what exactly IS Joint Instability Syndrome?

Hell if I know! But this blog will be my online playground where I plan to collect all the little tidbits I can about this oddity, and YOU get to come along for the ride! Or, if you've stumbled across this blog as you too have been diagnosed with JIS, welcome to the party! Hopefully what I learn and share may someday help someone else who is feeling lost, confused, afraid, and utterly alone too.