BeD HoG..

Not sleeping tonight leads to blog post.  I’ve been doing pretty well in the sleep department as of late.  Which I enjoy and I think helps to make my days a bit more productive.  This night however has seemed unusually long.  Which is unfortunate as Jason is trying to sleep. 

I finally relented and am on the computer.  I have just caught up reading a myriad of blog posts that had built up in my Google Reader.  I love GR.. Just saying.  When I started moving around Luka too thought it was time for him to get up on the bed. 

The good and bad things about letting your dog (Assistance Dog or Not) upon your bed…

I will start with the bad. 

Dirty feet.  No matter how hard we try he has dirty feet.  Which require us to do extra washing.

Bed Hog!  100 pound Dobermans take up just as much space as I do.  Seeing as I only weigh a small amount over him…  Thank goodness for a King Size bed. 

He things he owns the bed.  Well not really, he always asks permission to get up here.. but he is getting really spoiled and now has second thoughts about having to sleep on his floor mat. 

He wears a cone to bed.  Yes a Comfey Cone.  Which prevents him from chewing on his allergy ridden feet.  If you recall he is allergic to grass, dust, foods, etc.. which makes pretty much any environment a hazard for him.  100 pound dog with an appropriate sized cone on his head.. makes an even bigger dent when it comes to bed space.

Right now I am relegated to the top 1/3 of the bed on the left 1/2.. Jason has the other full 1/2 and is hopefully sleeping peacefully. 

 

Ok now the good.

When Jason is gone, it is nice to have Luka up here with me.  Many times I will wake and his head will be rested on me.  I love that. 

When I am not feeling well it is magnificent to have him curled up with me.  I feel as if I am not alone.  Most of the time Jason may be gone.  However even if he is here, snuggling up with me when I am feeling crappy isn’t his strong suit, and he has tons of other things he is trying to get done… Laundry, dishes, work..

It would seem as if the bad outweighs the good.  It would seem that way in writing.  But emotionally, it is worth all of the bad to have the good. 

 

Growing up I would bribe my sisters to sleep in my bed with me so I wouldn’t be alone.  I don’t think they ever got much sleep as I tossed and thrashed about so badly.. But I always slept great and I never got cold.

Sometimes it is nice to not be alone.

 

Blessings & Sweet Dreams,

Pink Doberman

HoW i FoUnD mY DiAgNoSiS… My AdViCe..

 

I am writing today a post for a blog carnival that is to be hosted on one of my favorite bloggers sites.  The Carnival will be posted on the 26th of January.  A blog Carnival is where several bloggers write about a common topic, and one blogger will be the “host” and post all of the links to all of the different posts on the same subject by the different bloggers.  It is a great way to connect with others and increase awareness and enjoy differing perspectives.

TOPIC:  What advice would you give to those, who have been recently diagnosed with an illness or are going through the process of diagnosis? - Any experience or tips you would like to share. Any words to give strength or some straight forward facts. Any clinical information, specific or general. Anything that you feel someone had told you. 

To let you know a bit about PFAM- Patients For A Moment- it’s a patient-centred blog carnival initiated by Duncan Cross to build connections within the community of people who blog about illness, disease and disability.   Thanks to Leslie for carrying it on and to Shweta Chaubey for hosting this edition! 

 

 

My thoughts…. for what they are worth..

When I was blasted in the car accident over 6 years ago, the last thoughts on my mind were that the Dr.’s that I would be seeing had no clue what to do with me. 

For as much as one learns in medical school it is never enough.  The sad thing is that I had the idea that Dr’s knew it all, and I was not to question them.  They give that impression they never tell you that they are not sure, and if they don’t know what they are dealing with it is very few who will admit it. 

To get a diagnosis, this is what I had to learn.  Look out of the box.. Not out of the medical establishment, but look toward Dr.’s who would research for you who would continue to refer you to other places.  Who would never get upset if you second guessed there thoughts.  The most defensive were usually the ones with out a clue. 

Look toward others who are suffering right along with you, scour the internet, blogs, support groups of other people.. tell others what is going on with you, writing this blog, and sharing what I was having troubles with was a key factor in one of my diagnosis. 

If you are looking to someone to diagnose you, start with doing what work you can for yourself.  If you are working to help someone else fine a diagnosis you can do the same thing for them.

Make a list: 

Identify everything you can think of symptom wise.  Even the insignificant things.  I began my list with the details of my auto accident.  I also included similar experiences of family and friends, as they turned out to be key in diagnosis of a genetic issue that hindered my improvement.  I just slowly added things as I could recall. 

Start your list, and continually go back to it updating it.  Add also if you can recall the date or approximate date that the symptom happened.  If you’ve experienced things longer than you can recall, make sure that you list those things as well. 

In my life many of the things that I had always thought were “cool” about myself were the things that had been the beginning of some of my troubles, and the key to one part of my mystery. 

Ask others what they see that is going on with you.  You may not be able to personally identify it all.  For example I was having issues thinking.  I still had all of the same thoughts they were now just in slow motion much of the time.  I had just gotten used to the slowness, it wasn’t until someone else shared about it that I recalled the way it used to be for me. 

Allowing others to help, and not turning people away when they offer well meaning advise.  It was a dinner with friends, one of my girlfriends eats Gluten Free… I researched it so I knew what she could have.  Later I realized that I had subconsciously been avoiding gluten and I was feeling better for it.  I spoke with the Dr. we did one of the tests, it came back that gluten was not a problem, the test we did was the easy one, and I really did not want to go through the other one, so I just did my own test to figure it out instead of the more invasive one.  I just stopped eating gluten.  Big changes happened for me.  I am glad I listened to my body.

Have faith that you will find the right diagnosis, with out a proper diagnosis, you many times have no clue in which to head.  However even with out a proper diagnosis, it shouldn’t stop you from doing the best you can to be healthy.  Eating simple foods from basic ingredients, in proper amounts.  Reducing anything that is premade or made with sugars, artificial ingredients, talk to a dietitian many grocery stores have one you can talk to for free that will give you a proper shopping list and recipes as well.

If you are not going to treat yourself well, how can you expect to go to the Dr. and get them to give you their best when you don’t even give your best to yourself. 

Small things, like holding your tummy in for two seconds 10 times a day or squeezing your buttocks, straightening your foot or flexing here and there..  You don’t have to be out running a mile or walking one either.  But what ever you are able to do figure it out and do it.  If someone else tries to do it for you when you can ask them to let you.  As long as you have the spoons for it. 

I fought for myself.  After years of thinking someone was going to figure this out and “fix” me.  I figured out, that I had better get with the program.  I stopped listening to the placation, the extended… Oh, well, you must just take longer to heal, or I can’t find anything wrong…etc.  I stopped.  I took control of what I could and that includes seeing different specialists, and pushing for more. 

One other thing that really helped was having someone else to advocate for me.  My husband who has and had gone through this all with me, who watched and listened to me wretch and moan in pain with every breath, for years, was now becoming my advocate.  When Dr’s wouldn’t listen to me he stepped in.  They listened to him. 

Find yourself and advocate, just another person to corroborate your story to the Dr.  I know it doesn’t seem like much but realize that Dr’s also do not know who to trust or what to deal with first in some cases.  Help them help you.  Help them hear you. 

On the note of writing your symptoms down, also write down what you are doing for yourself to create wellness.  Write that you now drink water instead of soda.  Write that you are avoiding xxxx foods… Tell them that you are doing xyz exercise on your own in addition to what they have already suggested for you. 

Let them know in writing that you are working to help yourself.  If they see you doing your best to help yourself, you will make them a stronger team player for you.  Don’t complain and whine at them.  Keep things as simple and focused as possible, and have a short list of things you need. 

If you hand a list of meds to the nurse that you are needing refills on or wanting to try, she/he can work on that while you are talking to the Dr.  Make a plan to work on this now, and then come back in 2 weeks to work on the rest if you have a longer list.  Or when you book the appointment, ask the receptionist to schedule you for two spots. 

Be nice!  Be very nice.  Make them want to see you.  They are people too.  If you wouldn’t want to be around you then no one else including those whom you pay will want to be around you.  There are other ways of expressing to others how horrible you feel figure out how you can best express how you feel with out it involving blame anger resentment and feelings like that. 

Believe me I am angry, but the anger will kill me.  The happiness I feel focusing on the positives can cure me.  This does not mean I ignore what makes me angry, I just find more positive ways to deal with it. 

I write.  If you are better at speaking then you should vlog (video blog) or maybe you draw, take your time.  I know that my Dr’s put my list of issues and improvements, and discouragements in my file.  I carry this list around to my appointments, updating it every few months or so. 

I used to think that if they thought xyz about me was important that they would ask.  They didn’t even know to ask.  Dr’s forms are very generalized and don’t have room for very specific information that is relative to obscure issues.  These forms also don’t lead you much into telling more information.

When you hand their filled out forms along with your list of issues that you’ve created, that includes dates and symptoms, issues you have as well as what you have tried and are already doing to get better, you can give them a more complete picture.  Don’t forget to list all of your medications, even if they are the one’s who prescribed them, what you have learned from other Dr.’s and what medications you have tried that were not successful.  Be sure to include anything that helped you to feel better, and what makes you feel worse. 

Now that I have figured out what my “diagnosis's” are on that paper I have also written the Doctors who diagnosed me and when.  I include their contact information and any thing else I can come up with that may be helpful. 

Chronic patients are difficult.  My doctor loves seeing me.  I am like a breath of fresh air for his office.  His receptionists like me, they get me appointments easily now, the nurse’s deal with me swiftly, and the Dr. is always greeting me and excited to see me.  My doctor does not know it all, but I am not looking at him to solve it all for me.  I am looking at him to listen enough to what is going on with me to know what direction to send me next and to support me in my efforts, and steer me correctly when I need it.

Now I fully realize that what has worked for me and what I have learned, and what I can do are not going to work for everyone.  However, if this has helped you or given you some ideas as to what may work or what someone else might be going through then I hope you come away happy having learned another perspective.  I know there are those out there who are only able to blink, or may only be able to move their thumb, or may be dealing with dying. 

This is just my story about what has worked for me.  I hope it gives you greater understanding. 

Receiving your diagnosis is just one part of your journey.  If you don’t have one, don’t be discouraged.  Believe in yourself, treat yourself well, and know that you deserve to have as great of a life as you can manage.  Love others and let them love you.  Help others and let them help you.  Life is not a path you should travel alone, so don’t push people off of your path because of how you feel.

Learn to accept how you feel, and learn to accept that no one else in this world can understand exactly what you are going through.  Accept it and learn that what is more important sometimes is trying to understand some one else’s perspective.

As a note it was over 6 years after my car accident that my problems were given a label, don’t be discouraged.  Keep on going.  You are worth it!

Wishing you many blessings, speedy diagnosis, and a pile of love and understanding,

Pink Doberman

 

P.S. I am a member of the group Chronic Babe  you can be a member too, it is free.  There is a link to it on my blog page, in addition Yahoo, Facebook, Twitter and other places have some very good groups/links where you can connect with others who may be having similar issues.

Spoon-Filled Exhaustion

Do you ever wonder what you’ve done in your day that gets you so tired? 

Today I have done just that.  I woke up around eight am after having slept I’d say since midnight or so.  Which is pretty good for me.  I hadn’t heard Jason sneak out to take night pictures either.  So I was soundly sleeping.  I had taken migraine meds before sleeping as I had one.  I woke and it was gone.  Which was great as I had gotten rid of it before actually falling to sleep. 

I fiddled around on the computer, and drank my morning cleanse.  Jason went and got it for me this morning.  I noticed a bit later that my right side was flaring up.  Which is a sure sign of a migraine starting, so I once again took my meds.. Managed to stay awake long enough for Jason to leave for town to run errands.  Slept until he called me. 

It was a good thing he did call, because I had been dreaming and he was in trouble with me in the dream.  I dreamt that he had let me sleep until six that night.  I was livid.  Anyhow, this was not reality.  He called at a half past noon.  Asking if I might need anything else.  I sounded terrible I gather by the tone of his voice on the other end of the phone. 

I had to keep reminding myself that it must have been a dream in which I was so mad at him and in reality I was not.  So in other words… be very nice on the phone!  I was, I was also extremely groggy.  Now this grogginess lasted until about three that afternoon.  When I finally mustered up enough brain power to make it out of bed.  I had plans you see, and I was frustrated that I wasn’t gathered enough to make them happen. 

Sometimes in life you just need to always be aware that there is lemonade no matter how many lemons you see staring you in the face.  Today was no exception.  While I hadn’t gotten much accomplished, I did manage to fold a load of laundry, wipe out part of my shower all be it not very well, and get a surprise we’ve been working on started. 

Not to bad.  Of course now by nine this evening I was completely exhausted, I’d only been up now for six whole hours, and as I type this it has been eight.  I am drained exhausted, physically aching.  I must say that I did manage another trip out today, the trip out yesterday I am sure is the one that resulted in me getting two migraines, however the trip today I guess was enough to make me clearly wasted as well.  In addition I did also manage to get 10 minutes of bike riding done which did not happen yesterday. 

It was all fun, and all worth it.  I feel as we are accomplishing something together and I love that feeling. 

Even though it has resulted in a pretty exhausted body of mine. I guess I will just rest again until I am all caught up. 

Even though I have few spoons I feel I have used them wisely to accomplish something.  I am happy about that!  (Spoons are a term that is used for folks who have to choose what they do each day very carefully, each spoon represents an activity or action.  Some people may only have a couple of spoons available to them each day and others may have unlimited.  Those with disabilities, usually have fewer spoons and have to use them very sparingly in order to insure they can accomplish something.)

Click to ready the Original Spoon Theory Story.  It is a short great read!!

I hope you had a spoon filled day! 

Mine has been grand,

Pink Doberman

DiPpY HiPpY

Well as you might imagine this post is going to be about my hips.  I am frustrated.  It used to be only the right one would get hung up.  Now the left is doing it too.  I guess I shouldn’t be all that surprised, after all they both slip out. 

I haven’t figured out how to be able to wiggle them around enough to slip them back in, everything I do has caused more pain or been ineffectual.  I did have a Physical Therapist who had gotten the hang of it on my right hip.  It wasn’t an easy thing or a pretty one but it worked.

After DaaaaYS of it being off, last night my left hip finally had a nearly drop me to the floor while I was getting off of the bike recovery moment.  I’ve been trying to peddle anyway, some days I could only get a few minutes in others I might make it to five or to 10 minutes which is my goal.  Last night I made it five minutes before deciding the pain had grown to fast and I needed to stop.  In lifting my right leg up over the bar of my recumbent bike and while letting it down on the other side as I was getting ready to stand, well, my whole pelvic region did this crunching popping twisting… which resulted I believe in my left hip being properly seated.  However the pain this caused was intense and I felt very unstable.  

Of course Luka hearing my discomfort screaming ( softly as I could, as Jason was sleeping already ) ran to the other room to insure that what ever had happened to me wasn’t going to happen to him… Chicken..

He did come back after I called for him, Jason never once waking up.  Ha!  My man was beat.  Luka helped me back to bed and then Jason woke up.  My very gracious man settled Luka in and then dozed off immediately. 

My hip is still sore.  It is angry and I think I need to tie my knees together to insure that my hips don’t splay to much today.  Which to me is not at all a fun thought.  It might just be the less painful way to make it through the day though.  It is going to be considered. 

Instead I am wearing my very tight jeans in hopes that they will keep my hips securely locked into place so they can stop yelling at me for my lack of strength and tightness. 

Ha Ha!!  I guess you could call me loose.  =) Which is certainly funny. 

Please note:  I inherited my mother’s horrible sense of humor.  I try to control it.  As most things I think should be funny usually turn out to piss someone off or hurt some one’s feelings.

Additional Note:  Perhaps more importantly.  I am a drama queen.  Yes.  I know the truth hurts.  DQ is really all about being me, and getting what I want, so stay out of my way people. 

…. Just kidding.  I am a Drama Queen, but please don’t stay out of my way.  I like to have people around so they can get mixed up in my drama. 

I am going to get back on the “horse” again today, and give myself some more exercise.  Not quite ready to do that at this moment but I will before I go to bed.  I had been trying to get 2 ten minute biking sessions in.  I am now down to one and if I can manage it I will be thrilled to do two. 

Life is funny.  So am I but if I start getting funny you’d better run.  I may have permanently damaged you in some way.  Really the truth?  I am just a big dork that is having difficulty amusing herself at the moment. 

Oh the joys of being alone in the house to long.  I might be going mad.  We’ll I am not mad have you looked outside lately.  I would really like to go somewhere, but it will be days before that happens.  And it is cold out there and I AM warm in here.  So I will just continue amusing myself at your expense.  That is if you are still bored enough to be reading this.

 

 

I was tired, I slept for nearly 3 hours shortly after writing the above message.  I think I might have been loosing my mind..  Oh the joys!

Anyhow now that I am feeling much better, I am going to try and get a few things done around here..  I am drinking my shake for lunch it is past two but that counts I think. 

Well I’m having a good day and am looking forward to my bike ride later. 

Blessings,

Pink Doberman

 

 

ToDaY..

Glasses are back on.  I have not been back to the Dr.  But I was feeling foggier and a mess again… Glasses back on today.. much better day.  Happy about that. 

I do have an appointment, but it isn’t for a while. 

Other things are going well which is nice.  My internet service has been fixed.  No more getting kicked off every 5-10 minutes!! Woo HOo!!!

Luka well, his feet are still messed up from a couple of weeks ago.  He lost a bootie and we put a small booty on him, it messed up two different feet.  So he is back to being an unhappy cone head.  =(.  Means we really can’t go out together, as his feet are messed up.  And he is sneaky, if you take his cone off the next thing you know he’s chewed on his feet again.  So.. Cone on.  Full time for the next however long until his skin is healed. 

I did get more Muttluks ordered.  I got four more pairs, as the last batch of them that he is wearing now, has already gotten holes worn in them.  FRUSTRATING!!  I am going to try adding Sugru to the bottom of one of the pairs.  I can have hope I guess.  The Sugru has worked on the chair for my new to me recumbent bike.  I should really take a picture. 

Speaking of Sugu.. I used it to mount hanging devices on some Christmas presents we gave out.  I think it worked like a charm…

Luka is lying her right now moaning.. so hard, I can’t really go itch what he want’s itched, I don’t want to break it open again.  =(  Heartbreaking..

He does have a guest right now.  Our dog sitting guest is back.  She’s doing great!  they play a little but mostly she just follows someone around… whomever is moving, she is hot on their heels.  Drives Jason a little batty, but hey.  It is all good!  He loves giving her attention too.

Oh, and the migraine I had last night I got rid of before I woke.  This is the SECOND time that this has worked.  Usually the meds don’t work for me overnight.  I tried a new combination.  LOVE this!  Fingers crossed that it continues to do the trick!!  WooT Woo!!

I am enjoying my new to me computer and my good internet.  NICE!! 

Hope you are having a good day too!!

Pink Doberman

ViSiOn CaStiNG

You know you are doing the right thing when waves of enthusiasm sweep over you.  You stay awake at night dreaming of the possibilities the potentials and the vision you are creating for yourself.

I finally feel as if I am on the right path.  It is a path to some degree that I began 20 years ago.  I am finding myself again.  I am creating a dream for myself.  Then I will be setting some goals for myself to put into my reality.

In my case this has been difficult.  I am capable of many things.  The draw back lies in the fact that while I am capable of doing many things, I need to be able to do them in my time frame not in someone else’s.  I need to be able to take out time for what my health needs are both physically and mentally. 

I am finally working out ways of making these things happen.  I am finally seeing a light. 

I wanted to post, this since I have been so bad lately it seems all I do is write posts about how I am not posting much.  I am glad to not be posting much.  I like posting, and sharing.  I am sure I will be back to doing it more regularly once I get this all figured out, but right now most of my energy is going toward getting my vision for myself set up. 

I am not going to say more because I’d like you to enjoy the surprise I am planning.  I will post in between now and when I am ready to go. 

I am working with what I am able to do, which makes me happy.  I am finding others to help me with what I am not able to do which makes me nervous, but also happy.  Additionally I have a project that I’ve not gotten done for someone else that I need to get done. 

So I will be making a very cute set of curtains here soon.  At least that is the plan.  Still not sure when I am going to get my own curtains made.  Jason asked me that the other day.  I said I needed help getting them cut out as they are so big and slippery.  I asked if he’d be willing to help me.  He said YES.  So I may be getting that project done as well before I start on this other plan. 

Oh, I am currently glasses free.  They are helping.  I don’t know whether or not I will get a fourth set of lenses or what comes next but when I see the Dr. I will know. 

That is a whole nother set of things I have been putting off.  Dr visits.  I don’t ever want to go see another one.  But, I’ve got a mamogram, dexa scan, regular check up, another check up, eye check up, and probably something else I am not thinking of right now to get done.  I like my Dr’s don’t get me wrong.  I just would rather never see them professionally again. 

Oh, and we are starting back at the gym next week.  At least that is the plan.  Thanks to Groupon, we got a great deal for three months.  I can get back in the pool for pool therapy!  Yipee, and one of my neighbors is going to drive me!  YEA! 

We have also been scouring Craigslist.  We found a recumbent bike for $50!!  A nice one that works… the seat was a little ripped up but I patched it with my Sugru and we are now in business.  I love it.  I’ve been riding it every morning for 10 minutes and every night for 10 minutes.  It has been awesome!  Now I need to find a good treadmill for not to much money that I can use at home.  We’d gotten one in the past but it is broken and we don’t know how to fix it.  So we are searching again. 

The snow has officially arrived in Nebraska.  Piles of huge fluffy flakes have whitened up the state.  It looks beautiful I have to say.  Jason is going to have some fun with the shovel and our neighbors snow blower I think.  The birds have been flocking to my feeders like crazy.  I am loving their visits. 

Luka is doing well.  He’s been having a few issues lately with missing boots, throwing up and a little diarrhea so he hasn’t been going out with us as much.  Besides I haven’t gone anywhere by myself in ages, Jason does a good job of giving me support and so do my friends.  I just miss my independence.  Hopefully with my glasses having a better effect, and my getting stronger, I can do more on my own.  Just keeping him for places with stairs or that I know I will be getting up and down a lot.  We’ll see. 

We’ve decided I think that I won’t be venturing outside this winter on ice much at all.  Don’t need a fall to make things difficult.  So I’ll be using my disability tag in the car at the gym to get closer parking so I don’t fall, and so I can make it back to the car after exercising.   Besides the cold seems to do nasty things to me any more.  Good thing I am a former farm girl and know how to pack on the layers.  I do think a nice pair of toasty warm snow pants is in order though.  I used to have some that would probably fit me now, but I think they may be long gone.  Besides they weren’t the warm kind, just the waterproof kind. 

Might be something to think about.  I am getting goggles ordered for swimming and a swim cap too.  Hope those things will make my experience nicer in the pool. 

I am getting things set up again finally.  I am so looking forward to spring, when I am planning to get started walking outside again.  I do like having the indoor bike.  I find that many times I exercise at 11 or after midnight.  I am strange.  I know.  But it works for me, and there is no way I’d be venturing outside for a walk at those hours no matter how nice it was outside. 

Dreaming on..

Blessings,

Pink Doberman

Dreaming of sunny warm weather when everything is green!