Sunday, November 20, 2011

Friends... or not

I have learned a lot about friends over the last couple of years since I first got sick.  I have also learned a lot about myself.  I've never been one to have a lot of friends.  I'd rather have just a couple real good friends than to have a lot of not so good friends.

I have really struggled with friends over the last couple of years.  I've lost friends (or people I thought were friends).  I've gained friends and then lost them again.  And I've gained friends who I hope will become better friends over the years.

Friendships are so hard when you have a chronic illness.  First of all, I'm a different person than I used to be.  My self-esteem is a lot different than it used to be.  I've never been one to have an extremely high self esteem.  So the fact that it's been even lower since I've been sick has not been good.  I'm a lot more selfish than I used to be.  And I'm a lot more needy than I used to be.  Surprisingly to some, I am aware of both of those things. All of those qualities have made friendships difficult.  I know that.

I do tend to fault others a lot for my friendships failing.  However, a lot of it is my fault.  I expect a lot more out of my friends than I used to.  But, then again, I need a lot in this phase of my life.

Prior to getting sick, I was able to take care of myself physically, and most of the time, emotionally.  But the emotional toll my life had on me was no greater than most others.  I never needed someone to help me get to a doctor's appointment.  Of course, I never went to the doctor either.  I never needed someone to help me fix my meals, take care of my kids, etc.  Now I do.  And I rely on my friends sometimes to help me with those things.  My friends have their own families and lives to take care of.  They don't need to deal with taking care of mine as well.  That, then, leads to guilt.  I still struggle with guilt a lot.  That, I'm sure, has an effect on my friendships.

I also need a lot more emotional support than I used to.  Feeling like shit 24/7 takes a toll on a person.  That, of course, reflects back to my friends.  And with feeling awful all the time, I, then, end up complaining every now and then.  I really do try hard not to, but when your whole life revolves around the way you feel, it's so hard to not complain every once and a while.  It's also hard to lie all the time.  I do try though, because I wouldn't want to listen to someone complain all the time.  No matter how good of a friend they were.

I need a lot of support in other ways as well.  For instance, in the last 6 months there have been 2 fundraisers I've been involved in.  One of which was held by me, for me.  The other was to raise money for the disease that has changed my life so drastically and makes me feel like crap all day, every day.  Both of these things were VERY important to me.  Here we go back to how I expect a lot out of my friends.  If something is important to me, I would expect it to be important to my friends and family.  Therefore, if these two events were not important to someone in any way, then they must not be much of a friend.

I need a lot of understanding.  I may not always feel like talking on the phone when a friend calls.  It's nothing personal.  Then again, I would be sad if my friend(s) didn't call me but once a month or two.  I don't have the energy, or feel well enough to be able to go out to meet my friends.  I can't do the same thing with my friends that I used to be able to do.  All of this requires patience and understanding from my friends.

I know I am not the best friend a friend can have, but I do try.  I try to listen.  I try to be there for my friends when they need me.  I am always available to be a listening ear and/or a shoulder to cry on.  I may not be as fun as I used to be, but I try.  I try to let go of my pain, fatigue, and nausea when I'm with my friends so I can be a friend, not just a sick person.  I try not to ask too much of my friends so they remain my friends and not my helper/caretaker.  I do try to be a good friend.

With all of this being said, I don't know what to do anymore.  There are friendships that are hanging on by a thread.  I feel as though I'm the only one putting forth the effort to keep it alive, even if it's not much.  In fact, since I started writing this post a month ago, I have kind of given up.  With as sick as I have been feeling recently, I don't feel like I have the energy to make it work anymore.  Then again, part of me wondered if I disappeared, would it be noticed?  Well, I'm leaning towards "no".

Part of me understands; part of me doesn't.  Would I want to be friends with me?  I suppose the answer is "it depends".  It depends on how close the friendship was prior to me getting sick.  I probably wouldn't really want to be friends with me right now.  However, if the friendship was strong prior to the drastic changes in my life, I think I would do whatever I could to keep the friendship strong.  Then again, you never know what you would do until you're in that situation.

Maybe it's all just hopes and dreams.  I just wish that someone would still want to be my friend despite all the changes I've gone through.  I just dream of having a friend(s) that would go out of their way to help me through this shit that is my life.  I see/hear stories of people going through what I'm going through with friends or siblings who go out of their way to raise money for a cure, keep them company because they're housebound, or just generally make them feel loved.  Unfortunately, I'm not one of those people.

I have to ask for anything I need or want.  Whether it's help with anything from a cooked meal to chores around the house, help raising money for a fundraiser/charity that means a lot to me, or just a friend to talk to and laugh with.  Recently I have given up.  If someone truly loves me, they'll still be there, whether I ask or not.

Unfortunately, I see some friendships fading away.  Friendships that I thought meant a lot.  I know, friendships come and go throughout life.  However, Sometimes you have friends who you think are special and will be there for a long time, no matter what.  Friends who you think will be there for you no matter what.  Friends who you think will still be there, even if (and especially when) your whole world has turned upside down and you're not the same person you used to be.  It's when those friendships fade that you feel like you have lost something/someone truly special in your life.  I suppose it's just one more thing for me to grieve that I have lost from my "other" life.

I miss friends... not just my friends, but friends.  As I get more ill, I need friends to cheer me up, make me laugh, give me a shoulder to cry on, or just to let me know that I'm going through this alone.

I will get through this... just as I get through everything else.

A few quotes about friendship...

"The most I can do for my friend is simply be his friend."  - Henry David Thoreau

"The real test of friendship is: Can you literally do nothing with the other person?  Can you enjoy those moments of life that are utterly simple?"  -Eugene Kennedy

"True friends stab you in the front."  -Oscar Wilde   (LOVE this quote.  I have always said that I would much rather have someone tell me that I'm a bitch to my face than behind my back.  Then again, those people are hard to come by.)

"When a friend is in trouble, don't annoy him by asking if there is anything you can do.  Think up something appropriate and do it."  -Edward W. Howe  (I swear this didn't just come from me.)

"Sometimes you put walls up not to keep people out, but to see who cares enough to break them down."  -unknown

"Most of us don't need a psychiatric therapist as much as a friend to be silly with." -Robert Brault

"True friendship isn't about being there when it's convenient; it's about being there when it's not."  - unknown

"A friend is the one who comes in when the whole world has gone out." -Grace Pulpit

"When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.  The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."  -Henri Nouwen

"I miss friends.. not just my friends, but friends."  -Robin J.

The good news, and the bad

Last week I started up with palliative care.  Palliative care is basically a service that helps people with serious chronic illnesses.  They give me access to a nurse, nurse practitioner, physical therapist, social worker, and more and they will all visit me at my house.  As I have become more sick over the last couple of months, especially over the last month, this will help me a lot.  They will be able to help me with my GI problems more than anything.  They help with pain too, but my pain doc has been wonderful with that.

Over the last few weeks/month I have been tolerating less and less activity.  Very little activity wears me out completely.  I get sweaty and hot, nauseous, extremely fatigued, dizzy, and I get a horrible headache.  This has been happening with less and less activity recently.  I don't know if it's because I'm not eating and drinking enough due to my GI motility issues or just because my disease is progressing.

Last week I needed to visit Hobby Lobby to get a few things.  I enjoy going by myself and being able to take my time to pick out the things I need for my "creations".  So, I went, by myself, but I took my electric wheelchair, of course.  I wouldn't get far without that.  I browsed through the store for about an hour.  When I left there I was feeling pretty ill.  Basically feeling all of the things I stated above.  However, I thought I could just come home, take a nap, and I'd feel better.  Well, I came home, took a nap, and felt worse.  I ended up vomiting and unable to keep anything down for 16+ hours.  I barely slept that night due to a horrible headache.  I was sick the whole next day as well, but luckily I was able to keep some fluids down starting the second half of the day.

What I have figured out, through talking to others and my own presumptions, is that my dysautonomia is causing my autonomic nervous system to go haywire after too much activity.  I am, therefore, really sick for 24 hours.  That is why the Zofran I take for nausea doesn't do anything at all when I'm going through those vomiting spells.  I have been having this problem more and more recently when I do much activity at all.

This is a bit depressing to me because, as they say, if it hurts, don't do it.  Well, if activity makes me sick, I shouldn't do it.  Right?  Well, that f'n sucks!  An hour out of the stinking house makes me sick?  Great.  So now I'm completely house bound?  Well, anyone who knows me knows that that's the death of me.  Being practically bed/couch ridden due to this disease has been hard enough as it is.  I already hardly left the house because I couldn't tolerate it.  Well, I could always just push through it.  The more I would push through activity before, the more I would just have to rest afterwards.  Now, the more I push through activity, the sicker I will make myself.  That won't work.

Due to my extremely slow GI motility, I'm unable to drink or eat much at all.  I'm only getting about 750ml of fluids down a day, at the most.  That's the equivalent of about 3 eight ounce glasses.  With dysautonomia, I should be drinking a bare minimum of 8 eight ounce glasses of fluids a day, but probably closer to 12 eight ounce glasses.  In addition to that, I couldn't tell you how many calories I'm getting per day, but it's not much. Many days I live off of vanilla pudding and lime sherbet.  Mmmm!

The good thing is, if I get really sick like I did earlier this week, I now have a home health nurse to call instead of having to go to the ER.  If I get too dehydrated, they should be able to give me IV fluids at home too.

So... bad news - I'm still getting worse.
good news - palliative care should hopefully help

Until next time...

Monday, November 14, 2011

Jewelry and Hair Bows

If you haven't already, check out my shop, DK Jewelry and Designs.

Here are just a few of the products available...

Tuesday, November 8, 2011

DK Jewelry & Designs

DK Jewelry and Designs is open for business.

Prior to the Energy for Life Walkathon in September 2011, I had decided to reward the top two fundraisers on my team with a gift.  That gift was a Mitochondrial Disease Awareness bracelet made by yours truly.  I enjoyed making those two bracelets and received so many compliments that I decided to continue making them and selling them.  I have also been making hair bows for my 5 year old daughter in the last few months that have received compliments as well.  Therefore, DK Jewelry and Designs was born.

Please take a few minutes to visit my online store.  If you don't see anything that fits your taste exactly, please visit again soon.  All of my designs are created individually and each one will be different.  I will be listing new bows and jewelry on a regular basis, so come back often.

I will be featuring many different designs in my store, including Mitochondrial Disease Awarenss jewelry and bows.  Twenty percent of the proceeds from each Mitochondrial Disease Awareness item sold will be donated to the UMDF (United Mitochondrial Disease Foundation).  However, please keep in mind that the proceeds from every item sold will go toward the medical bills of a patient with Mitochondrial Disease.  ;-)

Please tell all of your family and friends.  After all, the best way to gain customers for a new business is through networking.

Online store -

http://www.etsy.com/shop/DKJewelryAndDesigns

Facebook page - Please take a moment to "Like" my page

DK Jewelry & Designs on Facebook

I can't think of a creative title, so I won't, so this post won't have a title.

So it's been about a week since I've posted.  I think I'm due.  I don't have a TON of stuff to say for a change.
I know, I know.  You don't believe it.  Well, believe it.  Actually, you can believe it when you get to the end of this post depending on how long it ends up being.

I actually had a decent day today.  I am learning more and more how to deal with my GI problems.  I have officially abandoned mealtimes.  Well, actually, I have decided to listen to my body instead of the clock, mealtimes, or when others are eating.  This is going to be a work in progress.  After approximately 29 years (yes, you read that right) of eating based on one of those 3 reasons, it'll be difficult to change.

I have, for the last couple of years, had to make sure that I'm eating on a regular basis because if I waited too long, and my stomach got too empty, I would get very nauseous.  Now that my GI system has slowed down to a snails pace, I don't have to worry about that too much anymore.  That gives me an idea...  Maybe I should eat a live snail at the same time as some corn and see which one comes out faster.  Hmmm...  Nah!

So I sent the hubby to the store a couple of nights ago to get a few things... fudge bars, jello, pudding, popsicles, sherbet, etc.  I have given up on trying to eat what everyone else is eating and/or what I think I should eat, and then just vomiting it up later (or laying in bed feeling like I'm going to for 3 hours).  So, instead, I'm going to eat something light when I feel like eating.

I'm still not getting enough liquids throughout the day.  Water makes me nauseous.  I have switched to lemonade because having something with a taste to it helps a little.

Last week someone recommended to me that I try to get palliative care.  So, I called someone at KC Hospice and Palliative care.  I was very happy after I spoke with someone there at the beginning of the week because it actually seemed promising that I would qualify for some help and that what they would do would really be helpful for me.  However, right before my meeting with the nurse, they realized that I didn't want hospice.  !!!!  WTH!?!?!  Of course not!  She either didn't listen to me at all, or she mixed me up with a different patient.  That got worked out and they sent a palliative care nurse out to see if I qualify instead of a hospice nurse.  However, when she got here, I learned that in order to qualify for palliative care, I need to have a need for a registered nurse (i.e. a catheter, surgical incision that needs dressing changes, IV fluids, etc.).  I explained to her that I was wanting help navigating the system, especially to help me obtain IV fluids through home health on a regular basis.  But, since I don't already have them, I don't qualify.  I really think a lot of time could have been saved if two things would have happened.  1. The person I talked to on the phone would have listened to my situation better, and/or taken better notes. And 2. She would have told me over the phone that I need to have a need for a home health RN before I would qualify for palliative care.

Ahhhhh.... I just LOVE being on this side of the medical field.  And now, all the way from the nineties....   NOT!!!!

And since I'm in a good mood...

Thursday, November 3, 2011

The Place I'm In

I am not in a good place right now.  I was just getting settled in to my new life.  I was just starting to figure out how to live my daily life with the way I always feel.  I was figuring out the fatigue, the pain, the weakness, the depression.

Is there something wrong with figuring things out?  There must be, because whenever I do, things change.  I know.  I know.  That's life.  But can't I have just a little bit of normalcy?  Even if it is just my own normalcy.

I had figured out how much sleep I needed every night, how much activity I could handle before I needed to rest, and how much rest I needed before I could have activity again.  I finally figured out the right pain meds and dosage, how to best deal with my pain, and what I needed to do to keep it tolerable.  I figured out what I needed to use to keep me from getting too weak or to get around when I am weak.  I finally figured out how to keep my depression at bay.

So right when I might actually get to enjoy life a little, my body decided it wasn't going to have that.  My GI problems have kicked me in the ass.  No pun intended.  I have been so nauseous.  I can't eat.  I can't drink.  I can't enjoy a good meal like I used to do when I was feeling bad.  Nope.  I can't, because my GI system decided to go on strike.

I've had enough of this shit.  Things could be worse, you say?  Yeah.. I know... I know.  I really don't want to hear it.

I finally went to the ER yesterday.  After being incapacitated from headache/migraine pain and nausea all day on Tuesday and then waking up feeling worse on Wednesday, I finally decided to do something about it.  I was so weak yesterday that I was barely able to get up and around to go to the bathroom.  I figured it was because I was so dehydrated.  I got 2 liters of IV fluids while in the ER.  It did help my headache.  It's still there, but I am able to function now.  (btw.. migraine meds did not touch it like they normally do.)  It did help my weakness and fatigue.  It's still there, and worse than normal, but better than it was Tues. and Wed.  I'm not getting around much without my wheelchair, even in the house.  Normally I will walk around a bit in the house throughout the day.  Problem is, in another week I'll be right back where I was.  I just can't drink or eat enough each day to keep my head above water.

You know, I knew Mitochondrial Disease was a progressive condition.  However, I guess I didn't think I was going to ever get worse.  I had come to terms with the fact that my life had changed drastically and I wouldn't be able to do the things I used to do, but I obviously didn't come to terms with the fact that I may still get worse as time went on.

Isn't what I was dealing with enough?  Do more symptoms/problems really have to arise?

In addition to the physical symptoms, I am feeling a bit down that I'm not really feeling the love from friends and some family.  I really need support right now and some people were blowing off my visit to the ER like it was a visit to walmart.  I wouldn't go to the ER unless I was really sick.  But I guess this is just my life and me going to the ER is like everyone else going to walmart.

Another thing... how is it that I feel so incredibly bad but all of my tests always come back normal?

You know.  All I really need is to feel better.  To be able to eat a freaking meal, or drink a few sips of water for that matter, without feeling like I'm going to lose it before I'm finished.

I'm so tired of feeling sick all the time.  I'm tired of acting like I don't.  I'm tired of fighting.  Sometimes I just want to give up.