Out with the sick...

We have a few friends coming over tonight, nothing big as I am still not feeling 100%. 2014 started off rough and is ending rough, and I am hoping this new year is different!!

January started off good, my best friend was expecting her first child and February 7th Caroline Rose was born. Also in Feb my friends Scott and Mary announced that they were having a baby and my daughter was accepted into the Art Institute of Pittsburgh! The cold brought a rough time with pain, but I got through it. April 14th I turned 37 years old, and in May my daughter attended her Senior prom. I got to spend Mothers Day with my daughter and my best friend and her daughter, we went to the Mothers day service at church. That afternoon my husband and daughter took me to the zoo! Also in June my daughter and her best friend graduated from High School and I got to spend most mornings on my porch watching the birds. My daughter turned 18 and my husband and I celebrated being married for 16 years! We got to spend another vacation in Duck, NC; we ended up going with some good friends and having a wonderful time. Mary and Scott had the baby, Seth Gary, and then in October my baby moved away. In November we lost our dog Snoop, she was a great dog and I greatly missed. Also in November I got sick and was sick through Thanksgiving. I started to get well, only to get sick with in a few days.

2015 is another year to make some GREAT memories. I hope to spend more time with my family and friends.


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Ready or not its Christmas time!

Ever since my Grandmother died I have had a difficult time getting into the Christmas spirit. I really try but it is always hard. I’m not sure if it is because she is not here or if it is because when she was gone my whole world changed, my focus shifted. I wanted to be like her, to be the one who helped everyone who needed it. Because I’m disabled – I live on a budget, I don’t have the strength or energy to see my family and friends as often, and I have learned the hard way that I cannot help everyone.

This year Christmas seems to be approaching so quickly that I don’t feel I’m ready! Not to mention my budget sure isn’t ready either. I’m Catholic, so Christmas has a deep meaning for me and my family that goes beyond presents. It is difficult though when you really want to give to others. Luckily my daughter will be home for a while so my husband and I have a month. Haha

I have been sick; I’m still working on getting better. My voice comes back, but not for long. I finally have energy to get Christmas cards out. Maybe.

Over the weekend, the cemetery had a candle vigil for the holidays and my husband and I went. It was beautiful and we loved it. I took a lighter and relit a few candles that had blown out, we were both cold but it was totally worth it!

Time

I have been sick now for 22 days. Curious about what took me down? Not the flu, but a cold. The flu would have been disastrous. This was still rough, it still is. My husband was afraid to leave me to go to work, and when he did go he made sure someone was taking care of me. I spent a few days in the hospital, but left because they were doing nothing. They didn’t change any of my meds, they didn’t start any new meds, I had to ASK for CPT (!!!), the doctor didn’t even introduce himself, and they didn’t even figure out what is wrong!

Well, to be fair they gave me IV fluids and oxygen.

I saw my primary; she said it was probably a little cold that my body just couldn’t fight off. A little cold, she said! Something that took others 2 or 3 days to get over has been the bane of my existence for the last 22 days. Sometimes I forget I’m sick, forget that my life is not what it was. I am not feeling sorry for myself or looking for pity, I love my life. I love where I am and who I am surrounded by; my health is just a small facet of my life. So when I complain about it, it isn’t because I’m miserable but rather because some days it pulls my focus. I can’t think of anything else. I worry about things that I’m sure a lot of people my age don’t think about.

Because I consider life and death on almost a daily basis, I realize how much I love the people in my life. The ones who take care of me, the ones who offer to help, even those who put their heads in the sand. My life is not for the faint at heart, it’s not for the weak, and the people who have stuck around have shown me strength and love.
I appreciate them, I appreciate every second I have with them.

Time is precious.

Our time is finite.

Make your time matter.

Even if it is just helping your neighbor, or being a role model for the kid next door.

Do something guys.

Don’t wait. Do it now.

The college life?

The beginning of this month we dropped my daughter off at college. This has proved to be more of a challenge than I thought. You see my daughter; husband and I are very close. We get told often that we aren’t normal. I suppose this connection the 3 of us seem to have can be explained by a few defining experiences.

1. Kate came to live with us when she was 1. At that time we were on good terms with her birthmother, and everything went smooth. Soon though everything changed. Her birth mother started to cancel visits for ridiculous reasons. Her car broke down once a month, working overtime (but she never had any money), she couldn’t afford gas (but she was working overtime?) and a hysterectomy (twice). Often she would call the day before or the day of; a few times she would call hours after she was supposed to pick up my daughter after we had called to make sure she was OK. Long story short she picked up Kate and ran off with her. She had her 3 kids with her and no job, no permanent residence, and she refused to call us. We got a lawyer and fought to get Kate home. We won, the state awarded us child support, and the birthmother had visitation. Well, she could have had visitation but she continued canceling (not every time, but it was frequent). She ended up moving and not telling us anything, other than telling me she had fibromyalgia and could not pick Kate up anymore. Flash forward I adopted Kate when she was 16. She did not like being too far from home after that, and we weren’t crazy about it either!

2. My health. When Kate was younger she and I were almost always together (I did home daycare) and she even went to doctors appointments with me. I was diagnosed with both diseases at 21, so she grew up knowing I was sick. Our family has no secrets. When she started in middle school the progression of my Mitochondrial disease changed. Before it had been minor issues, now working was getting more difficult. Within 3 years I had to stop working and apply for disability. My husband and Kate had to start doing the house work, they split it up. I am not exaggerating but Kate, never once complained.

3. It has always been the 3 of us against the world. Our families and friends are a great support, but no one truly understands our struggles as a family (health, financial, and personal).

I really want her dreams to come true and for all that good karma to come back to her tenfold. So while I miss her, I am excited she has started this next phase in her life.

I need new batteries...

Saturday we went to register my daughter for college classes. We got notice about the registration on Wednesday, luckily we were able to make it there (it's 4 hours away). It ended up an error, so we decided to explore the city instead. It was a good day, all in all. Sunday and Monday also went well although I was sore and really tired.

Some days I wake up feeling good, which for me means just a little fatigue. I have some level of it every day, and some days more than others. Just last week I was lucky enough to have two days in a row with energy. Last Monday I woke up with stiff joints, which sucked because it was a beautiful day out. At least it looked like it from my window. I really wanted to go out but I was too tired and had to save energy so that I could o to the grocery store. Luckily my daughter went with me, but the floor was killer on my hips and legs. Last Tuesday I had IVS and just couldn’t get myself moving but Wednesday I woke up with more energy than usual and it happened again on Thursday and Friday.

So it really does change every day, and I have no control over it. I have tried to rest up for activities, but that did not work out as I had hoped. I try to RSVP for things, but I still end up missing some of those things. Some people get upset over it (I do too) and I have friends that do not invite me places because I have canceled on the too much. It hurts my feelings but I have to remind myself that they don’t know what I deal with and no matter how hard I try to explain it, they will most likely never understand. But I’m glad they will never have to.


It’s tough for me to remember life before the pain, before the fatigue. It’s like a haze that surrounds me, every day I have a choice. I can look to the past or look to the future; I chose the future. Occasionally the past comes calling and I have a down day, I’d be lying if I said I always look on the bright side. I try to I have another blog called “The Bright Side” and a facebook page too, I’m hoping that by reminding myself to be thankful, I will be reminding others. Yeah I know I’m one of those dippy hippies. LOL

My life is unpredictable, and I have less stress about it since I accepted it. It took me a while and I still lapse every now and then; but life goes on.

Weight loss with Mito and CF

I have decided to be more diligent with my blogging, or at least I am going to try to be. I should post more often to raise awareness on issues near and dear to my heart.

This week is mitochondrial disease awareness week and I have been flooding my page with tid bits about having a mitochondrial disease. I have two genetic diseases both are progressive and neither have a cure. Both are/have been considered childhood diseases. (Cystic Fibrosis and Mitochondrial Disease) Obviously since I am 37 they are not. I was sick a lot as a kid, and was labeled fat and lazy. So when I turned 21 and they diagnosed me I was so happy to know why I was fat and lazy (and sick).

The problem?

I can’t change the fat or lazy part. Because of my Mito I don’t absorb vitamins and minerals correctly, and my CF totally compounds this issue. I take enzymes when I eat, avoid milk products (except for cheese, I LOVE cheese), take vitamin supplements, I get vitamins and minerals twice a week. I am still low. The past few months I have really been struggling with carotene, vitamin A and D. They are just consistently low all of the time it seems. At IVs I get blood work every week to monitor my levels. My cholesterol is really low too, but that is nothing new either. You would think that I would be losing weight through all this, but I’m not. I have been around the same weight for years, it seems. The mito causes me to have muscle cramping, nerve and joint pain; so exercising is not an option for me. I’d like to try to get to the pool more often but the Y costs money and I just don’t have that right now. Plus I eat whatever I crave, my doctors told me to; the thought process is that if I crave it my body needs it. My CF doc is happy with my weight and my mito doc hasn’t said anything about it, so I assume it’s a non issue for them. It is something I think about often though. Some days I am so bloated none of my clothing looks right and some days everything is a size too big, and my pants just fall right off. I exercise when I can but honestly, that is not often and not on a regular basis. I try to not focus on it, but it is hard. I used to go on all sorts of crash diets as a teen t try to fit in, but when y daughter was born everything changed. No more crash diets. I eat healthy, but sometimes I over eat the healthy stuff and without exercise I can’t lose. But I have learned to be happy in my own skin, plus being “chubby” seems to work for my health right now.

Both my illnesses have shaped my personality and me physically. They have both left a permanent mark, like a tattoo, on my soul. It will never go away, and I am ok with that.


For more info on Mitochondrial Disease go to UMDF.og

For more info on Cystic Fibrosis got to CFF.org

Awareness

This week is Mitochondrial Disease awareness week (September 14 – 20) and I am always thinking of ways to spread awareness about both of my diseases, Cystic Fibrosis and Mito. Ironically my Mito is the only hurdle in doing so. I can no long participate in Great Strides (CF walk), I can still sponsor someone but I used to participate in 1 walk for years and for those last 3 years I did 2. Cystic Fibrosis previously was thought to be a childhood disease, Mito still is talked about as a childhood disease but they are learning more and more about adult onset.

I try to post on social media to spread awareness, and I have this blog but I can’t help but feel like I am not doing enough. Then again that is a common theme in my adult life. I never feel like I am doing enough. I should be doing more to raise awareness. I should be doing more around the house. I should be doing more to help my family. I should be doing more to see my family. The list goes on and on, but I’m no whiner so I’ll stop there.

To learn more about Mitochondrial Disease go to umdf.org

Getting them to narrow my specific Mito down is like pulling teeth, every visit I’d ask and every visit I would get the same answer. “You have two mutations never seen before. We cannot classify them easily and we have no other to compare it to. We don’t really know what other symptoms will develop, but we do know the ones you have will progress.” It is a nightmare, and to get any answer I have to break down in front of the right person. I broke down at many of my Mito appointments, and they felt bad; I think, but no one would budge. No false hope and all that jazz, they wanted to be sure. In an article written about me they say “a woman who has been suspected of mitochondrial Cytopathy”, while at another appointment another doc said they thought it was a Myopathy. (Am J Med Genet. 2002 Nov 15;113(1):59-64)
I’m still waiting.

To learn more about Cystic Fibrosis go to cff.org

I was diagnosed at 21 which is when he figured out that I had Mito too. I have lived with the knowledge of both, but because they weren’t sure about the Mitochondrial Disease I focused on my CF. Tried to learn as much about it as I can, I’m no expert but I do know what it is and what it does, and more importantly what it will do. I ignored my Mito until my symptoms had progressed and I was unable to sit at work or walk across a parking lot. I fought hard or disability and was denied twice. Finally I had to go in, that day I was not moving well at all. I had my wheel chair for the long walk into the court house, but I walked into the court room. It was slow and agonizing but I wanted these people to see me. Not just the label of Mito, but me and what it was doing to my body. Finally this judge saw *ME*.


Now I live in a two story home with my husband and daughter. They do the housework and cooking. I pitch in when I can, which is not often. Most days I sit by my window and watch the birds outside, my dogs keep me company as I spend my time on the internet, reading, watching TV, or playing a video game. When the pain is bad I do more than one, in an attempt to keep myself occupied with other things. My therapist called this a distraction method and said it was common with chronic pain sufferers.

Please educate yourself on Mitochondrial Disease and Cystic Fibrosis, both diseases need a cure. Not because I have them, but because I know, first hand, what they are capable of doing to people.

Clinic + Duck = AWESOME

I literally rolled out of bed; thankfully my legs were working this morning. I even took a shower by myself! It’s the little things. It was a very easy morning which was nice to not be stressing the appointment or the drive. Traffic was good, a little slow, but the idiot drivers weren’t out this morning. All in all it was a nice drive, and I got to spend time with my hubby so it was great. Security was busy though, but they got us through as quickly as they could. I was a little late for my PFTs but since I have a buffer between my appointments I was on time to see Dr. C.

I forgot my last PFT in February, so this whole time I’ve been thinking last October was my last PFT. So in October my FEV1 was 73%, in February it was 70%, and today was 70% too. There was a small drop in some other spots, not significant (according to Dr. C.). We discussed my new issues, drops in blood sugar, seizures, the blurry vision, etc. Nothing to report though, she said she thinks the seizures are mito related and she doesn’t seem to concerned about the sugar levels (although we have to watch them now), and the blurry vision is due to a blocked duct between my sinuses and nose. So yeah…everything went well. She is mailing my medicine, so we got home earlier than usual so we’ve been able to get some things done around the house.

Vacation is 10 days! We’re going to Duck, it is our favorite vacation spot. There is a lot to work on before we go, admittedly I'm not doing a lot but I'm getting small things done though. I'm just so excited to go, and we've got good friends going too, so it's going to be AWESOME.

Easy

Sitting here and listening to the click and wer of an IV machine as I’m getting my treatments today. This morning was rough, not complaining but being truthful. I know some people have it worse than I do and I am grateful that I have as many good days as I do. The nursing staff here at the IV center are always nice to me, so I don’t mind spending 3 ½ - 4 hours a day here. Earlier this year my treatments were an all day kind of thing.
It takes a lot to get up and get ready to go out. Even on a good day I have to take breaks so that I can rest. It takes me no less than an hour to get dressed, not including the time it takes to brush my hair and teeth. Some days I have to ask my husband or daughter to brush my hair. I am unable to shower as often as I’d like. Not that anyone complains about it, but it makes me very self conscious. This week I pushed myself to attend a family event, because that is what you do for family.

You show up.

I was happy to be able to see them, and even saw family that I don’t see often. I wish I had more time with my family and friends; I spend most days on my sofa. When I wake up I usually come down stairs wearing what I wore to bed, or I manage to put on something easy. Once I get down stairs I sit down and start with my morning meds. I might be able to get up and get myself breakfast, often it’s a push to walk out to the kitchen so I just grab something easy and get back to the sofa. I take a few more meds, eat and then take the rest. Usually my husband or my daughter has made lunch for me; something I can grab out of the fridge. Again it is something easy. My life has become easy. It took the deterioration of my muscles and the progression of my disease to show me that life did not need to be hard. It doesn’t need to be full of drama or negativity.

Everyone, sick or not, wakes up in the morning with a choice. Easy or hard? Go with the flow and relax, or stress out and try to change what can’t be changed (fix what can’t be fixed). I don’t know if there is a right or wrong choice, I think everyone is different. But for me, right now I want things to be as easy as possible.

Rough day

I finally made my next CF clinic visit, and yes I know it is long over do. I was supposed to go in February but I never made the appointment. Life got crazy. Last visit I was at 74% so I am curious to see where I’m at right now.


Today was a rough day. Despite my medicines my pain just got the best of me today, and honestly this is the second day this week where I was absolutely exhausted. I have my ups and downs throughout every day. Some days my pain gets to a 10 some days it is as low as a 3. My fatigue works the same way. Today was easily a 9 for pain; fatigue was a tad better – 7ish. Doesn’t really help my mood at all. I have been snapping at people left and right. I’m on edge, and when I’m not I’m depressed.


It is so frustrating to only be comfortable for a short time and then feel like bugs are crawling on my legs or even wore the burning. My husband and daughter see me struggle with this often, and I am ashamed that I cannot hide it very well anymore. But that’s just my own insecurities. I’ll dig myself out of this funk…

College

I apologize for my lack of postings lately! My daughter is graduating and has been accepted to the Art Institute of Pittsburgh! I am so proud! She is an amazing young woman, and she deserves the opportunity to follow her dreams.

Senior year is hard. I know it has been tough on Kate, but man, it's been tough on my husband and I also. Not only is the fact that she is leaving tough, but we have been trying to help her pull everything together but we are attempting to fill our last summer together with fun times and memories!

Some of you might not understand the close relationship my husband and I have with Kate. It has always been the three of us against the world. We've had each others backs and those thing are not going to change. When Kate was younger her birthmother picked her up and did not bring her home. This was right before her 3rd birthday, and we fought to get her home. With out making this a long a drawn out story - she came home and the three of us have a bond now that I am not sure others full comprehend. We tell each other everything, there are no secrets between the 3 of us, we take care of each other and have been through a lot of crap and have come out stronger for it.

We get the, "been there done that", "as soon as mine is 18 she/he is outta here", or a look of shock. Having two genetic, progressive diseases (neither with a cure) helped us build a very strong foundation add to that the struggles caused by her birthmother and my husbands struggles with his own health and it is unshakable.

She won a scholarship, which is going to help out a lot, but we still have a lot of costs to cover. I created a page, http://www.gofundme.com/79ih34, in hopes to raise some more money for her to start classes and buy materials. Please visit and read her story and her progress so far. Donate if you can, please. She is a generous person with a great heart with an old soul, she makes the honor roll with distinction every term, she has a great sense of humor and she takes care of her family.

Rare Disease Day

February 28, 2014 is Rare Disease Day! One in ten Americans live with a rare disease, and it's time we raise awareness for ALL of the rare diseases out there. Do you know about a rare disease? Spread the word make a post on your blog, Facebook, tweet about it - be annoying and LOUD! Make it so people have no choice but to listen to you!!!

Cystic Fibrosis is a rare disease, listed on NORD (National Organization for Rare Diseases).

https://www.rarediseases.org/

They have a list available on the website. According to NORD's page on CF,

"Cystic fibrosis is a genetic disorder that often affects multiple organ systems of the body. Cystic fibrosis is characterized by abnormalities affecting certain glands (exocrine) of the body especially those that produce mucus. Saliva and sweat glands may also be affected. Exocrine glands secrete substances through ducts, either internally (e.g., glands in the lungs)or externally (e.g., sweat glands). In cystic fibrosis, these secretions become
abnormally thick and can clog up vital areas of the body causing inflammation, obstruction and infection. The symptoms of cystic fibrosis can vary greatly in number and severity from one individual to another. Common symptoms include breathing (respiratory) abnormalities including a persistent cough, shortness of breath and lung infections; obstruction of the pancreas, which prevents digestive enzymes from reaching the intestines to help break down food and may result
in poor growth and poor nutrition; and obstruction of the intestines. Cystic fibrosis is slowly progressive and often causes chronic lung damage, which eventually results in life-threatening complications. Because of improved treatments and new treatment options, the outlook and overall quality of life of individuals with cystic fibrosis has improved and nearly 50 percent of individuals with the disorder are adults. Cystic fibrosis is caused by mutations to the cystic fibrosis transmembrane conductance regulator (CFTR) gene and is inherited as an autosomal recessive trait."


I challenge EVERYONE reading this blog to go to their site, and look at their list find something out about rare diseases.

What makes a disease rare?

A disease which affects less than 200,000 people is what constitutes a rare disease in America. The National Institutes of Health says that there are 6,800 of these diseases, which means together they affect approximately 30 million people.

There are pages on Facebook that you can "like" that have info that you can easily share about Rare Disease Day. I'll share a few links below:


What is a rare disease video

https://www.youtube.com/watch?v=MBwCcVGFODs&feature=c4-overview-vl&list=PLMmYBWQscoiFDuDK_G_3dyOsOh_Mu-V8X


What is it like to have a rare disease video
https://www.youtube.com/watch?v=_aMyqn88SEk&list=PLMmYBWQscoiFDuDK_G_3dyOsOh_Mu-V8X


Info
http://rarediseaseday.us/take-action-now/press-kit/


Also on Facebook look up:


Rare Disease Day US - https://www.facebook.com/RareDiseaseDay.US

the Global Genes Project - https://www.facebook.com/globalgenesproject

NORD - https://www.facebook.com/NationalOrganizationforRareDisorders

It does exist!

Yes, mitochondrial disease is real. How do I know and doctors at Boston’s Children’s Hospital don’t?

I’m glad you asked.

Every day I wake up and I lay in bed assessing my energy levels for the day. It doesn’t help every time I take it easy the night before. I’m like a cell phone battery. You know the ones that keep a charge for 5 hours one day and 2 the next. Anyhow, I assess my energy levels. I have to decide if I’m able to get out of bed and get dressed. Most days I come down stairs in my robe, and my husband brings me clothes and helps me put them on. Then when I get down stairs I have to decide to I eat breakfast and risk being in the bathroom all afternoon? If I eat I will be using energy to digest my food, and if everything goes well I may have energy to go out and do something. Yep. That’s right eating is hard. Digesting takes energy.

Next I take all my meds and do my neb treatments. I’m usually sitting at the computer for this and able to hop on line to facebook to do a quick check in on family and friends. Once I’m done, I get up and walk back to the couch. Do I sit and watch TV or do I take a nap?
If I don’t take a nap, and decide to help my husband with grocery shopping my night is planned for me. When we go I have to get a cart to push. If I sit in the wheel chair for the whole time my upper legs and thighs will hurt. But if I’m up and walking my lower legs and feet will hurt. Both ways cause my hips to scream at me…

But I WANT to go out. I WANT to be active. I WANT to breathe fresh air. Sometimes my body cooperates, but others not so much.


I think about these things, and I make choices everyday; that is how I know it is real.
I live it.
I hurt.
I’m tired.
I’m confused.
I’m uncoordinated.

People with mito are not “imaginary” we are VERY REAL and we NEED you to help us.

UMDF.org or Mitoaction.org