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…