tag:blogger.com,1999:blog-4167831720468742672024-03-18T08:37:31.431-04:00The Life and Times of a MutantA blog about Christine Dunbar a wife and mother who has cystic fibrosis and two mitochondrial mutations. I'll be blogging about expiriences as a mother, a wife and a patient.Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.comBlogger87125tag:blogger.com,1999:blog-416783172046874267.post-77578633498385402112016-11-10T08:32:00.000-05:002016-11-10T08:32:38.062-05:00November 2016Since my last update, a lot has happened. I continued to have these reactions to my meds and now I have only been on one antibiotic for the last 5 months. I have felt better recently compared to the beginning of the year when I was on all those other medicines. I just have an appointment in October my PFTs had improved, and I'm still waiting to find out about my sputum culture. Depending on the results they may add more antibiotics, but hopefully that won't happen. <br />
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Kate has finished college,and moved back home while she gets herself together. Our roommate, moved out due to a family emergency and Kate's best friend Kearie is moving into his old room. It's a time of transition for us, that's for sure. As a country we just elected a new president, Donald Trump. I have several concerns, but my biggest is how his changes will effect my family. However, I choose to focus on my hopes for the future.<br />
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The news is reporting on all of the protests happening right now, because Trump has won. I won't say who I voted for, but I'm just hoping we can focus on the future and move forward as a country. No one wants to move backwards. I suppose we will have to see what happens.Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-58904455676601432582016-07-05T11:20:00.002-04:002016-07-05T11:20:27.608-04:00Camping in Cook Forest 2016It's been a while since my last update, I've just been so darn tired.<br />
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So in my last blog I discussed my NTM bacteria's, and my experience with Amikacin. They gave my Cipro after that, but oddly enough I had a reaction this time. I've had it before but I think the other antibiotics in my combo made it something I could not tolerate. Two weeks ago my blood work indicated that I needed a blood transfusion. My primary care doctor was out of town, and I decided to just go on my already planned vacation. I did call one of the doctors at NIH, and they suggested that I might have a tedizolid toxicity and that I stop taking it for a week and then get retested. So I went with my family; Frank, Kate, Kearie, Mary, Scott and Seth. We had a blast, it was relaxing and fun and exactly what I needed to get out of the funk I had fallen into. I'm sick of feeling sick. I haven't felt like my self in about 10 months. I had gotten depressed over it, and our vacation reminded me of some things I had forgotten. Thanks to my family, this trip was relaxing, refreshing and most of all fun.<br />
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Our car broke down on the way home and we need to buy another one. My mood is better, but I'm still not feeling so great. I put in a call to my primary doctor today, who should have me results from the last blood work by now, and hopefully a suggestion on how to help. At this point my last option is a blood transfusion, as far s I know. She may have another option, fingers crossed. I get IV therapy once a week/every other week so I know the place where I would be getting the transfusion. Additionally I have family who have had this done, but I'm always a little nervous about getting a new medicine or treatment. <br />
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In other news, my daughter is home visiting for her summer vacation! That has helped my mood too and I'm excited as we are closer to her graduating and moving home. She'll be moving back in and getting a job in the area (hopefully) and attending college in order to get the business class she needs. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-B1kcPmeFgz8/V3vPgygzexI/AAAAAAAAAxI/OiXCg6KbBoIFupE3eerTLB3DtkwNEN5lgCLcB/s1600/View%2BRiver%2B5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://1.bp.blogspot.com/-B1kcPmeFgz8/V3vPgygzexI/AAAAAAAAAxI/OiXCg6KbBoIFupE3eerTLB3DtkwNEN5lgCLcB/s400/View%2BRiver%2B5.jpg" width="400" height="212" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-zoQFSggtgDE/V3vPvGPF4vI/AAAAAAAAAxM/t1fN6qdacuMR-xwrL-17C8qXQq0bmw42QCLcB/s1600/Chrissy%2BClarion%2BRiver%2BJune%2B2016.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://1.bp.blogspot.com/-zoQFSggtgDE/V3vPvGPF4vI/AAAAAAAAAxM/t1fN6qdacuMR-xwrL-17C8qXQq0bmw42QCLcB/s400/Chrissy%2BClarion%2BRiver%2BJune%2B2016.jpg" width="400" height="300" /></a></div>Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com2tag:blogger.com,1999:blog-416783172046874267.post-74335719938217188202016-03-18T16:03:00.001-04:002016-03-18T16:03:21.319-04:00I'm not me, I need a Snickers.Sorry I haven't updated in a while, I have been unsure of what to say. I heard back about the sputum culture that I mentioned in my last post. I have 2 strains of Mycobacterium Abscessus and 1 strain of Mycobacterium Avium. My doctor explained that these are most likely contributing to my fatigue, which had been progressively getting worse. It also explained other symptoms that I was having too. <br />
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My CF doc got me in to see a doctor who specializes in these bacteria, and he in turn put me on some antibiotics. First I started Amikacin. I was on it for two and a half weeks and then I started getting migraines and a lot of sinus/ear issues so I had to stop taking it. We decided to stay on course and start the next antibiotic Azithromycin. After two weeks I started Tedozolid/Sivextro, after two weeks I stopped my Bactrim and started Ethambutol. So now I'm taking those 3 along with my other meds and nebs and my next appointment is in April. I'm still going in to get IV therapy, but because of my fatigue I'm going in every other week. <br />
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I've just been in a mood these past few months, a strange mixture of weariness, boredom, and unable to communicate well. I've been second guessing myself and generally feeling unsure about things. I went out by myself last week, grabbed some lunch and tried to shop a little but I felt uneasy. I wish I could explain it all. I want to be around the people that I love and care for, but I'm really self conscious. I don't like people seeing the 'sick' come out, and I feel like at this time in my life I'm not able to hide it very well. I guess I don't like appearing vulnerable? <br />
Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com3tag:blogger.com,1999:blog-416783172046874267.post-16976235361227180662015-10-19T14:55:00.000-04:002015-10-19T14:58:43.914-04:00Update fall of 2015I haven't updated in a while, and I'm sorry about that. I have just been so tired and on the days when I have energy I am out living. My PCP doctor is back and my IVs are set up again, and I'm happy about that. My last appointment I had to wait for almost 2 hours to see her though, and I'm not happy about that. I have been discussing getting a new PCP but I really *LOVE* the one I have, and my case is complicated. So I'm really not sure what to do yet, its a lot to think about. <br />
My IVs have been going pretty well so far. I've got a few more supplements to take, and my cholesterol has finally gone up. My vitamin levels are still not up to par, but we'll get there. I have hope.<br />
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I did go to NIH this past week for my CF clinic. My lung function dropped, I could tell without the test though. I could feel a difference every month. I'm waiting for the sputum culture results, they're going to send me some antibiotics to take. If my sputum shows no change then this drop is muscle related, and I have had increased muscle weakness here lately. I'm also going back at some point to get some tests run, to check my digestive system, my lungs, and nerves. Next week I am hopefully going to the dentist to get my teeth fixed, which will be nice to finally get it done. <br />
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As for the rest of life, it's going well. My daughter is still in college and doing very well, my husband is still amazing, and I am still extremely thankful for my life. Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-92143541494515439042015-06-17T16:35:00.000-04:002015-06-17T16:35:25.457-04:00The Middle Aged and the RestlessAbout 2 months ago I was getting IV therapy, but now I'm not. My PCP is out for medical reasons and the doctor that I saw in her place had absolutely no idea what to do with me. She sent a script in for 1 treatment (with only part of my treatment) for one time. I was pretty upset but I took solace that my doctor would be back in June. I ended up not getting IVs because the pharmacist noted the script was incorrect b/c it had Vitamin K in it and I'm on warfarin. So they wanted to make it with out the Vitamin K; but the doctor did not call them back. That's not all. The doc also prescribed me a new pain meds b/c my old ones don't help much anymore (and I was already take the max. dose)... any way she prescribed it for 400mg but they only do a 500, but the doctor never called them back to correct it (after she had been notified and asked to fix it). So I called to find out if they were scheduling for my doctor and was told she would be back sometime in July. <br />
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I called again a few days ago and they say she won't be back until September. SEPTEMBER.<br />
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I'm angry. I don't want anyone to jump through hoops for me, but I do think the doctor filling in should be doing more. With out my IVs I am exhausted. My pain feels worse, although I guess I could just be that tired. I don't know anymore. We just got back from a camping weekend, which was a lot of fun. I don't think anyone notice how tired I was. Maybe they did. I don't know.<br />
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I enjoy making memories with people I love, so I usually put my pain or fatigue on the back burner to do it; so if I cancel I'm feeling really bad. I'd invite people over but my house is not clean enough and my yard is a freaking jungle. My husband is having his own issues with fatigue and will be going in this week for a sleep study. I hope he gets help one of us should have energy. <br />
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This weekend my daughter is coming to visit for Father's day, and think I'll need they wheel chair more b/c of the fatigue that the pain. Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-52073350008250130822015-05-01T16:07:00.000-04:002015-05-01T16:07:05.048-04:00May is...It's been a while, I've been busy and exhausted and busy again and exhausted again. (Rinse and repeat)<br />
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May is Cystic Fibrosis awareness month! I was going to post my daily routine and tell you how many pills I take. But after reading a friends post on face book, I realized that all you know about me is my struggle.(Unless we have met personally) So instead I want you to know that I love my life. I have wonderful husband who takes care of me (and works full time), I have a witty and intelligent daughter who makes my world a brighter place every day, I have great friends who I can always count on to make me smile, and my family is full of awesome people! <br />
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My life *IS* a struggle, but so is everyone else's. My struggle is not the same as yours, and the two can not be compared. Your struggle is just as valid as mine.<br />
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Cystic Fibrosis is a genetic disease that affects the lungs and digestive systems of approximately 30,000 children and adults in the US. We all take many pills every day and do treatments resulting in hours of our day spent on "maintenance". We need a cure because this disease still cuts lives short. CFF.org is a great foundation working to find a cure. They have helped to fund a drug that is out now called Kalydeco, which is doing wonders for a small group of us with a specific mutation. They are currently funding the research and development of a medicine that will help a larger group as well. BUT neither of these things are a cure. So we can still really use donations. <br />
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I am more than CF.<br />
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I am a mother. I am a wife. I am a daughter. I am a sister. I am a friend. I am a Godmother. I am a good person. I am strong. I am funny. I am a bird watcher, a dog lover, a "ghost hunter", and a gamer. <br />
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There are so money facets of me and cystic fibrosis is just one of them.Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-41752863515693266932015-03-18T11:07:00.001-04:002015-03-18T11:07:41.615-04:00Empty Nest?I haven't updated this blog in a while, but I wanted to come on to update on the current going on. I got a cell phone and with a few apps I have been able to keep track of my "episodes" and I have realized that when my joints hurt my temperature goes up. How weird is that? I plan on discussing it with my doctor at my next appointment. <br />
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My daughter left for college in October 2014, and I haven't seen her since December (when I was sick). This may not seem like a long time - but it feels like years have passed. She left in October (the 3rd was the drop off day) and she came home in November for Thanksgiving, she was gone 7 weeks but we went to visit her twice during that time. Then she cam home for Christmas, that time she was gone for 3 weeks. As of today it has been just over 9 weeks, and we haven't had the chance to visit. This weekend we hope to visit, and I can not wait. I miss her so much!! I enjoy spending time with my husband but it feels like a piece of us is missing, and I know he feels the same way. The 3 of us have always been so very close, and I just feel like the whole world is changing. People used to talk about their kids leaving, and they would say how hard it was, and I guess I just always thought it would be different for us. I'm not really sure why though. For 18 years the 3 of us were best friends, and we still are we just don't live together anymore. It's a tough transition for Frank and I. <br />
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I have dealt with many different medical issues personally and as a care giver, but this is not something I feel like I can navigate. I am so happy she is out doing her own thing, and I am so very proud of her. I just don't know how I'm going to get through this.<br />
Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-68537717043046093472014-12-31T11:27:00.002-05:002015-03-18T11:10:57.298-04:00Out 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!! <br />
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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.<br />
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2015 is another year to make some GREAT memories. I hope to spend more time with my family and friends. <br />
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CFDunbar Designs put out some nice shirt designs through out 2014!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-fr8eepRHQlE/VKQe9ZdeUtI/AAAAAAAAAFc/e7gvKtq-YuE/s1600/322dad5e-a707-4103-81b3-fd99dabba1ec.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-fr8eepRHQlE/VKQe9ZdeUtI/AAAAAAAAAFc/e7gvKtq-YuE/s320/322dad5e-a707-4103-81b3-fd99dabba1ec.jpg" /></a></div><br />
Available at https://www.teepublic.com/t-shirt/99502-shed<br />
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Available at https://www.teepublic.com/t-shirt/45247-i-am-rage<br />
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Available at http://shirt.woot.com/offers/hello-kitsune-1?ref=cnt_ctlg_dgn_0<br />
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Available at https://www.teepublic.com/t-shirt/45074-mandatory-enemies<br />
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Available at https://www.teepublic.com/t-shirt/110262-harley-nouveau<br />
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Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-88019939020827748082014-12-15T16:56:00.001-05:002014-12-15T16:56:53.658-05:00Ready 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. <br />
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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<br />
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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. <br />
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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! <div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-SSTLxz4-nUY/VI9YLyFgtuI/AAAAAAAAAFE/ocy4pbIi9Co/s1600/fountain.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-SSTLxz4-nUY/VI9YLyFgtuI/AAAAAAAAAFE/ocy4pbIi9Co/s320/fountain.JPG" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-hG6hvAeSfLk/VI9YbA-tciI/AAAAAAAAAFM/tmIcHFrgaIo/s1600/Chrissy%2B1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-hG6hvAeSfLk/VI9YbA-tciI/AAAAAAAAAFM/tmIcHFrgaIo/s320/Chrissy%2B1.JPG" /></a></div>Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-69264577189258358272014-12-05T10:16:00.001-05:002014-12-05T10:16:46.857-05:00TimeI 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! <br />
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Well, to be fair they gave me IV fluids and oxygen. <br />
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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. <br />
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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. <br />
I appreciate them, I appreciate every second I have with them.<br />
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Time is precious.<br />
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Our time is finite.<br />
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Make your time matter. <br />
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Even if it is just helping your neighbor, or being a role model for the kid next door. <br />
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Do something guys.<br />
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Don’t wait. Do it now.<br />
Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-74930347999362297172014-10-20T09:41:00.001-04:002014-10-20T09:41:08.604-04:00The 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. <br />
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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!<br />
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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.<br />
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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). <br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-ufMLOkva2Wg/VEUNK6tA8aI/AAAAAAAAAE0/sdJOW7Qvus4/s1600/Kates%2BSenior%2Bpicture.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-ufMLOkva2Wg/VEUNK6tA8aI/AAAAAAAAAE0/sdJOW7Qvus4/s320/Kates%2BSenior%2Bpicture.bmp" /></a></div>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. <br />
Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com1tag:blogger.com,1999:blog-416783172046874267.post-8314252289996747562014-09-23T23:18:00.003-04:002014-09-23T23:18:51.663-04:00I 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. <br />
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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. <br />
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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.<br />
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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<br />
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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. Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-35401421899262769232014-09-19T12:40:00.003-04:002014-09-19T12:41:57.214-04:00Weight loss with Mito and CFI 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. <br />
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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). <br />
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The problem? <br />
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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.<br />
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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. <br />
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For more info on Mitochondrial Disease go to UMDF.og<br />
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For more info on Cystic Fibrosis got to CFF.orgChrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-22094335476225126192014-09-16T12:01:00.002-04:002014-09-16T12:01:48.733-04:00AwarenessThis 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.<br />
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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. <br />
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To learn more about Mitochondrial Disease go to umdf.org <br />
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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) <br />
I’m still waiting. <br />
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To learn more about Cystic Fibrosis go to cff.org<br />
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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*.<br />
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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. <br />
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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.<br />
Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-50688651522157592022014-08-20T18:21:00.001-04:002014-08-20T18:21:57.820-04:00Clinic + Duck = AWESOMEI 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. <br />
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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. <br />
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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.Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-86114407784729343852014-08-08T11:42:00.000-04:002014-08-08T11:42:23.521-04:00EasySitting 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. <br />
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. <br />
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You show up.<br />
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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. <br />
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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. <br />
Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-50700359442341858592014-07-18T20:41:00.000-04:002014-07-18T20:42:16.781-04:00Rough dayI 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. <br />
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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. <br />
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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…<br />
Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-70582014167740223272014-05-14T11:26:00.001-04:002014-05-14T11:26:02.433-04:00College 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. <br />
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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! <br />
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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. <br />
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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. <br />
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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. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-YxRpDrtu2OY/U3OKS-ZP9KI/AAAAAAAAAEQ/Dd8rCbdeUOY/s1600/100_2936.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-YxRpDrtu2OY/U3OKS-ZP9KI/AAAAAAAAAEQ/Dd8rCbdeUOY/s320/100_2936.JPG" /></a></div>Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-26021991419251641952014-02-25T13:33:00.001-05:002014-02-25T13:33:33.559-05:00Rare Disease DayFebruary 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!!!<br />
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Cystic Fibrosis is a rare disease, listed on NORD (National Organization for Rare Diseases). <br />
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https://www.rarediseases.org/<br />
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They have a list available on the website. According to NORD's page on CF, <br />
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"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 <br />
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 <br />
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."<br />
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I challenge EVERYONE reading this blog to go to their site, and look at their list find something out about rare diseases. <br />
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What makes a disease rare?<br />
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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. <br />
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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:<br />
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What is a rare disease video<br />
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https://www.youtube.com/watch?v=MBwCcVGFODs&feature=c4-overview-vl&list=PLMmYBWQscoiFDuDK_G_3dyOsOh_Mu-V8X<br />
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What is it like to have a rare disease video<br />
https://www.youtube.com/watch?v=_aMyqn88SEk&list=PLMmYBWQscoiFDuDK_G_3dyOsOh_Mu-V8X<br />
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Info<br />
http://rarediseaseday.us/take-action-now/press-kit/<br />
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Also on Facebook look up:<br />
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Rare Disease Day US - https://www.facebook.com/RareDiseaseDay.US<br />
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the Global Genes Project - https://www.facebook.com/globalgenesproject<br />
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NORD - https://www.facebook.com/NationalOrganizationforRareDisorders<br />
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Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-83524234328284178182014-01-10T19:10:00.000-05:002014-01-10T19:10:02.362-05:00It does exist! Yes, mitochondrial disease is real. How do I know and doctors at Boston’s Children’s Hospital don’t? <br />
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I’m glad you asked. <br />
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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. <br />
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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? <br />
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…<br />
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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.<br />
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I think about these things, and I make choices everyday; that is how I know it is real. <br />
I live it. <br />
I hurt. <br />
I’m tired. <br />
I’m confused. <br />
I’m uncoordinated. <br />
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People with mito are not “imaginary” we are VERY REAL and we NEED you to help us. <br />
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UMDF.org or Mitoaction.org <br />
Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-48417977496551452852013-12-05T12:42:00.000-05:002013-12-10T12:43:00.016-05:00Mutants Unite, Cystic Fibosis Survey and an update!Hello all! I'm in a pretty good mood today, despite not feeling 100%. I've been having an even harder time than usual with coughing and wheezing. Saturday is a busy day so I am keeping my fingers crossed that I feel well enough. I'm having lunch with my best friend, Jessica, and other mom's. Jess is going to have her first child and I thought it would be nice to just get together and just support her. Later that night the cemetery my Grandmother and Grand Donald are buried in is having a candle light vigil. I'd love to be able to do both so I have been trying to take it easy this week. <br />
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We had Thanksgiving at my house and my daughter cooked dinner. A friend of hers from her culinary classes came over to help, as well as an old family friend. It was a really nice dinner with two stuffed turkey breasts and a pork crown roast, for sides we had creamed greens, green bean casserole, sweet potato puree, mashed potatoes, stuffing, gravy and cranberry chutney. It was so good! Frank's parents and my parent's were here too, which just made everything better! I love spending time with the people I love, so they day was just awesome!<br />
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I got an email a few weeks ago asking me if I could use my blog to ask for CF patients who would be willing to help out the Cystic Fibrosis Foundation by answering a few questions. Specifically adults with CF. They are conducting online discussion groups and interviews with adults to learn more about what we need and how they can better serve our needs. Will you sign up to participate? Cut and paste the following link:<br />
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http://dimensions.edgeresearch.com/e.asp?p=CFF1301&S=C&ps1=c<br />
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Oh and I have to show my husbands latest tee shirt designs!! When I was first diagnosed with CF and mito we joked with my doctors about me being a mutant, maybe possibly I'd be able to join the X-Men. LOL Flash forward to this month my husband has designed tee shirts inspired by me and that discussion so long ago. I know I'm not the only one to call myself that, so I wanted to share his work! He has designed a mitochondrial mutant shirt <div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-lVLNa9mt54g/UqC3ZQmPzcI/AAAAAAAAADY/FRTqOqrS7qM/s1600/mitomutant.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-lVLNa9mt54g/UqC3ZQmPzcI/AAAAAAAAADY/FRTqOqrS7qM/s320/mitomutant.jpg" /></a></div><br />
You can buy it on teepublic.com https://teepublic.com/show/8056-mitochondrial-mutant-in-black <br />
or get it as a hoodie on redbubble.com at http://www.redbubble.com/people/cfdunbar/works/11166939-mitochondrial-mutant<br />
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The next shirt is inspired by cystic fibrosis <div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-OFgey6D8Oko/UqC4WdyaHpI/AAAAAAAAADg/RGtJ1QsrbK4/s1600/CF+mutant.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-OFgey6D8Oko/UqC4WdyaHpI/AAAAAAAAADg/RGtJ1QsrbK4/s320/CF+mutant.jpg" /></a></div><br />
This one is also available on teepublic.com https://teepublic.com/show/8051-respiratory-mutant-in-black <br />
or as a hoodie on redbubble.com http://www.redbubble.com/people/cfdunbar/works/11166952-respiratory-mutant?ref=work_main_nav<br />
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Later we discovered that I also had a blood clotting issue, so the next shirt is inspired it <br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-pKK5-m7zT6c/UqC6L37FAzI/AAAAAAAAAD0/5XtO1-STP0Y/s1600/blood+mutant.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-pKK5-m7zT6c/UqC6L37FAzI/AAAAAAAAAD0/5XtO1-STP0Y/s320/blood+mutant.jpg" /></a></div><br />
Again this is available as a tee shirt at teepublic.com https://teepublic.com/show/8060-blood-mutant-in-black <br />
or as a hoodie at redbubble.com http://www.redbubble.com/people/cfdunbar/works/11166972-blood-mutant<br />
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Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com234tag:blogger.com,1999:blog-416783172046874267.post-53665089245856989612013-11-06T13:42:00.000-05:002013-12-10T12:43:33.182-05:00Clinic and other things...So I had clinic on the 30th, and after not going in a year I expected to get flak from my doctor. Which I did. My PFT's were 74%, I got blood work and a sputum culture. All in all other than some shortness of breath and wheezing problems recently, I think CF wise I'm doing OK. *Knock on wood* I do have a DEXA scan and an EMG/NCV test coming up, but I expect them to go well. My primary doctor's office called in reference to labs I get for them (when I get IV's) and I some of my results are still low, despite increasing my dose. So I have some more supplements to take... YAY. More pills.<br />
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In other new, my husbands tee shirt designs are getting out there and doing well! <br />
On Facebook - https://www.facebook.com/CfDunbarDesigns<br />
On Twitter - https://twitter.com/CFDunbarDesigns<br />
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His designs are on: <br />
Tee Public - https://teepublic.com/user/cfdunbar<br />
Red Bubble - http://www.redbubble.com/people/cfdunbar/portfolio<br />
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He is actually working on two designs for me. One for cystic fibrosis and one for mitochondrial disease. I'll post the links for each on here when he gets them done. They aren't really awareness shirts, I mean you may get some questions but the idea was definitely not to fundraise. Although we will be donating a portion of his profits to each respective foundation. I don't define myself by my illnesses but I certainly feel as though they have helped to shape who I am. <br />
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Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-84495318413712367452013-10-29T11:51:00.000-04:002015-03-18T11:20:02.211-04:00The painful adventureLast night my husband and daughter both came home exhausted. I hadn't been having a great day either, as I hadn't taken my pain medicine the day before. We just ran out, and had to wait for the cash flow to pick it up. When we went the pharmacy didn't have enough for the full script so I only got a partial. Anyhow...<br />
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We decided to go to IHOP so we could have a no effort dinner, with pancakes of course. I got an omelet covered in hollandaise, so basically a plate full of eggs and cheese. YUM! I had some problems getting in and out of the car, but our handicap tag was a big help (so we didn't have to park to far away). While eating my feet became increasingly hotter and more agitated. I got up to go to the bathroom and I thought my legs were going to explode. When we're in public I do my very best to not look like I'm having a problem, and last night I tried but failed horribly. Frank and Kate knew right away that I was getting worse, and when they remembered that I had missed my lyrica the day before they new a pain storm was beginning. A pain storm is what my husband calls it, I call it hell, but tamato/tomatoe. <br />
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I finished my dinner because I knew I was going to need a full stomach for my meds. We got home and I get inside and go right up stairs, better to do it when I'm in pain than to wait and possibly cause a flare up. So Frank and Kate helped me up the stairs and started a running a bath for me. It was loaded with Epsom salts and another bath salt mix to help relaxation. I got in the tub, with a lot of help, and the hot water and salts helped a lot. BUT the biggest help of all was my daughter Kate. After she and her dad helped me into the tub, she got a 'Choose Your Own Adventure Book' and as per the routine she red it to me while I soaked and relaxed as best as I could. This is what she does every time this kind of thing happens. Incase you're wondering...she IS amazing. Not just when I'm in pain, but all of the time. She hates it when I brag about her, so I guess its good that she doesn't read this blog. She has been cooking since she was 4, she is taking vocational culinary classes and is going to culinary school after high school. She has a 4.0 and cleans with out being asked. She is funny and has a healthy perspective on life. I know, I'm her mother and you may be thinking I'm jaded. Maybe I am. <br />
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Today has been OK so far. I still hurt, but Frank will be home to help me with lunch and Kate will be home by 4, so I have plenty to look forward to.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-aFNA9wGNzpo/Um_ZMXwLuhI/AAAAAAAAADI/OtcV5tvoh0I/s1600/Kate+and+Chrissy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-aFNA9wGNzpo/Um_ZMXwLuhI/AAAAAAAAADI/OtcV5tvoh0I/s320/Kate+and+Chrissy.jpg" /></a></div>Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-14494109329804717212013-09-19T21:26:00.000-04:002013-09-20T14:43:53.900-04:00More mito awarenessIt's mito awareness week as most of my friends and family know, but a few still seem wrapped up in their own lives. I'm not really surprised, it happens during CF awareness too. I do not for one second think I am the center of the universe, but it would be nice if some of my loved ones at least acted like they were interested in a cure. For either illness. It isn't as if we only get to pick one charity/disease to champion so I am not sure why it is like pulling teeth to get them to come out to an event or to share a post to raise awareness. <br />
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Back to raising awareness... <br />
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Mitochondria are in almost every cell in the body, and produce 90% of energy needed by the body to function. When there is a dysfunction in the mitochondria the body is not able to convert food and oxygen to energy. The heart, brain, muscles and lungs, are the most affected by mitochondrial disease because the require the most energy. Someone affected may have strokes, seizures, gastro-intestinal problems, (reflux, severe vomiting, constipation, diarrhea), swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease. <br />
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Some of my symptoms overlap with my cystic fibrosis, so I guess in a sense I got a double whammy. Please go to UMDF.org for more information on mitochondrial disease and how you can help. Another good site to check out is mitoaction.org<br />
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Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com0tag:blogger.com,1999:blog-416783172046874267.post-16215698970713010002013-09-16T12:48:00.001-04:002013-09-19T21:18:37.995-04:00Mitochondrial Disease Awareness weekYesterday was the start of mitochondrial disease awareness week! So I'm going to post every day with some information on what exactly this disease is and what it does to me personally. I am not doing this for sympathy or anything but rather so that people can read and see how mito effects me personally. So to start off, what is mitochondrial disease? According to the United Mitochondrial Disease Foundation (UMDF.org) it is:<br />
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"A result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection."<br />
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So technically:<br />
"Mitochondrial diseases are the result of either inherited or spontaneous mutations in mtDNA or nDNA which lead to altered functions of the proteins or RNA molecules that normally reside in mitochondria. Problems with mitochondrial function, however, may only affect certain tissues as a result of factors occurring during development and growth that we do not yet understand. Even when tissue-specific isoforms of mitochondrial proteins are considered, it is difficult to explain the variable patterns of affected organ systems in the mitochondrial disease syndromes seen clinically." <br />
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Mito Action adds:<br />
•Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function.<br />
•The incidence about 1:3000-4000 individuals in the US. This is similar to the incidence of cystic fibrosis of caucasian births in the U.S.<br />
•There are many forms of mitochondrial disease. <br />
•Mitochondrial disease is inherited in a number of different ways <br />
•Mitochondrial disease presents very differently from individual to individual. <br />
•There may be one individual in a family or many individuals affected over a number of generations.<br />
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There are many of them, which means there are many different symptoms. But the most common are: <br />
•Poor Growth<br />
•Loss of muscle coordination, muscle weakness<br />
•Neurological problems, seizures<br />
•Autism, autistic spectrum, autistic-like features<br />
•Visual and/or hearing problems<br />
•Developmental delays, learning disabilities<br />
•Heart, liver or kidney disease<br />
•Gastrointestinal disorders, severe constipation<br />
•Diabetes<br />
•Increased risk of infection <br />
•Thyroid and/or adrenal dysfunction <br />
•Autonomic dysfunction <br />
•Neuropsychological changes characterized by confusion, disorientation and memory loss. <br />
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My current symptoms:<br />
•Loss of muscle coordination, muscle weakness, muscle cramps, muscle spasms<br />
*Nerve Pain <br />
*Joint Pain (Fingers, toes, knees hips)<br />
*Poor absorption (result, several vitamin deficiencies) added complications due to CF<br />
*Poor Digestion (added complications due to CF)<br />
*Thyroid dysfunction<br />
•Neuropsychological changes characterized by confusion, disorientation and memory loss. <br />
*Liver (unsure if this is CF related or mito related or a combo)<br />
•Fatigue - everyday<br />
*bone pain<br />
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On a scale of 1 - 10 today my fatigue is an 8, muscle pain is 3, joint is 6, and nerve is 5. This numbers are my usual range. When I have a good day I still have my symptoms, they might all be below a 5 or I am hiding it. Which I do all too well, according to my husband. <br />
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Chrissyhttp://www.blogger.com/profile/08642123651173511570noreply@blogger.com2