November 2016

Since 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.

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.

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.

Camping in Cook Forest 2016

It's been a while since my last update, I've just been so darn tired.


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.

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.

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.

Empty 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.

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.

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.

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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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.

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.

The painful adventure

Last 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...

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.

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.

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.

French Fries fix everything...until you eat too many

So a lot has been happening in the world. Family has been sick and friends are hurting, it has been a tough year so far. Through it all, a problem has been niggling in the back of my mind. I am getting worse. I have been trying to rate my pain and fatigue every day. The fatigue has stayed the same. But the pain hasn't, the past few weeks I have not been lower than a 5. I have been taking lyrica every day, and a vicodin at least once a day (usually to help me sleep).


I love my primary care doctor, I think she is wonderful.She absolutely thinks outside of the box, which is what a zebra like me needs. Some of you know the reference but for those who don't; zebra is a slang for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so "zebra" is the broader concept. It came from the saying, "When you hear hoof beats behind you, don't expect to see a zebra". http://en.wikipedia.org/wiki/Zebra_(medical)



So as I said, I need someone to think outside of the box. But I also need a specialist. So I contacted one of the doctors that discovered my mutation and wrote an article on me (http://www.ncbi.nlm.nih.gov/pubmed/12400067). I'm excited that she says she is going to see me! I can't wait! Don't get me wrong, there is no cure and I know that. Not yet anyway. But there could be a better way to treat this pain and discomfort.



In other news, our new dog is doing well. My daughter has a job in a kitchen, and loves it. My husband is doing well too, except he fell down our steps the other day. He only fell down the last 4 but he landed flat on his back. He has been sore for the past few days but he seems to be doing better. I also got to hang out with my BFF, Jessica. I have been resting and not really doing anything, but when I had the chance I hung out with her! She lives far away, I could drive to her house more often....if I could drive more often. Anyhow we went out and got french fries which are a cure all. That is until you eat to many, then they are the problem! Jessica and I lost touch for years, and a few "best friends" filled in. But they paled in comparison to Jess. I'm not saying she doesn't have flaws, but her flaws compliment my own.



All in all, I really do have a blessed life. What is illness when you have the kind of family and friends I have?

Disability update...

Well, I had my disability hearing on the 31st. My lawyer says it went well and he is pretty positive about it, but I am still nervous. The say I will receive the judgment in 6 to 8 weeks…I’m not getting my hopes up that this is finally over.

I’ve been pretty exhausted for the past two weeks or so, and the pain in my leg and arm has gotten better. The hip pain has gotten worse though. I can lie down in bed for about 8 hours, and then I have to get up because the pain is pretty bad, and my hips are stiff too. It’s not something that I’ve had a problem with before so I am unsure of how to handle it. And since I don’t have health insurance, it’s not something I can get help with. At least not right now. I’ll need to save up for an appointment, but I am going to email NIH to see if they can help. I’m still not in a study for my mitochondrial disease, but it looks like I might get into the undiagnosed clinic (because my symptoms don’t fit into any know mitochondrial disease).

Kate is working on her senior project this week, and she is really enjoying it. It is so nice seeing her do something she loves to do. I know a lot of parents say their child deserves something special, but Kate really does. She was abducted by her birth mother when she was 2, then she had to put up with the birth mothers constant dropping in and out, not to mention my health and that she helps out around the house often. I love her so very much.

Disability

For the past week I’ve been feeling pretty tired and yesterday I started experiencing bone pain. (I call it that b/c it feels like the pain when I broke my ankle/wrist/knee. Not the break part but the pain you feel after the bone sets and it starts to heal.) My left arm and my right leg, not to mention my hips feel out of socket. I couldn’t even put my own pants on. I’m not feeling sorry for myself but frustrated with my body. I’m going to try some Bayer Back and Body, but I’m not sure if it will help.

Last post I was excited to go on vacation. We went to Duck, NC with friends. We had a pretty good time although I felt like I missed a lot. My biggest missed moment was watching the sunrise from the beach. I just couldn’t wake up to do it. But I did spend some time on the deck, granted it was in the afternoons and evenings but it was nice. I did get a lot of pictures to help me remember as many moments as I can!


This morning has been ok despite the pain, Frank helped me down the steps (and getting dressed) and Kate made me some breakfast. She’s working on her senior project next week, so she won’t be home to help in the mornings. I have my disability hearing tomorrow, so it will be a busy day. I’m hoping that it goes well, and that I can get threw it without crying. But I guess we’ll see.

Wednesday? Already?

This morning I woke up congested, and spent my first two hours awake coughing, hacking and spitting. (Pretty visual- I know) Because of my mitochondrial disease this coughing will be my major activity for the day, because today I woke up with very little energy. Sunday I took Kate out shopping to pick up things she needed for Prom, and on Monday Kate and I went grocery shopping. (Because Frank was sick.) So yesterday I was pretty much useless and today I’m still feeling pretty sore. We have friends coming over this weekend and I’d like to not be in pain the whole time so I’m taking it easy for the next few days. Kate still needs some things for Prom but I think Frank is going to take her out to get them. As long as I’m not driving I should be able to go with them, but I’ll have to skip going into the store unless we take the wheel chair. (Which I hate, because people stare. Seriously. You would think that in this day and age a chick in a wheel chair wouldn’t be such a unique sight, but apparently it is. And those who don’t stare get in the way and then are annoyed when they have to move for the chair.)



After coughing everything up (thank you vest) I’m actually feeling like today is a pretty good day lung wise for me. My lung capacity is pretty good for an adult with CF (77%) but the problem is keeping it there. Because of my mitochondrial disease I have exercise intolerance, some days I might be able to do a few exercises while others there is no way I could. So for right now, I’m doing exercises to keep my muscles from getting any weaker. Exercise is important to CF patients, so the fact that I can’t do it is a real problem. Speaking of, I have to call my clinic and set up my next appointment. I’ve been forgetting, which is also mito related. My memory is terrible.



Here lately my sinuses have not been happy with the weather, so I’ve been taking extra meds to keep them in check. I’m still taking my standard antibiotics and *knocks on wood* everything seems to be going well. Tonight I’m making dinner. I picked something pretty easy with no prep work needed, a pasta casserole type thing. Its rigatoni and pepperoni with ricotta and tomato basil sauce, and I’ll have to have help getting it in and out of the oven.

I can't believe it is Wednesday already.  I feel like it should be Tuesday or maybe even Monday, so that I can get things done. 

My colors are blush and bashful...

I was admitted to the hospital in the beginning of February and I was in for about 14 days. I was on IV antibiotic and met with quite a few doctors. I saw a neurologist, a neurogeneticist, 3 rheumatologists, nutritionist, opthamologist, geneticist, physio and occupational therapy (and of course my CF doc). I had a chest X- ray, MRI, swallow study, an ECHO, abdominal ultrasound, EMG/NCV, an eye full exam, and a q sweat. (Not to mention a ton of blood work.) So some of the tests came back 'off'. They are trying to fit me into a study to help with the pain, but I'm trying not to get my hopes up. Having a unique mitochondrial mutation leaves the doctors unsure of how to treat me; which means I'm just stuck in limbo waiting for someone to figure me out. So I suppose we will see what happens. On a positive note I went in with a 67% lung function and came out with 77%...

I woke up Monday with a stuffy nose, sore throat and chest congestion. I was hoping it was allergies, but that was just wishful thinking! I am still sick and I feel worse than I felt on Monday. So I put in a call to my doctor to let her know 17 days out of the hospital...and I'm sick. AGAIN. The last time this happened was in October and it lasted until this hospital visit. I'm frustrated, but not as frustrated as my husband. Sometimes I consider lying and telling him I feel fine...but then I realize that I need his support. I just wish he had more support. Sometimes I'm not sure his family understands his stress level (b/c of me), hell I'm not even sure he tells his friends. But Frank is a worrier, and to quote a line from Steel Magnolia's- "I never worry 'cause I always know you're worried enough for the both of us". That's Frank...worried enough for the both of us.

Anyhow...my family is going through some turmoil right now, nothing that I feel comfortable posting details about online. A few of my friends are sick right now too. I wish I could do something. For my family and friends; but physically...I just can't. At least not right now, hopefully if I get a new diagnosis from NIH that I'll get my energy and muscle control back, not to mention get rid of this constant ache.

We bought a ton of Girl Scout cookies so far, in an effort to show support. I'm sure I will have an extra butt cheek to show support at the end of this cookie sale! As for my daughter? She's made Honor Roll with Distinction; I am so proud of her. She is doing well, still cooking and loving it! If there is one thing in this world that I did right, it was raising Kate. It is the most important job in my life, and the thing I'm most proud of (being a Mom).

Another week come and gone...

So this week has been a busy one, but we all managed to get through it fine! Kate got sponsored for a cooking class this past week, and she got one for a class in August too. I’m so excited for her, although I think my legs might need a vacation afterwards! But seriously, Kate has this opportunity to work with an amazing chef; so I’ll do what I have to do to make sure it happens. I know moms brag about their kids but I really think I have a wonderful, talented, and awesome daughter.
Other than that I had NIH this week, and things went ok. Frank has started taking me and when he can’t my brother does. I can’t drive that far anymore. Anyhow he isn’t used to getting the run around or the, “we don’t know what to do with you speech”; so if you ask him how the appointment went it was disappointing. I guess I should feel that way too but somehow I just can’t find it in me anymore to get upset. I mean don’t get me wrong I do spend many a night crying over this whole mess that is my health, but that is out of frustration, I think. Maybe it’s disappointment too…???


So my CF doc tells me about an undiagnosed disease clinic that is at NIH, and she wants to try to get me in. I’m all for that, it seems like NIH discovered these “novel” mutations and then a few years later decided it was too much work to keep up with. At times I feel like a bug in a jar, but I must be an uninteresting bug because they don’t even seem to be watching me anymore. So while I do have hope that NIH might come through, I will not be surprised if they don’t.
I suppose I should get used to the idea that no one will ever really understand me medically speaking. It’s difficult for me to explain to people what I have because while it is a mitochondrial disease, they cannot tell me anything more specific. The only thing more frustrating; to me, than having an invisible disease is having to tell people that you have an unknown (invisible) disease.
So tonight I’m sitting online and relaxing typing this blog post and playing on face book. My sleep schedule has been thrown off. I didn’t take pain meds all week, as I was driving, so know that I’ve taken one it’s keeping me awake. Frank is up stairs drawing, but I think I’m going to sneak in and go to bed!

Playing catch up...

My last entry was back in February; so I'm going to try to catch you up. I wasn't feeling well for a while. As I started to feel better my friend Chris offered Frank and I her condo in Ocean City for a week. So we decided; since we haven't been on a vacation in a while, that we were going to go! I really love the beach, a lot more than I did when I was younger. It is just a relaxing and peaceful, and our trip was wonderful. My little brother Pete went with us (as well as Kate of course) and everyone really had a great time! We came home to new living room furniture (sofa and love seat) which was nice, and then we all got sick the following week.

That brings us to today, where everyone is definitely feeling better! I'm excited about my birthday coming up (Thursday); I'll be 34. It seems like just yesterday that Kate was born and I got married! So this week I have been on a big gratitude trip. I am so thankful for my life, and I have been so blessed with my family and friends. Frank and Kate are taking me out for my birthday on Saturday, but I have no idea where we are going! I think they are going to blind fold me in the car! I don't get a hint either, when they asked what I wanted I said to spend time with them. So I'm guessing that's what we are doing, going to spend the day together. Other than that I have no idea! It will definitely be a surprise!

I also have to post about my daughter. Kate and I both lead teams at our local Great Strides CF walk, but last year I just couldn't participate. (I wasn't feeling well and my grandmother had just passed away) This year we were talking about it and Kate said she'd like to take over my team this year and lead it for me. So she did. She and I worked on a montage for the walk this year and so far it seems to have gotten a really good response!

Make video montages at www.OneTrueMedia.com

January 22, 1920

Up late doing school work! No worries though I have really decided that I am so lucky to get this experience, it is the best thing I have done in a while. (Not the best thing ever because that would be Kate!)

So January 22 my grandmother would have been 91 years old; I can hardly believe that she is gone even though it has been 9 months since she passed. I still miss her like it was yesterday. Frank, Kate and I went to her grave, I was afraid that if she thought I forgot she might haunt me! LOL One year my dad forgot her birthday and she had a fit! She never let him live it down either. I was going to take her a bag of dor-et- toes (the way she pronounced Doritos) but decided against leaving a bag of chips on a grave.
My mother in law has to get IV therapy to boost her immune system, and despite having not been to the therapy center in almost a year--the girls still remembered me. I'm happy the did, because I still remember them. I'm really hoping this insurance issue gets resolved so that I can go back for my therapy. It really did help me feel better. I complained about it a little while I was going--but after not going for a long time; I can really feel the difference. I'm a little jealous she gets to go! I hope they help her to feel better.

Angry...

So I've been in a really bad mood this weekend. I'm not sure why, there are many things this week that could have done it. Monday - Friday my daughter had a culinary camp and I drove her there every day. I was exhausted every night and am still sore from the driving. In addition to that my car broke down, I don't drive so I have been letting someone else drive it with the agreement that he would be responsible for gas and maintenance...well it's going to be a $300 - $400 fix the he can not afford. We can not afford it either. Also I was looking at some pictures of myself and I look sick. My mom showed me an obit in her local paper for a young lady with CF; and I drove my mother to work (where my Grandmother passed away).

I like to keep this picture up, you know, that things are good. Sometimes they aren't and I hate advertising it. No lectures please.

The weekend has just been blah for me. While I can list many things that happened to possibly cause I have no clue if it was one or all of them. Last weekend was my husbands 20th high school reunion; which went well, I thought. Although the walking was killer. So it is safe to say that right now...I am really exhausted. Frank and Kate have been very good about taking care of me this weekend, and I appreciate them for it. I still want to scream...Where did my health go? CF wise I am doing well
but my muscles and joints are awful. My mitochondrial disease is progressing, or at least I am developing new symptoms. Toes going numb, joints locking up, and joint pain in general are new symptoms. (started in the past few months) What sucks is that I'm not sure if or when these symptoms will get worse. And I'm just really pissed about it.

short update

Since my last update my beautiful daughter just turned 14. I can't believe I am old enough to have a teenage daughter! We had an awesome birthday part for her, thanks again to Fran! I had been telling Frank that I want to celebrate every year because you never know what will happen from year to year, and with my progressive mitochondrial disease I never know when I'll reach the point where I can't do it anymore. Well...I have reached that point, or I am incredably close to it. After her party I was so sore, so tired...it's been a week and I'm still feeling it.

I know there is more to being a mom than throwing birthday parties; but I still feel bad. I'm hoping that next year I will be feeling so much better that I can do it; but if not I'm sure I'll come up with something. I hate that I am not the same physically as I was last year. I mean I weigh the same, my PFT's are up a little bit (which is good) but my stamina is dwindling. It's difficult to explain I guess.

Where are you Christmas??

I need to get something off my chest, to whine and rant…
All of my life I have had battles with depression, and I have one a few with out medication or counseling. The last Christmas that I had a problem with was right after my Grandmother has a stroke a few years ago; and before that one it was when My Grandfather (on my Mom’s side) was dying of cancer.

This Christmas will be the first with out Grand Donald (on my Dad’s side); we are loosing my Grandmother’s house (she bought it the year I was born); several people from the cystic forums have been sick and we have lost some too. I am still not feeling well; I don’t think I have felt good in a while. Maybe a day or two here and there; but this year has been an eye opener for me. I don’t think my life is worthless or anything and I am not suicidal, but I just can’t get myself out of this funk.

Now Christmas is coming and we are broke; my usual answer to this would be “so what we have each other”. This year…I can’t seem to get it out. It seems to get caught in my throat. I don’t want to be around people, well truthfully I do…I just don’t feel like I’m good company. I have to prepare myself, go over conversation ideas in my head…normal stuff I would have talked about before all of this crap.

On Thursday I go in for my second EGD, and I’m having a difficult time finding someone who wants to go with me. I guess I can understand; who wants to take off work to sit in a waiting room all afternoon and then help a sedated Chrissy into the car? My Dad said he’d take me; but he had a cow when I asked him about it. I need someone who can come back to recovery and listen to what the doctor says because it might be important. So I’m a little concerned about it. Wednesday my piano is being moved from my Grandmothers house to mine. My Aunt is helping to cover the cost, and the rest of the money is coming from our Christmas cash. Frank and Kate knew I’d be devastated if I lost the piano and both thought this was worth it. I love them so much.

life...

So since it has been a while since my last blog I'll give you the dirt on what has happened since then!

~ The adoption day came, and despite being emotional it was my husband who told a story that made everyone cry. For once...it wasn't me!!! ;o)

~ My husband and I celebrated our 11th aniversary on the 22nd of August. We went on a weekend trip to Washington DC. Kate came with us, we always celebrate our anniversary with her.

~ My brother Pete turned 28 on the 23rd! He is doing well, I think. I always worry that he isn't. I guess that's the big sister in me. We are having Pete over this coming Friday for a birthday dinner! No matter how old he gets he'll still be my little brother, even if he is taller than me!

~ Kate is getting ready to start school next week and she is really excited about it! She went school shopping with her Nana and she had to get clothing from the juniors section...my little girl isn't so little anymore!



All in all this past week has been good, I had a NIH visit last Wednesday and my PFT's went up to 82% (FEV1) They were very concerned they would continue to trend down because of my inability to exercise lately. YAY!

The cold hard truth...

So tonight I was writing an email to my Aunt Wanda to kinda give her a quick update on my family and stuff. Told her about Kate wearing a size 8 shoe, being 13 and already an inch taller than me, and the parental rights termination hearing....when I realized for the first time...

My Grandmother will not be at the adoption hearing. She won't be able to tell the judge that I am a good mom, that I have been a good mom since day 1...she'll only get to look at pictures. This is something she wanted to see so badly. She and my Grandfather. He passed away earlier this year and I came to terms with the idea that he would never see it. But I had somehow managed to *not* think about how much it meant to me that she wanted to be there; to see it.

So tonight, because this is all I can think about. Because I can't stop crying, and because I love them all I will share a secret. I know what suffering is. It's not what you think...it isn't what I thought...

My Mom's Mom, Grandma--she passed away in 1995. Pre-Kate...I know had she gotten to meet Kate she would have loved her.
My Mom's Dad, Grandfather--passed away when Kate was younger. He and Kate got along great. He started her collecting dolls and coins! Back then we had no idea how badly things would go down hill with Kate's birthmother. I had always wanted to adopt Kate, but her BM was in the picture back then...trying to be Kate's mom...just not trying very hard...
My Dad's Dad, GrandDaddy--I never met him. He died in a plan crash when my dad was a boy. I often wonder if he'd be proud of me, if he would approve of Frank...but I *know* he would have loved Kate.
My Dad's Step Father--GrandDonald--He adored Kate! He was tickled when he heard about the plan for adoption. I only wish this was done sooner for his sake...Kate was devistated when he passed. She missed a whole week of school and we just couldn't believe he was gone. Some days I forget.
My Dad's Mom, Grandmommy--The only Great Grandmother on my side that Kate got to meet. She had a massive stroke a few years ago....the adoption was going to be a surprise but we told her. We wanted her to have something to look forward to. But we know now that she is not coming home. She is paralyzed on her right side, she's unable to speak or eat...
Her husband GrandDonald passed while she was stuck in that nursing home...

You know when I found out about my CF and then about the mitochondrial mutations...when they told me the odds of making it to 4o...with my motor functions in tact...I cried and I couldn't understand why I was the sick one. Why I had to suffer...but life went on. I dealt with it. But when she had the stroke I learned what it was to truly suffer. It is watching someone you love suffer...to watch her try to move---to say something. Anything. Nothing. For the life of me I still can not figure out why this happened to her...

That is why from this night on...I will not cry for what CF or mitochondrial mutations will take from me, but for what they will take from every one I hold dear. Because I know how they feel watching me struggle.