About Me

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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Thursday, November 10, 2016

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.

Tuesday, July 5, 2016

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.

Friday, March 18, 2016

I'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.

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.

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?

Monday, October 19, 2015

Update fall of 2015

I 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.
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.

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.

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.

Wednesday, June 17, 2015

The Middle Aged and the Restless

About 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.

I called again a few days ago and they say she won't be back until September. SEPTEMBER.

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.

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.

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.

Friday, May 1, 2015

May is...

It's been a while, I've been busy and exhausted and busy again and exhausted again. (Rinse and repeat)

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!

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.

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.

I am more than CF.

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.

There are so money facets of me and cystic fibrosis is just one of them.

Wednesday, March 18, 2015

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.