Monday, May 13, 2013

Trigger Point Injections.

In case you didn't know, CF is painful!  The pain can be from various things; arthritis, general inflammation, headaches from oxygen deprivation, and more.  If you know me or if you've been following my blog for a while you know about my crusade to get some relief from my chronic back pain.

Since I cough so much the muscles in my back are constantly being strained and pulled.  From my mid-back up I have many muscles that are constantly knotted up to the point that they pull my vertebrae out of alignment.  On a good day its just annoying.  On a terrible day its debilitating.  I've been to chiropractors, massage therapy, physical therapy, pain specialists, and acupuncture.  I've tried various medications that are usually prescribed for chronic pain.  Massage an acupuncture have been the most effective but they are expensive.  When I went on disability I couldn't afford them any more.

A few months ago my primary care doctor and I talked about trigger point injections.  I would have done it sooner but then I had two hospitalizations, did some house sitting, and moved.  Today I went to see her for my first trigger point injections.

TPJs are injections of either lidocaine and saline or lidocaine and steroids right into the knotted up muscles.  Then the fluid is massaged in to spread it out through the muscle.  I elected to have the lidocaine and steroids since my pain can be so severe and I'm not going to stop coughing any time soon.  Hopefully the steroids will reduce the inflammation in those muscles.

The injections themselves weren't bad at all.  I've had flu shots that hurt worse.  In a weird way it felt kind of good, that "hurts so good" feeling.  My doctor said that for some people there is little to no relief but that others will have spectacular results that last for months.  Right now the injection sites are sore from being jabbed with a needle (duh!), it feels like a bruise.  I'm hopeful that it will help though.  I've had some really good upper back and neck pops this afternoon and evening.  With any luck my spine is coming back into the correct alignment.

I'll keep you all posted on how this pans out.  I think it could be a wonderful solution to for people with chronic muscle pain, especially my cysters and fibros.  Its minimally invasive, not very painful, and the few potential side effects are minimal.

Thursday, May 9, 2013

May is Cystic Fibrosis Awareness Month!

Happy spring everyone!  I don't know about you but I'm ready for it!

As you may have gathered from the title of this post, May is CF Awareness Month!  I thought I'd do a few posts about CF in general, how it effects me, and what I think of it all.  First, some facts about CF.

  • Its the most common inherited disease, yet there are only about 60,000 people with it world wide.  Roughly 30,000 of those live in the United States.
  • About 90% of people who are carriers for the gene have no known family history of CF.
  • There are about 1800 genetic mutations known to cause CF and more are being found all the time.
  • The CF gene was identified in 1989.
  • When the Cystic Fibrosis Foundation (CFF was founded most children with CF did not love long enough to start school.  
  • The current life expectancy for CF patients in the United States is in the late 30s but there are many who are living well beyond that.
  • In my lifetime the average age of CF patients has doubled.
  • About 45% of CF patients in the US are over 18.
  • More than 70% of patients are diagnosed by age 2 thanks in large part to newborn screening which is mandatory in all 50 states.

Friday, April 19, 2013

Happy spring!

How's it going out there in internet land?

I had a rough March but things are settled now, so update time!  At the beginning of March I caught a cold.  I felt pretty crappy for a few days but it wasn't too bad, I thought.  It seemed like I never quite recovered.  I was really tired all the time and my back hurt terribly.  To top it off I was getting ready to move at the end of the month.  Since I wasn't feeling well though I just couldn't get much done toward that.

Around the 20th of the month I started feeling even worse.  I was having night sweats so bad that I was dehydrated and dizzy.  My BF brought me some Power Aid to get my electolites balanced out and that helped a little.  A few days later though I woke up very early in the morning, took a sip of Power Aid and instantly knew I was going to throw up.  I managed to make it to the bathroom though.  I crawled back in bed with an ice pack on my back and managed a few more hours of sleep. 

When I woke up again I had a sore throat.  That combined with the aches, and fever made me think I might have the flu.  I put in a call to my CF clinic and waited to hear back from them.  It was only about 20 minutes later though that I decided I couldn't wait.  I got in touch with my good friend N who works near my (now former) apartment and he came and took me to the ER. 

Every one in the ER treated me under the assumption that I had the flu, my symptoms were classic.  I was given fluids, which I needed badly, and Tamiflu before heading off for a chest xray.  When the xray came back my CF doctor came in to tell  me that I had a pretty bad pneumonia in my left lung.  It was the same lobe that collapsed almost 4 years ago and has never been right since.  It turns out I was on the verge of it collapsing again.  I think the virus I had a couple of week prior got the pneumonia started which is why I never really recovered.  In the ER they took cultures to check for the flu and RSV.  I asked to be admitted because I was in no shape to take care of myself at home alone.  The doc agreed to that.

N was nice enough to go back to my apartment and pick up my cat Savage and take him back home with him.  I was moving in with N and my other friend B at the end of the month anyway so it was the perfect place for him to go and I wouldn't have to worry about him.

The cultures came back negative for flu and RSV so I just had a cold on top of the pneumonia.  The combination of the two made it look and feel like the flu though.  So that was good news.  Once I got started on IV antibiotics I started feeling better very quickly.  I stayed in the hospital for 5 days and went home on IVs. 

I went to CF clinic about two and a half weeks after my admission.  My chest xray looked WAY better.  I saw the before and after and it was amazing.  Even the doctor was shocked at how much better it looked in such a short time.  Usually a pneumonia that severe takes a long time to clear up.  Even the one that collapsed my long took about 2 months to resolve.  I decided to continue IVs for another week because I still wasn't feeling quite back to baseline.

Now I'm feeling pretty good.  I'm not so tired but I am still coughing up a lot of junk so I know the pneumonia is hanging on a little but breaking up nicely. 

A week after I was admitted for the pneumonia I managed to sprain my ankle.  Uhg.  Just like me!  Luckily my BF was there when it happened and was able to take me in to the ER again.  I didn't think it was broken but I had badly sprained that ankle before so I wanted to make sure.  It wasn't broken but I did spend several days in a boot, then moved on to an air cast.  Its feeling pretty good now but I need to start some excersises to strengthen it.

My move was kind of hectic since I hadn't been able to prep as much as I wanted.  Thanks to my awesome friends though it got done and I am mostly settled in to my new place.  Savage was stressed until I got here but he has calmed down now.  There is another cat here only a little older than him and they act like brothers.  They love to play tag and wrestle.  They both sleep with me at night.

So, over all things are going great right now!  I hope the same is true for you.

Wednesday, March 6, 2013

You know what's pathetic?

When I have to drop bombs like “attorney” into a conversation with staff at a doctor’s office just to get a refill authorized!

Here’s the letter of bitching…er, complaint I sent to the hospital. Names have been changed to protect the stupid.

I am a long standing patient at the UWMC at several different clinics and departments. Generally speaking I don’t have any issues getting my medications refilled except through the neurology clinic. There have been several occassions when the normal 24-48 hours has taken closer to 96 hours, but I have let it slide because I always give myself plenty of time so that I won’t run out of my medication. However; I have been trying to get a refill for two weeks now. The only thing that has saved me from running out thus far is that I was in patient at the hospital for two weeks in January. Since the hospital was supplying all of my meds I had two weeks worth of overlap.

As is typical, when it was time to refill my meds and I was out of authorized refills my pharmacy sent a fax to the neurology clinic. They did not get a reply back after a few days so they sent another, then another. I called the clinic and emphasized the fact that I was now running out of my medication and I did not have 24-48 hours to wait. The person at the call center said she would pass the message along and be sure to let them know that this needed to be a priority. Today I recieved a voice mail from someone in the clinic named T who said that there was a problem with the phone number I had left for my pharmacy. However, when I talked to T later she said that she had spoken to my pharmacy. She said in the message, once again, that it would take up to 48 hours to process this. Since in the past I have had to allow up to 96 hours processing time you might understand that I was not comfortable with this answer.

I was able to speak to T again, and I do admit that I lost my temper. However, I feel that under the circumstances I am justified in being quite upset. She kept trying to tell me that I should have called my pharmacy before I got so close to running out of meds but then refused to listen to me when I said that I had talked to them several times and that this was not the first issue I have had getting refills authorized from this clinic. Also, what good is going to do for me to speak to the pharmacy when they have been trying to do their job but getting no response? Her out and out refusal to listen is what caused me to become upset with her.

I go to the neurology clinic for treatment and monitoring of my epilepsy. As with any medication that effects the brain chemistry, going cold turkey on my meds would likely cause me to have seizures. If that were to happen because this office was taking an inordinately long time to process refill requests I would not hessitate to contact an attorney. Then I would immediately start looking for a new neurology clinic to tranfer my care to. At this point I might just transfer my care anyway because I have enough stress in my life without having to deal with this hassle every few months. I would prefer not to do that because my doctors are wonderful, but the fact is that I have to deal with the staff more than the doctors and it isn’t worth this.

I have never had so many issues getting my medications through other clinics at UWMC. There is some kind of failure happening at the neurology clinic that is causing refill authorizations to take twice as long (or more) as any other department. I could safely miss a dose or two of any of my other medications, but this one I cannot. A neurology clinic should understand the importance of this better than most.

I would also like to address the fact that most clinics are now using the call center. While I understand that this system is probably much more efficient for scheduling appoints and general questions, when it comes to something urgent it just makes things harder. It means that there is one more person in the chain that the patient is counting on to get the details correct and pass the information on. While they are generally very good at what they do, they are human just like everyone else and they do make mistakes. I strongly feel that for certain departments that deal with more serious medical concerns, there needs to be a way for the patients to contact the clinic directly.

Friday, February 8, 2013

Long over due updates!

I know, I know.....bad Tadpole!  Things have been crazy.

The holidays were nuts this year.  I rarely had a day off from doing something or another.  There were parties, birthdays, dinners, movies, dates, and doctor's appointments (when is there NOT doctor's appointments?).  In the last week of December I started to wonder if I was pushing my luck and over doing things.  By New Year's Eve I knew I was.  I was exhausted, had no appetite, was spiking fevers, and short of breath.  Pretty standard stuff for me when I need IVs. 

So on January 2nd I checked myself into the hospital.  Normally I do my IVs at home from start to finish but I had to go in this time for a couple of reasons.  One: I simply did NOT have the energy to take care of myself on my own this time.  Since I live alone this is an issue.  Second: Medicare doesn't cover home IV antibiotic therapy.  Figure that one out.  They'd rather pay $1500 a day for two weeks just for me to have a room in the hospital (not counting meds, nurses, docs, tests, and food) than pay $3000 for the full two week course at home.  Uh....wut!? 

My primary care doc is on the team that sees CFers when they're in patient at my hospital (awesome!) so she was MY doc most of the time I was there.  She tried everything she could think of to get me out of there but in the end everything fell through so I had to stay the whole two weeks.  After the first 5 days though I got a day pass so that I could leave in the middle of the day.  This allowed me to take care of some errands myself and most importantly, come home to see my kitty! 

I had so many friends come see me while I was in, it was fantastic!  There were only one or two days that I didn't have any visitors.  There were a couple of days when I had five or six, at the same time!  How sweet is that!?  People brought me goodies, and stuff to do.  I seriously have the most amazing friends.

The day after I got out of the hospital I went to my friends' house to house/pet sit while they went on vacation.  This had been planned for months, I'm just glad I got out in time to keep my promise!  So, even though I wasn't at home, I wasn't in the hospital and Savage got to come with me.  So that was fine by me!  I mostly rested up from two weeks of crappy hospital sleeping while I was there.

Now I'm feeling really well.  I had a period where I felt very asthmatic for a while, but the air quality got kind of poor and that always messes me up.  I'm going to the CF clinic on Monday, and I'm eagerly awaiting my PFTs.  Oh yeah, I need to make a list of scrips I need.  Ah, screw it, I think I need them all!

Monday, December 17, 2012

This is how it feels....

.....when you get rejected because of your disease.

Dear Dude,

I’m going to apologize in advance for some of things I’m going to say.  The thing is; I’ve never had the chance to tell someone exactly how I feel about being rejected because of my disease.  I’m taking it.  I need to.  I really hope this doesn’t destroy a chance at friendship for us.  As hurt as I am right now I don’t hate you and never will.  I wanted to write this instead of tell you in person because with something intense writing just works better for me.

Right now I have this huge desire to just rage at you for rejecting me because of my CF.  I want to scream at you about being a poor excuse for a man, weak, uncaring, unfair, judgementle, and selfish.  Yes, I’m going to die before you, but so what?  Anyone who cared enough about me would rather be with me for however long I’m here than not at all.  

I’m even questioning whether or not you are capable of being my friend.  I need my friends, I need them absolutely.  When my health declines I will need support, shoulders to cry on, cheerleaders, listeners, and help doing simple tasks.  Can I count on you to be a part of that team?  You already told me that my death will be one of the most difficult things you’ll have to deal with.  This doesn’t instill me with confidence.  At this point in time I’ve lost a lot of respect for you. 
You said you don’t deal with death well.  Guess what, no one does.  It isn’t supposed to be easy.   It’s supposed to hurt.  In my adult life I’ve had to deal with the deaths of more than twenty loved ones, but even if I were given the option to go back and not become their friend to save myself the pain of their death, I wouldn’t do it.  I’m better because of them.  I will never distance myself from any of my CF friends who are still living.  I need them and they need me.  I went into these friendships knowing what could happen.  I’ll see more of them die, in the same way that I’ll die!  It’s like having a sick crystal ball.  Some of them will see me die, yet they don’t reject me.  If I can make it through more than twenty monumental losses and be whole, then you can make it through the handful you’ll have to deal with in your life.  The first man I ever loved died.  It was the worst thing that’s ever happened to me, it took me years to get over it, but I did.  I still love him dearly, but he wouldn’t want me to mourn him forever.  He’d want me to find someone else to be happy with, which is why I haven’t given up.
I meant it when I said that I understand this.  You have a choice about whether or not to take this on and how much.  This isn’t the first time this has happened to me, it probably won’t be the last.  No one wants to see someone they love suffer and die.  The thing is; there are no guarantees that you won’t be put into that situation with someone else.  The only difference is that I’m more aware of my mortality than most people.  What if you’re with someone for years and years who was perfectly healthy and then they get cancer?  Would you break up with them then?  

I wish there was a way that I could make you feel how I feel about this.  You have no idea what it’s like to be terrified of falling for someone and them falling for you because if it happens they will watch you die!  I don’t want to be responsible for causing that kind of pain.  Sometimes I think it would be better if I’m single forever.  At the same time I’m still human and I want someone to love me.  I want someone to love back.  CF has taken so much from me; the only career I ever wanted, kids, friends, my independence.  Every time it makes someone I care about run from me I just want to crawl in a hole and never come out.  It just isn’t fair that it should take away the one thing that would make me the most happy.  

I don’t wonder if things would be different if I didn’t have CF, there’s no point.  I have it and nothing will change that.  I think that you’re too analytical when it comes to matters of the heart.  Love isn’t an equation to be solved.  It isn’t logical, it makes no sense, it’s hard, often painful.  I don’t want to feel this way about you.  I don’t want or need a boyfriend who can’t handle the reality of my health.  But I can’t help it, just like you can’t help how you do or don’t feel about me.  I don’t expect this letter to change your mind about it.

Thank you for being honest with me when I asked you to tell me why I’m not right for you.  Knowing the real reasons will help me get past this faster.  I’m not going to rush into another relationship to try and get over you.   

I do still want to be your friend, but it will take time for this wound to heal.  I’ve learned a lot from you, because of you I’ve made tons of new friends.  I’m scared that if you and I aren’t friends anymore they won’t want anything to do with me.  Despite what I said at the beginning of this rant you have a lot of qualities that I do want in a man and having you in my life has made me more aware of those things.

Tuesday, November 27, 2012

Me, and life, and stuff!

Hello friends!

I just thought it was about time that I sat down and write a really good post about what's up in FrogLand. 

Tomorrow will be exactly six weeks since my hysterectomy.  I feel amazing!  For such an invasive surgery I have to say that the recovery has been pretty easy.  Can I tell you how amazing it is to not be in near constant abdominal pain (my back pain continues to be unceasing)?  A person can only deal with so much at a time and I was at my limit.  If anyone in the Seattle area is need of an astounding GYN surgeon I'll point you in the direction of mine!

My Thanksgiving was great, I hope yours was too (if you celebrate, I know I have some international followers).  I got to spend it will three good friends I already had, and made a few more.  E, you are an fantastic cook and I thank you again for having us over. 

I got to have a second Thanksgiving, or Friendsgiving, at D and E's (a different E) house.  There were 30-ish people there and TONS of amazing food.  It was a great time and I learned that I'm pretty good at the game Cards Against Humanity.  They are hosting a Giftmas party as well and I'm really looking forward to that!  Ugly sweaters and white elephants!

In health news other than the surgery; there is nothing new to report!  No news is good news right?  I'm hoping to make it through the winter without IVs since I ended up doing three rounds in six months this year.  I have a daily cough, of course, but that's nothing new.  I try to be religious about doing my treatments as I should.  Sometimes my back doesn't let me though. 

I could use some more money in my bank account, but who couldn't?  I realize now that once my lease is up on my apartment in the spring I will have to move.  As it stands now I'll be moving in with two of my best friends (I have like, 50 best friends but these two are at the top of the list), B and N.  They have a condo with an extra room.  The arrangement they are offering me would help all of us out immensely.  Its farther outside of Seattle than I would like, mostly due to the fact that I don't drive, but I have to do what I have to do.  As it stands right now if the cat needs to go to the vet (knock on wood) I'd be screwed.  So, thanks B and N for helping a broke frog out.  I've never been the type to care about having shiny new, fancy stuff, but a little bit of security would be a nice change.

I've been dating some, but I seem to be the perpetual victim of the guys who just drop off the face of the earth with no explanation.  I shouldn't say "victim" because I don't feel like a victim.  Yeah, its irritating, but in the end I don't need people like that in my life.  There is one guy that I'm interested in but I'm being patient with him.  I get the impression he needs to come to terms with some things and maybe learn some lessons about life and love before he moves on in the whole dating/relationship world.  I'm not waiting with bated breath, but I also refuse to settle for someone who is less of a man and wonderful human being than this guy is.  Either he will figure it out, or he won't and I will find someone who is just as sweet, funny, creative, and all those other things I look for in a partner/lover/companion.  If nothing else I have a friend for life, no matter what ends up happening I could never resent him or hate him.  He's never treated me badly, never made me feel bad about myself even unintentionally.  He's also made me hyper-aware of what I want and deserve.  He doesn't know that, but I thank him for it anyway!

Really, I guess I just want to say that life is awesome!  Its not perfect but, I'm so happy with the way things are going and what I see in my future.  Life would be boring if it was always perfect anyway!  I'm excited to spend the rest of the holidays with all of my friends, and for making new friends!