7 WEEKS & COUNTING!

It's been 7 weeks since this all started. 7 weeks of not being able to breathe. 7 weeks of coughing so hard that I have torn several intercostals along with other unpleasantries I won't print. 7 weeks of laying in bed at night and listening to myself wheeze when I try to breathe. You know, late at night, when it's all quiet and I lay in bed - actually propped up by about 7 pillows to maximize breathing and minimize coughing and to ease the pain from the coughing injuries - I hear this sound that at first I thought to myself: "what is that funny noise?" Turns out it's me. It's that wheezing/whistling/gurgling sound I'm making as I try to breathe. 7 weeks.

The time is ticking by so slowly, agonizingly so, because I should be getting better by now. Some progress should be seen at this point. But there is insignificant improvement, if any, so I am all too aware of the passage of time and how long I have been suffering with this new disease.

The longer this goes on, the worse my IC gets too. As if coughing this hard for 7 weeks wasn't painful enough, my bladder doesn't think much of it either. I am using the Rescue Inhaler more than I should every day and we still need to use the Nebulizer every day too. Both should be getting used less and less as each days passes. 

I have another appointment this week with the Pulmonologist so we will see what he has to say. There are some other options that I may explore as well. I want to see what the Pulmonologist says on Thursday first. 

7 weeks and counting. By the time I see the doctor on Thursday, it will have been a full month since they admitted me to the hospital and just over 3 weeks since I've been home. I should be seeing more improvement by now. I'm frustrated, I admit. 

7 weeks and counting. Tick, Tick, Tick - or, rather - Wheeze, Wheeze, Cough, Cough!

INSIDIOUS!

in·sid·i·ous

: causing harm in a way that is gradual or not easily noticed

: of a disease :  developing so gradually as to be well established before becoming apparent

1. Most people with this insidious disease have no idea that they are infected.

So I’ve been thinking about how to write about what has happened to me over the course of the last 6+ weeks and all that comes to mind is the word “insidious”. Every time I met with a new doctor and answered all the questions they were asking about my symptoms - when they began, what did I notice first, did I have this or did I have that? All I can come up with is this was the most insidious attack because I had no warning. There were no early warning signs; no hints I was coming down with anything; no clues given to me to let me think something needed attention. I had no idea I was sick until I was so sick I needed to be admitted to the hospital. At least that’s how it seems to me.

I’m not exactly an unobservant patient. I think, especially since I’ve had to learn to live with IC, that I’m very aware of my body and what is going on with it. I think this is true of most chronically ill people. We have to learn to listen to our bodies and be on the lookout for flare ups or problems with our condition that need attention. 

But then there are things that are so small, that start out so subtle that we think it’s no big deal. So for me, when this long journey began, one day I was - for me - fine. My IC issues were ever present of course. But, I didn’t notice anything new starting to attack my body. Certainly, nothing that seemed significant. I didn’t feel “sick”. I didn’t have a cold; no sinus issues, no temperature, no reason to stop and truly take notice.

Insidious. When it’s staring the doctors in the face (the symptoms that is) and they can hear me wheezing, see me coughing so hard, long and intensely that I double over in agony because I've torn several intercostals, cannot breathe and require oxygen they know something is seriously wrong. Yet every single test kept coming back negative. That’s insidious. It’s there, they know I am sick and seriously so. But it’s not giving them a clear picture of what it is that’s attacking my body. 

It took time, but we finally got an answer to what the insidious disease that I am battling is: Obstructive Lung Disease/Adult Onset Asthma. We have no idea what triggered it and maybe we never will. That's OK; I'm just glad to have answers.

I don't know about you, but of course I've heard of Asthma. I know people with Asthma. They all seem to manage their condition well. I assumed once we knew what it was, I would start treatment and would begin to feel better right away. That one puff on my inhaler would bring instant relief. That's what the commercials would have you believe. It's easy to treat. It's not that serious. It's "only" Asthma. I should know better. How often do we, as IC patients, talk about people not understanding what we're dealing with. How often do we complain that people do not take us seriously? That if they don't have it, they don't get it. I will confess to being more ignorant about this than I care to admit.

But here's the thing: Asthma is a lifelong disease that causes wheezing, breathlessness, chest tightness, and coughing. It can limit a person’s quality of life. It has changed my life dramatically - and forever.

The doctor didn't come into my hospital room and nonchalantly just say "you have Asthma; here's your inhaler; you can go home." He sat down for a very serious conversation and said "you have Obstructive Lung Disease". He explained that means it could be one of several different types and what those are: among them COPD, Emphysema and Asthma. He told me that even though the Chest CT Scan diagnosis was COPD, I have no risk factors to explain getting that, so he believed I have Adult Onset Asthma. We had a long conversation about how to treat this very serious attack and then how to move forward once it was under control.

But first we have to get it under control. We're still working on that. And I am making improvements. Inches at a time. Inches. Last Monday I saw the Pulmonologist again, one week after being discharged from the hospital. He is fantastic. They repeated the Pulmonary Function Test in his office and it proves Obstructive Lung Disease. He said my situation is like a huge forest fire and they are having more trouble than usual putting the fire out so that they can get me to a "maintenance" place. It will probably take longer than I would like. My doctor said I had gotten so bad that it will take that much longer to get it under control. The big mystery is WHY; Adult Onset Asthma usually has some trigger and we cannot figure out a trigger. So again - insidious. It's just very strange and he admits the WHY is something we may never know. But now we know WHAT and can treat it. He takes this very seriously. I have a bunch of meds to take and a plan in place for now, but this is another disease that I will have to manage for the rest of my life. Right now, getting the "fire" put out and just being able to treat it with maintenance meds is our goal. I see him again next week.

I have a long road ahead of me.  The coughing has improved a lot but it’s not gone yet and when I do cough, I just re-injure the torn intercostals and that is agony. Even after we get this under control (please let’s get this under control), I will have a lot of work to do toward regaining my strength and learning to live with yet another chronic, incurable disease and more medications. This will require a coordinated effort between my Primary Care, my new Pulmonologist, my Cardiologist (all the treatments for this have exacerbated my heart issue), my Neurologist and my IC doctor. Everyone needs to be on the same page!

I will have lots to talk about in therapy and am looking forward to seeing my psychologist in the new year to begin working on how to deal with all of this. I am not embarrassed to admit this has been a rough go.

We take so much for granted like breathing. Not being able to breathe for 6 weeks is a long time; it's scary and it's painful. 

I began this with one word: Insidious. This was a sneak attack that I was not prepared for. It set us back further than we would have liked and on the defensive trying to come from behind to try to get things under control. We are inching our way toward a better place. I was so unprepared. 

This is a story without an ending. It is really the beginning of another new reality for me. There is so much ahead of me, but I am blessed with a loving and supportive family who is going above and beyond to help and support me. I do not take it for granted. I am blessed and love them all so much. 

I want to thank everyone for the messages of support and encouragement sent to me. Thank you all for letting me know you are thinking of me and that you care. Thank You all!

I'LL HAVE TO GET BACK TO YOU!

I know many of you who follow my Blog know that I was in the hospital earlier this month for 8 days. I am home recuperating but nowhere near where I (or the doctor) would have hoped I would be at this point.

I wish I could take the time to tell you all my story, what I've been through, what I am still going through, my treatment plan and how I feel about this new addition to my IC challenges. But every time I pick up my laptop to write about this experience, I just end up closing it and putting it away. I am not ready to write about it and I also simply do not have the strength to write through the pain, or even stay awake.

I want to share this story with my loyal followers but it will have to wait until I am feeling better than I am at this point. I know you will all understand. 

This is what my days consist of since coming home from the hospital. 

All The Meds!

BRINGING ME SOME HOLIDAY CHEER!

I have the most wonderful family in the world! That's just all there is to it. During these past 5 weeks while I have battled this new medical challenge, they have come together to offer help, look after my Dad, run errands, bring us meals and so much more! It just makes my heart so full and I do not take it for granted.

This being the Christmas season, and me still quite sick, my ability to get in the spirit of things, participate or even do anything is, well, non-existent. But that hasn't stopped my family. They are bringing the Holiday Cheer to me.

As I posted previously, last week when I got home from 8 days in the hospital, they had purchased a tree, set up and put the lights on. But it's been waiting to be decorated. Last night was to be the night. My brother, sister-in-law and niece were coming over for dinner and after that they would decorate the tree.

Well, I was having a very rough time of it right at dinner, so I never did get any dinner and my pain was through the roof and I was in tears. But my Mom and brother came upstairs, gently, lovingly, encouraged me to come downstairs. They had a place all set up for me in a comfy chair, with a foot rest, a nice warm throw and even put the Santa Hat on me to keep me warm, yet festive! Slowly, very slowly, they got me downstairs, helped me get as comfortable as possible in the chair and turned on Christmas music and they all started decorating our tree! 

Just to be able to be there, be part of it, be included lifted my spirits. This is what we, in our family, like to call "A.I.O." (Adapt, Improvise & Overcome!) and that's exactly what we did. I know so often we all talk about how things like this "ruin" our ability to enjoy special events and so forth. I truly didn't think I could be part of this and yet, my family put their heads together, took into account what I needed but that just being there to watch them all decorate the tree would be good for my spirits. They were right! They were all laughing, we played our favorite carols, they brought the box of ornaments over to me and asked me which ones I wanted included. It was SO special. We have definitely gone minimal this year because of how sick I am, but that's not the point. We aren't letting it get in the way; we're just finding work arounds. And I'm not even having to think of how to do them; my family is being pro-active in finding ways to make sure I enjoy Christmas as much as possible. 

I love my Family! Thank you for your love, support & encouragement!

Me Watching the Tree Decorating!

HOME FROM THE HOSPITAL!

I just wanted to give a quick report for those that may not have seen my posts on Facebook that I am home from the Hospital after 8 very long days.

Yesterday ended up going downhill fast, but it was my first day home from the hospital. Got the Nebulizer and started treatments at home with all the other meds. I am in so much pain from so many pulled muscles from all the coughing I don't have words to describe it.

That said, I MAY have found a trick to help with the side effects of the Nebulizer; it makes my heart race terribly and I already have a heart issue so I've started taking both my heart meds and anti-seizure meds about half hour before the Nebulizer and, while I still get a racing heart, it's not AS bad as it was when I didn't do that. I talked to my Neuro yesterday and he also gave me permission to take an extra anti-seizure pill during these treatments to help relax me. I am hopeful this will mitigate the side effects of the Nebulizer treatments. I had an awful evening but then ended up actually sleeping better last night than since this whole thing began. MAYBE a turning point?? One night does not a trend make so we shall see. But it was certainly desperately needed. I may have overdone it yesterday too by being online too long etc. My body is nowhere near "better" yet and I am so exhausted I didn't think it could get worse. This is a real challenge and I confess to several mini meltdowns. But thanks to my loving family and Mom, I will keep forging ahead.

I will try to keep everyone posted and up to date as I go through my recovery and this new medical challenge that has been added to my IC. Most of us have multiple conditions with which we have to deal - I already had more than IC. But this is really taking a toll I did not think possible. It is a marathon as I said the other day. I will have to work on patience. I've used my meditation and that helps. Think I've devised a few tricks to help minimize side effects of the Nebulizer treatments and called my psychologist and asked her to call me. I will do all I can to cope and move forward.

Thank you so much for your kind concern and words of encouragement from everyone! It means a lot!

All the Beautiful Flowers Sent to Me!

HOSPITAL UPDATE!

Well, arrived here on Monday, December 2nd and here it is Saturday, December 7th. Who would have thought. Certainly not me when we left the house on Monday, that's for sure! But this is definitely a more serious lung condition than I ever could have guessed and the doctors are taking it very seriously.  In fact, I just got back to my room from having to have a Chest CT scan with contrast.  The Pulmonary Function test showed I have some sort of Obstructive Lung Disease - but what kind? They were thinking asthma but still want more information. I will hope to hear about the CT today from the doctors if they saw anything that sheds more light on this issue.

As many IC patients know, die contrast is not a friend to our bladders. The minute they injected it, my bladder felt it! I will have to go self-cath as soon as I finish this post. My medical team here at the hospital is working SO hard to get me what I need for an instillation but it's proving - for reasons not one person can understand - difficult to get the meds. My Urogynecologist has spoken with my Hospitalist and put through the order but the hospital pharmacy won't fill it. I have some ticked off doctors here, let me tell you! In the meantime, the Hospitalist promised me some Lidocaine gel so I can use that topically on my urethra. It helps me with the urethra pain so it would be SOMETHING to help and I'll take whatever I can get.

So at least one more night in the hospital. I'm not optimistic about discharge tomorrow; thinking it might be more like Monday but we shall see. What will be will be. Just wanting answers so we can put together a treatment plan. After so many years as an IC patient and a Patient Advocate, I can tell you I am asking questions, checking everything before I let them give me anything but no one minds and every single staff person (doctors, nurses, nursing assistants, etc.) are all wonderful and helpful and doing all they can to accommodate me and work with me. I am truly grateful to be in such an excellent hospital.

TONS OF SUPPORT!

I wanted to let everyone know that, as I have been in the hospital all week, the love, encouragement and support that I have received from my family, friends, IC Support Group family and my IC online Community has been amazing! I feel the hugs coming to me across the internet and it warms my heart and keeps me strong.

The never ending messages of support and encouragement have simply brought me to tears. To have so many sending me their prayers and messages of support means the world to me and I thank each and every single one of you for your support.

Special mention to my Local Support Group ladies. One gal pal from my Local Support Group stopped by last night to visit and it truly lifted my spirits (thank you Susan)! She is a joy and a dear friend and it meant the world to me that she came by! Today, another gal from Group came by with some beautiful flowers and spent some quality time making me laugh, and then of course cough (thank you Jenn). But again, it did my spirits a world of good and I am grateful. My Support Group Leader has been in constant contact via email and never forgets to follow up and ask how I am doing. I have several other Support Group friends who do the same. Contacting me online daily to see how I am. I have a fantastic group of friends that I have made from having this awful disease. And each of them has put aside their own pain to ask after me and offer support and help!

I am truly grateful for all these words of support and you have all done wonders for my spirits and are helping to support me through this! THANK YOU!

Beautiful Seasonal Flowers from my gal pal from Support Group! Thank you Jenn!

WE FINALLY HAVE A DIAGNOSIS!

As many of you know, I have been in the Hospital since Monday suffering from a SEVERE and non-productive cough for nearly 4 weeks now. It has been brutal and I am in a lot of pain from coughing so much (I know have pulled a few muscles). My bladder doesn't approve either! I have had every test in the book and they have ruled out everything viral/bacterial/pneumonia - like and removed the isolation restrictions yesterday so we knew it was nothing contagious. But what the heck is this?

Well the word is back. Obstructive Lung Disease - severe asthma. I need to stay in the hospital 24-48 hours more while they try IV steroids (oh joy) to see if I get any better. If I do, then they'll send me home with self care meds etc. If I'm not better, the doctor said he'd do a chest ct scan. One step at a time though. I also had a Swallow Test and definitely have a problem there and the Pulmonologist has no idea if that and the lung disease have anything to do with each other or not. But that is also something we need to see if we can fix.

I really like this Pulmonologist; everyone here at the hospital says he's brilliant and works on complex cases and solves them all the time. So to have him smile at me and tell me that he is very puzzled by me made me laugh. I told him - literally, you are not the first doctor to tell me that! Here's hoping the treatments start working! But I'll be here at minimum one more day, likely 2 as the doctor wants to see more improvement in my cough and breathing.

And I am here to say that not all hospitals are created equal. I am blessed to be at one the Top 100 Hospitals in the Country and the care is amazing! My nurses have all been so helpful and kind. Going out of their way to help me with my IC problems while here. As you all know, being hooked up to an IV with IC is no fun! The nurse got them to agree to disconnect the IV yesterday, called my Urogynecologist's office who sent his P.A. over to my hospital room to give me an instillation. This has been a real life saver for me and helped cut down on the increase in IC symptoms I was experiencing. I am so grateful for everyone's care and concern and the extra lengths they have all gone to in helping me with my IC special needs! I know so often we talk about bad experiences, but I believe when something so good happens it deserves recognition. I cannot say how much this has eased what has been a very challenging and painful time for me.
 — at Advocate Lutheran General Hospital.

Beautiful Flowers sent to me by my Big Brother and his wife and family! So lovely and really brightened my day!

I'M IN THE HOSPITAL AND IT'S NOT EVEN MY IC!

Well, this is a first. I can't even count the number of times since being diagnosed with IC that I have had to spend the night in the hospital. It's a lot. Usually due to one of my InterStim surgeries. Most patients go home the same day from InterStim surgery, but I am not most patients and nothing with me happens as it "usually" would with other patients. So, everytime I have anything done I spend the night in the hospital due to severe side effects from sedation etc.

Well, this time I'm in the hospital and it's not even my IC. This is very strange indeed! As many of my followers know, I've been battling what we believed to be some sort of upper respiratory infection or bronchitis. But after 3 weeks and all the appropriate treatments, I am no better. I fact, I have gotten progressively worse. Coughing so hard I've pulled a muscle - or two - and hurt so bad I feel like someone has been using my chest and abdoment as a punching bag for 3 weeks. It HURTS! And I'm sure you can appreciate how much my bladder is enjoying all this as well - NOT!

We called my Primary Care Doctor yesterday early and when he heard how bad I was, his instructions were to go straight to the emergency room and get admitted to the hospital that way. So my Sainted Mother gathers me and off we go to my favorite hospital. We got to the E.R. around 11AM on Monday and, as I was doubled over coughing so hard I could not breathe, they took me to a room immediately. At least I was spare the dreaded E.R. "Wating Room". I was given an EKG right away and made comfortable while I waited for a doctor. Well, that did take about 3 hours before I finally saw the first doctor, who made sure I was sent back into the "official" E.R. I was in some holding area it seems. 

Anyway, I have seen something like 6 doctors, had nasal swabs (if you've never had one, they are NOT fun. I thought they were going to hit brain tissue they went so far up my nose!) Another chest X-Ray was ordered. I was given several breathing treatments and oxygen which helped. But all the doctors and everyone here at the hospital have been amazing. They have taken this very seriously, want to figure out what is going on and never treated me like - "oh she just has a cough" at all! 

I have had A LOT of medical history to explain and have patiently gone over the complex medical issues that make up my medical history quite a few times. Every doctor and nurse I have spoken with may never have heard of IC, but they all took it seriously, allowed me to explain and not once was it brushed off as unimportant.

When I finally got admitted to a room (around 5PM by now!), I explained I would need some catheters because here's the thing. You get hooked up to an I.V. and you need to pee!!! And of course, I never fully empty my bladder because of my retention. Well it took quite a long time to track down some 10French catheters but they did it. The nurses on the floor never gave up, listened to me when I told them how much pain I was in since I wasn't emptying completely. They even did an ultrasound to see how much post voiding residual was in my bladder and I think thet were surprised by how much it was. I got the catheters and lubricant, gloves and was allowed to self-catheterize myself and take care of my situation. Insant relief. I as able to sleep for a few hours and that was great. Just did it again. I cannot say how helpful the nurses have been in working with me to accommodate my special IC needs! And that's not even why I'm in the hospital!

They are running test after test trying to figure out what's wrong with me; the vampires have visited regularly! Waiting on results of nasal swabs. And that's good. I am actually glad I agreed to come to the hospital. Whatever is wrong with me needs to be figured out and while being in the hospital is never any fun, sometimes it's a necessary thing to do.

It's just so strange for me to be in this hospital - that I have been in so very many times - and it has nothing to do with my IC! Let's just hope we get some answers soon!