Feeling discouraged.....

[BookNut]

I am usually pretty upbeat. But I guess my "asthma-like"disease/chronic bronchitis/COPD/bronchiectasis/chronic non-allergic rhino-sinusitis/ (whew) is finally getting me down! I have seen 8 specialists total, though am now down to 3 specialists and a primary care. I have been off prednisone for a week, but now have come down with something that has made me lose my voice and feel even more tired than usual.I usually get about two weeks of feeling pretty good after I stop the pred....so I feel cheated. It didn't help that my visit with my PCP last Tuesday was somewhat discouraging.

The Good News:

I already shared that my good cholesterol and triglycerides are MUCH improved because of my change in diet.

I've just started a new regimen....steroid nasal rinse 2x per day and inhaled steroid twice a day.....plus gargling and using a flutter valve.

The Bad News:

The new regimen takes SO MUCH TIME. I know. What a whiny baby I am!

My doctor listened to my lungs (before looking at my lab results) and said, "You sound terrible. Are you ready to change your diet yet?". When I told her I had been following the diet since November she looked at the labs and it was obvious because of the wildly improved HDL and triglycerides. I also let her know that the wheezing was actually better than most days...but it is always there when I breathe deep ...24/7/365. Nothing, not even prednisone, makes it go away.

When I made the comment that my attitude was "There are worse things to have", she said "Yes...but this is pretty bad. You are too young to be on prednisone so often."

But this is REALLY freaking me out. Although my glucose level dropped significantly from my last visit, two other tests put me in the pre-diabetic stage! I am trying not be too worried about it. I have cut out virtually all sugar in all forms already. I am hoping the labs are being skewed by being on prednisone 5-6 times since the last labs.

My doctor said at the end of the appointment...."All these doctors, and none of us has done you any good. What a sad comment on modern medicine!"

I am tired of constant coughing, wheezing and nose-blowing. But i remind myself that the more days I can be off prednisone without being short of breath, the better.

I guess my doctor being discouraged has really affected me. Generally, she is very upbeat and supportive, but maybe she was having a bad day.

Anyway...you who are all so brave...please excuse my whiny-baby act, and thank you for wading through all this!

[windchime]

Jacquie I'm sorry you are going through this. It certainly makes sense that you are worn down given what you are going through. Try to concentrate on the good things you've accomplished. Better cholesterol results, yay.

What are your glucose levels and how long ago were your labs? The pred will affect them of course and I'm going to guess that you have to be off them a couple of weeks before it shows up in the labs. With the lung diseases that you are dealing with, other than the obvious ones, is there a specific reason you don't want to be on any pred? It's unfortunate, but sometimes pred is a necessary evil to control/maintain the disease process.

I'm sorry that your doctor made that statement to you at the end of your visit. I personally think it was an unprofessional remark and should never have been made to a patient. What does your pulmy think of everything and when was the last time you had a chest ct? Maybe it's time for one again to see what's going on in there. I've learned personally that if they can't figure out what's wrong they label it asthma. Hate it when they do that.

You are not whining, but just venting your frustration with everything. That's okay to do, we all do it at some point. We're here for you Jacquie, here is a big virtual hug coming your way. :hug2:

[BookNut]

Thanks Windchime. I will think of the happy sound of wind chimes when I do my Yoga routine a little later.

I do think the pred was still in my system when I had the labs done about three days after my last pill. I guess I would really like to avoid taking the pred for a good part of the year at least because of the long term side effects. Short term they are not too bad, but they do interfere with my sleep and make my thinking muddled.

Through a conversation my doctor and I have had about possible toxins in my neighborhood, I discovered that she started her career as a toxicologist working for the pharmaceutical business. I think that is at the root of her discouragement with the state of modern medicine. Her web page provides this description: "Dr. XXX is Board Certified in Family Medicine, and in Integrative and Holistic Medicine. Her experience working in both the Chemical and Pharmaceutical Industries, has significantly influenced her practice of medicine. Not confined to the conventional medical paradigm, she believes that the best medicine is an integration of the best that all practices have to offer." I started with her when she was in a more traditional practice. Osteoporosis had just been identified. She put me on a regimen of walking, calcium and large doses of vitamin D, and the osteoporosis improved greatly. Now she is in a more holistic practice, but she still regularly prescribes traditional medicines. For instance, she prescribed most of my current asthma meds.

A chest CT is probably a good idea. I think it has been over a year. I see my pulmy in July. I know what you mean about the asthma thing. My asthma/allergy specialist refers to it as my asthma-like illness. She is a bulldog. She pesters my other two specialists to do procedures/tests to find better treatments, But basically, she ends up apologizing to me saying that "what you have is the least understood of all the sinus diseases."

I will keep focusing on the fact that being on prednisone is not the worst thing in the world, and maybe my new regimen will work. I am also interested in trying a real old-timey medicine called theophyline. It is rarely prescribed anymore. My husband has severe asthma (started when he was 16) and he takes it every day. Younger doctors tend to forget about it.

I will keep thinking of wind chimes!! Thanks for the boost and the ideas.

[Jaypfei]

Hi Jacquie,

I'm sorry that you're feeling miserable after having stopped pred. I know this May sound strange, but have you been checked for Churg-Strauss? A gal that flies at the field with my husband started having many of the same symptoms that I had, and when my hubby asked if she had been tested for AI diseases she said she had not. Long story short, she spoke with her PC and they finally did check her for Wegs, but as it turned out she had Churg-Strauss. Most all CS patients have asthma. Just a thought. I do hope that your doctor gets it sorted out and hope you feel better soon.

[BookNut]

Thank you, Jaypfel! I will definitely bring it up at my next appt with my asthma-allergy specialist. I was once diagnosed with Wegeners...but that was ruled out by a combination of lab test and a pulmonoscopy. I HAD come across Churg Satrauss in my research....but I do not have strong markers for allergic reactions, and that is one of the major indicators of CS. My form of sinusitis is technically called chronic NON-allergic rhinosinusitis. But still...I will definitely check when I go to the doctor.

One upside of the current downturn is that right now it doesn't feel like it will devolve into shortness of breath. Fingers crossed. I SO want to stay off the prednisone to avoid diabetes. I think taht is what is freaking me out the most right now.

Thanks for the suggestion. I will put it immediately on my ever-expanding list of questions!!!

[pberggren1]

I've been nebulizing for 2 hours now and still not done the first session of the day.

[windchime]

Funny you should mention theophylline. I was on it years ago. Recently my pulmy put me on it. Mostly cause he can't figure out what's causing the shortness of breath. It might be worth a try for you.

I can relate regarding the sinuses. I have chronic/allergic rhinitis also. Like clockwork my sinuses swell up between 6-9PM or 7-10PM somthing in that neighborhood. It only lasts for 3 hours, but has me totally baffled. I take my zyrtec in the evening, but I changed it to the evening because of the swelling and it hasn't made a difference. If I remember to rinse at about 4 or so it seems to help. I tell you all this so you know you aren't alone. Hang in there Jacquie maybe someone will get it right. :rolleyes1:

[BookNut]

Funny you should mention theophylline. I was on it years ago. Recently my pulmy put me on it. Mostly cause he can't figure out what's causing the shortness of breath. It might be worth a try for you.

I can relate regarding the sinuses. I have chronic/allergic rhinitis also. Like clockwork my sinuses swell up between 6-9PM or 7-10PM somthing in that neighborhood. It only lasts for 3 hours, but has me totally baffled. I take my zyrtec in the evening, but I changed it to the evening because of the swelling and it hasn't made a difference. If I remember to rinse at about 4 or so it seems to help. I tell you all this so you know you aren't alone. Hang in there Jacquie maybe someone will get it right. :rolleyes1:

Have you had allergy shots?? I have not, because Although I have sinusitis it is not allergic in. origin. But some folks find it helps.

[BookNut]

I've been nebulizing for 2 hours now and still not done the first session of the day.

Wow!! My husband has had severe asthma since he was 16. He has two nebulized meds, that he takes at various times depending on symptoms, sometimes at the same time. Even he doesn't take much more than an hour. Especially since he has switched to a better nebulizer.

I guess he and I can both be grateful that we are retired and have the time!

[pberggren1]

I mostly just nebulize saline I get from the hospital.

[windchime]

Have you had allergy shots?? I have not, because Although I have sinusitis it is not allergic in. origin. But some folks find it helps.

It seems to be allergic in nature. Allergy testing shows severe reactions to molds (25 varieties) and dust mites. Those are the worst. Then there are some lesser ones like trees, roach poop (gives me shivers.)

I was getting allergy shots when I started CTX. At that point I didn't see the point. One to build the immune system and the other is tearing it down. So I stopped them. I'm still on 13 mg of pred on a slow taper so maybe when I'm done I'll try it again. It is a very long and time consuming process. If it works it's great I suppose. Now that I'm not working I can at least fit my schedule to their, oh so limited one. That was also a problem. Shots from 9-4 on Tues and Thurs. with little flexibility.

Thanks for the reminder that I should pursue this again. I'm actually making an appointment with a new ENT doc sometime in the next month or so.

[Lilly]

Oh Jacquie......I am so sorry you are going through this, its so difficult at times when your Doctor gets stumped on what is going on with you, and that is extremely scary! Take your day or 2 and realize that you have the right to be upset and sad. For me, sometimes getting it out of my system, and knowing I DO have an illness that is complicated at times, helps me pick my self up and feel like fighting again. You mentioned getting tired of doing a regiman every day. I know EXACTLY HOW YOU FEEL!!!!! Its like 10 thousand times worse than having to shave your legs all the time, over and over your whole life!!!! It takes me 15 minutes to shower and put lotion on, etc. But then comes the nose/sinus cavity cleaning and adjusting my glass tubes in the corners of my eyes, trying to blow my nose without blowing those out! I clean my nose with irrigation and then I have to use about 25 Q tips to clean the best I can......It takes so long! You ARE NOT a Whiney Baby! I just know how it gets old fast. But we have to do it! :-( You mentioned your wheezing. I sometimes wheeze at nite, I don't know what causes it to come and go, but I actually recorded it on my phone so I could let my Dr hear it. I haven't seen him yet, but he is going to listen to me wheeze next time I go! (Im sure he will love that!) All you had to say in your post would get any of us down. I had a counselor one time that I explained to her that I would get so upset when I thought about this disease, and I felt so down and depressed that I will ALWAYS have it. And then I would think about people who have Cancer, the people who have other illnesses like Multible Sclerosis, and I feel totally guilty for feeling sorry for myself. And she told me that I NEED to feel sorry for myself sometimes. Just because others have worse or more serious illnesses, does not make mine any less easier to live with. It IS a big deal. Once you admit that, Then you can be thankful for the good days that we have, and we are fortunate about some things. Its difficult in many ways, scary, uncertain. But we are Strong! We have to be! And YOU are TOO! I pray you are feeling better soon, and that the problems you are having will be rectified as soon as possible. Our lives are a roller coaster.......I LOVE roller coasters, but not the wegeners kind! LOL. Take care, give yourself a hug from me!....... :-)

[BookNut]

Thank you SO much Lily! Your post and your positive attitude really helped pick me up. The timing was perfect as I was in the midst of yet another problem.

My doctor just prescribed zythromax. She had done some research after I left and found that zythromax taken 3times a week has been proven to reduce the number of COPD exacerbations. I was excited to try it. So, I took the first pill at about noon yesterday. I was feeling pretty bad....but not yet at the "hospital bad" yet. I cooked bacon for BLTs for an easy dinner. I was out of the organic, nitrate free bacon that we always eat, and had bought regular bacon at the local quick mart. At about 6 pm, which was an hour after dinner and only 2hours after taking albuterol via nebulizer, I got significantly worse. I was SOB even just sitting still, with chest pain and pressure. Now I am not sure if the problem was caused by the zythromax or the nitrates in the bacon. So, I am afraid to take anymore zythromax. I go to my pulmy on Monday. He will give me guidance. I had. rough evening, but was able to go 3.5 hours till the next treatment. My yoga breathing pose helped. I am better this morning.

Anyway...your post really helped me. Your positive attitude is very uplifting, and I definitely need that right now. Thank you again!!