Feeling discouraged.....

[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!!