Tracie Update

[Guest guest]

As most of you know, I've been MIA for a couple of months now. I ended up with a

serious lung and bronchial infection-- and a collapsed lung. The lung has been collapsed for a long time-- I think it was last year about this time when I found that I could no longer even walk thru the grocery store without being severely winded. It was literally an overnight change.

I live in No. California, and was within 2 miles of some of the worst forest fires this state has seen. For all of last summer, we had all our important documents and pictures and such-- in the trunk of my car, and were ready to evacuate if we had needed to. Fortunately for us, the evacs stopped on the other side of main road coming to our home-- less than 1/2 mile away. The smoke did not clear until November. With pulm sarc-- that was the worst that could happen. My lungs couldn't handle it.

When my lung collapsed, and the bronchitis set in-- we actually figured it was the inflammation from the poor air quality- and the xrays did not show the collapsed lung.

I found myself in the ER 3 times and each time a new xray was taken. The lobe that collapsed had actually folded over and back under itself, and so the view wasn't confirming why I was struggling the way I was.

Finally, about 2 months ago- I went again to another facility and the xray was taken at a slightly different angle, and low and behold-- we found the problem. I ended up on Levaquin for 21 days, and then Rocephin injections for 3 days.

I had to discontinue my Remicade and Methotrexate for 10 weeks, and found out just how effective that the Remicade is for me. By the 8th week, my brain fog was back with a venegence, I again was losing the ability to problem solve, I couldn't breathe and had to go onto prednisone bursts to try to get the lungs settled down-- and the "inside" the bone pain was back. I also found myself "flying off the handle and leveling those I love for daring to be in my world while I was under the influence of prednisone. It was not pretty....

As soon as I was able to finally get back on my Remicade, I was able to stop the pred burst (it was a 40,30, 20, 10mg over 4 days multiple times) and just use my breathing machine and Mucinex. My brain fog has cleared somewhat, and that bone pain is much better.

The challenge has been that having fought the lung issues for so long, that my heart is more compromised and the pulmonary hypertension is worse. I also have 3 heart valves that are stenosed and showing signs of regurgitation.

I don't want lung or heart transplant, and the local docs don't even want to consider it. Sarc generally comes back in transplants, and I'm to far compromised to handle the surgery.

The challenge is that my exhaustion and fatigue levels are through the roof-- and sleeping 12-16 hrs a day is not uncommon. Just yesterday, I went to the local Dollar Store to help find some containers for apple juice and just walking thru these small stores was too much. had left my scooter home, as this stop was an "after-thought."

I keep thinking that I will fight my way back and regain some strength, and I'm not willing to give up that thought yet.

For me, the saving grace of all this is that I've learned and continue to learn that there are small things I can do to make this time as good as possible. I know that if I give in and junk food out, that I will hurt-- alot. If I get lazy and don't drink enough fluids-- the pain is nasty. I know that my neuropathy will hammer me into the ground if I go on a sugar binge-- and in a large part it is diabetic neuropathy. Also, if my blood sugar is high-- my vision is junk.

I have been working on these issues, and had better luck with making the changes to my diet, than I ever had taking huge doses of pain meds.

I'm not even tackling the fitness issue, right now any aerobic exercise would kill me. My lungs can't get the oxygen to my heart and so with pulmonary hypertension the chances of a blood clot forming either in the lungs or in the vessel that goes from the lungs to the heart narrows to handle the extra demands that exercise would require, makes it a real tightrope walk.

I'm online right now because I know that Marla's husband just had a heart attack and needs her energy to help him at this time. Rose is still having and needing some down time, and Deb is recovering from vacation. Darlene is still struggling with a bad elbow, and is needed by her family to cover all the bases their lives require. is also balancing her life and sarcoidosis and has found a comfortable place in accepting and moving on to different areas.

These ladies make up your moderators and ownership of this group and we tagteam and step up when one or more of us is in crisis. We know have 600 members, so it is so important that we all help teach each other about this disease and the options. I know that right now a day or two may go by without one of us being online.

I ask that those of you that know or can help others navigate their way into the MESSAGE ARCHIVES AND THE LINKS section-- feel free to do so. Most of the topics that come up have been addressed previously, and you can search the Message Archives by topic.

Darlene and I are communicating online as we can, and we are both aware of the needs of the moderators, so one of us will pick up the slack as needed.

I do ask hat you keep all of us in your prayers and thoughts, and that for those of you that have found success in using this site to learn about your disease, spread the word. Do use caution in giving out medical information-- and when possible, refer to the ARCHIVES. Misinformation could cost someone their life or vision. The info in the ARCHIVES generally has come from medical articles that we've researched-- and isn't meant to replace your relationship with your docs. None of us are doctors, and so we do rely on these articles so that we don't put you in dangers way.

Greg, Connie, thank you so very much for being there for so many of the newbies. It has not gone unnoticed.

To Darlene and all the wonderful moderators-- I'm not really back yet, and you know how much you are appreciated.

To all,

A HUGE (((((((((((((((((((((((( GROUP )))))))))))))))))))) HUG,

Tracie

NS Co-owner/moderator