I feel so discouraged

[PATCHES]

I just found out I will no longer be going back to NIH unless they have a trial I fit into. I do met the requirements for the MILES trial but I am a little hesitant about that, I have a 13 year old son yet to raise.
Anyhow, NIH felt like my saving grace. I do not know where to go now. They seemed like the only ones in my life that understood. I know I must find a Pulmo- . I have been becoming so tired and wore out a lot quicker these days and no one gets it. Why can't you or why are you sleeping again? How do you respond? I just needed to vent with others that can relate so I can remind myself you are there. What are some good morale boosters?

[SLester]

Patches, I totally understand what you are going through.  I was so filled with anger and hurt and all those emotions when I found out I wouldn't be going back, and even prior to that when I was told the studies were on hold. 

If you qualify for the MILES trial, I'd suggest giving it a try.  At least consider it, and weigh the pros and cons and decide what is best for you.

I even have a pulm, which has been very important so you should have one just in case you have any problems, but I don't even feel like scheduling an appointment for PFT's because there's nothing he can do anyway, so does it really matter anymore?

Some morale boosters: that's a tough one.  I guess just knowing that there is research continuing which will hopefully help us.  For me it's just that if I'm stable enough that they don't want to see me, I'm going to just keep going with my life and try to get myself in better shape and show everyone just what I can do! 

I've gotten tired of explaining the issues to people.  There are some who understand what I go through and some who don't and probably never will.  But don't feel bad because I sobbed like a little baby after I realized I wouldn't be going back. I felt abandoned.  Although that's not true, I have a huge support system, it's how I felt at the time.  Gradually it eased up and now I don't even think of it much.

[harbauma]

Your feelings are certainly understandable and something many of us experience since we are dealing with a disease unknown to so many-they just can't relate so they brush it off.  And..."you look so healthy!"

Where do you live?  If you are registered with the Foundation you should have received information about the Liaisons and the regional groups that have recently been formed.  You could contact your Liaison and perhaps find out about other LAM patients who might be willing to meet and talk.  I am the Liaison for my region and this will develop into an excellent source of support for patients.  You will likely be having a regional meeting in the next year.  6 of us recently met for brunch where I live and it was a very fun get-together.

As far as finding good pulmonary care, there are some LAM Clinics that are coming online in various parts of the country.  They will have people who are knowledgeable about LAM and who want to be involved in their care.  Maybe there will be one in your area.  I had 13 visits to NIH but know will rely on Jay Ryu at the Mayo Clinic, about 1.5 hours away.  I had already made a couple of visits previously.  Also, check with Sally Lamb at the Foundation-she may be able to tell you about physicians who have already treated other LAM patients.  No guarantee that it will be someone you will want to stay with but it is a good place to start.

I used to be on the Listserv and many find that to be a good source of support.  If you don't mind many e-mails a day that might be a place as well.  Others rely on communication with a few other LAM patients that they have come to know.  This Forum can also be of help and if more would participate it can be a great place without overloading our inboxes.

Next April if you are able you might want to consider attending LAMposium in Cincinnati.  It is a great place to gain understanding of LAM and support from others.  If finances are an issue there are scholarships that can contribute a significant amount towards helping to pay for your expenses.

Fatigue is definitely a recognized issue and is now listed as a key symptom of LAM.  What I have learned to do is to concentrate on what I can do, to pace myself to lessen the issue of fatigue and to try to focus less on myself and more on others.  If I stop thinking about it I feel better.  A regular program of exercise can make a huge difference in the fatigue factor.  I know it has made all the difference in how I feel.  It definitely seems to help.  I also have come to realize that there will be some who cannot or do not really want to understand our situation.  I decided that life was too short and too precious to spend time and energy on those who are toxic to my health. 

We have to become a bit selfish and focus our life and energies on those who care enough to understand and ignore those who don't.  It may sound harsh but our mental health is an important component in how we feel physically.  The Foundation does have brochures and other materials that you might want to get some copies of to pass out to those who do have questions.  I always carry a few in my purse to pass out if the topic comes up.

Let us know if there are any ways we can help.

Mary

[Em]

Patches,
We all get discouraged at times for different reasons.  I can usually find LAM support on listserv.  I also find that meditatin boosts my spirits.  Also some not so healthy things like chocolate and shopping.  I am just testing this forum so I'm hesitant to post to you here since I don't usually read this.  Please feel free to email me privately at ejmurphy1@comcast.net, or find me on the listserv.
Take care.
Hugs, Emma

[Team530T]

I watch tony robbins on youtube to cheer me up....

[Vega]

As far as finding a pulmonary doctor, I would try to find one that is nearby you who has studied or is interested in LAM and who is eager to help you and find solutions. It's great when you have a doctor who is eager and driven to help you rather than a doctor who just sees you.