A Must Read: KATHY SPEAKS UP.

        Regular readers have noticed posts from Kathy, and here's the latest.  Please remember Kathy in your prayers.  Her quiet dignity is only evident when she speaks about herself and her condition; most of her posts are funny.  If you're lucky, as I am, you'll shoot her a note and get to know her.  If you'd like to send her an email send it c/o [email protected] and I'll be sure she gets it.  If it's private, please say so in the memo line.  God bless us all, Colin

PS. Thanks, Kath!

Dear Colin,
Share whatever you want of the following. I hope there are not too many typos.

I've been reading the posts and keeping everyone in my prayers during this last bit of time. I'm hoping Wanda is improving and we are all hanging in there. I have been struggling somewhat with my health and missing my father. It's been one year since his death and I'm echoing the normal refrain of, "I can't really believe he is gone." I know where he is and don't wish him back in his pain-filled body but am selfish enough to wish I could still talk to him face to face. I'm working on a post about him but it is slow going as the tears fall freely and frequently and typing is also hard and painful for me.

I've been having a great deal of difficulty breathing as it has been very hot and humid here. To top it all off our air conditioner died and apparently left a DNR  notice as part of its "advanced directive."  It could not be revived. We had to seek an expensive replacement. With my additional medicines we are really being pinched. I can tolerate being hot, sweaty, uncomfortable and irritable but the AC has become a necessity for me to have a chance of breathing when humidity is high, the air is still and there are air advisories out warning those with breathing difficulties to stay indoors.

I've finally had to admit that the breathing difficulties are probably not just my severe asthma but may be the LAM kicking in. Not being able to get my breath is terrifying and I struggle (ironic choice of a word) to stay calm. Pursed lip and abdominal  breathing, prayer, calming cognitive techniques and meditation are useful but don't help the oxygen intake and CO2 exchange as much as I would like and it is hard not to panic.

God is the only one keeping me steady. Having a disease that is both rare and yet grossly under diagnosed presents its own challenges. Do I take every opportunity to educate the many doctors I come in contact with? Do I speak out and try to tell others who may have the disease and don't know it? Do I try to continue political action for LAM and other orphan diseases? Does anyone else even care? Do I really bother with taking routine health measures when not much is known about the disease and here in Iowa and if I die today maybe not even an autopsy will help them learn just how I died? I try to just keep breathing and recognize only God knows how long I have to live. But, He really cares about what choices I make and how well I care for the body He gave me. I have to keep going for as long as HE wishes me to.

I try not to second guess myself with each sharp chest or abdominal pain. Is it a lung collapse? Chyle and fluid build up?  A ruptured blood vessel or further obstruction of my lymph system or just a blob bursting in my lungs as a cyst collapses?  I just pray it's not a lung collapse and try to rest for a while. The fatigue is so great sometimes. I know that is part of LAM  but think it could also be from many other things including just living the battle we all face in dealing with chronic pain. That daily battle is draining in and of itself.

As for the "regular" pain it continues in many places and I play little word games trying to find new ways to describe it just to distract myself.  I'm sure amongst all of us we could write a lengthy volume containing only descriptive words categorizing our pain. What is a normal level on a "good day" for most of us would drive many people to oblivion in short order. We've long surpassed the 1-10 pain scale, most of us exponentially, I imagine. My hand, wrists and arms have that strange combination of burning fire and numbness/unresponsiveness many have experience and some have described much more effectively than I. You know the appendages are there because they burn, itch, throb and seethe (the word I use when it seems as if the flames of the pain reach out and surely must be visible) but remain numb and somewhat unresponsive when I try to use them. Typing is a particular challenge  and I long for a voice activated typing program that really works.  In brief I'm doing what we are all doing and hanging in there. That is a choice we all make daily. I'm proud of all of us.

I could identify so easily with "Sarah" and found her post moving, disturbing and completely in line with what I experience. The inequities in the health care system are all too apparent when you have run out of options. People use distancing and disdain in an attempt to feel they will always be exempt form inadequate treatment. Considering how many people are just one paycheck away from the slide into poverty and loss of what ever health insurance they had "cornered" it is a short-sighted, foolish way to view others who have run out of time, money and options. It is a national disgrace we have allowed things to come to this stage. I don't know how to change it. I hope we can all come to our collective senses and figure a way out of this mess.

In the meantime, those who are more fortunate should at least keep those of us in the "less fortunate"  category in their hearts, prayers and forefronts of their minds. Being sick and disabled and trying to get even minimal health care takes much more time and effort than successfully accomplishing a full time job that counts as "work." (One you are too ill to work at.) Sarah you have done a great and touching job of voicing what facing those frustrations are like.

I may get to go to NIH in late July for the somewhat reinstated LAM basic protocol. I am grateful and terrified. How much do I want to know about how sick I am? None the less those of you who wrote your Senators and Representatives back in late Feb. and early March have the undying (bad pun) thanks of the LAM women who are suffering with this fatal disease. It made a great difference and while grossly cut, the LAM research will continue in a small form. What they learn about us is helping others with hormone driven cancers, diabetes and even atherosclerosis. Many of the cell proliferation mechanisms are interconnected. They have found insights into and treatments for other rare diseases while studying us. Maybe sometime they will find something to help "Lammies." Meanwhile we LAM women continue to be "lab rats" (since lam cells haven't been able to be grown in any lab animal.) I salute the bravery and persistence of my fellow LAM sisters. Keep us all in your prayers.

That's my update -- hurting, worrying but still breathing and loving with the grace of God.I'm thankful for the many years of love I've had, my husband, great kids and the life I'm given each day. Who needs food, freedom from pain or being able to breathe when I have those gifts? Actually I do but I'll take what God gives me. It's all His to give. Take care everyone. God bless.
Breathe in peace, Kathy S.