A wake up call from a dear friend..................

The following is from a very dear friend I have said here before I consider "my adoptive mom" who has been going through some tremendous health issues as well and yet finds the time to write me--it left me in tears.

Between this letter that follows and a conversation with a neighbor who sufferes from Celiacs Disease, who feels if I changed my diet, started exercsing and added extreme vitamin intake to my regimne of things I take it would change everything for me for the better.

So this morning I went and bought Centrum Silver, the neighbor gave me some mega dose vitamnis and recommended where to get more when I run out. She alos suggested a Glutten Free Diet. That latter one I want to investigate more before I overhaul my whole diet.

Dear Charlie:

I read your blog a few minutes ago and I was really shocked. Not so much at the degree to which you are suffering from the fatigue and all, but the attitude of the doctor. It seems as if she is telling you to give up and die.

I know you have a lot of problems and I know first hand how the daily fatigue and pain can make you wish you were "at peace" finally, but believe me there is more help out there........

Maybe between the Mayo clinic and a new drug you could get some of your stamina back? That and see a good neurologist for the neuropathy. They might have more answers too because they are a teaching hospital so they know the latest on all the therapies going on.

Charlie, I have days when I wonder why I'm fighting the tide so hard too. I wonder "is this all there is?" The answer is NO. This is not all there is, and life IS worth fighting for! Yes, some days I want to give up but there is a little light inside that is God speaking, telling me I have more to do, more to offer. You have these classes you worked so hard to get. If God wants you there he will see you through this.

He did not say it would be easy, but that He would be with us each step of the way! Remember that. I can't believe that this is all there is to your life and it's your time yet. You didn't outlive all those 600 and reach 40 just to say you did it. He has a plan and He, not the doctor will decide when it is time.

As for me, I'm going down swinging! I've told Larry and Jill when I go to write in my obituary that, "I went kicking and screaming!" "That I did not go peacefully into that dark night" like most obits read. "She went peacefully to be with our Lord" is NOT going to be my legacy. I'm fighting for everyday that He will allow me to have here...........

I do hope I'm not over stepping my limits here I just know with all my health issues it is hard and I can honestly say I do understand. I know what you are feeling but I do think a lot of it is fatigue, depression and pain talking. If you could get some help for those you might just get through this crisis......

You love the OZ things. Judy found her answer within herself. Look into yourself. Are you really ready to let go and go home permanently? Or do you want to play in OZ with Jim a bit longer? Home (Heaven) will always be there but OZ (this life) is as fleeting as Dorothy's dream. Forty is too damn young to die!

Here is a link to Mayo Clinic's site on the peripheral neuropathy

http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131 .

It might give you a bit of hope that maybe they can help. You would be shocked at what they can do there! I've sent a young woman with an inoperable brain tumor there and she has passed her one year anniversary and is still doing well.

With that said my friends, it really got me thinking about everything that has happened since meeting with my HIV Specialist and this whole neruopathy thing. The whole neighbor thing and her being so mad at my doctors and starting vitamins. It made me realize there still is so much left for me to do yet, so much more to enjoy and since this post is running rather long I am going to save my opinions on Oz till later. Thank you everyone of you that take the time and read the blog and fro being there through this all.

Well this time its another twist of music set to Oz pictures-----Freddie Mercury and Queen singing "You're My Best Freind"-----Thanks for everything Christins

Today's thoughts & over 2,000 hits

You know I have had so many people ask me if I have watched any of the Democratic/Republican conventions and for me the answer is a solid NO. I have made up my mind already, I did see every single debate but I am at the point I am over it all and am looking forward to November when this is all behind us as a distant memory.

I did however find this to funny Youtube video with Oz and John McCain and here it is.....



I waited to post about my visit with my general practioner as I needed time to really think things through before I talked about it. Of course if you read this blog on a regular basis you will know how hard it has been the last couple of months physically speaking for me and with latest news with the Extreme Peripheral Neuropathy and that it being in my brain to a degree has been very hard to bear. When you add to the mix that it will not be getting any better and if I over extended my self it only makes it worse even faster.

Well I mentioned all this to my General practioner and about the crippling fatigue and she looked at me-----"Why are you fighting so hard? What haven't you resolved yet" and I just lost it. I haven't cried like that in a long time and I still don't have an answer to her questions.

She felt if there were things I needed to resolve and to do so, to be at peace and if then that lead to "my ending"--as she put it--- ok. If not than at the very least I will be a peace being so sick here all the time. Which lead me to honestly say for the first time that if I was so sick like I was from November through Easter, I didn't know if I had the "fight" left to pull through it or not.

If I were like that now or worse it would be easier to understand why I feel the way I do. She proceded to say "Who is stay say you are not worse than you were than, its just a different kind of feeling and you have fought so long and so hard already, that maybe it is time for you to seriously rest. I am not saying to take matters in your on hands and end your life, I am saying if it is time andG-d needs you than you need to accept it".

I really am beginning to understand the last few days why Ron felt the way he died those last six months he was so bad, why he gave up when he lost his drive and why it went so suddenly. I have never been able to see it and I think I am beginning to. As I told Dr. Dianne I am just so tired of being so tired all the time and that it has complete reign of my life, which seems like it is slipping away.

A brief departure from Judy

Ok I saw this morning in one of the blogs I read--a gay artist actully and he had this song in his blog and I thought it was just the coolest thing I had ever heard in my life. Who knew our gal Cyndi Lauper could kick it like this. Every know and then "Girls Just Wanna Have Fun"
so for all of you in the same mood I am today kick back, sake your grove thing and get down with Cyndi and Me.

LATER

Some good news as well as some sad

I got a mesage today from Akron General Hospital and we have ENOUGH people for the Spirituality Care and Comfort class to happen. SO for all of you who helped me pray. THANK YOU!!!! I can't wait! Eleven weeks of classes ending November 19th and one step closer---- YIPPEE. Last time it was life changing.

The sad news is a very dear friend of mine lost her husband of 66 years Wednesady and I just got word today. Calling hours are Monday and funeral on Tuesday. So today I ask that you join me in asking G-d to surround my friend Jeanne in his arms of comfort at this time. Her husabn Len ahad been very ill this last 4 months and while Jeanne was expecting the worse it always comes as a shock.

Today's clip is Della Reese singing "Walk With You" and the gang from Oz, giving it a whole new perspective.

The start of something different

Well as many of you may have read yesterday, I have had some rather un-nerving news and I am trying my best to adjust to it. Here lately that means turning into myself, becoming very quiet and just being. Deep in thought, no radio, television or anything on--just being in the moment.

This morning Jim made the decision to quit his part time home visiting nurses job, it wasn't quit working out the way he had planned and now with the news I got he felt his place was in helping me to try to stay ahead of the doll repairs we currently have in house. As of today I am about a month and a half behind and we made the decision today as well, if something new comes in that the turn around time for me to finish it is much longer. This is until we can really plan things out and see what we realistically can do.

The dogs went to the groomers today and with their bow-bow's in their hair they are just to flipping cute, especially Glinda (the littlest one) who knows she is just to damn cute.

I have been kicking around some new ideas in my head of things I could do in this "down time" and one of them is to write a book. Not sure the exact angle yet, and this isn't something entirely new but it is something I have given some thought too.

Not to much really new on the home front, so until tomorrow I ask that you keep me in your thoughts and prayers as you are always in mine. Today's post is because I have done a "Youtube" search involving the "Wizard of Oz" and trying to find some fun and different things involving this classic and of course my favorite subject !



A Wizard of Oz Music Video To "Dancing Through Life" from the musical "Wicked". For you hardcore Wicked fans you can rest assured that you wont see Elphaba get meltified

Not just another dizzy bitch

Well gang I went to the doctor today (my HIV Specialist actually) and talking about my newest medications I have been on since July. My biggest complaints being the extreme crippling exhaustion and the soreness and loss of feeling in my hands and fingers. Then add into this the dizziness, the 2 times I have passed out again, the tremors, the hour it takes for me to be "normal" functioning after waking up and all the other fun stuff.

So he had me do some in office tests and came to the conclusion that it is Extreme peripheral neuropathy that has caused it all. Mixed in with the Chronic Leg Syndrome and the Fibromyalgia it is not good to say the least. No real treatment, no real cure and if I over tax myself or push myself it gets worse even faster. So it is one of those learn to deal with it diseases which we all hate--lucky flipping me. At least I know its more than just being a dizzy bitch

In my case the dizziness is caused by the Neuropathy as well and we have to keep an eye on it and make sure it doesn't get worse as in some people it means lesions in the brain. So after seeing me today and not doing so well with the tests I am on extended leave to rest till I am better and then and only then I am to be on a very low work level. I am to cut everything work wise severely down--next to nothing in his frankest opinion.

So not sure exactly what will h appen as far as the business goes and as many of you know it helps pay our bills, helps supply gas and food and my spending money. It could mean a huge financial loss if I out right retire. To a degree I knew I couldn't go on forever but also I wasn't expecting it this soon.

I am also waiting to hear from Akron Hospital if they have enough people signed up for their 2nd level Spiritual Care class that is part of the introduction classes to becoming a chaplain. I ask that you join me in praying that we get enough people to sign up. It is 11 weeks long and ends around my birthday in November.

If you haven't noticed as of yet the sidebar has changed with my favorite links and for the most part they are all Oz related--some of the sights are very COOL, so I hope you take the time to check them out.

Also if anyone is reading this and lives in Vermont, visiting Vermont or has family in Vermont--the Ben and Jerry's Icecream people are doing a Yellow Brickle Road I thin its called in conjunction with an Elton John Concert in Vermont and only available in Vermont. You all can eat the ice cream I just would love the EMPTY container!!!!!

So in closing I ask that you pray that I am quiet enough within myself to hear G-d's voice in what to really do with the news I got today and that somehow G-d knows the greater plan for me as well.

Another day

Well, I finally went saw a very good friend of mine to have a long talk about how I have been feeling and thinking lately and I honestly think it helped some just to be able to get it all off my chest--so to speak.

The fatigue for the last few days has been unbearable again, and it seems like all I want to do id either sleep or read, and you all know how much I love to read. Especially my newest subjects to read about Judy Garland and Oz. Thank G-d for Amazon.com is all I have to say and the huge savings I can get there. For example I am getting "Under the Rainbow: An Intimate Memoir of Judy Garland, Rock Hudson and My Life in Old Hollywood" by John Carlyle. At Borders books this is $21.00 I got it this morning for $5.13 and that includes shipping, who needs a drive to the bookstore when all you have to do is go to your computer chair !

The fatigue for me the last few days has taken a new twist that when I am just waking up I am very drowsy/dopey/dizzy and incoherent for almost half an hour--it makes things interesting to say the least. The doll work has suffered some more because of all the looming fatigue but when one needs sleep--I sleep.

I go to my HIV doctor on Wednesday my three month check up and since being on my new medications I am sure he is going to want to do a new blood test, to see how everything is working. So keep me in your thoughts that day. Anybody else looking really forward to the new season of "Pushing Daisies"

Have you ever felt like this??

Well I have---- "full to the brim of the whole damn world.....I don't care if the are fasting! I can't be spread so thin---I belong to myself". Some days it just gets to be too much, the prescription pills to fight AIDS, the side effects, the fatigue the burn out. Maybe this clip is why so many of us as gay men relate to Judy.

A four hour nap this afternoon as the fatigue was way to much to bear, the numbness in my hands has been very steady and as I told Lisa ( a friend I consider my sister) that I am suffering from burn out in many ways. The only good thing is Jim today got dinner tickets to Carousel to see "The Wizard Of Oz". I have started on my goodies for the goodie bags at Chesterton and I thnk they are just to damn cute.

Anyway as always keep me in your prayers.......

Another fall and stuff

I got this wonderful comment in my blog that I wanted to share with all of you. It is from a very dear friend that I consider my other mom--she has been a real blessing in so many ways and she herself faces odds that make me at the least hopeful that I too can overcome somehow----

Charlie:

I'm going through the same thing. I think it's the heat, the medical problems that never seem to end and the knowing that fall and winter are on our heels.I have just been resting a lot, and watching TV shows I like, not putting any more stress on myself and I suggest you do the same. I have been here before, I know you have too. The good thing about having been in this valley before is knowing that you will climb out again, somehow. Leave in the hands of the Almighty. I think He's telling you it's time to let your body heal.

Hugs & Love, Christina

Now for a little comment--it has been so hard admitting that I am at this place again. A place where yesterday I fell again in the kitchen and it had me so distraught I wasn't sure what else I felt. I am not sure of many of you reading this know that feeling or not but it is so overwhelming that it just seems to envelope everything you do, think or are. It is also hard because what days I have been able to work I have really manged to save so we can get away and now we are 34 days away from that happening.

I guess I'm just so afraid that "the beast"--that this illness can be--will come out and be in full force by the time we go and I have worked so hard just to be able to go. I believe though that somehow I will go, because if I don't, I do not want to even think about how I am going to take it.

It just gets so old so quickly being so sick that it just seems to consume everything you have, everything you think you are, every emotion you feel. There are many days when there seems to be no real end in sight and the "looming cloud of despair" that lives over your head like the raincloud that loomed over the Addams Family home.

I don't want to close on a down note so I will share my one bright spot this week---my winning 3 concert programs from Judy Garland concerts on E-bay. In some some way it is like being near her, or at least to something that was once in the same room she was.

I know it seems odd that that is my high point this week and I know its more than likely a cliche that a gay guy collects Judy Garland and Oz memorablia but right now it brings happiness into my life and reading about it takes my mind off of things as well.

In a real funk

Well I have to admit I haven't "blogged" since July 20th simply because I have been in one hell of a funk if you will. I didn't do any work of any sort for almost 2 weeks and did nothing but work on a quilt, I started when I was so sick in December through April, and read.

Its like somehow, somewhere I have lost who I am, or at the very least who I thought I was. There has not much interest in anything except the Wizard of Oz--eBay, the Oz groups I belong, Oz/Judy websites and listening to Judy Garland records. It seems like I have lost all interest in doll making, collecting and repairing for the time being and the only real joy comes when my littlest Shi Itzu Glinda --all of 10 pounds--is being a spitfire and making me giggle.

I would have to say it seems like more than just depression, but with the diarrhea gone and fatigue somewhat more manageable I know in my head I shouldn't be complaining about anything. The tremors I have been having I think are because of the meds and are somewhat more stable but the last two days I have had some serious problems not feeling my fingers and hands especially my right hand which of course I am. I ask as always that you keep me in your prayers and that I find myself somehow.