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Date Posted: 15:17:54 04/12/14 Sat
Author: GoodWillTalking
Subject: Update From Raven's Facebook

For GoodWillTalking, I accidentally deleted your kind attempt at posting my latest update for me out here. I just went ahead and copied and pasted it again for you since I hit the wrong button. Thank you as always for being so kind in updating my friends out here, who don't have Facebook. Thank you so much for everything......XOXO...

I know that many of you have been worried. I have seen the posts and read some of your emails, but it's hard to even describe what the past few weeks have been like. I just wasn't ready to talk about it. I was so sick for days there that I couldn't have come out here and written anything in depth if I tried. When the hits keep coming as they have over the past two and half years (constantly without a moment to breathe), it begins to strip you of your energy, hope, fire, and even your faith (and mine is very dear to me). John and I know in our hearts that nobody can possibly understand what we are dealing with because you would truly have to be here to understand. You would have to see it with your own eyes and realize the magnitude of these constant hits. The one thing that nobody could ever accuse me of is being weak. I am no weak woman. I have dealt with things that are unimaginable. Only my Oncologist, John, my family, and I know just how bad things really are (and my beloved Cat, who so many of us hold dear, who was there holding my hand when I was being infused with chemo).

I am so tired of being the daughter of doom. I want to scream sometimes and never stop. I want to tell you wonderful things. I want to tell you that I am doing fabulous and that John and I did this or John and I did that. I want to say that everything is beautiful, but it's not. John and I got in an argument yesterday and it broke my heart (we held each other and cried afterwards from sheer exhaustion). I think all of this is getting to him more than I realized. It began with Facebook of all things. He asked me why I didn't want to tell you of the new plague that has hit me because I am beginning to feel like Egypt here with plague after plague after plague being hurled at me. I am so tired of bad news. I am so tired of never having a moment to breathe. I am also tired of telling you nothing but bad news. I know in my heart that so many of you are good people and you get it. I know that. I have seen that in the love you have shown me out here and in the words you choose. I am sure it gets old hearing it (try living it).

Never has my Oncologist seen a case like mine. He admits that I have had things thrown at me that are just crazy and at the speed of lightning. Not many of the eye rollers out there could ever deal with this much and keep that smirk on their cruel faces. I am tired, and I am losing hope. There is no other way to convey what I am feeling right now. I have fought like hell for 28 months straight. Nobody can truly know what every inch of that has been like unless they are able to view it up close and personal. You can only read my words and get a general idea. It's been a nightmare. When someone tells me to stay positive or let the negative energy go, John and I look at each other and say "are you fucking kidding me"..............Clueless! Doing more than you will ever know to stay alive and just get through each day with all of this going on! If I wasn't strong, positive, and a true warrior, I would be gone now with this form of cancer, and these set of circumstances. I would be gone...end of story!

Every time I take the only thing that can possibly save my life (Gleevec), my immune system shuts down almost completely, and I get dangerous infections. It's almost non-existent as it is, which is why we fight so hard to stay away from crowds, anyone who may be sick, and worry that I might get the flu or a cold right now, which would be lights out basically. The one drug that was supposed to be my miracle drug. The one drug that can at least beat Angiosarcoma back, causes my immune system to tank completely leaving me with MRSA or some other type of infection to deal with. I can never get ahead. I can never stay on the drug long enough for it to do anything. It's frightening and heartbreaking. It's my only chance. If it were not for my Oncologist, who is the sharpest and most compassionate doctor anyone could ever hope for, I would be dead by now. He always has a strategy, and we keep trying. I know that if I was still dealing with that lifeless, zombie, walking, drone that replaced him, she would just shrug her shoulders, write me my monthly script for pain relief, and dismiss me until the day she got that phone call that I am gone. He helps me to fight. He cares and it shows. He is my lifeline.

Once again they came to my rescue (him and his adorable wife). The last thing I told you was that I was dealing with what I thought was either a very nasty MRSA infection or a new Angiosarcoma lesion on the skin. The thought of it had me sick to my stomach for days on end. The idea of all those surgeries to keep removing it, as it grew back again and again, as I had done in late 2012 to 2013 had me numb (I was in surgery every 6 to 8 weeks over and over again to control the lesions). The idea that the MRSA was THIS bad had me frantic, as this thing was responding to nothing that we were trying. I usually put some Manuka Honey on them (Medi-honey) and take Doxycycline, and they are gone. This one was not budging and only growing worse and worse. I've been getting low grade fevers for almost three months now. This thing began to grow and grow and suddenly it was now all over my shoulder and crawling up my neck with painful itching and blisters that feel maddening. I've been feeling incredibly sick and very tired with it as well.

It's not easy for John to get off work. It's not easy for us to make these long drives to see doctors in our area, as we live out in the country. I grilled the woman who makes appointments for a medical practice that I was sent to before when I had that MRSA infection in my chest, about taking samples (grilled her like a cheeseburger over it). I explained that I needed someone who doesn't just look at sores or rashes that could be infectious, but that takes samples of them to see if it's MRSA, Angiosarcoma, or what else it might be. She assured me that they do this all the time. I double checked. I made it crystal clear before making the appointment, and she said that I had nothing to worry about, as they do this all the time. John took off work and we made the long drive out there. Not only was it a long drive, but I was taking a huge risk going into a place that deals with infectious diseases, with my immune system. We get there and we are asked how we got the crazy idea that they take samples (no....not kidding)! I was floored and told her that the woman at the front desk, named Katie, assured me that you not only would take samples, but that you do it all the time! She laughed and said "she is very sweet, but they don't know much at the front desk about all that we do"...........! John and I are good people. We are always gracious and tactful, but we both lost it in there, and were floored at the outrageous excuse and the fact that we had just wasted all of this time, money, and put me at risk for nothing! Can't make this up! We thought when does this end for us! When!

My Oncologist took one look at it, and knew exactly what it was, and that I was now dealing with Shingles. I have never seen anyone with Shingles and have never had anything like this before, so I had no idea what was happening to me. He was the one that knew right away, and put me on antivirals immediately. I am also on the Doxycycline to make sure the blisters do not get infected, but I was floored, as I had heard that Shingles can be debilitating and causes further pain down the road as well. Thankful that it was not Angiosarcoma and not MRSA, but Shingles! Now! Seriously? Really? ENOUGH! God...................!

We just broke down at this point because I feel like a fire extinguisher putting out fire after fire after fire here at this point. It's been all that I can do to not scratch my neck and shoulder off, so I have gritted my teeth and left it alone as much as possible. The antivirals were not kicking in as they should have, and we thought I was going to end up in a hospital with this, due to my immune system and dealing with cancer at the same time. The Famvir just began to kick in a few days back. Finally, it stopped growing, but the bright red, intense, blistering, rash grew over my port, which is what had me even more of a wreck, as I can't flush my port now. The last thing I needed is to have this grow over my port! It's been mind numbing....

I admit that there was a day or two that I stopped praying for the first time in almost two and half years. I began to lose everything (faith included). That was the hardest part for me (to lose my faith and hope at the same time). My Oncologist's wife was so kind to me, as she tried to get me to not give up hope and truly understood how I must feel with this neverending rollercoaster of pure pain and suffering, because that is what it truly is, make no mistake. Enough already....God. It's just been too much. I finally began to get my bearings again recently, and I prayed through my tears to God once again. I said that I knew that he already understood why I am breaking down, and feeling lost and hopeless with all of this. I know that he knows our every thought. The one thing that I felt through it all was that Michael never left me (the Archangel). I could feel him, but that was all I felt. I held onto that. I truly love Michael with all of my heart and soul. He is more real than you will ever know. I am back to prayer and some hope again, but not as strong anymore. I don't know how long this is going to last, but we are riding this one out. I just didn't even want to talk about all of this for a while. I am just tired. Deep down tired and scared.

I could never thank you enough for the love and support you have shown me. So many of you have proved to be true friends through all of this. Much love going out to that special friend of mine who told me to read the book of JOB, as he was a righteous man who was hit with plague after plague after plague, thinking God must be punishing him, and his so called well meaning friends let him believe that, when none of it came from God. Bless you for that. I needed to hear that right now.

Raven''s Official Facebook Link:

https://www.facebook.com/ravenbeauty.soapdiva

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Replies:

[> Re: Update From Raven's Facebook -- PeaceLily, 17:11:59 04/12/14 Sat [1]

I rarely post, but have read all along, and have also kept you in thought and prayer..... Reading your latest post brought this scripture to mind:

Romans 8:26
English Standard Version (ESV)

26 Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.

The Holy Spirit Himself, is interceding for you in your need with perfect prayer; be encouraged.

My heart aches for what you are going through.....

We are to keep our focus on Him, and not the circumstance; challenging, yes.....

He can change your circumstance, however dire.....

God bless you; I pray for your healing.

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[> Re: Update From Raven's Facebook -- Hannah (Healing Light, Hope, & Love), 21:41:25 04/12/14 Sat [1]

(((Ravenbeauty)))

"First" mag for women had a report that MRSA is killed by *apple cider vinegar*!!!
Please ask your doctor if you can apply it topically (I remember you already drink it with water daily - it can be taken that way 3X a day, BTW).

My prayers continue, strong as ever!
Love,
Hannah

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[> Re: Update From Raven's Facebook -- Rene', 09:46:31 04/14/14 Mon [1]

Hi Raven,

I thought you might appreciate a cool story right now. One of those stories that remind you that there is so much out there beyond what we see on the earth plane. It has to do with Archangel Michael and that's why I thought you'd get a kick out of this. One day on the way to Chicago from Detroit with my guy our car got 2 flat tires on an extremely busy and dangerous part of the highway where 18-wheelers are constant and there's just no room on the shoulders. We pulled over and my guy said he was going to get out and change the tire (at that time we thought there was one). I told him to wait for a policeman to come by or something as the area was so outrageously dangerous and that side of the car was facing the horrendous traffic. He insisted and all I could do was pray. I prayed to Archangel Michael and asked him to please, please protect my friend and surround us in his powerful blue light. Literally within a minute a police car pulled up behind us. The policeman walked up WEARING BLUE and I already had a smile on my face just about that and the fact he appeared almost immediately. He called a tow truck for us because he saw that we had 2 flats and waited until we were safely sitting in the truck and our car on the trailer. When we got in the truck the driver said, "Wow, that's a miracle." I said, "What is a miracle?" He said, "I haven't seen Officer Michael in this area in years. He must have known you needed him." I had told my friend about my prayer to Michael before the tow truck got there and so when we heard this statement we both just looked at each other with the biggest smiles and lots of laughter! :) We even shared the story with the tow truck driver and he got the chills. Please don't think I'm comparing this to your story in any way. I can't even imagine what you have and are going through. I won't say to stay positive. I won't tell you to turn it over or try to let it go. But what I will tell you is that these miraculous things happen in my life every day when I choose to be open to them. I have a whole lot of negative in my life these days and I hurt and cry and bitch and moan sometimes. Sometimes the miracles seem miles and miles away. But at least you and I can together know that there is another realm and we have no clue as to the enormity of what else is out there. We can also know that, for whatever reason, we are gifted enough to experience these miracles and almost none of the other people in my life do. With this in mind I wish for you all the peace that these miracles can offer and wish for you the extreme self-acceptance that it's okay to feel whatever you feel every day, in every way. It is all part of being here. Because we feel so deeply we can also feel other realms that aren't apparent to many. Very much love and light to you my fellow friend of Michael.

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[> Re: Update From Raven's Facebook -- Mistyme, 03:24:48 04/17/14 Thu [1]

Raven, As I have written before I pray for you & John too everyday. You are both in my morning, afternoon & evening prayers. I am glad that you could feel Saint Michael with you & I am so happy that you are back praying. I wish there was more that I could do for you. Sending you lots of love. Mistyme

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[> Re: Update From Raven's Facebook -- Samantha, 04:06:08 04/27/14 Sun [1]

Raven, ask about Neurotin for dealing with the shingles. I've had it before and neurotin helped tremendously with the residual nerve pain from shingles.

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[> Re: Update From Raven's Facebook -- BW, 10:10:28 04/28/14 Mon [1]

We just want you to know you are continually being lifted up in our prayers.

Hope you and John had a Blessed Easter and it gives you hope as you you continue your fight.

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