As tomorrow is Thanksgiving and a lot has been happening lately, I figured that it would be a great time to write a little update as to what is happening, as well as to tell you how thankful I am that I have all of you to support, encourage, and pray for me because I definitely wouldn’t have made it this far and long without the help from you. You really have made a great difference in my life and I can’t thank you enough for it. Even though I am dying, dealing with overwhelming pain each and everyday, and this illness has robbed every single joy basically that a human can have, I am still extremely thankful this holiday season for being able to see another year and for all the people that have cared for me and loved me.
Whether it has been by saying a prayer, donating, spreading my links/messages, or even just by reading my updates, I want to say “thank you” because you have shown that you ‘cared’ for me. It shows that I am still important to the world and I am still needed even though I am not really ‘contributing’ to society and making a difference as I had planned by working and having a career or anything. My illness has really forced me to have limitations, but people have really made me feel “wanted” and “needed.”
I only hope and wish that I will be around to see another year. I can’t remember the last time my family officially celebrated a holiday, but just being together on Thanksgiving is enough for me. So many people have these extravagant social events or dinners during the holiday season, but unfortunately just like we haven’t been on a vacation in many years… the same came be said about celebrating a holiday. Unfortunately, everything costs money and since my illness is incredibly expensive and costly, we really don’t have the funds to celebrate the holidays like we once did. But we don’t need to have the extravagant affairs or gifts because just being together as a family and knowing that we are all together for another year is enough for us. Yes, it would be nice to celebrate the holidays like everyone else does, but maybe when I am better we will then be able to, but right now our money and focus is going towards trying to get me well, which is more important because without that I won’t be around to celebrate these holidays next year.
I am not going to lie, but I do feel incredibly bad for my family for what I have put them through. They certainly don’t deserve this kind of life. My parents have given up way too much for me and I only wish they didn’t have to. I wish they could be like other people their age and be enjoying their lives because they are at the point where they should be because they have worked all their lives that now they should be ‘enjoying’ themselves. Yet, instead they are working harder than ever and not even able to enjoy all the money that they worked for all their lives because it has been all put towards my illness. My parents claim that they don’t mind and would do anything to get me well, but I really feel badly and only wish that I could make it better for them.
Well… in a few days we are hopefully off to the Cleveland Clinic. We are still extremely short on funds, so it is still not 100% that we are going. But, we really need to get there because I am really going downhill and downhill fast.
So many things have been happening especially lately. My stomach and entire GI system is really getting worse and the pains that I am getting in my GI system have been excruciating. It is like I am having a baby. I get these pains that continue to build over the course of 2 hours and then slowly dissipate. When these pains happen, they are so debilitating and painful that all I can do is curl up in the fetal position and cry. I just moan and cry and pray that it will end soon, as well as beg someone to just ‘knock me out’ because of how much pain I am in. Of course no matter how much I beg though for someone to do that to me… no one does. However, whereas these pains used to only come only once a day, they are coming so frequently now and I can’t even catch a break.
I have also been incredibly thirsty. No matter what I drink, I just can’t quench my thirst. I drink at least 6 powerades a day, which come out to over 120 ounces. I even get IV twice a week when I go for the procedure to clean out my colon and when I go for the ketamine. Yet, when I went for bloods, the results have shown that I am completely dehydrated. I am just not absorbing.
When I went for the procedure to clean out my colon, the doctor actually saw what was happening. He said that I am filled up with so much fluid in my stomach and abdomen because I am just not absorbing. I constantly look like I am 9-months pregnant because of all the fluid and I even have trouble breathing because it is leaking into my lungs from backing up. The doctor said that he wanted to try to drain some of the fluid out, but he wasn’t able to because there was too much debris in my colon because it is completely paralyzed and can’t move through. In fact, today when I went for the procedure, he said it was the worst he ever saw me. He said I had so much debris that I kept clogging up his channels.
Something is really up with me though because my bloods have been really bad lately. Doctors are really worried about me because the bloods have shown how my organs are failing and it has also pointed to how I have a mega infection somewhere.
When I came out of the hospital from the surgery on my hip, femur, and pelvis, I had a stage 4 bed sore. That is an extremely dangerous thing to have and the doctors are now worried that I developed osteomyelitis from it. If I did, it can be extremely life threatening. I have been getting really bad bone pain and when I had my previous bloodwork, I had a very elevated white blood cell count, which showed that there was definitely an infection somewhere. So… everyone is freaking out because that further points to osteomyelitis, which is a bone infection.
If it is a bone infection, it is extremely dangerous and needs to be taken care of ASAP. If it isn’t treated immediately, it can be life-threatening and amputation can have to happen as well. So I am heading for a CT scan on Friday to see what is happening within the bone. Never a dull moment! I wanted to go sooner for this scan but unfortunately I didn’t have the funds for it. Even though we are covered for this procedure under the insurance, we still have a copayment of $100 just for this scan alone. Gosh… this illness just has us paying constantly.
So I will be going Friday and I will let you know the results. Fingers crossed that even though we know I have an infection somewhere that everything will turn out to be negative in terms of being a ‘bone infection!’ I just hope that I get the results right away because it is Friday and I know I won’t hear anything over the weekend and then we are supposed to be leaving first thing Monday morning for Cleveland.
Cleveland is quickly approaching and I am both excited and nervous. My dad will be coming with me along with the Scoobster. It will be Scoobster’s first plane ride so it will definitely be an interesting ride. Gosh… if I didn’t have the Scoobster, I don’t know where I would be. I just love him to death, but I don’t know if I am being fair to him. Sometimes I wonder if he is best off living with someone else because I can’t do many things with him like other people can. But everyone tells me how he has a bond with me and how he looks for me all the time.
To be frank, Scooby is my life. I love him to the moon and back. He is so well trained and behaves so well. People can’t believe that he is only 8 months old. When we go out he never barks and will literally sit with me and not bother anyone. He just loves to sit on my lap. He is just the best. He looks just like a real life teddy bear. If I didn’t know at times he was ‘real’, I wouldn’t think he was a live dog. He has the most expressive eyes and I never saw another dog that have eyes like that.
Well… I guess that is about it for right now. I have ketamine in a few hours so I better go and rest. I just wanted to wish you a very Happy Thanksgiving and want to thank you again for all your support and encouragement and prayers. Thanks for being there to listen when I needed a shoulder to lean on. Please continue to do this and please continue to spread my website because I really need treatment and I can’t afford it without help from others. I really need as much help as possible so I can get to Cleveland and so I can get the help I need even in New York.
The holidays are coming up and miracles are possible during the holiday season. Maybe I’ll get my miracle of getting well. I just want my life back. That would be the BEST gift ever!!
Thanks again for everything.