Well I thought I would share with you my new treatment.

Well the time has come for my treatment, I am blessed it’s all coming together, but never the less scary, a friend just reminded me not to be the victim but the fighter, so that is who I have to be. My treatment protocol is coming from Washington research institute, and national institution of health and Stanford. I.will be receiving ivig treatments that go between 3_4 hours per visit
My scheduleis 5 days on 5 days off. If i can tolerate the treatment, they will be surgically putting in a port, so i dont have to destroy my already calcified veins. Then we are back on 5 and off 5. There are risks but I have to say I am not getting them. Ihe first week will be the hardest , we are trying to get the home health to come do it at my home wich is 100 percent covered and keep me out of areas where people are being treated for infectious disease. That’s the goal. I was not aware this treatment will continue for a year if not longer. I will.have regular blood work and biopsys to see if the treatment is working. Each vial is $6,000.00 so making sure it working is important information and will be done at Stanford. Although this day should have been done years ago, the technology wasn’t there and reno can’t even perform my biopsys. Seriously!!!stanford does not trust the equipment or Doctors in reno because for one they do a echocardiogram and told my MVP has healed and My heart was fine, only to find out my MVP is worse and I had a heart attack and surgery done there. The simple step of turning the loop recorder down so it can read your hearts activity is pretty embarrassing, mind you the Dr did it with out any surgical attire in a Operating Room and had to be reminded by the tech he had no sterile clothing on. So many stories like that. I simply can not believe a Doctor in Reno can not do skin biopsy’s. 2017 why will no one do them, Every Dr said they can’t be done in Reno. My trust level has diminished in this town and the 49 Doctors that mis diagnosed me, but no one was willing to look outside the box, they choose to not keep up on the latest papers, journals ect. There a few good ones left in town but soon to retire, the only gynecologist my insurance covers, I wouldn’t take my guinea pig to. But there are a lot of new Doctors in town, one is my Electrophysiologist, He’s suppose to be like the best in the US, a little odd but I don’t Care, Dr Ogara, Dr Fairmond, Dr West, Dr Backman, but again none of them are treating me, it is going through Stanford and that is fine with me. One thing I have noticed about the new generation of Doctors coming into Reno, Is a lot of Indian decent and so kind, smart, empathy, and truly in medicine for the right reason, So Reno hopefully will be changing. So there r two things I’m asking any of my close friends, I might need help time to time or someone to come just sit with me, I’m also asking that please donate blood, blood is used and things removed that cure others, not just today, but on a regular basis, since I am the guinea pig for this I pray it not only works but can help all the other people that aren’t even being tested for this antibody, but I had a Dr at Stanford that went beyond the call of duty in researching who was researching my first disease the autonomic dysfunction didn’t just land off mars and pick me, I carried the antibody that causes it. So that being said I have volunteered to be part of the research team, I’m not going through just for me but the people diagnosed behind me, so I wanted to give you a update and to tell you how its going.

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Being your own Advocate!!!

This is my personal story of why you need to be your own advocate. Its hard when you sick, weak, tired, nauseated what ever your symptoms may be, but I have learned the largest lessons is Stand up for yours self. When you go to your Dr. Question the medications they are giving you, I have started asking my Doctors to write down their instructions for my treatment, you get so many instructions, prescription refills, so that helps a lot, ask what is the best way of communication, I have one Doctor I had to get a app on my phone and can only correspond with him, another they have different charts online for different Doctors or Doctors that are not on electronics they usually prefer calling leaving a message. I make sure my next appointment is set up. Before leaving. Always have your ID and insurance card at every visit and expect to fill out new paperwork every year, I have only come across that with one office. Pain Management Doctors require a agreement to receive pain meds and you can not get pain meds through same Doctor. Write your list of questions. and get to know your insurance inside and out. Most information is on line. But If you leave it to Doctors they get to you when they can . Well You must speak up for your self even if that means you speak to the office manager. Call daily if you have to. If you don’t your at the bottom of the pile. I am not rude disrespectful, I explain what I am going through and its amazing how that gets things going. Your doctors office may tell you a Dr they are trying to get you into will take 6 weeks, I called got in 4 days, they told me my home health is 500.00 per visit. I found out I have 100 percent home health coverage. So my point is be your own advocate, or if your truly not well enough appoint one, ask, tell them you need one to step up on your behalf, My contact at my insurance has done so much for me, I can’t believe it. Also make sure that people you want to receive information have written permission and those you don’t you have a letter stating that. Hospitals at least one that I go to is going to a code, If I am in the hospital and someone comes in without a code, no info is given. so make sure what your hospitals policy’s are and your Doctors office, such as if you have a child that goes from pediatrician to gynecologist, the gynecologist can’t break Hippa and give you information unless your daughter wants them to, a husband has no writes unless written consent. So when a Dr’s office says check in is 15 minutes a head of time, that means arrive 15 minutes ahead of time. We are getting less and less Dr’s in the Reno area and specialist are booking out 6-12 months in advance so I always ask for reminder card or call or make the appointment. If you stay regular and are on top of your appointments, there more likely to squeeze you in if there is a problem. Don’t wait until you have a problem to keep up on visits. I went to every Doctor and asked How many times do I have to see you to be compliant with your policy’s, my one Dr said 1 1/2 years, I ask another one every 6 months another one every 4 so if you let your health care go. you will be put on a list that could take a year. If your Dr calls to get into another Dr’s office, the Dr can possibly get you in sooner. So I hope some of these ideas can help with your Doctors and there is online medication lists or phone apps for medication list and allergies. That Is so important. Well that’s all for today. You can get a little not book that you can tape or keep somewhere it won’t get lost that reminds you of Dr’s how often to see them, what they require to remain a patient ect. Kelly

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RX for the Soul by Annette Childs PH.d

“As I walked out the door toward the gate that would lead to my freedom, I knew if I didn’t leave my bitterness and hatred behind, I’d still be in prison.” Nelson Mandela
Nelson Mandela’s words are a poignant reminder that even when we have earned the right to have negative feelings about someone who has mistreated us, if we choose to hold on to those feelings, we are imprisoned right along with whoever it is we are condemning.
When we have been wronged it can be so hard to let go of the natural feelings that arise. Letting go of our anger makes us feel vulnerable, and although letting go is the most powerful thing we can do, we often worry that it will make us weak and small…. And if we let go of our bitterness, doesn’t it somehow send the message that the wrong against us was acceptable?
No. Wrong actions are wrong actions- and the only thing that truly makes them acceptable is when the party at fault takes responsibility.  Far too often, the ones who wield the weapons against others lack the ability to come forward and take responsibility for the bad blood they have spilled. You can choose to spend your life waiting for an apology that may never come, but while you wait, something inside of you will die. Let go of your hope that they will do better. Maybe someday they will… but you can’t live your life for someday. What you have is today…. So live there.
Go on with your days in the best way that you know how.  Remember that you do not have to love those who have hurt you. You do not have to condone what they have done.  You do not have to protect them from the natural consequences of wrong action- and although it may take time, these consequences, they always come.
Remember that the one’s who have wronged you, do not require your punishment. The debt they will pay is the fact that you will no longer be a presence in their life…. And whoever you are, and however small they may have made you feel…. Remember this; You are a child of this universe… you are perfect whole and complete.  Because they do not value you, this does not make you without value.
It can be the work of a lifetime to rise above the things and people that have hurt you.  Bolster your ability to do this by keeping company with people and things that bring you joy. Surround yourself with those who want your good and see your good. Keep your life free of those who fan the embers of negativity in your world. When love is no longer being served, get up from the table and leave. This is how you begin to emerge from prison….
Walking all the way out of that prison of anger is something that often takes time, and that’s okay. When someone hurts you, give yourself some time with the pain. Talk about it, share it, and express all of the ugly emotions that are a natural reaction to pain. Don’t be afraid to dance with the bitterness…. But do not stay there too long… there is an old saying that if you chase monsters long enough…. Eventually you become a monster too.
Once the pain has made its path through you and you have screamed and cried and found your own way to get it out…. then you will be ready to walk out the same gate Nelson Mandela speaks of….
 And when you walk through that gate without the burden of anger weighing you down, you will not be weak, and you will not be small. You will be free.
 

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How to Celebrate the Holidays sober by Caleb

Photo courtesy of Kelly Helsel
Sober Holidays Fun is All in How You Plan It
It’s almost Holidays and everyone is excited to celebrate. However, if you’re a person in addiction recovery, this holiday is especially risky in that you don’t want to be caught off guard and risk relapsing. But never fear, the trick to having a fun Halloween night without compromising your sobriety is all in planning ahead.
Here’s how to brew up a fun Holidays while sticking to your recovery plan.
Have an exit strategy
If you’re going out and want to avoid tricky situations, it’s important to know when you’re going to leave any gathering and how. First and foremost, you need to have your own way of getting home that doesn’t rely on anyone else. So consider driving separately from the group or hailing a cab. You’ll also want to have a buddy who’s down to be sober with you so you have someone to lean on throughout the night. It’s a good idea to craft an escape code with this person so they understand when you’re ready to leave without it being a buzz kill for the rest of the group. When it’s time to hit the road, don’t beat yourself up about it, and don’t let anyone pressure you into staying longer than you’d like. As Psychology Today points out, “If you allow yourself to leave parties when you’re ready, you’re more likely to enjoy them while you’re there.” If necessary, make specific plans for after the celebration and let everyone know you have to leave because you have somewhere else you need to be.
How to respond if someone offers you a drink
Not everyone understands your situation, and you certainly don’t want to spend Halloween night explaining it to them. In order to have a good time without any alcohol, you should establish a few responses you’re comfortable with and have them prepared in case anyone unknowingly tries to get you to drink. As Top Dreamer suggests, sometimes a polite “no, thank you” will suffice. However, letting people know you’re not drinking because you plan on driving soon is also a foolproof answer. Again, if it’s possible, don’t be the only sober friend at the party.
Having someone else around who’s not drinking can help take the attention off of you. It’s also a good idea to carry around a non-alcoholic beverage to sip on all evening so no one notices you’re not drinking. Most importantly, have fun. If you’re enjoying yourself and socializing, what you’re drinking won’t matter to anyone else.
Don’t go out
Maybe you’re just not ready to be surrounded by people who are drinking, and that’s okay. As a person in addiction recovery, it’s important to know your triggers and come up with solutions that will help you safely maneuver them. However, just because you’re not spending Halloween night out trolling the bar scene doesn’t mean you can’t celebrate and have a good time. Rethink Halloween and get into the spirit by going to a pumpkin patch, picking one out, and then having a carving contest back at home.
There are plenty of other creative ways to get into the spooky holiday swing as well. Try roasting pumpkin seeds, touring a haunted house, or dressing up your pet up and donning a costume to match. You can also try snuggling up by the fireplace with a pot of chili and a good horror story, or go out for a hay ride and get lost in a corn maze. Try hosting a bonfire, or maybe even re-enact the cult following behind Rocky Horror Picture show by having a screening and dressing up as various characters.
No matter what you decide or what your comfort level is, know that you can have a good time this Halloween without abusing any substances. By planning ahead, knowing how to handle social situations, or choosing to stay home, you’re taking charge of your night and your recovery.

I would like to add a few words to Calebs post, I also feel you can offer water in pretty wine glasses with chopped up lemon or cucumber, you can offer a non alcoholic beverage, soda, find recipes for Virgin drinks. You can have fun with out Alcohol, but so save feelings to to follow proper manners for a party, on your invites, you may want to mention this is a non alcoholic party. and whether or not people can bring their own. People don’t want to find out once they get there and a lot of people like to bring wine as a hostess gift and if you don’t want to provide alcohol or don’t want people bring alcohol, please be clear, so you don’t cause any embarrassment. you my find people cancel and that is there right, so it’s your home and for me personally I serve everything and if people bring stuff they are welcome to. Its a gamble! But also consider who is on your guest list.

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Supporting people with invisible illnesses