My follow up with Dr. V..

Yesterday was my follow up appointment with the specialist in LA. He gave me a lot of information to digest. I have all my faith and confidence in him so I'm trying not to freak out or over think anything. He believes I have Dermamyositis and not Polymyositis, but I don't have the rashes that comes along with Dermamyositis so it's not adding up. Also, he believes I have Lupus overlapping the Myositis and along with Sjogren Syndrome. He ran even more extensive blood tests and ordered me a high definition CT Scan of my lungs and brain. He also ordered a breathing test because I get short of breath a lot. I have been in a tremendous amount of pain this past week so he gave me some really good pain medicine to help me function throughout the day.

I am trying to stay positive. The IVIG hasn't helped, but it is keeping my CT blood count down and keeping me stabilized. He wants to start me on a treatment that isn't FDA Approved but has an 85% success rate. He is also running tests to make sure I won't get any of the side effects. I will find out the results in two weeks from the blood tests. So yes, a lot to take in!! I have a great family and support team and Dr. V is a great doctor.

I have my first Nerium Real Results Party tomorrow and I'm really excited for it. This is something I can do with my mom and sister. I'm ready to feel like I'm part of society again.

I hope everyone has a great weekend!

It's 4:30 am..

I can't sleep. I'm in so much pain that it hurts to breathe. I can't relax which hurts my jaw. I don't understand why I'm in so much pain. I'm not understanding this journey and what it will teach me. I am noticing that I am beginning to open up more and allowing people in. I've always had so many walls up because I was afraid of getting hurt. But I have learned life is too short to live that way. I have a better relationship with my family now. I enjoy spending time with them and I look forward to dinner. Eating with my mom and Dan really completes my day.

I had a client reach out to me yesterday who has been battling lupus for three years now. She doesn't have the support from her friends and family like I do. I offered to go to a support group with her. Knowing that she has me when she is feeling weak or sad really makes me happy. I want her to know that she isn't alone and that I will always be there for her. I definitely have opened my heart out to others that I wouldn't know how to before. I realized just being there helps someone. You don't need to say anything as long as they feel safe with sharing their struggles, you know you are doing something right.

I go see Dr. V in la on Friday. He ran some different blood tests so I will get those results. I am also going to ask him about the pain and if he can help me out in that department. I have three treatments left. After that I switching over. My doctors locally are a joke. It's sad to know that they don't really care about the patient and they treat everyone the same. I think my other doctor gets paid to write prescriptions because he completely contradicted himself. It was a waste of appointment and it wasn't a good day for me to be out. At least I know now.

I am starting a new venture and I am going to be selling Nerium now. Please support me. My website is: hayleywarm.nerium.com
This is my only income coming in because I am unable to work. I swear by this product and it is amazing!!!

Weeks Update..

The appointment with the specialist went really well! He was very thorough in his exam and asked many questions. I was very happy and felt very confident in him. I am going to have him work with my doctor right now until my treatment is over and then switch to him. I am in the middle of treatment so that is why I don't want to switch right now. I also found out I have fibromyalgia and acid reflux. So he gave me new pain medicine to help with that. My body doesn't feel like it is on constant fire anymore, just at night a little bit.

I have lost a lot of hair and I will continue to lose more. So my amazing parents bought me a wig yesterday. It looks really natural and makes me feel better about going out. I feel really pretty in it and confident. It's long and voluminous! It's closer to my natural hair color with highlights in it. I love it!

I have treatment again next week. I'm ready to start feeling better. I feel like lately I have more bad days than good. And I am always so tired..I need energy! Dr. V (the new dr) said we won't know if the treatment worked until having 6 months of it. Next week will be my half way point. He also noticed I lost more muscle than I realized and his main concern is to get me strong again.

The pretty things..

When my hairstylist, who is also my good friend, was doing my hair, we talked about how I notice things in people and in life with a different outlook. I believe that our purpose in life is to find that one person who completes us and mate. Whether it's the same sex or opposite sex, we are here to mate! Before I was so choosy and picked all the wrong guys and now I can see the purity and generosity in someone else's heart. I feel I have a better judgement on who is in my life and who I will allow to be in life. I took those things for granted before pm and now I refuse to.

After this last IVIG I have had the worst stomach aches! I feel like my body is filled with gas. I burp and it hurts!! And it taste like a chemical. I hope it goes away after my next treatment.

I am now having joint pain that seems to keep me up all night no matter how much medicine I take. :( Tomorrow I will see the specialist in LA. I'm looking for some answers and I hope to get them! Also, if I'm on the right track to getting better because I believe my doctor doesn't know this disease or wants to try and understand it. Given I'm her only patient with this, it is still frustrating on my end that I know more about the treatments than she does. :/ I will let you all know how that appointment goes!

One day at a time..

The past couple of days I've been really exhausted. My body seems very worn down. I am not sure if that is apart of the recovery stage to this disease or if I am going to have days like these because I have this disease.

The recovery after this IVIG has been completely different than the first three. I am hoping I get stronger with each treatment. I'm not as sick, only at night which is odd to me. I tried to apply for an on-line class, but I didn't get in. I am completely bummed out. I feel like if I got that class then I would feel somewhat part of society. I can't let this get me down because it takes me longer to get back up. I don't want to drive. Just the thought of me behind the wheel freaks me out. I am so scared to drive right now. I am scared of life right now. Baby steps, yes.

I have now surrounded my life with only a few friends and my family. I feel that these friends will keep me safe and are actually worried about my well being. They care. I decided to color my hair. It's red. I feel like myself somewhat again. I am going to get a wig as well. I am not completely balled and I still have hair, but it will make me feel better. I have four more treatments which means more hair is going to fall out. My hairstylist told me that there is regrowth which made me smile. I shouldn't worry about the little things and look at this picture as a whole, but I can't help it. And telling me any different won't make me change.

My pain isn't everyday anymore, but when it is here, it is screaming and pounding at me! My body is still on fire every night. I think I somewhat have gotten used to that feeling. I still get pain in my right shoulder so I put crochet on hold for now.

My appointment with the specialist is next week. I am super stoked for that appointment!

Feeling Good today..

I have now had 3 IVIG Treatments including the one I had in the hospital. I was down for two days after this time. Today I have more energy than I have had in a long time. I was able to start organizing my room (which I have not since I've been home from the hospital), but I don't want to over do it so now I'm resting. I have hope today which is really good for me. I've noticed that when it is cold outside I can feel where the liver biopsy was done. It's crazy!

I'm really happy today. I love all the people that are in my life at this moment. You really see who will be there for you when you go through a life-changing experience. Some people upset me that I thought would be there, but I can't get upset. I need to move forward and be thankful for those who are in my life. Those are the people who count the most.

My pain isn't that bad either. Or maybe I have gotten use to it and it doesn't bother me like it did. I have a few bald spots as well. I really try to not let it bother me, but that's a hard one. I haven't quite got used to that. Nobody notices it but me. My nails are growing like champs and my hair is falling out, it's crazy.

I hope that after each treatment I get stronger. I have four IVIG Treatments left.

60+ Days..

I am now past my 60 days home from the hospital. It has been a lot harder than I thought it would be. Dan estimated three months I would be up and moving ready to be on my own. I am no where near that. It is definitely going to take longer than that. I have learned a lot about myself and what I really want out of life. So that's good. I am getting stronger, but it's so gradual sometimes I am hard on myself.

Today is my second set of treatment and I walked to the treatment room without my walker or help from someone. Where as last month I was wheeled up. So there is progress. I've been down the past couple of days so instead of being a Negative Nancy on my blog I've neglected it. Today is a little better.