Hi everyone, yes it has been awhile, but in my defense i have been really sick, in and out of hospitals and everything else. I have nodules, clots, internal bleeding, swelling and all sorts of fun stuff going on…Arrrggg
With that said, i just wanted to drop by and let everyone know i am still alive. I am doing the best i can. I will try as i have time and or feel up to it, answer emails. I am very grateful for all the emails i receive.
Life has been very rough especially lately. I have a hard time accepting what i am going through, i am afraid and thats that. I have very little family and i am alone most of the time. I have a lot going through my head. Being as sick as i am is hard and no one around you will ever understand what you go through and therefore its lonely. Its my body hurting, my body bleeding, my fatigue, my sores, my blood clotting, etc. Its just plain awful!
Then i look around and see all that my health has destroyed. All my prior dreams are gone. I now have to make new attainable goals. Ones that i can do in the near future. I do not know what time i have so i have to make goals that i know for sure i can make happen. I need to stop worrying about some of the other goals i have because i believe God has plans for me. I need to just step back and take a breathe of air and let God do his work. I have an awesome church family and through them i have met some great people who may have the answers to some of my prayers, but i just have to sit back and see where life takes me. I know what i want and i am not leaving this earth without getting it. It may not be how i planned it to be, but i will complete the things that mean the most to me. I know this is the year for new people in my life and i am very open to letting them into my life. I am a good beautiful loving person and my health will not define who i am.
I will try to write more later this week. I am just so exhausted! This disease is awful! Anyways just a little update and some info on what i have been thinking about lately! As usual thanks for all the love!
p.s Please check out Tyrone Wells tour, it starts this coming week….in fact i will be seeing him this Sunday in Sacramento! Love you all times infiniti
Hi everyone, i have not been on here for about a week. That is what is so unpredictable about this disease, is that sometimes you are just out of it for days. Although i did have a busy weekend and i did make it to all my classes this week. I was in a lot of discomfort but i took care of my responsibilities just the same! A lot of news on my end, my MRI as far as i have been told was ok, it is not what we thought it was, so i guess that is good, although something is going on in my leg, so we need to figure it out soon! I see the DR next week, so hopefully i will have another wonderful set of tests to do! I know this disease is a pain and i know its never going to get better, there is no cure but i would just like to be a little more comfortable. I feel i do not ask for alot?! I noticed i have a few emails that need to be addressed, so i am going to do that here on this post. So with that said lets get to IT
Email #1 Are there days when you just want to give up and not live anymore? and if so how do you get through those types of days? REPLY That is a touchy subject because if you were to ever admit to those kinds of thoughts, someone could possibly report you and have you locked up for suicidal thoughts but to be honest OF COURSE i have those days. Especially when their is NO cure, i am going to die and the statistics show that most of us who have multiple organ RA die from cardiovascular issues and or lung issues so that scares me. And then i get to watch my hands and legs just not work. I get to see nodules grow on parts of my body, i get ulcers from the chemo meds. Everyday is something, i do NOT ever get break and sometimes yes i do think things that i shouldn’t but i just find something else to think about and i pray. I pray for God to help me get through the day. And i am still here so something must be helping. Any chronic disease is tough, you will most likely not ever get a break, but i have seen some people with just RA live ok lives, not great ones but they are managing so if you have just RA that is something to hang on to. Unfortunately for me that is NOT the case, i do not know how much time i have but i am going to live everyday like its the last. I have wasted enough time on things and people i can’t change! Chin up and find that one thing that will keep you going and talk to someone you TRUST, either in person and or online!
Email #2 I also have multiple organ RA and i am in constant discomfort and pain, any ideas or suggestions? I just feel so horrible. REPLY Now this a question i would actually like answered myself! LOL I too am in a lot of pain, i have top of the line narcotics(pills and patches) and i still feel a lot. I have however found that drinking “superFood” in a shake twice a day and taking salt baths a way to get more relaxed. At night i also take on top of my narcotics 400mg of ibuprofen and sometimes a Valium to help sleep through the night. I also sleep with a large heating pad and a large fluffy pillow in between my knees so my legs never touch. Other than that i do not have many ideas. This is a very painful road you and i are on. I hope research makes some headway soon. Sorry i can’t be of more help, just know you are NOT alone!!! Hugs and much love to you!
Again thank you all who support me either in person or via here! I am exhausted and need to lay down again but i will try to get some more emails answered soon and also work on my picture page! Keep positive! Love you all times infiniti!!!
This information i have seen many places but it was best explained on RA Warriors(a BIG thanks to Kelly) page which can be found at
But here is the what i thought was important for my own blog. 🙂
1) Rheumatoid factor: the first antibody discovered to be commonly present with Rheumatoid Disease (RD), about 70% of the time. Rf is also present in many healthy people who do not develop RD. The percentage of people who show positivity for Rf increases with established disease.
2) Anti-CCP or ACPA: a more recently recognized antibody commonly present with RD, and more specific to RD (so that there are fewer “false positives”). Between 70 and 90 percent of PRD are positive for ACPA.
3) Erythrocyte sedimentation rate or ESR: a test that measures the millimeters of red blood cells that fall in a test tube in one hour. ESR can be increased in pregnancy and in other conditions, including cancer, and often correlates with inflammation. The ESR is often normal in PRD.[1,2]
4) C-reactive protein or CRP: CRP is considered an acute-phase reactant because it can rise dramatically during inflammatory activity. CRP is considered a significant factor in heart disease. Several physical conditions or activities can impact CRP including smoking, diet, and obesity. The CRP is often normal in PRD.[1-4]
This is a guide that i will continue to add things too. I have found that these things help in my own personal life and some of these ideas i have also gotten online and or in books i have read. I Hope this helps, if you can add to this list please do so!
1.Learn as much as you can about your loved ones illness/disease. The more you know the more i believe you can help. Look on internet sites, read books, talk to others etc
2.Make sure you know how much you can do either emotionally or physically. If you over do it, you may take that out on your loved one, so please speak up when you need a break or you just need help with something.
3.Understand that you will have to deal with not only your loved ones feelings but YOUR OWN. You may be angry, tired, worries, you may even feel guilty about your sick loved one. These are all ok, but you CAN’T hold it in, you must talk to someone. Holding in your feelings will only do you harm.
4.Make sure you still have YOUR time. We can manage on our own sometimes. You deserve a break take one. Talk openly and honestly to your sick loved one about this, they will understand, and even if they dont, you still need to have your own time.
5.Take care of your own needs, eat, sleep etc
Today i say enough is enough. I live day to day with an incurable disease, a disease that is going to kill me, is that not enough?! I say it is! Today i am over giving 100% to things and getting 5% back. Now that i have had time to think about it, i realize that because of my health i have allowed other parts of my life to get in bad places. I have allowed people to take advantage of me and hurt me. I know you probably are thinking to yourself, who would hurt someone in my health condition…BUT it happens. It happens more than people think it does. Just this morning i spoke to another person with bad health issues and her boyfriend left her over the weekend. People only think about themselves even when they say they don’t..the truth is they do! They do not put their sick loved ones above themselves. Why well in my opinion, they are selfish. I sit here right now and realize how much pain i am in not only physically but emotionally. Sometimes so much that i just don’t want to live in this moment anymore. Its very hurtful to give all you have(which is hard when everyday is a health struggle) just to get kicked in the face. Anyways my point is this…when your no longer smiling and your health has taken the back seat…..ENOUGH IS ENOUGH. Take what others have given you and move on for example the young lady i was speaking of earlier said she is just grateful her boyfriend got her through some hard times before he left(instead of being consumed with all this negativity of him leaving her, she is choosing to be positive)….WHY let others hurt you after the fact when we can just move on with our heads held high and wait to see what is store for us next……so if you find yourself in this situation say thanks and move on(life is short and who knows that better than US?)..when one door closes another always opens…I PROMISE you this…..
AM I STRONG ENOUGH?
I have often pondered this question. Sometimes i sit here and think, can i take another day like today? It is then that i realize that I did make it through today, i made it through the excruciating pain, the not being able to lift my arm, the not being able to walk far, the not any pain meds can help me scenario. So the answer is YES i still have a little fight in me…its not my time yet… 🙂 But with that said… It has been a rough couple of weeks, a few days in the ER, a few bad tests and tomorrow an MRI, that i PRAY will not come back with more bad results! Anyways i just wanted to do a short shout out to everyone…i am here i am just unable to type with one hand…so hang in there with me..and as soon as i am able..i will write more and put up my photo page! As always thanks for all the support and Happy March!