I guess I am feeling okay?
I put a question mark after that statement because I
really don’t know how I am feeling. It’s been one of those
weeks and I have a feeling that I am going to flare big
time. I’ve been so very tired but unable to sleep at night.
Of course there is the pain …… joint and muscle pain. I
have been living on my “Big Gun” meds. I don’t like it but
I have no choice when I start feeling this kind of pain.
(I really wish that they would legalize the use of medical
marijuana! But that’s for another journal entry.)
So, I go to get my coumadin levels checked today and
my level is way too high… 8.6. As we all know my target
range is 2.5 to 3.5. I’m like more than double what I am
supposed to be. I got the lecture from them as to what I
should be on the look out for… abnormal bleeding from
any orifice, vision changes, and headaches. I have just
one question. What is considered abnormal because I
live with these things almost daily? And, you do know that
at around 5:00 or so I started to get the most unbearable
pain in my head. It felt like someone hit me on the head
with a hammer. Nothing would work to take the pain
away. I took two Tylenol 4 ……… nothing …….. Drank
some green tea because I need to do the Vitamin K thing
when my levels are too high. Nothing. I took my nighttime
meds (holding the coumadin) plus another two Tylenol 4.
Now the pain is bearable. I hate taking the “Big Gun”
meds because they screw me up big time. My sleep is
going to be screwed up and I am going to want sweets.
Sort of like the munchies. But I really have no choice
when I feel like this.
I’m really doing well with the NO SMOKING. I want one but
really can’t imagine smoking. I really want to breathe.
Still can’t walk far without gasping for air and having
palpitations.
Tomorrow is Lauren’s graduation party. It’s a party for her
and her friends. Hubby is going to BBQ. That should be a
blast. After tomorrow night I canpass out and not worry
about any more events. I am so sick sometimes that I feel
like my children miss out on stuff. I a so happy that Lauren
was able to go to her prom and I could do all the Mommy
stuff for her. Her graduation was great. When I scan her
picture I’ll upload it onto here. She really looked
beautiful. She is cleaning up the house as I type.
Well, good night for now. I am praying for all my Lupie
buds and for all you whoare reading my journal. Thank
you for your wonderful comments.
Posts
11 comments:
Hey there! First of all, let me commend you on your bravery and courage! I would not be able to go one from day to day like you do and I admire you and all people living with lupus for that! I do not know anyone with it nor do I have lupus myself, however, I have read a lot about it and have an idea of what you go through... never give up hope for the best, ok? You have so many people whose heart goes out to you and people with lupus... if only more people were aware of it... but, again, let me tell you that you are an amazing woman and that you are admired by at least one person...me.
Congrats on the no smoking. And congrats on making Editors Picks!
Krissy
http://journals.aol.com/fisherkristina/SometimesIThink
Hey Lu Anne, Hope you`re feeling a little better by now. I just have to take this one day at a time and pray alot. I know pretty much how terrible this pain can be. Take care!! Prayers, Fay
hi i am a lupus my self for the passed 5 years it really sucks i have it really bad blood /skin /hair loss/major organs too if theres anyone who wants to chat about it my email address is cranston821@aol.com would love comments feel free to email me thanks pam
Isn't it amazing that it usually takes something drastic for us smokers to quit. I'm glad you kicked the habit, but sad for the reason behind it. I will keep you in my prayers. I'm not exactly sure what Lupas is, but it doesn't sound good. It sounds like you're in a lot of pain. So, I will pray that the pain lessons so you can have more enjoyable times with your family and friends. God bless you......
Luanne
I think you are an incredibly brave woman. Being able to share your life and how the disabilities have affected you may give hope to some other soul.
I have three children who all have multiple disabilities and a husband who is also disabled.
We don't have a lot of material things but we have each other and have been the support to each other that no one else was willing to give. It has been a difficult 34 years but I wouldn't change a thing. Somewhere I once heard, 'the best is yet to be.' I hold on to that when I think negatively. Hang in there....blessings will fall your way when you least expect them.
Respectfully
Ramona
Congratulations on quitting smoking!! I hear you on the "I guess I'm feeling okay?"... I feel like that alot. Not really in excruciating pain, but an underlying feeling of yuckiness & warning.. RA will give that to you too. Sorry to hear about the sleep troubles, I get that too. It sucks! Love your journal! I'll have to come visit more often! Hang in there lady!
http://journals.aol.com/FoxyGreenEyedLdy/FoxysRAJournal
Thank you for posting this. It makes me feel like I'm not alone. I was recently diagnosed with lupus and no one around me understands what i going through.
{{{{Luanne}}} I am so sorry that you are pain...it never seems to end does it?
Hang in there, I hope the party is great and that you get to rest afterward.
I am feeling under the weather too.
Be well,
Dawn
Hi there! i know how you feel with the Lupus and the flares, I was just telling my husband that after about 2 weeks of feeling half decent, I feel as if my flare i'm in is getting worse. I was diagnosed in Jan. 2003. My family just doesn't understand what pain and fatigue that i go through on a daily basis. My biological mother has Lupus also, so she can understand. My last ana profile was extremely high, also my anti-SSA. My Dr. seems to think that I have mixed connective tissue disease and not just Lupus. I spoke with him just today about giving me some stronger pain meds right now I go from Darvocet-N 100(which does no good) and he had gave me a prescription for Percocet-5mg, but they keep me awake at night. Even though I take 2 mgs of Xanax a day sometimes 3. I am waiting to see a Rheaumatologist. My dr. says he will give me some different meds later this week, he wants to see me first. If you have any suggestions on a good pain med please let me know.
Hi Luanne,
I have Lupus and believe me I know what you are going through. I was on chemo for six months with kidney problems in 2001. I also have my flare ups and downs. This illness takes a great deal out of you but keep up with your spirit and fight it. Right now I am in a severe flare up and may have to go back on tratments. So of the medicines I have been on made my condition worse. Many people who do not understand this illness do not realize how it drains your body completely. Although we may look good on the outside, everything inside hurts. From me to you, you are in my prayers and thoughts. Sorry that you are going through such pain. If you wish to e-mail me please do TWilson605@aol.com.
Terry
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