Grandpa brought over deviled eggs and olives. Kristine, Joe, and Eme brought fruit salad. We had turkey, mashed potatoes, gravy, stuffing, pumpkin pie, and pecan pie. And it was wonderful!! I hope everyone had a great day too! I had a nice day at home! And I did NOT watch the football game!
I am still using a lot more oxygen, I am a little less tired. I can't really do anything still. I guess I am doing a little better though. I still itch like mad! And I still have drainage at the site.
Friday, November 27, 2009
Monday, November 23, 2009
Calling
First... HAPPY BIRTHDAY MOMMA!!!!!
Ok, next:
People tell me, "call me any time!" or anything along those lines. And I don't call them. It is because when I do talk to them they tell me all about how busy they are. I feel like calling them to do something is going to interrupt their lives. They reply, "oh you are never an interruption! I have time for you!" But it doesn't ever feel that way. I am not scolding anyone, just trying to tell you why I don't call you.
I want to say "Call me!" Call and tell me, " I am free this day at this time, and this day at this time. Can we get together?" And if I know that I am being an inconvenience (like you are my ride to a party and you would have to leave WAY early to take me home because I am exhausted), I am gonna say no. Period.
So that is why I don't call.
Ok, next:
People tell me, "call me any time!" or anything along those lines. And I don't call them. It is because when I do talk to them they tell me all about how busy they are. I feel like calling them to do something is going to interrupt their lives. They reply, "oh you are never an interruption! I have time for you!" But it doesn't ever feel that way. I am not scolding anyone, just trying to tell you why I don't call you.
I want to say "Call me!" Call and tell me, " I am free this day at this time, and this day at this time. Can we get together?" And if I know that I am being an inconvenience (like you are my ride to a party and you would have to leave WAY early to take me home because I am exhausted), I am gonna say no. Period.
So that is why I don't call.
Wednesday, November 18, 2009
Results
Well, the tests are in, and here are the results. My TSH is too high, 5 times the high end of normal. My iron is too low, I am anemic. I have Fibro (as noted previously) and *GASP* my lupus is... ACTIVE!!! Midly so, but still active. I got a pneumonia Vacc, and I am hurting because of it. That is a reaction to be expected.
Here is how I feel. I hurt, I am sleepy (but getting sleep right now... lots of it), I am not hungry, and I am cold. On oxygen most of the time... even at home. I guess a bit happier.
Here is how I feel. I hurt, I am sleepy (but getting sleep right now... lots of it), I am not hungry, and I am cold. On oxygen most of the time... even at home. I guess a bit happier.
Saturday, November 14, 2009
My Mom
She was interrupted while writing that post and subsequently had a breakdown. She managed to clean the entire kitchen while crying. You would have to ask her privately what happened.
She is overwhelmed, and feels out of control. She said that she has lost contact with her friends and needs to reconnect. And I agree. I wish she didn't have to do this. I wish she didn't HAVE to check on me and Dan all of the time. That all day she didn't HAVE to worry.
I was supposed to delete her post and write my own. I didn't do that. I liked what she said. She needed to do it.
She is overwhelmed, and feels out of control. She said that she has lost contact with her friends and needs to reconnect. And I agree. I wish she didn't have to do this. I wish she didn't HAVE to check on me and Dan all of the time. That all day she didn't HAVE to worry.
I was supposed to delete her post and write my own. I didn't do that. I liked what she said. She needed to do it.
The Good, The Bad, and The Ugly
I requested Anna let me post the blog from our trip to Denver...there is GOOD NEWS!!! Actually there is great, good, and ugly.
The Eco showed a reduction in the pressure of her heart to 50-normal is 30 and she started her Ph life at over 100. The right side of her heart is almost normal, still slightly enlarged but good improvement. Dr. Bull is thrilled!! We are thrilled...but now confused. If she has this much improvement; why the pain? Why the fatigue? What is going on?
They ordered a chest x-ray and pulmonary functions test, they appear to be good; chest x-ray show's chronic pulmonary hypertension (of course) and the pulmonary functions were good.
The next visit (so glad we were there for 2 days:) ) was with a Rheumatologist to consult about her lupus. He was disappointed her Dr. in GJ hadn't been following her with blood work to monitor the lupus and felt she was way over medicated with a drug that can not be absorbed by the body in the dose she was prescribed and was not followed with folic acid and vitamin D (which it takes from the body).
After a lengthy consult with the department head (quite the lady) the conclusion was...fibromyalgia. Yup, now you know the good, the bad and the ugly. Fibromyalgia was a condition she had visited with her Rhuemetologist in GJ about-but he didn't feel the disease was valid disease (all in peoples heads). So...after discussion and checking drug interactions and theraputic dosage, they decided to increase the cymbalta (which was perscribed for depression, but has been found to reduce fibromyalgia pain) dosage to a theraputic level (double the current dose she was on).
They took over a dozen viles of blood to re-establish a baseline for her lupus and will call after the results are all back. We will return to see them February 1, 2010.
After we returned home this evening she received a phone call with the lab results from the TAH blood work (for her hypothyroid) and it was at nearly 29!!! High normal is 5. OMG! She meets with an internist who performed her residency at CU Med Center on monday so...I'm sure she will work on the dosage of synthroid.
The Eco showed a reduction in the pressure of her heart to 50-normal is 30 and she started her Ph life at over 100. The right side of her heart is almost normal, still slightly enlarged but good improvement. Dr. Bull is thrilled!! We are thrilled...but now confused. If she has this much improvement; why the pain? Why the fatigue? What is going on?
They ordered a chest x-ray and pulmonary functions test, they appear to be good; chest x-ray show's chronic pulmonary hypertension (of course) and the pulmonary functions were good.
The next visit (so glad we were there for 2 days:) ) was with a Rheumatologist to consult about her lupus. He was disappointed her Dr. in GJ hadn't been following her with blood work to monitor the lupus and felt she was way over medicated with a drug that can not be absorbed by the body in the dose she was prescribed and was not followed with folic acid and vitamin D (which it takes from the body).
After a lengthy consult with the department head (quite the lady) the conclusion was...fibromyalgia. Yup, now you know the good, the bad and the ugly. Fibromyalgia was a condition she had visited with her Rhuemetologist in GJ about-but he didn't feel the disease was valid disease (all in peoples heads). So...after discussion and checking drug interactions and theraputic dosage, they decided to increase the cymbalta (which was perscribed for depression, but has been found to reduce fibromyalgia pain) dosage to a theraputic level (double the current dose she was on).
They took over a dozen viles of blood to re-establish a baseline for her lupus and will call after the results are all back. We will return to see them February 1, 2010.
After we returned home this evening she received a phone call with the lab results from the TAH blood work (for her hypothyroid) and it was at nearly 29!!! High normal is 5. OMG! She meets with an internist who performed her residency at CU Med Center on monday so...I'm sure she will work on the dosage of synthroid.
Sunday, November 8, 2009
Now
Mom and I go to Denver Wednesday. I have an Echo Wendsday early afternoon, and then a meeting with my doctor after they review the Echo. Then Thursday morning I go back to see a rheumatologist there at UCH. That will be nice, weird to go through that again, but nice to have new eyes. I am not sure if there will be anything else that needs to be done, but I never know until I am there.
I am doing ok but not great. I have been having a lot of trouble breathing, and still so tired. I think they are going to find my disease progressed. I hurt frequently. And I have been having odd dreams.
If I don't write before I go to Denver, I will when we get back. I will be coming home Friday or Saturday.
I am doing ok but not great. I have been having a lot of trouble breathing, and still so tired. I think they are going to find my disease progressed. I hurt frequently. And I have been having odd dreams.
If I don't write before I go to Denver, I will when we get back. I will be coming home Friday or Saturday.
Sunday, November 1, 2009
The Truth
Mom told me the other day that I have to be strong for Tori, Bella, and Eme. And I know it. I do try. But I am so tired. I am tired of everything. I don't want to do this any more. I have such heartburn, and I can't breathe, and I hurt, and I itch, and I don't want to do anything. I just want to sleep! I barely have the energy to do one thing each day. When Eme is around I find the ability to do whatever else, or for Tori and Bella. How long is that going to last?
And I am tired of false hope. First is was, "you have lupus, but you will be able to live a normal life." Then came, "you will still be able to do most things." Then it was "you have a deadly disease, but here is a treatment that will make everything bearable." It doesn't. I don't have a normal life, and I don't get to do most things, and this isn't bearable.
I love snuggling with my mom on the couch. That is the most exciting part of my life now. That and watching NCIS.
I hate people telling me, "God never gives you more than you can handle." That is crap. That is a cop-out. And this doesn't bring me closer to "him". In fact this whole thing has taken me further from "him" than anything else has. Did you know that I believe in reincarnation, and I am polytheistic? I did nothing evil enough, or bad enough to deserve this. But I get it.
And you know what? I am ready. I am done. I have cried a few times this week, and I have remembered, and thought. And I have reached the point where it would be ok. I just need you to know, and understand and be accepting, and not be mad at me when the time comes. I am not giving up. Saying it is ok is not weak. It is strong, hard, and right.
But do you know what HAS happened because of this, I mean other than all of the terrible things I could list and mention? I am a lot closer to my friends and family than anyone else I know. I have the single best mother in the world. The best parents, grandparents, teachers. I know that I am truly loved, truly cherished. So I can be at peace, with everyone in my heart.
And I am tired of false hope. First is was, "you have lupus, but you will be able to live a normal life." Then came, "you will still be able to do most things." Then it was "you have a deadly disease, but here is a treatment that will make everything bearable." It doesn't. I don't have a normal life, and I don't get to do most things, and this isn't bearable.
I love snuggling with my mom on the couch. That is the most exciting part of my life now. That and watching NCIS.
I hate people telling me, "God never gives you more than you can handle." That is crap. That is a cop-out. And this doesn't bring me closer to "him". In fact this whole thing has taken me further from "him" than anything else has. Did you know that I believe in reincarnation, and I am polytheistic? I did nothing evil enough, or bad enough to deserve this. But I get it.
And you know what? I am ready. I am done. I have cried a few times this week, and I have remembered, and thought. And I have reached the point where it would be ok. I just need you to know, and understand and be accepting, and not be mad at me when the time comes. I am not giving up. Saying it is ok is not weak. It is strong, hard, and right.
But do you know what HAS happened because of this, I mean other than all of the terrible things I could list and mention? I am a lot closer to my friends and family than anyone else I know. I have the single best mother in the world. The best parents, grandparents, teachers. I know that I am truly loved, truly cherished. So I can be at peace, with everyone in my heart.
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