Here I am after being a shavee for a St. Baldrick‘s Foundation fundraiser for children with cancer on September 22, 2011.
A couple days ago I looked in the mirror. I desperately need a haircut. (I’ll be seeing @mafiahairdreser for that next week.) I remembered doing a fundraiser for St. Baldrick’s a couple years ago. It got me thinking. I am feeling the love for others. I want to do something more for such worthwhile organizations. I don’t plan to have my head shaved again for a while. I have a love for health issues and social services so probably it will be one of those. One I am considering is St. Jude. This organization gets to my heart so much! there are so many great organizations that I love! I am open to ideas if you know of any in Chicago area who need my help. I have a few websites that I will watch for good opportunities too.
This is me today.
Hugs and <3 to you,
Posted in advocacy, charities, Health, Personal, Uncategorized
Tagged advocacy, cancer, Cancer research, charity, Chicago, fundraisers, fundraising, Health, St. Baldrick's Foundation, St. Jude
It’s Christmas Eve, so I am told. Trees and homes are lit and decorated. In some cases, maybe even people. Even my door is decorated. But it still doesn’t feel like Christmas. I miss being with friends and family. I would give anything to be with and talk to my kids again. I am pretty much alone. My mom and brother live out-of-state and I still have some PTSD issues communicating with them. Telling them Merry Christmas is by email or text message. My kids don’t want to see me. My son is confused and still adjusting to me trying to have some part in his life. My daughter is angry and confused, and doesn’t understand about PTSD problems either. I am an have been improving in regards to PTSD issues but the holidays, friend and family problems, questioning the truthfulness about a potential job… I don’t know what I should believe. I want a normal life again. I want my kids back in my life. Even online I sometimes feel alone. I actually hate holidays–especially the last few months of the year as it is related to PTSD issues stemming from things that happened in this time period in 2002. Life isn’t great. Its not horrible either. For the holiday I will just exist.
I am really pissed off right now with some of these gimmicks being sold on TV. I’ve had enough of seeing commercials for “natural” treatments for medical conditions. Yes, my dear friends, skin tags ARE a medical condition! Sure, skin tags can be harmless. But this commercial is showing more than just skin tags. Small, brown moles are also being treated as “skin tags” because they are protruding from the skin the way skin tags do–right?! Oh, come on! Listen, have you heard of a dermatologist? You know–a doctor who specializes in treatment of skin conditions? I don’t fricken care if you don’t have psoriasis! If you want any part of your skin removed, you need to see a dermatologist! They are specially trained in identifying skin markings, shapes, and characteristics and will know if there should be cause for concern in how it looks or with the treatment. Now, I do believe that nature can be of substantial benefit to us in treating some problems–as long as done safely and with medical physician approval. You may think that because something is “natural” that it must be safe but that is often not the case because of food or drug interactions, and because of dosing, and your own health conditions. Even natural and herbal products can interact. I can’t believe how many people harm themselves because they want to think they know best. I’ll be honest with you. YOU DON’T! Don’t fall for some gimmick trying to treat yourself for something. Not even insomnia. Check with your doctor. Many doctors have advanced training in herbal and natural treatments too. Ok. I’ll get off the soapbox now before I get started on sharing medications.
I read a Time Magazine article about a “miracle baby” born prematurely at 21-weeks gestation. The baby left the hospital and went home last month.
” Doctors in the U.S. often advise that premature babies born before 23 weeks be given only “comfort care” — swaddled, they’re handed to their parents to hold, free of medical interventions. If parents insist on treatment and the baby weighs more than 500 grams (about 17.5 ounces), “most of us give it a try,” says Gerri Baer, a neonatologist in Rockville, Md., who also happens to be my oldest friend. ”
It’s so sad and scary. If it was my baby, I’m almost certain I’d hope for the miracle and want medical care for it. I can’t imagine going through such an event. For myself if anything should happen to me, I don’t want life support. I have lived. No sense letting my body live when my soul is gone. Donate any salvageable organs and bury me. But a baby–there is so much hope for children and there is so much to live for. I know there are often complications and illnesses in children who survive premature birth. In some cases, the most severe, perhaps the child would be a “vegetable”. It would be a risk in deciding how to care for a premie baby at birth. I have cared for people in a vegetative state, severe brain trauma, coma or something from a non-birth related injury and there is always at least some hope, but then reality too. It’s tough to see family members who are still hoping for a miracle recovery long after brain trauma leaves someone in a vegetative state. I am sure it would be tough for me to be that family member also. Worse with my medical knowledge and work history because I’d have more a sense of the reality fighting the fantasy and hope for a miracle. My prayers go to everyone going through such issues.
You can read the entire article here: http://healthland.time.com/2011/05/27/baby-born-at-21-weeks-survives-how-young-is-too-young-to-save/
God bless my primary care doctor. He takes a lot of “abuse” from me. Thing is, he really cares. I love that about him. He puts up with so much, he’s willing to go that extra mile. Sometimes I wonder why he does what he does. He is great with people and truly, genuinely, cares about others. He is great at his job and gives more than his best. I am lucky to have a doctor like him. I sometimes joke and say what did he ever do in med school to ever deserve a patient like me after. But I am glad he is there and knows how to help me, and is willing to do what it takes, all with a sense of humor. I appreciate all that he does and how much he cares for his patients. Thank you, Doc.
I skipped my usual dose of Lasix in the morning yesterday because I had an appointment with my primary medical doctor and it was such a long commute– and the CTA doesn’t have bathrooms! He was excited how much I was able to get the swelling down by doubling up on the water pills. Awesome! Continue the water pills and come back in a month to recheck.
Within hours of seeing my doctor I could feel some pain from a little swelling around my ankles. I took a Lasix. Shortly thereafter I started to feel wheezey. My breathing continued to get worse. Within six hours of my doctor appointment I checked the swelling level in my legs. It was 3+ to 4+ edema! That’s seriously not good! I didn’t feel good. I took two more tabs of Lasix. If I didn’t already have these water pills I would have had to go to the hospital last night. It was almost a little scary how I felt. I still have a great deal of swelling but my breathing is much better.
Moral of the story: This obviously means that when I have my next doctor appointment I *WILL* take my water pills that day and not skip no matter how long the commute!
Check out this photo of a sock imprint around my ankle that I took the day of my doctor appointment. The photo was taken a few minutes after taking off my sock and, believe it or not, the swelling had already started to fill in a little.
I saw my primary care doctor yesterday for follow-up on my swelling. As usual, my weight was checked. I lost about 4 lbs in 5 days being on the “water pills”! I still have quite a bit of swelling and he increased the dose from 20mg to 40mg. He did a brief EKG in office and also ordered a CT scan to be done before my next appointment in 1 week.
I got the CT scan scheduled for next-day and went to Evanston Hospital to pick up the iodine dye prep kit. On my way back to Chicago I got a phone call from the hospital, NorthShore University Health System, REFUSING to do the test because I have no insurance and money to pay for it! Sure, they will do a payment plan–as long as I have at least $500 to pay up front–and they will collect payment before the test. I turned in papers for financial assistance for the medical group and hospital just a week ago–and according to the person from the hospital who called me yesterday refusing the CT scan, those won’t cover the test because of the dates. I emailed my doctor and told him about what is going on. He is an excellent doctor and patient advocate! He is working on his end now to try and figure something out. With my PTSD issues I will get anxious if I am forced to take care somewhere else. I’m not sure if I could even do it because I am so sensitive to how doctors interact with me. It could blow my anxiety level and emotions through the roof with even just one “simple” thing! My doctor is great with me and understands my needs. He really cares for all his patients. If only medical/hospital bureaucracy did too.
I’ve had two doctor appointments this week: a new rheumatologist and my primary care doctor. Both are very concerned about the swelling in my legs. I have really bad pitting edema as shown below.
Yes, I am on a “water pill” but so far it doesn’t seem to be doing much. I go back to my primary doc this Wednesday, the 19th, and will see the rheumatologist on February 16th. The rheumatologist wasn’t much help when I saw her this week, and decreased one and took me off another pain medication due to my swelling issues. Pain management isn’t easy for me as I am allergic to most narcotics. In fact, there are no narcotics that I can even get as an outpatient. I can’t take acetaminophen (Tylenol) due to the potential for liver issues. So I am quite limited.
I’m not sure what else to mention at this moment so I will end this here. Hopefully it won’t be so long between blog posts. I will make extra effort to improve this in the future. Many thanks for following me. XOXOXO <3