ok, so i was in the optimistic phase when last blogged over a year ago, still needed certain outcome (for our business to recover and for our family to survive the crash) so couldn't talk openly about what all was happening..... now here we are, even lost my teeth and health in addition to our business and home during this recession that has changed our lives so dramatically....
with nothing left to lose (while acknowledging the need to protect my family's privacy), gonna say what i mean and mean what i say, dementia at age 47 due to medical causes and coming to terms with "getting my affairs in order" has it's benefits, in that i have become brutally honest and less concerned with what "people might think".... guess that's no surprise to those who really know me....
as a complication from a gastric bypass 5 years ago, i am unable to absorb the nutrition and minerals needed to sustain life through my digestive tract, it took almost 5 years (most of which was with $2500/month insurance) to pick up what was wrong...
as i complained about being worn out, exhausted, memory and concentration issues, we chalked it all up to the stress of running a demanding business and our big family, when in retrospect it is clear to see that i have literally been depleted of such basics as iron over an extended period of time, until my reserve tank was one point above empty aka "not compatible with life".... not having access to comprehensive health coverage, staying alive depends on continued iron infusions which depend on the continued benevolence of the drug companies without comprehensive health coverage.....
lack of oxygen has obviously caused damage in that all of my teeth died, am unable to be "up" for over 15-20 mins at a time, have chest pain most days and can't breathe if i get the least bit hot, am on a pain patch reserved normally for those in the late stages of cancer....
so if i come across as angry or frustrated on "political issues" like the right to healthcare, that's where it's coming from, the "system" in america hasn't worked, all i can do now is my part to bring about the needed changes by being brave enough to be honest and put a face, even if it's toothless, out there so people can see themselves in our shoes....
hopefully i can help give folks out there who are being manipulated by their fears a path to conscious living, of having the courage needed to live with the compassion espoused in churches every sunday to the real victims of our economic tsunami.... personally it appears too late for me, a lot of damage is already done, but it's what i've got to share out of all this mess....
i can't know for sure but i would be willing to place a bet that there are thousands and thousands of folks out there "circling the drain" without their families even knowing... for the past year, i've wished i could be the little birdie on the shoulder of anyone who would care enough to come to my funeral, to tell them to come visit now, not out of obligation to me or because i need anything from them, but truly not wanting to leave anybody behind who would have regrets or guilt, been there done that got the tshirt on that one, don't want anybody there saying "i wish i had known" or "didn't have a clue".... but how do you make that call without sounding melodramatic?
i was taught well to never openly talk about politics or religion, but now its personal.... as i try to reassure our 9 year old that everything's gonna be ok when it's obviously not, it's new territory for all of us from this point forward, whether or not we wanted to take this trip or not, it is what it is... let's get the conversations going to build momentum in the right direction, we can take this opportunity to be the peace we seek
Wow. Thank you for posting.
ReplyDeleteThis is horrible. Have you contacted your congress critters?
ReplyDeleteHi Mamisma--
ReplyDeleteI don't know whether to be more concerned over your illness and what caused it, or your medical coverage. But first, I do what your health to go in a positive direction, and I wonder if you can think positive--not give up--in spite of what you have been told? There are other doctors with other opinions, and I bet other treatments. There, maybe I sound naive, but I had to say it. Keep your chin up!
Second, about health care, I'm sure I must agree with you. I have MS, and have been fortunate enough to have had a job with good coverage. I will be retiring soon and will take coverage with me, but it will be different eventually (I'm not old enough for Medicare yet). My treatment for MS, (the MS has not done any obvious damage to me yet, other than tiredness and forgetfulness!), costs a couple thousand a month.
Next, take my brother who has no job and is on Medicaid to treat his severe depression and attention deficit disorder. His pills aren't cheap. If he gets a job that pays enough, he will lose his Medicaid, but it's likely his salary won't be enough so he can afford his medication (unless he is lucky enough to get a job that has insurance plus perscription coverage, and that seems unlikely).
Lastly there's my sister, who has been thinking about some stomach-limiting surgery. And...I have had four close friends who have already had it. I worried about them having the surgery, and I will worry more, now...
I think everyone in this country should be able to get the healthcare they need. Obviously, that means they need help, because you can't afford it without help.
It's a long way since I was a child and a trip to the doctor cost $8.00, including the cost of the shots...
Laurie
hi,I'm supporting this blog
ReplyDeleteHi,I have a story of our family's suffering, too. Half the story is about my husband who suffers from depression. Because of it he gave away 2/3 of the stock to the partners.who then booted him out.So we haven't had an income for 9 years till we sued them for the cost of our stock. He's on SS, big deal.We have 3 girls we help out with every spare nickel even tho they're between 25 and 34. But we don't have enough to help our oldest daughter get the surgeries she needs even though she lives in Hawaii, the social care state of the union. She took a bad fall in St.Louis when she lived there and 4 hospitals denied care because nothing was broken. However, the tendons and ligaments of rt. hand/wrist and ankle/foot were shredded. At least when she got to Hawaii to live she was able to get health care and food stamps.She has to go through a primary care doc(she' had 3) then is referred to a surgeon. This worked great for the ankle/foot surgery (the worst the doc had ever seen) but now her hand surgery has been postponed twice because of his vacation
ReplyDeleteand a predicted storm that didn't happen (she has to be flown from Hilo to Honolulu). Two weeks ago she got all the tests and mri done for the surgery and he turned her away saying that it was just cosmetic,COSMETIC!!! Her fingers are bent and she has no use of her thumb,and her forarm looks like it's been stomped on by an elephant,no muscle to fill in the space between bone and skin. He's willing to let her be crippled because of pressure on the doctors to do less surgeries. Then she needed dental work, just after that was canceled by the state. She went in and the xray showed a large pollup in her sinus draining onto her back teeth and two molars were needing to be pulled, they could do a root canal and save them, all her other teeth are perfect. They referred her to a surgeon to remove the pollup because it was causing all this mess and she got her tests and mri, went over to Honolulu and he turned her down saying "if I took out all of the pollups I see there'd be no insurance left". and she cried all the way home. So, people, it's all political now, it's in the hands of govt. bruocrats who should get help or not. Gina is back to square one and is going to start her fight for care all over again. If I had$30,000 I would pay for it myself,she's my daughter for God's sake. Be warned, if our health care follows the pattern in Hawaii it will be ok for a short time then one day some committee will decide if you really need the care. Not how you feel, you'll be on a list, like in Canada and just wait while your condition gets worse and maybe you'll die before they get to you. That poison in Gina's system has already caused much pain in her stomach and face but is known to cause heart disease and cancer. PLEASE PLEASE if you know the governor of Hawaii or someone who could put pressure to bare on this situation please get back to me. I feel so helpless and Hawaii is so far from Mo. Sunshine (haha old handle)
thx for sharing that sunshine, feel strongly that we have to speak up while we can....
ReplyDeletehere in Canada,you are right, it is a list, but they do get to you, eventually. No one in my family has had to wait too long yet. Except one time. During the wait for an mri for my husband's chronic headaches we went to Niagara Falls, N.Y. to buy an MRI. In the end it was naturopathic methods that fixed the headaches, once we realized that he did not have a tumour but a deep inflamation and cyst in the bottom of his sinus, which no MD could find, and drugs were unsuccessful to stop the infection or the pain. While many of us wait here in Canada, we spend money on naturopaths, which in the case of my family, has turned out to be a very good outcome. In my family's case, it was a stroke of luck because the Naturopathic profession understands many things the doctors and the medical/drug model simply cannot cure, they only drug the symptoms, and can't get rid of the cause of the illness. Clearly ,if someone needs surgery, they should have it. and even with the lineups here, no one gets turned away. Regarding your scarey predicament, Mamisma please check out www.prlabs.com This company manufacturers products that have helped many desperately ill friends of mine. We have to smuggle them into Canada as the government here protects the drug companies and has rediculous restrictions on herbal products and supplements. You will need to find a practitioner who understands these products, and 'pr' labs might be able to help you find a naturopath that can support your healing and get to the CAUSE instead of just drugging the symptoms. Darn it, I hope you don't give up and find a solution. You are such a brave woman, I am shocked and saddened to hear your story, and feel very lucky to have met you and your husband. Another individual who has helped my family is Adam at www.dreamhealer.com Adam has taught many thousands of people how to heal themselves. I have been following him for 5 years and he is the real deal. Healing best wishes to you, from Brian and Marilyn
ReplyDeleteHave you looked into disability? It is not just the income, but after two years you get Medicare. I've been on disability for several years and I'm very pleased with Medicare. If a treatment is approved you can have it -- unlike with private insurance which can pick and choose what is allowed. For instance, I was able to have Brachytherapy instead of standard radiation for my breast cancer -- five days as opposed to six months. Most insurance companies weren't covering it at the time so I was very lucky.
ReplyDeleteIt is shocking to read about your troubles and uplifting to note your positive tone and proactive attitude. You are a marvel.
thx merry, disability was turned down, appealed but lawyer warned it will take 2 years to get approved... then medicare will be 2 years after that
ReplyDeletePlease follow through on the disability. You will get benefits retroactively to the time you applied. That would go a long way toward digging you out. The lawyer should have told you that and encouraged you to stay with it. It is to his advantage also since he gets a percentage of whatever you are awarded. It's a one time fee and you won't even miss it since it's taken out up front. :-) Even if it does take two years, they will fly by and you will have a large windfall.
ReplyDeleteBlessings.
Merry
oh we're sticking with it, he was just realistic about how long it will take so we're trying to figure out how to live for the next two years.... rick is disabled too now with his kidney failure, shattered femur, etc.... our unemployment ends in dec and both our ss apps were denied, we have filed appeals... you're right, if i live long enough to see it, will be a good thing, lawyer said if not, they will still go to hearing so family will get the backpay
ReplyDelete