Botox

So…

Migraines.

I went today to get botox which we hope will help prevent my migraines. I have several friends who did it and had excellent success. The rate of people who are helped who have migraines similar to mine is really high. It’s basically my last resort – hoping it helps because I can’t take the pain anymore. Also, it will help the small forehead wrinkles I have started to get, and don’t think that isn’t a bonus.

Here is how my appointment went: I wasn’t really nervous until about an hour or two before the appointment, when I was sitting quietly at my son’s therapy and had an entire hour to think about it. I texted my husband that I was nervous and he said “well, it can’t get worse.” Which is very true, and honestly helped me feel better.

I had to RUSH from therapy to the drop in day care to the Dr office – basically driving 10 miles over the limit the whole way and hoping to not get stopped. I got there just as I was supposed to be checking in and ran in all disheveled and needing to use the facilities. 

After all that, the MA checked me out, made sure my blood pressure and stuff was ok, and told me the doc would be right in.

The pain intervention clinic I am going to is at the University Hospital, so the main doc has a bunch of Residents that help him. Some kid that looked about 19 came in to explain the procedure and tell me what the side effects could be. Actually he only told me one which was that since we were doing some in my neck, if they happened to give me too much my neck might have a hard time holding up my head. If that happened, just let him know next time. LOL. I asked if there were other side effects to worry about and he said not really.

I signed away my life.

Then the main doctor came in. The interesting thing about this guy is he is the doctor over the department and other than his residents which do things like taking histories and explaining procedures, he is the only one who sees patients. Most departments there have several attending physicians. In this clinic he sees every patient every visit, does every procedure, and helps make every treatment plan. Either he is a control freak or he is an excellent doctor. Or both. My money is on both.

So, my main pain doc comes in and asks me to lie down and cleans off my forehead and the front of my hair line with some alcohol stuff. He tells me the injections are a combination of Botox and Lidocaine. I keep my eyes closed as he explains the shot will pinch, and then burn as the meds go in. But he hopes it will help enough to be worth it. I said I hope so too. I kept my eyes closed as he did my forehead and hairline – I didn’t want to see the needles which looked pretty long when he brought them in. I am not afraid of needles – and I’m pretty used to the pain they inflict – but watching them come at my face is just something I’d rather avoid. 

He starts the injections and I have to say a few of the first round DID hurt. Not unbearable pain, but pain nonetheless. It didn’t last long though. He took a break between the first 8 in my forehead and the “next row” up in my hairline to let the lidocaine help make those less painful.

In all he did 28 injections. Some on my forehead, some on my hairline, some behind my ears, some about 2 inches up into my hairline on the back of my head, some on my jaw, and some on the back of my neck. I think he hit all of the places I get pain from migraines. The ones on my jaw and behind my ears hurt the most.

I had to scrub my forehead before I left because there were little blood drops even though he wiped them several times. A few of the injections swelled a tiny bit like a small mosquito bite. On the way home I wasn’t feeling well. Mostly kind of weak and shaky and feverish. I think I will take my husband with me next time to drive me home. I wasn’t sure I would feel well enough to take my son trick-or-treating. Though, of course, I would have muscled through it, I felt better after about an hour and a half. The only longer term problem I seemed to have was some stomach upset. I read online that flu like symptoms is a rarer side effect, but a side effect nonetheless. I always get the rare ones.

Tonight most of my head and face is numb. The doc said that it takes about 3 days for the Botox to really kick in and that my muscles in those areas may feel strange to start with. 

I have another appointment in 3 months. It is a longer acting muscle relaxer, but it doesn’t last much longer than that. 

Next month we are going to try some injections on my chest – steroids and a “long acting local anesthetic”. Hopefully that will help the pain I have from my chest surgeries – my sternum never healing.

I will keep you appraised of how everything works. The reason I write about the medical stuff is just in case someone comes along and it can help them prepare or find a new avenue to try. Migraines have impacted my life like I never knew they could and I want to help others if I can.

Birthday Party

My son’s birthday is coming up next month.

For his 3rd birthday which was a month after a major surgery we did Chuck e Cheese. I couldn’t handle much more. For his 4th birthday we did a jump place – with the big blow up bouncy houses. Also for the reason that it is much easier on me, you can accommodate a large number of people, and my son can have fun. For his 5th birthday he wanted one at home. It was more work, but it cost less and it was nice to be able to do games and have a pinata and such – when you do it at the pre-planned places they dictate what you can and can’t do for the most part. 

We also had to do a Russian party – which consists of serving a huge amount of Russian food and vodka and sitting around talking to adults all night while the kids destroy my upstairs and basement until seriously after midnight. I am trying to convince my husband it was too much work for his mom and too tiring for me and that we don’t need two parties. We will see how that goes. If we do have a Russian party this time, it will be the week AFTER his birthday so I don’t get so exhausted. 

This year I couldn’t decide what to do. I haven’t been at my best, so I don’t want to over do it. But I also don’t really want to pay so much and have kids running around screaming and tons of noise like at the cheese.

I suggested a few things we could do and let him choose. He had a hard time choosing, but he finally decided to do an at home birthday party with ninjas as the theme.

After only an hour or so of pinterest, I found there were plenty of fun ideas and that we could do at home. I started to plan.

THEN my son backtracked. He said he absolutely wanted to do bowling. He had to do bowling. The more I suggested ninjas (because by now I am excited about ninjas) the more he demanded bowling.

Today I booked a bowling party. With lazer tag and arcade games. Woo hoo.

I am still bringing some ninja decorations and party favors. All that pinteresting will not go to waste I tell you.

Perfume

Russians love their perfume and cologne. If you go to a Russian get together you are sure to walk away smelling like several different types. I don’t even bother to wear it because they all mix together so nicely on my clothes. Plus they often give me a migraine.

So. My husband’s aunt sells perfume in Russia. She’s been doing it for years and it’s a good little side business for her. She had asked us to look for places to buy perfumes on sale to send to her. I kind of let it slide. A few weeks ago she asked my FIL (her brother) to look for Victoria’s Secret cosmetics. She had a specific request that we couldn’t find.

This week my FIL brought me the name of a brand she wanted. But not just any of their perfumes. A special perfume. I looked it up online. The designer only has one store in the US – in Beverly Hills. We don’t live near there. At all. But she does sell some of her product through places like Neiman Marcus. Apparently FIL had already gone looking there in person. I looked and looked on the internet. She didn’t have the perfume listed anywhere anymore. She had a few other scents listed, but not this signature scent “which comes in a special box.” Maybe she still makes it for overseas purchase. I don’t know. 

Two days later my husband says “Do you know Judith Leiber?” 

I say “I already looked for that crap. You can’t buy it in the US anymore.” 

He says, “My dad asked me to look for it. My aunt wants it.” 

I say, “I know. I already looked for that crap. You can’t buy it in the US anymore even on ebay.”

He tells his dad you can’t buy it in the US anymore. Even on ebay.

Today, 6 days later, my FIL interrupts my very important pinteresting and asks me how to find Judith Leiber’s whole collection. I go to her website, click on accessories, click on fragrance, and show him – she doesn’t offer it anymore. We have shown him several times now.

I swear to you, if one more person asks me to find Judith Leiber’s signature scent which apparently doesn’t exist anymore, I will go insane. 

 

PS, just for you English as a second language people: ebay is pronounced EEE bay. Emphasis on EEE.  Not e as in elephant BAY. Emphasis on bay. Skype is pronounced skyp. Not skypeeeee. Amazon.com is pronounced A ma zon, a as in apple, dot – o as in ostrich, com o as in ostrich  NOT am A zone – a as in account, zone as in end zone, dot – o as in ozone, com – o as in coma. If you understood that, congrats.

Medically Induced PTSD

I want to talk about this, but I don’t even really know where to start. So, as always, I will just start. 

If you look up the causes of PTSD – post traumatic stress disorder – some of the causes listed are surgery and being diagnosed with a major illness. 

Now, when I first learned about PTSD back in college,  I remember thinking something along the lines of  “Surely being diagnosed with, say, cancer, can’t have the same effect on the body and mind as going to war or being kidnapped, can it?” I remember kind of poo pooing those “lesser” causes of PTSD. It’s strange how we remember things later when they actually pertain to our lives instead of being some thinking exercise. 

It’s true. Some people who go through scary medical stuff have PTSD too. In fact, “You can develop post-traumatic stress disorder when you go through, see or learn about an event that causes intense fear, helplessness or horror.” 

I can say all of those emotions were brought to the surface in my life when I went through 3 years of surgery, treatment, and tests for cancer. 

And if I don’t have PTSD, then what is wrong with me?

I am paranoid about every little lump and bump I get. I took my son to the doctor more times the first 3 years of his life than many children go to the doctor in their lifetime. Luckily his pediatrician realized I had a reason for my paranoia and gave me some space to figure it out. I am constantly waiting for the other shoe to fall. I am constantly waiting for someone to tell me what medical mystery we have to battle next.

As a friend said recently (paraphrasing) “it is always at the back of your mind, lying to you, telling you that the cancer is still there – just waiting for you – just waiting to ruin your life again. That it doesn’t care what the tests say or what the doctors say – the doctors were wrong before and they can be wrong again and again.” 

I have migraines. Anyone who knows me knows this. They control a large portion of my life at times. Right now is one of those times. I have had a migraine for over 2 months. Literally unable to function at a normal level. Or even my normal subnormal level. I recently underwent a whole bunch of tests to rule out some scary stuff they were worried could be causing the migraines and other symptoms. Guess what? It all came back normal. Perfectly normal. So now, instead of feeling relief, I feel like I was put through these procedures for nothing. I feel like the doctors are missing something – like they did with my cancer for who knows how long. I am feeling violated and painful and down. Because I received a decent bill of health in one area of my body. How does that make sense? 

I distrust the medical community. I do. It isn’t just that my doctors missed the boat on two major problems in my life for a long time. It isn’t. It is partly that they didn’t tell me what my life would be like AFTER all of this was done. I know many people who have had thyroid cancer. The internet is a wonderful thing. It brings people from all over the world together to help each other. I am a member of several online thyroid cancer support groups and I have found the consensus to overwhelmingly be that most people who go through thyroid cancer are not the same as they were before. Not at all. By most I mean that I can count on one hand the number of women who feel like their old selves even years and years out from treatment. Out of over 400 women I know. One hand. Most complain of extreme fatigue and a myriad of other health problems ranging from digestive problems to gall bladder disease. I know, is it causation or correlation, right? These are health issues that many of us have in common and have been told by doctors that they see patients with similar complaints after thyroid cancer.

No one told us it was going to be that way. Most of us were told by our doctors “we will take out your thyroid, you will take a pill every day for the rest of your life, and you will get right back to life.” It simply hasn’t happened that way for a lot of us. As Sheryl Crow said: “no one said it would be easy. But no one said it’d be this hard.” I mean, it’s cancer for goodness’ sake. Did we think it would be a walk in the park? No. But no one told us our lives would change so much either. 

So, then, I also feel like not only were my problems missed, but my doctors either don’t honestly know what happens to people after thyroid cancer, or they don’t believe us, or they lie. And I truly have had some wonderful doctors. Truly.

Yesterday I was talking with a mother of twins. Her daughter had problems with her intestine when she was born. They fixed that and of course it caused other problems. Her stomach didn’t grow, her digestive system never got moving. After a couple months told the parents they had two choices. Put her on a feeding tube which would allow her to go home, or leave her at the hospital for several more months to have  the staff work on her feeding – getting her digestion/mouth movements/stomach going. They told the parents it would be better for her to be at home with her brother and for them to work with her at home. Also, the risk of infection is higher in a hospital – even in a NICU. So, the parents took her home. It has been more than 3 years. She has not grown normally and she is still on a feeding tube. She doesn’t even have the proper mouth movements to eat. The mother told me that if they had told them how difficult the switching over from feeding tube to eating real food would be, they would have had her stay at the hospital, taken turns going to see her and help with her therapy, and brought her home able to actually eat. IN FACT they were not told that there was even such a thing as feeding therapy – until it had gone on so long she wasn’t growing properly. The same thing happened to me. The doctors thought my son was just picky until a school specialist helped us find out what was going on with him. Only THEN did we find out about feeding therapy.

I am a big proponent of being your own health advocate. I believe in doing research about any health issue I have. But there is a time at which the system is no longer helping in the ways it should. I have spoken about my frustrations with specialized medicine and for profit medicine in this blog already. When does the frustration get in the way of healing? When does the stress cause more health problems? When is it no longer helpful to go from doctor to doctor seeking answers and finding none? Not wanting to give up and not wanting to feel so terribly anymore. These are also things that add to the PTSD, I believe. 

One thing I have found is that after fighting with all your might against something – going from one adrenaline driven proceedure/surgery/treatment to another – that when they tell you that you can relax now, that you can take a break, you don’t believe it. Your body can’t just go from fight or flight to rest that quickly. And your body still hurts or is different, so how do you convince it that it can take 5? 

Having a major illness changes your life. I know I gained some valuable insight during all of this. I know that not every lesson/change was bad. But I also know that I wouldn’t do it again for all the lessons in the world. If I could change the past 6 years in any way I want, I’d make myself healthy. 

I’d give myself the strength and ability to enjoy more of my son’s life and to feel like I can do all I want with him.

Medically induced PTSD? I think it’s real. I think people need to find help when they have it. I think that it’s time we started warning people about it and about their lives changing so drastically so they can try to prepare and seek help ahead of time. 

 

On Getting a Cranial Angiogram

So….

I have migraines. I have talked about them before.

I have had a migraine for over 2 months. I have gone to the ER several times in that time frame. I have gone to Urgent Care and my doc several times. It has sucked. Bad. Pain wears you down. It just does.

I have been seeing a new pain management doctor. (I fired my neurologist after he did absolutely nothing to help the migraines and then called me a drug addict.) He gave me 2 things that have helped a little. He also gave me an appointment to do Botox next week. I waited 3 months to get in to see him and I also waited another month to get in for the injections.

I am hoping beyond hope that this will be the thing that helps. Honestly at this point if someone told me walking on coals or being hit in the head with mangoes would help I’d give it a shot. Pretty sad when you get desperate to feel normal. Or even just free of pain.

HOWEVER – at my last ER visit they decided to do an MRI to make sure I wasn’t having a stroke or something. Usually they just treat and release because we have done so many tests. BUT they felt they needed to look since it’s been so long with this particular migraine.

On the MRI there were some abnormalities in both my arteries and my white matter. The abnormalities in white matter can be numerous things. But the abnormalities in arteries can be serious.

SO, my PCP sent me to a Rheumatologist. She did a whole bunch of blood work and scheduled me for a cranial angiogram. Not wanting to go through that if it wasn’t necessary, I asked, “Do you think this is really necessary?” She said if it was her she would do it. Because the biggest thing we wanted to rule out – vasculitis – is very serious and deadly and has to be treated right away with serious meds. Ah. So calming.

SO, on Tuesday I had a cranial angiogram. Basically they start at your femoral artery. They poke a giant hole in it with a giant catheter and then run that all the way up your body IN YOUR ARTERIES to your neck. (Ok, the doc said the catheter is really smaller than the ink refill on a ball point pen. But it feels bigger.) The upper part of your neck. LUCKILY they don’t stick it in your brain like I thought they did. THEN they push some dye into your brain and they take pictures of it with a fluoroscope. I was very happy that this particular doctor believed in pain killers during the procedure and sedation. I wouldn’t have argued about having some pain killers after, but you take what you can get. I hear that some places you have to demand sedation. I wasn’t totally under. I remember a lot of it – and I remember what it felt like to have that dye in my brain. Which was hot and full and uncomfortable.

The nurse said I was a perfect patient. I don’t think anyone ever said that before. So that’s good.

When the procedure is done you have to lay flat for 3 hours and then you can sit up for 1. You can’t stand up, even to pee apparently, until that 4 hours is over. They send you home with instructions to lie down the rest of the day and take it easy for a few days.

*Apparently* so you don’t bleed to death. I mean, it is the femoral artery. It only takes a couple minutes to bleed to death from it.

When we were done the male nurse put pressure on my wound for 20 min. And I mean REAL pressure. I am not sure I could put that much pressure on someone for long if they were bleeding to death. Then the nurse checked it every 15 min or so. Then my husband was told to check it every hour at home until bedtime. These people are SERIOUS.

What they don’t tell you: It’s not the most pleasant thing, but with the miracle of modern drugs it’s not so bad either. You will bruise. Badly. Ice helps. If you don’t have a partner or friend willing to look at your privates and make sure you aren’t bleeding to death, get a good hand mirror ahead of time and have it handy – cause it’s not that easy to really get a good look down there. It’s hard to eat lying perfectly flat. However since you didn’t get to eat the previous 13 hours or so, you will want to. I did get grilled cheese, fries, and a drink with a straw to work. And my husband “lovingly” fed me dessert. Which I didn’t need. But it sure made me feel good.

Bottom line: The angiogram was clean. Which made me feel like we did it all for nothing. And kind of violated in a way. Which all procedures seem to make me feel since my big medical battle. But that’s a story for a later date.

Exhausted

Do you ever get exhausted? Like truly, in your bones and muscles exhausted.

I am exhausted in every way possible today. Physically, emotionally, mentally, “spiritually”, and all other ways exhausted.

I am exhausted from medical problems. I am exhausted from doctors and tests. I am exhausted from pain. I am exhausted from trying. I am exhausted from all I need to do and can’t. I am exhausted from my emotions. I am exhausted from the family I live in/around/with. I am exhausted from melancholia. I am exhausted from wanting desperately to be a good mom and knowing I am failing every day for the past several months.

I am exhausted by politics and anger at the way other people think. I know, not everyone thinks like me or feels the same way I do. But I kind of feel like they “should” about certain things. Even though I know that’s also too much to ask.

I don’t know how to fight the exhaustion anymore. 

What I REALLY need is a day to spend in bed. All day. Not at the hospital getting tests and then in bed in discomfort. Not a day spent knocked out from migraine meds. Not a day that I have to do a whole bunch of stuff but can’t so I feel even more exhausted. I need a day. To myself. To sleep or read or watch Dr. Who in bed all day. With no worries about what else is happening. 

If there is any kindness in this universe, please let this happen.

American Health Care System part 2

I spend a lot of my time dealing with health care. I have 3 dr’s appointments this week, and possibly a big ol’ test – if we can get insurance to approve it ASAP. So I think about health care a lot.

Today I was discussing live giving treatments and costs with a lady in a waiting room and it made me so angry I could barely see straight. Between that and a certain facebook post about a certain congressman who said “If you have cancer, and no insurance, sell your car.” Which made me vomit in my mouth.

I have a problem with our health care system.

Did you know that there are places in the civilized world where people think that internet access should be “an inalienable human right?” That’s right. In May of last year a United Nations Human Rights Council tried to decide whether or not “internet access” is a human right that should be defended and given to people in all areas of the world and, some would argue, for a minimal or no cost. That’s right. Internet access is considered by some very smart people of high influence to be a human right. Something we should not have to live without. Their arguments are sound – they list everything from sounding the alarm and getting info in a natural disaster to education in their arguments in favor.

I live in the United States of America. People are not even guaranteed basic health care by our country. In fact, we kind of have a “you can’t afford it? Well, too damn bad.” attitude in general to health care. We let children, mothers, elderly people, people just like you and I die every day because they can not afford health insurance.

I have to say it. I have to say it once – and I don’t care if you feel the same way or not.

HEALTH CARE SHOULD BE GIVEN TO EVERYONE. REGARDLESS OF WHAT THEY DO FOR A LIVING, HOW MUCH MONEY THEY MAKE, AND WHETHER OR NOT THEY CAN FIND OR AFFORD INSURANCE.

Guess what? Guess what I also think? I think health insurance companies are a racket – and I think they are killing people. They drive the costs up, they under pay doctors and hospitals so they have to charge more to cover costs, they choose what tests/treatments/help you get. THEY are the death panels.

(no offense dad – you know I buy life and auto and renters and health for my baby and husband. but come on! you know how much the health costs and how little it can provide for certain people IF they can afford it.)

I want to tell you a couple stories about some real life people. People either I personally know, or know through another person – one degree of separation or less here.

Story #1. My dear friend had an uncle. Her Uncle John died this summer of liver failure. He needed a transplant (now before you get all “well he did it to himself” on me, Uncle John had Hep C, not alcoholism – and anyone can be exposed to Hep C – and please get over this whole “he did it to himself thing” while you are at it) and he couldn’t get one. Uncle John’s story in her words: When he was first diagnosed with hep c his liver was healthy, if he had healthcare he would have had regular monitoring and outpatient treatments when his numbers started to change. But because he didn’t have healthcare, by the time he went to the ER with swollen legs 2 years later, he was in end stage liver failure. This man worked for the laborer’s union for 25 years, he at one point fell off his roof and shattered his pelvis, between that and multiple back problems from working in construction all those years, he couldn’t do it anymore. He had good healthcare through the union, but once he couldn’t do that type of work he lost it. But he continued to work. After several personal problems that were no fault of his own – he moved closer to family and started working temp jobs. With no insurance. When he started to get sick after 2 years, he was forced to go back to his old state where they at least have free clinics and low income housing. There he signed up for SSDI, and even though he was terminal, he couldn’t get on the transplant list without health insurance. SSDI took a long time to process, even though he hadn’t really been able to work for years and was terminal. He finally got SSDI (and medicare coverage)  9 months later and was put on the transplant list in May, the first call he got for a liver ended up being too fatty, the second call he was already in the hospital with cardiac arrest and not able to have the transplant, he died August 18th. He was 48 with 2 sons under 24. He left this world with nothing. He still hasn’t even had a memorial. I can’t believe people have to live and die like this in the greatest country on earth. I am so ashamed to live here.

Uncle John was a hard working man, living the American dream – work hard, do your share, provide for your family, get yourself a little money, a little happiness. And he died poor and abandoned by his country and it’s health care system.

American exceptionalism is the biggest lie I have ever heard. Or it has warped from “we are creative, we are ingenious, we come from many different backgrounds, and we use those differing viewpoints to our advantage” into “screw you, I will take care of myself and only myself.” One of the two.

2. My mother had insurance. She had good insurance, all her life, through her work. She even had veterans benefits if she needed them, because she had served in the army. She didn’t need them though, because she had good insurance. My mother was really sick the last 10 or so years of her life. They treated her for several different things that probably weren’t what was actually wrong with her. She had a couple major procedures done in that time, she had surgeries and babies and illnesses over her lifetime. She got a lot out of her insurance. But then, at the age of 56 or so, she was diagnosed with early onset alzheimer’s disease. She wasn’t able to work anymore. She took early retirement. When you take early retirement, sometimes you can’t get insurance through them anymore. She went on disability, but she couldn’t qualify for medicare until 2 years after her disability took effect. She had to start buying private insurance. It was expensive, though not as expensive as the option to pay per month for the insurance she had through her job. They soon found out that many many things weren’t covered. Or weren’t covered well. Treatments, hospitalizations, doctors in other states. All not covered or undercovered. Luckily her retirement was decent or they couldn’t have paid for all of her medical expenses and after she died my dad would have been drowning in debt.

3. I had insurance with my parents until I was out of college and age 23. I was lucky that I was still on my mom’s insurance when I had to have an emergency gall bladder surgery and had to stay in the hospital for 28 days due to a staph infection in my belly. Then for years I wasn’t covered. The jobs I had either didn’t offer benefits (nannying, maid service) or if they did, they kept people at just below the minimum hours to get benefits – like at a retail store. I started working for our local school district and was able to have good benefits for a relatively low cost. When I changed jobs I found one with benefits as well. For the first time in my adult life I had insurance coverage for 4 years in a row!!!! Then I got pregnant, and I was very ill. I was on bedrest during my pregnancy and had to stop working. I paid for the COBRA plan I was entitled to, but it was expensive – over $400 a month for just me. My husband was self employed and had no insurance to cover me under. I am glad I stayed on it, because not only did I have the baby, but I had cancer as well. I ended up fighting over 3 years against that cancer, and I just recently had my first good test results. 6 years after my diagnosis. During that time I paid for COBRA coverage as long as I was allowed by law (18 months) and my son either qualified for CHP+ – low cost health insurance for kids through the state which was very inexpensive – less than $100 a month, or was on my husband’s work insurance when he left his self employment job for one with benefits – that paid less. The benefits he has are expensive – it has always been over $300 for the both of them. At one point we were paying over $700 for the three of us to have health insurance (we couldn’t just buy my son insurance through hubby’s work – it doesn’t work that way – you have to pay for both). When my COBRA ran out I had to apply for the state’s “high risk” insurance pool – for people with pre-existing conditions that don’t qualify through their employers, for people who have exhausted their COBRA, or for people who lost coverage at some point and can’t get it back because of the gap in time where they weren’t covered. That was also expensive – $365 a month. FINALLY I applied for disability at my parent’s insistence  I had hoped I would be able to get back to a normal life – back to work – back to my old self. But it hasn’t happened. Through disability I receive medicare. It is sometimes difficult to find a new provider if I need a new specialist. If I ever want to go back to work even part time I will loose that benefit. But otherwise I have been pretty happy with the coverage I get. I have to pay for a secondary insurance, or pay 20% of all of my costs. Plus co-pays. My secondary insurance is just over $200 a month. Plus I end up paying for over half of my yearly prescription costs. Cash value – out of pocket. There is this thing called the coverage gap or the donut hole – whomever made that up should be brought back to life and tortured and killed. I don’t know how elderly people on medicare afford their prescriptions. No wonder people joke about them eating cat food. It isn’t a joke.

Here you have 3 examples of people who worked hard, had medical coverage. Who tried their best all their lives – or most of their life in my case – and still, the system failed us. It failed us when we needed it the most.

Newsflash, people – MOST people who need medical coverage look EXACTLY like you. Perhaps they had a set back – lost a job, were laid off. Perhaps they do work that doesn’t generally give out benefits. Perhaps they got sick, lost coverage, retired, got old. Perhaps they were born to parents who are struggling and don’t have benefits. MOST people who need medical coverage look just like you. And most who die from not having medical coverage ALSO look just like you.

Beyond all this – beyond the actual buying and selling of health care “benefits” – there is a lot of behind the scenes “approving” and “disapproving” going on out there by companies who don’t care a lick about you and look at you as a number. One of the diagnostic tests I had done that saved my life – that told us I had more cancer BEFORE we did the treatment that makes it almost impossible to take out the tumors after the fact without leaving a lot of cells in there because it makes it brittle – that test was not generally covered under insurance claims. In fact, the radiology department suggested it and when my doctor called to get it pre-approved he had to talk to them for hours to get it approved. Most docs simply can’t do that. They don’t have time. You can’t do it for yourself. The insurance doesn’t allow it. The radiology guy told me most people just DON’T EVER KNOW they could and should be getting it because docs know it isn’t approved most of the time.

How would you like to know that your son or daughter died because a test or treatment that usually isn’t approved was simply overlooked or not applied for, because it is too costly and time consuming to do. And that you were never even offered it- to pay for yourself or to find a way to make it happen – because most people can’t afford it? It happens all the time. And by all the time, I mean daily.

We have to be our own advocates. Do you know how hard it is to find the energy to make this happen when you are sick? Do you know how much energy it takes to research, make calls, contact doctors and hospital departments and stay on hold with insurance for hours at a time? I do. I could barely take care of my son and my physical needs, much less do all of that, and yet I had to.

In a health care system that is for profit, we all loose. We all loose out on quality care, time with our providers, treatments that could help but either aren’t FDA approved or aren’t insurance approved, we loose out on good medicines because the drug reps get into the doctor’s heads. We loose out on time with our families when we are at our sickest and we loose out on being able to concentrate on healing and fighting for our lives because we are focused on bills, insurance, doctors fees, hospital break downs, etc.

The people I know in countries with socialized health care get GREAT health care. The best – as good as mine ever was and better in some cases. I have talked to them about their cancer care, their birthing care, their pediatric care – they are all happy with it. In some places – like Canada – you can even choose to buy different coverage if you want, but you also have a universal system if you can’t afford that.

I know a lot of people are afraid of universal health care “taking away their choices and taking away their rights.” Honestly I think the biggest problem is that many people don’t “want to pay for other people’s health care.” I have heard this a lot. To them I say first: What is wrong with you? Have you no human decency? YOU would rather have children and elderly people dying painful deaths than to pay into a universal healthcare system? Second: who do you think pays for the under or uninsured right now? We all do – in higher premiums, higher hospital and doctor’s fees, and emergency medicine costs. We pay for it already.

Why not build a system that works better and helps more people for the same costs?

If you don’t like “the Affordable Health Care Act”, that’s fine – I respect logical discussion about this issue. But don’t just shut down the entire discussion because you are afraid. If you have better ideas FOR THE LOVE OF GOD, bring them up, pass them around, take them to your representatives, go to congress. DO IT. Because this system is broken, and so many people have been brought into hysterics from the lies about “death panels” and “not being able to make your own health care choices” that we can’t get into this new system to even see if it will work.

I don’t like to be hysterical, but you know what? Right now our health care system warrants hysterics.

It’s broken.

People are dying.

Figure out how to fix it.

Cause this shit is broken.

Health Care in America

There are a lot of discussions going around lately about Health Care in America.

I have to be honest with you, I don’t know how to fix it. I’d like to be part of the solution, but I just don’t know how to fix it.

I don’t necessarily want to talk about the big debate right now – in this post. I don’t want to alienate people so they miss the rest of the message – so I will just touch on it briefly and then move on. Right now a war is being waged that involves the ability to pay for health care. This IS a big problem. While I think that decent health care should be readily accessible to all people, regardless of income, benefits at work, cost of treatments, and all the other variables, I don’t necessarily know how to change that. I would LIKE for us to have a universal health care system, and I don’t understand why people are so afraid of it. I also see that it will be a huge change and would take many years to reach that point if we could convince enough people that it would work. The universal systems I have read about, heard about, talked to friends in (or from) other countries about – they all seem to work well and they all seem to help the people who use them. That being said, I’d like to talk about some of the other problems with our health care system.

I have had a lot of experience with the health care system in the US. I have had several serious diseases/ailments over the years, and I have also had some small ones. I had cancer for over 3 years. 4 surgeries for it, one radiation treatment, and many many tests/studies done for it. When I was younger (early 20’s) I had my gall bladder out. It took the doctors almost a year to diagnose that and by the time they got in there, it was gangrenous. I went to the ER in the middle of the night in so much pain I literally couldn’t walk, I had a fever of 105. I felt like I was dying. They went in the next morning. I got staph infection in my abdomen and spent 28 days in the hospital. We thought I might die. I have had 8 surgeries in my life, I have had numerous smaller issues, and I have some chronic conditions now – constant migraines, constant kidney stones, and several things we are “still trying to figure out”. My family has had plenty of experience with illness too. My mom had several chronic conditions. Some of which there are no cures or real treatments for. My dad had major surgery for prostate cancer about 3 years ago. My sister in law was born with a heart condition – and I believe she still has some lingering effects even though her surgeries were when she was very small. My son has had some therapies he has needed, though he has luckily been very healthy. knock on wood.

My experience with doctors and their assistants, etc has been mostly positive. I trust and like most of my doctors. I have had 2 I had to fire in the last 6 years. I didn’t feel badly about it and I reported them to the appropriate boards because I felt they had done things that put my life/well being in jeopardy. 

My favorite doctor of all time – the one who gave me my cancer diagnosis, did my first cancer surgery, scrubbed in and assisted on my second, and eventually decided he needed to pass me on to another doctor with more experience in difficult cases – is the epitome of what a doctor should be. Good bedside manner, excellent surgeon. Heart of gold. He came in during 2 different blizzards to make sure I was doing well. The whole city was shut down after my first surgery and he had a friend let him borrow a giant truck to make it to do his rounds for me.

But, I still see problems. One problem I see is the trend toward specialism. (is that a word?) My primary care doctor (family doctor) is good. She looks into things, she makes sure she is looking for zebras and not just horses. (the old saying “when you hear hoof beats no one looks for zebras, just horses” applies to medicine rather well.) She tries to look at me as a whole person. But she also believes that some things should be referred to a specialist. I now have 6. Some specialists are great. Like the ENT that I mentioned above – my favorite doctor. The problem with specialists is that they are too specialized. I went to a voice specialist after my vocal chord was paralyzed. (who by the way was wonderful and helped me very much with something that severely impacted my life) I did a swallow study and we found a problem with my swallowing below the larynx. I asked him what we do about that. He pointed to his adam’s apple and said “I don’t really know. I deal with everything from here up. The GI deals with everything from here down.” I was dumbfounded. And he didn’t even refer me to a GI. I have had many specialists do this same thing – tell me that isn’t their area of concern and never follow up with it afterward. I think it is wonderful we have doctors that specialize in certain parts of the body – especially the more complicated “body systems”. But I also think that there is a lot of breakdown in communication and the only way a system with so much specialization can work is great communication. If one doctor doesn’t tell a main doctor what they are thinking, and that main doctor doesn’t look at the rest of your info to make sure it sounds like it makes sense, then how will anyone know what is happening with you? I find a huge breakdown in communication in this system right now. I am actually moving a lot of my care to the university hospital so that all my info is one one place, even if it’s in different clinics.

Another problem with the healthcare system that I am glad to see changing some, is people not being an advocate for themselves. An elderly relative of mine had cancer. It was during a hard time in her life – her husband had just passed away. She could never tell us what was going on with her cancer, her treatments, her plan of attack. She told us “I just do what my doctors tell me to do.” In my opinion that is very dangerous. Yes, we would all like to assume our doctors are on top of things and they will follow up and provide us the best care they can. Most doctors have thousands of patients and no matter how well they know you, they aren’t thinking about you out all the time, or even making sure their orders are being followed through on. I believe that my thyroid cancer would have continued to go untreated if I hadn’t gotten down right insistent and rude with my doctors. When I was pregnant I had a large lump on my neck. I went in a total of 6 times (that I can remember) to a total of 3 doctors over the span of 6 months. They all told me the lump was just a swollen lymph node and if it didn’t go away in a couple months to come back. Which I did. And they said the same thing. It got bigger and bigger and scared me more and more. I finally refused to leave an office until the doctor (not his assistant) came in and looked at it and told me what tests we were going to do. And my mom was standing there with her “don’t you mess with my kid” look. And I was 8 months pregnant and half hysterical. They finally decided to ultrasound it. If I hadn’t done that, I might have died from it. It was very aggressive and spread a lot. I have been having migraines for years. I had aura migraines until my second cancer surgery. Then for some reason (no one can explain) I started having the painful ones after that. I mean, pain like I can’t describe. Laying on the floor wailing, vomiting, not able to walk pain. ER visit after ER visit. Doctor after doctor. Neurologists, scans. No one could prevent them. Though we did find I was low in magnesium and taking that has helped some. We also found a “cocktail” that helps with stopping them – one for home, one for the ER. Sad that I can tell the docs exactly what I need in my IV. Sad that I know my veins have lots of valves and this one and that one aver really scarred up, so try this one instead. But no medicines have helped prevent. I recently had another ER visit. They did an MRI and came in and said “everything on the MRI is good, let’s get this migraine under control and get you home.” I have learned to ALWAYS ALWAYS ask for the report from any test. Especially scans. What this ER doc must have meant was “there is nothing we need to do right now in the ER tonight, but there are several things that you should follow up with your doctor on.” Because there are several things I need to talk to my doctor about in this report – one of which could possibly explain several the migraines and other chronic problems that have been brushed off over the last few years. For reals doc? “it’s all good?” Come on. Any normal patient (that hasn’t been through hell and back with the health care system) would have said “ok, glad it’s all good, give me some pain meds” and gone home. 

Please, people, please, be your own medical advocate. Be one for your children. Be pushy. It’s your HEALTH. Be demanding. Follow up YOURSELF. Even if it takes several (or dozens) of times. Go with loved ones to appointments, take notes, remember what the doctor said. My husband is so bad about this. He has NO idea about medical stuff and doesn’t really care to try. I have threatened him with his life that if for some reason our son ever needs long term medical treatments, and I’m not able to be there, that he will take notes, look stuff up, ask his doctor friend for help understanding, keep a file of all info, make sure he knows what meds help and what don’t. ETC. I can take care of myself, but he better be there for my son. My mom used to go with me to my cancer appointments, which was good. Let me tell you – when they say “well, I’ve got bad news” your mind just shuts down and all you hear is cancer, surgery, treatment. You have no idea what they are actually saying. Help your loved ones, advocate for yourself.

http://www.webmd.com/healthy-aging/features/be-your-own-health-advocate

If you have to, see another doctor for another opinion. And another. It is necessary sometimes. 

If you “know something is wrong,” please, don’t push that feeling aside. I “knew something was wrong” with my gall bladder and my thyroid cancer. I let both go on for too long. The bottom line is you CAN’T rely on a system that is disjointed, that is uncommunicative, that treats a thousand people that “look” just like you every week. You have to take care of yourself.

Read up on your symptoms, diagnosis, treatment options, dietary concerns, lifestyle changes that can help. Don’t self diagnose. Do find out what your options are. Do try to puzzle together different symptoms that don’t seem related but might be. Like migraines and petechiae. They CAN both be related to vascular disease. Which no one has put together in me until now, when I read my own MRI report. I looked it up and found I have several symptoms. It may not be what I have. It may not be the cause of my migraines. It might give us more clues, or it might be off on the wrong track. But you can be darn sure I am taking this report straight to my doc, reminding her of my petechiae, and telling her to figure out what is going on. 

Our current system also treats instead of prevents. Oh sure, doctors tell you to loose weight, eat a heart healthy diet, exercise. They scrape your cervix, or feel your breasts, or make you cough, or put a glove on and ask you to bend over every few years. But do they truly focus on prevention? No, most doctors are so busy running behind people who already have life threatening illness to even work on prevention. In other cultures (mostly eastern) the focus on prevention is so much higher. Herbs and vitamins and certain foods are used to help keep people healthy, instead of treating them. The community exercises together, they all eat fairly well, they all encourage each other in these things. Families stress exercise and eating well. They teach their children discipline of the body and mind. We, as a culture, have fallen way behind in this. Way. Most doctors don’t even know what vitamins, minerals, or herbs can help with certain problems. 

I have not been party to many other culture’s health care. I have talked to friends from other countries or who have lived in them. My husband and his friends have talked to me about the Russian/Slavic countries health care. There they are also more preventative and less invasive in treatments, if possible. They also seem to have much less specialty and one doctor that follows all of your health care. It can be harder to get good health care in some areas, and you may have to travel for a good surgery, etc. It is a cash up front business. My FIL needed heart surgery and had to scrape together $35,000 just for the surgery – not including the tests and such. I know, you are thinking “$35,000 for heart surgery – that’s a deal!” Here the same surgery would have cost over $100,000 and his included a 10 day stay in the hospital mandatory. Ours would kick you out after 3-5 days (most of my surgeries were 3 day stays, my chest was 5). But to pay in cash is much different than to pay with insurance and through co-pays. They also seem to focus more on natural types of treatments or cures.

I think it is time for a revolution. I think most doctors would like to see some changes too. The insurance industry and drug companies and FDA have their hands way too deep in the cookie jar. The doctors have their hands bound by red tape, approval letters, and inaccurate drug studies. Yes. I said it. The system is corrupt and it has to change.

Please, help me find a way to make that change. 

 

 

 

 

Domestic Violence

October is domestic violence awareness month. 

That’s right peeps. I’m writing about domestic violence. It’s funny, cause when I started this blog it was meant to be funny, light, a way to release my feelings. Instead I end up writing about suicide, rape, prisons, domestic violence….

Well, one must follow where one’s muse goes.

So.

Domestic violence.

This is a tough tough subject. Part of the reason for that is because it is taboo to talk about. People don’t want to talk about it. People don’t want to say that they have been abused, or that they have abused, or that they have witnessed abuse. They don’t want to talk about why they stayed, or why they left, or why they can’t control themselves. They don’t want to be “a statistic.” 

One in four women will be a victim of domestic abuse. That’s a lot of people. 85% of domestic abuse victims are women. Domestic abuse is the leading cause of injury to women in America. More women are injured by someone they love than are injured in car wrecks, falls, stranger rape, bike wrecks, kitchen accidents… More often than anything else, women are injured by a loved one. 

Those are the “statistics”.

My mom grew up in a home that had domestic abuse. I don’t know how severe it was. I know my grand parents split up when my mom was young. I know that she didn’t tell us about it for a long time. I know that my mom was smart to pick a man who could hold his temper in a fight because she couldn’t. It could have been a perpetuation of the cycle if she hadn’t picked my dad. 

I had a friend named Amber. She was lovely, funny, smart, pretty, fun to be around, a good cook. She was dating another friend named Brett. In fact, Brett was my friend first, I met his girlfriend later. They lived together. They had for a long time. I want to say 6 years. They were young, they both worked and made good money. They seemed happy. Brett was a funny, likable  fun guy. Brett also had a bad drinking problem and sometimes did drugs that made him more aggressive. He was already pretty aggressive to begin with. 

I had witnessed Brett being controlling of her a couple times. One Sunday afternoon a group of friends was sitting around watching football or movies or something. Brett showed up without Amber. He was mad, really mad. He was complaining about how she never folded the clothes after she washed them. She put them in the basket and left them there for several days and then his clothes were wrinkled. She started calling him on and off. He would yell at her over the phone and tell her when she could do things the right way he would come home. That was the worst I ever saw. And I confronted him about it. And I asked her about it. She of course said she was fine – he just got mad sometimes. 

One night in the middle of the night Amber called me. She wanted to say goodbye because she was moving back to her parent’s house in another state. She was at a hotel which she wouldn’t tell me the name of. That weekend had been Brett’s birthday. He had been drinking heavily and doing drugs for several days. They had a nice birthday party, but when they got home, he had exploded. She didn’t know why he was mad, just that he scared her to the point that she had to leave. He hit her a few times (not the first time by a long shot apparently) and then he locked her in the bathroom. She thought she was going to die. She thought he was going to get his gun or a knife or something and would come back to kill her. He didn’t. He left the apartment and she waited a few hours then broke down the bathroom door to get out. (He had installed the handles backward so he could lock her in there.) She left the house with just her purse and her car. She didn’t stop to get clothing or jewelry or anything. She ran. She called her parents, they put her in a hotel and started driving our way to get her. She dumped her car somewhere and took a taxi to the hotel. Her and her dad took a police officer to the apartment the next day to get just the most important things and then left the state without looking back.

I think about Amber a lot. I think about why I didn’t realize she needed help. Honestly, there weren’t a lot of signs – she didn’t have bruises or marks. She didn’t flinch when he leaned in to kiss her. She was outgoing and funny and laughing and fun. When I asked her about the few things I did see, she swore she didn’t need help. Did I miss the signs? Did I misunderstand what was happening? Could I have done more, sooner? Why didn’t she call me that night? I would have helped her. 

I never heard from Amber again. I did see Brett a few times. By that time our friends had heard about what had happened. Many of them didn’t want to associate with him anymore. His best friend, a gentle giant of a man who “lifted car engines for a living,” took him aside when he saw him again. “Explained to him” his views on hitting women. “Told him” how he felt about him hurting Amber, who this friend had loved dearly. 

I have had several other friends that told me of their abuse – sometimes years later, sometimes months. I had a college friend who I hadn’t talked to in a while call me and tell me of a particularly scary incident. Luckily all of my friends have lived through it, but not all victims of domestic abuse do.

I want to help the Ambers out there. I’d like to help them before they get to the point that they can’t be helped anymore. I’d like to help them before they loose themselves and can’t find their way back. I’d like to help them before they HAVE to run. I’d like to help prevent more Ambers. 

One thing that needs to be fixed in our country is the dialogue we have about abuse. If you read my blog with any regularity you will see that I talk a lot about changing dialogue. In my opinion nothing can change until we change the way we perceive things. Changing the dialogue which we as individuals use can help those around us see things in a different way. By changing the words we use to talk about any certain thing we can change the perceptions of others, open windows and doors to people’s consciousness. 

What needs to change in our dialogue? 

Let’s begin with victim blaming. Victim blaming in any situation is dangerous. In the cases of rape and domestic violence it is deadly. Women don’t want to come forward and ask for help because they are ashamed. They are ashamed “they didn’t leave”, they are ashamed “they weren’t strong enough to stop him”, they are ashamed “their children were witnesses, or worse were abused as well”, they are ashamed that they love a man that hurts them. It is truly an endless list. What makes them ashamed? The fact that we as a society blame the victims for “some part” of the abuse. The fact that the authorities often either believe both parties are to blame or sweep it under the rug as a simple dispute. The fact that we as a society look at these women as not only “broken”, but also as “broken so thoroughly that they can’t be fixed.” We have to change the conversations we have. We should not ask why she stayed, what she did, or how she could let this happen. We should instead use words that turn the focus onto helping the victims. “How can I help?” “Who can we call?” “What do you need?” 

Talking about the abusers as if they are dirty rotten scum. I know, that is my first instinct too. I let a string of cuss words a mile long go when I found out my friend was beating his girlfriend. I called him very very dirty things. The problem is, this doesn’t help either. It doesn’t encourage abusers to find help. It doesn’t encourage abusers to walk away. It doesn’t encourage people to seek counseling or give them hope that they can change. Abusers are often themselves products of abuse. It is a complicated thing – the reasons people abuse other people. It is a whole mess of psychological issues, past issues in their culture/home life/friendships/relationships/ etc. Honestly, no abuser is like another and we shouldn’t just write them off as permanently broken either. I believe that some abusers can change – they can get help and learn to deal with their feelings in a more appropriate manner. If we aim hatred and vitriol at them, how does that encourage them want to ask for help? 

We need to stop providing excuses. Charlie Sheen called it a “big misunderstanding”, Chris Brown is still playing concerts and clubs and in movies, Mel Gibson – despite very terrifying recordings of his threats – is still just as welcomed in Hollywood society as ever.  Why is this? Why do we allow public figures to “get a pass” on abuse? This needs to stop. Abuse is not a misunderstanding, or a mistake, or an accident, or a one time thing. Abuse will not stop until we start to say “abuse is never ok. No matter who you are, where you are from, how much money or influence you have. Abuse is NEVER EVER EVER ok.” 

We need to have more open discussions about abuse. There are a number of organizations out there that are trying to bring this topic more towards the front of society. To talk more openly about abuse. There are walks and runs and pamphlets and school assemblies and college groups. There are a lot of ways to help if you look. The best way to help is to be vocal. Say “Domestic violence happens. Until we start to TALK about it, we can’t change it.” Discuss it with friends and family and neighbors. 

Have serious heart felt talks with your sons and daughters. Talk to them about what domestic violence is and what we can do to help our loved ones who find themselves in this situation. Talk to them about finding help right away for any victims they know. Teen partner abuse is at an all time high right now. We need to be talking to our children about this way before they start dating. I know, I hate HATE to have to tell my son that there are terrible things in this world. I hate to tell him that there is racism, sexism, war, violence, rape, domestic abuse, human trafficking  I hate it all. I wish WISH we lived in a world where he didn’t have to witness these things. But we don’t. And he needs to know. 

Last, but not least, if you read my rape post you already know I am going to say this. Talk to your sons. Talk to your nephews. Talk to the young men in your life. Talk to them about not hurting others. Ever. For any reason. Tell them what abuse is – in all it’s forms – and that it is never ever ever ok. Talk to them about not hitting people. Not just women. Not hitting anyone. Talk to them about how the need to control becomes the need to hurt because controlling another person? That never works. Talk to them about the feelings they have. Help them to find good healthy outlets for stress, for control issues, for low self esteem problems. Help them at a young age to know it’s ok to ask for help if you don’t know how to handle your emotions and all that STUFF that is happening inside you. Teach them how to find that help.

Here are a couple links to some good orgs that are trying to do a lot of good in this country. There are many many more out there. 

http://www.menstoppingviolence.org/

http://www.walkamileinhershoes.org/

http://www.thehotline.org/

http://www.helpguide.org/mental/domestic_violence_abuse_help_treatment_prevention.htm