A journal of healing

Archive for the ‘surgery’ Category

Everyday hero

Cubid

There are few instances of people nowadays that are in my life that I would say are heroes or at least the bravest people I know. But I have been blessed to have someone in my life right now who I would call a hero. She works with me and at first; we did not hit it off. But as time has gone on, we have become work friends.

This woman does not see herself as anything but just getting along in life. Many years ago, when her three boys were little, her husband made a left turn into an intersection on his motorcycle. He died because someone did not see him. She rarely talks about it. I did not find out the whole story until recently when she was telling me it would have been her 40th wedding anniversary. She never remarried. She dated rarely and only after her boys were grown and on their own.

She is our recruiter for professional staff. I was not hired by her. She was out having surgery on her leg. A few years back she had been trying to open her garage door manually when the power was out and the rope gave way and sent her flying. She shattered her leg and hip. She was out having the pins redone as they had worked loose and were hurting her. When she came back, she was a bit cold to me. I did not realize that she feels possessive over her hires like a mother but I was not part of her flock. It took a while to break down the wall.

I found out that she also has ovarian cancer. I took great effort to make time every day to see how she was doing. As we got to know each other, she would inquire about my health. Turns out one of her sons has rheumatoid arthritis as did her husband. She was very concerned about the drugs I was on and the reactions I was having. She listened authentically to my concerns. She would always say, “Well, hang in there.”

I am not sure what or when, but we became pretty close. She would come to me when work was getting to her. Not much really got to her, but the pettiness of work really did. She does not like everyone in the HR department and shares her feelings about the inequities she sees. She has been doing her job for many years and is very good at what she does.

But then she would tell me of her journey with her cancer. She bravely faced infusions of chemo last year every four and then two weeks. It was killing her. She never wavered though and other than sharing with me and two other girls who were cancer survivors, she kept it to herself. Her doctor wanted her out of work but she persevered and kept working. There were days when she would walk all the way downstairs, back and forth with candidates who she was interviewing. She told me her bones hurt her so bad from the chemo that the first thing she did when she got home was take an oxycodone. She lives alone with her dog Jethro who she cherishes.

Every day she could make it in, she was as pleasant and helpful to new people as she always is. To look at her, you would never know the severe pain and misery she was going through. She would always ask how I was and I stopped complaining about anything. What I face is nothing in comparison to her journey.

About a month ago, they stopped the chemo. Her doctor told her it is going to kill her faster than the cancer. They also discover new cancer cells in her chest. The doctor feels he can surgically remove what they see. From then, they will start a new program with her of less aggressive chemo. She goes under the knife next week. We took her out for lunch this Friday as a treat and to bolster her. I think it was more for us.

There are very few people I know who are as brave as she is. She always is concerned for others. She asks little of her family and of us. But we all are there for her. So if you read this, I am asking that you take a moment and send my friend some healing energy. And then be grateful for your wellbeing.

Advertisements

The Wind beneath my ……

open roses

I am connected to a couple of organizations for Psoriasis and Psoriatic Arthritis. I was going through my emails tonight and there was a post that got my dander up…. And if you know anyone with Psoriasis, that is not a pleasant thing. They do not need help getting their dander up.

The article was talking about how there is a connection to the microbiome in our bodies and Psoriatic Arthritis (PsA). What this means is there is good bacterial in and on our bodies that do many things. When your system is sick, and you have a bacterial infection, you have too many of the bad ones. Other symptoms caused by bacteria out of whack are athlete’s feet and yeast infections, the plague of being a woman. Cellulitis is also a common and very prolific bacterial infection.

When people are often diagnosed for skin rashes, they think they are bacterial. Psoriasis is NOT bacterial. It is a reaction to the immune system being out of order and the skin over produces cells which build up plaques. That is what the rash is. I did not present “normally” with plaque but with little raised circular dotted configurations. It was several years before they figured out what my weird head to toe rash was.  (I was diagnosed with the PsA and they then connected the dots…so to speak.) They thought hives, and I was pretty sure that was it too. I have had hives off and on for my whole life. I was put on antibiotics. Guess what…that was the worst thing they could have done.

My immune system went absolutely haywire. I went through a series of strange symptoms that would show up in labs.  I would rush around being given all kinds of tests; all to find an anomaly, but then nothing would be done. I was tested for parathyroid issues, Hasimoto’s thyroid disease, saw all sort of endocrine doctors, saw nephrologists when my one kidney crashed, I became diabetic with an A1C of 13 from my normal 5. But no one could figure this skin thing. I would itch so much at night I would bleed. My sheets looked like I was attacked by a knife.

Finally, they tested for the RA markers and did a SED test. It was definite for PsA. Finally, (slap your head) the rash was figured out to be psoriasis. By that time, I had some hefty plaque on my scalp which confirmed it.

I have always had gut issues. I will try to not be too graphic. In my family, farting was an art. I was a Picasso. (Ok, I have to stop laughing at this) But in seriousness, this “ability” was not something I thought about much. I also have a loud gut. My bowel sounds do not need a stethoscope to be heard. Matter of fact, my dear friend wants to record them and make a record out of it. As I got older, my digestion became pretty erratic. I think it is one cause of my weight issues. Most often what comes in, goes out the same; no digestion. So…(in honor of the good Doc), I no longer practice my “art” for fear of a big oops, especially in public.

This article I was reading tonight shed light on something. The article talked about the gut having missing bacteria could be a factor in people having PsA. http://www.psoriasis.org/advance/features/microbiome-how-your-bacteria-affects-psoriasis-psoriatic-arthritis

I wanted to scream. NO SHIT!  Totally inappropriate, but truthful. I think about how my gut situation has steadily gotten worse over the years. Most times, I have to eat and have access to a facility pretty pronto. I have has some serious miscalculations (yes Doc, you are not alone) I will have a series of days like that and then just the opposite. Being blocked up is more painful I think. But I am 97% of the time in some form of discomfort all the time.

I was diagnosed with diverticulitis and was hospitalized for it five years ago. The course of meds included IV-antibiotics. My reaction was so bad, that they thought I had C-diff. It came back negative. But I was allergic to the Cipro and presented with real hives head to toe. I was also hospitalized with pancreatitis, hospitalized….given pain meds that locked me up tighter than Fort Knox. We had to blast. That was caused by an infected…. INFECTED gallbladder, which was removed and more drugs were given. Anyone catching on here????

So this article goes on about the investigation to the link of inflammation and the bacterial count in our system. It talks about probiotics.  On my GP’s recommendation, I went on probiotics. ONCE! My reaction was the worst case of almost not making it to the potty ever. Talk about a bowel cleansing. Yikes! I was sick as a dog for several days. I obviously stopped them. However, for the past two years, I have suffered from chronic issues that have ramped up to be like having Crohn’s. Last year, the Enbrel I had been on for eight years stopped working. My immune system had become “numb” to its affects. The result is my PsA is in full bloom and my gut is also blossoming and it ain’t pretty. I have days when the pain is so great and the reaction to food is so violent that it is amazing there is a bathroom left. You would think I would lose weight. But no; just the opposite. I put on thirteen pounds since last May. Fortunately, I have now lost 18 being on Weight Watchers. But it is extremely hard. For one thing, my ability to eat raw veggies is absolutely gone. I cannot tolerate carrots at all. Too many luncheons of salad and I am in extreme pain. I love veggies and I do not eat meat. But I cannot eat a lot of other things now. I also feel just terrible, tired, and irritable and gassy…. And not in that order.

But in the article at the end, it explains that the OTC, or everyday currently available probiotics are not the answer to the solving the connection with PsA. I will gladly volunteer to trial a product. The article leaves the possible cure for this terrible disease just hanging. It infuriates me. If they would spend one day with me in a small, warm room with no breeze…..that cure would be on the market pronto.

What if we had a Fattie Ghetto?

I read something earlier today in the paper which has stuck in my craw all day, festering and making me more and more angry. This was an editorial in the A section. I believe in the right to speak your mind. But when something gets published in the local paper, you better have your facts. This woman clearly did not and was out to make her stand no matter what. I got to tell you, if she was in front of me, I would have hit her. (Not really, I do not hit people) but she would have made the running for the first.

Seems she is proposing legislation to sanction overweight people. She wanted to propose a bill or mandate that people who were morbidity obese HAVE to do something about it. I am sure she is proposing surgery. Maybe she would like people to sew their mouths shut, which is pretty close to having your stomach stitched off. She said anyone who is obese would be sanctioned as well, but she did not reiterate how. She had no statistics, but spouted off like she was an authority on the cost of medical expenses incurred by fatties. (my word…because I am really getting cranked up now) She then went on to liken this legislation to be imposed and regulated the same way that cigarette smokers were sanctioned.

Here is how I see her thinking this would work: Every time a fat person wanted to buy food, they would have to step on a scale. And according to whatever weight they were, they would pay a higher percentage for their purchase. Chicken taco for a skinny mini: $3.59. For a fattie, 35.49. with taxes. Seems fair right? I mean, why should we pay for the extra health cost because this person wants to eat? Right? I mean after all, they are so fat they don’t need to eat.

GRRRRRRR….this is akin to a Nazi state. All the fatties will have to reside in a fat ghetto where they only get water and low fat Weight Watcher’s bread.

When my husband and I first met, I weighed less. We were so poor. We were going to college, working two shit jobs each and trying to keep the mortgage. That was my primary bill. That and the ten year old cars we had. When I went grocery shopping, I spent what I could. We were also feeding his 14 year old daughter who could pack it away. What do you think I bought? I bought the cheapest thing that went the farthest; pasta and sauce with cheap meat. We ate it all the time. I have discovered now for me it is the worse trigger food I have. That and white breads, which was another staple. The result of course was we put on weight.

We went shopping this weekend as I wrote earlier. We filled ¾ of the shopping cart with fruits and vegetables. The rest was a 6 pound only white meat turkey breast for $18.00, low fat ground chicken, and low fat other products like broth and some low fat cheese. No crap at all in the cart. Our bill for two people was over $200.00. We can afford that now, but that was more than I spent in a month back in the day.

When I was teaching in an urban college, I remember the mothers telling me how much they hated shopping for food for the kids. It was cheaper to get a happy meal and be done with it than shop for good healthy products. And on top of that, they were going to school and working jobs. When were they supposed to fix these fancy healthy meals?

To that point, I spent the whole weekend cooking. I made Weigh Watcher’s 1 point vegetable soup. I made buckets of the stuff. I made the turkey breast. We had haddock on Friday. $13.99 a pound. One piece of fish spilt between the two of us was almost $15.00. We bought what fruit was available. All of it was ridiculously priced because it has to be shipped in. I just cut it up to have it finger ready. I made low fat burgers for dinner on Sat and the rest will be for the week. The ground chicken was $4.49 for the package. The package is only 12 ounces, so it cost more than $5.00 a pound. Tricky aren’t they? My weekend off was spent on this effort to eat healthy. In between was spent doing wash and cleaning. Such fun!

My point is this. Here I am working so hard at this healthy life style. This B* tch has the balls to throw out there that all fat people should be penalized for being fat because the impact on the cost of medical issues. I am not going to deny that there is a high prevalence of more disease with obesity. However, not all fat people sit on their ass all day watching TV and stuffing their faces with beer and tacos. Some do. I know this. But not all.

When we were driving around this weekend, I was paying special attention to what food joints we passed. I was shocked and thought no wonder this is an epidemic. Every corner had a fast food joint from burgers to fried chicken. There were tons of pizza palaces and taco stands. There were ice cream and yogurt shops, donuts and on one street, two bake shops and a chocolate store. I did not see one salad joint although I know they exist.

And as far as medical costs: here is something to think about. I worked in the system so I know of what I speak. All people diagnosed with mental retardation or developed disabled have the opportunity to have the State and Federal government pay for everything for them from their diagnosis at infancy to death. They can get housing, food, medical treatment and in some cases full ride to school. Most do not get a degree, but the State believes they have the right to a higher education. And they cost the school systems huge dollars because they need so many services and support. And part of their genetic makeup makes them very susceptible to illness. It was rare to have someone who was MRDD live past 30. We used to institutionalize them to keep society safe. We warehoused them in droves. Then Geraldo Rivera went to Willowbrook in 1987 (not that long ago) and the rest is history. My point is that this is a population that cost taxpayers millions and millions. Lots of dollars have been spent to understand their genetic makeup in order to help them have a better life. 28 years ago people who were MRDD were cast out and ridiculed for a genetic hiccup. Maybe we should have taxed the parents for having mentally challenged children and putting a burden on society. What do you think? (By the way, if you agree with this, stop reading, I cannot help you and you should be ashamed)

See, I am sure people do not see the connection. For some reason we cannot move past that not all overweight people have a terrible lifestyle. People cannot and for some reason will not accept that because their bodies fight them constantly either with metabolism and/or some form of mobility issue some people are prone to putting on weight. I believe there is a genetic connection. If it was all up to what goes in the mouth or how much movement people do, than why are not all people fat? Some people can eat a house of food and not gain weight. Add to this fact that everything slows down as we age including our ability to process sugar. That’s why everyone is getting diabetes for their 50th birthday. Want to guess the cost of diabetic medical costs? Maybe we should put them in the fat ghetto too as they probably overweight anyways or so they say. I hope my skinny super hyper active friend who was diagnosed at 55 with diabetes reads this. She will love it!

And we have such limited choices if you want to purchase prepared foods that are healthy. Much easier to pop a big Mac and call it good. If you scrape the secret sauce off, it will save you 400 calories….. I am joking. I have not eaten McDonald in 30 years.

I cannot and will not stop fighting for this awareness until I fall on my face and suffocate myself in my largeness. That last part, by the way….was sarcasm.

Not giving up

This blog post took me several times to start it. There has been a lot going on in my head. I have not shared all of it, but I think it is time. I am scared shitless of dying. Every day I wake up and wonder if this is the day. This started about two years ago when I was beginning to face turning 59. My Mom died at that age. She got sick when she was 58 and within six months, she was gone. She had lung cancer. So as I approached that age, it started nagging at me. Then I turned 59 and woke up still alive. Then I was facing 60. And that was horrible. I do not know why, but this has been an awful time for me.

I stopped a lot of the introspective work I was doing because it was actually making things worse. Ever twinge, every muscle cramp signaled to me that my body was failing. I have NEVER been connected to my body. And the result is why I am so overweight. I never felt fat until recently. And the realization of my body mass coupled with my progress towards old age has plummeted me into an abyss. I admit it. I have been more depressed than ever…. And truthfully, I hate being depressed.

So what is feeding this? Well, on top of my Mom’s early demise, my father died at 71. That is only 10 years more for me. I also have a weird habit. On Sundays, I look at the obits. I think it is my duty to read the last thing people have said about them. It may only be their only tribute too. You never read “John Smith was an a-hole who beat his wife.” I started the habit in my 20’s. When I got divorced, it upset me so much that I would die and not be the loving wife of someone. Sad, I know…but I am confessing here. Now I read the obits and often I am older than the deceased.

I get very upset when we visit Joe’s parents. They do nothing but watch TV and fight. He is 94 and she is 90 and has dementia. It is terrible to see such vibrant souls trapped in their own hell. This is what the future is? I see all the geriatric patients housed in our affiliate nursing facilities and think: What -ho….what a grand life….NOT! I have taken Hospice training and although I think Hospice is wonderful, it has added to my unnerving.

I decided that maybe taking a look at losing weight might add to my longevity. I struggle so much with this because I LOVE food. I love to cook and love baking even more. I also confess that this last year I ate like crap and I gained weight. I knew better. But nothing is going to change unless I take the reins. So what did I do? I met up with that jerk of a counselor who wanted me to get bariatric surgery without even talking to me. She added to my angst so much. I wrote about it but I do not think I went into the level of how much she really upset me. This weekend, I pursued another avenue. I signed up for the program called NYFatLoss.com. The website again sounded fabulous. They balance your hormones, your body makeup and balance your intake and so forth. Sounded perfect, but the website was extremely vague with any details such as cost. My BBF sent me a link to a user’s blog and what an eye opener. The cost was over a thousand dollars to several thousands. It is a 500 calorie diet for forty days. And when that is up, you ante up again. The promise is 35 pounds in 40 days. Of course, if you are eating 500 calories, you are on the Auschwitz diet and you WILL lose. I told my husband you get a choice of two veggies, two fruits and two servings of meat. He thought it was for one meal. That’s it for the day and only certain fruits and meat. You will lose, but when you go back to eating normal you will be right back again and probably worse off because your set point will be so screwed up. You have to pound several vitamins and their supplements which include products that raise your blood pressure and will thin your blood. Not a good combination for someone on Coumadin for a hereditary complication. Again, I hit the wall.

Today in my class I teach, I had two students who both have had bariatric surgery. One was heavy and the other one was thin. They both were eating fast food. They shared that they both have gained weight back. One of them confessed she gained all her weight back and then some. Both said they had complications including being very sick. The thinner girl said she still gets sick. As I walked past her and eyeballed her mayonnaise covered sub with the bag of nachos and sweet tea. I said, “I would get sick too.” I served her a heaping helping of shame with her lunch. I felt terrible and I did not get a chance to apologize. I spoke the truth. I do not eat fast food hardly ever because it does make me sick. Some things that are prepared commercially really get me. McDonald is death and I have not eaten it since 1986. I do not eat red meat either since 1986….well the list is quite long of what I do not eat.

I am so sick of all this. The depression, the frustration, the anger and mostly the additional self-loathing I seem to be heaping on myself. I secretly started planning this weekend to make some changes. I spent much of my time cooking. And I am cooking things for my health. If I have the right things in the house, I will eat them. I eat “bad” things when I am bored. After my disappointment with NYFATLOSS, (what a hose job) I had a choice. I could give up and just continue being this way, or do something. If you know me, option one is not a choice.

So I joined Weight Watchers. All I am going to say about it for now. I am doing this for me because no one else’s opinion matters. If I am successful and take off some weight, wonderful. I am determined. If I don’t, I will start again. I had to get up a walk away from my computer after I typed this. This has been an dreadful or dread-filled time for me and I am worn down to a nub of humiliation covered in fear.

I am stopping for tonight. I have a lot more to share on this topic. Not about swapping recipes for losing weight, but on the humiliation, shame and condemnation people cast on others. I know I have mounted a beaten old nag of a white horse. But I think this is important because body image issues are not about just weight at all. But for now, I am tired.

Bariatric Surgery or BS

I had an interesting experience today and I feel right now, not very pleasant. I am going to share it and I will admit right up front, it is taking a lot balls for me to talk about this. I really want people to comment on what I am about to share. I think the opinions will vary and I am asking for honest feedback. I know I am opening myself to a lot of criticism.
So let me explain. I had a horrible day about three weeks ago. I was so upset and scared and I could not stop crying. Silly thing now, as I have no idea why. Just one of those phases I think. But I got on line and started poking around for support groups. I think at least that was what I was looking for. I love to spend hours on Google searching things out. I start with one thing and go off on a completely different direction. I used to sit and read my home version encyclopedia. I think it is why I am such a master of inane information…
I found this website for a therapist who specializes in people with PTSD, trauma issues, eating disorders, family counseling, anxiety and other problems. She offers help with life balance. I thought humdang! Digging in further into her site she talks about mindful eating and body acceptance. I was so thrilled I sent off an email asking for a session. And much as I think that cognitive based therapy can be dangerous with the wrong therapist, I was willing to try again.
I get there five minute before my appointment. I wait in the waiting area for about 2 minutes. I can hear her talking to someone. I thought, ok she is on the phone, so I knocked to signal I was there. She did not answer. I waited again five more minutes and knocked again. She said she would be right out. Ok. She was with someone so I had no problem. Then she gets me, I sit down and her phone went off. She answered it and left me and went to the waiting room to talk for another ten minutes. It is now a half hour into my appointment time of an hour.
She finally comes in and starts to fire off questions. Of course, she is taking a history which I had expected. Some of her questions were weird and some were pretty probing. But I answered honestly. I think it sort of shocked her. We swing around to talk about my weight issue. I am very uncomfortable talking to anyone about my weight, but hey, that was one of the reasons I was there. However, she went right into something I was not expecting.
She went on the charge of why I should have bariatric surgery. I felt myself flush and I had to hold my anger in. This is the second time a Doctor (she is a PhD doctor) has done this. She knows nothing about me except a brief ten minute interview. I started to explain that my medical issues with Factor V Leiden and Psoriatic Arthritis do not make me a candidate. Matter of fact my two GPs have said not it is not a good idea. She did not know what Factor V Leinden is. My bet is she does not understand that PsA is an autoimmune disease and not osteoarthritis.
She starts to tell me all sorts of things about how when you have the surgery your metabolic rate changes. It is different than dieting because you are not restricting food so that the body goes into shut down and hordes calories. I just shook my head. How is it not restricting calories. It most certainly is because you cannot eat a lot of food without getting violently sick. Talk about Pavlovian training. Eat too much and you will get sick. I did my homework on bariatric surgery along with having several friends who did it. They change the capacity of the stomach by constricting it with a band, stapling it or suturing it or totally by-passing it so food goes right in to the small intestine. Oh my good gracious. How does anyone not see this  to be mutilation of some form? I understand that it has helped many people to lose weight when they could not any other way and that is fine for them. But I told her, not for me. I did not come to her because I was desperate to lose weight. Matter of fact, I was more at peace with myself and my body before I went into all this self-evaluation and discovery. It was peace I was looking for and self-acceptance. I would still be troubled if I was a size 3.
She went on to say how she had the surgery and lost all this weight and so forth and so on. She said I will never lose weight, even forty pounds. I was totally turned off. I became a bit brittle and she felt it. When she asked me why I was pulling away, I said I was not interested in bariatric surgery in any manner. She said she would send me some literature. I said fine. We finished our session with a few other things. She set up another appointment, which I am not sure if I will do.
There is a ton of information out there on these barbaric…oops I mean bariatric processes. They all say the same thing. I understand how losing weight can be life-saving. But I also read about the mortality rate and the long term prognosis of it. There are malnutrition and vitamin deficiencies for sure. Hair loss, anemia, major poop and intestinal issues, blood clots, infections and other ramifications are all in the literature down at the bottom. All say the crappiest statement ever invented about how the cure/medicine comes with issues which the doctor or whomever deems worth the risk…. I paraphrased but it is on most medicines and other medical documentation. I want to change it to … “You feeling lucky?”
So again, in search of trying to better myself, I walked away feeling like a failure and disgrace. I am angry. OHHHHHH am I angry. Why is it we can do all this medical research on obesity and yet not find a cure other than mutilation of the digestive system? I read recently a medical journal article that there may be some connection in a T cell formation that maybe linked to obesity. That same rotten cell also has a lot to do with cancer and can you guess…Psoriatic Arthritis or autoimmune disease. Why can they not figure out that what you put into your mouth couple with the output of energy does not always equate with body mass. Yes, for some it is about what they consume. But if it were totally up to that, then everyone who eats McDonalds would be huge. But they aren’t. Only a select group of people consume food quantities which have an impact on their weight. Try explaining that to some doctors….they will laugh at you. If you are obese, you eat too much. Period! BULLSHIT. I am not going to go into a full rant on this right now.
Although I have a ton more to say on this topic, I am getting very upset. I need to go to bed and I am all cranked. If it were up to me, I would wave a magic wand and make everyone in the whole world obese so they can see that is only a body. We attach so much to image that it makes me crazy. Would we stitch a lung closed so smokers won’t crave cigarettes. Would we suture alcoholics mouths closed so they won’t drink? Would we give women with PMS a frontal lobotomy for depression…..which, by the way IS what they used to do to women and not too long ago. Think of that. I guarantee that someday in the future, they will look back at bariatric surgery as pathetically as primitive brain surgery. Hey, we finally figure out putting mercury in our teeth was pretty stupid.
Tell me what you think.