Monday, June 6, 2011

Hopeless

I try my hardest to remain positive in any situation. Lately I've really been struggling. I don't know how much a person is able to take. I'm not even just talking about myself. When I have hopeless feelings I try to write and usually I can get something positive out of it. Today is not really one of those days.

I'm not at all happy with the way my life is going,
I keep getting knocked down by the strong wind that's blowing,
It takes all of my strength to get up off the ground,
When I get to my feet I'm wobbly and fall back down,
I'm running out of the strength that's moving me along,
I smile and say I'm ok but everything is wrong,
I don't know the cause or the reason for all the pain I've felt,
I don't understand why this is the hand I was dealt,
What did I do or what did I say,
To deserve this life that I'm living every day,
I'm holding on to anything to stop the spinning,
This fight is too much for me and I'll never be winning,
I'm afraid I can't take it, it's too much to bear,
The sickness, the sadness, the pills and loss of hair,
I see people who are "old" and have had a long life,
They run circles around me and I'm supposed to be in my "prime",
Within a year my body has become my primary fear,
For most people that takes a lifetime but for me it took a year,
I'm afraid I won't make it because I'm not that strong,
The spark I've struggled to hang on to is totally gone,
I can't get it back and it makes me so sad,
It's impossible to be your happy self when things are so bad,
I'm grateful for friends,family and all the positive things,
Today it's just not enough to trump all my pain,
I shouldn't complain, for so many are worse than me,
They are just so much stronger that I ever could be,
My mind wants desperately to believe one day again I'll be me,
My body keeps telling me that's never going to be,
I don't want to give up and I continue to pray,
Lately I just never know if I'm strong enough to make it through today.

Friday, June 3, 2011

Dogs VS Docs

People with chronic illnesses are no strangers to disappointment. It can be something as small as being discouraged with your appearance, because of weight gain or even just a little bit of redness on your face that used to not be there. We are also face with much bigger disappointments. Things that people normally don't have to face. Losing a job, house, independence, or even an organ. I have personally faced many of the things I just listed, but the most disappointing thing, for me has been doctors.
I always placed doctors on a pedestal, in a way so maybe its kind of my own fault. Many children dream of becoming a doctor when they grow up, because they want to help sick people. The majority of the doctors that I have seen have lost that somewhere along the way. I have seen a total of 8 different doctors within the last 9 months and they still have yet to find out exactly what is wrong with me.
I am lucky in a way because, I have a great primary doctor and a great rheumatologist that are actually located in the town I live in. These two doctors are the kind that still have that genuine want to help their patients be healthy and live a better life. Dr. Stephanie Ott of Gwella Rheumatology and Dr. Laura Morgan of Buckeye family health are two of the exceptions to the horrible doctor rule. Most places if you call them because you are having a problem, they may ask you to schedule and appointment or call you in a prescription and then they forget about you and wait for you to call back and tell them it didn't work, or wait until you have a problem again. These two doctors will actually call me periodically to check up and see how I'm doing and if I need anything. To most people this may seem like a silly thing to be so impressed with, but to those of us who see our doctors, more times a year than most of our cousins, this is a huge thing.
Every other doctor that I've seen in town, have taken me on for a while to get money and then stepped away and said I don't know what to do to help you. I am not under any delusion every doctor knows how to fix every problem, so that is not what disappoints me. The thing that disappoints me is that they never really set out to help me in the first place and they could never give me another alternative of something or someone who could help. So, with the exception of my rheumatoligist and my primary, 4 doctors here in town just basically said, "Well, I did all the stuff that normally works and I don't know what to tell you." So when I would ask where I should go or what I should do they would literally say, "I don't know." Being so sick that you cannot function like a normal person, that is a devastating statement.
So when this happened that last time in town I decided to do some research. I am fortunate because the number 2 rated hospital in the US. (I'm not sure what the number 1 is lol) Is actually located in my state. So I took it upon myself to try to get in with them. It is true, in my opinion, that the Cleveland Clinic is one of the best hospitals in the country. They have much more knowledge and technology that is not available at other places. So then begun the monthly 3 hour trips to be seen. I was seeing a GI specialist, who I will not name, and a Pain Management doctor by the name of Beth Minzter.
The GI doctor has been my biggest appointment to date and here's why. I saw the GI doctor several times and he began doing some testing. It is so frustrating having to answer the same questions over and over, and tell them your number on the pain scale, but I will do whatever I can to get better. I have become extra sensitive to doctors and honestly, kind of downright discriminative. The doctor was asking the "routine" questions on my second appointment and he asked me, "Does this condition effect your every day activities or your quality of life?" I pretty much lost it. I'm pretty sure my head spun completely around and I puked projectile green slime because I was so annoyed with that question I just lost my cool. My response was, "Of course it does! I drove 3 hours to the doctor today, as well as the fact that I'm a totally non functional person!" I'm normally a very calm person, so this outburst is extremely rare for me. I thought my friend Ash's eyes were going to pop out. lol After he got over the shock his next statement to me was, " I can't imagine how frustrating and upsetting it must be to be in your situation. I can't guarantee that I can make you better tomorrow, or that I can make you better at all. What I can promise is that I will do EVERYTHING in my power to try to find out what's wrong and try to get it fixed. If I can't, I will make sure that I can get you to someone who will, and I will follow up, because we just need to get you better. This has gone on long enough." I instantly started crying tears of relief. FINALLY someone understand's how I feel and actually cares enough to truly try to help. I finally had found a doctor who I could trust. So I remained under his care and he started having me see the pain management department for testing.
My last appointment with this doctor was on May 19th. I went into the office after having a test done with pain management.The test I had done was supposed to be a breakthrough in finding out exactly what was causing all of my pain. So I had an appointment with pain management on the same date after the appointment with the GI doctor. So he came in and asked me some questions about how the test went and then began to look at the notes from the test. He looked at the notes without speaking for a long time and then turned to me and said,"Well I don't really know what to make of these test results right now, so I need to talk to Pain Management and see what their suggestions are. Since they administered the test they will be able to tell use which direction to go next." I instantly started to tear up because it was just like déjà vu. He was doing the same thing to me that all the other doctors had. He was done and didn't know what else to do, I just knew it. He noticed that I started to tear up and said," There's nothing to worry about, I just need to talk to them first and then I'll call you and let you know what's going on." So I felt reassured. He said he would call the pain management doctor as soon as possible so they could discuss a plan.
It took me about 20 minutes from the time I left there until the time I saw Dr. Minzter at the pain management clinic. Dr. Minzter came in and told me that she had just talked to the GI. I was relieved because that GI doctor had followed through on what he said he would do. Dr. Minzter is a very blunt and straight to the point women. I love that about her. She doesn't just tell you what you want to hear she tells it like it is and I LOVE that! So she comes in and looks at me and says, "I don't know why he didn't talk to you himself but he said he's done." I just started bawling. She decided to go ahead and try a different thing in that visit and kept apologizing for the GI. I was so betrayed by him and thought it was extremely unprofessional of him not to tell me himself.
Dr. Minzter has turned out to be one of the exceptions to the rule. She is caring and tells it straight, and I've never seen another doc have such a reaction to the pain scale. If you come in with a 7 and it goes down to a 4 or below her face lights up. You can really tell that she gets a great amount of pleasure in helping people.
I just wanted to share my story a little because it's so easy to become discouraged with the doctors that we have to see. You often feel as if the 5 in this story are all that are out there. I have been fortunate enough to find 3 that still have the initial childhood response of really wanting to be a doctor to help others. That's how it should be. I don't like the fact that my life is hard and some days I'm so sick I can barely lift my head, when I finally drag myself to the doctor all they see when I walk in is a big dollar sign in a hospital gown.