TRUE FEELINGS

Life is weird. Even weirder when one is sick. Things go through my mind as I am still human. What I do think is weird is how my own feelings go through my mind. Fears and even a little depression every now and then. What fears I do have is being alone when my time is up to meet my maker. I feel this way as I think mainly as I have been single for so long and now feel that being sick with my disease I will never meet my soul mate. With the oxygen and dealing with the weight issue I feel that people will just look at me as an out cast. Yes, I do have a couple of good friends and I am close with my brother's and my mother. It's not the same as wanting that special person in your life. Yes, I do fear that I will be alone in that aspect, but am not sure if it is due to the sarcoid or just having the problem that I have been dealing with all my life which is the weight. I have always felt good helping others which I am always happy to do. I enjoy helping, being the shoulder for someone to lean on when needed, but there comes a time when I do get lonely and say "Is there anyone there for me who will accept me for me?" This is something that I go through every now and then and know it will pass. Yet I am sure there is that special someone who will look at me for who I am. Even with the cannula in the nose and the added pounds, that too is even hard to rid of as I am doing so now. I am human, I have real feelings, and I get through the bad times I have. And some issues that I even have to confront and get out in the open. Just trying to find the right way to get the feelings out is not that easy sometimes for me. Yes it is time to tell you about me and thanks for listening. Mike G.

WHATCHULOOKITAT

Most people look at my when I am doing my walking at a local mall as I use a walker and of course I have my oxygen. I use a walker when I do any kind of long walks so I can stop and take a break as I do get winded. The walker I have is one that has the four wheels and a seat on it. I get looked at mainly as a 43 year old person using a walker and on oxygen, they don't know whats wrong. But take away the oxygen and the walker and say i go for a short walk from the car to the convience store. People would have no idea that i am sick. Sarcoidosis is this type of disease. It hits people differently. As it starts usually in the organs, and it also can hit the joints. Yes when I do get asked whats wrong I get looked at like I have ten heads. I have bad days when it comes to walking as it is difficult to walk the length of a city bus (which is about 40 feet) before I get winded.  I do have good days too, what does it feel like to walk in such a short distance and lose your breath.
The best way to describe it is hold you breath and walk the length of a BAT bus or a T bus then let out your breath. Or those that run for a minute you huff and puff to catch your breath. It usually takes a couple of minutes for me but I do get my breath. Yes even on the oxygen, I still lose my breath. At times my knees will bother as well, due to the oxygen I am considered legally disabled and I do play it smart when I go out. I usually have a back up or two. I have three portable tanks that I carry and as a rule one stays in the car as a back up. There are other people who have the disease and are fine without treatment and some use steroids for a period of time. I keep on moving as I do not consider sick or disabled as there are other people that are worse off than me. Take away my oxygen and my walker and no one would know that I am sick or how bad off I really am. Will there be a cure for Sarcoidosis, I hope so.
I still do wonder how many with this disease called Sarcoidosis ( or to those who have it  sarcoid) are here in this state. I know there is a person In the New Bedford or Fall River area. Please feel free to let me know or if you have any questions about this disease I will answer them. As the old saying goes " It never hurts to ask." Until next time my best to all. Mike G. If you have Sarcodosis or have a question for Mike G. Please send it to  BrocktonBeat@hotmail.com and put attention Mike in the subject.

YOU HAVE WHAT? SARCOIDOSIS DESCRIBED

As promised I have a quick description of this rare disease that one out of 100,000 people have. Sarcoidosis is rare and hard to diagnose. Chest x-rays, CT scans, bronchoschopies and lung biopsies are ways to get an accurate diagnosis of the disease. How can you tell if you have it before all this. Like everything else when we get sick, symptoms are usually present.These symptoms of Sarcoidosis can be but not limited to, shortness of breath, dry cough, abnormal breathing sounds, ill feeling, weight loss and fatigue to name a few.
Sarcoidosis can also affect the skin usually with rashes, also it can affect the eyes as well. Sarcoidosis usually affects the organs mainly in the lungs which is where most people get it.Tissues from other organs will gather into granules and fill the lung which will eventually disturb the breathing. The immune system also gets affected as the disease hits the white blood cells. The lymph nodes grow in the lungs and the liver and spleen can become enlarged. About 30- 50% of the people who get this disease will not need treatment. Those that need treatment such as myself go on steroids, Prednisone is the usual.
I was on 60 mg for almost two years and had put on 60 pounds. I have always had a weight problem even as a kid so the extra was not good. Yes this all sounds bad for those that get the worst of it but it can get even worse. Complications do happen, pulmonary fibrosis, pulmonary hypertension, cardiac arrhythmia, kidney stones and organ failure can happen. Yes I have a couple of these complications. Pulmonary hypertension and a collapsed right lung.
Who can get this disease? Well it is more common in African Americans than Caucasians, more in women than men. The cause is unknown but some thought of environmental or genetics may come to play. I have my own feeling, as two famous people have it. One has passed and one is still alive. The person who is alive his daughter has it, and before one of my cousins passed away he was just diagnoses with Sarcoidosis. So I think you can guess where my feeling is on where the disease is. My next question how many people have this disease in not only Massachusetts but in New England. Wondering where else you can learn about Sarcoidosis, it can be Googled. That's where I had gotten my information from and there are three hospitals here in the Boston area that treat it. Mike G.

IN THE BEGINNING-WHO KNEW

" It is said that if you want to know how a person lives walk in their shoes". I never understood this quote until my father was hit with emphysema severely. He would use oxygen on an as needed basis. In his final months alive and his medical condition slowly getting worse our family doctor wanted him to walk our hallway of the apartment building we lived in. I would get so mad when after two strolls in the hall he would have to go and sit and use some oxygen.
There were times he could walk the hall about five times. He passed away in 2003 and in 2004 I had transferred to Tampa, FL with the hotel company I worked for. I was at that hotel for a year before I transferred to another company owned hotel resort not to far from where I started. This was in 2005 and in late winter of 2006. I had gotten my usual bronchial colds and that lasted into the Beginning of 2007. When I saw the doctor he checked me out and had diagnosed me with asthma.
 Yes, I was wheezing and my breathing was labored but not that bad and he gave me medications for an inhaler and singular. I returned to the doctors due to the fact that I was not breathing any better and this was after four months. He had given me the low dose of Adair.This had continued throughout 2007 with the Adair dosage ending at the highest possible 500/50. Still having my fathers death on my mind and my breathing starting to get screwed up at the age of 40, I was a little worried. In January of 2008, I woke up and was having a hard time breathing, the inhaler nor the nebulizers were not helping  my breathing.
 I made my first trip to the hospital and was told I had pneumonia. In February after two visits with my pulmonologist again back in the hospital for no air flow in my right lung, I was discharged 5 days later. My trips to the hospital were frequent, every three months. Finally in August of 2008 I had a biopsy done on my right lung, then to the infectious disease doctor for the diagnosis of Sarcoidosis. He had told me the only treatment for this is prednisone(steroids) I was on 60mg for close to two years. The last three times in the hospital system in the Tampa Florida area was in November(the week of the elections) then the first week of December,discharged on December 9 and readmitted on the 19th.

My mother has always worried to much for me in my eyes. I have felt after 18 she doesn't have to worry about me.I had told her that in my thirties and still tell her, But the last time in the hospital I was there over Christmas and was glad to see my mother and a family friend walk into my hospital room. When I got out of the hospital I had gone to my job and put in for a leave of absence(family medical) In January of 2009 my mother and family friend moved me back to the Boston area for better medical treatment. I had an appointment with my family doctor and he set me up with a pulmonologist.

 I told him what was going on and He had also set me up with a sleep study. I should not be alive to tell you this. In one hour I had stopped breathing 97 times and my oxygen level dropped to 47%. Normal oxygen numbers should be around 97%. I have been in the hospital a few times in 2009 and finally met a pulmonologist at Mass General Hospital. He at the time was in charge of the department and he has since retired for his own medical needs. Yes, I have a new pulmonologist and I am  familiar with her. She is more clinical and does more of the plumbing of the lungs. She knows about Sarcoidosis and she also knows the amount of oxygen I uses during the day and that it increases at night. I am now 43 and understand the quote I stated in the beginning of this article. I miss my father as now I know how he felt. I have never even smoked and now I am on 2 liters of oxygen during the day and my right lung is collapsed.

What is Sarcoidosis? Stay tuned and you will begin your journey with me.     Mike Guerriero

HOW RARE WOULD YOU LIKE IT

     I only get that question asked when I am ordering meat.  My friend. Mike in some sorts is asked that question everday. Mike and I have known each other for over 35 years and reconnected again thru Facebook last year. Last time I saw Mike he was 18 in 1985 and I want to say I was only 8 but that would be lying and that's something  I am not really good at doing.(JUST WHITE ONES) So I met him again and he was on oxygen and immediately I thought smoking and he said no smoking.
     He started to tell me of a rare disorder called  Sarcoidosis  and how it effects him. He is an inspiration to me and everyone who meets him. He is South Shore born and raised and has come out many times to  Brockton to be the best Humanitarin he can and to inspire others who think they may have it tough at times(ME)
    I truly support and encourage him to write, blog, take pictures and videos. We welcome Mike aboard and look forward to him writing his daily challenges as he lives with a rare disease. Welcome aboard Mike G.