13 Years To Diagnosis
13 Years To Diagnosis63
By JerseyNana
Ha Ha The Hypochondriac Is Here
For years I was bothered by symptoms of chest harm, shortness of breath, hoarseness and palpitations. I had pneumonia several times and each time was treated with meds until my throat would close up and I was forced to discontinuance taking the medicine. A few weeks later, I would be sick again and return to the doctor to initiate the routine over again. Seems that I could never really get better. The fact that I was burning the candle at both ends never seemed to bother me. I worked two and sometimes three jobs to ensure that my hubby could support his business going and my children could attend college. It was around February of 1989 and my daughter was getting married in April and I had yet to even consider about getting a dress for her wedding. One of the main things that everyone busted my chops about was that I was having lapses of memory. Real or imagined, I became the butt of a lot of family jokes. Anytime an illness was mentioned; everyone would point to me……one thing held true to today, I never really looked sick so how could you take me seriously?
Sarcoid Lungs What Do All Those Words Mean?
Getting back to my daughter’s wedding and my need for a dress, I was out with my sister one Saturday afternoon because we both worked at the same part-time job at a weight loss meeting. She cornered me to stop at this exclusive dress shop and I reluctantly went in. The shop owner was a doll and she helped me find impartial the right dress. So I tried it on and staring back at me in the mirror were these disgusting purple blotches on my milky white legs. I told her that this was the reason I hesitated to try on a dress. I made an appointment with my dermatologist as soon as Monday arrived and got an appointment for the next day. He gave me some ointment and in about three days, it was completely gone. Luckily my dermatologist knew me because I had some “benign” lumps removed from my legs about a year before that were “nothing to exertion about”. I went to the dress shop the following Saturday and purchased the dress I had tried on the week before.
After my daughter’s wedding I was tweezing my eyebrows one afternoon when I discovered a bump right over my left eye from the middle of my eyebrow to the end of the browline. In about a month it was the size of an egg and making it difficult to completely open my eye. I went to my primary physician who sent me to a surgeon who had operated on me for a hernia and had also removed my gallbladder. I was no stranger to the operating room because a few years before I had a broken bone in my foot that required being in a cast for almost a year. The bone was supposed to heal in six weeks but did not and so I went for an operation which included my have bone obtained from my heel being grafted and held with screws. Fast forward six weeks, I am healed, now back to work. Oh no, did you say the screws have to come out now? Oh yes, and six more weeks on crutches and no putting any weight on that foot. Oh joy!
Getting back to the lump on my head, the surgeon did a nice job removing most of the lump. He told me it was a very hard and tough mass but he cut me along my browline and even though there is no hair there anymore, the scar does not sight bad at all. When I went back to the doctor for a follow-up, he told me the pathology came back and the lump was “nothing to worry about”. As I was leaving his office I was talking to his secretary and we chatted about my lump and I told her the good news. Then I remembered seeing a doctor on television say that we should keep all copies of blood tests and other records for our fill good. So she gave me a copy of the pathology report. I left his office and headed to my foot doctor. He was young and reminded me so much of my fill son. He inquired as to how I made out with the lump removal. I told him it was another “nothing to distress about” lump but I had a copy of the pathology report if he wanted to recognize it. He read the report and folded it and gave it back to me and continued to work on my foot. He then asked me if they were doing further testing. I said no because it was “nothing to worry about” fair like all the other lumps I had removed from my body over the years. Stunned, I asked him if he would do further testing, and he pointed out a few words to me like; numerous isolated and coalescent non-caseating granulomata and clinical suggestions of sarcoidosis or any other granulomatus inflammatory disease should be entertained. What the heck does that mean?
Thank God For The Internet
I rushed home from the podiatrist’s office and went suitable on the computer. Individually checked the words and the word sarcoidosis seemed to be linked to many of them. When I looked it up, my eyes were wide open as was my mouth when I kept saying, ‘I had that’, or ‘I have that’. Those purple marks on my legs, would have gone away regardless of whether I went to the dermatologist or not. They are known as erythema nodosum; another manifestation of this illness. So I took all my info along with the pathology report to my primary physician and he immediately took blood to check my T-cells, ordered a chest x-ray and a CAT scan of my chest with an without contrast. After he received the results, he referred me to another doctor in the same building. This doctor specializes in pulmonology as well as internal medicine. I brought all my new records and a copy of the pathology picture. He suggested that I have a lung biopsy that he would perform in the hospital. I agreed and the following week I found myself in the hospital having a bronchoscopy and about a week later it was confirmed that I did have sarcoidosis. Well at least it wasn’t cancer. This doctor continued to take care of me, in spite of only having one other patient with this strange illness and suggested that I see him as often as possible. I opted for a weekly visit until my illness was under control. Little did I know that it was tougher than we both expected.
The Road Back To Health
My unique doctor was wonderful and his secretary and I became good friends. It is a medical practice that has been around for many years and so many patients are up in years, and all have God and this stout doctor to thank. He is so caring that I already saw him argue with a lady who was very sick but refused to go to the hospital. He came out of his office with her, set aside her coat on, and drove her to the hospital while everyone fair waited in the office for him to return. Besides the doctor, his wonderful secretary has been with him over twenty years and when anyone calls, she immediately recognizes their voices. Actually it’s like they are her patients too, and they really are, she is as kind and caring just like the doctor.
One of the things I feared was the treatment. All websites I checked recommended prednisone as the drug of choice. I also read about the side effects, one being a round moon face and plenty of added weight. I have been fighting my weight all my life, now I’m gonna take a drug to make me fatter! My doctor understood my panic and promised me that he would do whatever he could so that I would not have to take prednisone. He has kept his word. He would check my breathing with a machine once a month and recommended inhalers and several different drugs given for a period of time and evaluated. I kept my weekly appointments and he took good care of me. He knows that I know my body better than anyone and sometimes I will see him more often than once a week. I have learned that this disease has affected me in many different ways. It runs in cycles like a roller coaster. There are great ups and terrible lows. Sometimes I have gone as long as three months just feeling amazing and then it is a horrible ride. One thing I know for obvious is you are the only one who knows exactly how you feel. Persistance is the key, and NEVER take NO for an answer.
My Suggestions To Anyone In My Shoes
I suffered from many symptoms of all different varieties. When I went to the doctor for a “frigid” or bronchitis, I never mentioned that I had purple bumps on my legs. Why should I? My shortness of breath was considered by me as the result of burning the candle at both ends. As for my memory loss…………I was so insecure that I was either losing my mind or had the early signs of Alzheimer’s Disease, but it was my brain’s lack of oxygen because of my compromised lung capacity. My glands in my neck and armpits get inflammed and really hurt during some episodes, and I also was worried that I had lymphoma. And my skin, although the bumps are gone from my legs, my skin erupts with hive-like bumps that itch or hurt, depending on the mood they are in. I have almost always had arthritis and during some cycles, my joints swell and pain like nobody’s business. I also found out tht the bone in my foot did not heal because of my body’s rejection to calcium and vitamin D. One thing I have managed to do is keep a contented attitude. I love people and while I was working, I made many friends that I called “my kids”. Two of them came to visit me yesterday and I have been retired over a year. They all know they are always welcome and can visit at any time. Over this first year several of them have come by and I get the ultimate compliment when they say the place will never be the same without me.
Please remember that you are your body’s boss. You, and only you know how you feel. If you have been experiencing mysterious illnesses, please keep a log of how you are feeling, the treatment and or drug you received at the time, how long it lasted, and list any other strange symptoms or changes in your body; no matter how stupid or inconsequencial you believe them to be. Keep your doctor informed of these changes, and bring your log with you so you don’t forget or get sidetracked at the doctor’s office. Another thing to remember…..if he or she does not take you seriously, find another doctor who will listen. Believe me, you will not be sorry! I wish you all the happiness and good health!
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