Sujata Upadhye
About Me : I am Sujata , 46 years old. I am a teacher by profession, working as one for last 25 years. I have done doctorate in medicinal plants. I have one daughter. My mother was teacher too and my father was a government servant. We were a big family of four sisters, my parents and my grand father. The house was small and we were not very rich people. But there was immense love and respect in the family. My parents were really hard working people. I inherited the spirit of fighting against odds from my mother. We were focused on getting good education. In the long run when I look back I see that whatever values were inculcated by my parents consciously or subconsciously are helping me today to fight my disease and become winner too. I have told my past to let you understand that my strength; physical and mental has helped me cope up my disease very methodically.
I am lover of yoga. I loved to exercise throughout my young age. I trained for yoga, aerobics and pranayama. I did few courses at Vivekananda Kendra in Kanyakumari, India. I was physically fit never obese but had to mind my weight all the time. I was busy all the time, I took responsibilities, sometimes too many than I could handle. There was pressure of good performance at all the time. When I took up career in coaching classes, I always had the pressure of time and completion of syllabus. When I started working on my Ph.D. the pressure grew even more. I took one year off from my active teaching job to finish my thesis. At that point there was huge pressure of money. I guess that was the triggering point; I started having muscular pains and I faced my first difficulties of the disease.
My disease: in the year 2001 I had the first attack of RA. My joints started paining. I had Ayurvedic treatment but it just got severe. I was almost bedridden for six months. I had stopped going out, lost my job, I closed my private coaching unit. I was on bed, bitter and broken. I thought this pain would never go and I would die. My daughter was just 11 years old and I used cry looking at her innocent face that what would happen to her if I die. Death was prime thought on my mind all the time. I was put on steroids, painkillers, sulfa drugs, HCQS and variety of combinations among these drugs. Steroids bloated me. I became overweight, shapeless and sadder. I was put on methotrexate and then new drug leflunomide. It resulted in a short remission period.
I started going out and took naturopathy treatment in Pune for about six months. Then I started taking a specialized treatment of yoga and some physiotherapy. Slowly and steadily I came out of the most difficult phase. But the pain kept recurring. At a time there was always one joint involved but it pained severely. This made me take too many painkillers of variety of types and potency. My observations is that when one suffers from RA and take immunosuppressant one is exposed to number of infections including typhoid, bronchitis, dysentery etc. these infections lead to pain, swelling and overall edema.
The disease first attacks the body and then the mind. The sense of loss of mobility leads to loss of confidence. One of the major factors to get out of the disease is your mental state. It is very difficult to keep positive attitude. The society and people around you start doubting your abilities. Actually it doesn’t affect your intelligence but people start doubting you and losing faith in you. Slowly but steadily you start isolating yourself, you become lonely, unhappy and depressive.
Fortunately I met Dr. Shrikant Wagh who steadied my medication, kept them moderate and most importantly listened to me patiently, giving me sufficient time to grumble and explain. One of the most important aspects of treatment was that he had time to listen to me. My smallest observation was important for him. He managed my medicines and mind in such a nice manner that today I am almost pain free, busy as usual and leading normal life.
In the treatment support of your family and your near ones is essential. It is in a way one part of medication. My husband is a level headed person. He helped me in all aspects of getting back on feet. He understood the gravity of the disease. I think it is important for the family members to understand what is actually going to happen and the limitations the person is likely to have. The adjustment in terms of height of the bed, chairs, toilet seat, staircases etc. must be seen as part of getting well and not some obstacle. A fit person is transformed into unfit person with number of limitations in daily routine. Every one else in the family must adjust to this changed person. Patients of RA are always in some pain, sometimes ashamed to say that there is pain, as they think that they are complaining all the time. Slowly but steadily the jubilations become lesser. It has great impact on overall relations.
What I suggest to achieve painless state and mobility:
- Do not stop or change medication without consulting your doctor.
- Do not try all types of drugs at one time. Ayurveda and Allopathy combined or so. Because no one has studied their interactions in body.
- Do not stop all activities. Do some moderate exercise after consulting your doctor.
- Discuss all smaller or minor changes in your pain threshold or any physical parameter such as vision, smell or touch etc with your doctor.
- Consider your doctor as your closest friend and do not feel shy to say your emotions or whatever you feel.
- If you feel that even after taking the medicines there is little or no improvement discuss it with doctor.
- Tell your doctor your satisfaction and dissatisfactions about the overall progress.
- Meditation helps a lot. Try pranayam and mediation. It has helped me immensely. Calm mind responds to medicines in better manner.
- Always think that I am going to be better today than yesterday.
- Keep a goal to keep you motivated.
- Do not get bogged down by pain and limitations, find a way to have activities in spite of difficulties.
- There is change in physical appearance, there are deformities , they make you depressed but please accept that every one changes with age and time. You are not alone.
- Try to say things clearly to your partner. Tell your partner what are your difficulties and what you want from him.
- Make all the necessary changes in the surroundings and your work place to make you physically comfortable.
- Eat right. Nutrition is extremely important. I studied dietetics to suppress my swelling and pain. I was allergic to certain food items and that caused the triggering effect on pain and swelling. I noted down all such items and omitted them form my diet. Reduced salt intake in general, increased fruit intake. Also I omitted sour item, fermented food, fine flour, processed and preserved food items completely. I eat dinner before 7PM. Eat only when hungry. Keep bowels clean by eating fiber rich food and exercise. Stomach is the key to get cured of RA. I avoid constipating items like coffee, cocoa etc. I drink lot of warm water throughout the day.
My suggestions for all doctors and researchers in the field:
- Please have sufficient time for each patient.
- Please don’t judge the patients only on the basis of number of joints involved but the severity of pain and its effect on overall mobility. Sometimes during remission phase if one joint has severe swelling and pain it should be considered as a valid symptom to change the dose or combination of drug.
- Before starting a new drug , it must be discussed with the patient completely.
- A good diet consultation should be made available. In general allopaths don’t believe in diet restrictions but as per my experience , it is one of the major consideration for drug action
- There is need to introduce a psychiatrist in over all treatment plan. RA is long term autoimmune disease. It may get in to remission but very unlikely to get completely cured. A patient needs good psychological support.
- There is always a contradiction about massage and which exercises to be done. A good co-ordination with gyms, physiotherapists is needed.
- A gathering of patients and seminars for their education is needed.
It is a great feeling to get cured and lead a painless day. It is a kind of achievement. I just want to say that it is possible to get cured if you follow diet, exercise, rest and medicines.
I owe my wellness to Dr. Wagh I take this opportunity to thank him from the bottom of my heart.