The Transfiguration of Jesus takes place on a mountain that Peter, James and John and climbed with the Son of God. It must have been a difficult climb up to the top of the mountain that day, but the three disciples probably did not complain about the effort required after they had seen Jesus’ Transfiguration.

Like every life, my life has its ups and downs. The downs usually come without effort. But that’s not the case with going up the mountains in my life. The ups require effort. It’s easier to coast down a hill than climb up.

Sometimes I’m inclined to settle for climbing a small hill now and then, because it takes too long and is too much work to climb a mountain. But I need high mountains that take me to great heights and give me an experience of God that stays with me long after I’ve come down from the mountain. 

I was never made just for the flat lands or small hills.

I was made for the mountains.

 My prayer is to have the stamina, the courage, the creativity to do what it takes to find the mountains and to climb them.

It makes all the difference in the world.

I realized I've been thinking backwards all along.  Through my history of falls, bumps in the roads and disasters, I've always know God was there to lift me up.  The feelings I would go through when working so hard on getting better with my health only to decline.  I would compare it to "CLIMBING UP A LADDER, AND FALLING DOWN".  It got really old after a while.

I see now that maybe it was GOD reminding me how strong I was and to not GIVE UP ON MY FAITH. 

Sometimes when things go well in our life we grow complacent and forget our calling.  I feel gratitude and comfort in daily prayer and meditation.  When I get away from that I find I am not healthy in body, soul and spirit. 
I will not allow myself to waiver again.    Peace to all. 

March 5^th       I am very happy to announce that I have a new caregiver who started today. She is a God send and I am very blessed to have her. She will help me in so many ways. THANK YOU GOD. 

 March 6th     Integrative Medicine at Northwestern Hospital. I had a consultation with a doctor because I am very much interested in combing the conventional medicine that I have with the therapies that they use. 
This wellness centers offers Primary Care, Acupuncture, Chiropractic Care, Massage Therapy, Nutrition, Naturopathic Medicine, Psychology, Fitness, and Tobacco Cessation. 
The doctor I saw recommended Naturopathic Medicine, Massage Therapy, and Yoga for me. 

Insurance does not cover this so I will see what I can do. 

 March 7th     I started Physical Therapy @ Rehabilitation Institute of Chicago. I will go twice a week for 6 weeks. This is for continued work for balance, strength, mobility. I highly recommend this to anyone with a weakened muscle or joint issue. It is important to go before atrophy sets in.

MARCH

It seems like so much has happened since I wrote last. It has been a month so I guess a lot has happened. 
I graduated from Day Rehab on Feb. 17^th, and felt very positive about what I took away from my 3 day, 3 month work outs. I now just have to use it at home or I will lose it. 

On Feb. 20^th I turned 50 and at first I was not looking forward to it. Last year was not a good year for me and all I kept thinking of is “great, I’m going to turn 50. What do I have to look forward to? Nothing but in and out of the hospital. 
Then it hit me. I’m ALIVE! Rehab made me feel so good. I have another 50 years to go. I want to do so much more and be here for my children, grandchildren, family and ME. 

I STAY POSITIVE, ALERT, FAITHFUL, AND ALIVE! I am truly blessed for each and every day.

For my 50^th birthday my son put together a party together with family and friends. 
The party was canceled or postponed because of the passing of my mother. 

On February 15^Th my mother passed away. She had been in the hospital and rehab since November. In the end she was suffering. I know she is at peace now. 

 I MOVE ON NOW.   Visualizing and putting into action only positive steps toward healing and getting better.

         I have been very busy with Day Rehab, doctor appointments, and managing my home. 

In January I was feeling so down and I know it was because I was starting to feel exhausted and wheezy again. Those feelings scarred me and the memories of being hospitalized twice last year haunted me. 
I was also thinking about my future 50^th birthday and normally I would be so cheerful about birthdays.

Turning 50 and being sick was weighing heavy on my mind. 

I am so happy to report that my spirit has lifted and I am looking forward to my big 5 0. I’ve met so many goals in my life and accomplished so much.  I have so many more goals to meet, and I want to accomplish so much more in my next 50. 

I PLAN ON BEING HEALTHY FOR THE SECOND HALF OF MY LIFE AND WILL CELEBRATE EACH DAY. 

 These 3 months of Rehab alone have been very challenging for me.  I feel I have met many of my goals there and have a few more to meet before I leave next Thursday, February 9^th.  

1/31 Tues         Day Rehab- I worked my butt off today.  I was on the treadmill for 8 minutes, and did my chair to stand positions 10 times.  They have a WE GAME for therapy, so someone is always doing something like boxing, and other games.  
Today a patient requested to dance.  This is good for balance, coordination, stretching and YES, Cardio.  
My therapist knew that dancing was one of my goals.  She said lets go Chris.  So GO we did.  I danced to Tina Turner’s “Rolling on the River”.  Talk about a work out.  Afterwards my Pulse Ox reading was very low.  I just had to sit and do a lot of deep breathing.    Boy did it feel good.   

All that matters is that I DANCED FOR THE FIRST TIME IN 7 YEARS!

1/24 Tues         I felt so bad, I really just wanted to stay home and not have to go out, especially to Rehab.  But I told myself to go.  If anything they would stretch my muscles, and give me some great advice. 
Well I’m glad I went because they made me feel so much better.  I was able to do some cardio to get my heart pumping and warm me up.  
Both Occupational and Physical Therapist stretched me so well they opened up my lungs by stretching my Torso and Ribs. 

When I arrived I was hardly able to breathe when talking.  When I left I felt so much better. 

1/22 Sun           God gave me strength to box up some of my Christmas things today.  Yes it’s January 22^nd and I still have my tree up along with everything else too.  As bad as I felt this weekend I kept telling myself and pushing myself to get it done.  I just pushed through it. 

I used all the tools I learned in Day Rehab.  I kept thinking ENDURANCE and pace your-self.  I drank lots of water and made sure to eat. 

I hope to make it until my Chemo treatment on Feb. 15^th.  I mean I don’t want to be hospitalized again.  I refuse to be admitted to any hospital. 

1/21/12-Sat.  Today I write feeling light headed and worn.  My chest was congested today and I can tell my lung capacity is starting to decline.  My Lung Incentive Spiro meter shows a decline since January 14^th.  I also had difficulty breathing after doing a few things around the house.  My diaphragm also shows a decline after talking for a while. 

I will wait to speak with my doctor on Monday.  There is no need to worry or rush to the hospital. 
My life is in God’s hands. 

 I will be 50 years old in February.  This is not the life I want to live.  I go in for Chemo, I feel better for a few months, and then I have the need for maintenance Chemo again.  Is this what my future is all about?

 When I’m ill I need so much homecare.  My family and friends are at the point in their life that they are overwhelmed with their OWN LIFE.  I do not wish to burden or ADD stress to their lives. 
I AM NOT THEIR RESPONSIBILITY!

 I would rather see my family and friends when I am well and can enjoy their time. 

I pray to get stronger and better.  I pray to have a normal life one day. 

I’m sorry if I don’t sound my normal strong sounding self.  I’m getting tired of this merry go round I’m on. 

1/6/12

I was looking back at my Journey Notes since I started writing. It seems like every January I set new goals, had new dreams, and fought a little harder. This January is no different. I want to fight to get stronger, eat better and continue to heal in mind body and spirit.   (I DON'T LIKE TO MAKE A NEW YEAR RESOLUTION).  I set goals and do my best to meet them. 

I am determined to take that walk along the lake.  (That’s what’s in my heart and mind). 
I hope to learn a beginners Zumba lesson. This will be the closest I’ve been to dancing in 6 years.  THESE ARE BIG GOALS. 
My every day goals are to get stronger on the Incentive Breathing Spiro-meter and to stand a little longer each day.  I work on cognitive skills and so much more for daily living. 

I would love to get started with massage therapy, do some Yoga, and Acupuncture at least once a month.  All of this cost money that insurance does not cover.  I have to be positive that this will happen. 

I will be 50 in February. I have a long life to live. I would love to get stronger and WORK again. 

 I can’t look at markers for Sclerotic. I leave that up to the doctors. 

I live each day as it comes. I am so grateful for each day. I wake up and smile. God has been very good to me. 

1/4/2012       CAN YOU BELIEVE IT’S NOW 7 YEARS SINCE I’VE BEEN DIAGNOSED WITH THE AUTO-IMMUNE DISEASE CALLED DIFFUSED SYSTEMIC SCLEROSIS?

 7 years with Scleroderma. There are markers with this disease. 5 years is the half way point and doctors can tell how long or how bad the progression of this disease will be.  My skin was pretty involved and I was starting to progress with my lungs. heart and GI system.  I had all over fatigue and weakness. I was very optimistic. Half way there was pretty good. I could do this. During the five years I had been in the hospital a numbers times for Anemia, blood transfusions, cauterizations, and Seizures. My Seizures had tripled and medication was not helping. 
I had brain surgery in 2008 to remove scarring on the right temporal lobe. 
I HAVE BEEN SEIZURE FREE SINCE OCT. 6TH, 2008.   YES, I SURVIVED 14 YEARS OF SEIZURES.

If you make it to 10 years with Scleroderma that’s a good thing.  Some people go into remission.  That could be me.   
Last year 2011(YEAR 5) was very difficult for me because I ended up in the hospital twice. It was the closest to feeling like I wasn’t going to make it. So much was wrong and it was a combination of many things that was making me so weak. The Fibrosis in my lungs became worse and I had to start Cytoxan Chemo IV for 6 months. I then was scheduled for follow up Chemo treatments for Dec. 2011 and March 2012.

Chemo ended in September 2011 but by October I was starting to feel weak again. I was having trouble breathing and eating and ended up in the hospital November 9th for 2 weeks. I needed to have my Chemo treatments early.   I also learned to eat better and had a blood transfusion.  

Upon discharge I was given a choice to go into a Rehab Facility or go to an outpatient Day Rehab for 3 days a week, 3 hours a day.    I choose Day Rehab. 

 Those who follow my blog know my experience with RIC Ravenswood Day Rehab. My end date will be coming soon and I am so happy I was referred to this kind of therapy. I was always one to push myself but they teach you …………..

ENDURANCE, PATIENCE, CHALLENGE.    I also like the word ACCEPTANCE. Once you accept what is given to you, there is so much more you can do with your life. Help others who are less fortunate, and others who are going through the same thing. 

The entire team at RIC Ravenswood Day Rehab is unique. They have their individual specialties but they work well together as a team. Their program works great for so many reasons.   What a strong, strong team. 

12/19     I fell out of my chair on Monday and the chair fell over on me. I had to try to get myself up but I could not.  It took awhile but I was able to call my neighbor to pick me up.  Some day I'll be strong enough to pick myself up off the floor. 
On Tuesday 12/20, I went to Day Rehab.  I worked pretty hard. I was walking up stairs 3 stairs and reached up and down for Occupational Therapy.  I felt the pain in my lower back the next day.   My tail bone was inflamed and my left Sciatica was in pain.

12/26/11         Today I was back in Day Rehab. I wanted to get some stretching. My lower back is still very sensitive but I pushed myself through some exercises. My Cognitive skills were slow because I had a headache. Occupational therapy was difficult because it was hard to reach up and down. 
Physical Therapy was tough but we did some strengthening exercises. I walked on the treadmill, sat up and down without hands 20X, and had my legs stretched. 
I CAN TELL MY LOWER BACK IS STARTING TO SWELL…….

 I learned to get through the pain with breathing techniques, stretching and ENDURANCE. I knew it would take about 1 week for the swelling to go down. 
Unfortunately I did not get to do the things I wanted for Christmas. No baking,

·         3 STEPS FORWARD 2 STEPS BACK / THIS SEEMS TO BE THE STORY OF MY LIFE.

Throughout my adult life with Epilepsy and Scleroderma I’ve taken 3 steps forward 2 steps back. I’ve learn to gain strength through this all. My recent hospital stay really got the best of me and I felt as if my SPIRIT was broken. Tired and worn, I just wanted to give up. 

I'M feeling a little stronger, wanting to INSPIRE OTHERS, setting GOALS, living for my children.  ALL OF THESE MAKE ME WANT TO LIVE AND BEAT SCLERODERMA. 

Thank you to my Rehab therapist, especially “Monica” for pushing me. 

Thank you to my Psychologist for always knowing the right things to say.

Thank you to so many who surround me and support me always. 

 KNOWING YOUR LIMITATIONS AND KNOWING WHEN TO PUSH YOURSELF IS KEY TO A HEALTHY LIFESTYLE.

I CHALLENGE YOU TO ACCEPT what God has given you.
If you feel you are having a bad day, dig deep within yourself for strength. 

ACCEPT…….

·         The life of each day and many more to come,

• ·         You must use the support of those who love you.

• ·         The support and tools available to you,

•  Stand up to your doctors and tell them what you want.

• Go for a second opinion if you are not happy with what is working for you.

 I AM MOVING ON!

12/12/11            I missed 2 days of Day Rehab last week because I had my stomach cauterized. This Monday when I returned to Physical Therapy it made me feel so rewarding and positive. Just the smallest amount of strength can make you feel so confident. I will continue my course with Rehab and learn some home strengthening exercises.

My therapist teaches me ENDURANCE. 

WITH NUTRITION AND EXERCISE I HOPE TO STAY WELL FOR A LONG TIME!

11/30/11            Started Ric Ravenswood Day Rehab. I go 3 days a week for 3 hours a day.   I have 1 hour of intense Physical therapy, 1 hour of Occupational Therapy and 1 hour Speech Therapy. (When I was released from the hospital I was given a choice of going into a Rehab Facility or trying this Day Rehab). I did not want to go into a Rehab facility. AFTER the first day I was ready to quit and not go back. It was so intense and strenuous on my mind and body. I was feeling defeated and ready to GIVE UP!  After talking to my son he reminded me; ”Mom, you never give up.  You are the strongest person I know.  Just give it a few more days".  

I am here to say "THANK YOU DANNY BOY" !   " I am so happy that I DID NOT GIVE UP"! 

11/28/11            I saw an Eye specialist due to the recurring Sty’s in my right eye. Dr. Chambers said because of my Dry Eye Syndrome I do not have the tears that are needed to rinse away the debris in the eye. Also the oils in the lid are just sitting there and clogging ducts. I already have Punctal Plugs in lower eyes. He inserted Punctal Plugs in upper lids. This will help increase tears. I am to use warm compresses morning and night and use lid scrubs daily. 
My vision is double and blurry in the Right Eye. There is NO Guarantee that it will get better Sty’s heal. I CANNOT SEE!

November 9^th through November 17^th I am admitted to Northwestern hospital:

I started off with oxygen, fluids, a lung cat-scan, EKG, Cardiac MRI and lots of fluid. Their 1st goal is to increase my food intake. I try a new product called “healthy shot” it is a high protein drink.
After seeing the team doctors from my floor and my personal team of doctors they put their heads together and decided it was OK to move my Cytoxan chemo treatment up from November 28^th. My hemoglobin kept dropping and I was given (2) pints of blood. 
Because of Myositis, my muscles are so weak and that makes swallowing and eating a lot more difficult.   I had to work with Speech therapy, Occupational therapy, and Physical Therapy.   

 Upon discharge 11/17 my doctors recommended that I go into a Rehab facility. I declined so they recommended out-patient Day Rehab. I will go 2 to 3 times a week. 

I was in the hospital due to: Decline in Diffused Sclerosis, Sjogrens Syndrome, and Myopathy; Deficiency in nutrition. 

 I have increased my eating now that I am home. I started a new medication called Megestrol which increases the appetite.   It must be working.  

 With nutrition and physical therapy I hope to stay away from urgent hospital visits. I now have to find the treatment that will work for me after my next Cytoxan treatment in March.

10/14 through 10/16 Have not slept well on Wed., Thurs, Friday or Sat. evening. I have been working with Physical Therapy and feeling pain from it. 

Tues. P.T. worked upper arms and I felt pain next day in shoulders, neck and jaw. I might also feel BAD because I need Upper Endoscopy next week, and last Acupuncture was Oct. 1st. 

SUN:   . I FEEL AWFUL            I’m SO Tired. I did not sleep well. Bed early but up and down all night. I stayed in bed sleeping off and on until 3pm.

I STOP and SMELL THE ROSES.

It has been 3 years on October 6^th since my brain surgery. 

I have been SEIZURE FREE for 3 years and I am so blessed.  

Those many years, days, and hours of seizures remind me of how life was and could be.   It could be worse. 

I appreciate the life that GOD has given me for I have learned a life time. 

SPIRITUAL GUIDANCE

Do not look forward to the changes and chances of this life in fear; rather look to them with full hope that, as they arise, God will deliver you out of them.  He has kept you hitherto,--do you but hold fast to His dear hand, and He will lead you safely through all things; and, when you cannot stand, He will bear you in His arms.  Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day.  Either He will shield you from suffering, or He will give you unfailing strength to bear it.  Be at peace then, and put aside all anxious thoughts and imaginations. 

10/13 Dr. Hinchcliff spoke with me about treatment to control (ILD) Interstitial lung disease. 

Studies show that best results to keep (ILD) at bay is maintenance care.  3 and 6 month follow-up treatments after the initial Cytoxan treatment is recommend.  I will schedule for 12/21 and 3/21/2012.

She suggested I try Cellcept or Imuran again and I said NO. (Neither worked in the past and I had bad side effects).  

 Dr. Hinchcliff also suggest I see Dr. Boin at Johns Hopkins in the June 2012. She values his opinion and there ongoing ideas and treatments. She wants me to see what he thinks and what he suggests for future treatment.

I will go see Dr. Boin in Maryland, I want to continue to work with Acupuncture, and I’d like to work with body massage therapy. This is beneficial for the skin and all over stimulation of the immune system.

ACUPUNCTURE, MASSAGE THERAPY, AND A TRIP TO JOHNS HOPKINS ALL TAKE MONEY. 
I WILL HAVE TO WORK ON A WAY TO AFFORD THESE NECESSARY TREATMENTS. 

 10/10/11        I went for my PFT on Monday so I hope to get some results soon.

·         My labs and hemoglobin was holding steady at 10.2 since August and I thought it was due to the benefits of Acupuncture. BUT......unfortunately my labs dropped again and I am scheduled for an Upper Endoscopy with Cauterization on Oct. 26th.  Now I know why I've been feeling so punked out.

·         I started with Physical Therapy (2) weeks ago and I am going twice a week until the end of November. This makes for a very busy week.

·         Acupuncture: I was trying to incorporate my Chiropractor into my therapy once a week then thought every other week would work since I am going to P.T.
I am thinking twice about it now. 1) It expensive and cutting into my budget. 2). She is really pushing me to go full force Holistic and that is something that I'm just not ready for, nor I can afford. 3) My doctors want me to be very cautious with this treatment and my Neurologist warned me to stay away from any manipulation around the neck. I am also to stay away from HERBS AND FLOWER ESSENCE. 4) I will ask my Gastro-intestinal doctor about juicing and if he thinks my GI system can handle it. This too is very expensive with buying the juicer and the amount of vegetables and fruit you have to purchase.

 I am looking forward to the beauty of the holiday seasons.

My positive attitude gets me through each and every day. It's also helps me inspire others and help them get through their issues.

9/26 and 9/28      I started physical therapy and will go twice a week for 8 to 10 weeks. 
I firmly believe that this is an important part of improving MY quality of life. 

I have many doctors appointments and tests in October so I will Blog again when I have results.

I look forward to the fall and holiday seasons.  

I HAVE FAITH THAT I AM GOOD HANDS WITH MY CHIROPRACTOR.  

God Bless to all.  May all good things come your way. 

Thank you for your support!

I started Acupuncture in August for my back and continued with treatment each week.  9/29 will be my 6^th treatment and it has helped tremendously Not only has my back felt better but I feel better all over.   

 My last upper endoscopy was canceled in August because my blood pressure was too low.  I was also in need of an Iron Infusion in August or early September.  The GREAT NEWS is that I don’t need either one right now.  My hemoglobin is holding steady at 10.3 and my Iron has increased.  I know this is because of Acupuncture.  

9/21         I had my last Chemo-Cytoxan treatment. I started in March and went once a month until September. I missed one month because of back problems. Otherwise I got through treatments great. I lost my hair and was pretty exhausted and tired all summer long but all for the good I hope. We will find out when I go for my pulmonary function test on October 14^th and see if the fibrosis in my lungs has gotten better. 

I’m so sorry to hear about your set back. Have faith and hope, stay strong and positive. God will lift you when you when you are at your weakest. 

I too have an autoimmune disease called “Scleroderma”. Mine is diffused systemic so it pretty much has affected my entire body, skin, organs, muscles, arteries, etc. I also have an overlapping connective tissue disorders: Sjogrens Syndrome, Reynaud’s Syndrome, Fibrosis of the Heart & Lungs, Anemia, IBS, GAVE, and now Deteriorating Disk disease. 

I have journey with this illness since fall of 2004. I have fallen and gotten up many times. 

INSPIRE.COM    http://www.inspire.com/groups/ This is a great discussion SUPPORT group.   

REMEMBER TO LOVE YOURSELF and you will get through this. We forget in life who we really are and we go like robots through, work, family, fitness, run, and run, run. We do not make time to enjoy PEACE and family. 

I have been given the opportunity, or should I say, I have been forced to REST. I now meditate and pray daily. I notice what’s around me. I thank GOD for the beauty he provides. I am so grateful to be alive each day.  I had to learn to love me. Everyone always liked me for my physical beauty, style, athletics, and charm.  Scleroderma took that all away from me. I was devastated. Why me? I went through that stage in the beginning for awhile. I finally had to figure out it was just not me. There were so many others and many others worse off than me. I ACCEPTED the new me. 

There are so many with AUTOIMMUNE diseases but NO ONE speaks out LOUD ENOUGH to hear us. We don’t have the funds for big walks or events. 

My dream is to have a NATION WIDE “Walk for your autoimmune day”. The funds could go to http://www.nih.gov/ National Institutes of Health.

FINALLY, I pray for you a peaceful journey. YOU have the power to help so many others. I ask God each day to send me someone that I can help. Through my painful experience comes knowledge. I find peace when someone writes back and says they feel better and I helped them get through their pain.

I am here for you if you need someone to talk to .

A friend named Chris

8/27                       Just as my MRI shows my disks having Degenerative Disk Disease, I feel my body slowly degenerating before me.
I would not wish this chronic illness for any one. May God take this disease from the earth as well as all illness. 

8/26-8/27              I am feeling the effects of the Chemotherapy. I’ve been so very tired and exhausted.

Just part of the side affects. This should only last a week I hope.

8/26                        My Chiropractor made a house call and treated me with massage therapy, acupuncture, and mild chiropractic work.

This time I felt immediate relief when I got off the table.  My joints did not feel as stiff. 

8/24                       5^th CYTOXAN CHEMO TREATMENT      My blood pressure was high enough that I was able to complete my chemotherapy. Finally I got through this. I am month behind but at least I’m back on tract.
One more to go on Sept. 21^st.   I then will have a Pulmonary Function Test in October to determine if the Chemo treatments have helped my lungs. 

8/19- 8/24          My blood pressure is higher when I take it at home manually.

I believe the change in medication is working.  I am also drinking more water and Gatorade. 

8/18                       I saw my Pulmonary doctor today. My blood pressure is still low, 70/50, so she reduced my Cozarr that I take for Raynauds Syndrome. I was taking 50mg am & pm.  I will now take 25mg am & pm.

I just hope this will work for me in the fall and winter months when I am quick to respond to the effects of the cold. 

8/17                       Upper Endoscopy with cauterization is CANCELED due to Low Blood Pressure.

 BP went from 80/40 to 70/30 after a sample of anesthesia. My doctor could not continue with the treatment because he could not give me the full dose of anesthesia.   He will not reschedule Upper Endoscopy until Low Blood pressure is under control.

8/16                 Saw my Cardiologist. She did not like the way I looked and my blood pressure was low, 84/46.

She will talk to my Rhuematologist about reducing my medication Cozarr which I take for Raynauds Syndrome but it is also a Vasodilator.  

8/12                        Pain in LOWER LEFT BACK=  PAIN THRESH HOLD IS #10.   Pain is starting to ease up. I believe acupuncture helped. 

8/13                        Pain in LOWER LEFT BACK=  PAIN THRESH HOLD IS #5.  I am now able to walk with my walker, NO assistance. It is almost a week now. 

8/11                        Pain in LOWER LEFT BACK. PAIN THRESH HOLD IS #13.
I could no longer take the pain and asked my son to look up a chiropractor for acupuncture.  He found one in the neighborhood that could see me today.  Better yet she made house calls.  Dr. Elaine Wagner came to my home
this afternoon to evaluate me and proceeded to do ACUPUNCTURE. 
I will follow with weekly visits. 
I did feel some relief by the evening.   

I will also start going to Physical Therapy in September 2 X a week to try and strengthen my back. 

I am not able to take pain killers so I must give holistic medicine a try. I am very excited about this. I don’t need any more drugs in my body. 

8/10                        Canceled 5^th Cytoxan Chemo treatment because of back pain and GI issues. Valium is causing the same GI problems. My PAIN THRESH HOLD IS #13. I cannot put any weight on left leg or do anything without being in PAIN.   My son Dan is pretty much walking for me and doing everything for me.  Thank GOD he is here. 

8/8/11                    Pain in LOWER LEFT BACK. I could not get out of bed without assistance. In order to get a shot of Cortisone I must first get an MRI.   Scheduled for an MRI tomorrow.   Pain clinic cannot get me in until a week from now for a shot of Cortisone. 

8/5                          My PCP advised that I come into the ER for fluids if I am not able to hold fluids down.

 I told her I would like to try to get better at home and not be in hospital all weekend.  If I did not feel better I would come in.

By Saturday, 8/6/11 night my back was starting to ease up. 

8/3                          Canceled 5^th Cytoxan Chemo treatment because of SEVERE BACK PAIN and GI ISSUES. 

DISCONTINUED TYLENOL 3!

8/1/11                    I had a Cardiologist appointment today but had to cancel because I woke up and could not move. I have severe lower right back pain. I could not get out of bed and needed assistance to get up and down. (I started taking Tylenol 3 with Codeine), which I had from last month when I had lower back pain on the right side. 

8/2- 8/3                  Debilitating back pain. Still taking Tylenol 3 with Codeine. By Wed. August 3^rd I am having major GI issues. I am nauseous, vomiting, cannot eat, I have severe diarrhea, and my Acid Reflux is so bad that I feel like I have a hole in my chest. 

7/8/11                    I had an Iron Infusion today. Iron and red blood cells have been declining.

It's hard to tell whether I'm so tired because of Anemia or because of the side affects of Chemo.  I'm hoping the Iron Infusion will help me feel a little stronger. 

7/6/11                    I had my 4^th Cytoxan Chemo treatment. I do pretty well with them other than feeling very fatigued and tired after ward.   I know it’s helping fight my lung fibrosis. I was also scheduled for an Upper Endoscopy with Cauterization but that would have been a bit too much for my body to handle.  This will have to be rescheduled.

June 17th              Pulmonary Function Test. My doctors will see if the Cytoxan treatments are helping me. (I have faith).

I am scheduled for another Upper Endoscopy with cauterization for my stomach on July 6th.  When my GI doctor cauterized my stomach on June 1^st he found quite a bit of bleeding.  He wanted me to return in 1 month.  Nothing to worry about.  This is just something I have to deal with.  As long as my doctor keeps a handle on the bleeding with cauterizations I am good.  If he didn’t I would have to have blood transfusions all the time and that’s not so good.  I have a lot of trust in my doctor.

6/8/11                    3^rd Cytoxan Chemotherapy treatment. I’m getting through the treatments very well. No terrible side effects, mostly just fatigue and headaches.   My hair is almost all gone. I FEEL POSITIVE THAT THE TREATMENT IS WORKING TO STOP THE PROGRESSION OF LUNG FIBROSIS.   My lung capacity feels better. I can now talk without running out of breath. 

My goal is still to be able to enjoy a nice walk. I am getting there. 

On June 16th  I had a Pulmonary Function Test.  My doctors will see if the Cytoxan treatments are helping me. (I have faith).

I am scheduled for another upper endoscopy with cauterization for my stomach on July 6th.  When my GI doctor cauterized my stomach on June 1^st he found quite a bit of bleeding.  He wanted me to return in 1 month.  Nothing to worry about.  This is just something I have to deal with.  As long as my doctor keeps a handle on the bleeding with cauterizations I am good.  If he didn’t I would have to have blood transfusions all the time and that’s not so good.  I have a lot of trust in my doctor.  

I am fighting a low hemoglobin, iron, and red blood count. An upper endoscopy with cauterization on June 1^st will stop the bleeding in my stomach for awhile.

5/6/11    In the mean time my hematologist wanted me to start “Aranasp” shots (Epoetin) http://www.webmd.com/a-to-z-guides/epoetin  This shot is long acting and given every 2 weeks as long as the hemoglobin is below 10.5. 
The drug helps red blood cells to grow. It is used to prevent or treat anemia. MY NEXT SHOT IS SCHEDULED FOR JUNE 3^RD.

Second Cytoxan infusion treatment scheduled Wed. 5/13/11.   I can only hope that Chemo infusions continue to go well and that I will have success from them.   With each treatment over the next 5 months, Cytoxan will increase.  

My journey continues to go on and on and on and on………This is a good thing.  I am fighting the fight.

Don't stop believin'
Hold on to the feelin'
Streetlights people

 Love, peace, and have a great summer.  Take time and enjoy the beauty of this earth.  You deserve it

May 8^th- Mothers Day
I am so proud of my two babies and of being a mother. Being a mother is the best gift GOD could ever give a woman. Like all things in life sometimes you go through some struggles while raising your children. You get through them, grow old and realize how lucky you are to have each other. 

I love life so much and I am so happy to be here for my children, family and friends.

 I got through my 1st Cytoxan Treatment without any major side effects. I had some body aches & pain, fatigue, headache, but nothing more than that.   By day (10), I was even feeling some benefits from it. I was able to go to church and have friends over. This is a good thing. I pray for continued success.

4/4 through 4/6             My heart has been racing for the past few days. I will be happy to feel some kind of normalcy. 

 4/5       I received a call from the infusion center and they have scheduled my first "Cytoxan" infusion treatment. 

It will be next Wednesday April 13th, starting @8:30AM.  The nurse said I should plan on being there for 6 hours.  2 hours of medication prior to treatment, the Cytoxan treatment last 1 hr., and medication afterward for 2 hours.
(Treatments are monthly for 6 months). 

http://www.jrheum.com/abstracts/abstracts08/13/056.html

I look forward to good results.  This is a Chemo drug so I know it will also knock me on my ass, but I know you have to take the good with the bad.  I pray that my summer is not a complete goner.  I want to get out and walk along this beautiful lake.

 I WANT TO SEE MY BABY GRADUATE ON MAY 21ST.  Please pray that this happens for me.

I’ve tried numerous medications and treatments.

 WITH GOD’S HEALING HANDS I HAVE FAITH THAT THIS TREATMENT WILL GIVE ME QUALITY OF LIFE, SO THAT I CAN LIVE A BEAUTIFUL LIFE WITH MY FAMILY AND FRIENDS.

3/17/11  Dr. Hinchcliff discussed treatment for lungs and inflammation. She would like me to start Cytoxan injections a.s.a.p to stop the progression of fibrosis. The Cat Scan I had on 2/23/11 showed more glassing on the lungs.

3/23/11   Dr. Hinchcliff spoke with my Pulmonary doctor and she agrees that because of the Cat Scan results I should start with Cytoxan treatments.
I will pray that this will work without complications.  It's a 6 month treatment so I hope the Cytoxan won't wipe me out all of that time.  I feel positive that this will at least get me back to my baseline.        
I am waiting to get a call with the scheduled dates. 

3/10/11                        A followed up with my primary care physician. She expressed that  she was happy all my tests in hospital showed no need for longer stay, but I however need further out-patient testing with an ENT specialist and Pulmonary Function testing. 

I am feeling better than I did 2 weeks ago. 

My doctor felt there were/are many reasons for my symptoms of exhaustion / weakness / difficulty breathing.

My Auto-immune disease, low iron, bleeding stomach, acid reflux, bacterial overgrowth in lower intestine, and fibrosis of the lungs.

Also difficulty eating, and keeping things in because of bacterial overgrowth cause an increase in weakness.  

I will continue with home P.T. and O.C.  Rehab to try and gain some balance and strength.  (I FIND MY STRENGTH IN GOD)!

MY FAMILY HAS BEEN RIGHT AT MY SIDE EVERY STEP OF THE WAY. THEY ARE THE BEST. If you don’t tell you family and friends you love them every time you speak to them, it’s time you start. Those 3 words are so powerful when you mean them.

I love you and thank so many for the support and prayers that surround me.

March 9, 2011- Ash Wednesday

Since I’ve been home I’ve had Physical Therapy twice a week. I hope to gain some strength and flexibility through this but it will be a LONG process.

Today is my first day without 24 hr care. I miss my helpers but I need to feel I can be independent. I can do just a few things in my home before I am out of breath.  I will have a home assistant twice a week. Of course my family still visits but not all night long.

I am so blessed to have such a loving son, daughter, brothers, sisters, and FRIENDS.

 CONTINUED FAITH. 

PEACE AND BLESS TO YOU THIS LENTEN SEASON.

3/4/11             Friday: My stomach is killing me. Bloating, cramping and cannot keep food in my stomach since 3/2. I am so weak and sore. THE HIGH FAT, HIGH CALORIE DIET, that the hospital and Nutritionist put me on really affected my IBS. My Gastrointestinal told me to take the samples he gave me of (XIFAXAN -rifaximin 550MG) for bacterial overgrowth. 

3/6/11             Sunday: I ate nothing but white rice all weekend. That and the Xifaxan controlled my IBS.   I also started feeling better in the chest. My voice got stronger. I am able to talk longer and louder before losing it. I BELIEVE THIS ANTIBIOTIC HELPED.

2/25/11           I came home to a 24 hour care from my family. As usual they all went into emergency CARE mode and had a chain of command in place. Cooking, cleaning, feeding me, giving me my medications, making phone calls, and setting up future care for me. I am so BLESSED to have such love and care.

2/18 through 2/22      Having hard time breathing and talking. I LOSE OXYGEN AFTER SPEAKING FOR A FEW MINUTES.   Could it be HEART BURN??
I FEEL TERRIBLE. NAUSEOUS / HEADACHES/ TIRED/ VERY WEAK/ HARD TO BREATH AFTER TALKING OR DOING ANYTHING.

2/22 through 2/25    I had an appointment with Cardiologist. Cardiologist decided to ADMIT ME through the emergency room on 2/22/11. She did not like the way I looked and felt I needed more testing because of my symptoms. A Cat Scan, Lung Scan, EKG, blood work and many specialists ruled out anything life threatening. I had my EGD while in patient. I also had a rehab evaluation. They wanted me to go into a nursing home for rehab. I did not wish to. They scheduled me for home rehab.

I am to follow-up with primary care, see an ENT specialist and have a PFT with a bronchial dilator.

I was told they see a little more glassing on the lungs. 

My Primary Care spoke with all doctors and they felt I should first gain weight, then gain strength. My Acid Reflux is irritating my lungs and throat. 

I will ask my doctors if these symptoms could be due to a weak diaphragm or Dysphonia (Achalasia) since I have Myositis.

2/10/11           FEELING TERRIBLE.  The side effects of low IRON AND HEMOGLOBIN are affecting me. I can't think, I have headaches, very lethargic, no appetite, diarrhea, nausea, depression

The feeling of malaise is taking over.  I am so weak.

Food is not staying in me.   I have difficulty breathing after taking or doing minor things.

2011 A BRAND NEW YEAR

I WAS DIAGNOSED WITH SCLERODERMA ON JANUARY 4TH, 2005.  It's been 6 years now. 
I've had many complications and conditions that came along with this Chronic illness.

I've learned to accept what comes my way and breath deep.

My biggest complaint for 2010 was that my heart has been bothering me.  I have difficulty breathing doing minor things. All I can do is have good communication with my doctors and have faith in GOD.

 I could write in this journal daily and moan about the pain I’m constantly in and complain that I can’t bend down to pick things up. The fact that I need a home health assistant once a week to help me at home and cook for me is something that is part of my life.
I fell out of bed the other day and could not pull myself up.  I had to call my neighbors to help get me up.  It's frustrating at the time but I'm so glad I am surrounded by good people that help me.  (I would love to one day get my strength back to do these simple things). 

 I would rather write to tell you I am getting along just fine. I’ve seen many bad days so I know a good thing when I see it. I just deal with what comes my way. 

 I AM AT PEACE.   I did not think I would make it past 5 years with Scleroderma. My stomach was bleeding constantly that I needed cauterizations every 2 weeks, then 4, and 6 weeks. I finally was able to spread them out to 8 weeks apart. That along with blood transfusions and iron transfusions was just part of my life. 

Last year was the first year since 2005 that I only had to have 2 cauterizations for the bleeding in my stomach. WOW! 

I truly feel blessed.   I really thought maybe this was it, my road to recovery. I would finally be free. 

Then in August/ September 2010 my heart really started bothering me. All my tests show it's nothing urgent but I must be monitored closer. 

 To start the New Year off, I will need a cauterization and iron infusion. Blood work showed everything dropping.  My Iron, hemoglobin, red blood cells, and everything else is low.  

 “Just when you think you’re on your way to a new life, Scleroderma taps you on the shoulder and says “remember me”!

 1/4/11             Right heart catheterization: RESULTS Mildly elevated right heart pressures.

11/17                Dr. Dematte my pulmonary reviewed my PFT results from 10/25 and agrees with Dr. Maganti my cardiologist, that I should have a right heart catheterization. The echo results don’t always give a true result so this test is necessary in order to check my increased “pulmonary artery systolic pressure of 51 mmHg” from the echo test.

Going through the usual blood tests, therapy, etc.  I'm so tired all the time.  My heart or lungs are slowing me down.  I feel out of breath doing the least little thing.

"I expect to pass through this world but once;

Any good thing therefore that I can do, or any kindness that I can show to any fellow creature, let me do it now;  let me not defer or neglect it,

"For I shall not pass this way again".

MY GOAL IN SHARING MY JOURNEY IS TO HELP OTHERS. 
Through the Scleroderma Foundation Chicago Chapter, I started a SUPPORT GROUP on the north side of Chicago. Christinejimenez0@gmail.com. 
We meet the last Saturday of each month.
I also provide phone and email support.

I strongly recommend that YOU join a support group. 
If you are dealing with a chronic illness, are a care giver, family member and friend who provides support;  a support group could be very beneficial for you. 

    SCLERODERMA FOUNDATION   http://www.scleroderma.org/ 
Improving lives through mutual support,
medical and public education,
and research.

TEAM INSPIRE = https://www.inspire.com/ Discussions, meet others like you, post a journal entry,

INTERNATIONAL SCLERODERMA NETWORK =             http://www.sclero.org/index.html

Recommend DVD               “Assisted Yoga for Scleroderma” with Kathy Randolph http://www.scleroderma.org/store/store-video.shtm

PLEASE BE YOUR OWN ADVOCATE. Educate yourself as much as you can.  RESEARCH and go to educational seminars.  Be prepared to ask your doctor questions. Get a second opinion if you feel your doctor is not helping. 

BE PATIENT! Treatments and medications have progressed in the last 10 years alone. There is much hope for us. 

THIS IS MY JOURNEY…… Won’t you Journey with me……..

October 2010

10/13                     Past week my neck and head hurts. It hurts to hold my head up. I've been feeling very lethargic lately, especially today. 

I was very tired today, sore body, headaches, jaw hurts.

10/18                     Cooking Up A Cure. Volunteered for this charity event for the Scleroderma Foundation. Great Event. 

10/21                     Lab work shows my hemoglobin 11.2. Cholesterol is still high. CK level is 277 still high. 

10/22 & 23           Feel’s like I’m getting a cold. Tired, chest and lungs felt congested. EVERYONE AROUND ME IS SICK. STOP coughing and sneezing on me please…

10/25                     PFT test. I’m hopeful to see what the results are. My lungs and heart seem to be working a little harder.

10/29               Followed up with primary physician because of increased complaints of fatigue, difficulty breathing upon exertion (bending down), and complaints of chest and lungs bothering me.  She examined me and felt I have a viral infection in my lungs. 
Because of the fibrosis in my lung and heart I am highly susceptible of infections.  She gave me a ZPAC.  Hope it works. ( I was also diagnosed with high cholesterol and given Lipitor.  I have really been trying to take care of it with a better diet but that didn't work).

10/30 & 31            I felt worse today.  I could hardly breathe after talking.  I hope this ZPAC works fast.

9/3/10              Visit with Dr.Hinchcliff, my Rheumatologist. We discussed medication, (Imuran) that I am taking for immunosuppressant. It is not working to relieve pain or to help strengthen muscle tissue. My CK/CPK levels are still increasing. Imuran is also known to cause cancer if taken long term. I will stop Imuran and see if my CK levels really spike; then decide how to treat. She also spoke with the doctor I consulted with at Johns Hopkins and discussed my reaction to IVIG treatment.   Dr. Boin @ Johns Hopkins explained to Dr. Hinchcliff that there are different medications used in the treatment of IVIG. (Apparently the medication that Northwestern used with my IVIG treatment is MOST likely to cause side effects). Dr. Boin said they use “Privigen” IVIG treatments and most importantly that it is infused at a very, very slow rate. 
I was given “Humunex” @ Northwestern, and I wouldn’t say that they knew the correct speed of infusion. 
If I wanted to take another chance with IVIG I could try U of Chicago and see what medication they use.
 I don’t think it will be soon. I still have the image of MENINGITIS in my head and it doesn’t feel good. 

**Dr.Hinchcliff is not too worried about the ECHO results and increase I does not worry too much about the arterial pressure. Instead of rushing into having a Right Heart Catheteration she suggests waiting and having another PFT in October. 

8/5/10              I was referred to a Speech and Occupational Therapist via my Neurologist. I still have many complaints of confusion, forgetting, not understanding, mixing up appointments, etc. I am hoping that Occupational therapy will sharpen my memory skills and also give me some practices to help me remember.  (All due to years of seizures and possibly the effects of brain surgery). As my therapist said; “At least I recognize and I’m aware of the situation”. Therapy can help by teaching me different techniques on how to remember.  There are many who have memory loss and don’t realize it. 

8/6       MRI/ECHO with Bubbles
Findings: Left ventricular size, systolic function, wall thickness, and wall motion are normal. Left ventricular diastolic function is normal. No significant valve abnormalities. Right atrial pressure is within normal limits. The pulmonary artery systolic pressure = 51 mmHg.

Compared to prior echo on 10/5/09, the PASP is better defined due to saline augmentation.

7/13       PULMONARY FUNCTION TEST

Findings: Pulmonary function looks a bit improved.

The vital capacity and total lung capacity are both a bit better. The diffusing capacity is stable. 

Regarding Echo study:  This is the first time they were actually able to measure the Pulm Art pressure but I am not confident as it is NOT consistent with the cardiac cath report.  I will discuss with Dr. Maganti. 

Dr. Jane Dematte-Pulmonary

Concerned doctors:           THE ECHO STUDY COMPARED TO PFT STUDY HAS MY CARDIOLOGIST CONCERNED AND WANTING ME TO GET ADDITIONAL TESTING. (Right Heart Catheterization).

8/11/10            EGD with cauterization scheduled for 8/11/10. My hemoglobin is running low again. This will bring it back up for a little while but not sure for how long.  This is #30 since 2005.

EGD CANCELLED! I had blood work on 8/9/10 and my hemoglobin was higher, 11.0, Hematocrit was 33.6. We decided to hold off on EGD for the 11^th. I am to watch my hemoglobin and contact my GI doctor.

My current treatment for Scleroderma is Imuran 50mg 1 tabAM and 2 tabs PM.
EMAIL TO DR. HINCHCLIFF:

(I have been on Imuran since 2/28/10) Dr.Hinchcliff wanted to give it 3 months to see if it brought my CK level down).
“If you would like me to stay on Imuran, I could use a new prescription. Can you fax a new prescription to the Walgreen's in the hospital for Imuran 50mg (2 tabs AM) (1 tab PM).

“For now, I think you should stay on the imuran”
“I see that you wrote my Aldolase was normal. I see that my CK level is still peaking and my Sedimentation rate is higher than it's ever been. In June it was 21 and when I took it on July 7th it was 84.
What do you think??? It has never been that high.”
“I think you have active inflammation in your body and I would like to consider treating you with some steroids. In know you have had a bad reaction to prednisone in the past, and since you are feeling so well right now, I would leave well enough along”.
Monique E. Hinchcliff, MD

 IVIG INFUSION TREATMENT

I was scheduled and admitted to Northwestern Hospital on Wednesday, June 16^th for IVIG infusion under 23 hour admission / observation on the Neurology floor.  I was hooked up to leads in case of a Seizure and I am happy to say I DID NOT have a Seizure.  I was discharged late Sunday June 20^th instead of the 17th. 

It turned out I had complications to the IVIG and got violently ill.  I was discharged with Aseptic Meningitis due to IVIG.  I was in such pain.  It hurt to talk, open my eyes, and do anything basically. I had fever, chills, severe headache pain, nausea, and throwing up. I did not eat the entire time I was there. They tried a few medications to relieve the pain and nausea but nothing was working. I had a Cat-scan and an MRI to rule out clotting of a vein in the neck or brain but those turned out clear thank god. By Saturday night the anti-nausea medication  starting working and that night they started me on a steroid through my IV to relieve the inflammation in my brain.

I am now so happy to be home after a week stay in the hospital. I guess the good news is that I did not have a SEIZURE. Yeah……

I can’t say I see my doctor ordering the rest of my IVIG treatments. I should have (4) more months of treatment as an outpatient. Each treatment lasting 2 to 3 days.

6/10/10           I am scheduled for inpatient IVIG treatment on 6/15/10. My RA from Northwestern Medical received the notes from Dr. Sweiss along with the results of the EMG test that I had. I also had labs on June 7, which showed that my CK levels are still on the rise. HER email notes; “Given my CK results and the EMG results I would like to schedule your IVIG treatment”. The first one would be in-patient on 6/15/10.  (I have been on Imuran since 2/28/10) Dr.Hinchcliff wanted to give it 3 months to see if it brought my CK level down).

It pays to be persistent. Don’t ever give up on something you believe in. Especially when it has to do with your health. YOU MUST RESEARCH, CHALLENGE, ASK QUESTIONS, GET SUPPORT. You cannot do it alone.

1/1/2010  HAPPY NEW YEAR

I will start my support group for the Scleroderma Foundation.    Chicago North will begin on January 30th, 2010 in my home the last Saturday of each month for 1 hour, 11am- noon. 

ALL ARE WELCOME. Not only those with Scleroderma.   It’s so important for people with a chronic illness to hear from many different people and to know how crucial this role is in order for them to get better.

January 4th, 2010, I will have been diagnosed with Scleroderma for 5 YEARS. 

I felt I was given a DEATH SENTENCE and was just waiting for my body to shut down each day, each month, and each year. 

I was basically just existing and not living. YES I was very determined to beat this demon and fight anyway I could but so many times; let’s just say “I was not afraid to die” and “I was ready to go home”. 

Through my journey I’ve learned that life on earth is sometimes bumpy. When you manage to get through those tough times it’s the BEST feeling in the world. (There were so many bumps in my past and I’m sure many more to come.   I felt I was on a ride at Great America sometimes).   

He walks beside me always.

If I didn’t go through MY PAIN, MY JOURNEY; than I wouldn’t know how to help others deal with what they are going through. 

I'M SO HAPPY TO BE HERE TODAY SO THAT I AM ABLE TO HELP OTHERS WHO NEED ME.

WE ALL HAVE OUR JOURNEYS IN LIFE.   FAITH, LOVE, PATIENCE AND SUPPORT will get you through it. 

I PRAY THEY WILL ONE DAY FIND A CURE FOR SCLERODERMA. 

The only way to do this is with persistence and trials. 

Everything happens for a reason.    WE ALL LEARN FROM EACH OTHER. 

I pray that the doctors will learn from MY EXPERIENCE and they will help others.

I pray that God will get me through the treatment and through the financial hardship.

GOD HAS BEEN WITH ME THROUGHOUT MY JOURNEY. He walks with me through each door. 

He has blessed me with social security disability so I can stay home and heal and get the treatment that I need. I am also going through extensive Physical and Occupational Therapy that I would not be able to handle if I was working. 

Tests, office visits, emergencies, hospital stays, TREATMENTS and travel are very expensive. Insurance will pay for some of the costs but not all.  (Co-pays, deductibles, out-of –pocket, etc…)

Going on disability was a very difficult thing to do but it was something I had to do in order to mentally and physically survive. I had to weigh my options. (Health, OR a paycheck and the opportunity to work with a great team). I miss my co-workers tremendously. I’m only getting paid ½ of what of what I use to, so I definitely miss the money which means I’m on a strict budget. 

Many have offered to help me and have been so helpful.   Thank you to all who donated to my medical fund and who shopped on the Jewel Days. 

It has helped me tremendously.   

THANK YOU TO ALL MY ANGELS……

12/23/09      Merry Christmas

I’ve been busy the last 2 weeks. 6 months follow-up appointments with all my doctors. I even went to Maryland to see my doctor at Johns Hopkins last Monday, December 15^th. He feels confident that the IVIG treatments are working for me and said all we have to do is keep monitoring my heart and lungs but for now everything is unchanged (which is great). I will have testing for the heart and lungs in March and see how the treatment is working. 

I DO FEEL CONFIDENT THAT THIS IS A GOOD TREATMENT FOR ME. I feel the results in how can move around the home which is more than what I use to be able to do. 

• I had a minor set back when I went for my treatment in November. I unfortunately had a Seizure while the nurse started to administer the drug on my first day of treatment. We believe the seizure happened due to my Neurologist lowering my seizure medication just a few days prior (because I was seizure free for 1 year) and the IVIG medication is known to possibly cause seizures. I was sent to the ER for the day and told to go back on the Seizure dose that was working for me. 

I’ve been going back and forth with my Rheumatologist about my treatment for December and she finally agreed to schedule it but only if its in-patient. 

(Recently she told me I have to wait until January because she will be out of town next week).   She seems very reluctant to go through with this treatment for me. She is stating the Risks out-weight the Benefits. I don’t feel that this is true. 

Because there are no documented cases at Northwestern for results with IVIG treatment and Scleroderma she is hesitant. They do however have studies in Boston at Johns Hopkins and “I FEEL AN IMPROVEMENT”. 

This alone should be documentation for them along with my CPK enzymes improving. (It’s all politics). I have found that hospitals, doctors, and insurance companies are all about politics. No one looks out for the patient except for the patient. 

I was VERY lucky to find a quality doctor like Dr. Boin at Johns Hopkins. 

I have a balance of 3 more treatments to go. I will prove to my Rheumatologist just how strong and determined I am to continue my battle against SCLERODERMA. If I have to, I will go to Baltimore for the treatment.

• I am also currently going to bi-weekly therapy for occupational and physical therapy at the RICC. This will help me stretch my muscles and keep them from becoming atrophied.

• I let Anne Peterson (Scleroderma Foundation Chicago Chapter contact) know that I was feeling well enough to start my support group again in January. I told her I wanted to have it from my home one day a month, on the last Saturday, and was looking to be more of a support person via phone or e-mail.   She was happy to hear it and will post it on the Web-site to start in January. 

http://www.scleroderma.org/

By Michael Hawthorne | Tribune reporter / April 19, 2009