"Hello Dr. (P), this is Mary O. We wanted to call you and let you know that I seem to be having a lot less symptoms lately. We know that our next appointment we are to discuss chemo treatments...but we wondered if we could just do one more blood test to see if my markers are in deed showing some improvement with my disease."
This was our desperate plea phone call to our specialist several week ago as we were about to face what seemed to be inevitable...months of chemo. We had been praying along with so many others that I would get better and not have to start the chemo treatments.
GOD ANSWERED PRAYERS!
Now is there anybody out there that is doing a little jig with me right now? Yep, after 7 long months...my doctors have informed me that they believe I am getting better. If all goes well I should be off all medications and showing no symptoms (total remission)...by the end of the year. I am already feeling much better and getting more strength and energy every single day.
The day we were to go to the specialist and discuss treatment options...we instead heard "Mrs. Oldenkamp...we believe you are heading towards remission. Your blood work shows remarkable improvement of your disease. So therefore, not only do we recommend no new treatments for your disease at this time...we also recommend that you start coming off all of your current medications."
Wow...we couldn't believe it. And as a matter of fact...we were a little shell shocked when we left the office. Instead of jumping up and down...we equate it to what it must feel like being a prisoner of war. For so long we were "locked up and in the prison" of my disease and finally we were being "set free". So we walked out of that room with a little apprehension of "is this for real...are we really free?" This lasted for a few weeks...but every day as I began to show improvement and from the loving nudge of our Father...our fears fell away...and now we are doing the happy dance!!!
So what is next? If I am able to continue lowering my dosages of medications and my blood work and symptoms keep improving...I should...LORD willing...be in complete remission by the end of the year. What a wonderful Christmas gift!
We do have a little bit of not so good news...but hey wanted to share the really good news first. There are a few aftermaths with the Lupus...the lining around the retina of right eye was affected. They are looking to possibly do a minor operation with a laser to sort of "weld" the lining back to normal to prevent the retina from detaching.
So getting back to the good news...this couldn't have come at a better time as this is National Lupus Awareness Month here in the UK. The tag line with Lupus is "Everyone knows someone who has it." What used to seem a quite rare and deadly disease has now become much more prevalent...but also many advances have been made to give hope that a cure is on its way!
There is currently no cure for Lupus and the main stream of medications available to treat are very harsh. RIGHT NOW there is a new medication called Benlysta that is currently being reviewed by the FDA in the States which looks to be the first medication specifically for Lupus that has been developed in over 50 years! If it is approved...it will be available the beginning of 2011!
Here is a personal photo journal of my journey with Lupus. I would not normally post such pictures of myself, but I think it is important for people to realize the devastation of the disease.
Just shortly after being diagnosed-I was having severe joint pains and could sleep for 14 hours per day!
Then came the lovely swollen lips that would appear on random occasions, along with the famous butterfly rash across my cheeks and nose...a classic sign of Lupus.
The hives were more than I could bare at times...I would literally lay in the tub soaking in baking soda and just crying as I tried not to scratch! My hair also began to fall out rapidly.
Here there was a severe adverse reaction to a medication. J and I spent so much time in and out of hospitals.
This was definitely my low point. My kidneys were starting to take a hit and we were being informed that chemo was the only option. We were also told at this point that children in the future would most likely NOT be possible if I were to go on the chemo. But we both just kept crying out to God for help!
What can YOU do to help spread the news about Lupus? Please follow the links to these two videos from St. Thomas Trust here in the UK. It will explain what Lupus is and share a story of a woman trying to start a family with the disease (something very near and dear to my heart).
PLEASE WATCH!
Here is the video telling what Lupus is:
Here is the video of a woman having lupus and wanting to start a family:
Please continue to pray over us:
- Pray that I will continue to show improvement
- Pray that my energy will increase
- Pray for the "aftermaths" that are showing up (my right eye)-that if surgery is the solution that all will go smooth
- Pray for J and I as we have been informed to attempt to "get in the best shape as possible" while I am in remission to make my body stronger if/when the next flare comes. (the average remission time is around 3-4 years).
- Pray for J and I, and OM Leaders to make decisions in regards to what I will be doing in the ministry-what capacity I will be able to maintain. (Lord willing shooting for January 2011 to start back).
We want to THANK YOU for all of your prayers, letters, emails, FB messages...it was overwhelming to know how many people have been lifting us up in prayer! You have blessed us so much!
We look forward to telling you more exciting news in the near future...Lord willing! Keep checking back here and at our website (www.voicebehindyou.com) for blog and video updates. Also, if you live in the Atlanta area and would are interested in upcoming prayer meetings please respond to this update.
We love you all deeply and are so thankful that YOU are in our lives!!!
