Thursday, March 19, 2009
An update on my health after being at The Cleveland Clinic...long post...
Where do things stand now with my health? That is the million dollar question that I have been asked and I am asking. My husband was right last week, we did not go up to Cleveland to have instant answers. Even though there was a part of me that was hoping for a miracle and we would have answers.
Here is what we do know:
1.) I do have a spinal neurological disease. I was supposedly with the best doctor in the country for MS at the Mellon Center at the Cleveland Clinic. He felt confident that I did not have MS. However, due to other tests, he did declare that I had a spinal disease. Now, this is where things get tough...He has to go digging for what disease it is. I had some very specialized test done and I had an hour long spinal MRI. Should the blood tests come back negative, he will then start testing for tumors in the spine that may not show up on a MRI or the current blood tests. It will get more specified. Whatever is in my spine is what is causing me not to be able to walk correctly, or use my arms much. It is what is causing the excruciating pain in my legs and in my back. This will take a couple of weeks to wrap up to get any answers because it is so specialized. I am in contact with a Physical Therapist so that he can recommend me to intensive Physical Therapy so that I can walk again (properly) and use my legs and arms.
(2.) My bladder does not work the way that it is supposed to. I have no sensation to go like someone else would. Your bladder should only be able to hold about 350cc's, but, since I have lost sensation and have no idea when I have to go. So, it has gotten to where i can hold 900 cc's and by the time that I do go, it is very painful and my stomach is the size of a 9 month pregnant woman because the bladder is pushing on the intestines and then on my stomach, which has made it hard to breathe. No lie. Right now, there is Physical Therapy for this. They do not want to put a pacemaker on the bladder (thank god!) until we know more about the neurological disease. I will have to cath myself 3 x a day so that my bladder can get back to regular size (if that is possible) and give my kidney a break. My kidneys were bleeding pretty bad there for a while. The doctor said if I did not rest the bladder, then I could go into Renal Failure. My bladder and kidneys remain in a painful state.
3.) See above about my bladder, and that is what has happened to my colon. That too has stopped. There is terrible pain in my right lower side. The Dr. said that he will be working with the UNC Motility Clinic to continue treatment. They do not want to remove my colon at this time. I am grateful. Duke had an appt. with a colon-rectal surgeon for removal and I am so grateful for Cleveland Clinic looking at the total picture and not taking things out until they know everything.
4.) As for the seizures, passing out, etc...I have severe hypoglycemia and they do not want to take out my pancreas (thank goodness) nor give me medicine to control the pancreas because it will interfere with my gastro problems. I will need to make sure I eat protein and the good carbs 6x a day. The doctor is doing highly specialized test, because she believes that I am malnourished and not absorbing vitamins. So, those tests will come back in about another week.
5.) Headache clinic...for the severe, severe migraines that i have been having. She gave me nerve shots in my head and neck and that seemed to help. She will be keeping in touch with me until we figure out a plan.
6.) Stomach muscles have been ripped to shreds from all of the gastro issues. They have been ripped apart from each other. So, hopefully in time and insurance... they can put them back together.
I had 40 vials of blood taken and mostly specialized. That is why it will be another week or two until all docs come together to formulate a plan for my total recovery. Most of the doctors have attributed this to the spinal disease that I found out I have. I feel comfortable that the doctor will find out exactly which disease because of his expertise.
I had numerous MRI's, CT scans, some really uncomfortable procedures, a trip to the ER, because I couldn't handle the bowel prep they gave me and it caused me to have these 'episodes', basically like blacking out and the pain was horrific. My heart rate got out of control, so the test could not be done. I have a problem with a high heart rate and low blood pressure, and sugar. Those combination's make me faint...
The pain is the worst that I have had to deal with. That, and the inability to walk properly. I cannot drive, and haven't been able to since before Christmas. I have a hard time reading and writing..which is my lifeline. Right now, I am being cared for by my parents and so are my children. This part is devastating to me, because I am so independent and losing that has been emotionally painful. And the fact that I cannot care for myself on my own nor that of my children. They are with me, but, my parents and brother and sister have helped me care for our babies.
To add insult to injury, I have an abscessed tooth that has gone into my nerves and sinuses, which means root canal. So, the pain in my face is horrible.
Blake has been wonderful, amazing and has been the best nurse. He has had to carry me several times, when I could not literally walk myself, he has had to dress me and watched me go through some rather difficult exams. He has been my rock.
I realize that this is more clinical than emotional. But, I wanted to let you know what happened. We hope to have some answers in the next few weeks and formulate a plan.
We ask for your prayers for our children who have held up remarkably throughout all of this. I know it is hard for them to watch me not be the mommy that they know and they see me cry through the pain, because I do not have pain medicine. The doctors are concerned about meds until they find out where the disease is coming from. So, most days...I have learned to shut my body down and ignore the pain. The other days, I do cry...because the pain is so great. So, I ask for your prayers in handling the pain. Prayers for the doctors to find a solution. I ask for prayers for Blake and giving him the strength to handle all of this....his job, his traveling, everything that he does at home, caring for all of us. The magnitude of it all for him must be overwhelming. I pray for him. And I pray for my family....they have stopped their lives to take care of me and our children. I am forever indebted to so many.
We are coming up on 18 months of me being ill, and progressively getting worse. I know God has a plan. I do ask for your prayers that He will reveal it soon. I met some amazing people at the Cleveland Clinic who have been through things that I cannot even begin to comprehend. They inspired me and still do. I feel blessed, I have my family, friends, a great life, wonderful children and husband. I really feel my calling is to write and share with others. I am gradually able to concentrate more and more each day. I am grateful for that and blessed with my life.
I will write more later. This is a super long post. Sorry for your eye balls hurting!! God bless and thank you for your love and support!!!