This is so hard to write about! Hence the length of time between Part 1 and Part 2. I really don't like writing about it for several reasons, one of which is it is hard to keep track of everything that has happened!! But like I said in the last post, I think it is good for me to get it out here since it is a big part of our lives. I do think it is somewhat therapeutic to write about it as well.
So, last time we left off at the spine surgery where they built the internal neck brace. I realized I forgot a few things that happened before this surgery, so I want to mention those first. After the second fusion attempt, I couldn't swallow without inhaling liquid/food, choking, etc. After x-rays and swallow studies, it was discovered that in going through the front of the neck to get to the spine, my esophagus was damaged. The flap doesn't seal tightly anymore and they couldn't fix it. So, I had to have 'swallow therapy'. While I was being x-rayed, I would swallow the dye/solution that shows up on the films. I swallowed many different ways until things worked right. Then I was on my own to get used to swallowing that way-it is my normal swallowing forever, more of a gulp with a lot of air to it. I'm usually not aware of it, it is second nature now.
The other thing I forgot about was continuing to have problems with sores and things not healing well, excessive bleeding, etc. I looked online and after much searching, found something that I thought fit my symptoms. I asked my PCP at the time, who had never heard of it, but ordered preliminary tests. Those came back positive for a form of hemophilia called von Willebrand's disease. So then I was sent to an oncologist/hematologist for further tests, and it was all confirmed. Basically what we learned is I am missing factor 8 in my blood, which means I do clot eventually, but it could take a long time if it happens at all. I had a few other factor problems that I don't remember now, obviously they weren't as big of a deal. This blood disorder meant I needed the factor replaced for major bleeding things like surgery, and any fall or big blow to the body could be causing internal bleeding. We also stopped my periods artificially, since they were a major problem, lasting too long and being too heavy. Anemia is very common with this disorder. Since I was diagnosed, just last year my daughter Alyssa (14) was diagnosed as well. When you have this disorder, you have a 50% chance of passing along hemophilia to your children. Poor Aly was the lucky one!
OK, back to the story. The spine surgery was done, everything was healing properly, and I felt HORRIBLE. Worse than before surgery. My entire body ached, my joints were stiff, and I was extremely fatigued. Everyone (doctors included) kept saying to give myself time to get over the surgery, but I knew something was not right. I remember in November, around Thanksgiving, 4 months after surgery, I thought I was close to dying. I had to use a cane a lot, and felt like crawling on the floor instead of dealing with the pain of trying to walk. Finally, in January 2007 I was referred to a rheumatologist, who ran a lot of tests. I remember getting the results the day before Valentine's day. I had a multi-organ autoimmune disease, and my numbers were so high they were off the charts. There are hundreds of autoimmune diseases such as rheumatoid arthritis for one, which are organ specific. In my case, my immune system doesn't protect me as it should, and instead attacks my own cells/organs/tissue, basically any part of my body is fair game. I don't have a specific name for my disease at this point except that it is a connective tissue disease and multi-organ autoimmune disease. There is no cure. Usually it attacks joints, muscles in the early stages and then organs later (often kidneys first, then liver but it could be anything). I was told that if I were to get sick it can get worse, being in the sun can make it worse, as can stress. When I was told it was terminal with no cure, I was numb. It just couldn't be. I remember going to Walgreen's for Valentine's candy for my kids, and just standing there in a daze, thinking this will probably be my last Valentine's day. Then the tears started once I got into the car.
A lot has changed since that day-obviously, it was not my last Valentine's day (I've had 2!), and I have learned a lot, prayed a lot, been prayed for a lot, and I'm on medication to help ease the symptoms. I've learned 'terminal' is relative. With this disease, it could be 20 years from now, or yes it could be next month if something were to happen and my organs shut down quickly. I've learned to relax about it, and take each day as it comes, as a gift. The only problem with that is this disease makes you feel like crap! I want to be loving life, but I'm fatigued and everything hurts. What did help me a lot was an old anti-malaria medicine, which takes the edge off of the symptoms. The side effect, though is that it damages the cornea. So, my eyes are checked very carefully so I will be pulled off the medicine quickly if changes are noted. I also have osteoarthritis in many joints now, so its hard to tell which disease my pains are from sometimes! I go to several doctors, and my organ function is checked every 3 months if things are going fairly well. So far, the disease has stuck to my joints/muscles, with a slight problem with my kidneys last Fall, which they are watching carefully. Odd things happen, like a few months ago I woke up with a torn rotator cuff! After several weeks in pain and not being able to use my right arm (just before/during Christmas!), the pastors and elders of our church got together and prayed for me. The next day, my arm felt significantly better, and healed completely soon after! We had been afraid I would need surgical repair. This was a big relief and praise on this rollercoaster of ups and downs, and a reminder of God's healing power.
When I was first diagnosed, I was told that there is remission, however the medical profession has no idea how it happens. But, the doctor told me that sometimes they can do chemotherapy or a bone marrow transplant to 'trick' the body into remission. I held onto hope for one of these treatments, and finally was told several months ago that I was not a candidate for them because of the way my immune system works (or doesn't work)-he came right out and said he was absolutely sure I would die from the treatment.
So, now I am on a lot of medication. I am on disability, which helps replace the income I lost, but is pretty much eaten up by medical/prescription copays. I am thankful for it though. I could sleep 23 hours of the day easily, but I don't. I do easy household chores and easy meals on good days. I try to smile and have fun, even though I'm tired and in pain. Some days are better than others. During cold and flu season, I have to avoid people so I am home a lot. I long for a 'normal' relationship with my family-being active physically together, but we try to find OUR 'normal'. I try to be thankful each day, and not get down about missing out on activities outside of the home. I am very thankful for my awesome husband Jeff, who has been through so much with me during our 20 years of marriage. Most days, after dealing with the most horrendous crimes against children, he walks through the door and is willing to help do whatever I need. Plus he has a second job just so we can get by. My kids are so understanding and caring, and I love them so much. My oldest two, Nick and Alyssa, still are homeschooled, but they are doing a virtual school and only need me to supervise. My youngest, Chad, is in kindergarten half days. If my health improves, I would like to homeschool him eventually. Our families are all far away, so we have been without extended family support through all of this, but we've had the support of wonderful friends and church family. I am blessed. I know God has a reason for my illness, and I know He can heal me if and when He chooses. I appreciate your prayers for me and my family, and I will try and update about my health when necessary!
Tuesday, March 31, 2009
Wednesday, March 25, 2009
My Illness(es..es..es....)
I figure it's about time to go into this subject, since I touch on it here and there in posts and in my profile. I might have to do this in a couple posts even. Here goes-as a child, I was fairly healthy. I was adopted, a closed adoption as they all were in the 60s I think! So, we had no access to medical records, conditions, anything. When I was a pre-teen, it was discovered I had scoliosis (curvature of the spine). Mine was up high between the shoulder blades, and was already too advanced for a brace to be helpful. Usually, (back then at least) they were trying to just stop the curve from worsening, not trying to correct anything. The doctor we saw suggested surgery to put in a steel rod, and I would be in a body cast for several months (9 I seem to remember). My parents looked into alternative treatments (quite surprising now that I think of it!!), and found an experimental study going on using something called a Scolitron. For about 3 years I wore this machine at night for 8 hours, with electrodes at the top and bottom of the curve, and for 8 seconds it would electrically shock my spine completely straight (I know, crazy and painful) and then let it rest for 8 seconds. It took a long while for me to get the shock up high enough to straighten for those 8 seconds, I had to increase the power a tiny bit each night, as much as I could bear. I finally got used to it, and actually at the end of the 3 years, had to wean off of it!! It did stop my curve from worsening, and they x-rayed my wrist each month to see when I stopped growing, so I could be done with the treatment. I finished growing in 8th grade, and it was really weird to know that fact!!
The reason I'm explaining all of this (beside the weirdness of it), is we really do not know how much of it had/has an impact on my spine now. Maybe I should have had the surgery. All we know now, is that the experimental treatment was not approved by the FDA, in fact was just about laughed out. Most spine specialists now have never even heard of such a thing and are 'shocked' (ha!) by it. All I know is my parents did what they thought was best for me, and I love them for that. I can't imagine putting my child through the surgery they were describing either, if there were other options. Plus, my curve did stop curving! Would it have anyway on its own?? Maybe. I ended up with the curve crushing my organs and ribs a few centimeters permanently, which is normal. Does all of this contribute to my problems now? Maybe. Probably. It depends which doctor I am seeing. Frustrating. I do know the Greatest Doctor knows all the answers to my questions, and He will answer them for me in Heaven. Until then, back to the story.....
In my 20s, things were pretty much OK, I had my two biological children. I know now that things weren't fine and that is why I had trouble with my last pregnancy and other little things. I couldn't have any other kids because my body didn't want to keep them inside me. Then about 10 years ago, my bladder fell. Now, this happens to women who have had lots and lots of babies, huge babies, etc. Neither had happened to me. Couldn't figure that one out (but we know now!), so I had the bladder surgically put back up in a little sling made out of my ligaments and all was back to normal.
Around 2001, my upper spine/neck was really hurting. It always hurt by the end of the day, and I was told this was due to the scoliosis. But this was much worse. I was working at home as a medical transcriptionist full time, so lots of computer work. This is when I found out that I have degenerative disc disease. My discs had not herniated, they had dissolved/disappeared. I needed surgery to have two spinal levels(c56, 67) fused together with artificial disc material placed in them and plates and screws. I had to have a really horrible test done in the OR while awake, that I still have nightmares about to this day. They couldn't give any pain meds because they needed a true response-yuck. So, I had the surgery in March. They went in through the front of the neck (a surprise to me), and because my veins did not cooperate I had to have a port in my chest. The recovery from that surgery was awful. I was in a hard collar for 2 months, which was so uncomfortable. Then a soft one for a few months after that. The bad news was that the pain did not go away. We kept giving it time, giving it time, but time didn't work. Finally, after a move, a new neurosurgeon (we switched from orthopedic surgeon to neurosurgeon-good move) did an MRI and said the spine never fused to the hardware. So, in 2003 I had the surgery redone, this time with a new 'miracle-grow' cell producer liquid dripped into donor bone. A plastic surgeon came in and took out my old scar, which had not healed well (another clue for later), and tried to make a better one. Also to try to encourage fusing, I wore a bone growth stimulator around my neck during the day for about six months. During this surgery was when the broken screw was noticed and could not be retrieved, hence the name of my blog. There was some question of a bleeding problem during this surgery, and a blood clotting medication was used during surgery, but at a consultation with a hematologist afterward he said there was no problem.
We moved to Utah, and I was feeling better than after the first surgery, but still in a lot of pain. I saw a neurosurgeon here, and she showed me how the second fusion did not take either! On top of that, now there were problems compounded-the vertebrae underneath the fusions had shifted, causing a 'step-down' to my spine (I still have that), bone spurs, degeneration at a level immediately above and immediately below the old fusions, and at certain movements of my head, the edges of vertebrae hitting each other. So, not good. While waiting for surgery, I had a few outpatient spinal blocks done in my neck and other fun things I can't even remember to try to ease the pain. I wore a brace until surgery, which was July 2006. Because I had been entered twice in the front of the neck, she had to go in through the back, which is harder surgically to work with. She decided to add in one of the new degenerated levels (c7-T1), but to leave the other one (c45) for later (something to look forward to-yea!). She put in mass plates at the facet joints (I think I have that right), and basically made an interior neck brace so that the unsafe movement that was happening couldn't happen anymore. Also, this interior neck brace would not count on my body to fuse, it wouldn't need to as this hardware would hold everything together. The drawbacks to having this major of hardware inserted was that she said I would forever have pain, though hopefully not as bad as it was before. Also, I could never do any athletic activities-walking was about all that was safe. No lifting over about 10 lbs. Lots of restrictions, but it seemed worth it. The pain is about the same, but its hard to tell what is arthritis (which I have now), DDD, scoliosis, or autoimmune (below).
After this surgery, my spine healed well, but my body fell apart, and we now know that the surgery triggered my dormant autoimmune disease (which we didn't know I had) to make a MAJOR appearance. I think that will be the next post, as this is getting TOO LONG. Next post-autoimmune disease, and all the fun you can have with that!
The reason I'm explaining all of this (beside the weirdness of it), is we really do not know how much of it had/has an impact on my spine now. Maybe I should have had the surgery. All we know now, is that the experimental treatment was not approved by the FDA, in fact was just about laughed out. Most spine specialists now have never even heard of such a thing and are 'shocked' (ha!) by it. All I know is my parents did what they thought was best for me, and I love them for that. I can't imagine putting my child through the surgery they were describing either, if there were other options. Plus, my curve did stop curving! Would it have anyway on its own?? Maybe. I ended up with the curve crushing my organs and ribs a few centimeters permanently, which is normal. Does all of this contribute to my problems now? Maybe. Probably. It depends which doctor I am seeing. Frustrating. I do know the Greatest Doctor knows all the answers to my questions, and He will answer them for me in Heaven. Until then, back to the story.....
In my 20s, things were pretty much OK, I had my two biological children. I know now that things weren't fine and that is why I had trouble with my last pregnancy and other little things. I couldn't have any other kids because my body didn't want to keep them inside me. Then about 10 years ago, my bladder fell. Now, this happens to women who have had lots and lots of babies, huge babies, etc. Neither had happened to me. Couldn't figure that one out (but we know now!), so I had the bladder surgically put back up in a little sling made out of my ligaments and all was back to normal.
Around 2001, my upper spine/neck was really hurting. It always hurt by the end of the day, and I was told this was due to the scoliosis. But this was much worse. I was working at home as a medical transcriptionist full time, so lots of computer work. This is when I found out that I have degenerative disc disease. My discs had not herniated, they had dissolved/disappeared. I needed surgery to have two spinal levels(c56, 67) fused together with artificial disc material placed in them and plates and screws. I had to have a really horrible test done in the OR while awake, that I still have nightmares about to this day. They couldn't give any pain meds because they needed a true response-yuck. So, I had the surgery in March. They went in through the front of the neck (a surprise to me), and because my veins did not cooperate I had to have a port in my chest. The recovery from that surgery was awful. I was in a hard collar for 2 months, which was so uncomfortable. Then a soft one for a few months after that. The bad news was that the pain did not go away. We kept giving it time, giving it time, but time didn't work. Finally, after a move, a new neurosurgeon (we switched from orthopedic surgeon to neurosurgeon-good move) did an MRI and said the spine never fused to the hardware. So, in 2003 I had the surgery redone, this time with a new 'miracle-grow' cell producer liquid dripped into donor bone. A plastic surgeon came in and took out my old scar, which had not healed well (another clue for later), and tried to make a better one. Also to try to encourage fusing, I wore a bone growth stimulator around my neck during the day for about six months. During this surgery was when the broken screw was noticed and could not be retrieved, hence the name of my blog. There was some question of a bleeding problem during this surgery, and a blood clotting medication was used during surgery, but at a consultation with a hematologist afterward he said there was no problem.
We moved to Utah, and I was feeling better than after the first surgery, but still in a lot of pain. I saw a neurosurgeon here, and she showed me how the second fusion did not take either! On top of that, now there were problems compounded-the vertebrae underneath the fusions had shifted, causing a 'step-down' to my spine (I still have that), bone spurs, degeneration at a level immediately above and immediately below the old fusions, and at certain movements of my head, the edges of vertebrae hitting each other. So, not good. While waiting for surgery, I had a few outpatient spinal blocks done in my neck and other fun things I can't even remember to try to ease the pain. I wore a brace until surgery, which was July 2006. Because I had been entered twice in the front of the neck, she had to go in through the back, which is harder surgically to work with. She decided to add in one of the new degenerated levels (c7-T1), but to leave the other one (c45) for later (something to look forward to-yea!). She put in mass plates at the facet joints (I think I have that right), and basically made an interior neck brace so that the unsafe movement that was happening couldn't happen anymore. Also, this interior neck brace would not count on my body to fuse, it wouldn't need to as this hardware would hold everything together. The drawbacks to having this major of hardware inserted was that she said I would forever have pain, though hopefully not as bad as it was before. Also, I could never do any athletic activities-walking was about all that was safe. No lifting over about 10 lbs. Lots of restrictions, but it seemed worth it. The pain is about the same, but its hard to tell what is arthritis (which I have now), DDD, scoliosis, or autoimmune (below).
After this surgery, my spine healed well, but my body fell apart, and we now know that the surgery triggered my dormant autoimmune disease (which we didn't know I had) to make a MAJOR appearance. I think that will be the next post, as this is getting TOO LONG. Next post-autoimmune disease, and all the fun you can have with that!
Tuesday, March 17, 2009
Riding on two wheels!
click on image to see largerThis past Saturday, March 14th, we had beautiful pre-Spring weather. I left to go to the store and was gone for only about one hour. While I was gone, Chad asked Jeff to fix his bike because the training wheels were falling off. The training wheels were unrepairable, so Jeff decided to just take them off. Chad asked to try the bike without the training wheels and Jeff figured they'd give it a try, but never thought he'd catch on so quickly, especially knowing I wouldn't want to miss this big event! To his surprise, Chad got on and hardly needed any help. By the time I got home, he was riding fast, turning, looking like he had been riding on two wheels for a while!! He is growing up so fast, I can't even be away for an hour! I'm sure Nick will be wanting to teach him how to unicycle next (yikes)!
Wednesday, March 11, 2009
Our Littlest Shoveler
A few weeks back, we had a snowstorm, and Chad asked if he could shovel. I said sure, thinking he would use up some of his endless supply of energy pushing the snow around. I always keep the front blinds open when he is out front playing so I can keep an eye on him, but I really didn't watch WHAT he was doing. After about half an hour he came in and told me he was done, and would I look outside at what a good job he did. I went to look, expecting to not really see anything, but was I shocked! This six-year-old can shovel snow!! He had shoveled the sidewalks, walkway to the house, and driveway, and done a GOOD job! Yesterday, when it snowed, he asked if he could shovel again. Remembering the fuss we all made last time, he asked if he could earn a dollar if he did a good job so I said yes. This time I watched him shovel. He puts his entire 50 lbs. of body weight against the adult snow shovel and pushes it until it is full of snow, then tosses it over to the side (he is quite strong for his age, very athletic). His rows/lines are so straight, it's amazing! Chad doesn't even take drink breaks because he loves to eat snow (ack!), though we have tried to stop him for years (yes, we've warned him of various colors of snow). So when he gets thirsty he just bends down and gets a handful of snow to eat! Back to yesterday, he once again did an awesome job! I mean, this kid does a better job than teenagers (we won't name names!). It's nice when he's excited to do it, too!
Tuesday, March 3, 2009
Weekend activities
Last weekend was different for our family! Our oldest two kids, Nick (17) and Alyssa (14), have been raising money for a few weeks for a nationwide event called '30-hour famine' through World Vision. Our family has sponsored a little girl from Bangladesh, Shantona, for at least 6 years through World Vision, and it has been such a wonderful experience. The kids give a portion of their allowance each month to contribute to her care. Anyway, World Vision was also sponsoring this program. Teens in church youth groups around the country got donations (from coins on up) to feed hungry children, and then the kids fasted for 30 hours together. In warmer areas, they actually tried living in cardboard boxes as well. Since Alyssa has hypoglycemia (low blood sugar), we were happy our church decided on a juice fast. The kids did a lot of service projects during their time together as well. Our church's youth group raised over $2000!!
So, on Saturday, we only had our littlest one, Chad (6). This hardly ever happens, but sadly we do notice it happening more and more these days as the teens spread their wings. We ended up going to an event we had signed up for previously with the Utah Hemophilia Association. Alyssa and I both have a form of hemophilia, and this was an education day, plus you got free admission to the dinosaur museum at Thanksgiving Point. We had never been in the dino museum before. Chad had a blast doing all the hemophilia activities for kids. He was a pro at measuring fake 'factor' into a syringe, gave an infusion into a fake vein, and flushed a doll's port. Maybe he'll be a doctor when he grows up! After lunch with the group, we started walking over to the museum, and encountered a huge black Labradoodle (very cute and playful!). The museum was great! It was good for adults and kids. Chad had fun with a sand and water play area for kids, complete with plastic trees and dinos. It was fun to have time alone with him as the focus.
So, on Saturday, we only had our littlest one, Chad (6). This hardly ever happens, but sadly we do notice it happening more and more these days as the teens spread their wings. We ended up going to an event we had signed up for previously with the Utah Hemophilia Association. Alyssa and I both have a form of hemophilia, and this was an education day, plus you got free admission to the dinosaur museum at Thanksgiving Point. We had never been in the dino museum before. Chad had a blast doing all the hemophilia activities for kids. He was a pro at measuring fake 'factor' into a syringe, gave an infusion into a fake vein, and flushed a doll's port. Maybe he'll be a doctor when he grows up! After lunch with the group, we started walking over to the museum, and encountered a huge black Labradoodle (very cute and playful!). The museum was great! It was good for adults and kids. Chad had fun with a sand and water play area for kids, complete with plastic trees and dinos. It was fun to have time alone with him as the focus.
Subscribe to:
Posts (Atom)