If you are a part of my life, no doubt you know that I sing and I love to sing. For the past three and a half years, I have been part of the worship team at my church. For the past two years I have been leading the worship team for Saturday nights. What I thought this meant is choosing songs and generally just keeping everyone on track. What it really meant was learning how to run a sound board with no previous experience, understanding lighting and trying to configure it to make everyone happy (impossible), dealing with people constantly showing up late (therefore making practice run late), trying to work with several different people's scheduled absences and still have a full band, rarely getting to take a night off, constantly trying to keep the music sets from becoming stale, and never feeling like I got to be able to worship because I was so busy trying to make it the "right" atmosphere for the congregation to worship.
People often ask me why I didn't enter into music professionally or become a voice teacher or something like that. I briefly thought about being a music education teacher while I was in college but realized that if I tried to teach people (children especially) something that comes so easily and naturally to me, I would end up hating it. I don't know if that is what is happening now, but it sure feels like it. I still love to sing, but no longer feel the desire to ever perform, maybe ever again. It saddens me, but honestly, I love to sing because I enjoy music, not because I enjoy the response of people. I am much happier singing to the radio in my truck than I have ever been performing in front of people. For some reason, it seems that people think that I (and I know other musicians have experienced this too) should offer up my talents just for the heck of it. Well, it is time consuming, stressful, and requires a lot of logistics to figure out. If your neighbor was a dentist, would you expect him to fill your cavities for free? I hope not. But, people expect that I can and will offer up my voice to whatever it is that they want, a wedding, funeral, special service, whatever without any type of compensation.
Okay, so I sound really bitter. I'm not really, just frustrated that no one understands. And believe me, it's not about the money or lack thereof. Though honestly, during the months that my husband was laid off and now paying into COBRA for insurance that I cannot go without, it would have been extremely helpful. But I never had time to get anything done that I wanted to get done. I missed a lot of family and friend events, Christmases, birthdays, weddings (lots of weddings) because I had committed to something and I take my commitments seriously.
My multiple sclerosis has also been a factor of my decision. I was diagnosed in 2011 and have had a lot of ups and downs with it. For the last 6-9 months, I have felt exhausted, beyond exhausted and could barely keep my head up with the stress of working a full time (mentally exhausting) job, the band, and all of my other commitments. I had surgery in December to have my gallbladder removed. That helped some with the constant illness related to my digestion. However, the exhaustion continued. Finally last month, my doctor ordered an MRI and blood work. My blood work came back fine but my MRI showed three active lesions on my brain. I completed two days of a steroid infusion and 21 days of a steroid taper pack. I finally feel like me again though I am still dealing with the after effects of the steroids (weight gain, dry scaly skin etc.).
So right now, I am enjoying my freedom, getting things done around my house, spending time with my husband and family, and all around enjoying life. I have been able to sleep and make it to work on time. I have been able to attend family functions on the weekends. I don't know when or if I will return to singing, but I don't miss it yet. I don't know when I am going to start missing it. Maybe never. Just have to see what the future holds and how God guides me regarding this.
Thursday, April 25, 2013
Wednesday, February 27, 2013
Snowing, snowing, snowing....
It has been snowing on and off since last Thursday (almost a week now, wow!). I love it, I think it is so pretty. The roads aren't horrible but they aren't much fun either. It's hard to believe that it is almost March already. I swear, it feels like Christmas was yesterday and it will be here tomorrow again! Time is really moving. To update on the things doing on currently:
My beautiful niece was born in January on the 19th early in the morning. She is very precious and is growing and doing well. My nephew is doing well and enjoying his little sister.
Last Sunday was the one year anniversary of losing my Grandpa Dale. It's still a hard loss but gets easier with time. I wanted to go out to his grave and put some flowers on it but the snow is so bad right now that it will have to wait until it gets nicer out.
I have been feeling much better since getting my gall bladder out. It has helped a lot with not getting sick after I eat. My digestive system still sucks pretty bad but is better than it has been in the past at least. My MS appears to be stable at this point so that is good.
Other than that, I have junk going on in my brain that I am not ready to "put on paper" yet. The basic theme is that I feel like a dancing monkey people feel like they can throw a quarter in and get me to do whatever they want. Somedays I wish I couldn't sing, sure would take a load of crap off my plate. *sigh*
My beautiful niece was born in January on the 19th early in the morning. She is very precious and is growing and doing well. My nephew is doing well and enjoying his little sister.
Last Sunday was the one year anniversary of losing my Grandpa Dale. It's still a hard loss but gets easier with time. I wanted to go out to his grave and put some flowers on it but the snow is so bad right now that it will have to wait until it gets nicer out.
I have been feeling much better since getting my gall bladder out. It has helped a lot with not getting sick after I eat. My digestive system still sucks pretty bad but is better than it has been in the past at least. My MS appears to be stable at this point so that is good.
Other than that, I have junk going on in my brain that I am not ready to "put on paper" yet. The basic theme is that I feel like a dancing monkey people feel like they can throw a quarter in and get me to do whatever they want. Somedays I wish I couldn't sing, sure would take a load of crap off my plate. *sigh*
Wednesday, January 9, 2013
A Year in the Life of Me!
January - 2012 started with illness that took a long time to finally heal. After doing at least two different rounds of antibiotics, they finally did a throat culture and determined that I had thrush. Once it was finally treated correctly, it went away quickly.
February - My grandpa Dale died on February 24th after dealing with congestive heart failure for many years. He contracted pneumonia and his body was just not able to fight it off. I went to see him on his last day and though he was not awake at any point, I hope he heard me tell him that I loved him and that it would be okay if he needed to go. I miss him terribly, to this day. I officiated the funeral because I could not deal with the idea of some stranger trying to eulogize a man he/she had never met. It was not an easy task but so incredibly rewarding to honor him this way.
March - I changed my MS medication to Copaxone instead of Rebif. This meant taking a daily shot instead of a shot three times a week. However, the difference in fatigue and general feelings of malaise improved dramatically. I continued to experience health concerns including frequent digestive problems that I suspected were gallbladder related. It's easy for the doc to just chalk it up to the MS though so it's hard to tell what is actually going on.
April - I went to see the reproductive endocrinologist in Iowa City this month. I asked him for a better fix to the PCOS and he actually offered to do a complete hysterectomy. I have considered this in the past but shied away due to the major surgery aspect. Additionally, I have enough menopausal symptoms already, I didn't really want more. It is something I have continued to think about and pray about.
May - Steve's grandmother passed away this month. He dealt well with this, though she was last of his biological grandparents who was still living. Her husband is doing well though and we hope that Grandpa Jim will be around for many years. Millie was buried in the National Cemetery. This month continued with back pain and digestive issues.
June - Due to the continuing health issues, I had to have a lumbar MRI and x-ray to determine if there was an MS reason for the problems that I had been experiencing. Fortunately and unfortunately nothing was found. This was good for my MS but it was later determined that a 5mm kidney stone was the cause of the pain and problems. I ended up suffering from the stone and resulting infections for about three weeks. I went to the emergency room at least four times during this period because of the pain and other effects of the stone. I don't know if I ever passed it or if it is in my bladder just waiting to cause some more pain.
July - I turned 30 years old in July and while this was a little nerve racking, it was compounded by the ongoing health concerns that just wouldn't give up. I had a great birthday however and got to see fireworks on my birthday in Carthage with Steve and Eric. My step-sister also got married this month and the wedding and reception were both beautiful and fun.
August - I fell down our stairs at the beginning of the month and broke the big toe on my left foot. It is the first bone I have ever broken. But after falling down 13 steps, I figured that only breaking a toe was pretty good business. It hurt very bad and I ended up having to wear a boot to stabilize it for six weeks. Also this month, my grandpa Jack died. It seems like he had been gone many years due to the dementia that changed his personality so much. But he was always loving and funny, even to the end. He will be very missed. He was buried in National Cemetery as well and actually right next to Steve's grandmother.
September - This was the month of our 5th Anniversary and FINALLY our honeymoon! We spent three nights and four days in Eureka Springs, Arkansas at a bed and breakfast. We got to see a large cat sanctuary, a drive-through zoo, a cave, lots of shopping, and have lots of fun. It was a great time and both of use really enjoyed the time we spent together during the trip. I did still have to have the boot on and the constant rain made it difficult to walk at times. But it ended up being a great trip to remember and a great way to celebrate our anniversary.
October - We found out when we got back from our vacation that Steve would be laid off from his job. So October was a month of stressing out and worrying about Christmas coming and all the money that we would not have to pay bills and buy Christmas presents. I also continued to have digestive problems and was missing, it seemed, at least one day every pay period of work.
November - This was the month of medical tests. I had a follow-up MRI of my brain and a base-line MRI of my cervical and thoracic spinal cord. No new lesions were found on my brain and one active lesion was found on the cervical area of my spinal cord. No treatments were completed due to my upcoming surgery. The surgery was scheduled after the doctor finally ordered a gallbladder functioning test and it was realized that my gallbladder was only functioning at 7% and was causing all the digestive issues that I had been having for THREE years. This was also the last month that my husband was employed and he was laid off right before Thanksgiving, though given a very nice severance package.
December - I had my gallbladder out on December 7th, a Tuesday. The following day I ran a fever of about 101F all day until it finally went away. Then the next day, I continually threw up and had to go back to a clear liquid diet. Then the next day my poor digestive system revolted. It was not fun. But after dealing with all that, getting the staples out and healing up, I am feeling better now than I have in a long long time. I still have to be careful of some foods but overall, I am much better. At the end of the month, my husband interview and was offered a new job with a new company. God has certainly provided for us!
So, a pretty rough and tough year but ended on a high note with me feeling better and Steve getting a new job which he seems to like.
February - My grandpa Dale died on February 24th after dealing with congestive heart failure for many years. He contracted pneumonia and his body was just not able to fight it off. I went to see him on his last day and though he was not awake at any point, I hope he heard me tell him that I loved him and that it would be okay if he needed to go. I miss him terribly, to this day. I officiated the funeral because I could not deal with the idea of some stranger trying to eulogize a man he/she had never met. It was not an easy task but so incredibly rewarding to honor him this way.
March - I changed my MS medication to Copaxone instead of Rebif. This meant taking a daily shot instead of a shot three times a week. However, the difference in fatigue and general feelings of malaise improved dramatically. I continued to experience health concerns including frequent digestive problems that I suspected were gallbladder related. It's easy for the doc to just chalk it up to the MS though so it's hard to tell what is actually going on.
April - I went to see the reproductive endocrinologist in Iowa City this month. I asked him for a better fix to the PCOS and he actually offered to do a complete hysterectomy. I have considered this in the past but shied away due to the major surgery aspect. Additionally, I have enough menopausal symptoms already, I didn't really want more. It is something I have continued to think about and pray about.
May - Steve's grandmother passed away this month. He dealt well with this, though she was last of his biological grandparents who was still living. Her husband is doing well though and we hope that Grandpa Jim will be around for many years. Millie was buried in the National Cemetery. This month continued with back pain and digestive issues.
June - Due to the continuing health issues, I had to have a lumbar MRI and x-ray to determine if there was an MS reason for the problems that I had been experiencing. Fortunately and unfortunately nothing was found. This was good for my MS but it was later determined that a 5mm kidney stone was the cause of the pain and problems. I ended up suffering from the stone and resulting infections for about three weeks. I went to the emergency room at least four times during this period because of the pain and other effects of the stone. I don't know if I ever passed it or if it is in my bladder just waiting to cause some more pain.
July - I turned 30 years old in July and while this was a little nerve racking, it was compounded by the ongoing health concerns that just wouldn't give up. I had a great birthday however and got to see fireworks on my birthday in Carthage with Steve and Eric. My step-sister also got married this month and the wedding and reception were both beautiful and fun.
August - I fell down our stairs at the beginning of the month and broke the big toe on my left foot. It is the first bone I have ever broken. But after falling down 13 steps, I figured that only breaking a toe was pretty good business. It hurt very bad and I ended up having to wear a boot to stabilize it for six weeks. Also this month, my grandpa Jack died. It seems like he had been gone many years due to the dementia that changed his personality so much. But he was always loving and funny, even to the end. He will be very missed. He was buried in National Cemetery as well and actually right next to Steve's grandmother.
September - This was the month of our 5th Anniversary and FINALLY our honeymoon! We spent three nights and four days in Eureka Springs, Arkansas at a bed and breakfast. We got to see a large cat sanctuary, a drive-through zoo, a cave, lots of shopping, and have lots of fun. It was a great time and both of use really enjoyed the time we spent together during the trip. I did still have to have the boot on and the constant rain made it difficult to walk at times. But it ended up being a great trip to remember and a great way to celebrate our anniversary.
October - We found out when we got back from our vacation that Steve would be laid off from his job. So October was a month of stressing out and worrying about Christmas coming and all the money that we would not have to pay bills and buy Christmas presents. I also continued to have digestive problems and was missing, it seemed, at least one day every pay period of work.
November - This was the month of medical tests. I had a follow-up MRI of my brain and a base-line MRI of my cervical and thoracic spinal cord. No new lesions were found on my brain and one active lesion was found on the cervical area of my spinal cord. No treatments were completed due to my upcoming surgery. The surgery was scheduled after the doctor finally ordered a gallbladder functioning test and it was realized that my gallbladder was only functioning at 7% and was causing all the digestive issues that I had been having for THREE years. This was also the last month that my husband was employed and he was laid off right before Thanksgiving, though given a very nice severance package.
December - I had my gallbladder out on December 7th, a Tuesday. The following day I ran a fever of about 101F all day until it finally went away. Then the next day, I continually threw up and had to go back to a clear liquid diet. Then the next day my poor digestive system revolted. It was not fun. But after dealing with all that, getting the staples out and healing up, I am feeling better now than I have in a long long time. I still have to be careful of some foods but overall, I am much better. At the end of the month, my husband interview and was offered a new job with a new company. God has certainly provided for us!
So, a pretty rough and tough year but ended on a high note with me feeling better and Steve getting a new job which he seems to like.
Friday, November 16, 2012
Running out of room in my head
Stress doesn't even seem to be a big enough word for what I have been feeling lately. Terror might be closer...
Today was my husband's last day of work at what was his current job. The company did a massive layoff and he was affected by it. He was the carrier of our insurance so who knows how that is going to work. We are going to try to pay into Cobra but of course that is really expensive.
I will be having my gallbladder out in a little over a week. I am hopeful that this will help with a lot of the digestive issues that I have been experiencing lately. At the very least I hope it helps with the pain. I will be off for almost a week following the surgery. It will be nice to get some rest at least.
I had a follow-up MRI last Friday and got the results yesterday. The brain area was good with no new lesions and no active lesions. I have an active lesion on my spinal cord around the C4 area. No lesions in my thorasic area but I do have some arthritis and some misaligned vertebrae at T6-T7. That explains why I have pain in the middle area of my back.
My toe has healed though I have some lingering pain occasionally when I go to bend it.
Our honeymoon in Arkansas was amazing and a lot of fun. It rained on us most of the time we were there but it was still beautiful in the mountains. Our favorite activity was going to see the big cats at the Turpentine sanctuary where they rescue big cats who have not been taken care of by their owners. It was neat to be so close to lions, tigers, bears, cougars, bobcats, black panthers, leopards, and white tigers. I had to wear the boot on our honeymoon because my toe hadn't healed up yet but it wasn't too bad. The boot plus all the rain did make me slip a few times but I never fell thank goodness.
We are now trying to get ready for Christmas. Finding the money for this Christmas is going to be a little more difficult I think. But it will all work out. Because, Romans 8:28 - just gotta remember it!
Today was my husband's last day of work at what was his current job. The company did a massive layoff and he was affected by it. He was the carrier of our insurance so who knows how that is going to work. We are going to try to pay into Cobra but of course that is really expensive.
I will be having my gallbladder out in a little over a week. I am hopeful that this will help with a lot of the digestive issues that I have been experiencing lately. At the very least I hope it helps with the pain. I will be off for almost a week following the surgery. It will be nice to get some rest at least.
I had a follow-up MRI last Friday and got the results yesterday. The brain area was good with no new lesions and no active lesions. I have an active lesion on my spinal cord around the C4 area. No lesions in my thorasic area but I do have some arthritis and some misaligned vertebrae at T6-T7. That explains why I have pain in the middle area of my back.
My toe has healed though I have some lingering pain occasionally when I go to bend it.
Our honeymoon in Arkansas was amazing and a lot of fun. It rained on us most of the time we were there but it was still beautiful in the mountains. Our favorite activity was going to see the big cats at the Turpentine sanctuary where they rescue big cats who have not been taken care of by their owners. It was neat to be so close to lions, tigers, bears, cougars, bobcats, black panthers, leopards, and white tigers. I had to wear the boot on our honeymoon because my toe hadn't healed up yet but it wasn't too bad. The boot plus all the rain did make me slip a few times but I never fell thank goodness.
We are now trying to get ready for Christmas. Finding the money for this Christmas is going to be a little more difficult I think. But it will all work out. Because, Romans 8:28 - just gotta remember it!
Saturday, August 11, 2012
First Break
I broke my first bone today. Thankfully it wasn't a major one but will heal at about the same rate as any other. Here's the story:
I got to sleep in this morning and woke up around 10am. Headed towards going downstairs as our bedroom is upstairs and everything else is downstairs. As I went to take a step down to the first step, I put my heel down and it flew right out from under me. I basically skied down the stairs until the end which ends in either a wall or a door depending on what you hit first. I hit the wall and my left big toe slammed straight into it. Steve heard me fall and I yelled for him too. He came running and helped me sit more comfortably until I thought I could move. Got up and assessed the damage which mostly included soreness, carpet burns, and a swollen very painful left great toe.
We went to the ER to see if I hurt anything majorly. They did x-rays of my left foot, right shoulder, right elbow, and pelvis. Turns out I had fractured my great toe on my left foot. I was somewhat surprised since I have never broken any bones before despite being very accident prone. So it's all wrapped up and I have a shoe I have to wear to keep it stabilized for the next 4-6 weeks. Steve bought me a purple walking cane to help keep me on my feet. We are working on figuring out where to move our bedroom downstairs so I don't have to go up and down the stairs in the morning to get ready for work like normal.
We should have bought a ranch style house. *sigh* Prayers for fast healing are welcome!
I got to sleep in this morning and woke up around 10am. Headed towards going downstairs as our bedroom is upstairs and everything else is downstairs. As I went to take a step down to the first step, I put my heel down and it flew right out from under me. I basically skied down the stairs until the end which ends in either a wall or a door depending on what you hit first. I hit the wall and my left big toe slammed straight into it. Steve heard me fall and I yelled for him too. He came running and helped me sit more comfortably until I thought I could move. Got up and assessed the damage which mostly included soreness, carpet burns, and a swollen very painful left great toe.
We went to the ER to see if I hurt anything majorly. They did x-rays of my left foot, right shoulder, right elbow, and pelvis. Turns out I had fractured my great toe on my left foot. I was somewhat surprised since I have never broken any bones before despite being very accident prone. So it's all wrapped up and I have a shoe I have to wear to keep it stabilized for the next 4-6 weeks. Steve bought me a purple walking cane to help keep me on my feet. We are working on figuring out where to move our bedroom downstairs so I don't have to go up and down the stairs in the morning to get ready for work like normal.
We should have bought a ranch style house. *sigh* Prayers for fast healing are welcome!
Friday, June 22, 2012
Glowing....
That's what I will probably be doing today! I will be my own little flashlight, lol. I have to get a C-spine MRI and lumbar X-rays this afternoon to see if there is anything going on in my back that is causing the numbness and tingling in my legs along with the pain and weakness. Mostly likely there are lesions on my spinal cord that are causing this. It's just part of the deal with MS.
My hubby is going with me so we get to spend a little time out after I get done with everything. I am looking forward to getting to spend a little time with him and not be home. This weekend will be a busy one with SNA on Saturday night and then a family reunion and funeral on Sunday. Then Monday I will be off work to go to Iowa City for an appointment with my reproductive endocrinologist to get my PCOS back under control. Then another appt. with the neuro on July 2nd for a follow-up from the new meds. Hopefully we can get me working a little bit better!
Then my 30th Birthday is coming up!! Two weeks from last Wednesday! While I am still unsure about how it will feel to be out of my twenties, I love birthdays, especially mine. Looking forward to fireworks and presents!
My hubby is going with me so we get to spend a little time out after I get done with everything. I am looking forward to getting to spend a little time with him and not be home. This weekend will be a busy one with SNA on Saturday night and then a family reunion and funeral on Sunday. Then Monday I will be off work to go to Iowa City for an appointment with my reproductive endocrinologist to get my PCOS back under control. Then another appt. with the neuro on July 2nd for a follow-up from the new meds. Hopefully we can get me working a little bit better!
Then my 30th Birthday is coming up!! Two weeks from last Wednesday! While I am still unsure about how it will feel to be out of my twenties, I love birthdays, especially mine. Looking forward to fireworks and presents!
Monday, April 30, 2012
An update?
So it's been awhile since I have been here. It's really been a bit rough on me this year so far both with personal issues (grandpa dying) and health concerns. I had to google this morning why drinking water and hunger are causing me heartburn. Turns out this isn't uncommon and can signal the presence of GERD. I am going to try some diet changes before I start taking a medication for it. It's really a rather unpleasant feeling.
I sent in a request today to get an appointment with the reproductive endocrinologist in Iowa City to see about getting my PCOS back under control. It's really running me right now which I am sure is not helping my MS either. They seem to feed off (no pun intended) each other a bit.
I spoke with a nurse from my Complex Care program this morning and she was really helpful. My biggest struggle is not really knowing what to expect from my body these days. Apparently fatigue is just always going to be there. Hopefully eating better and getting some exercise will help it out. Gotta start somewhere!
Things are finally slowing down a bit in my life. Most of the busy church activities have stopped for the summer so I have some breathing room in my schedule now. Hopefully I can use this extra time this summer wisely. We'll see. My 5th wedding anniversary is in September and I would really like to get to a point where I feel better about myself and my health.
I started taking Copaxone instead of Rebif for my MS. It might seen crazy to go to a daily shot but these already seem better. They don't burn during the injection and it only hurts for about an hour after the shot. Plus my skin isn't freaking out like it did with the Rebif. So I no longer have big red patches all over my body which is a plus. The side effects aren't as bad and I don't have to take any medications to help with side effects of the Rebif. So, all in all, I think it was a good switch. I don't really even mind doing a shot daily though sometimes it's a pain. I have it in my phone to remind me each night so I don't forget. The supplies themselves are much easier to keep in a pretty Thirty-One zipper pouch instead of hauling a great big bag around all the time.
Hopefully I am going in the right direction. Only time will tell!
I sent in a request today to get an appointment with the reproductive endocrinologist in Iowa City to see about getting my PCOS back under control. It's really running me right now which I am sure is not helping my MS either. They seem to feed off (no pun intended) each other a bit.
I spoke with a nurse from my Complex Care program this morning and she was really helpful. My biggest struggle is not really knowing what to expect from my body these days. Apparently fatigue is just always going to be there. Hopefully eating better and getting some exercise will help it out. Gotta start somewhere!
Things are finally slowing down a bit in my life. Most of the busy church activities have stopped for the summer so I have some breathing room in my schedule now. Hopefully I can use this extra time this summer wisely. We'll see. My 5th wedding anniversary is in September and I would really like to get to a point where I feel better about myself and my health.
I started taking Copaxone instead of Rebif for my MS. It might seen crazy to go to a daily shot but these already seem better. They don't burn during the injection and it only hurts for about an hour after the shot. Plus my skin isn't freaking out like it did with the Rebif. So I no longer have big red patches all over my body which is a plus. The side effects aren't as bad and I don't have to take any medications to help with side effects of the Rebif. So, all in all, I think it was a good switch. I don't really even mind doing a shot daily though sometimes it's a pain. I have it in my phone to remind me each night so I don't forget. The supplies themselves are much easier to keep in a pretty Thirty-One zipper pouch instead of hauling a great big bag around all the time.
Hopefully I am going in the right direction. Only time will tell!
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