Wednesday, January 25, 2012
I have a break on Wednesday and decided to take it for me and a bite of lunch. I am starting to feel kind of bogged down. I do not feel well at all. MY vision and these cataracts are making things that I love to do really difficult. This non-stop, crazy pain is what is really on my mind. I am not up to doing much. I cannot finish my entire exercise routine at the pool. I cannot finish reading anything either--I cannot even finish sparking or eating or anything.
After falling asleep somewhere around 2AM, I woke up at 6 with that extreme "I want to slam my head through a window," uncontrollable pain. Megan had her head on straight and reminded me that little good come out of the window thing and she asked me if it was time to change my fentanyl patch. Hmmm, it should have been changed yesterday. That explains a lot. However, now I am playing catch-up with wonky eyesight and it is not a good time. I am trying to decide if I should put a rush on the cataract surgery and go for the plan my insurance will cover so that something is out of the way. I don't know when I will get an appointment with the spine doc to plan what my neck needs.
For a reasonably intelligent woman, things aren't going well and it seems as if part of it is strongly my part and the other part is this body that will not give me a chance for feeling well.
I will make a decision before bedtime tomorrow and execute it shortly thereafter. I cannot keep up with all of this!!
Monday, January 23, 2012
Yes, birthdays are alive and well in our home. Miles is 21 today. That even got him some applause in church this morning after our pastor announced that the flowers on the alter were there in his honor. He asked Miles how old and after Miles answered, there was clapping and our pastor said that "That just doesn't seem right." It doesn't seem right to me either. 21 years ago, I was in a labor room after my water broke at home. I was having contractions, one after another after another. They went on and on--but nobody was paying much attention. It was the day of the start of the first televised war in the mideast--Desert Storm, I think. My husband and thenurses were watching bombs drop on Tehran, one after another after another. My doctor came up to my room from her busy office to see how I was progressing. I wasn't and she got a portable ultrasound machine to find that my baby was trying to be born shoulders first. That is the one way that a baby cannot be born--so they rushed me into emergency surgery and our 11 pound 2 ounce baby boy was born. We named him Miles Patrick and he was totally beautiful, especially after having avoided all of the hard work of being born in the natural way.
We were in the hospital about 6 days together. I had some problems after the surgery and they kept me to observe me. We finally got home and that is when some issues began with our fifth child. Our babysitter didn't notice it. Neither did his father. However, I smelle something entirely rotten on him everythime I fed him or touched him. I didn't love him less or leave him alone, I just kept noticing this smell that nobody else noticed. After a second day of this and getting negative responses from everyone, I finally called our pediatrician. Thank heavens for this wonderful man because his answer was "If it bothers you enough to call me, I want to see him." I took him to the office and they did some routine checks on him. They found his white blood count to be incredibly elevated and they did a lumbar puncture. It turned out that our beautiful boy had group B strep, a totally awful condition that kills newborns. I get chills down my spine when I think of the next thing our doctor said to me: "If you had brought him in yesterday, it would have been too early to detect and if you had waited one more day, it would have been too late to save him." That rotten smell that I was the only one to smell was an act of God and I definitely believe in Divine interventions. Miles spent the next two weeks in the hospital receiving IV antibiotics and I spent the same two weeks skeeping on a chair that made into a really uncomfortable cot next to him.
I met some interesting people int hose very long days that took a big chunk of my maternity leave. I met a family whose boy had ridden his Christmas bike outside without permission and had a nasty accident when he slid on the ice and flipped that bike breaking both legs in multiple places. He had been int he hospital several weeks and was expected to be there another month to six weeks. I sure felt sorry for his mother--but she went home at night. He was old enough that she could go home at 8:30 and then come back the next morning at 8, or 9 if she got to sleep in a bit. He was being tutored each day and spent a lot of time playing video games that were donated to the pediatric ward. I also got to meet the baby that started out being in Miles' room with him. She was a sweet little thing, about 6 months old and about half of his size. The doctor admitted her as a "failure to thrive" baby and she never had a visitor. She was beautiful and it was sad. The hospital was feeding her standard formula and she gained about 2 ounces every day. The staff knew that she could be released, but they kept her so,e extra time, putting off making a call to ask someone to come and get her. She didn't get to stay in the room with Miles because there was a lame possibility that his strep might be contagious. I think they were also concerned that the attention I gave her might be too great a loss, so they put her in a different room, all by herself. They gave her attention when they could and they brought her to the nurse's station on third shift when she was awake. The entire scenario broke my heart.
I learned a lot when Miles became ill. I understood miracles and I understood deep down sadness. I was pretty hormonal at that time--and being around children who were ill or deprived left a big mark on my brain. I do wonder where that little girl ended up, now that she is 21. The boy who fell off of the bike has to be in his mid to late 20's now. I wonder what kind of work a junior daredevil ended up doing.
As for me, my pain has been a bit more tolerable today. I went to the grocery store before church. After church, I went to the fitness center--to the pool and to the sauna. I am following my pain doctor's advice to medicate myself and treat this as quickly as symptoms and pain are a nagging feeling so that it doesn't get ahead of me. This is a tricky game condiering how many different meds and patches I am using to keep this thing at bay. It is never totally gone, but I can make it kind of numb. That is a great improvement over the out of control screaming pain I felt every day of the sixteen days before Friday. I am blessed.
Have a wonderful week!
It's always good to count our blessings.
PS I fell asleep before I posted this. I slept for almost 4 hours without an interruption. I haven't done that since this pain started. Yes, it is what woke me up, but this is improvement. I'll take any little bit of improvement I can get.
Friday, January 20, 2012
I finally have information about what has been causing all of the pain and grief. I didn't need a "new" MRI, the October one was adequate. My pain doc took a look at it and it said that I have damage to the disks between C3 and C4, C4 and C5, and C5 and C5. He had a similar profile and although he offered (and did) an injection in my neck, he said the only thing that is truly going to help me is surgery. He is scheduling an appointment for me with the best spine surgeon around--it may be a wait to have the surgical consult, but it is starting to happen.
My pain doc has had the same issue and he was able to trace with his finger exactly where this wild uncontrollable pain is at. He offered me everything to help until we can get me to the surgeon. He LISTENED to me and was kind and gentle. That injection was a bit of a stinker--I am hoping to get short-term relief from the injection and the prescriptions refills he wrote for me that the other docs have given me.
He told me that he understands this and it hurts like #ell. I don't know how long I will have such awful pain--I'm praying for relief with this injection in my spine--but it is a relief to know that somebody finally GOT it. I can move forward now.
As for eating, in the last week, I have had a steroid injection in my shoulder, 6 trigger point injections in my upper quadrant, and now a major injection into my neck. I will be having to fight off what the steroids cause. I will have to keep praying. God bless my pain doc!!
Thanks for being there for me--you all got this too, and I appreciate the awesome words of caring and support. Take care of yourselves, you are wonderful.
Thursday, January 19, 2012
Well here goes... I have seen five doctors now and a chiro and a physical therapist. I had x-rays of my right shoulder and I had x-rays of my neck. I have no broken bones. I am the proud owner of 2 new prescriptions, a muscle relaxant and patches with anti-inflammatory medicine for my body to absorb (since I cannot take them orally.). I had a steroid injection in my right shoulder and I had 6 trigger point injections in my right quadrant of lidocaine. I have an appointment tomorrow at the pain clinic, but I think my special pain doc is still off on medical leave.
My condition has not changed. The new meds kind of mask the pain or take the bite off of it so I can kind of/ sort of act like a human being. It hurts like #e!! and I am sick of it. I keep forgetting things like eating or when to take these meds, so I had to make myself a sheet to remind me when to do things. Hmm, forgetting to eat has never been a problem of mine before--maybe this is my "silber lining." Although I doubt it, I generally gain weight when I don't eat enough--and I did have a significant gain last week at WW--over 3 pounds.
I know there is something wrong here--and x-rays don't show everything. I cannot swim correctly or complete my pool exercises which saddens me even more and is taking a toll on my body. Walking is becoming more and more difficult and I am needing my back brace the entire day at school. The children look at me and ask me what is wrong or if I am sick. They ask me if the doctor can make me better. I cannot hid this and I cannot hide from this.
I am worried on top of being in pain. I am losing me to this and it isn't fair or right. OH my...
So this is my update. As I try and type, my right arm feels like a foot ball that is getting too much air pumped into it and it is readying itself to explode. This is creepy and I need relief. Tomorrow at the pain clinic is my very last chace. I am praying seriously.
Take care of yourselves.
Thursday, January 12, 2012
Disclaimer-Writer is in a very low and pained mood. This is not likely to be an uplifting blog and I don't want to bring anyone down. I am seeking solace and solutions after one of the singly most frustrating days of my life.
I am not sure I should write this, but writing may help me move on when nothing else--not one thing on this earth--has. Th big topic at hand is this unrelenting nasty pain in my neck and right shoulder. It has been out of control yet in control of me since last Thursday. There is nothing I have available that will help give me relief. For the record, I have tried my pain meds which are strong medication, heat, ice, gentle water in the pool, the hot tub and sauna, medicated cream, lidocaine patches, my regular meds staying consistent and timely, prayer that is ongoing, shoulder stretches that my physical therapist taught me, a trip to the chiro, and finally a trip to the ortho and a steroid injection.
I have no explanation for why I am having pain--none unless this is left over from my fall on November 30. The injection that my ortho gave me in the other shoulder was finally effective on the day prior to the beginning of this pain, so I am wondering if all of the other trouble masked this. I know that my doctor who has disappeared diagnosed some major arthritic issues in my neck and prescribed traction (which I forgot to put on the list.) I had a CT scan of my neck after the fall in the ER that they said indicated no neck injuries. I had x-rays of my right shoulder today that didn't indicate anything outside of my typical arthritis. HOWEVER, no matter what any of this proves, I am having serious and severe pain in my neck and right shoulder. I told my ortho today that I was "ready to take a spoon and dig out all of the flesh in my neck, back, and shoulder" today. He told me that I "shouldn't do that." I was not joking--I was in tears most of the time I was in their office except when I was getting the injection, an awesome distraction.
I saw him this morning and by 11, the pain was off the charts. I didn't quite know what to do. I was working hard on my new schedule and after a less than pleasant issue with a teacher who was unwilling to problem solve on behalf of a child, which I simply gave in on because I had no energy in me to "fight the good fight," I completed it with a couple of small glitches. After a couple of contacts with other teachers, I think I am ready to see students again tomorrow. *That is if I am able!!
For the fun of things, I had gotten a phone message from one of my sons regular doctors that basically said that our insurance hadn't paid on his account in months and his balance was well over $900, so she was canceling his appointment on the 16th because she didn't think it was good to add to such a great expense that might cause us significant grief. I spent the entire afternoon working on above mentioned schedule and talking to my insurance company. They insisted that they haven't received a bill from this doctor since July 18 which leaves about 10 other visits. Her office said they needed some additional information from me--they have no record of that request. (Enter this info--my husband and I both have different Blue Cross policies. Mine is primary because my birthdate is prior to his. He insists that they have mentioned to him that he needed to contact his insurance because they needed more information. I am guessing that the doctor's office has made an error and has billed the wrong company.) When I tried to call the doctor's billing person, I was fgiven multiple runarounds--at least 6 times. After speaking to Blue Cross people three times, I believe them, which is rare. I tried to call the doctor's office again at 1:05 and left a voice message. I never heard a word from them before I left for my meeting upstairs at 2:30, but there was a message by the time I got up there. I couldn't return the call until my meeting was over at 3:45. I called immediately and was told that the office staff person I needed to talk with was out of the office for the day and well, after hearing this multiple times about lunch today, I became angry and simply said "Are you kidding. I have been trying to share this information with you at least 5 different times." She pout me on hold for a few moments and then told me that she was leaving a message with the doctor. Grr-rr, don't forget that I was in awful pain during these hours of monkey business. I won't even go into the trouble at the meeting right now either. Anyway, the end of this story is that I received a call from the doctor about 5:00 and it seemed that she was angry with me because she didn't feel that I had left enough information that she could use until whatever office person was missing was back tomorrow. She didn't seem to get that her staff jerked me around all afternoon including over an hour and a quarter of answering machine responses in the middle of the day. Hmm, not fair to say the least--and this is a doctor who has cared for my children for 18 years. I am hurt by her tone and response and all of this monkey business.
My husband convinced me that I should call my pain doc about this nasty pain, and that made sense to me. I got his nurse whom I sarcastically refer to as "Nurse Ratchet" because she goes out of her way to keep me from Dr. F. She reamed me all over town and told me that I had to call the ortho back because maybe all of this pain was related to the injection. Hmm, not so--I had it when I went and I had it after I went. She insisted, so I did and they wouldn't give the doc a message either, telling me that it takes up to 3 days for the injection to work and that it can get worse in the beginning. Hmm, I have had at least 20 of these injections in the past year and I know how this works. I explained to her that I was concerned that some of the info from my last MRI indicated that there were problems there and that I called my pain doc to find out if he could help me. She abruptly told me that they couldn't give me pain meds when I got them from him. I told her that I wasn't looking for pain meds, so she replied that they didn't "do necks" and that I needed a neurologist. I called to tell my pain doc's nurse what the ortho's office told me and of course, I got her answering machine.
At this point, I told her that I was going to the pool to see if it might help and that is what I did. I couldn't come close to doing me regular exercises, I did stretches, some squats and lunges, some walking and a lot of gentle laps. I went to the hot tub and held my sore area against the jet in the whirlpool. Then, I showered and went to the sauna. I got to the door of the fitness center when I was fighting tears in my eyes.
I am not sleeping much and it is in about 20 minute increments. I wake up and am squirming in my seat, trying to figure out how to sit or function, This pain is really crazy. The ortho thought it was an inflamed tendon. The chiro who really caused me pain on Monday thought it was inflamed tendons--one between my rotator cuff and shoulder/neck area and the other in the area of my collarbone. He did ART techniques on my shoulder and then massaged and worked on my neck. He had another chiro do a laser treatment on my shoulder. Then she also taped my shoulder. I felt no benefit from these things that cost me $50.00 that my insurance wouldn't cover.
Friends, I am awful right now. All I do is moan and cry and wring my hands. I cannot focus on a thought--don't even ask how long it is taking me to write this. I don't know what else to do but I am unsure if I can really work tomorrow. I do not know how to manage this, it is maddening. I am developing some really weird coping techiniques like grabbing a handful of my hair and pulling it. I am not comfort eating except for lollipops that I just finished off. (Lollipops over holiday treats that are still here--what is that about? I don't know what is going on with me and who I am.) Anyway, I don't think my family wants to be around me--I am with Chloe on a love seat in the dining room and nobody is anywhere around. My doggies still love me anyway!
This is the time for me to beg. Does anyone have an idea for me? What can I do to manage this pain? Who do I call or what do I do? How can I get over this? How do I get past this? How do I get some rest? How do I get back to being myself? I am tired of crying and all of this. I need peace. First, I need help.
If you read this entire rant, thank you. I appreciate anyone who cared enough to look and read the disclaimer. I probably should delete this entire thing but I am not going to do that in case that somebody who knows medical stuff or medical office staff or whatever can give me a suggestion that will help me. I am truly desperate. I have only had this level of pain two other times in my life--once when I had an infection in my spine and once when I had RSD (or CRPS.) Check those conditions out and maybe you will understand why I am so worked up with this extreme pain.
I wish you well and I hope that I have taken all of the bad vibes off the earth so none of you will have to address any of them.
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