Saturday, May 31, 2008
In the meantime, my friends Kira and Keesha need prayers. If you're a praying person, please include them in your daily prayers.
Take care and I hope everyone is having a terrific day!
Wednesday, May 28, 2008
I started driving late, while most kids started driving as soon as they could. It took a stormy, rainy day, carrying a three year (she was in child care at the college I attended) to school with me, for me to realize "I can and will drive".
I already had a "get started" car. You know, a beat up old car, so if I had an accident, I wouldn't feel bad about wrecking our new car. Besides, the new car was a stick and I really wasn't ready to drive one, yet. I decided to drive the day of the storm, but really all I did was start the car and turn it off, for at least the first few hours.
Later that day, after it stopped raining, I got in my car and drove to my family's house (my mom lived close by). My mom, sisters, brothers. and their families, could not believe I drove over. They really thought I was playing a trick on them. Well, they were literally in shock, and refused to believe. They called my house and Mickey was still at home, while the kids and I were standing right next to my car, then they believed.
The next day I drove to the DMV, took the written and driving test, and got my license. November 1989, I was 26 years old. It was such a wonderful feeling to drive and be able to go wherever I wanted without waiting for my husband, or others, to drive me around. After marriage, and having children, it was one of the happiest days of my life.
I never drove on the freeway. Two years later (1991), Mickey bought me a new car and I started working (I was being a mom until then). That's when I realized what a little social bunny I was. I couldn't believe that working was so much fun. I worked during the day and drove whenever (wherever) I wanted to, afterwards.
Two years (1993) after that, I had my first "real" highway experience when I drove, with the kids, to California and we've lived here ever since. Mickey came four months later with the furniture in tow.
I had to get use to driving on the freeway (WHEW!) but when I did, I went everywhere. The freeways in California were much easier than the highways in Chicago (I tried once or twice). My kids and I traveled all over California. I was able to take them to Disneyland and Knott's Berry Farm, which quickly became an annual family event. I haven't been since April 2006. We celebrated Tanira's birthday at Disneyland that year. I love amusement parks, I seriously become a kid again! HA HA!
In November 2005, I had just gotten a new car for an early Anniversary gift. I really liked this car and it was my third time experiencing the thrill and smell of a new car. I finally had a car that was the perfect fit and color, and I could no longer drive it.
No more "get up and go". Being unable to drive was one of the hardest things I had to adjust to. It's been two years (in Aug) and I still miss it. I don't like being stuck.
If I want something from the grocery store, I have two choices. Wait until Mickey is ready to go and hope I remember what I wanted (most times, I don't), or I can go with him and pick up whatever I want. Maybe I'll remember what I originally wanted. I can make a note, but I've forgotten, many times, what I wrote it on or where I put it. Sad, truely sad!!
If I want something from a clothing store, I'm out of luck. Mickey (like a lot of men) really doesn't like going to retail stores. I might get to go, once or twice a year. If I want something from Walmart or a store like that, he'll go for me, mostly to pick up coffee supplies. However, I might have wanted to go just to browse around, tough. Unless it's a grocery store, he doesn't want to go (seriously though, I do get to go to other stores once in a while). I might want to go visit my family, he never (even on weekends) feels like driving that far (45 min. to an hour).
Forget it, if I need hair supplies, running out of oil moisturizer is a nightmare for my hair. Well, I'm out now and for a month I've been hearing, "oh yeah, I'll pick some up for you". Hasn't happened yet and my poor hair is suffering. I do understand that I may not always get to travel to stores, especially for a few items. The wheelchair weighs 82 pounds and we don't have a chair lift. I'm sure it gets real tiring having to lift this chair every time I get in or out of the car. On the other hand, it leaves me very limited.
Like I mentioned before, I get out of the house once a week, for sure, and maybe on special occassions. If he feels up to it, I can get out for shopping or go out to eat. I definitely get out for doctor's appointments. It honestly makes me feel like such a burden.
I had to wait for my brother to visit from Chicago before I could visit my sister who lives in Las Vegas. It's a long, "hard" trip, but a sacrifice I'm willing to make for family. We have to make stops along the way, but it can be done.
We took a trip to Chicago last year for my mother-in-laws 80th birthday. It's a nice drive with terrific scenery, but I definitely couldn't and wouldn't sit in a car that long. Thank GOD for airplanes.
Anyway, I wanted to visit with my brothers and cousins. When arranging/planning the trip, we agreed that I'd be able to visit everyone I wanted to. Once we got there, he gave me one day. I admit, I was having a rough time, healthwise, but that was only enough time to visit with two people. Thank GOD, my brother made the trip to the suburbs to visit me and on my one day out, we met him for breakfast and a short trip to a mall.
The entire trip was spent with Mickey's family and that was not how we originally planned. I love them dearly and I love my family. You live and learn. I would have spent every day with my brother, if I were able to drive, and spent time with Mickey's family. Life stinks sometimes, thankfully, most of the time I'm able to smell roses.
Not driving is a lose of independence and a handicap in itself. A lot of the first six months of depression was over the loss of this independence. However, life does go on!
It's amazing to be on so many various medications and still not have relief from pain, and other symptoms. August will be a year of being on the same medications, (which are actually ones that provide the most relief, based on trial and error), and at the one year mark, we will have a conference with the magnificent Dr. V, to determine if we should explore other options (ie. changing meds again, pain pump, injections, etc.).
The main goal for medical treatment, is to try and prevent me from starting each day with pain already at level 10. I'm not sure what meds we could change that I haven't already failed at, and I'm already taking the ones that appear to work the best. Unfortunate for me, that the current meds don't provide maximum relief from pain. Honestly, I don't even know if there is such a thing.
For today, I started out better than most, regardless of the pain level. At least my meds have kicked in and I am able to tolerate the current level of 6. I guess at this point, it's not a matter of whether I can tolerate the pain or not, I'm just tired of being in pain everyday, all day for two years. Enough, already!!
At least the pain, before the last two years, when this all started (untreated, therefore undiagnosed) was manageable, and more than tolerable, with Tramadol.
My goal each day is to keep the pain level down as low as it can be, with the current medical treatment. Unfortunately, I have yet to experience pain below a level of 5. Most days, there's several times throughout the day, where the pain spikes up to an 8 or 9. I try to ride it out with icepacks and complete bedrest.
Distraction is another (non-medicinal) method that takes my mind away from everything that's happening. Days when I'm able to get out of the house, I don't think about the pain at all. When I'm on ASAP or blogging. Weekends when my daughter comes home. When my friend comes over. When I'm on the phone, which isn't often with the hoarseness. However, I do make sure I take my meds on time, but it's just another way to "escape" from it all.
I hope everyone has a pleasant day!
Monday, May 26, 2008
No one knows how hard it is to "know" your day will always begin bad. It sucks, and some days I can't stop the thoughts I have of "I just don't want to be here". I'm tired of living like this and no one in my family understands, or "gets it".
It's no big deal to everyone around me and I don't understand how they could not "know" how hard it is. It's so easy for others to say "you have to be here for your family". I know because I can distinctly remember saying this when my sister was ill. I never dismissed her pain or anything else she was going through. However, I admit, that I didn't understand, until now, how hard it was for her to be here every day and be this sick. I know she was much sicker, towards the end, than I am now, but I understand that it's all the same when you know (and have debilitating symptoms that remind you) you won't get better because each day you only get worse.
You're bothered with the symptoms you have each day and, any given day, you have to be bothered with new, or an increase in existing, symptoms. I'm so tired of it all. The little things and the big things, equally.
I've done it for two years, and to be honest, I'm not even sure how I've survived this long, but for the grace of GOD. I'm tired and worn out and I'm not sure how much more I can handle. I'm not saying I don't want to live, I'm saying "I don't want to live like this".
It is the worst living nightmare of my life. Through it all, I continue to smile as I've done my entire life. I smile through the worst, and best, of times.
Sunday, May 25, 2008
To tell you the truth, I was out of it from the wonderful IV pain relievers. I wasn't really alert and focused on what they saying or what it really meant for me. I heard the Neurologist state that I might need surgery but, I also heard him say that we'd talk about that once I was released from the hospital. He gave me his business card and told me to call his office for an appointment, after my post-op visit. He didn't really know what a syrinx was or anything about it, so he performed an EMG test and referred me to a Neurosurgeon.
The Neurosurgeon did a brief exam (I remained clothed) and ordered a full spine MRI with and without contrast. After the MRI, I went to see him again. He reviewed the MRI and (based on Mickey's recollection), stated that the syrinx could cause all the symptoms I was having (and some) but I was not a surgical candidate. He explained (and drew a diagram) that it would be dangerous to operate on the syrinx until it was larger or I was paralyzed. Until the syrinx was larger, surgery would be a very high risk because of the size and location. He stated that operating on the thoracic spine, in general, was a great risk. Before he left the room, he said "it could be worse". Considering the progression that has occurred over the past two years, he was definitely right.
Unfortunately, I left feeling as though I was still clueless. I searched and searched the Internet, looking for any and all information I could find on "thoracic syrinx". I was also looking up spinal hemangiomas because of the fracture at L4 and because of the new one that had developed in 2 months, at T10.
I found http://www.asap.org/. ASAP was in the process of closing one message board and creating a new one. I started on the new forum so I didn't have to read too many older posts before I was current. In the one week it took for me to read the older posts, I was finally learning what a syrinx was. I was able to learn from people who were actually living with this disorder. I seemed to be more progressed than others but we were all struggling to deal with depression, pain and increasing symptoms.
I still didn't understand how I progressed so rapidly but once I learned what symptoms could occur, I could remember having symptoms years before. The mornings I woke up sick before going to work. Being sick all day at work, sometimes laying on the floor until I felt better. I got better when I left my job, but I still had symptoms and in less than 6 months, the tremors took over my life.
That first 6 months of depression was the worse time of my life. Once I started visiting the ASAP forum (message boards), I became a different person. I started moving from depression to acceptance. I started making changes to accommodate my disabilities. I started realizing that having Syringomyelia meant that I had the disorder which could progress, but it was not a death sentence.
When existing symptoms increase, or new ones arise, I needed to find a way to manage it. I needed to find a daily routine that would keep me from being up one day and then down for three or four (which was a constant for me). If I had not found the ASAP forum, I might have stayed in the depression stage forever (who knows). I do know that I depend on the "family" I now have. Everyone there is very supportive, knowledgeable and encouraging.
It's important for me to visit the forum everyday, more so when I'm having especially bad days. I don't know where I would be in understanding and managing what I've been going through, without the support, encouragement and knowledge I obtain from my ASAP family.
- Severe, chronic pain in back and legs
- Uncontrollable, chronic tremors in all extremities
- Abnormal sensations on spine, arm & leg - right side only
- Abnormal body temperature control & sweating
- Chronic hoarseness
- Breathing difficulty, especially when inhaling
- Swelling in hands & feet
- Tinnitus - pulsatile, clicking & roaring
- Chronic Itching
- Muscle weakness & spasticity in all extremities
- Chronic fatigue & exhaustion
Persistent and/or Occasional Symptoms:
- Double, blurry or snowy vision
- Bladder incontinence
- Numbness on face, lower leg, hand & arm - right side only
- Tingling in fingers & toes - right side only
- Severe depression
- Sharp and/or pressure headache
- Heavy chest feeling - sometimes present during difficulty breathing
- Sleep disorders - insomnia, sleep starts & sleep paralysis
- Word finding problems - creates a stutter
- Benedryl, OTC
- Inhalers - Pro Air & Qvar
- Lidoderm patches
- Icepack - placed on back
- Distraction - Talking on the phone, visiting with friends, crossword puzzles, etc.
- TENS Unit
Damien (the oldest - 28):
As a child, he was the most helpful, adorable and loving little person. He had one of those faces of a child who'd been here before. He was also the daring child. He was in trouble a lot during his teens. He always had this need to prove himself.
He was 14 when we moved from Chicago to California. He hated it from the moment we got on the road. I drove from home to California, when my mom (deceased) started having difficulty accepting the life of an amputee. He was helpful to his grandma, but afterward, he would seem to hang with all the troublesome kids in the neighborhood.
At the age of 14, my loving little boy became a trouble maker. He found trouble, it never had to come looking for him. He rebelled, in every way possible, to show how unhappy he was, being in California. He continually asked us to let him live with my brother so he could stay in Chicago. To me, it was the best move I could possibly have made for my children. Our neighborhood, in Chicago, was becoming the "drug spot", very fast.
Little did I know that drugs, and alcohol, would become the biggest problems in my childs life. Once I became aware of the signs, he would spend weeks away from home to keep me from knowing what was happening with him. By the time he was 20 or so, his life of drugs and alcohol had led him to a prison cell.
He knows what's happening with me, and the only thing he can do is provide words of encouragement and support, over the phone. He is scheduled to be released soon and I pray for him, and his son, that he has left the life of drugs and alcohol behind him and is ready to become a productive member (and adult) of society. Not only do I want my son to be a part of my life, during this time, I also want his son (Jaeden) to know his dad and for Damien to be able to teach him right from wrong, and the "don'ts" of dealing with drugs and alcohol. Overall, he's a wonderful kid.
Michael (the middle child - 26):
Michael is my little "debater". He was such a lovable little baby with cheeks you love squeeze. He loved the move to California and being able to spend time with family other than his parents and siblings. My sister lives in California with her family (spouse, two children and grandkids). He missed his cousins once they left Chicago. My sister and I had two kids that were close in age. Anyway, he made friends quickly and loved school, at that time.
He was a daring little one also, but in a different way. He loved getting awards from school, learning to swim, and joined in activities and church. He tumbled and played basketball, these were his favorite things to do. Growing up is hard for all of us, some handle it better than others. That's just the way life is. Michael adored life and he still does.
He's successful in work and as a parent (his daughter Tanira). He depends on his family a lot, but I guess there's always one who never wants to leave mamma and I'm totally fine with that. In fact, I love it and I love having my granddaughter around all the time.
Michael believes that all I need to do to get past this illness is "put my mind into changing the situation". Whether it be pain, difficulty walking, the chronic hoarseness (just talk normal) and especially the meds. It's all mind control. It's actually hilarious to say "he takes meds for pain". LOL
He'll help me with something (or do things for me) when I ask, but he makes it clear that if I don't ask, he won't assume. He's spent a few times discussing my illness and symptoms with me so he could better understand what I'm going through, and so I could see his perpective on the situation. For the most part, he spends a lot of time out of the home. Overall, he's a terrific kid.
Keonna (the baby and dancer - 23):
Keonna was the girl I always wanted. After spending time with my boys, it's hard to believe that the first time I was pregnant, I wanted one child - a girl. Thank GOD I had 3 kids, I wish I could have had more, regardless of the sex. She doesn't remember a lot of Chicago so she never really cared where we lived.
She's such a joy and very creative. She loved to cook from an early age and would imitate her grandmother (my mother-in-law). She was too cute, in the mornings when my husband and I were at work, she'd make breakfast for her and the boys, this included "coffee" (what??, they were kids). Mickey and I heard about it from the boys, after the fact, because they were teasing her about being like "grandma", making breakfast and coffee and telling them to "move it" because breakfast was waiting and they didn't want to be late for school. My little darling.
When I first became too ill to manage, without a cane, it was Keonna who greeted me at the door in the evenings, after work, to help me into the house. She was the first to know that I was having great difficulty with pain and walking, at the end of the day. Over time, she would see how hard it was for me to literally drag my legs along, leaning on her shoulders, just to make it to my bed.
When I came home from the hospital, it was Keonna who took care of me, day to day, until Mickey came home from work. After a few months time, I was able to make it to the kitchen to cook a "small" breakfast. Cooking large meals was difficult, even then. She didn't register for school (U of I) the next semester because she wanted to be there for me as long as I needed her.
She moved to Long Beach (or LA, I can't remember), 6 months after I came home. I was still having out-patient therapy but I adjusted the schedule so my husband could take me. He preferred taking me anyway and tried to make sure my appointments were scheduled after he got off work. Unfortunately, it didn't always happen that way so it was a good thing Keonna was home, even for the first 6 months. She slept in late most days so she never really witnessed a lot of my mood(s) (crying fits, "why me GOD" and anything else in wonder of "why" this was happening to me).
Whenever Keonna comes home to visit now, she's still my "saving grace". She spends time visiting with me, occasionally we've play board games, we watch movies together, she plays computer games while we enjoy conversation together or we just sit and talk. Sometimes, we eat our meals together.
I believe it was really hard for her to see me struggling so much. Then when I was hospitalized and had surgery, she went into "overgear" in making me comfortable, being supportive and helpful with anything I needed. She still does all that she can (calls regularly and comes home to visit) to bring sunshine into my life. Overall, she's such a joyous kid.
My three angels, what would I do without them. I love and appreciate them all.
I have two sisters (there once was three) and one brother. There are quite a few step brothers and sisters. I also have quite a few nieces and nephews that range in all ages.
My Husband (Mickey):
In all fairness to my husband, we have had a pretty good marriage. We've been married for 26 years. All couples have problems and we have our share too. We both love and care deeply for one another. With both of us raising kids, working, coming home tired, we fell into a routine of discussing what we needed to and going to bed. We never had to deal with a chronic illness before, therefore neither one of us were prepared for what my needs would be.
My husband, is a fixer. With a rare, chronic illness there's really nothing to fix (no quick fix). With SM, doctors won't operate until you're paralyzed or your syrinx encompasses the entire spinal cord, compromising the flow of cerebral spinal fluid.
When I came home from the hospital, he had everything I would need to manage inside the home, on my own (he works through the day). He had purchased a recliner that will place you in a standing position, because the doctor, or therapist, suggested that something like this might be helpful. He made sure there was also a snack table for meals eaten in the Living Room. He got a high chair for the kitchen so I could sit while cooking or cleaning (a time before I realized these things made the pain and tremors worse). Standing was a major issue because the tremors were out of control. He also had everything, and more, the doctor or therapist had recommended for the bathroom.
He did everything possible to make sure I felt safe and comfortable in my home.
Over time, he's added numerous things and moved furniture around or to another room, in order to make it easier for me to maneuver through the house. If somethings not working out, he'll fix it, move it, make it or buy it to make sure I'm comfortable. The best things, not to downplay anything else, were building ramps at all the exits, putting safety rails inside the shower and attaching the mirror to the wall, in the bathroom.
He's made so many adjustments in his life to accommodate my illness and inability to do anything too strenuous, or anything that would cause an increase in pain and several other symptoms.
- He has taken on all the household chores. I try to do my own laundry if someone takes my laundry bag to and from the garage.
- He does the yard work and gathers and takes out the trash. We have a pick-up once a week.
- He already did all the grocery shopping so nothing changed in this area.
- We both worked before and now it's just him that has to wake up early and go to work. I do wake up with him in the morning and I still contribute my regular amount to the household fund we use to pay our bills from.
- Every morning, he makes me a caramel macchiato, brings me an icepack and most mornings he has to help me get to a sitting position.
- He picks up the newest DVD's each week so I have something "new" to watch.
- He keeps track of, and pays all the bills.
- He has to do all the driving if we go anywhere, or whenever I have a doctor's appointment. He goes in with me which is terrific. I have an average of 5 appointments a month.
- He takes care of dropping off my scripts and picking up my meds each month.
- And, anything else I can't remember at this time, but basically, he does it all.
In the beginning, Mickey was having such a hard time with cleaning the house. I was use to being too particular with (dusting, mopping, vacuuming and cleaning the walls) everything and believed that everything should be in it's place. No mess, no clutter. I was frustrated with his way of cleaning but I couldn't do anything about it. His motto is "a house should look lived in". I say, lived in but not trashed!. LOL
One weekend, I called my daughter, my nieces and told my son, that I needed help. I really needed someone to help clean my house because it was so dirty. I ordered pizza and everybody (except my daughter) did a wonderful job of cleaning my house the way I was use to seeing it. At least my house was clean again since I had learned my lesson that it was something I couldn't do without needing to go to the ER or my PCP for better pain meds. Most times, over doing it puts me in bed anywhere from 2 to 4 days, screaming from the pain.
After that, my husband told me that I didn't need to call for help. He knew how to clean and he'd take care of it (you know, the things us women make sure are done when cleaning). All I can say is he tries but I'm embarrassed to invite company over. I do have one friend that comes over but most of the time, we sit outside on the porch and talk until, either my voice goes out or my tremors and pain get worse. Heaven forbid if she were to ever ask to use the bathroom. Talk about embarrassment, I don't even want to think about it. It really took a lot of adjustment on my part to just let go.
Actually, there was another friend (early on in my illness) who use to visit every Thursday, before she started working. I must give him credit, he did make sure the living area (not my bedroom) was clean every Thursday. My son does the bathroom and sometimes he would do it, sometimes not.
I can, and do, understand how he could be so extremely overwhelmed, and tired, with all that he's doing, that it becomes easy to put what I'm going through at the back of his mind.
I also understand why we spend so much time apart, even when he's home in the evenings and on weekends. We don't watch the same type of programs on television and we each have our own computers (in different rooms).
I don't understand why he doesn't provide a listening ear, encouragement, words of comfort or a shoulder to cry on when I'm having a really rough time, and depression is high. I would say that I've experienced approximately 7-10 occurrences over a two year period. I think it's not such a major deal and it shouldn't be that difficult. However, I'm not walking in his shoes.
He's not a natural caregiver. That makes so much difference. For instance, I am a caregiver by nature. It doesn't bother me at all to listen to others, provide encouragement, comfort and basically "be there". He'll be the first one to tell you, that's just not who he is. He's never been a "people person" and could care less about sitting home alone all day, while I love spending time with others.
The bottom line is: He does what he can, in his way. I accept him for who he is, and not who I want him to be. He can't provide the encouragement and emotional support I need, however, I'm completely thankful and appreciative of everything he does provide. It's not as if I don't have other options.
There are so many husbands and wives, all over the world, that leave the marriage because they can't handle dealing with, or being with, a sick (or sickly) person. Some may leave because they can't handle the words "chronic illness".
I'm thankful my family is here with me and using whatever talents or gifts they have. I need to recognize the gifts each of us has, and not push for more than GOD has given any one person the skills to manage. I need to recognize that GOD's gifts are where we find them, not who we find them in. I need to separate the fact that Mickey is my husband so I can continue to recognize that he does all that he can with the gifts he does have.
In the months that followed the beginning of the tremors in my legs, I had very high hopes that this part of my life would all be over soon and I would get back to life as I knew it. Once I began to feel better from the surgery, I never felt comfort from being off work. I missed work because it gives me a chance to keep busy (my mind works 24/7), socialize and spend time with people outside my family. If you're around your family 24/7, you will never have a chance to experience the feeling of missing them.
Every time I had an appointment w/my doctor, I became more discouraged that, healing and no longer having these tremors, was further away. A month turned into months and I became more depressed with each month that passed.
Acute Rehab, In-home therapy, Out-patient therapy. Each time I finished a round of therapy, I became more depressed and less hopeful.
I began to realize that I was getting more and more depressed but didn't understand why. Especially when I was so hopeful of returning to work and getting my life back.
However, as time passed, I realized I was extremely depressed with good reason. Although I was surrounded by people who love and care about me, they were also the same people who I couldn't express what I was going through/feeling with. I was realizing that this little incident was becoming a bigger issue that I had to work harder at fixing. I actually thought I wasn't doing enough even though I worked so hard to gain my life back. Can we say "Depression"?
How could I break out of this mode? What could I do, despite what was happening, to move forward in my life?
I had already begun having new symptoms that had been reported to my doctors. After, at least 6 months of depression, I had to figure out what I could do to get through this depression period and manage these symptoms so I could smile again (and mean it). That's around the same time I found ASAP and other sites and started to learn what I could about SM.
Learning to Manage:
While learning about this illness, I began to feel strong again. However, without realizing how I was hurting myself, I started trying to do the things I did before the illness. Unfortunately, I had to learn the hard way, that I couldn't do all the things I once did.
By doing things like, (cleaning, cooking, doing laundry, trying to walk longer w/the walker, anything that required lifting, etc.), I was never allowing my pain level to get to a point where I could manage. I could no longer do these things, it was a very sad awakening but w/the support and help from my husband, I managed to let go.
By letting go of activities and chores that caused an increase in pain, or caused extreme fatigue, I realized I could have a life with this illness. Although, very limited (not to my liking), it's still a life. It's boring, demeaning and very frustrating but at least I can now function. I still have to rotate from my bed, to my chair, to propping on pillows, and back to bed, but I'm here and dealing with increasing symptoms and depression much better.
When I choose to get out of the house (once a week and for special occasions), I know, from experience, that I will have an increase in symptoms.
I would rather live with several days in bed recuperating after being in the real world (with my family), than being in my bedroom keeping the pain and other symptoms at bay.
I have to remember, each and every day, that the sun always shines and so shall I, until I can't. I try, every day, to still have some level of hope, to keep smiling, and to be here with my family.
What's been happening over a two year period?:
I had a very difficult time realizing that I couldn't drive as long as I have tremors in my legs. I understand, because they are violent, constant and uncontrollable, however, losing my ability to drive is probably one of the worst loses of my independent life. The day the tremors started in my arms, I was almost as hysterical as I was the first time I wet my pants. Thankfully, the hand/arm tremors aren't as constant as the leg tremors.
As much as I've always hated even the smallest amount of pain, having to deal with constant pain is a nightmare that I can't wake up from. Every morning, I wake up with my pain level at a level 10 out of 10, on a pain scale. Some days it feels like 10+. It's so frustrating that I can't even start my day until the pain is at least a 7 or below. Unfortunately, on bad days (every day but there are worse days), my pain has never gone below a 5. On worse days, my pain stays between 7 - 9. Yep, definitely a nightmare but one I have to deal with. Every morning when I have to start all over again, I'm praying the pain management doctor can do something to keep this from happening. I'm choking back screams and tears because my husband thinks I'm whining rather than suffering. This is another debilitating symptom, it effects my ability to function and think logically/rationally.
The first time I wet my pants, without knowing, I thought it was a mistake. The second time it happened, I was outraged and wanted my doctor to fix it right away. Unfortunately, there is no fix but, at least, it doesn't happen that often. It normally happens when I stand or begin walking, however I'm afraid of the day it will happen in bed, especially if it's during a time when my grand daughter is over and sleeping with me.
When the doctor ordered a wheelchair evaluation, he said "to gain my independence back". I was thinking "how in the hell was I going to manage more loss of independence by being in a wheelchair". Haven't I been through enough, fix the tremors so I can drive, walk without pain or falling, and just be normal again. I now see the wheelchair as a way I can get around without the worry of going too far and not being able to get back because the pain and tremors are just too severe. Now I think "Thank GOD for this wheelchair".
My tremors, in all extremities, eventually became wild and totally uncontrollable, like the day I was admitted to the hospital. Since the doctors knew what they were dealing w/I was prescribed a nurse and a bath aide for 4 weeks. The nurse did her evaluation and decided that I needed a bedside commode immediately. She assessed that it was unsafe, regardless of the short distance, for me to try walking to the bathroom any longer. The next day, I had a bedside commode. Again, I was losing more independence. The only walking I did was to and from the bathroom. My wheelchair couldn't fit in the bathroom, so I used two canes and walked as safe as I could, with severe tremors in both legs. Also, when I lost my balance, if I made it far enough into the bathroom, there's also several safety rails I could hold on to. The bath aide showed me how to safely manage my shower. Her recommendation was to add safety rails inside the shower, I already had a shower chair.
Over time, I have developed an entire host of symptoms. Some are constant, some are come and go. No matter how they present themselves, they are all debilitating and depressing at the onset. There are times when I can accept and manage, new or an increase in existing symptoms, without going through depression at all. For the most painful and debilitating symptoms, I suffer/struggle with severe depression before finally getting to accepting, adapting and managing (although all still have a level of debilitation).
I have a hard time struggling with not having the emotional support from my family. Having physical support is wonderful and greatly appreciated but I think, in order to experience a complete acceptance of numerous independent losses, in my case anyway, it would make a world of difference having both physical and emotional support from my family. It would be great to be able to talk to my family about what I'm emotionally dealing with because of this illness. I believe they, honestly, would rather not know.
My family (husband and kids) is always here for me whenever I need anything. My need now, however, includes having someone to be here to listen, understand what I'm going through and how this illness effects me, comfort me and remove the feeling that I'm going through this alone. For this, I go outside my family. I cry alone or I cry in the arms of friends or strangers.
My family views me as this strong person, which I was until two years ago. I can't cry on the shoulders of my loved ones because it's actually viewed as complaining or whining. In reality, it's just who I now am and my way of expressing how hard it is for me to stay strong when I'm in so much pain, dealing with so many, constant or come and go, symptoms and managing the lose of so much independence.
They don't understand how I must be completely overwhelmed and drained from living with so much darkness day in and day out. I'm so tired and weak from everything and all I have the strength to do is cry, alone. It depresses me more because I don't have my family to lean on emotionally.
There was a time when I broke down and just let all the tears and words flow. My husband backed away, across the room, spoke a few words off and on and sat, waiting for me to finish crying and feeling sorry for myself. This (his not being there to comfort me during this emotional break down) only made me feel worse, cry harder and feel more depressed.
I'm not feeling sorry for myself. I've suppressed my feelings around my family for 2 years for fear of having my struggles and loses belittled/demeaned. I always smile and say "I'm fine", because the few times I've tried talking to either of them (husband and kids), I get this look of, "I'm bored, aren't you done yet" or "oh, no, here she goes again with her poor me pity party" (even if the last talk was 6 months prior). Also, the look in their eyes tells me that they will never understand how I feel or what I'm going through. Needless to say, I am truly alone in expressing "how" this illness is effecting me.
Saturday, May 24, 2008
It took over 5 hours (not to mention I slept in later than usual) to feel good enough to get out of bed and in my wheelchair for even 15 minutes. The pain was so extreme and traveled from my back, down my legs and to my feet. When it gets this bad, all I can do is cry.
I finally made it to the wheelchair and joined my husband and my 2 grandchildren in the Living Room for a while. Before going back to bed, I had to go outside on the porch for a bit. Fresh air and great scenery does wonders to refresh the mind. I mainly, only, get out of the house once a week. I look forward to this and will make major sacrifices of days in bed to get out this one day. I get out on special occasion days too.
I came back to bed, rested a bit and then sat up in the chair and joined the ASAP forum for a while. I read and respond to new posts and I don't care that I have to take lots of rest breaks in between time. Visiting ASAP keeps me in a positive state of mind.
Thank GOD my husband came in the bedroom, after I woke up, and provided his daily routine of getting my icepack put on my back and making my caramel macchiato. I was hurting so bad and was so weak, I didn't have enough strength to push myself up with my hands. My husband was able to help and I could use one leg a little bit. My husband is such a blessing for me and has been wonderful during my time of need and all that I struggle with/through daily.
It's these type of daily challenges (taking 5 hours just to get up) I struggle with, that most people (even I once did) take for granted each day. First, I have to make sure I can sit up enough to use the icepack that provides a significant (but very limited) amount of pain relief through numbing the area. Once I have the icepack on, I have to take my combination of meds. As mentioned before, these meds do not take the pain away. It goes from a 10 to anywhere from 5-7 (8-9 on worse days, like this whole week). Before I can even get up, I have to make sure the pain is down and my legs are safe enough (from tremors and/or numbness) to get to a chair or the wheelchair. I certainly don't want to fall, plus I can determine if it's a bathroom or bedside commode day. Today is a bedside commode day.
Throughout the day, once I'm awake, my life consists of rotating from chair, propping on pillows, to laying down. This helps to keep the pain from climbing back up to alarming highs. I eat my meals, spend time with my granddaughter (if my grandson is here, both children), watch TV and take as many naps as I need. When I'm on chair (or wheelchair) rotation, I visit my favorite sites if I'm sitting in a chair or I sit outside a bit if I'm sitting in the wheelchair, whichever I'm up to (mostly the chair). I'll create a separate post on how I determined the best daily routine that would benefit in keeping my pain level to, at least, anywhere from 5-7. Of course, like this week, there's going to be days/weeks where high level pain can not be avoided regardless of a daily routine.
All this typing to keep myself distracted. It's been great, but it's time for me to get back in bed. I hope everyone is having a nice day!
Friday, May 23, 2008
I've tried napping numerous times but I'm only getting 30 minutes at a time, if that. I have visited the ASAP forum because it's very helpful to me. I'm going to try napping again and I hope I get more than 30 minutes this time.
I hope everyone is having a great day and a fun holiday weekend!
Thursday, May 22, 2008
It is true that, with SM, you never know how you'll feel from minute to minute. So, if I feel better later in the day, I'll continue posting on past events, leading up to my current life w/SM.
I NEED A NAP!!!!, so I'm off to bed.
Wednesday, May 21, 2008
I struggled with severe depression from the day I came home in Sept. '06, (I don't even remember the day, it was all a daze once I went to rehab), until the beginning of April '07. Then again in late April, when I was sent for a wheelchair evaluation. Thank GOD, this time it didn't last long. I've also struggled off and on, when either suffering, an increase in current symptoms or new symptoms. It's a constant struggle but now I know I have to accept, adapt and move on with my life.
Once I came home from rehab, Sept. '06, I was in a constant state of depression. All I did was wake up, cry, nap, cry, eat, cry, sleep and cry some more. No television, music or even conversation throughout the day. I talked when my family came home from work, only as much as I needed to. On the weekends, I had the same routine, only more conversation throughout the day.
I had home therapy two or three days a week, for 6 weeks. During that time, I socialized with the therapist and talked about what I was going through. She provided great support and a listening ear. She was kind and provided all kinds of techniques that might be helpful in getting my ability to walk and drive back on track. I tried staying open to all the exercises. We took short walks from the driveway to the porch, each time. I had a constant tremor in my legs (tremor/shake - same thing) the entire time. When nothing changed over the 6 week period, I became even more depressed (I didn't think that was possible).
After home therapy, I had 24 weeks of out-patient therapy. The therapist was great and provided a home exercise program. I rode a stationary bike, walked the halls leaning on his shoulders (while he sat in a rolling chair), exercised using a ball, stepped on colored mats on the floor (in any order) then had a massage and tens unit w/ice, at the end. This was productive but as soon as I got home, I was in a tremendous amount of pain with increased tremors and would spend the off days in bed.
When I was no longer in therapy, I tried keeping up with the exercises and riding the bike but I would become weak, exhausted and would be in so much pain, that it was no longer productive. Not to mention how much time I was spending in bed from the fatigue. I would need a nap after taking a shower so it would stand to reason that the exercise would knock me out for the rest of the day. Halfway through therapy, I became discouraged but I tried to remain hopeful. When it was apparent that nothing would help with the pain and tremors (especially the tremors, so I could drive again), I cried and cried all over again.
During a time when I was engulfed in tears, I received a visit from a nurse w/the long-term disability carrier. She did her exam and was totally shocked at the intensity of the leg tremors (I didn't have them in my arms yet or maybe they had just started, can't remember). She spoke with my husband and then watched me try to walk w/a walker. I talked (through tears) for a while and she listened. Then she mentioned that I needed to get involved with an on-line support group to help me through the grieving process of having to deal with losing so much independence at one time.
I searched the Internet and found ASAP, http://www.asap.org/ then went to the message boards. I never had the chance to tell her that she led me in the right path to finally move from depression to acceptance. For the first few weeks, I only read the information posted in all the forums. After that, I got involved and have remained involved to this day. After reading posts for those few weeks, I started watching TV again. Once in a while, I even listened to my IPOD. Thank GOD, I made it through the worse (6 months) depression in my life.
Tuesday, May 20, 2008
When it's too cold, the leg tremors are totally uncontrollable and last longer than the tremors that normally last 2-3 minutes. I also get continual shivers throughout my spine and it feels really weird to have this happening all day.
My symptoms are mainly on the right side of my body, from my arms to my feet. Recently, the last 2-3 weeks now, I've been having horrible headaches. Actually, I'll discuss all my symptoms in a separate post.
Finally, so far today, the weather is only 75 degrees. There is light and hopefully, these heightened symptoms will begin to simmer down to the normal. Normal, for example, is extreme, high level back pain but the Lyrica relieves the majority of the burning pain and I can at least wear clothes. Now, with this heat, the Lyrica doesn't seem to be as effective and clothes only make it hurt more.
It's a nightmare to have these terrible symptoms on a permanent basis and then in certain weather extremes, have these symptoms become even worse. I guess I just needed to vent about it.
Monday, May 19, 2008
I was measured for a corset (customized back brace) and was instructed not to get out of bed until I received the corset. Of course, this meant I had to use a bedside commode since the Foley had already been taken out. No need to worry about BM's, I didn't have one until the day I was discharged.
There was now a whole new set of doctors, I was even assigned a Pain Management (PM) doctor. The doctors were absolutely wonderful and, with the exception of one nurse, the nursing and physical therapy (PT) staff was very attentive and helpful. This was totally different from the horror stories I had heard, or read about, from people who had been previously hospitalized at Palomar. It's a *great* hospital and, overall, I had no complaints.
I spent labor day in rehab. My family (husband and kids) visited everyday, and once I could drink and eat, they started bringing my favorite Starbucks beverage (caramel machiatto).
Rehab was a nightmare and I had PT 3 times a day. After each session, I had to get an injection (in the IV) of Demerol because I would have burning, radiating pain. Actually, whenever the pain meds, (mostly Neurontin, Oxycontin, Tramadol, Percocet, Lidoderm patches and Flexiril), didn't relieve the pain, I was told to request an injection from any nurse and if I didn't get one I was to report it to the PM doc immediately.
I have an extremely high tolerance for pain meds and a very low tolerance to pain. Did I mention that my mom was told this information when I was 8, or so, years old? I was scheduled for surgery so I had been given the medication to knock me out. Instead of going to sleep, I was in the hall (on a gurney outside the OR) talking to everyone who passed by. I never went to sleep and surgery had to be re-scheduled for the next day. I was obviously given more meds the next day, then I had surgery. I have an entire history of episodes like this one.
Anyway, back to rehab. After 8 days in Acute Rehab, I was released to go home with a walker and a script for a hip kit (reacher and tools to help with putting on clothing and shoes), elastic shoe laces, shower chair and a raised toilet. I also had in-home therapy for 6 weeks and out-patient therapy for 24 weeks. I was still using the corset, per doctor's orders and on all the medication I went home with.
Once all the therapy ended, I was only allowed Oxycontin, Tramadol, Lidoderm patches and Percocet. I could have still taken the Neurontin and Flexiril but I started having severe side effects from both. At some point during the out-patient therapy, I realized that a standard walker wasn't enough because my legs hurt so bad when walking and I would get "drop down" tired, extremely fast. I purchased a rollator (walker w/a seat and a basket) and it was helpful but it took a really long time to get through the store because of all the breaks I had to take due to the pain.
So much for rehab. I still couldn't walk without assistance, and the assistance wasn't all that helpful and caused way too much pain. Not to mention all the falls I had, one caused a fractured ankle and multiple bruises. The pain continued to get worse until it became completely unmanageable.
Dr. Mc was very sympathetic, helpful and prescribed any treatment that he thought would be helpful. He also has an outstanding bedside manner. He's not an expert in the treatment of SM, but in my book, he has done better than any doctor on my team and has been with me, during my struggle, since the beginning. He has told me from the beginning that my problems were all neurological and I believed him. Let me say that a syrinx will and can cause numerous neurological problems. I have several links on SM and on some of the symptoms I have, but I'm not sure how current the information is. However, it was current at one time. LOL
Due to my extensive research, I knew all the neurological dysfunction stemmed from the syrinx that invaded my spine.
- Jan. '07, I was advised to apply for SSDI.
- May '07 (day after Mother's Day), I was in a wheelchair (w/c).
- June '07 I was approved (after appeal) for SSDI, my last day of work was Aug. 28th, 2006.
- July '07, the pain had gotten so extreme that I was getting injections of either Torodol or Dilaudid from the ER or my PCP (a new one - two others left the practice by this time). At some point during this time, I started using an icepack on my back (my daughters suggestion). It helps provide temporary relief from the pain by causing a numbing effect.
- August '07, I was prescribed a PM doc, best move that could have happened at that time. The PM doc I had in Rehab worked out of Temecula which was definitely too far to travel every month. Narcotics require an actual prescription so I see my PM doc once a month. A script can also be faxed to the pharmacy but my doctor prefers to see for himself how things are going.
Sunday, May 18, 2008
We went to see Dr. D, a nurse brought out a wheelchair and I was seen on an emergency basis. She didn't know what to do, why I was violently shaking or why I had an extreme increase in my back pain. She reviewed the MRI report that the nurse said they didn't have when I was desperately calling all week for the results. A time before I knew to get copies but an experience that taught me to make sure the facility mails copies to me. The doctor stated that I had a hemangioma but that it shouldn't cause any problems. She tried contacting several specialists to see who she could send me to as an emergency patient. She came back to the room and told us to go to Dr. Mc.
The *Great* Dr. Mc (his office is located in the same bldg as the MRI facility), an OrthoSurgeon, had reviewed the MRI and had his staff calling the hospital to get a room, before we even made it to his office. Totally Awesome!! He discussed what he believed the problem to be and asked me to stand, which I couldn't do, even with my husband's assistance. The hemangioma that shouldn't cause any problems was large enough, at 1.8cm, to burst through the vertebrae at L4 (lumbar spine - low back) and cause the vertebrae to collapse. He described the surgical plan that could relieve the pain and tremors, then gave us the name of the doctor who would perform the procedure along w/the room number I was pre-admitted to.
I got settled in my room at the hospital. Had all the necessary testing done w/a collection of blood and urine and then a Foley catheter was inserted. I certainly couldn't be expected to walk to the bathroom in my condition, not to mention the fact that I was still scared out of my mind about losing my ability to walk and what was happening with that. I really wasn't even thinking about the surgery that would happen the next day. My husband and kids went home, cancelled work and/or school to ensure they would be w/me before and after surgery. I went to sleep because I was groggy from the meds.
On August 29th, I was scheduled to have surgery in the morning but it was pushed back to the afternoon because the surgeon wanted an MRI of the lumbar spine w/contrast. I called my husband to let him know about the change and was carted off to the MRI station (outside the bldg). With all the meds I was on for the pain (and I guess - anxiety), I thought I was dreaming. The person managing the gurney must have read the look on my face and said "yep, we're going outside for the MRI".
A short while after the MRI, I was taken to OR. I met the anesthesiologist and the surgeon at that time. I had a brief conversation w/the surgeon about the procedure and, of course, an introduction. I wasn't supposed to be asleep but when I felt the pressure from the hammering (they hammer through the bone - OUCH!!!, he missed that part in the explanation) they decided it was best to put me to sleep rather than hear me screaming out. LOL
When I woke up in recovery, my husband and children were there. After the allotted period of recovery, I was carted off to my room. Met w/the doctor, he prescribed the meds (no more Darvocet) he thought to be appropriate at the time, checked to see if the pain and tremors were gone and if I was now able to stand up and/or walk. Well, the tremors were less violent but still there, I still had great difficulty standing and the pain had increased. He advised someone from the staff not to get me out of bed for 36-48 hours. Did I mention that I was suppose to be up and walking around, with no pain, within 4 hours after surgery?
I apparently dosed off because when I woke up, the anesthesia had worn off and they realized just how much medication it would take to keep me quiet. I had a visit, w/flowers, cards, books, etc., from 2 co-workers (my boss and her boss - both great, long-term friends). My family left during this time to eat and rest but came back w/DVD's and player. I was set as long as the pain was under control. Pain control was a continual struggle throughout the day and seemed to get worse by the hour, instead of better.
Later in the day, 2 nurses got me out of bed (uh, oh). I was jerking and dizzy because I kept getting the feeling like I was falling out the wheelchair. Shortly afterward, another nurse came in and asked why I was up. Obviously, I had to be put back to bed.
The next day, the Foley was taken out and I was told I could walk to bathroom, which I couldn't do. My husband came for a visit and asked the nurse how I was supposed to get to the bathroom. She told him I should walk. HaHa!! Anyway, later in the day the doctor came by and told them I was being transferred to the Acute Rehab floor. However, I had a lot of tests and another MRI first because they were trying to find the reason for the pain and tremors, since it wasn't the hemangioma. The MRI showed that I had the syrinx (a fluid filled cyst in the spine) on my spine in the thoracic area (T3-T10) but I was told by the neurologist (Dr. X) brought in on the case, it shouldn't be causing my problems. Gee, where have I heard that before?!? LOL Dr. X then said he would check on me every day (yeah, he meant that he would get paid for saying "Hi, how are you?" each day).
Basically, this was the day, August 30th, the syrinx was found and diagnosed. It would take almost another year before all my doctors agreed that the syrinx was the cause of my neurological problems.
Saturday, May 17, 2008
Mother's Day was absolutely wonderful. My daughter came over and we went to brunch at our annual spot, Fountain Cafe, my granddaughter came along too. It was great to be out for a bit and have such a wonderful assortment of food to choose from. I love having numerous selections. My daughter gave me flowers and other gifts from her and my sons.
The brunch originally started out as, "just the girls", with my sisters and their girls and my nieces who lost their mom (my sister) early in their lives. My daughter, granddaughter and I have gone the last few years alone and I missed the year I was diagnosed because I was still in mourning over the things I would never be able to do again and adjusting to limitations.
After the brunch, I had to go home and take a nap. Later in the day, my husband, son, daughter and granddaughter took me to the movies. We saw a "girlie" movie and it helped that it was a comedy. We then went home and I couldn't wait to get back in bed and rest from the exhaustion and increased pain from being out. However, I wouldn't trade it for the world, instead I would rather spend the next few days in bed recuperating.
As of today (Saturday 5/17), I woke up around 3 in the morning yelling in pain. I was sore all over and had a really hard time getting back to sleep. I finally got back to sleep but was up an hour later screaming out from the pain. I got back to sleep and woke up at my usual time, around 5, as usual, in a lot of pain. For some reason the pain has increased tremendously the last few days. I haven't even been able to sit up on my own in order for my husband to place the icepack on my back. After putting on the icepack, my husband made my caramel macchiato, I took my meds and we watched an old comedy together. I was fighting (without success) to keep from constantly dozing off.
I took a nap after the movie and when I woke up, I completed my daily routine (ASAP, CCI, and WACMA) of support groups. Maybe after my nap I'll post about my diagnosis.
I hope everyone is having a great day!
Thursday, May 8, 2008
My first priority of the day, once I get my pain level down to about a 7, is to visit, read and respond on the ASAP forum. This forum has been such a blessing to me since I received my diagnosis. I was so depressed, all the time. I now visit the ASAP forum for support and it helps me through each day and keeps me from being majorly depressed.
So, stay tuned for the post on my diagnosis. I just need time and less pain to be able to collect my thoughts and stay focused.