FYI: I have an extremely bad memory (I didn't before) so I do go back to previous posts and add or remove information, as I remember things.
Wednesday, May 21, 2008
My Struggle W/Depression
Depression is an evil monster that's very hard to conquer.
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.
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
Hot / Cold
My symptoms get out of control when it's too hot (high 80's and up) or too cold (40's or lower). The last few days, in California, it has been in the high 90's and my spine has felt like it's on fire. I can't stand to have anything, even clothing, touching it. My legs, especially the left one, hurt from my upper thigh to the bottom of my feet. This headache, at the top and base of my skull, feels like someone is grinding an axe in my head. Sometimes it just feels like a lot of pressure in the front of my head. All day, I have a feeling of someone dropping water on me, either on my legs (my feet when I'm sitting), hands or arms.
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.
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
Rehab
As mentioned in the previous post, I was moved to Acute Rehab, on the 9th floor, the afternoon of August 30th, 2006.
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.
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
Trip To The Doctors Office, Hospital Admission and Surgery
On August 28, 2006, after my husband picked me up from work, we proceeded to the doctors office. I was talking to the medical insurance company, trying to get authorization to go directly to the ER but they advised me to go to my PCP first.
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.
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
Update
I am still not able to post about how I was diagnosed with SM (have to collect my thoughts). However, I wanted to provide an update.
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!
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
Long Time Since Last Post
Gosh, it has been such a long time since my initial post. I have been having so much pain and now I'm having terrible headaches. As soon as I'm feeling much better, I will post "How I Was Diagnosed".
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.
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.
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