| Thanksgiving 2009 |
[Nov. 26th, 2009|11:08 pm] |
| [ | Current Mood |
| |  sad | ] |
Oh what a day and I don't mean that in a good way. Well there were some good things but the bad has outweighed it considerably.
Joey had went on up to Don and Sherry's with all the food I cooked except the stuffing which was still in the oven browning. He then calls to warn me that Barbara was there.
I thought OK, I can handle this.
Then in the driveway I drop the whole pan of stuffing on the pavement. That should have been my clue. By time I drove the 5 minutes to get to their house I had a horrible headache that wouldn't let up.
The first person I got a glimpse of when I walked in was Howard and it instantly tugged at my heart. He held his hand up and said Hi Stephanie loudly but very pleasantly. Again it tugged at my heart.
Before we ate he walked up to Dylan and myself and said with a confused look on his face "Is THIS DJ?" Dylan and I both resonded yes. Next Howard said "Dylan I remember you being this high and riding around with me on the 4 wheeler, my my". My heart simply broke right there and then.
I left around 5 this evening even though I normally stay till around bedtime. I could just not shake this sad and sick feeling that I had deep in the pit of my stomach. Within no time at all once home my headache turned into a major migraine. I mean like the worst I have had in years. I had to go into the dark bedroom and just lay. Joey ran and got me some OTC migraine pills. A little bit after I took them I fell apart and started crying. It is now almost 1 AM and I still have more tears coming. My eyes are almost swelled shut.
I have always told my kids that hate is a very strong word when they have said "I hate xyz". I tell them you may dislike them and hate their actions but you don't hate the person. I feel like a hypocrite because I feel I truly hate my own mother. What kind of person does that make me? Not a good one I know that for sure.
I am over our past but I can't shake what she is keeping from me and my kids now.....Howard, my stepdad and my children's grandpa. He is such a wonderful person who has never done anything wrong to us but how can we see him with her refusing us? We tried to make amends and invited her up to see Bre probably about a year and a half ago. We were told she would think about it and we never heard another word. I will not beg her anymore. I have begged too much in my life. But the crazy thing is if it would bring Howard back into our lives I guess I would beg. He is that important and he is not well at all. He can't even get around without a cane anymore and he was always so active. It will kill me if he passes away and things are as they are now but what can I do to change them?
I have prayed for God to show me what to do and how to do it. This is bigger and more emotional than I can handle on my own. |
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| Links and more info about MVP-D |
[Oct. 20th, 2009|05:59 pm] |
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http://www.mitralvalveprolapse.com/home.html
MAJOR SYMPTOMS
Fatigue: One of the most common symptoms In MVPS/D.
Chest pain: A frightening symptom. Along with panic attacks and heart palpitations, chest pain is one of the main reasons people rush to the emergency room.
Palpitations or irregular heart beat: When you have heart palpitations, they can make you feel as though your heart is not beating properly. Note that whether you describe the palpitations as "flutters", "flip flops," or skipped heartbeats," they all fall into the category of palpitations.
Migraine headaches: Research undertaken by the University of California at San Diego found that men and women with MVPS/D have a greater tendency to suffer from headaches than the normal population (Ford and Ford, 1996).
Anxiety: Generalized Anxiety Disorder (GAD) is the name for feeling much more anxiety than the amount, or degree, of anxiety that most people experience in their daily lives. When you suffer from this disorder, you are almost always anticipating disaster.
Depression: This should not be confused with the occasional feelings of unhappiness that everyone experiences now and then. With this sadness the moods lift, and people continue being able to function. Clinical depression does not get better for months, sometimes years, if you do not receive medical help.
Panic attacks: For some time it has been well documented that there is an association between MVPS/D and panic attacks. The MVP Center in Birmingham, Alabama, found the incidence of panic attacks to be present in 60 percent of their patients who had been diagnosed with MVPS/D.
(Lyn Frederickson, 1992).
Shortness of breath: People with MVPS/D are often out of shape because of their low energy levels. This is very much a vicious cycle, because the poorer your condition, the lower your tolerance for any kind of activity. You may notice your heart rate increases greatly with minimal exertions, and you become short of breath. Exercising regularly will alleviate this symptom.
Arm and leg aches Shakiness Swelling of arms, hands, legs, or feet Difficulty sleeping Backaches Intestinal or stomach trouble Difficulty with urination Numbness in any part of the body Aches or pains in hands or feet Fainting spells Excessive perspiration or inability to perspire Trouble with eyes or visual disturbances Skin trouble or rashes Muscle fatigue or weakness Dizzy spells Twitching muscles Poor health in general Excessive gas Bowel trouble (constipation or loose bowels) Hay fever or other allergies Trouble concentrating or memory problems There is also a greater incidence of the following in patients with MVPS/D:
Scoliosis, curvature of the spine
PMS
Fibrocystic breast disorder
Endometriosis
Thyroid disease: Dr. Phillip C. Watkins, director of The MVP Center n Birmingham, Alabama, states that they see about a half a dozen MVPS/D patients every day that also have a thyroid disorder.
Fibromyalgia
Pectus excavatum; also known as sunken breastbone
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| I think we may have a winner |
[Oct. 20th, 2009|03:02 pm] |
I think finally by the Grace of God I found what I have during an internet search last night!
Mitral Valve Prolapse Syndrome or Dysautonomia.
I have had MVP since I was 16. It is just part of my daily life. I have taken the same type of medicine since my DX. For years I thought nothing of it, I would pop the pill in my mouth every morning and go about my way. The only time I would be reminded that something wasn't right was when I would forget the pill and believe me that didn't happen very often. I also knew I needed antibiotics before any surgery or dental work so infection wouldn't set up in my heart. I made sure I received my flu shot every year even when there was a shortage cause the flu can really do a number on someone with MVP. Occasionally I would go through a rough patch when the weather changed from warm to cold but overall it really didn't affect my day to day living. That is why I never considered it could be the very thing causing my illness now.
Over the past week I have gotten much worse when a new symptom appeared. My heart had started jumping, flip flopping, beating too fast then would feel like it wasn't beating fast enough. That along with major shortness of breath has been a huge issue.
I thought "great now my MVP is acting up cause of my neurological problems". When as a matter of fact it could very well be my MVP causing the neuro problems.
For the past week I kept my mouth shut cause I couldn't stand the idea of admitting yet something else was wrong. I never even told the pain doctor last Friday cause I just couldn't bring myself to be 'that' sick. Plus I knew if I complained of heart problems then I would need another doctor and yet more tests. So last night I sat down with my lap top and searched for MVP even though I thought I already knew everything about it that I needed to know. I swear it was like divine intervention when the very first page I clicked on contained info on MVP Syndrome. A light bulb went off! That page then lead me to search MVP Dysautonomia and I sat there with my mouth hanging open as I read page after page describing ME.
MVP-D can cause a variety of ailments that send the patient from specialist to specialist looking for an answer. Dysautonomia is a defect or problem with the autonomic nervous system. From what I have read it is sometimes brought on following a viral infection. I can not count how many times I have stated that I have not felt the same since I had a staph infection two years ago. It is like I never got over it and just bounced from one issue to another. The thing is the issues never seemed related-till now. I even found info last night stating how MVP-D can cause anxiety and depression and has even been misdiagnosed as......bipolar! Wow! To be able to think even for a second that I may in fact NOT be bipolar is huge for me. I also read a blog in which the woman talked about how she didn't have MS after all. This is huge also cause I had pretty much made myself accept the fact that I might spend the rest of my life living with MS.
Now I am going to try and list my symptoms or problems from the past two years. Be warned this list will be anything but short and sweet...
aches and pains, electric like shock pain in the back, shakiness, sleeping issues (even not sleeping at all or wanting to sleep all the time), stomach trouble (I have never admitted to this either cause it is embarrassing), urination issues (even can't go or have to go all the time), numbness in arms, legs, hands, and feet, excessive sweating to the point of soaking my shirt even though I was shaking from being cold and had goosebumps, not able to control my body temp (made me spend this summer indoors), dizziness, eye pain, blurry vision, eyes twitching, muscle weakness, fatigue, twitching muscles, concentration issues, muscle cramping (not normal charlie horses, instead it feels as if someone is reaching in and twisting my muscles with all their might), walking and coordination issues, and memory problems
Now for the part that I write about but I keep very private-mental illness
I have suffered with severe, life altering, life threatening depression. I have a DX of severe anxiety disorder and bipolar type 2. Out of everything this has been the hardest to accept. I hate being labeled as mentally ill. It makes you literally feel crazy, no pun intended. I was a walking pharmacy for a time but do have it under control now and am only taking two medicines a day to manage it.
There are other symptoms that I have lived with for many years and just thought that was the way I was. I have multiple allergies to environmental agents and antibiotics, daily headaches, fibrocystic breast disorder, and TMJ (temporomandibular joint dysfunction). After much reading last night I now know these are also symptoms of MVP-D.
It is unbelievable that one condition can cause all of this but it seems as if it is possible. So tomorrow I have an appointment with my primary doctor. I am going in armed with this info and demand to be referred to a good cardiologist in St. Louis and go ahead and see if I can be hooked up to a heart monitor. There is no cure for MVP-D, you just manage the symptoms. I am sure I will still need my neurologist to manage the neuro problems. I probably will also have to continue with my psychiatrist to make sure we stay on top of my mental illness. But for the first time in months I feel validated and that it isn't all in my head.
I will post some links here leading to web pages that discuss MVP-D and Dysautonomia in general (yeah there are different types, still learning). I need a page with all this information for myself and so I can share it with Joey cause without him in my corner I don't know what I would do. |
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| No wonder it hurt! |
[Oct. 16th, 2009|06:42 pm] |
I am still in so much pain from the epidural. My whole back aches and walking is difficult because of it. While sitting here I thought I would look up the procedure that was done on me earlier today. Maybe I shouldn't have. Here is the link to one site
http://www.spineuniverse.com/displayarticle.php/article1177.html
This states that it is a surgical procedure that is done in an out patient clinic. An IV is started for pain and relaxation meds. Also a patient is suppose to remain in a recovery room for up to an hour then to be driven home by someone else (if Christy hadn't been close by I would have driven myself, I didn't know better).
No wonder it hurt so bad-it is minor surgery and all I had was a shot to numb the area! Needless to say I will NOT be going back to this doctor and I really did like him. |
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| OMG, now I know what real pain is! |
[Oct. 16th, 2009|11:43 am] |
Let me start by saying I have been in labor nonstop for 16 hours before, have had 2 c-sections, one spinal, and a tumor the size of a softball that swallowed my ovary removed. But I have never, ever, ever experienced pain before like I did earlier today.
I went back to see the pain doctor today. He said my latest MRI showed a slight bulging disk that might be causing the pain (but not the other neuro problems). He offered to do an epidural on me to inject steroids and pain meds directly into my back and spine. I thought about it for a bit and decided I would give it a try cause I have been in so much pain the last two days. Stupid me thought OK I have had a spinal before and it wasn't THAT bad, I can handle it. So there I am sitting on the table clutching a pillow waiting for the 'poke'. I can not even begin to describe the pain that followed. I had tears rolling down my cheeks and was actually crying out in pain. After it was over the nurse or nurses, I had two with me nonstop cause of my reaction, said my face was totally white and my blood pressure was down to 80 over 40. One nurse kept telling me to lay down and I kept saying I didn't want to cause I actually was afraid if I did I would faint. I finally done as she wanted and then I was hit with instant pain in my chest. Any pain I have that goes on for a bit affects my mitral valve prolapse. That is another reason why I tried the injections, my heart has really been acting up this week and I know it is from the pain. After quiet a bit later I was allowed to leave once my vital signs became more normal. I called Christy to ask if she could pick Marcus up from the bus after school. Luckily she was only a few minutes away and had her cousin with her. They came to me and she drove me home as her cousin followed in her car. Once home I had Dylan place an icepack on the injection site but I hurt too bad to lay down so here I sit.
I may have cleared all the doctor's schedules for the day. When I walked out I looked awful. I could hardly walk cause each step hurt and I was holding back crying but still had tears streaming down my face. The waiting room is usually empty but today it was packed and every set of eyes were looking in my direction as I made my way to the elevator. I know if I had been sitting there waiting to be called back and I seen someone who looked as rough as I did, I probably would have ran thinking these people are not touching me if this is what you come out looking like!
The pain doc is referring me to a neurosurgeon cause he thinks I may need back surgery for the disk. Between possibly needing major surgery and the undescribable pain that I went through today I am in a major pity party filled with "Why Me?". Plus the doctor said usually a person needs 2-3 sessions of what I went through today to get maximum results. Pardon me but there is no way in Hell I will ever go through that again unless I am under the influence of some major drugs! |
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| (no subject) |
[Oct. 6th, 2009|03:52 pm] |
I had an appointment with my neurologist last month. I believe he is a good doctor but I have him stumped. He even went as far as to test me for Syphilis cause it can cause nerve damage (I tested negative in case any one is interested). He keeps coming back to MS cause of my symptoms but he can't prove it or disprove it as of now.
Last week I had a visit with a pain doctor. That was a tough one cause by going there I felt like I had to admit to myself that I might be really sick. Only people with chronic conditions need a pain physician, right?
He done eight injections in my neck cause it was so tight. I don't have neck problems but I tighten up from the back pain and it is affecting the muscles in my neck now. Sort of like a snowball rolling down a hill, the problem just gets bigger and expands all the time.
There isn't a whole lot he can do for me cause nerve damage is tricky to treat but I liked him and he made me feel validated in my pain. He said his mom has MS and it took years to diagnose. During that time she had doctors not believe her when she claimed she was in pain and something was wrong. I felt like he got it, understood what I am going through.
Based on my symptoms he too suspects I have MS and that it simply is to early for it to show up yet. He ordered another MRI to be done on my neck and the very upper part of my spine. That is the one area that hasn't been scanned. I go for it Thursday then back to him Friday.
I was doing somewhat better then it all came crashing down on me. The other night I was in so much pain, the regular shocking/burning pain between my shoulder blades but I also was having nonstop leg cramps. It felt like someone was reaching in and twisting my leg muscles. Plus I couldn't go pee. That is so frustrating! You know you need to go, feel as if you have to go, but simply can't go. I started that around 9 PM and finally went around 3-4 AM. Needless to say I didn't get much sleep that night.
Joey is great through it all though. He is so supportive and never makes me feel like a burden or too much trouble. The boys are also wonderful. If I have to be ill at least I have been blessed with a caring family. |
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| More Testing and Swine Flu |
[Sep. 2nd, 2009|08:27 pm] |
I had more testing at St. Louis yesterday. They done another MRI with dye to check for any changes in my spine such as the lesions you get with MS. By the time that test was done I was in so much pain and so stiff that I could not get up off the table by myself. I had a sweet tech who helped me up and took care of me. Next I went for another round of nerve conduction testing. There is no nice way to put it-that shit hurts! The tech 'shocking' me was very nice and considerate but it is still painful. When I get in a lot of pain my skin turns cold with goosebumps sometimes. My legs were so cold that he kept placing a heat lamp on me before he could do the next round of shocks, something about cold skin doesn't respond to the testing right. After that a doctor came in to finish up. She stuck needles into my muscles to check their response. This time hurt worse than in Memphis. She seemed like a very capable doctor but she really 'dug' into my muscles. Like when I had a needle positioned on the front of my ankle she then pushed down on my foot while having me push up. All I can say is OUCH! I actually have bruises today. One weird thing happened though. She was getting ready to stick one in my lower back / hip area and I was thinking oh man this is gonna really hurt. I didn't feel a thing though. She kept asking me if I felt it while she wiggled it around and pushed it in deeper and I never felt it.
I go back next Tuesday to see my doctor and find out what all the bloodwork and tests have shown. My pain was actually a good bit better till I went through all of that yesterday. I ached, twitched and had spasms all the way home and now I am hurting like crazy today.
Now for the paranoid mommy part of me.
The swine flu is going around school. As a matter of fact a girl in Marcus's class has it. That is seriously freaking me out. I am so scared that Marcus will catch it. Of course all you hear about is how deadly it can be if a person's immune system isn't perfect. Overall he is weak right now from the flare up of his fibro then the broken bone that he has.
To me his school isn't doing all it should be doing. They have not even sent out a letter addressing the issue. At Bre's school they are checking temps every single day and all the kids are drinking out of their own water bottle, no more fountains. I picture all those kids at Marcus's school putting their mouths on the water fountains and I shiver. I told Marcus to only drink bottled water for now while he is at school. I am hovering over him worse than usual. That poor child has been through so much illness in his life, I can't help but worry. |
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| CrappyPart 3 |
[Aug. 22nd, 2009|03:45 pm] |
| [ | Current Mood |
| | crushed | ] |
On top of everything else my precious cat is missing.
She ran out the door yesterday morning as Dylan was carrying in groceries. I didn't think much of it cause she always hangs out closely in the front yard. That was around 10AM yesterday and more than 24 hours later she has yet to show up. Marcus took the four wheeler out looking for her in the woods behind our house as well as the ditches up and down the busy road in front of us. There was no sign of her. I am just heartbroken. I have had her for years, raised her from a kitten. I talk to her on and off all day. I miss her. |
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| Crappy Day Part 1 |
[Aug. 22nd, 2009|01:59 pm] |
The last two days around here have been pure shit. There is alot going on with Dylan but I will do a private post about that. First about Marcus.
Marcus and his friend C have been fighting. I thought they were just kids with different opinions that happened to be growing apart. Yesterday as they were walking from the school bus C had his head hanging down and Marcus was just a talkin and smiling. Crazy me I thought oh good they have made up. No such luck. To find out Marcus was mouthin to C all the way to the Jeep. After we got home I decided to let Marcus have it. To find out they had even been in a shoving match at school. At their school if a fight breaks out they can be suspended for a few days with all zeros for grades. The juvenile officers can also be called. That means that my 11 year child could end up with a record or be placed in a juvenile detention center. His father had that kind of record but over my dead cold body will that happen to my child! So I let Marcus know what could happen in a juvenile center. I told him he has lead a pampered and sheltered life. The kids in a place like that would pick his bones clean the first day. Also that if he gets in a mess like that then there is nothing I can do. The talk lasted for quiet awhile and after I left the room Marcus called C to apologize.
I hope this is one mess that is worked out cause I am freakin tired! |
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| (no subject) |
[Aug. 5th, 2009|08:40 pm] |
I finally seen a doctor today that wrote me a script for pain medicine. He told me I had to see only him, get the script filled at the same pharmacy every time if possible, and consent to drug testing to make sure that is the only drug in my system. He said that way he can keep a close look at how much I am taking and keep it controlled. All of which I have no problem with. I am not a junkie looking for a fix, I truly am in severe pain and need help controlling it.
The pain has been awful the past few days. Last night I was really considering going to the ER just for pain control. I would have went if I knew I wouldn't had to have waited five hours to be seen. The pain is taking over my life. I spend the evenings and night curled up in a ball trying not to cry. I have peeled so much skin off of my fingers and bottom lip. I 'pick' at things when I am in severe pain and trying to distract myself. By this morning I had open sores on my fingertips.
I also have to blog about my latest run in with mother.
Today of all days I seen her.
The doctor I went to is part of a clinic practice that has a bunch of doctors. I was already sitting down waiting to be called back when I seen her walk in. It did shock me cause even though she sees doctors for a past time I never knew of her seeing any at this certain clinic. Anyway I was sitting on the back wall and here she came. I waited till she was about 5 chairs down from me and I calmly got up and went to the restroom. When I came back I sat against another wall, in a corner, away from her.
I actually think she was going to sit by me! There are plenty of places to sit that were no where near me but she was heading right in my direction.
Joey had ran to the courthouse to get a personal property tax receipt so we could go and get new tags and pay the sales tax on his new truck and his mom's car. By time he got back to the clinic she had been called back. When I told him about what had happened he said "I thought I recognized her". I asked WTH did he mean....he had walked right past her in the parking lot but didn't realize it was her till I said something.
Long story short we ended up seeing the same doctor and were across the hall from one another. I just played it cool and never looked in her direction.
Over lunch Joey and I were talking about the whole mess and he sees things exactly how I do. She has rejected Bre not once but twice so that is just flat out the end of it. She rejected her before we even adopted her. Then awhile back Joey called mother and asked her if she would like to come and meet her granddaughter....she never showed or even called back.
I have zero use for her and can't even stomach a polite nod anymore. |
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| (no subject) |
[Aug. 1st, 2009|04:14 pm] |
Last night I hurt so bad! For once nothing was numb so that is good but geez did the pain ever get old real fast.
Usually when I hurt it is just in my upper back between my shoulder blades. Not last night, everything hurt from the waste up. Neck, shoulders, arms, and my entire back. I finally caved and took a pain pill, the first one in over 2 weeks.
Nothing more really to say. Just needed to vent a minute is all. |
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| Better Doctors |
[Jul. 30th, 2009|07:29 pm] |
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I was seen by 2 different neurologists in St. Louis on Tuesday. All I can really say is that is what I expect when I travel 2-3 hours to see a specialist.
I was thoroughly examined and the visit lasted around an hour. They agree that I have nerve damage but now they want to know WHY and what can be done to fix it, reverse it, or at least help me live with it.
It comes down to four different possibilities.
#1 I have some sort of auto immune disease
#2 There is a large nerve that runs around your hip, down your leg. Mine may be pinched.
#3 A vitamin deficiency of B12 (my past results were in the very low normal range)
#4 Multiple Sclerosis
I had 11 tubes of blood drawn to check for many different diseases as well as my B12 level. I have to do a fasting blood test around here to check my sugar. They also want me to have a sleep study done to make sure I don't have apnea since I suffer from frequent headaches. I personally think the sleep study is a waste of time but I will do it just because I believe these doctors are really trying to get to the bottom of it all. I also have to go back to SL to have another MRI to check for any pinched nerves as well as spinal lesions caused by MS. Even though my MRI has been normal in the past they said sometimes it takes awhile for MS to show up. They ordered more nerve conduction testing, uhh, that really hurts and I dread it. I was also put on a new medicine that is suppose to help control nerve pain. I just started it tonight and probably won't see any results for a week or two.
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| Shopping and Medical Records |
[Jul. 24th, 2009|09:01 pm] |
Took all three kids shopping in St. Louis for two days http://penningtoneverafter.blogspot.com/2009/07/back-to-school-shopping.html
I knew I didn't feel like going but it is something that had to be done. It was really the only chance I could see us getting while Joey is home cause I go to the neurologist in SL on Tuesday, Dylan has a concert in SL on August 3rd, and Joey wants to take them camping once more before school starts Aug 18th.
I actually done better than I expected. My main issue besides getting tired real easy was the top portion of my right leg becomes numb any time that I walk on it more than just across the room. Walking with a numb leg is not simple. You have to concentrate on each step. I have had my leg go numb from the knee down to the tips of my toes also. All I can say is I will take from the knee up any day over from the knee down.
We left early Wed morning and hit one mall, stayed the night then tackled another mall the next day. There is no way I could have done all of it in a day. This was just another time that I was reminded that I am sick. I used to could shop all day and the only thing I had to do was maybe change shoes halfway through. (I'm weird, I can change shoes and my feet stop hurting). This time I was sitting down every chance I got and I know I held everyone up with how slow I walked. Hell I had old people whizzing around me cause they didn't want to walk behind me.
The important thing is we got it done though so I have a couple of days to take it easy before heading back to the city to see the doctor.
I'm going to bitch a bit now about the fires you have to jump through in order to get your own medical records.
When I was going to see the doctor in Memphis I had to go in person to the hospitall in St. Louis and the one in Cape in order to get copies of my medical reports. They would not release them to Joey or mail them, it had to be in person. So we drove all the way to SL and stopped back by Cape to get all the paperwork.
Now I have an appointment in SL. It will be the first time I have been seen at St. Louis University so once again I am trying to get all my records together. My primary care doctor faxed a request to get the records from Memphis and they received them. Today I called asking for a copy of that and they refused to give them to me. I was told they can not release 'secondary' records to the patient and I would have to get them from Memphis myself. Well of course Memphis will only release them to me in person and I am in no shape to make a quick trip down south for some paperwork that is in my doctor's office only 10 miles from me. So guess what they will accept though....a phone call from SLU requesting the records! Once they received the phone call they faxed them to SLU. This is crazy, my records are released to some stranger in a medical office but not to me personally!
These records are so important cause I do not want to have to repeat those tests. One of them was shocking me in many places to test my nervous response (that hurts BTW). Another was stabbing a long needle into my muscles to test their response also. Then there was a brain wave test where they stuck a glue substance all over my head then hooked me up to electrodes. Nope, I'm in no hurry to repeat any of it. |
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| Stupid Me |
[Jul. 13th, 2009|08:04 am] |
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| |  exhausted | ] |
It is now around 8 AM and I still haven't went to sleep from last night.
I had been feeling better, not good but better, till yesterday evening. Since I was feeling better I took advantage of it and guess I overdone it this weekend. It is very frustrating to say the least cause it isn't like I took the kids to Six Flags for a couple of days. All I done was take them to a couple of movies, out to eat, and to rent movies and video games. I believe what done me in though was I cleaned Bre's bedroom and bagged up a bunch of toys. This girl's room was a mess! Marcus and I filled two 13 gallon trash bags and a box full of toys plus threw away another trash bag of broken toys. There was also 2 ride-on toys, a huge bag of blocks (for a baby), and a potty chair. It is all now in the back of my Jeep waiting to go to it's new home. I was amazed that all of that came from her room!
After this load of laundry is done I guess I am going to try and go to bed while both boys are asleep and Bre is at school. |
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| Life |
[Jul. 7th, 2009|10:59 pm] |
Life right now pretty much sucks.
Marcus is having a flare up with his fibro. I took him to see his ped today and as always all he has to offer him is pain medicine (at least he can get it). I hate seeing such an active child reduced to hardly walking and frowning from all the pain.
He is such a sweet child. Even though he is in pain himself he is constantly asking me if there is anything I need or anything he can do for me to make it easier on me. He melts my heart.
I wanted him to have a good Fourth of July and knew I couldn't provide it myself. I called my good friend Terry who is the mother of one of Marcus's bestfriends and asked her if he could join them in their fun. She welcomed him with open arms. They had two days of Fourth fun and Terry took the pictures to prove it! I posted SOME of them on our family blog.
It hurt to know I was not the one with him on a holiday but I simply am not able to do very much these days cause of the pain and other weird problems that go along with my nerve damage. I wasn't worried about Dylan cause at almost 16, he makes his own plans quiet easily. He ended up staying home and shooting off fireworks with a couple of friends. Then of course there is Bre but she is still too young to realize that she is missing out on anything. Marcus was my only concern and I am so happy that he had a good time.
Now for how am I doing? First of all I know everyone means well and I am glad they are concerned but I am so tired of hearing "How are you doing?" at the start of every single conversation. It reminds me that I am sick and I hate that! I don't have 'good' days. I have bad and worse days. Just because I am out grocery shopping doesn't mean I am doing good. It only means that I am a mom and my kids need food in the house. Again I know everyone means well, I just hate being this way.
This evening has been really rough. My entire back, neck, chest and shoulders hurt. The pain is unlike any pain I have ever had before this happened to me. It is concerning me some cause my chest feels tight and there is pressure plus it is hard to take in a deep breath.
A 'friend of a friend' knows someone that has all the same symptoms as I do and within a couple of months they were in a wheelchair. Scary shit I tell ya. I mean I am 35 years old and have 3 children that need me. Not to mention my poor husband. He didn't sign up for this kind of drama when he married me. Of course you know each other are going to get sick or have issues over the years but not something this big this soon.
I will admit I am taking it easier than I probably have to but until I get the see the neurologist in St. Louis I am scared to overdue it. I am afraid of causing more damage. Maybe that isn't how it works, who knows. The doctor in Memphis sure didn't explain anything to me that is for sure. I am just scared to death of ended up disabled for life. I can't wait till I get to the clinic in SL, maybe they will answer all my questions and help me.
In the mean time I am still ticked off that my doctor will not give me nothing for the pain. I have family that are addicts. I have a nephew that died with OxyCotin in his system. I am not stupid and I am not irresponsible. I guess if I run out of what I have I will go to a near by town that is known for it's doctor's willing to prescribe whatever. I feel the least my doctor could have done was referred me to a pain management clinic. |
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| Ticked and Offended |
[Jun. 30th, 2009|08:32 pm] |
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That is what I am, ticked off and very offened.
I went to my regular family doctor today wanting something to help with the pain till my appointment in St. Louis next month. He wouldn't give me anything! Now keep in mind I have been seeing this doctor for over 5 years and have never asked for pain medicine before today. I was treated like some junkie. If I was a junkie I probably would have walked off with a script for Oxycotin but since I truly need something to help me cope, I got squat! |
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| Stoned |
[Jun. 29th, 2009|08:21 pm] |
I feel very much stoned from taking my pain medicine so if this doesn't make sense...well that is why.
Last night was miserable.
I didn't take anything for pain all day cause I was here alone with the kids and I hate feeling out of my head when they depend on me to be mommy and take care of everything. Once I laid down in bed I knew it was gonna be one of 'those' nights. I soon got back up and took one pain pill. I stayed up for awhile and watched TV. Laid back down and the pain was just too intense to take so back up I got and took another pill. It sucks, if I only take one pill then it does nothing for the pain. But when I take two it produces this stoned, out of my head feeling. Anyway I am safe in saying I slept NONE last night. That makes for such a long night when you just lay there awake and in pain.
The numbness is getting worse. If I sit in one position for more than a few minutes then everything starts to go numb. Before I got out of bed today my whole right arm was numb and so was my left leg and foot. When I do sleep I wake up several times throughout the night with different body parts so numb it hurts.
I have an appoinment with my family doctor in the morning cause I am out of pain medicine. I hope he can give me something to help but without making me feel this way. |
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| More Info |
[Jun. 24th, 2009|10:10 am] |
I went to see my psych this morning for my 2 month check-up. Mentally everything is going well. I told him about my physical problems and he gave me a ton of information compared to the neurologist that I seen in Memphis.
His first piece of advice was to not fool with Memphis but to get back to St. Louis, the best would be Barnes's Hospital. He also told me that peripheral nerve damage can be a huge deal. He said it is basically MS but worse cause with MS you get the remission periods. With PND there is no remission, it just keeps on going. In the worst case you can end up in a wheelchair or on an artificial breathing machine, so take the disease very seriously. |
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| Waisted Doctor Visit or Not? |
[Jun. 23rd, 2009|08:51 pm] |
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That is the question.....Let me start by saying I was not impressed by my doctor in Memphis-at all!
This is how my appointment went.
The doctor hardly spoke to me. Asked me to raise my arms in the air and to walk back and forth across the room. He then ran his hands up and down my back.
After that (cough, cough) thorough exam he announced I have 'peripheral nerve damage', and migraines not MS. I think great, wonderful I don't have MS but what is peripheral nerve damage? When I asked this question I was told "oh you just have some damage to your nerves". He then sent me on my way to have a nerve conduction test and brain wave pattern test done. That was my visit in a nutshell. He made me feel like what I have is no big deal at all. I left feeling like I am some drama queen and depressed.
Once I got my ambition back today I started researching. Peripheral nerve damage is and can be a huge freakin deal! On one sight I read that PND is MS without the spinal cord scars or the remission. With MS the disease goes into remission, with PND it doesn't, it only gets worse if left untreated.
In order to treat PND you must find out what is causing or caused it. In many cases it is diabetes (I have been checked). It can also be anything from cancer to the mono virus, Lyme disease, to hereditary diseases. The only way to stop it from getting worse is to treat the core condition. If left untreated a person may become paralyzed or end up with a breathing tube to survive. If treated though all the damage may be able to be reversed as nerves can heal themselves.
What I need now is a doctor who is willing to get to the bottom of this.
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| Crud |
[Jun. 19th, 2009|07:29 pm] |
I feel like a big ol pile of crud today.
My body has been 'buzzing' and tingling all day, yet something new for me.
The pain has been with me constantly. It just moves around from place to place.
OK, I will quit bitchin now....... |
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