by Band Back Together | Oct 8, 2010 | Anger, Caregiver, Chiari Malformation, Chronic Illness, How To Help A Friend Whose Child Is Seriously Ill, How To Help A Friend With Chronic Illness, Marriage and Partnership, Marriage Problems, Migraines, Pain And Pain Disorders, Pediatric Caregiver |
Yeah. . . I don’t really know what I’m doing, but I have things to say (ed note: if you have things to say, you belong here), so here I am.
First of all, I am not the one in pain, so if you are reading this and you are and you want to tell me to shut my big fat mouth, because I don’t know what the hell I am talking about, feel free. However, the two people most dear to me suffer from chronic pain, and there isn’t a damn thing I can do about it.
Sure, I can provide comfort and try to make life a little easier, be sensitive, kind and gentle, remind my loved ones to take their medication (even though my husband’s on so much dope, it’s turned him into someone I don’t even know and I hate that). But beyond that, I feel helpless.
My husband was diagnosed with RSD (Reflex Sympathetic Dystrophy) in late 2004-2005 – 6 months after a “mundane” farm accident and three mother f-ing months too late for him to get the aggressive treatment he needed. He had a spinal cord stimulator put in that was supposed to “mask” the pain. Ha. The pain affects his right foot. He says it feels like someone poured gasoline on it and lit a match. Chronic depression has ensued; he was suicidal for awhile. AND THERE WAS NOTHING I COULD DO TO FIX IT!
Meanwhile, in 2008, our daughter began to have chronic headaches. Not just ordinary ones, but the kind with tons of pressure in the back of her had. She began to have dizziness, trouble with balance, nausea, vomiting, blurred vision. I thought it was PMS. (She’s thirteen now).
Really, PMS, dufus?
Yeah, well, turns out she has something called a Chiari Malformation with syrinx, which required surgery. . .on our baby. . . near her brain (duh, that’s why they call it neurosurgery). AND THERE WAS NOTHING I COULD DO ABOUT IT! Risks, yes. Would her headaches go away? Probably not, but she might be able to continue to have the correct use of her extremities and bladder if successful – a plus for an adolescent.
Now, in 2010, my husband is still in pain every day. He can’t walk. Our daughter wakes up with a headache every single day. I hate to see them in pain.
But, they are still with me. Our daughter has a relatively normal active life. Thankfully, the syrinx has significantly diminished – which is awesome and huge. We have each other. I know that I have so many things.
We live on a farm, so I’ve learned about taking care of livestock and how to charge a car battery and do a little work on a four-wheeler. I can cut wood to heat our home if necessary. I can shoot a gun. A country girl CAN survive, after all. I’ve learned I can be stronger physically and mentally than I’d ever thought. I’ve learned how to talk to doctors and ask questions, even if the answer might rip my spleen out. My heart has been broken so many times that I wonder if I even one left.
Most days I am thankful for the blessings we have.
Some days, like today, I’m angry as hell.
by Band Back Together | Oct 7, 2010 | Coping With Losing A Friend, Friend Loss, Grief, Help For Grief And Grieving, Hospice, Ovarian Cancer |
my friend is dying
of cancer
a friend. a cyber-friend.
we met 4 years ago on a grief site, called “beyond indigo.” there were about 5 or 6 of us who all came on at the same time, and we were a nice, tight little group. (these internet sites can be great…in the middle of the night, when you feel awful, someone may be on. even if no one is on, someone has written about feeling as awful as you…helpful. very.)
she is very spiritual. she follows the sufi path. she told us all in a post about an “ancestor ” shrine, so i made one for tom. and while it is mostly dismantled now it helped me. it was such a wonderful idea and i learned and grew from it.
anna’s loves name was ishaaq, and he led groups, and loved life, and was gorgeous. they played and sang together at their meetings (i am probably getting terminology wrong here, but it does not matter) he, and she, both seemed so wild and free to me. and that’s in a spiritual sense. there were problems. he had diabetes, and died from complications of it. she has major vision issues, which have left her disabled, and yet anna is a remarkable artist.
it just comes from within her. she is a shining spirit, to me, to many people. she dreams of ishaaq, and they are beautiful dreams. she never thought my “winks” were silly. i’m grateful to her.
here’s one of my favorite anna facts: many people in her religious tradition seem to take new names. she has a friend who posts on FB as Shaqeena Nonofyourbeeswax. (again, i may be a little off, but you get the picture). that is a cool friend. anna is cool.
she’s dying.
i guess, in reality, we all are, but she is, in reality. she has ovarian cancer. she had an operation and chemo, she was doing well, and now it’s back. and faced with a decision of more chemo and shitty quality of life, she chose hospice and pain management and, quite possibly, another lovely year…another walk around the sun.
(i now wish something that anna taught me to people for their birthdays….”a wonderful walk around the sun”)
you really can just be friends online these days. we’ve never met, but we have a connection. we do talk on the phone, and i’m always glad when she calls. it breaks my heart that she has to go through this. it makes me so happy that she has the friends that she does who do, and will continue to, support her. i think that her spiritual tradition is amazing about death, about crossing over and about soul-mates and eternal life. when she called me to tell me she said “i’m going to be the first to see my soulmate”…i knew what she was saying. in that instant i felt happiness for her.
i felt jealous of her.
i know anna is facing some rough times. i know she will get help from hospice and her friends, family and religious family. when she makes her transition she will be “handed off” into the arms of her beloved ishaaq. and her friends will be sad that she’s gone, that her gentle, creative and loving spirit has left this world.
i will be too. i’m her cyber-friend.
one day we’ll meet, on another plane. maybe she’ll be there wearing one of her incredible dancing outfits and she’ll sing me into another world with her sweet voice. maybe she and ishaaq will be there and they’ll bring tom to me, having befriended him on the other side.
i wish anna peace and strength and love.
i know she’ll have all of those things as she moves through her life.
by Band Back Together | Oct 7, 2010 | Anxiety Disorders, Coping With Depression, How To Cope With A Suicide, How To Help With Low Self-Esteem, Major Depressive Disorder, Sadness, Self Loathing, Self-Esteem, Suicide |
I’ve battled depression since I was a teen. I didn’t know what it was until late into my twenties. I just felt as if something was wrong with me or like I was a bad person.
I’ve been on medication for the last year. It was working. Working really well. My mood had greatly improved. I was no longer hearing a baby cry random times of the day. My anxiety had lessened. But the last couple of months it’s stopped working. I thought I was just in a funk. It happens from time to time. When I’m in a funk, I feel down and I lose all interest in housework, my kids, my husband, and my life in general. The one thing that keeps me going is school. I love going to school. I love doing the homework. It gives me purpose.
I started to feel down this summer.
I don’t have any friends. People say “you must have some friends,” but the truth is: I haven’t had a friend in over 10 years. When I met my husband it was wonderful. He was my friend and that was all I needed. Truthfully, I think I need more friends. I need someone to connect with. Someone to talk to besides him. I hate this feeling of being alone. I know my anxiety keeps me from talking to people and I need to work on it.
I was in therapy the first seven months that I was taking my medication. My counselor thought I was doing wonderfully. I wanted to be doing wonderfully. But the truth is, I was still having anxiety. Anxiety about leaving the house. About meeting new people. About about being a good enough parent or spouse.
I’m back to the dark place. I’m having thoughts of suicide again. Sometimes, I think sometimes everyone would be better off without me. I’ll think of how easy it would be to wreck my car while I’m driving to school so everyone would just think it was an accident.
I know I need to change my meds again. I need to call and set an appointment up. But I have anxiety about that, too. I don’t want to admit I am a failure. That once again I am not okay. And I worry, what if they don’t believe me? What if I am just overreacting?
What if I get in to see the doctor and I don’t have enough courage to say what I’ve said here?
(ed note: why don’t you bring this post in with you if you’re afraid you can’t talk about it? Any doctor will take you seriously.
Much, much love. Please remember that suicide is never, ever the answer. The Dark Place is a place that many of us have been before. There is hope.
If you are seriously considering suicide, this is the phone number for the National Suicide Prevention Hotline:
1-800-273-8255
Please know that you are loved. And you are never alone.)
by Band Back Together | Oct 6, 2010 | Multiple Sclerosis, Stress, Trauma |
Three years ago, I was diagnosed with MS. It took about six months from the time I first saw my neurologist to get the actual diagnosis, but he and I were pretty sure we knew what it was from the beginning. I loved my neurologist.
When I say “my neurologist” I actually mean my second neurologist. My first neurologist was a ball-licking douchebag with the bedside manner of a used tampon.
For a couple years before I was diagnosed, I felt “off.” My memory wasn’t as sharp as it had been. I had occasional periods where I would lose my train of thought. I had periods of shaking and twitchiness and I often felt like I was in a fog. My primary care doctor sent me to Dr. Douchenstein, who spent all of five minutes with me at my initial appointment.
He examined my eyes, asked me how I felt, banged my knee with the hammer and said he thought I was fine…but if I really wanted to pursue this….*deep sigh*….he would go ahead and order an EEG.
When my EEG came back with “some small slowing in the left frontal lobe,” he said it was no big deal. He saw nothing remarkable and that there was no seizure activity indicated on the EEG.
In short; I was fine.
I saw him about 9 months later and he spent even less time examining me and indicated that no further tests were necessary. I could see the receptionist on the way out to give her my co-pay. Wham-bam-thank-you-man.
My primary care doctor believed something was wrong, though she didn’t know what. She sent me to see a new neurologist and this dude was the polar opposite of the first one. The initial appointment was over an hour long and he asked about everything.
Through his questioning we found out something very interesting.
As a child, I’d remembered taking an orange liquid-filled capsule. I’d stopped taking it when I was around 16 or 17 and I never knew what it was for. The truth is that when I got old enough to question what it was, I had taken it for so long that I didn’t think twice about it.
Dr. Raddude had me ask my mom what the pill was for and (finally) at age 40, I learned that I had petit mal seizures as a child. You would think that would be the kind of info I would have known, but nope. With this new information in hand and an extremely thorough initial evaluation, the doc went to work investigating.
Approximately 15 MRIs, a CT scat a PET scan, two EEGs and a spinal tap later, I had a diagnosis of multiple sclerosis. I was having small seizures still but honestly, at the time our focus was on diagnosing the MS. The diagnosis of the actual type of seizures has been in the last month, mainly because they’ve returned and have been getting worse.
MS affects everyone in different ways and for varying lengths of time. If you’re not sure what MS actually is, it’s a degenerative disease of the nervous system. It’s not fatal, but it does lower your quality of life. There are four types of MS and each is slightly different than the others, but there is one common thread: no two people will necessarily have the same symptoms.
My symptoms tend to be dizziness, loss of balance and coordination, dropping things, stumbling over my words or slurring words, losing my train of thought, straight up forgetting things (things that I should absolutely know) and (this may sound funny, but is NOT a joke) I had one more symptom in my head to tell you, but I cannot remember what it is. Whatever it is, it’s kind of new to me and I was going to tell my doctor about it, but as I said, I forgot to write it down.
When I was first diagnosed, I was in the midst of my first big MS attack. It lasted about a year, and in that time I had to use a cane, could not walk more than a block or two without getting completely exhausted, had to write everything down in order to remember it, fell I don’t know how many times, including a half dozen times in the shower and went through a two-month period where I needed to sleep 16-18 hours a day.
This wasn’t stay-in-bed-like-I-have-depression, this was sleeping because my body needed the rest. My neurologist said it’s not uncommon for some MS patients to go through that and it completely sucked for me.
Throughout all of this, I had full custody of my daughter. Luckily, I had nearby family who could help me out. For a while, I was having a hard time with doing simple things like fixing dinner. There were nights when I would try to cut veggies and my hands were shaking so badly that I was afraid I would cut a finger off. Other nights, I repeatedly dropped whatever I was carrying–plates, food, knives, you name it.
I couldn’t drive for almost a year because of the dizziness. Luckily I got state disability for six months, but was denied SSI. Why? I really have no clue. The crack medical team that evaluated patients for Social Security was holed up in a shitty storefront office with 1970′s equipment and they said I didn’t need it and that was that.
Assholes.
The kicker was the woman I was dating at the time. She is a RN at a very well-respected hospital and one night she told me this, “If you can’t work and can’t do the normal things you should, what good are you?” And with that, she dumped me. Swell, huh?
For two years, I did pretty well. The symptoms were minimal and except for a couple of small episodes I remained symptom-free. Until about two months ago. Things haven’t gotten as bad as it was the first time. Yet. Maybe it never will. That’s the thing with MS–you just never know.
Since the first attack I’ve moved far away from my family. I have a new neurologist that I absolutely love. She’s as thorough as the first one and is the one who actually diagnosed my seizures as Juvenile Myoclonic Epilepsy or JME.
Thanks to the seizures, though, she is pulling my drivers license which means I need to look for a new job.
My current job requires a license. Plus, I deal with people on a daily basis and it’s tough when I keep stumbling over my words. I’ve been mocked by some co-workers on a regular basis as well. A couple of days ago, I was standing in front of my boss’ desk for about five minutes and we were talking. In that short time I dropped my pen three times. He never said a word, but the last couple of days I’ve had co workers pass me in the hall and drop whatever they had in their hand. They will generally bend down to pick it up and say something like, “clumsy me.” It’s childish and makes me feel both pissed and like less of a person–though I know I’m not.
Things are starting to suck ass again, but it’s not the end of the world. I have a couple of friends here that I can count on and I have a wealth of them back home and ones that I’ve made through my writing. I consider Aunt Becky (ed note: I love you, yo) a close personal friend and I would help her in a second if she needed it.
The bottom line is this: I have MS and JME and they will both (to a degree) diminish my quality of life and will make things more difficult for me, but neither disease is who I am. I will find a way to get by. I’ve taken this and put my own touch on it. I occasionally have to use a cane, but I found one that has flames painted up it.
It looks way awesome and it’s my way of looking at the MS and the JME and saying, “blow me.”
by Band Back Together | Oct 1, 2010 | Abortion, Abortion Recovery, Adoption, Family, How To Help A Friend With Infertility, Infertility, Woman's Health |
I am infertile.
We have been trying to have a baby for years to no avail. I will spare you the details, but I was approached by a potential birth mother who is a friend. She is pregnant, doesn’t want the baby, was going to have an abortion and decided she didn’t know if she could go through with it. She asked if we might be interested in private adoption. YES, oh YES, it would be a dream come true.
I did it. I got my hopes up against all logic and warning from everyone.
I got a text today that says she is not going through with the pregnancy. I am so sad right now. I am heartbroken at the needless loss of a life that could be my baby.
Where do I go from here?
I had such a tight lid on this I never let myself feel this hope or dream.
I let the lid off and now I am devastated.
