My Dog Lexi And Me

Vanilla custard with raspberries, blueberries and slices of thinly cut kiwi fruit, a small chunk of fresh pineapple, flaky almond crust. Small bites spread over an hour with a blue glass of icy cold milk. A dessert fork, lights dim not glaring. A peaceful Sunday night dessert.

Fresh fruit tart with kiwi, raspberries, and b...

Monday is cold and biting, raining, sleet. No place to go, to rush out the door. My dog is downstairs curled up on the couch, she looks like a sleeping fox. She, apparently, has no energy today either, I try to take her out but she looks at me with disdain.


She will not go. We look at each other wisely, we agree we should all move together to a warmer climate. “Florida?” I ask her. “California she murmurs, less humidity.” I agree immediately.”Someday” we agree.

We sit on the coach as we do every morning. Her body and paws on my lap, my arm around her head softly scratching behind her rusty colored ears, in her favorite place. We talk together.  She tells me if we move she is scared to swim in the ocean, I tell her I totally understand. We will start very slowly until she feels comfortable or if not she can play in the sand. I wouldn’t force her to do anything, I’m not that kind of mom.

I never forced my children to do anything they didn’t want to do either, I just insisted on them having good manners and being respectful. They both are. I am so proud of your siblings, I whisper to the dog,and I am so proud of you.”  I let her in on a secret: “they will be home very soon to visit you.” The dog looks up at me, her eyes brighten with interest. She knows when her brother comes home he will rough house with her, she knows when her sister comes home she will get extra hugs and kisses, mostly in private.

Everybody says we should not feed the dog at the table

but we all do except for dad, he is the strictest of the family. I just need a soft, warm, mushy look and my hand is out. Sister sometimes slips too and gives in not to mention grandma who gives pieces of food all the time, even to the dog’s cousin where it is really NOT allowed. “But it makes him so happy” she says, calling the dogs boys when they are both girls. It’s a language thing.It makes us all laugh.

It is finally time to get out of bed and take a hot shower, whether I want to or not. It is so cold in the house, I am shivering. Nothing motivates me except the amount of days I haven’t showered. I have accepted/relented to Winter because I have no choice. I will stay in as much as possible, that is my coping mechanism. I can’t fight it, I may as well hide from it. I’ve given in.

Time does not stand still, not at all. It breezes past, its bitterness a step away from me. I like it that way. If I don’t have to go out, I won’t. If I can’t live in a warm temperature, I will make the temperature warm in my house. I will only go out when I need to go out. Tomorrow, I need an EKG, just a three-month check-up, no biggie. I will go and I will come back, happy to be home.  I will make a cup of tea with a spoon of honey

and I will appreciate that even more than usual. After that, I will sit once more, with my dog, lying on the bed and we will close our eyes, together. Nap time.

 

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Hitting The Wall: Fibromyalgia

English: Common signs and symptoms of fibromya...

English: Common signs and symptoms of fibromyalgia. (See Wikipedia:Fibromyalgia#Signs and symptoms). To discuss image, please see Template talk:Adult female diagrams References fibromyalgia-symptoms.org Retrieved on April 19, 2009 (Photo credit: Wikipedia)

Fibromyalgia and Fun. An oxymoron. Who would argue with that? Everyone who has this chronic pain illness.  I’ve recognized a pattern, on a “good” day ( rare)  I can get out of the house (showers are optional) in the morning and I am able to do a couple of errands. The maximum time spent out two-two and a half hours. The other day I pushed myself to three hours and right in the middle of the sidewalk I hit the wall.

Literally, I stood on the street and felt all energy drain from me. I couldn’t speak, walk or focus. Finally, I managed to get to my car and after a few minutes of sitting down, having something to drink and eating some peanut M & M’s, I was  able to drive home. *(Think about doing this fellow Fibro Buddies, yes, its sugar but it’s also protein.) Once home, I dragged myself upstairs with my hands on the stair rails, one step at a time, like a toddler. I flopped into bed with my street clothes on and passed out for three hours.

Rolling around in my brain for the last day or two is a notice posted on Facebook about a fellow Fibro sufferer who has taken her own life.** This is not the first person to do so and it makes me so sad. Was it the pain, the frustration, the depression, the anxiety, headaches, all the above? Did she take antidepressants or anxiety tablets?  Was she faced with uneducated and unkind people who didn’t believe her?  Did people think she was just “complaining” a bit too much or maybe she had a doctor that  rolled their eyes and told her to just calm down and stop whining.

I will never know, but I cannot stop thinking of this woman, so desperate to leave her life, her pain. I don’t know her but I feel FOR her. Yes, we do have a chronic illness that is limiting and there is no cure for it. BUT, through trial and error, it can be maintained. You need to stay and fight for your life, for your children, husband, partner, mother, lover or precious dog or cat. You need to fight for YOU.

We have support groups for this very reason. Please don’t give up. Join one of the many wonderful groups on-line if you need support and, if you are EVER thinking about taking your life, let someone know, a friend, a neighbor or call the hotline below. I’m begging you. I care, we all care. We understand. There is a tomorrow that will come very soon and it may very well bring with it lower pain levels and a better day. The day you are having is probably the worst it can get, give your life another day, another chance to be happy. That’s all I ask for.

**No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area, anytime 24/7.

 

Kraft American Cheese, Sleeping, Anxiety And Yoo- Hoo

Slumber

Slumber (Photo credit: weesen)

Some people drink when they are under stress, others turn to cigarettes, some to drugs. It soothes their souls and it may take the edge off of their anxiety. The people who drink red wine can boast that it is medicinally beneficial, heart healthy in fact. Others like scotch or beer or ooey- gooey sweet stuff with vodka in it, like a spiked punch. I do none of the above, when I am anxious all I do is get into my bed, surrounded by layers upon layers of blankets and sleep. Really, I do. The only food my stomach allows me to eat is a Kraft (orange) American Cheese Sandwich on soft bread with soft butter or margarine spread and a box of Yoo Hoo to drink. That’s it. I lose weight during this period of anxiety but really, it isn’t any fun and definitely not worth it, well maybe worth it a tiny bit.

There is nothing more relaxing to me than”hibernating” under mountains of blankets, snuggling with my pillows and escaping life’s problems. Do I know what I am doing? Absolutely. Do I choose to do this? Yes. It is my way of dealing with overwhelming stress without any addiction except the warmth of my bed, no alcohol or drugs needed. Sometimes I say I am just going “to rest” and we all know what that means…..

I acknowledge what my problems are, I’m not crazy, this is my coping mechanism. I can’t change the situations at hand for the better so I have to live with them and instead of being the hyper-oh-my-God-what-are-we-going-to-do person that I already have been for 24 hours, I try to balance that with pure avoidance therapy. It’s cheaper than a lot of other coping mechanisms and I can do it anytime I want.

There are only specific foods that I CAN eat when I am that, shall we say, out of sorts? American cheese (Kraft Individualized Orange slices) and bread, soft butter and Yoo- Hoo to drink (boxes). This is my comfort food and I will absolutely have it every single day, it is the only thing I WANT to eat and CAN eat when I am this upset. It soothes me. I can eat it five times in a row, even ten. It depends heavily on the situation. Tonight, I actually ate something different since we were at a restaurant but the only thing that appealed to me was ravioli stuffed with butternut squash. I couldn’t look at my husband’s rare burger though admittedly I did try a bite of my son’s steak. It tasted delicious. My own food was soft, mushy and comforting and it certainly was in the same genre as my American cheese sandwich. Club soda with lemon was definitely no substitute for my beloved Yoo- Hoo. They should really stock that in restaurants, don’t you think?

Things are a little better now, not completely but we are coping. I’m off the complete American cheese sandwich but am still into small portions of soft food like the baked ziti I made today. It wasn’t my exact comfort food but I’m trying to branch out a little. Even I try to be flexible after my 24-48 hours guaranteed American Cheese/Yoo-Hoo Festival. Sometimes. it even works. Sigh. Okay. Rarely.

*my admiration and thanks go out to Kraft and Yoo-Hoo companies.

How I'd Spend a 28-Hour Day

A Sleeping moon in a cap.

Image via Wikipedia

Is There Any Other Answer?

First, I would make my fantasy bedroom really, really dark. Then, after having a leisurely breakfast, doing some errands and having lunch….I would NAP. That long three to four-hour nap that makes you feel so refreshed it’s as if you have been on vacation for two weeks in Europe minus the traveling headaches. I would plump my cool pillow into the exact right place, move my feet in their rhythmic beat to get into my perfect sleeping position. I would start on my back, think about my day, then slowly, slide to my stomach, one arm around the pillow, legs straight, blankets never tucked IN to the bed and sigh happily. You know the news organization that says something like “give us ten minutes and we’ll give you the world?” Mine would be simpler, give me four hours so I can take a really nice, well-deserved nap.

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Being A Mom With A Chronic Illness (ChronicBabe carnival)

Mother and Baby

Image by Praziquantel via Flickr

My goal in life, since I was five years old, was to become a mom.  I thought getting pregnant would be natural and beautiful but it seemed we needed a little help. After two and a half years of painful shots, medication and an every day visit to the infertility clinic  for blood work and ultra-sounds I finally was pregnant. I collapsed to my knees behind the closed-door in my stuffy office and kissed the dirty gray carpet in gratitude. I cried with happiness, one hand already covering my tiny belly.

My son was born and we called him Buddha baby, he never cried, he was always happy, a smiling, compassionate and outgoing kid.  He was my miracle baby, my first born. I went to every baseball game for my son, sitting in the bleachers in the rain, and sneaking away to the car to warm myself up.

My daughter came, naturally, twenty-one months after her brother was born, screaming on top of her lungs as she entered the world. I remember going into her room and lifting this red-faced baby girl to my shoulders, she would take a deep breath and her whole body relaxed into my neck.  I was her only source of comfort when she was a baby. I was there for every ballet lesson and dance recital, holding a bouquet of daisies, her favorite flower, in my arms like I was nestling a newborn baby‘s head.

I did everything for my kids and I loved doing it. This was the career I decided on and I wanted nothing more. I stayed home with them even when they got older because I knew they needed me during the tough middle school years. They would never admit it but they were happy to see me when they got home. Working moms called me “old-fashioned” but I didn’t care.

When I was 50, I went through menopause and my body fell apart. I was diagnosed first with Hashimoto’s Thyroiditis, an auto- immune disease. When Synthroid, did not help me at all, I warily shuffled from one doctor to another, every bone and muscle and joint in my body screaming with agony.  My internist had given up on me, she stormed out of the room while I was laying there on the exam table crying in pain.  After visits to many different doctors I was finally diagnosed with Fibromyalgia. I felt like I had the flu, every single day and night, with no fever, my personal definition of Fibromyalgia.

My life changed after that. I became the mom “before” I was sick and the mom “after.” I felt that I was no longer the mom you could always count on. I prefaced everything by saying “If I feel okay that day,” and “I’ll call you the morning of…”  Luckily my children were fourteen and twelve but it was now Dad who got up, made breakfast and lunches and dinner. Me? I was asleep, always asleep and in pain.

I felt lost and sad for years, not being able, physically, to be the mom I once was. Now, I am dropped off at an entrance to anywhere we go  like the handicapped patient I am. I sit alone, on a chair, when all the other parents and children go on a campus tour to see the entire campus. I cannot walk that far. I don’t want to be an embarrassment to my children or a burden for my husband.  I want the kids to remember the mom I was before I was sick but I know they don’t. They probably just remember me as I am today. I am not the mom I was before my illness even though my heart remains unchanged. I am the mom that they have now and because of that I have tremendous guilt and a lot of residual, emotional pain.

Barely Treading Water With A Hint Of A Smile

May 30, 20010

I think I may just have to live an old life, actually a much older life at a slower pace, a gingerly walk and question mark for every day. I may need to stop all the medications I take for my auto immune disease, Hashimoto’s Thyroiditis,  and inflammatory disease and  just live with even less energy, more aches and pains and even more inflammation. It wouldn’t really matter, I don’t think, because with all the medicines I take now, I still feel those things. I feel those things every day along with nasty side effects from the prescribed medicines.  I am not drowning in the ocean, nor am I swimming powerfully, I am mostly trying to manage to keep my head above water. I am not depressed or suicidal, I am not happy or ecstatic, I am just living in a state of symptom to symptom, energy for an hour, napping, reading, napping and tired.

I don’t notice much improvement, if any, from the medications to begin with. Can I go from bad to worse? Possibly. Can I learn to adjust to that? Maybe. The lack of energy is probably the worst part, I can live with aches and pains and holding on to staircases to get up the stairs. But,  when a beautiful day presents itself to me as a present, like today,  I cannot live, not knowing what or if I can do anything at all. It’s not fair to me but mostly it is not fair to my husband and I feel bad about that.

It’s Sunday of Memorial Day weekend, the sun is shining, the sky is a pastel blue, the bountiful green oak tree leaves are swaying softly. Birds are serenading us with their sweet high-pitched songs.  My husband and I had no plans for the entire day and he was up to doing anything. Go to the city? Go to a park? How about a museum? He was willing to do whatever I wanted to do and having my now familiar stomach ache (side effect of the medication) and being tired, I chose a nap. There was no back and forth discussion of which place to go or what would be more fun because of me. The bar is set so low that staying home sometimes is my only option.

I don’ t know what to do, other than go on one more expensive tour of doctors again. I will do it, I will try, for the last time. After that, I don’t know. I don’t say that with depression or despair, it’s an option I need to consider. I live a sedentary life now, truly, if I have two hours during the day that I feel energized it’s a good day. Lately I haven’t even felt that. I’ve been stuck at home, happy just to be alive.

Do I think it’s fair? Not really but I don’t think it’s unfair either. People live with far worse things. I find it frustrating and disappointing that I have lived life like this for the last three years. I awaken, each morning, with a question mark, to see if I feel better, but it hasn’t happened yet and I don’t see it happening anytime soon.  Is it is better to deal with a new reality and no side effects than be stuck with the old one?  I have no idea. What am I going to do? I honestly don’t know. I need help, more doctors, different doctors. no doctors?  I am feeling a little overwhelmed and I think what I need the most right now is a positive attitude and plenty of of good luck.

Dedicated to my wonderful husband, Danny.