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Counting My Blessings


Guest tearose
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I've been figuring out a new balance after my last relapse. I'm on the road back and this just flowed out yesterday...

thought somebody here would understand...

I am rarely this verbose. I guess it is part of my healing.

September 26.2007

I didn’t ask for this.

I continue to ask for the strength to deal with it.

I keep counting my blessings.

I have a physical disability that is usually invisible to onlookers. Unless I am using my seat cane or have had to bandage my arm, I appear to be a regular looking woman.

I keep counting my blessings.

In 1991 I had some type of bite and subsequent illness that after 9 months was declared to be lyme disease.

I was treated with IV rocephine for 6 weeks and I believe if I had lyme it is long gone. I was unfortunately, left with permanent damage. I have unilaterial left-sided lymphedema and a malfunctioning autonomic nervous system. The lymphedema is damage done in the lymph system and this causes swelling and pain when the fluid presses on nerves. I have to compress the limbs to get the fluid out. I have to be very careful to keep sodium levels balanced and not allow infection or lymph to build up in these limbs. My left arm is in constant need of maintenance. My left leg and foot responds very well to compression hose and I have been able to wear my normal size shoe since the original treatment by Dr. Learner from the Learner Lymphedema Clinic in 1992. I rarely have had to deal with the calf and foot; I always have to deal with the left arm, hand and chest.

It took several years to finally find the answer to what was happening to my heart and head…in 1998, at the Columbia Presbyterian Hospital Autonomic testing lab, and then in 2002, Mayo Clinic in Rochester MN; confirmed I have Postural Orthostatic Tachycardia-Hyperadrenergic Type of Dysautonomia…this is referring to the dysfunctioning autonomic nervous system. It is a new field that overlaps cardiology and neurology. The autonomic nervous system, is in most people, regulating those things we don’t think about…breathing, heart-rate, blood pressure, digestion, elimination, body temperature…

Well, in me, it is like I am in manual mode…

I have to think about when I may need to stand, what will I do if I begin to get lightheaded… I carry something to sit on the ground on or I carry a seat cane.

I have to plan my meals and carry snacks,

I carry water, electrolytes, change of clothing…

I wear compression garments to keep my heart-rate down and my blood pressure up.

During difficult management times, I wear a heart monitor.

I keep counting my blessings.

Morning…

I get up every morning as early as I can. This is usually around 6 am. After a brief stop in the bathroom, I drag my tired weak body down the hall, stopping along the way, sitting when I am out of breath or dizzy, all on my way to the kitchen. I have to keep the lights low since my eyes can’t handle the lights until I get my blood pressure up. I can easily pass out or trigger a headache if I move too quickly or am bombarded with bright lights. I am still heading for the kitchen where I will brew my morning “nectar”. I make a regular brew of coffee by combining two scoops of coffee grinds with water to the 8 cup line on the coffeemaker. It is a weak brew, but I am drinking it for the hydration as well as the caffeine. It takes about two hours to have my breakfast, get my blood pressure up, my vision stable and get my body in balance enough to head back down the hall to the bathroom for the shower and to get dressed. Unless…

If I am not in a relapsed mode, this is the time I would get on the treadmill and try a walk attempting to keep my heartrate balanced. NOT on the treadmill, my heart can go from a low of 38 to a high of 190 bpm from regular daily activity. I usually move at a constant speed on the treadmill and try to keep my heartrate under 180. I have done as little as three minutes to as long as 60 minutes…when I know the consequences won’t be bad for me. I enjoy the treadmill, exercise, moving of all sorts. I never let my body get deconditioned so if not the treadmill, I also have a whole series of floor exercises and an inversion table to use as well.

Showering,

I turn on the heater to make sure the room won’t be too cold. Shivering is not good. I have trouble regulating my body temperature and being too cold or too hot can make moving my body difficult. The left hand thumb and pointer finger often will get numb from changing temperature. Pain often follows the numbness so I try to avoid the numbness.

I get my towels, shower chair, water bottle, robe and slippers and carefully wash and dry. I sit on my shower chair till I feel strong enough to stand.

I dry very thoroughly and then prepare to dress.

Dressing,

I never think about the weather first. I think about how my body feels and how many layers it will take to get compressed to a good level. A good level means I will be able to stand several minutes without having to sit or lay down. I want to appear as normal as possible. I want to be able to move around without feeling encumbered.

I start by gathering my compression garments. I sit down on the floor. I always use two sometimes I use three or more garments. It takes about three minutes to get my lower abdominal compression on. It can take anywhere from 7-15 minutes to get the compression pantyhose on. This is the hardest part and usually makes my heart beat in the 140-150 bpm range. I tend to get sweaty and out of breath during this donning and will then just lay on the floor for a few minutes until I catch my breath. If it is a good day, in about twenty minutes I will feel strong enough to stand and walk and select my outfit for the day. I then sit at my mirror and do my hair and makeup. If I haven’t found a balance, it is back to the floor where I will have to don another compression garment, the upper abdominal or one piece torso compression garment.

This process can take anywhere from three to five hours. Usually, I am “good to go” by 11am.

What a blessing.

Sometimes the place I am good to go is back to the kitchen to have a light snack and hydration… and to count my energy points. Then I figure out the rest of my day.

Energy Point System…

I try to mathematically figure out how much energy I have and assign a numerical value to this level. Then I make my “wish to do today” list and assign a numerical value to each activity. I then “shop” my wish list and make my plans for the day. If I am well rested, it is around 11am when I do this math. On a feeling good day, I will give myself about 100 points for the day. A typical good hour is now worth 10 points. This means I can do a non-strenuous activity like driving for one hour at a cost of 10 energy points. If I choose to do dishes during that hour it would “cost” 20 energy points for the same hour because there is more motion involved and I must be seated at the sink and make accommodations for my blood pressure. If I chose to go for a walk, it would cost more and then I will also allow time for bouncing back from activity. Nearly everything I do is planned and balanced so I avoid dizziness, shortness of breath and fatigue. Unfortunately, just recently, I actually completely exhausted myself after a shower so much so that I had to rest in bed and sleep for about twenty minutes to recuperate from the shower. I also reserve energy points for a big project or an outing for the next day or an upcoming event a few days away. I recently crashed after an allergic reaction to mold, I also can crash from overexertion. I just don’t have the ability to store much energy so I must plan ahead to avoid a crash.

A Crash ?…

In the potshole…again. (No, I am not there now, but recently enough)

I know this place. It is sometimes dark and cold but it is usually very warm,cozy and familiar. I have learned to appreciate this time as a special time to refocus, learn, get introspective and get up and out…all in the time my body, not my brain dictates. I have to do slow and steady healing here. I relearn how to think, converse, remember, wash, exercise….it must be something like what happens to people after a stroke. I have come to respect this time. I have visually decorated the potshole in a warm, healing and lovely way. I see soft comfy cushions, lace doilies, roses, a view of the outside and the way out…

I am closest to the divine here.

I am quiet here.

I am humbled here.

…I am truly blessed.

Stabilizing…want to return to work…again…

I have managed once again to climb out of a relapse. I am back on a more even keel. I have about four productive hours a day. I want for more…I keep thinking to myself…maybe next week I’ll be stronger… For now, I use these four hours to do laundry, talk on the phone, cook or tidy house. I haven’t had mental clarity yet to figure what to do for my next job search. It is so hard. I see my physician tomorrow. Maybe he will have an idea. He is a great physician, I am fortunate, I have so many blessings.

Using my precious time…What to do now? I want to contribute to my family financially.

I want to feel like I am helping my husband. I want to help support our family.

Don’t I have some saleable gift? I enjoy working. I want to work.

Isn’t there something I can do to earn an income?

Where am I not looking? What am I not seeing? …anybody want to buy a blessing?

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