Wild-Heart.net

I can’t hit a ball, never could, and I feel like I’ve been stuck in a batting cage for the last month dodging a never ending barrage of balls being pitched at me.

Where to begin? As if any of this matters other than clearing cobwebs from my mind so that maybe I’ll actually feel like blogging again instead of hiding.

Let’s start with the quack of a doctor I started seeing for primary care last fall who informed me that I have COPD, told me that it was in my medical records yet refused to show me where exactly in my records it was and when my symptoms were not getting better refused to refer me to a pulmonologist or a cardiologist even though it had been over six years since having seen either one. Well, I finally found and had my insurance change me over to an internist that seems to be relatively competent. He would have an even better time of doing his job if the afore mentioned quack would release my medical records to him.

New doctor set me up with a referral to a pulmonologist. Pulmonologist reviewed my x-rays, had me do a breathing test, said my asthma is under control and the problem is not COPD but that as I had suspected, the pulmonic valve stenosis stuff is worse and that I need to get a referral to a cardiologist as soon as possible because with the symptoms I am exhibiting it is possibly time to replace that heart valve and, “when you go, if they decide it’s time, make sure you tell them that I want to be on the surgical respiratory team because what you have is really rather rare and I’d love to be there for the surgery.” Gee, Doc, you bet, I’ll make sure you get to be there for the freak show. Still waiting to hear back from my internist on the cardiology referral.

Then there was the referral to the GYN. It had been 5 years since I’d had the lovely pap done. Yes, I know. I am a Darwin candidate. Especially since I’ve had three procedures to remove (non-HPV related thank you very much) pre-cancerous cells removed in the past. She did the exam and history, etc. Asked if had any concerns or questions. I let her know that I’ve had no less than 12 menses since the first of the year and about the cervical pain I experience during sex. She had no answer for the frequent menses other than a possible sign of perimenipause and/or stress and then told me that the cervical pain was most likely all psychological in nature. Lovely. Nothing like having the person who just peered up your vagina telling you that you have mental health issues with sex. Five days later I got a call from the GYN telling me that my pap results came back with results for a non-STD related bacterial infection and she actually apologized and said that was the cause of my cervical pain. When I asked her what caused the infection she made a statement that made my husband beam with pride when I later told him, “These types of infections are usually the result of repeat injury to the cervix, if your partner is well endowed, that is the most likely cause of the repeat injury leaving the cervix vulnerable to infection from normal bacteria.” Way to go, Joe! In the mean time, I’ve had cramps like a mofo ever since that pap three weeks ago. Made worse by the pelvic ultrasound that she scheduled and that I had done yesterday. Talk about a surprise. I hobbled my way back to the exam room and the tech pulls out the vaginal probe, “I’m going to be doing a vaginal ultrasound today, we get clearer pictures of the uterus and the ovaries this way.” Way to ruin a day.

I think I can talk briefly, in circles about how things are going concerning the information in the password protected post. Let me just say, after having played the nice neighbor once in this neighborhood and the one neighbor that became a daily part of our lives losing his mind and murdering someone, I will never again be the friendly neighbor. I don’t want to know who my neighbors are. I don’t want my children to know who our neighbors are. Baby Boy is just now starting to re-stabilize after having to deal with the trauma of another male figure in his life doing something horrifying.

On the plus side of things, I think we’ve finally found our homeschool groove. Boy #2 distracts Baby Boy and Baby Boy distracts Boy #2. Boy #2 however, is a night owl, so he stays up late, logs in and does his school work from 9pm until 2am and then sleeps until 11am. Baby Boy works on his school work from 7:30am until noon. Unconventional but it works for us. The best part is that it keeps Boy #1 and Boy #2 from their previous routine of bitching at each other for at least an hour every night at bedtime until one of them gives up and falls asleep.

Another positive, the topamax has done wonders at keeping the migraines at bay and even seems to be helping the fibromyalgia a bit. It’s also a wonderful thing to have the flexeril on hand for the days when the spasms and spasticity would otherwise have me tethered to the walker.

Not only is the living room now void of all furniture, it is also completely void of carpet. The property manager chose a lovely dark walnut shade of floating vinyl linoleum. It’s a wide plank look so it will go perfectly with the decor we have going on. Dark and cool in the summer and a warm feel in the winter. Not that it ever gets cold enough to actually need heat more than a couple of months out of the year here.

Supposedly the living room will be done today and the carpet will be removed from the stairs and the upstairs hallway. Tomorrow the stairs will be rebuilt and the Berber carpet laid on the stairs and upstairs hallway and the exhaust fan installed in the bathroom. After that he won’t be back until Tuesday and thinks he’ll be able to get both bedrooms done that day. I don’t think he’ll be able to get it done in one day and it’s cutting it very close. But if he gets one room done it will be the master bedroom. Upon hearing the plan I let Joseph know so he could schedule that day off to help with the furniture in our room. He has a circa mid 80’s government issue metal and laminated monstrosity of a desk that easily weighs 300 lbs. There is no way I can help move that thing. Heck, after the last moving of furniture to help with the painting there is no way I’m going to attempt to move a single thing. That resulted in a 3 week Fibromyalgia flare-up from hell.

But all of this is being cut very close to the call. My mother and Boy #1 fly in next Thursday. It had all better be done by then. So much to do so little time and so little out of my hands. Sucks to be a control freak!

With the lottery winnings. You know from the lottery that I never play… I dream of this house often. My husband’s version goes something along the lines of purchasing a decommissioned bomb silo and converting it into an underground oasis. Not me. One would think that seeing as I have become an unpredictable cripple in recent years, I would want a one story home. But I don’t. I wasn’t raised in a one story home and even before I caved into my husbands fear of moving I had a very difficult time finding “the” house for us because it meant giving up a second story.

I wish I had thought to check into stairlifts. While this may be a UK company, I’m sure there are plenty in the SE States that offer the same. But I’m sure that they’d do quite well for the home I’d love to purchase and remodel “across the pond” someday. You know, when I finally purchase that lottery ticket and win. These stairlifts don’t look anywhere near as unattractive as those that you used to see advertised on TV. Heck, I think I want one for the townhouse!

For those of you close enough to have read the now temporarily defunct other blog, you know we, as a family have been through a whole lot of hell with Baby Boy since December of last year. The short of it is that eventually he was diagnosed with severe early onset schizo-affective disorder… two weeks prior to my mother finally being diagnosed with the same disorder. I feel like it’s something I’ve been dealing with all of my life in caring for others. But when it’s your own child, it’s something else entirely.

This came about just as I finally won my 4 year fight for disability. During those years I was without medical coverage. As an asthmatic with diastolic heart failure as a result of giving birth one too many times while having pulmonary stenosis and ventricular incompetence, I knew better than to let a sinus infection or bronchitis go untreated, but I did on more than one occasion which led to the development of COPD.

Myself and my children are extremely sensitive to stimulants of any sort. They tend to make us a bit manic. Add the stress of what we’ve gone through with Baby Boy and the addition of COPD medications, which are all stimulants  and I became a ball of manic anxiety. It got to the point that 1mg of Xanax taken 4-5 times daily didn’t settle my nerves. Not even the additon of an antipsychotic mood stabilizer did the trick.

Baby Boy and I had our monthly appointment with the neuro-pyschiatrist on Friday. He was finally able to review my lumbar MRI screens and devise the best pain/anxiety/and mood treatment to give a try. So now for me it’s 5mg of Abilify 2x daily, 2mg Xanax 3x daily and 50 mg. of Tramadol at bedtime. I now sleep at night. Since starting the Spiriva for COPD two weeks ago, I had been fighting insomonia to no avail. Not even Melatnonine would knock me out. Nor Benedryll.

The numbness in my thigh isn’t bothering me nearly as bad, my daily migraine had disappeared,  and I haven’t been this relaxed in years. Sure, I’m still up tight. But nothing like I had become after watching my child lose his mind six months ago. The Tramadol is also supposed to help the Fibromyalgia and while I cannot say that I am pain free, I can say it no longer is taking me 3 hours to get moving every morning.

So far, so good. Mellow is good.

Yesterday’s appointment with the new internist when okay, I think. He was quick and thorough and there wasn’t a whole lot he was able to do other than take brief history until my medical records reach him. I have to go Thursday or Friday morning to a lab to have blood drawn. My blood pressure was low and his nurse wasn’t able to get it and it took him two tries. The reason for going to the lab is that I have tiny veins on a good day and they can only rarely be hit on a first try.

I like the nurse at the new clinic. She stopped after the second stick and sayd, “Honey, I’m sending you to the lab. I refuse to hurt you again.” See, the only clear vein she could find was in my hand. I have so much scar tissue on my hands on wrists and inner elbows from lab sticks and iv sticks it’s not even funny. I was once told by the obstetrical nurse who took care of me the first time I was hospitalized for dehydration do to severe “morning” sickness when preggers with Boy #1, that after that bad bout of dehydration, nurse would forever have a difficult time sticking me. She wasn’t lying. I can’t recall the exact number of times that if in the hospital I’ve had to stop an over zealous lab tech and beg them to please call an for someone in anesthesia to get the vein.

My previous doctor was forever treating my COPD with steroid medications even after seeing the effect they were having on my mind and body. Whenever I asked the previous doctor if there was anything he could do that didn’t involve steroids he was emphatic that steroids were the best. He ended up concluding that I must have some sort of metabolic thing going on because even a 3 day course of prednisone would have me rapid cycling through hypo-mania and depression and wanting to eat the house.

The new doctor understood my medicinal sensitivies right away and said in his heavily Egyptian accent, “There is one thing but I don’t know if your insurance will pay for it. We will try.” That one thing is Spirivia Handihaler. *I just tried linking and WP’s editor didn’t play nice.* Within 30 minutes of the first dose I could tell a dramatic difference and it iss supposed to get even better by the end of the 30 days. I’ve also noticed a dramatic decline in the frequency in which I have to reach for the rescue inhaler. This is good stuff.

There is always a downside, though. It makes me feel speedy for about 6 hours after taking it. Try being physically crippled by a fibromyalgia flare-up and wanting to crawl out of your skin because you hurt but your mind and body are saying, “We don’t care how bad you hurt we need to do this and that and this other thing and you should go up and down the stairs a few more times.”

I’m exhausted. The package insert says this will dissipate over time. I sure as heck hope so.

• My nest is half empty pushing my anxiety level to new levels. Some may think that the years in which I did not have physical custody of my bio-boys was fun and easy. Little do they know me. It left me with an irrational fear of being separated from both my bio-boys and my bonus-boy.
• Baby Boy continues to struggle for stability. Friday I finally had an opportunity to speak with our family psychiatrist about this without him being present. The consensus being, severe early onset of schizoaffective with the major problem being, due to his previous hospitalizations, he tries very hard to maintain a facade of not letting anyone know when he is struggling with the auditory and visual hallucinations resulting in an increase of stress to maintain that control which triggers the mania aspects. The doctor said that he has one of the most severe cases of early onset he has seen yet also shows the most uncanny willpower to mask it and attempt to control it that he has ever seen. We also discussed this being the last time we try a different atypical anti psychotic. If this med combo doesn’t work, it’s time to pull out the “big guns” of the older and more potent schizophrenic medications.
• Had a lumbar MRI six weeks ago which revealed degenerative disc disease with two discs being fused with calcification spreading up the back of the spine and one disc bulging. This explains the lower body neuropathy and neurological symptoms but not the tremors in the upper extremities and decreasing fine motor skills. Waiting for a referral to a neurologist to make sure it’s just the fibromyalgia and not something else co-occurring.
• On Memorial Day I made the best smoked/grilled chicken ever. I also ended up with heat exhaustion from being outside all afternoon in the sun and the heat from the grill.
• Joseph is on vacation this week. The goal is to finish painting the interior of our town-home. The kitchen is half done. I’ll attempt finishing it tomorrow while Joseph works on patching holes throughout the rest of the house. When we’re done, the property manager claims new sub flooring, carpet and linoleum will be soon to follow.
• Father in-law and his significant other will be visiting a week from Sunday. We haven’t seen them since our wedding. It always throws me off guard. Joseph is a carbon copy of his father… only taller. His father also has the most unsettling way of looking a person straight in the eyes in a way that leaves one feeling that your soul has been left completely visible to him… It’s Joseph with age and wisdom. Lord, what a future Joseph and I have if Joseph also gains that much of his father in years to come.
• My last living grandparent is failing. She had the beginning stages of renal failure and was refusing to eat. She seems to have improved a great deal and I’ve been told that she’s came out of the renal failure. Her birthday is Sunday. I have to try and find a good time to call her this week. She keeps asking my parents, “When is my girl going to call me? She’s long overdue to call.” Thing is, having Nate home full time since his last hospitalization has left me with little time for luxuries such as long phone calls. And Grandma always talks with me for a very long time, always at least an hour and a half. Thank the gods for unlimited long distance!
• Boy #1 is now 5′ 9″ and only 15 years old. He just might grow into thoe size 12 feet someday.
• Boy #2 is now 14 and lord help my sanity. His personality is that of a great-uncle that while living, lived to keep drama going in the family. He carries a giant spoon with which to stir the pot at will.
• I’m a horrible mother of sons. While I enjoy them more the older they become, and the teen years aren’t quite as horrible as I had feared, the voice changes that boys go through is akin to nails down a chalkboard. There are days that I dread waking up as I know it will be followed by Boy #2’s forever changing and croaking and screeching voice.
• My mother will be here for my birthday this year. She will be arriving two days prior. She wants to meet Joseph’s family that lives here in GA and has suggested that my birthday should be the day. I’m more inclined to simply leave her to supervise the children and take a night away from home in a local hotel. Alas, between my mother’s wish and those of my neighbors & friends it will likely be that I play hostess for my own backyard birthday party.
• Bonus Boy is insistent that he wants to be here for the entirety of my mother’s visit and has begged Joseph to please ask his mother if he may stay with us the entire 12 days instead of just the 7 in the middle. I won’t hold my breath for that one.
• Sunday, the boys and I watched an older movie that has long been a favorite of Boy #1’s which he hadn’t seen a few years, 8 Seconds, the story of bull rider Lane Frost’s life. Boys #1 & 2 and I followed it with an older Julia Roberts movie, Something To Talk About, simply because, while it’s set in The South, it reminds us so much of life “back home.” Not to mention Robert Duvall reminds us so much of my Dad.
• Boy #2 has enrolled in Time4Learning for the summer with his goal being to complete 7th grade curriculum this summer and then take a grade placement test when school starts back in August. If he completes this goal, having seen Georgia’s mandated curriculum requirements for 8th grade public schools, he just might end up placed in 9th grade… There is that much of a disparity and that much lacking Georgia public school curriculum.
• Boy #1 wants to try to get accepted into National Guard Youth Challenge as soon as he turns 16 in January. I’ve been working with one of their mentoring coordinators to find a qualified mentor here in Macon that is willing to at least meet him so we can get the ball rolling. Last week, I dreamed of his wedding. It was unsettling to say the least but reassuring just the same. He later told me that when he is done with NGYC his goal is to join the Marines. Which made the fact that in the dream he was in full Marine dress uniform for his wedding, a bit more unnerving.
• I wish I was more tolerant of having two teenagers with two different musical preferences in my home. Honestly, I have to hand it to my parents. They rarely complained when my sister had her music blaring from one side of the house and I had mine baring from the other. In their shoes I would have gone completely insane.
• I think I’m finally getting sleepy. I’ll attempt something more interesting and upbeat tomorrow.

Ciao for now.~

My apologies for not following up for days. I’ll go into more details later about all that has occurred in the last week. Just a quick bullet fest to give you a general idea:

• Baby Boy is now being homeschooled. We’re using the most excellent online curriculum Time4Learning.com.
• PMS started last week, which for whatever reason also triggered a bad but of IBS. Four menses since the first of the year is a bit draining on the stamina.
• Dr. increased my dosage of Xanax, which decided to play hell with Soma. I’ve been sick. Really, really, horribly sick.
• Being this sick is not good when finally getting the opportunity to help a dear friend bring some sanity into managing her very fabulous business while freeing her time to do the work she loves to do and does so well.
• Sometimes I HATE emergency rooms. When you haven’t kept food or liquids down, not even Emetrol or just plain water for well over 24 hrs, which means you haven’t been able to keep down any of your meds and you’re still sitting there waiting for over 3 1/2 hrs. it’s just enough to make you mad enough to go home and be miserable there and just sit in a room with humidifiers and suck on wet washcloths until it’s over.
• Tomorrow night, we have to take Baby Boy to have an MRI of his brain done. Both with and without contrasting. There is a strong possibility that his mood disorder is not organic in nature but actually something physically wrong in his brain. Dealing with that is, well, I’ve yet to figure out what it’s like other than frightening.
• Hopefully I’ll be as fully recovered as possible by Friday. That is, if the rest of the boys can figure out that actually being nice to each other and being calm in the house makes Baby Boy’s “episodes” much less frequent.
• For 3 years, I’ve wanted a desktop zen garden style fountain. This week, my cat received one but I got to pick it out.
• For over 5 years of being with Joseph, I’ve given hints. Lots of them, about how I would occasionally like to be treated to flowers or a card on holidays. This year I got pink roses. Another cat is stealing them one at a time and hiding them.
• I need to get some very important links and info added to the sidebar over there. But it is a bit low on the list of priorities. Which is something like this:

1. Get the FMS back under control.
2. Get Nate through the MRI without the noise triggering an “episode”
3. Get this Rx incompatibility worked out so I can actually get some work done.
4. THEN get some little things done around the old blog here.

Guess I lied and this hasn’t been a quick list. But it has been brought to you by today’s letters: X, Y, and Z.

• The sleep study was aborted. I arrived at the hospital at 21:45 and was all wired-up and ready for sleep. Just as I dozed off my teeth & jaw started hurting. The kind of exposed nerve pain that makes every bit of your body light up in pain and makes you want to pee your pants. I fought it off and attempted to sleep until 02:30 at which point there was not going to be enough time to complete the study should I have happened to fall asleep. Until next time, I suppose.
• I need to rebuild my blogroll. Please, don’t be offended if you used to be on there and currently aren’t. You will be. Most likely sometime Monday.

Tonight’s the night. Yay, me! I can’t sleep if I feel restricted in anyway but I’m supposed to sleep tonight with electrodes and wires taped all over my head and face?

On the bright side, it’s a night where I can attempt to sleep with out fighting off head-locks, elbows, toes and knees or just simply my knee caps being used as foot rests.

I’m going to ask for a copy of the snore recording. If I have to be humiliated enough to have my snoring recorded I’m going to want a copy of it so I can laugh at myself later.

Another bright side? Since my doctor added Cymbalta to my daily cocktail of pills for pain relief and to stop muscle spasms, the Soma now makes me feel stoned when taken as regularly scheduled. I’ve tried going back to three times a day on the Soma but that doesn’t control the spasms. So it’s a choice of being in pain w/tight muscles or have relaxed muscles with nerve pain. I’ll take feeling stoned for now.

One more funny poke at myself, it’s a good thing by husband is into kinky industrial-gothic-bdsm type things because otherwise there is no way in hell the fashion conscious 16 year old girl in me would ever wear such a thing to bed let alone a guy see me with it on.

Early in December I decided to go ahead and switch domain registrar’s for wild-heart.net and got it moved over to Blogs About where the lovely Lisa has been hosting our domains for the past 3+(?) years. In the process of doing that, the old familiar urge to blog about silly and stupid things has returned. Luckily, I was able to convince Lisa to release this layout to the public. Thank you, muchly!

I hope this time it’s a smooth ride. It feels good to be back “home.”