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Tag Archives: extreme fatigue

Yeah…I’m a Star Wars geek.

Day 294: Right hip.
Injections to the hip always suck for me, even after 82 injections to the hips.
There was no site reaction, no itchiness, just the the “OH WOW THAT SUCKS!” sting of the injection.

Went to see my pain management doctor today; got scheduled for a few injections to my spine. Yipee *can you feel the sarcasm?* But, a little pain to get rid of the knife wedged between my vertebrae is well worth it.

Visited my new neurologist today too. Was very surprised that he spent 45 minutes discussing my disease, the diagnosis, the events surrounding the diagnosis. The doc was like an MS detective. I was really happy to see he was very knowledgeable about MS, research, new drugs etc…even though I’m his only MS patient.

After completing my physical examination; reflex, sensation, etc. He came to the conclusion that my back and leg problems were not caused by MS but, rather my obesity. I explained to him that I had gotten my weight under control on several occasions, once losing almost 100lbs. through a vegetarian diet and exercise but, my inability to exercise now was hampering any serious weight loss. He advised me to give it an honest try at losing some weight on my own again.If my mobility issues became a problem he would recommended Lap Band surgery and said he would aggressively seek it through my primary care Dr.

The thinking being the weird nerve sensations I feel, aren’t caused by my MS but, rather by my extremely high blood sugar. My leg weakness and knee problems, fatigue, etc. all problems reduced by losing weight.

Well, I’m not totally for it but, at least it’s not vanity causing me to do it. And the band can always be adjusted once my weight is under control. 😦

The Neurologist also ordered some blood work, wanting to be sure of various things before putting me on Gelinya, the oral MS disease modifying therapy. So no more needles after the blood work, no more self injections. This, the doctor said, was the one thing he could do on my initial visit. Since, I had been reffered to him following an MS event, he had no fear of disrupting a treatment that was working well for me.

He asked about my progression, commenting “Yeah, that’s what it does, picks you apart.” When I bumped into him trying to climb the examination table and said “I’m sorry”, he grabbed me by the shoulders, helped me position myself on the table, and replied “You, have NOTHING to be sorry about.You’re sick.” Echoing what my big brother says every time he hears me apologizing for everything.

On a side note: When I switch from disease modifying therapies….what will I call my blog???

Dr. Lamazov also said he’d brush up on Ampyra, the MS walking drug, for me because he didn’t know enough about it to comfortably write dosing amounts, etc. Wow, a doctor who, not only obviously had been paying attention at the beginning of the visit but, was also open to learn a little more about what I wanted. What an AWESOME neurologists’ visit.

TODAY WAS A GOOD DAY!

BE WELL, LIVE WELL, NO REGRETS

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How do you prove you are willing to do everything you can for someone, and that you’ve changed when the outside forces you can’t control make you seem like you haven’t.

My son’s mother had suddenly changed her tone on texts and we were having dinner and watching a movie. All very friendly. Friendlier than we had been in a long time. Suddenly a noise. she runs to see what it is and comes back with my cell phone, tosses it in my lap and says “you better answer her she seems mad.” Goodbye followed shortly after. My awkward attempt at a goodbye was “sooo, um have you met anyone?” “No I haven’t met anyone, not really” was her reply as she hugged and kissed our son farewell. WHAT AN IDIOT I AM!!!

I can see the thought formulating in her mind. ‘He’s only after me because he’s afraid I’ve met someone and he wants me to answer him because he doesn’t want to move forward without a final chance’. I can see this because four months ago I DID DO that and she egged it on “go be with someone else” But, when it happened she became so mad, our peaceful separation and midnight rendezvous became few and far between and more angry. I had betrayed her…I guess I was supposed to have stayed happy with just sex.

Today, I thought we had taken a step towards being friends. Spending time together was good until an unwarranted, unwanted text message ruined the moment. Though looking back on it, it wasn’t particularly a perfect moment. I guess nothing ever really was.

I missed my Copaxone injection today. All I wanted to do was sleep once our night together ended and it seemed like my son was on his way as well. So we slept. He’s still peacefully asleep while his daddy stays up, since two a.m., morning the emotional lose of his mother.

Let’s touch on some basics:

BE WELL: When you are healthy, even when you are fighting a chronic illness embrace it. Grab those moments with both hands.

LIVE WELL: Live up to your abilities and beyond if you can. You never know when they’ll no longer be there.

NO REGRETS: Regret will kill you as sure as disease. If you have a doubt about the morality of what you are doing. If you’d be ashamed if your child DID what you are doing or about to do. Don’t.

BE WELL! LIVE WELL!! NO REGRETS!!

Funny how I sometimes have a hard time remembering yesterday. But, I can remember the day and way I met someone, well, what seems like an eternity ago. I remember meeting my son’s mother (insert HOW I MET YOUR MOTHER omg here). I remember how we drove around in her car, with me trying to hold her hand and kiss her at every red light. I remember when she got a call from her little sister and she asked me if I cared if we went to pick her up at her boyfriend’s? I remember waiting in the car with my AFI hood over my head as she described how her sister’s boyfriend had hit her sister. And keeping that hood on the entire time while we drove her home and she went in to her parents’ house.

I remember all of this, painfully, wishing I had known then what I know now. So I could have approached the start of things differently, and maybe the whole thing would have been different.

But the past, as they say, is a memory. We aren’t together anymore. Haven’t been since this blog was started. She couldn’t forgive my past sins and when she felt that resentment…she couldn’t resist the push apart. And I don’t blame her. I ache over it. I resent the moment of it as I was returning home from an MS-forced hospital stay. But, I truly don’t blame her for any of it. Not all sins can be forgiven or reconciled.

“When routine bites hard. And ambitions are low. And resentment rides hard. But, emotions won’t grow. And we’re changing our ways. Taking different roads. Love, love will tear us apart again.”

Day 289- Left Hip
Today was a bitter sweet day. I had to cancel taking part in today’s, this year’s Walk MS. It hurt to have to miss this event to raise awareness, I’d been “training” for the walk by using my own two legs and cane to get around everywhere for the last 5 months. I said NAY to the scooter at the supermarkets and WalMart, it got tough at times but, I muscled through thinking of the Walk MS event. So, not being able to participate today was a let down.

On to the sweet side. Today was my niece’s daughter’s 1st birthday. Fun time was had by all. They had a Build-A-Bear station set up. Actual Build-A-Bear, not a knock off. They had magicians, they had cotton candy spinners, a Strawberry Shortcake character running around, it was a wild first birthday. Seeing all the fun my little guy had at the party was awesome. So it was definitely a sweet ending.

Be well, stay well, no regrets.

If you can keep your eyes open for longer then 10 minutes or so at a time and your not being asked if you’re OK every time they are open. I have Multiple Sclerosis, of course I’m OK. It’s only a chronic, incurable, debilitating, auto-immune disease of the Central Nervous System. Everything about knowing that your own body is trying to put a stop to you, is just fucking OK. But, I digress, my day didn’t start off this way.

I woke up 2 hours after I fell asleep and then when I had just started to fall asleep again, my little boy tapped me on the head and said “Daddy??” So that was how my Saturday morning began. Tired as hell, the worse migraine EVER, and 10 50mg Prednisone pills for breakfast. And let’s not even talk about the skyrocketing blood sugar levels of over 450 that come with mass dosing of steroids. But what’s the risk of sugar shock and death when compared to keeping some of your CNS control? And on that end it seems to be working as I have regained strength and control of my left leg exponentially.

Afternoon went well, my friend and the kids came over to spend some time with my little guy, who loved every second of their visit. Unfortunately I couldn’t really keep my eyes open for a lot of it. I’m glad my parents where there to keep them company because, I was a shitty host. 2 hours sleep and the meds did not a great host make. Thankfully, my friends are good friends and stuck around to keep me and the little guy company. They even called my pharmacist and doctors to ask about my elevated blood sugar. Needless to say I stayed home despite the advice and desires of all involved.

I had a good day, despite the set backs, my son had a great day, as always. The Rangers made the playoffs, the Mets won tonight, finally. And my parents stopped trying to get me to go to the hospital. All is well in the world. Now if this fucking headache would just lighten up a little.

Be well, stay well, no regrets.

I spent the better part of yesterday, 3pm to 12am, in an uncomfortable bed in the Emergency Department of UMDNJ. I felt an exacerbation coming on and went to my doctor, who agreed with me, that the symptoms that brought me to his office might very well be a flare up about to happen, or beginning to happen. As, UMDNJ has the leading MS Clinic and Neurology department in the area, not to mention my neurologist is a professor/doctor there, we decided it would be best to be proactive. 9 hours later I was starting to regret the decision.

It became an extremely detrimental day. First off, I love my father but, being the youngest of his children he goes into ANYTHING involving me as if I was still a toddler. Being a toddler might be something alot of people would prefer but, I’m a 34 year old surviving with MS. First example, after going for my MRI or sausage stuffing experiment, as I like to call it. For some reason the foremost neurological hospital and teaching hospital can’t afford more modern MRI equipment. If you ever had the misfortune of having to recieve an MRI at University Hospital, the MRI machine is a small, small, did I mention small, little tunnel. I had to contort my arms into my chest and get stuck a few times on the way into the machine. My hep-valve, IV start point, dug into my right elbow as I was squeezed, and squeezed myself into the chamber. After a half hour session it was time for another half hour session WITH contrast. I was wedged and wiggled my way out of the MRI tube, injected with “dye” and wedged back in. A horrible mechanical grinding let us know it wasn’t happening a second time. The MRI had been broken the first 3 hours of my visit and the technician didn’t want to risk stuffing me back in, only to have the machine break again while I was IN the machine.

After that hellacious adventure; my father decides to interrogate me, at least it felt like an interrogation,about what they were and were not able to see etc., etc. All things that I have no clue about but, at that moment after escaping my claustrophobic experience, I was supposed to know to please my father. Sorry dad. We get back to my little sliver of the Emergency Department and I need to piss. I tell my dad, “please, get a nurse with a urinal or I’m going to pee myself!!” My dad spends the next 5 minutes saying “excuse me” and ignoring the doctors who stop to listen, because HE NEEDS TO FIND A NURSE NOT A DOCTOR. He finally finds a nurse, gets a urinal, and STOPS short of handing me the urinal to explain to the nurse why he asked her. I tore the urinal from his hand and unceremoniously hid behind the curtain and relieved myself. My dad walks in and has the nerve, or audacity, or lack of urgency of the situation to chastise me for being rude and snatching the urinal from his hand. Long story short he leaves the Emergency Room and gets my mom.

6 hours later, a neurologist walks into my curtained box and tells me the they couldn’t find anything active on the MRI but, I would need to get one WITH contrast to actually be able to tell without a doubt if anything was active, especially if there was slight activity. They prescribe me Prednisone, about 5,000mg’s worth over a 6 day course to stop any auto-immune activity that may be present and send me on my way.

When I say that I couldn’t have made it through the experience without my parents and friends texting me the whole time, it’s not just being cute. I would have gone insane without them. The Emergency and Trauma wards of University Hospital reminded me of the hospital in The Misfits “Scream” video, AFTER the zombie band come back

Day 278- Went well injection-wise. Loaded up my auto-ject and easily injected the back of my arm.
Had a pretty bad day overall. Started to lose the strength in my elbows doing some light exercise. Then almost lost my knees in the shower. I barely made it out of the shower, pretty much became a wet noodle.

After some relaxation, that didn’t return any of my strength it was time for dinner. The pizza I ordered from, the newly opened Pizza Hut, never arrived today. It was 55 minutes for the normal wait and after 75 minutes I called them back up and discovered the order had NEVER been placed! The person I spoke to the 2nd time offered to expedite the order. They’d have it ready in a half hour. I said no thanks, I’ll order from Domino’s.

So, approximately 20 minutes later we were all eating Domino’s pizza.

Finally, a happy ending.

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