Monday, September 30, 2013

MS Right right now

We have a plan. We always have had this plan, even.before we met. I love him; Rafe (my husband, my twin soul, my Adam, my King). Last night when I was feeling helpless when having an MS episode and panic attack, he was there for me even though it scared him so much. We have only been married one year, and most of the time I was healthy so this part is new to him. I do thank GOD for him, though.

MS has changed my quality of life for now. I say "for now" because. No more amusement park rides, no.long car trips without me having to ask whoever to pull off at the next exit for constant restroom breaks when my bladder is acting up. No outdoor activities in the too warm or too cool weather. Intense pain from time to time that hits me so hard. Its a lot. Unimaginable chronic pain. Etc etc etc ( too many things to list)

Rafe is twelve years younger than I am, so I decided to do what my mom did ( to an extent).  I'm his wife and I doubt he'll find another, but I am also royalty; the empress queen of our family. And I will  find my king another queen (but I want to know her and help them in all ways and be sister/queen to her and co-mom to their children while I'm still alive). And everyone knows I.would adore a queen! So it works out perfectly for us lol)



Before my mom died of cancer she asked me to find the right woman for her husband. She lived him so much....it broke her heart to know that she would be parting from him and not being able to protect him, as a wife does....and so I did as she asjed and put my matchmaking (and praying) skills to use. SUCCESS STORY TO BE TOLD AT A LATER DATE BUT LONG STORY SHORT. He is so happy with his second wife and his second wife is awesome and taking care of him wonderfully. She even embraces my children and I, which was part of the package; everything my mom hoped for him. She's my mother's co-wife even though they never officially met. My mother really loved him and I know in my.heart of.hearts my mother, from where she rests in peace, loves Mum, too. .

ONLY GOD CAN JUDGE US AND ONLY GOD CAN BLESS SPIRITUAL UNIONS The future makes me so....anxious at times but my faith pulls me through. My children pull me through. My husband pulls me through. GOD pulls me through. I don't want to miss a moment of my life. "I have MS, it does not have me", is what I constantly remind myself. I have so much more to do, a family to raise and a husband to care for and going hard to fight this #MSMonster.

http://www.gofundme.com/write-4msawareness


I will whisper louder

In autoimmune disease, the body’s immune cells mistakenly attack and destroy healthy tissue. In MS, it’s the fatty protective sheath around the nerves; in type-1 or juvenile diabetes it’s cells in the pancreas that make insulin; in rheumatoid arthritis it’s tissue in the joint.

Currently, the main treatment is to suppress the immune system, an approach that can leave patients vulnerable to infections and cancer. There are shots that are intended to redirect the attack on cells by tricking them into attacking injected protein.  Still, these are "ATTACKS" and most everything that is out there to take has horrible side effects.

I'm still off the shots.  I removed myself from that treatment therapy in 2009 after a MS relapse almost made me lose my kidneys, and the shots did not stop it from getting as bad as it did.

I hope there is other treatment.  I ignore my MS a lot because my caretaker is also my husband, and no matter that I trust him the most, it's sad to see him have to live with my reality, too. I hope to find another caretaker in the future to give him some time to just enjoy having a wife (not a patient).



The pain is on my right side (the same side that went paralyzed in 2004) .  I can't really get a full body massage because my husband has now began to be in a lot of pain, too.  I sometimes wonder if he has MS, too, or if he is just experiencing some of my symptoms (we are incredibly close and have a really tight bond), or if he has something altogether different going on.  We are each other's caregivers and really always have been.  But this pain is too much for me to bare too much longer without repeated relief, which is what my prescribed treatment was since I'm no longer on all of the meds.  I'm supposed to have intense massage therapy to keep me out of most of the pain, but now I feel helpless.  I often cry when I'm alone, just to get it out of my system (the frustration).

I feel like my condition is getting a little worst right now, so I want to make sure I blog while I can still type.  Nobody knows what the future holds.  I hope mine is one that's still happy and loving, just not so much pain. http://www.gofundme.com/write-4msawareness

People

Sunday, September 29, 2013

In complete pain and feeling sorry for myself

In autoimmune disease, the body’s immune cells mistakenly attack and destroy healthy tissue. In MS, it’s the fatty protective sheath around the nerves; in type-1 or juvenile diabetes it’s cells in the pancreas that make insulin; in rheumatoid arthritis it’s tissue in the joint.

Currently, the main treatment is to suppress the immune system, an approach that can leave patients vulnerable to infections and cancer. There are shots that are intended to redirect the attack on cells by tricking them into attacking injected protein.  Still, there are "ATTACKS" and most everything that is out there to take has horrible side effects.

I'm still off the shots.  I removed myself from that treatment therapy in 2009 after a MS relapse almost made me lose my kidneys, and the shots did not stop it from getting as bad as it did.

I hope there is other treatment.  I ignore my MS a lot because my caretaker is also my husband, and no matter that I trust him the most, it's sad to see him have to live with my reality, too. I hope to find another caretaker in the future to give him some time to just enjoy having a wife (not a patient).


The pain is on my right side (the same side that went paralyzed in 2004) .  I can't really get a full body massage because my husband has now began to be in a lot of pain, too.  I sometimes wonder if he has MS, too, or if he is just experiencing some of my symptoms (we are incredibly close and have a really tight bond), or if he has something altogether different going on.  We are each other's caregivers and really always have been.  But this pain is too much for me to bare too much longer without repeated relief, which is what my prescribed treatment was since I'm no longer on all of the meds.  I'm supposed to have intense massage therapy to keep me out of most of the pain, but now I feel helpless.  I often cry when I'm alone, just to get it out of my system (the frustration).

I feel like my condition is getting a little worst right now, so I want to make sure I blog while I can still type.  Nobody knows what the future holds.  I hope mine is one that's still happy and loving, just not so much pain.  http://www.gofundme.com/write-4msawareness

Tuesday, September 24, 2013

Motivation

I need to blog.  I need to tell my story.  I'm trying hard not to dwell on my condition and just merge it into who I AM.  I'll do better but for now I've taken my nightly meds : Zanex, Lortab, and a sleeping aid.  My body is feeling like pins and needles all over and I need to rest.  Most days are good but lately I've been in a relapse that is very painful.



http://www.gofundme.com/write-4msawareness

R&R

In 2004, I was 31 years old and a corporate work-a-holic. I was a care-free mother of three in a committed relationship and my children were living in a two parent household.  Because I had support at home with the children, I was able to go that extra mile to climb up the latter of success.  At the time I was also heavy into my writing (poetry), and everything seemed to be going well for me.

At the company I worked for, I did what I did best; start an organization.  I'm great at creating movements and organizations, and at the company I realized that the staff needed to feel appreciated more to being in moral.  I put in a proposal for a project team called the EAC (Employee Appreciation Committee) and sent it up to management for approval.  Once approved, I recruited some team leaders and volunteers, and once we set up a calendar of events and activities, we were given a budget to improve moral.

Spring was coming up, and Tracy (one of my good co-worker friends) and I were doing a gift bag game for the department.  It took us three weeks to prepare for this event, most times having long hours after work, during lunch breaks, and even on weekends.  I remember feeling extra tired that last week.  We'd been going back and forth from her apartment to my house and all over Atlanta, Ga shopping at different stores to buy the gifts, not to mention we had to have food catered and decorations.

I must admit, we had fun on that day.  But at some point through during the event, I began to feel a huge sense of fatigue.  I'd felt it before just that morning when I was up getting ready for work, but I thought nothing of it.  I made it through the day and my boss even let me off a little early because they could tell I was extra tired.

That was a big weekend at home for us.  My boyfriend at the time had his children over for the weekend, and three of them were there on a first time visit since I'd moved in.  They were nice children, though, and I tired my best to spend time with all of them because he worked a lot. But I was tired.  That entire weekend I kept dropping my cell phone out of my hand or my keys or the fork, and even once I dropped and broke a plate.  He told me to rest while he watched the kids, but it was important for me to be there for my children, too, and this was a weekend I had off work, so I didn't want to slow down.

GOD has a way of slowing you down, though.  I knew I had to be at work early Monday morning since I got off early Friday afternoon, and so I'd gone to bed early, feeling so tired that I could hardly get into bed.  My face even felt tired, and I can remember thinking that I was going to plan a vacation because I was surely in need of one.  Monday morning was slow moving.  I could barely pull myself together.  I took a shower and nearly stumbled in there.  It was if I'd had a hangover, however I'd had no alcohol or anything.

I had a 2000 Pontiac Sunfire, and I drove it from Old National Highway in College Park all the way to Piedmont Road in Buckhead.  Now...the thing is, while I was drying up 85 north towards GA 400 to near my exit, the entire right side of my body not only was fatigued beyond anything I could ever imagine, but it was also paralyzed.  I became paralyzed while driving on the expressway to work, all on the right side.

It becomes foggy at that point.  Everything I've ever gotten, I got for myself so I clearly didn't know what was going on, but I didn't want my car to be stuck all the way out in Buckhead.  I remember as soon as I realized my right leg was gone, I used my left leg instinctively.  In fact, I just drove with the left side of my body, leaning up against the driving wheel and steering with my weight, squinting my eye because the right one was blinded by now.  That's where my mind was.  It was on that car.  And then the thought came up that because I felt like I had a hangover, perhaps my manager would think I was somehow intoxicated.

 I couldn't worry about that because I needed to clock in.  I parked the car, hitting the bumper in the parking space. GOOD, the car was parked.  I got my purse and pulled myself together, and set out for the long haul dragging my right leg and behind the left one as I walked to the building.  I held on to rails, walls ,and anything else I could to get to the elevators.  I knew if I could just sit down upstairs in my desk, I could figure out a way to make this work and pull myself together.

Somehow I made it up on the elevator to my floor. I dragged myself into the suite and to my cubicle.  We had high walls, so I was really happy about that because by this point I figured I'd had a stroke.  I just wanted to get thought the day. I was working on the call center side, and it was obvious that I wasn't going to get through the day because the first call call in and I answered the line and nothing but slurred speech came from my lips.  My manger stood up immediately and took over the call, then I she transferred the calls to another call center temporarily and came over to me.  She looked at my face and as soon as I saw her facial expression, tears began to come out of my left eye.  I scribbled onto paper with my left hand as best as I could (I'm right handed) I AM NOT DRUNK. She said "you look like you have Palsy, your face is falling. You need to go to the ER" .

My mind was going all over the place and i just could not phantom going to a hospital on that side of town, so far away from my family and my children so I made up an excuse about my sister being in the same building and because we were the only two people in the call center at the time, she helped me to the lobby and asked me to way there until my sister came back.  She scribbled her number onto paper and told me to give it to my sister to call her for updates. I nodded, crying.  I knew she wouldn't have left me there had we had someone else in the office, so to me luck was on my side and as soon as she went onto the elevator , i dragged myself back out to my car and set off back home with only my left side working.

I made it to my driveway and in order to stop the car and park it, I had to hit the garage a bit.  I was so tired and so frazzled.  I had no pain but I had no feeling or eyesight on the right side.  I called my cousin on the cell phone and began to speak/slur.  She asked me if I was home and I said yes and she told me not to move, she was on her way. I climbed out of the car and just crawled to the house, dragging my limp body to the door.  I pulled myself up to put the key in the door and when the door opened I fell inside.  I was tired. I was done moving.  I closed my eyes and said my prayers, and just faded out.  When I came to, she was panicking and trying to lift me up.  She thought I had a stroke and said we needed to get to the hospital really fast.

GOD had seen me through to get me back home to my family.  The next few hours would change my life forever.  Once we got to Southern Regional Hospital, I could barely stand.  My cousin answered the questions there and they kept asking me if I'd taken drugs and after awhile in my slurred voice i began to scream "I AM NOT ON ANYTHING. I AM A PROFESSIONAL.  SOMETHING IS WRONG.  I DON'T WANT TO DIE".  They ordered a MRI and within the next 45 minutes as I waited, I prayed a lot.  When the doctor retired, he said they'd found seven legions on my brain, and that I'd been diagnosed with Multiple Sclerosis, also knowns as MS, type RR (Relaspe/Remission).



I spent the next few weeks in the hospital.  I felt very sorry for myself. I was angry, also, because there is no cure for MS and I've never had medical problems before.  Nothing nothing about the disease, my doctors and my aunts and family researched as much as they could.  Apparently MS was a disease that was composed of a lot of symptoms which anyone could have, but there is also a lot of dysfunction of organs and a lot of pain....enormous pain, seizures, emotional hell.

Looking back, the previous month I'd had the first shot of a three part series for Hepatitis B injections (the vaccine). Once I could walk again, I went back to my primary doctor that administered the vaccine and asked to see the packaging, and the labeling said it could be linked to MS.  I was so angry with her.  She said that it was irresponsible for he hostilities to tell me it could have come from that vaccine and I pointed out that though I wasn't going to sue her, she needs to know my life will never be the same.

I must say that now, in 2013, I forgive her.  She didn't know.  Nobody could have.  I have to believe that.  It's been a long road and it still is.  I've been on so much medication in the past until now I'm concerned about the affects they could have in the long run on my organs.  There's a lot to say about MS and my walk with it, but the main thing is that I no longer want to be silent about it because now at age 40, I know that MS Awareness is the only way to bring light onto our cause and prayerfully one day find a cure.

Love and Light,
Attica Lundy Cooper aksa Caren Cooper

http://www.gofundme.com/write-4msawareness