As a young girl I watched my dad use a cane to walk out to his car to go to work. I was about 5 years old and would wave good bye before walking to school. A few years later,I was about 7 and watched my dad walk to his car using a crutch. Not one that someone might normally see someone using when they have a broken leg. This one was like a can, and the person would put their arm through a brace to help them steadily use the cane. He struggled more this time. But he made it.
Dad had Multiple Sclerosis and it was chronic progressive, meaning, he suffered a slow deterioration. By the time I was 9/10, he was in a wheelchair. When I was 14, we had to move to a new home that had wider doorways for dad’s wheelchair. By the time I was 15, he had suffered frontal lobe damage to his brain. This meant that he had short term memory loss and his emotional responses were off, so to say. My mom attempted to get me an early driver’s license because of dad’s MS. But that did not happen. By the time I was in College, he could barely feed himself. My mom had asked from the insurance company if they would provide a home nurse to come in 2 hours a day, 5 days a week to get my dad up, dressed, and make sure his pills were taken. Mom would make him breakfast and let him eat in bed before she would go to work. The insurance company denied the request, stating that that was the spouses job to take care of him. They didn’t care that my mom was working to try to pay the mortgage, utilities, and medical bills. So, mom paid a member of our church to come and make sure he was up and out of bed in the morning. God blessed us with a wonderful woman to do that, who would take time out of her day to stay with my dad until he had eaten lunch, or come back if she had errands to run to make sure he was taken care of. Mom started paying her for that time as well, but there was only so much that she could do and pay.
My dad continued to get worse over time, to a point that we had to take a velcro strap and ‘tie’ him back in the chair (his request, not ours) to keep his body straighter so that he would not be compressing his lungs and could breath easier. We had to buy modified utensils so that he could feed himself and large remote controls so that he could see the buttons and press them to watch TV. My dad was a brilliant man with a wonderful mind. He was forced to retire from the University, due to the handicap. The University said that the students would never listen or respect a professor in a wheelchair. Back then, they got away with that. They would not now.
My dad ‘walked’ me down the aisle for my first wedding. My mom controlled his wheelchair, so in a sense, they both walked me down. It was so important to my dad to be able to walk me down that aisle. He just beamed. He understood just under 2 years later when I left my husband, why I left, and did not judge me, just supported me. (Sidenote: my whole family supported and understood, but this post happens to be about my dad.) When I met my current husband, my dad was leery at first. After all, I had chosen poorly with my first marriage. He talked to R when we were first getting serious in our relationship, and asked the dad questions “What are your intentions with my daughter?” and “How will you provide for her?” Makes me smile and tear up as I remember it. Then something miraculous happened; Dad realized that when R talked to him, he looked him right in the eye, and TALKED to him. None of the other boyfriends I had had did that. R enjoyed talking current events, politics, history, sports, whatever Dad wanted to talk about. R respected my dad, despite his condition. R had Dad’s approval to marry me. (This was months before I considered marrying R. He had to get my approval as well. 😉 )
After I married R, we wanted to start our family right away. I wasn’t getting any younger and we knew it would be more difficult. I was blessed with getting pregnant 4.5 months after trying. My dad was so excited. His first grand-baby was on its way. R and I tortured everyone by not finding out if baby was a boy or girl. So my dad went crazy trying to buy neutral items. Mom had to slow him down. But one particular gift, a stuffed seal from Sea World, was his choice as the special gift to his new grand-baby. (We still have that stuffed seal) I had our first daughter just after our 1 year anniversary. My mom was with us when I had her, and my sister was staying with my dad to make sure he was taken care of. My dad made my sister drive him to the hospital, about 2 hours away, the next morning so he could see his new granddaughter, A. He was beaming at his new granddaughter. 7th heaven. About 7 months later was Mom and Dad’s anniversary. My sister and I planned a party with all their friends, knowing my dad would not make it to their 50th. One of my favorite pictures of all time of my Dad and A was taken that day:
A tended to be afraid of Grandpa’s wheelchair, but she loved him and would go to him when he wasn’t in his chair. 5 months later was A’s first birthday. Took all of Dad’s energy to come to it, and it was the first time that A went to my Dad, in his chair, that she didn’t cry. She happily went to him. My dad BEAMED. 4 days later, I got the call from my sister, my dad had passed on. He did not get a chance to meet his second granddaughter, who was born 9 months later.
Moving forward a few years, my husband and I built a home together. Most of it was done, we were allowed to live in it, but with money being short, the finishing touches were delayed, including a sidewalk out our front door. A was 5, and in Kindergarten at the local school. I was working nights, and seemed to be consistently tired. I went to pick A up from school after a field trip and I stepped in a hole on the school grounds and down I went. Bruised my hands, face, knees. Was a pretty bad fall. Recovered from that and was leaving one afternoon to go to work, and my husband, being the wonderful man he is, put pallets from the door to my car so I wouldn’t step in muddy puddles. I mis-stepped one of them, and down I went. This one was bad enough that hubby came running out, picked me up and carried me back inside. I was pretty scrapped up on this one. We got me cleaned up and I drove to work. I hurt a lot for awhile on that one. But eventually, recovered, or so I thought.
Fast forward about a year. I start to notice that when I stand for a length of time, my toes start to feel numb. If I wear heals, I can’t stand or walk for more than 10 minutes, as my toes start to numb and start to tingle. It then went away. Thought it was odd, but when it went away, I forgot about it. But it would consistently come back. I finally went to the doctor about it again. (I had gone before, but no broken bones, so he gave me vicadin and sent my on my way.) I went to a new doctor this time, and he was concerned. He sent me to an Orthopedist and physical therapy. Making this already long story short, after almost a year and 4 MRIs, he declared me a mystery and sent me for an MRI on my leg, not my back. He never did contact me again. My insurance company contacted me to find out what was going on. I told them, they referred me to a Neurosurgeon. The Neurosurgeon was completely baffled as to why they were spending so much time checking my spine when that wasn’t the issue, it was my leg. He sent me for an ABI to rule out a blood clot in my leg. Here’s where it gets odd.
I go in for the ABI, which is where they take your blood pressure in both legs and arms. Note the Systolic (higher number) and evaluate from that. Left leg-127 (normal to have higher bp in legs and is expected), right leg-87/112/102, both arms – 109. Now note that he took my right leg 3 times, in less than 10 minutes, by the way. He only used the last number of 102, which the person that writes the report, doesn’t know the other numbers. Talking to my Neurosurgeon yesterday, he was quite concerned by the numbers, since the higher number puts me borderline a concern for PAD (Pulminary Artery Disease – Read: blood clot). The low 87 number puts me at a more likely risk. So, he wants more tests done. As he’s listening to my symptoms, he determines he needs to rule out MS. My husband said under his breath, “Wouldn’t that be ironic.” And he’s right, it would be.
Now, before anyone says “Well, it runs in families…” I don’t know if it truly is a genetic thing or not, but that doesn’t come into play here, because I was adopted as a baby. That is the irony.
Do I think I have MS? It’s crossed my mind, but I’m not convinced I have it and I will not be convinced I have it until they say “Yep, it’s conclusive, you have MS.” It doesn’t do me any good to worry about it, so I won’t. God has a plan for me, and I just need to wait it out. In the meantime, I’m on this awful stuff called Lyrica for the pain, which in one day hasn’t done anything, not that I expected it to do anything good right away. Instead, it’s made my foot heavy, and I can feel my foot there, but it doesn’t feel like it is there. Yes, I know, weird. I’m waiting for my insurance to approve the next tests and we’ll go from there.
I think this is the most I’ve EVER typed in any blog or post or journal, so I’ll end for now.