Tuesday, January 15, 2013
My Rebif injections are delivered by UPS. I hate when they pull up to my house because I know there is another three months of my life in that styrofoam cooler. More pain, and mood swings. I swear when I look at all my injection sites I look like I've been attacked by an octopus. I joke that my bikini days are over because of all the quarter sized dots on my body.
I joke a lot to offset my absolute hatred of these injections. Hatred is a strong word I know. I never allow my kids to say that word. It's hurtful and too harsh for casual conversation. So trust me when I say I hate these shots. They are a constant reminder of my disease. They cause me pain. They screw with my head and emotional well-being. They cause me to face this disease everyday. The thought of having to do my shot is on my mind from the time I wake up that day until that evening. The next day I have to deal with achy muscles, sadness, and just an all around blue mood.
I have tried all the little mental tricks of convincing myself that it's worth the pain. "they keep me walking." "They make me a fighter." "I'm stronger because of them". Doesn't work for me. I have tried changing my schedule around to compensate for the day after, but I have kids, dogs, and a life. My only motivation is that my doctor shames me when I don't do the injections as prescribed. He actually has the nerve to bring my kids, and my husband into the conversation. Saying things like,"You want to stay healthy for your girls and husband don't you?" Curse him. He's lucky I respect him. I wonder what my dogs would think of him?
Monday, January 14, 2013
My only saving grace believe it or not is running. Yes, I have MS and run.
When I first started running a couple years ago it was very scary for me. I was self conscience about my gimpy gait, and how slow I was. It didn't help that I didn't fit the image I had in my head of a runner. I'm short, and and have what I like to refer as a "donkey butt". I always wore baggy sweats and earbuds. I kept my head down on the trail and hugged the edges. My husband was a great support to me and encouraged me a great deal. Soon , actually months later, I noticed I was getting stronger and could run a little farther. My first 5k was such a rush. I was certainly at the end of the pack, but I ran the whole thing and finished. I was hooked.
I don't hug the edges of the trail anymore, and my music is my own breathing and footsteps. I only run trails outside, the fresh air and sunlight do so much for my soul and give me strength.
There are days (weeks) that I can't get out and run because of a relapse or I'm just too fatigued. It sucks because I feel like I'm always starting over, but I haven't found anything that truly makes me feel strong like running. Not only physically,but mentally too. I don't have to think about doctors, infusions, or shots. I have to concentrate on my breath and the path ahead of me. I don't think about my limitations and all the things I can't do anymore, I just breath. It's freeing for that 1 hour a day. I'm never going to break any speed records, or run the Boston Marathon, but that's ok. I feel proud of what I can do.
Wednesday, January 9, 2013
<p>Do you remember Melanie Wilkes from Gone With the Wind? She was so sweet, forgiving,&; and thankful for everything. When she was giving birth and Atlanta was burning down around her she didn't want to be a bother. When she was dying she kept on about poor Scarlet having to take care of her all the time. I always wanted be like her.<br>
Yeah well, as it turns out, that is not me.</p>
<p>I'm a big believer in speaking up for myself when I don't feel well. I wasn't always great at that though. Early on in the first several years of my diagnosis I wouldn't call the doctor right away even though I wasn't able to walk. If I was experiencing fatigue so severe I was sleeping 16 hours a day I would just blow it off as being tired. I had the notion that this stuff would go away and my doctors had more important patients. I didn't want to be a bother. If I did make the attempt to call I would always have to leave a message and wait for the nurse to call me back. Sometimes I would wait a whole day for a return call, but instead of making a second call I would wait. They were busy I didn't want to be a bother. Instead of letting my doctors office know what I needed, I just assumed they knew and would take of it for me. I was wrong.
I have had some pretty crappy experiences in the past with various doctors. Some were my fault for not being clear enough about my symptoms. Now when I call my doctor's office I leave a message explaining in detail my symptoms, how long I have been experiencing them and if I am willing to come in for infusions or not. When I am in the office for my check ups I answer honestly about how I am really feeling. If I have been crying three days a week for the last three months I'm not embarrassed tell him. He can determine if it's a side effect of the disease controlling medication I'm taking or something else. I lay it all on the line about every tingle, numb toe, stumble, verbal bumble and fall. It's not a bother it's his job and he wants to do it well.
Some were where the office drops the ball. I have had to learn over the years it is not acceptable to wait more than 24hrs for a return phone call.
It's not acceptable to "wait it out" for a week, like I've been told before. It's not acceptable to be told my symptoms are really not as severe as I make them out to be. Those are just a few examples from past doctor offices.
I would like to add a thing or two about insurance companies. If they deny a service, medication or even a doctor you have the right to appeal. Do it. I have and been able to get them to concede to many of the things I needed. For instance, my neurologist is not on the list of their proffered providers, in addition, the only hospital he visits is the one attached to the medical college where he teaches and practices. I have been able to get the insurance company to cover the hospital visits and out patient services, and I pay a small out of pocket fee to my neurologist.
I have learned to stand up for myself and demand the best care I can for myself. The more I think about Melanie Wilkes the more I see she was a strong woman in her beliefs. In the end she died with dignity and the love of her family that she was so fiercely loyal to. And, she didn't let Scarlet take her man! That's the kind of Melanie Wilkes I strive to be.
Tuesday, January 8, 2013
I almost gave up yesterday. I was ready to quit everything. Running, not wasting my time anymore. Blogging, who cares what I have say, done with it. Cooking, why bother no one likes what I make anyway. Cleaning, bah the same messes just keep coming back. I was done. My hair appointment, pointless, not going.
I was feeling salty and pretty sorry for myself. Why? I don't even know. I was tired. At least that's what I think. I was tired of not being able to run for almost two weeks and knowing when I went out again it would feel like having to start over. I didn't want to write anymore because I felt like even though I have been dealing with this crappy disease for over 20 yrs, others knew more and were probably a lot more helpful. I don't even know if anyone reads these posts. Making dinner was a hassle because I just couldn't think of what to make. Honestly no one really complains about what cook, I just didn't want to put the effort into it.
All these things were just my body's way of telling me slow down. Go easy on yourself today. It's just so hard for me to listen. I'm very hard on myself, especially since I don't work anymore. I feel like I should always be doing something useful and significant or I will be perceived as lazy. The thing is it's all in my own head. My family never criticises me for what I can't do. They never judge me or talk down to me. I do all that to myself. I'm still learning that I do not deserve to treat myself so poorly. This disease is not something I can control. I did not bring this on myself. This is not a punishment.
So in the end I made an easy peasy dinner for the family. Everyone ate. I ran the sweeper. I got my hair done, and came home to ooohhs and aaaaahs over my sassy new do. I ended my night with a rousing game of UNO with my hubby and 11 year old. It got quite loud and I'm still convinced there was a conspiracy because both were merciless on me with the draw2 and draw4 cards.
This morning I pulled my running clothes out said to myself, "oh what the hell, I might as well try". I ran 3.4 miles. It was hard. I feel damn good, and as you can see I'm writing. I almost gave up yesterday. I got over it today.
Monday, January 7, 2013
My husband and I chose to have kids even though I had been diagnosed with MS. Not everyone was supportive of our decision. What if you can't take care of them properly?" What if you have to go to the hospital a lot? Do you really think its fair to the child to bring them into this situation?"
The question for us was never should we have children, but when should we have children. As it turns out our first daughter was born about fours years into our marriage, and our second little girl came around 2 years later.
Both pregnancies were very normal. I actually felt pretty great being pregnant. I felt healthy and "normal". Once the girls were born I nursed each of them for a little over year. I think that helped me ease my body into a not pregnant state, and avoid a major relapse that my doctors warned about.
Of course I have had some wicked relapses over the years since the girls were born, but this being their "normal" they've been able to take them in stride. Both girls have gone through the stage when were around three or so when they wanted to "help" me walk with my cane. That never ended well,haha. Usually around ten they wanted to watch me give myself my injection, now the drama queen teens think it's gross.
My kids give me strength. I try harder to take care of myself for their sakes. I want to be a good example of a strong woman for them. They are also so wise in their honesty. When I'm tired and fighting a nap my now 15 year old usually says something like"go take a nap because if you don't you're just gonna be awful". Well alrighty then.
They take my limitations and little quirks in stride.
My husband and I are very open with them about my illness and treatments. Of course there have been bumps in the road. During one particularly bad relapse when my youngest was about nine years old I was hospitalized for IV steroids for 4 days. She was very upset and couldn't sleep or eat the entire time I was gone. That was one of the lowest points during my illness. I hated knowing that my being sick was causing such turmoil for my little girl. I spoke with my doctor at my followup and came up with a plan for outpatient treatments from that time on.
As a family we have had to make many concessions to this disease. I am not always sweet- suffer- in -silence- sally- sunshine, but that's ok to them because more often than not we have a lot of fun and tons of laughs.
I titled this blog Growing Up with MS, because not I had to grow up with this disease, but my children have had to also. They are growing into smart, sensitive, tolerant and very open hearted young women in spite of and dare I say because of MS.
Friday, January 4, 2013
"I walk around always alone. No one to talk to, no one to help, I don't want pity I just want to be happy with me, but I don't know how"
" when I die no one will come to my funeral. No stories will be told about how I made a difference in anyone's life. I have no friends, the people I thought were always gonna be there won't. I'm a wasted excuse for a life, waste, insignificant, hollow,nothing."
Those are just a couple entries, but there are many more just like them. Why?
Applying for SSDI is a rough process. Not just because of the fact that it's hard to get approved, but the amount of paperwork which is needed. The application is very long and involved. You need medical records, and letters from your Doctor. Employment dates and reasons for leaving. Just gathering all those items is enough to exhaust a person. Then comes the time to actually put it all together and fill out the application.
I think the process of filling out the SSDI application really drove home the fact that I was not able to work any longer. I tried so hard for so many years to be a "productive" member of society. To have it all there in writing, the jobs I lost, the independence I lost, the friends, the sense of safety, things that all slowly eroded from my life over the twenty years MS has been eating away at my brain.
I was actually approved very quickly without having to to use a lawyer on my initial application. I know it helped that my husband is in the military, and our local Congress Woman is very involved with our base. I appealed to her for help and she graciously took an interest in my case. I was lucky. Although I was thrilled to have had my benefits approved and money coming in, I still had that overwhelming sense of loss.
It has taken several years to overcome those feelings, I needed a therapist to help. I tell myself this just a new phase of life. I still get down sometimes like everyone, but I write it down and move on.
If you or anyone you know has these feelings please seek help. Talk to your doctor, his nurse, a local clergy member, a support group, anyone, but don't keep it inside.