Life after the MS diagnosis

Meisje and I on a walk with Zielle along the banks of the Jordan River.


The last several months have been hard. I have not felt well. I am not complaining; it is simply honesty. In spite of daily shots of Copaxone and a dozen pills a day, I still seem to be hurting. I still have frequent migraines. In the last six months, I have have three relapses. Although each bout has been temporary, I have lost the ability to speak, see, and walk normally. With each relapse, I have returned to normal. Although when I am tired, my speech sometimes slurs still. Most of the time I am able to function so strangers do not notice that I have MS. I sure hope that continues! I might have health problems and be in a lot of pain, but I don't want to look like a freak. :)

I was not getting good care from my previous Neurologist. I switched to one of the leading MS Neurologists. He specializes in MS. He even treats Montel Williams. I am hoping to get better results from his office. Dr. Foley and his staff are working hard to get my MS under control.


When I had my last infusion of IV SoluMedrol, the infusion nurse started to sign to me. She thought I was deaf. I told her I am not hearing impaired. It was simply my MS making my tongue numb. That was so funny!


Yesterday, I could hardly walk because of the burning sensation in my feet, legs (mainly my right leg) and mid section. Today I seem fine. The burning returned to where it usually resides -- my feet.


Last Saturday, I had a particularly good day. I try to get outside whenever I can, because the more mobile a person with MS is, the more MS seems to let that person stay mobile. I like being able to walk and move, so I get out as the weather and my MS permits.




Saturday, the weather was lovely too. My new boyfriend Zielle and I decided to go to the mountains and have a picnic. We headed up Millcreek canyon and we found a place to BBQ some sausages (and meatless ones for Zielle). Meisje went with us. I manned the fire and grilled. It was a spectacular day. Zielle was super impressed that I knew how to build a fire without lighter fluid. I now know my summers at Girls' Camp did some good.



Today, Meisje went to the Vet. He said he had never seen such a healthy pug. He was surprised at how lean and muscular Meisje is. For once, her hyperactivity paid off. Yay, good job, "Monster-dog"!








The fire that Kristen built.











A ladybug on the wood post at the Millcreek campground.

Condo Tour

I know the quality of the videos are not great, but it shows the condo and how very cute it is.

From the front door, you enter the living room.

Behind the Living Room is the Kitchen and Dining Nook.

On the other side of the living room is the hall (the hall closet contains the washer and dryer), bathroom, and bedrooms.

That's the whole place.

New Home

I bought a condo and have moved in. I am currently in the process of unpacking. I spent nearly two weeks painting my new home, with a lot of help from my dear “niece” Se’a (said Say-ah). Se’a is 11, and has a natural gift for all things crafty. So far it is coming together nicely. I am pretty proud of the place. It’s a two bedroom - one bath “penthouse”, in downtown Salt Lake. Meisje is adjusting to the change. She likes the neighbor across the hall that has a little girl and a six month old puppy to play with. I like my neighbor too.

As soon as I get unpacked a bit I will post pictures.

Diagnosis

These last few months have been very exciting. I had a horrible migraine at the beginning of August causing me to be sent to the ER with a droopy face. My tongue also fell asleep and it was hard to talk for a week, until it woke up. After a whole lot of tests, including an extremely painful Lumbar Puncture (Spinal Tap), I was diagnosed with Relapsing Remitting Multiple Sclerosis. MS is an auto immune disease which causes one’s own body to destroy the myelin sheath around the nerves in the body and to damage other parts in the Central Nervous System including the brain and spinal cord.

There is no cure. However, I can significantly slow down the progression of the disease, and keep myself out of a wheelchair with treatments. I now give myself an injection of Copaxone every day. I am not really scared of needles now, but a shot always feels like a shot.
Nothing can be done to bring back the vision I have lost or to heal the damage MS has done to my body already. The reason I lost my vision and the reason my sense of smell is diminished is due to the MS. MS explains the fatigue and generalized pain I always have, my sensitivity to noises, heat and cold, and the memory lapses I get from time to time. I refer to these memory lapses as getting “the stupids”. Another symptom I have is electrical shocks. It’s like being electrocuted from the inside out. This does not hurt much, but it is a strange feeling. I never could figure out what was wrong with me, since I have had symptoms of MS since I was 16. I am glad to finally know what can be done to help me.

Throughout the barrage of tests I was also diagnosed with complex migraines (we knew that one) and sleep apnea. The migraines are very hard to treat, since I don’t respond to the drug class of triptans (like Imitrex). My neurologist and I are trying many different remedies. Most of them don’t work, and I just have to get myself to sleep to get rid of the headache. The sleep apnea should be easier to take care of. I have been to two sleep studies, and I have been fitted with a mask. Soon I will sleep with a CPAP machine that will allow me to sleep through the night. According to the first study I did I was waking up every 90 seconds to breathe.

Moving

Well, as you all know, I live in an apartment. There is at least one benefit: no lawn to mow. There are also drawbacks, (crazy neighbors, someone stealing my parking spot, and no yard for Meisje). I've decided its time to move.

When I move, I have a whole slew of things I need to purchase. Some of these items were slip covers for couch and chairs in the living room. I do not need to spend money on new furniture. That's to pricy for me. I have very comfortable furniture with great, classic lines.

This weekend, I found slipcovers on sale for 50% off!

Check it out! Meisje has even made herself comfortable on the "new" chair.

Park City

It has been so hot in Salt Lake this summer. Meisje and I could not take it. So, we took a ride up to Park City. We walked some trails and then around an outlet mall. Meisje made friends with every child in sight. It was much cooler in the mountains.

Save money on lunch

If five dollars a day is spent on going out to lunch, it equals up to $1,300.00 a year of lost savings. Try packing a lunch the night before and it to work. This does not mean lunch has to be spent working at your desk. Go to a park and eat your lunch, run errands, take a walk, read a book. You can still use your lunch time to recharge and refresh yourself. Why not save money in the process?

Health Care

As most of you may already know, I have health "issues". I have had some chronic problems for more than a decade. It can be very expensive to go to the doctor, even with Health Insurance. I have found out that if I speak openly and honestly about all of my issues (including financial), he or she can help me better.

Here are ways to reduce your out of pocket medical costs:

1- See your primary care physician. Going to an insta-care or emergency room is more expensive. If a specialist is needed, call your doctor for a referral. You don't need to pay an extra co-pay or use your time going in to their office simply to get a referral letter.

2- Stay "In-Network". If you go to a provider who is not in your network, it will cost you more money.

3- Ask if there is an equivalent medication available over the counter for use. Generally this will be less expensive than a prescription.

4- Ask if a generic prescription is available and is recommended to use for your specific condition. Generics are generally mass-produced and are typically the exact same medication as the name brand medication, but with less cost for the insurance companies and the consumer.

5- Ask for samples. The pharmaceutical companies are giving away their products. If you do not use it, someone else will. You might as well be the person saving the money. It will not matter to the pharmaceutical manufacturer who is getting the savings.

6- Write a list of all of the things you want to address before going to the appointment. Waiting on something could be bad for your health, and it definitely hurts your pocket book. Think of all of the co-pays you could save by talking about four items a visit, rather than just one. Movie night anyone?

7- If you do not feel you are receiving the appropriate care or level of service you deserve, find another Doctor! Everyone is entitled to be listened to, heard, and treated with respect. Don't waste your money or your time on a Doctor that is not treating you well or on one who does not seem to be able to treat your problem.

8- Even if you do not feel sick, get a once-a-year physical. This way, your doctor can find anything unusual or abnormal early on. When diseases or conditions are caught in the early stages, the illness and treatments for it are generally much milder and tolerable.

9- If you find that you do have too many medical bills, call the doctor or hospital. The credit manager will help you make payment arrangements and might even reduce or eliminate your bill.

SHOES

This week: Shoes!

What woman does not LOVE shoes? Ok, we are not all like "Carrie Bradshaw", but we love having something pretty on our feet that also feels good.

Ok, I love nice shoes. I have a few favorite brands of shoes. My size is always the same in these brands. I am an 8.5M in Clark's and an 8M in Sofft brand shoes. For being 5'2-1/2" tall, I have big feet. That is beside the point. Back to shoes. Clark's and Sofft brands are both expensive They run generally between $50.00 to $100.00 a pair. On my budget, I cannot afford these brands.

So, how on my very tight budget do I get expensive shoes in my closet and on my feet? I don't steal purses or rob trains. I buy them on e-bay. Yes, e-bay. I know my size with these brands, and they always stay the same. E-bay sells new shoes too. I am a germ-a-phobe, and I don't want anyone else's germy toes touching my feet. So, I look for NWT (new without tag) or NIB (new in box) deals. It may take a few hours of shopping and bidding, but I get a killer deal on new shoes.

Tips for shopping on e-bay:

1- Remember to calculate postage when figuring out the cost of each item.

2- Set a limit, and stick to it!

3- Bid towards the end of the selling time.

4- When buying shoes, stick to brands you know. That way you already know how your foot will fit in them. It will spoil your fun when trying to wear a pair of new shoes, and then finding out the pair is too small or too large.

Alrighty, get shopping.

MONEY

My Mom has been pushing me to write a book and share my ideas with others for months now. For now, I think I will stick with the blog. Others can benefit from saving money by reading a blog too.

I always seem to have cute clothes and my apartment is nice. I eat well, and my bills are paid. I too live paycheck-to-paycheck. I am a working class single woman. How do I do it?

It is not a secret! It is simple really. Anyone who knows me well, knows that I live frugally.

My goal is to write a tip a week on an easy way that each of us can save money or improve our own individual financial position.

Funny Dog!

Oh my! Meisje has been just too funny!

I bought her three or four new toys, and she has been beside herself with joy. She will play and play, and then run over and come kiss me, as if she is saying, "Oh, thank you!". It is pretty sweet.

I got up to go to the bathroom (it is 2:20 am), and she was wiggling with joy to go to her basket to pick out a toy to take back to bed with her. What a character!

Turning 35

Snow White - Someday My Prince will Come



Ok, so I am 35. Yes, it happened to me too. ARRGH! I am not extremely happy about it. I always thought I'd have babies by the time I was 35.
Wednesday morning I woke up, and was there a handsome husband and kids? Nope. It was just me and the dog.


I went to work, and was surprised by flowers and a giant card from Iva. Mijken and I went out to dinner. Luke sent me a gift. Erin did too. Mom and Dad sang to me twice. It was a good day. I guess my dream will have to be revised.


I am still counting on my "prince" though.

MEISJE!!!!!

Wednesday, I was home sick. YUCK! I felt awful, and my throat hurt, and I had a fever of 103. So, I laid down to take a nap. I woke up to a gross gagging noise. Miss Meisje the troublemaker was at it again. I woke up and put on my glasses. Arrgh! What was she chewing on this time?

She had an empty bottle of "Gorilla Glue" that she was knawing on. Meisje had eaten it all. Meisje performed miracles to get the glue. It was in a closet behind a closed door on the top shelf. That mini acrobat of dog not only had to climb up to the top shelf to get it, but she had to open the door.

I called the Vet, and was told to rush her in. Meisje's vet came into the exam room quickly. She took some x-rays and confirmed the mass in her stomach and intestines. Meisje needed surgery, and her Vet wanted a special Veterinary Surgeon to do the operation. We drove across town to the Surgeon's office. Meisje was immediately taken into the operating room. The mass that was removed from her belly was about twice the size of my fist. It looked like the inside of a Nerf ball, but felt like volcanic rock. Poor baby-dog! Her belly has an almost foot long incision.

Meisje had to have medication every two hours for several days. She was on pain medication and an acid reducer. She moved to every four hours over the weekend. Last night she moved to a much nicer schedule for me -- every eight hours for another week. In ten days, she will have a check-up to see if her staples can be removed.

She has to be the world's luckiest dog. Meisje is healing well now. She is back to her normal playful-self. She now has a dozen or so extra staples in her belly, her stomach stitched, and sutures in her abdominal wall too. We had to bring the addition of an e-collar (which she HATES) to keep her from pulling them out the staples.

Meisje has a new cow toy to console her during the healing process. Meisje likes it because it moos. I like it because there are no eyes to pull out.

Meisje when she got home:

A close-up of her belly:

Ok Mom, GET ME OUT OF THIS!!!

Another picture of Meisje with the dreaded E-Collar:

Busy, busy month

The month started out with a bang! My dog got surgery, My brother's baby was born, My Mom came for a visit, I started a new migraine medication (it seems to actually be working), and I have some energy back. WHEW!

Here is a picture of the monster dog -- Meisje sleeping away on her back. That was while she still had the yummy tramadol (doggie painkillers).

Here is a picture of Me, my nephew Sully, my niece Hannah, and a portion of my Mom. The camera cut her off. Sorry!

I went to a Iva's (my closest friend) sister's son's 5th birthday today. I always feel at home with Iva and her family. They are the best! Here is a picture of Iva, her sisters, her Mom and me. Left to right, from the back and then the front: Mesepa, Taute'e, Fa'a putuga, Toaiva, Susana, Me, Faitalia.

Meisje had an adventure. She had some minor surgery. She is ok.

Meisje's love of chewing things got her in trouble. She got a spring lodged in her esophagus. Yes, a curly pig-tail like spring. She woke me up last night because she was vomiting blood.

We went to the Vet's office this morning, and got her checked out. Not only did Miss Meisje have the spring in her, but she has some of her toy parts in her belly. Meisje was sedated and they cauterized the wound in her lower throat. She is stoned now. See the video.

As far as the other things she has ingested, Meisje has to be on laxatives to help her pass them from her system.

All I can think is, "Thank Goodness for pet insurance!"