2008 December - Challenges

You know how they say "…but you look so good!"

Anyway, this is about my past weeks. If you've wondered why I comment hardly ever anymore, or why my status' is more indifferent than anything else lately, keep on reading.

There are two things going on in my life at the moment we speak.

No. uno (Italian for one):

I am on my monthly.

And yes, I need things kinky. So it is with aunt flow as well…

My period lasts, as of today, exactly   T H I R T Y F I V E   days. *sigh*

On top of that, for the past three days I am not just flowing, it is pouring out of me! Which means I'm using a fresh night pad every 1-2 hours (usually one lasts for 24 hours with me). I feel it running out of me. It is so embarrassing how you can't sit, get up, sit back down, walk, walk stairs, let alone ride the bike and yesterday evening I'm not sure if I've stained my neighbor's chair while teaching her. I gotta check on that one later on today *ashamed*

The most disturbing fact about this is, that all my gynaecologist did is put me back on the birth control pill to regulate the period some and to insist it just   C A N N O T   be the meds against MS I'm taking, it is simply that I'm obese. *watery eyes*

But the description slip that comes with the Copaxone says it could cause problems with that and my doctor just blames it on my weight!

It just feels so 'nice' to be told so.

Anyway, no. two:

For those of you who followed my ranting and venting at Stan's page know already. For all the others, as you might know I'm injecting Copaxone for about three years in the meantime. I did so solely into my upper legs. And… those gave up on me now. The skin is harmed so much (within) that I couldn't place the needle anywhere anymore.

So I have to go with the flow now *lol* *sarcastic* and rotate the injection areas on: the back upper arms (6 spots), the stomach (6 spots) and the butt/hip area (another 6 spots). Today is day   F O U R T E E N   . No matter where I stung myself with the injector so far, it hurt, it swell, it itched, it got red, it bruised, it built lumps inside the skin and it even started to bleed instantly.

At one point (the fourth time I stung into the arms) both of my arms turned numb that very night, which was very scary for me (two days ago), because that's how it all began, how I found out I have Multiple Sclerosis in 2005. My right arm turned totally lame.

So I believe there's no need to explain, that each evening is mere torture for me, having to worry about what'll happen next.

Other than that…

I can sleep extremely well these days. ;-/ Because all this is a draining experience for me, all that blood loss must be exhausting for the body! Luckily the next month's BCP will have to be started on Saturday. At least it should stop by then, if not sooner. One evening I even went to bed at 9 pm. Go figure!

Anyway, it's my blog and I felt like sharing.

Thanks for paying attention guys (well, girls).

I'll try to manage my way through the day now, 'good looking' as always! Oh, I will get my nails done today. At least one uplifting event for me   ;-P

2009 January - Punch biopsy

For all of you who've been following my status know that I had a minor surgery performed on my foot today... The skin has to be tested for cancer or other malfunctions, because that's what it is. It doesn't look normal and... it's spreading, and... I didn't have it before Multiple Sclerosis...

Now to my surgery today. I suppose it all has to do with the MS. Maybe with my injections, the medication description says that changes of the skin can occur. So maybe it's that?

I was so scared, because I didn't know what to expect and I had nobody to come along... plus no ride, public transportation was the key today *sigh*

Well, I didn't see the surgery at all, because I had to lay flat down, and my belly is so big, that I didn't see past it *lol* Then I felt like just the stitches of injections the whole time, for about 10 minutes, and... that was it obviously (?). Altogether I spent one hour at the doctor's.

I can't see much of it now either, it just itches. There is a big bandaid covering the punched site. She (the doc) sew it together with one stitch and that has to be removed in two weeks. No water should get on or into the wound, and I'll have to put iodine on it tonight *yikes* :( that's when I'll get to see it for the first time! She'll also provide the result from the lab in two weeks.

What it is? Well I don't know, but in June last year I started getting little tiny red dots on the skin of my left foot. At first I thought it would be an allergy or a rash or something and didn't think much of it. Maybe a reaction to one of my new slippers? Over the summer it bothered me to look at them dark red spots, they increased, got bigger and started spreading higher. They went up till my ankle and even started on the other foot.

One day I told my house doctor about it and said my research on the internet showed it's what they call Petechiae. A harmless malfunction of the white blood cells or something.
He said, no, it's not that and that the skin doctor should check it one day. It doesn't itch or anything, it just doesn't look nice, but I don't go swimming anyway, so just Peter sees it and it doesn't bother him.

Now I started thinking... well, if this stuff spreads until it reaches my arms or even my face (!!!) I couldn't handle that! :-/ So I let her check it.
She basically said in December that it doesn't seem to be skin cancer, and it wouldn't be the dangerous kind, whatever else it is.
But she also said she wanted the laboratory to test it, and that's why she needed to perform this skin punch biopsy today.

I'm fine, just a little worried about having to shower tonight... How am I gonna do that? With my leg wrapped around my neck, or what? *lol*

Anyway, that's my story. I felt like sharing and for my fellow MSers to know!

Stay healthy, all of you and thanks for paying attention to my blog.

And here is a photo I googled, no it's not mine, but it shows how it looks like...

2007 August - Pain

August 13^th, 3.43 am

The society for pain and pain relief in Germany sent me a scale. It goes from 0 'til 10. If I should identify the pain that woke me up, it would be a 12 at this second. I feel like dying. I'm all alone with this unbelievable pain. I can't move. My chest feels as if I'm in this former described pressure of a lathe. I need to get an ice pack and place it on my chest, right now. Like Crystal explained it before… NOW. I can't stand up, I'm freezing already, almost shivering. I need to close the shutters, the street lights bug me, I'm cold, I'm hurting, almost crying, alone. He is working, in the other room, on his reports, on the home network, to fix something he can just do at nighttime. She is sleeping. I wanna go back to sleep, also.

3.45 am

Finally I get a hold of my Ibuprofen, laying next to my bed, grab the water bottle, swallow. I remember every word that was written on the forums by Tim, Jimbo, Crystal, Karol, Becky, Carrie, Mrs. Swenson, Stan and others – oh I would write perfect blogs in bed if I could, I think about recording them on my mobile. But the pain struck me like lightning. This summer I got stung by a bee, in the finger, and it feels like 10 times this pain at the moment. Finally… I get up, get dressed warmer, close the blinds, grab a wash cloth, go to the freezer, take out one of the ice packs, stick it into the wash cloth and I'm so happy when I can lay back down and place it on my chest. Tears run down my face… I hate this, when I'm so weak. I'm a strong woman, d… it. Not this whimpy me. A friend of mine got his foot cut off, that's pain and a reason to cry, some other friend of mine was seeking advice in the forum, because she doesn't know which cane to buy, that is pain. People who are diagnosed freshly, starting treatment, don't know what to expect next and how to handle it, that is pain. And me? I feel sorry for myself, burst into tears… It makes me angry to have these feelings. I fall asleep, finally.

6 or 7 am

I wake up again, must have been fallen asleep, and start thinking again. It's Eylene's birthday. I shouldn't forget to send her congrats. Can't forget to post a blog about sensibility problems, I found it in one of my MS books. A table about it, which describes it pretty exact. I'm so dead tired, I can't find words for it, let me sleep, I don't wanna ache. It has been good again for such a long time, but yesterday the fall weather stopped, and it became summer again, hot. I know what he will say: no wonder, you sat in front of the computer for 3 days working on your page, that's the bill for that! Well I felt pretty good these days, so let me. I know I'm gonna end up on my nose again sooner or later, let me be. And then I think of Crystal. What does he know? This pain has nothing to do with exaggerating, or overdoing it! It came out of the blue, out of nowhere. I would like to get my cool down vest out of the freezer, I'm burning up from within, I am so heated up right now! I lay down as flat as I can. I would need a massage, my back hurts. Would be good if I'd place an ice pack there, too. Then I think of people who told me that I just have to get back on track (you hear me Crystal, that's exactly what your bulletin was about?), or other ones who said I look so healthy and good, that must be a joke that I'm retired being 41 already. I feel like crying. Cry myself to sleep again.

9:20 am

Got enough rest. The pain starts to come back. I don't wanna take another Ibuprofen, that would make it 1200 mgs today (!). Gotta ask the doctor for 800 mgs, can't forget that! My brain says go, get the pill, it's an 8 on the pain scale at least, so I give in, I don't wanna hurt today anymore, eventhough I have a bad back ache. I wanna write this blog, hope I can remember all the words. I think I'll have to lay down a lot today, maybe that'll help? You know, these days are the days when people don't see me out in the bout. That's when I don't socialize, when I feel like a shot deer, soothing and licking my own wounds. But you can't tell I've got Multiple Sclerosis just by looking at me. And never forget: I'm one of the fortunate ones who aren't affected that badly. I can still walk, see, think (sometimes better, sometimes not), move all my extremities. Ain't I lucky? But I suppose you don't wanna exchange your health with mine, do ya? ;-)

And I thank The Lord each and every day, that I feel SOOOOO good, seriously. That I have everything I need, that I have a good life, and such cool friends like YOU! Just wanted to share some of my bad times.

2007 August - The MS Hug

By Jimbo:
Does anyone else have this symptom?

It's banding around my entire mid section and won't ever let go. Years of this and I still cannot get used to it. The skin is numb all around (is numb the word?), my muscles feel like they are closing in on my insides and I know my guts are feeling the sting of it too. I don't even want to get into that.

How do you deal with a spasm (is that really the definition??) that doesn't go away? The whole stomach and the back opposite....A heating pad works until I try and lift something or play my instruments.

Anyway, I need advice about the abdominal spasm, that's the point of this message.

By Regina:
It sounds a bit like with my let me call it chest ache: it feels as if you're stuck in a vise-like grip, and the pressure on your chest grows and grows? This is how I feel sometimes, and I take Copaxone each day.
Anyway, so when that happens to me, and the additional Ibuprofen doesn't help, and the lying down as flat as possible doesn't do no good either, I found cold being of help. I have a special cool-down-vest, and as funny as it may sound, the freezing cold for up to 2 hours takes away the pressure, the pain.
Heat would be the least thing in the world to help!
Try this one.

By Regina:
I know the feeling, but two days ago I read about it here first! Can anyone explain it to me (in a more medical sense?). I've never read on German sites about it. My doctor says all I can do is take pain relievers, I found out that cold and ice helps me best and lying down absolutely flat. But... what exactly is it and where does it come from?

By Tim:
Being an acupuncturist, I would have to agree. Acupuncture would be a good modality. Personally, I would prefer electro--auriculotherapy because I feel it's more diagnostic and I have more control with it and can be more specific in my treatment areas.

What you have to understand with Acupuncture and auriculotherapy (which is a form of Acupuncture using reflex points in the ear) is that its main mechanism is to reset body control functions. By resetting these functions, the body will start operating properly and can heal itself.

The limitation is, if the damage is severe enough that the body has no way to heal it even if it was functioning properly, such as severed nerves (the eventual result of MS). As my one of my instructors used to say, "matter has its limits". So, while Acupuncture is extremely effective in resetting muscle tone and I use it extensively for that, and it could significantly help with the "MS hug". If the reason for the "MS hug" is due to severed nerves within the central nervous system, it may not be that effective. Therefore, other therapies that stimulate the muscle to contract may be required to reset the tone of the muscles.

So, I would focus on all three modalities. Acupuncture (auriculotherapy), stimulation of the mechanical receptors (spinal manipulation) and Russian stim.

The interesting thing with auriculotherapy is, within the first few minutes of treatment, you can tell whether it's working or not. The patient should experience a reduction in the muscle spasms that quickly. Once the auriculotherapy has minimized the spasms as much as possible, then you stimulate the mechanical receptors by adjusting (which should add another level of relief). If these previous steps don't work or have limited effect, then I would try Russian stim. The other aspect it considers nutrition, make sure the patient has plenty of potassium and calcium within their diet and that there are absorbing it. Low levels of potassium and calcium will also increase muscle tone and make a person more prone to spasms. If none of these work, then my toolbox is empty.
The MS hug is a good way to describe this.

I too use ice packs on the back of my neck and my head when I over heat (due to the summer anyway).

By Tim:
I've experienced the MS hugged for about 10 years now, on and off. I don't believe I've had it as severe as some of the people have stated. To me it is just a constricted band about 10 inches wide that wraps around my body at the lower part of the rib cage.

I'm not sure what the reason is for this, obviously is neurological of some sort. But there are a few distinct causes for muscle spasms. One of them is a decrease in the signal output of mechanical receptors. Each type of nerve has its own distinct job or sensory area. Some nerves carry pain, others touch, others hot and cold, and others detect mechanical motion. It is these nerves that tell your brain where your body is in space. Users also have the unique capability of inhibiting pain. That's why when you get hit in the arm with the ball, rubbing the arm makes it feel better. Rubbing doesn't fix anything, but it stimulates the mechanical receptors in the skin, which inhibits the pain signals from the blow. Hence the term "walk it off".

When the body interprets an increase in the pain signal (which is actually can be a decrease in inhibition) it interprets that area has been injured and does its best to restrict movement in that area by increasing muscle tone. The increased restricted movement now, of course decreased the inhibition to a larger extent. Which in turn would cause the body to try to restrict the motion even more. So the cycle begins. For me, what I had found, was when I was experiencing a episode of "MS hug", my thoracic spine was locked up. I would find that my thoracic spine had nearly no emotion/flexibility. I would have someone adjust/manipulate my thoracic spine, which broke the cycle, and the "MS hug" quickly dissipated.

The other thing with muscle spasms, is that the muscles require a certain level of stimulation to maintain the proper tone. If they don't receive this stimulation, the muscles try to compensate, to become more sensitive to any kind of stimulation and in doing so would decrease the threshold limit. When this threshold level gets decreased to a certain point, it seems that the muscles create their own signal (actually they are responding to neurological background noise, for lack of a better term) and will self constrict which will increase tone and go into spasms.

And I don't know if this happens with the MS hug, this is what happens in my legs and arms. The only way to break this cycle is to force the muscles to contract with stimulus, so that they reset their threshold to a higher level and thereby decreasing muscle tone and spasms. I do this by utilizing a technique called "Russian stimulation". This is a physical therapy technique, utilizing the electric stimulation in a specific frequency through adhesive pads placed over the muscles being treated. By forcing the muscles to contract with electrical stimulation, three things happen. 1) the muscles are actually getting exercised, and muscle loss is decreased. 2) since the muscles are being stimulated, their threshold is being increased and therefore require a greater or logical signal to try to fire. Hence the background noise no longer triggers a contraction. 3) because the muscle is being contracted and relaxed, there is increased blood flow into the muscle tissue which will also have a big effect on decreasing the tone and spasms.

With the "MS hug" there's also the possibility that the core muscles (the muscles that allow you to stand straight up) may be weakened by the MS and other muscles try to compensate for this weakness, they become overworked and spasms. Therefore, strengthening the core muscles may help prevent episodes of the "MS hug". But, once the cycle has started, you first need to reset the muscle tone whether it be with physical therapy or instilling motion into the thoracic spine to activate the mechanical receptors. Whatever seems to work best for you.

The thing to remember, is that your body is doing what it thinks is best. It's trying to compensate for the disorder, and doing its best to survive. It just sometimes gets it wrong. Sometimes the solution is worse than the problem. Sometimes the best therapy is developed when a person looks at what the bodies trying to compensate for, and focus on that rather than the symptom. Because if you can take care of what is trying to be compensate for, the symptom will go away.

Sorry if this seemed a little long-winded, but I thought it might help.


By Tim:
In the above posting, "User" was supposed to be "These nerves".
And, "emotion" was supposed to be "motion".

2007 July - Side effects

My personal troubles with MS and

my side effects of prophylaxis against it..:

Troubles with the illness are unique. Here come mine, starting from head to toe… and mostly one can't define if it's troubles or side effects, or normal problems healthy people have too:

1.      fast weariness/fatigue, condition of exhaustion, combined with sleepinessI need to take a lot of breaks during the day, sums up to not even 3 hours max. of energy I have left per day; I'm tired as can be, as if I had done heavy housework, or had worked a long day at the office, and then on the other hand I can't sleep, lie awake at night time!

2.      aches (head, neck, back)they appear out of the blue, mostly when I 'overdid' something, didn't take enough breaks, didn't rest long enough etc.

3.      nausea

4.      cognitive deficitslack of concentration (I jump from one subject to the other), can't read or telephone then, can't even handle music or loud noises; ability of remembrance shrinks; memory problems; it's hard to find solutions to solve problems; loss of multi tasking;

5.      bowel and bladder malfunctionsability 'to hold it back' shrank, the capacity of bladder and intestines reduced

6.      disturbance of balanceyou have a gait like drunks (a friend of mine wears a t-shirt then, saying: 'No I'm not drunk, I have MS!' sad huh?)

7.      visual disturbancesblurry vision, or double vision, my eyes can't focus or zoom then

8.      disturbances of sensitivityon the skin for instance, lips, tongue, facial parts have a tingling sensation, or the extremities do

9.      difficulties in speechas if my tongue twists, words don't come to mind easily, or they blend together

10.  loss of feeling surfacesif I touch surfaces, they all feel the same (silk, cotton, sand, velvet), and I can't just grab into my purse or wallet, I'll have to look in it, to see what my hand feels, and being a cosmetician, chiropodist and office clerk, that's very bad when you can't depend on your hands, I tell ya!

11.  inflammations in the mouthas if you had too many sour foods (tomatoes, juices)

12. high body temperature and transpiration

13.  shivering fitI go to bed in my pajamas and socks, and have to take everything off during the night, because of heat waves going through my body

14.  rash, fungus, eczemamy dermatologist says it's my nerves, I should try to relax instead of scratching, but the 'Beipackzettel' (medicine note, explains which ingredients the medicine includes) says: changes of skin

15.  chest pressureit feels as if your upper body part is stuck in a vise, pressing you tighter and tighter together, only cure: lying down, using ice packs to 'freeze frame' the pain

16.  cycle difficultiesintervals, length and intensity of menstruation are very irregular

17. hurting knees

18.  heavy legsI used to love dancing, but some days I can barely lift my feet, let alone dance!

19. bad circulation, bruises

Let alone the flushes in the face one has sometimes (my face turns sweaty and red like a tomato), or when you give yourself the injection… I sometimes hit a vein, or muscle! Then it starts to swell, or even bleeding, if I didn't put it deep enough into my skin.

All this comes in various combinations, or not at all. Every day is different for me, and I have to adapt to my body's and the illness' needs.