Am I Strong Enough?

I have been told by many people that I am strong. Strong in how I keep moving forward in spite of all the bullshit that is thrown at me. Strong because in the face of everything I try to have a sense of humor. Strong because most people couldn’t handle all the shit that I deal with daily.

You know what the secret is? I am not, I am not strong, I do not want to keep having to deal with everything that keeps coming at me. If I could chose, I would say “No THANK YOU!” or “Fuck Off!” but no one is listening. No one is giving me the choice to not be strong.

I get that most people don’t think they could handle it, but you don’t know until it is the only option you have. I think of this frequently when I say something stupid to a mom with twins like “good for you, I couldn’t do that”. They didn’t have a choice either, they have to figure out how to handle multiples.

This last week I am fairly certain I tore my right biceps tendon, but I can’t get into the doctor for 2 weeks. You might think that is a weird thing to be certain about, except I tore my left biceps tendon last year so I know exactly what that dull, throbbing pain feels like. The constant weighted feeling in my shoulder if I use my arm.

Yesterday we took our boys to the mall, my body’s internal temperature regulator does not work, thanks MS. I am walking around the mall with my husband, son and service dog trying to have a good time for the kids. Meanwhile my face is turning red, my husband tells me my face is beading with sweat like I was working out , I start to lose all feeling in my legs (causing a weird limp) and all of my pain was intensified and my brain felt like it was melting. None of this was by choice. I am not a toddler, if I throw myself on the floor and have a tantrum or start crying not only would that embarrass my entire family but someone may call 911.

There have been times when people tell me “God only gives you what you can handle” and to that I say “Bullshit” and this is why I am not strongly religious. What kind of asshole gives a person MS, Meneire’s Disease, PCOS, torn hip cartilage, torn tendons, anxiety, alopecia an all the small things wrong with me and all the worse symptoms of the main issues too.

I am three months late getting my infusion for my MS, first the hospital messed up twice and then we had to wait for insurance. I finally got it approved and today my insurance approval letter says the medication that is given twice in two weeks at 300 mg doses was approved for one time of ONE mg. I am done! I am tired of fighting but I have two children and a husband that need me so I don’t have another choice I have to keep trying to move forward. It’s like climbing a escalator going the opposite direction, it’s hard and exhausting but the only other options aren’t great.

So, sorry for the long ranting of this post, but the message to take from this is you don’t actually have to be strong to look strong to people who don’t know. Mental health is important and this is why I talk to a therapist every two weeks, more frequently if needed. It’s a place where I get to not be strong to the outside world, I feel safe being vulnerable and I don’t have to worry about anyone else during those hours. I don’t have to worry about making my children or husband worried for me. You don’t have to be weak alone, you can find someone to talk to that can help you work through all the unfairness that comes your way. Work through anger, fear, sadness and resentment, oh how my therapist would be proud of me with acknowledging feelings other than anger.

It’s hard, life can be difficult and frustrating. There may be days you cry in the shower so no one knows it’s happening (shhh not me, ok don’t judge me). I do my best to try and give my boys good memories of their childhood, I work through the pain on the days I can and watch movies with them on the days I can’t.

So many specialists…

When you have a chronic illness it usually means you have more doctors than your typical patient. I have more than one illness so I have more than 20 doctors and physical therapists in my Rolodex.

Tomorrow I see a spine specialist for the first time. I have had spine pain since I was 16, it has gotten progressively worse over time and as such I just got use to the slow increase of pain.

The reason I’m just now seeing a specialist after more than 20 years is because the pain was completely gone for 15 months after I had stem cell treatment. Once that 25 months was over the pain came back full force, no gradual increase just BAM!

That was the first time in my life I understood the need for heavy pain medication and how someone could come to depend on them.

I had assumed the pain was related to my MS and a lesion near that location on my spinal cord but my neurologist informed me that was not the case. On his referral I get to add yet another doctor to my file.

The takeaway from this that NOT everything is related to the major health issue and if you discuss it you may never know. Also, spreadsheets, because I can tell you for sure one small spreadsheet with doctor’s info is a lot lighter than 25+ business cards.

Ménière’s Disease – Silences Sound, After Annoying Ringing

A disorder of the inner ear, with no known cause and no cure. There are treatments for the symptoms but no cure.

Signs and symptoms of Meniere’s include severe vertigo, tinnitus (ringing in the ears), ears that feel full or congestion (liken to ear infection pain) and hearing loss. Typically this only affects one ear, sometimes (about 30% of the time), it can affect both. You can also get muffled hearing, which sounds like being under water. According to some sources, it can take between 5 and 15 years to run its course. It is not noted however, if this is from diagnosis or onset.

Meniere’s is more likely to develop if someone else in the family has it. Some sources say it starts between ages 40-60 and others say 20-50. That’s quite the large spread for age of onset. One of the most common signs, other than vertigo is the sensitivity to sounds, whether loud or certain pitches. For me, it’s whistling, it grates my nerves and causes migraines. It didn’t used to, but now, living in a house of males who like to whistle I am constantly being the terrible nag begging them to stop.

The symptoms are thought to be related to a buildup of fluid in the parts of the inner ear known as the “labyrinth”, this is where balance and hearing organs are located. An abnormal fluid buildup in this location interferes with the communication to the brain that signals sounds and balance.

Getting Meniere’s disease, much like Multiple Sclerosis in my opinion, appears to be a combination of things happening causing a perfect storm. Researchers think that perhaps a constriction of blood vessels could trigger the disease, much like the constriction that cause migraines. There are also theories about viral infections, allergies, migraines, head trauma and auto-immune responses. If you have Meniere’s I can tell you for certain the tests needed to confirm the diagnosis are terrible. The one that was the worst for me was when they blew different temperatures of air into each ear and asked me questions. I got so sick doing that test I almost threw up in the office.

The hearing loss that happens with Meniere’s usually happens at lower level sounds, whereas age related hearing loss usually impacts higher level sounds. Bouts of vertigo could cause more hearing loss but in general there is a steady, slow loss of hearing in the affected ear. Hearing loss is permanent and sometimes can lead to complete loss of hearing the afflicted ear.

Due to the vertigo that comes with this disease, people are more at risk for falls and something called “drop attacks” which is a sudden fall to the ground. There’s another thing I was unaware of prior to testing. At what point do you know what is caused by Meniere’s and what is caused by Multiple Sclerosis, which also puts patients at an increased risk of falling.

It is thought that up to one-third of patients with Meniere’s also suffer with migraines. Some of the more odd things that come from the Vertigo complication and not directly from Meniere’s is nausea, vomiting and sweating. Apparently frequent attacks of vertigo can wreak havoc on the digestive system and the hormone response from the same can cause excess sweating.

There are several types of treatments for the different symptoms. Diuretics or low salt diets are the go to, however, I have low blood pressure so that was not an option for me. I tried several different pills for the vertigo, none of them worked. They finally prescribed me a patch you put behind your ear for up to 3 days and that did work. I was able to take a plane and a ferry boat while wearing it without getting sick.

There’s an injection of dexamethasone or gentamicin which I have not been brave enough to even ask about and surgery. These injections go into your eardrum (shiver) and can reduce the vertigo but increase the loss of hearing and worsen your overall balance. Surgery is the last option which only treats the worse vertigo.

It is kind of crazy how one tiny part of your body can mess the whole thing up. I have been trying to come to terms with the fact that I have this disease in both ears. I wear a hearing aid in the left as it is the worse of the two for now. It has a setting on it that is supposed to reprogram my brain to stop trying to hear the waves that cause the tinnitus. Eventually, I will need a hearing aid for the other side too, I say there must be a reason I learned sign language as my second language because I will most likely have to rely on it at some point in my life now. Though it may help with the “Cog Fog” and word finding problems I have with my MS.

If you need a hearing aid though, the one I got it really small and most people don’t even notice unless I say something and/or adjust the volume in front of them. Though now, I kind of wish I had gotten one with a cool design, I see kids at my youngest son’s school rocking camo or bright red ones and I am a little jealous.