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Aging With HIV/AIDS

By Rae Lewis-Thornton

March 3, 2014

I've said it before, I never thought that I would live to see perimenopause, but I did. While I'm glad to be alive, I've got to admit, menopause or pre-menopausal which is what I'm gong through, is more than a notion. Now, menopause is when your menstrual cycle has ended, no more, done. Perimenopausal is basically, everything a woman experiences leading to menopause and you still have a cycle.

While every woman will have to go down this path, studies show that women with HIV have more severe perimenopausal issues. We tend to begin menopause earlier at 48-49 years of age. This is true for me. I started having hot flashes at 48. Women with HIV tend to have more severe hot flashes, depressed moods, irritability, sleep problems and all of this could lead to issues around adherence to HIV medication and ones overall well-being. As well as, a greater risk of heart disease.

It's interesting, older women don't really talk about menopause much other than hot flashes. When I was younger, I laughed off the topic with a shrug like most young women.

We go through most of our younger years not really seeking any information on menopause and then before we know it, the months have turned into years and 25 into 50 and we find ourselves knee deep in it and don't have a clue. As a woman living with HIV/AIDS, I'm learning that there is a heavier burden for me as I go through perimenopause.

This is at least true for me and I'm finding it difficult as I muddle through. For the longest, I've suffered through hot flashes. A hot flash is heat consuming your body like an inferno on the inside coming out. For a good two years, hot flashes were a thorn. Then they went away, then they came back, then they tapered off. Which is where I'm at now; a hot flash every now and then. But when I have one, it stops me in my tracks.

Now perimenopause is far more then hot flashes. First off, this thing with the menstrual cycle, it just won't go away and when I'm this close to being done, then BAM! That's what happened last week. I hadn't had a cycle in 7 freaking months, then BAM! For me, having a menstrual cycle is not a breeze. I also have endometriosis, so my cycles tend to be heavy in the cramping; like someone has their hand up my vagina up to my uterus yanking down.

Yep, that was last week. Then these night sweats. Now night sweats are scary to me. Let me explain. Back in the day, night sweats were common for people living with AIDS and it often meant some kind of infection. So when my night sweats started back a few months ago, I went to my HIV doctor in a panic. She tested me for everything HIV related and all my test came back normal. So the night sweats that I'm experiencing are clearly caused by my perimenopausal status.

For the last 3 months or so, I wake in the middle of the night soaked. The weekend was the pits. Friday night I had to change my gown about 4:00 AM. But Saturday night was the pits. I woke up wet, wet, and wet, my gown, my sheets, my pillows, even my blanket was so wet that I had to remove everything. This happens at least 3- 4 times a week, where I at least have to change my night clothes and shift to the other side of the bed, and sometimes it happens a couple times in one night.

All of this means my sleep is deprived and I have to then get up and start the day tried on top of the HIV fatigue that I have a few times a week. I'm not sure how I've been making it these last few months and keeping up with my projects. Somedays I press through it, never really complaining.

Saturday night was the worst in terms of the level of my wetness so far. Needless to say, I woke up scared. I thought that I had peed on myself . The first thing I did was smell my gown and sheets. Finally it hit, there would be no way for urine to make it to my pillows. Relieved somewhat, I got up and changed my gown and sheets. I eventually fell back to sleep and when I woke for the day, I was wet again. It was one rough night.

For sure, waking up in the middle of the night 3-4 times a week is interfering with sleep. We know that sleep is important for everyone, it is especially important for people who's immune system is compromise. Lack of sleep in and of itself does a number on the immune system, people living with HIV/AIDS don't need anything extra to effect the immune system negatively.

Then on top of the night sweets, which are depriving me of sleep. Some nights I have a hard time falling to sleep. The doctor prescribed medication back in the fall and for sure, if I don't take it, I'm still awake come 2:00 AM. I've learned my lesson so I take it, but it makes me a tad groggy in the morning. This means a few mornings out of the week I'm groggy from the medication and tired from waking in the middle of the night from the night sweats. It has been a vicious cycle.

Additionally, perimenopause has caused me to have what's call atrophic vaginitis, which is inflammation of the vagina due to the thinning of the lining. Now some women actually have a very dry vagina. For me, I have thinning in the uterus, which makes it raw and sore. I also have this rawness on my vulva area at times. It is quite uncomfortable to say the least.

While most perimenopausal women are at risk for Osteoporosis women with HIV are at an increased risk. HIV actually causes bone deterioration for both men and women living with HIV. A year ago I had a bone scan to get my base line and we discovered that I have already started to lose bone.

This is one reason I keep trying to convey to people who are not infected. You do not want this infection. We can treat you and you will live a long time, but there will be problems the longer you live with HIV, no matter how good you feel today. HIV does damage to the body, bottom line.

Lastly, these freaking mood swings. One day I'm happy go lucky and the next day I'm not in the mood for bullshit. In the scheme of things, I'm happy. I feel good about life and what's happening in my life so I shouldn't be this emotional.

The biggest issue for me is that the mood swings have effected my productivity. Somedays I have to make myself push through, especially when I'm sleep deprived.

There is also an impulse to eat emotionally. I gained 5 pounds back over these last two months from not working out and emotional eating. I'm trying to eat back on track but it's a challenge. I've decided that I can not bring certain foods into my house. I just can't.

Needless to say, I'm headed to my gynecologist Tuesday! I'm fed up right about now and need a solution to this madness. I know that diet and exercise can help some of these perimenopause symptoms and I'm trying to get back on track. For sure, I need some extra help and I'm going to seek it out. I always want to live my best life and so I do the things that will render the best outcome.

This weekend was really really rough for me all the way around. Oh, by the way, it's 5:00 A. M. Monday morning and I'm up writing this blog. I woke up at 4:00 A. M. to change my night clothes and I couldn't go back to sleep. Yes, I'm glad to be alive. Yes I'm tough beyond understanding. Yes, I will work through it all. I always do, that's what makes me me. But, being super woman does not take away the super hard and that is a fact.

For sure living with HIV/AIDS long term has presented tons of challenges. Now as I age, I'm having to consider the issues that effect every aging woman at an even more complicated level. HIV is the gift that just keep right on giving; that is for real and it ain't never pretty and some days I wish that I could just give it back.

Read Rae's blog Rae Lewis-Thornton Speaks.




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